|Smiling for the camera despite not feeling 100%!|
Monday, October 25, 2010
Wednesday, October 20, 2010
Delight yourself in the LORD and he will give you the desires of your heart. -Psalm 37:4This 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the painful road of carrying a trisomy 18 child, and makes those in the medical community question the text books and outdated/skewed statistics about children labeled 'incompatible with life' before they are even born to this world.
- 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.
- 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.
- 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.
Monday, August 9, 2010
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.
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!
Tuesday, July 27, 2010
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.
Tuesday, June 1, 2010
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?
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.
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.
Tuesday, April 27, 2010
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 firstname.lastname@example.org. 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!
Wednesday, April 21, 2010
- Rebekah's First Birthday;
- Media coverage that will hopefully open the door so that we can educate more people (especially the medical community) about trisomy 18/13;
- A medical specialist happy to take on Rebekah's 'complicated' care in a proactive manner!
Monday, April 5, 2010
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"!
Saturday, April 17, 2010
1:45pm - 4:30pm
MPAC Building @ First Baptist Church Simpsonville
East Curtis St & College St
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!
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!
- 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!
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!
Susan, Michael, Elijah, Jeremiah, Isaiah, Josiah & Rebekah
- 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.
Sunday, April 4, 2010
In my own life, 4/21 marks another type of death and resurrection in my life. I was already a born-again believer but this experience has challenged me beyond my head knowledge of Christianity and faith and made me step out where I never would've asked to go. My daughter, Rebekah, was born with full trisomy 18 on 4/21/09 and was not expected to live. But she DID live. And I have been connected to countless others who are on this same journey, and some have had to already suffer the death of their child. In either situation, I have seen time after time the power of prayer and the strength and grace supplied to face this path. The experience has changed my outlook on life. My faith has increased tremendously along with my burden to share Christ with others. He has allowed me to find joy and peace in the midst of suffering, and unleashed a strength in me I never knew I had. Well, that's because it ISN'T my strength, it's from my Lord and Savior, and that is my point. It is so much MORE than a story! And this one point is only one of MANY things I could list as my personal eyewitness testimony to the power of the cross.
So He is Risen, indeed! How gracious and loving our God is and how amazing his grace!
And if this just sounds crazy and you don't have your own 'story' to tell, He is waiting for you to simply reach out and accept His simple and perfect gift of salvation. Then you, too, can realize the power of the cross and a resurrected Savior!
Saturday, February 20, 2010
We were briefly on a state waiver called Community Long Term Care that gave us funding for 32 hours of in-home nursing care per week. We used that while we processed for the SC 'cadillac' of waivers - the MR/RD (Mentally Retarded / Related Disorders) Waiver. This gives help in the area of nursing AND other things like equipment not covered by private or medicaid insurance. The wait list is long because there are only a certain number of slots available, many wait for years to get on this waiver. Because of Rebekah's critical condition when she came home from the hospital last June with her trach and g-tube, she was placed in the number one waiting spot for the waiver. We were ecstatic! We lucked out and end of November, a slot came open. Rebekah started on the MR/RD waiver the beginning of December! We got bumped up to 42 hours of nursing care per month and were waiting until she got a little bigger to start the specialized equipment orders. This was a happy time because it is known that once you are on this waiver, you basically stay on it until you die or willingly give up your slot.
Things were going great in December and January! We got a consistent nurse that we love to fill in the 42 hours per week, and Rebekah gets loving care that frees me up to do more with my boys during the day. Plus Rebekah has progressed so much in the last few months of nursing care since she has one-on-one attention and someone constantly working with her on her therapies.
Just two weeks ago, we received verbal notification that my daughter was losing her MR/RD Waiver spot. Imagine my shock and devastation! I thought we were pretty 'safe'. The reason for her 'forced' disenrollment? Because the nursing care could be covered/paid for by another entity (the CLTC nursing care is through a different government agency), they decided Rebekah wasn't using the waiver services and, as written in their rules, if you haven't used waiver services for 30 days, you can be automatically disenrolled.
Problem is...I cannot find in writing ANYWHERE anything to this decision. And so I wrote up a 56 page dissertation noting every piece of government documentation I could find on the subject.
That's right...DON'T MESS with the Mother of a Special Needs Child! We not only become a nurse along this path, but apparently we become a lawyer too.
Below is the letter and the summary pages noting the documentation verbiage that directly contradicts their decision.
Good news is, once they found out I was appealing the decision, they did put it on 'hold'. We now wait until we hear back...
