- That we received Ellies diagnosis of Wolf Hirschhorn syndrome
- That Ellies ear operation was cancelled 3 times due to other hospitilzastions
- That Ellie started to some what enjoy food
- That Ellie learnt to roll
- That Ellie started having seizures
- That Ellie found her feet and started eating them
- That Ellie found her voice
- That Ellie got her glass eye
- That had about 10 hospital stays
My wishes for 2010...
My wishes for 2010...
- Continuation of good seizure control (Ellie has had no seizures for 4-5 weeks
- That Ellie continues to improve her development
- To make people more aware of Wolf hirschhorn syndrome, and in turn making strangers more accepting of people with a difference or a disability
- More time out for Luke and me, to have some better quality time together
- To reassess all of Ellies therapy, and work out what is best for her right now.
- To learn to not become so frustrated with hurdles that are put in front of me
- To live and enjoy life, as we always have
Ellie has made some impressive accomplishments this year. We pray that 2010 holds even more greatness for Ms. Ellie. Sooo glad to hear that her seizures are under control. What a relief.
ReplyDeleteI hope that 2010 brings great things for you!
ReplyDeleteWow! What a year. We have a list of our own which includes the WHS diagnosis.
ReplyDeleteLooking forward to 2010 with you. Cannot wait to witness all the joy and triumphs for Ellie!
To Melissa and Luke,
ReplyDeleteWe came across your blog while surfing for info on WHS. We really hope Ellie will make great development in this new year.
Our little daughter was borned on 4th dec 2009 weighing only 1.82kgs, and later was diagnosed with this WHS. Our baby was borned seemingly normal except that she is too small and it never crosses our minds it has smthing to do with this syndrome. We were made known about it today, when we went for PAED appointment at Leicester Infirmary.
It's really hard when we first told about it and we are still trying to comprehend the whole thing about this syndrome.
Anyway, we'll keep on visiting your blog, which we believe,after what you've been through, it is really an inspiring read and could be a good guide for us...
see u again.
Min and Din
Hi Min & Din, We understand what you are going through, we too only found out recently about Ellies diagnosis. Yes its hard trying to coprehend all that the syndrome involves but let me tell you from our own experience and from information from other parents of kids with WHS, these kids are so loving and it is so rewarding when the reach milestones. All the best, we hope you find Ellies story useful, and please if you have any questions please contact us. Would be great to keep in touch.... Chat soon
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