Sun Beams: Holding Hands

Happy New Year!!!

Yes, I know it has been weeks since we rang in the new year, but Rae has had pneumonia and I've been otherwise occupied. This year we decided to spend the evening at our local zoo. From Dec. 14th through the 31st the zoo opened for the first annual "Night of Lights." I have been searching for something we could do as a family and this sounded perfect. Lights were everywhere! We saw...

A Herd of Blue Elephants
(aren't they supposed to be pink?)

Leaping Frogs

A Beastly Gorilla

A Flock of Pink Flamingos

A Fierce Lion

A Stunning Peacock

and Flying Fish

But my favorite display that evening was this...

Rae holding my finger while we walked.

I couldn't imagine a better way to start the new year!

I wish you all a new year filled with all of life's tiny joys!

Sun Beams: Reaching Inchstones

This week during Rae's PT and OT session we had some wonderful examples of progress! She did such a great job and worked so hard to meet these inchstones that I had to run and grab my camera so I could capture it on film (and video of course).

It was a GREAT week and I want to share those moments with you...

Rae showing off some great head control with Ms. Anna!

Rae sitting pretty while watching Sid the Science Kid.

Rae playing with a ball during OT with Ms. Karen.

This is a BIG development and is the first time she has actually played with a ball!

Rae pulling (not racking) pegs from the board and dropping them in a bucket.
This has taken months of work and she just started doing it without prompting this week during OT!

Sitting without support from Ms. Karen.

Weight bearing on her arms (about 70% her, 30% Ms. Anna) and sitting unsupported!

These exciting developments were just what we needed!

Sun Beams: Adventures in Self Feeding

Whenever Rae is given the opportunity to feed herself she usually attacks her food with gusto. Her hands smear whatever culinary delight I tossed together all over her high chair tray (or the restaurant table/floor...don't judge...I don't have to clean up the mess). Self feeding takes great effort on her part. Her fine motor skills are not yet refined and we recently found out she has some swallowing issues. That being said, I have to admit I laugh quite a bit watching her cram asparagus, broccoli, roast beef, chicken and/or noodles into her mouth. So, without further ado I present...

Rae's Adventures in Self Feeding:

This is an earlier video & it was amusing watching her little hands chase blueberries all over her tray.

 We order Chinese and have a girls night with Mimi
whenever Daddy goes away for business,.
This girl loves her lo mein noodles!

Rae may not appear as enthusiastic about eating roast beef, but I assure you
she was mad about it and did not want to stop. We had to take the bun away
because it was creating a gummy mess on the roof of her mouth.

I must admit, I also suffer from some texture issues and having to pick Rae up after

a self feeding session involving buttered noodles is NOT my idea of fun.

See all those slippery noodles piled onto her tummy! Ick! 

They were everywhere including inside her diaper! 

I held her out in front of my body (heaven forbid her greasy body touches my shirt)

and made a b-line to the tub!

This girl loves her asparagus!

While I may not enjoy picking up (shudder) my buttered Lil' Foodie after one of her adventures, 

I know it is one activity she truly enjoys.

Sun Beams: Doing "More": Take 2

After over a year of trying to get Rae to say "more," I am thrilled to share that it has finally happened! She can now ask for "more" during a meal and last night tears gathered in my eyes as she repeatedly tapped her talker, (an iPad).

Rae's iPad, Fisher-Price case, and Apple case.

I have to admit, I am a little surprised how easily she understands what we are asking of her and is responding appropriately (I also feel like Pavlov with his dogs...tap the talker, get a bite). Rae is tapping the "more" button and then resting her hand to the side of her talker, not just laying her hand over the button. She takes pauses between bites allowing time to chew before tapping "more" again (except when Daddy was feeing her a Zinger, then he had to remove the talker to keep her from repeatedly banging "more"). In addition to tapping the "more" button on her talker, she also looks to the spoon or plate of food after hitting "more." This tells me that she is connecting the action (tapping) with the result (food). I don't think there are any words I can use to adequately express the relief I feel at knowing her cognitive skills are working (I've been worried about that for a few months now). This is BIG (encouraging) news in our home!

I made a quick video of Rae using her talker while Daddy was feeding her dinner:

This was all made possible by our friends and family. For Rae's birthday (read about Rae's "Apple" party here), we asked them to consider a monetary gift in lieu of toys or clothes to help us purchase an iPad and an AAC (Augmentative & Alternative Communication*) app. We are so thankful for the gifts Rae received and, as a result of their generosity, Rae can now ask us for "more." We are looking forward to teaching her more words so she can have a voice of her own...a truly priceless gift.

Thank you all so, So, SO MUCH!

*We are currently using the So Much 2 Say app because it allows us the option of using just one card at a time and we can make cards specific to her everyday surroundings & items. As her ability with the talker continues to progress, we will be able to offer more cards.

Sun Beams: Standing Proud!

I haven't posted in awhile because...well...I've been busy and maybe a tad lazy. There was so much going on and so much I want to share that I just didn't know where to start. Unfortunately, I am making this a very short, concise post because we're on vacation starting tomorrow and won't have access to a computer for a few days and while we're gone ALL our computers will be having general maintenance done by our computer guys (BNT Enterprises). So, without further delay.....

