Small victory

There’s no news yet about the regaining services for J.  We are in limbo and it’s frustrating.  I am really grateful though for people who have stepped up and helped where they can. It’s really encouraging to see that and to feel love from people.  You know who you are.  Thank you.  We are also grateful that there have been even more people praying for us.  Thank you again.  We need it every day.

So, now onto the small victory.  Things are beginning to fall into place for us to finally get J the MRI that Dr. D would like to get for him, as well as me.  It’s huge that Dr. C (primary care doctor) is on board with it. For anyone not familiar with NF, it’s kind of controversial regarding getting an MRI at this stage. You see, J isn’t really symptomatic for the need necessarily, but there could very well be tumors growing where they shouldn’t be without us knowing, especially with how quickly he has been growing them just under his skin. Tumors is the easy word for what they really are.  They are called fibromas. They are benign little tumors that grow on the nerve endings. J has, what I guess at this point, to be about 15 of these little fibromas.

Dr. T isn’t a huge fan of doing the MRI, but for my peace of mind, we need to do this.  That, and shoot, we’ve hit our deductible for the year, so let’s do this while we can. This mama needs to know.  I need to know how things are shaping in his brain and how things are going for him. I want to get a baseline of how his brain is doing so that we can keep an eye on him. The advantage of things is that if his scans come back totally clean, we then will be able to monitor changes in him for the future. This is a good thing for sure.

Now to just get things over to the hospital we are going through for the MRI tomorrow and be able to get things scheduled soon. I can only hope that it’ll be soon. I don’t want to wait too much longer for this. I really don’t. I know that God’s got him, but to have an idea of how things are shaping up will just be a bonus. Well, that’s about it for now.

Quick Update…

Hey there friends…I know it’s been a while. lol…as you can imagine, life is really crazy right now.  School is underway and I’m homeschooling J this year.  It’s been really awesome for the most part.  I seriously love it. J loves it.  It’s awesome. J is also really busy with his therapies at Easter Seals, which is great.  We do need prayer that we can keep him going though.

There was a billing error on their end and I never got a statement that we had a bill.  Crazy!  They thought I was nuts to think that we didn’t owe anything…I was hoping…but I knew we did, but without a statement to say we owe, how can I pay?  So, anyway, I’m currently doing a fundraiser through Tupperware to help get his bill down so we can keep his services. If you wish to support it, please feel free to go here: http://order.tupperware.com/coe/app/home It’ll say welcome to James Gabhart’s fundraiser…but that’s only because Tupperware is going to be making the check out to my husband. I’m hoping to close it tonight, so it’ll have to be a quick turn around for you if you’re wanting to support that way.  If you want to donate directly to his bill, let me know and I’ll get you the information for payment to be sent.

C is doing well with preschool…he actually loves it.  He gets to ride the bus everyday.  A has fun standing at the door each day and says “Bye Bubba!”. So cute.  I’m really blessed.

We are getting closer to being able to get the MRI done for J.  Our local neuro, Dr. D has gotten things figured out with the hospital we are looking at going to for it. Now it’s up to our primary care to give the ok and prescribe the anesthesia J is going to need.  I highly doubt my squirmy boy is going to hold still for it…especially since they are recommending it to have contrast done too since it’s the first one and we don’t want miss anything.  Hopefully we can get it set up soon.

Well, I’m getting ready to have a night away from my kids. I am blessed to get to go to the Women of Faith Conference in Indianapolis this weekend.  Yay for my ladies bible study going and being able to go too. 😀  I am going to do better about posting a little more frequently…life has been so so crazy trying to adjust to doing school and therapy and doctor appointments. I don’t feel like I have time to breathe half the time! lol.

Until next time friends….

Small breath of air

After waiting almost a full 24 hours, I heard back from Dr. T’s nurse.  Nurse D is incredible.  She is so patient and so willing to listen to fears and frustrations.  She’s there to help talk mom’s like me down from being crazy concerned.  I knew I liked her when we met back in May. 😀

So, we get to go see Dr. T on the 17th.  I think a big part of it is just to help keep me calm until I can learn how to roll with the punches of NF.  It is good that I’m being so proactive, but I still have a lot to learn.  Something that’s great to have learned is that Dr. T did not notice ANY areas on J that could grow into plexiforms.  That is a huge breath of air for me in the grand scheme of things.  It could be that he never develops them, and honestly, that would be just fine by me.  I guess those are things that you’re born with and they don’t just appear.  He’s the one who has been studying it for 30 years, who am I to argue.  I’m just a frightened mom who doesn’t know much. lol.  I’m learning, that’s for sure.

Each day it seems like I’m learning something new about NF.  I welcome that, although I feel so very overwhelmed most of the time.  To know that for the most part he seems healthy, is huge.  While we are down there, I’m going to be talking to him about doing an MRI.  I understand that things are going to show up that there is nothing we can do about them.  But honestly, I would rather know about them than not.  It’s a peace of mind thing for me.  I feel like I need to know, I need to learn more, and at this point, this is one huge way I can learn more about all of this.  I just want to know and understand everything that is going on with my son.  Is that too much to ask? Please, for the love, put my mind to ease so I can stop being such an internal basket case. I can only hope and pray that Dr. T agrees to put my mind to ease. It would make my life feel a bit better at the moment.  It would also give Dr. D something more to be able to learn about NF as well. He’s incredible, and I wish that I could bring him with too for this appointment and let the two doctors “duke it out” over whether or not to do an MRI.  That could be an interesting sight. HA! Shoot…then I could take care of two appointments at one time for that day! LOL.