Joint Hypermobility Syndrome & some prayer requests

So if I ever get around to writing their 12 month post (giggle) you will read that our Pediatrician had a Come-to-Jesus meeting with us about Caden's development. He had wanted us to explore Physical Therapy with Caden at his 9 month appointment b /c he was behind in some gross motor skills. Well, when I tried to go down that road, the places they had recommended to us didn't take our insurance. $300 a visit? No thanks, I'll just google some therapy moves or let him learn it "when he's ready." That's what everyone kept telling us, " he's a twin, so he's going to be behind in areas, he will move when he's ready." So at his 12 month appointment Caden was still not crawling, couldn't sit up (from lying down) on his own, wasn't dreaming of pulling up and really didn't care to "walk" with us holding him up. I tried that for a while since so many moms have told me their child went straight to walking etc... But considering how strong Caden has always been and how much interest he showed in movement when he was little...I think I knew something was "off" now that he stopped progressing since about 6 months. hmmmm 6 months alot of things happened and when we stopped to think about it, alot of things started adding up.

Fast forward a bit...our Ped found his "2nd choice" facility and referred us to them since they would take our insurance. We went in to have an evaluation and we thank the Lord that he had a great Therapist from the start who immediately picked up on the problem. I'm pretty sure she threw out the "syndrome" word when we were together, but I was overwhelmed in a tiny room with Caden screaming when she tried to work with him and trying to keep Jenna out of the way. (They wanted and continue to want me to take Jenna to all of his sessions since that is his natural environment and he is already "stressed" in the new environment with new people etc...) But it wasn't until my Mom found an article perfectly describing Caden that it connected that this is what the Therapist was saying! After I thought about it, I panicked a little with my mind going all sorts of places with things wrong with Caden. But the more we researched and the more I talked to his therapist, we are going to be just fine with alot of patience and hard work.

Joint Hypermobility Syndrome basically means that Caden is extremely what we call "double jointed." You have to have 4 or more joints greatly affected to have this and bless his little heart, his elbows, ankles, knees and hips are all very loose. Since his joints have more room to move, he technically needs more muscle than the average baby to stabilize these joints. And since we don't have Popeye as our son, that is why he has been struggling. The therapist said at some point, he probably tried to start crawling, supporting his weight with his arms, tried to sit up etc...but b/c he didn't have the muscle to do it, he either got frustrated and said "forget it" or in some cases, it can be painful when your joints move, buckle and bend. Then came the kicker: kids with JHS almost always have ... reflux. Our dirty little enemy all summer! Turns out if you have an issue with your connective tissue being "loose" and not supportive, it affects all of your connective tissue...even those in your Esophagus! Kids with JHS do not have esophageal tissue that is strong enough to open and close thus causing reflux. ha! And there is the missing puzzle piece.

So, to make this even more dramatic, after our Evaluation where we feel good about his therapist, his treatment plan etc... our Insurance calls and says they in fact, will NOT cover PT for children under 3. What? Momma goes into protective mode here. After some fussing and alot of yelling from the Therapy facility, our insurance " graciously " gave us 8 sessions, or one a week, for the rest of the year. Then, its out of pocket or go through the state program *if* Caden qualifies. So it has been a bit of a roller coaster, but this basically forces us to do 1 session a week and me doing most of the therapy each day at home. Now, I didn't go to school and degree in PT for a reason people! I don't enjoy it! This is where we ask for your prayers in a few matters:

1- Please pray for Caden to catch up developmentally, and specifically, by the end of the year if that's what the Lord has for him.
2- Please, please, please pray for my patience and nerves. Caden cries alot the first day or two when we work on homework b/c it frustrates him and/or hurts a bit until he gains control of that muscle.
3- Pray for our tolerance as we start the road of going through the State program. We are starting paperwork and evaluations in case Caden needs help after December...just like most state and government programs, it takes like 2 months for anything to get done! Grrr
4- Pray for us each Wednesday..that is Therapy day. Caden comes home mad b/c they work on him for an hour and I come home discouraged thinking we haven't accomplished anything! It is hard for me to remember what we have accomplished when we just finished an hour of movements he can't do. :( And plus, you never come home feeling warm and fuzzy after hearing people talk about what your child can't do but should be doing...

I do want to leave you on a high note: after 1 session, my little boy is crawling! It was a horrible, torturous week, but he learned to crawl! We are now working on his pelvis movement and this week is our biggest task yet...pulling up! So we are thankful that God chose to give us a taste of victory in our efforts. We pray for successful weeks like this each week! Thanks for praying! And if you drive by our house and hear screaming, dont call the cops...its how we roll these days. :)