What Cameron did over Christmas Break

ALOT! It's hard to sum it all up but here goes:
- Mom and Dad took Cameron to see Santa at Macy's, he of course smiled upon seeing him but really could have gone either way about sitting in his lap. Maybe it was because the child was running a fever and just started on antibiotics. I know we're terrible parents for taking him to see Santa when he had a fever and was sick but ...


- Yes, Cameron came down with the pre-requisite infection just before Christmas 103.5 fever and all, but a Dr trip ruled out any major issues (shunt or kidney) and he was diagnosed with sinusitis, some antibiotics and he was headed home. Luckily by the time Christmas Day rolled around he was in good condition.

- Christmas Eve Mass he did pretty well. We almost made it to communion, but after Dad and Mike (Cameron's god father) took turns walking Cameron around it was clear our time was up. We think Mike pinched Cameron to get out of church :)
They had a really cute kids play during mass, ask us about the Sheep that went running, it's a good story but not for the blog!

- Christmas Day Cameron enjoyed opening presents, he still doesn't really get the whole Santa thing but he is in love with the "1st Class Air Holiday Flight" Plane he got from his cousins Tess, Brooke and Lauren Finnerty.


- We then headed to Glenview for Christmas dinner with Grandpa George, Grandma Ellen and Uncle Ed and the Wood and Hanley families. It was a great evening, and I am pretty sure the kids may have outnumbered adults at the party, which was great.



- Cameron then got his very first haircut on the 26th, he liked it and looks like very polished with his new do!



It's been a busy time but very fun, we are looking forward to a Rockin' New Years Eve with Janet Davies and Mark Giangreco on TV!! Wooo Hoo!! Yes, we are very cool.

A big Congratulations to Scott and Tammy Carlson who welcomed Kyle Carlson to the world today!!

Wiggle, Wiggle, Wiggle...

As promised the video of Cameron Wiggling away!

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December happenings

I was quickly reminded how happy I am that we have been free of visits to Children's for a while after we spent 3 hours there on Dec 4th. I know that 3 hours does not sounds like a long time, and in reality it's not. Unless you are trying to keep an 18 month old occupied and prevent him from crawling all over the nasty hospital floor - this is one of the many reasons I'd love Cameron to be walking. The boy likes to move, and when we keep him from moving he's not happy. Dad and I took turns carting him around trying to distract him. Our noon Kidney US finally took place at 1:15pm - none of us were happy. Our 12:45 Dr appt started at 2:15pm. But looking on the bright side all is well, his kidney is growing and we are in good shape.

Next steps are another US in 6 months, and we'll repeat the CMG test in September to see how is bladder function is going. Really we don't need to do this test but the Dr and I discussed that the CMG was instrumental in confirming the tethered cord diagnosis and therefore I just want to be sure Cameron is doing ok in that arena.

Cameron is doing some very funny stuff these days, if you ask him to "wiggle" he will furiously shake his head back and forth, it's so cute. He learned this trick in his music class and also his favorite show "Jack's Big Music Show" features a song where they wiggle, wiggle, wiggle. With any luck we'll get it on video soon.

He loves to lay on Miller and give him kisses (aka bite him) Miller could not be a better sport about this but we quickly separate the two just to be safe. Remember the rocking horse from last Christmas, well Cameron can officially "rock" himself while sitting in it which is fun and provides a break for Mom because he's stationary. This seldom happens, we spend most of our days chasing Cameron from room to room. He understands the word "No" but certainly does not obey it :)

We are still working on sign language, so far he has mastered "more", "all done", and variations of some other words but nothing concrete. If he sees liquid of any sort he makes an "ahhhh" noise as if he's auditioning for a Sprite commercial or something. We take a drink, he takes a drink it doesn't matter he does it. Mom and Cameron have been battling a cold for the last week so he's become rather proficient with a tissue which is nice to see. We get the feeling he understands a lot, just doesn't have the words yet.

We've got three therapies tomorrow and I'm interested to see how Cameron does in developmental therapy, this will be the first time we've done it without a co-treat of another therapy. I think this will be good and allow Cameron to focus solely on the DT tasks.




