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Saturday, December 26, 2009

Another Christmas Holiday

For everyone who wanted a White Christmas if you were here in "Okie" land you got one. I wasn't one of them, I had plans and don't like them to be disrupted which included being around my family. I only have to travel to Kellyville which is about 25 minutes to my parents house but wasn't sure if we would be going. We got up Christmas morning to an awesome, bright shining sun. I took a little test drive around town in my new car to see how it handled this stuff, it was easier to navigate, stop and go then my smaller car was. Jeremy was buckled in and off we went. The only trouble I had was a hill by my parents, you have to go down a hill and then up another hill so there was no time to build up speed but the car dug in and up the hill we went. We came home before it got dark, didn't want to drive home in the dark. My mom started a tradition a few years back, where she bakes a ham and we all bring snack foods and we munch, my dad makes taboli, not the traditional Christmas dinner but we all like the freedom of not having to cook. We ate, the kids exchanged gifts, ate, we played dirty Santa, ate, set around and played with kids toys, ate, visited, ate and then ate more. I think all I did was eat. Jeremy got a tonka set, granny got him some new PJ's I put on him last night and he looked so grown up. I watched him last night for about 15 minutes play with his little firetruck, just like a little boy does. I was going to buy Jeremy a new doll, he loves to play with them, take care of them but he's outgrown them and is now starting to play with his little trucks he has, oh and his new tent and tunnel. I got up this morning, purchased us a new 7 ft. pre-lit Christmas tree, that way if Jeremy takes off all the ornaments it would still look pretty. I also got decorations for the outside, which included a 6 ft inflatable snowman, 4 ft inflatable bear, some star and candy cane icicle lights, a door decorations, and some pathway snowmen lights. We haven't decorated the outside, but Jeremy is getting older and think he might enjoy it. I took down the tree and all the decorations today and boxed them up and put back in storage.

I also found out that on Wed we go see the new physician in Columbia, MO on Thursday, January 28 to get his opinion, find out what his plans are.

I am off until Monday, January 4, it's suppose to be cold and rainy so not sure what we will do but I can find something inside for Jeremy to do.

Thursday, December 24, 2009

Merry "CHRIST" mas !!!!!




I wanted to take this time to wish you all the Very Merriest “CHRIST”mas and hopes for a blessed New year. In the past, Jeremy will continue to mess with the tree until there are no ornaments but this year he's pretty much left it alone. This year I started putting one present at a time under the tree, but yesterday I got them all wrapped and put them under the tree. The discovery continued and he started to put at least one rip in each package.

2009 brought many new blessings to my life, new growth, many new friends, continued friendships, reunited with my “bestie” from High school but it also brought on new struggles, some I wasn’t expecting, some that are on-going. The one that I’m still struggling with is the fact that Jeremy’s scoliosis rapidly progressed and started to rotate inward, so we can no longer take the wait approach we have to act and we are in that process now. These words sent me back to the land I’ve visited many of time in Jeremy’s life, of “why” “why me” “why Jeremy” “this wasn’t in my plan” “this wasn’t supposed to happen” “hasn’t he went through enough”. I was reminded of a song that a friend sent me when Jeremy was first born and I was struggling with the storm in my life, “Sometimes he Calms the storm”, by Scott Krippayne. He can calm the storm, I know he can, he doesn’t have to, he doesn’t always chose to do so which is in my case, but he’s calming the child. Growth is hard and it often hurts. If you don’t know the song I have it posted it on my face book or you can go to YouTube and search it.

Sunday, December 20, 2009

Holiday season....

Jeremy has been increasing his vocabulary, he's been saying, "I want that" I want to see that" "I want snick snack" and even last week Stacie our SLP got him to say, "OK". We are going on the 3rd week of having Barb, an OT come to the house. Barb is working on some sensory, vision therapy to help Jeremy. Stacie and Barb work together to get the most out of Jeremy, it's been an awesome 3 weeks. I was looking over some of his past pictures of the 1st 3 years of his life and with what they first told us Jeremy would do and what Jeremy is doing. It goes back to my vision, that one day Jeremy will say, "this is what they said I would do but this is what GOD did for me". I can not believe that he's 1/2 way through his 4th grade school year.

