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.

So Long, Farewell

Due to several reasons (which I won't get into too much now), today was the end of an era.

Today, the twins had their last day Children's Respite Care Center. They have gone there for almost 5 years, every day. 5 years. They have in so many ways grown up there.

We shared our 1st birthday here...

 We got loved on here...

We practiced standing here...

We learned about books here...

We started to love art here...

We played dress-up with friends here...

We played here...

We made first best friends here...

We were serious and goofy here...

We had our first field trip here...

We had special snacks here...

We had teddy bear picnics here...

We laughed and smiled here...

Dear CRCC,

You have played such a huge role in our lives. You were the answer to questions when they were so young and still so very tiny. You loved them, cheered them on and rooted for them - and did the exact same thing for me. You listened, helped, problem solved, and cared for them. You helped them learn to crawl, walk, talk and eat...and do so better than they ever were supposed to. They have excelled and you helped steer them. 

You nursed them when they were so tiny, through so many procedures, hospital stays, ER visits, and new medicines and diagnoses and helped make them well again. And every time you helped heal them, you unknowingly helped heal me too. 

You,all of you,  are a sweet, caring, happy place for us and you will always be. I don't know how you being to thank someone or explain how grateful you are when they take such wonderful care of you and your children. All of you are like our family. Thank you will never be enough. 

Until we come back to visit....

Amy

When we focus on our gratitude, the tide of love rushes in.
-Kristin Armstrong