Shriek shriek shriek - I could hear Matt was really upset. I had left him upstairs playing in my room whilst I went down to pack things for our next outing. I knew immediatelly that this was a something-is-really-wrong-shriek, as opposed to the i'm-frustrated-because-i-can't-make-this-toy-work-shriek or the i-can't-quite-reach-it-shriek. I dashed upstairs.
There he was standing in my room, sobbing. My mind was racing - what had happened? Whilst calming and cuddling him I looked around the room to see if I could see the cause of his pain. Everything looked safe and nothing out of place.
As he calmed a bit, I asked him "Matt, can you show mom what made you sore?" I wasn't sure if he understood the question, and less certain if he would find a way to answer. Without hesitating Matt showed me the sign for CAT. I was astounded. Then I asked him "Matt can you show mom where you are sore?" And he lifted up his hand, and there on it were fresh whelts and scratches clearly the result of an angry cat.
I cannot describe the joy that I felt. Obviously not happy about the cat's actions, but that my little boy had so clearly communicated to me about his pain. I have long been anxious about the fact that he is not able to tell me when he is sore or where. Something that moms really need to know.
I have had a really tough week (a story for a future blog entry) - and this moment was such a highlight, a real gift! Well done Matt. Now I need to have a chat with the cat about scratching...
Our son Matt has brought such joy to us and through him we have learnt so many things about ourselves and life. He has a rare genetic syndrome called Rubinstein-Taybi Syndrome. This blog is where we process the things we have learnt, where we share our challenges and pains, and where we celebrate small victories.
Monday, November 16, 2009
Thursday, November 12, 2009
And another RTSweetie in South Africa
To meet little Jodie click here. She too is in need of prayers at the moment!
Wednesday, November 11, 2009
A growing RTS family in South Africa
I have just come back from a lovely morning with two RTS sisters - Nicky and her little cutie Samuel (check out her blog if you haven't already) and the newest to our RTS family Tamsin - her daughter Payton is still in hospital and is not yet two weeks old. Payton has a problem with her heart and they are considering surgery.
We met at Tamsin's family home just before she was heading off to the hospital for the day. I love these ladies like they are my own sisters, even though we hardly know each other. Matt was a little subdued during our time with them, but I know he was able to show them that their future is not all doom and gloom, rather a hopeful place.
Please pray for God's strength for Tamsin and His protection and healing for Payton.
We met at Tamsin's family home just before she was heading off to the hospital for the day. I love these ladies like they are my own sisters, even though we hardly know each other. Matt was a little subdued during our time with them, but I know he was able to show them that their future is not all doom and gloom, rather a hopeful place.
Please pray for God's strength for Tamsin and His protection and healing for Payton.
Saturday, November 7, 2009
Before sunrise
On Friday Matt was booked for a MRI scan to check to see if he had a tethered chord. We were unsure how it would work as Matt would be required to lie very still for a long time in the midst of loud noise. Sedation was an option, but usually only really works with young babies - and then the only alternative would to get in an anethetist.
Lloyd had an idea on Thrusday night that if we sedate Matt when he was really tired - then he might just sleep through the MRI. However, the appointment was for 8am - not a time when Matt is usually tired. So my amazing husband woke up at 4 am, and woke Matt too (without waking me - bless him) and entertained him for the early ours of the morning. At 7.30am we gave him the sedation meds at home and drove the the hospital. By the time we got to the MRI room Matt had just fallen asleep - and he stayed that way for the duration of the whole, long, NOISY MRI scan. No anethetist required! Lloyd's sleepiness was all worth it. Poor Matt was very drowsy and almost drunk-like after the scan. But after a good two hour sleep he woke up mostly recovered. We still await the results of the scan.
Lloyd had an idea on Thrusday night that if we sedate Matt when he was really tired - then he might just sleep through the MRI. However, the appointment was for 8am - not a time when Matt is usually tired. So my amazing husband woke up at 4 am, and woke Matt too (without waking me - bless him) and entertained him for the early ours of the morning. At 7.30am we gave him the sedation meds at home and drove the the hospital. By the time we got to the MRI room Matt had just fallen asleep - and he stayed that way for the duration of the whole, long, NOISY MRI scan. No anethetist required! Lloyd's sleepiness was all worth it. Poor Matt was very drowsy and almost drunk-like after the scan. But after a good two hour sleep he woke up mostly recovered. We still await the results of the scan.
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