17 August 2016

First Day of School 2016

Rainy weather couldn't keep us from our annual first day of school pictures this year!  We just moved them to the porch!

This school year, Oliver is in 3rd grade.  Bennett is in 1st grade.  And Avonlea is in the 3-6 year old class.

This year's picture looks a little different than previous years (click here to see: 2011, 2012, 2013, 2014 and 2015) because nobody is wearing uniforms.  

This summer, Brian and I made the difficult decision to move our littlest kids to a new school.

Last Fall, Brian and I moved Oliver to a non-traditional school environment due to concerns he was not thriving in the traditional school model.  It didn't take long for us to recognize that the Montessori school environment is a great fit for Oliver's 2e learning needs.

While we were so happy last year to have all three kids' needs being met between two great schools, it became clear to Brian and me this Spring that, for our family's sanity sake, we really need all three children in the same school. 

Brian and I thought about, talked about and prayed about what to do.  It wasn't even clear until a week or so before school began, we learned that there was a spot open for Avonlea and Bennett to attend Oliver's school.

Bennett's previous school community (teachers, students and parents) have been nothing but amazing so it's made leaving hard.  Bennett has personally felt tremendous love and support from his school and friends so he feels very conflicted with leaving.  

But one consoling factor to Bennett is that, at this new school, Oliver and Bennett will get to be in the same class with each other every day.

Montessori schools traditionally group children by mixed age levels, rather than by one grade level.  The thought is that heterogeneous ages in one class encourages cross-age-group learning and independence.  

For example, Avonlea will be the youngest in her class this year of children ages 3-6.  Oliver and Bennett will be in the same class of 1st, 2nd and 3rd graders.

There was some worry at first as to whether it would be beneficial to the boys to have them in the same class.  Would Oliver, for example, be more worried about his brother now that they were in the same class, rather than if they weren't? 

The school staff and Brian and I talked and agreed that Oliver already worries about his brother's welfare as it is.  Having Bennett with him there every day might actually help Oliver to worry about his brother less.  Now, Oliver can see for himself that Bennett is doing well.  

Not all siblings are invited to be in the same class in Montessori schools.  Sometimes, sibling sets need to be separated during the school day.  But everyone agrees that Oliver and Bennett are very tender towards each other, get along great and will likely be very helpful for each other.  Oliver can be supportive of Bennett's unique experience as a first grader with cystic fibrosis...and Bennett may highlight for Oliver ways he's capable when he might otherwise not believe he is  

This is the picture Avonlea's teacher sent me today of her hard at work.  The picture shows Avonlea using a spoon to move some acorns from one bowl to the other (fine motor skills work).  

Avonlea cracked Brian and I up today.  We kept asking her if she was looking forward to going to her new school.  She had just met her teacher the day before so we had hoped she was warmed up enough to gain some excitement.  Her reply was very confidently: "I'm not going to a new school."  

Brian told her this morning, "I hope you have a good day at school today" to which Avonlea replied, "I don't want to go to a new school. I don't want a new teacher."  

As we pulled into the parking lot, Avonlea explained that we would be dropping off her brothers but that she would be "going home and getting something to eat."  

She said goodbye to Bennett and did walk down to her classroom with me.  But she continued to stay outside the door and explaining matter of factly that she wasn't going in.

...that was until she saw her teacher who she had met a few days before...and until she saw the interesting "toys" (Montessori calls them "works") on the shelves.  

Then, like a bug walking into a light zapper, she went right straight into that classroom without a moments hesitation.  She happily gathered the materials most interesting to her and sat down at the table.  

I actually had to call her name to get her attention to wave goodbye to her.  She did nothing more than look up and say, "bye!"

So much for "not going to a new school!" Ha!

12 August 2016

Sigmoidoscopy with Dilation - Numero Quatro

Yesterday morning was our fourth sigmoidoscopy with dilation procedure to address Bennett's gastroinestinal stricture.  Bennett did well and the procedure went better as expected.  

The GI doctor was able to open the stricture to 15mm (it was 6mm when we started) and seems to think some of the inflammation tissue may have "popped" or given way.  

This is an improvement from our last surgery where the doctor was concerned it was not opening up enough and I was reporting Bennett's symptoms in frequency and urge to go to the bathroom were not improved.  However, this new improvement has given us more confidence to steer away from surgery for a bit longer.

There's such a part of me that would prefer surgery, just so we can have one procedure and get it done.  But, complications surgery may be the reason we are hear in the first place.  So, it's best that we hold off putting Bennett back under surgery for as long as possible.

The plan, for now, is to do another procedure in 3-4 weeks. The doctor hopes that this next she can open his stricture to 18mm and to inject steriods in the area to manipulate the stricture inflammation to go down.  Then, we will wait 4-5 months and reevaluate.

