I got tears in my eyes when Drew named the newest video, “It was Worth Going Here.” He is referring to the fact that having surgery and living with all unpleasantries of recovery will be worth it if he is pain-free in the end. Although Drew does have difficult moments, for the most part he is positive and enjoying the days with his brother and sister. Of course, keeping him occupied is one of our challenges. Drew loves the Anamoto videos, so today I suggested we create one using pictures from the days in the hospital. First I collected all the pictures and told Drew he could choose which ones we would use. I clicked on each picture and suggested he say YES or NO. After he responded with a YES to the first 15 pictures we agreed to just include them all.
Next we needed to choose the music. Drew was adamant that it be a song about “friends” since so many friends had visited him in the hospital. We spent over an hour listening to all available songs. None of them was exactly what he had in mind except one that we had already used. Drew did not think we should use a song more than once. Finally I suggested we use that song for now with the promise that tomorrow we’ll continue the search for the perfect song about friends. (Have I mentioned that Drew tends to be a bit of a perfectionist?)
So, here is Drew’s video as it stands now:
Please continue to pray for this amazing little boy.
Nana Barb
I think a hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles. Christopher Reeve
First we want to thank each and every person who has sent good wishes, prayed for Drew and been thinking of Drew and his family. Drew came home on Saturday morning. While we are certainly busy, we are doing just fine. Today we began, successfully, to decrease Drew’s pain medication. We also began to develop a plan for keeping him safe and happily occupied for the time he will spend in his cast. We have videos, books, and projects. We know that family and friends will visit. Hopefully the weather will continue to turn to spring so that we can even take Drew outside. Surgery is over and life is good.
I think you will enjoy the following video which was shot moments after we wheeled Drew in after his hospital stay. Karli was obviously very glad to see her brother.
Drew’s parade of visitors also continued last weekend. Drew loves Anna. He says she is the only “grown-up” that “doesn’t treat me like a kid.” Here he proudly displays the miniature elephants she made out of playdough.
Uncle Matt also stopped by to chat.
Best of all, Karli once again has her morning bottle snuggled with Drew in his bed.
I think it bears repeating: Drew’s surgery is over and life is good!
Nana Barb
We got the word: we’re going home tomorrow. YIPPEE! Before Drew’s surgery we were warned that recovery would be difficult and that families often say that they would not have gone through with it had they known in advance all that it entailed. I admit that there is a long road ahead of us, but I am confident that we are up to it.
Wednesday was a recovery and learning day. Originally I had pictured us spending the next five weeks in Drew’s room. However, it turns out that we can transfer him to a reclining wheelchair. After we learned how to transfer him we headed down to a live dog show in the lobby of the hospital. It was quite a party as Claire, Anna, Tommy, Auntie Kirstin and Papa joined us for the show.
I admit that yesterday was difficult. First the epidural was removed. We then worked with the staff to determine the best meds to relieve Drew’s pain, including making a plan for the future. Next Drew received a steroid shot in his right knee. Despite the cream applied to numb the area, Drew was quite adamant that the shot was very unpleasant. Finally, his catheter was removed. In other words, Drew spent a good part of the day undergoing uncomfortable procedures, although he did enjoy visits from Claire and Aunt Dana.
Drew also enjoyed sharing the craft offering at the end of the day with cousin, Tommy. It was great to see him enjoying time with his cousin after the difficult day.
Today was much better. Drew felt quite comfortable, only occasionally complaining about pain. That meant he was able to enjoy his many visitors. First his homeschool teacher, Miss Gretchen, arrived. After reading about the dog show, she thoughtfully brought a fun dog project to share with Drew.
Next Uncle Mark arrived–with Caribou lattes for mom and nana. (Thanks, Mark!)
Then Claire arrived–with lunch for mom and nana. (Thanks, Claire!) Yes, we have been blessed with thoughtful friends and relatives throughout Drew’s hospital stay.
