July 31, 2009

One bike, two bike, pink bike, blue bike

Quick post:

Hannah dreaded going to bike camp on Thursday. I dreaded going to bike camp on Thursday. She was sure she was going to crash. I was sure she was going to crash. She was slated to ride outside in the parking lot. 94 degrees and 90% humidity. Sunshine.

My plan for her to survive:

Give her Rescue Remedy (homeopathic remedy for stress or injury--emotional or bodily).
See if the director of the camp would let her ride a smaller bike (a big no-no with Lose the Training Wheels-LTTW).
Wear protective gear.
Drink lots of ice water.

What happened:

Hannah happily took her "Bravery medicine". The previous night, the director had discussed Hannah with some top LTTW recreational therapists and their idea was the same as mine. Yay! Hannah warmed up (so to speak...the gym is air conditioned) on the smaller 20" LTTW bike. She really liked it. She kept saying, "It's not so bad! It's not so bad!" The director is a mechanical engineer, so he monitored her movements and reactions on the small bike.

We went outside to try her big bike one more time (the gym had more kids/riders in it). I rode a bike in front of her, so she could chase me. She did okay, but still couldn't keep her speed up to ride steadily. We tried a few other variations, with me running her bike, her volunteer running in front of her, etc. Everyone was so hot!

After 20 minutes we went back inside. James planned to come for the last 30 minutes to give Hannah a morale boost, so we were just getting cooled down when he came.

Back on the small bike, Hannah did great. She barely needed any re-direction (the handle on the back of the bike can be touched lightly to straighten out). And the clincher was that she started telling jokes to the "audience" as she passed the bleachers. We hadn't heard a joke in 2 days!

Now we're in the market for a smaller bike. With forward pedals and high handlebars (doesn't exist, except at LTTW). And this time, no 75% discount. We'll keep her bigger bike until she's a stronger rider.

I am really happy that she didn't quit! So is she! We still will have to work daily to perfect her skills, but I'm feeling like it's manageable.

July 29, 2009

One post, two post, red post, blue post

I'm sorry I've been AWOL for a while! We've had a whirlwind of revolving houseguests and activities that have kept me from getting much of anything done other than wash sheets, cook and drive around.

Here is the run down of the successes of the past 10 days or so:

IEP Mediation: I went to Macey's mediation and pretty much kicked butt. It took a lot of arguing, but finally, after a few calls to the VA State DOE to clarify the law regarding age of compulsory schooling, Macey will be able to attend an extra year of inclusive preschool at her local elementary school. The school system was trying to force her into Kindergarten and she is just plain not ready for that. (Background story: Macey was adopted from Ukraine almost two years ago and is doing her best to catch-up, but it's hard when you have Down syndrome and significant hearing loss.)

Chris and High School Graduation: My parents came to visit over the weekend and we took the opportunity to finally celebrate Christian's graduation. A delicious (and I mean DELICIOUS) meal at Ruth's Chris Steakhouse was lots of fun. The graduation included a lovely presentation of a crayon-made diploma, a song, and no wild dancing. Toasts, humorous stories and huge desserts filled out the evening.

AnnaJoy: A newly minted American, AnnaJoy was recently adopted by dear friends of ours. They have been living in China for several years and have come home to finalize AnnaJoy's adoption and have some respite from their work in China. They traveled from Oklahoma to visit, and we were all thrilled to meet this spunky three-year old!

Chris and College: He has his roommate information, and is in one of his first choice dorms! We went to the campus last week and ironed out some things at the Registrar's office, and now he is officially an academic Junior (though still a social Freshman). Now the shopping begins! Only three weeks before launch!!

And a run down of the not-so-successes of the past 10 days:

Bike Camp Take 2: Soon after we returned from the Charlotte Lose The Training Wheels camp, we realized that there was going to be a session of the same camp here in Richmond. I signed her up after realizing that she still needed some "tweaking" with her balance and awareness of her surroundings. The first two days were great, but today she crashed a few times and is now not wanting anything to do with her bike or camp. I am wiped out from running and cajoling. She is SO close to becoming an independent rider, but she's scared to maintain the speed she needs to balance well, so she ends up fishtailing and loses control. The "professional opinion" is that if she cannot maintain a fast enough speed, she will not be able to ride independently. We'll try again tomorrow, with elbow and knee pads to help cushion the pavement. After that, we'll have to make a decision about whether to keep trying, or give her a different option for riding. We're not quitting. Through tears, Hannah says, "Bike riders never give up."

