Monday, September 25, 2017

New Job, Birthday Girl, Thyroid Problems, Weight Gain

For the first time in 8 years, I went back to work.  I’ve been saying since Ellie entered full time kindergarten that I would sign on to work as a substitute school nurse.  However, with all of Ellie’s medical appointments, surgeries, and hospital stays during the past 2 years, I was never able to make the commitment.  Now that Ellie seems to be doing well, I took the plunge.  I can only work Tuesdays, Wednesdays, and Thursdays as that is what works with Ellie’s therapy schedule.  This is new for me.  I worked years ago as a PICU (peds ICU) nurse and then as a nurse practitioner.  School nursing is so different, but I like it so far.  There is a bit of a learning curve, lots of protocols, different school clinics set up differently, and I discovered that kids talk a lot.  Why this is shocking to me, I don’t know.  Maybe because my own 8 year-old doesn’t talk?  Seriously, the stuff that comes out of their mouths! I also was reacquainted with the games “rock, paper, scissors” and “I spy with my little eye”.  



Ellie has been in school for nearly a month.  The first week went well.  Now I am getting notes home from school everyday (along with the unhappy faces) about her being very distracted and unable to focus.  There could be a couple things going on.  One being her ADHD seeing as her medications have not been changed since she gained nearly 9 lbs and dosage is usually based off weight.  The other would be related to her thyroid.  It seems that the Synthroid (artificial thyroid hormone) probably isn’t where it needs to be, but we don’t retest her thyroid levels until October.  Ellie is exhausted.  Every morning I have trouble waking her up and every day when she comes off the bus, she looks so tired.  A tired Bear = cranky Bear.  Mornings, afternoons, evenings, and bedtimes are rough.  Weekends are slightly better because she can sleep in a bit, thus getting her required 13.5 hours of sleep.  One of the things that I have noticed, aside from being a crankypants, is that when she is tired, her ADHD seems worse.  So I wonder, do we need an ADHD medication adjustment or a Synthroid one or maybe even both?



I was going through some pictures of Ellie and came across ones from last year - her school picture and her allergy testing.  Looking at how skeletal she was.  How ill she looked with all of her ribs hanging out.  Then studied the pics from the beginning of this school year.  Nine pounds and 2.5 inches later, she looks so good.  She is still on the small side on the Down syndrome growth chart, but she is finally ON the chart! After a mention of a G-tube for supplemental feeding, if I had know Risperdal for her ADHD would “cure” her failure to thrive, I would have signed on 3 years ago.




Ellie has been taking her speech device with Proloquo 2 Go with her to restaurants and ordering her own food.  She hasn’t quite figured out that if you hold down the “sandwich” button, if gives you the option for “sandwiches”.  Ellie is getting creative:  “ I want sandwich is”.  



Bear turned 8 years-old a little over a week ago.  I cannot believe she is 8 already.  I sometimes feel like I am still in my 20s and can’t possibly believe that I am old enough to have a kid this old.  Other times, I feel like I am pushing 50 with all the white hairs I have been finding (I blame   Bear and my husband).  It was difficult trying to figure out what to get her for her birthday seeing as the only thing she really likes are those large milkshake-size straws.  So yes, she got straws and some winter clothes since she has finally grown.


Well, that is all for now.  Things are even keel and fingers crossed they stay that way!

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Wednesday, August 23, 2017

Organizing Ellie's Medical Care

It has been an eventful past 2 weeks.  Well, not too much so.  We’ve just had 5 doctor appointments.  Most were anticlimatic, such as ENT where we have graduated to yearly appointments.  Can you say “woooohoooo!?  

First up was ophthalmology.  The Bear still isn’t wearing her glasses.  We’ve been doing atropine drops into her good eye to dilate the pupil thus making seeing out of that eye blurry.  In theory,  by having blurred vision in both eyes, she should more likely to wear her glasses.  Except that didn’t happen.  We discussed patching her good eye as we want to force her bad eye to stop turning in.  I gave the doc my “you are delusional” look because can you see Ellie keeping that on?  So we are now doing atropine twice a month which will act similar as patching.  The thing with nystagmus (turning in of the eye), if left untreated, that eye eventually goes blind.  Obviously we do not want that to happen.

