What a Week!!

this past week has been filled with so many milestones, events, and sicknesses in our house its unreal! i am so exhausted! the start of last week i was terribly sick with a head cold. not just any head cold...but the worst! i was in bed as much as i could be with 3 kids and a hardworking hubby! thankfully (so far) chris is the only one who managed to be contaminated by my gross germs. and he is still battling it!

but that didnt stop our week from progressing into a better light! tuesday my little Khloe had her 9 month well visit. i always dread them. i hate hearing how behind she is. what milestones she should be reaching and what she  should weigh...but this time went surprisingly well. maybe because i had already prepared myself for the worst going. i know khloe is tiny. i know she is 'delayed' physically. i know NOT to read the milestone sheets...so going in with no expectations makes things SO much better when things go differently. I always hate going into the exam room and hearing "ok can you please undress khloe and put her on the scale" i cringe. I know Khloe eats...actually probably more than most kids her age. shes nothing short of a savage when she devours her food. especially when its carrots...those poor carrots never stand a chance. but for some reason khloe just doesnt get bigger. she had dropped down to the 10% for weight at her 6 month visit...which really upset me. the doctor assured me it was because there was simply limited muscle in her body and muscle weighs more...but still..i felt horrible. soo when the nurse asked me to put her on the scale..i felt the tears welling up in my eyes..i gave her a big old raspberry on her belly and placed my tiny little girl on the scale...and the numbers came up-- 15.8 pounds!!!! yay!! Khloe has finally packed on some pounds! she moved up to the 25% for weight..i was smiling from ear to ear!! while waiting for the doctor to come in--we played a couple rounds of patty-cake and this little piggy and laughed and smiled..and i loved all over my little love bug. i know shes doing well...but i sometimes feel like i need to convince the doctors and therapists that she is too. i know they see her progress...but i feel the need to make it extra known. i think thats just the mother in me. so when her pediatrician came in he had this shocked look on his face..and he just looked at me and smiled and said...Holy cow look at those legs!!! he knew they had gotten bigger, and stronger, and FINALLY some muscle! i didnt have to point it out, or try to prove it to him...he knew! after her exam and talking about what the specialists were saying and all that jazz-he said to me the difference in khloe from six months to now was like night and day...she has come so far! what an amazing feeling. i cant put into words how that felt. reassuring doesnt quite cover it.

later that night we had a PT session...khloe was in a rotten mood...and threw a full on temper tantrum the whole time. so we did as much as we could with her....but she didnt want to have to do any work..she just wanted her toys and to be left alone..she got up on all fours to crawl but to no avail. she did this a couple of times before i asked the PT how much longer she thought before khloe got her confidence up and what we could do to help her feel secure enough to make that first move...as i was saying that..she took 2 little crawls and fell over! we were both shocked. i think khloe was too. the next couple of days were much like that...2 crawls and a fall..but she kept plugging away. and we all cheered her on..every single time. i know people get tired of hearing me brag about little things that khloe does..or when we are out we clap over the smallest of things...i mean all 5 of us cheer (she cheers for herself) but i feel like when she hears us cheering, or knows we are proud, she feels it in her soul. she knows we love her and are proud of even the smallest of things. i feel like that keeps her going. maybe its all in my head..but its what i chose to believe. i mean seriously- this family could put a cheerleading squad to shame! a few days later....Khloe crawled completely across the living room! she hasnt stopped since. her left leg turns in a lot. but she is VERY conscious of it. and will completely put her right leg over top of her left (hard to explain without seeing it for yourself) so that she doesnt get caught up. and let me tell you...that little stinker is QUICK! she moves!

there was still one more thing we waited for. i am sure most of you have no idea what its like waiting to see if your child will ever walk.  all parents wait for that milestone. its a big one. one of the biggest. ok...maybe the biggest. so when you are told your child may never walk its life changing. my son (better known as moose) is borderline autistic. he has a high functioning version of autism. he has his quirks. he has his routines. and he is delayed without a doubt speech wise. but he is one of the smartest kids i know. he is also clumsy and lazy..and a typical boy who jumps off of things...falls..all of you with a boy know what i mean. i remember the day after hearing khloe may never walk--we were on our way out, and moose takes his sweet old time walking down the stairs. each time he gets down a step its 5 minutes before he makes it down to another..it was snowing that day..and he is also afraid of snow. so he was extra paranoid about it getting on his shoes..i was rushing (as usual) to get everyone in the car before we froze..and there he was taking his time. thinking about each step..and each snow flake. normally i would get annoyed and pick him up and carry him, but that day..i saw the beauty in what he was doing. simply going down the steps. i thought to myself--this may be the last child i teach how to walk down the stairs. since that day...i have seen the beauty in the smallest of things. i cherished the small moments. i realized that no one could give me a definite answer when i asked if khloe would walk. but i wanted to know. i needed to know. i spent weeks praying for a sign. and finally i got tired of wondering. of worrying. of crying. i embraced the fact that this may never happen and thats fine.  shes still ok. there are so many other people with much harder things to conquer than this. i accepted it. i accepted that though khloe may never walk, its not the end of the world. shes still capable of anything anyone else is. so we continued to focus on her sitting, and her crawling...and her smile and just being with her. we shared the news with lexi..and showed moose and lexi how to help her 'work out'-- we found joy in PT and just learning different things about how our bodies work, and how to do things differently to help khloe. we learned how strong of a family we are. how much love we have to offer. and just when things were going great, and khloe started crawling, we were busy cheering for that MAJOR milestone...khloe stood herself up. thats the answer we were waiting for. khloe will walk. we were assured that if she can stand herself up and bare her own weight, she will walk.

