AH.... AH....AH... CHOO...

You are probably thinking by reading the title that this post is going to be about Jeremy being sick but Praise be to GOD just the opposite, Jeremy has been healthy.

Here in Jeremy World this is a new game that Serena came up with during the PT session yesterday. I am beyond Grateful, Thankful for all the therapist God has planted in our lives that work so super hard for Jeremy and their creative way of thinking. Serena started with a ball and would say, “ah ah ah choo” and act like you sneeze the ball. Jeremy has always thought it was funny when you sneeze but throw in his favorite toy and it’s even funnier. I didn’t realize this, until last night we were sitting at the kitchen table. J goes, “ah..ah” and I would ask him what are you wanting, show me? The nurse showed me the game and Jeremy would laugh hysterically. It’s one of those J contagious laughs where you can’t help but to laugh along with him you can’t stop yourself. The bigger you make the sneeze, let the ball hit him in the head the harder he laughs, he had me and the nurse laughing so hard.

Serena got Jeremy to use his walker, he walked from the living room, needed assistance down the step, then walked to the back patio, came back, assistance up the step and into the kitchen which is quite the distance walk for Jeremy who was doing all on his own. He is building muscles, uses his walker when prompted, stands up all over the place, working on transferring with less support and last week did some walking with holding my hands.

Jeremy last week fought off what could have turned into an UTI (Urinary Tract Infection, I have to do this for my friend Kelly who tells me to speak English) with no antibiotics. I contribute to the fact he is drinking more water, we irrigate his bladder daily and that is keeping his bacteria down plus has the same 3 people who cath him. We did the Uro-dynamic study on Friday, Dr. Miller got called away to surgery so we didn’t get to discuss the results but what I could tell from what I was seeing and asking the Technician is basically Jeremy’s bladder is unchanged from April so it’s not working. Dr. Miller or the nurse will call me this week.

Here are a few pictures of the amazing, wonder child……

The Chicken dance.....

 Oh Life in Jeremy world with Jeremy is funny.   I got him a birthday card that plays the chicken dance song and he also has chicken dance Elmo.  Jeremy loves just about anything that will play music and loves it even more if you make a big production out of it.  For many years, I've been singing, acting goofy to Elmo who does the chicken dance and the nurse and I have both been showing Jeremy the chicken dance to his card.  Jeremy sits and watch, he started the other day, clapping, flapping his hands and making a sound like "bawk".  He has this book he loves to have read to him a million times, "The Laughing calf" which there is a chicken that says, bawk, bawk, bawk as he walks by.  Jeremy climbed on the table last night, Mr center of attention and was moving his arms around and making a sound like bawk so the best I could tell this is J's version of the chicken dance..... Here are the pictures, I will try to capture a video...

The little monkey boy always scoots a chair over to the sink, sits down and helps me wash dishes Jeremy style so I was surprised last night when he crawled over, pulled himself to stand and stood there by me doing dishes Jeremy style....

Living the days of fall in Jeremy World

Wow, I must say after a 100 plus days of triple digits temperatures Oklahoma finally cooled down and I have to say I’m loving this cooler weather. It has given Jeremy the opportunity to play outside and he LOVES that.

I got the opportunity last Friday to volunteer for the United Way Day of Caring and I worked at Community Care an agency that provides food and clothing for families in need. I’ve been so absorbed in the lives of families who have children with special needs for the past 12 years because that is my ministry so it was good to switch gears and a reminder there are lot of people out there that need help. I am blessed, GOD has always blessed me with a good job that I can provide for Jeremy and I.

Alright let us get to the topic of this blog, Jeremy who is feeling really good, energetic, oh so ornery and full of himself. I walk into the kitchen after going to his bedroom to put up his clothes and find monkey boy standing in a regular kitchen chair with a cabinet door open, 10 mini-cereal boxes laying all around the floor but not before he tore the top off of each one. I was sleeping Saturday morning only to have Jeremy stick his face next to mine and I could picture his sweet little, sleepy face just waking up so I opened my eyes to look at him and say, “good morning” and he blew raspberries in my face. It was time for me to get up and have a cup of coffee. Sunday morning, Jeremy had to wake me up by crawling around to my side of the bed, stand up, pound on the bed with his hands and say “UP”. J’s newest game, he crawls as fast as he can to the door, pulls himself to stand by the banister, unlocks the dead-bolt, swings open the door and out he goes and sits on the porch. He is so funny and so stinking fast, the time it takes me to walk into his room or mine to put up something I come into the living room to find the door wide open and him sitting on the porch laughing so hard he can’t breathe.

