Putting On My Battle Gear

Rebekah has been sick for well over 11 days now. We went to the pediatrician's office two Saturdays ago to get her checked out. She had upper respiratory illness (URI) symptoms like slightly discolored and thickened mucous, deep cough needed to work the mucous out of her lungs, low grade fever. In the past, we would test for all kinds of URI things (RSV, chest x-ray for pneumonia, MRSA, etc) with negative results and all of her symptoms led to, believe it or not, a urinary tract infection (UTI)!

So she sees this new doctor that Saturday who actually listens to me, but in the process does nothing but cath her to check for a UTI. The results after a 48 hour culture were still negative. So all week we have done nothing but 'manage' it at home with breathing treatments, lots of suctioning, and some extra love.

Smiling for the camera despite not feeling 100%!

Then, last week on Thursday night, she threw up and aspirated (it went right into her trach opening and scared me to death!). Called the doctor Friday morning to request a 'preventative antibiotic', since her risk of pneumonia due to aspiration is high. They said no to the antibiotic.  In treating her like a 'normal' child, they will not prescribe antibito  Good news is, she hasn't gotten worse. Bad news, she's not better either.

Why do I feel that going to any doctor appointment with her is like pulling out the battle gear and putting it on? It feels heavy and oppressive! I am the mom, why do I let these doctors intimidate me and not speak my mind? Why do I accept their answers even though I am questioning inside?  It's kind of funny because I want them to see her / treat her as a 'normal' child...but when she is sick, I want them to remember she is fragile and needs special consideration. Why can't I have it both ways? 

Such is life with our little Rebekah!  Guess it would be too boring any other way...

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the painful road of carrying a trisomy 18 child, and makes those in the medical community question the text books and outdated/skewed statistics about children labeled 'incompatible with life' before they are even born to this world.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!

Web-Based Doctor Referral System for Trisomy Kids

Trisomy 18 and 13 are deemed 'incompatible with life' by the medical community. The statistics are staggering, with only 10% of pregnancies resulting in live births, and the majority of those dying by the median age of 2 weeks. Looks pretty bleak, huh?

But let's consider some FACTS the the statistics hide...

• Many, if not most, of KNOWN trisomy 13/18 (and even 21 - Down's Syndrome) pregnancies are terminated because parents are told how terribly hard it will be to manage a child that is severely affected mentally and physically. These babies are never given a chance - they skew the statistics and make it look like lives that are not 'viable'.
• Most trisomy 13/18 babies, when born, are put on hospice and sent home so that families can enjoy what little time they have with them. Some of this is because of the medical community's push to not extend the 'life' of these incompatible and undesirable children. Some is because parents trust and believe in the doctors and medical community to give us truthful information. Our own Rebekah was put on hospice out of the hospital, not because we didn't want to give her a chance, but because we believed the perpetuated lie that these children are 'incompatible'. It didn't take us long to figure out she was a fighter, and well worth fighting for!
• And the rest of them? Yes, there is a percent that will not make it because of the combination of conditions they have, but many WOULD make it if the medical community would see value in their lives and afford them the same life-saving interventions that 'normal' children with anomalies are given without second thought. Many of my trisomy friend families have actually been denied life-saving operations for their children, even children that have proven they are compatible with life and have lived with their conditions past one year of age.

Out of all the trisomy 13/18 resources out there, there is no good system for helping parents find the medical resources (doctors and hospitals) willing to work with them to help these children. There is an exciting project out there designed to do just that! But it needs YOUR help to get the grant money necessary to fund its inception.

Even if you do not have a trisomy child, PLEASE vote everyday in August for this project. You can vote online once per day, and text once per day. Please help Rebekah and her friends by supporting efforts to bring REAL help to the living kids of trisomy 13/18! Let's work together to show the world that these children should not be labeled statistically as 'incompatible with life'.

They deserve a chance...
and YOUR vote!

Trisomy 13 and Trisomy 18, and related numbered Trisomy Variations.... Families, Friends, Missions of HOPE coming together to VOTE---Have you voted today? If you don't see this link on your Trisomy Support, resources, Please post and share. Bombard them.. We need to win this challenge. DAILY VOTING, by FACEBOOK VOTING and TEXT (Text 101529 to Pepsi at 73774). And if your posts get deleted, then you know this resource you frequent is NOT coming together with the TEAM of Trisomy Sites working together. Then you need to QUESTION WHY? Why would a support organization not want to help all of TRISOMY Families in this way... So keep your eyes open and be aware of those sites that are all SIGNIFICANT in coming together for the common good. Thanks for your support, it is via the SMALL and many creative sites that we have made the most SIGNIFICANT CHANGE in how OUR PRECIOUS CHILDREN ARE SEEN and TREATED! God Bless you ALL in your efforts for our KIDS.