i am so thankful for my faith. for a restored faith. i count my blessings all the time. i have learned to count the smallest of things as blessings. my children have helped me see the world differently. i see the world through the eyes of a pure diva (lexi...if you know her you will understand that she is all things that i am not...girly, pink, poofy,frilly,sparkley..and so on) i see the world through an autistic child's eyes ( i see the beauty in routine, taking my time, patience, and every little quirk that moose has) and i see the world through the eyes of   a child with CP ( i see the beauty in determination, again patience, and the smallest of small things) i could not have asked for better children. i know i am suppose to teach them, but right now i am having the best time learning from them.

 thank you god for this family. for my kids, and my husband. thank you for a mother that picks me up and dries my tears, who helps me carry on when i feel i cant. for sending me a man who can finally deal with me (*laughs*) and children who have shown me your face when i lost sight of it. i am a blessed woman.  what more can i ask for? simply nothing.


2 Samuel 7:29 (NIV)
Now be pleased to bless the house of your servant, that it may continue forever in your sight; for you, O Sovereign LORD, have spoken, and with your blessing the house of your servant will be blessed forever."

Khloe's Krew

We have picked a name for the march for babies... Khloe's Krew...PLEASE make sure you join us or donate to our team!!! every little bit counts..and every walker means the world to us!! our walk is Sunday May 1, 2011 at 10am!! we are walking at woodburry commons & i will be contacting each walker when it gets closer to our walk date for shirt sizes so i can place an order for team shirts!!!

make sure you click the link to donate or come walk!!!

Thanks everyone!

http://www.marchforbabies.org/team/t1524322

March of Dimes-- March for babies...

So Chris and I have been trying our hardest to find some fundraising events for cerebral palsy. sadly our local UCP chapters are very inactive and dont do a lot of events..so we decided to join forces with the march of dimes--and do the march for babies. March of Dimes is an organization  whose mission is to improve the health of babies by preventing birth defects, premature birth, and infant mortality. Though M.O.D supports a number of different things,  i wanted to point out how they directly support CP-so i took the following from the March Of Dimes site:


The March of Dimes supports a number of grants on prenatal brain development and factors that may disrupt it.

One grantee is studying how developing nerve cells in the fetal brain respond to prolonged oxygen deprivation. This can improve understanding of how lack of oxygen before or around the time of birth can injure the developing brain and how such brain injuries can be prevented or treated.

Another grantee is investigating how intrauterine infections may contribute to brain injuries that result in cerebral palsy, with the goal of developing drug treatments to help prevent these injuries.

A grantee also is studying specific learning disabilities in young children with cerebral palsy in order to develop improved interventions.

Many other March of Dimes grantees are seeking improved ways of preventing preterm delivery, an important risk factor for cerebral palsy. 


So we are searching for the perfect name for Khloe's team...and we are excited to walk for not just her...but every other child with a special journey! I will keep you all updated on what we are doing to raise money, how to donate to March of Dimes, and let you know all about our team (once we have a name!) 


Our walk date is 5/1
at 10am  in woodburry commons!

again...if you want to join Khloe's team i will have more info in the next few hours! also..if you have any fundraising ideas please let me know!!!

carry me....

Today is the day. today is khloe's ultrasound of her brain. i knew all week it was coming...but today i feel unprepared. i slept terribly, i feel terrible. i have such an uneasy feeling in the pit of my stomach. i know things could be much worse...i am fully aware of that. i know God is guiding me. but i feel so alone. and scared. what if they give me her results right there? what if i look at the ultrasound and see something i know shouldnt be there. what if they find a blood clot, or a tumor, or that her brain isnt growing correctly? my mind keeps taking me to the worst place. i hate waiting. i hate not knowing. everyone that knows me knows i have to know each detail about everything. its like an OCD that i have.