J had PT on Monday and did fantastic, PT had him to make the whole circle through the kitchen and living room with walker with no help. He played kick ball while up in the walker for about 8 minutes. Monday he got to meet our 3 new OU PT students, J was sitting in the floor and these 3 young, pretty girls walk in and there went the crinkle of the nose and smile, he was being Mr. charming. We sit around and talked about Jeremy, he had to take pens, papers, write on a few of them to leave his makr and was trying to steal one of their phones but he did really well when I told him to give it back. He then moved on to the “feet” game, you take off your shoes and he sits on your feet or puts your feet on his head. He had one time that he was pulling one of the girl’s hair that we had to battle that one out. He has been tired this week but has worked very hard.

The result of the Kidney/bladder ultra-sound was good, no reflux in the kidneys and no damage.  We do the Uro-dynamic study next Friday and then follow with Dr. Oren Miller.  I am not anticpating much change if any.  I keep Thanking GOD that we've had no UTI's since the 1st of August....

We are in Middle School !!!!!

Jeremy had a good first week of Middle school and the teacher's report was, he worked very hard, was cooperative, happy and smiling.  I figured he would be exhausted by the end of the day but he hasn't.  He continues to work super-hard, the amazing, wonder child who this morning pulled on my shirt, saying look, holding on to the bathroom sink stands up and balances on one leg.  Tuesday in Dr. Cyrus office he was holding his hands walking through the office and he's doing that more.  The nurse gets Jeremy off the bus, gives him a snack.  I took him to lunch on Tuesday and the children were all saying, "hi Jeremy".  I think it was a tough transition on me, J doesn't miss a beat he is so social. 

The sounds of fall to me include, cooler temperatures, Jeremy starting back to school, united way fundraising, Kiwanis pancake breakfast, chili cook-off, Creek County Fair, trips to the pumpkin patch and corn maize. OK I totally realize them are strange but I am OCD, I like plans, I’m a creature of habit and love traditions.  In my family, we grew up with traditions.  It was 2 years ago, this time of the year words spoken to me in a routine check of Jeremy’s spine would send my life spiraling straight into chaos and uncertainty, but God would use this to draw me to a closer more in dept understanding of him than I ever dreamed was possible or I would ever know. “Faith is the substance of things hoped for, the evidence of things not seen.” Hebrews 11:1.

I reflect back to that time when my prayer was earnestly God just heal Jeremy’s spine, you are mighty to save, can move mountains so I believe beyond a shadow of a doubt that he could reach down at anytime and straighten Jeremy’s spine, but if this isn’t your will then help me find the person and place. It was quickly that my mission of seek and find began and was obvious it wasn’t going to be close to home. My thoughts were changed to wherever, whatever, J is my first priority and I will seek with a passion until God closes the door. It was a cool fall Monday morning that I would load Jeremy into the car, drive to Tulsa to catch the van to Shreveport to the Shiner’s Hospital in what I was for sure would provide answers, yet I came back home disappointed and frustrated in what to me was a waste of 2 days.  A cool Sunday after church, leisure drive with my mom and Jeremy in our new car to St. Louis, Missouri to meet what I thought would be the one, I was running out of surgeons. I thought this trip would prove to find the person, facility and answer but yet left that visit even more frustrated and crying out to GOD, is this it? Is he the one? I just have to trust?  My drive made me continue to keep pushing as I couldn’t accept or rest in what this surgeon’s thoughts were, I felt uncomfortable and that Jeremy was a research project to him. Then a drive to Columbia, Missouri to a place I didn’t know existed to a surgeon who couldn’t even pronounce his name was scary. I was afraid it would be like the ones before, he wouldn’t want to treat Jeremy or I wouldn’t feel comfortable with him treating Jeremy. It didn’t take me long after meeting Dr. Dan to find a compassionate, caring surgeon who did actually see Jeremy as a person and I left the visit with so much peace. The surgeon who I would hand my child over to in August to fix his spine found out J had a sensitive spine, but a surgeon who would pull back and say I’m not going to continue. I was frustrated Jeremy lost mobility but was more scared he would not regain it. We come back in January for what I thought would finally close the chapter of scoliosis in our life only to once again have a sensitive spine act up, lose use of his bladder, 3 units of blood and I would fervently stand praying over my son’s hospital bed afraid for his life.

I think the verse above sums it up, faith is the evidence of things not seen. I can’t see the answer, I can’t see God’s plan or the purpose as to the why things happened the way they did. It’s not always his will or way to reveal and I don’t always have that right to know, that is faith in the things I can’t see and in GOD who is Mighty to save.

What an awesome fall weekend we had, Sunday evening after I got the house clean and we went for a mile walk, J climbed out the door and to the yard he went so we played outside for about an hour, he had so much fun. 

