I am Thankful...

1. Excitement about focusing on the things that I am so very grateful for

2. Hearing,"I love you mom" from my kids

3. The leaves changing to beautiful shades of red and orange

4. Friendships

5. Having really good medical coverage

6. My husband's job

7. My dog

8. My house becoming a home I am proud of

9. My church and pastor

10. Hearing my children laugh

11. New recipes

12. Learning Pinterest

13. Clean sheets

14. Fresh flowers

15. An ice cold Frappucino on a warm Fall day

16. My children's school

17. My sister and her beautiful family

18. Seeing Pikes Peak every morning

19. Dry roasted peanuts and candy corn

20. Good health

This week's info...

Emily had been on prednisone for a month to help calm down all the inflammation in her gut - and it sort of worked, but has since worn off. So she's on a stronger steroid starting today (Entocort) for about 2-4 weeks (yay...kids on 'roids are a real blast). Its typically used to treat adults who have Crohns disease, so hopefully it should work. If not, I'm going to start a collection for toilet paper because you seriously can't imagine how much that child uses in a month.

Should have the second AE test results back by her 5th bday in mid-October. I'm trying to be really positive but she's just not healthy right now and isn't feeling good at all. She's refusing to eat, is very pale and getting pretty lethargic. It worries me but we are doing all we can until the results come back. Sounds like the preferred treatment for AE is a chemotherapy drug, so that's at least better (I think??) than a bone marrow transplant. I'm still learning.

After a conversation with the GI doctor's office today, it appears she is leaning toward Emily having Crohns Disease. We need to wait to see how she handles this new drug for 2-4 weeks, and then we will likely be scheduling for her to have a repeat endoscopy and colonoscopy (and trust me, you haven't lived until you have had to do 'bowel prep' for a colonoscopy...). Her blood test results are not currently showing that she has measurable inflammation in her gut, but since her IBD 7 test results were questionable, she could be developing Crohns (meaning it is still in a microscopic stage).

Whether this Crohn's is in addition to or in lieu of the AE we still don't know.

Bone density tests for both girls came back perfect, so that was a big WHEW. Really didn't need that one to be bad, the treatment wasn't pretty.

Ally has strep, which means we get two quiet days at home...and for that I am most grateful!!

Quickie update

Today we went to pick up the order for Em to have the AE test repeated, zipped to the hospital and had the obligatory blood draw. I hate that she has to keep going through this, but we must get to the bottom of everything. Now we wait 4-6 weeks for results back from the Mayo Clinic. This is when I try not to lose my mind. : )

Over and out...

My poor, neglected blog...

It's been so long since I last updated. We've had so much going on and have been on our toes ever since.

Here is the ever-popular bullet list:

• As you know, Emily was diagnosed with celiac in April. Her GI doctor suggested that we may want to have Allyson tested as well, being that there is a link between siblings. So, we took Ally for her blood test, and I completely forgot all about it. A week later, the phone rings at 7:00am and it's the pediatrician calling with Allyson's results: they are very, very positive. I proceed to argue with her that n o, it's Emily's test results that were positive. She responds with, "but I'm calling about Ally." (insert sheepish face) "Ohhhh."

• Emily then has an endoscopy to confirm her celiac. It is rated a "Marsh Type 3a" on the celiac scale (the ratings are 1, 2, 3a, 3b, 3c, 4 (the worst)). She is ordered to start on a gluten-free diet immediately. Additionally, they drew blood for something called autoimmune enteropathy (AE). The blood test is sent to the Mayo Clinic to be tested.
• Ally has her endoscopy to confirm her celiac. Hers is rated "Marsh Type 3b." (seriously??). Ally is considered an asymptomatic celiac, in that she has no symptoms whatsoever of the disease, yet it has clearly caused immense damage to her small intestine. She is also ordered to go gluten-free post haste.
• Colby and I are tested for celiac and both of us couldn't be MORE negative. We are gluten-free at home, but pig out on all things gluten on date nights.
• Colby begins choking on various food items. One particular day he is eating a Snickers bar at work, chokes, and a coworker is forced to give him the Heimlich. His doctor orders an endoscopy to figure out what is going on and it is found that he has pretty severe GERD (gastroesophageal reflux disease). He's put on medication to get it under control and is doing better.
• We continue to wait for Emily's AE results...and wait...and wait...and wait. We are told finally that the machine has broken and that they are scrapping the test and starting over. It will be another 4 weeks before we know the answer.
• The phone call comes when I least expect it: Emily's AE test is back and it is positive. I proceed to remain calm through the entire conversation with the doctor, and hang up and have a nervous breakdown.

Here is a short version of what AE is:

Autoimmune enteropathy is a rare syndrome which, in children in its most severe form, causes severe life-threatening diarrhea and dehydration. It would seem that an immunological defect exists, which is caused by the non-functioning of regulatory T cells. Characteristic of this disorder are circulating auto-antibodies that cause destruction of the intestinal wall. Treatment options for this condition are immunosuppression and bone marrow transplantation.

• So, where we are today is this: we had to retest Em's celiac to see if it was back to a normal range (test results back today indicate it is a 6.2 - normal is 0-20). Since the AE test was done while Em still has a lot of gluten in her system, the positive test result (albeit a weak positive) could indicate that the disease was just stating it is present, but wasn't active yet. If we retest her AE now, the results will be accurate, as the celiac won't have a chance to mask it this time.
• Both kids are having bone density scans this Friday. Since they are kids, and we don't know how long their celiac has been active, it is important to get a good picture of bone density since untreated celiac means malabsorption. Ally has been growing like a weed, so I'm not terribly concerned about her, but Emily has grown maybe .25" since this time last year, which could indicate she's not getting near the vitamins and minerals she needs.

I'm going to do my best to keep updating now, as this also provides me with a journal to reference when I need it.

So much to be thankful for, yet entirely too much to be praying about as well. Finding out your child may have a terminal illness is like walking into a brick wall. It's numbing, it physically hurts your body to think about, and it consumes your every waking thought. I am doing my best to put on a happy face and create some semblance of normalcy in our home, but it's a lot of work! As always, I appreciate and covet your prayers.