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.

He is Risen Indeed!

As this Easter weekend comes to an end, I reflect on the awesome power of the cross and our resurrected Savior, and how that event changed the course of world history! The difference between Christianity and all the other religions out there is that OUR Savior IS resurrected (and theirs is not)! It is far more than a story, or it wouldn't have affected history as it did. It is far more than a story, or I wouldn't be the person I am today! I wouldn't feel compelled to change, grow, love... and I wouldn't have the strength or courage to endure...

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!

Don't Mess With The Mother of a Special Needs Child!

We have been blessed to live in a state that has a 'Katie Beckett' Medicaid clause, called 'TEFRA' here in SC. Basically, it allows families like ours (i.e. Middle Income), who don't meet the low Medicaid income requirements, to apply for Medicaid just for a dependent who meets a certain set of medical requirements (expected life-long, debilitating prognosis...which trisomy 18 certainly meets). This is great news for families that cannot add their child to their own insurance due to 'pre-existing conditions', or for those who have undesireable insurance. We actually have decent insurance already (Blue Cross - Blue Shield), but this helps us supplement the MANY fees BCBS won't pay. It also allows us to apply for medicaid-based waivers to help with care that our primary insurance won't cover!

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.

1. Misinformation
   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.
   
2. 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.
   
3. 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.
   
4. 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

1. 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.
   
2. 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.
   
3. 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

1. 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

1. 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.
   
2. 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.
   
3. Supporting Therapist Documentation:
   PT and Speech Therapists justification regarding the procurement of Assistive Technology for Rebekah.
   
4. 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

APPENDIX A
WAIVER SPECIFICATIONS

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.

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.

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!

APPENDIX C
Equipment

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.

Today is a Gift!

12/5/09

On our way to Ohio Thanksgiving week, the boys were watching Kung Fu panda and the wise old master said "Today is a gift, that is why they call it the present." I changed my facebook status to see if anyone could correctly name the source of that quote and, much to my surprise, it WASN'T the master, it was Eleanor Roosevelt! ;-) It actually comes from a longer poem. But the part I love is:

Yesterday is history.
Tomorrow is a mystery.
Today is a gift.
That is why they call it the present.
- Eleanor Roosevelt

Speaking of gifts, Isaiah had a birthday party last night at a local inflatables place for preschoolers called Giggle Bugs. OK, his birthday was 11/28, but we believe in procrastinating in our house. He had a choice of a party, or a present. He's not stupid, he picked the party so he could have lots of presents!

Anyway, we were all there, including Rebekah. A lady came up to me at one point and asked if I minded telling her about Rebekah. Rebekah was in the car seat in the stroller decked out with her 'cranial remolding orthosis' (Starlight side-opening band helmet), AFO's (ankle-foot orthodic splints - Jump Start Bunny in pink, of course), and, of course, her trach with the big old HME sticking out. She normally draws looks with just the trach, but today, she looked like a space cadet on a moon walk mission! (Couldn't resist the pun on inflatables/moon walks) :-) So I spent a few minutes telling her Rebekah's story and gave her my blog link so she could keep up with her. (Not that my blog is current, but I guess that will be my New Year's resolution! Then again... maybe not.) She asked me if I minded the looks (stares) and questions from people about Rebekah and I said that I didn't. I said that it gives me a chance to glorify God for our sweet precious gift, and to educate people on trisomy 18. (I don't expect anyone to feel sorry for us because of Rebekah. We love her so much and do believe she was given to us for a reason. So I really never have an issue with educating people, and I hope it is a door to discussing God with them.)

Later that evening, I relayed the Giggle Bugs conversation with Michael, and he said that when you only expect 24 hours (or less), then every day is a gift! If you recall, Rebekah's beginning was so rough, she stopped breathing before the cord was even cut at birth. The first several months were very, very hard. Today, when we think about Rebekah and all that she has already overcome, we certainly believe with all of our hearts that each day with her is a gift. And that is despite the countless doctor visits, hospital visits, calendar/lifestyle changes... (You see, when you have a 'medically fragile child', your time is filled up as care-provider and nurse, you leave the house less, invite fewer people over, inevitably miss things because you don't want to bring your child, have less 'me-time', and you can't just have anyone watch them... Lots of people probably really don't think about the massive family changes that result when having a special needs child. The divorce rate for couples with a special needs child is VERY high and scary!) But really, because of where our 'center' is based, this current life has become our new 'norm' and we've adjusted and move on happily - because it is so much better than the alternative!

But the whole conversation really got me thinking...

As much as Rebekah's life has caused what others would see as inconvenience and heartache, we have, indeed, celebrated everyday with her and do not complain because we feel blessed. But what if I applied that concept/behavior to my WHOLE life? I mean, setting Rebekah aside for a minute, what is the focus of my own attitude and view of my personal life?

Well, I don't do such a great job there. I am frequently unhappy with the way things go, stressed out and frustrated, wishing I had this or that, or unhappy with someone else in my life. But WHY? Well, I guess in my mind, I have an expectation that these other events and people in my life will be there for the long haul. So I have 'time' to be mad about it today because I can do something different tomorrow. But the truth is, NONE of us are guaranteed another day!

