Small Success!

Stanton has had a touch of pnuemonia this past week and weekend.  He's on tons of steriods and breathing treatments.  However, for the first time in a year, we were able to manage this at home!  The same symptoms, just three months ago, would have landed us in the hospital.  But, as I said in my last post, he now will take his medications and drink fluids.  This is such great progress for our family.

 

 

We go to Tulane to see the pulmonologist on Thursday.  I have lots of questions for him! Currently, Stanton takes Claritin every morning and Singular every night; Pulmicort every morning and Xoponex every night.  That just seems like a lot of different medications to help control his asthma.  My other question is about how to make his upper respiratory cilia stronger and more responsive.  His last scope at the Cincinnati Children's Hospital showed that during an "asthma flare" or illness his cilia freeze.  The cilia are the tiny hairs in our respiratory tract that help move mucus.  Since Stanton's freeze, his body has a difficult time fighting something like a simple cold.  

 

 

A friend of mine posted the verse below on facebook this week.  It was just what I needed to hear in the midst of my questioning God about why my child continues to struggle with his health.  May it speak to you as well this week

 

"No eye has seen, no ear has heard, no mind has conceived what God

has prepared for those who love Him." 1 Cor 2:9

 

same ol', same ol'

This pretty much describes our summer:

 

And this pretty much sums up the start of Fall:

 

I haven't blogged in a while because there really hasn't been much to report.  We continue to face the same daily struggles and battles we have all the time.  Stanton still has good and bad days; still isn't much of an eater; still sees more doctors than any four year old should; still has some sort of therapy practically everyday.

 

We are trying hard to have some "normal" kid things for him as well.  I really don't like the fact that his chronic illness and low immune system keep him from participating in school and many other things.  I know Stanton craves social time away from me.  So, in August he started Karate.  He loves it so far, although we have missed more than we've been thanks to asthma.  After Labor Day, we enrolled Stanton in a Sunday evening church program.  He's only made it once, but seemed to enjoy it.  I really hope his health will improve so we can participate in these fun activities on a more regular basis. 

 

We have made progress in getting Stanton to take his medications without throwing up (well, most days that is, as today he did throw up a claritin).  He also seems to know understand the importance of staying hydrated, and will now drink something even when not feeling well.  It does take lots of coaxing...but....it's working!  Both of these things may seem small, however, they have kept him out of the hospital for the last four months!  So, in our world....that's HUGE!

Maybe Monday?

Well the appetite stimulant we started Stanton on worked well for about ten days, then stopped.  So, we took him off of it for a week and started it back this week.  I’m disappointed to say I haven’t noticed a difference.  So, for the last two and half weeks, give or take, Stanton is only taking a bite of this or that and saying he’s full or not hungry.  It’s exhausting to spend my whole day revolved around bribing, pleading and buying anything your non-eating child says he might like to try. 

 

Crystal Light has come out with a line of “mocktails.”  We bought and tried the Mojito, Appletini and Margarita.  They are all delicious and really taste like a cocktail!  Since I’m breastfeeding a baby, it’s been a nice little treat for me.  We had the Margarita flavor in honor of Cinco de Mayo.  I pulled out pretty glasses and gave one to Stanton.  He said “what’s this?”  I told him “a margarita for Happy Mexico day.”  He drank it and loved it!  So now, he randomly asks for a “Margatita.”  It’s pretty funny to see an almost four year old trying to ask a margarita and has turned a few heads!  Time magazine should consider that for a cover (just kidding of course!)

Last week Stanton had a cold and asthma issues.  When he’s sick he always shuts down orally, so I wasn’t surprised that he didn’t really eat.  I was pleasantly surprised that he continued to drink!  Usually that stops too and we end up in the hospital to treat his dehydration.  So, I guess we did take a small step in the right direction with this last illness! 

On Monday we have an appointment with a gastroenterologist and feeding team at the New Orleans Children’s Hospital.  This was encouraged by our team in Cincinnati as they felt we really needed a local GI team.  If Stanton ends up needing to be treated while in the hospital sick, it’s easier to coordinate in New Orleans then trying to fly to Cincinnati last minute.  Cincinnati also said that if Stanton ends up needing a feeding tube, it’s always easier on the family to have those follow up visits locally as well.  I’m curious to meet the team and hear their advice and recommendations for our journey.  We’ve met so many doctors and specialists, it’s hard to be excited about it.  But, I do know that one day, we’ll walk in to a doctor’s office somewhere and they will just know exactly what to do.  Maybe that will be Monday…

Appetite

We started Stanton on an appetite stimulant two weeks ago.  Everything I found on line indicated we should see results within the first two days.  We really didn’t notice a significant difference in his appetite right away. One side effect is drowsiness and we definitely noticed that the first day.  Stanton seemed tired and lethargic in the mornings and a bit more clumsy, but we thought that could also be from lack of nutrition.  I exhaust my whole day trying to get him to take a bite of something, a drink of something or contemplating a way to bribe him into eating.  I know he’s hungry and doesn’t feel great.  This comes out in strange ways.  He is an emotional basket case and his behavior has become a bit unpredictable.  His patience level has dramatically decreased and he spends a lot of time extremely frustrated when things don’t work out they way he’d like.  It’s a fine line for me in parenting.  I know he has a good reason to act in such a reactive way.  I mean, when I’m hungry I’m a big grouch myself.  However, that type of behavior is really unacceptable.  So, I’m trying to continue to mold his actions and help him understand that food fuels his body and helps him not feel bad.

