Stanford Visit.. LONG post!!

Yesterday started at 3:30am and didn't end until 11pm. I will be the first to admit that flying up and back in the same day was not the brightest decision I have ever made.  We were so exhausted.  We got to the airport at 4:30 to catch our 6am flight.

After we landed, we headed to the rental car center and picked up our car.  I thought it would be more convenient to reserve a car seat through the rental car company because they had to have safe car seats right?  Major ugh.  They brought me three options.. an infant seat, a 5 point harness piece of plastic from the 1990s that had a max weight and height limit of 35lbs and 35" and a booster seat that was just a piece of plastic with no cover and said he had to be 45lbs to use.  It took forever for them to track down a better seat, but he still weighed more and was way taller than the limit.. but I had no other choices.  I am never doing that again! 

Owen drifted off just as we left the airport and while I ran to Apria for oxygen tanks to get us through the day.  We made it to LPCH in time to play with the super awesome train set and eat lunch in the cafeteria.

Owen started with his echo, which he totally loves!  He asks a million times when his next echo is and just hops up on the table and is ready to go!  It doesn't get easier than that.

We headed to our room for an EKG and then talked to our transplant NP for a while.  I told her all about Owen's chest pain and how he gets really winded lately.  He sang her some songs so she could hear for herself.  She did a full exam and sent us over for an xray while Dr Rosenthal looked over all the data from today. 

Dr R. came in and we had a pretty long visit.  Owen's echo and ekg look the same... valve has regurge/stenosis and function is moderately depressed.  A comment was made that "it's a good thing we are trading this heart in soon." 

As far as the chest pain goes...
Owen had a full exam, Dr R listened to his heart and lungs, he felt his liver and all looks normal.  His chest xray came back showing nothing concerning or new where he says it hurts.  I'm going to watch him over the next week and see if it continues.  I'm not sure what's hurting or why... but just something to keep an eye on.

The good news...
Owen's antibodies came back ZERO from his last IVIG!!!  This is so huge on so many levels.  Owen's antibodies were 98% sensitized just 3 1/2 years ago.. a few months ago they were 30% sensitized.. and now they are 0!  The transplant team will still be cautious and if they do accept a heart that is positive for the antibodies that Owen has had in the past, they will use an aggressive IVIG/Plasmapheresis protocol in the OR at time of transplant.  If the donor heart is negative for those antibodies then we will consider him low risk and can possible cancel IVIG indefinitely. 

As of yesterday...all of his voids were removed from the UNOS database!

What does that mean?  Any heart that becomes available in his blood type (Bpos) and is between 30-90lbs, we can accept.  There is one other child listed in the entire western US with his blood type as of today.  Of course, that can change at any time.  I asked Dr R. what percentage of kids actually get a heart as a status 2, in his experience?  He said that maybe 10% get a heart as a status 2 because there are so many kids on life support and iv medications waiting and they take priority over donor organs, rightfully so.  He then proceeded to say, he feels that Owen is most likely in that 10% as of right now.  That is so exciting and we just need to do our best to keep him healthy!!

We talked about flu shot and immunizations...
Owen needs to get the flu shot, like always, and the entire family needs one as well.  Owen has to stay protected this year more than ever, and so there really isn't an option.  Owen also needs to hurry and get his 5 yr old immunizations a little early, but we can't do them until 5 days before his next IVIG.  Supposedly you want the IVIG out of their system, but the immunizations need time to work before the next treatment. 

 Speaking of IVIG...
Owen gets to go to a monthly IVIG treatment schedule now. His next treatment will be on Oct 19th and that will go on until he gets a heart. We won't know what treatments he will require post transplant until we get the donor heart.

Sildenafil Black Box Warning..
A few months ago, there was a black box warning released stating that Sildenafil {Viagra} in pediatric patients can cause sudden death.  Um.. scary!  Dr R. asked me if I had seen the warning and we agreed to take him off.  Owen is on Sildenafil to help improve his pulmonary pressures, but they aren't an issue now that we are moving forward with transplant, so we will wean him off.

