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. 

School Stories - Lockdown humor

I've gotten to hear this entertaining story from Cicily's nurse and teacher.  Cicily's school had a lockdown drill (where classroom doors are locked and everyone goes to a pre-determined safe "hiding" spot).  So Cicily and her 5 fellow classmates, along with Cicily's nurse, teacher and 4 classroom aides are all locked-down in their classroom bathroom.  Yes this bathroom is large, but not that large when you factor in 6 adults, 6 children and wheelchairs!  So while they are all enjoying their tight space together time, the fire alarm is sounded.  Cicily's teacher says, "plug your ears!" to everyone.  Cicily immediately gets a big smile and yanks off her hearing aids and tosses them!  Apparently she was successful in lightening the mood, which knowing Cicily, is exactly what she was going for. 

Auntie Cis

We were playing a game of "Grandma, Mom, baby" this week.  I was the Grandma, Sophie the Mom and Sophie had a doll baby.  When Cicily got home from school (she LOVES playing in Soph's room lately) we brought her in to play with us.  I said, "hey Auntie Cis do you want to meet your new baby niece?"  And it hit me that she won't get to meet her neices or nephews in this life.  And I wondered at how that would make Sophie and Maya feel.  Will they take their babies to the cemetary to meet their Aunt Cicily?  What will they tell them about her? 
So we've been playing a lot of "Grandma, Mom, baby" and Cicily has enjoyed getting to know Sophie's baby - even if it's just the pretend ones. 

Sophie-tainment

Cicily (and her teacher) invited Sophie to come on a field trip to the state fair.  Both sisters were happy to share the experience of petting all those animals!   (Yes, we almost came home with a bunny.)

Cicily loves to read books with Sophie before Soph's naptime.  And Sophie likes to give Cis a kiss.

Sophie and Cicily were doing makeup this afternoon.  Even while getting poked in the eye with eyeshadow, Cis was laughing her head off at her little sister giving her a makeover.

 

 

We often joke that Sophie was born to make Cicily laugh.  From the day Sophie was born Cicily has given her looks of pride and amusement - almost like a Mom does.  Maya has always made Cis laugh, but there's just something different about Cis and Sophie.  Sophie can get a big belly laugh out of Cis better than anyone else (including Dad- which is an accomplishment!).  Cis takes absolute pride and joy in seeing her baby sister being happy, silly, and learning new things. 

Maya Love

 

 Cicily has had her yearly super-respiratory illness the past couple weeks.  This means she wakes up and coughs and cries for a while many times per night.  Maya has been coming in to wake us up if we don't hear Cis coughing.  "Mom, Dad, Cis really needs a suction."  Then Maya figured out if she holds Cicily's hand or sings her a song after we leave, Cis will happily fall back asleep.   It's true, Maya's a fantastic big sister. 

Cicily enjoyed pushing Maya around in her chair for once! 

School Stories - IEP

Right before Christmas I went to Cicily's school (while she came home to play with Grandma) to have her first Kindergarten IEP.  (An IEP is an educational plan with education and therapy goals.)  I was so excited to meet her new occupational therapist Jessica and A.P.E. coach Jill but a little nervous because I always get emotional at IEPs. 
So we went around the table and Cicily's teacher and therapists all explained what they would like to work on with Cicily for the rest of the year.  I was so impressed with how well everyone knew and understood Cicily. 
Her teacher has been fantastic with Cicily all year!  She did tell me that Cis somehow commands respect from the boys in her class.  I guess they like to pinch each other to mess around, but they never do with Cis!  They'll joke around with her, and her with them and she'll pull on their clothes or chairs, but they don't mess with Cis. 
Her speech therapist described the innovative ways she stabilizes Cicily's body to help her access her speech device. (An Ipad with an app that allows Cis to push a button -such as "book" - and the Ipad speaks, "book".)  And she has learned that Cicily will work hard for a given, set amount of time, but when that time is up - Cis cannot be persuaded to do any more! 
Her occupational therapist said she noticed Cicily wasn't very motivated with standard exercises so she comes up with fun crafts for Cicily to do each week and works on fine motor skills while doing art.  Cicily is always so proud and excited to show these to us when she gets home!
Her physical therapist has gotten Cicily to love using a walker around school.  (She's kind of hated them in the past.)  His secret is they never go "walking" they go on "parade" to the library.  Of course Cis would be motivated by walking to a room full of books! 
They all talked about reading her facial expressions and body language.  They all seemed to really understand Cicily in an impressive way.  I'm continually amazed at how God puts the perfect people into Cicily's life at just the right time.  And no, I didn't cry this year!  (I teared up so many times throughout the day just thinking about it all, I guess I got it all out.)