It’s Granny Margaret’s Birthday today and also one of Mummy’s friends Melissa had her little baby today too. Today I was full of flem! Yuck! The physiotherapists have been coming in regularly to help me help me cough it up. Mummy and Daddy help too they are like Quick Draw Magraw with the suction pipe!
Daddy is going to spend an extra night at the hospital with me tonight so went home for a rest, Mummy sat with me and sewed (of course) and then attended to me when I was coughing. She lifted me onto her knee and settled me down on a comfy pillow and it was very nice so I had a lovely sleep.
Dr Burns visited today and explained that’s my heart scan was good and that I had a normal echo, so my heart is working ok its perhaps just working more slowly. Because Mummy and Daddy want to understand ways to make me more comfortable Mummy talked to him about having a test to check my adrenal glands.
She had asked before Christmas because a lot of children with my disease suffer from adrenal insufficiency but I was so poorly they decided against it. Adrenal insufficiency is a condition in which the adrenal glands, located above the kidneys, do not produce adequate amounts of steroid hormones (chemicals produced by the body that regulate organ function), primarily cortisol, but may also include impaired aldosterone production (a mineralcorticoid) which regulates sodium, potassium and water retention. Adrenal insufficiency can result in severe abdominal pains, diarrhoea, vomiting, muscle weakness, so I will be having a test next week in case this is the reason I struggle with my tummy. (Karen ;-) )
I met someone new today, Mummy’s friend called Rachel came to see me, it’s the third time she’s tried but I kept misbehaving every time she was due but she said she was determined to meet me. I got to have a lovely cuddle, she was nice to sit with and she wasn’t at all scared of me! And wow! She brought lots of lovely purple clothes for me to wear; now I’m spoilt for choice!! One of the reasons Daddy liked Rachel coming is that Rachel likes Pizza nearly as much as he does, and Mummy treated everyone to a Dominoes! (Other Pizza houses are available)
i do love this little girl.so courageous and beautifull.everytime im reading the blog i feel for her and think its sooo unfair.
ReplyDeletelittle miss ellie u are such a georgeous ....thinking about you every daz and praying for u.cant help it but i do think that if u would be healthly ur parents would give you such a beautifull life
I have just come across Ellie's blog via a lovely friend of mine. What she is going through is awful....but what a little beauty of a girl! I'm humbled by what I saw tonight. She's a super-special little girl and it is truly wonderful to see the love and patience that surrounds her. Much love to you all. xxxxxxxxx
ReplyDelete