19 months
Aaron weighed 30 pounds 12 ounces at his weight check this week. So he's lost about a half a pound. It is very good news that we have stopped the weight gain snowball. Even if he maintains his current weight, it will still help.
The skim milk seems to be making the biggest difference. Visiting the nutritionist was a complete waste of time. She was young and inexperienced and certainly had never had a patient that young who needed to lose weight. When she started telling me, "Make sure you let him use his own spoon" I thought to myself, "Ok. You're talking a third time mom, here. I don't need you to tell me the basics of feeding a toddler. I don't need you to show me the food pyramid. These things are not the problem! I need you to tell me how to get my baby to lose 5 pounds. He eats healthy foods, a nice variety, and a normal quantity."
Sigh.
We ended agreeing on the elimination of whole milk and trying to shave off small portions of his food servings. (Half a banana instead of a whole - if he asks for more, give him half of a half.) I don't think we'll be retuning for a follow-up. She just didn't have anything to say to me that I didn't already know or couldn't have figured out in a 5-minute Google search.
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Today the pediatric neurologist called me at home to discuss the results of the blood work Aaron had done a few weeks ago. I was so impressed that he called me personally to discuss everything. So far (we're missing one test result) everything has come back normal.
He wants to give Aaron three months to continue to develop and then we'll reassess. For now he doesn't want to do the nerve EMG or muscle biopsy. He said we've ruled muscle disease. He said with muscle diseases, 98% of the time you will see elevated muscle enzymes. Aaron's are all normal. And he doesn't have Rickets, either.
This is all good news. But.
He said the muscle weakness and gross motor delays are most likely just a part of his Beals Syndrome. This means that we have a long road ahead of us to get him walking. He does think he will walk, but he thinks it will take continued PT and OT, ankle supports, knee braces, possibly a walker and who knows what else to assist him in walking. I asked him if he thinks Aaron will eventually walk, run, and jump like any other kid or will he likely need some type of assistance always. He said we'll just have to wait and see at this point. I was really hoping to hear, "Oh, he'll just outgrow this all. Give him a year or so." But that may not happen. But then maybe it will. When he learned to roll around the room at age 13 months he literally went from one day not being able to do it and then the very next day he rolled across the room as if he'd been doing it for months. Something just clicked. Maybe that will happen with the walking too.
In other news about Aaron, he has dropped his morning nap altogether this week. It has been quite sudden. He is content to play all morning with Ada and Asher. Most of the days though I do have to feed him lunch at 11:30 (an hour early) and put him down for his nap by 12:30). But I'd say he's down to 15 or 16 hours of sleep a day, give or take, from his typical 18 or 19 hours.
I'm feeling so discouraged today but I am thankful that he doesn't have an underlying muscle disease. I'm thankful that he is getting stronger.
19.5 months
We met with the pediatric orthopedist a few days ago. We now have prescriptions for ankle braces, knee splints, and wrist/thumb splints.
Aaron isn't faring so well at church lately. He is terrified of the nursery staff. We can just walk past the nursery and he bursts into tears. He curls himself around my arm trying to hide behind my back so nobody can see him. Even when I'm holding him and just chatting with adults - particularly women - if they look him the eye or try to talk to him he will try to hide and begin to cry. With men he seems a little better. I think it is because they aren't usually as animated as the women. They are more mellow and low-key with him. But any woman who approaches him with a high-pitched, friendly, "Hi Aaron!" is greeted with sobs. One man, a good friend of ours, tried to say hi to him in a very gentle way. Aaron wouldn't make eye contact with him, but didn't cry either. He did look terribly depressed and sad though. If I take Aaron into the service while the worship band is still playing, he screams and cries some more. The loud sound is just too much for him. He's the first of our three to show this sensitivity. Asher, we always said, never knew a stranger. He loves everyone. Ada would take you or leave you - no big deal to her either way. But Aaron is sooo sensitive. The good news is that he is getting much, much more comfortable with his PT and OT. He is finally familiar with them enough and intrigued by the toys they bring out to consider them more of a friend than a foe.
