GI Update

Julia had her follow up in the GI clinic today.  Can you believe it is snowing, again! 

They were very impressed by her progress since her appt two weeks ago.  She had a bit of a slow start, but we accomplished everything they wanted for the first two weeks.  Her bowels emptied so well she didn't even need the follow up xrays.  The PA was very sweet telling Julia what a great job she was doing and how great she looked.  She said we were doing all the right things at home.  I eagerly waited to hear what the next steps were going to be as we move back toward potty training.  The next step in bowel retraining is..... six more weeks of what we're doing now- miralax twice a day.  Guess the diapers are here to stay for awhile.  Apparently this is going to be a much longer process than we had thought.

It is encouraging that we are able to induce proper functioning in her bowels, even if that is with medication right now.  We're thankful everything can work, now we just have to train it to work as it should again.  The whole appointment only took 15 minutes start to finish and we were heading out.  At this point we won't come back to the hospital until her April GI appointment and then for her next scan day.

February Firsts

This new found freedom has been a breath of fresh air in our family.  It has been SO long since we have just enjoyed the simple things as a family.  We were thrilled when we heard about the warm weather and the chance to be outside! Without heavy coats!

Saturday morning started at the Children's Museum.  Julia had no recollection of having been before and didn't know what to expect.  She jumped in pretty quickly and was painting with Carter...  

 

 dressing up and drumming with Daddy...

  

 and playing doctor in the hospital.  I love that they added a newborn nursery- so precious! I have to say the baby lover in me was happy to jump in and pretend, too.  Who wouldn't want to carry around one of those sweet little bundles? (and these don't wake up during the night!)

  

 Carter was happy to join in, too.  He loves any and all things medical...

  

 Then we had another birthday party in the afternoon that included swimming! The kids were so excited.  they haven't been in a pool since August.  There was lots of squealing, splashing, and fun.

 

It was so warm when we left and the sun felt so good we felt we just had to go to the park.  Julia told us she didn't know what a playground was anymore and we had to remedy that.  Some of our friends joined us and there were many more playmates at the park.  Julia was fearless climbing, sliding, swinging, and running.

  

 When we finally arrived home for dinner, she flipped on the fireplace, grabbed a sleeping bag, and curled up in the chair.  I think we wore her out.  That was the most active day she has had in a long time.

  

On Sunday morning we all headed to church and Julia went to her own Sunday School class.  I didn't really know what to expect and how she would react.  For the past week she has been very clingy.  When we're out in public she has a death grip on my finger.  This is all a new world for her.  God knew I needed some reassurance and when I walked up to her room there was Amy from my Bible study.  A friendly face who already knew her history and all my fears and concerns without my saying a word.  Thank you God.  Julia walked in confidently and was happy to see 'her boys'- Jack, Bryson, Will, and Matthew.  She pulled up a chair and got right to work.  

I stayed for a few minutes and she told me she was fine.  I'm so proud of her.  It will never cease to amaze me how she has faced every trial over the past year with such determined grace.  Her moments of weakness come in private when the two of us talk, but in the moment she steps out boldly no matter the procedure, pain, situation, or unknowns. 

  

The adjustment has been easier than I imagined.  The hypervigilance has faded (I do still bristle when I hear or see an actively sick child, but I'm learning to relax) and I'm just savoring the moments in still frame in my mind.  I don't want to forget what a blessing all of this is to us.  God has so faithfully carried us every single step of this journey and He hasn't stopped.  The kids have been singing the song, You Never Let Go (by Matt Redman) lately...

Oh no, You never let go
Through the calm and through the storm
Oh no, You never let go
In every high and every low
Oh no, You never let go
Lord, You never let go of me

It touches my heart so deeply to see them learning just how faithful their God is to each of them, meeting them exactly where they are right now.

I confess I did shed a few tears as I walked away and headed to worship.  Tears of joy for reaching this milestone.  Tears of sadness for the year of innocent childhood she lost.  Tears of gratitude for her healing and strength.  Tears of appreciation for the wonderful people who have faithfully walked alongside us for this marathon journey and are still there.  Happy tears that God has been so good to us.