If only she would wear them for more than 2 minutes


Next up was GI. We graduated to 6 month follow - ups!  So let’s do another woohooo! Her constipation seems to be well controlled - I hope I didn’t just jinx it!  She is dealing with some random vomiting issues.  Since June, she throws up about 1/3 of the time with the enemas.  We figured this is because we administer a high volume of saline into her colon and it pushes on her stomach.  Except, this is new.  We’ve had 3 other instances where she throws up once randomly - not associated with enemas, eating or drinking.  We are debating on whether or not they were stomach bugs or reflux.  To be on the safe side, we restarted her reflux meds.

As it turns out, we did have to go back to Infectious Disease.  When they called me while on vacation, saying her labs were mostly normal for her, they only had some of her results.  Her B cell lymphocytes were still very low, but she had a moderate immune response to her vaccine.  ID isn’t worried because she has never had sepsis or required IV antibiotics and she did great with the vaccine.  Yes, her lymphocytes are still low, but her immune system is functioning okay.  

Waiting for audiology at ENT


Friday, we had an appointment with our new pediatrician at the Comprehensive Care Clinic.  We had been waiting months to get in.  Dr. B, coincidentally, was Ellie’s very first GI specialist and she has a son with Ds. The appt was nearly 3 hours long and did great until the very end when the phlebotomist used a band-aid instead of purple coban.  One of the goals of CCC is to minimize specialists visits and try to do most “visits” over the phone.  We have our assigned nurse’s cell # and any time we need to talk to a specialist, Dr. B calls them.  She is going to take over most of her care for pulmonary, ID, ENT and possibly neurology.  We are up in the air about urology since Ellie gets bi-yearly renal ultrasounds and CCC doesn’t have that capability in their office.  Her eye issues and GI issues will continued to be predominantly monitored by her specialists.  

Don't you always take baths with your swimsuit?


We learned yesterday that Ellie has hypothyroidism.  It would explain why she has been sleeping 13 hours and asking for naps all summer.  Hypothyroidism is very common in Down syndrome.  It is why we monitor via yearly blood work.  The signs of hypothyroidism in a child are fatigue, weight loss (in adults it is weight gain), constipation, and cognitive impairment.  Because cognitive delay and mild constipation are common in Ds, it is difficult to differentiate between Ds and symptoms of hypothyroidism.  Thankfully, we do not need to add endocrinology to list of docs we see as the CCC will handle it.



According to the pharmacist, synthroid (synthetic thyroid hormone) is supposed to be taken with water only and not within 4 hours of other medications.  Seeing as Ellie takes meds 4 x day, she would have to get up at 2:30am to take the synthroid.  The pharmacist agreed that it isn’t practical so she will take it with her morning medications and routine lab work will monitor her thyroid levels.

Now the good news is that we have NO doctors’ appts for the months of September and November so I will hopefully get to blog about other exciting things besides medical stuff.

She was so excited to ride the bus and go back to school.


Ellie started 2nd grade yesterday and she had a blast!  Here’s to hoping for a good, successful school year!

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Tuesday, August 8, 2017

Immunology and Vacation

We are back!  We had a lovely time in Seal Beach, CA and some nice visits with Andrew's dad and wife.  It had been 5 years since Ellie had seen them and she was just thrilled to see her Papa.  We tried to stay pretty busy and enjoy the gorgeous 80 degree weather which was a good 20 degrees cooler than scorching Austin.

The first day we went to the beach, but we stayed in the way back so she couldn't see in the ocean and want to go swimming.  She also spent time on the playground right on the beach, swinging to her heart's content.



So Disneyland.  It was an adventure and the first time that Ellie and I have ever been to any type of Disney resort.

We made the mistake of waiting in line for 45 minutes to get a disability pass.  A disability pass allows wait to go on a ride without waiting in the line.  For instance, say the wait is 40 minutes, you can go do something else and come back 40 minutes later to get right on the ride.  We did this specifically for Dumbo.  Ellie did not want to ride Dumbo.  Instead she wanted to ride the King Triton Carousel and the Circus Train a gazillion times. The wait times were not too long which was great for someone who has meltdowns, but we learned halfway through our visit that we didn't really need to wait at all or use the disability pass.  Ellie's stroller is actually a wheelchair.  That gives us access to the disability line and allowed us to hop right on the carousel and trains.  Apparently, this is for all the smaller rides.  The bigger ones, you have to have the disability pass.








