Shout It From the Mountaintop!!!!!!

How do I even begin to put into words the pure joy I have felt the past few days.  KAHSAY IS WALKING!!!!  I had no idea if I would ever be able to say these words.  In October of 2012, we were given little hope that we could expect Kahsay to walk.  His MRI was extremely unique and the areas the damage effected would have great impact on his development in all areas.  While we always held tight to fact that we serve a GREAT BIG GOD, we still proceeded with caution. I often questioned how to live life with the confidence that God can perform miracles, but at the same time living in the reality that something I so desperately desired may not be in God's plan for Kahsay.  All I can say is God gave me a peace that I can't explain.  It was OK.  I trusted.  I was gonna be ok even if Kahsay never walked.  It was well with my soul.  I rejoiced in his progress and praised God for miracle after miracle in Kahsay's life.   

And then it happened...........with no warning.............God moved mountains!!!!  I guess I thought I would have been prepared.  He had been walking with his walker for some time, but was still unable to stand on his own.  He hated using the walkers provided by school because he did not like to use his hands.  I knew he had to use his hands in order to walk.  That particular moment I was trying to videotape him attempting to stand and jump. I had no idea God was going to perform the most amazing miracle I could imagine at that moment.  It seriously felt like God waved his magic wand and "poof" Kahsay could walk.  I can't explain the overwhelming joy, and excitement I felt (as you can tell from my high pitched annoying screams and then blubbering sobs).  

I am not kidding when I say I wish I could have shouted from the mountaintops that we serve a God that is bigger than any mountain we face.   I recently saw a quote that read "Sometimes God moves our mountains, and sometimes God says take another lap".  It reminds me of the lyrics to the song "It is Well- Through it all"

Here is the link to the video. You have to listen to it!!!

Verse 1

Grander earth has quaked before
Moved by the sound of His voice
Seas that are shaken and stirred
Can be calmed and broken for my regard

Chorus
Through it all, through it all
My eyes are on You
Through it all, through it all
It is well

Through it all, through it all
My eyes are on You
It is well with me

Verse 2
Far be it from me to not believe
Even when my eyes can't see

And this mountain that's in front of me
Will be thrown into the midst of the sea

Chorus
Through it all, through it all
My eyes are on You
Through it all, through it all
It is well

Bridge
So let go my soul and trust in Him
The waves and wind still know His name

It is well with my soul
It is well with my soul
It is well with my soul
It is well with my soul

It is well it is well with my soul 

Through it all, through it all
My eyes are on You Lord
Through it all, through it all
It is well with me.

The times in my life when I have struggled the most with the mountains God has placed in my and other's lives is when I have taken my eyes off him.  My deepest moments of darkness were when Kahsay first came home and we were thrown into the storms of the medical/therapy world.  I allowed my mountains to swallow me because I took my eyes off of Him.  God will never leave us to deal with our mountains on our own.  He will either hold our hands every lap or dance with us when he moves the mountain.  How do we have the confidence God can move mountains yet live in the reality that sometimes it is not in His plan?  We keep our eyes on Him.  Only He can fill you with a peace that will allow you to testify "it is well, with my soul".  

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.  

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.

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.

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.

Therapies
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.

Feeding:
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.

Vision:
- 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.

Growth:
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 :).

Seizures:
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 :).





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Did You Know?

DID YOU KNOW?

This is the question that makes me cringe every time.  I usually do everything I can to avoid being asked this question.  When I am asked, I usually answer with a quick, "no", and try to change subjects. I hate this question because I fear my answer will scare people away from adoption.  I hate this question because, I do not want anyone to ever think we are disappointed.

 Did we know Kahsay suffered a stroke in utero?  Did we know our child would carry the diagnonses of cerebral palsy, seizure disorder, dysphagia, cordical blindness, microcephaly, developmental delay, and so on.  Did we know our child would have a feeding tube and be able to qualify for many services due to his special needs?  Did we know our child would see 9 different specialists, attend numerous therapies, and have a team of special education teachers advocating for him?  Did we have any idea our child would need special equipment to move, stand, regulate himself, and even eat?  Did we know our child may never understand what it means to be adopted?

My answer to all of these questions is, no.  We did not know.  We met Kahsay two times before finally bringing him home.  We did not have any major concerns then and did not have any major concerns months after he came home.  He was only 5 months old when he came home.  He smiled, cried, pooped, slept, jumped, loved his bath, and did normal things a 5 month old would do.  The only concern I had was his flat head and lack of desire to play with toys.  He wore a helmet and attended therapy.  It wasn't until I began to see child after child graduate from therapy that I began to worry.  It wasn't until his therapist suggest we get his eyes checked that I began to worry.  I wasn't until the vision specialist suggested he get an MRI that I began to worry.  It wasn't until we sat with our pediatrician and listened to MRI results that I began to realize we had something to worry about.

Kahsay was 8 months old when we began to uncover the answers to his struggles.  Many have asked us if our agency lied to us or tried to hide anything.  We know without a shadow of a doubt that our agency had no idea of the severity of Kahsay's special needs.  They were amazing through our entire process.

I know my honest answer to this question may scare a few people away from adoption.  However I also know that God does not call everyone to adopt.  Adoption is not easy.  I know my answer to that question may scare those in the process of adoption, but I also know that those He calls He also equips.

