I'm not patient...

... so I called the GI's office at 3:18. :)

They called me back at 3:36.

Claire's total bilirubin went from 5.4 to 2.9. Her direct/conjugated bilirubin (the bad stuff) went from 4.1 to 2.2. These numbers are PHENOMENAL for Claire. This is great news. :)

Her liver enzymes are up (ALT from 195 to 328 and AST from 200 to 310). I asked the nurse if this is cause for concern, as this is the second time they've gone up in a row. She said it's cause to watch but not to be concerned. She said that liver function changes in people quickly - you could draw it in the morning and get a different result than you would that same night. Viral infections/colds/anything have great impact on liver function. Claire does have a slight cold so that may be why her enzymes are up right now.

The nurse is checking to see if Dr. Bhatt wants Claire to get drawn again in two weeks or three, but any which way... I'M EXCITED. Claire is doing wonderfully. :)

Deanna

Wonderful baby girl

Claire had blood drawn today. She did better with this draw than she has on any to date. Maybe it's because this is the longest she's gone between pokes? It's been two weeks to the day. Maybe it's because she's just used to it? I don't know why, but I'm grateful for it. She smiled while they warmed up her arm and hand with the warmer. She smiled when they put the tourniquet on. She only cried right when the needle went in - she stopped crying immediately after it went in. She smiled at the phlebotomist and her helper while they were filling the vials from her arm. She even smiled while they took out the needle. She is such a trooper.

Even though Dr. Bhatt wrote the blood draw series order as "routine", the Midland lab is entering them as "stat". So the results were to have been faxed to Ann Arbor by noon. I'm planning to call the GI office at 4pm to ask about the results. Aren't I waiting so patiently? The Momma Bear in me wanted to call at 12:01pm. :) I'm hoping that even if Dr. Bhatt hasn't read them, the nurse will give me Claire's numbers. Pray for low low low bili levels and lowering enzymes. If all is good, we go for another draw in three weeks. If all isn't so good, we go back in two. I like Kathy (our personal phlebotomist) and all, but I'd like to see her less often.

I'll update as soon as I have news to share.

Deanna

Biopsy pictures

While downloading new photos from my camera, I realized that the ones I took of Claire's biopsy spots were still on there. I thought some of you may like to see them. They're not gross... it's actually cool to see how small the spots are. If you look closely you can see two tiny spots on the side of her belly.

Updated our Relay for Life team page

I updated our photo and have added this cool one.



Tina has a cool button making gadget. She makes and sells these buttons to raise more money for Relay for Life. She can add the appropriate color ribbon to represent any type of cancer or you can decorate the buttons yourself. The kids had a blast coloring and drawing pictures to go on their homemade one-of-a-kind buttons last year. Be sure to pick up one (or a few) if you make it out to Nouvel this year!

I also have to say that I'm really proud of Josh and Meghan. They've each again committed some of their own money for this great cause. :)

Travels

One friend and coworker is in Florida right now (at Disney today and then off on a Disney cruise tomorrow). Another is leaving for Lake Placid, NY, at 8 tomorrow morning. One headed to fun-in-the-sun and one headed to ski/snowboard/visit Olympic Village and sightsee.

Me? Stuck at work, alone on my side of the building on Friday.

But I'm also counting down the day til our own Florida jaunt. 44 days until we leave... :)

Deanna

Birthday party gripe

I know the kids are 9 or 10 years old and in fourth grade. But the parents aren't. It'd sure be nice to get invitations for a Saturday sleepover party sooner than Wednesday of the same week.

I'm just sayin'...

Taxes

Filed.

Yay!

Short week, new semester (by Josh)

It is a short week of school. We go Monday through Wednesday this week. The reason is because of a new semester. We don't have a spelling list this week.

I'm excited for the short week because I get to go play at my Mimi's house on Thursday. I am sad because it is the end of my work for garbage duty. Halfway through the year is almost here.

This weekend, we're going to the Children's Museum again and I might get to take a friend. I hope that Matthew can come with me.

Have a good week everyone!

PTJ

Basketball

Josh is signed up to play basketball again this year. He has a new coach and a new team. His friend (and classmate) Trenton is on his team.

Games start the week of February 1. His games will be on Thursdays (times vary). If you want his schedule so you can try to make it to a game, let me know and I'll send it your way when we get it from his coach.

