Why Did I "Weight" this Long???

So yesterday, I bought a HealthOMeter infant/ toddler scale to have at home so that I can monitor Elise's weight gain a littler closer.  Now I'm asking myself, "Why did I even "weight" this long??"  It's a great purchase, well worth the money, as far as I'm concerned.  Today, Elise weighs 11 lb 4 oz, which is just a 3 oz gain in the past week. I called Elise's dietician to review everything this morning...and she said that she's okay with the slow gain for now...at least she's gaining! She said that it is normal for babies to slow down with the weight gain at Elise's age. That makes me feel a little bit better.

Also, Elise's doctor says her Pre-Albumin level is GREAT, which is a good indicator of nutritional status.

Anyway...now that I have an infant scale at home, I can stop bringing her in to the office every week for weight checks. I'm going back to work in two weeks, so this will be a HUGE help!  She has clinic appointments often enough as it is...it will be so nice to eliminate the additional "weight check" appts in between.

Speaking of appointments, I was not able to get an appointment for Elise with the pediatric Urologist until the end of April!  I was hoping for something a little sooner....like this week...but no luck.  I HATE waiting for answers.  I don't even like waiting one day, so having to wait two months is really pushing it... lol!

The best part though is this...I called Elise's doctor to tell him that the earliest appt I could get is April 24, and I asked if he or his nurse could call and try to get in a bit sooner. He told me, "You don't need to worry about it...April should be fine." Well, maybe he shouldn't have ordered a VCUG test and made a referral to a Urologist if he didn't mean for me to worry about it. That train has now left the station!  Seriously, I will try not to worry so much about the urinary reflux....but it's very difficult.

Anyway, Elise is still generally doing very, very well!!  Her labs are terrific, she's eating well, slowly gaining weight, smiling, laughing, playing....and LIVING!!!  Two months ago, I swore that I would not let Biliary Atresia hold Elise back in any way...and let me tell you... it is not.

Just one more thing...

Well, as I have recently been only too happy to report, Elise has been doing extraordinarily well....much better than I ever imagined she would be this point, just 2 months post-Kasai. As a result, her liver clinic appointments have been seemingly more routine...not alarming by any means. However, at this last clinic appointment this past week, we were just about to leave the office when the doctor added "one more thing;" he said that Elise needed to be tested for urinary reflux. You could say I was less than excited to have to bring Elise back to Children's hospital for another test, exposing her to another dose of radiation, but the rationale did seem reasonable, and the benefits of this test reportedly outweigh the risks, so we scheduled the VCUG test.

This past Friday, I brought Elise to Texas Childrens' for the voiding cystourethrogram (VCUG), and the result is positive; Elise has grade 4 urinary reflux, which is obviously not good news. The doctor said that 80% of babies with urinary reflux outgrow it, so we could just "wait and see," and re-test in about 18 months...but...in the meantime, she would slowly be incurring kidney damage. We will be bringing her to a pediatric urologist within the next week at Texas Children's Hospital to further explore our options.  After doing some research and speaking with Elise's pediatrician and GI doctor, I am in favor of attempting to "fix" the problem now by having the urologist perform a "Deflux"procedure.  ANYWAY...this is just one more thing, but at least there is a fairly simple solution, and we can look forward to eliminating this issue.

On a bright note...David, Elise, Ethan, and I had dinner with a fellow "liver family" last night.  It was just so wonderful visit with them and to share experiences and ideas. They, along with many other liver families and friends, will be participating in the Liver Life Walk Houston 2012 next month with us.   By clicking on this link below, you can learn more about this event and visit Elise's personal Liver Walk fundraising page:

"Click" HERE to visit Elise's Liver Walk Houston 2012 personal page

OH Happy Day!!

