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...

Day 606

We went to get a blood draw today to see how her immune levels are to possible get the rest of her live vaccine shots. Then we had Cardiology and her doctor was extremely excited to see her. She had an EKG done on her heart and everything was great. The hole that is in the center of her heart is smaller so it's closing up. Until it's closed, it just means she can't go deep sea diving or flyer a fighter jet. I asked him if she wanted to, what happens? And he told me that he would go in and close it. ;) Hopefully it will close but he is very excited and doesn't expect to be seeing her after she is off the vent and will stop between the ages of 3-5! No long term treatment will be required. Praise God! We were so excited and very high on Ava again. Until...

We went to Developmental. We thought this was going to be a great visit because she was doing so much, including sitting up and signing and communicating. Well because she is either 16 months or 20 months, she is supposed to do so much more and she is (of course) not doing what an 18 month should. They only found her cognitive to be 13.5 months, but she does follow direction without any hand signals or motions. They don't even really grade her for using sign language. They also told me that she had brain bleeds and that she was crabby and didn't want to be touched while being in the hospital. What?! Did they have the right baby? All Ava ever wanted to do was play with somebody. Since when did she have a brain bleed? They said her upper trunk strength was poor but she is getting stronger and that they don't know if she ever will walk. That could be because of her brain. Kind of depressing but we know that our God does the impossible, right? Just look at Ava. They said they have seen worse brain scans, and the kids are doing fine.

In other news, Ava was watching me eat today and so I gave her a crouton to play with since she never really puts food in her mouth. And guess what happened? She put it to her mouth and tasted it! She didn't like it, but she knew where to put it!

Thanking God for his blessings and praying for Ava to walk, eat and be vent free...

Day 604

Ava is doing great. She came off O2 Friday morning and has been off since then. She is so happy and pulling her vent off as usual. We are supposedly getting a new nurse coming next week to work our weekend days. We are back to not having a nurse for Friday and Saturday next weekend. But if this nurse works out, we will have her on days so we can hopefully get some stuff done. Ava is on prednisolone for 5 days once a day for her cold.

Ava lost a bit of weight - she weighs 11.7 kg = 25.79 pounds. They said they want that to happen. But we don't want her to continue to lose too much.

Thanking God for Ava's progress and being able to handle a cold and praying to go down in vent settings next week...

Day 602

Ava seems to be back to her old self. She was bouncing in her bouncer yesterday and today. She still looked pale when we got home but she was so happy to see us. She snuggled up to my chest which she has never done before. I'm so in love with her! We are sick now too so I am afraid to come near her. It's so good to be home. She slept great last night so it looks as though she is on the mend. All of her therapies are canceled for the week. Monday we have to get her blood taken, see Cardiology, and go to Developmental. She is on 1/8 of a liter of O2. It looks as though we won't be able to go places again. No more church, no Christmas pageant for Ali, etc. Hopefully next year we can venture out or the year after that in the winter.

Thanking God for his blessing and praying for protection all year...

Day 600 - Oh the fun!

I spoke to the nurse and heard Ava was gagging much more and was very tired. She was up early so I thought that might have been the problem. Nope - that wasn't it. By 5pm she was on 1/2 liter of O2. I said she was getting sick and we had to call the pediatrician. Thankfully, Anthony was home for the funeral and after testing to see if Ava needed O2 (before calling the doc), she was able to be off the O2. He went to bed and around 10pm I was trying to call the nurse. She finally got back to me and said that Ava was in respiratory distress. The nurse was really upset and from what she was saying, it seemed as if Ava was going to the ER immediately. She couldn't get a rattle out of her chest, she was on 1 liter of O2 and her heart rate was 180 and breath rate ranged from 40s-70s. She couldn't get Anthony up but she wasn't knocking on the door. I was so scared at this point cause I wasn't there and couldn't assess the situation. Finally, Anthony got up and he called the pediatrician. The pediatrician said to go to the ER. The nurse was getting all of her stuff ready when we decided to call Lung Center. Anthony called and thankfully Ava's doctor was on-call and he was very calm and said it was just a cold. He faxed over a prescription to a 24 hour Walgreens. At this point Ava was up and happy and very smiley. Thank God. This was around midnight and I could finally go to sleep but was still praying like crazy. The doc said we didn't have to come home tomorrow either so the girls could enjoy Disney. Oh the "Adventures of Ava."

Thanking God for Ava and praying that she is healed and protected...

