Billeaud Steele Family

Happy Birthday to Me

2009-12-04T18:38:00.005-06:00

Monday I turned 39! Normally, my birthday is no big deal to me. But this year, I've been celebrating it for months. It just feels like a major turning point. The first anniversary of the brain drugs that helped me recover emotionally from 5 (arguably 6) very rough years. The second anniversary of my entry to triathlon life (and physical therapy) that helped me regain physical fitness and an active lifestyle that fell off a cliff with Giac's first hospital admission at 6 days old. The surgical finale to my childbearing years in October -- goodbye fallopian tubes and hello relief from eliminating any future risk of the psychiatric hospitalization I narrowly avoided during the preschool years of the two children I already have.

And, last but not least, the long awaited start of full time (public) school (with special education supports) for Giacomo, which freed me to get my career back on track. This summer I was asked to consider a significant promotion, one that was unthinkable before now. Effective this week, I took that promotion and moved from direct supervision of 1 person to direct supervision of 12 and indirect supervision of 740.

I questioned my boss today if he knew the proportions of his leap of faith in giving me this opportunity. Amazingly, he is perfectly comfortable with it. His confidence makes me feel good, and I know that it comes from knowing me "before." Before I had to scale every part of me back to survive my young family. Before I had to cut back on my hours and scope of work, then quit altogether for almost a year, then come back half-time in a position far "beneath" what I had left. I cried at my desk for months, miserable about leaving Giac at home with a nurse so I could to go to a job that I didn't want or feel like I deserved but needed desperately to provide him with health coverage. I was so depressed. Nevermind that his mere survival was far from given at that time. My self-confidence took a huge hit.

The irony is that I have succeeded at so many (more) ambitious things in the past that this promotion should be no big deal for me. Yet from where I have been in recent years, it is a real stretch me. Since August, I've gone up on my weekly work schedule from 24 to 32 hours, adjusted my daily schedule to wake at 5 a.m. to exercise without impacting work or family, and gotten used to having to squeeze household responsibilities in the evening and weekends. I feel spoiled just saying this since most parents work 40+ hours a week and take all this for granted -- and without working from home on a flexible schedule. And yet, they have not been where I have been -- to hell and back. It is the "back" part that thrills me about this time of my life, that makes me want to celebrate turning 39 so much.

Concretely, I celebrated by building myself a ridiculously expensive custom road bike. I call it my "lifetime" bike. It took a lot of talking myself into. Didn't think I was worth it, I guess. But the more I became aware of just how much I want to commemorate this time -- and the more I thought about how much Andre has spent on boats, trailers, camps, etc. -- the more into the bike build I got. I invested in a deluxe rack for the car to tote the deluxe bike, and even hired a coach for the month to see what happens if I take a more structured approach to "training."

I hesitated for a long time about sharing all this on the blog because it is public and may seem vain. But, I spent 2 years in therapy being coached to take care of myself, to think I was "worth it" (worth taking the time and energy to care for myself first), and dammit the woman was right. May be cliche, but it's like the airlines say, "put the (oxygen) mask on yourself first and then the child." I just feel so much better. And this blog has replaced my personal journal as well as serving as the family scrapbook (I had the first 18 months printed and bound recently), so it was important to me to have this moment in my heart recorded here. So be it.

Giac

2009-11-14T10:48:00.010-06:00

Louis is at Lego Robotics class, Giac is asleep, and the mountain of clean clothes on the couch has been folded (enough) that I can spare a few minutes for an update. Let's see. Giac's seizure last month resulted in the assignment of a nurse to him, one-on-one. She meets him at carpool drop off and stays with him all day -- in the classroom, in the lunchroom, on the playground.... At first, I saw it as a set back, going full circle to how he started school.

