David’s Birthday

Thursday was David’s birthday.  The boys were SO excited to celebrate their daddy.  The night before his birthday, they helped me make the cake – let me tell you, Dawson is practically a professional at cracking eggs!  They love helping with stuff like that.

David has a good sense of humor.  We don’t have a ton of different shaped cake pans, but we happen to have a bunny shaped one (from the year we surprised my cousin Suzanne with four – or was it five? – bunny cakes for her birthday).  That was the pan he approved of for his cake.  The boys were couldn’t wait to decorate it, so Thursday morning, after David left, and before D got on the bus, the boys got to work.


Jelly beans!  Sprinkles!  Licorice!

They were so excited to show David Thursday night.  It was quite the “surprise” for David.  We got some REALLY cute photos.



The best part was when David went to cut the cake, and the boys immediately pointed out the pieces they wanted – Wes wanted blue sprinkles and some licorice, and Dawson wanted some of the yellow sprinkles.  Luckily, that was pretty easy to accommodate, considering the shape of the cake.

We had a lazy weekend.  Wesley and Dawson woke up with pretty nasty colds Saturday morning.  I thought for sure Wes was going to spike a fever, but after a really good nap, he seemed to rebound some.  Not enough to do much of anything, but enough that he was able to do more than just hang out in bed, watching TV.

As for the coming week, the boys are really excited for Easter.  A long weekend at the Lake House, and Parker’s birthday.  They can’t wait.

In the mean time, they are currently sitting on the couch, watching their favorite movie (this week), Smurfs 2.  The best part of this evening is their shirts.  A few weeks ago, David, Dawson, and Wes were so proud of their clearance find at Target – Despicable Me 2 shirts.  Of course, I didn’t have the heart to tell Dawson and Wes that, based on the neckline and the glitter, the shirts are actually girl shirts.  They would be horrified.  But how cute are they?


A belated Happy Birthday to David, my best friend and partner-in-crime…and the best Daddy these two minions could ever wish for!

About these ads


So this happened today:


Seven months after starting school, Dawson is riding the bus.  He was so excited to ride the bus.  In fact, he was supposed to ride the bus for the first time a week and a half ago, but then he woke up with that stomach bug.  This morning he was so excited to ride the bus that he started asking to play outside at 6:50 this morning.  I finally gave in to the boys at 7:10, and let them go out and play, even though the bus doesn’t come until about 7:35.

But playing outside is something that the boys used to do before D got sick.  On mornings that it was nice outside, they would play outside for 5 or 10 minutes before going to daycare.  They were excited to do the same thing today before D got on the bus.  They played a lot.



Going “fishing” off the “dock”…



Driving cars down the ramp…


And just being adorable in general…


Then the bus came, and Dawson went right for it.  He was a little confused about how to get on it at first, but he followed the neighbor boy on.  I followed him around in case he needed help…and to take pictures.  He had a sea of faces watching him, looking so excited for him.  It was the cutest.


The bus pulled away, and (shocker!) I cried.  Last September it seemed like something like this was a world away, and here it is.  And he did it like a champ.  Got on the bus and never looked back…literally.  The bus driver told him Carson was saving him a seat, and he was off.  He’s getting to be SO independent.

His appointment this afternoon went well.  We again went over what I briefly learned immediately after Dawson’s procedure.  We are starting a new med on Wednesday that will hopefully help relax Dawson’s bladder and allow him to stay dry longer.  The problem is that his bladder is small and scarred.  Scarred so much that I don’t think D’s urologist has much hope of it getting much larger.  For reference, he told me that a bladder on a kid his age should hold 175-200 (gallons? cups? cc’s?  I can’t remember the measurement and am too lazy to look it up) (obviously I know it’s not actually gallons) (or cups).  Anyway, his bladder, when he was sedated and completely relaxed, only held 110.  He estimated that when D is awake, that number is more like 80 for him.  And as a kid, his bladder should grow – 300 around 10, 500 around 15.  And right now it sounds like his bladder just doesn’t have those capabilities.

