Wednesday, July 02, 2014

June 30 2014

 

I am writing this from Katy’s ICU room… back in the little window seat/bed.  I have been here many times in the last six years… I have slept if you can call it that listening to the beeps and the hums of the ICU.  The ICU is usually our stop gap before home or the floor.  We thankfully never spend much time within these walls because Katy is always too well to be in the ICU.

This time is different… so different.  There are new noises coming from the ECMO machine that is keeping her alive… she is not the easy patient for this nurse… there are two nurses bedside at all times.  There is no Frozen or Annie blaring from the TV… no crafting or card games.  No it is sterile, quiet and horrible… no one can believe that it is Katy Murphy the firecracker who was tooling around the ICU halls in her go cart just hours before she was in cardiac arrest.  No one finds it harder to believe than me.

How did this happen?! I keep asking… no one knows.

What happened?

Monday was a normal day… well normal as far as days in the hospital go.  Katy was in the ICU to try a big gun Beta Blocker in hopes of bringing down her heart rate… after 24 hours and reaching maximum dose and no improvement.  It was decided that she would go back to the cath lab on Tuesday and they would see about finding a hot spot and ablating it and hopefully that would do the trick and no pace maker would be needed.

Katy was having her typical hospital 7pm snooze and Mike and I both thought she would be down for the night since she had an early day.  Change of shift happened… Night nurse was preparing 8pm meds and Mike was headed across the street to pick us up some dinner. Katy woke up to take her meds… said she had a belly ache, I thought she may have to poop.  Was putting her crocs on when I noticed her face/lips looked very purple/gray… looked at her a second later and her eyes were rolling back in her head… I screamed for the nurse (who thankfully was bedside with us) she looked at Katy and went to push the code button… I ran to the hallway and screamed help…within 30 seconds 30 people were in Katy’s tiny bed space.  They bagged her and immediately started chest compressions… within 3 minutes the decision was made that she needed ECMO… the team worked flawlessly, nurses, doctors, everyone knew their role and did it effortlessly. 

I of course was losing my mind… and begging God and anyone who would listen to save my girl. An amazing fellow ICU parent who was walking down the hall at the time picked me up and held me and told me it would be OK.  He was so kind… I will never forget the kindness he showed me in that moment.  Then my poor husband could hear my screams from the hallway and knew it was Katy… I can’t imagine what was going through his head as he walked through those double doors… I do know that the strength and courage he showed while watching the team work on his baby girl was remarkable.  He watched the entire time as they performed CPR for what seemed like hours.  Holding me and giving me updates as he thought I could handle them.  Pointing out the good things… only stepping away once she was on ECMO to call my parents.

It is nothing short of a miracle that Katy is alive today.  One of the nurses who was performing CPR (there were two and they switched off) came to see us last night and he said that he felt it was divine intervention in that room that night because it was bad.  Her heart just completely stopped and her lungs filled with blood. 

Because of pressure in her lungs once she was on ECMO she had to go to the cath lab immediately to relieve the pressure in her heart.  They did this by making a hole between the ventricles. Now we wait… we are approaching the 48 hour mark and Katy is doing as well as anyone can hope on ECMO… There appears to be no damage to her other organs, her lungs which took the hardest hit are already showing improvement.  Her CT scan did show a small brain bleed… nothing concerning at this time and certainty not unexpected.

The plan as of now is to begin warming Katy up overnight… and lift her sedation just enough to ask her to squeeze our hand… and move her feet in the morning.  This will also give them the opportunity to assess her heart rate as she warms. If the heart rate rises as she warms they will still have to resolve this problem which means a trip to the cath lab for ablation. She would probably go to the cath lab while still on ECMO to put as less stress as possible on her healing heart and lungs.  This procedure could result in the need for a pacemaker. We will just have to wait and see one day at a time.

I just want to see her beautiful blue eyes…and eventually that gorgeous smile that can light up a room.  Everyone is hopeful that Katy will bounce back and make a full recovery… I am trying to latch on to the positive thoughts of those around me.  I know that my girl is a fighter and she has THE BEST team possible working together to get her back to her sweet & sassy self. 

