21 Months and Making Progress

Koby continues to progress over the past few months.

MOBILITY:
He scoots on the floor. It's unconventional but it works so long as the floors are slick and slippery. He wants to move his legs and walk but he doesn't have the strength or balance to do so. He wears AFO's, which are leg braces for his ankles. His bones aren't strong enough to support his weight, and so these help him. They annoyed him for awhile, but he's getting use to the feel of them.

REACTING:
A really big step in the right direction has been his ability to wave to us. This is such a big sign of his ability to understand what's being said to him. He communicates by waving, and then he can make a few noises back to us to show his excitement. He isn't talking (and we don't know if he will learn to talk still) but he does try to verbalize a few different tones. Having a child with CP means you are so absolutely excited for ANY sign of progress. Noises get you excited. He laughs when we change a really stinky diaper. I think he is aware of our discomfort with his odor, and even this is a great sign that we are excited about. We are exploring with his therapists different ways to communicate with Koby right now. Studies show that you give children the way of communicating that best suits them. So we are trying to teach him basic sign language. Right now we are focusing on waving hello and goodbye, more, and all done signs. Every night before bed we sign to him "I love you" and he smiles. We are also teaching him to fold his arms while we pray together. He smiles and giggles through the entire prayer. Which makes everyone giggle. It isn't reverent but it's allowed so long as Koby was the instigator.

EATING:
So he still really doesn't eat with his mouth, but we are glad that our insurance has finally decided to help pay for this expensive food. Up until about a month ago we were making his food because of the expense of the pre-made stuff. He's on this stuff called Nourish, which is a blend of garbanzo beans, green peas, rice, carrots, olive oil, quinoa, rice protein, sweet potato, broccoli, kale, flax oil, turmeric, ginger, seaweed, and about 20 different vitamins. It smells worse than it sounds. Trust me. Looking on the bright side he's still tube fed which means his taste buds don't experience the joy of the healthy nastiness. Well, he still spits up so he gets to taste it on the way out but not on the way in. This stuff is nearly $900 per month so it's nice to have that covered for now. He goes in waves of holding down almost all meals (4 times a day) for a week, and then he'll have a few days spitting a bunch up.

READING
He loves to turn the pages of books. Again, another really good sign as he turns the pages when he's encouraged to do so. He gets upset if we put him to bed without reading him a story. And he laughs the entire time we read books. To test the theory I read to him a page of my business book I'm reading and he laughed during it. There weren't any pictures to look at and he still thought it was funny.

PLAYING IN THE WATER
He loves splashing in the water. We put a little bit of water in the bathtub and just let him splash away. We just got him a new "Starfish" bathing chair that allows him to be strapped in while bathing. He's growing enough that it is really hard to hold him while giving him a bath, and so we got him a chair. it's a rather large chair and it only fits in our big master bath tub, but it has made bathing easier. We went to the beach this week and he liked sitting in the salt water and kicking his legs. Koby recognizes the freedom that comes from being able to float in water. His legs and arms work better and he feels a lot more comfortable in water.

ACTIVITY CHAIR
Koby has outgrown his little booster chair that we were feeding him in. His neck control is not good yet, and so we now have a chair that supports his head and neck better. It also gives him lateral support for his trunk. This is a lot safer. It also adjusts so that he can sit at the kitchen table with the rest of us while we eat meals. That might sound like a minor upgrade, but imagine how it would feel to always be at your own area while everyone else is eating. Now he can sit at our same height and be part of the discussion. This chair is also on wheels so he can be wheeled around the house easier. It's too heavy to bring outside the house (it weighs 40 pounds) and it isn't collapsible. But as we possibly transition to a vehicle that will be wheelchair friendly this type of chair will be a big help.

Koby Update, Kyle's Surgery

Koby (and Kyle) Update:

It's been three months since we've posted an update. Looking back there are a lot of things to update on. 

TEST DAY: Today Koby has been at Vanderbilt Childrens Hospital for some sedated procedures. We're hoping we learn a bunch of info. We are trying to find out how his hearing is (getting better, worse, staying the same), structure of middle ear (rule out physical cause of hearing loss, so we're assured it's all sensory-neuro hearing loss), how his GI tract is doing and possibly learn if he has any food allergies causing reflux, and his impedance probe placement for 24 hrs will tell us how often he really is refluxing and how high it gets. 