Go Josh!

Deanna

Important Link on the Left

I just added a new link on the left. It's one that's important to me and I hope you'll take the time to visit it.

The Saginaw Township Relay for Life is May 22-23, 2010, from 9:00 am - 9:00 am at Nouvel Catholic Central High School. Our family will walk again this year in honor of Joana, our dear friend's daughter. This year we are excited to have Claire join the stroller ride around the track. :) Tina, previously mentioned dear friend, is the event vice chair this year. Go Tina!

Please consider making a donation, big or small. You have plenty of time to do it, as the walk isn't until May. You can donate with your credit card online or you can donate with cash or a check. I'd also love if you could join our family at Nouvel that day, for any amount of time or laps. We had a good time last year, got some exercise and raised money for a great cause all at once. There are goodies for sale (food and trinkets) and there are activities all day long for kids of all ages. Come on out if you can make it!

Deanna

Tonight (by Josh)

Tonight, I am going to my Mimi and Pipi's house. I hope to have lots of fun with my cousins and sisters. We'll probably head downstairs when we get there. Downstairs we play baseball, catch, basketball, trains, hide and seek and tag. I also like to play on the putting green.

I hope that this time will be great.

PTJ

Papa John's pizza (by Meghan)

Papa John's pizza is the best pizza ever. Sometimes people get it fresh and when it's fresh it's really juicy and hot. My favorite Papa John's pizza is cheese. Their breadsticks are really hard and crunchy and I like to eat them with ranch and pizza sauce.

If you ever get a Papa John's pizza, you should get it right now!

Grades (by Josh)

My teacher sends home my grades every Friday. My parents have to sign the sheet and send it back to school. Here are my grades from last week.

Math 101% A+
Reading 86% B
Spelling 99% A
Science 98% A
Social Studies 96% A

I'm late to Science every day (except Friday since we don't have Science on Fridays) because I have garbage duty after lunch. Garbage duty is something that 3 students (including me) help the custodian with. We take out the garbage, put away the extra milk and take care of the trays. I like this job. I like to help. My friend Matthew gets my Science folder and pencil for me.

So far, school is great.

PTJ (Pokemon Trainer Josh)

Good news from Ann Arbor

Claire's opthamology exam, x-ray and echocardiogram were all good/clear. No sign of anything wrong through any of those tests. They're still waiting for the results of the JAG sequencing part of her blood test but are expecting that will be normal too. It's not Alagilles. Her blood was also run for her liver panel again. Her total bilirubin has gone down (to 5.4) and her direct/conjugated bilirubin has gone down (to 4.1). This is all great news.

So now we just get blood draws (for the liver function panel - checks enzyme levels and bilirubin levels) every two to three weeks until we go back to see Dr. Bhatt on March 5. If her numbers are going up, we'll get draws every two weeks and Dr. Bhatt will rethink her plan. If her numbers stay the same or go down, we get draws every three weeks. Claire's next blood draw is January 29. Fortunately, we can get these done in Midland and they send the results to Ann Arbor.

I don't know what all of this means in terms of finding out what is wrong with Claire's liver. I am preparing questions for Dr. Bhatt and plan to call her soon to get more info. In the meantime, I will enjoy the good news we received and enjoy my baby girl. At least we're getting confirmation that so much of her body/health is perfect!

Brief update on Claire

All went well in Ann Arbor today. The opthamologist said her eyes are perfect... nothing wrong with them at all. She went from there to get an x-ray (two pictures taken), to the lab for bloodwork and then for an echocardiogram. Dr. Bhatt is supposed to call on Monday with the results. I don't believe that Claire has Alagilles so I'm wondering what we're looking for and doing to figure it out next. More to come on all of that on Monday.

Belated birthday wishes

With all that's been going on, I missed wishing a couple of friends happy birthdays. So...

HAPPY BIRTHDAY NEUS! And congratulations on your wonderful news, mi amiga.

HAPPY BIRTHDAY LINDA!

I hope you both enjoyed your special days. :)

Deanna

Things to look forward to

We've decided that we need (and yeah, deserve) a fun weekend. So we're heading to the house of the other mouse, Chuck E. Cheese, on Saturday. We might go bowling. We'll probably make some popcorn and watch a movie too. It all sounds fun and blissfully normal to me. :)

Hey Tina... let me know if you're up for bowling on Sunday!