Recall that when he was almost 2 years old, the Mother's Day Out required he attend with a nurse. When he was almost 3 years old, he moved to a Montessori school because they didn't require he attend with a nurse. When he was almost 4 years old, the Montessori school did not invite him back because he required a nurse. That year two more Mother's Day Outs would have him without a nurse, but only until lunch when he required a nurse (or parent) for tube feeding. Now, at almost 5 years old, he attends a public preschool in "reverse mainstream" class with all sorts of supports for his "other health impaired," special education status. For two short months, he made it there with "just" occupational and physical therapy and extra time to self-feed. And, then, back came the nurse. Le voila.

I thought that when we took the feeding tube out we were on our way to a mainstream kindergarten at the same school as his brother. And, maybe that'll come to pass. But, what I have learned in these past few years is that the more "special" a child is, the more limited the school "choices" become. Yet, what he needs is what he needs, and I've had to accept that "all" is better than "nothing" when it comes to school supports. With them, he can attend school like a "regular" kid, and Andre and I can work like "regular" parents. Without them, we are unemployed homeschoolers, and that will not do.

Beyond the nurse, we continue to adjust Giac's seizure control meds. Too much and he is a zombie. Too little and he has seizures (tho none since the one last month). For almost two weeks, he's been going from alert to stoned to asleep within 30 minutes of his morning dose. So, I'm experimenting to get it as high as I can without the sedation side effect. There is also the ear infection from hell, which finally with the addition of a 3rd antibiotic appears to be on the mend. At least we enjoy our pediatrician, since we get to see him so often.

Oh, and at our last visit a couple of days ago we got orders for a first round of testing for "short stature." Giac is a full 5 inches shorter than what he minimally "should be." His weight has steadily followed the 5th percentile growth curve, and for a while his height was proportionate. But in recent years, his height has fallen off the curve, assuming the shape of a flat line (he grew only 2.5 inches over the past 2 years). Blood tests and an xray to start. Referral to endocrinologist likely to follow. Possibly growth hormones. All I know is that his asthma and ear infections are forecast to improve with linear growth, so I would like to see some. Plus, he is only barely in a size 2T pants though very nearly 5. His size has affected his physical abilities as well for some time (legs being too short to reach the pedals on a 12-inch bike with training wheels), and as he gets older and shorter relative to his peers it will be a social issue too. We've been watching for a growth spurt for months, but have had none. Could be his asthma meds stunting his growth. Could be the transition from tube feeding. Could be his whole health history, or... All I know is that it's time to see what can be done.

Blip

2009-10-06T19:37:00.006-05:00

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!!!

2009-09-12T15:14:00.008-05:00

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

2009-09-10T15:13:00.004-05:00

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

2009-08-26T21:18:00.003-05:00

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)

2009-08-26T18:33:00.005-05:00

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!

2009-08-05T11:51:00.006-05:00

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

2009-07-23T21:17:00.003-05:00

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.

Sea Momster

2009-07-14T22:28:00.003-05:00

I had a fantastic trip to L.A. this weekend hosted by my friend Dawn. We ate Indian and saw Bruno on Friday. Saturday we biked the Pacific Coast Highway with a group from the L.A. tri club, ate a fancy Italian lunch in Malibu, went bike window shopping in Santa Monica, then had a 90-minute massage in Ojai. Sunday we took a half mile ocean swim at Zuma beach (FANTASTIC!! I wish the Pacific Ocean was closer!) and ate grilled fish tacos overlooking the water, before I had to fly out to Utah where on Monday I presented on my agency's telework program which was the whole impetus for my trip out West. What terrific fun!

Small Miracles

2009-07-01T12:42:00.003-05:00

I can't forget to share so many of the little wins that Giac has been having this summer.

Like today, he starts swimming lessons. Not only is he energetic enough, but he doesn't get blue and shiver like he used to, both of which make the pool a whole lot more fun.

Two weeks ago, he went back to Asbury Methodist preschool (just for 4 weeks this summer), and has been consistently SELF-feeding his entire lunch and so able to stay all day! He really surprised me with this one. And, all of this smack in the middle of a sinus infection and oral antibiotics course, which usually disrupts his eating.

