A Week of Recitals

First we had Benjamin's 6th grade band recital - so proud of him.

Today we had Mia's ballet recital - love watching my girl dance, she enjoys it so much.

Flowers from Daddy

Wow - we actually got a picture with Lily smiling (she laughs and smiles all the time, just never on camera).

Saying goodbye to the "Mullet"

Lily's hair growth in review

July - 2010 - when they handed Lily to us she had no hair, not because it couldn't grow, but because they shaved it off in China.

September - 2010

October 2010

November 2010 - look how thick it is, it was never this flat, always sticking up

Christmas 2010 - it started to grow at the back - people stopped mistaking her for a boy (probably because I cold finally put a bow in her hair).

April 2011 - we have the "Mullet"

So it was time for Lily's first haircut

with a little distraction from food - this cooperative attitude lasted all of 5 min then it was a matter of trying to hit a moving target.

Introducing the "BOB"

Thanks Kym - you did amazing - how did you get it so straight on such a moving target?

Don't I look more like a three year old - not a baby anymore :)

Saturday night fun

So we packed up the kids, our 4 plus 3 extra, and headed down to River Rock

paid $5 for parking

walked

got onto Brown's Island

decided to get in the food line

spent 15min deciding what everyone wanted to eat

when they announced they were evacuating because there was a thunderstorm coming

gathered the kids together

got off the Island(with the other 100's of people)

walked up the hill to the car (just made it before the sky opened up)

sat in line to get out of the deck

Little Ceasers pizza on the way home to feed 7 hungry kids

back to the house

rain has stopped

note to self - check the weather next time

that was a fun way to kill 2 hrs on a Saturday night :).

Lily's Journey to a Stronger Heart - 10 continued

We drove to CHOP on Wednesday, and Lily had her appointment Thursday morning. We were able to get a last minute room at the Ronald McDonald House - what a fantastic facility, and wonderful organization, they took such good care of us.

We were at the hospital at 7:20am, first they took her for an echo, without sedation - not fun. She wanted nothing to do with it and screamed the entire time - I'm not sure if they got anything useful from it, but they said it was fine. Amazingly she was very cooperative for her EKG, she was also completely cooperative for her blood pressure checks - I think for the first time ever. Then we waited, and waited to meet with the cardiologist. Finally at 11am we met first with the nurse practitioner(Katie) and then the cardiologist. I had been corresponding with Katie via phone and email for a few weeks now, so it was great to finally meet her - she took a lot of time to explain things to us - she was great and you could tell she really cares. The cardiologist was also great - and spoke very frankly to us - which we appreciated - even if it wasn't all we wanted to hear.

So this is where things stand as of now: Lily's heart condition is very serious, and this is very much complicated by her pulmonary hypertension. In his opinion the odds of her ever getting the surgery she needs are not in her favor, but not impossible. Without surgery she may only live into her teens. His goal right now - optimize the medication she is on for the next 9-12 months giving it every opportunity to decrease her pulmonary hypertension and then do another cardiac cath and see how things look. He was very pleased with how she looks right now, and so we will continue on the medicine, go back up to CHOP in the fall for a check up and then probably recath next spring. So for now that is our goal - thinking to much about the what ifs is to hard, right now we are focusing on the next year, not the next ten years.

Nothing we heard was a surprise, but there is always a little part of you that is hoping to hear something amazing. We left feeling a little shaken - not because anything had changed, but just because every time a doctor tells you your daughter may only live into her teens it's a sobering feeling, and the reality of what she is facing is once again right there in front of you. Most days we don't focus on the future, but are looking at now, focusing on the daily miracles, enjoying the smiles and laughter, her quirky personality, and her many developmental accomplishments. Our home is just like everyone else. We are busy living life - faced with the continual challenge of keeping a home functioning amongst the craziness of life while trying to maintain a balance - making sure we experience all that life has to offer and not just let it pass us by. This journey we are on with Lily has challenged us as a family to be present in the moment, see what is right in front of us and to be grateful for what we have now.

All we really know for certain is God gave Lily to us, so that she could know the love of a family, and for however long we have the privilege to be her parents we will love her with all our hearts, give her every experience we possibly can, and be grateful for every moment we have with her - she has already been such a blessing to our family, we will be forever changed because she is in it. Don't get me wrong we are by no means giving up, we have faith for a miracle.

The video below is a song that does a good job at expressing how we feel about Lily, and the journey with her so far. Although I never carried her inside of me physically I carried her in my heart for months, and when they handed her to us in China it was like the day the boys were handed to me in the hospital - like this song mentions we knew from the moment we saw her she was fighting for her life (warning you may need a Kleenex).

Thank you all for your continued love, prayers and support - it means more than we can express.

