Growing Up too Fast!!!

Our little girl is turning 8 tomorrow!!  It's a bittersweet day as this was supposed to be the year we would head back to Wyoming. When we first moved to Denver we had lots and lots of tears from pretty much everybody in the family (including me).  Kamiree would ask every day when we got to move back "home" and we would tell her when she turns 8.  She used to need a time for everything, so there was no guessing to what was going to happen.  Last week we were heading to school and Kaden brought up the subject of when we might get to move back home.  Kamiree apparently was listening and yelled up to us that it wasn't time to go back yet, she still needed to see Bri (her speech therapist) so she could talk better.  That brought tears to my eyes that my almost 8 year old knows what she needs more than I do now.  I'm so thankful that she can comprehend this situation and knows that she wants to talk better :)
Today Kamiree and I headed to go get pedicures together for her birthday.  Not only was it enjoyable but there were no outbursts and we were gone for 3 hours!  Anybody who has read this blog for any amount of time knows this in itself is a huge accomplishment.  We then headed to Red Robin for lunch.  This is the significant part of the day because in one of my past blogs Kamiree and I had gone to this exact Red Robin and actually sat in the same booth 3 years ago.  She at that time had a complete melt down, this was before she could really talk, and people were glaring at us all around.  It was a nightmare and I kind of pictured that it could go that way still if she was overwhelmed.  It was the complete opposite.  She was telling me all about her friends at school, about how much she wanted to play basketball, how much she loved me, how much she loved Kaden, how she likes new clothes....ect.....  I then told the server it was her birthday so she brought back ice cream and a whole crew to sing to Kam...and...she didn't freak out!  As she sat there and smiled at me eating her ice cream, I teared up.  I just can't believe that we are this far in the journey already.  She has turned into a confident little girl that doesn't even care she doesn't sound "normal" when she talks.  She isn't giving up when I think I would have.



I have thought of this adventure as fixing Kamiree but I think it has made me grow more than sometimes I'm comfortable with.  Not only has she had to make new friends but all 7 of us have had to.  I looked at this as a short 3 year side street, and it might end up being a 15 year interstate.  I have kept walls up knowing that we weren't staying long, and Kamiree's like let go mom, just have fun and enjoy me where I am right now...quit worrying about what happens next year, but settle in and hang on to this fast life.  Proud can't even begin to tell you what I feel for Kamiree.  I know that she is still going to have bad days (come on don't we all!), but her story is a story of perseverance and we will get to continue watching her become all what God has her to be.

Bad News = God's still in control

    Today we went in to see the results of Kamiree's EEG from 2 weeks ago.  We are pretty used to just hearing, "looks better see ya in 6 months," but that wasn't to be the story today.  Her abnormal EEG is up to 39% which is up from 27% in November.  While this might not see like a lot, it essentially means that her brain is having abnormal waves 12% more than it was in November.  I didn't expect it, but honestly I am to the point that it takes a lot to make me cry and push me down.  Kamiree is still improving with her speech and communication skills, and yet medically she is not getting better!!!  I'm more frustrated that the answer is, "I don't know," to what's going on with her.  I don't expect every neurologist to know everything, because the brain is insanely big, but I hate hearing they don't know what's wrong with our precious daughter.
    After the, "I don't know," it's always that they have read this study and that study and really there is no new information on why some kids have abnormal EEG's and function normally and why some kids have abnormal EEG's and struggle with academics, speech, act…  I want to know why!  I want to know why Kamiree has to struggle and what the root is.  Thankfully, our neurologist seems to be curious as well so we are basically starting all over.  We are starting with an MRI, pending approval from the insurance, and then going to a neuropsychologist, then genetic testing.  We want to know, but in reality it won't change anything except we know.  If you saw Kamiree walking down the street there is no way you could pick up that she might have some special needs. Unless she was screaming, and in that case people usually like to stare, or glare, whatever seems to be their view on our parenting.
    Although this might be a setback, it's not for God, nor has any of these "issues" ever been for Him.  I do think that God gave us medicine so that we find out and treat the underlying problems.  Although I also know if He wanted to heal her right now He could.  The focus is still the same, get Kamiree to where Kamiree is meant to be.  But this does not mean that we won't give her the best education we can find for her, which I feel we have found for her at RMDS, and continue pushing her on a daily basis to speech therapy and any other kind of therapy we feel might help her.  She is a blessing.  I can't imagine life without our blessing.  Today was a hard day but we rejoice in the fact she is healthy and that anything they throw at us, God already knew and is there to comfort us.

May flowers!

      Wow, I cannot believe it's already May!  It also happens to be a long time since I wrote on this blog.  Meaning I am not a good blogger, and I have too many kids :) Today is apraxia awareness day and so I thought it would be fitting to give an update on our precious girl.  So much has happened this year with Kamiree.  She has been doing wonderful in school and improving in reading.  It's also hard to see the twins passing her up in reading, but she does not seem to notice, so for that I'm thankful. She will continue to the second grade and even more of a blessing is she will have the same teacher for the third year in a row!!!  We love her teacher and even more love what she has done for Kamiree in the way of education.
     We have decided to stay in Denver so that Kamiree can continue getting better and we can stop putting so much pressure on her to get better so we can go "home".  We realized we were doing that unintentionally so we decided to quit telling her we will go home when she can talk and just tell her that we are here because mommy and daddy like it here.  Chris has gotten a promotion as vice principal at the school he works at so honestly there are a lot of positives here.  It's also better to just not make plans either since we really don't know what will happen even in the next 6 months.  Kamiree's deaf school is currently building a new school here so she is excited to get to go to it.  Lucky for us, it is on this side of town so it doesn't change my hour drive in the morning to even longer!! 

This is Kamiree over Christmas in Wyoming.  The local paper took a picture of her :)

    Kamiree also talks ALL THE TIME!!!  Last night I was taking a bath and she walked in and sat and talked my ear off.  She is a very social person so it was about all the girl fights she got in but she had said sorry and ect....  Looking back I could of not imagined we would be here at this time.  I didn't think she was ever going to talk to me or we would have a relationship.  Instead, she is a "normal" girl that loves having friends, and actually has started to like her family :)  Not only that, but she fits in perfectly playing any kind of sport and loves basketball!  The opportunities she is allowed here are significant and I believe it is helping in her recovery.
   Kamiree gets another EEG in early June and then we see the neurologist at the end of the month.  In the last visit in February he said he wanted to take her off the lamictal but I think we are going to fight it.  I'm so scared that as soon as we take her off of it she will regress and everything we all have worked on for 22 months will be gone.  That would be devastating!  Since this syndrome is only supposed to last until puberty, I hope that we can just keep her on it until then. The thing with the neurologist is he has admitted that there isn't a lot of medical journals out there on her rare syndrome so everything they do is a guessing game.  I just wish it wasn't our daughter they are guessing with :(

Kamiree sitting on Uncle Ryan's lap before we headed to the AFC Championship!



     Everything is going well down here.  We go through stages of the kids wanting to move back to Wyoming immediately to them saying they love it here.  There are still lots of ups and downs with Kamiree.  When she gets gluten she still becomes a crazy girl which is good to know what sets her off.  She can still get very angry at us and then very happy.  Big mood swings for this little girl, but I have heard some of it is kind of normal for a 7 year old girl so we usually give her the benefit of the doubt.  We thank you all for your prayers, and please don't stop praying!  We have gotten to know a good group from our church and made good friends through other places so we don't feel so lonely anymore down here.  Thank you everyone!!