More about the 6Q26 and 6Q27 deletion...

I noticed the other day that someone found this blog by searching for 6Q26 - in other words, Natalie's gene deletion.  She is missing 6Q26 and 6Q27, but I wanted to touch back on this for just a minute because I remember googling for information about her deletion.  I remember that the doctors couldn't tell us much about what to expect for Natalie.  They couldn't tell us how she would develop, if she would ever walk or talk, be able to live normally- and it was a scary time for me as her mother.

I found out about Natalie's hydrocephalus near the 20 week mark of my pregnancy.  The second half of my pregnancy was filled with lots of crying.  There's the idea that you need time to mourn your "perfect" child, and I think I did do that.  Natalie was born by c-section around week 36 of my pregnancy.  She spent some time in the NICU and didn't have her shunt placed until she was more than a month old.  When she was in the NICU, they found that she had a tethered spinal cord and a mass on the end of her coccyx.  These three features together were enough for the geneticist to be curious, so she took a sample to do some testing.  It came back that 6q26 and 6q27 were missing.

Natalie is two and a half years old now.  She walks, she talks, she is absolutely amazing.  She's affectionate and funny.  She has had a shunt placement.  She has had two shunt revisions.  She has had a surgery to de-tether her spinal cord and remove the mass on her coccyx (which turned out to be a benign teratoma).  She has had one surgery to straighten her eyes because she's farsighted and we didn't know it until her eyes crossed.  She wears glasses.  She goes to physical therapy, occupational therapy and speech therapy. 

She didn't sit up on her own until her first birthday (December 3), but she was walking on her own by the end of the next summer.  As of her second birthday, she only said about a dozen words. (A few months of speech therapy later and she's well over a hundred.)  She can feed herself with her fingers, but is still working on using a fork and spoon.  She gets it to her mouth, but like most kids, a lot ends up in her lap or on the floor.

She has seen just about every specialist they can come up with.  She has had studies done of her heart and her bladder.  She has a developmentalist, a neurologist, a neurosurgeon, an ophthalmologist, a urologist- along with her pediatrician and dentist. 

It's not the quietest life, we're busy with her therapy appointments, we have something three days a week.  We were down to seeing her neurosurgeon once a year, but then she had a shunt failure and we're seeing him again this week for a follow up from seeing him in April.  Most everyone else she only has to see once a year, though.

I really don't want this to sound like our life is depressing.  It's a lot of stuff, but it is entirely manageable.  Being at home with Natalie, I never think, "She's SO behind!" and when she reaches milestones, I don't think, "It's about time!  She should have been doing this months ago!"  She is doing things in a very normal way, but on her own timeline.  She works hard, and is just as excited about new things as her sister was.  Her hair grew in over her scar from her shunt replacement, and it's easy to not think about it.  She's just a kid doing kid things.

I tend to be a worrier.  I have memorized the possible signs of shunt failure, and I've seen which signs she exhibits when she has a shunt failure.  I am always keeping an eye out for these things.  I also know what I need to do in the event that she has her first seizure.  I'm sure I'll be terrified, but I know what I need to do. 

It's important to remember to keep small goals and steps.  Really, take things one at a time.  It can be overwhelming.  Ask lots of questions when you are with the doctor.  Find out what kind of shunt your child is getting and why the doctor is picking that type.  Write things down, it's easy to forget when you are overwhelmed with the emotional aspect of things.  Get your child enrolled in your state's Birth to Three program.  There are different names in different places, but you should be able to find it with your pediatrician's help.  And what helped me the most was talking to friends about what I was feeling and what I was going through.  It was a really hard time because it was a giant upset to my life.  I was never going to be the mom of a child with special needs.  Stuff like that never happened to me.  But then, it did happen.  About three years after I found out about the hydrocephalus, we're fine.  We're a happy family.  She's healthy.  She plays with her big sister and irritates her big sister in normal little sister ways. 

I don't know that this will answer any questions of a new parent of a child with this deletion, but I realized I hadn't talked much about it since we were in the heaviness of it while it was happening.  Please feel free to comment and ask questions or even let me know if you'd like to email privately about it.

