Tuesday, September 13, 2011

Hope. It's what sustained us.

So much to be thankful for, while still obstacles to overcome. That's the way of life, isn't it? Just as soon as one hurdle is crossed, there's at least one more - but, luckily, not all hurdles are big ones. Some, truly, are merely just a bump in the road and, in as little as a couple of months, we won't even remember them as a hurdle at all. :-)

This is what happens when I blog in the middle of the night, when I can't sleep, when I can hear the breathing of those around me. Soft, slow, content, well. All very good things. Though "well" has taken a while to get here, I'm starting to get comfortable with it again and am just so very grateful that it has crossed our doorstep and taken up residence with us again.

My daughter is in school again. I was beginning to wonder if it would happen, but it has. Of course, since there are no absolutes in life, just today the teachers decided to strike and tomorrow, though we've worked long and hard to get her back at school - where she hasn't been since late last September 2010, nearly an entire year - she won't be in school because school won't be open. Oh, hum, see what I mean about hurdles?

This, then, is the hurdle I expect to be one I forget soon. I expect the school district to recognize their mistake and quit trying to force the teachers' hands, as well as the parents', and provide a more sound evaluation plan, one that doesn't have all the teachers worried about their jobs. Time will tell, but in the end, school will resume at some point and all that matters is that my daughter will be there.

For those of you out there working through the early throes of a fructose malabsorption diagnosis, know this: Trust in hope. My 13-year-old has taught me this. Hope. She has spent her time this year focused on hope. Her hope is that she will miraculously be cured - a not likely scenario - while my hope has been on working her diet into something manageable that will make her feel well every day. But each and every one of the days in this last year she has repeated it to me over and again: Hope, Mom, it's all I have. If I have no hope, than what do I have?

Hope sustained her, hope saw her through to today, a day when we don't worry all day about what the night will bring. Nights which invariably began with us wondering if her stomach would start to gurgle around 8 o'clock, as it did so many nights. Would that gurgling begin to get louder and start to cause her pain? Would she begin to burp nearly uncontrollably and then, again, would the burping cause nausea which would keep us up and down all night with the bucket wrapped in her slim little arms? But, mostly, would the pain be so much that she would have tears in her eyes for hours, that the only thing that could comfort her would be slow, repetitive, but very slight hand movements across her tense belly? Though even the touch of her mother's hands couldn't keep the nausea from its final goal.

Hope finds us today having grown nearly two inches in the last four months, having gained - finally! - eight pounds from our starting weight last year, but really it's fifteen pounds up from the weight she got down to at the worst of it. Up and down went her weight, while the doctor's chart continued to show a drop every time which reminded me of the economic downturn charts. She'd put on a half inch, gain a pound, but the chart would show her as losing because one pound wasn't even enough to maintain her growth. Then the next time she'd lose two pounds. There's a distinct upward turn now in her chart, and I am more excited about it than any other chart I've seen!

Looking back now at all that went on in the last year, I can see what really went on pretty clearly. She developed undiagnosed fructose malabsorption, ate too much sugar at the fair, got sick from that. Under doctor's orders for the next six weeks we gave her the obvious treatments for a child with continual diarrhea: gatorade, popsicles, etc., anything to keep her hydrated. All of which perpetuated the problem, with us unknowing. Added in treatment for acid reflux, which they had treated her for before, as they thought that was the problem. Eliminated tomato-based products, anything that causes reflux. Followed this with all kinds of tests, including a colonoscopy and endoscopy, to no avail. The last and final test for fructose malabsorption seemed so innocuous to me, I was certain it was a joke.

By the time the diagnosis came in, just before Thanksgiving, there wasn't even time to meet with the doctor or dietitian to discuss what it meant and what she should eat for the holiday. And she had by that time been severely ill for a solid two months.

Treatment then for SIBO, which of course didn't help with the diarrhea, but with the changes in her diet began to heal her. Healing took months. Really. Months. Combine the need for healing with our trouble understanding the fructose malabsorption diet and anyone who's been there will understand. Now looking back again, as I've done before, it's really much more clear. We were working so hard to get it right, which was good, but time was the factor over which we had no control. Time was needed to give her system the opportunity to heal.

