Dreams Come True

For the longest time I have not dared to dream. Not dared to let my mind wander to a place in the future, nor let my heart follow it there.

Congenital Heart Disease does that to a family.

Most families have dreams for their kids; to see them grow up into young men and women, fall in love, get married and have a family of their own. My dreams have not lingered there, They have visited occasionally. Kind of like popping your head around the corner of a door and then retreating before anyone notices. That has been the extent of my dreams for our families long term future. Because as a heart Mum I have learned to live in the moment, relishing each day. Not taking anything for granted, making big deals out of every milestone because they are so much more precious to me, knowing that God enabled us to reach them. In essence we live a life of gratitude, not making plans anymore than about a week in advance because so often those plans fall in a heap.

Being on a church roster is scary for me, working is scary for me, committing to being somewhere weekly is scary to me. Because so often I have to let others down to be with my family when they need me. And often they have due to illness.

But lately I have been stretching my tired wings. Daring to venture into greater commitments  with work, church and friends. I have been letting myself dream a little more about our marriage and  future, about my boy's futures and speaking words of great promise over all of us. Through God enabling I have begun to see through the haze of CHD and see increasing glimpses of God's promise of life in abundance for our family.

For so long I have been holding these precious dreams in my hand and protecting them like a costly jewel.

Now I see they are alive and ready to take flight, like a dove being released to find it's way home; God's promises to not return to Him unfulfilled.

Picture Source

It Hurts

Sam has always had sensitive skin. His hearing has always been more sensitive and his emotions run deep, both good and bad. Since recommencing Kindy I have watched him grown in confidence, regaining some of what was lost during the last surgery in March. It is wonderful to watch him bloom, yet hand in hand with the bloom comes fragility and vulnerability.

He was accidentally pushed over at Kindy yesterday grazing both of his knees. He felt it deeply and the whole Kindy knew about it. They called me, not concerned about his knees but his reaction to the accident. You see his reaction to pain and fear is so out of character for Sam. The once happy little chappy with the big vocabulary and infectious giggle, just screams and cries and will not be consoled. He will not let anyone touch his wounds or try to distract him so they can. So they called me, on the way home from getting groceries and I had to make a choice. To go and comfort him...or to leave him in their care. Every motherly part of me screamed to turn the car around go to him. The other part of me, wants him to grow and realise that he can do it on his own, and that he needs to. So pushing down the caring part, I resolved to let them deal with it and drove in the opposite direction. Ten minutes later I called and he had settled somewhat, though now they had somehow convinced Sam to apply his own band aids, three of them. Oh hell! Yes, that's right, hell. It will be when they need to come off.

When I arrived to collect him in the afternoon he was still waking from a sleep. He was unable to stand, due to the stiffness of the grazes and bruising and I had to carry him to the car. They told me that he had not been himself for the rest of the day. That he had seemed tired and staring off into space. They do no understand how trauma saps his energy. For the last 24 hours he has been walking over like a hunched old Grandpa. Part of me worries that he has broken something but he would not be able to walk at all then right?

This morning he needed to take off the band aids. An hour later through much wailing, negotiation and persistence he removed two and I the other. It was not the best start to the day and Jack was almost late for school. And now he sleeps while I write this. Because of the exertion and drama over the last 24 hours we are both exhausted. Him from struggling to deal with it all and me from playing good cop, bad cop, trying to encourage him into moving, without me having to carry him.

Most other kids have grazed knees occasionally. It hurts, and they react but not in this way. I struggle with dealing with it all because besides my husband there are few who understand the drama, physical and psychological implications of it all.

My heart is aching today. I think I need a holiday.

