Friday, October 30, 2009

Our visit with Dr. Philips

Today was our visit with Dr. Preston Philips, Orthopedic surgeon- spine specialist that St. Francis recruited 5 years ago from Boston. I also found out at the NICU opening that he is on the Board of Directors for St. Francis. He remember me from the time I was up visiting families and I told him I was on the Children's Hospital Family Advisory council and was at the dedication for the new NICU. If surgery was to be done in Tulsa he was our hope. We had a really good visit, he spent a great deal of time digging into Jeremy's past, checking our MRI, X-rays his office did asking me questions and answering mine. I really appreciated his patience, but I don't have a plan of what will be done at this point. I was impressed with him. It was a long afternoon and at some point my brain went numb, talking about all of the variables and the jog back into reality that Jeremy is a complicated case. We've not had anything major to deal with in 8 years. Jeremy's curvature is 75 degrees both way, we knew it was getting up there. Dr. Philips does not recommend fusing the spine, he said Jeremy's growth plates were wide open and although he is of small stature he has growing to do. Once the spine is fused there is no going back. Jeremy needs the growing rods but St. Francis is not equipped at this time to do that. This will also require surgeries as he grows to lengthen the rods until it comes to the point that the spine can be fused. He said there are only 2 places that do the growing rods. Dallas Scottish Rite is one, I told him I had called and had several people told me they only see children who live in Texas, he said that doesn't sound right. I told him we need this type of expertise here and he actually had recruited a physician from Dallas Scottish Rite to come to Tulsa but his wife got pregnant and she wanted to move back home, so he moved to Baltimore. This is being looked at so there could be the time if the rods needed extended that could be done at St. Francis. He said the other option was Washington University, and I told him we already had an appointment with Dr. Keith Bridwell on Monday and he said excellent keep that appointment. He said he practices with Dr. Larry Lenke and they are both on the leading edge of research in scoliosis. I asked him what he thought they would do, again this is only what he is thinking. He said they could possibly put Jeremy in traction for 2 weeks to a month to stretch out his spine and see how much correction they could get before surgery. This would be done in the hospital. They also have a halo traction wheelchair but I don't know if that is something that can be done at home, which would of course be my option. I do realize that I won't know exactly what Dr. Bridwell plans to do on Monday, his medical assistant told me that he likes to study each case and see what is the best treatment plan. I had to get him the MRI on CD. I'm expect to have a fairly good idea of what he is thinking and what each of these option entail as well as surgery, recovery. What I've read the growing rods are easier to recovery because you don't have to wait for the bone graft to fuse or the spine fuse.

A new note, which I knew this was more than likely coming but with all of this new findings on the MRI we know Jeremy has an underlying genetic syndrome, Dr. Kayser feels he is no longer diagnosed as FG syndrome but something else is out there. We will follow up with Dr. Kayser but it's going to be after all of this is underway.

The plan is to go to St. Louis on Sunday to see Dr. Bridwell on Monday as it appears that GOD has lead me to where we need to be as well as the surgeon. I was so hoping it wouldn't require us to go out of state, but if this is God's will it will work out.

I cried on the way home, as a mom for my son pouring my heart out to GOD openly, why, this isn't fair, why does Jeremy have to just keep going through so much in his life, why do we have to go out of state to receive care, it would be so much better here at home. I don't know the answer, I don't have any peace right now, and am back to walking around like a zombie. I just have to trust GOD, who is Jeremy's creator and wait for him to unfold the plan. I am just currently very numb and am typing this out because I really just don't want to verbally discuss this right now. I know everyone wanted me to call and update on what was happening but I can't emotionally do this right now. If I start to discuss I tend to try to diagnose the situation and my mind wonders farther than it should.

Pray for us a safe trip to St. Louis, a good visit with Dr. Bridewell.

Thursday, October 29, 2009

Wacky hair day...

I tried for a blue mowhawk, with gold glitter hair spray on each side. Bad choice of color with gold it just blended in with his hair. I should have done red on one side, blue mowhawk and green on the other. Oh well he didn't care and was mad that I sprayed his hair down. I picked out his blue, monster hero shirt to go with the outfit.

Tuesday, October 27, 2009

A busy week, hopefully we will have answers....

