Monday, August 13, 2012

Keeping the FEAR Away!


My husband use to say, “Be careful of what you ask for because you just might get it.”  Well, I feel like I’m about to get something, and I’m not sure what “it” is or if I want it.
Since May 2012, I’ve been trying to figure out where I can take my little girl to get some help for what has become chronic aspiration pneumonia.  While I want help, I’m not sure I’m prepared to go through the steps to get the help.  And if I’ve learned nothing else, I know my plan are pale in comparison to what God has planned.
I’m not distrusting God, but all of the “what ifs” have starting filling my head.  Am I doing the right thing?  What should I be doing?  Is this the right thing?  What if this happens?  What if that happens?  What if they say this?  What if they say that?  What about my other children?  What if I have to stay for a long time?  Will I have a job?  Will I have enough money to take care of our needs?  And the list of “WHAT IFS” go on and on and on.  The Energizer Bunny has nothing on the number of thoughts I’m contending with in my head.
Anyway, I don’t know what tomorrow will bring, but I reaffirm my trust in my personal Lord and Savoir Jesus Christ. My God is awesome, and I know He can do all things EXCEPT fail.  My prayer is for God to strengthen me to endure all that will come next, and for me to recognize that God is still on High!  

Thursday, August 9, 2012

Cincinnati Children's Hospital Visit Confirmed

Baby Sister, my Baby Sister. We confirmed with Cincinnati Hospital today, and we will be taking her there on August 26, 2012. She will have eight test/evaluations done during that week, and prayerfully, they will give us a plan on how to resolve her reoccurring medical problems. We know many people are praying for Eryn, and we appreciate your prayers; however, starting August 26, we will be praying for her every morning at 5:30 a.m. Please join us at this special prayer time. More details will following for a prayer line number so you can pray with up. Matthew 18: 20 For where two or three are gathered together in my name, there am I in the midst of them.

Saturday, August 4, 2012

Baby Sister’s Walk-A-Thon 2012 is History


The 2012, Baby Sister’s Song: EA/TEF Wallk-A-Thon is in the history books; however, I can only report what I’ve heard about the event.  Unfortunately,  I did not attend, even after weeks of planning and prep work to be there.
The morning of July 29, 2012 started off just fine.  My sister and I had worked all night to put the finally touches on Baby Sister’s Song: EA/TEF Walk-A-Thon.  At about 5:00 a.m. we started getting dressed so we could be at the trail by 6:30 a.m. so we would have plenty of time to get everything set up.
Right before I walked out of the door, I woke up Baby Sister aka Eryn.  I checked her out as I usually do, and she seemed ok.  I knew she didn’t feel a 100%, but nothing in her demeanor was alarming.  I had taken out her clothes, and I had asked my oldest daughter to comb her hair and get her dressed so I could go get set-up.  She agreed, and I left home.
I arrived at the WB&A Trail at approximately 6:45 a.m. and was working to unload my van and get the tables set-up for the walkers.  My husband, Frank, arrived shortly after I did, and he too was working to ensure that this day was going to go off without a hitch.
At 7:23 a.m.,  Frank’s mother called him and said they had just called 911.  My husband turned and started running toward his car.  I didn’t know what was going on, but I felt his urgency, and began to run after him.  As he approached his car, and I approached my van, I asked him what was going on.  He told me that his mother had just called 911 for Baby Sister.  I began to move more quickly towards my van, and then my husband told me to get in his car.  Once inside his car, he told me that Baby Sister had stopped breathing.  At first I could not understand him, so I asked again what had happened.   He told me again as he burned up his tires and breaks trying to get out of the parking lot.
He drove like a wild man, and I held on for dear life while I prayed and asked God to please spare my daughter’s life.  To allow her to breath, and not let me find her dead when I returned home.  I also made several calls to my house, my oldest daughter, and mother-in-law, but nobody answered my calls. The chills from my thoughts paralyzed me.  While we made our way to our child, my husband kept checking the time… it’s been two minutes.  Now we are at three minutes.  Oh God, it’s been four minutes., and so on.  We got home to find my family and daughter on the front porch, and Baby Sister was breathing!!! Praise God!!!
Baby Sister was very dazed, but she was alive!  Thankfully, she was alive.  My daughter was crying hysterically and my mother-in-law was still on the telephone with the 911 operator.  My husband took over the telephone call, and my mother-in-law told me what happened.  It seemed like a lot of time had passed and the paramedics would never get to us.  I told my husband to tell them that we were just going to take her to the nearest hospital, but by the time we were at that point, the paramedics arrived.
As the EMT workers began to ask me questions and move us into the ambulance, I realized that I had left my purse, keys and other important information in my van at the trail.  It’s so funny how those things were no longer important.  I could get a new van, purse, keys, money, credit cards, etc., but I had only one Baby Sister, and she was NOT replaceable. 
I also thought about the Walk-A-Thon that I had spent the last 53 days planning, and the thought came and it went.  Either my sister and the volunteers would make it happen, or they wouldn’t, but again, the walk was very insignificant compared to my daughter’s life.  Fortunately, my sister and the other people there got things set up, and Baby Sister;s Song: EA/TEF Walk-A-Thon 2012 took place.  Maybe not as I would have done it, but as it was done, and it went well.  The people who attended reported that the walk was nice, and they enjoyed it and each other’s company.  
As for Baby Sister, she is also doing well after spending most of the week in the hospital.  We still aren’t sure what caused her to stop breathing, but we are grateful that she is fine now.

Thursday, July 26, 2012

Baby Sister's Hat Set By Juskj

Please support Baby Sister's Song: EA/TEF Walk-A-Thon by purchasing a Baby Sister's Hat set by Juskj.  For each Baby Sister's Hat set sold, Juskj will donate $5 to Baby Sister's Song: EA/TEF Awareness.  Check out the link below.





Tuesday, July 24, 2012

Baby Sister Needs Your Support

We are very grateful that Baby Sister is a EA/TEF Survivor!  Yet her song continues... and her challenges have continued causing her to need more specialized medical care.  Since October 2011, Baby Sister has been hospitalized frequently with aspiration pneumonia and has been on 19 different courses of antibiotics and steroids!!!  She is either going on a course of antibiotics and steroids or coming off of a course.  While our family is blessed to have insurance, we have incurred significant out of pocket expenses, and are faced with an even greater expense to get Baby Sister the help that she really needs. 


 In August, we will be taking Baby Sister to Cincinnati Children's Hospital Medical Center for an initial consultation and evaluation that consists of a week's worth of testing.  Baby Sister will be evaluated by an elite team of doctors that are experienced in working with patients with difficult esophageal disorders.  After the initial week, we will be given a treatment plan for Baby Sister and will need to return to Cincinnati Children's Hospital for treatment.  We are excited about the possibilities, and prayerful that she will finally be medically stable and can live a more normal life.


Therefore, we are hosting Baby Sister's EA:TEF Walk-A-Thon, selling speciality items, and promoting other events to raise awareness about Esophageal Atresia and Tracheoesophageal Fistula; and to raise money to off-set anticipated expenses.  Your contribution and support will have a lasting impact on a well deserving life... Baby Sister.

For more information on how to help, please visit http://ShadeNaturals.com/Baby-Sisters-Song/.

Many Thanks in Advance!!!
We are getting down to the wire... Only give days until Baby Sister's Song Walk-A-Thon! Make sure you register athttp://ShadeNaturals.com/Baby-Sisters-Song-Walk-A-Thon/. Thank you!