Wednesday, November 21, 2012

Medical Catch up

November has been a busy one medically speaking! Miss Addison turned 18 months old yesterday!! I can't believe it! She's officially closer to 2 than 1. AHHHH!!! Time is speeding along. We are so blessed that we have a healthy 18 month old little girl walking around getting.into.everything!

Addie had difficulty sucking the extra thick milkshake through the straw, so she just removed the lid and stuck her face in!! 18 months old !

Because Addie is now 18 months old, this means she was due for a bunch of six month follow up from all her one year appointments.

Over the last six weeks ish, Addie has seen her physical rehab doctor (think a PT but with a MD), her ophthalmologist at least three times in the last six weeks, her neurologist for a follow up EEG from her seizure in September, her neurosurgeon and an orthopedic tech. She still has another ophthalmologist appointment, ENT appointment and an 18 month well baby appointment to go.
Getting fitted for her brace

Physical rehab doc that we saw back at the spasticity clinic (post here) in April was very pleased with her progress and thrilled to see her walking around. She did want to get Addie fitted with an SMO brace for just her weaker foot. Her apparent leg length discrepancy seemed to have increased so Addie needs a slight lift on her left leg (1cm) and since we were doing the lift, the doc felt we might as well try to help her not crunch her toes when she walks and stop the slight pronating. So we followed up with an ortho tech, had that fitted and got it in last week. 

We are still working our way up to wearing it for 4-6 hr stretches. We ended up buying her two separate pairs of shoes to wear with the brace because the braced foot is much larger than her unbraced foot. 3 shoe sizes different. So we bought two pairs of knock off crocs and she wears those with her brace. She doesn't have to wear the brace all the time, it's only for when she's walking. So she wears it at home and then when we go out she just wears her regular shoes because she's in her stroller or car seat the majority of the time.  Aunt Missy (thanks Aunt Missy!) bought Addie a pair of wee squeaks to wear when we are out. She had just gotten her TOMS in August and they were 5s. Her wee squeaks are 8s! Holy big foot batman! She gets it honest but man that's a lot of foot growth !!

Exploring Dr. R's office (the eye doc) 
Ophthalmology is still not quite sure what is going on with Addie's eyes. We have a new diagnose of sixth nerve palsy but her NSG isn't quite convinced of that dx. So we are still waiting and seeing. We are still trying to get her to wear her glasses and we have switched from patching with an eye patch (that she just rips off) to chemical patching by dilating her good eye.

Neurology was an adventure! They ordered an EEG to follow up from the seizure in Orlando. It was a slightly sleep deprived (she had to miss her morning nap) one and I got to hold her onto the bed during the 20 mins test. She was not happy. Momma and baby were tired! But we made it through it. I think she's the cutest EEG mummy head ever!

Dr. K came in shortly after and told us the EEG was normal. Normal! PTL! The EEG in Orlando had shown some slowing on the left side  but Dr. K felt it was a result of the seizure, not her normal baseline. Because her EEG was normal, he doesn't want to start her on preventative seizure meds. He said to carry the diastat everywhere, which we do, and that obviously the biggest concern was the length of time the seizure lasted. We don't know if/when it will happen again so we will always have to be prepared. We discussed the possible triggers and he concurs that it was most likely a vacation perfect storm and that we are doing the best thing by keeping her hydrated and rested and being super aware of her schedule and routine now. It's a balance of real life and keeping Addie safe. But so far, so good, thank the Lord! Dr. K doesn't want to see us again... until we need him. Praying we won't need him for a long, long time.

Dr. George's (neurosurgeon) appointment went well. Addie hadn't seen him since May, so a lot of changes and growing for our girl since then. Dr. George was happy to see her and I think she was happy to see him. Her scans looked good, for Addie, and we were sent on our way with instructions for a six month follow up. See here for pictures from her appt with George.  Which I scheduled for 4 days before she turns 2. Which is crazy to think about!

Miss Addie has her six month eval with ECI next week and we are switching her back to PT with ECI instead of with the private clinic we were with. There was an issue with insurance and the way I thought it was going to be billed v. the way it was actually billed so we had to make the switch back. We have enough medical bills we can't avoid... I felt like it was pretty logical to avoid the ones we can avoid. We enjoyed our time at the clinic based PT but honestly it was a bit too much to fit in with her nap schedule. It was also less flexible to reschedule a visit when we had a stomach bug or the PT herself was ill. So I'm happy with our experiment of pulling her into clinic based but am relieved to be going back to ECI.


  1. Goodness, that is a lot of medical busy-ness. I smiled all over again reading about her EEG being clean. I am so happy for you guys for that! And those feet, that is a lot of quick growth and big! Cayman's feet didn't grow much for the longest time. About one shoe size every year. Until she started walking and having more weight bearing on those feet and now those feet experience growth spurts. She's in a size 7 shoe now (at the age of 4 1/2, still tiny even though that seems like a big shoe size for her). :)

    1. It has been a busy few weeks! Looking forward to it slowing down again for a while! The size 8 wee squeaks are as big as wee squeaks go, so we are determined to enjoy the sweet squeak sounds they make while we can. I'll have to post a video of her squeaking around here soon! :)

  2. I want to say that Squeaky Shoes have a larger size than 8. Not positive on that. I always order them through Josephine (Avery's Shoes). Do you know her? In fact I plan to put in an order this week for some Christmas presents because Josephine has a code on her facebook page for Avery's Shoes, 40% off Squeaky Shoes she has in stock! I love a good deal, plus helping their family fund Avery's therapy, it's a double blessing. :)

    1. Awesome! I do know Josephine! I will have to look into that. Thanks :)