Improvements!

It's been awhile since I've updated and there have been many improvements in Mr. Robbie! The most exciting is that he is doing so well in physical therapy that he is moving to only once a month. Yay!!!!! He now only needs his helmet while at the playground to give him more freedom, at home he is good. Speech/Feeding therapy is going slower and he still needs it weekly. We are currently working on his learning to chew. He is making good progress when Chet works with him but is very resistant on his own or with me. He is now getting some real foods mixed in with his purees! This will help him with new/more textures, new flavors and is a stepping stone away from the purees. Please be praying that his chewing reflexes kick in and he overcomes his fear of swallowing. Hopefully he will be well on his way to eating more normally by the time little brother arrives!

The Helmet

Yay! Robbie is learning to walk!!!! This is beyond exciting for us but also a little nerve wracking. Due to his hypotonia he is going to need to be wearing a helmet for awhile. I asked his physical therapist to explain for me the need for this. Here is what she has to say...

Hello Everyone who is concerned about Robbie's helmet,

Robbie is one of my fastest improving kiddos! I didn't expect him to start taking steps so quickly. He also started to crawl before I expected, pulled to stand earlier than anticipated, and is now starting to take steps on his own when ever he gets inspired to walk. Unfortunately, he has started to take steps before he developed good balance in standing. He doesn't yet have protective extension responses that are fast enough for him to catch himself with his arms if he starts to fall forward or backward. He also compensates for his immature balance by locking his knees which helps to prevent his body from using equilibrium responses (compensations in movement) to maintain his balance.

For example, if Robbie is pushed forward from standing, you will see his arms come out after his head has hit the ground. If you push him backwards, even from sitting, his arms often won't come out to protect him at all.

I recommend that Robbie wear his helmet for all of the time that he is awake and mobile, to prevent a head injury. Because Robbie is so interested in exploring his environment, I'm afraid that he might crawl over to a surface, pull to stand and then let go to take a few steps to reach a toy, without first getting his balance or recognizing the danger of the coffee table corner right next to him.

Amanda does a wonderful job taking care of Robbie. He has just gotten so fast with his movements that it seems an awful lot to expect her to be within arm's reach of him all day long. The helmet is just extra insurance that he will not hurt himself before he develops good standing balance including protective extension responses and equilibrium reactions. I do not expect him to have to wear the helmet forever, but I can't say how long he will need it. I have learned not to predict when Robbie is going to learn to do something, he has shown me it happens on his own personal schedule ;)

Kris Fought
Pediatric Physical Therapist
Florida Hospital Celebration

Good News

The GI appointment went really well. When weighed without clothes Robbie is still in the 3rd percentile. Dr Bornstein is unconcerned about that, according to him people with hypotonia are always low weight because the low muscle tone. Apparently Robbie has a good amount of fat just not the weight that comes from muscle. After lots of questions and checking him over we saw the dietitian. Apparently his diet is precisely what it should be excepting the formula. Robbie will now be on Pediasure or an equivalent, we will have to experiment and see what he likes. That will double the calories in his liquids. So . . . all is going really well! Hopefully this will add a little more to his weight. :)

Honey Bear

Yesterday was physical and speech therapy. Of course they were blown away in pt when I set him down and he took off but speech therapy wasn't so grand. We spent the ENTIRE time trying different cups and drinking systems. The problem....none work with the thickened fluid. You would think since thickener is made (and his is the thinnest of the types) that they would also make cups to work with them. No. His speech therapist, being the wonderful woman she is, had previously devised the drinking system you see to the side for kids who won't drink and need to learn to suck in their fluids. You squeeze the bears stomach and the fluid comes out. Fortunately it worked with the thick liquid. We spent the remaining 10 minutes trying to get him to put it in his mouth without much success. She sent it home with me with instructions to get him to put it in his mouth and practice closing his lips around it. He pretty much refused it at lunch and so I tried again at dinner. After he refused it for a bit I decided to turn it around and let him see the bear. He loved it. He played with it's face for a bit then put the straw in his mouth! That was it. That was all he needed. Today he has been great with it. Let's hope that he continues doing great! Now he just needs to learn to keep his lips pressed around it, swallow with it in his mouth and suck it up on his own.

Genetic test tomorrow.

Fun Stuff and a Diagnosis

Robbie has learned to raise his hands and go "ta-da!" Though it often is ah-da. He learned this by copying Ms Kris, his PT :)

Another new thing in his repertoire of skills is blowing kisses. This doesn't quite look like blowing kisses but it is what he is trying to copy. Usually his finger ends up in his mouth and he ends up blowing spit :)

The most amazing new thing is crawling!!! Yay!!! So far it looks mechanical and a bit funny but it is becoming smoother and better by the day. I'm so full of happiness I get choked up every time I think of it.

Robbie's neurologist has given us a diagnosis. It is not final because we haven't had the genetic test done. He has been diagnosed with hypotonia and aspiration. From everything we've found through his testing so far the hypotonia should be the benign kind that simply is and is not progressive. There is no treatment but various therapies help them catch up and work out any issues it causes. Please keep this in your prayers as we look to the genetic test next.

Let's Throw Another Specialist on the Bar-B

er, I mean list. Yes, another specialist. Apparently Robbie has been diagnosed as "Failure to Thrive". So we are now being sent to a GI specialist. I think what he will do for us is help plan a diet high in nutrition and calories that Robbie can eat considering his feeding problems. Robbie has been eating more and better lately anyways so we think he is already on the up swing but if this will help him along faster then we are all for it. We have an appoinment in two weeks.

Swallow Study and More

Robbie had a very good Christmas! He had a blast visiting family and playing with his new toys. The following day we took off for Texas. He did marvelous on the trip in spite of having an upper respiratory infection. His 7th tooth came in on New Years Eve! We drove straight through on our way back and he is still recouping from that.

On to the Swallow Study. Other than waiting 2 1/2 hours for it to start, all went well. He swallowed the stage 2 and 3 food well but wouldn't have anything to do with the solids. They said that he appears to have oral motor problems that the speech therapist will help him correct. When it came to the liquids he aspirated immediately. That means the fluid went down his air way. That is dangerous and can cause lots of problems. This could be the reason why he hates drinking and dislikes eating. To fix it for now we have to thicken all his fluids with a special gel. At this point I'm not sure how this will really be corrected, if it will go away on its own or if therapy will help. I will ask the speech therapist. They told us that by thickening the fluids and stopping the aspiration that we should see an overall improvement in his development! He has his first Speech Therapy this week. I'll let you know how it goes :)