In fact, my cousin's ex-wife tragically died this past week from a head trauma falling down steps outside her house. She was in her early 30's. Her four year old was with her at the time. I am SURE she didn't wake up that day thinking 'today could be it!' And I don't know about her, but I know that I personally don't live each day like it could be it.

But between her accident and having this gift conversation with Michael, I've been thinking real hard about my attitude of gratitude. There are some people that I am harboring anger towards, there are some personal behaviors I have not been too happy with, and I certainly have not been modeling to my kids the level of gratitude I expect from them! So I am going to try to start each day making this part of my morning prayer - that I would truly believe and live like today is a gift!

This is the day the Lord has made, Let us be glad and rejoice in it.
Psalm 118:24

Each day truly is a blessing and a gift! And I am going to be more committed to living each day like I really believe that statement.

Don't waste your life thinking you'll fix it tomorrow, deal with your hurt tomorrow, get right with God tomorrow. TODAY is the gift. So why don't you join me on the quest to appreciate today for the blessing it is...

Teach us to realize the brevity of life, so that we may grow in wisdom.
Psalm 90:12

Closure

My mother-in-law, Mary, (who is in her 80's) tells me about her friends and a cousin that have experienced a miscarriage or still birth. When we were pregnant with Rebekah, she was very concerned for us because she didn't want us to have the same experience. You see, back then it was extremely common to whisk the baby away before the mother could even lay eyes on the baby. Several of her friends has wishfully stated things like "If only I had gotten to hold my baby.", "If only I at least had a picture." Her cousin, over 50 years ago, had such an experience and, to this day, still cries when she thinks of her baby! She still says, "I never even got to hold him."

Yesterday, another beautiful t-18 angel left this earth. Hope was her name, and she was loved by many. There is a part to Hope's tale that makes me very, very angry. The hospital did not allow her parents to take pictures of her after her birth! Is that not insane? Now, I realize that I am in the USA and Hope was born in South Africa, but the psychology of grievance does not change no matter what country we are in, what socio-economic class we may belong to, what age we are, what race we are... And in order to mentally process 'death', we need closure. Sure, Florisha (the mom) got to see her and hold her, but to not be able to have any keepsakes to take is just plain WRONG! So this left me with a very bitter taste in my mouth going to bed last night.

I did find out today that they are going to let her see and take pictures of Hope tomorrow. But it is still insane that this was not the case yesterday.

It's little things like this that make me really worry about the human race. Are we so far gone, so cold-hearted, that we cannot recognize the beauty and wonder in each of God's creations? We are all fearfully and wonderfully made - whether 'perfect' or 'imperfect', and each has a place and purpose on this earth. No MAN should make a determination of the value of any given life. It is not our place to do this.

Grins & Giggles

Three weeks ago, our SC Community Long Term Waiver was finally approved for 30 hours of nursing care per week! Life is finally getting back to a more 'normal' basis AND I now have another person here devoted to nothing but Rebekah's care and well-being! Her nurse, Becky, has been a godsend, and she is doing a fantastic job of working with Rebekah on all of her therapies. Rebekah is getting so much more one-on-one help and has progressed so much in just the last three weeks!

Just one of the areas Rebekah has really blossomed in is her response to things. Before, we had to work super hard to get even a little smile out of her. She is now grinning and giggling at people, things, her brothers getting yelled at (no kidding - she smiles everytime they get in trouble!), she will follow us with her gaze, smile at someone who unexpectedly walks by, and let us know when something tickles her fancy. She is such a happy little baby now, it can't help but make your heart sing praises when you see her!

Here is a video of her. Remember, because of her trach, you cannot hear her. But if you could, I KNOW you would hear laughter!


We are so blessed to be able to experience this! Everyone in our house is now full of grins & giggles too. :-)

Please take a moment on youtube to rate the video and leave a comment so that others traveling this road will find Rebekah's video on a search and will have some positive things to find when looking for trisomy 18 or t-18 resources. (You can get to the youtube video by selecting the blog title - Grins & Giggles.)

A Different Dream for My Child

It's been an incredibly draining 6 month roller coaster ride. We have been in the hospital 3 times now, and may be looking at a fourth time as sweet Rebekah seems to be getting sick again. I am not sure I am ready for this again.

I was in a Christian bookstore today with my friend Mindy looking for a Bible study to do. I came across a book called A Different Dream for My Child (Meditations for parents of critically or chronically ill children). I haven't even read the first chapter but browsed to the chapter prayer which caught my attention in the bookstore:
"Dear God, my heart is breaking for my child today. My spirit is crished by fear of what lies ahead. I can't find words to pray, Father, so please pray for me. Be near to my child and be near to me today as your word promises."

The Lord is near to the brokenhearted
And saves those who are crushed in spirit.
Psalm 34:18 (NASB)

This is a book I think all of my T-18 Mommy friends need to get too. Also, please visit the author's website for more information, books, and resources! Jolene Philo is a wonderful Christian author!