We have an appointment with the Specialist at Children's on February 15th that we made back in September so I'm guessing we will just get the results then. (hopefully they will be back by then and we won't have to go in again later)
As far as Caleb's progress- He was getting stronger back in November, and then around Thanksgiving (ish) he started to go down. He seemed to get weaker and Christmas was hard on him. We traveled to Arkansas for Thanksgiving and then Michigan, Illinois, and Arkansas for Christmas. (all driving!!) Traveling is hard on him too. He was also teething, his top eye teeth are finally coming through! And teething is really hard on him. I think it was one of the things that made last summer so hard for him. So I don't know if he was getting weaker and the teething made it harder or what. Since all of this is new for us we don't know what his normal will be. It's very possible that his energy will come and go in cycles. Time will tell I guess. We are still waiting on 1 of his eye teeth. He wakes up multiple times a night crying and in pain. It subsides pretty quickly but I hurt for him. We don't really know why he is crying honestly. I hope it's just teething, but if it isn't I pray for the day when he can tell us what is hurting. Anyway he seems to be going back up now. I've noticed his energy increasing and his PT has also noticed his balance being better. Yea!!
Caleb also started Occupational Therapy in December. She comes to the house and works on fine motor skills and hand strength. He seems to be okay in this area but anything to keep his brain active and stimulated has to be good for him. One thing I don't think I have mentioned here is that we had an appointment at Scottish Rite the day before his muscle biopsy and we got to see his MRI and ask questions. The "dead" spots were small and the Doctor said they are in the areas of his brain that affect movement. (which seems to be his biggest struggle) So it was helpful to hear that information. We didn't really know what to ask when we were first presented with the news. As time goes on our list of questions get longer as we encounter more things and have had time to process the initial feelings surrounding the diagnoses.
Moving forward- The same people that do his therapy have a nutritionist that is going to start coming out probably once a month to help and monitor. We are also going to see the speech therapist to help work on his mouth muscles. He doesn't seem to have a problem with speech but she can help him learn how to suck through a straw and work on chewing. I don't think that will be weekly like the other 2 therapists but we will see.
I shared in my November post about being scared to be hopeful because,
I have read that with this disease there can be times where they get better and times when they get worse. I'm standing in faith that he will not get worse but only continue to get better. But sometimes I am scared to hope that he will continue to improve. I am scared to tell people that he is doing so well because what if tomorrow he isn't?
I think part of the reason I haven't blogged lately (besides being gone and crazy busy!) is that I didn't want to say he wasn't doing well. It's hard trying to sort through it all. Something that happened recently is the nursery at church noticed he was doing better and mentioned it. They were really excited. My first thought was, "yea well it won't last." AGH! That's horrible! and it's exactly what went through my mind. Now before you go telling me to cast down those thoughts, which I did, but let me finish :) I thought about it and wondered why I can't be happy too. And then I realized that I can be grateful for the "up" times. What if he didn't have those and everything was a "down/weak" time? So as much as the "down" times hurt my heart I will be grateful for the improvements and for the "up" times.
One last thing that happened recently was while playing in the playground at Chick-fil-a, an older kid came up to Caleb and Jason and made a really mean comment about Caleb, to his face. (his eyes roll around sometimes when he is tired and he loses head control) Jason came out really mad! And the more I thought about it, the more mad I got, and the more sad. I don't want my baby to have to deal with mean people. He doesn't understand what people are saying, but he soon will. And my heart hurts for him already. He won't be "normal" and it really kills me. It makes me beg God to heal him even more.
Thank you to each and every one of you that have prayed for my sweet boy. Thank you for praying for our family and for Jason and me. We need God's strength and provision. We need His guidance and love. Thank you also to each and every one of you who have given us money for Caleb's medical bills. We are overwhelmed by your generosity and love. Thank you Alyssa for making the bracelets to raise money and awareness. Thank you Mom for watching the kids during the countless Dr. appointments over the last months. We love you all!
I really am going to try and post Jordyn's birth story and something not so serious here soon, but I'm not making any promises!! :)