Black and Gold to the Superbowl!

Saints euphoria is the only way to describe it. And it is FUN!

Happy Birthday to Me

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

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

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.