Merry Christmas 2010

We are doing great..Lil C has had no episodes since the end of June..

We enjoyed the holidays alot..I havent been bloging on here since C has been good,but I sure do miss the friendships I made. Anyways hope you all hade a very blessed Christmas also

Still here

We have been busy and doing great! C is doing great and growing like a weed, he has his pt eval next week to see if he should still do Pt or not. He has been growing up way to fast trying to copy every thing his older brother is doing. Today as older brother was doing push ups "yea my four year old does push-ups" lol anyways C watched and then got down and tried to do them himself, me and my MIL was laughing so hard.. He is so dang smart! Its been almost 4 weeks since his last episode.
Really I think God loves showing off His skillz.. Cause there is no doubt He did some AmAZing miracles in C lil life thus far.

last night..

As I was laying in bed I just kept thinking about how blessed we are to have three great healthy kids. I was so thankful to God for His guidance in my baby's life and how the normal body is made up of so many chromosome and cells and such. The detail God puts into each and everyone of us to help us live a life that He has called us to. Then I am told of C's mutation to his 5th chromosome and I started to cry thinking "God must have spent a little more time on you" Its must take a lil extra time to purposely change something that most everyone else in this world has made one way.

C as your mom I know you are speacial, not just because your my son but beacuse I knew from the moment God laid His hands on you that He has great wonderful things in store for you. Life is not by chance it is all part of His great and wonderful plan.

I dont begin to know how much pain you have already faced in such a short time or what you have to do just to keep up. But what I do know is you do it and you have tought me so much of what life is about..You have no clue there is anything "wrong" with you, you just know life doesnt sit around and wait for us to catch up. You my son are a amazing person and I LOVE YOU!

Dr. Appt.

Do you ever feel overwhelmed with information that you feel overstimulated? That is how I felt today after leaving C's nero appt. His nero retired so a new one took over his case he has been a nero for 25 years and he was very knowledgeable,kind and a lil geeky.

He came into the room and before I even sat down he told me I know what is going on..This Dr. then said with 100% that it is not CP/two other Dr. have said yes he does,but he does have dystonia and he believes its the L Dopa version, and then he said he has hyperexplexia. Hpx is a rare genetic disorder that both parents have to be a carrier of. It was another big word that scared me. "but to say it in a normal persons terms its not scary"..Its a mutation of 5 genes that doesn't get worse with time or change. The worst part from what I have read is SIDs is common but he is past that age.

The L Dopa I kinda already knew I don't like the idea of him having to take drugs for the rest of his life and he still might not have to, God has done amazing thing and will continue to amaze people by this lil guys life.

On my way home from the doc my husband was talking to me and telling me how this doesn't change our son. We know who he is and what he is capable of. But what it did do is tell us for sure we are done having kids if we are both carriers and it was only passed down to one of our three kids Praise God..

C's 1 year old pictures

Sleep is a wonderful thing and somedays I miss it so much...BUT not last night C went to bed at 9 and slept till 7 I feel refreshed and ready to face this beautiful sunny day in Az. Have a wonderful Monday people.

Uggggg

Today I was reminded to make C's hearing test and MRI scheduled. In the paper work it talked about his thumb in palm and if he hasn't outgrown it by 7 months further test will need to be done. Well he is 12 months and he still does it most all the time especially when tired or stressed,stimulated or anything like that..I always know when he is trying to catch his balance or focus cause he does it bad at those times.
"not the best pics..lol but just to show how "TIP" has never left"

Then I went to check the mail and got my very first "Raising spacial children" magazine. I am guessing it was sent by UCP. Now don't get me wrong I am very aware that he is doing great I mean amazing...but for me at that moment in my yard reading the title of that magazine was just one of those moments.

My husband and I myself have always wondered about his hearing to softer noises he jumps at loud ones but zones out most softer ones.We just choose to wait till he was a lil older to put him under anastasia again.