Stanton too tired to play outside

We have a great book about the body from Usborne books, See Inside Your Body.  One chapter is full of information about what happens to the food inside your body.  Stanton really enjoys lifting the flaps and talking about all the processes from swallowing, to digestion.  After he licks something or takes one bite he’ll say “Now I have much energy!”  Or sometimes he’ll ask, “is that food in my intestines now?”

After about six days on the appetite stimulant, we finally noticed an increase in his hunger level!  So, this past week has been great.  He is now drinking 5 – 6 oz of chocolate milk morning, noon and night.  Stanton’s finally picked out a sippy cup  (Who knew that could be so stressful) and is taking his chocolate milk in the Playtex insulated sippy cups with the hard plastic lids.  This is a HUGE relief for me.  We are hiding his medications and a two scopes of Elecare (his medical formula) in the chocolate milk.  So at least he’s getting some vitamins and nutrition, although it’s still not as much as his usual intake of Elecare.

Stanton is now consistently eating beef hotdogs, peanut butter on a spoon, McDonald’s French fries with ketchup, Chick-fil-a nuggets with Polynesian sauce and Kraft macaroni and cheese in the microwavable cups.  This is an exciting list!  We hope to see it grow as the weeks progress!

Slow and Steady

I spoke with the team in Cincinnati and they still don’t have the results of his cilia lab work. We are also still waiting to hear about our referral to the GI team in New Orleans. Locally we have been asked to participate in a newly developing asthma clinic with Memorial Hospital. I said sure and set up our first appointment in two weeks. 

Stanton is slowly beginning to eat.  It is a slow, arduous process….but with tons of encouragement, he is sustaining his weight finally!  Stanton continues to refuse his Elecare, no matter the container.  He is, however, now drinking about 5 ounces of chocolate milk in the morning and at night.  So, I’m hiding a scoop of Elecare and his medicines in the chocolate milk.  At least he’s getting a little! 

In speech therapy our therapist is working diligently at food chaining french fries. 

This has gone surprisingly well.  We started with fast food fries, then introduced varieties of fries, adding a new one each week.   

  

The plan is to progress to steak fries, then a potato and eventually mashed potatoes, etc. 

At home we’ve taken this concept with hot dogs and Stanton is now eating a sliced hot dog and a half of a corn-dog!  This is huge for a child who used to never put anything in his mouth!  We are thrilled with his brave spirit and pray this slow, but steady progress will continue.

Catch Up

I have so much to say and such little time these days!  I do apologize for this way overdue post.  So many of you have asked about our trip to Cincinnati and our recent hospitalizations. Thank you for your kind words, prayers and positive thoughts.  It’s been a tough start to 2012, but we are paddling along, taking things in stride as they come. 

Just to put things in perspective:    Our sweet baby girl is now six months old.  Stanton has been in the hospital four times since becoming a big brother!  We spend the weeks in between hospital stays recovering, rebounding, playing catch up and trying to restart some resemblance to a normal routine, only to find ourselves intertwined in chaos all over again.

Stanton was hospitalized the first of February with a severe asthma attack which lead to an upper respiratory infection.  Two weeks later we traveled to Cincinnati for our week of testing at the Children’s Hospital.  Stanton saw various members of their top rated aero-digestive team including pulmonology, ENT, gastroenterology and the feeding team.  Our first appointment was a video swallow study.  This involved Stanton eating a variety of things mixed with barium while being videoed and x-rayed.  This is super complicated for a child who doesn’t eat much and is super picky about what he will eat.  If it’s the wrong color or texture – it’s not going in his mouth.  Mixing foods with barium changes both the color and the texture…so it was an interesting experience to say the least.  I was able to get him to eat some pudding and some peanut butter.  It was enough to show his swallow and the test verified all was normal – good news!   We spent the rest of the afternoon registering for all the various procedures to come. 

Stanton had a sedated CT scan of his respiratory system the following morning.  That same afternoon we met with the pulmonologist and reviewed the CT scan and his history of serious respiratory illness.  The pulmonologist said his symptoms and hospital stays didn’t match the CT scan.  The scan didn’t show much damage to the lungs or bronchs, only a bit of scar tissue which did prove his continued chronic episodes….but didn’t explain them.  

The next morning we checked into the hospital for the aero-digestive team scope.  The ENT, pulmonologist and gastroenterologist all preformed the scope together, each looking at their area of the body.  Anatomically, everything looks normal and is functioning as it should.  Biopsies were taken and we are still waiting for some of those results. The ENT said Stanton’s throat is functioning well.  He did remove Stanton’s ear tubes as they have been in for two and half years.  The pulmonologist discovered that Stanton’s cilia in his upper airway were stiff and unresponsive during the scope.  He took a biopsy and sent them to the hospital’s in house lab where they remained unresponsive.  So Stanton’s cilia have been sent to a lab overseas for further testing. We still don’t have those results. 