I brought Elise to Texas Children's Hospital today for her liver clinic appt with Dr. Fishman. It went very well!  Her weight is now 11 lb 1 oz, up from 10 lb 4 oz three weeks ago. She's still just in the 3rd percentile for weight though, so the dietician advised me to start giving her 3 mL of pure coconut oil or MCT oil daily. That will add lots of calories and fat to her daily intake which should help with weight gain. The dietician also says we can start introducing solid foods like rice cereal and fruits; however, at this point it's mostly for development and taste, not nutrition. Elise still needs to be taking in at least 30-32 oz Pregestimil formula (24 cal/ oz) daily. 

And Elise's liver panel still looks wonderful...even better than 3 weeks ago!  Her conjugated bilirubin level remains at 0.0, which is as good as it gets! Her AST, Alk Phos, Albumin, and indirect bili are all down also, which is great!  Her ALT is slightly up, but not too bad, and then the lab made an error and didn't draw her GGT, which is one of the values we've been watching very carefully....so that is really frustrating.

Here's Elise's actual liver panel for anyone interested:
AST: 113          (normal range 20-60)
ALT: 83            (normal range 6-50)
ALK Phos: 364   (normal range 110-320)
Albumin: 4.4     (normal range 2.8-5.0)
Conjugated Bili: 0.0  (normal range <0.5)

We are still waiting on her vitamin levels and some other blood tests which were sent off. 

But...like Dr. Fishman says...looking at the patient is just as important as looking at the numbers, if not more important than the numbers...and Elise looks GREAT.  Actually, she looks AMAZING to me!!  Really, he said that we can rest assured that her liver is working just fine right now. Her color is pink, her tummy is less distended, there doesn't seem to be any fluid build up or ascites, she has no bleeding or vomiting, she's eating very well, and she is gaining weight.

After liver clinic, we went to see Elise's regular pediatrician to get her second dose of the RSV vaccine.  Hopefully, this vaccine will help to keep her from getting sick when she starts day care!  I'm happy to announce that Elise has been medically cleared by her GI/ liver doc and her pediatrician to go to day care, which means I can go back to work!!  I am being offered the opportunity to return to my job at UHC, and I have pretty much accepted!!  I have a potential start date of March 12, 2012!  This will go a long way towards restoring normalcy to my life and to our family routine, and for that, I am truly grateful. 

Oh happy day!! 

Laissez les bon temps rouler!!

"LAISSEZ LES BON TEMPS ROULER!"  Let the good times roll!!  HAPPY MARDI GRAS!!  I was just telling my mom how I wish we would have taken a little trip back home to Louisiana this weekend to enjoy some good times and good food with good friends and our wonderful family!!   We have so much to be happy about right now...it's a perfect time to celebrate Mardi Gras!  I could really use some good gumbo, jambalaya, king cake, and a daiquiri!  And maybe Elise would gain weight just by smelling the yummy food...LOL!!

Anyway...my parents, a.k.a "Grammie & Paw," spent this past weekend with us...and we had such a wonderful time! The weather was terrible, but Ethan still thoroughly enjoyed his play time with his pal, Paw, and Elise was loving her extra cuddles from Grammie....actually they both enjoyed lots of extra cuddles from Grammie!!

Well...Elise and I are going to Texas Childrens' Hospital tomorrow for a liver clinic appointment. I'm trying not to get nervous...because there are no indications that we will get bad news.  I mean, her poops have never looked better, she's eating at least 30 oz per day,  and she has no signs of jaundice in her skin or eyes. Peachy... right??  Well, in addition to her liver panel, I'm still asking for her vitamin levels to be drawn and for an ultrasound to be ordered.  I want a complete abdominal ultrasound done so I can see things up close and personal...and hopefully rule out Ascites.

One last thing...I want to thank everyone who has sponsored Elise in the Liver Life Walk Houston 2012.  The support is just overwhelming and means so much to us! We still have a little over a month before the event, which is scheduled for March 31st.  David and I will be walking while Ethan and Elise ride along in the stroller. We are on the "TCH Leapin' Liver Team" which is being led by Elise's GI doctor/ hepatologist. The funds raised will be going to the American Liver Foundation to support research, advocacy, and education related to liver disease.   Here's the link for anyone interested in visiting Elise's personal Liver Walk page:

"Click" HERE to visit Elise's Liver Walk page!!