Me and lil man took a trip home to Michigan

I had a great chance to fly home to Michigan with only my baby...It was such a great time for C to met aunts, uncles,cousins etc.. He did great on the flight to Mi. and great while there. He was the center of attention the whole time.

On the flight home he had a fever and was on lil to no sleep which is hard for any 12 month old and for C it was no good...The flight attendant was walking the isle with him.God is so good as C went into one of his episodes and we were still on the ground..I was thinking OMG.... This lady across the isle leans over and starts talking to me about C and I shared brifly his history and guess what she was a peds Pt..thank You Jesus for this..She was well informed on his condition and could see his treamers with his stiffness and did some massages and streaches but more then that it was so nice to have someone that just understood, amougst the many glares from the others passengers.

Today my baby is 1

time is flying by...

My baby is almost 1 on the 24th my oldest is graduating Kindergarten and me I am having a moment.. Somedays I cant wait till its night time to tuck all three into their beds so I can have some 'me" time. On the other hand days like this I wish I could slow the hands of time and keep my baby's well baby's... but then again as they age I get to see their own personality's shine.

I will post pictures of baby's 1st bday and my oldest graduation as soon as I get them..


Oh and on the 24th is also my husbands and I 7 year wedding anniversary...I am so in love with this man. He was without a doubt perfectly made for me.He shows me daily a glimps of Gods love by how he cares for us. <3 him

Its back.....and I hate it

The dystonia is back and back with anger! My sweet baby has woken up with what I call Rigamortis, he is so stiff and fussy..and if and after he sleeps it goes away and he is back to normal.
The other night it scared me so bad I almost called 911. Im glad I didnt cause he came out of it with in a hour, but man it was bad.

I need answers..help..prayers..He is 100% developing at a normal pace, but its all in his posturing and his reflexes.Mild CP fits for the most part.But his dystonia that comes and goes and it seems always worst at night is crazy.

So if your the praying type and think about my lil man please say a few words to Jesus for him.

Im still here..

Things have been so wonderful in the our casa that I have been putting writing on the side and enjoying the nice weather and my kiddos.
Lil man has been sleeping for naps and at night for 2 weeks. Get ready for this the last two night he slept completely through the night from 8 till 7. I forgot what sleep felt like, I have energy and I am so happy these days. Blessed is the word that comes to my mind.

My husband has been laid off for a lil over a month and we are already a family that was tight on money,but God is a God of mercy and love He has made me fill like I am his only child or at least His favorite ;) The story of Jesus feeding 5000 with a few Loafs of bread and a fish is what is happening to our bank account,no explanation its just there and God is so very concerned with the small details of all His kiddos life..How cool is that.He has shown great mercy on me and my family and I just want to scream it from the roof top...GOD IS GOOD

Justin Unger

My buddy from high school on his mini tour with JJ Heller..being a goof ball but he can sing.

St. Joe's was a good day..

Yesterday at Lil mans St. Joe's appt. we got answers.. it was a few different emotions I went through.It was validating I think to some degree. I had loss my passion that the Lord was going to completely heal Carter to having the need to prove my case.I felt a judgement around every corner, like I was a mom tring to get attention or something out of the suffering of my baby. At the beginning Carter and I had a most incredible encounter with Jesus I knew that He had done some amazing healing on my sweet boy.I told everyone that would listen about that moment in my room with my 5 week old baby.



Then I started hearing whispers and my focus kinda shifted.For awhile God has really been showing me His glory in Carters life and how the words of few are only the enemy's way of tring to take the Glory away from Him.

The doctor was also able to take away some of those thoughts that it could be something worse.He wants to do some test to make sure his hunch is right but it was a peaceful moment for me he gave validation and also set my fears away.

When lil man was first born and I heared the words Cerebral Palsy I thought my world ended, today I have much hope and lil fear when it come to it.I do at times have sadness in wondering how it will affect Carter as he ages..teasing,playing sports etc... You know those thoughts when you are laying in bed tring to sleep.

