Hey Everyone! Lots to update you all about regarding Ava:) So let's begin with... Ava is coming up on 2 years old in 2 MONTHS! It is so hard to believe that a little under 2 years ago we were going through the toughest trial of our lives and now we are on the other side looking back through different eyes!
So Ava has had a lot of clinics and check ups lately...and still more to come! We have struggled for months to get a group of nurses dedicated to our case and getting everyone happy with their hours...oh what a learning experience it has been let me tell ya! So anyhoo, on with Ava updates. Comparing her with her first 6 months of life--what an incredible difference! She fought so hard to breathe and live her first 6 months of life, that I don't think her little body had a chance to do any 'developing' or so to speak. Her therapists have been working with her for months on, what seems to be, very basic things...like sitting up...reaching for toys...things that seem so easy to you and me ya know? But her little brain was not making the connection for a longggg time. So after almost 2 years, she is sitting up, basically, on her own with a little support. She has a chair called a 'Bumbo' seat that giver her a little extra support from behind, but she holds her own and it is so COOL to see it! I've got a picture so I'll try to get it posted:) She still have a trach and is still on the vent (a lot of people ask me about that so I thought I'd just answer that up front) but she breaths very well when we take her off the vent, we just gotta watch that she doesnt get too thick (meaning her lung secretions) or that she doesn't trick us and fall asleep off the vent, since she doesn't breathe real well off the vent:)
As far as other things, she is still waiting patiently to get into audioology and opthamology so we know where her hearing and vision are. She IS, however, finally getting into a seating clinic this November on the 12th, to get fitted for a custom wheelchair that will not only conform to her size and support needs, but it will also enable us to be SOOO much more mobile with her! She doesn't get out much except for clinics and such. I wish we did get her out more, but it is just very hard. So getting her chair is a very, very exciting thing for us. And I believe we are going to be getting a stander as well! the stander will allow us to take advantage of her willingness to put weight on her feet and legs and allow her to enjoy standing--Yay!! So back to her wheelchair, this custom wheelchair has nifty little custom 'cubby holes' for all her equipment, so we can just strap her in, put her equipment on the back and underneath, and OFF WE GO! Sooooo much easier than what we go through now. one person makes 2-3 trips out to the car to carry all her 'stuff' then we go back and carry her out...ugghh! It IS tasking but we do it. Yay for a wheelchair coming soon! The next thing I need to figure out is a van. We HAVE a van, but it is older and have unknown mileage. It SAYS 140,000, but since we bought it with unknown miles it is hard to say. My wonderful hubby IS an awesome mechanic and, as he puts it, as long as they sell parts fot it, he can keep it on the road. My challenge is this....medicaid will PAY for a wheelchair lift, which is approx $8-10,000 +/-, so I am having a hard time justifying putting a $10,000 lift into a $2,000 van, not that I mind about the van so much, but medicaid will only put a lift in about once every 5-7 years, and I am just not sure if THIS is the van I want to put it in. Decisions, decisions. So I am pondering holding a fund raiser to help us buy a new or newer van (either one I am NOT picky). It would just be sooo nice to have a vehicle with a lift it would make taking her places an absolute BREEZE! So anyhoo, that's been on my brain lately...
I'll post more in a few days. And again, sorry for the inactivity this past summer, it's just been so crazy! I am in school full time, and we are JUST NOW getting to a point where I can plan ahead for things and know that we're going to have nursing coverage. In fact, Kenny and I are making plans to get away for a few days the 3rd week in November, and this will be the FIRST time we have gone away by ouirselves since our HONEYMOON! So I am very excited to say the very least! So again, I'll update more very soon everyone! And THANK YOU all for everything!
Vicki
So Ava has had a lot of clinics and check ups lately...and still more to come! We have struggled for months to get a group of nurses dedicated to our case and getting everyone happy with their hours...oh what a learning experience it has been let me tell ya! So anyhoo, on with Ava updates. Comparing her with her first 6 months of life--what an incredible difference! She fought so hard to breathe and live her first 6 months of life, that I don't think her little body had a chance to do any 'developing' or so to speak. Her therapists have been working with her for months on, what seems to be, very basic things...like sitting up...reaching for toys...things that seem so easy to you and me ya know? But her little brain was not making the connection for a longggg time. So after almost 2 years, she is sitting up, basically, on her own with a little support. She has a chair called a 'Bumbo' seat that giver her a little extra support from behind, but she holds her own and it is so COOL to see it! I've got a picture so I'll try to get it posted:) She still have a trach and is still on the vent (a lot of people ask me about that so I thought I'd just answer that up front) but she breaths very well when we take her off the vent, we just gotta watch that she doesnt get too thick (meaning her lung secretions) or that she doesn't trick us and fall asleep off the vent, since she doesn't breathe real well off the vent:)
As far as other things, she is still waiting patiently to get into audioology and opthamology so we know where her hearing and vision are. She IS, however, finally getting into a seating clinic this November on the 12th, to get fitted for a custom wheelchair that will not only conform to her size and support needs, but it will also enable us to be SOOO much more mobile with her! She doesn't get out much except for clinics and such. I wish we did get her out more, but it is just very hard. So getting her chair is a very, very exciting thing for us. And I believe we are going to be getting a stander as well! the stander will allow us to take advantage of her willingness to put weight on her feet and legs and allow her to enjoy standing--Yay!! So back to her wheelchair, this custom wheelchair has nifty little custom 'cubby holes' for all her equipment, so we can just strap her in, put her equipment on the back and underneath, and OFF WE GO! Sooooo much easier than what we go through now. one person makes 2-3 trips out to the car to carry all her 'stuff' then we go back and carry her out...ugghh! It IS tasking but we do it. Yay for a wheelchair coming soon! The next thing I need to figure out is a van. We HAVE a van, but it is older and have unknown mileage. It SAYS 140,000, but since we bought it with unknown miles it is hard to say. My wonderful hubby IS an awesome mechanic and, as he puts it, as long as they sell parts fot it, he can keep it on the road. My challenge is this....medicaid will PAY for a wheelchair lift, which is approx $8-10,000 +/-, so I am having a hard time justifying putting a $10,000 lift into a $2,000 van, not that I mind about the van so much, but medicaid will only put a lift in about once every 5-7 years, and I am just not sure if THIS is the van I want to put it in. Decisions, decisions. So I am pondering holding a fund raiser to help us buy a new or newer van (either one I am NOT picky). It would just be sooo nice to have a vehicle with a lift it would make taking her places an absolute BREEZE! So anyhoo, that's been on my brain lately...
I'll post more in a few days. And again, sorry for the inactivity this past summer, it's just been so crazy! I am in school full time, and we are JUST NOW getting to a point where I can plan ahead for things and know that we're going to have nursing coverage. In fact, Kenny and I are making plans to get away for a few days the 3rd week in November, and this will be the FIRST time we have gone away by ouirselves since our HONEYMOON! So I am very excited to say the very least! So again, I'll update more very soon everyone! And THANK YOU all for everything!
Vicki
