Good news ...Blessed relief

As I mentioned a few months ago both S and J have a few medical problems. Sam has been definitely diagnosed with an inherited genetic disorder. (4th generation we know of - but it is also a mutation in half of other people affected ).I have it too. J they are unsure.

S & J have regular checkups at the Children's hospital for their eyes and with a Paediatric Neurologist.

J has only a few Café-au-lait spots ( birthmarks) but he was also being followed up too.Watched.

I noticed by attending the Early childhood clinic (along with the Nurse) that J's head circumference had crossed percentiles from 50% - almost 100% over a period of six months. He had a large head but not off the charts - but his weight and height were in about 50%. His fontanel was still quite large too. It was odd .Previously both S & J head circumference was exactly the same for first 6 months almost.

At the time the Clinic nurse rang our Paediatrician and made sure she knew. Then J was sent for a head ultrasound. It was all okay but due to his age and even though his fontanel was large - they said the findings were limited. Though I was relieved I still worried. It was 4-5 months ago.

Four weeks ago we had an appointment with Paediatric Neurologist. He checked them both but had a concern about J's head size - it was slightly off the growth chart. Since tumours are a complication of the genetic disorder (as well as large head being a sign too) he told me he would like J to have a MRI of his head/brain.

The Paed Neurologist repeated he wasn't particularly worried as J had no other signs but "just to be sure"...

Then he said it might take 6 months to be done because it had to be done under a general anaesthetic -requiring hospital admission for the day [GA - only so child stays still and it is less distressing for them]. He said it wasn't urgent - basically it was a wait your turn at our very busy, specialised , Children's hospital.

He booked it all into the computer. They were to ring me.So I was a little worried about the waiting...

A few days later the hospital rang and said J was booked in next week -Thursday 20th March (day before Good Friday).

I was suddenly very worried because it was less than 2 weeks not 6 months - I wondered if Paed Neurologist had changed his mind and made the booking urgent.

I was very distressed. I couldn't talk about it or blog about it. I had to keep busy. I was also concerned about the anaesthetic.

We went and J had the MRI. The staff were lovely.The Anaesthetist explained it thoroughly before hand - the general anaesthetic.

I went in with J - cuddled him in my arms as they put the mask & gas near , then over his face, his got a little upset then suddenly was unconscious. I then placed him on the gurney and had to leave.

Despite being a paediatric nurse I had never seen a child go under - though I had experienced it myself. I was a little teary but couldn't cry. I was so worried. I was praying for him to be kept safe.

It seemed like ages before they came to get me after it was completed. My mother was there too and was looking after S. J was very drowsy at first and finally woke up after much prodding and feet tickling. He cried, sat up and reached for me. I cuddled him so tightly.So thankful. Then I was able to breastfeed him and he was happy.They can't tell you any results though.

(Dr Colourfool - who visits children to cheer them and blow bubbles)

I took J & S to Children's play area afterwards - because they love it and it is very calming.


The Paed Neurologist said before to call him in week and remind him to check the computer.It was the hardest week - I spent so much time looking at J and praying.

At night I cuddled him next to me, kissed his head, stroked his soft hair and breathed him in. The thoughts in my head were pounding and ugly. Then he was sick with high temperatures and I was more worried. The results of something on his blood test - stuff I shouldn't Google.

Friday I called - only to have to leave messages on voice mail - I left two. I had psyched myself up to call ... and it was a huge thing.

Monday - all day I waited ... every time the phone rang I jumped.My heart grabbed in my chest, beating wildly till I knew it was or wasn't the Dr. I can't describe how I was feeling ...the thoughts in my head.

Tuesday - same thing but I went to Early Childhood Nurse , unfortunately our regular nurse wasn't there, for something to do. I took the Brothers to playgroup ... but there was no message when I got home.

About 4pm I was due to go out - my husband was home to look after the Brothers. He took the call ... at first he thought it was telemarkers and said I wasn't there ... I was hanging on.

Then he got off the phone and told me - smiling it was all clear. I couldn't even really tell him how worried I had been.

I am just so relieved my baby is okay.
♥

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