Monday, April 25, 2011

So got word today that Ryder's surgery is all the way in August!!! (Ruby's first birthday, 8/8/11) Why so far away you are probably thinking??? Because the DR's summer is BOOKED! He only does surgery once a week. Ryder's surgery takes approx 4 hours, so it is difficult to squeeze him into that already booked schedule. I am in the process of contacting DR to let him know that Ryder is in so much pain from his hips. Ryder daily will cry or complain that his "legs" hurt....his legs "scissor" or cross over almost constantly now..he hates standing...the weight on hips hurt him. It's getting worse daily, so I HATE to see him wait all the way until August for the surgery. We will see what happens! I am bugging them though : )
We will keep you all posted..if the date changes (HOPEFULLY!) I will post!

Saturday, April 9, 2011

First...I guess Ryder's surgery can happen anytime with about only a weeks we'll see when that is! I'm so nervous waiting for the letter w surgery date.
Next, I was so blessed to meet this wonderful family in the waiting room before Ryder's appointment with his Ortho surgeon. The kid was about 7 he also had a sister about 3 years younger (like Ruby and Ryder). This boy was SO much like as can be! he was so sweet! He looked at my mom and then Ryder and said, "does he talk?" my mom said "Yes he does." then told Ryder to say took a lot to get ryder to say hi to this kid (ryder is so shy!) finally he said hi....
anyways it was so cute...but the best was the mom and I exchanged info...and it ends up her son just had this surgery this winter that Ryder is having. She sent me a message and I'm going to share it...
I am so grateful God blesses me with such great people at perfect times. When we found out Ryder had CP, a woman I talked to that was a parent of special needs kids told me this...and I will ALWAYS remember. "Heavenly Father will always provide a way to get through our trials in life. Heavenly Father will always provide a way to get through what we face with raising these special Spirit children." Can I just say she wasn't kidding. We always are blessed with such wonderful people in our life, and the blessings we see are beautiful. Anyways here is some of her email....(oh and she talks about HAB, thats the service through the state that someone comes in and helps the child meet goals, and helps teach self help skills..its for kids that are severe....but sadly Ryder was DENIED completely because of s state workers stupid mistakes..and now we are fighting to get it for Ryder....esp after this email I got from this great new friend.)

"I am pretty sure Ryder is having the same procedure that our son had, our son also had his adductor tendon's released, because they were so tight and the botox wasn't helping as much, so Dr. Segal decided to cut the adductors. It is a very intense surgery and recovery, but it was well worth it for our son. I would also talk to your DDD caseworker to asked to have more hours put in for HAB and possible attendant care because after the surgery most of what I had to do with our son took two people. The recovery was much more extensive that I expected and I was so thankful to have a provider there to help me during the day!! Especially having to care for my daughter as well...

I was also very nervous about the procedure, but it really helped our son and all of what he had to endure was very tough for him and for the family, but I do think it was worth it!

Please feel free to ask me any questions.

The Procedure is intense and it will be alot on you as a parent, but you were given Ryder because you are an incredible mother! Always remember not eveyone has the ability to do what you do everyday!! You are a very special MOM and you need to remember that!!"

Tuesday, April 5, 2011

Today was a rough day. Ryder saw his wonderful Orthopedic Surgeon today, Dr Segal. I thought the appointment would go the same as usual....we go in get x-rays and get told all looks ok...and then we go on our way....but that is not what happened.
Ryder had X rays done (as usual every 6 months) the DR came into the room and asked me to step out with him so I could see the Xrays....I could tell he was bummed out. We got to his computer screen and I could clearly see something was wrong with Ryders hips....It was kinda confusing in words but basically due to Ryders high tone in his lower part of body his hip sockets are trying pop out the back of socket.
Lately Ryder has complained that his hips hurt, and his legs "scissor" (cross over each other)...and also his left leg only opens at 20%. (very bad)
Ryder has to have double hip surgery...and soon! Dr Segal said he doesn't like having to do this surgery on kids Ryders age...but sadly it has to happen this way. The surgery is going to be intense...(he said kids with spinal surgeries recover quicker then with this surgery). Ryder will regress with anything physically he does now...this surgery once again is very hard on the patient/child.
From what I understand is they go into the hip....cut into the bone....put in a metal plate...and also cut some tendons in the hip area. After I find out the exact name of surgery and more info I'll post a link with info.
Recovery in hospital is about a week...and 6 weeks at home... 6 months later they go back into the hips and take out the plates.

We are very sad about is something we knew would eventually happen...but not so soon
: (

We will keep you all posted on whats going on.