We've been pushing to get a lot of these for a while it just takes a lot for Vanderbilt to coordinate so many different department procedures. So the GI stuff may seem overdue since he's doing so much better not throwing up so much now but I still wanted to make sure we learned all we can so we know how to help him keep gaining weight. 

Initial report--His hearing hasn't gotten any worse. This is a very big relief. One ear has mild hearing loss and the other is considered moderately severe hearing loss. There was concern that a decrease in hearing from his last test could mean more and more deafness. So maintaining is a good thing. We won't know about the middle ear until next week. 

He had an upper endoscopy and an impedance probe placed. He is back home but there is a tube down his throat right now and will have it removed tomorrow. 

EATING: Up until about five weeks ago he would spit up a large amount of his food. Like every other meal. This made it hard to go anywhere during meal time. We would catch the food in his bibb and put it back in his syringe and re-feed him. Sounds gross but we had to get him food. 

He's now holding his food down much better. We blend a special daily diet for him. We were attempting to get approval from our insurance to subsidize this preferred pre-made food but they didn't approve it, so we mostly make it ourselves. (The pre-made stuff costs $800 per month out of pocket. Yikes!) The expensive stuff gives him awful smelling poops. They are brutal! So on the bright side the homemade stuff is gentler on our noses. 

If the tests show it isn't reflux then it may just mean he has an underdeveloped system. Koby can now handle 4-5 small bites on puréed food.  He doesn't seem phased by textures or flavors. He always startles at the first touch near his mouth but once he warms up he'll last for 4-5 bites. It takes coordination of so many small muscles that it wears him out. He will occasionally enjoy sucking on a Cheeto or veggie straw until it's time to swallow what's melted in his mouth. 

So we will have an update once we know more. 

MOVEMENT: Koby loves to roll around on the ground. He kicks his legs but doesn't have coordination to be able to crawl or walk. We are still working on getting a gate trainer to help him get stronger. Getting insurance to approve anything is really slow. He has a strong desire to walk. We know this because he wants us to stand him up and help him move his legs. He will need leg braces until his bones get stronger. He steps on his feet with each step, something we expected with his latest diagnosis. At least he is trying hard and has the biggest smiles when he is trying. Just the fact that he recognizes that it's exciting to try something gives us hope that he will continue to strive for improvement. 

CP DIAGNOSIS: In March we saw a respected pediatric developmental specialist with expertise in cerebral palsy. This was to sharpen his diagnosis. Koby's specific type of CP is called Athetoid cerebral palsy or dyskinetic cerebral palsy (sometimes abbreviated ADCP). https://en.m.wikipedia.org/wiki/Athetoid_cerebral_palsy

Basically he has both high tone and low tone. All four limbs are affected. His motion such as walking will be a challenge. His speech will also be a big challenge though there is a high probability that he will learn to understand us and communicate in his own way. ADCP is said to affect about 10% of those with CP. 

School ended today and our summer plans are kind of up in the air. 

On a side note our 8 year old Kyle will have surgery today to repair his torn ACL. He was playing flag football and twisted his knee the wrong direction, tearing the ACL in two. Who has ever heard of an 8 year old doing this?! It was a non-contact injury as most ACL injuries are. 

His surgery is very risky and complicated because of his young age. It will be a really long recovery for him. He's the youngest patient with a torn ACL our doctors have ever seen personally. We are confident that surgery is his only option due to the nature of the tear. He's really bummed but trying to stay positive. We are at the hospital now waiting to go back. 

We are rolling with the punches and are grateful for our crazy lives...most of the time. The Nashville Predators have made for extra excitement in our home and given us another fun activity to enjoy together. 

March 2017 Road Trips, Standing, Throwing Up :)

I think about getting on our blog and giving updates often. My goal of doing this weekly has turned into an every couple of months venture. It's been almost two months since our last post. Some days it feels like there is no change. But a lot has changed, though the change is very small from day to day.

MOBILITY


Koby is almost 15 months old now. He continues to roll around from side to side. There's not much coordination in his movement yet, so crawling is still a very lofty goal at this point. We were given a "stander" from the place Koby receives his physical therapy. Another parent donated it and we will do the same once he's outgrown it. He gets to practice standing with the use of the straps. Our goal is 30 minutes per day in the stander. It strengthens his legs and his core, along with aiding in his digestive development since he can stay upright. This is one of the steps in the process of hopefully gaining the ability to walking one day. We will continue to always have that as a goal for him. He absolutely loves to stand in this! As are most things in his development, seeing him stand (albeit with straps and assistance) were moments of joy for us.

