Day 98 - Status 1B

Sorry I haven't posted this weekend.  I have been busy trying to make arrangements for discharge.  Meds require authorization, medical flights need to be scheduled in AZ, and I'm packing up 14 weeks worth of "stuff" into two suitcases.  It doesn't matter because we are two days from freedom!!  Owen can go outside without a gown (I'll still make him wear a mask).  The plan is to discharge Thursday after Carson and the kids fly in.  Owen isn't allowed to stay at the RMH due to his isolation status, so we have a hotel around the corner.  We will have a weekend as a family enjoying the amazing Palo Alto weather.  Owen and I won't be able to go home until Tuesday after his clinic visit.. but then we are HOMEBOUND!

Owen continues to do so well!  His neutropenia completely resolved itself which is amazing!  He is eating, tolerating feeds and gaining weight.  He seems like he is back to his baseline when we came in 98 days ago.  It's all just incredible!  Since he is doing so well, we dropped his listing status to 1B on the transplant list.  He still won't have any competition because there is no one listed in his size and blood type anywhere in the Western US.  I love that his blood type is B positive.. it suits him. :) The other great news we got was that his antibodies are still very minimal and there are NO voids on the transplant list.  With the Pseudomonas and blood transfusions we were nervous that those antibodies were going to spike.. another blessing.

The hospital librarian made his day when she showed up with the newest Diary of a Wimpy Kid book that she specially ordered for Owen.  It came in the nick of time.  He has read the entire series this summer and we can't wait to round off our stay with the final book.

Owen's appetite is making me so happy!  He can't stop talking about all the "non hospital foods" he is going to eat when he breaks free.

I caught a nasty cold this weekend and have worn a mask 24/7 (even in my sleep) to keep Owen safe.  I am over it now for the most part and will wear a mask for another few days to be safe.

Mr. Logi caught some nasty virus and had a tummy bug with fever this last week.  We had labs drawn to make sure he didn't have elevated WBC (indicating an infection) before they flew up this week.  He was awesome or labs and only whimpered a little but they got him in one little poke.  When I called the lab to let them know Logi was coming in they were so thrilled to hear from me.  They hadn't seen Owen in three months and we are usually there at least once or twice a week.  They feared the worst and I was so happy to tell them we'd be back for labs soon. Logi was fine and kicked his virus!

I can't wait to snuggle my other kiddos and sleep in bed with my husband.  Logi has been missing his Mama! 

We are so blessed!  I've read back on my blog posts from those days in May and hearing the words "we are losing him.. there isn't much we can do." I remember signing the consent to take him to the cath lab knowing that he was most likely not going to come out alive.  The pain... I am just so grateful. 

Team Meeting

We met with the team today and came up with a plan.  They all feel like it's in Owen's best interest to go HOME to Phoenix!  The idea is to LIVE life and not sit around waiting for a heart.  There are so many things that need to fall into place first.  It will take some time to get a plan in place, but tentative discharge will be next Thursday. 

 

Owen's status is currently 1A by exception.  He has severe CAD and a stent that has occluded once holding the LAD open.  He should be on a mechanical device but doesn't qualify for one.  If he had a device, he would be status 1A, so this is the basis for the exception.  We aren't sure if he will keep that status or be dropped to 1B yet.. the team is convening and they have to talk to UNOS as well.  Either way.. we can be listed at Stanford and wait in Phoenix.  We did this in 2013 and had 3 life flight companies on call at all times.  When the offer comes, we drive 15 min to the airport and get on life flight and head over to Palo Alto. 

 

The team will be talking with our team in AZ to fill them in and have a plan in place.  How often do we need to be seen (probably weekly), echos, labs, ect.  There is plenty to discuss but nothing out of our 'norm'.  We have a whole new set of medications so they will start getting all the prior auths done on those now through the insurance so I can pick them up early next week.

 

A heart offer can come at anytime... so we just need to be prepared for anything. Part of me wonders if we'll even make it home in the next two weeks or if an offer will come before then.  Oh the unknowns...

 

I am terrified that something may happen outside the hospital but have to let go of fear and trust that everything will be okay.  Live life, make memories and pray that he stays stable.  They are going to provide me with discharge CPR training and kits to share with family/friends that will be around Owen.  Cardiac arrest is a very real risk again. 

To say this boy is happy would be an understatement!!

