Posted By Posting
Nov 09, 2008
engin117
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including engi.nowaira.net, engi@nowaira.net, Engi@nowaira.us, anything from anyone claiming to be Engi Nowaira online. Otherwise, I will be representing myself in person so that everyone will have opportunity to identify me in person.
My previous drivers license was also stolen. The new one has extra security features on it.
Vent-DH wants to cancel colonsocopy/endoscopy
Sorry for so much of a vent, I don't know who else I can talk with about this. I feel so frustrated. I am not so much anxious as I am determined. I just want her well. I want her to have more pain free days, and a better quality of life.

I don't enjoy the testing that we have had to put Meggy through and continue to have to put her through, but I know some of it is necessary.

DH wants to cancel the colonoscopy/endoscopy of which I am fine rescheduling, but I am not ready to cancel. For whatever reason I am feeling uncomfortable with that one.

But now, he wants to forget the testing for Russell Silver Syndrome and mitochondrial disorder. He also doesn't want me to set Meggy up another appt. with the neurologist or to take her to the ER again for the headaches. I understand he is scared, and that thus far they have been useless to us, but we can't just ignore her problems.

I understand that so far the hospital and doctor's have not been able to help her, and that most have only hurt her or ignored her needs, but someone has to care! There has to be a doctor out there that can help her! I won't give up on my daughter. I won't quit just because we have hit one brick wall right after another.

But now, I feel that I have 2x the battle. I have to beg and plead my case of why each test is necessary and how it will help or possibly help, and hope he will consent too.

I don't like or want any of the test either, but I can't stand by and watch her waste away because she might get better or might be worse off with doctors.

Nov 09, 2008
camile- twins with reflux
Thomas and Lucas_2
Engi, I think you are doing absolutely the right thing for Meggy. You are an awesome mom for that. I am sure it hurts you as much as your husband to see her go through all these tests, but you are doing them in search of answer, in search of something that could improve her well-being. As great as dads are, moms tend to be stronger and get things going. I am thinking of you and your family. Camile
Nov 09, 2008
mom2adriane&morgan
Adriane Reese 05/16/07; seemingly healthy when born; diagnosed with MSPI, severe Reflux, Apnea, Ashtma, Epilepsy, and severe food allergies(rice, corn, milk, soy, eggs, oats, wheat, beef, chicken, squash, pumpkin, avocado, etc.);On apnea monitor, seems to be tolerating RCF w/carbohydrate mixed in; on Zyrtec, Xopenex, Prevacid
I'm sorry you are having to deal with this on top of everything else. Fortunately, my dh has been great about things. At first he was like yours and wasn't sure that some of the things that were going on with A were as bad as I thought. Unfortnuately, it took a drastic event for him to trust that I knew what I was talking about and let me take control on what happens in her health care. I hope that it doesn't take that much to convince him.

You are doing a great job and should follow your instincts. -Amanda

Nov 09, 2008
michelle&aurora
Aurora born March 17, 2007
3 years, 8 months old
Weighs 25.8 lbs
8 lbs 11 oz at birth.
Recovered Chronic Projectile Vomiter
Prevacid Free since September 08
Egg allergy diagnosed Jan 26/09
Has a Pectus Excavatum
Has an Epipen
I'm sorry you are dealing with an uncertain dh. Unfortunately, I agree with A's mom, that it can take some time for the daddies to be convinced that sometimes testing is necessary, and that we do indeed know what we are talking about. Trust me, I've had the very same conversation with Rory's daddy about cancelling her endoscopy. It was non-negotiable. Stand your ground if you feel you must, but try to understand and acknowledge his feelings as well. We have been told over and over not to worry about Rory's weight, but when Mike saw Rory lose the pound in 4 days with a virus (the pound that took us 6 months to put on her), he realized that we DO have reason to be concerned. She lost this weight with no vomiting or diahrea and all it would take is a nasty flu virus to devastate her. He is MUCH MUCH more involved and understanding when it comes to her health. He understands my frustration with the doctors. Understands why I obsess. He is the one now wanting to fight for answers on her breathing. I hope it doesn't take something serious for your dh to understand where you are coming from. If nothing else, please relate to him that if you don't pinpoint a cause for some of her pain related issues, her allergies, her gi problems, her breathing, that at the very least he should be VERY concerned about her weight for the reasons I mention above. If Meggy gets an innocent flu virus, it could be much worse for her. The weight in itself needs attention with winter coming, let alone the more serious stuff, kwim??? I hope you can be supportive to one another. It is ever so important in such a stressful situation. HUGS
Nov 09, 2008
emibug
Kathryn, Pager Volunteer and mommy to Emily Mia 02/04/07. 3 years old with GERD. 30mg Prevacid and Pepcid AC. Mylanta needed for flares. Failed prilosec med switch. Tried and failed many med weans but GERD and pain are well controlled. Functional constipation. Reoccurring SBBO. Suspected IBD or autoimmune disease. Resolved issues: MSPI, CSID (acquired), Stage 2 kidney reflux, Chronic diarrhea.
Audrey Meadow 06/20/08. born 34/35 weeks. Still b/f and eats everything! ftt and chronic constipation.
michelle and i had pretty the same dh (so it seems over the web lol) but it took chris a long time to come around to the fact that emily was as sick as she was. i think he knew it all along but for guys it is just different for them to admit that they con not do anything about it. testing seems like a dead end to them. especially if there has been past testing that has come back negative for abnormalities.

i bet you have already done this but maybe you could sit down with him in a conflict free zone and ask him, why not? ask what he thinks and feels- don't put your opinions in to it, just listen (even though you are mommy and your vote matters more and your dd will get the c/e tests! at least that's how i felt)

I think that if you had to do one last test that the endo/colo would probably give you the best answers. jmo though. no one ever said it would be easy being an advocate for our kids. i think the toughest part about being a parent is doing what you think is right in tough situations you have little experience in. but that's why god gave us instinct and hope. you are a great mom and i know you have both, trust them *hugs*
Check with your
doctor first!