Gastroenterology

That's a mouthful, huh? And why is it called GI for short? Where's the I?! I'm assuming it's for intestinal? Anyway...

The doctor was great. Carver actually spit up a little in the office and I was able to show him before I wiped him clean. Just the classic white curdles. I felt like the doctor took us seriously, considered the implications of SPD and make an accurate diagnosis.

It's not what I wanted to hear.

It's called "rumination" and it's a VOLUNTARY regurgitation, a habit or nervous twitch in the stomach that forces food back up. I've googled it and it fits Carver perfectly. It's more common in infants and children with developmental delays/disorders, it's (sadly) often linked with a lack of attachment or the absence of a mother. But we're not going to dwell on that part because it's not our situation, right?

Carver's tendency to eat quickly and not chew well lets the food sit in his stomach longer, making it easy to regurgitate. We'll work on those as best we can.

Another recommendation was to use bio feedback, which is more a psychology technique that builds association with the habit until you can use that association to control and eliminate the habit. For example, singing the ABC song is something other families have done with each regurgitation. I'd be singing it continuously sometimes. He suggested a toy that makes noise, essentially a distraction that will take attention from the behavior and eventually replace it. I get the concept, I'm just not sure how we're going to do that exactly. He recommended a child psychologist for more help. Sometimes anxiety/anti depressants help, but he doesn't recommend that. Thank goodness!

Speaking of medication, he'll stay on his Zantac indefinitely. It doesn't help the rumination, but it will control the acid and prevent damage to his esophagus, teeth, etc... Carver doesn't mind taking it, it doesn't have negative side effects. The dose was right, so we'll be refilling that somewhere cheaper than Bartell's and trying harder not to forget.

The doctor also said that there was a 5% chance there was something else involved and said we could elect to do an endoscopy (en-DAH-scuh-pee). I still have to repeat it in my head a couple times to say it right. Anyway, it's the procedure where they send a camera inside, take pictures, biopsies and rule out any other medical, physical problem. Allergies, hernias, ulcers, etc... It's done with general anesthesia at the Children's Hospital in Seattle. We've been there with ear tubes and it's a very similar experience. It'll be half a day at the hospital for a 10 minute procedure. He couldn't recommend it necessarily and left it totally up to us. His nurse told me after he left that he's very straight forward and would've said one way or the other if it mattered to him. I liked knowing that, but I still wished he'd just decide. Then I thought about my last post and how much I believe in mothers knowing what's best for their children. And I suppose I'm grateful to be involved and respected in Carver's healthcare.

I worried and thought and second guessed all the way home. And I prayed - a LOT. I've been fasting and praying to know what to do, to get answers and to be able to help Carver. I worry a little about the anesthesia because I can't help it. But in the end, I really feel like it is a good idea to go ahead and do the endoscopy. We might not find anything, but that alone would give me the energy and focus to move forward on the rumination with no question in my mind that there might be more to it. I'm pretty sure I don't WANT to find anything else. That would just make everything more complicated.

The endoscopy is Monday morning, bright and early. I haven't gotten all the instructions yet, but I know for sure that he's not eating anything after 7 pm the night before. And I think he's on a smoothie diet the 12 hours before that. It's a good thing he likes that sort of thing, but I still anticipate a rather grumpy day.

I think we'll know some results right away, but the biopsy results will take longer and will be discussed in another office visit. I feel tired thinking of another long-term condition to overcome, but I am so grateful to KNOW. It's where everything has to start. Now I just need to focus on HOPE in the future and the courage to keep heading that direction.

Lesson #4: Mother knows best

Next week Carver will see a pediatric gastroenterologist at Children's Hospital to get to the bottom of his regurgitation. He's been "spitting up" continually since he was an infant. It was curdly milk for a while, lately it's been more acidic. I'll spare you too many details, but his chin is raw from the drool and occasionally has just terrible breath. He has also been addicted to milk/cheese/yogurt his whole life - which I think is his way to soothe his stomach. Doctors have REPEATEDLY blown me off - many different doctors. Last time she assured me that reflux would hurt, that the main symptom is stomach upset. Well, Carver's not going to be able to communicate that to me even if he realized that his stomach hurt - and I'm not sure he'd know. So I finally decided that as his mother, it's time to refer myself to a specialist. Of course, I called and made that oh-so-helpful pediatrician do the paperwork. I've talked to friends in the medical field and got some invaluable tips about other possibilities, procedures and ideas. I'm determined to see this through. If it means I break down and cry to the GI doctor next week, I'm not leaving without a plan.

