Surgery Recap and Day One

I know most of you followed our updates on Lily yesterday via facebook, so sorry if this is repetitive, but I want to post here for those who only check our blog and for our own personal journal.

 

We arrived in Philly on Thursday so Lily could get blood work drawn in preparation for surgery. She did great at the hospital, cooperated, and showed no signs of stress.  She has come so far from the girl that would start crying as soon as we took the hospital exit off of the highway, and not stop until we left!!

 

 

 

 

 

We were very excited to get a room at the Ronald Mcdonald House - what a blessing and amazing charity.  Not only can we stay there for very little cost, but they provide a meal every night, you can do laundry, and also meet some amazing families taking care of their sick children.  One ladies baby has been in the hospital for a year - I can not imagine!!

 

Lily got a good night sleep and woke up ready to go for the big day.  She walked into CHOP, smiling and laughing!!

 

 

 

 

She did great during the preop, held her arm out for the IV and didn't even cry.

 

 

 

 

 

 

 

 

 

They gave her some "happy meds" before wheeling her to the operating room - she was hilarious, she almost immediately started laughing, she laughed all the way to the elevator, where we had to say goodbye.

 

 

 

 

This was the hardest part for me, watching them take her away, but only a few moments for tears and it was off to talk to the cardiac surgeon, Dr Spray.  He explained what they were going to do.  We discussed the two procedures, the Glenn and Fontan.  He told us that he would probably only do the Glenn and would wait to do the Fontan, once we new how her lungs were responding.  We discussed the pros and cons, and the plan was that he would decide once he was in the OR and could reevaluate

the pressures in her lungs.

 

After about an hour our nurse came and told us he had just started, within 20 mins he was back to say the Glenn was done and he had started the Fontan.  Wow this was fast, which made us very happy as the less time she was on bypass and her heart was stopped the better.  Within another 20mins we were told he was done.  They then had to rewarm her body, place some monitoring lines into her heart and lungs, place a chest tube to drain fluid, restart her heart and close up her chest.

 

After about an hour we met the surgeon, who was able to tell us the news we had been waiting to hear all day, well actually for 3 years!!

 

Her surgery was done, she was doing great and so far there were no complications!!!

 

Seeing our girl for the first time was such a relief, it was like letting out a breath you had been holding all morning.

 

She was already extubated and breathing on her own!!

 

 

 

 

She was hooked up to many IV pumps and lines

 

 

 

 

She woke a few times during the day and night, drank some juice and even ate a yogurt, but mostly was sleeping with sedation and pain medications.

 

I made the very hard decision to go and sleep at the the RMH, last night.  I hated leaving, but the fact that she was looking so good, and was sedated, and with the promise from our nurse to call me for anything, I decided to go.  It is only 3 mins away, and I was so exhausted.  I am very grateful today that I made that decision.  I came back early and she was sound asleep.  She had, had a great night, and I felt so much better, and have been able to be here today when she has needed me.

 

 

 

 

Chris and I are in shock at how fast things are moving and how well she is doing. 

 

Today she has had her Fontan line removed, 2 internal lines removed, her foley removed, IV fluids stopped.  She has been taken off all her IV cardiac and sedation drips.  She has drank juice and had 2 yogurts.  She is still on nitrate through the cannula in her nose, which they are slowly weaning, but not rushing because of her pulmonary hypertension.  They are hoping to have it off by morning.

 

 

 

 

 

She even had about a 30 min period where she was smiling and almost laughing, you can only imagine how good this made us feel.

 

 

 

 

 

 

 

 

These were the big steps forward she made today - amazing

 

We have also had a few steps backwards.  She started vomiting this afternoon and did 6 times.  She is now refusing to drink and has had no urine out since her foley was removed, so they have restarted some IV fluids.  She is grinding her teeth, something she used to do when we first adopted her.  It is something she did when she was stressed, she hasn't done it in 2 years.  It seems she is doing it when she is in pain, so at least it is helping us tell when she needs meds.

 

She finally made it out of the bed today for about 10 mins and I got to hold my precious girl, no words!!

 

 

 

 

Chris and I want to thank you all for the amazing love and support we have felt from everyone.  Your prayers and love carried us through yesterday.

 

We are so grateful to our heavenly father for taking such good care of our girl, we are in awe that we are on the other side of this day, a day that we were told may never come.  We can not tell you enough how at peace we felt yesterday and how we see His hand in so many of the details. We truly feel we have seen a miracle unfold over the last 3 years.

