Wrapping up 2008...

The past few days we have been busy with finishing up Christmas celebrations. Here we are on the 7th day of Christmas, reflecting back on this year. 2008 has been good. Yes, hospital stays, a job lost, but regained health and a new career path have come from those negatives.

Shelby's still seems to be on the upswing from her bout of Shigella. She just had labs done yesterday for Dr. Lang\man (bone doctor) and they look pretty good. She has been having some hand and foot pain and her allergies are nuts, but managable. Dr. Langman is looking into the foot and hand pain and she'll be having allergy testing in the next week.

Scott will start classes at RVC on January 12th towards his nursing degree. Mid-March he'll start his CNA classes. He has not taken college classes for 20 years - this is a huge step! I know he will be a fantastic student and an excellent nurse! I am so proud of him! He is also taking on one of the biggest challenges he's ever faced - quitting smoking! He has smoked for 25 years and is giving (himself and) his daughters the gift of quitting. Part of the girls' Christmas presents was to upgrade our cable so that they have the Disney channel again. The money we will spend on that upgrade every month is coming from Scott not spending that money on cigarettes. I think this is a very generous and selfless gift he is giving. He has been taking Chantix for a week now and tomorrow is his first day to not smoke. Please send positive vibes his way.

Monday we went to Chicago to take the girls to the American Girl Store. It was a great experience! We took the train/el for the first time and just had an amazing time! We also met friends, Jay and Kathleen, for supper. It was more than the girls imagined!

Visit to American Girl Store

The next morning Shelby had a DEXA scan and blood/urine tests for Dr. Langman. We then headed home and spent a few hours at IKEA. We are all tired, but very lucky because the girls did not wake up until 9:30 this morning!

Last Saturday we had Christmas with my side of the family. It was great fun, there was more than enough delicious food and it was nice to let all the little ones play together. Unfortunately, my Mom caught the cold that is circulating our house so she wasn't feeling the greatest, but I think she still enjoyed the festivities.

Hardwick Xmas 2008

May you all have a wonderful and blessed 2009!

Christmas Morning Chaos

Christmas 2008 (unedited)

Merry Christmas!

I hope this finds everyone having a wonderful Christmas! I just wanted to share some beautiful pictures of the girls taken lately. They are snuggled in bed with Grandma Nea and soooo excited about seeing what Santa brings. Riley did come out, though, after being tucked in, very worried (to the point of crying) about the people who wouldn't get gifts - who have worked hard, but still did not get what they "deserved." She talked about Shelby deserving more than her...it broke our hearts. We reminded her how hard she works at school, how wonderful and helpful she is in our family and how we know its hard on her when Shelby is in the hospital. She DID deserve all she would be getting and we did not want her thinking for a moment that she shouldn't be getting gifts. This thinking was brought about from the message during church during the puppet skit. Poor kid...what a big heart. She was asking, "but what can I do to help those people?'' We talked about ways that she can help and she had a good cry. She's finally asleep. I love her so much.

Please pray for Emerson

You can link to her mom's journal in my right side column. The name of the blog is "Journal." She is very, very, very sick and may possibly have a perforated bowel. Surgery would be necessary, but her chances of surviving that are very slim. PLEASE PRAY FOR THIS FAMILY. Thank you.

Shelby on the news!

This morning Shelby, my Dad and I had breakfast at Rockford Memorial Hospital. I was asked to speak giving a parent's perspective on the wonderful toys that their playroom has. I was more than willing to help out as this was their annual toy drive breakfast and it was an opportunity to show the donors an actual child who has benefited the toys, activities and games several times. My speech went well (sigh of relief) and Shelby was treated like royalty. Here is a small clip of her on one our our local news stations. She's the cutie-pie in the pink dress!. Two stations interviewed her, but I can only find the clip on the one. Enjoy!

Avery's 1st time playing in the snow

Avery's 1st time playing in the snow

Its better when you win it!

You know that catchy phrase from the eBay commercials? Yup, that's me. While I am busy eBaying (buying and selling) this is one of my Craigslist finds. I'm all for gently used quality items. This is a Hanna Andersson snowsuit and hat. How cute is this? Scott thinks its obnoxious, but that doesn't matter because I'm the one doing the shopping. Just wanted to share how cute she is!

Then she stopped to pose for me...check out the smile!

