Foot Surgery - Finally!

Some of you may recall that we have been trying to pursue foot surgery for Rebekah for some time. In fact, we were all set to travel back and forth to St. Louis last fall to have her feet casted and corrected for rocker bottom feet/vertical talus. However. Rebekah got a bowel obstruction last September and spent 2 weeks in the hospital. Although it resolved itself, we have been leery to travel so far for orthopedic services since she is likely to have another repeat bowel obstruction at some point.

Rebekah's right foot bends outwards to the right. The toe bones all bend to the right. Her toes on both feet look small because they are all webbed from the first joint. Her feet are more than "flat", they are actually convex from an anomaly related to Trisomy 18 called Rocker Bottom feet. 

Another look at her feet from the bottom. you can see the outward curve of the right foot and the bony protrusion on the inside of that right foot. This is due to her talus bone in the foot appearing vertical and diagonal.

Given Rebekah's genetic diagnosis, we have met many obstacles (doctors and support from others) in seeking to fix Rebekah's feet. In fact, there are many people who believe we would just be subjecting our child to unnecessary and senseless surgery and "pain and suffering" because we cannot "fix" trisomy and "everyone knows" she cannot (and will not ever) walk.

You can see the prominence of the heel bone being pulled up. This is the sign of "rocker bottom feet" and results in her heel sticking way out. Shoes do not fit this girl! You can also see the convex action of the foot where it should be concave into an arch. This foot defect causes her weight to be distributed on the inside front right of her foot during weight bearing - a balancing act at best to maintain a standing position, let alone walk.

A shot of Rebekah's bones from the top of her foot. you can see how her right toe bones all curve outwards to the right. This anomaly will NOT be corrected with her surgery as this is bone work. If and when we address this, Rebekah will be much older.

Well, Rebekah didn't read those textbooks and we claim victory over the effects of trisomy in her life. We believe she WILL walk one day, but her feet need to be fixed in order to help her reach this goal. And, while surgery of this nature would be "elective" in that it is not necessary for her health, her foot anomalies create feet that cannot be properly balanced on for walking. Anyone WITHOUT TRISOMY would not be able to walk independently on them. So we choose HOPE and FAITH and will give her every chance to overcome the effects of Trisomy on her body.

Rebekah bright and early at Shriner's waiting for check in.

On Tuesday, May 14, at 6am, Rebekah checked into the Shriner's Children's Hospital in Greenville, SC for surgery on both of her feet. Rebekah was born with "rocker bottom" feet and has some bone anomalies caused by tight tendons and mis-angled bone. This is how the procedure was described: The surgery consists of releasing the heel cord tendon to drop the back of the foot bone down, allowing the foot to be more flat. He right foot will also have the outside tendon released so that it will not pull the foot outwards. A pin will be placed through soft tissue to try to hold some of the mis-angled bones into better alignment. Both feet will be casted up to her thigh for 6 weeks. Then the casts will be removed, the pin taken out, and her foot molded for AFOs (ankle-foot orthodics). Then lower leg casts will be put on for another 3-4 weeks while the AFOs are being made. This is all soft tissue work and no bone work will be done (directly).

Once the surgery began, the doctor discovered that Rebekah's calf muscles on both legs actually extended all the way down to her feet as well, and they were released in addition to the Achilles tendon. On her right foot, two tendons on the outside had to be released (instead of just one) and two pins were placed into her foot (versus one) - one from the back and one from the front - through soft tissue to help hold the foot in proper position.  Her bones in the front of her foot all curve to the right and, unfortunately, none of this soft tissue surgery will correct that. But hopefully the more neutral position of her foot will correct the growth pattern.
 
The surgery was successful. Rebekah spent the night in the hospital and it took a few days to get her back to eating. I have to admit, watching her those few days I was really concerned that maybe we had made the wrong decision. She vomited and would not tolerate anything until we gave up on narcotic pain meds and went with just motrin or tylenol. As soon as we dropped the narcotics, she perked up and started acting like her old self!

Rebekah's pain response causes her whole body to go into a flushing mode. Look at how red her cheeks and arm is.  It was also on her chest and upper legs. 

A closer look at her vasodilation reaction to pain.