400 books!

Meghan hit the 400 book mark this morning. This is how much she's recorded on her school reading logs since the beginning of the school year. She's actually read more, that means, because she has read to Lauren and Claire and we haven't tracked all of those on her log. Go Meghan!

More testing tomorrow for Claire

As I said previously, the exclusion of biliary atresia means we have to keep on working to figure out what is going on with her liver. We are going to head back to Ann Arbor tomorrow for more testing. This time they're trying to confirm or exclude Alagille Syndrome (info at http://ghr.nlm.nih.gov/condition=alagillesyndrome). Specifically, she will be seeing a pediatric opthamologist, have an echocardiogram, get more blood drawn for genetic screening and have an x-ray to look at her spine. Alagilles isn't something you can test for on its own... you have to look for the symptoms/characteristics and diagnose or exclude it that way. We should have all of the results except for part of the lab ones back on Monday and Dr. Bhatt is supposed to call then. Our next appointment with her isn't until March 5, barring any really funky results from any of tomorrow's testing.

Alagilles isn't urgent (at least not like biliary atresia would have been). We could have waited two weeks to get this next round of testing done. We opted to get it done tomorrow though, as the waiting and not knowing is hard.

Claire will be eight weeks old on Saturday. She's been through so much in her short life. I was thinking about it in numbers while I was in Ann Arbor. Countless heel pokes (about 14, to be exact), five blood draws for the liver function panel (these come from the arm and mean three tubes of blood each time), one phlebotomist in Midland who can actually get blood from her arm without blowing veins, three ultrasounds, one HIDA scan, one liver biopsy with two passes, one catheterization, one urine collection bag, one night in U of M hospital, two trips to Ann Arbor and back, and a partridge in a pear tree. But really...she's had a really long eight weeks.

So many people have shown us love and support since this all started. Thank you all so much. I've been told that the kids' teachers have made a special point to check in with them to see how they're doing... thank you each so much for that. I worry about how all of this affects Josh, Meghan and Lauren. It's nice to know that the other people they spend most of their time with are taking extra special care of them too. It's also been nice to hear from friends and family members we haven't heard from in a while too. When you need them most, true friends and family step up to the plate. Thank you all.

Deanna

Best news we could have asked for

It's NOT biliary atresia. :)

We don't know what it is, but we know several things that it isn't. Thank you all for your prayers and support.

So on we go to figuring out what it is. We're going to have to go to Ann Arbor one day next week for a few tests but we'll be back the same day. Anything else it could be isn't as bad as what it isn't. YAY!

Brief update and pictures

The doctor was in this morning and said the paperwork has been filled out for discharge today. The GI doctors make their rounds between 9 and 11, so we won't be leaving until after we see them.

I took a couple of pictures of Claire yesterday and today. Here they are.

The fashionable gown:


Hanging out on discharge day (Gloworm made the trip with us):

Butofcourse...

One of the doctors just came in and said most of her lab results are back. The hemoglobin one, which determines if we could have gone home tonight or not, came back normal. So we could go home if we want. I've been up since 2:30am. I vote for sleep (and safety in driving). The doctor said to plan on going home in the morning.

Claire is in the crib now and I'm going to try to grab a little sleep before she wakes up to eat. Goodnight all!

Deanna

Still here

The phlebotomist came in late to take Claire's blood so we still don't have the results. It's too late to head home tonight so the new goal is as early as possible tomorrow. I'll update when there is news.

Deanna

Update from the hospital

We're back in Claire's room. She didn't go for her biopsy until 3:30. They finished it at about 4:30pm. She was in recovery until about 5:45.

Things went well. Because the biopsy procedure is so short, they decided to just sedate her through a mask. This was even better because IV sedation would have meant a breathing tube. She is still asleep (in my arms as I type) but is doing well. She'll have a blood test around 8:30pm to check her red blood cell count. If all looks good, we may get to go home tonight. If not, looks like it'll be tomorrow.

Dr. Adler is confident that we'll have the biopsy results on Thursday morning. We'll know more then about what will happen next.

Thanks again for the prayers and support.

