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...

Day 1042 - A year ago today...

If you look back to a year ago today, you will find that Ava came off the ventilator for 15 minutes. It was the start of her quick journey to being vent free. I remember Ava's doctor saying that a year from then Ava could be off the vent. I remarked that a year from now she could be trach-free. They laughed and I hoped (and prayed). Fast forward to now and God has granted our prayers. In addition to be vent & trach-free, we were told that Ava does not qualify for a special needs teacher anymore. Ava is "normal" or an average child. She is so much more than that but after being told that Ava would be severely mentally handi-capped and also being in the hospital for so long, Ava has surpassed everyone's dreams of her. I look forward to seeing God's plan unfold for her.

Today is also the last day that Ava has to take Viagra aka Revatio for her heart. One more medication is gone - Woo hoo! I am also going to ask her GI in the coming weeks to see if we can get rid of her Prevacid for acid reflux. How amazing that would be! She would only take her inhalers and vitamins!

Ava also has been up and down in her weight - 13.5 kg, to 13.1 kg to 13.15 kg. It's hard to guess how much Ava is eating but she is still on 600 ml of Pediasure. Our goal is for her to be fully fed orally by this summer and no long need the g-tube. She has some issues with chewing, her mouth gets tired, so she just needs to strengthen. Same thing with her legs. She needs to strength them as well. The physical therapist who came in to test her said her ankles were still weak and need to get stronger. We will be working on exercises for her since we fired the PT last week due to her scheduling issues and gossiping with the nurses. Ava's sisters really enjoy helping her "work out" and come up with activities to motivate Ava to work. Ava does go up and down stairs but we need to continue to work on those often.

Praising God for Ava's growth in a year and praying for Ava to eat and strengthen...

Day 1016 - World Prematurity Day

Ava didn't win the trip to Disney but thank you to everyone that voted! Hopefully we can make it there in the next few years. As soon as we get her prize package, we'll post a photo of that as well.

Thanking God for the past 3 years and the amazing results and praying for Preemies & their families across the world...

Day 1014

We met with Compassionet from Univera today. They are thankfully keeping us on their plan until the cold & flu season is over as well as Ava's surgery in the Spring. They have helped our family so much the past 2 years with art therapy for the girls, massages for Anthony and I, and much more. The nurse practitioner mentioned that Ava looked exactly like another little girl in Rochester who has Arnold Chiari Malformation. I have looked it up and I don't know how you can diagnose someone with that nor does Ava have any of these symptoms. I know that Ava does look like a child that has been on steroids but our eyes have an almond shape appearance almost like a child with Down's Syndrome has. I don't know if that is why people in the medical community like to diagnose Ava as having some sort of syndrome? It is hard to believe that Ava has come out of being a 24 weeker without any sort of issues, heck, I find it hard to believe. It's quite amazing. But then again, isn't our God quite Amazing? I can't explain it. I can't explain how I have looked at my daughter with investigating and open eyes, and not finding anything wrong with her. The gossip while we were in both of the hospitals was that "mom doesn't get it". I get it. But I knew (and know). I know that she is perfectly and wonderfully made. The only thing abnormal about Ava is how unbelievably happy, loving and smart she is. She is an absolute riot. I looked into her eyes a few weeks after she was born to see such a pure intelligence behind them and I felt peace. To live and be with Ava every day is such pure joy that is hard to describe. Our family is finally complete and at peace. And now we can breathe.

Saturday is World Prematurity Day and March of Dimes asks for people to wear purple in honor of that day. 1 in 8 babies are born prematurely. And speaking of which, a couple from our Taste of Buffalo family had twins born at 25 weeks. Please pray that they too may know the peace that has been given to us and that the babies grow strong and healthy.

Also Saturday is the day that the Hand to Hold organization announces the "Preemie Power" award winner. We got email saying we were in the running for the trip to Disneyland. What a blessing that would be for our family. Ava is the smallest preemie that is in the running as well as had the longest stay in the hospital. All our preemies are little miracles...