About the same time, he cut out his nap. Although his father (who goes to work for 6 a.m. so that we can share Giac's care during the day) was enjoying the siesta, Giac had too much energy at night -- aggravating his tired brother to no end and staying up til 11 pm... Now, with no nap, he has both a reasonable bedtime and can stay at school til it's over at 2:30 p.m. Having him at school all day also makes my work at home much more focused and peaceful.

I was reminded of the need to comment on these small miracles last night when I checked our little heart sister Julianne's page and saw that she is progressing right along with her eating/GT to oral feeding transition. Also, last week, when we went in for the sinus infection and saw our back up to the back up pediatrician (our primary and secondary were on vacation). She was the doctor who was in the office the day that our then primary (and now secondary) pediatrician saw Giac at 6 days old and rushed us to the ICU. She remarked on what a miracle Giac is. I responded that I can't focus on that. I can't live always thinking about how unbelievable it is that he survived. It is too close to the flip side of how he could have died; how fragile life is. From there, we can't fully live. To live fully, I have to assume he is going to live and treat him like it. It means things like undoing the spoiling that came with his challenges at defying the odds, letting him take ordinary risks, and appreciating not only the miraculous gift of his life but of all of our lives. You have to always look at the big picture to keep things in perspective.

Feminist Mom Resources

2009-07-01T12:36:00.002-05:00

In case you know a mom who sounds like my last post, there are a few resources I feel compelled to share. One is a magazine called Brain, Child. Find out more about it here http://www.brainchildmag.com/ Another is an online advocacy group called MomsRising. More on that here http://www.momsrising.org/ The third is a book called "Mommy Wars". More on that here http://www.amazon.com/Mommy-Wars-Stay-at-Home-Choices-Families/dp/0812974484/ref=sr_1_1?ie=UTF8&s=books&qid=1246470035&sr=8-1
All of these offer tremendous support for the kinds of choices I have made.

The beauty of 4 and 7

2009-06-30T21:52:00.002-05:00

The beauty of kids ages 4 and 7 is how much they are able to understand and do for themselves, and in turn how fully I am able to be me.

Until fairly recently, I felt badly about not much liking infants or even toddlers. At a quilting circle a little over two years ago, a number of moms (two of them very pregnant) oohed over another's newborn. I declined to hold the baby in the routine passing and longing. I was enjoying the break from my own baby. I shared that I liken newborns to the pupa stage of butterflies, and think that human gestation would be better at 18 months than 9 (if women could tolerate it), because at least by then they are modestly self-supporting (stand, walk, self-feed, let alone able to hold their heads up) and able to communicate in words (even if a limited vocabulary and sense of self awareness). In response, one of the pregnant women remarked that "something inside of [me] was broken." My reaction: thanks for your support, sister.

These days, I understand that every mom is different. Not every mom flourishes in the stay at home role. Some of us would lose our minds if we didn't work. Not every mom is cut out to homeschool. Some breathe a sigh of relief when their kids board the school bus in the morning. (As my mother once said, I am the type you would read about in the paper [if I tried to stay home and homeschool]; an encouraging comment from one's mother, but not untrue.) Not everyone relishes the newborn smell. Some of us would prefer to delegate responsibility for the pupa stage to someone else. Regardless, speaking only for myself as a member of the "some of us" group, I am just as dedicated, but favor older kids.

That said, I LOVE that Louis can brush his own teeth; scrounge up his own food and drink when needed; quitely entertain himself while I am on 2-hour long conference calls... I love that Giac can walk on his own into/around the grocery store; can dress himself; is able to tend to his own bathroom needs. I am ecstatic that he is self-aware and skilled enough at speech to tell me exactly how he feels in his body so that we can manage his health together; able to eat and drink by mouth; has outgrown his nap almost entirely -- all easing my fears abt his ability to successfully attend full day school. I am relieved that Giac is able to climb the treehouse; swing on a big kid swing; and rarely falls anymore. I am thrilled that he has favorite food runs like every other kid his age; that he and his brother are able to play peacefully together most of the time; and that he can pretty much stand his ground when his brother sneaks in a push, thump or hit. I can see the light at the end of the pre-school phase of my motherhood tunnel, where there was so very little space for my needs, and my personal and professonal choices were made for my kids. I am just so SO very happy that my kids are 4 and 7.

