3/21...Down Syndrome Day

It is hard to remember what life was like before it took us down the path of Down Syndrome...
It is a part of our journey together that we never would have chosen for ourselves...
It is a piece of our journey that WE were chosen to be a part of!
Today is a day to honor, respect, love and cherish our children that happen to be enhanced with an extra 21st chromosome!

March 21st, World Down Syndrome Day...why?  Because our amazing kids have 3 copies of the 21st chromosome.

It all started with this little guy...our dear, late son, Caleb Andrew...
   

When we learned early on that our son would be born with Down Syndrome and two different heart conditions, we chose to give him life, for however long that may be for.  After many days of agonizing over his conditions and the doctors constantly telling us that he would never amount to anything...that his quality of life would be poor, etc, we finally had to quit listening to the doctors and persevere for our son. Persevere through their negative attitudes and know that GOD brought this VERY unexpected gift into our lives for a VERY specific reason.  From day one he brightened our lives, he taught us so much each and every day about ourselves and about how strong one can be even at just a few days, weeks or months old!  We had no idea what the future held for Caleb, but we knew WHO held his future.  As unexpected as Caleb came in to our lives, we certainly never expected him to only be with us for 414 days. 

After losing Caleb, neither of us felt that we were "done" or "complete" as a family.  Maybe just because we were missing a huge piece of our family or maybe because Caleb was in our lives and a part of our journey, to make us fully aware of the fact that we could handle a special needs child.  We felt that God trained us with a special needs child for a reason and we should not let that training go to waste.  So...6 months after Caleb left our earthly family, we came across this special guy on the internet.  He was listed as being available for adoption on a website that specifically posted special needs children...

Thus began our adoption journey to bring THIS amazing little guy home...he needed a home to love him despite his extra chromosome and we just so happened to know of one!  :)
After a home study, Immigration application, paperwork, notary, paperwork, notary, sign, send $, repeat...we were to the point where we just had to wait for Taiwan courts to do their thing.  Taiwan requires 3 court hearings, each with their own time frame and so we wait...and wait.  Finally last spring, we got the call that Kai was officially ours!  Come and get him...come and be blessed!

For the last 10 months, we have enjoyed every moment of having a toddler back in our home!  Kai keeps us VERY busy and never ceases to make us laugh! 
Never forget the fact that EVERY child and person on this earth has a purpose.  Whether it is to be President or just to bring a smile and extra love to our hearts and homes...EVERY one of us has a purpose!  Whether we have an extra chromosome, the inability to focus in crowded/loud situations, the inability to enjoy all foods, a speech delay/disorder, etc...

We can only hope that our situation has helped you or your family enjoy each day to the fullest...
to do a little extra something special for someone who crosses your path...
to see the good in everyone around you...

Happy World Down Syndrome Day!  The day where we all need to take an extra special look around and honor, respect, love and cherish everyone around us.

Thank you for supporting our family during this journey!
Joanna & John

2 years later...

...well, I guess we get through each day...we are still breathing...yet, we are still missing our precious little boy!  It is so very odd to miss one little guy, while taking care of a different one.

We will always miss our boy, we miss him each and every day.  Yet the memories of him, I feel like they are slowly fading.  It is hard to remember what he smelled like, what it felt like to hold him, rock him, feed him, cuddle him.  What his giggle sounded like, how his toes were always in his mouth...the list could go on and on.  It is hard to not remember Caleb like this...

always in the hospital.  It feels like we spent more time going to and from Fairfax Hospital vs. being home with him, but we didn't.  Not sure why the mind always wants to take one to the "dark" times vs. the good.  It was certainly a VERY difficult path in our lives.  We had to split our time between being with our child at the hospital and being with his siblings at home.  We had to leave a child at the hospital 45 minutes away, to come home and spend a little time with his siblings before they went to bed.  Never was and never will be an easy decision between the two!  Yet, there are so many times, in Caleb's final days that I wish I had stayed at the hospital, by his side, now that I do not have that option any more.

