tag:blogger.com,1999:blog-17044069576620881682024-03-10T01:35:54.066-06:00The Chronicles of Ellie Bellie BearA SAHM and former nurse practitioner who writes about her daughter who has Down syndrome, ADHD, and other random medical issues.Anna Theurerhttp://www.blogger.com/profile/06937391910402532608noreply@blogger.comBlogger930125tag:blogger.com,1999:blog-1704406957662088168.post-25065031311749916932022-11-11T14:21:00.003-06:002022-11-11T14:38:53.385-06:00Cecostomy Tubes R Us<div>Here we are - two posts in 30 days! It's scandalous, I tell you! Seriously though, I bet you all thought that I abandoned ship and would revert back to neglecting this blog. Well. . . ahem, *<i>whispers</i>* I thought about it, but then I figured I'd present you with more random medical stuff, some pics, and the usual Ellie Bear antics. Yes, antics on steroids because you know, hormones and puberty.</div><div><br /></div><div>If you've been following The Chronicles of Ellie Bellie Bear for a while, you know that I love to get into all things medical. I am a former pediatric nurse practitioner turned mama bear to a sassy 13 year-old with Down syndrome and other random, semi-complex, but not serious medical issues that pretty much have nothing to do with her having Ds. Please the disclaimers listed on the side of my blog. </div><div><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3dBcVZLE0N4Iczcb4FnLXfa8yRdWaHY1WAQ4rsFEXyBxca83Cl3NV2ao9qvNQBOvEICeTg19y1cMpXeK7jtOcSIbt4WykJPXWfIsCpQVbhWoYTNTIQn7yiSlgCO_oFDfx-SEJLTKNBzFvrk_QzIi6AmFSBczjKh7yndNA-aFYsruWbtOK6Jp0BEH1Lg/s3024/18434035-123B-475D-96E5-CA03B5AFD95C.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3024" data-original-width="2268" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3dBcVZLE0N4Iczcb4FnLXfa8yRdWaHY1WAQ4rsFEXyBxca83Cl3NV2ao9qvNQBOvEICeTg19y1cMpXeK7jtOcSIbt4WykJPXWfIsCpQVbhWoYTNTIQn7yiSlgCO_oFDfx-SEJLTKNBzFvrk_QzIi6AmFSBczjKh7yndNA-aFYsruWbtOK6Jp0BEH1Lg/w300-h400/18434035-123B-475D-96E5-CA03B5AFD95C.jpeg" width="300" /></a></div><div><br /></div><div><br /></div><div>Now on to the actual point of this post. There is a point? In case you cannot tell by the title, Twinkletoes still has her cecostomy and for the most part, it has been a Godsend as her constipation is <i>finally</i> well controlled and she is no longer fighting us with the ante-grade enema administration. She seems to be happier now that she doesn't have weeks'-worth of stool packed into her gut and she is eating better and finally no longer failure to thrive. It took us some time to find a good regime and we have to tweak it here and there but she is now getting 175cc of SMOG through her tube 3 x week. SMOG is saline, mineral oil, and glycerin. Sometimes we toss some Milk of Magnesia directly through the tube if she seems to be getting backed up. The type of enema through a cecostomy is different for everyone -some people only need water, others need saline, etc. We were hoping that she would only have it for 2 years to allow her colon to snap back to its original size and elasticity but here we are 6 years later and she just cannot seem to go on her own. The kiddo may be a cecostomy lifer and I am actually okay with that. </div><div><br /></div><div>That being said as with any ostomy and with any medical device (Chait Trapdoor), there can be things that go wrong. The list includes infection, appliance failure, skin breakdown, infection, parastomal hernia, and tube dislodgment. </div><div><br /></div><div><span style="font-family: courier;"><b>**Even with all of the possible complications, I firmly believe that for Ellie, this cecostomy has vastly improved her quality of life and my husband and I do not regret her undergoing this procedure.</b></span></div><div><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7cJ6objZ2DQdUFlkrLh6IEnbcw4ZBEp32h1bXeHvF0F_4l7p7bT2WZ94kaKpUHeWsGjykOl4XTcYkq1z6048DWvq9zjXFkR4e_quqiXQh6sd0j5imHrC--EvxcFLf3cdV9B6O-WLxs3olobPQjx7f92qJ4kkevKgHzxqksc4XXidklkdV_EG8HRV6vw/s1640/Untitled%20design-5.png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="924" data-original-width="1640" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7cJ6objZ2DQdUFlkrLh6IEnbcw4ZBEp32h1bXeHvF0F_4l7p7bT2WZ94kaKpUHeWsGjykOl4XTcYkq1z6048DWvq9zjXFkR4e_quqiXQh6sd0j5imHrC--EvxcFLf3cdV9B6O-WLxs3olobPQjx7f92qJ4kkevKgHzxqksc4XXidklkdV_EG8HRV6vw/w640-h360/Untitled%20design-5.png" width="640" /></a></div><span style="font-size: x-small;"><br /></span><div style="text-align: center;"><span style="font-size: x-small;">Photo Credits:</span></div><div style="text-align: center;"><span style="font-size: x-small;">Left: Cook Medical</span></div><div style="text-align: center;"><span style="font-size: x-small;">Right: Arya, Shruti & Gupta, Nancy & Gupta, Rahul & Aggarwal, Arun. (2016). Constipation and Outcomes of Cecostomy. American Journal of Therapeutics.</span></div><div style="text-align: center;"><span style="font-size: x-small;"><br /></span></div><div style="text-align: right;"><br /></div><div>Ellie has what is called a Chait Trapdoor. It is a rectangular-shaped button that sits flush with her abdomen. The tube itself has a straight piece turning into a "pig tail" or corkscrew. This tube is typically replaced under fluoroscopy with sedation every 9-12 months. Ellie spends more time in recovery than the length of the actual procedure. The usual risks include bleeding, infection, device failure, and gut perforation. I think she has had it replaced 6 times. One for each year and then a little extra one from way back in the day when the <a href="https://ellietheurer.blogspot.com/2017/04/the-missing-cecostomy-tube.html">Princess StinkyPants pulled the tube out</a>. </div><div><br /></div><div><br /></div><div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWifoVs8j5lX_2-XAfqHIP3nDu5l44chJ4YJownE6rggMXOre4g6NaLvvmCTBq8xWGUEgZmDYbbr7vf5l2vKlRuurEpwtTQpVUv_RCzpixdOAWkjdWE1zua1Ao_lvOg3SzqB3UAZgUhur6Op1GGyvSywGlmRUis9RaxVkUFWw8J5ZAB5GJkh96I61iHQ/s320/IMG_6527.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="320" data-original-width="320" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWifoVs8j5lX_2-XAfqHIP3nDu5l44chJ4YJownE6rggMXOre4g6NaLvvmCTBq8xWGUEgZmDYbbr7vf5l2vKlRuurEpwtTQpVUv_RCzpixdOAWkjdWE1zua1Ao_lvOg3SzqB3UAZgUhur6Op1GGyvSywGlmRUis9RaxVkUFWw8J5ZAB5GJkh96I61iHQ/s1600/IMG_6527.jpg" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;">Taken a few years ago, this is how the Chait Trapdoor should look.</div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><br /></div>Chait Trapdoors come in Small, Medium, and Large. The size is not determined by its diameter, but rather the length. As a person grows, the colon grows and a longer tube will eventually be needed. Having the wrong size tube can lead to all sorts of issues. Unfortunately, I sort of feel like it is <i>Goldilocks and Three</i> <i>Bears</i> in trying to get the size right. </div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZmc67-CPRvkd1bb8RxCi0OBZXj-Pc9vN3rKIXWRWN9Og80v6txNlimxAKbzGWagEJRV8OlBGTkcOlEa2APB7kY6iIMM9v6GG-5--Zd4UVx0d0kxqwq7R0BbmQiJV-ZE7KjpT_5if_6Iwhj_OvQKb5rAs-ClgS0WM5piaBaA_I2lMUqrGeBeQxXRrkNg/s367/1-s2.0-S1051044314009889-gr1.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="206" data-original-width="367" height="225" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZmc67-CPRvkd1bb8RxCi0OBZXj-Pc9vN3rKIXWRWN9Og80v6txNlimxAKbzGWagEJRV8OlBGTkcOlEa2APB7kY6iIMM9v6GG-5--Zd4UVx0d0kxqwq7R0BbmQiJV-ZE7KjpT_5if_6Iwhj_OvQKb5rAs-ClgS0WM5piaBaA_I2lMUqrGeBeQxXRrkNg/w400-h225/1-s2.0-S1051044314009889-gr1.jpg" width="400" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;">Photo Credit: Science Direct</div><br /><div class="separator" style="clear: both; text-align: center;"><span style="font-family: arial;"><br /></span></div><span style="font-family: arial;"><br /></span><div><i><div style="text-align: center;"><span style="font-family: times; font-size: large;"><i><b><span>*Some of the images in this post may be </span></b></i><i><b><span>considered </span></b></i><i><b><span>graphic by some.*</span></b></i></span></div></i></div><div><br /></div><div><br /></div><div><u>WHEN THE TUBE IS TOO LARGE </u></div><div><u><br /></u></div><div>For years, the tube was the perfect size sitting flush to her abdomen, but then last year the tube placed was too loose. I was told it was the Small but the thing was sticking way out from her abdomen. When she would go to defecate, it would come out to the first coil. I would say "Ellie fix your tube!" and she'd push it back in. It wasn't a horribly huge deal because she wears an abdominal binder (see this <a href="https://ellietheurer.blogspot.com/2019/04/how-to-prevent-your-child-from-pulling.html">post</a>) so it was keeping it in place. Nonetheless, it was a defective tube because it was labeled as a Small in the sterile package but it wasn't actually a small. With a tube that is too loose, there was stool leakage around the site which lead to skin breakdown. She has alway had leaking but this was a bit excessive. Think about a baby in diapers, they are at risk for skin breakdown and yeast infections. Preventatively, I would use <a href="https://www.amazon.com/627571-Critic-Aid-Moisture-Barrier-Antifungal/dp/B014I0GB2I/ref=sr_1_3?crid=2UPCVDXP7SH36&keywords=critic+aid+af&qid=1668193810&sprefix=critic+aid+af%2Caps%2C129&sr=8-3">Critic-Aid-AF</a> around the site and keep covered with 4x4 gauze folded into quarters. </div><div><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6E8Xue5uSf9YVdtTvlJpfKmRCwgZgJgh-S92uFl4no0cX-v9Lw76xGtfi2W1zgGaRolJWlUZXPIYqk5cAviqWlH8TtPSY1r-YcTBFykeSMhhZ_fMXzz-AaTLZSvlh5P7GO5SdxBAHeFFlkXSN8gRv9Y3lau-8Kr8GP6JOAhrUBfqBzyc8RN91Ov5xow/s1268/IMG_5687.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="830" data-original-width="1268" height="261" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6E8Xue5uSf9YVdtTvlJpfKmRCwgZgJgh-S92uFl4no0cX-v9Lw76xGtfi2W1zgGaRolJWlUZXPIYqk5cAviqWlH8TtPSY1r-YcTBFykeSMhhZ_fMXzz-AaTLZSvlh5P7GO5SdxBAHeFFlkXSN8gRv9Y3lau-8Kr8GP6JOAhrUBfqBzyc8RN91Ov5xow/w400-h261/IMG_5687.jpeg" width="400" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;">This was Ellie's tube from last year - notice how far it sticks out. </div><br /><div><br /></div><div>Even with all the preventative care, such a moist environment would lead to skin breakdown, like what you would see with a <u>diaper rash</u> and eventually infection. Typically, I would slap on some diaper cream. Well maybe not slap, but very carefully and gentle apply. I prefer <a href="https://www.amazon.com/Boudreauxs-Butt-Paste-Ointment-Preservative/dp/B00569GU18/ref=sr_1_2_sspa?crid=1XHT7F7L0YQ7I&keywords=buttpaste+boudreaux&qid=1668193937&rdc=1&sprefix=buttpaste%2Caps%2C155&sr=8-2-spons&psc=1">Boudreaux butt paste</a>, but really any diaper cream with zinc works. If that didn't resolve it, then adding some Lotrimin cream - yes the athlete's foot medicine- twice a day for 2 weeks would also help. Unfortunately, my skin sensitive little Bearity-Bear would still occasionally need us to whip out the big guns in the form of an oral antibiotic such as Keflex and once she needed oral Diflucan because it was yeast and bacterial. (Note: Ellie is notorious for getting infections in general, not just at her cecostomy site)</div><div><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgq0zMZr2BfzLIwy6b2-0h0BGDz3LDuatJ0DkiR813z-0e2FNrWUHsrZHxlfqezUY319IQIC7ZqQLTVn2sjXwRnEeDhG2qf3C6_-PBONyqUMG1pj_rooAqbJ455_cEUU4YeCPtCG4Bz2A2trgMP2WDA4gNVSpDeirjWzBxRNR0FOYOCfzqppfGxDzJxBg/s1640/Untitled%20design-3.png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="924" data-original-width="1640" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgq0zMZr2BfzLIwy6b2-0h0BGDz3LDuatJ0DkiR813z-0e2FNrWUHsrZHxlfqezUY319IQIC7ZqQLTVn2sjXwRnEeDhG2qf3C6_-PBONyqUMG1pj_rooAqbJ455_cEUU4YeCPtCG4Bz2A2trgMP2WDA4gNVSpDeirjWzBxRNR0FOYOCfzqppfGxDzJxBg/w640-h360/Untitled%20design-3.png" width="640" /></a></div><br /><div class="separator" style="clear: both; text-align: center;">Left: Just after Ellie had her ostomy made, she had a bad reaction to the dressing adhesive</div><div class="separator" style="clear: both; text-align: center;">Right: excessive drainage saturated the gauze dressing resulting in skin irritation. </div><br /><div><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkpAD93IeOjpA10lGlJp95_5nKHNfnG13HQ1lzWEClkUVBQAqjf4ixrTQFrhy2A0NFnxoFjYWCFYGgqx5HaMprIiC_q8ddL4Zla6UxpvFthlTqhfhYAlocscxf5NqkobJ7s1fd_JKGRdb1rDhfOCRz6tgAnluMVCI1kwLbNo87t_4AtTwQjESENHga2A/s1640/Untitled%20design-4.png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="924" data-original-width="1640" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkpAD93IeOjpA10lGlJp95_5nKHNfnG13HQ1lzWEClkUVBQAqjf4ixrTQFrhy2A0NFnxoFjYWCFYGgqx5HaMprIiC_q8ddL4Zla6UxpvFthlTqhfhYAlocscxf5NqkobJ7s1fd_JKGRdb1rDhfOCRz6tgAnluMVCI1kwLbNo87t_4AtTwQjESENHga2A/w640-h360/Untitled%20design-4.png" width="640" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;">This is a combination of bacterial and yeast infection. She required both an oral antibiotic (Keflex) and an antifungal (Diflucan) to clear this up.</div><br /><div><br /></div><div><br /></div><div><br /></div><div><u>WHEN THE TUBE IS TOO SMALL </u></div><div><br /></div><div>Guess what happens when you have a child going through a massive growth spurt? Any guesses? Just two months ago, Ellie had her annual tube replacement. She also packed on a bit of weight since then and all the sudden she developed this soft tissue swelling adjacent to the tube seemingly overnight. I panicked and was worried about a parastomal hernia (a hernia near an ostomy), which is actually not an uncommon thing. After a quick trip to the Bowel Clinic where she got to visit with her beloved Dr. R, the hernia was thankfully ruled out. Yes, the little Turkey still loves her doctors. Ellie's tube is officially too small/short. It is creating an indentation into her abdomen and causing soft tissue swelling and irritation. She is starting to have the beginnings of a pressure ulcer where the tube is digging into that swelling. I am now applying <a href="https://www.amazon.com/Silicone-Dressing-Pressure-Absorbent-EalionMed/dp/B08CZDDMXY/ref=sr_1_3_sspa?crid=3D6176YTQI535&keywords=meriplex+bandage&qid=1668194513&sprefix=meriple%2Caps%2C158&sr=8-3-spons&psc=1">Meriplex, a silicone foam bandage</a> under her tube to protect the skin until Interventional Radiology can fit her in for a new, larger tube. I am so frustrated because she *just* got this current Chait Trapdoor and now we need to sedate her again! Of course, my medical frequent flyer kiddo just takes all of this in stride. As long as she still can get her salad with broccoli (she's an odd duck) once she is home, she is a happy camper.</div><div><br /></div><div><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4pCeTWzIdO3SJIFBoV8yavnzZ4fBJ2a-BEmmDRNVDy7Z5qy4JCI8qNU97JXwMb8f4rYhmH64IbLhfuV2bfyoYry4HD9XxNmAmHBR1DZt_K4JZSv_Y81wD0kWzbQWK91veR5zgyRJO1nCsEjeN3YVllaqn3U_UGKrZP5kdfSt8u1UVg3yOE91UX53c_Q/s1640/Untitled%20design-2.png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="924" data-original-width="1640" height="360" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4pCeTWzIdO3SJIFBoV8yavnzZ4fBJ2a-BEmmDRNVDy7Z5qy4JCI8qNU97JXwMb8f4rYhmH64IbLhfuV2bfyoYry4HD9XxNmAmHBR1DZt_K4JZSv_Y81wD0kWzbQWK91veR5zgyRJO1nCsEjeN3YVllaqn3U_UGKrZP5kdfSt8u1UVg3yOE91UX53c_Q/w640-h360/Untitled%20design-2.png" width="640" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;">Soft tissue swelling due to the tube being too small. You can see how the tube is pushing into her abdomen. She has a Stage 1 pressure ulcer forming right where the tube is rubbing against the swelling.</div><br /><div><br /></div><div><br /></div><div>As usual, it's fun times over in our household! Fingers crossed that I hear from IR soon. Our children's health system in Austin has only ONE interventional radiologist now and so the wait may be a while. </div><div><br /></div><div><br /></div><div>More on Cecostomies:</div><div><a href="https://ellietheurer.blogspot.com/2016/12/the-pre-surgery-debacle-and.html">The pre-surgery debacle and ridiculousness</a></div><div><a href="https://ellietheurer.blogspot.com/2016/12/surgery-cecostomy.html">Surgery - Cecostomy</a></div><div><a href="https://ellietheurer.blogspot.com/2017/01/cecostomy-post-op-complications.html">Cecostomy Post-op Complications</a></div><div><a href="https://ellietheurer.blogspot.com/2017/04/the-missing-cecostomy-tube.html">The missing cecostomy tube </a></div><div><a href="https://ellietheurer.blogspot.com/2019/04/how-to-prevent-your-child-from-pulling.html">Tips on how to prevent your child from pulling out their g-tube or cecostomy tube.</a></div><div><a href="https://ellietheurer.blogspot.com/search?q=colon+manometry">Colon Manometry </a></div><div><br /></div><div><br /></div><div><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhutn4_mz7A1Z4CWWXB6e4dYa93JEcwmWgmqEFja0mWLJFmDeW87LhO6K8DiUAcRwrNuk60w2VJAA6QPhAJtpyk_b4m1LjBqHSCJUvf0YL-JQ79NH8vQWtWgWscSKqzVIbQ-wwRDzCLIM0sleHJ-d-f3R2YGQKmT1ilbX1GdN-iN02toxVf11ebBqpVpg/s3024/D91919E1-08C3-4E9F-A6CE-FF912E96B186.jpeg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3024" data-original-width="2268" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhutn4_mz7A1Z4CWWXB6e4dYa93JEcwmWgmqEFja0mWLJFmDeW87LhO6K8DiUAcRwrNuk60w2VJAA6QPhAJtpyk_b4m1LjBqHSCJUvf0YL-JQ79NH8vQWtWgWscSKqzVIbQ-wwRDzCLIM0sleHJ-d-f3R2YGQKmT1ilbX1GdN-iN02toxVf11ebBqpVpg/w300-h400/D91919E1-08C3-4E9F-A6CE-FF912E96B186.jpeg" width="300" /></a></div><br /><div><br /></div><div><br /></div>
~~~~~~~~~ <div><br /></div><div><br /></div><div><br /></div><div>While this is a Down syndrome related blog, many of the health issues and psychiatric illnesses discussed here are unique to Ellie and not necessarily related to her having Ds.* Please see more information under the Disclaimers tab.</div><div><br /></div><div><h2 class="title" style="background-color: white; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 11px; font-stretch: normal; font-variant-east-asian: normal; font-variant-numeric: normal; line-height: normal; margin: 0px 0px 1em; position: relative;">Medical Disclaimer</h2><div class="widget-content" style="background-color: white; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14px;"><span style="caret-color: rgb(84, 84, 84); font-size: small;">The information in this blog is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. All content, including text, graphics, images and information, contained on or available through this web blog is about my parental experiences with Ellie for general information purposes only. All health questions and concerns should be directed at your medical care provider.</span></div></div><div class="separator" style="clear: both; text-align: center;"><br /></div><br />Anna Theurerhttp://www.blogger.com/profile/06937391910402532608noreply@blogger.com2tag:blogger.com,1999:blog-1704406957662088168.post-879472658481435512022-10-17T09:01:00.001-05:002022-10-17T09:01:54.704-05:00The Bear is Back!<div>A kind soul reached out to me the other day offering words of encouragement and it made me realize that I have neglected this blog for *gasp* over two years and that apparently people are still reading! </div><div><br /></div><div>When Ellie was much younger, I often wondered why there were so few blogs related to older children and teenagers with Down syndrome. Now that I have *another gasp* 13 year-old Ellie Bear, I realized that life just takes over. Along with the usual school, therapies, and doctors' appointments, there are many more extracurricular activities and social events. I have recently gone back to work. Not in the medical field but a complete career change to literary PR and marketing. Yes, I realize that is pretty much the complete opposite of what my degree is in! </div><div><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-TsNbkirq2mOfeo5dm3T3CHQbmk_7bi8p8bAvFYDmIHIOImes9Al-iTcY1LxgTKmEHU252tot9DOo89XwBi3Jm04LgzuzrGQQ6slZ-lWr8mkDPgdpRqu0s6trXcOClkGPfiTRDd_3SrRloIvDl_fTXQI6bYUGj1OKaeyuOnSuNMyC07qFGNKtLA8Zpw/s3024/18A74875-22C6-4030-90BE-CCC827B588B8.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3024" data-original-width="2268" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-TsNbkirq2mOfeo5dm3T3CHQbmk_7bi8p8bAvFYDmIHIOImes9Al-iTcY1LxgTKmEHU252tot9DOo89XwBi3Jm04LgzuzrGQQ6slZ-lWr8mkDPgdpRqu0s6trXcOClkGPfiTRDd_3SrRloIvDl_fTXQI6bYUGj1OKaeyuOnSuNMyC07qFGNKtLA8Zpw/w300-h400/18A74875-22C6-4030-90BE-CCC827B588B8.jpeg" width="300" /></a></div><br /><div><br /></div><div><br /></div><div>All of the above has left less and less time to sit down and blog. Not to mention, to be perfectly honest, these blog posts took a lot of out me and took a lot of time. It can be difficult to open oneself up like that and then I wanted to ensure that I was/am respecting Ellie while also providing accurate information. While I highly doubt I will be posting very frequently, I do plan to post at least more than once every two years!</div><div><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4TcedwkAgMUsHGL-JUOUMVwGWB7qPSYK8yOhuSkVMp5i8Rx0zoyOGgkFBl7qkV6xwF47qeTFYJ6PWOszQn6LfaoY2y95XTyTQarujm_MckPcsesmm-z-8HZiRqGoBiP-29CXbIuXWjs3MZJbm4k9T5dkeZQl6HTKVWkAdvYSRCU2tYpBkksmJ95tpCg/s3024/5AB59762-C9E9-412A-8FDE-EFE813BEF523.