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  We have temporarily withdrawn Stanton from school as we are trying everything we can to keep him from getting sick and losing more weight.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!

Life with Two

I'm happy to announce that Stanton LOVES his new little sister! He pulls everyone who stops by over to her and says "look at my baby sister!"  He's constantly wanting to love on her and kiss her.  Here he is meeting his sister, Miriam Sage, for the first time.

Every Three Weeks

Well...I'm bummed to say that Stanton has not been able to break his cycle of crashing every three weeks.  This last episode was exactly 3 weeks to the day!  Our pediatrician says it's got to be allergy related as whelps and rash indicated a histimine response.  But I have to wonder, what kind of allergy shows up in a cycle and only rears it's head every three weeks?  To me, it feels like a virus or hormonal or immune related.  Since we've been to four allergists and three immunologists, I do feel a bit flustered.  I've spent some time searching his predictable pattern on-line (whelps on face -- then runny nose -- then sneezing and allergy eyes -- then rash on torso -- then violent vomiting -- then drop in oxygen levels) and so far am empty handed.  It seems like the "rash" for everyone else in the world could follow a common cold or leads to terrible things like seizures and death.  Neither of which we've experienced; thanks be to God!  I'm determined that our consistent clues do mean something more.  I've just not found the right article, research or specialist to investigate the pattern.

He's happy once again this week, but still has a hard time catching his breath when playing as boys do.  Here's a recent picture of our sweet "Bubble Boy."

Stanton is very excited about becoming a big brother! Our baby girl is scheduled to arrive on Friday, September 23rd!  Stanton asks everyday when I'm bringing her home. Our family sure appreciates everyone praying for us, sending positive energy our way, thinking of us - whatever your style is.  My heart's desire is that baby girl arrives into this world strong and healthy and that big brother Stanton stays well for the next couple of weeks as we transition home with the new baby. 

"The LORD bless you and keep you; The LORD make His face shine upon you, And be gracious to you; The LORD lift up His countenance upon you, And give you peace." ~ Numbers 6:24-26

Partners in Crime

It’s official.

I know I shouldn’t feel surprised or disappointed….but I am a bit. I’m only human and the momma after all. My educated brain knows that 60% of kids with severe reflux have it, or that’s what all the research I find on-line suggests. I mean, we’re already treating Stanton for it with a daily breathing treatment called Pulmicort. Looking back over the last three years, we’ve treated most of the classic symptoms and flare-ups, however, each doctor, ENT, Immunologist, Allergist, Gastroenterologist, etc. we’ve seen has tip-toed around calling Stanton’s chronic lung/breathing issues what they really are….until today. ASTHMA - today Stanton received a diagnosis of asthma. Asthma and Reflux are truly partners in crime.

Since July 30th we’ve been to the pediatrician three times. On July 30th we went after Stanton crashed. This is what I’ve jokingly describe as his “time of the month.” Every three to three and a half weeks, the bottom just falls out from under Stanton. The mystery dots appear, the refusal of oral intake begins the clear runny nose kicks in, the vomiting eventually explodes and his oxygen levels plummet. On August 10th we went for an ear infection and increased reflux. Today we went for the right on time three week crash.

surviving on Mommy and Daddy's bed

The pediatrician obviously knows our situation and history and understands that getting a prescribed antibiotic down him is impossible. So, poor Stanton received a big shot of rocephin. We have all the inhaled and dissolvable steroids at home…so that’s where we are now, continuing to alternate the breathing treatments between Pulmicort and Xopenex. I’m hoping that Stanton will begin drinking something again by tomorrow so I can hide the dissolvable steroids in his Elecare formula. That’s the only way to get them down without a huge throw-up episode. (He hasn’t had any Elecare since Saturday around lunch).

Once we are over this episode, the pediatrician wants us to increase his daily Pulmicort breathing treatment from once to twice a day and see if that makes a difference. He also suggested we start watching to see if Stanton’s episodes become more frequent now that he is in school. If they do, the pediatrician wants us to seriously consider taking Stanton out of school. He said it’s his either his social development or his health and right now we may not be able to have both. UGH!!!! I thought we had finally arrived at something normal!!!! And Stanton really LOVES his pre-school. We’ve had zero transition issues. So I’m keeping my fingers crossed that it won’t come to this.



A couple of days before Stanton crashed



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….