It's not easy to work through referrals at this hospital, it's intimidating to go there without a full knowledge of the specialty, but I've done my research and I'm taking a list of symptoms and observations of Carver. The last mediocre doctor gave me a prescription (generic Zantac) to try and it's possibly helped the acidity of the regurgitation, but not the frequency. And I still don't feel comfortable blindly medicating what could be a more physical problem. I'll keep you posted.

I kick myself for not pushing the issue sooner, but I think I had my hands full with the rest of the sensory issues and now I've reached a plateau where I can tackle another set of problems. It reminds me of what I learned the first time around. When you know as a mother that something is wrong, you don't give up until you get the help your child needs. No good doctor should dismiss this motherly intuition, but so many do!! I just don't get that. Don't ever back down when you think something is wrong -with your child or yourself. It's worth pushing for answers!

Lesson #3: Love

Awhile back, I was talking to another mom who confessed that she'd always been worried about having a special needs child because she was afraid she wouldn't love them the same. I really appreciated her honesty and the positive context of our conversation. It brought this lesson into focus for me.

When Carver was born.... no, before he was born... I loved him. I loved him because he was mine, because our lives are intertwined from the beginning and connected forever. When he was born, I got to meet this little guy I already loved and it just grew from there. Now, my experience with Carver isn't the same as someone who knows during pregnancy that their unborn baby has disabilities. I can't pretend to know what that's like. But I have to imagine that you still had time to love them first. That, for most of us, we wanted to be pregnant and we wanted that baby. That is where the love all starts. So no matter what happened, what disappointments were in store, we began with love.

It's a very emotional journey to diagnose disabilities like Carver's. I felt a lot of worry at first, those typical comparisons, some jealousy of other mom's little boys, fear of the future. I had to put all that on the table to get him evaluated, to be ready to face hard things. But I loved him too much NOT to. I wanted him to have help and I needed it, too.

It's a different kind of love to care for Carver than for my girls. I feel more frustrated, more impatient and more inadequate as Carver's mom - absolutely! I don't love him LESS for those feelings. I also feel more protective, more invested, and more sure that he needs me. It creates a different kind of love. A fiercer emotion, perhaps. But I know for sure that it isn't more/less than the other sorts of mother-love I feel for my girls.

I love that quote I just put on the sidebar:

“When I approach a child, he inspires in me two sentiments; tenderness for what he is, and respect for what he may become."

That is just beautiful to me! And it's so true for children with disabilities. I love Carver for what he is now, for how far he's come and for all that he teaches me right now. And I certainly hope for his future and what he will become. I'm so grateful for other people that love him, too - his bus drivers, his preschool teachers, therapists, his sweet little friends and mine.

I love his smile, how he dunks his head in the pool, how excited he gets about simple things, how he's starting to fill in words to songs I've sung him again and again, how he snuggles in bed with me, the way he jumps and runs, the way he hugs me and wants to be with me. I love him fiercely, always have and always will.

And you know what? Having Carver has taught me to love on a new level. Those kids on his preschool bus have such a special place in my heart. I want to know their names and their stories and I'm just cheering for them because I know that they have challenges just like Carver. When one little boy started telling me all about the bus stop sign he could see out his window, I didn't understand a single word he said but I knew what he meant. And I loved him for telling me about it. It's easy to see the innocent in children with special needs, but I think that what really happens is that loving them purifies US.

Just for fun

Doesn't Carver have the coolest bus driver? She lets him pretend to drive the bus when they have an extra minute at school. This particular morning, they were running early and let me take pictures of it. Carver LOVES vehicles and the bus was his favorite part of school for a long time. :)

I love this one. My view every morning as my little man heads to school. Awww....

