Toast

Stanton loves the whole game of making TOAST. This is a big deal for our household, as he is a child

who doesn’t eat solids. However, thanks to a “Toast” song we learned in Kindermusik class, Stanton

enjoys acting out the whole toast making process. When he became interested in toast, I ran to the

 health food store and found Udi's dairy, gluten, soy free bread.

I found earth balance dairy, soy free butter at Wal-Mart.

We pull the step stool up to the toaster so he can reach

Next we spread the butter

Put the bread in the toaster

Wait for the toaster button to pop

And after he experiences the whole process of toast making, Stanton will sometimes take a lick.

One bite of success

Occupational Therapy

Stanton is in early intervention and through this program receives speech and occupational therapy (OT). He’s been on a waiting list with a highly recommended occupational therapist since April. We are now officially off the waiting list! Today we met her for an interview and evaluation. She asked tons of questions and had me complete a sensory screening profile. Then we went into her “gym.” Such a fun place! There is a wall of climbing equipment, a slide, huge balls, little balls, games, swings and Stanton’s favorite, a big ball pit.




Stanton has always been a deep sensory seeker….he loves to squish in the couch cushions, climb on soft things, roll on the floor, bounce, burrow under blankets. The ball pit was just heaven for him. Swinging, on the other hand, is something that he has always avoided and doesn’t seem to enjoy. When we go to the park, he won’t even acknowledge the swings and turns into a limp rag doll when I try to put him on a swing. I did find this one picture of Stanton on a swing. I think this moment lasted as long as it took to click this picture.

The OT said that every child she’s ever worked with that has feeding or oral motor issues also has a fear of the swing! What a strange combination. I asked her what the connection was and she said she couldn’t put her finger on it. It’s just a fact she’s observed. Hmmmmm………my research brain is going crazy to match this link! I know that swinging is good for the vestibular system. I guess I never considered that the vestibular system plays a role in feeding. As I find more information about this apparent link, I’ll post of course.

So – this is where we begin. The OT wants to strengthen his vestibular system. She thinks that she can get Stanton not only on the swing, but enjoying it within a month!

Labels

How do you describe a child? By their hair color? Height? Personality? Age? Gender? Likes? Personality?

Me too…

…So you can imagine my distress as I read the following descriptive words in the genetic summary: dysmorphic features, frontal bossing, hypotonic, epicanthal folds and low set ears. I googled each word so to decipher the message encrypted in the report. I found that all of these adjectives point to a possible genetic condition when they combine or accompany another symptom.

After all we’ve been through, I really thought we had already heard everything. I guess that’s why we continue to add specialists to our list. Each doctor looks at his/her own area of the body. I’m discovering, that my job, as the parent, is to put each part together and somehow connect the dots.

After eating a chicken nugget and paying the price....

Feeding Clinic

Paperwork….
…..is endless when you have a child with medical issues. I’ve spent the last few weeks completing the 23 page intake forms for the Marcus Institute Pediatric Feeding Disorders Clinic in Atlanta, Georgia. I’ve also called our whole team of various doctors and specialists to request medical records for the feeding clinic…which entails filling out several medical release forms and faxing forms back and forth. The good news is that the clinic has already called to verify the referral and go over a few more questions. I am now just waiting to hear back from the clinic. They should call with an evaluation/interview date soon.

So – what is a feeding clinic and is this really the best road to travel for Stanton?

the great debate....to try or not to try

The Marcus Institute is one of only a handful of pediatric feeding disorders programs in the country. I like the Marcus Institute as it is the closest program to us, it incorporates a true interdisciplinary approach and, since we lived in Atlanta for over ten years, I have a support system there and know the area. The Marcus Institute’s website states they have an 84% success rate in increasing a child’s willingness to accept and swallow bites quickly. They also promote that upon completion of the program, bottle feedings are reduced to only 47% of a child’s daily calories. Good results, right?

Some days, I really think we’re dealing with a feeding disorder and am so eager to get started with the feeding clinic. Most other days, I’m not so confident. Stanton does have his moments of curiosity with food……but those moments continue to consistently end in disaster. Just this past week we went to the mall and ended up at Piccadilly. I got a veggie plate and once seated, Stanton said “yummy, yummy corn, eat.” So I made him a small plate including about 10 corn kernels and a spoon full of carrot soufflé. He ate most of the corn and all of the soufflé and asked for more, so I excitedly gave him another spoon full of both. For Stanton, an entire teaspoon full of anything is what I now define as “a really great eating day.” We spent the entire rest of the weekend dealing with chronic diarrhea, battling a yeast infection diaper rash and creating a whole Pixar short film of our own just to encourage him to drink something.

