Monday, January 26, 2015

Emi and Misha - prayers please

Tomorrow morning Emi and Misha have an appointment with the ortho peds surgeon.  Misha is supposed to begin casting for his clubbed feet.  He's going to be a bit miffed since he's so active. I'm happy that nothing invasive should need to be done.  Emily is to be assessed by the surgeon to see what can be done to help her. 


Emily, who came home under the diagnosis of Arthrogryposis, actually has Sacral Agenesis. This means that part of her spine, the sacrum, is completely missing.  It causes her hip bones to rest upon one another, rather than the sacrum, and her hips are dislocated meaning the top of her legs are not in the hip sockets.  Her knees are also stiff and her feet are clubbed.  When we saw the ortho pediatrician we were not given much hope of fixing her feet, knees or hips.  He said her hips would probably just slip back out of the sockets.  If her knees were released so that they bend and then they became stiff in the bent position, she would not be able to walk.  If they do not release her knees so that they bend, they cannot cast her feet to fix the clubbing since the cast/legs have to be in the bent knee position to cast the feet correctly. 


If you're reading all this and your heart just skipped a beat, imagine how I felt while holding these two precious bundles when the doc told me all of this.  I was devastated.  My heart broke for her and what could be her future.  I cried then and many times over the few days after we got this diagnosis. But it's been a couple weeks now and each day she continues to be such a joy.  They all are.  God has blessed us with some amazing children.  Did I mention that Emily is already talking in three word sentences in English!  She's amazing.  The appointment tomorrow will be a consult.  We will then take this information to Shriners to get their opinion.  We have an appointment with them February 20th. 


I've said all that to say this, please pray for us/them through all this.  I believe God has amazing things in store of our kids, all of them, no matter how that presents itself. 


Thanks!
Kel




Sunday, January 4, 2015

This One

Many of you remember her as "Aubree" from the Reece's Rainbow website.  We fondly call her Lyra which means music, and if you know our family, you know that her name is very appropriate.




When we first began to pray about adopting Lyra, all we knew was she had a diagnosis of Arthrogryposis and "moderate mental delays"; however, a video we saw of her made us wonder if there wasn't something more going on.  She seemed to have some spasticity in her limbs and difficulty talking especially when excited.  We were also privileged to see a videoed interview of her asking about what she wanted in a family, what her likes and dislikes where, her favorite color etc.  In this interview, the interpreter, someone who knows and loves her, said she was much smarter than her speech would indicate.  Since brining her home, we agree.

Lyra has been learning very quickly and although she still has a difficult time articulating her words, she is picking up English quickly as well as American Sign Language.  The later she uses when she's unable to get a word out, like "thirsty".  Although she never had the privilege of going to school until she came home, she loves school, participates well and is picking up everything very quickly.  Unfortunately though her lack of education, special needs and that she is already 15 makes the possibility of her catching up to her peers bleak.  However! It can be done.

Lyra has until the age of 21 to graduate with a diploma from the public school system.  That gives her 6.5 years to complete 13 years of schooling.  We have decided that this year she will stay in the special needs class and we will work on language immersion and early education.  Next year it is our goal to mainstream her in a classroom of her peers.  Somehow, someway, we can do this.  Right now her education plan states she will receive a "certificate" which means she would not graduate, and then go on to classes for adults with special needs.  Jode and I feel she is able to graduate, given the chance, and go on to college.  She deserves this opportunity. 

So wherever you are around the world reading this blog, please say a pray for her, and us, and all those in the education system who will rally behind her to make this happen.  We know she has a "long row to hoe" as we say here in the South, but we serve a Mighty God for whom nothing is impossible. 

Thank you for your prayers!
Lyra's parents

Tuesday, December 9, 2014

Three Little Pumpkins - One year home

Hard to believe this month will be one year home for us with Leza, Nico and Misha.  In ways it's been a crazy year but in others really rather calm considering.  We've not made as much progress as I had hoped, but we have progressed from where they were when we came home last Dec. 

For instance, take Leza.  I had really hoped to be able to communicate with her more.  She's still basically nonverbal, and honestly she may well be for a long time.  I hope and pray not, but the reality is, you can't undo 4 years with little to no therapy over night.  That being said, she has made great strides figuratively and literally.  When she came home she could neither feed herself or walk without assistance.  She can now use a fork and spoon, she can chew her food, something she did not do when she came home, and she can walk fairly well.  We do think some of her delays are due to strabismus, or crossed eyes, and that the knee cap on her left leg will slip completely off to either side of her knee making her gate somewhat awkward.  Both her eyes and her knee are now being considered for surgery since glasses and physical therapy have remedied neither.  She just had a well baby checkup and the doctor reports that she is growing well and looks great!