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3024" data-original-width="2268" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4TcedwkAgMUsHGL-JUOUMVwGWB7qPSYK8yOhuSkVMp5i8Rx0zoyOGgkFBl7qkV6xwF47qeTFYJ6PWOszQn6LfaoY2y95XTyTQarujm_MckPcsesmm-z-8HZiRqGoBiP-29CXbIuXWjs3MZJbm4k9T5dkeZQl6HTKVWkAdvYSRCU2tYpBkksmJ95tpCg/w300-h400/5AB59762-C9E9-412A-8FDE-EFE813BEF523.jpeg" width="300" /></a></div><br /><div><br /></div><div>This is going to be short but I will tell you that Princess Twinkletoes is doing well! She is in the 7th grade and thriving. She still has a fair number of non-major random medical issues but we are all starting to recognize that it is "just Ellie". It feels as though once one issue is resolved, another one pops up. She has total teenage attitude with the growling, arms crossed, foot stomp when she is peeved and some days I have to search deep into my soul for patience! </div><div><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYHdTOWmBLLcBaz5tZyxR_J8a9tNZYTTENcFQidzcOUengosfr4j6F6LlICE2EwpsOv81kyU7kZpvWuWGkOJqm8JUdn2jafb82xvz0iBfkvUizrjmOscsCJ6hm4sl9-DUie55dlCHDCd9G2nkzeSDC54jir6ECu5zogjjh-Hkg68jp1AOOjhwwK8BNWw/s1800/0434FF95-03CB-4B90-A8FD-EDE95F24E8CD.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1800" data-original-width="1440" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYHdTOWmBLLcBaz5tZyxR_J8a9tNZYTTENcFQidzcOUengosfr4j6F6LlICE2EwpsOv81kyU7kZpvWuWGkOJqm8JUdn2jafb82xvz0iBfkvUizrjmOscsCJ6hm4sl9-DUie55dlCHDCd9G2nkzeSDC54jir6ECu5zogjjh-Hkg68jp1AOOjhwwK8BNWw/w320-h400/0434FF95-03CB-4B90-A8FD-EDE95F24E8CD.jpeg" title="First Day of 7th Grade" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><span style="font-family: courier;">First Day of 7th Grade</span></div><div class="separator" style="clear: both; text-align: center;"><span style="font-family: courier;"><br /></span></div><div class="separator" style="clear: both; text-align: center;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwfp3sEBEFAICqryPDfcT_K2vFHArjYcx7hsWtytyJGN2flBWh7F69CcAFs8oDaw9zPZ-sadS9DUNlkxThcYmTPHTJA1pSCgJD3F4vwso36r2XKS0oG2XTorUgDjs2XXdmhIpo3iaWYL1O8Fxs4iUOD2DZf5bbCqHHnj1J_z5JaGybkNoLIyva6b-fEA/s3024/7EF1C918-7733-48F0-875B-7073799B3765.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3024" data-original-width="2268" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwfp3sEBEFAICqryPDfcT_K2vFHArjYcx7hsWtytyJGN2flBWh7F69CcAFs8oDaw9zPZ-sadS9DUNlkxThcYmTPHTJA1pSCgJD3F4vwso36r2XKS0oG2XTorUgDjs2XXdmhIpo3iaWYL1O8Fxs4iUOD2DZf5bbCqHHnj1J_z5JaGybkNoLIyva6b-fEA/w300-h400/7EF1C918-7733-48F0-875B-7073799B3765.jpeg" width="300" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><span style="font-family: courier;">She's the Hamburglar!</span></div></div><div class="separator" style="clear: both; text-align: center;"><span style="font-family: courier;"><br /></span></div><div class="separator" style="clear: both; text-align: center;"><span style="font-family: courier;">Notice a theme? Chick-A-Boom loves her black and white stripes!</span></div><div><br /></div><div><br /></div><div>The pandemic has been tough. Having a child with an immunodeficiency is rather isolating. For a while, it felt like the world was going back to normal while we were still (and still are) being hyper vigilant. Now that we are all boostered and blood tests shows that she developed antibodies, we are starting to venture out more. </div><div><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjw89LEq0sQqh-BdImu3m3e4xSca-AnNFOpzW88P7uGBqyPzTkfIldUVFwKrTEjTVT48RRtSG_du0EKRAupXn5jM83qfOVK3hhx_bn9G4kxK-_Qe7LCJKvgYsvuBdN5Y9N4aWaZ1BM2_EW6Bgro2MyNNMmt1x3IDOcU1lvJzvC0gJgGPIy5vFX6FqW3Hw/s3703/6685CA76-B3FA-474D-B371-A17218E5F93C_1_201_a.heic" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3703" data-original-width="2777" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjw89LEq0sQqh-BdImu3m3e4xSca-AnNFOpzW88P7uGBqyPzTkfIldUVFwKrTEjTVT48RRtSG_du0EKRAupXn5jM83qfOVK3hhx_bn9G4kxK-_Qe7LCJKvgYsvuBdN5Y9N4aWaZ1BM2_EW6Bgro2MyNNMmt1x3IDOcU1lvJzvC0gJgGPIy5vFX6FqW3Hw/w300-h400/6685CA76-B3FA-474D-B371-A17218E5F93C_1_201_a.heic" width="300" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><span style="font-family: courier;">E loves her Adaptive Dance Class</span></div><div class="separator" style="clear: both; text-align: center;"><br /></div><br /><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTKURFIrhYtkhbkdmQYTO2qgbV0m7BaZMkriYN6EmtZKDVcx4tcI3uJc9oRKIdavdc-E46KeQ2YIzhscP1N8KokTEG1tpVXjRWuhj06GRg-Rk6hm0dKCP1vlBPw6jJzlFd047O1KpgJ5zp-fmZ4Tz1haIg4QCdYwPA3YfM9QOMCbFPau0F1iwL8y41dw/s3024/9EE1E796-4F7C-4A96-9D50-5B651EB4AEE9.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="3024" data-original-width="2268" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgTKURFIrhYtkhbkdmQYTO2qgbV0m7BaZMkriYN6EmtZKDVcx4tcI3uJc9oRKIdavdc-E46KeQ2YIzhscP1N8KokTEG1tpVXjRWuhj06GRg-Rk6hm0dKCP1vlBPw6jJzlFd047O1KpgJ5zp-fmZ4Tz1haIg4QCdYwPA3YfM9QOMCbFPau0F1iwL8y41dw/w300-h400/9EE1E796-4F7C-4A96-9D50-5B651EB4AEE9.jpeg" width="300" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><span style="font-family: courier;">Summer 2022 - Camp CAMP</span></div><br /><div><br /></div><div><br /></div><div>In trying to stay safe, my husband had the bright idea to buy an RV so now we are embracing the RV life. I am an old school camper - think tents whereas my husband has a great fear of bugs, birds, lack of AC and lack of WiFi. The RV is a good compromise. Ellie refers to it as the "big bus' and loves it! We have gone down to Port Aransas, TX a few times and then we went up to Wisconsin over the summer to visit my brother. . . only my brother got Covid so we didn't see him! This Christmas, we will embark on a holiday trip to California. </div><div><br /></div><div>I am hoping that all is well with all of you!</div><div><br /></div><div>~ Anna</div><div><br /></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7eUSCe4gkv6LicpuKOu0dzfl-H7gkUwaXMlWOWqoCVUSIo8qzcoRuOakB1l1tZ2jghZo3dCcFjR4AEPz6PjsLlOaW0kXBK2XazxU4Pvh8Uka1v00SQ1hNHYYw2vJkmoekfxs1FemS44_3BoKD-zmofw-gCNpKd6TBSQLCMSfpfULCIR4LJ4g3xbVaIg/s4032/104DB56E-B5A5-4314-B07A-6963AD8CE9A1.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="4032" data-original-width="3024" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7eUSCe4gkv6LicpuKOu0dzfl-H7gkUwaXMlWOWqoCVUSIo8qzcoRuOakB1l1tZ2jghZo3dCcFjR4AEPz6PjsLlOaW0kXBK2XazxU4Pvh8Uka1v00SQ1hNHYYw2vJkmoekfxs1FemS44_3BoKD-zmofw-gCNpKd6TBSQLCMSfpfULCIR4LJ4g3xbVaIg/w300-h400/104DB56E-B5A5-4314-B07A-6963AD8CE9A1.jpeg" width="300" /></a></div><br /><div><br /></div><div> </div><div><br /></div><div><br /></div><div><br /></div>
~~~~~~~~~ <div> *While this is a Down syndrome related blog, many of the health issues and psychiatric illnesses discussed here are unique to Ellie and not necessarily related to her having Ds.* Please see more information under the Disclaimers tab.</div>Anna Theurerhttp://www.blogger.com/profile/06937391910402532608noreply@blogger.com0tag:blogger.com,1999:blog-1704406957662088168.post-65266090566234448132020-07-09T16:23:00.006-05:002020-07-18T19:27:58.629-05:00A mask for kids with Down syndrome<font face="arial">
Do you hear crickets? Yes, we are here! We are alive! We are safe and healthy! We haven't been inside a restaurant or store since mid-March due to the pandemic and due to the fact that Ellie has immunology issues along with asthma and other underlying health issues. The CVS drive thru is considered a vacation at this point and I long for the days when I can go to Target and grab coffee with a friend. </font><div><font face="arial"><br /></font></div><div><font face="arial">True, I have neglected this poor blog for *gasp* 7 months and this is just a <u>quick</u> post about face masks. I had shared a pic of Ellie modeling her fancy smancy Mickey Mouse face mask on Facebook and several people asked where I got it. The truth is that I made it which I know is shocking for many because I can't even sew a straight line. You could, in theory, hand sew this mask, but I do recommend a sewing machine.</font></div><div><font face="arial"><br /></font></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVjsNr9zi7o5gY3ZnSBH2ws-KDJtSdhkhx1xJpEkdIbpfAlX03BXsAOJ-vWPIstTPkGw94615bMc6UacsUsdj36TcGYJTS33Wu63atBC5KVO2U9mFyQ5R4SnQD8UOYbV8oH2m7NHum315s/s4032/Ellie+in+a+mask.jpeg" style="margin-left: 1em; margin-right: 1em;"><font face="arial"><img border="0" data-original-height="4032" data-original-width="3024" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVjsNr9zi7o5gY3ZnSBH2ws-KDJtSdhkhx1xJpEkdIbpfAlX03BXsAOJ-vWPIstTPkGw94615bMc6UacsUsdj36TcGYJTS33Wu63atBC5KVO2U9mFyQ5R4SnQD8UOYbV8oH2m7NHum315s/w300-h400/Ellie+in+a+mask.jpeg" width="300" /></font></a></div><div><font face="arial"><br /></font><div><span></span><font face="arial"><br /></font></div><div><font face="arial">For those of you new to this blog, Ellie has Down syndrome. Her unique facial structure, such as low set ears and a flat nasal bridge can make it rather difficult for her to wear a face mask that fits well without falling down her nose or off her ears. Not rocking an extra chromosome? That's okay, this mask is also appropriate for the general population. For any mask, no matter the style, you want to make sure both the nose and mouth are completely covered and fits snug on all sides.</font></div><div><font face="arial"><br /></font></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYARLjggeT3gBvD1RMN9xUy5Ajd_3AvSLmhg1-6yJTocOeRyKQM_PLdmOC5nFmZYX4TJ4nT0EHaY6mCP5CKMmofTJqG6R7Miw25U1IBB8SOumolMYqrcdzsgNQ4OwENKwwqg6UDPpM0kDC/s4032/IMG_1448.jpeg" style="margin-left: 1em; margin-right: 1em;"><font face="arial"><img border="0" data-original-height="4032" data-original-width="3024" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYARLjggeT3gBvD1RMN9xUy5Ajd_3AvSLmhg1-6yJTocOeRyKQM_PLdmOC5nFmZYX4TJ4nT0EHaY6mCP5CKMmofTJqG6R7Miw25U1IBB8SOumolMYqrcdzsgNQ4OwENKwwqg6UDPpM0kDC/w300-h400/IMG_1448.jpeg" title="These are the types of masks that I tried with Ellie: a tie mask, ear loops, and elastic around the head" width="300" /></font></a></div><div class="separator" style="clear: both; text-align: center;"><font face="arial">I tried the 3 masks above on Ellie:</font></div><div class="separator" style="clear: both; text-align: center;"><font face="arial">Top: tie mask</font></div><div class="separator" style="clear: both; text-align: center;"><font face="arial">Middle: ear loops</font></div><div class="separator" style="clear: both; text-align: center;"><font face="arial">Bottom: elastic around the head</font></div><div class="separator" style="clear: both; text-align: center;"><font face="arial"><br /></font></div><div><font face="arial"><br /></font></div><div><font face="arial">I originally started working on those tie behind the head pleated masks with a pocket for a filter. A google search produced several tutorials so I just went with the first one that popped up. I hated having to constantly retie them so I tried those draw string clamps things (see below) to make it easier. I also used bias tape for the ties because I was lazy, but you can make your own ties. While it works fabulously for me and Ellie adored her cupcake one, it kept sliding down her nose even with using wire for a nose strip. </font></div><div><font face="arial"><br /></font></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwzlxFE4IlM-wCxO4dqR02GOdBzg2RfpcCfhtGOc8gyPasE7sgD2hWv3wMMCwp3q11mECyU33VhDjil0tFupKLiYxDn8uep5J3xjUNsijQcSLN9KJyFomdAwoXTboNm_mKHJZfZ5MP78jX/s3088/IMG_0743.jpeg" style="margin-left: 1em; margin-right: 1em;"><font face="arial"><img border="0" data-original-height="3088" data-original-width="2316" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjwzlxFE4IlM-wCxO4dqR02GOdBzg2RfpcCfhtGOc8gyPasE7sgD2hWv3wMMCwp3q11mECyU33VhDjil0tFupKLiYxDn8uep5J3xjUNsijQcSLN9KJyFomdAwoXTboNm_mKHJZfZ5MP78jX/s320/IMG_0743.jpeg" /></font></a></div><div><font face="arial"><br /></font></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhEybRFM3ihQ9Rup4-AdDqI5xGA4cW1fJnQ_LzXwS5svevZLVrUqNrJCqW_xiYNro9ZjfGEoFpP-OL-FlSFGofzANCB1Rw70XbhDAOHwBKYfJkHjoY4Dib9tdxJQXf1E2_L7-s5JMdvw9k/s866/Screen+Shot+2020-07-09+at+3.18.25+PM.png" style="margin-left: 1em; margin-right: 1em;"><font face="arial"><img border="0" data-original-height="652" data-original-width="866" height="154" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjhEybRFM3ihQ9Rup4-AdDqI5xGA4cW1fJnQ_LzXwS5svevZLVrUqNrJCqW_xiYNro9ZjfGEoFpP-OL-FlSFGofzANCB1Rw70XbhDAOHwBKYfJkHjoY4Dib9tdxJQXf1E2_L7-s5JMdvw9k/w205-h154/Screen+Shot+2020-07-09+at+3.18.25+PM.png" width="205" /></font></a></div><div><font face="arial"><br /></font></div><div><font face="arial"><br /></font></div><div style="text-align: center;"><font face="arial">Plastic Toggle Rope Locks: </font></div><div style="text-align: center;"><a href="https://www.amazon.com/gp/product/B07C4FPY1G/ref=ppx_yo_dt_b_asin_title_o05_s00?ie=UTF8&psc=1"><font face="arial">https://www.amazon.com/gp/product/B07C4FPY1G/ref=ppx_yo_dt_b_asin_title_o05_s00?ie=UTF8&psc=1</font></a></div><div><font face="arial"><br /></font></div><div><font face="arial">That led me to trying the over-the-ear loops. After an extended search on google, I found an excellent video tutorial from <a href="https://www.youtube.com/watch?time_continue=5&v=zoPSXaLKCNE&feature=emb_title">EasyToSew</a> that was easy to follow along. This is the video that I am now using for all of my face masks. The video towards the bottom of this post.</font></div><div><font face="arial"><br /></font></div><div><font face="arial">Anyway, behind the ear loop mask was an epic fail. With her low set ears, common in people with Ds, the mask wouldn't completely cover her nose. As you know, the mask won't do much good if you don't cover your nose! Then there was the part where the elastic wouldn't stay around her ears. The damn thing just kept falling off. Even though the ear loops didn't work, I really liked how fitted the mask was. (This is actually the mask that I currently wear for myself). </font></div><div><font face="arial"><br /></font></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsDFvNbI1qqDyUhL05jA9KqowVki9PCbImgJpRshA8YTDEWS1a87GpQ-zq0qYCNxJjkD4k2mIOcQsiBkgBnIyOYQDZYXWTR8_a15loM4_pEmLGSHUderDAhm2i7GHU187J3_dMYPEvVuqJ/s4032/IMG_0873.jpeg" style="margin-left: 1em; margin-right: 1em;"><font face="arial"><img border="0" data-original-height="4032" data-original-width="3024" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsDFvNbI1qqDyUhL05jA9KqowVki9PCbImgJpRshA8YTDEWS1a87GpQ-zq0qYCNxJjkD4k2mIOcQsiBkgBnIyOYQDZYXWTR8_a15loM4_pEmLGSHUderDAhm2i7GHU187J3_dMYPEvVuqJ/s320/IMG_0873.jpeg" /></font></a></div><div class="separator" style="clear: both; text-align: center;"><font face="arial">I liked the fit of this mask, but it wouldn't say over her nose.</font></div><div><font face="arial"><br /></font></div><div><font face="arial">I used <a href="https://www.youtube.com/watch?v=zoPSXaLKCNE">this video</a> for the basic pattern and construction of the mask. The pattern in the video is perfect for an adult so you will have to make a few adjustments for a child or an adult with a larger head. I also eliminated the elastic for the ear loops and instead attached longer elastic to go completely around the head.</font></div><div><font face="arial"><br /></font></div><div><font face="arial">This is a tri-layer mask meaning there are 3 layers of fabric. The third layer also serves as a pocket if you want to insert a filter. I use a coffee filter folded in half. If you use a filter, you must change it out each time you use it.</font></div><div class="separator" style="clear: both; text-align: center;"><font face="arial"><br /></font></div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgs6S-Gt_7VczQfKcSFvi8dPkbUR6ckSw59_5th8CckDHdzBpq_LgFQG3CJ_81Ld5r44UzvqYElNEQp2J3KZg88dDQZ0vgbr_IoSH3q-LNbKixg1ZhnFrYxN1Qb9xVk0ceV1sBmfW-M_J6D/s558/Screen+Shot+2020-07-09+at+3.44.37+PM.png" style="margin-left: 1em; margin-right: 1em;"><font face="arial"><img border="0" data-original-height="536" data-original-width="558" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgs6S-Gt_7VczQfKcSFvi8dPkbUR6ckSw59_5th8CckDHdzBpq_LgFQG3CJ_81Ld5r44UzvqYElNEQp2J3KZg88dDQZ0vgbr_IoSH3q-LNbKixg1ZhnFrYxN1Qb9xVk0ceV1sBmfW-M_J6D/s320/Screen+Shot+2020-07-09+at+3.44.37+PM.png" width="320" /></font></a></div><font face="arial"><br /></font><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7mja7NemMKk7K69F5TQ-w6A0TlhbKMtWH3P1s1MzcOMQhXBbJ1mk2aPO0TdoTUsddixA8uGAEVc7exqpS3LU29q7FjvFo8Z9ZhToHxm6KdKMscClakYjO-qXlINiEtKTc0mw9q2PYGNEB/s642/Screen+Shot+2020-07-09+at+3.44.53+PM.png" style="margin-left: 1em; margin-right: 1em;"><font face="arial"><img border="0" data-original-height="642" data-original-width="548" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7mja7NemMKk7K69F5TQ-w6A0TlhbKMtWH3P1s1MzcOMQhXBbJ1mk2aPO0TdoTUsddixA8uGAEVc7exqpS3LU29q7FjvFo8Z9ZhToHxm6KdKMscClakYjO-qXlINiEtKTc0mw9q2PYGNEB/s320/Screen+Shot+2020-07-09+at+3.44.53+PM.png" /></font></a></div><div class="separator" style="clear: both; text-align: center;"><font face="arial"><br /></font></div><div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="caret-color: rgb(5, 5, 5); color: #050505; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto; white-space: pre-wrap;"><div dir="auto"><font face="arial">
<iframe allow="accelerometer; autoplay; encrypted-media; gyroscope; picture-in-picture" allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/zoPSXaLKCNE" width="560"></iframe></font></div><div dir="auto"><font face="arial"><br /></font></div><div dir="auto"><font face="arial">Pattern: I cut out the pattern as shown in the video. For Ellie, I then shortened each side on the end by 1.5 cm so that it would fit her smaller face. I did not make any changes in the top-bottom dimensions. (For adults with larger heads, I added 1.5 cm)</font></div><div dir="auto"><font face="arial"><br /></font></div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="caret-color: rgb(5, 5, 5); color: #050505; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto; white-space: pre-wrap;"><div dir="auto"><font face="arial">For the nasal wire, I use aluminum nose strips that you often see on medical masks - the ones without adhesive. I did use two pieces of floral wire early on, but the wire eventually breaks and pokes through the fabric. </font></div><div dir="auto"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGdgTE-95bg7e6ybsQjxYGxyXdw3GKVOjYlzC3xvftVtIwoVnr_yvm7jd5CtBGgoh2B5Zmhy_ggLgmCwdbB-X0ANQAQ2-aR1zqDW3PYywlXMDVH1yMtaLfH7mkSCGmrHarOPNDvSPSD-Ep/s1126/Screen+Shot+2020-07-09+at+3.29.32+PM.png" style="margin-left: 1em; margin-right: 1em;"><font face="arial"><img border="0" data-original-height="1024" data-original-width="1126" height="186" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGdgTE-95bg7e6ybsQjxYGxyXdw3GKVOjYlzC3xvftVtIwoVnr_yvm7jd5CtBGgoh2B5Zmhy_ggLgmCwdbB-X0ANQAQ2-aR1zqDW3PYywlXMDVH1yMtaLfH7mkSCGmrHarOPNDvSPSD-Ep/w205-h186/Screen+Shot+2020-07-09+at+3.29.32+PM.png" width="205" /></font></a></div><font face="arial"><br /></font></div><div dir="auto" style="text-align: center;"><font face="arial">Here is the link to the strips on Amazon: <a class="oajrlxb2 g5ia77u1 qu0x051f esr5mh6w e9989ue4 r7d6kgcz rq0escxv nhd2j8a9 nc684nl6 p7hjln8o kvgmc6g5 cxmmr5t8 oygrvhab hcukyx3x jb3vyjys rz4wbd8a qt6c0cv9 a8nywdso i1ao9s8h esuyzwwr f1sip0of lzcic4wl py34i1dx gpro0wi8" href="https://l.facebook.com/l.php?u=https%3A%2F%2Fwww.amazon.com%2Fgp%2Fproduct%2FB087C2GJYH%2Fref%3Dppx_yo_dt_b_search_asin_title%3Fie%3DUTF8%26psc%3D1%26fbclid%3DIwAR2Zpon2xpL7ETQk6-Jm38r80dOgEuB6KUo2uK5FsB0Rg2m4YT8Ag_7p-e0&h=AT0ufRUkggStdVnyfMyOLfnxm4rL6PtdzawBNtGNn94z--ED6NYYBDeCKp6PeCwNlcUtQXUphbUilZZDnA_te0YRaDowJAfR1xoftv3T6gbgyGhFQd-9YWx7Yi9ejjFOaRiQd-M&__tn__=-UK-R&c[0]=AT1cIc4sLHHMKXE9kXcCWitLqouyKkPD4r0jVZI8k7XzO4pXIiTceir1g5GhnhbQ38d3ju_LjBKvgVzYpBexi_FfhYkcRWNanjiP8P-XqO3RLtXOncBcx3iPtJFLf4TTrAcdK5FsmP9vSJz4nUXcSQ" rel="nofollow noopener" role="link" style="border: 0px; box-sizing: border-box; cursor: pointer; display: inline; list-style: none; margin: 0px; outline: none; padding: 0px; text-align: inherit; text-decoration-line: none; touch-action: manipulation;" tabindex="0" target="_blank">https://www.amazon.com/gp/product/B087C2GJYH/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1</a></font></div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="caret-color: rgb(5, 5, 5); color: #050505; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto; white-space: pre-wrap;"><div dir="auto"><font face="arial"><br /></font></div><div dir="auto"><font face="arial">Instead of using elastic for ear loops, I had the elastic go all around her head. I used 1/4 inch flat elastic (also on amazon). Ellie is 10 years-old and has a relatively small head so I went with:</font></div><div dir="auto"><font face="arial"><br /></font></div><div dir="auto" style="text-align: center;"><font face="arial">Upper elastic strip: 11 inches</font></div><div dir="auto" style="text-align: center;"><font face="arial"><span>Lower elastic strip: 8 inches</span><font style="text-align: left;"> </font></font></div><div dir="auto" style="text-align: center;"><font face="arial"><br /></font></div><div dir="auto" style="text-align: left;"><font face="arial">You want to make sure that the elastic is snug enough that the mask will stay in place, but not so tight that if feels like her head is in a vice. You may need to play around with the lengths. If you aren't sure, it is easier to use longer elastic strips and then tighten it if need be.</font></div><div dir="auto"><font face="arial"><br /></font></div><div dir="auto"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxCpHQkJobSsm4pJzWQ2LFhk_ea0EhpQHNAY3rJ8EMYIHq6lXO1VAirYs__LCU4lUU-dRVtf3hOc_EyF7-O9zAW527ZycQ82Sra2PUtBaAvVIGrQXn6hZofooSf3vmeu07nFnalwdzGXNz/s2919/IMG_1519.jpeg" style="margin-left: 1em; margin-right: 1em;"><font face="arial"><img border="0" data-original-height="2919" data-original-width="2816" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxCpHQkJobSsm4pJzWQ2LFhk_ea0EhpQHNAY3rJ8EMYIHq6lXO1VAirYs__LCU4lUU-dRVtf3hOc_EyF7-O9zAW527ZycQ82Sra2PUtBaAvVIGrQXn6hZofooSf3vmeu07nFnalwdzGXNz/s320/IMG_1519.jpeg" /></font></a></div><font face="arial"><br /></font></div><div dir="auto" style="text-align: center;"><font face="arial"><br /></font></div><div dir="auto" style="text-align: center;"><font face="arial" style="border: 0px; box-sizing: border-box; cursor: pointer; display: inline; list-style: none; margin: 0px; outline: none; padding: 0px; text-align: inherit; text-decoration-line: none; touch-action: manipulation;">1/4 Inch flat elastic: <a class="oajrlxb2 g5ia77u1 qu0x051f esr5mh6w e9989ue4 r7d6kgcz rq0escxv nhd2j8a9 nc684nl6 p7hjln8o kvgmc6g5 cxmmr5t8 oygrvhab hcukyx3x jb3vyjys rz4wbd8a qt6c0cv9 a8nywdso i1ao9s8h esuyzwwr f1sip0of lzcic4wl py34i1dx gpro0wi8" href="https://l.facebook.com/l.php?u=https%3A%2F%2Fwww.amazon.com%2Fgp%2Fproduct%2FB078SC5RVQ%2Fref%3Dppx_yo_dt_b_search_asin_title%3Fie%3DUTF8%26psc%3D1%26fbclid%3DIwAR0cr7e96zn7lfukum-p7PHxZNgeLAyu7dEGRYFLBsf6ig2Iil5jVmbBFJ8&h=AT2Qy_Ei1HnSnxvpYOkBdy9qZX8FT1s7g8w3tnMCxV7lZWGuZM6k2p6KtGre8O5hRqpD3Vcy8GjQctJsQ2Vm3zjkD8dv7XsUxxE9bv68ZTu1DmM6foqYHcUQndr4DaJHF_yA3xY&__tn__=-UK-R&c[0]=AT1cIc4sLHHMKXE9kXcCWitLqouyKkPD4r0jVZI8k7XzO4pXIiTceir1g5GhnhbQ38d3ju_LjBKvgVzYpBexi_FfhYkcRWNanjiP8P-XqO3RLtXOncBcx3iPtJFLf4TTrAcdK5FsmP9vSJz4nUXcSQ" rel="nofollow noopener" role="link" style="border: 0px; box-sizing: border-box; cursor: pointer; display: inline; list-style: none; margin: 0px; outline: none; padding: 0px; text-align: inherit; text-decoration-line: none; touch-action: manipulation;" tabindex="0" target="_blank">https://www.amazon.com/gp/product/B078SC5RVQ/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1</a></font></div><div dir="auto" style="text-align: center;"><font face="arial"><br /></font></div><div dir="auto" style="text-align: center;"><font face="arial"><br /></font></div><div dir="auto" style="text-align: left;"><font face="arial">Finally, after you've done all of that and your kiddo still refuses to wear the mask, you can check out <a href="https://youtu.be/h6T75jZ6v3I">these tips</a>: </font></div></div><div class="o9v6fnle cxmmr5t8 oygrvhab hcukyx3x c1et5uql ii04i59q" style="caret-color: rgb(5, 5, 5); color: #050505; margin: 0.5em 0px 0px; overflow-wrap: break-word; text-size-adjust: auto; white-space: pre-wrap;"><div dir="auto"><font face="arial"> </font></div></div></div></div>
