Nikkinoonoo - Hows Jessica?

[Wobbles]

Hiya

Hows your little lady doing?

I'm not sure if I've missed any updates & plans with what comes next for Jessica

x

 

[Nikkinoonoo]

Hiya

Hows your little lady doing?

I'm not sure if I've missed any updates & plans with what comes next for Jessica

x

Hiya Wobbles,
Thanks for asking, it means so much that you guys on here take such an interest, I'm touched.
We have had a few appointments but with not much to say really but this week we have a couple of big appointments.
She has physiotheripy for her hip on the 3rd October, her hip on her good leg is slightly shallow altho they have clearly stated to us that it is clinically normal and the only reason it is being monitored is because of her poor leg the other side.
Then we have an appointment with Miss Eastwood who is a limb consultant at Great Ormand Street and Stanmore Orthapaedic hospitals. She will more than likely be talking jess on as her case but we have yet to meet her. I'm looking forawrd to this meeting as I have a
few questions to put to her.
Then towards the end of the month we have to see Mr Hunt at St Marys hospital when we saw him last which was a few months ago now, he requested my scans. They have sent the hip ultrasound scans to him but not my antenatal scans so I'm not so sure what he is gonna have to say.
Also, when I went to Ealing hospital last I told her consultant there that now I'm over the initial shock of her deformity, I'm very angry and feel it very necessary that an investigation be started into why no abnormalities was detected during my scans. They keep saying that as I'm a big girl it was hard to see Jess. Sorry but thats bollocks cos if they couldn't see her, why was they requesting monthly growth scans? I think they know I have a good case, and am prepared to go all the way for compensation for my baby. I would like to think that if one day she needed a better prosthetic or a specially adapted car or something in the future I would have fought her case and have that money waiting for her. Anyway they're sorting out a meeting with the antenatal staff for me and boy will I let rip!!Well my quick summary turned into a novel a bit there, hope you haven't nodded off lol.
Wishing you and your family lots of love and hoping you have a brilliant pregnancy.
Thanks again for your interest, it really means a lot
xXx

 

[Wobbles]

These appointments must be emotionally draining for you? Cartainly all steps to positive outcomes. In advance good luck with Jesscias appointments to her - she will grow strong with it all because her Mummy is x

They were requesting monthly growth scans on your pregnancy & you were not told why? Do you think they knew? Sorry if I misread that!

Do you mind me asking what the future looks like for Jessica? Will/does thss effect her crawling? Will she walk ok? Do they leave the foot as it is? Sorry if my questions upset & hope it is ok to ask *hugs*

x

 

[Nikkinoonoo]

Of course it's ok to ask
They were requesting the growth scans because she was measuring a big baby and was usually measuring 4 weeks ahead. She was 10 days early and weighed 10lb 1oz at birth, they also kept doing glucose tests altho they were always clear.
As for Jessies future they haven't commited themselves properly as to what will happen, we are still seeing several consultants ( Hunt, Eastwood and Cummins) to try and determine who is the best person for her treatment as some specialise in bones, some in limbs etc.
What looks likely altho not deffinate is that she will have the twisted little bit of her foot removed by amputation so that a prosthetic can be fitted. The good news was that her knee is looking fine on that side the problems start just below. Because of this it means crawling *should* be ok. The won't begin to do much until she's about a year as that will be more the time when she will be needing it for standing/toddling and also so as they can see what usage she has in that leg.
We was assured that kids are very adaptive and as she has never had a fully formed leg on that side she will use what she's given and it wont be so much of a problem as she wont miss what she's never had.
It is very draining and at time I just wanna curl up and cry my heart out for her. She is such a happy baby and healthy in every other way, she is perfect to me and my life.
It is going to be so hard taking my gorgeous girl in to hospital knowing they will be cutting bits off her. Everyone says "It's for the best Nik", I so know that and appreciate it but It's still oing to break my heart.
I have put a picture here for you to get an idea of what her deformity looks like
xXx
https://i306.photobucket.com/albums/nn260/nikkijellybelly/foot2july08.jpg

 

[polo_princess]

Im glad your getting somewhere for Jessie hun. Loved your holiday piccies looked like you all had a fab time!! She's such a happy little baby bless her!!