Cameron checking out the Christmas Tree


Anytime Cameron gets near our bathroom he puts his fingers in his mouth as if brushing his teeth, here we were introducing him to the sink by using a step stool.





We want to say congrats to two new Mom's out there!!
Anna and Mike had Henry Donald Dudick on Sunday at 10:05am
&
Jenn and Drew had Graham Otto Price today (Tuesday) at 9:08am
We are so happy to have two more healthy baby boys to spoil!!!

xoxo

50 Days

That's how long it's been since we were at Children's! or any Dr. for that matter - it feels great!!!
Some might consider the 6 weekly therapies medical related appointments, which they are, but I consider them more a part of our routine now.

I can't tell you what a nice break it's been to not be schlepping ourselves into a Dr's office and then waiting hour after hour. When I look back at the Calendar this time last year in Nov and Dec alone we had over 10 appointments with various doctors and it was the dreaded time where we started to learn more that eventually led us to the tethered cord business 6 months later. What a difference a year makes!

Reflecting back is good sometimes as it makes us appreciate how far Cameron has come and quite frankly how far we have come! Yes, there are still challenges ahead but during the holidays we are going to be focused on being thankful for the good health that Cameron has and his growth in so many ways.

We will find ourselves back at Children's next Tuesday (Dad's birthday!) for a Kidney Ultrasound and to see Dr. Yerkes. I expect all is good, we just have to keep an eye on his kidney to make sure things are still operating well.

I guess it's a good thing we've had a break from Cameron Dr. appointments because Mom has been logging some serious time at various Dr's offices. I am fine, well that's a relative term really given the circumstances, because we are PREGNANT again!

Some of you are probably as shocked as we are, actually I doubt it. It's been a long 16 weeks and I am sure it doesn't take a rocket scientist to figure out that we didn't plan this but I learned about 3 years ago that god laughs at those who make a plan. I am pretty sure he has not stopped laughing at us for a long time!

We are blaming a child free trip to Dublin and Guiness for this :) Naturally an Irish name is in order so please send any and all ideas - seriously!

We have held off in sharing this news for many reasons, we have talked with several geneticists, had many Dr. appointments and 4 ultrasounds already. So far, so good!
Positive outlook is key for all of us as you can imagine it's been and will continue to be a pretty emotional time for us, Mom especially since her hormones are already out of whack.

Yes, we are nervous, scared, freaked out about it all, but we are also very happy. Every ultrasound will continue to be an emotional roller coaster there is no doubt.

Mom is just over 16 weeks along, after a level 2 US yesterday showed no major problems at this point we felt it was ok to share the news. It's hard to see much but it was a bit of relief. Risk recurrence is somewhere between 2-5%, seems pretty low right? It's middle of the road actually. We will continue to closely monitor the baby's progress and mom's progress. After talking with a specialist yesterday it sounds like we aren't going to truly be able to breathe a sigh of relief until close to 32 weeks. We'll make it...

Dad learned yesterday how to give Mom a Progesterone shot - SCARY! -- not the shot, Dad administering it is! Mom will receive this once a week till delivery, it is supposed to help prevent pre-term labor.

So Happy Thanksgiving and Happy Holidays to all...we'll keep the blog updated with Cameron and his soon to be big brother status. One of the Dr's asked us if we told Cameron yet - I laughed out loud. Yeah, we told him and he said that's the last time you two are ever leaving me alone again!

Oh and here are all the standard question answers (if we missed one just let us know)

Due Date - May 11, 2008 (yes that's 11 days before Cameron turns two!)
Sex - they know but we aren't sure we want to know yet, or at all we'll see. We are somewhat inclined to do everything differently this time
Are we moving to the suburbs? Yes, in our "free" time we have been talking to and meeting with various school districts about their special education programs, turns out CPS isn't going to cut it for Cameron. Not sure where we are going but close to the city for obvious reasons (dad's work and Children's).
When are we moving - ASAP, let's hope before May 11, 2008!

Love to all
Mom, Dad, Cameron and Baby #2
Here is Cameron after we told him

Taking our time ...

