A Christmas Story...

We packed up the car on Friday morning at 4:45am and arrived in Detroit at 11am. We were quite a sight to see Mom, Cameron and Miller all lined up in the back seat. All passengers were very pleasant!

Cameron took a seat on Santa’s lap Friday night at a family party, which was great fun! Unfortunately this is where our Christmas fun would end…

Saturday night Cameron started repeatedly projectile vomiting around 9pm. My first thought was he is sick with the flu, but given that projectile vomiting is symptom of a shunt malfunction we never can be too sure. So, after 3 bouts of this and a very lethargic baby (another symptom of shunt malfunction) we put a call into the Neurosurgeon on call at Children’s. They suggested we bring him in, I explained we were in Detroit but I felt most comfortable calling our hospital first so we agreed to take him to Children’s in Detroit.

Off we headed at 11pm to Detroit Children’s – this was not somewhere I ever intended to visit on our trip! The whole experience was obviously very stressful. We didn’t know the lay of the land, the nurses etc. A CT Scan, X rays and blood work were all ordered. I had copies of all Cameron’s images from past scans and ultrasounds on CD. The Dr’s were very happy to hear this so they would have a base line to compare the new scans to.
Cameron survived all the tests with the exception of the attempt to place an IV – they were naturally worried about dehydration as he was still throwing up at the hospital. 4 needles, a second team of nurses and a screaming baby later they gave up. Thank god! It was hell watching them try to get a needle in him. Around 3:30am they finally came back with the good news that Cameron had a case of acute gastroentitis (stomach flu). We were very relieved it was not a shunt malfunction.

We headed home with pedialyte – Merry Christmas Eve! Cameron actually was quite resilient and although we did not make it to Mass, we did make it to Christmas Eve dinner for a short stay.

And you knew this was coming around 2:30am on Christmas morning Mom woke up feeling ill and so the vomiting began for me! I apparently am not as resilient as it lasted till 1pm on Christmas Day. So once I stopped the throwing up we decided to pack it up and head back to Chicago.

As you can imagine this is not the trip we had so desperately needed. After such a long week before the holiday we just wanted to get away and pretend things were normal. I remember sitting in the ER at Children’s and I looked at Matt and said “Can you believe this is happening?” he replied “Yes, of course this is happening.”

Yes I know we are blessed in many ways, and the fact that we did get to see some family and friends over the holiday means a lot to us. But we needed much more, we needed a break from hospitals and Dr’s and constant worry.

Here’s hoping the New Year brings better health for our family!
XOXO

Off My Rocker...

It's been such a long day and poor Cameron has been miserable all day. I don't know if it's the teething or the reflux but he's not a happy camper. Didn't sleep much after 3:30am last night and lots of tears since.

He somehow mustered up the energy to be good for his morning therapy though which is good, but the afternoon OT session was not productive.

In between the two therapies we headed to the pediatrician, where again we've got some potential issues...Now I swear to everyone this is going to be my last post before the holidays! Because I can't take this anymore, I am beat emotionally and physically!

So here is the scoop from the pediatrician - weight gain is not where they would like it to be. He's at 15lbs 10oz which is not up much from last month. Right now we're going to blame the reflux. We'll see how is next month.
Head Circumference - appears to not be growing, remember when we didn't want it to increase, well no growth is not good either. For now we are going to blame it on poor measurement from last month. We are at 43.9cm, which according to the pediatrican is the same as Nov. But we did look back at his records from Dr Alden in November and they had 43.6cm....SO I have a feeling it's just poor measurement last month on the pediatrician end of things. Cross your fingers.

And that brings me to the leg length issue ...which I thought we had resolved on Monday. Pediatrician is still concerned. She shared the report from the XRays and based on the report it's questionable if they even x-rayed the hips. I recall when they took us back for xrays the tech said "so we're looking at the spine for scoliosis" I said NO, we're looking at the hips and spine for potential dysplasia or other issues.
So it says right on top of the X Ray report "Scoli spine entire ap/lat please include hips IF POSSIBLE" - if possible??? hello that was the point of this!!!!

So I asked our pediatrician to please contact the Orthopedic Surgeon who we saw and discuss with him her concerns and what the story is on the X Ray.
Right now there is a 4cm difference of leg length. We discussed this at length and I don't have the energy to get into it all - and quite honestly there is no point right now until I get a more firm answer from the two Dr's.

I cannot wait to get out of town and just pretend we are leading a normal life!! Hopefully Cameron will have a better day tomorrow, I am off to bed. One last photo to make everyone smile (and the inspriation for the title of this post!) - Check out this great rocking horse Cameron got from is Grandpa Conway and Gramma Ellen!!! he LOVES it! We had a wonderful visit with them on Tuesday afternoon, Cameron loves his Grandpa's glasses....

XO

Dandy Walker Report

I finally feel like I can truly explain what Dandy Walker means for Cameron. While there are still some unknowns that only time will tell, our appointment today was very helpful, hopeful and concerning – all at the same time.

Cameron definitely has the Dandy Walker Variant vs. Malformation. In his particular case he has a very small cerebellum and small vermis. All along we had thought the “variant” label was the better of the two to be faced with. Turns out, history would indicate that those children with the Malformation tend to fare better than those with the Variant. Bad news.

Given Cameron’s many anomalies/birth defects it is hard to say what this means for his development and the Dr wonders if there might be a syndrome out there that would tell us the cause of all this…ultimately that is not that important to me, but interesting nonetheless. They were most intrigued with the diaphragm problem as that is not very common, while the kidney and heart defects tend to be more common in children with DW. I’d venture to say that if we were just dealing with the Hydrocephalus and Dandy Walker, Cameron’s developmental prognosis might be different (a little more optimistic.)

But it’s not all bad news! Cameron is doing well in the social skills area (smiling—really ???  making eye contact and vocal) which is the best predictor for positive cognitive development. Which is good!

