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