Elise Marie, 4 months old!!

Before My Eyes

So much is happening these days, right before my eyes....

Elise is thriving and doing so much better than I ever imagined.  It has just been 2 months since she went to surgery for her life-saving Kasai operation, and she is already laughing in the face of BA. It's just surreal to think that before this "Kasai" operation was developed, babies like Elise, born with Biliary Atresia, would die in their first year of life.  Sure, Elise's battle is not over...odds are that she will still need a liver transplant at some point...but she has proven that she is a fighter, and this is one BAattle that she plans to win! She already has excellent labs, a great appetite, and good weight gain. She is eating more than 30 oz Pregestimil formula per day!  In fact, today she started eating 6 oz per feeding!! The doctor says, "LET HER EAT!!"  The GI/ liver team at Texas Childrens likes their BA babies nice and plump!  Well, Elise has a way to go before we can call her "plump," but she's working on it!  I am watching her reach milestones every day....a miracle is happening before my eyes.

Ethan is now 15 months old!  He just started walking last week...but he has really taken to it. First, it was just a step here and a step there, but now it's like he's saying, "Catch me if you can!" He darts across the room sometimes, like a little streaker! And tonight, Ethan started eating with his fork!  He actually took the fork out of my hand and put it in his mouth...as if to say, "I can feed myself, Mom!" Alrighty then!  He has also shown me this week that he can climb up the stairs!  Today, David walked in the front door with him, and they saw me at the top of the stairs....so David put him down, and up Ethan went...all the way up the stairs...with David right behind him, of course!  Wow!  Ahhhhmazing!!! Oh...but much to my dismay, he has learned to open doors.  We're going to have to step-up our baby proofing. Anyway, my little baby boy is just growing up SO fast....and it's all happening right before my eyes!

Well, I'm now seeing little white sheep before my eyes...so I suppose it's time for bed!  Nighty Night!!

Happy V Day!

HAPPY VALENTINES DAY!!  I must say, however, that Ethan and Elise are not having such a happy V Day....because to them, "V Day" means "vaccinations day." Ethan got his 15 month shots today, and Elise got her 4 month shots. Ethan started sobbing from the moment we walked into the clinic lobby....poor baby. At least Elise didn't know what was coming until it was too late. She was a trooper though....she only cried for a minute or so.  Ethan, on the other hand, cried the whole way home.  And as for me...my skin has become a lot tougher after everything I've seen little Elise go through.  Shots are the least of my worries....unless of course she develops a fever tonight...in which case I'll be up a creek without a paddle, because Elise can not take Tylenol due to her liver damage.

So while we were at the doctor's office today, Elise's pediatrician discovered that Elise has not had a VCUG test done yet-- a urinary reflux test- which is one of the diagnostic imaging studies that she apparently feels is indicated.  So, she grabbed the phone and of course called the on-call GI doc at Texas Children's Hospital, and they put her on the schedule for next week. Lovely. Now I get to spend the next week worrying that Elise might have kidney damage. She has already had two negative renal ultrasounds though, so odds are that her kidneys are fine. Right?   RIGHT???  Wow...these people sure know how to work me up!

Anyway....Happy Valentines Day to everyone. Hope everyone is enjoying their valentines as much as I am enjoying mine!!

"This Makes Me Sick"

"THIS MAKES ME SICK!!"  How many times have I uttered those words lately? So many things make me sick, including but not limited to Elise's medical issues, fear of the unknown, troubles of others in "Liverland," the tragic loss of a fellow liver mom this week, financial stressors.. and the list goes on.  

It's true though. I have been physically ill now for the past three days...and today, I woke up with no voice. I have a constant headache, fleeting nausea, sore throat, body aches, and congestion.  This is the second time I've been sick in the past month!  I don't even really have a primary care physician yet, because I've not needed one since we moved here to Houston in 2010.  It seems that my super immune system is currently taking a hit with this new all-time high level of stress, however, so I need to establish myself with a family doctor.  I'll put that on my "to-do list." 

