Let's try some Change

     Although it's been over a year since I have written on my blog, it doesn't mean that we haven't been having our challenges with Kamiree.  She has came so far, but we have had a pretty big set back that started in October.  Kamiree went from having a few "episodes" of being out of control every couple weeks to having at least one maybe two every week.  This scared me so I called the neurologist where he told me that we would do an EEG but it sounded like something outside his field.  We did the EEG and it came back she was having abnormal brain activity about 60% of the time even with her pills so the neurologist suggested we back down on the pills since really they aren't doing anything.  We did go down to four pills of lamictal a day, but the moodiness and the ability to control herself after a certain point is still happening.  Have I ever mentioned how I hate Landau-Kleffner Syndrome because of all the unknowns still?!?  It's so frustrating that there is no medical protocol for Syndrome yet, just a guess on everything!
     We have also been struggling with what school to have her at.  This Christmas we have decided to pull her from Rocky Mountain Deaf School and try to put her in the school with the rest of the kids.  The ultimate goal for us was to get Kamiree at a point where she could function in school and be at grade level and then move back to Wyoming.  Speech would be something that was important in this process and she thankfully has it!  She needed sign language to be the connection for her speech and now it is time to move on.  She is excited to start the new school and honestly it is not going to be easy.  She is behind in reading and writing still since she wasn't even talking at 5 so we know she will have to work hard.  If this happens to be a horrible move and we need to put her back in the deaf school we are not opposed to that.  We just thought we might as well see if she is ready for this next step or not and now seems to be the time to try. 
     Please continue to pray for our family as little decisions like this cause a lot of sleepless nights because we want the best for Kamiree, and all of our children for that matter.  She has worked so hard to get to this point so the last thing we want is regression of any type.  The overwhelming feeling of making sure we make the right decision for her is so heavy on our shoulders they feel like they are going to break.  It's times like this I am glad that we have God to give all our troubles/fears/anxiety's to. 

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!!

Another school year started

I can't believe we are already into November!  The summer was pretty uneventful as far as Kamiree goes.  She went to a sign language summer camp at her school the month of June, and got to spend most of July in Wyoming with my parents.  We are so blessed to have the family support we do.

This was us getting to go camping for a few days in the Big Horns :)

With that being said, this school year has already been a roller coaster.  Kamiree tested kind of low coming back in to the school, and I was a little worried the regression was due to Landau-Kleffner.  It seemed like some of the things she had got last year were forgotten.  We have had to fight insurance companies continuously since September 1st, and had to cancel an EEG that was scheduled in October.  We kind of have it figured out through December now I hope, and Kamiree will be able to get her scheduled EEG on November 11th.  The last EEG in July showed that Kamiree was having electric activity 60% of the time again, on medication, so it was heartbreaking.  We had gotten it down to 20% so this is a huge increase.  The neurologist has said that if this next EEG shows increased electric activity, we will take her off the medication and essentially give up on controlling it.  I'm very sad about this, and am praying that it is more controlled.  I'm so scared that if we do take her off the medication we might actually see a "real" seizure occur or something worse.  I haven't seen it yet, and I really don't want to watch her go through one.  

In the past two weeks Kamiree has began to read!!  I thought she had just memorized the book her school had her reading until I pulled out a book from the Abeka summer program and she read it!  The amount of tears that have been shed for Kamiree could probably fill up Boysen Reservoir, but these tears were happy :)  Here is her reading her first book.

And now we are here to the great news and update since I first started writing this post :)  Kamiree received her report card last week and has all A's and 2 B's.  The B's are in reading and math!  We went to the teacher conference and she said Kamiree has all of a sudden clicked on a lot of material, including reading (which we already noticed).  She is still at an end of kindergarten reading level, but SHE IS READING!!!  That's all I have to say :)  She is up to her age group in all other subjects and that is enough to be proud of.