It brought a lot of excitement to the home.

One positive regarding his hope for walking is that he can move both of his legs independent of each other. We saw a CP specialist last week and she said that his bones are too soft to support his body weight, and so she recommends that we get fitted for leg  braces called AFO's. Otherwise there is a risk of bone deformity. His lack of balance is going to be one of his challenges to overcome in order to walk one day. His siblings will do their best to help him with this too.

He's also making progress with gripping objects. He's learning to use both hands to grab things and we have to work really hard to get him trained evenly on both sides so he can have the strength to control his tone. Koby loves to pull hair and squeeze our faces. He knows we won't get mad at him for it so he really takes advantage of that:)

EATING

Koby is still slowly gaining weight. He's about 18 pounds (still very small compared to his siblings at this age). He struggles holding down his food. Right now we give him a special blended diet four times per day, at 150ml per feed. The food has a cake batter consistency, and includes high calorie yogurt, vitamins, tums, olive oil, apple sauce, sweet potatoes, peptide (high calorie formula), baby cereal, and water. We can usually count on him throwing up the meals at least once per day. We've learned to catch the spit up in his plastic bibb and put it back in the syringe and back through his G-tube in his stomach. If we don't put it back in he won't get enough nutrition. Not much progress on using his mouth to eat yet. Amazingly he stays happy throughout the day but he still seems to dread meal time.

It take about 30 minutes to make his food, which lasts for two days.

NASHVILLE PREDATORS

We were so excited to be given tickets for our entire family to sit in a suite for a Predator's game. Pekka Rinne is Nashville's goalie and he gave the tickets to us through High Hopes, where Koby goes to therapy. We had the suite with food and even a small hockey goal, sticks, and a puck for the kids to play with during the game. After the game we were invited to go down to the locker room and meet the players and personally thank Pekka for the tickets. It was so exciting for all of us. We met about 13 of the players and they took time to talk to us. We were so grateful. 

SPRING BREAK IN CANADA

We just spent a week in Mississauga Ontario, which is just outside of Toronto. It was so much fun visiting Cammie (Sharalee's sister) and Robbie Low and their two children Grant and Madeline. We ate so much food! We enjoyed a maple syrup festival, Niagara Falls, Legoland, and just seeing the sites. It felt like we planned everything around where to eat, which was perfectly fine with our family. We miss the Low's already!

We are doing our best to juggle our busy lives. Most of the time we are falling short. At least that is how it feels. There isn't enough time in the day to do all that we want. But we find time to smile and laugh as much as possible. It is almost a daily occurrence that Sharalee and i look at each other and say "can we really do this?" The four older kids are all playing sports right now two days per week, and the three oldest are taking piano lessons. On top of Cub Scouts and church activities it is quite a balance. I've recently been told by a friend "you guys are so amazing. How do you do it all?" The honest answer is we don't do it all. We fall so short but we just do our best to prioritize. And that is all we are ever asked to do in life: just do our best. We are enjoying the ride (almost all of the time).

13 Months--Making a Mess!!

One of the greatest blessings we have received from Koby is his ability to give us a better perspective in all of our aspects of life.
The two of us often find ourselves focusing on what is going "wrong" in our parental roles. Our kids don't do this, or don't do that. Or they are ALWAYS making messes constantly.

But as Koby makes progress we celebrate everything. And last week he made his first mess. Usually we lay him on a blanket in our family room and he stays mostly still. He roles around a little bit but doesn't have the coordination yet to do much else. But he was able to grab the diaper basket and push it over. Oh this was just the best. Wait, am I really saying that? We are happy that a child of ours made a mess? Yes it is such great news for us. It means he is progressing enough to knock something over. It means he recognized that the basket was in his way so he did something about it. Bravo to Koby and hoorah for our Warrior making a mess!

Koby also made it to Costco without his car seat for the first time. Normally we have to keep him buckled down because he didn't have the strength or coordination to sit up. But with Krew's help he did it!

Just look at that excitement. This was like a ride at Disneyland to him. He giggled and grinned the entire time. Krew had to hold him up while the cart was being pushed. They are such good brothers to each other.

He was quite exhausted by the end!

Koby continues to progress. Still being fed through his g-tube. He is now receiving a blended diet of vegetables and other good food. It's the thickness of cake batter, which requires a lot of force to get it through the tube. He still spits it up but is getting bigger. He's almost 18 pounds. He smiles all the time. His neck is floppy but he can hold it up for short bursts of time, maybe 5-10 seconds at once. His spastic movements are much less frequent.

