Wow I suck!!!

Holy Cow! I did not realize that it has been so long since I updated!! Wow!!! I am just beside myself!!!

Okay school starts next week! YAY!!! I am ready so so ready! I also start my new job full time on Sept.1 and I am so pumped! I am going to be a chiropractic asst. So a quick update... maybe not so quick! I am going to put a few posts from Mia's caringbridge site...

So... we did not get any closer to answers with the biopsy! It is so frustrating putting her through this and not getting any closer. She has really been having a hard time with the heat. We are getting ready to start a new supplement that may help with her endurance and strength. It is a pretty busy month for us. She is going next week to get fitted for her own wheelchair. This will be used for those times that she does not have the strength to keep walking or if we are going long distances. We will see the Nerve and Muscle doc in August and discuss the next step.

Here is the big reveal....
A couple weeks ago I took Amelia to the ped for leg pain,cramping and tingling. He ran some blood work and one came back positive. So we ran some more.. one came back positive. So we ran some more... they all came back negative. So to get more specific the ANA and ANA titer came back positive. These are non specific tests that can detect autoimmune disorders. So the testing that came back negative was for the more specific disorders mostly Lupus! Although we are so very thankful that she does not have Lupus again we come so close to an answer only to slam face first in a wall! Her ped feels at this point we should stop where we are and wait to see if anything new develops in the next 5 years(symptoms and tests). Nate wants to stop ALL testing at this point. I am kinda feeling a little ganged up on. I am the Mom I need to fix this and help her the best way I can!! Nate says that the KC docs can pick one more test to do in their search but that is it. I of course disagree.. not a good spot to be in!
So where does that leave me.... PISSED!! I am not mad at my hubby because I know that he is just tired of seeing his baby go through painful tests. I am not even mad at the ped because I know that he too cares about Amelia and does not want to put her through more painful testing until something changes. So why am I pissed???? I am pissed because this beautiful,sweet and loving little girl has been allowed to struggle for over 3 years. i am pissed that this is allowed. I am pissed because no answers have been revealed! I am pissed that we have kept our faith we have lifted her to him and in his hands and yet she still is suffering! WHY???? Why does she have to NOT be able to keep up with her friends yet you wont tell us why! Why does she have to struggle daily to grow with the assistance of a tube in her stomach and you wont show us why!!!! Why are you allowing this to happen????? If God is so loving and takes care of his children then why is my daughter suffering, why has he not healed her or provided us with a name to the monster that is trying to wreck her body!
You can lecture me on what I just wrote all you want. But i will tell you this... until you go through watching your baby in pain, until you have your child ask you to remove the one thing that is keeping her stable because she has realized that she is different from her friends, until you have to make her wear leg braces even though she is crying because everyone else gets to wear flip flops.. until you go through that and not have any clue what you are fighting against.. well then you can lecture me on being mad at God!!

Well that is probably the jist of our chaos lately!! Some days I think that it would be easier to just curl up and hide! Then of course I see my awesome kids and I know that I fight for them and always will!!

Just for Keely :)

Oh girl how I have missed you!!!! I am updating this for you :)

Me

I am once again struggling really bad emotionally and am going BACK on meds! UGH!! But it will be better in the long run. Funny how hard it is to run a household when you are hiding under the covers.LOL

Mallory & Brayden

Doing great!! Very mouthy and lots of attitude but GREAT!!

Olivia

Doing pretty good. She got the nasty Flu but it recovering pretty well. She is going to see a sleep doc due to her CRAZY sleeping. ALL over the bed, talking,yelling and moaning. Praying it is nothing but not wanting to take any chances.

Amelia

Ahhh my Mia. Well next monday she is having a muscle biopsy done becasue the yfeel that she does not have CP but in fact has a mitochondrial disorder. This is where my anxiety and stress is stemming from. I will fully admit that I am scared to death. ASthma doc said today that this would explain her trouble breathing when she has a virus since her muscles are affected the most.

So that is where we are at. I am going to try and call you but if I miss you please contact me by email or something!!! OH BTW... are you on any Yahoo groups????