Yesterday was Isaiah's "big evaluation" as the CDD. Overall things went fairly well. We were at the hospital going from appointment to appointment for 7 hours so I could probably write a ten page summery about what happened and what we learned, but I'm going to try and keep this update a little shorter ;)
When we arrived at the UIHC CDD we first met with a nurse who checked Isaiah's vitals and did measurements and weight checks. Isaiah weighed in at 18lbs 11oz which is down about a pound from his 12 month check up. He was 27 3/4 inches (peanut!) and his vitals were good.
Next we met the social worker who went over what all we were going to be doing for the day, the costs, support systems in place for us and gave us all sorts of information on the services Isaiah will get when he gets on title 19 for disability (for being delayed in multiple areas). We were really pleased to hear some of the resources that will be available to us. She also went over all of his upcoming appointments and pretty much just made sure that Brandon and I felt okay with things and had enough family/friend support in the area to help out when we need. We were also introduced to another social worker (who I kid you not looked like Taylor Swift's clone) who was assigned to follow us around for the day to observe and help explain everything to us, help us with questions, and pretty much just help us care for Isaiah during the appointments and breaks. I was incredibly grateful for her help, and Isaiah really liked her too.
After this meeting we were taken to meet a nutritionalist who went over his daily schedule and calculated is caloric intake, and went over what his caloric intake should be then offered lots of tips and things we needed to do to help him with weight gain.
Next up we had a dental exam for Isaiah. He was not happy about it!
We then had a bit of a break while we waited for the therapists. During this time the social worked and I talked about the private therapy (he will be going to Children's Therapy Center in North Liberty) and how to apply for grants to help cover the cost before we can get disability coverage (there is a year long wait for therapy coverage with title 19, but he needs to start before then so we will have to cover the cost). It sounds complicated, but she will be able to help us with all the grant application stuff when we get started.
We then got to meet the PT, OT and ST (physical, occupational, and speech therapists). They all did a group evaluation so Isaiah got to get down and play while they all played and watched. The OT was pretty pleased and put him at a 12 month level. So not delayed (he's 13.5 months). He is great with his hands and the only reason for OT would be for feeding, and we already have OT with early access for that, plus a feeding therapist so there is no reason for any more OT. YAY. The physical therapist evaluated him at 7-8 months. One month ago he was evaluated at a 6-7 month level, so in one month he has made one month progress which is awesome! While it's way to early to make any conclusions from that, it does mean that so far the gap between age and skill level has not increased, so I was really pleased with that. The speech therapist put him all over the place, averaging at 8 months (also a month improved) but she did say he had some scattered skills that were anywhere from 6-12 months. He still has no words, but he has made a ton of progress in just the last few months so hearing that he has a few skills in the 10-12 month range was really good to hear. She also said that she does not believe we are dealing with a cognitive delay. Some kids are delayed in other skills because their thinking skills are behind, but she doesn't think Isaiah has any intellectual disability. Also REALLY GOOD NEWS! Isaiah is scheduled for cognitive testing in May, and the therapists want us to go ahead and keep that appointment for now, just because the wait list for that testing is 6+ months, but she thinks at his follow up testing we will be able to cancel that appointment :)
We then met with a neuropsychology pediatrician. She did a physical and went over his medical history. She was concerned with his size (he is the weight and length of an average 7 month old). She thought that he was small even for having small relatives and would expect him to be similar in size to his brothers. His head size is also small. When we go back for the next evaluation she will have brain scans done if she isn't happy with head growth. Definitely keep him in your prayers that he will grow well in the next 4 months! She said that his muscle tone was good, but commented about a few things that were 'off' and decided that he should have some blood work done to test for some muscular disorders. So, when she was done we went to the main hospital to get his blood taken (not fun for any of us!) and we were finally DONE for the day!
The plan. In addition to his services he is already getting with early access we are going to start private physical therapy. We are going to wait on additional speech until the next evaluation since she saw a lot of emerging skills. The speech therapist said that she thinks when we come back for the next evaluation that he will have made a lot of progress with what we are already doing. If not, we will talk about private therapy for speech as well. We will go back in April for another evaluation and see how he has progressed! Please keep my lil guy in your prayers. We are hoping his blood work all comes back normal, and that his growth will be good so no head scans will need to be done. So for now...he continues with early access (physical therapy, his teacher working with him, occupational therapy for food issues, our nutritionalist), feeding therapy at the CDD and we will start private physical therapy.
Feeding therapy update: Isaiah also had another feeding therapy session today. These sessions are 3 hours with a lot of play in-between working on his eating skills and working through some negative behaviors. Today was better than the last time (I managed not to cry), but because of his weight loss and some of the behaviors he still has his therapist recommended we do a 3 week intense therapy thing. When we do this we will be at the CDD for the first half of the day (3 hour sessions) monday-friday for 3 weeks to really work on getting him eating well. We can only do this if our insurance company can cover it (out of pocket it's $9,000!!!!!). We got on the wait list for that, but the wait is really really long, so unless there are lots of cancelations we are looking at summer for that. His therapist said that if our insurance agrees to cover today's session and the next they will likely cover that as well. We go back for his next session in April (with Skype sessions in between as needed) so if he does really well we can always get off the wait list for the 3 week thing.
So...that's all for this week so far! We will Skype with his early access nutritionalist tomorrow morning, and he has his teacher coming Friday. Then we will have a break or the weekend! Next week will be pretty busy for him as well. But after that, we will get in a routine of 1-2 therapy sessions per week, and when we start private therapy we will be on a really routine schedule of 2x (one in home, one at the center) per week.
I also have to say how awesome the big brothers are! They have been pulled out of bed hours before they are used to getting up and dragged out in the cold to be dropped of before Isaiah's appointments. They haven't complained once :)
