As we prepared for bedtime, Madelynne found the book that we bought for her that read, "The Night Before Kindergarten" and asked to read it to her sissy. With each page, Annabelle laid in her sister's lap in awe, absorbing all the words on the pages but not asking a single question. We said our prayers together and before we knew it, the lights were off. Both girls were full of butterflies and did get up a few times but were both asleep by 8pm, thank goodness.
I had been working storm duty for the power company for three days and had just gotten home earlier so the night was quite chaotic, trying to pack their backpacks, pick out lunch with limited food because I hadn't been home to grocery shop, and iron their first day of school outfits. As soon as the kids things were lined at the door and we laid down, I fell asleep. Im pretty certain in record timing too..
FIRST DAY OF SCHOOL
6:15am, both girls come running to our bedroom, one after another with a smile from ear to ear. "Today is the day! It's the first day of school!!!!" We had an hour to eat breakfast, get dressed and get out the door. Our nurse showed up with a big smile and said, "Today is my 1st Day of Kindergarten... again!! yay!" :) She and Annabelle were so excited for their big day. Daddy checked the tire pressure on the wheelchair and put a little more air in the tires and I fixed Annabelle's pigtails with matching bows.
Only once that the morning did Annabelle tell me that she was sad she can't ride the bus with her sister and that she has to ride in a wheelchair, but we blew it off and smiled back "Annabelle, I am sorry you can't ride with your sissy, but HOW COOL is it that you get to ride your OWN wheelychair bus?!" Mady chimed in, "yea Annabelle.. im really jealous, you're really lucky." Annabelle smiled in victory and bounced away. The distraction worked.. for now.
The morning began to get hectic when it was time to get to the bus. Madelynne's bus is to arrive at 7:20a at the bus stop down the street, Annabelle's should arrive at 7:33a in front of our house. We headed out the door and made our way to Mady's bus stop.. as soon as she was loaded and I was waiting for the bus to pull away, I noticed Annabelle's bus pulling up!
Daddy had stayed in the driveway with Annabelle so I sprinted down the street (in heels for work, mind you) and tried to take a few pictures of Annabelle before she was loaded up. She sat so confident in her chair and was so proud of herself as the bus got in position for her. You could definitely tell she was a bit apprehensive but she wore a smile that showed otherwise. She was ready for school and nothing was going to stop her now :)
The process for loading her onto the bus takes a couple minutes. They have to unlock the bus doors, check ID and lower the gate for the wheelchair. Once she's finally on the bus, they have to lock and strap her chair down with the transportation brackets we have installed on the chair and then they can finally leave. Unfortunately, we live on a main road in our subdivision so this long process is certainly holding up traffic.. but they'll have to get over it.
I have to say, the best part of having a nurse at the school with Annabelle is that I get a play-by-play on how she's doing all day and pictures of my sweet baby.
Our nurse texted me shortly after arriving at school, "Mom! You forgot to give me my lunch money for coffee!" haha. Both Pat and Annabelle had a wonderful first day of Kindergarten and we are so happy.
SECOND DAY OF SCHOOL
A little different.
The morning was much harder but the excitement was still running. The first day gitters were gone as Annabelle dressed herself for the school day. We talked about her favorite parts of school and she told me she loved everything, but she doesn't like her tubey or wheelchair.. her little heart was hurting and the anxiety of 'being different' was certainly weighing on her. This morning was tough but we are working thru it.
She wouldn't eat all day Tuesday.
The nurse and I texted multiple times thru the day and discussed what could be the problem and the best we could come up with is the difference in schedules. When we're home, Annabelle gets a bolus feed (fast tube feeding with her elemental medical food via gtube) at 9am and 1pm. We usually eat lunch around 1130am so this scheduled has always worked for us. Now that she's in school and they eat lunch much earlier, I think her 9am bolus feed is upsetting her stomach and throwing her appetite off. We're going to adjust our feeding schedule to move the bolus feed up to 8am and afternoon feed to noon. Hopefully this will give Annabelle a little relief and her appetite will improve. It's just an adjustment that we're going to have to work thru to find what fits her best.
MEDICAL UPDATE
We have the results from the EKG and Echocardiogram. Both tests returned normal which is great. Our doctor in Richmond has sent the results to the Neuromuscular Team in Cincinnati for review. As soon as our doctor there puts in the order for the Muscle Biopsy, we will be able to schedule our next surgery. I am getting more and more nervous about timing and scheduling so my fingers are crossed we can finally get a date on the books!
This week has been a whirlwind for our family. So many emotions were rolled into making this week happen and we couldn't be more relieved to watch our dream for our baby unfold. Doctors for years have told us that putting Annabelle in school shouldn't be our priority, that we need to only focus on her quality of life while we have her.. but the more Annabelle defies the odds, the more we believed that her best quality of life WAS going to school with her peers and being a kid just like everyone else her age. She wants to do all the things her sissy and friends are doing, she wants to be included in activities even if that means risking her health - she wants to LIVE life to the fullest and we want the same for her. We work so hard at finding the safest but fair balance between the two. Letting her live a fun life vs keeping her in a safe medical bubble. There is a lot of give and take, where it feels like mommy and daddy are stepping out of our comfort zone a lot to satisfying Annabelle's desires but we are making it happen. If it makes this baby girl smile, than it's worth it. And the smile she's worn this week is worth all the tears of frustration 1000x over!
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