Wednesday, May 27, 2015

Clinic day for everyone!

Clinic Tuesday!

Dan and Nana Anita took Selene to CHOP yesterday for her appointment. Other than it being a marathon of waiting (never get stuck with an appointment past 10:30am, the back-up is crazy) it seemed to go well. Her liver levels came down a bit and most of her other numbers went up (though platelets dipped a bit).  So they are taking her off Bactrim and giving her a different medicine once a month in the hospital. However that won't work long-term so we'll have to switch to a daily. Not the end of the world, but the twice a week was really nice.

They also took blood for the viral tests but on physical exam they are fairly certain she is perfect and that the runny nose is unrelated.  So that was all good news.

While they were doing that, Nana Robin, Ainsley and I took Kalina to her first pediatrician's appointment.  I was a little bummed to hear that she had lost a bit more weight than when we left the hospital.  She is currently refusing to nurse after doing so well in the hospital. But she's been taking 2 ounces of pumped milk fairly often and really well so I thought she'd be gaining. She was perfect otherwise and we'll just go back for a weight check next week. I also scheduled an appointment tomorrow with a Breastfeeding Resource center which is apparently amazing. So I'm pretty excited about that. Kudos to pumping moms, that is so much work!

We also discussed a CBC to test Kalina's neutrophils, so we will be doing that soon. I know the chance is so low of anything being wrong, but I'll be thankful to see healthy numbers.

For now we are just trying to get into a rhythm of taking care of three kids and learning how to function on even less sleep than before. Although if it wasn't for the bottles and pumping night time wouldn't be so bad! She's sleeping 3-4 hours at a time and goes right back to sleep. She's really a dream!

She's Here!

We are so thrilled to let you know that we welcomed Kalina Clare Bell to our family the morning of May 21st. She was 8lbs 7ounces, 21.5 inches with a slight tuft of beautiful dark hair. She is absolutely stunning and her big sisters (and Mommy, Daddy and everyone) couldn't love her more!

Friends and family know just how hard it is for Dan and I to agree on names for our children. In fact, when I found out we were having a baby my first thought was "How are we going to name another child!?" :-)

I think we read the top 1000 names on the social security list every time we were in the car for more than 30 minutes. Nothing struck us. But we had decided that we wanted to honor our Irish heritage and part of his family's history with the middle name Clare, after his lovely grandmother (all of our grandmother's are incredible and lovely women!) and County Clare in Ireland.

But her first name proved more difficult. In a sea of Irish heritage my grandmother always held strong to her Slovakian roots with food, music and customs. My sister and I were especially eager to share these traditions with her. My talented little sister makes Pysanky eggs every Easter!



Thus we decided to search Slavick baby names. We came upon Kalina and that was that. And besides, Dan has always begged for alliteration in the girls' names, so even that became a non-issue. 

2:30am. I highly suggest going into labor in the morning so you get a full night's sleep to start :-)

Proud Daddy!

Sleeping beauty

Nana introducing the big sister!

Gigi and Ainsley are smitten!

No one can stop looking at her perfect face!
Nana and Pappy couldn't wait to get there!

Pretty in Pink

This girl LOVES her!

So cute!

"Mommy, can you eat a sundae so that Kalina can taste it?" Happy to oblige.


lazy morning before pre-school. Life is sweet.



Tuesday, May 19, 2015

Never get your hopes up...

When you are dealing with Bone Marrow Transplants.

I really went into today thinking that we'd be all good and well on our way to every other week. Then her numbers came in and her ANC was down to 1700 and her liver numbers were up more. They were discussing options and rationale together before advising that next week we would test for a few different viruses that might be present.

I knew that runny nose was something to be feared! She is eating, sleeping, and playing fine so I'm hoping there is no virus. The other option is that the antibiotic that she's on can sometimes increase liver function. So we would simply change that, and thus we are avoiding it until we can test her next week.

Other than that she was a gem and had them seriously laughing with her charm and antics.  Apparently two of our Oncologists were doing clinic rounds today and were fighting over getting to see Selene.  She's the best!

