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!

Why me, Lord?

We got back from a fun weekend of family, candy, fun, and - yes - a little rain for the trick-or-treating activities. Our little Josiah took the stamina prize by outlasting most of his big brothers around the neighborhood. I couldn't believe how far he walked! And he managed to get more candy than his brothers with fewer stops (we were at a slightly slower pace so he did miss a few houses along the way) because of his absolute cuteness. :-)

Our kids: Josiah - the duck (he got a little upset when people called him a chicken, lol!), Isaiah - the Indian (this was a school Thanksgiving concert costume, not even a Halloween costume! But he just didn't want to put anything else on...), Jeremiah - Stitch, Elijah - The Headless Horsemen. My nephews are Ben (football ball, can't remember team) and Nick (the 'Unknown Ghoul' with the red eyes).

Josiah and Rebekah

Rebekah, the pink leopard...

On Sunday, we went to my brother's church in GA so that their small group and a few friends that knew about Rebekah could finally see who they have been praying for for all these months. One lady was actually brought to tears upon the sight of Rebekah and was happy to meet our little miracle.

When we arrived back in SC, Michael and I were talking. He looked at me and said, "Did you ever ask yourself, 'Why me?'" I gave him a quizzical look thinking to myself - oh yeah, every day! But I was thinking about the stress and chaos we have now.

Michael continued, "Did you ever ask yourself 'Why me, Lord? Why have you blessed us with this incredible little girl who can bring a grown women to tears (of joy)?'" Wow! I just love my husband! His optimistic perspective on life has done a lot to change me from a glass-half-empty kind of person to a glass-half-full one.

I agreed with him and thought about this for several days now. Despite the ups and downs and inevitible future that lies before us with a child considered "incompatible with life", we truly are blessed. I do not, and cannot, comprehend why we have been chosen to be her earthly caregivers. And it doesn't really matter either. For she has made me a better person, and I love her beyond words. She has inspired MANY to prayer and care, and has been a blessing to far more people than just us.

So I do ask, "Why me, Lord? I feel so insignificant, so powerless. Why have you blessed ME with this incredible gift? Please, help me to use Rebekah's life to bless others as well. Please use her to bring people closer to you. "

He answers that prayer every day.

Another Holiday, Another Hospital Visit

Rebekah - 140 days old on 9/7/09.

Checking out the mobile in her hospital room.

I hadn't blogged all summer partly because my life with 5 kids (including my lovely special needs sweet baby girl) has been insanely crazy this summer, and partly because I never finished Rebekah's LAST hospital stay story and I did NOT know that you can post entries to blogger and later change the date to rearrange the order of the posts! So I have been waiting for free time that never occurred to finish the June hospital stay story when I could've been blogging all along! Oh well, I'm not really much of a blogger anyway!

So here it is Labor Day weekend and, surprise, we are back in the hospital! Over the last week and a half, Rebekah's mucus secretions have been getting progressively worse and we have had her on oxygen pretty much around the clock. That is not normal, but she didn't have a fever, the secretions were all clear, and there wasn't really an obvious sign of illness.

Sunday morning, Rebekah seemed to be working hard to breathe. Her SATS (on fairly high oxygen for her) had been hovering in the low 90's and I couldn't really get them up. She was being suctioned probably 4-5 times an hour, and at night we were having to suction much more than usual. She used to go pretty much to whole night without suctioning.

I called hospice and asked them to send a nurse to assess her. The supervisor answered and had a preconceived notion that Rebekah's symptoms were related to congestive heart failure. I was confused by this since she got an A from the cardiologist months ago and we were told not to come back! So she sends over a nurse (the on call nurse who had never seen Rebekah before), who listens to Rebekah and agrees that she is working much too bard to breathe. She explained that she heard fluid in Rebekah's lungs and heart and that she probably did have a congested heart. I had to either take her off hospice and take her to the ER, or manage her care at home through hospice care (expecting her to progressively get worse).

My heart, at the point, dropped into my stomach. Worried if we had done something terribly wrong by letting this go all week, I asked how bad she thought it was. She said she didn't think it was too late to reverse it, but that the congestion was probably due to excess fluid, kidney problems, etc. Oh yeah, and the fact that Rebekah has trisomy 18 and that is a common problem. (Think she may have talked to the supervisor and come with a preconceived notion of what she was dealing with?) While she was very nice and professional, she did pretty much end the conversation with telling me that if I take her off hospice to go, I probably will want to switch her back to regular home health care afterwards because those nurses would be in a better position to do blood draws, etc from home. I think I was getting the 'don't come back' speech.

I kicked it into high gear and got her off to the hospital while Michael took the boys to church. We tossed around having all of us go, but it was a good thing that didn't happen because the hospital has prepared for a flu pandemic by not allowing anyone under 18 to visit any of the pediatric floors.

