Sunday, December 27, 2009
This was her first Christmas home....and to think Children's Hospital of Philadelphia thought Ava may have had to spend it with them. Nope we were home for Halloween!
This was her second Christmas. All was well with Ava. She was hospitalized in April of 2007 for pneumonia but got over that pretty good. She was such a happy baby.
Last year, her third Christmas was as you remember pretty rough. She was miserable and in this first picture you can see that clearly. Poor Ava...she is such a fighter!
THIS year was SO much fun. She loved every second of opening her gifts. She wanted more and more...not for the presents but for the pure joy of screading paper! We have been extremely blessed.
So here's to 2010. We pray that everyone stays healthy and happy. We certainly know all to well what is really important in life. Your love for God and your love and ability to care for family. Thanks for your continued support and your warm prayers. May God Bless you All!
Thursday, December 3, 2009
Hello to all Ava’s fans. She is getting over a cold….well it is the lightest easiest cold I’ve ever seen. It started with Emeline then the next day she had it. The cold started with a runny nose…but not, then it went to a dry cough that was also not very bad. I did have to stop her nightly feeds for about 4 days due to night time coughing and gagging. She is still too little to know that you can just cough and not have to throw up to get the junk out of your lungs…;) This all happened the day after Thanksgiving. I was worried because I know with Ava her weight is a big concern. SO far no weight loss.
We had a wonderful Thanksgiving. I just kept thanking God for all the Miracles He has sent our way. It is unbelievable when think where Ava was just 6 months ago. And now how well she is doing. Her brain is just blossoming. New words pour out of her mouth each day.
I have to share her recent “words”. If you ask her to please pick up her toys she replies with the saddest face, “I TIRED!” If only it was that easy, eh?
I’ve been especially careful not to take Ava out in public too much. BUT tonight we went to the Mall to see SANTA! We have been decorating the house and about talking about Christmas lately. If you point to Santa and ask who he is she says, “HO HO HO!” I laugh every time. We dropped Lexis and Emeline off at Tai Kwando then Ava and I headed to the Mall. When we got there he was on break so we walked around. I have sheltered this little girl SO much that I guess finally my eyes were open tonight. Normally she rides in the stroller. (Yes I get stares but I don’t even think twice about them!) She asked me if she could walk and I decided since we were only going to be there for a minute we would be okay. Oh I was wrong! Ava was touching everything. We went into Younkers and the trees were all decorated. Her eyes were HUGE. She touched SO many ornaments. I know this is just what kids do right? Well not my Ava….however tonight I put all fears aside so that she could enjoy being a three year old little girl. (AND I’m praying God protected every touch!) Plus we had antibacterial gel along…;)
SO finally Santa was in his chair. There was no one around so we got closer. (All my kids have been petrified of Santa.) Ava was almost drawn to him. It was the strangest thing. She was not scared…she did not smile but her eyes lit up. He was the most gentle person. His voice was captivating! He asked if he could read Ava a book. She politely shook her head yes. He started reading, “The Night Before Christmas.”
She got a little closer. Santa paused about halfway through the book and asked Ava if she would like to sit next to him in his big chair, without hesitation she climbed up all by her. I fought back happy tears….this was a Miracle.
“Precious, Precious, Precious!” I was so proud of her. My baby is not afraid of “Ho Ho Ho!” When we were leaving I told Santa about Ava and her many fights with life. He looked down and said these words, I will never forget, “God Bless this little one who is a Miracle.” How neat is that? He was the best Santa ever. He read the ENTIRE book to Ava…
Life is good. I can’t wait for Christmas. Ava is just going to LOVE this year. It started to snow this morning. (First snow fall of the year. It was huge “snow globe” flakes.) She was trying to catch each and every snow flake that fell. It was inspirational to see….kind of puts her life in perspective, things come at her and she doesn’t shy away she grabs for them. I am truly blessed. So much Joy is in my heart!
Thanks for the prayers and for your caring thoughts. We feel them daily.
Monday, November 23, 2009
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!
Thursday, November 12, 2009
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.
Monday, November 2, 2009
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!”
Tuesday, October 20, 2009
So I know I haven’t posted in a little while….that is because everything has been going so good. We are trying to stay out of the way of this nasty flu that seems to be hovering over the US right now.
I put her on the scale this morning before bath and she finally hit 30 pounds! I screamed so loud. You should have seen me jumping and dancing around. She just smiled. I told her this is wonderful she is eating and getting so healthy!
She also had a post surgical visit with Dr. Shilyanski today. I’ve been putting it off and they really thought it was necessary to see her. After all it had been two months. I was pretty excited about them all seeing how great she looks. I was very nervous about exposing her to all the sicknesses out there so I called before going in and they got us into a room fairly fast. We did have to wait for a while to be seen and then it was Dr. Pitcher that came in. He apologized that Dr. Shilyanski had an emergency patient and hoped I understood. Absolutely I did! I was sad though as I wanted him to also celebrate her wellness as he was the biggest reason she was better. I addressed my questions and concerns and they all were pleased with her over all progress. She just looks healthy….finally!
She looks So grown-up in this next picture.
Here is Miss Impatience! She lays in my lap.
Daddy helps to pass the time with funny faces! Notice who shows the tongue first.
I had to show you this picture I happen to capture. They have the very same look on their faces….priceless!
So on our way out who did we see coming down the hall? Dr. Shilyanski!! He came right up and started chatting. He was very impressed with Ava. I literally could have hugged that man! He means a lot to Brian and I. If you’ve had a child with many issues you understand that when a doctor “gets you” you LOVE them. They asked when we wanted to bring her back and I answered, “Never!” I will of course take her back but it feels great not having any MAJOR issues at this point. She is just busting out words left and right. Tonight she was having a hard time getting into her costume. I looked over and noticed she had her leg in the arm sleeve. I calmly told her that she must take her foot out that it was in the wrong spot. She says as though she is 16 years old, “A Mommy!” Brian looked up and we just started laughing and laughing! Too cute!