Unfortunately, Ellie did not get to meet Mickey Mouse.  I am pretty bummed because I think she would have peed her pants with excitement.  She was pretty tired by the time we wanted to go to Mickey Toon Town I saw on the app that the wait was 35 minutes. You cannot use the disability pass or Fast Pass for any of the characters.  Andrew and I knew that there was no way she could wait that long. So yes, we went to Disney for a whopping 2 rides, but I am still glad we went.

Convaid Scout Wheelchair.  Goes up to 100lb.  Ellie's is purple.  Our insurance paid for it because 1. Ellie cannot walk long distances and 2. because she is a runner which is a safety concern.  


The following day, we went to this fancy smancy mall the size of a small town with stores like Dior, Armani, Michael Kors, etc. for the sole purpose of riding their carousel.  Can you tell that Bear loves the carousel?  She went on it 6 times and had a blast.




On our last day, we went to the beach up near the ocean.  That was a colossal mistake.  At first, Ellie Bear was quite content to play in the sand.  Then she realized that she was right by a lot of water and wanted to go swimming.  She didn't understand that, as per Infectious Disease, she could not swim in the ocean due to her cecostomy tube and possible immunodeficiency.  We ended heading back to the hotel room and used their swimming pool.  Ellie's idea of swimming is sitting on the edge and kicking her legs in the water.





A few hours after going to the beach, we get the call from Infectious Disease.  Her labs came back in early.  Great news! Her labs are mostly normal, well normal for Ellie (her CD19 B cell Lymphocytes [a type of white blood cells] are always a bit low).  That means she does not need IV immunogammaglobulin therapy!!!  So. . . she could have swam in the ocean.

On a side note, shortly after entering Disneyland, I managed to throw out my mid-back.  That area of the spine just below the shoulder blades.  It happened while I was transferring Ellie from her wheelchair to the toilet.  I started to get better and threw it out again on the way home due to trying to maneuver Ellie onto the toilet in the airplane bathroom.



The next two weeks are jam packed with doctors' appts - we now only have 4 since ID canceled- and back to school stuff.  Today, we see ophthalmology which should be fun because I have to tell the doc that Ellie still won't wear her glasses even with the atropine drops in her good eye.  Last visit, she said if this doesn't work, we will have to patch the good eye.  Riiiggggghhhhhtttt.  Because this stubborn child is going to leave a patch on.  Thursday is ENT and I am expecting that to be routine.  Yes, a routine appt!!! Next week is GI.  We plan to take her off the Protonix for reflux.  I am not sure that is going to happen seeing as about 30% of the time post enema, she throws up. This is new in the past 1.5 months.  She also had one day where she threw up twice for no obvious reason and then puked all over her iPad while in Seal Beach.  Next Friday is our new patient appt. with the Comprehensive Care Clinic. We have been waiting months for this appointment.  I am told that the office visit will be about 2-3 hours.  It should be fun.  This doctor will become Ellie's new pediatrician seeing as our really awesome, amazing, fabulous current one is no longer in our insurance plan.  Dr. B at the CCC, coincidentally, was Ellie's first GI specialist during the first 2 years of her life.  I am hoping that we can have a few playdates and make it to the neighborhood pool since Bear Bear needs to have some fun in her life..

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Sunday, July 30, 2017

Party On: Updates

Happy Summer!  We have 3 more weeks before school starts.  How about y'all?

We head out to Seal Beach, CA soon!  We have our trip to Disneyland planned and we anticipate seeing Andrew's dad and his wife.  We were going to meet up with a Facebook friend who also has a kiddo with Down syndrome, but that fell through.  It's a real bummer, but I am certain that I will meet her at some point.  After hitting over 100 degrees over the past few weeks, we are thrilled to experience the 70-80 degree weather during our vacation.

So, we found out that Ellie cannot go into the ocean.  Yes, a beach vacation and no ocean!  I talked to Infectious Disease and they said that because she may have an immunodeficiency and she has the cecostomy (which she is considering to be a wound/open skin), she is at risk for severe bacterial infections such as flesh eating bacteria.  Oh goody.  I would like to avoid that. So fun times in keeping her out of the water, but I think, I hope that she will be satisfied with just playing in the sand.  On Monday, we recheck her different WBCs, immunogammaglobulins, and pneumococcal antibodies.  The results will determine if she does indeed have an immunodeficiency.  I am betting that her B cell lymphocytes will just be a little low, which is her normal.  We won't get the results for 2 weeks which is why we are playing it safe.



