Evelio was discharged from Rose Rock Academy on Wednesday, September 26th.
I was set to pick him up at 2pm. My mother-in-law and I arrived in Oklahoma City an hour and a half early. She decided we would wait for the time at the McDonald's down the street (the same McDonald's that Robert and I would take Evelio to on visitation days). I was so impatient. I couldn't sit still. We went to Rose Rock at 1:30pm. I then sat impatiently in the waiting area of the check-in/nurse's station until 2:07pm. Then, Keila finally came in with her intern and discharge papers. Then, I signed my life away and received my copies of everything rather greedily. I was ready to go.
I glanced out the door of the office and I see him. My baby was walking with an aide. She had a duffel bag with all of Evelio's clothes and a huge packet with Evelio's art projects inside.
Becca, his expressive therapist was calling to him from across the courtyard to hug him bye. He ran up to her and gave her a hug. I'm sure he was wondering why everyone was being so lovey-dovey with him. Then I walked out of the office and called to him. He turned and looked at me, smiled, and took off running toward me. I ran toward him too. There wasn't a huge distance between us, but I still felt as though there should be cameras filming this absolutely blissful moment between mother and son so I could watch it over and over again.
Anyhow, I scooped him up in my arms and he kissed me right on the lips. The aide handed Evelio's bag and file to my mother-in-law while I accompanied him to the bathroom. After a cup of water he finally went to the potty. Then, the nurse did one last check-over and went over his meds with me three times to make sure I understood.
When Evelio was admitted, he weighed around 47lbs. I believe he lost some at first and then apparently started gaining because now he weighs 51lbs. Maybe it's because he grew much taller. I'm not exactly sure how tall he was when he was admitted but now he measures at around 48"-49" which is around 4'-4'1" tall.
All the way home, Evelio was laughing and making noises. He was playing with the sunlight, trying to wipe it off his Nani Carrie's leather backseat. When we got home this time, there was no freak out. Just a bigger child, happy to be home.
He was in a great mood all afternoon and evening. Had 1 small accident and then spent 20 minutes on the pot doing you know what. He slept all night other than me waking him up every 3-4 hours to use the potty so that he doesn't wet the bed. I'm trying to teach him that if he gets up at night he should try to go to the potty.
Today, I've been up since 6:15am and Evelio since 7:15am. He has been in a fantastic mood all morning (except when I gave him a haircut, during which, if he could talk, I'm sure he would have been throwing some choice curse words at me). He hates clippers. He became a little nervous and placed his hands over his ears when I vacuumed the living room rug because of the noise of the vacuum.
He has had one accident (#1) today, but that was on the run to the potty to do #2, which I am absolutely bursting with pride to say that he was taking himself to do while I was busy printing off -Birth Defect- notes for my -Human Development and Learning- class. I'm surprised I didn't lose my voice with how loudly I was praising him as he sat with his little poop-strain face while doing his business :).
Anywho, as you can tell I am one happy mama. I am so glad I have my baby back. He starts school on Monday, and until then he and I will absolutely be inseparable!
Now, back to my baby! Bye!
Thursday, September 27, 2012
Tuesday, September 18, 2012
The Anticipation is Killing Me!
I am super duper overly excited for Evelio to come home!
His 2-day pass last week went AMAZING.
He was very well behaved, but very, very, very hyper. We had a sticky spot when we first got home. I have new living room furniture and a new desk in my dining room and apparently Evelio was thinking that this was not his house. He was shaking and crying and freaking out. After about an hour in mommy's bed watching "Fairly Odd Parents", he finally became curious enough to explore the house. We have glass-topped coffee and end tables. Evelio is not used to that either. It was so funny!
So picture this, he was standing in front of the TV watching "Happy Feet" and flapping and jumping away. At the same time, he was backing up a little bit with each jump. He eventually ran into the coffee table. He turned around while holding his little backside, (I'm sure the sharpness of the edge of the glass startled him and hurt him a little) and looked at the table with his eyebrows furrowed together. He slowly reached his hand out and touched the glass. He moved his hand around on the glass and then pulled it back and looked at it. He then touched his palm to his lips and then slowly moved it down until it ran into the table again. All the time he had this curious and focused look on his face. I was cracking up. I imagine that his mind couldn't understand why there was something solid there if he could see through it. It was amazing to watch him concentrate and learn about the glass!
Anyway, he was great while he was at home. I took him to the local spray park down the street (splash pad) and he absolutely LOVED it. He loves water.
His 2-day pass last week went AMAZING.
He was very well behaved, but very, very, very hyper. We had a sticky spot when we first got home. I have new living room furniture and a new desk in my dining room and apparently Evelio was thinking that this was not his house. He was shaking and crying and freaking out. After about an hour in mommy's bed watching "Fairly Odd Parents", he finally became curious enough to explore the house. We have glass-topped coffee and end tables. Evelio is not used to that either. It was so funny!
