Friday, November 16, 2012

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.

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!!!!!

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.

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.

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.

Friday, November 2, 2012

How is Kahsay Doing?

So many of you have asked how Kahsay is doing.  I think it is time I introduce you to our little man.
(Sorry the list is really long)

1. I have been home now for 4 months.
2. I weigh about 18 pounds and have the cutest thunder thighs.
3. I have beautiful brown eyes that bring attention everywhere I go.
4. I am REALLY loud.
5. I seem to grow the majority of my hair on my left side and it seems to grow in tufts.  My mom is ready to finally cut it so it evens out a bit.
6. I did wear a helmet 23 hours a day but my orthotist decided to have me take it off until he is sure it is safe for me to wear it.
7. I have acid reflux really bad and take Prevacid one time per day.
8. I go to bed at 6:00 and usually wake up at 6:00.  Most of the time I also wake up 1 or 2 times per night (only because I am sure my mom misses seeing me.)
9. I have three sisters who fight over me and love to make me laugh.
10. My laugh is contagious and sounds like Woody the Woodpecker when I am tired.
11. I go to physical therapy on Mondays to work on muscle control, eye tracking, and so much more.
12. I have only been home 4 months and have had an EEG, an MRI, 2 eye exams,  a swallow study, a head x ray, a Urology exam, 3 head scans, and a few I can't even remember.
13. I like riding in the car.
14. I go to Occupational Therapy on Fridays.  My therapist works with me on muscle awareness, sensory processing, and so much more.
15. I usually cry (really hard) for my therapy appointments because they make me do hard things.
16. I silently aspirate (when food, liquids, or stomach contents are swallowed poorly, and go into the lungs by mistake). with every swallow.  They are trying to thicken my bottles to make this better.  This is a work in progress.
17. If thickening my bottles doesn't work I will have to go to an ENT to see why this is happening.
18. I hate to eat anything but Soy Formula.  Eating baby food makes me gag and sends my senses through the roof.
19. I am going to feeding therapy 2 times per week so that I get better at that.
20. I am obsessed with my jumperoo.
21. My favorite song is the theme song from VBS called "Fly".  My family can sing this to me and I will stop crying.
22. My therapists are probably so sick of hearing this song.  My mom sings it at least 5 times during my therapy sessions.
23. My sister Gabbie loves to carry me around and help take care of me.
24. My sister Alexa likes to play a game called "bullet" with me.  She lays me down and then pulls me up like a bullet.
25. My sister Maia sings "Fly" to me. Sometimes I wish she would come to therapy because I get sick of hearing my mom sing it.
26. I have left side weakness and hate to grab or touch anything with my left hand.
27. I have poor tongue and lip control so my tongue is always hanging outside of my mouth.  I figured it's the best way to see which way the wind is blowing.
28. When I fall asleep I rock my head back and forth to soothe myself.
29. I love when my mom and dad rock me and feed me my bottle before I go to bed.
30. I take 2 naps a day.
31. I can roll over both ways.
32. After dinner my family sings songs and I get so excited to join them at the dinner table.
33. I can sit up but for only a couple minutes on my own.
34. I have trouble seeing clearly, but my parents and doctors are still trying to figure that one out.
35. When I am fussy my mom lays me on the floor next to my CD player and I am in heaven.
36.  I know a large portion of my brain is not there, but I promise you if you hang with me you would never know.
37. I still sometimes struggle in new places.
38. I think my bath is the bomb.
39. Because I silently aspirate I could be more likely to get pneumonia.  When I get a cold my cough is really bad and usually makes me puke.
40.  I give my mom lots and lots and lots of laundry.
41. People in public are always stopping my mom to tell her how cute I am.
42. I do not play with toys or grab them so my entertainment usually comes from bouncing or jumping.
43. I have already and will continue to change the lives of those who meet me.
44. God is not done with me yet.