And a COLD strikes again

Well Hello Ava followers. I can’t believe Summer is finally here. Ava has been doing so well. She got over her last cold and then a week or so later Lexis got a really bad cold. Then Brian got it… then Emeline and then Ava. (I still have yet to get it.) Brian’s got so bad that when he wasn’t working he was in bed sleeping. I finally talked him into going to the doctor. He had an ear, nose and chest infection that almost landed him in the hospital. I’d been doing my best to keep Ava secluded as we KNEW it would not be a good one for her to get. (What cold is ever good?!) SO she got it. We pit her on steroids and Albuterol inhalers but she didn’t get any better. I took her to our local doctor twice within the week. The last time she prescribed an antibiotic. I called her Pulmonary doctor in Iowa City and they suggested continuing her steroid and was happy our local doctor put her on antibiotics. So day 7 of her steroids she finally started feeling better. I was so worried about her. We had to once again pull her from school and I was really sad as she missed the last few days of Kindergarten. She told me… “Mom don’t be sad for me I like being out of school.” Silly kid!

She has been doing so much growing. Her brain is just a little sponge. She’s lost 4 of her teeth now. She pulled one all by herself! And much to my surprise ON VIDEO! I actually just sent it in to America’s Funniest Home video. It is so cute and so funny. I had it uploaded to You Tube but they suggested I pull it as the more views it gets the less likely it will end up on their show. I was just shocked she pulled it out all by herself!

On May 30th we had a very bad wind/thunderstorm storm come through our neighborhood. It was terrible and did a lot of tree damage in our town… particularly in our neighborhood. Emeline and Ava were home alone. Lexis and I had went to get Supper and while we were gone it happened. When we drove back to our neighborhood we were shocked to find all the damage. Trees were covering roads. Large trees fell on houses. Photographer me, went exploring shortly after the storm and here is what I captured. (I didn’t take my best camera for fear the rain may damage it.) SO much destruction.

This tree just came up at the bottom and was tossed a few feet away. So odd.

Here is a large picture of the tree.

Our good friends own this house. It is a block away from our house. How does a tree this big just fall on a house?

Emeline and Ava were just fine and our house and yard were all intact. We were BLESSED greatly this day. Our town has cleaned up most of the damage. The winds were said to have been 85 miles an hour. Every street you turned on had a tree blocking the way. God was good. It could have been a lot worse. I don’t think anyone was hurt by the storm just a lot of damage to homes, garages and cars.

So we now start Summer vacation. I love that she won’t be exposed to so many germs. Now to get fully over this cold. Thanks for your continued love, support and prayers!

~Terri

Encouraging News!

 

Hello Ava friends! Ava’s been battling a very bad cold but we are on our way down the hill… I think! She got a runny nose on Friday night. She said her body ached and she just didn’t act like herself all weekend. I decided to keep her home from school as she didn’t look well. On Monday we had a beautiful day outside. I was doing yard work and she spent the afternoon outside with a light jacket on. (It was 72 outside.) That night she started coughing. She sleeps in a twin size bed by our bed when she is sick. If she’s not doing good I hook her up to the Oximeter Monitor. This lets me know her heart rate and also how well she is getting oxygen. Her oxygen levels would linger in the 92-94 most of the night but twice they sunk to 88. I would get up to see how she looked and if she needed a cough reminder I’d wake her and ask her to give me a good cough. She would. Tuesday morning I called our local doctor as her nightly destat scared me. She told me that her lungs sounded very tight and that she had a really bad left ear infection. She prescribed a higher dose of inhaler Albuterol and also a Adtivar inhaled disk. (This is a steroid.) She also suggested I start her regimen of Albuterol and Prednisone. We had already been doing the Albuterol inhaler but was wanting her to confirm tightness to start the Prednisone. She also prescribed Antibiotics for her ear infection. I told her we had an appointment tomorrow with Ava’s Orthopedic doctor for a Sine check. She told me if Ava was any worse overnight to see if we could get into see Pulmonary the next day. I assure her I would. Tuesday night was a repeat of the night before. I got little sleep as her monitor kept alarming as soon as she would get to 90% oxygenation levels. Twice again she dipped to 87. I had to get up and physically shake her and ask her to cough. This night she was much harder to wake. We’ve never had this issue before where you didn’t wake easily. She could have just been so tired from the cold her body was deep in sleep. However if she didn’t wake she would choke on her mucus and then that would send me in a panic. We woke early for her appointment. She seemed to be statting better and in a much better mood. By this time she’d gotten three doses of the liquid steroids, three doses of the inhaled steroid, two doses of antibiotics and many doses of Albuterol.

