A nasty bug...

has been living in Cameron's tummy for the last two weeks! I am crossing my fingers as I write this - But I think it's on it's way out the door! thank goodness!!!
The poor guy has had diarreah for two weeks and low grade fevers on and off. I have not posted about any of this, because to be honest I don't think anyone really wants to read about what's going on each diaper change! When the blood returned we put another call into the pediatrician and they thought maybe it was a milk protein allergy. I was told to go off of dairy, as I am still nursing. Also we were to switch his formula for any supplementing to this super expesnive hypo allergenic formula.

Let me just tell you after 48 hours, I needed some cheese!!! I love dairy and I will do just about anything for Cameron but this is where I draw the line! Ha ha! Oh and by the way dairy is in just about everything we eat, and I just didn't have the time or patience to become this obsessive label reader and creating a special diet for myself.

Seriously though I have spent days and days researching this, discussing it with all sorts of experts and I am going with my gut here and decided it was just a really bad bug that got his intestines all out of sorts. So I am back on the dairy (although I have not had any actual straight milk).

And we've only had one "blow out" today which is a vast improvement from where we've been!

I am sure some of you are saying, you know maybe I didn't need to know all of this - trust me I have spared you the details of my daily journal that logs every single "move" this boy has made over the last two weeks.

We did start Cameron on some oatmeal, after he shunned the Rice Cereal - he is making some good progress each day with the spoon feeding. We've been told to wait a while before introducing any new foods to be sure we get the "bug" under control.

Oh and YEAH Bears!! Dad is off to the Superbowl next weekend - lucky guy! Cameron and Mom will be relaxing at home. We welcome any and all visitors!!!

Xoxo

SPECIAL REPORT: GO BEARS!!!!

Cameron is all geared up for the game today! Dad is leaving soon for Soldier Field so Mom and Cameron are going to watch the game at home where it's warm and free of snowfall! Dad got him all dressed up today.

Game time is 2pm, Cameron has therapy at 4pm so he'll have to take a quick half time break but he'll be cheering them at the end!

GO BEARS!!!!

A Good Heart!

There's no debating that Cameron has a good heart! But now we can confirm he has a HEALTHY heart!!! yeah!!!
The ASD (hole in the heart) has closed up. The EKG and ECHO went off just fine on Tuesday, it was long process but the results could not have been better. He does still have the "trvial aortic regurgitation" but it is "trivial" so they are not overly concerned. We will go back when Cameron is 3 yrs old for another ECHO to see if it's something to continue to monitor or a non-issue. He also still has a murmur but we can officially call it "innocent" as nothing showed up on the ECHO to indicate a cause.
During the ECHO intially Cameron was squirming all over the place they were having a hard time getting image, so after a bottle he started snoozing and so did I nearly the room was so warm and dark!

Today we went to the pediatrician for a check up and Synagis - Cameron HATED the shot, usually he does pretty well, today, not so much. Oh yeah and we got the cultures back from his weekend bout of the Gastro flu - Yes, that's right he got the FLU again over the weekend. The good news is he was not vomiting, just coming out the other end. I wasn't really concerned since we had just been through this, but when there was some questionable fluids (blood and mucous) we placed a call to the Pediatrician. They checked him out on Sunday and we dropped off samples for culture at Children's just to be sure there was not any bacteria. So the cultures came back and he's all good no bacterial infection. His Dr said it's likely Rotavirus, he's improving so that is good.
Unfortunately his weight gain is still not where they would like it to be - he's 16lbs, which puts him in the 5th percentile. Here's my question (and any mom's or Dr's reading feel free to respond). I get it, the 5th percentile is not ideal, but it's not like he's off the chart completely, so is this a real big concern?

I guess they are worried b/c this could be a sign that the diaphragm issue is causing a problem now, as failure to thrive is a sign we are to watch for. Dr. Johnston said he might need to have the surgery sooner than May if the weight does not increase - we'll see. We both agreed he did just have the flu twice so we'll wait till next Month and see if he starts packing on the pounds!

His head circumference, which was the other questionable item from Dec,has increased, not by much but it's up. To be honest the first measurement she took showed no increase, so we tried again and it went up 1/8 - I mean we are talking minute measurments here so I'm not really sure what to think. We'll discuss with Dr. Alden in February. For now I am not going to worry about it.

While the weight thing and the flu thing is of some concern, we are going to focus on the fact that we can pretty much eliminate the Heart from our list of issues which is wonderful!

