|This is a 3D scan showing Josh's Tricuspid valve... it was pretty cool.|
October 30, 2012
October 25, 2012
The last while Tim and I have been noticing a decline in Joshua's over all health, frequently Josh has told me that he's 'tired all the time' or needs 'a big sleep' or just plain old 'I tired a lot'. This past weekend I finally wrote to our cardiologist and filled her in, the plan was simple. An ECHO. So we set up an ECHO for the 31st of Halloween and would have to wait until the 14th for the results because our Doctor was away.
That was Monday morning. By Monday night Josh was so sick with a cold and cough and fever that we thought he had pneumonia, now we had already had Josh booked in for an MRI Tuesday morning, so we had babysitting already worked out for Kaleb, but come Tuesday morning the MRI lab called and reported a broken machine and I packed Josh into the car and headed to the ER instead. Once there we had a chest Xray and ECG and a battery of swab tests (none of which were pleasant for little man) but nothing was too far out of whack. He was wobbly and unsteady but was showing no serious signs of heart failure and his lungs were clear of pneumonia so were released and asked to follow up with both stroke team and his cardiologist. By the time I got him home that night his fever was back up to 104.
Now, at this time Kaleb began to cough (as one does when his brother has been hacking all over him for a number of days) but as we know Kaleb's lungs are not stellar and his coughs always turn asthmatic in no time at all. On Wednesday morning I had an already planned clinic appointment for Kaleb in the respiratory clinic to have his asthma finally diagnosed. Between the parking garage and the hospital main lobby Kaleb had thrown up four times. Tiggy (for those of you who have not had the pleasure of meeting Tiggy... it's Kaper's security 'doll'... count your blessings.) Tiggy, became utterly useless to us as he was covered in vomit, as were his clothes, and his blanket. I found him a hospital gown, got his chest xray and headed to the clinic.
Briefly let me explain the layout of this clinic.... it's in 4A... which also happens to house the cardiac clinic. So while I was waiting for Kaleb's appointment I checked in with the clinic to double check the time on the ECHO so I could finalize babysitting for the day. We chatted a little bit and finally she said, if I had known you were going to be here today I could have gotten you in today and then you could have seen the doctor on the same day. (I have to admit here that I literally jumped all over that)... I said quickly (probably too quickly) 'if you can make that happen I can get Josh here'. So she smiled and said she would ask the doctor and come find me in the asthma clinic.
When I took Kaleb into see the doctor he was pretty ill, in fact, I should have just taken him to the ER, instead this expert in childhood asthma listened to him and ordered O2 and a ventillian mask. As the nurse game him the meds she began to explain asthma to me in a way I had never heard before. She made me understand the medicines and the purpose of those medicines, the symptoms and what symptoms are saying 'ER please'... by the time she stopped talking Kaleb had perked up a little and she sent us home without the ER visit this time, but with the ER medicine that would help him if we needed it, or if he got worse.
As we were leaving the clinic I was met by the Cardiac nurse who said that she had indeed managed to get us a spot for the afternoon so I quickly called Tim's parents and asked them to switch kids with me. Within 20 minutes we were at the main doors of Sick Kids trading kids and medicines.
Josh fell asleep as soon as the ECHO started, and didn't wake up until I was 90% of the way through my chat with the doctor. This in itself was an answer to prayer since I know how scary all these words and tests can be for him.
Basically, the ECHO is showing no crazy changes in his heart, but she isn't surprised that he's showing signs of decline, ('he has a bad heart') as she reminded me when I tried to pass it off. The reality is that as he grows, as more is demanded on his body, his heart is struggling to keep up. The options are limited. However, before we do anything drastic she is going to give him a medicine which will help take the fluid load of his body and give his heart an easier go of it. We will know quickly if that is something that is working, (this is something we need to pray hard for.... that it works and buys Josh lots more time). In January the doctor will see us again, if more decline has been noted then we move to discuss something called the Fontan procedure ( a shunt to help ease the load on his tricuspid valve). It's an open chest surgery, but she thinks it may be possible to do without bypass. This fix is not something that we can change, it will permanently change the make up of his heart, (which I suppose isn't a big deal given the damage already done to his heart) but it also has side effects, swelling, possible headaches... not to mention yet another open cavity surgery and possibly another by pass. The third option, the one no one wants to even talk about yet because the risks are too high, is that we just replace the tricuspid. This is not really an option right now, it's just too risky for him.
