Monday, December 29, 2008

Jeremy's shopping experience....

Jeremy got $25 for Christmas so I let him go and pick out something he wants. We had played outside for hours, took several walks so I told him lets go to Wal-mart and go shopping, Jeremy clapped his hands with excitement and said, "yea". We get to Wal-mart and normally Jeremy hits sensory overload and ends up running through the store like a wild child, but he was so good and did great. Jeremy loves dolls, but he already got one for Christmas so my goal was to steer clear of the doll isle. Jeremy found this little transformer figure he put in the basket, we went down the musical isle and he found a guitar and a musical book and then in the middle of the shelf, with nothing else around it and the only one was this doll named, "Darby". I thought let's not make a big deal and he won't see it, well was I wrong. Jeremy's eyes lit up, he gave me the guitar and ran over to this doll and tried to get it out of the box, I tried to convince him to move on but forget it. It's his money, and the doll was normally $35.98 and he got it for $21.00 so it was a bargain for him. This is what he wanted so I picked up this box which was almost as big as he is and he followed me all the way through the store with a few distractions but keeping his eye on this doll. I buckled him in the car, and he tried and tried and by the time we reached home Darby was out the box. Darby, sings, dances and not only that she says 20 phrases, so I figured it's gotta be good for speech. So anyway we have a new doll name Darby which Jeremy has not quit playing with.

This morning as I was getting ready I could hear Jeremy in his room, singing, talking so I ran in and grabbled the camera and got this video. This is his kitchen that he got for Christmas. He was singing and talking up a store, and when he finally sees me he came out of his room and said, "Hi Ya" and YES this is his room and yes it actually looks like this. Our goal was to clean out the toy box today but didn't make it. (The video may stop several times but please be patient it is a good one of him)

Saturday, December 27, 2008

Merry "Christ"mas

Jeremy has had a nice winter break so far, he stayed home with an HTS on Monday and Tuesday, I had to work them two days. I get Christmas Eve and Christmas day off and then I'm taking vacation and will be off until January 5, 2009.....WHOOOA. We did sleep in on Christmas eve which I can't tell you how GREAT that was. We took a bike up to this little girl in the hospital and Jeremy was really good, he didn't run around but mostly stayed with me and then we came home and baked 2 dozen sugar cookies. My mom always bakes a ham for Christmas day and we all bring snack foods, it makes for a restful, peaceful day. Jeremy didn't get a million toys which was nice, he did get his kitchen which he loves but what he plays with the most is a musical card I got him, go figure. I couldn't believe it I was almost to my parent's house and thought I forgot my camera, I didn't even take any pictures of him Christmas morning so I have no new pictures to post. We then decided to go see a movie so two of my sisters and two of my nieces went to see, "Marley and Me", it was good. Monday morning Jeremy has an appointment with John and will more than likely get casted for a new AFO for his right foot and maybe some adjustments. I'll also have John to check his back brace to see if we need any adjustments on that. Jeremy has speech therapy at 4:30pm on Monday and then that is all for appointments. I'm thrilled that his break is not filled up with appointments. We have sure had some cold days here but Christmas day and yesterday was awesome and Jeremy was able to play outside, but today it's back to being cold so he's going stir crazy having to stay in. Tomorrow is church so he will get out of the house and be around other children and people, it's suppose to be a little warmer tomorrow.

Tuesday, December 23, 2008

Champion Child video

I'm so excited here is the link to the Champion Child video, you might have to copy and paste to the browser but you can see the video we did...


Monday, December 22, 2008

Jeremy and Santa

These were taken at my OG&E Christmas party, Jeremy was so tired when he got home from school and then he went to the party, he played so hard, chased children and he was being chased he was just worn out. He was even sitting in Elijah's wheelchair at one point. Santa couldn't get a smile out of him but finally got a 1/2 effort high five.

Friday, December 19, 2008

The J man at school...

Jeremy's teacher sent me this picture. I'm not sure what he was doing but he was having a good time with that ornery look on his face. Today he has his "Christ"mas party and then he is out of school until January 6, 2009.

Tuesday, December 16, 2008

The big fish story....

I don't know if you all remember the Big mouth bass that sings, well we have one that I inherited during our Dirty Santa that we play at my families Christmas. Jeremy loves songs and he loves that fish, he also has a reindeer that his grandma gave him that sits in a rocking chair and sings, "Grandma got ran over by a reindeer" and he loves that reindeer. He also loves to put things in the microwave, take them out, put them back in but has never attempted to turn it on. That was until Sunday when he discovered that if he pushes the #1 it will automatically turn it on. So, after a great morning of him torching some cough drops I unplugged the microwave to alleviate that problem. I caught him trying to stuff the reindeer in there and I kept telling him that is not going to fit in there, well I was wrong because he made it fit. I had forgot to unplug it when I warmed up his soup. I smelled something that really stunk and I go in there and guess what he had put in the microwave, yes that poor fish, and it was smoking, there was smoke coming from the santa hat it had.
So that is our big fish story....

Friday, December 12, 2008

My funny, independent boy

We went to see Dr. Cyrus on Tuesday to check our ADHD medicine, Jeremy had been showing signs that the current dosage was not working. I've been working with Jeremy when he is getting ready to go to a Doctor visit to inform him of what is going to happen. I took the morning off so Jeremy was able to sleep in and eat breakfast at his leisure in which he enjoyed. I had ordered Dr. Cyrus office some holiday bread from Panera so we ran by to pick up the order. We were entering the driveway to his office and I told Jeremy we are here and he says, "nstop" and I said don't you want to go and see Dr. Cyrus and he says, "NO". When we got into the office I handed the sack to the receptionist and she took back to the break room. When she came and sit down Jeremy decided that he had found him a playmate. I bought a digital camera back in August that you can also tape videos and I thought man that would have been a cute video to capture for his blog, but like many times in the past I didn't have it with me. He initiated play with this girl by playing peek a boo, he would duck down and pop up and then do his cute little tilt back his head, wrinkle his nose and smile a big smile, he does this with people he's never met. Then the big guy (Dr. Cyrus) came out to thank him for the bread and Jeremy absolutely wanted no part of the thank you, he was too busy flirting. We adjusted the medicine. When we left Jeremy took his place going around to all the girls in the front office to see what they were doing, he helped Kara by putting away several of her items and then trying to get him to leave wasn't easy.

This spring we are going to search for Jeremy a new puppy. Tracker the bird dog whom we've had since Jeremy was a little over a year old passed away about 3 weeks ago. Tracker was so tolerate of Jeremy, would let him pull his ears, pat him sometimes harder than he should. When we go outside to play Jeremy looks around for Tracker so I know he misses him. It's funny they use to fight over toys, Jeremy would sit down a toy and tracker would come get it and take off running with it and Jeremy would yell at him. One time I heard Tracker growing and Jeremy screaming. I turn around to find Jeremy trying to get back his plastic chocolate milk jug that he was finished and threw it on the ground, tracker took the opportunity to take it because he loved to chew, Jeremy wanted it back and tracker didn't want to let it go. It was funny.

Tomorrow morning (Yes, I will take my camera with me) is the Kellyville Christmas parade, we are going to go and meet my mom, two of my sisters with their children and watch the parade it starts at 11am, then we will take Granny home maybe do a little shopping at Wal-mart and then we are going to put up our Christmas tree and Mickey mouse town, the plan was to put it up last week but we didn't make it.

