If you've been following along, you'll note that last week Sadie met her new DDD coordinator (this is the state program that will pay for all her therapies) and she met a developmental psychologist named Dr. Blackham, who evaluated Sadie's development to see where she really is as far as delays. Both of these meetings went really well.
Annie is our DDD coordinator and she got to see the best of Sadie. No screaming, no whining, just happy baby playing on the floor and allowing mommy and Annie to talk. Annie gave me a list of different places to call who do therapies at home (because that really is our preference) and I started calling immediately. She had a lot of good advice, and even has a daughter who is in DDD for developmental delays, so she really knows the ropes. I really liked Annie and I think she'll be a good resource and a great help on our journey through the system.
The next morning we saw Dr. Blackham. She is with PCH (Phoenix Children's Hospital) and much of her evaluation was for the purposes of the study Sadie is enrolled in. When Sadie was officially considered a graduate of the NICU, Dr. Carballo (the neonatologist who's in charge of this cooling therapy at PCH) asked us to be part of a follow-up study that will watch Sadie until she's like 18 or 21 or something. She will get regular evals on her development, and they'll gain records of all her pediatrician, neurologist, and therapy appointments. It's actually pretty cool that we're involved in this and that we were lucky enough to receive this cutting edge treatment.
Dr. Blackham sent me some paperwork in the mail to fill out before our appointment regarding Sadie's development in certain areas, specifically her sensory development. She called today with the results/scores of these profiles (combined with the tests she also did there in her office that morning). We didn't really learn anything new, we kind of already had an idea of everything she told us. However, it's interesting to nail it down, have our suspicions medically supported, and have a clearer path toward what needs to be worked on through therapies.
Sadie's lowest area of development is her motor skills. This is the area of the brain they told us in the hospital had the most damage. For her fine motor skills, Sadie's development is equivalent to a 1 month old. This is largely due to the fists. She can't grab and hold on to things because her hands are always in fists. On her gross motor skills, she was evaluated at 3 months 10 days. That's not bad, only a month behind. Sadie has an appointment Thursday June 17 to be evaluated with an occupational therapist. OT is going to really be good for Sadie, get those hands open and start grabbing and holding on to things!
Sadie's cognitive development was evaluated as borderline. Dr. Blackham said she's in the average/low average range, but this is largely due to the fists. In this area she's also at 3 months 10 days. But as soon as we get those fists open and those hands doing stuff, this area will jump tremendously, I imagine. That makes me really happy! We have a very strong, smart girl on our hands!!
Dr. Blackham's evaluation confirmed the area I indicated that I thought was her strongest, her language skills. Sadie communicates really well...sometimes too well! Her score was age appropriate and her expressive language, meaning the sounds she makes is the same as a 5 month old (woo-hoo!), while her receptive, how she reacts to sounds is at 4 months 10 days (Sadie was 4 months and 16 days at the time of this appointment).
Sadie's adaptive behavior evaluated 4 different areas and she fell just slightly below her age level in all areas, except her language, which was right on target.
Now here's the interesting part, Sadie's sensory profile scores. Sadie is highly sensitive to sensory input and therefore more reactive than a normal baby to what's going on around her. (duh) This is why she screams in the car. This is why moving her to her own room at night was such a disaster. This is why she won't nap! The evaluation said that she has a low threshold for sensory input. This is the reason for her fussiness and why she tends to overreact sooner than other babies her age (I SURE hope she grows out of that before she's 10!) Because she's so sensitive to the slightest changes, Dr. Blackham said it's more important than ever to have her on a schedule. She said most babies need a schedule, but for Sadie, it's absolutely necessary for the well-being of our household. This means either 1. we go down for a nap at the SAME TIME everyday, or 2. we just make sure there is the same amount of time between naps. I think it also might be beneficial to start our day the same way every morning, so instead of just doing my C25K every other day, we'll go for walks on the in-between days. I also need to establish a nap-time routine that we can start 20-30 minutes before each nap time. Any ideas? I'm thinking read a book (maybe even the same one everyday), listen to some music, lay down together, etc. Dr. Blackham mentioned that therapies will help her to regulate herself and ultimately help her sleep. I am also toying with an idea about taking her for a SHORT car ride everyday at the same time to keep with the schedule and to slowly introduce the stimulation of the car. Any ideas on that?
Sadie also has an evaluation with a speech therapist next week. At her age, speech therapy is focused on feeding. I am really hoping that with some work, Sadie will learn to take a bottle and a pacifier. The pacifier is important because she really likes to suck herself to sleep. If she can use a pacifier instead of me, this might give me a break. Keep that on your prayer lists too!
Overall, I think Sadie is doing remarkably well. She's definitely doing MUCH better than we ever thought in the beginning!! Looks like our baby is going to be just fine. We'll start her therapies next week (hopefully a physical therapist calls me soon), and by the next evaluation we'll see some improvement in her motor skills and (praying with fingers crossed!) in her sensory development!
PS. Sadie LOVES the pool!! Check out the video of her going under water!
I think you are right on for nap time. I had about 3 books that I would read to Dominic when he was little. Same ones every nap and at bed time. They are still some of his favorite books. :) I also sang to both my kids. I picked one or two songs and sang them everytime they went to sleep. My 3 year still wants me to sing to her before bed at night. And doing it the same way makes their brain tell their body it is time for sleep. We sing lots of songs and read lots of books, but there are speical ones for bedtime...
ReplyDeleteI think your car ride idea is great also...just enough to get her familiar with it but not enough that she gets over worked up. Dominic had sensory issues when he was little due to being so overdue. It is still easy for him to be overwhelmed especially by loud noices and bright lights.
Walking on days you don't work out it great. I did that with both my kids, and we was something we all looked forward to and now we stop at the park at the end. You are smart lady. I think you are on the right track and you know what is good for your baby even without the medical back up. So glad you had some positive news and are going to be able to get some therapies!