New Year

Wow! I didn't realize that I hadn't written since the first of the year and so much has happened.

We finished with therapy the last week of December and had plans to take January off. Two weeks later, I had Jason take Chris to the doctor to have his ears checked because he hadn't been acting right and was draining green goo out of his ear. Doc said that his lungs were sounding bad, so we xray'd his lungs and low and behold, and infiltrate - - or pneumonia. My heart sunk! This is what we had been working against the whole time. He gave us 2 options, #1 therapy again or #2 let Dr. Prestridge and Dr. Murphy know which could possibly lead to a feeding tube. If you have to ask...we started therapy again.

We did a week of therapy and Jen and I thought back and forth as to what could have happened and what could have led to it. After all our thinking...we realized we weren't exactly sure what it was. In the meantime, Jason's Grandmother passed away and so we missed a couple and then went again.

He had a rough 3 days. He was coughing and choking and aspirating and at the end of the day, he sounded horrible and would have stridor and all I could do was sit there and hold him. Dr. Murphy had fortunately told me that with him aspirating, it would cause his larnynx to spasm and cause the stridor. He said that as long as it went away it was okay and to be expected with how much he was aspirating.

I felt like we were going backwards and fast. I hadn't changed anything and kept a very close eye on everything that went in his mouth. Jen reassured me that he had made huge changes, and after reading my last post, I am reminded that we are further than I tought. We visited Dr. K while we were in Omaha and come to find out Chris had a plugged ear tube which caused an ear infection which causes thicker secretions which makes him unable to swallow effectively. Like that chain? My anxiety dropped significantly after seeing Dr. K because had their not been an ear infection, there was going to be a "Come to Jesus" talk. An ear infection was the only thing that Jen and I hadn't thought of that could be causing the issues.

Since then we have continued therapy and then this coming week we will do a swallow study and visit with Dr. Prestridge. I am so nervous I could puke. So much is riding on this study.

In the mean time, we started PT in Omaha and the PT that began working with us, gave us excercises to do with him and things to change for him and it seemed liked we made leaps and bounds. Bounds so big to the point that Chris even took a few steps across the living room behind his push toy. Jason was home so we could both enjoy the excitement and I am not gonna lie...I was in tears! Jason thought I was a nerd, but they didn't know when this would happen. Unfortunately since then, we have only done it once or twice.

I also took him to visit my cousin who is a chiropractor. He adjusted him and his wife did some cranial/sacral on him, which I'm still not sure what it is, but I'm open for anything. The first time Trent adjusted him the day after was horrible. We couldn't put him down and he still fussed and that night he didn't sleep. Tiff had told me to let them know if he remained fussy so I made a 911 call to them and took him back in on a Saturday...Praise Jesus for awesome people and a small town!! :) Trent thought that he had stimulation overload as his spine was so restricted and tight. He adjusted him again and we came home and he took a 3.5 hour nap and woke up as my happy baby again. Since then, we have reached over our head, which we have never done. I jokingly told Tiff the other day that I had thought about taking him back and ask to put him back as my house was baby proofed as far as he could reach! Now, I need to reassess! ;) The other thing that Trent suggested was to have me cut back on his milk intake as milk increases the thickness of secretions...after that, I thought....DUH!

Our aspirating and stridor continues. I'm not sure why, but as we carried him in to the clinic the other day, Doc gave me a sideways glance as he heard him breath and I said...I know he sounds like crap, but I'm getting used to it. I lied. His ears were good and lungs sounded okay though.

I'm not gonna lie, as genetics in March gets closer, I get more nervous and scared. The aspirating continues and there are times when he's sleeping that he sounds so horrible, that I'm afraid to check on him in the morning because I'm afraid of what I'll find. After the one walking incident, he hasn't walked much more. He continues to pull himself to his feet and takes a few steps around things, but then will sit down. He doesn't want to stand on his legs regularly. He's also sleeping more. He will take 2 naps a day usually totaling between 4 and 6 hours and then be ready for bed at 8:30 and sleep until 7 or 8.

I just feel like there is nothing we can do until genetics. We just sit and wait and watch him struggle at times. His awesome attitude continues. He's so happy and content.

As for the big boys...they are struggling. Not only is their Dad gone continuously every 10 days, but Mom is coming and going. They are seeking attention, and Mom is trying her best to give it to them. We will get through it and am looking forward to summer when I can load them up and take them with me!!