Wednesday, April 3, 2013

Worry, Fear, Excitment and Progress

I havent updated in a very long time! But Elizabeth continues to amazing, I am sure no one ever doubted that :)

I think the last time I updated was in October so here is a brief rundown of the past few months:

November: I was gone on active duty with the Navy for 4 days at the beginning and then 20 days at then end of the month.  My first time being away from Elizabeth. It was hard, but of course Matt did awesome taking care of her. Also I ran a 1/2 Marathon in November for Erlanger Children's Foundation, raising money for one of the hosptials that cared so much for her in the beginning. Family and Friends worked a water station in her honor, and promoted Organ Donation Awareness.

December: Right after I returned from active duty, Elizabeth had a seizure. It was 4am and Matt woke me up. Elizabeth still sleeps in our bed due to the oxygen and monitor needs during sleep. He felt her moving/shaking and thank God it woke him up. We were nervous because she seemed to seize for so long, so we called an ambulance. Our first 911 call (and hopefully last) throughout all of her illness! We know that the FILAMIN A mutation can cause her to eventually have seizures but it looks like her blood sugar was the cause for this one. We spent one night inpatient, but it required an IV in her head, due to how quickly they needed to get her blood sugar back up, it was below 20. She has been doing well since. And of course Christmas and then her 3rd Birthday, which were both pretty great. This year she started realizing how to open gifts, so it was nice to see her understanding a little more. We also spent some time at Vanderbilt, Elizabeth had more testing done to look in the airway reconstruction surgery.

 January: After Elizabeth turned 3 she transitioned out of the Early Intervention Services and fell under the County School System. We had multiple meetings and thankfully she was able to stay at Siskin Children's Institute. She transitioned to 5 full days of preschool instead of 3 1/2 days. It was more of a challenge for me than for her :)  Matt and I had our first trip away from Elizabeth together. And we went to Houston, I know of all places to go! I ran in the Houston 1/2 Marathon in honor of Elizabeth and to raise Awareness for Organ Donation. I was lucky to have with me one of her nurses from TCH PICU and the former PR person from LifeGift, who helped me share her story when we were waiting in Texas. It rained the entire time, and the first song on my Ipod when I started running was "Bring on the Rain, by Mercy Me".

 Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings You glory
And I know there'll be days
When this life brings me pain
But if that's what it takes to praise You
Jesus, bring the rain

 It reminded me of when we started waiting for Elizabeth's lungs in Jan 2011, and the way I felt the whole time we were waiting. I learned alot of myself, and my faith during that time and I continue to learn now. Elizabeth is brought me closer to God and sometimes I think maybe thats part of her purpose in my life.

 We are still unsure of what needs to happen and it will be discussed further at our appt in April in Houston. She underwent 3 procedures to check her lungs, airway, and GI system.

February: Nothing major other than her FINAL IVIG infusion for the winter. She was having to spend one day month at the hospital for the infusion after getting labs drawn. She HATED it because of having to get an IV after being stuck for labs. She will continue to get labs drawn and if her IGG level is low or she starts getting sick we will restart the infusion. But we are hoping she wont need them again, at least till winter. She also randomly started using the potty, we are hoping that she will eventually get potty-trained, of course all on "Elizabeth Time"

March: Elizabeth started standing on her own! Another miracle, and its so amazing to see! We are thankful for this blessing and know how hard she has worked and continues to work to make this progress.

April: National Donate Life Month ~ a time to remember the gift of life that was given to Elizabeth and continue to raise awareness for the need for Organ Donors. We encourage EVERYONE to let your family know of your decision, share Elizabeth's story and save someone's life!!

I wont lie, the past few months have been emotionally draining for me. I tend to hold in all the emotions of the past 2 years until... I just can't. I am so thankful for ALL of you who support us, and continue to follow us on this journey. I know everyone else has issues, and problems in their lives as well, but you continue to "be there" for us. You will never know how grateful we are for the prayer, encouragement and love. We are blessed to be chosen to care for and love such a special little girl. She is reminding me daily, to keep the faith and never give up!

1 comment:

  1. becky Jordan4/04/2013 9:02 AM

    I'm so happy for her and for your family. God has truly blessed you all. Your family remain in my prayers. Keep smiling. Love to all of you.