Here's some of our most recent good news:

Rae stood! She placed weight on her little feet and stood. She has done this twice this week. I ran around the house looking for my camera, propelled by pure joy, and immediately sent out text messages to friends and family! Here's a pic...

Rae's scoliosis has gotten better and the curve reduced by about 15 degrees! Amen!! If it wasn't better they were going to recommend bracing.

Rae has been consistently prop sitting for 30 seconds or more.

We were approved for Occupational Therapy (OT) to come once a week and met Karen for the first time last Wednesday. She is a ball of energy and a welcomed addition to our care team.

When we get back from our vacation, Daddy is going to put up Rae's new swimming pool and I can't wait. She loves being in the water. Thanks Mimi and G-Boss!

I found a bike trailer on clearance at Target and it was marked 50% off! This was a major score for me because every now and then I feel a little trapped in the house, but the weather here is starting to shift into fall and I can taste freedom from these four walls. Super stoked!

There is so much more I want to share, but time is ticking away and I need to get packed. I hope you all have a wonderful holiday weekend. I know we will!

Sun Beams: Joyful Progress

Here are some wonderful developments that have occurred over the last couple of months:

1. In May, we managed to get our first studio portrait of Rae prop sitting! That is a huge deal and even though she is only able to prop sit for about 20 to 30 seconds I'll take that kind of progress over no progress any day. I can't share the pic, because it isn't mine to share (copyrights), but here's one of my most recent favorites of her sitting up on our couch.

I call it, "Galactic Hair Day."
Rae's hair was in pigtails during the night
and this look was the end result. 

2. Rae has figured out how to "swipe" her Daddy's i-phone while playing her apps. When I ask her to touch the cow she takes her tiny hand, swipes our digital bovine friend, and is rewarded with a loud, "Moooooo!" This enthralls her and clams her when having a complete meltdown. Thank you Steve Jobs and all you wonderful app makers!!

3. She has started standing again! You know how kids stand up (while you hold their waist or arms) and bounce...well Rae quit doing that ages ago. It really bothered us. Then out of no where, we were in my Dad's back yard and I decided to try to stand her up on the rough concrete pad (barefooted) in front of his shop and she did it! I was shocked. I really didn't think she'd put her feet down. She has since done it once more and we're hoping this continues.

Rae standing proud.
She decided she was finished right after Daddy took this picture.

4. After months of searching, I have stumbled across a sippy cup that she will (and can) use! It is a 5 ounce Tommee Tippee cup with handles. She can chew the spout till her heart is content (she's tearing her bottle nipples to shreds with her incessant teeth grinding and chewing) and it doesn't leak! Since Rae's arms are so weak any cup without handles is difficult for her to manipulate and thanks to this sippy cup I can happily bid our bottles farewell!

Rae's newest sippy cup by Tommee Tippee.

5. We've been working with Rae on closing her lips over a spoon and pulling her food off on her own instead of us pulling the spoon up thus wiping the food off into her mouth. It takes great restraint to not do it for her (especially when we need to finish so we can go somewhere), but it is for the best. I'm happy to say that all the effort has paid off. She is pulling food off her own spoon! Now we get to work on getting her to use her tongue to lick food from the sides of her mouth. Yup, we encourage playing with your food in this house.

I have saved the BEST for last:

6. Rae said, "Da da da," to her Daddy (who has been patiently waiting to hear those words for months) while he was feeding her breakfast. As soon as I heard it, I jerked my head in their direction and asked if I just heard that correctly. His beaming smile said it all. Yes, we heard correctly. She said, "Da da da," and that made her Daddy's day. It was the first time she's said those sweet words. I wish I had captured that moment on video, but it was over in the blink of an eye. We hope to soon hear, "Da da da" again, but for now we wait.

Rae & "Da da da" on Father's Day.

Sun Beams: Walk the Talk

It's been over two weeks since the RAEdiant Striders braved the inevitable downpour and walked for the Epilepsy Foundation on March 31st. A lot has happened in those two and a half weeks which is why this post is late in coming.

The RAEdiant Striders!

First, I'd like to say a big THANK YOU to those that came out to support us. It meant the world to me that you came even though we all knew a torrential rain was heading directly for us. I even cried a little because even though I know we're not alone there are times when I feel like we are and seeing you all gathered there in spite of the weather overwhelmed me with feelings of the support and care you have for us.

Rae was fascinated with the purple balloon.

Secondly, a big THANK YOU to everyone that donated to our walkers. By the end of the weekend we raised $355 for the Florida Epilepsy Foundation. Their grand total for Walk the Talk was $44,986 and we couldn't have done it with out your contributions.

Our little RAEdiant Strollers ready to ride!

Thirdly, a big THANK YOU to those that wanted to be there, but were not able to due to prior commitments or illness. I appreciate that your hearts were with us.

Tuckered out after an exciting long day.

