April 25, 2008

We're home!

Just a quick post to say that we're home agian. Yay!

Ben wants to type now...

k,xzk,lxclkxlxcdl j yh6dftdtuy5u85g8y9yiyui yu y nn nb mmmmmmmmmmmmmmmmmmmmm jku o , g,. l,kgkglblbvvnuvuuuuuuuuuuuucyvu96 ,v9867976iioyy tov9 8 8f8 8m ,f8m ,8

April 24, 2008

More RMH fun

Well, first things first...we're staying another night at the Ronald McDonald House. I'm exhausted. Last night was far from a good night's sleep and now we've missed the non-rush-hour window of opportunity to get the heck outta here without dealing with bumper-to-bumper traffic. So, we're gonna relax here tonight and leave in the morning.

When he's not playing with the shopping cart, Ben is very amused by the dump truck. Look at that tough guy in his Harley shirt (thanks "Uncle Phil")...

Oh...wait a minute...what's that in the dump truck? Oh my, yes, it's a baby doll. He loves that baby doll. I think he loves it so much because he can jam his finger into her mouth as many times as he wants without her turning her head away after the 100th time like I do.

One issue at this place is the beds. They've got these Sleep Number beds and they're on a pretty high base - high enough for Ben to crawl under. The problem is he gets stuck every time! Get goes under just fine but can't seem to figure out how to put his head down low enough to get back out. I've had to rescue him about 10 times now.

Posted by Picasa


Ben has discovered shoes. He knows they go on the feet. But how!?

April 23, 2008

RMH Fun - Stairs

Another big hit at the Ronald McDonald House is the huge flight of stairs by the reception desk at the front entry. Ben makes a beeline for it every time. He goes up really well and is starting to learn to come back down the safe way - feet first instead of head!

RMH Fun - Shopping

Ben has several things he likes about the Ronald McDonald House here at Comer. The shopping cart might be at the top of that list...

April 22, 2008

Dobson Street Afternoon

Ben had physical therapy yesterday and that went really well. The office is very close to his granparents' home so we often stop by there before or after. This week we decided to just spend the night because we're heading down to Comer Children's Hospital on Wednesday for an early morning appointment on Thursday. Saves us some driving.

Ben got to spend the afternoon toddling...sniff, sniff...yes, toddling around the street - Dobson Street in Evanston - where his dad grew up. There were all sorts of kids running around and boy did Ben have a good time.

He even got to eat dinner outside with his grandparents.

What a tiring day!

Today we head back to the Ronald McDonald House at Comer Children's Hospital. This is all in an effort to avoid rush hour traffic which can easily turn it into a 5-hour trip.

April 21, 2008

Checking in

Just checking in to let everyone know that Ben is still doing awesome. A week past surgery and it's like he's better than new...well, I guess in his circumstance he's better than new plus a half-dozen surgeries! Hee hee.

We had a fabulous weekend. We went to the Brookfield Zoo yesterday and had a blast. Talk about stroller-land. Sheesh. I've never seen so many strollers in all my life. Lovely day. Gosh it's nice being able to open the windows. We're getting really excited to play with Ben in the back yard this summer. We're thinking about turning the former vegetable garden area into a play area instead.

We head back to Comer Children's Hospital this Thursday for a post-op visit. The nurse practitioner will remove the bandages and we'll get to really see what it looks like then. And that's about it! When we find the camera cable we'll post more pictures.

April 19, 2008

Home at last

We pulled into the driveway a few minutes ago and are all tucked back into home. Ben is sleeping in his crib, the cats are happy to see us, and us parents are getting unpacked. We stopped to have dinner with family and boy was that nice. I was remarking how incredible it is that Ben is doing so well just 4 days after spinal surgery.

His cousin, Aaron, said, "You should blog about that, Aunt Becca."

So true and here it is, Aaron. Just four days after surgery Ben was tearing around their living room like nobody's business. He was into everything, interested in every toy, chasing the little train around and proudly pushing around the shopping cart - finally a real push-toy and not the stroller! If it weren't for the bandage on his back, the bruises from the IVs, and the tape residue everywhere (oh yeah, and the slight funk from not having a bath since last Sunday!), you would never in a million years know what all he's been through.

