Second Opinion from Boston Children's

I received a phone call at around 5:30 this evening from the amazing Dr Marx at Boston Children's.  I just have to begin with saying that he is one of the most kind hearted, humble, caring doctors I have ever had the pleasure of speaking with.  One of a kind. 

About six weeks ago, I contacted Dr Marx via email.  I gave him the run down on Owen's cardiac history and asked him if he would review Owen's case for a second opinion.  The entire team at Boston Children's comes highly recommended as they are the top cardiac center in the nation.  He immediately replied to my email and asked me to send him some medical documents. 

I sent his most recent cath report, echo, ekg, labs and clinical notes from Stanford.  He called me on Sunday, the 5th of the month and let me know that he had a chance to fully review everything and was just going to speak with Dr Del Nido, their head cardiothorasic surgeon, before giving me his opinion. 

I have been anxious to get this call.   As we prepared to list Owen for transplant over the past weeks, I have been so stressed.  The thought of moving forward with transplant has had me a ball of nerves.  I just wanted confirmation that we are making the right decision and have exhausted all other surgical options for his heart. 

I received that confirmation today.

Dr Marx and Dr Del Nido had the chance to review Owen's records last week, and again last night.  They took their time on his case and wanted to make sure there was nothing they were missing.  I will do my best to explain here. 

Here is a picture of Owen's current heart anatomy.  The blue part is his Right Atrium, Tricuspid Valve and Right Ventricle.  The red part is his non existent Left Ventricle.

Owen's Tricuspid Valve has always been severely leaking.  It backs up into his Right Atrium and that is why his heart is so dialated and enlarged.  We have tried on several occasions to repair the leaky valve, but it always reverts back to severe regurgitation.  The last valve repair was done by Dr Hanley at Stanford in Feb 2011 and he is one of the best surgeons.  His tricuspid valve has remained at a moderate regurge, but also has a mild/mod stenosis due to the scar tissue on the valve leaflets.  It is only going to get worse with time. 

I was hoping that Dr Del Nido could repair the valve in some way, but here is how Dr Marx explained it.  Owen's right ventricle (which is the single ventricle that he has) has a moderate dysfunction.  It doesn't squeeze and relax fully.  If we fix his valve and get it working perfectly, which is not probable, then it will still continue to leak over time because his right ventricle function is not working perfectly.  So the valve is leaking because of the moderately depressed function.  So, this rules out a valve repair because you can't fix one issue and not the other.

Currently, the only way to improve the ventricle function on a single ventricle patient is by medicine therapy.  Dr Marx agreed that Owen is on the highest doses possible of every medicine out there.  There is nothing we could change to improve his function. 

Dr Marx continued on to give me a possible surgical option because that is was the team at Boston does.. they try to find a way to give hope.  There is a surgical procedure that can be done where Dr Del Nido can band (almost with a rubberband) off his right ventricle to decrease the dilatation of the ventricle.  Then he can go in and attempt to repair the valve further.  The risk?  They have only done this one time on one patient.  There is no research, data, or success rates to go off of.  The infant that had this procedure done is doing great, but that doesn't mean that Owen will do well with it. 

Another issue was that there is no guarantee that even with this surgery, that Owen would ever be a candidate for the Fontan in the future.

The next issue with this surgical option is that if surgery doesn't work out in his favor, we are out of options.  He could possibly end up on ECMO and that is extremely dangerous for Glenn anatomy patients.  The candidacy for transplant could also be eliminated.  It's a big risk.  Dr Marx said it is something that we should only consider if we are thinking "we will do anything to avoid transplant."

I went on to ask him his honest opinion if we are making the right choice to move on with transplant.  Of course, doctors like to give different options to parents and leave the difficult choice up to us.  He couldn't tell me either way what he would choose because both options come with high risk. 

We talked about Owen's current status on the transplant list.  He was very impressed that we are able to wait in Phoenix for a heart at Stanford.  I felt like he genuinely cares about Owen's well being. My biggest concern being long term outcomes and quality of life.  He was completely honest with me and said "I do not envy your decision, it is difficult." 

Difficult indeed. 

Dr Marx ended the conversation asking that I please keep in touch and send him emails on how Owen is doing.  Both he and Dr Del Nido took an interest in Owen's case and I know they both put a lot of thought into what is best for him. 