Deanna

Bath-tized

We decided to have Claire baptized ("bath-tized" is how Meghan says it) yesterday.It was important to us to have our priest do this before Claire headed to Ann Arbor, just in case she's in for the long haul and more extensive treatment. A quick, late call to Father Pete and scrambling to invite any family members who could make it on short notice and in bad weather later, and Claire has been officially welcomed into the Church. No time for fancy clothes and a celebration meal afterward... just enough to do what was needed.

I'm up early today... Claire woke up to eat and I can't fall back asleep. We're leaving in two hours for Ann Arbor. I have things to do before we go. Please keep praying... today is going to be a long day for everyone.

Deanna

Blood test results - headed to Ann Arbor

I got the results of this morning's blood tests. Claire's numbers are going up. To Ann Arbor we go.

We have to be at the hospital at 7:30 tomorrow morning. She'll be admitted at 8. She'll be hooked up to an IV so she can get sugar water to keep her hydrated (she can't eat after 8am). She is scheduled for a liver biopsy at 2pm. When they take her back for the biopsy, they'll do an ultrasound as well.Claire will have to be anesthetized for the biopsy. Due to this, they'll keep her at least overnight. Her doctor said they may keep her two nights (depends on how she reacts to the anesthesia and if they determine she needs more tests or not). That will be determined after the biopsy tomorrow. Even ordered rush, the biopsy results take about two days to get back. So we should have those Thursday. If the biopsy shows biliary atresia, she will basically be immediately scheduled for a cholangiogram (would probably have that on Friday). If the cholangiogram confirms biliary atresia, the doctor would do another procedure (called "The Kasai procedure") right then. Recovery in the hospital for this is usually 7-10 days.

So I'm heading to Ann Arbor with Claire in the morning and will be there anywhere from one night to a week and a half. At my insistence, Brian is staying home with the other kids for now. They need some sense of normalcy as long as we can provide it. Pending the results of Claire's biopsy, Brian will head down to Ann Arbor later this week. Don't think Brian doesn't want to be there... he does. But those of you who know me know how stubborn I am and I really want him in Midland with the kids for now. I'm taking a laptop to Ann Arbor with me. I'll update as I can.

Thanks for all of the prayers and support.

Deanna

Happy Birthday Beth!

We hope you have a wonderful day!

Note from Meghan's teacher

Meghan recently brought home a thank-you note from her teacher. It was for the Christmas gift Meghan gave her. The note made me smile. I thought I'd share it here.

---------------
Dear Meghan,

Thanks so much for the yummy candy and cute candy jar.

Thanks, also, for being such a great person, smart girl, sweet student, talented singer and artist.

Have a great Christmas!

Mrs. H.
----------------

We've been really fortunate that the kids have had great teachers every year. But seriously... most teachers would have just said "thanks!". This note and teacher are really special. :)

Not so fun part of parenting

I'm posting a blog right now when I should be at the Children's Museum with Brian's parents. Brian is there with Josh and Meghan. Why am I not there? Lauren decided to make bad choices today, in spite of several warnings about not being able to go to the museum today if she didn't behave. Claire and I are home, proving a point to a three year old. I wanted to take the kids to the museum today... it was my idea. Yet here we are. Maybe she'll learn. Maybe next time, she won't have to miss out on the fun.

The countdown

So in the midst of all that is going on, we have a bright spot we are anxiously awaiting. We are heading to Disney in March. Brian's parents are taking the whole family (there will be 13 people in total). They're renting a Disney-decked-out kid-friendly house a mile from the House of the Mouse and it's ours for a week. We have some fun things planned, including a couple of character meals, a family picture in mouse ears and a Tigers/Braves spring training game. I want to take the kids to the ocean too. It will be the trip of a lifetime, making great memories, and will be even more appreciated by all of us after we get through this stuff with Claire. Brian has been counting down. Nine weeks from yesterday and we can't wait!

The kids

I hope for this blog to be a "family thing". I'm going to encourage the kids to post things. I'm going to update it with what's going on in the kids' lives. So here's what's going on with them at the moment.

Josh is ten and in fourth grade. He loves school. He's a "math wiz", as declared by several teachers, Brian and myself. His best friends are Dylan, Dakota, Trevor and Bailey. He loves playing golf, baseball and basketball. He loves following football (college and pro). He's a wonderful kid, a fantastic big brother and a huge help around the house.

