Tuesday, February 16, 2010

One day closer to answers and a plan...

We got the CT scan and echocardigram done today. I sent the CD that had the CT scans overnight to Dr. Dan, guarantee deliver by 3pm tomorrow. Dr. Dan said I would know next week what he plans for Jeremy's surgery. I will be excited to finally have an answer, the plan. It will be a closure to 5 months of searching & wondering. This will tell us what to expect with surgery, recovery in the hospital, recovery at home and some specific prayer request. We are also looking at setting the date for surgery. By next week I should have a surgery date and plan. The echo was done today since Jeremy was going to be out and we would need one before surgery. I just have to follow-up with Dr. Klewier our Pediatric Cardiologist before our Pre-op appointment.

This is a picture of Jeremy in recovery, he was precious and resting very peacefully.

Monday, February 15, 2010


Tomorrow morning at 8am, Jeremy is getting his CT scan of his spine to the specs that Dr. Dan needs. We will be there bright and early @ 6am to check in. We weren't going to be able to get the echocardigram until March 31 and I didn't want to wait that long to get the CT scan done. I was given a list of what needed to be done in priority and the CT scan is first, this is going to determine if Jeremy's spine can tolerate the equipment needed for growing rods. Once Dr. Dan gets the CT scans, reviews them, the other X-rays we did and talks to his partners we will have a surgery plan, that means a date. I was upset that we couldn't do the echo at the same time, not wanting to put Jeremy back out but thought we will deal with that. My mom is coming in to watch Jeremy when we get home and I told her, unless there is a miracle he won't do his echo tomorrow. Dr. Klewier, J's Pediatric Cardiologist called me during lunch to say she was working on it, would talk to the head of that department. Shortly thereafter Dr. Cyrus office called me and I spoke to him and he is taking care of it and said we would get the echocardigram done tomorrow, he was calling them about 8am and telling them to head to radiology... Go Dr. Cyrus !!!

Pray for us in the morning, that we in fact get to do both test this would make it so much easier on Jeremy. Jeremy knows when I put him in the car that early in his PJ's we are going somewhere and it's probably to the hospital. This is only his second procedure at our new children's hospital and he still remembers when we did the miracle child video, he got to go up and play outside and in all the playrooms. Then trying to keep him entertained from 6a - 7:30am while we are doing the check in paperwork. Then when they give him the drink to relax him, he likes to ride around the floor in a wagon and he's happy...

Thursday, February 11, 2010

Pictures of our trip to Columbia...

I had some pics from our trip, some of Jeremy at the RMH and then the bridge you cross coming into Jefferson-City which was really pretty. I had mom to take pictures of the bridge while I was driving and then as we cross over I multi-tasked (don't tell anyone) and took a few. I took them to show my Aunt Betty because she hates bridges with a passion, in fact I commented to mom if Aunt Betty was with us I would have had to stop, let her out and she would have walked across the bridge.

Are you ready to see the pictures? Well there will be none, while I was busy unpacking J nabbed my camera. I didn't think he had it very long when I found him with it but when I went to download pics he obviously erased them. I've got to find a way for him to use his powers for good....

Wednesday, February 10, 2010

Prayer request for Jeremy

GOD answered my prayers on making a decision, I know we have found the physician he would have us to follow with. I am at total peace, feel comfortable and confident in Dr. Dan’s expertise of Jeremy's complex spinal issue. Please pray that we can get this 3D CT scan done quickly, this will help determine the direction of the surgery. We need to pray that Jeremy’s spine can tolerate growing rods, this will allow Jeremy 3-4 years of growing which he needs before a spinal fusion. Pray that the kyphosis is more flexible than what Dr. Dan is thinking. Pray for Jeremy and the surgery this summer, his health, body, recovery and no complications. Pray for Dr. Dan as he prepares to do this surgery on Jeremy, as he starts to gather information from the CT scan, the X-rays and the discussions with his partners.

Saturday, February 6, 2010

GOD doesn't give special needs children.....

"God doesn't give children with special needs to strong people; He gives children with special needs to ordinary, weak people and then gives them strength. Raising a child with special needs doesn't TAKE a special family, it MAKES a special family." I stole this from a friend who stole it from one of her friends.

I love that statement because I can't count the number of times I've been told, "GOD gives special children to special people" "you are awesome". I know it is a well meaning statement and it's meant to make me as a mom who the world views different to feel better. I AM NOT SPECIAL, I AM NOT A HERO, what am I? I am Christian, I am a mom who loves my son beyond this world. I do have strength that can only be explained that it comes from GOD. I would take on the world to make sure Jeremy gets what he needs. I am often times frustrated because my son can't communicate his needs or advocating for through a system for what he needs. I'm tired, often times it seems like all I am doing is fighting. I'm often viewed as difficult to deal with. I'm often times scared to death for my son's life and I like any other mom I cry myself to sleep when my son hurts. I hurt for Jeremy, just like any mom who hurts when their child is hurting. I want for my son what every parent wants for their child, I want him to be happy, healthy and have friends. I know some got that calling in a visit with their doctor, some after birth and some years later. My life changed on August 9, 1999 @ 9am, I did become a mom, a mom of a son who is going to have a battle mentally, physically, emotionally and have health issues. It did change me as a person, it made me humble, to appreciate the small things in life, not take for granted, that first smile, that first word, that first step. It also made it easy for me to see GOD each and every day through Jeremy. It's made me to see the world through the eyes of an innocent little boy who just loves.