Giac addendum

2009-06-19T19:22:00.002-05:00

Giac's had his 6-month follow up cardiology visit today, the outcome of which is no more enalapril and a downgrade to annual check ups! Dr. Brumund says his heart function is great and so no need for either that medication or more frequent visits. That gets his daily medication count to 8 at least! And I am hoping to drop down to 7 (less the daily prophylaxis dose of antibiotics) with good results on the immunity action plan started yesterday. Brumund also doesn't think Giac will need to go to Boston as soon as they had thought to have his stent dialated. Last summer they said maybe this winter, but given how slowly Giac grows and how large the stent is, he thinks we can get another year or two out of it as is. Last, he doesn't think that either Giac's growth rate or his ability to weather illness is likely to be adversely impacted by taking his tube out in the next 6-12 months. He says he has another kid with Giac's defect and growth issues and he is only 33 pounds at 8 years old with a big belly and stick limbs (Giac is 29 pounds at 4 1/2 years old), which reassures me that it just is what it is, tube or no tube. So all good news.

Giac

2009-06-18T20:15:00.003-05:00

Today was all Giacomo.

First thing this morning, I had a meeting with the director of the parent child center on the outcome of his special education evaluation. It's official, he merits the classification "Other Health Impaired" and qualifies for four "supports/services". The first is Occupational Therapy to develop his fine motor skills (he scored in the 16th percentile on that with 50 being the norm). The second is Adaptive Physical Education, which provides for additional supervision for the risk of bleeding from the blood thinner he takes, as well as the ability for him to take it easy if his energy/stamina is low for health reasons. The third is Feeding Support, or someone to feed him his lunch if he doesn't self-feed. The fourth is the ability to attend on a less than full time basis, as able/needed because of his health ups & downs. (I should add that he scored average in gross motor, self-help and social skills areas and high above average in the cognitive area.)

We won't do the Individualized Education Plan (IEP) (it spells out exactly what school staff will have to do to meet his needs) until mid/late July, but I am thrilled with the outcome so far. I am optimistic that these "extras" will give him and us more freedom than we have enjoyed in private schools to date. I have no illusions that I will have to stay on top of it to see that he gets what he needs in actuality, regardless of what the IEP says. But tenacity is not something I am short on, so I'm not worried.

Mid-morning we saw a new allergist/immunologist recommended by Giac's pediatrician. This visit is one of a two-part plan to free him from his feeding tube soon (the next 6-12 months?). He has been eating on his own since November, but not without falling back on the tube when sick. The fall back periods have gotten shorter over time, which is good. But the doctors want to see him not fall back on the tube at all before the tube comes out. So, my strategy is to minimize the illnesses that chronically take him down: asthma flares and ear/sinus infections.

Both the breathing trouble from the asthma and the medicines used to treat it make Giac eat less. So, today we continued a series of efforts to prevent common sources of bacterial infection/boost his immune system (vaccination at the end of the doctor's visit today), identify any immune deficiencies (blood work following the doctor's appointment and again in 6 weeks), and apply the optimal mix of anti-inflamatory meds. The doctor made a favorable first impression and I look forward to what he will have to offer when we go back in a couple of months.

In July, we'll see an ENT about the possiblity of ear tube placement without general anesthesia, since I will not allow it for anything voluntary following the 2005 stroke caused by a blood pressure drop caused by anesthesia. If we can get tubes, then we can identify infections sooner and treat them topically rather than with oral antibiotics, which upset his stomach and make him eat less.

I expect he will continue to eat better through illness even if the above plan doesn't pan out, but I think he will get there faster if we can minimize the illnesses. So, on we press.

