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.

Remember this?

Scott will be doing this again tomorrow, but with his right shoulder this time. He has a bone spur and a tear they will be fixing (and whatever else they might find wrong once they're in there). Recovery will be long, hard and painful once again, but the daily pain he is dealing with right now is no walk in the park either. It really helped to have his left shoulder done so now its time for this one. He is anxious knowing how much it will hurt afterwards. Please pray for peace for him and that the surgeon will have very skillful hands tomorrow.

I'm needing some prayers, too, as I'm not quite sure how I'm going to juggle having an almost 17-month-old and working 35 hours a week this time around while caring for him. Last time I was doing in-home daycare for one child. Now, things are a lot more hectic around here. I'll have help from our Moms, but I still need some more. If you're available a weekday from 3-6 and would like to come over and help, just give me a call!

The girls are enjoying being back at school. I'm assuming that I'll have internet access at the hospital tomorrow during his surgery so I'll update more on the fun things they've been doing lately then. By the way, his surgery is at 3 p.m. so send some extra good thoughts and prayers his way around then. Thanks!

Our little "reader"

Tomorrow her sisters start school again. I think she'll miss them. They've had a wonderful summer together and, as you can see by these pictures, they've modeled wonderful habits for her. She "reads" just like her big sissies do!

I must be getting lazy...or busy!

Shelby as Carolyn

Riley as Carolyn

On the big turtle at the Madison Zoo

So much for my big "Day after Great America" update! Well...they did have A LOT of fun! Riley was really into the water rides so they did several of those over and over again. She did ride a few roller coasters, but kept wanting to go back to the water rides. They both came home very exhausted from their fun day.

They are now registered for 1st and 3rd grades! Yikes! How did my girls get so old?!?! Riley saw her teacher, Mr. Wurth, and was just beaming....Shelby, on the other hand, isn't so sure about this switch to a new teacher. She has Mrs. Schach. I'm sure things will be fine. We are going to try to go visit her and the classroom this week. Hopefully that will ease some of Shelby's reservations.

We spent last Thursday in Chicago for a quick appointment with Shelby's Dr. Jill. Since we decided this was the day to go visit the Sears Tower we left Avery w/Grammie and Papa and took our 16-year-old babysitter, Carolyn, in w/us. The girls were thrilled to have Carolyn there (so were Scott & I!). She is awesome w/them (Carolyn, if you're reading this don't get a big head) and helped us out tremendously during the day. She had fun, too. Our first adventure was taking the "city bus" downtown instead of driving and attempting to park there. That was fun and the bus was much cleaner that I expected. Cool! I wish Rockford used public transportation more. Then we went to the Skydeck of Sears Tower only to be treated w/the Blue Angels practicing for Chicago's water and air show. Our pictures do not do justice to how great our view of them was. We then made the descent back down to earth (o.k., the elevator ride down) and walked to our friend Jay's apartment. We spent some time visiting there, grabbed dinner and then (literally) ran to catch the bus back to where we were parked. We even added to the adventure as I was purchasing some gDiaper inserts from a lady who lived north of where we were in Chicago. Yahoo maps got us there just fine and back on the Kennedy w/out too much stress! All-in-all it was a great, but long day! Carolyn entertained us on the way home by talking w/her friends on her cell then repeating the conversation to us. Let's just say that things were funny enough that I spit out my water I had just taken a drink of!!! It was crazy!

Hope everyone's summer is wrapping up good. We are taking the girls and 1 friend each to Magic Waters tomorrow to use up their last free tickets. The weather is supposed to be great!

Enjoy the pictures!

Off to Great America

These nuts are off to Six Flags Great America today. Riley earned a free ticket by reading several books at school this past spring. They are both so excited, but this Mommy is a little nervous to think of her little girl flying around on those big roller coasters. I'm sure she'll be fine....she's a dare devil when it comes to the rides at the fair. But she's just my baby....sigh...I'll update tomorrow on how their trip went.

