Siblings

For years after Kam was born, we struggled with infertility.  I was quickly diagnosed with PCOS shortly after she was born and we tried for years to give her a sibling.  Seven years later, when we quit trying so hard, Owen came along.  Six years later, a surprise came wrapped up in a ball of energy, known as Logi.  Don't let the age gap fool you because these three have the best relationship with one another.  I love watching them interact and especially watching Owen take on a big brother role now that he feels better.  I hope they are always the best of friends.

Owen officially started school this week.  He had been working so hard to get his reading, spelling, writing and math done each day.  It takes him a few hours in the morning and then he gets an hour of tutoring in the afternoon.  We had his IEP meeting scheduled for today, but they pushed it back three weeks. He still has weekly therapies and today we had a cardiology appointment with the AZ Transplant team.  His echo looks great and he's acting fine, so I'm hoping his biopsy in two weeks is perfect as well.  Oh and the best news of all.. he is up to 61lbs!!!!  That's all him, no tube feeds, just a normal kid gaining weight (with a little help from steroids)! That's 10lbs in 5 months since his transplant... amazing!

This weekend we drove out to my parent's house and spent some time with them.  Gigi taught Owen how to make slime, Logi raided "gam'pa" pantry, and we pretty much had the entire water park to ourselves.  Owen will swim until he sees a bee and then he's like "game over".  In his defense, he does get stung an awful lot.  We had a lot of fun and recharged for our week.

The end.

Normal and Boring

We are about {this} close to wrapping up August.  I think I am finally used to the triple digit temps this year and I am venturing out more in the heat of the day.  We have been hibernating this summer because it felt like my flesh was melting off.  I'm back to loving the desert heat, but won't be too sad when the temps cool off a bit.  I'm trying to think back on what we did this week and it was just a normal, boring week.  I will take normal and boring any day!

We did decide to double up on Owen's steroids for a few days and we also increased his Prograf quite a bit.  We had labs a few mornings this week and I am so grateful Owen is such a champ.  To be woken up at the crack of dawn to head to the lab with a toddler in tow.  Then to get poked and do it again two days later.  No complaints from Owen... he actually makes it kinda fun.  Then yesterday he had to give me a good scare but coming out of the play room, pale as a ghost, and puked buckets.  It was just enough to remind me that we are never "out of the woods" with him.  We checked BP, HR and I asked him a million times how he was feeling.  He seems fine today.

Every time anyone leaves the house, Logi yells "me go too!" and he gets his shoes on.  It make it a little difficult to explain why he can't go to work with Daddy or to school with Sis.  Thankfully he is still easily distracted and I can redirect him to something else.  Daddy, Rustyn, Kam and Owen went to Wonder Woman today so Logi and I had our own fun.  We drove around and I took him to the gas station, which is always so exciting for a toddler!  

 Looking at all these pictures I realize Logan is an awful eater.  Chips, soda, chocolate cake, which  he will tell you is his favorite vegetable.  I forgot how frustrating it is to feed a toddler.. it's been 17 years.  Owen didn't eat a lick of food at this age and was primarily tube fed.  The only food he will consistently eat is guacamole.. so there's that.  He is obsessed with coloring lately and draws all day long.  He is constantly bringing us a white board or markers to draw pictures for him.  Last night while Kam was at the football game he kept asking me to draw and would say "Not like that.. I do not like that.. erase that."  My stick figures were not appreciated.  Daddy and Kam do a much better job.

Does anyone's toddler HATE getting haircuts?  I can't stand my boys hair to look disheveled and he screams like we have removed a limb whenever we get the clippers out or mention a haircut.  Any suggestions??!

 Last weekend after Carson and I spent hours looking at Granite slabs, Kam took me to look at gyms.  She has hit a plateau and is tired of working out from home so we went on a gym hunt for her.  I think we found a good one and it's cheap.  After a year of driving on her own, she is getting pretty good behind the wheel.  I was only slightly nervous the entire time instead of completely terrified.

