Day 849 - Syracuse

Ava has been doing great. Yesterday Ava had her last IVIG. Her IgG level came back as 733, which is good. We will be getting a blood test in July and August, and if her levels stay higher, we can stop the IVIG hopefully permanently. Her IgA which shows her immune system stats in the long run also went up. This shows that she shouldn't have a permanent problem with her immune system.

Today we went to GI in Syracuse, NY. We first went to the Feeding Clinic and the speech pathologist gave us quite a few suggestions. For example, a larger spoon, more real food like bananas, and mashed potatoes. She also suggested skipping stage 3. This is definitely the hardest part for Ava. She has been keeping most of her food down. We just sometimes have irregular spit ups. The GI doctor said that isn't reflux. We will also re-evaluate her digestion after she is off the vent, hopefully in September. We will go down in her Eryped med and then get another test done in Rochester.

Everything is going really great and we also got approval to go off the vent for 1 hour after Ava is sound asleep. Keep praying... We need it. Ava has a Lung Center appointment next Tuesday, the 5th.

Thanking God for Ava's amazing progress and praying for Ava to be off the vent and decannulated...

Day 835 - ENT

Ava had her ENT appointment this morning. We had to wait an hour to be seen and Ava was such a good girl. It's unbelievable how patient she is. The ENT saw her and gave us a prescription for the 4.0 trach, a 3.5 trach and a cap for the trach to be used once she is completely off the vent at night. He didn't even have me schedule another appointment, but rather told the receptionist that I will call her to set up the overnight hospital stay for decannulation! Amazing!!! Our dreams are coming true! Thank you God! Now, just to get her off the vent at night, stay healthy and get approval from Lung Center.

Lately, she has even been telling us that she needs to go potty and actually goes! She also lets us know when she has a wet diaper.

Ava now weighs 12.15 kg. We are giving her 200 ml 3x a day and 100 mls at 10pm when she eats her 6 oz of food. We are back to giving her the Pediasure at 9am, 12pm and 6pm which is what GI wanted. The 9am feed really seems to get in the way of therapies and I am concerned that it might affect how much she eats during the day, but we'll see.

Thanking God for Ava and praying for a great summer...

Day 832

 Ava got to go to Fantasy Island on Saturday and stop at a friend's birthday party. It was a really great day and we all had so much fun. On Mother's Day I got Ava to eat 6 oz of food and drink milk from a glass. She was so excited to be eating like a big girl.

I spoke to Lung Center today as I do every Monday and the RT seemed very excited that Ava should be able to come off the vent and be without a trach by Fall. I told her about how I scared the new night nurse by training her if Ava's pulsox drops and how to react. Of course not even 10 minutes after I told her what to do, the pulsox numbers dropped and the nurse thought that something was wrong. It was just the pulsox but she didn't understand how stable Ava is. Ava's RT said that hopefully we won't have to worry about nurses much longer since Ava will be off the vent/trach. We still don't have a nurse on Saturday nights and Sunday days. And of course those random times of call-ins or illness.

Thanking God for Ava's advancements and fun and praying for those Lungs to keep on growing strong and healthy...

Day 829 - Therapies

Today we met with Ava's therapists for her annual review. A year has gone by and what an amazing year it has been! She was laying on her back, unable to roll or sit up and now she can cruise on furniture, crawl all over the place and try to run while we hold her hands. She is also eating Stage 3 baby food now. We have finally made it past the Stage 2! Praise God! We are also working on her crunching on some puffs. If she can eat 6 oz. we will be able to go down on her volume of food.

Thanking God for a year and praying for many more years of joy to come...

Day 828

After the phone call with Lung Center the other day, I called our Pediatrician and discussed Ava with him. He also feels, along with ENT that she is doing great and it seems that she does not need a trach anymore. Of course that decision is based on her lungs and the Lung Center. I had to ask Lung Center a question about her ambu bag and I decided to ask the ultimate question "Is decannulation a word even thought about when it comes to Ava this summer?" The reply was "Yes, as long as everything continues to go well." Well, that was a major relief and exciting. We still don't have a sooner appointment, especially since the doctor is away for two weeks.

Thanking God for Ava's ability to breathe and praying for decannulation this summer...

Day 825 - another 4 weeks

Today we got some news that Lung Center wants to wait 4 weeks before they make any additional changes with Ava. That means no going off the vent at night. We are still off during nap time. We really don't know what it means. Does this mean they aren't talking decannulation this summer? Are they only going to go an hour off the vent at night every week? That means it would take 10 weeks which is past August to get her off the vent. Ava also needs to go down to a trach size of 3.5 from the 5.0 that she currently is on. We have to wait until her appointment on June 5th and she is not supposed to have any illnesses which includes asthma. Asthma is considered an illness to them. In our area, the pollen count is high and Anthony's even been having trouble with asthma. It's really frustrating because we know how well Ava did while she was sick and how great she is doing now. In order for Ava to develop mentally and physically, she needs to start experiencing the world, and if she can't get sick, it's a pretty scary world out there. Please pray for God's guidance. He is in control, but he certainly is giving me the will to fight for over 825 days for my baby.

Thanking God for Ava's strength and praying for more strength for all of us...

Day 824 - Ice cream

Today Ava ate her first ice cream cone. She has had tastes of ice cream but never held one in her hand and put it to her mouth. She knew what to do from the get-go. She wouldn't open her mouth much, but she would get some in and all over the place. It was really fun and messy.

Thanking God for these special moments and praying for Ava to be decannulated...

Day 822

Ava is doing much better and she is keeping her mixture of Pediasure and Pedialyte down. Her stools are still very loose but her lungs seem back to normal. We actually took her to the Albright Knox Art Gallery for a bit this evening. I was part of an art project where the art gallery randomly chose 150 people to be part of this painting. My response to questions and chosen artwork will be created into a 2' x 2' painting which will then be part of a much larger painting of all the 150 "people" panels. You may still be confused but it was very interesting and it was incredible to be part of a piece of artwork that will reside in the art gallery for years. I'm sure I will never have a piece of artwork hanging on the walls created by myself, but it's certainly a dream, so this little bit of me will be. Maybe someday one of my girls' artwork will be hanging on the walls...??

Anyways, back to the family being at the art gallery - Ava had a great time and even had a sucker that she watched her sister's eat and thoroughly enjoyed herself. The little things that she does that is "normal" now seems like such an incredible miracle.

Thanking God for times together as a family and praying for many more...

Day 819

We took Ava to see her Pediatrician today because she was throwing up. She has a GI bug, worse than her sisters had. We actually missed Lung Center as well today and can't get back in until June 5th. This is not good news. She is still on steroids until next week and her overall outlook is good. Her stools also are explosive and extremely loose. I'm not really feeling like this is God's plan, but rather an attack but we are moving ahead and Ava is able to handle being off the vent during the day. Her sats are around 93 and since we want her to get better faster we have been giving her O2 to help her at night. We don't think think it's Rotavirus like she had a year ago, but we are on top of things and hopefully no CPR will be needed like last year.

Thanking God for Ava's progress and praying she gets better fast with no other illnesses...