Tuesday, November 29, 2016

First round of testing down .. A bagillion to go

So last week we got the results from our blood test (nipt)
Results came back all good and in case you missed .. ITS A BOY!!!

Today was the US day the head looks great all round and definitely closed. Brain was clearly seen and all is normal there too. She spent extra time making sure there were 2 kidneys and blood flow was good to both.

So YAY baby is good!!

However.. About and hour after my appt the Dr called me to say she had a chance to actually review my scans and they believe I may have placenta previa (this is where the placenta attached itself under the baby blocking it's exit through the cervix into the birth canal)
Because it's still a little early in my pregnancy it's possible that everything is just still "low" making look like it's in the wrong spot when it's not. We won't know til after Christmas when we have the next U/S.

So what does this mean .. A C-section for sure and extra monitoring to make sure it doesn't become detatched.

For now we will (try) not to worry and be happy about the good news No Encephalocele


Sunday, October 30, 2016

And so a new journey begins....

Just when you feel comfortable God throws you a ringer....

At this point I can't remember who knows and who doesn't. Kayla has done very well at keeping our secret but...


WE ARE EXPECTING!!!!!

The variety of emotions flooding our household are over whelming. Surprised, scared, happy,
worried...
As many of you know.  We had genetic testing done and it was determined we (both Chris and I ) are carriers for a genetic marker that causes Joberts Syndrome a very rare condition (which Encephalocele can be a side affect/symptom of)

We have a level 2 ultra sound in 2 weeks that will tell us if we are outbid the woods.
Until then we just ask for everyones prayers

Sunday, November 4, 2012

1Qtr down 3 more to go, and let the crazy holiday season begin

So the school season is in full effect. 1st quarter down. If you didnt see my post on FB we got report cards and Kayla is doing beyond fabulous. I am so relieved.

As the holiday season approaches we have decided to do something we wanted to do for Korbin's 1st birthday but just didnt.
We would like to assemble care(memory) boxes to donate to Good Sam's NICU. I have already purchased 10 boxes what we need to do now is stuff them.

Items needed are-
-mold kits for hands or feet
-Flash drives (for pictures the NICU has a camera this makes it easier for families to keep those photos private and take them home)walmart has 2G for $4
-special clothing of some kind...most of the time people do not have months to prepare things like a cute outfit for pictures like we did.
-Blankets
-hats
-disposable cameras
-small stuff animals either for newborn or a sibling
-gift cards to build a bear for the sibling to make a special memory

If you wish to just make a monetary donation to help that is great too!


Hope everyone has a good thanksgiving. I know we have a lot to be thankful for!!

Monday, August 27, 2012

Summers over let the schooling begin..

So all and all we had a REALLY great summer this summer. It was kinda nice me not working and able to spend the time with Kayla. We may have over scheduled her with the summer camps and two vacations.

Summer went WAAAAY to fast.(doesnt it always)

Kayla is a big 1st Grader now. Hopefully she does well with the huge adjustment of all day. After 4yrs of half day I know that's gotta be tough but I think she is well ready for all day :-)

I know I have joked on Facebook and in person about having the new found 7hrs of freedom. People who have young ones still have said "lucky". But I would be lying if I didnt say that first day was REALLY REALLY rough.
It was a harsh cold reminder that I should NOT have had 7hrs of freedom. I should have been ready to pull my hair out b/c my 1yr who probably would have just started walking would be opening every cabinet on the 1st floor pulling everything out, me chasing him ALL day.
I am sure nap times would have been exactly right when I needed to be at the bus stop (or soccer) ..isnt that always how it is nap time.
But instead I sit alone with my coffee dont be envious of me if your toddler is currently tornado-ing through house be thankful and HUG and KISS them every single moment

Its funny how on Kaylas 1st day I was trying to keep busy and that brought me RIGHT by the cemetery gates (running errands for my brother) I had to pull in and stop and sit for just a minute. It was as if he was bringing me there to say its ok mom I love you!

Who knows what this year will bring I have a feeling somethings in the air hopefully its good Lord knows we have had our share of bad.

So here is too a great (school) year!!

Genetics Testing here we come... (forgot to update in July)

So I realized I never made and update this summer that I should have so I will start there.

Late June Chris and I were contacted from Childrens Hospital Genetics team. They had FINALLY after 14M heard back from the Jouberts Syndrome research team at Seattle Childrens Hospital (one of the two genetic syndromes Korbin was suspected to have had)
They wanted to invite us to participate.

What this means...They collected our blood samples and are running tests to see if we both have any genetic markers.. which means if we did that we would be "carriers" making it possible to affect or pass on to other children we may have. What this also means if we are that gives us the knowledge that at some point Kayla needs to be tested so she knows for her future. She has a 50% chance of being a carrier and in genetics that is HUGE. At this time they wouldnt allow us to include her in the blood draw for testing b/c she is 6. But they made a note that we would like to at some point have her tested IF we come back positive on anything.
They told us this could take weeks(its been 5), months or even years to get our results.
So in the meantime..well nothing we carry on as usual

Tuesday, May 22, 2012

and today was.....