My Cup Overflows With Blessings

We have been in our new home at Highfields for almost three months now, though at times it feels much longer. It's four months since Sam had his Fontan heart surgery and to look at him now, you would never guess that his heart was so altered.
Don has settled back into his work with the Blackhawk team like a duck in water (pun intended for those who know Don's association with ducks). A few short weeks after arriving in our new home, Boeing advised the Blackhawk team that the Blackhawks would be winding down at Oakey and that the team was advised to be re-allocated or find new employment by Christmas. Well, that tested our resolve somewhat. However, we believed that God brought us back here and so we prayed and waited. As it happens we found out last week that Don will begin training to work on the Kiowa Jet Ranger helicopters and therefore is well equipped to transition to them when Blackhawk winds down. (Insert giant sigh of relief and shout of adulation to God here).

My Avon business was slow to get going in the first campaign but with prayer and persistence I have seen a massive improvement over the last month and I am just so encouraged and thankful to have a job, where I can be with my boys and help out at school. The book 'How Prayer Impacts Lives' was also released this last month, to which I contributed so that was wonderful to see come to fruition.
In between all of this we have all had the flu in the last month, meant the children basically raised themselves for a week or so there.

Jack has settled in better now to his school and I have seen big improvements in his work. The fact that he wants to read now, just does my heart no end of good. He and Sam look forward to reuniting in the afternoons after school and continuing their superhero games.

Sam is recommencing Kindy on Monday for a day a week, for the first time since his surgery. He is very excited. He is also beginning swimming classes on Tuesday. To see that he has enough energy now to try and swim is just so wonderful. Sam has also begun to see a psychologist at the Toowoomba Hospital once a week. I knew he needed help to overcome his fear of needles, blood tests and ECGs but I was still in two minds about psychologists. There is too much stigma surrounding that profession. So tucking the stigma away in my handbag, we attended the sessions and will continue to do so over a long period of time. His doctor is excellent and it is a play based approach, which at this stage he seems to be enjoying. I am sure with age, God's help and medical help, he will learn to master the fear that so consumes him surrounding these procedures.

 

For now, I am so thankful to all be well and nearing the end of the Winter months. The change of season is in the air and the ferocious winds today seem to be driving away the remnants of the chilly Winter air. We have a real sense of peace in this place, unlike we have had for some time.

 

The psalm that follows is often recited at funerals as it seems to bring comfort to those in times of grieving and gives hope. For me, now in this time, God is whispering into my ear to remind me of his presence in our life, the one we are living now. They are more that words of promise for another time, these are words that speak of our life now. These words come to mind and resonate within my soul today. I see the words below reflected in every area of our life and that is what brings me peace.

The Lord is my shepherd;
    I have all that I need.
 He lets me rest in green meadows;
    he leads me beside peaceful streams.
   He renews my strength.
He guides me along right paths,
    bringing honour to his name.
 Even when I walk
    through the darkest valley,
I will not be afraid,
    for you are close beside me.
Your rod and your staff
    protect and comfort me.
 You prepare a feast for me
    in the presence of my enemies.
You honour me by anointing my head with oil.
    My cup overflows with blessings.
 Surely your goodness and unfailing love will pursue me
    all the days of my life,
and I will live in the house of the Lord
    forever.

Psalm 23

 

 

