Cicily's sentence at school today.  One of her friends wished to catch a ball.  Breaks my heart.  

My Body

Cicily was asked to give a part in the upcoming children's program in our church.  The prompt she was given is: "A blessing I have from Heavenly Father is______".  I read it to her and she immediately wanted to fill in the blank with "body".  I tried to mention other possibilities - Jesus, family, chickens even, but she was emphatic about her body.  To give some perspective, she had spent that same morning coughing up blood because her body caught a virus and is fighting off another case of pneumonia.
However, with the amazing wisdom and perspective she has, Cicily really feels that, 

"A blessing I have from Heavenly Father is my body."

I'm 7 years old!!!!!!!

 My day started off with presents!  (Well first I woke up to a bed full of poop - it's clean out the colon day and boy do I feel much better than yesterday!  Thank you Mom and Dad and Heavenly Father for helping me feel better for my birthday.)  Maya gave me a bunch of play food that I love taking out of the basket.  Sophie gave me a Minnie Mouse playset that I will have fun playing with her (and she will have fun playing without me while I'm working hard at school I'm sure.)  Mom and Dad gave me some polka dot pants and new polka dot stickers for my wheelchair (thanks to our friends the Allens for help on those).  Great presents from my family!

Then I got to go to school.  All my friends were so excited for me to come.  They knew it was my birthday and since we're kinda like family, they were very happy for me.  My class is very special to me.  Mom and Sophie came in the afternoon with cupcakes that I picked out.  My friend Juan played me happy birthday on his communication device and we all laughed!  We ate cupcakes together and read a special birthday book.  Then I showed this picture to my friend Mara and she had a huge smile for me!  It's my CHICKEN CAKE!!!!

 So this was waiting for me in the fridge when I got home!  I couldn't believe it!  I requested a chicken cake, but I didn't expect it to be a real big chicken with a purple polka dot bow!  I couldn't wait to share it with my family and friends at my party.

 Me and my CHICKEN CAKE!!!  Miss Bonnie at Inspired Occasions  did such an amazingly perfect job making my special 7th birthday cake!  If you ever want a cake and you're in our area, I highly recommend you call Bonnie!!  I thank you so much Miss Bonnie.  And a special thank you to Icing Smiles for all the kids and families you serve.  You both made my 7th birthday incredibly special and memorable.  

Tonight we had a PARTY!   I got to show my cake to all my Grandparents, Aunts, Uncles, Cousins, and even my best grown up friends!  I'm so happy you could all come to celebrate with me!!!

 My family

 Oh no not the head!  Do we have to eat this beautiful work of art?!?!?

We also played some party games that were all things I liked.  My family and friends put together words about me (just like I write words at school).  We played pin the polka dot on Cicily's chair (I preferred to hold Mom's hand for this one - it got a little strange :)).  We also played pick up the dumped toys because I love dumping toys lately, had an egg relay that my team won, and did a chicken dance!  

It was a wonderful 7th birthday.  The best part was spending it with all the people I love.

I also should say on Sunday before my birthday my 11 year old friends at church surprised me - they all made cute cards for me and I love looking at them and reading them.  Thanks girls!!  

School Stories - First written sentence

Cicily can read, but doesn't have the fine motor control to write.   To demonstrate that Cicily knows how to put together her own sentence, her teachers put out a bunch of cards with one word on them and Cicily chose one word at a time to form a sentence.  They just started this work today and this is Cicily's very first written sentence.  "Grandma I wish to hug you."  She chose each word carefully and put them in order.  Grandma was "overcome with emotions" when she saw the picture.  :) 

School Stories - a note home

Cicily's teacher always sends a note about what school work and fun things they did for the day.  Cis loves these notes!  After I read them she insists we put them on the table for Dad to see first thing when he gets home too.  As soon as Cis comes off the bus, we sit down and read them and talk about her day (her nurse also calls me each day to tell me more stories).  I so very much appreciate knowing what to talk about with Cicily.  She loves it and beams when I ask her about certain activities.  Today she won her rhyming game and was pretty excited to "tell" me about it. 
Yesterday written on her teacher's note was this:
"She was very happy and was a good helper.  M (a friend in class)'s head kept falling to the side so Cicily put her hand under M's head to help hold it up.  Very cute." 
What love. 

First day of First Grade!

 

 Our beautiful 1st grader off for her very first day of school.  I think she missed school over the summer.  She was SO happy to get back to her same class with her same nurse, teachers and friends! I was comforted to know everyone around her already knows exactly what to do to help and they are all so brilliant with her.   She saw this cute polka dot Minnie Mouse dress at the store and would not let go of it - it had to be hers! 

Her wonderful bus driver said she missed her over the summer.  Notice her polka dot lunch bag.  Her summer nurse Judy gave that to her on her last day.  Cicily loves holding onto it every day on the bus!  Good things come on short busses!

Summer Adventures!

 Laughing her head off doing spins at a Dr. office.  For the last several years this has been Cicily's favorite way to pass the time with Mommy while waiting for doctors!

 Afternoon at a building full of bounce houses.  A great workout for Mom and fun for Cicily.

 A lovely stay in the cool mountains.  Cicily enjoyed taking her pants off this afternoon in the hotel.  She was really cracking herself up!!!

 We got 5 new chickies!!!!!  Cicily's in heaven playing with them of course.  (Our flock of big hens are all gone now.)

CAMP ZOO!  This was Cicily's 4th time at Camp Zoo and she got to bring Maya along this time.  She was thrilled to get to show Maya all the things she loves about Camp Zoo!!  They got to feed this giraffe, hear the orangutan keeper share his funny stories, make a polka dot craft, and see lots of little animals up close and personal.  Loved It!

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.)