First Week of June

2009-06-07T15:59:00.004-05:00

Let's see. A couple of weeks ago, we hung a tire horse swing on the live oak in the front yard, which both boys love. This Monday, Louis read a book to his mouse "Rhino" (yes, on our living room couch). Tuesday, Nini was here all day, while I worked out of town. That evening my friend Rhonda and I did a "2-man" bike time trial that was fun. Wednesday, the boys and I went to see a matinee of Up in 3-D; we all had dinner at Andre's parents' house; and Louis and I took a trip to the ER for 4 stitches in his right index finger (it was a bloody end to a raucus boy-dog round-the-kitchen-table chase). Thursday, we moved the now 3-week old chicks from their cardboard box into a pen in the back yard (the one pictured above is "Frizzle" and the first of 26 to earn itself a name), and Louis wrapped up his 4-day turtle sculpting art camp. ("Delightful" is the word that comes to mind when describing my experience of taking a perfectly healthy child to the ER for a perfectly ordinary minor injury. I had never been so lucky as to have an ER trip like that before. If they could all be so plain.) Friday, we took it easy, including bathtub swimming with a new pair of goggles. Saturday, Andre repaired a leak in the roof. Today, I tried out a new early morning bike ride group (which was great bc they were just the right speed/distance and I was back home by 9 am); Louis had friend from school overe to play (and show off his stitches); and, Andre installed the last windows in the cabin. Tomorrow on to 5 full days of CitySmarts camp for Louis, an arts and science combo to do with the design/build of skyscrapers, bridges and dams. And regular old home and work for the other 3 of us.

Pics

2009-05-22T19:21:00.006-05:00

New big boy swing; Claude and backyard harvest; Giac the chick magnet; and Louis with mice and oreo teeth

Chicks, Mice and Special Ed

2009-05-22T18:54:00.004-05:00

This week was full of happenings.

On Saturday, Lou, Giac and I went to the pet store to return a dog collar and leash and came home with 2 mice. Andre asked me what I was thinking, and I said it didn't need much thought: within a week, they will be dead or lost, no real commitment required. On Sunday, Lou lost one mouse and Andre told him I would take him to the store to replace it with another one. Now what was he thinking? Obviously a weak moment.

On Monday, our 26 day-old chicks arrived. I took Louis to school a little late so he could go with us to the Post Office to pick them up, and then in checking him in brought the chicks in so all his classmates could see. They have been under a heat lamp in a box in our kitchen since. Andre and I are giving them less than 2 weeks to outgrow the box. We're not sure where they will go after that since they will be still too small for the yard (predators) and in need of heat. Stay tuned to find out what we do.

On Tuesday, Louis had his last day of first grade, including class awards. His peers voted him "best artist." Nothing unexpected there. He went to Nonna and Poppy's house that afternoon and hasn't been seen (and barely heard from) since.

Wednesday through today, Giacomo spent an hour a day being evaluated for special education. He was seen by speech, occupational and physical therapists, an adaptive PE teacher, and a psychologist and a PhD educator who together assess intellectual ability. We won't get the written report until mid-June but I was excited to hear today that he is very bright. He scored in the 99th percentile in some of the intellectual areas (problem solving?). Not enough to be "gifted" yet, but the psychologist thought that maybe by 6 or 7. As it was explained to me, the lower the age, the higher the bar to pass to be labeled gifted. He also did not meet criteria for adaptive PE or physical therapy. Not sure about occupational therapy (fine motor, e.g., writing, self-feeding with utensils), but expect that to be his lowest scoring area.

While I LOVE him scoring high, I am a little nervous that he will score too high to qualify for special ed. It's not that I want him to "be special ed", but I strongly believe that he will need extra support, namely in the area of feeding, stamina/endurance, seizure and bleeding precautions, and asthma management. He could get either an Individualized Education Plan (IEP) which requires a special ed categorization (specifically, he would most likely get "Other Health Impaired"), or an Individualized Health Plan (IHP) which would cover only medical needs. I prefer the IEP bc it will give him far more protections, but will have to wait and see what the evaluation report says. If the say he doesn't meet spec ed criteria, I'm not sure where that leaves us. He has been assured a spot in that smaller, reverse mainstream class, and can be there either as a "special ed" or "regular ed" student. Only what they are obligated to do for him in that classroom is up in the air. But best to take it one step at a time.