He let go and down the slide he came flying, he was laughing

The ever famous, throw the ball down the slide game while mom chases it

He was telling me, "GO", he is too big for his truck but he didn't care

I end with one of my favorite verses that really sums up the entire world, “I am Alpha and Omega, the beginning and the ending, saith the Lord, which is, and which was, and which is to come, the Almighty.” Revelation 1:8

What has been happening....

Wow, I really let the time get away from me in keeping up with Jeremy's blog.  I am getting 5 new windows installed in the house, Jeremy is at school so it's a good time to sit at my kitchen table with my thoughts and get the blog updated.   

Jeremy had a great 12th birthday, he had lots of visitors and fun.  Here in Oklahoma we have had over 53 plus days of temps exceeding the 100 degree mark, the hottest summer since 1939, I work for the electric company and we hit over 7 different peak days so lets say it has been hot.  I made the decision to have Jeremy's birthday party at his house where it would be nice and cool.  We decided on the transformer theme since it was the newest thing.  We had cake, punch, ice-cream and then a pinata for the kids. I had invited the kids from respite to come over for the fun.  I couldn't decide what to get Jeremy as a present and was going to put money in his savings account but that is not what a kid wants from his mom.  I decided on a Toy Story ball pit, it came with 20 balls which was perfect and I knew he would love it because he loves to throw balls.  I almost bought the bag of 100 balls which would mean that J would have thrown a 100 plastic balls all over my house instead of just the original 20.  He treats the ball pit as a tent, he gets in it and puts toys in it.  He did carry it to bed the night of his birthday so I had to convince him to leave it on the floor. 

We started looking at the fact school was starting here on August 22.  We had a meeting regarding Jeremy's medical issues.  I wasn't comfortable in the school proposal so I held Jeremy out a week to get my thoughts together, get some issues resolved.  I wanted Jeremy to start school, he loves it, his friends, he is so social and progresses.  My first decision was to send him 1/2 days so when he got home the home nurse could cath him, he could rest but then it felt right to send him Tuesday- Thursday all day and he would stay home on Mondays for his day of rest.  Jeremy started middle school as a 6th grader yesterday and went all day so when I got home he was sitting at the kitchen table showing the nurse all his papers and he was so excited.  I went to Wal-mart to buy the supplies he needed.  He had a good first day.  This morning I got to get him ready and put him on the bus, we played ball until the bus came.  I know it will take a few weeks for them to get use to Jeremy and for him to adjust but he does fairly well with change.  He has had a fairly easy, laid back summer.  We have been blessed with amazing home health nurses. 

Medical wise:  We did switch Urologist to Dr. Oren Miller, it was helpful to see him and he was very informative in explaining issues to me.  We will start to irrigate Jeremy's bladder at night and this will help keep his bladder free of bacteria and clean.  He is going to do another urodynamics study and kidney/bladder ultrasound since his first ones was done right after surgery.  We did botox injections which made a huge difference in his upper motor movement, before he was so stiff he had to stand and couldn't move his legs well.  If he was standing and bent his knees he would fall.  It took a few days after the injections to get his comfort level back and he was climbing and now is actually building muscles which is what he needs.  We have started to notice seizure activity so we repeated the EEG and it was conclusive for seizures, Jeremy has the partial seizures where he will just zone out and Dr. Miller our Neurologist says these type normally occur at night.  We monitor him and over the past 3 weeks we've only noticed about 3 so we will keep charting seizure activity.  
   
What new exciting tricks is Master of disaster up to, he is almost a full crawl with actively using his knees and he is fast he can glide across the floor in no time flat.  He pulls to stand constantly, climbing into chairs, turning himself around to sit down, his upper trunk muscles are becoming very strong, he just has a few moments he's lost control.  This past week he decided he would start to take a few steps around furniture so he took a few, which is huge.  He's building muscles and confidence and just continues to amaze everyone and be a miracle.  Jeremy has been so healthy this summer, and knock on wood his last UTI was the first of August.

Here are a few pics of his birthday fun:

Happy 12th Birthday to Jeremy.....