All and All it was a good day for me. I know Chris struggled a bit :(
I did have Kayla with me most the day and most of the time you cant help but laugh or smile at the stuff that comes out of that kids mouth :)


This afternoon Kayla and I went and bought a fresh bouquet to put on his grave and her and I just sat on the bench by his grave. It felt like 15mins we both just sat there quite..and for those of you that know Kayla that was a BIG DEAL!!!
She said mommy I really miss him. I said I know honey but someday soon we will see him again. She said I know mom like when I am a teenager.. I instantly FREAKED and said Kayla how could you say something like that I dont want you to die as a teenager...
she said ... (in her matter of fact voice) Mom I mean when I am a teenager and I can come here to visit all by myself...
Awe my heart sank she meant when she gets to drive she would go visit how sweet

We had family over for Dinner and just hung around. We had a cookie cake Kayla insisted and we sang and Kayla blew out a candle..she also insisted.
Some people might think that is weird. Actually I was one of those people. I had a friend in high school and I remember being at her house once when it was her brothers birthday(who had died) and hey had cake and sang happy birthday to him. I remember thinking how WEIRD that was and wondering if something was mentally wrong with them..I was young and I just DIDNT get it. I do now. To that friend if you are reading and know who you are I am truly, truly sorry for ever having those thoughts.

I didnt cry at all today. It was odd at times I wanted too but I just felt so peaceful. Maybe it was the over pour of support and prayers.
It was amazing and I felt it and used it.
Thank you everyone for the kind words and support it really means a lot.

Monday, May 21, 2012

HAPPY HEAVENLY BIRTHDAY BABY BOY!!!

One year ago at this very moment I was laying in bed having what I swore was labor pains. I remember walking downstairs to tell Chris and he thought I was nuts "you still have 7wks you cant be in labor you are just worrying go get some rest" He said.
By morning the pains where 15mins apart he could tell by my face I wasnt imagining them. As we raced to the hospital I remember being so scared and excited at the same time. I knew today was the day I was going to get to HOLD my baby.

It is truly a day I will NEVER forget almost our whole family was there..and even a few friends.

For those of you that couldn't make the Balloon release sunday I would like to share with you the poem I wrote for Korbin- (thank you to my BFF Julie for reading that i know I couldn't have)

My Angel Baby
To my little angel in the sky
A year ago mommy had to kiss you goodbye
I didn't want to let you go
But you made me a better person I just want you to know
Because of you there is nothing I'm scared to do
even if missing you makes me blue
So my beautiful baby boy
every birthday there will be no toy
no laughs, hugs or kisses
only the warmth of your touch mommy and daddy misses
so patiently we wait til the day we are rejoined

I never got to leave the hospital with you
take you home or on trips to the zoo
see your smile, or hear your cries.
or spend hours looking into your blue eyes
All I have are dreams of you,
those of which, will never come true.
My heart sank the day that I knew,
I would never get to raise you.
I had made plans, and had aspirations,
if only I had a little more patience.
I never thought the Lord would take you
away from me so soon.
But, I'll never forget that dismal day,
The day I knew something was not right,
and through many tears I would have to fight.
Now, all I do is dream every night,
about what life would have been like.
To the lord I had sworn
to carry you all the way home
and all we can do is mourn.
because we know you're where you need to be,
even though it isn't here with me.
You are my angel baby because God wanted you with Him.
Now, forever with his angels, His praises you will sing.
None of my dreams for you will ever come true,
because of that day God chose to take you.
But, my angel baby you will always be,
in my heart forever, forever a part of me.







here are the many pictures people took.(thank you everyone)
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and a video my sweet friend Carrie took

Saturday, May 12, 2012

Its almost a year how do you celebrate mothers day with one huge missing piece

Hello everyone! I know its been awhile again



Lately people have mentioned "how are you doing I know his birthday is getting close"



And the answer is different based on my mood that day.




>Today for example if you asked me how I was doing today it would be a BAD BAD day. I am actually practically in tears as I write this. I have been off and on to tears all day. Not just because tomorrow is mothers day and I miss my sweet boy SOOO MUCH.
But also because of the emotional roller coaster my family has been on lately.
There is nothing like a 1am phone call to meet your Cousin(whose like a sister) at the gas station to take her kid so she can rush her husband to the ER who is having bad reactions to the Chemo he received that day.



When you get this scared little 7year old who cant stop repeating over and over "I am so scared, I am so terrified is my daddy going to die today Tonya"..and you dont have a straight answer for this fragile heart..because the truth is NONE of us know if we will die today.
I couldnt lie to her and say he's going to be all right because I dont know if he will. All I could do was promise her SHE was going to be all right because NO MATTER what happens we all were going to take care of her.
I dont know what hurt worse watching my son take his last heart beats in my husbands arms or listening to that scared little girl CRY herself to sleep in the next room.




Now some of you are probably thinking right now.. wait a minute did she just promise her she was going to be alright even tho her dad might die. I know what you some of you are thinking but I have been there and even tho I hurt EVERY single day.. I AM alright.
I have Jesus he loves me and someday I WILL see my son again.(even tho my daughter claims to see him NOW and often)




anyway so that is where I am on a roller coaster. I am just taking each day, day by day. That is really all anyone can do.
I have surrendered to the fact I am not 100% in control and I need to LIVE my life and not wallow in what I can not change at this moment.