Rainbow Hearts Hat

This is the third knitting project I did.  I made it up for Lauren, who picked out the rainbow yarn at the craft store.  Here's the pattern as I wrote down in my notes:

size 3 16” circular needles
Caron Simply Soft worsted weight acrylic yarn in white
Bernat Baby stretch worsted weight “Skipping Rope” color
Cast on 100 sts with the rainbow yarn using long tail cast on
knit 2 rows of k2,p2 w/rainbow yarn
knit 15 rows of k2,p2 w/white yarn
knit 7 rows w/white yarn
knit 2 rows w/rainbow yarn
knit 2 rows w/white yarn
Next is the heart chart-I'll write it out and try to get a good image added later. It’s 9 rows, 10 sts repeated around, all knit sts.
Row 1: *1 Rainbow st (R), 3 White sts (W), 1R, 5W* repeat
Row 2: *2R, 1 W, 3R, 3W, 1R* repeat
Row 3: *6R, 3W, 1R* repeat
Row 4: *5R, 2W, 1R, 2W* repeat
Row 5: *1W, 3R, 2W, 3R, 1W* repeat
Row 6: *2W, 1R, 2W, 5R* repeat
Row 7: *1R, 3W, 6R* repeat
Row 8: *1R, 3W, 3R, 1W, 2R* repeat
Row 9: *5W, 1R, 3W, 1R* repeat
knit 2 rows white
knit 2 rows rainbow
knit 1 row white
*k1, k2tog* rep white
*k1 R, k1W* rep
knit 1 row rainbow
*k1 R, k1 W* rep
*k2, k2tog*rep white
*k1, k2tog* rep white
*k2tog* rep rainbow
my notes here aren’t clear on the number, but I think it’s rep until 8 (?)sts left, weave end through remaining loops, cinch closed, weave in all ends.

Knitting

I've taken up knitting.  On February 5, I picked up knitting supplies, taught myself to knit and purl, and started making the Setesdal Love Hat from the Knitscene Winter 2011 Issue.

(You can purchase it 

through Amazon by clicking in the handy little box right on the left.) 

There are a bunch of really adorable fair isle projects in there, and when I get confident enough to try sweaters or tops, I'm doing the two in there!  Plus, I'll be making a few more of these hats to give away to friends and family.  I've already bought the yarn and have been thinking about new color combinations since finishing the first one.

Here's how it came out:

There are lots of mistakes in there, but I did learn how to change colors, knit in the round and how to pull out mistakes.  The gray yarn feels kind of yucky, but I bought it based on color and the fact that it had a shimmery thread running through it so the hat sparkles in light.

Knitting has gotten in the way of my reading a little bit.  I'm trying to find a balance with both and everything else I have to do.  Ben bought me a Kindle for Christmas and I L-O-V-E it!  I'm on my third book for the year, which seems like a slow start compared to last year.  Right now I'm reading The Fiery Cross by Diana Gabaldon.  The Outlander series has taken over my reading list.  I already have the rest of the books purchased and waiting on the Kindle, so whenever I finish one the next one is right there, and I don't have to carry around multiple 700+ page books.  Super super handy!

Natalie started speech therapy in January and it has been good for her, and useful for me, too.  She's up to nearly 60 words now and didn't have quite 30 when we started.  Physical therapy is still going well and next week she has another evaluation at occupational therapy.  

Five Question Friday, Take Four

1. Did you have a favorite blanket or toy as a kid? If so, do you still have it?

I remember having a large panda bear I called Poppy, the same thing I called my grandpa who bought it for me.  It is in my dad's garage still.  (I hope!)

2. Do you dream in color?

I don't know.  I think so.  I remember things being colors in my dreams afterwards.

3. How tall are you? Do you wish you were shorter or taller?

I am 5'2".  And yes!  I wish I were taller.  Can I add four inches?  All to my legs?  Please?  Pretty please?

4. If you could have anyone's (celeb or other) voice as the guide on your GPS, who would it be?

Ha, Sean Connery.  I actually put mine on the British voice because she sounds less bitchy than the American voice.  But Sean Connery would be super!

5. Do you return your shopping cart to the corral or leave it wherever in the parking lot?

I return it.  

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So now I've finished reading Harry Potter and the Goblet of Fire and am waiting for Harry Potter and the Order of the Phoenix.  After that will probably be The Girl Who Kicked The Hornet's Nest.  Woo-Hoo!  I've been sewing like mad lately, too.  I made two lunch bags, a dress for Lauren and now a shirt for myself.  This has been my first experience with interfacing.  

Jen and I have been putting a lot of effort into our joint blog lately.  Check it out: Team Awesome.  I know, best name ever!  We have some good things lined up to be posted soon, so keep an eye on it.

Ben has been getting in lots of flight hours.  He dropped the crab pots today and plans to pull them tomorrow.  On Saturday we're going to drive up to Mount Vernon to go to a birthday party.  My friend Andrea (from elementary school) is having a barbecue birthday party for her one year old daughter, Gwyn.  I'm excited to go up.  Last weekend I drove to Seattle to go to Andrea's birthday celebration.  She booked a private ghost tour of Pike Place Market.  First we met at the Abili Room in Pike Place where most people had drinks, but I had a fabulous apple, brie and focaccia bread appetizer plate.  It was so yum.  I wish I had brought my camera, but I didn't.  Luckily, this person did, and they posted their picture on Flickr: http://www.flickr.com/photos/futileboy/3841385498/  Doesn't that look delicious? Then we did the ghost tour, which thankfully wasn't scary at all, but was a good history lesson.  It was fun to see a group of girls I had been in Campfire Girls with but hadn't seen for 13 years.

