Day 902 - Ava's 2 1/2 birthday

We just received some great news on Ava's 1/2 birthday. Her immune system seems to be getting better. Her IgG levels went down from 730 to 644 but they are ok with that for now. They should be over 700, but her IgA levels which are her long term immune levels have went up to 43 from 24. That is a huge increase for her! We will get another blood draw the week of August 19th and hopefully her IgG will go up into the 700s. Please pray... We will go to Immunology on the 28th. Hopefully we can soon not be so neurotic about keeping Ava away from germs. Praise God!

She is walking all over the place now. I will take a video and post soon. Thanks for reading!

Thanking God for Ava's improving immune system and praying for wisdom and knowledge...

Day 901

Today was another great day with Ava. We went to Developmental to review how she's doing. The only negative is that she had another blood draw to find out her levels of immune system (IgG & IgA). It took three of us and she was fighting hard. As soon as we walked in the room she was upset. Just the like the blood pressure cuff - she absolutely freaks out when she sees the cuff too.

Ava weighs 28 lbs now. And here's the good news... They found her to be at the following months, give or take, sometimes she tested a bit higher, but here's the average:
Fine Motor skills - 24 months
Gross Motor skills - 12-18 months (she's doing much better walking lately instead of crawling)
Language - 20 months (and that's with a trach!)
Cognitive - 24 months

She has really stepped up since we had been there 6 months ago! Praise God for a child that is just incredible. Ava was all smiles there and talking away with her Passy Muir valve. They just want to see her 6 months and we need to work on her trunk control. I can't imagine what 6 months will bring!

We also saw Ava's respiratory therapist and we spoke for awhile. She is so happy that Ava is doing so well. She keeps saying we won't need nurses for much longer... meaning the trach will be out soon. We have an appointment on August 7th and hopefully we will get the ok to go down in trach size and then ENT will take the trach out. Don't know when that is, but they were looking for Ava to get sick. Since she was sick less than a week after coming off the ventilator and didn't need the vent, it has definitely given us more confidence and she passed that test. It's amazing what a year has brought our family.

Thanking God for Ava's progress and praying for Ava to be able to eat and be trach-free...

Day 894

Sorry for the delay in posting. With the Taste of Buffalo just ending last Sunday, trying to catch up with other duties and the lack of nursing, I have let Ava's blog get behind. I will update more this week and I have some posts already planned.

Ava is doing very well and she is off the vent now for over two weeks - 24/7! Praise God! Today we went to Darien Lake in the afternoon because she wanted to go on the Merry-Go-Round. She is unbelievable. The ride has barely started and this little girl is signing "more". By the time the ride stopped, she was in tears and signing "more", "more". We went on three times and each time she did it. The last time she was better, but when we went on the train ride, and got off, she arched her back and wouldn't let me put her in her stroller. She also is going potty in her potty often and tomorrow we are going on a date to get her big girl underwear. She is so excited. Her cheeks get these dimples in them and she is all smiles at the thought of Elmo underwear. Being with Ava makes your heart soar.

Ava weighs 12.6 kg = 27.78 pounds. She gained some more weight. Lung Center is very happy and we continue to take things week by week. Keep your prayers coming, we still need to get this trach out and she still needs help eating solid foods. Thank you!

Thanking God for being with Ava and praying that we have more nursing and Ava is trach-free...

Day 885 - At the hospital

 Ava's been sick starting early Monday morning. She actually went down in trach size to a 4.5 because I couldn't get the 5.0 back in on Sunday night. Ava seemed great that night but started having wheezing issues around 5am on Monday. It turned to around the clock albuterol every 4 hours or so. It got better, then got worse. Wednesday we spoke to our Pediatrician and gave her steroids. By Thursday afternoon, she needed O2, and wouldn't settle down so we called both her Pediatrician and Lung Center. I even put the vent on her and she had trouble breathing with it. They both told us to come to the ER which we did. After about 3 Albuterols and a steroid shot in her vein, we were finally in a room for the night to be observed.

Thankfully we were released in the afternoon and she was back to her norm. Her blood cultures came back negative for any illnesses and her lung scan didn't look like pneumonia. Praise God!

Amazingly enough I was able to attend the Taste, take care of my duties and Ali and Ari stayed with me to have fun as well. Ava's incredible Daddy took care of her at home. We also found out that it's a good thing that she got sick now, cause it proved that she didn't need the vent. Even only after being off of it for less than a week.

Thanking God for his amazing miracles and praying for strength and wisdom...