Welcome to Holidays and Good-bye 2011 !!!!!!

Our Christmas vacation started on Thursday the 22nd, I left for an eye-appointment, then some shopping with my sister, dinner at Olive Garden and then off to the musical, "Suesical" and it was awesome.  I had the opportunity to meet some of the cast when they came to the Children's Hospital Christmas party, they were a fun group.  One of my sister's former students was in the cast as one of the "who" ...Awesome musical would see again.  

Christmas Eve, I was suppose to be at the Children's Hospital helping put meals on each floor for families and staff.  Jeremy started getting cloudy urine on Friday afternoon, he threw up all over the bed including my phone, we irrigated with the Gentymcian and left it in overnight but by Saturday he was going down hill.  Dr. Cyrus wanted us to be seen so off to the St. Francis Pediatric ER for what I thought would be the day but to my surprise there was no waiting and within an hour we were home.  I dropped off what I thought was a pretty common antibiotic only to go back to find they didn't have it, I was frustrated.  I then found out that there wasn't a pharmacy in Sapulpa that had it, so I called CVS and they didn't have it.  I called the ER doctor and she communicated with Wal-mart pharmacy to get something they had.  I was finally home, gave Jeremy his first dose, got my Christmas food ready, Santa cookies made and the kitchen cleaned.  I put on my PJ's, sit down to relax and snuggle with Jeremy when threw up the entire day all over me.  I felt so bad for him, put him in the bathtub to let him play and that seemed to help him.  Christmas day was pretty much the same, no eating, vomiting but by afternoon he was feeling better with no fever and enjoyed the day.  He even started to play with his new jeep he had gotten for Christmas.  I was grateful he rebounded so fast and think the gentymician flush helped.  I then continued my annual tradition of going shopping to see what new Christmas decorations I could find to add for next year so we got lights and 2 new inflatables.  I then boxed up everything and put away for next decorations.  We enjoyed a nice, relaxing, week with no agenda or schedule.

OK, a recap of 2011 which started like we have in so many years, spending the night at Granny and Papa, playing games, eating, laughing and eating our black eye peas on New Year's day.  We then left behind our lives in Oklahoma on a very bitter cold, beautiful sunny skies, a dusting of snow and headed to our temporary home.  We had such a nice, sunny beautiful drive until we got closer to our destination and hit a snow storm, we arrived to Columbia, Missouri to approximately 4 inches of snow already on the ground.  This was to close the chapter of scoliosis in our life.  Jeremy had surgery to place the halo, be put in traction and Dr. Dan started adding 2 pounds of weight a day.  Jeremy got up to 17 pounds of weights and became known as the Master of Disaster of the 5th floor where he would use the walker and drag the weights around.   If you didn't know Jeremy you would because he carried around a ball and would throw it to anyone who looked in his direction, even the Executive Director, Dr. Fete.  Jeremy gained quit a gathering of some awesome people who love him, I gained new friends and allies.   Dr. Dan brought his children up to introduce to Jeremy, then his wonderful medical assistant, Holly brought her daughters up one day to play with Jeremy.  Then Friday, January 28, we were woke up bright and early by our resident Dr. Nelle who marked Jeremy up for his surgery, this was to get some correction, place rods and fuse Jeremy's spine.  I waited by myself until after 1pm, when the reason I found Dr. Dan, Alethea, brought me lunch and waited with me.  I called down about 2:30pm to check and Candy informed me things were not going good, the monitors had went off, he had lost 3 units of blood and they were closing now.  That still didn't prepare me for the conversation I was to soon be having with Dr. Dan.  It took him forever to get into the consultation room and the look on his face and the 1st words he spoke to me is something I will never forget, "this is not what I wanted for Jeremy".  Dr. Dan had always communicated to me that he wanted Jeremy to be mobile, didn't want to take that away from him so I knew where we were headed.  Dr. Dan explained to me, that he lost signals that never returned, got the screws placed but because Jeremy was loosing blood he had to stop surgery because 3 units which was lot for a little guy.  I was then returned to the PICU to wait on Jeremy which seemed to take forever, I was greeted by Lauren, social worker and Corrine, Child life, who heard surgery had not gone well and they stayed with me til Jeremy returned.  I watched a herd of very caring, compassionate nurses, a Pediatric Anesthesiologist, Dr. Burney stabilize my son.  I then had to leave the room so he could put in a central line to draw blood, and give him the medicine he would require.  I stood over my son's bed in total fear, he couldn't maintain his blood pressure and looked so weak and I was afraid he wasn't going to survive.  Then when he started to recover, my thoughts were what is it going to be like when we get home and how unfair this is.  We got several visits from our favorite resident Dr. D. Robertson who had assisted Dr. Dan with his first spine surgery, I gained the respect of another new resident Dr. Alan Anz.  We came home after 31 days with the thought that Jeremy would require rods and fusion within just a matter of months and also with a Foley Cather because Jeremy was unable to urinate on his own.  We held out hope, prayers that all would regain.  We added a Pediatric Urologist to our staff of doctors and started the process of intermittent straight cathing Jeremy 3 times a day and were introduced to UTI's.  We renewed a relationship with our Pediatric Neurologist with increase of seizures, botox and weak muscles.  Jeremy qualified for home health nurse which is a HUGE blessing.  We returned back to see Dr. Dan and all our friends 4 times to be checked with no surgery date set or put in motion and last visit his spine is doing some fusing on it's own.