But we’ll try the meds.  Start small.  I didn’t even ask what our next steps are after meds, because I’m not ready for it, and his urologist is confident that these are the right steps.  So we’ll try the meds for a few months and see if he gets some extended dry time.  We go back in June, where he’ll get another ultrasound to see if the meds are allowing him to fully empty his bladder.  We go back in August for another ultrasound on his kidneys, but thankfully there is still no huge concern there, as long as they don’t worsen.

It’s Been Awhile…

We are still here and doing well.  Blogging seems to have taken quite the backseat to life these days.  We are busy, and when we are not busy, I’m usually asleep.  :)

The past two weeks have had a lot going on.  Dawson came down with a stomach bug the week before last, and it was a doozy.  He had a full 24 hours of vomiting, multiple times an hour.  Luckily, he was also doing well staying hydrated, so we weren’t too concerned.  We ended up call his pediatrician just in case the second day, but by then he was on the upswing anyway.  (It was nice to put in one last call to our awesome pediatrician, though!)  D recovered after the first 24 hours, but the bug lingered for days, so much so that he was still getting sick 5 days later.  Luckily, it’s a full week later, and not only is Dawson feeling good, but we also somehow managed to keep it contained to him – no one else got it.  Now THAT is a win!

As of April 1st, we officially switched insurance providers.  I probably spent a good 5 hours total on the phone with our new provider before the actual switch happened, making sure that Dawson would have the resources available to him that he needs.  I made an appointment for April 2nd for Dawson to have a meeting with his new pedi, so we could get the referrals process going.

On April 1st, something magical happened – Dawson’s new pediatrician called me.  Proactively.  He saw Dawson was on his schedule for the next day, and could tell it was a complex case that would likely take more than 30 minutes (our scheduled time) to talk about.  I missed his initial call, but when I called him back about 25 minutes later, he took my call immediately, and I did my best to give him an overview of everything D has been through since last May.  By the end of the call, he had a good idea of what D’s history looked like, AND he had submitted referrals for physical therapy, orthopedics, urology, and burn/trauma.  I was downright giddy that day – excited that our first impression is that we are going to get the same level of care with the new pediatrician that we received from our previous.

That 10 minute phone call made D’s appointment go SO smoothly.  There were things that I had forgotten about his history (I managed to forget to tell his new doc that D was in kidney failure when he was admitted), and I was able to better clarify some things.  But most importantly, by 3:30pm April 2nd, Dawson’s referrals were APPROVED.

With the good comes the bad – I tried my hardest to start making PT appointments before we actually got the referral, but all of the smooth talking in the world wasn’t allowing that.  So Dawson’s first PT appointment back at the place he initially went to is Tuesday at 8am…and his next PT appointment isn’t until May 5th!  They are booked solid, and we are on the cancellation list for any therapist at this point.  Still, I’m excited to get to this chapter.

Wesley has been doing great.  After almost a full year, the boys are FINALLY sleeping in their own beds again.  About 50% of the nights, Wes sleeps in his bed without getting out, and the other 50% of the time, he comes into our room once or twice (or three times…).  Baby steps, but it’s pretty awesome.

Today was a really big day for us.  Probably more so David and me than the boys.  We took the boys back to the Kalahari for a few hours.  My sister Maria had a dance competition there, so we went to watch her dance, and then let the boys play some games.  Watching Maria dance was awesome – it was so fun to see, and she did amazing.  The boys were really excited to see her and Grandma Mary, but they weren’t so into the dancing…they were way more excited to get to the games.

I was surprised – I thought for sure I’d cry, or get teary, or feel wistful, or something.  But the boys were so excited to be there, and THEY don’t associate the Kalahari with D getting sick any more, so it made it so much easier.  We played games for just a little bit (the boys were up late last night because of the Badger game and were exhausted), and then headed home.  It was a nice way for David and I to get used to going there again.