Followup..
Dr R wants us seen by our local cardio monthly and we will go back to Stanford every other month.  So in two months, we go back to LPCH and we will also do a cath at that time.  There is a risk of putting him under anesthesia while in heart failure, but they feel the benefits will outweigh those risks, since he is stable.  He has a bunch more collaterals that need coiling since it has been over a year since we used cath intervention and he has never gone more than six months.  This may also buy us more time at home, keeping him stable, until transplant.  We also need to check his pulmonary pressures post Sildenafil wean to ensure that we aren't going to increase his Glenn pressures too much.  It's always good to have a baseline of pulmonary pressures prior to transplant as well! 

So that leave us with cardio and IVIG in October.  A trip to Stanford, cardiac cath and IVIG in November.  Maybe he'll get a heart tomorrow and none of that will even matter?! 

We left the hospital and made it to the airport just in time to get dinner and board our plane.  We arrived home at 10pm!  It was good to sleep in our own beds, but I'm not sure I'll try to do a one day trip anytime soon. :)

"My Heart Hurts"

In the wee hours of the morning, Owen and I will board a plane to Stanford. Owen has transplant clinic in the afternoon. It was my genius idea to plan an early morning flight and a same day, late night, flight home. I'm still trying to decide whether or not I should pack an overnight bag.. just in case.

Owen has been having chest pain, or "my heart hurts" is what he calls it. It all started last night and we were monitoring him and freaking out a little. My initial reaction was heartburn, so I gave him an early dose of Omeprazole and we gave him a Tums. It didn't work and he continued to whine. All his vitals were perfect and his breathing was normal. It continued into this morning and cardio advised that it's probably a muscle issue and to give him Advil. So I did.. it didn't help. This afternoon/evening has been much better and he is up and playing a little. I'm wondering if a sternum wire has come loose and it's poking him? Another reason I am glad we are going to be at Stanford tomorrow for cardio testing. It always gives me peace of mind.. or freaks me out. Either way.. I know!

Daddy gave Owen this handsome haircut a couple nights ago.. he looks so grown up each time we cut his hair.  We bought the Avenger movie that was released yesterday and have watched it about a million times so far!!  Love my Superhero loving boy.

On Monday, Owen and I got our craft on.  Owen helped me paint these little blocks and modge podge the scrapbook paper to them.  I did the vinyl letters and he helped with the embellishments.  I can't take credit for this project as it was last year's Super Saturday craft at church and I missed out.  All the stuff came in a kit for me to paint and assemble.  My kind of craft!! 

Tomorrow will be a crazy busy day, but I will post something at the airport in the evening I'm sure.  Can you believe Owen has been listed for FIVE weeks now??  That is 35 days on the transplant list.. time is cruising by! 

Even Superheros Need Sleep

Sometimes even Superheros need to sleep.  Owen has been loving to dress up in his Superhero costumes and wears them all day.  We have been looking for a black Venom costume for a while.  If you aren't familiar with Venom.. he is a villain in the Spiderman series and Owen loves him!  He is actually a symbiote alien that attaches to people and changes them.  He has a creepy long tongue and is really scary, but Owen has always loved him.  We found a black Spidey costume and we are going to change the mask up a bit to make it look more like Venom.  If you didn't know.. black Spiderman is actually the regular Spiderman after the symbiote takes control of Spidey. 

After walking around as Venom for the past hour pretending to be the Villain, my little Superhero passed out on the couch.  I tried to take his costume off.. but he growled at me.  I love that he is holding his mask in his little hand.  So sweet! 

It's {Almost} FALL!!

It is still 100 degrees out, but it is starting to feel like Fall!!  I don't have too many Fall decorations for our house, and I love crafts, so I was so excited to join the girls from LollyJane for a craft night.  My kind of crafts are when the wood is cut, the paint is ready and the vinyl is prepared.  All I have to do is assemble and hang out with friends.  My sister came with me and we had a great time.  I wanted to make these super fun little pumpkins made out of 2x4s.  It took me probably three times the time it took everyone else.. but I think they are fun!  The other side is plain orange so I am going to paint some turkey's on them for Thanksgiving.  

I have been craving pumpkin.  I don't like pumpkin pie and my sis-in-law suggested a pumpkin shake, but I'm not that daring.  I decided to bake some pumpkin bread yesterday and this was amazing!!!  I'll share the recipe below.  The recipe didn't call for any goodies inside the bread, but I added chopped walnuts in half and chocolate chips in the other half.  My house smelled fantastic and it was the easiest breakfast this morning.