And this is her I hate going to the doctor look.
AND you must know that she is being “Po” from the “Teletubbies” for Halloween. Well just for fun. Little Miss thing will be spending this holiday inside our happy home. BUT I couldn’t resist the costume. She wears it many times during the day!
All in All a great day!
Is she not the cutest “Po” you have ever seen?
Love to you all and please try to stay healthy as we are REALLY trying hard to do! Thanks for your continued prayers.
Thursday, October 8, 2009
I had to share this video with you all. M iss Ava is so full of energy and life as you can see in this video.
Enjoy all life has to offer. And when you are feeling down grab a friend, sister, daughter, mother, father, son, husband, wife, cousin, grandma or grandpa and tell them they fill your life with joy! Make someone smile today. That was our goal…;)
Tuesday, October 6, 2009
Ava sleeping with her favorite blankie about a week ago. Rest my precious daughter!
Hello to ALL of Ava’s followers. Miss Ava continues to amaze us. She seems to learn a new word everyday. A few days ago she finally started calling me “Mommy” and using it to get my attention. Yes she said “Mama” before but never knowing what she spoke. Tears fill my eyes for the first several days of hearing her. A normal 3 year old would already say this many many months ago. However Ava’s medical world has been compromised on so many levels, so many different times. Her tiny body has had to stop some phases in order to heal the most important parts of her. So to finally hear “Mommy” it is like the angels are singing their beautiful praises right directly to me! God has His ways of making me know that ALL is SO worth ever second of this miraculous ride called Ava’s life.
So the last few weeks have been really hard on me. One of my good friends put it this way….(I hope she doesn’t mind. She has been my rock through a lot of this.)
“Terri, part of the reason for the heavy heart right now is because during the past year all of your energy and focus was on Ava and her health. Now that she is doing so well and is becoming a "normal" 3 year old, you have let your guard down and the emotions come rushing in. It is now time to allow yourself some healing time. Cry and rejoice...they CAN be done at the same time....”
She is exactly right. Ava is doing well and I have let my guard down. I don’t look in her eyes and see the pain and fear. I see a happy little girl So full of life. I don’t look at her as though she is sick but very well. I still worry. I think I always will. I still check and recheck her vitals at night. I still look at her sleeping and wonder if she is playing happily with her sweet beautiful friends. However I get really emotional as I remember last year at this exact time. She became sick October 4th. That day was so horrible…and the days that followed got worse and worse. Our worst nightmare came true.
Here is a prayer I wrote in this blog on the 14th of October. I was so broken about all that was happening.
"Dear Heavenly Father I come to you today, thanking you for being here for our family. Thank you for leading Ava in the right direction. Your goodness and love is evident on her little precious swollen face. It is so hard to wait patiently but in your word we know that you are the creator and that you can heal the sick. Lord she needs you to continue to touch her and make her better. Please help Lexis and Emeline feel our love from the distance that separates us. We know from the first time our family had to be separated that the girls took a huge emotional hit. Their little hearts hurt for their baby sister too. I ask that you calm their spirits and help them to deal with this in the best way possible. I also ask that you help Ava's swelling go down so that they can come and see her on Saturday. I don't want them to have to see her so abnormal Lord. I am amazed at the strength that you have sent to me. I'm feeling so much calmness that I only attribute it to your love to me. I love you and thank you once again for dying on the cross and and helping me see that you and only you are my personal friend and Savior. In Jesus name I pray, Amen."
This was also an older post when Ava was at her worst. I have learned so much from all of this especially this life lesson.
“This is such a painful thing to go through. Life doesn't stand still. It continues on. If I can relay any message to all of you it would be to stop what you are doing right this very second and thank God for what he has given you. We take for granted our health. We take for granted our wonderful family and friends. We are so busy with our lives that we don't stop to give God the glory for making us special. I encourage you tonight to stop and pray. Thank Him for making you, YOU! We are His creation and how miraculous are we?”
This was Ava on October 6, 2008. A day after her Emergency Seven and a half hour surgery to fix her total bowel obstruction due to her gortex diaphragm patch that got digested.
Ava can not look at herself like this. She will turn cry and run away. I too find these pictures so hard to see. The odd part was this was our normal. This is how we saw her day after day.
She has made so much progress and I am not trying to be a downer in anyway. I just need to work through all these emotions that I have hidden and held onto for so long. Do we know if this is the end of her problems? Absolutely not but are any of us certain of our futures? No we are not. Please pray for me and continue to hold Ava up in prayer.
She is just blossoming into this rare gem. She now weighs 29.5 pounds and is 39 inches tall! I am so excited about her growth. We are feeding her about 660-700 calories overnight. She gets it slowly over all the hours she is asleep and it seems never to affect her at all. She is an awesome sleeper. In fact for two nights in a row she slept over 12 hours!
Here are a few from the last few days. Ava has NINE scars just on her abdomen alone. This does not include scar of her arms and legs just her middle area. It saddens me to see her belly. I do know that each scar symbolizes God’s hands being laid on our courageous daughter and that is a beautiful feeling!
She loves to ride her trike. ALSo loves to ride it inside the house too! Good thing we have wood floors!
Ava also get speech therapy. She loves Sydney her teacher. Here they are playing “picnic”. Ava can not get enough “picnic” play. She will take things out of the fridge and put them on the blanket and think it is TIME to PICNIC!
Thanks for dropping by. We are so blessed by having three healthy girls. Life is great! Again hug those you love and whisper to them that you love them So dearly….they need you like you need them!