Today, Tuesday was wear your shirt backwards day, tomorrow is wear red day, Thursday is crazy hair day and Friday is what do you want to be when you grow up day. I'll get some pictures of Jeremy, today you really couldn't tell his shirt was turned inside out. I'm going to get him some stuff for his hair for a whacky hair day and try to find him a doctor outfit for Friday.

This is the week I have been waiting for since we went to Shriner's earlier this month. Friday, Oct 30 @ 2:30pm we see Dr. Preston Phillips the Orthopedic surgeon who is a spine specialist, St. Francis recruited him 5 years ago, he's from Boston area. If Jeremy's surgery is done in Tulsa he will be our man. I have been able to observe him on 2 different occasions and meet him once while visiting families whose children had scoliosis surgery by him, so I'm definitely excited to see him in a clinical setting. I explained to him one evening about Jeremy and he gave me his card. It will be nice to get his opinion, see what he thinks and I'm hoping to have a better understanding of what Jeremy is going to be facing, the surgery, recovery and long term. Then Sunday after my church, my mom, Jeremy and I will load up in the car and make the 6 hour journey to St. Louis, MO for a 8:45am appointment on Monday with Dr. Keith Bridwell. St. Louis Children's kept coming up and when I researched and called for an appointment this is who I got so I feel I have to follow this lead. I may not know his opinion and or plans when we leave Monday, I know by researching he often times like to study history of the patient to come up with a plan.

Please pray, pass this along to everyone prayer list. Pray that GOD will open my ears to hear, eyes to see, heart to his plan and will for Jeremy, not mine. If it is GOD'S will for Jeremy to have surgery in Tulsa , let me know. If it's God's will for us to do this in St. Louis, let me know. If it's God's will that I need to keep looking, let me know. Pray for our Pediatrician as I will be discussing my findings with him and he will guide me in making the decision.

Monday, October 26, 2009

Oklahoma Family network- Hope of Harvest

That was the theme that was chosen for our OFN family reunion at Chester's Party barn in Piedmont. It was also Jeremy's school carnival but I knew he would have more fun being outside than inside. I purchased tickets for us to attend, my mom, sister and niece went with us. It was a nice road trip and a chance to try out the new vehicle. OFN has been such an important network in my life, many times over it has helped me with Jeremy. As the NE regional coordinator and with all the families I help I always receive way more, learn something new talking to new parents. It's always nice to be the bridge that connects another family with resources or another family in a similar situation. I always want to support what OFN is doing.

Here are a few pictures of Jeremy and when I saw a few I mean 3 because he played with my camera on the way to Granny's and ran down my battery. He was interested in the animals and wanted to crawl over the fence but I couldn't get him to even think about petting the goats or look at me for a picture of him and the pumpkins. He rode real still on the hay ride, we didn't go through the maze but we went down the big slide and landed in some wet sand in which he thought that was pretty darn funny. He picked out a pumpkin and we painted eyes on it yesterday and then he threw it, he thinks it's a ball.

Friday, October 23, 2009

The love of GOD....

I ponder from time to time, but I believe that GOD puts these thoughts in my skull to ponder and lessons to learn.

As a child, John 3:16 was probably the first bible verse I memorized. “For GOD so loved the world” yes the whole entire big world we live in and not just the USA. “That he gave his only begotten son” how could someone love the whole entire big world so much that they would give up their only son, come to earth in man-form and endure what he did just for us, because he loves us that much. I always heard before Jeremy was born, you can’t imagine loving someone that much that it will change your whole life and way of thinking. I do love Jeremy beyond words, would do anything for him, would die for him. August 9, 1999 when I was first shown Jeremy Ray and I looked into his innocent eyes my life was changed and he became a big priority in my life. “That whosoever, believeth on him” I’m glad he said “whosoever” because that means me and I knew at a young age I was a sinner and I needed GOD in my heart and life and needed to allow him control of this life. It also means whosoever calls up on his name. That includes the whole entire human race. The human race who are way beyond how wicked they were in Noah’s day and he flooded the earth, then what about Sodom and Gomorrah days, I think we have advanced way past that point as well, he destroyed them turned Lot’s wife into a pillar of salt because she couldn’t turn from her wicked ways, she couldn’t stand what she thought she was leaving behind and had to turn and get a look. “Should not perish but have everlasting life” that is life eternity, everlasting in heaven with HIM, the alpha and the omega, the beginning and the end, the first and the last and my creator. I can only imagine that AWESOMENESS right now. I don’t know sometimes how GOD continues to love me, when I do the stupid things I do, get off track, take my focus off of him but he does and I’m so glad it’s a father’s love.