Downeast Maine Pumpkin Bread from HERE.

 

Our weekend was great, but we are looking forward to our last week of September. Owen and I spent the morning at the park with some friends and now we are trying to get ready for the day.  I don't know what to do with Owen's mop on his head.  Yikes.  Time to get it cut.. like tonight!  Owen and I leave for Stanford this week for clinic appointments and my list of questions for the transplant team is growing.  I feel like I have a good amount of knowledge when it comes to HLHS, but I'm still trying to learn the transplant world.    



I am off to work on another craft.. again.. someone did the hard work for me and all I have to do is assemble.  I will share tomorrow. :)  Happy Fall Y'all!

IVIG Round 3 Complete

We are home!!

This round of IVIG went so much better!   Owen has been such a rock star through the entire process the past six weeks.  I seriously couldn't be prouder.  I taught him how to use his bed remote to call the nurse if he needed to while I ran to grab food and he said.. "see ya.. I'm fine".  I came back from grabbing breakfast in the cafeteria this morning and Owen says "I met my new nurse... she is really pretty.. do you want to meet her?"  I said sure... thinking she'll come back in a minute.  Owen immediately pressed the nurse call button and she came running in.  "Owen says.. see mom.. told ya she was pretty."  She was flattered and forgave him for pushing the nurse call button over and over again.

We finished up the IVIG around 11:30 and went to draw his post infusion labs and his IV wouldn't draw blood.  Ugh.  We decided to let the blood drip into the red topped tube but it didn't work, then we pulled the iv and blood was everywhere!  We got enough blood to fill up 15ccs of labs and we were outta there! 

We grabbed a little lunch with Daddy and now we are all snuggled up in bed trying to rest up a little.  There is never any rest in the hospital.. especially in the ICU setting. 

Glad we get a little break before the next infusion... I believe if his labs come back good, we can wait a month.  We go to Stanford again next week for clinic.  As of today.. Owen has been listed on the transplant list for FOUR WEEKS!!!  Time is flying by. 

IVIG Round 3!

We got a call around 2pm that Owen's room in the CVICU would be ready around 5pm! I picked up Kam and we headed to pick up Daddy at work.   Daddy was finishing up a few things so we decided to have an impromptu photo shoot outside of Daddy's work.  Look at these cute kiddos. :) 

We got up to our room, which just happens to be the exact same room that Owen's buddy checked out of earlier in the day following his IVIG treatment.  We got settled in, never saw our nurse, but had some other "helping out" nurses.  Owen has been so thrilled to be here!!  We got a fun Mended Hearts of Phoenix goodie bag thanks to Vanessa and child life found Owen a super cool bionicle Ironman.  I spent forever trying to build him, just to have his toy snake destroy him within seconds.

Owen always strips down to his pullup the minute we arrive.  He loves to be naked lately!?  These were his vitals just a second before the IV team paid us a visit.  HR {green}, SATS {blue} and yes, they are 50%.  I increased his oxygen to 3 liters and his sats are better. 

The IV team got his IV in with one poke about 7:30... and we are starting his IVIG now at 8pm.  It's a record!!!  The intensivist on call tonight is on her A game and we are so much more comfortable in the Cardiac ICU! 

Owen continues to be so happy.  He's eating top ramen noodles, broccoli, carrots, milk and pizza dipped in ranch right now. :)  We are going to call it an early night and his night nurse is really great so far!  Deep sigh of relief.  Prayers that things continue to go smoothly and we will get out of here at a decent hour tomorrow morning! :) 

Random Tuesday

I am so shocked at how quickly time has been flying by.  I can't believe it's already Tuesday and Owen has round 3 of IVIG tomorrow!  He is completely annoyed and doesn't want to go.  I have to buy him a toy or something special each time we go to the hospital because I feel so darn bad that he has to go through so much and I feel helpless.  Today he picked out a little Bain villain toy from Batman and is as happy as can be!!

This weekend was amazing and I am so bummed I didn't take a single picture.  On Saturday night, I spent time with my friends and fellow heart moms.  We went to the new Postinos in Gilbert and it did not disappoint!    We closed the place down at midnight and continued to chat until 12:30.  When I got home, Kam just happened to be awake, I'm pretty sure she waited up for her mom.  She is such a sweet girl.  Owen scolded me first thing in the morning "Mom.. you really shouldn't stay out past your bedtime."

