Today we met with the paediatric cardiologist from Bristol. He explained how many mitochondrial disorders affect the heart. I already knew this so was nervous to say the least, but hoping, praying and crossing everything that there'd be Nowt wrong with her little ticker. I mean, surely she has enough on her plate already.
I knew that dr Ch had requested some tests on the heart, but I thought, and probably for the best that today was purely consultation. Anyway, it wasn't; she had an 'echo' done on her heart. It seemed to take a lifetime...he explained things he could see to a student doctor-but it all sounded foreign to me ( I haven't yet educated myself on the heart). Anyway.... He said 'it all seems...NORMAL'!!!!!!!?
I usually hate that word. There's not much about Hope that is 'normal'. So to hear that her heart is normal, I'm ecstatic :0D
He did say that just because it's fine now, doesn't mean it always will be. Then more good news...... He wants to see her in 2 years!!! Well, there have been times when it all seemed so bleak that she mightn't ..... But, well I guess they aren't as negative right now.
I did however get some food for thought about the whole further investigation thing. He said how with certain mitochondrial disorders, different vitamins can be given to prevent/improve things, but until we know more.... So I'm being swayed :0/
On cloud 9 for a change :0)
Thanks to everyone for the good luck wishes and prayers today! Means a lot to me n honkey
And thank to S (hope's fsw) for coming along today. I know you'll read this, and that people from Rainbow Trust read it too- you'll never know how much it means to have the support we get from you. I expect everyone there is really nice, but we think we are really lucky to have S!!!
The laptop got a virus, so we had to wipe it. It's not up and running 100% yet, so can't add all the photos I want to. From my phone I can only add 1. So I will add one of the best photos we've ever managed to take of Hope (taken at her party) she's smiling AND looking in the right direction!!!
The party was fabulous. Hope was joined by her buddies for a bouncy castle party. We played pass the parcel and had a piñata. And ate lots of jelly!
Thank you to everyone who came to celebrate with us!!
To say that Hope was a much wanted baby would be an understatement. Longed for, dreamed of and needed would be closer to the truth. Her big brother Sam died on Christmas day 07, leaving her Mummy, Daddy, big sister- Jordan, and big brother Max sad beyond words. Four months after lil Sam's death, and we were blessed with another pregnancy. Surely everything would be ok this time around? Sam had died of a diapramatic hernia, so knowing the increased odds of having another baby with CDH, we waited before breaking the news to Jordan and Max. At 13 weeks gestation, we were given the all clear and told the baby was a boy. So why was I dreaming about a little girl called Hope? We broke the news to an excited Jordan and Max. This is when the growing fetus was named 'Honk' (will explain this at some point). After 2 weeks of delight our bubble was burst. There was something wrong. Here began our rollercoaster. Baby Hope was diagnosed prenatally with cerebellum hypoplasia and ventriculomegaly. We were advised to...I can't even type it, but obviously we didn't. Fot the first 3 months Hope appeared to be 'normal' - against the odds, but as time went on, it is becoming clear that all may not be as well as it could be. Hope is now globally delayed, and has recently been diagnosed with epilepsy. Did we ask for a special child? No, but we have been blessed with one. Would we turn back time? No. Hope has bought light where there was dark; smiles where there were tears. I'm sure we will learn more from her than we will ever teach her. Who knows what the future holds for Hope. But I swear, I will always do the best by her and she will know love! Update: Hope has recently been diagnosed with a mitochondrial disorder (high lactic acidosis). Due to the fact that any findings will not provide cures or even treatments we have declined further investigations (skin and muscle biopsies seem too much ).
I am happily married to Chris. I am Mummy to 4 beautiful children, but my beautiful 3rd baby is in heaven.
I am in my 5th year of a BA degree in Childhood and youth Studies. I enjoy my children, reading, studying, blogging, facebook, my friends, and if i get a spare moment, my newest hobby is knitting pretty little things for my smallest princess.