The 'ME' in Moment

I have not posted in two months. It's been busy ans stressful with many doctor visits and diagnoses. Then I just didn't feel like it. Until now...

What I am about to share here is extremely private and soul-bearing. I ask that you read it with a loving, non-judgmental heart, because I feel compelled to share it. These are feelings that I think many trisomy 18 (and other special needs) moms go through. And I know I am strong enough to share in the hopes that it will help someone else on their journey too. My prayer for Rebekah has always been that she would have a definitive purpose in this world to lead others closer to Jesus. So please keep any harsh comments to yourself and use this as a lesson in empathy and love.

I know it’s selfish, I know it’s not logical, and you’ll have to excuse my “me” moment… afterall, where would moMEnt be without 'me' in the middle?

I have always been and am still praising God for the amazing miracle of Rebekah. I am grateful for every day, every moment - even though it is stressful and exhausting. I do not regret her, and I wouldn’t give her up for anything. But I am having a moment of overwhelming helplessness and despair.

I have tried to be strong since her birth, preparing for both the worst and the best to happen. And I don’t think it started to be as draining for me until we got some recent medical assessments that just continue to emphasize what a fragile and short-lived life Rebekah will have, without God’s continuing grace to grant her time with us. Then I went to a recent playdate and saw some ‘normal’ children about Rebekah’s age sitting, walking, talking, playing… And it just hit me – this wave of utter despair and sadness. A grieving for what could’ve (should’ve) been and what will never be. Mourning for the day that will inevitably come, and a mourning for friendships forgotten in this lonely journey. I don't fit in anymore. There isn't a comfortable place for me.

And Lord knows, I have tried to lean on Jesus through this experience! Let’s face it; I can’t really rely on anyone else anyway. My friends of ‘normal’ kids just don’t quite get it, and I am sure they don’t want to listen to conversation after conversation about Rebekah. It might make them feel a little guilty because they have normal, healthy kids. It might make them feel uncomfortable seeing an ‘abnormal’ baby. It might (gasp) make them pity me. Oh no, I don’t need that one! I am right where I am supposed to be and there is a reason and purpose for it. I have no doubt about that. And there are even a few that were so supportive of my pregnancy and situation, but then when she decided to fight to live and we fought to save her, they disappeared into the woodwork also. And because I can't leave the house at a moment's notice, it’s been ‘out of sight, out of mind’, because it’s easier to ignore the relationships in our life that take more effort and energy. Believe me, I KNOW that. At this point, my relationships with anyone take a lot more energy out of me too, more than I think any of you 'normal' moms can ever know or appreciate. It is painful to see ‘normal’ every day and know I cannot have it. It is extremely draining to be strong for everyone around me and ‘pretend’ like life is great. And while I do have a trisomy family on facebook for support, they are busy and stressed too and, unfortunately, most of them are ‘virtual’ friends. At least, I guess, I know who my ‘real’ friends are these days.

Even though we have been faced with a better outcome than we had ever hoped for, it is still life-draining to daily wonder the fate of your child.

• Why can’t I just happy that my daughter is alive?
• Why can’t I just appreciate the services that pay for nursing and equipment?
• Why can’t I acknowledge the blessings in my four healthy adorable boys?
• Why are bitter feelings creeping into my soul, leaving me to feel chewed up and spit out?
• Why does serving others no longer fill me with joy, but leave me with an empty spot in my soul?
• Why am I all of a sudden apathetic about everything, wanting to sleep in and accomplish nothing worthwhile all day long?
• Why do little things people say about me that normally wouldn’t bother me all of a sudden cut to the bone and leave me a crying and self-pitying shell of who I know I really am?
• Why do I sometimes wonder what life would be like if Rebekah hadn’t made it? (Please understand that I absolutely would not want it that way, but these feelings still pop into your head as you play the ‘what-if?’ mental game with yourself.)
• Why, why. why...

So I talked to a few of my virtual friends because I have been feeling so down on myself for these feelings of jealousy, despair, ugliness, and apathy. I was afraid I was abnormal and that God was going to be angry at me for all of these selfish, and, yes, bitter feelings. Maybe he would stop blessing Rebekah because of my moMEnt I am having. I am truly feeling like Job about now, kind of forgotten and left to ‘rot’. Friends that don’t have anything supportive to say, other than it’s me that is the problem. And I know to some extent that may be true.

