Immunology

Ava had an Immunology appointment today. The doctor wanted to put Ava back on Zithromax but knowing that her Pediatrician didn't think it was a good idea to keep her on an antibiotic and my gut was also saying no, I asked her if we could stay off of it unless she was getting sick throughout the winter. We don't go back for 6 months and once we get through this winter we should be seeing them only once a year.

Today she only weighed 26.6 pounds without shoes. We really need her to gain weight. She definitely can eat sometimes. She can eat a whole cheeseburger or grilled cheese. I guess we just need to feed her ice cream for a few weeks. I don't want to feed her unhealthy food but we certainly don't need to feed her in her gtube via a feeding pump. Also, when we do that she isn't hungry to eat orally.

Thanking God for Ava and praying for Ava's brain, lungs and body as a whole to grow...

Neurology

Ava had a neurology appointment today. We were hoping that it would be the last one she would ever need. She weighs 27.3 pounds and 37.5" tall with sneakers on. Her head is 45.6cm or pretty close to 46 cm, which is what she was measured at in February. We saw the nurse practitioner who was concerned about her head size. It's under the growth curve and it hasn't grown since February. Later today when I looked it up in my notes, she measured at 46 cm on May 31, 2012. So it has been over a year that her head has grown. We are going back in December to remeasure her head with her actual doctor. The nurse practitioner didn't even know that it's been over a year so I don't even know what she would think of that. She did have a CAT scan and an EEG not that long ago and everything was normal. So please keep her in your prayers.

Thanking God for Ava's life and praying for Ava to grow strong and healthy...

Trach hole closure surgery

Today Ava got her trach hole surgically closed around 8am. Everything went very smoothly. The biggest concern was after the surgery when she woke up. If she woke up crying it can cause her neck to balloon up with air. Thankfully she woke up peacefully in her bed and was pretty happy. A few times during the day she did need some meds to help with the pain. Her neck didn't balloon up but it was pretty bloody. The stitches will come out next week.

We haven't been able to get her to gain any weight but she eats as much as she would if she was getting tube fed. We can take the g-tube out as soon as we want to.

Thanking God for Ava's progress and praying for her to gain weight and grow lung tissue...

We are out!

After 14 days in the hospital, we were finally released from the hospital. Ava was still satting lower than normal and was junky in her lungs. After coming home, she insisted on playing outside and that actually seemed to get rid of her congestion. It's so good being home after staying in the hospital overnight all but 2 nights with Ava. Ava really wanted her mama and it was good to be with just her but we certainly missed her sisters. It's so scary how fast she went down and that we could have lost her. During this time I also had to design the Taste of Buffalo Poster, invites, table tents and more. I did actually get them done while we were in the hospital. Thank goodness for virtual workplaces. ;) It was nice to see all of Ava's past nurses and show them how far she has come. Unfortunately we won't be able to get the trach hole closed until after the Taste because they won't put her under after she had a serious virus. She did also loose some weight so hopefully we can get her back up.

Thanking God for Ava to still be here with us and praying for Ava's lungs to grow...

Day 1173

We are on Day 8 of being in the PICU of Children's. Ava's doing a bit better but she still is breathing harder than normal. We are hoping to get her off the nasal cannula flow tomorrow and go straight to O2.

I was able to sleep at home last night for the first time since Ava has been at the hospital. It was heaven! Her sister's though are very upset at not having Ava home with her. They keep looking at videos and photos of her and they are extremely sensitive.

She finally pooped today after a couple of days. She also needs to drink more so she doesn't need to get more IV fluids. She is eating a significant amount of food though. Everyone is amazed by how happy she is and how she lets people suction her nose or give her chest pt. Please pray we can get home this week and that Ava's lungs grow strong and she stops belly breathing.

Thanking God for Ava's life and praying that Ava's lungs grow strong and healthy...