I am going to take some time to pray about things.  I plan on talking to Dr Rosenthal, our cardio at Stanford.  Right now, I feel like I got the confirmation I so desperately was searching for.  I feel like we are going down the right path for Owen. 

From the very beginning, in September 2007, when we found out at our ultrasound about Owen's heart, I have followed my heart.  We had a couple surgeries at PCH, moved onto UCLA and CHLA for second and third opinions.  Moved on from UCLA to Stanford.  Now to Boston for their opinion.  I have prayed.  I have followed those answered prayers and we have had quite the journey.  I never would have imagined in that ultrasound room 5 years ago, where we would be today!  I am so grateful for the amazing boy we have, the woman I have become, the support my husband has provided and the sacrifices that Kamryn has made.

I know we are moving in the right direction. We just pray that a heart comes before his tired heart wears out.  I forget how sick he is on a daily basis.  When talking to Dr Marx tonight, he really laid it out there and my heart just broke.  Leaky valves, poor function, lack of oxygen, trouble eating, easily winded... I forget that my fun spirited boy is so sick.

Please continue to pray for Owen in the upcoming months as we wait for a call. 

Moody Boy

This pretty much sums up how Owen is feeling this morning. He even had me cancel a play date with one of his favorite friends.  Now he's hanging upside down on the couch, but he is just feeling lazy.  A little emotional and moody to boot.

Yesterday, we took Kam for her follow up with the Ortho.  Her ankle xray shows the fracture has fully healed!!  No more air cast and she is back on her feet.  While we were in the office waiting, the xray nurse came in to grab Kam and she was a cute little blond.  Owen says "oooooo.. she IS Pre-TY!"  She said he was a charmer and he of course responded with "yep. I am" 

An hour later, we ran to Walmart and he was so upset I wouldn't let him buy a new Spiderman.  Oh my goodness.  He just yelled "I hate everybody in the land" until we left, which was pretty quick.  As soon as we got to the car he apologized and said "I sometimes get frustrated."  His emotions are all over the place, but I made sure to make it a teaching moment because that was totally unacceptable behavior. 

Most of the time he is a sweet little guy who loves cuddles, learning, playing and having long conversations about really important Superhero stuff.  Love this boy.. even with all his mood swings.

Happy Monday

Our weekend came and went so fast.  We had to pass on a few fun events, but Owen was just not feeling it.  He has had a few low grade fevers, vomiting, and that darn weakness in his legs.  I spoke with our NP at LPCH today and isn't sure what is causing the leg pain, but all the other symptoms are IVIg side effects, which could be much worse. 

I reserved Owen's portable oxygen concentrator for our trip back to Stanford next month and figured out the last minute details with the air ambulance team.  I have been feeling so emotionally drained this weekend.  I'm not sleepy tired, but drained.  I sat on the kitchen floor today scrubbing the grout with bleach, baking soda and a toothbrush.  I just zoned out while Owen rested on the couch and it felt good.  I am trying to stay optimistic and prayerful.  I know we are pursuing the right avenue for Owen to have the best quality of life, but I am struggling.  I hate that another family with be grieving, while we are celebrating life.  It's hard to explain the emotions involved.

Owen's little flush cheeks...

Kamryn has been drawing constantly.  You know between her homework, violin practice, 7 hours of dance each week, reading and school... she draws.  It's no wonder I can't assign her household chores, she has so much going on to stay busy.  This was what she "doodled" last night.  She is really interested in drawing Manga right now and I think it's because there are so many stories and emotions in each character.

She showed me this one last night and I said.. Are you sad?  She laughs at me and says "no..not at all!  Manga characters aren't all smiles!"  Who knew?

Owen loves when Sis gets home from school!!  Monday is her down day from dance so we snuggle up, watch tv, and have fun with her.  Tomorrow is the followup with the ortho to ensure her ankle fracture has healed.. then she can dance on her foot again.  She will be so thrilled!  She hasn't missed out on PE much.. they have been doing square dancing and the "chicken dance" in PE for their dance unit and she gets to do sit ups and laugh at everyone.  :)

Happy Monday.

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Shin Pain??

It appears that we have escaped most of the negative side effects associated with IVIG treatments.  Owen had a few vomiting episodes, last night and today.  At around 5am, Owen spiked a fever.  Of course I couldn't find a single thermometer, so Daddy had to run to Walmart so I could get an accurate temp.  He was running right around 100 degrees, so I gave him a little Tylenol and he has been fine since. 

