Ok..I am gonna try to sum this up fast, because I just typed a bunch and then it was all deleted and I am about to throw this computer through the window.
Ethan: He was in the hospital last week for aspiration pneumonia. He choked on a piece of food and Jackie had to do the Heimlich......well, it did not all come out and this is what he developed. We have been through months of feeding therapy and he still struggles daily. We do see progress, but very small baby steps. What we did find out is that Ethan has a submucous cleft palate. After 3 ENTs have looked in his mouth hundreds of times, it took Jackie and I researching and figuring this out. The craniofacial doc confirmed this while in the hospital. Then, when he said he may not do the surgery, Jackie's and my jaw hit the floor. Get this....the doc said, " I would like to wait and see how much air comes out of Ethan's nose when he talks." You freaking moron...he is nonverbal!!! He does not talk..... So, after talking about this multiple times, he is considering performing the surgery and we will meet with him sometime soon.
Throughout all this, we sit and continue to watch Nick deteriorate. Why? Nobody knows. Since July of 2011 Nick has gone failure to thrive, his seizures have increased, his mobility has declined, spends part a day in a wheelchair, going back to AFOs (braces that go up to knee), does not care to eat, developed scoliosis and now it is impacting his heart.
We spent all day Tuesday at Children's having some significant heart work up done to see how the heart was functioning. Well, we left at 6:30 in the evening and we already received a call by 10:00 AM the next morning......well, caca....you know what this means when you get a call this fast. We were told that the official results were not back, but we needed to get all of Nick's doctors to send in everything they have one him. Well, today, I had a long talk over the phone with the cardiologist. What the MRI showed is that Nick's heart is showing "a decrease in function" and that " his heart is fighting against a bigger process". So, the heart is not causing all this to happen to Nick, but whatever is is effecting the heart.
Then, I caught myself off guard as I was saying words that I never would thought to come out of my mouth... "Is he dying?" I asked the doctor to be completely honest and do not sugar coat anything. She responded with "we don't know!" I froze for a second and thought, did that just come out of my mouth. A few tears rolled down, but then had to regain because we now have to figure out what is next. She did say that when the time comes to talk other measures or issues, she will never hold anything back.
What we do know is that he is not in any immediate danger. No cardiac meds are needed right now and we have to sit and wait, and wait, and wait. There will be more blood and then more blood. We go in for the next EEG next week and then it was recommended that Nick have a EMG. From what I gather, they will have to put him under, stick needles in his muscles and shoot electrodes into him. This will attempt to figure out which and why the muscles are declining. This doc is amazing. She is walking the walk with us and says she will not give up until we figure out what is wrong with Nick, why his body is deteriorating, and how can we stop this. After that, then maybe a muscle biopsy. Then we should have both boys' blood back from Houston in 12 weeks. We sent off their blood a few weeks ago to cross reference any and all issues with them. Nobody, not one of 19 total doctors, can tell us what is going on with our boys....
Then there is my wonderful wife. Her belief and hope gives me strength everyday to face a new one and ready to fight....fight the system...medical, legal, financial, etc.... She is the true glue to this family. Without her, and her amazing strength, we would be broken in this physical world!
With Nick, it is hard to take this all in.......I pray....pray so hard. I went from the why him? why is this going on? ...to Give him strength, give us strength, pray for no pain, pray for happiness.
Lord, be with Nick. and I know he is. Nick is so happy. His threshold of pain with his AU is amazing and he has no idea what is going on. Even though he struggles and I cringe when he attempts to walk now, he keeps going like everything is fine and the same. This is how I know my God is an AWESOME God.
We pray for answers, we pray for doctors, and we pray for a MIRACLE!
Thursday, March 1, 2012
Tuesday, January 10, 2012
Morning prayer, lunch with a side of Dr., & space invaders
"Dear Lord, give me the strength to face the day!"
This is the first thing I say when I open my eyes in the morning. This is 90 percent of the time done on the chair downstairs as this has my bed the majority of the time. oh there is so many things wrong with that but what are you gonna do? This is our normal for being blessed with what we have been given.
In 2011 we surpassed our record with flying colors in the medical and disability realm. See, don't tell me the Schillings aren't good at anything :). My 2 boys are already going for a record to try to beat it this year. Here is what is going on with the family in an attempted summary....
Ethan. On the outside he is doing so well. He is so happy most the time and is such a joy. He is a 2 and half year old that has been through more than most adults can say they have. Our recent discovery is that he has a bifid uvula. It means that it did not close all the way and is the mildest form of a cleft pallet. Wow, after a dozen scopes, and over 2 dozen doctors looking in there hundreds of times...now you find this?!?! Well, it has gotten the geneticist even more intrigued and has stumped now most of his regularly seen 11 doctors that everything going on with him is in the midline of his body. From the fused skull to the brain surgery to the aspiration, his bifid uvula all the way down to his boys not falling where they are supposed to fall. What does this mean...more blog today, more next week to go Houston to ty and see what is happening. To the geneticist it points more and more to a syndrome. Also, we now get to go see a cardiologist for a sedated and echo and other tests since this organ falls midline as well. Dear God, please don't let there be anything wrong with the heart....I think mine will break if his is broke... You see, 3 out of the 5 days of the week, my lunch consists of holding Ethan down for some tests or blood drawn or something that has to do with scrubs, a white coat or latex gloves......you think I would be skinnier by now.....so my little man has gone from coaching a baseball team of doctors to now heading up a football team with. A few on the side lines ready to jump in.
