Tuesday, February 23, 2010

This is How I Feel

I normally stay away from sharing how I feel about things on my blog whether it be personal, political, or religious.  I like to keep the atmosphere here light since this blog is about Belli and her personality is nothing but light and fun.  But I have been feeling a little angry and kind of resentful lately about some things and my readers have always been so supportive so I thought I would use this venue to vent.  In the grand scheme of things these issues that I am about to talk about aren't really that heavy but they have been weighing heavy on me lately.

I have been very stressed lately about Belli's eating, or lack there of, and her constipation issues.  I spend the majority of my time with Belli either trying to get her to eat, trying to get her to poop, or cleaning up her throw up when she gags herself because she doesn't want to eat.  I'm not exaggerating when I say that this really is what I do the majority of the day.  It is so frustrating because when she won't eat or poop sometimes once I am done trying I end up not enjoying whatever else I am doing with Belli because I'm mad that she won't eat or poop.

We went to her GI yesterday and she is finally back on the growth chart which is good but the doctor upped her dose of Miralax and referred Belli to an OT for feeding therapy.  I am hopeful that this will help her eating  but I am also realistic.  They use a lot of trickery to get the child to eat but quiet honestly Belli is smarter than that.  I just don't know that it will work.  We will see.  The upped dose of Miralax doesn't seem to be working either.  She has had two teaspoons the past two days and still hasn't pooped.  I just don't get it.

Another thing that has really been bothering me is what Belli's neuro told us last week about how her head might be tilted because of the bones fusing that way and not because of strength.  I just don't understand how it went unnoticed for the five and a half months that she was in the halo.  As a surgeon how do you NOT see that.  This poor baby already has enough problems but now her head is tilted a little and the only way to fix it would be to break her neck and refuse it.  There is still a possibility that it is a muscle problem but I don't feel that it is.  Her PT doesn't think so either.  I'm sorry to sound like I am whining but it's just not fair.

I think what both of these issues really boils down to is that I feel like Belli already has enough issues to deal with that have been caused by the Larsen's so why did God feel the need to add these little extras?  I mean we already have enough to worry about with her walking and her spinal problems and then her future dealing with these problems.  Why do we have to deal with not eating and not pooping too?  Why did God have to let her bones fuse crooked.  I mean that was something that could have been so easily prevented. 

I know that God is not really to blame and that this has all happened for reasons that I may never know.  But I will just be real honest with you about this.  I'm pissed.  I can deal with all the other problems just fine because they go along with the Larsen's Syndrome and I accepted those problems and moved on a long long time ago.  But the little added "bonuses"?  Nope.  I haven't accepted those and moved on.  Especially the problem with her spine.  Not when it could have been avoided.  Not when it SHOULD have been avoided.

But then I just try to remember how easy we really have it.  There are so many more problems that other children are facing that we are not.  So, I will just count my blessings and try to get over it and move on.


  1. I;m so sorry you're having to deal with these "little extras." I don't blame you about the tilt with her head...you're right it SHOULD have been noticed and avoided. And you're right...it's not fair...but it is what it is and you seem to have adapted quite well. It's natural to have days when you will be down, but it will pass....after all you have Belli to cheer you up! She is such an absolute DOLL! Her eyes and that smile...they just melt my heart. Hang in there...I'll say an extra prayer for you. Rita

  2. You have every right to feel upset, frustrated, and angry. It seems that all the little things have just added up, especially the preventable things.

    I'm so sorry Amanda. Have you ever tried vaseline for her constipation problem? Sounds crazy, but with a tiny bit of vaseline, roll it into a ball maybe coat it with sugar. But if you can get her to swallow it, it acts a laxative. We've used that on some of our hospice patients before and it worked like a charm.

    I'll be praying for you guys! She's so blessed to have mommy that cares so incredibly for her and loves her to the moon and back. Your doing an amazing job and are such a great advocate on her behalf! I'm proud of you!

  3. Amanda, you are not whining. You are being a mother, who is hurting for her child.

    I wish I could hug you...and I feel that you have every right to be angry. I am not one who usually pushes litigation...but, is this a malpractice issue? With her neck?

    I am so sorry for you and for Belli and the stuff that you are having to go through. I hope that you can get Belli's GI stuff on track, I wish I had wise words or helpful hints, but I do not.

    I just have listening ears...and I'll listen all you want!

    ((((YOU))) (Ooops, sorry...I forgot, you aren't a hugger...well, just pretend I'm Uncle Rocco or somethin'!) ;)

  4. I think that as a mom, your feelings are absolutely justified.

    I just wanted to let you know that I'm thinking about you. I hope you can get some answers to your questions.

  5. Well, you know we all get upset sometimes and need to vent about it. Know that Doug, Katy and I love you and Belli so much! These babies! I can't get mine to eat either. But thank God we do have the G-tube for night time feeding. And we have poop issues too. Miralax. Sometimes I think it works and at other times I am not so sure. Just know you are not alone. Nobody's issues are worse; just different. Scream and yell if you need to. Or call me and scream. I'll listen. I guess we will understand it better one day. Until then, we just do the best we can. Love you!

  6. I am so sorry girl! I hate that you and belli are having to go through this. Please know we are all here for you..even if we cant be there in person. Dont feel bad using this as an outlet to vent.. that is what we are here for!!

    Praying for you and belli!! ((YOU))

  7. You are completely justified in your emotions! I think we all deal with pent-up angst. Feeding problems are so emotional for me as well. I used to spend all day it seemed trying to coax a bite or two into my Peanut, just to have her throw it up. I know that our situation is a bit different, but I love our g-tube. I honestly have given up on oral feeds for now. We went through OT so much, with no accomplishment. I hope that your OT experience is much better and perhaps they have a few tricks up their sleeve that will help Bella!

    As for the neck issue, that just plain sucks. I agree, it seems like they should have noticed it. I can't imagine putting her through surgery to break her neck and realign it ... she's been through enough. You have every right to be angry about this!

    I hope that by a miracle the neck issue turns out to be muscle related. And I pray that the OT's can help Bella learn to enjoy eating.

    As for the poop - we have those issues as well. Miralax daily and still no middle ground. We are either constipated or poop endlessly. Ugh, I hate poop!

  8. Just keep in mind that if she is not eating then she will not have anything to poop out. Once you can get her to eat something then worry about pooping. If she is eating and still not pooping then you have a problem. Miralax is really the only thing peds recommends for that. Laxatives will make her scared to poop cause they hurt. Good luck.

  9. I just want you to know that every mother out here can relate to your feelings on a very deep and personal level. Even those of us with children who do not have special needs go through situations where we find ourselves questioning decisions and worrying about our child's future.

    I cannot tell you how much your (and Belli's) story has made me feel so encouraged and at ease...that if you and Belli can make it through days and days of her being confined to a hospital room unable to move while in traction, then I can make it through the stomach virus that lasts 14 days or the occasional illness and pediatrician visits...

    Its all about being a mom, and you my dear are doing a fabulous job.