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

Joy comes in the Morning

After waiting patiently (okay I know that's a stretch) we got to go see Kamiree's new neurologist today to get test results from her EEG on January 22nd.  I always hate these appointments because if you go in with optimism you usually leave crying, and if you go in with dread you usually leave crying.  So what's that leave us??  Lots of crying.  It's always at these appointments you again realize that you don't have a "normal" kid.  I know some of you are already thinking...there is no such this as normal...but I disagree.  If I had a normal kid we wouldn't go to the Children's hospital every 2 months just to hang out and see some doctors.  I know there is worse, I know Kamiree is not on the worse spectrum in many minds, but again you don't live with her or have to deal with her mood swings and problems everyday like I do.
We found out Kamiree is having spikes still 20-30% of the time, with most of them happening at night. This is good news, because she was at 50% before we tried any drugs.  The spikes did go up a little from the last time, but not enough to warrant change.  It was explained to us that basically this medication is covering up the problem not stopping the spikes.  There is no medication that can stop the spikes.  Kamiree has not had a huge regression in the past 6 months, which is HUGE, but we could be coming upon one again soon.  You never know with this syndrome, so for now we laugh and TALK with her and pray to God she doesn't go back to where she was.
Her neurologist also showed us her MRI from this past summer and showed us 2 white spots that are barely visible on her brain.  He said this might be possibly from a brain infection and might be the tip of the iceberg for all her "problems."  This was the first time anybody has told us that this might be the root of everything.  His recommendation is to have another MRI this summer and see if the spots are still visible and we will know something might have happened.  He said the brain infection and hearing loss then may be related!  Another step forward to finding what's going on, but another guess as well.
He also ordered a genetic test.  I have always wanted this just to see if this syndrome might affect the other kids.  I don't want another child like this, saying this does not mean I don't love Kamiree.  I'm saying it would be so incredibly hard, as if it's not now, but in a way that I wouldn't be able to explain.  There is only so much I can take, and I want to know what our future may hold basically.  Even though honestly, if it is my DNA's fault I'm going to feel guilty.  I have always taken Kamiree's diagnosis as my fault as a mother and even though I deep down know that I am not GOD and cannot control what my child was born with or developed later...you can't help but think what you could have done differently.  Especially if it really was a brain infection...how did I miss that?!?!  I just have guilt and hurt for my daughter.

This being said, he recommended every therapy we can find (which we have been doing), and to continue on this new medication for at least 4 more months.  To give her the best chance of as much of a "normal" life as we can give her.  Hearing this though really did bring confirmation that we are in the right place.  I know I say that often, but for some reason it never gets old to hear or find out.  I don't love Denver, but I love what it is doing for our daughter.  We have found people to love us, pray for us, comfort us, and best of all be our "family" down here.  My MOPS group has changed my life.  I no longer sit inside my house sulking for this life I have been given.  God is comforting me through these people and showing me He cares.  I do still want to scream why!? and I still don't understand why!? but God does and really that's all that matters.

Progress

We had such a great Christmas break!  It's amazing how fast 2 weeks goes when you are on vacation :) As great as it was...it was a struggle for Kamiree.  We went to Thermopolis for a lot of it and Kamiree just struggled with not having a routine.  We love not having a schedule, sleeping in, staying up late...but Kamiree did not.  She had a lot of breakdowns and was always ready for a fight.  Chris and I had decided she was doing so good (before all the breakdowns) that we let her have a little gluten.  We have actually never got her tested for gluten intolerance we just noticed that she seemed to act out when she had it so we made the decision to have her have a gluten free died.  Let me tell you it was horrible!  Within an hour is when she went crazy.  Bad plan for us and we immediately went back to no gluten but she then was sneaking it and had no control left.  After the first 5 days of being in Wyoming she had totally lost her mind and we had to do everything she wanted or she went crazy.  Our lives were back to what they were 6 months ago...maybe even worse!
We did do speech almost every night with her, and she did change a major sentence she has been having a hard time with.  She often says "Please help you" and now she can say "Please help me." :)  It's the little things right?!?

Kamiree with the twins Teagan and Taetum

We have been back in Colorado for 2 weeks now and things have settled down a lot.  Routine is best for Kamiree and boy do we have one this semester.  She has 3 days of speech, 1 day of horse therapeutic riding, and 1 day of gymnastics.  The busier we keep her though, the more progress we see in her.  She only struggles with speech because it is hard for her, but the other things she loves.  I am going to try to get her in to get some OT soon and maybe meet with a behaviorist that can help us with some of the issues we are having.  One of the biggest in the last 2 months is being scared.  It's not a normal child being scared, but terrified to go to the bathroom alone, or really pretty much anywhere alone.  She has even been grabbing Tenley (who is almost 2 ) to protect her.  She won't sleep in her own bed.  And by that I mean she won't sleep!  Chris and I took turns and sat in there for 3 hours and she actually goes crazy where she is screaming and keeping the whole house up.  It's not a normal scream either, a high pitched making people in the neighborhood aware kind of scream.  So we now have a 6 year old that goes to sleep in our bed at 8:30 and has become tolerable for the next day because she has sleep!  I need help at helping her!
BUT...all this being said :)  We got her report card in the mail yesterday.  Colorado does this grading system from 1 to 4.  1 being not progressing as fast as we would like basically, 2 almost proficient, 3 proficient, 4 advanced.   The first quarter she had all 1's and 2's.  I will tell you as a parent of Kamiree, I was excited she had any 2's at this time.  I have this fear that she will never be able to catch up to her grade level because she has so much going against her.  This quarter she had no 1's (Yay!!) and some 3's :)  That means our baby girl is proficient in her age for some things!!  Math concepts is one of them and she really struggled with them last quarter.  All her IEP goals had progress on them and no regression!  For someone with Landau-Kleffner Syndrome this is rare and exciting!  I don't want to put pressure on her to be "normal" because she's not, I just want her to do her best and now I can see she can excel and catch up.  The most exciting part for me is that in language concepts she is now proficient with ASL.  That means when someone signs to my daughter she understands them 100 percent of the time and can sign back!  That is amazing to me and another reason why Chris and I need to learn sign and am signed up for a class starting in 2 weeks.
I'm sorry this was a long one, but so much has happened it seems :)  I have to just share that I have been begging God to show himself to me these past 3 months because I have struggled with Kamiree's problems, our financial situation, and everything that seems to keep going "wrong" in our lives....and He did show me Him in so many ways.  It's not just the huge amounts of money (all relative) that came in so we could give our children a Christmas and buy tires for our car, but knowing He has us in the right place.  I need proof, I need to get over that, but God knows what I need and showed me He loves us and cares for us and He is watching over us everyday, every minute, every second, He is there.  I needed to know that and feel that this Christmas break, and He understood that.
If you are praying for us please specifically pray for Kamiree's EEG that happens on Tuesday to Wednesday please.  She gets to do an ambulatory one (which means she gets to come home after they put the electrodes on) which is much better then staying in the hospital!  This is to see how the new medication is doing with the electrical activity!  Thanks everybody!