So it's been kind of a blah week, I won't go so far as to say rough because really we know "rough" and this just doesn't qualify in my eyes.

Basically we're going to increase the intensity and frequency of some of Cameron's therapies. I applaud our therapy team for being so on top of things and wanting to get Cameron to be the best he can be. We will now be combining PT and Cranio Sacral Therapy into a co-treatment twice a month and then continue with standard PT and CST + Developmental Therapy individually on the other weeks. We are also increasing Speech Therapy to every week - which I am really happy about because Cameron needs this.

I guess the blahs for me lie in the whole question of walking for Cameron - I know it's going to be later than your average boy and I am fine with this, I asked if walking by his 2nd birthday would be a lofty goal and I realized after saying it that asking this is not fair of me. So I rephrased the question to "Will Cameron walk?" and the therapist said yes. I just need to take the timeline off of all of us and I think he'll do it in his own time just like he does everything. As she said it took Cameron a while to crawl, and now he is an expert crawler doing it in great form.

Time, we just need to take our time, I will repeat this on those blah days :)

So the therapy schedule is now even more jam packed if that was possible but it's all for the right reasons. Here are some fun photos of the last few weeks at home.

Chicken Run!!!!

We took a trip to Indianapolis two weeks ago for Mom's friend Jenn's baby shower and spent some time with the McKeown Family, they have two adorable little girls Allison and Anna. Now, we all know no trip to the cornfields of America is not complete without a visit with some local livestock. We went to a local Creamery and saw all the Chicken, Calfs and Cows up close and personal. Enjoy the photos below...








Cameron has been doing well, despite a cold that set him back a bit but nothing major. He was quite a bear during all therapies last week, but all of the therapists agreed they'd let it slide given his usual charming demeanor. We're in the midst of a battle to figure out a new nap schedule as it appears we are ready to drop to one nap per day (boo hoo for mom!!!!) So I am trying to navigate this change without messing up to many of our therapy schedules.

Other than that not much is new to report we are enjoying the Dr. free month for sure!

Happy Halloween

Hope everyone had a fun night! Here are some photos from the trick or treating event on Southport Sunday (it was a zoo!!!) Cameron ended up with only one piece of candy b/c it was so crowded...Amy, Mike and Ditka joined in on the fun, they brought the leiderhosen all the way from Germany for Cameron!!!
Last night we carved our little pumpkin in lieu of trick or treating.

Halloween Fun

It's great to have a full report on nothing but FUN! we have no medical updates and therapy is status quo.

A few weeks ago we went to the pumpkin patch with Jeff, Emily and Charlie Savage. It was a ton of fun, the boys got to ride a pony (Charlie and Cameron) we had to pry Jeff and Matt away from the ponies!

We found some great pumpkins and Cameron and Charlie loved playing in the "patch".
Today we are headed off to the Southport Halloween Kids Event, since it's hard to trick or treat in the city where we are this will be our Halloween. Cameron is going dressed as a little German Boy - with authentic lederhosen from Germany that his god parents Amy and Mike brought back from Oktoberfest!

We'll be sure to post some photos....
Happy Halloween!!!

Marathon Mayhem

What an amazing day - you could use that word to describe so many aspects of the day! Matt and Chris both made it and finished which is a HUGE accomplishment given the conditions. Take a look at the hottest day in marathon history:

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Relaxing before the marathon...

We finished up all but one of our Children's appointments for this round last week. Naturally a long day but we received good news all around!

Cameron's Hydrocephalus is under control and we are keeping the valve on the shunt at 2.0. As Dr. Bowman said he has an "ideal" amount of fluid in his ventricles right now for someone with Hydro. His Muscle Test showed improvements as well - all signs pointing to a successful surgery and progress in therapies. The best news of all is that we do not need to return to Nuerosurgery for 6 months - this is HUGE! We won't be back till March which is amazing and a major milestone for Cameron. Even better we won't need to repeat CT Scans until Cameron shows/tells us something might be wrong physically - this is even better news to me as it means no more sedations for a while.

