Gregory's First 6 Months

Gregory's first six months of life were easy for the most part. He was a good happy baby. Was sleeping through the night at 6 weeks. Ate good. Grew good. Ü His diet consisted of soy formula. Then he started on rice cereal mixed with his formula. Starting him on fruits and veggies was so exciting! We were told by our clinic that he can have all fruits and veggies except a few that were very "questionable". They were apples, peas, watermelon, and tomatoes.


I can't remember right now, but like any parent we started with one fruit and one vegetable. This was just so exciting introducing new foods to your little one. And then when enough time went by we'd do another one. I even got into making my own baby food. It was so fun! That was until we got his blood results back.


See, Gregory gets his blood drawn every 2 months. They test to see how much galactose is in his system. You and I would show up at a zero. Gregory's clinic likes him 2 be at a 2 or lower. He came in higher than this which, being new to all this was very scary. At our next appointment with his dietitian, we learn that they are not really sure if they can have ALL fruits and vegetables. That all fruits and vegetables contain galactose but some have it in a form where it is absorbed into the body and some are not. There is still a lot of "unknowns".


So you mean we could have been "poisoning" our baby and not even knowing it? It was just scary to us because up until now we hadn't seen his numbers jump. So, we decided to be more strict and slowly introduce a new fruit and veggie every 3 months. Ugh! That would give enough time for that food item to show its affect on his body and his numbers.


So, we started with the lowest fruit (in terms of the amount of galactose) and the lowest veggie . . . Gerber peaches and Gerber Green beans . . . which he still loves and asks for by the way. Ü


From there, I can't really recall . . . it was a slow process. I know for awhile he ate a lot of peaches, strawberries, green beans, avocado, canned chicken, and lenders bagels. Part of it was getting the hang of it, us being new to it all, being scared, and more strict. It was a slow process that took a big jump after going to the Parents of Children With Galactosemia conference last summer in MN. It was there that we decided to go ahead and just give him all fruits and veggies (except the main ones . . . apples, watermelon, tomatos, peas). At the conference the new news was that all fruits and veggies are okay. But this being some what new information, Tommy and I decided to hold off on the main ones but go a head and start giving him fruits and veggies!


This was so exciting! It opened up a whole new world for options! So fun. The day we flew home, from the airport we got him a banana . . . his first one. It brought us such joy as parents to see our little boy at 2 1/2 eat his first banana!

Me & my rice milk

Me and mom getting my rice milk @ Costco!

In-N-Out Baby!

So to be out and about . . .  either running errands, shopping, going anywhere public really . . .  has to happen in between meal times . . . because finding a place where Gregory can eat is hard. Especially when you are mommy doing busy mommy stuff and all you want to do is run through a drive through or just stop some where quick because you're both starving. But no, you have to stop and go home. Or fill him up on snacks from his back pack of Sponge Bob crackers and raisins. Not filling for a 3 year old growing boy.

So after seeing all "convient" or other wise known as "fast" food type places on the internet and going over the ingredient list of each item . . . that is if they had it . . . I found that In-n-out was somewhere he could go!!! Tommy & I were so excited because we LOVE that place and would go as a "special treat". But now its just where we go . . . sometimes on the weekend. But on Tuesdays, Daddy day, Gregory and daddy always go! And then on to Bass Pro Shop of course! He can have it because they pride them selves on fresh ingredients . . . so he gets a hamburger patty thats just pure beef . . . no fillers . . . cooked on the grill that has no traces of cheese or butter. Yes, we tell them to do this every time. And then of course, french fries!!!! Oh Gregory's favorite! He can have potatoes . . . they are just pure potatoes cut there and fried in vegetable or soy oil which he can have. He gets his cute hat to wear and sticker sheet and he couldn't be happier. He knows the logo, sees it off the side of the freeway when we pass it and even has a shirt from there that his mamo got him for his 3rd birthday. Soon we'll check on the bun so he can start eating it like a big boy! With mustard and pickel? Yum!

News Letter

I just received the Newsletter from the Galactosemia Foundation Galactosemia Foundation Here it is!

Newsletter

I'm dreaming of Rice Dream

Yeah for "Fresh & Easy"!!! I just got back from grocery shopping at Fresh & Easy and low and behold they now carry the juice box size containers of Rice Dream Rice Milk! Up until now I've only seen them at Wild Oats and Sprouts . . . maybe Safeway. And these are just stores I don't go to and are very inconvient to go to for me. But now they are at my store I go to every week and Gregory and I could not be more excited. Not as exciting is the price . . . 3 juice box size boxes for $2.99. Ouch. :(

When Gregory was born

One day old!

Two days old and a little jaundice.

Gregory was born on February 2nd, 2008. He was 9 lbs and 10 oz.Yes, I know, he's big. :) I was in the hospital for 5 days due to having a C Section and high blood pressure. The night right before we left Gregory was circumcised.  Hour or so later we got to take our lovely new baby boy home for the first time!

Leaving the hospital

We got home around 8:00 or so (if I'm remembering right) . . . got it all on video . . . got settled in . . . ate some Arbys in bed . . . and . . . fed Gregory . . . and went to go change him on his new changing table . . . and to our scared eyes his new born sized diaper was soaked with blood. You could see it from the outside. He wouldn't stop bleeding from the circumcision.


