Jessalyn's Health Issues #2

Shannon I hope they have allowed you to bring Jessalyn home today. Hugs to you both.

wow Shannon fantastic news that you are both home and doing so well \/ how good does your own bed feel??

Sounds like things are progressing very nicely, lol about avocado poo..well if it's what the dr ordered I hope so much that the Kasai is a sucess!! [-o<

Wow @ all the meds..Felix is on antibiotic now and screams every time he takes them, I hate it, but will try to think of Jessalyn when I'm giving it as this does will be over soon..

The bloating sounds abit scary, glad it's all gone..she really is amazing, I don't want to be trite, but sometimes when I think about all she has endured I believe that she can handle anything in her life, I know that Felix is now a very resiliant little boy, no knocks keep him down because he's been through so much big pain..hope the same s the case for little Jess!!

Relax now Shannon..you've done well!!

Love to you both!

Shannon what a great way to start the morning.... reading that post of yours which was so full of joy!

I remember Zeke was really bloated after his ops too. It really changed the way he looked a lot.

LOL at the avocado... hope you can get passed the analogy and still enjoy them

Shannon I'm so happy for you that you are home and Jessalyn is going well.
Sending loads of love to you and your family.

What wonderful news Shannon. So glad to hear you are home and your precious lil girl is doing soooo well....no doubt shes picking up all the well wishes coming from everyone across the country!!!

Jo

Yay Shannon! I am so glad that you and little Jess are now home!
Go the guacamole poos!!!

Shannon,

So glad to hear that you guys are home. The girls must be thrilled! Here's hoping Jess continues to make a great recovery.

Time for you all to enjoy being together again.

Love,

Mel

Shannon,
I am so happy you and Jess are home and are doing well.....Please know that you are still in my thoughts and will continue to be. Jess is obviously a trooper but I think all of us on Belly Belly know where she gets that strength from and thats her beautiful mum!! Keep your chin up Shannon and know we are all here for you and your family!

Jess

Glad to hear that you are home.

I can understand the med thing. It seems as though it never ends, but you do get use to it.

It sounds as though things are really going well. Jessalyn is a trooper, but I think her mummy is aswell. Big hugs to you both.

Oh Shannon words can't describe how glad I am to hear you are home and things are going well, I am going to look at avocado's too as a good thing LOL. Everytime I go in the supermarket I'll think of Jess's poo's!PMSL.

We are all praying that the op was a success! I imagine you snuggled up in bed and it is such a nice picture. Great job on getting through this very tough first stage, keep your chin up.

Best wishes michelle

ow Shannon its great to hear the news

Great to hear the news.

What happens from here? When do you find out whether it was a success?

So wonderful to hear that you have gotten your little princess home. Here's hoping that things just continue to get better & better for you guys.

Hi Shannon- just popped in to see how things are after your weekend home, hope the poos are still the same and that the kids have settled back into having you all home together.

Best wishes Michelle

Shannon i can really feel the pain and frustration in your post, and I can totally understand those "what if..." feelings.

You do need to let it out or the pressure will build up inside until you explode.

Please know that I care about what is happening in your life at the moment, and I pray for you guys regularly, that you will have peace and hope and strength.

But please don't think your emotions aren't valid. It's natural to ask the questions that you're asking, and experience the feelings you're feeling (even though that's no consolation).

Hope your adorable little princess gives you a smile from the heart today. She may not be able to express it yet, but she loves you and she cherishes the support and selfless love you give her.

Shannon, I'm so sorry to hear that Jessalyn's health issues aren't resolving as positively as they might have. Not being a mother yet, I can only imagine how worried you must be, and sad for Jessalyn not having the best possible start in life. I am just hoping and hoping that you'll get some really bright news soon, to offset the worry and bad news. *huge hug* for you, Jessalyn and family.

xxx

Shannon there is nothing wrong with you feeling the way you do today, infact its all part of the journey. You need to deal with the bad stuff to or it will build up and explode at some later date. Everyone here is behind you 100% and when you need to dump on us please do. Maybe the support group through the hospital would be able to help.

Its impossible to always be positive and strong and not always healthy either. Sometimes even just a good cry helps relieve the tension that builds up. Remember you have had a very stressful time over the past few months. It does not make you any less of a person to have a bad day (or even bad few days).

Regarding a Liver transplant, its one of the better organs to need a transplant for as you can have a living donor as the liver can re-generate from just a section. You will be surprise how many family and friends would be prepared to be tested and donate should the need ever arise. When it looked like I would need a kidney transplant and the whole issue hadn't even been openly discussed I had cousins, friends and even work colleges offering to be tested for compatability. Yes waiting list in Australia are horrendous but there are also many people who would offer should the need arrise.

Remember Shannon, you are an incredible woman and amazing mother. All you can do is the best that is within your abilities and you certainly do that. You, all your girls and family are in my thoughts and prayers, and I'm just one of the many (very many) BellyBelly people who are sending all our positive thoughts your way.

Oh Shannon :hugs: it is SO natural to have days like this..it's funny I always though with Felix that having a diagnosis would end the confusion and uncertainty, but when I read your post, it can also be the beginning.

Sometimes being told your child has "this" can mean you look ahead too far, to all the posibilities and journies that other children have made. It takes you from thinking in the moment and her and now to thinking..one day she may have a liver failure and need a transplant, not to mention the other things she has to deal with.

I remember a mother talking to me when i worked looking after group of children for vacation care, and her son was 6 and she looked at the older children, and asked me..is that what my son will be like when he is 12? I could only say to her that the common link they had was autism, but who they became as a person and how that affected them, was complete unknown. Jessalyn may share things with other Biliary Atresia kids but her journey is her own..

I can only say that I have had times where I thought like you, wondering what would happen if Felix did have an auto immunity disorder (not completely ruled out) what would I do if his systems kept shutting down..god it was torture..I think no having a diagnosis forced me to live in the present, because we have no idea really how bad his future could be or not be..

You are a wonderful mother, you are doing everything a loving mother would do, grieving for what your adored child may not have in her life, you do not have to be strong every day.. I actually never liked when people called me strong or said I was coping well, because it made me feel like a fraud because I certainly didn't feel like I was coping well..I felt like my insides were being pulled out and knotted everyday..but I do have mostly good days again now

Just trust that Jessalyn has the tools she nees to get through this the best way she can, a loving mother, a loving family, and knowledgable doctors..I just know Jessalyn is going to be a wonderful child no matter what her needs may be.

I hope you find some support through the people at the hospital, I know it is something I would feel I need..