Dominic's 1 year appointment

We had Dominic's one year appointment and he's doing great! We are finally up to 3-4 grams of fat from food a day, and I'm starting to wean from the limited breast feedings. So far the labs for his ck and metabolic panel all came back good. And the one test we were worried about was his echo cardiogram and it was normal!! He's 95% percentile in height and 25 percentile for weight. His development is right on track, he says some words and since he's been walking for the past few months he's now running and yesterday I caught him on top of the kitchen table. We can't believe he's already 1 and we feel so much more confident about ensuring his health than we did when we first found at 7 days old.

1st Birthday, 1st cup cake - Fat Free of coarse :)

Happy First Birthday!!

Dominic is 1 today! It seems like we've come such a long way since first finding out about his condition at 6 days old. I can still remember the every 2 hours around the clock feedings that had to be done at first, now we are up to 6+ hours at night before he has to eat again. He's been such a strong boy and continues to do well. We had the reality check of knowing we will have times when he had to be admitted when he can't keep anything down, but as he grows he'll be able to tell us better how he's feeling. I am so thankful for the newborn screening, that he was picked up through is so fast and able to get treatment right away. There are still States that do not screen for VLCAD and other Fatty Oxidation Disorder. That's so scary to me having a child with it.
Currently he is able to have 2 grams of fat from food per day, he's still breast feeding about 2 times a day, I'm about ready to start weaning though so that he can slowly add more fat from food. It's hard to find fat free/very low fat protein for him right now and I know he needs it. He's just as wild as his brothers, climbing all over and getting into all kinds of trouble already! The hardest thing I'm dealing with is keeping him from getting a hold of crumbs or food left by his brothers. I've caught him with a piece of chocolate or something else that's way too high of fat for him, I never thought I'd be so panicked by that type of thing. In a week we have his first Echo Cardiogram since he was 7 days old, this will tell us if his heart is normal or enlarged, with VLCAD his heart can enlarge over time if he has too much very long chain fat. We are praying that it's normal and just fine!

Nasty bug

On Tuesday night Dominic woke up throwing up at 2a, I tried to get him to keep fluids down but it wasn't happening. We were told to come in and we've been here at Children's ever since. He's been throwing up and having diahreah and won't drink or eat much so we are stuck until he's well again. He's doing good though, playing in between feeling sick and walking around in his cage. I'm posting some pics when I get back home, the boys came to visit and they played in the cage with Dominic, they loved it and Dominic was so happy to see them. I need one of those cages for the boys at home! We may be able to go home tomorrow if he keeps food and milk down, it's not easy for Dominic or myself to sleep in the Hospital. Thanks for all the prayers from our family & friends! He really is a strong boy and always bounces back fast.

First Hospital Stay

So we've had our first Hospital stay at Children's. Thankfully it was only 24 hours, not much sleep had by anyone in the hospital the way the nurses & doctors come in and out of your room all night. Dominic has had a cold that just wouldn't go away for the last 3 weeks, it started when they all had pink eye. For the last week he had high fevers that were very hard to break. He was still eating very well but definitely not himself. He also started having this weird thing happening where he would turn his head to the side and his eyes would look up, we could tell it was something we've never seen before and it seemed calculated, it would happen over and over for a seconds then stop. I saw it Wednesday then Jeff saw it Thursday. So we called his Genetic doctor and because of his sickness, high fevers and odd tick we needed to bring him in. While were were there he had to get the IV fluids so that he got enough hydration for his muscles, very important with VLCAD when he is sick and poor guy also had to have a spinal tap, it was horrible, I hope that never again has to be done. Turns out he has beginning stages of pneumonia, the Adeno virus and an ear infection, so no wonder he had all these high fevers. His ck levels which are the muscle tissue break down levels that we normal get checked every other month or so are normally mildly elevated at 310 - 320, normal is 300. They were 900!! This scared me very much but the Doctor's said that that is what happens with someone with VLCAD when they are sick. He needs to drink frequently, an ounce an hour and get enough food to help keep from getting muscle bread down. Unfortunately he most likely feels this muscle pain. I'm hoping when he's older he can really tell me and we can keep him well hydrated during an illness. He had a EEG done at the hospital to check to see if they could tell if he had had seizures, what we described to the Doctor's sounded like small complex seizures, not the ones that go with a high fever. They usually can't tell in an EEG unless one is happening or it's a big one that changes the brain waves or what ever they are. His came out normal, very thankful for that. We have to watch him and if we see anymore they'd do further testing. I have not seen anymore and am hoping they stay away for good!
He's doing very well now, on antibiotics and they are helping tremendously. He's a bit weaker than he was a few days ago but he started walking during all of this!! He shocks me how strong he is even through an illness. He'll walk from one thing to another as long as it's not far away. I'm so thankful for all the prayers from everyone!

9 months!

Dominic just turned 9 months yesterday and aside from this past week of a bad cold has been doing very well. Other than when he was first diagnosed he has not had a hospital stay yet. He's gotten through all the colds he's had and has not had any other illness other than that. He's starting to climb, yes, another climber for me, just what I needed lol! He stands, takes a few steps, says Uh Oh, claps and dances. He started doing all these cute little things that start at this age with the last few weeks, so much fun to watch him grow! I can't believe he's already 9 months! Time flies and we honestly thought and were told that we'd have lots of trips to the ER with him, we have not had one and our so thankful for that. He's such a joy and of coarse makes me want to have more children, as each of my children have. Now if I could just convince Jeff :) I'd like a girl!!! Someday! And if I have a few more boys before the girl, that's just fine with me. I think I'm addicted to having babies.

Fat Dreams

As you may know we have to count every trace amount of fat so that Dominic's diet does not go past 1 gram of fat a day. Seems easy enough right, just pick baby foods that have 0 grams of fat. Well, it's not that easy EVERYTHING has fat in it, very small amounts but it's there. Fruit, veggies, all of it. So I go to the USDA website and plug in what I've fed Dominic and then it gives the amount like .12g and so on. Then I have to add it up to see what he can have for the rest of the day. Well if you don't know me, I suck at math, I'm horrible and it doesn't help that my memory is shot after having kids. Jeff thankfully is great at math and made me an excel program to help keep my math headaches minimal. With this daily system of figuring out the fat I'm now having bad dreams about food that I checked and had small amounts to where they were safe for Dominic. In my dreams I'm finding out that what I thought was safe really had tons of fat, these are actually night mares for me since my baby's health depends pretty much only on me since I'm the one taking care of him all day while Jeff is working. I'm hoping these dreams will stop soon, I know that I'm doing everything I can to keep the fat under a gram a day I guess my mind is subconsciously insecure.