So picture this, he was standing in front of the TV watching "Happy Feet" and flapping and jumping away. At the same time, he was backing up a little bit with each jump. He eventually ran into the coffee table. He turned around while holding his little backside, (I'm sure the sharpness of the edge of the glass startled him and hurt him a little) and looked at the table with his eyebrows furrowed together. He slowly reached his hand out and touched the glass. He moved his hand around on the glass and then pulled it back and looked at it. He then touched his palm to his lips and then slowly moved it down until it ran into the table again. All the time he had this curious and focused look on his face. I was cracking up. I imagine that his mind couldn't understand why there was something solid there if he could see through it. It was amazing to watch him concentrate and learn about the glass!
Anyway, he was great while he was at home. I took him to the local spray park down the street (splash pad) and he absolutely LOVED it. He loves water.
He also did very well using the potty. He had two #2 accidents which I'm pretty sure were my fault (I gave him grapes, which gave him diarrhea). He also wet the bed one time during the night. But he did great with using the potty without having #1 accidents during the day!
Since he did well during pass, he gets to come home on the 26th! I don't think time has EVER moved this slowly! I just cannot wait!
We had his IEP meeting this morning and discussed his placement for this year. I am super happy that he will be able to attend school for 4 hours instead of 2 that he had last year. And. . . he gets to go to school on Fridays this year too! His new teacher, Mrs. Charitan, is very likable and funny and I love her already! Her room looks fantastic. She only has 3 other students in her class at the moment so Evelio will be number 4.
So here's to hoping that the 26th gets here in a hurry or I just might die of anticipation!
Thursday, September 6, 2012
One Day to the Next
From Wednesday to Thursday, my world, in terms of feelings, went topsy turvy.
Wednesday
Overall, Wednesday was a terrible day.
Firstly, I contacted a local brand new ABA Therapy center to talk with someone about possibly enrolling Evelio in services when he is discharged. The owner called me back and asked for my e-mail so that I could fill out preliminary paperwork. At the end of the phone call, she asked me if I had any other questions at that time. I then asked if she would be accepting SoonerCare Insurance (Oklahoma Medicaid). Her answer was that unfortunately, most insurance companies were not covering ABA therapies at this time and especially not medicaid. That most likely, I would have to wait until the health insurance reform bill goes through. BIG LET DOWN. However, I explained that SoonerCare was covering the ABA therapy that Evelio is receiving at his residential school and that SoonerCare had to pay much more money to them than they would be responsible for if the center was local and there would be no live-in costs. She then said she would do some more looking around for me and then let me know, and until then I could look at the paperwork. This paperwork has the prices charged on it. OMG! It is ridiculously expensive. Now, I am not blaming the ABA therapist who set the prices. Anywhere you go for ABA, the price of it is extremely high. I became very depressed because if SoonerCare refuses to cover it, there is absolutely NO WAY I can afford this for my son. I'm talking $60/hr expensive. It got me thinking of how you really have to be rich in order to afford quality and necessary intervention services and therapies for your child(ren).
On top of that, around 5:00 pm I get a call from the business management/billing office of the residential school that Evelio attends. She says that their records are showing a discrepancy during the month of June where his SoonerCare was inactive for 12 days. I explained that SoonerCare had sent a recertification letter to me during the month of May and I chose to do this over the Internet. I did the application online again and it said that he was approved again. About a week later, a letter came in the mail saying that he was covered and who his primary care physician was. Then, a few days later, another letter came that said he was NOT covered. So, I re-applied online again and again it said he was covered. The same letter came confirming coverage, and then the letter declaring non-coverage came. I finally called our local Department of Human Services and they said that since my son has a disability, I would have to apply in-office. So I did. At my interview appointment, the worker told me that online, as soon as I entered the information that my son receives SSI/Disability or put in that he has a mental disability, a message should have popped up and told me to go to my local office. I explained that it didn't either time that I applied online. Anyway she ended up saying that I was covered. When I reported back to my son's therapist I was informed that the situation was taken care of and he was covered. Then she informed me that she had been under the impression that it had been taken care of as well, however she had just been contacted by SoonerCare with a message that the rules had changed and they would not backpay any previous medical charges while the insurance showed as inactive. "So what does this mean?" I asked. And what she said made me drop my phone and my heart stop. "You will be receiving a bill for approximately $7000 in the mail." I felt like I was going to pass out. All I could do was cry. Sure, I can make payments, however THIS IS NOT FAIR and I'll end up paying this for the rest of my life.
However, Thursday got a little better.