Friday, December 5, 2008

Jeremy's ears....

I took Jeremy to see Dr. David Hall, our ENT to check his ears. Jeremy has been pulling on his ears so I was afraid that he might be getting fluid build up. Jeremy has extremely small ear canals so he got his first set of tubes when he was 9 months old, we've had adenoids & tonsils removed and about 5 sets of tubes. The last set of tubes were T-tubes and they are suppose to last longer and normally have to be surgically removed and that was almost 3 years ago. We are assuming that the tubes are out of his ears, but the GREAT news is his ears look GREAT there is no sign of fluid build-up so Dr. Hall said this may be a sign that he is outgrowing the need for tubes. He thinks that the pulling on the ears might be due to he's got some wax and the tube looks to be laying right along the ear drum so he said that might be itching him. I'm going to use debrox in his ears twice a week to see if it will loosen the wax up and hopefully come out of his ear. Dr. Hall hates to clean out Jeremy's ears because he is so active and he's afraid he will accidentally puncture his ear drum. If Jeremy has a procedure where he has to be out I will coordinate with Dr. Hall to come over and clean his ears out really good and check out his ears, that is the way we normally do things.

Jeremy continues to be vocal and amazing me. Last night I had to meet his SLP to pick up an item and I told him he had to stay in the car and it sounded just like he said, "I get out". He also does this occasional growl, like Tim the tool man taylor does and it cracks me up. He had seen this SLP in 3 years and when she open the door to tell him "hi" he did his little crinkle up, cheesy shy smile which is flirting.

Monday, December 1, 2008

Thanksgiving Holiday !!!!!

I went up Thursday to the Children's hospital to help them serve dinner to the families who had to be there over the holiday. I can relate to being in the hospital during a holiday and the emotions that go with it. I always love meeting new families and getting to minister to the ones I've met in the past. Jeremy had a good holiday, we stayed home until Saturday when my mom had our family dinner. Jeremy was so tired when we got home and you would think he would crash but it works just the opposite with him and he didn't sleep hardly any. I was fixing my homemade noodles on Friday evening, Jeremy was up on the cabinet helping me I turned my back for just a split second and he had poured the whole can of baking powder into my boiling chicken. I can't complain he's trying so hard to help and wants to cook and help. When we got out to my mom's Saturday she told Jeremy to go put the milk in the ice box and he did it.

Jeremy has an appointment on Wednesday with Dr. Hall our ENT, he's been pulling on his ears and we know from our appointment in March that one of his T-tubes is out. He's not had any infection and has not been sick but we need to address this, we don't want him to get built up fluid. He's not been as verbal but that comes and goes, but he's been doing this high pitch squeal of AAAA and it sends chills up and down my spine. We go next week to our pediatrician to look at our medicines. Jeremy has not been wanting to focus at school and at home he's been a bear, aggressive, impulsive and not wanting to listen pretty defiant.

Monday, November 24, 2008

No I don't want to go home.....

Saturday I had an Oklahoma Family Network staff meeting from 9:40am to 4pm. I had asked my sister to keep Jeremy because my mom had kept him the days I was in Utah so I didn't want to abuse that privilege but I have a friend who I met through my work with OFN and the Children's Hospital and she told me last summer if I ever needed a babysitter they would love to keep Jeremy. I asked her and she was so willing, plus Jeff and Lori have 5 children and 2 are younger so I knew Jeremy would have a blast and a blast he had. When I went to pick him up and the door was open he was at the door with everyone had a big ball in his hand and was shaking his head no and saying, "NO", that can make a mom feel good. Jeremy spent the day playing with the children and Jeff and Lori. He whined most the way home until he fell asleep.

Friday, November 21, 2008


Jeremy will surprise me so many times, he is so funny. The other night Jeremy told me "topp". He just continues to jabber jaw away, there will come a day he will start talking and with the two of us no one will get a word in.

Monday, November 17, 2008

To GOD be the glory !!!!!!!

Early Thursday, Nov 6 we lost a precious person in our lives, Grandpa Roberts, he had battled colon cancer for almost 9 months, I plan in the upcoming weeks put some pictures of him and Jeremy on his blog. Grandpa Roberts LOVED Jeremy with all his heart, they had a really special relationship as me and him did and I'm grateful for that in our lives and I will miss him deeply.

That is one of my favorite hymns to sing, To GOD be the glory great things he has done, so loved he the world that he gave us his son. I was blessed this past week with an opportunity to go back to Salt Lake City, UT for a conference on sibshops. I love Utah it's a beautiful site. I loved the drive from the airport, the walk to the restaurant, looking out my motel window, the conference there were mountains everywhere. I really learned lot about what siblings of children with special needs deal with, they deal with lot of the same thing that parents of children with special needs. It breaks my heart, but grateful that we were able to start sibshops here in Tulsa on a monthly basis. I was glad to get back in Oklahoma especially after we landed in Denver, CO and it was 28 degrees and I could see my breath while waiting on my luggage. I landed back in Tulsa at 11:59pm. Jeremy was sleeping when I got home but I made enough noise he woke up and came into the bedroom. When we got up the next morning he seemed excited to see me but looked right past me to get my mobile phone. Jeremy made it clear to me he was ready to eat, so we came into the kitchen, he climbed upon the cabinet by the toaster and was sitting there playing with my phone and I got really close and kissed his little cheek and said, "Whatcha doing?" and he looks at me while playing with my phone and says, "Nuttin". Yes, Utah was so beautiful but I am a born OKIE and tend to talk that way. Thank GOD for mommies who love their daughters and even when we have children of our own and in our 40's she came and took care of Jeremy, kept my house clean and did some of my laundry. Thank you GOD for little boy's who miss their mommies when they are gone. Thank you GOD for all the beautiful, wondrous world that you created. Thank you GOD for sending your son Jesus and that you deemed me important enough to save me from my sins.

Tuesday, November 4, 2008


Jeremy was doing speech therapy with Ms. Stacie and he loves the baby doll she brings, she uses pictures and signs to get him to request what he wants. Jeremy was snooping in the bag because he likes the dishes she brings and likes to feed the baby. We were sitting there and he says, "ack" I looked at her and said he said, "snack" and she agreed, I gave him his trail mix and he took a handful, tried to feed the baby and when she wouldn't take it he instantly took it for himself. Jeremy also signed the word, "eat" only after Stacie doing it one time yesterday, and he's not done that in a loooonnnnggg time.

Monday, November 3, 2008

Our Fall Festivities.....

On Friday, October 24 we had our Oklahoma family Network reunion at the Orr Family Farm in Moore, OK. I didn't want to take Jeremy by myself so I bought tickets for my mother, sister and niece to go with me. I was excited and knew that Jeremy would LOVE being in the outdoors and free to roam, pet animals and play. I had gotten my directions off of Yahoo and they were way off, we were over an hour late. We got to eat hot dogs, they got to pet animals, ride a horse, milk a pretend cow. Here are a few pictures of our adventure. We stayed until 8:30, by then Jeremy decided he was hungry so we stopped to fill up the car, drove across the street to McDonald's and arrived at our house around midnight, it was funny Jeremy would not go to sleep on the way home but there was activity in the car but after we dropped Granny off he passed out before we got on the highway to come home. Here are some pictures of our adventure, Jeremy loved petting animals we couldn't get him to come out of the pen.

