Summer Vacation!

Summer vacation is officially here!  Today was Dawson’s last day of school.  I honestly don’t think he realizes just how exciting that is for a kid quite yet!

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He looks so grown up!  I just can’t believe it.

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It is virtually impossible for me to get a decent photo of those two these days!

Even though summer vacation officially started this afternoon, we’ve been pretending it’s summer for weeks.  Camp fires.  Outside almost every day after school.  Playing in the sprinkler.  Playing with the neighbors.  Playing with Parker.  Playing.  A lot.

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Dawson had a busy Monday earlier this week.  He initially had FIVE different appointments scheduled.  I cancelled one of them (PT) late last week.  The morning of his appointments, they called as we were getting ready to walk out the door to cancel his first scheduled appointment, which was actually a huge relief.

So Dawson “only” had 3 appointments on Monday.  He had another ultrasound.

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No change in his kidneys.  That’s great news! 

He had another Urology appointment.  They decided to try upping his dosage one more time on his pill for his bladder.  We honestly haven’t seen a ton of improvement at the dosage he’s at.  We will go another month on this dosage, and have a follow-up appointment for July 7th, when we have to decide where we go from here…what surgical procedure we want to try.

Our last appointment was with Dawson’s burn surgeon.  I wanted one last appointment to check everything over – skin on his legs, his back, ask questions about meds.  We got really, really good news from him.  Dawson’s skin on his legs is AMAZING.  It will always look like graft skin, and it’s going to be sensitive and easily hurt for a long time, but from a healing standpoint, Dawson’s body has over-achieved.  His skin is soft and pliable.  If I put my fingers on his legs and move them around, the skin moves WITH me.  That didn’t happen before January really.

We also got the ok to wean Dawson off of the pill that he currently takes 3x per day.  That’s awesome.  If we can easily wean that one, he’ll be down to 2 pills in the morning, and just 1 at night. 

We are just so grateful for this time as a family.  The boys are going to bed later than they should because I want them to enjoy as much of this summer as possible.  Is it possible to make up for last summer in this summer alone?  We’ll see.  :)

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Throw Back Thursday

One of my favorite videos of the kiddos, taken in September 2010 (Wes was 6 months old, Dawson was 22 months old). Dawson is making Wes laugh just by looking at him, and I love the way Wes stares at D, just waiting for D to pay attention to him.

PS – Sorry for the shaky quality. :)

Catching Up: A quick article in today’s Wisconsin State Journal

David is off to the store to pick up a couple of copies of today’s Wisconsin State Journal.  They have done a follow-up on Dawson!  Read it here:  Catching Up: Belleville boy active with prosthetic feet.  David Wahlberg wrote Dawson’s initial story, and he did an awesome job on this follow-up, too!

I think there is a photo associated with the story, but I can’t see it on the computer. Instead, here are the photos that I sent him to choose from…that’s right, these were all so awesome that I couldn’t make the decision myself!  :)

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Doing the rock wall on our play set at home.

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Dawson and Wesley getting ready to race down the slides

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Hope you are all having a great Memorial Weekend!

Edit – Just got the paper – second page!  No photo, so good thing I posted these 4 awesome ones!  :)

Mother’s Day

I’d have to say, this was probably my best Mother’s Day ever.  It started on Friday when I got a call from a radio station in Eau Claire.  My mom had nominated me for a contest (“Mom with the Most!”) with a very sweet email, and her entry for me won!  Besides winning a VERY cool prize pack (lots of pampering!), it was very touching to hear the wonderful words my mom said about me.

This year our big Mother’s Day celebration happened on Saturday.  We had my mom, David’s parents, and Bob, Nikki, and Parker over to grill out Saturday night.  The boys played outside for a good 5 hours straight that evening.  Go, go, go! 

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My favorite photo from the weekend.

The weather Saturday was perfect.  Sunny and warm, but not too hot.  Not too windy.  It was pretty much the kind of day that I spent all last summer dreaming about.

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On Sunday, we did our annual Mother’s Day brunch with David’s parents.  The boys were in really good moods for the first part of the car ride, but by the time we got there, they were both tired and cranky.  Dawson was saying that his legs hurt, and refused to walk, and Wes was saying that his side hurt, and refused to walk.  A nice gentleman walking by saw us with our camera and offered to take our photo.  I knew it wouldn’t go well, but I figured a picture with cranky boys was better than no picture at.  :)

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The boys perked up once we got into the restaurant.  Here’s the thing: both Dawson and Wesley have never (ever) had soda before.  When D was the hospital and we were doing ANYTHING we could to get him to eat, I offered it to him and he refused.  On Sunday, David and I talked about Root Beer and told the boys they could try soda for the first time.

