Update on EEG

I got a phone call from Kyle's Neurologist the other night. He explained a little bit what the results of Kyle's EEG were - we have an appt in December so I am sure we will discuss it more then. The findings of the EEG were abnormal - which in my book isn't so bad b/c we have been told it will always be abnormal - b/c he will be compared to other kids his age and his brian developed 1/2 out of the womb which just plain makes things different. His connections and electrical activity is expected to be different. So that didn't sound so bad. The main finding we discussed was that his background activity was slow and spread out. well to a mom that sounds pretty rough - but Dr. Clark assured me that this statement is referring to the electrical activity in the brain... not kyle's cognitive ability. Well - so does generally slow and spread out electrical activity affect kyle's cognitive ability? Theoretically the answer is yes - it does and it will. the clinical answer is "we shall see". and as of right now - kyle's brain looks immature and kyle looks immature - so that matches. but kyle is progressing in learning and concepts - and so there is not a reason to think (even according to the neurologist!) that this would stop. So I obviously felt much better after speaking to him. Slow is just not the word you want to work with when they are talking about your child's brain!

So here is my take - I don't like the punches that feel like they come out of no where. They are hard to swallow and feel like they knock me back to standing in the NICU. that sickening feeling of not knowing. but here is how I will look at it. Kyle has to fight harder and I will help him. I do believe the Lord is healing him. He will be able to sort shapes and do puzzles - it might just take more work. So work we will do! I will use this as a reminder that Kyle needs to work hard and that means me working hard! I guess as moms we all need that reminder sometimes. Thanks for praying - I could not have a better group of friends that keep me focused during moments of stumbling. I love you all!

EEG Results

I was having a perfectly normal day. Kyle had picture day at school today. I got a call about Kyle's EEG results and they were not what I expected at all. So in my head I start scrambling for a verse that makes it make sense. A scripture that makes it okay or that reminds me that this is not about me or about Kyle. ... ... can't think of one.

I'll keep trying.

obviously I didn't the results we wanted. didn't get the results that I was expecting.

on a positive note - a good reminder to stop slacking on therapy. It is so easy to listen to everyone comment on how "normal" he seems and how their child did that same thing and they are "normal". and I fight all of those thoughts but somehow they do creep in and make me feel okay if I miss one infant massage or one 30 min session or one time wearing ankle weights. Kyle is doing so much more then anyone ever thought he would. I believe he is being healed and is so amazing. He deserves to be fought for!

I should know more details from the doctor in a few days and I'll update more then.

October Update

Halloween was too fun. John was out of town and uncle kevin saved the day. Kyle made it to about 7 houses and then uncle kevin took jadon and jack around to the REST OF THE NEIGHBORHOOD! they had a ball! then they spent the rest of the night scaring me with all their masks!

Kyle was a super hero - he learned to say Hero! Jack was a pirate and if you ask him he was a "scary pirate". Jadon is the greatest story..... he wanted to make up his own costume this year. so he saved up his points from stickers (he gets stickers on his chart for his responsibilities and stuff) and he got to buy a mask at walgreens.... it was a creepy michael jackson mask but he thought it was a zombie! so he loved it. he wanted to be something scary this year and dad said yes.... so anyway - I have always been a little judgemental to the kids that come to our door and are half way dressed up and just have a mask and some blood running down the neck... they look like they just threw it on to get some candy...... ????..... well jadon very carefully decorated his mask with black and red paint - to look scary and bloody. then he turned some sweat pants inside out to make them black and then the took an old indian shirt he made from his kindergarten thanksgiving day feast and turned it inside out and backwards and put paint on it too. then he wore his mask... he worked so hard and was so creative and detailed. and when I saw how proud he was of what he had made I felt so bad for judging all those sweet little guys who were probably just being creative too! so i learned my lesson this year. all 3 boys looked adorable! when I get my video camera fixed I will post a video and catch up!

kyle is doing so well these last couple of weeks. everyday is a new word or 2. we are up to 2 word sentences and naming objects. "daddy's keys. daddy's room. mommy's car. mommy's lap. " he is learning new things everyday. We are working hard on singing and teaching kyle to say no and making choices. we are still working on leg weights lots and and parallel movements. Kyle has his EEG friday to check for any seizure activity and maturity of brain wave patterns. He qualified (after some long fighting) for another round of RSV shots this year and we have all officially been vaccinated with H1N1!

some pics...

Jack being a "scary" pirate!