Jeremy is amazing, you can't look at him and wonder is there a GOD, because all you can see is GOD in him.  Jeremy is writing his own book, always has, always will.  I even had a vision when Jeremy was younger of him standing before a crowd and saying, "this is what the medical world said I would do, but this is what GOD did".  That unwraps before my eyes daily.  We came home to a boy who couldn't even sit unsupported to a boy who is now sitting, crawls faster than most walk, is standing, will cruise around things, uses a walker on occasion.  Jeremy started Middle School and has became Mr. Personality, eats like a horse, off his ADHD medicine, contagious laugh, just keeps my life full and there is no doubt in my mind Jeremy will walk again.   A boy in the eyes of a world who shouldn't regain but a boy in the imagine of GOD who is doing exactly as GOD plans.    

"Blessings: by Laura Story, if you haven't heard it search the words and the song that became the theme song for my life, because what if the healing comes through tears, what if the trials of this life are blessings in disguise.  I can only say on a Monday Morning drive to work that was the only words I heard from that entire song.  I was coming to a point of acceptance and GOD helped me to realize the healing was coming, it was coming through tears and it was my healing.  I had spent countless nights crying out to GOD, why, why, why.  I reached a milestone and received my 20 year service award with OG&E gained 5 weeks of vacation and 10 years with the Oklahoma Family Network.  We also added another Regional coordinator in my region to take the North part of my area.  I am coordinator our 4th year of Tulsa Sibshops.  I did in August lost my dear Aunt Betty, my mom's sister who I have such fond memories of as a child and her children.

So, to the year 2012, we don't know what you are bringing but HELLO and WELCOME.........

Here are a few pictures....

Me and the grinch

J standing for therapy

J being goofy

J with cousin, Miranda

My new jeep...

Me and Miranda, new year's eve

Mom and J, Happy New years

Yes, he wrote on his face with blue chalk 

My prayer for families who have children with special needs.....

 This time of year you hear all about wishes, what is your Christmas wish but my thoughts are prayers for families who have a child/children with any special needs, whether it be medical or developmental, if this happened before birth, at birth or even years later it doesn’t matter there was something wrong with your child and your world was rocked.  These thoughts were gathered from the families GOD has placed in my life this year, their struggles and I hope I can do justice by putting them in words….

                I pray that no baby was born premature, they wouldn’t need life support, help breathing, surgery within minutes of entering this world just so they could survive. 

                I pray that no child be born with a  metabolic disorder, that their body can process the food they are given and they can just thrive on that.

                I pray that no child be born with an addition, deletion, change or we don’t know to their chromosome.   

                I pray that no child be born with any cephalic disorder, hydrocephalus, anacelphy, microcelpely, lisscepley and that they wouldn’t require surgery for a shunt just so they could survive, that no parent would hear them words your child won’t make it out of the hospital or if they do they won’t have any quality of life.  

                I pray that no child be born with a hole in their spine and require surgery after birth, leaving them without the use of their legs and no bladder control.

                I pray that no child be born with a congenital heart defect requiring emergency surgery shortly after birth, months, or even a year, that their chest not have to be cracked open, their heart stopped put on life support and then their chest be wired shut.

                I pray that no child need surgery for scoliosis, no titanium growing rods, no fusion of the spine. 

                I pray that no child get cancer, go through endless years of chemotherapy, radiation leaving them with scars for life.

                I pray that no child get a brain tumor.

