Fall Festivities

The temps have dropped into the 80s for the most part and it finally feels like Fall.   School is back in full swing and we are having lots of fun celebrating the last week of October.  This weekend we had an impromptu date night out with the kids and the weather was perfect enough to sit outside on the patio.   

I took the kids to our Ward Fall Festival and we all had a great time. Chili cookoff, Pie contest, bouncy castles, face painting, train rides, and we left exhausted.   Owen found his favorite cousin Gigi at the festival. 

After waiting for 15 minutes for a train ride, Owen refused to get on because he realized they were just a bunch of buckets (you know the classic ones they have at every Pumpkin Patch). So he humored me and let me take a photo at the Photo Booth setup instead. The kids had fun and Owen voted for the spiciest chili he could find. :)

We had another family party this weekend and these photos are courtesy of Gma Monica.  Logan was passed around all night and I loved that Connor was loving on him.  That, and it kept Owen from wanting to "take him down" every five seconds.  Good strategy Connor.

I love these kids so much. My kids have the best relationships with their cousins. We are super lucky to all live so close to each other too.  It's bittersweet to look at all the photos on the walls and see how quickly they have grown.  Don't blink if you have little ones.. it goes by SO fast!

We planned Thanksgiving, our Christmas party and my oldest niece is having a baby shower. If that doesn't make me feel old... geez.

The kids and I also made it to the MLH Halloween party last night at the Hospital.  They had a good time and can't wait for Trick or Treating this weekend. Ok.. Logi didn't have the best time he was not sure about any of it. :)

We  have plenty more festivities this week.. pumpkin carving, cupcake making, and school stuff.  Kam has PSATs tomorrow morning.  I have a million things to update and will find time, but for now.  Happy Fall!! 

San Fransisco

On our second day in Northern Cali, we headed up to San Fran for the day.  My kids love the Pier so we had some clam chowder bowls and watched the boats come in off the bay.  We saw the seals and then checked out the Golden Gate bridge and Alcatraz.  I almost got tickets for the Alcatraz tour but knew that it would be chaos with Logi being so small and Owen not wanting to do a whole lot of walking.   

We grabbed some ice cream and walked around for a while and then left to meet Auntie Janessa at Delores Park.  That was the plan at least... but since parking was at a prime we decided to pick her up on the curb and go to a café to visit.  Since Janessa had a biology test we decided to head to the city college to drop her off.  My GPS took us on a long scenic tour around the city.. gorgeous!

We loved visiting with Janessa and the kids loved seeing their Auntie. 

On our way back to Palo Alto, we detoured to Half Moon Bay, but ended up stopping at Pacifica State Beach.  Owen was soaking wet as he played in the freezing cold waves and mud.  This boy of our loves the ocean!  Logan was not as thrilled with the freezing water.  Kam found lots of baby crabs for Owen and it was a fun impromptu stop at the beach. 

We headed to Stanford Mall in Palo Alto, in time to grab some Chipotle to go.  We crashed in the hotel that night and Logan slept for the first time ever, all night long!  I guess we wore him out.  That, or he just knew I needed plenty of rest before Owen's early morning Biopsy the next day. 

It was a fun trip and I'm glad we were able to spend some time together for fall break.  Sometimes it's nice to have a little fun during our frequent trips to the hospital.  I already received the call to schedule our next trip mid January.  :)

Pacifica and Palo Alto

We decided to take the entire family of five to Palo Alto with us this time around.   Kam was on fall break and we all needed a little getaway from the desert heat.  The trip started out a little crazy when the airlines computers crashed as we were checking in.  The lines were long but we made it to our gate with about five minutes to spare.  This little monkey loved the plane!

Our original plans were to drive up to Half Moon Bay after our plane landed.  We detoured to Pacifica when the GPS discovered an accident on the one lane road into Half Moon Bay.  We ran into Rockaway Beach and decided to stop and watch the massive waves crash into the rocks on shore.  Owen loved it so much.  He stood there yelling at the waves for a good 30 minutes while we waited for a table at a café nearby. 

After lunch, Owen really wanted to go to a park or the beach.  There was a heavy fog in Pacifica so we decided the park would be a little warmer. 

I texted a fellow heart mom and friend who lives in Pacifica and they suggested we meet at Frontierland Park.  The weather was beautiful and sunny.  We were in the pines and there was tons of green grass... Pacifica is gorgeous.  Logi got to swing for the first time...I think he loved it!

