Day 671

Today we met with the therapies. Not sure if it went how it should have. SKIP who is such a big advocate for Ava and who has gotten the approval for the Kid Kart, noticed that the meeting didn't seem to be involving the family but rather the therapists tell our service coordinator. The OT wants to go down to 2 times a week from three and the PT wants to go down to 2 soon. We were told by SKIP that 90% of kids in Erie County are getting PT and OT at least three times a week. And we were told in Genesee County that it's abnormal. Well, our therapists have also never worked with a ventilator case before. In addition, speech, Ot and her teacher want to co-treat - which means teach Ava at the same time. So Ava goes from getting 5-6 hours of therapy to 2-3 hours. In the beginning it was hard to work with Ava because she didn't sit or interact, but at this point, she can do both and can easily interact. They have not given a good reason to co-treat, but rather continue doing it despite being told of the "issue". I spoke to the service coordinator about it, and she started off that discussion by calling it an "issue", which immediately made everyone on edge. She is supposed to be what SKIP is for us with the therapists. But it seems as though she works for therapists. The whole situation brings in a toxic environment. Ava likes her therapists, but it definitely puts me and the family on edge. There is whispering and I'm sure there is much water cooler talk going on. We are not sure what to do with this situation as much as everyone that is reading this. There are constantly issues like this going on, but we really do love having Ava home. The best times are when it's just the five of us. She loves her sissies and they will do anything for her. They love interacting with her and have no jealousy of the time she gets. I do have to leave the house though, for the girls to get any sort of attention besides schooling.

Ava also is getting her IVIP next Monday since we have gotten the second round of the blood draw back. She goes Friday to get a blood draw to see if her one shot is working in her body.

The GI doctor also went up in her feed to 180ml every 4 hours and we will probably go up again next week.

Thanking God for Ava being home for over six months and praying for wisdom and knowledge...

Day 670

Today was a great day with Ava. She is standing on her own in the crib, not completely able to pull herself but she is working on it. She is doing pretty good eating a few spoonfuls of food when we are eating together as a family. She chews it, but I'm not sure if it gets down her throat. If it did, we would take her to get a swallow study.

Tomorrow we have the therapies come for a 6 month review. We are hoping they don't go down in services because Ava still has many needs. On the 13th, we go to Lung Center so please pray that she stays healthy and we go down in vent settings. Can you imagine if they say after we go down that we can try "sprinting" her? That means you take her off the vent for a certain amount of minutes. Amazing thought!

Ava did lose a little bit of weight. She is down to 11.70 kg from 11.85 kg. 11.70 = 25.79 pounds. I will call tomorrow to see if GI wants to go up in food volume.

Thanking God for Ava's will to stand and praying that she will walk and enjoy eating...

Day 665 - Ava's First Thanksgiving Home!

Today was a very special day. We had so much fun with Ava and she was such a ham to our guests. Besides spitting up, she loved to make everyone laugh and especially loved trying to pull the table cloth off the table. She knew it was a fun day and would make signs to show off. Ava would also start talking and babbling even with her trach. We are so happy to have her home and it really makes our family be complete.

Thanking God for Ava to be home and praying for many more holidays as a family...

Day 661

Ava has been doing great with her vent settings being lowered to a pressure support of 21. She still has some spit ups once in a while. Today was only once (tonight). She actually ate (orally) pretty well too - moving the food around her mouth. She took a really long nap this afternoon and she is really partying it up and talking tonight. She is really doing amazing things; moving around and signing for us that she wants to stand. And for those of you who know Ava well, she used to pick her legs straight out when you would lift her. Now she actually plants her feet and is trying to pull herself up. She is still weak from being in the hospital so long, but she can completely get herself to a sitting position and push herself around.

We have been sick lately; with exactly what I don't know. The girls and I have had coughs but thankfully Ava has been free of any illness. I have been wearing a mask any time I am near her.

Ava is up to 165 ml of food four times a day and her weight has seemed to have stabilized. She weighs 11.85 kg = 26.12 pounds.

Thanking God for his love that has been bestowed upon us and praying for strength, energy and Ava to be vent free...