That next night was his school carnival, I worked the concession stand and can't tell you how many chili dogs, Frito chili pies, pizzas and nachos that I served but it was fun and we raised money for the school.

Halloween I didn't get Jeremy a costume, I put him in his Incredible Hulk shirt and his teacher painted his face green, I was up at the Children's Hospital helping with the carnival and when I got home Jeremy was sitting on the couch with a toy in his hand passed out. I would say with that he was worn out with the fall festivities.

Sunday, October 19, 2008

Fall Break !!!!

The Friday before Jeremy and I went to spend the night with my parents who live in the same house that I started 1st grade in. They have about 3 acres of land and it's prime roaming territory for Jeremy. It is peaceful out there. We slept with the windows open and my dad has a flower garden with a fountain right outside the bedroom window so we got to hear that all night. My mom still hangs clothes out on the clothes line so all the sheets, blankets smell so fresh and I still love that feeling of spending the night at home. We got up that next morning and went to visit my mom's sisters and her grandson, Justin. The two boys had fun playing outside, Justin has a playhouse and they both looked like they had rooted in the dirt. Then we came home to 2 days of school and work and then off for 3 days for Fall break....

We slept in on Wednesday, got up I fixed Jeremy pancakes for breakfast and we went to get his flu shot (Jeremy wasn't happy) and then we went on to the Kaleidoscope Children's Museum where we spent over 3 hours. We met Matt Cobb our teacher through ETL and did some behavior therapy.

This is the big doll house and Jeremy loves this, this is where we spent most of our time.

They had a dentist/physician office and Jeremy didn't care (can't imagine why). There was a reverse walker exactly like the one he use to have and that is what he wanted to play with...go figure that.

The sensory room, Jeremy would go in but normally came right back out of, I think it was the feeling the flashing lights gave him and it was harder for him to see (he had broke his glasses and they were being repaired so he didn't have them). I did manage to get some sort of picture of him and Matt.

Now for the pictures of the big build, this is the park they built in Sapulpa the children love it. Jeremy's school takes a field trip there each year and he loves to climb on everything and have the freedom. We met my sister and her daughter Miranda. I also found Jeremy's handprint, when they were building the park they got the schools to make prints of the children's hand and they lined the walls with them. It took me a while but I found Jeremy's, he did this when he was in Kindergarten almost 4 years ago.

Monday, October 13, 2008

Snack Please and that's Yummy

We have been working on getting a device that talks for Jeremy since last May, it's not an easy process. You have to send a video to show that Jeremy can use the device and can be used for medical purposes. His speech teacher programed the device with snack please, drink please and that's yummy. This was right after school and he was starving, he kept hitting the snack please button. I was tempting him with the drinkable cereal straws that were fruit loot flavored, he doesn't like them in milk but they make a good snack.

Then we got him to push the button to say, that's yummy. The device is also beneficial that it will help his speech come along as well. He's been very vocal.

Friday, October 10, 2008

J at school

Jeremy's teacher sent me this picture that his para-professional took at school and the note said, "Jeremy has been really active today, right now he and Ms. Shelley (another para in the classroom) are chasing each other." His glasses didn't make it to school today for some reason. He looks like he is having really funky hair day not sure what that is about, other than he must have been wrestling around or the fact that he so needs a hair cut.

I am not a proud mom or anything but how can you not LOVE this face he is so darn cute and adorable.

Thursday, October 9, 2008

My big boy

This past week at school Jeremy rode the school van home. When I opened the door to get him off the van there sit my son and he didn't move until I unhooked the seat belt. The driver bragged on how well he had done. When he got home yesterday I told him I needed to go somewhere so go get in the car. Jeremy is so funny when we go somewhere he grabs what he can to take with him, so he comes out the door with his backpack and that wasn't enough he had discovered his flash cards so he grabbed them on the way out. He climbs into the back seat of the car totally bypassing his car seat (as if to say I'm too big to sit in that baby chair and no Thank you). He went to the other passenger side and sit down, he grabbed the seat belt and tried to latch it himself. I agreed to his request since the bank is not that far and he knows if he doesn't sit he looses that privilege. I tilted my mirror so I could watch him and my big boy sit there, being really good, talking up a storm and flipping through flash cards. I'm going to buy him a booster car seat and start giving him the opportunity to sit in it. He is always wiped out by the end of the day, normally wants a nap and I have to battle with him to not take a nap (yes I know am I crazy, a nap would be great but then he's up late and I don't get to sleep). I was running his bath water and he was so tired, screaming crying and upset and then all the sudden silence and I look over he had fell asleep in the doorway of the bathroom. I felt so sorry for him and decided to see how long he would sleep but and shortly thereafter he was awake crying so I bribed him into taking a bath with a cold cup of chocolate pedisure..yummy yummy his favorite.

Friday, October 3, 2008

Are you Ornery ?

Yesterday I was reading Jeremy's daily folder to see the teacher's notes, how his day went and we go over the paperwork he did that day. The teacher wrote, "Jeremy was not into doing much work today, and he was being ornery". I read the note to Jeremy and asked him was he being ornery and he was pretty insisting in telling me, "NO", not once but several times. Later that evening when I was talking to my mom on the phone, I told her to ask Jeremy if he was being ornery at school and the little turkey hands me the phone and wouldn't listen. I asked him later and he finally said, "hum yea", so we had a little talk. This picture was taken at school yesterday with his teacher and she said he was also real huggy and kissy yesterday. He's been doing really good work, paying attention, able to focus and listening.

Monday, September 29, 2008

Introducing CEGM Jeremy

The world has Curious George, Dora the Explorer and Go Diego Go, I'm not jealous because I have the one and only CEGM Jeremy (Curious, Explorer, Go, Master, Jeremy). Just in time for Christmas is the one and only life size action figure, this action figure comes complete with everything you need, no batteries required and ready for action and if you call within the next few days you get free delivery anywhere in Oklahoma. I'm telling you if you need to do any fall/spring cleaning the CEGM Jeremy is exactly what you need he can totally clear a cabinet in a minute or less. I woke up from a nap on Saturday afternoon only to walk into his room to find that everything was taken out of the top of his armoire and the canned foods in the kitchen floor were cleared from the cabinet. I don't have any pictures, I thought I was dreaming, a little in shock. I haven't had piles like this since Jeremy broke his leg so it's going to take me a while to get back into the routine of having the CEGM Jeremy back.

Thursday, September 25, 2008

No longer in a cast !!!!

HOORAY !!! Jeremy got his cast off yesterday. Bless his heart his leg was really dirty, sand poured out of the cast and somehow he managed to get a stick under his heel. He kept rubbing and scratching his leg but really glad to have it off. They told me it would take several days for him to start walking on his leg. He's been walking on his leg some. This is a video of Jeremy sitting on his bed with no cast playing "Pop Up Baseball" he was having so much fun with it.

Tuesday, September 23, 2008

OH What a Look !!!!!

What do you think this is about? I think it was time to come in and he wasn't ready or he did something he shouldn't and got caught, but either way he was having a good time.

Tomorrow we go see Dr. Holt in hopes of getting the cast removed, please pray for the healing of his leg and the removal of the cast. I am ready, it's tough carrying him around and yes I'm ready for my boy to be mobile again. I know Jeremy is ready.

