** Ramsey **
Congrats on your pregnancy!!!! That is sooo exciting!!
I wanted to ask you about your little Tucker! My little Isaac was born with hypotonia. He had a muscle biopsy done at 3 weeks which found nothing - so we still don't really have a cause/diagnosis. Does your little guy have a diagnosis??
We are starting with the early intervention therapy and hopefully physical therapy starting at 6 months. Isaac is 3 and a 1/2 months right now, and I am trying to do some exercises on my own with him, but head control feels like its forever away! I just wondered if you could give me some idea when your little man was able to hold his head up, sit up, and crawl. I just never met anyone who has a little guy with this same issue - so anything you can let me know would be great!!!! Its just that no doctors have given us any idea what to expect or what is really going on with Isaac to have caused this! Thanks so much!
Re: ** Ramsey **
Hey there!
Congrats on your new little one! I know how scary it is to get that diagnosis, especially because it feels like there is so little info. Have you taken Isaac to a neurologist yet? That's a great start, as they will be able to tell you if the hypotonia is related to anything else that you need to know about or if it's just one of those fluke kind of things.
Our neurologist explained hypotonia to me like this - if you imagine a bridge being held up by wire cords ... those cords have to be of a certain taughtness. If they are too loose or too tight, it can make the movement of the muscles "off" or more difficult.
I don't think that they know exactly why this happens but it can certainly be overcome. It depends on the severity. When Tucker was disgnosed, our Ped was not at all reassuring or confident that Tucker would be able to walk or play sports. I needed someone who was going to do whatever need be to give him the extra support so I found a new doctor who was. I also went to see a neurologist to have a full work up and a physical therapist that saw him twice a week for almost a full year.
One of the things that I did with Tucker when he was really little and too small to do PT or anything else was I would tie a helium balloon to his ankle and once he realized that he could make it bounce around by moving his legs, he would lie there for up to 30 min kicking his legs and moving that balloon (also how we'd get him to belly laugh!). Just stay in the room with him to make sure that he's safe but it worked wonders for us!
Tucker was able to pull his head up at an early age but had really bad torticollis so althoug he started off being able to pull up, he completely reverted shortly thereafter. He is also a big boy (my DH is 6'5) but was born only 5lb 11 oz so he grew very quickly and his head size growth was also really rapid, which also made it hard for him to lift up once he started growing.
He started commando crawling really early but didn't crawl in the proper position until he was around 10 or 11 months. I wish that I could be exact with you but once I knew that he would be doing things on his own time, I really stopped paying attention to his age and more on what he could do, if that makes sense. It was too frustrating and scary if I paid attention to the timeline of "shoulds" and what other kids were doing when.
Tucker also started pulling himself up late but that was more of a subborness than a physical issue. We could see that he could physically do these things but held back for some reason.
He started walking while holding our hands when he was around 16 months and just around a month or so ago, at 17 months, he started to take steps without holding on. Tucker took his first steps alone in the baby pool at the town pool - the water seemed to help his balance and confidence. Now, at just over 18 months, he will walk without holding on for longer distances, though he is still not completely comfortable walking on his own.
We found that although he could physically do these things quite a while ago, he lacked the confidence to actually do them. I think that the torticollis had a lot to do with it, as his head being to one side threw off his center of balance.
He's so proud of himself now when he does this stuff and I have full confidence that he will be running around in no time! It's really scary though and because of lawsuits and liability, the doctors and pt seemed to be hesitant to really give me definitive answers in the beginning.
We spend a lot of time with climbing toys, did the PT for a year twice a week and we go to My Gym on Saturdays, which has a great assortment of climbing and playing toys that keep him active and engaged. I had wanted to do swimming as well since that's great for muscle development but we didn't get to do that with our schedule.
Hang in there and let me know if there is anything else that I can help with. You can always email me at AlysonRJohnson@aol.com.