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.

Avery & The Red Cheeks

Avery has come down with Fifth's Disease, maybe. I took her to immediate care today because her slightly pink cheeks (as it started on Saturday evening) have turned into bright red shiny flaming red cheeks, little red dots all over her body and a hellacious diaper rash. The doctor today was really wishy-washy. I had to ask him to look in her throat and then he started to look at her ears, again. Duh. He didn't make me feel real confident in his diagnosis - oh, that's right we walked out without a diagnosis! He gave her a script for Zyrtec in case she's uncomfortable or in case its some type of allergic reaction and Nystatin for her bum. She's crabby, but has not run a fever at all. These pictures do not show how red her cheeks are; they're really quite bad. Her milk wean did not go well so she's back on Neocate, so we wonder if there are some problems there. We'll see how tonight goes and how she looks in the morning.
After writing such a wonderful post on Shelby her labs came back not so great. Nothing urgent, but concerning. I told the nurse that it was o.k. if they didn't get back to me until this week about the game plan. Let's just pray that they improve soon on their own.

Please hold Annika and her family and the Gesner family in your prayers. They sure need them.

The rest of the update

Liver clinic went so incredibly well. They (Drs. Whitington & Superina) are very, very impressed at how slow her liver disease is progressing and how smart, strong and generally just WELL that she is doing. She is growing by leaps and bounds (seriously, like 2 lbs. and 1 1/2 inches over the past 2 months). Yes, she has cirrhosis, a large spleen, obvious portal hypertension and that damn cyst, but she is doing great. They said come back in 1 YEAR!!! If Dr. Whitington had to estimate now when she would need her transplant, he thinks between ages 10 and 12! Wow! We are so thankful!

Mommy got her IKEA (quick) fix in on the way home and the 5 of us were very happy to be reunited last evening. Thanks to Grandmas Linnea & Coralee for splitting the Riley & Avery watching. Eight hours of clinics is no place for 3 little girls to hang out! Taking high-spirited Shelby is a handful enough!

By the way, Riley & Shelby have had head lice now for over a week. Today Grandma Coralee put a prescribed lice treatment on their head while I was at a meeting for work. I've sent them outside to play because their little heads stink so much. I can't wait for 6:30 tonight when it can be washed out. I'm not even reading up on this stuff because I know its bad, bad, but we can't seem to shake them with the regular treatments. I'm about ready to shave their heads! Let's hope this does the trick! I am sick of washing everything in hot water, vacuuming up a storm and picking nits out of their hair! GO AWAY LICE!!!

Please, as always, keep Shelby in your prayers. Let's keep her lifted up to God for continued good, stable health. Thank you so much.

Clinic Day

These pictures aren't too bad considering I took them from my web cam with a wiggly 6-year-old it was trying to focus on. Last night we came into Chicago for Cardiology and Hepatology clinic. We started at 8:30 a.m. with an EKG, then a full Echo and are now waiting to see the doctor. It is Noon.........Grrrrrr....Then we have 1:45 liver clinic that, I'm sure, promises to be just as long. We get great (but slow) care here, though. Shelby is being evaluated by Cardiology for Hepatopulmonary Syndrome and Pulmonary Hypertention.......Just saw the Cardiologist at 12:30. All looks perfect w/her ticker! No worries there unless we see a decline in liver function. We are to see her again in 2 years.

We had lunch at the cafeteria. Shelby likes it b/c they have chocolate SoyMilk - she's now on a lactose-free diet to try to help w/her tummy pain. So far, so good. Now we are in liver clinic waiting to be seen. Our appointment time was 1:45; it is now 2:47 and no one has seen her yet. We wait again....

Please pray for our friend Annika. She is currently inpatient here as she had a major bleed yesterday and was transported by ambulance here from Bloomington/Normal. I saw her this morning and she looks pretty good, but will be here for a while as the doctors try to figure out what's going on.


**Shelby is on a lactose-free diet and Avery is back to a milk-free diet. The milk challenge didn't go so well. She is now on Neocate Jr. She likes it, but it stinks up our kitchen!**

Cuteness

Cuteness

April is...

National Donate Life Month. Have you registered yourself as an organ donor since the law changed in January of 2007? Go here for more details. You have to re-register if you haven't yet. Please do....for Shelby, for her friends Annika, Natalie, and all the children at LiverFamilies. You know how we feel about organ donation. If you've known us since Shelby was born, you know that we pray and hope a liver is available for her when the time comes for her to need it. Wouldn't you want the same for your child, too? We've known all too many families whose children have not gotten their gift of life....all too many and its something we can prevent. Be a Hero...Be an Organ Donor.

Happy 1st Birthday Avery Elizabeth!!!

Our baby, 1-year-old TODAY!!! These past 12 months have flown by! She is such a joy in our family. We all love her so much! Thank you, Avery, for coming into our lives! Happy 1st Birthday, my little peanut! You overcame so much in your first few months and have just blossomed since.
WE LOVE YOU!