I get frustrated with Jeremy, often but it's the same frustration that makes me realize how innocent in his way of thinking he is, he doesn’t understand the way of the world, he just loves, wants to be loved and welcomes love. He sees everything as good. I can say since becoming a mom, he has taught me in so many ways. I need to see the world through Jeremy's eyes, through the eyes of GOD !!!!

Monday, October 19, 2009


Jeremy was out of school, Wed, Thursday and Friday for Fall Break. I know he's going to have spine surgery so I decided I would just take off Friday instead of my normal 3 days. I made arrangements for the HTS on Wednesday, Joyce she has watched him in the past. I came home he was still in his diaper, she said he didn't want to get dressed, fair enough he needed a lounge day. He was being his normal little ornery self. Thursday, Granny came to watch him, we went and got casted for new AFO. When I got home at 4 they were laying on the couch. We took Granny home, stayed a little while and Jeremy really just wanted to lay in my lap so we came home. I figured he was starting to get sick so we probably wouldn't be going to the zoo on Friday which was my plan. He laid around when we got home, about 8 I thought we might as well get ready for bed. When I was getting him dressed I noticed he seemed to be in pain, when I touched his foot and the big toe he was picking at earlier in the week was infected so I called the nurse and knew I would have to go in. I tried the new Pediatric Urgent care clinic but they were not taking anymore patients so I called the nurse back and Dr. Rippey called in Jeremy some bacatrim for the toe. Well during the night he started to run a fever and when he woke up Friday it wasn't just the toe he was pretty lethargic. The good thing he had been eating and drinking so we go in to see Dr. Cyrus, he did a Chest X-ray, cleaned a monster out of his ear and we came home and Jeremy slept pretty much all day. Saturday was a repeat he slept most the day, took his antibotic and breathing treatment. Saturday evening he started feeling better as I started feeling worse, so Sunday & Monday I stayed in bed and stayed home from work. I haven't been this sick in many years and either has Jeremy.

Tuesday, October 13, 2009

Philippians 4: 8-9

8-Finally, brethren, whatever is true, whatever is honorable, what ever is right, whatever is pure, whatever is lovely, whatever is of good repute, if there is any excellence and if anything worthy of praise, dwell on these things.

9- The things you have learned and received and heard and seen in me, practice these things, and the GOD of peace will be with you.

Our pastor told us Sunday to mediate on this verse, so I have wrote it at the top of my prayer list and have been reading it over and over so that I will dwell on the word of GOD, what is right and what is true.

I got an appointment for Jeremy to see Dr. Keith Bridwell at the Orthopaedic Department at Washington University in St. Louis on Monday, November 2. Dr. Bridwell has devoted his career to patients needing complex reconstructive spine surgery. I've seen some of the cases and he's done some pretty complex cases, I realize they aren't going to post the negative results but I also realize you could put Jeremy next to another child just like him and the outcomes would be different. Is he the right surgeon for us? is St. Louis Children's the best place for us? I don't know at this point but I feel this is a lead I need to be following and will do so until GOD shuts the door. My prayer started out GOD fix Jeremy's spine so he won't have to have surgery, but it became obvious that Jeremy is going to need surgery. I moved on to GOD please send me to the surgeon & facility you have picked out for Jeremy. We still see Dr. Phillips in Tulsa, I feel strongly about him, his name keeps coming up. It might be me seeing them both, getting their opinions, praying, consulting with Dr. Cyrus and Anagnost. I'm praying that GOD makes the choice clear to me.

Friday, October 9, 2009


Jeremy has been saying, I want to see that. You know he is saying, I want but sometimes after it's hard to tell what he is saying.

