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!!!

Saturday, August 22, 2009

Forgetful Mommy!

I am forgetful. I will admit it.... what mom isn't? I am usually not forgetful about making sure Josh's dresser drawers are locked. We keep his extra med supplies for his G-tube stuff in his top drawer. If left unlocked he can open it from the crib. This morning I woke up and heard him just happily giggling and talking to himself. I am thinking this is great... it can buy me another 5 min or so. Mmmm.... bet I won't make that choice again!

This is what I woke up to see. And boy was he happy about his accomplishment!

Monday, August 17, 2009


Trevor asked me to take these pictures of his the other day. He makes me laugh at times when he randomly asks for pictures to be taken. But whatever, he is a funny kid. So here he is all decked out ready to go shopping with me. It is so hard to believe he is starting 2nd grade a week from today. Where did my baby go?

Thursday, August 13, 2009

2 Weeks

Just thought I would give a quick update on Josh. After two weeks of screaming through feedings, many dressing changes a day, lot's of sleepless nights, a doctor' appt, and many phone calls later.... he should be on the upswing!

I probably should just give you a little explanation. Josh had his button put in 2 weeks ago. Since then he has had alot of pain and problems with his G-tube site. I did all the stuff I have been told and couldn't figure out what was wrong. So after a weekend of horror here, I took him first thing monday morning into his pediatrician to find out why his G-tube site is so sore, red and looks awful. He looked at it and said he had never seen anything like it. So he called down to Primary Children's and was able to talk to Josh's GI doctor. She told him she was heading out of town and to call in a heavy duty barrier cream and call the 'ostomy' nurses at PCMC. So I called down on tuesday to talk to the nurses. After an hour of talking to several of them it was decided he needed to be seen by a GI doctor. Well his regular one had just left out of town. So Dr. Pohl... a brand new doctor at PCMC.. agreed to see Josh today in between surgeries. It was so great to get it so fast.

So....the diagnosis? He has a staff infection. Nice huh? Poor kid. He has been bleeding alot since yesterday and it just looks so sore. I feel bad. But he got some antibiotics and some heavy duty cream and should be feeling much better in 48 hours. We hope anyway! The bad news is that where the skin has started to recede from the G-tube hole... is going to just cover over with scar tissue. So instead of a scar the size of the G-tube hole, his scar will be at least the size of a quarter. But that is a small price to pay I guess. At least it is on his stomach.

So that is the news. Thank you for your concern and love. Josh just never can have it smooth sailing! He is such a trooper though and did great today. He really does not like going to the hospital (can you blame him??!!) but he didn't cry or whine once today. I am so proud of him!

Saturday, August 8, 2009

Opinions Please?????!!!!!!!!

So I want opinions. Jordan insisted I shave his head at the first of the summer. I did, but informed him I wanted him to grow his hair for school. So we have been letting it grow all summer and it finally is long enough that he doesn't look bald. Well this morning he decided to be a stinker and shave a small area (like the size of a grape) in his hair. If I just comb it over like HE likes it to be done, I can't cover the spot. So I got some hair gel out and tried to do the messy look. I didn't get it to turn out, so I mohawked it. Scott LOVES it and thinks we should do it all the time. I honestly don't care..... just as long as I don't have to cut his hair, and it looks decent. So what is your opinion? Do you think it looks OK, or would you never let your kid out of the house looking like this? Please be honest... I won't hold it against you!!! I want honest opinions!

I know his hair isn't really long enough yet, but it will grow.

Tuesday, August 4, 2009

Playing Catch-up

I would love to be so on the ball I had pictures downloaded and ready to go for this post. But..... life doesn't always work out that way. So there will be pictures soon........

We haven't been busy as in going out and about, but we have been busy here at home.

My sister, Amy, and her family have been here from Philly visiting. It has been so wonderful to see her and spend family time together. Makes me miss her so much more. Today we went to the zoo with all of us siblings, families' and my parents. It was so fun to see all the kids get excited over the animals and just be together. After a quick downtime for us all to rest, we went out to dinner. My dad decided to take us all to El Matador here in Ogden since my sister and brother in law LOVE it and miss it. It was so fun to just be together with no worries and eat yummy food. Thanks Dad... since I know you do read this! LOL!

Other than that we have just been doing the same old things. The kids have been swimming a few times at our pool and getting more brave in the water. It has been great to see how much Jordan has changed in the water this summer. Love it!

Josh has kept me pretty much busy almost 24/7 the last week. His surgery went well of course, but recovery...not so much. I just figured it was a fast procedure, with nothing new as far as incisions or anything, so he would bounce back. It has been just as rough as the last time. He has been hurting a LOT more than I thought he would, and is just in general more clingy and whiny. His surgery site got pretty inflamed and red after surgery and now we have a granulation problem on top of that (granulation is an overgrowth of scar tissue that hinders healing and bleeds a lot). We have been doing the cream several times a day and I think (knock on wood) we have turned the corner on this one. I just want him to feel better so he sleeps longer than an hour at a time at night. But it still is nice to not have that huge PEG tube taped to his stomach, so I am grateful still.

Scott is still looking for a job. He has probably turned in or sent out his resume 150 times by now. He spends quite a bit of time every day looking for a job. It's been 6 weeks now and he is still looking just as hard as he did 6 weeks ago. I am proud of how hard he is trying. I know that the right thing will come along, we just have to be patient. This economy is really rough on all of us.

We are now getting into the swing of back to school time. We will be starting our 'school' schedule next week to get Trevor ready to go. I am excited for this year coming up with all the new changes. I am also realizing I am going to be more busy than last school year. But it's OK, I am getting pretty good at organizing with a calendar!

So that is the latest from here. I will post pictures of the last week when I get some more time.