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.