Deficienct & People like us

We are still awaiting the genetic test to confirm her Alagille syndrome, but we are hoping to hear something by next week. All this will do is give us a definite diagnosis and completely rule out any other possibility, like a block.

Emmery seems to be doing well, but she is becoming vitamin deficient. With her condition it is difficult for her to absorb fat soluble vitamins A, D, E and K. She is now being prescribed Aquadek's which is a vitamin supplement specifically for those who have a hard time absorbing these. Hopefully that will help keep her vitamin levels up. If she becomes deficient in these vitamins it can effect her vision, her bone density, her growth, her reflexes, ect.  Our next appointment will be in September, so we will be able to see if this supplement is working for her. This is the main reason that she is smaller than the average 3 month old.

You don't really notice a difference in her until you put her next to a baby around her age. A friend of mine has a baby girl born 4 weeks after Emmery and she is bigger than our little babe. You can also notice her yellowish skin tone a lot more. Her strength is not the same and she just seems much younger than other babies her age.

Here is her and her buddy Emersyn. Emmery is 4 weeks older than her.

This picture gives you an idea of how much smaller she seems, unable to hold her head well.

 

Sometimes it's tough to take knowing she has such a rare disease when you can see how she could be if her liver ducts were functioning normally. It's still surreal sometimes. I mean, things like this don't happen to people like us. Or so we thought. I think we all think like that when something major, devastating, life changing, or damaging happens. How did this happen? And when you hear about it happening to someone else it's just hard to relate. You secretly are scared to know about it because well, you frankly don't want it to happen to you or your child and all it does is reminds you that things can go wrong. I think that is why it is so difficult for people to support those of us who have children that have special needs. It's difficult to relate to. I know I was like this. If I heard of a friend or a friend of a friends child in the hospital with some rare disease or cancer it reminded me that this could happen to my child. It scared me and I didn't want to try and get too close to knowing about it because it was just too awful to imagine. And here I am right in the thick of it, living it. It's a very lonely place sometimes because you know that others have a very difficult time understanding how this is effecting you. One aspect I wasn't prepared for is strangers. We are just learning how to deal with strangers and their reactions to her.
This is a typical conversation:
 "Aw how old is she?"
"About 3 months"
"Oh wow she's tiny? Was she early?"
"No she just has a little health issue going on."
"Oh well will she grow out of it?"
"Um we're not sure."

Or the best is:
"Oh did you know your baby is really jaundiced?"

It has really made me aware of how I talk to others who have major health issues or were born with special needs. I would rather someone ask me what her name is or comment on her adorable smile. I know they have good intentions and they have no idea how it effects me.
A great friend of mine that recently adopted a child internationally did an amazing job sharing with her friends and family about adoption etiquette. I was so thankful that she was so courageous and took the time to share with us what to say and not to say to adoptive parents and children. I felt like I could understand their position and little better. So this is my attempt at sharing with all of you. I am no expert and we are just at the start of all of this but if you know of or meet someone who is or has a medical issue or condition, be interested in them and not their condition. Ask them their name, what they like to do, how old they are. Comment on how cute they look, or what great shoes they have on. Really anything that you would say to someone that was what you would consider "normal".  Acting afraid of them or commenting how sad it is doesn't help. And if they would like to share with you what it is that you would consider "wrong with them", just sit and listen. Too many questions is sometimes overwhelming and sometimes there are no answers. An amazing friend of mine that has a son going through his own medical issues has been such a great support for me. She had a great idea to have them where stickers that say "Don't ask, Just Pray."

It's not that bad, others have it way worse than us. I am ok with how little she is and how yellow she is, but all it does is remind me that there is something wrong. Something looming down the road. I have to keep reminding myself not to think too far ahead because it could drive me crazy. How will other kids treat her? What if her liver doesn't do well and she needs a transplant? How will I handle her having surgery? It goes on and on.

But we are thankful for our baby girl. She is a cutie that loves smiling at her brothers. She loves to cuddle with Mommy and is learning to sleep in her bed! She focuses in on your face really well and loves to watch people.

I work hard at seeking peace over this. God can give me peace even when everything around me is full of chaos.
John 16:33 I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world.”

Thank you to all who are thinking and praying for our Emmery. We are doing as well as possible. It has effected so much of our life and we are learning how to handle all of it. One day at a time.

Currently we are making big decisions for me to continue to stay home with her so she can keep eating well and growing. Little miss isn't too fond of the bottle these days so we can't take any chances on her not eating. This means a big financial change for our family, since I was planning on returning to work next month.
If you're the praying kind:
1. We are praying that these vitamins work and she will no longer be deficient.
2. We are praying that her bilirubin continues to leave her liver and she doesn't get that itch.
3. We are praying that we begin to have peace over this life that she will live.
4. We are praying that we will be able to financially make it through this year while she needs me the most.


Love,
Emmery's Mom