Kamiree finally got her EEG yesterday and Children's just called me about her results, and she has improved!  Last time they said the abnormal activity was at 60% and this time it is at 27%.  Praise the Lord!  Maybe that is why she is improving so quickly in speech?  I don't know what the cause is, but she is improving!  We will continue her on this Lamictal and pray it continues to work.  There is no way we would go to the steroid medication with her so thankful this is working again :)

We always get sad this time of year as all the holiday's come around and we aren't in our "home" still.  Then I think, wow, it's only been 16 months and Kamiree is a whole new person.  It is still a sacrifice being here for the rest of the kids, and really for Kamiree.  She thinks we are moving back when she turns 8, so at her birthday she yelled "One More Year"!  I hope so, but won't go back until she is self sufficient and caught up on all levels.  The younger kids are really starting to ask when we are moving back to the red house.  As much as there is to do here, there is nothing like being around family.  Being here has really put in perspective what is important in life, and what we can do without.  I'm thankful that God uses situations to grow us and to rely on Him more.  Couldn't do it without Him!

Kamiree getting busy on the soccer field

Graduation

What an emotional day for our family.  Starting this school year we just wanted the best for Kamiree and to get her caught up in ASL.  She knew a few signs, but enough to make full ASL sentences.  I believe she knew 10% of the signs they tested her on in August 2012.  She was behind in a lot of ways and we knew that she would take kindergarten again.  We had talked to the teacher and it was obvious she was at least 2 years to 1 year behind in all subject areas because no one knew how to teach her the way she would understand.  Today we went to her kindergarten graduation!  I can't tell you the number of tears that came out of my eyes with admiration for our daughter.  She has worked so hard to catch up and is doing things no one (including me) knew she was capable of.

She is still behind in reading, but only 6 months behind now and was 2 years.  That was the biggest catch up for her, and I believe she will continue to get to her goal.

A class of 3 girls!  With all this one one one time I can't help but think that is what is making her blossom so much!  They were in a classroom with the 1st graders and Pre-K, so 1 teacher and 2 aides, you cannot beat that!

The director giving Kamiree her certificate of completion.  So proud of this girl!!!

Her Biggest fan club!  We will continue to do what we need to do for her as a family!

Thank you for all your support this year!

Support us as we walk for TEAM KAMIREE september 14th, 2013 in Denver.  Or come join us!

Landau Kleffner Syndrome

Today is Epilepsy Awareness Day.  One of Kamiree's diagnoses is Landau Kleffner Syndrome which is part of the epilepsy family.  I have never got in depth with it so I am putting LKS in simplified terms with the help of epilepsy.com so people can understand our daughter better.

1.  In the typical case, a child between 3 and 7 years of age experiences language problems, with or without seizures. The language disorder may start suddenly or slowly. It usually affects the child's understanding of spoken language the most, but it may affect both understanding speech and speaking ability, or it may affect speaking only.

Seizures are usually few and often occur during sleep. Simple partial seizures involving movement are most common, but tonic-clonic seizures can also occur.

2. Its symptoms are "acquired aphasia" (the loss of language abilities formerly present) and usually a seizure disorder. The children usually have generalized tonic-clonic and atypical absence seizures.  This was the hard part for us, because Kamiree lost ALL language she had learned up to the age of 3.  You don't realize how much they say at that time, but video's from that age show us Kamiree was talking and conversing before this syndrome got her. 

The EEG is often the key to the diagnosis. A normal EEG, especially one done when the child is awake, does not rule out this disorder. Sleep activates the epilepsy waves in these children, so sleep recordings are extremely important. Sometimes the abnormality is seen only during sleep.

The boundaries of the Landau-Kleffner syndrome are imprecise. Some children may first have a delay in language development followed by a loss of speech milestones. Landau-Kleffner syndrome (or a variant of it) may also occur in some children in whom language function never develops, or in others whose language skills move backward but who very seldom have epilepsy waves on the EEG. The exact relationship between the epilepsy waves on the EEG and the language disorder is imprecise, although in some cases the epilepsy activity may contribute to the language problems.

3. After age 10, only 20% of patients still have seizures. The clinical course of the disorder fluctuates and it occasionally disappears on its own.

Some children are left with permanent language difficulties. Most commonly, these are children in whom medical or surgical therapy does not eliminate the epileptic patterns on the EEG.

Kamiree is having seizures 30% of the time, but we are unaware of them.  Only through an overnight EEG did we realize she was having these.  Medication can help a little, but does not stop them completely.  We are praying that she will not have permanent language difficulties and that the speech therapy we are getting her will help her when she comes out of this.  

Thank you for all the support with Kamiree!  We are blessed to have you all in our lives and praying for us!  

References

http://www.epilepsy.com/epilepsy/epilepsy_landaukleffner