 

[sam's mum]

I've been meaning to ask how you're all getting on. From all the photos I've seen she's definitely a very happy little girl ...with the most adorable hair ever! I can't even imagine how draining it must all be for you though. Strange that they haven't sent your scans on - if you'd been for growth scans they would have done detailed measurements so it sounds like they're just making excuses - femur length is one of the measurements they do, so it seems strange that they wouldn't have been aware of it at the time when they're looking at the top part of her leg. Definitely worth a fight anyway, as you say you'll have done everything you can to help her out in the future with anything she needs.

Just wanted to say that my best friend had surgery on his leg at Stanmore this year - they've certainly got an amazing team of consultants and surgeons there and I'm sure she'll be in great hands x

 

[Wobbles]

Glad you were ok me asking ...I always understood what you said but I was never sure if to ask questions esspecially as you were still finding your feet after the shock

It is very draining and at time I just wanna curl up and cry my heart out for her. She is such a happy baby and healthy in every other way, she is perfect to me and my life.

Hun shes happy & healthy in EVERY way her little leg is how she will grow up that will be her life and body she is use to (as people have said) but inside she is healthy outside she is happy because she is loved. She won't want Mummy crying

It is going to be so hard taking my gorgeous girl in to hospital knowing they will be cutting bits off her. Everyone says "It's for the best Nik", I so know that and appreciate it but It's still oing to break my heart.

I couldn't imagine your heartache at all but I do hope one day you look back & thank those that helped Jessicas progress, glad the surgery is over and see lil lady toddling about making all these times to come soon a distant memory & a positive ending.

Let us know how her appointments go - good luck Jessica again I hope they place her with the best care x

 

[Nikkinoonoo]

I am already so thankful to all those who have helped Jess, medically and prefessionally and also family and friends. I'm so lucky to have a loving and close family, some wonderful friends and you lovely ladies on here. Without the support I have been given by everyone I think coping with this situation would have been a nightmare and a real struggle. As it is now, I have so much support myself and everyone who meets Jess falls in love with her! Her little personality really shines thru and I know that once she's got her little foot sorted, nobody will know the difference, I really can't wait for that day.
When she grows up I Will take great delight in telling her how special she was and is, and also how she had the love and support of so many.
Thanks again Wobbles and the rest of you girls, it's brought a tear to my eye that people you have never met can care so much too

xXx

 

[Suz]

I was watching Oprah the other day and she had Jenny Macartney on. They were talking about her new book Mother Warriors..... So they were talking about mothers who do amazing things and go above and beyond. for their kids... and well your one of those Mother Warriors.... You are doing everything you can for your little Girl... Keep fighting and dont stop until you get all your answers. Jess is truely blessed to have parents like you and your OH....

 

[Nikkinoonoo]

Bless you, thanks so much Suz that was a lovely thing to say xXx

 

[clairebear]

huge hun ur an amazing mummy. jessies is such a happy little babba. glad things are moving along and i really hope u get the compensation fir little jessie x x

 

[x-amy-x]

Hope the appointments go well and they can help Jessie sooner rather than later. If they can do something while she is still small, she will adapt to it quicker. She has known no different, while it may hinder her a little, she is a little fighter and will get there!

 

[nikky0907]

She is a beautiful and happy baby,and who wouldn't be with such an amazing strong mommy looking out for them...
And good luck with the investigation,these people definitely have some explaining to do!

 

[Nikkinoonoo]

Thanks again ladies, your support means a lot xXx

 

[ColtonsMom]

Just wanted to say you have an amazing beautiful girl and I'm glad she is doing well! I think you really have a strong case. Because like sam's mom said, the legs are one of the measurements they do at scans. There isn't a reason they should have missed it. (Heck, the lady that did mine told me Colton had fat legs!)
I really do think you should go at them full force for her compensations. She will need it in the future with medical bills and such!

 

[Wobbles]

I didn't realise legs were one of the measurements.

Idiots!!! It can't have changed things but my goodness - strong strong case based on that.

x