It's been a while...

Sorry, it's been a while. Life has been a bit hectic lately, and I've been wanting to wait to post until we got some cute pictures of Everett to add, but it has been 15 days since the last post and I understand that the natives are getting restless. So, this will be a pictureless post, but there is a lot that has been going on.

When we last left off, Everett was going to be seeing the pulmonologist for the first time, and was going in for his VCUG.

Well, we went and saw the pulmonologist and everything basically looked as we suspected. His lungs are fine, there is just some concern because his trachea is constricted due to the TEF. The concern also remains about him asparating while he eats. So, Everett got a nebulizer and is now taking Pulmicort and Xoponex. He takes the Pulmicort every morning, and in the evenings as needed. The Xoponex is just for if he is having a really bad day, so we have not had to use it yet.

We had a small scare that we would not be able to fly to San Francisco for the holidays, but after giving us some instructions on the proper precautions to take, we were cleared for flight.

The pulmonologist wanted to see a swallow study done, so we added that onto the VCUG that Friday. Additionally, Everett was diagnosed with trachial and laryngial malasia. Basically, his trachea and his larynx are "floppy" and that is what causes what sounds like labored breathing.

The VCUG went well. They did it unsedated, and Everett did not enjoy having a catheter inserted one bit, but he was a strong boy for us and cooperated. And the verdict is.... no reflux in the kidneys. Yay! :)

As for the swallow study, the little man was SO hungry by the time they fed him the barium that he gulped it all down! They gave it to him in a water/juice consistency, formula consistency, and nectar consistency. While he ate, they used the really big machine to video tape it going down to see where it was going. It only went down his trachea once, and that was with the water/juice consistency. Not a concern. They went ahead and gave us some thickener to use on days when he is just having a hard time controlling the flow of his food. He is a bright little boy and he is able to control the flow of his formula depending on the thickness of it and the size of the nipple. Everyone kept commenting on how "strong" Everett is. We know. :)

Hmmm...let's see. On Monday, 11/12 Everett went to see the physical therapist. He has trouble looking to the left and is beginning to get a flat head on the right. We learned some great exercises and they played on the giant exercise ball, and Everett thought that was just the best thing ever! We will be going back again the Tuesday after Thanksgiving, and hopefully the caregivers will be able to join us to learn all of his new tricks. :) Dylan is supposed to be rounding everyone up, so we'll see. :)

On Friday, 11/16, we went to see the cardiologist. Everett's PDA is small and looks like it is closing up on its own. He has been cleared for all sports and to be raised like a normal little boy with no restrictions. :)

Yesterday, 11/19, ECI came in the morning. Everett has been accepted into the program, and by the school board. He is testing at the 4-6 month level for communication. :) The AI lady said that she has been doing this for 32 years, and he is a smart little fella. :) We thought it was just us. They will be visiting us once a month on a consulting type basis to make sure that he continues to track as he should. At this point, since she is only seeing him monthly, we will not actually have to enroll him in school yet. So, that's a good thing. :)

Then we were off to get his first Synagis shot. He did not like that at all, but it has to be done. He'll be getting it once a month through about April.

Then, we had our ENT appointment. He said that he does not anticipate Everett to have a lot of problems since he does have hearing in one ear. We will keep an eye on the right ear to make sure that it does not degenerate, but for now things look good. We will have another audiology scan done in February, and at some point, we will get some film of his ears to check out his biology.

Whew. Yesterday was busy. :)

So, that is all of our appointments so far. Thursday is Thanksgiving, and we will be spending it with Dylan's family.

Next week we will be getting our family pictures taken. :) We may post some. :)

xoxo
Margot