Reminder for Me

I mentioned in an earlier post that my mantra for the new year is Romans 12:12:

“Rejoice in hope, be patient in tribulation, be constant in prayer.”

Imagine my surprise when I found this wonderful interpretation on Pinterest today!

Make a Difference

Stanton has been healthy for the last six weeks!  We have made a couple of changes with his medications including adding Claritin , dropping Miralax to every other day and removing Prevacid. The Claritin seems to be working against the runny nose and mucus build up while the Miralax is keeping his system from backing up. Stanton has been on Prevacid since he was 10 weeks old.  The buffer compound that we use to mix it is no longer available, so our pediatrician agreed that now would be a good time to stop and see.  The longer we go between illnesses, the more courageous he becomes with food. I’ve seen a real increase in appetite without Prevacid.  I’ve been astonished as I watch Stanton eat and enjoy macaroni and cheese, carrot soufflé, hotdog, peanut butter, yoo-hoos, cinnamon rolls, pound cake, banana and granola.  In therapy he’s actually licked a variety of foods and textures without much complaint.  We are still holding our breath, waiting on the crash….but so far, we’re really enjoying a healthy Stanton!

The film crew for Abbott nutrition came over on Sunday to meet us and get to know Stanton.  He seemed really comfortable with everybody and spent the afternoon building legos, reading books, crashing blocks and playing space with the crew.   They were all super sweet and really great with him.  Luckily, the day of filming was a nice day and the crew got some great footage of Stanton playing outside being a wild boy.  They spent the afternoon filming us playing, reading, eating mac n’ cheese, being a big brother….it sort of felt like we were on a reality TV show as a camera man just followed us around.  Then it was time for make-up!  The make-up artist airbrushed make-up on and really pampered me.  I don’t usually wear lots of make up, so it was strange….but I must admit – fun.  The crew explained that they wanted us to focus on how Elecare has made a difference in Stanton’s life.  John and I took a trip down memory lane and looked through old pictures remembering that before Elecare, Stanton threw up at least twice an hour.  He spent his days lying around with no energy.  He was super emotional all the time and never felt good.  John and I took turns sleeping in his room as Stanton would wake up several times during the night to throw up.  Once we discovered Elecare, Stanton was already 20 months old.  Within the first few days of introducing this amino acid formula to Stanton, his vomiting decreased SIGNIFICANTLY from an average of 32 times a day down to 3 or 4 times a day. We realize that Elecare changed our lives by giving us a better quality of life.  During our filmed interview, John and I basically focused on this part of our journey.  We realize that Stanton has other issues, and we still don’t have a diagnosis, but we didn’t get into those issues as the point of the filming was about how his nutrition, health and feeding have improved due to this medical formula.

Abbott will use the footage to create a patient testimonial for medical conferences.  They will also put a short 90 second segment together for their website, however, this segment must be approved by the FDA – so who knows when that will be ready for release and what it will look like.  As soon as we have a link – of course I’ll share it with you! 

This is Stanton "on set" as we tested the sound

In the midst of dealing with the film crew, Cincinnati Children’s Hospital called.  They have scheduled Stanton for the week of February 20^th.  In addition to meeting with several specialists, he will also have a swallow study, a CT scan, a feeding evaluation, x-rays, an exploratory surgery/scope and internal biopsies with the otolaryngologist, gastroenterologist, and pulmonologist, a ph probe inserted to measure acid levels and follow up appointments with all the specialists.  It will be an extremely stressful, but hopeful week.  I ask you to all send us positive energy and prayers as we begin to make our travel arrangements and prepare for all the testing.  It is always an emotional time for our family…the anticipation of what’s to come, the hope for answers, the reality of process, our history of no answers, the financial burden.  It’s all part of our fight for Stanton’s continued health.  We do this to ensure that he will grow into who is to become and make a difference in this world. 

Featured

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!

Hope

It’s been a busy couple of weeks meeting with doctors, gathering records and keeping Stanton healthy!  We have temporarily withdrawn Stanton from school as we are trying everything we can to keep him from getting sick and losing more weight.  So, each morning we have “school” at home.  His school sent me a packet of worksheets, so each morning we complete one or two of those.  His “handwriting” is really improving!  This week he traced two long, straight lines without any help!  I was thrilled to see that kind of progress.  Stanton also seems proud of his work and like to save it and show Daddy when he gets home from work.

