Happy 1461 Days of Trisomy 18 Miracles!

Happy 4th birthday to our little miracle girl! In case you are checking your math, it's 1461 days because she lived through 1 leap year! ;-)

Exactly 4 years today, Rebekah Faith Budd was born into this world with Full Trisomy 18. She was never expected to make it to birth, let alone be here 4 glorious years! In fact, we actually had her funeral planned before she was even born. Then she went home on hospice as everyone waited for her to just die.  But, oh, how we like God's plan so much better than the one that we had!

A friend commented to me today that she remembers visiting us in the hospital when our sweet baby was born. She had to leave to get ready for her own daughter's princess birthday party. I told her, "I hope one day my little girl can have a princess party." And she told us that one day she will.  This memory brought tears to my eyes. And we did, her first birthday party was a princess party.

Words cannot explain how awesome it is to celebrate this miraculous 4th birthday... in fact, we've had 1461 miraculous days of  full trisomy 18 living!   God is good!

Here is a look back through time. How she has changed!

Rebekah's Birthday Day - March 21, 2009. She was 4 lb  6 oz.

From the beginning we were surrounded with other trisomy 18 miracles! Here are her local friends: Dawson and Kaylen.

Celebrating Rebekah's 1st birthday along with 3 other trisomy 18 friends! Dawson and Kaylen are in the front row and Natalie is in the back row. 

This is Rebekah around her 2nd birthday. How she loves her family!

Rebekah's 3rd birthday brought more joys.

Rebekah celebrated her 3rd birthday with several more trisomy friends! Here she is with her TFFs. Joey and Lily are about Rebekah's age, and Kaylen is about 12!

March is Trisomy Awareness Month!

Rebekah started out Trisomy Awareness Month with two accomplishments! First, she is one of the featured Toby's Kids on the Passy-Muir company website. Rebekah wears a Passy-Muir Speaking Valve which allows her to talk despite having a trach. She also learned something new and very special. When told, "Give me a kiss!", she will now turn her head toward you and give you a nice, slobbery kiss! Every now and then, she makes really funny fish lips trying, but it is mostly a closed lip peck right now. She will even kiss her stuffed animals!! Her nurse, Becky, got teary-eyed when I showed her.

Rebekah turning her head to give mommy a kiss!

Rebekah and I have have kicked off Trisomy Awareness month by trying to do as much local awareness as possible. My boys' school had Disability Awareness Week this week for the 3rd graders. I took Rebekah into the school and was able to share her story and some information about children with disabilities. Her brother, Jeremiah, was so proud when I brought her around to his classroom! He loved showing off her g-tube and trach, and wanted to talk about the SOFT conference we went to last summer in Chicago and how we will be going to St. Louis this summer for it. (SOFT is Support Organization For Trisomy)

Then this afternoon, we had the privilege of having 6 MUSC (Medical University of South Carolina) 3rd year med students/interns come to our house and meet Rebekah and her friend, Maddy, who has a 2q microdeletion. What a WONDERFUL opportunity to work with future doctors so that they can have more compassion and empathy for disabled patients! This is part of a program to give these future doctors some exposure to the disabled community, since most of their exposure will be with sick patients in a 'hostile' environment. I think these poor students got a little more education than they expected. Thanks to the Budd Zoo, they learned how loud and chaotic a house of 5 kids can be!

Maddy (2q microdeletion) and her Mommy, Alisa

Some of the future doctors!

Two more future doctors (holding Rebekah) in front of Jeremiah and Michelle from our local Family Connections group.  A big thanks to Michelle for getting us signed up for this program! We hope to see many more doctors!

This weekend, I will be hard at work on a trisomy awareness video for the nonprofits I am involved in: Hope for Trisomy 18 and 13 and Trisomy Advocacy Group. I am so excited because our video will have examples of trisomy kids from 2 to 22! Woo hoo!  Make sure you subscribe to our you tube channel so you don't miss it! 

Monday, I am attending a SC Department of Disability and Special Needs (DDSN) Stakeholder Meeting. Even though this isn't directly trisomy-related, it is directly related to services we receive from the state and I go representing Rebekah, and all children like her.

Next Wednesday, Rebekah and I are off to FL to celebrate a Trisomy Awareness gathering of friends, several of whom will be at Disney all week thanks to Make a Wish Foundation. We are praying we will get some media coverage for our event!  I am so excited to spend just a few days hanging out with Rebekah's trisomy friends!

