Full Day at the Clinic and Lily's First Ad

OK, this advertisement says it all but oh my goodness, is she not the cutest thing?!

Hannah & I got to the clinic at 8:45AM & walked out at 5PM. While she got platelets she slept, thanks to pre-medication a-la-benadryl! I got caught up on some paperwork & things. Hannah was awake by the time she got to the red blood cell transfusion & for that part, she watched a movie, played on my laptop & hung out while the blood went drip, drip, drip into her precious little body. We got to visit with a really sweet 9th grade girl, Morgan, who was at the clinic for her final chemo treatment after 8 months of therapy. What a great day for her -- congrats, Morgan!! We are so happy for you & your smile is just beautiful!

When we got Hannah's numbers today, her white blood cell count had gone up from 1.5 to 1.7 all on its own without any nupegin shots or medication. It was so cute because Hannah was so excited she was literally singing "my bone marrow did it, my bone marrow did it! my bone marrow did it ... all by itself!!!!!!!!!" We agreed that maybe her bone marrow is actually going to decide to come back from vacation. That is certainly our prayer!!!

Dr. Horvath came in towards the end of our time at the clinic. She had just talked to Dr. Young at the NIH. Both of them were very pleased with Hannah's progress. Some days it is hard for me to see her as making progress since the recovery of Aplastic Anemia is SOOOO slow. Thankfully, according to the doctors, she is making improvements. We do not go back to the clinic until next Tuesday ... so it is 7 days of freedom from needles, poking, transfusions & all the fun!! :-)

There has been A LOT of drama in the pediatric unit of the hospital. I guess some of the management on the pediatric unit thinks that us moms were having a bit too much fun while living on the unit. They have now implemented some "rules" for the parents about not being in the hallway (hello ... our room has no window!?!), no signs on the doors (goodbye "Camp Hannah" sign), no going into other patient's rooms, etc. Several parents, including myself, are literally about to cause a revolution. We are calling a meeting with the top administrator at the hospital. Obviously he is not aware that some of the pediatric management team thinks they are running a morgue rather than a pediatric unit. This week should be interesting but I do feel our voices will be heard. The way the management is acting, you'd think us moms were having water gun fights in the hallway ... the whole thing is just so insane!?! Like any of us would choose to be there if our children's lives didn't absolutely depend on it!!?!?!

I will say this: Kaiser Fontana has the best nurses & we truly, truly love them!!! If we have to go back to the hospital, I know Hannah will receive wonderful care and we will both have love & support from the nurses. There are no words for how truly thankful I am for the love & care that Hannah gets. I wouldn't have it any other way but God has blessed us on this journey in ways I just never could have expected (volunteers, new friends, support, nurses, etc). He promises to do more than we think or imagine & I can honestly say I have experienced His grace during this trial in ways that I just never could have imagined.

Thank you, Lord, that your love never ends, never fails & never leaves us forsaken!!!! You are an ever present help in times of trouble - I just can't imagine going through any of this life without Your abundant grace!

Pictures

Here are pictures of Hannah from time hanging out on the driveway & a picture of her with her Be Better Bunny .... thank you, again, Jeanne!! Lily would love to get her hands on the wheelchair & accessories. It is hilarious but Hannah is very protective of Be Better Bunny!

One year ago tonight Hannah & I were flying home from the East Coast. On the flight home I started to show signs of Bell's Palsy. I remember telling Hannah to say goodbye to Mommy's smile because part of my face was about to "go to sleep" for awhile. Literally, I remember her sitting in the seat next to me on the flight waving goodbye & saying "bye smile, see you soon!" Oh the memories ...


Tomorrow we will be at clinic all day for her transfusions. I suspect Hannah's numbers are very low -- she is pretty pale. My mom is dropping us off & will get to enjoy some peace & quiet while Lily goes to hang out with Aunt Kim. :-)!! I am so thankful for my Mom & that she is honest with me that she is "open to a break". She truly is the absolute best ... have I mentioned that already on this blog? Ha.ha.

Thankfully, Still Home!

Hannah is back to eating a mostly regular diet at this point. We are just introducing milk stuff & her intestines seem to be handling everything just fine. She has not had any signs of a fever & we have been home for 2 1/2 weeks straight!! Her hemoglobin is pretty low, so tonight she was very tired. She was scheduled to get red blood cells on Friday but the doctors really want to stretch things in between transfusions because her iron level is elevated (this is a side effect from so many transfusions!). So we are scheduled to spend all day Tuesday at the clinic for her to get platelets (2+ hours) and red blood cells (4+ hours). It will be a long day but if she can make it until Tuesday, we will only be going to the clinic once a week for her to get checked & get transfusions. Yeah for only once a week ... that is a huge change for us in the right direction!

Hannah was riding her bike last week & fell while riding around a car that was parked blocking part of the sidewalk. She has a huge bruise on her leg -- HUGE!! Dr. Horvath felt so bad that she had ok'd Hannah for bike riding. Now she has suggested that Hannah just stick to dancing and save bike riding for when her platelets are a lot higher.

