We had another PT visit today and Elijah was MAD. He was a tired boy and screamed through the entire thing, so not much progress was made. His PT gave me a printed assessment of where she thinks Elijah is at developmentally. He is right on schedule with cognitive and fine motor skills, but is in less than the 1st percentile for gross motor skills (neck strength, arm strength, rolling over, pushing himself up, etc...). I knew his surgery had caused him to be behind, but I had no idea he was this far behind. We have been working with him SO HARD every single day. It is a constant, tiring job, so it's frustrating to know that he still has such a long way to go. His surgery and recovery came at a time when it was really important for him to be on his belly, about the 3-month mark. Oh well, we will keep working and eventually we'll get him caught up! Soon here I have to go back to work, so I'm hoping we can do some major catching up before then so we won't have to expect our daycare provider to do all this work for us.
His flat spot is better, but still flat. Depending on what Eli's pediatrician says next week, we may be heading to the plastic surgeon to get fitted for a helmet.
Elijah has been so aware and alert lately. He does something new every single day. Yesterday he figured out how to blow peas out of his mouth and spit them all over Mommy. Today he starting saying, "Bob," over and over. Hmmmm....I wonder who Bob is? The last friend he couldn't stop talking about was, "Aboo." It's so fun to see him grow so quickly and to see what each new day brings. He's such an amazing little baby.
14 comments:
Yeah for Eli with all the good stuff. He will get caught up soon enough with all the physical stuff--if it makes you feel any better, Leah did not do anything fast and she was the picture of health--just LAZY. I am sure that Eli will get the hang of all the physical stuff soon. He is an adorable little guy.
It sure seems like you are doing everything humanly possible to get him where he needs to be. Hang in there!
Take care,
Samantha
Hi again--Megan, do you mind refreshing my memory on Eli's heart--is he being treated as a single ventricle or is his right ventricle still functioning? I have read through your blog a number of times, and to tell you the truth, I am being lazy right now...also, thanks for you kind words on my other site, I sure do appreciate your kindness.
All of Elijah's ventricles are fully functioning. His heart issues are with his pulmonary atresia, VSD and MAPCAs.
I understand that by 4th grade our kiddo's should be good ... I can't even remember who told me that....
poor little Magoo is 27 months old.. and at only 9 to 12 month communication level ... he understands us.. but can't say anything to us...
I cried... even though I KNEW IT..
but, makes me sad.
We'll get them there girl ...
it'll just take us a little bit more time....
Go Eli, go! I just want to say that even though he is in the 1st percentile that he can come a long ways in a short time. All of our doctors were absolutely positive that Jacob would have major delays - especially after the age of 1. He has proved them wrong time and time again. I am sure Eli will get the hang of it too - though I know that not everyone is as lucky as we are with our Jacob. I just mention it to give hope - it is hard work and scary though. You guys are in our thoughts and prayers always. :)
So you have been told Eli is in the 1st percentile but, you know what - he is here, he is a miracle and he is going to prove to them just how strong he is. Like Jacob's Mommy - I know that we are very lucky and that although they expected delay's, Evan has proved them wrong and I say these things to remind you there is hope and I'm praying for Eli.
You're so right. Now I feel horrible for complaining about his delays because he IS a miracle and we're so lucky that he's so healthy and smart and HERE with us.
I don't think you need to feel horrible for complaining...as a matter of fact, I did not hear complaining, I heard genuine fear and concern by a mother about her baby boy. You are amazing and you are doing what any normal mommy does, and that is WORRY! We are very lucky to have such miracles in our lives.
I felt lead to come back here today while having some alone time and reading and I'm glad I did. Megan I did NOT hear complaining but a mother who was hurting for what her child might have to face. The original reason I came back today was because of the following line in the book I'm currently reading and wanted to share: "I hate what it will mean to him. It'll mean he has to try a little harder, that sliding by won't be good enough for him. It may make him better and stronger, I hope it does. I think what you've gone through has done that for you. Easy roads are not always the best ones." That's the way I feel about so many heart families I have met, like this club we didn't willingly join has made us all better and stronger.
Meg - You and Dan are such wonderful parents. The three of you will have rough roads to travel, but always remember: If God brings you to it, he will bring you through it. Never lose your faith in God, yourselves and Eli.
Hugs and Kisses to Eli
Tammy
I'm happy I came back too..
but .. I do think it's natural for us to want things to come easy for them....
I'm with you on this sister!!! Our Mr. Isaac is still in the bobble-head department!!! But, look on the bright side...we can hold them down and smooch on them and they can't get away!!!! We have more time to cuddle with them before they have the strength to crawl out of our arms....
Eli's only a month older than Isaac...so, email me anytime and compare where he's at...I'm sure we'll be at the same place. That's awesome that Eli's eating baby food already!!! Isaac has forgotten how to drink out of a bottle! (I think i'll skip it anyway...and jump ahead to the sippy cup!) Eli's laugh is SO cute!!! Something must be in the air...it's GRUMPY baby day!
Take care...and enjoy the baby days...they grow up SO fast!
Kathy
Thanks for the perspective, ladies. It's so nice to be walking through this with you and getting insight from all angles. We're so grateful for all Elijah has accomplished. Thanks for your support!
We know Eli will get caught up in no time! You guys are doing a great job with him. Pretty soon he'll be off to the races and scooting all around the house.
Look forward to seeing you again soon!
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