<font face="arial"><iframe allow="accelerometer; autoplay; encrypted-media; gyroscope; picture-in-picture" allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/h6T75jZ6v3I" width="560"></iframe></font>Anna Theurerhttp://www.blogger.com/profile/06937391910402532608noreply@blogger.com0tag:blogger.com,1999:blog-1704406957662088168.post-73841142083942762042019-12-24T09:03:00.001-06:002019-12-24T09:03:49.166-06:00Happy Holidays<div style="text-align: center;"><img src="https://drive.google.com/uc?export=view&id=1m0DvozwcgWtGCFcownX9BKLjnmehptsI" alt="https://drive.google.com/uc?export=view&id=1m0DvozwcgWtGCFcownX9BKLjnmehptsI" style="max-height: 80%; max-width: 80%; height: auto; width: auto;"><br></div><div style="text-align: center;"><br></div><div style="text-align: center;"><span style="color: rgb(230, 25, 75);"><span style="font-size: large;"><b>May you all have a wonderful, safe, healthy, and relaxing Holiday season full of laughter, love, and copious amounts of coffee!</b></span></span></div>Anna Theurerhttp://www.blogger.com/profile/06937391910402532608noreply@blogger.com6tag:blogger.com,1999:blog-1704406957662088168.post-6665905056595199632019-12-01T08:00:00.000-06:002019-12-01T08:00:01.576-06:00I have no idea what I am doing: fostering independenceI really wish that parenthood came with an instruction manual. Only modify that manual to be about special needs parenting and have it contain the knowledge and wisdom of a parents, teachers, psychiatrists, occupational therapists, speech therapists, patient advocates, and well, everyone!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9wbPmODpIk_J0md9O9wf7L6wv29JALyOmqdM9NdLhbDEhNGERtTwTEEloHogDw4bMRRAP0mzk9wCGfmScA1BVyzLqer3QmSibWl1ZgWtW2hlLOPq4X52tQMLnuHi4PetOxjk6M2bWW-Cz/s1600/IMG_0398.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9wbPmODpIk_J0md9O9wf7L6wv29JALyOmqdM9NdLhbDEhNGERtTwTEEloHogDw4bMRRAP0mzk9wCGfmScA1BVyzLqer3QmSibWl1ZgWtW2hlLOPq4X52tQMLnuHi4PetOxjk6M2bWW-Cz/s400/IMG_0398.jpeg" width="300" /></a></div>
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All children are unique individuals with their own strengths and struggles so really you cannot lump them all into one group, but I do wish that I had some guidance. I honestly have no idea what I am doing here when it comes to teaching Ellie life skills. Am I doing too much for her and holding her back? Or are my expectations too high? <br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiplgOg0vcC9kH_F1o2WfeNumFaEaBfuJ-EEr1K0tlTaEIm2qLqn704ptPcbsL0yp4TJ1gLv0Y214bVqyLvgZ-j6l5zmocsgQYthCeha1-F1XnGHNdh_ezyLM8utJ_C8zZLXHG37mPGlJeo/s1600/IMG_0236.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiplgOg0vcC9kH_F1o2WfeNumFaEaBfuJ-EEr1K0tlTaEIm2qLqn704ptPcbsL0yp4TJ1gLv0Y214bVqyLvgZ-j6l5zmocsgQYthCeha1-F1XnGHNdh_ezyLM8utJ_C8zZLXHG37mPGlJeo/s400/IMG_0236.jpeg" width="298" /></a></div>
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My goal, like most parents, is to help my child to be come self sufficient. She already is and will be capable of a great many things and while I am not under the delusion that Ellie will grow up, move across the country and live 100% independently without any supervision, I do want to foster her independence as much as possible. What that will look like in the future -whether she lives in a nearby apartment nearby with someone checking in on her vs. a group home vs. living with us, I do not know. The thing is, I have absolutely not idea how to identify and teach her the necessary life skills to set her up for success.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifD9QNBPTPdwQ16s58AekjdxTEhHs-KQEpr7JwUFCFzIGKEu_TjPKfxkYjamLqGrzfIUNEFCP2akieytuul43tMLAhew4DqFndW5zNCluM-SsqHQaggJ_ayMSBFeg82McW4v-Za3SxPe2a/s1600/IMG_0529.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1600" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifD9QNBPTPdwQ16s58AekjdxTEhHs-KQEpr7JwUFCFzIGKEu_TjPKfxkYjamLqGrzfIUNEFCP2akieytuul43tMLAhew4DqFndW5zNCluM-SsqHQaggJ_ayMSBFeg82McW4v-Za3SxPe2a/s400/IMG_0529.jpeg" width="400" /></a></div>
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Right now, I have the following short-term goals in mind:<br />
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A. Be able to make her own "meals" (a Nutella sandwich is a meal - don't judge!)<br />
<br />
<ol>
<li>Able to remove bread from package</li>
<li>Open/close the Nutella jar (she's getting there!)</li>
<li>Properly hold knife to remove Nutella from jar and spread onto bread</li>
<li>Be able to open a package of food (i.e. remove the wrapper from a nutrition bar)</li>
<li>Be able to unscrew the top to her supplemental nutritional shake</li>
</ol>
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B. Get this kiddo poop trained!<br />
<br />
<ul>
<li>First and foremost, this is out of my control and Ellie's control given her complex GI history and colon situation, but it is a goal nonetheless.</li>
</ul>
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C. Able to change her bedding and put her clean laundry in the correct drawers<br />
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<ul>
<li>Bonus points for folding.</li>
</ul>
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D. Drink from an open cup with all of the contents ending up on the floor or herself.<br />
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E. Understand the concept of time.<br />
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<ul>
<li>Ellie can read both an analog and digital clock to the 1/2 hour mark, but she doesn't really under the concept of time. For instance, if I were to say that Kyla comes at 4:00, she does not understand that. If I say you've got 5 more minutes, she only seems to grasp it if I set a timer.</li>
</ul>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWQWQm8tk-wrtkg5tZ9xha-kZXsFV3j3OLeIHLpJ8mWEgayCe_NVgjc65lGqar_DmRBq13C-zbiBr4nErKyNNk2aKN-FpMFqc4DnQ4Kgehtdh2LnT2ZuDDsXqTJOZ251bUR57CRxb4sgqg/s1600/C1154611-5770-45E2-A626-F73F1DEE4017.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1600" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiWQWQm8tk-wrtkg5tZ9xha-kZXsFV3j3OLeIHLpJ8mWEgayCe_NVgjc65lGqar_DmRBq13C-zbiBr4nErKyNNk2aKN-FpMFqc4DnQ4Kgehtdh2LnT2ZuDDsXqTJOZ251bUR57CRxb4sgqg/s400/C1154611-5770-45E2-A626-F73F1DEE4017.jpeg" width="400" /></a></div>
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Sounds easy, right? It isn't. I have a 10 year-old daughter who thinks like a 4 year-old with the fine motor skills and receptive language understanding of a 3 year-old. Are the goals that I have set for her appropriate for her developmental level? Am I pushing her too much or not enough? I feel like a horrible parent when I think it would be so much easier and faster to just do it for her (obviously, I am trying to avoid the "just doing it for her"). <br />
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Oh and by the way, do not google "<i>how to use a knife</i>" or you will get some weird and disturbing results.<br />
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This brings me to changing my mindset. Rather than focusing and lamenting about what she can't do (<i>yet</i>), instead let's celebrate what she can do all while trying to figure out how to give her the tools the she needs to succeed. . . . once I figure out what those tools are, that is.<br />
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<span style="font-family: "courier new" , "courier" , monospace;">After all, she has already attained several life skills in the past few years and I know that she will continue to gain more!</span><br />
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What she has already accomplished:<br />
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<li>Laundry - This kiddo has been using the washing machine with minimal assistance for years now. I need to work on the whole folding clothes and sorting thing. Also, I need to keep reminding her that if she is going to wash a lovey, she should wash her other dirty clothes at the same time. As in, do not do an entire wash cycle for 1 blankie!</li>
<li>Cleans house - dust, wipes counters, sweeps/mops floor</li>
<li>Orders food at a restaurant - this is where her speech device comes in handy</li>
<li>Swallow pills</li>
<li>Administer her inhaler with assistance</li>
<li>Makes her enema for her cecostomy tube</li>
<li>Differentiates between trash and recycling (can someone educate my husband that cardboard can be recycled and styrofoam cannot?)</li>
<li>Able to get dressed, including socks and shoes</li>
<li>Able to put on jacket and pull up zipper</li>
<li>Uses a key to unlock doors - while this is good, it also means she is now able to get into my office!</li>
<li>Packs her lunch - granted her idea of a lunch includes an entire bag of grapes, a bag of baby carrots and an unwrapped zone bar, but at least she didn't forget the ice pack!</li>
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So. . . if anyone has that special needs parenting instruction manual please send it on over to me!</div>
<br />Anna Theurerhttp://www.blogger.com/profile/06937391910402532608noreply@blogger.com6tag:blogger.com,1999:blog-1704406957662088168.post-20856322380189769492019-10-07T05:30:00.000-05:002019-10-07T05:30:08.159-05:00October is Down Syndrome Awareness Month: The Many Faces of Down Syndrome<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifjLfLnucggpVavjfXINKRp5ypNv68bK4SqAc7gW-llcL4nat4nhiXNfzd1PLg30jWAiiKghujkbGxDTTDjqH0xF18Jinx-4ZFuwi0cuMsL7FGoyt38NnkLqmbHj9kfmvSAh73pv86PkvT/s1600/DS-Awareness-Month.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="315" data-original-width="851" height="236" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEifjLfLnucggpVavjfXINKRp5ypNv68bK4SqAc7gW-llcL4nat4nhiXNfzd1PLg30jWAiiKghujkbGxDTTDjqH0xF18Jinx-4ZFuwi0cuMsL7FGoyt38NnkLqmbHj9kfmvSAh73pv86PkvT/s640/DS-Awareness-Month.jpg" width="640" /></a></div>
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<span style="font-family: inherit;">October is Down Syndrome Awareness month and to celebrate, I'd like to introduce you to some of the members of this amazing community that I became a part of when Ellie was born with Ds. <span style="background-color: white; color: #222222;">While all people with Down syndrome carry 3 copies of the 21st chromosome and share some facial features, they are all unique individuals just like everyone else. They look like their family members and they have their own interests and strengths. </span></span></div>
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<span style="background-color: white; caret-color: rgb(68, 73, 80); text-align: start; white-space: pre-wrap;"><span style="font-family: inherit;">Wyatt is 10 years old. He loves his big brothers, walking on the beach, reading, superheroes and playmobil!</span></span></div>
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<span style="font-family: inherit;">Camryn goes by Cammie and is 8 years-old. She loves the dirt, rocks, popsicles, swinging, and sliding. She is all and all full of energy, happiness, and love.</span><br />
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<span style="background-color: white; text-align: left; white-space: pre-wrap;"><span style="font-family: inherit;">Hannah is 18, a senior in high school. Hannah loves singing, dancing and drama. Plus bowling and tennis. We have just been given the exciting news that Hannah is on the Homecoming court!</span></span></div>
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<span style="text-align: left;"><span style="background-color: white; white-space: pre-wrap;"><span style="font-family: inherit;">Ishika Pande is 10 years old and she loves dancing . Isla is learning an advanced level of Indian classical dance and has had more than 20 performances on stage solo and group from age of 6 . Other than that she loves talking a lot , cooking her own recipes and dressing up. </span></span></span></div>
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<span style="background-color: white; color: #1c1e21; text-align: left;"><span style="font-family: inherit;">Ian is 9 years old. He loves school ,swimming, and the park. Ian is quite the social butterfly!</span></span></div>
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<span style="font-family: inherit;"><span style="background-color: white; color: #1c1e21;">Kayla is 16 years old and loves archery, golf, baseball, swimming, coloring, dancing, and her younger brother!</span></span></div>
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Ruby is 8 years-old. She loves dancing, her pet dogs, and slushees!</div>
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<span style="background-color: white; text-align: left; white-space: pre-wrap;"><span style="font-family: inherit;">Amber is 9 years-old and she loves swimming. </span></span></div>
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<span style="background-color: white; text-align: left; white-space: pre-wrap;"><span style="font-family: inherit;">She has the nickname of AwesomeAmberSkye!</span></span><span style="background-color: white; text-align: left; white-space: pre-wrap;"><span style="font-family: inherit;"><br /></span></span></div>
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<span style="background-color: white; text-align: left; white-space: pre-wrap;"><span style="font-family: inherit;">Alex is a 24 year-old senior in the MasonLife program at George Mason University. He likes sports especially swimming and basketball. He likes hanging out with his friends, playing video games, going movies and going to parties or just grabbing a couple of beers and watching football on the weekends.</span></span></div>
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<span style="background-color: white; color: #1c1e21; text-align: left;"><span style="font-family: inherit;">Avery is 12 years-old. She loves school, basketball, swimming and cheerleading.</span></span></div>
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<span style="background-color: white; text-align: left;"><span style="color: #1c1e21; font-family: , , "blinkmacsystemfont" , , sans-serif;"><span style="caret-color: rgb(28, 30, 33);">Julian is 9 years old and he loves to color, draw, and read. </span></span></span></div>
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<span style="background-color: white; text-align: left;"><span style="color: #1c1e21; font-family: , , "blinkmacsystemfont" , , sans-serif;"><span style="caret-color: rgb(28, 30, 33);">He enjoys gymnastics, dance, swim, and making silly jokes.</span></span></span></div>
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<span style="background-color: white; color: #1c1e21; text-align: left;"><span style="font-family: inherit;">Cora is 8 years-old. She loves puzzles, music, and reading.</span></span></div>
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<span style="font-family: inherit;"><span style="color: #1c1e21; text-align: left;">Ellyssandra Corinne aka Sissy is 8 year-old baby B of surviving triplets. Elly loves music to dance and singing and signing her favorite song. She loves Moana and Mary Poppins and swimming and running. Elly loves hanging with her animals her dogs Bi</span><span style="color: #1c1e21; text-align: left;">lly (which was Elly's first word) and Daisy. Elly is good friend and happy girl ahe has enriched our lives and taught us so much. Mommy and daddy and big brother Jorge Jr. ^^8^^ and your little brother Rory couldn't be prouder of you Sissy. <span class="_5mfr" style="margin: 0px 1px;"><span class="_6qdm" style="background-image: url("https://static.xx.fbcdn.net/images/emoji.php/v9/tb/2/16/1f499.png"); background-repeat: no-repeat no-repeat; background-size: contain; color: transparent; display: inline-block; height: 16px; text-shadow: none; vertical-align: text-bottom; width: 16px;">đź’™</span></span><span class="_5mfr" style="margin: 0px 1px;"><span class="_6qdm" style="background-image: url("https://static.xx.fbcdn.net/images/emoji.php/v9/t88/2/16/1f496.png"); background-repeat: no-repeat no-repeat; background-size: contain; color: transparent; display: inline-block; height: 16px; text-shadow: none; vertical-align: text-bottom; width: 16px;">đź’–</span></span><span class="_5mfr" style="margin: 0px 1px;"><span class="_6qdm" style="background-image: url("https://static.xx.fbcdn.net/images/emoji.php/v9/tb/2/16/1f499.png"); background-repeat: no-repeat no-repeat; background-size: contain; color: transparent; display: inline-block; height: 16px; text-shadow: none; vertical-align: text-bottom; width: 16px;">đź’™</span></span>Triplets Forever</span></span></div>
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Benji is 9 years-old and loves playing with his siblings. </div>
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He loves books, music, and nerf guns.</div>
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<span style="font-family: inherit;">This is Ellie aka Ellie Bellie Bear aka Princess Twinkletoes and she is 10 years-old. She fancies herself to be a singer and fashionista. She loves to dance, swim, and ride horses.</span></div>
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<div style="-webkit-text-stroke-color: rgb(0, 0, 0); -webkit-text-stroke-width: initial; caret-color: rgb(34, 34, 34); color: #222222; font-size: 16px; font-stretch: normal; line-height: normal; text-align: center;">
<span style="-webkit-font-kerning: none;"><span style="font-family: inherit;">12/27/1958 - 12/14/2012</span></span></div>
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<span style="-webkit-font-kerning: none;"><span style="font-family: inherit;">This blog post is in loving memory of my Aunt Peggy. Peggy loved bowling, swimming, and listening to John Denver. She passed away just a few days before her 54th birthday in 2012. She was a beloved daughter, sister, aunt, and great aunt. Peggy, you are forever loved and forever missed.</span></span></div>
