Back to reality....

I hope everyone had a blessed Thanksgiving holiday and was truly thankful for all the blessings and even the ones we do not consider blessings at this time. Thursday I went up to help deliver meals to the families at St. Francis Children's Hospital, it's been a busy 2 weeks with work and Jeremy that I haven't been up there and I truly hold dear to my heart is being able to visit the families who are there. Jeremy has respite on Tuesday so I'm going up there to visit Tuesday. Jeremy and I spent the afternoon at my sister's in Sand springs with her family and my parents. Saturday my mom has our Thanksgiving dinner at their house. I do know that I ate way too much but today got back into the swing of things and even did my treadmill for 30 minutes and tomorrow I start back on my diet seriously to loose the last 20 pounds. Jeremy has 3 weeks until he is out for Christmas break, so I have 3 weeks and 3 days until I take my week vacation off and I'm so looking forward to that time....

I got X-rays from Dr. Anagnost on Wed so tomorrow I mail them to Dr. Daniel Horsencmeyer (I know the name is not spelled right) in Columbia, MO this is the new Pediatric Orthopedic surgeon who specializes in spinal deformity. He will look over all the X-rays and we will probably be seeing him Mid-January for an appointment unless he feels he needs to see Jeremy sooner. He does his scoliosis clinics on Thursday, so I couldn't get one during Jeremy's Christmas break since the last 2 Thursday of the month are holidays.

The Thanksgiving season....

I think this should be a year around of what we are thankful for, one of my favorite hymns is, "Count your blessings" name them one by one.

GOD- I'm thankful that he is who he is, that he is merciful and loves everyone the same. It's all about him, I am where I'm at today, doing what I'm doing, have the blessings I'm thankful for because of him and only because of him.

Family- I'm thankful for loving parents, a Christian mom who made sure we went to church not only taught me the way of Jesus, but showed it by the way she lived. If it had not been for her I would not be where I'm at today. My dad didn't go to church, but he taught me a work ethic that so many today do not possess, he taught me to work for what you want, you take a job you do that job. My siblings who I wouldn't be who I am without them, even though we fought growing up and still have occasional disputes we are all there for each other, and thankful that we are all in a church serving GOD.

Jeremy- well he gets his own category, he's a big part of my life and so Thankful for the blessing GOD gave me with him. I had wanted a child so bad and was so excited when I got pregnant, couldn't wait to be a mom and didn't care if we had a boy or a girl. The long awaited day finally arrives after planning and anticipating the long 9 months. The event wasn't what I had envisioned, wasn't planning on having an emergency C-section, wasn't planning on our Pediatrician telling me there was something wrong with our son, wasn't planning on meeting our first Neurosurgeon that day, wasn't planning on him being admitted and spending 11 days in the NICU, wasn't planning on Jeremy having surgery the next day of his life, that wasn't part of my plan, wasn't what I was hoping for, I didn't sign up for that, wasn't jumping up and down begging GOD for this. This was what I got all wrapped up in an adorable, sweet, precious baby boy who was going to have special long term medical & developmental needs. Because of who Jeremy is. I'm grateful for the father who was a scientist and because his son was born with hydrocephalus he was determined to not let him die so he created the shunt for his son's survival it gave my son the shunt he needed to not only survive but start to thrive in life. I started doing lots of research, learning every bit of what I could where it pertained to Jeremy. I'm grateful for Dr. Cyrus our pediatrician, I didn't realize what I was getting when I chose him, actually I didn't choose him GOD had him picked out for Jeremy and sent him to me, it was a no brainier. Dr. Cyrus has been 1 of Jeremy's biggest advocate, a strong united front in my life a person I could fall back on when I needed assistance with Jeremy and with his words, "DON'T LET JEREMY SLIP THROUGH THE CRACKS" changed my life and I learned to advocate. I'm grateful for Sooner start who gave Jeremy early intervention, I truly credit them for Jeremy's ability to walk and do what he is doing, every bit that Jeremy was determined not to do something they were even more determined he would do it. They have become life long friends, support system for me. I'm grateful for all of Jeremy's medical team, so many who have went above and beyond the call of duty and truly had Jeremy's best interest in mind. I'm grateful for the ones in the past I have fired, through their inability to be the physician they should be, it taught me not to keep my mouth shut when it comes to Jeremy's medical treatment. I'm grateful for the educational team Jeremy has had through his life, past teachers, para and current ones. I'm grateful for the ones I said you are not working with my son anymore, again it taught me to stand up for Jeremy. I'm grateful for the State of Oklahoma for the In home support wavier that provides us with support. Phoenix Residential who provides us with HTS when I have to work to help take care of Jeremy. I'm grateful for Matt Cobb and the whole ETL (Effective-Teaching & learning) team, Matt has worked with Jeremy for 5 years on how to use his behavior in a positive way, taught me ways to work with Jeremy and the whole, HAPPY ETL team. I'm grateful for the Oklahoma family network, for the support it's provided me through the years and for the support that it has allowed me to provide to other families. For St. Francis Children's Hospital for giving Jeremy the start he needed in life and the push along the way, for helping so many families and for embracing The Oklahoma Family Network and allowing us to visit families who are there. The last 10 years has been challenging at times, more times than not but it's made me strong, it's made me advocate, and push for what I feel its wrong and sometimes I just push because I feel it's the right thing to do not just for Jeremy but for others. I don't know what the future holds for me or for Jeremy, I don't know about this upcoming spine surgery or how we will fix his spine I just know to trust GOD.