Dawson took the first drink.  It didn’t go well.  He look so shocked, and then he spit to back out, so I ended up wearing some soda on my pants.  We couldn’t help but laugh – it was not at all the reaction I was expecting!  I just assumed he’d try it and love it and constantly ask for it, but nope.  I don’t know if it was the flavor, or the carbonation, or the combo, but D was not a fan.  Needless to say, when we offered Wes his taste, he said no.

As quickly as D had gained his energy, he lost it though.  I ended up the meal with a half-sleeping boy on my lap.  I was ok with that – I don’t get snuggles like this very often any more.

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Meanwhile, Wes sat on Grandma’s lap for a story, and David caught this super-sweet exchange.

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My Mother’s Day was capped off with a lonnnggg nap by the entire family.  I sure dread the day when the kids don’t nap!  :)

One Year

One year ago today, Dawson went into the hospital for 84 days.

But more than that, all I can think is that one year ago today, Dawson took his last steps on his own feet when he walked, so gingerly down the stairs the early morning hours of May 15, 2013. His legs, feet, and groin hurt, so badly that he couldn’t lay comfortably in bed. He wanted to walk though, because it hurt too much for me to carry him. Dawson walked himself down the stairs, hoping to get some form of relief.

There is a lot of it that I remember vividly…loading D up in the car to take him to the ER for the 3rd night in the row, but first having to stop to pick up Wesley from daycare. One of Dawson’s teachers asking me if Dawson was doing any better, and me beginning to cry because I knew he wasn’t ok. Wesley chatting happily for the first part of the car ride, and then realizing that David and I just weren’t putting heart into our answers, and so he slowly closed up.

There are a lot of things that I remember as an outsider. I see it happening in my head, but I can’t hear what is being said. Me standing outside Dawson’s room right after he got to the PICU, answering questions. The nurse sitting in the room with her computer those first few nights, when he was most critical. There was a nurse in there at all times – sometimes two nurses those initial nights. Never mind the revolving door of residents, fellows, and attendings from pretty much every specialty team there.

During Dawson’s time in the PICU, a gown was required by all visitors. And the first couple weeks, it was full isolation – gown, gloves, and mask. The morning of the 16th, we had no idea what was going on, but an impossibly tall doctor told me, as I stood next to D’s bed, holding Dawson’s hand, that it was likely my son would lose his legs. What do you do with that information? How can you possibly process that at first? They sedated Dawson so they could get his PICC line in and get him ready for plasmapheresis, but before they did, I crawled into bed with him and held him for the last time in what would be weeks.

I spent most of the day today looking at the clock and thinking “At this time last year, Dawson was (fill in the blank).” I wish I wasn’t torturing myself like this, but how do you stop? I imagine that a few years from now, this day will be just another day, but it’s amazing how raw it still is for David and me.

Of course, that’s OUR problem. Because Dawson doesn’t know the day. And Dawson doesn’t dwell on it like we do. We were told over and over (and over…) that this would be harder for us than it would be for Dawson. It was one of the more annoying things we heard (included: “How are you doing?” as I stood there crying, and “Kids are so resilient.”).

The reality is that Dawson remembers none of his hospital stay. Nothing of his 84 days, that we can tell. He understands he was there, of course, and knows all of the things that happened from what we tell him, but otherwise, he doesn’t remember it, thankfully. Wesley on the other hand…that kid has the mind of a steel trap. I was talking about someone the other day, and he said “Yeah, she came to see Dawson when he was at the Children’s Hospital. Remember? And Daddy stayed in the room with Dawson and we saw her in the kitchen. Don’t you remember?” Barely. How the heck does he?!

I left work a little early today, and when I picked up the boys, I told them we were doing something special tonight – family movie night. Wes looked at me like I was crazy. “On Thursday?” like I needed to be reminded the day of the week. I needed to be with the boys. Really, really needed to.

It’s hard to believe that D has gone from this:

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To this:

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(Yes, those are hockey sticks. Nope, not playing hockey. They are both pretending to be Casey Jones from Teenage Mutant Ninja Turtles.  OBVIOUSLY.)

In one year.