Thank you

Thank you to the person(s) who anonymously paid for Shelby's week at Camp Winnebago. She is having a wonderful time! I wish I could thank you in person, but I pray that you will read my thanks on here. I was shocked when I called last week to pay to find out that her week was already paid in full. What a blessing to us right now as Scott's ex-employer put up a fight in Scott getting unemployment. Then he had the nerve to not even be available for the hearing! ARGGGGHHHH! What an a**hole! I digress...Shelby really is loving camp and I am praying hard and crossing my fingers and toes that she doesn't pick up any "bugs." Her last time at camp she caught Rota virus and spent about 3 days in the hospital.
Riley is just being Riley...just beautiful, smart and, truthfully, she exhausts me with her knowledge. I just can't seem to keep up. Scott took this picture of her a few weeks ago with his camera phone. Great, isn't it?!?! She's a little hottie! Yes, we are already worried about her pre-teen and teenage years. She's finding out things can be a bit boring when your sister is at camp. She's done it twice this year plus 2 weeks of 1/2 day camp. Shelby survived, she will, too. As long as there are books in the house, she'll be just fine.Here is Avery trying out her little chunky legs at walking. She's been taking several steps for a few weeks now, but still isn't sure about the whole walking thing. She is so wobbly and CUTE! Crawling is still her preferred mode of transportation and her dirty little legs can prove that! She's wearing a pair of sunglasses that were Riley's as a baby, handed down to Shelby and now Avery is sporting them. She had her 15-month check-up last week and weighs in just under 24 lbs. and is 30 1/4 in. tall. She was crabby on Friday and Saturday and running a temp between 100-102, but it turned out to not be much of anything at all. She still adores her sisters and is very fun to play with.

Just wanted to fill everyone in on our summer so far. Take care!

Fun in Lovington, family time at the children's museum & the girls

We had a great time in Lovington visiting with our family. We took the big girls to a parade about 15 minutes south of my uncle's farm in Sullivan, IL on Friday. Not much candy was gathered as we were at the end of the parade route, but we were next to an awesome park with the tallest slide I've ever seen. The girls loved it! And, to make it even better, there was a carnival that started up next to the park after the parade. How much better does it get?!?!?! Scott and the girls made sure that I got plenty dizzy on all the rides. That evening we watched the Lovington fireworks from my Uncle & Aunt's 4-season porch along with the rest of the family.

4th of July

The next day was spent at the farm just enjoying our family. The girls donned swimsuits at one point to play with water guns and run through the sprinkler. Riley, our fish, dunked her head in a bucket I think in a desperate attempt to swim!

Sunday we all had brunch together. After we laid Avery down for her nap, Scott, me, and the big girls headed to Decatur to the Children's Museum of Illinois. That was alot of fun!

Children's Museum of Illinois

Monday started out with a bad thunderstorm and water standing in the fields and across the roads around my uncle's farm. We headed towards Normal around 11 to meet up again with our friends, the Tiede's. The weather cleared enough for us to spend the afternoon at one of their city waterparks. Lots of fun was had there and I got a GREAT picture of the 4 big girls before we left. They are beautiful little girls!Riley, Annika, Shelby & Frankie

A stop in Normal

Isn't this picture amazing? Annika and Avery...the 2 "A" girls. Just taking a moment to hang out together. So sweet. I always look forward to talking with Annika. Such a sweet voice; and the way she says things. Anni had a slight limp from her heart cath she just had 2 days before. Her spirits were great, though. We talked about the flavor of anesthesia that she had and she told me how she had to take it easy for a few days. We stopped for a brief visit on our way to Lovington, IL for my side of the family's "Christmas in July." Normal is halfway between Rockford and Lovington. If all goes well we will be spending Monday at a waterpark in Normal with the Tiede's on the way back home.

More pictures of our visit and this weekend to come.....

The Puppies & splashin' baby

I thought I'd do a quick update since I have such cute pictures to show off. I have the luxury of being home alone w/Avery (she's napping, though) so I promised myself that if I mopped the kitchen floor I could have some computer time. Riley is at Totally Arts camp and then will be going to Coco Keys w/her Brownie troup and Shelby & Daddy are at Magic Waters.

Shelby got quite the treat on Wednesday to go w/Grandma Nea to see her neighbor's new puppies. Shelby is totally in love w/the mother dog and has been quite anxious to go see the 3 pups. They're only about 3 weeks old and Shelby got to hold all 3 of them! Enjoy the pictures! She had a wonderful time!

June fun

We purchased Rockford Park District pool passes this year for me & the big girls. Since Daddy is around right now, the 5 of us have gone twice this week to Sand Park Pool. Of course, Riley & Shelby spend their time in the big pool swimming under water, but Avery is really enjoying the fantastic kiddie area they have. I am appreciating the fact, too, that she isn't walking yet as I watched a mom w/a child a few months older than Avery chase her toddler around yesterday. Avery stays in one spot except when she decides to get adventurous and crawl a few feet.