Oh, dear

Tonight Derek came home and as I hugged him, noticed a funny smell. "Have you been painting your nails on the way home from work?" I teased. Then it clicked - it was coming from upstairs. DANG IT!!! I ran up to the computer desk where I remembered instantly I'd left my tightly shut Nail Envy.

Serves me right for not putting back in the bathroom cupboard, but Carver opened it up and let it leak on the carpet, drip on the computer keyboard in a few places (the "zx" is what you get if you press Z and the TAB feels a little weird, too) and he must have wiped some on his hair because there is a VERY crusty streak over his ear. Someday, someday, SOMEDAY he's going to stop doing stuff like this and I'll look back and think it's funny, right?

Today I overheard one mom tell another mom about the difficult girl on her daughter's softball team - a group of 3rd graders. She described the way she never paid attention to the game, how she wrote in the dirt, made mud and played in it, couldn't follow directions. She head butted other girls when they were in their batting helmets, etc... Her main complaint was that it was an annoyance to the team, she couldn't believe that this girl's mom didn't intervene. From her perspective, the mom didn't seem to notice a bit. She commented that she must be a "nightmare" in the classroom. She said, with a mixed degree of relief and smugness, that next year the team is based on skill and she's sure THAT girl won't be moving up.

I kept quiet. I didn't know what to say. But inside, I had plenty of things to say to myself.

First of all, this girl needs help. I hope that her mother really isn't as oblivious as observed. Those behaviors are obviously NOT typical of 3rd graders. Life is going to keep getting more difficult, I am a huge believer in early intervention. I hurt for her, thinking of the many who watch her on the field and don't understand. I hurt for the mother they blame.

I've considered the dilemma of group sports for these very reasons. Swimming would be incredibly therapeutic for Carver, but a group lesson situation would be... um, difficult. He'd have a hard time following directions, need more attention than other kids and their parents would be resentful. How would I feel in a similar situation? Like I'd paid a lot for a class and expected to have equal attention from a teacher. Private lessons would be ideal, but terribly expensive and out of the question for us right now. Soccer? He'd love a turn to play, but again the interactions would be stressful to him, it would be so hard. But on the other hand, when he's ready, a team experience would be wonderful for him, physical activity tremendously helpful.

I realize not everyone has first hand experience with developmental delays and disabilities. They don't understand the balance between concern for everyone else's convenience and our children's need for integration and experience. I get that. I am incredibly grateful that my girls will have understanding of disabilities and, hopefully, grow up with compassion for others around them. It's certainly difficult to have Carver as a brother and they aren't usually saintly about it. But I hope that as they mature, what'll stay with them is that they love him anyway and that they are willing to be on his team and anyone else's who needs a cheering section.

The Black Mamba

Monday night our family attended "The Reptile Man" show at the elementary school. $2 a person and we saw load of creepy reptiles, not the least of which was the infamous Black Mamba snake of Africa. It's a grey, long skinny snake with a black mouth. It gets to be 15 feet long, slithers 10 mph and kills 9/10 victims. The Reptile Man said that when they feed the males (who are much more aggressive than the females), they drop a mouse in and the snakes can bite the mouse TWICE before the mouse even reaches the floor of the cage. Is that scary or what?!! All around a friendly sort of animal. I'd show you a picture, (I even found one online), but I hate snakes. It totally creeped me out. I can't see an close-up of my least favorite creature on my little boy's blog!

So Mr. Reptile teases the crowd by pretending to lose control of this vicious predator and sends two black fabric springy things FLYING into the audience. Carver was nervous about the whole of snakes to begin with, but he'd been doing okay once we got there. It was crowded and we were at the very back, holding him up to see. Thankfully, he was only startled when the pretend snakes jumped out. I was so proud of him not getting freaked out by anything that night, despite the crowds and all the big reptiles.

The truly funny part is that when the real Black Mamba came out, Carver put his hands up to his neck and goes, "awwww" - the sound he makes for holding babies and little kittens and things. We were laughing so hard. I didn't want to forget, but we probably won't. We keep quoting him and saying, "awww, the little Black Mamba." Even after his apparent affection for venemous snakes, he wasn't interested in staying to touch the big albino python with the girls. Not that I blame him a bit!