Our little hero.

April 18, 2008


Yep, those are the boys standing OUTSIDE the hospital!

Good grief. Tell ya what...isolation is sure isolating! Aunt Barbara came down to spend the afternoon with us (in the required yellow gown and blue gloves) which was soooo nice because we were getting nutso in that room. Basically we were waiting around for Ben to poop so they could take another sample or two for testing. The kid had outrageous diarrhea for two days so it seemed like that should take no time at all. Well, of course as soon as someone uttered the words "wait for another sample" that was when his diarrhea ended. It worked just like "you can get discharged when he pees." Grumble grumble.

But he's out now so that's what matters. It's incredible to think this could actually be our last hospital stay. Unfathomable really.

Now for the really cool thing. When we got back to the Ronald McDonald House, Ben was playing with an apple (yeah, it's kind of a weird "toy" we know). Suddenly, he was just standing there with it...both hands on the apple. Standing! No support! For 10 seconds at least!!! Not even wobbly!

Not bad for 4 days past neurosurgery. Not bad at all.

Here's hoping for a much-needed, good night's sleep IN A BED. And tomorrow we head home.

Deep breath....and sighhhhhhhhhhhhh.
Posted by Picasa

Making due

Ben is SO bored. Well...okay...his mama is a little bored, too. We're having to make due with what we've got. I tried to score him a walker from the toy room, but they banished me when they found out about the isolation. Boo hoo!

Ben is making due with the stroller as a walker for now. Check it out! Four days after having one of his vertebra removed and his spinal cord cut open!

Some answers to your questions

Q: What is c.diff?

A: It's an overpopulation of a certain type of bacteria in the colon. This type of bacteria causes diarrhea. It can become overpopulated if you take antibiotics (like Ben did during surgery) and it can be contagious. Strangely enough, it's treated through antibiotics as well.

Q: If he's in isolation does that mean he has c.diff?

A: No. It just means they think he might have c.diff. It's just a precaution to protect the other patients and health care folks.

Q: Did you feel that earthquake???

A: Nope!

Q: So, where do you sleep?

A: Most of the rooms have a large couch that folds down into a bed. Our ICU room had one of these. Unfortunately, we somehow got a room on the general floor that doesn't have a couch. Instead, there was one of those roll-away beds you might find in a hotel or your grandma's attic. I tried it out for one night and HOLY COW that was uncomfortable. I swear the springs must be 50-years-old because I nearly sank in to the floor. I wised up the next night and moved the mattress to the floor and have been sleeping here --

Sleeping in the hospital is weird. At any moment...well, usually at least every hour...someone is in the room to do something - take vitals, administer medications, check the incision, take away a food tray. Heck, they even came around to empty trash at 9:45pm last night. I really have to wonder whose bright idea it was to do that. I mean, it took for-freaking-ever to get him to go to bed last night and I totally understand waking him up for stuff like medications, but heaven help the person who wakes him up because the trash just HAS to get removed NOW. Grrrr.

I will say this is the first hospital stay during which I have been able to get somewhat decent sleep. Maybe I'm finally just used to it - the monitors and doors and whatever. A nurse has had to wake me up twice for something and even the neurosurgeon had to one morning. It was pretty funny. In the past I would wake up whenever someone came in the room even if I had on an eye mask and earplugs. Go figure.
Posted by Picasa

Balloon fun

Some random photos for Ben's dad to look at while he's at work.

Some very active members of the FOB Club (Fans of Ben...heehee) sent these balloons and a toy for Ben. He's not sure which is more fun - the balloons or the ribbons attached to them.

Thank you, Barts family!
Posted by Picasa


Well, as if things couldn't get more cuckoobananas around here, Ben is now living under "contact isolation." This basically means he can't leave his room any more to go play in the play area or take walks and everyone who comes in the room to touch him has to wear a gown and gloves.

He doesn't care as long as he can keep playing with his pulse-ox thingymajig.

Here's the view of Ben from the nurse station.

And here is lovely new sign on his door.