I am scheduled to bring Ethan and Elise both to the pediatrician on Tuesday for vaccinations. Ethan is getting his 15-month shots, and Elise needs her 4-month shots.  I scheduled them both at the same time, on the recommendation of the nurse. As I think more about it though, I must be crazy to be getting their shots done at the same time...especially on a day when I have no help!  Oh well...I just as well get it done sooner rather than later.  It's just....the thought of trying to manage two screaming babies getting shots at the same time....THIS MAKES ME SICK!! 

TGIF...

Thank God It's Friday...This week is finally over, and what a week it has been!  We took Elise to have her 4- month pictures taken on Tuesday, which was SO much fun!  David got roped into working a whole lot of involuntary over-time though on Wednesday and Thursday, which was not so much fun

Anyway, let me share some pictures from this week. After all, pictures usually speak louder than words....

Photo by Kristen Purcell, La Vie Fine Art Photography
www.laviephotography.net

Photo by Kristen Purcell, La Vie Fine Art Photography
www.laviephotography.net/

Photo by Kristen Purcell, La Vie Fine Art Photography
www.laviephotography.net 

Be my Valentine??  

Elise LOVES this Valentines Day dress from her Nannie Rachel!!

Ethan and Elise were sure cracking up at something....
I wish someone would let me in on the joke!!  LOL!!  

Ethan saying, "What am I supposed to do with you, anyway?" 

Daddy and his baby girl!! :-)

Anyway, I am SO ready to spend this weekend with my sweet family! I'm holding my babies and my husband a little bit closer tonight, as I learned earlier today that one of my fellow liver moms, Jenny, who I've mentioned in previous posts, was taken off of life support this afternoon. She leaves behind three children and a loving husband. Her youngest child is just 11 months old, and her middle child has the same liver disease as Elise--Biliary Atresia-- and is currently awaiting a life-saving liver transplant. This just makes me so sad. And it makes my complaints seem so trivial. Situations like this really put things in perspective. I thank God every single day that I am healthy and have the wherewithal and resources which enable me to stay at home with Elise...and Ethan too! 

Oh, and one last thing...Little Miss Elise has her very own fundraiser page for the Liver Life Walk Houston 2012, scheduled for March 31st!! We'll be walking, and Elise will be riding in her carriage...aka stroller...LOL!  We can't wait!  So many wonderful people and families coming together for a great cause!   Here's the link to Elise's page for anyone who might be interested:

"Click" HERE to visit Elise's Liver Walk page!

I mean...what??

Do you ever get caught so off guard by someone's inappropriate comments that you can't find the words to respond?  That's about what happened to me today at the grocery store.  But this time, the "momma bear" in me prevailed, and I did actually find something to say.

Anyway, like I said, I was at the grocery store today, and Elise was of course with me...in the cart.  This woman--a complete stranger--comes up to us to take a peek at Elise.  That's not so bad, right?  Then she lifts up Elise's blanket. Ok, that was kind of working on my nerves, but I could handle it.  Next, she asks, "How old is she?" I tell her that Elise is 3 months old. Well, the next words out of her mouth shocked me. She says....wait for it..."Don't you think she's small for 3 months old? She looks small, kind of underweight. Is she eating?" I'm wondering if this is actually happening, and if I'm hearing this lady correctly. So I tell her, "Ummm...that's the type of thing I usually discuss with her doctor." I gave her an awkward look, and I started to walk away. I mean...what?  This woman obviously has no idea that Elise has a liver disease with malabsorption issues....so is she insinuating that I'm not feeding her?  But as I walk away, this woman continues talking, saying, "Well you should probably bring her to the doctor....she needs to see a doctor" At this point, I'm fairly certain there was smoke coming out of my ears.  I said, "And you should probably see a psychiatrist because I think you have a personality disorder." After that, I walked away and straight out of the store.

Anyway, I can't believe the nerve of some people. Of course, this particular woman was dramatic, attention-seeking, overly emotional, and acted as though she had more of a relationship with us than she does...so a provisional diagnosis of Histrionic Personality Disorder on Axis II is an appropriate explanation...in my professional opinion.

