stach contest for hungtington's disease

my dear friend maggie's family has a history of Huntington's disease. maggie has a chance of having the disease herself. for the last couple years her family has done a fundraiser to raise money and awareness for this disease! it is time to find a cure!!! they have a stach contest every year. they guys have be be clean shaved feb 14th and they have about 4 weeks to grow the best stach they can. they then have to dress to match the stach . mark and i went for the american chopper look. mark can grow some MAD facial hair so we had fun with it! he ended up winning the largest stach :) it was a fun night with friends raising money for a good cause. with the sponsors all the guys got they ended up raising about $4000!

we are already looking forward to next year!

we love you maggie and pray everyday that this disease will not touch you!

perfect

today i had an early start....i am NOT a morning person but today it did not matter that my alarm went off at 530am...i was awake anyway :) i spent a lot of the night awake thinking and praying about kinley's day today. i know i should not doubt that God would work today out perfectly, but i had some moments of worry. would we "click" with our new therapist, would kinley be responsive to therapy, would it work...would kinley talk..... but as i drove to therapy this morning i felt excited and peaceful.

we waited in the waiting room and mary lou our therapist walked out i just knew it was okay. during the next hour we had a GREAT time. mary lou was awesome! she was kind, authentic, FULL of knowledge and a PERFECT FIT :)

i left with A LOT of information and "homework" for kinley and our family...and it was WONDERFUL! as a mother it felt amazing to be empowered with things i can "DO" to help kinley. i am excited about the tools and plan mary lou explained. she warned me that therapy will kind of go in 12 sessions. she told me that i might not see a lot of progress in the first 12 weeks, but she said she is confident that by the end of the 2nd 12 weeks that i will start to really notice some change. i know 6 months seems like a long time to see some little changes, but to hear that we will see something is encouraging. i had a "moment" today with mary lou and with tears had a mommy moment asking if she thought kinley would ever talk. i LOVED her response...she looked at me and just smiled and said "brooke, kinley is already talking...listen to her...we just don't understand what she is saying :) " this statement is so true! kinley may not be able to articulate her words well but boy that sweet girl of ours can communicate in a way all of her own :) kinley has the best personality and it shines !! i love this girl!

it has been another amazing day showing us once again God has the perfect plan for us!

thank you all for your prayers and support!!! i can't wait to video kinley post some videos of her progress!!

excited and nervous :)

so tomorrow is kinley's first therapy session with the specialist at childrens. this speech language pathologist came HIGHLY recommended from the head of childrens speech department as the best therapist for apraxia. it has been such an answer to prayer to be starting this journey tomorrow. i am both excited and nervous to start. i can't wait to get more tools to help kinley, but i am nervous of how it will go. our appointment is at 8 am in littleton ( about 40 min away). i am so thankful for one of my mom's friends, jane, who has GRACIOUSLY offered to come to my house at 715 am to help get kya ready and bring her to school, since me and kinley will be leaving then to drive to her therapy. thank you jane ! it has been amazing having people totally selflessly offering to help us out ! for now we are scheduled every other tues at 8 am and every other thurs at 1100. i have already had NUMEROUS offers to pick kya up from school those thurs...once again THANK YOU ! every hurdle i seem faced with, God just knocks down as almost to say "there you go, i will take care of that :)". it has been amazing !

we made it to church this weekend..for some reason we have not been able to bring ourselves to go the last couple weeks. it is so crazy how the place where your soul gets nourished and taken care of.... we avoided. i think it was due to the fear of emotions. mark and i both said how we were doing so well to "hold it together" that we didn't want to fall apart at church. now that is actually wrote and read this....it is so obviously crazy. that is EXACTLY where we should have RUN to ! who cares if people see your tears streaming down during the service..or how you walked into the service with your makeup done nicely but when i leave there is hardly a trace of any ! this weekend was just that...mark and i think made it about 30 seconds into worship before the tears started flowing. it was not all sad tears, but tears showing our emotional humble faith that God is there...taking care of us. it was almost cleansing to our souls it felt amazing, it was just what our hearts, souls and minds needed. i walked out of church and all i felt was PEACE! i hope that we don't make that mistake again and worry more about showing our "humanness" then spending time with God.