Friday, I called a referral network from St. Louis and got referrals for 2 Pediatric Orthopedic surgeons that are spinal experts. I know my insurance will cover it as in-network as long as they are participates of BCBS of MO, in which they. I'm checking w/ Oklahoma Health Care authority to see what medicaid will do with us going out of state. I didn't get this info until late in the day. Dr. Lawrence Lenke and Dr. Keith Bridwell, they are partners. I pulled them both up on the web and what I read on some of the cases, they have done some pretty impressive procedures with good results. I'm going to call the office next week, explain about Jeremy and see what they say and see when we can get an appointment. They should also be able to tell me about the insurance as well. I don't want to drive 6 hours and it turn out like it was in Shreveport. I just want to be where GOD wants us.

I've been praying about buying a new car. When that guy backed into me 2 months ago at the gas station just sitting there and it smashed my door almost in 1/2 it made me think. Jeremy is getting older, bigger, he was too close to the front in my small car and getting harder to get in and out of the small car. My insurance rented me a vehicle while mine was being repaired, it was a Kia Rondo. I got to test drive it for 2 weeks and I loved the way it drove, it got about 20 miles less than my car did on a tank of gas. My last car was a Kia and I loved the car, it was a good car. It is getting older, high in mileage and if I had to take Jeremy out of state I wouldn't feel confident. Kia offers for 5 years or 60,000 bumper to bumper warranty including roadside hazard and then they have the 10 year 100,000 motor, powertrain and that was what drew me to getting a Kia the first time and discovered they are well made vehicles. I started my research, safety, payment and insurance. It's one of the safest vehicles on the road, payment will be about what my car payment was, my company credit union is offering 4.49%, they take my payment out of my check bi-weekly so you actually make one extra payment a year and I got a higher quote than what I was willing to pay, insurance will only go up about $12 a month but again I got a quote on a 6 cylinder knowing that I was going to buy a 4 so my insurance should not be much difference you get a discount for buying a new car. I went yesterday to the last Kia dealer I went to with all my knowledge tucked away, prayer if this was meant to be GOD guide me and let me know plus the price I was willing to pay. I got there about 12:30pm and left at 3pm with our white 2009 Kia Rondo. Jeremy sits in the back better and has been excited to check out the new vehicle. I like him being farther back from the front,he is easier to get in and out of it and more room. I don't go and just buy a car, I have to research, know the nuts and bolts.

Tuesday, October 6, 2009

Pouring my heart out...Very confused day...

I am confused at this point and somewhat disappointed in the whole process. I am emotional, pouring my heart out to GOD to let me know where to next. I think the frustration is I didn't get any questions answered and no issue resolved. I really thought we would have a surgery date today. We see Dr. Preston Phillips on Oct 30 in Tulsa to get his opinion. I will also be looking for a physican referral to St. Louis children's, I will start calling them in the next few days.

It was not a good idea to ride the van. I just thought this way I don't have to get anyone to go with me and we will have a Jeremy and mommy trip. We were fine. Jeremy is a good traveler but he does his own thing, which normally includes lots of music toys but I figured it would drive everyone crazy so I opted for the little cow, pig and duck well the duck has this really LOUD Quack (probably why Mr. OCD kept pushing it a bazillion times). I'm totally accustomed to all of these noises but it drives other people crazy. Then he kept wanting to touch the little boy in front of us, he kept asking me tell Jeremy to quit touching my seat belt, tell Jeremy to quit touching the back of the seat. It got stressful on me because I was trying to keep him from driving everyone crazy, I got cranky, Jeremy got mad and bad situation worse, he was tired, hungry and frustrated.

Jeremy doesn't do well with clinic settings, he would check in one place, see a tech who does your vitals, takes you to X-rays, then sends you back into a room with a nurse to go over Jeremy's medical history, move to another room, see a PA, then an anesesthologist, and then finally a physician, Jeremy thinks when you open the door he is finished time to go. Shriner's in Shreveport is not equipped to handle a complex child like Jeremy, they don't have a cardiologist so Jeremy's cardiac history although he is doing great with his heart scares them. Dr. McCall feels that Shriner's in St. Louis or Chicago would be the best and they would refer us, I was feeling good about that. I asked Dr. McCall about the surgery what they would do and he basically said he needs to have his spine fused, not to hope for any correction at all, the goal would to keep it where it's at so it won't progress any more, I was ok with that. I asked him about the spine rotating in and he said, "it is what it is" and at that point I shut down and it didn't matter what else he had to say and I asked no more questions. When the care coordinator came back in to talk about St. Louis, I was handed the number to St. Louis Children's when she called Shriner's in St. Louis they told her they refer children like that to St. Louis Children's. GOD shut the door to Shriner's in Shreveport and I no longer have to wonder is this the place or is he the physican, because I know that is a big NO.