 

 

Here is Lily's gotcha day video - I love to watch it and see how far she has come.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 



Here We Go Again

We leave tomorrow for Philadelphia for Lily's heart surgery, which is scheduled for Friday

Although it was hard when it was postponed 2 weeks ago, you can read about it here  (as well as details on the surgery),we are now very grateful for the extra days we have had together as a family

To enjoy moments like this

and to be blessed to be here for Cole's first day of kindergarten.  When you adopt an older child, you miss SO many of their firsts, grateful I didn't miss this one (thanks Jen for the reminder)

Sometimes things don't happen according to our plan, and in the moment it is hard to see the reasons, but we have seen many reasons over these two weeks. What was such a hard situation has turned out to be such a blessing. Continually reminded to trust in our heavenly Father, who knows and sees way more than I do. 

Please pray for our precious girl, handing her over to the surgeons on Friday will be one of the hardest things we have ever done.  Our peace and comfort comes from knowing, that ultimately she is in God's hands.

We will update regularly on facebook and here, we don't have a time for surgery yet.

Back to School 2013

Benjamin is starting high school

Ethan is in 7th grade

Mia is in second grade

Cole is starting Kindergarten

It was a big decision to decide to send Cole to school this year. We were originally not going to, but he is doing so well, was in Kindergarten in China last year, wants to do whatever Mia does and is used to the structure. Also with me leaving with Lily for surgery on Thursday, we felt it may be the best thing. We are honestly not certain, but decided to try, if it is not the right decision we will take him out.  He was very excited this morning though.  Holding my breath today, and just managing to keep my emotions under control, can not wait until 4pm!! Praying for Him today and all my babies.

Lily would have started Kindergarten today, but we are waiting until after her heart surgery!

Lily Update

Today I feel a little strange, I can't really describe how I am feeling.  I should be sitting in a hospital waiting room, praying, thinking, pacing, longing to see my precious girl and hold her in my arms again, but instead I am home, sitting on my deck, watching my kids play on the trampoline, while my precious girl sleeps safely and happily in her own bed.

You see Lily was supposed to have major heart surgery yesterday.  As most of you know we have been waiting for this day for three years, since we bough her home from China, a very sick little two year old. If you have followed Lily's journey you know that it has been a roller coaster ride.

Due to the pulmonary hypertension in her lungs she has been unable to have cardiac surgery. She has been treated medically for 3 years, with the hope of her lungs improving.  We were initially told she would never get surgery and she would live as long as her heart could survive.  A year later after a second opinion and treatment, we saw a miraculous improvement in her lungs and were told surgery was possible.  Then 3 days before the scheduled surgery, the doctors bough up concerns and decided she was still to risky and we should wait.  In January she was supposed to receive another cardiac catherization to check her hypertension, but due to there being no cardiac ICU beds it was cancelled.  She finally received the test in March, where we were given once again miraculous news, her lungs were even better - this time surgery was definitely a go.

January 2012 we started the process to adopt again, at the time we had been told Lily was getting surgery that summer, the adoption would be at least a year later, so we were good.  Well with the delay in surgery by a year, it quickly became obvious that these two events were at risk of colliding.  As it looked like Cole's adoption would happen in August or September, we started pushing to get
Lily's surgery in May or June 2013, unfortunately because our cardiac cath had been rescheduled, our surgeon was already booked, through August, so we took the first available date August 22nd, today!!

Well as you all know theses two life altering events happened almost back to back by 11 days.  The logistics of planning for both, packing, child care, school starting, bonding to a new child (that's just the highlights), then never mind the emotional drain has been intense.  With the surgery I was planning to be gone for at least 2-4 weeks, possibly longer.

I can't explain how the last 11 days have been.  Of coarse they have been filled with joy as we integrate Cole into our family, but also full of pressures, errands, jet lag, and emotions as we anticipated surgery.

You see, although we know it is miraculous that we are at this place of surgical intervention for Lily, are grateful  to God, and trust our heavenly father with our precious girl.  As her parents we were dreading handing her over to the surgeon. We were ready, but we were not reading, if that makes any sense.