Sunday, we went to Daddy's baseball game in Tempe.  He plays on a baseball league with his coworkers and it was fun to just sit outside and enjoy their game.  Daddy rocked it on the field and we were so proud.  Well... Kam listened to her iPod and Owen played iPad the entire time, but at least they soaked up some fresh air.

Carson's mom and Sister are in town this week, so it was great to see them yesterday and we can't wait to hang out with them this week!

This brings us to Tuesday.  I spent the day scrubbing my house.  I always go into nesting mode before a hospitalization or trip.  Since Owen has at least a 24 hour stay at the hospital tomorrow, I cleaned all day. 

Oh.. and I finally got my social media buttons posted on the left sidebar.  I have all sorts of navigation buttons ready, but I have to finish the pages that they link to first.  I don't want to have dead links or ones that say "under construction". 

Tonight, after dropping the girls off at dance, I am going to a craft night with the amazing bloggers at Lollyjane.com.  I am looking forward to getting my craft on and zoning out for an hour with paint and some vinyl.  I'll post pictures tomorrow and will have plenty to update the rest of the week.

Random Tuesday post.

DiamondBacks Game

We spent our Friday evening at Chase Field.. home of the Dbacks!

Kamryn and Gigi were dancing as post game entertainment!  We quickly found our seats in the handicapped area above 3rd base and settled in to watch the Giants slaughter the Dbacks. 

As usual, we ate some super delicious ballpark dogs and Kam got her traditional ColdStone Ice Cream.  The first six innings flew by and Kam had to get all changed up in her costume.

Owen was totally zoned in on the game.  He loves all sports so much and was really into the game!  He had his cheeks stuffed with peanuts the entire game as well.  He loves to suck on the peanut shell and then crack them open and eat the nuts. 

Owen wanted to see the 'pretty girls' all dressed up and ready to perform.  We saw Liv and LuLu on the concourse where we took pictures of all the dancers before they went downstairs to perform.

Kam and Gi look as cute as ever.  Our dance studio does the same performing costume two years in a row which I love, because we have to pay for competition costumes for the girls as well.. and then recital costumes after that!  Thanks Nana! :)  The girls were already tired as it was close to 10pm and they still had about 40 minutes before the game ended.  {This isn't my favorite picture, but it was the only one with the two of them.. all my other pictures have other dancers and I don't want to post their kid's pictures.}

The girls performed when the game ended and can I just say, those last two inning were so ridiculously long!!  The girls did a great job performing and then made it out just in time for the fireworks.

Owen went nuts for the fireworks and I was just waiting for both kids to crash!  We found my Dad and Gi, but missed the rest of my family. :(  It stinks sitting in the handicapped sections because my parents, Uncle, Sis, Cousins and Luke's adoptive Fam were all sitting in the 2nd level.  So we didn't get to enjoy the game with our entire family.. it was a little bit of a bummer.  We had a good time regardless.

We made it out of the parking garage at 11:30 and were home in bed by midnight.  It was such a fun night!!  Good Job Kam on another great peformance.  I can't wait to watch you compete and perform all year!!! 

GREAT Antibody News!!!

I have good news and I have great news to share.

Our week has been so great.  Very little TV watching has been replaced with plenty of time outdoors.  It has been wonderful.  Each night when Daddy gets home from work we have family dinner and then we have been off to the park, the pool, or just chillin in the hot tub.  I will give a big shout out to my husband for this one because he is getting me out of my stress bubble.  The last couple of months have been so full of stress and mixed emotions.. it's nice to just feel like I broke free of it. 

Kam and Gigi are dancing at the Dbacks game tonight and are so excited!  It's a big game tonight, Chase field will have the roof open and the fireworks are just icing on the cake.  We are going to have a great time!   This little video is Owen singing the Ball Game song.  You can hear how winded he gets after just a few words :(
 

Now for the GREAT news!!  You ready for this?  I got a call from Stanford yesterday and they had discussed Owen's antibody results from his first two IVIG treatments.  Before his first treatment, his PRA Class I antibodies were at 29% and his Class II were 98%.  After his first treatment, the antibodies dropped slightly.  His second treatment on the 5th started with his Class I antibodies at 27% and his Class II at 80%.  After that second treatment on the 6th, we drew more labs and his antibodies came back at ZERO!!!!  His Class I and Class II are ZERO!!!  I call that answered prayers. 