And another first...  

Julia has been asking daily when she will have pigtails again.  So today we made it happen- 'pebbles flinstone style'.  I would be lying if I said I didn't miss the curls.  Her hair is so different now.  I know it's just hair, but her ringlet, shoulder-length curls were a part of her.  A part that will always live in my memories.  It's just a reminder of the cruelty of cancer.  We don't talk about it and we rejoice with her ever growing silky soft hair.  She's excited to be wearing bows again and will be so happy when people stop calling her a boy.  Kids especially make the mistake.  She gets very feisty about it and makes her point known.

 

I love that silly face, no longer hidden by a mask.  It will be nice when we reach the point when her body is no longer covered by bandages and Sharpie marks.  Though the scars of her courageous battle will always remain.  It's wonderful to see the twinkle back in her eyes :)

Pint-Sized Prayers

A little glimpse into the prayer life of a 6 year old...

Brenners Radiothon

Don't miss the Annual Brenners Hospital Radiothon on WMAG 99.5 today (Thursday) and tomorrow (Friday) as they share the stories of so many families touched by Brenners and precious lives saved.

You can even listen to it streaming online, just click HERE.

We love the doctors, nurses, and staff of Brenners!!

Julia Update

Julia has been recovering great from her surgery.  She was pretty low key on Monday and took a good nap that afternoon.  I went up to get her out of bed to come eat dinner and she was still sound asleep at 6pm.  She opened her eyes and I asked if she was ready to get up.  She said "No, just leave me here.  I'm good." She did finally get hungry, after not having anything for 24 hours.

By evening she was moving around and wanting to play.  She kept her arm against her chest because it was hurting.  It amazes me how readily she switches to her weaker hand and doesn't miss a beat eating, playing, etc.  Kids are so resilient.

I sat and played games with her before bed and we were talking about her surgery.  I told her how proud we were of her and what a great job she did.  She looked up at me and said, "Mommy, when they took me in the surgery room and laid me on the green table, I started to get a little bit nervous." Bless her little heart! You're supposed to be nervous in the operating room Julia. I don't know of anyone that wouldn't say that!  But she knows God is taking care of her and all the doctors and nurses are there to help her.  She said they all had on their masks, just like in Curious George Goes to the Hospital.  I can't tell you how many times we've read that book.  As much time as we spend at the hospital it is still one of her favorite subjects.  Besides George, her other favorites are the Elmo Goes to the Doctor DVD, Big Bird Goes to the Hospital movie, Curious George and the Doctor DVD, and the Oncology, Stupology I Want to Go Home book.

It still astounds me how well she handles everything.  She does not cry, resist, or get upset about anything done at the hospital.  There are so many other kids in their completely losing it over nothing.  She was fully awake when they took her from pre-op and carried her off to the OR and completely cooperative.  She has a grace and peace that are well beyond her three years.  She did say it was hurting Monday night, so I offered her her tylenol (she doesn't like to take the codeine).  She drank it, thought for a minute, and said, "Mommy, it's not working." Wishful thinking.  It eventually helped.

Tuesday morning we headed to storytime for Julia's first public outing without her mask! She was so excited.  She grabbed her little carpet square and ran up to sit in the front.

 As I sat in the back of the room with all the other moms looking out over the sea of kids, I couldn't help but cry.  It is such a blessing to see her be one of them again.  I pray that each encounter brings her more security and confidence in how to be a kid again.  That is by far one of the worst things about cancer, aside from the pain and suffering is that it steals innocence and childhood from kids that can never be replaced.  My tears are not only for Julia but for the dozens of friends we have and the hundreds of other children still in the trenches fighting their cancers.  We will never take a day for granted.