Nico too has grown quite a bit since coming home.  He was 17 pounds last year and he's now 25 pounds.  He's gone from size 6-12 months to size 18-24 months.  He's leaning sign language and can sign "more please" and "thirsty".  His only consistent spoken word is "eat" and the boy does love his food.  Although Nico can feed himself and chew, he has a hard time keeping the food in his mouth when he's chewing.  We recently requested feeding therapy for him and speech for him and Leza.  We're hopeful that it will help.  Since coming home Nico too has learned to walk.  He does really well. 

Misha has grown by leaps and bounds.  For a baby who could not crawl, walk or feed himself one year ago, Misha has amazed us all.  He can now run, climb up the 5 foot ladder to our playground fort, hold his own cup and feed himself with little assistance.  His arms and hands continue to be strengthened and more mobile.  His core strength is amazing, and I do believe he could be a gymnast with the ability and agility he demonstrates.  Although his vocabulary is not as developed as I had hoped, he does understand everything we tell him.  He is currently getting PT and OT once a week, and we're hoping to add speech therapy to help him catch up developmentally.  Misha is also scheduled to go to Shriners Hospital in February.  He's going to need to have his feet, which are clubbed (yes he's running on clubbed feet!) fixed either through surgery or serial casting.  I'm hoping for the later.  His right wrist and elbow will also need to be straightened and I'm hoping that too can be done in the least invasive manner.  We shall see. 

So, we really have made great strides although they do not appear as I originally imagined.  God has a plan and He's in control.  I trust Him to put all the details in place and as you can see in the picture below, part of the plan was to bring home two more girls.  But that's anther post to be updated at a future date =)






Thursday, August 14, 2014

Here We Grow Again!

Hi all, Yes, you read that right.  The Robinson family is growing again!
I've tried to add pictures of our beautiful darlings to this page, but blogger is not cooperating.


Here's a link to our Family Sponsorship Page (FSP) on Reece's Rainbow which will show you just how gorgeous they are.


Both of the girls we committed to this time have the same diagnosis as Misha and if you've met him, you know just how inspiring he is.  His accomplishments have encouraged us to pursue Aubree and Laelia.  Although they do have Arthrogryposis, the manifestation of it in their bodies is different than his. 

"Laelia", who is almost 2 years old, is only affected in her legs. We will not know to what extent until we meet her and get her to a specialist.  We are told that she is "a very beautiful and smart girl, affectionate and well behaved" by those who have met her.  Of course "Laelia" is her pseudonym and the name we have selected for her will be announced once we have passed court. 

"Aubree", who just turned 15, is affected slightly in her arms and more severely in her legs; however, her upper body is very strong.  She is currently in a wheelchair but has expressed the desire to walk.  We are hoping that once she is home, the specialists will be able to help her realize that dream.  Because she has been listed on the Reece's Rainbow website for so long, and in an orphanage for so long, many have met and fallen in love with her.  We will be keeping her given name, adding a middle name, and will let all know what it is once we have passed court.  You can read more about her here. 


We are very blessed and very excited.  Thank you for your prayers, encouragement and support through this journey.


Blessings!
Jode and Kelley


PS - we have a $500 matching grant going on right now.  Every dollar donated to our FSP, also linked above, will be doubled up to $500.  Our FSP needs to read $2251.99 to meet this goal.  Please share, pray and donate!  Thank you!








Sunday, August 3, 2014

Be Slow to Speak


I’ve been taking a poll as to how many other adoptive parents feel the same way I do before I said anything.  I wanted to make sure it wasn’t just me being over sensitive.  In chatting with many I have come to the conclusion it’s not.  So, I’m going to put this out there.
Please think before you speak about and around my children.   I’ve heard many statements in front of my kids, or within ear short, which are hurtful. 

For instance, “I’m just going to take this one home with me.” 

Now why would you say that?  Yes, they are cute, but you must have no clue what sort of trauma an adopted child may have gone through, some in several homes before finally being adopted, some abandoned in orphanages for many years and now you want to add to their already, possible, insecurity by making them wonder if someone else is going to take them yet again?  And even if the adorable little one you have in your arms is too young to understand what you’re saying, his/her older sibling is probably close by and is now worried that someone will “just take him” or his/her baby brother or sister.  After all, Mommy and Daddy just brought them home.  You also must have no clue how much time, tears, persistence, prayer, paperwork, patience and money it takes to complete an adoption.  There’s no “just taking” anything. 
And then there’s this one.  “How can you do that at your age?” 

Really?  Do I look like I have one foot in the grave?  Honestly, I can better do this at my age now, than I could have 20 years ago.  I have a lot more parental experience and much more patience.  It also floors me that anyone would think that caring for our children is difficult.  Until just recently, I was an international business woman, managing many projects across many countries, to include the personnel, all at once.  Believe me, taking care of my children is a breeze.
And what about this one?  “Do you have help with them?”