Friday was our last visit with our 3 OU students, we of course had another great group, they were awesome, eager to learn about Jeremy and what life is like. They come to the child's home, to learn about the child, family life & what the family goes through. They then try to visit the child outside the home in the community. Then they are required to research the child, which is always interesting to me since there is not a great deal out there on FG syndrome. Their final project is to come up with a plan. I'm all about new eyes on Jeremy, I think the more brains we can have will only make his life better. I want Jeremy to thrive at school, his community and when he gets older my goal is for Jeremy to contribute to society in what way he can. That is going to require he makes friends, be able to make friend with his typical developing peers, a major goal I've had for him many years. The students came up with some really neat ideas. Jeremy doesn't really interact with his peers and we've got to work on that and change it. He can interact with adults but it's because that is what he's been around most all his life, his therapy is play and who does his therapy, adults. The school has him a peer buddy, but after the 1st of the year I'm going to work with the school to see how we can build on this, get Jeremy to interact with his peers. The students came up with a little story you can laminate and read to Jeremy, about saying "hi", "bye" and "sharing". I haven't got to sit and read the report word for word, but will as well will be brainstorming ways to get Jeremy to interact with peers.

Jeremy is out of school until Tuesday, January 5. I have to work 3 days this week and then I'm on vacation until Monday, January 4. This is the 1st time in many years I didn't schedule one appointment for Jeremy. I normally am trying to make sure we get all his appointments caught up so we end up doing nothing but run the whole time. This will be Jeremy & mom time, we will sleep in, depending on weather may go to the zoo. I'm excited about Christmas, got a late start on shopping but got it all done, almost all wrapped, Christmas eve Jeremy and I are going to decorate a gingerbread house instead of cookies. I'm of course excited about Christmas day, spending time out with my family, we always have a great time, visiting, grazing. Then the day after Christmas I'm going shopping for a new Christmas tree & some decorations.

Here is a picture of Jeremy from school helping to decorate their gingerbread house....

Sunday, November 29, 2009

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.

Wednesday, November 25, 2009

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 !!!!

Thursday, November 19, 2009

The cutest little turkey boy....

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



Tuesday, November 17, 2009

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.

Thursday, November 12, 2009

Jeremy matches words....



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

Wednesday, November 11, 2009

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

Tuesday, November 10, 2009

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...

Monday, November 2, 2009

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....

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

Plans....

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

Research...

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.


Friday, September 25, 2009

Wonderful, Awesome Morning....

Today Jeremy started morning latch-key which is an adjustment for us, I had to get up early be ready, he had to get up get ready and be out the door by 7am, so I can drop him off and make it to work by 7:30am…. WHEW. It was an awesome, cool, morning, great weather and I love it. Jeremy was in an awesome, awesome mood, laughing, really chatting up a storm this morning. I asked Jeremy this morning, do you remember when mommy had a different car, how much bigger it was, you were a bazillion miles away, I couldn’t touch you, he was laughing, do you think I should get a new car like that? and with excitement he screams, YEA. I’m sure it was the excitement in my voice but we were having fun. A month ago, this guy backed into my parked Kia and smashed the driver side door in, my insurance rented me a Kia Rondo. A Kia Rondo is their version of a new station wagon, it’s bigger than my little spectra, gets about the same gas mileage. The first day I let Jeremy get in the car and sit his eyes got big and he looked like this is different and I was playing with him, “where is Jeremy at, I can’t reach you” so it was a big game. I really liked the vehicle. My car has been paid for almost a year, but it’s getting older, higher in mileage, but it runs great. I started the research of getting a Rondo, checked out insurance rates, approved through my credit union, have a price in mind when I go to the dealer and have an estimate of what I can get it for.
Today is Career day at school so I always dress Jeremy in his current OG&E lineman’s expo T-shirt from Sapulpa District……GO OGE ORANGE. I coordinate getting our OG&E serviceman there with our big orange truck, the school & children love OG&E, Greg is so fun, interactive with the children and they get to come up and see the truck, the tools. The school promised to get me some pictures of him by the truck so I’ll post what I get later today. I’ll be going up there later to see how it’s going but I don’t know what time Jeremy’s class goes around.

