Day 641

We went to Endocrine today and Ava got 3 blood draws to see if she needs a stress dose of steroids if she is ill. They gave her a dose in her veins and took a blood draw before, at 30 minutes and again at 60 minutes to see what her cortisol levels are. Tomorrow we will find out the results.

Ava had another great day of eating. She is on 105 ml of food now and she eats 4 x a day. She only gagged around the 6pm feed, and no food came out and while she was in the car. She seems to digest the Peptamen Jr before the 30 minutes of the push is over. It's so incredible. This is such a miracle. We had another day of good feeding.  Today she ate some banana yogurt.

Thanking God for Ava eating and praying for continued success...

Day 640

Today was a miracle! I fed Ava 5 times today into her stomach. None of those times did she spit up the food. She also ate breakfast with us (pudding) and some milk from a slow-flow sippy cup. She ate for at least 15 minutes because she hadn't eaten since Saturday morning. By early afternoon I decided to call the GI doctor and give him an update. We decided together to keep the "G" in place and see how it goes. So glad we don't have to get a GJ tomorrow. She ate 2 more times today and did pretty good. We are supposed to feed her 100 ml every 3 hours - 5x a day. With her naps I don't think it's possible to get 5 feeds in. Tomorrow we go to Endocrine to see if she needs to continue stress doses of steroids if she gets very ill.

Thanking God for unexpected surprises and praying for Ava to eat and her cortisol levels to be high enough...

Day 639

Ava pulled her GJ out while Daddy was helping Alexandra after she vomited. Her GJ actually might have burst out but we are not quite sure. I was at a meeting in Williamsville and first heard about Ali and started getting ready to come home. Then Anthony called about Ava. We really didn't know what to do since we were told so many things. I called her GI doctor in Syracuse and had me put in a temporary mickey button that we got given to us. We went into the ER in Rochester to get a temporary G put into her tummy. They were really great there and had us out in 3 hours. Ava did so great, smiling and playing. Tomorrow we will feed her by "bolus" feeds, pushing 100 ml of Peptamen Junior with a syringe every 3 hours. I'm back to feeding my baby! We will return to Rochester to get a GJ on Monday. Hopefully all will go well!

FYI - Alexandra actually only threw up that one time and it didn't happen again. Fun times! ;)

Thanking God for help and praying for her not to need to be fed in her intestine...

Day 638

Today we met with Dove Medial, PT and the Early Intervention coordinator because we have been denied a kid cart. They brought in the wheelchair that Medicaid thought would be the best for us and it really isn't a good fit for us. The Kid Cart was so incredible and would really help us carry all of Ava and her equipment around. Right now the double stroller is so big and heavy. It really won't be able to go through the snow. We are hoping the therapies will be able to work on getting this done fast.

Ava has been doing great and is definitely back to her norm. Hopefully Tuesday we will be able to down in vent settings.

Thanking God for Ava and praying for us to have the kid cart to cart Ava around in...

Day 635

Ava had a wonderful day today. She is back to vocalizing and sticking out her tongue. I got her to sign "luv mama" and she signs for daddy too. She stood for 9 minutes total today. She has a little help but she's using her legs. We have to sing quite a few songs to get her to stand that long. Ava loves "wheels on the bus". She is constantly moving her arms for us to sing it to her. It seems as if the Prevacid was Ava's problem because she is having no problems with gagging now.

On the 31st, we will be going to Endocrine and they will test her to see how she is doing without steroids. We are also going to see a Kinesiologist to see how our water and the food she eats is being handled in her body. We will also see if there is a certain type of food that she will like and handle better than others.

I haven't been feeling too well lately and quite down. Don't know what's wrong physically besides being very tired and having some congestion and a minor cough. Hopefully Ava doesn't get it. I am behind blogging so I will try and catch up. We were supposed to have a family friend come and take photos for us for Christmas, but I didn't feel good enough on Sunday for her to come. Pray that we have some nicer weather again (and Sunday was so beautiful).

Thanking God for Ava's strength and praying for strength and for Ava to be off the vent...

Day 632

Ava was able to break her trach today. She broke it so the one side of the trach where the trach ties attach, actually broke off. Unbelievable! I have asked around and I have heard from some nurses that adults don't even do that. Physical therapy also had her trying to crawl by moving her legs and arms for her, but she was using all her strength - that SuperGirl! (cue the music...)

We don't have a nurse tonight, so Anthony and I will be with her all night. The good thing about doing nights is, we really see how she acts. In two weeks we won't have nursing both Friday AND Saturday night.

Thanking God for Ava's strength and praying for Ava to breathe on her own...