Posted by Picasa

April 17, 2008

In the nick of time

Just in the nick of time, Ben finally urinated. I swear it was at 8:15pm or something crazy like that. It's 9:30pm now and Ben is happy and IV-free. We're staying the night to keep closely monitoring his "output" as they say. They are also testing him for C.diff. Ick.

We lost the horizon

Remember when discharge was on the horizon? Well, guess who hasn't urinated since the foley came out at 11:00am. Yeah. That's not good.

So, we're still at the hospital.

Last we heard, they are going to try to start another IV around 8:30pm.

Discharge on the horizon!

Dr. Frim and his NP came in a little while ago and said Ben could be discharged today as long as he urinates okay without the catheter. The nurse removed the catheter just a few moments ago, so cross your fingers!

We'll have a post-op follow-up appointment next Thursday with the NPs (Dr. Frim will be gone that week).

Woo hooooooo!

Now I have to go get his prescriptions filled and get some more coffee. Mike is on his way down here from work. It's hard to believe this might actually be our last hospital discharge ever - knock on wood and all that.

Yay! Yipee! Yay! Yay! Yay!

Good morning

Despite the ickyness last night, Ben is having a good morning. He was his usual playful, snuggle self playing with toys and giving kisses. Just like at home. Ahhh...if it were just 8:30a.m. instead of 5:30a.m.

His favorite "toy" this morning has been a diaper. Yes, it's perfectly clean. Sheesh!

Neurosurgery did rounds this morning and Ben put on the charm. They're talking about weaning him off of the valium over the next couple of days.
Posted by Picasa

April 16, 2008

IV drama

Ben's remaining IV failed tonight and is causing some drama. The neurosurgeon is pretty adamant about keeping Ben on IV fluids especially because of his urinary catheter. As soon as Ben's nurse told us this we told her that it would probably take a phlebotomist to get one started. She said they don't have any that work at night.


Two nurses tried to get another line started and both failed. Ben was inconsolable. A third nurse came in for another try and walked right back out when she saw how upset he was. We asked his nurse to ask the doctor again. He has been eating like a champ after all. They finally relented and agreed to keep him off the IV. However, this is only if his eating and urine output remains the same. If either decreases, then it's IV time again. Honestly, an IV isn't such a big deal except that it seems nearly impossible to get one started on this little guy now...he probably doesn't have any good spots left.

The other consideration is that the IV fluids are helping to keep his urinary catheter flushed out. The last thing we want is a problem with that catheter. Also, he's supposed to have another blood draw done at some point for some more genetic testing. So, he's getting poked again regardless.

Ugggggghhhhhh. Long night again. It just stinks how things can be going so well and a stupid little thing like an IV can cause such drama.

Ben is back and off his back!

Ben is back to his old, smiley self and it's so great to see! He's smiling and laughing and just being his normal self. Mike and I always have to remind each other that these surgeries just change his body, not his personality. Still, it's always such a relief when he gets back to his old self.

Ben officially came off of "back rest" today at noon. He slept right through the big moment so we didn't get to see him try out his legs until about 2:00 p.m. I think. (I'm not sure because I've hit that point of the hospital stay when you go into a time warp.)

He got up on all fours and was pretty shaky and tremble-y at first, but he got the hang of it soon enough and is having a blast.

It felt sooooo great to finally pick him up. I don't think I quite realised how much I missed holding him until I got to hold him after 3 days. Oh what a feeling.

We are supposed to keep an eye on his back to check for any lumps or swelling. If that happens it could mean there is spinal fluid leaking and he'll have to go to his back again for a while.

I finally got permission to unhook his urinary catheter from the bag and just have it empty into his diaper. That's one less tube to keep track of when he's moving around and it's quite a relief.

It's just so great to see him moving and playing like his old self. Looks like his legs are working good. Hurrah! I'm itching to get him on the ground to see him crawl around or even pull up and cruise.


A few answers to your questions

Q: Have they checked the syrinx to see if its shrank any?

A: No, there's not really an easy way to check it. Also, I don't think it would shrink this quickly but I could be wrong about that.

Q: Or is this something that goes down over time?

A: Yes, I believe they think it might shrink over time or at least not grow any bigger now that there isn't tension on the cord.

Q: When will they check it? What kind of test/scan do they do to check that?

