Parker...you're room is waiting

Remember last summer when we did this for the 4th time??? Well, this Friday Parker will be going in for his next EGD (#5) Friday morning to check his EOE. We'll also be checking on his fundoplication, since he's been complaining of some pain in his chest. So, we'll be checking in to Boys Town early. We'll follow up with both allergy and the GI doctors in a few weeks and see what final results are and where we go from here. I'm hoping for a quick day, some decent coffee and maybe a nap in the afternoon. If you've got extra happy thoughts or prayers and want to direct them for any of those things, we'd happily take them. An update to follow soon!

The Parker Update

BIG things have been happening with the little man. Big. Huge. Here's his latest list!

His scope results are in. His EOE is much improved! His esophagus is less inflamed, less swollen, less streaking and his biopsies showed extremely low counts of those cells along his digestive tract. Score!!!
He did great with surgery, spent the day hanging out with me and running a few easy errands afterwards - he does so well with these easy procedures and I'm beyond grateful they don't take him out for a whole day or more. Payton went with us to the appointment and helped talk him through the whole thing since he was a little nervous. We stay with what we're doing for now and will go back in a year and do another scope. We've never had a whole year between follow-ups with anyone.

After almost a year of working with OT for sensory things with noise (mostly) he's made huge progress! School buses that dropped off and picked up kids in the afternoons at respite care were a major source of anxiety, fear and problems for him. With school just starting and the buses being back....we've been problem free. We have to do a lot of talking about all of it to get through it and walk past them, but no major meltdowns. And in other fantastic sensory news, Parker did something else major - he went in a bounce house. Actually inside. We were out at a carnival and they had a small one that was just for little kids - 3 years old and under. The compressor for this one was much quieter and we were outside. There weren't any other kids playing in it. The girl running it agreed to let him take his puppy in with him, and of course he had Payton with him. He didn't stand up or jump around, but he went inside on his own and there were no tears, no fear, no anxiety. "Mom, I did it all by myself. I'm not afraid anymore."

And with our teachers help, Parker was the first kid in their class to be put in potty training bootcamp. He went first and several other kids who were having a hard time with started following along too. It's been good for us to have the extra support and them on board too since they spend all week there. So I'm claiming him potty trained, and about a 50/50 split on nighttime. I will take it! Our biggest issues have been when he's getting tube fed, but we've got it down to a system now. He's doing awesome and gets a little better all the time. Super job buddy!!

Parker Procedure Update

Friday was another early morning for Parker and I at Boys Town. We've been on a routine of meds for his EE for several months (it's a little exhausting). The things with EE is you can't cure it, and there's no way to tell what it is that makes it worse or causes that allergic reaction. So that leaves us trying to find a medication regiment that will help alleviate those symptoms and make it easier for Parker to eat.

It's a drive but I absolutely love the West Boys Town hospital. It's a beautiful facility and the staff are absolutely wonderful. Parker and I got lucky and bumped up in the schedule by half an hour (Yay!) and things moved very quickly after we were admitted. Dr. Kunnath came in and we chatted, he played with Parker and sat on the bed to watch Mickey Mouse with him. I'm so grateful to have found a GI doctor this fantastic.

Once Parker was ready to roll, the Child Life Specialist came in and showed him the anesthesia mask, let him pick what color tape he wanted for his IV, and read a book with him. The in an effort to help Parker's giant tantrum I knew was coming when they took him back, she brought him a bubble gun. She told him to shoot bubbles at the doctors when they came in. He figured it out really quickly and started yelling "wook it!" to everyone that came in. They let him take it back to surgery with him, and he got to keep it until the moment we left. It made things a lot easier for him to go back to surgery.

Of course the anesthesiologist always comes in to talk before procedures. He came in and asked where he had had his previous major surgery (the fundo and g-button) at. When I responded it was at the Med Center, he immediately confirmed it had been with Dr. Abdessalam. When I said yes, he told me he had been in on that case and remembered us. He started saying details from the day (which I remember vividly), Parker's medical history, and us. I was floored. He gave me a very nice smile and said it was nice to see us again, it was a treat he doesn't usually have a chance at.

He carried Parker back to surgery in a blanket (holding the bubble gun) while singing him a song. 

He came back after the procedure to tell me everything had gone perfectly. He said "it's been a pleasure" when I got a big hug. When he walked out of the room he gave me a sweet smile, and I stood there stunned and started to cry a little. How lucky are we that the same sweet, gracious person can appear twice in life to help Parker - once to live, the other to thrive? (I still have tears thinking about it now). 

Parker's scope appeared normal. Now we wait for biopsy results - they took 6 samples - and a follow-up appointment with Dr. Hopp. Thanks for all for the prayers!

The Dude

We finally had Parker's update after his last procedure. Here's the skinny-

His EOS wasn't taken care of by being on twice daily Prilosec. In fact, his counts of bad cells in his esophagus are actually getting higher. And now there's evidence of these cells in his stomach as well. Not the best news. This is not something that goes away or he will outgrow. You can treat it, but you can't cure it.

So we will continue on with the meds we're already on and add another twice daily one to the routine.We will go back in 4 months for another scope and another set of biopsies. So we carry on, and see if we can make it easier for the little man to eat.

Here's his mug shot from the weekend - covered in dirt, bubbles, and sidewalk chalk. And not overly happy that mom's taking his picture.

Eating, sleeping, and pooping

These are known as the things babies are famous for...or things that we have updates on. So grab a drink and here we go.

Eating - we finally had our meeting with the allergist about all Parker's procedures in November. He has eosinophilic esophagitis (EOS). These are the same type of cells that cause people to have asthma or hay-fever, but Parker has them in his esophagus. We've been put on two different medicines - one to spark more appetite hopefully, and an anti-reflux med - and then he'll be scoped and biopsied again in February to see the results. They are trying to determine which type of EOS he has to determine the next course of treatment for this. EOS in his esophagus can make it uncomfortable to swallow or irritated by any reflux symptoms.

Sleeping - This momma got some sleep! For Christmas, Chris gave me a gift certificate to have the night off and get a hotel room by myself. I also got gift certificates to get dinner while I was gone, and coffee on the way home. So last Friday, I went straight to my hotel room from work. I ate dinner in my jammies while it was still hot in one sitting without having to share with anyone. I watched crappy t.v. I slept. Since the kiddos still have yet to make it through the night all the way through without waking through the night, I hadn't had an uniterrupted nights sleep in 2 years, 3 months, and 13 days. It was fantastic! 

Pooping - Payton has suddenly started having some major problems. Major. This has all come on out of nowhere with no real explanation. We had to go check in with the doctor this morning. We had a physical examination by the med student and the pediatrician, then were sent on to rule anything out. A blood draw and quick x-ray ruled out anything awful so now we have a few new tricks to try. Hopefully we can avoid anymore screaming and horrible episodes. 

Half way through another week...one week closer to spring! Stay tuned...more on the way!