Sam's Cardiac Review-Three Months Post Fontan

Yesterday we travelled to the Mater Hospital in Brisbane for Sam's cardiac review. We were relatively relaxed in the lead up, as Sam has been so well and has looked so good post surgery. Sam on the other hand, was not so relaxed about his check up anymore after his surgery in March. Hospitals are all too fresh in his mind.
The first part of the review was gong well until they had to the ECG and that is when he just lost the plot. There was no way anyone was putting anything sticky on him, as anything that is sticky must come off.  The ECG stickers have a really stretchy kind of adhesive on them and they are uncomfortable to take off but definitely not painful. However Sam's memories of tapes, tegaderm and dressings after surgery have made him very fearful, and his anxiety goes through the roof.  He will NOT listen to any reason when he is in that place, and that is where he got to yesterday. If he is upset like this and anyone tries to negotiate or bribe or suggest anything he will not listen at all.
So after that great upset we then had to try and get a good blood pressure reading and oxygen saturation. After some time, they were all good, his sats still sitting on 98%.
His clinical check up with Dr Gooi went smoothly and then on to the echo. Sam was very good for the echo and stayed very still for a long time as they also had to check his lungs for fluid in addition to all of his heart.
I became very concerned when the sonographer went very quiet and spent quite some time searching for something.  When he excused himself to go and get Alex (Sam's cardiologist) I prayed over and over that all would be well. When they returned together I found out that the sonographer was unable to locate Sam's pulmonary arteries, either of them! Of course I know Sam has pulmonary arteries and they are functioning well otherwise he would not look so good. Talk about knowing how to completely freak out a heart mum! They should be schooled to never go silent and then leave the room without offering explanation.
The result of the echo was that Sam's lungs are completely clear, meaning that he has now ceased to need Lasix. Wooohooo!
His heart function is great. The right ventricle is pumping nicely, the valve still only has minimal regurgitation (no change), and his aortic arch is in great shape. The pulmonary arteries are of good size and Aspirin and Enalapril are the only medications he will need to remain on. Our next review will be in 6 months and soon after that we should go to only having one a year appointments. How exciting will that be!
We have brought home some of the ECG sticker to play with at home and try and desensitise over time his aversion to that testing. We are also going to try and do some local occupational therapy to help with his fear and anxiety in regard to needles, blood tests and ECG.
I thank God for Sam's continued good health and look forward to the next days, months, and years that we believe will be the best of God's gifts yet.

Sam was happy to go back to the hospital as long as we didn't have to stay and we didn't have to visit the ward.

He was trying so hard to be brave in this photo. His croc was there to help protect him. Sam's awareness level and anxiety is very high after his surgery.

The echo took a long time and in the end he nearly fell asleep, but refused when I told him he could. He was keeping both eyes open.

Measuring Wealth

When we moved to Highfields we know God was bringing us home, for a time of replenishing. He spoke to us about moving back home and restoring what had been lost to us. We have been here a month now and we see his providence in so many ways. Yes, in tangible ways by paying for our relocation, providing Don with a great job, opening up a whole new world for Avon for me, placing Jack in a school with a dynamic and focused teacher, introducing us to a new church family, and seeing Sam settle and regain his confidence following his surgery only a few short months ago. Honestly, I could go on and on, but you get the picture. This scripture has been pivotal to me in the past two weeks. It is in complete retrospect to what the world teaches us.

The result of humility and the fear of the Lord is wealth, honour and life.(Prov. 22:4)

When I wake in the morning, the words resound through my mind and settle gently into my heart like a renewing gift, a gentle reminder each day that our life here is God's gift and it is good.

With what we have endured in recent years in regard to our travels with MAF, moving from home to home, town to town, state to state, Sam's surgery, and Don's work; this promise from God is like a refreshing drink of water to us. It is reviving our parched souls after a long journey.  Everything is beautiful to us right now; being closer to family, the weather, our new home, new friends, because we know we are in the place where God's blessing resides. And so just as our Pittsworth home was called 'God's Rest', this place is 'God's Blessing'.

We have not despised any part of our journey in fact we have relished in the people we have met and the places we have lived. It was not a fickle journey but one of obedience and love. 

We travel to Brisbane on Friday for Sam's heart review with his cardiologist. Please pray with us for a safe trip and an outstanding outcome for Sam. That his heart shall be strong and endure for the longest time.

Rugged up and happy for Jack's first athletics day. He missed last year's due to us moving around.

Jack came 2nd in his sprint, though they only give participation ribbons in the lower years.

Sam joins in hopscotch at Jack's school.

Jack running in his relay where he caught up where his team was lagging.

The new book I contributed to is now released and I received my author copies from the UK.

Sam is just growing up so much and the boys have only grown closer in our travels.

We are rediscovering gardening. Oh, how I have missed my garden.