(If you missed the first version of bike camp, click here)
2, 548 shards of glass: A microburst storm lifted up our glass patio table and smashed it over our deck. Now we have to pick up all the pieces to save gentle paws. I've heard that a shopvac might help the clean up! I was wishing that glass was magnetic.

$5853.00: Cost of Hannah's orthodontics. This doesn't include the oral surgery she is having on Tuesday. We do love the doctor, but were hoping that an office without all the Playstations and computers would have been less expensive than the swanky Hug-o-rama office.

Still waiting: Kate has not heard much from the Peace Corps. Everything is fine, but it sure would be nice to know what kind of timeline to anticipate, and what preparations need to be made.

We've had no real disasters or disappointments, just regular ol' life, coming in above the regular speed limit.

July 24, 2009

Vitamins Take 2 (and call me in the morning)

I'm glad that many of you found my vitamin post to be of help (and, look! no mean people!). After nine years of managing and tweaking Hannah's supplements, I can still find myself wandering into a health food store or vitamin aisle and completely freeze in place--there are so many many choices--they all can't be all that necessary, right? I mean, humanity has actually survived for quite a while without the help of many of these nutrients, right? I understand your confusion and hesitation.
Years ago I didn't know where to start at all. I joined a very medical and metabolic focused Down syndrome listserv, sort of by accident. I was a lurker for many months. The moms on that list are amazing--they know so much, and continue to pursue all kinds of interesting approaches to solving some of Down syndrome's challenges. I didn't have the time or inclination to do all the research they do. I do actually spend some time reading current research. When I go to conventions, I usually seek out the more scientific and medical seminars. But I can't keep up with all of it. So I have to compromise, and just give some ideas a try. Nutrivene is about as mainstream as an alternative therapy can get. Does that make any sense? I'm trying to say that it's not like it's uncharted territory--there are thousands of families that are using Nutrivene or MSB (a similar Canadian brand of vitamin). It might seem way out there, far from what *most* families choose, but it isn't all that distant from a good quality vitamin.
I'm going to give some more specifics about ginkgo, since I've had quite a few questions about that. Then I'll go into more depth about the blood tests we use.
We use Ginkgold, and I usually buy it from Vitacost since it's usually cheaper than through Nutrivene. The Nutrivene site doesn't carry liquid Ginkgold, but it is available elsewhere. I know some people use the Ginkgold tablets and crush them for their little ones who can't take pills yet. The Ginkgold brand tablets are very hard, so you'd need a mortar and pestle to crush them. For dosage we use 2.5mg per pound of body weight. When I start a new supplement for Hannah, I always try it myself first, and then I'll give it to her, but only a half dose. I work up to the full dosage over the course of a couple weeks. With Ginkgo, the dosage seems to really vary according to the individual. Some people see differences at lower doses, some need more. The upper limit for adults is 240mg a day, which is what Hannah takes. I take 180mg, but I don't have an extra chromosome (don't forget, Hannah's a tall sturdy girl--nearly 100 lbs). Ginkgo does have the potential to mildly inhibit coagulation, so it is important to let your doctor/dentist know that your child is taking it.
With regard to blood tests, I began with the basic blood tests: Thyroid and CBC.