Four days of bliss

My sweet baby has been so great the past four days he has slept, played, not gotten fussy or stiff not once.Its times like this that I will start telling myself "see there really is nothing wrong" and from past experiences it seems as soon as I say it "it" happens. Maybe this time he has "outgrown" what ever it is or maybe God knows I need these nice breaks to renew my mind and get some rest.He had Ot today at 11 I love this women and how great but yet so honest she is.

She brought pudding to do paint therapy..he loved it which shocked us both. She also taught me how to do brush therapy, she wants it done every two hours he is awake.We also started music therapy so that will be done in the car since we spend so much time driving around anyways.

He is amazing me with how well he is doing with his therapy well at least his ot.

Notes to self....

This week's Question of the Week over at Multiples...and More is: If you could go back in time (think: Marty McFly) and have a chat with your pregnant self, what would you say?

Well here goes with my first:
You are probably scared and a lil nervous that you are not ready to be a mom "and you are right no one ever is". I would recommend that you learn how to slow down and enjoy the moments. Learn to be still and rest also, like right now not in 5 years..just a thought....It also might be a rough start at first, with your new lil girl.."yes you heared its a girl". I know you think a boy is what you need but this lil girl will change you in ways that you didnt know possible.Don't give up, hold her, kiss her, even if you don't feel it. Thing will change! Don't give up on breastfeeding her, the bond is just what you need and its so good for you both. And coming from a mom that has a 5 year old lil girl trust me when I say this: don't I repeat DON'T beat yourself up for the first few months its will change and you didn't ruin her. She actually thinks you rock!!!

Psalms 139:14

Today as I have spent a good portion of the day praying for a wonderful women in my life that is beating cancer. As I look through all the blogs of moms with children that are fighting to live, or have to struggle to do what so many take for granted.The one single thing that I see in all thier eyes in thier pictures is that they KNOW they are "fearfully and wonderfully made".

Maybe God shows himself to them in a way that we dont take the time to notice.Maybe they are not so busy with the stuff and craziness of this life that they are in His presence and allow thier self to be wrapped in His peace.

Worshiping Jesus is a constant thing when your always in His presence, you dont have to prepare yourself or go to a "place". Your just there soaking up his glory as the rest of the world is so busy and wrapped in the world.

Today I was reminded of who I am and just how egerly Jesus awaits for my whole heart so He can show me how wonderfully He really did make me.

We have the best Ot teacher ever

She is the best, so kind and fun she even lets my older son join in sometimes. Today wasn't one of lil mans better days so she did lots of textile stuff and is bringing lots of things next week to try out on him.
She also said with his feet sweating"never thought anything of it" among many other thing she was becoming a lil more concerned that there might be something more neruo related going on!!Really!!! That's what I have been screaming from the roof tops and it seems like NO one hears me.
She requested lil man to be put into a brush therapy class.Never heared of it but she thinks it will be a good thing for him.So one more class for us but this one seems fun and I think I will learn lots of Sid issues and how to help relieve them.

Before I was a Mom.......

Before I was a mom my house was always in order,the noise level was usually only a small chatter between my husband and I and maybe the t.v. I used to read every night before bed for as long as I would like.

My idea of fresh fruits and veggies were eating them as soon as I open the can..lol..
When I saw a kid throwing a tantrum in a store, I use to tell myself my kids will never do that.
I never had to plan anything. My husband and I are very spur of the moment kinda people and still are just in a different way.The only thing I knew about Pt or any kinda therapy was from when I ran cross country.The idea of having three different people in my house a week helping my son reach his greatest potential was never on my radar.That was something that only "other"people went through.


Now after having kids my house is always a lil hectic the only time it is ever quite is when all 6 of us are fast asleep. We eat a mostly organic based diet lots and lots of fresh fruits and veggies All of the sudden health matters, dinners around a table is important, and reading is still a big deal before bed but now its Green eggs and ham or Doras great adventures.