i will update you all tomorrow after our therapy session and let you know how it went. prayers that we "click" with our therapist would be awesome! we will be spending a lot of time with her and it is my prayer that she would too feel like we are a good fit. thank you all again for your notes, prayers, emails etc. it is amazing to be so loved and supported!

a great afternoon!

this afternoon it was so nice to just hang out with my girls. we laughed, we sang. we blew bubbles, we had "girls club" in the top club house of our playset, we read books...we just had fun! it felt so good to just be outside and soak in some "normal" time with my girls. life has been kind of crazy the last couple weeks, so taking the afternoon to just have fun with them, was a gift to my soul.

i felt like i was smiling all afternoon...it is amazing to me how even though kinley can not say alot of words...she finds her own way to communicate. God blessed her with this AMAZING personality and she is so EXPRESSIVE in all she does. she also is loving using the sign language we have been learning. i just feel every hour i see God blessing our lives through this current situation.

a favorite moment today happened when we were sitting on on the grass laughing at wilson trying to eat the bubbles we were blowing and kya said " mommy did you just hear kinley...she just said ilon op (wilson pop)! see mom jesus hears our prayers and he is already answering them...he is so awesome huh". i got tears in my eyes..."yes kya he is awesome! " but also what is awesome is how my girls are getting to live in the middle of his blessings right now...it makes all this struggle worth it!

wow!

amazing! thank you LORD! we just opened the mail a little while ago and received the letter from the scottish rite foundation. we had applied to this foundation ( which is funded by the shriner hospital) for a scholarship for kinley. we wrote a letter and included a picture asking them to please join us in helping kinley learn to speak! it was yet another answer to prayer that we were even able to be considered this month due to that the registration deadline was before we had even met with childrens. but we wrote a letter and turned it in last thurs praying that this could be a way to help us! i got a phone call from the coordinator that day that said she opened our application that we had dropped off and kinley's picture fell out...she said "i just could not say no to that face" and she pushed us through to the board meeting that was the next day rather then having to wait till the next month's meeting! another answered prayer!

we have been in constant prayer since then...praying that kinley's story touched the board members hearts. i was not expecting to hear back so soon and the letter even had our address WRONG 19010 instead of 19101...and it was delivered no problems. thank you God :) mark and i said a quick prayer and we opened the letter...the tears started flowing....we got an amazing scholarship to aid with kinley's therapy. they are willing to cover 1 time week therapy through childrens and our part will only by $300 a month!! they are covering the additional $1100 a month for the next 2 years!! i could not stop crying tears of joy that ONCE AGAIN GOD IS PROVIDING!!! after talking to kinley's current speech therapist from school..we are sure she will need some additional speech therapy in order to learn to talk. most specialists recommend 3 times a week. we are sooo thankful to have 1 time a week covered at a much reduced cost for us. we are still praying that God opens doors for some other private therapy that kinley can do in addition. we have faith God too has a plan for this...

THANK YOU for your prayers! they are WORKING!

God is in control

wow~what a week! i kind of don't know where to start...my heart has been in darkest depths i have ever been but also has been at highest heights. we went to childrens last tues for kinley's formal evaluation for her speech. it was confirmed that kinley does have moderate to severe developmental apraxia. there is a 25-30% chance she will never be able to talk. they did test her receptive language and she was at the level of a 4 year old. so we have a very smart little girl on our hands that has ALL the words her sweet brain...but just does not have the motor planning to say those words. it was heartbreaking to hear.....

