Wrapping up 2010

As 2010 comes to an end, we have great news....Stanton does not have Cystic Fibrosis.  The test results returned negative!  John and I really didn't think this was the issue at hand.  Having the negative results though, is really a sigh of relief for us.

On Monday we took Stanton for blood and urine samples.  These will be sent to the Mayo clinic and tested for a variety of metabolic disorders, liver enzyme functions, organic acid functions, plasma levels and fatty acid oxidation.  I'm not sure when those results will return...but I'll of course keep everyone posted as soon as we know something.

2011 should be exciting: full of answers and progress!

On Wednesday Stanton and I traveled to Hattiesburg and had a behavior psychology evaluation with Dr. Kimberly Bellipanni at Will's Way.  She was wonderful!  I'm so excited to have found her.  After spending the last six years at John's Hopkins working with FEEDING, she decided to move home to Mississippi and open a clinic!  We will get started next Thursday with regular feeding sessions. I'm excited about her plan and her approach. I think it's a perfect fit for us.  I have homework before our first session! Dr. Bellipanni asked me to bring five foods, each in it's own container, to our next session.  Three should be something Stanton seems to enjoy and two should be something I'd like for him to eat.  This will be a stretch...maybe sweet potato puffs, marshmallows, veggie cheese, a chick-fil-a nugget, and toast?  That's about all he'll attempt these days.  I'm also to pick two movies that Stanton really likes and hide them away.  We will use these as motivators during the session.  She explained that this is much like when we go on a diet we give up dessert, then, the next time we eat our favorite slice of chocolate pie, it tastes even better than we remembered!  Well, for Stanton, food doesn't trigger that pleasure response, but movies do.  So, if he goes all week without watching Mater's Tall Tells, it will be a big motivator for him in our sessions. Cars Toon: Mater's Tall Tales (Two Disc Blu-ray/DVD Combo)

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.

When I'm With You...JJ Heller

To fully enjoy this video, you may want to pause my blog music first. 

Joy

Merry Christmas everybody! 

I've changed the background of the blog in honor of Christmas.

I made a mental shift over the weekend....finding a name or diagnosis for what's going on inside Stanton's body doesn't necessarily mean we will find a cure.  Finding a name will not change who Stanton is or who he can become.  Raising him to be a strong, fun, independent, world changer is up to me...not a doctor.  This is a profound "A-HA" moment for me. An internal break through.  Don't worry, we're still fighting for Stanton to feel good everyday - not just a day here and there.  Just today I was on the phone with a nurse from the team at Cincinnati Children's Hospital.  I reviewed with her all we've accomplished and looked into this month.  I was quite surprised with how long the review list was!

List:  started medication for gastroparesis, introduced egg with bad results, tested for Cystic Fibrosis and are awaiting results, have lots more genetic lab work ordered due to high levels in amino acids from previous testing, met with allergist (this is our current road block - both allergists we've seen don't think Stanton needs the skin test), saw our ENT, have spoken with our pediatrician several times, can't get our GI to return our calls, have started hanging out with our speech therapist in the radiology room getting Stanton ready and comfortable to complete the swallow study.

Whew!  We've been busy!  And, we will continue to be busy, however, I've decided the laundry can get folded later and the dishwasher can stay full.  When Stanton wants to play cars, we're playing cars!  We have also made the difficult decision to NOT travel over the Christmas holiday.  Thanksgiving was just awful for us....so, we're staying put.  I'm sad to not see my extended family, but really excited about Christmas morning at home. 

Yes, Stanton would love to have this car for Christmas!  But....it doesn't quite fit under our tree.  Not to mention we have several more years before he can drive! hahahahaha.  Stanton would like for Santa to leave hot wheels and a Buzz Light year with buttons under the tree.  So sweet and innocent and full of the wonder and joy this season naturally ushers our way.  We just have to be willing to stop and accept the gift of joy and innocence. 

Still Searching

Stanton is still just not himself. He has thrown up at least once a day (yesterday three big times). His nose is constantly running, his eyes are watery and his cough is still croup sounding. He seems to tire out easily when playing so we’ve just been watching a lot of movies! I think I have all three Toy Stories memorized. And to think I was one of those pregnant moms who said my unborn child wouldn’t watch TV until the age of two! Hahaha…..if only I had known…..

I’m experimenting a bit with how to give Stanton his medications. When we came home from Cincinnati, I just put everything together in one bottle three times a day. Since Stanton has shown an increase in vomiting, John and I started to wonder if the medications were effecting each other. The doctors say they shouldn’t….but something just isn’t right. So, this week, I’m putting a couple of medications in one bottle and the others in the next. He’s still technically receiving all meds 3 times a day (that is when he drinks all of his formula for the day….which actually hasn’t happened in a while). Anyway – I am hoping to land on the right combination soon. Or maybe, after 6 weeks of trying, the team will decide we aren’t on the right medications and we’ll start over with something else.