Goodbye Milrinone

The best news of the day is that we are officially OFF Milrinone completely!  We turned it off yesterday morning and he has done just fine.  He continues to gain weight and has more energy than he had coming here thirteen weeks ago.  I can't believe we have been here 13 weeks ... 91 days to be exact!  

 

They are doing his echo today and we started him on Enalapril (heart failure med). We added that to the Lasix, Aldactone, Digoxin, Prevacid, Periactin, Prograf, Myfortin, Iron, Plavix, Asprin, Coumadin and Epogen injections.  Owen is still listed status 1A (by exception).

 

Tomorrow afternoon we have a meeting scheduled with the team.  He has labs in the morning and we'll have all the data from today's Echo and EKG to make the best decision on how to move forward.  We would appreciate prayers and good thoughts as we have big decisions to make. 

 

Owen has been keeping up with his school work.  We started multiplication and he already has so many facts memorized. he is a quick learner. We explored the globe, continents, oceans, and are working on countries now.  My parents and Gigi sent him a microscope with tons of slides for science and he loves it!  I'll have the nurse help me make some blood slides tomorrow during labs. So cool!

Owen has a tooth hanging by a thread so he's deciding which nurse is allowed to pull it.  He is making bank on the tooth fairy this week.

Back home...

Kam is busy with school.  Carson is busy with work.  Logi has a tummy bug and isn't feeling great, but they are keeping him happy.  This was yesterday afternoon and he doesn't look to be suffering so I think he'll survive.  I miss this crew back home.  We miss home. 

What Next?

Owen has been feeling pretty great and that means we have been busy!  It's hard to put into words how remarkable his recovery has been.  He is completely off TPN/Lipids for over a week now and is gaining weight on his own.  He has been snacking on Jalapeno chips, bagel chips and chugging bottles of water throughout the day. He is tolerating his Gtube feeds of Liquid Hope which is basically an organic plant/grain based diet.

We dropped his Milrinone down from .25, to .2, and now to .1 (which is nothing).  He is showing us he doesn't even need the inotrope support. We will probably turn it off on Tuesday.  He is still sinus tachy (HR 150s) but that is just his baseline for the past 18 months.

What does all this mean?  No one knows yet.  I don't know if they will keep him inpatient on no support just to monitor him? Would he remain status 1A by exception due to his severe CAD? Would he be able to stay at the RMH due to his 'isolation status'?  Would we go back to AZ to wait? 

Please pray for our team and for our family as we have some big decisions to make in the upcoming week(s).  We want to make the best decision for Owen and weigh risks vs benefits.  I don't think that any of us thought he would have recovered to this point and it's exciting, but terrifying at the same time. 

Owen has been asking to go for walks several times a day.  Now that he has a few Pokémon that are over level 1000, he loves to go to battle them outside.

The art cart came around and brought paints.  Owen kept saying "I'm like Bo (Kam), I'm such a great artist.  It just takes patience and talent."  He doesn't lack confidence. :)

Amazon delivered his Lego Set that he has been saving for.  He was brushing his teeth yesterday during rounds and one of his teeth popped right out.  The tooth fairy visited and now he's ready to ask his nurse to pull his other loose tooth tomorrow.

He got a sweet package from his cousins.  Luke made him some Pokémon figures and a rubber band gun on his 3d printer.  So cool!  Owen keeps shooting rubber bands around the room and the poor cleaning crew is finds rubber bands everywhere.  He keeps telling me he is having a "great day" and how good he feels. 

Prayers have been answered.  There isn't an explanation on why this amazing heart keeps recovering like it does.  From Aly, to Owen, ECMO and a cardiac arrest... our entire medical team is just amazed.  Coronary Artery Disease is a very progressive disease and Owen's case is severe.  The fact that he is doing so well is nothing short of a miracle. 

Back home...

Kam has been busy with school and taking care of Logi.  He always has his little hands wrapped up in her curls and snuggled close.  He misses her madly while she is at school and clings on to her when she is home.  We chat with them several times a day and it feels like we are all together.  Carson is almost done with his busy season at work and we can't wait to be together in less than two weeks!!  Our entire family of five together again! 

Life is good and we have so much to be thankful for!

A New PICC

Owen was a champ and has a new PICC line placed.

At around 10pm last night, just before going to bed, Owen noticed his pillow was soaked.  We searched his lines and couldn't find a leak.  A half hour later, it was soaked again.  We looked around with the nurses and found that his new PICC line dressing was soaked inside.  We took down the dressing and flushed his line to find that it was leaking at the sight (through his skin).  Major bummer.  Vascular access capped it off and we redressed it. 

