Wednesday, November 28, 2012

Nov 28th: Scoliosis Clinic

Today we took Arianna to see Dr. Vincent for her scoliosis check up. For those that dont know her history. She was born with a butterfly vertebra and missing one of her lumbar vertebras. She had an MRI of her spine and brain around 18 months which showed a slight curve which lead us to the scoliosis docs.

We were seeing one doc for a few years. Each time we went in the curve was getting worse until one visit he said it had decreased! Praise God! She had issues with her feet, needed shoe inserts and been told she has very loose ligaments which caused some delays and issues as a younger child. We tackled each issue with therapy and she overcame every one.

Last year her x-rays showed her curve had decreased again and we rejoiced for the good work God was doing in our daughter! Even our pediatrician did a physical and said her curve looks as if its not there. So when we went for her appointment today we were expecting to get the same news....well that did not happen.

The orthopedic doctor did his physical assessment and seemed to be very happy. He checked her leg lengths and said it all looks great. Whatever kind of curve she has is strickly from her spine. Then he proceeded to pull up her x-ray and we were all shocked! You can see a huge "S" curve on the screen. Now this isn't completely new to me. Everytime shes had xrays this year for pneumonia we (Robert & Myself) noticed her curve looked worse but we didn't think about it and continued to thank God for her good news. What shocked the doctor is that at this degree of curvature there should be asymmetry of her ribs during a physical and she doesn't have none, hence why the pediatrician said its seemed to be resolved. He can't give me an answer for why she doesn't show this in her ribs but the x-rays don't lie and her curve is worse.

The doc measured her curves and her upper curve has gone from 13 degrees to 25 degrees in one year. I honetly can't remember her lower curve but its about the same progression.

So...this lead us to a lengthy conversion about what to do from here and what the future looks like for Arianna. Clinically, she has advanced from mild scoliosis to moderate scoliosis in one year. The likelihood of her curve getting worse is high. We just won't know to what degree.

I asked all the "what if's" and got alot of numbers. Basically, the bigger the curve the higher the chance of reoccuring issues with scolisis throughout adulthood. Since Arianna is only 6yrs old and has a significant amount of growing to do this increases her risk.

But what do we do right now? Well the doctor needs to keep a close eye on her at this point. I asked if its possible she doesnt progress any further and he said since shes already at this point its highly unlikely. He wants to see her back in 6 months to see the progression at that point. If she is around 40 degrees then we will have to talk about bracing and if its more than that then we need to talk surgical intervention.

Now let me explain the bracing issue. Typically children do not go in braces until they hit puberty because that is when the advanced growing takes place. If we are to put Arianna in a brace at 6 years old she will be wearing it for 8 YEARS!

Now if her curve gets to about 60 degress then we have no choice but to place rods in her back. A HUGE fear of mine and something I honestly can't even think about it right now.

So many people say how strong I am and how they could never handle all I go through with my daughter. Let me just take this moment to NOT be strong and whine for a second. I HATE DiGeorge Syndrome, 22q11.2 Deletion Sydrome, Velocardiofacial Syndrome, WHATEVER YOU WANT TO CALL IT!!! The unknowns, the unpredictability, the second guessing, the surgeries, the fear, the pain, etc. etc.... I handle all of this because honestly I have no choice. This is my daughter...my precious baby girl who was given to ME! I have to be the BEST mother I can for her. She needs me. I'm not the one physically going through all of this..she is and it breaks my heart. She is the one that is strong and gives me the strength I need to wipe the tears from my face and tell her it's going to be okay. To stand by her side and be her personal cheerleader!

But we are not alone. We have God on our side and when things like this arise we stand together as a family with all our fears and worries and place it in His hands. He is the only one that can get us through this. We have laid hands on her and asked God to once again touch her miraculously and stop this progression of curvature...and reverse it!

In the flesh you can easily be swayed by the things of this world. I've seen the x-rays and got all the information from the doctors. I know what the world has to say about this but I also have a God bigger than all of this. I know...you may say.."Vanessa you've said this before about her heart." Yes, I have and I know now that God's plan for her was to have her heart fixed by man and receive her healing that way. I've been able to grow my faith in this area as I've studied the bible and spent quit time alone with God. A few year ago I couldn't see that. I know I can petition things to God and I will no matter what arises but I also know that God has a plan for her. Some things she is healed from in the super natural and some things she is healed from in the form of surgeries and the guiding of a human hand. Whatever direction we head with Arianna regarding her scoliosis I know that God will be there every step of the way and I put my faith in Him.

Does it hurt emotionally...YES..I'm human and no one wants to see their child suffer in any way. However, I know I have to remember God can see the BIG picture. I know in my heart she will touch many lives and lead many to the Lord. She has already brought me back to God and built my faith. I will not sit here and get mad at Him for allowing her to go through these challenges because I can find comfort in knowing she was put on this earth for a GREAT purpose and she will fulfill all that she is suppose to. This is our journey and we walk it with her...showing her how to trust in the Lord in all circumstances.

November 14th

Arianna's Pediatric Cardiothoracic Surgical Team: Dr. Thompson (Left), Dr. Teodori (Back right), & Richard Burt, P.A. (Front) 
Just one day shy of 4 weeks pos-op we went to see the surgical team to make sure everything was going well. A week before we saw the cardiologist and had a follow-up echo. So far everything looks PERFECT!

They kindly reminded us these valves don't last forever. Dr. Teodori expects about 10 years of out of this valve but there are many factors to consider. It could be sooner than that. Either way we do what we've always done. Go to cardiology appointments every 6 months and monitor her from here. When the time comes again we will replace her pulmonary valve again.

Monday, November 5, 2012

Weekend Update

We took Arianna to a photo shoot to have her picture displayed at Diamond Children's Medical Center! She will be either on D5 or D6! We are so grateful for the new medical facility for our children.

Went to visit Gracie! Gracie wanted Arianna to sit on her couch with her and Arianna didn't hesitate for one second!
Sunday Arianna woke up complaining her chest hurt and just looked tired. I think she's been trying to do too much physically lately and it took its toll on her. I had her stay home from church and rest. I'm going back to a regular schedule on her Tylenol to help prevent the aches and pains at this point. She is doing amazing otherwise!