 Did I know my child would bring friendships in my life that I can't imagine life without?  Did I know my child would give me a new appreciation for families who deal with the emotional, physical, and spiritual strains of raising a child with special needs? Did I know that my child would drastically change my walk with my Heavenly Father?  Did I know my child would bring thousands of people to their knees to pray? Did I know that my child would teach me that only in weakness are we strong?

My answer to these questions is no.  These are the questions I love to answer!! I love to testify that even though the answer is the same to all the questions at the beginning of this post, it is only because we serve an amazing God that I am filled with gratitude, peace, and a hope that is only from Him.

New Understanding (Beware: Long Post)

The past few months have been filled with amazing progress for Kahsay.  While he still is such a tiny little peanut, he is getting stronger physically.  We are so excited with all of the new things he is trying to do.  

• He will go from laying to sitting, and is even going from sitting on a stool to standing up.  
• He is unable to stand unassisted but understands the command and rocks himself to a standing position.  
• We are working on putting weight on his arms so he can stand up next to a piece of furniture.  We are at the beginning stages of this but I am excited to see his motivation. 
• We will most likely be ordering leg braces to help stabilize his legs and ankles.  
• At this point he still does not have the coordination or strength in his arms to pull himself up, but we are continuing to work toward that.  
• He is starting to babble more and even use different vowel sounds.  We are working on putting one word names to his toys, commands, and activities.  
• He has graduated from his first vision tracking movie and is ready for the next level!  We know he is ready because it can keep his attention for almost the entire 20 minutes.  
• We still do not have the results of his growth disorder blood tests, but I am hoping no news is good news.  
• We are learning that Kahsay limits the amount of food he will take orally and through the g tube.  He will NOT orally drink more than 5 ounces at a time.  He cannot handle more than 4-5 ounces through the g tube at a time. If we attempt more he gags, and becomes uncomfortable and sweaty.  This means we struggle everyday to get in the right amount of ounces.  The endocrinologist suggested we add fat without volume.  I have put off this change until we get the results of the blood test but am realizing the results most likely will not change the amount of calories he can handle.

So much of Kahsay's therapy is focused on motor development but recently many discussions have been centered around helping Kahsay adapt to new environments.  When he first came home we did everything to keep him home and in a familiar environment.  If we did take him out he stayed near us and we often left if he was agitated.  I removed myself from Bible study, Mom's group, church activities, school volunteer opportunities, and even play dates with friends.  As a family we took a year off from sport teams, and other activities that would put Kahsay in environments with too much stimulation.  

While this was needed and important for Kahsay for a period of time, it now is important and needed for us as a family to begin to be involved again in those activities.  Jason and I have not sat together in church in over a year.  We are constantly separated as a family so one of us can stay home with Kahsay.

A few weeks ago Kahsay attended his first group therapy session.  His therapist and I agreed the infant group would be best for him so his mood could remain regulated.  While the other three children played, laughed and performed, Kahsay cried and began to shut down.  I left feeling discouraged and worn out.  I just wanted one time to be the parent whose child was not crying during therapy.   My heart broke for Kahsay but selfishly was annoyed that he couldn't just pull it together this one time.     

The girls have often made comments about "crabby Kahsay" when we are out trying to do something as a family.  We have often left social gatherings, church activities, and even family functions early because Kahsay is agitated.

His therapists explained that when Kahsay is put in an environment that is unfamiliar and over stimulating his senses start to shut down.  I have noticed the few times recently when I put him in nursery and go to pick him up he is sitting in someone's lap and is lifeless and showing no emotion.  He completely shuts down and usually copes by not interacting at all or screaming.

 We now realize it is not in Kahsay's best interest to expect him to behave in new situations and it is not healthy for the girls to be taken away from normal activities.  We are working to find a balance in both of these scenarios.  Someday I hope he can join us in all our family outings but for now it is okay for him to remain in his "safe" place.  We have begun to introduce Kahsay to a few people that will be is constant caregivers besides family.  We hope to have Kahsay stay with a few of these people during church so Jason and I can enjoy a service together again.  We are okay leaving him with these caregivers or family when we go to large social gatherings or church activities that would prove to be too much for him.  We are learning it is the best way to love Kahsay and remain a healthy family.  

It is crazy how I always thought Kahsay's mobility would be the thing that keeps him from participating in "normal" kid activities.  I am thankful to be filled with such hope that he will someday walk and run with his sisters.  In the same way I also pray Kahsay is able to adjust to new environments with help from us and those who care for him and we are able to give him the best environment to help him grow and progress. 

Vision and Growth

I apologize in advance for this post.  It was written quickly and may be a bit scattered.  I just couldn't wait to share the progress Kahsay has had.  This month we have seen unbelievable growth in Kahsay.  I wish I could say physically but sadly not in that area.  We have seen tremendous growth with his vision and gross motor.  A few weeks ago we had an appointment with Kahsay's pediatric ophthalmologist.  While we had seen some improvement with his vision we had no idea how much.  I recall leaving our first appointment with this specialist and his exact words to me were "He is doing good, but he has a long road ahead of him."  Leaving this appointment his exact words were "After surgery I would be confident to tell you I would no longer diagnose him legally blind."  My eyes widened and my heart jumped.  Never in a million years did I think he would tell us this at 19 months of age.  We were told his vision could improve up to age 3 but how much they couldn't predict.