A: Ben will have an MRI of his spine in 3 months to see how things are healing in there and we should get a good idea of what's going on with this syrinx then, too.

Q: So, you're all done with surgeries, right?

A: Uhmmm...please don't jinx it! There are no more surgeries scheduled. We won't be surprised if there is some sort of orthopedic surgery in Ben's future to deal with the curves in his spine. We also won't be shocked if he needs some sort of bladder surgery at some point, too.

Q: What is on his arms?

A: Once he was under anesthesia they put IVs in both of his arms...well, wrists actually. In order to preserve the line they tape boards to his arms to keep his wrists strait. You may have also seen arm restraints in some of the pictures. The narcotics make him really itchy and he was pawing his face like a maniac for a while. They have these things that wrap around the whole arm and keep his elbow strait so he can't bend it and get to his face. He has since pulled out one of his IVs and he's not as itchy any more so he just has the one IV left and no more restraints.

Long night good morning

Last night was a long night, but then again all nights at the hospital are pretty long. The nurse woke me up at around 2:30am to tell me that it seemed Ben had stopped urinating for some reason. She paged a doctor and in the meantime we fiddled with his catheter. I fed him 4oz of Pedialyte and within a few minutes several blood clots came out in his drainage tube and then a bucketload (almost literally) of urine. So, maybe these clots were blocking stuff up or something. A couple of doctors checked him out and things looked fine, so all is well there. I was up with him until about 4:00am. Loooooooong night!

The big payoff this morning is that he is more alert than ever and getting back to his charming self. He's showed off some of his tricks for the nurse this morning - so big, waving, high 5s, dancing, funny tongue faces, and THE HULK. We have got to get THE HULK on video one of these days and show y'all who haven't gotten to see it in person. It's just too funny.

And here are some pictures this morning...

Posted by Picasa

April 15, 2008

New room

Oh yeah, and we're in a new room now on the regular floor! We left the ICU at around 6:00 p.m. and carted everything up to the regular peds floor. They have a special area just for neurosurgery patients, so that's nice. We really like the nurse we have tonight, too. She actually came in to ask - yes ask! - if we would be okay with her doing Ben's vitals when she comes in to give the next dose of meds instead of waking him up with it now. Yes! Yes yes!

You would not believe how many health professionals do not seem to know the rule - NEVER, never, never, ever wake a sleeping baby.

Mike is headed back to McHenry tonight and very reluctant to leave his boy. Poor guy. I can't really imagine going to work right now...heck, I can't even seem to even decide what to eat. I'll make a point of posting lots of pictures for Ben's dad to check out the next few days.

That's right...hold on to your hats people...LOTS of photos coming soon!

A bit of play

Ben has been waking up more and more and making it more and more difficult to keep him lying down. At noon tomorrow (Wednesday) he's supposed to be able to start sitting up and such. At this point, we're pretty much giving him the pain meds just to keep him down and out. He sat up for a bit and seemed pretty woosy from it.

He's been eating like a champ with no problems. We're still giving it to him slow and he's still getting mega IV fluids.

Ish ish delish! What a doll.

It's been nice to see him play a little. He's given us some half-smiles, but we'll be really happy when we get his big smiles back again. He sort of sleepily plays with the toys and with us.

Here is his best attempt at peekaboo, or should we say peekablehhhhh...

Holding it down

Ben is doing pretty good today. He's had several ounces of Pedialyte and a couple of ounces of breast milk and he has been holding it all down. Yipee! We're taking it easy with him and not letting him drink too much all at once. If there's one way to make your hospital stay longer (and more unpleasant) it's barfing. They are really pumping the fluids into him by IV, so he's very well-hydrated.

His blood work from last night turned out just fine and his urine very nearly blood-free. Done and done!

Sadly, Ben is pretty uncomfortable today. We've seen him worse, but it's still hard to see him in pain. They're slowly scaling back the morphine and moving him to Tylenol, ibuprofen, and Valium. The narcotics are making his face rather itchy and they've been giving him Benadryl for that. His eyes are awfully puffy and red - probably a combination of the narcotics and a reaction to the tape they would have used during surgery to keep his eyes closed. So, when he's awake he's fusses and paws at his face. Both of his arms are taped to boards to protect his IV lines. They have the added benefit of stopping him from scratching his face up.

