Happy Halloween!

What do you do with two 2 year olds on Halloween? What do you get?

My lil greaser...

and my girly in her poodle skirt and sparkly shoes...

They are ready for a fun day at respite that includes a party, parade and special lunch!

Happy Halloween!

Surgery...table for one

So after a year of telling every doctor we went to that Parker really isn't growing too much, someone finally listened. I mean, when the clothes that were a little big on him last winter are still a little big on him and he still can't wear them, that's a little concerning. We saw a new GI doctor from Boys Town last week and he was amazing. We talked about Parker's history, feedings, growth, feeding tube, etc. and he agrees that somethings a little off. Its so frustrating to know something is wrong and no one else seems overly concerned. So in no time a decision was made - Parker will have surgery. On November 4th he'll be at the West Boys Town Hospital campus early for a procedure. He's having an upper endoscopy, 4 biopsies and will have a lot of blood run for lots of tests to be run. We'll be home later that afternoon sometime. Once the results from things are back, we'll have our follow-up appointment scheduled and talk about what they found and where do we go from here. So next Friday if you have a spare moment, send a special thought for the little man that things are smooth and we are home quickly. And the we will hopefully have some answers soon.

ABC's...

and A/Bs, GIs, BPD, FTT, O2, PTs, OTs...need I go on? Our life has been filled with nothing but letters for the past two years. I have a friend who started a company and makes great things for preemies, families and medical staff called It's A Preemie Thing. Love all the stuff. And Julie is an amazing person. For fun as we got close to their birthday I had Julie make shirts for them. They both say "I know my NICU alphabet" on the front and a very small list of the letters that pertain to them on the back. We've gotten tons of compliments on them from the doctors, respite care staff and even a couple of the parents that can relate who are there.

Thanks again Julie - these are definitely keepers!

The pumpkin patch

Last Friday, respite care set up a night at the pumpkin patch. I wasn't really sure how the babies would handle it. When we tried to do tried to do the swimming party a few months ago it didn't go so well. But this would be outside and I thought we'd give it a try. They LOVED it. Parker usually refuses to walk in public places. He won't even crawl when he gets mad if you walk away. He flat out refuses. Payton is usually a little nervous but does ok if she's holding onto someone's hand. At the pumpkin patch, they were both fearless. They took off in the very large crowd, weren't scared of any of the scary stuff, tried to get the hands bitten off by goats in the petting zoo area and were climbing  mountains of pumpkins. I wish we could have stayed longer but it got cold pretty quickly and at the end of a busy week, they didn't have too much steam left in them by Friday night. I'm not sure if we'll make it back there this season or if it will have to wait, but this is definitely on the to do list again!

The 2 year checkup

We had our 2 year checkup last week. Here's the lowdown -

Payton - Her lung are clear after being sick twince in the past month. We'll see how she does with her new inhaler as we start cold and flu season. We talked about lockdown for this winter like we've done the past two season. Have you ever tried to keep two 2 year olds entertained for months at home? So we'll just avoid the crowds and sick people, say a few prayers, cross our fingers and see what we get. She had to get her finger poked (which she did like a trooper and didn't make a peep) and a flu shot this time. She's not anemic this time which is good. In the future there will probably be a thyroid and bone age test done but he's not too worried about it right now. She has grown in all areas so there's no concerns there at all. She's 32 inches (8%) and 25lbs 13oz (37%). Not too bad for not correcting their age anymore.


Parker - Dr. W said that he continues to grow but not very fast, and pumping more calories into him won't make him grow. At some time in the future we may test his tyroid and bone age test done too. He also got his finger poked and a flu shot and it was quite a dramatic event. We talked about getting him off his tube. He gets enough calories from his tube feedings so everything else is extra, and he's only gained about 2 pounds this year so far (all his clothes from last winter still fit him, they might just be a little short). And he doesn't like to drink. We talked about changing feeding tube schedules. I'm still hung up on the weight gain issue so we are going to see a new GI doctor this week to talk about it. If they tell me that I'm crazy I'll back off for a little while. But that tube isn't going anywhere anytime soon. And his head has grown more this time so that is a good thing to not have to worry about that too. He's 31.25 inches (2%) and 22lbs 1oz (3%).

We have therapy this week and next week, see the GI on Thursday and then get ready for an ENT appointment the beginning of November to talk about another procedure for Parker. We'll keep you updated!

Happy 2nd Birthday!

We made it...their second birthday was this past weekend. Since they LOVE puppies, we had a puppy party. They had a great time. We had most the people who love them most ( we were missing a few), had cupcakes and puppy chow and spent the afternoon checking out all our new stuff. THANK YOU to everyone who came, or sent happy birthday wishes one way or another. We love you all! :)

Our first field trip

Last Friday, respite care set up a day to take all the toddlers to the zoo. Grandma took the day off so her and Aunt Bo went with as chaperones. They spent the morning there with their friends, their teachers and a nurse. After lunch outside there, they were headed back to school to get a nap and play for the afternoon.

Back to Pulmonology

Last week we had another check-in with pulmonology. She loves the bright color balls that line the sidewalk outside the specialty clinic entrance.

We had seen the actual doctor a week before after her latest ER trip. This was a regularly scheduled appointment with the physicians assistant. She is proud of her growth since we saw her in May. We discussed how Payton's had a rough summer (3 rounds of pneumonia). They said she's outgrown her steroid breathing treatment, Pulmicort, which she's had at least once a day (if not twice) for over a year. We've now moved on to an inhaler with a new medicine. We also talked about this winter. Scary time. They're both active toddlers and want to do stuff. I don't want them around mobs of people who don't wash their hands, touch stuff, sneeze and cough all over. I don't want her to crash and burn. Or her to take me with her. Our goal is no hospital admissions this winter. The doctor and the PA both told me to trust my gut and be vigilant this winter. Here's keeping our fingers crossed.


P.S. Get ready for lots of updates. We've still got to tell you about our first field trip, our birthday, and our trip to the pumpkin patch this week!

CRCC C.R.E.W. Sale

Are you doing your fall cleaning? Repite Care is having their semi-annual sale coming up. They are accepting donations of stuff. All the money goes back to the center to help support programs at the center. (Have I ever mentioned I love it there? And all the people.) Here's the details in case you're looking to clean house!