Khloe is just laying here looking at me as i write this and i cannot even look at her. my heart aches for her. i hate that i have to put her through this. i know the test is painless...but seriously who ever wants to do this with their 9month old. today i just feel like this is too much. shes so innocent. so perfect. today i just dont understand. i have such an aching feeling in my chest..for every time i have thought i felt a broken heart, i clearly have never. god my chest just aches. a deep aching. its my soul. my soul hurts. i feel like i have been punched so hard in the stomach. have you ever been punched so hard you get the wind knocked out of you? you know that feeling when your muscles hurt in your belly and you just can help but hunch over to hold yourself up? thats how i feel...mixed with a feeling like i ran too much, and i cannot catch my breath. why am i back at square 1 again? i thought i was past this feeling? this hurts so bad. i have come to realize that the worst feeling in the world is not being able to help your kids when you feel they need you most.

i know im being selfish right now. im being a big baby. there are far more severe things khloe could have in this world. life could be so much worse. but im finding it so hard to keep focused on that today. i just cant do this today. but i have to. time to put my big girl panties on and deal with life. no one ever said this would be easy..

soooo here we go. praying. eating. getting everyone dressed...and its game time. god--please dont forget to carry me today. i need you. i need to feel you today. i need you to hold me and keep me strong so no one else can see me weak. i need to smile because i have 3 kids that base their day on my smile. i cannot let them know i am broken.

I will carry her....

its funny the things kids pick up on. amazing how much they listen when you think they arent. interesting the questions they come up with inside their minds...and incredible how they comfort you without even knowing they did.

today after going to visit my mom, we got home, and while getting everyone to bed lexi had a question to ask us. which is normal in her bed time routine of pure procrastination... "Mom--can you and dad come in here?" she asks...so i told her to hold on..until we got everyone else settled. a few minutes later chris and i go into her room and she asks us to sit down...so we do. she says " i have something serious to ask you.."  so chris and i kind of chuckled and figured it was about a new barbie, or some new toy she saw on her t.v...so she proceeds to ask us " will khloe be in a wheelchair?" immediately my eyes filled with tears. how do i answer this? how can i explain this to a 4 year old? my mind went through so many different answers...first being..."just say no...so she doesnt worry..its a simple answer" but the reality is Khloe may be in a wheelchair. i cannot just say no to something that is a very real possibility. i cannot and will not lie. i asked her to give me and chris a few minutes to talk...just so we both could be on the same page when it comes to explaining this. i didnt want to make khloe appear any different than Lexi or Moose. i didnt want lexi to worry. i didnt want leave anything out so she would wonder. chris and i knew one day we would have to explain this to each of our kids, but we didnt think it would be this soon.

after a few minutes of talking...we decided how we would explain this to her, so SHE would understand. obviously lexi does not know what CP is, nor does she understand all the medical terms...heck-chris and i still dont!  so tonight was my first try at answering questions that my children have about this.

we told lexi that khloe has something that makes her muscles a little weaker than other peoples. but it doesnt make her any different than her or moose or anyone else. we explained that "my friends" that have been coming over were actually coming to help khloe do some exercises to make her very strong, and that khloe will need to work extra hard all her life to stay strong..as strong as supergirl. I then explained to her that wheelchairs help people who have a hard time walking, just like grandma bella walks with a cane, or some people may use a walker, a wheelchair helps people whose legs may not be strong enough for them to walk on...so yes Khloe may not walk, and she may need a wheelchair. but i told her only God knows that right now. Only God knows what khloe will do in her life..and i assured her that whatever God wants khloe to do, will be done..and as long as we let him guide us...khloe will be ok. she asked us if khloe's legs hurt, and we told her no, and assured her khloe is in no pain. she also wanted to know if khloe would still like princess things if her legs couldnt walk...we told her she would LOVE them. she had some more questions, and we made sure we answered each one, as best as we knew how...and as hard as it was. after all was said and done, we tucked her in, shut out her light, and she says, "dad-- if khloe doesnt walk..i wont ever let anyone steal her toys--because she wont be able to run after them" *laughs* and then she says "and dad- who cares if khloe doesnt ever walk...im her big sister...ill carry her forever." with that said, chris shuts the door, and we both broke down in tears.

We will all carry you forever Khloe. forever.

I Am the Disabled Child...

