Update!

Wishing I had more to say, besides the same old thing. All tests are negative, but no more answers or ways to comfort her. All her biopsies were normal, no Celiac, no parasites. Did a test to check her Thyroid on Thursday, waiting on those results.

I told Steve on Tuesday night, when she was crying at 11:00 at night. Just once, I wish she would have a episode where it is terrible, so I could just take her into the doctor and say, look at her, see what happens when the pain is so severe. May video tape it once just to show them what is going on.

Weight is holding on, she is at 101 this week, we are trying to not live by the scale, trying to just weigh her on Sunday.

Wish I had more news or could be more positive, right now we are very frustrated. She is tried of tests and we are too. It seems we keep running tests and get no where. One of these times we will hit on the right thing and hopefully find the answers to all this.

Have a great week, thanks for your continued prayers and support.

We survived yesterday!

I have to say Michaela was great. Tears while they were putting her IV in but otherwise she did good.

The scope didn't show anything that really stuck out at her. She says she has a little gastritis in her stomach. WebMD describes it this way:

Gastritis is an inflammation, irritation, or erosion of the lining of the stomach. It can occur suddenly (acute) or gradually (chronic).

We are awaiting biopsy results to let us know where we go from here. Still looking at Celiac also. I so don't like waiting, I want answers now. This constant weight loss is going to drive, her and us crazy.

Thank you all for your love and support, keep the prayer coming, hoping for answers soon.

Love to all.

Got her blood test results! :(

So they called today with her blood test results, everything tested fine, negative for Celiac, I called them back to talk see if that meant we were doing the colonscopy, they said no. Also told me you can test negative for Celiac and they will find it when they do the scope and biopsy.

Not what I wanted to hear. I just want answers, and they are not coming as fast as I wish. Having a very hard time getting her to eat much and pushing her to intake calories is sometimes, harder than watching her when she is in pain. Anyone with high calorie drinks or snacks, let me know. Everything we had tried she isn't going for.

Thanks for all the prayers, keep them coming, the answer is out there, just need to find it.

Love to all.
Lisa

It's Celiac Disease

Ok, so I was guessing on how it was spelled, and several people have asked if it is with a "c" and it is:

Celiac disease is a digestive disease that damages the small intestine and interferes with absorption of nutrients from food. People who have celiac disease cannot tolerate gluten, a protein in wheat, rye, and barley. Gluten is found mainly in foods but may also be found in everyday products such as medicines, vitamins, and lip balms.

The only treatment for celiac disease is a gluten-free diet. For most people, following this diet will stop symptoms, heal existing intestinal damage, and prevent further damage. Improvement begins within days of starting the diet. The small intestine usually heals in 3 to 6 months in children but may take several years in adults. A healed intestine means a person now has villi that can absorb nutrients from food into the bloodstream. To stay well, people with celiac disease must avoid gluten for the rest of their lives
(taken from NIH Publication No. 08–4269 September 2008)

Sorry, I hadn't been out on the web to research much yet. I am trying to keep things low key, Michaela is getting very scared and nervous about having the procedure done. I think she is more scared about the IV than anything. Continue with your prayers they all are appreciated.

Love to all.

Update!

We took Michaela yesterday to Boys Town Research Hospital to see a pediatric GI specialist. We saw a wonderful PA, she took alot of time asking questions, reviewing what had been sent to them by our pediatrician.

Her feeling is it is not gastrointestinal. She believes her intestines are fine, her concern it if she is allergic to gluten or wheat. She had blood drawn to check for Sylliac Disease, also wanted a full panel to check her other counts. The reason she is leaning more toward this is, there is something in your blood when you are allergic things, didn't know this, but hers has been elevated every time they have drawn her blood.

The doctors biggest concern, like ours, is her weight. She was up to 102 yesterday at the office, Hallelujah, but has been floating around 100 or lower at times. She wanted us to push calories, Milk Shakes with real ice cream, Vitamin D milk, Carnation instant breakfast, pediasure. She refuses to even try pediasure. So we will try the others.

Once the lab tests are back we will go back, scheduled on the 18Th of January, for an endoscopy, where they will look at her digestive track and take a few biopsies, Dr. Prestridge will do these procedures. She will have this regardless of what the blood tests show. She wants the blood test back before the procedure, because there is a chance they will have to do a colonoscopy too, but she really does not think it will be necessary.

So for now we wait and treat symptoms, which is the hardest thing for a mom. When she is really hurting it is terrible. She cries and cries and can not get the comfortable.

Please continue to pray for guidance for the doctors that they may find answers, for Michaela as she must endure her pain and the fear of the procedures. Also, I ask prayers for Steve and myself as we are both handling all this in different ways.

Thank you all for your love and support we appreciate it.

Love to all!

Michaela's 13th Birthday Party

Ok so I am a little crazy but what can I say. When Michaela asked if she could have a party with 16 girls I said, yes. I must have been very tired or I think I was just thinking party and they would go home. Well that changed into a sleep over. Lucky for me, only 11 showed up. It is a good group of girls, just a few problems with not getting along. But that is to be expected with 11 girls. Right?

They have ate and drank, not sure how much sugar they have had, don't think I want to know. And are playing games, Wii, etc. in my mom's basement. Oh yeah, thanks mom for letting us invade your house.

Not much else to report.

Keep Miss Michaela in your prayers as we will be traveling to Boystown Research Hospital on Tuesday to see a Pediatric GI specialist. We are going to get to the bottom of this some how some way.

Love to all.