Jack enjoying life and ice cream.

Kyle listening to his headphones.

Jadon with his tie - on picture day at school.

Jadon had crazy sock day at school and we must have really talked it up at home b/c Kyle found them after jadon got home, put them on, and ran around saying "crazy sock". (in his own little version of talking!)

Kyle... a sensory kid?

You know on one hand your logic tells you that 23 weekers are not born and survive and flourish without some little problem somewhere - as if they didn't have enough in the beginning but some lasting something - medically speaking - I guess. Then your faith in your heavenly father tells you that He heals. and i REALLY TURLY know that he does. I also really do know that wow - my father's definition of love and healing is so above mine. I cannot even come close to understanding it - only accepting and trusting in it. Then there is human love that drives us to not want to believe anything could be wrong with such a sweet child that we love. Then of all the people that know and love kyle and work with him - we all have our different life experiences that lead us down different roads and give us our own opinions on each of these above ideas.

So.... as mom and dad to a kiddo that may or may not have special needs... we get to decide which way to lean. which way to go. medical treatment or no. therapy for "that" or not. does he just like ice or is he sensory seeking. did he play in his poop during sleep b/c he is sensory seeking or b/c he is almost 2. Is he staring b/c he is having seizures or does he stare into space for the same reason i stare off into space every now and then. and I'm sure anyone reading this has an opinion on each of these too.

All i'm typing really is my thoughts on details of parenting - well my parenting really. and I know this happens everywhere - mom's that think all kids need a paci. mom's that think no kid needs a paci. all the lovely opinions we hear on private vs public vs home schooling. For some reason i seem to be more sensitive to all the opinions about kyle. I don't actually care what anyone things of my decisions; I think i just am feeling the weight of the result of my decision.

I am thankful that God gave kyle to me and I get to do what I feel like is best for him. Kyle's birth has changed our lives so much more than i even expected but in such a different way than i expected.

So Kyle is starting to show signs that I think might be some real sensory seeking. I am not sure what this means or what the next steps are to take.

He is adorable and doing so well in his learning. He loves mothers day out and is really learning there. He is also about to be 2 and it mostly shows in his temper or distaste for not getting is way!

We have an EEG coming up and meeting with his Neurologist soon after. I'll try to do better about keeping posted.

First Days of School - better late than never?!

Jadon headed down a big kid hallway!

Dad walking jadon to school!

Jack was a little nervous!

Kyle making his way into the classroom and...

... and if you can look really hard you can see him, straight to the buckle of the seat. Kyle loves buckles!

...another first - Kyle's first taste of ketchup - uhh.... he liked it!

Family Vacation!

Well - the Sherrill's officially went on their first annual "almost" family vacation. I say almost b/c poor baby kyle got left at home! After a summer of travel for john and mommy doing constant therapy with kyle - the two older boys were ready! So we headed out to our long awaited first "almost" family vacation.

We went to Fiesta TX and SeaWorld where jack's only goal was to ask Shamu if "he was a boy or girl". that is what he wanted to do! Jadon's only goal was to check into a hotel like zack and cody from "suite life" as it is called around our house.

I planned and planned - mapped out both parks for all the rides that the boys could go on (height requirements), places to eat that had kid food and were air conditioned, planned what shows to see when - what hotel had free breakfast. and then - how to keep up with a 6 year old and 3 year old at the park. so they were dressed alike, had on arm bands with our cell phone number on them, and they wore whistles to blow if they could not see us. thankfully we did not have to use any of them - came close once.

and turns out... Jadon and Jack are roller coaster junkies!!! We got lucky when we went into the park we had a worker that did the height measurements and jack was really 41.5" but she passed him for 42". so we got to ride more than we thought! and they had a blast! we road the Road Runner Express 5 times!

all in all - we had a blast! absolute blast!

Jadon again....

so daily jadon has these hysterical stories that come out of him. he is such an amazing little guy! and by the way - he wants to wear a white shirt and black tie to the first day of 1st grade! ... along with his mohawk!

