Friday, March 24, 2017

Hard News and Good News - Day 2 of 13

Do: Remember that the top step is a little taller than the others when you are carrying Timothy, groceries, and miscellaneous objects.

Don't:  Touch the screen of your phone accidentally when using Google Maps in the middle of Philadelphia.  This may, through the magic of the electronic age, add another stop at the train station before the hospital.

Today was fairly predictable, with just one extra stop (chuckle).  Remarkably we weren't late.

He's just so sad all the time. (Laughing...note sarcasm)

The casting went pretty well.

 He remembered the pain of recasting and when they sent a new doctor to take the cast off, he...well...hmmm...let them know it.  Let's just say that is vocalizations could be heard throughout the floor.  It didn't hurt and part of it was fear/anger, so I just constantly reassured him (though not sure he could hear me...smile) and kissed his forehead. For the second cast they sent in a doctor that was familiar and he LOVES.  He didn't cry, not a peep.

He HATES the saw with a passion, but I think I would too.


Dr. VB and another doctor (the one he loves and I'm BLANKING on her name) recast his feet and legs.  We go through another round of this on Monday.


This part does hurt, not the recasting itself, but the positioning and stretching of his feet.  He's told me throughout this afternoon, "Mommy, my feet owie."  He says it with a smile, but they hurt.

He chose red and blue for Captain America.  He's really never seen him, except for a toy, but loves playing Captain America with his brother (smile).



Timothy is just a brave kid and an inspiration in spirit.  He goes through so much, but smiles through it.

Soooo....I was able to have a longer talk with the doctor, asking questions.  I'm still processing, thus this blog not being super informative, but I'll share what I'm currently chewing on.  It's not bad, but just "more".

Timothy's legs and the balls that go into his hip sockets (forgive me technical terms...chuckle) are above the actual socket.  Does that make sense?  Picture looking at a picture of your hip sockets and your legs are not connected and muscles and such have brought the top end of your legs above those sockets.

They are going to try to bring them down, but that doesn't always work.  When that happens, they may shorten the bone.  If you think about someone trying to make you shorter by taking a horizontal inch or two of your bone, then you have the idea.  That's pretty hard to get my mind around.

They also may have to work on the hip socket itself, but cannot tell until they go in.  Plates and pins are a definite.

Not everything was hard news though.  They are doing two last castings for a reason.

Did you pick up one very important word from the last sentence?  "Last"

They will be doing surgery on his feet as well, to bring them to a flat position (that is the hope at least).  Yes, this means more surgery, but it also means that when this full body cast comes off and he has a few weeks of recovery...HE CAN LEARN TO WALK!!!

THAT has been the goal all along.  Yes, there are possibilities of things coming up and more surgeries being needed.  We know at least one wrist surgery is in the plan.  We are holding onto this thought though...PRAISING GOD!!!!

So that's it.  That's Timothy's eventful day.  We picked up food out of sheer exhaustion and came home to eat and take a LONGGGG nap.  We will head to the grocery store tonight.

It's wild.  We are both just so tired.  Even Timothy is crashing hard at nap and night time.   We are doing good though.  We continue, as always, to ask for prayers.  Surgery is Wednesday at 1:30 most likely.  I'll keep the blog up to date with any changes.

Thank you all for every text you've sent.  Email you've written.  Prayer you've said.  They are felt in our hearts and lives.  For those helping with our bunch of blessings back home, thank you.

To Anna, Max, Bekah, Sarah, Steve, and Mom...thank you for being such amazing kids (sticking together and working hard), a wonderful brother, and an amazing example of a mom.  Thomas, you know I love you and praise God for the man you are and the day I borrowed a pen from you.

Miss you so much Ben, Jael, Gabe, and Rachel!!!! Miss you Tom, Elizabeth, Alessandra, Ivan, and Isabella.  

Speaking of Isabella...she found her feet.



~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Here are  our prayer requests:
*That the surgery goes better than ever expected and that God guides the surgeons hands and decisions. (Dr. VB)
*That there is minimal blood loss.
*That the casting is the least of extremes necessary (not splits position) and there is no swelling.
*That pain is less than expected and managed well.
*For Timothy to emotionally do well through this, trusting us.
*For healing to be thorough and no further surgeries necessary for his hips.
*For the trip back to be "doable" and very uneventful.
*I ask for prayers as well, for me.  Please pray I make the right decisions and am able to rest and stay well.
*Please pray for the family at home to stay safe and for it to be a peaceful time for them.

