Week Two

Jack's 2nd week of his class was yesterday and I'm happy to report that he handled it MUCH better! I heard no crying from the waiting room. He did have a hard time at drop off and wanted Steve to take him to the room rather than his teachers. Once he was there, however; he was off to the races! Leslie did say that he's still having a hard time sitting still for "Circle Time" but other than that, he did so well. He brought home a beautiful picture of an apple tree and the biggest accomplishment yet was:

HE TRIED THE SNACK! They had bite size oreos and chocolate chip cookies. While weary at first, once one of the teachers showed him what to do and he watched the other kids try them, he apparently tried two bites! I was so proud I could have cried.

In other news I've gotten a few calls from Kennedy Krieger this week. We're still trying our hardest to get all the paperwork together for the NBU and they were calling to check on the progress. I'm still waiting on his latest IEP from Infants and Toddlers and I'm in the midst of an argument with Barquist about his medical records. We got a copy of them to take to KKI when he went for his eval and the Feeding Clinic kept them for their records. Now the NBU want a copy and the Feeding Clinic won't share so we went to Barquist to request a 2nd copy. The lady at the desk was incredibly rude and informed me that we'd have to pay for them (Okay! I just need them!) because they only DO one copy. Sigh. It's frustrating. Hopefully we'll be able to get the paperwork in in the next few weeks.

A quick update on Jack's speech. He flat out refused to participate in Speech Therapy on Tuesday. Despite being incredibly excited about seeing Lisa and her bag of toys, it went down hill from there. He did one activity and then tried to get down. He didn't want to play with her, he just wanted to sit in my lap. So we both decided to end the session early. No use in forcing him.

Next week is a busy for him! He's got OT on Wednesday, class on Thursday and then on Friday we're headed to the Infants and Toddlers Fall Fest! They've rented out a whole farm and there will be hayrides and a petting zoo! We can go through their pumpkin patch and play lots of games. It sounds really fun and we're looking forward to it. Our friends, Josh and Becky and their 11 month old son Owen are hopefully coming! I'll definitely take pictures to share!

Until next time!

A few things!

Lots been going on in the world of Jack recently, I'm sorry I haven't updated sooner. Where to start?

First things first, we got the results of Jack's blood work back from KKI. Jack does not have Celiacs disease nor is he allergic to wheat, dairy, eggs, soy, and peanuts! We're definitely relieved to have no allergies on top of everything else going on. It does, however, mean that his PFD is 100% behavioral. That may or may not be a good thing once he starts treatment.

Secondly, his therapy is going very well. His OT, Leslie, no longer works with him at meal time but instead they play with pretend food. He's doing very good and seems to really enjoy himself during his therapy. He's definitely a crazy kid though as he insisted on wearing his Halloween costume yesterday during his session. It was rather amusing to watch a dragon pretend to eat pizza. Love that kid!

His speech is getting so much better. Although most people don't understand anything he says, people that are close to him are having a much easier time identifying about 35% of what he says. He's even starting to use small sentences and referring to himself as either "I" or "me." There isn't a day that goes by that he doesn't make me laugh about something he says. Yesterday he heard me tell Daphne that she was driving me nuts (she was SO fussy yesterday). She was crying while I was making her bottle he informed her that she was "drive nut Dat-ney."

Today he went to a pre pre-school class at Infants and Toddlers. It's a 6 week long class for kids ages 2 1/2 to 3. He didn't do incredibly well but I'm proud of him for at least trying it. He did very well until they had a structured activity. He wasn't used to that sort of thing so he spent most of circle time crying. He did apparently really enjoy gross motor play and the end circle time dancing. He refused snack but we were expecting that. I'm really excited to take him back next week to see if he improves. All in all I think he had a good time playing with the other kids.

Well I'm off! Taking the kids to the fair with a very good friend of mine!

Three French Fries

That's what Jack ate this morning. It may not sound like anything amazing to you but to Steve and I, it was wonderful. Granted, it took a WHOLE lot of ketchup but he did it on his own. No one was pushing him to try one, he just grabbed one, dipped it in ketchup and took a very small bite. All in all it took him about 20 minutes to eat 3 small French fries but I'm not complaining! It's little things like this that give me hope that the program at KKI will help him. He knows how to eat, he just doesn't. It's entirely behavioral. And little breakthroughs like the one today reassure me that one day he'll be a "normal" kid at a lunch table in elementary school, eating what I packed for him and talking to his friends. 

Sorry, I just needed to brag today. 

Rantings of an Insomniac

I haven't been able to sleep for a few weeks. At first I thought it was just because Steve was gone and I was nervous about Jack's KKI appointment. Now I don't know what to think. I do know that last night's inability to fall asleep before 11 pm was a direct result of thinking about Jack. He was curled up next to me in Steve and I's bed. He was slowly falling asleep while watching Monsters, Inc and snuggling with Theodore and I got to wondering what his bedtime routine at KKI would be like. If Steve and I aren't there, who's going to give him his bath and make his sudsy mohawk? Who's going to brush his teeth and sing the toothbrush song? Or read his favorite 2 or 3 or 4 or 5 favorite bedtime stories? Or give Theodore goodnight kisses too? How can I be okay with some "stranger" putting my baby to bed?