Big Boy Stuff

My last post did jinx us a bit. Stanton was very sick last week with the all too familiar upper respiratory gunk. Thankfully this episode stayed in his airway and didn’t seem to drift down into his lungs. But, we were on hourly breathing treatments for 24 hours and then they slowly faded to every two hours, every four hours and eventually only twice a day. By Friday he seemed to be back to his normal.

The breathing treatment cave

Now for our “Big Boy Stuff” news !

Stanton has successfully transitioned into his “Big Boy Bed!” He seems really proud about it too, which is pretty cute! He is sleeping through the night and says it’s “comfy.” We are in the process of painting baby girl’s room, so not all of the furniture has been moved yet. Once Stanton’s room is finished, I’ll post pictures.

The other “Big Boy Stuff” news in our household is that today Stanton started Pre-K! He went right in the classroom, said “hi everybody” and let the teacher help him find his cubby for his backpack and things. I didn’t know if I should feel proud or sad….he didn’t seem to care that I was leaving. This – my little boy who I’ve held through illness after illness for so long. He’s no longer clingy and needy. He’s becoming a little person!

He said school was fun and his teacher is nice. I asked about his friends and names, but Stanton said “I don’t want to talk about it anymore.” I had to laugh, as that sounds like something I’d say! The school sent home two worksheets from class. Both were tracing activities: tracing shapes and letters. Stanton just scribbled on the shapes page, but on the letters page, it looks like he actually attempted to trace a few with a pencil. I really pray the rest of the week goes as smoothly as today!

Enjoying his class

Progress doesn’t = Answers

Back in June, Stanton received a immune boosting vaccine called the Pneumovax 23. Because he’s had so many pneumonia episodes (19 to be exact), Dr. Niolet, the allergist/immunologist, thought this vaccine could help boost his lung function. The Pneumovax 23 is a vaccine we’ll all receive when we’re 65 years old! Dr. Niolet also prescribed a daily breathing treatment called Pulmicort, again to help Stanton strengthen his lungs. We started all of this as we set off for our Disney vacation. I’m happy to report that Stanton has not had ANY respitory issues since the first of June! This is the longest we’ve ever gone without a cold, sinus infection, respiratory infection, or pneumonia. I’ve hesitated posting this….waiting on the day I’ll eat these words…..but I think it’s all really working!

Stanton’s MRI results returned normal! We are excited to not have to venture down that road anymore. Also, although some of his genetic testing points to abnormalities, all the geneticists agree that we no longer need to continue down the genetic path. We met with a metabolic genetic specialist at Tulane and he said Stanton is a beautiful, adorable child. There are oddities both in testing results and his history, however, nothing that points to or defines a diagnosis. He predicts all of Stanton’s delays will catch up by grade school! These words were gold to a mother’s ears and heart.

Stanton still has bad tummy days. That hasn’t changed. However, his ability to bounce back after a severe vomit episode has been remarkable. I’m noticing that his bad tummy days correlate with the days he doesn’t get all seven doses of his medication (one Miralax, three Erythromycin and three Prevacid/Buffer Babies compound). Stanton is a terrible medicine taker! So, I just hide the medicine in his Elecare. This is getting tricky as we are starting to address his dependence on the bottle. All of our doctors continue to say, not to worry that Stanton is still on a bottle…he’s been through so much and is finally growing and thriving…but all of his therapist say otherwise. So I’m listening to all sides and merging ideas: we offer his Elecare in a cup, but don’t force or push the issue. Sometimes he drinks a few sips, but he hasn’t yet taken in his full caloric need through a cup. Since Elecare is his means for gaining weight and “looking so healthy” I’m not ready to really rock that boat. At the same time, I don’t want to enable a behavior that is developmentally holding him back. It’s a delicate balance for sure! Once he no longer takes a bottle, I’m not sure I’ll be able to easily hide his medication. I know I need to come up with a plan for getting his medicine down without a disguise. This will be hard for us both!

Proverbs 3:5-6 “Trust in the Lord with all your heart and lean not on your own understanding; in all ways submit to Him, and He will make your paths straight.”

Stanton will become a big brother in late September! So we are also working on moving him into a “big boy” bed and slowly introducing potty training. We are looking at pre-schools and other times for him to be independent. As I worry and plan for all these changes, I am completely aware of how they are the “normal” issues all parents face. It’s a blessing to have finally arrived at something “normal.”