In the end...our faith, our family, our church, our friends are what get us through each and every day!  Through it all, we learned that we have much more in us then we ever imagined we had to give!  If it were not for Caleb showing us that we can truly do it, through his own fight and determination, we would not have Kai.  We would have never pursued a special needs adoption, so Caleb lives on through Kai, through all of us...

Caleb Andrew, we miss you more then we can ever express.  We thank you for showing us how strong we can truly be when the going gets tough!  We hold on to the fact that we will get to see you again someday...

One month ago...

this precious little boy was placed in our arms after waiting over a year for paperwork, court hearings, etc.!!  There is NO way to describe what it was like to finally see him in person after receiving only photos and videos during the year of waiting.  We watched him grow before our eyes and to actually be able to see him in person, well...you can imagine.  We have had such a huge hole in our lives, in our home and in our hearts that Caleb left and to see a little boy with similar mannerisms as Caleb was just too much for this momma.  I lost it!  So Kai bonded with John as I tried to get myself together.  We had waited for that moment for SO very long.  I could have watched John and Kai together ALL day long.  John had him laughing within the first five minutes of their meeting each other.  Kai remains a "daddy's boy" to this day.  He will take it! :)  Kai is already babbling "Da-da-da".

May 6th, 2013 will be etched in our memories for a VERY long time.  It is the day we drove 2+hours to a different area of Taiwan.  The day we met with Kai's social workers and then went to a baby store to get him a few last minute items.  It is the day that we walked in to his foster mother's home, sat down on her couch and watched as she went into another room and brought him out to meet us. 

It is the day that I saw a daddy go from greatly missing two little boys to missing one.  The day that we walked out of the foster mother's home with him in our arms and we will never let him go.  The day that we returned to the agency in Taiwan in order to meet with his birth family - his mother, his father, a grandmother and his 6 year old sister!  The day we watched him interact with his birth family with no clue that it would be the last time he would see them (well, for a long time anyway).  We certainly know and understand the great sacrifice they have made for their son to have a "better" life.  We can only promise that we will care for him and love him just like they would have.

It's official...

As of Friday, April 19th, 2013, Yu-Kai became our SON!  This has truly been a journey that Caleb started a couple years ago and we finally have Kai to continue it with us.  A LONG journey, but we are just so thankful that it is finally official!  We appreciate prayers for us as we have ALOT of details to get through before we travel to Taiwan.  We also appreciate prayers for Kai's birth parents as they prepare to say "good bye" to their son.  They have made an incredibly difficult decision to let their son be adopted in order for him to receive the therapies, specialists, etc. that Down Syndrome children need.  They have given our family an incredible gift by entrusting us with Kai and his upbringing.  We know their pain, we know how much they will miss their son, but we hope they will always know and see through updates and photos how much he is loved by so many already!  If all plans continue to go smoothly, Kai will be in our arms on May 6th, two weeks from today!  We will update this blog as best we can during our travels and certainly in the days and months following his homecoming.  Look out Kai...your life is about to change drastically...but we hope you can feel our love with you already.  Ryan and Sara cannot wait to get you HOME!

Chinese New Year - 2013

Happy Chinese New Year...the year of the snake!  A year of transition - we certainly believe that.  Bringing our little guy home will certainly be a big transition for ALL of us.

With the Chinese New Year just a couple days away...we will now have to wait out the holiday in Asia in order to hear anything about our 2nd court hearing.  Most things will be closed all next week for their big holiday celebrations, so we will just wait....and wait....like we have been for months. 

Thank you for your continued prayers on our behalf.  We still hold tight to the fact that HE is in control of this process and Kai will be with our family in His perfect timing.  We just wish it was a lot faster then it seems to be going.  We have currently waited 3 months since our first court hearing in Taiwan, which was back in November!

We will certainly let you know as soon as we hear anything about our next court date.

Holiday Greetings 2012

Merry Christmas and Blessed 2013 from our family to yours!

As for 2012, it has certainly kept us busy...with paperwork!