Hannah is enjoying the tether ball in the backyard & sleeping in the guest bedroom with Grandma every night. My mom is here until Thursday. It has been so great to have her here during this time when we are just home hanging out. Tomorrow we are going for sushi with Kim ... yummmmm!!!

I feel like I am holding my breath until we have to go back to the hospital ... but maybe we just won't have to go back. Maybe this is our new normal - going to clinic once a week & being home. Wouldn't this just be so wonderful?? I am just enjoying each day & if we have to go back, we have to go back. For right now, I love being home. Love putting Lily to bed each night. Love that she is such a sweetie & just lays down when she is done being rocked. She practically dives in the crib. I don't know another baby as easy as she is. How I won the lottery twice with 2 wonderful daughters? ... I will never know!

We had the social worker out last week to do our post adoption follow up visit. Lily was just as charming as every & worked her magic as her easy, happy, fun little self. She couldn't have been any cuter!! Despite all the turmoil of the last 4 months, it is so obvious that God's grace is upon our Lily. She is bonded & attached ... and happy & joyful. We are so thankful!!!!!

I have been making some trips out to the hospital to see Chance & Virginia -- he is there right now for his last round of chemo before going to City of Hope for a bone marrow transplant. He is such a special 10 year old guy! He is a fighter & if anyone can beat Stage IV, Ewing Sarcoma, it is him!! Our prayers are with Chance as he fights hard to overcome this disease. He is a joy to know!

We went out to the hospital this evening to decorate another patient's room, Daniel. Today is Daniel's 17th birthday. He is fighting Stage IV cancer & in the hospital for chemo treatments. I just can't imagine being in the hospital for my 17th birthday - let alone for something so serious. Chance's mom, Virginia, had tipped me off to Daniel's favorite movie so we made sure we got that for him.

This week a friend of mine from the "China-blog-adoption-community" is expecting her referral from China after waiting 3+ years. I have been praying for her baby girl for years somewhere in China & I can't wait to see her face! Follow me this week for her journey of a lifetime: www.addingasister.blogspot.com

OK - last but not least, my sister emailed me tonight & said "for the love of all that is holy, post some more pictures." So, Rachel, here you go! Stop harassing me & just come visit!!!!!!!! This is ridiculous :-)



These first 3 pictures were taken at a photo shoot just 2 weeks before Hannah got sick. These are from November 2008 ... just before we went away for Thanksgiving!

She is so adorable ... thank you, Lord, for this sweet girl!!

First professional photo shoot for these sisters together .. what a precious moment!

After camping out at Aunt Kim's for a long time, Lily is part Italian. She can clearly say "pasta" & enjoys every bite!!!

More time in the swing with her adorable outfit on!!! March 2009

March 2009 in the garage of our house. A little bit blurry but I just love this picture of her ... what sweet lips!!

Dad & his girls on the driveway, March 2009.

Jeremy Camp

He is my all time forever favorite Christian artist and I got to hear him live tonight!!! I have had my calendar marked for over a month hoping that we'd be out of the hospital on this night .. thank you, Lord!! Tickets were only $10 & my Mom & I stayed after so we could meet him. I was able to personally thank him for the way his music encouraged my heart so much during our wait for Lily (and of course, now during this trial with Hannah's health).

We go to the clinic in the morning for Hannah to get red blood cells -- then Jim & I are off for a night away from home.... thank you, Grandma!

Allow Me to Induldge .....

Aunt Rachel wants to see some pictures of Lily ...enjoy!!

The adorable "Lily" outfit & headband are available at www.shopatglam.com. Great site, awesome gifts & amazing women that run this boutique!!! Thank you, again, Bridgette R., for such an adorable shower gift. I am so glad Lily fits in this now!

13 Days & Counting ...

This is the longest we have all been home since Hannah got sick on December 1st. I am really getting very used to JUST BEING HOME!!!!!!!!

Hannah had a great, fantastic, wonderful sleep over at her friend's house. Thank you, Alyssa, for being such a dear friend to Hannah!!

My mom took Hannah to the clinic yesterday (Tuesday) for Hannah to get platelets. The nurse was going to use her PIC line but when they tried the lines, neither PIC would work!? So, Hannah had numbing cream placed on the area of her port & she had to have her port accessed for the first time in a few weeks. My mom said she did so great & was so brave!! It was not without tears but Hannah did really, really well & held perfectly still when it was time for the needle to be put in her port. Thank you, Lord, for my precious girl!

I went to bed at 7pm tonight & just woke up. The past few nights Lily has been waking up in the middle of the night. I know it is just teething issues but all our "late night" parties have made me very tired. Ironically, I am awake now & she is sound asleep.