The Reality of a "Vacation"

In December, 2009, we planned and booked a vacation to Disney World in Orlando, Florida for June, 2011. Stanton turns three on June 12, 2011 and, back in 2009, we thought this would be the perfect time to go. For starters, children get in FREE until the age of three and this is Stanton’s official last week of being a two year old. We also must have really believed what the doctors kept telling us - that most kids outgrow the developmental delays, need for aggressive therapy, specialists, reflux disease and needed nebulizer treatments.

So – here we are in Orlando – with the special medical formula, Elecare; with the erythromycin for Delayed Gastric Emptying; with the nebulizer disguised as a dragon and two inhaled steroids that go in it; with the prevacid compound for gastroesophageal reflux disease; with the steroid cream for the unexplained recurrent hives; with our undiagnosed, sick little man. What we were thinking – right?

After arriving Sunday, we woke up Monday ready to hit Hollywood Studios. Afterall, Stanton loves all the Pixar films and this is the park where most of those characters hang out. Stanton awoke with other plans. His tummy hurt and all he wanted to do was lie around, watch tv and cry. Everything was a fight….changing his diaper and getting dressed was clearly an episode straight from those fake wrestling shows. Somehow, by 9:30, we were in the car and on our way with our unpleasable child in the backseat. Stanton cried as we put him in the stroller, cried as we entered the park and had our bags searched, cried as we checked his medications and formula into the first aid center, cried as we looked for the dang Toy Story Mania ride. The crying and awful behavior escalated as we stood in line for Toy Story. He hit himself, others around him, kept falling to the floor, screaming, etc. We created quite the in-line entertainment for the hundred or so families…although I’m sure it wasn’t what they wanted to witness. Disney is supposed to be the happiest place on earth – right?

After surviving Toy Story Mania, we headed back to first aid to calm Stanton down. I washed his face, got him to drink a bottle, changed his diaper and just sat. The nurse suggested we try the Honey I Shrunk the Kid playground so loaded up our screaming child and headed that way. I really didn’t know what to do but keep walking. Everyone we passed turned to watch Stanton’s spectacle - a parade of screaming, kicking and gagging. Once inside, Stanton actually pulled it together and played for a good 20 minutes in the playground. I sat on a rock and focused on holding back the dam filling my eyes and soul.

Across the way from the Honey I Shrunk the Kid playground was a stunt car race show which was to start in 5 minutes. Stanton LOVES cars and crashing and fire on TV so we thought we should try it. The wait in line was slightly better than Toy Story only in the fact that he kept his hitting to himself. We lasted one stunt, then had to get up and leave. We were all done for the day at 1:30.

As we entered the first aid building, the sweet nurse that had been helping us all day saw it on our faces. “Leaving all ready?” she asked. My eyes brimmed with tears as I nodded. She put us in a quiet room and we let Stanton pull himself together, drink some more formula and just be. The nurse then told me we needed a disability access pass for our other park days. She was surprised we had not already done so. So, we walked next door and completed that process before leaving the park.

On Tuesday we didn’t go anywhere or do anything. Stanton continued to cry and complain about his stomach. He had several blow outs Monday and Tuesday and woke up Wednesday with his trademark bright red whelps on his checks. He goes through this very cycle about every three weeks – which I suppose has fallen on our vacation week. However, once the whelps appear, Stanton is happy again. So, with a happier version of himself, we headed to the Magic Kingdom Wednesday night. Because of our disability pass, we were able to conquer an average of four rides per hour. Thank you Disney for being so amazing and accommodating to families like ours!

I think the pictures tell the rest of our Wednesday….

Don't panic. I'm with you.

There's no need to fear for I'm your God.

I'll give you strength. I'll help you.

I'll hold you steady, keep a firm grip on you.

