Thursday, October 29, 2009

Growing Boy

I can't remember if I mentioned this, but Collin grew almost three quarters of an inch in the past two weeks. The nutritionist didn't believe it at first and we had to remeasure him, but it was true. This is super exciting considering he didn't grow at all for two months while on prednisone. The down side is that we grow while we sleep, so he is spending his free time plummeting into ridiculously deep sleeps for most of the afternoon and evening (which is only partially due to the Clonazepam he takes at 2:00). I literally CAN NOT wake him up from these naps. When I was ready for him to eat this afternoon, I was banging a spoon on a dish, pressing a vibrating therapy toy on his cheek, and doing an impromptu cheer, but he just sighed and the food fell off of his lip. There aren't many people quite as skilled as Collin at ignoring me, and he's only eight months old.

Wednesday, October 28, 2009

Sabril: Week 3 - OR - Chicken a la Collin

Tuesday was a big enough day that it took today to recover enough that I could write about it. Nothing is wrong! (That's what I have to say immediately every time I call my family at an undesignated time now. Simultaneously sad and funny.) It was just wild in a way-too-many-things-for-one-day kind of way.

First, we went to see Dr. Awesome for our neurology checkup. It was a great appointment, per usual. He spent tons of time with us answering each and every one of the questions on our extensive (and TYPED) list and, though we talked about some tough things (which is sort of the nature of the beast at the neurologist's office), we felt encouraged overall. We have decided to start weaning the Clonazepam, which is very exciting. This is an antiepileptic and sedating drug that Collin has been on since July. It was meant as a backup for his other drugs and to provide some 'wiggle room' during drug transitions; but, now that Sabril is working so well, it's no longer needed. (High five to Sabril.) It will be a slow wean - 6 weeks at least - because it is a habit forming drug, but we're just happy to be on our way. Also because Sabril is working so well (side hug to Sabril), Collin hasn't had a seizure that we've seen in over 3 weeks. Consequently, Dr. Awesome ordered an EEG to see if Collin's brainwaves are starting to normalize yet (stopping the seizures is only half of the goal). So, after our appointment, Collin and I walked over to Children's Hospital, worked our way through the familiar and lengthy Outpatient Registration process, and headed to NeuroDiagnostics to get the test run. While we were waiting, Collin pooped in the chair, which has apparently become a favorite hobby of his. When we finally got all settled in to the clean armchair, with Collin all snuggled up in my arms and my feet propped up and the room so cozy and dark, he and I both fell dead asleep and enjoyed a blissful nap for the duration of the EEG. I joked with the technician that I wouldn't object to an EEG everyday at 3:00. We should get the results tomorrow.

We made it home from the hospital about half an hour before all of Collin's therapists and service coordinator were scheduled to show up for our big six-month plan meeting. When you are in an Early Intervention program (a state-sponsored program that provides help to children under the age of three with developmental delays - what an uncharacteristically brilliant use of taxpayer money!), you set goals for a six-month period of time and when that 'plan' is over, you meet up again to reevaluate the progress that has been made and set your goals for the next six months. It was interesting thinking about our first meeting, when we thought that Collin's only challenge was his difficulty eating without aspirating. We only had a speech therapist to help with the feeding and a family therapist to help us deal with the stress and struggle of our situation; our goals basically covered getting Collin off the g-tube and started breastfeeding. So much has happened since then. With the Infantile Spasms diagnosis, we've had to let go of some goals and dreams and we've struggled constantly against the negative side effects of medicines (cheek smooch to Sabril for not presenting any yet). It could have been a really tough meeting. But I sat there with these six incredible women (we've added a therapist or two since the beginning!) who all love Collin so much and listened to them sharing stories with each other about their sessions with him and how excited they are about little things he's doing and I just glowed inside. When I started my own therapy back in April, my killer therapist shared with me her own experiences in the Early Intervention program with her son and expressed the way in which the therapists provide not just strategies, but also support and empowerment. I had no clue what she was talking about at the time, but as we sat around the table drinking tea and laughing and dreaming about what Collin could be doing in six months, it really hit home.