He explained to us that because of the amount of progress he would like to do surgery on both the left and right eye muscles.  Kahsay's right eye has about half of the vision the left eye does.  He does believe this will be the case long term but, if he can align the right with the left he feels his fine motor with improve.  Currently Kahsay does not see a toy and try to grab it.  He will put his hand out if it makes noise.  We are trying to decipher if he does not see the toy or if it is a lack of coordination.  Surgery is scheduled for November 20. Previously his doctor also did not feel glasses would make a huge difference because he has cordical blindness.  He now feels with the improvement already and the surgery, glasses could make some additional improvement.  PRAISE GOD!!!!!  A beautiful example of an amazing miracle at the hands of our all powerful God.

On the subject of miracles.  If you have not seen this video of Kahsay sitting up it is a must see. Almost one year ago we were told Kahsay may never walk, talk, or feed himself.  This past week he learned to sit up all by himself.  The fact that he gets up on all fours and weight bears on his arms is HUGE.  In order to walk someday Kahsay needs to be able to weight bear.

Lastly, this past Friday we met with the endocrinologist.  This was our next step in trying to figure out why Kahsay will not gain weight or grow.  He ordered a variety of blood tests that were sent out to Mayo Clinic.  We should hear results within 10 to 14 days.  He did tell us he is fairly confident Kahsay shows all the signs of a growth hormone disorder.  Update to follow....

Thank you all who read this blog and pray for our family and Kahsay.  We know God hears your prayers and we can't thank you enough for storming the gates of heaven for our little man.

Blood Test

Just a quick update:  Kahsay's thyroid test came back normal so we were referred to the endocrinologist to see if there is a possibility of a growth disorder.  Today until tomorrow we are at DeVos Children's Hospital for his 24 hour video EEG.  He is a champ and just hanging out.  I am bored out of my mind!!!!  I can't leave the room with him or even take him on a small walk on the floor.  Lots of one on one time for me and my little buddy.

Weight, Tests, and Diagnosis

     Today was a well child visit for Kahsay.  I was really excited to have him weighed and measured.  He had been drinking almost all of his required ounces through the bottle and only needed to have a night drip once in a while.  He still receives all his medication through his tube and gets supplemental feedings randomly when he is having a hard time drinking the bottle.  All in all I felt very confident that he was going to have gained weight and inches.
     When the nurse put my squirmy wormy on the scale she slid it up to 20.  I was ecstatic!  BUT all too quickly began sliding it down.  All the way to 18 of all numbers.  If you are not aware yet, Kahsay has been 18 lbs. since October.  She even told me he was just a bit under 18 lbs.  Trying to hold my tears and not show her my extreme disappointment, I quickly transferred him to check his height.  Everyone lately has commented on how long he is getting.  Well after she told me that number we realized he had not even grown an inch.  I had her measure him 2 more times to come up with the same number.  Discouraged I walked back to our examination room and began wondering, "What in the world will we do now?".
   When the pediatrician came in he too just said "UGH."  However he quickly told me we were going to come up with a plan.  The plan will be to first check Kahsay's thyroid.  If that test comes back abnormal, they will put him on thyroid medicine.  This would be an easy fix.  If the test comes back normal, he will refer us to an endocrine specialist at the University of Michigan.  He began to explain that he believes we could be dealing with a growth disorder.  His first assumption is the simple growth hormone deficiency.  If this is the case Kahsay would be put on growth hormone injections.  Again he assured me this could be a pretty easy fix.  The specialist will test for many different growth disorders but the above one is the most common.
     I am so thankful for a pediatrician who is proactive and doesn't wait for things to happen.  I will take Kahsay in tomorrow to get his thyroid tested and we should get results by Thursday or Friday.  The Dr. even said if the test does come back abnormal we will try thyroid medication for 6 months.  If he does not start growing we will be referred to the endocrine specialist regardless.
     So I guess my prayer is that an answer is found quickly for Kahsay's lack of growth and that whatever the cause is would be an easy fix.  I will admit I thought for sure we were done with tests and hospital stays.  I am learning very quickly that brain injuries are very complex and effect the body in so many ways.
     Speaking of the hospital, Kahsay will have a 24 hour EEG done at the children's hospital this week Thursday to Friday.  I have no idea what to expect.  I hope they will teach me more about his seizures, what to look for, and when to be concerned.  I am a little excited to have hospital ice chips.  They are the best in town!
     I did forget to mention that at our neuro development appointment in June Kahsay was officially diagnosed with cerebral palsy also.  I was not at all surprised by this, but our neuro development doctor does not officially diagnose until 15-16 months of age.  This will be beneficial to have on his medical records.  It will help us to some day have an easier time getting any equipment we need for Kahsay.  Equipment that could eventually help him walk.  I told her in that case why don't we throw a few more labels on there also :).

