Friday, January 30, 2009

I feel lucky

I feel so lucky to have PKU in this day and age. I just read an article that said they started testing people in mental institutions in the 1960's when they came up with the test for PKU and over half of all people in institutions had PKU.
Can you imagine???

How lucky are we that we live in a day that my son's PKU was diagnosed 9 days after birth? Of course it isn't the greatest diagnosis-- but still it was diagnosed.
Without the PKU test we would be facing a life with a very mentally disabled child.
It is so manageable by diet that he will grow up to be fine.

I have my bad days for sure--- but mostly I am so thankful that we know what we are up against and all it takes is a dietary change.

Thanks be to God for the newborn screening!!!

I have stumbled upon this blog from another that I read.
My heart is breaking for this family. Here I am worried about what my child will eat and this family is dealing with childhood cancer and most likely the death of their daughter.. My thoughts and prayers are with them. Please say a prayer for them and their sweet daughter

Monday, January 26, 2009

How long is "a while"?

Davis' phe level was high again this week-13.6, so we are adjusting the formula recipe to bring it down.

But my question is this.... how long is a "while"? That is the answer I get when I ask about brain damage. His level has to be high for a while for that to happen. But noone can seem to tell me how long that is. I feel certain it is longer than two weeks (which is how long it has been too high) but how much longer is it.

I know they can't tell me an exact timeframe and I am sure it differs from person to person but I just wish I had something more definite. Something to make me feel like I am not causing my child brain damage...sigh...

"Goodlooking eyes and magic ears"

Garrett is so funny. He and Jason were on a walk yesterday and they were talking about the trolls that live in the creek by our house. Garrett said "oh I see them with my good-looking eyes". Laughing Jason asked him if he meant that his eyes were pretty and Garrett said "no-I can see good out of them, they are good looking eyes".

Then this morning I asked him if he heard Davis cry in the middle of the night. He told me that he didn't because he has magic ears and they turn themselves off in the night so Davis doesn't wake him up. Hmmm Jason must have the same magic ears because he doesn't hear Davis either...

Thursday, January 22, 2009

What a sweet big bro.

Garrett is the sweetest. When I was pregnant with him I went to one of those paint your own pottery places and painted him an airplane piggy bank. Well last week he told me that he wanted to make one for Davis. So I searched on the internet and found one near our house. We went last week and he painted a robot piggy bank for his little brother. We picked it up yesterday and he brought some change from his piggy bank to put in Davis'. What a sweetie!!! I just love him to pieces

Wednesday, January 21, 2009

The witching hour

This sums up what the evening hours look like around our house. Davis gets a bit fussy in the evenings. I have started putting him down for a nap around 5pm, hoping he will sleep through it- sometimes it works and sometimes not...

He rolled over!!!

Davis rolled over today during tummy time. Yay!! He also hit his head on the hard plastic side of his little mat, so he cried too. It is ironic that he rolled over today because we quit swaddling him last night because he kept getting his little leg out and because he is getting to the age where he should start rolling and today he did.

His phe level was high this week- 13.4, but the dietitian thinks it is because I fed him a bottle while we were waiting for blood draw-so I am to continue on the same recipe and we will see next week. He is not at all fussy like he was a few weeks ago when it was 15, so I think he most definitely had a little virus or something.

On another note, Garrett has learned how to dial my phone number. He spent the night at Mimi's last night and he has called me about 100 times. He is so funny because he gets mad if I answer it-he just wants to leave messages. This morning I got a message that said "Mommy- I wonder what Davis and Daddy are doing?? I hope Daddy doesn't have to go to work because I want to play with him today." How sweet is that! Too bad Daddy had to go to work.

Thursday, January 15, 2009

Hope for PKU

I just received an article today that has given me hope in dealing with this...

There is a drug about to undergo clinical trials that has worked in mice. It is an injection and it made their Phe levels totally normal.