After the meeting, I woke Collin up from his nap to feed him his midday meal. We are currently feeding him pureed meat twice a day to boost his protein intake and have been having a little trouble pushing it through the tube no matter how much we dilute it or how hard we push. I mixed some almost-liquified chicken in with his breastmilk and was talking to him sweetly while I pushed firmly on the feeding syringe. Apparently, the syringe was not seated in the extension tube well enough to withstand my brute strength, because the tube exploded from the end of the syringe and pureed chicken and breastmilk came rocketing out. I mean, think fire hose. Of chunky, funky milk. It sprayed mostly on the side of Collin's face, but it hit with such force that it ricocheted everywhere and splattered half of the couch, all of Collin's Boppy, every inch of his body, all of my clothes and my hair and face. I had pushed most of the syringe out before I even knew what had happened. Collin looked at me through the one lens of his glasses that wasn't totally covered with smelly, sticky chickenmilk and I could swear he rolled his eyes. I gave him a stern talk about respecting his mother and then we went upstairs to strip down, scrape off the quickly cementing chickencrud, and take an afternoon bath.

Luckily, we ended the day with a leisurely dinner with dear friends and time to decompress with the help of good food, good listeners, and some great laughs - a surefire combination. Now we're looking forward to a few days of calm. Fingers crossed.

Monday, October 26, 2009

Exile

On Sunday evenings, my sister stays with Collin so that Kyle and I can go to church. We sit in the very back to avoid germs and leave during communion for the same reason and to get home for Collin's lengthy bedtime routine, but it's good for us to go. Yesterday, we studied Jeremiah 29 - a letter from a prophet to the people of God after they had been defeated in battle and taken from their homes to live in enemy territory. The message was about how God told them how to live their lives while they were in exile: settle down, build a life, make a difference with the little things. The speaker applied this to our presence as a church in our city, but I found myself thinking about how it is also appropriate in a more figurative sense to parents like me and Kyle. We're in exile - somewhere we do not want to be and feel like we don't belong. We long for the 'home' that we had before our lives turned upside down and it's tempting to put life on hold and get used to living in survival mode. But a major way God redeems our situation is through the same means he did for the Israelites - we settle down here in this 'land' of confusion and struggle and weariness and start to build a new life. We use the beauty and power of the 'little' graces of everyday life to make a difference in our own family and, consequently, in those who surround us. So, we find the things we can do in our situation and we claim them and enjoy them - we take fall walks in the park and watch Halloween cartoons at home and grab moments to read and crochet and cook and write to friends. And what happens is that, while we're clinging to God's promises to make everything right one day and lead us home, we take his advice and start putting down little roots and the unthinkable happens: we find joy and healing in the very place that threw it all into question. Now that's redemption.

Saturday, October 24, 2009

Experts in the Field

Collin started retching again a few days ago and, though we assumed it had to do with the med transition, it had not improved as the days went by. Today, we found some yellowish liquid in his mouth after a retch, making us think that all of his heaving is stressing his Nissen wrap and causing it to start to 'slip' (the term for when the loop they made with the stomach muscle around the bottom of the esophagus starts to come loose). Luckily, Collin knows how to protect his airway now, so it's no longer a safety issue, but we would still rather the Nissen loosen from a natural progression of his growth rather than from the stress of trying to throw up, so we got serious about trying to figure out what was upsetting his stomach so much.

We had already been experimenting with the flow rate of his feeds for several days and venting his tummy before and after eating (we hook an extension with an empty syringe to his g-tube button to let air or excess fluid out), but nothing seemed to make a difference. He was retching up to an hour after eating and nothing really came into the syringe, so it wasn't because of being over full or gassy. Kyle mentioned that maybe it was the Sabril, but I had a feeling that that wasn't the case because he seemed to have done so well with it overall and when Topamax upset his tummy, it was different than this in some way that I can't explain other than to say that my Momma-Spidey-Sense can make the distinction. I just felt like the recent retching had something to do with his digestion. We thought through everything he has eaten (which isn't much, since we still haven't really had a chance to put him back on solids since his fever last week), his supplements, and nothing made sense.