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Anna Theurerhttp://www.blogger.com/profile/06937391910402532608noreply@blogger.com8tag:blogger.com,1999:blog-1704406957662088168.post-7512712612896154342019-09-26T14:07:00.000-05:002019-09-26T14:07:37.967-05:00Everybody poops. . . or not<b><span style="color: #444444;">Welcome to another episode of "<i>Why Won't My Child Poop</i>?" </span></b><br />
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Today's cast of characters feature Ellie Bear, a distraught Mama Bear, clueless ER staff, members of the Comprehensive Care Clinic, and a jolly x-ray technician.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsKCr2m_o3rLYbMkuVVwe5kUksKeKGhs6V1AW2MnROaaa4rOEuJfzFBzKfjvwvcqyBaCrsZdoyBLvpwY9sjt0jX3kN5bc3VQMmsbmn4NyOb_Fs2IlKeiiFFZNDqW4vdFzea_IQ8KOwgUkm/s1600/Vd%2525f0r1oR%2525mftr5VnTVKFQ.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsKCr2m_o3rLYbMkuVVwe5kUksKeKGhs6V1AW2MnROaaa4rOEuJfzFBzKfjvwvcqyBaCrsZdoyBLvpwY9sjt0jX3kN5bc3VQMmsbmn4NyOb_Fs2IlKeiiFFZNDqW4vdFzea_IQ8KOwgUkm/s400/Vd%2525f0r1oR%2525mftr5VnTVKFQ.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Want to know why this little Turkey is smiling? This is outside Dell Children's Medical Center. <br /> She was there for her appt with Dr. Simon. Elli is in <i>luv</i> with him. </td></tr>
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<span style="font-family: Courier New, Courier, monospace;">First, a little background:</span><br />
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I am unfortunately known among many parenting groups as "the poop guru" (seriously who wants that title as their claim to fame?) as I can pretty much get any child to poop. . . except my own. <br />
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Remember way back when Ellie went 22 days without defecating? Well, by end of August we were back to that. Okay, that is an over exaggeration as this go around it was more like 6 days, but given her surgical intervention from 2 years and 9 months ago, constipation shouldn't even be an issue.<br />
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Sadly, all of my experience as a former pediatric nurse practitioner and working closely with her gastroenterologist pretty much amounted to big amount of nothing in the Bear's land of excrement. For those of you who have been following this blog for a while, then you are aware of such lengths we went to in the past to regulate Ellie's GI tract and we now know that she has what is called <a href="https://ellietheurer.blogspot.com/search?q=manometry">moderate-to-severe delayed colonic transit</a>. That's a fancy way of saying Ellie's colon doesn't move stool through it, but instead sits there getting harder and harder thus distending the colon. If you really want to know the entire story as to what interventions, diagnostic tests, and whatnot that we have tried, you can search this blog for "<i>constipation</i>" or "<i>cecostomy</i>" or click on the label on the right side bar or if you are feeling extra feisty, google "<i>cecostomy</i>" and this blog pops up.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggTCNjjG1JvK39qKy076QV8vn44X731GRA7DTVy3yoiqhPgqCBDzTuqg1jLuWtCp-4k0bBHyT57FeiV8KXjGfFBYY2kMD_BG4huntkOulormCtRA1jgE0aFUwSPBIrV9foLO26GrXTX_HX/s1600/IMG_6527.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="400" data-original-width="400" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggTCNjjG1JvK39qKy076QV8vn44X731GRA7DTVy3yoiqhPgqCBDzTuqg1jLuWtCp-4k0bBHyT57FeiV8KXjGfFBYY2kMD_BG4huntkOulormCtRA1jgE0aFUwSPBIrV9foLO26GrXTX_HX/s320/IMG_6527.jpeg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cecostomy</td></tr>
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For those of you who are new to the Bear's adventures, Her Royal Stinker Butt had a <a href="https://ellietheurer.blogspot.com/2016/06/where-to-begin-manometry-results-and.html">cecostomy</a> performed surgically back in December of 2016. The purpose of this tube is that it allows for high volume enemas to be given directly into the top of the colon, thus flushing her out. There are many types of enemas, but we were pretty much sticking with saline. In theory, I know isn't everything great in theory? Anyway, in theory, these enemas would keep her colon mostly empty and thus preventing her from getting constipated. For the most part, it worked . . . until July when we were finding ourselves have to near daily enemas via the tube and even some rectal ones with minimal results.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYglf3spblQnUTbEMcjjYAOML7COi54e3G6ydGawcm-EbsAzChPwQ9Pj53o78xwWrWi5s9bsYbyChheF2I8bxykc2B1HX-a1KwH1WvAQ_WNFV4fVcZyMBHOWBydTiIgmxCxVfF_kNf5Mmj/s1600/fullsizeoutput_41d0.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYglf3spblQnUTbEMcjjYAOML7COi54e3G6ydGawcm-EbsAzChPwQ9Pj53o78xwWrWi5s9bsYbyChheF2I8bxykc2B1HX-a1KwH1WvAQ_WNFV4fVcZyMBHOWBydTiIgmxCxVfF_kNf5Mmj/s400/fullsizeoutput_41d0.jpeg" width="300" /></a></td></tr>
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<span style="font-family: Courier New, Courier, monospace;">Medications that cause constipation:</span><br />
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<span style="font-family: inherit;">Do you ever read the side effects of medications? Nearly every single of one of them go like this:</span><br />
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<li><span style="font-family: inherit;">Headache</span></li>
<li><span style="font-family: inherit;">Diarrhea / </span><span style="font-family: inherit;">Constipation</span></li>
<li><span style="font-family: inherit;">Nausea</span></li>
<li><span style="font-family: inherit;">Fatigue /</span><span style="font-family: inherit;">Insomnia</span></li>
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So . . . Ellie Bear lost weight about 18 months ago. Some of it was expected because we took her off of the Risperdal which caused excessive eating and excessive weight gain. What we didn't expect was the amount of weight that she lost - over 7 lb. Then that was it. She just stopped growing for the most part. She was still eating close to 1800 calories/day which is a lot of a child her age with Down syndrome (people with Ds have about 10-20% slower metabolism compared to the general population), but other than growing in height a little less than an inch, she hovers around 46 lb. She is now 10 years-old. She is not on the growth chart for weight while she is 18% for height on a Ds chart.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmJinbwDGxAZAVQXrD853k9piZobdENzjS5Ipp2VhiveI12b_h3Dtz9NX72CQ07wHIqr_n0neAdK0iCbDoTUsRhq2b0NqF-tW2fqLYRwkPKAsLNILFKPZnxWJkABlzq-HE4pPyS1msdQSk/s1600/fullsizeoutput_3d1d.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="786" data-original-width="786" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmJinbwDGxAZAVQXrD853k9piZobdENzjS5Ipp2VhiveI12b_h3Dtz9NX72CQ07wHIqr_n0neAdK0iCbDoTUsRhq2b0NqF-tW2fqLYRwkPKAsLNILFKPZnxWJkABlzq-HE4pPyS1msdQSk/s400/fullsizeoutput_3d1d.jpeg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">First vs. Last day of school last year</td></tr>
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Where am I going with this <b><i><span style="color: #444444;">failure-to-thrive</span></i></b> nonsense? Appetite stimulants! That's right, GI has determined that she is 5-10 lb(!!!) underweight and she is probably a kiddo that just has a high metabolism and thus needs more calories. (<span style="background-color: white; color: #444444;">E has a history of failure to thrive and again, there are several posts on this blog that address the FTT and determine what was the cause</span>). Therefore, we started her on cyproheptadine (Periactin), which is a prescription antihistamine that works as an appetite stimulant (and along a migraine preventative FYI). Again, where am I going with this? One of the top side effects is. . . ding ding ding freaking constipation!!!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPwPxYDR3jYwngMZLqU9-1PYm7X1UQ4lMxk02Mfan4tFB4xpbk6goe2dWbcTWqDFSbxmFujKKqrC81BmXxZ0npDHDuxJGnX4UUuI7ML-FE-O3MTdRYcnCqO4tBI1JyYTgZHszYMW65tiY1/s1600/fullsizeoutput_41de.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1600" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPwPxYDR3jYwngMZLqU9-1PYm7X1UQ4lMxk02Mfan4tFB4xpbk6goe2dWbcTWqDFSbxmFujKKqrC81BmXxZ0npDHDuxJGnX4UUuI7ML-FE-O3MTdRYcnCqO4tBI1JyYTgZHszYMW65tiY1/s400/fullsizeoutput_41de.jpeg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Mismatched shoes are in vogue right now - as per Fashionista Ellie</td></tr>
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<span style="font-family: Courier New, Courier, monospace;">The point of this blog post:</span><br />
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Okay<span style="font-family: inherit;"> y'all. Now that we've </span>establish<span style="font-family: inherit;"> that my </span>daughter<span style="font-family: inherit;"> was no longer </span>excreting<span style="font-family: inherit;"> fecal matter </span>on a<span style="font-family: inherit;"> regular basis thanks to a </span>medication, she ended up in the ER. After 2 months of never getting fully cleared out and then 6 days of nothing at all. Absolutely nothing, I didn't know what else to do from home. Saline, mineral oil, glycerin enemas. Enema through the tube. Rectal enemas. We maxed out on what we could give her without causing phosphorus poisoning. She looked pregnant and her stomach was hard. The gas though. . . this child was tooting like her life depended on it. The house and classroom smelled like cabbage and dead decaying squirrels. Believe it or not, this was a good thing because it means there was no obstruction. <br />
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So there we were hanging out in the ER for fun and the resident walks in. I start to relay what all I have shoved into this kid's colon (which would have been the equivalent of a colonoscopy bowel prep for at least 4 adults) and I am getting the whole skeptical "so this is all rectal?" and "are you sure she hasn't gone to the bathroom with all of that?" Gah! What part of tube in her colon or cecostomy tube were they not getting?! After explaining it all yet again, I finally hear:<br />
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<span style="font-family: "Courier New", Courier, monospace;">"So what is a cecostomy tube?"</span><br />
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Now granted, this was a resident and she was still learning and cecostomies are not common so I went with the: "So a cecostomy is when the appendix is brought to the surface of the abdomen and it is used for high volume enemas to essentially flush out the colon ..... and here are some pictures. . . " For tips on preventing your child from pulling out tubes (i.e. g-tube and/or cecostomy tube), click <a href="https://ellietheurer.blogspot.com/search?q=cecostomy">here</a>.<br />
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An x-ray was ordered to rule out bowel obstruction. Because the x-ray tech was a male, Ellie wanted to show off her awesomeness and be-bops over to the exam table for her x-ray and poses like she is a fashion model. <br />
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Then nothing. I hear nothing! The attending never comes in. The resident doesn't come back in. However, the nurse comes in with another enema which we could have done at home and I ask her for the x-ray results which to summarize involved a large volume of solid stool (no kidding, Sherlock). Let us not forget the 1cm x 1.5 cm foreign body that left me sighing and saying "again?"! Twinkletoes has a history of this - see <a href="https://ellietheurer.blogspot.com/2016/01/gi-situation-foreign-body-failure-to.html">here</a>. Of course, they are all, "she'll poop it out." except my kid wasn't emptying her bowel at all! After painfully pushing out the equivalent of 2 small meatballs, we were discharged without ever seeing the attending or resident. <br />
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The following morning, I informed GI that I would no longer be administering the cyproheptadine to Ellie. The ER visit was August 26th and it wasn't until Sept 9th that things finally became regular. It should be noted that while it appeared that Ellie gained 2 lb while on the appetite stimulant, she has lost those two pounds. I am taking a survey on how many ounces you believe was stool. Also of note, I never did find that foreign body.<br />
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*While this is a Down syndrome related blog, many of the health issues and psychiatric illnesses discussed here are unique to Ellie and not necessarily related to her having Ds.* Please see more information under the Disclaimers tab.Anna Theurerhttp://www.blogger.com/profile/06937391910402532608noreply@blogger.com5tag:blogger.com,1999:blog-1704406957662088168.post-66646770233354159182019-09-22T19:20:00.002-05:002019-09-22T19:20:56.678-05:00A message from The Ellie Bear<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Courier New, Courier, monospace; font-size: large;">Next Month is Down Syndrome Awareness month and I hope to have a special post for y'all. I also seem to have 3 unpublished blog posts that I never got around to finishing. Just a lot of thoughts rolling around in my head and I'm having trouble getting them to paper/computer as well as the usual medical nonsense that Ellie must endure. *notice my husband's face in that last pic? Yep, he wasn't entertained by our antics! *</span></div>
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Anna Theurerhttp://www.blogger.com/profile/06937391910402532608noreply@blogger.com8tag:blogger.com,1999:blog-1704406957662088168.post-13263486516346230052019-09-16T06:31:00.000-05:002019-09-16T06:31:47.217-05:00Happy 10th Birthday, Ellie Bear!<br />
Ten Years ago today. . . .<br />
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<b>Ellie Marie Theurer</b></div>
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6 lb 10 oz</div>
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19.25 inches</div>
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<span style="font-family: "courier new" , "courier" , monospace;">Nickname: Ellie Bear; Chunky Chicken</span></div>
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<span style="font-family: "courier new" , "courier" , monospace;">Favorite past-time: sleeping </span></div>
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<span style="font-family: "courier new" , "courier" , monospace;">Favorite food: formula</span></div>
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<span style="font-family: "courier new" , "courier" , monospace;">Favorite person: Daddy </span></div>
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<span style="font-family: "courier new" , "courier" , monospace;">Favorite Book: Snuggle Puppy by Sandra Boyton</span></div>
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<span style="font-family: "courier new" , "courier" , monospace;">Favorite Song: Personal Penguin (from a book by Sandra Boyton)</span></div>
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<span style="font-family: "courier new" , "courier" , monospace;">Favorite TV show: Criminal Minds. . . wait, that was <i>my</i> favorite show to watch while I was feeding her</span></div>
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Today . . . Age 10</div>
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Ellie Marie Theurer</div>
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<span style="font-family: "courier new" , "courier" , monospace;">Nicknames: Ellie Bear, Princess Twinkletoes, Turkey Bear, Stinker Butt, Miss Sassy-Pants</span></div>
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<span style="font-family: "courier new" , "courier" , monospace;">Grade in school: 4th grade</span></div>
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<span style="font-family: "courier new" , "courier" , monospace;">Favorite food: Nutella</span></div>
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<span style="font-family: "courier new" , "courier" , monospace;">Favorite past-time: playing with Barbies and coloring</span></div>
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<span style="font-family: "courier new" , "courier" , monospace;">Favorite activities: dancing, swimming, and horse back riding</span></div>
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<span style="font-family: "courier new" , "courier" , monospace;">Favorite people (in order of importance): Daddy, Kyla, Baba, Dr. Simon, Dr. Rangwalla, Dr. Rosenbloom, Dr. McQuiston, Mama, Grant, Grace, and Jack</span></div>
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<span style="font-family: "courier new" , "courier" , monospace;">Favorite Books: Pete the Cat books and Brown Bear, Brown Bear What Do You See?</span></div>
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<span style="font-family: "courier new" , "courier" , monospace;">Favorite Song: Don't Cry by Guns N Roses</span></div>
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<span style="font-family: "courier new" , "courier" , monospace;">Favorite TV show: Mickey Mouse</span></div>
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A Few Highlights</div>
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<tr><td class="tr-caption" style="text-align: center;">Irvine Park in California</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Seal Beach, CA</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">CAMP Camp</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Spring Break in St. Louis, MO</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">A rather unfortunate hospital stay</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Attending a Kidz Bop concert</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Braids!</td></tr>
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<a href="https://annasbookshelfbookreviews.blogspot.com/">https://annasbookshelfbookreviews.blogspot.com</a>Anna Theurerhttp://www.blogger.com/profile/06937391910402532608noreply@blogger.com7tag:blogger.com,1999:blog-1704406957662088168.post-9692300883798183032019-08-18T16:36:00.000-05:002019-08-30T16:02:59.303-05:00A metalhead and a thiefIt is time for an Ellie-ism post! The other week I was regaling my therapist with tales of Ellie's shenanigans. As she sat there laughing and I was tearing up from the sheer craziness of it all, I realized that I had my next blog post. Given the crap going on in our lives and the emotional instability that The Bear is currently enduring, I realized that it is time to embrace the humor in these antics.<br />
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<b><span style="color: #444444; font-family: "courier new" , "courier" , monospace; font-size: large;">Definitely not auditioning for The Voice</span></b><br />
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<i>*Don't Cry by Guns N Roses playing in background* along with the sounds of a dying baby seagull.</i><br />
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<span style="font-family: "courier new" , "courier" , monospace;">Drew: What is going on? What is wrong?</span><br />
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<span style="font-family: "courier new" , "courier" , monospace;">Me:*<i>tries hard not to laugh</i>* Ellie fancies herself to be a rockstar.</span><br />
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Do y'all hear that? The sound of a cat being strangled while being submerged in water during a bath? That would be the sound of my daughter "singing". Girlfriend is trying to channel Axl Rose and Robert Plant.<br />
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Ellie has been experiencing some emotional outbursts. These are extreme reactions to things that she cannot seem to pull herself out of. You cannot rationalize with her and as fast as it starts, it suddenly ends. It is devastating to watch and unfortunately a few of these outbursts have resulted in me getting bitten or hit. <br />
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One (or many) such outbursts have recently occurred in the car when the "wrong" song comes on. The screaming, the big crocodile tears, and kicking the back of the car seat occurs when I skip one of her favorite songs. Mind you, I had no idea these were her favorite songs, but this led me to create a 5 song playlist on her iPad in hopes it would get her to chill out. These songs have been on repeat.<br />
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<span style="color: #444444; font-family: "courier new" , "courier" , monospace; font-size: large;"><b>Ellie's Playlist:</b></span><br />
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<span style="font-family: "arial" , "helvetica" , sans-serif;">Lost It All - Black Veil Brides</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">In The End - Black Veil Brides</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">Don't Cry - GNR</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">Love The Way You Hate Me - Like A Storm</span><br />
<span style="font-family: "arial" , "helvetica" , sans-serif;">The Devil Inside - Like A Storm</span><br />