Blue

Ava has been sick this week after getting a bug from her sisters. She was needing albuterol every 4 hours and was sleeping in later in the morning. This am I was starting to get nervous but I knew she slept in later yesterday morning, so I decided to go in and check on her. I walked in and she was laying at the end of her crib barely breathing and could barely move her head. Anthony had just went to the store and I couldn't get a hold of him. I ran downstairs and quickly grabbed her nebulizer to give her albuterol. Unfortunately nothing was helping and we don't have any oxygen in the house anymore. Anthony came home and quickly called 911. After waiting about 20 minutes the ambulance finally showed up. Ariana sadly asked if Ava was going to die. That made me so sad. I can't imagine what her sisters would do without Ava. My parents came for the girls and Anthony went to the hospital while the ambulance took a whole hour to get to the hospital despite that we are 45 minutes away. Ava looked better with the oxygen but her breath rate was extremely high and they were fearful she would need a ventilator. We were brought into the ER, they assessed her and about and hour later were put into the ICU. We couldn't find out what could possibly be harming her that much. They kept describing it as her lungs were so bad. After a couple of days we found out she had HMV (Human metapneumovirus) which is worse than RSV. It can put a normal set of lungs into the hospital. We didn't end up needing a vent but she did have this turtle shaped external vent on her for a day.

Thanking God for Ava's life and praying for her lungs to get better...

Day 1142 - Cardiology

We went to Cardiology for Ava's annual appointment. She had an EKG and echocardiogram done in the office today. The doctor said that her heart looked normal in both tests. In fact, he said that if was to look at those test and not know her history, he would have never known that she had problems in the past or was even on a vent. Praise God! We don't have to go back for 18 months and then that could be her last visit with him. The progress that Ava has made in over 3 years is certainly miraculous. I have been updating this blogs' photos from the early days and I can't believe what Ava has went through and how she is now.

Tonight in fact Ava was yelling to me to come upstairs and cuddle. Her sisters were laying on my side of the bed watching "Little House on the Prairie" and she was telling them to move so I could get lay there. Ava wouldn't stop and was demanding them to move. I don't think her sisters have realized the prima donna that they have created by always giving into her.

I spoke with the Nutritionist from GI this week and faxed her the 5-day food study. She said she was 2 weeks behind in analyzing patients studies'. She did say that Ava could just have a high metabolism. My poor girl eats until she can't stuff anymore in her tummy and she still doesn't gain much weight. She also said that they like to have a child not have anything going in their feeding tube for 6 months before they take the gtube out.

Thanking God for Ava's heart and praying for Ava to grow strong & healthy lungs and body...

Day 1133 - Pediatrician

Today I spoke with Ava's Pediatrician and gave him more up-to-date information on how much Ava is eating. We are also keeping a five day feeding journal which is extremely hard to keep when you have no idea how much she is exactly eating or drinking. We will send to GI for the nutritionist to review and calculate how much she is eating. But I can tell you that Ava eats more than any 3 year old I have seen. We also don't want to keep giving Ava so much "bad" food like ice cream and milk shakes all the time. If we did that constantly we could possibly end of with a child that has weight problems and thinks that is what people should eat. Ava is super smart and she learns so much every day. It's more important for her to love fruit and veggies than junk food that is high in calories. Doesn't healthy food grow lung tissue?

Ava's pediatrician has been fine with her weight and height progress at her January appointment but we are going to make another appointment for him to get another look at her. We will also go to GI probably in May or June.

Thanking God for Ava's ability to eat and praying for her to be healthy...

Day 1132 - Lung Center

Today we went to Lung Center with hopes that we were only going to have to go there maybe once this summer and we would be done. Instead we were told that she lost weight and she wasn't growing any lung alveoli. I'm not quite sure how she can't be growing lung tissue since she is growing and there isn't a definitive way to tell. But what I can tell you is that Ava eats a ton of food and is very healthy with no signs of asthma. I forgot to mention to them that Ava was sick two weeks earlier with vomiting. We also want to go down in QVAR soon since that is typically what the protocol is. So we are going back three months from now. They also spoke of testing her when she is 5 for her lung capacity. We are really hoping to not be seeing very many specialists once Ava has her feeding out. Ava actually fluctuates weight between 28 and 30 lbs. She was 28 pounds today. She also is 3ft tall. In addition, she never runs out of energy and pretty much is running or walking all day long.

Thanking God for Ava's growth and praying for Ava to gain weight and eat healthy...

Day 1119 - Immunology

Today Ava had her 6 month Immunology appointment. She has a new doctor that is just learning of Ava through her case history. Because the doctor is new, she doesn't want to get rid of her azithromycin until May when hopefully the cold season is past. Our pediatrician doesn't feel she still needs to be on it and that it isn't good for a child to be on long term antibiotics. The new immunology doctor also said that maybe we would get through this next winter and if Ava was healthy we wouldn't need to come to Immunology anymore. So we shall see if we can keep Ava healthy this summer except for a cold here and there (which I'd rather not even get that), then she can stay off azithromycin.