Our time at the hospital has gone well.  Bennett was a little combatitive and winey when we first arrived at the hospital.  I recognized he was feel anxiety and anger about having to be here. I was too, frankly. So, I stopped him and said, "Bennett, I don't want to be here either.  This is terrible.  I hate every bit of it.  But I need you to be kind to me and I need to be kind to you.  Can we be nice to each other today?"  Bennett seemed to respond well, almost like my having acknowledged his feelings was enough to let it go.  I had to let my frustrations go too.  I could tell how stressed and irritated I was feeling when I was packing the night before and talking to Brian.  In fact, Bennett often throws his frustrations on me.  And I throw them on Brian.  I'm thankful each of us are willing to be gracious with each other during these times.  Bennett enjoyed his new toy again.  I really appreciated a sweet nurses's disposition.  Our morning turned around and we were able to be present in the moment.

Things started going even better when Daddy arrived at the hospital.  Childcare issues meant Brian had to arrive late and leave early.  But it always helps to have another adult in the mix.  There's always someone to talk to the doctor and someone to talk to the child.  There's always someone to stay with the patient and someone to run to the cafeteria.  There's someone to help calm the other adult.  It just helps having Daddy there.

Bennett woke up from his procedure ok but seemed he may have been hurting.  In recovery, I asked if the nurse could give him tylenol.  Bennett needed to go to the bathroom so Brian and I took him.  When we got back, the nurse had fentanyl to give him.  I knew it was a strong med but I didn't think much of it until we couldn't wake him up a short bit later.  The fentayl is a great pain reliever but it's also a sedative.  So, Bennett's waking up process took considerably longer this time.  Bennett was very loopy for a while which was quite humorous to us.

Our hospital stay has been good. This time, I printed out a paper of "requests" to give to the doctor who was admitting us - requests like "please give mom permission to do respiratory treatments" and "please make pancreatic enzyme medicine PRN (to give as needed)."  These are small requests but if they aren't in the chart, they can result in frustrations between myself and the staff.  Nurses and therapists have to play by the rules very carefully.  So, it's important to set the rules up correctly.  And to do so, it's important to have buy-in from the decision-maker, like an admitting doctor.

Thank you to our friend, Amy Van Vranken, Executive Director of the Cystic Fibrosis Chapter in Dallas for sending Bennett this "epic balloon" (as he calls it) and little set of build-a-robot toys. It was a super fun treat to receive. ❤️

One of the greatest disappointments about our next procedure (other than its number 5) is that Bennett is going to have to have a colonoscopy prep to prepare for it. That means eating only clear liquids for 24 hours and then having a full colon cleanout (which includes loads of Miralax and lots of potty time).  

I cannot even express the knot I already have in my stomach about this.  I know the doctor is only wanting to be able to be the most successful she can by requesting that we prep Bennett appropriately.  She feels badly about it too. But it doesn't change that I am super disappointed that we will have to make Bennett go through this kind of prep again.

Our procedure isn't until September so there's no sense in fretting about it now.  Once we get discharged (hopefully in another hour), we will head home and focus on something much more fun: Bennett's first day of 1st grade next week.  Pictures to come. :)

10 August 2016

Ballgames for Bennett

For the past 3 years, Bennett has been named the honoree of the Annual Sonny Rose Memorial Softball Tournament in my hometown of Minden, Louisiana.  This year was a special year because it was the first time where our family could attend the tournament in person, which we were thrilled to be able to do!  

My friend Casey, in red, who I have been friends with since high school, reached out to me several years ago when he learned that our son had cystic fibrosis.  Having tragically lost his own brother, Casey explained he wanted to help us find a cure for Bennett so Oliver would never have to experience that kind of pain.  Casey has worked tirelessly since then to help us raise money for the CF Foundation in honor of Bennett ever since.

This year's tournament was it's 16th year and biggest ever with 33 softball teams and 8 wiffleball teams.  I understood it was a softball tournament but what I didn't realize, until I arrived in person, was just how involved it was to put on nor did I know how passionate the people were who played in it!!  

There were 18 coed teams, 15 men's and 8 wiffleball teams.  Although there were a lot of local players, some teams had come all the way from Texas and Mississippi!  The tournament began at 8AM and lasted until 3AM.  

YES!  Three o'clock in the morning!!

This is a picture of Casey's team, which was affectionately named, "In it for Bennett."  This crew won 2nd place in the Coed Division.

First place of the Mens Division went to team "Smash It" (top).  Second place went to "LA Hustle" (bottom).

See the boy in this picture?  That's Bennett.  Ok, look beyond him.  See the guy in the blue shirt?  That man spent all day outside in the direct sunlight and 100 degree heat as a referee for the softball tournament.  At the end of the day, when Casey and his mother tried to pay the man for his work, the man and his wife refused to take the money.  Instead, they said: "donate it to Bennett."