AFCH Radiothon

Two local Madison radio stations, Q106 and 93.1 Jams, are currently holding their Radiothon for American Family Children’s Hospital.

I’ve listened to these Radiothons every year.  And I have cried every.single.time.  (Sooo surprising, I know!)

Last year’s Radiothon happened within weeks of Dawson going into the hospital.  I remember putting in my headphones early one morning before Dawson woke up so I could listen for a bit.  I knew it was a bad idea – we were still in the stages of not knowing what would happen with Dawson’s feet, and we still hadn’t figured out the perfect cocktail to keep Dawson comfortable.  Still, I turned on my computer and listened to the live stream on 93.1.  And within about 10 minutes of listening, I was bawling.  The Radiothon looks for “Kids Club Members” – donating $15 a month makes you a member.  And that morning they announced they were looking for (12? 14?) Kids Club Members because the night before, that was how many kids spent the night in the PICU – the Pediatric Intensive Care Unit, the same unit that Dawson resided in.  I sat there and cried the “It’s not fair that my son is included in that number” cry that only a mama can do.

Anyway, I knew the Radiothon was coming up again.  David and I talked about it earlier this week.  I still managed to be caught completely off guard by it Wednesday morning, and ended up crying my entire way to work.  Oy.

Still, this is something that is beyond near and dear to my heart.  I cannot imagine what those initial 84 days (and the subsequent stays…) would have been like anywhere besides AFCH.  From family meals to child life to ohmygosh the AMAZING doctors and nurses (oh man, the nurses…who loved Dawson like he was their own)…I just can’t say enough about the care we received all around.

So, please…if you can donate, I encourage you to do so.  We’ve been on the receiving end of the wonderful care, and I can never put into words how much that hospital means to us.

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Finally, we are coming up to what I have been referring to as the “Year-Agos.”  This weekend is Mother’s Day weekend, and one year ago, Dawson was happy and healthy…and then days later, our life was flipped.  I am a bit like a ticking time-bomb these days, and I imagine the next week will only get worse as my mind replays (over and over) what happened last year.  One minute I’m fine, and thinking I can get through this all day, and the next minute I’m choked up and running everything I remember through my head.  So…I apologize in advance if I’m not quite myself the next week or so.

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So It’s May Already…

I apologize in advance for all of the rambling and random stories.  I’m feeling chatty today.  Perhaps making up for the radio silence?

The week before last we took the boys to a LONG overdue dentist appointment. (Funny story – not long after D was released to the hospital, we get yet another reminder call that Dawson and Wes were overdue for dentist appointments. I was tired, and annoyed that day, so I told the poor person who was calling exactly why making a dentist appointment wasn’t exactly a priority for me at that time. Not long after that, she called back and asked if they could send D something. I’m not sure what I expected them to send, but I certainly didn’t expect the giant cookie bouquet we received!)

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Anyway, the boys went to the dentist. The awesome news is that neither boy had any cavities! I was worried about Dawson – really worried – because of how sick he was last summer. He vomited so much that I was sure he’d have issues. But nope! His teeth look good, thank goodness. Poor Wes is another story. You know your kid is in for years of dental work when they start explaining orthodontia to you. Sounds like we are in for some dental work for Wes once he gets in his 6 year molars. Wesley’s mouth is SO cramped. His teeth are crooked, off center, AND his bite is funny; some of his top teeth go over his bottom, and some of his bottom teeth go over his top. Yikes! So basically, D runs up our medical bills, and Wes is looking to run up our dental bills. Sounds about right. :)

A few weeks ago, before Easter, Wes was diagnosed with a strep infection. They prescribed amoxicillin for him, and I asked Wes ahead of time if he wanted a liquid med, or a pill like Dawson. It was no surprise that he said he wanted a pill. I got a little a little pushback from the nurse (“He’s four. Are you sure he can take a pill?” – Of course I’m sure!), but they prescribed it. Wes was so proud to be taking pills like a big boy. Pretty sure one of the first things he told my brother was “I’m taking meds like Dawson!” He’s so funny.

Dawson and Wes are really into listening to their favorite songs on youtube and watching the videos. They are big into the movie Frozen, and can sing all of “Let it Go.” Dawson even tries to hit the high notes. It’s the best. I didn’t realize how into the movie the boys were until the day I was in the bathroom and there was a knock on the door, and then Dawson sang “Do you want to build a snowman?” Pretty sure I laughed so hard I was almost crying.

