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... 

Day 549

Ava had Feeding clinic today and they said we don't have to go back until we actually get her swallowing food. Once that happens we can get a swallow study. While we were there she actually ate and played with a few bites of apple sauce. She loves to prove me wrong, right?! I told them she had a taste aversion and she goes and enjoys some applesauce! The speech therapist just told us to let Ava have fun and because Ava has such a good time with eating and is happy, she should eventually be able to eat.

In the meantime, I am giving her some apple juice in a sippy cup. She did take a couple of sips, didn't gag too much but she's really not that interested. Just like in standing up... Please keep the prayers coming, we have so far to go, but every day we get to see the miracle of Ava.

Ava weighs 11.6 kg = 25.5 pounds, head- 44.5 cm = 17.52", 29.75" length.

Thanking God for Ava being here and praying for her advancement to be a normal and happy child...

Day 545 - Ava is 18 months old!

Ava's made it to a year and a half! Praise God. She is almost to year two that the doctors said would never be. Oh how exciting the day will be when I walk her into NICU at Sister's! Nobody should doubt. Believe and miracles will happen! Sure, stuff happens. There is sin in the world but our God wants to bless us. 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. I remembering waking up and thinking this verse. It has gotten me through those horrible early days... Doesn't Ava look so good? She has come so far.

Thanking God for Ava's year and a half and praying for 90 more great years...

Day 541

Ava is no longer on O2 anymore. It definitely seems to have been her tummy. Her IVIG went well yesterday but we did find out that Ava's digestion is slow. It's only at 25% when it should be 50% or more. So that is the reason for all the problems with gastric juices. They are going to put us on a med to help it go faster. The med may cause some cramping and loose stools but hopefully that should go away. In 3 months we will go back for another gastric emptying study and see how the rate is then. We will also be getting a new GJ in Rochester since Buffalo hasn't been concerned about changing it in 8 months. Syracuse recommends doing it every 3. Our GI doctor doesn't think the J portion of it isn't blocking her to empty her tummy. She also didn't aspirate or reflux which is really good news.

Thanking God for Ava getting over this and praying that her tummy situation is fixed and becomes normal...

Day 539

Ava had a fine night after she desatted to 72 at 11:30 pm. The nurse bagged her and we put her O2 up to 1 liter. She gagged a couple of times today and turned a few colors but nothing to horrible. She was belly breathing quite a bit. I spoke to the doctor today and he wasn't overly concerned with the weather being so hot and air quality not being great as well as she was out for two days. We are just giving her albuterol every 4 hours and she is on 1/8th of O2. Right now she is satting 99 and seems quite happy.

Physical therapy came today and was really happy with how she was standing in her jumperoo. They even noticed her releasing the toys easily and playing so well with her new toys. It is so amazing. So overall it was a good day. Hopefully nothing will happen during the night. She just woke up a little but not in pain.

Ava weighs 11.35 kg, length is 77 cm, 45cm is her head circumference.

Thanking God for Ava's strength and growth and praying that she doesn't have to go back on steroids and whatever is going on will go away...

Day 537

Ava had her scan yesterday and everything went great with that. Last night though she woke up desatting and the nurse had to bag her twice. Not sure what is going on but she is not herself. She also sounded wheezy and we had to give her 2 puffs of her albuterol and a nebulizer treatment of the albuterol as well. She wasn't her normal happy self. We don't know if it is because she was out two days without humidification..?? She did have her HME's in line. She has no fever but she does get wheezy suddenly and drops her sats. She also wakes up after being sound asleep and she is in pain. She is able to come off O2 sometimes so the doctor says this isn't happening because she is sick. Please pray that we get some wisdom and fast... I don't want to have to take her to the hospital tonight.

Thanking God for Ava being here and praying that she is healed...

Day 535

We went in for Ava's scan today. It went really well although she did gag up 10 ml of the 70 mls of the food and dye mixture. But I think it went good because she actually spit up during the scan and I don't believe it showed any aspiration in her lungs. Yeah! But I won't know for certain until next week. She even fell asleep for 45 minutes of her hour long scan. We had to come back at 2:45 pm for another 5 minute scan. Tomorrow we have to go in again for about 20 minutes.