Speaking of safety, Ellie refuses to wear a medical bracelet.  I have tried various kinds.  I got mySquareID which I put on my keyring.  I also, through Facebook, found these nifty seat belt covers that have a little pocket in the back for medical information.  Stitched on the front, I have "Nonverbal" and "Down syndrome".  The medical info that I have in the back pocket has emergency contacts #s, mediations, allergies, and diagnoses. I have a cover on her car seat, her backpack, and her stroller.  I was able to order these seat belt covers off Etsy.com from Seat Belt 911.



Finally, Ellie has been quite the toot.  She has been exhausted since June and the past few days have been worse.  I am really hoping it is a growth spurt or maybe just the ridiculous Texas heat.  I’m having to wake her up in the morning and that is sometimes after sleeping 14 hours.  She would come home after only 4 hours of summer school and say that she wants to take a nap, which she doesn’t end up doing but does lay on the floor.  She is going to bed early.  The other day, at the drop in daycare, they said she mainly sat there and barely played. The thing is, she does the irritable fatigue thing that little kids tend to do.  She screams and cries in the afternoon.  She’ll calm down for a little bit and then freaks out again around bedtime.  She will ask for juice, bread, Mickey Mouse, bath, etc and then scream “no” when we go to give it to her.  She loses it when we don’t give it to her even though she pitched a fit and said “no”.  This will repeat several times.  I am at my wits end.

Other than that, things have been pretty calm over here and hopefully they will stay that way.  I shall report back after Ellie's ID appointment on 8/16.

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Friday, July 14, 2017

Summer Fun, Pneumonia, Wonky Lab Results

It’s summer!  I hope that everyone is enjoying their break from school.  Ellie has been a cranky butt since school let out.  Every day she signs “school” and “bus”.  She is an emotional wreck.  Happy and smiling one minute while the next she is either crying or shouting  “no”.  I think that it is the lack of routine causing this mood instability or maybe it is the 100 degree heat or the moon is in mercury or something.  I have been trying to keep her busy, but unfortunately, a lot of our plans get canceled. 



Ellie missed most of the last week of school.  She had a junky sounding cough and after a few days, I got the bright idea to check her oxygen saturations using our pulse oximeter.  She was satting at 92% (normal is 97-100%).  That meant a trip to the pediatrician who diagnosed her with pneumonia and sent us on our way with an antibiotic.  The next day her oxygen saturations were in the 80s so this meant an ER visit.  Of course, by the time we arrived at the ER, her sats are back up to 92%.  The doctor said he heard crackles in her lungs which suggests pneumonia.  An X-ray showed mucus plugs in her lungs and an infiltrate.  He said it looked viral, but to continue the antibiotic and prescribe an inhaler which we never ended up using.  Two weeks ago, we saw Ellie’s pulmonologist for her sleep apnea and at night oxygen.  He took a look at her x-ray and said it didn’t look like pneumonia, but rather a viral lower respiratory tract infection such as bronchiolitis and mucus plugs.  He stated it could be a sign that she may develop asthma.  He told us to call if she needed to use her inhaler twice a week for a month.  Right.  I doubt that will happen seeing as she never needed an inhaler before, but I guess there is a first for everything.  When I got access to her clinic note, I see that he diagnosed her with mild asthma. What?  So now we can add another diagnosis to Ellie’s long list of medical issues.



Last week, we had to follow with Infectious Disease because some of her immunology blood work was abnormal.  Her B cell lymphocytes (a type of WBC used to fight infections) were very low.  We don’t know if it is because she recently had an illness or if the low count is the reason she got ill. They always run a little low, which is why we see ID yearly, but this time they were really low, hence why the impromptu office visit. She lost most of her antibodies to pneumococcus so we had to give her the Prevnar vaccine again.  We will recheck all her labs in a month to see if she built up a response.  I guarantee you that her B cell lymphocytes will be back to Ellie’s usually range.

We have been to our neighborhood a few times and she seems to enjoy it.  She will only stay in the splash area.  She seems to be afraid of the pool.  I am not sure why because she knows how to swim a bit - using arms, holding her breathe while under water, and coming up for air.  Still, she enjoys the splash area, which is why we are headed there in a little bit today.



Our school library is open for the summer on Thursday afternoons.  She has been very excited to pick out books and insists on “reading” them on the way home.  Yesterday she picked out a book on cockroaches.  The librarian said it is one of their most popular books.  I bet it is their grossest book!  I am not sure I can stomach reading it as it has really close of pics of those nasty roaches.  Of course, she won’t read them before bed.  Oh no, because I must read “S is for Sofia” every. single. night.  I have the entire book memorized.

