James would affectionately tell you that I have a big sweet tooth, and as much as I hate to admit it, he's probably right. I will have to say that I come it honestly, though. Growing up, we had Blue Bell most days after lunch and dinner. The Holmstrom family has been known to have dessert after lunch, dinner, and some of us may have even had dessert for breakfast a time or two. Cake and ice cream has dairy and eggs... that counts right?!
Anyway, one of my favorite things on the menu at our go-to restaurant is the S'more Pie. I'm not a big pie person, but that pie is a pregnant woman's dream and it was the sole reason that I wanted to eat there that night. We had a nice dinner and then James had another drink, since he's drinking for two these days ;) , and I ordered the S'more Pie. The only dessert that they didn't have that day was the S'more Pie. Oh the irony! Didn't see that coming. I had built up this whole dessert idea in my mind and I couldn't go to bed without having something to appease myself. So, I went home and made my own version of oven baked s'mores. It wasn't nearly as good as the one I'd been hoping for, but sweet none the less.
We made the trip to Dallas this past Monday, as Hunter was scheduled to receive cast #4 yesterday.
Here a few pictures before casting...
Hunter was so glad to see his Daddy and he is becoming his little "mini me".
A little comic relief before dinner.
Up early and ready to receive cast #4 at Scottish Rite.
Waiting to be admitted.
I've given you a little glimpse when we've talked about prior casts about waiting to be taken back into surgery or just waiting period. We're not so much for waiting. In fact, we could do without it all together, but that's how things go. Hunter is usually starving, as he is a big breakfast man. That is the best meal that he eats all day, so when he can't eat and we have to distract him, things get a little hairy. I have learned to bring a "hospital" set of toys, videos, etc. that Hunter hasn't played with in a while. That usually works for all of 2 1/2 minutes.
Yesterday was a good day. It didn't necessarily end the way that we had hoped, but a good day none the less. It was a good day for many reasons. One big reason was that our waiting was filled with the best distraction we could have asked for. I am a member of a closed Facebook group for parents and caregivers of littles with PIS. The group is run by the founder of ISOP and a couple of parents who have been around the block with PIS. It has been invaluable to me in terms of education and building relationships with other parents from around the world. I've gotten to know several families that have received treatment at Scottish Rite and one special family that is actually currently receiving treatment there. We had the great opportunity of meeting in person yesterday, since our little people were both undergoing procedures. We were so excited to meet this sweet family and Hunter was thrilled to make a new friend. His new friend, Baylor, received halo traction for her scoliosis and will be staying at Scottish Rite for the next two months.
Hunter gave Baylor a few things to make the days in the hospital a little more fun. Baylor and Hunter chased each other down the hallways and she pulled Hunter in his wagon and gave him a tour while we parents visited. I'm sure it was a great distraction from hunger pangs for both Hunter and Baylor. Beautiful Baylor is a remarkable little girl and we were so blessed to have been able to meet she and her family. Lucky for Hunter, he will get to visit Baylor again in October when he receives cast #5. Until then, we will keep in touch and keep sweet Baylor and her family in our prayers.
Hunter soon got called down to day surgery to take his goofy juice. He had done so well as the nurse took his blood pressure, weight, and temperature. When she began to give him the prep medicine he was very upset and resistant, but it quickly took into effect.
Hunter's doctor came in and spoke with us prior to surgery. We discussed the tightness of the previous cast on his stomach. He decided to make the tummy window, which I affectionately refer to as his tickle hole, a little larger, which would in turn, make the cast sit lower on his waist. Hunter went back about 10:10 a.m. and was finished with casting around 11:00 a.m. His doctor came back in and spoke with us before they brought Hunter back to us. He thought that he had gotten good results and said that his skin looked great. He said that as he pushed in traction, his breathing was steady. This is a good indicator that as he continues to push for correction that he will be able to take more traction and gain continued improvement. He said some kids exhibit difficulty breathing at this point during the procedure, so we were thankful for that. We discussed the potential results and I asked several questions. Hunter was at 25 degrees in cast #3 and his doctor was hoping to get him into the teens in cast #4. Characteristically, he has been getting about 7 to 10 degrees of improvement with each cast.
They wheeled Hunter in and he was a tad grumpy to say the least. Once he was able to stand, we took him down to X-ray. When we returned, I sat him down and checked his legs in a sitting position. The cast seemed to be rubbing on his thighs, so his doctor came back in and trimmed it before we went home. He told us that since we were still there that he would go read the X-ray results and come back and talk with us again. The doctor returned with copies of the X-rays and a look of disappointment. Instead of getting into the teens, Hunter only went from 25 degrees to 22 degrees.
February 19, 2014 August 19, 2014
60 degrees 22 degrees
The results weren't exactly what we or the doctor had hoped for, but improvement is improvement. Better to be dancing forward than swaying side to side or two stepping backwards. Our concern is that we have a lot of unanswered questions. Generally, with PIS, you'd like to get as much improvement as possible before the age of 2. We are blessed beyond measure that we started casting when we did and are being treated at Scottish Rite, which is the best of the best. As Hunter quickly approaches age 2, it is hard not to worry that the window of improvement will decrease or that we may never get to the point where he can have three consecutive casts below 10 degrees, which is the ultimate goal.
This morning, I started reflecting on a few things as James and I talked about Hunter's results. James pointed out the positives to me, as he is always great about doing. He asked me to look at the X-rays and study and compare the state of Hunter's collar bone and hip alignment in both X-rays. If you look at those two areas there has been vast improvement. We will continue to look at the glass half full and press forward.
When I was a freshman at A&M, my dearest childhood friend lived a couple floors away in the same dorm. I remember her roommate talking about the Garth Brooks song "Unanswered Prayers" and discussing how much she disliked the song and didn't believe there were unanswered prayers. I think that the wording leaves room for interpretation. I feel that if God directly answered every want and prayer exactly as it is prayed, then I would probably know a lot of lottery winners.
As we walk through this life we experience happiness, fear, disappointment, triumph, failure, heartbreak, and love. There were times that I desperately prayed for something or someone and the prayer didn't go unanswered or unnoticed, but it wasn't necessarily answered the way that I had hoped it would be at the time. Those prayers were always answered in His timing and according to His perfect plan. While those prayers were answered differently than I had prayed them, they were answered better than I could have ever dreamed or imagined. I firmly believe that God's plan allows us to experience pain and disappointment, along with joy, in order to mold us into the people that we are supposed to be. I feel that this helps us to better appreciate God's plan for our lives. All we need to do is to continue to pray, grab a fork, and appreciate the sweet things as they come.
As always, thank you for reading. Please continue to share Hunter's story and keep he and his progress in your prayers. Pray for his new friend, Baylor, as she receives treatment, as well.
Hunter, James, and I are going to check in on Hunter's new sibling tomorrow, as we have an anatomy scan to look at the baby's organs and confirm the gender. We found out the gender at the end of July and once we take a another look tomorrow, I will have Hunter do a special gender reveal for you all.
Stay tuned and Blessings to you all!
Hunter is cast #4. He's already back to drumming with anything that will make noise, playing with his tractors, and antagonizing our golden children.
It is hard to believe that he is almost 2! He is looking so much more grown up all of a sudden. Miss you guys!
ReplyDelete