We made it to Iowa City for her spine appointment at 7:30 am. She was still coughing a lot so we masked her as soon as we got inside. Ava sees an Orthopedic doctor because of the increased risk of scoliosis due to her diaphragmatic hernia. And since she has a patch the risk is even greater. She did great with the new x-ray machine. It gives less radiation then the older ones. They explained to us that there are only 25 of these machines in the United States and they were lucky enough to get one. I’m so happy as little Ava has been exposed to so much radiation in her short little life. We never know what damage that will do later on in her life. I found a really interesting article about this new EOS device. http://bsdbuilders.com/what-we-have-done/news/new-x-ray-reduces-radiation.html

This machine looks like a closet. I think Ava thought it was going to move around her and she was a little afraid. We assured her she would be fine. Only Ava had to remain still.

She looked so cute in her little hospital gown and robe. It brought back some not-so-good memories for me though.

Although she didn’t feel well and she had a terrible cough she still had energy to joke and play around with us. The intern asked her if he could shake her hand and she told him no! We all laughed. Then he asked her if she wanted to wear a pair of gloves and her eyes lit up. She put them on quickly and he again asked her if she would shake his hand. She again replied, “No!” She’s a character… she reminds me of my Dad. Her favorite person on this planet of course besides her Mom!

Doctor Weinstein said that he saw no sign of Scoliosis and that her back looked really good to him. We always love to hear good news. He told us that he didn’t really need to see her any longer but I told him that I’d like a follow-up in two years if that was okay. He instantly agreed. I like to keep a close eye on her and that patch and what it could possibly do.

As soon as her appointment was finished we went to the specialty clinic to see if Pulmonary could work her in. They offered us an afternoon appointment. They wanted to do lung function test again before the appointment. I was a little nervous as she had done so much coughing. However she did well with it. We waited and waited then finally the nurse practitioner came in and listed to Ava. By this time Ava had been given two doses of Albuterol inhales so she was feeling a little better and her coughing had nearly diminished. I explained what was going on and the last several day with Ava and she told me that I needed to watch Ava and not so much the monitor. I got very upset inside. She didn’t know Ava nor me. She had not witnessed these weird choking/gagging and coughing episodes the two nights before. She asked me what I thought Ava would do if she was alone in her room. She felt confident that her brain would have sent a message that said to cough as her body needed more oxygen. I wasn’t so sure as she had so much mucus build up and she wasn’t waking even with me shaking her AND she continued to destat. I sometimes wish these “nurses” could experience my life. All the horrible things Ava and our family have had to deal with. She came home with an open abdomen, a wound vac and a central line due to obstruction and reherniation of her Gortex patch. I gave her fluids through her line not from her mouth. I gave her numerous antibiotics through her central line. I pumped her stomach through a small tube that ran from her nose. It was more work that I could even begin to explain. I watched my child almost die and you now I’m having to listen to a nurse tell me to “watch my child not the monitor”. Ahhh.. oh how I had to hold myself back. I prayed that God would help me get through that moment… and He did!

She listened to her lungs and she said their was no crackle. So off we left. I was just happy to know and be reassured she was probably on the road to recovery.

She did MUCH better overnight! I think a combination of all her medicines have helped boot this cold in the butt. Please pray that she continues to get better. AND sorry about some of the venting. I just get frustrated with medical staff that doesn’t listen and lumps me together with so many parents that don’t care. I CARE!