Who needs PT when you have games like this at the Kalahari?



Dawson does have a busy week this week.  He’s doing something special tomorrow that I hope to have some awesome photo updates of…we’ll see how I do.  Additionally, D has his post-procedure visit with urology tomorrow.  This is where we’ll discuss new medications, options, etc.  I’m looking forward to next steps, and I’m not looking forward to rehashing everything we learned a few weeks ago.  That double-edged sword of working to fix the issues, and being reminded of the issues in the first place…

Finishing Out the Week

(I guess at this point we are starting out the week, rather than finishing it, but oh well…)

It was a rough week.  A LONG week.  I was an emotional mess for most of it.  I did a lot of avoiding people, and a lot of not-talking about Tuesday.  (And some people bore the brunt of my not-wanting-to-talk-about it by getting attitude from me and an apology email later…sorry guys.)  Luckily (and I use that term loosely), I had a cold that wreaked havoc on my voice, and I think it hid my cracking, faltering, trying-not-to-cry voice more than once.

Unfortunately, our week got harder before it got better.  On Thursday Dawson and Wesley had their well-child checks with their pediatrician…Dawson’s only 4 months late.  We had some silly moments in the waiting area before going back to the appointment.


This photo isn’t particularly interesting except for the fact that David was reading a Men’s Journal and Dawson and Wes were convinced he was reading a “GIRL magazine!!” because of the woman on the cover.


Wes learned how to wheel Dawson’s wheelchair.  He did a great job!

The hard part of the afternoon came when we went back to the exam room with the boys.  After months (literally months – since September) of talking about it, and going round and round and back and forth, David and I decided to switch insurance companies.  We need to change where Dawson gets his physical therapy.  D’s therapist now is great, don’t get me wrong.  But she doesn’t have experience with amputees, and Dawson is at a stage where it is crucial that he gets the best therapy out there for him.  So for us, that means switching insurances, in order to get to the clinic that has worked with child amputees.

What it also meant was losing Dawson and Wesley’s current pediatrician.  It was what made the decision so dang hard.  We LOVE him.  And we LOVE his nursing staff.  I picked Dr. E purely based on location when I was pregnant with D, simply because he was in the same building as my OB-GYN.  He’s been with us from day one.  And I didn’t know it that day, but we picked a fantastic doctor and a fantastic office.  When the boys were both little, it felt like I was calling the office every other week trying to see Dr. E for ear infections.  Out of all my zillions of phone calls, I only remember two occasions where I was told they had no openings and I’d have to go to urgent care…and one of those two times, they called me back within a half hour to say “Come here.  We’ll squeeze you in.”  (Good thing – Wes had pneumonia!)  It has always been amazing to be seen by familiar faces.

Of course, we got to know everyone a little too well eventually, first with E.Coli 2012 and then with what happened last summer.  And quite possibly the best thing about Dr E’s office is his nursing staff.  I know that they have cried when we’ve cried along the way.  They have always been so genuine with their care and concern for the boys.

I don’t mean it lightly when I say that David and I stressed over this decision.  But once we made it, I knew we had to see them one last time.  I planned on taking the cowardly way out and was going to send a MyChart message ahead of time, giving the heads up.  I figured it would lessen my likelihood of tears.  But I didn’t send the message ahead of time, and I somehow managed to escape without any tears actually falling (not that they didn’t threaten a good portion of the time!).  This was also a good time for me to have a cold, since it hid the wavering voice more than once (I think).

Sad news aside, it was a good appointment.  Wesley is a rock star.  We hadn’t realized it, but the last time Wes was to the doctor was last March for an ear infection.  He’s been healthy otherwise!  Knock on wood, right?  Or maybe the stars just thought we were due for a break.  Wesley did get some immunizations Thursday, and his face could bring you to your knees with his tears.  He recovered nicely, too, although he was angry enough that he tried to refuse the sticker.