We still miss our precious Caleb each and every day, that will never change...

 We are all eager to fill a small hole of our home and hearts...

2013 will prove to be a wild emotional ride.

We have signed, dated, notarized, copied, stapled, mailed, certified, verified and sent 

or received more papers then we can count!

Why? Because before Caleb, we would never have considered 

ourselves capable of adopting or caring for a "special needs" child. 

There is a little boy overseas that was put up for adoption by a loving family of 3,

because they know they cannot care for a Down Syndrome child in their country.

We sent in a family profile to say that we were willing to adopt this precious boy

and they said "YES".  With this response, we began the tedious task of adopting

this little guy.  We have done all of our part required for this side of the world.

We now wait through Taiwan's lengthy court process...after 3 court hearings, he will

officially be ours.  We will then travel to bring him HOME!

We are currently waiting to hear word of court hearing #2 to take place...

we have NO idea when this will occur...

but in the meantime our little guy has gone from living with his birth family for 16 months

to now living in a foster home.  That major change just occurred last week!  We cannot

imagine what he is going through or feeling at this time.  Our hearts break for him

and we cannot wait to finally get all this "process" behind us and be able put our arms

around him and tell him that this is IT - we are taking you HOME, your forever home!  You have a mom and dad who love you and a big brother and sister who cannot

wait to have you home as well.  Clearly his birth parents have made a very difficult decision.

We know their pain...whether you have had to give up your son to heaven or to the U.S. 

in order to have a better life...the pain is deep and we hope to do them proud

by raising their birth son in a loving home. 

                           

One year ago today...straight from your mommy's heart...

...what can a grieving mommy possibly say?  What I would really like to do today is shout from the rooftop "CAN I HAVE HIM BACK NOW?!!!"  There is really no way to "talk" about how much we miss you...there is really no way to describe how much we miss you...yet the images and sounds and events of this past week, as they played out last year...well, they are still so vivid!  On the other hand, what I feel is slipping away is what it felt like to hold you...to rock you to sleep...to give you a bath...to feed you...to have you burp right in our faces after your bottle...to have you blow raspberries at us as we tried to feed you carrots or peas...

I miss this...

the indescribable JOY that you brought to your brother and sister.  You changed their lives, especially Ryan's.  He finally wrote about you in his English class this year...we have been trying to get him to write about you for the last year.  He finally wrote about you as his English teacher asked the class to write about someone they felt was special enough to be on a coin, needless to say, he wrote "my little brother Caleb should be on a coin because he changed my life".  Your brother and sister miss you dearly.  As we all do!  To experience a loss like this is just too much for this momma's heart to handle.  Your daddy and I don't know how to handle it ourselves...let alone how to help your brother and sister handle it.  We can only hold on to the fact that we will see you again.  Which leads me to always ponder what you look like now...how much has Heaven changed you?  Have you grown up or are you still my precious little boy?  Do you still smile as bright as the sun?  Do you still love to put your toes in your mouth?  You were certainly happiest here when your toes were up by your head.  Are you walking?  talking?  I hope your great-grandparents and Jesus are taking good care of you...I hope they are holding you non-stop.  I often pray that you are so loved in Heaven that you do not miss any of us one bit.  I don't want you to feel that emotion at all.  We hold enough of that emotion for you!

Not much has changed around home.  Your room has stayed pretty much the same...your sheet is still on your bed.  Your dirty clothes are still in your laundry basket.  Your clothes still hang in the closet.  Your bouncy seat, bumbo seat, car seat, etc. take up all the space on the floor.  We can't just sell these things and hope the buyer has some idea what they mean...so they sit.  I guess your little brother will be able to use some of them, but at the rate the adoption is going...he will not even be able to wear any of the clothes that I had bought for you to wear last winter.