Thursday, September 18, 2008

Jeremy in the news !!!!

We did an awareness story with Nicole Wiseman from KOTV, Channel 6. It was done so parents who have special needs children can learn about OFN and know that they are not alone. There are other families that want to help and have dealt with exactly what they are. For me as the Regional Coordinator what can I say, I LOVE the work I do with Oklahoma family network, GOD gave me a passion for families who have children with special needs. I love to visit with the families, learn about their children. I love being the hand that helps them across that bridge.

Here is the link if you didn't get to see it, you will probably have to copy it into your web browser.


Tuesday, September 16, 2008

He's mobile again and Chef boy O Jeremy !!!!!

Jeremy has cautiously walked around objects for a few weeks, but yesterday he got his confidence back. When I got him off the school bus they told me that he turned loose and started walking everywhere. I was surprised but when we get into the house, I sit him on the floor and he takes off like a race horse. It is a welcome site but it's funny to see him toddling around again. It's been almost 7 weeks since he has walked at all. We go back on September 24 and hope that he gets the cast removed completely.

I told Jeremy he could help me cook yesterday which he loves being in the kitchen when I'm there but it's more so he can put things in the microwave and it is not always food. I figure if I could start him early this will add to his ability when he is older to be independent. I was fixing okra yesterday evening for supper, it was cut up and in the frying pan. I buy Jeremy toddler puffs, they are soft, I don't have to worry about him getting choked and they have additional calcium. Jeremy decided that he wanted his banana puffs with his drinkable yogurt as a snack. He was happily drinking his yogurt and munching on banana puffs as I stepped into the other room for a minute (Jeremy can do lot of damage in just one minute). I come back to stir the okra only to find that Chef boy O Jeremy had created his own recipe called banana puff okra because he had poured the rest of the container in with the okra. Try picking soft puffs out of okra that is frying.

Wednesday, September 10, 2008

Sib shops and Extraordinary Connections !!!!!!!

I'm posting this on Jeremy's blog because it does pertain to him, he's been my inspiration for the past 9 years on the reason I am involved in the Oklahoma Family Network and other projects I've been involved in.

Extraordinary Connections- Genetics have always interested me, we searched for many years to find out Jeremy has FG syndrome, then a "significant" change on his L1cam gene to find out I've got the same change on my L1cam gene. When I visit the Children's hospital I always ask them for any family that has been admitted that has a genetic syndrome, unknown genetic syndrome or anything metabolic. I love speaking to the families, I have learned of many syndromes that I had never heard of and I always will research them to find out information. We have so much in common even though we have different diagnoses. I called our Executive director and told her I have a passion to start a support group. I visited with another mother who was excited, we met for breakfast one Saturday morning and brainstormed. By Monday Extraordinary Connections was born with a logo that Melissa and David Ramirez came up with. Extraordinary Connections is for families of children with rare Genetic or Metabolic disorders. Extraordinary connections meetings are a safe environment for the parents of children with rare genetic or metabolic disorders to find support, resources and truly empathetic companionship. For purposes of this group, we defined "rare" as impacting five or fewer children with the state of Oklahoma or families without a diagnose for their child's condition. My purpose will be that this group will be to help the families find similar experiences. Our first meeting is,Saturday, September 20, Hardesty Regional Library, Maple room, from 10am to noon.

Sib shops- talking to families or visiting them in the hospital they would voice how hard it is for their other children who doesn't have special needs. Often times these children feel left out. If their sibling with special medical needs they are so demanding and require many appointments, hospitalizations. If their sibling has developmental or behavior, they are demanding and require therapy appointments or often times when they are in public the child will be embarrassed by their sibling's action or while they are at school they gets lots of questions about their siblings special needs. Jeremy has no siblings but I am totally emphatic with families who has a child with special needs and other children. Sib shops is a fun place where school age children who have siblings with special needs can interact with other children their age who have siblings with special needs, and get the emotional support and build relationships with their peers. I am going to be the coordinator of the project and worked with Juanita from Oklahoma City who has had successful sib shops for the past several years. Juanita did a planning meeting with me and 2 women who grew up with a sibling who had special needs and child life specialist from St. Francis Children's Hospital. We are going to have them at St. Francis Education Center, Classroom #2, starting October 4 for the 6-9 age group, Nov 1 is the 10-12 age group and they rotate each month and will go for 4 sessions. I'm also working on attending a 2 day Sib shop workshop in Salt Lake City, UT for November 13 and 14, so I can be better equipped to coordinate and make sure our Tulsa sib shop is a success.

Monday, September 8, 2008

Jeremy's version of playing Perfection

I don't know how many remember or played the game perfection but it is actually one of my favorite. The goal of the game is to get all the shapes in their place before the timer goes off and it pops up the board and you loose everything. I had bought the game for Jeremy many years ago (ok I probably bought it for myself). I knew Jeremy would get a kick out of it especially when the timer ran out and the board pops up. I also thought this would be educational so I attempted to teach him how to play. The below video is Jeremy's way of how you play perfection, no explanations will be needed. (the video is sorta dark, I didn't have the light on in our living room so I hope that you can view it)

Friday, September 5, 2008

We are on the mend....

Yesterday we went in for a 4 week check on J's broken leg and the leg is healing very well. We were able to get rid of the full leg cast and Jeremy is now in a walking cast. I really expected when they cut the cast off that it would stand up and walk away by itself and was surprised to find that Jeremy's leg wasn't all that dirty. Everyone couldn't believe that he had worn a hole in the knee and was working on one in the heel of the cast. We go back in 3 weeks and Dr. Holt gave me the impression that at that time there is a good chance that Jeremy will get rid of the cast. Dr. Holt's medical assistant put on Jeremy's walking cast, he was funny and had Jeremy laughing. Jeremy was exhausted when we got home and took a really long nap.
School is going good and on Monday Jeremy will start going to his typical 3rd grade classroom, they will assign him a buddy.

Monday, September 1, 2008

The lazy days of summer are gone...

I can't believe summer is almost gone, don't get me wrong I am so glad. Fall and spring are my favorite seasons. This past weekend was my mom's reunion and we've had one for the past 19 years. I was going to take Jeremy down and let him experience a night of camping in a tent but that was before broken leg. Here is a picture of Jeremy trying to help his Uncle James cook.
Jeremy has done a bang up job of destroying his cast and "officially" wore a hole in the knee. He finally started on Friday walking on it so we should be close to a mend. We went in Friday to see Dr. Cyrus to do a check on our ADHD medicine and Jeremy actually gained a few ounces and grew a little bit since last year. Here is a picture of Jeremy with Dr. Cyrus. Jeremy really does well in his office, Dr. Cyrus is so much fun, plays with Jeremy. Jeremy never likes to have his ears looked at but this visit Dr. Cyrus tried to clean some wax out and Jeremy was pretty mad.

Monday, August 25, 2008

The creativity of Jeremy....

