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,