Saturday, September 19, 2009

It's not fair.....

I've been saying this lot since last Tuesday and processing information but wasn't ready to post until I spoke to our physicians to make sure I understood where we are at in this process and what is the plan. I also have to deal with all of this before I can communicate it.

Jeremy underwent a 3 hour extensive MRI last Tuesday but I know why our physician wanted that, he had areas he needed to see. My prayer has been, for GOD to heal the spine without surgery, not have to deal with surgery for several more years to never and believe me never was my favorite word. The scoliosis is progressing and starting to rotate inward so we can no longer take the wait and see approach, this much is agreed upon between Cyrus, Anagnost and me. We are heading toward getting it fixed and he suggested within 6 months.

I spoke with Dr. Cyrus who told me that me that Jeremy has a ligament around his vertebrae that is loose, we do nothing about it, it's what it is he said we just wouldn't want him to ride a horse that is jogging or do a high jump at special Olympics, not a problem. Nothing Jeremy does at home or PE at school is going to do any damage, we are aware it is there. Jeremy also has fluid around his spine but again it is what it is, not uncommon with hydrocephalus. We will be seeing Dr. Marouk our NSG at some point.

Dr. Anagnost doesn't feel Oklahoma would be the best place for the surgery, he said we need to be somewhere that this is done frequently since Jeremy's complex, the spine is the spine and once you fix it you fix it. He needs to be where they can handle the worse case in case it happens, not wait until it happens and then realize we weren't prepared. He also admitted he's not familiar with what all they have done over at St. Francis Children's since the new facility. I did ask what he would do, he said he would do a 2 part, deal with the rotated spine first which would be enter from the front of his chest to fix it, put him in recovery, stabilize him and several days later go back for surgery to fix the spine from the back. It could be possibly 5 hour surgery both ways, verses doing it all at one time. He said they could use a growing rod or choose to fuse the spine, that is really a decision once you get in there. If we fuse the spine Jeremy's spine will not grow anymore, his torso will be what length they get after surgery is that a bad thing, not really.

The plan is to go to Shriner's Oct 5 & 6 for our appointment to get their opinion. I have an appointment with Dr. Preston Phillips in Tulsa on October 30 to get his opinion. He suggest we make an appointment with an Orthopedic surgeon in OKC to get his opinion as to what he thinks. I guess at that point we take what Anagnost, Shriner's, & Phillips says and make a decision.

Trust in the Lord with all your heart and do not lean on your own understanding. In all your ways acknowledge him, and he will make your paths straight. Proverbs 3: 5-6

My prayer request is specific, GOD send me the surgeon, facility you would have us to go. If that means Shrine's in Shreveport, St. Louis Children's, Tulsa or Louisville, KY.

Wednesday, September 9, 2009

Family Reunion...



For the past 20 years plus Labor Day is the weekend for the Smother's Reunion, that is my mom's family. Last year I was going to let Jeremy experience camping but he broke his leg at my OG&E lineman's expo so we went for the day. This year I was geared up and ready, borrowed a tent from my sister and camped next to her RV and a tent w/ her 3 boys next to us. My brother in law cooked us breakfast each morning which was awesome, something about camping out and eating breakfast. Saturday night we had a campfire and roasted marshmellows and had smores, oh they were good. I limited myself to 2 small ones...It was wonderful time away, the weather was awesome. It did get hot a few times but not like it could be for the 1st of September in the Great state of Oklahoma. We came home Sunday evening to recover, I need the day to get back to life.

Jeremy has his brain/spine MRI scheduled for September 15, we check in at 6am and his test is at 8am should last about an hour or so, I'm estimating we should be home around noon if not before. I have to take the films and report to Dr. Anagnost, once we get our new brace we go back to Dr. Anagnost for results and X-ray in brace. We have an appointment with Dr. McCall at Shriner's in Shreveport on Oct 6. I want to see Dr. Anagnost before our visit to Shriner's to get his opinion of the MRI before going to Shriner's.