I Am the Disabled ChildI am the child who cannot talk. You often pity me. I see it in your eyes. You wonder how much I am aware of...I see that as well. I am aware of much...whether you are happy or sad or fearful, patient or impatient, full of love and desire, or if you are just doing your duty by me. I marvel at your frustration, knowing mine to be far greater, for I cannot express myself nor my needs as you do. You cannot conceive my isolation, so complete it is at times. I do not gift you with clever conversation, cute remarks to be laughed over and repeated. I do not give you answers to your everyday questions, responses over my well-being, sharing my needs, or comments about the world around me. I do not give you rewards as defined by the world's stardards...great strides in development that you can credit yourself. I do not give you understanding as you know it. What I give you is so much more valuable...I give you instead opportunities. Opportunities to discover the depth of your character, not mine; the depth of your love, your commitment, your patience, your abilities; the opportunity to explore your spirit more deeply than you imagined possible. I drive you further than you ever go on your own, working harder, seeking answers to your many questions, creating questions with no answers. I am the child who cannot walk. The world sometimes seems to pass me by. You see the longing in my eyes to get out of this chair, to run and play like other children. There is much you take for granted. I want the toys on the top shelf. I need to go to the bathroom... oh...I've dropped my spoon again. I am dependent on you in these ways. My gift to you is to make you aware of your great fortune, your healthy back and legs, your ability to do for yourself. Sometimes people appear not to notice me; I always notice them. I feel not so much envy as desire, desire to stand upright, to put one foot in front of the other, to be independent. I give you awareness. I am the child who is mentally impaired. I don't learn easily, if you judge me by the world's measuring stick. What I do know is infinite joy in the simple things. I am not burdened as you are with the strifes and conflicts of a more complicated life. My gift to you is to grant you the freedom to enjoy things as a child, to teach you how much your arms around me mean, to give you love. I give you the gift of simplicity. I am the disabled child. I am your teacher. If you allow me, I will teach you what is really important in life. I will give you and teach you unconditional love. I give to you my innocent trust, my dependency upon you. I teach you of respect for others and their uniqueness. I teach you about the sanctity of life. I teach you about how very precious this life is and about not taking things for granted. I teach you about forgetting your own needs and desires and dreams. I teach you giving. Most of all, I teach you hope and faith. I Am The Disabled Child. - Unknown

Khloe Update!!!

Yesterday was an all around beautiful day. It wasnt just valentines day, but also Khloe's first visit (of many to come) to the neurologist. I was so mixed with emotions yesterday morning, but the one emotion that i did not feel, for the first time in weeks, was scared. It could just be that this is all settling in, or maybe i am a little numb, but i truly think its because i have put so much faith in God. I know i cannot change whatever caused Khloe to have CP, and i do not want to. This is who my Lord intended her to be. He does not make mistakes. he created her perfectly for me. for this family. and even better, he created her in HIS OWN image. what could be more perfect? There were times yesterday where i felt God carrying me. The drive up was wonderful. long but wonderful. chris and i were alone (well...khloe is quiet so it feels like we are alone) and thats something that hasnt happened in probably over a year. we got to talk-and just enjoy each other. of course we love our 2 oldest children, but i cannot say how nice it was to have that mental break!! amazing!! i felt calm. for the first time in a couple of months, i didnt hurt, or cry like i normally would. i was ok. i felt sure of everything. i felt god. filling out the paperwork, chris looked over at me and said "I cant believe we are really here.." its very surreal sitting in a neurologists office with your 9month old. its not something you would ever expect to have to do. but again, i was at ease. when Dr. Roseman (who prefers to be called Bruce) came out to get us, i felt fine. i was ok.  chris was ok. we talked to the doctor, he talked to Khloe, he played with her, examined her, and there were a few things he was concerned about. but he didnt alarm us. he was the greatest doctor chris and i have ever met. so reassuring. he never pointed out anything bad, or that she wasnt doing, but focused on all she was able to do. he was beyond happy that she is progressing above average with her language (making vowel sounds, saying different letter sounds, and engaging with us) and also thrilled that when he pointed to something, she knew to look, which most children dont learn until well after a year!! these were great signs!! We learned that Khloe's CP is only affecting her physically. We still dont know, and wont until it happens, if she will walk. but we know, because he promised us, she will be fine.   This man was amazing. he went out of his way to call the evaluation team in front of us, to tell them that his findings didnt agree with theirs, and that she is not delayed emotionally or socially. he had a revised copy sent from them to us, her ped, and himself. he got her into the ophthalmologist faster. we could not have asked for a better doctor. we did tell him that...and his response was " you both are trusting me with Khloe, thats not something i take lightly, i will do all that i can to show you i am worthy of your trust"...i wish every doctor was like him.

