Friday, May 16, 2014

Preparing for God's Journey

March 6, 2012 we received the call to become the parents to a 6 week old baby boy.  He was so beautiful with his dark skin and deep set eyes.  I took one look at him and knew I would go to the ends of the earth to bring him home.  I began dreaming of a little boy with curly hair running around with his three older sisters.

 We began preparing our hearts to do whatever we needed to embrace his culture and race.  We educated ourselves so that we would be ready to tackle any adoption question he would throw at us.  We were prepared for the months of cocooning that felt like eternity.  We knew it would be hard and it was.  What we did not prepare for was a doctor to look us in the eye and tell us our son had severe brain damage.  None of the adoption videos we watched prepared us to be thrown into the medical world where we see nine different specialists and feed our child through a tube.  No paragraph in our adoption book told us to be ready to deal with storing medicine, medical supplies, and large ugly therapy equipment.  We were not prepared.

I continued to get together with my adoption group knowing that I needed the support and a place to vent. I love, value, and need the women in this group.  They have supported and encouraged me in some of the hardest times of adoption.  However;  I found myself leaving the meetings feeling jealousy, anger, and self pity.  I attended an adoption conference that was AMAZING, but every seminar I found myself in just didn't seem to apply.  I would sit through them and hear these voices in my head say....
"Gotcha Day- who cares about his Gotcha Day, he will have no clue what is."
"Race Questions- he can't even see himself in a mirror....he will never know he is a different color than you."
"Birthparents- why worry about this if he will never comprehend what it means to be adopted."

I felt as if I was barely hanging on.  I felt like I was drowning.  How could I be completely honest without someone looking at me like I was horrible.  As I drifted deeper and deeper into a pit of "why me?", God led me to two women who like me were not prepared.  Who like me felt desperation for normalcy.  Who wanted to worry about the right hair products instead of the correct dose of medication to help our child function.  It was a safe place for me to vent, and express my jealousy and frustrations to people who have been there. Recently we went on a weekend together.  It was so uplifting.  We talked about everything from different g tubes, seizure meds, sleeping meds, walkers, therapies, school options, insurance, marriage, family, and God.  We shared out "realistic" dreams for our kids.  While each of our kids is different we understand how desperately each of us desires to see our child progress.  We also know the level of progression will be different and at a different pace.

This brings me to this video of my sweet Kahsay Crawling.  When I posted this I ached for my friends whose daughters are not crawling, let alone sitting up on their own.  I ached because I knew their heart would be so happy for us but would hurt for the things they desperately want their girls to do.  I hated knowing they may have cried tears of joy but also tears of mourning.  I know this because I have felt this.  However they have also taught me it is okay to have these feelings but if we do not look for the joy in our lives and circumstances then we are failing to see God's work in our lives.  He is faithful, constant, true, loving and powerful.  He is fighting for us everyday.  He has a perfect plan for Kahsay, Ruby and Sadie.  They are his beautiful children created and crafted by His hand.  They bring so much joy to our lives that we never could have prepared for.  While Kahsay, Ruby, and Sadie may not fit into the "normal" adoption textbook, I know full well they fit into God's plan perfectly.  They will and already have been life changers in ways I could only dream of. 

In October of 2012 I prepared myself for the worst.  I prepared my heart for a child who would never walk, talk, or eat on his own.  I have learned that when you follow a BIG, I mean REALLY BIG God, He will take you on journeys you never prepared for.  Journeys that will test you and take you to the point of desperation. Journeys  that will far exceed anything you could have dreamed up in your head.   Journeys that will make you realize preparing without His leading is useless.  Preparing for what we expect to happen is important but once we have prepared we need to rest in His hand knowing He has is already figured out.  

Saturday, April 26, 2014

Next Steps

On April 7 we were able to purchase a piece of equipment called the Upsee.  For those of you who do not know what that is you can find a video here.  All special needs equipment is very expensive.  I never dreamed we would order something like this that carries a price tag of $500.  After an aunt sent us a link on Facebook saying we should check it out, a cousin decided to make it possible by starting a fundraising page to help pay for it.  The amount we needed was raised in less than 24 hours and plenty more.  Jason and I were completely humbled by the love and generosity that was show by our family, friends, and even strangers.  We decided to start a separate account for Kahsay.  We will use the extra money we received to pay for upcoming therapy, equipment, or medical supplies that are not covered by insurance.

The Upsee will provide Kahsay the opportunity to stand up and experience the world with his hands.  Right now Kahsay is unable to stand unassisted without using his arms for support.  This makes it hard for him to use his hands and arms to explore.  I am so excited to take him to the Children's Museum and see if he will play in the sand table.  I can't wait for him to stand and touch his sister's faces.  It will be amazing to watch him use his legs to walk around like a normal developing child.  While we have faith that Kahsay will someday walk, we do not know how or when.

