Prayers for others please

Dear Friends and Family,

Please add these people to your prayers.

My Aunt Angie and family - her father, Angelo, passed away unexpectedly after having surgery last week.

Ayanna, our little friend from Liver Families - what an ordeal they are going through. Please flood the heavens with prayers for this little girl.

Thank you so much.

Shelby's 8th Birthday

My Shelby turned 8. Eight, Eight, 8!!! Wow! I loved it when she asked to hear "her story." We talked about how fast she came into this world - 1 push, 1 pull (the doctor had me put my hands under her armpits and pull her out) and what a little peanut she was. I then had to get out the picture album - that was way back before we were digital (ha, ha)! Her birthday weekend started out Saturday morning with a visit to the Discovery Center for their "Bubble Festival." Shelby loves to blow bubbles with soap and her hands as the bubble wand when she washes her hands. We watched a live performance by Geoffrey Akins which was amazing! We then played with lots of bubbles. She had a ton of fun Saturday afternoon/night with a friend sleeping over. The party theme was "Monkeys." They played at Monkey Joe's, made sock monkey heads, had all sorts of little monkey trinkets in their goody baskets, ate chocolate covered bananas and had, of course, monkey bread for breakfast! They wore matching monkey nightgowns, too. Yesterday, the big girls and Daddy played at a few parks while Avery napped and Mommy got some much-needed housework done. For supper, Grammie, Papa and Grandma Marian came over for Subway - Shelby's choice. It was a great weekend.

Shelby's 8th Birthday

Happy 8th Birthday my beautiful Shelby!

CONGRATULATIONS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Scott received his acceptance letter into Nursing school yesterday!!!!!!!!!!! Yippee! Whohoo! He has worked so hard for this! We are so proud of him!

Watch for later in the day for Shelby birthday updates. Today she is 8!

Dr. Saps visit

This afternoon we met with Dr. Saps. He is a GI - yes Shelby already has a FANTASTIC one here in Rockford - but he specializes in motility issues and Irritable Bowel Syndrome. He does not think Shelby has either of those. What he does believe she has is functional pain. He does not believe it is from her liver disease, but believes that it is aggravated by her body not being in "balance" from her liver disease. Make sense? Does to me. Basically, her abdominal pain would probably still be there with or without liver disease, but it wouldn't be this bad. She is being put on 2 new medications. One is for the pain and one is to try to eradicate any "bad" bacteria in her gut. He's not so sure that she actually has a dairy allergy despite her RAST test results. If we can get her gut pain under control then, maybe, possibly we can re-introduce dairy into her diet. When Shelby heard this she exclaimed "You are the BEST doctor ever!" and ran and gave him a huge hug. Along with her medication for the pain will come cognitive therapy (back to our beloved Dr. Jill) and possibly hypnosis. I'll have to research that one. Dr. Saps said he didn't believe it when it first came out that hypnosis helped, but the research results are very impressive. Shelby has to have an EKG before she can start her medication and have a gastric emptying study done. Dr. Saps also agrees that Dr. Deutsch is a wonderful and smart GI and he can manage Shelby's care. We'll check in with Dr. Saps to let him know how things are going. Good visit. Good plan. Now, let's pray that it works!

Please consider supporting fellow "liver" Mom, Crystal as she runs to raise money for liver disease research. Thanks!

Some progress on the "new" med front

"The squeaky wheel gets the grease."

That is the approach I often have to take in dealing with Shelby's doctors and nurses. No, she isn't the sickest kid around, but she's my kid and she hurts, dammit! If they don't understand that it is a hard situation to deal with day-to-day, then I will *help* them understand by letting them know how much it is affecting my daughter's life. So, its been 6 days since clinic. No med has been prescribed - we haven't even been contacted about it. So yesterday we called...and this morning I called. Lo and behold, turns out Shelby has to see the GI in Chicago to get his input on what med she should be on...it was made out to sound much easier than that in clinic Tuesday. Because of our insurance, she can only be seen at the Lincoln Park location (main hospital, not suburb clinics) and they did not have an opening until JUNE. Yes, I said JUNE. Three...1, 2, 3...months away. NOT o.k. Shelby's liver nurse waved her magic wand and, voila, she has an appointment with Dr. Saps this Monday afternoon. Now that's what I'm talkin' about baby!

