Spring Cleaning!

I decided it was time to encourage Spring to makes it's way to Chicago by changing the look of the Blog! We all need something new and fresh every now and again right !!!
Let me know if you don't like the new format and I'll find another one :)

March is here and that means only 1 Dr appointment for us - YEAH!!! Monday at the NICU clinic was enough to put Mom and Cameron over the edge. We spent over 3 hours there all so they could tell me Cameron is delayed in his Gross Motor Skills - which we already know. I understand the NICU clinic is a way to ensure patients don't fall through the cracks and for them to compile data on NICU babies, but keeping an infant in a room for 3 hours and expecting him to "perform" at irregular intervals without any nap is just ridiculous.

My attempts to discuss his weight gain with them were useless, since somehow between one therapist coming into the room and leaving the room she "lost" his chart. I talked to his pediatrician and we're just going to see where he is in two weeks for our regularly scheduled Synagis Appt vs. us making a special trip in there next week .

That's all for now! xox mom and dad

Super Star Patient

It’s hard to write a new post and replace the VDAY Picture, but Dad recently took this shot and it’s almost as cute ???

I’ll start by saying that for as many medical anomalies our little guy has you would never know it based on his demeanor. He really has been so GOOD these last few days spending hours at the hospital. We have to be thankful for the little things, and Cameron’s happiness is certainly one of them!

Wednesday we went in for the CT Scan, while waiting in the radiology dept for our turn we ran into one of his NICU nurses, she couldn’t believe how big Cameron was. She was wheeling a little preemie back up to the NICU, that certainly took me back to a place I’d rather forget, but I know I never will…
We made our way up to the sedation area and lucky for us our little STAR didn’t even need it, he was so calm. I told them it’s all the practice he gets  with CT scans. And this was on no nap and no food for the last 6 hours, he’s more of a trooper than most of us!

We then our made way over to the Clark St office to see Dr. Alden, he was running an hour behind so that gave us plenty of time to get our blood drawn for the Dandy Walker Research project and his allergy test. Again, Cameron impressed me, he cried for just a few seconds when they put the needle in but then he just sat there with no tears while they took two viles. Mom and Cameron then headed back upstairs with our matching Snoopy bandaids – we were quite the pair!

Our visit with Dr. Alden was fine, he showed me the change in the ventricle size from Sept to now and it’s unbelievable the difference in size. In September scans they looked to be the size of tennis balls and now they are more like the size of mini golf balls. He did decide to switch the valve setting from 1.5 to 2. Which means the shunt will not drain as much fluid, reason being he wants to make sure the ventricles don’t become too small. The amazing part is how easy it is to change the valve setting – Dr. Alden takes this small circle device that has a magnet in it and places it over the main part of the shunt on top of his hand and switches it to 2, it took all of 2 seconds. It was scary how easy it was, and made me think we should definitely never put a magnet anywhere near his head!
When I inquired about the head circumference and lack of growth Dr. Alden is not concerned at this point. He said some patients with Hydro tend to have smaller heads and he pointed out that his head circ is still growing, just not as fast as it once was. We will continue to monitor this, and we go back to see him in 3 months – May 16th, and likely schedule an MRI after this appt.
I was just so relieved that we did not have to deal with sedation! Way to go Cameron!

Today we saw the Orthopedic Surgeon for the 2nd opinion – the good news is he does not have hip dysplasia, this is 100% confirmed! There is definitely some tightness in his hips, legs and in general asymmetry that we need to really work on with the therapists. Our PT came to the appt which was so nice of her, she used to work at Children’s so that was very helpful. The take away from the appt was that Cameron has some increased “tone” in his hips and legs, this is a neurological problem. I’ll be honest things got a little confusing and frustrating at this point. From what I could take away it’s possible that this fluctuation in tone is a sign that the shunt might not be working as well at times. The PT who works with Dr. Sisson was going to discuss this with the neurosurgeons more. I always thought that the tone issues were related specifically to the Dandy Walker. In any event it’s all quite complicated. It gets really hard to continually be listening to all these different things that are causing problems – so much so that I can’t even get into the other details we discussed. My take away from all of this is that Cameron is doing remarkably well given his history! We are going to go back in 3 months to see the Orthopedic group so they can see how he is progressing and determine if splints or braces are needed.

