Update on Perinatal appointment and James' blood work (a little OT)

[Ilovehim89]

Blood work for James- 4 people had to hold him down and they wrapped him like a mummy because he wouldn't hold still and was kicking and screaming (he is STRONG!!)


Perinatal appointment-- Laylah Grace has Bilateral Club feet, it has been confirmed I even saw it before anyone even said anything. Also they were asking about genetics on a form and when I got back the lady asked me about it...When They saw that James (my son) is having a mosaic down syndrome and fragile x test, she said that when she first saw James, she thought Mosaic Down syndrome..but we will know in 7-10 days...

U/s pics coming soon!!

 

[Ilovehim89]

bump

 

[Skippy54]

oh hun, sending you hugs xxx

 

[ellie27]

Sorry, I did read and run....I didnt know what the mosiac downs is and didnt want to ask......

Hope all is well

 

[Ilovehim89]

Sorry, I did read and run....I didnt know what the mosiac downs is and didnt want to ask......

Hope all is well

Thanks
Mosiac Down syndrome is a form of DS but a little different. they can have some of the facial features of Downs or all of them. It is when it isn't a full Trisomy 21.


If anyone wants to read up on it...here is some info: https://downsyndrome.about.com/od/whatcausesdownsyndrome/a/mosaic_ro.htm



and what laylah grace has= https://en.wikipedia.org/wiki/Club_foot

 

[tootsweets]

I hope you're not finding it all really overwhelming, and that you have enough support in real life to get you through this. It's the waiting and not knowing that's tough.

 

[Ilovehim89]

Yes the waiting is the absolute hardest

 

[aley28]

Does the Mosaic Downs mean he isn't autistic, or does he have both?

Poor little Laylah Grace... is the club foot severe?

 

[amipregnant]

hiya hun, were they able to answer all your questions so far?? how are you feeling are you ok?? bless James what a little toughie!! was he ok afterwards?

 

[_simo_]

Sorry, I did read and run....I didnt know what the mosiac downs is and didnt want to ask......

Hope all is well

Thanks
Mosiac Down syndrome is a form of DS but a little different. they can have some of the facial features of Downs or all of them. It is when it isn't a full Trisomy 21.


If anyone wants to read up on it...here is some info: https://downsyndrome.about.com/od/whatcausesdownsyndrome/a/mosaic_ro.htm



and what laylah grace has= https://en.wikipedia.org/wiki/Club_foot

Hiya, sorry you are only finding out about this now! I had never heard of Mosaic DS, thank you for the link. He looks a right wee cutie, and I'm sure everything will be fine, regardless of any diagnosis xxxx

 

[tummymummy]

Big hugs hun xxxxxxxxxxxx

 

[Wantabean]

I am sorry u are going through so much!!!! Laylah will be able to get surgeries and a brace in attempt to correct clubfoot yeah? Hope u get a proper diagnoses of James' condition, i know he will get the therapy and support he needs xxx

 

[amerikiwi]

So sorry you have to go through both tests, especially at the same time. Sounds positive that the right tests are being done for James so that he can get the support needed. Although seeing your son stressed and restrained like that must have been awful for you. Have you discussed the treatment options for Laylah Grace with the docs yet? Sending big hugs.

 

[Ilovehim89]

Does the Mosaic Downs mean he isn't autistic, or does he have both?

Poor little Laylah Grace... is the club foot severe?

Well we dont know for sure if he has MDS until his blood work comes back in a week or so. They said he did have the facial features of someone with Mosaic DS but they still want him to see a neurologist for his seizures and possible ASD.

and the club feet were pretty bad...I mean, I even saw it, clear as day on the u/s when she said she was looking at the feet before she said anything about there def. being something wrong with feet

 

[aley28]

Does the Mosaic Downs mean he isn't autistic, or does he have both?

Poor little Laylah Grace... is the club foot severe?

Well we dont know for sure if he has MDS until his blood work comes back in a week or so. They said he did have the facial features of someone with Mosaic DS but they still want him to see a neurologist for his seizures and possible ASD.

and the club feet were pretty bad...I mean, I even saw it, clear as day on the u/s when she said she was looking at the feet before she said anything about there def. being something wrong with feet

I hope everything goes smoothly figuring out what is going on with James and in caring for your baby's feet. It must be very emotionally exhausting to handle all of this at the same time, during pregnancy nonetheless... definitely hope you have some good support!

 

[Ilovehim89]

Does the Mosaic Downs mean he isn't autistic, or does he have both?

Poor little Laylah Grace... is the club foot severe?

Well we dont know for sure if he has MDS until his blood work comes back in a week or so. They said he did have the facial features of someone with Mosaic DS but they still want him to see a neurologist for his seizures and possible ASD.

and the club feet were pretty bad...I mean, I even saw it, clear as day on the u/s when she said she was looking at the feet before she said anything about there def. being something wrong with feet

I hope everything goes smoothly figuring out what is going on with James and in caring for your baby's feet. It must be very emotionally exhausting to handle all of this at the same time, during pregnancy nonetheless... definitely hope you have some good support!

Thank you.

 

[chezziepie]

big hugs I hope you get all the information for James soon x x x

 

[Pielette]

Bless your little boy, it must be overwhelming and weird when you're very young and people are trying to get a needle into you. Hope he's feeling better now!
What have the doctors said about Laylah-Grace and treating the feet?

Hope you're doing ok throughout a really nerve-wracking time and big hugs to you and your family

 

[Ilovehim89]

Bless your little boy, it must be overwhelming and weird when you're very young and people are trying to get a needle into you. Hope he's feeling better now!
What have the doctors said about Laylah-Grace and treating the feet?

Hope you're doing ok throughout a really nerve-wracking time and big hugs to you and your family

thank you

They said that with the club feet they will try the casting on both feet first and if that doesn't work then she will need surgery

 

[new_mum]

Aww hun just want to send you big hugs I'm sure your out of your mind with worry