Orthopaedics was also pleased and did not feel repeat X Rays were needed to check on the curvature of the spine - we will continue to monitor over the future, but no imminent cause for concern.

Cameron also received his orthotics and we are working on breaking them in, he tolerates them very well. It's amazing the base of support they provide for him. We capped off the week with a visit to the pediatrician, this was the first time I felt like we didn't have a thousand things to discuss and ponder which felt great.

Cameron is now 21.6 lbs and 31.5" tall. We have officially made it into the 5-10% percentile for weight. They couldn't get over how fast his length is growing.

We are prepping for the big Race on Sunday - Dad and Cogan are going to need some extra support given the record highs they are predicting! We'll be sure to post photos after he crosses the finish line. Thank you again to everyone for your very generous donations we are at just about $8,0000 which is wonderful and we are so pleased to be able to support the Hydrocephalus Association thanks to all of you.

We're Cruisin' ...

We've been working hard in PT to get Cameron to move his feet and we have success! He's starting to make his way across the coffee table. Incentives need to be high stakes - aka, anything electronic - remote, monitor, phone.

Take a look at the video to see him in action...

Two SOUR days...

I am keeping this brief as the last two days have been HELL, I am sorry but it's the truth. We have been at Children's from 9am - 2pm Tues and Wed, and there is not one second of exaggeration in that stmt. I have had it with waiting hours to see these Dr's it's ridiculous. Each day involved torturing Cameron which makes it so hard.
Tues - Kidney US - looks the same, still some fluid but no increase which is good.
CMG - Cameron made it through the torture, even slept a tiny bit during the procedure but once that bladder got full he let us know. Anyhow the really good news is that his bladder function has gotten better, it's not perfect but we'll take better any day!!! He is having some issues with his bowels so we are starting some meds for that. But all in all this made me feel very good about the surgery.
Today we had a 9:30 with the genetics Dr and we saw him at 11:15!!!! Then followed up with a trip to the lab which was jam packed. When they finally called us in for the blood draw we sit down on the chair and there is BLOOD on the arm rest thing UGH!!! Can I just say that I can't wait for the new Children's to open downtown - oh wait that will be in 4 years I guess I better hold my breath.
Anyway it's been two horrible days for Cameron, but sprinkled with good news on the bladder and we'll move on...till next Tuesday.

California Dreamin'

Cameron loved California! He was such a great traveler, we had a wonderful trip to Hermosa Beach to celebrate Josh and Debbie's wedding (congrats!!) and then we headed south to Laguna Niguel for three days of fun in the sun. Below is a video montage of the highlights of our trip. We belatedly celebrated Nana's 60th Birthday on the trip!

We are now gearing up for 4 weeks of Dr. appointments. This Tuesday will be a renal US followed by the dreaded CMG test with the catheter. The good news is we get to see Dr. Yerkes, the urologist after both tests so that we will have the results right away. Thus, no waiting game which is nice. The ideal outcome is the bladder function has improved, we'll see.
Next week Cameron will have a CT Scan, hopefully without sedation - I think he can do it without but we'll see. We're also meeting with orthotics to get him measured for something called SMO's this should help with his ankle support and such to hopefully improve his strength when standing, and eventually walking.
We wrap it all up the first week in October with a muscle test, orthopedic surgeon and Dr. Bowman, our neurosurgeon, to review the CT and discuss the overall post operative report now that we are 3 months post surgery. Oh and a hearing test just to be sure we're good there....
We'll be sure to update post Dr reports. It's less than one month from the Chicago Marathon, Dad is in the heat of training and we are all very appreciative of all the support we have received for the Hydrocephalus Association - and they are very pleased with our fundraising efforts.

I'd love to get a group together to cheer Matt on that Sunday - let me know if you're interested in heading out with Cameron and I!

We hope everyone had a safe and happy labor day.
XO

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Making strides...

I am so proud of our little guy - today for the very first time I finally got him to use sign language for MORE, we've been working on this for months. And to top it off when I asked him again after his second helping of chicken nuggets and strawberries he actually shook his head NO! I can't be sure he knew what he was communicating but I am so happy. Cameron has only communicated MORE with Dad a few times and never with me.