We had a very special delivery today from "Be Better Bunny". Hannah has been getting post cards for weeks from "Be Better Bunny" ... & today, she arrived via FED EX! This bunny from Build a Bear is like no other... she is totally dressed up like a patient with many medical details beyond what you can buy at the store PLUS there is an IV pole added to the wheelchair for the bunny with filled IV bags ... very much like what Hannah had in the hospital. Too adorable!!! Tomorrow I will try to post some pictures! Jeanne, your creativity is just amazing!! Thank you so much for all your thoughtfulness & also for Lily's bunny - she loves it!

Wednesday morning I go to the dentist because my teeth are basically starting to fall out. I thought I had something stuck in one of my teeth -- but no -- it was part of my filling had fallen out so I was feeling the jagged edge of the lost filling. Lovely, I know. I lived in the Ukraine years ago, so I am thankful that I have been referred to a great dentist that will not be offering gold fillings.

Of course, gold is Hannah's favorite color ...

Hannah's Not Home

Hannah is not here tonight -- she is at a friend's house for a sleepover!!! Can you believe that???!!?

Yes, I know the other mom's out there with kid's with very low counts will think I am crazy but no one was sick at Alyssa's house. I know, I know - but Hannah begged and I caved.

It was so cute to see her excited to pack up her bag & do something so "normal" for a 7 year old girl!

Although I was very happy for her, with all she is going through, it just doesn't feel right not to have her here with us. Lily & I will pick her up in the morning!

Thank you, Anthony, Jackie, Alyssa & Carina for agreeing to have Hannah over tonight! This is her first sleepover in a very, very, very long time!!

Six Months Ago Today ...

.... Jim & I were in China meeting Lily.

This was the day we had waited, hoped & prayed for ... for 3+ years.

Here is brief video of my first afternoon with Lily. She wasn't very happy to be with me (at all during our time in China) and really only wanted her Daddy from the very first day until when we got home. Jim was the main care giver while we were in China since she was only happy if he was near her or holding her.

Now, her most frequent word is "Mom". Truly, I can't see how she could be any more attached to all of us - even Hannah, despite all of Hannah's hospital stays. Lily is adjusted & thriving in every single way.

She is the picture of God's amazing grace!

Thank you, Lord, for the gift of adoption & for the incredible gift of sweet Lily!!! It is so hard to imagine how her life began in this world & that she is now our treasured baby girl!

Nice Time Away & Transfusion for Hannah

My mom & I had a wonderful time doing what I enjoy most: eating, shopping, sleeping, movie watching & relaxing!!!!! A very nice 24+ hours -- yeah!!!!

We got back with enough time for Jim & I to load up the car & take Hannah to the drive-in movie theater. The first time for Hannah! It was very impromptu & fun for Hannah to go "see a movie" without actually "going to a movie theater", since her counts are so low. Going to the drive-in was the idea of nurse Janice from the clinic .. such a great idea, thanks!!!

My mom & I went to the clinic together on Friday with Hannah & Lily. Long story why we all went but I am very glad we all went together! We got to have time at the clinic & lunch at Sizzler with Chance, our 10 year old friend from the hospital, that is fighting cancer. He is THE MAN & we all just love him so much!!! He is about to go back into the hospital for his last round of chemo before his bone marrow transplant. Please pray for Chance -- he is such a wonderful, thoughtful, funny & smart boy!!

Jim had to take Hannah to the hospital on Friday night for a transfusion of red blood cells. In the afternoon on Friday, the clinic called to say Hannah needed red blood cells & couldn't wait until Monday (like we had expected). Good thing we had gone to the clinic to check her numbers before the weekend!! Hannah was very pale & tired so it made a lot of sense that she needed red blood cells. They went to the hospital to get the transfusion because the clinic is only open until 5pm & there is no way her transfusion would have been finished by 5. It takes at least 4 hours to get the red blood cells. So, Hannah went to the hospital but thankfully, it was an "out patient" visit even though she got admitted into a regular room like when we stay there overnight. She was back at home by 10pm Friday night ... thank you, Lord!

All God's best from H-O-M-E .... I love this place even if the oven is broken, the washing machine acts crazy & the garage needs to be cleaned up. It is just soooooo nice to have Hannah home & all be here together!!!

Who needs an oven anyway? :-)

Grandma is Here & We Are Still Home!!

My mom arrived on Wednesday night. We are all so happy to have her back - where she belongs, thank you very much!!

Tomorrow she is taking Hannah to have her blood counts checked. Most likely Hannah won't need a transfusion until Monday but we won't know until her counts come back (about an hour after her blood is drawn). I am so thankful to be able to stay home with Lily while my mom takes a shift of "clinic duty".

This evening Jim & I took a walk with the girls. Lily enjoyed time in the jogger stroller and Hannah rode her bike for the first time since November!!! Oh my goodness, what joy to see Hannah on her bike & so happy to be out riding!!! I was mad at myself for not bringing my camera but I guess I can't capture every moment of my children's lives on camera ... or can I?