By Tuesday afternoon she was running around like her normal self.  They actually played outside most of the say.  Happy it was sunny and not snowing or raining.  It's still cold in my book, but kids don't seem to notice that.  Evidenced by the fact that they were playing with water guns in the winter coats?! Don't worry they didn't get each other wet.

She is excited about the new freedoms she has and to have reached this stage in her journey.  It is another deep breath for all of us as we leave chemo and radiation behind.  Carter is enamored with her port, as we expected.  He wants to show it to her and talk about it all the time.  She has looked at it, but that's about as much interest as she has.  I can just see the relief in Carter's face that this part is over.  He has been so attentive and concerned throughout this process- keeping track of her appointments and restrictions and discussing the process with her (his way of coping).  So today they are playing cars and vet's office and just being kids.  Thank you God for your tremendous goodness and grace.

She heads back to GI next week and we will continue with her bowel retraining.  Her next Scan Day is April 22nd.

Recovery...

 

Julia was in recovery by 8:30 and starting to wake up.

  

They removed her leads and IV.  She was very eager to drink.  After two cups of water and a purple popsicle, she asked for her paci and a pillow and wanted to go to sleep.  

  

 Anesthesia discharged her and we convinced her it would be nicer to sleep at home. She tried her darndest to lay down in the stroller...

  

We were home by 10am and she is happily snoozing on the couch.

 

And her port-a-cath is now a keepsake and no longer a medical procedure.  The hard disk was sewn into her chest wall, the hard plastic bubble on the top is where the access needle went through and the flexible line is what ran into her heart.  Thanks little port, you did an awesome job!

Thanks for all your messages, love, and prayers!!

Port Surgery Day!

UPDATE: 8:05am... Julia is out of surgery and in recovery.  Everything went great.  They were able to use the same incision for removal.  Dr. Pranikoff came out to talk with me a few minutes ago.  The tears started flowing as soon as when I saw him.  I didn't expect that to happen at all.  We haven't seen him since he removed her cancer back in March.  It is very surreal to be in this waiting room again where we were the day she was diagnosed.  Today is a happy day and we are so thankful God has brought us to this point and for wonderful doctors like him.

*****************************

UPDATE: 7:35am... The OR nurse just called and said things are going well and Julia is such a good little girl.  She has about 20 min left in surgery.  Then she will head to recovery.

******************************

The big day is here- the port is coming out :)

Julia is doing well.  She woke up during the night trying to find her water cup and was upset she couldn't have it back.  She was okay though when I woke her at 5am.  We had an easy drive to the hospital- no snow, yet.  David Crowder Band was playing on the radio on our drive in.  His music carried us through her last surgery.  God is so cool like that!

 They took us back and she has been doing good with everything.  She does not seem upset by any of it.  She is very excited about getting this port out.  They wheeled her back with her two dogs by her side.

Thanks for all your prayers! We expect the surgery to take about an hour...

Valentine's Weekend

We've had a fun weekend together.  After a busy week of doctor's appts and busy schedules, we were fortunate to slow down and enjoy some family time.  There has been a lot of yelling in our house this week- from all parties.  This weekend has been good for our souls and full of smiles.

The kids eagerly opened their cards they've been gathering in their mailboxes...

 

Julia always looks forward to Daddy's pancakes and this weekend he made hearts for his little princess...

  

Saturday we spent the whole day doing crafts.  It was a day of messy fun, but we all had a great time and I only had to clean it all up once...

 

The kids loved all the dough, glue, and paint.  We finished with some cute keepsakes...

 

Then it was time for a much needed date night.  (Thanks Patrick and Shana!) We had a yummy dinner and went to see The Blind Side movie (loved it!). It was a great night!  Though I have to confess that in between the two places, we went to CVS to buy diapers.  Isn't romance with kids fun? :)

  

We were happy to all get to church this morning.  Our several inches of snow yesterday had all melted away by this morning.

  

After church the kids had their annual scavenger hunt.  Mimi and Grandpa send them a box each year with a gift and several small surprises.  We take all of them and turn it into a fun game...

