Final word on the cyst (finally!)

I had to use my I-mean-business tone with Chicago on Monday and let them know how mad we were getting at not hearing from them. So, amazingly enough, Dr. Alonso herself called me back that afternoon. But..I couldn't answer the call because I had just dropped my cell phone (our home/cell phone) in a small bowl of ranch dressing. Why, you ask, was my cell phone around ranch dressing...well, don't ask...just remember I'm pregnant and allowed to do crazy things like that. Off to Verizon Wireless I went with my blood pressure skyrocketing, I'm sure. The tech guy was able to make my phone work again, but told me it was a goner and I'd better contact my insurance to get a new one sent out. Yea, whatever. Its working just fine. Anyway, before I left the store I listened to my voicemail from Dr. Alonso. I did also call back and ask to talk to her (which I did). Seems she was the relay person seeing as Dr. Superina would have called if he wasn't out-of-town for a few days. This cyst is located in Shelby's liver. It is most likely the result of dilated bile ducts and filled with bile. Since it is not causing her any pain or infections they're just going to leave it. In February she'll have an ultrasound to check on it and we'll pray and keep our fingers and toes crossed that it doesn't start giving her trouble. And that's that!

Scott and I were talking Monday night how funny it is we've been told our daughter has a cyst in her liver and how relieved we are. Mind you we've had 4 years of experience with this so that's how, in the grand scheme of crappy livers, this is not a big deal right now.

If any fellow liver disease parents are reading this and have experience with dialated bile ducts and/or cysts in the liver, please share your experience with us. We like to be armed with plenty of information for when this sleeping beast awakes.

Thank you so much for your prayers for Shelby. They mean so much to us and we can feel the support everyone is sending her way.

Happy 7th (wow!) Birthday Riley!!!

Yes, unreal, I know. 7. Seven. 1,2,3,4,5,6,7! Yesterday my firstborn turned 7. She had a wonderful day and, as you can tell by this picture, is cuter than ever!Shelby couldn't wait to give Riley her present. She woke her up yesterday morning to give it to her. Riley is a bit sleepy still in this picture.
Here is Riley's most prized birthday present. A beautiful vanity set from Grammie & Papa. Also you can see the flowers she received from Uncle Freddie & Auntie Lu from Florida. They're beautiful!
And this picture just shows you the cute things they do that help keep Scott & I from focusing too hard on all the tough things in life. Our hula girls. Oh yeah, they did the hula dance for us, too.
Today we'd better hear from Chicago on what the next step is with Shelby or I will not be a happy camper. Also, today I have my 16-week check-up with my OB. I have some extra testing that needs to be done, so please send some prayers my way. Thank you!

HIDA scan results

Shelby last Friday before and after her CT scan

Shelby's HIDA scan was yesterday. Things went fine. No, she was not thrilled about having to be poked, nor was she happy about being still for the first scan, BUT after that it was smooth sailing. After the first hour, they let her eat and we were able to walk around between each scan.

The results showed "normal emptying through the liver into the bowel," "no contrast goes into the cyst," and "doesn't appear to be bowel from surgery or bile leak." What does all that mean? Well, the doctors were hoping that contrast did go into the cyst so they could see its exact location and what it is attached to or possibly filled with. But it didn't show any of that. Now, on to more testing. We have to wait for Dr. Deutsch (Rockford) and Dr. Alonso (Chicago) to decide what the next step is. Most likely it will involve inserting a needle into the cyst while Shelby is sedated, drawing out the fluid, and then inserting dye directly into the cyst to see where it goes. Ugh. We just need an answer as to what this thing is!

Please continue prayers for our sweet girl. I will continue to keep everyone updated. Thank you.

Look close. She lost her 2nd top tooth.

The results?

Shelby's CT scan was today. Other than the 2-hour delay because of a miscommunication between anesthesia and radiology, the test went fine. Daddy, Mommy, and Papa got to be with her as she went to sleep. Of course, Shelby will tell you she just decided to close her eyes for a while. She was not happy about drinking the CT contrast, but she managed. There were tears, but 10 ounces were downed in her new Sponge Bob cup. She fell in love with the wagon at the hospital and we spent much of the 2-hour delay pulling her through the halls in her "bathtub." She took a white blanket and would spread it out so it was very smooth and then lay under it. The blanket was her bubbles. Too funny!

Dr. Deutsch, her local GI, called a little bit after 5 p.m. with the results. NO TUMOR/MASS!!!! Thank God! It does not look like cancer. There is a fluid-filled cyst that they can see, but they don't know where its coming from. Is it in the liver or behind the liver? What is it filled with? Why is it there? All those questions remain unanswered. It is most likely something related to her Kasai procedure and liver-related, but they weren't able to get a clear enough picture from the CT scan.

