Jeff's Sleep Study

One of the things that I like best about my wonderful husband is his sense of humor. He has an amazing way of making me laugh even when there is not all that much to laugh about.

Jeff was going out of town for the week and so the night before he left, he took night time duty with Jared. It was not the best of nights, which was the norm. I thought that he would be so grumpy in the morning but he surprised me with this.

Jeff's Sleep Study Results

He turned a rotten night into laughter. I have been looking at this paper all week with a big smile on my face. Thank goodness for a husband that can make me laugh!

We Were Warned!

We were told by several people that the recovery following a tonsiladenoidectomy was pretty rough. They were right! Its been a rough week and a half. Jared is starting to do better, but sleeping has been very challenging and we are all exhausted! Hopefully things will start to improve soon.

He has been pretty lethargic and pretty much is happy to sit on the couch and watch movies all day. Except for one hour a day! On that hour, he wants "Walker outside!" It was such a beautiful week last week that we went out walking everyday. He is slow, but he loves to walk outside and we would sometimes walk for an hour! He is really enjoying this walking thing. Hopefully he will surprise us soon and just walk right out of the walker! We are getting some new braces for him that will hopefully provide some more stability and his PT really thinks that this will help. But, for now, he is a walker master. Unfortunately the snow is back this week, but hopefully we'll be able to hit the pavement again soon!

Surgery Over

The surgery is over and all went well. We spent one night at the hospital and were able to come home the next morning. Jared is doing as well as expected. As long as I keep his pain meds. coming at regular intervals, he seems to be handling the pain ok. Although he doesn't want to swallow anything so he keeps his mouth open and lets his saliva dribble out rather than swallowing it. At times like this I am so grateful for his Gtube! I can keep him nourished and hydrated without him having to swallow. He is content to just sit and watch movie after movie. Veggie Tales and Curious George are his preferred movies. I just wish we had more than one Veggie Tale movie. The short one that we have is getting a little bit old after about the 100th time watching it in the past 2 days! Jared is a sweetheart. He is sweet even when he is miserable!

I was nervous about this surgery but as soon as we got there and started going through the routine I calmed right down. I guess that is one benefit of having the hospital as your second home! It doesn't feel as scary! It also helps that I feel like we have friends there now. One of the Nephrologists came by to check in on Jared. He is a great doctor and makes me laugh. I also appreciate him because he respects my opinions and makes me really feel like I am part of team Jared. Not all doctors are so respectful. Our favorite lab tech also showed up at our door when it was time for labs! How we got that lucky I don't know, but it was sure nice to see his face. He, as usual, got Jared's blood on the first poke and Jared knows him well so that always helps. I was just grateful that we were able to come home the next day. Nights at the hospital sure make you appreciate your own quiet, bed!

Jared goes in for a follow-up with the ENT in a month. They will retest his hearing then and we will also see how his sleeping is going. Hopefully those results will be better, but if not, then we will go with the flow! Meanwhile, I am going to enjoy snuggling with my JerBear!

Surgery

Jared has surgery tomorrow. He is getting his tonsils and adenoids removed and tubes put in his ears. I wonder if we can get a three for one special? :) For some reason I have been more nervous about this surgery than I was for his transplant! How crazy is that? But, I think that I have figured out why. His transplant was a life or death situation. Without a transplant he would not live so there was no question that it was going to happen. Also, because he was on the waiting list I had absolutely no idea when it would happen. When the call did come it was such a crazy, surreal moment and it was done and over before I had too much to time to freak out about it! This surgery is a common surgery that many kids have but I still worry about infection and complications. And I feel bad putting him through more pain. So, I start to doubt myself, wondering if I have made the right decision to put him through this. I have also had way too much time to think about it! I'm sure that he will be fine. He is one tough little guy. It just makes me sad that he has to go through so many unpleasant things. People have told me that the recovery is pretty miserable. So I just plan on doing a lot of snuggling over the next couple of weeks!