Stanton and I survived the cystic fibrosis test last Thursday. He was nervous and scared because we back in the lab. I assured him there were no needles, but I don’t think he believed me until it was over! The nurse was sweet and gentle. The test was really simple: they cleaned his forearm with alcohol, then attached two wax looking circles to the area. The nurse called them “watches” as the circles were attached to an elastic band much like a watch band. The “watches” were attached to a box with wires and held on his arm for about 10 minutes. They sent an electric charge to Stanton’s arm which stimulates sweating. The nurse removed the two circles and replaced them with one metal “watch.” She then covered it with saran wrap, plastic, a glove, an ace bandage, a bag and Stanton’s long sleeve. The instructed me to run Stanton around the hospital and get him hot….keep him moving. After 45-minutes or so, they took everything off and we were free to go home. The circle was full of Stanton’s sweat which will be sent in for the testing. I’m not sure when the results will arrive, but, based on our past lab experience, it will be around 6 or more weeks.

Our geneticist, Dr. Martinez, sent us the letter explaining the results of the amino acid lab work from August. I’m not really sure what it all means, but Stanton has elevated levels of dicarboxylic and 3-hydroxydicarboxylic acid.  We need to go back to the lab and have some plasma tests, metabolic tests and a repeat of the amino acid test. I believe these tests require both blood and urine samples.  The letter stated that this abnormality in enzymes and acid levels can be seen in patients with metabolic disorders including fatty acid oxidation defects or organic acid defects.  I'm clearly just stating the letter here and can't yet say what any of this is, what it could lead to or what it might look like.  I do feel, however, hopeful that we are one step closer to something here though.

We’ve scheduled an initial appointment with Dr. Holland, our new allergist for this Friday at 2:00. This is just a meet and greet - not the actual allergy testing. 

In our house, we call the season between Thanksgiving and Christmas Advent. For many years, I thought of Advent as a time to remember the miracle of Jesus’s birth experience and what that experience means to me. The story of the birth of Christ is amazing, don’t get me wrong. Who could really top the miracle of God becoming man through a virgin? However, since having Stanton and dealing with all of his health difficulties, this Advent season feels completely different. I have truly used this time to focus on the specifics of the season. Last week’s Advent focus was “hope.” I tossed around questions such as

What is hope?
what does hope look like?
What gets in the way of hope?
How do I live in hope?
What are my hopes?
How does hope manifest itself in my life?
Where does my hope come from?

This week’s Advent focus is “peace.” While I feel I live in hope and have hope for Stanton’s future…..peace is a different story. I’m really wrestling with this idea. Instead of peace, I find worry and to do lists and distraction inside my head. How can I stop and feel “at peace” with so many unknowns and so much to do and fight for? Do the words fight and peace work together? A fight is what we’re in the midst of. I feel we are fighting for answers, fighting for solutions, fighting for doctors to listen and work hard for Stanton. I’m not sure I’ve even considered the possibility of peace. However, I do believe that there will be a day when I am at peace with even the unknowns and the unanswered.

In honor of this Advent Season, I must share this with you:

Verse 12 is our promise of a Savior. Verse 13 answers our human condition and how I am trying to live daily.  Verse 14 is my hope for the therapists, doctors and nurses who surround Stanton.

Romans 15:12 - 14 
 12) And again, Isaiah says,


“The Root of Jesse will spring up,
one who will arise to rule over the nations;
in him the Gentiles will hope."

13) May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.

14) I myself am convinced, my brothers and sisters, that you yourselves are full of goodness, filled with knowledge and competent to instruct one another.

Juggling

What a busy week….and it’s only Wednesday! We gave Stanton his last breathing treatment Monday night. He still has a nasty sounding cough, but now has short spurts of playfulness and being silly. He is also up to drinking an average of 15 oz of formula a day (still not close to the 32 oz he should drink, but an improvement). Now, if we could just get him back to sleeping through the night – that would be great! I’ve been sleeping with him sitting up in the la-z-boy since Saturday. When he lays down flat, the coughing and vomiting really get exacerbated, so the chair has been the best way to keep him comfortable.


Today we had an ENT appointment in New Orleans. Our appointment wasn’t until 1:30 so we spent the morning at the Louisiana Children’s Museum with my dear friend and her children. It was great to just be out, playing, visiting, and feeling normal for the first time in a while. Thanks Nikki for meeting me and spending your day with us.

The ENT said Stanton’s throat and ears look good. He seemed as frustrated as I am that another year is about to close and we still have no real diagnosis for this chronically sick little one who still can’t seem to eat. I do feel we have a better plan of action – but in reality – we are still just ruling things out and searching. The ENT ordered a sweat chloride test so we have to go back tomorrow to have this done. They only do the test at 1:00 so we just missed it for today. This test rules out cystic fibrosis. I really don’t think this is what we’re dealing with, but the ENT was surprised to realize that CF had not been ruled out already. Stanton has had tons of upper respiratory infections, croup, and pneumonias, so the ENT felt we should take a look. Wish us luck with that tomorrow!

I also received a message from Dr. Martinez’s nurse. Dr. Martinez is our genetic doctor. We had some genetic lab work done back in early September. The last call I received said everything looked normal, but they were still waiting on one test to come back. So….9 weeks later the results are in. The nurse’s message said the organic amino acid results show an elevated level of enzymes and acid so the doctor would like for us to have more lab work done to look closer at this particular issue and other possible metabolic disorders. That’s all I know. Once I receive the order in the mail, I guess we’ll have to go in for more lab work.

My pediatrician made a referral to a local allergist, but I still haven’t heard about when the allergy testing will take place. My hope was that we could get started on this before Christmas….but we are just sitting tight and waiting.


Juggling many balls in the air,

Ginger