Kayla amazing little ball of energy has managed to keep me VERY busy, with school, sports, dance, girl scouts




In just 10 short days my angel would have been 1. I am surrounded but 1somethings every single day. Lots of 1st birthday celebrations lately and it sucks. I never will get to have a party with messy baby to wash cake off of. I wont get to hold him and blow the candles out for him or watch as grandmas pass him around giving birthday kisses. It is also a reminder there will be no first steps, words, days of school, proms, graduation, weddings just me a picture and a few 3D hand and foot molds.
Would he have been a teacher, a doctor, or in the electric/lighting biz like his daddy. Would have been the all star sports boy his daddy has always dreamed of or would he have been the glee/drama geek just to make daddy miserable.




Could this post get any more depressing.. well it could but I will stop and end on happier notes.




1 Corinthians 13:4-8 (New International Version)

Love is patient, love is kind. It does not envy, it does not boast, it is not proud. 5 It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. 6 Love does not delight in evil but rejoices with the truth. 7 It always protects, always trusts, always hopes, always perseveres.


This has always been my very favorite bible verse ever since I was young. I never knew why this was the one that would just be so special. I choose it to be read at Korbin's service...after all it was LOVE that brought him to me, LOVE that choose to give him a fighting chance, LOVE that surrounded him at his birth and peaceful depart. and LOVE that surrounds our family EVERY single time he is a thought or even just because.
I choose the new international version because i LOVE that it uses it
PROTECTS.... it is what protected us to get us through the blessed horrific ordeal
Trusts.. it is what gave him the chance my trust in the Lord
Hopes... i had hope it would be alright no matter what
perseveres.. because it DID Love in the end WON!! We didnt let the Devil fool us with false promises we let LOVE guide us. Jesus gave me that love when he choose death to give me life.. eternal life.






So I end with saying thank you all again who have showered us with that love. It really is what makes the world go round.

If you have not heard of the sweet miracle baby Nora..please visit her blog and read it will really brighten your day and give you a smile and maybe a smidgen of hope if you so need it

http://iwillcarryyou.wordpress.com/






For those mothers out there I wish a happy mothers day. And for the ones like me who are missing a part of their heart in the flesh tomorrow I wish you peace, understanding and LOVE. For I know the heartbreak you will feel.



finally Next sunday May 20th at noon we will be having a Balloon release ceremony grave side at Korbins grave to honor him and say a few prayers. We hope that many of you can make it. There is an event page on Facebook please RSVP so we can have enough balloons
Thanks again everyone!! <3


Monday, February 27, 2012

Oh how one little thing can change your life FOREVER

By little I am talking about a 4lb 3oz sweet baby boy, i miss EVERY single day.

So its 15mins til the 28th of February. A year ago today Me, Chris and Kayla left our home a VERY happy family of 3 on our way to find out what sex our 4th Member would be.

Little did we know our worlds were about to be turned upside down.
35mins after arriving to what was supposed to be a routine gender scan ultrasound.
We didnt leave a happy 3. But instead we left one angry, one terrified and one little one so very confused and scared.
I will never forget the feelings as I googled "hole in my babies skull"

I dont get to visit his grave as much as I used to and that saddens me (winter hrs are shorter)

Tomorrow is going to SUCK!!!!!!!!!!!!!!


I know I have not blooged in a LONG LONG while. Last Tues my Son would have been 9M old and like the months before I cant help but to think of all the things a 9th old should do.
People have asked a LOT lately how we are and commented on the fact I havent blogged.
I am sorry I havent. It has mostly been because I have simply been very very busy.

We DID survive the Holidays. We actually had a very nice Christmas and New Years. We stayed home Christmas morning just us and it was really nice. We also stayed home on NYE with a few close friends.
I'd be lying if I didnt say there were some tears shed but we made it through together.

For those of you who havent heard I AM unemployed. After all that our family had been through last year my parents decided it was time to retire and enjoy life... and rightly earned. (BTW their building still is not even finished repairs from fire)
Although it has been tight for us i have faith the Lord will provide and so far he has in different ways.
I have gotten to spend more time with Kayla, and my sister which is awesome. She just had her 4th adorable little girl. (and moved into their new home)

Kayla has been busy with Girl Scouts (I am the co-leader for her troop) and she LOVES IT, Dance and her Faith studies at Church.
She has lost 6 teeth now. Pretty soon she will have none :O

Chris has been busy at work

We FINALLY after 2yrs painted our house, well the 1st floor anyway. I love it!

I have been busy planning a benefit for my dear sweet Cousin's family. Her husbands cancer that wasnt cured in 2009 has spread. I am hoping to help them with the many medical bills they have gotten over the last 8yrs with his cancer and triple bypass. (see my facebook event page if you'd like to help its going to be a GREAT family event)


All and all we are getting by. We truly appreciate all your love and support you have given us this past year. With out which I am not sure we could have survived

The number one question we get all the time is are we still going to try again.
The answer is YES and hopefully SOON I have been struggling with my weight gain and trying to lose. So stay tuned maybe in the future there will be GOOD news.


I think that is all for now. hopefully I havent forgotten anyone or anything important in our lives.

We love you all!!

