At Elijah's PT session on Thursday, his therapist took off his shoes and socks and rolled up his pants and watched his legs, feet and ankles really closely as he walked around pushing a little grocery cart. After watching him for a while, she told me she thought it would be best for Elijah to get braces. His little ankles turn inward and his feet turn out and he doesn't bend his knees when he walks. He just isn't getting the support he needs in order to walk properly. She said we could wait a few months to see if it gets better, but really, why wait. She feels that giving him more stability with some AFOs (ankle foot orthotics) NOW could really help him learn to walk more quickly. And it is time. He needs to start walking here, soon.
Sometime in the next couple weeks we will see an orthotist, who will take custom molds of Elijah's feet and legs (should be a fun experience). Most likely the braces will need to go up his entire calf, but the orthotist will be the one to determine that. We are hoping that this will be a step toward getting our little man stable on his feet and walking. I think I just heard my back shouting for joy!
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Elijah has an appointment with his genetics doctor on Monday. We haven't seen her since Elijah was in the NICU two years ago. Since our (perfect) little boy was born with a handful of anomalies, and since he is still delayed in speech and gross motor, there is a possibility that he could have a genetic condition to explain everything. They ran all of the basic tests when he was a few days old, and the results from those were normal, but those tests don't rule everything out.
A lot of our little heart friends have genetic conditions, so please don't take what I'm about to say the wrong way. I am in no way dissing on genetic conditions and your awesome little babies.. I am a bit nervous about the appointment. I know that's silly because even if Elijah has a hundred genetic conditions and sprouts nineteen extra toes, I will love him just the same. Maybe even more, because I'd have to give extra love to all of those toes. It's just, I don't want another label to put on my little boy. We have gone two years believing that Elijah has this, this and this "wrong" with him. At this point, it would feel weird to put another major thing on the list.
Here's the thing that calms me, though. If God made Elijah with a genetic condition, then that is a part of who he is and we will embrace it fully. Elijah is PERFECT. No matter what.
11 comments:
First - as a therapist, I think it's great you're OK with the idea of AFOs. You should see a world of difference!
Second - I totally know how you feel about another label! Chase has more "labels" than I care to think about! He's my son and he has a name... he's not a condition.
Glad he's doing well!
oh...I'm jealous of the leg braces! I'm still begging for them..but, for some reason, they think he should stand before he walks (go figure).
You know...I don't like stinky labels either..but, the positive (if there is one) to finding a genetic component (like our digeorger) is that you'll know what (if any) delays or problems to look out for. It'll just keep you that much more prepared. We knew all the problems that Isaac COULD have while pregnant (thinking the possibility of digeorge was high)...and now, I understand why he doesn't talk, walk, eat...and we know what areas we need to work on.
ok...finished rambling. just don't worry your little head off!
and that other post was hilarious. I don't like looking back at my old posts...we were SO dramatic..."they bagged him", he's on life support".....please...I can't believe that we all survived it and we parents didn't have heart attacks (or...sorry if you are a parent reading this and you did have a heart attack!)
hope you have a super weekend Megan!
Hi Megan and men,
I know what you mean when you say you are sick of the labels. I have gotten to the point that I do not even tell people anymore how premature the boys were as I am sick of people feeling sorry for them. They are amazing little men and they do not need pity!! Those labels put me into defensive-mommy mode pretty fast :)
As for the genetic testing, I have always found that I can handle just about anything, but uncertainty. I think it is always better to get things figured out. That way you are better prepared and do not have to keep going through it. It would just drive me nuts that every week while in the NICU they were just convinced that Eli had some horrible condition, and then they would rule it out, and then move onto the next condition the next week. Better just to get everything figured out and move forward. It does not change anything about your amazing, wonderful, adorable, smart ( I could go on and on.....) little Elijah. And you will love him more. A test does not change anything. We are all blessed to know him.
Of course Elijah is your PERFECT little man always!
I wish Elijah the best of luck on Monday at the appointment with the genetics doctor.
Lots of love and hugs to you all xoxo ...
Have a good weekend!
First AFO's....little Miss Grace had those and was walking in no time...well by 2ish anyway. :0)
*I know it's hard though...I promise*
Genetics...I agree with Kathy. You know Grace is all..."abnormal" with lots of little labels. I would prefer we find ONE umbrella to pile them under...to be able to be watchful of certain things and have a general "plan of attack". I know it's tough though. Also kinda funny...as you are walking into yours after 2 years...we are walking out. No answers...equals no more *wasted* time in your office! :0)
Good luck momma...thinkin of ya!
I'm gonna have to agree with everyone else - they beat me to the punch (LoL)!!
Hope you have a wonderful weekend!!
no matter what.
we love you, dan and eli...no matter what.
always,
p.d. and j.
We are in the same boat about with Arianna regarding getting some kind of braces. We see ortho next week to discuss getting some SMOs.
As far as the genetic testing goes I completely understand what your saying. I do have to agree with Kathy though regarding knowing what to look for. I wish Arianna did not have DiGeorge but since she does I know what to look for and get her the help she needs.
Love you guys!
He certainly is perfect love. And I have leg braces as a toddler and not only did they work wonders but My mom said I didn't notice em one lil bit!
Wow, I'm surprised to read about so many heart children needing leg braces. His ortho still thinks he doesn't need it. I hope Elijah will get his if it it will help him with his walking.
As for genetics..I still need to make our appt. I also prefer to know than not, but like you, I am afraid to place another label on my son. Maybe that's why I haven't made the appt. yet? I don't want someone to tell me what else is wrong with my son...
Elijah is PERFECT. Give him kisses for me.
He is PERFECT!!!! They all are. XOXOXOs to the little man ;)
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