AFOs are building confidence

Well, it seems the AFOs (ankle foot orthotics) are building Andy's confidence in standing and playing with toys. Andy is 23 months old, and still not standing independently or walking. I am finding it hard to find the hour a day to sit down and put the AFOs on. I thought that when I got them, I'd want to put them on all the time and be more motivated, but I'm not. However, I think in the few days he's been wearing them, he is becoming more tolerant of them.

We are currently patching Andy's right eye for two hours a day, so I can't help but feel badly when I have to put the AFOs on as well. I don't want to completely irritate him, and when he is sick or touchy it is hard to do either to him. So, I'll have to pray for extra motivation tonight.

Picked up AFOs

We brought home Andy's AFOs, and they look great on him. I was surprised at how hidden they are, you really can't see them at all when they have pants on. We will break them in at first, having him wear them just one hour a day at first. Next week, we may move up to two hours a day. He doesn't mind me putting them on him, so I'm happy about that. He was actually laughing yesterday when I sat him on my lap to put them on.

We worked on sit to stand, and stand to sit, while he had them on, and he played by the couch. He has yet to stand on his own. We are awaiting approval from the insurance company for the gait trainer. When we get it, he will wear them while in the gait trainer. Hopefully, we will have it in time for summer.

I am looking forward to seeing him stand on his own, and feel like the AFOs will soon make it possible for him. The orthotist felt he will be grown out of them in six months, so we'll see if that's the case.

Switching gears

Andy is 23 months old, and still cannot crawl. In January, I was telling his physiatrist that even if I had a physical therapist living with me, I don't feel it would make any difference. He just isn't getting how to crawl. We have to just wait for his brain to be ready.

Lately, I have forgotten to focus on other cognitive skills for Andy to learn, such as counting and alphabet. I am so consumed by the physical stuff, that I need to take a break and reassess what is being missed. I would really like to start focusing more on his language, with flash cards and felt boards. His physical skills will come with time, I need to switch gears and work on cognitive, cognitive, cognitive. It's very important to me to get him more on track. I really feel he is ready to learn, and can take in new information right now.

He is two years old, and isn't a baby any more. I am ready to raise my expectations for him, and push him even harder. I think it will pay off by the fall, when he will be joining the two-year old intervention program.  I am continuing to stay at home with him, so I am ready to get all kinds of therapeutic activities going that he and his sister can do together.

I was also reading in the early intervention stuff, that it is important for Andy to be involved with typical children as well. So, we will be on the look out for things that we can do with the community as well.

Come on Andy! On the tip of his tongue

Andy will be two in May, and I am praying for him every night. Right now, I feel like I'm holding my breath. What are you trying to say Andy? He is trying so hard to talk. I asked him the other day, "do you want more" and did the sign for more, "or are you all done, tell mama" and he slowly let out an "alllllllll dahhhhhh". I showed him my excitement and reinforced the talking, of course. Then today, I asked him, "do you want more, or do you want a drink" and he said "moh wa-wa". Also, a minute after Andy's uncle left and we were all telling him good-bye, I took Andy into his room and he said "byyyyye" real long and drawn out.

Oh, I can't wait to hear him start talking. It is so exciting!!! He also seems to understand more and more of what I am saying to him, which is so great. It is such a great feeling to see him carry out an action that I ask him to do, like can you put this in?

I am trying to look at Andy in a new light, and imagine that he can understand everything I am saying to him. To really believe that he is in there, and just can't express himself fully. I've been reading some of the inspirational stories on babycenter.com and on blogs, and they have been helping me to believe in him. I also don't feel I should lower my expectations, because he needs me to keep pushing him.

Making Andy play on hands and knees more

We are recovering from illness, but I have still managed to give Andy lots of therapeutic time this last week. Our PT visit was quite a flop this week with Andy's horrendous irritability, but we are using her advice on couch cushions. I put a cushion against the wall, so Andy has to play with his toys in four point, instead of just sitting on the ground. He doesn't want to roll off of the couch cushion as fast as he would my rolled up pilates mat (who has time for pilates, yoga, exercise...)so great! He was pissed on the first try, but I figured he will have to get used to it. After just a few days he is doing well with it. He prefers being on his elbows. Can't wait to see him pushing up more on his hands. He did it a little today.

This is all so slow and painful to watch. I am still using my "laughter is the best medicine" cure for sadness and frustration via Netflix. It helps keep the tears at bay. I would highly recommend it to everyone. It beats crying all night long about things you can't change anyway!!!

Hard time today

We have been sick in my house, first Gabby, then Andy and now me. Right now I am feeling my worst, plus Andy is very irritable today, I think from teething. He is crying a lot, and trying to touch a back tooth that hasn't broken through. To make matters worse, my daughter cries almost every time that Andy cries. She says it annoys her, and she is tired of hearing him cry, which is understandable. So, I have both of them crying, and I am really sick, achey, can't breathe, lightheaded, horrible.

By the grace of God, I get both of them to take a nap, and I too get to rest for 40 minutes or so. Then the lady from the Michigan Children's Special Health Care calls me. She tells me that the doctor has reviewed Andy's records, and although the microcephaly and Corpus callosum underdevelopment are there, they just don't cover developmental delays. I responded "Andy isn't simply just a typical kid who is a year behind and will soon catch up, he is severely impaired" and started crying. She explained that they only cover "medical needs", such as if he needed medication for something. They don't cover therapy, because of problems with the brain, which is leading to developmental delays. She says downs syndrome isn't covered, but a heart defect from the downs would be covered. The heart defect is a medical reason for coverage, whereas severe physical and cognitive impairment isn't a medical enough reason.