Her white casts were overwrapped post-surgery in the color of our choosing. I went with the bright tie-dye/camo colors to match the bright colors that were in all the stores for girl's clothes. :-)  Sitting on Rebekah's lap is a new Build-a-Bear (well, dog). Shriner's has a room with all kinds of build-a-bears and each child after a surgery is allowed to pick out a bear and outfit/accessories. Ours has a princess crown and wand and silver shoes. She has a princess t-shirt on. There weren't any really cute princess dressed that didn't clash with the pink on the poodle.

The casts add a LOT of weight and we are supposed to maintain her feet in an elevated position where the heels do not touch anything in order to minimize pressure sores. Well, let's just say after about a week in the casts, Rebekah got tired of lying in the same position and unable to move. So three weeks into the 6 week full leg cast, she is easily lifting those heavy casts and flinging them all around. She has figured out how to finagle her body back and forth and move across the floor. She is delighting in brutal leg whacks against her family's extremities, and all of us have at least one black and blue mark to show for it!  This girl has to have abs of steel by now!

Please continue to pray with us that her surgery will make a difference on her balance and potential for walking, for the overall success of the surgery once the casts all come off, and for what the future holds for our baby girl.

Rebekah rockin' her multi-colored tie dye/camo casts as she leans into Daddy for some snuggling time.

Quality of Life

Before Rebekah was born, we were told many things about what to expect because of her diagnosis of Trisomy 18. None of them were positive. It went beyond describing her as 'incompatible with life'. At one point when asking how far should we go to help her, we were told to save our money because we have four boys to send to college. When requesting a caesarian section in case of distress, we were told no, that it was too dangerous to me (the mother) and that trying to help a child like Rebekah was not why that person became a doctor. When exploring how best to address Rebekah's early blue spells and apnea and looking at the option of a tracheostomy, we were told that we would regret our decision a year down the road. When asked for an explanation of Rebekah's brain MRI, we were told that Rebekah is noncommunicative and may develop a little bit, but will then start regressing and basically be a vegetable, so we need to stop doing to her and start thinking about how to just make her comfortable.

All of these comments and opinions were based on a false assumption... the assumption that Rebekah's 'quality of life' would be or is poor and that her existence negatively affects our family.

What is 'quality of life'?

• a term used to evaulate the general well-being of individuals (subjective well-being)
• what makes life worth living
• the extent to which people's 'happiness requirements' are met

I like one definition from grdc.org: Quality of Life is the degree to which a person enjoys the important possibilities of his/her life. Possibilities result from the opportunities and limitations each person has in his/her life and reflect the interaction of personal and environmental factors. Enjoyment has two components: the experience of satisfaction and the possession or achievement of some characteristic, as illustrated by the expression: "She enjoys good health." Three major life domains are identified: Being, Belonging, and Becoming.

Rebekah had an appt last week with her Developmental Pediatrician. His name is Dr. Desmond Kelly and he is such a compassionate and understanding doctor.  We updated him on all the new things Rebekah has started doing in the last 6 months.

He had this to say about Rebekah:

• She seems to be genuinely happy.
• She explores her environment.
• She entertains herself.
• She has self-esteem and looks pleased when she accomplishes a task.
• Her highest area of development is her social skills.
• She recognizes and reacts positively to her family.

I said to him, "Wouldn't that constitute a good 'quality of life'?"

His response was agreement. "She obviously loves her family and brings you great joy. That is what it is all about."

How well stated! If only more doctors would look at 'quality of life' with the same view! And if you go back to the definitions of quality of life - I think Rebekah has mastered all the areas from her view: well-being, happiness, being, belonging, becoming, loving. She is, to us, all that God meant her to be. And I would say her quality of life is better than most people in the world. Even more importantly, she makes OUR quality of life better too.

An Unbelievable Appointment...

I had a really bad day today. Today I clearly saw (for the umpteenth time) the gap between a surgeon's scientific view of life and the compassion I want and crave in Rebekah's doctors.

I have been fighting with the neurosurgeon and the orthodics company about doing another 'cranial remolding orthosis' (molding helmet) for Rebekah's progressively flattening head ('severe brachycephaly with flattening'). Most places won't make them past a child's 18th month, and apparently neurosurgeons know everything because I was told it would do her no good (even though her growth is delayed and her fontanels are not all closed yet). In fact, I was told that for him to say a helmet would help her head would be as truthful as for his to say he was pregnant.  Yet I have found online parents that have had helmets for their trisomy two year olds.