The area of concern is his motor skills. The Dr. mentioned that Ataxia, coordination and spasticity could all be issues Cameron will face. The Ataxia typically shows up around one year of age – and it’s described as being wobbly, trouble with coordination and I would imagine might mean walking could be difficult for him. But to be honest I need to do some more research on the Ataxia area…

Given that the MRI he reviewed was taken at 34 weeks, the brain was, and still is very immature. They recommended around 1 year of age (corrected) we have an MRI done to evaluate his brain further. Till then we should continue working with the therapists. In addition they would like some more information relative to the diaphragm and are planning to share this with a geneticist in San Fran who is working specifically on cases that involve the diaphragm. We are also going to participate in the Brain Malformation Research Study.

So it was a mixed bag of news today. There was a brief moment when the Dr was going into detail about his many concerns for severe developmental issues with Cameron that I got VERY scared, but I am trying to be optimistic based on his report on the social and cognitive correlation. He also suggested we start seeing a neurologist at Children’s that will be able to more closely monitor the developmental issues. Seizures are also possible so it would be good to have a neurologist on board now rather than later should that develop.

So there is still a waiting game, but I feel better knowing a lot more than what I did when I woke up this morning.

My brain is so overloaded with information I am anxious for the holiday weekend to begin and just forget about all of this for awhile! This has been a record week for us-- back to back days of hospital visits and we’re going to cap it off with two therapies and a trip to the pediatrician tomorrow for a check up and another dose of Synagis!
Despite some setbacks we have much to be thankful for!!
A Special thank you to those of you that have emailed and called us with your extra prayers, positive thoughts and words of enocouragment during this tyring week. It helps so much to know that people are pulling for our family and makes all of this a little easier to swallow when the days seem dark.

One last note, I ask you to remember those who are less fortunate than many of us. There are many children I see all too often at all our hospital visits that are not well, it's heartbreaking. Say an extra prayer for them.


Wishing everyone a safe, happy and healthy holiday season.
XO

GREAT News!

Cameron does not have hip dysplasia, or any issues with his hips, legs or spine. They did X Rays and all checks out good! It's a posture issue that we need to work on with the PT more. If in one year he is still having PT issues we're to check back in...We were there for 3 hours but I don't care!! It was so GOOD to have this news!!!!

On another note I got a call today from Univ of Chicago that there was a cancellation with Dr Dobyns (the Dandy Walker expert) they asked could we be there at 8am tomorrow. I said of course, as we originally could not get in until April 17, 2007.

I am now working on a long list of questions for the Dr. I am hoping that I can finally get some clear cut information about Cameron's Dandy Walker Diagnosis - maybe we'll get some more good news tomorrow!!!! that would be the best Christmas present EVER!

Thanks for the prayers and notes from many of you - they are working!
xoxo

Not another...

Remember when you were a kid and the word “Special” meant something good? You know “it’s your special day”. I have come to loathe the word special. I am tired of hearing “you need to see another specialist” –I don’t want Cameron to need anymore specialists!
But he does…Monday we are going to see an Orthopedic Surgeon at Children’s.

I had recently noticed some more severe assymetery in his body that I mentioned two weeks ago to our PT and we discussed the possible idea of seeing the Physiatrist at RIC. Then last week when we saw a PT at Children’s during our appointment for the STAR Scanner she pointed out some more potential issues.
Cameron has some rather noticeable assymetery with the creases on his back, and his left hip is abducted. The PT was going to send her report to our pediatrician for discussion at our next appointment on 12/20.
We ended up at the pediatrician this past Thursday evening, as I noticed a rather large swollen looking area on the back of Cameron’s head near the shunt tubing, so I freaked out. Turns out it was nothing, in fact it’s his muscle and it just appears more prominent b/c of the assymetery in Cameron’s head. But while we were there I mentioned the bit about the creases and hip. After a quick review they agreed and also pointed out that one of his legs is shorter than the other. And then came the words... “You’re going to see another specialist” I nearly crumbled inside.
For many reasons, but in large part because I worry what this means in terms of walking. I am trying to not get ahead of myself and we’ll know more tomorrow.

I guess you could say I am starting to hit that wall, it’s been over 6 months since Cameron was born and the intial shock of the many anomalies is starting to wear off. Now we’ve got to accept them and deal with all those emotions from the past that quite honestly I have shelved for the last 6 months, as I just try to survive and get Cameron to all his appointments and work on his therapies and manage all the insurance billing.

I am guessing some people are surprised by the tone of this post, I am just being honest about how this all feels. It hurts my heart more than I can ever explain and wears me down.
We will continue to do the very best for Cameron as he is a remarkable little guy. His happiness and smile makes every single step worth it. But that doesn’t mean we don’t have our bad days, our sad days and our mad days…

Here’s hoping tomorrow brings some better news.
XO

STAR Scanner Results ...

Cameron has been such a good patient these last two days! He survived the “STAR Scanner”, and let’s be honest it was nothing compared to what he’s seen before. They put him in this funny little hat that made him look like a thug (the nurses’ words not mine!) It was over in literally 30 seconds and we had the r
esults 10 min later. Good thing since we waited almost two hours to even see the Doctor. The results of the scan show that Cameron does have some asymmetry in his head shape. Long story (lots of medical jargon that I don’t have the time or patience to explain) short…he is border line for needing a helmet to treat the Plagiocephaly and Torticollis. They want to give him 6-8 weeks to see if we can correct the issues with therapy in hopes of avoiding the helmet. I was very happy to hear this – we have a GOAL! And I am going to work very hard to make this happen!!
We go back Jan 29th for another scan. In the meantime we’ll be working hard with his therapists. We had our first Cranio Sacral Therapy on Wednesday, it went well and was interesting to watch. At times it looked like the therapist was not really doing much, but a lot of this is muscle based and pressure points so it’s hard to really tell what’s going on. I am in the midst of quite a dilemma in light of this goal relative to Cameron’s therapists. I want to make sure we have the very best team working with him, I had been considering a change in our team prior to this, but now that we are working against a deadline so to speak I am more inclined to make a switch – which is weighing heavily on my mind. I won’t get into all of the specifics as I’m sure by the time I finished you all might think I was nuts!
I’ll just ask that everyone says an extra prayer that I find the right answer to the therapy conundrum and that Cameron makes some serious progress in the next few weeks.