Remembering a year ago...

Avery's Birthday Party

Goin' Green

O.k., w/my new laptop in hand (actually on my lap, usually w/me falling asleep w/it there) I have been researching ways our family can become more green. We already recycle, shred our paper & give it to my parents to use in their garden (or we put it out in the recycling), always do full loads of laundry, try to limit our shower lengths (no easy task for me w/Scott & Riley in the house)...anyway, now I am trying using cloth napkins instead of paper, making my own cleaners w/"safe" for kids ingredients, installing an aerator on our kitchen faucet, and now (I'm so excited about this one!) using gDiapers instead of disposables. I'm so nnnnooottt a cloth diaper person, but this, I can handle. They are awesome & cute! A bit more cost than my Target disposables I was buying, but much more friendly to the environment. Just a bit higher cost than the Huggies Supreme. I think its worth the cost. Hopefully, by people like me talking about how great they are and turning on others to them, the company can lower their cost. Enjoy the pics of her in her little g's! I'd love for people to sign my guestbook w/suggestions of their favorite going "green" thing!
Also, Avery is 1 week into a milk challenge. She had allergy testing that came back negative so we are to slllooowwly add whole milk to her diet. She is up to 2-3 oz. in each bottle. So far, so good. And, she is our little carnivore. Ham, ground beef, turkey - she loves it all!


By the way, in 6 days she'll be 1! Wow!

Look what I can do now!

I pulled myself up in my crib! Watch out everyone...here I come! Big sisters, better put your toys up higher. Mommy & Daddy, no more moving things up on the couch out of my way. I can reach now!

Easter Beauties

Happy 6th Birthday Shelby!

March 21, 2002 I woke around 8 a.m. Riley and I had spent the night at my parent's house because Scott had to work late the previous night. I just wasn't feeling the best, so we all decided it would be best for Riley & I to be there. Earlier, the evening before we had taken Riley to see Bear in the Big Blue House Live at the Coronado theater and then Scott went back to work. My Mom had a meeting at the church in the morning and kept asking me to get up out of bed if I wanted to shower before she left. Riley was just 2 then and needed supervision; no showering while she played or watched TV. Finally, I mustered up the motivation to get out of bed. As I sat up my water broke and thus, our journey into our life with Shelby began. About 5 hours later she entered our lives. She came out of me as fast as you see her run around these days. We took our baby home a few days later, clueless as to what the next week would bring. Oblivious to what inner strength we all had that was going to be needed very soon. Shelby's first 10 weeks of her life were hell for us as her parents. We spent alot of that time crying, researching, asking questions of doctors and wondering if our baby would make it or not. "Transplant" was a word introduced in to our vocabulary that we only thought happened to "other" people. Not us; not anyone in our family.

Fast forward to 2008. Skip over all those awful memories that no parent wants their child to have of IV's, "sleep medicine," countless x-rays, blood tests, hospital stays, taking daily medication, broken bones, and more doctors visits in 6 years than 10 people have in their lifetime. Let all those wonderful memories of fun, joy, and excitement flood over you. Shelby is so special. I feel so honored that we were chosen to be her parents. She's not an easy kid by no means; challenging, yes, wonderful, yes, brillant, yes, beautiful, yes, a gift from God, YES. She is so strong, brave and very forgiving of all that she has had to endure. She knows no other way of life. All these experiences I wish she never had to know have and will continue to form her into the person she is. Tough as nails with a gentle, HUGE heart. God has big plans for her. She already is a child of our church congregation. Everyone's faith has been poured into that child. It has lifted her through many tough times and continues to hold her up in the good times. Quoting the African proverb: "It takes a village to raise a child," is so true of Shelby's life. Thank you to ALL who have been a part of that.

6! Wow! What a huge accomplishment with all this kid has been through!!! SIX, SIX, SIX, SIX!!! Cool! We celebrated at Coco Keys with Shelby's best friend Kate, our friends TeriJo & Anika, and, of course, me, Scott, Riley and Avery. Lots of fun was had by all and, thank goodness, baby A was in a great mood. We kept getting compliments on what an adorable baby we have! She didn't like the water much, but liked watching all the action going on. She was a trooper especially since we were there during her prime nap-time. In the evening Shelby picked out a birthday supper of mini corn dogs, french fries and garlic bread. She also chose chocolate ice cream and the most chocolatey cake there was at the store. I think I still have a sugar buzz going this morning! We also watched the movie, Enchanted, per her request.

Enjoy the pictures of my beautiful 6-year-old's birthday.