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<iframe allow="encrypted-media" allowtransparency="true" frameborder="0" height="380" src="https://open.spotify.com/embed/playlist/28t6FnUgjk6etLIWpvIF4v" width="300"></iframe>
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hmmm. . . . perhaps it is good that she can't repeat these words nor understand what the artists are singing.<br />
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<span style="font-family: "courier new" , "courier" , monospace; font-size: large;">All in the Name of Fashion</span></div>
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<tr><td><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhO20TvftieVNY8vkmOjWsSw6RgQRGtFFzIvKtf1_LGMp1lWRUMTnTK5e2eyew5gQukmFHslaOVzptE-J6ZamGwaiZplEqR81rrluDNeh2SVbxMxs8zPRj6crLA5Lr_eigWw8_yfM8_X41w/s1600/fullsizeoutput_4095.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhO20TvftieVNY8vkmOjWsSw6RgQRGtFFzIvKtf1_LGMp1lWRUMTnTK5e2eyew5gQukmFHslaOVzptE-J6ZamGwaiZplEqR81rrluDNeh2SVbxMxs8zPRj6crLA5Lr_eigWw8_yfM8_X41w/s640/fullsizeoutput_4095.jpeg" width="480" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 12.800000190734863px;">100 degrees out and she insisted on leg warms on both her legs and arms. </td></tr>
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<span style="color: #444444; font-family: "courier new" , "courier" , monospace; font-size: large;"><b>Princess Sticky Fingers</b></span><br />
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How many of y'all every had a kiddo steal something? Or maybe you lifted something when you were really little? Twinkletoes seems to think the drop in day care [Kidspa] is a borrowing facility. She would be incorrect. It started off with me finding the random block in her lunchbox or backpack. I'd talk to her and then make her bring it back telling her "not yours and that's stealing".<br />
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I started to search her backpack and lunchbox before leaving Kidspa. Then. . . well, let's see if I can type this with a straight face. Actually, let me preface this with Ellie wears leggings and as such doesn't have pockets so she improvises. She is now attempting to walk out of the daycare with items shoved into the waist band of her pants. The first time, we all died laughing. It was so obvious she was trying to pilfer toys. She was trying to loot a broken shovel, sunglasses, and a block. The staff was dying because it was just too funny. I got over being mortified and tried to contain my own laughter. No need to reinforce this behavior. Now I walk into Kidspa and say:<br />
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<span style="font-family: "courier new" , "courier" , monospace;">Ellie, you are going to listen to your friends, keep hands to self, and not steal!</span><br />
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The Stinker Butt isn't heeding my advice. The last time, I even patted down her waistband and she still managed to steal a toy. She comes home, runs to her room, and whips out a magnifying glass!<br />
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<span style="color: #444444; font-family: "courier new" , "courier" , monospace; font-size: large;"><b>The Stink Eye</b></span></div>
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<span style="color: #444444; font-family: "courier new" , "courier" , monospace; font-size: large;"><b>Bear-itude</b></span></div>
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<span style="caret-color: rgb(68, 68, 68); color: #444444; font-family: "courier new" , "courier" , monospace;">This kid is killing me with the yelling "no" while crossing her arms and stomping her foot. She's like a teenager!</span></div>
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<span style="color: #444444; font-family: "courier new" , "courier" , monospace; font-size: large;"><b>Breaking and Entering </b></span><br />
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Ellie Bear seems to be headed down a dangerous path here. The setting: speech therapy waiting room. For speech and OT, there is a big waiting room and then two locked doors that lead to the therapy rooms and gym. As I am talking to the speech pathologist before therapy starts, Ellie reaches into her waistband and whips out her backpack tag (it's like a luggage tag/card). She runs up to the door and tries to "scan" her tag. That pretty much had the entire waiting room in stitches. I guess Turkey Bear was really excited about therapy. Sadly, her backpack tag didn't unlock the door.<br />
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "courier new" , "courier" , monospace; font-size: small;">First day of 4th grade.</span></td></tr>
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<span style="color: #444444; font-family: "courier new" , "courier" , monospace; font-size: large;"><b>The Little Parrot</b></span><br />
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Ellie's speech has exploded over the past few months so she is repeating a lot of words that we say. They are not clear to most people, but for the most part I can understand about 50%. Little Miss hasn't quite grasped the meaning of pronouns in verbal language, but she seems to understand what "not yours" means. If she wants something - i.e. she wishes to ride in she random car in the parking lot, wants a toy, or contemplates taking Andrew's sunglasses, etc - she taps it and tells herself "not yours. . . Daddy's!". (I am always chopped liver). Her newest is if it isn't' something we want her to do (i.e. color the table), she yells:<br />
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<i><span style="font-family: "courier new" , "courier" , monospace;">"Ah ah! No ma'am, not yours!"</span></i><br />
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So parents, if you are wondering if your kids pick up things you do and say - they do! <br />
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There you have it. . . a short list of the most recent Ellie Antics.<br />
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❤️❤️❤️❤️</div>
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Follow Ellie Bellie Bear on Facebook! <a href="https://www.facebook.com/thechroniclesofelliebelliebear/">https://www.facebook.com/thechroniclesofelliebelliebear/</a> Check out Anna's Bookshelf! <a href="https://annasbookshelfbookreviews.blogspot.com/">https://annasbookshelfbookreviews.blogspot.com</a>Anna Theurerhttp://www.blogger.com/profile/06937391910402532608noreply@blogger.com3tag:blogger.com,1999:blog-1704406957662088168.post-61641410467762247392019-08-07T14:55:00.002-05:002019-08-07T14:55:54.829-05:00CAMP Camp - a fun experience for those with disabilities and their siblingsIt has been a wild and crazy summer for us. One full of fun, a bunch of doctors' appointment for me, swimming, and camp. Last year, Ellie attended an overnight camp for children with special needs. To say I was anxious was an understatement. Would she be homesick? Could they handle her medical issues? I need not have worried, because last year, when we went to pick her up - the cheeky little monkey ran up to Andrew and I to say "hi" and then promptly told us "bye bye" while running away. This year, however, I was really looking forward to that week long camp - for both myself (I get a break!) and for Ellie who absolutely loved it last year.<div>
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<a href="https://www.campcamp.org/">Camp CAMP or Children's Association for Maximum Potential</a> is an organization in Center Point, Texas (near San Antonio) that offers various summer and school-year programs for individuals with disabilities ages 5 - 50 years-old and their siblings. </div>
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I honestly cannot say enough good things about this camp. Given Ellie's medical conditions and developmental delays, she is not able to attend traditional camp. Camp CAMP has provided her with an amazing camp experience - a place where she can make friends, ride horses, swim, canoe, cook, dance, play sports, and participate in a wide variety of activities. </div>
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<tr><td class="tr-caption" style="text-align: center;">hmm. . . I think she has something on her face</td></tr>
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Each camp is 1 week long and camp sessions are divided into adults, those with mild intellectual disabilities, medically complex/physical disability/mild ID, and autism. Ellie was in the medically complex group where she was with kids cerebral palsy, muscular dystrophy, seizure disorders and other medical conditions. All of these kids were encouraged to participate in all activities and all activities were adapted for each child. </div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9kj831OgcPx94Vi0yl44wpHFxR7sW0Og1jvkB6Dkz0YA506-xSmbrURvVAJQUd_6ST_EQPHVWiZ65zgtdKSMuMIWY2p7CEypmjc-JpLRElKUHCTYWOe_LjaMoK8H_B5WnvSeT6tH-8ddJ/s1600/IMG_9973.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9kj831OgcPx94Vi0yl44wpHFxR7sW0Og1jvkB6Dkz0YA506-xSmbrURvVAJQUd_6ST_EQPHVWiZ65zgtdKSMuMIWY2p7CEypmjc-JpLRElKUHCTYWOe_LjaMoK8H_B5WnvSeT6tH-8ddJ/s640/IMG_9973.jpeg" width="480" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I was informed that the ferret was her favorite. </td></tr>
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<tr><td class="tr-caption" style="text-align: center;">It was pajama day!</td></tr>
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Medical staff are there to meet all medical needs and administer medications, etc. The staff includes physicians, nurses, respiratory therapists, pharmacists, therapists as well as nursing and pharmacy students. Each camper has at least 1 volunteer assigned to them (some have up to 4 depending on their needs). The volunteer is with them at all times and will sleep in the climate controlled cabin on the bunk above the camper. Ellie really connected with her volunteer and I loved knowing that there was someone there to keep her out of trouble! I believe Ellie's session included 98 campers, 150 volunteers, and 40 medical staff (please do not quote me on this as I am trying to remember exactly what they announced at the closing ceremony). </div>
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<tr><td class="tr-caption" style="text-align: center;">All ready for the dance.<br />I have no explanation for the fork.</td></tr>
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This year, Ellie absolutely loved swimming. Whether she was in the pool, the splash pad, or tubing - she was quite content to be a mermaid. Her favorite part of camp was the dance. She had her hair, nails, and makeup done (and apparently Ellie decided to apply eyeshadow to some of the volunteers) and was decked out in a set of fairy wings. She also acquired a boyfriend. Yikes! She's too young to date!</div>
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<tr><td class="tr-caption" style="text-align: center;">Ellie was in the girls coyote tribe so they tie-dyed their shirts red and decorated them with puffy paint.</td></tr>
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Princess Twinkletoes starts school next Thursday and I think it is perhaps time to get back into a good routine. I am not looking forward to getting up early again . . . not that The Bear was sleeping in much anyway. The summer was busy, but I am happy that she got experience overnight camp. </div>
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Anna Theurerhttp://www.blogger.com/profile/06937391910402532608noreply@blogger.com0tag:blogger.com,1999:blog-1704406957662088168.post-11468307501475253332019-06-13T11:55:00.003-05:002019-06-13T11:55:48.057-05:00Caregiver Woes with the need to live forever and Fun in the SunI am a hot mess over here. I do mean that in the metaphorical and literal sense in that it is hotter than Satan's. . . oh wait. Kid's blog. Just know that it is ridiculously hot and that I could cut the air with a knife given the extreme humidity and I could fry an egg on the hood of my car. Or driveway. We were able to escape the heat last week as we took a family vacation to Seal Beach, California. The weather was beautiful and cool. Ellie enjoyed frolicking in the ocean and we had a great time visiting the Santa Monica Pier and returning to Irvine Park. Last year, <i><a href="http://ellietheurer.blogspot.com/search?q=the+wish+connection">The Wish Connection</a></i> sent our family to California and hosted an event at Irvine Park. I guess Princess Twinkle Toes of the Turkey Bears made quite the impression because the train conductor remembered us! Actually, he remembered Andrew and Ellie and especially the part where Bear stole the microphone from Princess Elsa and started to "sing" on the train.<br />
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<tr><td class="tr-caption" style="text-align: center;">Riding the train at Irvine Park</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">1 year ago at Irvine Park</td></tr>
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One of my greatest fears and greatest desires is quite morbid, but I am going to try to explain the best that I can. My greatest fear is to lose my daughter and yet, my greatest desire is that I outlive her. Now I mean this when she is close to 60 years-old (this is the average life expectancy of a person with Down syndrome in the USA) and I am in my 80s. My greatest fear is that she will out live me and end up not getting the care and love that she needs. That she will end up in some unlicensed care facility where she is neglected both medically and emotionally. That she is all alone. The idea of this happening causes me great anxiety while at the same time, the thought of losing her cripples me. </div>
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The past few months have opened my eyes a bit and have resulted in me having a new goal. Yes, what is it about these goals that I have no control over? Not only do I need to live forever, I need to be healthy - both physically and of sound mind. There are people in my family who have lived to be over 100 so longevity is entirely possible, but there are also those who died "youngish" (80s is young, right?) and had dementia. These past few months have been trying and made me realize that I can try to eat healthy most of the time and work out, but I can still suffer from illness.</div>
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With the exception of my annual physical and a fair number of visits to my sports rehabilitation doctor for my spinal issues a few years back, I have been to the doctor more these past few months than in the past 10 years combined. I had a whole slew of nonspecific symptoms that I ignored for a while as I was chalking most of it up to stress and later my neck issues. Nurses really do make the best patients! </div>
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I was suddenly sleeping 10 hours a night and taking on average, two 2 hour naps a day. I also had malaise which is where I felt blah, just not right, and almost like I was coming down with the flu. I assumed that the fatigue and malaise were initially due to stress. Up until early March, the Bear was having major psychiatric issues, self harming, and multiple doctors' appointments. It was stressful and I had trouble making sure I was taking care of myself. I have a history of having that extreme fatigue where it would last a few weeks a few times of the year. So I ignored it. Only 2 weeks turned into 3+ months.</div>
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During this time, I was having excruciating headaches that would only disapate with laying down. They were odd. It would start on the left side, the back of my head and then travel up along the back side of my left ear while looping around my forehead. I was also having some radiation down my left arm and I had significantly decreased mobility of turning my head to left. I have a history of cervical spine stenosis (where arthritic vertebrae push into the spine cord and surrounding nerves) and I just assumed my steroid injection from 3.5 years ago wore off. So I requested a script for physical therapy and unfortunately that turned into a disaster after just one session. I've had vertigo (the sensation of spinning or dizziness) for a long while now and I just assumed it was orthostatic hypotension which is where your blood pressure drops when you go from sitting to standing too quickly - many people call it a "head rush" only after physical therapy, it changed. I started to have vertigo while sitting, with various head movements bending over, etc. Again, I attributed this to my neck. The fatigue, headaches, and the vertigo led me to no longer working as a substitute school nurse and I was having to depend on Andrew to take off work to drive Ellie to some of her therapies.</div>
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<tr><td class="tr-caption" style="text-align: center;">With the vertigo - I couldn't even watch her on the carousel with nearly falling over and extreme nausea let along ride it with her.</td></tr>
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The thing is, whenever you have a whole bunch of vague symptoms, you tend to think it is one issue. . . not multiple. I got in to see a new sports medicine doctor who told me that the vertigo was not from my neck and to see my PCP for the fatigue. I then started a round of doctor roulette. I've had a ton of blood work to rule out anemia, hypothyroidism, Vitamin B12 deficiency, electrolyte imbalance, Lupus, kidneys issues, etc (that isn't everything but you get the idea) and then a neck and a brain MRI. I finally got a steroid injection into my neck which helped with my head/neck mobility and the pain down my arm but did nothing for my vertigo or headaches. The fatigue and malaise suddenly went away and I don't know if it is related to the fact I had to take high dose steroids before getting IV iodine contrast or if it was just a flare up of something, but I am not complaining!!! I am currently seeing a neurotologist - a neurology ear doctor- who specializes in vertigo. There is still some testing, but it looks like it is related to <a href="https://www.webmd.com/brain/benign-paroxysmal-positional-vertigo#1">BPPV or benign paroxysmal positional vertigo</a>, <a href="https://ihrfoundation.org/hypertension/info/C16">benign/idiopathic intracranial hypertension</a> (hence the headaches, vertigo, ear issues but I am not totally sold on this diagnosis), and possible a temporal bone issue at one part of ear as seen on MRI. Basically, I am a hot mess, BUT things are finally getting better. </div>
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So all of this brings me back to my greatest fear. It is one thing to say I need to live forever so that I can care for Ellie, but what happens if it is me that needs to be looked after? </div>
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Anna Theurerhttp://www.blogger.com/profile/06937391910402532608noreply@blogger.com2tag:blogger.com,1999:blog-1704406957662088168.post-66653623283802161922019-05-27T07:00:00.000-05:002019-05-27T07:00:05.892-05:00Happy Memorial Day!School is out and I officially have a 4th grader on my hands. Can you believe it? I feel like I am not old enough to have a child that is almost 10 years-old, but my white hairs and fine lines say otherwise. <br />
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I've been dealing with some major health issues these past few months which is why I have been neglecting the blog and the The Chronicles' Facebook page. Things seems to be better these past few weeks and I will keep y'all up to date on Princess Twinkletoes' adventures. I am slightly better about adding pics to my IG account so be sure to follow The Bear there: <a href="https://www.instagram.com/atheurer/">https://www.instagram.com/atheurer/</a><br />
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Photos: Andrew Theurer at Elizabeth Milburn Pool<br />
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<br />Anna Theurerhttp://www.blogger.com/profile/06937391910402532608noreply@blogger.com0tag:blogger.com,1999:blog-1704406957662088168.post-73988224973461155292019-04-30T10:44:00.002-05:002019-04-30T10:44:58.768-05:00How to prevent your child from pulling out their g-tube / cecostomy tubeFor those of you who have been following along on this blog for a while, you know that some of my friends and acquaintances have referred to me as the 'poop guru' - yeah, not exactly what I want to be known for! Thanks to Ellie's unique gastrointestinal system, I have learned just about everything there is under the sun to relieve constipation and get a child to defecate regularly. . . except my daughter, that is. Anyway, this blog post comes about because on Friday, I get this call from the Interventional Radiology nurse.<a href="https://www.blogger.com/null"></a><br />
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IR: Anna, remember when <a href="https://ellietheurer.blogspot.com/2017/04/the-missing-cecostomy-tube.html">Ellie pulled out her [cecostomy] tube</a>?<br />