Owen has had a ton of energy and has been talking like crazy the last 36 hours.  I keep asking him if he has a headache and he reassures me with "nope."  I think I can handle these treatments if we are only dealing with puke. 

On another topic..

Owen has been complaining of leg pains the last few weeks.  I know this isn't associated with the IVIG at all.  He will stand up to walk and go right back down to his bum and tell me his shins hurts.  Then he will go hours without walking at all.  Some days he is fine, but it has been a consistent issue.  Any idea what would cause the shin bones to ache?  I know there are growing pains, but I don't remember Kamryn getting those in her shins.  Maybe she did and just didn't mention it because her legs were a lot stronger than Owens are.  He has very low muscle tone in his legs since he was such a late walker at 3 yrs.  I mentioned it to his Physical Therapist, but she has yet to see it and said we would keep an eye out for it. 

What do you think it might be??  Do your healthy kids experience this? 

Thanks so much and I hope you are all enjoying your weekend!!

Home.

After 21 hours in the hospital, we are home!  We drew all his blood pre and post IVIG to send to Stanford's antibody lab.  I dropped the specimen off at FedEx on our way home from the hospital.  We should know next week if the IVIG has helped at all.  I will call to schedule his next treatment in two weeks.

Aside from the IV Benedryl, Owen had no side effects to the IVIG.  He is tired, which is to be expected, but nothing else negative.  Right now he is a little bit flush, so I am hoping a fever isn't rearing it's ugly head anytime soon.  I'm pumping fluids and am getting ready to put him down for a nap soon. 

It's always a reality check to walk the halls of the CVICU.  Not only are we grateful for how far we have come, but there is a scary future ahead. 

I have a bunch of phone calls to make, picking up Kam, and tonight is a mandatory meeting at the dance studio.  It's always an adjustment to go to something like a "hair and make up meeting" to talk about how poufy to make their hair for competition, when I just left the ICU where so many little ones are fighting to survive.  It certainly puts things into perspective for me.

We have a busy weekend and I am hoping to get a good night sleep tonight.  I can't believe my son is listed for a heart.. is it really happening??  I guess it just hasn't sunk in yet.

Have a great weekend!

Officially Listed for a Heart!!!

I don't even know where to begin as it has been an exhausting day.

First of all.. Owen is OFFICIALLY LISTED FOR A HEART!!!

I got a call around 4pm from Stanford letting me know that they have the air transport ready and they have him listed as a status 2!  I have many mixed emotions knowing that a heart offer can come at anytime and he will be on a plane, headed to the OR and given a new heart.  It seems so surreal.

Ok.. now onto today. We received a call around 1pm that a bed would be available for Owen in the CVICU at 2. We headed over to Phoenix Childrens and got through the admitting paperwork.  Owen was given one of our long time favorite nurses all to himself.  She was on top of things, efficient and he had a great time getting hooked up to all his leads.

The nurse tried her best to place an IV and she first used the J-tip which shoots Lidocane into your skin to numb it before sticking him.  It was too much pressure and his vein collapsed and that was our first IV attempt.  Bummer.  He was hysterical and sweaty, so we gave him an hour or so to recover.  During that hour, we placed the numbing cream on his arms and called the IV team to come down.

They placed the IV quickly, but then had to draw 20ccs of blood so they had to squeeze his arm forever to get enough blood out for the labs.  Longest 2 minutes of my life!!  Nothing, and I mean nothing, is worse than holding your child's down to a bed while someone is poking them and trying to tell them it's "almost over".  It never gets easier.

On the bright side.. we got a good IV in and just in time for his "Big fat juicy hamburger with fruit" to arrive.  Owen was so happy, talked to all his old nurses as they came to visit and we watched a movie.  An hour went by while we waited for the Benedryl and IVIG to come up from pharmacy.

Owen wanted me to take a picture of his IV to show everyone how horrible it is.  He doesn't sugarcoat it!  The nurse administered his dose of IV benedryl, which is just a pre med for IVIG.  Owen had a full on hallucination and was wigging out!  I have never seen him act that way and he couldn't focus on me, was irrational and so the nurse ran to give the ICU docs a heads up.  I just cuddled him in bed and sang familiar songs and eventually, after 30 minutes, he drifted off.  He hasn't had Benedryl, especially via IV, since he was an infant so I can't compare this reaction to anything.  Ugh.  I'm just glad we were in the CVICU where he was being closely monitored. 