We used the Farrell bag like how it was created without using any IV tubing and she seemed to be doing ok with it (to empty out her gastric juices). She was a little more gaggy then normal.

Thanking God for Ava's patience and praying that we can feed her through her tummy...

Day 534

Ava had a good day but she was up at 3am and up for the day at 6am. The nurse gave her a puffer of Albuterol around midnight but I think it was just her pulsox acting up but who knows. I tried to get her to eat again tonight but she gagged as soon as she had the taste of the yogurt in her mouth. I worked with her on picking up the fruit puffs and seeing Ali and myself eating them. She was very interested but didn't put any toward her mouth. Please pray that she can eat. This is much more difficult than I thought it would be. Tomorrow is her gastric emptying scan in Rochester. Please pray that this goes well tomorrow too. We go back Friday morning again. I did weigh Ava again and her weight was much higher: 11.25 kg.

Thanking God for Ava's growth and praying for her to eat, stand and breathe on her own...

Day 532

Ava has been having a great time. So happy and playful. She has now been off the steroids a full week. She only need her albuterol puffers for about 3 days one additional time in the afternoon. Lung Center said we could stop the Atrovent puffer today! Yeah - another med gone!

We got a Jumperoo from physical therapy on Friday, and we have been working with her in that. She did really great today. When PT came by today, Ava sat in it and we helped her bounce for about a half an hour.

We weighed Ava tonight and it said 10.2 kg. That would mean she went down from the 10.8 two weeks ago. She may need more food... This week Thursday we go for her "Gastric emptying scan". Hopefully that will help us to see if she aspirates as well as refluxes. We are still having trouble getting her to eat easily without gagging. Please pray that Ava can eat.

And Ava is still breathing room air - it's been over 2 weeks now! Praise the Lord! So thankful every day for the gift of Ava (as well as my hubby, Alexandra and Ariana). What gifts they ALL are!

Thanking God for Ava's successes and praying this scan can help us figure out her tummy situation...

Day 526

Ava had a good night and didn't need any extra puffers for her lungs. She had three therapies come in today so she was quite exhausted by the third one. And the third one was meeting her for the first time and she was gagging like crazy and lethargic. Of course after they left she was so excitable the rest of the day. Physical therapy is concerned about her leg muscles and that she is turning her feet in a little bit when she stands. As well as she lifts her legs up. She went and bought Ava some high-top sneakers and hopefully that will work before we need to get orthotics. Please pray that Ava can strengthen her legs and learn to want to stand and can easily stand. The physical therapist is also going to find us a bouncer or a walker for her to stand in because her exersaucer is a little tall for her short little legs.

The lack of steroids seems to be going well but she did need another puff of her albuterol inhaler this afternoon. Hopefully it was only because she was gagging so much and she had more secretions because she went outside on the porch. Speaking of which, she sat under an umbrella outside for at least an hour and a half just playing and happy as can be watching her sisters. She didn't mind the wind at all and would smile at her sisters while she watched them run.

Thanking God for progress and praying that Ava can outgrow her gagging, can stand and no longer need a vent...

Day 525 - Steroids

Ava went off her steroids tonight. Please pray that it goes well and there are no signs of her needing them. It would be such a blessing for her little body. Maybe her face could actually not be as round. This week is the start where we will be getting continuous therapies coming in from 2-3 times a week for an hour each time. This is also the first weekend I will be away overnight and Ava is home without me. I will be at the Taste of Buffalo presented by TOPS which I volunteer on the board for all year round. Hopefully all will go well. I have probably only gone 2-3 days without changing Ava's trach ties or giving her meds to her at night since she's been home. Not that the nurses aren't capable, but I just like having the control and knowing how it's going.

Thanking God that I can go away and praying that Ava won't need the steroids...

Day 522 - One week today

Ava has now officially been off oxygen for a week. And for those of you that are confused - she is still on the ventilator but this means her lungs are getting stronger and hopefully she will be off the vent. Only God knows when that will happen, but our family dream is for next summer. So keep praying!

Monday she will go off her steroids and if that goes well she will also be off her Atrovent puffer soon after. Less meds - Yeah! It is so exciting! Just a week ago we thought it would be a couple of months for her to be able to last without oxygen for 24 hours.

Thanking God for Ava's lung growth and praying for more growth... and more... and more...