4 therapists in 5 days...

Last week officially holds the therapy record! We saw 4 different therapists - OT, PT, ST and the special PT for Cranio Sacral therapy.
The Cranio Sacral Therapist (CST) did an assessment and Cameron is falling in the 3-4 month old range for many areas and in the 1 month old range for Stationary movement. They consider him 4 mos adjusted right now and he's almost 7mos corrected. He has low muscle tone in his trunk and high muscle tone in his arms. We're still working hard on the rolling over bit, but he's making progress.

With so many different therapists it gets rather difficult at times to keep it all straight. I have a "therapy" notebook to track our work from each session. One therapist will see him touch his toes and bring his knees up, and the next day someone else notes he is not doing this - I am the only one who sees everything so I have to do my best to try and keep everyone "connected".
We are going to add CST officially to the plan, so Cameron will get PT, OT & CST once a week and Speech will continue once a month. There was some talk of getting Cameron in to see a physiatrist at the Rehabilitation Instititue of Chicago. As some of you know I used to do advertising and marketing work for RIC, so it's hard to believe I might actually be using there services. It's an amazing institution, I recall every day I walked in there for a meeting I walked out with a new appreciation for my physical abilities.

Despite the many visits this week, Cameron is doing ok, I am anxious to get the developmental therapist in to do a 6mo evaluation to see where we stand in terms of big picture.

In other news Cameron is officially teething! After one day of pure agony, tears for about 7 hours he seems to be adjusting. I have not seen any actual teeth sprouting? But there is enough drool to fill a small bath tub. He gums at just about anything he can, poor guy.

We are headed off to Glenview tomorrow for the "STAR Scanner" visit....we'll see what that brings.
xoxo

Happy Thanksgiving

We hope everyone had a wonderful thanksgiving holiday with family and friends. We have much to be thankful for this year! Cameron is a true miracle in our eyes - he has hit the 6month mark and it's hard to believe how far we all have come. Thank you to all of our family and friends for your prayers and support we are very blessed to have such a good support system.

Cameron has been busy over the last few weeks - we kicked off the holiday weekend with marathon day of Dr appts on the 23rd. Occupational Therapy in the morning, and then we headed off to the pediatrician for another round of Synagis, the flu shot and 2 other vaccines - so 4 shots later and Cameron was not happy with us! We also are now treating Cameron for reflux - as much as I have been trying to avoid this diagnosis over the last few months reality has sunk in when all of his therapists mentioned he really was starting to show more signs of it. So we got a prescription of Zantac 3x day - which Cameron HATES!! I even tried to get him the grape flavoring and it wasn't happening. So we are now using another one called Axid that has a bubblegum flavor and he tolerates this one at least.
After the peeds visit we headed over to Children's for the head ultrasound and neurosurgeon appt. Cameron's fontanel has closed up almost completely so it was very hard to get any decent images - and Cameron did not enjoy this at all!!
But they were able to get a few usable images - we then went upstairs to see Dr. Alden -good news is the head ultrasound looks fine, no major changes and his head circumference is growing on an even plane. So we will see Dr. Alden again in February - another milestone we are now able to go three months between appts! The only unfortunate part is that Cameron will now have to undergo a CT Scan before his Nuero appts so that we can get better images and often the CT requires sedation so that will add another element of anxiety for mom and dad. I guess the good thing is Cameron won't be nearly as agitated during the exams.
We also discussed the plagiocephaly (flat head) and torticolis (shortening of neck muscles) with Dr. Alden and he is sending us to see a specialist in this area to determine if Cameron will need a helmet and other methods beyond the PT to help in these areas. In two weeks we'll see this new specialist and put Cameron in the "STARScanner" sounds cool huh? Well I'm not entirely sure what it's all about but I believe it's technology that can measure the crainal spaces and help the orthotists determine what Cameron needs -likely a helmet. Good thing Winter is coming :) Maybe we'll have them put a big IU on the helmet to support the hoosiers during basketball season?
While I'm not excited about adding another specialist to our growing list, it's all for the right reasons as I was getting very concerned about the lack of progress we were making with the head and neck situation.
Cameron is doing well with both OT and PT getting them each once a week and we are now going to also add in another PT that will focus on something called Crainal Sacral Therapy - this is also to help the issues with his head and neck and will be more focused. I am hoping this assessment will take place in the next few weeks.
Hard to believe it's been 6 months! People are always asking how old is your son and they look at me funny when I hesitate - so I have officially decided to split the difference and call him 5 months for now rather than going into a long ditribe about well he really is 6mos but his corrected age is 4 months -- yadda, yadda, yadda...I am sure the general public is happy with my decision so I can stop boring perfect strangers with my tales of Cameron's age :)
We had a very nice thanksgving with Matt's family and Cameron made his very first construction paper turkey with Grandma Randi - he's quite an artist! We capped off the holiday weekend with a trip to the Lincoln Park Zoo lights on a balmy 55 degree evening!
xoxo Mom and Dad

Good news ...bad news

Cameron had his check up with Dr Reynolds (pediatric surgeon) yesterday, it was in record time we were there less than an hour and no chest x rays needed which was a huge relief! The Dr looked at the films from our Sept visit to the ER and the diaphragm is still growing in a dome, so the bad news is that Cameron is definitely going to require surgery to repair the issue. But the good news is that we don't need to do this now.
We will go back in the Spring for a chest xray and then likely schedule a surgery for late Spring/Early Summer. Hopefully Cameron will cooperate with this plan and not start having issues with his breathing. This way he will be a year old and we'll be out of the nasty cold/flu season.
So for now we just keep an eye on his breathing & eating to make sure he is not struggling. We will see Dr Alden in two weeks for a head ultrasound to check on the hydrocephalus and his shunt, he'll get another dose of Synagis and a flu shot and some other vaccines all in one day!!! just in time for his first Thanksgiving!
We are feeling very encouraged lately with his progress and he's such a happy boy it's hard not to be happy when with him :)
xoxo
Mom and Dad

Lions and Lions and Lions....OH MY!