That's all.  Goodnight!

Hoping God Has Big Ears...

Today, I'm thinking...I sure hope God has big ears. 
More important than my "blog roll" these days is my "prayer roll." Of course, I'm always praying for Elise and for my own family, but also, through this experience, I have become friends with so many other "liver families," all of whom need lots of prayers.  This past week has been especially rough in "Liverland." Thankfully, I believe in miracles and the power of prayer.

Sometimes I start to get down, and I think we just have bad luck; I wonder why we got this hand that we are dealt. Well, let's put things in perspective...

One of my fellow "liver moms," Jenny, lives in Dallas, TX, is married, and has 3 beautiful kids. The middle child, Tank, has the same liver disease as Elise- Biliary Atresia- and is currently awaiting a liver transplant. A couple of weeks ago, Jenny traveled to Kansas to take care of her mother who suffered a stroke. While there, Jenny became acutely ill, was admitted to the hospital there, and was found to be in liver and kidney failure. She is also now in respiratory failure and on a ventilator. She desperately needs a multi-organ transplant, but she is currently being denied the life-saving transplant. I won't discuss the details of her denial, as it would be second-hand information, but things are not looking good for her at all. I'm praying so intently for Jenny and her family. That's all I can do....

I hope God has big ears.

And then we have little Claire, who received her new liver last week. She is currently experiencing a "bump in the road"- an infection related to her central line- but I pray that her treatment team will make the right decisions at the right times, so Claire will be better very soon!  

I hope God has big ears. 

Luke is also post-transplant and is undergoing surgery today to have a lymph node removed. The doctors apparently suspect PTLD (Post-Transplant Lymphoproliferative Disorder), a type of cancer which rarely affects post-transplant patients. I can't even wrap my brain around the words "cancer" and "liver disease" at the same time...so I can only imagine what Luke's family is experiencing at this time.  Oh, how I pray for this little boy and his family.

I hope God has big ears. 

Storm is a 19 year old young man, also diagnosed with Biliary Atresia, who is currently Kasai-only. His liver enzymes have quadrupled since last Monday. The doctors initially ran tests for Mono, which could have explained the sudden jump in his numbers, but the test was negative. Storm has really had no significant problems since 1993, according to his mother, so his current labs are obviously very scary and concerning for his family, as well as the rest of us here in Liverland. I pray that this is maybe just some sort of virus that will resolve. I just pray for him and for his family. 

I hope God has big ears. 

As I mentioned earlier, I have befriended so many other "liver families" in the past two months since Elise's diagnosis. Each and every one of these kids, and their families, also need our prayers every day.  I'd like for everyone reading this to take a moment to pray for our little friends, including Fatima, Abby, Coltyn, Landon, Loralei, Eleanor, Tayden, Luke, Bubby, Gracie, Kayla, Marissa, Millie, Sebastian, Sydney, Ember, Fiona, Lillian, Robin, Maggie, Ember, Robert, Tyler, Harris, Trey, Zane, Clarissa, Joshua, Noah, Rachel, Evan, Hadley, Lizzy, Emerson, Analiese, Brooke, Daniel, Daniel T, Addison, Ashlee, Jordon, Derek, Christopher, Audrick, Madeline, Claire, Thomas, Lottie, Benjamin, Julian, Mason, Bryanna, Martim, Sam, Denim, Harlee, and Grant.

I hope know God has big ears.

Veins, Veins, Go Away!

You know, near the end of my pregnancies, when my legs were swollen, I sometimes noticed varicose veins. I hoped they would go away, and they did. Little did I know that I would soon be worrying about varicose veins of a different, more dangerous kind...and it would be in my baby girl.  Well, I may be getting ahead of myself...but I am just really nervous at the moment, since I woke up this morning and noticed a dark, prominent vein across Elise's tummy....suggestive of portal hypertension and the associated gastric varices.