 

What does that even mean?

 

Right now, Owen has been listed for a heart for three weeks now.  He is blood type B+ as in "BE POSITIVE" and with those pesky antibodies, we had to place voids on the donor heart we can accept.  If the donor heart had any of those antigens that Owen has built up antibodies against, we can not accept the heart. 

 

With Owen's antibodies at ZERO, he can accept ANY heart with his blood type and size.  That is a huge, huge deal!   I am so thrilled! 

 

Owen's team at LPCH are being cautiously optimistic, which I fully support, and they are keeping the voids on his listing with UNOS for the time being.  His next round of IVIG is scheduled for the 19th and we will draw labs pre and post treatment.  If those both come back as 0, then we will remove those voids from the listing.  If Owen were very sick in the hospital and may not make it another day, they would approach things differently and remove those voids today.  Thankfully, we are in a good place and have time on our hands.

 

Thank you for all your prayers and support.  We are so blessed and not a day goes by that I don't realize how fragile and precious life is. 

Happy Tuesday.

Today is the anniversary of 9/11 and I will never forget that day. Kam was about 20 months, Auntie Booj was living with us, I went to the gym, Daddy came home from college to tell us what happened, it was all unreal and unbelievable. It still is.

I am still working on the blog.  There have been a million interruptions during the day now that Owen is going potty.  He is nervous to get on the big toilet by himself and turn around so every single time, I have to go in and help him.  I honestly don't mind because anything is better than changing diapers all day, but it certainly is time consuming. 

As if potty training weren't enough of a change.. Owen decided that he would forgo bath time and he prefers showers now.  It's so easy to just turn on the water and put him in.  He takes a quick shower... in and out. 

This is Owen's goofball picture of the day.  He's has me laughing all day long!

Kam is dancing at a Dbacks game this weekend.  All the cousins are going and are so excited for the fireworks after the game.  So I guess it's not so bad that we missed out on the 4th of July firework. 

Daddy started his baseball league and has been going for daily walks.. he's already losing weight like crazy.  I'm  so proud of him!  Time for me to jump on the bandwagon.  I've been in a stressed out, eating sporadically, feeling crummy, kinda mood the last few months.  I just need to whip myself into shape and take control of me. 

Today is a rainy day in the desert.  The cooler temps are amazing and we are getting a little teaser of fall weather. 

Happy Tuesday.

Under Construction

I am making some cosmetic changes to the blog today and tomorrow.  I will be adding buttons, deleting things and hopefully get it where I like it.  I will keep all my links to other blogs on here and adding a few more.  I am going to add some navigation buttons and things, may even change to a two column layout.  I am good with HTML, but not good with blogger restrictions, so bear with me.  Thanks! :)

Potty Trained "All On MY Own"

We woke up to thunderstorms in the desert today and it is wonderful!! We drove Sis to school, Daddy to work and are enjoying our day relaxing at home. Owen continues to be a rock star and has fully potty trained himself between Tuesday and today.  Even with a 24 hour hospitalization, he picked right up where he left off.

  I would say that no one could be prouder than I am, but he is pretty darn proud of himself!! He is constantly saying.. "I am so good at this! I am actually going potty! Wow.. I am so excited because I am doing it!"

There has been no prompting, "training" or anything on my part recently because he just wasn't willing. He is so stubborn, so I choose to pick my battles. Potty training just happened to be on the bottom of the list as of lately. I was so shocked when he just decided to go and thought it was going to be a one time deal. He proved me wrong and now we have a potty trained little guy. Couldn't have been any easier.

Way to go Owen!!!
---------------------------------------------
On another note... I did speak with cardio, the charge nurse, and a patient advocate at the hospital before we were discharged.  They listened.  I think we are going to get off on the right foot next time.  I also have a number directly to our local transplant team and they have been in close contact since discharge. :)   I feel a little better about things moving forward.

Home and Potty Trained

We are home!!  It was a long stay at the hospital, but we finally made it home by 4pm.  Owen hasn't had too many reactions, other than puking.  He is happy to be home and playing with his toys.

