Goal
In support of
Elijah Moulin
View Support Registry
Elijah Moulin
Good morning!
I have struggled with setting a goal for the amount of money we need to raise for Elijah because it all feels unknown. Sitting down and thinking about it, plus preparing for this next trip to Texas, I felt it was time to figure it out. There are so many unknowns about if we will be paying out of pocket for a potential surgery but I am not thinking about that right now and can update if that comes. For now, I am focusing on what we know. The last trip to Texas, driving, was $1500 in just the medical expenses (labs and the doctors appointment). This time the transportation was more expensive because we are flying and avoiding a hotel stay. Averaging it all together and how often we have been going, setting the goal of $20,000 made sense. I pray that God will open the doors to ensure that we are able to keep paying for these expenses for Elijah because of how important it is.
Elijah has really been struggling with his sleep, which means I don't get sleep either. Tomorrow we will meet with his sleep doctor and discuss options. Medicine does not seem to be the answer and I am honestly wondering if we need to try his CPAP/BiPAP again. He didn't use to have any issues sleeping through the night when he was using this. He has been off of it for a while because it seemed to be increasing seizure activity when we transitioned to CPAP from BiPAP. However, it still seems to be happening with just the nasal cannula so I feel we have a ways to go to figure all of this out.
The weather here in Colorado is finally warming up some so we are taking advantage of it when we can and getting Elijah outside, which is his favorite place. This past weekend, we participated in a walk for LGS awareness. The morning started off really cold but warmed up and we had a great time being around other families like ours. Elijah got to see a lot of his friends! I have also recently joined the board for the MCT8 foundation and am so excited to be able to help plan and raise awareness for our kiddos! Yesterday, during PT, Elijah's therapist observed and stated "you are moving your arms so much today bud!". I have been saying he has had so much more movement lately so it was nice that someone else saw it! Then we did some OT and he crushed it! He loves the vibration "shaky" plate so much. I wish we could have the nice one from NAPA and maybe one day we can. For now, the cheap one from Amazon makes him happy. He did so much work on head control and core strength. I am so proud of him. We have these little duck sound noise makers and it was the exact motivation he needed yesterday to pick up his head when he was on all fours! He crushed it!
Happy May Y'all! Have a great day!
I have struggled with setting a goal for the amount of money we need to raise for Elijah because it all feels unknown. Sitting down and thinking about it, plus preparing for this next trip to Texas, I felt it was time to figure it out. There are so many unknowns about if we will be paying out of pocket for a potential surgery but I am not thinking about that right now and can update if that comes. For now, I am focusing on what we know. The last trip to Texas, driving, was $1500 in just the medical expenses (labs and the doctors appointment). This time the transportation was more expensive because we are flying and avoiding a hotel stay. Averaging it all together and how often we have been going, setting the goal of $20,000 made sense. I pray that God will open the doors to ensure that we are able to keep paying for these expenses for Elijah because of how important it is.
Elijah has really been struggling with his sleep, which means I don't get sleep either. Tomorrow we will meet with his sleep doctor and discuss options. Medicine does not seem to be the answer and I am honestly wondering if we need to try his CPAP/BiPAP again. He didn't use to have any issues sleeping through the night when he was using this. He has been off of it for a while because it seemed to be increasing seizure activity when we transitioned to CPAP from BiPAP. However, it still seems to be happening with just the nasal cannula so I feel we have a ways to go to figure all of this out.
The weather here in Colorado is finally warming up some so we are taking advantage of it when we can and getting Elijah outside, which is his favorite place. This past weekend, we participated in a walk for LGS awareness. The morning started off really cold but warmed up and we had a great time being around other families like ours. Elijah got to see a lot of his friends! I have also recently joined the board for the MCT8 foundation and am so excited to be able to help plan and raise awareness for our kiddos! Yesterday, during PT, Elijah's therapist observed and stated "you are moving your arms so much today bud!". I have been saying he has had so much more movement lately so it was nice that someone else saw it! Then we did some OT and he crushed it! He loves the vibration "shaky" plate so much. I wish we could have the nice one from NAPA and maybe one day we can. For now, the cheap one from Amazon makes him happy. He did so much work on head control and core strength. I am so proud of him. We have these little duck sound noise makers and it was the exact motivation he needed yesterday to pick up his head when he was on all fours! He crushed it!
Happy May Y'all! Have a great day!
Comments