~Tonya

Monday, November 21, 2011

6m seems like a lifetime

Its November 22nd and today my son should be 6m old today. 6m is a Huge milestone for an infant. The pain of thinking about all the things a 6m can and should do is horrible. Sitting up, crawling, starting foods. I would trade any of that for a beating heart on my chest in my arms :(
Christmas shopping is not fun this year, it feels like there is someone missing we are shopping for ... and there is. It makes it even harder that there are a few babies on our list close in age

I have no idea how I am going to survive the holidays. On the days I think about Korbin for even a minute I want to start bawling. This is going to sound horrible except to those who "get it" because they have been there but most days I purposely try to forget Korbin. If I dont the pain can be just down right CRIPPLING.
We really wanted this baby we planned and tried for awhile. It wasnt an Uh-oh its just not fair I know I sound like a whinny kid but its not and it sucks.

We kept saying we are trying again no matter what. I said what really are the odds of this kind of thing happening twice...um apparently higher than i thought b/c i have met numerous people it has happened too MORE than once. They are all good people too


I have just been trying to stay busy especially with Kayla..trying to enjoy and not miss any of that stuff with her. I am sure for her sake I will hold it together for Christmas but inside I will be screaming.

I had this whole blog written out in my head a couple of days ago but I am so exhausted right now I cant think of really what to write.


I hope everyone has a wonderful Thanksgiving and gets to spend it with their families.
There are MANY things God gave me that I am thankful for and My family ranks up there #1 <3 Psalm 34:1 I will bless the LORD at all times; His praise shall continually be in my mouth.

Sunday, October 30, 2011

Happy slobering Halloween

Please dont mind the woman who may be crying as the kids are trick or treating....

Its the dreaded "1st" Holiday! ok so many people dont count Halloween. That is obvious by the amount of Christmas deco that has been in stores for WEEKS.
But it is secretly one of my very favorite Holiday's. It sometimes trumps Christmas.. ok sometimes.
I LOVE LOVE LOVE everything about it. I have even had the pleasures of hosting a Halloween Bridal shower and a Halloween baby shower (not the same couple lol)
I love seeing all the little kids all dressed up
I love that us adults get to be kids again and dress up.
I love the fun decorations.
I LOVE the parties
I LOVE the crafts
I love all the FALL fun stuff
I LOVE the fun foods.
I love that my kid goes out and collects chocolate for me to eat..WHAT dont say you dont think the same :)
See whats NOT to love?

This Halloween just will NOT be the same. There is a huge hole where our family of 3 should be a 4.
I cant help but look at all the babies and wonder what would we have chosen to dress Korbin up as. I am sure no matter WHAT it was he would have been adorable. I would have wanted something to coordinate Kayla and I am sure Chris would have wanted some football player or something. The deciding vote would have been none other than Kayla.

People very often ask me how I am doing and the truth is we are "doing". Just doing to get by or on or whatever. We have been doing so much lately trying to fit in all the Fun Fall activities and Chris was out of town for 6days (that was ROUGH) its been a lot. Maybe too much b/c i cant even keep up with things around here.

Camp season is over we closed up yesterday. That was sad it was a nice year at our new place. We LOVE it lots of nice people and SOOO many fun activities. They had the last blast of the year a Halloween party Kayla sang ScaryOkee :) It was fun.

Today we went to KI for the last day. I won 2 tix YAY!! Kids had a BLAST.

As the Halloween season comes to a closing and Thanksgiving and Christmas around the corner it brings a certain fear for emotions that I will probably be feeling then. As I know how I am feeling now.
I know it has only been 5M but I keep wondering WHEN is going to feel different.

Sunday, October 23, 2011

yesterday marks 5M

So yesterday was 5M since we had Korbin.
Chris had been in Portland, Oregon ALL week. it was the longest he had ever been out of town and it was the LONGEST week ever.
After we picked him at the airport we went to HallZOOween we were had a really nice time. Daddy had been up ALL night catching flights home.

Last night (after daddy got a much needed nap) we went out to dinner to celebrate 3, 40th Birthdays for some close friends. It was a nice time and good to be out with friends and laughing.


Alot of you have asked whats going on with my parents building. This week they FINALLY started the clean up. EVERYTHING in the building had to be thrown out. They brought many dumpsters to clear it out.
They plan to strip the building down to the rafters and rebuild.
We are told this could take 3-4 months depending on weather. Hopefully it will be a painless process since it sounds to be a long one.

This week was an emotional one for me a woman in the encephalocele support group said hello and goodbye to her dear son on Monday. Then on Wed on of my very good friends had her sweet HEALTHY baby girl.

Saturday, October 1, 2011

..And Just for FUN lets throw in a devestating FIRE!!!

First and most importantly NO ONE was injured!!

Ok so as many of you heard. The building my parents own that we have been operating our family business out of for 11yrs experienced a really bad fire yesterday. What wasnt damaged by fire was COMPLETELY damaged by water. The fire chief said it was @ 60,000 gallons of water to put that fire out. For those of you that dont live close by and didnt see any of it in person. That was THREE fire trucks with hoses on it for over an hour.
Our roof on the bldg is a flat roof ..if you have ever seen one of those it has a wall around the roof. This one is about 4Ft tall...and when they were done it was FULL...the bldg is about 40long and 15ft wide picture that.(like a public swimming pool such as phillips ..ON our roof)

and because the fire was ON the roof there were MANY holes so almost ALL that water went down into the bldg b/c as we all know what goes up MUST come down :(

Right after the fire was out one of the firemen said they would let us in soon to start getting some things out that could be saved...then not even 15mins later the water just started POURING down :( At that point it was not safe so they wouldnt let us in.
There are drains up there but of course they were clogged with Debris. It was much to dangerous for the fireman to try and get up there to clean it out since they couldnt see the roof (the water was to dirty)

It was all so emotional going from OH no we've lost EVERYTHING, to ok its really not THAT bad we're going be ok, to its not safe you cant go in and losing EVERYTHING again.
I really think I aged 10yrs yesterday I kept thinking all day this CANT be happening this has to be a dream.