Brief Post Surgery Update

Kahsay is finally drinking bottles again.  He is very cautious and only will drink 2 to 3 ounces per feeding.  We have had to supplement with tube feedings.  We also do a drip from a pump during the night to be sure he is getting the correct amount of calories per day.  We are not up to the right amount of calories yet but we are getting closer everyday.  He has slept through the night every night he has been hooked to the pump(amazing!!!!).  Besides a few rough days, he has been very happy and active.
I am so happy to be this far and feel this was the best decision we could have made.

Beauty in the Unexpected

     When we started our adoption process, I never imagined our life would look like this almost a year home with our son.  Today we arrived home after a 3 day hospital stay for Kahsay's nissen and g tube surgery.  As usual I began to unpack my suitcase and Kahsay's toys, food, and clothing.  After finishing, I looked at the large box on the counter filled with medical supplies.  It contained tubing, syringes, gauze, emergency kits, and cans of Pediasure.  I realized I had to find a place to keep all of these supplies and all of the subsequent supplies that will be shipped on a regular basis to our home.  As I filled his drawers and wheeled his pump into his room it hit me, this is not what I imagined our life would look like.  

     After saying "yes" to God's call, I dreamed of the first time I would meet my son, what his face would look like, coming into the airport being welcomed by family and friends, uniting him with his sisters, and beginning a life with our son we prayed for and dreamed of.  All of these moments were amazing and memories I will never forget.  While these were amazing they are just small glimpses into the journey of adoption.  

     Adoption is the hardest and best thing I have ever been called to.  The moments of financial stress, waiting, paperwork, longing, unexpected changes in country policy, doubt, and the stress of attachment were so difficult.  The moments of confirmation, surrender, love for a child you have never met, support financially, emotionally, and spiritually from loved ones, and desire to follow God's call were life changing.  

     The moment I never imagined, was looking for a place to store all of my son's medical supplies so that he could begin to gain weight and develop. I never imagined the nurses at the children's hospital remembering my son  from  his previous appointments.  I never imagined I would know so many specialists in my city and be looking into all the different kinds of therapies offered.  I couldn't begin to dream that I would be working with him on sitting up and weight bearing at 15 months old.  I never imagined I would be excited when my son visually would track me.  I never imagined I would adopt a child that has special needs. 

     Comparing these moments as I settle into a  new normal, really helps me put life in perspective.  While the feelings I felt when we saw Kahsay's face for first time were amazing, I feel the same way when Kahsay learns something new.  The day we walked into the airport and united our family forever was beyond words, but I am also speechless when my son sits up for 15 minutes all by himself.  The smile I had pasted to my face the day my son cried for me was the same smile I had the day my son ate almost a 1/2 jar of baby food in one feeding.

      I never imagined that the moments I dreamed of and moments I never wanted to be reality could equally bless my life.  Today, if I could throw away all those medical supplies in my son's room and completely heal his brain I would in a heart beat.  Today if I could heal my son's vision, and cerebral palsy I would.  While I would heal Kahsay's body I would not change who my son is.  I would never change his contagious belly laugh, adorable smile, and LOVE for music.  While our life is not what I expected, it has become something beautiful.  I have learned the beauty of weakness, sacrifice, unconditional love, faith, trust, and surrender.  I have learned that while the unexpected is hard, it is God's way of molding us into something much more beautiful.  

     After we found out the results of Kahsay's MRI, a friend reminded me of something I told her in college.  She asked me how I would feel if I had a child with special needs.  I told her I would consider it a blessing.  

     While I do not remember this conversation, I can testify today that I consider it a blessing to have a child who has made my life more beautiful.

     

 

Surgery and Seizures

With the recommendation of the pediatric surgeon and our own knowledge of what is best for Kahsay we have decided to have the nissen and g tube surgery.  He said with a child who has seizures and neurological damage his puking could get worse.  It is scheduled for June 5.  He will be in the hospital for about 3 days.  The doctor explained the g tube surgery similar to piercing an ear.  He said it literally takes 10 minutes and is a simple procedure.  The nissen is more complex.  The surgeon we spoke with said he prefers to make an incision and have a better look at the stomach.  He will have a better handle on how tight to tie the esophagus and it is less likely it will have to be done a second time.  There is an option for a laparoscopic  procedure but this is used most of the time for adults.  It can be used in children and is less invasive but I like the idea of the doctor having the best look possible.
I never thought I would be so excited to have my child go under the knife.  Kahsay just had a coughing, puking week.  Jason and I both said it was the best confirmation we could have asked for.  He also was weighed and still did not hit the 18 lb. mark.  My poor little buddy needs to get some chub on his bones.  He needs to be able to laugh, sneeze, and cough without puking.
We are still working on the correct dose of medication for his seizures.  He is still having them but we have seen less.  The side effects of the medication have been minimal.  I am thankful for that.  He couldn't get into the hospital for a video EEG until August.  We are on the waiting list but we are a bit frustrated that we will need to wait that long before we really know how often Kahsay is having seizures, besides the ones we see physical signs of. He has had a few REALLY good days.  He has been content, smiley, playful, and alert.  I am hoping this is all because the medication is working on those seizures.
Thanks for your words of encouragement and commitment to lift us up on prayer.   It gives us strength and  gets us through the difficult days.  

