H1N1, Endocrinologist & Pink eye! Oh My!

Oh my is right! Last Monday Jonathan was diagnosed with H1N1 and we were ordered to stay home for 5 days. His fever was as high as 102.6. Luckily that was as bad as it got. The high fever lasted 2 days and then he had a low grade fever for one day and then he was fine...a bit off and not his normal self but he was fine.

Friday we had Zachary's endocrinologist appointment. Many children with NS require growth hormone therapy (GHT) so the geneticist referred us to the endo. She was wonderful. She treats NS kids and immediately picked up on the features of NS that are present in Zachary. She also pointed out that he has a high arch in his palate. I read how many NS kids had feeding issues due to that but it was never brought to our attention. I always assumed his eating problems were from him being so sick and the reflux but I guess this contributed to it as well. I always find it interesting to see what new information a new doctor on his team will pass on to us. Anyway, at this time Zachary is on the "normal" growth chart so she is not pushing GHT. If his growing tapers off then we will have to re-evaluate that. She wants to see him in a year and at that time we will do blood work and check his heart again and eventually do bone age test. But for now, we proceed as normal! Do you know that this means in 2010 Zachary will only need to see 2 specialist versus the 5 he saw this year? Well I think he will need to see the ENT too so maybe 3 but still...it will only be one visit with them...not multiple!!! Wow!

Then on Saturday afternoon Zachary's eye started having some green drainage...nice! Sunday he woke up with both eyes sealed shut. I took him to Walgreen's Take Care Clinic and he had pink eye in both eyes...nice way to end a crazy week!!! But he is on the mend and things are back to normal.

We did get a call back that Jason tested negative for the NS gene so that means Zachary's gene mutation was spontaneous. He just wanted to be his own person and make his own mark in the world.

It's been a while...

And I do apologize. Things have been busy here but a good busy. Our house, or rather the boys, were hit hard with a cough. Nothing too serious but if we go in public I know people are looking at us and thinking, "Stay away from them! They have the swine flu or something!" but no we just have coughs...it's all good.

We met with a speech therapist and she told me that she didn't think his delay was quite 50% but because he is already in the First Steps program, he will still qualify for therapy for his speech if we feel he needs it. I will get more info at our meeting later this month. She gave me lots of tips. Mainly we need to teach Zachary meaning of things...like he calls his cup/drink "nee nee" and if he is hungry he says "murmur". Our focus now is when he says one of those terms to correct him and try to get him to repeat it. He is talking more but is just not as descriptive. All in all, I was pretty pleased. I knew he was delayed and I expected it to be worse so this news was good.

Tomorrow I take him to pick up his SureSteps and let's just hope he has no issues wearing them! His walking is getting better and he wants to walk more and more. I love that he will shake his head no and mean it. He is learning so much and sadly, joining the terrible 2's. Ugh!

We took down his crib last week and while they go to bed in the same room it takes them forever to go to sleep. It is crazy! You can hear them talking, playing and fighting for well over 2 hours each night. But I remember laying in the room I shared with my sister Debbie and talking for hours too. So it's normal and it's good for them.