Presley was evaluated by an occupational therapist on her eight month birthday to see exactly where she was developmentally and her results were as follows:
-Gross motor skills- six month level.
The therapist said there were a few things she was doing that were at her age range but because she wasn't twisting at her trunk to retrieve toys (which she now does) she fell into the six month category.
-Fine motor skills- seven month level
I was happy with those results
-Expressive and receptive language- Three month level
I knew these results would be the lowest since at the time she wasn't babbling or smiling at all but three months seemed really low. The therapist said that because she didn't respond to us by smiling she couldn't put her any higher than a three month level(she now smiles all the time). I wasn't to bummed by the results though because like I said I knew she would score low in this area.
I don't want to sound like a mother in denial but I know those results are already outdated. I know she is delayed in all categories but she has made tremendous progress in the last month so I'm not taking those results to heart to much right now. Looking on the bright side though her low results qualified us to receive early intervention services up until her third birthday so we're excited about that.
I met with her case manager and together we set up her individual service plan (ISP). Her plan will include a child development specialist coming to our house once a week to work/play with her and this person will also give us exercises to do with her to help her development. Presley will be evaluated by a physical therapist and if they feel she needs it they will also come to our house on a weekly basis. Because Presley's seizure meds have a possible side effect of vision loss we are also being set up with someone from the Blind Babies Foundation (horrible name I know) who will evaluate her from time to time. We will also start going to a weekly baby group at the early learning institute (ELI) which is taught by the occupational and physical therapist. The group will be a nice way to start getting her some social interaction. We will meet with this team every six months for a progress report to see how she's doing and to set new goals for her. Presley is set up on this plan until her third birthday but she can graduate early if the services are no longer needed. I'm so thankful to have all of these services for her, everyone I've talked to stresses how important early intervention is so we're anxious to get started in the next few weeks.
We also decided to enroll presley in a research study at UCSF where researchers will study the genetics associated with epilepsy and of course try to figure out new ways to treat this horrible condition. Mark, Peyton and I will also need to participate to see if there is any genetic connection they can find within our family. The study just involves all of us giving a blood sample so it's something I will gladly do in hopes they can learn any new information from our situation.
Our next EEG appointment is March 4th and of course we're hoping it comes back normal. I'm looking forward to talking to the neurologist about where we go from here. How long will Presley stay on her current medication, what additional testing will be done and what her plan is for future medical care.
For now I'm just so thankful my baby is doing so well. I actually went to church for the first time in 15+ years a few weeks ago. I don't consider myself to be very religious but when the top pediatric neurologist in the area (maybe even the country) tells me she is 99.9% sure my daughter has TS and that this would be the first case she had ever heard of or seen where a baby has white birth marks and IS but not TS, I have to believe there is a higher power involved here. Everyone there has been so warm and welcoming to me and bottom line is I leave there feeling positive and thankful. Mark isn't into it but that's ok, we both have to deal with this in our own way and for me it feels good to go and I plan on having both Peyton and Presley baptised next month.
In my heart of hearts I just feel like she is going to be ok. Even if we get more bad news along the way I still know she will be ok. I haven't been in that dark "why us" place in quite a while and it feels nice. I'm so looking forward to getting out of this house and on with our lives in a few weeks when Presley is finally weaned off of Predinosolone. Mark and I were realizing we've only taken her out in public a handful of times. Before she was officially diagnosed she was just a super fussy baby so even going on a family costco run was filled with anxiety about how to handle our screaming child so we usually avoided things like that. We are just excited about doing the little things together again. I'm pretty sure I'll be much more excited than the average mother to be out running errands with my baby again!
have to end this post with some pics of my baby girl finally starting to smile for us again!!!
I start to tear up every time I read your heart felt posts about how thing are going with you all. While I'm not much of a church goer either, I fully agree that there is a higher power watching over Presley and the rest of you. My mom always taught me about the power of positive thinking (and gave me two copies of the book!), so I am a firm believer that positivity can do great things. Yours and Mark's strength is helping your little one so much, and your unflappable silver lining will continue to spur great things for Ms. Presley. You are such a fantastic mom; we should all strive to be as loving and positive as you have been. I know that it has not always been easy to keep that positive outlook, we all have our moments of doubt and despair, but with everything you guys have been dealt, I am in awe of how well you are doing and how great both of your babies are doing. As always, Mike and I are here if you ever need anything.
ReplyDeleteJess