His hair is really coming in and I'm still not sure what color it is - somedays it's a tint of red and others blonde and them some he's got mom's dirty blonde going on.

Cameron had a wonderful time with Nana while we were in Ireland, when we came home he kept reaching back for her while I held him, it was really cute. Nana did suffer a few small bite wounds from our resident vampire though. We are so grateful to Nana for coming to give Mom and Dad a break. We had a wonderful trip and feel so lucky to have gotten away.

While we were gone Cameron made a visit to Children's for the Radiothon, he is a local celebrity with over 8800 hits to the webcam where his "story" was featured. To check it out here is a link of what was played if you went to the Mix site to watch the radiothon online. A big thanks to Matt's Company for being such great supporters of the Radiothon. Check out the link, it's so great what the radio station put together:


http://live1.bonnevillechicago.com/BICOnDemand/WTMX/Video/COTG_PreRoll.wmv

Our Boy is Gaining Weight!

It's been a busy week so far...lots of therapies, we really like our new PT (but miss Stephanie of course:)

We saw Dr Vicari regarding the head shape and torticollis, he is pleased with the progress Cameron is making with therapy so we will wait another 4-6 months to see him again.

The Pediatrician today was happy with Cameron's weight gain, he is up to 20lbs which is great. A whole two pounds since June! He is now officially on the growth chart for his age group - 5% to be exact!yahoo.

Cameron is doing well getting into four point when crawling, it's not all the time but he's making some major progress. He also seems to getting the hang of "Hi Five" and he loves to eat. Oh and he loves to comb his own hair, it's so cute!!!
He smiles everywhere we go it's amazing to me. Even after two shots today he cried for less than 5 minutes and was back to his happy ways.
Cameron is infatuated with Miller's dog crate, he even has climbed in there twice. Somehow we also seem to miss the photo op.

This weekend is the Children's Memorial and Mix 36 Hour Radiothon. Last year Cameron was having his shunt surgery during this so we spent a lot of time hearing all of the amazing and heartbreaking stories. Cameron is going to be featured on the website I believe, they put together this wonderful montage of him and told a bit of his story - they wanted us to come down to do an interview but Mom and Dad are going to be in Ireland!! Yes that's right we are leaving out little angel and heading overseas. Matt earned this trip for doing so well at work lately. We couldn't pass up a free trip to Dublin all expenses paid. Cameron will be spending some QT with Nana and Grandma Randi and many other visitors.

If you have the time this weekend take a moment to visit the website http://www.wtmx.com to see where Cameron is posted, you can also pledge on line or call in direct to1-888-831-7733. We will be checking in often from Dublin and calling in to make a pledge.
I consider us one of the luckier families at Children's as we have had the joy of coming home and despite the many surgeries Cameron comes out even better. There are many children at the hospital far more regularly than us, and some who have never left. As you are enjoying this weekend with your family and friends take a moment to think about those children. We appreciate your continued support for our family, the hydrocephalus association and Children's Memorial who has played an integral role in Cameron's care from day one.

xoxox
mom and dad

Therapy Reports are in...

We had the annual IFSP meeting with all of our therapists and service coordinator last week. There were no real surprises - in summary Cameron has 50%+ delay in his stationary motion (bascially sitting up and the like) this is all related to the hip/leg tightness we are still struggling with. Locomotion is better at 33% delay. Language/Speech is the other weakness, more so in expressive language at 50% and Receptive around 20%.
There's a whole bunch of other numbers, in some cases he's doing age appropriate thing and in others not - overall is probably at the equivalent of a 8-9 month old
Fine motor he's doing really well - hooray!

All these numbers aside everyone agreed he's the happiest baby they have ever worked with!

I am not worried about any of this really because we're just going to keep working hard. Yes, it's hard to hear that your 14 months old is like an 8 month old but i'm over it.

We are going to add in another therapy - developmental therapy. So that brings us to a grand total of 5 therapies. We also revisited talk of seeing Dr. Vicari again about Cameron's head shape. It's slowly improving, but if we decided to go the route of the helmet that would eliminate a therapy for us. It's tough call b/c we would love one less therapy but the helmet costs anywhere from $2,000 to $3,000. We see Dr. Vicari next week so we'll see what he thinks.