NOTE -- i have tried to upload photos for the last two days and can't get it to work!! Hopefully I will soon - for now enjoy the reading material :)

So apparently every child in Chicago wanted to be a Lion for halloween! We took Cameron and Miller to a Halloween event in Lincoln Park yesterday and I have never seen so many Lions in my life! Or yuppies for that matter as Matt so quickly pointed out! But Cameron was by far the cutest Lion!
There was trick or treating, brats and contests - it was very fun and a beautiful day. Cameron saw his first celebrity while there - The Chicago Cubs' very own Kerry Wood (he's a pitcher for the non-sports fans).
We jammed all the Halloween fun into one weekend with a visit to the pumpkin patch (also known as a parking lot on the corner of Ashland and Wellington) on Saturday.

Prior to all the Halloween celebration Cameron had a busy week - Monday we had our appt with the NICU follow up Clinic, it was very long with various people coming in to see Cameron. They pointed out some additional exercises we should be working on with Cameron, overall they feel he is doing well considering his history. Which makes me question so is he behind? But I really think he's developing well, we know his weaknesses and we are working on them.

Wednesday was a visit to the Pediatrician - Cameron is now 14lbs 2 oz and 25.5" - he is officially off of the preemie chart! What a milestone! His head is now tapering off in growth so that is good as well.

Cameron got his first dose of Synagis, and it's only $1600 a shot - what a bargain! Seriously though it's worth it to lower his chances of ending up back in the NICU.

Cameron can now pretty much hold his head up on his own, he is much better with tummy time and has discovered his fingers - in fact sometimes he gags himself! And watching him try tp get his whole fist in his mouth is pretty funny - he certainly works very hard!!! We are very proud of him.
xoxo mom and dad

Happy Boy!

Cameron is such the smiling guy we can't get over it! Looks like he's going to be quite the flirt...he does this adorable thing where he smiles so wide and then gets all shy and turns his head into his shoulder.
He also working very hard on "tummy time" so that we can get him to lift up his head on his own. He is making some very good progress. Overall Cameron is on track in terms of development for his Corrected Age of almost 3 months but we are working with his therapists to close the gap and aim to get him up to his gestational age of 5 months. PT comes every Friday and we had the first appt with Occupational Therapy on Tuesday. Mom learned some new exercises to work on with Cameron. It's very hard to remember all the things we need to do with Cameron; anyone who knows me knows that I like a schedule and specific instructions so I'm learning how to manage getting in all the "therapy work" every day with Cameron - it's hard! And I will admit sometimes it's hard to hear all the things that Cameron is "NOT" doing that they'd like to see him doing, but we keep it all in check and are very proud of how far he has come!
This coming Monday is our follow up with the NICU Developmental Clinic, so it will be interesting to get feedback from their end.
Today Cameron got his eyes dialated, he didn't mind it too much. Right now we've got a good report on the eyes which is great. Hydrocephalus often can affect the optic nerves. So we will follow up in 6 months for another check. We are very happy and relieved to get a good report for now!
Next week will also be another check in with the Pediatrican and the first does of Synagis.
We are pretty sure Cameron is going to be a Lion for Halloween! We'll be sure to post some photos. For now enjoy these of him working on his tummy time, trying on his winter hat and spending some QT with mom.
PS - I want to clarify in the last post the 2nd photo is not Cameron, it's his friend Charlie. Some people were amazed at how big Cameron was - he is, but he's not at the 6month old size yet :) Charlie is a cutie!!!

Thriving is a GOOD word...

That's how the pediatrician described Cameron at our check up last week. We are so pleased to hear that Cameron is indeed thriving!
He weighed in at 13lbs 3 oz and is 24 3/4" - which is great. He's even on the chart for a true 4 month old (albeit in the low end of the percentiles) but the fact that he's even on that chart is great thing.
We also got the report back on the Kidney ultrasound, the dialtion is stable, still at a Grade 2 and his blood work looks good. We are now going to see the pediatrician every month vs every three weeks - another graduation milestone. Cameron will also get the monthly Synagis starting Oct 22nd to ward off RSV hopefully. Mom has had a nasty cold for over a week, and miraculously Cameron has remained healthy (even without the synagis). let's all knock on wood together!!
So it's been a good week for Cameron and we are so happy with all the good reports.
Cameron had a fun weekend with a visit from Annie the Nanny (aka our friend Anna from College) and his buddy Charlie came over with Emily and Jeff. Charlie showed Cameron how to roll over and hold a beer bottle, I don't think Cameron picked it up just yet but he'll get there, well at least the rolling over part I hope!!

On Sunday Dad ran in the Chicago Half Marathon and Cameron and Mom got up at 6am to cheer Dad on! Cameron was very excited about the event! Dad did great, finishing in an hour and 40 minutes - his all time best, we were very proud of him.

Mom has been doing a lot of research on Dandy Walker and we're considering entering a research study at the University of Chicago. One thing I have learned is that it is so often misdiagnosed. I want to make sure that I am the expert on all elements related to Cameron and his situation and to be honest the Dandy Walker thing is something I have just not gotten a full explanation on so that is our next project now that I feel we have the Hydro under control.

