Thanksgiving 2008

Hope your Thanksgiving was as wonderful as ours! Wonderful food and good company!

I know Scott's parents will enjoy these pictures the most!

"Whatcha talkin' bout Uncle Bruce?"

"How old are you Avery?"

Cranberries in "The Dish"

And...

...what's a holiday without Bruce or Scott getting their hands on the camera for a self-portrait?!?!

Riley & Avery DO exist still

Avery watching carefully over me while I checked my e-mail this morning

Riley, just put the book down and give me a smile!

So much of the focus on here has been on Shelby that I just wanted to let you know that Riley & Avery are doing fine. Riley has quite an adjustment to go through every time her sister is hospitalized. She always worries about her. Also, yesterday she found out that her friend Payton's Grandma, who is also Mom, passed away suddenly. Please keep this family in your prayers. Pat, Payton's Grandma, has brought her up to the hospital to visit Shelby before. I don't know what happened, but my heart aches for this family.

Avery is a snot-making factory on two fast legs! She is so funny when she's not being crabby. She already has a bit of I'll-do-it-myself in her. And, if she's going to do it herself she's going to do it right and if she can't then she's going to beat up whatever it is that won't work for her. Kinda funny, but she is turning into a bit of a toddler terror. This too she pass...

Enjoy the pictures!

(P.S. I should be hearing from Dr. Deutsch today on the x-ray and biopsy results. Her abdomen has gone down a few cm, but is still quite distended. She's doing well with it, though. She is a VERY resilent child!)

The same

Today her belly did not change. It mostly measured at 72.5 cm. Chicago was called; her local GI was called. An abdominal x-ray will be done in the morning.

Tonight I had the big girls' parent/teacher conferences. They both had amazing report cards and their teachers had wonderful things to say about them. I was thoroughly impressed (because I don't always see this in them at home) to hear that Riley is quite the problem-solver - all on her own - and Shelby is a very good role model to her classmates that need help with a work. We are so proud of them!

HOME

5:58 p.m.
Look at her abdomen! This kid hurts! She feels full and does not want to eat. The Gas-X has done squat for her so far. Any suggestions on how she can get this air moving?
1:45 p.m.
She's home. Her abdomen is still quite distended and painful, but we were instructed to give her Mylicon or Gas-X to help with that. She ate some lunch and had a dose of the medicine, then claimed her tummy hurt and fell asleep on the couch. I'm headed there, too. She had a hard time settling down last night; very restless so we didn't get to sleep until late.

A single tear...

10:18 p.m.
She's still getting out all that air from her colonoscopy, but doing alright. Her abdomen was looking good, but this evening has gotten quite large. Not sure why as, like I said, she's been passing a lot of air. Her nurse measured her abdomen and we'll keep an eye on it. Its really weird; even though its distended, her belly button has caved in and she can't play with it. Strange...

Here are some pictures from today's visit from her sisters and Papa and Grammie. She was feeling her best today then, but is now wimpering and just can't quite figure out what's bothering her. She needs rest.

10:50 a.m.
Other than the expected tummy pain and gas from having a colonoscopy Shelby is recovering from her tests just fine. She is now on her 2nd bowl of rice. She looks rough because her face is a bit swollen from the anesthesia, but is happily playing on the hospital's laptop. They have awesome ones with internet access (only o.k. for kid sites) and built-in games. They are from the Starlight Starbright Children's Foundation if anyone is looking for a great cause to give a donation.

Nothing looked abnormal on her tests - yea! But...we still don't have an answer for all these problems she's been having. She does have a grade 1-2 (very minor) varix and several that are so small they aren't even graded. He took biopsies and we'll see what those show. She has been taken off the IV antibiotics and we'll see what her body does. If she stays stable she'll go home tomorrow. Her WBC count is now back to her low "normal" but she does have some bandemia and her basophils are still elevated. Her protein, albumin, BUN, creatine, hemoglobin, and hematocrit all stink right now, but I think mine would, too, if I had just gone 2 days on a clear liquid diet only. We'll give those some time to improve. Thank you all for your prayers. Her sisters and Grammie are headed up for a short visit and then Shelby and I will take a snooze. She slept a bit better last night, but it was still midnight before I got her down. I'll update again later.

8:50 a.m.
is what I wiped from Shelby's face as she was breathing in her "sleep" medicine. She was so very brave - she was a perfect example of doing something even though every bit of her Being did not want to. She didn't fight; just some wimpers and that sad face. God I hate that my daughter has to go through this!

Please pray that all goes well. I kissed her on the forehead and told them to take care of my baby. Now we wait.

An update finally!