February 17, 2010
Dr. Beverly Buscemi
Director SC Department of Disability and Special Needs
3440 Harden Street Extension
PO Box 4706
Columbia, SC 29240
RE: Appeal to the Disenrollment of Rebekah Faith Budd from the MR/RD Waiver
Dear Dr. Buscemi,
We had just received the MR/RD waiver on 12/3/2009 for our daughter, Rebekah Faith Budd. Per the documentation and verbal guidance we have received from DDSN, there had been no indicated problems with her enrollment/status. Unfortunately, we received verbal notification on 2/10/2010 from her E.I., Carolyn Craft, that Rebekah is being disenrolled from the MR/RD waiver and must go back to CLTC PDN nursing care. I spent a frantic 2 days calling various state resources trying to understand why and how this could happen since we had not received any warning or guidance that our participation in the waiver was in jeopardy. One of those contacts, Angela Syphertt, instructed that I could send a letter of appeal to you.
We respectfully submit this letter and the attached supporting documentation as an appeal to the decision to disenroll Rebekah Faith Budd from the MR/RD Waiver program, and request that our appeal is accepted in this form as we have not yet received the official notification letter with the official appeal form/process.
Our appeal is based on four important factors.
Unfortunately, in the information that was communicated to us since Rebekah’s enrollment, we were never notified nor personally aware that we were not properly using the waiver. Please see Appendix A for our concerns.
- Need for monthly medical supplies not covered under Blue Cross Blue Shield or Medicaid
There are a number of items that our daughter has gone without for months (even before we received the waiver) because we have been battling with the insurance companies and her DME. But, in an effort to be responsible with these state resources for which we are very grateful, we wanted to be deliberate in the items that we requested under the waiver and take our time to document things thoroughly. Of particular interest is her trach supply. According to the manufacturer of her primary trach type, the trach is only good for 28 days once opened. This poses a bit of a problem since we need at least 2 trachs to rotate per month and two back-up trachs for emergencies, and Medicaid will only cover 10 trachs per year! We have been recycling trachs past the recommended usage while we battled this, not realizing that this could be a requested item under ‘Specialized Medical Equipment, Supplies, and Assistive Technology Services’. There are other items too that our DME has not/will not supply that are necessary to Rebekah’s proper care. Please see attachments C & D for a complete description.
- Need for Specialized Medical Equipment
We had already notified Rebekah’s E.I. that we have started the process to request funds for a high-low extension, car seat, and in-home monitoring device for Rebekah, as she is getting to the size where she needs certain equipment for her continued well-being. (I cannot attach the complete request list as we are still working with a DME to determine the best of two wheel chair systems for Rebekah, but I have the Speech Therapist supporting documentation and will have the Physical Therapist’s supporting documentation very soon. I would be happy to supply all of these if you need it for your appeal decision.) We also just spent $300 out-of-pocket co-pay for Rebekah’s cranial remolding orthosis, not knowing that this might have been an item we could’ve requested under the waiver. As a final request in this area, Rebekah will continue to have the need for specialized medical equipment as she gets older. The waiver will continue to give us the ability to access funds available for children like her in order to continue to meet her equipment needs during her lifetime.
- Other waiver programs inadequately meet Rebekah’s needs
After reviewing with DHHS and DDSN representatives, none of the other waivers, would be able to provide both aspects of our needs – nursing services AND equipment/resources. Her best resource is the MR/RD Waiver and, as a qualifiable participant, we believe she should remain enrolled.
Repercussions to Rebekah’s disenrollement include:
- Probably loss of approximately 25% of Rebekah’s nursing care - If Rebekah were to be taken off the MR/RD waiver, we would lose almost 25% of her nursing care allotment (from 42 to 32 hours), as the CLTC had previously only approved her for 32 hours and we received verbal confirmation from the CLTC case manager, Julia Robison, that that would probably continue to be the case. Anyone who took a look at her nurse’s notes would be able to see that she is a very time-intensive little girl who should receive the maximum number of nursing hours available. In-home Nursing Care is saving thousands of dollars by keeping her out of the hospital.
- Inability for us to provide Rebekah with the equipment she needs as determined by her therapists and doctors, including monthly medical supplies that are necessary for life support (trachs) and her continued health and well-being.
- The necessity for us to restart the painful and long process to reapply for the MR/RD waiver, which seems an unnecessary process for all of us given that her condition is lifelong, not expected to change, and she would still meet the requirements (we would just have to go on the waiting list).
Please see Table 1 for more details on each point.
Thank you very much for your consideration of our appeal. Please do not hesitate to contact either of us if you have any questions at all.
Susan K. Budd - Mother Michael K. Budd - Father
Table 1 – MR/RD Waiver Appeal Supporting Documentation
Appendix A – Waiver Specifications
- Mental Retardation / Related Disabilities Waiver Info Sheet and Services: This was the form given to us when we received waiver services. Nursing Services is clearly indicated on this list. We were in the process of applying for Specialized Medical Equipment, Supplies, and Assistive Technology Services but were never informed that the Nursing Services do not count as a waiver service even though they are clearly listed here.
