Days like yesterday make me wonder if I am too hyper vigilant.. If I worry too much. Is her mito really having all the affects on her that I think it is. I know it is crazy.. but you would be amazed at how much time my brain spends on just these types of questions. She hates all of the vital checks and restrictions. When I see her playing without pause and smiling.. it makes me wonder.
Then we have days like today where she wakes up puffy and sore and tells me she only has two marbles/spoons.. That is not a good start to the day. She tells me to please call and let them know she can’t make it to aquatic therapy. She lays down on the couch and cries if you look at her wrong. Today, she is paying for yesterday’s fun. She HATES naps, but I know that is what she needs. So the dance begins. I find a way to clear the house of all the other family members. I offer to snuggle her on the bed if she is interested… then I sneak away as soon as she starts to sleep.
I find myself in those quiet moments praying for healing.. begging for healing. Then praying for God’s will. I am never quite sure which prayer is the right one. I know that our God is a healing God. I know that God can work miracles, and can do anything. I also know that sometimes the answer to our cry for help is sometimes just going to be no. Not that he doesn’t help.. just not always in the way we ask him to. It sure can make a person crazy. I pray for healing, then his will, then find myself wondering if too much doubt in my mind and heart is why God says no. I realize that their is no truth in the statement.. but man it is hard. I feel like my prayers go round and round with these same lines. I wonder if it is this difficult for me to wrap my mind around what it must be like for Mattie. She is on fire for God! I have also seen her yell and shake her fists at him. In the end she probably has it right. I am sure that God doesn’t mind us being mad.. he is enjoying the conversation.
No real aha moment in this post.. just venting a bit I guess.
I am sending this out to ALL.. Feel free to delete, respond, or forward as you see fit.
To ALL of my friends….PLEASE take a minute to read this. I need you!
Our dear friend Katie have nominated our family to win Pigeon Forge’s Taking back Vacation Sweepstakes. The prize for June is a 2 night vacation for their family and assistance with utility bills for the next 12 months. In July, the prize is also a vacation and assistance with mortgage payments. Several people have asked for more about Mattie’s story, so please feel free to pass this on to anyone that you are asking to have vote for them.
Mattie has always been a happy, loving girl. Even as a baby, she was laughing all the time. There were things about her though that didn’t seem quite right. For instance, she only nursed from one side, and she would cry and just lay face down when we tried to play with her on her tummy. Mattie’s medical journey began at the age of 6 months when we discovered that she had Klippel Feil Syndrome. The syndrome is considered an orphan syndrome and is quite rare. It took several months seeing specialists to finally get a diagnosis. The major issue with Klippel-Feil Syndrome is that Mattie had fused and malformed vertebrae in her neck. That was making her neck tilt to the right and whenever she looked at you, her head was tilted to one side, kind of like a puppy when they don’t understand you. She was at risk for serious injury if she landed on her head or neck from a fall, so there were numerous activities she wasn’t allowed to do that other little kids got to, like somersaults and cartwheels.
From that point on, it seemed that Mattie couldn’t catch a break. We kept finding more and more things wrong. The base of her spine was malformed which made it painful for her to sit, we discovered she is deaf in her right ear, and has a mild hearing loss in her left. At the age of four, her tilt was beginning to increase and the difficult decision was made to straighten out her spine as much as possible and fuse her neck vertebrae to stop the curvature (she was at a 45 degree tilt at that time). Since she had been used to seeing the world from a heavy tilt for so long, she had to relearn to walk and balance all over again. She has been in physical, occupational and speech therapy for as long as I can remember, primarily to keep from losing abilities rather than to gain them. Mattie has always been weaker than her peers, but much more so in her right hand. After many years of working to strengthen the muscles, we found out she was missing some very important muscles in her right hand. Surgery corrected the problem and gave her the ability to open a bag of chips or a candy bar and other stuff like that that we all take for granted so often.
One of the big issues for Mattie though was unsolved until this past January. She would have difficulty making it through a day of school without being absolutely wiped out. There were days where she would come home and go to bed and sleep until the next morning. She could run around with the other kids, but she paid a high price for it afterward. We couldn’t figure out what was going on. She had what we referred to as “gray days” where she would wake up and have a gray pallor about her face. What we though was her normal temperature was around 99.5 degrees. She would have pain in her legs and just be worn out from the word go.
Every year, we have been given a new [additional] diagnosis for Mattie. The most difficult news I would say since finding out about the KFS and her hearing loss was this past January when they found out that Mattie has Mitochondrial Myopathy. Basically, her body burns a tremendous amount of energy to create energy for her muscles and organs. When she uses energy it takes her longer to refill the tanks, and the tanks are incapable of ever being full. When she pushes herself too hard it is very damaging and dangerous to her body. As a result, the wheelchair has gone from occasionally used to a frequently used. She has to “spend” her energy frugally and wisely, which was a foreign concept to us.
It is difficult to watch any child go through the 12 surgeries she’s been through in the past 10 years and having to take all 84 of the pills she takes each week. However, Mattie is such a sweet girl who is so patient and enduring of all the numerous doctors’ visits and procedures and surgeries. She is a very intelligent, talented child who sets the curve in school, reads anything she can get her hands on, and is an accomplished pianist. She doesn’t understand why she is the way she is and unfortunately we don’t always have an answer for her with those tough questions.