Friday, August 21, 2009

Jeremy's 2nd day of 4th grade

Jeremy is officially in the 4th grade, he's adjusting quite well. He's been tired, but that is typical for him.

Here our a few pic that was taken today, him getting off the bus and then walking to the house. I was looking at the pic of him getting off the bus last year and he has really grown over the summer.


Thursday, August 13, 2009

Not so great news...

The X-ray we took at Dr. Anagnost office on Tuesday showed that it looks as though the scoliosis has progressed a little more, but that wasn't the worst news it has also started to rotate in which it hadn't done that. That is the reason he is started to get a hump even more prominent on his back. Needless to say he wasn't pleased, said he was hoping we wouldn't see that until Jeremy was 12 to 13 years old to never. He said the increase could be the difference between the old facility X-ray and the new so that didn't concern him. He agreed that a Spine MRI would be in our best interest, since Jeremy would be out and we wouldn't have to rely on him standing still and getting the shot at just the right time, it could be compared to the one we did 5-6 years ago. He will order a brain MRI at the same time, since we will be scheduled to see Dr. Marouk forthcoming this will save a CT scan later on, plus Dr. Marouk suggested we do periodic MRI. I'm going to coordinate with our orthodist to get him to brace Jeremy while he is out and sedated so we get a good cast. I love Dr. Anagnost because can sit and talk to him and he answers my questions honestly. I asked him would he get a growing rod if he has to have surgery and he said yes, and I asked how long and it depends on the MRI, how well the brace is holding him in. He said it is great that it has not slowed down his mobility or he isn't having any breathing problems or organ issues. Praise GOD for that.

I'm starting research into facilities, he mentioned Shriner's which is an option but he suggested the one in PA since he did his residency there and they did spinal surgeries on kids from the Shriner's but I don't know if I would get that option to go where I wanted. I'm checking into St. Lois Children's, Dallas Children's, I've heard both places do a great deal of spinal surgeries.

Please pray for Jeremy, my first prayer is that he doesn't have to have the surgery that GOD starts healing that spine, but pray for him as he has the MRI, which will have to be under general. Pray for Jeremy's medical team as they start running these test and start consulting each other. Pray for me as I start to make some of the decisions. Pray that if Jeremy needs this surgery that GOD sends us to the physician, facility that he has prepared for Jeremy to have this surgery at.

Sunday, August 9, 2009

Jeremy's 10th Birthday

Today, Jeremy turns 10 years old. It's hard to believe that 10 years ago we entered St. Francis Hospital at 6am, after carefully looking around the nursery one last time and telling the baby, "this is it, this is the day that I finally get to meet you and you get to meet mommy". I was so excited not knowing if we were going to have a Kayla Dawn or a Jeremy Ray.

Jeremy Ray entered the world at exactly 9am by an emergency C-section, shortly after Dr. Lunn (My awesome OB/GYN) broke my water the baby's heart rate started dropping dangerously low, it was determine the baby was in fetal distress and off we went. I was so scared and prayed to GOD, once they told me the baby's heart rate was so much better I felt better. It was the most awesome experience I've ever had was to be shown my baby boy for the first time and look into them precious eyes, knowing this is what I've been doing for the past 9 months. Jeremy did overall fairly well that day, had apgar scores of 9 and 9. It was 12:30pm when our Pediatrician, Dr. Scott Cyrus came in and told us that he suspected Jeremy had hydrocephalus. I've said it before it didn't matter what Dr. C said to us all I heard is there is something wrong with my baby. Jeremy had to go into EOPC that night, and the ride down there was so lonely, scary, you just know if your baby is there they are sick, there is some reason they need to be there. Jeremy was going to have surgery the next morning to place his first shunt to help drain the CSF from his brain into his tummy, since he couldn't get rid of the fluid on his own.

