Archive for March, 2010

We went to our first clinic in December and they set us up with a local place and covered Alyssa’s leg braces, but beyond that they continue to follow up with us. Today was the first follow up. It is an astounding thing to be surrounded by people who are all there because they *want* to help people not because they have to. Each of the Shriners gives their time, talent, and education and does it with a happy heart. There are the lovely Shriner’s clowns and just an overall positive atmosphere. The wait times are a bit …ok a lot… longer than a typical doctor’s appointment. However, the wait is worth it.

In December Alyssa was still very squarely in her phase of being terrified of anyone with a hat…which made a trip to the Shriners… well… interesting ;). This time she did quite a bit better. She even did well with the clowns. Well, mostly did well with the clowns. One of the clowns asked me what was ailing her and I said “It’s a disorder called IP.” To which he replied “Oh, what does IP stand for?” … I chuckled a bit and replied “Incontinentia Pigmenti…. yeah… IP” and he laughed out of nowhere and scared her. So, she cried for a bit but luckily the woman who set us up back in December recognized her and came over with a book to distract her.

We played for a while and the most endearing little girl was talking to Alyssa… in Spanish πŸ™‚ . It’s amazing to me how a smile can cross all language barriers. The little girl was so kind and gentle and asked me why Alyssa wasn’t talking to her. I explained that she didn’t know how yet. Alyssa had gotten a little kitty balloon from one of the clowns but this little girl had run around and gotten a bunch of balloons. She turned to her mom and said “I have a bunch of balloons. I’m going to give her one.” (in Spanish of course πŸ˜‰ ) She handed Alyssa a balloon with the biggest smile and ooooh the squeal of delight πŸ™‚ .Β  After a bit more play the little girl ran to go hug one of the clowns to get herself a sticker. She saw how entranced Alyssa was with the bright orange sticker….and turned to run back to the clown. When she returned with a second sticker in hand Alyssa was nothing but smiles. It was so astounding to me that one child who didn’t speak and one child who spoke a language that the other rarely hears could communicate so well.

By the end of the afternoon we discovered that Alyssa’s braces fit well and her bones seem to be growing appropriately! Hopefully with some extra physical therapy and working on getting her a gait trainer we’ll be able to get her some more time on her feet. She came home plus a few heart-warming tales, a couple of balloons, and an adorable little tiger. A big huge thank you to the Shriners for all you do πŸ™‚


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As we approach Easter Sunday I thought it would be good to do a recap of one of Alyssa’s weeks. It astounds me how truly blessed we have been with the people who Alyssa spends her days with. I have yet to meet a person at her school who I did not immediately feel at peace with leaving my daughter with. The overall atmosphere of her school is one of joy and excitement for the day… no matter the day. It is just so amazing that so many happy hearts wound up under one roof. I’m doubly grateful for Alyssa’s teacher. She takes the time each day to e-mail me with what is going on…even still! It’s wonderful because her e-mails usually come while Alyssa is napping and then when she gets up we can “talk” about her day.

This week’s theme was Spring and they did some really great activities from making birds nests to dying eggs to going on an egg hunt! Life has a funny way of working out and due to the weather they had to move the hunt inside which allowed Alyssa to army crawl and find her own eggs. She was so cute when she came home today with her Easter bucket and eggs. She beamed with pride as I asked her about them. The day that they dyed them she managed to grab the green dye…yeah she is THAT quick! Ha! Her little fingernails are still a bit green and it makes me smile each time I notice it! I’m just so proud of her for getting involved and so thankful that she’s with people who figure out how to involve her without making it feel like a burden for a moment!

Easter Eggs

Even though the week was filled with lots of “bonus” activities she didn’t get to escape the norm! She’s begun wiggling her little body to the songs when they play in addition to her clapping. I love that 1) She is doing something a bit new and different each day and 2) Her teacher is so attentive and excited about it! How great is that?!Β  Alyssa is starting to vocalize a bit in speech but isn’t forming real words for Mrs. C yet. However, she does follow direction pretty well. With occupational therapy this week she worked on the balance ball reaching and stretching for toys. Wednesdays are usually her busiest day of the week but they keep her plate pretty full everyday!