  

Then we enjoyed a yummy brunch...

  

...followed by a family bike ride.  The kids and Daddy all have bikes now and Mommy runs alongside to give Julia a push when she needs it.  It felt so good to be out in the sunshine- no wind, no snow, no rain... for now.

It has been such a treat to have fun family time.  Julia's surgery to remove her port is scheduled for tomorrow morning (Monday) at 7am.  We are supposed to be at the hospital at 6am.  It is also supposed to start snowing at 4am.  So please pray for safe travels in the wee hours tomorrow.  And seriously, what is with all the snow this year?! Everyday someone says, 'did you hear it's supposed to snow again?' And it has, every week.  Even the kids have seen enough.  They didn't even ask to play in it yesterday.

I had some time Friday morning, while Carter was at a playdate, to talk to Julia about her upcoming surgery.  We went over everything that will happen.  At the end she started to cry and said, "Mommy, I'm really nervous." It broke my heart.  I started to reassure her about the procedure and how the day would go.  She stopped me and said, "No mommy, I'm not nervous about surgery.  I love going to the hospital.  I'm nervous about going back in my classes (church, MOPS) and playing with my friends again." I knew it would be an adjustment, but I didn't realize how much it's affecting her.  She has not been in large group child settings in almost a year.  She was 2 1/2 then.  She doesn't even remember it.  I know it will take time for her to learn to socialize, adjust to the busyness, negotiate and share with other kids, follow rules, and fend for herself.  I promised her we would do it slowly and she didn't have to do anything that she wasn't ready for.  Please pray for her adjustment to being a regular kid again.

She is excited about getting her port taken out.  Today was her last day of wearing a mask when we went to church.  She likes to tell us, "When my port's out, I can touch things again (in public places like the children's museum)!" We are all looking forward to her coming freedom.  And spring being right around the corner could not have come at a better time! Please pray for a smooth and successful surgery tomorrow and quick healing.  (Her bowel retraining is going as planned so far, though quite messy with the large doses of miralax.  I will be updating the blog tomorrow from the hospital with surgery updates to keep everyone posted.

Hope you all had a wonderful weekend surrounded by ones you love!

 

Our Happy House

I always dread taking down the Christmas decorations because the house feels so naked.  Then after awhile I start to noticed how dirty it is.  I have some inkling to start spring cleaning, but the frigid weekly snow dampens that pretty fast.  So I am always happy when February rolls around and we can decorate for Valentine's Day.  It's such a fun time to celebrate our love for each other, our family and friends, and God's amazing love for us.  It's something we enjoy the whole month long.  Here's a little glimpse into our home...

 

  

 

  

  

  

 

Happy Valentine's Day!

The Things That Matter

New Year's Resolutions.  Love them or hate them, they come around ever year.  A new month, a new year, a new start.  You can't help but think about things as you reflect on the past year and think about the one ahead.
I have had so many conversations with other moms lately about feeling overwhelmed, inadequate, and the dreaded 'mommy guilt' that we all have.  It is epidemic! The new year can be a fresh start in many respects.  A time to do things differently.  I don't normally make resolutions, but somethings been on my mind, lately.  My goal this year is to...

Do the things that matter, better.

If you ask any mom you know, they would tell you they have a lot on their plate.  It's true no matter what your individual situation.  Our plates may look different... full time work, part time work, stay at home mom, volunteer, wife, friend, mom of toddlers, mom of teens, nursing mom, homeschooler, foster mom, daughter, caregiver... to name just a few.  Most people's plates contain servings of many of these at one time.

And those are just the main courses! Then we have to make room for all the side dishes... laundry, dishes, meals, errands, organizing, planning, carpooling, refereeing, nurturing, hosting, molding, creating, couponing, discipling, disciplining, cleaning, serving, praying, writing, teaching, entertaining, fixing, finding, disinfecting, inspiring, exercising, oh and I almost forgot... sleeping!