On Tuesday, Owen decided that he was done with pull ups and decided to potty train himself.  He just went to the potty all day without prompting.  At the hospital yesterday, he went in his pull up, only because it is so difficult to unplug him from all his leads, pulse ox, blood pressure and IV, just to go to the restroom.  As soon as we left the hospital, he picked up where he left off on Tuesday.  YAY Owen!!  I'm so excited he just decided to go on his own.  I realize there is a huge chance he may regress, or he may do fantastic, but we'll just take it day to day.

For now, I am just cleaning up puke.  Cuddling in bed and watching Megamind with Owen.  Daddy and Grandpa are taking the girls to/home from dance tonight so I can rest up.  I'm sure I'll have more to post tomorrow.  Now it's time to catch up on sleep.

IVIG Round 2 ... almost done.

Good morning from sunny AZ.

We had a decent night. We finally got Owen's IV placed at around 9pm after waiting six hours for the IV team. We started his infusions at around 10pm. Owen didn't have any reactions to the IVIG, aside from some puking. He woke up at 3am feeling like he just needed to have a chat. He talked to the nurse, talked my ear off and was full of energy. So we are exhausted this morning, but he is happy and that is what matters. Here is our morning view.

Aside from a few medical mishaps I caught, from missing medications to wrong IVIG dosage, things have been going okay. Owen had an echo this morning and the nurse just brought in his meds. "I don't give cardiac meds often" doesn't make me feel too confident.  Seriously.  Don't tell a parent that. 

We are waiting for Owen's IVIG to complete and then we are OUTTA here. Cardio just came by and Dr Jedeiken introduced himself.  Wishing we could win the lottery and just move to Palo Alto and be independently wealthy.  Time to go back to sleep. 

IVIG Round 2

This is a post where I vent.  Don't say I didn't warn you.

So we waited around all morning waiting for the call to come into the CVICU to start Owen's second round of IVIg.  I never heard anything and around noon, I called the hospital hoping to find a window of time for admitting.  They said that they had plenty of room in the CVICU, but they were short staffed nurses, so they would call before 2 and let me know. 

Two o'clock came and went, and about a half hour later I got a call that there was no way to get him into the CVICU, but that there is room in the peds ICU (trauma, respiratory).  So we arrive at 3pm.  At 4pm, we finally get admitted and up to our room.

Turns out we are in the peds ICU overflow unit.  It's like a deserted world over here.. no doctors... no intensivists.  Just a couple nurses on this entire side.  Really?  Not the type of care that I was envisioning for a heart failure patient. 

The peds ICU attending just came by and was very sweet and took all his information.  There were a couple nurses in here and also the intensivist.  I asked them all how often they see cardiac patients getting IVIg infusions and they said, rarely do we see cardiac patients at all as they are on the cardiac floor.  Awesome.

For the past three weeks, I have been talking with the cardiologists about my feelings of Owen being placed on the cardiac floor for his infusions.  I have been reassured time and time again that ALL of the cardiac IVIg patients being placed on the sixth floor for infusions.  "They do it all the time" I have been told.  Maybe they do.  Maybe it's just the ICU overflow that doesn't seen IVIg patients, or cardiac patients.  My biggest frustration now is that I have been made to feel guilty for wanting Owen on the cardiac floor, as if I was overreacting.  I have been told those 25 beds are reserved for the "heart sick" time and time again.  In my opinion, Owen IS heart sick, or else he wouldn't be waiting for a heart transplant.  I hate that I have been made to feel guilty, that my concerns were invalid. 

Word of my frustrations has gotten around and Dr Z just came by.  She is a peds ICU intensivist that remembered Owen from his first two surgeries.  I just unloaded on her and she listened. It felt good, I'm not going to lie.  Still no cardiologists around, but she made them aware we were here.  I'm sure we won't see them.  Another sign that they just don't take an interest in Owen here.

 I feel like Dr Stock dropped Owen off on the transplant team, but that they haven't taken an interest in his care because Stanford is calling the shots.  I guess I feel like no one locally has our back right now.  It's not a very comforting place to be. 

We are still sitting in Owen's room, waiting for the IV team to come around and place his IV.  The pharmacy hasn't brought up his IVIg, nor his medicines, so we wait.  Three hours and counting. 

