Appt In Denver Set

On Thursday, we meet with a neurology doctor at Children’s Hospital in Denver. This is the first of several appointments to get outside opinions on what can be done next.

Rough Night, Better Today

Last night was a repeat of Thursday night; but so far, Maggie is having a much better controlled day. We went to the church to browse through a huge garage sale and then went to lunch at Chili’s. The kids are chilling out watching the Cosby Show.

Gonna try and keep it quiet for the night.

So far, emails with case history information have gone out to three different doctors / hospitals. We have two more to contact and then we’ll see what begins to come of those contacts.

No Seizure Control At This Point

Maggie had another hour long seizure last night, woke up several times in the night shaking, and woke up this morning shaking. We are trying to break this cycle with some regular doses of Ativan. Maggie’s doctors want to do everything possible to keep her out of the hospital.

Gonna be a long weekend.

Maggie’s doctor in St. Louis has told us to begin the process of getting other opinions, as there is not much left to do. We are beginning that process asap.

Can’t Think of a Title….

Maggie’s rash, itching, and swallowing problems are continuing on, even though she is off the meds. It hit harder last night, in addition to having an hour-long seizure. The VNS didn’t stop the seizure.

Today, Maggie is getting the amperage, on the VNS, turned up a knotch.

She’s continuing to have struggles with walking. Last night’s seizure didn’t much in that regard.

How Do You Do It?

Over the last five years, one of the most frequent questions I get asked is "How do you and Kathi do it?"

It is absolutely nothing but God’s Grace. I know that sounds all flowery and "christianese", but it is the truth.

• It is God’s Grace and Favor that He withheld from us and Maggie how difficult a road this would be
• It is God’s Grace that He is still withholding from us what things will be like six months from now
• It is God’s Grace that He provides us a little bit of light at a time. It could be nothing but darkness
• It is God’s Grace that He brought Maggie to Himself at an early age.
• It is God’s Grace that Maggie is not suffering more than what she is
• It is God’s Grace that He has provided a people to carry Maggie and our family in prayer, while His plan is flawlessly being played out.
• It is God’s Grace that He chose Maggie for this.
• It is God’s Grace that He uses His church body to love and provide for us. He doesn’t have to.
• It is God’s Grace that He is using this to grow Kathi and I closer to each other rather than further apart. Believe me, this is not the norm.
• It is God’s Grace that He is being faithful to grow Dax in to a man that seeks to walk in Holiness rather than bitterness
• It is God’s Grace that Anna Kathryn and Zoe exude Joy and Beauty
• It is God’s Grace that Maggie has doctors who love her and refuse to give up on her
• It is God’s Grace that we even have Hope
• It is God’s Grace that Maggie has continued to worship Him in humility, peace, and contentment. The more she suffers, the more she longs for Him. That is nothing but Grace.

As I was reminded by a dear, dear friend this morning from Scripture: "our God is in the heavens, and He does whatever He pleases ( Psalm 115:3) ". My prayer is that He will continue to find pleasure in us and that He will find us all faithful and clinging only to Him. My second prayer is that it will please Him to quickly bring an end to this suffering that Maggie has to endure.

Another Day, Another Visit To The ER

Friends:

So, this weekend brought a great time at the Father / Daughter lock-in, a motorized wheelchair for Maggie, church, and a visit to the ER. The weekend would not be complete without paying a visit to our most favorite place in the world.

Maggie’s last available drug, Clobazam, arrived and we began giving it to her on Saturday. By Sunday morning, Maggie was itching pretty bad, but it came and went in spurts. Her allergic reaction to Clobazam got much worse through the afternoon, to the extent that two doctors ( Maggie’s on-call pediatrician and Dr. Golden) urged us to get Maggie to the ER. Her airway was tightening and she was having trouble breathing.

I got the call from Kathi just as we were wrapping up a special prayer time at the church for Maggie, and beginning to pray for Michelle Deconnick and Bethany Palmer. Unfortunately, I left too quickly to let everyone know exactly what was going on.

We got in really quickly, and the ER treated Maggie with a dose of steroids. They monitored her for several hours, and then, thankfully, discharged her.

We’ll be giving her steroids and benadryl over the next three to four days to continue to help with the rash and knock out the allergic reaction.

Right now, Maggie is only on one anti-seizure drug and the vagus nerve stimulator. It is very important that these are 100% effective at keeping Maggie seizure free and out of the hospital.

We’ll see where we go from here.

Catching Up

• 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.

Improving Every Day

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.

Stuck On a Highway In Kansas

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.

Quiet Time At Home

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.