Dawson’s portion of the appointment went well, too.  We did the standard measurements, and they added a new one – wingspan/arm length.  It sounds like that’s more of a standard measurement for amputees?

We ended up going out for dinner afterwords.  David and I needed a margarita!  The boys were hilarious at dinner.  We went to a Mexican restaurant, and they insisted on a quesadilla and french fries.  Being silly, I wrote Wesley’s name in ketchup when I put some on his plate, and he ate all around it.  And then when he cleaned his plate except for his name, he insisted on picking up the plate to lick the ketchup. 



Wes had a rough Friday night; he was crying a lot and complaining that his left ear hurt.  His ears were just checked the day before, so I’m not sure if he was just having a reaction to the immunizations, but he was really hurting, so we offered him some ibuprofen.  We also offered him an option – a liquid ibuprofen, or the chance to try to take a pill like Dawson.  He chose pill, and he did AWESOME.  No issues taking it.  My kids rock.  The next morning he woke up happy and with no pain!

Dawson overall is doing great.  We’ve talked to him a little bit about what we learned at his procedure on Tuesday, but obviously there is a lot that we haven’t talked about yet.  He knows that there is something wrong with his bladder and that we are going to be trying a new medication soon to try to help him stay dry.  I don’t think he’s all that concerned about it, to be quite honest.  As if you needed more proof about the resiliency of kids.

The Damages

OR trips are always tricky.  We got the call for Dawson’s scheduled OR time Monday mid-day.  They base the OR schedule by age (youngest first), and Dawson has always generally been the first case in all of his procedures.  That luck ran dry with yesterday’s phone call.  Dawson’s OR visit was scheduled for today at 3pm.  UGH.  I was slightly comforted by the fact that he wasn’t the last case of the day, and even more comforted when she said that D’s doctor typically runs early, so there was a chance that D could be called in early.

That meant no food after midnight.  Clears before 11am.  And then nothing until after his OR trip.  Luckily, clears includes water, apple juice, jell-o, and popsicles.  (The funny thing about jell-o is that it couldn’t be store bought – I had to make it from a box.  Not a big deal by any means, but I’m used to making “adult” jell-o.  It was so much easier to pour the jell-o into 4 different cups rather than a bunch of mini containers!)

There was quite a bit of novelty when he (and by default, Wesley) got a popsicle for breakfast.  And by “a popsicle” I mean two.  I sent Wes to daycare with purple lips.  He looked adorable.


(Sorry for the demon eyes)

Meanwhile, Dawson and I spent the morning hanging out.  He only ate a little jell-o, but managed to take down another 2 popsicles while watching Tom and Jerry.  Kids LOVE that show!  At one point, Tom jumped out in front of Jerry, and it startled D so much that he jumped and hollered.  Hilarious.

Of course, as 11 o’clock neared, I kept warning Dawson and counting down the minutes.  “Do you want more jell-o?  Another popsicle?  Drink more water and juice!”  At 10:58am I gave him his noon meds and told him to drink up, because then he was done until after his procedure.  And at 11:17am, he burst into to tears.  “I’m sooo hungry!  Why can’t I eat?  I’m so hungry!”  It was sad and so, so maddening.

Luckily, we got all call around 11:40am, telling us that D’s doctor was running ahead of schedule (!!!), and asking us to come in as soon as we could get there.  That was the best news EVER.  And it stopped Dawson’s tantrum that he had been having for a full 20 minutes.

It amazed me when we got there – so quick and efficient.  Right back to our room.  Nurses in immediately.  And of course, we knew so many people.  Dawson’s nurse was formerly in the PICU and had him while he was in the Burn Unit a couple of times.  The anesthesiologist had worked with D during sedations in the past (she also made a crack about us being so late in the day and how that is unfamiliar territory for us.  I love/hate that they know us so well).  Familiar faces are ALWAYS good.  D settled in with his iPad and was as comfortable as always.