We will be headed on vacation this summer to Seal Beach, CA.  It is a part of Orange Country and we will see Andrew’s dad while we are there.  We are going to brave Disneyland for one day as well.  I am excited and dreading it at the same time.  I have never been to any Disney theme park.  I bet it will be hot and crowded and Ellie will get cranky tired.  Nonetheless, I think she is going to freak out when she sees Micky Mouse!  Plus, doesn’t everyone have to experience Disney at least once in their lifetime?



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Monday, May 22, 2017

Just Chilling

If you have been reading this blog for any length of time, you know that when there is a big gap between posts, it is because nothing major is going on.  I am happy to say that things have finally calmed down.  Oh we still have doctor's appointments and therapies, but things are good.

Since Ellie has switched from the FCC classroom from the FAC room, she has been doing well. In fact, the teacher has not seen any challenging behaviors.  We all keep saying "just wait".  I don't know why she has stopped shirt pulling and pushing as she is still doing these things in therapy waiting rooms.  Maybe because she gets more attention as there is another aide in the FCC room?



She is doing so well that she received an Eagle Pride Award at school.  She was pretty excited - mainly because she got a piece of paper.  Andrew and I are very proud of her.  At times, it seems that the whole focus is on her negative behaviors and regression.  It is good to see her rewarded for her good behaviors and accomplishments.



Ellie had a dance recital this weekend.  This is with the 2dance2dream charity.  Studios around Austin offer up studio space for a free dance class for children with disabilities.  The older students are act as volunteers to provide more one-on-one support.  I would love to tell you that Ellie danced.  She did not.  She stood there and allowed the volunteer to stand behind her and move her arms around. Oh she did do a bit of jumping.  She also sat on the stage for half of the dance and attempted to crowd surf twice. This is usually how it goes.  She has two recitals - the studio recital (in this case Evolution Dance) and then the 2dance2dream recital.  For one she will do most the dance and the other she will attempt to run away and throw herself on the ground.



I think in my last post I mentioned that Ellie had high blood pressure.  Last month, we went to nephrology.  Of course her blood pressure was completely normal.  The first normal reading I had seen in a year.  Our 1 month follow up was this week and again it was normal.  Figures.  So Ellie doesn't really have high blood pressure and we can finally cross one specialist off our list of people to see.

Glasses.  Oh the glasses.  It isn't going too well.  I can get her to wear them in 5 minutes increments.  As in she wears them for 5 minutes and then I have to tell her to put them back on.  This will go on for a 1/2 hour and then nothing I say or do will get her to put them back on.  They have the little strap in the back and she can still get them off.  I am not sure what to do.  Just keep putting them on her and hope she gets used to them?


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Tuesday, April 18, 2017

Why I let my 7 year-old carry a blankie

My daughter was given this pale pink lovely as a gift.  Angel Dear lamb.  She loved it.  She actually still loves it.  She never took a pacifier.  She never sucked her thumb. Yet, she latched onto that blankie and chews it.  We have multiple blankies.  All  are the same.  Only Ellie realizes that they are not the blankie.  Her blankie is now pale grey and nasty.  I have 2 other blankies that she has deemed acceptable.  Also grey and well loved.  One is constantly in the wash.

She is 7 years-old and still chews on the the lovey.  She sleeps with it.  She takes it to doctor's appointments and it comes with us to restaurants and outings in her backpack which also holds diapers, wipes, and the iPad.  In public, she has blankie, but she doesn't chew on it.

I was one of those parents who was going to be all "alright, she is 3 years-old, cut the ends off the pacifiers!".  Yet, 7 years later, I still let me child suck on a blanket and take it out in public.  The things is, I. don't. care.

Ellie also has a sleep disorder, she has great difficulty falling back asleep.  She used to wake up sometime  between 12:30-2:30am and not fall back asleep until the following night.  One of the things that soothes her and calms her for sleep is the ratty lovey.  Again, who am I to take it away?  After all, mama needs some sleep too!

I don't really care because there are more important things to get worked up over. Never mind that my daughter is just now developmentally at a 3 year-old level.  My daughter has been under anesthesia 14 or 15 times (yes, I have lost count) for some surgery or medical procedure or other.  She has been hospitalized twice in the last year.  ER visits.  A least one appointment with a specialist visit each month.  We have 3 last month.  If her blankie gives her a bit of comfort, who am I to take it away?