My mom & I are going on a brief getaway Friday night / Saturday. Just the two of us ... much needed as I have probably aged 10 years in the last 3+ months! Ha.ha.

Thank you to everyone that continues to pray for Hannah & continues to encourage us with cards & love. We are truly so blessed in every way.

Please pray for Hannah to remain "infection-free", "fever-free" & "pain-free" .... and filled with her happy, joyful spirit!!


All the best from HOME --

Just Being at Home & Two Days in a Row at Clinic

All is well here @ HOME! It is so thrilling to JUST BE HOME!!! Really. I have never been so happy to do laundry, dishes, grocery shop, etc! This past weekend was just us girls since Jim was out of town for a board meeting. The three of us had a great time being together & staying home!! The furthest we went was walking 3 houses down to visit our beagle dog, Abbie. Hannah wanted to see her & after less than a week at our neighbors house, she is a different (much more obedient) dog!! Thank you Chuck, Debi, Tammy & Brandon ... I can't thank you enough!!!!!!!!!!

We went to the clinic yesterday for Hannah to get platelets but ended up coming home to return early (well, early for me .. 9:30!) this morning so Hannah could receive fresher platelets (thank you, Dr. Horvath!). Yesterday, we got to see Jacob & his sweet mom, Melissa! Plus, both days we got to see Chance & Virginia. It is so nice for me to have connections with other moms that are also going through health challenges with a child. What a blessing! Today Virginia surprised me & brought Mexican Shrimp Cocktail ... oh my ... it was so delicious!! Thank you, Virginia!! As you saw, even Lily loved it!

Hannah's numbers are still dangerously low but we are seeing small, cellular level positive signs (for example, her reticulocyte count today was 1.1 - that is in the normal range where 3 months ago it was zero.) We just passed the 3 month mark from when we were at NIH for her to get the ATG treatment. Lord willing, the treatment she received will get her into remission but we are still months away from knowing if it worked.

Some of Hannah's numbers from today are as follows:
RBC: 2.84 (normal is 4.0 - 5.2)
HGB: 8.1 (normal is 11.5 - 15.5)
WBC: 1.4 (normal is 4.5 - 14.5)

Hannah has been having lots of fun here at home. She has certainly adjusted back to things & is very happy to be home even though she swore she wanted to stay at the hospital while we were there!? She has been watching American Idol over & over & even introduced her sister to the show. Hannah decided that Lily likes Scott the best because she got up out of her baby rocking chair to dance along to Scott's singing. SO cute!!

Lily is doing so great! I can't believe how she is thriving despite all the transitions she has been through in her 1st 18 months. It is so obvious that God's hand is on her life in a special way. Thank you, Lord!! She is such a gift!!!

I am one happy mom -- just enjoying the little things of home & my family more than ever before!


"O give thanks to the God of heaven, for His steadfast love endures forever." - Psalm 136:26

Happy Birthday, Mom!

My mom is just amazing! I don't remember a time when she ever made me feel uncomfortable, unwanted or unloved. She is patient, kind, loving & deeply caring. She was always there for me as a young girl & continues to be here for me to this day. She has always given advice but never forced her opinion. She isn't a "know it all" but most times I feel as if she does know it all -- if I have a question about a recipe, a medicine, an illness, a home improvement issue, I just call mom.

Welcome to the world of Medicare, Mom ... happy, happy 65th!! We can't wait for you to come back this week. Thanks for all the trips you have made to the west coast to help with everything. You were here with us when Hannah was born 7 years ago & you continue to be here at all times when we need you so much. Thank you, thank you!!

We love you & thank God for the wonderful mom / grandma you are to all of us!!

Saturday in Pictures

The Secret to Staying Home ...

pack a bag full of stuff when you go to the clinic. Not even kidding. I had the back of the SUV re-packed & organized for our potential move back into the hospital.

Hannah & I went to the clinic & thank you, Lord we do not need to go to the hospital!!!!!! I have never been so thrilled to drive in Friday traffic!!!

Hannah's numbers were pretty good. We go back to the clinic on Monday for her to get platelets & check everything else.

We are home for the weekend .. blinds are shut, phones are off. So happy to be here!

Homemade soup is on the stove, Hannah is singing her heart out to some music & Lily is playing legos at my feet -- I take that back, Lily is stuffing my shoes with legos. Humm?!

Still home but maybe not for long

We are home. I am so happy to be here but I have a gut feeling we aren't here for long.

Hannah is having some symptoms that seem to me like "C-Diff". She had this back at Kaiser Sunset.

Oh my goodness -- my heart is just sinking right now @ the thought of going back to the hospital after just being home since last night.

We go to the clinic tomorrow to have her checked & possibly get admitted.

I just talked to one of the nurses on the floor & they are going to "reserve" Hannah's room #1303 if we have to come back.

The fun over here just never ends....

Surprise Party on the Way Home from the Hospital...