So, this is a lot of information for one blog post... I have some sick kids. I'm exhausted and I think in part I am emotionally numb. It's why those of you who have asked for an update are getting it via a blog post. With two sick kids and one really tired Mum this is the best I can do right now.
I do have to end with saying thank you for the prayers this week. I know there have been many said for our family and I have really truly felt those prayers being answered. From the broken MRI to the last minute ECHO. Thank you so much for remembering us, for caring and taking the time to pray.
October 19, 2012
When the rain stops, and the sun comes out, that's when you find your rainbow. This week was tough, for a few reasons but today the sun came out, and in my mailbox I found a beautiful rainbow. It had every colour of joy in it, and I won't lie. I cried.
What was it? Today we received money from the Archbishops discretionary fund to get Josh into speech therapy! Even as I write this I have chills and tears, and so much relief that it can't be described!! My son will finally get what he needs! There are literally no words for how grateful I am to the Archbishop, to the diocese and the generous people who give money towards this fund.
My heart has been warmed by the kindness and love that we have recieved through this grant, a grant that just last year helped Josh attend a special school where he was able to get care that he needed. There will never be a way to say a proper thanks... to these people and to God who really did 'have it' in his hands and under his control.
This is a very appropriate time to say 'Praise God!'
October 16, 2012
Have you ever had one of those moments, when you are sitting outside, maybe the sun is warm on your shoulders, the air is crisp and clean and you close your eyes and your mind transports you to the past, to a place in time, where you were just happy, a place you loved, a memory that was precious?
Today, after dropping Josh at school I was walking home, the air was cool but the sun on my back was warm enough to ease the tension in my shoulders, the breeze brought that lovely fall scent that comes from falling leaves and a distant fire that is warming someone's home... I stopped, right on the sidewalk and I closed my eyes and immediately I was back in Austria, sitting on a wall I used to favorite. It was one of those moments in time that is both bitter sweet to look back on, sweet in that those were such fun times and bitter in that it's long since past. That home is no longer my home and on days like this, moments like the one I had on that sidewalk this morning, I miss it. I miss the mountains towering over me, always reminding me of God's majesty, the air so crisp and fresh and smelling like the countryside. No smog, no noise other than the cowbells on the cows in distant fields and the valley, spread before me covered in morning fog so thick it could be a lake made of pristine glass.
There was a glasshouse on the wall of the castle where I lived, it had a wall that we used to sit on and from there you could see the whole valley, and all the peaks in the distance. If you got up early enough, you could sit on that wall and watch the sunrise, the colours red, yellow, purple, orange and blue reflecting off the fog in the valley, the trees especially in the fall would all match the colour of the foggy sunrise and you couldn't help but see the hand of the God who created all of it. Always you could see the cows roaming the fields, the snow capping the tall mountains, and no matter what mood sent you to that wall, that view always managed to make you feel a little better and leave you feeling peaceful. I spent a lot of time on that wall in my years in Austria, a lot of prayers were whispered into the wind up there and found their way to Him. Some of the prayers were just thoughts I had and I didn't even know they were prayers I had prayed until God answered them for me years later.
It was on that wall that I made friends that I still cherish today, it was on that wall that those friendships went deeper through deep conversations, lasting fun memories and sometimes, just through tears that were shared together. That wall, that castle, those mountains, that valley, those people were a hospital for the soul, the ER department in God's kingdom that saved my life.
On days like today, when I walk down the sidewalk and am so easily transported back there because of a sound, a smell, the warmth of the sun, I am reminded that God is not just sitting in a valley in a small Austrian town waiting for me to come to the wall, he's here, in Toronto, walking home with me on the way home from dropping Josh at school. My wall has changed, my God has not.