We spent much of the day learning about how to care for Drew during the next weeks. He must continue to be repositioned every two hours, around the clock. We much watch for skin breakdown, learn about his pain meds, his feeds, how to move him in his cast, which parts of his legs can be moved and which cannot. The list is long, but there is no question it will be worth it since the goal is for Drew to be pain free.
We’ve had the best medical care available this week. Also, the support and education the staff at Gillette has provided has been amazing. Although we can always check in with them, we’ll essentially be on our own beginning tomorrow. Please keep us in your thoughts as Drew continues his recovery at home.
Nana Barb
Yesterday Drew was doing well enough that we were moved from PICU to a regular room. In fact, we were given the “luxury” room on the floor. The room is very large for a hospital room and, best of all, has a private bathroom. It’s a good thing that we have plenty of room as Drew has plenty of visitors.
Today the first to arrive was Uncle Mark. He came laden with packages, toys and movies to help Drew pass the time.
Next came Karli, Ry and Nikki. Each morning at home Karli enjoys her early morning bottle snuggled with Drew in his bed. Today the tradition continued in Drew’s hospital bed as Karli drank her after-nap bottle.
Soon Drew’s good friend, Anna, and her mom arrived, followed by Auntie Kirstin and Cousin Tommy. Tommy presented Drew with a bear that had been autographed by all the children in his kindergarten class.
Daddy came after work, and Papa arrived just in time for the dog show. Yes, there was a live dog show presented right in the clinic lobby. Eight kind and caring people arrived with their dogs promptly at 6:30 to entertain the children and their guests. I wish that these thoughtful souls could know what a difference this distraction made for one little boy. You see, Drew had been having a difficult day. He was quiet, occasionally shed tears and spoke of being homesick. However, once the dog show started he talked almost nonstop with the animation that is typical of the Drew we all know and love.
A big thank-you to everyone who took time out of their day and evening for Drew today. Our hospital stay is only about half over and the distraction you provided made a huge difference for this little boy.
I can’t end this entry without telling about an incident that occurred moments ago. Drew was sleeping peacefully as I was working on this post. I saw his nurse leave the room and return with the head nurse. Together they studied some red fluid that had been retrieved from Drew’s stomach. A bit concerned, they were considering contacting the on-call doc when I remembered that about an hour earlier Tommy and Drew had enjoyed a favorite hospital treat: bright red cherry popsicles. Whew!
May God continue to heal and to bless this very special little boy!
Nana Barb
Drew began complaining about his hip several months ago. It was a sharp pain that came when we transferred or repositioned him. Then he began to complain about his knee. Over the weeks, his knee became an almost constant discomfort. Stretching his leg helped momentarily, but soon we heard the refrain, “My knee, my knee.” We are blessed to live just miles from a hospital that specializes in neuromuscular diseases. We adore his ortho doc and trust him completely. Surgery to relieve Drew’s discomfort was scheduled for yesterday. Knowing that the surgery and recovery will be long and difficult, we tried to give Drew an especially fun day on Sunday. By afternoon it had warmed up enough for Drew to make a trip outside.
Drew is especially proud of his new boots.
Bright and early on Monday morning we headed for the hospital. Drew’s only concerns were blood draws and IVs. Once he learned that he would not get poked with a needle until he was asleep, he was amazingly brave. Note the two thumbs up in the image below.
Daddy changed into a gown so that he could stay with Drew until he was asleep.
The plan was to work on the alignment of his hips and keep them in place with titanium plates. To alleviate the knee pain, the hamstrings would be lengthened. Drew’s pain has been mainly on his left side, so the doctor decided to complete the left before moving on to the right side. It turned out to be a very difficult surgery. It took almost four hours to complete just the left side. At that point the docs decided that it would be safest not to proceed to the right side. That would have meant an extremely long surgery with blood loss that might be a bit much for an SMA child. The good news is that since they found the hip in such bad shape, there is a very good chance that the repair will eliminate his pain.
Although Drew left for surgery at about 8:00, it wasn’t until almost 4:00 that he was reunited with his mom.