Day 599

Ali was really sick today and actually threw up in the lobby of our hotel as soon as we walked in. It wasn't much but this hotel isn't used to having kids because it's mainly for business since the convention center is across the street. She didn't want to show that she was sick and she seemed better so we went to the beach. It also didn't happen again. Funny enough, two years ago, when I was pregnant with Ava, Ariana threw up twice in Fl and we never could figure out why. It was even on different days. I think it's me. The craziest adventures seem to happen to me. And speaking of which...

We went to Cocoa Beach which is about an hour away. After getting Ali some medicine, we found the beach and were playing in the water. All of a sudden, I saw jelly fish in the water. I ran out and then we saw some all over the beach. That was the end of our beach fun. Especially after I saw red marks on Ariana's back and wasn't sure if she got stung or not. She didn't, so at least we got to see a jelly up close and personal. That is the homeschooling mom in me - that's what I have turned into. God always give my girls adventures with animals up close. Much fun for me ;)

Ava, Ariana and myself are still healthy... If something is going to happen, it probably will tomorrow.

Thanking God for our adventures and praying for Ava to be healthy...

Day 598

Alexandra started getting sick today. Sneezing and a runny nose. Tomorrow we go to Florida until Thursday am. I hope it's a great time and nobody gets sick especially Ava. We didn't realize Ali was getting sick until much late in the afternoon. Anthony has a trade show but he is coming back early because his brother-in-law passed on. He died of cancer - fighting it for two years. May his family have peace. So it is going to be me and the girls with a rental car and we are hopefully going to the beach tomorrow and Magic Kingdom. We told them that Ava wanted them to go on the trip because they were such wonderful big sisters.

Thanking God that we can go on vacation and praying that Ava doesn't get sick...

Day 593

Ava has been having some trouble lately. It started Sunday night when she gagged and/or coughed and started turning colors. I suctioned her but it still didn't help. We changed the trach which was gunky and then she coughed and the new trach came shooting out before we had the trach ties on. We thought maybe the vent circuit was pushing too much air in her tummy because it was alarming earlier. We changed that and I listened to her chest and I didn't hear any air moving in her lungs. I gave her two puffs of her albuterol and that didn't work so we gave her an albuterol nebulizer treatment. That worked and while I was giving her chest pt and the treatment, she fell asleep and we put her in bed. Her lungs except for the left upper lobe sounded clear. Her left upper lobe sounded not as good as the rest.

I spoke to Lung Center the next day and they said that after 6 days the change in vent settings wouldn't do this. We also got a new pulsox on Monday and it seems to be working and giving us more accurate numbers.

Today she had two episodes this afternoon where she drops her sats. One instance was her gagging the other wasn't. She dropped both times to the 70s but came up easily with bagging. We are now giving her Albuterol every 4 hours. She is doing better tonight and hasn't had any episodes. We don't know if she is having an asthma attack or ??? Both of our other girls had problems with asthma the first fall after they were 1. Lung Center said that a child with a ventilator doesn't get asthma, but I'm not so sure about that.

Our one of two night nurses (the only one who is full time), can't come to work for a while. Just found out about 4 pm tonight so I am doing a full night shift until 5am when Anthony will take over. Hopefully she will be back on soon. Please pray that will happen and we can also find more nurses. Our nursing situation is very draining and is probably our biggest problem.

Thanking God for Ava's lung growth and praying for protection and for her to get better in Jesus's name...

Day 590 - Ava went to Letchworth Park!

We had a great day and got to take Ava to Letchworth State park! We went with our homeschooling group and Ava kept reaching out to touch people's hands. Which made mama nervous and then I felt rude because I would wipe her hands after. But if you have went through your daughter having two rounds of chest compressions, you surely understand.

Thanking God for Ava's time with us and praying for many more fun times...

Day 586 - God's promises continue to come true...

Today was truly an amazing day. I will get started with our first appointment which was immunology. Amazingly, we were early but still had to wait about an hour to get seen. Ava fell asleep since she was up around 6am. She is such a good girl, I think she might no longer be a baby since she will be 2 in a few months! Anyways, immunology decided to still give her IVIG for at least 3 months and we can re-evaluate then. Since it's the winter months coming up, they also want us to keep her antibiotic (Bactrim) which supposedly doesn't harm her immunities. Her immunoglobins are now 638, down from the 760, but that still is good. The problem is one of the levels is at an 8 which is low but the good news is this level is the last to come up so they weren't very concerned. We had to rush the doctors because we had Neurology in 30 minutes and we were about a half an hour away (and we still had to load Ava and her equipment).