Tomorrow...5 days later....I'll get around to it eventually

Sorry to leave you all hanging there with the "I'll update tomorrow" line. Jeez! What kind of blogger am I?!?!? Shelby's check-up with Dr. Langman was good. Her bones look fabulous - "normal" - that's what we like! She'll have blood work done again in a year for him to make sure her levels are holding steady.

We are still waiting to hear on what med the GI's want to try her on. I think I'll be doing a "checking-on-the-progress-of-that-decision" phone call tomorrow. Dr. Mom & Dad (uh, me and Scott, that is) miscommunicated and just realized today that she has not had her Levsin (hyoscamine) since lunch time on Friday. Yikes! (That's the one she's currently on for tummy pain.) Since she still has such chronic pain I was thinking it was not working - wrong! She is supposed to have it 3 times a day and her little body was missing it tonight. We got her script filled today and got a dose in her tonight, but the pain had already set in. Poor kid had a tough time getting to sleep. Major guilt-ridden parents here. :-(

We've had a busy weekend taking a road-trip yesterday in the North Aurora and Wheaton 'burbs to pick up some loft beds for the big girls off of craigslist. We met "Aunt" Tony (Martin girls joke) for lunch and managed to shop a bit at an outlet mall. (Wish we could have seen you, "Uncle" Julie!) Last night and today were consumed by assembling the beds and the bedroom. I'm tired, but for some reason am up typing this update at 1:23 a.m.....hmmmm....better head to bed.

Tony, Me and Avery

Uncle Tony and his Nieces

Clinic news

So, Dr. Alonso agreed that gastritis can cause abdominal pain, but not the kind of gastritis caused by portal hypertension. She believes (is hoping?) that Shelby's abdominal pain is a motility issue that a new type of med will help. She is e-mailing a GI here in Chicago and Dr. Deutsch so they can work together deciding what med to put her on. We are to give it about 6 weeks. If we see no improvement after that time period, then transplant talks will start. It would have to be a living donor because she would be no where on the transplant list - not w/her type of complications. Jaundice, poor growth, bleeding - those issues would put her on the list, but not Shelby's issues. Dr. Alonso, though, feels that if we cannot get this pain under control, then Shelby's quality of life is being compromised (many, many, many weekly/daily trips to the nurse's office for tummy pain, laying in bed at home when her tummy hurts, not wanting to play when it hurts - a LOT of missed school) and, along w/her other side effects of liver disease, it is time to get her transplanted. She said Shelby's time is getting closer, no doubt, w/the severity of her portal hypertension. Dr. Alonso is very impressed w/Shelby's excellent growth & muscle tone. Some things we're starting to see in Shelby were evident early this evening as we took her to a "Family Jump Time" at Pump It Up here in Chicago. Shelby played (hard) for about 20 minutes then just looked like all her steam had been let out. She sat, was very quiet, and we needed to go out in the lobby and sit w/her for a while. We told her it was o.k. if she couldn't play any longer, but she just wanted to rest for round 2. And she did. She never needed that rest before; now she does. She also was very winded as we were walking outside later on the way to supper. These are little signs that her liver is crappy. No other word for it - it sucks. I just want my little girl to not have pain. Dr. Alonso did say that kids w/GI problems did have a lot of pain, but kids w/liver disease alone did not have pain, but very threatening complications. We'll see what this new med is and pray that it works.

We are at the Kohl's house for the night and will be going to see Dr. Langman in the morning. I'll update on that news tomorrow. Night.

Clinic tomorrow

Please keep Shelby in your prayers as she has "liver" clinic tomorrow. We have a lot to talk about with the doctors. We will be in clinic on Tuesday and then Wednesday morning we meet with Dr. Langman about her DEXA, blood and urine results to see if her osteoporosis is gone. He was not anticipating seeing any problems, so let's hope that's what he says.

(Oh, and by the way, tomorrow is my birthday and Shelby's little body seems to think that's time to get sick and hospitalized - at least that's what the past few years have been like. Please pray her little body ignores my birthday :-)