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.

State help is on the way

After following up with the state, I found out that even though I was told Andy wasn't approved to be in the program, he qualifies to have follow-up visits and tests with specialists covered by them. His future equipment may also be covered if I take the correct steps to get it. He isn't considered eligible with GDD and hypotonia, but the brain abnormalities may get him into the program. We are still waiting to find out. If he gets in, the state will pick up all therapy copays, which would help out a lot. All my phone calls with Andy screaming in the background seemed to pay off.

Went to Lekotek today to borrow toys

Lekotek is an organization that provides resources for kids with special needs. We found out about them through our son's early intervention program/special school. We were told to go there to look at the toys and therapy equipment they have to loan to families. I made an appointment, and we went into a playroom to see what Andy might like to play with. Andy wasn't too thrilled with the first few rounds of toys brought into the room. Things were too loud, or just weren't his thing, so I asked the woman helping us "can I come check out the toy room with you"? It seemed to be the best thing.

My daughter Gabby looked around as well, because the leader told me the siblings get to borrow a toy as well, so they don't feel left out. Good thing, she would have been upset for sure. I found a different kind of toy table that Andy might like, and a keyboard that Andy could use sitting on a chair, or standing up. Some of the things in the room I was thinking of buying in the future, so I thought it would be nice to try them out first.

I didn't find too much at first glance, so she let me look at more toys and therapy wedges in the basement. I picked out a climbing wedge, a cube chair, a shape sorter, and saw several large items that I would like to borrow for the summer. Such as the cozy coupe, or large outdoor toys which would require my husband to bring a truck up there. I've seen the cozy coupes at garage sales, but haven't bought one yet, because I don't know how Andy would do with it. So, we will have to borrow it when the weather gets warmer, as a try it before we buy it.

It appears that there are Lekotek organizations nationally, their website is www.lekotek.org. There is also a nice link on this website for the "Toys R Us toy guide for differently-abled kids". I really like this guide as it explains toys that are good for fine motor, gross motor, thinking, language, etc.

We will be going back in once a month to borrow six items for the month. I was also told if we aren't ready to bring something back, we can hang onto it for longer, and just borrow less next time.

Andy is holding his sippy cup and drinking

Finally, at almost 22 months, Andy can hold his cup on his own. He can also bring the straw up to his mouth and takes a drink. I was so proud of him, and still am. I was worried it was just going to be a fluke, and I would wake up to find him, so helpless again. But he us doing it everytime I hand him the cup. Thank God!

This accomplishment is giving me the steam to tackle crawling. I am keeping him in four point more frequently. We are on the roll more. He doesn't respond well to a blanket or towel around his waist or under his arms. He puts his head right down and goes flat. But, I sense an upswing occurring, and I think he will get it soon. He seems more tolerant of this position lately.

I continue to pray. Working with him is so exhausting. He is nearly 30 pounds and almost three feet tall. I get so winded and tired. He is strong and resistant, which tires me quickly. Plus, my daughter is off to the side begging me to play with her. And the house is a disaster.

I am way overdue for a trip to the salon, but at least I let myself go to lunch with a friend yesterday. Ahhh, time without the kids is so refreshing!!!

Update: May 2011
Andy didn't continue to maintain this skill. He looks to me to get his cup for him, and then he drinks from the straw. I work hard everyday to get him to pick up the cup again. We use a two handled cup with a straw.

Borderline hypothyroidism revisited

Andy saw a second opinion endocrinologist as a result of a TSH level slightly out of range. This keeps happening, so I wanted to cover all bases and make sure he shouldn't be on medication for this. The doctor feels that for now, we don't need to medicate, and we can check again soon after he turns two. I am still awaiting the results of an "ultra sensitive" total thyroxine test, which will take three weeks. Even still though, the doctor feels we can probably put these worries to bed. I started to feel bad, because I couldn't help but wonder if he should have been on medication this whole time. However, she doesn't feel she would have medicated him either, so now I feel better.

Don't want to think about a wheelchair yet...

Just as I am trying not to worry about the future, I constantly have doctors, teachers and therapists reminding me that Andy may need a wheelchair for preschool. Of course, I understand the possibility.  If he is NOT walking a year and a half from now, yes, he will need something to get around with. We have a gait trainer on the way, and he is standing, beautifully (in my opinion). No buckling, his legs aren't weak, they are strong.

I know people are trying to prepare me for the future, and foretell me of what may lie ahead. But how can I stay positive with these constant reminders? I have told people that I don't want to talk about this now, because it is way too far ahead ( a year and a half away). I really don't feel I am being over sensitive, I just feel it is far too soon for this discussion.

Deciding not to look too far into the future

I think I have finally been able to keep myself in the moment. Andy is 21 months old. I have just been living in the moment for the past few weeks and I have been so much happier. I don't let myself worry about what things will be like when Andy is an adult, or teenager, or even elementary school. Even after my second neurologist told me "we may be looking at a picture of mental retardation", I grieved it, and am over it. I worried about it for about a week, cried every day and night, and I am over it.

I am not going to worry about this until someone evaluates his IQ and tells me it is extremely low. Even then, he may be smart in other ways, and the IQ test may not truly demonstrate his abilities. I am done worrying about this possibility.

Andy continues to make gains, but still is not crawling or standing. He is almost able to get into sitting. I think his confidence needs a boost. At times he will do it, on my bed, or with a pillow behind him. Today he sat up on his own, while laying on his back over my leg. When I saw it happen, we got to work on practice, practice, practice. Until he was worn out , and is now napping.