We had to wait for Neurology for over an hour. Ava was asleep again for this appointment. The doc poked her a bit to see if she had her normal reflexes and she didn't even wake up. We had her head measured here at 44.4 cm but just a few hours later someone else did it for Lung Center and found her to be 47 cm. So I will need to call Neurology and let them know. The doc also wanted a list of her head circumference every few months. Gonna get that together off this blog. ;) He said he is not concerned and I asked if "she is doing good?" And he said "really good." PTL! He also is taking her down to 1 time a day for her Keppra (anti-seizure medication) and we will go off it a month from today entirely. We still don't know for sure if she had a seizure but she has had no signs of one since.

After that we had a long break until Lung Center and I was so giddy with excitement. We went early and everyone was so excited to see her. Our pulsox probe (which detects the amount of O2 in her blood) was acting up and not accurate. They hooked Ava up to another machine to detect the amount of CO2 and the O2 saturations and she looked really good. CO2 in the 30s and O2 at 99 - 100%! I told all of them about how Ava pulls her vent off repeatedly and how she walks away in her walker away from the vent. While we were waiting, one of the other Lung Center docs, came by (and who probably doesn't know much of Ava's success) made a comment about this coming winter being hard and that we will need to get through the next 3-4 hard winters. At that point, I was kind of shocked, because I wondered if she knew something that I didn't, with Ava doing so well. The doctor came in after I spoke to everyone and he decided that we could go down in her pressure setting to 25. He did listen to her with his stethoscope when she was off the vent and he said that he could hear her air volume diminish to at least half. But after we went down to a pressure of 25 from 27 (which is the volume of air need to keep her lungs open) she did great and didn't have any change in her volumes or CO2. They decided to try 23 (which can be a final lung setting depending on the person) and she did the same - really great! So in 3 weeks if she continues to do well, we will have VNA come out and change her vent setting to 23. In 5 weeks we will go back to Lung Center and I don't know what's going to happen next. Just keep praying! God is working amazing miracles with Ava!

Thanking God for Ava's healing and praying for her lungs to no longer need a vent and she can eat like God has intended...

Day 584

We had a great weekend! Lots of fun adventures to tell you about. First she pulled her trach out on me again and Anthony was asleep because he took care of Ava during the night. Ava was in her walker next to our dining room table. I had to grab the trach across the room and put her on the table. She started crying because I don't think she liked being up there. It's amazing to hear her cry. This was the first time I heard a "real" cry and not just a little squeak. It gives me shivers and I get so excited to think that we could hear her someday soon. I had to get the lubricant out and put it on the trach and get it in. I don't know how long it was between figuring out the trach was out and getting a new one in, but it must have been at least a minute, and she still was pink. So amazing but still so scary. Please God let her be vent free.

Earlier when her vent came off when she was in her walker, she scooted away without the vent on her. She actually signs that she is "All done" with the vent. Hopefully she will do it to lung center. ;)

In other news, we bought a Suburban so we can drive around as a whole family. We were able to go for ice cream Friday night. Saturday we went to the park and took Ava on her first walk. She actually smiled the whole time and we also sat her in the grass. We pulled grass for her to touch and she even layed back in it. She loved it and it was so amazing to show her this at her age. I also had her touch an egg when I made some Apple Cinnamon bread. I had her crack it with me and stir the batter. She loves going places and enjoying new experiences. She is such an easy going child. God has blessed us so much with her and our other two ladies.

This past week we were also able to go down on her feed for her to eat only 16 hours a day at 53 ml per hour. It really helps to make her mobile and not be attached to a feeding pump. They also want her to slim down a bit and it might help her lungs not to have to work so hard. Did you ever imagine that a 1 lb. 2 oz baby was going to have to slim down? So funny. But we have been working on her legs quite a bit with her in her walker and her bouncers. She is also tired of playing with her toys. She goes through toys so fast. Anybody have some clean toys that we can borrow for a few weeks and give back?

Only a few days till all our doctors appointments. I can barely contain my excitement!

Thanking God for helping us and praying for incredibly awesome blessings this week...

Day 581 - ENT

Today we went to ENT (ear, nose and throat) specialist. This doc is really good and fast. He told us that if Lung Center goes down on her peep and she doesn't need the vent, we will go down in her trach size and she will breathe around it. She will naturally start to breathe out her nose because you can hear her breathe through her trach. He took the vent off and even put his finger over her trach and he said he would have never done that in the hospital. He was very happy with her results. She was acting a bit agitated but I don't think it was the vent being off but being in the stroller and wanting out. Even with the vent back on she still seemed agitated. We will be back in 3 months or sooner if the vent settings go down fast. I have no idea what Lung Center will do.

On her therapy side, she is really trying to stand now. We still have to hold her but she is planting her feet on the ground. So awesome!

Thanking God for this excitement and praying for her lungs to no longer need a vent...

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...