Of course we have not been without some sort of drama, Miller sadly had three cluster seizures this past weekend so we had to rush him off to the Vet, he's back at home and ok. They've increased his meds -- I swear if it's not one thing it's another!!!

We have NO Doctor appts this week - it's a miracle!
xoxo Mom and Dad

Two whole months? Really?

That's the word from Dr Alden - we don't have to come back for two months! It's a small step but a big one in our eyes. Dr Alden thought Cameron looked good and we will continue to monitor for signs of shunt malfunction or infection. The ventricles looked good on the Ultrasound - not any bigger and not significantly smaller. If they had drastically reduced in size that often leads to a shunt malfunction. So it appears the shunt is draining just the right amount.
We are still awiting the results on the Renal ultrasound and blood work to learn if the kidney dialtion is still Grade 2. I am hopeful to get that information today.
Physical Therapy continues to go well, we need to work harder on tummy time so that is our assignment for this week.
Last weekend Cameron had two special visitors - Kate and Rachel (mom's friends from highschool). We had a great time with them. They joined us on Sunday for the "One Small Voice" 5K walk to support Hydrocephalus and Optic Nerve Hypoplasia. This foundation was started by Zak's mom who we met at Children's when Cameron had the shunt surgery. It was a wonderful event and it meant a great deal to us to have our friends there to help support such a wonderful cause.
We are headed back to the pediatrician next week for a check up, and we'll get the schedule for Cameron's monthly Synagis injections as October begins RSV season.
I can't even believe that we are almost into October...we are accepting all suggestions for Halloween costume ideas for Cameron :)
xoxo mom and dad

Piglet status is officially restored!

Cameron is back on track weight wise! We saw the pediatrician last week and he was 11lbs 9oz and 23" they were very pleased. And so are we! He got another round of shots and we reviewed my standard laundry list of questions. All in all it was a good appointment for Cameron. We have not gotten official word, but unofficially Cameron should be covered by insurance to get Synagis starting in October to ward off a serious case of RSV.
We had our first Physical Therapy session on Friday, unfortunately Cameron got tired within 20 minutes, but we got a few things accomplished. Mostly focusing on trying to get Cameron to turn to his left side more. Faye our therapist even showed me how to use my yoga ball to do tummy time - I'll have to take a picture it's pretty funny to see this cute little guy on such a big ball. We then had Speech Therapy on Tuesday, and the therapist was very pleased with how Cameron is feeding, she wants me to try and exclusively breast feed again vs. supplementing with formula. We'll see, I feel as though I am attached to him 24/7 as it is...but they weighed him and he was 12lbs, so that is good. There was talk of me renting a scale to measure his intake after each feeding - sometimes I wonder if these people think I have all the time in the world and 8 sets of hands! But I really did like the speech therapist and she checked out some of Cameron's motor skills and was pretty impressed. So it felt really good to get some positive feedback. I feel like Cameron is really starting to thrive and I have to believe the shunt has something to do with it!
Today we had our follow up with Urology - we'll have another ultrasound of the kidney done next week along with some blood work. This way they will have a baseline to compare the kidney US done at 3 weeks of life - at which point there was some dialtion - a "Grade 2" on a scale of 4, so not terrible but there is some dialation, so we need to see where things stand now.
Next Wednesday will be a full day at Children's with the Kidney US, blood work and follow up with Dr. Alden - Matt and I will also celebrate our 3rd wedding anniversary that day --- what a way to do it :) Although we'd have it no other way than to be with Cameron.
So that's the report for the last two weeks - we are very encouraged by Cameron's progress lately, he is just such a sweetheart!
xoxo mom and dad

Never a dull moment...

Well I jinxed it! Just when I thought we were going to have a full week without a visit to Children’s…we had to take Cameron to the Emergency Dept on Saturday morning because he was wheezing and breathing erratically over a 24 hr period. Given his diaphragm issue we called Children’s and talked to the surgeon on call who suggested we bring him in – so they did a chest x-ray (the lovely torture device chair that Cameron enjoys so much) along with a CT scan of his head and shunt series scan to make sure there was not a problem with his shunt, as he had also been very sleepy and not eating well over the last 24 hours. So 3 hours later they diagnosed Cameron with a cold! Mom felt a little crazy, but all the Dr’s assured us that we did the right thing as it’s better to be safe given his many conditions. We felt bad for Cameron as he screamed his head off through the many tests and here we were putting him through it all for a cold. He seems much better today and we are relieved. Nana left today after a week long stay, it was so great to have her here! We are all sad she's gone!! Nana taught Cameron how to “run” (pump his legs up and down)– he’s very good at it and gets very excited.
That's it for now...

Two Reports

Report #1 Nuerosurgeon follow up last week - Dr Alden thought Cameron looked good and we couldn't agree more. Normally we have an ultrasound before all appts but for some reason not this one, so we had to do that after our appt which turned into a 3 hour ordeal. But the good news is that Dr Alden says the shunt is not "overdraining" and the ventricles look like they might be even a little bit smaller. So we are not going to change the setting on his shunt right now - which by the way they do with magnets. Amazing. When we asked if we need to be concerned about Cameron being around magnets the Dr suggested we just not let him play with a box of magnets - it's nice when they can break the tension with a good sense of humor. So anyone out there who was thinking a box of magnets would make a great gift - think again :). So although shunt is not the best looking device, it's working and that is what matters most. We continue to cross our fingers for no malfunctions or infections.

Report #2 - Fashion Police: (Cameron's perspective)
So the number of comments my parents received relative to my outfit in the blue chair - specifically the jean shorts - really got us talking. First of all, my parents did not dress me in some acid wash denim cut offs people - take it easy!! These jean shorts they put me in were rather adorable if you ask me. There was a cute little dog and firetruck on them, maybe you all didn't notice it was an outfit that matched my adorable top with the same dog and firetruck. I'll admit there are some questionable outfits mom and dad wear at times, but not me!!