We are working on getting him to sit up on his own. He's not there yet but he's trying. He can sit up for 10-15 seconds now. We practice feeding him by mouth twice a day. He hasn't figured it out but he doesn't refuse it either. It's takes a lot of concentration to figure out what to do once the food is in his mouth that it mostly ends up on his clothes or Bibb. But we can tell he is trying to understand.

He's also had four of his teeth break through.

We tried a candy cane. He didn't care for it much :)

He doesn't have the strength or coordination to walk but he does put some weight on his feet if we help balance him.

We are so fortunate. Koby qualified to double his therapies to four per week. Two physical therapies and two occupational therapies. And he also has the feeding therapies once per week and developmental and a speech twice per month. He also is trying to vocalize more and his greatest success of vocalizing comes when listening to Sharalee's cousin sing in the amazing singing group Vocal Point. We listen to them so much that he recognizes their songs now! (We love you Kyle Lemperle)

The other siblings are back playing sports and carrying on with their normal busy schedules. Life is good!

Merry Christmas --Year in Review

Merry Christmas 2016 from the Nabrotzky’s

2016 has been a year we will never forget. Our Christmas card last year mentioned that child #6 was due to join our family in late January of 2016. He decided to come on December 29th, and his birth and first year has changed our family in a tremendous way.

Around noon on the 29th of December 2015 Sharalee called me to say she was not feeling well and was going to attempt to take a nap. Her due date was weeks away, and we were still focused on enjoying our Christmas holiday break. The idea of the baby coming this early wasn’t even on our radar. About an hour later she was feeling awful, so I rushed home to check on her. It was very clear the moment I walked in the door that she didn’t have much time before the baby arrived, and so we rushed to the hospital.

We live only 15 minutes from the hospital, and we were close to delivering the baby in the car with about two miles to go. Luckily we hit very few red lights, and I swung open the emergency room door and called for help. They were quick to rush her into a room. By the time I parked the car she was hooked up to the heart rate monitors, and they were not finding a heartbeat for the baby. Sharalee was calm; I was nervous. I could tell from the look on the nurses’ faces that they were worried. After one hard push out came Koby. But…there was no crying. No noise. No movement. No action. Just silence. They whisked him away and began CPR. I stared at a group of about 8 nurses and doctors, trying to get him to breathe. But there was nothing. He came out so fast that we didn’t even have time to check if this was a boy or girl yet.

I stared at the clock and watched minute by minute pass, knowing that each second meant his chances of survival were decreasing. Finally, after at least six minutes of not finding a heartbeat before the birth, and another six minutes of CPR, they said they barely had a faint pulse. He was then brought into another room so they could have space to try and save him, and the delivery room fell silent again. This was too surreal. What just happened? Our son was born and yet he wasn’t really here yet. After twenty minutes the doctors came back in the room and told us they needed to rush him to another hospital, and that things weren’t looking good.

Over the next few days Koby was struggling tremendously. He stopped breathing many times. Within 3 hours of his birth he was placed on a total body cooling blanket which cooled his body down to 92 degrees for three days. We weren’t allowed to touch him, as the machine was cooling down his body temperature in order to keep his brain from overworking and swelling. All of his bodily functions were brought to a minimum to allow the body to focus on healing. He appeared to be in a coma-like state during that time. We didn’t know if he would survive, but there was an overwhelming peace felt in our home and in the hospital. We put our trust in God and prayed to accept any outcome. When someone goes without oxygen for an extended period of time it affects the brain rather quickly. Sharalee held him for the first time after three days, and he stopped breathing in her arms. It was scary seeing him turn blue and hearing the monitors beeping for the doctor and nurses to come and help. We’ve learned to count every little sign of progress as a blessing.

Through many miracles, Koby started to very slowly improve. Koby made his first ambulance ride at 2 hours old, first faint cry at 3 weeks, first surgery at 4 weeks, first time meeting his brothers and sisters at 5 weeks, first smile at 7 weeks, first time hearing with the use of his hearing aids at 4 months, first time tracking with his eyes at 5 months, first airplane ride at 5 ½ months, first giggle at 6 months, rolled over for the first time at 8 months, slept through the night for the first time at 9 months (hallelujah for that!), began grabbing for objects at 10 months, and continues to make strides every day. His timeline for crawling, eating, talking, walking, singing, and doing other things will be based on his own unique schedule. Although he did cut teeth and get stranger anxiety right on time! We are just so happy that he is here to bless our lives with such wonderful joy and excitement and to teach us how we learn to love one another so much more through service to each other.

