Blip

Small blip on the radar today. Giac had a seizure, first one since last June, 3rd in his life. He woke up to it. I was in the shower when Louis reported that Giac was just sitting in bed, not moving. I figured he was just sleepy but when I saw him I immediately knew what was happening.

The comforting thing is how over time I feel less scared by and more competent to deal with these things. I moved him to my bed, got the medicine to stop the seizure (given to us after last summer's seizure), gave him the medicine, called the doctor to report/get further instruction, kept an eye on Giac's response, and made arrangements for Louis' ride to school.

Giac slept all morning, waking only briefly a couple of times to gag/retch and a third time to cry that his head hurt (both side effects of the medicine). I gave him ibuprofen and when he woke around lunch time, he was his normal self -- excited that the postman had arrived with the Lego Star Wars Star Destroyer set that he has been working for 2 months to earn by eating full meals at school. See picture of complete build below, it took Louis only a couple of hours unassisted.

Funniest thing was how on the same page the boys were. Louis could have cared less that Giac had a seizure, only that Giac would be able to stay home for the day while he had to go to school. Louis' only consolation was that Giac would be so sleepy from the meds that he would be unable to play. Giac, likewise, when conscious enough to speak, first wanted to know only whether it was a school day and second told me that he couldn't go because "he had a fever." Later, when he was more coherent, he rejoiced that Louis had to go to school and he didn't. Louis, in turn, at bath time felt that, because Giac now has to go for a blood draw tomorrow, then they would finally be even. Geezam. How their little minds work!

So, we went up on Giac's routine seizure prevention medicine today, and will see what the future brings. I plan to keep him home until I can get the doctor's orders changed for school so that the teacher is authorized to administer the seizure stopping med -- hopefully I can get that done in a day. Of course, there's always paperwork to be done...

Happy Tube Out Day!!!

It's done! Tube's out! We couldn't wait anymore. Decided Thursday at dinner, did it 24 hours later. Had a grand celebration with friends and family, a really really special event. For those who couldn't be with us, it's not too late to share the experience -- before, during and after.

In case you can't totally understand the 2nd video, it's Giac saying how he plans to shoot the old tube from his toy crossbow at the mean witch at Disney World when he goes in late November.

As for the 3rd video, the refrain is "Happy Tube Out Day to You." The cake read the same, but I forgot to take a picture of it.

RIP Frizzle

It is with great sadness that I share news of Frizzle's passing last week, the fatal result of a congenital defect (he starved to death because he couldn't eat enough with his cross beak). The children took it in stride, while I reflected on the fact that Giac would have met the same end absent intensive and sophisticated medical intervention. Giac wasn't born with a cross beak, of course, but his heart defect resulted in feeding difficulties, "failure to thrive", a gastronomy tube (GT) placement at 3 months old (at which point he weighed less than at birth), and almost 3 years of complete dependence on tube feedings to survive and grow. Two years ago, at his 3rd heart surgery, he started to eat in earnest; he stopped using his GT last December; and, in the coming weeks we plan to remove his tube altogether. While it may seem silly to liken the lives of a boy and a chicken, it is the simple truth that a feeding tube saved my son's life. When we take the GT out (stay tuned for party details!), we will give thanks for and gratefully celebrate both its life-giving aid and the accomplishment of growing into a life free of need for it.

School

The new school year is in its 3rd week for Louis and 2nd for Giac.

Louis lucked into an older, mellower teacher than he had last year, as did his buddy Cassidy who he's now in class with for the 3rd year in a row. (I say lucked but really I had his 1st grade teacher and the child psychologist he saw briefly last year work on getting this done.) The new teacher is easy on conduct (A's everyday this year whereas last year he was often "pulling tickets") and homework (short assignments not more than twice a week his year whereas last year it was long ones everyday but Friday). So, he is feeling better about school, which in turn makes me feel better.

Giac is in a public pre-k4 program at Truman Montessori. It's a "reverse mainstream" class with a teacher, 2 assistants, and 12 kids (5 of whom are special ed and 7 who are regular ed). The first day had me in total meltdown. Despite hours and days of tests to get Giac the special education classification "Other Health Impaired" and hours and days of meetings to get his "Individualized Education Program" developed to meet his special needs, on day 1, in short, they seemed to have missed the memo on his feeding needs and asthma.

They were unprepared to provide the needed feeding support. Immediately after our arrival, he went to the cafeteria for breakfast with the assistants and I stayed in the classroom for orientation with the teacher. When he returned and I asked the assistant how he did, she said fine. "So, he ate everything?" I asked. No, she said, there wasn't enough time. I responded that of course 20 minutes was not long enough, he routinely takes twice that long. There was a blank stare followed by a "I'll have to see what we can work out...."

