So far this winter has started a whole lot better for Ethan than the last one! He managed to stay healthy for the month of December (and January) despite Lorelei having a cough and me having had a cold. We had a great Christmas with Clayton's brothers and sister-in-law and rung in a nice quiet New Year.
I just realized, I haven't shared a picture of Ethan in his cast and doing stuff...this one was taken just three days after his cast went on. Doesn't he look great?!?
The start of the year has been a busy one for us. The first week Ethan and I spent two mornings at two different hospitals to get all of his appointments in. The next week he had a lull in appointments but the rest of the month shaped up to be pretty busy - for me at least.
On the 5th, Ethan had to have more blood drawn for the Immunologist and I had a forgetful mommy moment as I was supposed to bring another requisition for blood work for the Endocrinologist. Ethan did a great job bleeding at that appointment so it really is a shame that we'll have to poke him again. :( I will have to try to remember to ask them not to use that kind of 'band-aid' again as it left a rash on his arm for quite some time.
While getting his blood work done, he had his g-tube looked at by the nurse who specializes in them and she said it was definitely irritated and on the verge of being infected. So we did our best and avoided an infection. After that appointment we went to see his Immunologist at the other hospital. She said the preliminary tests show that he does have an immune system and is building immunities to some of the things he'd previously had immunizations for. But that the count related to fighting viruses was low which could have meant he was fighting something at the time. She will check that again when his counts come back - they had to be sent away and we should have results in about 6 weeks. Since she is also an allergist, I asked her if some of his issues could be allergy related since we have a cat and dog. So we tested Ethan for a few common allergies...and he is NOT allergic to the cat nor the dog. But he does have an allergy to a common outdoor mould that appears around fall and an allergy to dust mites. Given where we live the dust mites are pretty unavoidable but we can cover mattresses, etc to protect him from them.
At one point over the holidays Clayton & I tried to put his shirt back on under the cast...but we did not have any success. Ethan was very patient with us during the endeavour. One of his nurses suggested her and I try again to put it on and we were successful! Only to have him be sick on it the day after the above appointment. It was our second day of busy appointments and we started with an alteration to his cast and the surgeon was happy with Ethan's progress in the cast. Then we had to go to another hospital to have his eyes checked. The patching we have been doing for a couple years now has been successful in keeping the vision in his left eye and we are to continue with it. All in all, his eyes are doing well. :) It was at this second appointment that Ethan got sick and I had to remove his casting shirt again. (We were wondering if it was contributing to the irritation around his g-tube as the hole was pretty close in some spots.)
We had a really nice full weekend the start of January so I went out with Lorelei to do some chalk art. Here is our masterpiece with the artwork designer. (I'm not quite sure about her pose but maybe she thought it would warm her some...it was surprisingly cool for such a sunny day!)
This was the second time Lorelei and I got creative. We baked some Christmas cookies (as you can see in the collage) for the first time together. It's hard to believe it took until this year for me to finally get everything prepped for us to make them. I had hoped to get Ethan involved in the mixing of ingredients but he was napping when we started. Lorelei's uncle Ammo helped guide us with the mixing of batter and then as he too took a nap, and Lorelei grew bored of cutting out the shapes, I was left to finish baking. Thankfully Clayton was around to help keep an eye on the cookies for timing of baking. In the photo the sugar cookies are a bit browned around the edges as they were the first batch, by the time I was done they were nice and light coloured all over. And although we never did get to decorating them, I must say they were pretty tasty! I'll have to do this again next year!
Back to appointments... We are going to explore some new speech tools for Ethan but I have not really been given the device so cannot tell you how he is taking to it. We have been trying to remember to use his pictures more when talking to him. And the iPad he got for Christmas is giving him experience with touching a screen with one finger to have it respond as he would like. (He is really enjoying the iPad! Thank you to everyone who pitched in to make this gift happen for him!)
I had ordered a second casting shirt that came in around the time we had to remove Ethan's original shirt. It gave us the opportunity to have the new one altered (a hole put in) and to have the g-tube hole in the original one increased. By the time we got the shirts back, cleaned and dried, Clayton and I put Ethan's original casting shirt back on on the 22nd. The following pictures are of him on the morning of January 25th.
I think the cast is starting to get snug. He had about a week of sleepless nights, waking with gas pains frequently.
Here he is stuffed into his car seat in a winter coat that is too large for him but just right around the cast. He does not look the image of comfortable here, now does he?! We were off to a different kind of appointment for him...
His cast removal. Doesn't he look great?! The mask is for his protection as are still doing our best to keep him healthy and the technician who removed his cast was recovering from a cold.
He had to have the cast removed because he had an MRI of his brain last Thursday. We won't know the results of the MRI until Wednesday when we meet with his neurosurgeon. We will be meeting with her while he is in the OR getting his second cast put on. Besides a little skin irritation and one red spot he has done well in and out of the cast. I will try to grab some cast free pictures before Wednesday.