This has been an exhausting few days at Children’s, we have one more appt left on Monday with the NICU clinic and then we don’t have to go back to CMH until April! – Thank God!!!
Here are our two boys cuddling together xoxox mom and dad

Happy Valentine's Day! *UPDATED*

I could not resist this little hunk!!! He is ready for Valentine's Day in his bday suit!
It is still snowing here and we are off to the pediatrician this afternoon for some Synagis and a check up and my list of questions. I'll send an update with any breaking news, but for now enjoy this cutie pie!
UPDATE:
We just returned from the Dr. I wish I could say we have good news, now I won't go so far as to say we have BAD news...but it's not the report we had hoped for.

Cameron still is not gaining enough weight and his head circ is not growing. He now weighs 16lbs 5 oz, this up 5 oz from last month, but under the 5%. The Dr. and I agreed to do another weight check in 2 weeks to see if it changes, if not we'll likley be going to see Dr. Reynolds to check on his diaphragm and see if that is the reason for the slow weight gain. Now, I did speak with one of my lactation consultants about this a few weeks ago and she said that breast fed babies do gain weight at a slower rate, so I am not entirely sure this is something to be overly concerned about - but we will of course err on the side of caution given his situation.
Head Circumference has not changed since last month and in the past two months it has only grown 1/8" - we are not sure why but the Dr. said he would need a CT scan, lucky for us (note the sarcasm in my voice!!) we are already getting one next week prior to seeing Dr. Alden. So we'll see what the story is there. The concern is that we need to make sure his brain is growing. The scan should tell us something in terms of his white matter vs. grey matter.
Cameron also gets a weird rash when he nurses, the pediatrician saw this first hand and think it's odd so we're going to get some blood work down to rule out any allergies.
Oh, and the hip issue has resurfaced, after two months of therapy everyone is still a bit concerned and so is the pediatrician, so we are going to get a second opinion as something is "not right" words from the Dr.

In other news we have the green light to begin adding fruits and veggies to his diet, how exciting he'll get more than oatmeal!! hmmm....what should we give him first?? :)

I am not really too concerned with the weight gain issue, but I am worried about his head circumference. We'll see what we learn next week, it can't get here soon enough in my opinion!

We'll save the helmet for his first bike ride!

We are happy to deliver some more good news, Cameron saw Dr. Vicari (plastic surgeon) today to assess the progress on his head shape and plagiocephaly. He was pleased with his progress and asked me how I felt about his head shape. I am fine with it, not only do I see an improvement, so do many of his therapists. With this in mind we are not going to be pursuing a helmet to help shape Cameron's head. This just goes to show how hard Cameron has been working and how wonderful all of his therapists are!

He was quite the flirt with this nurse, it was so cute!!

I must admit the frigid temps this weekend made Cameron and I very jealous of Dad in sunny and warm Miami. Too bad he couldn't bring home a Bear's victory!!

We had a wonderful visit from Grandpa and Grandma Ellen on Sunday. Cameron got his first taste of frosting on the "Go Bears" cake they brought. It was pretty funny, I don't even think he realized what it was. Really he seems fine with his oatmeal these days. He's making some really good progress, taking at least one meal a day of oatmeal. We are working to increase this and slowly introduce other foods.

Saturday night Aunt Amy came over to keep us company and fed Cameron his oatmeal and enjoyed bath time!

I do believe the 'bug' has left the building! And after a little experiment of my own I think part of the culprit is the new Hypoallergenic formula the Dr's wanted us to try,...we'll see how he progresses.

While we wish the Bear's had won, Cameron is doing very well these days and that's great news. We've got a review with a Developmental therapist later this week and next week if full of appointments...
- Our Early Intervention 6 month meeting with all the therapists to review his overall service plan and progress to date
- PT, OT, ST and CST
- Synagis and a visit to the pediatrician

Hopefully we'll have anoter positive report on all fronts!
xoxo stay warm!!!!!