Steve and Shelly
Email me if you would like a daily reminder to vote.
(Below is a note from Katie)
As told, Mattie has endured a lot in her 10 years. But often overlooked or shadowed are her two siblings. Alyssa is 12 and a phenomenal support of leadership and guidance to Mattie. She is always there to help her mom or Mattie with anything and displays a wonderful moral compass for others to see. Alyssa is not your typical pre-teen worried about name brands and new dance moves. Rather, she is a big sister, a wonderful daughter, an aspiring young lady who does good because it is the right thing to do. Then there is James who is 8. James brings spunk to the family. He is full of energy and LOVES learning new things. Books and new games are something he doesn’t do without! James is also always there, ready to help and willing to do what ever it takes to make sure things get done. These kids emulate a community that most kids their ages have no concept of. Sure, there are times where they would rather (and do) choose to do something different, but they get it. They understand that sometimes your extra “umf” is what gets someone else to the next moment. That little bit of above and beyond….goes further than you originally thought.
So I have nominated this family, not because I feel sorry for Mattie (though there are PLENTY of times my heart breaks for her), but because the entire family needs a break. Insurance companies don’t cover Mitochondrial Myopathy therapies and treatments because the diagnosis is so expensive (compared to that of cancer) and so newly discovered that so little is known or understood. The supplemental medications Mattie has to take JUST for this run in excess of $400 per MONTH! She needs a new wheel chair, but insurance is refusing to pay for that because she can “move about her house”. It is ridiculous the battles her mom and dad must wage daily, both in the home and out.
A vacation is something that is NO where in the budget. Please help me pass this story on and get them this vacation. To you and me, it is a moment every day using minimal effort – for them….it is so much larger….SOOO needed….each day, go to http://bit.ly/cGqWj0 – sort by vote and look for Shelly L. from Sugar Hill, GA. Every vote, every day counts….
Thank you for taking the time to read my novel and please pass it on. Pass it to whomever you can to get help voting for this family….they need your support.
Mattie had a eyelid chalazion cyst removed from her right eye today. She also had an EGD, or Esophagogastroduodenoscopy for those of you that like big words. 🙂 This was our first procedure requiring anesthesia since our mitochondrial myopathy diagnosis. I was a bit of a nervous wreck, but the hospital staff was amazing. They had all of the information on Mito and took great care of M. They had some difficulty with her intubation. She came back with a bloody nose and a black eye. She looked like she had been in a boxing match. Anesthesia was a bit of a bugger…but we had a great anesthesiologist!
The removal of the chalazion went well. They expect that the eye will be black and blue for a few days. We will go in next week for a quick check up. The eye is a little scratchy, but doesn’t seem to be causing her any pain.
Her EGD did show some inflammation in her Esophagus. The doctor told me that they would have the biopsy results back sometime next week. She said that would show us if the inflammation is from acid or allergy. Once we know what is causing it we will come up with a plan to fix it. I am thankful after 6 years of reflux medication that we will finally be getting some answers as to what is causing her pain.
All in all it was a pleasant experience and we are glad to have it over with. I will post an update again once we see the eye doc and get the biopsy results. Thanks for you prayer.
Don’t forget to vote for us!! Click to Vote!!! Sort by votes and we should be on page 2. Look for Shelly L. You can vote daily!
Orthopaedics- Mattie fell off of a swing 3 weeks ago today. She managed to break the end off of her radial bone. (radial head fracture) Mattie had to have her arm set in the ER. She was a trooper as usual. They normally knock the kids out…but we were having anesthesia issues and she had it set with just a block. She had an orange cast for a week and a pink one for a week. She got her cast off last Thursday and has started physical therapy and occupational therapy to try and gain back some of the range of motion that was lost with the break. The doctors were torn on letting her try the cast and therapy or to put pins in the elbow and cast her for 6-8 weeks. In the end they decided to get her in and out of the cast and get the arm moving asap. We will go back in 2 weeks and see how things are progressing.
While we were in having the arm looked at we also decided to talk to the docs about her spine. We haven’t had a local spine doc in 7 years and decided it was time that we see someone local. (We will still follow up with Dr. Betz in Philadelphia) Mattie was given a script for a new cervical collar and we picked it up today. She will use the brace to help with muscle strain on days that she is feeling more fatigued or having pain. We will have a full spine check and x-rays when we go back for the arm check.
Eye- We noticed a small bump on Mattie’s eye 6 months or so ago. She went in for an eye exam and they told us that we needed to have the bump removed if it didn’t clear up in 3 months. That was 3 months ago and we are going to be heading in to surgery next Friday. The bump is just a blocked oil gland and it should be an easy non eventful surgery. The eye doc told us that Mattie will need glasses some time in the future. She is less than thrilled. Hopefully it will be a year or two before we have to get them.
GI- Lots of icky details here that I am sure you would rather not read, and Mattie would prefer I not share with the world. Mattie will have some testing tacked on to her surgery Friday. She is having a scope of her esophagus, stomach, and the top of her small intestine. They will also be taking a couple of biopsies. This should also be an easy procedure with short recovery time.