Thank God for the person who posted on my blog about the Australian Yahoo group (Bernadette! You came like a ghost in the night, there's no postings on your blog and I haven't heard from you again, but if you're out there, you were the angel that pointed me in the right direction - thank you!). So many things there are to learn with FM and it takes so much time to get it right. Without the insight from that group, I know it would have taken me so much longer. I bought all the right books, but really, there's nothing better than the everyday reading, listening, interacting with a blog such as this to keep you headed in the right direction. I can't say enough good things about that group. Or about Bernadette. :-)

So many things to be grateful for: Our school counselor, who has set her up with a schedule that has her in classes with her friends; three separate tutors, who kept her on-track with her schoolwork so that she could re-enter school after a year without a hiccup; our GI doctor, whose good humor and compassion kept me sane - and gave my daughter a laugh now and again; our dietitians, who go so unrecognized so many times, but who gave us the tangible tools we needed to reach success; our family in town, who continued to treat my daughter like she was whole, normal, even when she felt like such an anomaly; my brother and his family out of town, who made her ultimate Disneyland vacation the best, just now a month ago, and from which she came back happy, tanned and full of the vigor she had been missing; my friends, who gave me much-needed time away and allowed me to talk - at length! - when I needed to; my work family, who listened to so much and supported me all year as I came and went for so many appointments, and while I worked at home when things were at their worst; our personal family counselor who has continued to point both of us in the right direction, while giving us a safe place to share our deepest, most sad secrets; my best friend, who spent innumerable hours researching the diagnosis and who, with her wonderful scientific mind and culinary talents, not only created the birthday cake my daughter requested (the only thing she wanted for her birthday), but who also encouraged my daughter to try new things, which has given us some solid good meal choices that she now loves, and provided many nights of card-playing entertainment; and last, but definitely not the least, a person (and her family) who I continue to call our "daycare," though this term does not describe her in the least and my daughter is too old for daycare: you are the person who has most helped us to achieve our goals, who has supported us and kept us warm and safe, for whom my tears flow in gratitude, who kept everything on track even as I wavered, who always managed to share her thoughts without judgment, and even still with concern and care, you are the person who kept me sane and my daughter in a loving place, and you are the reason I know God exists, as he brought us to you so long ago and has kept us there, in the most wonderful home and the perfect place for my daughter - and myself. 

For each and all of these wonderful people, even as I write this I cry tears of thankfulness that you have been in our lives this past year. If my life were a stool upon which I was sitting on top, you have been the legs that have supported me - oh, so many legs - but without even just one of you, I'm certain we wouldn't have made it to here without toppling. Thank you, thank you, thank you.

Hope. Keep it. Nurture it. Love it. It will surely return to you a hundred-fold.

Saturday, April 2, 2011

Slow train coming...

Wow, more than two months since my last post and still we're not in school. She feels better, she feels worse - I'm reminded of the flower petal game we played as kids. He loves me, he loves me not. I just know we're going to land on the petal that assures "she feels better" any day now. :-)

I don't want this to sound bad, we have had success. We continue to learn and we continue to make missteps - most times we don't even know what went wrong. The last time it was either: the taco salad she had at daycare (she loved it!), the two bites of five-ingredient ice cream, or - shoot, I can't remember the other item, but suffice it to say many times we're never really sure where we messed up. They've added a single wheat back to her diet daily, put her on a probiotic, and are giving her extra vitamins. Plus the nightly Miralax treatment. She's gained two pounds! That's huge since she initially lost a little more than eight, which really is 10 percent of her body weight.

As a Christmas gift I enrolled her in ice skating classes - she was thrilled! But it was apparent at the first class, all of the other kids were not really beginners. She was embarrassed, they were spending all of their time waiting for her (she was at least twice as slow as everyone else). I felt bad, too, this was supposed to be fun. The arena allowed us to apply the rest of the class money to private lessons and now she is having fun. We have a lesson this morning and we're trying to go at least one other night a week. Exercise and fun, all rolled into one! She doesn't even know that it's helping her, it's so wonderful to see. And so far I haven't hurt myself, so that's a positive...