Where did all this come from? I couldn't help but let my mind wander back a a hundred years or so. It used to be mothers spent all their time just doing the basics.  Childcare, laundry, food prep, and cleaning took every hour of your day.  There weren't many choices to how you spent your time.  Today, we have so many conveniences now that make these things easier  We also have a wealth of choices and opportunities for ourselves and our families.  An endless array of decisions to make. And in the midst of all of this, most of us feel the need, almost a mandate, to do as much as we can within each day.  

We all have friends and family members we look up to that we think have it all together.  They are able to juggle and make room for everything they need to do.  In the blog world we all live in we gain even greater access into the lives of others.  On one hand it is a tremendous network and resource that has amazing benefits and possibilities, but it also leaves so many doubting their own skills and feeling grossly inadequate.  You know the feeling, the blogger mom who homeschools, makes all organic food from scratch, creates all her kids' worksheets and projects from scratch, sews her kids clothes, works out regularly, publishes books, blogs, serves at church, keeps her scrapbooks current, cooks for her husband every night, etc. all while smiling and never raising her voice.  Most mom bloggers out there are keepin' it real and reveal their struggles and mishaps as well.  But our minds play tricks on us and we begin to compare and feel inadequate and put pressure on our selves to do more.   

I've had a lot of time to think about this over the past few years.  When my own health was a daily hurdle (undiagnosed thyroid disease), I had to really take stock everyday and try to accomplish the essentials.  I had trouble just functioning most days and my mind was such a fog.  I give my sweet husband so much credit for going above and beyond every single day for our family. It was over two years until we had a diagnosis for my problems.  It took over a year into the process, but I realized I could let the stress and 'undones' weigh me down or I could let it go.  I learned in time (a lot of it) to give my days to God every morning and ask Him to show me throughout the day where my heart needed to be. When Julia's was diagnosed our life was no longer ours.  For the past year cancer was at the forefront of everything that happened to us.  I learned to let the schedule go and lay it all down, daily.


But through it all it has made me really take stock of my time and energy.  How do I want to spend my days? What do I want my children to remember? What matters to God? When my kids were really little I realized regular weekly housecleaning was at the bottom of the list.  Babies are only babies for a short time and I wasn't going to miss it.  As they have grown the flow in our days has changed daily but there will always be an unpredictability to it.  As our pastor reminds us, "The days are long, but the years are short." It is my daily prayer to enjoy the moments and not miss it because I was focusing on the wrong task at the time.  I read on a blog recently a sign that says, "Please excuse the mess, my children are making memories here." I love that.  Living life with preschoolers, especially homeschooling, is messy... in a good way.

The biggest challenge is perspective.  How do I need to respond or react in this situation to have the best outcome.  Am I taking the time to shape their hearts and not just their behavior? We want them to be holy, not just obedient.  I want them to be kids with character. Am I treating them as individuals and responding to them as I should? Is this really something that matters? Am I missing the point? Am I dwelling on the past, or living in the present? Am I modeling the behavior I want to see? Am I reacting out of my own unmet needs instead of the situation? Am I forgiving myself for failures and weaknesses? A friend said recently, "Our children won't remember all the things we did with them.  They will remember how we made them feel." That says so much- which led me to my decision to...

Do the things that matter, better.

All of this is impossible without prayer and daily surrendering.  God has a plan for each one of our children and He is in control, not us.  Whew! What a relief. But he also calls each mom to a unique purpose.  For some it's writing or volunteering or hosting or praying or caregiving, etc.  It is different for each one of us where and how we are called to serve, but it is so important to not lose that in the daily to-do lists placed on each one of us.  We have to make time for ourselves, forgive ourselves, let ourselves off the hook to 'do it all', be real with each other, encourage each other, ask for help, and when it doubt stop and pray first.