Although I don't know much about what his schedule will be like just yet it really started to sink in. He's really going to be somewhere other than home for 2 months. I don't know how to feel about that. My heart breaks for him because I know what a long and challenging program he's going into. But I also know that they have amazing results.

And then there's Daphne. How do I say goodbye to her for 5 days a week while I stay with Jack at KKI? I feel like I'm torn between the two of them. I know that Jack will need me more so I'm going to be with his as much as they allow me to be there and probably a bit more. But what about Daph? She's going to be put in daycare so Steve can keep her by himself for 2 months. They'll come out on the weekend. I can't imagine how this is going to affect her too. I guess it just proves that what's going on with Jack doesn't just affect him, it affects the whole family. I think we'll all be changed after this.

But there is one thing that is certain, once Jack has completed the inpatient at KKI, we're taking our babies to Disney World.

Small Update

Daphne had her 9 month well baby this morning (17 lb 12 ounces and 27 inches long =] ) and we saw hers and Jack's primary care provider. Let me preface this by saying, I love this woman. Seriously. We saw countless doctors in Germany and a few here that didn't care about Jack's issues. She does. She's amazing. Anyway, we were talking about Jack's KKI appointment and what they had said. Without me saying a thing, she offered to call Tricare on our behalf if they denied his treatment. I'm telling you, I love this woman. 

She did Daphne's check up (she's perfect!) and sent me over to get paperwork to enroll in the Exceptional Family Member Program for Jack. Enrolling him in this will open lots of doors as far as his treatment goes because it shows the insurance company (and the Army) that he's "special needs."

Speaking of insurance companies, Kennedy Krieger called me back today (I had called with a question about his referral to NBU) and told me that Tricare will pay for his inpatient treatment. She didn't tell me how many days they approved (they usually only approve a few at a time) but she did say that with Tricare they would only pay for inpatient and not for his to do the day patient. So I guess we're 100% looking at in patient. 

As happy as I am to have a few answers, knowing that its really going to happen has sent me reeling all over again. 

I'm signing off, Jack has Occupational Therapy early tomorrow morning which means that this afternoon and evening are spent getting my house "Therapy Clean."

Just Some Thoughts

In my experience most people make the assumption that Jack is just an extremely picky eater. And though its not as simple as that, he is. He's 27 months old and eats less than 10 foods. His current diet includes GoGurt, Applesauce, Stage 2 fruit baby foods, Gerber Puffs, Gerber Fruit Strips, Graham Crackers, Popsicles and Fondant. (Yes my kid that doesn't eat anything can tear up some fondant, he's a weirdo, what can I say!) He drinks 1% milk, Pediasure, Apple Juice and water. 


According to the Kennedy Krieger Institute's website on Feeding Disorders, "A child with a feeding disorder may only eat a few foods, completely avoiding entire food groups, textures or liquids necessary for proper development."  
Here's a link to the website =] Pediatric Feeding Disorders- Kennedy Krieger Institute



In Jack's case, his symptoms include: trouble/refusal to accept or try new flavors or textures, severe meal time tantrums, and refusal to eat certain food groups. 


Mealtime is not a fun time at our house. A typical meal with Jack can go like this:
He gets into his highchair and is presented with his meal.
IF its a non preferred food, he immediately throws it on the floor, starts screaming and beating his head on the back of his highchair. 
IF its a preferred food, there is a 50/50 chance that he'll try a bite. 
IF its two preferred foods mixed together (graham crackers IN GoGurt) there's about a 10% chance that he's going to actually try it, even if he watches you put the yogurt in the bowl and then show him the graham crackers that you put in)
IF he does eat what's offered (again, only about 50% of the time) he'll finish, hand me his bowl and spoon and get down and play. 
IF he doesn't its a fight to try to get him to NOT throw it on the floor. He'll scream until his face turns purple and start crying. He'll cover his face with his hands so you don't try to make him take a bite and he'll beat his head on the back of the highchair. 


It usually doesn't end there. Once he's out of the highchair the tantrum can continue for up to an hour. He'll walk around and throw things and knock things off tables. He'll throw himself on the floor and beat his forehead on the ground until he bruises. He'll hit himself in the face, pinch himself in the arms and bite his fingers. 


All of this is just after ONE meal. Multiply that by 3.

I have to say, I'm surprised that I'm sharing this. In the last few months we've avoiding having people around at mealtime because I was so embarrassed of his behavior and I was terrified that people would assume his behavior was a reflection of our parenting. As hard as its been to deal with this and to go see all the doctors and specialists and to hear things that we didn't want to hear, I learned one thing from it all... 

We didn't do this to him. His non- eating is NOT our fault. 

