Time to Eat!

Things have been SO hectic with Christmas dinners and such that I never got time to post Carson's first eating experience. It's so sad...I cannot even remember what day we first fed him! It was before Christmas, probably the weekend of the 18th. He had his first taste of rice cereal. Mommy was not very smart and only mixed it with water, so Carson did not like it much that first time.




But as you can see in the picture above, he has grown a little fonder of it. I mixed it with apple juice first, since Carson is allowed 2oz of diluted apple juice a day to help his tummy. He really liked it. Then I found out from the dietician that it was ok to mix it with his formula, as long as we fed it with a spoon and not in a bottle. There was some concern at first, on my part, because they told me not to mix it with his bottle for fear he might lose the taste for his formula. But now we are really getting with it! It is taking him a while to master the task of eating from the spoon, but no more so than any other baby! It's all the fun...

I am SO excited about Carson beginning to eat! I know that we have many, many challenging days ahead with the special diet, but I am ready to tackle it...FULL STEAM AHEAD AND BRING IT ON!!!

A Rare Sight

This past weekend was Carson's first snow! He wasn't very impressed. He just thought it was too cold. However, he was impressed with seeing it fall. He woke up fussing around midnight Friday night, for some reason, so I went to his room and picked him up (I was still awake anyway). I knew there was a possibility of some snow, so I looked out the back doors, and lo and behold, it was snowing like crazy! With the flood lights shining you could really see the snow falling, and it caught Carson's eye while we were standing on the back porch. I took some pictures because I was afraid it would stop before morning.



(Yes, I'm the crazy person in shorts with no blanket for the baby, but we only stayed for a minute!)

The next morning, to my surprise, we awoke to a winter wonderland! These white wonderlands are few and far between here in Alabama, so we cherish each one we experience. It was beautiful!






The last time we had snow was March 1 of this year, and it was a little deeper than this then. Carson was in Mommy's tummy then, so he couldn't see it, but he was there!

We're All High

Ok, so maybe I could have chosen a better title for this post, but I knew it would get some attention! Of course we are not talking about drugs! I am talking about blood tests. Carson and I both received news from our blood tests last week that our levels were high. Carson's phe level was 10.7, the highest it has been since we started treatment. I know that he is supposed to be ok, but it still makes me nervous. It was last checked 9 days before that, before Thanksgiving, and it was 5.2 then, so it doubled in 9 days. I don't understand how all that works, but I expected it to be lower. Anyway, the doctor gave us orders to do what is called a "washout"; we have to give him phe-free formula only for 24 hours. Then they gave us a new recipe to mix for his formula. They made it for 32 ounces, which is more because he is getting bigger. Last time he weighed 12 pounds and 15 ounces, so he should be well over 13 pounds now. We will find out tomorrow, when we go to have his blood checked again. Here's hoping we're back in the normal range!

My level that was high was my thyroid hormone. I have a very wacky thyroid problem. Several years ago, my doctor discovered that my thyroid was VERY high after many tests proved that my heart was not the problem. By the time we finished running all the thyroid tests, my thyroid was LOW! So I have been taking thyroid medicine ever since. Two years ago, after I had a miscarriage, I began having the symptoms again. My thyroid level had suddenly gone up! The same thing is happening now. Almost 4 months after having my baby, I was having symptoms again. I went to the doctor last week to have him check it, and they called me yesterday to tell me it was high. So now, once again, I get to cut my thyroid medicine in half. I will go back in 6 weeks to have it rechecked, and hopefully it will be normal. Of course, it would also be great to not have to take the medicine at all anymore!

So, we're all high around here. Like I told someone yesterday, if it's something freaky, it's going to happen to us!

Carson's First Thanksgiving

Everyone enjoyed being a part of Carson's first Thanksgiving. On the Sunday before, we had dinner at Papa Green's house after church. There we got to see Papa Green, Nanny Judy, Uncle Darwin, Kevin and Marsha, cousins Caleb and Jessica, and little cousins Aaron and Kimberly. Of course, Granny and Pops and Uncle Eric were all there too. This was also the first time Carson met Uncle Darwin.