Wesley has had some funny moments in the night. There was one night I was sleeping with him last summer where he started clapping in his sleep. Last weekend he was sleeping with me when I woke up to him saying “Mommy…high-five!” in his sleep – and sure enough, he was laying there, eyes closed, with his hand outstretched. I gave him “five” and he put his hand back down and didn’t make another peep.

Dawson is doing awesome overall. He’s really getting better at wearing his feet. This past Thursday, he had his first PT session in a few weeks. He did amazing, as usual. He worked so hard that morning that he was visibly sweating and flushed about 20 minutes in. He worked on his balance by standing on a balance beam and using a “bat” to hit stuffed animals that were thrown at him. He ran down the hallway, and then practiced his posture by walking holding a 7lb ball. He ran on a treadmill for 6 minutes (probably a good 4 minutes longer than I could!). And he laid on the floor, legs up on a ball, stretching his hips.

D impressed us by still having his feet on when we picked him up from daycare that night. D’s limit is usually from 7am-3pm, and by 3, he’s done (pretty understandably). Thursday, Dawson wore his feet from 7am-7pm. Twelve full hours! He did great; he didn’t complain at all.

We also got a pretty neat ok at PT on Thursday: Dawson no longer needs to wear his knee immobilizers every night at bedtime. That’s awesome. D has been wearing the immobilizers basically since he went into the hospital, first most of the day, then off when he was not sleeping (still wore them for naps and bedtime), then only for bedtime. You never really think about the mobility of your knees until you see it first-hand. For those of us that walk every day, it can be a given that you can stand up straight, knees locked. For someone like Dawson, who wasn’t walking most of the time, his inclination is to keep his legs bent. Fortunately, Dawson is to the spot in his rehab that he is wearing his feet at least 50% of each day, meaning that there isn’t as big of a concern about him losing the ability to fully straighten his leg. Dawson’s therapist told us we could let him stop using his immobilizers, as long as we keep a close eye on his knees. D is SO used to using them that we let him decide what to do about it, and he’s decided to wear them every other night. Curiously, the only two nights that he’s not worn them since then have been his worst nights of sleep all week. It may take some getting used to!

Dawson’s first round of meds to help his bladder hasn’t done anything, much like his doctor suspected. D has six more days left of this round, and then we bump of the dosage. This will be the true test, since this is max dosage that he can go up to. I really hope it just gets him to the point of being dry in the day. Really, really hope. We’ll see.

Last week was picture day for the boys. We bribed them into wearing shirts with buttons by taking them to McDonald’s the night before. I must say, my kids are the cutest. Seriously. I was a little crazy on picture day. Last year Dawson and Wes had picture day right before D got sick. By the time the photos came in, Dawson was in the hospital and life as we knew it was changed forever. I had a hard time with the photos – I put them up, but cried every time I saw them for the longest time. And I was stingy, and never gave them to anyone. This year I wanted pictures to show what has changed in the last year, so I made sure the boys were both wearing shorts. I want D to be proud of who he is and how he looks.

We haven’t gotten the photos back yet (well, to be fair, they were taken 3 days ago, so of course we haven’t), but I’m so excited. I even made them pose for some photos before school. Look how cute these guys are!!

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Finally, our Sunday is shaping up to be pretty darn awesome.  David took the boys shopping today to give me some quiet time at home, but then he called an hour or so into it to say they were on their way home because Wes had an accident at the store.  They were home for about 45 minutes, and Wes was going into the bathroom for the 3rd time, and I started to get worried about a UTI or something.  And then I saw the 24 ounce water bottle of Wesley’s that I had sent with him when he left with David.  It was bone dry.  Turns out that in the hourish he was gone, he drank the entire bottle of water (it’s a new bottle.  I think it was a novelty to drink out of).  Crazy kid! 

When David got home with the boys, he got to work outside, cutting up wood and burning it.  The boys played outside for awhile, and eventually Wes made his way in to play trains.  As I type this up, Wes is playing quietly inside, and Dawson has been outside with David for almost 3 hours.  David is burning some wood we had lying around, and D is sitting (a safe distance) by the fire.  Dawson has complained a little of pain in his legs, but refuses to take off his feet because he likes being out with David.  He’s already informed me that he’s not coming in until “Daddy comes in too.”  Good thing I found the sunscreen!  We’ll probably see pretty easily tomorrow if I missed any spots…