We ran a slow saline flush over an hour to clear out his IV before administering the IVIG.  I want to make sure we know if he has any side effects, if it's the IVIG or the Benadryl.  Geez. 

Owen's nurse also showed me his chest xray from today.  Look at how crazy enlarged his heart is!  That is just a single ventricle and it takes up his whole chest cavity.  The cool part is his coils.  Owen has had many collaterals that form which is basically the body's way of rerouting blood flow to the body.  Do you see the giant one off to the rigt that has a million coils in it?  I found that interesting.  You can also see his sternum wires down the front of his chest.

So it's 8:50pm and we have about 11 1/2 hours of IVIG left to go.  This was a first time run so we are hoping for no nasty side effects.  We will be back in two weeks for more which we are both already dreading.  So far his nurses and the docs in the ICU have been really great!! 

I'm off to catch some shut eye.  Owen's blood pressure cuff goes off every 20 minutes, his IVIG beeps every 30 and the nurse has to use a flashlight to check his IV site and eyes (for puffiness) every 30.  This is going to be a long night.

Working out the Details

There were no beds available in the CVICU yesterday.  This morning we are waiting for a phone call that something has opened up.  It also breaks my heart to know that all those rooms are filled with heart sick babes.  We are not in a rush, but will hopefully get in today to get his first infusion done.

I have received a couple calls from air ambulance agencies and we have had to arrange details.  It's feeling so real and it's freaking me out!  Each air ambulance has a different protocol and procedures for when/where to call and where to meet when a donor heart becomes available.  Only one of us can go with Owen on air transport and I laughed so hard when she asked my weight for flight.   I don't know why it was funny.. I guess I'd better lay off the sweets. :) 

That's all I have for now.  I will be updating from the hospital for sure.  I'm hoping things go smoothly, but I am not betting on it.

Air Transport Approval!!!

Owen is SO excited to go to the hospital today!  I just received a call from cardio and the bed situation in the CVICU isn't looking good.  They are slammed today.  They are trying to do some rearranging and so it will most likely be later in the afternoon, or even tomorrow morning.  Owen has been talking all about how fun it will be to play games, watch movies and he's "not scared of the IV". 

Last night he told me.. "Mom, I really want a pretty nurse.  One with green eyes and brown hair."  Where he comes up with this stuff is beyond me.  I'm just glad he's looking forward to his long days in the hospital for these very necessary infusions.

We also got APPROVAL!!! today from Owen's secondary insurance to cover air ambulance!!  This is huge and exciting because it means we can wait in Phoenix, at home, for Owen's heart.  If everything goes smoothly, and Owen doesn't take a turn for the worse, we could get a heart offer while waiting at home.  I hope that everything goes seamlessly with this process because it will open up a whole world of options for other families.  We have known so many heart families that relocate far away from home and wait for years for a new heart.  I cannot imagine, but would drop everything and do the same thing if we had to.  This approval is the biggest blessing!!! 

I haven't gotten confirmation from Stanford yet, but I assume he will be bumped up to status 2 as of today sometime.  They already have him listed with UNOS as a status 7, or inactive status (hold), until they got this approval. 

Things are falling into place as they always do for us.  I am anxious to get things rolling, but scared out of my mind.  Please say a prayer for Owen that he has no negative side effects from the IVIG infusions he will receive every 2 weeks.  The biggest side effects are migraines and vomiting. 

Thank you for all your support through this!

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Going Places

I love that I still get to hear every detail from this little girl's day even though she's in Jr High.  She is loving all of her classes and her teachers seem great!  She's ready to walk out the door 20 minutes before we have to leave and she's home doing her homework the minute we get home.  Seriously.. how did we get so lucky!?    I was helping her study for a social studies quiz and she knew everything in her notes exactly as they were written, as if she memorized the entire notebook.  Photographic memory perhaps?  We couldn't have asked for a more understanding, mature, sweet- hearted girl.

I love to hear how quickly she is forming new friendships.  It is hard to start fresh at a new school where you don't know a soul, aside from your cousin.  I can already tell that her new group of friends share the same great values and morals that we instilled in her.