~Terri

Pulmonary Lung function test

Hello Ava friends! Hate to say this but... she's been fighting another cold. She had an appointment with the pulmonologist on Friday for her six month Pulmonary lung function test. Even though she had a bad cold, with the Albuteol medicines she scored a "normal range" result. We are just so amazed at what God keeps doing with this little Lady!

I made a little video of her test. The doctor was pleased at how her technique has improved. It takes a little time to be familiar with how to do the test. She improved quite a bit this time. (We practice at home!) The better the technique the better the results.



She is getting so big. She is now 43 pounds and is 4 foot one inches tall. She's growing better than a weed! She always follows their instruction and is smiling. It's wonderful though we haven't been to the University in seven months!

The Children's hospital of Iowa is under construction right now. It's pretty cool to see all the work they are doing.

The doctor is so pleased with how the cold regimen is going. When Ava gets a cold we start her on the Albuterol inhaler. Then if that stops working then we go to the liquid Prednisone. She stays on that until her cough is gone. Generally being on the steroid for about 5 days the cough starts to fade. She also gets pulled from school to focus on getting her lungs clear. They were shocked that she didn't need anymore steroids that what they had prescribed. When they are happy then I am happy!

She did very well with her test. We are so proud of her!

If you could please say a prayer that she can kick this cold. It started on Tuesday. It got worse and by Saturday night we were up pretty much all night with her coughing. Her stats drop to about 92 then she coughs and they go up slightly. Last night she did much better. Her oxygen levels stayed about 95 and she coughed a lot less. The steroids really do the trick. I told the doctor that those steroid for Ava is a Miracle drug. He assures us that less than a week dose doesn't cause immune depression. She's been out of school since Monday.

I went to Ava's school conference on Wednesday. Her teacher is thrilled that Ava is doing so well. The start of the school year we started an IEP for Ava. This simply means she has a "learning disability" and needs a little extra help. Since she's been born it takes her a little longer to learn things than the average child. However her teacher said that Ava is excelling and is a really good reader. She knows all of her sight words for Kindergarten and is moving onto the first grade words. She loves Math and is also doing well in all other areas of school. She does miss many days but she makes up her work at home. A few weeks ago the school took her out of her special help classes (with my permission) as they feel she doesn't need them anymore. This was HUGE to me. That meant that she didn't need that extra boost of help. She was learning with her teacher basically on her own. She was becoming normal". I love and hate that word.

She can't wait until next week for Easter. The excitement is growing. My parents always throw a large egg hunt. Oh the FUN!

As always thanks for checking in on Ava. We love your support, love and prayers. Keep them coming!!

~Terri

Sledding Nightmare

Hello friends. So Ava once again scares the living tar out of me today. We were sledding at my parents house and Ava and the girls were having so much fun with the snow ramp they had built, when Ava hit the bottom of it a little too hard. We heard her scream and start hollering for me. I had been taking their pictures and was at the top of the hill. I ran to her quickly and knew right away she was hurt. I asked her if she could lay back on the sled. She did and continued to tell me her back hurt bad. I called for my parents (who were standing on the hill) to come help us. I didn't want to move her as I'd been in a accident and broke my back about 10 years ago. It is a pain I will never forget. So I was pretty worried about hurting her further. We decided we were going to take her up to the house on the sled. My Dad, Mom and I carried her on the sled. We calmed her as we walked. I had this fear come over me and I began to pray. I tried to stay positive. We took her inside and she continued to say her back hurt. I made the decision to take her to the hospital.

(This was not the time she got hurt but a few minutes before her accident. As you can she they were having so much fun.)

This was right before we took her to the Emergency room.

My Dad and my brother helped me load her up into their vehicle. We placed her in the back still on the sled. It broke my heart and I was afraid of what was ahead of us. Once we got into the hospital everyone rushed to get her into a room. While in the room she started to tell me her foot had fallen asleep. This made me more nervous.

