Braska Retropost: Meeting Henry

A few weeks ago me and Jack went meet a new friend, Henry.  Well, he’s not so new, but I never had met him for real, just in our blogs.  Our friend Matthew was there, too. We played at Henry’s grandma’s house in the back yard. It’s SO pretty!
We had a pretty fun time.  But there was a little oops.  See that blue tub in that picture up there? I was standing up there holding on to it, Jack was standing next to it by that little bush plant.  I decided to give Jack a big hug, so I put both my arms on him, but he couldn’t hold me up. So we fell back onto that bush, then we flipped over our heads and down the hill.  We weren’t too happy about it, and we screamed pretty loud, but our mommies got there pretty quick and we were ok.  My mommy said she really wished she had it on a movie for us to watch over and over because it was kind of cute.

Later Jack did end up with a boo boo when he fell and bit his tongue.  It was icky and bloody!  But everyone’s ok, don’t worry.

Here’s three of the mommies.  Miss Ria had already left to go home.  Miss Julie is Jack’s mommy, Miss Heidi is Henry’s mommy, and there’s my mommy.

Miss Heidi and Henry went back home to Texas later, but we will be sure to get to see them the next time they come to visit!  Thanks for asking us to visit, Miss Heidi and making lunch!!

Mommy report: Update, part 2-gross motor

Again, to review, Braska is 34 months old, she rolled over at 8 months, she sat independently at 13 months, and she crawled consistently at about 25 months. Over the last year she’s slowly conquered pulling to a stand, cruising, and taking steps with two hands help.

Braska has PT every week.  She loves her Miss “An-juh-wa” very much, and she performs better for her than almost any of her other therapists.  She has really taken off over the past few months since we’ve been having some sessions in the motor therapy room at Braska’s school.  She LOVES that room and is totally energized when she’s in there. They swing (a favorite always) and climb and do little obstacle courses while crawling.  She especially loves the space maze, which she has finally been able to master—all three levels—all by herself.  I often say that if we ever were to win millions, one of the first things I’d do would be to build one of those rooms on our house and fill it with all that cool therapy stuff.

She slowly worked her way through pulling to a stand with help, doing it on a flat surface (like a wall, nothing to grip) and cruising down the couch and then a flat surface, like down the hallway.  In the last month or so, she has started to try to stand up on her own, and she can sometimes do it for a second or two, but usually only once, then her little legs don’t cooperate after that.  She likes to be upright, though, and she spends alot of her days standing at the toy chest, the couch, Kinlee’s ExerSaucer, or at the front door looking out.

A couple weeks ago, her PT told me that Braska’s teacher at her pre-preschool said she had taken a step at school.  I was surprised.  We tried to set her up for repeating it at home, but she just lunges once she’s standing, not moving her feet. 

Then last Friday she took a step going from a chair to the couch, and again I was surprise.  Sunday we went to M’s family’s house for football watching, and Braska blew us all away by standing up from her little wooden chair in the middle of the room and taking 2 steps to the coffee table.  This was the first time she had done that unprompted.  Everyone got all excited and then she did it a few more times between people on the floor with her.  We debated if we get to count that as her “first steps,” knowing that it will be a long time still til she is officially walking, but I think we’re going to give it to her.

Her biggest issues are that she is just plain one of the lowest tone kids that some of our therapists have seen.  We have had this comment shared with us on several occasions.  She just has to work SO hard to move herself at all.  It doesn’t help, I’m sure, that she’s so darn small and light. She doesn’t have much muscle mass at all.  She struggles a great deal with her core strength especially, and even with her SureSteps, she has a hard time keeping aligned right and balancing on her own.

One thing she has down pat is crawling…finally.  She is a speed crawler at this point!  Don’t turn your back because she will be gone!!  She has also mastered climbing the stairs by herself, and pretty quickly, and she is just now getting the hang of going down the stairs the proper way.  We don’t let her do it unsupervised yet, but she’s making great progress there.  She loves to climb up on the couch or into the recliner.  Any climbing she can do is fun for her.