They handled his asthma equally impressively. He was mid-flare that morning, so I asked that he a) stay in at second recess (limiting his exposure to environmental allergy triggers), b) be given a nebulizer treatment during second recess to tame his flare, and c) not wait in the gym (unairconditioned but for giant wall-mounted exhaust fans blowing in outside air at high volume) around carpool drop off/pick up like the other kids (limiting his exposure to environmental allergy triggers), nor should his 3x/week adaptive PE class be taught in that space.

I exited the school through the exhaust fan wind tunnel gym and sobbed to my car and home where I made Andre meet me to hear what a terrible mother I felt like for putting him in this situation, for my own benefit of course (so Andre and I could more easily balance work). Then I went for a recovery swim to regain enough composure to work. And then...at 2 p.m., the teacher called me to say that Giac spent half the day eating and, while she was confident that she could meet his educational needs, she wasn't sure she could meet his health needs. This time anger replaces the tears. How could they have sold me this bill of goods?! He couldn't be accommodated in a special ed classroom??? Where were we supposed to go from there??? The teacher said that she and the OT felt it would be best if we met asap to come up with a feeding plan.

Adding injury to insult, when I picked him up at the end of the day. They had failed to warm his food from home as requested resulting in his not eating it all bc the texture of brown rice when cold is harder to chew/swallow. And, far worse, the school nurse had decided he didn't need his neb and so didn't give it. Consequently, he came home with a rattle/wheeze worse that when I left him and bad enough that I kept him home the next day to get him back to baseline.

I spent all of Tuesday contacting the powers that be: nursing supervisor, disability rights advocate, and pediatrician to get the Day 1 errors corrected, as well as getting a space held at his old private school in case the public school placement fell through. Most f all, I quickly adapted to the possibility of things not going as planned, of another year of twisting ourselves into pretzels to keep work and Giac together.

On Wednesday, everyone hopped to. When I pulled up at the car rider drop off, the teacher was there waiting: Did I have the new orders from the doctor about when to give neb treatments? She called a few hours later to set a time for the meeting, now to also include the special ed director, school principal and nurse supervisor. That day he ate everything and asthma went fine. Thursday's meeting was reassuring. All of them seemed genuinely committed to meeting his needs. Most meaningful to me was my and the teacher's sharing of our complementary fears. She feared unintentionally harming him for lack of understanding/knowledge abt his needs/time to address given the competing demand of the other children. I feared they wouldn't take good care of my baby. The self-imposed pressure of making this transition without losing weight so that we would meet our goal of taking his tube out in October as planned doesn't help, of course. I see solid support this year as critical to his successful transition to a regular ed classroom at his brother's school next year, which is really important to him and me. The feeding tube is only one step (albeit a huge one) in this direction.

Anyway, since that big bad start, he has done great - eating and drinking everything almost everyday. Yesterday he worried me bc he was hard to wake, refused to eat breakfast, complained of a headache, cried when dropped at school... I feared regressing. Indeed, his appetite was down all day, but today he was back on his game. So, I just had to trust that he can weather the blips. It's my challenge probably more than his. His big motivator is a $150 Lego Star Wars set that I have promised to get for him when he has earned 100 "chicken bucks." He gets 1 buck for each meal (including glass of milk) that he completes. So far, in less than 3 weeks, he has garnered 27! I had better save my pennies! I expect he will have it before Halloween.

Keep your fingers crossed for us -- or me at least.

21 chickens and counting (down)

Well, we've slowly started the chicken count down. Earlier this summer, 2 of our 29 found their way out of the fence and were last seen "heading toward University Avenue." A couple of weeks ago, when the grass started showing signs of wear and the new big coop was firmly in place, we gave a rooster and 4 hens to our friend 'tit Louis Michot, complete with old small coop.

Yesterday, Rose, who rules our roost, officially turned the corner from pet to pot. He attacked Giac twice, earning him a speedy transfer to our friend (and Giac's pediatrician)'s farm. However beautiful he may be, mean is not only unwelcome but intolerable.


Frizzle, our most gentle and "special" chicken, remains the favorite. His temperment matches our favorite from last year's chicks, "Louie" (aka "Red"). Both of them run up to you like a dog, seeking a leg rub or pet. Poor Frizzle was born with a beak that crosses at a nearly 90 degree angle, making it a real challenge for him to eat/drink. He spends most of his day at the feeder working to get food in because of his birth defect. The parallel between Frizzle and Giac re: congenital defects and resulting feeding difficulties is about eerie. And so we just can't help but love him.

I did it!

Last summer, I set a goal for myself: to place in my age group by the end of this summer's triathlon season. And, at Rocketchix II in Baton Rouge this past weekend, I did it! I did it!! I did it!!! 2nd in my age group and 10th overall in a field of 400! I couldn't believe it when I saw the posted results. It was so exciting. I was thrilled to have met my age group goal (exceeded it really, bc I was only going for 3rd), and clearly from the focused effort I had put into getting stronger on the bike since early spring. Most satisfying of all was seeing how far I have come physically and emotionally in the past few years.

