Well, it is the end of February...almost 5 months since she was fitted for her wheelchair and STILL haven't gotten an approval from medicaid. Very frustrating! I mean they DID tell us it could be upwards of 5-6 months before we get her chair, but the people at the seating clininc really didn't think it would take that long and, from the looks of things, it may take MORE than 6 months:(
Another frustrating thing we're going through is therapy. PT (physical therapy) seems to be trucking along without a hitch, but OT (occupational therapy) and Speech, that's a WHOLE different story. We have an OT, but there has been some tension due to us not being able to get the proper equipment to fit Ava's current needs. We're in kind of a catch-22 if you will, because medicaid won't pay for it (or they'll make us take it to the state level) and we definitely cannot afford it. Some of the 'special needs toys' are hundreds of $$. We're doing okay right now, since Ava is on a vent and will probably require home-based therapy for some years to come, but one day we will probably have to take her to a therapy place 2-3x a week, something that makes me cringe to think about.
Another disturbing thing that has started, is that Ava has begun to twitch. Her RN consulted with neurology and we think that she has simply outgrown her keppra dosage, so we made some adjustments, but just keep her in your prayers.
For those of you who do not talk to us on a regular basis and may only get updates via this website, here's an overview:
Ava is now 2 years old, she turned 2 in December. She is on 24-hour ventilator support, though she actually breathes well off the vent. We are able to take her off for a couple hours a day and allow her freedom from all the 'tubes.' She currently has 3 full times nurses who are like her 2nd, 3rd and 4th mommies:) We really are so blessed to have such a wonderful nursing staff, that has been a journey in itself let me tell you!
As for Aohdan, he is now 4 years old, finally potty trained and in pre-school 3x a week. He is smart as a whip but we still battle his mouthiness and defiant behavior. Though I am told that he really is just a normal 4 year old boy who has learned how to adapt to having a little sister who gets ALOT if attention.
Kenny and I are doing really well. I am a full time nursing student, and should graduate in the spring with my initial Practical Nursing License. This will enable me to earn an income working in home health and, therefore, give me the freedom to continue my pursuit of a Bachelor of Science in Nursing. I still shake my head at where our lives are now. Don't get me wrong, I am not complaining, but if you would've told me 10 years ago that at the age of 36 I would be a full time college student and have a daughter with CP, I would've looked at you like you were crazy. Funny thing is, I remember for weeks and months after Ava's birth I would lay in bed begging, pleading and praying for the Lord to take this burden from us, from me. I couldn't bear the thought of what was happening. I can now say, without a second thought....I wouldn't change it. It has been such a wonderful ride, and the Lord has revealed Himself to our family and blessed us so, so much. I remember my mom would tell me stories about what the Lord had done in her life, and I was too stupid and self-centered, and focused on myself to care about what God had for my life. How I wish I could just have lunch with her one time, I would love to share with her that she was SO RIGHT! I never saw my mom happier than in the 10 years she was battling cancer! Seriously. The week before she died, she had this glow on her face and a smile that would not quit, and here I was sitting by her bedside bawling my eyes out and asking her, how she could be smiling. She knew where she was going, she told me, "I going to be with my Jesus." I don't mean to talk about a sad time, but seriously anyone around my mom will tell you that she was the one comforting all of us during her battle. I mention thid because a lot of times people will still look at me with pity, or talk about Ava like she is such a burden and 'how do we do it.' Ava is disabled, no doubt about it. We have long ago accepted whatever her little life is. If she never walks, talks, or gets off the vent, we will still cherish the time we have with her. We continue to pray for her complete healing. But we do not know what God's Will for her life is. We do not know how He plans to use this situation, though we have already seen so many great things come out of all this.
I'll write more soon. But I do want to ask all of you to keep a few things in your prayers:
#1: Pray for Ava's continued healing, always pray for this
#2: Pray that we get the equipment she needs for OT & PT, (also for her wheelchair)
#3: Pray for guidance on our future housing plans. Kenny and I signed another year lease on our current home, but with our recent bankruptsy, we need serious guidance on how to get approved on another home in the near future
#4: and finally, Pray for our marriage to remain first priority. Pray specifically for us to keep our marriage focused on God and His will for our lives, pray against arguing and fussing, pray for closeness and oneness to remain.