He did reinstate that Khloe does have Cerebral Palsy. He is very concerned with her eyes...as she is going slightly blind in her left eye. well--more than slightly. shes not seeing out of her left eye. She has asymmetric development, meaning the left side of her is developing slower than her right side. this could be caused by a an issue in her brain...she needs to have an ultrasound of her brain. i called today because i wanted to know EXACTLY what they were looking for, which is something called  PVL (PARAVENTRICULAR LEUKAMALAYSIA) if you are unsure of what that is you can read about it here: http://www.childrenshospital.org/az/Site1434/mainpageS1434P0.html

i was and am at ease with this, a woman who i met, her daughter shares the same diagnosis as Khloe, and though she older than Khloe, their similarities are unreal! when speaking with her last night she told me her daughter had a PVL...and i know, without a doubt , her daughter has surpassed all of the doctors and therapists expectations, and that is an inspiration. so i know Khloe will be ok. this is not something we cannot handle. we also have to have her thyroid tested and she needs a CPK test. CPK test will show if she has brain damage due to a brain injury, and because this ISNT something that happened while i was pregnant, the neurologist feels its something that could have happened at the hospital. within a week of Khloe being home she showed early signs of CP.  it will hopefully help us learn what caused this, though we dont really need to know at this point. we just feel its not going to change anything, it cant make her better, or be undone. it is what it is. this is who Khloe was meant to be. we wouldnt have her any other way! We go back on March 22nd to follow up with the tests.. and hopefully we will learn more!

Thank you all for your messages, support, calls and everything yesterday...you all carry us when we cannot carry ourselves. We need all the support we can get at this time in our lives. Khloe feels each one of you. She holds you all in her little heart.

OOOOH BY THE WAY!!! GREAT NEWS we came home yesterday...after a long drawn out day, Khloe was put to bed by her dad, and we heard her screaming and crying, chris went to check on her--i heard this screams--so i panicked and went flying to see what happened --- Khloe went from laying on her back to sitting up!!!!!!!!!!!!!!!!!!!!!!!!!!! she amazes me! she also started clapping for herself in the past few days!!!  just wanted to share that with all of you!!! thanks again for all of your thoughts and prayers!!

I have been chosen

A friend of mine sent me a facebook message titled: " How you were chosen to be Khloe's Mom"  This is one of the most beautiful things i have ever read. I cannot begin to explain the different emotions i felt while reading this. Thank you Carine for sharing this with me!! 


To all of the other mothers of a special needs child..i know you will love this! enjoy!

Behold, children are a heritage from the Lord, the fruit of the womb a reward. Like arrows in the hand of a warrior are the children of one's youth. Blessed is the man who fills his quiver with them! He shall not be put to shame when he speaks with his enemies in the gate. Psalm 127:3-5

Erma Bombeck, 1980

This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over Earth. As he observes, he instructs his angels to make notes.
“Armstrong, Beth; son; patron saint, Matthew. Forrest, Marjorie; daughter; patron saint, Cecilia. Finally he passes a name to an angel and smiles, “Give her a handicapped child.”

The angel is curious. “Why this one, God? She’s so happy.”
“Exactly,” smiles God. “Could I give a handicapped child a mother who does not know laughter?”
“But has she patience?” asks the angel.
“I don’t want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she’ll handle it. I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I’m going to give her has his own world. She has to make it live in her world and that’s not going to be easy.”

“But, Lord, I don’t think she even believes in you.”
God smiles, “No matter. I can fix that. This one is perfect.
She has just enough selfishness.”
The angel gasps, “Selfishness?
God nods. “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, there is a woman whom I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take for granted a ’spoken word. She will never consider a ’step’ ordinary. When her child says ‘Mama’ for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations. I will permit her to see clearly the things I see – ignorance, cruelty, prejudice – and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life.”

“And what about her patron saint?” asks the angel.
God smiles. “A mirror will suffice.”

May 7,2010 On this day, at this moment, my life & my family became complete!

To the Left...To the Left...

Now Khloe is learning how to use her abdominal muscles, spine and hips while standing!

Khloe is such an amazing little girl. She is just so perfect. maybe thats why i have such a hard time listening to people talk about her weaknesses, or her inability to do certain things--according to what the world views as  'normal'. Milestones are becoming so overrated. i dont care what any doctor or therapist or neurologist says, Khloe is perfect. no one can tell me different. Just because she may not sit up when the charts say she should,or roll over the way the rest of the world does, or balance her weight the way doctors would like her to, doesnt mean a damn thing to me. So what..she gets stiff, her tone fluctuates, shes a little delayed on her milestones, maybe she has some feeding issues, or shes extra tiny...who cares. shes perfect. this little girl has shed more light on this world in her 9 months here on this earth than some people do in an entire lifetime. she has strengthened this family beyond measure. shown us how to have faith when we thought it was impossible, she has helped us realize that when we fall to our knees, and our hearts are filled with pain and sorrow, we are just in a better position to pray. who the heck are you people to point out so many imperfections!!! shes just a little girl, who is doing things at a different pace...jeesh!