On Thanksgiving Day, as Marty said, we went from one extreme to the other. We went from ex-military shooting guns to gospel singing around the piano! For lunch we had the Parker Thanksgiving at my Daddy's house for the first time ever. It was fabulous. We had lots of good food, including Grandmother's famous chicken and dumplins, and got to spend good quality time with the family. Carson got to meet Uncle Jerry and Aunt Becky, Uncle Lynn and Aunt Beth, and cousin Tiffany and her boyfriend Chris(?) for the first time. We also got to see cousin Kristi and little Olivia again, as well as Uncle Eric, Papa Steve and Glenda, and Grandmother. We were sad that Aunt Billie couldn't be with us because she had to work. After lunch, several went outside to shoot guns. Eric thinks he counted about 16 different guns out there!




Some of the men gave Marty a hard time because he would rather babysit than go out and shoot the guns with them. He decided to watch Olivia for Kristi so she could go out and shoot. Marty's secret is out now...he loves babies! He has always been great with kids, but now that he has a baby of his own, he is perfectly comfortable with holding other babies too! And during this moment, Carson discovered he could pull someone's hair other than Mommy's! Olivia has plenty of it to share...




For supper, we went to Nanny's and had the best food ever! There we saw Granny and Pops, Uncle Darwin and Aunt Donna, and cousins Caleb and Jessica, Kimberly, and Aaron again. We also had a special surprise: Great Aunt Jimmie and Great Aunt Nancy were there too! This was the first time Carson met them and Aunt Donna. Aunt Jimmie had a fit over Carson and had to fight Granny to keep holding him! She sang him to sleep. We think he loved her so much because she is goofy. After supper, Aunt Jimmie played the piano and we gathered around and sang from old hymnals. It was a GREAT time! Of course I love to sing, and Carson loves singing too. He shouts while we sing like he is trying to sing with us!


Enjoying the singing


Our Thanksgiving sing-a-long leaders


Aunt Jimmie singing to Carson

Some random reflections on Thanksgiving:

I have discovered that there is one thing that Carson doesn't have a shortage of (besides clothes!), and that is Great-Great Aunts! On my mom's side, Nanny has 5 sisters, and on Marty's Daddy's side, Grandma Ravenna has 5 sisters left also! That's 10 SO FAR! And there are a few more on other branches of our families. Aunt Jimmie realized at Thanksgiving that she is Carson's Great-Great Aunt, so she just kept saying "Great" because she lost count!

I also came to the realization that Carson will never be able to eat Thanksgiving turkey. Now is the time to be sad, because when he is old enough to understand, we have to show him it is completely normal, and by then it will be. This is the first time I have had to digest this information. Because of Carson's special diet, he cannot have any meat. If I hear one more person ask if he had some turkey I will scream! We need everyone in our families to learn and understand so that Carson will never feel alienated at family dinners. We will learn to make food especially for him and make him feel right at home no matter where he goes. Start practicing now, people...no more turkey talk.

At the same time, I have SO MUCH to be thankful for. God has TRULY blessed us with an abundant life just as He promised. Although Marty still has not found a full-time job, our needs are met exceedingly. We are blessed to have our wonderful, big families, including all our grandmothers. I still have one grandfather, and Marty has a great-grandmother! Our families are all in good health right now, and so are we. And now we have our beloved baby boy, Carson, who blesses our lives every day! God sent us a special son to love and care for, as He desired. We prayed so hard and waited so long, and now we have our first baby.

"Delight yourself in the Lord, and He will grant you the desires of your heart." Psalm 37:4

Living proof of that right here. GOD IS GOOD. Let us give thanks.

The Way It Is

Carson now has to go to the local pediatrician's office weekly to have his blood drawn to test his phe level. Babies grow so quickly the first year that weekly levels are necessary, because as they grow their needs change. Usually when he hits a growth spurt, his level bottoms out. I leave work early, usually every Friday, to go with Carson to the doctor. I know that Daddy could take him all by himself, but Mommy wants to be the one to hold him when they stick that little heel! I feel like I have to be there for him, and I do not want to miss anything he has to do. I don't want him to go without his Mommy! They currently stick his heel to draw the blood, then send it to the state lab, who relays the results to Carson's doctor at UAB. The nutritionist calls us with the results a couple of days later. If his level is out of the normal range, then they make adjustments to his formula. Carson's most recent phe level was 5.2. Normal is between 2 and 6, I think.