We realized very early on that we were going to need a lot of help learning how to manage our new life with Koby. And the first place we turned to was with our own children, asking them to step up and learn to help.

Kinzy (14) is our Feeding Helper. She has mastered how to feed Koby through his feeding tube directly in his stomach, which is the way he continues to get his nourishment because he never learned to suck. She can help with family dinner and gives Sharalee and I a chance to have a regular date night, all while balancing a busy social schedule as an 8th grader at Brentwood Middle. She has become an amazing pianist and loves to come home from school and practice.

Kaylie (10) is our Multi-Tasking Helper. She loves to hold Koby while doing her homework, eating a snack, and watching her favorite TV show, all at the same time. Kaylie is motived to get herself ready quickly in the morning so she can get Koby out of bed to help get him started on his morning routine. Kaylie will gladly do anything for Koby. She also helps by giving him small bites of baby food each day as we try to teach him to eat. Koby has an uncoordinated swallow and doesn’t have control of his neck muscles, which makes feeding him tricky because he often gags, but he is trying hard and exceeding expectations. Her encouragement inspires him to keep trying. She helps organize Koby’s feeding equipment, changes diapers and chooses his daily wardrobe.

Kyle (8) is our Inspiration Helper. His love of sports has intensified this year as he took a break from soccer to play basketball and football. Seeing him score the winning touchdown of his first tournament game was a sports highlight for the year. Kyle loves to play on our new basketball hoop in the driveway. The kids have cemented Koby’s name into the court by permanently etching “Koby’s Court” into the concrete in the driveway when we installed it this Spring. Knowing that Koby has been diagnosed with Cerebral Palsy, we have to wait and see how well he will be able to move around as he gets older. Kyle says he plans to one day teach Koby to play basketball and naming the court after him reminds each of us how we are here to cheer Koby on to greatness.

Kamden (5) is our Goal Oriented Helper. He finds creative ways to get Koby to smile when he returns home from Kindergarten each day. Kamden reminds us that it will be his job to teach Koby to walk and go potty (mom is happy to pass that responsibility on, funny that he’s excited about that?). Kam has enjoyed reading books, and he loved his first season on a soccer team and riding the school bus. He especially loved our family trip to Chicago in September to see the Cubs play at Wrigley Field before they won the World Series. And our annual trip to watch a BYU football game (to Cincinnati in November) was fun as he met the football players after the game. We went right on the field, and he pretended be a BYU football player for 45 minutes with Kyle. He ran from end zone to end zone with the ball, diving into the end zone every time as if the crowd was cheering him on.

Krew (3) is our Loud Energetic Helper. We had no idea that Koby had moderately-severe hearing loss because he would flinch when Krew screamed LOUDLY into his ears throughout the day. Koby needs hearing aids to be able to hear well enough to understand a normal conversation, but Krew is so loud that we can take the hearing aids out when Krew’s around. There is such an overwhelming bond between the two of them. To Krew, there is nothing wrong with his 11 month old brother. He instills in all of us so much confidence that Koby will be more capable than all of us put together. We find Krew by his side constantly throughout each day, usually holding his hand and telling him “you can do it Koby”!

Koby (11 months) is the best blessing we could have ever asked for in 2016. He radiates love and happiness, even at such a young age. He has helped us forge a much tighter family bond, and we all love and adore him just the way he is. He has great things ahead of him. As you can tell from this update he has been the focus of our family’s lives this year.

After 16+ years of marriage we are realizing that our challenges and trials in life make for the greatest opportunities for growth. Trials can be such a blessing if they are faced with optimism. We’d also like to acknowledge that we couldn’t have made it through this year without all the tremendous support and love shown to us this year from our family and friends. So many showed up from near and far to help in some way. For many months we were in “survival mode” and we couldn’t organize our thoughts enough to tell others what help we needed. How grateful and blessed we felt when friends showed up and just started helping us, or brought us a meal, or picked up our kids, or sent a message of encouragement. We can’t do it on our own and we’ve been so thankful to those that for us have been God’s hands here on earth helping us care for our family. We have really felt the love of the Lord through your outpouring of service and love to our family. Thank you, thank you.

