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Friday, December 13, 2013

The Top Teeth are Done!

Each month she struggles more with each appointment. However, this week was the final repair on the top teeth! A huge milestone!


I am hoping that the bottom teeth are easier. I hate to see her miserable for a week after each appointment. Abby is made of tough stuff though and having her teeth restored is important to her, and us. If we ignore it the health of her teeth they will only get worse which will make the rest of her worse as well.. so it has to be done, but I sure wish it was easier. I am dental phobic and to see what going each month does to her makes it incredibly difficult not to cancel the next appointment. It always causes her kidneys to flair, and the pain in her body.. the fatigue,headaches. the GI upset we tread so carefully with..fixing one tooth has a huge cost to her body. Yet, when she grins and shows me "no more holes Mom!" I get over my own issues- if she can handle it, so can I. Abby has the best smile ever. When she smiles it transforms her face. I think because her muscle tone has always left her looking almost "sad" when relaxed, when she grins? It is like sunshine on a rainy day. Worth it.


The only other new thing is we are going to try the Hizentra AGAIN.


To be honest, my GUT is screaming Don't Do it! Abby's gut is screaming as well. Unfortunately and fortunately we trust her Immunologist. We ran all the scenario's back and forth and he made perfect sense as to why we need to try this again. He is one of the first Specialists ever to really seem to get the complexities of Abby and to understand why we do what we do for her. He gets we need to know the science and his opinion- just one or the other is not enough for us when it comes to Abby.

Of course we have taken HUGE efforts to ensure she is not overdosed this time, hoping that will help reduce the reactions. However, she will react no matter what.. ALL of the sub-q and IVIg treatments have corn. The big concern last time was it the corn or the actual treatment? I don't think I have ever seen her so sick before.


There just aren't a lot of options out there, and none that are any safer. We have gotten by somehow with her with zero meds, zero vitamins.. but there will come a point when she gets hurt, or gets an infection or a zillion other things could happen where she would need medical interventions, and as it stands? It would do more harm then good, the reactions to the IV's or meds so far have been worse then any illness for her, having to go anywhere near a hospital is probably the most dangerous thing that could happen to Abby right now. If it is possible, to "reset" her to do something to reduce her reactions to a more manageable level, we have to try.


It also would help her kidneys if she could tolerate a tiny dose of an Ace. For whatever reason on this whole journey her kidneys and their issues bother me the most.. well, the kidneys and her toenails.. I am sorry, but it just simply freaks me out at some instinctual level to see her toenails die and start growing again- to have a gap, it is very upsetting. I would be thrilled if we could stop the toenails, or the kidneys or she could leave the house without getting sick.. I will take any 1 of those things.

We always manage, and Abby is a rare individual to make the best of everything. But, despite what my gut is saying we all feel the need to face our fear on this hizentra. It is a "chance" to make her feel even a tiny bit better, it is worth it. The decision is even harder in that though she is "grown" she still trusts us, and I think she too would have been happier if I had said no way. She trusts me. Ugh.

Best we are hoping for is no reaction(okay, at least less reaction). IF she doesn't have another major reaction it can take months before we saw any benefit.. knowing Abbys body? Who knows what is coming our way.

I am guessing we feel like someone who is about to bungee jump- everything in your mind and body are telling you "Don't Do IT" but once you jump and have faith it works out fine. So I hope.

4 comments:

Laura said...

I have my fingers crossed for a better outcome this time! Hugs!

Jenna said...

When are you guys trying IVIg again? I will be praying. I am glad the top teeth are done.

Diane said...

Thanks Laura! We live with our fingers crossed! :-)

Diane said...

Looks like Monday Jenna- as long as Abby is feeling alright- we figure if we do it at the beginning of the week, if we need to contact Drs it will be easier.

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