It had been in the back of my mind that coming off of the Zantac so fast could have caused some trouble for him. After blocking stomach acid for so long, it seems like that could be tough on a little tummy. And when I spoke to the pharmacist about taking Zantac for my hives last week, he mentioned that the only thing I would have to worry about was a possible upset stomach. We always ask the doctors about how to 'go on' and 'come off' a drug, and most of the time they wave off our question with an assurance that it would make no difference. But we've had too many experiences with meds, vitamins, and even tiny amounts of formula causing a shock to Collin's system. I still think it was a dose of Poly-Vi-Sol that sent us to the hospital the second time. So, I talked to Kyle and did some reading today and, sure enough, I found some evidence that coming off Zantac too fast after a long course of it can cause rebound symptoms. We put together a weaning schedule right away, gave him a dose with some Pedialyte to give him extra fluids to dilute his stomach acids, and he hasn't retched since.

My mom always contends that there should be some kind of honorary medical title for parents with situations like ours, and I have to say that when I realized we had figured it out today, I felt like Doctors Kratzsch and Kratzsch, world renown experts in Collinology.

Collin wasn't quite as excited as we were and slept all the way through our celebratory walk and viewing of It's the Great Pumpkin Charlie Brown. Either he was enjoying his lack of killer heartburn or is launching into a colossal growth spurt after two months of not growing on prednisone. Maybe next week he will look less like the great pumpkin himself.

Friday, October 23, 2009

Halloween Costume #2


With this Harry Potter, Lord Voldemort would die from cuteness overload.

Thursday, October 22, 2009

Halloween Kick-Off

Commentary from Annie Kratzsch on Vimeo.

Here, Collin shares his thoughts on his first trick-or-treating experience. He wouldn't share any of that candy with me even though he's not allowed to eat it. He said if he can't have it, no one can.

Wednesday, October 21, 2009

Sabril: Week 2 -OR- The Kratzsch Infirmary

Well, between Collin's first fever, my first bout of hives, the return of Collin's retching, and me having to baby my stitches from last week's surgery, it was quite a week. I'd be lying if I said it wasn't hard and discouraging. Besides feeling bad, we had to cut way back on Collin's daily therapies, which is nice in that it gives me a break, but tough because it feels important to do those things and consequently feels like a setback when we don't.

Today was the first day this week that Collin felt good AND I wasn't losing my mind from itching so we celebrated by playing and snuggling most of the day. In the evening, our good friends the Popps came in town and we took our boys for their first Trick-or-Treating experience at the Louisville Zoo. Interestingly, Collin's favorite part of the whole experience was the area that had a disco ball and blaring Bee Gees music.

And also - you have to come close, so I can whisper this part - no seizures this week.

Tuesday, October 20, 2009

New Normal

There's nothing like going straight from your baby's first fever to a mysterious case of torturous hives to make you appreciate the relative calm of your 'normal' life. After another night of next to no sleep due to an impressive array of nasty symptoms, I went to CVS at 6:00 this morning for a last ditch attempt at relief. Sometime in the wee hours of the night, I remembered something my doctor had mentioned about using Zantac along with Benadryl to treat hives and researched it. I was willing to try anything and I'm glad I did, because I started feeling relief almost immediately and slept for three hours.

It's amazing how different the world seemed when I woke up semi-rested and nearly hive free. I realized how much I had missed my normal routine with Collin these past few days of misery. I had hardly touched him at all and hadn't participated in many of his therapies or med preparations. It felt so sweet to sit and talk to him during his tube feed and help him with some physical and vision therapy before his nap. It's kind of strange to find comfort in drawing up medicines.

Unfortunately, the calm didn't last long and Collin started retching at his 6:00 pm feeding. It happened again at the 10:00 and we have no idea what could be causing it. With all of the medicine changes and virus symptoms, who knows. So we just slowed the rate down on his feeding pump in the hope that things will work themselves out.