Thank you for leading us to your little brother.  He will fill a small portion of the hole you have left in this house!  Parents cannot really prepare themselves for having a Down Syndrome child...but you made it so easy!  You were determined to show the doctors how much you could truly fight.  I wish I had the chance to take you back to them to show them just how wrong they were...maybe they would second guess themselves the next time they wanted to tell an expecting mommy that the child they were carrying would not amount to anything...you showed them!  You overcame everything in your first year like a champ.  So we hope you have passed along a little bit of this drive and determination on to your little brother in Taiwan...here's hoping he will be rocking his extra chromosome just like you did!

CALEB ANDREW - We love you and miss you to the moon and back!

If we had to choose just one thing Caleb taught us...

He taught us that we CAN handle a special needs child, something we never imagined we would ever be able to do.  There is really no way to describe all that Caleb taught us and still continues to teach us each day.  Caleb taught us more then we could ever put into words.  We certainly learned to live each day to the fullest, no matter what circumstances we were under.  We struggle with the feeling that Caleb is in a better place…but on his 2^nd birthday, we REALLY wish he was here with us.

Since Caleb’s passing…we have learned that we have to keep busy.  We have to stay busy focusing on the future.  John and I certainly cannot watch dramatic or any type of “depressing” movie!  Even the smallest stories on the news about children catches our attention!  Our heart aches even more for those we know who are caring for a child with medical issues or have lost a child themselves because of a heart condition.  We are still learning how to grieve something like this.  We are still learning how to even handle something like this that comes along in life.  Losing a child is like losing a limb – you have to relearn how to live without that limb.  We have truly learned that only God is in control…

Two years ago…we were getting ready to start another adoption process from Korea.  Our process with Sara went so smoothly, how could we not work with that country again?  Just about the time we were going to start the application, we learned that we were expecting our own child.  As shocking as that was, it was not as shocking as all the news that came right after…the Down Syndrome, the two heart conditions, the 90 miles a week I had to drive to get to the “high risk pregnancy” doctors that were located in Fairfax Hospital.  We tried to handle this all as best we could.  The moment Caleb was born, we were instantly in love and knew we could handle all that came our way with just one glance into his amazing eyes.  

WELL...Fast forward two years, to 2012, 6 months after Caleb’s passing…we have started the adoption process once again.  We have been working at this since early Spring.  There is a little guy in Taiwan that needs a home.  Yes, he sure does have Down Syndrome!  There was NO way we could take what we learned from Caleb and not put it to good use.  We could not let a child, that might not easily be adopted, be sent to live in an institution because they become “too old” to be adopted by some countries standards.  Call us “crazy”, a “glutton for punishment”, whatever you would like.  This is something we have all thought about, prayed about, dug deep to be able to do!  We know many will wonder how in the world we can replace Caleb…well, there is NO WAY to replace Caleb!!  We are doing this BECAUSE of Caleb! :)  This does not erase any of the grief or emptiness we feel each day.  There is truly no way to simply get rid of or cover up those feelings.  We just need this little guy as much as he needs us!  He needs to live in the U.S. where he will have so many more opportunities to receive specialized care regarding his DS.  Again, we just could not take all that we learned from Caleb, especially the simple fact that we can do it - we can care for a special needs child!  This little guy, half way around the world, is currently being cared for by his birth family.  They have made the ultimate sacrifice in deciding that they cannot care for him in a country like Taiwan and that he needs a home where he can receive therapy, specialized doctor care, etc.  If anyone knows how these parents are feeling or how they will feel when they have to finally give their son up to go live in another country...that would certainly be us!  We are blessed beyond measure that these birth parents chose us to care for their son.  We have adopted before and we have cared for a Down Syndrome child before, so we hope these two facts bring his birth parents just a little bit of comfort as we wait out the rest of this process.  

We have finished our Home Study, we are halfway through our Immigration application, our papers just finished being translated into Chinese which has to be done for these papers to be sent to Taiwan to start their court process.  Unfortunately, Taiwan’s court process can be lengthy, a good 6+ months!    All that are involved in our U.S. agency, as well as the Taiwan agency overseeing his care, are in agreement to appeal to the family court to expedite this process as best they can, for this little guys sake.  We covet your prayers that this last piece of the process will go quickly, so we can get him home as soon as possible.  Unfortunately, with us being right in the middle of this process with a particular little one, we do not feel we can post pictures or mention his name yet.  Please feel free to ask us about him when you see us in person!  We would be happy to share our latest photos of him with you.  