Mom is off to the Oprah Show tomorrow - a big thanks to her friend Emily for inviting me!!! I can't wait, it will be such a fun day! And I must again thank "Aunt Amy" for taking care of Cameron tomorrow so I can go meet "O"!!!

XOXO

A New Year...

Oh boy I don’t even know where to start I feel like it’s been a whirlwind of activity lately – and not all bad!!! Which is good to report.

Let’s start with the Hip Saga – so as it turns out they did get the hips in the X Ray and we are not dealing with a bone issue, which is a good thing. It’s a postural issue that we will work on with therapy. The idea is that with therapy the hip abduction and leg length discrepancy will improve. Will it ever totally correct itself? I have no idea. Should the problem become worse we will go back to the orthopedic surgeon for reevaluation prior to one year mark. I am going to discuss all of this in more detail with the pediatrician next week just to be sure. And our new PT is so great she is going to share all of the dictation reports from the appointment with her fellow PT’s to be sure we shouldn’t get a second opinion. She used to work at Children’s so she is very familiar with the process, in fact she even offered to go with me to the appointment if we do get a second opinion – how nice is that!

Yes, we have a new PT on the team, it was a very hard decision to let our other one go, but at the end of the day I have to do what I think is best for Cameron. After only two sessions with Stephanie I really feel this was the right move.

The Cranio Sacral Therapy is going well, I see a change in Cameron’s head and face shape which is good and so does the therapist. We go back to see Dr. Vicari about the plagiocephaly and torticollis on Feb 5th. It will then be decided after another scan if Cameron needs a helmet. To be honest even if they tell me he should get one I might not do it if he is borderline. We’ll see.

We also got in to see a Neurologist at Children’s – Dr. Bassuk, who Dr. Dobyns had recommended. What a great Dr. ! He was so good with Cameron and I really am glad he’s on the team. He has a specific interest in Dandy Walker children, which of course begs the question why am I just now meeting this man!! He is at Children’s and works in essentially the same Dept as Dr. Alden the neurosurgeon, so why I never got connected with Dr. Bassuk until I pushed for it is beyond me. But all that matters is we’re working with him now.
He did not tell me anything different from Dr. Dobyns – he echoed the sentiments that Dandy Walker kids have a range of outcomes. Those that present with more than just DW tend to face more issues so in that respect Cameron is at a disadvantage. But he also noted that Cameron is doing well in many areas and agreed that coordination would likely be where Cameron will struggle or be delayed.
I did learn that one in every 10,000 births results in a DW baby. And Dr. Bassuk sees about 3-4 new babies per year with DW. So it’s a pretty rare syndrome. He is also conducting a research study that we agreed to participate in. I feel fortunate to have found Dr. Bassuk, and he wants to follow Cameron’s progress so we’ll see him in 4 months. Should Cameron develop seizures or start regressing in any areas Dr. Bassuk is on board and aware of our case which is great.

Next week will be another busy one--Tuesday, a trip to Cardiology to check the status on the ASD (hole in the heart) Cameron has an EEG scheduled and some other tests, but I am anticipating a good report! And hopefully we can cross Cardiology off of our specialists list after the appt. We always will need to be sure to mention the “aortic valve regurgitation” for future surgeries and dental appointments but if we can not worry about the ASD that would be great.

We also head back to the Pediatrician for another dose of Synagis and I’ll be anxious to get a report on the head circumference and weight gain. When we saw Nuerology this past week his head was at 44cm which is where it was in Dec so I am a little worried but we’ll see.

And a new year means we’re back to zero with insurance! I had the pleasure of paying $1,000 to get the Jan dose of Synagis mailed out for our appt next week! A trip to Mexico sounds much better, wouldn't you all agree  but if this keeps Cameron out of the hospital GREAT!

February will bring another busy month several Dr appts at Children’s, but right now according to our calendar we have no appointments in March at Children’s – YEAH!!
So that is something to look forward to!

In non-medical news we celebrated Christmas with the Dominick side of the family last weekend and that was very fun!! Cameron received some wonderful toys!

A special thanks to “aunt” Amy for helping mom out so much in the last 3 weeks – I’d be lost without you my dear friend!!!!

And yes Cameron is still teething but no actual teeth have sprouted. Here Miller is showing Cameron the best way to relieve the pressure!!!

That’s all for now – Happy New Year!
Xoxo