Liver Biopsy Update

Yesterday Capper, Isaac, and I drove Daniel and Anellah into the hospital and dropped them off. Daniel and Anellah had the morning to get settled in their hospital room and receive some sort of schedule for the days ahead. Anellah received an IV (a traumatic experience that required an ultrasound to find a vein) and had blood drawn. She ate a super-special dinner of pancakes and fruit, had her medicines, and went to bed. Later she had to have another IV started, the other one must have gone out.

She had to return the favor of many pokes by giving Daddy a shot too!

This morning the doctors did the biopsy which was a short procedure during which Daniel was able to stay by her side. The doctors said there was definite scarring on her liver but didn't comment as to whether it was better or worse than they were expecting. She received platelets because she has low platelets due to her liver disease. Platelets stop bleeding and this procedure in and of itself can cause severe bleeding.

Post Biopsy, totally drugged!

The recovery today was pretty uneventful except that she had to have IVs started TWO MORE times. But she gets over things quickly and Daniel gave her one of her favorite treats- gum!

Tomorrow we think the plan is simply to have blood drawn a few more times, make sure she's not bleeding from the incision, and head home. Simple enough.

My real question is whether or not the doctors feel encouraged or somber about what they found on her liver but we don't really have that information.

Thank you for your thoughts and prayers!

To The Hospital We Go...Again

I guess it's kind of a rare treat, how many people get to pack a hospital bag 3 times in a 7 month period? October was Anellah's cranial surgery, January was Capper's birth, and May is Anellah's liver biopsy. If everything goes smoothly she will be admitted tomorrow and discharged on Wednesday. We're definitely banking on things going smoothly!! It's harder to pack this time because I know I won't be staying too. Daniel will be with Anellah while I stay home with Capper since he can't spend the night. It's definitely a lesson in trust for me since I tend to handle most things in the medical realm for our family but Daniel is 100% competent and will do a great job. He's also amazing at teaching Anellah things and getting her to buy into something really lame being "fun" so it's probably better that he's the one who will be there! For all I know he may teach her to read during those 3 otherwise boring days. Something really neat is that Anellah will be at UCSF Parnassus on the 6th floor which is where she was living prior to her coming home to us. The nurses are going to be THRILLED to see her since she's pretty much a celebrity to them. Please pray that the procedure will be complication free, that Daniel and Anellah will get some rest while in the hospital, and that the doctors will discover her liver is much more healthy than they had originally thought.


Of course this post wouldn't be complete without acknowledging Mothers Day. I feel so blessed to have two joyful kids in my life. Capper is such a sweet baby full of smiles. He has started rolling over once in awhile and is daily learning how to manipulate his environment like grabbing at toys. Anellah is a handful, but a joyful one! Yesterday we spent the day at the park and then having a special Mommy Date with both of Anellah's Mommies. Anellah, Shahada, and I all enjoyed pedicures. Anellah was thrilled to be able to have blue toenails and green fingernails which matched her face which she had painted with facepaint herself earlier in the day.

After a long day I lugged two tired kids to the grocery store and when getting in the car I gave Anellah a piece of gum for being such a good girl and keeping her undies dry. She asked if I wanted some and I said no thank you. But she insisted, she tore her piece in half and gave me half. It made me smile all the way through my body, what a sweet and selfless little kiddo. It melted my heart.

Thank you, Lord, for these littles and please help me to remember when I'm impatient that they won't be this way for long!!

Live Every Moment

With young kids I feel like I spend my time one of three ways; ignoring them so I can get things done, entertaining them to make time pass, or cherishing the time we have together and really trying to make everything into a teaching moment. I suppose parenting is all about finding a balance between these three things but I really want to do more of option number three. Often I find myself just watching the clock half-heartedly playing with Anellah and counting down the minutes until bedtime when I can do what I want to do for an hour before we head to bed ourselves. This next week we're going to be spending a lot more time together since her daycare provider is going on vacation so my prayer is that I will use this time, cherish this time, and enjoy this time in the midst of everything else going on that I call "life."

It's taken me a week to sit down and write this, not that I haven't had time, but rather it's taken that long to sort out my feelings about the situation. Last Monday Anellah had three appointments in San Francisco at UCSF. My AMAZING friend, Nicole, offered to watch Capper so that just the two of us could go. I didn't even ask her to! I was dreading two things 1). Anellah having to put up with waiting rooms, doctors examinations, listening to Mommy and the doctors talk, and blood draws 2). What new information I might learn. Two of the three appointments went well and didn't include any real surprises. One appointment, however, left me frustrated and confused.