Here are some pictures of his birthday weekend, we had his birthday party Friday evening at the Liberty Splash pad, then Saturday we took a trip to the Oklahoma Aquarium. We went to church, stayed for dinner and then evening service.

Happy Birthday to my Miracle Jeremy Ray, whose had endured more the past 10 years then most people do all their life, and has taught his mom more than I ever imagined. I love you and couldn't imagine my life any different than what the past 10 years have been.





Friday, August 7, 2009

Camp Ali

This is an article that ran in our local paper on the Autism camp that Sapulpa schools does. Jeremy is in the 2nd picture he is the very blonde headed boy in the front that has his head turned so you can see his gorgeous face. He really enjoyed it and ended up having a great time. They told me one day he was the only child who would go through the obstacle course that they built...


http://www.sapulpaheraldonline.com/articles/2009/08/06/community/doc4a7b0ae4a24c9489949085.txt

Sunday, August 2, 2009

I want it

This weekend was the 20th OG&E Lineman's expo, I have went for the past 10 plus year and volunteer to work. We went up Friday night and stayed in the motel, I took 3 of my nephews to help out with Jeremy. We got pizza and the boys went swimming in the pool, Jeremy of course had a blast. Jeremy has been jabbering up a storm, and yesterday when we got out of the car there was a toy he left in the car and as we were going into the house, Jeremy said, "I want it". this morning Jeremy got in to his school supplies I had so carefully hid and I caught him taking the markers out of the box and told him they were for school and he needs to put them up and he said, "I want it" I told him I know he does but lets save them for school. I can't wait for school to start and see how much progress he makes, I know he is going to make great strides. I also can't believe that next Sunday, August 9 he turns 10 years old.

Monday, July 6, 2009

OH say does that....

Excellent Independence day weekend, we needed the time to relax and we slept in all weekend. I know I needed it and so did Jeremy. We woke up Saturday to some much needed rain, but it cleared off by about 1pm just in time for some 4th of July fun and celebration. I had ordered some spinach and artichoke dip from Charleston's and I totally underestimated how much it would feed, there was a bunch but we put a fairly good size dent in the container and I told my sister that I wasn't taking any of it home with me. We then moved on to the main course but we were all stuffed. We then played a game of water volleyball no one kept score but I'm pretty sure my team won. I know I pigged out, I went off my diet for this day there is something about cooking out and the 4th of July. We decided on another game of water volleyball and I'm pretty sure my team won again. Then we had a firework display and arrived home around 11pm which was totally late for us and especially Jeremy. When the alarm clock went off on Sunday morning Jeremy started crying, he rolled over and went back to sleep so I let him sleep until noon. Jeremy actually liked the pool this year, he kept throwing his ball, so there are pictures of him waiting for the ball to come close enough for him to get it. The little turkey doesn't want to wear his life jacket, he's so cautious that he will try to get in the pool but when he realizes he can't touch boy he is back out of there that is the upper body strength he has. My sister said I should put him in swimming lessons and I think next summer I will check into that.








Thursday, July 2, 2009

K95.5 Cares for Kids Radio-thon Results

We raised $127,518. K95.5 staff did a GREAT job, the family stories were totally AWESOME. It would have not been possibly without the people who donated the money to help the children at St. Francis Children's Hospital and our new NICU who will be moving over early fall of 09.

Monday, June 29, 2009

K95.5 Cares for Kids Radio-thon to benefit The Children's Hospital at St. Francis

Tomorrow is the radio-thon, it runs Tuesday, June 30 and Wednesday, July 1 from 6 am to 7pm in the lobby of the Children's Hospital. It's awesome the money raised is for equipment, things the hospital needs not salaries. The children's hospital serves many families in NE Oklahoma, they were there to give Jeremy the start he needed in life and they have been there to give him the push he needed along the way. If you live out of town you can tune in at www:k955fm.com and do the listen live or you can tune into 95.5 radio. I will be doing a "live" interview with Jeremy's Wonderful, Awesome, Pediatrician tomorrow morning @ 6:10am, if you want to tune in and hear Jeremy's story.