Adoption:
*Please pray our LOA comes in this week.
*Please pray God touches hearts and we can meet this matching grant in the next few weeks.
*Please pray God protects Grace and Glory.

Others:
*Please pray for the Smith family at the loss of their precious Daniel.
*Please pray for the Kelly family.  This young family suffered the loss of the mother, father, and two of their children.  Please pray for their two remaining children and grandmother who survived the fire.  I cannot imagine.
*Please pray for my friend "M" who has a new blessing and is in the process of transition.  Please pray for NO hiccups between the many parties involved.
*Please pray for my friend "K" and her husband and child.  They are at the date of when their baby should've been born (who went to be with Jesus). 
*Please pray for many in the battle of discouragement/feeling of failure.  This seems to be the tactic the master of lies is using with MANY right now.  It's dark and a twisting that satan likes to do.  Please pray protection for all those facing this right now.
*Please pray for Brandi (someone precious to me) who is facing surgery on her leg right now, that it goes perfectly.

"Who is like you, Lord God Almighty?
    You, Lord, are mighty, and your faithfulness surrounds you."
Psalm 89:8

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

We continue to ask for prayerful support as we seek to meet our matching grant with LifeSong for Orphans.  We raise $4000 and they will double it.  We cannot use any of our own money.  Money can be donated online or a check can be sent (with our family name and number on it) sent directly to them.  The directions are on the same link below.  We have been told to expect (if normal can be expected) our next paper for the girls within the week.

LifeSong for Orphans Matching Grant~Family #6758



Thursday, March 23, 2017

A Mama of Two Minds-Day 1

I was thinking last night as I ached to just be able to stay home and snuggle my kids. I'm just letting you know I was actually thinking (wink).  That in itself with the sleep deprivation is a feat.

With these huge medical decisions, my brain seems to split and argue with itself.

It looks something like this.

Timothy is happy, why take a risk to do what some doctors even refuse to repair at this age?

Walking...running...do you think he's going to be a teen and say, "Mom, no big deal that you didn't give me that chance?"

Everyone is born differently though.  Timothy's joy comes from the inside.  I honestly think he was born with it.  I think the joy would still be there.  The risk of blood loss alone should make you reevaluate.

Really, life's risks are inherent.  We take risks daily...even with traveling by car...to improve our lives in some way....even if the risk is taken just to work for money to be able to eat.  Is this risk not worth it?

You have to weigh the greater risk.  Is it really worth it if something seriously goes wrong?  Are you going to look back and wish you'd thought longer about this?

A Life or death risk is almost daily.  Who knows what another driver will do at 70 miles an hour?

Seriously?  You need to back off.  This is my son.  Don't compare this surgery to the risk of driving.

The reality is, we don't know what tomorrow will bring at all...or if we will even wake up tomorrow.  Giving Timothy the best quality of life IS our job.

The risk may do exactly the opposite of that though.

Then the third voice charges in, splintering the door like a bear burst through it...a mama bear...words scattering as if blown in a hurricane.

We did NOT bring him home to live in fear, but give him what should've been given him in the first place!!!  You need to suck it up buttercup (sorry if that offends some, but really...this voice is VERY loud and extremely forceful) and deal with your emotions.   God lined everything up perfectly.  You KNOW this is THE plan...HIS plan.  