I also asked the doctor to review Rebekah's MRI from last summer. I never saw a neurologist to actually get a complete review of the results - only got the written results and discussed them briefly with several of her doctors. The neurosurgeon went through an explanation of how the MRI works and what we were looking at. Basically, Rebekah's whole brain is underdeveloped and has abnormalities. For those who like the medical terminology - she has white matter leucomalacia, delayed myelination patterns, and a thin corpus collosum. She has a lot of extra fluid filling in the gaps where there should be more 'substance' and white matter. The white matter is what is needed to create the neuropathways and help the brain to function normally. You loose white matter over time and this decreases brain function.  There are kids born with only a brain stem and no brain who actually can live - they will eat, sleep, cry and maintain the basic of infant instincts/actions all without having a 'brain' or being able to develop. (Wasn't sure why he brought this up...but that is coming soon!)

So what does this mean for Rebekah? (Per the neurosurgeon...) Increased risk of seizure activity getting progressively worse, global developmental delays that we will be able to make some progress on but, because her brain is 'atrophied', we will get to a point where she will 'regress' and no longer develop. There is 'nothing' I can do to help develop neuropathways or encourage development. Or so says the doctor! (So why have studies showed that the first three years of life are critical for encouraging neuropathway development and early intervention is a national program?!)

I have to keep telling myself that she is the same as she was yesterday and this 'diagnosis' doesn't mean anything. God made the brain so complex and amazing that there is no one on this earth that truly understands everything about it. She has survived two extremely life threatening situations all by the grace of God. He can surely continue to develop her despite what this doctor thinks.

Well, the situation kind of went downhill from there (believe it or not) and I started to understand why he was telling me about the 'brain-stem-only' babies. Although he didn't state this is plain words, I quickly realized that he basically views Rebekah as someone that is nothing more than a basic blob of instincts. In fact, I was told that we need to "plan" the "future care" of Rebekah to make sure that we are not doing "to her" instead of doing "for her". (In other words, interventions and procedures at some point are going 'too far'.)  Even if we have people that said they would take her should something happen to us, they really won't want to once they find out everything that this would require and how 'hard' it is to care for a child like Rebekah. We need to draw a line and decide now how far we would go in her care or we will look back one day and ask ourselves, 'how in the world did we get here? We regret our decisions!'

REALLY?!?!  How would you feel if your child's doctor told you this?

Then I get home and I actually read the 'Summary of Today's Visit' print out that I received from the office. The next to the last sentence reads, "She is nonpurposefully verbalizing, no meaningful interaction."  

I am stunned, and mad, and sad. She spent the appointment crying - not because she was nonpurposefully verbalizing!! She is getting FOUR 2 year molars in simultaneously and every morning she is not dealing with this well. I wouldn't be either! She was communicating LOUD and CLEAR to me. And as for meaningful interaction, all you need to do is look at how her eyes brighten when her brother walks into the room, or how she gets a big grin when her nurse comes to take care of her. I have plenty of phtographic proof of her ability to communicate. Just because she cannot write a medical journal article, or even use spoken words, she communicates frustration, tiredness, happiness, fear, and, most importantly, LOVE. This is NOT a brain dead child - this is a gift for us to understand and learn how to love like Jesus loves, how to have compassion like Jesus had compassion...

What happened to the compassion in the medical community that all we have become is a diagnosis or a medical chart?  I fear for my daughter's future in the hands of physicians with this view... Needless to say, we will not be returning to the neurosurgeon's office.

The VALUE of One Extra Chromosome

Trisomy Awareness Month is coming to an end. There are a lot of thoughts I wanted to share, but I don't get as much time to blog as I used to - which is a good thing! It means I am not in a hospital room somewhere, but living life with my family!


This video from a Trisomy 18 Angel Mom, Katie Weaver, says it all!  It is full of children with trisomy 18, 13, 9, and other similar variations. (Rebekah has a little video blurb at 4:18!)  Katie is also the one who created all of the awesome t-shirt designs on my Trisomy Awareness Month - Online Support post.

How I wish all of the doctors would watch this video! Too many of them consider these children incompatible with life because of an extra chromosome. They assume that these beautiful children will never be of value to society, and therefore can be tossed aside, refused medical care, or terminated before even given a chance.  Bearing them is considered a misfortune, and supporting their life is a burden to society.