- 4/09 MR/RD Waiver Manual for Service Coordinators and Early Interventionists – Chapter 7 - Disenrollments: Excerpts
Per the verbiage on this form, we made the assumption that the Nursing Services on the MR/RD Waiver Info Sheet and Services (Appendix A, Attachment 1) were equivalent to receiving services funded through the waiver, so we did not feel an urgent need to request supplies under the Specialized Medical Equipment, Supplies, and Assistive Technology Services.
- 2010 HCBS MR/RD Waiver Application Excerpts Effective 1/10/2010:
Please see Appendix A, Attachment 3 Divider Sheet for a list of highlighted points and the sections of the document being questioned. I cannot find online any documentation supportive of the efforts to have Rebekah disenrolled from the MR/RD Waiver Program.
Appendix B - Nursing
- A Day In The Life of Rebekah:
A look at one day of nursing notes (a THIRD of her day) to see how time-intensive her care is. Please read the notes on the Divider Page discussing the benefits of her MR/RD Waiver nursing services over other options.
Appendix C – Equipment
- Letter of Medical Necessity for Equipment:
This is a medical order and request of items we have been unable to get through Rebekah’s current DME provider, along with the required medical justification.
- Sample of 2010 Medicaid DME Fee Schedule:
This is a sample of the DME Fee Schedule showing that some of Rebekah’s doctor-ordered equipment is not completely covered under her Medicaid plan.
- Supporting Therapist Documentation:
PT and Speech Therapists justification regarding the procurement of Assistive Technology for Rebekah.
- 4/09 MR/RD Waiver Manual Ch 10 for Equipment-Relates Waiver Services Excerpt:
We definitely need equipment that would qualify, but we also have not received enough Service Coordinator assistance in finding a provider who will work with us to procure the insurance denial letters.
cc: Angela Syphertt; Carolyn Craft; Janet Priest
1. MR/RD Waiver Info Sheet and Services
2. April 2009 MR/RD Waiver Manual for Service Coordinators and Early Interventionists – Chapter 7 Disenrollments Excerpts
3. 2010 HCBS MR/RD Waiver Application Excerpts Effective 1/1/2010
APPENDIX A – Attachment 1
MR/RD Waiver Info Sheet and Services
Points of Interest:
• This is the form we received when Rebekah got on the waiver in December 2009.
• Based on this form, she meets participation requirements and none of the termination requirements considering that nursing services is clearly listed as a waiver service.
APPENDIX A – Attachment 2
April 2009 MR/RD Waiver Manual for Service Coordinators and Early Interventionists – Chapter 7 – Disenrollments Excerpts
Points of Interest:
• Page 1 - MR/RD Waiver recipients must be given written notice of disenrollment and appeal process before proceeding with disenrollment (Rebekah does NOT meet one of the reasons not requiring a 10 day notice). We have only received phone calls, yet her waiver participation is placed ‘on hold’.
• Page 1-2 - Rebekah HAS been receiving services funded through the waiver on a weekly basis. Nursing care is not listed as an exception to this in any online documentation or anything we have received.
• Page 7 - We were verbally instructed to pursue a different route of appeal than that listed in Chapter 7.
• Rebekah does not meet the requirements for automatic disenrollment as described in this document.
APPENDIX A – Attachment 3
2010 HCBS MR/RD Waiver Application Excerpts Effective 1/1/2010
Points of Interest:
• Page 1 - Major Changes section still clearly lists Nursing as a waiver service.
• Page 2 - Rebekah STILL meets the ICF-MR level of care criteria (and will continue to meet it). These services are available to people like her and will help us prevent institutionalization.
• Page 3 - Transition plan states that “all current participants will remain appropriate to continue in the MR/RD waiver.” Rebekah was a participant prior to the effective date of this HCBS Waiver Application.
• Page 3 - While the verbiage “the State does not intend to alter the specific service limits to offer exceptions” is intended to apply to participants seeking benefits beyond the waiver, I would argue that it should also mean that the state will not create an exception just to remove a participant that is otherwise meeting all of the enrollment specifications.
• Page 3-4 - The target group is ‘Mental Retardation’ ages 0+. Obviously, the needs of an infant are different than that of a toddler or adult. But the waiver still states that this is applicable to infants too. To remove an infant that will have the same upcoming needs as a current participant a few years older just because they are not ordering a monthly supply of diapers and wipes is a direct contradiction to the target group definition.
• Page 4 - Rebekah DOES receive the minimum number of services (one) in the provision of waiver services (monthly). There is no indication that this minimum number of one cannot be nursing.
