Note: I may earn money or products from the companies, products, or links mentioned in this post.
So it’s been awhile since I updated everyone with what’s going on and how Adam is doing and I thought I would take some time to write a post about it. I also soon hope to write a post all about Adam’s Occupational Therapy – what he does there, how he’s doing and how it’s going. Meanwhile here are a few updates for those who have been wondering!
Adam has been doing speech therapy for about 6 months now. We have seen 3 different speech therapist now (all at the same office), the reason for changing that many times are all different. The first therapist was also his feeding therapist and she was trying to combine both feeding and speech together, but it just wasn’t working and I wanted him to have enough time for both. We then switched to Lori who was great, and had some different methods of teaching, but when an opportunity to get all his therapies on one day came up, I took it, but had to switch to another new speech therapist. We are now seeing Amy and hopefully we will stay with her for a long time.
Adam’s speech is still pretty much non-existent. He says,”ma,” “da,” and has started to say, “up” again. He makes the “ba” sound, but that’s about it. Recently he had started babbling more, I hope that means he is getting ready to speak anytime now. He was saying, “no” but like some of the other words he hasn’t said it for months now. He seems to say some words and then lose them and we won’t hear them again for months. It’s happened with all the above words.
His signs however have improved greatly and it has helped us communicate with him better. He signs, “more,” “please,” “Thank you,” “book,” “sorry” and he tries very hard to sign “I love you.” He also folds his hands when we say, “Let’s pray” usually for dinner or before bed. He sometimes gets his signs confused, but I think he just has a hard time putting them all together in his little head! We hope to work on more very soon.
Adam’s behavior has greatly improved with the use of a weighted blanket, highly suggested by several people and his therapist. My friend gave me hers that she was not using anymore for $20. which is very very cheap considering that new ones cost $80. or more. I was so blessed that she passed it on to us. We usually use it at night time while he sleeps, nap time, and sometimes he likes to drag it downstairs with him to use while he’s playing or watching tv.
I wasn’t sure how it was going to work, but soon after I realized he was behaving better and was not sensory-seeking as much. I am so excited to have a more calm and collected child now. Of course he still is a toddler and a little boy so he has his high-energy moments, but it’s not like before. There really is a big change I think.
We went to the GI Specialist again and his blood work came back all good on the liver enzymes. We are so relieved. The doctor did tell us that his blood platelets were low so we had to get more blood work done for that to see what was going on. The doctor called me today with those results and said they are back to normal now. Praise the Lord!
When we saw the GI Specialist for the second time we found out that since Adam was not willing to eat any food for the swallow test that he wanted to try and do it again. I suggested trying to get his feeding therapist to go with us to have the procedure done and he agreed, but when we asked her she did not think she could get him to do much since he barely eats at therapy anyways. The GI Specialist said if we didn’t get the second half of the swallow test done then Adam would have to have an endoscopy.
My husband and I aren’t very happy with the idea as it is a bigger procedure then we were expecting and we really didn’t want to put him through all this, but we both agree that we need to find out what is wrong. They will have to put him out, and the procedure will take 30-45 minutes. They will stick a camera in a tube down his throat to see what’s going on and also the doctor will scrape some tissue in his throat and esophagus and have it tested for several things. We are hoping this might bring some answers for us.
As far as Adam’s regular feeding therapy he is doing some things better during therapy. He now will “kiss” certain foods to his lips or lick them and spit it out. That’s great progress coming from him. The problem we have had as of lately is that Adam just does not get hungry. I have to keep a journal of everything he eats and the other day all he ate all day was some goldfish crackers and 3 oz of baby food – canned green beans, and that wasn’t because we didn’t try either.When you combine very low appetite with very low tolerance of almost any food then it can be very frustrating and scary.
The Marcus Center
Whew! This journey to The Marcus Center has been entirely too crazy and we are not even close to being done yet! We have had so many problems with the referrals and I know the last time I wrote about this I told you it was all set. However, a few weeks ago we got a call saying we were going to have to pay $250. for his evaluation. Long story short, we found out that Tricare had never told us that the doctor Adam needs to see is out-of-network, but the actual Marcus Center is in-network. There is only one doctor that can deal with his feeding problems there and she is the one we need to see
After hours on the phone with Tricare, and the Marcus Center we got them to re-approve a new referral with the right doctor even though she is out-of-network. Praise God, I am not even sure how we did it, but our evaluation is next week. Please pray for us, we will be in Atlanta all day and this is our one chance to try and get him into their program. After this, we hope Tricare will approve treatment, but we are not sure at this time if they will. As a mom, I am willing to fight for my baby and do anything I can to get him help. Your prayers are so coveted and appreciated.