Hey all! So, we've had a few updates over the past two months and I know some of you have been wondering how things have been going. I will admit that I've been posting less because now that the boys are almost 10 years old, their friends can GOOGLE them, eek. So, I'm trying my best to share their lives in a respectful way. I know many of you have been on this journey with us for the past decade and have a true emotional investment, so I will definitely try to keep y'all up to date on some of the bigger things. So, let's talk about Mr. Jax and that feeding tube of his. He's been on a tube-fr ..read more

I've been waiting to give an update until we had some answers. Jax had an endocrinology checkup for his growth last Monday,  and we had to stop into the nutrition clinic for a weight-check regarding his tube-free trial. The endocrin-appointment went well with Jax's height hitting 23% now, which is great! But the doc could see that his weight gain has slowed down. I was nervous for what the nutrition team was going to say. The dietitian called me Tuesday to discuss the growth and as expected, she's a bit concerned that he's growing taller faster then his weight is moving (his weight is ar ..read more

It has taken 9.5 yrs to get to this point, but we are HERE. I had Jax at Childrens Hospital on Tuesday for his yearly check in with the Rehab Clinic for his muscles, so we stopped in the Nutrition Clinic for a weight check since we cut his tube-feedings in half last November. He gained (1.5 lb) since then with less feeds AND had the flu in there, so I thought it was worth asking for a trial with no tube. So I emailed the team and anxiously awaited their response. They responded today that we can do a 7 week trial of no tube-feeding, but Jax has to drink his carnation-milk before bed, which eq ..read more

Hello 2018! We had a pretty great year of health and development for these kiddos. We had a super busy December that I'm still trying to recover from! The boys played Joseph and a shepherd in the Nativity Christmas play, which was beyond cute. This was their last year for the play, so I soaked it up. We had Christmas celebrations back 'home' a few hours north a couple different times, so that was some driving back-and-forth on 3 different occassions. We had a really nice Christmas eve with cookie baking and a viewing of Home Alone, but then back up 'home' Christmas day. My brother and his fia ..read more

We are deep into the holiday season, and the boys are filled with the spirit of the season for sure! They really wanted a family dinner for Thanksgiving - sometimes it's just the four of us at home going out to dinner since other family is usually tied up and out of town. We headed up to my mom's house up in Green Bay since my uncle was home from across the country and had a nice little dinner. You can bet that Christmas threw up all over our house the next day and the boys couldn't be happier. The only Black Friday shopping that we did was for a washer and dryer to go into the mud room when i ..read more

We finally have the green-light for the first step of weaning from the tube at night! Jax had his GI/Nutrition follow-up at Childrens last week and I wanted to ask for a trial without the pump to see how Jax would do (the pump is the machine that Jax is hooked up to at night while he sleeps that feeds him). I knew in my heart that I would not be granted permission given his current weight (52 lbs), but I certainly expressed my yearning to try something. I thought of this when we were up in Green Bay staying at my mom's house a few weeks ago. I put Jax on the pump and forgot to take the clamp ..read more

October has been pretty cool (and cold, ha). We got up to Green Bay to see some family for my grandma's birthday, so that was nice to see everyone and not have to wait until Christmas! On our way up, we stopped at the dermatologist to have a spot on my arm checked out. Ugh. I had to have a quick procedure to have it removed. The doc was pretty confident that it was a keratoacanthoma, a type of non-aggressive skin cancer. Now if getting this done, while on your way back home to attend your 20 yr class reunion doesn't make you feel old... HA! Oh, life. So, I get the stitches out this week and t ..read more

Well, there went September and we're knee-deep into October already! We seem to have a busier than usual fall this year. September had me out of state for my cousin, Alyssa's wedding in Wichita. The following weekend we were out of town with the boys for Jason's cousin, Nick's wedding. Jay and I were able to sneak away the following weekend for our 10 yr wedding anniversary. We went downtown Milwaukee to just spend a little time together, and it was really nice. And that wrapped up September! October is proving to busy as well, but I think November slows down a little bit - so far :) This wee ..read more

Summer is done! We had such a fun and eventful summer, so we definitely feel full and are ready for the next season of change. The boys have settled easily into 3rd grade so far and seem like pros. Jax isn't too bad in the mornings, but I can tell we need to work on a few things again as we get back into the routine. We are so lucky to have decently easy mornings since the bus comes just after 8am. We had an interesting little loop of events with Jax and his leg. Last week he had complained that his left calf was hurting him and he'd hobble when he'd run. I kept telling him to just wait it ou ..read more

The kids are really enjoying the last part of the summer. We always keep our goals in mind as well, which we seem to be on a decent pace with. Goal 1: SWIMMING The boys have started level 3 swim camp this week, so they're finally 'learning to swim'!! It's kind of a pain to haul them (and shower them) every single day, but it's really the only way I see them learning. They've always needed constant repetitive coaching for many of their developments and this is certainly one of them. Goal 2: Learn how to tie shoes I've got one out of two kids tying shoes now :) You can probably assume which on ..read more