It's been about a month since we've posted. Day by day there hasn't been a lot of change, but looking at what has changed over an entire month we are realizing that there's a lot of updates to share.
Last month we shared how Koby has "moderate to severe" hearing loss. We've ordered his new hearing aids and we should have them in another week or so. This is hopefully going to allow Koby to recognize our voices better, and lead to him developing many important things that he needs for his progression. If we slam a door he will flinch at the loud noise. Otherwise we can't tell what he hears and understands yet. This is Koby being fitted for his hearing aid. He wasn't loving the process:)
MUCH NEEDED HELP ARRIVED
Up until about two weeks ago Sharalee and I have been trading off nights with Koby. He was still needing food at midnight, 3am, and 6am. Sharalee's youngest sister has come to the rescue and moved to Tennessee to help us out. She has brought us so much relief. We didn't tell our other kids about it until she was actually here. They are especially loving her staying with us. She plans to be here for the summer and helps with so much. Since she is 19 and full of energy she is taking the midnight feeding. And the doctor has finally given us approval to let Koby skip his 3am feed. So we are actually starting to get some rest. This has been a tremendous boost to our sanity. Yeah for Emily being an answer to our prayers!
BABY BLESSING
On April 10th we brought Koby to church and blessed him in front of our congregation. All of our parents and many other family members and friends were able to attend. It was a great day for us. It was another reminder of how much progress Koby has made since his arrival into the world. Sharalee's parents and brother flew from Utah along with their exchange student Joe from Denmark. And Sharalee's sister Cammie completely surprised us and drove two days from Canada to attend the blessing. We were eating dinner at a restaurant and she walked in the doors and we flipped out and cheered when we saw her. It was an emotional reunion and meant so much to me (and all of us). She stayed an extra week and helped out so much.
Our lovely nurse Amanda has become part of our family.
KOBY'S PROGRESS
Koby is making progress a little at a time. We've tried a lot of different medications so far. He had been projectile vomiting so much that he wasn't gaining weight. We were very close to doing another surgery for him which would entail closing off his esophagus to where he couldn't throw up. It's an intense option but we were running out of options. Shortly after meeting the GI doc we met with our neurologist again. He thought that his neuro shaking could be affecting his stomach and spit up issues. So we are trying a new brain Med called gabapentin. He spit up a bunch at first, but it now seems to be helping. He's gone from spitting up every other meal to now only once or twice a day. This is a relief. His weight gain is still very slow--real close to 10 pounds. He's gained a total of maybe 3 ounces the last month. This is very little for a baby. We are doing our best to increase his weight, but at least he isn't losing weight.
The shock of Koby's first four months is now becoming a normal part of our lives. We enjoy the weekends together as a family by staying home, watching movies together, and just enjoying each other. We aren't at the soccer fields or basketball courts but that is ok. Sometimes simplicity is the best medicine. I'm 37 but feel like I turned 38,39,40, and 41 the past four months.
Although it's been a rough and tough four months it has been life changing in so many good ways. Our family is closer than we've ever been. Our kids have stepped up and been better and more loving. We love deeper now. We have more empathy for others that struggle since we struggle more now. We know what it's like to hurt inside and yet still smile and be happy and be excited for the future.
We take victories in littler things now. Sharalee has been awaiting Koby's first smile. Some babies with CP never smile or show emotions. So it was exciting that he smiled for the first time last week! It was such a pleasant site to see. It's a small step for most but such a big step for us, and a relief to see. The future is so bright right now. We can just feel it and we know it. You will see:Koby is going to change the world and make it a better place. We have faith in our miracle boy.
Here are a few other fun pictures of everyone from the last month.
Krew and Kamden like to choose their own clothes.
Kyle in his school play.
Koby still loves to sleep in awkward positions.
2 comments:
Steven and Sharalee: I need to tell you how far reaching your trial/triumphs and spiritual strength are. Reading your posts, help bring me back from the edges of problems with a clearer, more spiritual view. I'm guessing others take strength from your words too, and I'm also guessing you don't fully realize how much good your little family is doing for so many. We are continuing to remember you and Koby in our prayers. (I believe you when you say great things lie ahead for this little boy!)
So happy to see progress. I'm glad that Emily can come help. I know she will be a treasure for your entire family. Thank you for sharing your experiences. It makes me grateful to be part of your extended family. Your faith and perseverance are like pioneers from our heritage. The entire Nabrotzky family is inspiring. Thank you!
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