Event in Life

Sometimes in life there are moments that seem to change the direction of our lives. This year alone we have had a couple.  In December we found out Kamiree had apraxia of speech and we knew we had to go somewhere to get her some help so that has been our focus.  Today was another one of those moments.  We found out our daughter is having seizures, and not just a few, numerous.
Yesterday when we checked in to the Children's Hospital we were told that if they didn't see any seizure activity we would only be in a night.  So this morning when a lady came in at 9 am to start taking Kamiree's electrodes off we thought all was good.  I put her in the bath, and all you would see is smiles.  My mom came in to the bathroom to let me know that the doctor was there so I stepped out happy as can be.  He looked at me and told me that Kamiree's EEG is abnormal.  I just kept staring at him thinking that he accidentally said the wrong thing...waiting for him to fix it.  He did not but continued by telling me that she is having numerous or frequent seizures in the left lobe which houses her language and comprehension.  It could be one of 2 things, either the seizures and apraxia of speech are correlating or they are working independently in which case she has another thing to add to her long list of not being a "normal" child in today's world.  Phew...okay so I was acting like all was good, hoping he would just go so I could just cry, and he did go...and I did cry.
We were checked out with the instructions to call next week and talk to our neurologist to set up a repeat MRI, to see the damage in there, and then they will figure out a game plan for our sweet child Kamiree who is looking up a mountain with no top.  Even though she doesn't know it, I am seeing it for her.
So even though this move to Denver has been stressful, taking a step back, God planned it.  Now we will be in our "hometown" while they figure out what drugs work for Kamiree.  I don't want to smile right now, just cry...but I know my heavenly Father has a plan, and this is it.  He loves Kamiree.  And for right now, that's what I'm holding on to.

Next chapter is fast approaching!

So it's July!  And while that is not a big deal to some people, to me it means sadness and happiness all in one.  As we pack of to head to Denver at the end of this month (well Chris at least, the rest of us August 12th), I can't help but shed some tears.  The emotional thought of leaving my family who has been so much help is almost excruciating to me.  I have relied on my mom to take Kamiree at least once a week for a break for both of us.  It has been a blessing to have that break and to be able to just breathe.  All the kids get a "break" from me quite often and it's been nice for all of us!  Again, the reason it is hard to leave.  We have slowly been packing up our house realizing how much junk we have :)  Maybe everybody should move every 5 years so they can cleanse their houses haha!  Anyways, this summer has been a good one for Kamiree for the most part!  Her speech has really come along!  She is trying to say 3 word sentences quite a bit now!  She still has fits, and to be honest we have been pretty lax on the gluten free diet this summer.  It is so hard, but really it's no excuse.  I can't wait to see what 5 days of speech will do for her!  She did get put on SSI disability so I signed her up with a speech therapist that does hippotherapy.  I can't wait for her to have one day a week on a horse still learning but not knowing it necessarily :)  As hard as this is, I know that at the end we will be happy with whatever outcome it might be.  I know she will improve, so that's what matters.  I want her to have a normal life and be able to be independent.  This will take lots of planning on our part to meet that goal.  Thank you for everybody that has supported us thus far.  This is a journey like no other for us!

April

Got to go to the apraxia workshop that I signed up for in February.  Thanks to the fundraising that is done with the apraxia walk that was done in Denver, I and many other people were able to attend for free.  It was an Apraxia 101, which honestly is the first time I have sat down and found out a lot of answers to my many questions.  I feel so blessed to be able to say that we have found the right SLP because she fit all the criteria that we were told that a good SLP for apraxia would have.  That is a "Good one God" there because it was totally ironic how we got Brianne Lay in the first place.  I am not sure if I posted before but I will again :)  When we got back from Boys Town, I emailed many SLP's in this are and Denver and she was the one and only to write us back.  She is amazing and Kamiree loves her...all big pluses!  I also learned that Practice language is all we should be doing all the time.  I mean making her talk instead of getting it when she points or we "understand" what she is saying...she needs to say it!  

I was blessed this trip because my mom went with me.  I was able to show her the school Kamiree is going to attend as well as have her go to 2 speech therapy sessions with Kamiree and I.  Kamiree did so well, this gluten free stuff seems to be working, and was calm and worked hard the whole 30 minutes.  It was such a transformation from just 2 months ago.  I was able to sign Kaden up for his school this time, and he will go with us May 8th to have his interview.  It seems to be falling more and more into place each time.  I know I am saying blessing a lot but I do feel blessed at this point.