In other news we are still waiting to get our first physical therapy appointment set, and Mom is really hoping it's soon. We head off to the pediatrician again next week and are hoping for a good weight gain report. Overall it's been a good week, as this was our first week ever since birth that we have not had to head off to children's or the pediatrician for a dr appt! What a milestone. Cameron is really chatting alot and he smiles a lot, one thing mom has noticed is that he always get very smiley right before a big spit up - which is a nice warning for mom!

Have a safe and enjoyable holiday weekend!
xoxo mom and dad

Another busy week

Cameron was busy once he got home from the hospital - a visit to the Pediatrician where he received another shot and apparently our little piglet is not piggy enough! He is not gaining the weight they'd like to see. For now we are chalking it up to post surgery, and we'll see where he is after labor day. He is 9lbs 8oz now - earlier in the week he was 9lbs 12oz - but I think we'd all lose weight if someone let us starve all day!
We met with the Early Intervention developmental assessment group on Friday in our home. They are going to get Cameron started on some Physical Therapy in the next 2-3 weeks - I am hoping sooner rather than later. He did well on parts of the assessment but does need some work in areas.
In other news Cameron has finally graduated from sleeping on Mom's chest at night to his crib - this was a very happy moment for all involved!!! Now let's just hope it stays that way!
xoxo Mom and Dad

The Longest Day...to coming back home

Cameron is back where he belongs - Home! After a two night stay at the hospital we are so happy to have him back. Friday was the worst day ever, with no food for Cameron all day and no clear answer on when we would get him into surgery - just lots of waiting. All we knew was there was a child that needed surgery before Cameron, so you really couldn't get too upset as it meant that someone else's child needed the Dr's more than we did.
We watched them take Cameron into surgery at 9:30pm on Friday and met back up with him in recovery at midnight, it was a relief to see our sweet little boy, but he was not looking good. Pale as a ghost and coming off of the anesthesia, tears overtook us. Seeing the shunt in place was something I could never have prepared myself for. The device is embedded under his scalp and the tubing runs all the way down to his belly. With time we have gotten more used to it, and he will grow into it, and eventually his hair will cover it up. But the initial shock was very hard; our hearts were breaking for Cameron and hoping he was not in too much pain. After a CT scan we got him up to his room at about 2am, Dad headed home and Mom slept at Cameron's bedside. Cameron was in the constant care Neurosurgery ward – along with 6 other post-op children.
We later learned the reason our surgery was pushed back - a little boy, Zach, who also has Hydrocephalus needed a shunt revision following a seizure earlier that day. I had to wonder was this our future. We met him and his mother who could not have been a sweeter family. We met another child at Children’s, Max, who was there for the 101.9 Mix 36 Hour Radiothon to support Children’s. He is 12 and has only had one revision is whole life. So you just don’t know what will happen. We can only hope for the best. Max was so sweet and came up to meet Cameron, his advice was to not let him play football. He really was just so cute.
I have to say being at Children’s during the radiothon just broke our hearts; we would occasionally go down to the lobby for a break and hear the stories of many children, some who did not make it and others who still struggle. In fact, if you tuned in really early on Saturday morning you might have caught mom on the radio telling Cameron’s story.
All in all this was by far the most difficult weekend for us, I believe in many ways we were blissfully ignorant to Cameron’s health struggles and now that you can see something is wrong with him he brings it to life I guess. There are times I have wondered if we will make it through all of this, but Cameron just started to smile at us late last week and that alone will keep us going for years to come.
I just want to say to everyone that you can’t take life for granted, treasure every moment you have with your family and friends and most of all if you have children hold them tight, tell them you love them daily, you are blessed to have healthy children – there were too many sad stories this weekend and no one should have to deal with such struggles, much less children.

Our next step is to see Dr. Alden next week for a follow up. We are aware of all the malfunction and infection signs to watch out for and are trying to keep it all in check. Thanks to all of you who sent us emails, text messages and voicemails it is so important during this time of crisis to hear from the people who love us.

Xoxo mom and dad

Surgery is scheduled

Cameron will go in for surgery at 1pm tonorrow. He can't eat after 8am tomorrow morning and will go to Children's at 11am for pre-op testing. This no eating thing should make an already difficult moning far worse. We'll update again after surgery. thanks to all for the prayers. xo

Bad News Bears...

As if last week was not hard enough we have just returned from the Neurosurgeon and Cameron will require another brain surgery. The ventricles continue to grow and fluid continues to build up. This is not at all what we were expecting as his fontanel seemed ok, nor wanted to hear. We always knew this was a possibility but I guess were hoping we'd get lucky.
Surgery will either be this Friday the 11th or next Thursday. Dr. Alden needs to consult with Dr. Reynolds regarding the diaphragm as that could pose an issue during surgery.
Depending on how things look when they go in they may try the same procedure again, but more than likley he will get a shunt. With the shunt the fluid drains into the abdomen , thus the need for consult with Dr. Reynolds as this fluid could also push "things" up in the diaphragm area which would exacerbate that issue. I have a feeling Cameron will ultimately end up with a shunt - which is just not what we want at all. We know that this his how most cases of Hydrocephalus are treated, but with the man made object being placed in his head it increases the risk for infection and could mean multiple surgeries in the future to repair malfunctions. You hear stories about children who have no shunt revisions and those that have 20 in a month. So it's such an crap shoot.
As we were in the waiting area prior to the ultrasound and young girl probably 7 years old was oohing and ahhing over Cameron and how cute and little he was, she was just in awe of him. He then began to cry so I had to take him out of his seat and when I picked him up and held him she said "his head is so big"..."I can't believe you can see all the veins in his head" ...her mother quickly said "you were like that too"... to make me feel better and ushered her away. In many ways I felt I had gotten the diagnosis that things were not good right then and there. Children are truly the most honest and perceptive people sometimes. She's right, he does have a big head - in fact the size of a 4month old and gestationally he's not even 4 weeks yet. And the veins being more prominent is quite commonem in children with Hydro.