As for the weekend, now both boys are at Nonna and Poppy's and Andre and I are but a distant memory to them. They would be perfectly fine with an early August return date, I am sure. But they have only until Sunday. In the meantime, biking, shrimping and other adult recreation is planned.

A happy Memorial Day weekend to all!

Summer Garden

2009-05-11T22:07:00.002-05:00

Giac and I harvested the first green beans from our summer garden this morning. (Andre has already made pesto from the basil.) Lou and Dad gathered more beans more this afternoon. We all ate some of the beans in stir fry tonight for dinner, together with fried shrimp from Andre's 90 pound cast net catch south of Houma on Friday.

Weekend before last I did the best to date in my brief triathlon history, taking minutes off my Rocketchix time. I ranked higher overall (33 of 360 vs. 44) despite dropping in my age group (from 5 to 9) only bc so many blasted 35-39 year olds showed up this time! I also did my first bike time trial last Tuesday. Though I was the slowest there (it's all uber bike dudes), I was proud of myself for showing (I was too intimidated before) and rode faster than I thought I could (18.3 mph average for 10 miles). I am keeping up 3x/week rides, between 20 and 50 miles each, and trying to ride with faster rides to get my pace up. I figure I should be able to place in my age group at the Rocketchix race in August if I can just get my bike pace up another mph or so. I am working hard at kicking some middle age lady butt!

Andre wants me to add that he placed 7 of 22 in his age group on a run 2 weeks ago -- 3 cheers for him! Oh and he needs to say that he hardly trained...

Monday I did get confimation that Giac would get a spot in the class I wrote abt last post. I formally registered him on Tuesday and began the special ed evaluation process on Thursday. Next Weds through Friday, he'll go in go in for an hour a day for assessment. We'll see what they say, but at least it's in process.

Eyes are shutting. Off to bed.

Boudin for breakfast

2009-05-02T21:26:00.003-05:00

You know your son is a coon ass when...he asks for boudin for breakfast! Last weekend was Festival International in Lafayette and Sat we boiled crawfish and grilled boudin. I have been off camera duty too long, but take my word for it when I tell you that that boy can peel his own tail meat and eat a whole link of Charlie-T's bou in one sitting. : )

Whether the new allergy meds or the passing of the worst of the tree pollen, Giac's asthma is back under control and he has happily been spending lots of time outside. Just yesterday we replaced his "baby" swing with a big boy one, and today he got a three wheeled scooter (at the physical therapist's suggestion). We're at Nonna and Poppy's this weekend (mainly for my Rocketchix race tomorrow) and the boys are in hog heaven. Today they went to the farmers market and the USS Kidd while I rode my bike. Andre was home with brother in law Whitney working on the cabin today and tomorrow will go to Pecan Island to mow the grass at our "camp" (framed pilings with a dream of being a house). He says after that he's going wind surfing at Cypremort Point and though I fully encourge such behavior, I am not putting my money on it.

Last for now, Louis and I went to see a private school on Weds after which he clearly expressed that he liked his school and did not want to change. I saw no substantive difference either, only window dressing. So, halellujah, 10K$/year saved!! As for Giac, I took him out of school after the swine flu outbreak. Maybe overreactive, just didn't want to take any needless chances after the 22 month old with "underlying health conditions" died in TX. Also, though not a done deal, he may have a spot in a "reverse mainstream" pre-K4 class next year at a public Montessori school. It would be 12 kids, half regular ed and half minimally involved special ed, with a teacher and 2 teaching assistants. It could be a welcome relief to our ongoing backflips to balance Andre's and my work (both of which have been part-time since early fall) and Giac's need for extra care (esp re: feeding). I am cautiously optimistic. Keep your fingers crossed.