One thing they did this week outside was color with chalk. They brought out Alyssa’s tray and gave her a chalkboard which they assisted her in coloring on. A couple of the Kinder kids came over to ask what was wrong. I adore the fact that Mrs. L sees it as a teaching situation and an opportunity for everyone involved to learn a bit of compassion. When I went to class on St. Paddy’s day a different class was out and a couple of the kids gathered around until one was brave enough to ask. I simply told him “Oh, nothing happened. Her muscles just aren’t quite as strong as yours yet.” He simply said “OH!” all relieved and then still stood a bit concerned. I said “Hey, but until then she gets to use this really cool chair!” He smiled and said “It IS cool!” and went back to playing. It amazes me how Kinder-age kids will ask with concern and without judgment. They just want to know why someone is missing out on their “normal.” It’s so hard not to turn into Mama Bear and get defensive but I know that each of them is asking out of genuine concern and empathy and I try so very hard to keep it short, simple, and positive. So far, that is all they need!

Another week down and now it’s onto Spring Break! I’m not letting Alyssa run off to Cancun just yet πŸ˜‰ . However, we are heading down to Laughlin for Easter weekend with Neil’s parents and grandfather to visit his aunt and uncle. It should be a nice escape and a relaxing time!

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or a carnival at the very least! Ha!

This was the first year that I was really and truly excited about a birthday party for Alyssa. The first year she wound up in the ER the night of the party and the second we kept it low-key. This year? Was maybe the opposite of low-key. LOL! It was a lot of work and something we may never do again. However, Alyssa and all the other kids had an absolute blast! Truth be told… I don’t think the adults suffered too much either. πŸ˜‰

We started with a carnival theme. When Alyssa gets ahold of her venting syringe she cracks it like a whip. Somewhere along the line we began joking about her being the ring master! Well, ideas came together and projects were completed and overall there was a lot of fun to be had! Neil used his artistic talent to make a monkey cutout for the kids to put their faces in. We set up a couple of carnival games and a couple of the older kids ran them. All of the food was carnival themed with hot dogs, nachos, etc. The desserts even stuck to the red, blue, and yellow theme! I made a circus ball piΓ±ata to round out the day.

Heather came early with her girls to help us set up and it was such a life saver (of course she packed her camera too! HA!)! We didn’t think we’d need much help … and then we found out no one was coming to let us in. Luckily my ever so resourceful mother went door-to-door with me and one of my kind neighbors managed to locate a key to the clubhouse. It put as a bit behind schedule but did nothing to put a damper on the day!

Birthday girl!

Taking a swing at her first pinata!

Collecting all the loot!

I said in my last post I love having friends with talent who share their talents. My friend Keri is no exception! She and I went to high school together and met up through Facebook after 10 years of not hearing from each other. Well, she is a face painting balloon twister… and MAN! She is AWESOME! She did Alyssa’s party and was a huge huge hit. Thank you Keri!

Sweet tiger Soph!

Alyssa was not so thrilled about the prospect of having her face painted. However, ever so patient Keri miiiight have bribed her with an oreo to get her to allow her hand to be painted! HA!

LOL! See the Oreo in her left hand!

I love that in that pic you can see Keri’s baby belly! She’s due a few weeks from now! YAY!

Alyssa got some really fabulous gifts! Not the least of which included the funds to get her a Nintendo DSi XL and the tap to talk program (www.taptotalk.com) which I’ll talk about more later. I simply adore the bracelet that she got from a dear friend of mine!

Fancy lady!

Also, what kid can turn down the chance to rock out on a guitar?! or use a toy cell phone?! or toy keys that are actually metal?! or take pictures with a talking camera?! Yeah, she’s pretty much on cloud 9.5!

We were quite pleased with how the party turned out and the fact that even with oodles of kids underfoot everyone was courteous and got along swimmingly! I’m so so grateful for everyone that came or wanted to come! Our little girl is so showered with love every day and it felt good that we were able to give her a tangible day of that πŸ™‚

At the end of the day… she’s still our little monkey!

Hard to believe our little one is three-years old… even still. However, I’m so grateful that she is surrounded by so many people who love her every day! Thanks for coming out to celebrate with us!

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I am so fortunate to be surrounded by people who have so much talent and yet are still generous enough to share their abilities with my family. My friend Heather has the ability to catch Alyssa’s true expressions on film in a way that few people could. I think it’s so easy for photographers to lose sight of who their subject is while trying to capture a “stereotypical” shot. Instead Heather manages to capture so much of what makes Alyssa who she is… in freeze frames that I can look back on forever! πŸ™‚

Standing on her own two feet!

Big smiles!


Loving Mama

Sunlit beauty

Soooo Big!

Jump for joy!

Soooo Happy!

Happy happy lady!

Thank you so much Heather! We are truly grateful that you shared your skills with us πŸ™‚ I appreciate everything you do! With or without a camera in your hand!

