Mold me and Make me.

Hey guys! We had another good day. We have a hard time finding things to do. Ava would be happy being on her phone all day but I make her do things with me. Today we had molding clay and we took turns trying to figure out what the other was creating... or trying to create! We also did a workbook that was very interesting. It's called Digging Deep. "A Journal for Young People Facing Health Challenges. I highly suggest it. It allows the person to think about their illness in a positive way. It has sections where it talks about your fears, the why's they might ask themselves, the emotions they feel or hide and all kinds of things like friends to dealing with doctors they don't like/agree with what they want to do for them. I read a few things to Ava and we wrote them down. I won't talk about what we discussed because it's very personal. It brought a new perspective to my eyes about how she internalizes things. 

Ava is playing with molding clay.

Ava gave me permission to show her incision. It is healing but I'm watching the red spot in the middle. They say it is not infected but it may have some fluid under it that may or may not come out. The scar going across is from her very first surgery at 14 days old. Then the circle scars are from her g tube and abdominal drain. 

Ava is so embarrassed that I did this but for people that have had an obstruction (or their child has had an obstruction) poop is pretty glorious when you don't see it first a long time. Yes I drew a illustration of her poop! I was so proud, happy, excited and wanted the doctors to see it!!

 (I've taken pictures too but I'll be nice and keep them to myself! Ha ha!

Ava worked on her Stitch, Diamond Art. It is going to be beautiful! I can't wait to see it finished. Such a wonderful gift this was Jennifer and Kennedy! Thanks again.

No nausea... thank the Lord! She poop tonight so that is a great sign!

She started complaining about her back hurting. She said it's felt this way every since she woke up from surgery. The spot she points to is where they placed the patch. Her body may have to get adjusted to it. We tell her she can have pain medicine for it but she declines it.

The doctors think she looks and is doing great. I told them this morning that I was in no hurry to leave. I want to stay and know for sure that her bowels are working. I would rather stay longer than have to go through the pain and the Emergency room fiasco again. It is exhausting and worrisome especially with the Covid-19 virus still spreading. I'm happy that she is doing so good. She told me I was being negative today but I explained to her that... yes it may sound like that but I'm just being extra cautious. They gave her the whole menu but I'm just letting her eat soft and bland foods. If they move through we can go to heavier things. I've been called picky and overbearing... that is okay by me. Sad truth is I've been through this far too many times. Sometimes I feel like residents (doctors learning to be doctors) and some doctors just look at her chart and surmise that this is all we have ever dealt with. It's not. I'm so very thankful I started this blog. When she was born in 2006 we had a "carepage" to keep family and friends updated. When we got home and settled in blogs became popular and I picked it up quickly. I've always wanted to help other parents but never in my mind did I think she/our family would go through ALL these things. I say I wish I didn't know but I do so I might as well be helpful. A mother whose daughter was born with CDH like Ava got a hold of me today. Her daughter and Ava are only days apart. Their stories are similar and oddly she just had surgery on Monday for a bowel obstruction. She's dealing with the NG tube and so many more things that Ava just got through. Please keep them in your prayers. Thirteen is such a hard age. They aren't kids anymore and they think they have the world figured out but when bad medical flareups happen they have so much confusion in their heads. My heart was sad that she too was going through more issues. We discussed the girls talking on the phone once her daughter felt better. Ava just told me the other day that she thinks the reason she goes through these things are to help other people. That is such a mature way of thinking. *Oh and my point I almost forgot. I'm so glad I blog. My memory is not that good so writing everything down helps to keep things straight and right. Plus I can look back on my pictures and see things even more clearly.

Ava got a very cute lion and balloon from Walmart Distribution Center. It was very nice of them.

Thanks for taking tine out of your busy lives to check in on Ava. She is awaiting the day we will go home. This is the first hospital stay where I'm okay with staying longer. I pray that God will make a way for us to go home. She needs healing in her intestines. I ask Him to stop the scar tissue and open up and let things through. I know and believe He can do this!! Thanks for joining us in prayer. God hears our cries and He listens. We will continue to look toward Him and live in today!

God Bless You!

-Terri