Seven Weeks

As time marches on and Koby begins to grow we will try to keep up with periodic updates on how things are going for Koby and the rest of our family.

Koby is such a joy to have at home and around family. The other kids haven't grown tired of holding him and loving him. They especially want to hold him while we read from the scriptures as a family each night. He's an especially big draw at this time because they are not focused on anything else, and it gives them the chance to really spoil him altogether, at the same time. He had his first smile the other night while Kinzy (13) was holding him.

We have eased off of the pump that has been feeding him, and have switched to feeding him with gravity feeds through a syringe. We are happy to see him progress to this. Up until this past Saturday we fed him on a continuous pump from 8pm to 8am. He would receive 20 ml of milk every hour. He gets very agitated when receiving the food, so he remained fussy through most of the night. Saturday night we began the syringe feedings. At 9pm, midnight, 3am, and again at 6am we have to get up and feed him, but the feedings only take about 10-15 minutes each time. This allows him to get back to sleep quicker (he wakes up once the food hits his stomach). So we can get a couple hours of sleep here and there. On Sunday morning he slept for 3 1/2 hours straight, which was the best he has done so far.

Last Thursday my Dad stayed over and helped with Koby throughout the night so we could get a little sleep. The following night Sharalee's sister Tasha and her husband Scott stayed overnight. We were able to go out on a date just the two of us. Wow this was such a wonderful much needed break! They then kept Koby downstairs in the basement and got up with him so that we could sleep. We woke up Saturday morning feeling like we could conquer the world. It's amazing what a little bit of sleep can do for your energy and positive outlook!

Getting him settled, especially at night, is tricky. He likes to maneuver his body in weird positions and often falls asleep with his head like this:






Today, February 16th, we met with the Neurologist. We were able to spend 45 minutes with the doctor and asked a ton of questions. As of today they have now officially put on Koby's records that he has cerebral palsy. The doctor told us this during our last visit, but hadn't added it to his records yet. This is going to be helpful to have as the official diagnosis on his medical records, as he will be able to receive special attention from medical professionals moving forward.

As the neurologist evaluated Koby again today he said that, based on what he is seeing and how he responds to different tests, his experience would lead him to believe Koby will "have clumsy control" of his limbs as he develops and gets older. He said he sees him walking, but with difficulty finding a rhythm when it comes to walking. Things can change. But that is his best educated guess at this point. I can honestly say that this just doesn't bother us. It's weird because maybe it should bother us to hear this. But it just doesn't bother us and doesn't even feel like we should worry about it now. It's almost not possible to describe the feeling other than to say that the worry has not been allowed to enter our hearts yet.

We are adjusting to life with six children. We are now trying to slowly take responsibility for ourselves to cook and clean and get our kids places and show them love and spend valuable time with each of them. It's an honor to be parents but boy it can be exhausting and hard too:)

I will be honest, we are doing our very best to stay positive and handle everything with a grateful heart and thankfulness. We are doing pretty good at that but we still have our moments of feeling overwhelmed. We also realize everyone reading this has similar feelings at times. So it's a normal part of life I guess.

We've found that some laughter always lightens a heavy heart. It's great medication for stress too. Last night was our first night trying to figure out the best way to do gravity bolus feeds for Koby instead of the pump. It was a comedy of errors for the flies on the wall I'm sure. It's so unnatural to feed your sweet baby through a tube, especially when you want to hold them close and comfort them. It's hard to do that while trying to keep the syringe at the right height and angle. Sharalee & I were laughing at ourselves as we awkwardly tried to get the milk to go down while trying to keep Koby calm. You see if he's upset or bearing down at all the milk comes back up the syringe. As with most everything else concerning Koby there's a lot to balance at once.

When we wake for Koby's 3am feed and we have trouble falling back asleep I still like to turn on an old Office tv show rerun and laugh at Michael Scott and Dwight K Shrute. The other night we watched our favorite movie "What About Bob" (Bill Murray) with our kids, explaining that it was both Sharalee's family and my family's favorite movie the we watched over and over growing up because it was so funny. It was just what we needed.

Great things are ahead for our family. We feel so blessed and feel of the sweet comfort that comes from turning to the Lord each day.