Day 577

Another great day especially because our night nurse came in. We were supposed to go to the tractor pull in Alexander and we have planned it all month. Unfortunately our truck battery was dead probably because a little munchkin left the door open. So because we were afraid our battery would be dead in the middle of a field, we decided to go into East Aurora and make S'mores at a cafe in East Aurora. It was fun and I have been wanting to take the kiddos for a while. It was great having Anthony with us all day since he didn't have to sleep.

Ava had a fun day. I tried to give her some jello and she gagged a little. Didn't desat but it was so funny watching her touch it. She would pull her hand back so fast because it was cold. She signs that she is "All done" with the vent. I am trying to train her to do it for the doctors when we see them next Tuesday. We are also completely out of brand new trachs. We only have the extra trachs that we cleaned. We will get another 4 next week, but if she pulls it out again, we'll have to use the "used" ones. I guess we are lucky that we get 4 a month from what I have heard.

I forgot to mention that we closed on the house in Buffalo on Thursday. What a relief! We were told on Tuesday at 4pm that we were closing on Thursday and that they were having a walk through on Wednesday night. So we had to get in there quick and get all the boxes and garbage out from our tenants that left it. We weren't expecting to get out that quick but hopefully we can get a bigger vehicle to fit all of us and Ava's equipment and nurse.

Ava weighs exactly 12 kg = 26.26 pounds. We have an ENT appointment this Thursday.

Thanking God for Ava's life and praying that next week's Lung Center appointment is the news we have been waiting for...

Day 576

We are so excited with Ava's progress it's almost unbelievable. Every day is amazing and I am so sorry I haven't been blogging more. We really can't wait to go to Lung Center September 6th, which will be the day after we found out we were pregnant with Ava two years ago. It would be such a blessing to be out of this situation earlier than we expected. She still has a hard time eating but she did really good with OT on Thursday eating "Cinnamon Roll" pudding. Unfortunately Wegman's was out when I went there on Friday. We bring her to the dinner table every day so she can see what it's like to eat. But the greatest part of our days this week has been when the therapist has said that Ava's is such a miracle and her growth is a miracle as well. And I of course have a big mouth and declare that it's God's blessings. The therapist doesn't comment but I really hope Ava's adventures have made people think about God and his love. Ava is still pulling her vent off all the time but she isn't desatting and it's wonderful not having to feel so stressed getting it back on. She is even standing on my legs a little bit and pushing with her legs. She got IVIG (immunoglobins) on Tuesday and it went very well. It will hopefully be the last, but we will go to Immunology on the 6th as well for a review. I can't wait for everyone to see her. She is certainly "Amazing Ava".

Thanking God for Ava and letting us borrow her from heaven for a while and praying for Ava to eat and be vent free...

Day 568

Ava has been doing so well lately. She has been pulling her ventilator off and by the time we wipe it and put it back on, she doesn't have any trouble breathing on her own. Her saturations are mostly above 95 and when she gags she doesn't desat like she used to. She also used to close her eyes and breathe heavy when the vent has been off to long (maybe 30 seconds or less) and that doesn't happen anymore. I have always heard that when a child knows they can breathe on their own they will keep taking the vent tubing off. They also can be doing it because it becomes a game with them. But her normal symptoms that used to happen, don't happen anymore. Praise the Lord! She has also pulled her trach out twice now on the nurses. That is not fun but she hasn't seemed in distress.

She is also signing quite a bit for us. It's awesome to see her communicate with us. She doesn't like it when we make a "moo" sound like a cow. She breaks into tears. It's unbelievable. BIG gigantic tears. Poor baby... Guess she doesn't like cows.

Thanking God for Ava's growth and praying for continued growth and peace...

Day 563 - Ava got a new GJ today!

Ava got a new GJ today at Strong Memorial Hospital in Rochester. It went really well and the longest party was getting respiratory to bring us an oxygen valve for her vent circuit. She went completely under and she did fight the sedation a bit but I warned them that it took a lot for her. She woke up 5 minutes after the procedure. I didn't get to see the old one or find out how much water was left in the balloon. I asked but they thought it was ridiculous.

Thanking God that everything went well and praying that Ava can be vent-free...

Day 561 - Ava walked in a walker!

We had a great day today! Ava got a walker from one of her therapies today and she started pushing herself back to move. It's so exciting. She doesn't put her feed down still when you hold her up - maybe a little bit more than before - so we didn't know how she was going to do with the walker. Her PT is out until next week so I can't wait to see her reaction.

We also are bringing her over to our kitchen table to "eat" meals with us. We give her a sippy cup and maybe some fruit puffs (which she doesn't eat). She actually throws both over the sides. But at least she's understanding that we "eat" and sit together.

Ava weighs 11.85 kg. = 26.1 pounds!

Thanking God for Ava's progress and praying for more success...

Day 559

Ava had a really good week last week. She works so hard with her therapies. They say that she is on "Fast Forward" and really working through the things she needs to do. She is trying to stand a little more. I gotta tell ya though - it is really hard dealing with people in and out of our house every day along with the opinions. We really have no privacy and two of the therapies made a comment to one of our nurses about why I wasn't there all the time and how come I can leave when they are there. I don't think they understand what nurses are for - they are there to be an extension of myself so that I can leave the house and take care of things and the other two kids. Another therapy actually asked if she should only come when the nurses are there, as if I can't take care of Ava... Do they think this way because I'm blond? What makes these people think that I am incapable of taking care of my child and that I know her better than any nurse or doctor possibly could? Don't they understand that the hours are based on how busy you are, not just how the patient is. Do they think that the parents are untrained?

In other news, Ava gets her GJ replaced at Strong Memorial on Thursday. We were supposed to have ENT but that is moved to September 1st. She will be put under for this replacement. Hopefully the next replacement will be a new mickey for her tummy.

We no longer have nursing on Friday and Saturdays until PSA (our nursing agency) finds another nurse. The one that was supposed to train on Wednesday and Thursday decided that she no longer wanted to be a home care nurse. Anthony and I split up the night shifts so we can be with the kids during the day.

Thanking God for Ava's strength and attitude to fight and praying for her lungs to grow...

Day 553

So our newest news is that Ava has been signing for a week. She can sign "Play" in sign language, "all done", "more", "mommy", and she is picking up more signs every day. I got to visit one of our good friends today and she was very unhappy that I wasn't there at bedtime. I spoke to her on the phone and she went right to sleep. Oh how much I love it that she loves me! The other day, she was unhappy on the changing table and I was getting her ready. I asked her if she wanted to cuddle and she can't exactly sign "yes" yet so I told her that if she wanted to, just sign "more" and she DID! My baby knows what cuddling is... She is also trying to sit up from a laying down position. She tries so hard and then she just starts wiggling to move.

Please pray for our friends - their son was hit by a car. He has a broken collarbone, contusions on his lungs and a fractured skull which has lacerated his brain causing swelling and bleeding and more. We all have seen a miracle for Ava so let's pray for this young man as well.

Thanking God for Ava's brain growth and praying for a miracle for Andrew and more miracles for Ava...