The definition of value is relative worth, merit, or importance; or the worth of something in terms of the amount of other things for which it can be exchanged or in terms of some medium of exchange. In today's society, we place value on a person based on how they look, how smart they are, how much money they make, how 'successful' they are, social status, popularity...   


But God has a different definition of value. Genesis 1:7 tells us that God created man in his own image. And Psalm 139 beautifully explains how God sees and knows us, how he created our inmost being, knitting us together in our mother's womb. Your see, God desires for ALL of us to create value in this world. He wants us to make the world just a little bit better than it was when we got here - and the "little bit better" that we create is our true value to the world. God places infinite value upon all people, no matter their race, gender, social status, economic situation, or (dare I say it?) genetic and health disorders!  Our length of time on earth also does not determine our value.  Jesus' ministry only lasted approximately 3.5 years - yet his life changed the course of history, affecting world religions, our calendar, and the lives of those who come to personally know him.


The children in this video (and those like them) add more value to the world than some of the world's most 'successful' people. They teach us unconditional love, they teach us an appreciation for all of the things we take for granted, they teach us about miracles and that scientists and doctors don't know everything and can't explain everything, they draw us closer to God and show us the real 'value' of life!  And the bottom line is, they are also created in the image of God.  If we love our God as we are commanded to do, we will also love those that He loves!

So I choose to see the value in every life, 

and to love those that He loves.

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!

Reflections on the One Year Anniversary of Rebekah's Tracheostomy

Rebekah - June 2, 2009 - Shortly after tracheostomy and g-tube operations.

Rebekah - May 14, 2010 - Playing with the Occupational Therapist

By the time Rebekah was 1 month old, she was having such severe apnea attacks that we nick-named her 'Blue Belle' because she frequently turned blue. In fact, in one 24 hour period, her monitor recorded a total of 384 events and maxed out the memory after just being downloaded! So its really no wonder why she was our Blue Belle.

Despite her apnea, she managed to grow and fight for life - but we were worn out. Finally, in a point of desperation, exhaustion, and hope, we decided 'palliative care' was not enough and we admitted her to the local Children's Hospital. It didn't take long for us to hear more than one conversation with a medical professional that our 'incompatible with life' daughter most likely had central apnea because her brain wasn't functioning properly and, if we continue down the path we were headed, she would end up trached, on a ventilator...a virtual vegetable with no emotions, reactions, awareness. And looking down the road a year from 'now', we would, like so many other parents, regret the decisions we were about to make.

Thankfully we did not listen to those opinions, and we requested a bunch of tests to determine exactly why Rebekah was having so many apnea attacks. She had a CT scan, a bronchoscopy, a sleep study, a swallow study, an MII (stomach acid probe test), all kinds of blood tests and cultures. Surprising all of the doctors, the evidence post-tests pointed to obstructive apnea in her upper airways, most likely caused by her micrognathia (small jaw). Within a two week period of these tests and trying out various solutions to address the obstruction, it was decided the easiest solution to give her the best quality of life outside of the hospital was a tracheostomy. Exactly one year ago on June 2, 2009, Rebekah had this life-saving operation and began the road to 'Redefining Incompatible with Life'! So yes, the doctor was right about the tracheostomy. But the rest of the picture is significantly different.

Was it easy? No, absolutely not. There were a lot of sacrifices across the board in our family. Our children were cared for by friends and church members for a month while Michael or I stayed by Rebekah's side around the clock. When she came home from the hospital, she was extremely fragile and we did not go anywhere or do anything. My kids' had a pretty 'boring' summer with no fun things to do. We didn't venture out very often. I was consumed with the task of caring for Rebekah and their quality time with Mommy and Daddy suffered for many months and into the fall school year.

Was it worth it? Absolutely YES! Despite all of the sacrifices and lack of 'fun', our family learned some very important lessons.

• We make sacrifices daily for the ones we love.
• We stand beside people when they are at their weakest.
• We help those who cannot help themselves.
• We love people (such as those who did not agree with our pursuit of extending Rebekah's life), even when they are unlovable.
• We humbly accept help when we cannot do something alone.
• We get to witness the hand of God at work when we are faithful and loyal to Him.
• Most of all, I think they learned that Mommy and Daddy love them all and would do anything for any one of them, and that EVERY life deserves a chance (even those that do not fall into the category of 'normal').