Bittersweet Decisions

The past few weeks have been a bit overwhelming but at the same time a step in the right direction.  As I wrote in my previous post we were meeting with a doctor to ask questions about the feeding tube and nissen (sorry spelled in wrong in my previous post) surgery.  He agreed with us that the nissen and feeding tube were definitely necessary for Kahsay.
    These two surgeries will help Kahsay gain and maintain weight which will only benefit his development.  I am ready to take this step but at the same time for me it was hard to get past thinking it REALLY meant Kahsay was a special needs child.  Let's be honest he was a special needs child before these surgeries, but I think I was in denial. I had these hopes that his development would "catch up" and he would be completely normal.   I also know it means it will be more difficult to have random people care for Kahsay.  We already have a few select people who watch him, and now it will be even harder.
      On a positive note,  I am excited that I won't be called home by the babysitter because Kahsay puked all over his bed.  After having the nissen surgery he will not be able to throw up.  I am so excited to be able to give him his medications through the feeding tube.  He is HORRIBLE at taking his meds due to his dysphagia.  I am so ready to have peace of mind that he had a sufficient amount of calories at the end of the day.  These benefits far outweigh the labels that scare me.
   We are scheduled for a consultation with the surgeon next week Wednesday.  I am praying all our questions are answered and we do not question are decision to do this.
    In addition to preparing for these procedures, I received a call today with the results of Kahsay's 24 hour EEG he had last week.  It confirmed that he was having numerous seizures a day.  More than I am even aware of.   I am so thankful for a friend who encouraged me to follow my mommy instincts and have him tested.  We did have an EEG for Kahsay in the fall, but it was only 30 minutes.  I had noticed the episodes becoming more frequent, longer, and more intense.
     We are told he is having two different types of seizures.  One of types is caused by only one part of the brain.  These types of seizures are not as noticeable because the physical effects are not as apparent.  While these are not as noticeable they are still bad.  The other type of seizure is caused by the entire brain.  These are the ones I see physical signs of.  Both types can cause cognitive delay, tiredness, lack of awareness, sensory issues, etc.  The nurse explained to me that every time he has a seizure his brain has to reboot.  If he is having numerous per day is poor brain is constantly rebooting.
     He is being put on a medication to try to control them.  It is all trial and error as to what type of medication and what dose will work.  He is going to be scheduled to have a 24 hour video EEG at the children's hospital so they can really see what happens during his seizures.  It will better equip us so we know    when he is having them.
    While I dreaded hearing my son is having seizures, that will most likely get worse as he develops,  I also am so thankful to have caught them.  I am thankful for another answer that will help get Kahsay on the right track to be able to develop to the best of his abilities.  I guess I can say it was a bittersweet week.

Test Results and Next Steps

     A few weeks ago Kahsay stayed in the hospital for a 24 hour test to record the severity of his reflux.  He also had a scope of his esophagus and stomach.  These tests were done due to his lack of weight gain and struggle to maintain weight.  He has struggled with severe reflux since we met him.  I was excited to have both of these tests done and hoped it would give us a few answers and help us decide if we should pursue the Nissan and feeding tube.  I was bummed that he had a great day in the hospital.  He had very few reflux moments and did not throw up one time.  As soon as we returned home he threw up 4 times in 48 hours.  UGH!!!  I was not surprised when the GI specialists called to tell us Kahsay's tests came back normal.  Now what?  I prayed for God to give us clear direction and wisdom.    
     A week ago Kahsay had a well child visit with his pediatrician.  His major concern was his weight plateau since October.  Kahsay has weighed between 17 lbs and 18 lbs for 7 months.  His concern was enough for me to realize something needed to be done.  He wanted Kahsay to come in for a weight check in a few weeks.  If he has not gained any weight, He wants us to meet with a surgeon to discuss the Nissan and feeding tube.  The feeding tube sounds like an amazing option for Kahsay.  It would take the pressure and stress off of us constantly worrying that Kahsay is not taking in enough calories per day.  It would eliminate the daily struggle of how to get medication in him due to his diagnosis of dysphagia.  I would still feed him orally the exact same as I do now, but would be able to add extra calories into the feeding tube. With the feeding tube we would also have a nissan.  The nissan is the part that scares me a bit.  There are conflicting opinions about this particular surgery and there are some negative side effects that can happen.  

     I continued to pray for God to give us clear direction.  I just wanted Him to hit me upside the head with an answer I couldn't miss.  I believe His answer has come in a few different ways. 

      First, Kahsay had a really rough few weeks following his test.  He was extremely fussy, and refused his bottle most of the time.  For some reason his over sensitive gag reflex returned full force.  He was getting four molars at the same time and since he refused his bottle was unable to get any pain relief.  Every time I tried to syringe the medication in him he puked.  I realized if we had a feeding tube this would not be a big deal because he could have gotten all his calories even though he refused the bottle.              

     Second, we got an appointment with a doctor that comes to Kenosha (the school system Kahsay receives his therapy from).  This doctor has had 30 years of experience with special needs children and had a child of his own with special needs that past away.  He has worked with children with the same needs and diagnosis as Kahsay.  My therapist said he would spend an hour with us if we wanted.  We could ask him any and every medical question we had and he would advise us and inform us.  Thank you Lord for that opportunity!!!  Our list of questions continues to grow.

