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...