We are so blessed to call Kamryn ours.  Not a single day goes by where I worry about what path in life she may take.  She is already planning out which colleges to attend and where she will do your volunteer work.  This little girl is going big places and I am so excited to experience this journey with her.

Love you Sis!!

It's a New Week.. Bring It On!

I have no pictures of our weekend fun because I have offically lost my mind!!  Really.  Lots of ugly crying, black mascara running, and feelings of having very little control over my life right now.  I know...  get over it Andrea.. just go with the flow.. everything will work out.   I just like to have a handle on things and right now SO much feels like it is out of my control. 

Today is a new week and I feel a little more reenergized.  I still have the 'sucker punch to the gut' stress that I just can't shake and I have a feeling it's not going anywhere soon.  I am just making the choice to put one foot in front of the other, one day at a time.

Saturday evening,  I took the kids to the orthodontists annual pool party at a local waterpark.  The kids had all the cotton candy, pizza and snow cones they could possibly desire.  Owen loved the giant bucket pouring water on him, the lazy river (of course) and playing with his cousins and Sis.  Owen's lips get so blueberry blue when we are in the water and we had more jokes made about him eating too many blue icees.  Ha.  No icees here.  Kam had fun with her cousins and I love that they are old enough to just do their own thing and check in every once in a while.

On Sunday, I went out for a much needed heart mom brunch.  It felt good to talk and get everything off my chest.  It's so nice to have friends that just understand exactly what we are going through.  I would be such a hot mess without their friendships!

I spent the rest of our Sunday snuggling my babe and our kiddos. Carson finally shook that nasty flu bug he was hanging on to all weekend.  We had to keep our distance but are glad Daddy is feeling better.

Kam is loving Jr High.  I think she's still getting into the swing things. Early morning wake ups are not getting any easier for any of us, but we haven't been late once so I say it's a success! 

It's a new week.  Bring it!!
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LONG Transplant Update and Another Tooth Gone!

My stress level is insane right now,  Between insurance, doctors, setting up infusions and getting this transplant approved, I think I'm losing my mind.  Deep breaths. 

I haven't heard from Boston yet, but I did call and leave a message for the cardio.  I'm sure they are just being thorough.  Or they are just busy being the best cardiac center in the nation.

In the meantime...

I got a call from LPCH and the heart transplant is approved through our primary insurance, which is great news!  The issue we have is with getting air transport covered from Phoenix.  The medical director (at the insurance company) denied it saying it was not necessary as getting to the donor hospital at time of transplant is not an emergent situation.  Really?  They continued on in their denial to say that it is in the patients best interest to wait at the RMH for the organ transplant because they are receiving desensitization treatments (or IVIG). 

This is totally a bad judgement call and I say bring it on!  Owen isn't even having his desensitization treatments done at LPCH, they are doing those at Phoenix Childrens.  Anyway.  I called to speak with the medical director today and apparently this person can't speak to patients.  Of course he cant.  I mentioned another heart mom that is in the exact same situation, going to the exact same hospital, for the exact same treatment, with the exact same insurance and they were approved by the medical director for air transport at time of transplant!  The response from the RN at the insurance was that the medical director doesn't make these decisions based on insurance coverage, but more on the best interest of the patient. 

Back at LPCH, the transplant coordinator is working with Owen's secondary insurance to get air transport approved.  If we get a denial, then we go back to the primary and I will fight with all my might to get this covered.  We could be waiting months, even years, for a heart as a status 2.  How is it in the child's best interest to be separated from his family, not receiving his early intervention therapies and living the only life he knows??  Insanity is what it is!  Sorry.. totally had to get that off my chest. 

We should have a final response on Tuesday regarding insurance coverage. 



We are also working on getting the IVIG treatments approved through insurance.  We would prefer to do these infusions at LPCH for many reasons, but since he needs them every two weeks, we can't afford that kind of travel back and forth.  So, we are settled in on doing them at Phoenix Children's.  I spoke with Owen's cardio on Monday regarding these infusions and we talked about the process involved. 