Luckily he's been sleeping a good bit and hasn't made any huge efforts to move around. Dr. Frim told us to expect him to be pretty uncomfortable today with back spasms and such. The idea is to keep his head level or lower than his back so that he doesn't start leaking cerebral spinal fluid and get a headache. So, it turns out his favorite sleeping position - on his tummy with his tush up in the air - is fine! Woo hoo!

Mike and his mom spent the night at the hospital with Ben last night and gave the mama a good night's sleep at the Ronald McDonald house. Mike has to leave today so he can be back at work on Wednesday. It's going to be hard for him to be away from Ben, but hopefully we can get enough pictures up on here to help him through it.

They've told us that the order has been put in to transfer Ben from the ICU step-down to the regular nursing floor. Yay! Now we're just waiting for a bed. We're pretty anxious for that because the ICU room doesn't have a bathroom. Ewwww. Other than that, this place has been great.

So that's the news so far today. Thanks again, everyone, for all the well-wishes.
The bloodwork last night came back okay...yay!

This mobile text message is brought to you by AT&T

April 14, 2008

Waking up

Surgery went well by the way. No complications there or anything. Very good. They sent him to the step-down ICU/CICU because the nurse-to-patient ratio is lower so he gets more care there.

He started waking up pretty good once he got to the ICU step-down. He was pretty groggy, though. His face was a tad puffy from the face-down position they put him in to do the surgery.

They've been giving him morphine for pain and that sets him up pretty good. He's awfully fussy when he gets awake enough to show it. We're talking heart rate in the 190s fussy. We've never seen his heart rate that high before. It was a little startling.

He threw up the the first feeding of pedialyte we gave him. It was sort of funny...well, about as close as you get to funny in our world. It was grape pedialyte, so there was basically this pool of purple ick. The nurse stepped out to go get another sheet for the bed. Apparently she recently got engaged because she was gone for FOREVER when we realised she was right outside our door talking with everyone about her ring. Grrrr. There was our little guy with his head lying in a pool of purple vomit and she was out in the hallway telling her coworkers about how she almost got a tear-shaped diamond, but didn't. Have we ever mentioned how patient, forgiving, tolerant, and nice we are?

Hmmmm....what else?

Oh yeah. Not so good is the news that Dr. Frim now says Ben actually DOES have a syrinx in his spinal cord. It's in the lower part of the cord and hopefully this surgery will cause it to shrink or at least not get any bigger. We're still trying to figure out why he said he didn't have one before but now says he does. Probably has something to do with him being on his cell phone driving home in his car the last time we talked and mostly likely not looking at Ben's reports at that time. Well, now we know (or at least we think we do).

Another concern is there seems to be a not-so-insignificant amount of blood coming out in his urine. He has a catheter in place and his urine is being collected in a bag. It's awfully bloody. They will be doing a blood test around 2:00 a.m. to check if this bleeding is having an impact. So, let's hope for the best there.

It seems like someone is in there just about every hour to check his incision site and test his reflexes. Basically, we want to see that his legs and stuff are going to move like they did before and that there isn't some sort of nerve damage from the surgery.

What we're hoping for now...
...a good night's sleep.
...less blood, more urine.
...no pain.
...no nerve damage.
...shrinking syrinx.
...no more vomit.
...more eating.
...more lower-extremity reflexes.

Thanks thank you thanks thanks thanks everyone for all of your phone calls, emails, comments, text messages, prayers, support and all that. It helps big time.
Posted by Picasa

From PACU to ICU

Here he is on his way from the PACU to the ICU.

It was nice that they could transport him in the crib. At Cincinnati they always had him recover in PACU on an adult-sized bed. They would wheel the whole bed (sometimes with his mom on it, too) up to the nursing floor and transfer him to a crib. When you've got a little guy with so many tubes and wires coming out of everywhere...well...it's nice not to go moving him from bed to bed.
Posted by Picasa

PACU Recovery

Here is our little guy when he was recovering in the PACU.