This guy rocks.

D’s doctor came in at 1:30 to go over the procedure.  I discovered that I somehow was WAY wrong about what they were looking at.  Instead of checking the ureter, they were checking the urethra.  I promise I know the difference between the two.  I don’t know where the disconnect came from, I swear.  But while the ureter suffers from reflux (urine being pulled back from the bladder to the kidneys), it was damage the the urethra they were concerned about.  Anyway, so he ran through everything they were going to check out, and then within minutes, we were headed to the OR.

Dawson is adorable.  So cute.  He did great in the OR.  I was with him until he went to sleep.  And I ended up leaving D in the OR at 2:02pm, a full HOUR before his initially scheduled time.  They told me the procedure would be quick – SO true.  By 2:30, Dawson’s doctor was back with updates.

The good:  there is nothing wrong with Dawson’s urethra.

The bad:  I’m not sure where to start.  Dawson has a lot more internal issues than we originally knew of.  His bladder is 1/3 to 1/2 the size it should be.  It is damaged, due to the purpura.  There was also something – a cyst? – that they removed to be biopsied.  They are pretty sure it was just due to having the suprapubic catheter for so long, but it’s procedure to biopsy something like that.  I hate the word biopsy.  We are going to start with meds in the next couple weeks to see if we can get his bladder stretched out some more and get more control, but overall, D’s doctor didn’t seem confident that was the long-term solution.  His bladder will likely need to be extended.  That has two options:  use part of his bowels to expand his bladder, or take part of his bladder, and grow it outside the body, to be implanted later.  The first comes with what sounds like awful risks – there is a high incidence of cancer after 5-10 years.  The second?  Can’t happen for another 3-5 years.  These might not be fixes, either.  Something he deals with the rest of his life.  And there are other issues on top of that – more personal issues.  Some that may not be able to be corrected, and some that can’t be corrected until he is a teenager.  A TEENAGER.  The hardest time in your life to deal with things like this.

It was very upsetting.  I just hoped that we were past this purpura damage.  I cried during that conversation (and on the drive home…and now as I finish typing this…).  And the doctor, bless his heart, got teary too.  I’m just SO done with this purpura having a lasting effect on Dawson.  So sick of all of the things that have been damaged because of it.  Hurting more than anything for Dawson, who already has a lifetime reminder of what happened to him when he was four.  And now it’s drawn out with internal issues that suck.  Sucky.  Suck.  I’m bitter.  It’s not fair that my baby is STILL dealing with this, and that he will be dealing with this for years, on top of what he already had to manage for a lifetime.

The good news is that we got home a lot earlier than expected.  We had planned to have Wes spend the night at Bob and Nikki’s, because David is out of town and because I expected that the surgery would start late (isn’t that the way it usually works?!), but we got home by 4:45pm.  And Dawson was in tears because he wanted his brother here.  So instead of spending the night with his cousin, Wesley came back home.  Luckily, the three of them (Dawson, Wes, and Parker) were content to watch Frozen together for a while in exchange for the sleepover that didn’t happen.

So – big D has a long, long road ahead of him it sounds like.  Or not?  Maybe the meds will do the job.  But it doesn’t sound expected.  It sounds like we need to be thinking about what is best for Dawson in the long-run.  We have a lot to consider.


Our little Wesley is four!  I can’t figure out where the time went. 




No cake this year.  Wesley decided on cupcakes instead.  Except by today, his actual birthday, he was all cup-caked out.  So we sang Happy Birthday while he ate some ice cream instead (and I missed photos of that).

Wes has had a bit of a birthday weekend.  Friday he brought cupcakes to daycare to celebrate.  And on Saturday we drove up to the Dells to play at Knuckleheads.  The boys had a blast.  So did Grandma Mary and Aunt Maria.  :)




We got to ride this train.  I was expecting a relatively tame little roller coaster.  It was a little more intense than expected.  Wesley was not impressed and has said he does NOT want to go on it again.