Needless to say yesterday was a day full of emotions.  We were tied, the logistics of packing for 7 people, and making sure things were straight for back to school, meant a late night.  We needed to leave by 8am so the night was short.  Saying goodbye to our other children, especially Cole was emotional, but I have to say he did great.  He went off quite happily with my mom.  We arrived for our 1pm preop appointment early (that's a first), so had some lunch.  Lily was doing great, not overly stressed about being in the hospital.  We started our preop visit, vitals, EKG, chest xray.  Then one of the surgeons came in to explain the surgery.  The exciting news was that when they had discussed Lily's case that week, everyone was on board with the decision to do surgery, unlike last year.  The surgeon decided they would do what the call "the full Monte".  Although final decisions would be made in the operating room, if things went to plan, they would do a Bilateral Glenn, Fontan and fenestration, as well as other possible procedures all at once, instead of doing two or 3 separate surgeries.

Then it was time for the dreaded risk talk, and with this kind of major surgery there are of coarse many.  After a few tears as the realization of what you already know hits even harder you have to sign consent.

This was then followed by the news that there was a scheduling problem and they weren't sure yet if the surgery was going to happen the next day.  We were told to hold on and as soon as they new they would let us know.  About an hour later it was definite, it was cancelled.  Our surgeon, the top cardiac thoracic surgeon at CHOP is under high demand and there was an emergency that required his skills.  He felt that because Lily's surgery was so big, he could not try and do both in one day.  Of coarse we appreciate that, you want the man operating on your child heart to be at his best, and we understand that Lily is stable and this other patient isn't.  It is what it is, but it was hard to hear and emotional.  All that had gone into getting us there yesterday, the emotions, were hard to contain.  Yes I shed a few tears, our nurse practitioner even shed some tears with me (love her).  Our cardiologist came to speak with us, and was obviously very upset by the situation, but there was nothing to be done, so we packed up got in the car and drove the 5 hours home (in rush hour traffic).  Picked up our kids from my mom and went to bed.

We were told they would could all us to reschedule and hopefully surgery would be 2-3 weeks from now.

We are filled with mixed emotions.  Upset because we were ready, prepared, and had worked so hard to prepare for today. We do not want to go through the emotional anticipation of the surgery again, we want to be on the other side, with her doing great!!  And then there is this sense of relief after hearing all the bad things that can happen you just want to take her and run in the opposite direction.  You now have a temporary out.

So here is where we are at today.  We are choosing to trust God as we have with Lily since day one.  We are taking this extra time before the kids go back to school as a gift. Time to have some fun as a family with Cole.  I have already done the school shopping, done all the laundry, cleaned my house.  This logistically may work better as the kids will be in school.  We have time to prepare more, and I can be here when school  starts. We are going to continue to move forward and walk through the doors as He opens them.  We are choosing to dwell on the positives of the situation.

The biggest of which is this

and being here for this

and for the fun I have had hanging out with Ethan today, and spending time with Benjamin while driving him to band camp.


We want to thank you all for all your prayers, love and support over the last few days, it means so much.  We will continue to update and let everyone know as soon as we have a new surgery date.

Lily's Gotcha Day

Happy Gotcha Day Lily

 

3 years ago today we met Lily.  You all know her story and our journey. 

 

 

 

 

 

(video of Liy's first moments with us)

 

 

As I sit in Chicago airport typing this, while waiting for a flight to Hong Kong to adopt Cole, it is hard to believe that we were in this same airport 3 years ago almost to the day.  Their gotcha days will be 4 days apart :)!!

 

 

 

 

(Lily in China day 1)

 

 

She has come so far, and she is about to face a HUGE milestone in her life with her open heart surgery on August 22nd.

 

 

                                                         

                                         

 

(one year home)

 

 

We have grown and changed as a family because of Lily.  She has taught us so much, and she is loved deeply by all of us.

 

 

 

(lily home 2 years)

 

 

We can not wait to see all that the future holds for our precious girl
 

Lily Update

I apologize for taking so long to update on Lily - life is moving fast in the Yeatts family these days as we prepare for traveling to China for Cole and

 

 

Lily's OPEN HEART SURGERY

 

 

We have a date

 

 

AUGUST 22nd 2013

 

 

 

It has been decided that due to the fact that Lily's lungs are looking so much better, and her pulmonary hypertension has decreased so much, they are going to do one BIG surgery, the Fontan and skip the Glenn.  This is great news as it means only one open heart surgery for Lily, but it also means the surgery will be more involved and recovery will be longer.