Thank you for your calls, texts, emails etc.  I am sorry if I haven’t responded…it’s just been too hard. Please know that they mean the world to Mike and I and hopefully one day Katy when she is old enough and I can share with her how she has touched the hearts of so many. 

 

Wednesday, June 25, 2014

Ruling Things Out…

Yesterdays trip to the Cath lab gave us some answers. We learned that Katy’s Coronary arteries are good.  This is GREAT news…had they shown Coronary disease the answer would have been clear and we would be listing Katy for another heart transplant.

So after they checked her coronaries they went in search of another reason for her tachycardia (high heart rate). The EPS (cardiac electrophysiology study) which is the study of the electrical piece of the heart showed that Katy’s Sinus Node which is the hearts natural pace maker it is what controls the heart rate… is the source of the issue. 

We had hoped that there would be a “hot spot” in the heart that was causing the tachycardia, if that was the case they would have done an ablation to that spot and immediately fixing the fast heart rate. However, it was not the case and they looked high and low to find a spot other than the Sinus Node.

The current plan is to start Katy on a beta blocker to bring down her heart rate.  If that does not work they will go back in and ablate the Sinus Node… however that is not as easy as if it was a “hot spot” since there is a chance they could zap it too much and cause a too slow heart rate which would result in Katy needing to have a pace maker placed.  Basically it is a risky procedure which is why we hope we can treat with medication. 

It takes time to find the correct dosage of beta blockers and we are looking at at least another week inpatient if not longer. 

A day in the the life at Boston Children's Hospital:

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Lots of i-spy books and laps with daddy!

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Lots of visits to Au Bon Puke Pan

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Me… I’m still growing a baby… 23 weeks and getting bigger by the day  hour.2014-06-23 11.03.35

Perfecting our Uno Skills… Katy is a card shark!2014-06-23 18.48.02

Lots of time for mindless knitting2014-06-24 17.35.02

and naps

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Thanks for your love, prayers and kind words.  They mean the world to us.  Just another chapter in our journey.

This face is worth it all…

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Oh and bubba… he is having a blast! He spent most of the week with Justin, Tyna and all the boys and is now at Auntie Dars enjoying time with his cousins from Illinois…

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I miss him like crazy… but his smile makes my heart happy!

Saturday, June 21, 2014

Katy Girl Update

 

As most of you know Katy had her Cath on Thursday 6/19 and the results were pretty much what we expected… in that there was no real change.  The heart is still stiff the pressures are still way to high and her heart is working much to hard.  Her biopsy came back showing zero rejection and while normally I would be ecstatic with that I was really hoping that it would show rejection. Rejection, we can treat that and blame it for her high heart rate and stiff heart. The fact that the biopsy was clean means we need to run more tests and try to figure out if this heart is fixable or if we need to relist for transplant. 

Katy was started on Milrionone and Dopamine in the Cath lab and sent up to the Cardiac ICU with a central line placed in her neck.  ( needless to say she is uncomfortable and wants the line gone. however, it is the weekend and we are at the mercy of the PICC line team) Katy was given a blood transfusion and a few doses of IV Lasix… the plan for now is to dry her out and rest her heart (Milrionone) Early next week she will go back to the cath lab to check her coronary arteries and will also have a cardiac MRI unfortunately Katy is too sick to be under anesthesia for the length needed to perform both procedures so she will need to go under twice.

All of this information will be used to make an educated decision on the best move forward.  We have two options and it is a a 50/50  chance on which way this will go.

1. Is that the MRI shows that there is too much damage done to this heart from its repeated episodes of rejection and infection and it is unlikely it will recover and we need to relist.

2. The Cath shows that Katy has Transplant coronary artery disease (TCAD) and we will relist

or 3.

Everything looks OK…meaning the MRI shows minimal damage to the heart and Katy does not have TCAD and in that case we wait and see and give this precious heart more time to heal. Which more than likely means long term Milrione.

None of the options are ideal… obviously given the three choices I am hoping and praying for #3.