Here jadon is getting his hair cut. So I found this cut online b/c jaodn is not liking doing his hair - so we were looking for something low maintenance. now the first pic is him thinking "OH WOW" he wanted to know if he was going to be bald! the second one is how HE wanted to wear it out of the mall! can't tell you how many looks we got! he was so proud! i'll post a pic of how it normally looks - when it lays down like he will normally wear it - he looks so cute!

so then we find out that some school districts don't allow mohawks - or lip gloss(not that this will be a problem for us - I was just surprised!) I have so much to learn about regular school!!!

so anyway on to jadon's adorable story.... i know... you were thinking... there is more than the black tie to school and mohawk haircut!

yes -

So the boys had just gone to bed -late- because we had a huge pirate show that night! that's a whole other post. I heard Jadon in his room and it sounded like he was rapping!!! so I moved in closer to get a good listen - and I could not tell if he was rapping, singing, it kind of sounded like he was praying... I heard "please, please..." and about that time he comes out of his room. I jumped back to the couch as acted normal. He wanted some lotion or something... So I asked him what he was doing. He said he was prayig and just confessing to god that he was everywhere and could do anything. So because of that jadon said he knew that god knew about the time Santa came to visit. (when kyle was in the hospital - the boys really had a hard time - jadon still talks and worries about it) So as a little fun surprise we had a santa come to the house and see the boys. They were beside themselves - they thought it was so cool! and so Jadon said he was "just begging for god to do that again! and telling him how cool it would be and I just know he can do it." I wish you could hear the passion that was in his voice. And I asked him if he was singing in there - thinking surely he was not rapping - I have never even heard him do that. And he says to me "well, actually I was ... until i lost my rhyme... and so I went back to just praying."

How cute is he! he was totally in there making up a rap as his prayer! I love it!

#1 - I can't believe that he remembers that far back!

#2 - How amazing is his heart that he sees that God did that just for him! He was begging god to do it again!!!!

I love it- we should all pray with such passion!

Encouraged

I wanted to take some time in my very quiet house tonight to write down some thoughts I have been having. God has really used time and people to encourage me over the past few weeks.

I have sure been struggling for the last 2 years in my faith in God. my trust. my ability to hope. I am a very black and white person - grey is hard for me. in or out - up or down - you get my picture. and can probably see why being a good mom takes so much work for me! ha ha!

So many people approach me and assume that I see God as a good and wonderful healer and great God b/c of how he has healed kyle. Well I have really been wrestling with that idea b/c in my black and white brain - if god is good b/c he healed kyle ... then who is God to my dear friend that desperately misses her son with each breath!

now I know in my gut - thank you mom and dad for teaching me and rooting this deep in me - I know in my gut that God is good. even in all the hurt and disappointment I walked through I could not walk away from him. I wanted to many times but could not. B/c I know that God is true and Good and right. I just needed that something to base this on - and it could not be about my circumstances.

it think until this last trial it has been. so i actually have begun to see this destruction of my faith as a godsend - purposeful. destruction of the God i had built in my head and an introduction to who he really is.

so here we are at "now". 3 weeks ago or so. I was at a conference (220 to be exact!!) and I as i worshiped and sang i could only focus on grief. all the hurt in the world - how could it be - hurt and worry over kyle - hurt over marriages failing - and the list goes on..... I could not get around it - music evokes so much emotion in us and this was a good way to measure my worship - prayer life and all - when the music was a song about hurt and hope I would just cry such tear of hope and deep sorrow. when a song was proclaiming praise - i felt disinterested - unable to feel anything. so I began to ask God - "why are you leaving me here. I feel like this is you - but why have you given me this burden of sorrow - what do you want with it?" right then a man came up to me and told me he was reminded of a conversation we had years ago about preparing to meet with God and what that looked like. he said that he was just in his seat praying and God told him to come and tell me that "God hears you. God wants you to know that He hears you." WOW - i felt so much relief. like a huge weight was lifted. that night the preacher taught about walking in the spirit. as I prayed about how (always wanting a formula!!!) and a friend of mine decided that maybe it looked like just being obedient. when you feel that urge to pray - do it. when you feel that urge to serves someone - a note, a card, a meal, money - do it. be quick to listen and obey. and then before you know it you are living by the spirit. not sure if we were right but I thought I would try it. still not much joyful emotion coming out of me but this was something I could do.

later that night - a girl is struggling and we are all asked to gather around a pray over her. I was not wanting to so I sat silent. then that pounding in my heart started. DANG IT!!!! i knew I needed to speak and I said I would so I did. opened my mouth and rambled out something about warrior angels. whatever it was I knew I was supposed to say it. ... .... ... ... there I did it. whew....

well - the next night - little did i know God would take me up on it... again. i felt burdened to pray for a woman in a hurtful marriage. my heart broke for her and her family. as I was praying the pastor walked up and asked if I had one particular person on my heart that I was praying for. and of course I answered ... "kinda".... with my best -"get out of here or I will shoot you" look on my face.

back story - after kyle's birth and rough NICU months I lost faith in praying - it didn't "work". i was supposed to pray, kyle was supposed to miraculously have the brain bleed disappear, and that was that. I was to pray and my friends little boy was supposed to live. my prayers didn't "work". my trust in what I trusted (although wrong) was destroyed.