So, while I was hoping for better news this week, and the idea of a break during what is sure to be a busy week or two, I'm glad that we will hopefully rule out some scarier possibilities next week.

Go away runny nose!

Freebird!

First world kid

Sprinkler!

Clinic

Making pictures

Nurse Ellen is giving Zi Bo his check up first, he needed a "bambaid"

Stylin on our evening walk

Friday, May 15, 2015

Runny noses terrify me!

Selene's nose has been running for three days. Clear, no change in appetite, playing, no fever. But it's still nerve wracking. When I picked her up after her nap she seemed super warm, then I remembered that she fell asleep while playing Ghost with her blanket over her head. So within minutes she was cool again. But seriously, if we could just have no runny noses or fevers for the next year, that would be great!

I ran into the mom of another little boy from our BMT unit, who was about 10 days ahead of us. When she asked me what day we were on, I blanked. Until two weeks ago I couldn't keep track of how pregnant I was and now I can't remember how many days + we are! I need apps on my phone to track all of this!

It's been 67 days for the record :-)

Ainsley went to a Wilmington Blue Rocks game with Dan, Grandad and Nana. At least when Selene asked to go I could legitimately tell her she just isn't old enough to go to a night game :-)

Fancy girl, insists on wearing pantyhose. What 2 year old insists on pantyhose!?

Don't let them fool you, they were fighting over who sat on which side prior to snuggling in so sweetly :-)

LOL, TV

I'm a sucker for tv medical dramas and I know they are no where near medically accurate, but sometimes I wonder why they don't even try!

I was watching Night Shift (quality tv right there) and there was a teenage girl who needed a bone marrow transplant. In a 12 hour shift they discovered the brother was a match (then why did I have to wait 5 weeks for Ainsley and Selene's HLA testing!?), harvested his marrow and infused it into his sister. What?! No fair she got out of all of the testing, terrible chemo and testing! I mean, I know most people don't know all the details and won't care, but try to be a little realistic why don't you?

Tuesday, May 12, 2015

Kudos to Bloggers who can actually think of titles for every post...

So I'm being harassed by family for not updating more often :-) Sorry! I'm going to blame it on pregnancy. 38 weeks! I can't believe this little one will be here so soon. I'm equal parts ecstatic to meet her and terrified of managing Selene and at the same time. Good thing I have amazing Nanas in my life!

We had our Ortho appointment on Thursday. I think the only aspect of CHOP that I am slightly frustrated by is the seemingly lacking knowledge of what a bald head and masked child means. You would think every member of the staff would know how to treat a child like that. I mean, don't get me wrong, when I walked into that mob scene of a waiting room I wasn't about to not fight for my kid. But I shouldn't have to.  When I checked in they told me to go to the annex where our doctor sees patients and ask for a room. I get it, it's busy, they see some asinine number of patients a year, the number 48,000 is ringing a bell. But when I first asked for a room I got a curt "I don't have a room." I held Selene in a corner of the hall for about 5 minutes until they got me one. I walked in and the kids' hospital gown was on the table and the paper was still out.  My heart was racing.  Of course I whipped out my Clorox wipes and disinfected the entire table. I guess I just take for granted how efficient and thorough Oncology is.

In any case, I was also worried about how Selene would react to keeping her mask on the whole time. Other than getting hungry and having to wait for the nurse to leave for her to eat, she wore it the whole time.

So, the appointment was pretty much as uneventful as I had imagined. This type of fracture is super common in kids, especially those who play sports. And 99.9% of the time it's not big deal and goes no further. Based on her transplant, diet and the fact that she is taking vitamin D, calcium and is active, he thinks nothing will come of this. We go back in 6 months for x-rays just to be sure the curvature of her spine is on track and the spaces aren't any more compressed. Other than that she seems to be good to go.

Our weekend was busy and lovely. Saturday, Ainsley and I went to Nana Bell's house for a lovely Mother's Day brunch with the great-grandmothers. We were thoroughly spoiled with delicious food and delightful catching up since i hadn't seen them since the transplant. Then we went straight to a little birthday party for Ainsley's classmate.  I'm wondering how hard I'm going to compensate with her birthday party next year after the chill party she's going to get this year.

