Saturday, November 5, 2016

Timothy

This little man...public speaker...preacher...song leader...is a joy.  He talks from the MOMENT he wakes up until the moment he goes to bed.  I think that those that are not around him daily may think he's not fluent in English.  He very much is, but he just doesn't have enough words to talk constantly for the whole day...so will fill it in with baby talk.


His favorite word right now, used often as a verb, is Sarah.  Cracks us up...

He also has a stubborn side.  Oh yes...this adorable little silly boy does.  He does NOT like to be told no.  I'll give you that not many people do, but he REALLY does not...chuckle.


Fear is still very much a part of Timothy's life.  I think most of the time, after six months home, he believes we are forever.  His fear manifests itself at night though and at meal times.

It makes sense.  He won't go to sleep until someone is also in the room with him going to sleep...namely me.  It doesn't matter if it's midnight, he WILL.NOT.SLEEP.  Our guess is night was a fearful time for him when in the orphanage.  It will just take time for him to get past it.  He was in the orphanage for almost four years of his life and has only been home just over six months.

When it comes to food, he is still afraid he will not get enough (which is very much orphanage behavior).   We cannot let him watch us prepare food, because he will (at times) cry and obsess if he sits watching.  It's almost like it's a bit too much for him.  He had to be hungry for a long time.  He is growing though.  Our four and a half year old came home in 18 month clothing and around 24 lbs.  He is now in 24 month to 2T clothes and has gained AT LEAST two lbs in six months.

The kids listening intently
to Daddy during devotional time.

We have only begun Timothy's medical journey, like barely cracked the surface.  There are many things ahead that we are just starting.  We have mainly focused on the Orthopedic side of things for Timothy.  That will change this coming week.  He's had all the blood, basic work up. and developmental screening (when newly home), but we suspect there is a lot more.

He may need to see a geneticist.  We very possibly may need to see several specialists we have yet to.

As you know, Timothy was diagnosed with Arthrogryposis quickly upon arriving home.  While Timothy's in country file stated only an issue with his feet, we all saw more in our precious one instantly.  We are just SO thankful he is home.

He will have AT LEAST three surgeries.
1. His Wrist~His wrist will not straighten out completely.  The surgeon will take a very small pie shaped wedge out of his wrist to bring it to a more natural position and increase flexibility.
2. His Hips~ Both of Timothy's hips are out of socket.  Initially they were not considering putting in his hips locally. The doctors didn't feel initially it was the right choice.  History has shown that the older the child is when hips are put back in socket, the more damage could possibly be done.  His hip sockets are wonderful (we've been told) though.  Just recently a doctor here has said he would absolutely do it.  Initially we only knew of one doctor, one of the most sought out doctors (in the world) for Arthrogryposis who would do this surgery (in PA).
3.  His Feet- His feet are now the biggest question mark.  He has severe clubbed feet.  If they were taken care of as a baby, he wouldn't be facing what he is now.  This is NOT a slam on an orphanage.  Often they just don't have the funds and life itself must be the priority.  Our local doctors (many have been consulted) are still leaning toward amputation, BUT they want us to see the specialist in Pennsylvania to see if he has any other ideas first.  We LOVE this.  We LOVE that doctors that have NO affiliation with the other doctor want what's best for our son.
Thought Process About Amputation- Timothy, if we don't go the route of amputation, may have to have repeat surgeries with no guarantee of success.  He may actually have more pain as an adult even.  Also, he is so tiny that certain surgeries cannot be done with his size.  With amputation of his feet, the results are pretty typical.  Most likely there would be no pain and prosthesis  that could have him running and jumping fairly quickly.  We want what's best for him, but that's not always as straight forward as we would hope.

We have no idea when these surgeries will be, but his hips may possibly be put in socket in January.  We should should have more idea about the wrist surgery next week.

We head to Philadelphia in December to see THE doctor.  I say that because when we were talking to parents of children with Arthrogryposis, they ALL named this doctor.   There is a two year (from what I am just now hearing) wait list  for this doctor now.  God blessed us with an encounter with this doctor and a, not of this world, speedy appointment.  We especially need to see his thoughts on Timothy's feet.

This is where it gets a bit complicated though.  This is where we need prayer.  We do NOT have this figured out and it's in around six weeks, two weeks before Christmas, we head to Philadelphia .

We have applied and been accepted for free medical flights (as of last week).  We only need to turn in one more form from a local doctor and they will pay for the flight there.  Seriously, I did not even know these organizations existed.  This blows us away.  What a gift!!!