I received a call today that another nurse took over Owen's case and will be setting up all the treatments.  There is no short stay/infusion unit at Phoenix Children's so we will have to be admitted to the hospital.  The IVIG will run via IV for 12 hours and we will titrate up to his full dose.  These will be LONG days in the hospital and I am dreading them.  Owen had several IVIG treatments when he was 13 months old and there was so much wasted time in the hospital.  By the time you get admitted, hooked up to machines, the IV team gets things started and then Pharmacy has to deliver the Plasma.  Then it's 12 hours of infusions, then discharge.  Owen has no idea what's about to hit him, but we better get ready. 

We start IVIG on Wednesday! 

I got the call from the scheduler in cardio and she said we will get a call from 8am to 7pm on Wednesday.  That is the longest window and so I am just blocking out my whole day.  She originally mentioned we would be put in the "telemetry unit" which is the cardiac unit for sick kids.  I refused because we need to keep him healthy... which seems obvious. 

I just got off the phone with our NP at LPCH and she said they officially listed Owen as a status 7, which is inactive status until we get the final air transport approval.  Then we will bump him up the list to a Status 2 and things will be finally happening.  I am so nervous, scared and my anxiety is ridiculous. 

On a much lighter note and SO exciting.. Owen LOST ANOTHER TOOTH!!!! It was hanging by a thread for the past month and Daddy finally got it out!  Owen is so excited for the tooth fairy to show up tonight.  It's the little normal things that keep me going and staying positive. 

I'm sure I will have tons of news next week to update.  Here we go.  The next road in the CHD journey is about to begin!!! 

Happy Wednesday.

Happy Wednesday.

Kam has officially been off her crutches for two days and is doing well. She had a tough time at dance last night because she wanted to do her leaps and kicks but cannot put that much pressure on her ankle. A couple more weeks and she should be back in action.

I woke up this morning with my eye swollen shut. I ran to the doctor's office after dropping Kam off at school and they said it's definitely not infected and not pink eye. I have had a blind zit in my eyebrow for about week now, but haven't touched it, but was worried it spread like staph to my eye. Turns out it just needs time and I got a script for antibiotics in case it doesn't clear up.  It looks 100 times better already...

Immediately after the doctor, I had to run Owen to the dentist.  He had a routine cleaning a few months ago for his first {real} cleaning ever.  After cleaning one tooth, he had a full out panic attack and so we waited a bit and tried again today.  Daddy came along today and Owen was such a rock star!! He let them scrape the sugar bugs, polish and clean his pearly whites.  He has no cavities and his teeth look great.  His dentist said to bring him in monthly for a quick cleaning and check up so we can stay on top of his oral care prior to transplant.  I am so glad he loves his dentist!!



We stopped at the music store to pick up some violin supplies for Kam and took daddy to work.  Now it's time to whip this house into shape.  Hoping to hear back from Boston or LPCH by the end of the week. :)

Video: Owen Rocks 'Pump It!'

I still haven't heard back from Boston.. but I will soon.  I am so anxious to hear what they have to say.  Owen had a cardio appointment with Dr Stock today and we basically just talked for a long time.  Owen should be starting his IVIG treatments as soon as next week.  We are going to have some long days in ICU, but we will get through it. 

I have been in contact with LPCH and we are still working with the two insurance companies to get Owen's air ambulance covered.  There was also some appeals that needed to be done with the IVIG treatments.  The insurance wants us to do the infusions at Stanford because they are his treating facility, but traveling every 2 weeks is not cost effective, so we are hoping they will approve the infusions in Phoenix.  Hopefully they will have a solid answer by the end of today.  Really.. the Immunoglobulin is going to cost the same whether it is administered in Phoenix or Palo Alto.  The other hiccup we may come across is that PCH will only do infusions in an ICU setting, where LPCH will do it in a short stay outpatient unit.  So I understand where they feel it is more cost effective to do the infusions there.  We'll work it out either way.

Owen continues to do great.  He has been playing Just Dance with the girls and I had to get it on video.  Enjoy. 

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So Happy for the Weekend

This pretty much sums up our week!  We were so busy, crazy busy, and are so looking forward to the weekend.  Kamryn had a fantastic first week of Jr High.  She is making friends and getting into a routine.  She will be thrilled when she can finally ditch the crutches.  It's 115+ all week long and all of the buildings are accessed through outside entrances.  So the kids end up walking from building to building between classes in the heat and most of the cafeteria is outdoors as well.  It's a great setup for the winter months here, but these last few months of summer are killer. 

