Still waiting...PATIENTLY!

It has been more than 1-2 days like the doctor said it would be. I am sitting here, 6 days later to hear from C's pediatrician with his final MRI results. I finally phoned the hospital today and am hoping to hear from his doctor tomorrow. I am keeping those fingers and toes crossed for word that my son is even more perfect than I already thought he was.

As far as our blood test goes regarding Con's chromosomal issue, the genetics counselor said we should get the results next week.

waiting sucks...

I miss this so much...

so tiny, helpless and adorable.

700 pounds just lifted off of my shoulders....

This will be very brief and I will update in details as we know more info but, Connor's pediatrician just called a bit ago and said she got the preliminary report from the hospital regarding Connor's MRI. As far as Leukodystrophy is concerned, it is NEGATIVE. Those were the best words I have EVER HEARD in my life. I started smiling and bawling my eyes out. Eric looked at me and new immediately that our son was not going to lose all of the skills he is learning now and he too started crying. This was the news we prayed for each night in the weeks leading up to this test.

The doctor said the real results will be received in a day or two and we will find out then what is really going on with his little brain but they are certain it is not Leukodystrophy.

I honestly cant tell you how awful I have felt the last few weeks knowing that I might lose my child by the time he is ten. I hope I never have to know that feeling again and I feel for anyone who has had to go through this.

I thank God for my child every day and as of tonight he just became even more wonderful than he was this morning.

This is the best day EVER.

Now if we can just get going with the genetics doctor things really will look up.

Not a happy boy...

Today is the day we take C in for the MRI. I have come to the conclusion that what ever the results are, in the end we will all be just fine. I just cant imagine him have Leukodysrophy and I think because my heart is telling me that it is not that, things just feel a little better.

Connor is not a happy man today at all. He was not allowed food or drink past midnight. He is a thirsty hungry boy right now and is not happy that I am having him stay in his crib (heck, its 630 a.m., he should be sleeping). I know he wants some milk, he is thirsty. I am hoping the drive hospital will be quick. I am almost positive he will be fussy the whole way. It will be breakfast time.

As soon as he wakes up from the test, we will have milk and oatmeal waiting for our brave little man.

I must have made it up....

So, I have been preparing myself with a list of questions to FINALLY ask Con's genetics's doctor face to face. This Friday, July 1o, has been marked on my calendar since June 10.

I emailed his genetics counselor today to confirm the appointment and she emailed me back stating that she spoke to the appointment office and CONNOR HAS NO APPOINTMENT FOR JULY 10. WHAT THE FUCK? (Excuse me). I have been waiting for a month to finally see this doctor face to face and get some freaking answers as to why he is missing a piece of chromosome and why it has trans located itself to another chromosome.

They had absolutely no compassion for my situation which made me even more upset and more angry. I was in tears screaming at this woman on the phone accusing me of never calling for the appointment. I finally said, "so your saying that I am making this up"? She proceeded to tell me she never spoke to me. I guess I must have mysteriously marked it on my calendar and both Eric and I took an extra day off of work just for kicks.

I am appalled by the lack of bed side manor these folks have. I tried my hardest to explain how useless it is for me to receive these results over the phone and then play phone tag for weeks just to get answers to my questions on my answering machine.

I told the genetics counselor that she needs to fit me in on Friday, July 10 and she told me they were booked to capacity. Yeah, booked with Connor's appointment.

Connor's new appointment is SEPTEMBER 8. We will see the doctor and the cranial facial team that same day. They emailed me and told me that if there is a cancellation we will be the first to be told about it. OK, and that does what for me?

Connor's MRI will go on as scheduled this Thursday at 8a.m. At least I know his pediatrician will phone us with the results and let us know weather or not we are looking at Leukodystrophy or not.

I can honestly say I have never in my life been so angry at a doctors office. I don't know why it is that some offices have no feelings what so ever for what families might be going through.

my little hot dog....

Not too happy about the hot dog crown but, we could not resist.

The happiest baby in the world...

NOT ALWAYS.

this is what happens when you combine too many toys and the need to get ready for bed.