Wednesday, March 18, 2009

Roller Coaster Week

Well you would think we had some time to relax last week but we were completely busy the entire week. With little sleep and constantly on the go we have been beyond exhausted. When you are constantly meeting with doctors, doing new tests, constantly making sure medication is taken and ordered, plus normal life of work and 24/7 stress and worrying about your child you are easily worn down and get grumpy.

I have been working on the grumpy part and trying to keep smiling but the past few months have just worn us down. My dream someday is to only have to worry if my towels match or if I have curtains on my windows! :)

Last weekend I got Haven's chemo in my eye - we washed it out but it BURNED. Then the next day while trying to use hand sanitizer I got a big squirt of that in the same eye. Now my eye has been swollen for over a week and it hurts more and more everytime I blink!

Monday I left for California for two days - which was nice because for the first time in a very long time I was asleep by 9pm and in a bed. I woke up in a panic around 130am and sent Kris a text....forgetting it's 430am in MD! :) So I went back to sleep to catch my bus to the airport at 415 am.

While on a layover in Denver I received a phone call from Kris who was clearly upset. He was at Haven's Podiatrist appointment - and I have purposely stayed away from the computer to clear my head about this - but through a really painful conversation with the doctor we will NOT be doing her toe surgery next week. We are looking for a new Podiatrist though. Enough on that....

I spoke with another mother of a ROHHAD child for the first time while in CA. Her daughter was diagnosed and on a ventilator since October 2006 - she passed away this January. Hearing her story just broke my heart in to a million pieces and has torn through my head all week. I even called to talk to Haven's Oncologist about her levels and decided to break down crying to him, drive the wrong direction on the freeway, and get stuck in traffic all at the same time. He reassured me today that I am ok and he is completely understanding of my anxious, worried, and insane concerns about Haven.

So it's only Wednesday and I have hit every emotion possible in 3 days!

By the way, Haven is of course doing great. She is sad that everyone left her at the same time but Lauren came today and will be here tomorrow. Haven had a lot of fun with her and told me how much she loves when Lauren comes to be with her.

Anyway, it's 11pm and Miss Haven has decided it's time to wake up and hang out. :)

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