Overall, she’s working hard and gaining strength, but it is just a VERY slow process with her.  I’m guessing at this point that Kinlee will walk before Braska does, which will be weird, but it’s fine.  In the end, it doesn’t really matter.  And I can catch them easier if they’re crawling anyway!!

Stay tuned. Update, part 3—speech will be next.

Mommy report: Update, part 1--Feeding

Dishes, showering, laundry—all on hold.  I just can’t keep putting off an update on this girl or I’ll forget all this before I can get it down.  Since this is my main record of Braska’s goings on, it’s important at this stage.

We’ll start with feeding, and there will be at least a few other categories to follow soon.

To refresh for anyone who might be a newer friend here on the blog, Braska doesn’t eat orally, not regularly, never has.  She has a g-tube/button, and she gets all her nutrition via Pediasure through her button.  She has no medical issue that causes this problem. This is not a “Down syndrome thing.” She chooses not to eat.  She does not show hunger or thirst, and she couldn’t care less if she eats or not. This is a behavioral issue.  Even with our ability to feed her without her help, she still has always been underweight.  At 34 months, she is just under 22 lbs.  Because her weight is low, we cannot do more stringent caloric challenges (holding back on nutrition/food/milk, causing her to become more physically hungry and want food) because she’s not got any weight she can afford to lose in that process.

The day Kinlee was born, Braska ate some pudding, if I remember correctly.  But she ate that day, and the following days.  It was very small amounts at first, a tablespoon or two on a good day.  Sometimes only a spoonful, but we offered it and required that she eat something a couple times a day.  After about a month, she was eating fairly consistently at the 2-3 tablespoon mark, usually twice a day.  We started up again with her nutritionist/feeding specialist, and I could tell immediately that it was not going to be a good thing.

You see, the smallest thing can change her course when it comes to feeding.  A strange person present during feeding, an unpleasant experience because she’s too tired.  A little choking sensation, though recovered quickly, can ruin her for days.  When the nutritionist came that day, I had a bad feeling.  She’s not a bad person, but I just had a gut feeling it was too soon for Braska.  And I was right, unfortunately.

She refused to eat for her, and she then refused to eat for me for the following 3 weeks.  Yep, it can go just like that.  She decides she won’t eat, and that’s it.  There’s no “oh, she’ll get hungry and eat” thing.  She can go days without food or drink and still not ask for it.  She’s shown that by ending up in the hospital when she was younger.  Super stubborn is her thing.

With alot of work, we got her back to eating a little, and she has continued to progress slowly.  We cut out her feeding time with the nutritionist, and made those visits only about making sure she was getting enough and doing a weight check.  This has gone well.

Most recently, she’s been surprising us with how much she is accepting.  Generally, her habit has been to just taste things.  She would accept as much liquid (like a sauce or something) that would remain on a fork.  Not much.  But taking quantities of food has never been something she’d do.  She also has always been a high-flavor girl, preferring tastes that are very spicy, highly seasoned.  Nothing as bland as baby foods or unseasoned vegetables. 

But lately she has been taking baby foods, straight from the jar, sometimes with added fat and calories from various sources.  And she has taken an entire 4 oz jar at a sitting on several occasions in the last couple of weeks.  That’s a BIG deal around here! She is also becoming much more willing to take whatever is offered.  She hasn’t really rejected a food in a while.  She’s also taking sips from a sippy cup with no no-spill valve in it. Very small sips, but it’s something. No straw, no open cup, and of course, no bottle.

She still doesn’t ask for food. She will not remind us that it’s time to eat if we’re busy and don’t offer solid food. But she’s accepting it when offered with greater consistency. Sometimes she will still get obstinate and not want to open her mouth, but she can be coerced with minimal work.  That’s great progress for her. 

Textures and self feeding are still a long way off.  She only takes pureed foods, yogurt, pudding, with the most textured accepted food being baby oat cereal with Pediasure or juice.  She takes it a tad thicker than Kinlee does, but still not that challenging.  For now, we’ll continue to work on quantity.  Soon we’ll try to address textures, attempting to chew (which she will NOT do at all), and self feeding.