So while my daughter may be 7 years-old and lugging around a blankie, I have decided to focus on other things.  On more important things.


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Tuesday, April 11, 2017

It is always something

I feel like every other week, there is something going on health-wise with Ellie.  Yesterday, we had our follow up with urology.  Ellie was quite naughty.  She has this thing where she throws things off tables and giggles.  She also throws things off exam tables like her iPad, which is now cracked.

We discussed Ellie's urinary issues where she strains to urinate and then may pees in her diaper 20 minutes later.  We also discussed her urinary retention issues.  There are a few options.  None of which I am thrilled about.

Someone will only keep her glasses on in 5 minute increments.

The first option is to put her on the cath program.  Essentially, we would have to catheterize her 3 x day.  This is where you take a catheter (a tube) and insert it through the urethra into the bladder to allow urine to flow out of the tube.  Obviously, this is not a good option for Ellie.  It would take at least 2 people to hold her down while I catheterize her.  Totally not happening.

The second option is a vesicostomy.  This is where you bring the bladder to the surface of the stomach to allow urine to drain.  She would have to wear a diaper to catch the urine and it would mean another surgery.

Fortunately, Ellie's kidneys, while small, are looking okay on ultrasound.  So I decided that we need to go with a wait and see approach.  Ellie will continue to get renal and bladder ultrasounds every 6 months.  If it starts to look like there is kidney damage, we will have to look at those 2 options.  I figure that her kidneys have been looking good for the past 2 years so they should continue to remain healthy.


We also were referred to nephrology (kidney doc).  Like we don't see enough specialists. Over the past several doctors' visits to specialists, Ellie's blood pressure has been high and she is on clonidine which is a blood pressure lowering medication that helps with sleep.  In children, aside from rising childhood obesity, blood pressure issues are related to the kidneys.  Surprisingly, we already have an appointment for next week. I can't believe we don't have to wait months to be seen! I don't anticipate any kidney issues and I imagine they will just monitor her.  Fingers crossed!

I was really hoping for a few months of calmness, but I guess that is too much to ask for.  I am feeling down about all of this.  Ellie always has something going on.  We just cannot catch a break.  Out of all of these health issues, only the sleep apnea is related to her having Down syndrome.  I do not know why she has all of this, but I feel bad for her and I am sick of it all. Fortunately, most of these issues are minor and she is relatively healthy.





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Wednesday, April 5, 2017

The Missing Cecostomy Tube

Oh Ellie Ellie Ellie.  Life is never boring in the Theurer household.  It is always something and that something can usually be traced back to the Bear.

This past Sunday, Ellie decided to remove her cecostomy tube.  She went in her room for one minute and walked out into the kitchen completely naked, minus the tube.  I about died.  This of course necessitated a trip to the ER where they are to insert a Foley catheter (a urinary catheter) into the hole to keep it open.

The thing is, we couldn't find the tube.  I mean she had to have just removed it.  Right?! Maybe.  Did she remove it earlier and we just didn't notice?  We checked her clothes, all the rooms of the house, drawers, the trash can and nothing.  How did it disappear? Also, how she get this tube out without any pain is beyond me.



My parents were visiting so it was mom, dad, Andrew and me all accompanying Ellie to the place of germs.  I discovered a few things: 1. a cecostomy is so rare that the docs had never heard of it; 2. it was up to me to educate them on what a cecostmy is, what the tube looks like, what size catheter to use, and how far to push it through the hole. That being said, they were really good about contacting the radiologist on-call.

It wasn't a bad experience.  For mild "emergencies" you can schedule an appointment.  Yes, an appointment at an ER.  They took us right away.  The doctors saw us right away.  They placed the tube right away.  The X-ray confirmation occurred quickly.  Then we waited another 3 hours.

Sorry for the gross picture.  This is when she had the infection.
Anyway, this is what the tube looks like outside the abdomen.


The normal protocol for when kids pull out their cecostomy tubes (apparently this is relatively common according to interventional radiology [IR] ), you place the catheter and then called IR the following morning to get on the day's OR schedule.  The ER docs decided they wanted her on the schedule before we left the ER.  At first they thought they could do it that day through fluoroscopy.  Then they realized that they were not sure they had the correct size tube.  Then they worked on getting us on to day's surgery for Monday.  They got it all worked out.