The Game Changer

Sam turned to me, 'I fish (wish) I could go play tiggy with those kids.'
He stared longingly at Jack running full speed with the other year one kids before school. Like a bunch of wild lorikeets the kids were tearing down the wooden ramps hanging from the bars, sprinting across the school yard in the icy morning air.

'I know honey, but they are really rough and a bit too fast for you. Maybe you can play with Jack at home later.' My heart ached for him, because of the desire he had to play. I worried for his safety. Inside I agonised about him being hurt or pushed over, treated unfairly because he can not run so fast. Kids can be ruthless when being competitive. We are new to the school the kids don't know Sam, don't know about his heart. I began to think forward to him starting Prep school next year and how he would go with all of the other kids. As my heart felt his sorrow, I suddenly realised he no longer stood beside me.
Sam was sprinting (in his own special way) down the ramp to join in the fray and I stood rooted to the spot forcing myself not to call out. He had made the decision and every part of the Mummy in me wanted to stop him. In the raucous din  I heard Holy Spirit whisper 'No, let him go'.

In the next few minutes I witnessed the most amazing transformation. The whole group of 10 or more year ones welcomed him, and let him chase them.  Then they completely changed their game so that Sam could join in. They would draw close to him and then dart away as he roared at them like a T-Rex.  And I watched him run and laugh and never stop until the bell rang for class to start. Instead of being the outsider, the one struggling to keep up, he became the centre of their game. His own little personality and his determination to play changed the game for good.

We need to do that to you know. Though we are afraid, we need to run on in reaching for what God has planned out for us. And part of that is never being the same again, seeing the game changed because we dared to trust for bigger things.

Always learning, always growing each day in every way.

Our Last Week in Longreach

Well, the week is upon us, once again. This Thursday we leave for our new home in Highfields Toowoomba. The truck is coming on Tuesday to pack us up, with all of our household goods leaving on Wednesday.  Our family is going to camp in our house, with our sleeping bags and esky. We are saying goodbyes, enjoying our last times with our new friends, who we hope will continue to be old friends.  We are not done in Longreach, there is just so much to see and do in this place in the surrounding areas.  We know we will be back to visit someday in the future.

There is much to look forward to in the coming weeks. Our trip to Toowoomba will be via Bundaberg, and The Sunshine Coast, to visit with both of our families. Don will continue on to Toowoomba and leave the rest of us at the coast for a few days. We move into our new home on the 24th May. Don will be staying in a motel in Toowoomba for the first week of work, provided by Boeing.  We truly are blessed by all of the help they have given us in relocating. We will be visiting the school with Jack on the 23rd and he will commence at Highfields State School on the 27th May. The local Avon Sales Manager is excited to have me moving to the area, and will recommence business once we settle in a little.

Sam is looking forward to going back to Kindy, as he has now had a good break after his surgery and is doing better than he ever has before. Both the boys have a cold at the moment, but I have noticed a marked difference in Sam's ability to fend off the sickness, and his recovery is now about the same time as Jack. Once Sam begins Kindy I will look at doing some teaching supply work once a week in the local area.

We are really looking forward to seeing old friends and new ones too.

When God spoke to us in Melbourne about bringing us back home and pouring out his blessing, we would never had imagined it would look like this. This last year we have waited and are just so thankful for all he has done.

Jack enjoyed celebrating his 7th birthday this week.

The lounge has been sold and camping in our house is fun....for now.