About a week ago, I posted a graphic, somewhat shocking picture of a bloody diaper related to another child's GI bleed.  So one can imagine how easily I begin "catastrophizing," thinking that Elise has these dangerous veins in her tummy that are about to burst, bleed, need banding, and ultimately accelerate her need for a liver transplant.

Elise has not actually been diagnosed with gastric varices or portal hypertension, but I suppose I should provide a little explanation for anyone interested. Gastric varices are dilated veins in the stomach, which can cause GI bleeding and can be life-threatening. This problem is commonly found in patients with portal hypertension, or elevated pressure of the portal vein system, which is a complication related to cirrhosis of the liver. Elise's liver biopsy and surgical report did indicate that there there is some cirrhotic tissue present in her liver, although the surgeon stated that he did not find her liver to be severely damaged at the time of the Kasai procedure.

I'm going to try not to worry too much about it for now...but I will be asking for an ultrasound at our next clinic appointment.

Anyway...

Veins, veins, go away..

Don't come back some other day!

Elise's liver wants to stay...

Veins, veins, just go away...

And don't come back another day! 

So who's ready for some good news??  Here it is....Ethan started walking last night!! FINALLY!! Oh, we had so much fun watching him walk back and forth from me to David, and all around the kitchen and living room. Of course, he had lots of falls...and each time he fell, he would get so frustrated!  It was so cute!!

And Ethan isn't the only one reaching a milestone...Elise rolled over from her back to her stomach for the first time today!! She's not a big fan of "tummy time," but I've still been encouraging it, and all of a sudden, she just rolled right over to her stomach! These are just the best times ever!!

Tomorrow, Elise is scheduled to have her 4-month pictures taken! Kristen Purcell, of La Vie Fine Art Photography will be taking her pictures. Kristen took my maternity portraits for both pregnancies as well as all of Ethan's pictures, our family pictures, and Elise's newborn pictures. The time, thought, and effort she puts into her sessions is exceptional. She is truly a phenomenal professional photographer.  Anyway, I am so looking forward to Elise's photo session tomorrow.  It will be one of those wonderful opportunities to put liver disease aside and just enjoy my baby!

Sweet Days...and SWEET nights!

Wow!  I am SO happy to say that I now know what it's like to tuck both of my babies into their own beds, go to my own bedroom, and sleep for an entire eight hours! YES! Elise slept in her own bed last night for the first time...and stayed there ALL night. She woke up around 5 am this morning and couldn't wait one minute longer to eat, but I can certainly handle that!  She took her 4 oz bottle and then went back to sleep until 8 am!

My little princess, tucked in her own bed, which was given to her along with the rest of her nursery furniture by her Grammie & Paw.

To me, Elise truly looked like a little princess when I laid her down in her bed. I felt like I wanted to sit down in the rocker and watch over her all night, but I didn't.  I left my both my kiddos in their beds upstairs and went down to our room, where I immediately set our video monitor to scan both nurseries. I LOVE my video monitoring system which has a camera in each room but just one monitor next to my bed.

Elise's Nursery

Ethan has been sleeping all night in his own bed since he was about 3 months old, which is what  prompted me to give Elise a try in her nursery last night.  It really couldn't have been easier.  I just fed her, changed her, swaddled her, and tucked her in...and that was it!  Of course, I examined the video monitor and "zoomed in" to check her breathing several times throughout the night....but I didn't have to actually get up out of the bed until morning!  OH, and to put a cherry on top...her bed sheets remained spotless all night long!  That's right....no spit ups!!  I had resigned myself to the fact that her beautiful bedding would be stained orange, but that didn't happen!  Well, it didn't happen yet anyway.  I suppose I now need to "knock on wood."

And back to Ethan for a minute...I must say we are so lucky that Ethan has such good sleeping habits...and "wake up" habits too for that matter. We just put him in bed at night, and knowing that it's time for bed, he goes to sleep without much fuss at all. And every morning, he usually just sits up in his crib, talking to himself until we go in to get him. As soon as we enter his room, he stands up, gives us a big smile, and reminds us that it's a brand new day!!!  SO SWEET!!