The CBC (complete blood count) is needed to monitor general health, plus screenings such as anemia and leukemia. Most doctors know that these labs need to be run annually. (Though I've had to train most of Hannah's doctors myself--they usually do not argue against blood labs, especially when I come in with a list.) Please note that the CBC is used for "screening", not for :diagnosing" a problem. It pretty much tells the doctor if s/he needs to look further.
Since we know that there are some known enzymes and elements that are typically low in the Down syndrome metabolism, we should test for these as well. Selenium and Zinc are two main culprits. Both of these are important to healthy thyroid production. If I want Hannah to maintain a healthy thyroid, I know that I need to keep an eye on her levels of Selenium and Zinc as well as the regular annual thyroid testing.
I know that iron can build up excessively in my child with Ds; I want to make sure that she has enough for her body to be healthy, but not too much that could compromise cell membranes and function (hello neurons? hello cardiac issues?). To do this, I need a lab test that shows how much iron she has in her blood, plus I need to know if she has enough of transferrin, which transports iron (Iron and TIBC-total iron-binding capacity). In addition, it would be helpful to know how much iron she has stored in her body. This is the ferritin lab.
Homocysteine is a tricky deal. Did you know that high homocysteine levels in mothers have been suspected of one of the potential causes of the sticky extra chromosome to begin with? That's not actually relevant to our kids, but an interesting knowledge point. With our kids, the issue is that homocysteine is usually low. This is because of trouble with folate and/or B12, which is caused by the extra chromosome.
If your doctor questions you about the labs, you can always ask them "why not?". If they have a good argument (for instance, Vitamin A is a questionable test. Yes, too much Vit A is a dangerous thing, but it is an extremely rare condition, and without any symptoms, the test is usually not needed). I've had doctors who have resisted the Vit A/Carotene test, and other doctors who have added it to the list once they know that we supplement.
I'm going to add a Vitamin D level to Hannah's annual labs as well. American kids are coming up short with regards to Vitamin D. They spend far less time outside, and their diets are not optimal. With Hannah's red hair, fair skin and copious amounts of sunscreen, she is at risk for not getting enough Vitamin D. (And I already have a kid who has Vit D/Calcium absorption problems.)

A doctor should never hesitate to test for celiac disease if the child has not yet had the the screening. This disease can be asymptomatic, or have unexpected symptoms, so it is prudent to have this done during the toddler/preschool years, and perhaps adolescence as well.

Other tips:
To learn to take pills, we used fish oil gelcaps that we punctured and squeezed out the oil. We used the empty "skin" and plopped it onto a spoonful of applesauce or yogurt. We told Hannah to "gulp" it down. Once that went smoothly, we added in larger empty capsules, and finally moved on to actual supplements.
Always always get a hard copy of all lab results! Keep a file folder with labs and other medical reports. It is likely that you will be the one that notices a trend one direction or another than the doctor would. And you'll have the results to help you remember what you need on the lab order then next year!
Costs: If you have Healthcare Savings Account, you could see if your doctor is willing to write a prescription for Nutrivene and other supplements. That way you could pay with your pre-tax dollars. Over the counter vitamins are covered if you have a prescription.
We keep a budget item line for vitamins. We set aside $50 a paycheck for Hannah's supplements. I order vitamins about every 2.5 months or so, so the money accumulates "hidden" in the checkbook until I use it. For younger or smaller children, the costs would be reduced accordingly. When Hannah was two, we probably paid about $100 for 3 months of supplements, about a dollar a day. Now we're up to ~$3.00/day, but we've added more items to her protocol.
Don't start more than one supplement at a time. Take that one (at full dosage) for at least 2 weeks before adding a new supplement. Try not to add something new when other new things are going on (such as the beginning of the school year, or immediately after surgery). This way you can identify any changes or reactions in your child.
Again, if you have questions or concerns, email me or leave a comment!

I've updated our supplements in this post.   October 17, 2012


Well, we do know that kids with Down syndrome have difficulty with abstract ideas. But Hannah is a regular Amelia Bedelia. She is so literal, so concrete.

Here are two examples from a finish-the-picture book she's been working on:

Sometimes I'd love to be inside her brain and really know what it's like in there! But we really have fun with what comes out of that brain.

July 21, 2009

We're home!

We had lots of fun at our family reunion! The train trip was great--relaxing and relatively quick. Amtrak on time? Who'd believe that??

Of course, Hannah spent a good amount of time studying the safety pamphlet on the train. Does anyone else have a kid who is nuts about safety? I think I need to get her one of those Orange Safety Patrol belts (just to complete the dork factor) (which she comes by naturally--all my kids are kind of geeky) (I type that in Loving-and-Proud font).

With 17 of us, ranging in age from 4-76 we divided and conquered a good portion of New York City.

Hannah's favorites included going to Central Park to see the pond where Stuart Little was on a sailboat and where Giselle (from the movie Enchanted) sang by the fountain.