So that's just a glimpse of what goes on in my mind.  I'm sure you can guess what voice wins.

~~~~~~~~~~~~~~~~~~~~~

We are now in the New Jersey/Philadelphia area.  The family we normally stay with is ill, but we will be stalking them soon enough (chuckle)....as soon as their stomach virus has passed.  I feel a little like we are coming home here in a way...to friends.  We are staying at the preacher and his wife's house for now as they opened their hearts and home to our family.  They are on their own trip right, so it's quieter than I'm used to.

I have a couple friends keeping me company though.




Please keep praying friends.
(The last post explains exactly why.)

Here are  our prayer requests:
*That the surgery goes better than ever expected and that God guides the surgeons hands and decisions. (Dr. VB)
*That there is minimal blood loss.
*That the casting is the least of extremes necessary (not splits position) and there is no swelling.
*That pain is less than expected and managed well.
*For Timothy to emotionally do well through this, trusting us.
*For healing to be thorough and no further surgeries necessary for his hips.
*For the trip back to be "doable" and very uneventful.
*I ask for prayers as well, for me.  Please pray I make the right decisions and am able to rest and stay well.
*Please pray for the family at home to stay safe and for it to be a peaceful time for them.

Adoption:
*Please pray our LOA comes in this week.
*Please pray God touches hearts and we can meet this matching grant in the next few weeks.
*Please pray God protects Grace and Glory.

Others:
*Please pray for the Smith family at the loss of their precious Daniel.
*Please pray for the Kelly family.  This young family suffered the loss of the mother, father, and two of their children.  Please pray for their two remaining children and grandmother who survived the fire.  I cannot imagine.
*Please pray for my friend "M" who has a new blessing and is in the process of transition.  Please pray for NO hiccups between the many parties involved.
*Please pray for my friend "K" and her husband and child.  They are at the date of when their baby should've been born (who went to be with Jesus). 
*Please pray for many in the battle of discouragement/feeling of failure.  This seems to be the tactic the master of lies is using with MANY right now.  It's dark and a twisting that satan likes to do.  Please pray protection for all those facing this right now.
*Please pray for Brandi (someone precious to me) who is facing surgery on her leg right now, that it goes perfectly.

"Your love, Lord, reaches to the heavens,
    your faithfulness to the skies." Psalm 36:5

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

We continue to ask for prayerful support as we seek to meet our matching grant with LifeSong for Orphans.  We raise $4000 and they will double it.  We cannot use any of our own money.  Money can be donated online or a check can be sent (with our family name and number on it) sent directly to them.  The directions are on the same link below.  We have been told to expect (if normal can be expected) our next paper for the girls within the week.

LifeSong for Orphans Matching Grant~Family #6758

And We're Off!!!

Wednesday, March 22, 2017

The Next Thirteen Days ~ Timothy's BIG Surgery


I woke up this morning feeling like mini dinosaurs were sitting on my eyelids.  My body screamed at me, "Go back to sleep! There's absolutely NOTHING you need to worry about today."

My brain spoke up about then and whispered, "Ummm...excuse me (my brain doesn't like to be rude), don't you have a trip tomorrow to prepare for."

My eyes, who use a bit too much colorful language, said some choice words about then.

I'm thinking I listened to my brain, but I cannot be sure my eyes are actually open.

Tomorrow we fly out for Timothy's big surgery.

(I think my eyes knew I'm not quite emotionally ready for this adventure.  Personally, I think my heart has been explaining a little too much to them.)

This surgery has been explained to me more and more over the last few weeks.  It's not going to be a walk in the park.  I knew this, but the pain involved is more than I imagined as well.

Timothy's last trip in January

The entire trip is going to be painful for Timothy.  I've seen a soupcon of behavior stuff this last week, so I think he knows too.

It doesn't start with the surgery.  The day after we fly in (the 24th) he has casting of his feet (the casting goes to his thighs).  This is to reposition his feet as much as possible before the surgery.  His feet have been cast for a bit over two months (due to the rescheduled hip surgery).  The cast removal  is now scary for him because he knows the repositioning of his feet (and recasting) is going to hurt.  He'll have the weekend to rest, but on the 27th (Monday) he will go for recasting again.  Tylenol and Ibuprofen help, but it doesn't take away the fact that the procedure hurts period.

He really is so happy most of the time anyway, except during the procedures.  He will fly through this and with a good attitude.  That's just who Timothy is.

On the 29th Timothy has his hips put in their sockets.  This will be a first in his life.  The balls that pops back into his sockets are facing the wrong way though (straight up instead of slightly in).  His bones will have to be reworked.  They may place metal plates, pins, whatever is necessary.  They truthfully won't know exactly what will be needed until they are in there.

He then will be in the PICU for two to three days and in the hospital a total of around five.

He will have a body cast from the chest to the toes.

The scary stuff?  Blood loss, reaction to anesthetic, swelling in his cast, the unknowns.

Jael's wheelchair fitting in December 2016

It will hurt...a lot too.  He will be on heavy duty pain meds, from what I understand, for the first two weeks. (Also, this will be the case when he gets the cast off in the minimum of six weeks.)

So here's the thing, yes...I will update here as I can...but we need to make sure we have prayer cover for this major surgery.

Here are  our prayer requests:
*That the surgery goes better than ever expected and that God guides the surgeons hands and decisions. (Dr. VB)
*That there is minimal blood loss.
*That the casting is the least of extremes necessary (not splits position) and there is no swelling.
*That pain is less than expected and managed well.
*For Timothy to emotionally do well through this, trusting us.
*For healing to be thorough and no further surgeries necessary for his hips.
*For the trip back to be "doable" and very uneventful.
*I ask for prayers as well, for me.  Please pray I make the right decisions and am able to rest and stay well.
*Please pray for the family at home to stay safe and for it to be a peaceful time for them.

Adoption:
*Please pray our LOA comes in this week.
*Please pray God touches hearts and we can meet this matching grant in the next few weeks.
*Please pray God protects Grace and Glory.

Others:
*Please pray for the Smith family at the loss of their precious Daniel.
*Please pray for the Kelly family.  This young family suffered the loss of the mother, father, and two of their children.  Please pray for their two remaining children and grandmother who survived the fire.  I cannot imagine.
*Please pray for my friend "M" who has a new blessing and is in the process of transition.  Please pray for NO hiccups between the many parties involved.
*Please pray for my friend "K" and her husband and child.  They are at the date of when their baby should've been born (who went to be with Jesus).
*Please pray for many in the battle of discouragement/feeling of failure.  This seems to be the tactic the master of lies is using with MANY right now.  It's dark and a twisting that satan likes to do.  Please pray protection for all those facing this right now.
*Please pray for Brandi (someone precious to me) who is facing surgery on her leg right now, that it goes perfectly.

"Know therefore that the Lord your God is God; he is the faithful God,keeping his covenant of love to a thousand generations of those who love him and keep his commandments." Deuteronomy 7:9

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

We continue to ask for prayerful support as we seek to meet our matching grant with LifeSong for Orphans.  We raise $4000 and they will double it.  We cannot use any of our own money.  Money can be donated online or a check can be sent (with our family name and number on it) sent directly to them.  The directions are on the same link below.  We have been told to expect (if normal can be expected) our next paper for the girls within the week.

LifeSong for Orphans Matching Grant~Family #6758

Tuesday, March 21, 2017

A Few Things You Should Know ~ WDSD 2017

Today I've kind of bombarded my Facebook friends with information that just seems to come pouring out.  There are certain things I longed to say.

You see, today is World Down Syndrome Day.

These children have my heart and so I need to speak.


I'm not sure I can create a post that is clearer than the things I've shared today on Facebook.  I've decided I'm not even going to try.  If you want to learn a bit, not only about Down Syndrome, but about words that can hurt, our babies, and my heart....keep reading.