I have this glass vase that came with flowers and some light blue rocks so when the flowers died I washed it out and sit it on my kitchen window and when the sun shines in it sparkles. My mom informed me that it would be a good home and thinks Jeremy should have a fish. I came back into the kitchen after putting up Jeremy's clothes and remember he is still in a cast and he was sitting on the kitchen cabinet drinking the water out of that vase. This is how I envision that little fish's life at our house. What if there had been a fish in that vase? Some say he would have ate it, but Jeremy has to put everything up to his nose and smell it before he eats it. That poor little fish would get stuffed somewhere and I would find it days or maybe weeks later. Now why would Jeremy's mom think that of such a sweet, little adorable boy? Jeremy is a typical little ornery boy who has a certain creativity about him and for some reason beyond me has this need to stuff things in places. When Jeremy first became mobile I would get up in the morning put something in the microwave and out of the corner of my eye see something green and blue going around in circles, open the door only to find he had put one of his creatures in there. Then there was the time I had given Jeremy a banana but noticed a banana was missing so I searched for his favorite stuffing places, was sure he hadn't ate it because he couldn't have peeled it. I get up the next morning take out the toaster and put his toaster scramblers in and the toaster starts smoking. Have you ever toasted a banana in the peeling? Well it doesn't smell good and the toaster didn't survive. Friday I get home and start sorting my laundry into piles before Jeremy gets home. I am going through the pile and notice in the laundry basket there are two hands and two paws sticking out underneath a pile of clothes, I look down only to uncover Jeremy's monkey. Although these things can be messy, they always make me chuckle and wonder where he gets the idea or why he does that.

Here is a video of Jeremy taken yesterday evening and a conversation that occurred between us. Again remember Jeremy is in a cast and not suppose to get wet and he's mostly non-verbal but check out his gestures and his face as he first notices that he got caught. I might also add, I went inside to get my camera to take a picture of him on his little tyke bike on the other side of the yard and came outside and couldn't find him, he got on the back patio all by himself.

Friday, August 22, 2008

A Mother's Angel

We celebrate several anniversary's in Jeremy's life, one of which happened 8 years ago today. This is the day Jeremy's heart was repaired and he was given not only the chance he needed to thrive but survive. Jeremy was in congestive heart failure and failure to thrive. If you have read the previous post you know how terrifying that day was but also the excitement we experienced. It all started in an office visit to Dr. Cyrus telling me we need to address his heart and he was calling our cardiologist to get this started. This sent me into a whirlwind of emotions. I had to leave town that day for work so I dropped Jeremy off with my sister and headed to Ft. Smith. I hated the fact of leaving Jeremy but it gave me some major alone time with GOD and for me to realize we were heading for open heart surgery. I was hopeful up until that point we wouldn't need surgery. I sit in my motel room and shed many tears for the unknown, below is a poem I wrote that night for Jeremy, I'm am expressive person and can write a book in 1 hour if I needed to, this was my feelings of how I felt about Jeremy being in my life and what his presence meant to me. I hung this up by his bed when he was critical in PICU. One day when Jeremy was 2 months old leaving yet another frustrating appointment with our cardiologist, I was in tears, overly emotional and cried out to GOD to help me understand. I heard, "Lora I am going to heal Jeremy's heart" and I literally had to look around to see who was talking to me, I realized that it was GOD. I knew GOD was going to heal Jeremy but once again my opinion of it and GOD's opinion are normally two different things.

A Mother’s Angel

On Aug 9, 1999 an angel came to earth
He came through the way of a miraculous birth

This angel had blonde curly hair and beautiful blue eyes
Instantly his mom fell in love with him and started to cry

He had some problems so intensive care he would stay
He was the best baby there for calm was his way

In the 1st year of life all the tests he would go through
But this angel never complained a trooper so true

God answered the prayers of the people who would pray
God has a special plan and will use him in a wonderful way

He has used him to bring glory and honor to his name
The lives that he touch will never be the same

No matter what he battles and all of the strife
He is the very love of his mother’s life

The angel is a fresh breath of air, a ray of sunshine
He is just a little doll and never does whine

He just has this charisma that draws people to him
When you are around him the world is not dim

He has the cutest smile for anyone around
To hear him laugh and talk is a beautiful sound

So heaven lost an angel on that very special day
But it was to earth’s gain named- Jeremy Ray

Wrote for my little angel boy - Jeremy Ray
From: your mom whom will always love you…. (June 12, 2000)

Champion Child !!!!

Jeremy didn't win Champion child of Oklahoma, I was disappointed. They did such a great job on the video. I know it doesn't matter if he won or not, he will always and forever be my hero.

Below is a link that they played during the radio-thon w/ Rich Lenz from Channel 6, there are several clips of Jeremy playing on the playground and in one of the rooms.

Wednesday, August 20, 2008

1st day of.....

Today was Jeremy's 1st day of 3rd grade and I can say he wasn't thrilled that he had to get up this morning. This is the first summer that Jeremy has really got to stay home and not required to get up and go to daycare or Kid's hideout and it was nice for everyone. I was able to have enough HTS hours that Sammie could come in and watch him. I would take Jeremy to Extended school year services for 4 hours a day, then he returned home for the remainder of the day.
What is so amazing to me is exactly 9 years ago Jeremy graduated the EOPC (Eastern Oklahoma Perinal Center) @ St. Francis. We had been there since birth for 11 days and he came home weighing exactly what he did at birth, 5 pds and 3 oz. I was happy to be going home but I was afraid, them 11 days were not a picnic, that is where we found out that Jeremy was not going to be a typical child. We were given a list of physicians to follow up with and signs that we needed to watch Jeremy for. When we put him in our car, I cried to myself with fear because I was not qualified to be this child's mom. I couldn't take care of him. We were approved for 3 days of home health nurse visit and that was my sanity. It was a comfort for her to come the next day and confirm I was doing what needed to be done for Jeremy (although I didn't sleep any that night because I stayed up all night watching him). I started to feel better as the days went on and gained confidence in my mother skills and realized that not only could I be Jeremy's mother but I was the BEST mother for Jeremy. I wasn't picked from a mother tree and I don't believe that GOD gives special needs children to special moms. GOD did pick me to be a mom and GOD has a special plan for Jeremy's life regardless of his needs. I've had a vision for many years of Jeremy standing up in front of people and his words are, "this is what they told my mom would happen but this is what GOD did". I am a mom who has a child with special needs and would literally fight a bear if it stood in my way of getting Jeremy what he needs. GOD gives us our children and that is our job, to teach them about him, so they can return to him.

Monday, August 18, 2008

A child shall lead them......