Dawson did the first part of the time there with his legs off, and the second part with his legs on.  When he first put them on and walked out, I was hyper-aware of people around us and their reactions.  By the time we left, I barely noticed.  He got a lot of looks, that’s for sure.  And we did get a couple of questions from one of the workers, but I’m ok with questions, because I’m proud to answer and tell them how far he’s come.  (One person asked “How long did it take him to learn how to walk?”  It was fun to reply “He just got those in January!”)


Aunt Maria did not get the Ninja Turtle Shirt Day memo.

This morning Wesley woke up FOUR and with a nasty cold.  :(  The cold was brewing yesterday, and his voice started getting raspy at Knuckleheads, but today it was pretty much in full-force.  Still, he put on a good face for photos.




See Wes coughing into his elbow?  So sick, such good manners.

Wesley was a little leery of his birthday present at first, but it turned out to be a hit.  So much so that Mario and Yoshi’s batteries are almost dead after only a day!  That track has been played with 85% of their waking hours.



We had planned on going out to dinner tonight (Wesley’s pick was “the place that gives licorice when you are done eating” – Quaker Steak and Lube, of all places), but Wes woke up from nap even more out of sorts, so we decided to stay home, and I ran and got Culver’s for dinner instead.

The boys watched Ice Age as they ate dinner.  I ended up sitting in front them taking pictures.  I love the looks on their faces as they laugh.




Happy Birthday to my Wesley.  Some of my favorite things about him from recent weeks:

Last week David took Dawson grocery shopping.  Wesley’s requests for food were “Clementines and lettuce for that sandwich that I like.”  (He wanted a turkey, cheese, and lettuce sandwich!)  Last Saturday he managed to eat 1lb of strawberries, 1 pear, half of a banana, and 2 clementines.  His grocery request for David today?  Pears.  That’s it.  He’s so easy to please.

My favorite thing that he says these days is “Actually.”  Exchanges usually go something like this “Wesley, do you want the raspberry go-gurt, or strawberry banana?”  And he’ll say “Raspberry!…Actually, I’ll have string cheese.”

He still has his moments of defiance (he is, after all, a growing and learning kiddo), but he’s also one of the most considerate kids I’ve ever seen, particularly when it comes to Dawson. He defers to Dawson and will help out D in just about any circumstance.  Dawson seems to realize this, too, especially today.  David and I have been referring to Wes as “Birthday Boy” most of the day, and D has picked up on it too.  On any other day, Dawson would have been incredibly upset to have Wes pick out the yellow plate for breakfast (unofficially Dawson’s), but Dawson immediately agreed to another plate, no complaints.  “Sure thing, Birthday Boy!”

I love these ages.  Learning things constantly.  Pushing boundaries.  And still cuddly.  Perfect age! 

Happy Birthday to my Wesley Wiggles!

Random Updates

I’ve been missing for awhile.  I have no idea where the time goes, but it’s flying by.  Some updates:

  • Dawson goes in to the OR on Tuesday.  It’s a 45 minute procedure where they will do a cystoscopy and a cystometrogram.  They will also check out the ureter at that time, and make any corrections/fixes to it, if possible.  If that happens, D may have to come home with a 24 hour catheter – UGH.  
  • Wesley turns 4 on Sunday.  FOUR.  Where did this little baby go?


  • Finally, and most importantly, I have a dear friend that could use some of the love and generosity you all have shown us.  When Dawson first went in to the hospital, Minta was one of the first people there, offering support (and food).  And as her summer got worse, she never mentioned a word to me that her family was dealing with some pretty heavy stuff, too.  Minta’s daughter Joella needs a surgery, and insurance just denied it – for the second time.  Please visit this link for Joella’s story, and if you are able to help out, please do so.  Joella the Brave!