So....I now want to thank all of you who made this possible.  Thank you for loving my son and wanting him to experience life like other children.  We will not receive the Upsee until June 2 but I promise when you see the smile on his face when he uses it for the first time, it will be all you need to see to know your donation has made a huge difference in a little boys life.

For those of you who are always telling me Kahsay continues to be in your family prayers I am asking you to continue to pray.  Here are a few specifics:
1.  Pray for weight gain.  While he finally made it up to 19 lbs a few weeks ago, he got sick and is not down to 18 lbs 2 oz.  Again we work hard to slowly gain.  We are switching to a new feeding tube that will lock into place so we can be more successful with a continuous drip all night
2.  Please continue to pray for his mood.  When we are home he is happy and content.  It still can be frustrating to take him in public as he gets easily irritated and hard to handle.  The girls take the brunt of this as we often have to leave events early or not go.
3.  Please also pray as we will be attending feeding therapy again this summer.  We are hoping Kahsay will learn to handle some purees.  There are so many sensory issues along with his diagnosis of dysphagia that get in the way of successful eating for him.  Pray also for me to be disciplined with the home plan and for summer childcare for the girls to fall into place.
Thank you for your continued prayers.  We appreciate them more than you will ever know.

Wednesday, February 26, 2014

Turning 2 and New Traditions

HAPPY  2ND BIRTHDAY KAHSAY!!! You are our miracle!!!  While you have not made our lives easier, you have made our lives better than we could have ever expected.

I will admit birthday #2 was very difficult for me.  I did not expect to feel such joy and loss at the same time.  I am filled with joy when I see where we have come in a year and watch my son find his own joy in life. I love to see his smile and excitement for familiar songs and family member's voices.  I laugh when he thinks he can throw a tantrum in order to not do therapy.  He brings such beauty to our lives.
While I feel such joy, the loss I feel is also very real.  A day after his birthday I wrote to the ladies who have become my support system.  All of them also have adopted children with special needs.  Here is what I wrote:

Kahsay turned 2 on Wednesday. Most days I am able to marvel at his progress and plug along with his daily needs. Today I am struggling and wish he could do the typical 2 year old activities. I wish he would take out all my Tupperware, throw an entire roll of toilet paper in the toilet, throw food on the floor, throw a tantrum in the store because he wants to help mommy push the cart, fight over toys with another toddler, and yes...even eat the tip off a marker or color all over the wall. Today I don't want to fight for insurance to refill his seizure meds or risk going 2 days without. I don't want to count ounces and calories to be sure he is getting enough to maybe gain an ounce after 1 1/2 years of being 18 lbs. i want him to sleep the entire night and not have to pat his butt for 40 minutes so he will fall asleep. I don't want to drive separately to my daughter's soccer game so I can leave when Kahsay becomes over stimulated. And I really don't want to feel guilty today that I didn't work on "therapy" skills. I think the number 2 just makes me realize that "catching" up is not reality. Sob fest done......just needed to get it off my chest.

I know I will forever have grief over the things Kahsay will never experience.  I know these feelings are normal and healthy.  I also know I love Kahsay for Kahsay.  I love that music drives him, I love that he can't sit still for even a minute, I love that he laughs over some of the oddest things,and  I can't get enough of his smile and cuddles at bedtime.  

I also know that a birthday for Kahsay will be celebrated differently than for his sisters.  He does not open presents or even notice they are there.  He can't eat cake or participate in little birthday games. While he may not be able to do typical birthday activities, he can celebrate.  I received great advice from the ladies in my special needs group.  We will give Kahsay his own traditions.  

I am thankful for this little life God has given to us.  I am hopeful that the next year will bring even more progress, and I am humbled to serve a God who provides all we need.

Saturday, January 18, 2014

Long Overdue Update

I realize it has been a long time since I have written any posts about Kahsay's progress. Many people continue to ask us and ask how they can pray for Kahsay.  I find writing it in my blog is the easiest way to update people.  Since I really despise writing I will just do a list format.

1. Group Therapy:  We do this one time per week.  Kahsay is in the infant group because he is not mobile yet and because the chaos of a toddler group would make it extremely hard for him to stay regulated.  We are joined by two amazing therapists and 4-5 other parents with children.  Our focus for Kahsay is solely on teaching him to regulate himself in group settings.  He does not participate in many of the activities but just tries to take in his surroundings and attempt to join in the group activity for short periods.  I am learning so much on how to help Kahsay stay regulated (calm state) when being introduced to over stimulating environments.  He has progressed from crying the entire time to crying on and off.