I realize with my post from Thursday I made it sound like everything was just AWESOME. I do have peace, that we have the right surgeon and that we have a plan although we don't now exactly it depends on a few test. Jeremy's upcoming spinal surgery is going to be tough, it's going to be a tough surgery on him, it's going to be tough on me. The day Dr. Anagnost told us we needed to look at doing some correction, I cried all the way home, cried myself to sleep many nights and walked around for days like a zombie. I hate that Jeremy has to go through this complex surgery, it was one I was hoping he wouldn't have to deal with. I'm always afraid with each surgery is this the one he won't make it through, what if something goes wrong and he becomes paralyzed. I know there are risk. I know I will have many ups and downs before the surgery. I also know I can't dwell or think about these things and that I have to put my trust, faith and hope in GOD.

Thursday, February 4, 2010

Here are the details...

We had a great trip to Columbia. It was not a bad drive and Jeremy tolerated it really well, he was a trooper. I was going to take a picture of the backseat before we left and then when we got home because no one would believe that he literally shredded 3-4 magazines, but whatever it was fine. I just cleaned it all out. I think we almost got kicked out of the Ronald McDonald house, Jeremy got away from me one time and was not in arms length of me and the house person let me know that was not acceptable. Jeremy can get out of arms length from me at any time. I was grateful to stay there it was so close to the hospital. I however felt like I was at college, it was an old 3 story house and we had common bathrooms. They had an awesome play room down stairs, Jeremy found a big bouncy ball and he was in heaven. He was allowed to take it to our room. He was restless after the drive but he did fine. We hit a wintery mix on the way home so that made the trip a little longer, but he is on his own turf tonight.

The appointment went well. They did several X-rays of Jeremy, one in traction where one X-ray tech held his arms and I held his legs and we stretched him, that allows the Dr. to see how flexible his spine is and when it's released which way it will go. They had 3 awesome X-ray techs, who interacted with Jeremy and he responded well especially to Ben. Ben became Jeremy's friend and Ben really took to Jeremy. I love seeing the residents, they are funny. The resident comes in first and the look on his face when he goes over Jeremy's history but nothing like the deer in the headlight look when you tell them he has FG syndrome. They don't want to act like you just blew their mind, so he says, "Well what does FG stand for". My reply, "F G" and then the explanation. Then Ben came back to get us because one X-ray was blurry, he carried Jeremy down there. Then the final moment to actually meet Dr. Daniel Hoeresncmeyer, just so you know for future it's Dr. Dan. I felt like I already knew him, we had emailed, I had researched all I could about him. He explained what he was looking at with Jeremy's spine. I was totally treated like a mom who was a person, but not only that he was totally patient with Jeremy and Jeremy responded to that. Jeremy was a person, not a complex spinal case. Jeremy's spine is fairly flexible. We are looking at surgery in May, hopefully toward the end or first of June so Jeremy will finish the school year and have the summer to recovery and adjust to his spinal difference. The first plan is growing rods, there is commitment meaning he will need to have then lengthen possibly every 6 months. To do the lengthening is not as intense as the surgery and what we are doing is guiding Jeremy's spine as it grows. Jeremy will then continue to wear a TSLO brace like he's worn since he was 2 years old. The rotation inward is Kyopsis and I'm sure the spelling is wrong and that might pose a big problem for us. Dr. Dan said that could require 2 initial surgeries, which Dr. Anagnost told me that could happen. He said they could go in from the chest cavity and release that inward rotation, go to recovery possibly in traction and then go back to do the growing rods. We have to get a CT scan, C, T, L-spine with 3D reconstruction. This will show Dr. Dan if J's spine can handle the hardware required to do the growing rods. He asked about doing that today while we were there and I told him normally we have to sedate Jeremy for these type of procedures and if he was going to require a new echo our Pediatrician is awesome to work on getting numerous procedures at one time. He said good enough he would wok with us in any way we needed. We could get him the films. I'm going to send Dr. Cyrus an email tomorrow to get this process started. I assume St. Francis can do 3D. That is our first task to accomplish because if his spine can't handle the hardware that will change his mind on growing rods. He did another X-ray before we left that will show how flexible the inward rotation is, but he told us we didn't have to wait around. Once we get him the CT films, he looks at the other X-ray and talks to his partners to make sure he is thinking in the right direction we will then look to schedule the surgery. We will go back before surgery to do a pre-op, which will be the normal, Jeremy's physical & history, chest X-ray and blood work. I did ask him if he would wait until Jeremy is 18 to do the spinal fusion and he said he wouldn't wait that long, probably 3-4 years. Depending on what has to be done, Jeremy could be in the hospital 3-4 days with growing rods, if the kyopsis is complex it could be longer depending on what he has to do.

It's going to be a tough surgery on Jeremy regardless of what has to be done but again this isn't an elective procedure. I have an unexplained total peace about the whole situation. I know GOD lead me to the physician he had picked out. When we first started looking Columbia, MO wasn't even on my radar. In my mind I was thinking Dallas Children's, Dallas Scottish Rite and St. Louis. I always prayed since that day in Dr. Anagnost office he said, we've got to address this no longer wait and see that GOD would heal his spine. GOD started over a period of time change my prayer and I started to pray GOD send me to the Physician you have picked out. I know today I found that person, and Dr. Dan is who we need to follow with.