Monday, I call IR and request that they double check to make sure they have the cecostomy tube in the correct size.  Apparently, the tubes were under lock and key over the weekend which is why the ER docs couldn't figure it out.  The tubes are always in stock according to IR.

I don't know why she was so excited.


Day surgery went well.  We have decided to keep her tube covered with heavy tape and gauze and to deal with the skin issues that will arise because of bandages.  The IR nurse gave us an abdominal binder to also cover the tube.  I cut it down to size and it goes from her lower ribs to her hips.  Ellie does not seem to mind this.

I am anxious and paranoid.  How are we going to keep this thing in?!  My thought that if it comes out before a year is up, we should just let it close and I talk to GI about the Malone procedure instead. The Malone procedure involves bring the appendix to the belly button and then you catheterized the belly button.  The enemas would go through the catheter.  There is no button, no equipment.  I will be squeamish.

As for where the tube ended up . . . well let's just say Sophie dog had it in her mouth the following morning.  Yuck!




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Wednesday, March 29, 2017

IEP Meeting, Behavior, Vision

When I last left off, I talked about Ellie's regression and the need to move her into a different classroom setting.  I know that it needs to be down.  That it is best for Ellie at this time, but I am just not happy about it if that makes sense.

Last week we had Ellie's IEP meeting, which was completely anticlimactic seeing as I met with Ellie's Functional Academic Class [FAC] teacher twice and her new Functional Communication Class [FCC] teacher.  It was more of a formality - sign the paperwork.  I am really glad that I met with the FCC teacher in advance.  I felt so much better afterwards.  We discussed goals and she showed me in detail how she will teach Ellie and help her to accomplish her goals.  I think that this move will be good for her.



I was, however, not happy the decrease in inclusion time.  In FAC, she would spend 30 minutes with the 1st grade and then specials (art, music, and PE).  In FCC, she loses most of that. She does get reverse inclusions where they bring a typical kid in from the 1st grade to be with her for about 30 minutes. I don't really think that counts, in my opinion. The reason they are taking away inclusion time is because "with her behaviors, she requires too much redirection and is not getting much out of it".  My concern is, how can she learn appropriate social behaviors if she cannot be around and model herself after typical kids?  We did negotiate and decided that she can float into FAC for announcements, lunch, and recess.  With recess, she will remain with the 1st and 2nd grade class, which is good because there are 4 girls that love to play with Ellie.



Rather than wait until the next school to move Ellie to her new classroom, we decided to transfer immediately to the FCC room.  So on Monday she started FCC and I am told that she is doing well.  Minimal behavioral issues.  I think that I just jinxed her!

Two weeks ago we started weekly Applied Behavior Analysis [ABA] therapy in hopes of building up Ellie's social skills and working on her problem behaviors.  She has some 1:1 time with the behavioral therapist and some time to be with other kids.  I have been informed that she does really well at following directions.  Humph!  I wish she did that at home!



At the recommendation of the ABA therapist, we took Ellie for an autism evaluation yesterday at neurology.  We learned that Ellie has bad ADHD.  No kidding!  The doctor said that while she has some autistic-like behaviors, which is common in kids with Down syndrome and developmental delays, she does not have autism.



I recently ordered the book Supporting Positive Behaviors in Children and Teens with Down Syndrome.  I am hoping that maybe I can learns some tips to deal with Ellie's behavior and maybe gain some understanding.  I shall report back after I read the book.



We went for our annual ophthalmology appointment on Monday and learned that Ellie has great difficulty seeing out of her right eye.  It crosses a lot.  So we have the great pleasure of trying to convince Ellie to wear glasses.  I am wondering how much her poor vision has affected her school work?  Is she acting out more, trying to escape work, because she cannot see the learning materials?

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Tuesday, March 21, 2017

World Down Syndrome Day 2017: what to say


I struggle with this post, mainly because I have no idea what to write.  I feel like I have said everything in previous years' posts.  When Ellie was younger, Down syndrome was all I could think about.  All I could worry about.  Today, it isn't in the forefront of my mind.  It is just an after thought of "oh yeah, she has an extra chromosome.  She has Down syndrome".  Ds is sort of in the back of my mind when I think about her developmental delay (mainly lack of speech) and her future as an adult who will want to be as independent as possible, but that is it.  Her non-Ds related health issues and her naughty behaviors are what take up most of my worries.  Down syndrome isn't as scary as I thought it was years ago.  It isn't the end of the world.  It isn't all consuming.  It just is. Ellie is doing everything that a typical kid would do, but at a younger developmental age.  She is progressing (well aside from potty training and social behavior). She is just like any other other kid.  So to all your new parents, do not be afraid.  Your child is a unique being who will bring great job to your lives.  The Down syndrome is just a small, non-scary part of them.  Ds does not define who your child is.