Natalie is pointing to my eyes now.  She thinks it is hilarious.  I say "eye" every time, and occasionally when I ask her where my eye is, she points to it.  She has been climbing onto the coffee table and the ottoman and just getting around everywhere.  Lauren has been so amazing- believe it or not, she's been doing MATH!  Like, real addition and subtraction.  I can't get over what a genius she is!  And she gets so excited about doing it.  She just loves it.  It's wonderful.  I hope she can hold on to that.

The weather here has been perfect lately, between 75 and 85 degrees, cool in the morning and sunny all afternoon.  I think July in Washington is one of my new favorite things.

Five Question Friday, take three

What?  Again?  Something semi-regular posted on this site?  Will the third time be the last?  Stay tuned.  This week's questions, answered below:

1. What were your school colors?

We were blue and silver.  Interestingly enough, this week my sister texted me a picture of our high school, which was recently painted maroon.  We can't figure out why.  I'm guessing a prank by one of our rival schools?  She said it looked professionally done and doubts it.  I loved our colors.  I've always been partial to blue and silver anyway.  We also had a pretty bad-ass logo, where our initials were shaped to look like our mascot.

2. What's the best compliment you ever received?

Um, I don't know?  Today I was told that I was intuitive by my friend Jen, and also that I had pretty teeth by my dentist.  Those are two recent ones.  Isn't it funny how it's harder to remember compliments than insults?  I still remember a somewhat snobby girl telling me I had a booger in my nose in 4th grade.

3. Do you buy cheap or expensive toilet paper?

I prefer a more expensive toilet paper.  Charmin Ultra Strong to be exact.  If Ben goes shopping with me we come home with something cheaper.

4. Have you ever had a surprise party thrown for you? Or have you had one for someone else?

No on both counts.

5. What is one material possession that you "can't live without"?

Hmmm, my iPhone probably.  I dropped it and shattered the screen and just about had a heart attack.  Got a new one at the Apple store, thank goodness, and life is happy again.  But, in pre-iPhone times, I would have said my computer and more specifically, my internet connection.  

I know I could live without them, but I like life a lot more with them.

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Jen and I have been doing some more work on Team Awesome.  We started two new features, TeamPhotos and TeamPrintables.  We've been working on a new banner and a few other design changes that will be coming soon.  

I've been sewing so much!  This week I've been working on a cross stitch piece as a gift for someone. I have four new shirt patterns I need to get supplies for, plus the fabric for another shirt for me and two kids dresses.  

I'm still reading Harry Potter and the Goblet of Fire, which I'm really enjoying.  It's over 700 pages long, though, so despite staying up way past my bedtime, I'm not half finished yet.  Although, really, I haven't been devoting that much time to it since I've been working on this cross stitch.  I feel like I need to make myself do one thing at a time, it's starting to catch up with me.  I'm tired today!  I'll be heading to bed shortly after the girls tonight.

Sewing

On Tuesday the girls and I drove about an hour north east to Bremerton to meet my grandma, who I call Ema at Olive Garden for lunch.  It's really nice that we can have a short visit more often when each of us only need to drive an hour each way.  It's especially nice when we do it on Tuesdays after Natalie's physical therapy and we're already out that way and the drive drops to 45 minutes.  I'd love to be able to do it every week or every other week.  Knowing we'd want to do more than just lunch, Ema told me which stores she likes to shop at in the area around Olive Garden and she mentioned JoAnn Fabrics and Micheals and Ross.  I pulled out a book I got myself with some gift cards I got called 101 One-Yard Wonders which is a book with plans for - wait for it - one hundred and ONE sewing projects that can be completed using one yard of fabric.  Most of them have several other materials you need, like coordinating thread, bias tape, batting, fiber fill, buttons, velcro, etc., but most of them are also really easy to do.  I flipped through and noted three different projects I wanted to try and made a list of the materials I'd need.  After lunch, we went to JoAnn and I bought the fabric for all three projects and because I found another fabric I thought my friend Jen would like, I decided I'd do two of one of the projects.  I can't say yet what it is because said project is in the mail, on its way to Germany as we speak.  When I got home, I promptly sat down and dusted off my sewing machine and started on her project and had it all finished in about 3 hours.  And that's with the distraction of two children.  The directions in the book are pretty easy to follow and many of the projects don't have a paper pattern, they just give dimensions for various squares and rectangles for you to sketch out and cut.  After finishing Jen's project, having dinner, and getting the girls to bed, I started another one yard wonder- a dress for Lauren.  They described it as an "updated pillowcase dress" and call it a Ballet-neck Toddler Dress.  It's SUPER cute! It has one tiny pattern piece to cut out and keep track of, and the rest is just a giant rectangle. (I bet if I make it a few times I'll be able to do future ones from memory!) I finished most of it before bed and waited until morning to have her try it on so I could get the elastic around the waist the right length and so I could hem it to the right length.  She of course wanted it to be so long that she'd trip over it, but she told me that would be ok, because she'd just hold the front up with her hands when she walked.  You know, like a princess.  I hemmed it to just below the knee anyway.  Probably ruining the entire dress.  She wore it all day anyway.