 Now this boy had a week.  He was super excited to start school this week... well.. that's an exaggeration.  He probably prefers not to start school.  He was dressed and ready to start his first day and then his teacher didn't show up, didn't call, didn't email.  We are four weeks into the school year here and he hasn't had a single lesson or IEP meeting set up.  I finally wrote a few emails to the district level and immediately got a response from both the teacher and the school psychologist.  An apology from the teacher as he was sick last week and we set up his IEP meeting for this Thursday.  He qualifies for Physical and Occupational therapy through the school so they will come out to the house once a week.  His teacher will come out four days a week after school, and we are working with the same teacher he had for homebound in Kindergarten so we know Owen likes him.  I'm not concerned about the IEP meeting because I know pretty much where he needs help and doesn't.  We  will do a little more testing at Stanford with NeuroPsych in a couple weeks while we are there, followed by a two hour feedback session.  I'm hoping that helps us fill in the gaps as well.  This boy is going to be caught up in no time! :)  He is just the sweetest!

That's about it for our week, normal and boring.  Just the way we like it!

Good News.. Rejection 1B

When we landed in Phoenix, I returned a call to our transplant team to find out that Owen does indeed have rejection.  We weren't sure the level of rejection or if he had antibody mediated rejection as well. The regular pathologist wasn't there so they wanted to wait until he could look at the slides before making a decision on what we were dealing with.  

Thankfully, his rejection is just cellular and it is a 1B.  Just for you non transplant peeps.. the scoring system is (in simple form):

 0 = No evidence of rejection

 1A = Mild Focal

 1B = Mild Diffuse

(the new scoring system puts 1A and 1B in a 1R category)

2 = Moderate Rejection

3 = Severe Rejection

We have only had one other 1B ever and it was just before we discovered Owen's coronary artery disease so I may still be a little on edge, but I'm trying to be positive.  Maybe we decreased his steroids too quickly, although he is still on a decent dose of 4mg, twice daily.  It could also be his Prograf (anti rejection) level being too low at 8, which is the lower end of his goal range.  We are increasing his Prograf and holding off on weaning the steroids for a while.  This coming after Dr Rosenthal, Nancy and I were discussing keeping him on steroids for the long haul.   Not a huge dose of steroids, but a low maintenance dose forever.  This may have just been our answer to that question.

We are celebrating that we are not dealing with antibody mediated rejection.  That is a whole other ball game.  We will make changes, echo in two weeks with Dr Z and then a followup biopsy in a month.  Praying this is a one time occurrence and we will be back to zeros again soon. :)  

I know our team is very aggressive with their biopsy schedule.  At times it feels totally unnecessary.  We wouldn't have seen this and we were set to decrease his steroids to once a day this week.  We were also okay with his Prograf levels being a little low since he looked good clinically.  Now that we can see his heart does indeed need this extra protection, I'm so grateful for these routine biopsies.. even though they may still make me a little crazy sometimes.

Biopsy 10

Owen had his 10th biopsy today and we are almost 5 months post Transplant.  There is so much love surrounding Owen and its evident with each person we work with. They all love my boy and that makes this journey a lot easier. He had one of his favorite anesthesiologists cracking jokes and he loves the entire cath lab team.  We had plenty of laughs before he drifted off to sleep.  He knows how many people love and genuinely care about him.  It takes a village. 

 The plan today was to do a routine biopsy and to check the gradient in the SVC.  He has a history of narrowing of his SVC and has had multiple balloon dialations and stenting.  At the time of transplant, the surgeon cracked open the stent to expand the SVC.  On echo, it shows narrowing jist above the previous stent so we had to look at it in the cath lab.  There was possibility of stenting or dialation today but thankfully hr only has a 3mm gradiant and we dont have to interevene unless it gets to about 8.  Something to watch.  We should have biopsy results sometime tomorrow.

 He was wide awake as they wheeled him back to recovery.  I think we will discuss biopsy without anesthesia soon.   Dr Peng said all went well and his pressures look slightly elevated but pretty perfect (6 and wedge of 10).

 Dr Rosenthal made a special trip down to the PACU to see Owen and do an impromptu clinic.  His labs are all perfect.  Electrolytes perfect, no anemia, no neutropenia, anti rejection meds are therapeutic....its just all too incredible.  His weight gain is fantastic (58lbs) and he's 51".  We have not used thr gtube in weeks and we have a goal of ditching the gtube before his 10th birthday in Jan.

