Saturday, September 14, 2013

A Blessed Life with Ben...Update

It has been almost exactly three months since these boys became brothers in person.

Three months since the drug withdraw came to a close and we met this.

Three months ago EXACTLY since we got permission to bring him home.

The battle we faced seems a little more distant each day, though it will be awhile before we can think about it easily, peacefully, without pain. 


As you've read, we've  been a little busy.  Every week we average two appointments a week and we haven't started therapies 

Our life is crazy fun and awesome!

Ben's sleep study returned the results of mild to moderate sleep apnea.  To start with the recommendation is to remove his tonsils and adenoids. 

The ENT also found that he has hearing loss and they will be putting tubes in his ears to drain fluid and doing a more extensive hearing test.  He may need hearing aids.  We should find out the results right after surgery.  To explain a little further, the line (on paper) for part of his hearing test should look like the roof of a house (and upside down V) was completely straight across.

His dental surgery is scheduled for October 30th where they will remove all his baby teeth (due to the rot from the severe neglect) and will attempt to save 6-8 teeth (adult).  They won't know until they are in there.  They will also do a cardiac echo while he's sedated.

It is only after the cardiac echo (needed due to a blip seen in the EKG) that the tonsils, adenoids, and extensive hearing test can be done.

We are also struggling with keeping weight on Ben.  We don't know if it may just because he's just so much more active.  It's only a little weight loss, then gain, then loss.  It varies about 2-3 lbs.  We took care of the loss with generic Pediasure...but that led to extreme diapering.  He can't handle much in the way of milk products and we tend to stay away from it.  We have a Nutritionist, but she seems pleased with how we are handling things.

Appointments coming up???

*Genetics~ Next Week
*Disability Clinic~ November (first available date)~They will start recommending therapies at that point.
*Ophthalmologist- Not yet scheduled (checking on insurance)~We feel we need to be thorough with his unknown history.

Am I forgetting something...probably...but offhand, this is it.  Again, every appointment seems to lead to two others.

I know so many of you have been praying.  We thank you so much for that. 

Ben himself, a blessing from our Heavenly Father, does the attachment and behavior dance.  Three step forward, two steps back, one step forward, three steps back, five steps forward, one step back....we always end up ahead in the long run. 

Some days are wonderful.  Some days are hard.  Some days are both.

This week was a week of accelerating behaviors.  It wasn't easy.  We believe it's because his schedule changed with the starting home school.  He's been waking up and seeking negative attention from the time he gets out of bed.   He has started shoving, which is a new behavior.  The hardest part is truthfully the struggle with proper emotion.  The laughter when he's doing what he's not supposed to do and you "talk" to him.  We see glimpses of proper emotion and it's beautiful.

He accidentally punched me in the eye the other day.  A blanket was stuck, he was pulling it, and his hand let go (slipped off).  I was in back of him.  It was extremely painful and I moved Ben away.  Tears filled his eyes as he knew he hurt me.  Seriously awesome (though it may not sound that way)....proper emotion.

He does not get what we call "manic" much anymore (manic laughing mainly).  Not really manic anyway...he has figured out with his negative attention seeking (which is most likely the ONLY way he got attention in the last 10 years) that he gets a reaction when he does the laugh (not a real laugh...almost a crazed laugh).  We have been reprogramming ourselves not to react and it's been slowly going away.

His improvements are wonderful though.  He will walk around holding hands with his little siblings.  He again played with a little car, extending the time to playing with it for a minute (remember he doesn't know how to play).  He signed his version of "daddy" for the first time yesterday.  He got frustrated when he was signing "Mama" and said it....only one time, but it was clear.  He voluntarily colored for another minute. 

I think it was described best by one of his siblings, "Mom, he is such a blessing, 100% my brother, and fits in our family perfectly, but it really is like Ben equals all six of the younger kids.  Actually, they're easier."

It's not a negative statement.  It's just reality for a sweet, loving, dancing boy who lived in neglect and isolation for ten years.  No sugar in healing and fighting for it.

As we continue on in the journey to healing...still people ask what they can do....what our physical needs are.

We have found that we currently need a couple of things for Ben to make things easier. 

Many of our friends have been so supportive.  One is even teaching the middles History this year.   The kids LOVE it!

IF you have been one of those that are asking, here is our current list of physical needs though and thank you.