We will not miss this child in the snow! :)

Shelby is doing o.k. She has been to school all day every day this week. Whoohoo!

HAPPY HOLIDAYS!!!

Send your own ElfYourself eCards

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!!!!!!!!

Avery's cold, Shelby's itching & Riley's...she's just fine!

Avery caught big sis Riley's cold. She's been grumpy, not eating that well and just generally not feeling well. Her nose is a bit runny and she has a cough. Yesterday, after her nap, she had a fever, but nothing that Tylenol didn't help. Tonight Scott checked on her and told me she felt really hot. I snuck in there with the thermometer and her temp was 102. I scooped her up and we gave her some Tylenol. We undressed her and gave her cold water to drink. Now, about an hour later she's around 100. She' acting o.k.; in fact, a bit too well for being up so late...hmmm.

Shelby is dealing with the itching that can come with liver disease. She's had it before and its taken new and larger doses of medication to control. Once again her medication has been upped and, hopefully, we don't have to add another one to the line-up. Cooling lotion spray and Benadryl have been a bit helpful, too. I've read that this type of itching is "the itch that you can never scratch." That's how Shelby describes it. She says that when she scratches, it doesn't take the itchies away. Fragrance-free, hypoallergenic, bathing every other day, etc. We know all the tricks for helping her out, but, unfortunately, they don't always work.

Riley is doing great! She wrote a poem for her Papa (you'll love it Dad!) and wants to try out for the school variety show. She will be Miley Cyrus tomorrow for trick-or-treating and Shelby will be Hannah Montana. Avery will be a lil' pumpkin (if she's feeling better).

Well, that's all for now. Time to try to settle Avery back down. HAPPY HALLOWEEN!

????????

So, things with Shelby have been going pretty well. But, Saturday afternoon when I came home from work she looked awful. She said she felt awful, but nowhere specific. She said she was o.k. enough to go to the pumpkin patch with me and Riley. We went; we had fun; she seemed alright. Then we got home and she wanted to just rest. I took her temp and it was in the 100-degree range. We called the on-call GI (Dr. Sheila) and she said she would do a direct admit. We were really torn on taking her in. She said she was hungry and ate some supper. Then she showered and her temp seemed to come down a bit, but before bed she looked like a ghost. We still waited on taking her in. She slept fine.

She woke up today and ran a really low-grade temp, but ate great and played up a storm. Again we decided to hold off on doing anything. She's excited at the thought of going back to school tomorrow. Let's pray that we made the right decision to not have her looked at and that she has a GREAT day tomorrow.

Avery is hive-free, but she' s also now on Zyrtec 2 times a day and not having anything with (cow) milk in it. She seems to have caught Riley's cold, but isn't coughing as much as she was. Let's hope that stays that way, too.

Here's to a calm, calm week. We need one.

Never a Dull Moment

First of all, let me say that Shelby is improving. The diarrhea is slowing down, her spunk is back, but her color is weird. Not jaundice, not pale, just ick. Her stool culture from Sunday night came back negative for Shigella - Yea! And...nothing new grew (thanks for the "poop check" voice mail yesterday Moreena. What would us Liver Moms do without each other?!?! Hope your visit with Fabulous Frankie was wonderful!) She will go back to school when she has had "normal" BM's for 24 hours. She is currently pretending she is a dog named Sparkles and playing with Avery. She wants a puppy so very badly.

Thank you to everyone who has prayed for Shelby, e-mailed me, left messages on here, sent things in the mail (Lisa, your gift is awesome and very, very thoughtful!) and taken the time to ask how Shelby is doing. All is appreciated and helps us remember that no matter what we are facing in our lives, there are others there to hold us up.

So now for the new development...Avery broke out in hives yesterday. She was really crabby yesterday morning and when I unzipped her pj's, BOOM!, there they were. She has made the switch from her hypoallergenic formula to soy milk quite well. In fact, its been about a month now that she's just been on soy milk. But, last week we started slowly giving her foods with milk in them (baby goldfish crackers, to be exact). Now is that causing the hives - who knows! The Pediatrician wants her to take Zyrtec twice a day to keep them under control. They are by no means Shelby hives (which were full body, bad, bad, bad), but there none-the-less. We're keeping a close eye on her and, of course, have discontinued the "foods with milk in them" experiment.