Wacky, Windy Wednesay

Today started SO much earlier than I had planned it would.  Julia was poking me at 4:30am to say she needed more water.  Then soon after to say she needed a new diaper.  Then she couldn't sleep because of the wind noise.  Then she wasn't tired anymore.  Needless to say, I did not plan on starting the day at 4:30, but now we had to roll with it.  We did fairly well for the first few hours getting ready and packing everything we would all need for the rest of the day.  By 9am, we were unraveling fast.  The kids were making each other nuts- still not exactly sure why.  When they weren't bickering they were finding trouble.  Where in the realm of the normal did throwing mommy's cell phone (twice) ever seem like a good idea?! After finally getting them to brush their teeth, put on shoes and coats, I decided it would be better if they went and got in their car seats while I grabbed the last minute items.

Simple enough, right?! Wrong.  Julia didn't want Carter walking in front of her in the car so she kicked him.  He in turn tried to bite her.  What?! Who are these kids? Apparently the gusting winds today have blown in some bad attitudes.  I settled that issue and left them buckled.  No sooner was I in the kitchen, Julia was screeching.  My mature mommy response? Screech right back at her from the kitchen.  Yes, it was not a shining mommy morning around here.  Just keepin' it real...

We were finally on the road at 9:30 and everyone was peaceful again.  Carter was actually singing the books of the New Testament and Julia was dancing while he sang.  I know it sounds crazy.  But it's true.  I have to confess I laughed at first.  This was SO not the snapshot of our morning, but a much better place to leave things.  We dropped off Carter and headed to Brenner's.  I was optimistic our day would improve.  I actually look forward to days like this with her because I have only one focus- Julia- and no other distractions or commitments.  Everything else just fades away.

We started in the GI clinic to meet with the PA about her chronic constipation.  I filled out all the paperwork.  It still catches my breath to see everything she's been through on paper.  After taking a quick history, she did a full exam on Julia.  She wanted to get an x-ray series to see what her bowels look like at the moment.  We went across the hall to radiology and were in and out in no time.  I always cringe because it seems some of the sickest kids we run into in the hospital are in radiology and they don't have their masks on! So those of us who are healthy and want to stay that way wear ours.  Then we headed back to the clinic and sat down to discuss the plan.

GI agrees with the oncologists.  Julia has had slowly worsening constipation issues throughout chemo.  It started to get bad when they had to increase her vincristine dosage (to almost double) because she had turned 3yrs old, therefore needing the child dose instead of toddler dose.  In response her intestinal tract muscles have lost their tone and her pelvic floor muscles are no longer functioning as they should.  So the plan? She starts bowel retraining tomorrow.  For the next three weeks she will receive miralax in everything she drinks.  They will x-ray her again in 2 weeks and if there are still problems they will add additional medications to the process.  Then we start with behavior and potty training.  That will be the harder part of it all.  We have a lot of control over the medicine she receives and very little control over her internal muscles and behaviors.  That will be up to her.  We are hoping with her age and typically cooperative nature she will be motivated to make all this work.

We had some time to kill before her next appointment, so we went up to the 9th floor to visit and so Julia could play in the playroom.  Then we headed to lunch in the cafeteria.  It is a great place to people watch.  Julia could not believe all the doctors, nurses, and med students in one place.  She was singing and performing for them as she ate.  She was so full of herself today.  We had a good time hanging out.

Then we headed over to the surgical part of the hospital.  Dr. Pranikoff was in surgery on a difficult case when we arrived.  We ended up being seen by one of his residents for her pre-op.  (Is it just me or do residents look like 13?) Everything looks great and they have decided to take her port out on Monday morning.  Dr. Turner came into to look over everything and sign off.  As of right now, it's a go.  They will call us over the weekend to confirm.  As we know from her last surgery, this is all up in the air based on the cases that come in overnight.  At this point we will go in at 6am Monday morning to meet with anesthesia.  She will receive general anesthesia and go into surgery around 7am.  They anticipate being able to pull it out using the same incision they made to put it in.  She was a riot while we were there making her new dog talk and interact with everyone.  Then she went back to singing.  The halls of the surgical clinic were filled with the sound of her singing/humming, whatever it was.  Everyone seemed to enjoy it and we left a lot of folks smiling.  It never ceases to amaze me on days like today she cries so much at home and sings constantly at the hospital- isn't it supposed to be the other way around?