Same old same old

2009-04-24T14:30:00.002-05:00

Nothing new to report, really. The battle against allergies, asthma, ear infections and appetite drags on. Oue pediatrician has referred Giac to an ENT (for ear tubes) and an allergist/immunologist (for asthma). Won't see either until May and June, but at least it's in the pipeline. I would have gotten ear tubes long ago if it didn't require general anesthesia. I'm averse to anesthesia in LA since it is how he had a stroke in 2005 (they dropped his blood pressure). With ear tubes, we could treat ear infections at the source and not suffer the side effects of oral antibiotics (nausea, loss of appetite). And if we could ever get his allergies/asthma under control, well then he could possible live a halfway normal child's life. Until then, we've started on a couple of new allergy meds and done a blood draw for testing having to do with allergies/immune system.

Louis is doing fine. Looking very much forward to the end of school and his 7th birthday. I could be happier with his (public) school and am considering private school alternatives, but they are SO expensive and there is no way to know if it will be better. I am tempted to wait another year, so we can pay off our house note first. $1k a month per kid for school is just a LOT of money.

Andre's garden is doing well. He's done a little work on the cabin windows and is looking forward to shrimp season's bounty.

I am still bike riding alot (did my first metric century (62 miles) last weekend and will do another this Sunday). I am not so much looking forward to summer when it will become harder to work at home because of the kids' distraction, and harder to keep up my exercise which I have been doing while they were both at school a couple of mornings a week. There are a few summer camp type things, but mostly they will be here. Wish me luck.

Naptime, don't go!

2009-04-05T21:38:00.002-05:00

Giac is slowly growing out of his afternoon nap, and I am missing it already. It was such a peaceful time. Oh well.

Giac's health is pretty much the same as the last post -- a new round of antibiotics for an ear/sinus infection (started this past Tuesday 3/31). Asthma not as bad this weekend, but then he has been under virtual lockdown all week. The blog title I thought of but never wrote was "Wicked Buzzkill Witch," which is what I felt like for refusing to let him go outside even when he begged and protested. I would love to be more permissive, but even a half hour outside this time of year is a sure asthma trigger. Within hours there is a wheeze and/or cough that takes 2-3 nebulizer treatments over a day to get rid of. Feeling so frustrated by this, I went so far as to order a special allergy mask that he could go outside and not have the pollen flood his lungs. It came in Friday and he wore it willingly just to get outside. It appears to work well bc he was out for 2 hours with it yesterday and had no asthma flare follow. Seems absurd to have to do, but the consequences are real and are a pain for him and his medical managers (mostly me) to deal with. Soon, the pollen will calm down and maybe give the asthma a rest. Either way, we are restarting his preventive daily antibiotic dose bc I have had it with the ear/sinus infections. He's had 4-5 this allergy season (September-April), and only bc it was the first year in the past 3 that we didn't do the preventive regimen. I know his doctor was hoping he had outgrown this and so taken him off, but next year I think I will ask that he be on it again.

Other than that, just waiting for Easter (mostly Louis) and the week off from school (all Louis). Andre is still working over the yard/garden. I've been working alot (mostly prep for and delivery of a 4-day conference I put on last week), and otherwise swimming and bike riding. Did a 45 mile ride on Sat with a couple of friends and got a not so nice sunburn, reminding me it's time for sunscreen again. All in all, happy to have just regular stuff to report.

Nice Week

2009-03-21T19:20:00.002-06:00

Another turn at a medically uneventful week. Giac has settled down. He's had good energy and appetite. Not too high, not too low. He "graduated" from weekly physical therapy to biweekly on the basis of good progress. We'll be working on skipping next, his next gross developemental milestone. His asthma is seeming a little better controlled. Dr. Howes upped his maintenance anti-inflamatory and with that he's been able to spend more time outside. We did push it Weds am with a trip to the park -- air full of pollen, windy and lawn mowers at every turn. He was visibly more agile (thanks to the physical therapy, I am sure) but went from active to slumped in his stroller after 2 hours outside. A couple of breathing treatments later that day, and he was back to normal. Same thing today, he went fishing with Andre and my dad, and came back with a cough, followed by breathing treatment and running all about again. So, that kind of within the day rebound is great. Before, it always snowballed. Maybe the medication change will make these improvements last. Too early to tell, but I am hopeful.