These girls sure keep me on my toes, but, man-o-man do I love them!

HOME!

Yes, that's right. We are home once again. The consensus was that the bleeding was from the Shigella. She's on oral antibiotics and getting her spunk back. Now we need to work on her appetite. Its good to be home.

Monday

11:27 a.m.
Here's the plan. The bleeding has stopped on its own as of now. She'll stay in tonight, labs will be re-drawn in the morning and we'll see how those & she look at that point. They know we've been bouncing back and forth so they're not eager to let her go until we have some answers or at least see her on the definite upswing. She looks pretty good, just wiped out. Its been a long week for her; for us all. Still, I am very thankful that she can receive her care here in Rockford, only blocks from our home and with family nearby to help with Riley & Avery. It could be a lot worse, but isn't. Thank you God.

Back in the ER

7:24 p.m.
Shelby began having rectal bleeding today. This can come with Shigella, but not as you're getting better from it. I've talked a couple of times with the on-call GI and he suggested she get looked at. No fever, but only acting so-so. I'm sure labs and an IV are in her near future. She looks a bit pale and her tummy is still HUGE. I'll share details as I get them.
10:10 p.m.
IV's in, fluids being run, more bloody poop. Labs don't look horrible, though. She has the doctors mystified. I'm sure we're headed up to the Peds Unit for overnight. I'll do one last update for today in a bit.
12:41 a.m. (Technically, Monday, I know)
In her room on the Peds Unit. IV fluids and antibiotics running...we'll see what tomorrow brings. She's on a clear liquid diet and NOT happy about it. When you're hungry popsicles, ice chips and juice just don't cut it. I feel so bad for her. Her IV is now the 3rd little dot on her arm. They're all lined up in a row. Its a great vein and a great spot so that she can mostly still use her left hand, but, poor little arm. Her right arm has bruises from blood draws....ah...we just want our little girl better. Please pray for that. Thank you.

(I just can't think of a title today)

1:40 p.m.
So...Shelby slept great once she fell asleep at Midnight! Her wonderful nurse Heather managed to sneak in this morning and draw her labs off her IV without waking her - go Heather! I wonder what her plan was if Shelby caught her...Anyway, it was very nice that her little bruised arms didn't have to get another needle stuck in them today. Labs are o.k.; of course her ANC took a nosedive, but, hey, we're used to that now. We are just waiting on the GI on-call (not our beloved Dr. Deutsch) to decide what the game plan is. She is less yellow today, eating some and drinking a bit, but the diarrhea just keeps on comin' and comin'.....Scott is with her right now and I'm home with Baby A so she can nap. Grammie & Papa are awesome and she loves them so much, but she needed some Mommy & Daddy time. I don't know who was more excited to see each other this morning, Avery or me?!?! I'm going to try to do laundry and general keep-your-house-from-looking-like-a-bomb-went-off stuff. I'll let you know when we know what's going on. Please pray that she gets over this quickly!
8:32 p.m.
Home. Discharged. Broke out of jail again. On a different antibiotic now that is supposed to be more sensitive to Shigella. But, if she has a temp again or is acting like she was yesterday, back to the ER we go. Tonight, as she was getting undressed for her bath, I noticed that her tummy is HUGE. I measured it in a couple of spots. We'll see what it measures tomorrow. Please, prayers for no re-admits. Thank you.

What will today bring?