She had time to play with her friends this afternoon which made her day.  Mommy was able to take a much needed nap (thanks Annmarie!) to get through the rest of the day (she even fed us all dinner).  Julia never made it to Awana.  She ended up crashing in the car around 6pm.  I brought her home for a quick shower, snack, and stories, and she is off to dreamland- hopefully for a good night's sleep- for all of us.

So only one week left of mask-wearing and avoiding germs.  Hard to believe! God has been so good to us this winter.  She has not had so much as a sniffle since her last hospitalization in October! That will never cease to amaze me.  Only God.  Her little world is about to get a whole lot bigger.  I'm so excited to see her be able to enjoy the simple pleasures of life again and just enjoy being three.

Snow, Soccer, School, Super Bowl... and more doctors.

Sorry for the lack of posts lately.  Things have been going well.  You would think all the snow days at home would have led to more posts... well kind of.  I have several in the works.  God has really been doing a great thing with our Believing God Bible study.  So great in fact, I am often at a loss for words and overwhelmed by the power of God's truths and promises.  I have multiple posts in process and will hopefully have them up soon.

We enjoyed our snow days at home.

(Okay, that's definitely the edited version.  We have enjoyed 90% of it and the rest we've tried not to hurt each other.) Though our 8 inches is nothing compared to the 3 feet our friends in VA received! Grandpa is having lots of 'fun' with it in Quantico.  It seems everyone around here has had enough of the winter weather.  Even the kids say, "it's not going to snow again is it?" We're definitely ready for spring.  By early March we are usually breaking out the short sleeves, so the spring dreamin' has begun.  It hit me the other day when we drove by a park that we have not played on a playground since June because of Julia's treatments and counts.  This spring and summer will be very different and we cannot wait.  Just thinking about it is almost too good to be true :)

We registered for spring soccer this week and got Carter's new cleats.  He is SO ready for sports season again.  The winter lull is such a drag for him.  Julia had wanted to play, too but I think this season may be a little too soon.  We want her port out and bowel issues under control first.  Hopefully by fall she will be healed and ready to go.  I cannot believe the spring season starts in a month.  Bring on spring we are ready! 

So last week we tried to make the most of it.  Unfortunately the cold rain turned the beautiful, fun snow into a muddy slurpee- not cool.  We were able to finally make some snow cream.  The kids thought it was very cool.  They love eating snow as is, so this was even better.

We're trying to get back into a regular schedule with homeschooling.  Carter does so much better when we are doing it regularly.  The first day back after a lull is an adjustment.  Last week on day 2 he said, "Wow, when I don't complain I get that all done so much faster!" Revelation! Hello?! At least he noticed the difference.  I really can't complain.  He is a great student and I have enjoyed so much watching him grow over the past two years.

Recently he has made several huge leaps.  He learned to read at 3 1/2 and was excited about it for the first few months.  Then he started to get frustrated and annoyed.  We backed off on direct reading and focused on other subjects.  We started back a year later and he made good progress.  Just recently he has been reading everything everywhere.  All the pieces have just clicked in his brain.  The same thing happened with writing.  He has not been a big fan of handwriting.  At 3, he told me he didn't need to write his name because he could just type it.  Though the future is definitely in computers, he will learn to write.  We trudged on.  He learned to write all his letters, but his perfectionist tendencies frustrated him.  He preferred to write in capitals all the time.  I let it go, just happy he was writing.  Now at 6, with no instruction, he is writing properly and neatly (using lowercase).  Something just clicked.  Anyway, more on homeschooling later.  I've had several people ask recently what we are using and I have a post coming out soon.

