Caden in the Bath

Caden in the Bath

I just thought that this picture was so cute that I had to post it.

South Dakota Trip Photos

Caden's second roadtrip, being planned

We are going to Wisconsin. We are going to stay in Peshtigo, WI. We are going to leave Omaha on Thursday, September 8th after I get off work and drive half way and stay in Platteville, WI. Then we'll get there early afternoon on Friday the 9th. We are going to come back Monday, September 12th. The trip back we'll driving the whole distance in one day.

I can't wait. I'm going to be uploading some of the pictures from our trip up to S. Dakota today. We went to the Laura Ingalls Wilder homestead, Caden stayed with Penny at the entrance building. He was out of it, and we didn't bring his stroller because we weren't planning on doing anything like that. You bet we'll bring it up there for the "just in case" situation(s).


Until Next time, I continue to ask for and thank you for your prayers.

Changes...

• I have added Caden's last known measurements to the right.


• I will be adding a photo viewer for all of his pictures.


• The picture on top is now a professional picture we had taken in his christianing outfit.

Daddy is getting tested...

Mommy and Caden went to the genetics doctor, Dr. Buehler, on Monday and he was telling her a little better about what to expect during Caden's life.

When Caden turns one, he will start getting growth hormone shots. From what the doctor said, Caden will get the shots on a daily basis, and will be administered by either me or Holly. Fun, fun, fun. He will also start to see a dietician so that he can be checked out to see what type of foods he should be eating and how much of each food.

They also said that his speech will probably be delayed (typical of a child with Prader-Willi), but he will understand what we are saying. He will have a speech therapist as well to help him so he will be on track once he starts school.

The doctor also gave Holly some more packets of information about PWS which she got through part of it and had to stop because it was making her even more worried and sad. I read the whole thing, obviously feeling horrible, but I read it so I knew. Then at the end, when they list the references, I was noticing the dates of the articles and documents referenced, the date span was from the late 1960's up until the early 1990's, and a one from 1996 and two from 1998.

So, I impressed upon Holly that the documents referenced were from earlier on into the "discovery period" of PWS and that the use of growth hormones weren't approved until 2000. So, this is a brand new generation of children with PWS, and there are medical advances and studies happening every day. Maybe this generation will have the eating more under control, and will be able to be more independent. We can only wait and see.


Now to address the title of this post. They are testing me to see if I have "issues" with what is called the "imprinting process." Even though the doctors think that it will come back as normal, they are testing me to be sure. I want to know anyway, because Holly and I plan to have at least one more child, and if I have something wrong, I don't want to put another child through what Caden is going through. I also don't want to have to put my wife and family through all of the worry that we did and are doing with Caden.

NOTE: The imprinting process is where the body "imprints" it's set of chromosomes that are to be given to offspring.

Another reason why I am getting tested is my wife had mentioned to the doctor that a child on my mom's side of the family is very heavy, 150+ lbs. at age 7, and they are worried that I may have received the imprinting "defect" through my mother's genetics. If that is so, then there is a chance that both of my brothers have the defect.

We'll find out shortly if I have it. I gave my blood Tuesday night, and it takes 2 weeks to get the results back.

When I find out you will find out as well.

Until Next time, I continue to ask for and thank you for your prayers.

Bottle Challenge was lost...

I just realised that I never said how the challenge went.

Caden lost 5 ounces during the week he was on the bottle challenge. So, the doctor that is sitting in for Dr. Krenzer while she is out on leave prescribed glucose to be added to his bottles.

That didn't go over very well either. He only took about an ounce for two bottles.

Since we were going out of town, we decided that we didn't want to have her family listen to him while we put the tube in. So, we put the tube in. Over the weekend the little stinker took a couple full bottles and did really good on the others.

We'll try another challenge in the future, but not right now.


Until Next time, I continue to ask for and thank you for your prayers.

Caden's First Trip

Grandma Debbie found out that she had friday, saturday and sunday off. So, when we were at dinner with grandma, mommy said, "Sounds like it would be a good weekend to go to South Dakota." She said it half jokingly, half seriously. Grandma said that she was just thinking the same thing.

So, of course mommy tells daddy that he needs to get off early because we have a lot to do.

Originally, mommy was working on friday, so we weren't going to leave until saturday morning after we fed Caden. So, we were going to have all night to pack and get things ready. But, mommy just took friday off so we could leave friday night. She checked to make sure grandma was okay with it after she took the night off.

And of course, she was.

We left Council Bluffs, IA around 7:30 PM after eating and dropping a key off to my sister so she can take care of Kira (It was supposed to be 6:30 PM.). We pulled into Arlington about 11:00 PM. My usual 3 ¹/₂ hour drive.

We spent the time visiting family and even visited a local attraction. We went to the "Little House on the Prairie." It's the Laura Ingalls Wilder homestead. It is located in De Smet, SD. It was pretty neat. Of course, Caden didn't pay much attention to anything. We'll bring him back when he gets old enough to actually enjoy it.



NOTE: Pictures of all, soon to come.

The Bottle Challenge

As everybody knows, Caden is on a feeding tube and we are trying to feed him by bottle as much as possible. Since he has low muscle tone, he does have a poor sucking ability. But it is getting much better.

PROOF: Yesterday Caden took two(2) bottles that were 5 ¹/₂ oz each.

On Monday, 4 August 2005, his substitute pediatrician, Dr. Michaels, thought it would be fine to do a "bottle challenge." It's where we take out the feeding tube for a few days and only feed him by bottle. Just to see how he does. If Caden loses weight, or doesn't gain any weight, the tube will have to go back in.
NOTE: He has a substitute pediatrician because Dr. Krenzer had a baby.

In the eighteen days between his last doctor visit and monday, he gained 24 oz. Which as you can tell, is a little over an ounce a day. He should be gaining about ³/₄ to 1 ounce a day. During the last month and a half he had to play a little catch up since he spent the 6 weeks in the hospital and was on and off of IV's and other fluids that fluctuated his weight.

If Caden can keep the tube out, obviously this is what we want, but that means that we lose the daycare that was supposed to be provided for him. If he doesn't, he still gets to keep the daycare. Either way, it works itself out.

It looks as if we don't have to worry about it now though. Holly has decided to do a home daycare, of sorts. In the future, I'm sure she'll do it more of what you would think of a home daycare, but for now, it's just a couple of friends' kids. So, Holly will be able to say home with Caden. We do hope at some point to open a proper daycare in the future.

Listen to me, it sounds like I am helping her to do this. I know that if, in the future, this does happen, I will be helping her with the different aspects of it (Advertising, painting, location search, etc.). But, that will happen eventually. Not now.

I just need to hit the lottery so that she can start right now. I know that I would still work my current job, and that she would open a daycare. Obviously she would hire out for more staff, but she would still be there. And of course our kids would get to go there for free.


Until Next time, I continue to ask for and thank you for your prayers.