First I want to say that The Fire Dept of Delhi (and other dept volunteers) were AMAZING yesterday. I didnt make it there til the fire was almost out. But they did an amazing JOB as some of you saw the pictures on TV the whole roof was engulfed in flames it was BAD!!

They believe what started the fire had to do with the heat process the roofer was using to put on our new roof. They said something got too hot underneath the new roof where they were using the torches and just smoldered all night til it finally took off in flames.
The guy felt so bad and stayed all day to help with whatever he could.
He kept saying you guys are so calm I would be so mad at me.
I looked at him and said "accidents happen! Stuff is simply that just stuff. If you knew what my family has been through already this year you would understand as devastating as this all is it is MINUSCULE compared to that."


The year of bad luck started last year when my parents dog drowned in their pool. Then my mom was hospitalized with Pneumonia and shortly after that she was mugged at walmart where her purse was stolen by some thug.
That all happened in Oct of 2010. I am PRAYING that our year of bad luck is coming to an end

I know they say God only gives you what you can handle but man as some friends said yesterday he either is testing us for sainthood or has some REALLY big confidence in our family!

I would like to look back in 10, 20yrs and have this be the year we can say our family outshine..not just survived. That we persevered above all the darkness and made it b/c we STUCK together. That it will be a story we can tell our grandchildren of how with LOVE and FAITH you CAN make it through ANYTHING.
There have certainly been downs but we have had some up. We have a LOT to give thanks for. We have had more family and friends show love and support this year than most people see a WHOLE LIFE TIME. And there is not enough "stuff" in the world that could over value that!



Set your minds on things above, not on earthly things
Colossians 3:2




Thursday, September 22, 2011

4 months down only the rest of my life to go...

So today marked 4 LOOOONG months since We held Korbin in our arms.
I remember that day O so CLEAR. I remember the anxious, excited, SCARED to death feeling.
Excited b/c I could NOT wait to finally meet face to face my sweet precious boy. To hold him in my arms kiss him smell him tell him I LOVED him.
I never gave up hope that we would get to keep him. When he came out I remember the NICU nurse saying excited with a smile "we got a strong heartbeat here" not until I heard her say just 30 or so minutes later "his heart rate was decreasing" I will never forget that I can still hear her voice in my head..I have no clue what she looks like. I dont remember she could pass me on the street I would never know..unless she spoke :( These are words that will HAUNT me forever.
"If" I get pregnant again I know I am gonna be on PINS and needles the WHOLE time...right down to wheeling me out of the hospital again.
I dont think people understand when something traumatic like this happens how it can affect your WHOLE life.
Yesterday we had an employee we had to let go at work he just wasnt working out and MANY MANY customers were complaining about him. He then made SERIOUS, serious threats on me and my dad. It was such a LONG stressful day. The me eight months ago would have laughed and probably hung up on him. The me post Korbin panicked called the police, cried, locked the door and had paranoia all day. Now I watch my back EVERYWHERE I go. Tonight I went for a quick walk with Kayla in our neighborhood...just across the street to the woods to collect leaves. I left the garage open and the door unlocked normally I wouldnt think twice about this but when we returned I FREAKED thinking what if someone got in and was hiding.

I have been told by others it does get better WHEN> I am patiently waiting but it doesnt seem to be even inching that way.

This evening I got a very touching email from a woman who helped us during pregnancy and after birth (strings of pearls) She has emailed me EVERY month just to let me know she was thinking of us. She must have TONS Of people who contact her daily for support I have NO IDEA how she keeps up with all of it. Most of our family and friends dont remember (or at least they dont say anything) It was really nice of her. Her Daughter Pearl had a terminal diagnosis also :( I guess she just knows how bad it SUCKS!!

That is all i have for now I know its all bad news. I have been told lately the endless bad news is getting old and people are sick of hearing it. Sorry I wish I had better news..BELIEVE me I wish I did.

Wednesday, September 14, 2011

108 and days to go...(but whos counting)

Ok I am and believe me I AM going to party like it's 1999 come New years...next year has GOT to be better!!