She also like climbing the big rocks and seeing the Alice in Wonderland statues. Seeing the snow leopards at the zoo was great too!

Others of us went to the Museum of Natural History, the WTC site, a boat tour around Manhattan Island, The American Indian Museum, Starbucks, Joan of Arc in the Park and shopping in SoHo.

Hannah's best fun was playing with her cousins--her beloved Mary was right by her side the entire weekend!

We hope that it will be our turn to host next time...

July 16, 2009

Gone away....again!

We're off to New York City for a long weekend! It's family reunion time, and we're looking forward to seeing cousins, siblings, in-laws, aunts, uncles, etc. That sounds like a lot of people, but really it's just my immediate family-my brother+his family, my sister+her family, and my parents. We're taking the train for a little bit of a different adventure.

I have been working on a follow-up post about vitamins/supplements and lab tests, but I haven't quite finished it yet--next week!

Have a good weekend!

July 13, 2009

Hannah is Punny

Kate: Hannah, how do you say "slipper" in Chinese? (Hannah randomly told her how to say it last night.)

Hannah: Um. (silence--brain retrieving from archives....) Tuo xie!! (sounds like "twuh sheeyeh")

Kate: Oh, that's right! Does Molasses (Hannah's beloved Teddy) have slippers?

Hannah: No. (silence) He has bear-feet!!!

July 9, 2009

Targeted Nutritional Intervention--Vitamins

Skip this post now, or forever hold your peace.

No, really, I am open to any comments or questions about the topic of TNI, but please be respectful. Be assured that our family really has considered all angles of this subject. I certainly respect that other families make different choices and I never push nutritional supplements on to other families. I am writing because I have been asked about vitamin supplementation, not because I want to influence others' decisions.

The short explanation as to why and how we came to the decision to supplement Hannah is that we knew that the parts of the typical TNI protocol that we would use were safe; there were no medical dangers involved. And, we could afford it. We had no reason not to try it. The mainstream medical approach to T21 has not come up with anything to address the metabolic issues caused by the triplicated chromosome. It's true that there have been no scientific studies to prove or disprove the efficacy of any TNI protocol. And there won't be any in the foreseeable future.

I can't say one way or another that all the vitamins and supplements we've put into Hannah have had any effect--I'm not able to do a double-blind study on my kid. When we started with supplementation we were not looking for visible or measurable changes in her. We were hoping that her neuronal pathways would be healthier down the road, that her immune system would function a little better, and that perhaps she'd have less risk for Alzheimer's. Maybe we're throwing money away. It's a risk we're willing to take. So far science hasn't decided that Down syndrome is interesting enough or worthwhile enough to spend big research dollars on anything other than prenatal diagnostic tests. There are small studies that reveal metabolic deficiencies and disruptions, but not many studies that look at solutions to these problems.

The long answer:

For starters, we view Down syndrome as a progressive disorder--the extra 21st chromosome doesn't just show up once and make our kids slow learners--the extra chromosome is actively overproducing certain proteins and enzymes (all with long scientific names like cystathionine β-synthase). It isn't going to stop until we can turn off some of the genes on the extra 21st chromosome (which isn't going to happen for quite a while). This abundance of excess gene products is an ongoing, compounding issue in our kids' bodies and brains. There are too many cooks in the kitchen and too many leftover waste products cycling in our children's brains and bodies. These excess products are interfering with the endocrine system (thyroid, diabetes), immune system (celiac), and produce other biochemical abnormalities (leukemia, neurological issues). This is well documented in scientific literature (for an example, see here).

For a layman's overview to understand all this, you might want to read this from the Einstein site. (BTW, there is a picture of Hannah, age 3, on this page--on the left, second one from the top--wearing a crown.)

When Hannah was a toddler, some months after her heart surgery, Dr. Jill James (University of Arkansas) started a research study measuring how well certain nutrients were absorbed by the Ds metabolism. The specific nutrients were folic acid, trimethylglycine (TMG) and...umm...something else I can't recall right now. We signed Hannah up as a participant. They took pre-test blood labs, and then we started with the supplements. She had her blood tested at 3 months and then at 6 months. She was followed by her pediatrician through it all. None of the nutrients were anything dangerous, but they were at a higher level than the RDA. This was because there was a previous study that indicated that the RDA for these nutrients was not sufficient for the Ds metabolism. The study was to determine how much did the average person with Ds need to reach the "normalized" level of the typical population.