Day 630

Ava has had a low temp most of the week and got her shots yesterday for DTP, Hepatitus A and flu. She hasn't had any extra secretions but has been very gaggy. We thought she might be having lung troubles or was sick but we just found out today that her prescription from Rite Aid was wrong. We found out that only 15 days of the 30 day supply of Prevacid we receive is actually good. So our poor honey has been having really bad acid reflux. She has been gagging, her O2 saturations have been all over the place and no wonders why we have been having troubles with her tummy every month - 15 days of every month she has been home (6 months) her Prevacid hasn't been any good. To make matters worse, the only reason we found out was because they had incorrectly filled the prescription to half of what the dose was going to be on the label. They wouldn't believe myself or the nurse that it was filled incorrectly. I went in and after showing him, I asked why the medicine had written on the bottle "do not refrigerate". He looked it up and said it definitely needed to be refrigerated. After looking more into the med, he called and stated the med was only good for 15 days and we had been getting a 30 day dose. Ava has been in so much pain every month and now she hasn't had a good dose of Prevacid in 19 days.

Hopefully with getting the med correct now, we will have much better months and not taking days of speaking to doctors to figure out the problem.

Thanking God for answers and praying for help and healing...

Day 625

Today was a great day for our family. Our friends Steve and Jess Bermel got married after 8 years of dating. The best part was both Alexandra and Ariana were in the wedding. They had the most wonderful time and were so well behaved. They walked down the aisle throwing rose petals and sat through the whole service very quietly.

Later that night at the reception, though, I found out that Ava was having some breathing problems and had a temperature. Never a dull moment, huh?! Not sure what she has a hopefully it will go away. Her temp was down before we had to leave the reception.

Thanking God for our friends and the fun we had and praying for Ava to be healthy...

Day 621 - A day that was a gift from God!

Today we went to Lung Center. We figured they would probably go down in her vent settings to a peak of 23. It is such a great time to go in there. We were there just a month ago and Ava is already doing more things like standing and her volumes on the ventilator and incredible. If they continue to be high, they will have to go down some more! In two to three weeks, depending on how she is doing (no colds) we will go down on her peak to 21. We will go back to see them in two months. The doc even said that "one of these days, we'll need to go down on her peep" which is how the bronchial malasia (lung disease) makes her lungs collapse. Adults are around a peep of 5 to keep our lungs open (depending on the person) so they just don't collapse shut and not open when you take a breath. If you recall, hers was also "floppy". The doc said that she will probably not be off of the vent by the time she is 2, which is only in January anyways (and our next appointment is in December), but that if everything continues to go well, we should probably see her off of the vent by the time she is 3!!!!!!! This is news that we have been waiting 621 days to hear! What a gift and a blessing! God is erasing the doubt that Ava will never be off a ventilator. The docs only other concern was her heart and I told him how happy our cardiologist was with her heart.

So, we should probably start saving for Ava's big party when she is off the ventilator and trach. Oh that happy day that will be...

Ava weighs 12 kg again = 26.46 pounds, length - 31.5" = 80 cm, head circumference - 45.5 cm.

Thanking God for good news and praying for protection from sickness for our entire family...

Day 620

We had a great weekend with Ava in the beautiful sunshine. We took her to a park, Darien Lake, a picnic and to Pumpkinville. She loved every minute of it except for the corn shooter at Pumpkinville. She was so scared and crying and pulling off her vent as well as trying to pull her trach out. Everything else with Ava went smoothly.

We are looking forward to Lung Center now and showing them how good she is doing as well as how fast she got over her cold.

I would like to ask all of you again for you to pray for Andrew who was hit by a car on a bike a few months ago. They had a get together tonight for prayers for him because he has yet to regain consciousness. It's been a rocky road for his family and we all know how much prayers mean. Prayers got Ava to where she is today and please pray for Andrew to awake in perfect condition to be again how God created him to be.

Thanking God for his love and praying for Ava to be able to breathe, eat and walk (and run to her mama)...

Day 615

We got the results back from her blood test two weeks ago and the results are great. Her blood was taken just a few days after she had a cold and her immunoglobins went up to 714 and her other number which was 8 and they were concerned about, is now 14! Yeah! She still is unable to get a live vaccine but we found out she hasn't had DTap so we will be getting that as well as a blood test afterwards to see if her numbers are where they should be. Otherwise all is well! We have been noticing the volume of air that she has, has increased to ver 200 ml! We used to see less than a hundred. It definitely means her lungs are growing. Can you imagine if a year from now, we are no longer on a vent? What a blessing it would be!

Thanking God for the gift of Ava and praying for continued growth and for Ava to be a normal child that can run, play and eat...

Day 613

Ava is doing great again. We have a Lung Center appointment next Tuesday. Hopefully no one will get sick although we have been around so many people that have been. When we go next week, they will hopefully go down in settings to 23 peak pressure. She is also off Keppra for seisures on Wednesday night - that will be her last dose. Another med gone! Woo-hoo! We are also only giving her the Viagra for her heart three times a day now for 4 mls! Yeah! Love not giving so many meds. She will only get 2 meds at bedtime (not including her puffers).

Ava went up in weight to 11.95 kg = 26.36 pounds. Getting back up there again! She also is really using her legs and can stand with a little assistance. She is still only eating very little but she loves to eat with us and always is the first person at the table to put her hands together to pray... That makes my heart melt. What a gift she is!

Thanking God for Ava's growth and praying for her lungs to be healed...