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I took Aaron in for his weight check yesterday and he is now down to 30 pounds 7 ounces. This means he lost another 5 ounces in the past month. He also grew 1/4". The doctor said he's now at the 90th percentile on weight. So we're headed in the right direction.
The other day he "knee-walked" a few steps. He's also getting much better at crawling on his hands and knees. He still puts his weight back on his hips and scoots, but he's getting faster at it. I think once he gets his new wrist braces he'll be able to bear more weight on his hands. He started pulling to a stand in the past few days again. Once he learned that skill initially the novelty wore off for a while and we hadn't seem him pull up in several weeks, but finally he is starting to revisit this skill.
He is still intensely passionate about his food. If you make the tiniest move that even hints that you might not give him the food he wants he burst into sobs. The look on his face is utter desperation and devestation. This includes when I turn away from him with a bowl or a spoon intended for him and fill it with food. The act of just turning away from him is more than enough to trigger the flood of tears. He is SO emotional at meal time. And it is constantly swinging from devestation and panic to elation and joy and then back again when the food runs out.
He has officially dropped his morning nap nowadays. We wake him up by 9am or so and then put him down for an afternoon nap around 1pm. He'll still sleep until dinnertime most days, but even so, we've gotten him down to about 15 hours of sleep per day instead of 18.
20 months
I took Aaron in this week to have the molds made for his ankle/leg braces. He did really great through the whole process. The doctor was wonderful. We picked out custom colors for his braces. I picked out a cute blue and green dinosaur pattern for the straps with green foam lining the inside of the brace and blue straps of velcro to hold the brace to his foot. He'll have one for each leg. They will probably be ready in about 3 weeks, maybe less. The brace is a two-part deal. The leg part can detach and the ankle part can be worn alone. When Aaron is standing or praciticing walking, we'll use the leg part. Otherwise, he'll have the ankle part of for most of the day. They must be worn with shoes on. We'll have to go out and buy him some bigger and extra wide shoes to fit the brace.
For the knees, the doctor decided to find him a soft "immobilizer" instead of going to a hard plastic splint. He thinks it will much more comfortable for Aaron (he'll be sleeping in these at night) and that the hard kind might be overkill for the amount of contraction we are dealing with. The knee splints should be ready about the same time as the ankle/leg braces.
Our OT came over and took measurements for Aaron's new wrist/thumb splints. We ordered them in a royal blue color. They will go over his thumbs and his palm and down past his wrist. They'll have aluminum "stays" inside them that make them stiff. The OT isn't sure how well Aaron will tolerate them. They shouldn't be uncomfortable but they will be restrictive. They should be ready in a few weeks. He'll be wearing these for as many hours a day as his skin will tolerate, but especially during his active play time.
The PT is expecting/predicting that Aaron will need the ankle/leg braces for at least an additonal 9 months after he starts walking. The PT and the doctor were both very optimistic that the ankle/leg brace is really going to help him be able to walk. I don't know how long we'll need the knee splints. They will probably get his knees out to full extension very quickly (like in a month or two), but how long we'll have to use them to maintain that stretch, I don't know yet. The OT says we'll be using the wrist splints for probably a year or more.
20.5 months
Aaron started swim lessons last week. Ok, not really swim lessons - he's a bit young for that - but rather physical therapy in a pool. Aquatherapy. He's had two lessons last week and he'll have two more this week.
On Day 1 he loved it. He was in the pool for 45 minutes. After 45 minutes he was pretty tired out and was physically trying to climb out of the pool. He was done! On Day 2 he was very excited to get back into the pool, but this time if the PT moved too far away from me (I was sitting at the edge of the pool) he would begin to cry.
He took a few steps while pushing a little push-toy this weekend. It was so exciting to see! He was able to move the toy forward several feet, but walking isn't quite an accurate word. He would step first with his left foot and plant it. Then he would drag/slide his right foot up to his left foot. Then he'd take another step with his left foot, then slide up the right foot. So it wasn't quite walking, but it is progress!