Rebekah may be extremely delayed, we cannot just get up and go somewhere at a whim anymore, and our family life doesn't fall into the category of 'normal', but here we are a year later with a thriving happy baby that most definitely knows us, loves us, and has an opinion about many things that she is more than happy to share! And, all praise given to God for Rebekah's progress and strength, this summer will restore the memories of fun summer breaks with vacations, visits to family, and lots of activities to fill up weeks on the summer calendar.

It still isn't easy...

• We've had some stressful moments along the way, but adversity can bring family closer together if you are willing to love one another and sacrifice for each other.
• Our family makes choices and decisions based on a love of God, a much deeper understanding of the fragility of life, and believing in the blessing of children. So our choices and decisions do not always follow the mainstream way of thinking. For that, I am often excluded from the crowd.
• I've lost some friends along the way. I'm sure it wasn't on purpose on either side, but when you just can't up and go when you want to, well...people tend to forget about you after awhile. (Out of sight, out of mind...). So I hear from my 'old' friends a lot less and that is jsut a sad fact of life. It does, at times, make me feel very lonely and secluded though, and I may have a momentary pity party for myself. That is, until my four boys come and give me a big hug and Rebekah bestows on my a smile that would melt the coldest of hearts.
• There is always that fear in the back of your mind that the scale will inevitably tip the other way and I will have to eventually face the inevitable. Each week brings more news of T-18 pregnancies that resulted in sadness or sick children that have lost the battle. The statistical evidence glares me in the face daily, and I feel like a momentary lottery winner with my 'long-term survivor'. But the truth is that death is a reality for every single one of us here on earth, because NONE of us are guaranteed another moment. So we need to enjoy each moment we have and fill it with important, purposeful things that we will not regret when we look back on our life.
  

Do I regret the past year and the decisions we've made?
How can I? I have a husband that loves and cherishes me, I have a beautiful family of five kids, I have a support group of t-18 friends that understand the hardships and blessings, and I know more than ever before that my Lord and Savior holds me close and comforts me.

Besides Rebekah redefining incompatible with life, I think I have also redefined me. I think the Lord has opened my eyes a lot in the past year. In general, little things bother me a lot less than they used to. It's not quite so important for my way to be the way things are done. It's not as necessary to get the last word in during a conversation or disagreement. I don't need to impress anyone. It's a lot less important to keep up with the Joneses, or for that matter, even care what they are up to. And I think I can truly love others much better than I could before (or at least understand what that means!).

I am in a good place right now. Our family is in a good place. And it is due to the blessing of raising Rebekah. So a year later, I asolutely do NOT regret any decision we've made or the changes it has brought to our family. We are blessed.

John 1:16 (NIV)
From the fullness of his grace we have all received one blessing after another.

First Birthday Celebration Invitation

On April 17th, we will be throwing a party at our church for Rebekah's first birthday (which is actually 4/21). Because I am budget-conscious and, well, a really bad procrastinator and lazy when it comes to mailing things, I created Rebekah's birthday invitation on facebook about a month ago and never sent the details to any of our dear friends not on facebook! (I do have to admit that I created and sent a picture card invitation to all of her medical community contacts, but that is because I REALLY want them to come and see that our daughter is REBEKAH and not just a TRISOMY 18 statistical number).

But life happens... Rebekah had RSV, then crazy school schedules for the kids, traveling, an ER trip... So I have spent the last 2 hours trying to create a late evite invitation for her party, only to be stumped with limited text description and picture size! UGH!! I am posting the complete invitation here to the blog so I can link to it from the evite. If you see it here, and not in facebook or an evite email, please make sure you go to the evite to RSVP so I have an accurate headcount. And for my family and friends receiving this late - well, that's just me, what can I say! We know you've heard that this event is coming. I love you all and hope you can join us for this celebration, so don't get hung up on a late electronic invitation!

EVITE LINK TO RSVP (but please read all the details below because it doesn't fit on the evite!)

YOU ARE INVITED TO THE BIGGEST BIRTHDAY PARTY OF THE YEAR!
(Well, at least in Simpsonville, SC!)

Rebekah Faith Budd,
born with full Trisomy 18 on 4/21/2009,
is redefining "Incompatible With Life"!