I am sure it is a long way off from getting FDA approved-- but just to know someone out there is working on something that may help my child is so encouraging. It makes me really thankful for all of the people that I don't even know that are working on something that will affect my family. Wow!

We went to a fundraiser dinner tonight for Garrett's school and a local hamburger joint. What will Davis eat there in a few years... nothing- oh maybe a fruit cup or applesauce. Not fair! Why him?? Why can't I be the one affected. He is so innocent and has no idea what is in store for him. Of course I will try to make his diet as "normal" as possible- but how normal can it be? It makes me so sad to think about it, especially when I see him smiling. He is so happy now. I really dread starting food. It is funny-with Garrett I couldn't wait to start rice cereal and baby food. I am dreading starting food with Davis. To me it marks the beginning of a whole different life- for him, for me, for all of us.

I will do whatever I can for that little boy. I will make his childhood as normal as can be. I will cook low protein foods and buy whatever I can so that he can enjoy food like the rest of us.

But for now, I hold onto HOPE that by the time he is 5 or 10 yrs old there will be something to allow him to eat a normal diet and he will never remember being any different.

Wednesday, January 14, 2009

I'm back

WOW-- it has been a while since my last post. The pregnancy went along pretty uneventful, except I had placenta previa. C-Sections are required when there is a previa, obviously, because the placenta is blocking the escape hatch. The C-section was pretty easy, recovery was easy and breast-feeding was just starting to click.

Davis Merrill W. was born on October 13, 2008 at 7:37am. He was 6 lbs 7 oz and 18 inches long. He is absolutely adorable!

Then... we got the call...

Our pediatricians office called to say that Davis had had an abnormal result on his newborn screening and that we needed to take him down to Children's Hospital and have it redone. His phenylalanine level was high, possibly indicating PKU. I had heard of PKU and new a little about it. I knew enough about it that I knew it was not good. I called my husband in tears, who was working an hour and half away, and he decided to come home immediately. I was at my Mom's house- so me, Davis, my Mom and Garrett headed down to Children's for the diagnosis that would change our lives!

It was confirmed the next day that he did have PKU.

What is PKU??? His body lacks an enzyme that is responsible for converting Phenylalanine (Phe)into Tyrosine. When high levels of Phe build up in the body, it becomes toxic to the brain-causing brain damage and mental retardation, among other things. Phenylalanine is found mostly in foods containing high amounts of protein. The Phe levels can be controlled by diet and he can maintain a normal life by following a very strict diet. The diet consists of a formula that he will have to drink for the rest of his life. This provides all of the nutrients and vitamins and calories that he can't get from food. His diet will consist of mainly fruits and vegetables. He will never have any protein (animal or plant) and starches may be eaten in moderation. Imagine a child going through life with no chicken nuggets, pizza, ice cream, corn dog, etc...

It really sucks- I know it could be worse- but it is pretty bad. It is something that he will have to deal with his whole life. I really worry about how he will be treated in Jr. High when kids are so cruel. And in college when he can't drink beer. And at birthday parties when he can't eat pizza at Chuck E Cheese or have cake and ice cream. And when he goes over to friends' houses to play and he has to bring his own food. I still cry when I think about those things and how different his childhood will be due to his diet.

We have to go down to Children's weekly for blood draws to make sure his Phe level is between 2-6. Over 6 is too high and could cause brain damage, below 2 is too low and could cause him not to grow. This week we were at .7- so we have changed his formula recipe to get it up. Two weeks ago it was 15 and I freaked out! Of course the level has to be high for a period of time to cause brain damage, but that is all I could think about.
Anyway when we go down to Children's I see kiddos that are worse off than him. It makes me feel bad to be sad about his diagnosis because it could be worse. I know that. But still no one wants something to be wrong with their child, no one wants their child to be different.

So that is where we are now- dealing with PKU. This blog will probably mostly focus on the dealings of PKU and the diet.