So today we had an appt with the MITO PA. She is the most wonderful person that works for a doctor’s office, I mean the best one out of all the medical office people that we deal with ( I love her and our PT). I mean she is nice, loves Zach and is wonderful at explaining things, she answered all of Adam's questions and all of mine and even asked Zach if he had any questions. She used to be Zach’s NEURO PA and we lost her to this MITO doc. While I will miss her I am so thankful that she will be explaining things to us and that she is there to help other families through this journey.
I know that God has been in this whole thing but now it is all setting in and I am beginning to wondered how in the world. I mean I know that it will work out but on the same hand it makes my head spins.
So here is the update for those that were waiting on the Specialist appt. update. Zach does have MITO we aren’t sure what type but he does have the diagnoses as MITO, we are waiting for some more of the tests to come back to see if we will know or if he will always have plain MITO. Having this diagnosis may open up some doors for some assistance but we are still waiting to find out, it does mean that he qualifies for EI next year when he turns 3. I am not sure what it means but I am sure that I will find out more as we go. Finally getting this doesn’t change how we treat Zach and honestly it doesn’t change what we do for him. The main thing that this diagnosis does is it allows us to know that we aren’t fighting something that we don’t know about. Although a lot is unknown about MITO and all the things that go with it, at least I know that I am pushing him for a reason. It also allows all the comments that people say to now roll off, although I will hear them they will no longer hurt as badly cause we do know that Zach has a medical issue and that we are doing all that we can do for him and that we have been doing all that we can for a long time.
I walked out with a script for CoQ10, which is a supplement/medication that they want him to be taking, it sounded like they wanted us to get it as soon as possible. This sounds easy but I am having to figure out what to do, where the nearest compounding pharmacy is and then I am going to have to take the script see if insurance will cover it and if not, we have to find the money to pay for it. There is a chance that this CoQ10 will not only help with his energy levels but there is a chance that it will also help with the pain that he is having. Besides the amount that it costs the other drawback is the time that it takes to be effective. They cautioned us that it could take up to a full month to be effective.
I also walked out with a script for Syringes which the home health people won’t deliver because they say they don’t carry the small ones. I have to come up with a system to give him all his meds and get the times all down. Since he now has medications that are given 4 times a day. So this is also one of my battles that I have to figure out and win… how do I make sure and keep up with all of the medications that I have to give Zach?
Honestly my head is spinning so I am going to put the prayer request now for those that I have told to look here….
- Pray for Adam and I as we learn about MITO and teach Aden and all those involved.
- Pray for insurance covering this medication (CoQ10) or for the money for getting it
- Pray for money for the med-alert and for the services involved
- Pray for money for the foundations that will allow us to be connected to others with this condition
I am sure that there is more but my head is spinning so much I can’t think of all of it now.