Saturday, December 31, 2011

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 

Thursday, December 22, 2011

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…….. 

Friday, December 16, 2011

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.......