1:25 p.m.
Waiting. I hate doing that. I'm waiting to hear from Dr. Deutsch. Shelby woke up today with a fever, just wanting to lay around and tummy pain so bad she would cry out when it would hurt. Is it just the Shigella running its course? I don't know. She hasn't eaten, nor had much to drink. She is working on some ice chips right now at least. I'm worried about dehydration from all the poopin' she's been doin'. O.k., so I had to make that sound a little funny; I have to be entertained somehow while I WAIT. She looks more yellow than Sunday, too. I'm waiting...
2:59 p.m.
I waited and heard back from my very most favorite nurse Karin. We're in the ER right now getting labs done and checking for dehydration. She's still just laying there. NOT my energetic 6 1/2-year-old that was driving me nuts yesterday. I'd give anything for her to be driving me nuts right now instead of waiting for a nurse to come and stick a needle in her arm.
5:20 p.m.
We wait. Labs have been drawn, fluids are pumping in her, Disney Channel is on. It is a very noisy, not in a good way, ER tonight. Screaming adults, crying babies - we have the TV cranked to try to drown out the noise. She still has a fever, but is eating ice chips.
6:43 p.m.
We wait...for a room upstairs. She's going to be admitted overnight for hydration and "fine-tuning." Her bili is up even more than Sunday - Mommy's instinct was right! Its at 4 now. Her ANC is normal and her WBC is up - normal, but elevated for her - due to the bacteria. Dr. Deutsch came in and poked around on her belly and said its the darn Shigella, but that getting fluids and IV antibiotics will be good for her.
11:00 p.m.
Finally we are all settled into our room. We have our wonderful nurse, Heather, who said, as Shelby was being discharged "I won't see you because I don't work again until Friday." Ta-da, we're here! The dry-erase board in Shelby's room says "Welcome Back!" More blood had to be drawn for cultures as they did not take enough in the ER and more stool samples collected. Her "bands" (part of her blood cells) are up and that isn't good. They'll draw more blood in the morning and are checking to make sure a secondary infection hasn't popped up. Sigh...she is perkier with the fluids running, though.:)
Last update for tonight...

Goodbye earth-friendly cleaning...see you in a while

Something actually grew (for once) out of Shelby's cultures. Her stool culture came back positive for Shigella. YUCK!!! Its probably what we've all been dealing with for the past couple of weeks now. Scott & I are getting tested tomorrow as we're having minor symptoms still.

As for my title, I know and believe that my natural cleaning methods have been doing a good job and Shelby (or whichever one of us) picked this up somewhere out THERE, you know in the great big world, but the Mommy part of me has kicked in and said "KILL IT ALL. ALL THE BUGS. KILL THEM WITH BLEACH!!!!!!!!" So, I am. The stored leftover bleach has been brought out; I purchased clorox wipes and bleach-containing toliet bowl cleaner. My beautifully grown out fingernails have been hacked off. I don't want anywhere for those germs to hang out. I'm on the hunt tonight...the hunt for those invisible germs that made my girl sick. Wish me luck...

HOME

Avery and I just brought Shelby and Daddy home. What did she have? Who knows. She is on "house arrest" for 2 days and labs will be repeated. As long as she keeps getting better, we'll just chalk it up to a virus. She will be on antibiotics for 8 days to make sure to kick anything that could or might be brewing.

THANK YOU FOR THE PRAYERS.

A Sister's Love

So I finally got around to unloading my memory card from my camera. Check out these awesome pictures. This is how we found Riley & Shelby sleeping one night not too long ago. Riley is watching over Shelby, even in her sleep. So sweet.

Day 1 Inpatient

Despite perking up last night and finding new energy, Shelby did fall asleep before midnight. Her fever broke and she did great throughout the night getting her IV flushed (she hates that) and hooked up. She also did FANTASTIC at her 7:15 a.m. blood draw; from her arm, NOT her IV. Her choice. She would much rather only have things going in her IV, NOT coming out. Her tummy hurts quite a bit today and it is a struggle to get her to eat. She is now on neutropenic precaution as her ANC is now below 1000 - in the 800's, actually. Daddy has spent all day with her because I had to take Avery for a GI check-up (she still has GERD) and then I had a doctor's appointment (dx.=tension headaches and hives from, you guessed it, stress!) and I got my flu shot. It hurt a lot - I'm a wimp so don't tell my extra brave strong kid - she'll make fun of me! Anyway....Scott is staying with her tonight, too, as Avery is home and he can't be left alone with her overnight - you know, that whole lifting her thing is still out of the question with his shoulder. Its killing me to be away from my Shel-belle while she's in Club Med and I miss her so much! Tomorrow a.m. they'll draw labs again and we'll go from there. We're hoping for liver numbers, particularly her biliruben, to improve so she can get sprung from there. Thanks for the prayers and please keep them coming.

Shelby in ER

1:35 p.m.
Right now I'm in the RMH ER with Shelby. She woke up this morning with tummy pain and a temp of 102. So we wait...please say some prayers for her. I'll update when I know more.
2:25 p.m.
Please pray for Emerson. Things were going so well for her and have taken a bad, bad turn. Shelby has given a urine sample and has her EMLA placed for her IV. Once they get that in labs will be done. She is feeling rotten.
3:17 p.m
IV is in and she is getting fluids. Now we wait for lab results.