Thanking God for Ava's progress and praying for Ava to stay healthy and grow...

Day 1105

Ava has been free from illness now since October - Praise God! We feel exceptionally blessed. It took me a while to get rid of my little cold that lingered for about 3 weeks, but Ava never got any sickness from any of us. We went to the Pediatrician 3 weeks ago and he made a few changes with hopes of not needing to see so many doctors in the future. She is now off of Albuterol puffs 2x a day unless it's needed. Ava is also chewing her vitamins as well now. We tried to seek a nutritionist that would help us with her food intake and her Pediasure feeds but we still haven't found one that specializes in kids. She did suggest giving Ava 1/2 cup of ice cream instead of the feed. Ava hasn't lost any weight and she isn't currently receiving any supplemental Pediasure unless she spits up. She still has a hard time chewing and swallowing certain textures. We have gone over a month now without a Speech therapist and not one in sight as we speak. Ava does choose to say quite a bit. Sometimes she is hard to understand, but most of the time she says something that we can. Tonight she wanted to sing her ABC's multiple times. It's amazing that she is trying to sing. I wish I knew what I could teach her but we keep asking her to "use her words" and help her to mimic sounds. She is really great at watching you correctly pronounce a letter and tries to do the same. She truly is God's amazing blessing. I can't wait for spring and to take her on many new adventures.

Thanking God for Ava's amazing life and praying for her to eat and speak well...

Day 1090 - Remembering...

Tonight after I was looking through my drawers in my bathroom cabinet, I came upon the Litmus Paper tests that I purchased three years ago. I remember that time like it was yesterday. The emotions I was feeling, the unknown, the fear, but also the grace of God. God gave both Anthony and I such peace that I can barely describe. No medications would have ever given us that. I wondered if I would still feel that way and if I am still in that frame of mind with my walk with God. 3 years have passed and we are still unable to attend a church due to keeping Ava safe and healthy. What I do have is the memory that God is in control. We lived that and let God control what was going to happen to Ava. Nothing will ever take that away.

My friend wrote the following on her Facebook page:
"Sometimes things get rough...sickness, death, life's drastic changes and ya get left...empty, numb, overwhelmed by every little thing. Then someone or something comes along and reminds you of the God that created the universe is in your life and nothing is to big for Him...Yesterday's miracles flood in and remind you....remind you...He holds your every breath...just breathe, keep walking fwd and let Him do the rest. I was reminded of this last night and this morning....it brings so much peace. Nothing like the breath of a little one that just breathes and lets God do the rest....thank you for this reminder Ava...you are so loved!!!"

That's what I have to do, as well as every believer. Take hold of these miracles that you have seen, especially this miracle that most of you have been part of. Always remember that God is in control and has the best intentions for you. Jeremiah 29:11 - For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. It may not go according to YOUR plan, but God's plans are so much greater and filled with the greatest of love for you.

Someday we hope to travel and tell Ava's story. It seems her story is a story of letting God control your circumstances. I think that time is coming soon but we are not sure how to get started.

Thanking God for the miracles we have seen and praying for peace for all...

Day 1089

This weekend we were able to attend two terrific events: Meet the Buffalo Bandits with Stone's Buddies from Children's Hospital and the Harlem Globetrotters with the Starlight Foundation. It's amazing to take Ava to these events and be a family. We used to take just Alexandra and Ariana when Ava was in the hospital.

Most of the people we used to see at Stone's Buddies haven't seen Ava in a year or so. One family hasn't seen Ava since she was on the vent round the clock. There is a certain sadness too. While Ava has gone through an incredibly recovery, most of these families have not. I am sure it was hard to see Ava thriving while their children are in the same place with special needs. We almost feel unworthy to be called "special needs" now. I have seen that term thrown around loosely with other children and it has bothered me. I'm sure it must bother them as well. We are very grateful that probably by the time Ava is 5, that term will no longer describe Ava. But I so wish that we could somehow help these families or they too could experience the joy of healing.