At this time, we had been in the Down syndrome game for almost three years, and I had read as much as I could. Being very active in our local Ds community I also got to reflect on the results of mainstream approaches to Down syndrome. To be frank, the available therapeutic interventions just were not cutting it by my standards. It was clear that the medical establishment was not interested in looking for methods to ameliorate the expression of the extra chromosome. Nobody seemed to want to spend money on our kids to do any double-blind studies to determine whether or not anti-oxidants or zinc supplementation would make a difference. Without such a study, no doctor worth his or her malpractice insurance could possibly risk suggesting using nutritional supplementation. (Well, there are a few out there, but Hannah's never been seen by one of them.)

When the six-month study ended, we could have stopped right there. But we had no reason to stop. Hannah was already on a pretty good course cognitively (pre-TNI). She was talking in sentences, had a sight word vocabulary of about 200 words, and knew her letters, shapes and colors. Our focus for her was on speech and cognition, two aspects that were going to make or break her as an adult. We weren't expecting that doses of vitamins, antioxidants and essential fatty acids (EFA) would change much. We were skeptical of anecdotes about facial structure changes, or miraculous leaps in development. We were in it for the long run.

We started with the whole Nutrivene package: Daily Supplement (microencapsulated powder), Daily enzymes, and the Nighttime formula. At that time we also used Evening Primrose Oil for EFAs. We quickly determined that Hannah did not need the enzymes. We also noticed that Hannah did not sleep as well if she had the NightTime formula. (The Night time formula is primarily to promote growth and regular sleep patterns. Hannah was already in the 75 percentile for height on the regular growth charts, so we didn't need more growth). So we dropped those. Over the years there has been some tweaking of what we give her. We've always viewed vitamins as a non-negotiable thing. When she was little, they did taste bad. We'd mix the powder with cinnamon applesauce or pureed fruit to hide the flavor. When she was four years old she started taking capsules, which made everything much easier. She still prefers to take the capsules and tablets with spoonfuls of applesauce, usually two or three capsules at a time.

The first addition we made was a probiotic. Now, this is one thing that I DO HIGHLY recommend for our kids, and for the rest of us. It's the first line of defense against constipation. Probiotics are healthy bacteria that reside in the GI tract. Many times, due to antibiotics (which indiscriminately kills all bacteria, helpful or harmful), a child gets diarrhea, which is frequently followed by constipation. Low motility in the GI tract also contributes to constipation. A probiotic powder or capsule will replenish the colonies of healthy bacteria that do the work of digestion. (This is what Activia yogurt is all about.) Later, we changed from Evening Primrose Oil to an Omega 3/DHA combination. This decision was based on research about DHA (which is now found in baby formulas as a crucial element in brain development). We do not use Piracetam.

About 20 months ago we added ginkgo to Hannah's daily intake. Ginkgo is the first herb she's had, and it's the first thing that we've supplemented that actually surprised us with an obvious change. Language has always been one of Hannah's strengths, but we were amazed with her new awareness of conversations and her ability to express herself more maturely. We always use a low dose when starting a new supplement (additionally, I always try the supplements as well, before giving them to her, so I know how they taste (fish burp?) or make me feel). Our goal was to get to 180 mg/day. We had been giving her 120 mg in the morning, and then an additional 60 at night. We weren't seeing any difference until one day I was late in giving her the vitamins (it was after lunch), so I gave her all 180 mg at once. That night at dinner she said an amazing sentence, something like, "Chris, would you describe how the dogs in Hotel for Dogs managed to escape the police?" Since then I give her all 180 mg in the morning. More recently we have added another 60mg at night since she has grown considerably in the past year.
Hannah has various blood tests done annually:
CBC, Vitamin A, Selenium, Zinc, Ferritin, Iron, Homocysteine and a full Thyroid panel.

morning vitamins
Here's the run-down of her current protocol:
Nutrivene-D, 12 capsules a day (dosage by weight)
1500mg ProDHA
2 probiotic capsules
500mg calcium with Vitamin D.
Her iron stores were low this year, so we are adding a small amount of iron to her diet (typically iron is not recommended in the Ds population as it contributes to oxidation and is difficult to excrete excess iron).