                I pray that no child get seizures so bad that they can’t be stopped and it affects the quality of their life

                I pray that no child require a feeding tube just so they can eat, trach just so they can breathe

                I pray that no parent has to say goodbye to their child because they just couldn’t survive. 

                I pray that every child meets their milestones. 

                I pray that no child get over stimulated and can deal with trips to Wal-mart, family gatherings, church. 

                I pray that no mom, dad, grandma or family has to sit in the waiting room and hear the words from a surgeon, “this isn’t what I wanted for your child” 

                For now we are in this world so I know these things will happen, they have personally happened to me or families I have gotten close to through the years, some just this year.

                My prayer is for the all people and professionals who have touched these families life with such care and compassion, please continue, keep up the good work and know that families appreciate what you do, have done, will do for their child, family unit and their situation.   

                I pray for the professionals who will touch these children’s life, have compassion for that family, treat us differently because we all deal with issues and situations differently but we all want respect, we want our child to be treated like a person because they are a person but we were just given news that we don’t want to hear and wouldn’t wish it upon anyone, we do know our child it’s a 24/7 life for us.  You know it’s ok sometimes to give family the news, simply say, “do you have any questions” and if they don’t it’s ok to stand there in silence and not offer yet another philosophy about the situation, as often times we are processing the information. 

                We have other children at home and trying to juggle a child in the hospital and still provide some type of a normal life to the siblings. 

                Some parents are working 2 jobs because they don’t qualify for assistance to help them and some had to quit a job because no one would care for their child or the child is too sick to leave the home or else because their child has behavior and no one knows how to deal with them they were kicked out of daycare or the school calls every day to come get your child because they don’t know what to do with them.   

                There are single families, grandparents raising grandchildren because someone couldn’t deal with the card they were handed, some can’t physically, some often have a mental condition where they just can’t deal. 

                When we come to an IEP meeting ready to fight with boxing gloves on it’s because we are forced to advocate for our child when it should just be freely given, it’s what our child is entitled to yet it is made out to be something of an earned right or you don’t ask we don’t offer.   

                Home Health nurse we aren’t asking you to do anything other than your job, care for our child as if the child was yours.  

                To the church, please understand that some children can’t sit for long period of time, they have outburst that can’t be controlled these aren’t result of bad parenting, it’s a condition that just can’t be stopped so please tenderly minister to the family and extend the offer to help them.   Don’t judge the ones who can’t come because the child didn’t sleep the night before or if the child was to catch a common cold it could possibly be fatal.  

                To our immediate families please understand that sometimes we can’t make family reunions, every dinner or holidays can be a rough time, maybe our child hasn’t slept, we are exhausted, they are exhausted, maybe if they was to get around someone who had a simple virus, cold that it could result in a hospital stay, possible being put back on oxygen or even IV antibiotics, maybe our child doesn’t understand that everyone stuffs themselves with food but they don’t understand why they can’t.   It’s not that we don’t want to be there, it’s that our life is different than yours. 

                We aren’t bad parents, and we love our children so much that we would fight a polar bear for them, we have home health or HTS staff these people are there to help and assist us, we work full-time jobs and sometimes we are exhausted from working and then caring for our child with special needs, we need a break from always giving them medicine, making them get in their gait stander, gait trainer, putting on a back brace, AFO, fighting with them, transporting back and forth to therapy, lifting them endless days in and out of the tub, fighting with them to brush their teeth, wash their hair, we need an emotional break away and you know it’s nice for us to just get to be mom and dad for a change, play with our child and to just love our child.   

                Lastly, we aren’t super parents and we don’t want to be put on a pedestal like we are, we don’t want sympathy because of these things.  We love our child and want them to also have the best life they can, we want for them, a life full of happiness, health and friends and just love our child, get to know them, they are so full of personality, contagious laugher that can make your day and treat them for the person they are…….. 

                

This the season.....

It's been a busy time.  We had a great Thanksgiving holiday, we slept in that day, then got around and went to spend the day at my sister with her family and my mom and dad.  We slept in the next day as well, then I got around to run some errands and shopping with my sister for a bit.  Then Saturday was my family big dinner with all my brothers and sisters, we had another great dinner, family fun.  We had a truly great, relaxing 4 day weekend.