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Me: Unfortunately. I'd like to erase that experience from my memory.<br />
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IR: She hasn't pulled it out lately (*me: Thank goodness!) and I need to know how you what you are doing because we have a child who keeps trying to pull his out.<br />
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Well okay then. Here are a few easy strategies that have barricaded the Bear from deftly removing her indwelling colon tube:<br />
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Check that out! I think that this is the first pic that I have shared where the tube isn't infected and there is no granulation tissue. Gorgeous!</div>
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For all of you The Chronicles newbies - this is a Chait Trapdoor aka cecostomy tube. It is a button/tube goes into the ascending colon and is used to administer very high volume enemas. Twinkletoes here thought it would be fun to only have a bowel movement every 12-22 days even with multiple dietary, lifestyle, and pharmacological help. Puking because you have stool squashing your stomach generally isn't a good thing. That is what happens when your colon has moderate -to -severe delayed colon transit.</div>
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Moving on to what this blog post is actually about! After Ellie pulled the tube out, I tried using those belly bands that you could get off Etsy for kiddos with g-tubes and I tried making them myself. As adorable as they were with their fun cartoon characters and bright patterns, they didn't work for the following 2 reasons:</div>
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1. The belly band would either bunch up with movement or completely ride up on her stomach above the tube. I think that it would have been fine if it was a g-tube, but since the cecostomy is lower on the abdomen, it just wouldn't stay covered.</div>
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2. She could take them off. Mainly because it was fastened with wimpy velcro.</div>
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What I am about to tell you will just blow you away - okay, it most likely won't. I went over to Amazon, my online addiction, and looked at those surgical abdominal binders that people use after pregnancy and gut surgeries. These things are full on elastic and have the industrial strength velcro. The problem was that I bought the generic one-size-fits all and I had to cut it in half width-wise and remove a significant portion of the length. Then the edges would fray. The link below is for the brand that works best for Ellie and has various option sizes. It is latex-free and it is available on Amazon Prime. (heads up: while it is Amazon Prime, it usually takes 1-2 weeks to arrive, but hey, you get free shipping!) Ellie wears the small. She is currently the size of a very skinny 6 year-old child at 44 lbs, but she did wear the same size when she weighed 7 lb heavier [someone explained to me why no one is concerned about her weight loss?! Yes, she lost weight a year ago when she stopped taking Risperdal, but still!].</div>
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<span style="font-size: large;"><a href="https://www.amazon.com/Comfortable-Abdominal-Additional-Pregnancy-Post-Operative/dp/B01GGQ2USG/ref=sr_1_fkmrnull_9?keywords=latex%2Bfree%2Babdominal%2Bbinder%2Btrademark%2Bsupplies&qid=1556637267&s=gateway&sr=8-9-fkmrnull&th=1">Abdominal Binder by Trademark Supplies</a></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiB4FxsANMo2uKHJXIU5hdbbshishB3t6jrNK3NcLc9lparK9KZkkFwLd0RsR0N8bz89NbE43FElT9-evlLf3Se_6p99eUkUoH6m0z5VcwYtF-_NPfQW6M5l3rE2nyUo_8MHW5SQ_nKpW5R/s1600/IMG_6534.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiB4FxsANMo2uKHJXIU5hdbbshishB3t6jrNK3NcLc9lparK9KZkkFwLd0RsR0N8bz89NbE43FElT9-evlLf3Se_6p99eUkUoH6m0z5VcwYtF-_NPfQW6M5l3rE2nyUo_8MHW5SQ_nKpW5R/s640/IMG_6534.jpeg" width="480" /></a></div>
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That would be crayon all over her binder. Once upon a time, I labeled her binders with a sharpie for Camp. She now thinks all of her binders should say "Ellie" so she grabbed crayons and wrote her name all over it. </div>
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Ellie loves the binder and I think it is because it provides a bit of compression - sensory input. </div>
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But what about when my kid is in the bathtub or shower, you ask? Turkey Bear wears a one-piece swimming suit for bathing. Now I know that for all the boys out there, it wouldn't exactly be fashionable, but I will tell you it works!</div>
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There is one more thing that helps detour her from yanking out the tube. Ellie's tube is too big for her and so it is moves around a lot and leaks horribly - gross! Because of this, we keep a piece 4 x 4 non-woven gauze folded into quarters and secured with paper tape over it. (if your kiddo has sensitive skin like Ellie Bear - use <a href="https://www.amazon.com/Critic-Aid-Antifungal-Moisture-Barrier-Ointment/dp/B00NWHHLNW/ref=sr_1_3?keywords=critic+aid+af&qid=1556637567&s=gateway&sr=8-3">Critic-Aid AF </a>around it before covering and stick with paper tape). Notice that I said <i>non-woven</i> gauze. Woven gauze, which is most commonly used in the hospitals, tends to get stuck on the tube and then you are at risk for accidentally pulling it out when you go to remove the gauze. </div>
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<a href="https://www.amazon.com/Medline-Avant-Non-Woven-Non-Sterile-Sponges/dp/B00CSO8FSU/ref=sr_1_6?crid=3HPEDF6TR0XNV&keywords=4x4+non+woven+gauze+pads&qid=1556637677&s=gateway&sprefix=4+x+4+non+woven+%2Caps%2C163&sr=8-6"><span style="font-size: large;">4 x 4 non-woven gauze</span></a></div>
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Look at that horrible bandage job of mine! Did y'all know that I used to be a pediatric ICU nurse? That means wound care was in my job description! No one said it had to be pretty.</div>
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Fingers crossed that some of these tips will help prevent your kiddo from yanking out his/her g-tube or cecostomy tube!</div>
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<br />Anna Theurerhttp://www.blogger.com/profile/06937391910402532608noreply@blogger.com0tag:blogger.com,1999:blog-1704406957662088168.post-51438363426665293352019-04-04T15:05:00.004-05:002019-04-04T15:05:41.595-05:00Organized ChaosWell okay then. . . I'm doing pretty good since it is only 3 weeks since my last blog post! I'm just going to toss out some general updates because we are experiencing our usual organized-disorganized chaos over here. Of course, I am still flying by the seat of my pants and I am pretty sure things shall continue that way until I am 6 feet under . . . or in an urn.<div>
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Psych Update:</div>
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Oh yeah, that's right. . . I talked about Ellie's <a href="https://ellietheurer.blogspot.com/2019/02/self-harm-and-emotional-rollercoaster.html">self-harming behaviors a little ways back</a>. After many sleepless nights, feeling of like a parental failure, and incessant worrying, I would like to report that after adjusting her mood stabilizer, adding in another baby dose of Adderall, and increasing her strattera, I have a totally different kiddo. The emotional crying and sobbing in the morning is now more of a rare occurrence. The agitation with hitting/biting/head banging herself or me in the afternoon has resolved. She is a little less impulsive. All in all, Ellie is the HAPPIEST that I have EVER seen her in her entire 9 years of life. It breaks my heart to know that she had probably been feeling unhappy and out of control for so long. Now it isn't all roses over here. The Bear is still her usual toot. That's just her - Miss Sassypant McToot Turkey Bear - and I wouldn't have her any other way.</div>
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Feeling Brave:</div>
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I had this brilliant idea that once Bear was off the nighttime oxygen, I would take a trip with her to my hometown of St. Louis, Missouri. I kid you not, that day in October when they said we could stop the oxygen, I booked a spring break trip back to St. Louis. Just the two of us. Yep. Ellie Bear and me. As in without Andrew or another adult to help me corral the hyperactive monkey. Up until a few weeks before our trip, I was having mini freak outs, but in the end, she was an angel [ see psych update above] It was great to spend time with my family and I got to see some aunts, uncles, and cousins that I haven't seen in 5 years and that haven't seen Ellie Bear in about 7 years. I have a ton of pics, but I can't share them because I forgot to ask permission. </div>
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Just Going to Have to Hold It:</div>
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Well the Bear is a clever little thing. E is well aware that the scissors are off limits after the one time I came out of the bathroom and discovered that her doll was missing hair and was sporting a gazillion hair bows. I thought that I put the scissors high enough up . . . </div>
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Last week Ellie was watching this YouTube video of a little girl getting her haircut. So we gave her the play-doh scissors . . . obviously that's not good enough because she waited until our respite care provider went to the bathroom to take the real scissors. You know, the sharp ones that actually cut? (cheeky thing dragged a chair over to reach them!) Let's just say it is fortunate Barbie got a lop-sided chop and not Ellie's hair. Needless to say the scissors are in a childproofed locked cabinet. </div>
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Ellie's antics are not only limited to hairstyling. Nope, yesterday it was the paint. Girlfriend was aspiring to be a member of The Blue Man group. Clearly it is not safe for any of us to use the bathroom. <br />
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Dermatological Fun:</div>
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Don't forget your sunscreen, y'all! Even if it is cold, cloudy, you're only riding in the car, etc. I'm in my 30s and just had my first pre-cancerous growth removed from my nose on Monday. I look like I have this nice crater on the side of my noise. It itches like crazy, but I'll take that over cancer.</div>
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Vertigo and Neck Issues:</div>
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Once upon a time I got rear-ended 3 times within a 16 month period. That was the beginning of my lower back issues and my neck issues. About 3.5 years ago, I had decreased mobility of my neck with significant pain radiating down my left arm with numbness in my hand. Two steroid shots into the disc space fixed that. Sadly, the arthritis and cervical spine stenosis will never go away. I think with Ellie's flop and drops, I re-pinched a nerve as I can barely turn my head to the left and I have pain starting on the back of my head radiating along my left ear to the front of my head. I have gotten some sports massages and chiropractic work done which significantly helped my headaches, but physical therapy triggered vertigo. I am pretty much dizzy if I change position too quickly, move my head funny, or stand for too long. Needless to say I stopped physical therapy and went back to my sports rehabilitation doctor. I will be getting an MRI tomorrow so wish me luck!</div>
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<tr><td class="tr-caption" style="text-align: center;">Unable to find photo credit other than Pinterest</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Photo: myhealth.alberta.ca</td></tr>
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Anna Theurerhttp://www.blogger.com/profile/06937391910402532608noreply@blogger.com2tag:blogger.com,1999:blog-1704406957662088168.post-79867386546017702742019-03-12T08:03:00.000-05:002019-03-12T08:30:44.600-05:00Say What?! - Pediatric Hirsutism and Stress!<br>Hi y'all! Can you all feel the stress radiating from me and hear my screams from Texas? Just when my stress and anxiety levels start to taper down, something happens to send them skyrocketing again. Seriously, can this kiddo have anything else? It is like Ellie is the poster child for random, non major (thank goodness!) medical conditions that always leave health care providers stumped. Why?!<div>
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<b>*Please note that aside from Ellie's low thyroid, these medical conditions discussed in this blog are <u style="font-style: italic;">not</u><span style="font-style: italic;"> </span>related to Down syndrome.*</b></div>
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<u>Hirsutism:</u></div>
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Yesterday was Ellie's neuropsychology appointment (more on that in a later post). I brought to the nurse practitioner's attention abnormal hair growth - something that started a few months ago. My thought was that it may be her Trileptal (mood stabilizer/antiseizure medication). Yes, it isn't listed as a side effect, but. . . "it's Ellie". This led to the other neuropsychologist evaluating her and saying it's odd followed by the Comprehensive Care doctor also saying it's odd. All said - "I am not sure what the cause is. This is atypical. Perhaps it is the Trileptal, but that makes no sense. However, this is Ellie".</div>
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Abnormal hair growth or <u>hirsutism</u> is not often seen in kids. For Ellie, she has increased and darkening hair along her arms and legs as well as fine hair, also darkening along her spine. Some people refer to it as lanugo. The Princess refused to cooperate for a picture so check out the one from a Dermatology journal below. Often times, the hirsutism also occurs on the face along upper lip and occasionally the chin and side burn area. Thankfully, we are not seeing that . . . yet. . . hopefully never. The anxiety over facial hair makes me want to puke. I don't want to shave my 9 year-old's face! I don't know if it is transient and will eventually fall out or if it will be permanent. Cue: Mama Bear crying, screaming, and having a heart rate of 180.</div>
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<tr><td class="tr-caption" style="text-align: center;">Photo Credit: Our Dermatology Online Journal</td></tr>
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Hirsutism is most common among woman who have polycystic ovarian disease. Ellie is too young for that and there is no family history. Four, yes, I said FOUR, healthcare providers (including endocrine from a few months ago) and myself have concluded she is not in puberty. Plus, the distribution of hair would be more along the lines of the usual puberty patterns - think legs, underarms, and genital region.</div>
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Other causes include long-term use of steroids such as prednisone and Cushing's Syndrome. All of these increase one's cortisol levels. Cushing's Disease, which can develop suddenly, is rare in children and is often the result of an adrenal gland, which sits above the kidneys, tumor which also causes increased cortisol levels. </div>
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Testing for Cushing's Disease is a pain in the butt and not all that accurate. One test involves analyzing cortisol levels via blood draw in the morning and at midnight. Oh yes, midnight. What lab is open at midnight? A 24 hour urine collection. Yep, you read that right - you are basically going to deliver a gallon of pee to the lab. Also a <span style="font-family: inherit;"><span style="background-color: white; caret-color: rgb(34, 34, 34); color: #222222;">dexamethasone-suppression </span><span style="caret-color: rgb(34, 34, 34); color: #222222;">test, which I don't completely understand.</span></span></div>
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<b>Symptoms include:</b></div>
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-moon face/round face</div>
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-truncal obesity: excess fat along the back, abdomen</div>
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-high blood pressure</div>
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-high blood sugar</div>
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-striae/purple lines </div>
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-hirsutism </div>
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-absent menstrual cycle</div>
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-males: increased breast tissue</div>
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-poor wound healing</div>
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All of us have concluded that Cushing's Disease is very unlikely since her only signs are the hair growth and the high blood pressure. The high blood pressure is also atypical in that it is in her left arm only and she has high renin levels (produced in kidney). Ellie has her follow up with the nephrologist this afternoon so I plan to talk to him about it.</div>
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As it stands, the Comprehensive Care doctor is going to do an extensive literature review as well as consult with endocrine. I for one would Like to have for harmonium levels drawn especially testosterone. </div>
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Not-So-Fun Fact: hair along the spine is is slightly more common in Down syndrome than in the general population, BUT not even close to people Ellie's age.</div>
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I hope to get in a blog post soon on Ellie's strabismus surgery from the end of January as well as a psych update. In other news, I managed to re-pinch a nerve in my neck which is causing left-side neck, head, should, and the upper back of the arm pain. It isn't intolerable, but the headaches and shoulder get pretty bad and I can barely turn my neck to the left. So, hello PT twice a week because I totally have all the time in the world for that. </div>
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Thank you everyone who offered up prayers, good vibes, positive thoughts, etc after my last blog <a href="https://ellietheurer.blogspot.com/2019/02/self-harm-and-emotional-rollercoaster.html">post</a>. I would very much appreciate if you would continue to think of Ellie Bear.</div>
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Anna Theurerhttp://www.blogger.com/profile/06937391910402532608noreply@blogger.com0tag:blogger.com,1999:blog-1704406957662088168.post-24009762160114982532019-03-07T16:04:00.001-06:002019-03-07T16:04:41.643-06:00Ellie Bear Fashion Through the YearsI think it is time for us to do a fun post! I was going through some photos the other day and came across several where Ellie was wearing various outfits as a way of expressing herself. For people who have been following the blog for a while, do you remember the multi-headband stage? <a href="https://www.blogger.com/null"></a><br />
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Her latest, which I do not have a picture of, is wearing a medical mask. I had to explain that one to school. Her bus aide has been wearing a mask as means to prevent catching the flu. Of course, the Bear thinks it is a fashion statement.<br />
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I wish I had a picture of the time where she wore a nightgown, leg warmers on her arms, and fireman rain boots. . . to Top Notch.<br />
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<tr><td class="tr-caption" style="text-align: center;">The year of the Chewy Tubes</td></tr>
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How sassy does she look with her hand on her hip?</div>
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Not pictured - when she pulled leg warmers over my socks</div>
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She went through a hat phase</div>
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<br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><br />Anna Theurerhttp://www.blogger.com/profile/06937391910402532608noreply@blogger.com2tag:blogger.com,1999:blog-1704406957662088168.post-18955287673432932492019-02-22T12:53:00.003-06:002019-02-22T12:55:16.282-06:00Self Harm and Emotional Rollercoaster: Pediatric Psychiatric Illness Things have been quite stressful and chaotic over here to the point where I feel exhausted and really need break. To see my child struggling and not being able to help her is devastating. I am begging you readers for any advice that you can give me - you can respond in the comments section.<br />