     In addition to the GI tests, Kahsay will be having another EEG this Monday to Tuesday,  but this time it will be a 24 hour one.  His episodes have been happening more often and lasting longer.  We just want to have him tested to be sure they are not seizures.  

     This is all for now.  Please pray we have a great meeting with the doctor and his EEG comes back normal.

Referralversary!!!

One year ago today we saw this face for the first time!  We waited 20 months on the waiting list and it was worth all the wait.  The journey has not been exactly as we expected it, but Kahsay has brought such joy to our lives.  We love you buddy more than words could ever express!!!

April 5, 2012

February 19, 2013

My Birthday!!!

Easter- 2013

Kahsay with his sisters and cousin.  

April 5, 2013

Where are We Now?

So many of you ask how Kahsay is doing, and how we are doing.  I think I have put this post off for so long because so much has happened and is happening.  I honestly do not know the best way to write this post.  It could be extremely long if I go into too much detail, so I will try to summarize as best I can.

Neurological-  At this point it is determined that Kahsay's episodes (as I call them) are not seizures.  He has times where his right hand will twitch and his eyes will go up and twitch also.  Sometimes I can say his name to get him to stop, but not always.  His neurologist told us as long as they don't get longer and he can come out of them fine, we are clear.

Vision- We recently had an appointment with a specialist in Grand Rapids.  He is amazing and has an incredible reputation.  Some of what he told us we knew, but he also answered many questions we have had since the MRI results.  Kahsay's eyes are not the issue.  His vision impairement is due to a processing delay.  The connection from his eyes to his Corpus Callosum was damaged due to the stroke.  The doctor said it is extremely poor.  The good news is it can only get better as the brain begins to find new pathways.  To the extent of how much better he cannot predict, but it will get better.  We notice Kahsay can see better when his body is in a fully supported position and outside distractions are minimal. We are working with a vision therapist who already has taught us great strategies.  His vision is very limited at this point but we have hope it will improve.

Eating- Although Kahsay is one year old, he still is primarily on formula.  We have been in feeding therapy since October and have made great progress.  We began by working to make eating safe for Kahsay.  We now thicken his formula so he does not aspirate.  We have begun basic puree eating, but it is only for motor development, not for nutrition.  As Kahsay's body begins to strengthen so will his muscle control in his mouth.  At this point his muscle control is compared to a 4-5 month old so to expect him to eat like a one year old is unrealistic.

While eating has come a long way, it still has been a source of struggle and frustration.  Kahsay has very severe acid reflux.  He limits the amount of ounces he will drink to 2-4 ounces per feeding.  We are working hard to try to bulk up his calories, but if he continues to throw up what he eats, adding calories will be useless.  We have met with his doctor, and had a few tests done to figure out what to do.  Since October Kahsay has not gained weight and this week he lost weight.

There is a surgery called a nissen fundoplication we are considering.  At this point we are not ready to jump into surgery but are at least considering it.  As with many surgical procedures that are irreversible there are positives and negatives.  Please pray we receive a very clear answer for this.  Kahsay has to get tubes in his ears and possibly have one more test before they will consider this surgery.

Motor Development-We started off going to physical therapy and occupational therapy each week.  Now we have a therapist who works for a program called Early On.  We qualify for the special education part of this program and have been amazed at how much we have learned.  His therapist comes to our house one time per week and works with me on how to best help Kahsay develop in all areas.  As hard as it is to hear, Kahsay's motor development ranges from a 2-6 month old.  He is able to roll over.  He can sit up for a short period of time but does not weight bear on his arms so if he falls he does not catch himself.  We are working on loosening up his upper extremities and strengthening his core.  He has left side weakness but will hold toys in his right hand.  At this point he does not reach out for toys voluntarily, but if he hears them or feels them he will initiate play.  Babies main motivation to be mobile is because they see something they want to get to.  Kahsay will need to be motivated by sound rather than vision at this point.  We are working on getting him to want to move so he can be near us.  It may sound weird but I often sit on the floor and call his name like a you would call your dog.

Social Development- Kahsay's therapists and doctors say this is his strength.  He is extremely social.  He loves to laugh, babble and smile.  He is driven by music so we spend many hours singing to Kahsay and playing music.  It can calm him almost immediately.  He will smile at anyone who talks to him. This is such a blessing!  My greatest desire for Kahsay when we were told his diagnosis was for him to take in life and love it!

Adoption Related-  He has been home for 8 months.  Kahsay's bond to us is very strong.  I do not have a doubt in my mind that he is well attached.  He LOVES his sisters and desires to play with them and be held by them.  When he hears daddy's voice he cries until he comes to pick him up.  This is what any parent desires and even more so with an adopted child.  For a long time I wondered if Kahsay was going to have a "typical" bonding process because of his diagnosis.  It warms my heart to see my son cry for me despite not being able to see me.  He knows our voice, our smell, and our touch.  

We have an amazing team of doctors and specialists advocating for Kahsay.  We are so thankful to have  professionals to walk with us, coach us, encourage us, and just love on our son.  We are still processing all of this.  We have good days and hard days.  It is hard to feel like life is normal yet.  To be honest there are still days I grieve what we hoped for.  I do not grieve Kahsay coming to our family, but I grieve the life we hoped for him. I know there will be a time when we are not going to therapy 3 times per week and extra doctor and specialist appointments.  I know a day will come when I won't get jealous every time I see another child Kahsay's age walking around and playing, but that will take time.