We got Jeremy's new floor reaction AFO, he is tolerating them well, wears them, is getting use to being in his stander for 45 minutes a day to keep him stretched out he is still stiff as a board but he is using his left leg a bit more he crawls, pulls to stand, cruises so his recovery has been amazing.  Jeremy has been overall healthy with the exception of our new thorn Urinary tract infections.  I can say one good thing is I'm able to detect them earlier by knowing the signs, so we get cultures done earlier and antibiotics started earlier but I hate that he's been on so many and it taking him longer to recovery from them.  We seen Dr. Miller, our urologist to discuss test results, Jeremy's bladder/kidney ultra-sound shows that his organs are healthy which is the long term plan to keep them healthy, the urodynamic study shows that Jeremy's bladder can hold quit a bit before the pressure goes up which is good news.  Jeremy just finished a round of antibiotic for his last UTI so we are doing an irrigation flush of gentymacin every 3 days to hopefully that will be the solution to keeping the bacteria under bay.

Jeremy continues to be Mr. Personality, funny little boy and verbalizes like crazy has started saying, "hey bubba" when he sees the nurse so not sure if he's trying to say Debbie or baby but I love walking in the house and hear him say, "hey mumma".  He is waving bye and saying bye like I said just a funny little boy who cracks me up and makes my life..... 

Here are a few pictures of Jeremy.......

A freaky fall......

It's been a long time between updates. 

We went to the Buddy Walk, J had fun with Aunt Jean and Miranda while I worked.  I set up the Oklahoma Family Network display and had a carnival game.  I had fun doing this and playing with the kids.  Here are a few pictures of the fun.   

Jeremy then had the final visit with his OU PT students.  They were ALL awesome, very eager to learn about Jeremy.  They go back take what they observed, research and come up with a presentation to give to their class.  They will come back to see us in December with a plan.  I always love to see what new and things they come up with some good information on FG syndrome.  Here are a few pictures of the visit, it was a nice fall day so we played outside.  J made several of them go down the slide and then he went down last.  He was such a stinker.  Here are a few pictures of the visit.   

We then left that Thursday for Columbia, Missouri at 6:30am, this trip my sister and niece Miranda went with us.  We stopped in Joplin for breakfast, then to Lebandon for a DQ treat and fill up the car.  We had lot of laughs and fun on the trip.  Miranda kept J pretty entertained but I think they aggravated each other but this was lot of fun for Jeremy.  I pointed out to my sister on Hwy 63 between Jeff City and Columbia that the semi-truck in front of us his back door was swinging open.  I sit my cruise control so we are moving on down the highway, see the truck, pass the truck and good-bye truck.  I didn't realize that Jean felt it was her duty to notify the trucker of the open door so her intention was to sign, "open door" to the trucker when we passed him.  She signed, "open door" but we zoomed on past the truck and she was doing her sign.  My question to her which it literally took me over 30 minutes to ask her because Miranda and I were laughing so hard we couldn't breath and Jean was being so serious.  I have small eyes so when I laugh it literally impairs my vision because my eyes almost shut and it's an effort to keep them open.  I ask her, "you wanted me to pull up next to this trucker, slow down so you could sign open door?"  What makes you think that trucker would understand your sign-language?  We made it to our appointment in plenty of time.  Dr. Dan said J looks great, J did use his walker for him, he is concerned about J's left leg which is stiff but we are scheduled for botox injections and new AFO.  He said the spine progressed a little but I wasn't prepared to hear him say that it looks like his spine may be fusing itself.  We continue along the plan of watching and as long as weather permits we go back on January 26 for an 8am appointment.  We will drive up the day before see Mike and get measured for a new TSLO brace and Mike will bring it to clinic the next day.   

We left our visit and headed over to Children's, we visited with nurses, Lauren, Corrine and Kelsey on the floor and then Lauren took us to the PICU.  Elizabeth one of our favorite PICU nurses had asked Dr. Dan about Jeremy and we haven't seen her since we went home.  Elizabeth let J hold her phone while she did a procedure so he was her favorite and he actually called her mom.  Jeremy was sitting by a nurse and Lauren and was cracking the whip in getting them to do computer work, he kept pointing and blurting out words.  We went to our motel ordered pizza and then went to play in the pool and hot-tub.  I almost had my niece convinced that motel swimming pool was actually an old mortuary and if you came down at midnight you could see the ghost playing around, but that they wouldn't bother me and J because we have stayed here so much they know us.  I almost got away with it until I went to update facebook post and she seen, "I almost had my niece convinced" game over.