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<i><b>I know that mental illness is something that is not often discussed and that there is a major stigma, especially when it comes to mood disorders. I write about these issues so that people can become more aware and so they may feel like they are not the only parents out there caring for a child with mental illness. We all need to support other as it is so easy to feel alone.</b></i></div>
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<tr><td class="tr-caption" style="text-align: center;">She has 8 barrettes and bows in her hair. She is fashionable like that!</td></tr>
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Out of all the random medical issues that Ellie has, the psychiatric stuff is the worst and most stressful. Being developmentally delayed and mostly nonverbal makes it difficult to know what is going on in that head of hers. A while back she was diagnosed with a "mood disorder related to general medical condition", but let's just call it what it really is - bipolar disorder. After an extensive google search for Down syndrome and bipolar, all I found was that there is a significant <i>decreased</i> incidence of mood disorders within the Down syndrome population. Yippee! There is a strong history of bipolar in my family so there was always the chance that she would have an Axis 1 disorder (depression, anxiety, mood d/o). To be truthful, I feel like the <a href="http://ellietheurer.blogspot.com/2018/01/uncontrolled-movements-tics-with-vyvanse.html">significant adverse reaction to Vyvanse</a> turned on the gene and triggered this brain change in her. Add in the fact that both the neurologist and psychiatrist have determined Ellie's case to be "complex" as she has atypical responses to the typical medications used to treat ADHD and bipolar disorder and an odd way of metabolizing medications. I mean, of course she is complex. That is her thing.</div>
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<tr><td class="tr-caption" style="text-align: center;">I think we wore her out</td></tr>
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For the past two weeks, Ellie has been extremely emotional in the mornings. She may wake up crying and trying to lock herself in her room (a bit of humor: the lock on her door is on the outside so that she can't lock herself in. However, she thinks by pushing in the button before shutting the door that we can't get in) or in the bathroom. There doesn't appear to be any trigger.</div>
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After her morning medications of Adderall (ADHD stimulant) and Trileptal (mood stabilizer), her mood is more stable and her ADHD is well under control. She takes a lower dose of Adderall late morning, but I do not believe it is a high enough dose as her hyperactivity and impulse behaviors comes back full force. </div>
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Immediately upon getting off the bus in the afternoon, it is like a switch has flipped. She is extremely hyper, impulsive, oppositional and agitated. For the past few weeks, if I tell her "no" she screams, cries, and kicks me. Occasionally, she shoves my face away and has caused me neck pain from the force. Afternoons and evenings are the worst for her aggression, defiant behaviors, and anger, but then after getting her bedtime dose of Trileptal, she seems to do okay for the bedtime routine.</div>
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On Wednesday evening, I saw something that I have not seen before - self harming behaviors. We were at horse therapy and we told her that she couldn't use a certain horse saddle. She started to scream and cry while using her fists to hit her head and face and then bit her hand. Afterwards, she wanted a strong hug from me while crying. This is not normal behavior for her, even with her psychiatric issues. This scared me because she could have really hurt herself. </div>
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I have been in near daily contact with the neuropsychologist this week and we determined that she is having trouble regulating her moods and emotions (think a mixed state of both mania and depression) and then she is having rebound ADHD after the stimulants wear off. Med changes are tricky. We can only change one medication at a time and I have to do them on a weekend so that I can observe for side effects. We had to change her blood pressure medication so the psych med adjustments had to be delayed. We have discussed a few options and we now have a plan in place. I am hopeful that we will eventually find something that will help her, but I am worried about how long it may take.</div>
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My heart breaks for her and I am asking for prayers, positive vibes, and good thoughts so that we may get through this. I can have my Ellie Bear back.</div>
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<tr><td class="tr-caption" style="text-align: center;">We are hoping that this mini trampoline will help Ellie.</td></tr>
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Anna Theurerhttp://www.blogger.com/profile/06937391910402532608noreply@blogger.com0tag:blogger.com,1999:blog-1704406957662088168.post-72851959465796363322019-01-17T12:15:00.001-06:002019-01-17T12:15:33.060-06:00The Busted Knee, Pediatric Mood Disorder, and a BoyfriendGoodness! Last week's <a href="https://ellietheurer.blogspot.com/2019/01/updates-happy-new-year-insurance.html">blog post</a> was getting <i>w a y </i> too long as that is what happens when I fail to update the blog regularly. . . that and my kiddo seems to have a ton of random stuff that keep popping up. Anyway, I left off where I typed:<br />
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<u style="caret-color: rgb(31, 31, 31); color: #1f1f1f; font-family: Merriweather, Georgia, serif; font-size: 16px;">"BUSTED KNEE WHILE AT THE DOCTOR "</u><br />
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On the first day of winter break, Bear ended up with a busted knee. She was having a follow up neuropsychiatrist appointment when I mentioned that she was peeing copious amounts of urine and frequently. To the extent we put her back into pull-ups and it was soaking through them and her clothes about every hour.<br />
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The question was: UTI vs. Increased Urination secondary to medication?<br />
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Because I am a medical nerd, I researched Adderall XR and urine production. I discovered that up to 5% of people on stimulants get urinary tract infections [UTI], but no mention of increased urination. Consequentially, we tested Ellie for a UTI. This kiddo usually needs to be catheterized for a urine sample. Sadly, she is relatively used to cathing due to her history of urinary retention. Turkey Bear is strong. Very strong. To do a urinary catheterization, I have to hold her upper body while a nurse takes each leg. The third nurse does the actual catheterization. Being in a frog-legged position with pressure being pressed down on her leg while Ellie pushes up is a recipe for disaster. <br />
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<tr><td class="tr-caption" style="text-align: center;">Photo: limoncello.ie</td></tr>
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After the cath, I told her to pull up her pants. She kept falling down and crying. Being the horrible mom that I am, I thought that she was being defiant. I figured the crying was because she was still pissed off. Nope, her left leg was buckling and she couldn't support her weight. I refused to leave the clinic until the PCP assessed her. It didn't seemed fractured, but a knee and bilateral hip X-rays were ordered. She was finally able to stand without too much pain, but still falling. I had to carry her around until the X-ray. Of course, I threw out my back. . . again. After her X-ray, she was going much better in that she was able to walk without pain or falling, but you could see her knee continue to buckled. It was determined that she strained either the supporting ligaments or tendons. She wore an ace bandage for a few days after which she decided it was a stylish fashioned statement and wanted one on each leg. After a week of this, her ace bandage magically disappeared one night.<br />
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<tr><td class="tr-caption" style="text-align: center;">Ellie head banging to Like A Storm's "LTWYHM" aka<br />Love The Way You Hate Me<br />Like A Storm on Spotify: <a href="https://spoti.fi/2ATh0Bl">https://spoti.fi/2ATh0Bl</a></td></tr>
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<u>PSYCHIATRIC CARE</u><br />
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In addition to making her pee, the Adderall XR didn't do anything for her ADHD. She was super hyper, impulsive and not listening to directions. It was so bad that her teacher asked if we stopped her medication. Given the increase urination, the doctor hypothesized that she just didn't absorb the extended release Adderall. We decided to go back to morning Adderall and add in a booster dose.<br />
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This seemed to help. After nearly a year of having poor concentration, Ellie was finally able to sit down and color, paint, and play with play-doh. However, it triggered her mood disorder. She was taking 3 hours to fall asleep most nights and that was with an increase in her sleep meds and she would wake up much earlier than usual. Note: this is <i>not</i> the Adderall. Her midday does is at 10:30am and is out of her system at 1:30pm. Some nights, she would only take an hour (this was her norm). <br />
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Soon, she was extremely energetic and very impulsive, but she could still attend to tasks. She has always been a big repetitive with her speech - "mama! first school. then dance", but it was nonstop. As in as soon as she would finish the sentence, it would start all over. It is sort of like the typical pressured speech you would see in an adult mania. She was also emotional and defiant. We'd tell her no on something and she would just melt down. The neuropsychiatrist witnessed all this and just knew the E couldn't get control of herself.<br />
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For people with mood disorders, it is very common for other psychiatric medications such as stimulants and antidepressants to trigger a mixed state (both mania and depression at once) or a mania. This is why people are placed on mood stabilizers. So earlier this week, we increased her Trileptal dose. I am really hoping that this works for her. It is so trying for us and especially for her.<br />
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<tr><td class="tr-caption" style="text-align: center;">Hanging out with Brandon, the co-owner for <a href="http://noblesandwiches.com/">Noble Sandwich Co</a><br />Formerly Noble Pig featured on Food Network. <br /> We go there every Saturday morning and she will not leave until she<br />gets to talk to him!</td></tr>
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<u>Best Friend/Boyfriend</u><br />
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Before Winter Break, The Bear's class had a winter party which parents were invited to. It was during this party that I discovered Ellie had a best friend. Not to mention that she and S were all lovey dovey. They are the same age and apparently were besties last year. His mom said that S talks about her all the time. This warms my heart to know that Ellie is making friends! Over break, they were both at the same drop-in daycare and apparently they went off to a corner to play. . . um, should I be worried?! What is this canoodling that is going on?! Nonetheless, I always worry about Ellie connecting with other kids because she is predominately nonverbal and also has her impulsive behaviors such as shirt pulling and stealing toys (and putting them away). <br />
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<tr><td class="tr-caption" style="text-align: center;">Pajama Thief!<br /><br /></td></tr>
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Next Friday will be a fun filled day - cecostomy tube replacement, an ABR (fancy hearing screen), and an angiogram of her abdomen (to look at kidneys). Currently, we are attempting to add on eye surgery, but it is complicated as the ophthalmologist doesn't usually have OR time on Fridays. Fingers crossed we can get it all worked out! I believe that this is her 17th or 18th time under anesthesia and I really want to avoid more procedures.<br /><br />Anna Theurerhttp://www.blogger.com/profile/06937391910402532608noreply@blogger.com0tag:blogger.com,1999:blog-1704406957662088168.post-39427215971847625842019-01-10T17:51:00.002-06:002019-01-10T17:51:41.712-06:00Updates: Happy New Year, insurance companies, psych/ADHDI know. I know. I said back in October that I would write about <a href="https://www.morganswonderland.com/">Morgan's Wonderland</a> (an all abilities theme park) in San Antonio and Sea World. It is partially written and then I forgot because life was busy happening. I promise though, I will get the post up hopefully soon.<br />
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I hope that you all had a great holiday and New Year! Earlier in December, my parents came to visit and we had a nice time dining out for family dinners (<a href="https://jackallenskitchen.com/">Jack Allen's Kitchen</a> and the historical <a href="https://www.threadgills.com/">Threadgills</a>), visiting Santa, and decorating the tree. On Christmas Eve, Bear's best friend, Jack, and his siblings came over to bake and decorate cookies. I think that there were cookies buried under the mound of icing and entire bottle of sprinkles. <br />
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My life seems to be full of nothing but doctor's appointments and phone calls to either insurance companies or the CDS company that manages our respite care provider's paycheck. Last week, it was hours of taking politely, but forcefully on the phone with both. In some ways, I am happy to have a degree in health care because I know how to approach things or when something isn't right. On the other hand, none of this is <u>my</u> responsibility. </div>
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<u>MEDICAL PROCEDURES AND INSURANCE ISSUES</u></div>
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Ellie was scheduled to have her <a href="https://ellietheurer.blogspot.com/2017/02/weight-gain-cecostomy-and-constipation.html">cecostomy tube replacement</a>, <a href="https://ellietheurer.blogspot.com/2018/10/hypertension-in-child_15.html">CT angiogram of her abdomen</a>, and an ABR (a fancy hearing test) under sedation on January 4th. I was so proud of myself for getting all 3 coordinated during winter break. Nope! Due to Ellie's <a href="https://ellietheurer.blogspot.com/2018/12/two-viruses-one-bacterial-infection.html">hospitalization</a> last month for RSV, adenovirus, pneumonia, asthma, and a pleural effusion, her procedures all had to be rescheduled. I also had to reschedule her pre-op surgical exam. I am so thankful that the interventional radiology nurse was able to get them all together on the same day. That meant I had to contact GI, ENT, and nephrology to get new orders/authorizations. Again, this should not be my responsibility. </div>
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Of course, things could not go smoothly. Two Fridays ago, I got the letter from her disability Medicaid that the CT scan of her abdomen was <b>denied</b> . It is always on a late Friday afternoon after the offices close <i>and</i> on a holiday weekend. Apparently, she needed to have seen the doctor in the last 60 days and have submitted the reason for test and recent lab results (this sort of seems like common sense to me when ordering something). I wasn't worried about seeing the doctor as we were seeing the nephrologist this past Monday. As for the labs, it was unclear if those too needed to be within 60 days. My concern was having to get them re-drawn. Back in September, the Dell's lab neglected to tell me that the renal bloodwork needed to be sent to an outside lab an oh, they decided to send it to an out-of-network lab! I didn't know this until Cigna sent me a letter about it. The 20% out-of-network coinsurance that I would have been required to pay would have been $1,200!!!!</div>
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Ellie's particular disability Medicaid contracts with EviCare for radiology. The number for questions and appeals on the letter was for EviCare. That person was incompetent and told me that I am supposed to go through the Medicaid. The Medicaid rep who was really nice, said that because it is through EviCare, they have no record of the order or denial. She offered to call them for me. Gah! Fortunately, one phone call from the nephrologist (who, by the way, called the same number as me) spoke with the medical director who turned over the decision.</div>
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<tr><td class="tr-caption" style="text-align: center;">Ellie and Jack</td></tr>
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<u>WHY ISN'T MY CARE PROVIDER GETTING PAID?</u></div>
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I actually have no answer for that. Ellie is approved for respite and PCS services through MDCP. The consumer directed services company that we went with is paid $202.17 through her MDCP budget to manage K's paychecks. After years of things going relatively well, K started getting paid for only some of her hours - 3 missing paychecks in the last 4 pay periods. Sometimes the PCS check was missing while other times it was the respite paycheck. The team members assigned to Bear's case would not return phone calls so I had to speak with a supervisor each time. I would be told that they didn't receive the email for x timesheet. I will tell you that is BS because they were sent in the <i>same</i> email. Then their excuse of must be an attachment issue or a computer glitch. Well, I started to send them together and separately. This last one took the cake because I resent the timesheet 4 times, spoke with a supervisor and emailed him the timesheet who then forwarded it to her two team members. Nothing. K still wasn't paid. I call the team members and left another message followed by calling their direct supervisors. So I left 4 unanswered messages. It finally got worked out, after I threatened to contact Health and Human Services for mismanagement of Medicaid funds. Clearly this was unacceptable so now I am spending time on the phone this week trying to switch over companies.</div>
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<u><a href="https://ellietheurer.blogspot.com/search?q=ADHD&max-results=20&by-date=true">MOOD DISORDER AND ADHD</a></u></div>
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Did you know that stimulants can cause UTIs (urinary tract infections) in about 5% of those who take it? Yeah, me neither. Ellie had been on morning Adderall for about a month and it was working great aside from the whole wearing off after 2.5 hour part! I was so worried about the tics given the debacle 10 months ago, but it never happened. We ended up trying Adderall XR and well, let's just say the school asked me if I stopped her ADHD medications. At this point, she went from being almost completely potty trained to urinating every 45 minutes with complete saturation through her pull-up and clothes. </div>
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While at neuropsych, we tested for an UTI and determined that the increased urination is the result of Adderall XR (of course, increased urination is not a known side effect of Adderall XR) and that it wasn't working because she was peeing it out. She is now on 2 doses of short-acting Adderall a day. It is completely out of her system by 1:00pm so it should not affect her ability to fall asleep . . . yeah, you see where this is going. </div>
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However, she started to have her weird sleep issues of taking either 1 hour (this is her norm) to 3 hours to fall asleep. She'll go 3 or 4 nights of not sleeping to a few nights of good rest. This is even after an increase in her sleep medications. She is now super hyperactive and impulsive. Now we need to determine if it is ADHD for the hyperactivity or has she has she gone into a mixed state over as a result of making stimulant medications.</div>
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You can read more about E's history of ADHD management and her Mood Disorder:</div>
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<a href="https://ellietheurer.blogspot.com/search?q=ADHD&max-results=20&by-date=true">Abnormal reactions to common ADHD medications</a> </div>
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<a href="https://ellietheurer.blogspot.com/search?q=ADHD&max-results=20&by-date=true">DNA testing for psychotropic medications</a></div>