So, what do we do next? On Monday Dr. Deutsch will order a HIDA scan. Shelby had one when she was under a month old and that was one of the big indicators that pointed to Biliary Atresia. Hopefully with this test, the dye will go to the area where the cyst is, showing where it is coming from. With today's test, the dye did not go to that area that well, making it difficult to tell what is causing the cyst.

If the HIDA scan does not give them good results, the next step with be going in with a needle. They'll drain the cyst to see what the fluid is and shoot in dye to see where it goes from the cyst.

Thank you everyone for the prayers for her. She still needs them. While its a relief that there was no mass and that its not looking cancerous, there is still concern as to what exactly is going on in there.

Happy Halloween!

Check out these photo albums I just created of October fun!

October

Fall & Halloween the past few years

Crappity, crap, crap, crap....crap

Sorry folks. That was the best title I could think of. That's exactly what Scott & I are feeling. Why, you ask? Shelby's nephrologist, Dr. Langman (who manages her bones), orders a renal (kidney) ultrasound every 6 months to make sure that the Fosamax isn't taking a toll on her kidneys. The latest ultrasound was done in August, but we just had our appointment with him last week. He is thrilled with how well she is doing and ordered a DEXA scan and slew of x-rays for when she turns 5 in March. He'll assess how well her bones are doing then and decide whether to continue the Fosamax or not. So that's great news. It goes downhill from there. Then he mentions that in her ultrasound report the radiologist says there is a gallbladder-type something or another that they saw in her abdomen. We inform him that she no longer has a gallbladder as what was left of it was removed during her Kasai. This "thing" wasn't on the previous ultrasound. We all then decide that Dr. Alonso, her hepatologist, should take a look at the ultrasound report. Today I finally got a hold of Dr. Alonso's nurse and there is enough concern about what Dr. Alonso is calling a "mass with a cyst-like structure attached to it" for her to order a CT scan with oral and IV contrast. This most likely will be done next week at Rockford Memorial Hospital. Believe it or not, with all Shelby has been through, she has never had a CT scan. They are going to sedate her for it (yea!), but she still has to be cooperative enough to drink the oral solution before they give her sedation.

Of course, Scott & I are worried ALOT about this. What could this mass be? We don't even want to begin to speculate. Please pray for Shelby. Please pray that whatever they saw is now gone. Just gone. We don't care where it is or what it was as long as its not in our daughter's body. We are scared.

The Martin Girls...will that blog name still be appropriate in April?

See my dilemma? Will we be able to keep it as the Martin girls or will it have to be renamed the Martin kids? If you haven't guessed it yet, that is the picture of Martin kid #3 taken today. I am 10 weeks pregnant!!! We are thrilled, scared, excited, overjoyed and anxious to meet this new little person in 30 more weeks. Stay tuned for all the fun details. So far life (for me) has been filled with horrible nausea. So much to the point my doctor prescribed Zofran for me. I love that medicine! I've been on it for 2 days and am finally off the couch. I'm still pretty beat from being so sick (and pregnant) so I'll write more later. Just wanted to share our picture of the "blob."

By the way, Riley & Shelby are very excited that they are going to have a baby brother or sister! They are going to be the best big sisters!!!

They're out!

Riley's tonsils and adenoids were removed on Tuesday and we are so proud of our girl. She did wonderful!!! We were expecting a bit more whining and fighting from this kid, but she has just amazed us. Monday she had to have lab work done pre-op and, with a bit of coaching from her little sister, she just stuck out her arm and didn't even whimper. I was pleasantly shocked. Monday night we stayed up late watching one of her favorite movies while eating ice cream and just enjoyed each other. Tuesday morning she was none too pleased with me as I realized she needed a bath as she wouldn't feel like bathing for a few days and she was due for one. We woke her around 5:45 a.m. and threw her in the tub with promises of warm, new pj pants waiting for her when she got out. She was not nervous at all as we headed the hospital, waited forever (a nurse called me on my cell phone after we had been in the waiting room for about 1/2 an hour asking if we remembered Riley's surgery had been moved up - Yes, I replied, we checked in about 30 minutes ago - they were there in moments to retrieve us), got her vitals checked, and played with her Daddy. She did opt to have some Versed and took it like a champ. Off went my beautiful girl with the anesthesiologist like she had not a care in the world. Just under an hour later they wheeled our sleeping beauty back to us. All had gone well. We just sat next to her and admired her peaceful sleep and her beauty. About an hour later she woke up and we had to fight a bit to get her to take the tylenol with codiene, but back off to sleep she went. We took her home less than an hour later where she inhaled about 4 popsicles. We did have one time late that night when she was due for her medication when we thought we might be taking her back to the hospital because she had herself so worked up and refused the medication, but somehow we made it through that. Yesterday we did have a quick visit to the doctor because the left side of her face swelled up, but all looked well in her throat so it has been determined that her allergies (thanks to Mommy for those genes) are the culprit. Today she is on regular tylenol and has been eating her Daddy's wonderful mashed potatoes. She is doing well.