But I know something else too that was confirmed through conversations with other moms who are going through the same life journey… THIS IS NORMAL! Want to know something else too? It doesn’t matter what anyone else thinks about me and my situation. Despite how it might appear, God IS on my side and there will be a positive outcome to all of this inner turmoil.

Jeremiah 29:11 - For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.

I KNOW there is a plan in all of this and for whatever temporary suffering we go through here on earth. I also know that the Apostle Paul went through some major suffering that bordered on depression. He begged for a different outcome, yet finally succumbed to the Lord’s will.

2 Corinthians 12:7-10 - To keep me from becoming conceited because of these surpassingly great revelations, there was given me a thorn in my flesh, a messenger of Satan, to torment me. Three times I pleaded with the Lord to take it away from me. But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.

So there you have it - I am bearing my soul and sharing my weakness with YOU, who have read this far. My hope for you is that you will be blessed to know that there is a plan and purpose to everything and that God’s grace can cover up our weakness and make us strong.

And for those of you who may fall into the category of old and lost friends, know this… I love you anyway.

Multi-Purpose at a Price That Can't Be Beat!

Homer's Multi-Purpose Paint Bucket from Home Depot - Priced $2.34

We recently made a quick trip to see my brother's family in Atlanta. I needed to give Rebekah a bath, and had not brought her baby bath (which she is almost too big for anyway). My brother and sister-in-law are way pass the baby stage, so no more baby paraphernalia to borrow during visits. And because of Rebekah's trach and not being able to sit up, I didn't want to use the regular bathtub. So I borrowed my brother's 'Home Depot Multi-Purpose Paint Bucket' and used it as a bath. After all, isn't there some sort of fancy-schmancy fad-tub out there that resembles an over-priced bucket?

Rebekah just got put into the bucket, and didn't know what to think about it.

Her head didn't reach to the top of the bucket, so I think she was overwhelmed by 'orange'.

But as I started to dump some water in, she looked down and gleefully eyed the water.

Then she tried putting her hands in the water. (I wasn't quick enough with the camera.)

All clean and ready to get dressed!

All-in-all, I'd give the Home Depot Multi-Purpose Bucket 4.5 out of 5 stars for multi-purposefulness at a price you can't beat. Could I shave a few inches off the height so Rebekah might see better over the top of the bucket, and choose a different color, I would gladly change my rating to 5. Now, as for the $43 Spa Baby European Style Tub...save your money!

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.

Timmy's Tasty Treats to Topple Trisomy 18

For Timmy

My T-18 Family friend, Stefanie Hilarczyk, had put together a fantastic collection of recipes in order to raise money for the Trisomy 18 Foundation and to help raise awareness of Trisomy 18. The cookbook is in honor of her nephew, Timmy, who has a mosaic form of triosmy 18. It is called Timmy's Tasty Treats to Topple Trisomy 18, and I know they're tasty, because I submitted several yummy recipes myself!! :-)

Rebekah (along with several of her T-18 friends) is featured in the informational video introducing the cookbook, so check it out! She was about 6 months in that picture.

Pre-sales are going on right now for the cookbook. So please help support this cause and get some tasty treats along the way!

Cooks cost $25 + $5 S&H ($30 total). They are $10 S&H ($35 total) for overseas orders. Just Paypal Stefanie at thilarczyk@optonline.net. Be sure to send her your address with the order! The cookbooks will be in her hands by June 2nd, and she will ship them out as soon as they arrive.

Thank you for supporting the trisomy 18 cause!

Milestone(s) I Never Thought Would Come...

Today we celebrate probably the biggest milestone of Rebekah's life... her FIRST birthday!! Praise the Lord!

I tried to submit a birthday announcement to our local newspaper a few weeks ago, but they no longer do birthday ads. So I submitted a birthday celebration announcement to their online website as a community event. I was called a few days later by a reporter that wanted to do a special interest story on Rebekah! That story will, I believe, run in todays The Greenville News paper! I have no idea what the final story will say/include...but hopefully it will be a story of inspiration, God's grace, faith and miracles!

So, on Saturday, 4/17, we celebrated with over 200 people and with 3 other trisomy 18 friends!! What an incredible day! And Michael, during his speech, reminded everyone of several important things that have happened along the way. When Rebekah's condition at 19 weeks gestational age was confirmed with trisomy 18 through amniocentesis, the first thing we did was pray and give the situation over to God, come what may. On the day of Rebekah's birth, when she had to be bagged several times for failure to breathe and we were being gently pushed to make decisions, our 'decision' on 4/21/09 was that we would keep her alive through the night so that her brothers could meet her in the morning.

