Looking to the Future

We haven't posted for a few weeks, partly because we haven't felt there has been a lot of change with Koby lately. But as we look back at our post from two weeks ago we are reminded that there are more changes and updates than we realize. When you are living it day by day it all seems to blend together.

SLEEPLESS NIGHTS

Our nights do include sleep at night, just not a lot of it. Lately we feed him around 9pm, then again at midnight. After that feeding Sharalee and I try get some sleep. He then usually wakes up around 3am for a feeding, and then again at 6am. We often switch off on taking the 3am feed (actually Sharalee takes the majority of the 3am shift, and I just do one weekday morning and one or both weekend mornings). Last Saturday Sharalee woke up around 7am, and was so excited that she was finally able to get some rest. She said that it was the longest night of rest she's had in a long time. I was confused--we both woke up together that morning to feed him at 3am. She then said she didn't remember waking up at 3am at all, and didn't think she was involved at all. We have a binder that we keep near his feeding equipment, and in this binder we keep track of all of his feeding times, quantity of food, and medicine's received. I told her to take a look at the binder and see what we wrote down for the 3am feeding. (Side note: we started tracking his feedings in a binder because everything is blending together now, and we just can't often remember the last time we had fed him, or given him medicine.)



For the 3am time slot the entry was all in Sharalee's handwriting, but it was a bunch of jumbled numbers and notes. Rather than writing down what we gave Koby she wrote "1324.94/4 2/20/16." In other words none of it made sense. She was so tired that she didn't remember waking up at all, and we had spent a good 30 minutes up together, and even had a conversation together after we laid him back down. As you can imagine, we are a bit tired still:)















BONDING WITH OTHER NURSING MOMS

Now that is a statement you don't normally hear from a guy. But yes, I've been bonding with other nursing moms lately. I better explain... Sharalee's two sisters, Cammie and Kelsey, both gave birth recently. Cammie had baby Madelyn two weeks ago in Toronto, and Kelsey had baby Ava this past week in San Fransisco. On Saturday morning it was my turn to get up. Koby woke up at 245. He was up until 4am. The house was dead quiet. But then I remembered that maybe my two sisters in law were awake and nursing their girls. Sure enough they were, and we spent the next half hour or so texting each other and talking about what it was like feeding our kids. Ha!! This was a first. My sister Mindy also just had her fifth child in Nebraska.
They started to talk about how their bodies were recovering from the labor and delivery. About that time the nostalgia of this bonding moment wore off for me, and I left the conversation. But it was good to be a part of the "nursing mommy group" for one night!










GAINING WEIGHT

Koby was born at 5 lb 6 oz. His weight as of Friday was 8 lb 1 oz. Not bad, but we would expect that he would have gained a lot more by now. We feed him around the clock, about 50% breast milk and 50% high calorie formula. He's getting a lot (about 3 oz every 3 hours which is quite a bit). He is not gaining weight because he shakes so much that he is burning a lot of calories. Much more calories are being burned than an average baby that mostly sleeps and poops. His muscles are so tense that it's like he is exercising. He settles down when someone is holding him, but if you leave him alone he gets frazzled and shakes his arms and legs a ton. His muscles are very tense. When he is really tense and worked up it is difficult for me to even pry his tights fists free to release his fingers. It's like he's doing Kenpo exercises all of the time.




WIDE AWAKE FOLLOWED BY DEEP SLEEP

Another interesting thing that Koby does is scream and shake with tons of energy, followed by immediately falling asleep. It's like a switch goes off in his brain and decides that he should sleep. Then, 30 seconds later he is back and wide awake, fussing right where he left off. It is like he is playing freeze tag with himself. He's moving around and then hears someone yell "freeze" and decides to stop moving altogether. Then he starts moving around again. This pattern continues throughout the day, but is worse during feeding times. He also has a really fast twitch in his feet. It twitches so fast like it's almost vibrating.

LOOKING (TOO) FAR DOWN THE ROAD

I made a quick stop at Costco the other day to pick up some batteries and a few other things. It was going to be a fast stop, as I was anxious to get home. The lines were unusually short so it only took me a few minutes. After checking out I headed towards the door to show the worker my receipt, as usual. I was greeted by a familiar face that I've seen working at Costco dozens of times. He's usually held up by crutches or sitting on a chair with wheels. He's always got a smile on his face.



When I smiled back at him I could picture my own son. I didn't want to disrupt the other people needing to show their receipt (isn't it weird that you have to show your receipt for the stuff you just bought?) and so I wasn't going to say anything to him. But no one else was behind me so I took a second and asked him if he had cerebral palsy. He shook his head yes. I then told him that my two month old has been diagnosed with CP, and he immediately turned to me and opened up about his life.




His name is Matt. He asked me how severe my son's diagnosis is. I told him it is still a little too early to tell. He said that he was able to speak at a very young age but he really struggled with walking. He's had thirteen surgeries so far. On his back. On his left arm. On his legs. On his ankles multiple times. His ankles "dropped" straight and he had to have casts put on them to keep them from dropping. And then they were surgically angled to allow him to walk.



He then started to really encourage me. Matt said the key is that Koby has a loving support group. That is key. Matt said that he has come so far because his parents really pushed him to work hard and overachieve. And he hated that but he's now so grateful because he's become so strong. His left arm doesn't work very well. His legs don't really work. But he said his mind is sharp and he is thankful for that.



He said to teach Koby he can do great things. Matt qualified to have a drivers license. He said he doesn't drive because he doesn't feel safe driving. But he did it to show that he can achieve anything he wants to. I asked to take my picture with him and he said he wanted to meet Koby and encourage all of our family to love him and give him support. We talked for a good fifteen minutes. Matt is one good dude.



I went back to my car and called Sharalee. By the time I got to my car I was crying, filled with gratitude for our little boy. He will bless us all.



We sometimes just want to know what his life will be like. We want to know if he will walk or talk. Will he understand anything? Of course it is too early to tell, and this is probably a blessing. It's better to have to go through life with faith that things will work out for the best, and to just have the attitude that we will try to stay positive and upbeat. For the most part we are upbeat. Sometimes we feel a lot of despair. Man we can get overwhelmed! Last night Sharalee had a church meeting and so I was home with Koby and our 9,7,4, and 2 year old. I let them stay up too late and gave them too many treats. I just didn't feel like telling them no to anything they wanted. At about 10pm I finally had them in bed, and they wouldn't settle down. Krew (2) kept calling for me from upstairs, and it was usually to ask for yet another sip of water, or just to ask a question that wasn't important. After going up and down the stairs for the fourth time i had had enough. Koby needed to eat, and he was really jittery. So I went up stairs and let my anger get the better of me. It was stupid to be upset, but I told them it was too late and to go to bed, dangit! I'd love to make it look like we are handling this situation with a perfect attitude and with perfect charisma and strength. But I'd rather share that we struggle, even though we have a lot of hope for the future. Being a parent isn't like taking a test in school, where you have the possibility of getting a perfect 100% score. Parents aren't judged like a math or science test. We are graded for our effort, and just doing the best we know how to do. Hopefully our best is good enough.