Ok im done screaming at my blog! if you couldnt tell, i read the paperwork from her PT for the neurologist. big mistake. now i want to beat everyone up!! I know, and i have to always tell myself this when i read through those heaping piles of paperwork, that they are meant to help Khloe. they are meant to point out her weaknesses so we can better help her. i know this. but it still breaks my heart. i mean just when i feel like we are moving mountains, we start to take steps back. Khloe is regressing in some areas physically. she has a dominant weakness in her left side, but recently it has gotten worse. her brain is ignoring the left side of her body pretty much. its almost like it doesnt exist. if you watch her crawl, she wont acknowledge her left arm until its underneath her and becomes uncomfortable. the discomfort serves as a reminder to her brain--basically saying "Hey...I am still here..pay attention to me" and then she will move it. she is still very,very reliant on her hypotonic movements and uses them very much to her advantage. the more she wants to do things, the more she figures out a way to use her stiffness to do them. which is a very bad thing. we cannot have her relying on her stiffness. everything in this report is freaking bad! they FAILED to mention how much better she is doing with putting weight on her legs, or how shes doing better sitting up!! what the heck!!! but worry not, I WILL mention it!! even if just to make myself and Khloe feel better.

Khloe is working on using her Left hand in this picture, reaching for objects and holding them!

I will spend the next couple of weeks trying to help Khloe's brain realize that there is a left side to her body...and it works just like the right. Not exactly what i ever imagined i would need to teach my child...but hey-this is part of this whole journey. this is what is going to help my little girl. things could be a million times worse. each time i start to feel down i try to remind myself of that. it keeps me pretty focused. I have great people that remind me continuously that things could be so much worse. I keep focused an each blessing that comes our way. I focus each day on my little girls smile, because that toothless grin tells me she is happy. I cannot wait to be able to throw a ball to Khloe, or run around the park with her, show her how to jump rope, or dance like crazy (because thats our favorite past time in this house) all over the living room, its going to be the best feeling in the world, because she has overcome so many obstacles. and if the Lord decides Khloe's little sticks will never allow her to walk, thats fine too, because she will still do EVERY single thing her heart desires. EVERY one of them. She will know no limits. We, in this house, teach our children that their lives are limitless...if you want it..go get it. nothing is impossible. Khloe is no exception to that rule. just because these doctors see her as 'different' doesnt mean a thing...we only see her as Khloe.

I wanted to share with you all a video i saw about a year ago, but recently i have watched it probably more than a hundred times, for me, it is an inspiration, a reminder, and mostly, its comforting.  a year ago when i watched this, i cried my eyes out, i was pregnant with Khloe at the time. I had no idea a year later, Khloe would share the same diagnosis of  'spastic quadriplegic cerebral palsy'  as this man, Rick Hoyt. Rick has an amazing story that i read often. Though you may see this as heartbreaking...this is heartWARMING to me. i hope you all enjoy!




 * you may need to scroll all the way down to the bottom of the page and pause my blog music to hear the video music*

For more info on the Hoyt's Journey check this site out  http://www.teamhoyt.com/about/index.html

Matters of the brain...on Valentine's Day!

"Love is all you need" - Paul McCartney

So today I spoke to Khloe's pediatrician who made some phone calls to get her into a neurologist as early as possible. im not sure why there is a sudden rush now, and it is kind of giving me an un-easy feeling. i mean it was just 3 weeks ago we were told that she didnt need to go until she was between 18 and 24 months. why the rush now? im naturally a little panicked because i feel like someone is holding some vital info back from me. the fact that her doctor is calling and making the appointments to get her in sooner is really unsettling. i know he is a fabulous doctor, and with 3 kids, one being my son who is particularly like me, and gets hurt or sick every other day, we have a great rapport with him. he loves us. i mean we probably account for 1/4 of his pay!! but why is he rushing this suddenly? i did ask, and he told me he would just like her to be seen as soon as possible to get a head start on everything...umm a head start? we have had a head start...at least i thought we did. So i was preparing myself for this visit in the future, obviously i knew it would come, just not this soon.

Monday, which also happens to be Valentines day, we will take Khloe to Westchester to see Dr. Roseman. I am hoping he is a nice man, and gentle if he is going to tell us anything worse than what we already know. I am confident that no matter what, Khloe will be ok. i have a tendency to always think the worst, which probably isnt a good idea when thinking about neurological things ;)  but never-the-less God, faith and TONS of prayers have carried us this far, and i know they will continue to guide us through this.