We saw the pulmonologist, Dr. Scott Davis, at Tulane a couple of weeks ago and he was really great!  He spent about two hours with us, examining Stanton, asking lots of questions, gathering information and reviewing Stanton’s history.  Stanton’s lungs sounded clear so Dr. Davis sent us down to radiology for a chest x-ray.  He wanted to establish a “baseline” of what Stanton’s lungs look like on a good health day.   After the x-ray we went back to his office and waited.  Dr. Davis showed us the films and pointed out some areas of inflammation and noted concern.  He has requested all of Stanton’s past x-rays so he can compare before jumping to any conclusions.  Dr. Davis said that Cincinnati Children’s is the best, rated number one in pulmonology, with one of the few in house pediatric “Aero-Digestive” centers in the United States. He is happy to partner with them and be our “local” pulmonologist.  I really am so thankful to have a local specialist on board with our Cincinnati team!

As I was shopping for stocking stuffers at Target on Friday, Cincinnati Children’s hospital called.  Stanton has been accepted to the Aero-Digestive program!  The team accepted Stanton about 2 weeks ago, but the gastroenterologist and nurse practitioner took some time to call and speak with our pediatrician and other local doctors who saw Stanton in the hospital over Thanksgiving.  They represented his case to the team this past Wednesday, with the extra details they gathered, and the team flagged Stanton as an URGENT patient.  The team’s earliest opening isn’t until the first of April, but because they consider Stanton urgent, they have bumped him to the top of the scheduling list.  I’m not really sure what that means, but I have a feeling we’ll be going at the end of January or early February…but can’t say for sure.   Someone from scheduling should call before Christmas to let us know when we are to come. 

This whole process is a roller coaster of emotions….I’m beyond excited to know that our son will be seen by some of the best specialists in the country. It is a bit heartbreaking to know I have a child who needs the best and has been labeled URGENT. It’s a relief to have access to the best! The six days of testing and exploratory surgeries will be nerve racking.   All the “what if’s” are playing through my mind. I am hopeful for answers…at least a better plan of action.  I feel vulnerable opening myself up to hope – but without hope, there is no fuel for our continued fight for Stanton’s health.  Romans 12:12 reminds me to “Rejoice in hope, be patient in tribulation, be constant in prayer.” Such simple instructions, yet, such a challenge on a daily basis!  I think this will be my new mantra for the upcoming new year.

Circumstances

I’m sitting in the waiting area while Stanton is in speech therapy today.  As I watch the variety of folks come and go, I realize that I have so much to be thankful for.  Although I have a chronically sick little man, with a future that is cloudy and unknown, he is so precious.  I do see God’s perfect love reflected on his face. He is silly and witty.  He talks up a storm about everything, especially warning signs.  He loves robots, rocket ships, airplanes, letters and dump trucks.  He is so acutely aware of the world around him and takes absolute joy in investigating his surroundings.  

I spend most of my time investigating options for his treatment plan.  Over the past six months and in the hospital, Stanton has lost lots of weight…so much that he is now in need of a feeding tube.  We are playing the waiting game to see the various specialists it takes to move forward with this surgery.  I called our team at Cincinnati Children’s Hospital and Stanton’s case will be presented to the Aero-digestive Team on Wednesday.  The nurse should call after the team comes up with a plan of action for us.  This does mean we will soon be back in Cincinnati for tests, procedures, meetings and possible surgeries.  I am hopeful that we will connect with a “local” team that will be willing to partner with Cincinnati – but so far that just hasn’t happened.  

On Thursday we will see a pulmonologist at Tulane.  I’m really curious about this appointment and what will come of it.  I will post our new plan of action after our Tulane appointment and once I hear back from Cincinnati.  Until then – our family really appreciate your prayers, thoughts, and positive vibes for Stanton!

“Circumstances may cause interruptions and delays, but never lose sight of your goal. Prepare yourself in every way you can by increasing your knowledge and adding to your experience, so that you can make the most of opportunity when it occurs.”  Mario Andretti

What Can You Handle?