Up to this week I had not prayed over someone with my hands on them with out being forced in almost a year and a half.....

Anyway - he (the pastor) says to me "I think you are supposed to anoint that person with oil and pray over them." I about had a cow! i think i even laughed at him. i didn't even know how to do that. well you know what kept ringing in my ears? obey... listen to the holy spirit. so my heart starts beating like crazy again. AHHHH! so i begin to make my way to where she was sitting and I procrastinate at the end of the row...

...

...

...

...

then the pastor comes to me again - and hands me the oil! he was not giving up. so I decided .. here it goes. and i went and grabbed her hand and asked her if I could anoint her with oil and pray for her. when I did a flood of words came out of my mouth that i'm sure she needed to hear. gentle words of love and hope that i guess the father wanted to tell her through me. I prayed over her and then we went back to our seats.

I kept thinking I should feel something - but nothing. still felt the same.

next day - yes! I know, it keeps on going! i knew i was supposed to pray over my friend - I was not sure how much she would appreciate it. awkward i know.... but I did - right in the middle of the songs I put my hand on her shoulder and prayed. i knew I had to obey. when I was done .. we went on singing and then sat down when the teaching began. in the teaching the pastor said exactly what I had just prayed over her.

ALL OF THIS was amazing confirmation to me that God was in on this. not that I was fixed - not that this would fix me - not that I felt right emotionally - but God had a plan. I was not ruined for nothing - he would build me back. this week was like my rainbow - my promise that God would complete a work in me.

leaving this week i felt like i could breath again.

then 2 weeks later i was at another conference (220 again! - I know... these weeks are great!) a week of huge spiritual warfare - unlike anything I have ever been a part of. teenagers, adults and parents even dealing with abuse, molestation, incest, and sadly so much more. But most of them hungry for healing. what an amazing week. I spent the week learning and soaking up as much as I could from some great minds and hearts this week. but I went into the week saying to God I will be obedient again.

same emotional problems in the beginning of the week - I continued to pray and seek God - what Lord - what would you have me do - i felt nothing and one person challenged me that if someone asked me to pray why didn't i ask the holy spirit what to pray and how to intercede. so i tried that - when nothing came - I did not speak.

I do not have the ability to pray empty words anymore - i will not speak a word b/c it sound good - I will not send messages to those listening through my words in prayer, I will not use God's name or a beautiful cliche as a comma or filler. I just can't - I have to know what all this means and how God intended this communication thing to work.

A strange thing happened one night - i started to feel jealousy towards john as he ministered. this was a struggle of mine - a huge one - several years ago - 6 or so - after jadon was born.

(isn't it sad how we start to measure our time spans by when our kids were born or by when we were pregnant with who! haha!)

I would see john minister to so many and me want that attention from him for myself. It became a very big monster very quickly. but the grace of God we made it through that in our marriage. So I decided to sit behind a curtain that night so I could not see and I could focus better. and I began to ask God "why in the world am i even having these thoughts now?" i am over this? what is going on? " I had no desire to deal with that again!

and then the most amazing thing happened - God showed me or told me or whatever you call it when you have a thought that you think is from him! that the individual attention and affection that I was craving from john was actually what I was desiring from God. and what I was missing. the intimacy from my relationship with God. I was learning the listening and obeying - that was black and white but the intimacy and trust. that is what I was wanting.

so i began to ask God for that - and I was laying it on thick. I told God I needed one of those really intimate relationships where you know what each other are thinking, you know each other are there, you have inside jokes or info. You just know each other. you know the sound of his voice. I told God i needed a way to feel his spirit to sense it - to FEEL close to God. sounds totally cheesy but if you are a girl or maybe a guy too - you know what i mean - that relationship that is so close you know what each other are thinking or what might be the next move or you can sense when the other is there. that is what I was longing for. so I asked!

next day - trying to wrap this up but not miss detail! - i am talking with an amazing woman about this conference that she went to on spiritual gifts. the guys speaking was talking about the steps to move into gaining or using these spiritual gifts... the point is not that - it is this - she told me that the conference teacher said that the first step was .....