Then again yesterday, Stanton seemed to enjoy licking the chocolate icing off of a donut and tasted a morsel or two of John’s chocolate birthday cake. By 8:45 pm he was up screaming. By 9:00 pm I was completely covered in a bucketful of vomit. All I know to do in a moment all too familiar for us, is to strip off all the clothing covered in the aftermath and hold Stanton close. I hum and rock and comfort him until he eventually falls asleep. Last night, John took over the rocking and comforting so I could take a shower.

Thank you my love! John and I truly are a team as we attempt to maintain some sense of sanity in the midst of such sudden chaos.

So for today, I am again rethinking the pursuit of a feeding clinic.

July in Review

Hello. I first must apologize for my month long hibernation from blogging. July has been hectic. I took a position running a summer camp program, so the first three weeks of July were filled with teens and summer camp. John took Stanton to my Mom’s every day. Stanton and I saw each other for maybe 30 minutes a day. It was really hard for both of us. Needless to say, we’ve spent the end of July just trying to get back on schedule and re-establish a sense of routine.

Some of the small progress Stanton made in June really regressed in July. We worked so hard to transition him off the bottle and onto a straw…..he is now refusing the straw and will only drink from the bottle. He was beginning to taste and lick a variety of foods……he now sometimes runs and hides when invited to join us at the table. He was complying with taking his medications three times a day…..it is now all out war to get just one half dose down him. He’s also shown an increase in constipation and vomiting. I feel that this was his way of letting us know he missed the security of having Mommy around. It is going to take some time to see the more self-confident Stanton again. BUMMER! However, this completely confirms what choice is right for our family.

All mothers struggle with the idea of “should I stay home?” or “should I go back to work?” There’s tons of debate on the internet on this very topic. In fact when I Google “stay home or go back to work,” I receive 105,000,000 results! Well, I too have been wrestling with this idea, and, because of medical debt, decided that working just temporarily or part time would be financially helpful to my family. A little voice inside of me, however, reminded me over and over that God would take care of things if I just trusted and believed. So many blessings came our way this past spring. It has been a truly amazing time to see God work in our lives. His provisions for us never cease to amaze me. Through our struggles and blessings, I can clearly see that God is arranging things in the perfect way so that I can be home with Stanton.

Here’s a quick overview of doctor updates from July. I took Stanton for his two-year well baby visit in early July. The pediatrician, Dr. Schepens, was thrilled with Stanton weight and said he looked great. She was especially proud of the bug bites and bruises on his legs. Dr. Schepens said that all little boys who feel good have legs like that! She also asked me some questions about his birth….and when I answered yes, she asked permission to speak to the geneticist. Of course I agreed, but am unsure of what red flags she founds. John took Stanton to a genetics appointment in mid-July. The doctor seemed to think we were doing everything we possibly could and said he could only recommend more blood work and testing to rule out some possible syndromes. He is to send us a report of his observations and recommendations. John and I really haven’t decided how we’ll proceed. I suppose we’ll just wait on the report and then decide. I had a phone consultation with our gastroenterologist, Dr. Serrano, just this past Friday. Because of Stanton’s severe constipation issues, increased vomiting and painful crying…..Dr. Serrano wants Stanton back on Prevacid. He has yet to take it for me, which I really wasn’t prepared for. He’s been on Prevacid since he was 12 weeks old. We’ve only been off it since the end of April. Anyway, once I can get it down him, it should help with his acid reflux and chronic heartburn. Dr. Serrano also wants to refer us to an in-patient pediatric feeding disorder clinic. John will fax a bunch of paperwork on Monday to get this process officially started.

We are so hopeful that the right combination of medication and therapy will help Stanton become more comfortable, which in turn, will make life easier for all of us. Thank you so much for your prayers, sweet words of encouragement and support along the way.

Since the allergy testing all came back negative, I do feel a little more relaxed about food and Stanton. The news hasn’t changed the way Stanton reacts to or accepts food, however, it has changed my attitude. I no longer find myself hovering and worrying over every possible taste, lick or bite. We are to slowly introduce things so that we can pin-point and record any reactions. Thus, we begin our journey along the bumpy, windy, cobble-stone road with hopes that the destination takes us to a place where Stanton can trust, eat and enjoy food.

This weekend John and I had such an amazing time with Stanton.  We camped out, enjoyed the beach, spent time with friends and simply just had fun.  We especially enjoyed introducing Stanton to and watching him dip french-fries into ketchup. Stanton carefully lifted each fry as if it were the finest piece of crystal stemware. He first carefully touched the tip of the fry into the ketchup, then to his tongue. After a few cautious dips, Stanton grew more and more courageous. He began licking the ketchup off each fry and then actually took a bite of a fry. He just held the tiny bite in his mouth for a moment, then spit it out. It truly was a magical, fun time at the table – which didn’t have a happily ever after ending. (Stanton threw up four hours later) It’s a bit sad for me to know that we’ve been denied this experience until now…I guess I’m starting to face the fact that we’ve all experienced trauma.