Lily's Journey to a Stronger Heart - 10

I know it has been a while since I updated on Lily, but life has been crazy busy recently.

We are getting ready to take Lily to Children's Hospital in Philadelphia on Thursday. The appointment is at 7:45am so we will be driving up tomorrow. It is four hours away from us. They will do an echo, and EKG, and then we will meet with the cardiologist. The main purpose of this visit is to meet and talk with the cardiologist, so that he can examine Lily and she can become his patient. We are excited to move on to the next chapter in Lily's journey and feel very strongly that this is the place she needs to be. With the vast amount of experience and expertise they have at CHOP we feel that we will be able to confidently make decisions on advice that we know we can trust.

Lily is doing amazing, she is continuing to grow and develop. She can now get herself from the ground to sitting and sitting to the ground. She is all over the place and in to everything. Drinking from a straw and eating food. We are continually thankful for every little milestone we see her hit. It is amazing how your perspective on things change when you have a child with special needs. Things that seem so basic, are now such victories. The little things are big. She continues to bring so much joy to our family, her personality continues to come out, she is very goofy, determined, and happy.


Look at her standing with daddy




Beautiful girls




Daddy's girl

Quick update on Lily

So it's been 10 days since her cardiac cath and I feel like life has been on fast forward. Thank you to all of you that have offered advice, prayers, words of encouragement, and information on your own experiences with your children with heart conditions. It has all meant a lot, and has contributed to getting us to the place we are at now.


We have been in contact with Children's Hospital in Philadelphia (CHOP). They are ranked number two in the nation for pediatric cardiology, and number one for pulmonology, they are only a four hour drive from us, they have been recommended to us by many of you, and we feel confident if there is another answer then that is where we will find it. They responded within two hours of us contacting them, we have already been very impressed with there professionalism, care and concern. On Thursday we had all of Lily's test results fedexed to them, once they have reviewed them they will set up an appointment.

It looks like they may do another cardiac cath. What we know about the last one is that they had a hard time sedating Lily, so she was awake and fighting through most of it, this could effect the accuracy of the results - we will see. There is a doctor at CHOP that specializes in PH, so we know that whatever we are dealing with we will have the expertise we need.

FYI - Lily is happier than we have ever seen her, laughing and smiling all the time -she makes this journey a lot easier to bare for her momma and dadda - rejoicing and thanking God for all the little miracles we have already seen.

Lily's Journey to a Stronger Heart - 9

First we just want to say thank you to all of you that have prayed for us, sent us messages, and showed your love and concern for us over the last few days - it has meant so much.

I apologize for not posting sooner, but we have had a lot to process since the cardiac cath on Thursday.

As you know Lily has been on Sildenafil (viagra) to treat her pulmonary hypertension(PH)since early December. We have seen very positive results since she has been on the meds. Her oxygen sats have increased from the 70's to mid to upper 80's, she is less blue, full of energy and overall very healthy. Developmentally we have seen her learn to sit, scoot on her tummy, use signs to communicate, start to eat food and say momma and dadda (which she said first) - which you can imagine was indescribable to finally hear.

Because of her improvement our cardiologist decided we should do another cardiac cath to see how her PH was doing, we were all extremely hopeful it had come down - the results we actually got were completely unexpected and very hard to hear. Her PH actually increased and increased quite significantly. As a result our cardiologist told us, she would never be a candidate for surgery, and we now needed to just teat her medically and let things take its coarse - she has a hole in her heart which is getting smaller if this closes they would go in and place a shunt as she needs the hole - bottom line we need to provide her with the best quality of life we can for as long as we can. As you can imagine this was all very hard to hear, since returning from China and finding out about her PH we have always known that her diagnosis could be poor, but we had no idea we were there yet - surely there is more to try and do.

So after several days to process where are we now?

1. We know God is the same God yesterday, today, and tomorrow, He knew what the results were going to be, and He has Lily in His hands - this is all apart of the journey.

2. God gave Lily to us to be her parents, and as her parents it is our responsibility to advocate for her.

3. We are going to get second opinions, we will go see the top doctors in pediatric pulmonary hypertension and cardiology, and see what options we have. We may end up back here with the same results, but at least we will feel secure in what we are being told, and will know we did everything.

4. We have no idea how long Lily is supposed to be here with us, but for however long that is we are going to enjoy every moment, balance looking to the future with living now. What we know is - RIGHT NOW she is the healthiest she has ever been, she knows love of a momma and dadda, brothers, and sister, extended family and friends. She smiles, laughs and plays, and brings joy to everyone that meets her.

Thank you again - as soon as we have more concrete plans we will be letting you know - it means so much to know we are not on this journey alone.