Again, Khloe has managed to do an amazing thing....bring Chris and I together on valentines day!! obviously he would have had to work, but now, we will spend the day together, hopefully receiving some great information and learning some more about Miss Khloe and whats going on inside that little head of hers.  Maybe we can even get some answers or at least be pointed in the right direction to see what caused this.  And if nothing else, we spent the day together...again, maybe not the way most will spend valentines day...but  since when does this family do things the way most do?

This will also be a fun day for Lexi & Moose who get to spend the day with Grandpa...which should prove to be interesting, since Lex already has the whole day planned :)

Hope you all had a great Monday!

On the move...watch out!

Just wanted to share with you all who may not have seen this already, this is Khloe's attempt at crawling.There is power in prayer. Khloe is very determined, and that is evident in this video. she is still very weak, but refuses to give up. the more she topples over, the harder she tries. You can see her left side is very weak, but the good thing is that she is TRYING to use it!!! She is definitely one amazing little girl!!

Path Undetermined...

“My path has not been determined. I shall have more experiences and pass many more milestones.”

I was selfish today. I cared nothing about what else was going on in the world for a whole hour today. i cared only about that hour, and what was going on in my living room. I am back to reality now. i realize your world didnt stop. its ok. i just wanted to let you all know, and be upfront with the fact that my world stopped for an hour today. My little girl is doing such great things.

“Life isn't a matter of milestones but of moments” -Rose F. Kennedy

Today Khloe had PT again. you may remember earlier in the week i was becoming frustrated with not knowing how to deal with khloe's hypertonic moments (where she gets stiff as a bored) i dont know how to 'un-stiffen' her. I was not able to do her PT exercises with her a lot this week because of them. I was getting upset and feeling defeated. after all i should know how to help my child..i hate feeling helpless. so i conjured another list of questions for Amy the PT. When she got here, she hopped right onto the floor and got to work. I was alone today, Chris had a late night at work, so i had 3 little monkeys bouncing off the walls. trying my best to work with Khloe, and still have some control over her older brother and sister (which didnt work at all), i asked all my questions, i learned some more neat tricks to get khloe's little stick legs to bend, and i addressed my concerns with her stiffness. Amy assured me this is all normal for a child with CP. Its all common questions, and continued to show me some great ways to get her to loosen up. although sometimes it will just be beyond what i can do to help her, this seems to work most of the time (today anyway).  I was also told to begin making arrangements for the pediatric neurologist  :( 

“There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.” -Rose F. Kennedy

after all the talking..it was time for Khloe to *SHINE* She received great complements on her sitting :) which melted my little heart. She sat up unassisted for so long we had to stop her to try something else...the little show off!!! Though her standing needs LOTS of work, she stood in front of the couch, alone, for about 20 seconds, while reaching for a cell phone :) and i want ya'll to know, my heart was skipping beats the whole time. i was a wreck! i was so scared her little sticks were going to  give out and  she was going to bang her head or something! i was stuck right up her tush the whole time! but she did it. her legs still have a long way to go. she will still more than likely need braces. she isnt receiving the weight properly. which is because she doesnt keep her feet flat on the ground (either balancing on her toes, or the outsides of her little feet) but that can be corrected with braces!!!  after all that jazz....khloe became more concerned with jumping. she wanted to jump jump jump...and thought this was the greatest thing ever. we would help her stand and hold her hands...and she just jumped everywhere. ( i say jumping..i guess i mean bouncing) she got so silly it became impossible to work with her..so we just had a silly session the rest of the time. she also was showing off her main form of transportation these days, which is rolling. she gets everywhere she needs to by rolling. silly girl. Amy was so thrilled to see her roll, and impressed with her ability to use it to her advantage to get what she needed. shes quicker than the speed of light!!  This is when the greatest part of PT came...Amy told me that most kids with CP dont roll until after 2. and since Khloe is doing this so well, it is probably a great sign that she will have a mild case! obviously she cant guarantee that..and only time will tell...but its a wonderful sign!!! 


So today, Khloe proved, her path is not determined, and that she will continue to meet many many more milestones, and though she may have Cerebral Palsy, Cerebral Palsy DOES NOT have her!!!  For one whole hour, Khloe proved that no one is going to limit her. ever. in that hour, i didnt think of anything else. i didnt care about any other thing in this world, except the beautiful workings of the Lord that were revealed in my living room. it was a wonderful wonderful day.

Rest Peacefully...

If ever growing up I would have been told you wouldnt be here to celebrate your 27th birthday i would have laughed. i would have laughed harder if someone told me a motorcycle would take your life. Not you. No way. you had dreams. You had plans. You were meant to be someone big.