Thank you God for our delightful family and praying for continued peace...

Day 1008

Ava had a hard time last night with coughing. She did fine though but we called Lung Center in the morning and got her on steroids right away. Ava definitely recovers nicely with steroids but she still gets sick when her sisters do. Everyone is sick except for myself. Hopefully we won't have to go to the hospital for a tiny stay. Her sisters always seem more sick than she is. She is also eating pretty well. She is chewing and swallowing appropriately. She spit up last night once and that hasn't happened in quite some time.

Thanking God for Ava's ability to eat and praying that she is healthy...

Day 1001

We had a great time with Ava on Halloween. She was Wonder Woman. Our little Super Hero. After the first house she knew exactly what to do and was trying to run down the street. She was so excited to be walking on a sidewalk and seeing trucks and cars drive by her. It's amazing how little things excite her.

Today is the last day to vote for Ava to possibly win a trip to Disneyland. She is currently in second place. Thanks for voting and here's the link: http://promoshq.wildfireapp.com/website/6/contests/296773/voteable_entries/59726761

Thanking God for Ava's love and life and praying for Ava to chew and eat her food properly and to stay out of the hospital...

Day 997

Ava has been doing pretty well the last couple of days. She weighs 13.70 kg = 30.20 pounds. She is also climbing on the furniture and sneaking up the stairs all the time. She ate chicken noodle soup, squash and pumpkin ice cream last night for dinner. My little chow hound! Of course that doesn't happen at every feeding and she did spit up her lunch this afternoon. We are awaiting Hurricane Sandy, but thankfully we have a generator to keep her meds cold and her equipment running. Hopefully our nurse can get home safe tonight. Please pray for her safe journey. Ava is also talking quite a bit more and trying to repeat what we are saying. What a joy this is!

I just saw on "Preemie Powers" FB post that Ava is in 2nd place for their contest. Thanks for voting & here's the link to vote again: http://promoshq.wildfireapp.com/website/6/contests/296773/voteable_entries/59726761 We have until Friday to vote and you can vote every day. In case you didn't know, the winner receives a trip to Disneyland with their family. What a gift for our family that would be!

Since I have your attention, I thought it would be nice to start praying for other people that need some prayers. I have written about this young man before, but unfortunately he is still in a coma. He was hit by a car on his bike over a year ago. Please pray that he comes out of his coma asap without any brain damage and is able to walk, eat and enjoy the rest of his life.

Thanking God for Ava's life and praying for Ava's immune system to be strong and for Andrew to awaken to his mom and sister's loving smiles...

Day 990

I spoke with GI in Syracuse today and Ava did well on her emptying scan. Her tummy emptied for the perfect amount of time. We are now able to stop giving her Eyrped and hopefully she will continue to eat and keep down her food. 1 more med down - Yeah! It's so great. Hopefully she no longer has reflux and we can get rid of the Prevacid as well. She is also chewing much better and just loves her mac n' cheese.

Thanking God for Ava's progress and praying that she continues to eat and enjoy life...

Day 986

Today Ava ate cheerios. She did an amazing job chewing them up. In fact, last night Ava ate a hot dog and some mac n' cheese with her friends. All of a sudden now, she seems to be chewing and swallowing her food. It's an incredible miracle.

Ava had an emptying scan done on her tummy on Monday in Rochester. It was supposed to be an hour long scan, but the 50% of the contents of her tummy went through in a half an hour. We were able to go home quite earlier than expected and she only had to be scanned 3 times. We still haven't heard from GI about how it exactly went, but with the contents moving that fast, we are pretty sure it went well. Hopefully we can get off Eryped for that.