Looking back on it, 3 years ago I was a total mess. In the summer of 2006 (when Giac was 18 months and between his 2nd and 3rd heart surgery), it was all I could do to join a weekly water aerobics class -- full of old, overweight and/or sick people -- at the neighborhood hospital once a week. My knee was bothering me so much that I wasn't able to do any weight bearing exercise (not even walking), and it was a huge stretch emotionally to leave Giacomo at home to do something to care for myself for even that brief time. In the beginning, that class was a workout for body and soul.

By summer 2007, I was ready to graduate from water aerobics to lap swimming. Serendipitously, a physical therapist at the hospital pool told me about an adult swim team type class at a local gym. Within a week, I joined up at the gym and started "master swim" (adult group swim practices with a coach for 90 minutes twice a week). There I made friends who loved to exercise and invited me to join them in triathlons. It took me a few months to get my courage up, but I did my first tri in October. It was only a week or so after we got home from Giac's 3rd open heart, but I registered for the race before we left to give me something post-op to look forward to for myself.

The outcome of that experience was ongoing master swim classes and a new bike (February 2008). I started looking for the bike in November, but it took me a few months to overcome the sticker shock. The way I did that was by selling enough baby stuff out of the attic on ebay to raise about half of the bike purchase price. Et voila! Self-indulgent guilt, be gone!

I rode that spring with the beginner group every Saturday morning doing 20-30 miles at a 14-16 mph pace. In the summer, I did 4 more tris (including a big one in Austin where my best friend from CA joined me and herself got hooked on the sport) and joined up with the Baton Rouge Bike Club Intermediate Group to do longer, faster rides (40-50 miles and 15-17 mph). They were ever so kind, nursing this beginning rider along. In the final tri of that season (October), I placed in my age group in the same tri that was my 1st the year before. It didn't feel like much bc it was such a small, non-competitive race, but it did set my sights for this summer.

In early 2009, I kept at it with the Baton Rouge intermediate group, and through them ironically, got introduced to a Lafayette intermediate group. Through the spring, I did a number of "metrics" (60 miles), me and my equally "slow" friend Rhonda plugging along an hour behind the "fast" guys but proudly covering the very same distance. In early summer, I rejoined master swim (having shifted to solo swimming most of the past year) and added 2 very early morning interval training rides during the week. I also mustered the courage to join the racing team guys a couple of times for their monthly time trials. Again, I was the slowest of the bunch, but so confidence-inspired to a) simply join them for the event and b) learn that I could go faster than I imagined.

Over the past couple of months, I have crept up into the 18-20 mph range putting in 70-90 miles a week. I can hang at the back of the fast pack for the first 10-15 miles of their ride -- unthinkable a year ago. I have my sights set on a new (up from entry-level) bike for my next tri season, when I will move up to the 40-44 year old age group (gasp!). My husband says I'm hooked -- and this week asked to give me the new bike for my birthday/Christmas present. I say I am so happy to feel so good, so very back to life.

End of an era

While it ain't over til it's over, I can't help but think that our family is approaching the end of an era. Our progress may have been painfully slow, but is so very plain to see (and mightily heartening) looking back. For instance, night before last, I emailed Giac's pediatrician, feeling compelled to touch base since we had not been to his office since April. (I don't think we have ever gone that long btwn doctor visits before in all his life.) And, yesterday morning, he replied, agreeing that we could remove Giac's GT after 6 months of non-use, giving confidence to my intention to do it in October (before his 5th birthday) if Giac keeps up the excellent work. Later the same morning, I bought school uniforms for both boys. Louis (age 7, shirt size 6, pant size 5) & Giac (age 4, shirt size 3, pant size 2 -- minus 3 inches of length per leg). By afternoon, Giac's monogrammed blue camo junior original LLBean backpack arrived by mail.

With less than 3 weeks left of this pre-school life, I am savoring the part-time work that I currently enjoy (despite how hard I fought "being forced into" it by life circumstances), and mourning in advance its loss as my employers (and Andre's) expect us to resume more ordinary work schedules (and potentially increased responsibility) when Giac settles into pre-k4. I simply can't believe that this incredibly difficult, nearly 5 years appears to be shortly behind us. Despite a small amount of superstition (not wanting to jinx anything), I feel great hope for our future, that indeed we can live "normal," relatively joyful and easy lives again. As the woman who brought me back to state employment said today, "Who knew? Remember when we didn't know if he would live?" I most certainly do, and I am so grateful that he not only has lived, but that he truly prospers and that we have all grown so much richer for the experience.