Tuesday, August 31, 2010

Stampede Success

The Stampede for VIPS 5K was a big success all around this weekend. I completed my first 5K run, Collin walked the course with Kyle, and Cousin Ila even got to walk the final lap with her mom. It was a little on the hot side and there was almost no shade on the course, but it was fun to run on the track at Churchill Downs and the volunteers were very friendly and encouraging all along the way. Best of all, Collin raised 112% of his fundraising goal! A huge thank you to all who so generously helped us raise money for Collin's school! He'll be sending out thank you notes soon. ;-)

An interesting part of the race was that they supplied a Krispy Kreme donut cart where you could build your own donut after finishing the race. The very thought made me a little pukey and the ketogenic diet (and mama) won't allow donuts for Collin, but he did get something just as good.

Monday, August 30, 2010

Quote From Collin's Cardiologist

"The bad news is for me today. Collin won't be coming back anymore. All of the holes have closed and his heart is completely normal."

Whooopeeeeeeee! One less doctor!

The only bad things that happened during the appointment was that I saw that his 2 year molars have started coming in on the bottom. WHAT?! We're still battling the premolars! This kid is a teething overachiever.

Friday, August 27, 2010

Say What?!

We've had a busy couple of days here, folks. The next time you see me starting to plan a week like this one, somebody please shake me. I am so serious.

So, yesterday morning was Collin's sleep-deprived EEG and neurology appointment. It had been 6 months since our last EEG - a major record - and the first EEG since starting the ketogenic diet. I was nervous, I'll be honest. Even when things are going well, I have this lurking fear that I'm going to show up to a test or appointment and they will say, 'Surprise! You're imagining things! Something really bad is going on that you couldn't even see."

Anyway. With an EEG appointment of 8:30am, that means a wake-up time of something way, way earlier than that and then hours of making sure Collin doesn't fall asleep. By the time we got there, the poor guy was so hungry and tired that he was half crying, half moaning in the waiting room. He performed beautifully, though, falling asleep on cue, waking up on command (with a smile, no less) and not thrashing in his sleep too much. I had vowed that I was going to sleep in the chair with him and not look at the computer screen, but it didn't work out that way. It was more like my eyes never left the screen, much less closed. My friend Cristina takes a picture of most of her son's EEG screens, and I kind of wish I had. I knew I was seeing something, but I just wasn't sure what.

Our actual neurology appointment wasn't for another 3 hours, but Dr. Awesome was kind enough to work us in right away. (As the lovely EEG tech said before she asked on our behalf, "I don't think Dr. Awesome would want to keep Collin waiting.") When he walked in the room, I scanned his face for clues, knowing he had just come from reading the EEG. He kind of pursed his lips. He looked at the ceiling. He rocked on his heels a little. No smiles. Definitely no excitement.

"Ah. Well. Collin's EEG showed no epileptic activity today. I saw some mild slowing in the background, but aside from that, I detected no discharges or any other signs of seizure activity."

?!?!?!?!

?!?!?!?!?!?!?!?!?!?!?!?!

"So. Ah. If I were reading this EEG and did not know Collin's history, I would say that it was an otherwise normal EEG with some nonspecific slowing in the background."

I think I might have opened my mouth.

"Of course, there is always the chance that if we were to run a 24-hour EEG we would see some sporadic discharges, but this is really of no significance."

I don't know why I feel the need to not appear stupid and happy when I hear news like this. That's ridiculous. Instead of smooching somebody, I choked it down and moved on to my list of questions.

SIDE NOTE: One of my questions involved whether he agrees with Collin's geneticist that we are likely not dealing with a degenerative disorder. He hemmed and hawed and drew a few charts and basically said that we can't know. Which, of course, I knew. But I was replaying the conversation with Kyle later and suddenly found myself getting riled up. I wasn't upset AT Dr. Awesome, but FOR him. Science was keeping him from using his experience and intuition to answer a simple question of opinion. In addition, Dr. Awesome had used the absence of reliable studies to discount the potential efficacy of a few therapies/treatments I asked about. Not that I am particularly married to any of these treatments, but it just suddenly rubbed me the wrong way that we have to wait for people to find the money to do 'reputable' studies in order for something to be considered useful or true. Without a study to cite, we can't recommend or even consider some options without being labeled 'alternative'. This lead me to conclude (without having even formed a hypothesis) that too much science can be detrimental to an otherwise reasonable brain and paralyze the ability to form sensible opinions or sometimes even make an educated guess. I probably don't even really believe half of this, but the conversation earned me my new favorite nickname from Kyle: Enemy of Science.

