I am trying to not be angry while bringing in this new year. Its not quite going the way I had planned though. We found out yesterday that a little boy named Gavin lost his fight with SMA on New Years Eve. He was 5 months old. My heart grieves for the family.
But the more I have sat and thought about it all, the more livid I have become. Logan turns 6 months on Sunday so the assumption is he is a stronger type 1. If Logan wasn’t a stronger type 1, I’m not sure he would be with us right now. If he was weaker and passed within the past 4 weeks, we would have been alone aside from our pediatrician who has been absolutely amazing. We would have already been to STL if the receptionists who made appointments had done what the doctor had asked and got us in ASAP. Instead I got a b*tch who scheduled us for 6 weeks out.
We have pushed to get him sooner and the receptionists became even less helpful. The last few times I have contacted the local pulmonologist, they have told us they want to wait until we see the pulmonologist in STL. Our pediatrician ordered us a pulse ox because they didn’t want to. Now that I sit and type this out, maybe we should have sought out the MDA more in our area but since we had plans to go to STL, we were going to register with MDA STL and then have it moved down here to SW MO. Every one seemed confident in going to STL before making any final decisions.
A part of me is questioning waiting for so long, but on the other hand we have been researching, educating ourselves, and working closely with our pediatrician to keep an eye on Logan. We only have 1 more week though.
This has made me question how many other newly diagnosed families go through this alone. Where no one seems to know anything and you are just waiting. We have had many SMA families reach out to us asking if knew our options available for Logan’s care. Thanks to the great internets we have researched the different options. We are waiting until we meet with specialists to make a final decision though.
We have many families of SMA children reach out to us. From those who took an all natural route, to non invasive, and also some of the more aggressive type 1 parents. I was actually told by one that I was murdering my child if I didn’t go through with the invasive surgeries. I don’t tolerate people like that well. Heaven help those if they had the nerve to say that to my face.
I didn’t write about this yet. Not sure why…maybe I’m trying to forget. Last Friday night Logan’s alarm on his pulse ox went off for his oxygen saturation level going below 85. When I got to the room (2 seconds) it was at 88 but it took several seconds of me moving Logan and rubbing on him for the level to come back up the mid 90’s. He went right back to sleep though and didn’t have another problem. A friend asked what happens if it doesn’t come back up. I told her then we will call 911 and sit, hold him, sing to him, tell him how much we love him.
The hardest thing to think about is Logan always being paralyzed (until we find a cure). We also know there is no guarantee that he will ever speak. I have talked with families whose child has perfect diction and I have talked to families whose child can only speak a couple words and is over 3 years old. There is also no guarantee that if we pushed through with invasive surgeries (or even non invasive techniques) that Logan still wouldn’t pass soon due to getting sick.
There are so many things to weigh. I truly believe there is no right or wrong answer and it is up to the parents to make their choice. That choice should be respected no matter what it may be though.
I feel better getting this all out. Now to continue on my day with my two boys in a better mood! Bolt has been requested to watch with Logan 🙂