Things with Reed continue to hold fairly stead, last week he was pulling himself up into a standing position more but we know that doesn't really mean anything in terms of standing or walking on his own again. But it is encouraging to see him having the leg and trunk strength to continue to do that. We have noticed more hand shakiness but nothing that is preventing him for using his hands. Otherwise he continues to be same old Reed, happy, active and always wanting to be a part of what is going on. He has recently started to like to play games on the ipad which is a huge thing for him because prior to this starting he has had zero interest in screen time. Which we know is a good thing but lets be honest it would be nice to sit and enjoy a Disney movie with him ever so often. We do have an appt coming up in Iowa City with Dr. Perlman just a follow-up to see how he is doing and really to make sure things are not getting worse. The appt is December 15th and at this time all of us (Jesse, Reed and I) will have our blood drawn to be sent over to the Netherlands for Dr. Vam Der Knapp lab to review to hopefully finally pinpoint the mutated gene.
We do have a big decision to make about Reed's in-home therapy through AEA, at 3 years old the therapy transitions to the school so right now we are trying to decide if we want to enroll him in the 3 year old pre-school program or just take him up for the therapy for the time being and wait to enroll him next school year. There are so many pros and cons to this for him so this has been a stressful decision for us to make but hope to have a final decision here this week. Another struggle we have been going through is getting Reed on the state waiver which would make him eligible for additional health benefits. Figuring out paperwork for this has been a headache but I think we are getting close. I am told there is a two year waiting list for this so the sooner we can get him on the list the better. We continue to try and potty train, yes knowing that if we are successful he may lose this ability some day but not wanting to give up on "normal" life things we are going to push through and make a good effort at it. He is pretty good at telling us when he has to go number 2 but has zero interest about telling us when he has to go number 1. He also has zero interest in undies or pull-up also but the "store" may just run out of diapers one day :)
The first snow fall happened last week and Reed loved playing out in the snow. We are very excited for the upcoming Thanksgiving week and can't wait to see our best friend Cole come home! Lots of exciting things happening this time of year. The most exciting being we will have a 3 year old next week!!!
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