Isaiah 41:10

This verse became my mantra this week! Stanton has been very sick – again. Monday, Tuesday and Wednesday consisted of me literally holding Stanton pretty much all day and night. This bout started as always with a clear runny nose and sneezing. Within 24 hours, Stanton was very lethargic and having a hard time breathing. In the pediatrician’s office his oxygen level read 45% (normal is 100% and the hospital admitting rate is 40%). Several breathing treatments later and armed with prescriptions for antibiotics, steroids, and two different medications for his nebulizer, we finally headed home. Every two hours I gave Stanton a breathing treatment, until that night, around 11:30, our nebulizer decided to stop working! Getting through Tuesday night was very scary. It’s hard watching your child struggle to breath and not be able to do anything about it. So I held him, paced, rocked, sang, prayed and cried.
Somehow we survived the night. Early Wednesday morning our dear friend Kim brought over her daughter’s nebulizer for us to use until we could get a new one. I’m not sure Kim realized what a blessing that was for me – but at that moment, I realized that we would be okay. A couple of breathing treatments later, Stanton finally drank an ounce of juice and played a little. I traded in our broken nebulizer for a new one. The new one is a purple dragon! It’s really cute. It even came with a castle carry case – very creative!
We made it to our appointment with Dr. Niolet, our fourth allergist. He said he must agree with the other allergist we’ve seen and doesn’t think Stanton is dealing with allergies. He feels Stanton’s immune system is low and he is having asthma type reactions to simple colds or seasonal allergies. So he gave Stanton an immune boosting shot for pneumonias and put him on a daily breathing treatment. We are to try this for a month and see how it’s going. If things don’t improve, Dr. Niolet said we would then investigate environmental allergies. I guess we’ve waited three years, so another month won’t hurt.

Today I received a letter stating Stanton’s MRI was “normal for a child his age.” I should be relieved right? And I guess deep down I am….but my mama gut still thinks there is something that connects all of Stanton’s issues…we just can’t seem to find it. And maybe it’s not for us to discover. Stanton is still Stanton and our precious boy!

MRI complete

Today Stanton had his MRI.  He was not happy to be at the hospital and panicked a bit on the way in, but once we settled in the waiting area, he calmed down and played.  The staff was great and took his history of vomiting and aspirating all into consideration.  They really did go out of their way to keep Stanton happy and comfortable.  I was able to go into the MRI room and put him on the table while the anesthesiologist put a "space rocket" mask on him.  He was out within 10 seconds, then I had to leave and wait.  The procedure took about 30 minutes and we met a screaming Stanton in the recovery room.  He stopped crying as soon as I picked him up and rocked him - so sweet that even that drugged, he knew his Mama.  We stayed in the recovery area for about an hour and then made the trip back home.  Stanton stayed pretty grouchy until around 4:30 when he finally decided to drink some his formula.  (He hadn't had anything since 2:00 am).  He's been happily playing since then!

We won't have any results until the end of the  week - and that's really when our doctor will receive the results. As soon as I hear something I'll let you know.  Thank you friends for your sweet words of encouragement today!

Ginger

New Ventures Ahead

  I’ll go ahead and admit it …. the past four weeks have been tough!

Stanton continues to be trapped in this cycle of having a few good weeks…then the mysterious rash appears…then the grumpy, un-pleasable Stanton emerges – which inevitably leads to major reflux flares or upper respiratory illness or the combination of both! Currently we have the pleasure of dealing with the combination of terrible reflux and a sinus infection. Yes, joy of all joys!

We have frequented our pediatrician’s office an average of every 3 weeks since November. We love our pediatrician, Dr. Schepens, but I’m sure she would love not seeing us so often. We were there just yesterday for the sinus infection and I expressed my frustration with this pattern we can’t seem to crack. She said all of his symptoms point to allergies. Well, we’ve seen three allergists: one local who laughed us out of his office, one at Ocshner’s who did a ton of blood work all related to food allergies and immunological issues, and one in Cincinnati who did the skin prick testing for food allergies. Dr. Schepens pointed out that no one has tested Stanton for environmental allergies and that we should explore and rule them out, so she has referred us to another local allergist. He has only been in the area for a couple of years and she has heard lots of good things about him. So, on June 1st we will try again to communicate with our fourth allergist, Dr. Niolet.

Our team of therapists at the Children’s Center, in Hattiesburg, also think all of his symptoms point to allergies! So, as of this week, we are now on a strict elimination diet. The therapists took the time to contact all of our local therapist and our team in Cincinnati before recommending the diet. Everyone is on board! Basically, Stanton will just have his formula and medications for 10 days. Then, we will reintroduce one preferred food every 4 days. During this time I have a very detailed chart to fill out daily and submit. I must chart when he drinks, how much he drinks, when he gets medication, when he throws up, if a rash appears, when his behavior changes and when he has blow out diapers. Our team feels this could reveal a sensitivity to a medication or a food and will help rule out why he is continuing to feel bad and vomit so frequently.