(This was at the hospital. She was still on the sled. Sorry for the picture quality. I was my phone camera.)

The nurse came in and she said the pain in her foot was much worse. She started crying. When Ava cries you know she is hurting badly. I started to massage her leg and foot as I thought maybe it had just fallen asleep. She said that did help a little. The nurse went right out and got the doctor. He immediately ordered xrays and a few minutes later we were headed to the xray room.

They were able to finally get her off the sled. I was extremely nervous but it went well. I felt so bad for her.

 

 

She's very familiar with xrays so she was at ease as the technician explained what she was about to do. She had about 8 xrays taken. They were very careful with her. I asked her how her back was feeling and said it was better. That made me feel a little better. She had to turn on her side for a few of the xrays. She did well with all of that... all the while I was praying.

She was taken back to the room and about 30 minutes later the doctor returned. He said she had no broken bones. He thought she had just sprained it. So hot and cold compresses throughout the day. I was so happy and relieved. He asked her if she thought she could try sitting up. She shook her head yes. He raised the head part of the bed. He said that if she wanted to try and move she could. He wanted to make sure she could sit and walk on her own before he would discharge her.

We let her do things her own speed. She sat on her own after about 5 minutes then wanted to get down to try and walk. She could walk just fine. Wow was I so happy to see her up walking. Prayers answered!!

As we were walking out of the hospital the ladies that signed her in were SO thrilled to see her walking out on her own. That warmed my heart that they cared so much for her.

As we walked into my parent's house my family started clapping and hollering praise for Ava walking. "Thank you Lord" was my Mother's words!

Ava decided she wanted some mac and cheese first. My family was all so happy to see her walking into the house. Her back is still very sore.

I'll leave you with a happy Ava as she enjoyed sledding but won't do this for quite sometime as she's very scared now.

.
There is NEVER a dull moment around here!!

If you think of it would you send a few prayers up for Ava. She's such a tough little girl. SO blessed as this could have been MUCH worse.

~Terri

Returning to Normal

Hello friends! I did a mini shoot of Ava this afternoon. We just love Valentine's Day and had to share this with you!

Ava's just now getting over the cold she had. She's been out of school for two entire weeks. I'm so thankful we have an awesome doctor that listens and allows her to get better at home. Ava's teacher and school are wonderful at putting together her work and understanding her complicated medical history. The school nurse is phenominal. I really appreciate all her help. Ava's head cold turned into a major thing. She was infected in her nose, throat and ears. I took her back to the doctor yesterday and her ear infection had come back with a vengence. So more antibiotics for her... a lot stronger ones this time. So back to school tomorrow and good thing it is only a half a day. She's not looking forward to going since she's been home so long.

I had a bit of a break down yesterday. I get very anxious about sending her back into all the germs. It's not so much the "normal germs". It's that bronchitis, Influenza A and B are still very prevalent at her school right now. I am always in fear that she will get one of these and her good lung can't handle it. I see her sometimes as she was. I did a poster for the CDH page (https://www.facebook.com/raisingcdhkids) to explain how I feel.

I don't ever want to see her like this again. Colds... very bad colds could put her right back here. I know God protects her and I must trust Him yet my humanly, Motherly instinct takes over and fears the worst. Her doctor reminded me that she's been handing colds pretty well the last few years. She borderlines on needing oxygen which makes me nervous. 

I read this verse today and felt God was sending me an reminder.

Do you not know? Have you not heard? The LORD is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom.  He gives strength to the weary and increases the power of the weak.  Even youths grow tired and weary, and young men stumble and fall;  but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. ~Isaiah 40:28-31

I'm feeling well too. I'm getting back to "normal" life. Thanks for your wonderful comments and emails. We are so blessed to have so many awesome family and friends lifting us in Prayer. God is so AMAZING to us! Please continue to pray that He gives Ava protection and that she will get back into the swing of school. We love and thank each and every one of you for the continued support.

~Terri