I have not started working formally with Julia.  She has been through so much this past year that it really complicates the entire process.  Fortunately she is surrounded by books, games, arts, music, Carter's school, etc. and she has picked up so much on her own.  She learned to write her letters from a Leapfrog DVD and an iTouch app.  She is starting to sound out words, but we haven't taken it past that.  I don't want to frustrate her or draw her into situations where we will likely clash.  I also don't want to require more of her than she is able since she has kind of been frozen in time developmentally. 

Since she began healing from chemo we have noticed that as the side effects in her personality and mood have disappeared, they have been replaced with new ones.  Three's are an interesting age.  They are so passionate, emotional, dependent and independent at the same time, creative, innovative, and often whiny.  Julia pretty much missed her three's with surgery, radiation, and chemo.  So it feels like we are making some of that up now in a higher speed.  If it's possible, she is acting like a 3 yr old and 4 yr old at the same time.  She is starting to notice the differences in her life as she feels better.  Last week at Awana, she looked at me and said, "Mom, how come I'm the only one whose mom has to come with them?" She knows the reasons.  But she doesn't always like them.  As long as she has the port we are doing our best to protect her from germs and minimize her contact.  It is encouraging to know independence is something she is ready for now and is hopefully just around the corner.  For the past 11 months, she and I have been together almost 24/7.

We went to a Super Bowl Party on Saturday with some friends.  It was the first time Julia has been in a setting like that in many months.  It is still new to her.  She is used to playing with  2 or 3 other kids at the same time, but not navigating a large group.  For the first hour she wanted to be held.  She did finally get used to it and had a great time.  It is wonderful to hear happy squeals and see busy kids, something we cannot wait to be a part of again.  It's so nice to see her hangin' with her boys again :)

And now this is the week of doctors again, though not all for Julia.  Carter has his well-check and had to see our dermatologist to check an unusual mole on the bottom of his foot and one on the top.  Unfortunately Billy's family has a history of melanoma and he has had dozens of moles removed- several abnormal.  So in addition to liberal sunblock use, these checks will be a regular part of our kids' lives.  I am happy to report the two moles on his feet looked fine and he is good until next year.

Wednesday, Julia and I will be spending the day at Brenner's.  In the morning she will be seeing GI about her bowel issues.  Ms. Diane and Dr. McLean are at a loss to what is going on with her.  She is only functioning when on the miralax.  We have tried to get her off of it several times with no success.  Everything else in her diet, activity level, health looks great and we can't come up with any explanations.  Diane called GI to get an appointment with the doctor they like.  He couldn't see her until the end of March.  They said she can't wait that long.  So on to plan B.  They did get an appointment with the PA in GI that they are comfortable with.  So she will see her and after we talk and she checks her she will consult with the doctor (who is in clinic tomorrow), so we worked around it.

In the afternoon she goes back to see Dr. Pranikoff, the surgeon who removed her kidney, tumor and put in her port.  He will do her pre-op appointment for port removal.  I still can't believe we are at that point! It could come out as early as next week.  We have to make sure GI won't need it for anything they want to do.  Please pray for wisdom tomorrow in making all these decisions.  Once her port is out so many freedoms will return.  We won't have to be so careful about germs and fevers.  Getting sick will be normal and not a medical emergency. We are on the edge of another big step in this journey.  Tomorrow we should have more of a plan...

Another Snow Day, Really?!

I can't believe we are playing in the snow for another day.  I love it! And the weather has been perfect for it- so warm and sunny.  Today we spent 4 hours in the backyard throwing snow balls, swinging, playing with the neighbors, sliding, snow painting, and building.  Today it was a snow fort...

 

One of the best things about snow is the fun workout you get.  Shoveling and hauling all this snow across the yard is some great strength and cardio.  Give me snow over Jillian any day! 

If you look closely you can see the snowmen from yesterday.  The kids tackled them and then we used the snowballs to make our walls higher, poor snowmen. Is that wrong?

  

We all had a really great time.  There's nothing better than a day when you can all just play like kids.  I still can't believe how much snow we have and how long it has lasted.  Now they are forecasting another snowstorm for the end of this week.  Could it really be?