Feeding issues are so frustrating.  And I’ve yet to find any other kid who is as old as Braska, has no medical issues related to feeding/digestion, and still refuses as thoroughly as she does. It’s not like she only eats 5 things, or she only wants PB&J with crackers for breakfast, or she won’t eat her vegetables at dinner, or even that she’ll only take a bottle. It’s lonely in this kind of position, and there’s not alot of info out there, but that makes our progress even sweeter.

We know very well that she could decide tomorrow not to eat for days, weeks, or months.  We always rejoice with a bit of a guarded sense.  But I’m glad she’s come this far.  We’re working very hard to protect the experiences so that we don’t suffer any setbacks. I’m proud of her that she’s come to this point.

Stay tuned for update, part 2—gross motor.

Great article: Seen through loving eyes

Beverly Beckham writes for the Boston Globe and has many wonderful articles in her archives.  Yesterday, she had another winner, called Seen Through Loving Eyes.   What do you think? Have you had similar experience? Share your thoughts in the comments.

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My granddaughter Lucy is six years old and is part of a class of people that is quietly being eliminated in my country. She has Down syndrome, a genetic condition that frightens so many women that 92 percent of those who learn they are carrying babies with it choose to abort.

Dr. Brian Skotko, a genetics fellow at Children’s Hospital, fears this number will rise. Prenatal tests are invasive, carry a risk to the fetus, and are given in the second trimester, so many women choose not to have them. But a simple new and non-invasive blood test, to be given early in a woman’s pregnancy, is coming, perhaps as early as next year.

“As new tests become available, will babies with Down syndrome slowly disappear?’’ Skotko ponders in a soon-to-be-published article in the Archives of Disease in Childhood, (a British medical journal) available online now.

It’s easy to understand why parents fear a diagnosis of Down syndrome. You Google definitions of it, and even now archaic words and misinformation pop up. It’s the same in doctors’ offices. Pregnant women are told only the negatives. Old stereotypes linger.

My granddaughter cannot do all the things that typical kids can. She doesn’t come home from school full of stories. They may be in her head, but we can’t see in there. She speaks and sometimes we don’t understand. She can’t make a teddy bear with paper and glue, not without help. She can’t understand why her grandfather would rather watch baseball than Shirley Temple. She does not have the same skills and abilities that her 5-year-old cousin Adam has.

But Adam doesn’t have the skills and abilities she has. He doesn’t always enter a room and greet everyone with a big smile. He doesn’t always leap to his feet and race to his father when he comes home from work. He can’t sit for hours in a fancy restaurant or through a long movie. And he doesn’t know instinctively when someone is sad and needs a hug.

He can field a ball and she can work a room. He sings a whole John Denver song, and she sits and applauds.

This is what doctors don’t tell mothers having babies with Down syndrome, that you will see in your child amazing things that you won’t see in ordinary children.

Of course, parents want healthy kids. And some get them. But children get sick. They get in accidents. They lose limbs. They suddenly stop talking one day.

Children in wheelchairs, on ventilators and crutches? Children hooked up to IVs getting chemotherapy? People on waiting lists for transplants? People with chronic diseases. Soldiers changed by war. Civilians changed by an accident.

They weren’t born this way. But if there were a test that showed their future - that showed diabetes and cancer and autism and muscular dystrophy and mental illness and depression and alcoholism - would women take it? And seeing what would be, would they choose to abort?

Last week we took Lucy to Davis’ Farmland in Sterling, where we played with the animals. Then we went to a wine tasting at Nashoba Valley, where Lucy drank juice and shared our cheese and crackers and enjoyed the day.

All kids with Down syndrome are not like this. But this is Lucy. She makes me notice the ordinariness of people who don’t have it.

In the play “Cabaret,’’ set in Berlin as the Nazis rise to power, a man loves a woman he’s not supposed to because he’s Christian and she’s Jewish. He tries to explain his love to his friends. And because “Cabaret’’ is a musical, his explanation is a song.

“If you could see her through my eyes, you wouldn’t wonder at all. If you could see her through my eyes, I guarantee you would fall, like I did. . .’’

Like I did. Like Lucy’s mother and father did. Like all the people who know Lucy and people like her did. Like the world would, too, if only given the chance.