Time to Celebrate Jack

Tomorrow my son Jack will be seven. I am so honoured to have him as my son. While Sam is often the centre of attention both good and bad, for reasons outside of his control, Jack is his constant companion. He is never bitter, always full of love, compassion and feels deeply. He is observant and kind and likes to laugh. He thinks deeply and reasons with the thoughts in his head and the feelings in his heart. He is tall and strong and likes to move fast, taking risks and keeps striving even after failure. His room is often declared disaster zone, as he must have everything where he can see it and his collections fill the shelves of his room. Rocks, bones, models, shells, bugs, coins and stamps all find their pride of place in Jack's domain. One minute he is joking about farting in the bath and the next he is telling me all about his aspirations for the future and what Jesus has told him lately.
It has hurt me often lately that people look past Jack to see Sam. I know it hurts him at times also, yet not once have I seen him angry because of it. And so we have always made a conscious effort to lavish love upon them both equally, because I can honestly tell you that they both make my heart sing immeasurably. Both of my boys have a zest for life that is insatiable, finding joy on the darkest of days.
And so tomorrow is for Jack, to celebrate all that he is and all he is growing to be. Happy birthday my little mate. A little mate who now reaches my chest in height and wears my socks. He is my first born son and holds a very special place in my heart.

Jack, 5 months old.



Jack, 1 year old, riding Bruno.

Jack, 2 year old, when Sam was born.

Jack at 3 years old, growing his own vegetables.

Jack at 4 years old, with Tweety.

Jack at 5 years old with his best mate Sam.

Jack at 6 years old. He loves lizards.

Jack, almost 7, with so much love to offer the world all wrapped up in the whirlwind that he is.

I can run!

I am just bursting with mummy pride and joy this morning. Jack's school is practising for cross country, so this morning Jack, Sam and I all participated in the practice. Jack was all enthusiasm as he joined in with his school. Sam did all of the warm ups, running across the oval with the PE teacher, stretching, bouncing with so much enthusiasm, I thought he was going to jump out of his skin. Then we started to run (me walking beside Sam quickly) as he ran the first side of the oval and then walked, puffing and telling me his legs were hard. So we kept walking and breathing. He walked and ran alternately for a whole lap and a half!

'Just keep walking mate. You can do it. your legs are not used to this exercise and they just need to practise and get stronger. Soon they will be strong and not hurt so much. One days your legs will be strong and take you far.'

After 15 minutes of persisting, and finishing with the other kids.

'I did it Mum! I did it! You were right Mum, when I walk the puff goes away. My legs feel good! After my heart surgery, I can run.'

 

My cup runs over.

 

You prepare a feast for me
in the presence of my enemies.
You honor me by anointing my head with oil.
My cup overflows with blessings. (Psalm 23:5)

Living Longreach Style

Sam fossicks for rocks in the dry creek bed.

Sam's x-ray was clear. After it being sent through to his cardiologost we were able to drop back Sam's Lasix to only one dose a day, which means no more wet beds at night time.  We are all happy about this, none more so than Sam. It is so amazing to watch him go and go and go. This weekend we went rock collecting and instead of him being worn out and needing to rest, because of being out of breath, we had to rest because his legs were sore from walking and standing.  This is new to us, as he was always tired the other way first  Now he just needs to build up strength in his legs.

Jack helps open the gates on our adventures.

We are making the most of our last few weekends in Longreach, enjoying the mild 30C days and doing things that Toowoomba won't offer so freely. We have so much to be thankful for.



Our move to Toowoomba is falling into place like clockwork. Now we just have to find the right place to live. We have applied a few times and missed out. The right place must be coming,  we just need to be patient. We have trusted in God for things much more important than this.

ANZAC DAY-One month post Fontan

Today we remember the men and women who so valiantly have served and are serving our country in the military, protecting all that we have and hold dear and we are also celebrating that it has been a month to the day since Sam had his Fontan surgery.

We savoured the ANZAC parade in Longreach this morning, our first and last in this outback town.  A town that is proud of it's heritage and the resilience of it's people. The harsh climate and isolation build a strong sense of community.  Today Jack marched with his school in the parade, while the rest of us cheered them on.  Sam cheering the loudest of all, the excitement was intense for him. We could hear the comments of others remarking at his enthusiasm.

 And then we all gathered in Edkins Park for the memorial service, the air filled with a cacophony of Corella's screeching, happy jacks chattering, dogs baking and the road trains on the highway crawling past. Somehow we heard most of the words, prayers, songs and sentiment. It will be a day we remember for a long time to come.