Since he is dependent on Milrinone, we had to place a Peripheral IV.  We tried his arm and failed.  Then went for the wrist with success.  Owen was so brave and didn't cry or flinch.  He was breathing quickly and super nervous.. but brave.  He kept asking if we could just wait until morning.  He got through it and said it barely hurt.  He caught some Pokémon while he was getting poked and prodded.

This morning Vascular Access came back down and tried to troubleshoot the PICC.  There was air coming out of the Milrinone lumen which meant there was probably a crack in the lumen.  We scheduled a trip to Interventional Radiology and had Cardiac Anesthesia on board.  We gave him some Propofol to put him to sleep and he kept saying "Mom.. always remember I love you!"  Then as he was pretty much out, he said "tell my Mom I love her so much."  My heart melted, he got a kiss and I went off to wait.

Half hour later and he was done.  I was thrilled that they were able to rethread a new PICC in the same place because it draws so well.  Owen loves waking up with Propofol and Ketamine in his system.. he must love the high. 

He caught a few Pokémon in recovery but it wasn't until we got back to his room and settled that he caught his final Pikachu needed to evolve into Raichu.  He was so excited!!!  It was the best surprise after a long 24 hours!  Thank you for all the prayers.  They don't shy away from telling you the risks involved with sedation and anesthesia when you are in heart failure.  Thankfully he is well compensated on the Milrinone. 

We have a new clean PICC line and we'll find out how well it works for 6am lab draw tomorrow.  Owen was starving and has piled through two bags of Jalapeno chips and two bottles of water.  The bravest boy I know! 

12 Weeks and Counting

I am happy to report that Owen has made a major turnaround once again.  He was so miserable and we have no explanation but he feels SO much better!  Yesterday morning he woke up and said "I feel so much better!"  He drank Orange Juice and powered through his school work.  He is loving using the typing program and is a whiz on the keyboard.  We got his electrolytes in check after dropping TNP and his other levels are back to norm.  We haven't had to adjust his Milrinone and he remains on .25 which is pretty amazing.  He had some big weight drops over the weekend but yesterday and today he has slowly gone back up by .1 kilos each day. 

We discussed starting him on Marinol (synthetic marijuana capsules) to help with his nausea and increase his appetite.  He is already on Periactin (appetite stimulant) 4x a day, which is not a small dose.  Today he ate two bags of Jalapeno chips and chugged water.  He seems to be tolerating his tube feeds, but I haven't pushed him too much.  I think we are all pretty impressed.

Today was his PICC line dressing change and he wasn't nervous one bit.  He chatted with the vascular team the entire time and acted like it was no biggie.  He is so tough! 

We walked more than ever this afternoon.  We lapped the first floor, walked in the atrium, walked the entire 2nd floor and then lapped the 3rd floor.  He was exhausted when he got back here, but I was so proud of him!

He has been doing a ton of reading for school and retains just about everything he reads.  He learned all about Ancient Egypt and we learned about Organisms today.  He can pretty much ramble every fact he read about... it's like his brain is a sponge.  I forgot half of what we read so I'm impressed.

Mr Logi man has been busy at home.  He has been clinging on Daddy and Sis a little more than usual and he can't get enough of his Mama's pictures.  I wish I could just scoop him up and love on him all the time.  My heart is aching to have my family back together... it's been 12 weeks today.

Shout out to Max and his family for the awesome Lego set.  Owen loves it and has been playing with it non stop.  Each day passes and a new one begins. We can do this...

Feeling Crummy

Owen hasn't been feeling well the past few days.  His poor tummy is hurting and he's been puking.  He also has been napping every afternoon and doesn't have much energy to walk.  I hate to see him feeling so crummy after we've had some good weeks.  We discussed in rounds the tummy issues today, the need more frequent Zofran and the change in energy.  The transplant cardio on today basically said we weren't going to increase his Milrinone as he doesn't show any congestions (his liver is at a 2 and he is warm and well perfused).  She also implied that his stomach issues and lack of appetite could be psychological and perhaps behavioral and wanted to know if Psych was involved.  I held it together but firmly said.. it's not behavioral. Oy vey!

