Monday, January 28, 2008

Another Early Morning

Aiden went to bed a little after 10pm last night. And he slept all night. Problem is he was up at 5:20 this morning. And there was no going back to sleep for him. Instead, he was up playing and talking. I'm surprised he didn't wake up the house. While I showered, he played.

I went to give him his second bottle of the day which included his morning medications at 7am. This is when he decided he wanted to go back to sleep. The only thing is, he had to get ready for school. On our drive to school, he took a nap. He woke up when I picked him up from his car seat and once he realized he was at school, he was ready to go for the day. Once the other kids started to arrive, Mom no longer existed.

After I left school, I called Pam, Rhett's mom, to see how she was doing this morning. Yes, there is a time difference and normally I wouldn't call Pam at 7 in the morning her time. However, Pam and Rhett were up as Rhett is going in for his MRI today. And he has to go under general anesthesia for this. Now today, January 28, is a bad memory for Pam and it is the same date that Rhett was overdosed and at the same hospital they are going today. Please keep Pam and Rhett in your prayers today.

Also, I got a letter from Aiden's ophthalmologist for Aiden's school. Aiden had an ophthalmic evaluation earlier this month. The following is a summary of the evaluation:

Nystagmus - (shaking of the eyes). Aiden has had this since birth and it is common in children with Down syndrome. Fortunately, it is gettnig better.
Down syndrome - well, we knew that one
Right nasolacrimal duct obstruction - (clogged tear duct) surgery when he is stronger. Click here for that story
Hyperopia and astigmatism (Aiden is far sided and has my bad eye site. However, both is common in children with Down syndrome)
Improved cortical visual delay (Aiden's tracking objects with his eyes)

Well, we go back in July for an eye exam.

Also, if you haven't noticed, my Blogroll has gotten longer. Most of the blogs listed are Down syndrome related. There is one, however, that isn't about Down syndrome. Finding Normal, is an online friend of mine. We met on the Fall Due Dates 2006 forum while we were both pregnant. Debbie's daughter, Addison, was born with mosaic Trisomy 9 a rare chromosomal condition. Addison, like Aiden, has developmental delays and has undergone several plastic surgeries to correct cranio facial issues caused by fused skull bones.

Debbie hasn't been to the Due Date forum in quite some time. I can understand why. It is hard to see kids who are the same age as yours reaching all these milestones that our kids haven't even thougt about reaching. Their kids are all walking, while ours continue to struggle with crawling. Due to feeding issues or other health issues, our kids haven't broke the 20 pound mark, while others are these huge "chunks" of flesh. Don't get me wrong, it's great that these kids are reaching their milestones, but sometimes it hurts also.

3 Letters to the editor:

  1. One slight correction--it's trisomy 9, which is even more rare. We could have more fun and talk about the deletion of the tip of 16 but that would require some wine and perhaps a sheet or 2 of paper. The cranials were mostly to correct fused skull sutures, and the feeding issues are due to breathing problems. Okay, that's more than one correction, but the good news is that I will not quiz you at a later date about her diagnoses! :)
    Thanks for the mention! I'm new to blogspot earlier this month.
    And did I ever tell you Addison would've been Aiden if she was a he?
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  2. Oops! I revised my entry. And thank you for not quizzing me, I would definately fail. I barely remember what I did yesterday, that's why I blog. LOL
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  3. I guess we can join the not quite 20lbs club. Although fully clothed , just finished a bottole and with a completely wet diaper he did tip the scales at 20lbs on the nose. Unfortunately he lost some ground being sick for a week. UGH! Aiden & Noah should get together as neither sleep in late. Noah usually gets up between 4-4:30am.Dbl UGH!
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