We have some decisions to make regarding steroid wean and antirejection therapies moving forward.  So many good things.  We don't come back for four weeks!!!!

This pic is ridiculous but I love that it captures Owen in his element...so much laughter.  Sometimes we go crazy with lack of sleep due to delayed flights and early mornings in preop.

Swimming and Muddy Puddles

Summer break may be over, but we still have to stay cool in the desert.  My parents moved to a new house and the perk is that it comes with a huge waterpark, splash pads and high dives.  My kids were in heaven when we went out to visit and play this weekend. Carson and Kam braved the waterslides, Gigi spent half her time on the high dive, the boys just ran around splashing and I soaked it all in.  Loving my little family so much and feeling grateful to be home.  I'm sure we'll be spending plenty of time poolside as we venture into fall.  In the desert, you almost have to wait for the weather to cool down before you can enjoy the water.  

Monsoon season is my favorite part of summer in the desert!!  We had a wild Haboob come through this week and it down poured.  There was thunder, rain, cloudy skies... we went a little crazy with excitement!  Logi loves to splash in the "muddy puddles" (british accent like Peppa Pig).  We cooked out on the grill and watched the storm do it's magic.  If only we could get a few more Monsoon storms before August is over.

Happy August.

Is it fall yet?  I can only dream. 

 

Kam had a great first day of school and pretty much loved getting home by noon.  Owen has weekly PT and is doing so great with trying new things and pushing himself.  Logi loves to "go PT" and is the best little helper.  We have been out school shopping with Kam and getting things set up for school at home.  Our district started school almost two weeks ago.  After a little back and forth..a teacher was hired and he starts teaching Owen next week.  He'll have an academic evaluation on Monday with the district psychologist and then academic assessments next week.  We should have his Neuropsych testing results back in the next couple weeks and then we will be ready to update his IEP.  I believe the consensus so far will be to continue him on to 4th grade with his peers and offer him enough support to help him catch up.  He is going to have to work hard, but he is super smart and I know he can do it.



The other day Kam and I were out school shopping with Logi so we stopped at the pet store to let him look around.  He loved it so much!  We have to get creative with activities around here when it's a billion degrees outside.  Like I said.. is it fall yet?

Logi is naked 100% of the time and seems to be fully potty trained.  So much so, that last night I ran out of diapers for bedtime.  Now if we can give up the "Milky bottle" at naptime (which is basically a bottle with a sippy cup attachment). 

Owen is finally gaining weight and made it to 5% on the growth chart.. without using his feeding tube.  I am so thrilled!  We are cutting back on his steroids considerable in the next two months so those cheeks won't last much longer.  He has been busy with Cubscouts and is making friends in our new neighborhood.  I am getting ready to start the boys in swimming lessons and Owen is counting down the days until Cardio clears him for Karate.  The other day we were leaving the church and Owen asked if we could drive to the end of the rainbow.  I really wanted to say yes.

I am feeling grateful and happy.  Except in the mornings when I am working out.. I feel pretty much like I'm dying.  Happy August.



Senior Year

Senior Year!!  How is it possible that our little girl is now a Senior?  We couldn't be more excited for her.  This year is a full load of college credit classes.. Eng 101/102, AP Anatomy, AP Physics 2, AP Calculus and she's taking Gov/Econ online.  She only has to be at school until 11:30 most days and 10:30 on Wednesdays, which is so nice for her. She can volunteer, work, and focus on all those college applications. 

 And.. just because.. let's take a walk down memory lane.

Kindergarten 2005

First Grade 2006

 

Second Grade 2007

(I still cannot find these photos)

 

Third Grade 2008

 

Fourth Grade 2009

 

Fifth Grade 2010

 

Sixth Grade 2011

 

Seventh Grade 2012

 

Eighth Grade 2013

 

Ninth Grade 2014

 Tenth Grade 2015

Eleventh Grade 2016

This was the first year she just woke up, made her egg whites with avocado toast and drove herself to school.  It seriously goes by way too fast!!  Go get em' Kam!!