Some Results

The kids' GI doctor called me back Friday afternoon, well actually the nurse did but the GI walked into the room just after she asked for Little Man's mom and he got on the phone lol. He saw the biopsy reports, but didn't have them in front of them. The great news - NO eos in Little Man - he DOES NOT have the issue Beans does with food! And I don't have the official word, but it seems that Beans is in remission from his EE too! That doesn't mean he can eat whatever (boy do we wish), but it does mean that taking away all the food let his body heal and he's not having eosinophils actively attacking his GI system right now. One of the kid's biopsies, I was a little confused at to which one, but I'm assuming Little Man, did show damage due to reflux and we don't have any of the results of the impedence probe that checked for the actual data on how much he's refluxing. GI said he'll call me back this week with the full reports in front of him and we'll know from there how to proceed.

Waiting on Results

Hopefully tomorrow Dr. B will call with the results of the kids' biopsies and Little Man's impedence probe. Then maybe we'll know if he's going to need a revision of his Nissen fundoplication (stomach surgery) or not. I wouldn't be surprised if the probe didn't show much since he hardly ate or drank for the whole 24 hours it was in, but we'll see.

Our trip to Sea World was nothing short of fabulous. I rode both the Manta and the Kraken with Little Man while Grandpa entertained Beans (who was quite happy that Grandpa doesn't like exciting rides either). The Manta was awesome, the Kraken was a bit too "shaky" for my likes but Little Man loved it even more. My little daredevil.

Little Man had a couple of "hiccups" that weren't much fun to deal with, but honestly, he did pretty darn good. Grandpa was such a good sport and when Little Man was trying his hardest to tick us all off (okay, he wasn't but sometimes it sure seems like it), I was able to step away with Beans for a minute while Grandpa handled it.

We've been to Disney a couple times in the past, but I found Sea World the most enjoyable park we've been to. Not as many crowds and less sensory overload for the little ones. Add in the love of animals Beans has, and the heart for the environment Little Man has and it was a great mix.


We loved the shows and were able to make it to all the ones I was hoping to see - the dolphins, Shamu (of course) and the Clyde and Seymour pirate show. The dolphin show was my favorite. Those who know me won't be surprised I'm sure. The kids favorite was a toss up between getting utterly soaked at the Shamu show and the hysterical antics of Clyde and Seymour.

I learned a very valuable lesson this trip. This was the first time we ventured an outing without Beans' wheelchair. He's been doing so great, I was sure we didn't need it. He managed to walk through the parks okay. When he was dragging at the end of the day I didn't think much of it, everyone's exhausted after a day at an amusement park.

The next day the little sweetie paid for our day of fun big time. It started with waking before dawn with vomiting - a pretty impressive feat through his stomach surgery. Obviously not thinking, I packed us all up and got us in the car and on our way home....five hours away from the children's hospital. Not my best move ever. The drive home was miserable for Beans. He alternated between sleeping, being miserable, and more throwing up despite having his stomach constantly draining through his g-tube. By the time we got home and I checked his temperature it was over 104 and he cried with as little as a couple teaspoons of water in his g-tube.

We somehow made it through the night without needing IV fluids and he's bounced back pretty quickly. I definitely learned though - regardless of how great he seems to be doing, we always have to be aware that he is more fragile and take those precautions of using his chair and protecting him from the heat.

The next few weeks promise to be busy. I'm having very minor surgery, we have the impending results to determine if Little Man will be having his surgery, and all the details of preparing for our move. The goal is to be leaving Florida right about this time next month. Wow! Connecticut, get ready - here we come!

A Plate of Nothing, Please

Tonight marked an amazing event. Tonight Beans got to eat his first food in a year! His choice of his first food to trial - white potato. There are so many things you can do with just a white potato and some salt...and I'm sure he'll try them all over the next few weeks.

In anticipation of the big 1-0 birthday on Monday, we've stayed in Orlando a couple extra nights to go to Sea World tomorrow with Grandpa. We started the celebration of right, with a dinner out at Uno's Grill on International Drive.