If you’d like to contact Heather or see more of her gorgeous work πŸ˜‰ she has a website up at

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A few pictures…

I am without words tonight… or perhaps with too many. I have a lot on my mind that I’m having a hard time getting out. Alyssa’s party is this weekend as well so the planning and prepping for that is very much underway. Since I don’t have the words right now… I figure the pictures will help ease the silence until I find my voice again πŸ™‚

I made her St. Paddy’s day outfit this year. Well, to be *completely* honest I bought a white shirt and modified it. LOL. I did make the skirt though!

Alyssa’s teacher got each of the kiddos a green ducky bubble necklace for St. Paddy’s day and sent them home the following day. Alyssa *loved* it. A lot.

This was the first time she was ever really intrigued/interested in bubbles. Usually at playgroup if the bubbles get going she just likes watching the other kids chase them.

This morning we woke up with the intent of going to the nature sanctuary with her teachers and some of the kids from her class. Sadly instead we woke up to the news that there was a 2 alarm fire there that caused approximately 300 birds to perish. Such a somber way to start the day. So, we headed off and got stuff to make primary colored cupcakes for the party. After that we went to meet up with my friend Heather for some big 3-year old pics. Here’s a sneak peek πŸ™‚

She was oh so cooperative πŸ™‚ even standing for brief moments for pics to be snapped πŸ™‚Β  I cannot wait to see the rest. Thanks Heather πŸ™‚ you do amazing work!

With that I’m going to snuggle into bed and plot to have a more upbeat morning tomorrow πŸ™‚

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Soaking up the sun…

even if it’s only peeking between the clouds! Our weather is suffering from serious mood swings. I feel like just when I’m ready to pack up the winter clothes we wake up to a cold and windy day!Β  Today? It snowed! In the desert! IN MARCH! Insanity I tell you. Just. Plain. Crazy! We didn’t get snow at our house but it was raining pretty well when Alyssa’s bus got here. I was kind of bummed because I really wanted to take her on a trike ride to the park this afternoon. Luckily when she woke up the weather had brightened up. There was still a chill in the air but not enough to keep us from having some fun!

Alyssa has always cracked me up because she hesitates to do something until she knows she can do it correctly, and then once she does it? She doesn’t stop! The trike has proven to be no exception. I put her on it today and she had progressed from a look of sheer determination a couple days ago to a look of sheer excitement.

She still doesn’t want to hold on all the time but she’s improved immensely in just a few days! She’s also gotten more determined to make it move all by herself!

See the wide open mouth? She was being a total cheeseface so I decided I should snap a couple pics. She was babbling all sternly and trying to make the pedals move. HA! She wanted me to put away the iPhone and push that trike! She managed to ride the whole way to the park! The best part about going to the community park when the weather isn’t optimal is that there is no one on the swings!

I was thinking about the first time I put her on a swing. It was when we visited Colarado in the Fall of 2008. I thought for sure she’d love the swing because she likes to be tossled about. Um. No. She hated it. She even hated it just sitting on my lap. It is just amazing to me that not even two years later she will let me push her a bit higher each time she goes for a swing. My little girl who fussed on the swings…

has now figured out that they are not only safe but also 100% fun! Even sitting on the trike I said “You want to go on the swing?” and her head whipped around and she grinned that same grin. I love it. I love that even if something is a bit scary in the beginning she eventually figures out that new isn’t always bad!

I feel like what took her quite a while to grasp with the swings took no time at all with school.Β  The little girl who fussed her first couple days without me by her sideΒ  now flashes her teachers a huge smile as she comes off the bus. The little girl who cried the first day I put her on the bus now cries if the first bus that comes to the house isn’t hers. We have been so truly blessed in this transition to school. Talk about soaking up the sun! Each school day I feel like we get a bit of extra light in our lives. Her teacher takes time to e-mail me with what happened during the day and it’s been the biggest relief during this transition. I swear every day I read her e-mail and cannot help but smile.

Alyssa has had a stellar first two days of the week. She’s starting to follow a couple random verbal cues during morning yoga. Which is no small feat. In addition, they are working on presenting her with more choices to make throughout the day and have introduced a device to help. They are truly doing an amazing job ofΒ  helping her reach so many goals. I’m just so grateful that she is surrounded by so much positive energy when she enters the walls of that building. Even Monday when we had a rough start to the day she was nothing but smiles when she got off the bus after school.

