June 12 = Evaluation Day

Today we had Liam's evaluation for the Infants & Toddlers Program that is offered through our county's school system.  Last week a coordinator came out to the house and got some background information on him so she could decide what specialists needed to be at the evaluation today and told us what kinds of services their program offers- they offer PT, OT and speech therapy- and here's the kicker- the therapists come to the house!  In order to qualify there has to be an official diagnosis (NF isn't typically diagnosed until puberty) or the child has to have a 25% delay in development in whatever area(s) you're going for.  So today we drove to an elementary school about 30 minutes away and met with a physical therapist, occupational therapist, speech therapist and the lady that came to our house last week who is a cognitive development specialist.  They had different toys for him to play with and asked us questions and all four of them completed their evaluations at the same time- painless compared to the other evaluations we've had to do since moving up here.  At 21 months, in order for him to be considered 25% or more delayed, he had to measure below 15 months which he did in all four areas.  This was not surprising but what was nice to hear was that in order for him to score at a certain age level, he has to meet all the skills that are judged to be appropriate for that age level.  So he measures at a 12 month level in speech but the speech therapist told us while he had all the skills up to the 12 month level, he also had a strong scattering of skills well past 12 months, all the way up to 21 months which is age appropriate!  So there are some pieces missing but saying he's at a 12 month level doesn't really represent his skills.  All of the specialists are going to meet sometime before next Thursday and then on Thursday, the physical therapist (since she's already going to be in our area anyway) is going to come by the house to present their plan to us and we sign and then we can start scheduling his appointments.  So now Zachary and I are trying to decide whether or not to keep him in the programs we already have going...

The way Tricare works is that Liam's PCM (Primary Care Manager) writes a referral for the service he needs.  We then get a letter in the mail with the name and phone number of the person Tricare wants us to see.  We call, make an appointment, and everything flows smoothly from there.  Haha.  For physical therapy, I called the practice they assigned us to but there were no pediatric physical therapists working there.  So I called Tricare to get the name/number of a place that would be able to help Liam but they don't have a separate list of practices with pediatric therapists so the person I was talking to gave me a list of about 10 places to call to see if they had pediatric therapists working there.  That night we went to dinner at Double T's Diner in Annapolis and I went to the bathroom (shocking) and there was a flyer for Cypress Creek Therapy (not one of the 10 places the Tricare lady suggested) where they have PT, OT and speech in the same building!  So I called them on the way home and they had a wait list for OT and speech but we went ahead and scheduled a PT evaluation and so I called Tricare the next day and got the referral fixed.  He had his eval last week and his first two appointments this week.  I'm definitely going to keep his appointments there while we're waiting to see how often the Infants & Toddlers program can provide appointments for him but OT and speech... I'm a little less certain about.

When we went to his OT evaluation, the lady was really nice but seemed a little uncertain about what to do with Liam.  Come to find out, he is the only patient under 2 she's worked with.  So I'm not feeling great about this place.  Cypress Creek, where he has PT, called letting us know they had a spot on the wait list become available but since our referral is with the first place, we have to get that switched.  And then with speech, for some reason, speech is different and Tricare has to have the evaluation before they'll approve the visits and that has been a nightmare.  I have a case manager working on it but she hasn't gotten anywhere and then Cypress Creek called two days ago saying a spot came open for speech.  So now I'm tempted to try to get all his referrals switched over to Cypress Creek because when Malia gets here, going to three places twice a week each is going to be rough.  Also, I liked the speech therapist but it's their policy that the parent stays in the waiting room while the therapist works with the child.  Now this sounds like a glorious opportunity for me to read in peace but it doesn't help me learn what kinds of exercises I should be doing with Liam at home to help him.  Thirty minutes twice a week doesn't seem like enough time to make up the 10-12 month deficit he's showing.  

The Infants & Toddlers Program have a coaching philosophy meaning they show us what to do- the parents are super involved which makes sense to me.  They come to the house so they can see what resources you have available.  We loved Brooks Rehab but there were times when they would show us something to do at home that required a surface at, say, chest height.  Well they had benches with adjustable height and we have to go home and check the ottoman or his little table or the side table in the living room- trying to find something that is the appropriate height and failing.  This way the specialists can find things we already have in our apartment that we can use.  I think this is just going to be really good for him- I'm super excited!

I don't have any pictures from his evaluation today so I'll have to share another little Liam story so I can include the picture that matches it.  For his birthday, I made a Pinterest board of ideas for gifts for Liam's birthday all centered around a Red Sox theme for his new bedroom.  One of my pins was a red bean bag chair which his grandparents got him.  We have it in our living room right now instead of his room and it is now his designated milk drinking chair.  He never sits still for very long but he will sit in this chair and drink his entire sippy cup of milk.