(Almost) Fall

This past week has been better.  The weather is cooler in the mornings and we had a few days where we didn't hit triple digits.  Fall is coming!!  We discovered the Desert Botanical Gardens this weekend and it was pretty nice.. until it got hot.  Kam volunteered and Owen was in the MLH calendar photo shoot.  It's always great to catch up with fellow heart families and I love seeing Kam's love of service and volunteering.  

Owen has been doing pretty great, aside from the occasional headache.  He had his first dental appointment in months (no dental work for six months post transplant).  He still only has that one tiny cavity on his molar and will need to go to Phoenix Children's under cardiac anesthesia to have it filled.  It seems so silly, but they can't do anything in the office with his heart.  This was the first cavity of all three kids so I'll take the good luck and run with it.

Kam went to her Senior year Homecoming this weekend.  She had a great time at dinner but could have skipped the sweaty, loud, dance.  I'm pretty certain she'd rather be doing Physics club or Calculus than jumping up and down at a dance.  I love this girl of mine.

This wild man loves to "go ou side"  I love watching him explore and learn.  He is loving chalks, paints, play dough and stickers.  He is a perfect mix of my other two kids with an extra dose of his Mama's high energy.  He loves to play!!  Nap times are far and few between, but he has been sleeping well at night so that's a big bonus.  His speech has exploded lately and I'll have to get him on video soon.  He asks a lot of questions!!

Last night was Owen's pack meeting for Cub Scouts and his group was in charge of the carnival games.  Owen and his friend were in charge of the ring toss game.  I think he had a good lesson in doing service last night.  He really wanted to just go around and PLAY all the games, but I explained that he was doing service and he was in charge of his station.  At first he seemed a little bummed but he embraced the opportunity and had a great time.  I may have found a little goodie bag full of empty candy wrappers that he and his buddy were munching on.  Oh my. :)

This girl kept her brother busy on stage.. he may have ate his entire body weight in sugar before the night ended.  Cupcake walks, candy from each game won, and he was wired!!

Speaking of sugar.. do any of your kids just eat brown sugar by itself.  SO GROSS!  I only let him have one finger taste and I bribed him with some Guacamole (his favorite).  No wonder this little guys has so much energy... SUGAR RUSH!!!!  Kidding aside.. he does eat real food too.

I hope your (almost) Fall is going well.  I am so excited to start getting out the pumpkins and fall colors... ten more days!!

IEP

It has been an emotionally draining week for many reasons, but I am choosing to focus on the positive.  I had Owen's IEP meeting at the school yesterday and that was overwhelming but I know what I need to do to help him a little more.  I will say that the Neuropsych testing done at Stanford was eye opening and well worth the many hours of testing!  The positive is that he is super smart, has no attention issues and his behavior is great.  He is excited about learning and soaks it all in.  From just a few weeks in school already (at home), he is keeping up with the fourth grade curriculum we throw at him, but we can't ignore the fact that he has such a rocky foundation.  With all the gaps in his education from the beginning, he missed so many of the fundamentals.  Psychology proposed we go back to the basics, have him master each skill, and he will likely move along very quickly.  This way we can pinpoint those gaps in learning.  In the IEP meeting, I pushed for more consistency and a more fluid plan on how to help him moving forward.  Do I keep him up on the 4th grade curriculum, while his tutor works on the fundamentals, or vice versa.  Right now, I feel like he is jumping all over the place and I fear we will just develop more gaps. There was much more involved with the Neuropsych eval, but it comes down to he is below average in spelling/math fundamentals, average for reading, and he has great potential! My main goal for him is to get him caught up or at least in a good steady pace, where he can return to school and feel confident with his ability to learn alongside his peers.  I pray that he will continue to enjoy learning without feeling completely overwhelmed.

My next step is to speak with the special ed director at the district and come up with more support for him at home (ie: making curriculum accessible to me).  

This morning we had early morning labs to check the levels of his new medication, Sirolimus.  No mouth sores yet as we are on day 3, but I had some amazing heart mama friends give me great advice on ways to prevent the mouth ulcers while on the medication (which is long, long term).

The boys were great for labs.  Logi loves to "go to labs".  We were a hot mess today, but all the older peeps there had some morning entertainment.  We even ran into an Owen follower who was so sweet.

Mr. Logi has had a speech explosion and the things that he says are pretty adorable.  He's at the age where anything new that comes out of his mouth make us all crack up, so he says it a million more times.  He is obsessed with drawing on his body, but thankfully he is always a pig pen so he takes lots of baths.  Life with this boy is far from boring.

This week is filled with appointments and Kam needs to get a Homecoming dress for Saturday.  We just keep on moving forward.  So grateful to be home... working each day to be a better me.  Is September half over??

September Came in with a Bang

September sure came in with a bang.  I wasn't prepared and things have been a bit crazy.  Owen and I just got back from Palo Alto so I'll keep this short and sweet.  It was a busy couple of days and I am still processing all the information.  His biopsy results came back 1B rejection again, which is still "mild rejection" but serious enough that we have to take action.  Seeing that little red typing on his medical file stating "acute rejection" was just a little punch in the gut. 

 

I'm going to start with adorable pictures because that's what I am focusing on.  We started our Wednesday off with an 8am clinic, followed by Echo, a mini psych session with our favorite psychologist and then headed down to the Ford Surgery center to get checked in to preop.  Owen signs himself in now... Mr Independent.

He is always ready for a trip to the cath lab, which is good because we will be back in four weeks instead of 12.  Sigh. 

My favorite part of the day was heading out to dinner with these heart mom friends.  Continue keeping Cam in your prayers as he is still fighting with everything he's got!  He is on dialysis and fighting a few major infections.  He opened his eyes for me and gave me a wicked grimace, but the little hand squeeze was enough to show me he isn't giving up anytime soon.  That little guy has more fight in him!  See Brayden there in the corner next to his mama?  He has been waiting for his heart for 3000 days and counting... pray that his antibodies will go away and stay away... we can't wait to see him start to feel better. 

We were so excited Harrison came by to visit with us at dinner.  Harrison and Kip came to the hospital and gave Owen a blessing when he was so, SO sick.  They became fast friends with this little funny man and Owen just adores them both.   Pretty sure Owen was pulling his "hidden blade" out. 

Good news from the day was that his function looks great and his pressures were actually amazing (3 and 8).  His heart is happy... so why is there rejection!?!  It's so confusing. His team is coming up with a game plan.  No more steroid weans for a while so those puffy cheeks are here to stay.  His levels have been stellar, so we are switching up his anti rejection meds and going back on Sirolimus.  Sirolimus can help prevent the development of coronary disease in transplant patients and we used it from Jan to May of last year when he progressed from mild to severe, so I'm not super optimistic.  It also causes wicked mouth sores in Owen.. like 20 at a time.  Praying he doesn't have the negative reactions from the meds this time around because he's finally loving food and we are so close to ditching that feeding tube!

Thursday morning was my feedback session from the eight hour testing he did with Neuropsych.  It was overwhelming and so much information.  His intelligence is right on point and his IQ is smack dab in the average range.. so that is the awesome news.  I'll do a long post on this Monday because it's also our IEP meeting at the school and it will help me process it all.  I like to go into the IEP meetings with a clear head and ready to advocate. 

This weekend I am going to focus on hanging out with these three and focusing on the good!  Clear my head, process all the new info and get back into life on Monday.  Today I am going to catch up on my Chemistry labs and get a little ahead of the game before Anatomy starts soon.  What better time to jump into college right?  Anyone else need a vacation?!

Happy September!