Jack is in the centre, waving with his hand over his face.

And now as the Summer weather has breathed it's last, the vast strong winds of Winter have arrived

today, bringing with it the sense of a change in season. And our season here in Longreach is drawing to a close.  Our house here in Longreach has been re-let, meaning we are now free to move as a family.  At this stage we are looking at leaving Longreach on the 17th May.  We are in the midst of finding a home to rent in Longreach and have many people helping us with that. 

Sam has had his x-ray and we are waiting to hear the results to make sure there are no fluid problems near his lungs from after his surgery.  We are looking forward to stopping the Lasix for him when the doctor's say. Night times are no longer dry for Sam and he finds this quite upsetting. He does not like mess and is a big boy who has not worn nappies for years. Otherwise he is doing very well.  His little hands and feet are warm and pink.  His lips are pink most of the time and he is now walking/running further than he ever has before.

I am so thankful that we live in Australia, where health care is excellent and much is provided for us.  I know that so many have fought and died to make this country what it is today. When I saw Sam waving today and cheering at the parade, it brought tears to my eyes to know that because of the brave ones who have fallen, Sam was given the freedom to live. God bless our service men and women.

A Bittersweet Change

We are home in Longreach!  How wonderful it was to be reunited in our family home again after such a long time away.

Sam is still powering away in his recovery.  His scars are healing really well and he does not seem to have any side affects in regard to fluid retention. He will have an x-ray in Longreach in the next week to rule this out.

I have been offline mostly for the last week, due to some big news that has come very suddenly, news I was unable to share until today.

On Monday Don received an offer of work back at Boeing at Oakey, an offer which we have accepted.  They were very keen to have him back on the team and so we are relocating back to the Toowoomba area.  At first we were hesitant, we love our community in Longreach, the church, the school, the Kindy and everyone in them. However the lure of being closer to family and old friends, medical care for Sam and the superb offer from Boeing, brought us to pray, consider and accept the offer. Boeing is even paying for the relocation of all of our belongings and transport costs as well as providing accommodation for up to a month for Don, if he needs to come down before us.

Don begins his new position with the Blackhawk team at Oakey on the 20th May, meaning we have a month left here at Longreach.  In that time we need to find a replacement to fulfil the lease we have here on the house in Longreach.  Please pray that a suitable tenant is found so we may move together as a family. If not, I will have to remain here with the boys until a tenant is found.

I am looking for someone to take over my Avon business here in Longreach if anyone is keen, let me know.  I have about 40 customers who look forward to receiving the service.

Obviously we have been caught off guard with this move.  We were looking to stay in Longreach for quite some time, but we cannot ignore the doors that have been opened for us in the last week.  It is hard to leave Don's work here and all of the friends who have been so kind and supportive to us, especially over the last month during Sam's surgery.  To say no would be foolish.  We have literally seen God open his hand this week and pour out blessing over our family, in such a refreshing contrast to what we have just endured. 

So we hope that you will celebrate with us, though the news be bittersweet. We are excited and look forward to all that God has in store for us in the future to come.

Given the All Clear

We presented for Sam's x-ray this morning at 9am and were taken straight in to have it.  Five minutes later we were back in the ward to get the results and because the doctors were on their rounds we saw them right at that moment.  The x-ray was great with no complications.  Sam has the suture removed from his final drain wound and we were on our way.  Good-bye Mater Hospital! Dr Anderson one of Sam's doctors is just amazed at his recovery.

'He is just remarkable isn't he?', he grinned as Sam smiled and laughed and ran down the hall to see him.  I think what really stumps everyone the most is just the abundance of Sam's joy and his complete inability to hold a grudge even five minutes after they have to hurt him in some way.