Tuesday, June 17, 2014

I Hope You Dance

 

Three years ago I was frantically calling local dance studios in March looking to find a studio that would allow Katy to join this late in the year.  I needed her to experience dance… Katy was newly listed for transplant and I had this bucket list of things I needed her to experience… or more likely I needed to experience.  I didn’t know what the future held… I just knew we had today.  The first studio I called basically laughed at me… they didn’t understand the need for the experience I didn’t care if she was in the recital… I just wanted to see my baby girl in a tutu. I called another studio…and it was just the studio for us.

I called Catch the Funk and was lucky enough to get through to Miss Sharon the studio owner.  I gave her the brief story of my girl… and with a crack in her voice as she spoke through the obvious lump in her throat as she was clearly moved by Katy’s story she said ABSOLUTELY!  Don’t worry about anything… I have ballet slippers at the studio… just come.  We’ll see if she likes it and go from there.

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The moment I met Sharon I knew she was an amazing person… She cried with me as we watched Katy girl smile a smile so big… it was then that I knew it was for Katy as much as it was for me.  Katy LOVED and continues to love dance class.  Miss Sharon, Miss Paula and Catch the Funk dance studio is such a safe fun place for Kate.  Over the years the love and generosity they have given our family is more than I can ever repay.  The warm smile that is always awaiting Katy is such a comfort for all of us. 

Katy has been sick a lot of this year… and has had to miss a lot of dance.  It’s always a disappointment when she is too sick or in the hospital on dance days.  But with her hard work and the dedication of Miss Sharon she learned the dance for the recital and had her moment to shine.

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Katy LOVES being on stage…she just shines.  Her smile is contagious and for that three minutes I am elated.  The smile is stuck on my face for all of recital day.  I cry… I laugh and most of all I am thankful that Katy has another opportunity to do what she loves.

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Looking forward to next year!!

Tuesday, June 03, 2014

Our life in Pictures-May 2014

Living this roller coaster ride we call life… I really need to blog in real time.  I had this blog post brewing for a couple days… and life was happening, I had pictures that I needed to edit…and thoughts I wanted to gather. I wanted this to showcase a glimpse of our life not in crisis. 

Unfortunately, life keeps happening and blog posts get pushed aside…and now I have to preface this look at our life in pictures with an update on Katy.

It’s been about a month since Katy was diagnosed  with her latest bout of rejection…and the update today was not good.  Katy’s echo today once again showed NO change in her heart function.  Her heart is very stiff, her heart rate is dangerously high, and there is some evidence that her kidney function is not where it should be ( which could be a result of too much lasix, but could be a sign of heart failure) Currently, Kate is at her max for management via her current meds.  In order to make some med changes she needs to have another cath/biopsy to check her pressures and her pulmonary function.  Once we have that info the team can make some med changes in hopes of supporting this heart and getting it back to a happy place. Obviously, this is not the direction we wanted to head in… we all hoped to see improvement in her function by now. We are in a wait and see hold right now until we can get her in for a cath.

June is a crazy busy month for us and Katy has a fun filled calendar of things she doesn’t want to miss.  So we will be struggling with that balance of her health and quality of life… it is the hardest piece for me. I want so badly for Katy to just have a normal life… to not have to spend so many of her days in the hospital.  I totally expected life to be easier post transplant… sadly it has not.

We still try and take it one day at a time and make the most of all our days when we are not stuck in the hospital.

We pack up and head the beach!

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We spend time with cousins…

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I expect that June will be a trying month… I also know that we will do all we can to take advantage of our time together!

 

Friday, May 16, 2014

15 Months

Katy received her gift of life 15 months ago. 15 precious months… that by all most accounts via social media and this blog have been happy fabulous days filled with many firsts and many days to be thankful for.  Of course you have read and prayed over the updates that haven’t been so great…and we have gotten through those bumps that we knew were apart of this new journey. 

But, in an effort to protect you, and myself.  Those prayer requests and updates that were not full of sunshine were very much sugar coated… I made it look like no big deal… just a little hiccup and I drowned those not so positive updates… with tons of pictures of our little girl rocking life with her new heart. 

The reality is for the last 15 months our baby girl has been fighting for her life… harder than she ever did with her old heart. Katy’s cardiologist said… for the last 15 months Katy has been trying to die.

I disagree… Katy’s heart/body may have been trying to die… but Katy, Katy has been fighting to live.