So many friends that we have met with Ava have recently gotten RSV. Even a 5 year old that came off of the ventilator the same time Ava did this past year. Please keep that little girl in your prayers, she's back on her ventilator (she does still have her trach thankfully). Also keep us in your prayers that we are protected from illness. It's unbelievable how that virus can affect kiddos that are that old. Heaven forbid Ava would have to be on the ventilator again; this year or the next few.

Thanking God for family fun and praying for protection...

Day 1079 - Ava's 3rd Birthday!

Today was Ava's 3rd Birthday and we are on our way home from being in Florida for a week. All four of us girls went while Daddy was working. He got to have a little fun with us on the weekend before his birthday. ;) It was such a blessing and Ava had a great time. We managed to keep Ava healthy, while the rest of us got sick. She wore a mask on the plane the whole time like such a pro. We also forgot her feed pump and only had a 10ml syringe. She is supposed to get 600ml's of Pediasure throughout the day. The first day I got in 400 mls in her, but then after some discussion we thought maybe this was a blessing in disguise. She was hungry more. I did have her drink some Pediasure throughout the week. One morning alone she ate bacon, sausage and some eggs. She also drank milk as well. It seems as though she eats more than any normal 3 year old. We shall see how much she weighs when we get home.

We are so blessed to have 3 years with Ava. It was such a joy to take her to the beach and swimming. She kept saying "beach". Swimming can be difficult with the trach hole still being opened and the "waterproof" bandage not really being waterproof. Ava loves to swim though and loves to jump in. If I would let her she would jump in all by herself. We have a tentative scheduled surgery date for her trach hole to be closed on May 6th.

Last week before we left we received the approval to stop giving Ava Prevacid. She has been on this med practically since she was born and she has been doing great without it. What a blessing!

Please keep us in your prayers for Ava to gain weight and eat so we can get the feeding tube out this summer. Also pray for a successful painless surgery in the spring and to stay healthy.

Thanking God for 3 years of Ava and praying for many more...

Day 1064 - My three little ducklings...

Almost 3 years later, my dream of Ava walking out of Target with her sisters like three little ducklings following their mama; happened. If you recall from the early days, my story of feeling like Ava was supposed to be walking behind her sister's someday, while I was pregnant with her. This was the vision, that God gave me, that got me through all the hard times and why I just knew that Ava was going to live. The girls were just as excited about this photo as I was. Below is another photo of Ali dressing up Ava in a "Fifi" costume. Ava lets her sister's dress her up and when they aren't around is always asking for both of them. I also took her into Micheal's and let her walk around for the first time with me holding her or her hand. Believe it or not, she walked around and didn't touch anything. She fell on the floor on her bottom at one point, Ariana noticed and told me. I turn around to see her with her hands up in the air not knowing what to do because she knew not to touch the floor. She is very well trained by the germaphobic mommy. To say we are having fun, is an understatement. Ariana is taking gymnastics and she was practicing handstands against the wall. Ava walks up to the wall and puts her hands on the floor and starts trying to do a handstand! She even grunts like she is working so hard. Ava also enjoys going out in the snow which is the first time she has ever done that as well. The first day she cried so hard begging Daddy to stay outside. She is also eating pretty well except when she doesn't want to. Then she will gag and act like she can't eat. Smart cookie, except we aren't fooled. ;)

Thanking God for our life with Ava and praying for this joy to be never-ending...

Day 1063

Today we got the approval to decrease Ava's Prevacid to 1x a day. If she does fine without that dose at night, we can call in a week or two and they will approve for us to not have to give her the med anymore. Praise God! Ava's meds are now only Albuterol, Qvar, vitamins & Floride! Hopefully in the spring we can stop using Albuterol 2x a day as well. We also are having her drink 350+ of her Pediasure and whole milk instead of sitting for 2 hours in her high chair to get fed through her g-tube. She receives the other 250 through her gtube at nap time.

We go to ENT next week and in a month back to Lung Center. We actually are going to be getting a new Physical therapist and finishing up Ava's evaluations for transition out of early intervention. In two weeks we have her meeting with Alden school to go over how many therapists she will be seeing. She is also potty training but really doesn't care about being wet. She loves to clap her hands and have us shout with joy when she does go. It's hard to believe that she will be three and everything happened three years ago. It's amazing to see how God has been faithful to us.

Thanking God for Ava's progress and praying for Ava to eat and gain weight...