We left the next morning and headed to Fisher farms in Jefferson City to go through the corn maize.  The trip to Missouri was beautiful, their scenery was already fall colors.  They had gotten their first frost so it was quit muddy especially with J's stroller.  I had to laugh when we finally made it to the road to see how far we had gotten, we were still pretty close to the edge but we had almost made it to the top of the corn maize in which I'm ready to bail and walk back to the farm on the road but they wouldn't let me.  Jeremy played in the corn kennel box.  We took some pictures and I did something stupid and decided to rub a cat's belly while it was laying on it's back and it scratched and tried to bit me so long story short I had to confirm the cat had it's shots and get a tetanus booster since mine was outdated.  We stopped at Osage beach for some outlet mall shopping and had fun.  We got home about 6:30 and was ready to get everything unpacked and enjoy a nice quiet weekend. 

J ended up with a UTI on Tuesday, it happened fast and he was miserable.  He missed the entire week of school but got antibiotics on Wednesday and was feeling full of glory on Thursday.  It was so good to have him back to himself.  He did miss his Halloween party on Thursday at respite and school party.  It was a busy week for me with a training on Thursday 60 miles from home and a conference on Friday 100 miles from home.  I took J Monday to a church where he could have some fun, he did and was totally beyond exhausted when we got home.


Ok so what is the reason for the title.  I never dreamed in all my years of living in Oklahoma that I would experience an earthquake, but Saturday morning about 2-3am, I was woke up to a loud rumble which I thought was thunder, bed shook, something in my kitchen rattled but I thought I was dreaming.  Then when I started to read all the facebook post to see we had a 5.2 earthquake around Prague, Oklahoma.  We were in bed Saturday night when it was a similar a loud rumble, bathroom window rattles, bed shakes and no doubt what it was, this was a 5.6 which is the biggest Oklahoma has had.  Then if that isn't crazy Sunday we reverted back to spring, it was such a nice, awesome day, it was 73 and muggy.  We woke up Monday to a cloudy, muggy day and tornado's in SW part of Oklahoma in November along with a 4.7 earthquake that we felt.  You know see, Welcome to Oklahoma, home of the quaknado.. and Californians saying the only damage was cows tipping over.  I truly think we need a new state song about our 2011 freaky weather we had.

Tangled hair.....

Jeremy is becoming Mr. Personality, laughing, giggling and totally cracks me up.  I love this little guy with all my heart.  My life has been about change for the past 2 years, literally.  I have worn my hair straight for too many years so this past summer decided I needed a change.  I got a body wave because I needed easy and quick.  Jeremy is so observant and watches me, when I fix my hair I turn my head upside down, scrunch my hair and dry on low.  This morning Jeremy hands me the brush and tilts his head down so I brush his hair and tell him how absolutely gorgeous he is.  I go to finish my hair and about now you know exactly where this is going, especially with the title, yes J decided I needed help with my hair and he's probably right but you know them darn brushes don't come out very easy when they get tangled up and in curls.   

Here are a few pictures of our past week.....

He did this all on his own and just smiling



Our new version of fun, mom pushes the stroller fast and then it turns in circles...



Look out Spiderman you got competition




I will teach my cousin Miranda

I have made plans for our return visit to see Super-hero- Dr. Dan and friends at Mizzou.  This trip will be over fall break, so my sister and niece are going with us for some good old fashioned fall fun.  We are leaving at 6:30am to make our 2pm appointment with Dr. Dan on October 20, then head to Children's to visit all our friends.  There is a place called Peach Tree Farm outside of Columbia that has some fun things for the kids to do, so that evening we will go play there and then come back to the Hampton Inn to relax in the indoor heated pool/whirlpool.  The next morning on our way home there is a corn maize outside Jefferson City, we are going to stop to play on our way home and meet up with Julia and Jeremy's friend David.

My nephew mows my lawn and sent me a text that he ran over a snake 3 times to make sure it was dead in my yard.  My dad asked me if I saw it? my answer was heck no and don't want to.  This thought gave me the hibby jibbys because I live in the city limits so them snakes are not allowed in the city.   I realize I grew up out in the country, I was a country girl, we climbed trees, swung from trees, ran around bare-footed in the woods, pulled weeds from the garden, we would ride on each other handle bars on the bike going down hills, we left the house early in the morning and didn't come home til later in the day but you know I didn't like snakes then either.   



"Blessings, and glory, and wisdom, and thanksgiving, and honor, and power, and might be unto our GOD for ever and ever."  Revelations 7:12 

Keeping me on my toes....the little prankster...