We have also made a room request at the Ronald McDonald house.  They are awesome!  They ask for a room donation of $15 a night (only if possible...how crazy is that?!).  If you haven't stayed there you may not understand it's not like a true reservation.  It is only a room request.  You don't find out until the morning that you leave whether you got in or not.  You have to have a backup plan.  So, where you may pay $75 for five nights at the Ronald McDonald house...you instead would need $63 x 5 a night at another hotel ($315).  Yup, that's a big difference...one we have to plan for and don't exactly have offhand.

We also have no transportation while we are there.  Because of the times of Timothy's appointment, a shuttle is not going to be possible at least one way (IF we get into the Ronald McDonald house).  We are also there over a weekend (a Thursday night until a Tuesday morning).  We have no clue how much transportation will cost, but will be calling to see what it costs to rent a car.  You see how expensive this is getting.  Ugg!

God opened doors though.  We know HE will lay things out before us.

(Side note: We have two other appointments in January at the same hospital in PA with the same specialist.  We don't know if we will need them, but they scheduled them just in case.  This doctor is VERY hard to get into and you have to schedule ahead of time.  The second appointment would be the same length of time and the 3rd would be for surgery on his hips and possibly 10 days long.  We MAY do all surgeries here though...not in PA....depending on several things and advice the doctor gives.)

We now will look only at the appointment ahead, in six weeks.  Please pray for the funds to cover the possibles and the definite needs (hotel/possible, transportation/definite need).  We know we will just put extra (if we get into the Ronald McDonald house) in Timothy's medical fund, but we don't know where to seek aid from.  A local organization we went to only aids if the hospital is in state or a neighboring state.  Do you all have any thoughts?  We appreciate prayers at this point...for direction...for the funds.  We are guessing, maybe, around $700.  I'm hoping that's WAY high (and that we get into the RMH).  Can you pray for $700 (or the exact amount that God knows we need)? Maybe there is an organization we have yet to hear about and pray He directs us to this?

We really appreciate the prayer.

On a wonderful note, Jael's wheelchair deposit has been taken care of through our body of Christ here on earth, a sister who loves our family.  It took my breath away.  I have been very humbled through our journey right now.  Our needs just seem crazy unusual (even for us...lol) and all at once.  It has been a big "must have faith" time right now.  God has led us in each of these things, so we trust him...close our eyes...and know he will carry us as we cross this Grand Canyon.

"Who is it that overcomes the world? Only the one who believes that Jesus is the Son of God." 1 John 5:5

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Immanent Prayer Request:   
*Sarah is starting to feel better from the virus.  It looks like in addition to that she was cross contaminated with gluten AND had surface contamination.  You may remember that she has Celiac Disease and gluten can cause seizure (NO sign of that this time at all...smile) and surface contamination can cause numbness and issues externally too.  Can you please continue to pray for her health and the health of baby Isabella?  
*Can you please pray for $700 for this trip across the country in six weeks (or whatever the exact amount God knows we need)?  Could you pray for direction, if we are to
go to an organization for help?  Thank you!

Our Prayer Requests:
*Please pray for our continued adoption journey.  Please pray protection over our family and the ever expanding number of children (here and across the world).  The master of lies loves to mess with anyone trying to follow God.
*Please pray for a financial way.  Continue funds for the adoption and many unusual expenses that happen...some only every five years.  They just happen to have happened all at once during back to back adoptions.  We are taking a deep breath and trusting God. 
*Please pray for our beautiful pregnant daughters  (one is a daughter-in-love, but I love her like one) and one precious extended family member who is expecting.  Our daughter Sarah is due any day and they have a lot of things they are trying to figure out. Please pray for discernment, direction, and blessing for Sarah and Ivan.   Please pray for all three of the babies and their health...and health of the mommies.
*Please pray we GLORIFY GOD in ALL THINGS.  This is the most important. 

Our Friends:
*PLEASE pray for a young teen named Alyssa.  She has brain cancer and has had many brain surgeries at this point.  They just found cancer at the base of her spine.  PLEASE pray for healing.  (She is the daughter of two friends from college.)  Please also pray for her family.
*Please pray for my husband's friend at work.  He lost his mother-in-law two weeks ago. (The Windom family)
*Please pray for my friend Elizabeth, as she they have found cancer on her foot.  Please also pray for insurance to approve this quickly!
*Please pray for K and G.  They have just lost their precious baby.

PRAISE:
*God has answered our prayers and this last Monday we were able to complete another big step in our adoption.
*God has answered our prayers for the next funds due for the adoption (due within two weeks)
*God answered the prayers for the deposit on Jael's wheelchair.  It left me speechless and in tears.  

Know if I'm praying for you, I have not forgotten.  If I don't have your permission to put it here I won't in order to make sure it is only shared if you would like us to.


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