Beans thoroughly enjoyed his french fries. They must have tasted like the best food you or I could possibly imagine. Our waiter was incredibly attentive and on one of his stops at the table, after Grandpa and I had assured the waiter things were great, Beans said, with a big grin on his face, "it would be nice if we could get nothing." We all giggled and the waiter went about his duties.

A few minutes later our waiter arrived at our table, prepared with a nice, clean tray of absolutely nothing and presented it to Beans. You couldn't have seen a happier kid for miles around - and we are in Orlando, home of Disney & Sea World after all.

A few minutes later a beautiful female waitress came by. "I hope I have the right table," she says. "I have a full tray here of absolutely nothing." My heart was about to explode at this point. My baby ate, we're enjoying time with my dad and the wait staff has been incredibly attentive to my son on his first day eating.

Then, up walks a young man. You guessed it - another tray of nothing for the birthday boy. We were all in fits of laughter at this point. No one at the restaurant had any idea just how special this moment was - and how much having tray after tray of nothing - when that's all he's been able to eat for a year - delivered to our table meant.

I requested the manager come to our table and, blinking the tears from my eyes, I told him just how special this night was and how much I personally appreciated the attention of his employees, especially our waiter. On our waiter's next trip I explained to our waiter just how amazing our night was and thanked him for making it even more special.

To all the staff at Uno's on International Drive in Orlando - thank you. Thank you for entertaining the whims of an almost ten year old boy. Thank you for making his night unforgettable. Thank you for making my son laugh so hard that all the tables around us were giggling themselves. Thank you.

Best Kids Ever

Today I couldn't be prouder of my kiddos. They were so well-behaved, had such good manners and were so very brave. For Little Man, we have had way too many days lately of this:

terrible tummy pain, overwhelming nausea, sprints to the bathroom after each time eating, trying to make it before he vomits and his eating has dropped off to almost nothing. Please, please let these tests show why. I hate seeing my little guy, who never complains of pain, in such a state.

The kids were such troopers. Beans knows the routine all too well. See his look of "whatever, here we go again?" :PHe was quite happy when anesthesiology decided he could wait until he was asleep using the gas before they placed the IV this time. The IV is his biggest issue with any hospital stay/procedure. I'm quite glad they waited since it took them 3 sticks before they got one to stay.

Brothers waiting their turn

Beans scope went great, his insides look wonderful and as long as the biopsies come back clean - HE GETS TO START FOOD TRIALS!!!! OMG this is the best news he could have possibly gotten. He can't wait to be allowed to start trying foods. The process is painfully slow, one food at a time for weeks at a time, but he doesn't care - he'll get to eat!

Little Man went next, and because of his tummy troubles, he had to have the IV placed before he went back. He too was so brave. The first stick went right in...and then right back out. The nurse said his veins were so crooked in his hands that the IV wouldn't stay. I haven't heard of crooked veins before, but whatever. :p She did the second stick in his elbow and that one behaved itself and stayed in place. All this with no tears, not even a flinch from Mr. Braveness.

They took him back as soon as Beans was finished. Everything went well with him too. His esophagus looked surprisingly good, his stomach wrap is still in tact, though we won't know if it's actually functional until the impedence probe test is read. He woke up calm and oriented and such a good kid. He didn't try to pull the tube out once.
Now he's supposed to eat, drink and play like normal until tomorrow afternoon when they'll take it out. We should have the results next week sometime. Then we should know if he's looking at a repeat Nissen or if his tummy trouble is from something else.Here's the bravest kid ever with his probe in place and little black box on the strap. His constant companions until tomorrow and he's handling them so well.

WTG Kiddos!!! You did awesome!!