Mitochondrial Myopathy- We met with the docs again this week and got a few more test results and info. They believe the mito is a nuclear gene defect.. but still have not identified it. Her labs from our last visit look pretty good. They drew a little more blood to take another look at her Vitamin D. They also upped one of her other supplements. She is up to 82 pills a week. YUCK! We also discussed her autonomic issues and got a bit more information on how we need to be caring for M. The fevers that she is running when she is out in the heat or exercising are causing her to have spiking lactate levels and also increase her alanine amino acids. Long story short, she can’t run any more fevers. We are looking for a cooling vest for the summer and are trying to come up with a plan to keep her cool and still let her be 10. It sucks.. not sure what else to say about that.
Pulmonology- Mattie’s pulmonary function test looked pretty good. She is having a lot of dips in her O2 saturation. We are keeping a diary of the numbers and may need to do some more testing in the next few months. They talked to me about doing another sleep study and an exercise test. She seems a bit overwhelmed with all of the medical junk going on at the moment and we are going to try to hold off on the testing until our next visit in 3 months. They discussed the possibility of Mattie needing oxygen at home or just better asthma care. We will know more when they look at our diary in a couple months. They have also advised us that if the numbers dip below 92 that she needs to go to the ER. We have done that a few times in the last few months and am trying not to worry about it too much.
That is all I can think of at the moment. I will update more next week. Thanks for your prayers…. and thank you to my wonderful friends that put up with my craziness, sanity trips to Huddle House, dirty house, and insane need for child care. You know who you are, and I love you!
Back in June of 2004 Mattie was a featured child with Hugs and Hope. They are an amazing group of people. They have sent us happy mail, Christmas gifts, support, and just a general feeling of not being alone. If you get a chance drop by the site and send some happy mail!
The Hugs and Hope Club for Sick Kids is a ministry devoted to encouraging children battling critical illness and their families.
*The HUGS and HOPE Club provides the rare gift of friendship: a listening ear, a sympathetic heart.*
Our mission is to share God’s love and provide friendship and support to families of sick children who live within the United States by sending happy mail and offering various activities to children between the ages of 2 and 17.
We do this through the following projects and programs:
* Mailing cheery cards (a.k.a. “happy mail”)
* Providing balloon bouquets to hospitalized children
* Granting children’s wishes
* Providing Christmas gifts through our Elf Project
* Assigning a personal “parent pal” who encourages, cheers, and supports the family in crisis.
“Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction so that we may be able to comfort those who are in any affliction with the comfort with which we ourselves are comforted by God. For just as the sufferings of Christ are ours in abundance, so also our comfort is abundant through Christ.” (II Corinthians 1: 3-5)
This is an update from Mattie’s care page. I am thinking about moving everything over to my blog. Many of you have told me that you don’t like having to log in to read the updates on Care Pages. Let me know what you think.
Thank you to my many friends that have sent reminders to update Mattie’s page. Life has been a little crazy and I am really behind. Steve had meningitis for a few weeks and we have been super busy with the kids schooling. Mattie has had several updates. Hopefully I will remember everything. 🙂 We have started attending private physical therapy again. Mattie enjoys seeing the therapist, but is over doing all the hard work. We are working with a therapist through GVA, and also privately. She is getting a double whammy. The therapists are working with Mattie to strengthen her core, reduce pain, and stretch out her hamstrings. She continues to see the school OT and SLP as well. The occupational therapy evaluation brought a bit of a surprise. Mattie has lost a good bit of strength in her hands since her last evaluation 2 years previous. This alarmed all of us. Mattie’s doctors ordered an MRI to see if she was having some sort of spinal cord involvement. The MRI was clear. We contacted her neurologist to figure out what to do next. She suggested that with all of our unexplained symptoms that we should go to see a molecular geneticist and have Mattie checked for Mitcohondrial Myopathy. We have started the process to get in with a specialist. The process is very involved. They will not give you an appointment until they have looked over all medical records and have collected a complete family medical history. I have submitted the paperwork and hope to hear something soon. If they do decide to see Mattie she will also have to go in for some very extensive medical testing. She will have a muscle biopsy, spinal tap, and lots of other goodies. I am not looking forward to the testing, but it would be nice to finally have an answer. (Mattie is not aware of any of this. If you see her please do not mention it. We will tell her once we know that it will be happening for sure.) We also had a trip to the pulmonologist. I was very hopeful after our last visit that we would be able to stay off of all of the medications we have been weaning off of over the course of the last year. The pulmonary function test did not go along with our plans…. Mattie left with 5 new prescriptions and was a very unhappy girl. It is still hard for me to wrap my mind around the fact that she has asthma. The only place she has had an asthma attack has been in the hospital after anesthesia. The last appointment makes me realize that she really does have asthma and we need to be better about watching her breathing. We will be heading to Philadelphia in Dec. She will be seen at spine, hand, and leg clinic. They keep changing the dates. I will let you know when we are going as soon as they let me know. Thank you for your continued love and prayers. I will update more as I can.