Thursday, May 28, 2009

Practicing for the Big Day

No, Samantha's not wearing lipstick, although I know that big day will come before I know it. Sammi went to her friend Ashley's 3rd birthday party on Saturday, and thoroughly enjoyed the Elmo cake. Lots of red frosting. Yum...
Sammi's party is this Saturday at a local playground. I had originally wanted to have her party at the house, when I knew we were buying a house, but when I think about all the work that needs to be done on the yard first, I think the house party can wait for a year or two. I'm pretty excited--although waaaaaay more people than I'd initially expected to be able to make it are coming (I'm thrilled about this, but surprised--I figured that the last weekend in May would be already booked out by most folks), it'll be like a gigantic playdate of all the little 2 and 3 year old friends Sammi has. I was talking to one of my bosses the other day, telling him how many kids were coming. He has a little girl who will also be turning 3, in July, and said that since she's not in daycare or school (they have nannies), she doesn't have many friends. This goes to show how amazing and tight the Down syndrome community in this area is--only one little girl from Samantha's school is coming (she's the only one we invited). The rest are children that we know through the DSANV events, through playdates, through this mutual, shared commonality (interest, if you like) that has brought us all together. Much of the time, most other people don't have this. I consider us very, very fortunate to have so many friends for both myself, my husband, and Samantha.

Steve's just gone to the airport to pick up his step-mother and his sister, who are coming to visit for the weekend. His step-mother lives in England, but has been over here for a few weeks visiting his sister, who lives in Michigan. We've been cleaning like mad demons, and our bedroom, where his step-mother will be sleeping, is half-painted. The hope was that it would be completed before they got here, but it was not meant to be. She won't mind. I don't think the two of them know what they're in for this weekend--we've got 3 parties (including ours) to attend. Let's see how they do... I'm really looking forward to having them here. His sister was here last about a year and a half ago, and his step-mother was here just over a year ago. I'm so glad they can come again, and this time be here together for Samantha's birthday.

Of course, now that Samantha is just two days shy of 3 years old, it was time for the dreaded AAI x-ray, to determine if she has an atlantoaxial instability, which is a condition that affects about 15% of people with Down syndrome. It's when the two bones at the top of the spinal cord have too much movement, and can cause neurological problems if not corrected, or even death. Sammi went for her x-ray last week, and we got the good news from her geneticist's office that all is well, and she's negative. Whew! This means that she shouldn't have any activity restrictions as she grows up. Her blood test that was done on the same day showed that thyroid was normal, but her zinc is a little low. The doctor suggested that we try Schiff vitamins. Now, I know that this topic comes up all the time on the listservs--lots of people swear by Schiff. We just use the easy-to-find PolyVisol liquid vitamins, which work great for making sure Miss-picky-eater gets what she needs. But apparently not enough zinc. Do any of you use Schiff, and do they have all of the vitamins she needs for a well-rounded existence? I haven't done any research yet to see what they have in them, but thought I'd throw this question out to you first. Thanks, in advance!

Gotta run and pick Sammi up from school. When we get back, her Grandma and Aunti Kaz will be here!

Friday, May 22, 2009

Calendar Sneak Peek

I was just posting on Facebook yesteday about the things that make me late to work in the mornings. One of them is cleaning the bathrooms, and the other one is, well, Facebook. And blogs. My most productive times of the day are in the early morning, both before and after Samantha goes to school. I figure computer/coffee time is best found while Sammi's playing in her room (oh, why does she wake so early??) before I go in to get her, and getting-ready-for-work time is after she's gone to school. Now that my commute's shorter, I have all of that "luxury" time again.

A few of the photographers have sent me some of the images they shot for the DSANV 2010 calendar, and posted them on their blogs. Bethany has a few up on My Other Identity (her photography blog), and Diana Adams of Studio Diana has sent me these images to post here of Brad. I love these shots--I think they have so much heart and insight, and he looks like quite a character. The first image, with his hands over his eyes, is his tribute to the theme of the calendar, "The Eyes are the Mirrors". I think this one is the perfect one to use!

I should have more images and more links to post very soon, as they continue to trickle in.

I leave you with my newest favorite of Sammi that I took at the park a week ago. The original image was pretty awful, and I'd pretty much scrapped it, but then when I started playing around, I got something I really, really liked. Gotta love editing. Now with digital photography, I do have to wonder how many film purists there still are out there, slaving over a developing tank to get the images they want. I like the idea, but you've got to have a LOT of time on your hands for that.

