Yesterday we made the 3hr trek AGAIN to Primary Childrens Hospital. With Ryder and Noah in tow, {Ridge stayed with grandma} we made it {barely, but thats a whole different story...}
We went to see Dr. Randall, {Ryders Ortho doc for his legs}. No change, good or bad for his legs. His left leg hasn't caught up any to the right leg, but it hasn't gotten any worse {bowed} either. So the next step is to schedule a surgery date for August. Late August more than likely, so he is hopefully off of the steroids he is currently on for the Minimal Change Nephrotic Syndrome. {more on that later} The plan is to place an "8" plate on the outside growth plate of the left knee to straighten it out more {Again}, and to remove 2 of the screws from the "8" plates that are on the right knee to allow the growth plates to "breathe" so they don't forget how to grow. Phew!
Ryder also has an inguinal hernia. I asked Dr. Randall if we could possibly speak with Urology and be able to fix that at the same time we do the ortho surgery in August and he didn't see why not sooooo...now we schedule an appt. with a Urologist for sometime next month. On the bright side, Dr. Randall gave me the name and number of the bes....well not the best he said, they are all good, which I am sure they are {but he is probably the best}. He said this Urologist is always booked way out, but to "drop" his {Dr. Randalls} name if I have too and he will get us in!
As for the Minimal Change, it hasn't come back thus far and things are looking good. Starting the 1st of July we are starting to wean him off the steroids and hopefully be done! Please pray for no relapses. Poor kid just can't seem to catch a break!
On this visit, I was also able to visit a good friend and fellow NICU mom, Shelly. I was able to go and hold her little Brinnlie who is still in the NICU at Primarys. What an awesome visit! Thanks Shelly! I hope you are able to bring her home soon! She looked so good. I was hoping some of Noah's old primaries were working, but no one was Darn it! Oh well...
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Poor kid and poor you...however you are all amazing and strong! I love the pic of Ridge on the tramp with his big wheel...so funny. Noah is quickly catching up to Lucy. Can't wait for them to be crazy 2 year olds together!
ReplyDeleteditto with Abby's comment.(except the part about Lucy, can't really say that) Too bad I wasn't there I would have loved to see you.
ReplyDeleteIt was So fun to see you! I'm glad we got to catch up a little---your boys are way cute! I wish the best for Ryder. If it's not one thing, it's another, right? And, thanks so much for the outfits and diapers and the little sign---they are all so adorable and I can't wait to have Brinnlie model them all!
ReplyDeleteTina! Home girl! Darling headband wearer, super mom extraordinaire! Don't be mad, but this is the first visit to your blog. :( Sorry. Look at little Noah! Love the darling picture in the boots. Love it. I still think he and Gabe kind of look alike! You are amazing. Still battling for your kids. If it is at all possible, it would be great to see you when you come down again. Or another time. Unfortunately it looks like you will be coming to my neck of the woods more than I would come to yours. But I swear if I am ever near your town, I will call. Just get your horses ready. :) Your family is so sweet. Despite all the craziness of our babies being in the nicu, I'm so glad I met you!
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