This past Monday we got to test Cameron all over again at the Children's NICU follow up clinic. I told them we just went through all of this so they weren't all over us, but somehow it still took 3 hours. We did get to see Dr. Matoba who we love, she was with us from before Cameron's birth so that was nice that she was in clinic that day. The PT was pretty concerned about all of his leg tightness, when I asked what should we do she suggested we discuss in depth with orthopedics. So the only thing left to do for the NICU group is get a hearing test. I suggested that we need not come back since I clearly am on top of the therapy bit. They agreed we just need to call in 6 months with an update. YEAH....no more half day NICU visits!!!

Sorry for all the medical stuff - but that's been kind of the story around here lately. In other news Cameron loves lemons - yes, RAW lemons. He has also taken to avacado and banana after many months o protest we are so excited!

Thanks to all for your continued support and donations to the Marathon to benefit Hydrocephalus. We really appreciate it.

Chicago Marathon for Hydrocephalus

We've changed the blog template - again - I get bored easily I guess!
But I also wanted to draw attention to Matt's plan to run the Chicago Marathon in honor of the Hydrocephalus association. There is a link that will take you directly to the active giving site. Matt has been training for many months to prepare for his first marathon, after many half marathons! His friend Chris from IU who lives in New Jersey will be coming in to run the marathon with him and contributing to the Hydrocephalus Assoc. You can learn more about this Association on the link to the right.

Every year we're going to try to pick an event and a cause to support that affects Cameron. Last year was Children's Memorial. My dream is to one day start a foundation in Cameron's name - I am sure this will happen one day.

As always thank you to everyone for your generous donations in Cameron's name, it means so much to us and is benefiting a wonderful cause. Through our help the Hydrocephalus Association can continue to do it's work and help families like ours with research, education and advocacy.

It's been a while...

I know and people are asking for photos so here you go! We are doing well and enjoying the nice weather. Cameron has gone to the park for the first time with the help of our PT showing me how to work with him while there. He really loves the swings. Hope everyone is enjoying summer. XOXO

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A day in the life of mom

Well after spending over an hour on the phone today with Children's to schedule Cameron's many appointments for September I am ready to scream. How this can be so difficult is beyond me, especially since it's one person coordinating it all!

I had this feeling of relief when we left Dr. Bowman's office last month, as they said we'll set it all up and call you tomorrow with the full plan of all the appointments you don't need to do a thing - yeah!!

Wouldn't you know weeks passed and I heard nothing, till I got a random call from Radiology last week to set up the Head Cat Scan - ummm, Ok but I need to set up my Dr. appts first to be sure the CT is done prior to Dr. appt. This prompted me to call the Spina Bifida clinic last week and get things going. There was lots of back and forth. I get it, it's hard to coordinate 3 Dr. appointments and 4 tests - I never thought it could all happen on one day, and frankly I don't want to do it one day.

So we are now going to be taking care of all these tests and appts over 3 different days - no big deal, but the fact that it took an hour to accomplish this is insane. At one point she said to me, well the Dr. will want him to be somewhat alert for the appointment so we'll need to leave enough time between the sedation from the CT Scan and the appt to make sure he's alert. Here's an idea, let's schedule the CT scan on a different day?????? Oh and while we're at it, probably not a good idea to try and do a muscle test on the day of the CT Scan. She responded, yeah you're probably right let's move that one too.

Oh it goes on and on and on... in the midst of all this we are working on trying to get Cameron's annual IFSP scheduled, this is where all the therapists do an assessment test on Cameron and then we discuss it together, add in that we need to get a new PT b/c ours is moving to the burbs- ugh! And then of course Miller the dog starts having a seizure - poor guy!

My list is never ending and I can't even remember what I was thinking two seconds ago sometimes.

It's a good thing I am only working part time as this is a Full Time job and then some.
Despite all of this I realize we are lucky that Cameron is doing as well as he is, I have no idea how the parents of chronically ill children do it. I try to remember when my day is annoying like this one, someone else is having a far worse day.