I have spent the past couple years thinking about times that we shared. I have spent time reflecting on our friendship and how we drifted over the years. Though we never parted ways completely, i always kick my own ass for letting my life be taken over by someone who became jealous of our friendship. i think that is one of my lifes biggest regrets. Our times spent together had spaced out, not only due to distance but because of my relationship at the time. I remember the last time we hung out. You came to my aunts house, and we hung out upstairs in my room and talked for hours. it was right before you would head back to college. We talked about everything. You were so excited to tell me all about your relationship and you were glowing!! i was so happy for you, but when it was time to tell you about mine...you became upset. you didnt like him. there were things you said to me that night, that i will never forget. things i should have listened to. I spent that night crying. If i had known, that would be the last time you and i would hang out--i would have done things so differently. You were one of my greatest friends. there are few who know me as well as you did..i miss that. after that night, we spent the next 2 years caught up in our own lives, which happens. I can remember each time you were going to come home, we would make plans-to make plans. somehow they always fell second best to whatever was happening at the moment. God i wish i could change that.  I remember the last time i saw you, i was at the mall..we talked for a few minutes, laughed at some memories, hugged and you told me to call you, i never did. i wish i could take that moment back, i would have hugged you forever. I remember the phone call, the most heartbreaking call ever. I heard patricia sobbing. and she just started yelling...'he's dead'--you were the last name i expected to hear.

I think back to climbing trees in my front yard. how you and trish would make fun of me because i was scared of ants. i would always end up jumping out of the tree. even if we sat up in that tree for hours, we never ran low on things to talk about. what always reins in my head are the talks we had about our futures. We promised to all raise our kids together. To always keep in contact. To make sure every time wee went into the mall--to moonwalk at least once.. (and YES i still do it) we always promised to meet up and eat loaded cheese fries and lemon water once in a while.  I think about these things and just think how unfair it is. you were an amazing person, the greatest friend. the memories we have are countless. I remember when i broke my wrist, during mid terms, i didnt study for any tests, so you had this brilliant idea to have me make flashcards with all the information i needed on them, you told me to stuff them in my cast and no one would find them..i passed my mid terms. I remember the time we were in walmart and you told me and trish you wanted to play truth or dare...we dared you to steal a fishing lure, you unwrapped it, and stuffed it in your pants... your face was priceless when you realized it had hooks!!! Bible class, hands down the best! Me, You and Shane in the back of the class.. and because you were such an 'angel' no one ever suspected you would do anything wrong...so when all of us didnt study, we placed the bible underneath the table and the 3 of us cheated. HORRIBLE!  who cheats in bible class?? what i want to know is if you had to answer to the big man for that one...because im unsure of an excuse *laughs* maybe i can borrow yours! Summer time swimming in my pool..Sundays in church, youth group they all take me back. I have a hard time thinking about harmony because it reminds me so much of you. Remember our Pew Crawl? how we would start all the way in the back of the sanctuary and army crawl all the way to the front underneath the pews? you always won. my big head slowed me down. at least that was your reason why i couldnt win. I remember at your funeral, i sat in those pews, that was the only thing i could think of.  I will  have you know, I have gotten a lot better in pool, each time i play i remember you. You and Danny (Grillo) were unbeatable...but that last time, at classic cue, trish and i put it on you two!! ha! each time i ski i think of you. you were the WORST teacher. ever. but i learned. you wouldnt let me go down the bunny hill..and each time i fell down the other hills, you sprayed me with snow and laughed. i stopped falling. so maybe you werent a bad teacher! Circleville park, bike rides, soccer practice, the food court in the mall, there are so many places filled with memories of our friendship. God, i miss you. I miss that you were only a phone call away. I miss that you would know how to make me smile when things just suck. I miss your banging on things as if they were drums. you made us all nuts. i miss you so much.

last night, i was laying in bed, i started to think about who you would be today. my heart just aches when i think about how you were taken from us so young...but i found comfort in knowing, you are home. I never ever have to doubt that. God has a plan for each of our lives. Once we have accomplished what the Lord needed us to, we go home. not a minute too soon. some people it takes 90 years to accomplish that...it took you 23 short years. you always were a hard worker and an overachiever. you did all the lord had planned in that time. amazing. you said hello to every person you were suppose to, you learned everything you needed to, you laughed the correct number of times, you fell in love, you made life long friends, you did all you needed to. I know who you are today. You are my guardian angel. I may not be able to have you on earth to talk to , but i have you in my heart, in my spirit, and watching down on me.  Thank you for all the memories, for all the laughs, for all the advice (even if i didnt like it at the time). Thank you for being my best friend and one of my greatest childhood memories. I love you forever Richardson. Please continue to watch over us. Your footprints are forever etched in my heart.Rest Peacefully.