He has lost a good amount of weight the past few days and his double chin is almost gone.  He was up to almost 59lbs and is down to 54lbs today.  I can't push his tube feeds like I need to because he feels so nauseated and yesterday I pushed him to the point of puking several times.  Feeling defeated.  Thankfully he drinks a good amount of free water and today even had some Orange Juice.  I'm following their suggestions of getting 1200mls in him today and we dropped his diuretics to twice a day lasix (dropped diuril and his third dose of Lasix).  They seem to think that will help his tummy issues.  I still think it's the Milrinone.. tomorrow we will discuss further.

The good news is that his Neutropenia (or ANC) has increased to a Normal level and we are starting him back on his second antirejection med!!  That is huge!!  His Hemocrit and Hemoglobin have increased as well.  Instead of starting him back on Cellcept, we are going with Myfotic which is supposed to be easier on his GI track.

Tonight we gave him another dose of Zofran and I'm going to get up every hour tonight and push a little bit of tube feeds since he hates to be hooked up to the pump. Anything to help him feel more comfortable and tolerate his feeds.  Poor guy.

Oh.. I almost forgot that today was the FIRST DAY OF THIRD GRADE!!!  I had planned to get a super cute photo of him in his yellow gown and backpack going for a walk, but it didn't work out.  We did get some homeschooling in .. math, reading, science and history.  The hospital teacher came by today and said he was too busy but he'd try again tomorrow.  Sounds like he may only get like 40 min of school a week which is so insane.  I'm going to call the school district tomorrow to see if they have the resources to send a teacher to the hospital to work with Owen the allotted four hours a week he got at home.

Logi had fun at the mall playplace.  I can't wait until the weather cools off enough that he can actually play outdoors.  He loves to wave at me when I call and say "Ma".  Oh I miss home.

Tomorrow is a new day.  Pray that Owen finds relief and that his team will be open minded and make good decisions tomorrow.  We continue to wait...

Tummy Troubles, Pikachu and Exploding Kittens

Another weekend is coming to a close. Where does the time go?  Time is just passing us by in here and I am in shock that August is half over.  It feels like May was a millenium ago when we first arrived in Palo Alto.

Owen's weight continues to drop since turning off the TPN/Lipids.  He's got a good amount of chub on him right now so I'm hoping they will give him a little time to build up to his full gtube feeds.  If not.. it's easy enough to start him back on TPN.  Owen had a double lumen PICC line so he has Milrinone running through one lumen and we almost capped the other.  I realized we'd have to push Heparin through the line to keep it clot free and then we wouldn't be able to draw his anticoagulant labs from it.  So we just keep it open and moving with some IV fluids.  It still draws beautifully and I don't want this little guy to get poked daily for labs.

We decreased the Milrinone from .4 to .25 and he hasn't been feeling so great.  I don't know if it's the wean or not, but he is more nauseated and tired.  I think we may just inch back up on it.  We will discuss at rounds today.  Again, it's a simple adjustment.  Zofran is the most amazing med when he is feeling so crummy and gives him pretty instant relief.  I have him up to 800ccs via gtube, so 70% of his daily goal.  We will get there.

I ran over to the hospital school on Friday and got Owen registered.  I sent over his IEP to Kevin and I'm excited to get Owen back to a routine.  School is good for him.  Kevin will come to his room as often as he can (maybe not daily until more volunteers start) and I have found some great homeschool options (thanks for all the advice)!

Owen has about 8 Pikachu now and is just waiting on one more to hopefully have enough candy to evolve into Raichu.  There is a daily craft in the playroom and we made Pikachu ears on Friday.

Uncle Rustyn was in town for work and Owen was so excited to see him.  He brought Exploding Kittens (the card game) and Owen loves it!  It is a super fun game.

Back home.. I talk to my kiddos via Facetime a billion times a day.  Carson took the kids to see Suicide Squad yesterday.  Logi slept thorugh the entire movie, which was the plan.  Owen has been counting down the months for the movie's release and can't wait to see it.  Hopefully soon....

Kam sent me this photo of Logi yesterday.  He loves to sit on the bottom stair and watch his music videos all day on the TV.  He is loving the Teen Beach Movie music videos and dances and sings along.

Tomorrow begins a new week.  Praying for some relief for Owen's tummy issues.  We will find his happy place soon.  The silver lining to August flying by is that my family will be here in just a couple weeks!!  Labor Day weekend can't come quick enough.

