Sighing hugely.
Dan and I took Elijah to see his genetics doctor this morning for a follow-up visit. We hadn't seen her since April, so we caught her up on all that has happened over the past few months. Elijah's ENT doctor had spoken with her since he saw Elijah in his office last week and he shared some concerns with her. His ENT doc feels that Elijah might be some form of a "little person" based on his short arms, big head and short stature. His genetics doc disagrees with him. She thinks that although Elijah is indeed a very short person, he does not look disproportionate.
She wants to run three more tests. A urine test to check...I honestly can't remember. A blood test to check his growth hormone and an xray to look at his long bones to rule out little person-related stuff.
After these tests, for crying out loud, LET'S LEAVE THIS KID ALONE! And she agrees with that. Let's allow him to grow and develop without all of the stress of this constant testing. And to be honest, there really isn't much left to look at.
She does feel that she is "missing something." That there is something to explain Elijah's anomalies that we just haven't figured out yet. Who knows. Maybe there is, maybe there isn't. And if there is, I know that discovering what exactly that whatever is, could possibly help us to understand Elijah better. For now, though, I just want him to enjoy life and I want to allow him to be as doctor- and hospital-free as possible. Heart stuff is on the horizon, so a break before then would be nice. Dan will take Elijah back to the hospital on Monday for the three tests I listed above. After that, I'm putting my foot down! We are done with tests for a while.
After the appointment this morning we had a very tearful drop-off at daycare. It was pretty awful, complete with gigantic tears and hiccupy cries. If Elijah had any say, he would spend his time with only Mommy and Daddy, 24 hours a day, 7 days a week. He has regressed socially quite a bit since his surgery in June, so we have been pushing Elijah a bit in that area. By "pushing" I mean taking him to daycare almost every weekday so he gets used to being around other people regularly. He is definitely a kid who needs a little social "pushing." As a child I was like this as well (to a much greater degree), so the apple doesn't fall far from the tree!
We have a super fun weekend ahead of us! We get to see my dad and stepmom and many other family members on my dad's side. Elijah is sooo excited to play trucks with "Amps" (Gramps) and to sing songs with Grammie.
11 comments:
Ugh. I agree with the school of thought that this little man has had enough tests!! Praying that this next round gives some definitive answers!
Hope you guys have a great time this weekend! Sounds like there's some fun times planned! Give Mr. Elijah some love from us!!
That's a good stance to have.
little person...really? I don't see it either.
You can just call him a digeorger if you want...they're little guys! He can join Isaac's club!
How fun that you're seeing family this weekend...Elijah will be on cloud nine!
I just need to break bad and buy photoshop..I'm totally missing out!!
Heres to hoping that there will come a time for Eli not to have to have any more tests done..ever!!!
Hugs to you all..
Elijah's genetics doc is right, he does not look disproportionate. There's a saying in the UK, "all good things come in small package".
Elijah is a beautiful, smart, sweet and cute boy as always!!!
Elijah deserves a good break away from the hospital and all those tests.
Enjoy the weekend with your family!
Love to you all xoxo
I am a geneticist and I have to admit that I have wondered if Eli had one of the rarer forms of little person. Some of them start with the body all well proportioned but over time the body grows at different rates.
I am also of the mind that enough is enough. Being able to put a label to something is nice, but it won't really change anything. He is still the cutest, sweetest little bug!
Megan,
Do you purposely try to make me cry with every update or am I just an emotional basketcase?! I can totally relate to what you're feeling about this. Once we were given Emma's genetic diagnosis, the doctors really didn't have any information to share with us. We actually found more info on the internet than they did, and THEY wanted copies of what WE had found! (Crazy, huh?)
Anyway, our visits with the geneticist have never really proven to be beneficial. I always feel like Emma is some sort of a science experiment to them, as they take pictures of every part of her and talk about asymmetric features and abnormalities. I want to cry out, "This is my beautiful little girl! She's perfect to us and God made her just as He intended."
I know they want to learn and I want them to be able to share info with the next poor family that's given the news that something's not quite right with their baby. But there are times when enough is enough....and your child's needs have to come first.
I completely agree with you...the test results won't change your love for your little boy one bit. He needs a break, and he needs to feel "normal."
I think he's absolutely adorable, and I pray that all of the testing comes back fine, and that your sweet little man is able to go on with life....even if it is on "Elijah-time!" :)
Give that sweetheart a big hug from us! You guys are always in my prayers.
Lots of Love,
Wendy (& Emma, too!)
Wow-too much going on. I completely agree that Elijah has had enough.
Hoping you all have a wonderful, fun weekend with family. You all deserve it!
Sorry Megan, sounds overwhelming.
I'm with Kathy, you can forget the tests and just be an honorary DiGeorge family :)
I hope that if there are answers to be found that they will bring you peace and yield some new information that will help Elijah.
Thinking of you!
I hope they are satisfied with the results and leave him alone.
Sounds like a fun weekend instore :)
Poor Elijah has been through so much, They just need to leave him alone for a couple of months :(
Hope you all enjoyed your weekend.
Hugs coming your way.
I'm so sorry Mr. Elijah has to go through more poking and prodding. On a brighter note, you have not deprived him of any little boy fun, either. You've shown him so much of the world, already. And, it's awesome that you're pushing him in the socializing department. I cannot imagine you as a timid one, though. You are always so vibrant and full of life in your posts.
I, too, am concerned about Justin's height. I still need to see a geneticist, but am putting that off until after the summer. I agree with you in that our little boys should be allowed to just be.
Keep fighting, Mama!
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