The doctor’s words stung. They still sting. But she speaks the truth.  Katy has had so many complications since her heart transplant.  Complications we were told could happen, but usually don’t and according to the team they never see a child have this many complications of both rejection and infection, and so severe at that, and nobody knows why.

For the first time in all of this… and all of Kate’s life.  I am afraid she may die.

She is not bouncing back in typical Katy fashion. Her echo today showed no change… well that’s not very comforting. There is still a gallop when you listen to her heart. Her heart rate is down… but no big surprise since we are giving her a med to do that for her… I would be surprised to hear if it wasn’t down, and her weight is back up. Usually I can take all that medical stuff and stop and look at Katy and as long as Katy looks well and is doing clinically well… I can pacify myself… well when I look at Katy I see a girl that is white as a ghost… has puffy face… a belly that is distended and low energy…not very comforting. 

Mike and I are looking at Katy and giving each other the look… the look that tells the other she just isn’t right. All the while telling ourselves and each other that maybe she is tired she was up at 530 for clinic… she just got out of the hospital… that her heart was very sick and maybe she needs to relax.  All the while wondering if we are making excuses.

Please continue to pray for Katy’s healing. Please pray that the team can pinpoint what is the problem and why Katy is not responding as expected to the meds and treatment.  Please pray for peace for this mama who is scared out of her mind.  Pray that Mike and I can find a balance and rely on our gut to continue to help guide us in caring for our precious girl.

 

 

Saturday, May 10, 2014

Katy Rejection Take 2 May 2014

Synopsis:

Well the last 10 days have been exhausting, scary and emotionally draining for all 4 Murphy’s.  Thankfully Murphy #5 is safe and happy on the inside.

Really the last 15 months have been exhausting, scary and emotionally draining, that said hasn’t Katy’s entire life been exhausting, scary and emotionally draining?  It has been 6 plus years of worry, it has also been the best 6 years of our lives…and when we are not exhausted, scared and emotionally drained we are loving life with our miracle girl, and her pretty awesome little brother.

Katy is currently dealing with acute Grade 3 rejection.

What is rejection?

There are two types of rejection Cellular and Humoral and it appears Katy is presenting symptoms of both.  Therefore they need to treat for both. I mean this little girl of mine…she is always keeping the team on their toes.  It is not common that a transplant recipient would be dealing with acute rejection not once but twice in such a short period of time.  This in addition to the multiple infections Katy has dealt with… (CMV, EBV and the horrible blood infection she had to name a few) are all HUGE and put a great deal of stress on her new heart. 

Katy is being treated with high doses of steroids and also we added in IVIG treatments. Steroids to treat Humoral rejection and IVIG to treat Cellular.  Thankfully Katy has had a very quick response to the steroids and we have already seen increased function via echo.  However all of that is while her heart is still be very much supported with Milrinone and IV Lasix the true test will be when she is weaned from the Milrinone.

Day to Day Play by Play ( as much as I can remember)

Tuesday April 29th

Katy had a field trip at school.  It was cold and a bit drizzly on our walk.  Katy didn’t seem all that thrilled and a bit more tired than usual.  However, we weren’t worried give that this was her second day back to school since she had her tonsils out last month.

Wednesday April 30th

Katy had a great day at school.  Came home and was tired.  Said she was too tired to go to dance. Fell asleep on the couch.  Woke up with a belly ache was hungry had some soup and vomited.  Spent the afternoon early evening on the couch complaining her belly hurt.  Woke up at 7pm and appeared puffy. Puffy (fluid retention and vomiting reason to call the team) Called the team decided we should head in just to be safe… Mike and Katy head to the ER.

Initial labs come back fine… no infection at this time I am thinking it is rejection.  Weight is significantly increased from 2 weeks ago… chest x-ray confirms Katy has fluid on board. IV Lasix is started and it is decided she will be admitted.

Thursday May 1st

Katy’s echo is horrible… the team is very surprised at how poor her function is and how much has changed since her Echo 2 weeks ago. Katy needs to go to the cath lab to have a biopsy ASAP.  Katy is very unstable and everyone is on edge ( except for Katy) She had some funky beats in her EKG that has put everyone on high alert.  Katy’s heart is very sick and she is at an extremely high risk of cardiac arrest.