Sunday, October 18, 2009

You Have Got to Be Kidding Me

So, I was thinking this morning. I thought to myself, 'Self, I don't think we have quite enough going on right now. I don't think our life has reached quite the point of craziness that I would like to see. What should we do about that?' Well, I tapped my foot and a stroked my chin and then held up my crooked little finger and cried, 'I've got it! Hives! Huge, gross, scary-looking hives! Hives all over my body! Hives with no discernible cause! Hives that don't respond to antihistamines! That's the ticket!' 'Self,' I replied with a smile, 'you're a genius.'

Then I felt a little itch on my wrist. There were little bumps like tiny little mosquito bites. The itching steadily got worse and started to throb and in the time it took me to say, "Kyle! Look at these cute little hives!" my whole forearm was a giant hive. In an hour, it started to disappear and I thought the fun was over, but it soon reappeared on my upper arm - and stomach and back and legs and face. (Kyle gave me a sad look when they got up my neck to my cheek. 'It looks like California on your face,' he said.)

Luckily, it's Sunday and Kyle is home to take care of Collin, because I've spent the whole day trying not to completely lose my mind from the itching by slathering various creams, using cold compresses, and taking oatmeal baths (except that I can't put my left arm in the bath because I still have stitches from the SURGERY I JUST HAD LAST WEEK). I have NO idea what I'm reacting to, as I haven't used or eaten anything different recently. Hopefully, it works itself out in short order, because we have a week full of therapies and appointments ahead of us and I don't get time off for hives.

Saturday, October 17, 2009

Not Flu

According to the pediatrician, Collin has a flu-like virus that is not the flu. This case of Not Flu caused his temperature to spike up near 104 again last night, but we were able to get it down to normal by the middle of the night and it's been there ever since. He's a little out of sorts and still isn't opening his eyes, but seems okay other than that. We'll keep giving him extra fluids and keep tylenol in his system for another 24 hours and then see where we stand. If the fever isn't gone by Monday, we'll need to take him back in since it's dangerous for him to have a fever that long. Other than that, we all plan on getting lots of rest and taking care of ourselves so we don't end up with the Not Flu too.

Friday, October 16, 2009

Fever All Through the Night

Yesterday, Collin and I ran a couple of errands in the afternoon. Collin was happy as could be, but I suddenly started to feel like I was coming down with something, so we headed home. When we got there, I noticed that his cheeks seemed really flushed, so I unbundled him. When his face stayed red, I took his temperature and it was 101. I choked on my heart. First of all, it's just disconcerting the first time your baby has a fever. But add to that the fact that Collin is coming off of a massive regimen of prednisone, which means that he has pretty much no immune system to protect him against viruses or bacteria. He is also still very low tone, meaning that if he were to get a lot of chest congestion, he wouldn't be able to manage it. These two things add up to a probable stay in the hospital if he were to come down with the flu of any kind. PLUS the fact that he has seizures, which makes any fever more dangerous.

After talking to the neurologist and pediatrician, we decided to start him on Tylenol and just watch him. As soon as the offices closed, his temperature shot up to almost 104. I called around to immediate care centers, but no one would see him because of his age and medical conditions. So it was either Children's Hospital or nothing. We opted for home. I broke out the Dr. Sears baby book, we stripped him down, and started pumping the fluids (one of the perks of having a g-tube baby). By 8:30, we had it down to under 100 and decided to break up the night between the two of us and check on him every hour, since we couldn't risk a sudden spike. Kyle kept watch until two and I took over at three. The temp stayed under 101 most of the night and Collin slept pretty peacefully.

Today we'll be heading to the pediatrician to figure out what is causing the fever and to make sure he doesn't have any infection, since he wouldn't be able to fight it off at all. We can't get in until this afternoon, so we'll be maintaining the fluid and tylenol regimen until then and keeping a close eye on things. I'm not looking forward to going to sit in that swine flu-ridden waiting room. I'll just cover Collin's carseat with a blanket. And maybe wear a mask.

The interesting thing about all of this is that my symptoms that brought us home in the first place went away as soon as Collin's fever started to go down. This crazy mama voodoo has happened before.

Wednesday, October 14, 2009

Sabril: Week 1 -OR- Happy Little Snot

So, we've been on Sabril for a week now and off of Prednisone for three of those days. Because we're off Prednisone, we're also off Zantac and will soon be off calcium. If Sabril works, we will also come off clonazepam. Please oh please.