Back to Orlando

Here we are, back at our home away from home - the Ronald McDonald House in Orlando. We got really lucky this time as they called this morning saying they didn't have a room available, but the other one a few miles away did. Just as we pulled up - literally right in front of - the other RMH, I got another call that a room had just opened up at our regular RMH so we could choose which one we wanted. We chose our regular one. :D Right next door to the children's hospital we have to be at bright and early tomorrow morning. No traffic to deal with, no driving at all, just a walk next door. :)

The kids can't have any more food or formula tonight, clear liquids only. Little Man, who has hardly eaten the past few days since we had to stop his Prevacid in preparation for his tests, is now insisting he's starving of course. He wasn't at 7:30 or even 7:45 (cut off was 8:00, he started asking for food at 8:06, it's now 8:30) but now he's starving to death. Thankfully he should be out for the night soon.

The drive down here was nice and uneventful. It tried to rain a few times, but never enough to even use the wipers. Little Man and Beans have gotten to be pretty good travelers. I'm getting them nice and prepared for our looonnngggg drive when we move. ;)

Keeping my fingers crossed for tomorrow. Little Man has had time when he's woken from anesthesia really agitated in the past, so I'm a bit concerned about that, and he's at a higher risk for seizures with anesthesia, but these tests have to be done and they're really all routine so it's no big deal. Beans has had a million scopes so I'm not really worried about him, though he did break out in hives tonight for the fun of it. :p If anyone has a spare set of hands, and an extra body for that matter, I'm sure I can use it in the morning. I've never done the 2 kids having procedures at the same time before, but no big deal, right? :D

Good Game

You know you're the mom of a special soccer player when:

~ You hesitate to sign your kid up with typical kids because you're not sure he can pay attention, be accepted, or if he'll take a blow to his self-esteem.

~ You don't mention the "A" word (autism) until after several practices because you don't want him to be discriminated. When you finally do tell his (amazing) coach, he shrugs, he's already figured it out. He responds by telling you "whenever I tell him to do something he tries his hardest and says 'I'm giving it my all coach' and that's all I could ask for from any player." Did I mention his coach is great? ;)

~ You are thrilled when your child surprises you by running up and down the field with his teammates, even if he is the slowest one, because dang it, he's trying his best and he's SO HAPPY!

~ The first time he kicks the ball in the game you want to celebrate. Who cares that the ball barely moved and it went in a random direction. He kicked it!

~ You get incredibly excited when he hits a header - and meant to!

~ A player from another team knocks him (yay! He was with it enough to be knocked around!) and the coach tells him not to take that from her and Little Man responds with a big smile, "I didn't coach. I pushed her back."

~ After the game they were short handed and didn't have enough players for substitutions, when you tell him before it starts that this is it, he needs to suck it up and play hard. He is so excited to tell you that he "stuck it up! He stuck it up there far!"

~ The coach cheers him every time he goes after the ball, kicks it, or is really in there. (Yes, he has an awesome coach.)

~ Hearing his teammates yell "Nice one Little Man" "WTG Little Man" puts a smile on your face that can't be removed.

~ On the night that everything finally connects - he's with it, he's kicking it, he's playing defense, he takes a couple headers, the coach is cheering for him, his teammates are yelling his name, other parents are encouraging him - you fight to keep the tears in your eyes from being seen.

~ And most of all, you come to the end of the season and you realize HE DID IT! HE LOVED IT! HE HAD THE TIME OF HIS LIFE! His teammates accepted him for who he is, his self-esteem has climbed about a hundred notches and you wouldn't have traded any of it for the world.

Little Man, you're a rockstar!

The Good Part

Tonight I got to do my favorite part of being a mom to special needs kiddos - I got to help out two other families going through similar struggles. While the kids enjoyed themselves, I talked to one mom whose baby is having a g-tube placed tomorrow. Beans even showed her his button and helped her feel much better about her daughter's new attachment.

Shortly after we finished talking, another mom pulled me aside. She had overheard me talking about the boys' Nissens (stomach wraps for reflux). Her son is scheduled to have one in the next few days and she was feeling very apprehensive and scared about it. I was able to talk to her about Little Man's and Beans' recoveries.

