You all should be proud of me as it has only been 3 weeks since my last blog post. Longtime Ellie Bellie Bear readers, do you all remember back in the day when I wrote at least 3 posts a week? Progress! Seriously, everyone, I have 4 or 5 open blog posts sitting in the queue waiting to be completed. Such as the one that I wrote way back in June on lice. I really need to finish that one up because Ellie has lice again back in September!
As usual, things have been chaotic, but I made sure that this past Columbus Day we spent part of the day doing something enjoyable. We had such beautiful weather that Ellie and I spend the day outside and then too a trip to the local nursery to pick out a pumpkin. . . er pumpkins. Bear was the only child there and there were two lovely ladies picking out flowers and 3 landscaping guys as the Red Barn Nursery. They all held little secret smiles as she would go running by (and when she ran up to the landscaping dude and gave him high-5s). My daughter, the entertainment at the local nursery. The frolicking fairy princess.
Ellie Bear thought it was quite the game to gather up pumpkins of various sizes to add them to our cart. The Chunky Chicken was under the mistaken impression that was going bring those 5 or 6 of those personal-sized pumpkins and 12 minute pumpkins. She would dance (yes, dance, frolic, sashay) her way back to the cart with a mini pumpkin in each hand. Perhaps the most entertaining part of the trip was Ellie's vast fixation on gourds. Especially the funky looking green one. She was adamant that we take that one home with us. As well as the one that I think looked kind of like a light tan-colored, bowing goose.
Now, what is the Bear going to be for Halloween? That is a great question because I don't know the answer to that either! Ellie hasn't been into dress up lately. I was thinking Flash dance given her propensity to don leg warmers during dance class. However, I imagine she will saunter about the neighborhood in her glow-in-the-dark Mickey Mouse pajamas like the little diva that she is.
Ellie spends time in both special education classroom [FAC] and general kindergarten. Of course I signed up to be room mom in the kinder class. Several people have asked "are you kidding me?! Don't you know that room mom is a lot of work?". Yes, it is yet it is always a great way to meet people and be involved at the school. (Maybe now isn't the time to also mention that I am the inclusion parent liaison as well). Ellie's school no longer offers Halloween parties. Pumpkin Math does not count, folks. So this past Saturday, all of us room mom's in Ellie's kinder class though it was be fun to host a mini Fall -Festival at a local park with snacks, crafts, and goodie bags and with costumes being optional. All of the children had great fun and it was exciting to hear several of the boys say "Ellie's here! Hi Ellie". Ellie liked her alone time, but she still did well socializing with the other kiddos. Several parents all came up to me to share that their child talks about Ellie at home saying that "she is in the class some of the time, but she is in two classes. I like it better when she is in my class". Andrew and I had the chance to meet many of the parents. To say that her school and her kinder class is welcoming is an understatement. We are thrilled to be a part of this community!
Now for some very quick updates. I promise to write more in-depth posts later, but since I have been asked by a few people for news, here you go:
GI / Urology
For a while the constipation was worse. We were doing a lot of enemas just to get her to go. When I called GI, they recommended lactulose. I imagine you all heard my maniacal laughter at you own homes as this child has been on lactulose in the past (you know that neon green liquid that she has to swallow 1 TABLESPOON twice a day) and it did not work. The telephone call seemed to be the best treatment because she has been uncorked now.
Urology - she was seen 2 days after my post! No real answers. Kidneys are good. Yay! Possibly related to constipation (um, not completely because she has been backed up way worse and was still urinating several times a day) and possibly a disconnect between bladder contraction and urinary sphincter. We watch and wait. If she gets kidney damage, we will look into doing routine, daily catheterizing - please say a prayer that we do not get to that!
Weight - so she has either gained a 1/2 pound or 1.5 lbs. depending on the scale since we started the appetite stimulant in July. Wooohooooo!!!!!! AND she has grown in height as all her pants are too short. First time in over 2 years that I have needed to purchase new clothing for Ellie
Last week we met for the Sleep Apnea Clinic which is a double appointment with an airway ENT and the sleep pulmonologist. It didn't go as planned as the ENT got called away to an emergency. These things happen, but I was practically in tears after we left the clinic. We waited months for the appointment. Her apnea/snoring is worse. And I pulled her out of school for nothing.
Later that night I got a call from the nurse. The ENT reviewed the Cine MRI of her head and neck. She has complete obstruction at the level of the epiglottis. It could be epiglottis insufficiency from laryngomalacia (aka floppy airway) or due to large lingual tonsils (tonsils below the base of the tongue - not the ones you see when you open your mouth) pushing on the glottis. We will do a laryngoscope at the rescheduled visit which is in 1.5 weeks.
Surprise MRI Finding: upon looking at the Cine MRI, it was determined that she has widening at the C1-C2 vertebrae suggesting instability. Aka Atlanta-Axial Instability. About 15% of people with Down syndrome have this, but for only 1-2% of the people, this is an issue. Right now, Ellie is scheduled to get repeat lateral neck X-rays to determine if she does indeed have AAI. It does make me wonder, can the instability cause Ellie's bowel and bladder issues?
Me: I think this also needs to be its own blog post, but it will explain why I have neglected the blog lately. I am still having massive issues with my lower back and sacroiliac. The sciatica is mostly resolved. I did receive a nerve block back in May, but it wore off after only 2 months. The last 4-5 months my neck has been a mess. With lots of pain and signs of arthritis from C3-T1. Certain movements cause pain and/or numbness down my left arm. I have had several shots, chiropractic appointments, therapeutic massages, and visits with my pain and physical rehab doctor. I have also been diagnosed with fibromyalgia. I was in a car accident last month which exacerbated everything. Last week I got a neck X-ray which showed that my clavicle is really messed up where it connects to the breastbone and I am waiting for MRI results of my neck and lower back. Some days are difficult to get out of bed, but I am trying my best to eat well and continue with my PiYo exercises.
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