Right now, being 9 months pregnant, I am very certain I am suffering from a temporary form of ADD. I cannot sit down and take the time to finish all these LONG blog posts about Thanksgiving and Christmas and Valentine's that I'm so behind on. It just takes too much effort and thought and energy. So instead, today I want to share a typical mommy rant. It seems to be the thing to do lately.
Currently, we check Carson's blood phe level every 2 weeks. We prick his finger with a little lancet and put blood in these 5 little circles on a lab slip; the same lab slip they use on every newborn at the hospital. Our clinic supplies us with these slips. We do this at night before bedtime, usually on a Tuesday night. Carson likes it now because he likes "finger painting" in the cirlces. He's such a big boy! He sticks out his finger just like it's nothing. It must not hurt him as much as it does me when I get my finger pricked! lol Anyway, we have to let the paper sit overnight to dry, then the next morning one of us drops it off at the Post Office to be mailed to the State Health Department Lab in Montgomery for processing. Once they process it, they call our clinic at UAB with the results. When I mail it on Wednesday morning, I almost always hear from the clinic on Friday. Well, this past Friday, I never got a call. Monday I was at home with Carson for his speech therapy. Later in the day I realized I still had not received a call, so I called Lauren, our nutritionist. This was after I had talked with Julie and found out she had to call for Noah's results too, and that his didn't have enough blood on it. I was worried about this too because we only did 3 circles and he wasn't bleeding very well so they weren't full. Anyway, Lauren said apparently the lab was behind because they were just getting results from the days before I mailed his. So we kept waiting. She finally called me on Tuesday, yesterday, a full week after we had taken the blood from his little finger, and his level was over 8, which is higher than normal. The normal range is 2-6. Since we only do it every 2 weeks, and then it was late, Carson's level could have been high for the last 3 weeks! I am not happy about that. Carson and I had a cold the week before we took his level, so I imagine that's what pushed it up, so it could have been high for about 2 weeks. His blood phe tends to only go up when he is sick or teething (which he is done with now, I guess).
Now we have to do what is called a washout for 2 days. This means Carson can only have as little protein from food as possible. Most foods Carson eats are higher in protein because he has a good phe tolerance right now. He can have up to 325mg of phe per day. His diet usually consists of dry cereal for breakfast (his fave being Chocolate Cheerios), bananas, sweet potatoes, tater tots, potato chips,applesauce, broccoli, and cauliflower. His special eating out treats are tater tots, Mexican food (rice and chips and salsa), spaghetti squash with marinara sauce at Ruby Tuesday, and homestyle potato chips at Logan's, with broccoli as a regular staple anywhere we go. The low protein foods he has been eating include pancakes, homemade lopro chocolate chip cookies, homemade bread, grilled cheese sandwich, pizza pockets, and pasta. For today and tomorrow, this child can only eat the low protein foods. This is getting more difficult than ever. He is getting so picky now. He is no longer eating the pizza pocket, but just picking out the inside of it and leaving the bread. The same thing with grilled cheese. He's just picking out the lopro cheese. He won't eat green beans or carrots anymore, which are lower in protein than broccoli, cauliflower, or potatoes. He won't eat any fruit other than bananas and applesauce. One banana has 47mg of phe in it, so applesauce is his low protein choice. If he has a fit for a banana we will give him one, because it's his fave right now, but that will be the highest thing he will eat. He will have lopro pancakes for breakfast, and no cereal. Lunch will be the most trying time, because it is always a higher phe meal. Supper is easy because he usually will eat lopro pasta or rice and a veggie. It may have to be some cauliflower, which is lower than broccoli. It's his favorite anyway.
It would just be SO much easier if he would eat like he used to! He used to eat green beans and carrots and squash and mixed fruit and all that good stuff. I am SO frustrated! Why do kids have to turn SO picky?! Especially those who can't afford to be so picky. The most important thing is that he drinks his formula, which provides him with all the protein he needs without phe. At least, thank God, he still likes that. Hopefully, he will use that to fill him up, since I know he's not going to eat much. It just makes me feel so bad for him. I used to think it was not such a big deal, because he liked so many lopro foods. But it's just getting worse. I guess it's just bugging me today. But I will never let him see that. He should and will always be made to feel like everything is perfectly normal and no big deal.