2.  Home Therapy:  We have a therapist that comes to the house one time per week.  He works with Kahsay in areas of gross motor, fine motor, and self regulation.  He has been a true gift from God and I can't imagine where we would be without his support and love for Kahsay.

3.  Occupational Therapist Grad Student:  We did have an amazing OT student that was coming to help Kahsay one time per week.  It gave me a break and I had the satisfaction that he was in good hands and working on therapy.  She now is doing and internship to finish out her schooling and was moved out of Grand Rapids.  We miss her dearly and will attempt to find another.

Kahsay is still only on liquids with purees only when he is in the mood.  He is on a high calorie Pediasure and drinks it thickened through his bottle or g tube.

I am feeling ready to get him back into feeding therapy or try an intense feeding program where we stay overnight for a few days.  He still has an extremely sensitive gag reflex and hates any food that is textured.

Gross Motor:
1.  Kahsay can:
- Go from laying to sitting
- Go from sitting on a stool to standing with help.
2.  Kahsay is working on:
- trying to hold onto objects in hope he will be able to hold onto a walker.
- weight bearing on his hands so he can learn to creep and crawl which would be so important for walking someday.
3.  Kahsay's goals this year:
-  Go from sitting on the floor to standing
-  Walk with a walker a few steps independently
-  Hopefully creep and crawl.

Kahsay's special seat so he can sit up in shopping carts.  He thinks he is so big in it.

If you are not friends with me on Facebook, I thought I would add this video.  I could not figure out how to get it to load onto Blogger so I just linked it to Facebook.  Hopefully it works.

Kahsay standing.

Fine Motor:
1.  Kahsay can
-  hold some objects in his right hand firmly and bring them to his mouth
- use his left hand as a helper and with more purpose than a year ago.
2.  Kahsay is working on:
- exploring toys on his own.
- holding an object with his left hand
- finding toys on his own when he drops them.
- holding his own bottle.

- Kahsay had eye muscle surgery in November on both eyes.  Recovery was not too terrible.  We have seen some improvement with Kahsay's fine motor.  Since Kahsay is diagnosed with Cordical blindness, eye surgery does not cure his vision impairment.  Due to Kahsay's brain damage, his brain has a difficult time processing what he sees.  His vision can come and go depending on his environment, health or lack of sleep.  We notice at home he sees pretty well, but in environments where there is high stimulation he tends to only see what is right in front of him.  We pray this will continue to improve and work with an amazing specialist and vision therapist to help us.  This can improve but to what extent we do not know yet.

Kahsay just saw the Endocrinologist this week.  He still weighs just over 18 lbs.  He has weighed 18 lbs since October of 2012.  His specialists are concerned with his lack of weight gain and we are working on coming up with more options to help him gain weight.  Kahsay's body does not handle volume very well so adding any more ounces needs to be done over a long period of time. We have tried the night drip through his tube but he is so active it ends up coming out with Pediasure everywhere.   I am extremely frustrated by this.  At this point his height has grown slowly so the doctor does not want to pursue further growth hormone testing but does want to continue to keep tabs on Kahsay.  Please pray we are able to find the best feeding options for Kahsay.  I am not ready to give up his oral feedings but am willing to do so if the doctors feel feeding him through the g tube only will be our best option.  Maybe if he would stop moving for one second he would finally gain weight :).

Right now his seizures are under control with his medication.  We will have to have EEG's periodically but right now we have not seen any seizures.

As a family we can't imagine life without our little man.  He has definitely changed our lives.  His sisters still fight over him and everywhere we go people can't get enough of him.  Most of the time I do very well living in the present and just praising God for the progress we see.  If I am honest some days I over focus on the future and wonder how our life will look.  I can get caught up in the fact that we will need a babysitter for Kahsay the rest of his life.  He most likely will not ever be able to walk up a sledding hill by himself.  He may never know what a sunset looks like. We may never teach him to ride a two wheel bike or dive off the diving board.  He may never enjoy his sister's favorite meal of steak.  Will he be able to "hang" with kids his age and play creatively?  Will we need to make adjustments to our home that are handicap accessible?  When we have family game night, what will Kahsay's participation be?  When will he be able to handle being in large group settings without being overwhelmed?  And the list goes on and on.....  I know these are feelings I have to work through, and some of them may not even come to fruition.  Jason and I constantly remind ourselves that we serve a God that knows the answers to all of these.  His ways are higher so why even worry.

There.....long overdue progress report done!  Who knows when the next one will be :).