Wednesday, December 30, 2009

Tuesday, December 29, 2009

Christmas in Philly

Just a super quick update because I have been very much lacking in my blogging since we arrived on the East Coast. It is freezing (27 degrees or something ridiculous like that!?!). We have been having a great time in Philadelphia with my parents, my sisters & all of the families .. it has been filled with lots of eating, relaxing & just good family fun.

A NORMAL holiday & it feels good!

I don't have my Verizon card so I can't upload pictures from my laptop from our time here but I have some great shots to upload once I get home (or get somewhere with wireless internet). Jim went back to California yesterday & the girls and I fly on Saturday.

I can't describe how wonderful it has been to just have this Christmas be so .. how shall I put it? ... "hospital-free"!

Hannah & Lily are sound asleep in the room that was mine for 17+ years. Same furniture & all ... life is good ... thank you, Lord!

All the best from the house where I grew up ...

Wednesday, December 23, 2009

California Christmas

We had a Christmas celebration with our Slazas family the night before we left California. I never got a chance to post pictures ... here are a few of my favorites.

The Slazas' are the most wonderful, caring, kind & giving family anyone could ever meet. They walked with us through the darkest of days and loved on Lily for months at a time when we could not do so. Thank you, Lord, for the treasure of their love & friendships!!!

Lily with her Mom & her "Auntie Mom" (what she calls Kim .. so sweet!!)

Sweet Katie with the girls that she loves so much & babysits for regularly!

NIH Appointment

We all made it to the East Coast on Sunday without any problems despite the 20" of snow that arrived on Saturday. It was a whirlwind trip to the NIH. We got to the Children's Inn about 7pm on Sunday - ate, played, watched Survivor & went to bed. Hannah & I got up early to be over at NIH for her appointment. Her biopsy was at 10:30 & Hannah did great. Seriously, you'd think she was on her way to Disneyland the way she handles it all. Just smiling & waving to me as she goes off on the gurney to the OR. Waking up from the anesthesia was another story but after some lunch she is doing fine. Not even really complaining of much back pain. The results from the biopsy take about 2 weeks to come back.

We did see her doctor at NIH & he is very encouraged by her progress. He told Hannah "officially" to go back to school ... & to send him the report cards :-)! So sweet. He is starting to cut back on the immune suppression medication that she has been taking for the last year. We will slowly taper this drug over the next several months. Hopefully Hannah will be able to maintain her blood counts without needing the medication. Her white blood cell count was down a bit but her platelets & hemoglobin was up (55k platelets, 9.4 hemoglobin). Truly, a miracle to see these kinds of numbers with Hannah's name at the top of the paper!

Before we left California, Hannah & I spent an entire day at her school visiting what will be her class for the 2nd half of 2nd grade. Her teacher, Miss D, is a DREAM. She is truly a perfect fit for Hannah. I am so thankful!!!!! She is kind, caring, intuitive, funny & believes in giving hugs :-)! Hannah loved her & seemed to feel very comfortable .. I know it will all be a huge transition but I feel really good that Miss D is going to help ease Hannah's transition back to "real life".

Right now we are at my parent's place for Christmas. My younger sister, Miriam, & her family are driving from Indianapolis to join us all. A mini-family reunion will be happening here.. all of us are looking forward to JUST BEING TOGETHER! Truly a miracle after what this year has been.

All God's best from my parent's place --

Wednesday, December 16, 2009

The Latest

Here is the update on Hannah's health:

* Bone Marrow Transplant is still officially on hold. Hannah has gone without a blood or platelet transfusion since the beginning of October -- this is huge!! If she can remain "transfusion free" she will not need a bone marrow transplant. What an answer to sooooooooo many prayers! Thank you, Lord!!! Last December she was getting transfusions at least once a week, sometimes more frequently!?! If her bone marrow fails again it is my understanding that she will go right to transplant. Her donor in Europe is "on hold".

* Hannah's counts are holding steady. White blood cells 5.3, Hemoglobin 8.5, platelets 45K. ANC is 3,000! These numbers are so encouraging!!!!! Truly a miracle!

* We fly this coming Sunday to the NIH for Hannah to have a follow-up bone marrow biopsy on Monday, 12/21. The biopsy will tell what is really going on at a cellular level with Hannah's body (the bone marrow is the "factory" making red / white cells & platelets).

* We just got the OK, via email, from Hannah's NIH doctor, that she can go back to school in January!!!!! Yes, you just read that right: HANNAH CAN GO BACK TO SCHOOL .. GO BACK TO NORMAL LIFE ... GO BACK TO FRIENDS .. GO BACK TO THE PLAYGROUND!! Jim & I are working with the principal of her school to find the best possible teacher for Hannah. It will be a huge transition for her!