He still hates tummy time, and hates me holding him in four point/crawling position. I always get SO frustrated, and can't help but feel, NEVER again. Never will I put myself through this again. I'd have to be crazy. Or it would have to be several years from now, and I'd have to be convinced that Andy is done with his struggles.

After the sit up practice, I stood him up facing his crib, and he did a great job holding onto the slats. After he fell three times onto my lap, he started tightening his grip on the bars, and actually seemed to understand that he could keep himself from falling. He has always been oblivious to trying to stop his fall. Protective actions just aren't a strong suit of his, but they are slowly coming around.

I am happy to see his pincer grasp really coming around, more pointing, slight response to his name, continued signing of "more" and "eat", and him letting me put his hands on his sippy cup or utensils. And he has been much more happy lately. Everyone is noticing it, and saying that they see a difference in him. He is starting to enjoy things more, and laughs and smiles to show us how he feels.

So, I am going to continue to try to stick to not looking much past the next couple weeks ahead. Enjoying the kids, and loving my family for who we are.

Appointment overload

I am already starting to think about this summer and fall, and making it to all the appointments we usually have in a given week. Summer will be harder, because my daughter won't be in school and will have to come along to everything. She is only three, and can only sit still for so long. She gets bored with coloring books and crayons after about fifteen minutes.

So, for this fall, I may have to look into having my daughter be in preschool for more days, and for longer periods of time. This will allow me and Andy to get more appointments fulfilled while she is at school. We are already double stacking appointments and I'm not sure that triple stacking will work when Andy starts speech. Usually after the PT, then OT he is worn out and ready for his nap. Plus, siblings aren't allowed in the room for the speech therapy. I don't want to have to sit in the waiting room for these appointments, because I want to get tips from what the speech therapist will be doing.

A large part of the therapies are the take home message that the parents get, so that you can continue the work during the week. The therapy is only one hour a week, sometimes two and it doesn't add up to much over a whole week. So, it is essential that I pick up on what is being taught and try to repeat it at home as much as I can. So, I really don't want to be out in the waiting room.

It can also be really devastating when one of us is sick, because we have lots of appointments to cancel/school to miss. Then I can't help thinking about everything we've had to miss due to being sick.

As my daughter gets older, she should be able to better entertain herself anyway. We seemed to be balanced out pretty well right now with appointments, but it is a lot when you step back and look at all we have scheduled.

Gait trainer

Andy is 21 months, and still not crawling or walking. I was curious to see how Andy would do in a gait trainer, so I asked his PT about it. We both know he is not even pulling to stand yet, and still can't get into positions on his own, so walking is probably far off. However, he is liking standing against the couch to play with toys, and bouncing on rodey horse type toys and things like that. So, she brought it out and he really liked it. He was so smiley and happy, it was really great to see him so happy for so long. The PT and OT were there, and both said they had never seen him so happy. I think he liked standing independent of me, and felt safe and confident in the trainer/kid walk.  He wasn't walking on his own in it, but as she was pushing him, he was taking "reciprocal steps". The PT said she was sold on getting him one for our house, so the wheels are in motion with the insurance company. He has to officially be evaluated by the medical equipment rep, and they can't do this until next week. It should only take 10 minutes though. Equipment rental places near me say that this is not something they rent out, they are for purchase only because they are a special order. So, I still have to check with his school to see if they have any that could be borrowed, but I think they only have one.

He seemed to feel a new found freedom, I could see it on his face. I think he was most happy to be playing with his sister in an upright way. He loves her so much, they are two years apart. The PT mentioned that we could go for walks around the block, and all kinds of new opportunities will arise. She said we may start to see him come out of his shell more too, with the new movement.

Hypothyroid issues???

A few times Andy has had borderline hypothyroid readings when his bloodwork is done. T3 and T4 are always within the normal range. However, we have found the TSH levels to be slightly high, by two or three points. The top of the normal range TSH may be 6 and he shows an 8, the highest was a 10, so we aren't talking about anything in the 30s or 40s here. Just kind of "borderline" hypothyroidism maybe. I have an appointment to see our second endocrinologist for the first time next Friday. She is at a freestanding practice, not in a hospital. The local children's hospital cannot see him until June, (it is March 2), and this doctor has a spot next Friday, so we'll take it!  A pediatrician that came to talk to me during Andy's EEG suggested that we may want to give some thyroid medication a try for a while. If it is too much for him, and makes him hyperthyroid, then we would wean him off of it. It is something I will bring up with the new endocrinologist. Of course, it would be great to find something that might help his development along, but I don't want to set my hopes on anything.

Speech therapy

We haven't started speech therapy yet, but I think I am going to get the evaluation rolling soon. The school early intervention program told me they won't start speech therapy until age three. Another speech therapist with 20 years experience told me, she has never started a kid before they reach age two, because their word and sound base isn't developed enough to start working with. So, I am confused. I asked the pediatrician that came in to talk to us during my sons 24 hour EEG, and he feels the sooner the better for speech therapy to begin. He will be two in three months, so I feel it couldn't hurt to just start the evaluation and see what the therapist at his current facility thinks. It is just hard to add more appointments to our already full schedule.

Andy currently has three words he uses often, mama, dada and up. And then there are about six other words that we hear maybe once a week, which is awesome for me. I am going to try to do flash cards more often as well, because I'm sure every bit will help.