We’ve also learned that Stanton’s MRI has been scheduled for next Tuesday, May 24th. Please keep us in your prayers as we aggressively venture down these new paths. It is a lot of information for us to keep up with - but we will do whatever it takes to make our little Stanton feel his best!

"The Lord is good, a Strength and Stronghold in the day of trouble; He knows (recognizes, has knowledge of, and understands) those who take refuge and trust in Him." Nahum 1:7

With thanks and love,

Ginger

MRI

  Last Monday I took Stanton to see his developmental pediatrician, Dr. Anderson. She is so nice and always really connects with Stanton. She said that she just ran across some recent research about the digestive system. Here’s what I remember from her description of the research: The digestive system is the only system in our bodies that can work apart from the body. The only way the digestive system communicates with the rest of our body is through the vagus nerve. The vagus nerve begins in the brain and stimulates both the lungs and the stomach. The research suggested that patients who were being treated for gastric issues, should instead be treated for a neurological disorder. That quite possibly there is a misfiring from the brain to the digestive system via the vagus nerve. Hmmmmm…..interesting stuff isn’t it? Okay – I’m totally a nerd, but also the mom to a child who takes a variety of medications for the various issues in his digestive system. He takes something for his upper esophagus, something for his stomach and something for moving things on out. Wouldn’t it be great if all he needed was a medication for his brain? I don’t even know if a medication like this exists yet, but the idea of it all really has me intrigued.


So – Dr. Anderson is in the process of setting up a sedated MRI for Stanton. She said that she is really interested to see what it reveals and feels it could show something. She reminded me that he has more going on than just the feeding and digestive issues….low muscle tone, mild sensory issues, and some facial features that suggest a disorder. All of this could be revealed through the MRI.

I’ll keep you posted as things progress!

Ginger

Happiness is a Happy Gut

The need for breathing treatments finally came to an end on Sunday! It’s a relief to see Stanton breathing naturally and comfortably after his latest battle with pneumonia. 2011 has been a year full of upper respiratory issues and pneumonias for our little man. With each one, I’ve noticed that about a week after starting antibiotics, he breaks out in a rash. The rash begins around his ears and stretches down to his upper chest. Just tiny small red raised dots. With each episode, I’ve come up several possible reasons for the rash: playing in the grass; wearing a hand-me-down shirt that I’m not sure I washed; soap from his bath; etc. The last time I noticed the rash, about two weeks ago, I took him into the pediatrician and she agreed it looked like an allergic reaction to the antibiotic. With this latest illness, she put him on a different antibiotic, a non-penicillin version, called omnicef. Stanton broke out in the rash on Monday morning. This time around I finally think I’ve uncovered the mystery! Each time he is sick, he is on a combination of antibiotics, steroids and breathing treatments. Usually the steroids are only given for five days, the breathing treatments for seven or eight days, and the antibiotic is for ten days. The rash appears on or around day six…exactly 24-hours after his last steroid dose…..steroids are sometimes given to suppress allergic reactions. So, Stanton’s pattern fits! His reaction to the antibiotic is suppressed by the steroid, then surfaces once the steroid is out of his system! I must confess, I feel like a really slow Sherlock Holmes. I called and left a message for our pediatrician with this information, and am curious to see if she agrees with my “scientific” observation. I stopped giving him the antibiotic on Monday, but, as of today, Stanton’s rash has crept up his neck and around his chin. The spots on his chin seem to be a bit more splotchy. So – today I’m continuing my experiment. I gave Stanton a left over dose of steroid this morning. I hope the rash is gone by this afternoon….but if not, I’ll call the pediatrician and make an appointment. It’s nice that everyone at her office knows us by name, but I also understand that this means we frequent her business way too much!