Day 518 - More Good News!

Ava had her Endocrine appointment today and we have more GOOD news! The doctor wants us to go off steroids next Monday! No more 'roids! Praise God! We are able to go down to a 1/4 tablet and then next week, if all goes well, we can go completely off unless she gets sick. We don't have to give her a stress dose if she just gets a cold. We will have to wait a couple of days after to go off the Atrovent puffer. She hasn't been off the steroids for a very long time probably since she was a couple weeks old. I really wonder why the doctors at Sister's didn't put her on them right away? They made them seem so risky (which they are a bit), but the value totally outweighs the risk. I am sure I will find that out in the future. I sometimes wonder if there is something we could have done differently. We still don't know why that left lung has so much trouble. But this journey isn't just about Ava and our family, but a journey for us all. If a few friends and family get some help from this, then so be it. At least our lives have really meant something and made God happy.

The other news is the Cardiology doctor told our pediatrician that it's ok for Ava to live her life and be under 95 for her O2 saturation on her pulsox. He didn't bat an eye when he said she could be at 90% and he even said if she was 89 when she was asleep he didn't have issues with that either. I will have to have him talk to Lung Center to make sure they both are on the same page. She is now 3 days without O2! Yeah! She is asleep right now and she is at 98% saturation, ok, make that 99% (out of 100). Awesome!

Ava weighs 10.8 kg = 23.81 pounds. Length 73.9 cm = 29.09 ".
 Everyone is so happy that for 8 1/2 weeks Ava has been healthy! Her new record!

Thanking for this wonderful time and praying for continued success...

Day 516

Today we had a little party for Ali's 6th birthday with just her cousins whom she loves to play with. We are still too afraid to have any other guests, so please don't feel left out. Once we get through this winter and Ava is 2 1/2, we can maybe feel a little bit safer. The other part is I am so anxious when anyone is here because I don't want her to get sick and need chest compressions. I really don't want to be back at the hospital with her. The longer we away from being admitted the happier I am. Although going lately to see the doctors have been pretty awesome. Ava has been off oxygen for 1 day now. So incredible. I was hoping for it, but I didn't even think it would happen that fast. I love when God surprises me even beyond what I am hoping for! Today we were able to put Ava in her high chair and sit her next to Ali and Ari so she could be a part of Ali blowing out her candles. It was so great to have the three sisters and their cousins all together. These times especially that I don't have to go to the hospital every day, is something that I have hoped for.

Thanking God for our wonderful family time and praying for many more family and friend gatherings with everyone healthy...

Day 514

Today we went to a GI doctor in Syracuse. We found out a lot of information. Ava does weigh 10.6 kg = 23.37 pounds. We should be giving her Prevacid in her "G" port (stomach) because when there is a flair up of reflux, the prevacid that has been absorbed in the stomach will go into action. We have had many arguments about where that is supposed to go so at least that is solved. This doctor was extremely knowledgeable and explained everything to us thoroughly. He is going to have Ava have a "Gastric Emptying Scan" which is a little different than the scans she has had in the past. This will determine if she aspirates from refluxing. After we determine this and she how the scan is we can decide if we can go back to feeding in her stomach and if we can go down in the hours of feeding and eventually go to bolus feedings (like how she was being fed from birth and a year ago.) We also spoke with the nutritionist about the Peptomen Junior and she said that if Ava was eating breast milk and baby formula from the get go, she should have no trouble with Pediasure (which isn't a broken down feed). Peptamen makes Ava's stools extremely smelly and sometimes very loose. I told her it was decided in under 24 hours that Ava couldn't handle it. That was also during the time that she was getting the med Miralax that cramped Ava up. She said it should have been evaluated much longer like at least a week or more. The doctor went down to 20 hours of feeds and 46 ml of food. Same amount, just less time. If she does well, we may switch to Pediasure. July 7 is when we are supposed to have a scan but they do not know how to do it with a baby with a "GJ". I find it kind of scary since I can't imagine that a lot of normal babies get this done and no G or GJ fed babies don't in Rochester. I will have to call the GI doctor back about this next week. We also no longer have to give her Lactobaciilus. The doctor said if we didn't see a change that it sometimes doesn't help.

Thanking God for all of Ava's advances and praying for continued progress towards being vent and trach-free...

