The Amazing Owen
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Caleb has also had elimination 'challenges' and a lot of bloating after meals. I started doing some research and found an article on hydrocephalus and diabetes insipidous. This has nothing to do with 'blood sugar' but instead it deals with the release of a hormone, vasopressin from the pituitary gland. Among other things, it effects the regulation of fluids by the kidneys. Some symptoms are above average thirst, really wet diapers (especially in the morning), and elimination issues. A simple blood test can measure vasopressin levels. This article also stated that, for what ever reasons, few neurologists or gastro-enterologists think of testing for this condition. We have requested that Caleb's levels be measured and are currently waiting for the results. Just a thought - Dee Dee
Comment By Donna DeLoach At 4/2/2009 6:52 AM
Wow what a busy week. Hopefully everything comes back good on Owens next round of tests, and they will be able to get to the bottom of what is causing the little man problems!
Comment By Stephanie At 4/2/2009 9:12 AM
His OT's name is Vesna??? My violin teacher growing up was named Vesna. I have never known another one.

Thanks for all these updates!
Comment By Lisa At 4/6/2009 12:05 AM

Original Entry:
A busy week

The last week and a half was crazy, but productive.  Before we have any more appointments and such, I thought I would get us back up to date here.

Tuesday March 24, 2009
On Tuesday we had the "T" party with the physical therapists (PT), occupational therapist (OT) and one of his speech therapists were all here.  The look on Owen's face when he saw them said, "What, all here at once?  You're lucky I can't run or I'd be outta here!".  It was really good to get them all in the same room though.  Everyone was able to talk about what they were working on and strategies to help each other out by including all of the goals in all of the therapies.  For instance you can do speech therapy just about any time.  We have moved to trying to get Owen to vocalize to get what he wants, instead of just focusing on inputting sounds.  That's something that they can all work on.  Arm strength is both an OT and a PT issue so they thought of ways to work together on that.  It was definitely worth it.  Unfortunately I didn't think to take a picture of all of them together, that would have been nice.  We'll have to do it again someday and make sure that we photograph the occassion.

We also let Owen try out a big boy chair.  He did really well in it - it's just one of those molded plastic ones that you get for outside, in a kiddie size:

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Wednesday March 25, 2009
Wednesday was Owen's gastrograffin enema.  This meant getting up and out to the hospital first thing.  This is a very icky test and the nurses and radiology doctor were just awesome about it and were great with Owen.  Without getting into a lot of gruesome detail, they essentially pump a lot of liquid in the back end (that also acts as a stool softener) and then watch everything come back out. The doc said that he did not think that it looked like Hirschsprung's Disease (thank you Emily for pointing this term out to me so that I knew what he was talking about when we got there).  This was good news.  He said that everything looked normal, but even though he'd had three enemas over the four previous days at home, he was still pretty backed up.  This procedure took care of that.  The doc said that maybe he just has a stretchy intestine that is letting things build up. 

Thursday March 26, 2009
Today Owen went to school in the morning and then went to the OT's office for the first time.  Normally she comes out to the house for his therapy, but we can't get as many sessions through Early Intervention as we wanted, so he is going to be seen in the office once a week.  For this session we focused on feeding.  Owen still can't quite do the spoon feeding by himself.  He has the coordination to get the spoon in his mouth just fine, but he forgets to put the food on the spoon.  I think he believes it just magically shows up on the spoon when it gets to his mouth. He also doesn't chew his food as well as he should. Not only do we occasionally find full pieces of fruit in the diaper, but if a piece of food is too big to fit in his mouth he just spits it out, rather than biting a piece off.

Vesna worked her usual magic.  A few minutes in her chair and she had him biting things like a champ.  She has us feeding him long, thin foods that we can put from the side of his mouth onto his back teeth to chew them.  She also has a rubbery thing shaped like a T that he can practice chewing on that he loves.  A few days later we had him actually chewing on pecans and taking a bite from a cookie.  He even did pretty well with the spoon. 

Friday March 27, 2009
Today it was back down to North Carolina for the second time this week, this time for speech therapy.  I think it was at this point that we realized that we had asked too much of Owen in one week.  As soon as we got there he got really cranky.  He didn't want to settle down at all.  After a while of fighting to try and get him to sit, I laid him down to let him rest for a few minutes and he went to sleep, right there on her floor.  Poor guy.  So there were no stellar achievements during that session, and Mommy got to drive two and a half hours back home in a pounding rainstorm.

Monday March 30, 2009
On Sunday we went to dinner at our friends' house and they let us borrow a chair for Owen to eat in because we had forgotten the tray for our portable one (which is really big and not very portable). He did really well in it and it allowed him to sit at the table with us because it is very small.  It also doesn't have a back support that comes all the way up behind his head, so it makes him sit up rather than letting him rest his head like all of the chairs that we use.  We are really trying to teach him not to throw his head back - always believing that there will be something there to catch it.  He did so well in it, and their daughters have outgrown it, so they let us take it home (thanks guys!).  Owen has now eaten three days worth of meals in it.  He has done really well, the only thing is that it really tires him out sitting up like that.  The first two days he was out cold and taking his nap by 11:00 in the morning, which hasn't happened in ages.  But today, the third day, he never napped at all which means that he's building up his stamina quickly.  Here's a picture of Owen in his new seat:

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On Monday I also started calling to try and get the report from last week's gastrograffin enema, but the hospital said they could only give it to the doctor unless I made an hour and a half round trip to get it in person.  They faxed it to the doctor (who should have had it last week) and then the doctor failed to get back to me that day.

Tuesday March 31, 2009
Another call was made and returned by the nurse for the GI. She said the report said that everything looked normal.  We informed her that we had switched him from Milk of Magnesia to Miralax because the MoM doesn't really work and causes too much cramping.  The Miralax actually seems to be working much better, but only time will tell.  She took down a list of his current meds and said good-bye.

Wednesday April 1, 2009
Nurse from the GI's office called today to say that they have set up another round of tests for Owen since the gastrograffin didn't show any reason why he is having so much trouble.  In two weeks he will go in at 5:45 AM (oh, this is what coffee was made for) to be sedated again (poor Owen!) and then they will put an endoscope down his esophagus to check it for damage from his reflux, put an endoscope up the other end to see what they can see about the pooing, and then they are going to take a number of biopsys to confirm or deny Hirschsprung's Disease once and for all.  Hirschsprung's Disease is where the nerve cells in the intestine or colon are not formed correctly in some places thus making it hard for them to push the poo through, or to feel that they need to push.  The images taken during the gastrograffin enema did not show any of the classic signs - such as areas that don't move well - but a biopsy is the only way to tell for absolute sure.

So that is where we are now.  We have an appointment with the GI down at Duke on April 28th.  Part of me said that we should wait on any more procedures until they can see us down there.  But then again having yet one more doctor three hours away from home is not ideal.  Now that they are finally getting a move on up here I am tempted to just stay here.  So I have decided to opt for a middle ground.  We are going to finish this round of testing here.  Then we will take all of our results down to Duke to see if they have any further suggestions or can offer any different treatment.  It would also be good for us to know one of the GI's down at Duke, because that is where Owen goes when he needs to be hospitalized for shunt problems.  Since GI issues are a close second with his brain for severity, it would be good to have a doctor at Duke who knew him.  The last two times Owen has been admitted at Duke we have had GI problems, but have had difficulty in getting them addressed because his GI was up here.  So we should at least meet them so that they know him.

Have a great night!

 
 
 



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