Katy is so fragile that it is decided that they will not intubate her for the Cath.  She is sedated. She will be admitted to the CICU after biopsy. While in the cath lab the team has a chance to see just how sick Katy is… without the biopsy results the decision is to treat aggressively her Grade 3 rejection.  She is started on Milrinone and high doses of Lasix and diuril… the hope is to let her heart rest.  Dr. Blume prepared us of the possibility that Katy may need Ecmo to help give her heart a break.  Hearing the word Ecmo is devastating to both Mike and I.

Thankfully in her true ROCK STAR fashion…Katy holds her own and we avoid Ecmo.  Katy has a quiet night.

Friday May 2nd.

Long day for us and Miss Katy....lines in...lines out. Steroids are making our sweet sometimes a bit sassy baby girl... A completely out of control monster.
Unfortunately the preliminary results of the biopsy didn't provide a lot of information. They weren’t good samples...so the team does not feel that they (the samples) in terms of grade of rejection can accurately put a number on rejection. The thought is based on her poor function via echo... Her high heart rate and her troublesome EKG we can assume it is a grade 3 rejection.
The plan is to keep trying to get the extra fluid off... Keep the milrinone on board to help support her sick heart and pray that it works continue with the super steroids.

Saturday May 3rd.

I thought the roid rage was rough yesterday!  Katy had me in tears today.  It breaks my heart to see my poor girl so miserable.  I miss my sweet and smiley lovey. The hospital gave us two tickets to the Red Sox game today and I am so excited for Mike and Patrick to have a great day together. Working towards getting moved to the floor today.  I think being out the the ICU will help improve Katy’s mood. 

We made it to the floor! Patrick and daddy had fun at the game and I am finally seeing Patrick I have missed him so much.  Patrick and I are headed to the hotel for a sleep over… ( I am OK leaving the hospital, knowing I am in the building next door)

Sunday May 4th.

It’s amazing what a hot shower and a good nights sleep can do for a person.  Spent the day together up and riding bikes… Katy appears to have turned the corner.  THANK YOU GOD!

Monday May 5th

It's a good morning! It appears Katy has turned the corner. She woke up at 5am ready to start her day with a smile on her face...some pink color on her cheeks...and a hungry belly. She spent most of the night peeing...which is great since we need to get that fluid off... And her face is back to normal. I suspect that her echo will show much improvement.

Echo does show improvement however the team is still being very cautious and has no plans to wean her Milrionone.  This is very discouraging to me.  We really need to be cautious and baby this heart.  I expect this admission and recovery to be much slower then usual.

Tuesday May 6th

Today Katy started her 1st dose of IVIG treatment. It looks like Katy also received a singular dose of IVIG during her last bout with rejection over the summer. I was wrong thinking this was her first dose.  It is unknown at this time if we will continue on with a long term treatment plan of IVIG.

Still no talk of lowering her Milrionone. 

Wednesday May 7th

The decision was made at rounds to lower Kate’s Milrinone to 5.0 down from 7.5.

Katy & Patrick had a great day today! Lots of laps on the bikes and games in the play room.  Katy is definitely back to her old self. Patrick has spent a lot of time at the hospital this admission.  He is that much older and mature that he can handle the long days.

To be continued…

Wanted to share what I have now… will update.

 

 

 

 

 

Thursday, April 24, 2014

14 Weeks Baby #3

 

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How far along: 14 weeks.

How big is baby: Baby is just over 3 1/2 inches and comparable to the size of a lemon.

Weight gain/loss: No gain/no loss. Holding my own.  I imagine now that I am in the second trimester and I am able to hold down some of what I eat.  I will see a gain.

Stretch marks: So many from K & P… I have no idea if there are any new ones Winking smile

Sleep:  UGH! Sleep is already hard and has been from the start.  No big surprise since I had to give up my long love affair with Ambien… But, I have been napping which makes night time sleep harder… I also always get restless leg syndrome (or what feels like RLS)  when pregnant…this pregnancy is no different. 

Cravings/Aversions: I crave carbs and fruit… I can not get enough fruit ( Cantaloupe and grapes are my current faves but I eat them all) I am also craving fountain Coke… I gave up soda prior to my weight loss surgery and I honestly thought I would never have it again… well lets just say it tastes as good as it did pre surgery and if you bring me a coke from McDonalds I will love you forever.