Day 512 - Another Praise the Lord kind of day!

Today was just plain awesome, wonderful, spectacular, exciting, glorious... I am so grateful to let you know that we were allowed and able to put Ava to room air today. She can breathe without the need of oxygen. We went to Lung Center and to my delight they decided to try her on .25% and then straight to room air! The pulsox seemed to be acting up a bit, and she did start gagging for some reason, but overall she did really well after I changed the pulsox on her foot. She didn't head bob or belly breath but completely looked comfortable. We did it again when we got home and she did pretty well. We are allowed to let her breath room air up to 4 hours a day. I am supposed to call on Friday and let them know how's she is doing. If she does great they may decide to keep her off all the time or at least during the day and then later at night! Praise the Lord! We also only have to put her at .25% if she is on any additional oxygen.

We also are using her inhalers (puffers) now only 2 times a day instead of the 4 times. In two weeks we can eliminate her Atrovent totally if we have no troubles! Such great news! The doctor even said something he has never said before - I told him that Ava's therapies want to know when she can be off the vent and I always tell them we don't know. He said I can tell them when she won't - And I said "Yeah, next year"; because that is what he said at the last visit - BUT this time he said "not THIS year!" Everyone was so excited to see how good Ava was doing and I asked our special RT if she thought Ava would be this good, and she said that she expected her to be good since VNA had let her know, but not THIS good. Oh how awesome! Ava's nurse and I felt like we were floating on air coming out of there.

Thanking God for Ava's progress and praying for Ava to be without a need for extra oxygen...

Day 507

Ava went to feeding clinic today. I was hoping for some new ideas how to feed Ava and we didn't get them. Basically they are afraid to feed her but we need to have her eat at least 3 spoonfuls before we can get a swallow study so everyone feels safe. They want to also talk with Lung Center to get clearance. We just need to work on her eating. I think I am going to try and give her cereal. Try it just like you would a normal baby and make it thicker.

The good news is that Physical therapy told me that Ava has grown developmentally in her fine motor skills from one month of skills to 12 months in skill level within a couple of weeks. It is so exciting to see what Ava can do. We still just need her to sit up completely and start putting her feet down.

Ava weighs 10.6 kg = 23.37 pounds. Length 74 cm = 29 1/4".

Thanking God for Ava's growth and praying for help with her feeding and for her to stop gagging...

Day 504

Ava got her blood taken today as well as went to her cardiology doctor. We had to wait for at least 45 minutes to get her blood taken before we got up and begged to be seen. If I had dollar bills I would have given dollars out just to get in. I am really hoping our doctor can get an in-home blood draw. We haven't heard if that is going to happen yet. I have been working on that for at least 3 weeks. That is also the place where she could get sick from.

Afterwards we went late to cardiology and the doctor was so happy with how Ava is looking. We don't have to see him for 3 months! He did warn me that Lung Center is not as aggressive as he is and they will take it slow. But he is very happy and feels like she is going to be off the vent. He also thinks with her growth we can hopefully be over the heart rate dropping response. Thank God!

Praising God for Ava's growth and praying for help with her blood draws...

Day 503

Ava had a great weekend. She is really doing so amazing. Her vent tubing actually fell in the tub today so I had to quickly change it, but it didn't bother her a bit.

Ava weighs 10.5 kg = 23.15 pounds, length is 75 cm = 29.53", head circumference is the same at 44.5 cm.

Thanking God for Ava's growth and praying that the lungs continue to grow strong and healthy...

Day 501 - Ava went to Darien Lake!

We had a wonderful day today. We got to all go out today and have fun as a family at Darien Lake. Ava had a hard time looking around because she was squinting. It wasn't sunny out and she wouldn't keep a hat on, but this was the longest she was ever outside. She is such a good baby. We dragged her around the park while the girls went on rides and she just watched everything, never complaining. We stayed from about 11 am to 1 pm. Alexandra and Ariana were so excited to take Ava out.

We finally got her Revatio med that she went without for over a day. Our insurance wanted us to go through a mail order, but we finally got it. Hopefully next time it will be easier. I just ordered her other meds to make sure we have them in advance and I haven't heard that they will be a problem.

Thanking God for Ava's growth and praying that we have many more fun times as a family...