Mother's Day was relaxing and calm. Just how I like it!

Today's appointment was a marathon of waiting. Our appt was for 10:30 but traffic was delightful after the past two weeks of rush hour. So we arrived at 10:15. By 11 we were done with triage and blood work, got to hear all of Music Therapy and were waiting for a room.

I need to take a minute to give one more example of my champion kid. Now that tubies are out Selene needs to be stuck for blood. She barely winced when they inserted the needle. Then as they drew 5 vials of blood she asked for stickers, the tech said of course! And she squealed "Hooray! I'm happy!" I mean, not really the attitude most 2 year olds have while blood is being drawn, in fact, she probably handles it better than many adults :-)

At noon we were finally given a room, which meant the girls could finally eat something, they devoured their peanut butter and jelly, strawberries blueberries AND the snap peas that I was hoping to eat :-) At 12:45 Dr. Olson and Nurse Ellen came in. They apologized for being so far behind. All of that for 5 minutes of checking in. Her numbers are all stable over last week. Although her liver level was a touch higher than they'd like. Apparently the antibiotic that she's on can cause that so we'll check it next week. If all looks good there then we can move to biweekly appointments! What perfect timing with the new addition arriving so soon.

We continue to be thrilled and blessed at Selene's progress and health. We owe so much of it to all of the prayers the flood in daily for her. Thank you for all of the love!

I couldn't believe she agreed to put this on for her Ortho appt.

Flute lessions

This seems safe

It's water, but don't be fooled, she's obsessed with Coffee

Mother's day morning

My gorgeous girl!

Ainsley rocking out on her xylophone

Thunder drum!

Music with Miss Allison

Let the waiting begin





Things are getting real! Baby gear!

Tuesday, May 5, 2015

Status Quo

I don't know how people commute into the city on a daily basis. The daily traffic would make me go insane! It took an hour to get to the hospital after dropping Ainsley off at my inlaws, that should have been a 35 minute drive!  Anyway.

We had our bone health appointment where we met with the doctor, a nutritionist and physical therapist. All three were pleased with her, they took her off of calcium and dropped the amount of Vitamin D that she needs. One more confirmation that she's thriving!

While waiting between our two appointments, Selene enjoyed some music therapy and actually participated today! Eventually she was the only one there so..I'm blanking on the music teacher's name...asked what song she wanted to sing. She yelled "Puff the Magic Dragon!" She didn't know all of it, because who does other than Peter, Paul, Mary and Me? So Selene and I sang it for her. Then she asked for Somewhere Over the Rainbow and she didn't really know that one either. I'm beginning to think I choose strange songs to sing for lullabies. I'm now wondering if she's learning them for next week :-)

Her numbers were also great and our meeting with the medical team in Oncology lasted just a few minutes since there isn't much to talk about, other than how cute this kid is.

Tomorrow we head to Orthopedics. I tried getting out of it but Dr. Olson suggested that we just get them to look her over and make sure we have nothing to worry about. I really don't see how we possibly could, but we'll go. I also hear it's a mob scene usually. So here's to hoping the cute little bald head and a mask will get us our immediate private exam room and that it won't make them forget about us for 3 hours.

And as always, some pictures of our crazy, sweet, and boring life.

We were in the DD drive thru and I asked what she wanted, as in donut, and she replied, "Coffee." Obsessed.

Strike a pose.

Walking the baby.

She's still 2 and loves her tantrums. Is this against BMT rules?

Music at Oncology Clinic!

Decided to try the drum today.

Taking an evening walk. She believed the weatherman, she'll learn that they are always wrong soon enough.


Friday, May 1, 2015

Even quarantine can't slow down life.

Last week my Mom was here and it was wonderful. The girls love spending time with her and I love being able to get things done.