I will forever remember Monday, August 9, 1999, after waiting 8 years, being 41 1/2 weeks pregnant my amazing OB/GYN, Dr. Lunn decided I needed to be admitted and labor induced.  I admit it scared me to have labor induced but this baby wasn't coming on it's own and this was a GOD thing, his plan.  I was woken up early that morning with contractions but it was time to get ready which for me included taking a shower, fixing my hair and putting on makeup.  I had spent the day before totally cleaning the entire house so I was ready and excited.  I took one last view of the baby's room and placed my hand on my tummy and said, "OK baby this is the day, this is it, the moment I've waited so long for and at last after 9 months to see you face to face"  I had dreamed of what it would be like to look into my baby's eyes for the first time.  I didn't know if I would be bringing home a Kayla Dawn or a Jeremy Ray.  We arrived promptly at 7am and was excited to be hooked up to the monitors and see the baby in birth position.  Dr. Lunn came in at 8am to break my water, talked for a bit about the day and said she would be back.  The nurse came in shortly thereafter, put me on my side, gave my oxygen to see if it would raise the baby's heart rate and left.  I honestly didn't think anything about it because they told us in birthing class that could happen.  The next vision was the nurse come back in with a guy in a mask and say, "Dr. Lunn doesn't like what she is seeing and wants to do an emergency C-section" now that scared me.  Dr. Lunn came in to explain that the baby was in fetal distress and needs to be delivered.  I calmed down.  It was amazing at exactly 9am, I could hear my baby cry for the first time and was told we had a baby boy and after they checked out Jeremy I got to see him face to face, glance into his eyes and wonder what is he thinking.  It was God's plan, he knew J was going to be born on August 9 and with hydrocephalus, so me being induced allowed us both to be monitored instead of me being home and going into labor so the first sign of distress we were off for a C-section.  Jeremy didn't have a traumatic birth experience.  I can't imagine my life without Jeremy and can truly understand the dept of a mom's love for her son.  Happy Birthday to my amazing son, Jeremy Ray and I am grateful beyond words that God sent you to my life.  You have inspired me, taught me more than I could have ever learned on my own....

Last year....

I was putting my precious boy to bed Saturday night, he was exhausted from the weekend fun we had at the OGE lineman's expo.  His little precious face and it made me think of where we were at this time last year.  My life was rocked and I was living one of worse nightmares 358 miles away from home in Columbia, Missouri at the University of Missouri Children's Hospital.  Jeremy had survived the anteior release surgery but we were running an MRI to check for a spinal cord injury and he couldn't maintain his blood pressure so it was a trick to get him to the MRI machine, plus to sedate him.  They didn't know why J wasn't moving his lower extermities but it was a concern at that point.  I was getting Jeremy ready for church on Sunday morning and thought, man I really hate scoliosis and what it has taken from Jeremy and how it's changed our lives.  When we got to church they had announcements and J's birthday was in the bulletin.  The preacher asked us what we were thankful for, some mentioned but in my mind I was thinking, J and he's turning 12 this year and much as I hate scoliosis, what about all the doctors who have dedicated their lives to finding and treating scoliosis.  Our Dr. Dan came to my mind, who after already leaving, when Dr. Robertson called him he came back up to the hospital, cleared the hallway for Jeremy, stayed with Jeremy while the MRI was going on, and talked with me on the results and offered to take my mom to the motel room.  I seen this doctor with great concern over the next 12 days try to figure out why this happened, what it meant and how do we treat it next. 

This was our OGE lineman's expo weekend since we missed last year for the 1st time in 9 years I was so super excited that we got to go.  I got to say this was the best year for Jeremy, he had so much fun and really enjoyed it.  My best friend, Kelly and I always volunteer to work.  This year we thought we were settling for the snow-cones but decided that it rocks and that is what we are going to work in the future.  Due to extreme heat everything was moved up an hour, so we worked from 7am to 9:30am.  My 3 nephews went with us and on the way to Oklahoma City I could hear Jeremy in the back seat laughing.  He had a good time and lots of fun.  We went swimming in the pool.  Jeremy loved the swings and where I was working I had a front row view of him, I could see him pushing his head back, laughing, kicking his feet.  He enjoyed the jupiter jump, went down the slide a few times with my nephew.  He went to the petting zoo, he huged a baby kangaroo, petted a wolf.  Jeremy was so tired by the time we left at 11 he didn't even fight me to put him in his car seat and 30 minutes on the road he was passed out.  He only slept about 30 minutes because I had to stop at Stroud for a break and he woke up.  My sister came and got the boys about 3pm and we were both exhausted.  I found Jeremy about 4pm, sitting on the kitchen floor upright with his head slumped over he was worn out and had fell asleep.  I put him on the couch and he slept til 8pm, got up to eat a bite and then I put him back to bed.  I enjoyed the nice quiet house and my own bed after sleeping in a bed with 1 nephew and Jeremy it was nice to have my bed.  

Here are a few pictures of the fun....

I love this

Home of the "orange" OGE Proud ! 

Yes, J was holding a baby kangaroo

J on the swings (you can see his blonde head) he loved it