Today after we visited with Dr. Michael Kayser our Geneticist to discuss the L1cam gene "significant" change that was noted, I took Jeremy back to Happy Hands a Christian Developmental school for hearing impaired/deaf children. When we pulled up into the circle drive like we did a million times, I asked Jeremy do you remember Happy Hands and he says, "ahhh yea" and reached for his backpack. It was good to see our past friends, although the children Jeremy went to school with have since moved on, we were able to visit with our one of our past teachers, and Jan the director and Al the founder. Our story of why Jeremy went to happy hands started when he failed his newborn hearing screening, we were advised to get it re-checked so at 6 weeks we repeated the newborn ABR only to find Jeremy had a moderate/severe hearing loss. We had him fitted for hearing aids and was told about Happy Hands, course my thought was I live in Sapulpa and there is no way I'm driving to Tulsa every day. I already had daycare in place. Not only does GOD work in mysterious ways but he also has ways of changing my mind. Amazing, my daycare plans were disrupted when the lady's husband got transferred out of town. I'm sitting at my kitchen table wondering what I am going to do and crying out to GOD with all we had been through so far I didn't need this. This was going to offer me some normalcy into my life. There on the table was a Happy Hands brochure. I read it and a comment from one mom was how it was an answered prayer so I decided we would visit. Jeremy had just recently been discharged from the hospital after a sudden return and I was overwhelmed with all of the new information and what it meant for us. The school was impressive with the children being so happy, when we got ready to leave, Jan the Director asked if she could pray for us because that is what they do at Happy hands and I knew that GOD was telling me this is where Jeremy needed to be. Jeremy attended Happy hands for 5 years and the summer before he started Kindergarten I made the pain staking decision to remove him and enroll him in Sapulpa full-time. When Jeremy started his other daycare that summer he would fold his hands when they started to eat he was so accustomed to praying before each meal because that is what they did at Happy hands, they prayed plus they had a morning prayer time and Jeremy was the thought of many of their prayers. We found out the next summer that Jeremy did not have a hearing loss, it was the way he was processing information so he no longer needed hearing aids. The developmental phase of the hearing aids and being at Happy hands gave Jeremy one of the start he needed. Although, Jeremy is non-verbal his receptive language is good. You can ask him a question and he will sign "please" and that is his way to say, "yes that is what I want". He is also getting verbal as you could tell by his little video, he jabbers up a storm but is really good at saying, "no" and "ahh yea".

We also went to meet Jeremy's new teacher at Jefferson-Heights, Mrs. Parsons and a familiar para-professional, Misty Glen. We ran into our principal Mr. Walsh and Mrs. Wit who all had to come over and talk to Jeremy about his broken leg. Jeremy starts school on Wednesday, August 20 and he will be in the 3rd grade. I'm excited for a new year, for new progress he is going to make, new skills.

Thursday, August 14, 2008

You can't keep a good child down !!!!!!

On Saturday, August 2 we went to my OG&E lineman's expo in OKC like we have done for the last 7 years. I took my 3 nephews to help with Jeremy while I worked the concession stand. Jeremy went down the inflatable slide which he loves, so the 2nd time I went down behind him. When he went down his leg rolled underneath him and he landed on his leg funny, it was twisted and didn't look right. I decided to bring him back to Tulsa so he could be seen by physicians and facilities that are familiar with us. They X-rayed his leg and sure enough he broke a bone, so they put him in a splint gave him Tylenol w/ codeine and we had to follow up with our Orthopedic surgeon. We went to see Dr. Holt on Tuesday and he put him in a full leg cast and said he would be in it for at least 6 weeks possibly 12 weeks depending on how fast he heals. Jeremy has lower bone density than other children do. His leg was really sore for the longest time and he wouldn't walk or do anything. I first thought another set back but then I started to realize this boy doesn't lack determination and when he felt like he could crawl or walk he would do it, and sure enough on Friday he started to crawl around, here is a video of Jeremy that was taken yesterday.

Friday, August 8, 2008

The Champion Jeremy is....

I'm going to attempt to type up Jeremy birth and his entire past history:

Monday August 9, 1999- I wake up early morning with some light contractions, Dr. Lunn my OB/gyn already scheduled me to enter St. Francis Hospital at 41 1/2 weeks pregnant to have my labor induced. I take one last look in the baby's room to make sure everything is ready and tell the baby this is it, I am going to finally get to meet you today. I was so excited to finally be a mommy. Dr. Lunn comes in breaks my water and almost instantly the baby's heart rate starts to drop, they give me oxygen and put me on my side but it doesn't help. Dr. Lunn decided we need to do an emergency C-section because the baby or I am not going to tolerate labor and that scared me. I am being wheeled down to an OR around 8:30am to get prepared to have a C-section. At 9am, Jeremy Ray is born weighing 5'3 and 17 and 1/2 inches long, he looked perfect to me and I was thrilled to have a little boy. They had the special care team to check him out, his apgar scores were 9 and 9 so Jeremy came with us to our room. Dr. Scott Cyrus, Jeremy's Peditrician, who I interviewed and picked out when I was 8 months pregnant came in to the room at 12:30pm, it was a welcome person because he was familar to us but the words he spoke were not what I wanted to hear. Dr. Cyrus told us Jeremy looked great, but he suspected he had hydrocephalus and would do a test to confrim the diagnoses and honestly it didn't matter what he just told me because all I heard was there was something wrong with Jeremy. That evening we meet Dr. Karl Deitweiller, Jeremy's NSG who confirmed that Jeremy has hydrocpehalus and needed a shunt placed or it would result in severe brain damage or death. What choice did we have. Jeremy was admitted to EOPC, St. Francis Eastern Oklahoma Perinatal Center and you know if your baby is admitted they are sick. I was allowed to go down and see Jeremy, the walk from your room to the EOPC is the longest, lonliest walk you will have to take, you have all these thoughts running through your head and you don't know what to expect. I just had to realize that my baby who was suppose to come home with me on Wednesday is going to have brain surgery the next day.

Tuesday, August 10, 99- 2pm Jeremy has surgery to place the VP shunt and did great with the procedure, Dr. Deitweiller was impressed.

Friday, Aug 13, 99, follow up CT scan to make sure the shunt was working and doing what it should, but a brain abnormailtiy was discovered so they ordered an MRI.

Saturday, Aug 14, 99- the MRI showed that Jeremy was missing part of his brain or that is all I could understand at this time in my life, he has Agensis of the corpus callosum which we were told he could be deaf, blind, mental retardation, probably will never walk or talk. We did a bone growth study to make sure Jeremy was his birth age, that looked great. We met Dr. Stephen Groves for the first time, he checked out Jeremy's optic nerves which looked great. The chromosone test came back showing that Jeremy had normal XY kayotype for a male child. We remain in the unit because Jeremy is having trouble eating. If Jeremy doesn't start eating the other option would be a feeding tube.

Monday, Aug 16, 99- we entered the unit and our physican tells us that they heard a heart murmur so Jeremy needed an echocardigram to find out what is going on with the heart. 10pm, I meet a pediatric cardiologist who gave me the most devasting news since Jeremy was born. Jeremy was born with a "severe" heart defect, a small ASD, overiding aorta, mitral valve stenosis and a very large VSD. We were told to expect to have a sick baby in and out of the hospital and hopefully he can wait until he is a year old to have surgery. I cried all the way home and couldn't speak to anyone this was the worse day of my entire life.

Friday, Aug 20, 99- Jeremy started doing amazily well, he started eating and did gain back some of his weight so we were officially discharged from EOPC. We were given a list of physicans to see, symptons to watch for and to be honest I was really scared to take him home and didn't feel qualified to be his mother.

September 10, 99, our cardiologist put Jeremy on Lasix the day before so we had to follow up with Dr. Cyrus to check Jeremy's electrolytes. Dr. Cyrus re-admitted Jeremy to St. Francis Children's Hospital for the first time, I just didn't realize it wasn't going to be the last. We did IV fluids all weekend to regain his potassium and sodium. I cried all the way to the hospital with Jeremy and was going to fire Dr. Cyrus. This visited prompted some metabollic testing and an appointment with Dr. Coldwell metabollic physican but all testing came back negative.

