Kell and Hypotonia

Wow! It seems like just yesterday I began taking Kell to physical therapy and today is his last day! As you know, he has hypotonia which caused him to be delayed on several milestones including crawling and walking. Well, he’s walking now, and has gone fom the 15th percentile to the 50th! This has been a fairly trying time. Not just the logistics of just getting him to physical therapy, though that has been bad enough. (Anyone who has ever bern to Atlanta knows that getting on Spaghetti Junction is never a good thing.) No, the hardest part is the fear. I did exactly what the pediatrician told me not to do; I googled hypotonia. There’s some scary stuff out there. That is one of the main reasons I’ve blogged about it so much–to counteract some of the scary. The pediatrician said he’d be just fine, but my pediatrician has been in practice for a long time. According to him, pretty much everything is “perfectly normal.” (Seriously, one of these days I’m going to paint one of the kids blue just to get a reaction out of their pediatrician!) Of course, he was right! Kell will always have some issues with muscle tone. He’s not “cured.” He still falls more easily than most kids, and “face plants” with a regularity that’s frightening. (I think the bruise unde his chin is permanent.) I’ve been told that he’ll never be an athlete, but, then again, Michael Phelps has hypotonia so you never know! I plan to start him in swim classes as soon as soccer is over. But seeing him walk in his new Chuck Taylors, and even trying to run is like a miracle to me. And this is a boy whose very life is a miracle. We are truly blessed.

Kell is Walking!!

As you guys know, Kell has hypotonia which has delayed the development of his gross motor skills quite a bit. When we started physical therapy four months ago he had just started the low crawl. He couldn’t lift his torso. He wasn’t pulling up at all. Now he’s walking!!! *insert Snoopy dance* I’m so grateful, both to God and his physical therapist. My little dude isn’t even two yet and has already gone through hypotonia and torticullis. He’s a tough little nut.

More on Hypotonia

Kell had his first appointment with the physical therapist on Monday. She was very impressed with his progress! Seriously he was in a great mood and my little dude put on a clinic! He showed her stuff I didn’t even know he could do! When he was assessed a couple of weeks ago, he couldn’t pull up at all, but on Monday he pulled up easily on this low bench she had, and now he routinely pulls up in his crib! His feet aren’t turned out as much when he stands and he just seems much sturdier. This is so exciting. I told the therapist who assessed him that he was born with torticullis and we did his therapy at home and corrected it within three months. She thought that was awesome and she thought we probably wouldn’t have to go to physical therapy every week as we’re so motivated. With the torticullis I did the head turns and stretches every time I changed his diaper. And I did a lot of baby massage focusing on his neck, back and shoulders, since that was the injured area. I have no idea if that helped, but he certainly loved it!

With the hypotonia I work with him twice a day on the floor for an hour. It’s better than the torticullis therapy because this is more like play and he doesn’t cry unless he gets tired. I try to watch his cues; finger sucking, lying down or just cuddling against me, and call a halt before we reach that point. We don’t have a low bench, but Luke’s tabletop air hockey table is just the right height for him to practice pulling up. The therapist said it’s not a good idea to buy (very expensive) specialized equipment because he’ll be going through these milestones quite rapidly. She also said that he should be walking fairly soon since he’s improving so quickly. I was really worried about that, on the boards for children with hypotonia some of the children didn’t walk until they were nearly two.

Kell had his 12 month visit with his pediatrician yesterday, and the doctor seemed impressed with Kell’s improvement. He also said he knew that with my compulsiveness Kell couldn’t help but get better. I think that was supposed to be a compliment, I think. I’ll have you know I’m not compulsive, neurotic as all hell, but not compulsive. He still says Kell won’t be much of an athlete, but that’s not really what I’m worried about, though that is a concern in this sports mad family. Hypotonia can impact his cognitive development and self-esteem. His brother is such a little jock, and has been nearly from birth. I don’t expect Kell to keep up with him, apparently the Luke is some type of phenom, but I would hate for him to be left out of sports entirely if he has any interest. With any luck he’ll lean more toward the artistic side. He’s more mellow, whereas Luke has always been hyper. It would be great to have a child with an interest in music. Luke loves it passionately, and I want him to have piano lessons, but I can’t imagine him sitting still long enough. The boy doesn’t even want to sit down to eat and even does his homework standing!

The worry is very wearying. Though I know that as a mama it’s my lot in life to worry, sometimes it’s very hard. Then I see these kids at the clinic who are in far worse shape than Kell is in, and I feel like I’m just being ridiculous. Hypotonia can be addressed in physical therapy and I’m beyond blessed to have two fabulous basically healthy boys.


Poor Kell, can’t catch a break. He had torticullis when he was born. No one is sure what causes it, but he might have been positioned poorly in the womb due to my low amniotic fluid. The doctor gave me some exercises to do with him when he was about three months old. We did them five times a day. We also arranged the changing tablen and crib so he’d have to turn his head against the way ut was tilted to see us. We held him in the “Superman hold” to strengthen his neck and upper back as well, and he was okay within a few months. Of course he hated the exercises and would scream so pitifully. The doctor assured me they didn’t hurt, but how would he know? Yeah, I cried a lot.

Now it seems he has some delay in gross motor skills development. He’s nearly a year old and isn’t pulling up or crawling. The doctor diagnosed hypotonia and we had our first physical therapy appointment yesterday. I, of course was a mess because I made the mistake if googling “hypotonia” and scared the all living hell out of myself! Apparently his isn’t that bad, and might even be simple muscle weakness in his core. Baby pilates? Well not quite, but we have series of exercises to do with him. Muscle weakness is better than hypotonia because you can strengthen muscles with exercise. Hypotonia is more a matter of reconditioning the brain and nerves; a far more daunting task. I was primarily concerned about his ability to play sports. Whit and Luke are such athletes I didn’t want Kell to feel left out. The therapist said that didn’t seem to be indicated, but we’ll see how the exercises go. Once his treatment is approved by insurance we’ll go once a week.

Anyway, he woke up one grumpy baby this morning, I don’t think he slept well. Unlike Luke, he’s an unbelievably light sleeper. If you go antwhere near his room he wakes up. After breakfast we started the exercises. Lots of screaming, and this time I know I’m not hurting him, but I’m still a blubbering mess. The exercises didn’t go well, which isn’t surprising i’m not altogether comfortable with them yet, but soon they’ll flow. We’ll try again later. I know we have to do these several times a day, and it has to be done, but damn it’s hard. Anyway, he’s napping now and I think I’ll have cuppa and chill a bit.