~~~~~~~~~~~~~~~~~~~~~~~~~~~

Today is World Down Syndrome Day. The date 3-21 is symbolic of three copies of the 21st chromosome being present in every cell (Standard Trisomy 21). I'm going to be throwing some info out there today, as well as glimpses of my heart. We have four children with Down Syndrome, two sons and two daughters.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Did you know there are actually three types of Down Syndrome? 
(1) Standard Trisomy 21 is the most common, with 90%-95% Down Syndrome being this. This means there are three copies of the 21st chromosome in every cell.
(2) Mosaicism in which only some of the cells have the extra copy of the 21st chromosome. This happens about 1% of the time.
(3) Translocation in which only a full or partial 21st chromosome attaches to another chromosome (usually 14). This happens in about 4% of cases of Down Syndrome.
Three of our children have Standard Trisomy 21. Our Hope-Glory has the Mosaic form from what we have been told.


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

What not to Say: 
Example: "Down's Kid" "Down Syndrome Child"
What to Say Instead:
Example: "Child with Down Syndrome" "Adult with Down Syndrome"
Why?
This one just doesn't bother me. I know our friend's intent and huge hearts. If you've said it to me there is NO judgement. I do understand why it can be upsetting though for many. I had to learn and wanted to share this with others.. It makes sense. It's not about being politically correct. You see, Down Syndrome is just part of who our children are. It does not define them. They ARE a "child with Down Syndrome", NOT a "Down Syndrome Child". It is not ALL of who they are. It's the same with other special needs. It doesn't sound as thoughtful and loving to say, "Autistic Kid" "CP Kid" "MS Kid" "Arthrogryposis Kid". We put any diagnoses BEFORE the child, and it just sounds like we are defining the child by the diagnoses. Yes, it IS a part of who they are and there is NO shame in that. They (as with every child) were beautifully created. This (seeing only the diagnoses) is a war a bunch of battle weary parents are having day in and day out. People can underestimate our children. People can see the diagnoses instead of our child. Let's put the child first, even in words.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Down Syndrome Myth:
"Children with Down Syndrome are ALWAYS happy!"
When we were in the process of adopting Jonathan and then Benjamin, a couple of parents who have children that have Down Syndrome pulled me aside. They laughed and said that people would come up to me and tell me EXACT the myth above. I didn't think much of it. Within a month of coming home with Benjamin from Eastern Europe, a kind woman came up to me and said, "I LOVE Down's kids (see previous post)! They are ALWAYS so happy!!!!" What they didn't know is Ben, not 15 minutes earlier, gave me a run for my money. He was in a MOOD (as every child is at times). He was grumpy and NOT happy to be out and he had been letting me know it. The person had just received one of Ben's winning smiles and high fives before making that statement.
Children with Down Syndrome have their own distinct personalities. Ben has his happy times, but also his sad, mad, and stubborn times. He has an inner contentment that I find hard to describe, but he's his own person. I have heard this same thing from many families. Some children truly are born joyous (one of mine was/is that does not have the diagnoses of DS). It's just not necessarily an inherent trait in all children that have Down Syndrome.