On Sunday, Dan and I went to D.C. One of my good friends was killed during a training mission in January. She was a Captain in the United States Marine Corps and was posthumously promoted to Major. She was an incredible person, devoted to her country, devoted to her family and friends and it was a traumatic loss for anyone who knew her.  On April 27th, she was laid to rest in Arlington Cemetery.  The service was beautiful. The honors and respect with which was laid to rest were well earned and completely breathtaking. From the escorted motorcade to the cemetery, the helicopter flyover, the Honor Guard and Band that presided and the beautiful words spoken by the pastor and good family friend were amazing.

A beautiful breeze and the sun shining down perfected the day as we all said goodbye to someone who shone on our of our hearts.  My mind often races with all of the memories I have of her but I'm thankful to have them.

After arriving to town earlier than expected on Sunday, I realized that she would not think we had to sit in mourning so Dan and I took the metro over to the National Mall. What better way to celebrate her than to honor all of the soldiers by visiting the memorials?  I made a promise to her in my heart that I will go back and go to the museums and read and look at every single thing. The only way to visit a museum in her opinion.

Washington Monument

WWII Memorial

WWII Memorial

The Honor Guard standing watch

Rest in Peace friend

After that lovely celebration of Betsy our normal routine continued. Tuesday we went to clinic where it was once again confirmed that Selene is rocking it. There really isn't much news at this point and I suspect we'll be in a holding pattern until our next few big changes. Like June 9 when she can stop wearing masks, then July 9 when we can venture out into the uncrowded world. That 4 month mark will also be our first round of full testing to see how she's doing.

Music therapy, which made me cry. Hormones are getting the best of me!

Sisters just passing time at clinic

Even girls can wrestle

Safety first

"Mmm, comfy cozy."

Daddy has always wanted a fire pit, so this is the compromise until we buy  a new house!


And of course Thursday was our next big hurdle completed when we had her tubies removed! She did great. We had a 9am arrival and she was taken around 11. Thus we only had about three outbursts over hunger. Hopefully that's her last round of anesthesia for quite some time! Her surgeon did a great job and all that is on her chest is some Dermabond.

I wasn't here for bath last night (that paragraph is coming) but Dan said that when he was getting her ready she got out her Press and Seal and medical tape. He told her she didn't need it and she didn't get it. "No wrap?" She seems pretty unphased by the lack of her tubies.

Last night we had a kindergarten night at Ainsley's new school. So I took her over with our neighbor and her BFF. It was nice, though a part of me was wondering if we made the right choice in leaving Mater Dei. I think I've grown quite attached to Mater Dei and especially her teacher after all of the emotional support and love they've given our family through this ordeal. That school will always hold a piece of my heart. And if we buy a new house in the area then I'll get to send the next two girls there too!  But the teachers seem really sweet and I'm sure we enjoy her time there as well.

After leaving the meeting I came out to a text from Dan that the police had closed down our neighborhood due to a shooting in a neighborhood right next to ours.They had barricaded our street and weren't letting anyone in. I took Ainsley to Starbucks to sit for a bit but she started getting really sleepy so we made the decision to spend the night at Nana and Grandad's. On the drive there Ainsley sobbed over not having Ducky.  Apparently Dan was facing a similar challenge at home with Selene since her blanket was in the car. While I find the attachment our girls have for their lovies endearing, it makes moments like that a bit harder.

However, both of us were successful in getting our respective girls down to bed and everyone got a good night's sleep (well, except me because hips, back, belly and heart burn).

So, the week has been quite eventful. Next week is busy and filled with my 37 week OB checkup and appointments with the Bone clinic, Oncology clinic AND orthopedics. I'm still not 100% sure why ortho needs to see her when Bone hasn't even assessed things yet and physically she seems fine. But I guess they want to cover all of their bases and make sure we haven't missed anything that the Neutropenia did to her little body. So I guess we'll make the extra drive into the city to be sure. Call me lazy, but this Momma is tired! :-)

She gets control of the TV when she has to have surgery.

My purell addict, it's coincidental and appropriate. 

Petering out with hunger

She didn't sleep the night before so her anesthesia recovery "nap" was over 2 hours :-)