Just like now how I am feeling sorry for him when his baby sister arrives. In just a few weeks, our family gets another plus one. I feel like poor Carson has no clue how his life is about to change. He is totally the center of attention right now, and I'm afraid this may be difficult. But he is such a loving little boy, I think he will enjoy having a little baby around to love on and help take care of. Carson is having trouble with language right now, so it can be difficult to discern how much he actually understands. We started him with speech therapy through Early Intervention a couple of weeks ago. A lady comes to our house twice a month and tries to help us learn what he needs to do to learn to speak and understand better. He can say alot of words, mostly names for things. He is learning a few more verbs now, but still no real phrases or sentences. He can follow most directions we give him, and he seems to understand quite a bit. But it is hard to know just what he understands because he can't communicate very well. I worry about him being able to express his needs and feelings to us with words we can understand. And I think it gets worse, like it has seemed the last 2 weeks, when his phe level is high.
Now I am able to start actually noticing the signs when his blood phe level is high. I was not surprised by this last result. He gets sleepier, and actually started taking naps with me at home this weekend, which he hasn't done in months. And he's been sleeping through the night a little better, except when I leave him. He has become VERY clingy to me, especially at night. He wants me to sleep in his bed with him and he cries for me. It breaks my heart. I think it may have been worse this last couple of weeks because of his phe level being high. He seems to lose his focus sooner. He can name all the letters and numbers, but he is more hesitant with them lately. He also has been more obsessive with his tasks, while at the same time getting frustrated more quickly and wanting to give up on things like pushing things all the way closed or taking his clothes off by himself. He has also been screaming at bath time. Once he gets in the tub and starts playing he's fine and laughing, but he hates getting water in his eyes and face. He is more irritable, and I think it all has to do with his level being high. Once it comes down, I bet we will notice a marked difference in him again.
It is so frustrating because I wish we could have known to do something about it sooner. It makes me want to go back to checking every week. And I wish they would finally come out with a home test, like they have for diabetes, where we can get results immediately. It was announced in our PKU Newsletter last year that a test would be available in the spring, but it never happened. From what I have read, it is still in a trial phase, so something must have gone wrong to delay it. I cannot wait for the day when this part of life can be made just the slightest bit simpler. It will help Carson so much, and I know as we all grow into this more we will also learn better ways to handle it. I guess everything about raising a toddler/preschooler just gets more difficult than it was before. Sigh. The terrible twos.
Now to do a 180. While I felt like sharing all that is frustrating me, I want everyone to know that I am still thankful. I'm grateful we can even know what the problem is to do something about it. I'm thankful there are tests and low protein food alternatives. I'm thankful for our families that spend their time watching Carson while we are at work and make it much less worrisome on us that he is being properly cared for and happy. I'm amazed that Carson has learned so much already, from the alphabet and numbers to how to do household chores and follow directions (and how to press play on his DVD remote! lol). I'm also grateful that we have a program where people will come and give Carson the help he needs at no cost to us and little inconvenience because they come to our home. I'm thankful for the internet, which also allows convenience for me to order special foods for Carson and have them shipped right to our door. This world we live in, while very maddening at times, is just so amazing. We are so blessed to live in this time when we have so many things that make life a little easier for us. We have so much to be thankful for.
So next time you feel like you want to rant, feel free to do so. After you get something that's bugging you off your chest, it makes you feel better. Sharing these things might help somebody else who has been feeling the same way and you didn't even know it. And then after you read it yourself you will realize how blessed you are and thankful that even though you feel frustrated, you have a mode through which to vent your feelings freely, with the freedom to share them with others. And after you realize how many things you have to be thankful for, you will notice your frustration has kind of melted away a little.
That's what's bugging me. What's bugging you?