Yesterday I went to visit my son the cemetery had called the marker was FINALLY installed (pic below) It was sad and sweet all at the same time.
It is the only thing we ever get to "buy" for him :(

Also yesterday my Moms life long (since kids) good friend passed away. She had a long and tiresome battle with Kidney disease. I know my mom is heartbroken :(

Monday I went for my 3M post delivery check-up. All went well I said I guess I see you for the yearly and she said "yes but I hope to see you sooner" with a smile. So to me that was the "all clear" to try again. Which we will be doing here SOON!
I would be lying if I didnt say I am scared SHITLESS, since genetics told us it could very well happen again.
I am not sure if I posted in the last updates but Good Sam had "accidentally" threw out the cord blood my OB had collected for Childrens Genetics. The woman we were meeting with had called just a dew days after our last appt to tell us.
Well apparently no one had informed my OB and the look on her face was shock, disappointment and anger i could see it, and I KNOW how she felt :(
I said maybe we were meant to never have 100% answers. She replied (with a smile)"ya know and if I know you, the answers wouldnt have mattered you were trying again 100% right?" and yes she is right :)


So far Kayla is doing "OK" in Kindergarten. We are having some stay seated issues with the bus so pray she doesnt get kicked off lol

I had so much more to say but i forgot now. I really need to update more but sometimes i just dont have the energy.






This one shows the vase which we went ahead and ordered too

Friday, August 19, 2011

and the weeks just keeping going by.....

Dear God I would like to return this shiny new car I did not buy it , I did NOT want it and I can NOT afford this lease :(

Ok some of you get that, for those of you that dont I feel lately like I have the "new car curse" you know the one where you pick the perfect car. The "new" one you've never seen before and are sure to WOW people with. Then you pull it off the lot and its EVERYWHERE!!
Well I assure you THIS type of new car I DEFINITELY did NOT ask for...does anyone???
I am speaking of death ...it SUCKS!!!

Since my last post....

my sweet dear cousin Patty called me one night to tell me her niece just dropped dead while playing at a local party place. She was TEN..yes only ten WTH. They are still not 100% sure WHY it happened ...possible unknown heart condition. This was a ROUGH one again and for the 3rd time I just physically couldnt attend the funeral :( I wish I could have been there for her but I know it would have just made the situation worse. :(

Then a mom from my encephlocele support group posted her brother in law (only 19) had died suddenly of a freak accident. She had to pack her newborn who recently had brain surgery up and fly across the country to say goodbye to the brother who hadn got to meet his new niece yet :(

Then earlier this week I got a call that a friend who had been fighting stage IV inflammatory breast was in the hospital and not doing well. Just days later she was moved to Hospice where she passed. I was(am) devastated. I never got to say goodbye I went back and forth debating going up to say goodbye but I wasnt sure I could handle it and didnt want it to be about "me" I know that decision will HAUNT me forever. Since my diagnosis with Korbin she had been checking on me at least twice a week she was that kind of person. While she was fighting the cancer that had spread to her brain and spine, she was taking time to be concerned about me :(
And this is the huge loss this world will suffer. The loss of someone so caring and kind she would take time from her need to heal to check on others.

I remember meeting her on cincymoms (local moms board) Her son who was @16M old at the time was driving her nuts :) he was a mover and a shaker. She desperately needed one of those play yards to corral him in to get yard work done.
I had never met her in person but I spent 3hrs that following Saturday going from yard sale to yard sale to find her one. I could tell just by typed words on a screen that she was person worth doing this for. That she would have done it, if it was reversed. Little did i know she would repay me 10x fold by her care and concern just 3 1/2 yrs later

This morning I went to the visitation to pay my respects and give my deepest sympathies to her family. I did not say goodbye however b/c I know someday I WILL see her again.
As someone said "I'd like to think she is holding your baby right now" I would bet good money on it. Ashely LOVED kids, and more than anything her own two, they were her WORLD. She left behind 9 & 5 yr old. They had to say goodbye (for now) to their 41yr old mom. Its not fair NO ONE should have to grow up with out a mom.
Mom's are the ones who make it ALL better. I will never forget her.


I have had some REALLY bad dreams lately. I have told them to a few people. I will spare you the details. I assure you they are morbid and gross.

I told my BFF last night that if God is trying to break me he is DAMN close. My faith hasnt wavered i know HE knows what he is doing but that does NOT mean I have to understand it..b/c i dont
Then she said something that hadnt even occurred to me she said........
"if we are meant to understand there would be no need for church or prayer"
Wow she is right ..but I still have questions for him when I get there :)

In just 2 days my sweet angel would have been 3M old. Its weird to think now that I would have a 3M old. How different this summer would have been, and I would have loved EVERY min of it. It seems I miss him more and more everyday.

Yes this year has sucked but as a friend pointed out only FOUR MORE MONTHS to go and I am hoping my sister can help end this year on a GOOD NOTE :)

2 weeks ago we went on our annual Soldano lake vacation with Chris's family. It was nice. I did however drink to much one day (damn home made sangria) and had a little break down. Luckily I was with my girls Mandy, Donna and Sarah ...BTW Mandy Eric was NOT MAD ;)
(pictures below the first one was the sky when we arrived at the lake house )

We enjoyed the 1st annual block party here in our neighborhood it was nice to meet all the neighbors FINALLY!!

Next Thursday my baby girl starts Kindergarten. Its been a LONG road to here. I am really stressing about it. I hope this year goes well for her. I have already purchased BonBonerie cookies to start the showering of gifts early :) Poor Mrs Neihaus she has NO IDEA whats about to hit her lol (or the poor bus driver)


That's about all i can think of for now. I have had a lot of thoughts in my mind but never make time to blog.
Thank you for still listening!



Please hug your babies and loved one often. Never go to bed angry. And if your first thought is to DO it then DO it never live with regrets...they tear you down!!