My kids do have break downs and yes sometimes in a store.We still love road trips that lead to nowhere, it just takes us longer to get there.

Before I was a mom I had never stayed up all night with a sick kid or laughed so hard because I really wanted to cry. I never thought about toxins or plastic cups.I also had never felt a love outside of Jesus that was so real and so strong! Being a mom has changed everything about me and I have three angels to thank for that.I also have lots more changing to do. So maybe when I do another "before i was a mom of a teenager" Ill be able to update you all on how I have changed even more.

Church......

Our church meets Sunday night at 5:30 to about 7:15.Until lil Carter was born it was a simple thing to do.To spend time with our"family" worshiping and hanging out. We loved it! Since Carter has been born its so much harder he is worst at night and still after nine months he has improved its still so hard.

Last night he was doing great and had been for almost 4 days then around 6:45 "it" started he got grumpy,stiff, and didn't sleep well at all! Some days I wonder what causes him to go from good to bad so fast.

His Ot says with all his Sid issue that may be why, but somedays I just don't think that's all it is.
He does seem happy if he is eating though...this boy loves his food!!! :)

Butterfly kisses to my soul

Some days I can be laying in bed and wonder to myself,"did I kiss and hug and just sit and listen to my kids enough today".Some days seem so busy and hectic I feel like a butler and not a Mommy.Some days I really don't "enjoy" my kids! Kids, at least mine just love to cuddle, be read too, and listened too. My kids truly think I am the best mom in the world, maybe even the best person..how humbling is that!!!

My middle son tells me all the time "mom your the best" my daughter which is my oldest loves to hear me tell her story's of when I was a kid "she seems to think that was foreeevvver ago"lol. My youngest just adores me to pieces.It is butterfly kisses to my soul that Jesus allows me to be blessed and loved by these three angles..I love that He trusts me with them and that He believes I am capable of raising them and leading them to His calling for them in this world.

I LOVE happy relaxed Saturdays

Carter has some really good times and the past three days have been just that!! During his good times you would have no clue something is going on "minus the holding left hand to his side a lil more then he should"

Something that has been kinda bothering my husband and I is sometimes his hands mostly left start shaking.Kinda like when he was a very lil new born and having bad tremors.Last night while eating dinner I noticed it again while he was eating it didn't last but 30 seconds but it was just one of those things that doesn't seem normal.
I need to get my cammra fixed so I can put some new pictures up of my sweet lil man

March 4th

We made an appt. to St. Joes Neurologist department when Carter was 8 weeks old,he is now 9 months and we have two weeks left!

I was telling my mother in law that I am expecting the office to have streets of gold with how long it takes to get seen there! They are ranked one of the top neuro places in America!! I am hoping for answer but after so many times it seems he is always doing "good" when at the Dr.We shall see!Say a pray for us that the Lord will show us what needs to be seen!

Strongest baby on the block

Carter had pt on Friday and his pt told me she believes by 12 months there will be no need for pt anymore!! Yahoo one down three more to go. I have always known that he was on time phys. he just lacks a lil in fine gross motor and alot in Sid.

On the 24th he will be 9 months old, in some ways it seems so fast like he should only be 4 months or so and in others in seems he has always been here. God sent the perfect addition to our family when he sent lil Carter Jay!!!

What..?

So I was so confident that rubbing my lil buddy would work again! He laid down at 730 only to wake at 945, and he needed to be changed. As I was doing that I noticed he was acting stiff and in pain,so I went and laid down and as I feed him and barely started to rub him and he arched his back and gave a scream like I had just stabbed him.It then took over hour to calm him again!!!

What am I to do? How can I help my sweet baby to rest and not be in pain?. I so wish his doctors could witness him like that more often!!!