Thanks for listening! xoxo mom
PS Coming soon fun pictures of our trip to South Haven, Michigan - it's on my to do list :)

Happy 4th!

I just realized I had not posted since we saw Dr. Bowman, she thought the wound was looking very good. I have to agree it's amazing how quickly and nicely it is healing. She asked if we noticed any changes as she did not see a change in his legs. But she reminded us that the idea of the surgery is to prevent further damage and it would be nice to see some increase in motion in his legs and release of the tightness. It doesn't appear as though that is the case, which is disheartening, but there is no loss of motion from pre surgery so we must be thankful for that.

Cameron resumed his therapies this week - we got them all in, amazing. PT, CrainoSacral, OT and even ST. He's doing really well with his eating. OT and PT agreed his legs and hips don't seem to show any signs of change, but there's also no loss of motion so that is a positive sign. As a result of being on his back for so long his scapula is popping out again so we are going to start taping again and few other things. The good news is all of the therapists were pleased with his recovery.

As you can see below he is starting to pull up onto things, he uses all of his upper body strength, we're working on getting the legs involved. He is army crawling all over the place and we get an occasional true crawl, all with time I am sure.



Doesn't the table look tasty!

I have to admit it was nice for awhile to not have therapy and all the surgery stuff looming over our heads. I actually felt like your typical family for once, it was nice while it lasted. We're back to our full therapy schedule and today I was on the phone with Children's for quite a while trying to get all the follow up appointments set for early September - Dr. Bowman (neuorsurgeon), Dr Yerkes (Urology), Dr Dias (Orthopedics), a head CT, CMG (bladder test), Muscle test and Renal Ultrasound. How's that for a slap back into reality! There was talk of doing this all in one day so that all the results are in and can be reviewed at our actual Dr appts. Should be rather interesting, we are still working on times.

In other news we celebrated Nana's 60th birthday. Nana taught Cameron all about Wimbeldon while she was here. They watched it everyday and I think he's ready to hit the courts!
We enjoyed July 4th out in Lake Forest with our friends the Savages and Aunt Anna (aka annie the nanny) made it out with her family and it was so nice to catch up and meet Michael, Sam and Chloe.

Cameron REALLY wanted to go to the Taste of Chicago, but we told him NO!! So instead Dad gave him this Turkey Leg at home and told him it was just as good as the one from the TASTE- as you can see he seems to be thoroughly enjoying it!

We are off to celebrate Grandma Randi's 60th Birthday tomorrow - Happy Birthday Grandma Randi!!!

XOXO
mom and dad

Bed Rest is almost over...

Ok so I've done this bed rest thing before, and I'll be honest I hated it the first time. Now that Cameron has been on bed rest for over a week, which essentially means I am too between the hours of 7am -7pm, well, we are both over the whole thing!!!

The good news is Cameron is doing really well. Today we made a quick trip to the hospital to have the nurse check his wound, as it was looking rather swollen and after two phones calls to the resident on call over the weekend we needed to ease our mind that everything was ok. It is.
Yes, it's a bit swollen but they are not too concerned right now. We see Dr. Bowman on Thursday for our post-op check.

I wanted to share all the fun stuff Cameron has been doing lately:
- He can now eat solid foods and a whole bunch of them! We are so happy with his progress. Strawberries, chicken, crackers, corn - he's pretty much into everything. He still needs to pack on the pounds he is 18lbs and still under the 5th percentile but we are not worried. We will continue to load him up with food. And he has now graduated from formula to whole milk - well he really likes 1/2 and 1/2, it's a step in the right direction.

- He loves music and in particular seems to be a big Maroon 5 fan, specifically the new song "Makes Me Wonder" I think it's called. It's hilarious he starts clapping and smiling when he hears it.

- Cameron can now wave, and not just the "one finger wave" some of you have seen. He's a five finger waver and it's adorable.

- He's still combat crawling, I'll be anxious to see how this changes once he's free to roam about later this week.

It's nice to report on his many accomplishments instead of just the medical stuff!! Oh and July is shaping up to be a DR. free month - Yahoo!!!