I hope if you get a chance to dance or sit it out, that you dance always give GOD more than just a passing glance, give faith a fighting chance and LIVE with GOD !!!!

The cutest little turkey boy....

Thanksgiving dinner at school, yes it was McDonald's they figured that way they would eat....

Why...

I've gathered all spine X-rays needed to send to Dr. Bridwell but something just hasn't felt right about sending them in, so I still have them sitting on my desk.

I think I wanted to wait and see if Dallas-Scottish Rite tells me "yes" or "no" plus after doing research Dr. Bridwell uses a fusion material that has not yet been approved by the FDA and do I want something fused to Jeremy's spine not yet approved. I also realize that Jeremy's spine may not be fused that may not be the treatment. I do know once I send Jeremy's X-rays to a physician I'm at their mercy to get them back to me. I know Jeremy needs to have his spine fixed, one way or the other and I'm not trying to prolong this, I have accepted this fact. I have prayed since day 1 that GOD lead me to the surgeon/facility and I can't rest until I feel I have found that person.

I can be a resourceful person, have lots of resources I can seek out, and one flaw I've developed since being Jeremy's mom is often I speak before thinking. It has got me in trouble but it's also opened doors. I went to OFN and they went to Missouri p2p. I made this request back before we met Dr. Bridwell and just got an answer today. They put me in touch with a Christian mom, who has a child fairly similar to Jeremy, he's mobile, very active & determined, has 1 heart defect but he was older when he had his surgery so they could fuse his spine. This mom was wanting to make sure they did the right thing by their son. Dr. Bridwell was not that person, so she continued to research and found a Pediatric Orthopedic surgeon who specializes in spinal deformity, who also has a child with special needs and is a Christian. He is at Columbia, MO. She is going to email the physician they ended up being good friends to tell him about Jeremy and ask if it's ok if I email and find out if he would treat Jeremy before we make that trip up there. Is he the right surgeon, is Dr. Bridwell or is Dallas Scotish Rite or is their one out there I've not heard of yet? I don't have that answer but my plan is to continue to follow all leads until I feel certain GOD has lead me where we need to be.

Jeremy matches words....

Jeremy did the vocabulary word match by himself, the para handed him the word and he matched it to the picture.

Jeremy counting

This is from Jeremy's teacher, it was an activity they were doing this morning. The Para handed him the ‘feather’ and asked where it goes and Jeremy did the rest on his own. He's been doing in his own words like he was counting, he will hand you pictures and he makes the sound like One, two

What is new....

I went to download some pics of our St. Louis trip but my adorable, creative son had deleted everything on my camera except one of him at school. One day we are going to figure out how he can use them powers for good. I had one of my mom & Jeremy while we were eating, mom looked spaced out and Jeremy looked like he was waving but it's gone.

I have decided to fill out the application for Dallas-Scotish Rite, there is just something driving me to keep pushing it and I can't let it go until I know that as Jeremy's mom I've done all I can do. Don't ask me why but I just have this driving edge to make sure. I sent the physician referral to Dr. Cyrus and when I get it back I'll mail in the application and will see. If I get a letter that says, "no" then I will know that GOD has shut that door.

I have almost collected all the spine test done on Jeremy since birth. I've just got to get the last 3 spine X-rays done at Dr. Anagnost new office. I got a CD from his last office with 8 years worth of spine X-rays. I had all the ones done at St. Francis in my own personal Jeremy radiology file. Yes I have a radiology file, 10 years worth of brain MRI & CT, shunt series, spine X-rays, skeletal surveys.

Jeremy had some issues last week that I was almost certain we would be checking the shunt, he ran into a little boy in gym and then into a wall, he was wanting me to carry him, he was aggressive just suspicious shunt things. He had an awesome weekend, he's been in a really good, loving mood and really verbal. I put him on what I call, "shunt" watch, if things keep building or become suspicious we will be seeing Dr. Cyrus and go from there. We do have a eye appointment on Nov 24 and are going to start some vision therapy. We see Dr. Marouk on Dec 7 to talk about the last MRI and have our 2 year check. Then I need to get a follow-up with Dr. Kayser the geneticist to see if some of our latest findings change anything for the J man...

Our trip to St. Louis.....

Quick trip, 400 miles one way. We left Tulsa at 12:21, stopped in Joplin to eat something, and then drove to the other side of Springfield to Marhsville for a stop to refresh ourselves and take a break. Then on to outside Rolla to gas up and head on in to St. Louis where we found our motel, unpacked and was asleep by 8:30pm, had a good night sleep. We arrived at our appointment this morning early. We seen Dr. Bridwell and he wanted a spine X-ray which at first we didn't think we would have to do X-rays but he needed to see his spine. Dr. Bridwell was very thorough and just as I expected, he will research Jeremy to come up with the best plan for him. I've got to obtain his X-rays that were done when he was in NICU, then when Dr. Cyrus first discovered the scoliosis, and then each one thereafter. He wants to see when it started to progress to determine what is the best plan. Putting Jeremy in traction was discussed, growing rods were discussed and of course fusing the uppper and lower part of the spine was discussed so the growth would come from the middle but at this point nothing is set in stone. Dr. Bridwell mentioned doing something in 6 months so we put a tentative date on the calendar of May 19. That would give Jeremy the summer to heal. At some point we will put Jeremy under and he will stretch him out and get an X-ray so he can see how his spine will do under surgery which way the spine will go when stretched out. We left about 1pm and arrived home around 7:30pm, we have unpacked, got Jeremy ready for school, my stuff for work and papa came and picked up granny. Just continue to pray that GOD work his plan out....