"How cute is this little girl?"
So here we go again....We have been busy the last few days... All good of course. Ava is done with the bug she had and is doing really well. I even hated to type that for fear she might pull something on me! Lexis and Emeline are all done with their colds and the best news of all is Ava never got their cold. AWESOME right? I just am shocked, really. Poor girls I made them wear masks and I think that actually really, really helped. Emeline is almost finished with her antibiotic and I think finally her strep is gone. I will have to take her back and do a Strep test on her next week to be sure she isn't a "carrier" of the Strep. Huh it would figure if she was!!
As I said we have been busy. We decided after "black" fingernail polish was spilled on our creme couch it was time FINALLY (13 years) to get new furniture. I picked out what I wanted and boom it was done. My wonderful uncle Gary and Bob helped us get it home. ("Thanks a million guys!") It looks so good with my wood work. I was debating but decided to go ahead with the "brick" color. It goes really well. It is so nice to have something new and comfy! We can all sit in the living room now and still have room!
Ava has been healing and looking great. I have been slowly upping her g-tube feeds. She is up to 20ml's an hour for 8-10 hours during the day and then at night I turn her down to 12 ml's and hour. Her tummy doesn't want to work as hard at night but to me that makes perfect sense. I wouldn't want to eat at night. Then again I don't have a central line either. As I said before the goal is to try to get her g-tube feeds up to 500ml's per 24 hours and discontinue the central line. Right now she is getting about 280-300 ml's per 24 hours. So we still have some work to do. Of course our ultimate goal is to get her feeds at a higher quantity so that she gets fed 3 times a day or all at night. (Not thinking night feeds are going to happen. However I've learned NEVER to say never!) AND I have been mixing her Elecare to 22 calories instead of the 20 that I was doing. She has been picking at food. She loves Pringles and pasta. I think she ate about 3 pasta's today and one Pringle. She does drink water through out the day which is good as well. I still think she is really scared of things coming back up. She still throws up at least once a day (except, none at all yesterday) but the volume is very small usually about half an ounce! I'm just happy the green bile is gone!
Here are some pictures of the last few days. I always say, NO news is good news so please don't worry if you don't see an update. If something comes up I will let you all know. If all is going good I don't feel the need to post updates. I'm just so thankful I can write this!
I just put this up on her wall over her bed, a few days ago. We received this from Dave and Heidi when Ava was in the PICU. I was going to wait until Ava had her "own" room again but then thought that could be months and months (maybe years) so I went ahead and put it up. Standing back for the first time and looking at it.....tears came to my eyes. How true it is...."Such a BIG Miracle in such a little girl." (Thanks so much Dave and Heidi. It is perfect. I'm just sad I didn't put it up sooner. It is such a reminder of God's constant love for me and my family!)
Ava enjoying the new chair!
Okay Emme made this chair for Ava. It is one of my laundry baskets and a bean bag! Whatever works I suppose!
Po has to go everywhere with Ava.
I wanted to thank Lisa, our home health care nurse, for bringing Ava a new g-tube bag. It is very small and it fits her very well. It was given to her by a friend whose daughter also has a g-tube. Lisa tell her "Thank you and that we LOVE it."
"See my new backpack everyone? It snaps in the front so I can't escape! Mommy REALLY likes it!"
This was this morning. Ava was watching...you guessed it, "The Wiggles!"
I don't know about all of you but in our house, Guitar Hero World Tour ROCKS! Here is some fun moments here at the Helmick house tonight!
Here is Lexis on the vocals and Emeline on the guitar!
Ava the drum set is NOT your sister's head!
Well thanks for all the prayers. Ava is doing all the right things. I can't imagine being so little and dealing with all that she goes through. She never complains or gets tired of all this medical stuff. It has sadly just become part of our normal. My Mother asked me the other day if I was getting tired of all of it. I told her it is just like changing a diaper or giving her a bath. It's just "what we do!" God is helping see so many positives in my life that I wouldn't otherwise have seen. I've met wonderful people. I've witnessed first hand God's love and mercy. We have been through so much and still have more to go but I am so grateful that Ava is still here in my arms. AND I'm happy to be home with all of my girls and the love of my life! Who can ask for more? It all boils down to your family and their health. Nothing else matters! God bless you all!