February 2000- Jeremy wasn't feeling good, and by Saturday evening I felt uncomfortable with him being at home so we went for the first time to the St. Francis Children's Urgent care clinic. We were almost admitted for Pnemonia but after the cardiologist checked out Jeremy they felt his heart was stable. We were sent home with some antibotic, breathing treatments and to follow up with Dr. Cyrus on Monday. We started the treatment and was settling in for the night when around midnight the phone rang at home and it was our peditrician Dr. Cyrus in a panic wondering where Jeremy was he had called the hospital because the physican assured him we were going to be admitted. That made me realize how much he really cared for the well being of Jeremy and from that moment on he was my liason and our special doctor.

June of 2000- after Jeremy battled a stomach virus we seen Dr. Cyrus, he was loosing weight. We were required to come in for weekly weight checks. Dr. Cyrus made sure we were getting enough calories but more importantly put a call into our cardiologist that we needed to address fixing the heart. His heart was taking too many of his calories and he was diagnosed as failure to thrive. This prompted more metabollic testing only to have them come back negative as well and the thought of we are heading for heart surgery.

July 23, 00 we entered St. Francis Pediatric Intesive Care unit to be prepped and prepared for our heart cartherization with Dr. Cooper and Dr. Mathew Kimberling, Jeremy did great through the procedure and came back to PICU. We were admitted overnight because Jeremy couldn't maintain a good oxygen level and they felt uncomfortable sending us home. Dr. Kleiwer told us that we may have to stay until his heart was fixed, I was really scared Jeremy didn't do very well but amazing through the night he thrived and we were released the next morning. Jeremy's mitral valve was so severe that they really had no idea what to expect in the upper chamber of the heart.

August 15, 00- we met Dr. Richard Ranne the most dreaded appointment of my life he is the Pedaitric Cardivascular surgeon and you see him because you need heart surgery. He assured me he wanted to repair the mitral valve but really didn't know what he would have until he got in there. Jeremy was failure to thrive and congestive heart failure and not even a year old. He said the surgery could take up to 8 hours and we could be in the hospital for 14 days and then he has to discuss fataility rates with you. Major open heart surgery was scheduled for August 23, 00 and I cried all the way home. I started researching the internet for open heart surgery and it really scared me. I had to place my son in the hands of GOD his creator along with my faith.

August 23, 00- we entered St. Francis in-patient surgery to be prepared for open heart surgery, I was well aware they were going to open up my son and stop his heart so Dr. Ranne could work on his heart and they did this by putting Jeremy on the heart-lung bypass machine, I was scared cause Jeremy was so fragile and some children are not able to come off of the machine. This was a very traumatic time for me, my in-laws, my parents, my sister and brother in law where all there to help support us. I turn my 14 pd infant over to these nurses and started to cry, I was so afraid I would never see Jeremy alive again and I had wanted a baby so bad for over 8 years. I prayed to GOD, please let him survive, protect him but if it's your will to take him home with you, the strength will come from you because I can't deal with this but please GOD don't let him die. Dr. David Hall was going to place tubes in Jeremy's ears before surgery so we could get this done at one time. Dr. Hall came out quickly and informed us that Jeremy was doing really good, the tubes went in easy and after he recovered from heart surgery follow up with him on the tubes. I would dread the phone ringing each time as they would update us of what was going on, although I appreciated knowing it was the fear of each ring being told my baby didn't survive, with each call it was Dr. Ranne sewing the patch on the very large VSD, basically Jeremy had no wall. Then 10:30 the call came through that Dr. Ranne was finished, closing up Jeremy he came off the heart lung-bypass machine very easy. I quizzed about the mitral valve that was going to be our biggest issue and no one mentioned it, they said, "oh no big deal he was born with a fiberous ring around the valve, Dr. Ranne did some cutting, cleaned it up and it started working". THERE WAS LOT OF PRASING GOD IN THAT WAITING ROOM. Jeremy was headed to PICU and we were to go up to the waiting room and wait on Ranne to stablilzie Jeremy. We were then allowed to see him. Jeremy was in an induced comma so he wouldn't move, or be tempted to pull out the chest tube, vent or pacemaker. It was really hard to see him that way and not hold him. Dr. Cyrus had prepared me it would be hard not to hold him. The thing that really broke my heart is when he woke up and started to cry I couldn't hear him cry due to the vent he was on, I had to get as close as I could to his face so he would feel that comfort and me feel his comfort.

August 23, 00, Jeremy came off the vent easily and they removed the pacemaker, which he never did need.

Aug 26, we were transfered to the children's floor where we would stay until going home.

Aug 28- after the surgery only taking 4 hours and 6 days after having major open heart surgery, Jeremy was discharged to go home, his heart was doing great. We followed up later that week with Dr. Cyrus, he weighed him took out his stithes, we seen Dr. Ranne the next Tuesday and he released us from his care.

Sept 00- A phone call from Dr. Cyrus about 4:30pm sent us back to St. Francis Children's Hospital, where Jeremy was re-admiited due to his white blood count being extremely high and he was afraid he had an infection in his heart. We did an echo the heart looked great, the shunt was tapped to rule out shunt infection. We stayed for a week, Jeremy responded to treatment and we were released, unknown infection.

April 02- A follow up MRI prompted a call from Dr. Cyrus to tell me Jeremy's ventricles were enlarged need to see our NSG and I knew that meant a new shunt, Jeremy's shunt was 2 1/2 years old and I was awful fond of the shunt we had.

April 15, 02- Jeremy was admited to St. Francis Children's Hospital to have a shunt revision and we were discharged the next day.

April 21- I took Jeremy to St. Francis ER he was not doing right and something was wrong, the CT showed ventricles were not enlarged, the shunt was not tapped due to him not running a fever. The weeks to follow were several visits to Dr. Cyrus to rule out various things, we did blood work and he even cultured his blood. May 6 a phone call from school Jeremy running a high fever being lethargic prompted a quick trip to Dr. Cyrus and him calling our NSG to say he is admitting us and he needs to tap the shunt. We would spend 12 days in the hospital battling a shunt infection which means removing the infected shunt, placing an external shunt to where he would receive powerful antibotic vancyomcian until infection was cleared and then getting a new shunt on May 15. Jeremy was noted to have scollosis so we needed to address this. I was overhwhelmed and felt like we had dealt with everything.

Since May 17, 02 Jeremy has not been admitted to the children's hospital overnight. We have had our share of outpatient proceudres, dental surgery, stints placed in eyes, sleep study, CT, MRI, echo and tubes placed in ears. Jeremy can't be sedated so his procedures are done by anesthologist.

We followed with Dr. Burham Say who was our local genetcist and Jeremy was tested for Smith-Lemi-Optiz syndrome, Williams Syndrome, Jacobson syndrome, Pallister-Killiam syndrome and several others but nothing came back with a positive diagnose. Dr. Coldwell followed Jeremy for metabollic but nothing came back with that. When Dr. Say retired we started seeing Dr. Moggandam who tested and considered Jeremy for several syndromes but nothing came back positive. We found FG syndrome and Dr. Moggandam did in fact feel that Jeremy fit the critera but it required a clinical diagnoses as there was no known test. Dr. Cyrus helped us gather 5 years of medical information, school testing and sent to Dr. John Optiz who was one of the founders of FG. March 23, 2005 we took Jeremy to see Dr. Optiz at the Divison of Medical Genetics at the University of Utah Health Sciences Center and Dr. Optiz in fact diagnosed Jeremy with "severe" FG syndrome but found Jeremy to actually be in excellent shape for his condition.