I am still so angry and am crying about this. When my husband got home, all I could do was cry. He was kind enough to take the kids to grandma's so I could get some rest. This is such a difficult time in my life.  I for the most part enjoy it, but I feel so sad today. I shouldn't have gotten my hopes up about them helping us. Them not wanting to help Andy just breaks my heart. I feel like he deserves so much, and I want him to have the best shot possible at having a normal life.

He's been so frustrated lately, and can't communicate with me. It is so painful to watch him struggling so hard all the time. Amidst all this pain and sorrow, I feel so lucky to have my husband. He is being really good to me and our family. He is working really hard for us, working two jobs and busting his ass, so that I can stay home with Andy.

I continue to pray for Andy's advanced development and happiness. His birthday is approaching, and that is hard as well, because he will be two, but is still so helpless. I really feel like we can still be a happy family, and find ways to make Andy's life enjoyable, but some days are more overwhelming than others I guess.

Andy is putting toys in !!!

Andy is 22 months, and not crawling or walking. Fine motor has been progressing a little, so I have been pushing it a bit more. I have been trying to get Andy to put toys into containers. We've been going at this for months, and I leave it alone, and come back to it all the time. The OT suggested trying different containers, metal bowls, all different things to find what it might be that will finally motivate him. He has a pink piggy bank that he loves, that came with 10 different colorful coins. He likes to close the door on the side of it, where the coins come out. 

I thought why not tip it on its side and ask him to put the coins in (while I hold open the door), because he is preoccupied with closing the door. I asked him to put a coin in, and he did it. To make sure it wasn't a fluke, I asked again, and he did it again. Ten times with all ten coins. When the coins were all in, he picked up a shape sorting toy, a green square and dropped it in. I was so thrilled!

I tried to ask him to drop things into a different container, and he motioned for the pig. Then he reached forward as far as he could, and pulled the pig towards himself. So, okay, we will keep using the pig to put things in. 

I thought I would take it a step further, and I got an empty box and put several shapes into it, along with some colored coins. I asked him, "can Andy take out the star"? And I showed him "this is the star", and placed it in the container. He reached in and tried to grab the star, but dropped it. I asked him again, and he reached in and pulled it out. I then identified the circle to him, and put it in the container with the other shapes. I asked him "can Andy take out the circle", and he reached in and took it out. I was truly amazed. I did it again with a few other shapes and he took the one I asked him to out first, and then emptied out the whole box. It didn't seem like coincidence, it seemed like he was doing what I asked him to do. I am over the moon. 

Fitted for AFOs today

We went to the therapy facility today, and the orthotist met us there at our usual standing appointment time. Andy was a little scared of the orthotist at first, probably because he was wearing scrubs and rubber gloves. I think he thought he was going to get his blood drawn. He sat well for the first cast of his foot and up to the calf, but then started to get restless. We were able to calm him with toys and by singing songs. He sat on the therapists lap, so he could see me, and so I could try to distract him with toys. I picked a cool design for his AFOs, the plastic parts will be blue with fire trucks and helicopters, and they will have yellow foam inside with dark blue velcro straps. Summer is on the way, so he can show them off. They will look very cool.

I am so glad we are finally getting moving on these. He is 22 months old. When I first asked his pediatrician if he would ever have a need for braces, she told me "no, those are for kids with cerebral palsy and muscular dystrophies". I also asked the first therapist about them, and she said we wouldn't even think about them until he is pulling to stand. However, I pushed the issue with his new therapist, and she said absolutely, right away. Andy does a lot of toe clawing with both feet, where he folds his toes all the way under his feet when standing. Plus, he over pronates (rolls his feet inward) big time. He just stands on the inside of his feet, most of the time.

We have also made an appointment to see a developmental pediatrician for the first time. because I feel she will be way more experienced with special needs children. Our physiatrist is great too, because all she sees all day are kids with special needs. I feel like we finally have a great team pulled together for Andy.

Feeling a little better about Andy this morning

I found this blog post late last night, and it gave me hope again. It is about an autistic woman who didn't walk until 2, crawled between 3-4, had an IQ of 70, but went on to get advanced degrees.

http://blog.donnawilliams.net/2007/05/27/hypotonia-and-the-presumption-of-mental-retardation/

It is so hard when you really don't know what is going on in their little heads. I don't even think a crystal ball would help, because I wouldn't want to know the future if it isn't good. I am going to try and search for more success stories, to keep me motivated. I really need it right now.

Running out of steam and more grief about retardation

We just had a bad weekend. My daughter was very sick with high fevers for three days. So now we are exhausted. Therapy has gone by the wayside, and I am just so sad again. Mental retardation is heavy on my mind again. Andy is not learning how to sit up or crawl, and he is almost two. Experts with 30 years experience are saying no sitting up, and continued infant like behaviors are early signs of mental retardation. I don't want to put my head in the sand about this, and pretend he isn't showing all the signs. If I bring it up to family members, they still feel it won't be the case for him. But my gut feeling tells me it is the case. His neurologist feels the same. It just makes me cry,but then I just want to keep moving and not let myself think about it. I try to believe that he can still lead a somewhat normal life, but I don't want to have my head in the clouds. We are just torn to pieces about this.