We documented Koby’s miraculous life thus far at NabFam.Blogspot.com You can keep up with updates as he continues to learn and grow.
Love,
Steve, Sharalee, Kinzy, Kaylie, Kyle, Kamden, Krew, and Koby Nabrotzky

9 Months And Growing

Tonight Sharalee and I were able to get away from our normal responsibilities and catch dinner and a movie. Before Koby was born this was a weekly occurrence, but life has changed the past 9 months. Just having a moment to breathe and enjoy each other reminded us that we wanted to catch up our blog on how things are going.

We've focused our blog posts so much on Koby that we haven't always mentioned how everyone else is doing. The kids have all adjusted quite well to our new situation. We've tried to give them each attention, and we were able to do that a few weeks ago by taking a weekend trip to Chicago. It was great to spoil our 5 oldest, as we went to museums, enjoyed a Cubs game, and also visited with some of my close Polish friends I knew when I was a missionary in Chicago almost twenty years ago. Sharalee's sister Emily came out to stay with Koby while we went on the trip. He's still struggling with traveling, and it also allowed us to give all of our attention to Kinzy, Kaylie, Kyle, Kamden, and Krew.

Fun day watching the Cubs win.






Visiting my branch President Mikolaj Skinder in the hospital. We also spent the day with the Januszewski family. They remain the heart and soul of every polish speaking missionary to serve in Chicago. We ate dinner at their house every Friday for two years. I've made it a point to return and visit them every couple of years. They are the most amazing family and I just love them all so much. So it was so fun for our kids to meet them.













The day we returned Sharalee's family flew in from all over to spend a weekend here in Tennessee. Kyle was baptized as of member of our church, and Sharalee's dad was here to celebrate his sixtieth birthday. It was a lot of fun. We had a total of 27 people sleeping at our house on Saturday. It was quite a full house! They flew in from Utah, California, and Canada. So much fun.






Kyle's baptism day.







Family dinner at the Wildhorse.

















KOBY

Koby is getting stronger and stronger. He is rolling around constantly on the floor and while he sleeps. He is still a bit weak when trying to hold his head up, but we are still amazed on how far he has come. There was a NICU reunion a few Saturday's back, and we were able to visit with some of our nurses and doctors. They were all amazed to see the progress of Koby and how far he has come. After visiting with some of our nurses we went back upstairs to the seventh floor of the hospital, right where we spent every day from the end of December to February. It brought back such a huge range of emotions for us, and it was great to have Koby in our arms and be able to leave the hospital with us this time. Here's a picture from when he was in the NICU, and here are a few pictures from this past week. What a difference:)










He's gaining weight, and we can FINALLY skip his midnight feed. The sleepless nights have continued every single night for nine straight months, but he's finally gained enough weight that we can get a little more rest. We had to get each feed up to 117 ml, and he had to consistently hold the food down without throwing up. We've only been able to increase his food by one ml every couple of days. He weighs close to 15 pounds.

He's still eating through a G Tube. He goes to feeding therapy to try and teach him to eat with his mouth. We expect the g Tube to remain for now. The balloon that holds his Tube in his stomach pops occasionally but putting in a new one isn't too difficult. It used to gross me out completely but it doesn't seem weird at all to feed him through a machine now. Oh and his diapers still look and smell like mustard. Sweet Sharalee is still pumping every day. It was hard when she realized she wouldn't ever actually nurse him. You just kind of assume he would catch on to the whole sucking and swallowing. But he's still got his own time frame.

Koby is such a happy baby. We are seeing moments where we see the "light" turn on in different parts of his brain. Yesterday I woke up at 6am to feed him. Sharalee was already at the gym, and he will sometimes sleep through his first feed of the previous day was exhausting. Well, I picked him up and when I got him ready for his medicine he opened his eyes at me and gave me the biggest smile I've ever seen. I felt like he was saying "hi dad! I know you! I recognize you now!" And he started to giggle. I have seen him smile a lot lately but he will often smile for strangers, so I wasn't taking any credit. But yesterday I felt he was ready to send me a message. It meant a lot to me.

Here is Koby with one of his awesome therapists. Krew is encouraging him constantly. Krew smothers Koby. And we are ok with that.







He's getting used to this little bouncy toy thingee. He struggles to hold his neck up. This morning Krew felt that Koby was getting tired so he crawled underneath him to make it easier for Him to reach the floor. It was all Krew's idea.





He did this on his own.