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| Declan being sick |
So most of the readers here are probably wondering why I am writing about a cold. I mean, for a normal healthy child/person a cold is nothing, it's just a pain in the butt sickness that comes every year and a few tissue boxes later you are back to normal. However, imagine getting a cold when you already have a hard time breathing, and you are too weak to fight the cold off. This world loses a lot of SMA babies to pneumonia that all started with a cold. We tried so hard to keep Declan healthy as long as possible. Then, School started and with that of course, the colds came home too. It hit everyone in the family. Declan made it just under 7 months before he got sick. I think we did rather well, or we were just lucky.
Out of all of us Declan recovered the quickest, which is great to my little ears. We were worried about how a cold would effect him. It took about a week and a half for him to get back to his feeding schedule. He still has a cough which I had the doctor look at just to rule out pneumonia. We are still keeping a close eye on him, but it looks like he is in the clear.
The doctor feels that with the cold, and RSV season coming, it would be a good idea for my hubby and I to get trained with a cough assist machine. This is how they explained it to me. It pushes one big breath in and then pulls that big breath out. I know how to break up the yucky stuff which we do from time to time, but now it looks like we will get a machine to help us out. I can imagine what this is going to do and I hope I don't lose my lunch in the process. The things we mothers do for our children!
I honestly can't imagine this world without Declan so if I have to do some dirty jobs to keep him here then I will. He gives us so much joy, and he is the cutest baby (maybe I'm bias...) His expressions are great and I don't know if it is because I am older or what but I have a lot of patience ..... well when it comes to Declan.... I am sure my hubby feels the same, and D&K just love him. Declan's face just lights up when they come home from school.
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| Declan with Mommy. |
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| Declan at his 2nd sleep study |
We also had our second sleep study done with Declan. He didn't like getting hooked up to all those wires again but he did well. We received the report and he is doing really well, better than last time, and the doctor believes he doesn't need a BiPap.
We have a scheduled doctors appointment with Declan's neuro docs and I am hoping they have an update on where we stand with diagnoses or give us something we can work with. We continue with physical therapy and occupational therapy and it is helping. Declan's head is becoming stronger and his trunk (chest and tummy) are becoming stronger too. We still have a lot of work a head of us but we are seeing results.
Keep sending good thoughts our way and many well wishes. We hope we can make it through this winter without getting sick again. Thanks to all who read our blog and I hope anyone needing information about this disease can find help and I hope I provided you with enough info to get started. May we find a cure soon!