Why? Help because they do . . . what?  I know many, now days, who think six children are a lot, but it wasn’t too many generation ago that multiple children, meaning more than the 2.5 average, was normal.  This is our choice, and what we feel God has called us to do.  If it’s not yours, then more power to you.  Like David said to King Saul, I can’t wear your armor.  What God has called us to, He has also equipped us to do.  It’s my opinion that you’re the one who is missing out on the fun.  We believe the more the merrier!

I was also told of a statement made around my children, while they were standing there, in regards to their being adopted and another child being a bio-kid.  Please don’t do that.  God knew our kids before they were born, and whether bio or adopted, he knew they were to be ours.  He created them just for us.  They are no more or less part of the family because of their adoption.  Are you any less a child of God due to your adoption into the family of God?
I have many more statements from people which have made me wince and scared my kids, but I won’t write them here.  Suffice it to say that you really need to think before you speak in all cases, but especially around my kids.  Believe me when I say, and some of you have heard this, those are fighting words.  I’d hate to have to go all Momma Bear on ya! ;-)

James 1:19 says we should be quick to listen and slow to speak.  Listen to your inner self. If it would hurt your feelings, don’t you think it hurts me/my children too?
I’ll get off my soapbox now.

Blessings,
Kel

Sunday, June 8, 2014

Visual Adjustment

Have you ever run into someone you've not seen in awhile and although you knew they looked familiar, it wasn't until they reintroduced themselves that your visual of them shifted and the old picture in your mind's eyes was replaced by the now version of how they really look?  I think that's how adoption is.  You go into it with ideas, visions, of how you think things are going to be, but at some point, you have to adjust those visions to reality.

Many parents think they are going to pick up there child and instantly be in love with that child, but in fact, although we love them with the love of God, sometimes the parents may not even like the child.  I know! <gasp> That's just awful, but let's face it, sitting up at 4 in the morning with little Johnnie or Susie can tax even the most patient of parents.  We get frustrated with the child, and frustrated with ourselves.  We think we're awful parents because how could someone not love this child, but in reality, it's normal.  Given time we can grow to love the child and them us.  We are prefect strangers usually. 

So parents don't berate yourselves when your precious little pumpkin seems more like a little stranger, a little stinker of a stranger at that.  Give yourself and your new youngin' some slack and realize that relationships take time to build.  Adjust your vision of how you thought things were to match how they are.  It may not be the reality you envisioned, but it may be better than you could ever have imagined!

Thursday, March 20, 2014

Our Little Princess Part II

Today we got an amazing report on Leza's health the magnitude of which cannot be understood unless one knows the whole story.
 
When we committed to Leza we only knew that she 
had heart surgery and Down syndrome.  We didn't know how cute she was because the pictures we had did not show her face.  She is beautiful. We found out some of her diagnosis when we got to our first appointment at which time we were told that she had gastro surgery at some point, no one was quite sure about that, and that she's had open heart surgery. It wasn't until we met with her doctor at the orphanage that we got the rest of the story.
 
Prior to ones meeting with a child, the parents are told as much about the child's medical and social history as is known.  We learned our first day that she was born without her colon being completely developed and that right after she was born she had surgery to correct it.  Then when she was 2 she had another surgery, and a colostomy due to some complications.  The colostomy was repaired and she has been fine every since.  Her heart had two holes in it.  The upper one repaired itself over time, but the lower one required surgery.  The surgery was successful, but Leza was also diagnosed with congestive heart failure. 
 
Heart failure does not mean the heart has stopped working. Rather, it means that the heart's pumping power is weaker than normal. With heart failure, blood moves through the heart and body at a slower rate, and pressure in the heart increases. As a result, the heart cannot pump enough oxygen and nutrients to meet the body's needs. The chambers of the heart may respond by stretching to hold more blood to pump through the body or by becoming stiff and thickened. This helps to keep the blood moving, but the heart muscle walls may eventually weaken and become unable to pump as efficiently. As a result, the kidneys may respond by causing the body to retain fluid (water) and salt. If fluid builds up in the arms, legs, ankles, feet, lungs, or other organs, the body becomes congested, and congestive heart failure is the term used to describe the condition.  Because of this, Leza was on medication that for all intent and purposes, she would most likely have to take the rest of her life.  However, God
 
Today we were told that Leza could come off her medication!  She no longer has this diagnosis and her heart looks wonderful.  Do I believe it's a miracle? You're darn tootin'!  Could the original Dx have been wrong?  Maybe, but not likely knowing the doctors who attended her prior to her adoption.  We serve a BIG God for whom nothing is impossible.  All glory and honor go to Him!  Amen!