2:34 p.m.
After finishing getting settled in her room and seen by the doctor, Shelby fell asleep just before 4 a.m. Of course, that means that's when Scott & I went to sleep also. Thus, part of the reason for such a delay in posting. Serious brain fog set in this morning; I don't think I could have even remembered how to type. Then I kept dozing off while Shelby played Webkinz. Then I realized it was time for her tests, but no one had come to get her. I called the nurse and she said that the doctor and anesthesiologist were coming up to talk to me and it sounded like they were not going to do her tests. There was too much concern that it was too risky to put her under after she had spiked a 104+ temp last night and her WBC is high. So...I wasn't too happy about that, but do understand. She is on clear liquids (still) today and hopefully we can try the test tomorrow.

Miraculously (and mysteriously) after 4 1/2 hours of sleep, she woke this morning with a normal temp! Is whatever she has responding really well to the IV antibiotics? Or is it (fill in the blank)? Who knows?!?! More labs are to be redrawn and the anesthesiologist will look at her again later today to determine whether or not the scopes can be done tomorrow. She's here at least until Sunday morning because that will be 48 hours on the IV antibiotics and will have given time for her cultures to "cook."

As of last night she was not neutropenic so we don't have all those precautions with visitors, etc. If you'd like to visit Shelby please call my cell first to make sure she's not resting. She is resting now and I'm going to follow her lead. I'll update more later. Thank you everyone for your prayers!

The Prep Day

2:07 a.m. (Friday morning)
She's being admitted and started on IV antibiotics (Zosyn). Her GI will come and see her early in the morning. We are just waiting to be moved upstairs to a room. Scott is in the cafeteria getting something to eat; I'm next. We're beat. Shelby's sleeping soundly, but still burning up. Her little heart is racing so hard from her fever and she doesn't look good. Even the ER doc (who's known her since she was a baby) commented on how he has never seen her look like this. All the tests came back fine - liver functions are at their baseline. Scott & I are concerned b/c her WBC is 9.7 - that is normal, but Shelby's "normal" is below normal. So we think this is her body's level of infection. In all the labs I've recorded of hers, she's never, ever had a WBC count over 4 even when she had things like strep and pnuemonia. After her 1st Neupogen infusion it popped up to 6.48, but then settled back in her "normal" 2 range. Maybe last night's post about all that worry was for something.
12:36 a.m. (Friday morning)
They took her right back and the nurse and doctor came right in. She's had a chest x-ray, RSV and flu tests, labs drawn and an IV placed. They are running fluids on her and letting her have ice chips. What is this?!?!?! Please, no infections!
10:57 p.m.
PRAYERS PLEASE!!!
Her temp is 104.8. We are headed to the ER right now.
9:18 p.m.
Today at 11 a.m. Shelby had to start her prep for tomorrow's tests. Five oz. of Magnesium Citrate was downed with no problem! Popsicles and jello! "I wish I could eat like this every day!" Now, her tune has changed. Fifteen oz. of the stuff has been coaxed in her now and she is still not cleared out all the way. Not enough for her test. Her temp is 100.7 and she is asleep next to me right now. Do we wake her and give her more Mag Citrate or let her sleep? Her poor tummy hurts so bad and she is so peaceful now, its hard to imagine waking her. But to have her not prepared correctly for the test and have to do it again sometime - no way! More updates to come...

I should be asleep, but..

I just can't get myself to go lay in bed. Its 2 a.m. I just finished up on some work for ASAP, but I keep thinking of all the things my little booger has been through in the past 8 weeks and the test(s) she will be having Friday. By no means is she the first kid to have an endoscopy and colonoscopy, but she's my first kid to have to go through the latter of the tests....

Alright so that didn't last long sitting in the office. I was cold. Now I'm all snuggled in bed with my trusty laptop. So, if I do fall asleep and this post just seems to trail off into nowhere, you'll understand why. I have been known to fall asleep with my hands still on the keyboard.

Back to my worries...I hope all this worry is for nothing. But, the what-if's are still there. Today Shelby had a big canker sore/blister (I really don't know) just inside her lip. She claims she didn't bump her lip or bite herself. Not so unusual, but she also has developed a lump on the side of her nose. Again, she does not recall bumping her nose. Related? Who knows with this girl! I hope they're both gone in the morning and I can laugh at myself over this silliness. On the other hand I think "Gosh if they're still there, we should get it checked out because 'normal' never seems to be 'normal' with Shelby. So how am I going to fit in getting her to the Pediatrician's (with no vehicle in the morning - Scott has a dentist appointment and then goes to RVC to take his math test) before I have to start pouring Magnesium Citrate in her and she starts pooping up a storm? Oh yeah, and the crabby 19-month-old with a I-don't-feel-good-so-no-one-can-feel-good-cold gets to tag along." Now I have to stop myself. There are much bigger problems and worries than this. I just have to have faith that things will work out. I need to remind myself that my child is home with her family. My child was able to sneak in one more video tonight, taking advantage of snoozing parents. My child who's big focus now is being as kind as she can. My child. My daughter. We are so lucky that she has done this well in her fight against liver disease. I just want her to feel better. I'm glad Dr. D is doing these tests, but I don't want him to find anything bad. Its better to rule things out than let a sleeping dragon lie in someone like Shelby, but...the possibilities it brings to my brain!