No Food Allergies

We spent most of Wednesday with doctors at Ochsner’s. First we saw the Allergist/Immunologist. He reviewed all of Stanton’s results from our recent blood work and testing. The immunology report found that Stanton has NO elevated levels of eosinophils in his bloodstream. This completely rules out the possibility of Eosinophilic Esophagitis. This is great news for Stanton and gives us hope that maybe one day he will be able to enjoy food! The only area of concern from an immunological standpoint is that Stanton has very low strep and pneumonia fighters. The doctor wrote us a prescription for an extra vaccine as Stanton is a “partial responder” to the Prevnar vaccine that all babies receive. Stanton does have a history of several pneumonias and chronic upper respiratory and ear infections, but they’ve always trailed behind severe vomiting episodes. I haven’t really decided what I think about that yet.
Basically, the allergy tests reveal that Stanton isn’t allergic to anything. The doctor explained that many people are “intolerant” to a food and unfortunately there isn’t a test for that. The doctor said that obviously Stanton is reacting to foods and we should just keep trying the elimination diet and documenting his responses to food. He went on to suggest that because Stanton will sometimes eat, then not get sick for a few hours, it could be a motility issue, and that is something to discuss and explore with the gastroenterologist.

We then meet Ms. Jan and her boys for lunch at Piccadilly. There is one just a few blocks from the hospital. Stanton really enjoyed listening to the boys talk about the new Toy Story 3 movie! I ordered some corn for him and he happily played with the corn and spoon and maybe ate a few bites. The corn was cooked in butter . Stanton has always quickly reacted to dairy products – usually via chronic diarrhea. Well, this time, he developed a whelp style rash on his right check…the same check Stanton covered with corn juices as he attempted to use a spoon. Of course – we’d just left the allergist appointment. Why, oh why, couldn’t the allergist see this bright red growing rash!

Well, our next stop was with Dr. Serrano, the GI (gastroenterologist) and she pointed the rash out right away. I explained that it had just developed since enjoying corn at Piccadilly. She said, “Was it cooked in butter?” I admitted it must have been. Dr. Serrano said it looked like a definite dairy reaction. She said she had reviewed the results of all the blood work and understood that although Stanton isn’t allergic to anything on paper – we knew and could document specific reactions to foods. Yeah, I thought, just look at his face! We discussed many, many topics – too much to really to list. The main deciding points at this visit included sticking to the elimination diet, introducing a new medication, and getting a second opinion about feeding clinics.

Dr. Serrano knows a GI who helped start an inpatient feeding disorders clinic at the University of Pennsylvania. She asked if she could call him and see if he thought Stanton would be a good candidate for this type of clinic. Dr. Serrano said she has only sent children who are failure to thrive and on feeding tubes to these type clinics. But, she feels, as do I, that because Stanton is now beginning to show some behavior issues related to food and feeding, and because he is bottle dependent, a clinic stay could be the thing that saves us from a feeding tube. She said to think of it as “preventative care.” Although he has some medical issues and a restricted diet, an intensive treatment program, could jump start Stanton and get him to a more age appropriate place. I am open and ready for this as I see him falling further and further behind his peers.   There are only ten inpatient pediatric feeding clinics in the United States.  I've just looked at a few so far:  Pennsylvania, Maryland, New Jersey and Georgia.

Stanton’s new medication is to increase the speed of his body’s digestion. The allergist and Dr. Serrano feel that his 2-3 hour vomiting delay after eating could imply that Stanton has delayed gastric emptying (also called “motility”). The GI said that rather than doing more tests and scans, let’s just try the medication and see how it goes. Well, this morning was my first attempt at getting the medication down. What a nightmare! Three outfits later, and we still maybe got ½ ml in him. And I’m supposed to give this to him three times a day!!!!!! That’s just craptastic! Stanton cried, screamed, vomited and flat out refused the medication. I then attempted to hide it in his juice – failed attempt number two! I even hid it in a small amount of Coke and he still wouldn’t drink it – failed attempt number three. I then took it along to our occupational therapy session – failed attempt number four. I don’t know what my next strategy will be. I’d love some ideas.

So, what does the “elimination diet” mean for Stanton? We have been given a green light to introduce one food group a week. The doctor recommended that we start slow and with “safer” foods as you would with a baby….. starches….. fruits… vegetables. So, this week we are trying fruits. Stanton has enjoyed diced peach cups in the past and loves apple juice, so I figured that was a safe place to start. I am to closely monitor and right down any changes in bowel movements, vomiting and skin rashes. Stanton licked a piece of watermelon this morning, grinned and said “yummy, eat.” Then he leaned in for his second lick, only to be surprised by the eruption of his ever present dormant volcano. After I cleaned him up I was astounded to see him reaching for the watermelon again. Again, he said “yummy.” I fought back tears and said, “yes, it’s yummy.”