I called the doc on the way to the hospital - got to bypass the ER and met him in the hospital lobby. He discussed her status with the ped floor docs and they decided to admit her to the Pediatric ICU due to her trach and the excessive suctioning requirements. Oh, did I mention that he almsot laughed at the congested heart comment? He said there wasn't anyway to determine if what we were hearing was congested heart because it was too difficult to differentiate the noise from the lungs vs. heart and that it was most likely just the lungs.

Well, a chest x-ray, several blood tests, and multiple other illness tests later, we are still in the hospital without an exact diagnosis (probable virus - just has to run its course), but we do know that it isn't any of the 'big' ones (especially for a trach baby) like pneumonia, flu, rsv, etc.

So now we just wait... hoping she starts to show some improvement so we can move her care to back home.

My baby girl is strong and will get through this just fine. But I really hope we have not started 'another holiday, another hospital visit' trend!

A Little Time For Pampering...and Embarrassment

I FINALLY got the opportunity to use a 40th birthday present (from last October!!) from a great friend of mine. She got me a deluxe manicure and pedicure. Saturday of Labor Day weekend was the first time I truly have had a large enough block of free time (since Oct 08!!) to go and enjoy some pampering, sans kids and hubby.


I upgraded to the french mani & pedi, and decided to throw in a brow wax.


Embarrassing Moment #1 -
I got my eye brows waxed by a cute, thin, young Asian lady. Upon finishing my eyebrows, she said, "You want your lip done too?" Well, my hair is fairly light, so I have never had the area above my upper lip waxed. So I said no. She looked at me and in a very matter-of-fact voice stated, "You need it done."
Ouch! Guess along with being 40 is the realization that I now need my 'mustache' waxed!


Embarrassing Moment #2 -
Saturday night, we went over to a friend's house to hang out around their fire pit on such a great evening. Soon, we were passing the box of mosquito wipes around... you know, the kind that come in a container similar to Clorox wipes or hand wipes. So I pull one out and accidentally pulled a second one almost the whole way out. I decided to shove it back down the little hole. At this point, I shoved a little hard and my beautifully manicured finger goes down past the 'teeth' of the container to hold it there in an uncomfortable lock. I felt like I had put my fingers in one of those Chinese 'finger cuffs' and was feeling pretty stupid. I tried to unobtrusively pull it out, but the painful grimace on my face said it all. So I had to confess my stupidity, and had a ruined french manicure and red hurting finger to show for it.


Of course, it didn't take much longer for at least half my nails to look just as bad. The process of washing your hands 50 times per day, cooking, cleaning, changing diapers, scrubbing toilets, doing laundry... just reminds me of why I haven't had my nails painted in over a year to begin with.


French Manicure?! Well, what's left of it.


The pedicure is still looking good. But Jeremiah thinks I now need to cut my toenails because they are too long. LOL!


My toenails have survived being painted.



Michael helping the boys roast marshmallows.


Chris and Payton



"Mini-Me" Elijah, who can't go anywhere without his laptop. He is so like his Mommy...

Lila Rocks!

Our NILMDTS photographer and friend, Lila Armock, scored another winning photo shoot with the Budd Zoo (despite short attention spans and a short photo shoot window). The pictures were taken at Falls Park in downtown Greenville.

If you live in the Greenville, SC area, be sure to check out Lila's website and set up a photo shoot with her. You won't be disappointed!

Josiah - 2

Josiah

Isaiah - 4

Jeremiah - 6

Elijah - 8

Rebekah - 4 months

This picture captures the personalities of each of my kids!

What sweetness!

Wonder

One of these days, I will finally finish my account of Rebekah's hospital stay. I have it all in a doc, just am not finding the time to get it moved over here and psot with pics. I really want to do this for future T-18 moms so they have something to validate there feelings and get a glimpse into what a t-18 world is like.




In the meantime, I had to post this song. It is incredible. How I love my little Rebekah and she is my "Wonder"...



"Wonder" by Natalie Merchant

Here are the lyrics:

Doctors have come
from distant cities
just to see me
stand over my bed
disbelieving what they're seeing

they say I must be one of the wonders
of god's own creation
and as far as they see they can offer
no explanation

newspapers ask
intimate questions
want confessions
they reach into my head
to steal the glory
of my story

they say I must be one of the wonders
of god's own creation
and as far as they see they can offer
no explanation

I believe
fate smiled and destiny
laughed as she came to my cradle
"know this child will be able"
laughed as my body she lifted
"know this child will be gifted
with love, with patience
and with faith
she'll make her way"

people see me
as a challenge
to your balance
I'm over your heads
how I confound you
and astound you
to know I must be one of the wonders
of god's own creation
and as far as you can see you can offer me no explanation

I believe
fate smiled and destiny
laughed as she came to my cradle
"know this child will be able"
laughed as she came to my mother
"know this child will not suffer"
laughed as my body she lifted
"know this child will be gifted
with love, with patience
and with faith
she'll make her way"

more about "Natalie Merchant - Wonder", posted with vodpod