The gastroenterologist also took some biopsies of his esophagus and stomach.  He then inserted an impedance probe which Stanton kept for the next 20 hours.  The impedance probe is a small tube that goes up the nose and is threaded down into the esophagus.  It’s attached to a small computer box that Stanton had to “wear” on his shoulder (like a purse). The probe records changes in flow within the esophagus, the pH of the esophagus and other common reflux symptoms.  It also shows how far the reflux goes.  While Stanton had the probe I had to push a button on the computer box if he coughed, burped, gagged or threw up.  I also had to push a button when he was eating/drinking.  Stanton’s impedance probe showed that he refluxed 68 times and 54 of those times reached his throat.  This just showed us that he still has very active, severe reflux.  Even though he hasn’t vomited since November, he is still dealing with this disease.  So, the gastroenterologist put him back on prevacid. 

After we checked out of the hospital we met with the feeding team.  They pointed out that the list of foods Stanton will try is three times as long as it was this time last year.  We all understand that he is being sustained by his medical formula, Elecare and food is still experimental for him.  However, his weight was good so they encouraged us to try some tough love as Stanton will only drink his formula out of a baby bottle.  Part one of the tough love is the suggestion of putting an NG feeding tube through his nose the next time is hospitalized and on a feeding strike.  He hated the impedance probe down his nose due to the tape on his face….so the feeding team thought that might be a wake-up call for him.  Stanton will drink other things from cups and straws, but not his formula, so the team suggested we begin offering his formula in a cup just to see what would happen.  They also encouraged us to find a local feeding team and GI.  They suggested we look at the various options in New Orleans.  After comparing the pediatric programs in New Orleans, we’ve decided to try the New Orleans Children’s Hospital.  They have a feeding team with a strong reputation.  My pediatrician is in the process of setting up a referral to one of their gastroenterologists.    

Since we’ve been home Stanton has been in the hospital again…but it was a short stay so the doctors here did not do the NG feeding tube.  We have started fading out bottles and of course Stanton refuses to drink his Elecare now!  Initially I was offering the cup of formula and as soon as it was refused, I’d give it to him in a bottle.  I faded this out as time went on with no progress.  I realized that as long as the bottle was an option, that would be his only option.  His bottles are old and all starting to leak and drip.  This has been a source of frustration for Stanton. So, I told him that if a bottle was drippy, we’d just throw it away because it was old and not good anymore.  We have thrown away all but about three bottles, which I’ve hid so that his only option is now a sippy cup or cup with a straw.  Fast-forward to today…..this has totally backfired on us!  He is completely refusing the formula in a cup.  Stanton got really sick this past weekend and ended up back in the hospital so I gave in and dug out a bottle.  He promptly stated that bottles are for babies and he is not a baby.  Ugh….so now he won’t even drink it in a bottle anymore either!  Elecare has 30 calories per ounce and Stanton was drinking about 32-36 ounces per day.  This means that his intake is down an average of 900 calories per day now and he isn’t really replacing them with anything substantial.  He has re-lost all the weight he just regained!  I’m feeling frustrated and worried. I find myself spending my whole day trying to get him to eat and drink.  It’s completely exhausting and beginning to feel like a no win situation.  I appreciate all of your thoughts and support as we continue down this unanswered path.

Fervor

Note:  I wrote this post a month ago!  Stanton ended up being admitted and I just haven’t had to post

My poor sweet Stanton has eyes so red and watery he can hardly see; a nose running a marathon and a cough that rattles our windows. It’s 4:30 am and now that the throw up has come and gone and the breathing treatment is over, I’m sitting beside him, anticipating every irregular, labored breath.  He brings his shoulders up as he wheezes to breath in and moans as he breathes out. This moment…all too familiar….all too “normal” for us… simply sucks. 

As we cuddled on the couch this morning, I knew this moment was coming.  His nose had started running and he was constantly rubbing his eyes.  He also refused all food and Elecare (his medical formula) which is a tell-tell sign….watched him carefully study this painting we have hanging in our living room.  

“What are you looking at Stanton?”

“The colors.”

“What about the colors?”

“Blue is a good breath and red is bad.”

“What does a blue breath sound like?” Stanton took a nice, slow, deep breath in and out

“And what does a red breath sound like?” Stanton gasped for air and coughed.

Such wisdom for such a three year old. 

This painting is titled “Fervor” based on Romans 12:11 “Never be lacking in zeal, but keep your spiritual fervor, serving the Lord.”

As I sit here today, in my pjs, with three day unwashed hair, holding a baby and caring for a chronically sick three year old I find myself wondering….do I still have fervor?  Is this painting still what my spirit looks like?  I have to dig deep inside myself – but I’m happy to find it.  Fervor, you are there!  I will use this gift to stay true to our goal = a complete healing for Stanton.

Stanton spent four days in the hospital after this post

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!