Hannah is able to keep her medicine down .. yeah!! She also has not complained of leg pain since earlier this morning. She ate a regular diet today & seems to be doing just fine with things.

We left the hospital at 4pm & surprised Hannah by meeting some friends from her school at Friends To Be Made. Some of the girls made dolls & then we went to the food court for some cake. Hannah has been thinking about that Costco cake for a very long time now!!!!!!! :-) She was very overwhelmed by everything when we got to the mall...I guess it was a bit much after living in a hospital for 5 weeks but I am still glad we did it! Hannah has been wanting to go to Friends To Be Made for such a long time .. and the girl has no dolls ..ha,ha,ha!!

Thank you to our friends that met us & celebrated with us!!! We are so thankful for the many, many people that have supported us & encouraged us during this journey.

Lily joined us after the party & now we are all home -- if you don't hear from us it is because I have locked the doors, closed the blinds & turned off all the phones!

Please keep Hannah in your prayers as she is still at great risk for infection ... hopefully we will be home for a long time! Pray for her little bone marrow to get back to work!

All God's best from H-O-M-E ...

"My soul shall be satisfied as with marrow and fatness; and my mouth shall praise thee with joyful lips: When I remember thee upon my bed, and meditate on thee in the night watches. Because thou hast been my help, therefore in the shadow of thy wings will I rejoice" - Psalm 63:5-7 (KJV)

We Have Discharge Orders ...

Hannah is watching a movie, I am packing up the room & WE ARE GOING HOME!!!!!!!!!!!!!!!

Thank you, Lord!!!!!!!!!!!!!

And in walks Scott Connell ...

Thank you, Scott, for making the surprise trip to come see us & pray with us!! Truly, I felt so honored & blessed by your visit!! Scott, you looked awesome & I am so thankful you used some of your energy to come visit us & check on our needs!

Scott is the dearest man that has worked as the Pastor to Adults (50's+) at our church for years. I haven't seen Scott in many months because he has been sick with Leukemia, which started before Hannah was even sick. When Scott walked in today, Hannah was asleep in her bed & Lily was sitting in the pack-n-play "coloring". Scott had never met Lily so at first he thought she was another pediatric patient staying here in the room with us. It must have looked like Kaiser packs us in like sardines because we have 2 hospital beds + the pack-n-play + a million things to keep us busy. Let's just say, there isn't a lot of "room" left in our room! :-) After I picked Lily up out of the pack-n-play we had a good laugh about her being my daughter & not another patient in this room!!

The Good News for Hannah: The GI doctor discontinued all of the nutrition through the IV. The only two issues keeping us from leaving the hospital are (1) pain in Hannah's legs & the morphine that she is requiring regularly and (2) the ability to take her medication by mouth vs. IV. The medicine is a heavy duty one (cyclosporine ... that supresses her immune system). It is in liquid form but really upsets her stomach. If she can handle the medicine & get off morphine then I hear we will be discharged ... as soon as tomorrow if we can get this stuff under control.

Oh my goodness ... I am giddy at the thought of packing up this room & getting out of here!!! Hannah is sad to leave the hospital (do you think I have made things "too fun"?). She loves the nurses & staff but I assured her that with Aplastic Anemia, most likely we will be back at some point. I can't even go there in my mind ...hopefully this time we break our record & have a long stay at home!!

Lily is back at Kim's -- she had been here at the hospital with us since Sunday. The past 2 nights I had her sleep in the pack-n-play instead of in the bed with me. Once she was asleep I put blankets over the pack-n-play & put my ipod player right near her. Last night she slept 12 hours straight -- so obviously "Plan pack-n-play" worked very well!!! She is such a pumpkin & truly such a joy to our hearts each & every day.... more like each & every moment!! Thank you, Lord, for the joy this baby brings to all of our lives -- especially during this difficult time!

Please pray that Hannah will have a good attitude about leaving the hospital (I know, pathetic but she loves the people here!) and pray that she can hold down the medicine & stop needing morphine.

All God's best from #1303 --

PS -- Chance, our dear 10 year old friend from here on the Peds Unit was discharged today. We love him & his mom, Virginia. We will miss them here but we are so happy they got to go home! Chance LOVES Lily. It is just adorable & Lily loves him right back. She will walk right across the hall & head for his room if she knows he is in there ... too cute!!!

Chance, we are praying for you & so proud of the fight you are putting up! Cancer sucks but YOU ROCK!

And Just Because I Am Still Awake ...... One More Picture

Monday in Fontana ... Week #5?

The picture of Hannah & Lily together in the hospital bed is one of my absolute favorites ... so sweet how they are looking at each other. Just a priceless snapshot.

Hannah's numbers were very low today - her ANC was 243 (wbc .8) so today she got Nupegin. Tonight she had HORRIBLE pain in her legs (from the Nupegin). Around 8:20 she started screaming at the top of her lungs in terrible pain. It lasted for a few minutes until the nurse could get the morphine & get it into Hannah's line. Oy ... what a few minutes that was!!!! I felt so bad for Hannah. Twice again tonight she has had to have morphine .. basically every 2 hours for her leg pain.