Was anyone else sickened by the headline about Tony Romo paying for a homeless man's movie ticket? I mean, that was nice and all, but we should strive to do good things for others just because we are supposed to. Just because its right. I'm not blaming Tony Romo. I'm blaming the media. So what if he did that? Are you going to put me in the headlines just because I do something nice? O.k., now I've forgotten where this whole post was going. I'm sure Scott (who is snoring next to me - yes, he can sleep in bed again now 11 weeks post-op) is very grateful that I'm pouring out my worries here. I sometimes have woke him up to discuss something I think is very important and earth-shattering only to have him be pissed off that its the wee hours of the morning. Thank you blog readers, if there are any of you out there, for reading my ramblings. I know Someone hears me.

Riley's Awesome!

2:40 p.m. Update
All looks GREAT in liver-land! Her cyst has actually shrunk! It is still looking like the aftermath of Shigella, but she will still be having an endoscopy and colonoscopy on Friday in Rockford. We got to thank Dr. Superina for the AMAZING job he did on Annika and see several nurses that remember Shelby from when she was a wee tot tearing up the hallways. We will come back for a check-up in 6 months!

(This post is being dictated to me by Shelby)
Happy belated birthday Big Sis! You are awesome Sissy! I hope you like the Webkinz that I gave you for your birthday! I'm sorry for chewing the nose off of your Bear. HAPPY 9TH BIRTHDAY!!!!!!
Love,
Shelby

Happy Birthday My Beautiful, Smart Riley! Mommy loves you! I'm so proud of you - I hope you had a wonderful day!

Riley made a "9" out of her candles - that's why there are SO many!

Riley and all her pink presents

Riley and "her" Papa - she used to be able to fit in that lap!

Riley and her birthday cake at church

Today we are at liver clinic in Chicago for Shelby's abdominal ultrasound, labs and to see her Hepatologist. Hopefully soon we will find out the results. She did fantastic during the ultrasound and her lab draw - she rocks. She's feeling pretty good today, but during lunch her tummy hurt. I'll update when we have today's results.

Shelby's bowel looks good!

"Normal" is the read from her test. Praise God! What is the next step? Still try to control her tummy aches w/meds and go to Chicago on Tuesday for an abdominal ultraound and clinic. Thank you for the prayers.

I didn't sleep well last night worrying about Shelby's test, woke up early this morning, have been away from home all day (the test went up until time to go to work, was at work, then came home long enough to come in, kiss Shelby, cuddle Avery, then headed off w/Riley for a night of birthday shopping w/her friend Maddy). We just got home a few minutes ago. I'm tired, but want to let you know how her test turned out. She was an amazing trouper drinking the barium and earned herself her first Webkinz!

Goodnight all...

Shelby's saga continues...

Shelby's tummy pain has increased the past few days and loud gurgling sounds are coming from her abdomen. There is some concern that she might have a partial bowel obstruction. I just spoke w/the GI doctor around 4:45 p.m today and already an Upper GI w/small bowel follow-through is scheduled for 9 a.m. tomorrow morning. Please hold her in your prayers.

(P.S. Keep Riley in your thoughts, too. Saturday is her birthday and last year her sister spent it in the hospital. A repeat of last year? I hope not! Riley loves her Sissy and hates to see her in the hospital, but is VERY excited about her birthday and I would really hate for anything to get in the way of her celebrating. Thanks!)

Gettin' Things Done!

