Sunday, December 20, 2009

A Little More About Joshua's Appointment

As Andrew mentioned, we were encouraged at Joshua's monthly visit with Dr. Flores. He said that Josh's murmur sounds quieter, his colour looked even better, and developmentally he is right on track for his age. He measured a respectable 62cms (24.5") and a lightish 6kg (13 lbs). He has gained close to a pound in the 3 or so weeks since our last visit though so that is great. He has been crying less and eating more so I had been hoping for a decent gain.

Dr. Flores ordered some bloodwork so we had that done right away. So hard to see Josh screaming with that fat needle in his teeny vein. But the tech got it first try so that was good. Naturally I rushed home with the results and Googled my buns off. From what I could tell his white cells and platelet counts showed an immune reaction- perhaps from the episodes he had at the end of the week? Dr. Flores just said that his CDC was quite normal. He is slightly anemic but apparently that can be normal in a baby his age. I will work on getting more iron in my diet, I think. Bleeding disorders commonly come along with Noonan Syndrome but Josh if anything is on the other side of normal, an excellent clotter it seems. And this is the great news: his calcium levels came in smack dab in the middle of normal! PTL! His phosphorus levels are a bit high and Dr. Flores would like to check that again later on, but as per my Googling perhaps there is a relationship to the now-normal calcium levels. I don't know! I do know that it has been fascinating to see all his different test results.

I put together our insurance claim last night. The tests and consults sure add up! I am grateful for our great insurance coverage. They have been really good to deal with as well.

On Tuesday we see an orthopedist. The geneticist was concerned with the range of movement in his hips so she ordered some x-rays. Both she and Dr. Flores thought that they were probably all good, but she referred me to an orthopedist to be sure, since sonogram is really the best way to be sure on young babies like Josh. I'm glad to have a chance to visit a specialist and get that peace of mind, especially since skeletal deformities can come along with NS as well.

In other great news, good friend Torie scored us an appointment with her highly recommended pediatrician in BC. So grateful to have the opportunity to have Josh assessed by someone with different experience. Also with that consult I would think that the avenue would then be open for a referral to a Canadian specialist, should we need it.

Overall, we think Joshua is doing awesome. We are not wringing our hands about him by any stretch of the imagination. We just recognize the importance of early intervention, and with his diagnosis there is an increased possibility he will require some sort of intervention. So we want to know about any issues sooner than later.

Joshua's personality is showing more and more as he grows and is more comfortable. He has a good sense of humour, I can tell already. Patience isn't his strong suit. He is a visual and social person; he is quietly happy when there are lots of people doing things around him. He is a little on the sensitive side. He is chatty when he's happy, and honestly, it really sounds like he tries to repeat the sounds we make. He thinks it's hilarious when I bicycle his legs. He loves the shower. And he is very attached to his Mommy. Emotionally and physically. Thank God for slings and wraps!

3 comments:

  1. Thanks for sharing all this info Dana. So glad that there is encouraging news (heart, calcium, get to see Torie's pediatrician here...) and great insurance coverage. Gary always asks me what I did before google:) Hopefully now that Josh has calmed down a bit, and is eating more, he will grow, grow, grow! Looking forward to meeting you Josh. Maybe you'll let me hold you?

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  2. Sounds like Josh picked up a few things from his Papa! ;)

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  3. Yippee! Good news. Thanks for the sharing all the details.

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