I came upon those words in the conversation between the man's wife and Casey's mom when I re-entered the concession stand where I had been working and where they were speaking.  I was grateful I overheard their conversation because I was given the opportunity to say thank you to this woman in person.  It was meaningful to be able to do so since I had already recognized that so many people I didn't know had graciously given and were currently giving of their time, money and energy to make this weekend successful for the benefit of my son - people I didn't know, would likely never meet and never be able to adequately thank.      

One such crew I never fully had a chance to thank were these little guys and their mothers who were sitting behind the batters box while our family (and a few sweet area volunteers) played a round of wiffleball in the Wiffleball Tournament.

I didn't have anyone to watch Avonlea while were were infield so I brought her some toys, put her on the bench in the dugout and told her to "stay put."  That worked for all of 10 seconds since she's 3 years old, so I was much relieved when I heard a sweet motherly voice from behind me ask, "can I go get your daughter and have her come sit underneath the shaded tent with us?"

I was so appreciative of the kindness of a stranger, one whom I inherently trusted (and later learned I actually knew).  I hated having to leave Avonlea in the dugout but I didn't know what else to do for her while we played.  In this mother's arms, Avonlea was able to sit behind homeplate and the chain-linked fence to watch our game while she, too, was being watched.

The game lasted only 20 minutes.  But I was proud of Bennett and Oliver for trying to play wiffleball, especially considering the 100 degree heat was intense. At one point, I yelled out to Bennett in the out field as encouragement.  One of the mothers from the tent of boys behind the batting cage (where I was playing the role of catcher) piped up and asked, "is that Bennett, the one who this event is raising money for?"  I smiled and explained that it was.  Several of the mothers let out a sweet sigh.

Bennett came up to bat a few minutes later and I began noticing cheers coming from this group of mothers and their little boys, all who were dressed adorably in matching purple and white baseball uniforms with their respective nicknames hot-pressured in gold to the back of their shirts.

The cheers made Bennett feel like a million bucks.  He swung at the ball and ran towards through the bases as fast as his legs would take him.  It was a memorable moment for me, a microcosm of the entire day: to watch Bennett joyfully experience life using his precious lungs, at a fundraiser hoping to get him a cure, with a group of strangers cheering him on.

The top picture is of the 1st place Coed team called, "Highly Favored."  The bottom picture is the winner of the wiffleball tournament, team "Nursing Home Mafia."  

These sweet men, known as the Nursing Home Mafia, played against our family in the Wiffleball Tournament.  After they smoked us, everyone lined up to give high fives.  When we were done, Bennett walked up to me with a new one dollar bill.  I don't know who it was but somebody high-fived him a dollar as a sign of love.  He was delighted as the surprise he received. 

One of Bennett's favorite part of the tournament was most definitely being a concession stand worker.  Not only did he appreciate the reprieve of being inside the cool concession stand and eating candy when concessions were slow, Bennett loved helping people at the window.

Another special moment for Bennett was when Kyle Pearson, who plays on Team USA for ASA softball, autographed him a softball to keep.       

This is Laci, Sonny's and Casey's little sister who organized and coordinated much of the tournament this year, despite that she's 9 months pregnant with a baby girl.

I wish I also had a picture of Casey, Laci and Sonny's parents Charlie and Susan Rose who worked diligently to make sure things went right.  Charlie played on our wiffleball team at one point but spend much of his time fetching ice.  And Susan ran here, there and everywhere trying to track down more quarters and Gatorade for the concession stand.

I also missed a picture of Geoffrey Orr, who also worked incredibly hard to make sure the softball fields were in ready-for-play condition (did you know they actually burn the fields to get them ready??)  There are others that I don't have a picture of that are worth mentioning, such a the sweet ladies and two youngsters who worked with us in the concession stand and who volunteered their Saturday to help us raise money for Bennett.  I have no doubt there are others I did not and will never know who helped and for whom I am thankful.

When it was all said in this year's 16th Annual Sonny Rose Memorial Softball Tournament raised total of $6,800 for the Cystic Fibrosis Foundation in honor of Bennett!

The next day, before Brian, the kids and I left Louisiana to head back to Texas, our family had a chance to have lunch with Casey, his sweet wife, Sarah, and their two children.  It was such a treat to get to meet Casey's kids, whom I had only seen in pictures and to get to see Sarah, who had been watching the children all day the day before while Casey was busy with the softball tournament.  They are such a sweet family.

Casey has his own children to care for.  His sister and his parents know many other people who they could fundraise for in memory of Sonny.  So, the fact that this family chose our family and our Bennett to support again this year is even more meaningful.

I couldn't help but think of Sonny this weekend.  His presence was noticable - how dearly he is missed and loved.  I grateful that Sonny's family chooses to turn their loss into life...their grief into giving...and their love of their own into a love for my own.

Sincerest thanks, Rose Family,