Some of Jared's Angels

Jared had an appointment today with his medical, physical, rehabilitation doctor. Wow that is quite the title! I wanted her to see how Jared was walking because of a few concerns that i have so I took his walker with us. Jared hasn't really walked anywhere with his walker except for at home, so he was so excited to be able to walk at the hospital today! He was absolutely in heaven! He was so excited to be able to go where he wanted to go. He loved walking on and off of the elevators by himself and you could just tell by the look on his face that he loved the feeling of independence that it gave him. He was so HAPPY!

As we were getting ready to leave, we walked by the lab and I thought that Jared's favorite lab techs would enjoy seeing him walk. Luckily, they weren't busy at that moment and they all came running. They were so excited to see him up and walking! They have only ever seen him in his stroller or in my arms. One of our favorite lab techs is Joel. He is so sweet to Jared and is able to draw Jared's blood in one poke every time! That definitely gets him bonus points! :) He has been drawing Jared's labs for a long time now and has been watching him grow up. As he was watching Jared walk he started getting emotional. He was just so excited to see Jared walking! These awesome lab techs. have to be the mean guys day in and day out as they have to poke child after child. It must be so nice for them to see a child that has been so sick, developing and happy! We have been so blessed to have such amazing "angels" caring for our Jared. They sincerely love and care for him and knowing them has been one of the greatest blessings Jared's challenges have brought us! Thank you our dear angels!!!!

Thoughts

My growing up years were perfect. My parents were wonderful, I had great siblings, I grew up knowing that I could do anything that I put my mind too, I had fabulous friends who were positive influences in my life, and I knew that I was a daughter of God. To say that I had led a rather sheltered life would be an understatement. Life was good. Life was easy.

The older that I get, the more I am realizing that life is hard! It is full of so much happiness and goodness, but it is also full of such deep heartache and sorrow. Our little family has had our own challenges, but ours seem so easy compared to the challenges and sorrows that others experience. Sometimes I just want to yell "Enough! These good people have had enough!" My heart breaks for so many.

Today, a beautiful, perfect little angel, returned home to live with her Heavenly Father. She was 11 months old. She was born with a very serious congenital heart defect and has struggled from the very beginning. Her family is an amazing family full of such incredible faith and love. She received a heart transplant a week ago but it was not meant to be. The heart went into failure immediately and today she returned to her heavenly home. It is amazing how a family and a child that you have never met can become such a part of your life. I never met Gracie and her family personally, but I feel such sorrow for them. Little Gracie touched so many people in the time that she spent on Earth. She has been a blessing to so many and I am so grateful for the knowledge that we have that she will be reunited with her family and they will be a family forever!

One of my dear friends that I grew up with is currently in the middle of a divorce. Her husband is addicted to some very dangerous things, and after giving him 12 years of "another chance", she feels like staying with him would begin to influence their children in negative ways. After spending days and days praying and fasting, she feels that it is time to move on. The hardest part of this decision for her, was knowing how difficult it would be for her children. This decision was not made lightly. She has agonized over it! When we were happy, innocent, kids, we had such grand plans for how our lives would turn out. This was not part of the picture! But Holly is amazing! She has such faith, and love, and trust in God, and she knows that somehow, everything will be alright.

Yes, life is hard. But the amazing part of trials, is the growth that takes place within us as we struggle. I look back on different trials that I have experienced and although they were so hard, I wouldn't change them. I can see the person that I have become and all that I have learned, and I wouldn't change a thing. Heavenly Father knows us so well. He knows what we can handle and what we need to be able to get through such difficult times. I have often felt that angels have surrounded our little family during particular challenges and I know that we have been given so many wonderful tender mercies during times when we have needed them most. Sometimes I wish that I could still hide away in my little bubble of innocence, but that is not God's plan. We cannot truly appreciate the Joy without first experiencing the sorrow. This knowledge doesn't take away the pain, but it gives us hope of a better day!