Stable and Strong

Owen continues to look good and has made huge strides this week.  He is up to 700ccs (23oz) of Gtube feeds a day and he is tolerating it well.  He still wakes up and pukes each morning but he is doing well the rest of the day.  Periactin (appetite stimulant) is really helping him overall!  The best news of the day is since his weight is up to 59lbs we are turning off TPN and Lipids today!!!  I am so thrilled!  I am hoping his taste buds return because he says everything tastes "off" lately.  I'll continue to push his gtube feeds and thankfully he already drinks more than enough water. 

Two days ago we decreased Owen's Milrinone from .4 to .3 and he seems totally fine. The plan is to decrease it to .25 tomorrow and hang out there for a while. It's hard to believe that 11 weeks ago we were barely getting by with Epi and Dopamine drip. 

Owen's labs looks amazing again this morning.  His WBC is still low and his ANC is at .67.  He is still being treated with monotherapy for his antirejection therapies.  His EKG looks good with no arrhythmias as well.  We found a sweet spot with 4x a day Lasix and once daily Diuril for diuretics.  So many answered prayers and Owen sends everyone a big thumbs up!  He is feeling pretty great!

Major thumbs down for continued Isolation.  That darn Pseudomonas, he had months ago, has us locked down for life.  Owen can do his walks but no going to school still.   If anyone that reads this does homeschool curriculum and has suggestions for 3rd graders (great reader, writing comprehension and math problem solver, struggles with phonetics/spelling) please reach out!  As of now, he will have the hospital teacher come bedside for about 20 min a day.  Clearly that is not enough for a 3rd grade student, so I need to come up with a better plan.  I'll also reach out to Palo Alto School district about homebound (hospitalbound?).  We'll figure it out but suggestions would be great! 

We are grateful for the ability to get out of the room for long walks.  Last night we went on a late night hunt for Pokémon.  Owen has 6 Pikachu already and he is trying to collect enough to evolve it into a Raichu. 

Back home... Kam is loving high school this year.  She has a challenging schedule and she loves it.  Logi has been keeping Auntie Sussy very busy and we appreciate her doing so much for this little munch.  Logan is keeping Sam well fed...

Larissa took him to the Dinosaur museum on Tue and he loved it!  There was a volcano and he kept saying "hot hot hot."  He panned for gold and explored the entire museum.  My little adventurer.

Yesterday was open bounce for toddlers at BounceU.  He played so hard!!  He is a physically beast and just went up and down the slides as fast as he could.  No fear.  He loved it!  This morning he tried a class at Little Gym, which Kam loved, but he is too little to "follow the rules" and just wants to explore.  I can't wait until the weather cools off and he can go to the zoo and run outdoors.  Thanks Larissa for keeping him so busy.. I wish I was there to do it, but glad he has you!

Life is good.  We continue our wait.  Owen continues to do so well but the reality is that his coronary arteries disease is severe and it's a progressive disease. There is no cure or reversal but God is working miracles in keeping him stable and guiding his team of docs. We are very aware that the outcome could be much different right now.  Feeling blessed.

We Can Do This

It has been a quiet weekend around here and we haven't had much to blog about.  Owen and I are finishing up season 2 of Jane the Virgin (which he loves) on Netflix.  I started watching Friday Night Lights which I love and is right up my ally.  If you have any good Netflix series for me/us to watch to pass the time.. I'm all ears.  I watched Gossip Girl for the five weeks that we were in the CVICU.  I finished Gilmore Girls at home with Kam.  Anything to help pass the time right?

Owen and I did a lot of walking this weekend.  I took a few shuttle trips back and forth to the RMH getting stuff faxed, mailed and caught up on Laundry.   We are both feeling a bit homesick and Owen let the tears flow yesterday.  We are coming up on 3 months inpatient and on isolation.  If anyone can do this... we can!

Everyone is thrilled at how well Owen continues to do.  I have him up to almost half of his goal gtube intake.  I'm trying to convince them to stop the TPN soon.  We have slowly chipped away on it this weekend.  He is gaining weight so rapidly and I think he will feel more hungry and tolerate more gtube feeds if he wasn't getting so much IV nutrtiion.  Labs today looked wonderful.  His WBC dropped again and we are still waiting for his ANC.  He is still very tachy with a high HR of 150-160. Other than those things....we are hanging steady.

Logi has been keeping Auntie Sussy busy.  She has been amazing taking him places during the day so he doesn't miss his Sis and cousins.  She attempted the playplace at the mall.. which he loved!

