There are so many who ask me all the time, "How is Ammon doing?". It's so nice to know that many people think about and care for him. I never thought I would forget who I have told and who I haven't, but I do. Anyway here is the happenings this past month.
On Feb. 2nd I took him into same day surgery to be put out under general anesthesia for recapping of 2 teeth (he grinds his teeth a lot and has worn down his caps from 1 1/2yrs ago) plus regular x-rays and cleaning (that showed more decay from his reflux)...a routine Echo cardiogram to make sure all his heart birth defects are gone...regular botox injections on his calves and abductor muscles...and an ultasound of his Thyroid (that's our newest problem). He was getting over a cold that he's had for about 2 weeks, but I felt like he was doing better. The anesthesiologist said normally they make you wait 6 weeks after a cold, but Ammon isn't normal and we did a lot of coordinating with 4 doctor offices to eliminate extra visits/anesthesia, so we both felt okay about it. Well he wasn't able to breath without oxygen when he woke up. I tried to comfort him and do whatever all day to try to make him better, but his oxygen stats just wouldn't stay up. The nurses were all asking me what I thought and I said he could have been like this yesterday, but he did seem a little more stuffy and labored breathing, so we went home that night with oxygen. I had to sleep holding his hands down, so he wouldn't pull the tubes out of his nose (it appears Ammon forgot what it's like to have oxygen tubes, which I guess is a good thing in many regards). The next day he seemed worse off and had tons of congestion that had moved to his lungs. That's when I started really getting stressed. I start getting this deja vu feeling of all the times his colds have turned into pneumonia or RSV, and all the nights spent at the hospital. I went into "battle mode" suctioning his nose every hour, layering on vicks, holding him over the humidifier all day, holding him in the shower, holding him so he could sleep up right for naps and at night (no shortage of prayers in all this either). Well, it all worked. We got discharged from the oxygen and about a week later he laughed with Brynn in bed one afternoon. That's when I can tell he's doing better. It's one thing when your child is sick, but its another when they don't respond to anything you do and can't tell you how they feel. The last few days I have seen even more improvement. He started rolling over again to get things. He shouts out when I talk to him-he must have had a good Valentine's party at school, his eyes really lit up when I asked him about it. In the bath he touched his hands behind his back! I have never seen him do that. I hold him in a sitting position for a little while so he can splash his hands and he was moving his fingers behind his back and touched his other hand. I haven't had one of those "my child's first time..." moments for a while. It was awesome (I'll try not to get too emotional)!
Two more things that have pulled us through..sunshine-the unexpected warm weather the last week have really helped us..second my Dad has been here to help me while Brian is out of town-I can't thank him enough (Brian here, I can't thank you enough either Steve, you Rock!). Usually I get sick after going through so much with Ammon. This time I was sick before he got sick and then my Dad has totally eased my stress and let me get some rest!
So results..Ammon's Echo looked fine, we are still waiting on the Thyroid. Today I went back to Primary Childrens Hospital for a bone age x-ray, so they will look at everything together and probably prescribe some thyroid medication. We still are battling the seizures. It's interesting they haven't been as bad since he has been sick. In January, I went to Ammon's neurologist with Brian and just cried because he still has small seizures everyday. He just isn't the same as far as interacting, reacting, wanting to do anything (see this prior post) (Brian here; Summer is by far the toughest most loving person I know; she is constantly attending appointments, doing treatments, and literally taking care of all Ammon's needs every day; through it all, she rarely let's all this get to her, she is amazing).
At the end of this month I am meeting with a nutrition specialist to discuss the ketogenic diet to see if that is something we should do (I'll post more on this; this could be the breakthrough and relief that Ammon needs, and he'll need all our prayers through this experience). However, Ammon is doing good and happy today! If he maintains today's behavior, I can live with it. My new goal is just to have him smile once everyday without crying (he's been crying a lot which is new too). Sorry for my ramblings, but I know it helps to have more information to understand Ammon and why I don't take the time to figure out how to turn the pictures sideways. We all love this little guy so much and are so grateful for him and the blessings he brings into our lives.
Thanks Paki-we're all Giants fans!