Our new back to school schedule that begins with a 6am wake up is getting easier each day. We were sleeping in until 9 towards the end of the summer, so we are sure missing those extra hours of sleep.

We helped my parents move this week into their new house, that happens to be in our neighborhood.  Gigi monster can ride her bike to our house we are so close.

We also broke down and purchased a new mattress for our room this week.  We have never purchased a bed in 13 years of marriage.  My parents gave us their old king mattress when we got married, as a hand me down, and it had reached it's breaking point. The new mattress is BLISS!!!  We have slept so good the last few nights!

  I never did hear back from Boston, so I'm a little anxious.  Maybe Sunday morning I'll get another call?! There really is no rush, I'd rather they spend their time and be thorough with his medical records.  I did hear from Stanford again and we are just waiting to get denials/appeals from the insurance companies on all his transplant finances.  The biggest hurdle is and continues to be the air ambulance transport from Phoenix to LPCH when a heart becomes available.  I just have a good feeling that it will all work out, so I'm choosing not to stress it. 

Have a fabulous weekend. 

First Day of Jr High

Today was Kamryn's first day of Jr High.  She was excited to start fresh at a new school, but nervous about making friends.  Last night was 7th grade orientation and we had a simulated bell schedule and visited with each of her 7 teachers.  Kam is in mostly AP classes and the same group of kids seem to be in the same schedule rotation. 

This morning when she picked up a hard copy of her schedule, she noticed it had been changed.  She no longer has PE first hour, but 7th.  Math and PE were swapped out.  Just for fun when she looks back on this one day.. here is her schedule. 

AP Math, Social Studies, Orchestra, AP Language Arts, Lunch, AP Language, PE and AP Science.  She has one or two teachers that about put me to sleep in the fifteen minutes that we were in there, but they were balanced out by some really enthusiastic fun teachers too.  Kam gets along with everyone, so it will work out in her favor.

I love to look back on all her years in school and I post this every year.  It's fun to see how much she has grown and changed. 

Kindergarten

First

I searched and couldn't find a picture of her first day of 2nd grade. This was the next closest I could find. This was also just after we found out about Owen's heart.

Second

Third Fourth

Fifth

 Sixth

Seventh

Kam is going to have such a fun year!!  Owen and I missed her like crazy today.  Kam came home and told me every detail about her day and I loved it so much.  Each class was broken down and I even got details about making friends at lunch.  I'm excited to watch her grow and change this year.  Welcome to Jr High Sis!!

Fractured Ankle

I took Kam to our favorite Orthopedic surgeon, Dr Danny, today. He did an xray on Kam's right ankle that she injured a little over a week ago.

A little backstory.. she fell down the stairs, I took her to urgent care, they did an xray and said all is well. Put her in a aircast and gave her crutches and told us to followup with her doc.  Fast forward to today and she still can't walk on it without pain, so she continues to use crutches.

Back to today.  Dr Danny did an xray in his office and showed me the fracture on her growth plate.  It doesn't look like it will affect her growth at all, but she has to stay off of it.  No dance or PE for at least a month.  Major bummer.  Not a fun diagnosis for my over active girl.

She will stay on crutches at least another week and continue wearing the aircast.  In a week, we will try applying more pressure or walking on it and see if it hurts.  Followup in three weeks with another xray to see if everything is healed properly. 

That it.  She gets to start school on crutches.  So much for the cute little hobo tote bags she was going to sling over her shoulder with her matching fancy shoes.  She's stuck in her new Nike tennis shoes and a backpack.  We got notes to excuse her from PE, dance, and to give her enough time to get to her classes since she has 8 periods this year.

Ok.  We are off to back to school night!!!  Busy busy busy day getting ready for our new routine.

Reminder:  I have two review programs going right now!! 

Go HERE to tell me how you feel about getting older and you'll be entered to win one of three $500 SpaFinder Gift Cards.
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Monday FunDay

This is how our Monday morning has been.  We only have two days until Sis is back in school.  I'm excited for her, but Owen and I will be missing her so much.  This morning Lucy and Livvy came to play and Owen wanted nothing to do with them.  He just isn't mister social with kiddos his age.  He prefers the older crowd.  Preschool would have been so good for him and I am a little sad that it isn't an option so we can keep him healthy.  I did find a preschool articulation class with speech therapists that is one day a week for 45 minutes so I am looking into that further. 