Ethan's face says it all:  "Good Morning Mom!!  It's a brand new day!!"

So, we're having sweet days and sweet nights right now here in "Liverland." And I couldn't be more thankful for that!  Have I mentioned lately how much I LOVE my little family??

Sharing Scar Stories

Today has been such a great day! This morning, I got together with four other "liver moms" and a "liver dad" too! These other families live in or around Houston, as we do, and we have been corresponding for a while now...so we planned this impromptu play date of sorts.

It was just amazing to meet these other kids with Biliary Atresia who are thriving and doing so remarkably well, whether transplanted or not. And these other MOMS are just fabulous and have been such a source of strength and encouragement since Elise's diagnosis....it was wonderful to meet them, talk to them, and swap "scar stories." We talked about diagnosis, doctors, hospitalizations, surgeries, labs, family life...EVERYTHING!! Talking with these other parents made me feel so much more positive and reassured that life really can be wonderful in spite of liver disease.

New "liver friends:"   Sydney, Landon, Abby, Eleanor, and Elise

So, Elise has Biliary Atresia, and we just don't know when the time will come that she will need that liver transplant.  But after today, no matter what the case may be, I feel confident that things will be just fine. She will grow up and start school, make friends, go on sleep-overs, take field trips, and enjoy family vacations just like any other kid!

Elise & Eleanor 

Now I am really excited about the Liver Life Walk, hosted by the American Liver Foundation, which is being held on March 31st in Houston.  It will be a great opportunity to raise awareness of Biliary Atresia and other liver diseases as well as a wonderful chance to meet even more liver families like the ones with whom I spent time today.  I am including the link to Elise's liver walk page for anyone interested:

"Click" here to visit Elise's Liver Life Walk page

Oh, and it is really interesting to see how some kids like to show off their scars, some are shy about their scars, and some don't realize that they even have a scar.  I wonder what type Elise will be when she gets older??  Today, the kids I visited with were showing each other their scars and also showing them to us. Their kasai or transplant scars are healed, and their bodies look just perfect. Whatever Elise thinks about her scar...one thing is for sure...there will always be "scar stories" to share.

Elise showing off her scar from the Kasai operation

To Just be a MOMMY!

Last night, I was trying to remember what it was like to just be a mommy...rather than a "liver mom" thinking about liver disease 24/7.  So... I decided to do my best to put liver disease aside for a while and enjoy my babies!

This morning, I spent some "cuddle time" with Ethan...you know, when he woke up at 5 am after going to bed too early last night. I don't get quite as much cuddles from Ethan lately, since he's been "on the move!" And THAT's why I don't want to miss out on even one single opportunity I have right now with him and Elise at home.  I never planned to be a stay-at-home mom...but since I've found myself in this particular situation...I'll be darned if I'm not going to enjoy it as much as possible!

Ethan LOVES bath time, so I dumped his bath toys into the tub to let him have a nice, long, leisurely bath.  Then I played "dress-up" with Elise...something I have done a couple of times with her and REALLY enjoy!!  Yesterday, I dressed her Elise in some of my baby dresses and bonnets. Today, I put her in a little pink ruffle dress given to her by her Nannie.  SO much FUN!!

More than anything, I want Elise to live a "normal" life.  We are really trying not to keep her in a "bubble" any more than necessary. We've been taking her and Ethan out to different places, like the boardwalk, park, Zoo, and mall. These are the kinds of things we've been doing with Ethan since he was 6 weeks old, and he enjoys it more and more each time we go. I hope we can always do things like this, because the family time we have together is so special; it reminds me that our family is perfect just the way it is, and  everything is going to be okay.

Elise dressed up in one of my little dresses from when I was a baby!

And here's one of my sweet baby bonnets!! 

Rub a dub dub...Ethan's in the tub!!!

A girl can never have too many ruffles!!  

