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.

Thursday, November 15, 2012


Today I sat in an exam room at a doctor's appointment, waiting for the doctor to knock gently on the door and exam my child. I sat there and watched my almost 18 month old daughter walk around the room, getting into anything and everything she could. She tried to take the garbage bag off the trash can, and tried to unplug the computer underneath the desk. She tried to crawl up into the chair and after a little bit of help, she stood up in the chair, and looked out the window at the cars driving by below. 

This may sound like an average run of the mill doctor's appointment to many parents, but to me it was a milestone. A moment I will not likely forget for the rest of my life. 

I was sitting back in THAT room. The room that we first talked to a pediatric neurosurgeon about my yet to be born daughter's brain or lack thereof. I sat in the SAME chair that I had sat in that day, 33 wks pregnant and scared to death. I looked at the same doctor, sitting on the same stool, that had told me we wouldn't know what hydrocephalus meant for our child for some time coming. That he was our GPS navigation system and we were embarking on a journey. A journey filled with unknowns and possible bumps in the road but that it was his job to guide us along the way. That he was like a family relative that you (hopefully) only see at a reunion once a year but that if you need them more often, he'd be there. 

I sat in that same room TODAY and watched my nearly 18 month old daughter walk around the room. It was a surreal, poignant moment. Watching her walk around, playing in the very room that we sat down and discussed her condition not so long ago. That we discussed what chances she had to walk, talk, eat or even breathe. 

After her neurosurgeon walked in, my daughter walked over to the man that had saved her life, not once but twice, and climbed into his lap. This is not her normal behavior.  She doesn't climb into her neurologist's lap, or ophthalmologist or even her pediatrician's. But this man... her neurosurgeon, she remembers

She sat in his lap, playing with his beard and they had a quiet moment. And I sat back and watched. Thankful... that I am back in that room with a healthy, beautiful little girl that amazes me every day. Thankful that I am on this side of the journey and that we know a little more where we are going. Thankful for Dr. George that he has navigated us this far and will continue to do so for years to come. Thankful that I am able to witness a miracle every single day outside of THAT room. Thankful to be the mom of my baby girl.