In the past he has been able to stand alone at the toy and has been able to "walk" behind it with a great deal of assistance from us - including us shuffling his feet for him. So this was a big achievement for him.
I was so excited and happy and stunned to see it happening! Abe had the camera and I was behind Aaron. It was a wonderful moment, except for the fact that certain little 5 yr. old girl was whining in the background about something else. Sigh.
Aaron's orthotics are in and we get to pick them up later this week. We're very hopeful that he'll be up and standing and walking on his own with these very soon. Maybe a little too hopeful, but we'll see.
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Yesterday we got Aaron's new night splint. It is a soft, foam orthotic with velcro attachments. It wraps around his leg from about his groin all the way down to his ankle. On the back, in the inside of it, it has rigid (metal?) supports that make it stiff so Aaron can't bend his leg when wearing it. It keeps his leg at extension and give a gentle, sustained stretch to his hamstring and knee muscles, tendons, and ligaments.
He wears it for several hours during his afternoon nap and all night long (about 13 hours at night). We're trying out one splint out for a week and will (if all goes well) be getting a second one in a couple of weeks so we can stretch both legs at the same time. It is a lot easier to get on than the Dynasplint he wore last fall. It is soft and comfy for him. But when we take it off, he seems to have a moment or two of some pain as he contracts his muscle. I tried to gently massage his hamstring yesterday after his nap and he cried in such a way that made me suspect he was in pain. He did NOT want me to touch his leg. I don't know yet if this is "normal" soreness that anyone would have after such an extended stretch or if it is problematic. It is very temporary though. In less than a minute he seems fine. Hopefully the splint will be effective in stretching his legs out such that when he is standing he can fully extend his legs. Extension is only half the battle though. Strength is the other half. Aaron still has hip, knee and ankle weakness that keeps his knees bent when standing.
The night splint should help with the extension half of the battle. The AFO and SMO leg braces he wearing during the day should help give him the stability he needs to stand. Unfortunately, the AFO and SMO actually make you a little weaker because they do the work for your muscles, but for now they said the benefits of the SMO and AFOs outweigh the disadvantages.
Hopefully in another 2 months we'll be much further along the developmental path... stay tuned!
21 months
Yesterday we took Aaron for his follow-up appointment with our pediatric neurologist. I love this doctor. He is so wonderful. And he gave us really good news to boot.
He said he thinks it is a totally "reasonable" goal to hope that Aaron will be walking by Christmas time (age 24 months) in "short distances" - maybe 3 or 4 feet, with the assistance of just his AFOs and SMOs. Woohoo! We were thrilled to hear his agreement on our PT's expectations.
I also ventured into the "predict the future for me doc" game with him asking him if we could fast forward to when Aaron is 4 or 5 years old, what did he think Aaron would be like? Would he be running and jumping and climbing like any other kid on the playground?
His answer? Yes!
Yay!!!!!! He was quick to follow that with, "I can't say he'll be completely normal, but will he be able to run and jump and climb? Yes."
So maybe Aaron will be a little slower, weaker and less coordinated than other 4 or 5 year olds, but so is Ada and she's doing just fine. This was awesome news to hear. In fact, at this point it's really the best news we could hope for. All the "bad" stuff that can cause muscle weakness has been ruled out. With continued physical therapy and just plain old time D should catch up and be just fine.
Granted we still have a long road ahead. We're all going to have to work real hard to get D walking. But we're on the right track. He's making very good progress just even in the past month. He'll get there. And hopefully he'll amaze us all with a few unassisted steps at Christmas time. How cool would that be!?
He did say that should Aaron stop progressing or actually degress then we will need to do the muscle biopsy. We go back in January for the next follow-up.
The other thing we talked about was Aaron's weight gain. He's up to 33.7 pounds. We've seen some more rapid weight gain since switching him from skim cow's milk to soy milk so we're going to try the "light" soy milk and see if that helps. If it doesn't, we'll switch back to the skim cow's milk for now. We're also going to be more diligent about watching his portion sizes. He eats healthy foods but he eats a lot.
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