I am at such a place of peace. It’s so odd for me to think of where I was before her birthday this year. I am so thankful I took the time to pray, to write, and to work through things rather than around them. I think I have let go of so much lately while embracing so much at the same time. I think now I’m doing a good job of holding tight to the things that are important. At the end of the day our lives are filled with everything we need. I get to spend my life with an amazing husband who is a wonderful father to a miraculously joyful little girl. I cannot imagine walking this path with anyone else. Scratch that. I don’t think I would have made it to this point on the path with anyone else. As hard as some days have been I wouldn’t change any of it if I could. I may want to go back and tell my previous self that it will all be OK, but the last three years have made all three of us who we are today. Today? My daughter managed to separate her pointer finger from the rest of her hand. Today? I squealed with delight as it happened and pulled my phone out of my pocket to capture it… and then realized that it wouldn’t have filled my heart with nearly as much joy if it hadn’t taken three years to get there!

I’ll forever be grateful that Alyssa has made me embrace each milestone as a mountain moved. I feel like I have made it through the patch of darkness. There will be another bump in the road eventually, but until then we’ll be working hard to soak up the sun! Whether that sun be the light in the sky or the light that shines from some one else… we’ll work hard to take it all in!

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there’s a way!
That was the theme of today. Alyssa got a tricycle for Christmas (and a helmet too… but that still needs some adapting) and we had grand plans to adapt it to where Alyssa could use it. I’d like to personally thank Kettler trikes for selling a 3 point harness for their trikes. Sure it adds a bit to the price but it still makes them far less spendy than a special needs tricycle. At any rate, our biggest snag was the pedals. I was determined to find a way to make her feet stay in place! We tried a few different things that worked but just didn’t last for very long. Also, they were a bit of a pain because it involved “suiting up” each time we wanted her to ride it. We knew there had to be a better way!
This morning was far prettier than I would have predicted after all the rain last night. I thought it would be fun to try going for a ride. As I headed down I spotted a single sandal from a pair that a friend sent us as hand-me-downs. They were too big so I had put them in the box with the others. However, my lovely three-year old had dumped the box. Ha! A lightbulb went off. The sandals would easily velcro over her leg braces… hmmm. I fastened them to the pedals using elastic so that I could pull them quite tightly. You know what? They ROCKED!!!… and of course so did she!Β  Cait came out with us and she and Alyssa were tearing up the asphalt. It is hard to convince Alyssa to hold onto the handle bars! She just wants to clap LOL!

I still cannot get over what a beautiful morning it was! There was so much rain last night that I had just assumed it would be an icky and gloomy day. Instead it shaped up to be pretty dang fabulous!

I loaded her up on the trike and immediately she lit up. She wanted to check everything out from the wheels, to the pushbar, to the seatbelt. LOL. Once we finally got her past the point of wonderment she was filled with a determination that I love to see. There were a few points when Cait or I would stop pushing and she’d try her darndest to get that trike to move!

I love watching Alyssa react to other kids, and few other kids have as huge of an effect as Cait. Cait has an inherent ability to take kids for exactly who they are. She pushes Alyssa to do her best but differentiates Alyssa’s best from typical three-year old best… in a way that only she can.

I know that one is a little blurry but I love the fact that she’s looking up at Cait with a big ol’ grin. That’s what I mean. I tried to help her hold on and I got the “MOoOOooM I can do this!” glare… gosh… what does she think she is? THREE or something?! When all else failed and Cait simply could not get her to hold on she knelt down and gave her the most endearing pep talk I have ever witnessed!

After that? They were off to the races! Alyssa struggles a bit since her left side is so much stronger than her right. However, she totally doesn’t mind just going in a left turn circle! HA!

Every once in a while she’d need a reminder to hold on…

However, her feet held!! I’m going to do some fine tuning but overall I’m elated with how well the sandals worked as foot holds.

Adding just a little bit more “typical” to our not so typical lives! Sure when I envisioned my three-year old riding a trike it was her running to it, hopping on, and pedalling away. However, I took pause today as I realized that it would have just been “something that happened” instead of something AMAZING! I mean… really? My little girl was rocking a tricycle today. How awesome is that? Even if someone was pushing her it is still a range of motion and muscle-building that will help her in so many other areas!

I know one thing for sure… whether self propelled or helped to pedal…Β  a trike ride is quite tiring for a preschooler πŸ˜‰

She took a little break. It cracked me up. It was maybe 10 seconds and then she was back in the game. However, she didn’t put up a fight at nap time! I see many more trike rides in her future! YAY!

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