The Lord is close to the brokenhearted and saves those who are crushed in spirit
Psalm 34:18










Tuesday, July 26, 2011

Anniversaries and the vacation refresher ....

So its been awhile I apologize I mean to update then get tired or busy and forget

Last Thursday was Chris and I's 10 year anniversary. The last 10 yrs sure have been a test of for better or worse. We have had plenty of downs. Chris losing his job, having family members die some WAY to young. Taking a huge loss financially on the sale of our old home. MANY MANY health issues with family members. Behavioral issues with Kayla. And too much more to mention. But NONE of that would prepare us for the down of having our son die.
Even with all of those.. the ups out weigh the downs 10 fold. We have each other, Kayla wonderful family and SOO many great caring friends and neighbors that we are so very thankful for and feel so blessed to have.
We celebrated our anniversary with Dinner on wed at the Final cut it was a quite peaceful dinner. We toasted to Korbin
Friday Korbin would have been 2M old I miss him so much.


July 8th we went to Myrtle Beach our 1st family vacation just the 3 of us. I usually have everything packed and planned to the T days before. I didnt even pack us til 7pm on the 8th. We slept in everyday made no plans. Went to the pool and just hung out it was so unlike me and frankly quite liberating. We had a wonderful time and just what we needed some together time.

So last monday we had our appt with Childrens Hospital Human Genetics Dept. As usual it was another appt of ...let wait and see. Our favorite new game I think I have already perfected that so it can go away now..
We learned some things
#1 (which we already assumed but hoped not) they are 99.99% sure it WAS something genetic with Korbin and not just one of those things that happens.
Why, well it was explained that he had more than one anomalies and none of them could have caused the other. So with multiple things that means genetic.
#2 they have strong GUESSES as to the two possible syndromes Korbin had
Meckle - Gruber or COACH ...which we were told over lap on symptoms.
The complications are that BOTH of those each have a 25% chance of reoccurring problems with EACH pregnancy...keeping in mind if Renal (kidney) anomalies repeat that is high chance of mortality again :(
#3 since these syndromes require that BOTH parents each pass a recessive gene onto the fetus/child there is a 50% (or more) chance Kayla is a carrier...having chance one of us passed it to her. Meaning this could affect her pregnancies and children.
While the genetics DR informed us (more like tried to ease our worries) that although our current situation is very real for us, the chances of two people who are carriers actually finding each other out there is really rare...almost as rare as the conditions.

What they are offering us at this time is they are trying to recover the cord blood collected at birth for testing and they are sending everything they have on Korbin to a special group in Seattle who specializes in these types of things...we still may never get definite answers...

Were does this leave us..... it has not changed our minds about trying to have another child. Again we believe there is someone else in charge at all times only he knows when, why , where ect..
All we can do is PRAY. I have had people say HOW CAN YOU GO THROUGH that again and I say.. Korbin. How can we NOT.. if we gave up or never tried we wouldnt have had Korbin I dont for ONE SECOND ever regret him or the brief time we shared with him.
I have searched for the WHY answers WHY did this have to happen to us. For those of you reading who have been through this you know there are NO answers. It sucks. And once, twice or three times makes no difference to me. Especially if there is a chance we can have a healthy baby to take home.

I will keep you all update if anything comes back on the cord blood testing or anything from the group in seattle.


I feel like I had so much more to share this blog entry but I wait to long in between posts I have since forgotten..oops sorry.


Thank you to all who prayed for the Merk family.
Sadly again I need to ask prayers of comfort for another couple The Volz's who lost their (first) child their son Gabriel was born with a rare form of cancer. He was a fighter born June 28th and passed away last Saturday July 23rd.
They are kind and caring people I will never understand why god chooses who he does for these things I just have to have faith.
Please pray for peace and comfort for them during this EXTREMELY difficult time










Tuesday, July 5, 2011

mysterious angels, the wishing well, and our family takes another hit or two...

I will start with the latter.
It started out as a normal holiday weekend. We went to our camp for the first half and finished the second half off with friends and family.
While at camp I got a text from my sister (service there is touch and go you cant dial out to save a life..literally) it read.."did you hear about the baby giraffe" So I instantly tried to bring up facebook to find out what she was talking about sure enough I had service got to the Cincy zoo page and read the horrific update :( (oddly i couldnt get service again after that)
For those of you who dont know Giraffes are VERY special animals to our family, simply they are Kayla's very favorite. She has had a tiny stuffed one she has carried around since she was 9 months old named cappuccino (or cappy as we call her) when kayla heard the zoo was going to have a BABY one well you would have thought this kid won the lottery or something she was BEYOND excited. In fact due to my bed rest I didnt get to take her to see the baby until just this past Monday the 27th
When Korbin died friends of ours even donated in his memory to Zuri the baby.
The loss of the baby giraffe was a difficult one to us..we havent even told Kayla yet and dont plan to until we are on vacation.. a HAPPY place to help ease the pain.