 

Most of all…Caleb Andrew – Happy 2^nd Birthday, precious boy!  Mommy, Daddy, big brother & big sister miss you more than anyone will ever be able to describe.  10 hours, 10 days, 10 months, nothing has changed – we love you to the moon and back!  Thank you for each of the 414 days you hung in there with us and ALL that you taught us – esp. the simple fact that “we can do it”!!  A very bitter sweet day to say the least...

18 months & slideshow link

Well, we have made it through 4 months without Caleb. Not one day is easy or proves to get any easier, but we get through them. Today...well, it is one of those days that is hard to get through. Today, 2/2/12, Caleb would have been 18 months old. What a fun age. It has always been one of my favorite times in a child's life as SO much is going on with them at this age...needless to say, I can only imagine what Caleb would be up to these days. Would he be crawling? pulling up on things? starting to 'talk'? How many teeth would he have by now? We would be pouring bottles of Milk vs. formula. We would be doing more table foods vs. baby food...the list goes on and on...


We have been trying to stay busy. The weekends tend to be our hardest time as it is very quiet, slow and lonely. We have been trying to stay busy by working on a couple painting projects and have even been known to make an impromptu trip to a ski place where John and Ryan learned some real snowboarding. Sara just loved finally getting to play in some snow at the end of the ski slope. You really never know what we are going to do or where we are going to appear...beware! :)


Emotions run very high in our house. R&S can go from playing to fighting in no time, we can all go from peaceful to emotional in a flash. You just never know what you are going to get. I can be completely content one moment and the next be hearing a song that just completely reminds me of Caleb and I am a wreck. The songs that tried to keep me upbeat and positive during and after Caleb's surgeries/recoveries, now just remind me of how much I miss him! My life truly went from being a whirlwind of Caleb's Dr. visits, physical therapy, medicine schedule, feedings, to wandering around stores just to kill time, esp. on the days Sara is in preschool.


I have always said Caleb impacted our lives in more ways then we could ever write...but I have truly seen a difference in his older siblings since he has been gone! They both adored their little brother, as most would. But they both certainly knew there was something extra special about this little brother. They have not been the same since. I guess none of us have...never will be. We just try to get through each day the best we can while being sensitive to each others moments. We try to figure out what 'normal' is suppose to be now with the huge hole in our home as well as our souls.

I will never understand why Caleb (& his family!) made it through two open heart surgeries with flying colors, but a blood infection was brewing after the second surgery that we could not see at all. I think back to that time and wonder what signs I missed that there was something going on. I guess every parent who has a child that has struggled with an illness, esp. an illness that claimed their life, goes through these waves of emotion. Just a very wild, tough ride! Grief like this can be a very lonely place. There are so few who have been through and have any idea what it is truly like...we just try our best to not make people feel awkward. It is OK to talk to us, it is OK to talk about Caleb, ask questions, get weepy, give a hug! We would prefer that over people avoiding us because you don't know what to say or do. We continually thank you for your support and covet your prayers.


Slide show remembrance of our precious boy, produced by Unforgettable Productions, LLC

http://www.youtube.com/watch?v=dE7a_VyGipA

J, J, R & S

Caleb's first and only Thanksgiving (2010)

It is truly hard to believe that it has been two months since Caleb left our family...some of the words below I had to copy from a fellow parent who is grieving the loss of their child who has left for 'home' well before we would have liked.

Everywhere.....
Home.
Church.
Target.
At the mailbox.
Driving down the road.
The grocery store.
A friend's house.
Everywhere I go I think of him.

I miss him so much, there are truly no words to describe how much.
I miss our life before he left for Home.
I miss our family as it used to be.

