- Took all three girls to the Father / Daughter lock-in at church. We stayed for a few hours, painted our faces, played the "random game", and just enjoyed being around family again. We had an awesome time.
- A dear friend gave us their father’s motorized wheelchair yesterday. This is going to help Maggie so much with getting around outside. What a HUGE blessing.
- Maggie went to church for the first time in 6 weeks today. It was so good for her to be around her friends and singing hymns.
- Maggie’s drug from Canada (clobazam) came in yesterday and we gave her the first dose yesterday morning, followed by another last night, and then again this morning. Since coming home from church this afternoon, she’s already showing signs of being allergic to it in a very bad way: itching, rash, splotchiness, etc. This allergic reaction is coming much quicker than her previous drug, Felbamate. We won’t be giving her another dose until talking further with the doctor tomorrow. According to her doctors, we have likely reached the end of the road with meds.
Maggie is continuing to improve each day since coming off of Felbamate, the seizure drug causing her so many breathing and rash problems. We are waiting for the new drug seizure drug to arrive (from Canada), and are hopeful it will help offset the sedating effects of her current medication.
She is still quite weak and needs a lot of help walking, but it does my heart good to see her improving. All of her therapies have started kicking in this week, so it has already been quite busy at home.
A friend recently asked me to describe what it has been like to walk the past six weeks. Let me paint a picture for you.
It is 3:13 in the morning and you’ve been driving all day through Kansas trying to make it to Colorado. The highway is dark and it is all you can do to keep your eyes open. Every so often you find yourself waking up to a loud “whrrrrr”, when you suddenly realize you are about to make friends with the corn field.
The only thing keeping you going is the image of the brown and white “Welcome to Colorful Colorado” sign at the state line. You keep reminding yourself ” If I can just make it that far, I’ll be home in no time!”.
Just as you are about to call Kansas home, the Colorado state line finally decides to show up, only to be greeted with a mile marker saying you’ve got 160 miles more to go to reach the exit. Feeling utterly dejected, sleep deprivation kicks in and you begin sobbing like a madman. You finally come to and begin doing the math – that’s 2.2 hours at 70 mph. If I bump it up to 75, I can make it in….
Every 15 minutes, you check the mileage, do the math, and see if you are picking up time. “Rats, I lost 5 minutes…need to pick up the pace….”
2.3 hours later, you finally make it to the exit for Colorado Springs. By this time, you’ve lost all sense of hand-eye coordination, taking the exit at 5 mph, your eyes peeled to the road and handling each curve with care. “I can do this” you repeat to yourself over and over….
You turn left off the exit, only to be greeted by another mile marker: 56 miles to Colorado Springs. You stare at the sign in unbelief. 56 miles through curvy roads with no street lights. 56 miles stuck behind a horse trailer going 20 miles per hour. 56 miles = 2 more Mountain Dews. 56 miles…..
It is during those 56 miles, though, that you finally begin to see daylight. Just enough daylight to navigate the road. Just enough daylight to cause a McDonalds to open ( can you say “caffeine”?) Just enough daylight to watch a beautiful Colorado morning sunrise while you meander rolling hills littered with cows and horses. Just enough daylight for you to see Grandpa put his arms around his grandson as they meander the hills, too.
Just enough daylight to bring you home where you finally find rest.
Things are quiet at home today.
Maggie is doing much better since getting off the Felbamate. The huge flare ups of the rash, itching, and breathing problems have gone away since removing that seizure med. She’s spending a lot of time in her room. Ashley Hosey has been spending a lot of quiet time with Maggie, too.
On Monday, we meet with some home health folks to get Maggie lined up with a walker and, possibly, a wheel chair. She’s having a lot of trouble maintaining her balance, needing help walking and going up / down the stairs in our home. In-home therapy starts in force next week, too.
By Friday, I hope to take the three girls to the annual Father-Daughter lock-in. We’ll only be able to be there for a few hours, but it will be good for our girls to be able to go and enjoy being around a bunch of other girls.
2 Corinthians 12:9-10 "But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong."
Maggie is enjoying being home, but is very weak and tired. She’s also fighting a bad rash that we believe is a side-effect from her seizure med. Unfortunately, she can’t take Benadryl for it, as it lowers the seizure threshold, so we are trying different over-the-counter meds like Claratin and Zyrtec. We are staying in contact with her doctors from St. Louis to monitor the rash and doing our best to keep it under control.
When you’ve been away from home for a while, what do you do after returning? You just "be"
You sip coffee from your favorite mug. You serve your kids home-made banana pudding for breakfast. You walk outside and breathe in the cool, fresh Colorado morning air. Your whole family gathers together on your bed and your children ask you to bless them.
We had an amazing homecoming, with wonderful friends welcoming Maggie home. I can’t put in to words what it meant to hug people who had been praying for Maggie, Kathi, and me. We’ve been spending the evening relaxing with the kids.
Here are some pictures taken by Tanner Silva.
The girls welcoming Maggie home: Sissy, Maggie B., Emily, Maggie K., and Ashley
Poppy, Sissy, and Maggie’s nurses from Memorial Hospital
Maggie’s Memorial Hospital Nursing staff, who have become great friends and truly love Maggie
Emily, Maggie K, Sissy, Tanner, and Jack
So, we are sitting at the St. Louis Airport enjoying a pastry and some coffee, about to board our plane. However, our trip home was almost not to be….
We spent all of last night and most of the early morning in the Children’s Hospital emergency room due to a bladder issue Maggie was having, from a complication with her surgery earlier that day. She was about 30 minutes away from getting readmitted to the hospital when she finally urinated for the first time all day. Had she not urinated at that time, they were going to readmit Maggie to the hospital and likely not be released for a couple more days. You could have cut the air in that emergency room with a knife.
We finally got back to the hotel room about 3:30 am, finished packing, hit the pillow at 4:00 am, and were woke up to a fire alarm in the hotel at 6:00 am ordering everyone out of the hotel. Of course, it ended up being a false alarm.
Kathi and I looked at each other, called for cab, and made a bee-line for the airport. We are now sitting at gate A21, pumping caffeine into our veins, and looking at each other with blank stares.
Come Lord Jesus……