Saturday, March 9, 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.