It can be so frustrating not being able to help your child when you know they are in pain or discomfort. Some nights I get anxiety just to close my eyes because I know it will be soon that he will wake,so why go to sleep just to get to that point to be woken?!!

A first

Yesterday after meeting with his Ot she brought up therapeutic massage. Lil man has never been a good sleeper and if we have a busy day he is even worse.Last night as I feed him:he is still breastfeed" I started to rub him how she showed me, and he LOVED it.Thank God for that but even better he slept through the night. Well he laid down at 8 woke at 12 then up at 6.but for us that's wonderful!!!!

My mother in law is going to help me make a weighted blanket for him, we are hoping that will also be of help!!! He is growing so fast and as he grows some thing are less noticeable and some things stand out more.

Mmmm I was just wondering

I was just telling my friend, how when it comes to "normal" children he may not fit in but when it comes to some children with cp he may also not fit in being on the mild scale.I have some people that are not around him all the time saying he seems fine and others that know and love him and are around that do see it.What does that mean for him when he is 5 in school? I want him to grow knowing he has mild cp but that he can also do anything he desires to he just might have to work a lil harder at it.. but what about all the other kids and the parents that refuse to teach there kids that God made every person a lil differnt and to love all and be kind.That is kinda a hard spot for me right now and he is still so young,why do I allow my mind to even go to such a place when I dont know where he will be in a few years from now?!!

So we made an appointment with a specialist, and the first visit she said he is fine, he just has a immature nervous system..We left and the lady's that came there with me we so happy and I also wanted to be, but as his mom I just knew there was something more.I had no clue what but it was I just knew cant explain it kinda feeling!

Well we went back every two weeks for a few visit, the Dr. wanted to keep an eye on him she ran tons of test and all came back good. He wasn't improving though how she thought he would. She then gave him the title of Dystonia and the mild Cerebral Palsy but was confused on the cp because he has some really good days in between the bad!

So that is where we are with my Lil mans journey so far he has a follow up with a new Dr. in a week for a second oppion.

In the beginning..

A few months before getting pregnant with my youngest..I had this feeling something would "go wrong" with this baby.I kept telling myself its a lie and never spoke of it to people..I thought it was just fear...During my pregnancy to him, that thought would creep in every now and again, when it did I just prayed and let it go as nothing more then the Satan trying to provoke fear in me.

My sweet baby was born May 24th 2009 at 2:50 p.m. he was 7lbs10oz 22in long.. Perfect in every way! After being cleaned and checked he was handed to me to feed, we took pictures and many started to come in to visit him.About 30 min after birth he was very very shaky and had low blood sugar ...He was taken from my arms and sent to the NICU, my husband left with him leaving me alone with my thoughts...Let me tell you all those fears came flooding in like a dam that just broke.At this point I had never told anyone of that nagging fear that seemed to linger around.I felt as if Satan was dancing around me with joy,my bf came up there after getting the text and wheeled me down to the Nicu to see my baby boy..He seemed fine to me minus the shaking.After about 5 hours he was sent back to my room and all was said to be ok....

That first night he was a fussy lil one and seemed to either be hiccuping or sneezing all the time. But being my third I wasn't over concerned "just tired". We went home that next day.

At day 8 is when things just started going crazy..He woke at 1 am with crying and by 2 that afternoon I called the doctor saying he was shaking and crying uncontrollably. His doctor advised me to take him to the er since he had a low blood sugar history. The hospital admitted him being so young and how bad he was crying..We stayed there two days in which he cried and never slept, THE DOCTOR WAS BAFFLED, his fin diagnose was he had allergy's to my breast milk.. So I went home and stopped eating everything to no relive in sight!

It wasn't till he was 4weeks that I was at the ER again, it was 1 in the morning and I was alone..He"doc" walked in and my world came to a screaming stop.."I think I may have quit breathing for a moment".He said you may want to get him checked for brain hypoxy.Me not having a clue what that was asked and that's when I first heard the words Cerebral Palsy.