The last few months have been crazy for us. All of the time stuck at home between snow storms, freezing cold temperatures and health issues has made us a little shack happy. We've been to Milwaukee for appointments 5 times already since the end of January. This last trip was a girls trip. Madilyn and I brought my 12 year old daughter Shyanne with us so she could experience Children's Hospital and all of the things Madilyn goes through at her appointments.
After 8.5 hours of nonstop running from one appointment to another and all the poking and prodding Shyanne was as tired as us. We started our day with GI which is always great cause our GI doc loves Madilyn and the fact that she's gained so much weight. He is actually a little worried that she's still gaining too fast. Sometimes I feel like we can't win, too slow...too fast...where's the happy medium???
We've been having some issues with the g-tube (direct to her stomach) feeds that end up with vomiting episodes so GI has started her on a new medication that will hopefully help with that. Today was day #1 and we made it through all 3 g feeds with no vomiting or gagging so I am hopeful.
Next up was Endochrine and they monitor her growth really close. Her regular doctor was on vacation so we saw another one and when he saw her he said she needs growth hormones..NOW...I politely explained that she's been through enough and as long as she's proportionate she's fine, we're not injecting her daily just so she can be someone else's version of "normal"...she's been through enough and that is a battle we are choosing not to fight right now or probably ever. After Endochrine we went to the scoliosis clinic for the ortho doctor to see her for the first time. Madilyn had a very "functional shift" to one side due to vision issues for a very long time and with her hypotonia (low tone) they just like to see them to make sure everything is the way it should be and thankfully it is!
We then went to Interventional Radiology and finally got the feeding tube switched from a 12 inch long peg to a cute little glow in the dark button! They had to sedate her for this which was okay because she had a quick brain MRI right after it to check out her new shunt catheter. Both of these appointments went great and the neurosurgeon is very happy with the way her shunt is functioning so the day was a huge success in my book!
We're settling into our normal again after the shunt scare and are looking forward to hopefully staying home until July now. Her emergency shunt surgery eliminated one May appointment and when she had her eyes examined under anesthesia on March 21st the fluid pocket had improved so he is seeing her again in July instead of May. Hooray for an unexpected little break!
Madilyn's busy busy and never stops moving or chattering which is such a blessing for us. She also had her very first round of professional pictures today! I'll be sure to post one or two when we get them back. Pictures are not something we've ever been able to do as Madilyn does not cooperate and definitely runs the show. Thankfully the photographer (my friend Krista) had a ton of patience and it paid off!
Thankfully the snow is melting and we're finally seeing signs of Spring. I can't wait to be able to be outside with Madilyn in her gait trainer and watch her explore and be able to run around with other kids.....especially since we have new little pink tennis shoes...again...we love shoes.....it's all about the shoes!!