No real aversions… I never know what will end up being an issue.

Movement: I think I have felt some flutters…

What I'm loving: I'm loving how quickly Katy and Patrick have come around to having a new baby.  Patrick even kisses my tummy goodnight.  Katy loves picking out things for baby.

Symptoms: Well, I had a pretty typical first tri: constant nausea, absolute exhaustion. Second tri has started out a bit easier less vomiting… a little more energy.

What I'm looking forward to: I am looking forward to enjoying this spring weather… and hoping the nesting instinct kicks in sooner than later.


Best moment of the week: Easter fun with the family!

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Sunday, March 30, 2014

Simple Tonsillectomy….

Katy made a heart transplant look like a cake walk, however a simple Tonsillectomy caused my girl to need a crash cart.  I know I should always be prepared for Katy to react in true Katy fashion.  But, I have to say I did not expect what unfolded in the PACU on Friday afternoon.

Katy was scheduled for a tonsillectomy due to her enlarged tonsils that resulted from her viral infection back in February that caused her to go septic. Transplant patients are at risk for EBV =The Epstein Barr Virus better known as Mono.  This is one of the most common viruses that most of the population has.  However due to Katy’s compromised immune system due to her anti reaction medications she is unable to fight this virus and left untreated can lead to PTLD which is also known as Transplant Cancer and usually is fatal. 

Of all the complications that one can have post transplant (and Katy has had most of them) you never want to hear PTLD Lymphoma.  We heard those words and I nearly died… I could NOT believe that we were facing that diagnosis… and we weren’t YET.  But the EBV virus lives in her tonsils and they needed to be removed ASAP and would be sent for biopsy.

I hope that clarifies that this was not just a routine elective surgery… this was completely necessary and needed to be done ASAP. 

The morning of the surgery the surgeon decided that it made sense to add an adenoidectomy… due to Katy’s snoring etc.

The surgery took less than 45 mins and we were back with Katy who was feisty and demanding apple juice. She was given Tylenol and morphine for pain.  The morphine made her sleepy and her sats were dipping so she was put on blow by to keep her sats up.  After about an hour Katy became bright red and extremely sweaty…no fever.  Sats were now dipping while on blow by. Our nurses demeanor changed and I knew something was up.

The attending from anesthesia was called and could not get Katy to respond…he immediately called a Code Blue Respiratory  arrest on our baby girl and everything became a blur as they were bagging my girl and yelling out meds Nitric Oxide and I am not sure what else… all in an effort to wake Katy up.  I am sorry to say… but I lost my shit and was rocking in a corner of the PACU praying…begging and pleading with God not to take my baby. I really thought that Katy was gone… I didn’t and I don’t know how this tiny little 35lb baby can keep bouncing back… how she can keep fighting. But she did and I heard her scream from across the room.  Once again our prayers were answered. 

WHAT happened and WHY? Well it seems that it was most likely the perfect storm.   The combination of the dose of Morphine with the residual meds used in Anesthesia during surgery and Katy’s uvula was HUGE from swelling which was blocking her airway.  Katy was retaining Co2 her blood gasses showed her Co2 was 160 and it should be in the 40’s.

Katy was given meds to help with the swelling in her throat and was put on Bipap… and we prayed that would work and she would not need to be intubated.

We were then admitted to the CICU and Katy woke up again and wanted the mask off… we took it off her sats were holding well on blowby…until she fell asleep and then she had a few episodes when she would dip into the low 70’s… her airway was blocked again and she was not moving air. She was put back on Bipap until early Sat morning 5AM when she was wide awake and held her own all day even while napping after being given a dose of oxycodone. She woke up and was eating (chicken Fingers… cheese its) and drinking.  We said we were ready to leave and the team agreed.

Friday Code Blue… Saturday home! That is how Katy rolls.

 

Wednesday, March 12, 2014

Lots of Catch Up

I have been spending most of my free time crafting.  My goal is to be up to date when the new baby comes.  Since I have yet to scrapbook Patrick’s first year… it’s safe to say I have a lot to do. 

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