1. intimacy with the father.

my jaw dropped. not b/c that surprises me but what did God just show me I was longing for the night before?! and don't worry about step 2 - that wasn't the point. God was again confirming what he was doing in me.

so i went buzzing into the church service that night ready to seek intimacy with my father in heaven. I have an amazing earthly father - i mean amazing!

and for some reason - i think my personality - or maybe a wall or something - it has always been weird to think of God as a father, abba, daddy. all that was really weird to me - too intimate and vulnerable and weird. he was God - if I wanted to get to know him i would read a book. and that works too - but this was different!

so into the worship service I go - on my quest. and let me tell you - I worshiped with a smile on my face like I have not done in years. I laughed as I worshiped b/c I felt like dancing before God on his throne. now - I didn't b/c well I don't know why but i kinda did dance there in my spot. but I felt like dancing in the aisles! that is the joy that I felt - the love - the connection.

I was able to pray over those sitting around me - some one came to me and asked me for prayer - God gave me a verse for them and I think it was to me too - it was a warning not to return to that yoke that held you as a slave. WOW - what a warning.

now - have i felt joy since that day - no - sorry to say - but when I do get angry or really frustrated or disappointed or want to act in pride, hurt, grief, or whatever might be going on - i remind my self that I don't want this to rob my joy. so i take a deep breath and remind myself that God created me for an intimate love relationship with him. not to be angry - he did not create me to live in grief. he did not create me to have a poor self image. he did not create me to mistrust or build walls around me.

what a set of weeks! there is a song we sang that I finally could rest in by the end of the week that says "oh how he loves me so!" and I believe that.

the ever changing song...

Jadon is our little rock star! anyone that knows him can attest to this! funniest thing. he pretends daily to be a worship leader like his daddy. he insists that the show run exactly as he has it planned and there is lights and smoke and a preacher and so on... the other day he came home from the Second Baptist Houston VBS (with 3000 of his closets friends) and he of course bought the cd and had all songs and word memorized.

Once song says "Jesus paid the price; so we could have eternal life..."

His aunt called me during the week of VBS to let me know that she heard him just singing away in the back seat "Jesus paid the price so we could have eternal lice".... nice.... jadon knows what that b/c they check for it at school. but I guess like any talented singer - if you don't know the words - make them up!

Then yesterday I heard him in the back seat listening to the same song - "Jesus paid the price so we could have a fertile life" Not sure where he heard that word! I laughed so hard!

and jack all the while has his mouth wide open with arms and legs flailing - he doesn't usually make sounds he just stares at jadon - wiggles alot - and pretends to mouth all the words!

Kyle is grinning through the whole thing!

Sensory Input

kyle fell asleep after a doctor visit. he has a sucker in one hand and a tongue depressor in the other! He also has ankle weights on his ankles. Just a quarter pound on each ankle. This is for sensory awareness. kyle has a hard time organizing his space. it was described to me best like this - and this is really when I notice it too - he has been walking for a while now but still walks like a new walker. very little balance. tumbles over all the time. if something breaks his organization of "this is how I am walking" he doesn't compensate like he should. ie) stepping over or going around a toy, someone approaching him, a small step, etc. Also if we are at home he is organized enough (b/c we are there so often) that if he wants to go down a small step he usually thinks to hold the wall and step down one foot at a time. but if we were at therapy or out at a newer place he would not stop to think "this is a step, i should slow down and go one foot at a time." if he goes up a step he doesn't seem to notice the if he steps back he will go down a step. all of this b/c when his feet hit the ground he does not gain the same input that we do. so this is why the weights will help.

We have already noticed a difference. It is slow going - but it is a difference.

I wanted to ask for opinions out there from moms who have dealt with this. Kyle is a former 23 weeker but doing amazing. I looked up Sensory Disorder or Pedi Sensory input problems on the web but all I could find were suggestions and info for kids that have this very severe. I read over the diagnostics for SID Sensory Input Disorder and kyle only has about 4 of the 18 symptoms. So I feel like I am having a hard time finding resources. any thoughts out there? i have an amazing team of therapists for kyle. I would just like more reading information.

Thanks.

Kyle is a cutie - he waves bye and says bye bye, he says Hi, Up, Down, Please, Cookie, More, Mama, Daddy, Jadon, and he can bring his arm up to his mouth and make a fart noise! I am most proud of that. he also laughs at himself if he thinks he is funny!