Cant believe we are 2 weeks into the New Year already! We had a wonderful Christmas and Lillyrose really enjoyed getting spoilt with all her new toys and all the cuddles she got over the festive season from all her Uncles and Aunties and cousins. Thankfully as well, we avoided getting all the bad flues that have been going around recently and I hope it stays that way. Hate the thoughts of Lillyrose picking something up and holding her back from all the progress she has made.
At the moment my husband and myself are busy looking about for a site to build a new house. At the moment we live in a two story semi-detached in town but we are hoping to get some land and build a bungalow so that Lillyrose will have a nice big room of her own and a wet room. We want to make it as disabled person friendly as possible for her. Hopefully the right site will turn up for us soon so we can get started.
We are also looking forward to the birth of our new baby this June, even though at times I have to admit that fear sets in and I panic that my next baby will have the syndrome too - even though the doctors said no way!!! - I am afraid to hope!!
As for Lillyrose I really hope that this year brings her some progress especially with her head control and sitting up unaided. It would be so good to see her having that independance. Also we hope that she will be able start on solid food next month and will do well with it. Again a bit of normality for her and us. It would be great to be able go to town for a coffee with her and that have to pull out the feeding pump and have everyone staring like we have 40 heads.....its so annoying but I try to remember that people dont mean it.
Sorry now I am rambling on now so will sign off.
Hopefully will have more news on my next post.....
Saturday, January 15, 2011
Wednesday, December 29, 2010
HEAVEN'S VERY SPECIAL CHILD
A meeting was held quite far from Earth!
It's time again for another birth.
Said the Angels to the LORD above,
This Special Child will need much love.
Her progress may be very slow,
Accomplishments she may not show.
And she'll require extra care
From all the folks she meets down there.
She may not run or laugh or play,
Her thoughts may seem quite far away,
In many ways she won't adapt,
And she'll be known as handicapped.
So let's be careful where she's sent,
We want her life to be content.
Please LORD, find the parents who
Will do a special job for you.
They will not realize right away
The leading role they're asked to play,
But with this child sent from above
Comes stronger faith and richer love.
And soon they'll know the privilege given
In caring for their gift from Heaven.
Their precious charge, so meek and mild,
Is HEAVEN'S VERY SPECIAL CHILD.
It's time again for another birth.
Said the Angels to the LORD above,
This Special Child will need much love.
Her progress may be very slow,
Accomplishments she may not show.
And she'll require extra care
From all the folks she meets down there.
She may not run or laugh or play,
Her thoughts may seem quite far away,
In many ways she won't adapt,
And she'll be known as handicapped.
So let's be careful where she's sent,
We want her life to be content.
Please LORD, find the parents who
Will do a special job for you.
They will not realize right away
The leading role they're asked to play,
But with this child sent from above
Comes stronger faith and richer love.
And soon they'll know the privilege given
In caring for their gift from Heaven.
Their precious charge, so meek and mild,
Is HEAVEN'S VERY SPECIAL CHILD.
Tuesday, December 21, 2010
The run up to Christmas
Sorry now but I am so new to all this blogging (if thats even a word!!), I just notice so many parents have pages for their families I said i better do the same so we can get to know all of you WHS families out there, and that maybe ye can help us out some times if we need it!! Its a good support network to have, as its hard to find people who can understand.
Well i cant believe its Christmas week and we have our little angel here for it. Its been such a long dramatic year I just cant wait to start 2011 fresh. Dont get me wrong I love Christmas and cant wait for it, but after all the heartbreak from 2010 I cant wait to ring in the new year.
So far Lilly-rose has been doing so well, she is now almost 5 months and I cant believe it. She has only had two spells of hospital so far (and one of those was for elective surgery on her face for her lip repair) which is a far cry from what we were told to expect! She is doing well with her weight gain and growth also, she is mostly NG tube fed but does take some bottle feeds. Her doctor is anxious to try her on solids for the New Year so hopefully that will go well. Her Physio seem happy enough with her progress even though her head control is still very weak, I am hoping and praying that this also improves. She has been smiling now for a month of more, and has begun making cooing sounds, so all that to me is good progress. She is such a cutie and full of fun. We bought her to see santa the other day and she was so tiny on his lap you would just have to laugh. Dont know what she asked for....but I asked on her behalf for a healthy happy 2011 : )
Well i cant believe its Christmas week and we have our little angel here for it. Its been such a long dramatic year I just cant wait to start 2011 fresh. Dont get me wrong I love Christmas and cant wait for it, but after all the heartbreak from 2010 I cant wait to ring in the new year.
So far Lilly-rose has been doing so well, she is now almost 5 months and I cant believe it. She has only had two spells of hospital so far (and one of those was for elective surgery on her face for her lip repair) which is a far cry from what we were told to expect! She is doing well with her weight gain and growth also, she is mostly NG tube fed but does take some bottle feeds. Her doctor is anxious to try her on solids for the New Year so hopefully that will go well. Her Physio seem happy enough with her progress even though her head control is still very weak, I am hoping and praying that this also improves. She has been smiling now for a month of more, and has begun making cooing sounds, so all that to me is good progress. She is such a cutie and full of fun. We bought her to see santa the other day and she was so tiny on his lap you would just have to laugh. Dont know what she asked for....but I asked on her behalf for a healthy happy 2011 : )
Subscribe to:
Posts (Atom)