Pre-K...gulp

This has been a big week full of big steps and milestones. 

Tuesday night I had the pleasure of attending a meeting for incoming kindergarten parents. Yep…kindergarten. We got some of the scoop on dates and other things that are coming up and to consider. Holy. Smokes. (Thanks Honor for watching them!)

 Wednesday was a day for appointments. In the morning we hit the ENT for a check for Parker. His t-tubes in his ears have been in now for over 2 years. The ENT is ready for them to come out since there is no appearance of fluid and there is no concern over any type of speech delay. It is out-patient surgery to remove them and put a small patch inside his ears to make sure everything heals correctly.

 After a quick park break after the first appointment…

We headed to the pediatrician for our pre-K checkups. Here’s the latest, including everyone’s favorite – their numbers.

Parker is doing good. He passed his eye exam, and they confirmed that he has some super-sensitive hearing. Good that he can hear great, not so great when you’re a kid that deals with sensory issues. While he does have a list of diagnoses that are included on his note to school, he is cleared and there’s no reason that any of them will cause him any concern as he gets started. His g-tube site has healed wonderfully and there won’t be any need for medical intervention at this time – he’s sealed up and great. He did get his finger poked for blood and 2 shots. He is not nearly quite the stud his sister is at getting poked so it was slightly dramatic. He is a whopping 34 pounds, fully clothed and with shoes on which puts him on the at 3% on the growth chart (and gives him a BMI of 0.2%). 

Payton is doing well. She passed her eye and hearing exam with flying colors. She also has a list of growing diagnoses that will accompany her to school. She will continue to be followed by the Hematology doctors for a while. If school starts and she is still receiving drug therapy for her aplastic anemia, we will then go on exploring additional factors to take care of with the school nurses, but right now we need to wait and see what happens. She again instructed her nurses on how to poke her finger for blood. Because the vaccinations they were to get this time are live virus vaccines, and she’s still immune-suppressed, she can’t have any vaccines until she’s finished drug treatment at least 6 months. She spent her time with Dr. Woodford telling him everything he needed to know and correcting him about everything happening with her. She is 46 pounds and right in the middle of the pack for height and weight.

So they’re ready. Kindergarten Ahead and registration are in a few weeks. We’ll keep you updated!

P.S. We stopped at mom's new work so they could meet my new work friends. They were very happy. This would be the college graduating class of 2033. 

Already March...

I'm not really sure what happened to February. But it is already March. That means warmer days, longer days (we've survived daylight savings, whew!). Here's a quick "what's been up 'round here" kind of post...

 We met some new puppies at the Humane Society while we were there for a birthday party (how fun is that?!)

 We took Parker to meet Payton's doctors and nurses at one of her appointments. Thank goodness Aunt Bo could go help. 

It went from inches and inches of snow, to shedding the winter coats and playing when there wasn't one cloud in the sky this past weekend. 

 We played bingo using M&Ms, and cut Payton's hair big time!

We passed out Valentine's and special presents to all Payton's nurses in the Hematology clinic. 

Parker went to check in with the surgeons at Children's. He's been officially discharged! We celebrated with hot chocolate. Dr. A gave Parker the option of having him remove his tube in the office of having me do it at home. Parker chose to do it at home. So after dinner, we put on our brave, goofy faces and with a little help holding him down, I removed his g-tube for the last time. 

(And not to be left out, Payton made her silly face to go along).

Several people have asked about his stomach. Once the tube was removed, it took about a day and next to no drainage and it has completely sealed itself, so there won't be any need to go in and surgically close the site. The tube was in for just shy of 5 years. His stomach now looks a little like he has another belly button. Between his bowel perforation, other surgery for fundoplication and now this he's got 6 scars on his abdomen. I told him they were good practice ninja scars, which he seems to like. To celebrate the tube coming out, we decided to go out to lunch and go bowling - a major hit!

Not to be out done by her brother, 4 days later, during a regularly scheduled doctor's appointment, we got a surprise. Dr. Lowas said she's doing so good and hasn't needed any transfusions for a while that her picc line could come out. In one quick movement the nurses had it out and she was tube free too. She has just a little spot on her arm from where the tube was coming out. After 4 months of dressing changes and round the clock care of it, she was tube free.

This past weekend Payton and I had a little girl time and got to meet baby Oakley. Payton is now well versed in baby holding and working out her babysitting schedule with Victoria.

After 5 years, having kids without any tubes of any kind for the first time EVER has been a little weird. The closet once dedicated to medical supplies has been cleaned out. It is good, and a little odd, to have to shut off the little voice in my head that was always keeping an extra eye on those tubes. Let's hope everything stays that way.

Also, we're going through some growing pains here - new schedules, new people, new places. If y'all have a few extra happy thoughts, prayers, sparkles, or whatever else you have and wanted to throw a little our way, we'd happily take them.

January Sunshine (and few updates)

In the midst of all the crazy lately, Payton seems to be responding to her infusion therapy. They told us it would be 3 months before anything was decided. Well 3 months out and she hasn't had any infusions in 2 months. Her numbers are inching up little by little and we've been able to back off of her magnesium and cyclosporin. Yay! And I don't have to give her Neupogen shots at night any more - fingers crossed it stays that way. She does NOT like having to get her pokes at home.

Saturday we spent a few hours at the zoo. The sunshine and fresh air felt good. And we got to see the new baby giraffe who is soooo cute.

Tonight, Parker got upset about having his gtube. This topic is coming up a lot lately and seems to be a major source of anxiety for him. Tonight he wanted to know what super hero has one. Since not everyone has a gtube, and not everyone has super hero powers, they must be kind of like the same thing. So if anyone has some ideas for a super hero with a gtube, let me know!

Payton tonight had a breakthrough. As she saw a minute of the start of the Miss Universe pageant, she went on like this -
"Aren't those ladies so beautiful. I want to be like that when I get older and wear a fancy dress like that. But I don't know what I'm going to do! I want to be an animal doctor, a doctor for kids, a zookeeper, a firefighter and work in the clinic. I don't know how I'm supposed to do all of those things if there is only one of me!!"

Changes...big changes...are happening soon. Stay tuned!

The 4th That Was

It was a great 4th...with parades, zoo time, dinner eaten outside on a nice patio (as you do) and some time at the lake. 

How do you know you live in Iowa and you've gone to a small town for a parade???...horses, tractors and you get popsicles thrown at you to cool off. And it was great. 

She's the only one that would let me take their picture with the statues at the zoo. He was to distracted holding on for dear life on the carousel to notice the picture. 

At the lake to wrap up the weekend. It was hot and sunny and the boat watching was pretty good. Payton is turning all golden from being outside. I started calling her my little baked potato which she isn't too sure about yet. 

Parker spent time digging in the sand but also he went into the water. Let me repeat...Parker went into the water. In. Up to his armpits. In water. (Victory!)

He was also overheard saying after a boy made a comment about his g-button "he doesn't know it's hard for me sometimes and I have to practice". (Victory!)

And for a minute, right before he had a meltdown, he did good. (You can't win them all)

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!