Just a little update on Luke. We have a power chair at our house to demo for a while. Its great to see Luke move around, but there just isn't much room so it also makes us hope for our house to sell soon. Luke mostly goes in circles because its all so new to him. Its also a little scary to him to be moving on his own since he never has. Its going to take patience and practice.
We found out at Luke's last dr. apt that he has dislocated hips. This is common with SMA and would take surgery to fix, but its not necessary to fix unless he has pain. He doesn't show any signs of pain thank goodness. It made me upset to find that out of course, but its just part of SMA. The muscles are weak and aren't keeping the hips in place because he isn't weight bearing.
We have decided not to make the trip to the specialist in Utah that we went to in January. We have great doctors here and don't see the point of spending the money when its more for their research.
We had been considering getting Luke a feeding tube. Lots of kids with SMA eventually need one because eating can take up so much energy and some kids have trouble with the muscles used for swallowing. Luke has done pretty well with eating, but their are times when its hard to get him to eat and we wonder if he's getting enough. Part of it is probably just his age, he's getting picky like all kids. Some families get one proactively so in case they get sick they will be able to get nutrition in them to help them get better. Its a hard decision, but right now we feel like he is doing well enough and we want to wait. We are praying that God will continue to give us wisdom in this.
Luke is doing well, but I think I was hoping we would start to see him getting stronger and being able to sit on his own. We are no where near that. I've noticed that his head falls forward alot more and he can't get it back up without help. The thing is he is getting bigger and its harder for him to do some things that he could before. Its work for him to get food to his mouth. But he does it. The littlest things are so hard for him, but he is still such a sweet happy boy. He can do other things though. He talks and talks and talks. We can't understand it yet, but love to hear it. And now he can go on bike rides with Dad in his new bike trailer.
Jeremy took Luke on an 8 mile bike ride and Luke loved it.
My sister Anna got married and Livi was a flower girl. She did a great job!
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| Livi had a blast dancing at the wedding |
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| We planted our fall garden- lettuce, basil, and cucumbers here. |
We are still praying for healing for Luke and know that God does miracles. I don't understand all of this and why its happening, but I still want to worship God and trust in his goodness. Through all of this I have realized that God really is my rock. My refuge and hope. Thank you all for reading and praying for us.
He alone is my rock and my salvation; he is my fortress, I will not be shaken. Ps. 62:6