* Hannah DOES NOT know that the doc has approved her going back to school (so if you see her at the Fusion Christmas party, PLEASE DO NOT SAY ANYTHING!!!!). We are "working the conversation" with her so she can start adjusting her mind to the idea of going back to school in January.

Here are some pictures from life at home.

Things have just been normal for us & honestly, it is emotionally overwhelming. Why? I really don't know. I guess all the emotions I could not let out during all those months of hospital stays & endless clinic appointments have finally caught up to me.

Happy girl playing play dough this morning in her absolute favorite pajamas (she calls them "zip its" b/c they zip up. And yes, I realize I needed to wipe her nose!

Hannah at Jenna's 8th birthday party this past Saturday. A "Girl's Rock" party .. so fun!

What a sweetie pie!

Two sisters camped out together in the guest bedroom ... I love how their arms are in the same position!

Out for a walk while Hannah was having school at home with her teacher.

She is a total cheese .. appropriate that she is eating Cheese Puffs "Nack, Nack" (Snack).

All God's Best from HOME --

Friday, December 11, 2009

Happy Hanukkah!

So, I am Jewish and a Christian.

I know, for some, that sounds like a complete oxymoron. But Jesus himself was a Jew and I know Him as Messiah.

Jim is not Jewish but it is has become increasingly important to us to make sure our girls know the Jewish heritage of our family.

My dad escaped the Holocaust. He was on the last train leaving Austria in 1939 that allowed Jews to willing leave the country. From Italy he took a ship with his parents to the United States. They arrived in NYC in October 1939. He was 2 years old.

My dad instilled in my sisters & I a love for those that worked to save the Jews during World War II. Corrie ten Boom is my hero .. if you have not read her book, The Hiding Place, it is a must read. She & her family (all gentiles) hid Jewish people in their Dutch home during the war. Except for Corrie, her entire family died in the camps once they were caught hiding Jews.

All this to say .. we celebrated the first night of Hanukkah tonight. Nothing major because I still don't feel great but it was a miracle to light the Menorah with our two precious miracles.

Both of my daughters are walking miracles. Hannah because of all that she went through to live through this past year & Lily, for so many, many reasons!!!!

I am thankful to the Lord for all He has done to preserve our family.

It has been a very rough year but we have so much to celebrate!

Each day is a miracle ... embrace the life you are living!!


P.S. On a separate note, Drew went home from Children's Hospital Boston -- Christmas tree is up at his house. What a miracle for him & his family tonight!! And, Ethan's bone marrow has "engrafted" with his donor's marrow!! Ethan still has many things to get through at City of Hope but, thank God, his body is on the right track! What a gift for his family tonight!!


I completely forgot to mention that Hannah got her ears pierced this week!!!!! She was so cute! She danced around Claire's afterward singing (well, practically yelling) "I GOT MY EARS PIERCED!!!" The lady at the store said, "It is so nice to see someone so genuinely excited about getting their ears pierced." She was very sweet ... if only she knew that this was the LEAST traumatic thing Hannah had been through in the past 12 months. Here are some pictures from our outing at Claire's:

Thursday, December 10, 2009

Been Sick ..

* I feel miserable. Ear ache. Sinus headache. Blah, blah, blah.

* As a side note, I'd like to mention this: KAISER ROCKS! I love our health insurance - called at 4pm today; got in at 5:30 for appointment; picked up prescription by 6:15 -- unbelievable. Forget Obama-care, can we please have Kaiser take over the entire national system? They've got it right. Not to mention that without Kaiser, we'd be bankrupt because of all Hannah's hospital stays, tests, ambulance rides, etc.

* The girls are doing great.

* Lily is just hilarious. Seriously, I love her sense of humor. She laughs & her laugh is just contagious to everyone! I am too tired right now to think of a funny story ... but there are many.

* Hannah is happy at home. We are debating about putting her back in school in January. If the doctor will give approval, I think it would be really good. I am going a bit crazy being home 24/7 with both girls. I am thankful we are home, don't get me wrong, but I need space and I am not getting any right now. All good problems so really I am not complaining ... just ready to see if we can make some adjustments (of course, only if the doctor is sure it is OK for Hannah's health).