Owen was so excited to meet Josh too!  Allison and I met through blogs when the boys were babies.  Both boys were born with HLHS just a few months apart.  Josh went on to have all three surgeries and Owen moved onto transplant.  Now Josh has been evaluated for Transplant at LPCH and he is holding steady until he is officially listed.  Owen, Josh and his brother Sam, played at the park pretty hard for a couple hours.  We didn't see them as they were off doing boy things.  It was fun to catch up with Allison and Jon, I'm so happy they were able to meet us last minute.  Owen had so much fun playing with Josh and is excited to see him again.  This is a photo of two very brave boys!

We headed out of Pacifica and back to Palo Alto in time to check into our hotel.  It was a stay in and order pizza kind of night.  Tomorrow.. we spend the day in San Francisco.

Biopsy Results

We made it HOME this evening from our Fall Break adventures.  I'll post about our trip tomorrow, but wanted to wrap up Owen's biopsy results.  The biopsy went a little longer than usual (about 90 minutes total) and when they came to report to me a few docs came with our Cath lab doctor and pulled me into a room.  Turns out they just wanted to listen in and things were okay.  Owen's blood pressure did drop really low while under anesthesia (50/28), so they woke him up quickly and he was alert for the tail end of the biopsy while they apply pressure to stop bleeding in the femoral vein.

During the biopsy, Dr Peng has to work on his stent in his SVC.  His RA pressures were at about 20 and the stent was "clogged".  She used a balloon and dialated the stent and it dropped his pressures down to 2.. so they are perfect.  We'll just continue to keep an eye on that stent.

In recovery, we had to stay an extra hour or so to watch for bleeding and to make sure his Blood Pressure stabilized.  It's still real low at about 80/52, but he isn't symptomatic so no one is hugely concerned.  I'll keep my eye on it at home.

After the biopsy we met up with the fam and headed to Olive Garden for a quick lunch.  Kam wanted to go to the little shop in Downtown Palo Alto that has Japanese candy and bought some gross candy.  Then we headed to Cheeky Monkey to let Owen pick out a small toy.  The kids were happy and we headed back to the hotel for a quick break.  An hour later, we headed to the RMH to visit and for dinner.  Owen LOVES running around and checking everything out.  He really misses living there..

Not only was there free dinner, but the kids decorated a Christmas tree that is auctioned off and it was BINGO night!  Owen won toy trucks that he shared with Logi.  We had a good time and were exhausted from our busy day.  Not too tired to run into Sprinkles across the street for a cupcake. 

This morning was an early morning cardio clinic visit with Dr Almond.  Our normal cardios were out and not on service, so it was a quick visit.  No med changes and his echo looks the same.  His right vent looks decent and his left vent is still enlarged with elevated pressures.  I asked at what point we will have a good idea of how his heart will recover and everyone tells me about 1 year after his "episode".  In the meantime, he is tolerating the low BP and elevated HR.  We saw HRs in the 135 to 150 range while monitoring him over the last two days... so time will tell if they will ever drop down to norm. 

The plan is to come back in three months (mid January) and we will do another annual biopsy so we can check coronary arteries.  They have looked good up til this point but as Dr Rosenthal told us at our last visit... looks can be deceiving.  CAD (Coronary Artery Disease) is a post transplant complication that can show up at anytime and early detection is key in treatment to avoid re-transplantation.  I am hoping they look great, but I think the team is still trying to pinpoint a cause for his severe biopsy negative rejection episode.  A mystery unsolved.

I just got a call from our NP and Owen's biopsy was 1A, which is about to close to zero as you can get.  YAY!!  His antibodies continue to be low and so we continue to avoid treatment (IVIG) for those.  I think that about covers it.  Another successful visit over and done with.

We had a crazy flight home and Kam got a full pat down.. ugh.  Logi entertained the other passengers on the plane and Owen fell asleep.  I'll post about our adventures tomorrow. :)  Thanks for all the prayers.  :)

Biopsy Time

The last two days have been wonderful days vacationing in Northern California.  Our entire family of five flew to Palo Alto to enjoy fall break together.  This morning, Owen and I made our way to the hospital for another Biopsy.  I took Owen back to the cath lab about 9:15.  He has been nervous and that makes me a nervous wreck.  He was brave, as always, and went to sleep while listening to FUN. on the radio.  He is such a sweetheart.  I love this boy of ours!  Lots of prayers.  They may need to place another stent in his SVC (Superior Vena Cava).  He already has a stent that was placed post transplant, where the SVC meets the Pulm artery.  Now his SVC has narrowing further down (seen on ECHO).  They will "explore" and do what needs done.   