Day 656 - Another vent setting down... a few more to go!

Today I called Lung Center because Ava has been stable with her feeds for a couple of weeks. I told them how great she is doing and after discussing it with each other, they decided to have VNA come out and lower her vent settings tomorrow to a pressure support of 21.

We got again to Lung Center in December and we will decided what to do at that stage. They are very excited and we are as well!

Thanking God for Ava's lung growth and praying to be vent free...

Day 648

Ava got her new "G" in this morning into her tummy. It was super easy and a lot less stress than a GJ. On the way to the appointment though Ava spit up a ton of bile and pretty much vomited the food. She ate around 7:30 to 8 am and this happened about 8:30 - 9 am. Not sure if this happened because she ate early and hadn't gotten the Prevacid or what. We did notice that her food was coming out of her tummy after unclamping her about 45 minutes later. She usually has it digest by then. But she kept that feed down. After her 3pm feed she kept it down until I let her drain into her Farrell bag and then I let her tummy take it back and she then spit it up. But that was around 5pm. After her 6pm feed she spit up a ton at 7pm. I just got done feeding her at 6:45pm because we went up to 150 ml - 25 ml more. Not sure what the issue is, if it was too much food, but she did spit up this am before the change. Please pray, this stresses me out so much. I need wisdom. God gave it to me a couple of weeks ago; Lord I need it again.

Ava weighs 11.85 kg = 26.12 pounds. She went down a little. Tomorrow I can hopefully call Lung Center to go down in her vent settings from 23 pressure support to 21.

Thanking God for Ava's growth and praying for her tummy to be healed...

Day 645

Ava is up to 125 ml and we will speak to the GI doctor on Monday to probably go up. She is 348 ml under what she was eating prior. We went to a chiropractor highly recommended from a friend and he checked Ava's nutrition by muscle testing. It was a truly incredible experience and he found Ava to be in really good healthy minus her gall bladder, spleen and tummy. He also found after no prompting that Pediasure is a better food for her than Peptamen Jr. When the Peptamen Jr. was in the metal can it really wasn't good for Ava, but when it was in the plastic container I had, it was ok. He did find Pediasure as a better fit for her. After he found that out, I told him that I have been feeling that way for months and he said I should go with my gut instincts. Of course I have been trying to push for that even when we were in the hospital. It's really unbelievable how God puts this wisdom in my head. It doesn't make sense but it's for real. This week has proved that. She doesn't need to be fed in her intestine when I have been feeling that way since a year ago.

She is scooting all over and really enjoys standing. I am enjoying getting more and more connected with Ava and this week she really has been loving me up.

Thanking God for Ava's love and praying for cuddles and for her to eat...

Day 643

Ava got her IVIG today for hopefully the last time. She got her blood taken today and when she saw the nurse walk in, she remembered her. Ava put her head on my chest and looked away from her. It's so amazing to finally have that connection with her; that she knows mama will make it better. We have an Immunology appointment in December and with the blood that the nurse took today, we will be able to see if she needs any more additional immunoglobins.

We got Ava up to her full 125 ml feeds and she has had no problems. Once in a while some gagging but it seems to have decreased. We have the Farrell bag off more often and she doesn't seem to be spitting up more gastric juices. Monday we will be getting a new "G" put into her stomach.

The girls and Ava are having so much fun with each other. She is scooting around and the girls scream with excitement which makes Ava go faster. She gets caught up in all her vent tubing and we have to untwist her.

Thanking God for all the fun and praying for years and years of more...

Thanking God

Day 642

We had an incredible day today. Words can barely explain our excitement. We had another day of feeding. She ate 120 ml 4x today with about 4 feeding sessions where she ate baby food and drank a bit of milk. What made the day even better was we found out that her cortisol levels were 26.5 when they only had to be 18. So we no longer need to see Endocrine and Ava doesn't need stress doses of steroids. Yeah! Praise God!

She did gag a little after the 6pm feed but no food came up. The other fun news is that Ava has started pushing herself backwards on her booty. She is turning herself in circles and it's hysterical. We are having so much fun with her.

Thanking God for all of Ava's growth and praying for her to walk...