*A video (with audio) monitor for Ben (used is wonderful as well).  With home school starting I will need to put him down to sleep in a room I am not in.  He is a precious two year old in a four year old body, that is actually ten.  We can't put him in a crib.  He suffered in a crib for seven years of his life...neglected...kept small.  Thus we need to be able to visually see him when we need to lay him down in another room.
*A booster that attaches to a normal chair and has a seat belt (again, we celebrate used!).  To function easier, I need to be able to do basic things in other areas of the house that ARE baby proofed, but since he doesn't know how to play he can break and destroy easily.  This will enable me to put him at the table with some bananas to mash and play with.
Something like this with a weight and size a little higher.
*A bed rail (Used? YES!)~ His bed is currently against ours and since he does not sleep well and is fitful when he does, we are not sleeping.  Which, for a mommy with nine in the house, is not conducive to me sleeping.  Every time he moves, we feel it.  I wake with a foot in my face.  I'm glad we did it this way, but it's time to move his bed away from ours.  We always keep our children with us in our room for six months to bypass (or comfort easily) common night terrors and to increase bonding.  (One of my dear friends already has called and has two used ones! SOOO thankful!)
*We have also placed a PayPal button to the side of our blog for those that may want to help with quickly rising medical costs.  We have medical insurance, but his procedures and tests still are expensive and the parts we pay are adding up quickly.  This will be primarily for Ben's medical needs/bills (a few hundred at this point not including the two surgeries coming procedure partially paid for/teeth but not echo), but will also cover the week we have to go to the hospital with Jael where she learns to walk on her prosthetics.  The drives are long and the meal costs for two meals for both of us add up.  We will have a room there, but come home at night.  It is not a traditional room and food is not covered.

I think right now, this is about the most thorough update I can do right now.  One of our other loves is facing some rough stuff right now (as well as our friend's love).  We appreciate any prayers. Also, please keep a special family in your prayers.  "R" just gave birth and she and her newborn are both in ICU and fighting for their lives.  They need continued and immediate prayers.

Have a blessed day friends.

"Rejoice always, pray continually, give thanks in all circumstances; for this is God’s will for you in Christ Jesus." I Thessalonians 5:16-18

Prayer Requests for Our Family and Others

Ben has hit a wall with learning NOT to do a couple of behaviors.  We would appreciate prayers for a break through.  It has been rough as of late, worth it...but rough.  Please also pray for a somewhat painful heart issue that has recently taken place.  Please pray for God's wisdom and guidance.

Ben~At Home:
That he continues to seek love, attaches, and finds a healthy stranger anxiety.  That he learns to stop aggression to himself and others.  That he learns the value of listening to mommy and daddy.  This is so important for safety.  Finally, that he learns to play with toys (imaginative play) and be a child that he has never had a chance to be.

Thomas and I:
For my healing emotionally and for health...for patience and peace to be more consistent within my body and spirit.  For Thomas and I to retain and utilize some more therapeutic techniques in our parenting. For Thomas to feel rested/strength and for his professional life to be blessed.  For a private prayer request on my heart IF God wills.

The Family:
Please pray for each child's emotional, physical, and spiritual health AND PROTECTION.  Please pray we find a new and hopeful "normal". Please continue to pray for a vehicle (or a way for a vehicle) to present itself  and finances.  We are blessed beyond many in this world...but (as with many) sometimes things happen where expenses are all at once.  We just don't see a way, but know God does.

Prayer for the Future
Our house needs to be fixed (foundation and roof) and has for awhile.  Other things have taken priority (our children coming  They need to be fixed.  We also hope/pray (IF God wills) someday to expand (possibly convert the garage) in order to have the room if God calls us again.   We don't want new or perfect, just room IF God wills. 

Prayers for Others
Please forgive us if your prayer request is not listed.  We may not be sure if you wish us to share it.  Please shoot us an email and let us know!

*Please pray for a precious friend of mine (the "A" family).  Their newest blessing has some serious medical issues and they could use prayers for discernment and for the medication to work without the side effects. This is all I am able to share right now, but please petition God on their behalf.  He knows who they are. 

*Please pray for Selah, who had a very serious stroller accident.  Please join us in storming Heaven for a miracle of complete healing.  Please also pray for peace that passes understanding for her family.
*Please pray for Tommy, a tiny 15 year old from Eastern Europe.  He is very special needs and has only recently come home. 

*Please pray for Eden, a little blessing from Ethiopia, who has a life threatening disorder.

*Please pray for Henry, Teresa, Joey, and Rex's families as these precious ones went to be with Jesus within this last year. 

*Please pray for a friend's wife from college.  Her cancer has returned.  Please pray for "S" and the "N" family.

*Please pray for my friend "L".  She has dealt with some extremely hard and painful stuff with a family member (really ugly) and this family member has been diagnosed with cancer.  Please pray for her as she travels this hard road.

*Please continue to pray for Ruby, Jeremiah, Katie, Carrington, Selah, Daniel, and Wes.  These little ones came into their families with health difficulties (this is an understatement).  A few were caused by severe situations of neglect or malnourishment (or both). 

*Please pray for our friends the “K” family who is struggling with attachment and other situations.

*Please pray for my friend Jodi (and family) as they have grown by two precious boys recently.  Please pray for their health and for heath situations with all their blessings.

*Please pray for Eliz and her family as they transition with their many new blessings.  Also for her grown children and their healing as well.
*Please pray for Gena (and family) and their teen son. Please pray for him to come to know CHRIST.

*Please pray for the "S", "P", and "D" family.  Members of their families are fighting for their lives against drug addiction.

*Please pray for young Emma as she has recently moved to Uganda to minister to those beloved children of God and now has a precious son through the blessing of adoption.

*Please pray for Molly and her family as they seek a precious one from the "U".  Please pray for the process to be smooth.  Please pray for their son, their family, and the finances as they continue.

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