I received a wake up call on Sunday from Dr M. at Boston Children's.  He was calling to let me know he had thoroughly reviewed Owen's medical records.  He refrained from giving me his opinion until he speaks with Del Nido regarding surgical options.  I should know their second opinion by the end of the week.  Eek.

I then received a call from Stanford this morning and they met at Transplant conference on Friday and approved him as a status 2 listing.  Now they need to get approval from the insurances, not only for transplant coverage, but transportation.  I spoke with the financial rep at Stanford and she said that 9 out of 10 times, the primary insurance will deny the transport for transplant, so they have to do appeals.  If that fails, then they need the hard denial before they can go to his secondary insurance and the process continues.  Hopefully, they can expedite things and we will have answers in the next week.  Huge prayers that we can find medical transport, because waiting in Phoenix for his heart would be a giant blessing.  Anything we can do to keep our family together and life as "normal" as possible while we wait is ideal.

Kam is still laid up with her ankle.  The swelling has gone down, but it's really bruised and she can't bear weight on it without feeling pain.  We have an appointment to get her in with our friend, and orthopedic, to get it looked at.  Hopefully it just needs more time to heal and she will just have to start Jr High on crutches.  It's a bummer either way.

I promised the kids I would take them to see Diary of a Wimpy Kid at the theatre this afternoon.  We have family driving in from Ohio and this week is about to get real busy! :)  Did I mention my parents and Gigi are moving into our neighborhood this week.  And we hopefully we can get back to dance, even if it's just to watch. 

Getting ready for school and Owen Unfiltered

>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>> Kam found this super cute shirt for Owen online and I had to buy it. It's no secret that Owen is lacking a filter when he speaks and I always tell him to think before speaking or he'll end up with soap in his mouth. I have never followed through because all it takes is a quick warning and he reverts back to his sweet talking.  My favorite lately is.."Mom.. you are growing bigger and tougher everyday!"  Translation:  I need to get my butt to the gym.  I really do need to write down the things he says more.. the good and the bad.  Each time he knows his speech therapist is coming he says "Oh no.. not today.. I don't want to say the K sound because I like how I say it!  Not today.  No way!  Call and cancel.  Tell her I'm sick or something."

I'm pretty certain he will out grow it by Kindergarten next year.  Or maybe not. :) 

Last week on NYMed, we were watching them do a full heart transplant.  They showed the harvesting of the heart, the transport to the donor hospital and they actually showed the heart being taken out of the recipient.  They showed them shocking the new heart with paddles and everything.  Owen was just totally thrilled to watch it, so we watched it again!  He asked a million questions abuot the process and wasn't scared a single bit.  He just was so curious about what to expect.  At the end, he said "Wow.. so they just take a heart out, put it on some ice and then put it in me and then I won't need my tubes anymore! That's cool."   I'm pretty sure he's wise beyond his years!!

Yesterday was Kam's open house at the Junior High.  We bought and engraved her PE locker, got her school schedule, ordered her yearbook, got her school ID and purchased her PE uniforms.  They are kinda cute! :)  She is a little bummed that PE is 1st period, but the bright side is that it's much cooler in the desert to do PE outside at 8am.  She doesn't know a single person in 7th grade at her new school and is a little anxious about making friends, but I know she'll be fine. 

I've said my fair share of prayers that she will feel confident and have a great Jr High experience this year.  I know it's a big year for her and life at home could get pretty crazy if Owen gets a heart offer.  She has all AP classes and orchestra is her elective this year.  She is going to have a blast!!  We have one last week together for summer break!!

We pretty much finished her school shopping.  She had her annual eye exam last week and her eyes are getting terrible, like mine and Carson's.  We ordered her new contacts and went to pick up her new glasses today for at home.  She's going to wear her contacts most the time, but glasses at home. So cute!

She got her braces tightened again today and they are coming together so quickly.  We are still waiting on two permanent teeth to come in so we can get her all pulled tight.   This morning I gave her a lesson in eyebrow plucking 101... and it looks great.  I told her I'd grab her some bronzer, lip gloss and a new natural eyeshadow pallette for next year and she's so excited.  It's so fun to have a girl at this age.

Still no word from Stanford or Boston, but I'll be sure to post as soon as I hear anything.