Good news: Hannah is not having any stomach pain (thank you, Lord!!!!) & her diet was advanced to full liquids (versus clear liquids the past few days) and lactose-free soft products (pudding, etc). Also, the GI doctor cut down her IV nutrition to just 12 hours a day vs. 24/7 that she has been getting for the past 4+ weeks. He also mentioned that this might be the week for going home ... I think I heard him say Thursday but I was so excited maybe he said Wednesday ... maybe it was Tuesday?! Nah. Who knows!?! Anyway, I think we might actually break out of this joint some time soon .. I am so, so, so, so, so ready to G-O!!!!!!!!!!!

Both dogs are in "foster care" with neighbors until Hannah is well ... or until our neighbors totally hate us! Thank you Chuck & Debi - just call us when you can't take it anymore but pleeeaaassee know how totally thankful we are!!! It was just too much for us to handle right now .. some days just remembering to get the mail is too much.

Today Hannah had some special visitors ... my good friend from Palm Springs, Brigitte came to visit and brought loads of gifts. Thank you to her precious Kayla for being so generous to Hannah!! Brig - it was sooo great to see you!!! You are such a cherished friend!! This afternoon, Cheryl & her daughter, Lindsay came to visit. They enjoyed painting nails, doing a bit of art & watching movies. They all also babysat Lily while Jim & I met with the Chief of Pediatrics to discuss our issues we are having with one of the doctors. It was a good meeting with the Chief & I think our request will be honored. Thanks Cheryl & Linds .. so great to see you -- we love you!!!

Lily slept over Sunday night & spent all day Monday with Hannah & I here at the hospital. I was going to have Lily go home with Jim or to Aunt Kim's tonight but Hannah really wanted her to stay again .... so here I am camped out with the 2 precious girls. Hannah is still awake doing artwork for the patients across the hall (yes, she is the in-house artist). Lily went to sleep around 10pm ... and is snoozing away in the pack & play next to Hannah.


PS -- I could have sworn it was Tuesday night & I completely panicked that we missed American Idol. It was a moment of real panic. Gosh, that sure is telling of our social calendar these days!!!

And in advance of tomorrow night: VOTE ANOOP!!!VOTE ANOOP!!!!VOTE ANOOP!!!!!!

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"Trust in him at all times; pour out your heart before him: God is a refuge for us." Psalm 62:8

"When I am afraid, I will trust in you. In God, whose word I praise, in God I trust; I will not be afraid." Psalm 56:3

Counting On God

Thank you to my sister's sister-in-law, Stephanie, for forwarding this great video. Such a great reminder that we can count on God today and not to worry about what tomorrow will bring.

Hannah had a terrible night Friday night because she had to have the ultrasound done on her abdomen & that makes her very apprehensive (for some reason she just hates having the ultrasound done!). Also, she was having awful pain in her legs ... requesting morphine more than once every 2 hours. Poor thing! And Aunt Kim was there to deal with it all .. and more!! I came home Friday & went to bed at 4pm & didn't really get up until 11am the next day. Lily & I hung out on Saturday but then Hannah really wanted me to come back to sleepover (her daddy snores very loud so she prefers me to be there at night). So I rocked Lily to sleep & then a neighbor sat at our house while I drove out to the hosptial & then Jim drove back. He & Lily had a great morning at home today & then he came to relieve me at the hospital. I am home now with the sweetest little one year old girl ever!!! We had a great impromptu lunch at Tios with Aunt Kim ... nice to just sit & visit without being in the midst of a "Lily-swap" or "hospital-swap".

We are having major issues with the doctor that covers Hannah's case during the times when Dr. Horvath is not on call. He gave us some wrong information yesterday & also cut Hannah's morphine dose in half without telling us. (hello!?) We are in the process of having him removed from Hannah's case but it seems easier said than done. We made our initial request last Tuesday & still haven't heard back. I am about to email an administrator at the hospital & see if we can get somewhere to make this change happen sooner rather than later.

Pray for the pain in Hannah's legs ... she is requiring a lot of morphine (3mg / 2 hours) and we certainly can't be doing morphine like that once we are home. Pray her stomach will tolerate soft foods & that she will be able to handle the oral medication (she has tried 3 times & thrown up twice from the medicine). Probably because she doesn't have enough in her stomach to balance the heavy medication. If she can be eating & taking her medicine ... then I think we might actually be able to come home! I am hoping we can exit the hospital this week! Hopefully ... but we will see!

Wondering the Plan

I keep thinking "what is the plan?" ... "when is Hannah getting out of here?". This week especially. I think I am just so D-O-N-E with this hospital stay. As I wonder about the plan, the Lord constantly brings to my mind the verse from Jeremiah that I love -- "For I know the plans I have for you" declares the Lord, "plans to prosper you & not to harm you, plans to give you hope & a future."