But God had a different plan for Rebekah, and instead of carrying out completed funeral plans, Rebekah stabilized and fought for life! She went home from the hospital after one week, and she was really only there for the whole week to establish her feeding (by mouth!) and to get her over some jaundice. We went home and, although she had many episodes of apnea, she continued to eat well and grow.

When she was one month old though, her apnea episodes were getting so frequent, that she had hundreds of 'episodes' in one 24 hour period and maxed out her apnea monitor memory at the same time! (By this time, she had also earned the nickname 'Blue Belle' because she was constantly turning blue during these events when she would stop breathing.) We made the decision to check her into the hospital and run whatever tests needed to be run so that we could definitively know the reason for her life-threatening apnea. This began a month-long process of tests, juggling our schedules and four boys at home, and relying on friends for childcare, meals, help, and praying earnestly that her life would serve a greater purpose.

Before the tests even began, we were lectured to by doctors... "You need to sit down and discuss this situation together and come to an agreement on what you are going to do. Your child is going to need to be trached and on a ventilator. Many parents have been down the path you are going down and, knowing now what they didn't know then, would have made different choices..." The gist of the conversations? Your daughter is incompatible with life. Don't make her suffer by putting her through all kinds of tests and procedures, only to put her on a ventilator for the remainder of her short life.

But after one important test, her sleep apnea test, attitudes changed. Her major issue was obstructive apnea, most likely caused by micrognathia (small lower jaw) but a normal size tongue - something that could be addressed with a tracheostomy until her jaw caught up to her body in growth. And because the problem seemed to be all upper-airway related, ventilation should not be needed. And it wasn't! And while it took a good three months for her body to completely adjust to the tracheostomy, we have never filled-up her apnea monitor memory again!

Yes, Rebekah does have some other health issues and physical anomalies, and we see many specialists. But for the most part, there is nothing that stands out as a life-threatening condition and she has grown from her original 4 pounds, six ounces and 19 inches long to her current size of 16 pounds, 10 ounces and 25 inches long! She is happy and stable. Despite her trach, she is learning to vocalize. Despite severe developmental delays, she is learning to roll and prop sit, reach out and grab toys, hold objects, recognize and appropriately react people and familiar surroundings. She watches us attentively, and follows objects with curiosity and interest. She is, as I like to say, redefining 'incompatibility with life'!

And now, she has beaten those horrid statistics of trisomy 18 children - she has made it to her first birthday!

Although Rebekah's care has been decent, my birthday prayer for her is that doctors and medical professionals will now start agressively treating her as a child full of life, not as a child doomed to die at any minute! It was only this week that we finally got her into a local pediatric ENT to evaluate her trach and ears. Previously, her trach was being managed by pediatric surgery, despite our request time and time again for an ENT that would manage infant tracheostomies. We were told there was no one that would manage it (locally) and no reason to go elsewhere. We were pretty much left to rely on the medical equipment provider's Respiratory Therapist for information on how to manage her trach, and told to come back in a year for the trach evaluation.

Do you know what the ENT said to us when we went in for Rebekah's evaluation with him? "I have never heard of Rebekah's case until now. We handle pediatric trachs all the time, and get referrals from pediatric surgery constantly, for much less complicated issues. With Rebekah's medical history/condition, I do not understand why she was never referred to us. She should've been followed up by an ENT since her tracheostomy." Well, I do not understand either!! And it makes me so angry that Rebekah does not always get treatment that is appropriately aggressive and proactive. And I am so happy to have found this doctor because I know he will do his best to help her and not to hold her back. We asked him point-blank - 'are you willing to manage Rebekah's trach?' His ending comment to us was that he is "very happy to manage Rebekah's care." He has scheduled us to come back for a complete ABR next week, and we will be scheduling an OR visit soon to have her sedated for a complete look at her ears and airway system. This is exactly the kind of proactive care that Rebekah deserves!

So, after a year of ups and downs, hospitals visits, undefined illnesses and lots of drama, I am seeing milestones that I never thought would come!!

1. Rebekah's First Birthday;


2. Media coverage that will hopefully open the door so that we can educate more people (especially the medical community) about trisomy 18/13;


3. A medical specialist happy to take on Rebekah's 'complicated' care in a proactive manner!

What a grand birthday it is! Thank you, Lord, for holding us up through it all and being faithful to provide what we need!

Rebekah's First Birthday Party

Click here to view these pictures larger

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.