(Of course, while writing this post, this is what Ben was doing.)


~~~~~~~~~~~~~~~~~~~~~~~~~~~~

What not to say:
"Retarded" "Retard"
What to say instead:
Intellectual disability, Intellectually challenged, Learning Issues...and a million other more specific and kind words.
Why?
I admit this word makes me cringe. In past generations it has been used as a diagnostic term, so none of us should jump to a conclusion that 100% of the time it is said, that it's meant to be ugly. It doesn't mean we have to like it though. You see, in our current generation, "retard" or "retarded" is used in what I call "trash talk". It's used to say someone is stupid, an idiot, or "less than". It is no longer used as a diagnostic term (nor should it be since it means something different now). You don't have to let your imagination run far to realize how someone initially viewed children who have special needs as worth less. They then took that word and twisted it.
Okay, so we can use it in trash talk then? It doesn't bug my friends.
Nope, please please don't. I'm truly genuinely asking you not to. Because it's previous diagnostic meaning, there is no way to safely use it without ties to the past. It may hurt someone who may say nothing. Many of us, parents to special needs or children with cognitive issues, have heard our children referred to with this word. (Can you tell I don't even like to say it?) It makes me ill to hear and when used, even in trash talk, it infers a "less than" that goes beyond mere trash talk.
All this is to say, please don't say it. There are complete websites devoted to this subject. It's a demeaning word and there's no reason it should hurt to drop it from your vocabulary. Even if you don't agree with me, consider dropping it out of love for us, the neighbor, the family at school, the new member at Church, or your coworker who happens to have a brother with special needs (that you never knew about). Let's throw the "R" word in the trash where it belongs.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~



I really don't like this shirt. It's constantly popping up on my news feed.
When I first saw it I was like, "YES! Shout it!" It took me mere seconds to change my mind. It wouldn't bother me even slightly to see another mom wearing it, but it's not me...very not me...or many of my friends. Maybe it's meant to remind us that we are strong enough to do this and in that way it IS good, but....
As parents of children that have special needs, we are not super heroes and sometimes we are remarkably weak. We are human. I've had said to me (more times than I can count), "I could never do that." "You are a super hero!"
I'm not and my fellow parents are not. We are honored to take care of a child that has special needs, some extreme. It's a privilege to take care of any child...period. I am not a power house. God gives me the ability to do what is in front of me. If God calls you to this life, He will give it to you as well. There are days where you will be remarkably strong. There are days where the fetal position looks wonderful. There are days where you will survive on no sleep and wish a machine could monitor the caffeine in your blood and shoot you up with more caffeine when it was depleted.
So, this shirt? No, most of us are not particularly strong. We are just a people. I long for more physical strength and plan on focusing on that, but it doesn't take a super hero to parent a child. It takes someone willing. It takes a lot of prayer. It takes a lot of God.
(P.S. Funnily enough, I hadn't even noticed the lack of "person first" in the wording of this shirt that I talked about in a previous post.)

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

On my heart right now: Two little girls await overseas. They happen to have Down Syndrome. Of our two sons with Down Syndrome, only one came home. One passed away. Our girls need us and we need them. Please pray today (World Down Syndrome Day being appropriate) for the foreign government to finally send the paper we need and there are NO mountains we need to climb (Please Lord!). Please pray for an email to come that will ease my heart. (I'm really tired of stalking email.) Please pray for our daughters across the world. Look at a two year old and three year old in your life and just imagine where they are and how, across the world, you have no control over what happens to them. Please pray...hard...and for the financial aspect as well (that our grant can be met). Please stop and pray...and pray tonight...tomorrow....(Okay, so it's heavy on my heart.)

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

So this is it.  These are my thoughts throughout the day.  Please pray with us as well.  We truly need it right now.  

Tomorrow I will write more about Timothy's surgery.  We will be leaving shortly.  I will try to update everyone on here.  Thank you friends.

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