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Tuesday, April 30, 2013

Update on Kye

Yesterday Zach, Kye and I drove to Tallahassee first thing in the morning to have his follow up appointment. You can get caught up on the situation by reading this post :)

I've been trying super hard this past month to not worry, but it's kinda impossible. I did manage to sleep okay the night before and was just very comforted in the idea that we'd KNOW. No more wondering. We'd have answers! Good or bad, at least we'd KNOW.

Mrs. Charlotte came over first thing to watch Britt for us and we headed out! Kye enjoyed watching Cars on the way. We got there right when they were opening and waited our turn. They measured and weighed him first thing. He weighed 37.4 lbs and was 39.75 inches tall. Which means he grew 1/4 of an inch in a month! Pretty awesome if you ask me! Although Dr Wright said it didn't mean anything, it still made me feel a little better!

Right off the bat I was SO frustrated. The hospital where we got Kye's bone scan done didn't send the actual scan like the paperwork we gave them had instructed. And the hospital where we got his lab work done didn't send over ALL the lab results either. Grrrrrr. 

I guess they got it all worked out b/c Dr. Wright came in and didn't even mention any of those things. She went through the lab results and said "everything looks good except this one little thing here" Well, awesome. So instead of listening to all the "things that looked good" I just sat there in horror waiting to hear what didn't look as good!!!

She said the IGF-1 showed he is in the normal range, yet on the low end of that range. IGF-1 is the lab done for growth hormonal issues so it's GREAT that it's in the okay range but something she said we need to continue to monitor as she would like it to be higher along that spectrum and we need to make sure it doesn't drop below since it is so low. She also said that late bloomers would be in that same range Kye is in! Normal, but low! So it fits her hunch that he's just a "loyal son."

Something she said that really made me feel thankful that she's who we were referred to was "I'm sure the one thing you've heard about me is how I rarely will recommend growth hormone treatments." While I hadn't heard that about her, I'm thankful that she has that attitude about it. I do NOT want to go that route unless it is TRULY medically necessary. There isn't any data on potential long term effects of using growth hormones and I do not want my child to be an experiment! She said that some people when their children fall where Kye did will want to do the hormones and that they may have a case for it but that since he is in the normal range she surly wouldn't recommend it and most likely insurance wouldn't cover it either. Whew. I'm thankful!

She said the "funky" thing in his labs was his sedimentation rate. She said it was raised but that it could mean simply that he had a cold or allergy issues when they ran the labs. In fact we got the labs done right around the time of the Harlem Globetrotters so I know for a FACT that he'd had allergy issues b/c he was up all night coughing! But she did say that it could also be a sign of a million other things...including auto immune issues. She said more than likely though other labs would have come back a bit off as well if we were dealing with anything so she's not concerned about it at all.

Dr. Wright did a quick exam of Kye and said everything looked great. She said that she wants us to come back next year. She gave us forms to have him get labs done that will only be checking his IGF-1 levels as well as his sedimentation rate. She said she wouldn't have had us do labs just for the sedimentation thing but since we need to do them for the IGF-1 anyway that we might as well double check on that too. Which I appreciate!

She said to have the labs done two weeks prior to our appointment with her and to come see her prior to his 5 year check up at Dr. Griner's so she can fill them in on the situation. She also gave us forms to have him get another bone scan as well and notated them to have the hospital GIVE US the actual scan to bring to her!

She said that overall she still thinks that he's a "loyal son" and that he will be a late bloomer but we want to monitor it all and make sure especially that those IGF-1 levels are staying within that normal range. If they stay low that's okay, as long as he remains within the same percentile of growth he's at now. For his age he's in the 30th percentile (meaning if you took 100 kids who turned four on March 4th and compared them that he would be taller than 30 of them). And that with our genetics he should be more at the 50th percentile right now, so seeing him go up in that percentile would be a great thing!

Was the appointment the big sigh of relief I was hoping for? Not really. We don't know 100% without a doubt that nothing is wrong. That's frustrating! But like Zach said, she can't give us a 100% guarantee anyway. No dr ever can! All we can do is try our best to not dwell on this for the next year and pray that Kye continues growing between now and then! A growth spurt sure would be a blessing ;)

My thoughts on all of this are that I kinda wish we DIDN'T have so many medical advancements. More than likely Kye is FINE and IS just that "loyal son" who will be a late bloomer like his Daddy and Big Papa were. Mr. Rusty never had any bone scans. Zach never had any lab work done. These types of tests weren't around back then. And now we are stuck worrying about Kye simply b/c we have more knowledge and more tests that are possible to run! While I'm thankful we know more in some ways, I also wish we didn't know as much in others. It'd be nice to just look at Kye and assume "late bloomer" which is what we would have assumed ourselves anyway and not look at him and worry "oh gosh, will he need growth hormones? is something wrong?" 

My gut truly does say that he is OKAY and that he will be FINE. I also think this will probably be a yearly thing for us. If he is a late bloomer we won't really know until he hits that growth spurt and shoots up. So most likely he'll continue to fall in that lower, normal range on the IGF-1 lab. Thankfully all of this didn't cost us too much out of pocket (around $300 total for all the scans, labs, and appointments) so we will find a way to make it work if that's the best thing for him!

I am so, so thankful that it was overall, good news. I'm blessed with such a wonderful son and know that God will help us and guide us no matter what the outcome on all of this continues to be in the future. My prayer is that Kye just keeps getting taller this year and that we can hear great news next Feb (yes, I made the appointment earlier than a year...why worry longer than possible?). Until then I'm going to do my best to put this out of my mind and just ENJOY our sweet boy!!!

Thank you all for your prayers on this situation...while I don't feel 100% free of "mommy worry" I feel as good as I possibly can about this whole thing and trust that we are making the right decision in moving forward!

Also: Kye still does NOT know anything is amiss! Why tell him more than he needs to know? I plan on keeping everything very light and simple for him. When he gets that scan and labs again I'm not going to be making a big to-do about it. For all he knows, all kids go through this and there isn't any reason for him to think any differently! He played with cars during the appointment and didn't ask us any questions about it. I know he's a very good listener and may have overheard some things so, of course, I'll always be honest (simple, but honest) with him if he asks anything but I do feel the LESS he knows the BETTER about this situation. I don't want him to be insecure about his height when he doesn't need to be AND I especially don't want him worrying over anything that is most likely FINE and isn't something any of us can control anyway! So thank you for continuing to respect this boundary with him!

2 comments:

  1. I totally agree there are way too many test being done on perfectly healthy young and old and a lot of excessive worrying. I think some thing, especially things you can't change anyway, left unknown. Glad it all went well and sounds good really. You are right just to forget it and move on.

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  2. While I know it wasn't an "all-clear" visit, I still think this is WONDERFUL news. I know I've told you before, but I'll say it again - I think Kye is absolutely PERFECT (no matter the outcome of these tests later!)

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Thank you for sharing your thoughts! Reading your comments makes my day!



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