Dr. Awesome is very dear to us, and his caution in making premature judgments has allowed us to hold on to hope more than once. But I had to smile when he wrapped up our appointment by saying, "So. Ah. It appears that we are making some steps in the right direction with Collin's seizure control (TWO PLUS MONTHS SEIZURE FREE AND MED FREE) and development (SMILING, LAUGHING, COMMUNICATING, INTENTIONAL MOVEMENT, DEVELOPING PREFERENCES, USING HIS EYES). Now we will continue to watch and see what happens." What did I tell you? Science brain.

Tuesday, August 24, 2010

Hooray

And when I say 'hooray', I don't mean 'whoopee!' I mean "WOOOOOOHOOOOOOOOOOOOOOOOOO!!!!!!!!!!!!!!!!!!'

We found out on Friday that, after literally months and months of struggle and discouragement and researching and nailbiting, we FINALLY got the official approval for Collin's Michelle P waiver. This means that instead of the traditional Medicaid waiver he had been receiving which is more of a medical waiver and only provided us with limited respite support, he now has a waiver designed specifically for individuals with developmental disabilities. So, we will now receive money from Medicaid intended to get Collin the help he needs.

Which means that we will be able to hire someone (or multiple someones) to come into our home and help me with Collin's therapies and care.

Which means that Collin will get even more one-on-one time than he does now.

And that I will be able to cook dinner sometimes and make Collin's numerous phone calls and think critically about therapies and equipment instead of just getting by. I'll be able to do what I do with more efficiency and creativity and energy because I'll actually have two minutes to rub together.

So, that was a pretty good kickoff to our Just Us Weekend. We celebrated with lots of rest, long walks, ice cream cones, and a trip to the art museum.

I think we're going to make it to vacation.

Friday, August 20, 2010

Catch Up

Someone somewhat politely brought to my attention recently that there has been a picture drought on this blog of late. Let me try to remedy the problem with this pictorial summary of a few things Collin has been up to.

Collin's school group is taking a break in August, but the last time he went, it was bug day. He had a good time feeling the bugs, reading bug books, and going to his very first music class, which almost made him completely lose it with happiness.

Collin has been working hard on head and trunk control this summer. His hard work in the pool and at home are paying off in the form of brief periods of *very* supported sitting.







A favorite new pastime is hanging out with little cuz Ila. They like to feel each other's face and have pooting contests. At this point, Ila has a winning record.


One of the biggest things we've been working on is eating. Collin still gets vital stim therapy twice a week and we will soon be working with an additional speech therapist to hopefully kick his progress into high gear. He accepts food fine, but doesn't do much with it once it gets in his mouth. Here, Collin is enjoying blueberries for the first time. Who knew you could have delicious fruit on the ketogenic diet?!

And here's the grand finale. Listen closely for the snorting.

Laugh it Up from Annie Kratzsch on Vimeo.

Thursday, August 12, 2010

Burnout

We've got it bad around here.

I've been noticing this weariness for the past few weeks and I just couldn't shake it with the random nap or trip to Target by myself. Every therapy, every appointment, every obligation, no matter how productive or enjoyable, just felt like too much. Even on days when not much was going on, we were feeling the stress of the every-day and anything extra or unexpected (like Collin's poop-of-all-poops last night that required dismantling his high chair and throwing away a perfectly good set of mardis gras beads) sent us careening into stress-out land. Even Collin, though he is still cooperative with his therapies and making slow but steady progress, seems a little lackluster, almost like he's bored.

And when I thought about it more, I realized that none of us have really had any kind of a true break in recent memory. Like, since Collin was born. We took one week off from therapies last year, but that's it.

We have a much-awaited vacation coming up the week of Labor Day, but that's weeks away. So, we had a family meeting Monday night at dinner and came up with a plan of survival so we can make it to our week of rejuvenation. The basic tenets are as follows:

1. Minimal cooking, which leads to
2. Minimal cleaning
3. Minimal therapies - this is a hard one, because it's so much a part of what Collin does every day, but we narrowed it down to his NACD program and regular time in the pool
4. Minimal commitments - we backed off on a couple of things, even though we really like them, and declared one "Just Us Weekend" between now and vacation.
5. More exercise (or at least the same amount) - for us, one surefire way to avoid a mounting stress storm is to do some yoga or take a run, so we're making room to do that as much as we can/want.