So back to the hospital where he was born and to the emergency room. I remember it was freezing out that night. They tried to cauterize it to stop the bleeding. It worked a little. But came home and the rest of the night still bleeding.


His 1st appointment with his pediatrician (at the time) was with Dr. Scharff. He was AMAZING! We were in his office for at least 2 hours where he helped stopped the bleeding, got us blanket for Gregory, did blood work, made calls and really fought to see what was going on. I really believe it is because of him we got the new born screening results back so fast.


I'll never forget being at home and finally feeling somewhat relaxed and settled in . . . we were at a hospital or doctor for the first 12 days of Gregory's life. Ugh! My mother in law, Joyce, had just stopped by to bring us some dinner and Gregory's doctor called me on my cell. He told me to sit down. I sat on Gregory's rocking chair in his room and he proceeded to tell me that Gregory came back positive for a metabolic disease called, Galactosemia. That word  sounded so weird and foreign at the time. He said stop breast feeding him and stop giving him the formula you have now and come in.

His bandages from getting blood drawn every day.

Dr. Scharff called us into his office immediately where he described it as a metabolic disease. Gregory didn't have the enzyme in his body to break down the sugar galactose. And the only way for Gregory to be born with it is for Tommy and I both to be carriers. That's why its so rare. What are the chance of two people who carry the gene producing a child? Crazy, huh?


He him self had only seen some one with galactosemia once in his 20 some years of practicing medicine and it was when he was  in med school. He was very honest of his lack of knowledge on the subject. There were only 2 doctors in Arizona that dealt with it . . . one in Tucson and one in Phoenix. He referred us the Children's Rehabilitation Services to see Geneticist Dr. Alec. He deals with metabolic diseases.


We thank the Lord for Dr. Scharff and for us getting the New Born Screening back so fast. Usually it takes 14 days and we found out in 7. Many babys with galactosemia die with in the first 2 weeks from not knowing that they have it. Galactose is like poison to there body and it attacks the liver and they get sick and die. We are so thankful that was not the case for Gregory. He was just jaundice which is affect of the galactosemia.

One week old . . . when we found out he has Galactosemia

Typical Day in terms of food

Here is what Gregory eats on a typical day:

Breakfast:
~Cup of Rice Milk
~Cheerios with Rice Milk
~Multi-vitamin

Morning Snack:
~Graham crackers

Lunch
~Hebrew National Hot Dog (he can't have animal bi products so the hot dogs have to be kosher)
~Gerber Green Beans (yes, the baby food . . . he requests it)
~Strawberries
~Bread he can have
~Rice Milk

Afternoon Snack
~Popcorn (Orville Reddenbocker Natural Simply Salted)

Dinner
~Some sort of meat prepared so he can have it
~Nectarine
~Corn on the cobb
~Bread he can have
~Rice Milke

Diet

We currently eliminate the following from Gregory's diet:

• All Dairy
• Apples
• Watermelon
• Tomatoes
• Peas
• All Beans and Legumes

So, knowing this . . . you'll have a better idea of how Gregory eats and why he eats what he eats. 

Gregory

Gregory is a very active 3 year old little boy who his daddy and mommy love so much! Gregory was a little angel the first year of his life and since then has kept mommy and daddy on their toes. He is now "strong willed", "spirited", has "sensory processing disorder", has had speech therapy and some occupational therapy. All of these things are hard to deal with now but will make him such an amazing person later.

My question is . . . which of these things and things to come has to do with Galactosemia?

I hope to use this blog for other galactosemia parents to share our experiences and give each other support with this very "unknown" disease. That might be the worse thing about galactosemia . . . the unknowns. :(

My hope it to also use this blog as a communication tool between parents to share our knowledge. I have yet to find anything like this on the web. I will share my knowledge and hope to learn more from others.

There are many other things that define Gregory at this moment that are not related to Galactosemia . . . his love of cars, sponge bob, books, trucks, running out side, fishing, bass, music (both playing and listening), dancing, imitating, acting, being funny, and many others. He is such a special boy in every sense of the word. We love you Gregory!

Galactosemia

Our son Gregory has a rare metabolic disease called "Galactosemia". He lacks the enzyme in his body to break down the sugar, galactose. Galactose is mainly found in ALL dairy products and other things as well. Here is medical discription:

Galactosemia is an inherited disorder. This means it is passed down through families.

It occurs in approximately 1 out of every 60,000 births among Caucasians. The rate is different for other groups.

There are three forms of the disease:

• Galactose-1 phosphate uridyl transferase deficiency (classic galactosemia, the most common and most severe form)
• Deficiency of galactose kinase
• Deficiency of galactose-6-phosphate epimerase

People with galactosemia are unable to fully break down the simple sugar galactose. Galactose makes up half of lactose, the sugar found in milk. The other sugar is glucose.

If an infant with galactosemia is given milk, substances made from galactose build up in the infant's system. These substances damage the liver, brain, kidneys, and eyes.

Persons with galactosemia cannot tolerate any form of milk (human or animal). They must be careful about eating other foods containing galactose.

Parents of Galactosemic Children
Galacotsemia Discription