I had been sad all day thinking about the things that happened on Wednesday. I called Evelio's therapist and talked to her about that HORRENDOUS bill. She advised me to call SoonerCare and get this straightened out and also gave me another name and number of someone that could help me better with the situation than she could. Then I started talking about my plans for Evelio to come home sooner than they had planned and how I was scared to pull him out against medical advice, because what if SoonerCare refuses to pay for the entire 4 months that he's been up there if I take him out against the doctor's advice. She stopped me in the middle of my random, ranting worries. She told me that she had spoken with Evelio's doctor and that the doctor had a plan. She said that if I take Evelio on a 2-day home pass on Monday (so that he would be back at school on Wednesday) and he behaves and is good, that he will be allowed to discharge on SEPTEMBER 26th!!! That's 2 days before his birthday. I felt like I was going to cry then too. But out of joy. I am so glad that this news came today because it's just what I needed. So now I have something to look forward to. I am super excited to finally have my baby back home after a very long time apart. He has made a lot of progress with self-help skills and therapy tasks, and is now able to use the potty with almost no accidents. That news washed away all my despair that was brought on by the monster of Wednesday. Although Wednesday was a terrible nightmare, Thursday totally changed the way I feel.
It got better from one day to the next.
Wednesday
Overall, Wednesday was a terrible day.
Firstly, I contacted a local brand new ABA Therapy center to talk with someone about possibly enrolling Evelio in services when he is discharged. The owner called me back and asked for my e-mail so that I could fill out preliminary paperwork. At the end of the phone call, she asked me if I had any other questions at that time. I then asked if she would be accepting SoonerCare Insurance (Oklahoma Medicaid). Her answer was that unfortunately, most insurance companies were not covering ABA therapies at this time and especially not medicaid. That most likely, I would have to wait until the health insurance reform bill goes through. BIG LET DOWN. However, I explained that SoonerCare was covering the ABA therapy that Evelio is receiving at his residential school and that SoonerCare had to pay much more money to them than they would be responsible for if the center was local and there would be no live-in costs. She then said she would do some more looking around for me and then let me know, and until then I could look at the paperwork. This paperwork has the prices charged on it. OMG! It is ridiculously expensive. Now, I am not blaming the ABA therapist who set the prices. Anywhere you go for ABA, the price of it is extremely high. I became very depressed because if SoonerCare refuses to cover it, there is absolutely NO WAY I can afford this for my son. I'm talking $60/hr expensive. It got me thinking of how you really have to be rich in order to afford quality and necessary intervention services and therapies for your child(ren).
On top of that, around 5:00 pm I get a call from the business management/billing office of the residential school that Evelio attends. She says that their records are showing a discrepancy during the month of June where his SoonerCare was inactive for 12 days. I explained that SoonerCare had sent a recertification letter to me during the month of May and I chose to do this over the Internet. I did the application online again and it said that he was approved again. About a week later, a letter came in the mail saying that he was covered and who his primary care physician was. Then, a few days later, another letter came that said he was NOT covered. So, I re-applied online again and again it said he was covered. The same letter came confirming coverage, and then the letter declaring non-coverage came. I finally called our local Department of Human Services and they said that since my son has a disability, I would have to apply in-office. So I did. At my interview appointment, the worker told me that online, as soon as I entered the information that my son receives SSI/Disability or put in that he has a mental disability, a message should have popped up and told me to go to my local office. I explained that it didn't either time that I applied online. Anyway she ended up saying that I was covered. When I reported back to my son's therapist I was informed that the situation was taken care of and he was covered. Then she informed me that she had been under the impression that it had been taken care of as well, however she had just been contacted by SoonerCare with a message that the rules had changed and they would not backpay any previous medical charges while the insurance showed as inactive. "So what does this mean?" I asked. And what she said made me drop my phone and my heart stop. "You will be receiving a bill for approximately $7000 in the mail." I felt like I was going to pass out. All I could do was cry. Sure, I can make payments, however THIS IS NOT FAIR and I'll end up paying this for the rest of my life.
However, Thursday got a little better.
I had been sad all day thinking about the things that happened on Wednesday. I called Evelio's therapist and talked to her about that HORRENDOUS bill. She advised me to call SoonerCare and get this straightened out and also gave me another name and number of someone that could help me better with the situation than she could. Then I started talking about my plans for Evelio to come home sooner than they had planned and how I was scared to pull him out against medical advice, because what if SoonerCare refuses to pay for the entire 4 months that he's been up there if I take him out against the doctor's advice. She stopped me in the middle of my random, ranting worries. She told me that she had spoken with Evelio's doctor and that the doctor had a plan. She said that if I take Evelio on a 2-day home pass on Monday (so that he would be back at school on Wednesday) and he behaves and is good, that he will be allowed to discharge on SEPTEMBER 26th!!! That's 2 days before his birthday. I felt like I was going to cry then too. But out of joy. I am so glad that this news came today because it's just what I needed. So now I have something to look forward to. I am super excited to finally have my baby back home after a very long time apart. He has made a lot of progress with self-help skills and therapy tasks, and is now able to use the potty with almost no accidents. That news washed away all my despair that was brought on by the monster of Wednesday. Although Wednesday was a terrible nightmare, Thursday totally changed the way I feel.
It got better from one day to the next.
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