6:17 p.m.
Shelby is being admitted. Her fever is still at 102 and her liver numbers are quite elevated. She is on Zosyn (IV antibiotic) and feels worse than when we got here.
8:15 p.m.
She's in her room all tucked under blankets as she's been shivering. Her temp is still hanging out around 101-102 despite the tylenol. She's having some diarrhea and is thirsty and hungry. She's been having ice chips and Daddy is bringing some brown rice from home for her to eat. She just keeps looking worse and worse. I have a feeling we (Scott and me) will both be spending the night with her. Avery and Riley are at Grammie's. Please say a prayer for peace for Riley as she gets so worried when her little sister gets sick. Thank you.
10:05 p.m.
A dose of Motrin was given to her and, wow, what a change we've seen. She's eaten some rice, a popsicle and some jello. She was telling knock-knock jokes to the hospitalist and being very charming. Her temp is now in the 99 range. Her tummy still hurts and they are culturing her stools for all sorts of fun stuff. They'll draw LFT's (liver function tests) in the morning and we'll go from there. Thank you for the prayers. Unless she gets worse, this will be my last update for the evening.

Moreena' Birthday present

Today is Moreena's birthday. Today her daughter is going to receive the ultimate gift - the Gift of Life. Annika got called for her 3rd liver transplant. Please pray for this sweet little girl and her family. She has endured so, so much. Once the surgery begins it could take up to 18 hours. Pray for the surgeons to have skillful hands, the nurses to be sharp and on top of things and for peace for Anni's parents as they wait. Also peace and prayers to the donor family as they made such an important and wonderful decision in their time of sorrow.

A Sister's Heart

The good 'ole stomach bug has hit our house this week. It started off with Shelby & Scott. I thought Shelby's could possibly be that we backed off on her Miralax and that Scott's was his pain meds giving him trouble. Wrong. I developed it yesterday afternoon and Avery woke up at 2 a.m. vomiting and proceeded to on-and-off (more on than off) for the next 4 1/2 hours. Then, today I got a call from the girls' school that Riley's stomach hurt. Fun. Avery is quite perky again, but very tired and not quite back to eating and drinking again. So far Riley has managed to keep everything in. Shelby is having trouble from backing off on her Miralax, but we think she also had a touch of it earlier this week. We are to up her dose again and get things a movin' more, if you know what I mean. If her on-and-off tummy pains don't subside in a couple weeks then we may have to start treating her lactose intolerance as a milk allergy. Fun again.

Anywhoo...Riley is so affected when Shelby is sick. She remembers many of Shelby's hospital stays and late or middle of the night trips to the ER. Shelby not feeling the slightest bit o.k. really upsets my Riley. Thank God she has an outlet for her feelings in writing. I hope that her writings prove to always be helpful and healing for her. This is her latest song since Shelby was not feeling well.

Shelby
When you're close and near
I want to shed a tear
Why was a child like you stuck with this?
I know you're in pain
The hospital's your game...
I miss you
I want you near
I miss you.

Speaking of children in pain and who have seen too much of hospital life...please pray for Annika. She is listed for her 3rd liver transplant. Pray that she receives her perfect gift soon.

What my girls do for fun

I wanted to write these things today, but I would really appreciate you going down to yesterday's blog entry and reading that, too. It contains VERY important information. Thank you!

I will do my best to type this exactly as Shelby wrote it. I'm a bit of a proof-reading nerd, so this is really hard to do, but part of the beauty of what you will read is in the way she sounds out her words to come up with their spellings. Enjoy!

Titl 1st Grade

Thar is a grad I rilly like it is 1st Grad! I love it becas I like the fun wrks I like the lunch it tast so good! That is wi I like 1st grad. Wen I feel alon that tells me to do a...fun wrck! I love 1st grad 1st grad is fun ya!

Isn't that awesome?!?! And I was worried about her starting with a new teacher this year. She loved Mrs. G so much, but Mrs. Schach is pretty cool in Shelby's eyes. I'm so happy for my little girl!

Now here is Miss Riley's latest creation. She was recently tested on her reading level at school. The guidelines are more rigorous than last year's testing, but she came out at a 7th/8th grade level! Wow! Now this is a song that Riley wrote because the Rockford schools are promoting "Pennies for Peace." Riley has really been taken by this movement; this song even has a dance routine. Soon I hope to post a video of her performing it.

