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 going to be posting Mattie’s updates here and on Caring Bridge. I have had requests for both.
After the stroke like episode we have decided to get Mattie back on schedule with seeing neurology. We haven’t decided if we will go back to our old doc or if we will be moving on to a new one. I hope to make a decision in the next couple of days and get an appointment on the books. Thankfully she has not had any more symptoms, and the ones she did have all seem to have faded.
We are still working on figuring out what is going on with Mattie’s swallow. She had an upper GI, and also a Oral Pharyngeal Motility Study. Both studies had some minor abnormalities….but nothing that the doctor feels like can explain the difficulties she is describing. The final report on the OPMS is not in, I hope it will shed some light on the problem. In the meantime they want me to record Mattie eating and send them video of the times she is having problems. Hopefully we can get it on video and sent in soon. Every time I break out the video camera she seems to have very little difficulty.. go figure.
We had a cardiology appointment last week. They have now confirmed that Mattie has diastolic dysfunction. Her heart is not fully relaxing between each pump. I wish I could tell you all more of what this means for us.. but it like most everything else is something that we will just have to wait and see. The doc said that he will start her on beta blockers when she turns 13 unless she begins to have symptoms before that point. They will also continue to do a yearly echocardiogram. I have been saying for a little over a year now that I was not going to borrow trouble and worry about this diagnosis until it was ours (they have been watching and suggesting this diagnosis for a year). Now that it is here and ours…I am still going to give it to God. Worrying happens, but it can’t be what or who we are. I think my attitude about it over the last year has served me well and I am going to hold onto it as long as I can. With each new pill and each new diagnosis I become more and more convinced that God has big plans for my Mattie.
The wheelchair……It is amazing to me that we are still talking about and fighting for this chair. It seems simple. The child needs a chair, the insurance company should provide it. Anyway, that is not the way the world works. I got a call today that they want the seating folks to come out and look at our house. I am afraid that all of our stairs may cost us our chair. Please pray that they are able to see the situation for what it is and that the house will not be a problem. (Feel free to pray for a new house too) 😛
Mattie got her orthotics last week. Other than some minor hiccups with the purchase of some new shoes it is going really well. They are only causing some minor irritation and seem to be helping keep her in the proper position. I am not sure how long she will be wearing them. Hopefully we can correct the problem and get her out of them soon.
The symposium was a great experience. I am so thankful that I was able to go. I am doubly thankful that the UMDF helped me out with some scholarship funds to help me get there. It was great to see so many people, new friends and old. The whole thing was surreal. I enjoyed sitting in on the family sessions, sneaking in the back for some of the scientific sessions, dinners with friends, talking to other mito docs, and getting to hang our with our own Dr. K. I hope to make next years trip a family vacation. They symposium will be at the nation’s capitol next year.
We will be in Ohio next week having a follow up with the Chelemsky docs. They are the ones treating Mattie’s dysautonomia. Mattie and I will be going alone this trip. I am a little freaked out about flying into Akron and having to get a rental car. Those of you that have known me for any length of time know that this is like my own personal nightmare come to life. We also don’t know for sure where we will be staying. I will give the Ronald McDonald house a call the day before we leave and hope they have a room that we can use.
Mattie says she would like to start blogging. I am looking now for a kid friendly site. Once she has something set up I will be sure to forward the site. If you know of anything please let me know.
Thank you to everyone that has been praying for our friends Zach and Eithene. Sweet Zach went home to his heavenly father. Eithene is fighting infection and is struggling mightily with pain. Please pray for peace for both of these families. Please also add Olivia to your prayers. She is struggling with her liver right now. I don’t know all of the specifics… but this family sure could use some rest.
I guess that is all for now,
Mattie got new orthotics yesterday. She has been about as happy about wearing them as any one would be. She didn’t seem overly upset, and liked the butterfly print she picked out….. Until today… Today we went to Target to look for new shoes. While shopping I noticed how aware Mattie was of the shoes the other young girls were picking out. The young lady that commented that the “sneakers with the butterflies on them are for babies” took a small piece of Mattie’s soul. My children are not materialistic,they are not brand savvy, they don’t care how much something costs, but it seems that blending in has become super important. It is so hard to watch them care so much what other people think, but also makes me so aware of how often I do the same.
In the end she found a cute pair of purple Chucks that look great with her butterfly braces. Pray for me next week when we try to find a cute pair of dress shoes. 🙂
Blast from the past… hard to believe it has been 6 years.
This was her “Look at my face” Face. 🙂
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.