I haven't started the third project yet, it's a changing pad and a little pocket to store 2 or 3 diapers and a small container of wipes in.  Maybe I'll get to that one this weekend.  Tonight I'm working on the second one of the unnamed project that I made for Jen but so far it's not coming along well and thus, I stopped to blog.  Sewing does make me happy, though, and I'm glad I have been making time to do it this week.  I stopped into Barnes & Noble this evening to flip through some sewing books and I found a couple that I liked.  I'll order those with some gift cards and hopefully have them in another week.

On Monday and the Friday before we finally had a little bit of speech therapy for Natalie.  It was actually parent education sessions that last about 30 minutes.  Most of it was stuff I already was doing and know, but it's nice to have reassurance that I'm doing things I should be doing, and also nice to have someone tell me not to worry about some other things.  Natalie has been babbling a lot more and has been overall more vocal.  It was great to hear her laughing at her sister over and over tonight at the book store - so nice that I didn't care if she was bothering anyone else in there.  Small victory for us and for her!  Anyone who didn't like it could go to hell.  (Not that we had any problems or looks.)  And I'm pretty sure she'll be walking any day now, she just thinks she can't do it and stops herself and sits down.  I've got to try to boost her confidence about it, she has it, it's right there, just about to happen...

I took the girls to the new splash park on base yesterday.  It's really cute.  Lauren had so much fun.  Natalie?  Not so much.  She doesn't really enjoy getting sprayed with water.  She and I sat on the sidelines and watched Lauren run around and play.  I'm hoping we'll get a chance to go tomorrow, if not, we'll head over on Saturday.

I'm especially glad I've had time to sew since it's been too hot to cook.  I miss baking cookies!  I've been spending my spare time in the evenings reading (I'm catching up with the Harry Potter series.  I've read Harry Potter and the Sorcerer's Stone, Harry Potter and the Chamber of Secrets, and Harry Potter and the Prisoner of Azkaban.  Harry Potter and the Goblet of Fire should be waiting for me at the library tomorrow) and watching movies (the first two Harry Potter movies and 'An Education').  It's been nice.  The girls have been doing pretty well about sticking to a bedtime schedule.  Well, Natalie has been doing fabulously, she's ready to go down at 8 on the dot, starts rubbing her eyes about 10 minutes before and quiets right down and is asleep by 5 after.  Lauren is a little more difficult, she didn't have a regular bedtime until this past May, so even when I can get her into bed at 8 she watches tv or movies until 9, and sometimes I go in after I've turned off her tv and lights and she's still up playing.  I've been cutting down on tv during the rest of the day, though, and she acts better overall when it's off more.  If the tv is on she's able to tune me out completely.

Anyway, I better get back to that sewing project, it looks so sad sitting there hanging out in the sewing machine.

blogs, books, birds, ballet, bikes (kinda)

I've been such a bad blogger this year, I was looking back and except for January, I haven't blogged more than 3 times a month.  I need to hop back on this train, I like doing it, I enjoy having a sort of family diary and I feel good when I have plenty of posts each month.

However, I have been a good reader this year, and I'm on book #17 of the year already.

Lauren painted a bird house last fall and we hung it in a small tree in our back yard.  A few weeks ago we hung a bird feeder next to it and we have had some really pretty birds lately.  I googled and found a good site that has helped me identify the two birds I was interested in and they are a Steller's Jay and an American Goldfinch.  If you quickly google them you'll find some pretty pictures of each one.

The girls are doing well.  I think Lauren is a little bored now that ballet is out, too.  She has been having fun riding her two wheel bicycle with training wheels.  We got a free hand me down Dora the Explorer bike and spray painted it pink and put new princess stickers and a white basket on it.  She likes it better that way.  Natalie is getting close to walking.  She'll go between two things that require a reach and has, though not often, pivoted on one foot.  I've been getting frustrated at her resistance to wear her glasses lately so I popped into a Claire's yesterday and found a pair of glasses with no correction to them.  I've been wearing them since then hoping it will encourage her to keep hers on her face.  It may take a while, I should get used to my new look.