Some answers for our normie

Just got back from the dr's office with KiKi. She has blisters on the back of her throat. Well, whatta ya know?! Something IS wrong! I'm relieved in a way, because this whole deal of the unknown is the most challenging to me. Dr. A also gave me a script for lactulose to help with her constipation too. Braska had this issue and did well on this med, so I'm glad she agreed to try it for Kinlee. Hopefully, if we can get those two things fixed (just pain support for the blisters) then maybe Happy KiKi will return.

I keep meaning to do a full post on this, but I'll just state it for now: "Everyone" seems to think kids with DS are hard work, but Kinlee is WAY more difficult and more exhausting and more frustrating than Braska has ever been in her almost 3 years. That doesn't mean we don't love her and enjoy her differences, of course, and there are rewards, but for the record, normies are no cake walk either in my book!

(Just to clarify our "normie" and "Downsie" terms... they are terms of affection given by M to the girls. Nobody is claiming they're PC, but if you've been around us AT ALL, you'll know that's not really a forte of ours anyway. So don't be upset... I kind of see it like calling a roly poly baby "chubkins" or "our little Michelin baby" or whatever. There's only love there, people. )

Divorce and Down syndrome

Jeffrey Pomranka, the COO of the DSAGSL, wrote a letter to the editor of the Post-Dispatch that was recently published.  It was related to the popular story from last month when a fan fell over the wall at a baseball game and was assisted by Albert Pujols.  The fan had a son with DS.  Jeff’s letter is well worth the read.  Click here for the letter and Jeff’s explanation.

Braska: Wanna know how big?

Mommy likes me to keep track of how big I’m getting, so she wanted me to put it on here so she won’t forget.

Yesterday we went to a place and they checked to see if I had gotten bigger.  When they put me in the little chair that tells them if I’m eating good, it told them I was 22 lbs.  That’s really big!! I think that’s bigger than I’ve ever been before!  And then they made me lay down on this big hard thing to see how far down my feet went.  I did not like it at ALL!  But when they let me get up, they said I was 33 1/2 inches.  I think that’s good, but I’m not sure.

Anyway, I’m with Daddy and KiKi at Grandma C’s today so that Mommy can have some quiet time at home.  We’ve been kind of hard on her this week, and she was asking us to start being good girls again…especially KiKi.  She was really bad.  I’m the good girl, don’t worry.

Oh happy day, less question mark.

As a follow up to yesterday's post, I got word today that we will NOT be assigned to the new guy, but we will have an experienced coordinator after all. I feel SO much better.

I also learned some other info today that made me think I still have some kinks to work out, so I'll be taking care of that this next week.

I'll be SO glad when this transition/IEP stuff is behind us. I want to do the very best I can, but there's part of me who wants to just hide and let it all happen without me.

Trading a sure thing for a question mark

I have mentioned before that our service coordinator with EI is the best. And she is. Or she was. Today was her last day with First Steps, and I’m not anywhere near happy about it. Sure, I wish her well, she’ll be a great asset at her new place and she’ll do a wonderful job. The kids will be blessed to have her.

But we’re less than 3 months from transition from EI to school. It’s a BIG transition. I’ve done my homework and I’m continuing to learn, but I was SO counting on her to make sure we got through it safely. The timing is just so plain sad.

And, though I’m trying to be open-minded, our new coordinator is new to the First Steps system, and that is enough to make me not feel confident. He’s probably very nice, he’s probably really smart, and he’s probably good with kids, but will he be full of experience and knowledge when I need it most? We’ll see… I’ll hope so. I’ve just come to find out today that some that were in her caseload are going to a much more experienced person. Since we’re transitioning in less than 90 days, it would have been nice to be in that crowd.

Thankfully, I’ve recently gained another ally in the process who I’ll be leaning on even more now. I’m going to be setting up a meeting with her next week to touch base and get on the same page. She’ll be involved with us for the next 3+ years at Braska’s school, so I’m looking forward to that.

It’s not the worst thing ever, it’s probably a really great thing for her, but still, I’m bummed that it will mean a less-than-smooth transition. It’s selfish, I know.

We’ll sure miss her, no doubt!