They told us he had woken up before we got there and apparently he was pretty agitated. Despite all of their efforts to keep him on his back, he flipped himself over, tucked his knees under, and fell asleep with his tushy up in the air. The nurses thought that was the cutest thing...it was about the first thing they pointed out to us when we got back there. We kinda laughed and told them that's how he always sleeps. Hee hee.
Instead of the general nursing floor, he has been sent to ICU stepdown.

This mobile text message is brought to you by AT&T

We are with him in the PACU. His incision is small and his face is puffy. Sleeping.

This mobile text message is brought to you by AT&T

Closing up already!

We were just told that they're closing him up already! Woah! That was fast!

Now we are waiting to be called back to PACU to see him.
Took this one just before we handed him off at the OR. He seemed pretty tired, but wasn't fussing too bad so that was good.

Posted by Picasa

Pre-op entertainment



Phew. Pre-op sure is exhausting.

He basically crashed after several hours of our best efforts at entertainment. One of the neursurgery residents came in and started tickling him and junk when he was asleep. I finally blurted out, "Are you trying to wake him up or something???" He jumped back. So goofy.
Posted by Picasa

Hospital bracelets are big fun

Posted by Picasa

Not eating is no fun

This hospital has wireless internet...woo hoo! So here are some pictures from this morning.

It took a while for Ben to get over the fact that when he woke up he wasn't immediately fed. Turns out he would prefer to eat. Go figure.

Posted by Picasa

Urologist done

The urologist, Dr. Gundeti, just came out to update us. His part is done and everything is fine. He did a cystoscopy to place the urinary catheter. He said there is still an abnormal "pocket" in Ben's urethra, but it's healing nicely. This pocket makes it difficult to place a catheter because the end of the catheter might go into this pocket instead of the bladder and could do some damage. So, Dr. Gundeti used this camera (cystoscope) to view the inside of Ben's urethra and thread a small wire through to guide the catheter in.

So, Ben's anesthesia went well and the cystoscopy and catheter went well. Woo hoo! Two down!

The neurosurgeon, Dr. Frim, said that his part of the surgery should take about 1.5-hours and we should expect to wait about 4-hours because it can take a while to get all the prep stuff done. We went into the OR around 1:30 p.m. so we expect to see him around 5:30 p.m. at the earliest.
They finally took him to surgery a few minutes ago.

This mobile text message is brought to you by AT&T

We're still waiting for them to take him. He's taking a nap now.

This mobile text message is brought to you by AT&T

April 11, 2008

Slight time change

Looks like Ben's surgery won't be first case after all. Bugger! He's now set for 10:00 a.m. instead of 6:30 a.m. We can't complain much about the possibility of sleeping in a little later, although it's hard to imagine we'll be getting much sleep with hungry little Ben.

Nothing much else to report. We sort of felt at home in Cincinnati - we had our favorite PACU nurse, knew the circulating nurse, knew the surgical fellow, knew where to buy the really fresh swedish fish - you know, the important stuff! So it's kind of sad to have to start all over at a new hospital.

BUT...It's way less hectic to prepare for this one since we aren't driving out of state to get there this time. And we've got a mole working for us on the inside...heehee. Our cats' mother's owner, who used to live down the hall from us, (did you get all that??) recently graduated from UofC with her MD/PhD and she's been diligently answering all of our questions. Some of our questions have been seriously silly, too. She has even been paging - yes paging! - her various resident friends to find out stuff for us....stuff like about breast pumps and junk. What a friend! Yay mole!

So, Monday at 10:00 a.m. it is. If you want a refresher about this surgery just click here to read over the old post about it. If you have any questions, just ask. As usual we'll put brief updates here during the surgery.

April 09, 2008

Perfect heart

I have been thinking a lot about Benjamin's situation lately. Philosophizing more like. It's impossible, of course, to answer the questions. But I'm trying just the same and I think I'm getting closer to an answer.

I remember the day after he was born. My friends came to pick me up from the hospital where he was delivered and drive me to the hospital where he had been taken for intensive care. I'm sure I was every bit the mess you're imagining. The last time I had seen our son, the neonatologist warned us that he could have any or all of a number of birth defects - trachea, esophagus, kidney, heart, spinal cord, brain, limbs - he would need several tests to rule these out. During that drive I got a phone call from Mike telling me the results from Benjamin's echo cardiogram -

"His heart is perfect."