So I am focusing on that & just trusting the good plans the Lord has for us even though there is a big part of me that just wants a "road map" for the next several months (don't we all want that!?).

So, I am home this weekend. Hannah didn't have the luxury of packing up her stuff to come home for the weekend & just get away from all things hospital. Poor thing but she is such a trouper through all of this!! She had an ultrasound tonight so hopefully tomorrow we will know some more about her intestines. Aunt Kim was there while they did the ultrasound so I don't know how it went (since I was home sound asleep all evening!!).

Yesterday (Thursday) was the dreaded "needle change day" -- it happens once a week for the needle in her port. Hannah is such a smart cookie ... just before we were going to take out the needle she asked if they could now just use her pic line since she has a double PIC line (in her arm). And, yes, because they have cut back on so many of the anti-biotics, they were able to just use the line in her arm & didn't have to access the port in her chest.

For the first time in over a month Hannah slept on her stomach (which she has not been able to do because of the needle in her port). She said it was the best night of sleep ever!! So cute! The past 2 nights we have slept in the same bed together. Although it has not been the most comfortable sleep of my life (to say the least), I love listening to her breath as I go to sleep & being that close to my sweet girl. She is such a treasure & I am so privileged to be her Mom!

And to Aunt Kim, who is at the hospital tonight with Hannah-Hannah. I love that you love my girls like they are your own & I truly thank God each day for the gift of YOU!

All God's best from mi casa --

Did You Hear Hannah Screaming for Anoop?

Oh my goodness -- if you live near Fontana, you heard Hannah screaming her head off just before 9pm!!! I wish I had video taped her when Anoop was chosen to remain on American Idol. She went nuts!!! Nothing better than a great show on American Idol to help her enjoy the night!

Dr. Horvath & Dr. Young (from NIH) talked & we are not going to travel back to Maryland in March. I am so glad ... especially if we are just getting out of the hospital. Hannah has been having a lot of pain in her legs. Today she has had at least 4 or 5 episodes of major, major pain ... poor thing!! Both doctors think it is from the Nupegin that she is getting that helps to increase her white blood cell counts. Her white blood counts were at 1.8 today -- so that is better than the past few days.

None of the doctors are willing to sign off just yet & let Hannah start eating a regular diet -- they all seem nervous that food will reverse the healing that has happened over the last 4 weeks. I certainly don't want her condition to reverse so I am willing to wait ... but at the same time, Hannah is really ready to get back to regular foods! She does love the beef broth ... who knew??! The GI doctor ordered another ultrasound for tomorrow so we will get a look to see if her intestines are better.

I am planning to leave again for this weekend so Hannah will have some time with Aunt Kim on Friday night and then with Jim on Saturday. I am going to enjoy just being home & being with miss Lily.

Hannah's 1st grade teacher is coming tomorrow afternoon to work with her on writing & math. I am so thankful!! Imagine that she might actually know something other than movie lines when it comes time to return to school :-)!!! Of course, she has gained a lot of knowledge in the medical field through all of this!

Please keep praying for her bone marrow to come back, her intestines to remain healthy & the pain in her legs to go away!

All God's best --

Anoop Back on American Idol

Hannah is very happy that Anoop is back on American Idol for the Wild Card ... vote for Anoop!!!

Hannah is about to get platelets (midnight). Her wbc counts are still low -- today it was 1.0. The dr. wasn't too concerned .. just the way it goes ... up & down, up & down. She is putting Hannah on the "she could leave the hospital in several days" track!!! She is taking her off of all anti-biotics & starting her on soft foods tomorrow.

Hannah already had a bit of soup tonight with some soft noodles ... she was just dying to have something besides broth, jello & juice. Her tummy is hurting a bit so hopefully it will be able to handle soft foods. As long as she can handle foods & her body does ok, we will be able to go home!!!!

Also, Dr. Horvath is going to call Dr. Young at NIH in Maryland to see if we can move our appointment to April. She thinks it is too much to travel right after Hannah gets out of the hospital (I agree!!!). We all just need to be home for at least a little bit!!

My mom booked her ticket & will be back in 2 weeks to help with things ... she is the best ... yeah!!!!!!

Right now Hannah is doing "dot art" & watching a movie. I am about to fall over from the muscle relaxer I took about an hour ago ... off to bed!!!!

All God's best -

Liquid Diet

Hannah started on a liquid diet yesterday (Tuesday). She had jello, broth & juice!!! Her tummy seems to be handling things ok -- she hasn't had pain, so that is a great sign!! She was so excited for a food tray to be delivered & even made a video for "blog-land" of her eating her first meal. I will have to upload the video once I get home (for some reason I can't upload video here at the hospital).

Hannah's white blood cell numbers are lower than they have been in the past few weeks so we are going to talk with the dr. today to see what she thinks. I know "up & down" numbers are just part of this road to recovery but it was discouraging to see her wbc back at 1.1 again.