It's been awhile....

I'm sorry that we have not updated in so long! I feel like our lives are spinning and we have no control of it right now. Chris took Kamiree down to Denver the week of Feb 23rd and she did awesome! She participated at all her therapies and had a good attitude for most the time :) We are now working on putting two words together and helping her put the two syllables that make up the word together so it's smooth. For instance, instead of buh nee, we are getting her to say it all together. I'm proud of how she has improved, but I do know she could be so much farther if we had her in an intensive speech therapy every week. This is the other reason we are going spinning....trying to figure out moving to Denver. Chris just did a teacher job fair down in Colorado trying to get a job. I pray that he will get one because 1. He loves teaching 2. He has to have a job for us to move 3. We need to move to Colorado. It's intimidating to have 600 other teachers looking for jobs in one building. Through this all we know that God is in control and we are relying on Him to get through all this. We have just recently changed our diet. We are now trying gluten free. So far this is day 3 and I have noticed a difference in Kamiree. She seems to be saying more words and a lot calmer. I don't know if I'm just looking for it, so we will continue and see how it goes. It's really good for our family because we are eating more vegetables and learning about them :) So if you need something to pray for it would be that Chris gets a job offer down in Denver! Kamiree needs this.

Behavioral Issues

If there is one thing I still cannot totally understand about apraxia, it's the behavioral issues that seem to go with it. I understand that Kamiree is frustrated because she is not able to speak even though the words are in her head, but I don't understand the constant hitting and kicking. I have such a hard time not going crazy when Kamiree slaps me across the face. She just did this on Valentine's night at the church. She was frustrated because she wanted to stay with me instead of going into the nursery. I understood this, but there was no way to explain I would be back after I was done eating...so started the hitting and kicking. I need help on learning how to calm her down quickly or slow down her temper. We do discipline her accordingly, but there are times I know she is frustrated more from lack of speech then just being bad to be bad. It is so hard to take a slap on the face multiple times and not get angry...I need prayer please! Also, Chris is heading to Denver next week with Kamiree so we will get to see how far she has come.

Kaufman Childrens's Center?????

Another week of speech over for Miss Kamiree. On Tuesday she got up to 21 cards right and I'm so excited for her! Yes, I bribe her to do the cards, and yes, I don't really care what it takes to make Kamiree talk as of right now. What is two small scoops of ice cream or one cookie to have her say 50 plus cards to me??? I will do whatever period.

So I was on the apraxia site on Facebook, which honestly has kept me positive throughout all these changes, and I saw that someone was talking about the Kaufman Children's center in detroit which has a summer program that lasts 3 weeks and is very intensive. It will cost us about $3600.00 but everybody that has taken their apraxia child there said it has changed their lives right away. It's just money right? To have a daughter that can speak would be worth every penny. I know that God will provide this and I am going to start praying more. They even will help Chris and I learn how to teach Kamiree as well as curb her frustrated behavior. It sounds so great! Kamiree already does the Kaufman cards for speech, so this is a whole program for apraxic children. Anyways, this is the update :) I think we will take one more week off of Denver, so I can make sure she knows all these old cards and then we will head down and see how Kamiree has improved. God is good, and I am feeling so positive right now!!

New Beginnings

This week we have stayed home trying this new schedule for Kamiree. It has gone...well I don't know. Kamiree hates change so she was sick on Tuesday and that threw off the whole week. She did not want to go to school the rest of the week so we had behavioral issues. The only thing she really wanted to do was keep going to speech with one of her new SLP's Bobbie. It has been hard for me not to sit in on speech and see what is going on, so I really don't know how she did this week. What I do know is that she did all her Kauffman cards for at least 3 days and she is up to 7 words with NO HELP! It is weird cards like Tuba that she remembers :) We are at least going to take this next week off from Denver. Really she needs to know at least her first 25 cards until we can go to the next series so hopefully we can get them down this next week. With apraxia, repetition is so important! That is why she knows the name of all her siblings, a lot of cousin, and grandparents. We are always talking about them or to them! :) We did get some more of the results from Omaha yesterday and it brought fresh tears. Just remembering that she is special needs and needs a lot of help. I guess it's human nature to think that she is all good, but then looking at those and hearing what other people label her as makes feelings arise you don't know you have. Anyways, this is the update for the week...if you are praying for us just please pray for dealing with the behavioral issues better and that she works hard and uses her words.