Monday, May 18, 2009

Having a Ball

Just a few quick pics from the DSANV picnic on Saturday. Not as soggy as last year, and definitely more fun (read: No Meltdown). Actually, Samantha seems to be so much more content lately, relaxed and enjoying doing lots of different things. Still not eating anything that's not on the very short list of Samantha-approved foods, but all of her doctors say that's okay, since she's certainly growing appropriately. Oh, speaking of doctors, we got Samantha in for an appointment with Dr. Lewanda, her geneticist. If you recall, I had mentioned that I was disappointed that she'd missed an appointment a few weeks ago, and the next date we could get wasn't until November. But the waiting list came through for us, and we got a call last week. Dr. Lewanda uses both the Ds chart and the typical chart when measuring height and weight, and Samantha's in the 50-75th percentile for weight (34 lbs.) on the typical chart, and in the 50th percentile for height (37") on the typical chart. Perfectly average. :-) I'm quite happy with that! Steve will tell you I'm the one that's always worried when she doesn't want to eat a meal or if she only has half of her dinner, and I'll try to make her eat it. He gets annoyed with me, telling me to let her be, if she doesn't want to eat, don't force her. I know he's right, and I know she's certainly not going to suffer from a missed meal, but I worry anyway.

Wednesday, May 13, 2009

An Apology, and the Need for a Blogroll Update

I have to apologize to my wonderful husband, Steve, for giving credit to Samantha's speech therapists for the closed-lip sound prompt I mentioned in my previous post. He set me straight lastnight by saying it was something he had instituted with her a few months ago, and her private speech therapist that we had before we moved told him that it was a technique that they, the therapists, use as well, so she continued to reinforce it. Sorry, Steve! You definitely started something wonderful with this!

On another note, I haven't updated my blogroll in, uh, I can't remember how long. I'll keep all of the items that currently exist there now, but please let me know if you would like me to add your blog to the list. You can either post it here, or e-mail me privately at While I'm at it, drop me a line or a comment anyway, even if you don't have a blog--I'd love to know who my lurkers are! Not that I get all that many hits on this site, but I certainly get more hits than I have regular commenters, so I'm sure there are quite a few of you out there who visit from time to time but remain silent, and I'd love to hear from you!

Tuesday, May 12, 2009

Language in Leaps and Bounds

Originally uploaded by sammi's mom
Samantha has been working soooooo hard on her language skills lately, and if nothing else has supported her acceptance into ESY, this sure does! She is at such a crucial breakthrough point right now, and although we work with her all the time at home, having structured speech therapy and school sessions will really boost her emerging skills. Since she’s been speaking, she’s always pretty much ignored the first letter of each word, or added her own to it, whether it was correct or not (for example, instead of “book”, she’ll say “gook”, “grandma” is “mama”, “grandpa” is “papa”, etc.). But recently, with the assistance of visual/physical prompts, she’s finally getting it! We started to see progress when she would say a word with a closed-lip sound (starting with an “m”, “p” or “b”), accompanied by tapping her lips with her forefinger. We realized that this was something her speech therapist was teaching her (it’s hard, now that she’s older and no longer having therapy in the home, for us to know everything they’re working on—we rarely, if ever, get reports home, unfortunately, and we were always used to having one of us attend her sessions), and she’s adapted it to be a prompt for all words that we’re trying to correct her on. Now, whenever we stress the sound of the first letter in a word to her (regardless of the sound that it makes), she puts her finger to her lips and tries to say it! Yesterday she had us cheering her on as she said, with finger to lips, “Ssssammi!!!” Yay!!!! And yesterday she said “Gamma” and “Gampa.” I’m so proud! I won’t go through all of the words she’s been correcting from her previous versions, as there are too many, but I think school has been stressing it more since we asked them to add it to her IEP. I think I had mentioned this in a previous post, but the school had put that they wanted her to accomplish 2-3 word sentences as one of her goals. That’s all well and good, but not if nobody can understand what she’s saying! So we had them add that they would work with her to say intelligible words. And hence, the explosion. She’s so proud of herself, too, and rightfully so. Now if we could just get past the potty training…

The photos at the top are some pics I took at the playground on Sunday. What a wonderful way to spend Mother’s Day!

Sunday, May 10, 2009

Rock 'n Roll

Rock 'n Roll
Originally uploaded by sammi's mom
This has totally been the week of the amazing yard sale finds. Last weekend was the Ashburn Village community yard sale, where everyone was encouraged to have yard and garage sales at their homes, and people drive around and around looking for great finds. This weekend was the Ashburn Village community yard sale--same idea, different area. So, between the two weeks, I think we spent about $50 and came away with some serious steals. Samantha took to the little electronic keyboard immediately, singing Twinkle, Twinkle Little Star into the microphone like a natural! We also came away with a Little Tykes backyard slide ($3!!), a Kettler tricycle, a Zapf babydoll (wearing a bib that says "Samantha"--how could I resist?) with a 4-poster canopy bed, a couple of electronic toys, including one that teaches phonics, counting, etc., and some stuff for around the house. Great thing about this area is that a lot of the things people put out for yard sales is really good stuff, so this was quite exciting for us. I'm glad we didn't have our own yard sale (we'd already gotten rid of a ton of stuff before we moved) so we could take advantage of everyone else's.