Sun Beams: The New Book

Every once in awhile I stumble across something that I think Rae might enjoy like our recent purchase of a Baby Sniffles Erie. I just can't seem to resist the urge to buy her a toy that she may become enthralled with because she doesn't always act very enthused with other toys like the bouncing Tigger that talks. Seriously, he makes her cry. It's so sad.

Well, the other day, after another doctors appointment (a bad pattern is developing...doctor appointment = toy), I went to a local Once Upon a Child hoping to find a pair of white sandals (my white whale of the moment) and ended up buying a V-Tech nursery rhyme book. Best $3.50 spent...EVER! She LOVES it and I feel like I did a good job.

Yes, my husband was correct...

we are already tired of hearing Ol' McDonald.

Patting her book to hear the puppy bark.

Coming from a parent that tries so hard to solicit a response from my sometimes non-responsive daughter this toy is magical. The book almost never fails to capture her interest, make her laugh and reward me with a grin from ear to ear. It now goes everywhere with us and even her Mimi and G-Boss have been programmed to sing-a-long...B-I-N-G-O!

She was really tired, but had a good grip on her book.

Sun Beams: More Little Victories

We have a couple of exciting developments to share...

Two weeks ago, while reading Goodnight Moon to Rae, I noticed that she started helping me turn the pages, which is a great improvement over trying to eat the pages. I couldn't wait to show her PT.

Then this past week, while my Franklin and his, then girlfriend, Rae (now fiance, Yippie!) were visiting she taught our Rae how to "high-five." This nearly brought me to tears because it's the first hand gesture that she's done and it's been consistent (four days in a row and counting).

I still tear up thinking about those precious "high-fives" and how long I've waited to see her use her hands. We're so grateful for these little victories because they keep us focused on all the progress Rae has made and the progress we know will come in time.

Sun Beams: Little Victories

I've noticed that many of my postings tend to feel a little heavy and focus on the burdens and stresses that weigh on my weary mind. I don't want that to become the primary voice of this blog and would like to take the time to celebrate our Little Victories.

1. On December 19th, while waiting for a transaction to be completed at Verizon, we noticed that Rae held and drank an entire 8 ounce bottle...by HERSELF! That is quite the accomplishment considering we have been working with her for over three months just to get her to drink from a bottle much less hold it on her own. We were thrilled! I even took a picture so I could remember the moment. Yup, I'm one of those Mom's. *Say cheese!*
2. In the last two weeks we have noticed an increase in her rolling over . Of course she isn't always thrilled when she rolls over, but she'll figure out she can roll back over eventually. I never knew rolling over was such an important building block of child development (until Rae didn't do it) and we hope it will soon lead to army crawling...maybe...I'm keeping my fingers crossed.
3. Rae is back to sitting unsupported for longer than a minute! We actually reached just over a minute and a half during her therapy session this week!!  We were up to almost three minutes before Thanksgiving then she grew. Every time she has some growth spurt or feels under the weather she regresses a little. It's like playing chutes and ladders and we keep landing on the dang chute...Whee!
4. She now has 16 teeth and is not afraid to use them! While I know this isn't a gross motor-skill milestone I am glad she has a mouth full of choppers. From the time she was 6 months till she was about 10 months it was the only thing I could really point to as a big "yippie" in our home. Other parents cooed over crawling, cruising, and walking...we had teeth. Beautiful, straight, white teeth.
5. When being held, Rae has started holding onto the shirt of whoever is toting her around. Doesn't sound like much until you've carried 20 pounds of rag doll around for more than five minutes. She's becoming quite heavy and that tiny bit of assistance is more than welcomed.
6. Her find motor skills are progressing nicely as we now have battles over picking the puzzle pieces out of her foam floor mat. I'll come into the living room and the frog no longer has eyes or the helicopter is missing its rotor blades. I swear I'm going to flip it upside down and duct tape it together.
7. She is using her arms and hands as a form of expression/communication more often. Waving them around when she's happy, tapping them on her high chair tray when she wants "more," and every once in awhile she will sorta wave. The best one so far happened while I was singing "Little Bunny Foo-Foo" and she started bouncing her arm up and down along with mine. It was a wonderful moment for me and it hasn't happened since, but that one time was just what I needed.
8. Rae has some sensory issues, for lack of better wording, and for whatever reason soft, furry toys that talk really upset her. For her birthday she received a shake and giggle Elmo from her Aunt & Uncle and (much to my relief) she LOVE's it! Prior to this bright red, giggling, muppet she would pull her arms back, scrunch up her face, whimper, tears gathering in the corner of her blue eyes, and shake in fear of anything furry that made noise. Her fear of talking stuffed animals has been overridden by her love of Elmo. Ahhhh...the power of Elmo! (la-la-lala...)

Some of these Little Victories are spread out over a month or more and that is just part of living in a Hypotonic World. Everything is done at Rae's pace and only she seems to know what speed that pace is set and when we may arrive to our next milestone. We are all just along for the ride, supporting her development, celebrating our Little Victories, and doing the best we can to not let the frustrations overshadow the joys of this journey.