Louis has been doing better at school. We put a new incentive system in place (Legos for good behavior, basically) and that seems to have focused him. I did see the pediatrician about medication for depression before we went to AZ, but decided to do more research. I spoke to the psychologist again and opted for a referral to a child psychiatrist for a second opinion. We probably won't see her for a month or more, and in the meantime we'll just keep an eye on things and hope it's as simple as the right carrot. Big picture, it's hard to get too excited when his report cards comes home with A's and E's in all subjects and conduct and reading at the 2nd grade level since before the winter holiday. I'm not foolish enough to confuse academic performance with happiness, but at least school is under control.

Andre continues to take small steps toward realizing his vision for a Pecan Island camp. Last week he drove to Belle Chase to buy fruit trees and this weekend went down to "the Island" to plant them. He's also been hard at work on a spring garden here, for weeks clearing and prepping the beds for new crops, including tender cultivation of a crop of exotic hot pepper and basil seedlings using grow lights and heat mat in the kids' playroom. The chickens still have run of the garden, pecking to death the last remaining fall planting (collards). But once the baby plants go outside, those chickens will banished from the garden until the summer crops are spent. Oh, which reminds me, no baby chicks yet. I pushed the order back to mid-May, both because we were not prepared for them yet and because it will be easier to care for them when the weather is warmer -- and more fun to get them when the kids are out of school too. And until my new babies arrive, I plan to spend my spare time getting more bike riding in, working my way up to the 50 mile ride I signed up for in May.

Spring

2009-03-13T21:21:00.003-06:00

For Giac, early March was a repeat of early February. Allergies/asthma/sinus & ear infection (last month the left ear, this month the right). In February, 1 round of antibiotics and oral steroids. In March, 1.5 rounds of both. Good news is the meds turned him round again. Quite a contrast between sick and well for him, extremes of energy and appetite. Which brings us to the subject of eating, which the steroids have officially taken to binge levels. Insatiable would be a gross understatement. He just begged out of bed to eat a bowl of pasta and pesto at 10:15 p.m. It also makes it seriously retain fluids. Little face is as puffed up as it can be. Only time it's worse is when he's flooded with IV fluids and/or after a heart surgery. I won't even bother to weigh him to see how he compares to a week or so ago when his weight was really down. I know from experience it'll be up an easy 2 pounds. Will have to wait a week or so til the steroids are out of his system to check up on that. And so the see-saw goes...

As for me, it was a really good week. I was in Atlanta for work (training) Monday thru Thursday. I've been venturing out much more this year, personally and professionally. I attribute the change to the meds I started taking in the fall. They have really lifted the dark clouds of recent years, given me stable footing, and enabled me to step up and out again. I was never a proponent of better living through chemistry, but then again that was when I didn't need it. These days I am a big believer in psychopharmacology. Six years of higher education (BA and MPA) don't hold a candle to life's lessons. Simply living can really change your understanding of things.

Note(s) to Self

2009-03-02T12:17:00.004-06:00

Do not focus on being GT-free so much as to lose sight of the need for frequent weight checks (I learned this morning that Giac lost 2 pounds since I last checked some months ago).

Do not take him off the appetite stimulant that the feeding specialty clinic recommended he stay on permanently (We did that about a month ago).

Do not assume that just because Giac is out-eating his brother that he is getting enough calories to maintain his weight and grow (We have always been told that he might not be able to make it tube-free no matter how well he eats because on the inefficiency of his heart and related high calorie intake demands).

Do not fret about it (The blender is always there for GT supplements to his oral feeds).

Do feel good abt the fact that you aren't fretting, but rather simply adjusting to meet his needs. No knee-jerk fatalism to a minor set back? Now, that's progress!