Perfect. Perfect. Perfect. I exploded in tears and I am still wondering how my friend, who surely assumed the worst, was able to keep the car on the road.

Perfect. His heart is perfect.

It's so true. His body may not be perfect...yeah, okay, his body isn't perfect for sure. But inside his imperfect body is a perfect heart...a perfect soul...a perfect being.

Benjamin was born with several birth defects. I've lost count...okay, anyone who knows me knows that's obviously a lie...I know exactly how many and what they all are, but I won't bore you with the details. The point is, Ben has several defects to his body but doesn't have a defect in his heart. His heart is perfect. His body might fail him, but his heart - his soul - will always be perfect. Eventually even the perfect bodies become defective. Benjamin's life is unusual in that his body started out defective. But it's his defective body that helps us recognize his perfect heart. If it weren't for all of the defects we may never have known how to appreciate his perfect heart.

On Tuesdays Ben and I drive along that same road on our way to physical therapy. I remember exactly where we were when I heard it and I remember every time I drive past that spot -

"His heart is perfect."

It still brings me to tears.

April 08, 2008

The bad thing about vacation

The bad thing about vacation is that it leaves you more vulnerable to the realities of life. That vacation was so, so needed. It really was the most we've relaxed, for the longest period of time, since Ben was born. For those few days of vacation we got to be the family we dreamed...you know, the family we imagined way back before Ben was born. Just a family at the beach. Normal.

Being normal for those few days makes our abnormal life all the more painful.

We got home to a pile, yes an actual pile, of letters from our insurance provider. We don't get into the insurance stuff here too much, but we've often thought how interesting it would be for one of us to keep a medical blog like this while the other keeps a blog just about the insurance. You would definitely see where the REAL drama of our lives is. Just to give you an idea - at one point Ben's medical claims were being denied because of a pre-existing condition. Yeah for real. It's a battle every step of the way. We keep reminding ourselves that no matter what happens with our insurance coverage, we will still get Ben what he needs.

We're back again to that mental state where anything and everything that doesn't have to do with Benjamin is just unbearable. We devote so much energy to our baby, especially in the wake of a surgery, that spending precious energy on anything else is annoying at best. It's so difficult to concentrate and focus.

Yep, vacation is officially over.

Back home again

We got back home late last night....brrrrrrr!!! Mike is back in his suit and off to work. Ben and his mama are getting ready to head out for physical therapy. Under our suits and coats and warm clothes we're tan and peeling (Mike), freckled and sunburned (becca), covered in prickly heat (Ben and becca), and missing the beach (all of us).

This mama needs some serious coffee...NOW. This baby needs a serious nap...NOW.

Hey, be honest now, does our house always smell this weird?

We miss vacation!

April 06, 2008

A day at Miami Beach

Ben woke up at about 2:30am last night and would not go back to sleep no way no how. Ugggggggggg! It stormed like the dickens this morning, too, so we really didn't get much sleep. But, we spent all day on the beach today so boo hoo hoo, right? Hee hee.

It's very, very crowded and busy. That makes for some really great people-watching, though. Ben had fun waving and smiling at everyone. He especially liked the big, red lifeguard trucks. His dada took him for a walk along the water and that put him into a deep sleep.

He was so asleep that we were able to get him into his stroller without waking him up. That's a first! We got this nifty sun shade for the stroller and have been putting it to good use here.

We rented a little grass hut on the beach with two lounge chairs under it. Very nice and shady. The hotel has beachside food and drink service and that was pretty yum. Ben has stayed sunburn free, but has had some pretty outrageous prickly heat on his back and shoulders. Doesn't seem to bother him much, though.

We plan on spending a good part of tomorrow at the beach again if the weather will cooperate. Our flight home leaves in the late afternoon. It's hard to believe that this time next week we'll be headed to the hospital for yet another surgery. Well that's next week and this is now and we've got some more sandy beach to explore, some more palm trees to sit under, and some more water splash even if it is for just one more day.