I am almost done w/my paperwork for the afterschool program. One more to go! Yea! Then its play, play, play....I wish!

Hope your summer is coming along nicely, too. We like/appreciate being home & not in the hospital :) Thank you, again, for your prayers for Shelby. Take care!

Home! :-)

I just copied my entry from the Liver Families Forum....so those of you that read that, this will sound familiar!

We're home. This is the deal per Dr. Alonso (Chicago). Finish up the final 3 days of Zithromax. If this (fever about 102) should happen again and she isn't looking too bad then take her to the Pediatrician's, not ER. He will run CBC w/differential and CMP. If her ANC comes back under 250 then she will get a shot of broad-spectrum antibiotics that will cover her for 12-24 hrs. while blood/urine cultures "cook." That way she's covered w/antibiotic protection if they do grow anything. If she doesn't look good and has the fever and her LFT's are elevated, then she will be admitted for further observation/study. Each time her ANC drops below 250 Dr. Alonso will be notified. If it becomes a pattern, then weekly Nupogen injections will be given. They are giving her more leeway on the ANC level b/c her "normal" WBC is so low (2-3) to begin with. Right now we're just using good precautions in keeping her away from public places/sick people/extra good hand washing. This afternoon Avery woke up from her nap w/"The Cough" and now has a fever of 102...so it was something viral...let's hope it doesn't go around all 5 of us and then back to Shelby. Thanks for your info and prayers.

Night update: A dose of Tylenol has brought down Baby A's fever. She ate supper, had fun in her swing outside, had a tubby and is now sleeping. Let's hope her night is calm and restful.

I start a new job tomorrow. I still have my site coordinator position w/the after school program, but that is almost done for the summer. My new (2nd) part-time job will be as co-director of @ Centennial United Methodist church's Saturday Kids Club. I am looking forward to this as it is very part-time, there is back-up if Shelby (or Riley or Avery) is sick, and its working w/kids and in a very familiar church environment for me. Once I learn the ropes I will take Riley & Shelby with me as the program serves children ages Kindergarten-Sixth grade.

Thank you for the prayers for Shelby.

Admitted

Shelby & her teacher, Mrs. Giardono, on the last day of Kindergarten

Shelby was admitted the other night. She has no fever now, but has diarhhea and tummy pain when she coughs. I thought her cough was getting better, but last evening started to get worse again. We are mainly in here because her ANC is so low and no one is making a decision on what to do with her about it....a repeat of March....very frustrating. Don't be freaked out by the link for the ANC, it just gives a good description of what it is.

Labs were just drawn so, we'll see what those show. Her ANC when we came in Wednesday night was 805, yesterday it was 648, and soon we'll see what today's is. Its not liver issues that are keeping her in this time, its those low blood counts. Someone needs to figure this out. In March her ANC went from 700 down to 150 when she was sick. It took an injection of Nupogen to bring it back up....is that what is going to happen again? Its only a bandaid on top of the real problem (which no one has figured out what that is). Sorry to ramble....frustrated here. She's not really sick enough to be here, but there's enough going on for her to not be at home.

Riley ready to head to camp on "Crazy Hair" day

On to my other kids...Riley has enjoyed a week of Camp Winnebago. It is a day camp just north of Rockford. Today is her last day and they will be taking the kids to the Y to swim. Riley will be in heaven! She also will be exhausted from being on-the-go all week. Some R & R time will be in order for her.

Avery in her hot rod. Watch out, I'll run you over!

Avery, Avery, Avery....what a cute, happy chubby baby! We thought she was handling the shuffle from Daddy to Mommy to Grammie, but according to Daddy (who got to sleep at home last night) she was up on and off during the night. We'll have to make sure she has her nap in her crib today. It was just too exciting at Grammie's yesterday with cousin Katie there and all the ceiling fans for her to nap good. And she's so darn cute, who can resist a baby who wants to play instead of sleep?!?!?!?

And...to add just a bit more stress to this. Scott's ASSHOLE boss let him go May 29th. Just out of the blue...what an asshole. It is helpful to have Scott around and is nice to spend time with him, but he's lookin' for a job. Anybody know of anything?

I'll update more later.

Shelby in the ER

We are at the ER @ RMH w/Shelby right now. Her what-I-thought-was-an-allergy-cough now includes a fever of 102. She is acting so-so, but doesn't have much of an appetite. Prayers please that we go home tonight and are not admitted. I'll update when I can.