Saturday, July 25, 2015

You have a face for YouTube...

Family Fun

In June, we launched a gofund me campaign to raise money for a wheelchair accessible van. My kids and I have enjoyed the Holderness family video's for awhile. This is the kids "shout out" to the Holderness family asking them to spread the word  about our campaign.


Saturday, June 27, 2015

2014/2015 update

July 2014: Celebrating 6!! This picture says it's been a crazy ride but we are having fun!
August 2014: A day at the beach. Getting some extra minerals in the diet, from the sand...
September 2014: a HUGE milestone Alyssa started kindergarten! As a kindergartner she was eligible to join Girl Scouts. Like her older sister before her, Alyssa became an official Daisy!
October 2014: The school year has been buzzing by...
November 2014: So thankful for a better  year. Alyssa's hair had been getting very long. We decided to cut 16 inches off and donate 13" to Wigs for Kids. Great clips did the cut for free! We should have done a before and after shot. Alyssa's hair had reached down to about her waist and after the cut was just below her ears! A few months after the cut  she received a certificate and because she is a Girl Scout, she also received a patch for her donation.
December 2014: Alyssa's class had a field trip to the mall and she got to sit on Santa's lap. She was so excited.

January 2015: Alyssa was in the hospital for surgery and had an extended stay due to some GI issues. Danielle, one of our favorite Child Life Specialist came by for a visit with some bubbles. The child life program is great. They provide toys, and other distractions for our sick children while in the hospital. The Child Life Specialist program is a great resource for families in the hospital and at home too . 
February 2015: Karen and Rick Santorum have a daughter a few months older than Alyssa, that also has Trisomy 18. They wrote a book, Bella's Gift, sharing their journey as special needs parents. They stopped in our area, so Alyssa, her sisters and I went to Barns & Nobles to get the book signed. Alyssa met and impressed the Santorums' by introducing herself with her talker (push button  device with a recorded voice- provided by her sister). Alyssa was excited to see all the people. Karen and Rick Santorum were very sweet to her.
 Alyssa meeting Karen and Rick Santourum

Alyssa using her talker to introduce herself

 Rick Santorum signing a copy of Bella's Gift, with Alyssa's big sister.
March 2015: Everybody is Irish in March, right? Alyssa with her St. Patty's bow. It was great to see a smile on her face because she had spent the previous six weeks home with pneumonia. We opted to stay home and teleconference with her doctors because there were so many bugs at the hospital that we didn't want to expose her  to anything else.

April 2015: Alyssa and her siblings did our annul Easter egg hunt.

May 2015: Alyssa participated in the Special Olympics for the first time. She raced against another student in the gait trainer and took home a 1st place ribbon!!
Alyssa is looking forward to turning 7. This year has been the year of fulfilling possibilities. Alyssa began using a gait trainer to learn how to walk. She is successfully taking steps, who knows what this next year may bring!!

Friday, June 26, 2015

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