So we will wait to hear tomorrow about the surgery date. One good note we did meet with the Dr from Kidney Diseases yesterday and he does have some mild swelling but not something they are overly concerned about. So long as he does not get an infection we will see them again at 1 year of age. Obviously when he spikes a fever we need to be extra cautious and he can't play contact sports but other than that it was an optimistic visit.
xoxo mom and dad

Cameron survives more testing

My heart breaks every time we go to children's for so many reasons, between the other patients going in for bone scans, chemo and the like you just want to cry. And then I have to watch them torture my sweet little boy. Tuesday was a Chest X Ray where they put Cameron in a torture like chair device, his hands strapped up behind him and his head basically in a noose. I was allowed to stay with him during the X Ray which was good and after some intial screams he settled down and almost fell asleep - I couldn't believe it. We then met with Dr. Reynolds, the pediatric surgeon, to discuss the X Ray and next steps. As she suspected the diaphragm continues to rise and therefore will require surgery to suture the diaphragm down. If it is not repaired it will impeded the development of his right lung, which of course is not good. At this point it does not appear to be bothering Cameron, and given the many other issues he is battling the Dr would rather wait till it shows itself to be an issue for him. The later in life we do this surgery the better for many reasons - it will reduce the time he would be on breathing machine, time spent in the hospital following surgery and allow us to get some of the other issues under control. Once Cameron stops thriving (eating and gaining weight) it will be a sign that this elevation of the diaphragm is causing him an issue - increased coughing, wheezing and difficulty breathing are also signs. So we are keeping a close watch on Cameron - right now he continues to eat well and is up to 9lbs. He does experience the occassional coughing episodes so we will track them.
While we were visiting with Dr. Reynolds she mentioned his fontanel seemed to be bulging a bit, I was suprised as I thought it was still feeling ok - after a moment of feeling like a horrible mother for not noticing this she did mention that she is not the expert. Couple this with a projectile vomiting incident the night before and Mom and Dad were very worried. So she paged Dr. Alden's (the neurosurgeon)nurse, she later came down to meet with us and checked Cameron out giving him the ok - thank god! We meet with Dr. Alden again next week so we can do a full evaluation, including Ultrasound and an MRI.
So that was Tuesday's 4 hour visit to Children's! On Wednesday I packed little Cameron back up for another round of tests - little did we both know that Tuesday would be a breeze compared to Wednesday. We headed over to radiology again, waited for our number to be called. We went up to Nuclear Imagaing for a renalgram - I had no idea what all was involved with this test - the IV team was called to get his IV going, I can't imagine all day going around the hospital and putting IV's in, but this is what they do! So there we were Cameron on this awful cold hard machine screaming his head off as they got the IV in and then it was followed by putting a catheter in which of course was awful to watch and I am sure even worse to experience. So after about an hour of prep work they were ready for the test. This involded takeing a picture every 20 seconds for 20 minutes to watch how the liquid flows through his Kidney while Cameron screamed...fun stuff.
It appeared to be functioning normally and then looked as though it was refluxing further into the test - which is odd as we were told it did not reflux when he had the VCUG in the hospital. So we'll need to get some more details on this situation. And then he needed one last picture which was quite a challenge as he has to lay completely straight and on his back (which Cameron does not like,he's more of a sideways kind of guy!) We got that done and waited and waited for the ok to leave - finally we got it, they removed the IV and Cath (almost worse coming out!) and headed home after 5 hours. I felt so bad for Cameron, he was so tired out he barely even ate when we got home, so we took a nap together and he seemed to be feeling a little better after that.
It's been a rough week to say the least. We will hold out hope for good news next week when we meet with the the Kidney Diseases doctor for the results of the testing and Dr Alden for the status of Cameron's head.
One good thing - at least it's cooling off for a few days around here!
xoxo mom and dad

It's been a while...

and Cameron's public is asking for more! We have been to many doctors lately here is a full report:
Cardiology was last week - Cameron still has the hole in his heart known as ASD (Atrial Septal Defect) it is only 3mm, therefore it will not require surgery (YEAH!!) we will continue to monitor this and return in 6 months for another echocardiogram. There is even a chance the hole could reduce in size, which it would then be termed PFO. Either way we are delighted that we can check this issue off the list for at least 6 months. Cameron still has the minor aortic valve leak and this will require antibiotics anytime he has surgery to prevent issues.
It's only Wednesday and we've had a full week already - Tuesday we made a visit to Northwestern to see Dr Julien, one of the Ob's in the Maternal Fetal Medicine group who handled the case prior to delivery. She took mom through the comparison of Ultrasounds from 20-22 weeks and then 29 weeks when we learned of the Hydrocephalus, Dandy Walker and absent right kidney. The differences were remarkable. Hard to believe still that there was such a drastic change, we still have no answer as to why this happened and likely never will. I inquired how often something like our situation presents itself so late in pregnancy, they rarely see this and when I asked for a number they said less than one case such as this per year. I'll admit it was hard looking at the ultrasounds again and "reliving" the intial shock of the news from May 5th, but at the same time I recall how devasting this news was as they showed us how much of brain did not look "correct" and yet when I see Cameron here it makes me believe what a true miracle Cameron is, and hopefully will prove to be for years to come.
Today we met with the case mgr from Early Intervention to discuss how we begin the therapy programs offered by the state. It's all rather confusing relative to insurance and all, but we'll take it one step at a time and start with an evaluation in the next 2-3 weeks with a General Developmental therapist and a Physical Therapist. They will come to our home to do the evaluation and make a recommendation for treatment. We then headed off to the Pediatrician's office for his two week check-in. Cameron is now 8lbs 12oz - he has gained the exact amount of weight he should which is great and is now 21 3/4 " long - also on track. His head circumference is now 41cm, it appear to be growing along the same arc and not leaping off so we are still optimistic. We'll know more in two weeks when we see neurosurgery again. Cameron was quite the trooper today, as he received 4 vaccines. We also learned that he is at increased risk for RSV - basically a respitory virus so we need to petition the insurance company to get him some preventive treatment for this as it's very costly - something about thousands of dollars per dose. The good news is there is someone at the pediatrician office who will handle this for us.