Owen is loving all the attention.. many of his old nurses have come by to say hi.  He is not scared or anxious and is having a great time watching cable and playing iPad.  That makes this whole experience a little easier.  Owen is settled in eating his dinner and happy to still be IV free.

Pray for my sanity tonight.. Mama bear is frustrated.

Waiting...

............................................................ .........................

Today we go back to the hospital for Owen's second round of IVIg.  It's hard to believe that two weeks have past.  Owen remembers every little detail of his last stay and he is less than interested to go today.  Yesterday he told me .. "I don't want any IVs anywhere on my body."  So I asked him how we will get the immunoglobulin into his blood and he says "well.. we can just get a chainsaw and saw into my arm and then put it in!"  Apparently a chainsaw seems less stressful than an IV. 

We are just getting a few things done around the house this morning while we wait for the CVICU to call with bed availability.  We are planning another overnight and packed our bags.  I promised Owen a new Spiderman toy at Walmart on our way.  I just hate this all for him.  He knows that he needs these infusions and what they do.

I told him that the IVIg is full of good antibodies and his blood has some bad antibodies.  When we put the good antibodies in, they go through his blood and find the bad antibodies and kick their butt!  He knows those bad antibodies can gang up and attack his heart, so he needs the good antibodies to defend his new heart.  Then, in the end, he will have a superhero heart and have the energy of a superhero.  Superheros also don't require oxygen. :)  He is so tickled to get a heart now!! 

I'll post more tonight after we get settled in our room and the infusion started.  We are going to try a different type of pre med since he had an icky reaction to the iv benedryl last time. 

Not looking forward to today, but we will make the most of it!

And here's a little look at Owen and his best buddy while having a play date this week. They played Super Smash Bros for at least an hour.  Zero communicating, other than "I gottcha!"  They were just as happy as could be!!

Gymbtastics!!!

It has been a while since I did an update on Owen's physical therapy at gymnastics.  He has come so far in the past year and he loves to go to his "gymbtastics!!"  He asks all week when it's time to go and works so hard while we are there.  Even when he feels exhausted and weak, he will still ask to go.  Some days he takes a million breaks and is totally winded, other times he pushes through.  I am so thrilled that he loves it so much.

He was having a great day, so I thought I would take some pictures and post his progress.  Owen always decides what he wants to do at the gym.  Hands down, he always picks the obstacle course and you will see why in a second.  Today, he decided he would start with the rings.  He couldn't pull up until recently and now he uses his upper body to lift him off the ground and hold on.  He requires a lot of lower body support, but his little arms are doing all the work.

After five pull ups, we moved on to the obstacle course.  Owen did the hula hoops first, and he can only put one foot in each hula hoop.  It seems like such a simple task, but was hilarious when he would accidentally step with two feet and say "darn it.. I am going to have to start over!" 

This is a little out of order, but he loves jumping over the barrel mats.  He always face plants it on the other side and laughs hysterically!

The balance beam is his least favorite activity, but he has mastered the toddler one here.

Next he climbed through the tunnel which he really dislikes because "I bonk my head on it all the time!" 

He doesn't like these more off-the-ground balance beams, but he will do it if he can have "two hands" to hold onto for support.  He can totally do it without help, but he likes the security.  So we usually get him started with two hands, move to one hand and let go half way through.

Owen's newest favorite activity is the barrel roll.  I am so grossed out when I think of the million germs from all the kids that play in it, but he just loves it so much.  He climbs in the barrel and we roll him all over the gym.  His laughter makes it so worth it!  Then he turns blue and we take a break.

Owen loves to play kick ball across the tumble track trampoline.  The boy has a power kick, but we need to work on those graceful arms. 

Owen loves the big yellow trampolines too. We have been working on learning to jump.  He will bend his knees and jump on his own, but can't quite get his feet off the mat.  He is getting stronger and most importantly, he is trying so hard!!

Here is a video of Owen's mad jumping skills!!
 

We always end our PT sessions with Owen's favorite part.. having his PT do the work and bounce him on the trampoline "SUPER HIGH!!"  He always gets to excited and can't wait until his next session.

Owen starts another round of IVIg on Wednesday, pending bed availability.  We are having a relaxing Labor Day weekend, and are choosing to do as little labor as possible.

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