 

 

 

 

We have to be in Philadelphia at CHOP on 8/21 for her preop visit.  We are not sure how long we will be there, but are preparing for a month.  It could be shorter or longer, it all depends on how she does.

 

 

This was not our original plan.  We had wanted her to have surgery, in May or June, before traveling to China to bring Cole home, but that didn't happen.  It will be hard to return from China with Cole and have to leave so soon to take Lily.  This is why we need to travel to China as SOON as possible.  WE are hoping to leave sometime around the 20th of July, which would give us 2 weeks home before we have to be at CHOP.

 

 

Please pray that we can go to China soon - we still need our TA (travel approval)

 

We are so grateful to God that Lily is able to get surgery, this is something that we were told may NEVER happen.  She is such a joy to us, and has come so far.  It is scary putting our precious girls life into the hands of the surgeon, but we know that the great physician (our Heavenly Father)will be right there with her. Her diagnosis of Tricuspid Atresia, ASD, VSD, and half a heart, meant she is palliative, she can't be fixed - with this surgery she will be able to live well into adulthood, with out maybe only 5 more years (or less).  The surgery is risky, but we know God has opened a door we were told was closed to Lily, so we are walking through it trusting Him.

This is an emotional time, with the surgery and bringing Cole home, please continue to pray for us.  We need to get Cole home now.

 

 



Leaving for Philadelphia and Lily's heart cath

Tomorrow morning we are getting up early to drive to Philadelphia.  Lily will finally be getting another heart catherization on Tuesday.

It has been 14 months since her last one.

                                                   (pre-hospital dinner -  mac and cheese her fav.)

 We are excited to find out what is going on with her lungs - if her pulmonary hypertension has decreased?

Will she finally be able to get heart surgery?

We are also nervous, she is doing so well, she is happy, growing, developing.  We know she needs surgery, it is what we are praying for, but the though of her going through it is hard!!

We appreciate all your prayers and support, it's a big week for our crazy, wild, princess :)!

February is Congenital Heart Defect awareness month

I wrote a guest post on 28 Days of Hearts about Lily today.  Go check it out  here each day during February and read about some amazing adopted children all with congenital heart defects. Their stories of survival, and endurance are inspiring.

LILY'S CATH IS CANCELLED

Due to the hospital having no beds in the cardiac ICU we have had to cancel Lily's cath for next week.  They require her to spend one night in the ICU for monitoring after the cath.  We could take a chance and drive up there, but as they feel it will more than likely be cancelled, and we live 4 1/2 hrs away, we decided it was better to reschedule.

The plan is to reschedule for March

If they results are good, we are hoping for surgery in May.

At first I was disappointed, not that I want her to go through this, I know how terrified of the hospital she is, but it is hard not knowing what is going on inside of her.  She is doing so well outwardly, but we have no real idea as to what her pulmonary hypertension is doing!!

By postponing the cath we aren't changing plans for surgery, we were always shooting for May/June. 

We will now just have to wait longer to find out if she is a candidate for surgery or not

Our journey with Lily is continually teaching us to trust more and more on our heavenly Father, we are not in control - I have to tell myself that over and over again.  Oh how I like to be in control (yes I am a bit of a control freak)!!

Lily's heart update - and turning 5

Lily will be heading to Children's Hospital in Philadelphia next

 

Tuesday for her

 

  Cardiac Catherization and Cardiac MRI

 

which are scheduled for

 

January 23rd

 

 

 

Since her surgery was cancelled last spring, we have added one additional medication to treat her pulmonary hypertension.  She has been doing amazingly well.  Growing, developing, and bringing much joy to our family.  The purpose of this cath is to determine if her hypertension has further decreased to a level that the surgeons feel comfortable moving forward with her first cardiac surgery the Glenn.

 

Please pray for Lily next week as she hates going to the hospital, also for safety during the procedure, and for the results.

 

We will up there for 3 days, and will update on facebook.

 

 

On January 5th Lily turned 5

 

 

 

 

 

It is hard to believe - she has changed so much in 2 1/2 years. She is keeping us on our toes, into everything. Her favorite occupation, turning on taps and flooding the bathroom!! This in itself is amazing, considering she spent the first year with us terrified of water!!

 

We love you beautiful girl

 

Happy Birthday

 

Celebrating Two Years With Lily

Two years ago today Lily officially became a Yeatts forever!!

