Life the normal

I am sorry it has been so long between updates.  Life is passing by and here we are in November!  I can't even began to describe the feelings in my heart because honestly it is indescribable.  I am so overjoyed with the accomplishments Kamiree makes on a day by day basis and then feel trampled by the human emotions that come with having a special needs child.

Point one...we went to Colorado Children's Hospital on October 29th to do a repeat EEG on Kamiree.  I honestly felt bipolar that day.  This was when we would find out if the drug Keppra was working or not.  My mother instincts told me it was not...or at least it had taken my sweet girl away from me and we were living with her evil twin.  I love Kamiree dearly and when Chris and I sat back and realized all the changes we had made in our lives so that we wouldn't have Kamiree cross the going insane line and beating us all up it was a lot!  My mom had come down to watch the other kids for the week so she got to see how crazy I am also :)  I went from not being able to sit still to crying in a hyperventilating way all in a matter of minutes the morning of Kamiree's EEG.  I always feel like we live a normal life until tests come up in Kamiree's life.  Then I realize she is not "normal" and she is hurting inside and not able to tell us and so I feel helpless.  I wish that I could take all this from her and just give her one diagnosis instead of 4 or 5.  That's our normal, that's her normal....

Getting the electrodes on is always the hardest part.  Unfortunately, Kamiree has sensitive skin and they seem to break through her skin and give her scabs when they come off.  The smell is nauseating and a headache is imminent.  After the tears goes long hours begging for the electrodes to come off because they hurt.  I love children's hospitals because they have instant Disney movies, so that really does take away hours and hours of time that wouldn't be pleasant.  She watched Cinderella twice and just like that it was bed time.  I always just stare at the EEG screen seeing what is going on, so it was a blessing and a curse when the nurse shut it off and I couldn't stare at it.  Sleeping is always great as you have to keep unwinding the electrode cords from around your daughters neck as she somersaults left and right all night long.  

Thankfully, she had lots of activities to do from her family!

Thankful for the song and verse, Joy comes in the Morning!!  My Aunt Jodie had come in the morning to spend some time with us since Chris went back to work.  By ten o'clock the neurologist came in and said the spikes are down at night and so medication is working!  Here is one of those "up" times :)  He recommended getting her off the Keppra quickly (Praise God) and going to another medication that does the same thing but does not have the evil twin side effect.  We do have another ambulatory EEG set up for the end of January to see if this new drug is working.  This way we can get the electrodes on but she gets to sleep at home instead of a hospital!

God is good!  He is good when Kamiree is mean/evil/grumpy and good when she is loving/kind/a blessing to be around!

We had Kamiree's teacher conference and were told she has already come to 85% sign language for her age in just 12 weeks!  Her speech therapist tells us that she is constantly going up a level on her speech every other week.  We know she has a LONG way to go, but the improvements make a LONG way not so bad.  We know that God is in control, and we love Him even though our life is not perfect.  We love Him even though our daughter is special needs.  And we even love Him when live seems to not be able to be any harder. 

Kamiree's birthday was November 2nd, and so now we celebrate the fact that she is 6 years old and is able to say sentences!  Maybe by 7 she will be telling us stories :)  

Happy 6th Birthday Sweet Kamiree!  Keep on fighting to talk!