As always we are trying to mix some fun into the daily routines of dr appointments and we've been busy :) Cameron went to his first surprise birthday party on Saturday for his friend Charlie's mom. On Saturday Cameron's cousins, aunt lisa and uncle bryce arrived on Friday, and grandpa dominick arrived. Great aunt bettie threw a wonderful bbq in honor of Cameron on Sunday where he got all the cutest clothes and gear. Monday was a pizza party at Cameron's house and then Tuesday night Cameron went to his first concert - the Beach Boys and Ravinia! He loved it and we're so happy that we could share Cameron with everyone at all of these special events.

Next week we've got another full round of Dr visits - pediatric surgery for the diapraghm and some prep tests for the appointment with kidney diseases the following week....till then thanks for reading and continued support!
xoxo mom and dad

Watch me grow!

Cameron is now up to 7lbs 12oz, he is quite the piglet, he has almost doubled his birth weight at 7 weeks. The Dr's are very pleased, he spits up a lot so mom was convinced he was losing but apparently no need to worry.
We have gone for our 3rd pediatrician visit (and of course a different dr, it would make too much sense to have consistency!) Cameron received his Hepatitis B shot which he did not enjoy. His head circ is up to 39.5, at this point we are watching closely to determine if he is growing close to normal rate or not, so we will continue to monitor. He will get a full round of shots at the next appt in a week or so.
We go to Cardiology next week and meet with Child and Family Connections to discuss therapy and how that all works.
Cameron has been very busy lately beyond the dr's with many visitors - he met his uncle Ed and Grandma Ellen in Michigan City which was very fun, and his Great Grandfather and Moma were in to visit this week ...he loves everyone!!
Other than that mom and dad are learning to work on little sleep as it seems Cameron is very confused with when it's night time vs day time. Nana has been here all week and Mom will be very sad to see her go it's been so nice to have an extra pair of hands around!
xoxo mom and dad

Dr Report

A full day at the neurosurgeons ...Cameron had his stiches removed and a head ultrasound today. He did not even make a peep when they took out the stitches. It was harder on mom than anyone - no surprise.
His head is now at 38.4 and the ultrasound shows a slight increase in the size of the ventricles - not the best news, but not the worst either. The Dr would like to continue to monitor him as we have been and we'll go back in one month to check his head again with US and measurement. Ideally it will stablize and stay on a normal track for circumference, if not we'll look at the options and at some point after the early Aug appt do an MRI.
Relative to the Dandy Walker Variant - the dr told us he really does not even like using that term as it's such a catch all. There is a cyst in that area and there is fluid build up and all dr's believe part of the vermis is missing. Basically it's too early to tell what is going on in the cerebellum area. When we have the MRI we will have a better picture and he'd like to wait until he's grown a bit more before doing it again.
Tomorrow I'll be tackling the task of getting therapies set up for Cameron.
That's all for now....off to bed before the next feeding.

Week one report

It's been just over a week since Cameron came home to us! He is very mild tempered and really only cries when he change his diaper or if he's really hungry. Dad suggested we ask the pediatrician about how to change his diaper so he does not cry, I reminded Dad the poor guy just had some work done down there, and that crying is NORMAL.
Cameron sleeps, eats and poops, not much else - which is to be expected since in his book he should still be sleeping comfortably in mom's tummy.
We have made our way to two pediatrican appointments this week - Cameron is now just over 7lbs so we have officially taken him of the breast milk fortifer - which is a relief as it's one less process for mom and dad when making the bottles. His head circumference is at 38cm, upon discharge he was at 37cm. Maybe it's just wishful thinking but the fontanel seems to be consistent from when we discharged.
We have to admit there are times when we are quite overwhelmed, there is so much to stay on top of relative to Cameron's care and noone will care about him as much as we do. We are working on figuring out the Physical and Occupational Therapy system and what our next steps are. It's just very hard at times b/c you have to find a balance between enjoying the little guy and learning about all the various conditions to be sure we provide him with the best care possible. We had two trips to the pediatrician this past week and it's painfully obvious that we, as parents must be Cameron's advocates to ensure he is given the best chance for everything.
Wednesday is the big day for our trip to see the Neurosurgeon to check on the progress.
But it's not been all "business" this past week, Cameron went to his first BBQ on Saturday which he thoroughly enjoyed and a trip to the Lincoln Park Zoo with his friend Charlie.
Happy 4th Everyone !
xoxox Mom and Dad

I'm Free!

Cameron is now happily relaxing at home! We are so happy to have him here and Miller seems to like him just fine.
We got home just after 3pm on Friday and it's been good since his arrival, not much sleep but we'll take it any day to have him here with us.
Before we left the hosptial we met with all the important people and now have our long list of doctor appts over the next 3 months - Cameron will be logging a lot of car time that is for sure. It's hard to believe all the specialists we are going to need to be following up with and then add in PT, OT and various other things I often wondered how moms with healthy babies did all they do now I am really wondering how we'll manage all of this on top of learning how to care for a newborn at home. But we wil figure it out just as we have so far.
We are still crossing our fingers that the neurosurgery worked - right now it's up in the air as his head circumference is still increasing and the fontanel is filling up. We know all the warning signs to look for prior to our appt with Nuero should something happen that would bring us into see them.
We are holding out hope that another surgery is not near in his future, but recognize it could become a reality. For now we are trying to just enjoy having him at home.
oxoxo mom and dad