The Amazing Owen
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Go Owen!! It is so fun to here about all the things that Owen is doing. He is progressing so nicely!

I guess it's good and bad news about his GI tract. Good that there is no diagnosis; bad that there is nothing to blame it on. We have reflux issues too, but with some digestive enzymes and a probiotic it really helps control the excess acid and doesn't hurt when he does reflux. Here's to hoping that the Mirilax will help!
Comment By Jill At 5/1/2009 11:13 PM
Great news! It's wonderful to hear how Owen continues to make great strides.
Elizabeth is doing well too. She is scooting all over the place again and army crawling. I can't wait until she can pull up on stuff again. Maybe she needs an 'O ladder'!!
Thanks for updating us and maybe we will see you sometime this summer.
Maria Nozzi
Comment By Maria Nozzi At 5/2/2009 8:35 AM
Owen is the little man!! The story about him walking across the room holding onto the scooter handles is incredible!! He is a go-getter!!

When you mentioned Cleveland Clinic, my sensors certainly perked up....EWWW OHIO!! I certainly don't hope for Owen to need more testing, but if he does it would be awesome to be near each other.
Comment By Kristen At 5/2/2009 10:36 AM
He can walk with the little bike! WOW! He is doing so well :)

And I am really impressed by the progress he is making with eating. :)
Comment By Lisa At 5/5/2009 1:44 AM

If things don't work out I would definitely recomend at least contacting Cleveland and talking to them. I can tell you from my own personal experience that it is a long ride butif they tell you they can do something or fix something they do it and they are the best. I am happy to see owen making all kinds of progress. Leisa LeFew
Comment By leisa lefew At 5/5/2009 11:31 AM
Testing the new captcha thingy.
Comment By Michelle At 5/12/2009 9:06 PM

Original Entry:
Catching Up
It has been a while since my last update - we have been very busy lately.  Therefore we have a few things to catch up on.

Firstly, we got back the results from the biopsies that were done during all of the GI tests that I posted about a few weeks ago. All of the biopsies were normal.  There are no inflammations due to damage, no Hirschsprung's, all of the nerve cells are where they belong and there was no inflammation due to allergies.  So why does he have such bad constipation and reflux?  No clue.

So we took him down to Duke to let them have a go at figuring it out.  We didn't really find out anything new there.  That doctor bascially said that as long as the biopsies are clean, then it doesn't really matter what the cause for the constipation is - the treatment will be the same.  We could go through lots of painful and expensive testing to see if it is because of slow motility or muscles that don't quite fire in the right order or who knows what, but in the end all of those things just require you to give them a lot of laxatives.  So I guess that's what we'll do. 

He also felt that it was probably extreme to consider a Nissen surgery (where they wrap part of the stomach around the esophagus so that nothing can come back up) for the reflux since no damage is being done by the reflux. I am not certain that I buy the idea that it's not a problem to be reliving your meals over and over again all the time, but since we've now had two different doctors tell us that we should not do the surgery yet, I guess we'll take their advice for a while anyway.

I am frustrated that they couldn't come up with something more definitive, but the only thing left to do now would be to drive Owen out to the Cleveland Clinic which is the World's Best GI Clinic.  That would be a very long drive and we would have to really think about whether or not there would be enough benefit to warrant putting Owen through all those tests again.  We're going to give it some time to see how the new regimen that we have recently started with the Miralax works for the constipation.  If we can keep it under control then we will probably leave it at that.  If it continues to be a huge problem then we'll be hanging out in Ohio for a bit (Kristen would be happy about that anyway, that's Cayman's Mommy and she lives in Ohio).

In other better news Owen continues to make lots of progress in his therapy.  Since we have started doing feeding therapy every week we have seen a big difference there.  When we started he couldn't deal with a piece of food that was too big to fit in his mouth - instead of biting a piece off he would just try to cram it all in and then spit out the whole thing.  Now he will bite off a piece and chew it.  We also know that some of his constipation was due to the fact that he wasn't chewing his food well enough.  He is now happily crunching away on his food and we are just working on stamina. 

The "O Ladder" as my Dad calls the creation in my last post is really working well with Owen.  I don't have any pictures because my camera has died and I'm saving up for a new one.  I have an old one that I use to catch a few pictures here and there, but the battery only lasts for about 15 minutes so I have to really plan ahead to use it.  Anyway, the ladder has really given him a way to work up to a standing position and to easily steady himself. 

The other day I brought in a scooter that used to belong to Owen's sister.  It has been in storage for a few years and on a whim I brought it in.  It looks like this:


I tried to sit Owen on the seat and he didn't seem to want to sit down.  At first I thought it was a balance thing, but then I realized that he was trying to stand up.  He had put his hands on the hand grips and stood right up.  He then proceeded to walk halfway across the room while holding onto the handlebars!!  I was steadying him so that he didn't fall off to the side, but he just took right off!  I certainly didn't expect that!  So next I'm going to rig up one of Sammy's old walk-behind toys for him to hold on to and see what he does.

Owen has also started doing a lot more at school.  He only goes one morning a week, but many times he would just kind of sit and watch the other kids and get cranky if you tried to get him to work with any of the jobs in the classroom (it's a Montessori classroom).  The last few weeks have been much more productive however.  This week he was all over the classroom (I bring his walker) and he worked hard on the wood cylinders that you pull out of a block, on pulling pieces out of a puzzle, at talking to the fish in the fishtank, and he particularly liked the big sponge with all of the soap suds that they can squeeze.  He even made an attempt to play with another child for the first time and while a little girl was scrubbing a shelf he came over and rubbed his hands in the soap bubbles she was making. 

Finally today we went down for speech therapy in Greensboro.  This was probably our best session yet.  Owen has really started to vocalize a lot more.  The only thing that really sounds like a word is still Mom, but he gave a try at quite a few today.  When Emily (the speech therapist) brought out the duck and said "Quack Quack", Owen said "a" "a".  I've been working on saying "Uh oh!" whenever he drops something. He dropped a toy during today's session and he said "uh uh".  He also said "ah" several times with the airplane - each toy has a song that emphasizes a sound and the airplane's sound is "ah".  Owen clearly had a lot of fun at therapy today and participated much more than he has in the past.  He has also graduated to sitting up in the big boy booster seat at the table for speech therapy, rather than sitting with Mommy on the floor.  I think it has helped to have him more at eye level and for him to know that he can't just lay down and stop working. 

So it has been an exciting few weeks.  And now it's time for this Mommy to head to bed.  Good night!

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