At 2 1/2 she weighed 13lbs, she could not sit, or talk and was so blue when we first saw her we just prayed God would help us get her home so we could get her the medical help she needed. 

Despite her fragile state, the joy and privilege we felt at that moment to be her parents is indescribable.  She would be forever loved.  Not only by us, but by her sister and brothers, grandparents, great-grandparent, aunts, uncles, great-aunts, great-uncles, cousins, and friends. She had a family!!

Sealed by our thumb prints and her footprints she was ours!!

She is now 36lbs, walking, smiling, going to school, and a lot less blue!!

Yes she still needs cardiac surgery, yes she still needs her lungs to improve, she she still has developmental delays, but watching lily change over the last 2 years has been like watching God perform a daily miracle in our girls life - and we know He is not done yet!!

Happy Gotcha Day Lily Stella Yeatts - you are loved SO much

A few details for those who want to know

Sorry I have not had time to post sooner, but things have been a little crazy for us as a family.

I wanted to explain in a little more detail why Lily's open heart surgery was cancelled!!

Our cardiologist called us Friday morning (4 days before her surgery), as soon as I answered and heard his voice I knew something was up, usually his nurse practitioner calls us, unless it is to discuss something important.

As you know the reason Lily has not had surgery so far is because she had severe pulmonary hypertension, you also know the exciting news that it had decreased to a level where her cardiologists felt she could have the surgery and there was a high chance it would work.

As well as the hypertension there is another number they follow called the pulmonary vascular resistance (PVR).  A normal healthy persons PVR is 2 or less.  Lily's initially was 6 (high) and decreased to 3 which was fantastic.

When the team of cardiologists met a few days before her surgery to discuss her case one more time, two of the cardiologists bought up the fact that the PVR was 3 when ideally they would like it closer to 2 to give the surgery more of a chance to be successful and to put Lily at less risk.  Their thought is that Lily is doing so well so why rush into surgery when we can treat her and try and get the PVR down and give her a better chance of a successful surgery.

Of coarse we are in agreement with this, and of coarse it would have been nice to have had this plan a little sooner, but we can't change that, so now we just go from here.

We don't have  an exact plan yet, but she will be put on some other medications to treat the PVR, and then probably reevaluate in 4-6 months from now.

Meanwhile we get to enjoy Lily, I know if she understood what was going on, she would be thrilled to be not having cardiac surgery right now!!

We just wanted to thank you all for your support, kind words and prayers for lily and us, it means more than we can express.

Lily's Journey to a Stronger Heart - 13 (the Surgeon Said Yes!!!)

So here we go

Lily is going to have cardiac sugery.

Our cardiologist gave all of Lily's information to the cardiac surgeon at CHOP and he said he would recommend surgery, and soon.

He feels with the decrease in her pulmonary hypertension we have a window, and need to take advantage of that.  We don't have a date yet, probably early May.  They want to get out of winter, so to decrease the chance of her getting a cold.

The surgery she is getting is called a Glenn procedure, she will then need a second surgery, the Fontanne, about a year later.

There was a possibility they would do one big surgery, but because she still has hypertension and is considered high risk, it is safer to do two seperate surgeries.

Both surgeries will be open heart, and she will go on bypass.

So how are we feeling about this news???

Of coarse we are thrilled and excited, this is what we have been hoping and praying for, what the medication has been for, what the doctors had said would most likely never happen - so this news could not be more amazing.

 On the flip side, we are nervous, not fearful, just concerned for our precious girl. 

She is doing so amazing, so happy

What we know is that is it is a miracle that we are at this point, and we know that if God has opened this door, then we need to walk through it, trusting him all the way.



What we know is that is it is a miracle that we are at this point, and we know that if God has opened this door, then we need to walk through it, trusting him all the way.


the thought of jeopadizing that is unthinkable.

What we know is that it is a miracle that we are at this point, and we know that if God has opened this door, then we need to walk through it, trusting him all the way.

When we adopted Lily a year and a half a go, we expected to bring her home, and she would get the Glenn, and then the Fontanne, the pulmonary hypertension was not something we were expecting.  When we were told she would very likely never get surgery and maybe only live until her teens or less - we started a journey we had not anticipated when we accepted Lily's referral.

 Had we set out to adopt a child who may not live?   No Way.

