Day 730

We had a pretty good day at Developmental. Her head circumference is 45.5 cm and her length is 32.5". They found her gross motor skills at 11 months, but they are no longer saying that she can never walk. Her upper trunk has gotten stronger so they don't think it's a neurological problem. Our PT came with us and they suggested to us that she "tape" her legs to increase the muscle underneath since her feet turn outward. They found her to be cognitively at 18.2 to 2 years which is incredible. Some skils were at 18 months while others were even beyond 2. It's really great to hear. She was a little off today being distracted and tired but she still tested well. We are so excited for what the future holds for Ava.She has grown 6 months developmentally during a span of less than 4 months.

Thanking God for keeping her safe all these months and praying for continued growth...

Day 727

Ava gets very mad now with her vent on. She wants to roam the house free and gets upset when we have to put her back on after 45 minutes. I decided to call Lung Center today instead of Monday. I got approved for Ava to be off the vent 1 1/2 hours twice a day - total of 3 hours a day!!! She does so good with it off. Her sats are even 100% when she isn't moving. Praise God!

She does still spit up about 1x a day. We are praying that it stops. It isn't as bad as it used to be. We still don't get any gastric juices so it's wonderful not having them to drain anymore. She actually has been doing great eating orally again. She even asked for her cup of milk today and is drinking!

We are going to Developmental on Monday. I can't wait to see what age her skill level is at. Our PT is coming with us to help us show Ava off.

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

Day 724

 Today was everything we hoped it to be. I really felt like we had won the lottery. We lined the stairway with balloons and Ava was so happy to see the balloons. We had a little party with the immediate family and Ava was such a ham. She showed everyone how she can crawl around the house. We got her a lion cake with a pink bow in it's mane from Ohlson's bakery. She loves to roar like a lion.

We are so thankful to God for giving us Ava for the past two years. There have been many hard times, but there have been many more wonderful times that leave us breathlessly waiting for more.
Here's the link to Ava's slideshow of the last two years... http://www.youtube.com/watch?v=_UK620644_o


Thanking God for two years with Ava and praying that we no longer need the trach and Gtube...

Day 723 - On the eve of Ava's 2nd Birthday...

We are very excited to celebrate tomorrow and what tomorrow means. We think Ava is even excited and knows what a birthday is (especially after we celebrated Ali's 1/2 birthday and Daddy's birthday yesterday). Two years ago yesterday, Anthony took me into Sister's Hospital with the hopes that we could keep Ava in my tummy. Of course we all know, God had other plans. I remember feeling guilty about Anthony spending his birthday at the hospital because maybe it wasn't necessary to be there that weekend. But it was not only important, but imperative. There is probably no way Ava would have made it to the hospital alive with us living 45 minutes away. If she did there could have even been brain damage. But God gave us wisdom and knowledge to come into the hospital and get the two shots to develop lung growth. Who knows if that really made a difference??...

In other news, we didn't have a nurse Friday, Saturday night or tonight. Saturday night our nurse was late and then she ended up getting in a car accident. Tonight our nurse, who only comes in once a week, called off less than an hour before her shift, giving us much time to prepare for an all-nighter. She also hasn't been in the last three weeks. We are currently in the process of getting Medicaid nursing approval and will try to find some Medicaid nurses who can fill in since we pressured our nursing agency months ago to let us.

Ava is doing great being off the ventilator 45 minutes twice a day. She really just takes off and loves not being attached to the vent.

Ava weighs 12 kg = 26.5 pounds.

I am working on an updated slideshow for Ava's birthday tomorrow. Hopefully it will be done for your enjoyment.

Thanking God for Ava's life and praying for Ava to outlive us all (and be healthy)...

Day 720

Last night was a little bit better with the alarms going off. I was able to get a bit of sleep. Anthony comes home tonight so we are very excited. I called Lung Center to see if there was anything we could do about the alarms and they said that the only we could do is go up in trach size. We definitely don't want to go to a size 6 trach. That's huge and I don't believe our ENT wants to go up either. I actually asked to go off the vent for 45 minutes and Lung Center said ok. So we are now allowed to go off 45 minutes twice a day. Praise the Lord!

Ava is spitting up again. Not after every feed, but sometimes it happens at least a half an hour after a feed. Please pray that it stops again.

Thanking God for Ava's progress and praying for Ava to be off the vent and no longer need a trach this year...

Day 718

Ava had a swallow study done today at Children's Hospital in Buffalo. We brought her baby food, her sippy cup of milk and a couple of cheese puffs. The speech therpist mixed her food with barium and I got Ava to eat some. We found out she has a "good safe swallow for small amounts of food." She also has a delayed swallow. The food stops for a couple of seconds in her esophagus. It's not as bad as the speech therapist has seen it before. She actually asked if she could use the study for her students that she teaches at UB. Her swallow study looks pretty good for a baby on a trach and ventilator. Her delay could be because of her respiratory issues or neurological. I don't believe it is neurological.