FG syndrome is an X-lined genetic syndrome first described in 1974 by Drs. John M. Optiz and Elizabeth G. Kaveggia as a multiple congential anomaly. While FG syndrome was originally diagnosed as rare since the mid 1990's clinical researchers have debated and studied the likelihood that it is more common that suggested. Some of the common features of the syndrome include poor muscle tone, chronic consitpation, hearing loss, vision problems, genital abnormatilies and respiratory problems. Some children have heart defects, agensis of the corpus callosum and/or imperforate anus. Other features sometimes include kidney probelms, a large head, broad thumbs, and big toes, characterstic fingerprint patterns, webbed fingers and toes, skeletal defects (occasionally craniosynostois and scollosis) and a sacral pit. AKA, Jeremy.

May 15, after videoing the champion child video with Dr. Cyrus a recevied a call from the Greenwood Genetics clinic who was researching FG syndrome and we particpated. They found that Jeremy has a "significant" change on his L1cam gene not reported nor see in any reports, it also showed that I had the same gene change on my L1cam gene so Jeremy inherited this from me. The L1cam gene is located off of the long arm of the X q 2 8 chromosone. Females have two X chromosones and males get the X from their mom. We currently follow with Dr. Michael Kayser at the Center for Genetic testing at St. Francis.

Wow this is quit a history, Jeremy today is a 9 year old happy boy, he wears AFO for leg/feet stability, back brace to stabilize scollosis. Jeremy started walking when he was 4 years old with a walker and when he was 5 1/2 he put down the walker and started to walk on his own. Jeremy attends Sapulpa public schools where he is mostly in the multi-needs class but is mainstreamed in with his typical peers, I continue to fight for more inclusion. Jeremy is mostly non-verbal but does vocalizie and there are days I think he will talk in sentences. When he entered Kindergarden he wouldn't sit nor particpaite in group time but he now will go to group time when requested. Jeremy has taught me over the years there is power in prayers, joy in situations, laughter and strength along with the true meaning of love. We don't get stronger by never enduring hard times it's the hard times that make or break us. When he walks up and puts his arms around me and gives me a kiss time will always stand still. He loves to play with his toys.

I am Jeremy's strongest advocate but our life long peditrician Dr. Scott Cyrus will always have a special place in my heart for what he's done for Jeremy, we love him. I serve as the Northeastern Regional coordinator for the Oklahoma Family Network. OFN is Oklahoma's parent to parent, I match families up with other families in a similar situation and help them find resources. I have been an active member of the St. Franics Family Advisory council for the past 4 years, we recently built a new facility. We advocate for system changes and family centered care. I serve on the Children's Miracle Network radio-thon as the family/physican liason where I recurit families to share their experience and coordiante with physicans. I speak to the new pediatric residents by telling Jeremy's story and speaking of the family point of view in having a child with special needs. I graduated in 2008 as a Oklahoma Partner in Policymaking, which is a course offered through the Oklahoma developmental disabilities council a 9 month leadership course to learn what people with developmental disabilites deal with. I do all of this because of what I endured with Jeremy and wanting to help other families with the resources and knowledge I have learned along the way. I love visiting with new families over the phone or in the hospital and I love being the bridge that connects them to the world. I am working on getting a Sibshop in our community started. I started talking to many families who had rare genetic syndromes or metabollic disorders and I realized how much we have in common, I talked to our Executive Director Joni Bruce and told her this is my vision and passion is to get a support group in our area. I talked to another mom who has a child with a rare genetic syndrome who is helping me with this and we will co-partner the support group.

Thursday, August 7, 2008

Summer Camp

Jeremy completed his two weeks of "Awe" tism camp, it was summer camp at school and he had so much fun. They did work but had some fun and took fun field trips. They went to the splash pad at our park every day, played in a pool which is probably why Jeremy has started to like the pool. One day was a zoo trip, another day a horse riding center but they practiced riding horses at school before going, it's funny because Jeremy did "hippotherapy" horse riding when he was about 9 months old and we did it off and on for several years. They had a pinata at school and he really loved it. Jeremy made some progress but he didn't loose any skills he had inquired.

Jeremy had a GREAT fall down an inflatable slide and ended up breaking his leg, pretty traumatic experience for him and me. Jeremy turns 9 years old on Saturday, August 9, I can't believe it but we are having his birthday party at the splash pad which he will be in a cast but I have a pinata so he will love that. I'll post more on these events next week.

Thursday, July 17, 2008

Lazy Summer Days

Jeremy is having a terrific summer.
He attended 5 weeks of extended school year and a 2 week "awe" tism camp at school.

4th of July Holiday- for the first time in his life we actually enjoyed the holiday, we always have a cook out at my sister's house but we normally don't stay. Jeremy never liked the fireworks and I always had to work the next day, but this year it was on a Friday so we enjoyed the whole day. Good food, lots of fun and several good water volleyball games. To my surprise Jeremy turned into a little fish and I couldn't keep him out of the pool. We stayed and watched the fireworks although Jeremy didn't care he sure enjoyed the freedom of running around the yard and staying up well past midnight. We slept until 11am on Saturday to make up for being worn out.

Last night when I got home from visiting a family in the hospital, Jeremy was in the bathtub by himself, singing, talking and I sit there for the longest time and listened to him, he is so funny. Today his school is taking a trip to the Tulsa Zoo, he woke up growling so I don't know if they talked about animals yesterday or not so we turned it into a game about going to the zoo. I would ask him are you acting like a bear and growling and would growl at him and he would growl back, can't wait to see how his day goes.

Monday, July 21- July 23, starts our yearly radio-thon for St. Francis Children's Hospital. Monday July 21, they will do a TV interview with me about Jeremy on Channel 6 for their morning show about 6:30am, and they will show some pre-recorded footage of Jeremy. I will do a radio interview on Tuesday, July 22 @ 8:10am with Jeremy's pediatrician, Dr. Scott Cyrus. We go back on Friday, July 25 for the Oklahoma PTA association benefiting the Children's Hospital with one of their events, they have an hour of "meet the Media" and want to feature Jeremy. I hope tomorrow that I will have the Champion child video and can put a link on Jeremy's blog so it can be viewed.

I'm still working on getting his past history posted.

Monday, July 7, 2008

Summer of 2008

Jeremy will be going into the 3rd grade and I can't believe he turns 9 years old on August 9. Jeremy has had amazing two years at school, making so much progress. He just finished his Extended school year for the summer and met some of his goals while he maintained others. This year Jeremy started to show me just how much of a big boy he is, if you give him a verbal command he follows through with it. We are ordering him an assistive Tech device to help him with speech, but Sunday after church he came up to me almost studding to get words out, I just knew any minute he would start speaking in sentences. He was selected to be the Champion child for St. Francis Children's Hospital and I got to see the first preview of the tape, I can't wait for it to be released it truly showed the miracle that Jeremy is and how much GOD has worked in this little boy's life. This is a picture of Jeremy on Father's day, who was enjoying some sun chips with his cousin Miranda, this was after an exhausting game of kick ball which he went out and started to initiate some play time. A picture of him using his tech talk.

Wednesday, May 28, 2008

Jeremy's new blog

I have wanted to create a blog about Jeremy's life for a long time, but it's been mostly time restraints. I plan to over the next few weeks go back the past 9 years.