I just realized it has been a little over a month since my last blog post-oops! I'm not sure where the days went, but apparently they flew by. Time has flown by!
Speaking of time flying by, in a few hours, our Superman will be 4 years old and he knows it! If you ask him how old he is, he will hold up 4 fingers. :)
This past month has consisted of weekends getting out and about and the weekdays consisting of multiple trips to CHLA for follow ups and therapies. All which are going very well. We had a follow up appointment this past Tuesday and have been cleared to return in 1 month. But before doing that, Alexander will be going to the Cauterization Lab. In fact, this coming Monday, February 13th, he will go to the Cath lab for a biopsy of his heart, to ensure there is no rejection (routine biopsy). His meds have slightly changed since last month, but nothing drastic. He is still on a steriod which is resulting in full cheeks, that we all love. :) He's continuing to really show how much of a new boy he is, as he runs more, is beginning to jump and really trying to communicate with us. He gets extremely frustrated if we don't know what he is telling us via sign language and gets even more frustrated if he can't find it on his communication device.
We had his IEP two weeks ago and needless to say, we didn't get what we asked for and are now having to really advocate for Alexander. Advocate on why we feel he needs the services to be provided in the home (even though the transplant has written a letter to the school district stating he cannot return to school for 1 year because of suppressed immune system). After receiving the letter and having the IEP, the school district still does not want to provide Alexander with the full amount of hours in home or provide speech therapy. Their response for not being able to provide an evaluation with an AAC specialist is because "he needs to be evaluated in an education setting". When we inquired about speech in the home, without the AAC evaluation, we were told the school could contract with a therapist but that Alexander would need to come to the school! Needless to say, Wes and I are frustrated and taking it to the next step. Stay tuned for information on that in the next few weeks.
So this weekend we hope for Alexander to have a wonderful and memorable birthday weekend. We pray that his cath goes well on Monday, that there is no reason for him to be inpatient, and the biopsy results come back showing no signs of rejection.
Here are a few photos over the past month:
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| Signing Time Concert & Meet n' Greet with Rachel & Hopkins. Alexander was thrilled. |
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| Alexander's first time seeing snow! |
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| and he enjoyed it! :) |
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| Going down a BIG BOY slide for the first time. He LOVED it! |
I just realized it has been a little over a month since my last blog post-oops! I'm not sure where the days went, but apparently they flew by. Time has flown by!
We had his IEP two weeks ago and needless to say, we didn't get what we asked for and are now having to really advocate for Alexander. Advocate on why we feel he needs the services to be provided in the home (even though the transplant has written a letter to the school district stating he cannot return to school for 1 year because of suppressed immune system). After receiving the letter and having the IEP, the school district still does not want to provide Alexander with the full amount of hours in home or provide speech therapy. Their response for not being able to provide an evaluation with an AAC specialist is because "he needs to be evaluated in an education setting". When we inquired about speech in the home, without the AAC evaluation, we were told the school could contract with a therapist but that Alexander would need to come to the school! Needless to say, Wes and I are frustrated and taking it to the next step. Stay tuned for information on that in the next few weeks.