We have entered Ava in a contest for "Preemie Power" where she can possibly win a trip to Disney with your votes. Voting starts tomorrow and you can vote once a day. Here is the link: http://promoshq.wildfireapp.com/website/6/contests/296773/voteable_entries/59726761

Thanking God for Ava's amazing progress and praying for her to continue to eat and chew...

Day 981

Today we had a wonderful photo shoot with our friends from "Through the Years" Photography. They blessed us last year around this time with photos of our family. It's amazing the journey we have had in a year. A year ago, Ava was on the vent 24-7 and we were taking off the vent for a couple of seconds to take photos and put it back on quickly. Now she has no need for a vent and doesn't even have a trach! Amazing progress! Praise God! She was running around with her friends and just enjoying life. We couldn't be happier. Below are some photos. Enjoy and Thanks to Through the Years Photography!

Thanking God for friends and for Ava's progress and just thanking God today...

Day 976

Sorry for the delay in getting these posts to you. We have been very busy and we did manage to get sick the last couple of weeks. We got some good news today - Ava doesn't need immunoglobin infusions this winter, unless she is getting ill frequently. We found out they don't believe she needs the Synagis shots during the winter to fight against RSV, because although her test was negative, her numbers for the psuedococcal (I think this is correct spelling ;) ) showed that her body reacted. Her IgG numbers went up from 509 to 545 (this is still low for her age) and IgA from 20.9 to 21.6 (also low for her age). We still need to be very careful with her but we can also get out and have a little more fun than last year.

We did take Ava to Pumpkinville and she was able to stand next to the Pumpkinville sign that measures their height. It was incredible to have that experience when a year ago Ava was on her ventilator. Ava had such a fun time and has such a joyful laugh. She gives us all amazing joy.

Thanking God for Ava's laugh and praying for Ava to eat solids...

Day 930 - Going home without a trach...

Ava did it! She made it through the night without needing a trach and she breathed on her own! Can't believe I'm saying - Ava breathed all by herself!! Thank you God!

We did get a blood test for Immunology to know her IgG & IgA levels when we go there next week Tuesday. Ava was so funny this whole trip to the hospital. She smiled and waved at every one. Held her hand out to touch people, showed everyone her neck...

What a blessing she is...

Thanking God for the trach to be out and Ava to be breathing well and praying for her to eat well...

Day 929 - The day our dream came true...

So I'd like to say it was a huge extravagant procedure with Ava being surrounded by the most prestigious doctors when they took the trach out... But alas, it was her mama that took out trach and washed her neck. Anthony even recorded it for you to see. Exceptionally easy unlike how she came into this world. But Ava was so proud. She showed everyone that once her trach hole closes up, she will get her ears pierced. She showed everyone where all her body parts were and made sure they knew how smart she was. Everyone was grinning ear from ear when they came by her. If she does great through the night, we can go home.

Thanking God for our joy and praying for much more happiness and joy...

Day 826 - Possible Decannulation?

I got the call today to that Ava might go into the hospital on Monday for decannulation if there is a bed available in the ICU. There currently is, but if it gets busy in there, we won't be able to go. We will hear sometime between 8 - 9 am to get the news to go in.

In the meantime, here's a fun pic of Av and I...

Thanking God for our opportunities and praying for the future...

Day 916 - Happy Day at Lung Center

Anthony, Ava and I went to Lung Center today hoping for some great news. We met with Ava's doctor and at first we thought he was going to say no. Then he talked himself into it because Ava didn't need the vent when she was sick. Then of course she wouldn't need a trach. It was very surreal. We are very excited and so is Ava. Our Lung Center doctor is actually leaving in a couple months. He said that we won't be needing them much anymore. Ava's pediatrician is also an asthma specialist. He asked if we wanted to keep the vent for a bit, but Anthony said that we would have to come in if something was wrong with Ava, so let's get the vent out of our house. ;)

I called ENT as soon as we were in the car and the scheduler wasn't in the office today. She will be in tomorrow.

Thanking God for Ava's life and praying for her to be decannulated...