Thinking of him brings joy.
Thinking of him brings sorrow.
Such opposite emotions mingled together ~
inseparable in the thought.

I want to endure.
I want to have character.
I want to have genuine hope.

I want Ryan & Sara to be better, stronger people because of this.
Therefore, I must suffer.
There is purpose in this process.

I could choose to shut my mind off and not think of him, but what a gift his life was (and still is). Not thinking of Caleb would be not thanking Him for such a precious gift.

We are grieving,

but we are trying to figure out how to live life at the same time!

It appears life is as normal.
We go out in public and on the surface we look "normal".
Everyday is hard. Sometimes it's hard to even breathe or pick myself up out of bed.
My tears are always right below the surface, ready to spill out at any moment.

The reality is even though on the outside everything looks OK,
on the inside we are brokenhearted and hurting.
Reminds me to be tender with others...
because you never know what they're going through.

Happy Thanksgiving from our family to yours! What a different holiday we are going to have this year. We hope you have a truly blessed time with your family. Be sure to make lots of extra special memories!!!

There are truly NO words that describe how much I miss your precious face and everything that made you our perfect Caleb Andrew!

What we love (& miss) about you...

C - character. Caleb you had an amazing personality! You never cried about much of anything. You fussed if you were hungry or tired and that was about it. You loved it when someone was holding you or sitting next to you...esp. your brother or sister.

A - agility. You were more flexible then any little guy we had ever met. Your feet were always up by your head and you LOVED them there. I think you hated sitting up so much because you could not have your feet/legs up where you liked them the best.

L - laugh. You had the most infectious laugh. No matter how hard or busy one of our days was together...your laugh and smile wiped it all away.

E - EYES! Your eyes were the most beautiful blue. They were more beautiful then the most perfect sapphire gem! We received so many compliments regarding your eyes.

B - bounce. You LOVED bouncing away in your bouncy seat. You are the only one of our three that could bounce that seat by yourself or cared to anyway. You would bounce and bounce and bounce yourself until we were motion sick.
*****
A - attention. You got attention everywhere we went. Those that were even complete strangers would stop and talk to you and ask all about you. You were certainly stealing your older sisters thunder. ;) You made so many smile without even knowing you personally.

N - nestle. You could cuddle with the best of them and boy did we love to hold you and cuddle you when you were sleeping...well, anytime for that matter! You loved to have our faces right up next to yours...cheek to cheek.

D - DS! After the initial shock wore off that you had Down Syndrome, we felt truly blessed and honored that we were called to be parents to such a special and amazing child!

R - rolling...rolling...rolling. Once you mastered rolling over, you certainly never stopped when you were on the floor. Up there with rolling...Raspberries! You loved to blow raspberries at us any time, esp. when you were eating or suppose to be swallowing medicine!

E - endurance! You overcame SO many odds and obstacles to even be born, let alone your 414 days here with us. You endured two open heart surgeries with flying colors! Will always wonder where that nasty infection came from that took you from us. Even your favorite cardiologist said it is unusual for it to come on so late after heart surgery. You fought it for 12 days none the less!

W - wonderful...you were certainly beautifully and wonderfully made! This momma cannot wait to hold you again...

Video shown at Caleb's service...

A celebration of Caleb's 414 days on this earth. We are so blessed to have been his parents. We don't know why he had to leave us so quick, but we know that God is in control. He is God and we are not and we trust that he knows what he is doing. Many thanks to Steven Curtis Chapman for writing such a beautiful song...

Link to Caleb's video that his daddy put together for the service...
http://www.youtube.com/watch?v=aWn7Ri8mDiM

This is the video that played during the service, this is not the video OF Caleb's service. We do not have that yet.

Caleb Andrew...we miss you more then words could possibly express! Thank you to each and every one of you who have walked this journey by our side. Thank you for the prayers, meals, support and most of all love as we try to figure out how to move forward without our precious boy. We all loved him dearly and he blessed our lives in so many ways in just the 13 months he was with us. He was such a healthy, happy boy and we will never understand why a nasty infection had to take him from us so quickly. We will continue to use this blog...just may take me a little while to figure out what to say...