We have not seen any seizures since starting the Sabril on Tuesday, but we like to say that in a whisper so that Collin doesn't hear us and we try not to think it too loudly either.

The biggest change we've seen is that Collin is happy. He's still a little on the agitated side, but he spends an inordinate amount of time smiling and squealing. He responds to sounds, shakes, changes in light, and touch. He is exploring textures with his fingers and just seems generally more aware of what's going on around him. He's been up more in the night, but nothing horribly disrupting. We will be starting our monthly ophthalmologist appointments in a few weeks to keep a close watch on Collin's retinas to make sure the drug isn't doing damage to his eyes. Since his visual response is so delayed, the only way we'll be able to tell is to actually look inside his squinty little eyeballs. As soon as we see any damage, we'll be stopping the medicine.

Also this week, as Collin's facial tissues slowly started to shrink back toward normal, all of the snot that has apparently been lodged in his head (not sure why - maybe another side effect? - he hasn't acted sick and hasn't had a fever) broke free and coursed down his face. This resulted in dozens of moments like the one captured here, several of which occurred without the availability of anything even resembling a tissue and none of which bothered Collin in the least.

Sunday, October 11, 2009

Breakfast/Therapy

Cereal from Annie Kratzsch on Vimeo.

I've discovered a good way to persuade Collin to do some neck strengthening exercises. This works with cereal, bananas, etc. Or really even just the spoon with nothing on it.

Thursday, October 8, 2009

Yay Friday

It's been a long week, people. We had an extra-crazy Tuesday and Wednesday with three therapies and a two-part occupational therapy evaluation. The evaluation went really well. I love his occupational therapist and I think she is going to be wonderful with Collin. She adores him, too, which shows her excellent judgment.

The Sabril came via FedEx as promised Tuesday morning and we started administering it that afternoon. It seems like it has konked him out for a few hours after taking it (which resulted in a night of not much sleep last night), so we're adjusting the timing of the dose to see if it helps. He is extremely grouchy, which I kind of expected. Med transitions are hard on him in general, plus the fact that we're weaning the prednisone pretty quickly, which can cause headaches. We're trying to give him some leeway and extra snuggles while still helping him stick to his schedule as much as possible. We got a couple of good smiles tonight, which was good medicine for everyone.

In other news, I had outpatient surgery today to have some places on my left arm removed and biopsied. It seemed like a ridiculous ordeal to me just to have four little incisions - I had to put on a hospital gown, get scrubbed down, and the whole nine yards - but it had to be done and I'm glad it's over. My parents came for my mom's fall break and are taking excellent care of both me and Collin while I can't use my arm. I'm trying not to milk the situation too much. Sort of.

Also, our camera batteries died this week and I just got around to remedying that situation, so pictures and/or video will follow soon. I think his face might be deflating a bit, which is nice. He's looking more like baby and less like a squinty-eyed Cabbage Patch Kid.

Monday, October 5, 2009

Sabril, My Hero

So, I got a call this morning from the Sabril call center (Sabril = Vigabatrin). I find it interesting that a drug that was only just approved by the FDA already has a call center set up in the US. But boy am I glad they do. I talked to Claire and she is now my friend. She was ultra professional and helpful and informed me that she received our paperwork this morning and that they would be sending out a free Sabril start kit while they work out the details with our insurance company, ophthalmologist, pharmacy, etc. She is sending it via FedEx and it will be here tomorrow morning before 10:30 am. I think I must have sounded a little confused when she was so speedy and accommodating, because she had to repeat that part. She kept using phrases like, "Would you prefer this or this?" and "I'll be taking care of all of that for you." I almost told her I loved her as we hung up, but figured I'd save that for our next conversation.