walking out of the evaluation i was trying to hold it all in. i knew if i let myself go to the place that this is all really happening i would not be able to drive. i had about 10 min to calm down and get to kya's parent teacher conference. by the grace of God i was able to walk into kya's conference and focus on her. i had to be a mom for kya too...i had to be present and excited for all the things God is doing in kya's life. i made it through and listened as kya's teacher sung kya's praises. kya is an amazing 5 year old...has a heart of gold and is such a bright little girl! it was so crazy feeling to proud of kya and at the same time feeling so broken for kinley.

by the time i got home all that emotion came CRASHING down. i have never in my life experienced a panic attack but i knew that is what was happening. all these doubts about my ability to be strong enough to be the mother kinley needed, questions about how we were going to get through this, if kinley was EVER going to actually be able to talk, questioning if i had done something to deserve this or cause this, questions of why God did this to kinley...and so much more filled my mind and i just could not catch my breath. praise the lord. mark, my mom and my dad all were at my house within an hour to support us through this. i was able to take some medicine and sleep for a couple hrs. i woke up knowing that it was not by my strength alone we were going to get through this...it was OBVIOUS i was weak...and that only through the strength of God could we make it thought this journey.

by the next day the pressure in my chest had lifted and i just had this peace that i knew only could come from God. my dear daughter kya had the most profound and mature things to say while we had breakfast. she just looked me in the eye and said "mommy, God is going to take care of us. we all have things that make us different...i have a birthmark, and i know it makes me special. kinley might not be able to talk...but that makes her special too. God loves us JUST AS WE ARE right mom"?? wow...it soon became so clear that this indeed was a blessing...that God chose kinley to be a light to others through her struggle. i was amazed that God used my sweet 5 year old girl to change my entire outlook on apraxia.

we prayed that night as a family for God to be our guide. we prayed that God would have to open doors wide for us so we would follow the path he had planned for kinley. on weds we had received a lot of information about therapy for apraxia and received numbers of $350 a session for speech that was not going to be covered by our insurance. we knew that God was going to have to provide the means for that. $1400 was not a amount we knew we could cover without God's great provision.

thurs morning i woke up and spent some time with the Lord again praying for doors to SWING WIDE OPEN for us. about 20 min later i got a phone call from my mom that a couple from our church, whom i have never met, came into my dad's office with a envelope with kinley's name on it...inside was $1000 towards kinley's first therapy sessions. i was amazed seeing God's provision and it was almost as him saying to me " brooke i am in control...trust me". throughout that day it was phone call after phone call of answers to prayers.

we were told of an amazing speech pathologist that specializes in apraxia but were told she had a wait list that we would have to go on. i got a phone call about 5 min later from the coordinator that she spoke with this therapist and she was going to hold a spot for kinley in her schedule ! yet another answer to prayer. and those are just some of them...it was an amazing day seeing answered prayer after answered prayer.

i know this is going to be a long hard road. but i TRULY trust God is going to carry kinley through this. i believe he is going to give her words that go along with that amazing personality he blessed her with. i know he must have a VERY SPECIAL plan for our sweet girl! i feel blessed to be her mom and to get a first had view of all the amazing things he is going to do in her life!

thank you all for your prayers, notes, calls, texts, emails etc supporting us through this ! it means more then you will ever know!

what we have been up to....

so i am aware it has been a month since i have blogged. i am hoping to have a lot more information next tues, but recently we have found out that kinley most likely has developmental apraxia. it is a neurological issue where they have all the words in there heads but do not have the motor planning to actually get the words formed. we have spent A LOT of time, praying, educating ourselves, talking to insurance companies, therapists, and just processing what this means for us as a family. there is a chance kinley may never be able to verbally communicate, but most kids with INTENSIVE therapy can get to a level of communication and some even get to a point that most would never know the person even had apraxia. at this time we have no idea the severity of kinley's apraxia. we go into children's for our formal evaluation and will hopefully get a lot more clarity and information. kinley also has sensory integration disorder which can complicate her apraxia. please keep kinley and our family in your prayers. we trust God has a plan for our sweet girl! she brings so much joy to our lives! thank you for all your care and concern for our family during this process!