By the way, Happy Mother's Day to everyone! Being a mom is the most special thing in the world to me, and Samantha is the BEST child anyone could ask for. Poop, snot, occasional bad attitude and all. :-)

Thursday, May 7, 2009

ESY, Office Moves and Other Random Stuff

Okay, I officially suck at this regular blog posting thing lately. I want sooooo much to write, but there's never a good time these days. I guess that's a good thing--I'm busy! I think that since we moved and now have the computer in the 3rd bedroom upstairs, I can't just multi-task and blog while watching tv and being social with my husband in the evenings. It becomes a whole separate venture to be on the computer. I seriously need to be doing at least two things at once.

On a more exciting note, my office moved from Tysons to Reston this week. While the move itself was pretty tedious (I assisted in the prep, planning and execution), the commute in the mornings is now soooooo much better with us living in Ashburn instead of Arlington. No more 1 hr. 15 min. drives to get to work--it's now down to about 30 minutes. Whew! And I got several comp days from my boss for my help with the move, which is particularly exciting. Extra vacation time = good. I do feel a bit for the people who had a long commute to the old office and now have an even longer commute to the new office. Eh, who am I kidding? I'm just glad it's not me...LOL

A few weeks ago, we missed an appointment with the geneticist. A real bummer since rescheduling means a 6 month wait, unless they call us in on the waiting list if someone drops off. I think their waiting list is a mile long, but we've gotten in that way once before, and it wasn't so bad since Steve is able to take Samantha at any time if they call. But the thing that had me worried was that we always want to stay on top of Sammi's bloodwork results every 6 months, and that we were due to have her AAI x-ray prescribed. Luckily, when I called the office, the nurse said she would send prescriptions for both the bloodwork and the x-ray, and they both arrived today. For those of you whose children have had the x-ray done at age 3, what does it entail? Does she have to be sedated? Will it be very traumatic? I am thinking I'll take time off work to accompany them.

So, Sammi turns 3 in a few weeks! Where on earth does the time go? My baby turning 3!!!!!! Okay, so we didn't accomplish some of the goals we'd hoped for before this date, such as potty training. Definitely a disappointment. I don't know if we just thought it would happen on its own or not, but I know my mom will read this and say, "I TOLD you, you have to just do it! Take a weekend and just do it!" LOL I know, I know, I know, Mom! :-) Gotta just do it. However, my mom also tells about the time I was potty trained--her mother came over and said, "Why isn't she potty trained yet?", and trained me herself in two days. Mom, be my guest...hehehe. Samantha does sometimes tell us she has to use the potty, and I also just put her on it all the time when I'm home with her. She pees in it pretty much every time we put he on it, but pooping is another story altogether. She's only done it a couple of times over the last few months. At night, when I put her to bed, she gets into bed, curls up with her blankie, then suddenly sits up as I'm about to leave her room and says, "potty!" Seriously? "Potty!" "Are you sure?" "YES!" So, off we go, pulling legs out of 1-piece jammies and keeping wandering, distracted hands off of drawers, hair accessories, toilet paper, etc. so I can set her on the seat. Granted, she usually does go, but we go through this twice at bedtime every night. She's a champion staller.

Okay, I did mention ESY (Extended School Year--the only way she can receive services during the summer break). This morning, we had Samantha's ESY determination meeting at her school. We left the ESY portion of her IEP blank a few weeks ago, with the provision that we would reconvene to discuss her eligibility today. A few weeks ago, they had to deny her ESY eligibility due to the fact that they couldn't prove that she'd regress over the break (she's never had a break like this before!) and they couldn't prove that she was on the edge of any breakthroughs (she's only been in Loudoun Co. schools for a month which wasn't enough time for them to evaluate her--she takes a little while to warm up to the teachers and therapists). I may have mentioned this already. Well, her old Speech and OT therapists in Arlington wrote letters stating that they felt she was at a breakthrough point (speech--she's starting to use 2 and 3 word phrases spontaneously, and is working very, very hard on intelligibility) or would regress due to not completing one of her goals (OT). Speech services were approved immediately, and after some irritating and pointless debating, they reluctantly approved OT. The PT from Arlington never submitted anything, so I'm a bit disappointed that she won't be receiving PT this summer. She's got so much to work on with her gross motor skills. I really, really want her to build her trunk strength so she can navigate playground equipment with the other kids! I'm hoping ESY is the right thing for her. I don't know what the other kids there will be like, but one person had cautioned us that there were often kids with behavioral issues that you wouldn't want your child modeling. We'll see. I'm just glad she'll continue to have services and instruction. She really thrives on routine.

The weather's way too crappy for photos lately. Our back yard looks like a jungle with all the rain, and I think I'm starting to wilt from lack of sunshine. Hopefully the weekend will look up.