Monday, April 29, 2013

Update - How is Cicily doing?

I'd like to give a little update of how Cicily's doing lately.  I used to take video of her every 3 months, saying "yeah", crawling, signing "Mom", etc. so we could see how her abilities and shakiness changed.  But, now she can't really crawl, so I stopped the videos. 
I'll break it down by problem areas and give a status.  Then of course I'll add what she can still do, since we never want to get too depressing around here!
Crawling/sitting:  She can't really do either.  She doesn't have the core strength to sit very well- she always wants to straighten out, instead of "folding" for a sitting position.  She can't coordinate her efforts well enough to crawl or even push up from laying on her stomach. 
Fine motor: Her hands are frequently clenched now.  Less use of her individual fingers.  But she can still hold onto our finger with all her strength for a good old "finger hug"!
Communicating:  It takes a LOT of wait time when you talk to Cis now.  You really have to wait a good 3-5 seconds for her brain to process what you say and that light to click on in her face that lets you know she's getting you.  She still says a great "yeah" if you give her enough time to get it out after you ask a question.  She still signs the most important things: "chickens, Mom, Dad, Sophie, Maya, Grandma, Grandpa, Michelle and Kelly (nurses), and books!  She also still has her communication device (Ipad) at school and bless her therapist and teachers for continually trying to make it work for her (it's still pretty inaccessible for her). 
Respiratory:  She had a decent winter actually.  She only had one infection that really knocked her out for a long time.  And then of course she was on an antibiotic at least once or twice a month, but did well with them.  She is onto the "silver bullet" antibiotics as her doc calls them - stronger ones than she used to need. 
Digestion: Cicily wasn't tolerating any food from animal sources.  Then in the fall she started having issues with the fruits/vegetables, grains, and beans I was blending for her.  So now we found a formula that is specifically for kids with "impaired G.I. tracts" that she does well on.  I'm sure it's 100% chemicals and 0% real food, but it's keeping her from vomiting like we were seeing in the fall, so we'll take it. 
Bowel movements:  Feel free to skip, but as you know I don't shy away from medical details.  Cicily was having a very hard time getting her muscles to push things out.  After trying Miralax, suppositories, etc., we found magnesium.  We give her 1 teaspoon a day now and it just keeps everything soft enough for her to move it out.  Thank you nurse Michelle and Grandma DeEtte for that glorious tip!!!  No more throwing up because she's backed up!
Circulation:  It's been pretty poor for about 2 years now, getting progressively worse.  Her feet are freezing cold even when her face is sweating.  We have to watch her feet and hands really closely for sores, because they don't heal very well. 
General:  It's getting much more difficult to dress Cis because she's flaily (good medical jargon for ya :)).  We end up getting inadvertently kicked or hit in the gut and face a lot.  It's more difficult to hold her on your lap, since she doesn't like to bend at her waist. 

Are you thoroughly bummed out yet?  Me too, let's talk about the good stuff.  Cicily can still flash her beautiful smile at everyone she meets.  We can still make her laugh and love to do it.  She is an excellent chicken-feeder.  She loves listening to books.  And she still loves interacting with her friends and grownups.  She gets excited for family time.  She can still ask every single day when Daddy is going to get home!  And she still teaches us lessons we couldn't learn any other way. 

School Stories - Mealworms

Cicily's teacher does some very engaging science units for her class.  In the winter they did mealworms that they got to feed and watch progress through their life-cycle.  At the end of the unit, the class had mealworms left over and nothing to do with them.  So, Mrs. Ruiz asked if Cicily would like to bring them home and feed them to the chickens.  Cis was ecstatic about the idea.  Feeding her chickens is a very favorite pastime.  So Cicily carefully brought the mealworms and beetles home and gleefully fed them to her chickens.  She understands the circle of life quite well!
Maya on the other hand, was very sad about the mealworms' fate.  We had a chat about the measure of living things' creations.  It made some sense to her, but she still didn't want to be outside when Cis dumped the mealworms into the chicken coop.