2013-14 Year Review...

Alyssa had a tough year after her 5th birthday. Towards the end of July, she went in for a revision of her rods, because one rod had become dislodged. The surgery and recovery went well.  Then in August she was back in for her scheduled rod lengthening. Surgery went well, but Alyssa had developed an infection at the site of her rods This required a series of wound vac treatments to help her body to heal. She spent about six weeks in the hospital. It was not easy on her.

September 2013: After weeks in the hospital, Alyssa at home standing (leaning), showing us she will continue to amaze us.  Towards the end of the month, she came down with pneumonia, it slowed her down a bit but she pulled through it.

October 2013: Alyssa still recovering from being sick, dressed up with her friends at Lauren's house. By the time actual Halloween came, she was feeling better and dressed up with her siblings.

November 2013: An uneventful month ( aside from Thanksgiving), which is what we needed. We stayed close to home, Alyssa didn't mind, she got to snuggle all she wanted with her dad.

December 2013: Big girl rolling! Alyssa received her first wheelchair! She looks like a big kid in it. Her little sister wants to get in it all the time too, which means remember to put the brake on so no one rolls away. Alyssa also had surgery this month and all went well (yea!!)

January 2014: Alyssa came down with pneumonia. We attempted to keep her closer to home by taking her to our local hospital. They were not equipped to manage Alyssa's needs, so she was transported to CHOP. She had a lot of fluid build up, so she had an ultrasound of her heart to make sure it was resolving. Thankfully Alyssa returned home a little over a week later.

February 2014: Alyssa returned to the hospital with another respiratory infection, she was home from the last visit about a week. She had a 12 day hospital-stay-cation. By the end she was all smiles, happy to head home!!

March 2013: Alyssa attends a Lauren's House 2 to 3 times a week for about 4 hours in order to receive her therapies and specialized instruction. This is Alyssa showing off, standing nice and tall in her stander.

April 2014: Another sleep study. The rods have helped Alyssa to grow a lot! The "extra" room has given her lungs more room. We've seen changes in her obstructive sleep apnea, so to confirm what we have observed we headed back to the sleep lab. As a result of this study, Alyssa was taken off bi-pap, she no longer required that level of support at night. Even though her apnea improved, she still had significant enough spells to warrant the use of a c-pap nightly. Small steps inthe right direction!

May 2014 Alyssa hanging with her little sister. Again another quiet month and we happily enjoyed it.

June 2014: Alyssa on the cusp of turning six, ended her 5th year with smiles.

...We rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God's love has been poured into our hearts through the Holy Spirit who has been given to us. Romans 5:3-5

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!!