Drew will wear a spica cast for about six weeks to keep his hip and leg immobile. It’s plastic, starting under his arms and extending to his feet with straps on the top. He must be carefully repositioned every two hours to avoid pressure point leading to bed sores.
Yes, we have a long road ahead of us. At least three months until Drew is back to normal. We can do it!
God bless Drew!
Nana Barb
Yesterday a package arrived for the Draz kids. It came from Lizzy and Jeanna and contained some Valentine suckers and some bubbles. Today the children took the bubbles into the bath and had a ball. As I have mentioned before, Drew loves the Animoto videos. He named this video “Valentine Love Bubbles.”
Lizzy and Jeanna, thank you for sending love bubbles and helping the Draz kids share the love.
Happy Valentine’s Day!
Nana Barb
PS If you can’t see the video, try using Firefox, Safari or Google Chrome rather than IE. If there is a blank space, click on the space, be patient and it should appear.
As the winter drags on, we have settled into a lock-down routine. During the week the boys play together, listen to audio books, work/play on the computer, watch a little TV and take care of routine things like treatments and baths. On weekends we try to add a few special events. Last weekend the cousins came over for a sleep-over. The boys LOVE their cousins. Drew and Tommy have been together since they were infants when they shared a nanny. As usual we took pictures and video. The next day Drew asked me to make a “music video,” otherwise known as an Animoto video. He loves these videos; we often snuggle together in bed and watch the older ones over and over. Drew chose the name–Cousins Forever–and also chose the music. Enjoy:
When Saturday rolled around again, Drew would have loved a repeat of the sleep over. However, he had to settle for a morning visit from Auntie Kirstin and Tommy. The rest of the day was filled with family fun. Dad was busy installing a new hot water heater–YEA! So, the boys played together most of the day. A favorite pastime is “swinging” in the sling that we use for Drew’s lift system. My personal favorite clip in the following video is when Drew uses the vibrations of his vest to play the harmonica.
Only a few more weeks–or is it months–until summer!
Nana Barb
If you smile when no one else is around, you really mean it. Andy Rooney
PS If you are having trouble viewing the videos you might try using Firefox or Safari. Internet Explorer doesn’t seem to play them.
Think about the best gift you ever received. It was probably unexpected–that is, something you hadn’t even thought of getting for yourself–and meaningful in a personal way. Today I received just such a gift. The UPS man dropped off a package shortly before Jen arrived home. She opened it and presented me with a lovely cross engraved with the phrase “on my side.”
You see, “on my side” has a very special double meaning for Jen and me. First, it is, perhaps, Drew’s most common utterance. Because he is unable to reposition himself, he frequently requests to be turned to his other side. But, more significant to Jen and to me it represents the numerous people who are on Drew’s side. Friends, family, teachers, doctors, the list goes on and on. Drew is a very happy little boy who loves his life, thanks to everyone who is on his side.
Thanks, Jen! I will cherish your gift.
Nana Barb
PS Thanks to everyone who voted for the Gwendolyn Strong Foundation in the Chase Facebook vote. I know I bugged you with requests and numerous emails. However, it was well worth it. We took sixth place and received $100,000 for research. If you ever find yourself with a few extra dollars, please consider sending them to the GSF. They will be used to find a treatment/cure for SMA and every dollar counts.
We’re about midway through the cold/flu season. Ever since we instituted lock-down all of the Draz kids have been healthy! No days in the hospital, no trips to the ER or even any scary nights full of extra treatments for Drew. When we explain lock-down, the response is often that it must get very tedious for the children. However, that is really not the case. They know nothing else during the winter and perfectly happy most of the time.
This afternoon the guys–Ry, Drew and Jay–prepared to watch the Vikings in the playoffs by setting up a tent in front of the TV.
Even though the Vikes won, the boys lost eventually lost interest and took an unscheduled nap.
You saw it last week on American Idol: a 62 year-old general singing his original song called “Pants on the Ground.” Now watch Drew sing his version.