* We've been doing normal things & just happy to be home. Christmas tree is up. This is the first year since we have had Lily that I put decorations on the tree. I cried putting up the chinese ornaments we bought in China ... and that my sister gave me about 4 years ago while we were waiting. Amazing that our China baby is HOME!! :-)

* I am working on getting our Christmas cards sent out. Long story but I did two total different versions -- b/c I printed one set & then didn't have enough. So some of you are getting one version & some are getting another ... no reason why some got one card & others got another. I am just completely disorganized this year but glad that life is normal enough that at least a card is going out :-)

* An electric blanket & Costco-fake-UGG-boots are a good thing this time of year in Southern California when the temps dip into the 50's during the day & 40's at night. I am such a wimp with the cold!!!!!! How could I have really grown up on the East Coast?!

* Pray for our friends recovering from bone marrow transplants because of Aplastic Anemia: Drew (at Children's in Boston) and Ethan (at City of Hope here in LA). These boys have been through so much but are thankfully recovering ... pray for their moms: both named Jennifer. I know the feeling of wanting to climb the walls in the hospital room after weeks & weeks of staying in-patient!

OK -- off to my warm cozy bed!

All God's best from Southern California,

Saturday, December 5, 2009

Lily & More

First, the "More":

* Hannah's blood counts remain stable & have been trending upwards. We took a trip to Kaiser on the evening of December 1st b/c Hannah wasn't feeling well. Not sure what was going on but she just was not herself & we wanted to get her blood levels checked to make sure everything was OK. Her blood counts came back higher than they have been in a year!!!!! Not normal yet but higher than they have been. December 1st was the actual anniversary of her going into the hospital last year. To say the least, I felt so sick to my stomach making the drive to Kaiser Fontana. Talk about a "WHAT IS GOING ON NOW?!" kind of feeling. It just felt like the whole nightmare was starting over. A complete relief to get her blood counts back & have positive news. I am so grateful to the Lord for this time at home & her being better than she was a year ago!

* There is a blood drive this coming week specifically for a little boy, Noah, that was diagnosed this Fall with the same thing that Hannah has, Aplastic Anemia. What better gift can you be giving this Christmas?? Hannah has probably had close to 100 blood & platelet transfusions since last December. Blood and platelet transfusions are what sustain life for these kids while waiting for their bodies to either respond to treatment or get a bone marrow transplant.

If you can't donate blood but have not signed up for the bone marrow registry, please stop by so you can register for the bone marrow registry. All it takes to register is a swab of your cheek. Noah's family is aggressively looking for a bone marrow match. A bone marrow transplant is the only CURE for this disease.

Here is the information: Blood and Bone Marrow Registry Drive on December 9th at 4630 Wheeler Avenue on the corner of Baseline Road and Wheeler from 8am to 2pm. To donate blood, you may make appointments by emailing mkech@roadrunner with your name, phone # and preferred appointment times. They will be taking appointments in 15 minute increments with the last appointment at 1:45pm. No appointment is necessary for the bone marrow test.

Now, on to the most precious baby from all of China, LILY:

We received a letter MONTHS & MONTHS ago in the midst of all the hospital stays with Hannah. The entire letter was in Chinese so I didn't know who the letter was from. I put the letter aside & forgot about it. Friends just translated the letter and it was from Lily's foster mother in China. A beautiful letter. I do believe that Lily was very loved baby for the first 53 weeks of her life. I don't know how she could not have been considering how she has always been so full of joy & engaging with others.

While Lily was in foster care there was another adorable baby in the same home, Meredith, now living in Colorado. Meredith's mom & I are planning a trip in January for our precious China girls to reunite. It is such a special gift that Lily & Meredith have each other from their beginnings in China. A letter also came for Meredith's family ... Margo, I promise I will figure out which one is your letter & send it this week!

I am sending a letter back to Lily's foster mom with some pictures that I put together of Lily these past few months. Here is a look at the other pictures I am sending.

Truly, I got the prize with this precious girl ... thank you, Lord!!!

Friday, December 4, 2009

Happy Birthday to a True Gem in This World

Ashlynn's Mom.

Darryl's Wife.

Our neighbor.

Our friend.

A treasure to our hearts!

You are an inspiration to so many as you fight for each day to be the Mom that God created you to be.

We love you, Shay, & wish you a very Happy Birthday!!!!




Tuesday, December 1, 2009

Uninhibited Hannah

My dad sent me the sweetest email on Thanksgiving.

I won't post his letter (because of the ongoing investigation .. ha, ha) but it is just filled with encouragement & love. In his letter he mentioned the "gorgeous uninhibited Hannah" .... & he is so right!

I just came across this video tonight from a trip we took to the Bahamas in the Fall of 2007 with our dear friends, Rick & Satu. Hannah was dancing away on the deck of the ship.

When they say dance like no one is watching, Hannah certainly does just that -- enjoy!

She is a treasure!!!