Date:	Saturday, April 17, 2010
Time:	1:45pm - 4:30pm
Location:	MPAC Building @ First Baptist Church Simpsonville
Street:	East Curtis St & College St
City/Town:	Simpsonville, SC

SUMMARY:
Rebekah Faith Budd was diagnosed prenatally with trisomy 18 and never expected to live. (See bottom of this post for more info on trisomy 18). We prayed, with many others, that our little girl would defy the odds and would thrive, but more importantly, that her life would have a greater purpose!

She has now made it to a tremendous milestone - her FIRST BIRTHDAY! This is a day too many families of trisomy 18 kids never get to celebrate. So we want to celebrate BIG and celebrate in honor of all the T-18 kids out there. And we want to hear all of the ways Rebekah has blessed the lives of those around us. So you are invited to celebrate with us, and help us document why these children should be given a chance!

And if you have not met this little bundle of joy yet, you will not want to miss this opportunity to see her and several of her special T-18 friends who will be celebrating with us!

PARTY DETAILS:
Sign In - Please try to arrive between 1:40-2:00 to 'sign-in' for the party! We want to make sure we have an accurate account of who attended!

PROGRAM -
- On-Going Slideshow of Rebekah's 1st year.
- Welcome and opening words
- Rebekah's Story / Testimony
- Update on the World of Trisomy 18
- Introduction of Guests of Honor - several T-18 friends and those from the medical community involved in Rebekah's care who are attending
- A slide show tribute to our T-18 "angel" friends
- A few words from Pastor Randy
- Blessing for Rebekah and her T-18 friends
- Cake and light refreshments served
- Open Mic - an opportunity for anyone to share a few words about how Rebekah's journey has impacted your life. Share a favorite verse, quote or poem relevant to this occassion! For those that cannot attend, we will read off words of encouragement that we have received. This will be taped so that we can show others that these children are worth saving!
- Closing remarks and thank you's
- Balloon Release by all guests attending

GIFTS - YOU'RE PRESENCE IS OUR PRESENT!
Because of Rebekah's trach, g-tube and physical/developmental uniqueness, we will have a Wishing Well in lieu of gifts. This will help us to purchase items specific to her needs, including specialized and therapeutic equipment not covered by insurance. We also want to create information packets for the local medical community to educate them on the current world of trisomy 18.
But please know, your presence is our present! We expect no other gifts. Please just come and celebrate this amazing little girl with us!

RSVP
Please RSVP by April 10th and comment on total guests attending so we can order enough cake!
If you cannot attend and would like to send a birthday card, please send those to:
Rebekah Faith Budd
128 Horsepen Way
Simpsonville, SC 29681

THANK YOU TO EVERYONE FOR SHARING IN THIS VERY SPECIAL EVENT WITH US! WE THANK YOU ALSO FOR YOUR CONTINUED PRAYERS AND SUPPORT!

LOVE,
THE BUDDS
Susan, Michael, Elijah, Jeremiah, Isaiah, Josiah & Rebekah

WEBSITE LINKS:

• FACEBOOK FAN PAGE - I just created a Fan Page for Rebekah. Please become her fan!
• FACEBOOK EVENT PAGE - http://www.facebook.com/#!/event.php?eid=327118879639
• BLOG WEBSITE - http://www.buddzoo.com/
• TRISOMY 18 FOUNDATION - http://www.trisomy18.org
• SOFT (Support Organization for Trisomy 18, 13 and Related Disorders) - http://trisomy.org/

TRISOMY 18 BACKGROUND
Trisomy 18, Edward's Syndrome, is a chromosomal defect in which there is an extra 18th chromosome in every cell of the body. The effects of an extra 18th chromosome are usually a lot more life-threatening with more critical birth defects than that of the more known Trisomy 21 (Down's Syndrome). Because of the prognosis, it is deemed "incompatible with life' and many medical professionals encourage women to terminate their pregnancies early or deny/fail to provide aggressive medical treatments.

Many different statistics are posted regarding life expectancy, but the fact is that most babies die before they are born (statistics say anywhere between 50-90%) and most of those born alive die by 2 weeks old (up to another 50%). Few make it to the milestone of their first birthday, and of those that make it that far, life expectancy remains unknown due to their medically fragile nature.