Friday, October 2, 2009

Don't Make Us Come Down There

Unfortunately, I was right on the money about the marathon phone day. All I wanted to know today was when our Vigabatrin will be in and what we should do in the meanwhile. I started calling the minute the office opened this morning and was told by the woman who answered the phone that I would hear back from someone within an hour. When I hadn't heard back in THREE hours, I called again, only to be cut off by the person I was talking to so she could tell me that the nurse practitioner was getting ready to call me in a few minutes. When I hadn't heard back an HOUR after that, I called again, but the phones were turned off for lunch. Finally, at 2:00, someone answered the phone. As I explained my situation and my experience thus far with a mix of firmness and courtesy, she had the nerve to interrupt and tell me that they didn't usually give people a window in which to expect a call back. As though that excused the fact that no one followed through. I thought about asking her if that struck her as problematic in any way - that, when your child is having scary seizures, there is no way to get in touch with anyone who knows what they're talking about before 4:00 in the afternoon when the office closes; that office workers make promises, apparently unaware of any supposed office policies; that they have created a rock solid barrier of indifference to keep parents in need from physicians who can help. Instead, I took a deep breath and said that I wanted to speak to someone right away.

I was put through to one of Dr. Awesome's colleagues, who was supremely unhelpful. He basically told me to go back up on the prednisone and call back next week. When I tried to get information about the Vigabatrin, he claimed that he just couldn't give me an answer and that hopefully they would have some information for me next week. I explained that we had completed all the paperwork two weeks ago and asked who I could talk to who would know the answer, but he would not be moved.

So, I called Kyle. At this point, we became the Supremely Effective Kratzsch Good Cop Bad Cop Team. Kyle built on my dogged good cop nagging and slammed them with his scary voice and grown-up tone. I hate to say it, guys, but I think it also had to do with him being a man. I think these people are used to giving moms the run around. Within half an hour, I got a call from the physician's assistant updating me on the situation and how she was fast tracking it. Five minutes later, the nurse practitioner called and said that if I could come down and sign one more form, she would walk it over to the hospital herself to finish it up and fax it in. I threw Collin in the car, and fifteen minutes later, the Vigabatrin paperwork was done and submitted. We should hear something by Monday. In the meanwhile, we will stop the wean, slightly increase his dose, and just watch to see how he does.

Collin is fine, other than being a grouch face from the prednisone wean. He was extremely sleepy all morning from the seizures, but had some happy time this afternoon. These days are a lot harder on us than him, I think.

Rough Night

A few hours after my cutesy little post last night, Collin woke us up having seizures. Some were similar to the spasms he's had all along and some were different - longer and with shaking. They made him cry. It had been over a week since we had seen any seizures at all - a timeframe that coincided with starting the B6. I had just started to let myself believe that maybe Collin really did just have a B6 deficiency and we would finally have an answer and a treatment. I didn't get much in the way of sleep.

So, today will be one of those marathon phone call days with the neurologist's office. Dr. Awesome is currently out of the country for two weeks, so we won't be able to rely on his man-of-action-powers. The next medicine we're trying was just made available in the U.S. last month and the paperwork is a long process, but we've been working on it for two weeks. I don't know how long it will take to get it or what we will do in the meanwhile in terms of controlling the seizures.

One thing we will do is focus on Collin. When I get especially anxious or discouraged about our situation, Kyle will hold Collin out to me and say 'Does this look like crisis?' I can think of a lot of things to say back - that that's what makes it so scary, that our whole life feels like a crisis sometimes right now - but usually I just take our son and then take a deep breath.

Thursday, October 1, 2009

Shorty

Apparently one of the side effects of prednisone and other steroids, apart from causing weight gain, is that it inhibits growth. Or, in Collin's case, stops it altogether. He has not grown at all in almost 2 months now. Lengthwise, that is. He's not even on the charts for length anymore, though he is in the 95th percentile of weight for height - meaning that only 5 percent of all babies his length are fatter than him. This is where I make a half-sad-half-amused face. I don't think they have an emoticon for that.

The result (besides his nutritionist keeping a super tight rein on his calories) is that we have to put him in 9 month clothes because we can't snap the 6 month clothes around his belly and legs. Unfortunately, 9 month clothes are much too long, so his sleeves and pant legs are rolled up twice. We have also had to temporarily abandon cloth diapers because his legs are so fat that, with the extra bulk, he can't kick at all. But he does hold the baby home run record.