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