Look Who's 5!

(cake made by  K.our friend Hannah)

Upon her arrival into this world we called Alyssa a "spitfire". In the five years since her birth she has lived up to her nickname. Alyssa celebrated her 5th birthday 7/15/2013 and it was a low key family celebration. Yea! for normalcy. It was nice to recognize this wonderful milestone with a sense that this is the way it should be and nothing more. God placed Alyssa in our family and she is enriching our lives. At times I observe that others view a special needs child's worth  as being equated to IQ; or future earnings. I'm not going to name any specific conditions; but the perception tends to be "the body is broken but the mind is good," mentality. Therefore a low IQ or little prospects for a hefty net worth equates to little overall worth.  How misguided is that thinking!

Alyssa's impact on her siblings dad, and I is immeasurable. The ripple effect of which is almost as staggering.  Learning how to care for another individual  provides many life lessons; slowing down to take in the many (overlooked) miracles of life fosters appreciation; adapting communication styles- broadening ones receptive skills sharpens ones ability to be attentive and to focus. The practical application of which is lived out daily in our home. What does this really mean? Well some of  our kids have learned to sign (minimal signs that we use with Alyssa) or learned to pick up body language cues as a way to communicate vs. relying on the spoken word. This has helped them at school and made them more observant in our community. It is amazing how much they notice! The positive impact on our family far outweighs the difficult times. It hasn't been a smooth 5 years either. We are in the midst of  some of the hardest weeks. Alyssa has been managing through repetitive hospital admissions this summer due to infections and back surgeries, and is currently in week 3 of this current inpatient stay. Yet even in the difficult times we learn how to persevere, and overcome. We are cultivating strong characters that are seeing first hand God's love and promises. This world is a fallen place and so often the measure of what is worthy is superficial. I don't want to get on a soap box to justify the blessing that Alyssa has been (is) and how she and other kids like her help make the world a better place...I don't need to as it is a truth that is lived out on its own.

As far as changes for our girl.. she is a whopping 33lbs and 35 inches tall (about the size of a two year old). She is sitting up on her own briefly and sits very well supported. Alyssa rolls and moves about on the floor and can crawl with assistance. She stands in her stander and is beginning to weight bare through her legs at a  table for moments at a time. She waves "hi"/"bye", signs thank you, mom, more, enough and eat; says mom/dad/ and no(occasionally). Alyssa loves to babble, clap, and play "I got your nose"- she uses the pincher grasp to nose grab! She also loves, music, singing, toys and the typical stuff of a younger toddler. We hope to have her fitted and into a wheelchair (out of a stroller) by the fall. She has driven short distances on her own in a motorized wheelchair. However safety first and more practice needed for that; so we are opting for a non-motorized chair at the moment.
At the end of last summer she graduated from her crib into a big girls bed. It's a SleepSafe articulating bed ~it is awesome (thanks waiver funding)!  She hosts many sleepovers for her sisters, as they love the bed too. In June 2013 she had her GJ tube removed and replaced with a G-tube. She is tolerating her feeds well, so we may be back to moving forward with increasing her oral intake too. The VEPTR rodding system has proven to be beneficial for Alyssa. Her only hiccup in the last almost 2 years occurring this summer with rod displacement and infection. In spite of this the VEPTR has most certainly helped  to improve Alyssa's quality of life. At some point I am going to do a VEPTR timeline blog and expand on what it has done to her and for her.

Celebrating Alyssa's birthday (and the birthdays of all my kids) heightens for me, the gift(s) the God has given us. We remain hopeful, and thankful because God is faithful always. What a journey these last 5 years have been and we are looking forward to many more birthdays. My birthday wish for our girl...Keep on being a spitfire! We love you all the more for it.

Happy Fifth Birthday Alyssa!!

 

Playing Along

Here's Alyssa sitting in her chair. Patti, her PT brought it to us on Monday. Alyssa's talking in this shot, I was wondering what she was saying. Is it I want a toy?

Nooo, something about her new glasses. You can't tell but these are her new glasses. They aren't bent up like the old ones, so they must feel a little different for her. We just picked them up this morning. Yep that's it! So now I get it, little miss wants to take them off. Do you think she'll do it, knowing I'm watching!
She's doing it, how bold!

OH!, now she's worried about paparazzi???Caught in the act, but the mission is complete! Well how do you like that?

Alyssa is becoming more aware of her glasses. A few months ago, she'd wear them all day without incident. Now we get an hour or so and then she yanks them off. We'll put them on again after a break and the pattern repeats. She tracks better and does more with them on; so we'll play along with her until she tolerates them better.

Here's another shot of us hanging out... I can't believe the SOFT conference is in about a month! As a matter of fact so is Alyssa's birthday. I'm disappointed that we can't make it this year, to the conference. It would have been a great way to memorialize her first year. I also was looking forward to meeting some of our online friends and learning more about the advances in T18 research/treatment. I hope that we can make it next year; with Alyssa in tow! It would be neat to catch up with everyone in person. The mom's I've met on-line.. Marta, Connie and more have been such a help to me in learning the ropes. Cathy, Brenda,...maybe I'll do a make a wish for the girls to get together. A spa day for us gals, and a Bar-b-Q for the men?!? ;-) Wouldn't that be awesome!! Prayers and hugs to you and the girls...so glad Annabel is feeling better and that Brianna's "scare" was only that! Kelly and Carri your girls are inspiring too! Carri can I post some pictures of MaCari? She too cute, not too. Akaiya, Annabel, Alyssa, Brianna, and Macari..the T18 "brat pack"!! ooh I can't forget about May and sweet little Vera! It seems like Alyssa follows Vera's moves closely. Vera has made some incredible milestones in her 15 months..i can only hope it'll be just as good for Alyssa.