There isn’t much time for boredom or dull in Jeremy world. It was about 3 months ago that I went to make me a cup of coffee on a Saturday morning and in order to complete this task I needed the lid to my coffee pot which could not be found anywhere believe me I looked. I am accustomed to Jeremy hiding things so I looked in every hiding place I could think his little mind would prompt him to put this. I don’t know was he actually hiding it or thought this little gadget was neat so he was putting it elsewhere for him to keep. This neat little gadget missing causes me lot of issues because it has a nodule that will push down the button on the filter that will allow the hot water that is sitting in the filter to run into the pot giving me what I want caffeine coffee. I had to get creative and found that if I tape down the filter it will allow the coffee to run out. This past weekend I even looked at new coffee pots and considered buying one but decided I wanted to get an electric skillet. I have been cooking more, getting creative with meals so I decided an electric skillet would be better use and easier for meals plus taping down the filter works. I was cleaning out a cabinet doing some rearranging to make items fit where I wanted them, and throw away old items not used and found one of Jeremy’s 4 year ago lunch boxes and thought how did that get in this cabinet and was moving it to the cabinet that has all of Jeremy’s lunch boxes. I thought I will throw this out, but looked inside to make sure nothing was in it, yep guess what was in there? I pulled it out, stood there for a minute, thought how did I miss this, went over to kiss my little precious boys, cute adorable face and asked him, why? Why there? The nurse asked me what it was and I told her you know how each Saturday morning I tape down my coffee filter for the water to run out, this is why the MIA gadget for months and we laughed.

Jeremy world, living with a non-verbal child it’s hard to tell what he is thinking, what prompted him to put it in there, was he watching me all these months tape down my coffee pot filter, laughing, thinking oh yea mom I am so getting you. I was a youth director, work around Lineman and I have a good sense of humor, I like good pranks, I have played some good pranks, still continue to play them and have had some good pranks played on me. J has a good sense of humor, when he’s doing that little “evil witch” laugh he is probably thinking of something he has done or is going to do in the future to someone.

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

 

My lack of faith....

"Your father knoweth what things ye have need of, before you ask him." Matthew 6:8

This is my typical human behavior sometimes.  I pray and ask God for something, I don't wait on the answer or I get an answer but don't think it's the right one.  I asked God for the verse to start the blog and this was the first verse in my box I read, I thought no, stuck it back in the box, shook up the box twice and each time it was sticking straight out.  I actually focused on the words the second time around.  

We had to make an adjustment back to real life this week after playing for 3 days of last week and taking a break.  It was a little tough on both of us.  Jeremy did excellent for PT on Monday morning he worked really hard, he then had SLP and OT with no time for a nap.  I had volunteered at the Children's Hospital to help take some of the Tulsa Shock players around and then I visited with families.  I arrived home to a very tired little boy.  Tuesday, Jeremy had OT, SLP, his new nurse started and his dad came to visit him, there was lot going on and no time for a nap so he was totally exhausted.  J hadn't been sleeping well this week, his tone is changing, his legs twitch at night or while he is trying to rest and he will stretch his legs out as far as he can.  When the nurse went to cath him on Tuesday she got a large amount of white sediments, Cyrus sent it for culture.  J never ran a fever, he was tired, acting fine and was wetting diapers like crazy.  When we cathed him that evening we got some white sediments, since that time is urine has been cloudy but each time it gets clearer.  I have been putting J to bed early for him to get extra rest, pushing water through him, he's still not ran any fever and we are back to no wet diapers.  I was excited to get to attend the in-service that Dr. Mark Willits, New Pediatric Ortho surgeon for St. Francis Children's gave to hospital staff yesterday evening.  I'm excited of the positive change this is going to bring to so many families.  He is family-focused, not afraid of complex children with syndrome diagnose and mentioned he had got with Engineering on building a wheel-chair and walker for halo traction.  

We are now almost down to count-down of 3 weeks until J is a big Middle school boy.  I'm praying that Misty, J's Para for the past 3 years and HTS for the past 2 years gets to go with him to help ease this transition plus he will continue to progress.  Misty has worked so hard with Jeremy this summer and because of her hard work, he's had an amazing summer with so much progression of skills he had lost over the last part of the school year.  J will not know what to think if Misty isn't there.  

Here are some pictures of J's week.   



Mr. attitude







Happy J



Working on Nook



He fell asleep after Misty took him out of gait trainer

Life skill-brushing teeth