Kahsay is an amazing little boy who has brought so much joy to our lives.  I am excited to see how God is going to use Him for His kingdom.  I know my son has already turned lives back to God and will continue to do so.

He Knew What He was Getting Into

This past weekend I attended the Created for Care adoption conference in Atlanta.  There were about 450 other women who are thinking of adopting, waiting for a child, and home with children.  It was a time of reflecting, learning, worship, prayer, and fun. There were sessions regarding all areas of adoption and orphan care.  Every session and main session I attended was amazing and left me needing some time to process everything I heard.  I would love to share all that I learned, but this post would be way too long.

Instead of sharing everything I learned, I will share with you the message I knew God wanted me to hear.  It was a message that restored me and filled my heart with an overwhelming peace.  Before I share the message, I need to give you a bit of background.

When God called us to adopt I had no idea how hard and amazing this journey would be.  It has been the hardest journey God has led us on and the best journey God has led us on.  There were times I tried doing it in my own strength but quickly learned to fall to my knees and surrender to His plan.  Not only did life change drastically for us but it also changed drastically for Kahsay.  This is why the transition and bonding time can be hard and long.  In the midst of this struggle we were told the news of Kahsay's special needs.  If you are unaware of this story you can read it here MRI results.  While we have seen God's miracles in Kahsay's life, there are still the daily demands of his care that leave me feeling unequipped and unable to be the best mom for Kahsay.  I know these messages are from the devil, but it takes constant time in the word and on my knees to keep me focused and encouraged.

The day before I was to leave for this conference I was in my room crying out to God.  Kahsay was sick AGAIN!  He was puking during every nap, and struggling to keep his food in.  His nutritionist already is concerned about his lack of weight gain since October and again he is puking up much of what goes in.  Feeding has been a big struggle since we have come home.  It took us months to finally get his feeding safe, and now we may be right back at the beginning.  His neuro development doctor suggested we get another swallow study done to be sure he is not still aspirating.  Since he does not tolerate any purees, formula is what gives him the calories he needs to develop.  I was feeling completely defeated.  I know none of this was in my control, but for some reason I was taking it all on my own shoulders.  I was searching within my human strength to handle it.  I was having this nice little pity party.  I convinced myself that God was disappointed with me and probably wished he had chosen a different mom for Kahsay that could handle this with strength and patience. I even got a bit angry with God.  I was certain I deserved for Him to take away this pain and struggle.  After wiping away my tears I decided to suck it up and try better.  Honestly I still felt like someone could do a much better job.  God called me to this very important job, and I felt like I was letting God and Kahsay down.

These feelings seemed to creep up while attending the first few sessions at the conference.  On Saturday I attended a session titled "The Connected Mom- Staying Close to the Lord among the Demands of Parenting".  The paragraph that followed was this:  "All mothers have seasons when our circumstances, and even the people we love most, place intense demands on our strengths and test our weaknesses.  How do we stay strong?  How do we get refreshed and strengthened so that there is an overflow available to meet the needs around us?".  Sounds amazing huh?  It was exactly was I was looking for.  I knew I lacked that constant connection with my Heavenly Father.  I knew I needed to do better at being creative to find those small moments with Him.

I will say the message of this session was exactly what God wanted me to hear.  It was not the part of trying to find time with Him that hit me the hardest.  The encouragement and tools the speaker offered for this were great and gave me hope.  The part of the message that hit me the hardest was the songs she played.  All three songs were exactly what I needed to hear but one in particular brought me to tears and broke me.  The song "I Knew what I was Getting Into" by Misty Edwards has such a beautiful message that I had to post the words and You Tube video below.

I Knew What I was Getting Into- You Tube video

CHORUS

I knew what I was getting into when called you.
I knew what I was getting into when I said your name, but I said it just the same.
I knew what I was getting into and I still want you.
I knew what I was getting into.

I knew what I was getting into and I still chose you.
I knew what I was getting into and I still want you.
I knew what I was getting into when I said your name, but I said it just the same.
I knew what I was getting into.

VERSE

And I am not shocked by your weakness.
And I am not shocked even by your sin.
And I am not shocked by your brokenness.

Cuz only I can see the end from the beginning.
And only I can see where this is going.
And only I can see the end from the beginning.
And I see in you the seeds of love.
And I see in you strength when all you see is your failure and all you feel is ashamed.
I can see deeper than that.
I know you better than that.

CHORUS

VERSE

Your only at the beginning.
You've only just begun and I know where you are going
And all you can see in the moment is that your hurting.
And all you can see in the moment is that your aching.


BRIDGE

Just don't give up.
And don't give in.
If you don't quit. You win, you win.

Just don't give up.
And don't give in.
If you don't quit. You win, you win.

Everything is in my hands.
It's going to be alright.
Everything is in my hands.
It's going to be alright.
It's going to be okay.
Everything is in my hands.
It's going to be alright.
It's going to be Okay.
And you don't have to pretend to be something or someone your not.
Cuz I know you better than that, even better, even better than that.
Listen my Beloved.