Spring break ends this weekend, the school's given her more tutoring time and are testing her for a 504 plan. I don't even know if this is the right thing to do, but if I can't get her back in school regularly, this is what will prevent us from the Becca Bill going into effect. Truly, while she's sleeping I can hear what's going on in her stomach and it sounds painful. On bad nights, even while she's sleeping she moans and groans and wriggles as though in pain. Last night was a good night, she slept all the way through, but even as I look at her, I see the pale color to her face, the just-there sallow eyes. She breaks my heart!

But it is getting better and I'm moving toward that. She's requesting her smoothies now, she's making right choices on her own, and occasionally I see the light in her eyes again. At her most recent appointment, her counselor noted that the young girl she had seen that day was almost a different young girl than had originally come to her - there was a bit of the bubbly back in her. That young girl is showing up again more often now and we are, oh, so glad to see her!

I'm waiting for now while she sleeps, but once she opens her eyes, I'm going to give that young girl a morning hug - give yours a hug, too!

Monday, January 17, 2011

Online love!

After my last post, I did spend a bit of time out online looking for support for my daughter’s new-found fructose malabsorption condition – and success! Not, of course, due to my own abilities in online searching – I consider myself good, but I’m not that good – but instead I had someone read my post and point me in the direction of a group out of Australia. Thank you, Bernadette!

So now you’re reading the blog of a new member of two different fructose groups, as well as a knitting/crocheting group! Who says you can’t do it all? :-)

There’s so much info in the group sites, I know it’s going to take some time to absorb it all (pun intended!), but hope is newfound and for that I am extremely grateful. While I plan to stay on the straight path for the moment, the one with very little messing around in the fructose/glucose matching up, where we try to stay fructose-free except for specific planned excursions and mostly on Friday nights, I know that I am on the road to being educated in this new world we find ourselves in. Yay!

Since my daughter’s onset at the end of September, she’s been in school exactly 1-1/2 days. I hope that tomorrow we finally put an end to that. She got better over Christmas, only to get worse again, but having just performed the underhanded cleanout maneuver (she hates this!) and removing gluten from her diet, certainly we expect her to continue her onward move to a mostly pain-free stomach.

She slept last night, nearly all the night through, and that’s the best sign I’ve had in a long time. Of course, since I’m used to being up and down with her all night, I was up a couple of times, but we can get past this. We can rediscover that night-time is sleep-time!

Here’s to all of you who take sleeping for granted – don’t! Enjoy it! Make it an event! Buy some lavender spray for your pillow, have a nice green tea with honey, lay back with a single chapter of a book, and once you turn off your light: SLEEP! And be grateful…

Saturday, January 15, 2011

Two steps forward…

It’s been more than a month since our fructose malabsorption diagnosis – and while we’ve had some success, we’ve also had some recent difficulty. Our initial wonderful turnaround has been followed by a couple of weeks of questions and more questions. Again, hindsight is a wonderful thing, because during this time it did seem like the foods I had bought contained sugar though I didn’t think they did, while really it’s more likely that her system was backing up and that was causing our issues.

Needless to say, right now she’s asleep next to me on the couch. Her stomach is a little better, she’s a bit more comfortable, but we’re back to a completely basic diet and have eliminated gluten for now. If she’s not better by Monday, the doctor wants to take a look – she may have again developed a bacterial growth and antibiotics may be in order.

I’m just so concerned that she’s losing more weight, but haven’t brought out the scale because I don’t want to alarm her. Our last visit showed she had dropped below 80 pounds, she’s just under 5 foot, and had lost about eight pounds total, so close to ten percent of her body weight really. While we have found a couple of foods that eased her sugar/snack/dessert cravings (diet Jello pudding  and Pirate’s Booty!), neither one of them will fatten her up. Sad smile

If anyone has any ideas for gluten/sugarfree (including HCFS, etc.) desserts or high-calorie meals, I’d love to hear them! Our nutritionist is helpful with what not to eat, but doesn’t have a lot of information in this regard. I’m off now to research “fructose malabsorption” support groups. Wish me luck!!!