Jump to content

Update on my daugther Marissa


Guest Mary from OH
 Share

Recommended Posts

Guest Mary from OH

Believe it or not??!!! Marissa's GI motility specialist JUST called me!!!! I'm glad I was sitting down, or I might have fallen!! :huh:

She said that she had talked with the head GI and apologized for me feeling the way that I do. She wants to see Marissa in clinic right away (at no charge!). She said she loves Marissa and wants to help.

We made an appt for Monday morning and she assured me that she will have a lot of time to spend with Marissa. I'm hoping that this is a good sign!! And that we can move forward and keep progressing! I keep wanting to pinch myself to make sure I'm not dreaming. Plus, it's sad, but I also think, oh, how long will this last...

Isn't that bad?

But, for now, I will be happy and wait until Monday and have a captive audience and get my angel some needed relief!! Thank you all for your support!! You've been the best!!

Link to comment
Share on other sites

YaaaaaaaaaY!

That's such wonderful news. GOOD LUCK! I know the feeling of "how long will this last..."...but take it while you can get it and take one day at a time...don't worry about the next battle until you have to.

I'm smiling for you.

Kristen :):huh::)

Link to comment
Share on other sites

Mary, I am so glad you shared this good news with all of us. I think there have been a lot of people sending love and prayers to you and Marissa and let's hope that you will get some answers. I hate that she will need to go through so many tests -- she must be one brave little 5 year old -- but I will keep praying she gets help....and you as well. all the best!

Link to comment
Share on other sites

Guest Mary from OH

You couldn't imagine all the tests this poor child has endured in her short little life!!! And for so many of them, they like to have the parents (aka usually MOMMY) hold them still!! So much fun!! NOT! She is one brave little girl. Although, we have rightfully gone through periods of her being terrified of anyone in white coats!! Also, now she is VERY smart and I have to explain everything in detail to her before she lets anyone touch her. One of her first questions before we see a dr is "Are they going to put a tube down my nose or up my bottom?" SHe also usually wants to know if she's going to have to give blood. And you're not allowed to say blood. You have to spell it or say "b". She's quite the character!!

Link to comment
Share on other sites

Mary

Congratulations on your great news!

I'm so glad that she will get the help that she needs. I hope they address any pain issues and have a game plan in mind about her treatment.

I think that you should also let them know the **** that they put you through and how outrageous it is to let your daughter suffer in pain, it doesn't matter what her diagnosis is. You just don't tell a 5 year old to get use to pain and deal with it.

Link to comment
Share on other sites

Guest Mary from OH

Me too!! I'm going in with that in mind!! I'm hoping to go out with that plan and what to do when this "lack of communication" happens again. I'm tired of my baby suffering. If somehow, I am not communicating her needs well enough, I need them to tell me how to do it better. (personally I can't imagine that because I can be pretty outspoken). Granted sometimes I will forget some things because of the POTS, FMS, etc. but, I usually try to write things down so I don't do that, or I'll call back later with questions. I'm just tired of feeling like she's always "brushed off" for someone "sicker". A child should never have to "suck it up" and "just deal" with pain!

Link to comment
Share on other sites

Mary,

I apologize for not having posted earlier, but it's been a busy week ... I just wanted to say that I am so glad Marissa's GI doc will be seeing her. It brought tears to my eyes thinking of a child in pain. I think those of us with healthy children take their good health for granted sometimes, and your situation made me think more about this.

I am thinking of you, too, not just Marissa, and hoping you are able to become stronger so that you can continue being a wonderful mother. Try to take just a little time for yourself, too. Of course, people tell me to do this, and sometimes I just don't want to leave my daughter. So I ask them if they wouldn't mind coming over to help keep an eye on her while I lie down. That way, she is well cared for and I get to visit with that person and spend time with her!

Amy

Link to comment
Share on other sites

Guest tearose

Mary, finally some good turn of events!

I'll be looking forward to hearing more good news!

I hope there wont be too many tubes or b tests!

Hang in there!

... and when you can please tell us you did finally made time for a cup of tea or a nap...or we'll be really mad at you next!!!

hugs, tearose

Link to comment
Share on other sites

Dear Mary, I'm glad things are begining to work out for you, I hope it continues for a very long time. Per your smart little girl, bravo! They need to know what is going on to. My daughter has learned a lot about medicine from having to come with me to the doctors and the hospital a few times.

Good luck and may everything go smoothly from now on.

Blackwolf

Link to comment
Share on other sites

Mary, so good to hear some good news form you. I have been worried about you and Marissa. I haven't posted in a while but I am going to try and catch up on the posts over the next several days(as I can)

Just know that I am thinking about you and praying for you both.

I miss talking with you.

LOVE,

Danelle

Link to comment
Share on other sites

Guest Mary from OH

Stephanie-

Thanks for the suggestion. We DO that already!! :wub: We use it both for her tummy pain and her migraines!! When we went to her last appt last Friday, she told the dr the #'s of her tummy pain and how high they have been and that it has been every day. I was proud of her for articulating herself so clearly. I think that's what made me even angrier at the dr. We started with a simpler smiley chart (1-5) when she was younger and have progressed as she has gotten older and wiser (and her pain has gotten worse?).

Tearose-

Don't be too mad at me. I don't usually take too much time for myself. I do, however, usually go to a pottery class on Tuesday nights. So, I do do one thing for myself! And tonight, if I can muster up enough energy, I would LOVE to take a bubble bath. (not sure if the energy will hold up though).

Thanks again everyone. I will have to prepare myself this weekend for Monday!

Link to comment
Share on other sites

Mary,

This is wonderful news! I'm so happy for you all! I'm sorry to not posted earlier to you; I've been fighting my own little battles here and have had barely the energy to get through that! I am going to post you a note soon, though! Keep up the faith and know that I'm praying for you, your husband, Marissa, and the doctors!

With love,

Angela

Link to comment
Share on other sites

Guest tearose

A pottery class? That sounds fun and creative! Do you hand build or throw on a wheel?

I'm picturing you sculpting a mini GI doctor next Tuesday night and then accidently...punching the daylights out of it!!!! :P

take care, tearose

Link to comment
Share on other sites

Guest Mary from OH

Tearose-

I do both. I'm not that great, but it's a great stress reliever and the ONLY time I'm ever able to get out of the house alone and for ME!!

You made me laugh REALLY hard!! I have a vodoo doll like image in my mind!! But, alas, I'm not very good at sculpting at all. But as long as I knew it was supposed to be the GI dr, that's all that matters!! :)

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...