Sunday, February 8, 2015: I know it's been a while, so here it goes. We had a great Christmas holiday, and I think the kids were thrilled. Keith received 2 tickets to see "Taylor Swift" this summer at the Nationals Stadium in DC. Sarah, received 2 ticket to see "One Direction" when they play at the Ravens Stadium in Baltimore, on her birthday, August 8th. Harry, can you give Sarah a "shout-out"? She loves you.
Keith has been having a tough time recovering from his tendon surgery in October. He ended up with a bad pressure sore from the braces, and had to take them off, and unfortunately haven't been able to get them back on. Then we were having major wheelchair issues, which have resulted in him missing school and opportunities to get out of the house. It seems to be working intermittently now, and will hopefully keep going until we can get it all fixed up, or can order a new one.
Keith has just had his annual check up with the MDA clinic and his team, and received some rather disappointing news. Expected, but still very difficult to hear. Keithy is such a great guy, who goes through so much. Without his positive spirit, and adorable dimples, I don't know how we could get through this. Please keep our family in your prayers, as we prepare for a future with more appointments, hospital admissions, and who knows what else.
By the way, our oldest son Jack not only received his driver's license last year, he is about to turn 21 years old next month . Watch out Bowie, and everyone else around the country!
Tuesday, October 28, 2014: My post tonight comes with mixed feelings of joy and warning. Congratulations to Jack on passing his driving test and getting his driver's license today! And to the world, I say watch out, "here he comes"......
Keith seems to be handling everything well, and dealing with the pain and discomfort. We see the surgeon next week for his post-op follow up, and are anxious for news about the full leg braces, and if he will need to keep them on all the time. They are quite large and awkward, and his knees are still fastened together, making it more difficult for him to move and get comfortable. The hips are also difficult to get used to, as Keith used to be very contracted and tight, and used to having his legs more spread out, and are now held together in a more straight position.
Thursday, October 23, 2014: Sorry for not posting sooner. It's been a rough week. Keith seems to be feeling better, and continues to take his pain medicines as needed. He has spent most of the time home, and in his bed but was able to get out of the house yesterday, and handled it well. He continues to wear his leg braces, which we affectionately refer to as his "Bionic Legs". We were thinking of dressing him up as a mummy for Halloween, but I think that he can now go as "Iron Man" (or some other super hero).
Thursday, October 16, 2014; 7:38 pm: Keith is home!!!! Yeah! He is comfortable and resting peacefully. Sorry, but I'm just too tired to elaborate right now. Hope to post again tomorrow.
Thursday, October 16, 2014; 11:28am: We made it to Thursday, and it looks like Keith is going home this afternoon. So far he is passing his goals for the day, and doing well. He was able to eat breakfast, and we are waiting for lunch to be the final test. He has also been transported from the bed to his wheelchair, and he is ready to go. As soon as he was safely comfortable in his chair, he started taking off his leads and trying to run people over, so he could get out of here. Not so fast Keith, we still have to try lunch, and make sure you can tolerate it and keep it down. So far he's been in his wheelchair for almost an hour, and seems to be relatively comfortable. Hopefully my next journal entry will be from home later today......
Wednesday, October 15, 2014; 11:19 am: It's been a rough morning for Keith. He has vomited several times, has been developed a slight fever (which has gone down, but still slightly elevated), continues to have a rapid heartrate, was sweating, and continues to be in pain. He's asleep now, and hopefully will stay that way, since it means he is comfortable for the moment. He will be staying in the hospital for tonight, in either the PICU, or an ortho room.
Wednesday, October 15, 2014; 4:47 am: It's been a long night. Keith is resting peacefully, but his heart rate seems to be staying up while he's sleeping. He is being monitored closely, and have labs drawn to see if there is another reason.
Tuesday, October 14, 2014; 5:55 pm: Keith is out of surgery, and on his way to the PICU for the night. I haven't seen him yet, but am trying to wait patiently for him to be brought to the unit. It sounds like the surgery was a success, and she was able to do quite a bit of lengthening of his tendons/muscles. He won't be completely straight, but should be much more comfortable than he has been. Of course, there is an option to go back in later to try lengthening some more, but that will be in the future when he is healed from this surgery.
Tuesday, October 14, 2014; 2:14 pm: Keith just went back to the OR at 2pm. Pray for our Keithy!
Monday, October 13, 2014: So here we are again. It's the night before Keith's surgery, and I've got to say, he is seems to be doing well. His surgery is scheduled for tomorrow at 1:30pm, and is allotted for 2-hours in the operating room. I can't wait to get this over with, and Keith can't wait to spend more quality time with his mom.
As for the weekend, we had a great time yesterday at Six Flags for Fright Fest! Shawn and Jack were working at the Lion's Den, so I took Keith and Sarah to Six Flags for the day. I didn't expect to stay long, but we ended up staying the entire day. We even stayed through "Fright Fest", but I've got to say that it is indeed quite scary for children. How often can you say that you were being chased by zombies (with dangerous equipment and weapons) through an amusement park at night! Keith was thrilled to see the "King BMX Stunt Bike Show", and meet the athletes afterwards. Great job! We also saw several other shows, including the magician, who was absolutely awesome, and went on several rides. Keith was so excited to ride the trains, after he noticed that they were wheelchair accessible! What a great way to spend the day!
On Saturday, I took Sarah to see the "One Direction" concert film at a theatre in Gaithersburg. She had a great time! We sat in the rain to see the concert in DC, and now we were able to sit in a nice theater and watch them up close on the big screen. She is a huge "1D" fan, and had a great time. Keith just wishes she would stop singing the songs, and driving him crazy. Now if Taylor Swift will come to town, we can take Keith to see her.
Wednesday, October 1, 2014:
We are home from the hospital! Keith seems to be doing well, and is resting. However, we need to make sure he keeps drinking, lots of fluids. He loves Gatorade, so we have several different bottles here for him, in different flavors. He has a follow-up with his pediatrician tomorrow, and I'm anxious to talk to her about these issues, and how to keep him healthy and hydrated, as well as preparing for the next surgery. He is now re-scheduled for October 14th to have his surgery, so it's going to be a busy 2 weeks.
Monday, September 29, 2014; 7:47pm:
Keith has been admitted to the hospital, and is resting peacefully. No word on tomorrow yet. He's had 3 bags of fluids and does look better than last night. Heart rate is still a bit fast.
Monday, September 29, 2014; 1:20pm:
We are back at Children's. Not sure if it's the bowel preparations or some bad food when he went out to party last night. He is dehydrated, and just finished his first bag of fluids. Will keep you posted when he talk to the docs.
Sunday, September 28, 2014:
What can I say. Here we go again, as we are preparing for another surgery for Keith. Everyone tells me that this surgery should be nothing like last year's spine surgery, but I can't help but worry about my baby. Sorry, Keith, you (and all my children) will always be my babies, no matter how old you are. I'm not sure if it's called "Tendon Release" or "Tendon Lengthening" surgery, but he will have his hips and knees (hamstrings) worked on this time, and probably do the ankles next year. Keith has been pretty contracted lately, and I know that this will help him feel more comfortable, and be able to stretch out more, so I'm trying to focus on the positive outcomes.
I will try to post updates here, or soon after, technology permitting. Please pray for Keith, as he prepares for another surgery. We love you, and will have some "Cherry Garcia" ice cream waiting for you when your feeling better, along with a new bottle of "Frank's Red Hot" to add to your meals!
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