Another unfortunate side effect of omnicef for Stanton has been his stomach. The possible side effects list that it could make your bowel movements red and more frequent. Poor Stanton reacted exactly that way! So, on Monday, when I stopped the antibiotic, I didn’t think to put him back on Miralax (his usual daily regimen). I felt that his stomach could use some time to recover. This decision completely backfired on me Tuesday. We went to our Kindermusik class and I noticed him withdraw from the group and flap. He only flaps like this when he’s about to throw-up or when he’s constipated. Since he wasn’t moaning or crying with the flapping, I guessed he was constipated and made a mental note to give him Miralax when we got home. After Kindermusik, we go straight to speech therapy. We made it into the waiting area, talked to everyone and read a book. As soon as Stanton stood up to put the book back, he started screaming. The kind of scream you hear when a child falls off the monkey bars…that I’m really hurt and something is broken cry. His face became as red as I’ve ever seen it as he doubled over and grabbed his knees. His face started sweating as he screamed and gasped for air. I got on my knees and told him to hold on to my shoulders and squeeze. He clung to me, unable to stand up straight and screamed. This went on for about ten or twelve minutes. All the staff and therapist kept coming out to make sure we were okay, shocked to see him doubled over in pain. A speech therapist brought us a wet washcloth and sat with us on the floor as I tried to just hold him and comfort him the best I could. The sweet office manager, who Stanton is always flirting with, started crying along with Stanton saying she wished she could do something for him. Stanton has been like this before – always when he’s severely constipated, and usually in the privacy of our own home, which just hasn’t happed in a long time thanks to Miralax. He finally calmed down enough for me to carry him to the car as a therapy student carried our stuff for us. I let him continue to push and squeeze me at the car until finally he pushed out a hard golf-ball size rock. Immediately he was happy and better! I changed him and got him home and yes, got a dose of Miralax down him.

So many times we’re told to follow our “gut” instinct or “go with our gut.” In Stanton I clearly see the emotional connection the gut obviously has with our body and mind. When his tummy is happy, he is happy…and so am I.

 Ginger

Double Dose

In the past, when Stanton gets pneumonia, it’s usually just in one lung. Well, this unfortunate go around shows fluid in both lungs! Poor little guy just can’t catch a break….or his breath! He just recovered from pneumonia two and half weeks ago; I hadn’t even packed his nebulizer back in the closet. As he grows, at least he is becoming more compliant with his breathing treatments, which used to be all out torture sessions. Today he came up with the idea that his monkey, Mitzi, should have a breathing treatment too.

 This is how we’ve spent every two hours since Saturday night.

In days as long as these, I really love the message found in Romans 8:18, “ I consider that our present sufferings are not worth comparing with the glory that will be revealed in us.”

Hmmmmmm…..what will Stanton become? Will we one day look back and see this season as just a blur in his life? How will Stanton make a difference in the lives of others? What glory will be revealed within him? When I consider all the amazing possibilities before him, I get excited and know with confidence that we will endure this time and Stanton will indeed grow into all that he is to be.

School Called

I only have about 3 minutes, but wanted to let you know that the school in Hattiesburg, MS called and they have a spot for Stanton in April.  Which is next week according to my calendar....but I'm not sure about days and times yet.  A speech therapist called with some questions for me and said she was excited to work with him at the school!  I really think this will be a great fit for him.  The school is called the Children's Center and sits on the campus of the University of Southern Mississippi.  It's about an hour drive for us, but we should only go 2 days a week, so that's doable.

Ginger

The No-Nap Blues

Web MD states that 90 minutes should be “just perfect” for naps.  Well – what do you do when your little one decides to roll around, sing and play for those 90 minutes? Stanton gets in his bed just fine, it’s the going to sleep that seems to be the problem. Daily, I, the Really-Needs-a-Break Mom, sit through an hour or more of listening to Stanton sing, play, talk to somebody, rearrange his pillows, etc. instead of going to sleep.

By 4:00, he clearly begins to regret his no-nap decision, but now it’s too late to take a nap. The Really-Needs-a-Break Mom in me has made that mistake! Napping at 4:00 only leads to a child who won’t go to bed until midnight! This clearly only happened once and right then and there I made a vow with myself to never allow a late nap again. A late nap is NOT better than no nap!

No-nap days lead to the “suffrage hours” which clearly fall between 4:45 and 6:00, which, coincidentally happen to be the same time my relief support (husband) arrives home from work. I’m sure his nose leads him through the door as he tries to decipher what might be for dinner. Instead, he enters to find a wild child in just a diaper, no spot to sit in the living room as I’ve given up and allowed Stanton to make a cave out of the couch cushions, and me, my hair in the remains of a ponytail, dressed in pj bottoms and a t-shirt. Dinner? What’s that? Didn’t you pick something up on your way home? Oh wait, there’s a bag of chips and a jar of peanut butter….does that count?

Seriously though, what are families to do when their toddler decides naps aren’t needed? I guess cocktail hour is an escape…except for the fact that now I’m pregnant, so I’ll just reach for the bag of cookies instead!

Ginger

Yes- he's growing up!