We are also having issues with Low Minute Volume on the ventilator. It alarms if Ava's mouth is open or if the air is coming out around the trach. We have tried repositioning but for our new night nurse, the alarms were going off all night - every 2 -3 minutes. Anthony is away all week so this is making me exhausted having to get up at 6 am, going to bed after 11pm and then not getting any sleep at night. Not sure how to keep it from going off. We move her around and not much seems to work.

Ava weighs 11.90 kg = 26.24 pounds. She spit up yesterday too. Hopefully she keeps her food down like she has the last couple of weeks.

Thanking God for more good news and praying for Ava to eat...

Day 715

This week has been much better since Sunday. We have had a few nights this week without a nurse. The nurse that was just hired, is working the rest of the week. Her family was sick so she didn't come in one night. We did take the nurse off our case on Sunday night.

Ava got IVIG (immunoglobins) on Monday. We heard from the Allergy doctor on Wednesday and he said her IGg went up to 634. Last time it was 270, but that seems very abnormal, so hopefully the 270 was incorrect. IGa which went up to 17 from 14. It does need to be at 35, but he said it's ok that it is 17. Her blood test she took at least a month ago to find out if her DTAP shot stayed in her body and activated the right responses. That test came back that it has and he is waiting for another result this next week to find out if we can start giving her live vaccinations. He said that everything is looking good. This doesn't mean she might not get immunoglobin infusions all this year, but things are looking better. She also got her Synagis today which she gets once a month until March.

She has only had 2 spit ups for 20 mls all week. She is doing very well and is eating about 1-2 jars of food a day. Once we get to 3 jars a day we can go down in her volume of Pediasure she gets. Once we work milk into the equation, we can eventually get her off the G feeds. Next Wednesday we go for the swallow study to see if she aspirates when she eats.

We also got approval to go back to Ava being off the vent for 15 minutes twice a day. We are going to do this until a week from this coming Monday. Then I will call Lung Center and I am hoping we can go to 45 minutes. The RT told me that we can go faster after this point so we will be going longer every week.

We can hardly wait until the 24th for Ava's 2nd Birthday. It's hard to believe that 2 years ago, she came into this world as big surprise. God's plans for her are amazing!

Thanking God for Ava's growth and praying for her immune system to be strong and for her to be vent/trach free...

Day 710

Ava is doing really great. She is completely back to norm. I will call Lung Center tomorrow and see if we can start weaning again. She is supposed to get one more does of prednisolone, but the Pharmacy couldn't fill it. Maybe Lung Center will say she doesn't need it.

She ate two bowlfuls of food and she did not spit up at all this past week. Barely any gagging as well. Maybe it's her body used to the Pediasure or us feeding her organic foods (or both)? We also gave her these baby cheese puffs (which aren't organic) and she would take little nibbles of them without gagging. It was amazing. It's the first time I saw her actually eat something that she put in her mouth, other than baby food. Praise God! He really does move mountains when you believe!

Ava also took steps around the one side of our kitchen island today (and it's long). She really wants to move and she is getting stronger every day. Tomorrow she is getting a monthly dose of IVIG. She actually is afraid now of the woman when she comes.

Ava weighs 11.70 kg. I thought I weighed her last week and she was 12 kg, but with her not spitting up this past week and eating more baby food, I can't imagine her losing. Although she is quite active.

Thanking God for Ava's growth and the plan for her life and praying for her to be vent and "G" free...

*Update: Shortly after posting this, the heating unit on the ventilator broke. Our night nurse was changing it out when the humidifier chamber filled with water spilled over and water went up the vent tubing and into her trach and lungs. The nurse suctioned her a couple of times before I heard her suctioning. I went upstairs and found Ava blue and told the nurse to stop suctioning her and bag her with O2. Ava started to look better after I bagged her with O2 but she still looked a dark color. I suctioned her again and got a bit more out. She was also wheezy after and we put her on 1 liter of O2. We called Lung Center and after talking to them, we gave her albuterol and saline and she seemed better. I found two suctioners that had blood in them, so the nurse obviously suctioned deep and irritated her trachea. She was on O2 all night and seems to be doing much better. Please pray for constant protection over Ava and our family.

Day 707

Ava is doing better today and we are still on the steroids until Monday. She needed a bit more time recovering than the time she got sick in September. Thankfully she is off the O2. She might need it here and there but not all day. I have to call Lung Center tomorrow to give them an update.

Ava has incredibly eaten 2 bowls of food - not huge filled to the brim bowls but at least 15 spoonfuls of food in each bowl. It is so exciting! She also has been taking more steps forward and standing for a decent amount of time with help. We are having troubles with her G tube. It seems to be deflating but there doesn't look to have a leak in it.

Thanking God for Ava eating and praying for her to no longer need to be "G" fed and a vent...