Wednesday, June 24, 2009

Hot Summer days....

It turned "HOT" in Oklahoma pretty quick and fast, we've had two weeks where the heat index as made the temp over a 100 degrees. Jeremy doesn't mind and still loves to play outside. Jeremy is having a good summer, he's enjoying summer school and has two weeks of that left. He is jabbering up a storm around here, I got a really cute recording of him speaking but haven't had any luck in downloading it. I plan to take Jeremy to the zoo but can't see taking him with these hot temps he would be miserable. I know the temp will drop a little at some point.

We enjoyed father's day with my family. One of my sisters cooked hamburgers & hot dogs, then dad grilled chicken before we all got out there. I was suppose to make a cake but decided a store bought one was better it was alot easier. I did make my famous banana pudding using my Aunt Betty's recipe, it was all gone.

We are just hanging out, June 30 and July 1 is the radio-thon to benefit St. Francis Children's Hospital. I will be doing Jeremy's interview @ 6:10am w/ his favorite Pediatrician, Dr. Cyrus. If anyone is up and around they can listen, you can also log into K95.5 in Tulsa and listen to it live.

Tuesday, June 16, 2009

I am so proud....

Last weekend was my sister and I trip to Eureka springs, we had our massage appointment and that was nice. We had fun, shopped caught the end of the Holy Land tour and that was awesome, wish we would have gotten there earlier to see it all. When I got home, Jeremy jumped in my car helped me carry in all my bags and of course went through all the bags to see what was his. I found him a little jug that has his name on it, 2 really awesome christian t-shirts, gummy bears and some curious George things for his birthday.

He did really well at speech yesterday, Stacie said he focused well and paid attention and he's been verbal, talking like crazy. I have a recording but I can't figure out how to save the audio so I can post it to his blog.

Yesterday evening I took Jeremy with me to buy some groceries and to my surprise he did very well, he helped me pick out some items. He had 3 boxes of the bagelfuls, and I told him he could have one for breakfast he put them all 3 back. We ran into Ms. Vinson his last year teacher and she couldn't believe him. We were back in the "baby" section and we cruised it several times, he found this head holder that you use when the babies are small and in their infant car seat, it had a picture of a baby and I really think he thought it was a baby, I told him he couldn't have it but he put it in the cart and then carried it so proudly thought we were going to have a major meltdown but he got preoccupied trying to help me check out that I was able to slip it out of the cart and keep it from him. When we got to the car I gave him a chocolate milk and he was glancing through the sacks, never acted mad.

Sunday, June 7, 2009

Jeremy going to VBS

I decided to try Jeremy at VBS this year, my mom's church was having it and since he got out of school Tuesday we started on Wednesday and went 3 days. He did fairly well for the most part, he marched in with his class, except on Friday and he decided to set on the opposite side as everyone else but he did sit there for quit a while before acting up. Here are a few pics of him marching in, sitting on the opposite side (the pic is a little dark but you can see his little head). He starts extended school year this week, 3 days a week 2 hours a day.








Thursday, June 4, 2009

Mommy and me....

Jeremy has never said the words, "I love you, mom" but he does say mom and I've also know when he does his jabbering he says it. I've seen it in his eyes, when he gives me one of his hugs or I ask for a kiss. They took this picture at respite care for Mother's day and it was the best gift I could ever in my life receive.

Wednesday, June 3, 2009

Saturday, May 30, 2009

Ah The sights of summer....

This would be Jeremy after splashing in his turtle pool, getting soaked w/ a water gun which he loves and eating a sundae cone, which he loves....He was scaling his climbing wall, turned to make sure I was still watching and did I say how worn out he is. He has played super hard today, so I'm trying to get him to take a bath and watch Wall-E.


Monday, May 25, 2009

The start of summer...

We took flowers w/ praying hands down to Mounds to Grandma and Grandpa Roberts' graveside yesterday after church, this is the 1st time we have seen Grandpa Roberts headstone and it's Beautiful. I miss them both so much and keep thinking of all the things they are missing with Jeremy but then I think they are in heaven with our GOD, what can they be missing. It's me missing them missing these things.