• Page 5-6 - We were actually beginning the process to apply for Specialized medical Equipment, Supplies and Assistive Technology when we were told she is being disenrolled. She will most definitely need these services. In addition, I anticipate future Environmental Modification needs and we would absolutely LOVE Respite Care (but were told that this is not available even though it is clearly listed).
• Page 6 - There is no indication that if a user can qualify for CLTC nursing, that they may not receive those services through the MR/RD waiver. Aren’t all MR/RD waiver participants Medicaid eligible and, therefore, qualifiable for nursing through other programs?
• Page 7 – Rebekah definitely has a list of needs that will require assistance under the Specialized Medical Equipment, Supplies, and Assistive Technology Service Specification. Appendix C provides a nice “starter” list of these items.
A Day In The Life of Rebekah – A look at one day of nursing notes, a THIRD of her day, to see how time-intensive her care is.
Points of Interest:
- Rebekah has spent the last week sick with RSV…but she has spent it AT HOME! Why? Because of a combination of her monthly Synagis shots for RSV AND because of in-home nursing care. Were it not for having nursing care, both my husband and I would have to admit Rebekah to the hospital out of sheer exhaustion from her care. While sick, she has had to be suctioned many times and hour around the clock! She spent several days throwing up and needing constant clothing and bed sheet changes. The nurse has been critical to knowing if/when she should be admitted, and being able to care for her at home as much as possible. This has saved everyone THOUSANDS of dollars in medical bills!
- Rebekah was briefly on CLTC –funded nursing before she obtained her MR/RD waiver spot. She received the CLTC nursing care shortly after a week-long hospital visit due to upper respiratory distress. Despite the evidence that her care is time-intensive, they only allotted her 32 hours of nursing care per week (with a maximum of 40 available, with appeal, I presume). We started out on the MR/RD waiver with the maximum 42 hours. This has been a tremendous help to us AND to Rebekah. During the last few months of nursing care, not only were we able to keep her home from the hospital through several illnesses, but she has been making strides towards some milestones because someone can spend the time working with her! What a blessing! Please do not make her go back to CLTC. We will not only lose the equipment waiver options, but we could lose from 120 hours (2 hour difference in hours offered * 52 weeks) to 520 hours (10 hour difference in hours offered * 52 weeks/year) of nursing per year!
1. Letter of Medical Necessity for Equipment
2. Sample of 2010 Medicaid DME Fee Schedule
3. Supporting Therapist Documentation
4. April 2009 MR/RD Waiver Manual Chapter 10 for Equipment-Related Waiver Services Excerpt
APPENDIX C – Attachment 1
Letter of Medical Necessity for Equipment
Points of Interest:
• There are several monthly and one-time needs not covered by insurance or current DME.
• This is, by no means, a complete list of medical equipment needs. This does not include the formal order for one-time adaptive-type equipment needs like wheel chair, bath seat, etc.
• An additional letter with product specifications will most likely be needed by a DME. This is not included.
• Other SC waiver programs will not give us an option to seek help purchasing/procuring the items listed in this letter.
APPENDIX C – Attachment 2
Sample of 2010 Medicaid DME Fee Schedule
Points of Interest:
• This is not an inclusive list, but is simply an example of some of the Medical Necessity letter equipment items clearly not being covered under Medicaid.
APPENDIX C – Attachment 3
Supporting Therapist Documentation
Points of Interest:
• Attached are the Physical Therapist and Speech Therapist assessments regarding the need for equipment. Not included is the Occupational therapist assessment since she was recently assigned a new OT therapist.
• We have already begun the process to procure several pieces of equipment for Rebekah including a wheel chair, high-low extension, bath seat, therapeutic equipment and car seat. We are expecting some insurance denial letters as a result of this process. Once the denial letters are received, we would like to seek out trying to get them under the Specialized Medical Equipment, Supplies and Assistive Technology waiver service.
APPENDIX C – Attachment 4
April 2009 MR/RD Waiver Manual – Chapter 10 for Equipment-Related Waiver Services Excerpt
Points of Interest:
• Page 1 - Rebekah has several items listed on her Letter of Medical Necessity for Equipment that meet the requirement of “Specialized medical equipment, supplies, and assistive technology…includes items necessary for life support, ancillary supplies and equipment necessary to the proper functioning of such items, and durable and non-durable medical equipment not available under State Plan Medicaid.”
• Page 2 - We have not received enough support/help in the area of a Service Coordinator OR DME willing to assist us in initiating the SCDHHS Medicaid Certificate of Medical Necessity Form. We are told to get denial letters from the insurance company but that does not seem to follow the procedure laid out in the manual.