Then hours after getting that call we got word from some dear friends of ours that Tony Merk the little 6yo (bravest little man i have never met) who was battling brain cancer was taking a turn for the worse. His family had done all they could (and the term above and beyond doesnt even describe it here folks) he had emergency surgery on Sunday which the Drs frankly said only bought very little time.
Yesterday at 6:20 pm Tony earned his angel wings and INDEPENDENCE from pain and suffering and went on into the hands of our lord.
This was a LONG painful journey that Chris and I followed closely. Many of the Merks are very dear close friends of ours. Chris has been friends with them since a teenager and they are like family to us.
On the way home from my mom and dads last night Chris and I were saying what a REALLY nice weekend we had. We were surrounded by many friends and family. It was relaxing even tho we ran around a lot and it had almost seemed to good to be true...and sadly it was :(
We had prayed for weeks (months) for a FULL recovery of that precious little man. I had even prayed "oh please lord if my sons brain has to be damaged then HEAL Tony's give him the good working parts so that he may live a full life"
but as always God has other plans and we will never understand them in this world.



The mysterious angel...we are not sure but some time a few weeks ago an adorable white angel statue sitting reading a book just appeared on the back corner of Korbins grave. We thought it belonged to the boy behind him..Austin. So we kept moving it back and it kept inching forward. Last week when the three of us went to visit it had been place SMACK dab in the center of korbins grave as to say HERE silly this belongs HERE!! We are not sure who placed it there or if it truly belongs. No one in our family knows where it came from. But oddly it is VERY fitting you see because Kayla LOVES books. When I say loves I really mean loves. Since she was able to sit up she has had a book shelf in her toy room. At the old house on Morrvue the shelf sat right in the playroom doorway. She used to sit there and pull EVERY book off the shelf to look at. Then after a month or so my very smart best friend (who loves to organize and rearrange entire households lol) said I think we need to move the bookshelf to the other wall that way if she pulls all the books off they wont be all over the floor in the doorway. So we moved it :)
To this day I cant get our of reading at least TWO books a night. Sometimes I will go in at night and she will be up still reading books in bed.
So to whoever has left the angel we love it THANKS :)

and finally The wishing well...
many of you hear this and think maybe one of those things they have at the zoo or museum center you drop the coins in and they spin round and around. Or maybe you are picturing a good ole fashion one like the one snow white sang into with the roped bucket.
Nope that is not what I am talking about here.
Last Thursday I took Kayla to McD's for dinner while placing our order Kayla noticed one of the coin collection containers for the Ronald McDonald house and she asked "mommy is that a wishing well? can I have money to make a wish?"
I stood there in awe for a moment of how a tiny child could bring a realization that we were too blinded to see before. You see I had personally (even tho we always put our change in there) had never looked at it that way...but that is EXACTLY what those boxes are.
One of the moms I have recently met from our Encephalocele support group had just had her son (at 32wks) and was actually using the RMH to stay at while her son Liam was in the NICU. She had been describing all the wonderful accommodations they had there. And best of all THIS particular RMH was RIGHT INSIDE THE HOSPITAL.
Most people dont realize what its like to have a child at the hospital and have to drive so far home and back to be with them that alone is a GREAT reward.
SO after pondering Kaylas question I looked at her and replied "why yes baby it IS a wishing well it helps MANY sick babies like our Korbin be close to their familes" and I handed her a $5 bill and said now make a big wish for those sick babies!!



So its been business as usual for us (running around like a bunch of chickens with their heads cut off)
we are preparing for our family vacation next week.

We ask all of you still following our blog to please pray for peace and comfort for the entire Merk family (and there are a ton of them :) ) as they go through this very difficult and trying time


God bless you all and HUG and KISS your loved ones often!!!

Wednesday, June 22, 2011

Happy one month birthday my sweet Angel

Today is the 22nd just one month ago our angel was born.

Korbin we love you and MISS you so much. Cant wait til we are together again.

Photobucket

Monday, June 20, 2011

Bringing home baby...Not!

So 4wks ago We left the hospital without our baby. For anyone who has experienced this my heart goes out to you. It is by far one of the worst things I have been through.
Being wheeled out of labor and delivery in a wheelchair , holding no baby. Past the maternity desk where the same nurse who checked you in just 24hrs before is still sitting. Sitting in the lobby waiting for your husband to pull the van up b/c there is already a mom and her newborn sitting outside waiting for their car.
Dreading the WHOLE ride home the first time you have to enter your home with the huge emptiness. Crying under your sunglasses as you sit there waiting. Asking to stop for ice cream to stall the inevitable.
Its a feeling I wish on NO ONE. I could never describe that panic and pain.

I will never forget it though b/c instead of having the emotional breakdown I was visioning in that car ride. We pulled up where we had to do a double take b/c someone had mowed our lawn. How nice we thought. Then we notice not only was it mowed but flowers had been planted and new mulch laid.
On top of that surprise my Mother, My Brother Bryan and his family were all sitting on the porch waiting for us with open arms. It was so nice to have them their for s SPLIT second entering the home I didnt feel sadness but welcoming love.
I dont think they will ever know how they saved me from a mental breakdown, and I thank god for that.

Recently people have commented on how well I look , or seem to be doing.
We have been keeping so busy I havent had time to keep up, meet up with friends or even think really...which isnt such a bad thing. I mean I am SAD, very sad inside but I HAVE to carry on I have Kayla. I cant spend my whole life moping around feeling sorry for myself it just wouldnt be productive.
There are also MANY people on my mind and prayers that keep me going too.
I thank god everyday for the blessings in my life...and I have MANY.