Before my morning coffee could even get my brain all the way awake and functioning, Dr. Deutsch's magnificent nurse, Karin, was on the phone. We had called the on-call GI yesterday with concerns of whether or not to take her to the ER to get checked out. We decided we were not going to take her in, but the message was relayed to Dr. Deutsch that we had called over the weekend. Karin said he has ordered an IV infusion of Neupogen, and abdominal ultrasound to be done in Chicago and stool tests to check for white blood cells and blood. Now that's what I'm talkin' about!!! That was what Scott and I wanted done except for a blood culture, too. When I mentioned that - no problem! So my Mom picked up Shelby from school and met me at the hospital for the infusion. Grammie was invited along because the Peds Unit was busy, but the PICU wasn't so they were going to do it there. Never having been in the ICU (THANK YOU GOD!) I wasn't sure about how much Shelby would see. Grammie was there to run interference and distraction. Things went really well and I took some pictures with my camera phone to send to Uncle Freddie. I swear they gave her something wonderful in that IV because she was really quite her old self today. Yes, there were complaints of tummy pain, but nothing that made me even break out the thermometer. I'm sooooo glad she got that infusion today because tomorrow we are going to Coco Keys for Riley's birthday. I have not been impressed with the cleanliness of that place so at least she's got some backing to fight off germs a bit better.

Avery's allergy testing came back....all negative! She was tested for milk, soy, wheat, gluten and corn. I'm not bustin' out the ice cream for her just yet, though. We still need to try to figure out what causes her hives. The Pediatrician has to review it and get back with us on what the next step might be. She will LOVE Coco Keys tomorrow. I don't see a nap in her schedule!

As I mentioned earlier, Riley is turning 9 on Saturday!!!!! She is thrilled about it and loves to keep reminding me of how old she is now. I like to keep reminding her of that when she complains when I ask her to do something! I know, "Mom, you are NO fun slapping all that reality back in my face!" She has the eye roll and stomp-off down perfect. Those pre-teen year are a comin'!

By the way, Annika is back at the Kohl's House. No rejection, just some tinkering with BP meds. Emerson opened her eyes today! It's been over a month now since she coded. Also, one of our favorite nurses at RMH just had her 1st baby. Baby Eden was born with congenital heart problems and had major heart surgery today. Please continue to lift up these children in your prayers.

Frustrated

I'm feeling like a lost Mama...one that cannot make her little girl's tummy stop hurting. One that cannot explain to her why her tummy keeps hurting. One that feels like all she feeds her kid is medicines. Shelby is now on 13 meds (22 doses) a day. I have made a spreadsheet so Scott, me and my Mom can keep track of who's given her what. She has been running temps in the 100.3-100.8 range for 2 weeks now. We took her to Dr. Deutsch this week and he said that the insult her gut took from the Shigella is giving her symptoms similiar to IBS that could last for 6 months-1 year! As for the low-grade temps, that could be from her being Neutropenic. She looks like a ghost some days and her iron levels are running low so we've upped that med. We've upped her med for itching. She's on a new med for the tummy pain. She doesn't feel good, then she feels good, then she doesn't feel good, and on and on. Her tummy is HUGE still and her veins on her abdomen are very prominent, but at least they're not bulging. This week this Mommy is going to get a bit demanding about some more answers. I want an abdominal ultrasound done in Chicago and a blood culture drawn. We have got to get to the bottom of this!

Avery is doing better cold-wise, but the past few days the spots on her face where her hives usually originate are growing. In fact, a new one popped up this afternoon! I can't wait to hear the results of her test.

Riley auditioned for her school's variety show by singing The Preamble from Schoolhouse Rock. Of course, she rocked. The show's date is January 15th if anyone wants to come. She's also been asked to be the lead female vocal for a classmate's rock band that is going to perform. Remember the movie School of Rock? The last song is going to made into a G-version, instead of PG, and they're going to sing that - too cool!

Wish us luck with Shelby and please pray for her health to improve.

Halloween

Our house all decked out for Halloween - Mr. Bones and the painted pumpkins.Hannah (Shelby) Montana & Miley (Riley) Cyrus.

Avery in her Pumpkin costume Tuesday night (when she was feeling much better).

About a month ago when I dug out all the Halloween stuff.

Shelby seems to have turned the corner (knock on wood, cross your finger and toes, say a prayer, etc.). Her itching has slowed down thanks to another 300 mg.'s of Ursodiol daily. I can't find any more Eucerin Itch-Relief spray around here, though. Can anyone get their hands on it? E-mail me please if you can.

Avery was taken to the Pediatrician's yesterday by Grammie (thank you!) because her fever kept coming and going. He said all looked o.k.; just something viral. She is not napping good, but sleeping o.k. in the night. We are having to go stick in her paci a few times, but not a big deal. She is very crabby, but does have her happy moments. Today, though, she broke out in hives on her face. I was at work, but Scott said the one on her nose was actually raised up. I'm really suspecting the soy. She was very crabby right before dinner so I sat with her and gave her some soymilk to drink. Shortly thereafter, little red spots appeared on her face and head. (You can see them on her scalp b/c her hair is so thin.) Monday I will take her for the RAST testing if she is feeling better. Poor baby.

Please take the time to visit Annika's blog! She is out of the hospital!!!!!!!!