Friday, February 3, 2012

Finally seeing some light at the end of the tunnel.

Well friends I'm happy to report that I'm finally seeing some light at the end of a very long dark tunnel.It may be a small patch of light and it may be for only a few fleeting moments,but it is light none the less.

Ariel has a wonderful pediatric high risk case manager,for complicated kids with many medical needs.She has gone to many battles for us and we feel very blessed to have her.

She got us in with the wonderful Urologist for Monday.His wait list was tremendously long,like 6 months out.I'm praying he can help her resolve these issues she still has going on.We also saw her wonderful Epileptologist yesterday.She just couldn't believe all the incompetence going on.

We had a long discussion on what are our options should she not be able to continue on the Topamax,unfortunately our options are few.Especially with all of Ariel's med allergies.Felbatol is one,we don't want to do that,especially after seeing how it affected Daniel or Sabril.The eye issues with that one bother me.

So she has to do the Citra k 3 times a day to hopefully change the acidity in her body so it doesn't make stones.If that doesn't work,then we will have to cross the bridge of a new med for her.

She also increased her VNS.Right now everytime it goes off she chokes a bit and gags,but I'm sure she will get used to the new setting in time.

Yesterday was the first fairly decent day she's had in a very long time.Things were well enough that Gilbert and I were able to go to the movies.lately we've been like ships that pass in the night.I'm always in the hospital,at the E.R. or in Ariel's room comforting her.It was a nice time.

Today is my oldest son's birthday.We will celebrate with a little party tomorrow.Ariel has a friend coming over and the following day after church.She and I are going to a Broadway play in Seattle ,that is if she's well enough.

This is not my favorite musical,but I thought it would be fun for Ariel and I to have a girls day out.

I want to thank you all for the love and support you've shown to us during this time when Ariel's been so very sick.You will just never know how much a guestbook signature a kind word and e-card or phone call will do to brighten someones spirits.

Ariel has certainly felt loved.I thank you all for that.

God bless,Linn

1 comment:

  1. Love the update Linn. So happy to hear the hope in your eye!! xoxo