Genetics Appointment

There's so much to catch up on, but before I get into a long post, enjoy a few photos from the past several weeks that don't really have a certain area in this post that they belong. 
 Finley & Fisher at Hooper's show

 Fisher LOVES Beckett. And I love that he actually puckers up for kisses. 

My mom sent me this one day. The swing put him to sleep. :)

Bennett, Elliott, Beckett, Finley & Fisher on Easter

For 3 months I kept my cell phone on vibrate and kept it in my pocket at work. I was anxiously awaiting a phone call telling us that there had been a cancellation, and we could get in to see the geneticist sooner than April 29th. That cancellation phone call never came, and we had to take Fisher on his very first birthday to the genetics appointment. We really didn't know what to expect, but we had hoped for were some clearer and firmer answers regarding Fisher's longer leg. 

The appointment started out with a nurse asking us about our health and our family members' health history. She drew out a family tree with a little circle and square stencil. After all of the questions, Dr. Kukolich came in. I liked her immediately. She took all kinds of measurements from Fisher and plugged them into her computer. She showed us where he is compared to other children his age. His weight is average, he's a little tall, and he has a really big head. She told us his head measures off the chart, but that she can tell by looking at Hooper that he gets that from him. :) She even pulled out this cute little ducky measuring tape and measured Hoop's head. Then she plugged his measurement in the computer and sure enough, his is off the charts, too. She confirmed that Fisher has hemihypertrophy, and that it is only in his leg. She doesn't suspect that it'll continue to grow faster than the other. (Sidenote: we've been pronouncing it wrong this whole time. To quote one of my favorite movie quotes that comes from a movie I remember absolutely nothing about except this quote from Mike Myers, we were putting the "emPHAsis on the wrong syllALble". It's pronounced hemihyPERtrophy.) We asked her several questions about it, and she was super informative. She said that the odds of us having another child with it are very low. (Hoop would then chime in, "also, the odds of us having another child at all are very low".) Dr. Kukolich follows about 6 children that have hemihypertrophy currently. In all her years, she's only had one that developed a Wilms tumor, and they caught it early and all was well. We will have to have the renal ultrasounds done every 6 months, and lab work every 6 months. We did an ultrasound 3 months ago, and did the lab work at this visit. So we will be keeping an eye on things every 3 months, even though we are doing them every 6. She said that she actually does have a patient right now that had a Wilms tumor and his doctor hadn't ever caught that he had hemihypertrophy. So he went to the hospital with the tumor, and when they examined him they were like, "wait a minute. He's not symmetrical." That just makes us even more thankful for Dr. Watts and how awesome she is at catching everything so quickly. The whole appointment was really good. I left feeling a lot better about the whole situation. We had to leave from there and go to Cook's to get the blood drawn, and that was so awful. Poor little man was so sad and it just didn't seem right to have to get poked by a needle on your birthday. After it was all said and done he did get his first sucker though. Cheered him right up. 
The three of us went to lunch afterward (Finley was at my mom's), and it was really nice to get to spend a lot of undivided time with him. We have never spent that much time with just him, and I felt like he deserved that on his birthday. We went to Target and picked him out a new toy and he had so much fun. Other than the blood draw, it was a really great day. 

Two days later the nurse called me about the lab work. She said that the specific panel they run is a tumor indicator. It's called Alpha Fetoprotein, Tumor Marker. The normal range for a 12 month baby boy is 0.5 - 7.9.    Fisher's was 11.3. She said that Dr. Kukolich isn't TOO concerned with it, but she'd like to repeat the lab work in 3 months instead of 6. When babies are born this number is very high, and as they age it gets lower and lower. She's thinking that maybe his just hasn't dropped to normal just yet. (Pray that she's right!) 

We went to his 12 month checkup yesterday with Dr. Watts and everything is great as far as his normal stuff. He says hi, mama, and dada. And recently he has called a banana "nana" twice. He's getting closer and closer to walking, but he's not there yet. He's still the sweetest little baby I've ever known. He was giving me so many kisses while Dr. Watts was asking me questions that I could barely talk to her! 

All in all, hemihyPERtrophy is just something we've got to deal with. It certainly doesn't even compare to some of the things that families have to deal with, so I feel a little silly for even acting like it's a big deal at all. So my kid has one leg that's two centimeters longer than the other, big deal. We've got great doctors and specialists that are keeping a close eye on him, and everything will be fine. 


Liliana said…
Hi, can you send me your email so se can talk privatly?
Hi, we had the same diagnose in Jan 2017, it would be nice to hear how it’s going on with you now. We live in Finland and haven’t found no one to chat whit in here. Could u send me a private message?

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