October 11, 2012
For all the problems that we have had with Joshua's speech there are new signs of hope on the horizon. The doctor today has fought on Josh's behalf and we will now be offered an assessment through Bloorview. It is not a guarantee for therapy, but it's hope. The meeting went better than I thought; I had thought I would go in and state my case and then go home to wait for any answers they might come up with. Instead they were ready for me and spoke with speech before I even got there. This is (I feel) a direct answer to your prayers. She is also hoping that they will back date his referral so that he won't be put on the wait list now, but rather back in July when she first put the referral in. She is also willing to make an attempt to refer him to CCAC early though admittedly it's a long shot.
Last night we talked in our small group about the concept of letting go of the control and just waiting, allowing God the space and time to move and do his work. This is a lesson that I am learning well these past few months. My instinct is to fight, to work, to DO something, anything, that might help Josh. What I am learning very quickly is that God does a better job of controlling things and instead of driving myself insane with the worry, the angst and the emotional energy spent, I could just be enjoying the time we have together and trust God. I am learning that as my options run out God is showing me that He wants to do this for us, He wants me to let go of the reigns and let him help us. It's his joy to take these burdens and take up our fight.
I do not know what the assessment will mean for us, they may still deny us therapy. The reality is that in the face of this new hope I have to praise God because just this morning I didn't even have that left. Hope is a funny thing, you need it to survive and it's so easily begotten yet too often lost. So for now, I will cling to that and pray that God's sovereignty will win this battle for us.
We have also been told about a school at Bloorview, one that the doctor feels will be a good fit for Josh for his SK year. It's another thing to hope for, another thing to pray about. Where the doors were slammed shut these past few months I am starting to see some cracks in some windows and I am praying that God sees fit to help me open them.
Thank you all so much for your prayers this past 30 some odd hours. I certainly felt the peace that passes all understanding as I walked into that appointment today; and I saw the softened heart beneath the surface of our doctor. Now it's time to wait, hope, trust and believe that God is indeed in control, no matter what the outcome.
October 10, 2012
I look around me and everywhere I turn there are people with so many deep hurts, so much brokenness, so much suffering. It seems that this is a season of pain for so many people that I have come to know and love. Each situation unique, each one just as painful, just as big in the eyes of those who are walking that path. No one escapes it, but it seems these are the days when we have to gather together, hold tight to those near us and pray that the glory of our Father can be revealed in the suffering we all feel. That's the ultimate hope as a Christian isn't it? That we learn, grow, find more strength in our maker, find a deeper faith and be able to withstand the storms while praising God. Singing loudly into the rain, drowning out the thunder, being guided by the lightning that lights the dark sky. We are starting a new series in church on suffering, and I have to say it's one of the first times that I have eagerly anticipated a new series. Never have there been tougher times for so many people that commune within those walls.
Yet, even as I see the wounds, the scars and the tears of those around me; I also see a deeper, loving, growing and tighter community of people. People who strive to know God better, people who long to be known by not just the people around them, but by God himself. So while I hate the pain I see my friends walking through, while I hate the struggles we ourselves have walked through, I have to smile. God is working within the pain and it's nothing short of beautiful to see.
As I spend the day in prayer for Joshua I have also had the names and faces of friends in pain coming to me. Friends who have prayed so faithfully for us, friends who now need my prayer. What an honour it is to give back in this way. I have often wondered, late in the night, how I can possibly thank people for the way they have supported us as a family and now as I watch these same people, each with pain of their own that they now carry I am blessed to know that I can now pray on their behalf.
I was listening to a song today, yet again a song by Kutless. The song talks about suffering and how in the midst of suffering we will learn to know God in the midst of it, and that we will, in those terrible times remember who He is. We will look to his character and trust Him. That's my prayer for you, that's my prayer for my children, that is my prayer for my church and my prayer for myself.
Then one day, when we stand face to face with the King of Kings we will all hear those treasured words 'Well done, my good and faithful servant'.
This post is a call out to all of Josh's prayer warriors... We need you in the next 30hours. Let me explain.
As most of you know, In August we were denied an assessment with Bloorview for speech, on the grounds that he didn't quite fit into their category for care (he didn't have CP and his stroke was before 6 months of age). Bloorview denying him was a huge blow because it's the best, and only hope we had left for Josh to receive the therapy we need. We still do not understand the decision, and if I am honest I am still struggling with a little anger and frustration over the issue.