Definite Improvement

Yesterday Shelby had clinic in Chicago. The ultrasound showed no change in the cyst (yea!) and her labs are much, much better. She went back to school today b/c her immune system is working again! WBC in the 6 range! Woohoo! They are trying her on a new med for the re-occurring tummy pain. I don't have the name of it in front of me b/c I had my Mom drop off the script today at the pharmacy. Hopefully it will work. They were very impressed w/her growth and energy. They know that we had a rough week last week, but are very happy to see that she's bounced back, even if it did take a dose of Neupogen. She goes back in May to see cardiology and hepatology. Let's pray, hope, knock on wood, that no more icky viruses hit our house anytime soon!

Thank you Mom!

For those of you who have followed Shelby's hospitalization this week, you know that my Mom did an excellent job of updating. THANK YOU MOM! Behind the scenes, she was also juggling the care of Avery, Riley and my Dad (and sometimes me) and trying to stay sane. She became a grandma again this week, too, and spent some time loving up her new granddaughter. SHE ROCKS! I am so lucky to be her kid!

Shelby's labs yesterday looked pretty good. Her WBC is up to 3.1 and her ANC is just about 1500. Is it the Neupogen or her immune system doing it on its own? Only time will tell. We head into Chicago on Tuesday for an ultrasound of her cyst and for liver clinic. We'll see if her labs hold steady. Please continue prayers for her.

The "bug" is making its way through the rest of the Martin 5 as Riley and Scott are now coming down with it. I hope its stay is brief.

Here are some pictures my brother took of Shelby when he could pry himself away from his new beautiful daughter.

Shelby being admitted

(I'm home right now for a few minutes gathering up some things before heading back to the hospital. This post is copied from my Mom's prayer e-mail group for Shelby.)

Dear family and friends,
Shelby is being admitted to Rockford Memorial Hospital this evening through the ER. Yesterday all day, she had a low grade temp, but it went away. It was the third time since she had strep throat in January that this low temp thing happened. Jenn emailed Chicago. Shelby has an appointment March 11th for an ultrasound and clinic visit, so they said to wait until then. Then this morning temp was back and went up to 103. She complained of her tummy hurting and her throat being sore. Of course, it's Saturday. Fortunately, both her pediatrician and ped gastro dr. are on call and suggested some tests at the ER. Several liver numbers are elevated, although Jenn said her bilirubin number was OK. Warrants an admit, so they are waiting to go "upstairs" to a room. Lots of "things" are going around, but with Shelby, you never know. Avery and Riley are here with Thomas and me tonight. Please keep Shelby and Mommy and Daddy in your prayers. Remember her sisters too. Grandma's is nice, but it's not home! I will post updates on Shelby as updates are available on my blog www.tchardwick.blogspot.com
Thanks,
Grammie Cori

Sick again

Last night we spent about 3 hours in the ER with Miss Avery. She went to bed just fine, but woke up right before midnight crying, wheezing, barking and running a low-grade temp. Yup, its croup. They gave her a breathing treatment and a big dose of steroids in the ER and then sent us on our way. Mind you, that took about 2 1/2 hours, but it made a big difference. Today her temp is gone, but she's not quite back to her old self.

Shelby has been looking not quite right lately. Kind-of pale, pasty-looking. Yesterday I called her GI doctor and he ordered labs. They look pretty good except her platelets, hemoglobin and hematocrit have dropped a bit. She woke up today with a low-grade temp so I took her in for him to have a look at her. We're just going to watch her for now and repeat labs in a week.

Otherwise, we've been getting along great here. Avery finally figured out in the past few days how to crawl forward and is everywhere! Last weekend we all traded bedrooms so that Avery could move out of our room. That went well, but was exhausting for Scott and me! We still have to finish painting Avery's new room (Shelby's old room) so she's sleeping in the portacrib in our new room (Riley's old room).

Here are some cute pictures of our girls taken recently.
Enjoy and Happy Valentine's Day!Riley in Audrey Hepburn shirt looking way too grown up!

Avery stuck under the dresser

One day Avery decided to nap a bit earlier than usual.

Riley and Shelby at High School Musical on Ice

On the way to High School Musical on Ice

Strep & Colds

I'm the latest victim. About a week-and-a-half ago, Shelby woke us at 2 a.m. with a temp of 105.6!!! Of to the ER we went. Thankfully (only a liver parent could appreciate that comment) she was diagnosed with strep. No liver issues and no need to head up to the Peds unit!!! Yea! About 4 days later Riley started complaining of a sore throat so our Pediatrician automatically treated her for strep. Everyone was well enough for our Coco Keys visit, part of the big girls christmas presents from us. Later in the week, both big girls developed colds and now I have strep. Fun, fun, fun....

Enjoy the Coco Keys pictures!

Coco Keys

Back to the grind

Nothing much going on here. The Big Girls went back to school today and I will be back to work this afternoon. All is going well, but we are very BUSY! Enjoy the pictures!

Xmas Day - Early Jan

Its beginning to look alot like Christmas...

Go Packers!
Unfortunately they lost, but aren't these people cute?!?!?

Going to see Santa

Hardwick Christmas

Check this out...

Enjoy!