“I know God won't give me anything I can't handle. I just wish he didn't trust me so much.”    ~ Mother Teresa

Stanton continues to have a respiratory crash every three weeks.  It's difficult to handle these illnesses so close together and yet so predictable.  We have one week of horror, then two weeks of good.  This time around it's put us in the hospital.  Stanton has pneumonia that he just can't shake.  It seems to be lingering in his lower left lung.  It's sad to admit, but being at the hospital has been a bit of a break.  Here, I'm only mom.  My only job is to comfort my child.  I can focus all my energy and efforts on him and his needs.  This, I can handle.  The nurses and hospital staff take care of everything else....the medication, the breathing treatments, even the food and clean sheets!  I am thankful to be in a place that is comfortable so I can focus on my job...being mom.

The pediatrician on call has witnessed what I deal with on a daily basis:  the fight to get Stanton to take anything by mouth.  One sip of apple juice at a time; the eye dropper of water; the throwing up of forced medications, the refusal of food.  He's really had nothing to eat or drink since Saturday afternoon and is, therefore, IV dependent while here.  Today, however, he's finally reached the bottom of an apple juice box.  It took all day - but he did it! I hope this is the start of a better night and day tomorrow.  We can't go home until he begins drinking and taking his formula (Elecare).

After watching our oral battle, the pediatrician has raised some tough issues for us to consider and pursue.  We first will see a pulminologist at Tulane.  That leads to a series of "What If" scenarios that I'm not ready to share.  The pediatrician wants to talk to our primary pediatrician about making a call to our team in Cincinatti.  The doctor feels it should be a phone conversation, not just a faxing of records.  This again leads to some difficult choices and scenarios that we must face.

Am I ready for this next, difficult journey?  Can I handle what lies ahead?  Why does God trust us enough to push my family down this stoney path? 

 "It is the LORD who goes before you. He will be with you; he will not leave you or forsake you. Do not fear or be dismayed.” Deuteronomy 31:8

What's new?

I know, I know….my past few posts about Stanton’s health have been the same story!  We continue to face the same issues – nothing health wise has really changed.  He’s loving school and really loves being a big brother to his 5 week old baby sister!  It’s been interesting trying to balance his health with a newborn baby girl!  So many have asked what’s next?  Where we will push next; what doctor we will visit.  I am just recovering from having a baby….and am not ready to travel with one so little and the other chronically sick.  I do have some ideas of where I’d like to push and investigate next, I’m just waiting for baby girl to have some vaccines and for us to get through the holidays.

Stanton awoke on Halloween morning with a terrible cough.  He spent the entire day sounding like an old man; coughing and sputtering.  I gave him extra breathing treatments trying to keep him going so we wouldn’t miss trick-or-treating.  That night we made it to my sister’s for a party and trick-or-treating.  Stanton made it to about six houses before needing to sit in his stroller.  I literally had to talk him into knocking on two more doors before we decided to call it a night.  He had fun while it lasted, which wasn’t very long.  When he has a respiratory flare up, the wind is truly knocked out of him and he simply has zero endurance.

As a mother, my heart is broken for my son.  I realize he doesn’t know things should be any different, as they’ve been this way for his whole life.  I acknowledge that I am in the midst of grieving this reality.  I wish he knew what it felt like to really feel good.  I’m not sure he’s ever had a day where he felt “normal” inside.  If it’s not his cough and difficulty breathing, it’s a pain in his stomach.  If it’s not his stomach, it’s a reflux kind of day.  If it’s not reflux, it’s constipation.  If it’s not constipation, it’s a day of blow-outs.  If it’s not a day of blow-outs it’s a day of low energy. If it’s not a day of low energy, it’s a day of unexplained hives.  If it’s not hives, it’s a hunger strike kind of day.  And so on…    

I used to pray and hope for healing, but now I find myself asking simply for today.  I pray that today Stanton will have a good health day.  I pray that today, maybe a doctor or new idea will present itself.  I pray for energy to continue aggressively fighting this battle.  It’s hard to look past today, for in the past when I have, I’ve just ended up disappointed or with more questions.  So, to survive all of this with some sanity, I have learned to take things one day at a time.  As I’m typing this, I realize it sounds depressing…..which I’m not!  This letting go has  really allowed me to enjoy just being in the moment, which has been so freeing for me! Before Stanton I was a planner and very “type A.”  He sure has taught me to really let go, go with the flow and be flexible!

Speaking of being flexible – he’s awake from his nap, crying and gagging…I’ll post more when I can!