Thank you all and God Bless!!!
Another frustrating thing we're going through is therapy. PT (physical therapy) seems to be trucking along without a hitch, but OT (occupational therapy) and Speech, that's a WHOLE different story. We have an OT, but there has been some tension due to us not being able to get the proper equipment to fit Ava's current needs. We're in kind of a catch-22 if you will, because medicaid won't pay for it (or they'll make us take it to the state level) and we definitely cannot afford it. Some of the 'special needs toys' are hundreds of $$. We're doing okay right now, since Ava is on a vent and will probably require home-based therapy for some years to come, but one day we will probably have to take her to a therapy place 2-3x a week, something that makes me cringe to think about.
Another disturbing thing that has started, is that Ava has begun to twitch. Her RN consulted with neurology and we think that she has simply outgrown her keppra dosage, so we made some adjustments, but just keep her in your prayers.
For those of you who do not talk to us on a regular basis and may only get updates via this website, here's an overview:
Ava is now 2 years old, she turned 2 in December. She is on 24-hour ventilator support, though she actually breathes well off the vent. We are able to take her off for a couple hours a day and allow her freedom from all the 'tubes.' She currently has 3 full times nurses who are like her 2nd, 3rd and 4th mommies:) We really are so blessed to have such a wonderful nursing staff, that has been a journey in itself let me tell you!
As for Aohdan, he is now 4 years old, finally potty trained and in pre-school 3x a week. He is smart as a whip but we still battle his mouthiness and defiant behavior. Though I am told that he really is just a normal 4 year old boy who has learned how to adapt to having a little sister who gets ALOT if attention.
Kenny and I are doing really well. I am a full time nursing student, and should graduate in the spring with my initial Practical Nursing License. This will enable me to earn an income working in home health and, therefore, give me the freedom to continue my pursuit of a Bachelor of Science in Nursing. I still shake my head at where our lives are now. Don't get me wrong, I am not complaining, but if you would've told me 10 years ago that at the age of 36 I would be a full time college student and have a daughter with CP, I would've looked at you like you were crazy. Funny thing is, I remember for weeks and months after Ava's birth I would lay in bed begging, pleading and praying for the Lord to take this burden from us, from me. I couldn't bear the thought of what was happening. I can now say, without a second thought....I wouldn't change it. It has been such a wonderful ride, and the Lord has revealed Himself to our family and blessed us so, so much. I remember my mom would tell me stories about what the Lord had done in her life, and I was too stupid and self-centered, and focused on myself to care about what God had for my life. How I wish I could just have lunch with her one time, I would love to share with her that she was SO RIGHT! I never saw my mom happier than in the 10 years she was battling cancer! Seriously. The week before she died, she had this glow on her face and a smile that would not quit, and here I was sitting by her bedside bawling my eyes out and asking her, how she could be smiling. She knew where she was going, she told me, "I going to be with my Jesus." I don't mean to talk about a sad time, but seriously anyone around my mom will tell you that she was the one comforting all of us during her battle. I mention thid because a lot of times people will still look at me with pity, or talk about Ava like she is such a burden and 'how do we do it.' Ava is disabled, no doubt about it. We have long ago accepted whatever her little life is. If she never walks, talks, or gets off the vent, we will still cherish the time we have with her. We continue to pray for her complete healing. But we do not know what God's Will for her life is. We do not know how He plans to use this situation, though we have already seen so many great things come out of all this.
I'll write more soon. But I do want to ask all of you to keep a few things in your prayers:
#1: Pray for Ava's continued healing, always pray for this
#2: Pray that we get the equipment she needs for OT & PT, (also for her wheelchair)
#3: Pray for guidance on our future housing plans. Kenny and I signed another year lease on our current home, but with our recent bankruptsy, we need serious guidance on how to get approved on another home in the near future
#4: and finally, Pray for our marriage to remain first priority. Pray specifically for us to keep our marriage focused on God and His will for our lives, pray against arguing and fussing, pray for closeness and oneness to remain.
Thank you all and God Bless!!!
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