Thanks again for everyone's gifts, meals, love and support.
xoxo
mom and dad

Cameron is HOME!

Just wanted to send a quick note that Cameron is home, much earlier than expected. We were discharged last night. When Dr. Bowman came by and asked if we wanted to go home we packed up so fast it was clear what the answer was!
Since Cameron seems to be in very little pain she felt comfortable sending us home two days early. It's been quite a challenge today keeping him flat on his back - in fact it's nearly impossible. You really can't do anything else but be with Cameron so making meals, preparing bottles and such is quite the challenge.
We've rigged up his stroller to act as the hospital wagon and that seems to help a bit.
Only one more day of only laying on the back and then we are to move to "bed rest".
Which is a joke for a toddler. But we'll do our best. We are just so happy to be home. Exhausted, but overjoyed with how well this went.
Here is a photo of us at the beach before the surgery.

xo

Post Surgery Report - photos added !!!!!

Thank you to everyone for your well wishes and prayers.

We arrvied at CMH at 9:30am and Cameron went in for surgery at 1pm with his favorite stuffed doggie, just two hours after the scheduled time. This is nothing compared to the last time we had surgery so we were relieved. He charmed all the nurses and doctors - no surprise.

Surgery went smoothly, it took several attempts to get an IV in so he has many pokes and two IVs. His heart rate dropped below a comforting level so he got another shot of some medicines and didn't have any problems. They snipped his "tongue tie" first and then did the removal of the fatty filum. The Dr. said he has a rather narrow canal which is typical of children with hyrdrocephalus. The likelihood of retethering is rather small.

We saw Cameron in recovery around 4pm, I started getting that sick filling in my stomach as we approached recovery as I hate seeing our little guy this way. But he looked pretty good, a little puffy and was peacefully sleeping.

And then the drama began - the stuffed dog was missing!!!! Cameron loves this dog, it's got all his favorite smells and is the perfect size for him. So we panicked, everyone from the nuersurgeon to the anethisologist was looking for this dog - they pride themselves here at Children's on never losing the beloved animals. Laundry was called back up, 5 people are sorting through it all and there is NO DOG!

Just when we had succumbed to defeat, Dr. Bowman, our nuerosurgeon, arrives doggie in hand! She promptly dropped him into a plastic bag for us to take home and wash prior to letting Cameron cuddle with it. Apparently "doggie" took a trip to the ICU, he was intabated and all :) at least that's what they told us. He's doing just fine, thank you. I guess he mistakenly got placed on another bed where there were many animals and someone just assumed he belonged there.

THE DOG "QUARANTINED"

So back to Cameron, we made it up to the nuerosurgey constant care ward around 5 or so and Cameron was doing pretty well he threw up twice which was not fun. By 7 he still had not gone pee so they had to cathertize him, Dr. Bowman said this is pretty normal. He then was drenched in water underneath his whole body I freaked out and thought he was leaking spinal fluid - luckily just sweat. Which is so not like him.

It was a long night without much sleep we had to cath him every 4 hours and he just couldn't get comfortable. By 7am he peed on his own so hopefully no more caths. The hardest part of this whole thing is going to be keeping him on his back for the next 4 days, he just wants to get up - it's a real struggle.

We'll keep everyone updated on the progress, I need to go get some sleep now that dad has arrived here.

REUNITED WITH DOGGIE AND SMILING AS WE WHEEL HIM AROUND IN THE WAGON TO KEEP HIM ON HIS BACK...FUN FUN!
xoxo

A weekend of firsts...

It's been a great weekend! Cameron took his first few bites of real solid food - some wheat bread and a few bits of spinach! yeah!!!

He went to his first Cubs Game on Friday -we started at Murphy's to be sure he got the full experience!! The Cubs lost, so it was the perfect introduction to the team. He did sleep through a few innings and then enjoyed two tastes of his Dad's malt cup.




Saturday he attended his first German Fest (aka May Fest) in Lincoln Square. This place was crawling with babies and parents downing steins of beer it was great!


We are packing in all the fun we can before June 15th!!!!!