Taking on the Dark Side

Well, it's not even 9:00 am, and I've already taken on the "Dark Side," as I like to call our insurance company.  I called this morning about a bill that I received after the entire claim was denied by this managed care company. As I began to question the claim, the representative asked me, "Have you received your explanation of benefits?" Wow. With as calm a tone as I could muster, I conveyed to her that I am actually well-versed in my benefits; I don't need an explanation of my benefits. What I do need is an "explanation of rip off." I mean...really. I offered to explain my benefits to her, which is exactly what I apparently need to do.  This representative then began reviewing the appeal process--a process with which I am already far too familiar. I honestly don't know why I waste my breath talking to these people....which brings me to....

Pregestimil-- Another battle I am preparing to enter with our insurance company. I have developed a game plan, with the help of Elise's liver doctor and dietician. I had the doctor write out a prescription for the Pregestimil formula, and we faxed it-- along with a letter of medical necessity-- to a medical supply company, Apria. Now, I will let Apria fight with the insurance company for coverage of this specialized formula. This formula may well remain one of Elise's many uncovered medical expenses, but it won't be without a fight by this "liver mom," who keeps her social worker cap handy but can quickly transform into "momma bear" when needed.

And now, we get to the "bright side!" I am thrilled to say that I woke up this morning to find that Elise's lab results from yesterday were not a dream!  I just keep staring at these numbers in disbelief. I mean, some of her liver enzymes are still technically elevated, but they are generally trending in the right direction. And as her doctor stated, the conjugated bilirubin level of 0.0 almost cancels everything else out for now. I have to remind myself that her labs could climb right back into the gutter at any time, but at least for now, a liver transplant is not on the horizon.

Sleep tight my little sweetheart...you're doing great!!

(Elise's skin tone is now the same as mine!!)

Our little ROCKSTAR!!!

I have such good news to report today....I simply must begin this post with a prayer:

Father, I thank You for every good and perfect gift that You have given to me in Jesus Christ. Thank You for your grace and the gift of salvation by faith. I thank You that Jesus Christ is in me, the Author and Finisher of faith. I have received the faith of God. I will not shrink back in fear, but I will grow in faith and confidence. I will walk by faith and not by sight. I know that faith pleases You. Nothing is impossible for those who choose to believe in You. I place my trust in You. I know that I will never be disappointed or put to shame for doing so. Thank You for the shield You have provided for my defense. Thank You for Your Word that builds my faith in You. I will walk and live by faith under an open heaven of Your possibilities.

So, Elise had a liver clinic appointment today at Texas Childrens Hospital. As I walked into her appointment this morning, I was nauseated with anxiety related to her weight and lab results. But my baby girl is a fighter...or as Dr. Fishman put it...a ROCKSTAR!!  First of all, she has gained 15 oz in the two weeks since her last clinic appointment!!  As of today, she weighs 10 lb 4 oz!!!


And now...to get to the lab results...


Let me preface this by saying that I have often been frustrated and upset by the length of time that it has taken to receive her outpatient lab results.  For this reason, I requested that her hepatologist (liver doctor) order the labs through the TCH "in-house' lab rather than sending it out. There is the possibility that this might result in a slightly larger out-of-pocket cost...but it's worth it to me for peace of mind. Well, I think I might do this more often, because the results were prompt and simply SPECTACULAR!!  


HER CONJUGATED BILIRUBIN LEVEL IS NOW 0.0 !!!!!!!  
That's  ZERO - POINT- ZERO!!!  
This is the best result possible, and the doctor said he was just "blown away" that her conjugated bilirubin level came down to 100% normal so quickly. 


We know that some BA patients' bilirubin level never does reach a normal level, so one can imagine how blessed and grateful we feel to receive this news today.


Here's her entire liver panel, for anyone interested in all the numbers:


AST- 131
ALT- 72
ALK PHOS - 293
GGT- 898
ALBUMIN- 4.4
CONJUGATED BILIRUBIN-  0.0  


Elise is scheduled for her next liver clinic appointment 3 weeks from now.  I am going to enjoy my little rockstar and assume that her liver is happy now, until proven otherwise!  


Thanks to all of our family and friends for the prayers and support...it means so much to us....and we know that prayers really do work!  True. Story.