I have been a sleeping maniac from a muscle relaxer I have been taking for back pain. The back pain is from the bed here at the hospital. The muscle relaxer has helped but wow, have I been wasted! Hannah has been very sweet to me ... asking how I am feeling, etc. So cute!!

Hannah's spirits are really good. She was up almost all night last night -- watching movies & coloring with pastels while I was "passed out" next to her in the bed.

All in all things are good ... just still waiting & being patient for this ATG treatment to kick in. Time for the bone marrow to wake up!!!

All God's best from Suite #1303 @ Kaiser Fontana --

Happy 40th Birthday, Rachel!

To my wonderful big sis -- Happy 40th!!

What an awesome sister you have been over these years. Life was so much fun growing up together & I just can't imagine what it would have been like any other way! Miriam & I are so blessed to have you as our eldest sister. You continue to be a great example to us in so many ways!!!

Congrats on reaching some great goals these past few months with Jenny C... I can't wait to see you in your "skinny jeans" next time we are together!

Thank you for the way you love my kids ... for the way you waited for Lily as eagerly as I did. For your advice. For your phone calls. For your care. For your support. For your unconditional love.

Your life is truly a gift .. and I am so blessed to be your sister!!!

I love you & thank God for you!

Happy 40th!!!!

-- Delight yourself in the Lord & He will give you the desires of your heart --

Blue Popsicle

Above are ... LILY PICTURES FROM OUR WEEKEND TOGETHER .. SHE IS SUCH A SWEETIE PIE!


Hannah actually got to have a Popsicle tonight!!!!! It was her first of anything in almost a month. The nutrition she receives through her IV has kept her from feeling hungry & kept her from losing weight during all of this no eating / no drinking. The doctors are just starting to see how she does on clear liquids ... I guess that also includes frozen blue high fructose corn syrup products! :-) Hannah has declared tomorrow as official "Popsicle Day"!! Hopefully the one she had tonight will sit well in her tummy & she can enjoy some more tomorrow. Please pray that her intestines will handle this "food" & she will be able to move on to solid foods & begin really getting ready to ... shall I even say it?.... maybe one day go home again!?! I don't know ... just my crazy thoughts! I don't want to get too ahead of myself here but this week is one month since THIS hospital visit started.

Sunday was 5 months since we stepped off the plane with Lily at LAX and 3 months since we stepped in the doors for our Aplastic Anemia journey at this hospital. Wow.

On Sunday I was supposed to be back at the hospital at 3pm b/c Jim had to leave for a flight. I just couldn't pull myself together to make it happen. I guess because I don't get to cry that much, that when I do it just takes over. Oy - what is a mom to do?! Erika filled in for a few hours & Hannah had an absolute blast with her! That gave me a few hours to take a much needed nap - with Lily, of course!. I think when God promises to give us rest - sometimes it means SLEEP!! After my Sunday nap I felt like I could walk into Hannah's room without crying my eyes out in front of her.

I know I am going to get through this & in the process I am growing & learning to lean on the Lord with all of my heart. Truly. I thought waiting for Lily drew me closer to the Lord & taught me to trust Him for great gifts ... wow, this is a new level for me. God is using this in many, many ways....and for that, I am so thankful ... yet, if it was up to me, I'd be the one with those IVs in my arm.

I am thankful for Hannah's continual happy heart. Even now, 90 days into this, she finds many, many reasons to smile. Like tonight, she got up with tons of energy in front of the mirror & sang her heart out to the "Anastasia" music!! It was a adorable & truly if it wasn't for those darn IV's, you'd never know she is ill.

Pray for Hannah's blood counts to increase - they are still very low (even though better than December). Pray for her intestines to completely heal & be able to tolerate liquids / food. She is coming off of some of the anti-biotics this week & we will see how she does. Lord willing, we will be able to go home before another month goes by ... how is it possibly March?! And 2009, of all things!

PS -- If anyone lives in the Southern California area & has a very, very secure backyard & would like to provide "foster care" for our dogs ... they are very much in need of some attention!! Please email me if you could possibly care for our dogs while we are in & out of the hospital. They are just too much for us right now ... thanks!!! (both are small size dogs) My email is eriksenvp at gmail dot com

TIME

I desperately needed a little TIME......

Time to cry.

Time away from this hospital room with no windows.

Time with my sweet Lily.

Time with Jim.

Time at home.

Time in the tub.

Time for a walk.

Time to shop.

Time to rock Lily to sleep.

Time to sleep.

Time to watch TV.

Time to eat, eat, eat, eat, eat.

Time to think.

Time to re-group.

Time to pour my heart out to God.

I was gone from the hospital for 51 hours ... Hannah had Aunt Kim on Friday night & Daddy on Saturday night.

Thank you, Lord, for the break I needed!

Hannah & Lily are both sound asleep here in the room.... time for me to sleep!