Wednesday, June 22, 2011

Where to start???

After realizing its been like 6 months since I have blogged, I realized that I needed to start blogging more. I know when I started this blog, I stated I wanted to give everyone a blow by blow account of what our daily life is life, but after realizing that our daily life is pretty lame, I decided that I needed a blog more for a therapeutic vent than anything.

These past two, maybe three months, have been filled with doctors appointment after doctors appointment. When I took Logan in for his 18 month well baby check up, they did the usual weight and height and all of the usual stuff they do. This time, when the doctor came in, she showed me that not only had Logan NOT grown, in regards to weight and height, he had lost weight and he had not grown a single centimeter since he was 1 year old. She then proceeded to diagnose him with "Failure to Thrive". I had an idea of what failure to thrive was, but I had no clue that they still diagnosed children with it. I knew that Logan was a small child. He has always been. Due to the birth defect that he had in utero, this was not something that was a surprise to me. He was only 5 lbs, 15 oz when he was born, which, for a full term baby, is pretty small. So I knew that when he was weighed at doctors appointments, when they told me that he was small and told me that he was less than 1%, the thought always crossed my mind, well, he started behind the scale, what makes you think that he would catch up in his first year of life?

But the Failure to Thrive diagnosis isn't what threw me for a loop. Our pediatrician referred us to a GI doctor, to make sure that Logan doesn't have any metabolically wrong with him. When we first saw the GI doctor, he did a round of blood tests, including allergy panels and such, to get an idea of where to go from here. Only problem? All the tests came back normal. No allergies, no mysterious blood work, no fat in the stool, no iron in the urine, ALL NORMAL. Ok... so what is next? We went back to the GI doctor, and he suggested seeing an allergist and a nutritional counselor, after I had mentioned that Logan was having a reaction to dairy products. Logan would get these HORRIBLE diaper rashes, consisting of open sores the size of quarters that engulfed his butt and his genital area, diarrhea, and vomiting, after ingesting dairy products. After my suspicions of Logan being allergic to milk, our pediatrician and the GI doctor referred us to the allergist. That appointment was today.

I was so anxious last night about our appointment. For me, this was a make it or break it kind of appointment. If Logan was allergic to dairy, then we had at least part of an answer and how to fix it. If Logan wasn't allergic to dairy, then  we were back at square one, with absolutely no answers. After Logan had a SEVERE allergic reaction yesterday, I decided to take pictures of the reaction and show the allergist. He looked at them and stated that they could possibly be related to an allergy. (WELL DUH! Why do you think I am here?? The view? I don't think so....) He asked if I had time to do the testing today. OF COURSE I DO! I don't care if I have to sleep here for the next 12 nights. I will make time!  So he proceeded to take us into another room and set us up to do the allergy testing. He did every kind of allergy test you could think of. He tested Logan for pollen, dog, cat, mold, cockroach (yuck), milk, soy, peanuts, shellfish.... EVERYTHING except the kitchen sink. At first, when I noticed the tests getting nice and red, a part of me was thrilled. Wow, we have an answer. I know that sounds sick and twisted, but for someone who has been to over 10 doctors since Logan was born, any answer at this point I will take. The nurse came back in about 20 minutes later, when the test was over, she came in an examined Logan. She looked, she stretched, she scratched, she poked, she did everything. In my opinion, everything was nice and red, and some even had hives. She then walked over to her chart, and proceeded to tell me the worst news yet. "Everything came back negative. He isn't allergic to anything". Um, what? Maybe you need to get your eyes checked lady. This one is red, that one is red, this one has a hive. OH LOOK, this one has a hive AND is red. She proceeded to tell me that it needs to look a certain way for it to be considered a positive test. Oh crap. Now I am back a square one. She told me that Logan could possibly be "sensitive" to dairy, which means he can tolerate it at low doses, but when he has a massive quantity of it, it could trigger a reaction. That wouldn't show in the poke tests that they did.

As I walked out of the doctors office, all I wanted to do was cry. Not because I was sad that he wasn't allergic to anything. I am thankful for that. What I wanted to cry about was all of the frustration. I have seen so many doctors, and not a single one of them have any answers. The nutritional counselor said Logan is getting all of the calories he needs a day, but for some unknown reason, his body isn't breaking down the food properly to allow him to absorb the nutrients in his food. Logan isn't the first, and regretfully not the last, child to be diagnosed with Failure to Thrive. Why am I having so many problems trying to get someone to take some time and figure out what is wrong. One doctor pushes me off another, who pushes me off on another, who tells me to go back to the two who I already saw. At what point do I just give up?

When we saw the nutritional counselor, she stated that when she looked at Logan, she wouldn't think that he was a child that was diagnosed with Failure to Thrive. Most children with this diagnosis are gaunt, pale, lethargic and overall not looking well. Logan is none of those. He has some chub to his cheek (but none to his waist), color in his cheeks, enough energy for 2 people, and overall a healthy little boy. He is just small. As I was driving home from the allergist this morning, filled with disappointment and frustration, I wondered if I should just give up.  Give up going to doctors, and just maybe accept the fact that he will be a small little boy, and I can deal with that. I keep trying to tell myself that we will all look back at this when he is 16 years old and the line back for the football team, being 6'0", and weighting 250 lbs. But for now, he is a 20 month little boy, who is 30 inches long, and 18 lbs. I get annoyed when people walk up to me when I am holding Logan and ask how old he is. When I tell him that he is 20 months old, I always get a surprised look like "Oh wow! He is so small!" Don't you think I know that?

Well for now, I am still deciding what to do? I moved up my appointment with the GI doctor, from 3 weeks away, to next week. I am done being nice. I am willing to kick some butt and take some names. If I thought for any second that I could march down to Children's Hospital of Los Angeles and meet with the best doctors I could find, and get some answers, then I would be down there marching on someones desk. But I know, that I wouldn't get any other answer than what I am getting right now. So I wait for the doctors that I have been referred to, to get up off their lazy butt and help me figure this out.

Unfortunately, the next step for us is more testing, some of it pretty invasive. As a mother, it just kills me to hold down my son, who is already terrified of doctors, and hear the screams and see the tears rolling down his sweet little cheeks, while some nurse performs a test, that will most likely come back normal. If I could do these tests for him, I would. But I know I can't. So I sit there and hold him, and sing to him, and be strong for him, because that is the ONLY thing I can do. I can't take the pain away, I can't make the test go any faster, I can't do anything but sit there and tell him how strong he is, how proud of him I am and how much I love him.

So the battle continues. More doctors, more tests, and less answers. But I do this for one reason....

For the smile of this little boy. Hopefully, he will start to feel better soon.