Later this month, I will be working hard on a presentation application to the TASH Annual Conference. TASH is an international leader in disability advocacy fighting for human rights and inclusion for people with significant disabilities and support needs - those more vulnerable to segregation, abuse, neglect, and institutionalization.  If the project gets chosen, Rebekah and I will get a trip to CA in November!

Needless to say, I will be taking a mental break in April, and probably sleeping for a week!

To learn about all kinds of helpful resources for special needs children, and to see some of the beautiful children that span across all trisomies, please visit our facebook page: https://www.facebook.com/TrisomyAdvocacyGroup

A Month To Celebrate!

Delight yourself in the LORD and he will give you the desires of your heart. -Psalm 37:4

This is a fabulous celebratory month for Rebekah!  I needed to share all of these milestones before I forget them!

I pray that this information about Rebekah continues to bring others closer to God, provides hope for those facing the painful road of carrying a trisomy 18 child, and makes those in the medical community question the text books and outdated/skewed statistics about children labeled 'incompatible with life' before they are even born to this world.

Medical/Health-Related Milestones

• 10/21/10 - Rebekah is 18 months old!! Hurray!!
• It has been a little over a year since Rebekah has been admitted to the hospital for an illness! She did get RSV last February, but we managed her care AT HOME. Since then, she has had a few other illnesses, but is getting better and better at fighting them off and recovering quickly. None of them required hospitalization overnight!
• She is becoming more and more stable. Even when she gets a cold, we are only minimally needing oxygen supplements for her.
• Despite her trach and diagnosis of being likely to aspirate, she has NEVER had pneumonia! Also, despite her trach and the advice not to orally feed her, we have been successful at giving therapeutic amounts of food with no signs of aspiration!  In 2011, we will be working on trying to get these feeds up to an amount that will decrease what she received by her g-tube.
• She has been cleared by the cardiologist and only needs annual checkups. The nephrologist has cleared her from the concern of chronic hypertension. She has no pulmonary hypertension and, despite her horseshoe kidney anatomy, her kidneys seem to be functioning properly and doing their job well. Despite her neurological issues, we are still blessed with no seizure activity. Her health is pretty amazing given all of her anomalies.

Developmental Milestones

• Rebekah is rolling from her stomach to back, and back to either side! We think she can roll all the way to her tummy, but she HATES being on her tummy. Just seeing her roll side-to-side is quite an improvement in her mobility! It allows her to scoot around and rotate her body when lying on the floor.
• She is now weight-bearing on her legs!
• She is giving open-mouth baby kisses!
• She plays peekaboo with her eyes by squiting them shut then peeking out behind those long beautiful lashes. She doesn't use her hands much, so we will take the handless form of peekaboo!
• She can sit for about a minute before falling over. She does not have the reflexes to catch herself, which means sitting requires much more balance. We are diligently working on her arm and hands weight-bearing and hoping to see her more actively catch herself in the near future, which will lead to longer and more consistent sitting ability.
• She is developing a sense of humor and finds it amusing to push things off her tray and watch everyone retrieve stuff for her!
• She is developing clear likes and dislikes, showing her opinion, and clearly demonstrating people preferences and stranger anxiety. She is developing a lovely toddler attitude!
• She definitely focuses on people and things she is interested in. She will watch her favorite videos over and over with much intensity.

Other Celebrations

• We have had nursing care for Rebekah for one year now! I attribute her health and development to this!!  Having her Nurse Becky here for her 5 days a week keeps her healthier and gives her a lot more therapy time than I could ever manage on my own with all of our boys!
• When we were expecting Rebekah, we made funeral plans before she was even born. Those plans have been long forgotten, and we actually just went through the process of redoing our wills to plan a future for Rebekah including a trust fund that would protect her from any income and asset assessment that might cause her to lose her Medicaid Tefra benefits. The process of moving from a 'death' to a 'life' view has been amazing.
• Rebekah continues to be a blessing to many and a constant reminder to us that miracles do still happen!   We thank God everyday for the honor of caring for her.
  

While Trisomy 18 may be a diagnosis, it is NOT a prognosis. Each of these children, created like us in the image of God, deserve a chance to love and be loved. Their purpose here on earth is not to become rich and famous, it is to teach us about humanity, compassion, and grace.

This video demonstrates how Rebekah (17 months) interacts with her brother, receiving and giving affection. We captured some of her first 'kisses' in this video - enjoy!

In this video, Rebekah (17 months old) is just starting to initiate weight-bearing on her legs. It kind of surprised us how this behavior all of a sudden emerged. We are in the process of reviewing standers for her and hope to order one soon so she can keep working on this skill!