OUR FAMILY

OUR FAMILY

Saturday, February 26, 2011

infusion 13

My awesome hubby Easton playing at the park
When we left Utah for N.C. it was snowing but North Carolina was having some temps in the high 70's so we took full advantage of this and went to the park for a couple of hours. Easton was excited to be able to play outside on a playground. He took off his shoes and his socks and just ran through the sand like a boy who had been kept inside for the last few months CraZy. The next day we did the infusion which at this point is just like any other infusion to him same ol same old. We also started doing our weekly Elaprase infusion at home it has been quite the adjustment not having to drive 3 hrs. round trip to the hospital once a week what will we ever do with our extra time hahaha we are loving it and it is going really smoothly. And hopefully before to much longer our local hospitals IRB will approve us to receive the IT dose here in Utah then we will only have to travel about every 6 months. My other kids are getting pretty sick of us going and are very ready for this to be done locally so maybe by Aprils dose I guess we'll see.












During the month of January we had our 6 month testing done. These are just some cognitive test and a hearing test that are done every 6 months. They are really helpful in seeing clinical proof that this drug is working. Eastons cognitive exam was through the roof he did so well his score went up dramatically in all of the areas. The Dr. kept presenting him with harder challenges he totally shocked her, she had thing set out for what she thought he would be able to accomplish and he surpassed these and went into even harder things, things that the Dr. never thought he would be able to do they seemed to be very advanced but, he did them and what else was great about this, is when he was presented with things that were more challenging to him you could see the wheels turning in his head he really sat there and thought things out before doing them and if they were even just a little bit wrong he would re-think it and fix it to be right. All this said his scores went up to an IQ of 85 which is in the normal range for his age its still at the lower to moderate end of the scale but still within age appropriate range. I was so excited as was my husband we knew he had come far and now others were seeing it as well.

We also had a hearing test which showed some hearing loss of higher pitched noises this test was done at the end of the day and in a hearing booth not an ABR I think that his hearing is fine I think he was done for the day and kind of quit responding. We will see when he does have an ABR sometime in July.

When we got home I had an email from Easton pre-school teacher they had been doing some evaluations at school with Easton because next year he will be going into kindergarten and we needed to do a placement for him well according to all the people involved they thought he needed to be placed into a higher functioning Sp.Ed classroom well I kind of knew this was coming so it was a shocker but after evaluating the new classroom he would be in for next year they realized he was even functioning academically higher than this class so the next day I was e-mailed about this and told that they were having the regular ed. teacher for kindergarten come into evaluate him and guess what he is on track for regular kindergarten. As you can imagine this news was very exciting but also very intimidating for me I had never even toyed with the idea of Easton in a regular classroom, it wasn't even in my vocabulary. We are still considering where the best placement for him will be because socially he is behind his peers and his speech is still behind. The social part I can see might be a little bit my doing because he has been to the Dr.s so much I find that I am his friend I'm the one he plays with and the kids his own age in our neighborhood I haven't really had him interacting with them. He's been at the Sp.Ed. preschool with kids that are lower functioning and by the time he gets home its been late enough in the afternoon that play dates don't' seem doable. I do think if I had been having frequent play dates with "regular" kids he wouldn't be socially behind and if he was it wouldn't be that bad. At this visit we also learned that the port they use to give the IT medicine was broke and would need to be replaced. So we came back a week or so later and had the surgery done it went very well and he is doing well. They used the new port this time for his 13Th doses and worked great.
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