SIDE NOTE: Speaking of running - Collin is doing a great job on his goal for the Stampede for VIPS 5K in a few weeks. I felt bad that I hadn't raised any money yet, but he told me not to worry about it and that he would take care of the fundraising so I could focus on running without injuring anything else. And I said 'ha ha'. And he said 'lighten up'.

ANYWAY. I feel like we've seen positive results already. Collin is taking great naps during the day, which is a nice change, and has really enjoyed getting back in the water more often. I'm feeling less frazzled and we're all benefiting from more downtime together. There's no better medicine.

Friday, August 6, 2010

Try, Try Again

Well, I've had ultrasound treatments, chiropractic adjustments and physical therapy and I'm finally running again after The Sprain That Ate My Foot. And so, Kyle, my sister and I will be participating in another 5K in a few weeks! (Do you like how I said 'another' like I actually ran in the first one?)

The annual Stampede for VIPS is a huge event to benefit Collin's school - remember? the one where he did his first craft? where he went to his first ever picnic right after being diagnosed with Infantile Spasms last year? where he peed his pants from excitement in his first music class? It is private and non-profit, which means they need to come up with their own money and this event is one of the heavy-hitters in that department. The 5K is just one of the many fun things that will be going on at Churchill Downs Saturday, August 28th, so come on down if you don't have anything planned.

It's true that visual impairment is only one small aspect of Collin's challenges, but VIPS provides a place where he is totally accepted and encouraged to try things he might never do otherwise, so we are happy and proud to support them in this way. And YOU can even go to Collin's personal Stampede page and join us in supporting one of our very favorite places!

Monday, August 2, 2010

The Croup

I failed to mention that our primary phlebotomist last Monday was sniffing and hacking and coughing and I heard her tell someone on the phone that she was sick but had come into work anyway since everyone else had called in. When we went back to the room, I told her that I had heard her say she was sick and asked that she put a mask on since Collin has low tone and seizures. She assured me that it was just allergies. (Side note: People make me crazy with swearing that every symptom they have is from allergies, no matter what time of year it is. It's some kind of virus denial. Fess up! You're sick!) I said that I was glad to hear that but that if there was ANY chance that it was more than allergies, I wanted a mask on her or Collin or both. She waved off my concern (literally) and started prepping Collin's arm, breathing all over both of us. Maybe I should have pushed it further. In the moment though, I guess I wanted to believe her since she had already coughed on us anyway.

Fast forward to Wednesday, when Collin started getting grouchy and needing to be suctioned in the mornings. Thursday, he started drooling like one of those fountains that punk kids put dish soap in, so I assumed we were dealing with teething. I wasn't feeling great either, but sometimes that just happens when you get exhausted enough. Then 3:00 Friday morning, Kyle and I found ourselves leaping out of bed and running to Collin's room while he coughed and choked on all of the snot and phlegm that had somehow appeared overnight. His fever was very low, but we could tell he didn't feel well, so I took him to the pediatrician the next morning.

The pediatrician concluded that it was a virus of some kind, prescribed Tylenol for irritability, increased fluids to help him heal faster and said to call if anything got worse. By early afternoon, Collin's breathing was sounding hoarse and his cough sounded like a bark and made him retch. I called back and got our diagnosis: croup.

Now, in my mind croup was a throwback to the old days when illnesses were serious enough to have a THE in front of them. It wasn't 'plague', it was 'THE plague'. You didn't get 'croup', you got 'THE croup'. And, according to Anne of Green Gables, the croup requires sending to the next town for the doctor, drinking a bottle of ipecac, and yacking your guts out. Apparently, though, you don't even 'catch' THE croup. It's just a condition that develops in some cases when you have come down with a virus. Your airway gets inflamed, which causes the forced, hoarse breathing and barking cough. The pediatrician put Collin on a short regimen of steroids to help with the inflammation and he was sounding better by that evening. After a weekend of good rest, lots of water, and medicine, our boy is almost as good as new.

Two good things came out of this episode:
1. Collin did not have any seizures throughout the whole ordeal. He was still cutting his premolars, had a fever and a cough and still didn't seize. That's got to be a good sign for the long term.

2. He cried and cried when he felt his worst on Friday. Every time, he woke up from one of his many naps, he cried. When the pediatrician cleaned out his ears to see if he had an ear infection, he screamed his head off until there were snot and tears running down his face. It took a long time to calm him down. It was great.

To follow up on the phlegmy phlebotomist: I called Friday after I realized Collin really was sick and spoke to the lab supervisor, who was extremely helpful and friendly and gave me her direct line, asking me to call and give her an account of my next visit to their lab. You KNOW I'll be using that phone number.