Bring the Rain

I had to share this song today. I too follow blogs and care pages. I’ve been following Stella for a while now. She has Spinal Muscular Atrophy (Type I). Her Mother Sarah is such an inspiration to me. We sometimes forget that God uses our lives to not only help our aliening children but He uses us to show people that although what we are going through is really rough we CAN make a difference in MANY lives! As Ava continues to get better her daughter still struggles. I’m learning not feel guilt but yet to celebrate as none of us know what is just around the corner. We MUST praise God where we are in our lives. We MUST ask for Him to send the rain because we know with that Rain comes our ability to be closer to Him. “It is not our circumstances that change our lives it is what we do with those circumstances that determine how we live on!”

If you could say a prayer today for Stella and her entire family I would greatly appreciate it.

Ava is doing fine. Actually she is napping as I type. She hops around as though her life has been without medical issues. I did shed a tear today at the thought that so much good has been happening to her. I praise God for her healing and her ability to be more “normal” everyday.

Thanks for dropping by. My hope is to take our holiday family pictures tonight so keep your eye our for those. Much love to all of you!

~Terri

Comparing

Well Hello Ava supporters! Things are great here in Iowa. The weather has been beautiful this last week. Ava is talking more everyday. In fact on Monday I was giving her a bath and as soon as I was finished washing her hair she starting pulling at her ear saying, “Mommy ear.” I take extra care not to get water in her ears as we know her tubes are still in but not functioning. (She had tubes put in when she was about 10 months old.) I got her out and she continued to cry (huge crocodile tears) and pull at her ears. I called her ENT (Ear nose and throat) doctor that is right here in town. He’s a very good doctor that understands Ava and myself…;) He wanted to see her right away. I knew this was not like her to be so upset.So as you can all imagine I was not surprised when he said she had the start of an ear infection. He wrote out a script for ear drops and antibiotics. He was so happy we had caught it early. He said he had very little doubt that she would have been up that night with a fever. NOT a good thing for this Mom who suspects the worst and would have feared the Swine Flu.

She is feeling much better. So strange that she had no other symptoms. I’m just happy she is staying “the ‘H’ word” Can’t say it for fear of starting trouble!

I thought I would dig up a few pictures of her from last year before she reherniated and got deathly ill. She was a mere 19 pounds. I still have a hard time believing she was this thin. Her little arms had no meat on them. At the time she was skinny but still healthy in my eyes. She was still breastfeeding some…;)

This picture with the bear was taken at the Children’s Hospital of Philadelphia’s annual Fetal Reunion. It makes me a little mad and sad when I think we traveled all the way there. (16 hours) They were supposed to have checked her CDH problems closely and they didn’t. I felt it was a huge waste of our time. Luckily we were also visiting the wonderful people we had met while we were there at her birth. Please don’t get me wrong I am so grateful to CHOP for saving her life at birth. I personally think their cdh follow up clinic is a joke. I believe more tests could have showed Ava’s brewing bowel obstruction due to her Gortex patch they used at birth to give her a diaphragm. I say this because this problem didn’t happen over a few days. We were at CHOP just 3.5 months prior to her reherniation. I can’t blame I just wished I could have spared her a little less pain and trauma.

This picture was taken only 4 days before she was air lifted to University of Iowa Children’s Hospital. We had such little warning. She became sick within one day and grew weak  very fast.

I wanted to do some comparing to show you how much progress we have made. She has basically gained a third of her weight in just a year. Oh I should mention she was 34 inches tall last year. She is now close to 40 inches last time we checked. I am in awe really! Here are a few pictures I took of her yesterday. I had to do a Thanksgiving scene right? She is filling out quite nicely I might add. She weighs 30.5 pounds!

See her cheeks? I love them!

A bit too involved with this one.

Such a little lady. She loves to read and read…smart girl!

Well thanks for stopping by and keep praying that we keep our entire family healthy. This month is about giving thanks and we have plenty to be thankful for! God Bless you all.

~Terri

Halloween Happenings!

Ava was Po for Halloween. We fake trick or treated. She dressed and we took her outside and Lexis gave her candy in her basket. (Miss Lexis thoughts she was too old to trick or treat this year so her and her friend handed out candy.)

You can see by her smile she enjoys Halloween.

I made her a “fat suit” for under her costume since Po is hefty. It was adorable!

 

We threw a Halloween party at our house this year so Ava had to go to grandma Helmick’s during it. There is so much flu going around we can’t take any chances. We requested that if anyone was not feeling up to par not to come…I hate having to ask this but it is our life right now and will be for a long time. She did fine and we had a great party.

“Anyone want to play cards?”

My Mom and Dad were priceless! How many times do you get to see your Dad in a dress?

I was so happy that this year was spent here at home. Last year I dressed Ava up as a bee for a few short minutes in the PICU. She was still very sick. Can you believe what a difference a year makes? I’m so proud of everything she has accomplished! I think it is important not to dwell on the past but yet we still must be aware of where we have been.

Last night I changed her g-tube, while Brian was here because he needs to see how to do it in case I wouldn’t be home if it came out. It is not a fun thing to do. It is really tight. I small hole. It is smaller than a pencil width. As soon as it is removed a new one must be ready to be put back in. Ava screamed and was scared. For the first time there was a little blood. It stopped bleeding once everything was in. She is a trooper though. I can’t imagine having a hole in my tummy.

Here is Ava sporting her new tube this morning! She is a little busy watching Dora to care.

I thought I’d add pictures of the tube in case some of you have never seen one.  This first picture is her old one I took out last night. You can see her stomach acid turned it an ugly brown color. So you insert it in the hole un-inflated of course. Once it is in you fill the balloon with water. This holds it in place. It is a pretty simple concept!

Here is the g-tube inflated with water.

Usually I don’t change a tube that is working. (Some change them every three months regardless.) However Ava’s area around her tube was irritated so I wondered if a new tube would help. This tube was about 3 and a half months old.

I hope you all had a great Halloween. I know we did. Halloween is my favorite holiday. (If you couldn’t tell by the pictures!) Ava continues to be doing great. She is still 30 pounds and we are pleased with her over all. She loves to talk. (We call it using her words.) She is saying more things everyday and has even been putting two words together at al time. AND Usually the first word stats with “Mommy Pease” (Please) or “Mommy why”. I love how much she is growing and learning. We couldn’t ask for anything more.

Life is much shorter than we will ever know. Enjoy and be happy in it! Thanks for your continued prayers for Ava and our family. “We’ve come a long way baby!”

~Terri