Wednesday, August 26, 2009

Some good, some bad..... you take what you can get!

For those of you who follow me on Facebook you already know how excited I was for school to start. I promise I am going to be posting pictures of the boys when Jordan starts next week.

Now, for an update on Josh. He had his appointment with the Feeding Clinic today down at Primary's. We haven't been to the Feeding Clinic since a couple days before his initial surgery to have the feeding tube put it. We have made several trips down there, but it has been three months since we met with the whole team.

So... this is where he stands. He currently weighs 25lb even. He is 35 inches tall!!! I knew he was growing, but sheesh! So although he has gained from last appointment, he still has some gaining to do for them to be happy. For his height, 28lb is ideal. But whatever we take what we can get. His BMI is 2% so that reflects that he has not much fat on him at all. So they are increasing the amount of formula again to add some extra calories.

His reflux has gotten worse since his tube was put in. It can be one of two things. When the G-tube was placed, it did change the position of the stomach, and 2% of kids have reflux worse, post surgery. Also we switched his reflux meds when all this happened and they may not be working as well. So we have added ANOTHER med to see if that helps. He also is not sleeping well at all right now, with 45-60 min stretches for the norm. His GI doctor hopes it is reflux related and we can solve that problem fast. If not, it will be another new doctor that deals with sleep disorders and more tests. Yikes!

His constipation issues are coming back, but not as bad as they were before we took him off Milk, Eggs and Soy. The doctor is really at a loss as to what to do next. So we are going to add 3 more meds for that and see what we can do. The next step is to take him off all food and slowly add one thing at a time to see if it is food related. Both his Dr. and I agree it is likely a food allergy since when he has been sick and on tube-feeds only, he goes back to normal. So we'll see what happens.

The last thing I got 'lectured' on was his immune system and the precautions we are going to need to take this winter/illness season. She warned me that with the problems he has, coupled with his G-tube and problems with it, we need to treat him like a immunocompromised child. He does have a history of catching everything as well... so this isn't too much of a surprise. A simple cold can land him at PCMC this winter, so we are going to follow through with all her suggestions. If you live close enough to visit... be prepared to be met at the door with hand sanitizer from now on. The boys will also have to be more careful as well.

So that is about it for Josh. He is doing good and he is doing some new things lately. He is signing even more than ever and is a happy go-lucky boy again. We really missed that this summer with all his problems. We are just adjusting to his new feeding routines, and the kids school schedules. Wish us luck!!!


Tanya said...

Oh honey. I don't know what else to say.
Yep, you take what he can get. He's growing, and he's happy...these are good things!!!

Annie said...

Man he is really tall. Mason who is 3 is only 32 inches and weights about 27lbs. I don't know how you deal with the sleep issue. Hopefully you are getting some rest sometime! It is not fun to be sleep deprived, so hopefully you can solve that one fast. I am glad he is still a happy boy for you. I can't wait to see the school pictures!

Jessica said...

I am so glaD HE IS gaining weight! That has to make you feel good about the G tube choice. So what about getting the Nissan surg? I remember in the begining you were talking about that possibility. Okay so If you do go to a sleep specialist yuo must see Dr. Pfeffer...I know you knew that one was coming! I adore her and like I have said before she has saved my boy more then once. I hope you are doing well. I loved the idea about meeting people at the door with the hand sanatizer...I am going to do that as well. What other suggestions were given???? Are you going to give Josh the swine flu shot? I am debating but I think thats what we are going to do..

Ahhh, I wanted to meet you down here yesterday, I will drive up there maybe next week...we'll see.+

Doorless said...

What formula is he on? My girls reflux was much worse when they were on Pediasure. I tried a can of it once out of couriosity and it just sat in my stomach for hours and was very uncomfortable. It is very rich and for those with slow emptying it can cause reflux. I changed the girls to Complete and it is a food based formula with the same amount of calories. It also helped the Elf's bowels.
So good he is growing and happy! I loved th picture of the mess he made. He is all boy!