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<a href="http://ellietheurer.blogspot.com/2018/01/uncontrolled-movements-tics-with-vyvanse.html">Uncontrolled movements due to Vyvanse / Adderall XR</a></div>
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<u>BUST KNEE WHILE AT THE DOCTOR </u>- sorry, y'all this post is getting long and I am getting finger cramps so I will write about this and some other fun stuff in my next post!</div>
Anna Theurerhttp://www.blogger.com/profile/06937391910402532608noreply@blogger.com0tag:blogger.com,1999:blog-1704406957662088168.post-27139595481540252692018-12-07T15:30:00.002-06:002018-12-07T15:30:41.536-06:00We are home!Ellie was <i>finally</i> released from the hospital yesterday afternoon after a long 6 night stay. It wasn't until late Wednesday evening that she was able to tolerate being off the oxygen for more than 20 minutes. Well, she must have turned a corner because she didn't need to go back on oxygen since 4:30 pm that afternoon. We busted out yesterday and have been taking it easy since then.<div>
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Her lungs sound clear and her saturations are nearly normal. She has not needed an albuterol treatment at all today. She is in great spirits with lots of playing. Our kitchen is trashed because her entire book library from her room apparently needed to be located next to the kitchen island. So the Bear is definitely feeling better! Her pediatrician cleared her to return to school on Monday and not a moment too since since we have family arriving this week and I still have to finish shopping, wrapping presents, cleaning, etc. </div>
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Anna Theurerhttp://www.blogger.com/profile/06937391910402532608noreply@blogger.com4tag:blogger.com,1999:blog-1704406957662088168.post-51821462172101947892018-12-05T11:00:00.000-06:002018-12-05T11:00:12.479-06:00Two viruses, one bacterial infection, asthma, and a pleural effusionSo. . . we are still here. At this point, I think our resort fees should be waived as we continue to enjoy these lovely accommodations for an extended stay. I want to thank all of you for your prayers, positive thoughts, checking in on us, and offers to help out. It is very much appreciated.<div>
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Ellie Bear was admitted to Dell Children's Medical Center back on Friday night for low oxygen saturations related to an asthma exacerbation caused by RSV and adenovirus (very fancy word for common cold). She continues to improve, but we are having trouble getting her off the oxygen.<div>
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On Monday, Ellie spiked a 102.5 fever. They did <u>not</u> do a chest x-ray, but rather wanted to see if she would repeatedly spike. I was not exactly thrilled by this since it was a new onset high fever. The reason that they wanted to wait was to 1. not unnecessarily exposure her to radiation and 2. her lungs sounded much better and she needed less oxygen. </div>
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Yesterday, her temperature was 101.4 so the doctors did decide to go ahead with a chest x-ray, which revealed left-sided pneumonia and a small pleural effusion (fluid between lining of the lungs). She has been started on antibiotics for the pneumonia, but we will not drain her effusion since it is so small. The effusion should resolve on its own.</div>
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Yesterday and so far today she has been requiring minimal oxygen support, but she continues to fail trials off it. We did have to increase her oxygen last night while asleep, but we were able to wean down twice this morning. However, the entire 5 minute trial off oxygen she dropped from 95% oxygen saturation to 83-85%. Needless to say she is back on oxygen. </div>
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Even with the new pneumonia and the pleural effusion, her lungs continue to sound good. She is on only a little bit of oxygen and she is perkier. Yesterday she sat in the chair for 12 hours and she didn't want to get back into bed at night. That means she is headed in the right direction.</div>
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Anna Theurerhttp://www.blogger.com/profile/06937391910402532608noreply@blogger.com0tag:blogger.com,1999:blog-1704406957662088168.post-17216429197302835312018-12-04T07:27:00.000-06:002018-12-04T07:29:06.986-06:00When can we bust out of jail? . . . er hospitalHello y'all! Can you believe it? TWO blog posts in 1 week, but I wish that the posts were about fun stuff. A few days ago, I mentioned that<a href="https://ellietheurer.blogspot.com/2018/12/in-hospital-asthma-exacerbation.html"> Ellie was in the hospital</a> for adenovirus, RSV, and an asthma exacerbation. She was admitted Friday night and we thought that we might get to go home on Saturday.<br />
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Lies! All lies!<br />
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We are <i>still </i>here. Ellie loves it so much that we decided to stay. On Saturday, we attempted to wean her off the oxygen during the day, but that was a fail after 2.5 hours. Even with oxygen, her O2 sats stay between 88-92%. (normal oxygenation is above 95% and oxygen therapy is typically started if under 88%). Sunday, her lungs sounded much better and she was coughing a lot more (she coughed so hard that she projectile vomited all over me.) True to Ellie fashion, she decided throw in a few more, non-major medical things. Because, why? <br />
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1. Peeing. Why does my kid not pee!? She seems to think that it is appropriate to urinate every 12 hours. The doctors are not a big fan of this, but I told them I am not concerned. The did a bladder scanner on Sunday night and showed she had tons of urine. Just as the nurse gets the order to do a urinary catheterization, Bear pees. Woohoo!<br />
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2. Ellie developed significant abdominal distention and harness. She was not a fan of us even looking at her belly let alone touching it, but she did not cry out. The x-ray revealed extensive gas. Most likely from her rapid breathing and inhaling so much air as well as stool at the lower colon. We were still having constipation at home issues even with the enemas through her cecostomy tube as well as rectal enemas so she hadn't gone in a week. Thankfully, yesterday she had two small BMs after giving a large volume SMOG (saline, mineral oil, and glycerin) enema rectally. Her abdomen is still a little distended and hard, but it is still much better.<br />
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Fever, poor fluid intake, and more oxygen. Early Monday morning, the Turkey Bear thought it would be appropriate to drop her oxygen saturations and require an increase in oxygen twice. We couldn't figure out why because her lungs were even clearer than before and she was coughing (this is good news). We did get her out of bed for a while yesterday, she started to eat more again, and she was in a great mood. She had trouble drinking and we were considering an IV, but we got her to consume small amounts of fluid throughout the day. <br />
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Ellie Bear also developed a fever of 102.5 so the doctor decided that if she continues to spike that high, we will do a chest x-ray to rule out pneumonia. Fortunately, after the Tylenol wore off, she never went above 101.4.<br />
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Now for the good news! Last night (Monday night), we were able to decrease her oxygen a fair amount while sleeping. This is a BIG step in the right direction. She really needs to be able to go all night without oxygen while maintaining her oxygen saturations before 88% before we go home. I a really hopeful that she will be able to go a few hours today, while awake, without her oxygen mask.<br />
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<tr><td class="tr-caption" style="text-align: center;">Thank you, <a href="https://ellietheurer.blogspot.com/2018/06/the-wish-connection-ellies-dream-come.html">The Wish Connection</a> for the visit and balloons!</td></tr>
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The nurses, respiratory therapists, and doctors at Dell Children's Medical Center are great! They value what I have to say. They accept that I know Ellie better than anyone and they understand that I have a fair amount of medical knowledge given my professional history of being a PICU nurse (okay, that was 14 years ago and back when our charts were on paper) and practicing as a pediatric nurse practitioner. <br />
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Andrew had to post-pone his business trip on Sunday due to Ellie's hospitalization, but he has to fly out today and will be back on Friday. Hopefully we will be home by then! He has been visiting and relieving me for coffee breaks and meals as well also bringing snacks, toys, and changes of clothes and toiletries for me. I don't to go home other than after the first day because, but I rather stay near the hospital as it is a 30-40 minute drive for us. I would like to thank everyone who has been praying for us, sending positive thoughts and virtual hugs, brining me coffee, and offering to help. I appreciate it more than you will ever know!Anna Theurerhttp://www.blogger.com/profile/06937391910402532608noreply@blogger.com2tag:blogger.com,1999:blog-1704406957662088168.post-13482886994904082802018-12-02T10:00:00.000-06:002018-12-02T10:00:17.958-06:00In the Hospital: Asthma Exacerbation <br />
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<span style="font-family: ".sfuidisplay"; font-size: 23pt;">On Friday, Ellie was admitted to the hospital due to respiratory issues as she had low oxygen saturations. We were hoping we could go home today (Sunday) but unfortunately we get to stay another night. However, we do think that she will be well enough to go home tomorrow. </span></div>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;">ER Friday Night</span></td></tr>
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<span style="font-family: ".sfuidisplay"; font-size: 23pt;">Last Tuesday night, she was having trouble maintaining appropriate oxygenation levels (typically want O2 sats above 88%) while sleeping even with her albuterol inhaler. I had talk to the on-call doctor and she prescribed steroids. I feel like I should a listen to my mama guy because I really felt like we should’ve gone to the ER but the doctor told us we did not need to even know her oxygenation levels for 85%. </span></div>
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<span style="font-family: ".sfuidisplay"; font-size: 23pt;">She was much better the next day and we had a follow-up with the doctor. She was diagnosed with a viral respiratory infection via nasal swab and her x-ray showed mucous plugging in her right lower lung, but thankfully no pneumonia. </span></div>
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<span style="font-family: ".sfuidisplay"; font-size: 23pt;">She started to do a lot better but Friday night we could keep her above 80 to 85% and she was breathing fast while asleep. When we got to the ER, she was 81% while awake. We did 2 hours of continuous albuterol and then switch to every 3 hours. Needless to say she was admitted and has been on oxygen since then. </span></div>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;">This morning: Still on Oxygen. This position is the best for her lungs and seems to be the most comfortable for her.</span></td></tr>
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<span style="font-family: ".sfuidisplay"; font-size: 23pt;">Her chest x-ray from yesterday showed no pneumonia and she has small little collapsed areas (alveoli) at base of both lungs. She is mainly presenting with an asthma exacerbation related to the RSV and adenovirus. </span><br />
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<span style="font-family: ".sfuidisplay"; font-size: 23pt;">We had expected to come home today but she failed when we tried to lower her oxygen last night. We are hoping that she will feel well enough to move around today and hopefully continue to cough up those mucous plugs. </span></div>
Anna Theurerhttp://www.blogger.com/profile/06937391910402532608noreply@blogger.com2tag:blogger.com,1999:blog-1704406957662088168.post-37808289102160100782018-10-15T06:00:00.000-05:002018-10-15T06:00:08.204-05:00Hypertension In a Child<div class="separator" style="clear: both; text-align: center;">
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In previous blog posts I have written about <a href="https://ellietheurer.blogspot.com/2018/08/surviving-storm-and-speech-explosion.html">Ellie's high blood pressure</a>. I have an update er, well updates.<br />
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According to the new pediatric guidelines, for Ellie's age, height %tile, and gender, her systolic blood pressure [top # of BP] should fall around 111 mmHg. Ellie's average without blood pressure medication is 124 in the LEFT arm only and normal in the right arm.<br />
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High blood pressure in a child is usually due to cardiac issues such as narrowing of the aorta (a large artery that branches off the heart) or renal [kidney] issues. However, with the increasing rates of childhood obesity, doctors are seeing more and more hypertension related to weight, similar to adults.<br />
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<tr><td class="tr-caption" style="text-align: center;">Flashback: October is Down Syndrome Awareness Month</td></tr>
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In August, we were able to rule out all cardiac issues so that is not the cause of her hypertension. We are currently evaluating her kidney function. Many doctors start off with a basic metabolic panel that looks at things such as glucose, sodium, potassium, etc, but the main values that a physician looks at from that lab study is BUN and Creatinine. I won't get into what those things are for, but high levels of BUN and Creatine can be a sign of impaired kidney function. Ellie's were normal. Other, more in-depth testing include assessing Renin, Aldosterone, and Angiotensin - again, I will spare you the details of their function. Ellie's Renin levels are high. Renin is an enzyme that is secreted by the kidney that helps regulate blood pressure. One of the causes of high renin levels is renal artery stenosis, which is is the narrowing of the artery that supplies blood flow to one or both of the kidneys. This is something that is <u>very rare</u> with systolic BP usually above 170 mmHG and it is <i>highly</i> unlikely that Ellie has this . . . BUT, as the nephrologist said "this is Ellie". Plus, she has been on clonidine for years and she is also on a calcium channel blocker BP med so we don't really know how high it would be without these medications. At this point, we are working on scheduling a CT with contrast (angiogram) or her kidneys, but it is not considered urgent.<br />
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<tr><td class="tr-caption" style="text-align: center;">Flashback: October is Down Syndrome Awareness Month</td></tr>
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Hypertension in a child is typically diagnosed when the systolic reading is 10 mmHG above the 95% tile for age, height, and gender. First line treatment for high blood pressure in a child is a calcium channel blocker - i.e. amlodipine. (Calcium Channel blockers tend to end in "ipine.) A few months ago we started Ellie on Norvasc. We some mild improvement in her blood pressure. The nephrologist says that kids typically end up on higher doses than adults due to their higher metabolic rates so he bumped up her dose. <br />
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I don't know what happened and I don't understand it. I measure Ellie's blood pressure with an automated cuff. This is the same cuff that I have been using for months. After we increased her Norvasc, I noticed that her systolic readings were back into the mid-120s. A few weekends ago, I took her BP and it was in the 130s. I waited a few hours and she was 140 mmHg. I didn't believe it. I switched out the cuff to an adult one and took mine. The I compared it to my Qardio cuff that I use with an app. Both of mine were the same. So . . . Ellie's reading was accurate. I waited an hour and she was 147 mm HG. Note that she had both clonidine and the higher dosage of Norvasc in her system. A BP that high in a child is dangerous. I had to call nephrologist on-call who told me to immediately give her clonidine (it is pretty fast acting) and that if it was still in the 140s in a few hours, she'd have to receive IV anti-hypertensives in the hospital. It was odd. I don't know why this happened, but the clonidine did work.<br />
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<tr><td class="tr-caption" style="text-align: center;">Uh huh . . . how long do you think she'll keep that on? The eye patch is over her good eye. The thought is the eye that turns in will correct itself. We've tried glasses and then keeping her good eye dilated with no change (okay, she refused the glasses). So this is our last ditch effort.</td></tr>
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A few days later, the nephrologist upped her dosage of Norvasc again and it seems to be working. Her BP has been averaging 110/60 so we are pretty happy with that. Her renal CT scan with contrast still isn't scheduled as we are trying to do it the same day as her ABR and cecostomy tube replacement. I hate waiting, but I only want to put her under sedation once.<br />
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The blood pressure machine that I use for Ellie is by Contec. It is no longer sold on Amazon, but eBay has it and a few online medical supply sell it. I have tried several automatic and manual cuffs, but this machine is the ONLY one that has a TRUE pediatric BP cuff. Most the ones marketed as pedi are actually infant cuffs. A blood pressure cuff isn't just about length to wrap around the arm. It is about width. It is supposed to cover a specific portion on the upper arm. If the cuff isn't wide enough, the pressure will read higher. If the cuff is too wide, the pressure may read lower.<br />
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<a href="https://www.macgill.com/contec-08a-blood-pressure-monitor.html">Contact 08A Blood Pressure Monitor - pediatric/child cuff sold separately</a></div>
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<tr><td class="tr-caption" style="text-align: center;">photo: uptodate.com</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-QYx7vDs1BhaDYNwIr2_9vhLBYVbdL_1vs8xgKRvYNg4j9n0oONtT82X6M53Q7AkgBYyyvR-WRZGzByxhW7Vgr4usbZQpHSdqC3_aeQhuEx_DZy5yN9LcJbk10E9U-SHjDp71smKT8v55/s1600/table161l.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="176" data-original-width="504" height="222" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-QYx7vDs1BhaDYNwIr2_9vhLBYVbdL_1vs8xgKRvYNg4j9n0oONtT82X6M53Q7AkgBYyyvR-WRZGzByxhW7Vgr4usbZQpHSdqC3_aeQhuEx_DZy5yN9LcJbk10E9U-SHjDp71smKT8v55/s640/table161l.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Some cuffs are labeled with #s. i.e. a child cuff may be labeled as size 9 so it is good to read the measurements.</td></tr>
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While the Norvasc is working, it comes with an unfortunate side effect. For Ellie, it is significantly making her constipation worse (it may cause the opposite problem in some people). She used to get 250 mL of saline enemas through her cecostomy every other day. She is now getting 250 mL SMOG enemas [saline, mineral oil, and glycerin] through her tube 2-3 x week - the max we can do and then 2 rectal ones a week - also the max. It is frustrating because she is still only having a bowel movement every 5-7 days. Seriously?!?! She has a freaking tube in her colon for this stuff! Unfortunately, it is something that Ellie will have to suffer through because I really don't want to her to be at risk for a stroke from a really really really high blood pressure. If it gets to where is going more than a week, then we will have to figure something out because colitis and bowel perforation would suck.</div>
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Anyway, that is the big blood pressure update. My next post on <i>The Chronicles of Ellie Bellie Bear</i> will be fun! Horse therapy with Jack? Yes! Seeing the dolphins at Sea World? Yes! Reuniting with friends from The Wish Connection and seeing a Tim St. John, the magician? Absolutely! What about Morgan's Wonderland, an amusement park designed for children and adults of ALL abilities? What fun!<br />
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Fun Photo Flashback:<br />
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<br />Anna Theurerhttp://www.blogger.com/profile/06937391910402532608noreply@blogger.com4