Wednesday, November 17, 2010

Miss Mariska is 3!

Amazing she is 3! She turned 3 on the 14th. Had an awesome tiny, just the grandparents over Abby Cadabby Birthday Bash.  She is such a little fighter. They have been 3 of the most stressful years of our lifes but they have also been the best and most worth while. We love our little girl with all our hearts.  Happy Birthday my sweet heart!

*I'll post pictures soon*

Tomorrow it has been 4 months since Mariska was given a second chance at life and was gifted with a new Heart. The donor family will never be far from our minds. We pray for them and are over whelmed with their unselfishness to gift another life when they had to say good bye to their own. Someday we hope we'll know who they are and share our gratitude.

cath/biopsy number 6!

The day before Same day surgery called and did all the pre paper work. Got a chuckle from some of the questions, havent been asked some of those in a very long time. The lady also asked me to list every med Mariska has been on for the past 30 days. Told her she was going to make me bust out the book. She laughed and said to bring it with us when we come in. They liked the printed med list we bought in with us. Love the small things that make everyone life better!  

My mom *Grandma B* got to come with Misky and I for this cath. Helps having someone there with you. Thanks mom for all the help! <3  I never sleep well on nights before we walk into PCMC ever that night was no different. That trip we had with rejection made sure I would never again. Maybe with time I hope.

Mariska was on the grumpy side that morning, Next time we take her to the lab we'll give her something maybe after she picks a toy. She wasnt to happy with me leaving her there. Breaks your heart to hear your child crying after you and having to keep walking.

Her heart looks awesome and no signs of rejection!! Takes such a load off my shoulders when we get a good report.  

No rejection also ment we could stop IVIG early!! cant say how happy I am about that. This months was going to happen at home. Which I was feeling uneasy about. Kind of like keeping the pain at the hospital and not having it come to the house.

Her docs didnt like the risk of doing IVIG again this month after some kids have had bad reactions to it. Mostly for the A blooded kids. *which she is!* there are to many A antibodies plasma in the mix wish can attack their own blood... shutting down other organs! yeah not want we want at all. Pretty scary to hear its happened to others.   She has had a really bad head ache about two days after each treatment. Last one took her almost a month to get back to her self. Think shes still feeling pretty crummy from it still.

Since her heart cath looked good and her echo looked the same also she got to come down on her steroids again. .4mls onces a day now. Cant wait until shes off this drug, and she can be back to her normal self.

Cant tell if its her meds that make her feel icky or if its something else like not being able to be around people being the social butterfly she is. She just hasnt been as happy. Kind of moody and unwilling to eat much.  Sam says shes eating fine. Think I got used to her eating like a teenager and its messed up how much I think she should eat. Making things fun and changing it up so she'll eat it has been tricky.  Today she did eat squash and a bunch of noodles. And didnt throw up!

She is still throwing up now and then. Mostly in the evenings after meds. some of them just are just plain nasty. I want my happy willing to take her meds baby back. Anyone mind sending that back?

Tomorrow she has clinic. Also a bunch of labs. They forgot to get some durning her cath..... ... ... Yeah I know. I beg for finger pokes. Heart momma's anyone else not liking the new lab drawing team?.. They stress me out.  I'll stop there, lol you all know how I feel about that place. Just has to be done.  

Thursday, November 4, 2010

Heart Cath and Biopsy tomorrow.

Mariska is doing really well. She stopped throwing up once a day for almost a week now. Changed to anti acid med. As long as she has something in her tummy she's fine and dandy.  Over the moon that its not those bubbles again.

If you are willing, we would appreciate the prayers for Mariska and her docs tomorrow. Also for my self so I can remember everything said. Had a very bad migraine attack last night and just dealing with the after damage of a week long head ache.  I will post when we know results.  Borrowed a request from a friend to share also. I'll post it off and on all winter.

So here is our friendly request to our dear friends, neighbors and family. PLEASE, lets us know if you or your kiddos have been sick and will be having contact with Mariska. That way we can make a decision on whether we need to change our plans and stay home.
If you have spent time with her recently and end up getting sick, let us know as well. We understand that you may feel well one day and sick the next. This is in no way to make someone feel bad, but it helps give us an idea of what it could be if she does end up sick. For a regular kiddo, no biggie. But for Mariska this will save her multiple blood draws (and tears) as they run labs to figure out what type of illness she has. So think of it as doing Mariska a favor and Please just give us a heads up.
Also, if you happened to get the FLU MIST and will be in contact with Mariska please let us know so we can stay away for a couple weeks. We have received a letter from cardiology stating that because the Flu Mist is a LIVE vaccine it could be contagious to Mariska. Therefore, we are to stay away from those that have received the mist and ask those that will be in contact with her to get the SHOT instead.
Thanks for always being so so good about all of this. We hate asking this of others but we know of the major impact this could have on Mariska's health and in all honesty her life.