The Fam

The Fam

Monday, February 3, 2014

Hemihyper What??

Oh Mylanta, it's been a while since I've posted. I feel guilty for not even posting about the holidays, but I'll sum that up by saying that they were magical. Finley's birthday was last month, and I was pretty emotional about her turning three. It just seems like three years went by way too quickly. We posted her 3 year photos on the photo blog here. (I know that doesn't sum up the past several months at all, but it does sum up the past month and a half up to last week. ;))

Last Wednesday I took Finley and Fisher both to see Dr. Watts for her 3 year checkup and his 9 month checkup. We absolutely adore Dr. Watts, and I always love seeing how my kids compare in the percentiles. I had been looking forward to the visit for a few weeks. When she first came in the exam room, we visited about Finley for a long time and then she did her exam. (75th percentile for weight and 90th for height, by the way.) Everything checked out great and she wasn't due any vaccines. (Yay!) Next up was Little Man's turn. We visited about him for a while, as well. He's not "cruising" yet, which she wants him to be. He's also not crawling yet, but she isn't that concerned with that. She told me to do "bootcamp" over the next month and try to get him cruising. After the bootcamp talk, she examined him. (50th percentile weight, 75th height, and 100th for his head.) When she examined his hips and legs, like she does at every visit, she looked at me and I could tell she was concerned. "One of his legs is bigger than the other one", she said. "It's longer and it's bigger. Look..." I felt my stomach drop a little and I instantly saw what she was talking about. His left thigh is much chunkier than his right, and it also looked about half an inch longer. She wanted to send him to Orthopedics. Since we already have an Orthopedist for Finley's hip dysplasia , I asked her if we could stick with Dr. Jason Kennedy. I told her that in fact, we have Fin's yearly followup next month. She said, "Okay, I don't want you to wait that long to see him for Fisher. I want you to see him as soon as possible." This kind of freaked me out. I asked her what we would be going to him for, exactly. She said we'd do X-rays and find out why his leg is bigger. I left the appointment a little shocked. It had been such a good visit and exam for both kids up to the very end. I felt like I had more questions, but I couldn't figure out what they'd be. I texted my family from my car in the parking lot and then I started to silently cry behind my sunglasses (silently for Finley's sake). I gained my composure and drove to my mom's house. I thought about it for the rest of the afternoon, and I anxiously awaited a phone call from Cook Children's Orthopedics. Hooper called me to tell me that they called him and set up an appointment for February 3 at 10:30am. That seemed like a long time to have to wait without knowing much, but just like the motto at Gigi's Playhouse (my mom's) "You get what you get and you don't throw a fit".

I went to dinner with my girlfriends, and when we were in mid-conversation my cell phone rang. It was Dr. Watts. "Mrs. Hooper?" (I always think it's weird that she calls me Mrs. Hooper because I love her so much that I feel like she's my friend.) "Yes." I said in a confident, but anxious tone. "I talked to Dr. Kennedy. I see that you have an appointment set up for Monday. He doesn't think that his leg is preventing him from cruising or walking, so continue to do what we talked about. But after speaking with him, I'm also going to send a referral to Genetics." I didn't like the sound of that, but I went with it. "And what will that tell us?" "Well they'll go over him with a fine tooth comb. You'll be there for several hours, and they'll ask you all kinds of questions. They'll be able to find out if he has any type of syndrome." I definitely didn't like the sound of that either. Here I thought that this was just an orthopedic thing like the hip dysplasia with Finley, but now we're talking that it might be much, much bigger than that? I got off the phone with her and broke down to my friends.

 Later that night, I was laying on the couch and Finley was sitting on top of me. Hooper was putting Fisher to bed, and I googled the situation (which I shouldn't have done). I found some scary things about tumors in the abdomen and my insides started to feel weak. Just then, Finley rubbed my arm and said, "Is my brother gonna be okay, Mom?" I have no idea how she really knew anything was going on since I hadn't cried in front of her or acted very scared about anything. I told her that he'd be okay and I put my phone down. I instantly regretted googling, but I couldn't UNread what I had just read. Tumors?? I prayed about it and I went to sleep and surprisingly slept very well that night.

I went to work the next day and broke down several times. I called Dr. Watts and asked her if she still felt like Fisher's hernia near his bellybutton was still a hernia. I explained that I had googled it, and read some scary things. She immediately got onto me for googling, and then said that she still believes it is a hernia. She pretty much said that we don't know what we're facing until Monday, and to hang tight until we know more.  Whatever it is, we'll face it when we know. Sooooo, for the rest of the weekend I gave it to God and tried not to stress too much. I got some good sleep every night and today was finally appointment day.

We waited for about thirty minutes in the waiting room, and Dr. Kennedy came into the exam room pretty quickly. He measured the length and the circumference of both legs. The left leg was 31 centimeters long and the right leg was 29.8. The left was 24 centimeters around and the right was 22. He talked to us about different things that this could mean. He used a lot of big words and said a lot of things that I didn't understand. He mentioned something about the heart pumping more blood and the leg growing because of that, but the words he was using were so big that I didn't quite grasp what he was saying. He said he didn't think that Fisher had that, so I wasn't that concerned with understanding it. After we did the X-rays, we visited more and he confirmed the measurements. He was really comforting about everything, and he told us that more than likely what Fisher has is Hemihypertrophy. This is what I had read about on google, and this is the one that is tied to abdominal tumors. He said that he has 9 partners, and none of them have ever had a Hemihypertrophy patient that had a tumor. The difference in Fisher's leg could remain the same, or the left leg could continue to grow faster and larger than the right. I pray that it doesn't grow any faster, and that the difference is always what it is now. He put in an order for a renal ultrasound, and he explained that we will probably do renal ultrasounds every 6 months or so for his childhood. This is to monitor for the tumors. He said that when we go to the Geneticist, they'll be able to confirm that it is Hemihypertrophy, or let us know if it's something else. Basically, we are now waiting for the first ultrasound. They should call us soon to set it up. We have an appointment with Genetics for April 29th (his first birthday). We are on a waiting list to see if we can get in any sooner. I can't stand the thought of spending his first birthday at a doctor's office doing lab work, exams and a thousand questions. Dr. Kennedy will continue to see him for the duration of his childhood, although I'm not sure how often. Luckily (or maybe not so luckily?), I will see him again next month with Finley and I can ask him any additional questions that we have. One thing that he emphasized was that if we could only take one thing away from the appointment, he'd want it to be that we don't raise Fisher waiting for something bad to happen.

I appreciate continued prayers for Fisher. Specific prayer requests are that his left leg doesn't continue to grow faster and larger than the right, that he doesn't ever get any tumors, that he doesn't have any major issues from the difference in the leg length, and that he doesn't have some other syndrome that is even worse than this.

Hopefully I will update after we know more. Probably after the sonogram and the appointment with Genetics.

Here is a picture that shows the difference in his thighs. Sorry about the wipie. :)



Here he is at the appointment today. 

And here's a picture from last Wednesday, before his appointment with Dr. Watts.