CHORUS

As I sat there crying and listening to this song I realized God called ME to be Kahsay's mom.  God called ME to walk this journey with him.  God called ME!  He did not want someone else.  I was the perfect imperfect person for this particular calling.  Why did I think God was surprised by my shortcomings?  Why did I think He expected me to the perfect example of strength and patience?  Why did I think God wanted anyone but ME to fall to my knees, surrender, and allow Him to lead me through this?

Needless to say I came home with a new and refreshed spirit.  God has called me to be His tool but He will equip me and carry out exactly what He has planned.  I do not need to do anything but stay connected to Him and trust He's got this.

Here are the other two songs we listened to.  They are just as amazing!  I hope they give you the encouragement you need today.

You Know Me

Come to Me

Merry Christmas!

Gabbie - 8 years old

Alexa- 5 years old

Maia- 3 years old

Kahsay- 10 months old

God's Blessing of HOPE

Today was amazing!!  We feel so encouraged.  Here is an overview of what we learned.

We began by looking at the MRI.  

The frontal lobes are full and beefy.  The posterior lobes are skinny and wasted.

It is apparent it is not what he started with, which is evidence that something happened in utero or possibly during birth.  It was not a genetic malformation.

There is less brain tissue in the posterior lobes which also means less fluid

His frontal lobe will grow normal.

She does not think the head will look abnormal as it grows.  It may not be normal size, but it should remain round.  

While the optic nerve is present it is very thin and hard to see.  This is a consequence from not having input from the area of the brain that controls vision.  His visual impairment is not an eye issue but an input issue.

It is likely his vision will get better with time even up to the ages of 3 or 4.  To what extent we do not know because the damage was severe.

His corpus callosum does show thinning, but she also said some people are born without one and have no idea until they have a head scan for some other unrelated reason.  She said the brain usually finds other pathways to connect the sides.

His cerebellum is healthy- which controls cognitive learning and balance.  This does not mean he will not have struggles with learning, but some of it could be mainly due to his vision impairment.  We will have a better understanding around 3 years of age.

The damage was further up on the right side of the brain which explains his left side weakness.  She said she already sees evidence that his brain is learning to overcome that.  Neuroplasticity was the term she used. Neuroplasticity is the brain's ability to reorganize itself by forming new neural connections throughout life. Neuroplasticity allows the neurons (nerve cells) in the brain to compensate for injury and disease and to adjust their activities in response to new situations or to changes in their environment.

Best news- More of his brain is healthy than not! Our jaws dropped.  That was not what we expected to hear!  We thought the majority of his brain was effected.

She encouraged us by saying kids almost always do better than an MRI.

After we looked at the MRI we went back to the room where she answered our questions-

The Dr. said she has never seen an MRI like Kahsays.  In fact she said all the pediatric specialists get together once a month to discuss unique head scans.  She asked if she could bring his.  She also said the Neurologist will be there which could possibly get us an earlier appointment than May 1.

His diagnosis of Cerebral Palsy is just a clinical diagnosis.  She said by 18 months we will know if it is true or if he is out of the woods.  We will only know as he gets older. She basically said he is at risk for Cerebral Palsy but does not necessarily have it.  Interesting huh?  

He is being tested to rule out a metabolic disorder.  She said it is unlikely.  If he for some reason tests positive then there could continue to be insult to the brain.  Please pray this comes back negative.  This could be an entirely different journey.

Feeding

She basically laughed when I asked her about a feeding tube.  I LOVE her!!!!  She obviously has confidence that his ability to swallow and eat safely will improve over time.

I asked her if it was necessary for Kahsay to wake up to eat twice during the night.  She said there is really no need for him to eat at all during the night seeing as he is a chunky monkey.  She told me I could let him fuss it out.  YES!!!!!

Sleeping

His brain damage has no effects on his sleep patterns besides vision issues.  (still unsure what that means until we talk to his eye Dr. about this)

Like most 9 month old babies he should be able to soothe himself to sleep.  She gave me permission to slowly ween him from needing constant butt patting in order to fall asleep (tough love here we come!).  This is music to my ears.  Bedtime and naptime routine has been exhausting but I felt it was necessary if his brain injury made it harder for him to soothe himself.

Vision

This will be his biggest hurdle.

His vision impairment could cause learning delays and motor delays.  In comparison to what we were initially told, this was no big deal.

Mobility

She did not hesitate to say she feels confident Kahsay will crawl and walk someday.  (PRAISE THE LORD!!!!!!!!!) 

It obviously could take him much longer than other children, but it is possible.

The Dr. was so encouraging but honest about the the severity of the damage. She sure has high hopes for Kahsay, as do we.  We asked why our pediatrician told us such horrible news.  In his defense she informed us diagnostics is tricky.  Our pediatrician was only reading what he saw.  She has 25 years of experience and has learned our brains constantly surprise us.  She was so happy with the development she already saw with him and assured us with the help he will receive and the fact that he is in our family, he will thrive beyond an MRI.  

Obviously there is no way to predict the future, however looking at my son's future with such hope brings me peace.  My heart feels so full.  We know there will be hurdles and struggles in his path due to his brain injury however; we will not let an MRI predict those.  His Dr. was God's angel in our life today.  

 seen kids perform far past their diagnosis more often than not.