Then I remembered I had a Farrell valve (vent bag) up in the room. I'd grabbed it last minute, not really sure why - just in case I suppose. I ran up and got it and showed her how it lets someone be tube fed while still letting them vent (burp). She's been unable to hold her son for 10 days because he currently has a syringe rigged across his crib. I gave her the bag and she's going to have the hospital get some for her son. Thanks to the knowledge and help others gave me, I'm hoping little D will be snuggled back in his parents' arms very soon.

To end out the night, the Sheraton Vistana provided dinner at the RMH and brought along FUN! A lady painted the kids' faces, the two below (Christina and Sally) did magic tricks and taught them to juggle. Christina just had an NG tube placed 3 days ago and is undergoing treatment for thyroid cancer and a benign growth in her head so Beans loved discussing how nasty nose tubes and PICC lines are with her. It was great fun. I'm so glad we decided to spend one more night here before heading home in the morning.

Making Progress

First the greatest news: Beans has grown 2 inches and gained 5 pounds in the last 9 months! WTG little guy! The GI and dietician were thrilled with it and the dietician gave me some information about avoiding heat illness since Beans definitely struggles with that. They increased his feeds from 300 to 330 ccs (10 to 11 oz) 6 times a day to keep up with his growth and activity level. Everyone is thrilled he's playing soccer and loving it! :D

The rest of the appointment could have been titled "to be continued..." As I was suspecting, both kids need to be scoped and Little Man needs an impedance probe. The GI tried to get them in tomorrow, but they're booked solid so we'll have to do a return trip in just under two weeks. Bright and early the 18th Beans will have his endoscopy - hoping for clean results so we get the okay to start a food trial! Immediately following Beans, Little Man will have his scope to check for damage to his esophagus, the status of his stomach wrap and hiatal hernia (repaired when he was 3), check for carbohydrate malabsorption issues, and check for the dreaded eosinophils. The doctor isn't too worried about EE (what Beans has), but we definitely have to check. While he's under for the scope, he'll also have an impedance probe placed down his nose and into his esophagus to check how much he's actually refluxing in a day. He had this test long ago, but he doesn't remember it and I'm sure not mentioning the nose tube thing until right before the procedure or he will freak out.

All of these tests on Little Man will tell us if he needs his stomach surgery repeated and/or if he has an eosinophilic disorder. We'll have to be here for two nights, but will be able to stay outpatient at the Ronald McDonald House.

Having two trips to Orlando so close together is quite a financial strain. If anyone has super fast fundraising ideas I would love to hear them. We don't need to raise too much, but we do need to pay for gas, food, and the fee to stay at RMH. We're trying to get things done as quickly as we can to have the kids as stable as we can for our move.

Just another couple weeks and maybe, hopefully, I can feed Beans again!

Hope in the Morning?

As we settle down for bed here in the Ronald McDonald House in Orlando, I can't help but have hope for the morning. When the kids see their GI will Beans finally be given the go ahead to start food trials - after nearly a year of NPO - nothing by mouth? Will the doctor or dietician have a good idea of how to get enough calories in him while still letting him be a normal little kid out playing?

And Little Man, will we find a way to ease his tummy troubles? The increased Prevacid has helped enough that he's started to eat again, but he's still bringing food up many times a day. It's hard to know when you're doing enough and when you need to do more when he can't let you in on what's going on inside that body of his very well.

So many questions, hopefully we'll have some answers tomorrow. This doctor has been really good about trying to schedule any tests Beans has needed while we're already in town so hopefully we can continue that trend as well, even if we need to hang out for the weekend.

The kids were great on the 5 hour drive down. We listened to almost all of Harry Potter and the Sorcerer's Stone on cd again. That sure helps the time fly. When we exited the turnpike my car tried to make a dash onto I-4 West on that last little jog to Sea World and Disney, but I was able to grudgingly convince it we had to take I-4 East towards downtown and the hospital. Beans desperately wants to go to Sea World for his birthday on the 23rd, but I just don't think I can pull it off. I hate being so close and still having to say no. Just one of those things though. :)

The kids are already sound asleep so I suppose I should follow. Hoping for good news tomorrow!