Miss Shelby has been to school all this week. Her latest round of tests came back negative so we're just keeping an eye on her. She did give Grammie a bit of resistance going to school Tuesday morning, but thanks to Mrs. G., the day went well. She has been enthusiastic about it the past few days. In fact, its really strange to have Riley home and Shelby at school. I'm used to it being the other way around! Shelby was disappointed she didn't get to see her sister in the hospital, but she is enjoying have popsicles and ice cream in the house! Check out her eyes. She learned to cross them recently so that's what I get from her now when I want to take a picture of her. That kid!

She's better...she's not...I don't know!!!

Does this look like a sick kid? I don't think so. This was 1 of the 4 days she didn't have diarrhea. I left a message for Dr. Deutsch on Thursday that only said "Its back." More testing is being done now. Hopefully early this week we'll have some answers. Giardiasis is one of the possibilities being looked at as well as IBS. She did make it to school this week 2 1/2 out of 4 days. Not bad considering wednesday she was absent due to a follow-up appointment with the urologist in Arlington Heights. We'll see what this week brings. We're just taking it day-by-day. Please keep her in your prayers.

Enjoy the pictures!

2nd 1st day of school

Hours of entertainment had with the Mr. Potato Head glasses

The tooth finally came out - isn't she cute!?!

Happy 5?th birthday to Grammie September 4th

The saga continues

Shelby has not made it to school yet this week...and she probably won't. Monday included a visit to Dr. Deutsch, lab work, and an abdominal x-ray. Then, Monday evening we received a call that her lab work indicated some type of infection so we headed off to Immediate Care for more labs. Everything came back negative, but we did have some suspicion about her ears so today we saw the Pediatrician. She does have fluid in both ears and is now on antibiotics. So far...knock on wood...there has been no fever today. (Oops, I spoke too soon. I just took it and its climbing back up again.) The diarrhea seems to have gone away, but I think I'll be keeping her home the rest of the week to really get better before she heads back to germ-land next week.

Miss Riley had an appointment this morning with an ENT due to mouth-breathing, snoring, and horrible morning breath. He examined her tonsils and they are almost touching. He decided from everything I described that she has obstructive sleep apnea from them. So...September 12th she will be getting them and her adenoids removed. She has no clue yet. We'll talk to her about it the weekend before surgery. She has had general anesthesia before for an MRI a few years ago so I'm sure she'll do fine, but she's not one for pain, thank you very much! Recovery will be interesting...I'm excited for her, though, as I hear kids that get their huge tonsils removed feel much, much better afterwards.

Oh, and, I have a sinus infection on top of everything. We can't wait to be feeling healthy around here...

First Day of School

Look at them?!?!? They've changed so much in the past year! Can you believe they're in 1st grade and pre-k? I can't! The picture on the left is them waiting down at the bus stop. Yes, I did follow the bus to school and then spent the whole morning there. No, not crying outside of Shelby's classroom. I was talking with the nurse about Shelby's health care plan. They both enjoyed their first day alot.

Then, that evening, Shelby got sick. Yup. Doesn't take much sometimes. So...she missed her first whole day on Friday. She cried when all the other kids got on the bus. I did, too. Poor kid. That's the way its going to be for her. She just wants to be "normal" like the other kids.

So far, tests for c-diff and rotavirus have come back negative. A stool culture is pending. Temps in the 100 range keep coming and going. We'll see what tomorrow brings.

Thanks for the inspiration Becca!

So what have we been up to since Shelby's hospital admission? Let me tell you in pictures...

Shelby & Grammie watching Riley's summer camp program

Checking out Uncle Keith's "big" tractor at the Krapf family "Christmas in July"

Riley's first time tubing (can you see her face by Scott's?)
or maybe I should leave the caption as
"Scott trying out his 'new' shoulder that was just fixed in December?")

First lemonade stand

Both of these pictures are just plain CUTE!

That's what we've been doing. The girls have been working hard growing like weeds, especially Riley! They each have their own bedrooms now and I'm working on a playroom for them in the basement. Shelby has remained healthy (so far) this summer since the beginning of July. They both start school in a little less than 3 weeks, but who's counting! We're just trying to have lots of fun!