Charity Song

Donate for Charity
Donate for Charity

Pennies, Quarters, Nickels and Dimes
I like to donate all the time.

(Reprise)

5, 6, 7, 8
Come on guys
Its not too late!

(P.S. Scott is doing much better. Physical therapy started last week (ouch), but overall things are progressing nicely. On the 6th he will be starting as a Program Instructor in the after school program where I work. Hopefully, unless a really, really, really, fantastically great can't-pass-up full-time job offer comes in, he will start at Rock Valley College as a full-time student in January. Very exciting!)

Erika said it best...

Erika, thank you so much for writing your blog entry on organ donation. I will shamelessly follow your lead and spread the message to my readers, too.

Please follow the link above and read my fellow LF Mom, Erika's, blog entry today. Many of us from LF (see link to the right) are mourning the loss of a beautiful baby boy, Gavin, who was 2 weeks shy of his 1st birthday. Monday night his life was cut short as he passed away waiting for a liver transplant. In honor of Gavin, please sign up to be an organ donor. In Illinois you must sign up on here; doing it when you get your drivers license does not cut it now. Illinois has first-person consent. When you sign up here, now, this is what is looked at at your time of death, not your drivers license. Please do this in memory of Gavin, Haley, Jayli and in honor of Annika, Shelby, Emerson, Natalie and many, many more. Please.

He hurts

I know he's all happy-smiley in the pictures I've posted, but that face has now turned into one that is in pain. Serious pain. His polar care machine broke down yesterday and by the time we figured it out the pain had gotten ahead of him. He also called the nurse to see if they would prescribe the stronger Norco for him. He is now on the strongest version there is of it and we have a new polar care machine, but is still hurting a lot. In fact, his surgeon called him this morning to check on him and said that if he doesn't have some relief by 4 or 5 this afternoon to call and he'll give him something stronger. He (the doctor) doesn't want to have to do that because stronger pain meds = higher rate of dependency, but Scott has to be able to rest so he can heal. The doctor also wasn't surprised he was in so much pain because he said he had to do a lot more to this shoulder than he had to do on the other one. My hunny is hurting and its killing me. Please say prayers for him to get some relief. Thanks!

As a follow-up on Avery & Riley. I did get them in to the Ped's office in the a.m. Riley does not have an ear infection, but swimmer's ear. Different type of treatment is needed for that so that is why she wasn't getting any relief from the antibiotics. Avery checked out great - just an off night for her. All 3 girls slept over at my parent's house last night so I could have a bit of a break. Good thing, too, as last night was really rough on Scott and I don't know how I would have dealt with children up in the night, too.

Also, please, please, please pray for our little friend Annika. She is very sick right now and the doctors don't know why.

He made it!

Finally....at 5 p.m. they came for him. Two-and-a-half hours later I was talking with the surgeon. All went well. He said that this shoulder was worse than the other. He needed to repair a small tear in his rotator cuff, his labrum, shave down the bone spur and do general tightening and clean-up of his whole shoulder. He came out of it well and HUNGRY. We were on our way home by 9:30 p.m. We crossed the street and I got him a pizza from Lino's. He was very happy. I got him home and settled only for Avery to start crying. It was a long, long, long, long, long night. Did I say long?!?!? Riley was then up because her ear hurt- she has an ear infection. Shelby stumbled out then. I sent her in to bed with Grandma Nea, then Riley headed there. Then Scott needed meds. I think I slept for about 2 hours then Avery was up again. Scott needed meds, again. Do you see a pattern here? I sure hope the pediatrician has an opening this morning because Riley & Avery are headed there this morning with me and a HUGE cuppa Joe! Talk to you later!

Waiting...

Here's the update on the girls I said I would do. Last weekend we were given tickets by Scott's friend, Jake, to see Vanessa Hudgens at On The Waterfront. They were 12th row center seats - perfect. It was a perfect day, too, not a cloud in the sky. The girls were beyond thrilled and had a fabulous time. Here are some picture of them at the concert.


We are here, but his surgeon is running behind. Maybe he'll get in around 4 p.m. We're just hanging out in his room. He's watching TV and I'm surfin' the net. We couldn't resist taking some pictures with the webcam.