I know I will never know everything but I am sick of learning something to learn another unknown. I just want to find out what it is, what we can do, what we need to look for, and what does it mean.
It seems like a easy four questions or at least one would think. But in reality they are not. We got to see the pedi neurologist but have uncover more unknowns and now need to see a pedi hematologist/oncologist to check to see why his protein c and protein s levels are low.
Trying to find out what that means online is even more of a scary thing then the unknown.
We also started the seizure medication today this morning he tool 1 ml and tonight he will get another 1 ml. We have to do 1 ml 2 x day for 3 days and then 2 ml 2 x a day for 3 days and then 3 ml 2 x a day for until well unknown at the moment.
This is an emotional rideI never thought I or us would be on but it only makes me remember to never ever take for granted anything in life to live each day to my best and tell everyone what they mean to me daily.
I just need to stop and enjoy Sean and Patrick and the spring that is suppose to be here. But wait we are in Chicago and it is suppose to SNOW tonight!
I did the March of Dimes- March for Babies yesterday and I raised over $1,000 dollars this year. Sean did not walk with us this year since it was 39 degrees. We walked 3 miles and I felt really good and proud of my team. We almost raised $3,000 dollars. Every dollar counts.
4 comments:
I understand exactly how you feel, it's horrible, I would not wish this on my worst enemy. I too never thought this would be what it was like to be a mommy, that the first six months of my baby's life was going to be filled with doctors, specialists, "unknowns" like this. It really makes me feel a lot more vulnerable but also a lot more appreciative of the small things.
Sean is such a cutie! Best of luck from someone who is going through similar pain, stay strong, thats all we can do for our little boys!
Awe thanks. I know I had the same thought the other day. No one should have to go through all of this.
Our babies are making us stronger and stronger every day. Hugs to you and I am glad we have each other to talk too.
Erin
Hi Erin,
That's so great (re: march of dimes). Good for you for raising all those funds :) I have to admit, a tear came to my eye when I was reading your post. It's so heart wrenching having to wonder how, why, what if's and what nows. You can't help but think why our little darlings, it's just not fair..those are the days I feel our babies are stronger than us :) and than I get my strength back. It's a long journey ahead for us all..your doing great..everything will even out eventually. Sean is such a sweetheart!
Take care for now.
Christine & Gabi
Christine,
I could not agree more they are stronger and make us stronger. It is scary place and feeling to not know what may be ahead but god gave us our little ones to make us stronger and make a difference.
Gabi is so pretty and she will continue to amaze you and those around you.
God bless our little miracles.
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