She was referred to the UCSF Hepatology (liver) Department from Children's Hospital Oakland where she had been being seen for her liver problems. Part of her genetic syndrome includes Hepatic Fibrosis (injury to the liver). Children's said they wanted continuity of care between those managing her liver and her endocrinologist. I hoped this didn't mean they were suspicious her condition was anything other than stable. I'm not sure what the rationale really was but the new Hepatologist, after reviewing her information, told me "sit down, we have a lot of talking to do" and proceeded to explain that he feels her liver condition is progressive. He feels she will either need a liver transplant or major surgery in the future, it's just a question of when. He had us schedule an ultrasound and liver biopsy to be completed within the next month and gave explicit instructions about her care (watch for bleeding, protect her from trauma to the abdomen, etc.)

Of course this is just another thing in the series of medical treatments and procedures Anellah will be experiencing for her entire life. But it resurrected a lot of the questions that I struggle with (some of them selfish questions) as I love this little girl. Questions such as:

• When will the new diagnoses end?
• How often will she be hospitalized? (So far it's been a few times a year)
• What will her health look like by the time she is an adult?
• What can we do now to give her the brightest possible future?
• Will she ever be able to live a "normal" adult life?
• Will she ever be privileged to experience parenthood?
• How will this affect our family?
• How much will we spend on medical appointments, missed work, transportation, parking...?

I suppose every parent has to grabble with the fact that their child's future is uncertain and out of their control. I keep reminding myself that there is absolutely nothing I can do to reverse the genetic mutation that is in Anellah's DNA, it is part of who she is! I also keep reminding myself that God has such an amazing plan for this little girl, He already displays pieces of it every day. Without the circumstances she has lived through, I have no doubt she would not be the same sweet child she is today. This morning at church there was another girl who was hesitant to participate and Anellah gently put her arm around her and walked her around the Toddler Room to show her all the toys, I'm pretty sure God is going to use that big heart in some big ways some day.

AND...as I wrote this Capper just rolled over for the first time.

Capper is 3 Months Old

3 months old, that's a quarter of a year already! He is doing all sorts of new baby things these days.

When we put him on his back with toys above him he will reach for them and even successfully grabs them sometimes! He is very curious in his surroundings and was even trying to grab the cap to a bottle today during tummy time. He's making different cooing sounds as he experiments with his voice.

He has also become a more predictable napper. At night he wants us to put him to bed rather than stay up and be held, how awesome is that? I just put him to bed and a lot of the time he falls asleep on his own, other times I have to go up and give him his pacifier but all in all bedtime is pretty easy. The rest of the night is a different story now that I've gone back to work. He wants to make up for his time away from me by nursing all night since he's not a big fan of bottles and only eats enough to get by during the day. I'm sure he'll get used to it though...things are bound to change now that I've typed this.

Isaac and Capper

Capper is enjoying spending time with his little Buddy Isaac who is 6 weeks younger than him. Isaac comes to our house on Mondays and Tuesdays while his Mommy is at work and I bring Capper to his house on Thursdays and Fridays. It is SUCH a blessing to be able to have a set up like that! When they're a little older I think they may even keep each other company. On Monday afternoons Anellah is here too and she loves having Isaac around. It makes her feel special when she gets to help with the babies and she talks about how there are "two babies" and "one Nella."

Bye Bye Buddy

This is Buddy.

He helped us drive our moving truck from Texas to California.

He likes to jump...

...and play.

But sometimes it's so exhausting...

that he just needs to kick back...

and get a manicure.

He likes to go on vacations.

He's an excellent babysitter...

and an excellent co-worker when he gets to come to work!

But most of all he's just a good dog. Buddy Crimefighter Royal, he's been an excellent pet. He's had his moments of being a terror but overall he's been pretty great. He's the most affectionate pet I've ever had, for sure which is why it's time for him to move on. Our home has been lacking Buddy-directed affection lately and we've found a perfect new home for him with a couple who live just 10 minutes away. She wanted a "bully breed" and he grew up with boxers, so Buddy (a pittbull/boxer mix) is a great fit. Not only did they come visit him here, Buddy and I visited them in their home too. He's moving in with his new parents tomorrow.

So long faithful friend, I'm glad you'll get some more attention and I'm glad our floors won't have nasties tracked in from the back yard constantly. Oh and I look forward to dog-sitting you when your new parents go out of town.

Every Day's a New Day!

I am so thankful that every day we get to start over. As I told my friend yesterday, "Today is an, 'I really am TRYING to be a patient and fun Mom' kind of day." I woke up this morning with the opportunity to start over and since my kids are young they don't hold grudges when I get impatient, for them every MOMENT is new.

Anellah still LOVES her new preschool and loves riding the bus too! (Yes, that's me in my pajamas) Her teacher is great and says that she is "very loved" by her peers.

................ And that's as far as I got writing this post before I was interrupted by a baby who had been fussy for three days. How can this guy be unpleasant though?

Bouncing Capper in the Moby wrap while trying to type...this was minutes before he broke that necklace

And there are some breaks, like when Anellah decides to "read" to Baby Capper.

Well, that's all for now, time to go pick this crazy kid up!