The formula we feed Carson is a mixture of regular baby formula and 2 medical formulas; one which contains protein without phe, and one that contains no protein at all. The recipe for this mixture is prescribed by the doctor at UAB and given to us by the nutritionist as Carson's needs change. I mix up the formula myself every day, either at night before bed or first thing when I get up in the morning. The recipe makes a 24-hour supply which we keep refridgerated in a measured container. Right now, Carson drinks 28 ounces of formula per day. The formula is all powdered and I measure it out on a gram scale, add water, and mix it with a whisk. We keep a notebook in which we write down what time and how much he eats with each bottle he gets. That way we can monitor how much we have given him and how much he needs. If he is still hungry after drinking all his 24-hour supply, we have to mix a bottle of the protein-free formula. When he starts to need more formula on a regular basis, we have to call the nutritionist and get a new recipe to make more formula. The powdered medical formula is shipped directly to our home each month, and thankfully our insurance does pay for it.

So that's the way it is now...the fun starts when he starts eating!

The Beginning...

We found out we were expecting our blessed baby the day after Christmas, 2008. What a Christmas present! We were beside ourselves with joy, but nervous at the same time due to a previous loss. Thankfully, God saw fit to bless us with our happy, healthy little boy, Carson Allen Rice, on August 16, 2009. We had to make several trips back to the hospital that first week to keep a check on his bilirubin count for fear of jaundice. Daddy took him for a few walks out in the sunshine, and soon he was out of the woods...OR SO WE THOUGHT.

When Carson was a week old, I received "the phone call". The pediatrician himself called to tell me that Carson needed to have some more tests run because one of his newborn screenings came back abnormal. He informed me that although the test could be done in his office, the results would come back quicker if we went to Children's Hospital in Birmingham. He made it sound very urgent, that it needed to be done as soon as possible. By this time, I was a little freaked out. I asked him which test it was. His response indicated the PKU screening. He added that it was very rare and probably just a "glitch", but we really needed to do further testing to find out for sure. So, we loaded up and drove to Birmingham the next day for our first "adventure".

Now, I knew at least a little bit about PKU from reading on the internet and in my "What to Expect..." book, but everything I had read seemed to escape my brain as soon as I heard the words come out of the doctor's mouth. I grabbed my book immediately and began trying to figure out what we were dealing with here. Surely it was just a glitch, because no one in either of our families had ever had PKU, or even knew what it was! The doctor's office included some materials on PKU with our lab paperwork to take to Children's, so much time was spent studying and dropping jaws in disbelief. During the waiting period for Carson's results, we just kept praying and convincing ourselves that this was definitely a "glitch".

When the results came in, Carson was indeed positive for PKU; his phenylalanine blood level was 29. We were completely stunned...I even felt numb. How could this be? Our little baby was finally here, and he was perfect! Daddy's initial response was to question God. Why did this have to happen to our little boy?! I was quickly able, through intense Mommy super-strength, to move past that point and begin figuring out "What can I do about it?" instead. I realized that God had sent us a very special baby because He knew that we were capable of taking care of him. I truly believe that in my heart and remind myself of that quite often. Carson is our special boy. There is nothing wrong with him. He is a perfectly normal, healthy, happy baby who just happens to be on a strict Vegan diet!

We were then sent to UAB to the clinic for genetic disorders. There we met a wonderful doctor and staff who explained to us everything we needed to know about Carson's PKU. They gave us a special formula to start feeding him to keep his levels down in the normal range. They also gave us some tissues and allowed us to cry. It was all so overwhelming that I could barely remember anything they said. After having much time to process all the information, I realized how blessed we are to have the great medical care and technology available now. Thanks to those tests, Carson can live a normal, healthy life. GOD IS GOOD!