evening vitamins

I'd like to point out that there is another protocol, one put out by the Changing Minds Foundation. We already were using some similar components of the CM regimen, but not all. I have done some reading about the use of Prozac and its potential for neurogenesis. I do not doubt the potential for it to be a valuable player, but at this time we are not going to pursue pharmaceuticals. I understand that the national Ds groups and other prominent Ds researchers have felt the need to discourage people from using the CM protocol to protect themselves legally, since the use of Prozac for neurogenesis would be an off-label use. I encourage everyone to do their own homework and decide for themselves what approaches they want to pursue for their child.

The last thing is that most doctors are recommending things like fish oil and antioxidants for the general population for optimal health. I see no argument against that usage, so why should we not use the same logic with the Down syndrome population? Our foods are becoming less and less nutritious, we are all at risk for deficiencies.

So there you have it. I'm happy to answer questions or clarify any points regarding Hannah's protocol, via comments or email.

Addendum: I have a follow-up post you can read here.

July 5, 2009


Self-Talk is very common in the Down syndrome population, and boy does Hannah love it! If she has time alone, in her room, or in the bathroom, and even sometimes in the car, she will have conversations with herself. Sometimes she includes imaginary guests in her discussions (her sister, teddy bear, a friend, a TV character, etc). These conversations are fast and furious, covering a vast array of topics, complete with different character voices. Some times this is annoying to me. Other times it's just entertaining to eavesdrop.

Here's some that I picked up this evening while Hannah was finishing up her post-shower routine--this is about 90 seconds worth:

"Oh yes, The Lonely Goatherd is my absolute favorite, but I don't know about So Long, Farewell."

"Hey Diego, did you see my trophies? I have two bike trophies. I was on the Orioles team when I got my first baseball trophy. With my coach."
"You had a coach?"
"Yes, Coach Sandy. I am really good at hitting and batting and outfields and bases."

"Oh look! I found my bare necessity!" (I'm assuming she was joking about her undergarments.)

"My sister was a chicken."
"Your sister is a chicken?"
"Yes, she is. BOCK bock bock." (this refers to a family joke about a chicken)

"B-O-O that spells Boo! Whoa! Just like when a monster said, 'Bwahahaha' to Shaggy and Scooby. Shaggy was standing up and Scooby jumped into Shaggy's arms."
"Fred is the leader."

"Now who has time to bake cookies, little red hen?" "Me and my mom will bake them."

I'm glad that she can entertain herself, and she is completely aware that it's inappropriate to talk to herself when she's around others. Self-talk seems to be another way of processing information--sort of like a running dialogue of what going on in her head.

Anyone else have any good self-talk quotes?

July 2, 2009

Orthodontist/Medical/Adolescence and whatever else pops into this post

Yay for the new orthodontist! He is exactly what we needed after Hug-o-rama office. Dr. B. is a perfect match for Hannah's personality and mouth. He wants to try to see how much space he can create with just the braces rather than start her out with the palate expander. He was pleased that we homeschool because then it's easier to schedule some extra time at each appointment and Hannah won't be hurried. He spent lots of time chatting with her, and explaining about the molds he'd take the next time she visits him. He gave her some mold forms to practice holding in her mouth. This is exactly the kind of thing I regularly do with her, practice playing dentist or doctor so she is ready for the actual procedure.

Before she gets started with her braces she has to have a tooth pulled. It's a baby tooth that needs to get out of the way for the last adult tooth (which is trying to come in sideways). So we've got to meet with the oral surgeon. I know our dentist could do it, but I'd rather have a surgeon who could give her a little Versed to keep things sweet and comfortable. I like that Versed impairs short-term memory so she won't remember much of anything.

The last time she had Versed was for her tonsils. I had asked about anesthesia and they told me that first they'd give her an IV and give her Versed. I thought that was ridiculous because it would make more sense to give her the Versed orally and then give her the IV when she was already loopy. It's not like she would have had a problem with the IV, but what's the point of the Versed after the trauma of the IV? You might as well go straight for the anesthesia at that point instead. Anyhow, they did do it my way and it worked out great. (Oh man! Am I powerful or what?) (These are not the droids you are looking for.)