Caleb's celebration service

Please join us to celebrate each of the 414 days that Caleb blessed our lives! A casual celebration service will be held at Purcellville Baptist Church (http://www.purbap.org/) on Thursday, 9/22 at 4 pm. There will be a short time of visitation before the service starting at 3:30 pm. There is also a reception immediately following the service.

August 2, 2010 - September 19, 2011

Our precious boy went on to his eternal home to crawl into Jesus' lap this morning. There are truly no words to describe how much we miss him already! I am lost without him and have no idea what to do with myself. This house is not the same without him! There are just no words...

Caleb fought as long and as hard as he could. He probably lasted longer then Drs. expected after an infection like this takes over a little body. They did a great job figuring out what it was and getting him the meds he needed to fight the infection, but the damage was already done to his vital organs. His heart couldn't handle the dialysis and other interventions he needed.

We thank you all so very much for the encouragement these last couple weeks. They kept us going during a very rough road.

John & Joanna

We are getting very close to losing our precious boy...dialysis things had to be changed this morning and when they tried to hook him back up to it he had no blood pressure and heart rate about stopped. They had to do chest compressions and a lot of intervention to get him back...he is barely stable at this point and dialysis obviously cannot be started again at this point....

We are faced with the decision whether to put him through another heart surgery to fix the flaps on his valves that the infection ruined or what to do at this point...

On to dialysis...

Friday - Caleb was put on dialysis for the main purpose of trying to help him get this fluid off. It has built up so much in his system that he is having trouble breathing well at this point. It has built up in his belly so that his lungs are not able to take the deep in and out breaths that it needs to. We had a VERY rocky start to Caleb's dialysis as it made his heart rate low and his blood pressure really low. This also makes him very cold and his core temp was only 94 at one point. He is now under a very cozy warming blanket. His oxygen numbers all day had been a problem because of the increasing pressure on his lungs. His ventilator is set at the highest rates possible, so there is no room to go anywhere on that. He did receive some blood last night as starting dialysis obviously uses a lot through the machine at a time, so he was needing some more to compensate. It seems like once the extra blood was on board he was becoming a little more stable. So I headed home for a few hours sleep. Huge thank you to those who donate blood!!! Caleb has needed it quite a bit this week!!

Saturday - I had a very frank conversation with the Dr. this morning when I got in here. We are basically struggling with how much we are keeping Caleb alive with all these machines vs. what is still trying to save him? The Dr. basically said we are still saving him at this point, but we are certainly not far from the fine line that changes to keeping him alive. We do not want our precious boy to continue to suffer if his body is just not able to heal at any point. So we ask for your prayers that HIS will be obvious to us and the Drs. in where we need to go from here in Caleb's treatment. They are much more drastic measures they can try, but we are truly hoping this dialysis will be the answer to his problems and it will be able to get all of the excess fluid off as fast as they can. From there - everything else will be able to heal!

Psalm 107:26-30
New King James Version (NKJV)
" 26 They mount up to the heavens, They go down again to the depths; Their soul melts because of trouble. 27 They reel to and fro, and stagger like a drunken man, And are at their wits’ end. 28 Then they cry out to the LORD in their trouble, And He brings them out of their distresses. 29 He calms the storm, So that its waves are still. 30 Then they are glad because they are quiet; so He guides them to their desired haven."

