Hi, im a first time mom and the past few weeks have been really emotionally draining for me and my husband. Never really go into forums like this but I really need someone to talk to otherwise id probably go crazy
My little girls is 4 weeks post Kasai and doing great (lab values going down) however concerned of her reaching her milestones. I know she will be delayed but shes already months and couldnt still lift her head up.. She smiles a lot and coos a lot but her motor developement is not progressing. Anyone there on the same boat or when will i expect her to reach these milestones. She is gaining weight finally but slowly after increasing her calories in the milk 2 weeks ago.. Thank you
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ZoieAnne
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Hi there, welcome to the forum!
Really sorry to hear all that you, your husband and your little girl have been through over the past few weeks and months.
It is lovely to hear that she is smiling and cooing a lot and is a happy little girl. That means so much especially after all she has been through.
I'm no expert on what to expect after Kasai but after my son's liver transplant (he is 5) it took several weeks for him to be able to lift his head from the pillow. Recovering feom an operation can be hard work. It can be so hard when you are actually going through it, but six months later he is running around and I have trouble keeping up!
Look after yourselves too and do ask for help if you need it ... Friends, family, or your specialist nurse or doctors... The team may have a counsellor which can be really useful - it can really help to see things in a different light. And for your daughter the team may be able to refer to a play therapist or physiotherapist who can help enable her to develop as fully as possible.
I have a friend whose grandson has a neurological condition which led to slower progress in his development in the early years. It was hard for all the family but it enabled them to really cherish and enjoy every single milestone and achievement. He is now a very chatty and confident ten year old.
Your daughter is blessed with loving and attentive parents... very best wishes to you all.
thank you for the reply, i really need to hear that. we had a check up with the pediatrician today and he said that everuthing is expected of her shes got good neck control despite the Kasai operation.. problem now is she did not gain weight in 1week. we still yet to have blood work next week and consult with the dietitician again. Im afraid she's starting to thrive. so so anxious. thanks again means a lot ❤️
We have a daughter with BA too. Those early days are really difficult times. Know you are doing a great job and she is improving which is brilliant. It is great to hear her bloods are coming down already (our daughters took ages). Our daughter was really delayed in the first year and needed special boots when she began to walk but she is now 11years old. she plays in our county orchestra and has just gained a prestigious scholarship to her choice of secondary school. She leads a normal life and although she had many complications in the first years she only has yearly checks with the liver unit now.
Remember your little one has had major surgery and her stomach muscles will be weakened for a while too. I have 3 children who all developed at different rates try not to worry but enjoy each day because they grow up so quickly.
Take care I hope all goes well for you and your family. x
Thank u so much for those kind words.. its so hard to deal with insensitive people telling my child is so small and asking what i did during my pregnancy. Anyway, most of her lab values are close to normal except for the ggt wc is still high. She's starting to lift her head but only for seconds, i guess thats the start of it. Pedia says shes got good neck control.. shes nearing 4months. I guess i will know more in the next months if the Kasai failed or not. Thank you deeply for replying. means a lot
WOW her bloods are close to normal that is amazing. Our daughter still has raised bloods and the ggt is 5 times normal on a good day! Try not to get hung up on blood results. I am so guilty of that but they go up if she is having a growth spurt and other things effect some of the results. It gets easier to deal with People who are so insensitive but its really hard when you are feeling so emotional and trying to act normal. GPS and local hospital drs who know less than you about BA are the worse. Stay strong and follow your gut instinct. You will be right. Don't let anyone put you or your little one down, you have been through an experience they can't even begin to imagine or understand. Stay strong and if anyone comments on her scar (which will grow with her) remember what our daughter says "I am proud of my scar it is proof I am stronger than this BA thing that tried to destroy me" or if it's a child she says she is a secret superhero who got the scar saving the world!!!!
Know it is natural to worry and that that is proof you are doing a fab job of looking after your little one.
Ask as many questions of your liver team however stupid you may think or feel they are cos if you don't you will lay awake at night worrying and wasting energy and they will probably have been asked the same question many times before.
most of the labs are normal already except for the ggt.. she hasnt gained weight in a week now but i will follow up with the dietician with regards to that. Thank u! it os super scary not knowing what the future holds for my little girl.
your daughter is such so brave! i love how she thinks esp about the scar ☺️ oh how i wish my lil girl could talk to me too soon.
oh and i didnt know that she can have odd lab values if shes havin a growth spurt. Thank u for all the information ❤️ Shes doing really great.. i hope she'll never have to have a liver transplant. but i am preparing myself aswell.
Hi my daughter has BA and is now nearly 9, enjoying life to the full. She had a Kasai at 5 weeks and took a while to gain weight. we try and live each day as it comes and take help when you need it, talking lots has helped all of us. Hope you daughter is feeling better x
that is so great to hear! Did ur daughter have any complications after the Kasai? that is so amazing... its nice to hear that there are successful ones too out there. altho i am ready for the transplant in case she does need it in the future
Hi, thankfully no complications,she had an infection when she was three and treated with iv antibiotics. We keep our fingers crossed for the future and keep healthy in case we are needed for transplant. She really does live life to the full and I am sure your daughter will to. CLDF events are great to meet other families and our daughter really enjoys meeting others in the same situation. Take care xxxx
Hi Zoie, this will be an emotional time for you and your family and you will be feeling the strain. Your little girl is still only 4 months and has lots of time to catch up. However if you are concerned that her motor skills are not progressing it may be worth asking to be referred to a physiotherapist. I hope this is useful - Jacquie
Thank u for your reply. She is starting to lift her head up and i am so happy. I am taking it one day at a time and helping her to reach those milestones. I have great news today aswell, most of her labs are normal already 5weeks post Kasai hopefully the ggt would go down aswell. i still cry everyday but now i can say that most of it are tears of happiness ❤️ thanku
Hi I am a mum of a 4 year old perfect, brilliant, runs around crazy boy. We went through the same feelings, Adam couldn't sit up or roll over etc until he was 18 months we worried and worried about it and eventually spoke to our consultant who advised that the kasai damaged tummy muscle and therefore it was normal for him to take longer to do this, she advised that if he hadn't started to work out a way of doing it for himself then he could be sent to physio to teach him, fortunately we didn't need this. My advice is with any worries you have no matter what they are, speak to your consultant as it really helps. Unfortunately you never stop worrying, when they start walking around they bump and bash themselves but you can't wrap them in cotton wool. I try to let him be as normal as possible, he recently started to tell people that a shark bit him lol
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