Long Time, No Blog!

A friend's email prompted the title of this post.  She was just making sure all was ok with Stanton. I realize it has been a really LONG time since I sat down and put together an update. For that – I apologize. We are still here and working very hard to keep Stanton moving forward. He is actually now eating a few bites of banana and peanut butter crackers! Yesterday he ate half a pancake with syrup! It’s amazing for us to watch it all unfold. Slow and steady wins the race.

There are several factors that have gotten in the way of my computer time....

1. I picked up a couple of extra afternoons of work. I teach music on Mondays. I also do some programming for a local camp and retreat center. The center would like for me to work 20 hours a week, but so far, I maybe get in 8 – 10 hours a week. So, I found a sitter that Stanton really likes and now am going into the office on Tuesdays , Wednesdays and Saturdays.

2. Stanton has decided napping isn't for him. This means I no longer have ANY downtime or time to stop think anymore. On the one day a week he might decide to nap I’m at work or running around crazy cleaning and catching up around the house.

3. It’s tax season! I do our taxes using Turbo Tax ....so for a couple of weekends I secluded myself and finally e-filed them last week

4. Stanton’s been sick twice since my last post. It seems like when he’s sick, everything just takes a step back and we spend a good week catching up. Between doctor appointments, breathing treatments, therapy evaluations and endless sleepless nights, I’m exhausted.

5. The biggest reason is that I'm 12 weeks pregnant! I’m not sure who coined the term “morning sickness.” It must have been a man as I’m sick from 4:30 on. I feel like I’m riding in the back of a car while trying to read….motion sickness. I can't sit up or move without throwing up so once John gets home from work, I just don’t move unless absolutely necessary.
I know – excuses, excuses…..but here I sit, finally blogging again while sipping a Sprite and nibbling on saltines.

Thanks for waiting,

Ginger

Cheese Please

We tried a slice of real cheese yesterday....

...Stanton ate it with 1/4 of a scrambled egg and appeared to enjoy it!  However, we've been dealing with the aftermath ever since.  All of his diapers have been blow outs.  Last night he got on the floor in fetal position and cried for about 20 minutes, then finally had a bad diaper.  The dairy really upset his little system.  Today I'm also noticing some strange behaviors including lack of attention, inability to remain still, and some self stemming behaviors spinning toys (something I've NEVER seen him do).  Stanton's speech therapist noticed this in therapy this morning too and asked what we'd done differently.  All we've done is try the cheese. 

So, for now, we will continue to stay dairy free!

Ginger

Stanton LOVED flying and made friends with all the flight attendants! He was most intrigued with the “what to do in an emergency” pamphlet. The flight attendants really got a kick out of watching him study it for the entire flight. They gave us a copy to keep when we landed in Cincinnati.

Our first appointment was with the Allergist on Wednesday. We spent the first hour talking about Stanton and his symptoms. (He eats, then gets sick 3 – 4 hours later.) They were very thorough and supportive. A child life specialist came in and showed Stanton what the skin testing would look like and had him give a few pricks to a doll. She brought in lots of fun toys to keep him occupied. The testing went amazingly well. Stanton cooperated and didn’t cry until the last three pricks.

All of the testing returned negative for allergies! Keep in mind that a milk protein intolerance is not something that shows up in allergy testing….and this is something the team feels that Stanton has. But – the allergist said we can feel safe offering Stanton a variety of foods.

We had to be at the hospital early Thursday morning for Stanton’s delayed gastric emptying scan. He couldn’t eat or drink anything before the test so we just let him sleep late and took him to the hospital in his pjs. Stanton drank about 2 ounces of his formula mixed with a nuclear ion. Then he had to stay still on his back for an hour. Cincinnati Children’s is super child centered! To keep Stanton still on the table, they put a towel over his stomach and a sandbag on each side of him. He could have gotten up if he wanted, but the towel served as a reminder to stay still.

A child life specialist came right in with movies, light up toys, flashlights and glow in the dark toys. Each time Stanton became restless, she pulled something new out. He actually stayed on his back for the entire hour without complaining! The machine took pictures of his stomach every 30 seconds. Stanton passed the scan by emptying exactly 60% of his stomach’s contents....the minimum but just enough! The GI said that this proves the erythromycin is working.

