Day by Day......

Phew. I will be glad when this week is over--so I say now......

Monday began with a trip to Burlington, IA. Brock was fitted by his Orthotist for new DAFOs. I kept the same design for the braces, but did order the B-man some cool black and red Keeping Pace shoes. Sadly, the braces won't be ready for another 4 weeks. That means he will be in casts and won't be able to even use them right away. The day was fine other than Brock having a seizure that afternoon! Monday broke a 2 week stretch of seizure free days. :(

Tuesday we drove to Peoria where Brock saw his Neurologist. We had a lengthy visit and discussed some options for Brock and all his breakthrough seizures---he had yet another Tuesday morning.

There is a special diet, the Ketogenic Diet, that has proven to give patients some relief from seizures. The simplest way for me to describe it is like a modified Atkin's Diet with high protein/fat and low carb. Since Brock is tube-fed, there is a formula called Keto-cal that should provide all his nutrition. The downside is that Brock has to be inpatient for over a week as they begin the diet and monitor him. Our Neurologist/Children's hospital doesn't offer such a program and the nearest is in Saint Louis. No offense, I love my STL Cardinals, but I can't see how an extended hospital stay and regular visits 4 hours south is feasible with our schedules. Additionally, there would be regular tests and bloodwork---something Brock's veins are NOT fond of.....

The other option sounds a little Sci-Fi, but has me very intrigued. VNS--Vagus Nerve Stimulus is an option for Brock. I have yet to read through the brochure and watch the informational video, but it sounds amazing. Apparently, a neurosurgeon implants a device in Brock's chest and then weaves a wire up around his left vagus nerve. The device sends impulses up the nerve, thereby decreasing the number of seizures and/or the intensity of them. It is not a quick fix, but over time should help Brock with his seizures and ideally have him come off some of his meds that are causing such terrible side effects. I envisioned brain surgery, but found out it isn't that complicated and is even OUTPATIENT!?!?!? All that is a lot to process, especially now with Brock's upcoming hip surgery.

Moving on to Wednesday....another appointment.............This time, the orthopedic surgeon that did Brock's foot surgery and will perform the hip procedure on Tuesday. Things went ok, considering all the waiting! Dr. thinks I need to stretch Brock's feet more, something I wish I would have been told to do!!!!!!!!!! With each diaper change, I had been stretching just enough to make the feet barely beyond straight. However, in the exam room the Dr. cranked B's feet WAY out and made him wail. Oh my goodness the poor boy! There should be plenty of stretching during the 4 weeks of casts that will extend to the feet and have them turned outward. Then, after all that ordeal we will have the DAFOs to brace him.

Wednesday is also the day that Brock had TWO seizures, bringing his count to 4 in 3 days?!?!?!? Ugh. I hate seizures.

I have a strange theory that could have contributed to this string of breakthroughs..... Last week, Miss Avery was to blame for our refrigerator being left open all night. When we awoke, I found the contents of my fridge to be almost warm! (There are 2 light bulbs that stay on and can add a lot of heat!) Anyway, Brock's Topamax was in the fridge.......it crossed my mind that it could have been compromised, but didn't think much of it until all these seizures started. So, Wednesday evening, my trio and I drove to get a new prescription of Topamax. While in the drive-thru of Walgreens, I was informed that it would take 2.5 hours to have the script filled!!! I just about had a fit because that would make it after 8:30 pm and Brock takes his meds at 8:00. Just as I was giving my rant to the pharmacy tech, I see out of the corner of my eye that Brock is seizing! Nice. That made #2 for the day and #4 for the week---

After that, we ended up killing some time getting the kids a Happy Meal, and toy 'dreaming' in the aisles of K-mart. I was just pacing and on pins and needles wondering how I could get Brock his script any faster. At 7:45, we packed up and planned on stalking the pharmacy until the Topamax was done. (In Walgreens defense, they do have to compound the med, but 2.5 hrs is just insane!) The drive-thru was busy and they made me make a couple laps around the store, but eventually got the med and pulled over and gave Brock a dose right at 8pm.

Brock had a good night and has had a very good day today! Meanwhile, I looked into another pharmacy over in Peoria that specializes in compounding. They tell me I can get a compound of Topamax made up and it will have a shelf-life of 35-40 days versus the 14 days Walgreens was doing!!!!!!!!!! Walgreens even confessed what they were doing "wasn't as accurate as other specialty pharmacies." Gee, that made me feel great.

Thursday is almost over and I am happy to say it has been much less dramatic than the 3 previous days. My mom even came over this afternoon to watch the trio for a couple hours so I could mow our yard. (Jason has been out of town all week for meetings and the yard appreciated its over-due haircut!)

Nothing is planned for Friday thus far so I am hopeful for a stress free day tomorrow--fingers crossed!

My kiddos are all registered for Kindergarten and summer is wrapping up with the calendar turning to August in just a few short days. It seems the older I get, the faster the time passes.....

Until next time....