"One of our Miracle Stories"....

That's what the doctor said yesterday after Delaney's procedure....Delaney is one of our miracle stories. As a parent, those words meant the world to me! When we started this process, the diagnosis was grim. We pictured our precious daughter in a brace until she was a teenager and able to handle spinal surgery which may not even have corrected her. She could have had major deformities and health problems from her scoliosis for the rest of her life. A short 15 months later she is cured! She is healthy & happy and will not have all the problems we envisioned. We owe it all to Shriner's Hospital for Children & the wonderful website that gave us hope, infantilescoliosis.org.

I will say, it's almost a love/hate relationship with Shriners. NO ONE wants to see their child go through what Delaney went through yesterday. When she looked at me with her tear filled brown eyes screaming Mommy, I wanted to snatch her up and take her home...my heart said protect her, my head said this is for her to be healthy.  My head won and my heart broke. Guess that's all part of being a parent.

Starting at the beginning of our LONG 24hours...we checked into our hotel in Erie & ordered room service. Delaney had slept the whole 2 hour car ride there, so she stayed up until 10. She had so much fun. That girl can find adventure anywhere she goes...she thought the hotel room was great. She ran around laughing & playing like she has never been out of the house before. She has so much personality, she constantly has me laughing. She did fall & hit her forehead on the bed, which gave her a big lovely bruise. She cried for about a minute & was up having fun again. Always the trooper...

So 6am started our 12 hours of torture. We got settled into her room and of course the nurses came & took all her vitals and ask us the hundred questions they have to ask before each "surgery". Then we headed to pre op to talk to the doctor & anesthesiologist. Today they were doing a mold of her body to give to the prosthetics dept to make her brace. They took her to the OR at about 9:45 and by 10:30 we were in post op with her. After being put under she is always so out of it for a while, very disoriented and crying. She was still hooked up to the IV and all the monitors but they do let us hold her. We were in post op for about a half hour until all her vitals are stable and she was doing well. Then we were taken to her room where the nurse came in and took all her vitals (which of course she cried through). They won't take the IV out until she has had some juice but she was to tired to drink and fell asleep in my arms. So we just sat there while she slept for about an hour. When she finally woke up she drank lots, so they took out the IV and we were allowed to leave to get lunch. By this point we couldn't get Delaney out of there fast enough...she had had enough of all the poking & prodding. She cried until we got in the car. We were supposed to go to prosthetics at 3 to be fitted. I think this was the worst part of the day. As soon as the put the brace on her she threw up everywhere, and apparently the guy couldn't handle it so he LEFT. He just left the room and didn't come back. So poor Delaney is in this brace that hasn't been fitted properly yet so it's very tight, she just threw up and she is screaming. That was the point that I just wanted to leave, just rip that brace off and never come back. It took about 10 minutes for someone else to come back and mark where the brace needed adjusting. So we finally got the brace to fit right after about 4 adjustments and lots of tears (Delaneys & mine). Then back to Shriners to xray her in her brace to make sure it would hold her spine straight. We headed home at about 5:15...whew long day! Poor Delaney didn't even seem like the same kid, she looked beat up, red eyes, exhausted, bruises on her arms from IV (plus the lovely bruise on her forehead), she breaks out from the tape they use so her face and arms had red rashes. And she just sat there staring with her head hanging. Definitely NOT my fun loving Delaney. It was a pathetic sight.

Didn't realize this would get so long, so I will get to the good news. We are going back on Aug 5th to make sure she is still good, just xrays this time...and if she is still holding straight they will start weaning her off the brace!!! That is the miracle part!! We thought she would be in the brace AT LEAST until she was 5 years old...but she has done so well, corrected so quickly & had no set backs that she can wean off now at 2 years old!! We have been so lucky because so many kids don't even get diagnosed until 2 or later..and here she is, just turned 2 and weaning out of hers!!

God bless infantilescoliosis.org, Shriner's Hospitals for Children, Dr. Patrick Cahill and all the wonderful staff at Shriners. You gave our daughter her life and I could never repay you for that! You are angels sent right from GOD!!!!!

Great news and a new friend!

On February 19th we had Delaney's checkup at Shriners. I have to confess I was nervous. Delaney's brace, which she got last June was so tight. She was miserable all the time and could hardly eat when she had it on. So, probably since Christmas we have been letting her go without it a lot more than we should. Since it didn't fit the same I was also afraid having it on and pressing her back in the wrong place would do more harm than good...so needless to say we were pretty lax with it. So this appointment was especially important because I was afraid of her regressing.

Wonderfully, not only did she not regress but she IMPROVED!!! Which is amazing since she was out of it so much. She actually went from about 9 degrees to 3 degrees! What a little miracle she is. You could tell by Dr. Cahill's face that he was very pleased. So pleased, in fact that Delaney only has to wear the brace at night from now on:) To put this into perspective, initially, she was supposed to be in a CAST for 2 years then a brace 23 hrs a day until she was a teenager. Instead, our girl wore a cast for 4 months and the brace 23 hrs a day for about 9 months. She is at the place with this that we thought she would get to as a teenager! AMAZING! We have been so blessed.

They did do some brace adjustments to make it fit better, so that we could get more use out of it. She is scheduled to have a new mold and brace (which she has to be put under to do) made at the end of May. I always hate those trips, they are so long and grueling...but so worth it!

Just a side note, Delaney has a small blankie with a bunny head that has been "her" blankie for ever. She sleeps with it and it is very loved. Well while getting her xray..she was very upset, so they gave her this cute little Panda Bear. It has now joined ranks with blankie. She hasn't let it out of her site since she got it:) So we now have 2 "lovies" Bear, she calls him, was her comfort at Shriners and is now part of our family:)

Here is a picture of her at Shriners with "bear" and in the smallest gown they had. She looked so cute:)

It's been a year!

One year ago today Delaney was diagnosed...worst day of my life! Sorry I haven't updated. My apologies to everyone. I guess maybe it is a good thing I haven't written. No news is good news, right?

Last June, Delaney was officially taken out of the cast and fitted for a brace. Her curve was "unmeasurable" meaning it was below 10 degrees. They still had to put her under to get the mold for the brace. After the "surgery" we took the mold down the street where they made her new brace. After it was made and fitted to her, we headed back to Shriner's so they could x-ray her and make sure the brace was holding her spine straight. It was holding perfectly but it was rubbing her in some spots, so back to Prosthetics for some tweaking...whew, what a LONG day! Her brace looks just as uncomfortable as the body cast..very tight! It's very "fashionable" for a brace..LOL! It has pink & purple butterflies all over it. While she can't appreciate that right now, Mackenzie sure does:) Here she is in her new brace...

Clearly, we still have the same diapering issues...her little crack is always hanging out:) Our biggest concern is that she hardly eats...I'm guessing because the brace is so tight. She is supposed to wear it 23 hours a day...but on special occasions we have let her out for a day. She always eats so much better with it off. At 22 months she weighs a mere 18lbs 14 oz, but she has been better lately so we are hoping she will start growing soon!

I promise to keep updating. We have an appt with Shriner's on Feb 19th and I'm betting she will need to get a new brace as she is finally growing out of this one. But almost daily I am running my fingers up her spine and so far...still feels straight!! Thank you all for your prayers..it worked!