The night before heart surgery 2 1/2 years old

Hannah has been pretty healthy for the past five years or so. She nursed until she was 2 1/2 years old, and we started her on nutritional supplements soon after she had her open heart surgery. (I'll post more about the supplements later--I know there are many people who are curious and many people who are not curious, so I'll make that an independent post to read or skip as you desire.) Even with nursing and optimal diet, I can't say that she was healthier than any other young child with Ds--in fact, I'm pretty sure she fell into the sicker-than-most category. We did the antibiotic cycle plenty of times, and a few short hospitalizations for respiratory issues. She'd get a cold, but it would never leave, so she'd have a secondary infection. We did all the saline sprays and nasal washes, but she'd stay green and I'd eventually cave in and bring her in to the doctor. Within a day or two she'd be completely clear. Until a few weeks later when she'd get the next cold. She was sick the most from October-March.

As she grew, the illnesses became fewer and farther between. By age six she started being able to get over colds more easily. She was getting bigger and she was more efficient at coughing and blowing her nose. It also helped that we homeschool, so she wasn't around other kids all the time (we do, and did, lots of activities with other kids, but I was always around to make sure the hands were washed). She's done pretty well for the past 5 years, rarely on antibiotics for lung or sinus issues.

Age 6, when she was always dressing up that
spring horse of hers. Crazy girl!

Now her medical challenges run more along the lines of apnea and acne! She has been doing very well with her CPAP machine. I still put it on her after she's drowsy or asleep, but she is capable of putting it on herself. It's just a little bit sweeter to let her listen to her music and fall off to sleep. She takes care of all the rest of the details, removing her mask in the morning, unplugging the machine and taking out the humidifier. It seems that the mask is helping block some of her oil glands as well, so she has recently started getting a few pimples. I can't believe it! She's just 11...

Hannah is definitely on her way to growing into a young woman. Together we have been reviewing some books about growing and changing bodies. Hannah is very excited to begin her menstrual cycle, which we expect within this next year. She tells close friends that she is "growing into a woman". We use the words that we found in the "Bodies, Boundaries and Sexuality" book (still love it the best--even for preschoolers, don't be scared! Go buy it!). "Having your period each month is one way you can tell that you are healthy." I was so glad to have this explanation for Hannah because I really didn't want to get into the whole reproduction aspect of the menstrual cycle. Hannah knows about how eggs are fertilized and how babies grow, but I don't really want to have her assume that because she has her cycle that she will be able to have babies. I know that women with Down syndrome can be fertile, but at this time I am not thinking that becoming a mother is in Hannah's future. Not having to discuss eggs and the reasons for her period is a good thing right now. In a few years, when she discovers boys and has more questions about relationships, it will be a better time to discuss these details of reproduction in depth.

It is so helpful to have Kate around to follow through with these discussions as well. Hannah looks up to her siblings very much, and both Kate and Chris take their roles pretty seriously (and make sure she gets her fair share of sibling teasing as well). What will happen this fall when they are both gone?!?! Maybe I need to get an exchange student. Anybody want to get rid of their teenager for a while?

July 1, 2009

$36.91 for admission? What a deal!

Baseball season is over. We missed the last game while at bike camp, but got the team pictures the other day. The Miracle League is great. I have mixed feelings about putting Hannah into segregated settings, but I know that she'd not have any fun at all on a regular softball team. She could probably manage the batting, but she doesn't have good fielding skills. And the games would be way too long. She loves to play baseball, and the Miracle League makes it happen. And we love it!

In other family news, Kate has begun doing respite care for Miss Delicious herself, Lois. Kate also will begin her training at Starbucks for her other job while she waits for the rest of her life to begin. Chris has not had much luck at finding a paying job, so he will be polishing up his German online and doing some volunteer work. Only 7 weeks until he leaves for college!

We will be home for the next couple of weeks--hallelujah!

In blogging news, there is a family awaiting the birth of precious Kaitlyn next month. Her mom, Jenee, just started a blog, so go give her a warm welcome! I see that she is already getting plenty of traffic (once you get listed on Sarah's blog, you get everywhere! You are so amazingly popular Sarah!!).