Take care!

Home sweet home

You must be feeling better when you can act like this with your sister!

Shelby made it home yesterday. There was concern of low magnesium levels and a low white blood cell count that gave her 1 more night at club med. She took a 3-hour nap when we got home and then slept another 12 hours last night! She ate enough supper last night to satisfy us and has drank well and eaten some crackers this morning. She needs to keep up what's going in to compensate for what's still going "out," if you know what I mean, to keep herself out of the hospital. Our house has a nice bleachy-clean smell as I have been trying to kill any remaining rotavirus that might be lingering around. Thanks so much for your prayers for her!

This is how Riley kept herself busy at Grammie & Papa's house while Shelby was in the hospital. She's quite the artist. I can't wait to hang some of her paintings in the playroom!

I don't even know what to say about this picture other than it makes me smile! Take care!

Vacation @ club RMH

Yup, Miss Shelby has been in Rockford Memorial Hospital since Sunday night. She has rotavirus - yuk! Hopefully she can come home early this evening pending some more tests. Please keep her in your prayers.

Great news in Chicago!!!

Yea! Yippee! Yahooooooo! What more can I say?!?! Shelby had great visits with all her doctors in Chicago. On Monday we had labs drawn here in Rockford. That was a treat - not really. I did, for the first time, have to chase her down the hall (man can she run fast) when they called her name, and she did fight hard (through 2 pokes), but was all smiles when it was done. Her liver labs look great. For those other liver families out there her ALT and AST have risen, but her doctors don't care. Everything else looks great and she is growing, growing, growing and feeling very energetic. She has gained 6 lbs. and grown 4 in. since last June! Wow! The cardiologist didn't see any problems and said she didn't need to see her for 2 years unless her liver takes a turn for the worse and....drum roll please.....the Top Dog, Dr. Whitington, said that she didn't need to be seen for another YEAR! Did I type that right? Yes, a YEAR!!!! He projected that at the rate she is going she wouldn't need a transplant until she was 8 - 10 years old. Now, he can be wrong either way. She could need a new liver next year or when she's 20, but that was his guestimate (which they hesistate to give). He said her liver is actually the size of an average 4-year-old, but with cirrhosis. Her spleen is still huge, though. He also took her off 2 meds and, after some labs next week, she might come off 2 more. We're down to giving her meds 3 times a day instead of 6! Can you tell I'm excited? Wow!

We stayed overnight at the Kohl's House and took the girls to Oz park to play. The next morning we visited with Natalie's parents and then headed to see the urologist. After getting very, very lost despite having directions we made it to Westchester. We'll be seeing the urologist again in a few weeks, but nothing too big is going on there. They did do an abdominal x-ray and Shelby was such a big girl. She climbed up on the x-ray table all by herself and laid there very still - cool! As a treat for both girls being so good for 2 days of doctors' appointments we took them to the Brookfield Zoo. Lots of fun was had there and I'm kicking myself for leaving my camera in the van in the parking lot way, way, way from the zoo's entrance! We made it home safely around 9 or so last night.

Please continue to check on us here even though things are quiet on the medical front. Also please continue to pray for Natalie and Annika as they both have tough roads ahead of them.

Fun with Daddy

Saturday, while I napped, Scott and the girls got out the camera and hammed things up. Aren't the girls' smiles just awesome? Enjoy! I'll update more after we get back from Chicago.

School's out for summer...

Yes, the girls do like to sing Alice Cooper. You can thank their father for that! Anyway, school is out for summer here in northern Illinois. Yea! (I think.) When Shelby was sick as a baby I would pray "Dear God, please let her get better. I can't wait until they fight like sisters because then I will know Shelby is feeling well." Well, He heard my prayers and then some. One minute they'll be fighting like cats and dogs and then next minute you'll see them hugging. Gotta love 'em! I thought I would share some of their cute pictures I've taken since the last update eons ago.Here is Riley with her wonderful teacher Mrs. G on the last day of kindergarten. Riley has had Mrs. G as her teacher for the past 2 years and will now move on to a new teacher for the next 3 years at her Montessori school. She's almost a 1st grader...

We take Shelby to Chicago for 2 days next week. She'll see cardiology, hepatology, and urology. Don't worry, she's doing great - its just time for everyone to check-up on her. Watch for an update after those visits. Take care and enjoy the beautiful weather.

Doing fine here...

What else can I say? The girls are doing great and enjoying the warm days swinging and riding bikes. Beautiful Will is growing - check out Grammie's blog for more pics. Everyone take care and enjoy the Spring!