Meghan is six and in first grade. She is a reading machine. She just hit the 325 book mark since the beginning on the school year. She is excited that her teacher moved her to the Junie B. Jones series yesterday. She has been reading them for a while at home and loves those books. Meghan's best friends are Breanna ("with an e", as Meghan will tell you - not to be confused with "Brianna with an i"), Sophia, Hope and Allison (her cousin). She loves dancing, singing, entertaining, going to musicals and putting on shows for anyone who will watch. She's a fun, happy kid. She's a great big sister and also a huge help around the house.

Lauren is three and is not in school yet. She'll start preschool next fall, though she thinks she's ready for kindergarten. She loves "Stinky Bunny", her baby dolls, her play kitchen, playing outside and watching cartoons. She is a lot of fun but is also strong willed to the point of frustration often. Lauren is growing into her own, is too smart for our good and is a goofball. We love her so much. She proudly tells anyone who asks that her name is "LaurenBigSister" and has loved having Claire around.

Claire is new, cute, sweet and smiley. I know it sounds a bit crazy, but she has rolled over twice on her own already too. The first time was from her back to her belly on the exam table at the doctor's office in Ann Arbor. The second time was two days later from her belly to her back in her crib (I was changing her and had walked out for a minute only to come back finding her flipped over). She's sleeping well, eating well (now that we switched her formula), doing lots of babbling and growing more hair. She has been a great addition to our family.

I can't leave Pika out. Meghan counts him when telling people how many people are in our family. Pika is our two year old cat. He was a stray at work that I took in and surprised the kids with. He gets defensive when Lauren is mean to him, but other than that he's a great cat. He loves to cuddle and sleep on you. He's a good kitty and we enjoy having him in our family.

November 21, 2009, and life since then

On November 21, 2009, at 6:54pm, we welcomed 6lb. 9oz. 19" Claire into the world and our family. She is the wonderful completion of our family.

But things haven't been easy for her or us.

Claire has elevated conjugated (direct) bilirubin and elevated AST, ALT and alkaline phosphate liver enzymes. Each was headed down since Claire was born but now they're on their way back up. Lots of blood tests (many with blown veins), two ultrasounds, urine tests, a negative HIDA scan and a trip to Ann Arbor later and much our our family's future hinges on the results of another repeat liver panel on Monday. If her levels have not gone down, we're likely looking at admission into the hospital on Tuesday for a liver biopsy on Wednesday. If the biopsy shows positive signs of biliary atresia, Claire will have cholangiogram and likely the Kasai procedure by the end of next week (it has to be done by eight weeks of age). Ultimately, this could all potentially end up with Claire needing a liver transplant some time relatively early in her life. This is all "worst case scenario", but it's our potential reality and we need to be prepared. There is a chance that it's something other than biliary atresia. The hope right now is that this is the case for Claire.

Our family has been through a lot with this. It's really been hard on Brian and I emotionally. We're scared for Claire and we're worried about how all of this affects the other kids. We are hoping and praying for the best but preparing for the worst. We're extremely grateful to the network of family, friends and prayer warriors we've been surrounded by the last seven weeks. We are really realizing how blessed we are with support when it's really needed.

As you have probably figured out by now, a big part of the reason for this blog is to keep track of what's going on with Claire. I'm also hoping that through all of this, we can be a source of information or comfort for other families going through what we're going through. I've done a lot of research online since this all started and, while there is a lot of medical/technical information, there isn't a lot of personal, relatable experience.

Today's plan

Josh stayed the night at Bailey's last night. When he gets home, we're heading to Applebee's for lunch and then to Remy's birthday party. This will likely be the last time my whole family is together for a long time... Keith leaves for Vietnam again on Friday. I'm hoping to get some family pictures today.

I should also get the Christmas tree down today. Yeah... it's still up. I think we get a pass on that this year. Life has been anything but calm, boring or normal since November 21, 2009.

Why the blog?

2009 was a crazy year for our family... full of high highs and low lows. It seems like a blog would be good way of documenting our life, for our own benefit as well as to keep family and friends up-to-date. So here we go!

Welcome to our little piece of the world... the online home of the six Campbells.