After the scan we headed upstairs and met with the feeding team. Each member of the team comes in one at a time – then everyone meets together and comes up with a plan of action. The gastroenterologist comes in last with the recommendations and basically wraps up everyone’s opinions. We saw a speech therapist, an occupational therapist, a behavior therapist, a dietician, a geneticist, a nurse, and the gastroenterologist. The therapists seemed pleased with Stanton’s current therapy schedule and the things we are working on. They said he’s really made quite a lot of progress since we were there in November. The therapists watched him take bites, refuse foods and drink from a variety of containers (cup, sippy cup, straw, bottle). The only concern raised was the issue of Stanton protecting his airway when drinking/eating. Every time he finishes his bottle he starts really coughing and sounds congested for about 5 minutes. He also does this if he eats a good portion of solid food. They were disappointed that the swallow study we had done locally only showed his swallow (which is what I thought it was supposed to show). They explained that when they do swallow studies they also wait about 10 minutes after the child drinks/eats to watch the airway’s response.

The dietician was satisfied to see that Stanton’s weight has remained steady since November. I asked if we should decrease the amount of formula Stanton is drinking to encourage him to eat more solid foods and she said NO quite emphatically. She recommended that we continue giving 32 oz. of Elecare a day (his medical formula) as that’s full of vitamins and nutrition. He isn’t eating a variety of fruits or vegetables yet so the formula is what his body is thriving on. She encouraged us to keep our routine of offering small snacks at the table – but to add more variety to what we offer. For example, since one of Stanton’s accepted foods is peanut butter, try offering peanut butter on a banana or an apple slice.

The geneticist came in next. She said that all of the abnormalities that returned on Stanton’s last genetic testing are just indicators that he is on the formula Elecare. She looked at Stanton and played with him and commented that he does have hypotonia (low muscle tone) which is the culprit behind his eye issues, tongue issues, gross motor delays and stomach emptying issues. She said she didn’t feel there was a genetic issue and that we should stop pursuing anymore genetic testing. That was great to hear!

Finally Dr. Pentiuk, the gastroenterologist, came in. He said we were doing everything right and that this feeding monster is a slow and steady process. He felt like we are making some real progress. He recommended we increase Stanton’s erythromycin dose, which treats delayed gastric emptying, and see if solids stay down better over the next 3 months. If not, there is a surgery that we can come back for where he would expand the bottom of Stanton’s stomach and botex the stomach muscles. He also recommended that if we come back for the surgery, he’d like to redo the swallow study and also do a FEES, a fiber optic airway exam. Both of these tests would look at his airway while eating.

So, for now, we are back home and waiting. We will continue pushing in therapy, offering foods and just waiting for the day Stanton decides to eat and keep it down!

Patterns

Four days after completing our last round of steriods and antiobiotics.....we're back on! Thank goodness both come grape flavored and I can semi-hide them in his formula. I just hope we all get some sleep and Stanton's nasty chest cough is cleared up before Tuesday. We fly to Cincinnati on Tuesday for a few days of testing at the Children's Hospital. Stanton has only been sick about 4 times since we were last in Cincinnati (November):


1. Thanksgiving - ate 3/4 of a scrambled egg then became congested and went downhill quickly that day. This episode required breathing treatments and steroid shots.
2. January 6 – ate for the behavior psychologist. Vomiting began about 4 hours later
3. January 21 – ate at Piccadilly. Had about 2 spoonfuls of corn, half my portion of carrot soufflé and 4 bites of jello. Became very congested that night and vomiting began the following day. This turned into aspiration pneumonia.
4. February 8 – ate well at speech therapy. Vomiting began three hours later. Wheezing began the following day. Back on steroids.
Does anyone else see a pattern here? Each serious illness begins with EATING. Stanton has the desire to try and taste and eat…then he severely pays for this choice. I’m looking forward to sharing this information with the team in Cincinnati. Maybe a light bulb will turn on in one of their minds…

We will meet with an allergist who works on the aero-digestive disorders team and Stanton will undergo full allergy testing. We'll meet with a geneticist who also works on the team and she will review all the testing we've done thus far. I'm hoping she gives us some good insight about our most recent metabolic results. Stanton is then scheduled to undergo a nuclear medicine test for delayed gastric emptying. We'll wrap everything up by meeting with the gastroenterologist and feeding team again.

I'm looking forward to the trip, although it will be tough on Stanton. I just hope it brings us one step closer (okay, maybe like five steps closer) to an answer!

Happy Valentine's Day!