Let me tell you, its been a LONG, HARD road to admit that to myself. There were many, many, many days where I felt like a failure as a parent because of his non-eating and his tantrums. To be able to admit that it wasn't us makes me feel... freer. Now that I've (we've, Steve included) admitted this, I feel like we're 100% ready to move forward and to  get him the help he needs. 

Well, he certainly doesn't LOOK like...

he misses meals. Seriously. That's what someone said to me today. I've been sitting and stewing about it since it happened. Now that I have this, I figure I can write out some of my frustration.

Usually when you think of a Feeding or Eating Disorder, you think of a thin, frail, malnourished person. It's hard to explain to people about Jack's eating. Most people aren't aware that this can even happen to a toddler. But it can and in our case, it has. And its affected our entire lives. We don't really go out to eat with him. He finds eating anything (other than a popsicle) to be a chore, something he's required to do but doesn't want to. If we do go out to eat, we try to either go to a place that has something else for him to do (ie, Chik Fil A has a play place that he'll play in while we eat) or we try to be in and out in 30 minutes or less. For awhile we were doing okay just avoiding restaurants but we've recently cut out going to birthday parties to. It seems that people just can't help themselves to try to get him to eat something, even after we've told them that he doesn't and asked them to not. They just don't understand. To them they're just trying to get him to try pizza or whatever. They don't understand that just by offering him a non preferred food, it could cause him to refuse preferred for a day or so.

As annoying and frustrating as the previous situation is, NOTHING makes me madder then when someone finds out about his PFD (Pediatric Feeding Disorder), looks him over and says that he LOOKS like he's NEVER missed a meal. Seriously? You can tell by looking at someone that they've eat 3 square meals a day? My son isn't thin or frail or malnourished because we work hard to make him NOT. He gets a PediaSure a day to pump him full of calories and give him vitamins. Without that he loses weight. Starts having worse behavior. Looks sick. We take steps to make sure he's as healthy as he can be given that he doesn't eat a balanced diet. I hate the general sterotype that to have an eating disorder you have to be thin.

Sorry for the ranting and the venting. I guess part of this blog is to educate people. So that another Mom doesn't have to be told by a stranger that her son is "too big to supposedly not eat."

An Introduction

I started this blog with a very specific purpose. To keep my family and friends updated on Jack's condition and treatment and to hopefully provide some support to someone else that might be going through the same thing.


My son Jack is 27 months old. He has the brightest blue eyes I've ever seen. He is loud and active and a little crazy and the sweetest little boy on the planet. He is crazy about cars and Cars and anything on wheels. He could watch Despicable Me or reruns of the Imagination Movers all day long. He's into everything, loves to climb and dance and laugh. He does the Hula and goes crazy at the end of Despicable Me when Gru dances. His best friend in the whole world is a giraffe puppet named Theodore. He currently refers to him as Dude and they do everything together. The only thing that my little man doesn't do is eat.


Jack was a perfectly healthy newborn. Born at 40 weeks and 3 days, he was the most beautiful thing I'd ever seen. He hit all his milestones early and we started him on solid foods at 3 and half months. He was curious and willing to try anything. I have video of him eating toast at 5 months old. He liked everything except green beans and peas. He was awesome. At the time we were living in Germany. Three thousand miles away, back home in Frederick, my Mom was fighting cancer. As soon as we had Jack's passport I started flying home for 6 week increments. After every flight Jack got an ear infection. A week of antibiotics would clear it up and he'd be back to normal, until December. We flew home on December 27th, 2009. Within a week of being home, his normal ear infection hit. But this time it was bad. Bilateral. He was in a lot of pain and started refusing formula and food. It lasted over 3 weeks. He was on 3 different types of antibiotics by the time it cleared up. After that he refused to eat solid foods. He was 8 months old.


By the time he turned one, we had gotten him to start trying bites of Stage One baby food. In addition to his food refusal, he started having terrible temper tantrums. He'd scream and beat his forehead on the floor. They would last for 30 minutes or more at a time. At his one year well baby, we brought up this new behavior and were told that it was because he was a boy and that he'd grow out of it in a few months. He never did. Fast forward to now, 15 months after his one year check up, we've been seen by ENTs, Allergists, Speech Pathologists all in the hopes to figure out WHY he doesn't/won't eat.  He's in weekly Occupational Therapy for his eating, bimonthly Speech Therapy.


Two days ago I took him to be evaluated by the Feeding Clinic Team at the Kennedy Krieger Institute in Baltimore. After watching him eat and throw tantrums they are testing him for Wheat, Soy, and Dairy allergies and for Celiacs Disease. They recommend that he be admitted at part of their In Patient Intensive Feeding Clinic, for 6 to 8 weeks. In addition to that they referred him to be evaluated by the Neurobehavioral Unit for his temper tantrums and head banging. He'll be evaluated to see if he is on the Spectrum and has ASD or perhaps just has PDD-NOS.  As of now we're soaking it all in.


I think this is a good start to this. I don't want to be too long winded but I'm hoping that this gets everyone up to date with where we are and some background on what we've been going through.