In recent weeks one of my readers and a woman who attends our church has taken up our fight and managed to get in touch with the director of the ABI Clinic (Acquired Brain Injury Clinic) We were told to send a new referral directly to him, and believed that Josh would finally get the care he so desperately needs.
On Friday I heard that nothing would change. We would need to go through the same doctor we had seen before and try again. I can't tell you what it feels like, to hope beyond hope, praise God that you have an answer, and then find out that it wasn't actually going to happen. It rips your guts out, deflates you, and when I am totally honest with myself it allowed me to really question God. Why all the ups and downs? Why the false hope? Why all the road blocks.
Just yesterday morning I was thinking on these things, as I prepared to call Bloorview again (I called on Friday too) to try and get a new appointment. Instead I put the phone down and prayed and decided that I would leave it alone. I would let God do what he would do. Yesterday afternoon I got a call from Bloorview, his first doctor is willing to do a follow up appointment with him, it's my chance to talk to her again about the speech issue.
This is where you come in... as Josh's prayer warriors. I am going to try talking to these people again, I am going to plead for mercy on his behalf, I am going to beg, and I am going to need them to have open hearts, soft hearts, open minds in order for us to get any kind of positive response. Please, pray for these doctors, pray for Joshua, and pray for me as I try to remain strong while fighting this incredibly long fight. Pray that this time, they accept him and give him what he needs, and pray that it's not another false lead, but actual help.
Thank you so much, each and every one of you have meant the world to us. Some of you I do not even know and yet when I reach heaven I will see you, know you, and be able to say thank you for all the prayers, work, and help that you have given to Joshua. For now, a blanket thank you will need to do. I appreciate you all so much.
Joshua's appointment is set for 1:45 pm tomorrow afternoon. (Hence the 30 hours of prayer )
October 9, 2012
I still spend hours contemplating this little marvel, how he is so independent and yet so wanting the company of others. I still catch myself staring at him in wonder and thinking... we really made this beautiful boy? I wonder if that will ever go away, the awe that these children were born of the love Tim and I feel for each other, or if one day that will fade? I hope it remains, until the end.
To celebrate Kaper's birthday I am posting some pictures of this weekend. Enjoy!
My wish for you this year is that you know you are loved more fully than you do even now. I prayer for you as a parent is that I can be the kind of mother you deserve and that I can teach and guide you into becoming the man you will one day become, while having some serious fun along the way. I love you so much Kaper, you have changed my world for the better because you are in it.
Happy birthday baby.
I love you,
October 2, 2012
I had the pleasure of showing up a little early to pick Josh up for school today and finding his class playing in the park outside the school. A perfect opportunity to watch unnoticed from the sidelines to see how he plays with others and who he plays with etc. I watched as he and a group ran back and forth, up and down, all with big smiles on their faces. Watching him play was quite fun but it was short lived as only a few minutes later the teacher rang her bell and almost all the kids ran back to the door and lined up beautifully. I say 'almost all' because Josh was not one of the group of listeners. Instead he and two other boys ran over to where the leaves were beginning to pile up and proceeded to throw them at each. While it was rather cute, I could see that the teacher was trying to get the class back into the school so I yelled out 'Josh! Listen to your teacher'. Now, the beauty of this was that he didn't see me, he stopped immediately and looked around for me but he couldn't see me but he quickly joined the line and continued to look for me.
I couldn't help but giggle about it, poor Josh must think I am omnipotent, that I have eyes everywhere, much like God. He hears my voice and obeys me but he can't find where I am hiding. I smile because I remember thinking that my mother was like that, she seemed to know all when I was a kid. I couldn't hide anything and she could hear every whisper between my sister and I.
Now, when I hear the boys plotting in 'whispers' that are louder than a mans voice, I tell them not to do whatever it is they are planning to do and they stare at me in awe. At night, when we put them to bed and we hear the sounds of the pitter patter of little feet running above our heads and tell them to get back in bed, I almost hear their thought 'how did they know we aren't in bed?'.
It has been both entertaining and a reality check from my own childhood. My mother is not God... took me long enough to figure it out eh?! :)