Continue to pray that GOD gives me wisdom into the situation, the physican, facility, procedure. I am struggling. I keep saying it's not fair, why does Jeremy have to deal with so much medical procedures, tough surgeries, it's not fair. It is tough and it's going to be a tough surgery, recovery on Jeremy, right up there with his major open heart surgery.

Here is a pic of Jeremy playing on a tractor. He had fun playing and was very excited at that point...

Monday, October 5, 2009

Snick Snack

Jeremy came home from school Friday and said, "I want snick snack" so that is our new term for snack. I'll take what we can get.

We left Tulsa a little after 8:15am, we arrived safe and sound in Bosier City at HoJo around 3:30pm. Jeremy weathered the trip well, there was a few moments of boredom. I am going to call something in at their cafe, we will make the journey to go pick it up and come back to the room. Jeremy has already turned on the TV, found the microwave and has stuffed all the coffee stuff into the ice box and he is thumbing through the travel guide so I know he's exhausted and having his down time. Here are a few pics, one of us in the van leaving this morning and then one of him in the motel him being exhausted... We have to be ready to leave at 7am in the morning for our appointment...

Friday, October 2, 2009

I want drink.....

Yesterday when Jeremy got off the bus, I was taking him to respite so I had him a small can of spaghetti-o’s (which are his fav) he hands it to me from the back seat and says, “I want drink”, I was so excited, he has never said that before and I told him you want a drink and he goes, “um yea” like yes mom that is what I said. He thought the can of spaghetti-o’s was his can of pedisure they are the exact same size. Jeremy says I want all the time but he’s not always clear on what follows.

I took the opportunity to go to the hospital last night to visit families since Jeremy had respite so when I got home it was time to get our stuff ready for bed. I am truly blessed beyond words, with friends, church, and a support system of people. I had a friend who sent me a sack full of snacks for us to take on our trip to Shreveport. Jeremy got the sack and I agreed to let him have 1 container of gold fish which he loves, so he brought them to bed and we laid in bed, he ate goldfish and would give me a goldfish, he would eat one, give me one, this went on and I had to kiss his little sweet angel face and tell him thank you for sharing.

Today was another new awesome, weather day in Oklahoma. Jeremy got up in another Happy, Awesome mood, he was jabbering, singing on the way to latch-key and it’s funny each day when we pass Wal-mart he says very loudly, “NO” his school is on the turn off right past Wal-mart. We have the talk, and I make it fun saying Jeremy is going to school, they love Jeremy, you are going to learn so much, have fun, see your friends and everyone would be so sad if Jeremy wasn’t there and then he starts laughing.

Please put us on your church prayer list, your prayer list. We leave Monday for our appointment at Shriner’s in Shreveport. I am riding the van since it’s just Jeremy and I on this trip. We will meet with Dr. Richard McCall, Chief of staff at the Spine-scoliosis clinic. I should know details of the surgery, recovery process, the rehab part of it and a surgery date. I’m going to go ahead and schedule the surgery it just makes sense to get it on the books, if something happens and we decide to do it elsewhere it can be cancelled but if that is the place we are to be we are one step in the right direction. I am taking my laptop and will update Monday evening when we get there and settle in. The motel has 24 hour food service so I can order us something there and we can stay inside the room, let him unwind and explore, explore, explore and then we can go walking around the motel. I’ll try to update Tuesday on all the information but it will probably be late Tuesday evening.

The first Friday of October, is always marked for our Central Vo-tech in Sapulpa to sponsor their chili cook-off they do it downtown at our gazebo, it’s like a little festival. You pay $5 and can test all the chili you want. We started about 5 years ago a group of us from the office will walk downtown. It’s fun, social event for me you see lot of people in the town of Sapulpa. It’s just another reminder to me, the cooler temps, the chili cook-off, everything starting to turn colors of my FAV season, we will gear up for fall carnivals, then Thanksgiving (YUM YUM) and then Christmas.
Here are a few pictures of Career day at Jeremy's school, I had to cut out the other children's pictures so that is why there is white.