Would we have originally excpted her referral if that was stated?  I honestly don't know. 

What we do know is that there was a point after we had accepted Lily's referral that it wouldn't have mattered what news we could have recieved, she was now ours no matter what.  When we recieved updated information on her saying she was delayed, couldn't sit, couldn't talk, we could have changed our minds, but for both Chris and I we knew it didn't matter.  She was our daughter, and there was nathing that was going to stop us from bringing her home. 

Does that mean it has all been eas?  No.

 There have been moments when we have said - man life would be easier if lily could talk, was out of diapers, and was well, but those are just brief moments.  Honestly we have been surprised by what we have found we can handle, and the alternative for her is unthinkable.

 Most of our momnets concerning Lily are filled with joy, love, amazement, and laughter, we feel so honored to have been chosen to be her parents and family.

This year and a half has stretched our family in many ways, we have seen the good, bad and the ugly about ourselves, but that's ok we have all grown, and are better for it. 

We could not imagine our lives without this precious girl

Lily's journey to a stronger heart - 12 (cardiac cath) pt. 2

HER HYPERTENSON HAS COME DOWN

wow just seeing those words brings on tears

We went into Monday with peace. 

As we were sitting and waiting while Lily was in the cath lab, Chris asked me

"how was I feeling about the results?"

and my response surprised me a little, because I can honestly say I was not worried, concerned or stressed - I felt such a sence of peace, and even excitment and anticipation. 

and it wasn't that I knew that the results were going to be better, I just knew that either way I didn't need to be concerned.

This is different to how I was feeling a few months ago - I had allowed myself to be consumed and overwhelmed by the what ifs,  how long does she have, and how could I bare life without her. I don't know if it was the emotions of the holidays or what but at times it was not pretty (as some of my work buds can testify too).

As I began to get a grip, focus my eyes on my heavenly father, pray, and read the bible - those things that were consuming me, were replaced by peace.  It is not my burden to carry, no matter what Lily's future is it is OK, my job is to love her, enjoy her, not miss a moment because of fear.

How much better is it when we cast our cares on Him

I had actually gone from a place of  dreading the cath to excitement about it.

After the last time, we were prepared to hear anything - but you can imagine the joy we felt as the doctor told us the results.

Her pulmonary hypertension is significantly decreased - so what does this mean

well the doctors and surgeons and other very smart people will meet to discuss Lily's options over the next few weeks.

OPTIONS - wow we have options - last time we were being told, there was nathing else to be done!!!

They will discuss surgery - the question is when and what??

Thank you again for the continued love, prayer and support you all show to our family.

As far as Lily is concerned she is just HAPPY to be home.

Lily's Journey to a Stronger Heart - 12 (cardiac cath)

We are getting ready to go CHOP for Lily's cardiac cath, which is on Jan 23rd.  We will leave here Sunday to drive up, and she will spend Monday night in the hospital for observation post cath.  We should return home Tuesday.

She is doing so well - growing, WALKING, happy, enjoying life

We were at Chop last Friday for a pre-cath visit, lots of tests - she was not happy!! The best part of the day was meeting another very special heart girl, Teresa, and her mom, Ann. You can read about Teresa here, on her momma's blog.  Teresa has severe cardiac defects and is in a similar situation to Lily in that she has pulmonary hypertension, and therefore has been unable to have the life saving surgery she needs.  We met a few weeks ago online when I was introduced to Ann's blog by my friend Jen, after a few emails back and forth we realized we were both going to be at CHOP on Jan 13th.  Teresa is an amazing little girl, full of life, so sweet and chatty - her mom is also pretty amazing, she has 9 children, 5 of which were adopted from China, all with medical needs - go check out her blog and read about the miracle they are seeing unfold in little Teresa's body.

We are going into Monday with anticipation.  We are anxious to know what is going on inside of Lily - from the outside she looks amazing - gaining weight, pink (except in the mornings when her hands and feet can look pretty blue), full of energy.  It's what's going on in her heart and lungs that we want to know - and more to the point has there been a change in her PULMONARY HYPERTENSION after a year on medication????

We have peace in our hearts - and whatever the news is, we know God is in control - as someone recently reminded me of - He loves Lily more than we do.

I will update from CHOP as soon as I can, thank you for all your continued love and prayers for Lily and us.

Here is a video of lily expolring CHOP last Friday - enjoy (it still amazes me to see her walking)