I would say I had a productive weekend and managed to finally get my closet totally cleaned out, I gathered 4 kitchen size garbage bags full of clothes. I cleaned out Jeremy's closet and got another sack full, he can no longer wear his 3T. I cleaned out his toy box and threw away a bag of toys and another 3 bags that I gave away. I feels so nice to be able to hang clothes up in the closet and have room, try to find Jeremy a t-shirt and a pair of shorts.

Jeremy has 6 days of school left, 4 days this week and then 2 the next. He will then do 4-5 weeks of ESY which will be 3 days a week and then attend autism camp 4 days a week from 9 to 1pm. He will have an HTS to be here with him while he's not at school.

He's enjoyed the weekend of playing outside, going to the park, throwing his beach ball around.

Sunday, May 17, 2009

The sounds of summer....

Summer is fast approaching and you can tell by the sounds of the season. Yesterday, Jeremy and I was playing with his soccer ball outside and we heard the Ice cream truck and I ran back into the house to get him some money and took Jeremy's hand and told him lets go get some ice cream and we were walking to the road and I was telling Jeremy let's go get some ice cream and Jeremy says, "i crm" or something similar to that but I know what he meant. I could have paid for 1/2 a box of drumsticks with what I paid for one but it's summer, and memories are important to me. Out of all the sounds of summer my son saying his version of ice cream will always be the best sound.

I'm really excited about summer this year. Jeremy has 2 weeks and 2 days of school and then he will do 4 weeks of ESY, 3 days a week and hopefully 2 week summer camp at school. I'm going to take him to my mom's church for vacation bible school and see how he does.

Thursday, May 14, 2009

A Sad day....

Henry Miller, 20 year old young man diagnosed w/ FG syndrome lost his battle for his life yesterday around 7:35pm. Henry had been in the hospital critical for about 2 weeks but then was starting to show some signs of improvement so I was caught off guard when I read the email from his Mom Mary that Henry had passed away yesterday. I have never met Henry or his Mary but got to know them on the FG family list serve. I have heard many stories and seen pictures of Henry and have celebrated Henry's victories in my heart with Mary and today I cried for the loss of Henry. My heart breaks for the pain and the GREAT loss that the family is dealing with. Henry reminded me lot of Jeremy, the stories Mary would tell. I would look at similarities they had so much in common, Henry had a heart defect had open heart surgery when he was younger, Henry also had severe scoliosis and had surgery to place a rod at an early age. Please say a prayer for the Miller family as they deal with the loss of Henry's precious life.

Jeremy for sale on EBAY....

Last night I picked out my clothes to wear, put them in the dryer (didn't want to get out the iron). It was just a pair of jeans, two shirts. I started to hear this clank, clank, clank in the dryer and opened it up to find that my son had put a jar of picante sauce in the dryer w/ my clothes. There was only 1/2 of it left and the reason why is the other 1/2 was all over the inside of the dryer, and my clothes. I had to wash it out with soap and water. He did this a couple of weeks ago with his 1/2 eaten container of chocolate ice cream but the ice cream washed out, but this picante sauce stained my white shirt.

Wednesday, May 13, 2009

The new look and Jeremy's school field trip

I found this new template, thought this was bright, happy and cheery. The one I wanted was perfect for Jeremy but it wouldn't interact with blogger. It had several monkeys with the saying, "Don't you wish your monkey was fun like me". I've always said he's a monkey and curious George's twin.

Jeremy's class took a field trip to pump it up in Tulsa, it's inflatable toys galore and Jeremy LOVES them. I was a little on the not sure side since Jeremy broke his leg last summer going down an inflatable slide at the Lineman's expo where I work and was in a cast for 12 weeks which wasn't fun. Mrs. Parsons Jeremy's teacher said of all the children Jeremy has the best time and I knew he would. He did end up with a scrape on the right side of his right knee that ended up infected but we were able to do oral antibiotic and a cream and he's healing wonderfully.

Here are a couple of pictures his teacher sent me.