Thursday - 9/15

Well, one would hope after being here almost a week, we would have plenty to report and update...not so. Sorry to say, we are not really getting very far in Caleb "better". When some lab work shows improvement one place, it also shows that other things are worse. At this point, Caleb has retained so much fluid that he is huge and in a size 6 diaper! He came into the hospital in size 3!! It is miserable to watch and can only imagine how he feels about it all. Although, he is kept completely sedated because of the ventilator. Drs. have tried different meds to make him get the fluids off, but they are just not doing much. His blood pressure has been better the last 24 hours so they were able to come down quite a bit on the blood pressure medicine. This has to be the worst thing a parent could go through...spinning our wheels in hoping Caleb will get better. Just feels like they have been spinning for days now and we are just not seeing any improvement. The liver seems to be getting better according to the labs, but the kidney numbers are worse OR you have one lab item show improvement, but the other lab pieces that go to that puzzle are worse, so he is certainly keeping these Drs. and residents on their toes! I understand this is going to be a very long, tedious process, but it would just be so much easier if we knew how things were going to go...how well he may or may not recover, etc...

So if you are the kind (like me) who likes to know the full run down...
Neurological - hard to say what brain damage has occurred but he does start to stir every so often, but he is just given meds to put him back to sleep.
Respiratory - he is on a ventilator, but his lungs are becoming really affected by all the fluid that is in his body plus that level of inactivity.
Cardiology - his heart rate has been fine. His heart function is somewhat affected. He has what is called endocarditis (sp?) which is where the lining on the inside of his heart is very swollen and mad. This is what is affecting the flaps they just made for him during his heart surgery as those do not open and close anymore. so as the heart pumps out, the heart is not relaxing enough to fill back up with blood and these flaps on his vessels are causing all kinds of 'leakage' or blood just free flowing in and out of the heart. Not pumping out and staying out to go to the body...just back and forth through the wide open vessels.
Liver - lab #s show slight improvement each day, but his bilirubin is becoming quite elevated so he is a little yellow, but NOT the type of bilirubin that can be fixed with photo therapy like newborns.
Kidneys - lab #s show a decline in function each day, which is the cause of why the fluid just keeps building up in his body. But yet, some electrolytes that would be affected by this lack of function are fine.
The cause of all this - Alpha Hemolytic Streptococcus!!! A raging strep infection in his bloodstream. It is a Strep that is found naturally in our saliva and GI tract and how Caleb's got into his bloodstream - we may never know. :(

Will keep this updated as best I can as anything changes, but at this rate...
As you can probably tell, I am quickly becoming one very weary momma. Having a very emotional day and just do not know what to do at this point...how long do we "wait and see"???
Thank you again and again for your support, encouragement, comments, meals, and prayers through all this!

Joanna

Sunday update

Good evening! We are basically still in a wait and see pattern...there is not much that has changed with all of his blood work, etc. The good thing we have to look at is that nothing is worse...just holding steady. Unfortunately, this is holding steady at "very critical", but holding steady none the less! His liver function tests still show a very sick organ by how insanely high the numbers are for his liver function so that has not gotten any better. His heart has been affected by this infection by more leakage from his surgery areas then before and the right side of his heart is not functioning the way it should or as well as it should. His kidneys are not working as well as they should, but at this point it has affected his liver the most! That is basically not working at all. This affects how well his blood clots, his glucose/blood sugar numbers so he has been on a little sugar IV as well as insulin and I am sure many more things. They are trying their best to regulate everything as well as they can from the 'outside'.

The cultures they have sent off to the lab are already showing something 'growing' in the blood culture. So far they are thinking it is some kind of strep infection...which one, we do not know yet. Here's hoping that the antibiotic they have started him on is near the one he needs to kill this nasty infection. He has been given medicine to help him void some of the fluid that is building up greatly in his system. He now looks like a sumo wrestler...it is pitiful! I guess I could take a pic of him tomorrow just for you all to see our extremely strong little guy!

Thank you all SO much for your prayers and words of encouragement. I came home tonight to get clean and to hopefully get some sleep. I also needed to see Ryan and Sara as I have not seen them or been home the last couple days. Here's hoping with tomorrow being Monday things will move a little faster when it comes to Drs., etc. It is always hard in a hospital on the weekends, they are just not staffed the same as they are during the week.
Please pray for John as he tries to focus at work, for Ryan as he just started the 5th grade and my parents, etc. who are caring for each of us the best we all can!
Thank you!
Joanna