And obsessively used the hand sanitizer every few minutes... because we taught him well!!  :)

Kam is loving school this year!  She has some great teachers and challenging classes. We are still searching for the right car for her and she should have one by next weekend.  I am going to be so nervous with her driving to school everyday but excited about her new freedom!

Larissa took the kids to The Escape Room this weekend and they had a great time.  Looks like they #NailedIt and Survived!

This is my shuttle stop out front of the RMH.  This clown bench takes me back to my childhood.  Remember the old McDonalds' playgrounds with the metal bars around the Hamburglers hat?  I'm so grateful for the RMH at Stanford.. I don't know what I would do without it here.

We are all mising eachother.  This little guy has been finding my picture and crying big tears.  He misses his mom. :(  Someday soon we will all be together again.  Life is hard but we are so fortunate.  We can do this!!!  Staying positive and pushing forward.

Why does my 19 month old baby look so huge??  Stop growing!!!

Poke Hunting and Back To School

It's been 10 weeks of hospital living and Owen says it feels like 10 months.  He has been working so hard on being patient.  His dressing change yesterday was amazing!!  He had his Psychologist and Child Life working on his relaxation and distraction techniques.  He was super polite to the vascular team and didn't use any unfavorable language.  He came up with a list of "appropriate" words to use for when he was in pain or just needed to yell out a word... Shazam.. Holy Bat Crap .. Pikachu.  He used them a few times. :)  I'm so proud of him.

 

He has been loving his nurses lately instead of getting annoyed with everything they do.  It helps that they all love Pokémon Go and he has very lengthy conversations about it.  He is up and out of bed at least a couple hours a day roaming the hospital or outdoor atrium.  He has visited 102 Pokestops and has over 100 Pokémon in just one week.  Last night he had me walk 2km just so he could hatch his 5km egg and it was a really high power Tauros.  The excitement is contagious.  I'm sure people think I'm a weirdo walking around the hospital looking at my phone all the time collecting Pokeballs.. if they only knew they were for my boy.  He loves it when I come back in the room and tell him I found a new Pokémon that he didn't have.  

We started him on Periactin (appetite stimulant) 3 times a day and while he still doesn't have an appetite, it is taking away the nausea a little.  I have him up to 450cc of gtube feeds a day which is about 15oz of food a day.  The rest of his nutrition comes from TPN/Lipids.  We are slowly going down on those since his weight gain is so significant.  He is up from 46lbs to almost 58lbs in 10 weeks and has grown almost 2".  I am just amazed at the difference in him!  The goal is to chip off the IV nutrition and hopefully he will continue to tolerate the increase in gtube feeds. 

 

Labs today looked pretty great.  He is holding steady.  No new changes as we found a sweet spot and we are sticking to it.  We couldn't ask for a better place to be in right now while we wait.  

 

Back home..

Kam started her Junior Year of High School yesterday!  She had a fantastic day and her teachers are great.  She is begging for a car so she drive herself so I'm buckling down and seriously searching everyday.  Hoping something perfect will pop up this weekend.  This is a big year for Kam.  She has a lot of AP classes, she takes her PSAT this fall to try to qualify for National Merit Scholarships and then she will take the SAT in the spring.  We will be touring Stanford this fall and then ASU Barrett Honors College as well.  It's all very exciting! 

 

Wasn't this just yesterday?

Kindergarten 2005

Then we blink and here she is...

Logan is missing his Sis and cousins during the day.  I forgot to post this picture of the Busy Board they made him.  So cool! Kam painted the beagle on the bottom. Smartest idea ever!

Larissa has been trying to keep him busy all day.  A box is all a boy needs.  Thank you for taking care of our little munch!

He was thrilled when the teenagers got home from school! 

Life is good.

 

Dec My Room

Last Friday afternoon Owen had a special visit from the organization, Dec My Room.  Allison (Child Life) came by the week before and asked Owen all of his favorite things. His ideas were a modgepodge of Superheros, Star Wars, Pirates, and all things boy.  The volunteers showed up on Friday with new Batman bedding, tons of wall vinyl, Star Wars Legos and this little robotic dino (which he loves).  He was so thrilled!  He told us where to put up all the vinyl and loved watching his room transform.

Thanks for Dec'ing Owen's room out!  He keeps saying how he feels like "this is my home right now".  Indeed it is.  He is a bit more excited about it than I am.  His optimistic attitude rubs off on me and it's not so bad.  I think my favortie part of the room makeover was the big plastic storage tub that I keep in the closet to store his many things in.  It's the little things.