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I'm so excited!  I just got off the phone with a representative for Elecare.  This is the medical formula Stanton has been on since he was 20 months old.  They ran across my blog and would like to feature Stanton's story on their website!  So, a film crew, make-up artist and interview person will all come and film our family this Sunday and Monday!  It's so exciting and a bit crazy.  I hope Stanton cooperates and that we can appear calm and natural.  Once the segment is done, I'll be sure to announce it here!

Cincinnati Children's Hospital also called today and said the earliest they can schedule Stanton is the end of February.  I said that was fine, so we should have definite travel plans soon. 

The new year is up and running....I do look forward to answers coming this year!

Connect the Dots

As I dressed Stanton for school this morning, I noticed the dots. They’re back! All over his torso, sides and slowly spreading to his back. I looked at the calendar and guess what? It’s been three and a half weeks since the last dots occurrence. It really is every three weeks or so. He was super irritable and weepy this morning. However, he wanted to go to school. With no other symptoms, I took him.

Stanton was excited when he walked into the school. He ran right in his classroom and hung up his backpack! When I picked him up he looked tired, but was still all smiles. He even gave every child a hug before leaving. His teacher said he had a good day. When I got him in the car I looked and noticed out of the 10 ounces of formula I sent, he only drank 2. No wonder he seemed tired and lethargic…..I thought. So, he drank another 2 ounces in the car on the way to speech therapy. At therapy he began complaining that his ear and head hurt. Sure enough, his left ear is draining.

As soon as we got home he sat down at our kitchen island and started profusely vomiting…..everywhere. Once I calmed him down, got his wet clothes off, sponge bathed him and settled him down on the couch in just a diaper, he fell asleep. Thankfully his draining ear was facing up, so I dug around in his cabinet and found some left over antibiotic single dose ear drops and gave him dose. I haven’t decided if I’ll take him to the pediatrician or not. I guess I’ll see how the rest of the afternoon goes and if need be, take him in the morning.

It’s only his second day of school. Looks like he’ll miss day three. Bummer!

I wish someone, somewhere, would connect the “dots.” I feel strongly they represent something more going on inside his little body…hmmmm….

There are so many things to update!  I'm sorry it's been a couple of weeks since my last post. We've been swimming in paperwork trying to follow up with the genetic recommendations.  Stanton's latest genetic lab work showed abnormalities in his plasma, carnatine, enzyme, organic acids and fatty acid levels.  The report suggested we see someone who specializes in metabolic disorders.  The referral to the bio-metabolic genetic clinic at Tulane University was finally sent over yesterday.  After calling and calling and getting no where, John faxed all 41 pages of the genetic report to our pediatrician.  That seemed to get the office's attention!  Tulane is to call us for the appointment.....so we're just waiting.
 
Stanton finished his round of antibiotics this past Sunday after aspirated a couple of weeks ago.  And now is sick again!  However, this latest episode didn't end up in his lungs....thank goodness.  He just looks like he has really bad sinus/allergy gunk.  His eyes are bloodshot, puffy and watery; his nose is constantly running clear and he's sneezing and coughing his head off.  He's pretty miserable.  I took him to the doctor this morning just to be sure all was okay - and she said to just give him Zyrtec. 

We leave next week for Cincinnati Children's Hospital for a week full of tests.  I hope Stanton is in better health before we board the plane!  I'm also hopeful for some real treatment options.  We've been giving Stanton the medication for delayed gastric emptying and I just can't say I've seen a real difference.  Thank you all so much for your encouragement and prayers as we continue down this winding road!
~Ginger

Open Doors

"When one door closes, another opens; but we often look so long and so regretfully upon the closed door that we do not see the one which has opened for us." 

~ Alexander Graham Bell

For two and a half years now, we've tried to gather doctors, specialists and therapists around us.  A team of experts all focused on Stanton's well-being...a team dedicated to finding answers...people ready and willing to fight for his health. Doors have closed along the way.  Roadblocks leading to detours.  Telling our story to any doctor willing to listen.  Telling our story to doctors not interested.  Learning who to push and who not to waste time with.  Many miles traveled in a quest for answers and solutions.  As 2010 comes to a close I realize that although we still are without many answers, a door has opened for us. 

John and I have made the difficult decision to stop trying to develop a "local" team of specialists.  It's exhausting and simply not working.  I spend all of my "free time" letting laundry pile up as I call every allergist in a 120 mile radius only to learn that they are not familiar with GI related issues nor the elimination diet.  I spend hour upon hour making appointments, faxing records, following up with insurance, traveling to appointments, telling our story - only to hear that they don't know....or have considered.....

A team is already in place and waiting to work with us!  So, we are Cincinnati bound!  Stanton and I will travel back to the Cincinnati Children's hospital in Febraury.  We will meet with doctors and have some testing done. Although traveling is difficult - it is the best choice for Stanton for this time.  Plus - I feel excited about this choice; like a weight has been lifted off my shoulders! We are now an integral part of a true team!  It's taken me two years to stop looking at the closed door....the dream of a local team.  But now that my eyes are set on the open door - all I see is hope.

Cincy Details

Listen to my words, Lord,

consider my lament.

Hear my cry for help,

my King and my God,

for to you I pray.

In the morning, Lord, you hear my voice;

in the morning I lay my requests before you

and wait expectantly.

~Psalms 5:1-3

I have been fervently asking God to open doors for us in Cincinnati. The closer our trip is, the more nervous I feel. We are traveling such a long way to see this doctor. I just don’t want our trip or our efforts to feel in vain. Well, yesterday my prayers were acknowledged! Nurse Julie called from Cincinnati Children’s Hospital and asked if we could change our appointment from 1:00 to 8:45. She said that Dr. Pentiuk had reviewed Stanton’s medical records and thought he would benefit from also seeing the feeding team. This means that Stanton will now be observed and assessed by an entire team of experts who deal with feeding disorders: an Occupational Therapist, a Speech Therapist, a Psychologist, a Dietician, a Physician, an ENT, a Genetics doctor and the Gastroenterologist, Dr. Pentiuk. Nurse Julie said we should plan on spending 3 – 4 hours at the hospital.

Now, I can look forward to our trip! I’m really even excited about it! Today, the nurse practitioner from the feeding team called and spent 45 minutes on the phone with me asking detailed questions and going over everything for our visit. She let me know that the assessment room has a DVD player and that we will have some down time between meeting with team members. We are to bring some things that Stanton will eat or try to eat as well as his Elecare and any bottle and sippy cup he will drink from. She let me know that after each team member has had an opportunity to interact with Stanton and talk to us, they will all meet and come up with recommendations on what to do next. These could include tests, therapy interventions, etc. The nurse practitioner let me know that each person we meet with will be billed separately to insurance and we will need to be prepared to pay multiple co-pays. I just grinned and thanked God over and over for providing for us…..our insurance has pre-approved Cincinnati Children’s Hospital as an “in network” provider!!!!!!

Guess where John’s college roommate lives? In a suburb of Cincinnati! He actually works only a mile or so from the Children’s Hospital! So, we will get to hang out with him and his sweet family over the weekend. I just feel completely overwhelmed and humbled that God has perfectly arranged each and every detail of this process so that things just fall into place for us to go, focus on seeking the best care for Stanton and have a little fun too!

 

Amino Acid Formula

We received great news in the form of a letter from our insurance company!  Stanton's special formula has been approved and will be covered!  He drinks an amino acid based formula called Elecare.  It is quite expensive and has definately changed our household budget.  So - today we are super excited!

If you're curious or would like more information about this formula for children ages 1 - 12, please visit http://www.elecare.com/.  Great website with lots of user friendly information.