We are now at the Sunshine Coast with my family, spending quality time with Granny and Grandad for a week or so before we head back to Longreach. Sam will have an x-ray back in Longreach in a fortnight's time and then we will not need to head back to Brisbane for review until the 28th June.

In the next week, I need to come to term with fact that we are on the other side of this surgery that Sam loves to eat, and what our life will look like now that this weight has been lifted. It has not yet been three weeks since his surgery and I still can't wipe the smile from my face.

To say that we have felt so loved by you all would be a complete understatement.  We have received words of love, cards and gifts from the world over.  It is going to take me a year to thank you all personally but I have kept all of the envelopes with return addresses to do just that.

I think Sam summed it up all quite well in his prayers last night.

'Fank you Desus, for making me better. Fank you for my family and my good fwiends. I wove you.'

Time to Celebrate

Today we have rejoiced in a day of relaxation and celebration.  Sam's post surgery dream to visit the museum was fulfilled today with enthusiasm overflowing. We literally had to run to keep up with him at times.  And he has not complained of pain once since leaving the hospital. Today we have enjoyed long walks, taken in the sights, hunted for water dragons, indulged in ice-cream  and once again enjoyed our comfy beds. Sam's first words this morning on waking were, 'I yove deese beds they are so comforble.' There have been no tears today, no pain; only giggles and joy and cuddles both received and given. Truly today has been a celebration of all that is good in life.



Breakfast at our motel was delight to us all this morning. The boys loved being able to choose from such a huge selection.

I will never in my life forget the expression on Sam's face when he saw this dinosuar skeleton, not the roaring noise he made to accompany it. It was priceless after all he has been through.

 

To fierce dinosaurs!

 

Off to the hospital once again in the morning for an x-ray the final OK to be able to head home. I have to believe that all is well, after I have seen Sam in great health today.

Day 15-Post Fontan- Victory!

Yesterday we had to make a decision regarding our stay at Ronald McDonald house, as our time booked there had come to an end.  In faith we booked a night at a motel and in the morning Don and Jack packed up the car. We had hope in our hearts that today would be the day we left hospital, especially after seeing God move so mightily on our behalf yesterday.

As the doctors did their rounds they were guarded and suggested that we should spend a little longer in hospital, but if the x-ray was good and there was minimal fluid retained in his right pleural cavity, Sam may come back to accommodation. At 11am we finally were sent down to x-ray. We went knowing that God had it all in hand, no matter the outcome. Half and hour later the head nurse came to see us to tell us that she was sending us out. Sam's x-ray was completely clear!  In fact they needed our bed space and were very happy for us to be discharged!

Do you remember when Sam's drains continued to drain and I felt moved that they should review it?  They did that without me even getting to ask and now this -a total lack of any fluid build up in 24 hours after they rmoved the drain.  Sam has left hospital on Aspirin, Enalapril and Lasix for the time being. The first two medications are long term,  with the Lasix to be eventually stopped. Sam will go back to the hospital on Thursday for a follow up x-ray and then we will be free to go home.

We also had visitors as we were checking out today. A beautiful family whose lives have been touched by HLHS, and they are all the way from Denmark.  During our hospital stay I have been blessed by meeting in person, two amazing friends from Facebook whom we had never met before.  Thank you for taking the time to visit Ally and Tom, even with your jet lag. To look upon your faces after following your journey was so special to me. Bless your beautiful family.

So here we are tonight all together, in a beautiful motel, enjoying relaxing and being a family again.  We spent the afternoon sleeping in our comfy beds and snuggling up together. It feels like a dream to me, a dream that I never want to wake up from.  To know that we are on the 'other side' of the Fontan surgery, will take some time to sink in I believe. But I can tell you that already we are seeing the improvements in Sam's well being. His hands and feet are warm and pink, and tonight I watched him eat and entire bowl of Spaghetti Napoletana.  An entire bowl! With every slurpy mouthful I sent God thanks for the joy that it brings me to see him enjoy food.

 

Thank you God for this day of victory.