This little boy has grown a little.  He is up to 44.5lbs and close to 48".  He is BP looked good and his HR is actually dropping a little.  He is still considered Tachycardic, but it is decreasing.  (Looking at the positive).    He insisted on wearing his Capt. pajamas to the hospital this morning and he always loves to stop and look at the new construction display in the basement.  He always find fun in the little things. :)

Prayers are appreciated!! :)  I'll keep you posted.

WICKED

Kam and I have been wanting to see WICKED for a while now.  Daddy works at Arizona State University so we scored a small discount and were in the front of the balcony.  The show was pretty AMAZING and we had a great time.  I'm so glad I have a daughter who loves Broadway musicals as much as I do.  We are already planning our shows for 2016.

Saturday afternoon we decided to sneak out and see Hotel Transylvania 2 while Daddy and Logi were napping.  It was super cute and Owen laughed hysterically while eating his overpriced "Bunchy Crunch" and soda. 

Owen has one more week of Fall Break and then it's Kam's turn.  We have a fun family vaca planned and I cannot wait!

9 Months Old

Nine months have come and gone.  This little boy brings so much joy and laughter into our home.  He is silly, sweet and naughty all at the same time.  He loves to explore and examine everything in his path.  He crawls and cruises around furniture all day, but his favorite activity is climbing up the stairs at least 100 times a day!  He is happy the majority of the time and has the most adorable "fake" cry you've ever seen.

 From the moment he wakes up he plays hard.  He doesn't stop moving until he climbs up on your lap and stops to snuggle.  The snuggles are the best and he will just lay his head on your shoulder. He is so chill and always goes with the flow of things.

 We are all caught up on vaccinations and he already received his first two flu shots!!  At his 9 month checkup he was 23.8lbs (94%) and 30.75" (99%).  He is right on target for all his milestones.  He is babbling (Mama, Dada, Baba, NahNah).  He has five teeth and number six is popping right in.  Stop growing!!

 This is a typical day for us.. up and moving.  He loves to play with toys, tupperware, and toilet paper is my golden ticket when I just need a moment of peace.  He will just sit and unroll an entire roll, slowly, while examining each rip and tear.

 Then there is this little monkey that likes to help with cooking, cleaning and dishes.  He chases the vacuum and climbs on it while I am cleaning.  He jumps in the dishwasher while I try to load.  He is in the dryer as I'm trying to do laundry.  Hopefully his enthusiasm will continue as he gets bigger and he will be my tiny chore master.  Not holding my breath. :)

Happy 9 Months to my Naughty Little Monkey!

Fall

The first day of Fall has come and we are still waiting for the triple digit heat to go away.  Owen is officially on Fall Break for the next two weeks, but he never really goes to school too much anyway.  We started Homebound school and his 1st grade teacher comes in the afternoons and he is doing so great with it.  He just goes to school for socialization when he is up for it.

I have been so busy every day that I barely even have a chance to login to FB and check on my people.  There is an hour of calm when Logi naps in the morning and I race around the house as fast as I can getting as much done as possible.  Right now is "nap time' even though he is crawling around the computer chair trying to get his hands on everything he can.  He is such an inquisitive little monkey.

This past weekend was busy.  First we crashed Daddy's work party at the bowling alley and Owen kicked Daddy's butt (or at least we let him believe he did).

Kam and I observed and chatted about Homecoming... to go, or not to go?  A few of her friends decided to go, but the majority bowed out this year.  I promised her I'd spend that money on new boots and make up instead... she was happy to bow out as well.

She ditched the Homecoming game and we went to Grandma Monica's surprise birthday party at San Tan Flats.  It was a fun night with live music and some dancing may have taken place.  The cousins had fun, but by 9pm they were all super tired.  Happy Birthday Monica!

Lucy was baptized on Saturday and so we went to celebrate her day!  We had cupcakes and candy afterwards and the kids played in the cultural hall.

Sunday we had a total down day.  Owen has been feeling lazy and tired lately.  His BNP (heart failure number) has been increasing over the past few weeks and we have been chasing his rejection med levels.  We are the lab at least once or twice a week and I am hoping things level out soon.  Owen has a biopsy at Stanford on the 13th of this month so I'm anxious to see how things are going.

Today is October 1st, so my kids are wanting to get all our spooky decorations out and get into the Halloween spirit.  I think it's time to buy a few pumpkin spice candles as well.  Owen was so excited to be Kylo Ren for Halloween, but the excitement wore off before October 1st.  Now we are onto the next big costume.  I'm sure he'll change his mind about 10 more times before the 31st. Whatever this boy wants... he is passionate about Halloween. :)

HAPPY FALL!!!