Previous WDSD posts:

World Down Syndrome Day: a celebration 2015

World Down Syndrome Day: Ellie Video 2014

World Down Syndrome Day: an equal opportunity gene 2013

World Down Syndrome Day 3:21 2012

3.21 World Down Syndrome Day 2011





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Monday, February 20, 2017

Regression

Since we pulled Ellie out of school on 12/3 for her surgery preparation, she has regressed in both potty training and in social skills.  She missed most of December due to her surgery and winter break.  I believe that this has contributed to her regression as well as:

Surgical recovery with pain
The wound from the adhesive tape - also pain
The 2nd stage of surgery on 1/20 - more pain
The subsequent infection at her cecostomy site - again, pain

All of these things have affected every aspect of her life and I think her pain and frustration were being taken out on the other kids.



First off, potty training.  We have struggled for years with potty training due to her urinary retention.  Before surgery, I would take her every hour.  She would strain, but pee on the toilet.  She was having around 1 accident a day and we had her in underwear at home and at school.

Anesthesia causes acute urinary retention and because of this, she needed to be catheterized 4 times while in the hospital recovering.  I usually request that the OR nurse cath Ellie before they pull her anesthesia and this usually helps.  It did not this time.

Now, Ellie is having multiple accidents a day.  I still take her every hour.  She strains and pees a little bit, but 20 minutes later, her diaper is saturated.  It is as though she is not completely emptying her bladder.  I am no longer sending her to school in her underwear.  I am wondering if this is still the effect of anesthesia?  If it somehow changed her urinary retention?  We see urology in 3 weeks and I hoping that the doc can give me some insight.



Social Skills:

This is our biggest issues and it is affecting everything.  Her ability to make friends and her ability to learn academically.  We noticed just before her surgery that Ellie was having trouble concentrating.  She was tearing stuff off the walls at school, not sitting, and requiring lots of redirection.  We added a new ADHD medication (the one that caused her to gain 7 lbs in 6 weeks) and it helped once we got the right dosage.  Unfortunately, it did not help with her social behaviors.  For the past 2 years, every once in a while we would have incidents where she would grab other kids' shirts or tackle hug them.  It would seem like there was no trigger.  She would be playing nicely and then suddenly grab.  Obviously this doesn't help build friendships.

Post surgery, it is occurring multiple times a day at school, in the therapy waiting room, at dance, and at restaurants with playscapes.  She is pulling shirts, one time pulled hair, and clearing stuff of other kids' desks.  We believe some of this is her lack of communication.  She cannot say " I want to play with you" or "I like your hair/shirt." We also see it more if it is especially crowded and loud.  Some of it is her trying to get out of work and some may be attention seeking.

Unfortunately, the teacher is recommending that we move her to a different setting next year.  Right now she in FAC, which is the functional academic classroom.  This class focuses more on academic goals and there is more inclusion.  He wants to move her to FCC, which is the functional communication classroom.  The focus is more on communication, has a smaller class size, more aides, and less inclusion.  His hope is that one year in FCC will be enough and she can return to FAC.  I am conflicted and stressed. On one hand, I know that this is probably a good move for her. She can't focus on academics when she is acting out this much. On the other hand, I am wondering, did I fail her or did the school?



We are currently trying to get her into an ABA social skills group, but we are running into several obstacles.  The places either have long waiting lists or require her to be autistic.  One place would only take her if we agreed to 35-40 hours a week.  Like we could afford that.  We have one place that says they have space, but they will not call me to tell me the day and time of the week or when she can start.  I don't understand why it has to be such a battle.

I have requested a functional behavior assessment at school.  After this assessment, we will develop a Behavioral Intervention Plan [BIP].  Right now, we are addressing her behaviors the same way her teachers does so that we are consistent in and outside of school.  I would love to tell you that it is preventing these behaviors, but I would be lying.  I am at the end of my rope and feeling pretty helpless.


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