The other day a friend of mine sent me some quotes from a Tim Keller book she had read. One that really struck home with both Rob and I was “You don’t really know Jesus is all you need until Jesus is all you have." We both feel that without Jesus in our lives we would be in such a bad place. When you go through something that rocks your world you get to a point when all the things that used to matter don't anymore. We get so caught up worrying about so many things in life that we lose focus on what is important. Jesus loves us and died on the cross to take away our sins....that is all that matters. What is important is that we have a personal relationship with Jesus and that we serve Him and honor Him in everything we do. Sure we need clothes, food, shelter, family, friends...all of those are important but at the end of our lives all we will have is Jesus so that is where our focus should be. Without Jesus we would not have the hope we have right now...that is what allows us to still have joy in suffering and keeps a smile on our faces.
My last post I was praying that Rob would come home on Monday but apparently God wanted me to exercise some patience. I arrived on Monday first thing all set for a busy day and hoping for Rob to get discharged however that was not what the day looked like at all. Around 1:30pm Desmond (SLP) came by to assess Rob's swallowing again. He still felt that Rob needs to be on thickened fluids and a blenderized diet but he gave the ok to go home and practice swallowing until he feels comfortable with additional things. That was the good news of the day....the bad news was at 5:30pm after waiting all day we found out the doctor wasn't coming in that day. Since Rob's surgery was at a different hospital we were waiting on a different doctor to discharge him and we didn't know his schedule. I was beyond frustrated with the lack of communication and needed to vent so Rob encouraged me to spend sometime away from the hospital with a friend that evening. I did go back to see Rob and played a game in the atrium but I left a little earlier than normal and hung out with a friend for awhile. Rob is a smart guy and knew I needed some time to chat and it turned out to be a good thing for both of us. After some fresh chocolate chip cookies and a chat I had a much better perspective.
Tuesday morning came along and by 9:30am the doctor had come by and given the ok to go home. Rob messaged me and said he would be ready in a few hours and that Isaac and I could come and get him. He got the rest of the staples removed and the IV taken out. Once the discharge papers were in order he was free to go. The smile on Rob's face as we drove away was priceless! The feeling of having him come home is unreal and Isaac just kept saying how happy he was that Daddy could come home.
Now that he is home he is busy recovering from surgery to prepare for radiation and chemo. He is able to do some normal things and is much more able to do things than last time. He is happy to be sleeping at home again and has been having very good nights which we are very thankful for. The thing that takes up the most time (besides sleeping) is eating. Food needs to be pureed and for the most part drinks need to be thickened. You would be surprised at what you can puree when you don't have the option of eating it whole. For the most part Rob has been eating the same food as Isaac and I but it just needs prepared a little differently. Continue to pray that Rob is able to regain his ability to swallow and eventually chew. It is very important that he doesn't lose weight right now so he is as strong as possible for chemo and radiation.
On Thursday this past week we headed to cancer care to meet with Dr Butler, the radiation oncologist. He explained that Rob will have radiation 5 days a week for 6 1/2 weeks for a total of 33 treatments. They made a mesh mask of his face and neck to ensure accurate placement during treatment every time. It will take about 2 weeks for the team to figure out Rob's exact treatment needs. His first treatment will be on October 20th and will last into the start of December. We are also still waiting to see the medical oncologist about chemo but as far as we know Rob will receive 3 treatments of chemo while he is having radiation. Hopefully we get an appointment to meet with the chemo team this week.
Rob is nearing the end of his E.I. payments and will switch to Long Term Disability (LTD) with the school division. This week we are meeting with the person that is in charge of Rob's case. Pray that everything goes smoothly and his payments start as soon as he is eligible. We have a few weeks before LTD starts and E.I. will already be done so we are praying that things transition quickly and we will not have to wait for payments.
Over the next 2 weeks Rob will be focusing on resting and recovering from surgery, keeping his weight and strength up and practicing swallowing and talking. It also gives us a chance to have some time as a family when I am not working. Today we were even able to attend church together!
Our journey is far from over but we have made another huge step towards recovery. We continue to pray each day for Rob to be completely healed and we know our God can do that. Thank you for caring and praying with us.
Love Karen
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