Then there is Nick.... Another life full of joy and innocence and thankfully that is how it is because Jackie and I sit everyday watching him slowly deteriorating. What do his doctors say? "for my area of speciality he looks good...go try ________!". Really? Over the past 8 months Nick has been diagnosed as failure to thrive on top of his other 5 disabilities. He is on a 5000 calorie a day diet just to maintain weight as long as he does not exert any energy. Even though he has CP, you try and stop a kid with autism from exerting energy...."ok...... He now uses a push chair/wheel chair for long distances and his gait and mobility is worsening. Even though he has a super high pain tolerance he will now tell you that his hips and knees hurt if of ask him. It is amazing because he does it with a smile and he never complains. The orthopedist recently did X-rays and tests and says that besides one femur being a little longer than the other everything, orthopedic ally, looks fine. She feels it is all neurological. What the ?!£$ does that mean? Is he having roe seizures, what condition does he have, is it going to get worse? Again, no one can tell us .....the big thing that scares me is we already had to get a minivan cently ochre could transfer easier into a car but we have a 2 story house and all the bedrooms and bathrooms are upstairs......ay dios mio! Next stop for him is back to neuro for more tests....
Then there is the diva Kiki......HOLY HELL, she is going to be trouble when she grows up. She has gone through seeing all this go on with her brothers and sees everyone caring for them it has really thrown her for a loop. She now gets to go to play therapy once a week and she is super excited. So much so that I had to talk to her teacher because she is telling all her classmates that she gets to see a therapist like her brothers. She needs this. It is all about her and she gets to run the show. She can rank 4 of the major local hospitals by there child life specialists rooms. Last time we were at the ER she told the doctor that she like dthe other room better that we were in last time because she liked the painting better. Really? She is a small version of her daddy. I have to met anyone so stubborn and strong willed. She will do well for her brothers. She is strong and beautiful.....
Jackie is the rock at the house. Yes when we are actually together for some appointments I am the one that loses it or cries and she is let's take it day by day. I don't work like that. I research, I ask, and I doubt everything in the medical field. The doctors are human, I get that, but it is not ok to do some of the things you do and try to get away with. I stay up late for night emergencies or autism wake ups or seizures so she can get up super early to do the tube feedings and medicines. She is s tired .....all the time...it breaks my heart.
Not sure what to do anymore . I work 2 full time jobs and come home to give her a break or pass out jut for a few minutes so I can get back to work.......
This leads us to the space invaders :). Without these space invaders, our life would not function and someone would have had to admit Jackie and I into a residential facility (hey, at least we would get some good drugs and sleep :))
Everyday of the week we have at least 1, more often, 5 people other than us in our home. During the week Ethan has 5 spech sessions for vital stim and language, 2 OT, 2 PT, a nurse, ECI and at least 3 to 4 attendants. Nick brings in 2 speech and 2 PT with a few attendants of his own. The attendants are phenomenal. So much that I have hit up a few to possibly come with us on a vacation at the end of summer....we will see if that happpens... They are truly part of our family and we love every single one of them as they love our kids.....
This weekend, for the first time in 6 years, Jackie and I will be gone from home and kids for a total of 36 hours. We are super excited and nervous. So nervous about the boys that we are only going 10 miles away in fear that there will be a hospital trip. Now, granted, we will probably sleep for 30 of those hours, but it will be so nice to wake up and not have to jump out of bed. It will be nice to sleep in a bed, with my wife, what a concept!
I am truly blessed. Despite all this going on, my family amazes me and it is through Christ alone that I get the strength to fight and support my family. He is in control....sure I let him know that if it true that He gives us only what you can handle, I tell him his expectations are too high :)
Not only do I find strength for my boys, but for the hundreds of people I work with that have disabilities. If I had to work with this many neuro typical people I would have jumped out of a moving car by now. People with disabilities, including my two boys, are the most under served population. I have been blessed with the gift of serving in the disability community.
Through Him, the strength is provided to face the world on a daily basis. And, if you know how stubborn and strong willed I am, I will not give up and I will not stop fighting for my family. If this is how it is going to be for my time here on Earth, so be it, jut bring on some Diet Coke and some prayer and all is good :)
This is the first thing I say when I open my eyes in the morning. This is 90 percent of the time done on the chair downstairs as this has my bed the majority of the time. oh there is so many things wrong with that but what are you gonna do? This is our normal for being blessed with what we have been given.
In 2011 we surpassed our record with flying colors in the medical and disability realm. See, don't tell me the Schillings aren't good at anything :). My 2 boys are already going for a record to try to beat it this year. Here is what is going on with the family in an attempted summary....
Ethan. On the outside he is doing so well. He is so happy most the time and is such a joy. He is a 2 and half year old that has been through more than most adults can say they have. Our recent discovery is that he has a bifid uvula. It means that it did not close all the way and is the mildest form of a cleft pallet. Wow, after a dozen scopes, and over 2 dozen doctors looking in there hundreds of times...now you find this?!?! Well, it has gotten the geneticist even more intrigued and has stumped now most of his regularly seen 11 doctors that everything going on with him is in the midline of his body. From the fused skull to the brain surgery to the aspiration, his bifid uvula all the way down to his boys not falling where they are supposed to fall. What does this mean...more blog today, more next week to go Houston to ty and see what is happening. To the geneticist it points more and more to a syndrome. Also, we now get to go see a cardiologist for a sedated and echo and other tests since this organ falls midline as well. Dear God, please don't let there be anything wrong with the heart....I think mine will break if his is broke... You see, 3 out of the 5 days of the week, my lunch consists of holding Ethan down for some tests or blood drawn or something that has to do with scrubs, a white coat or latex gloves......you think I would be skinnier by now.....so my little man has gone from coaching a baseball team of doctors to now heading up a football team with. A few on the side lines ready to jump in.
Then there is Nick.... Another life full of joy and innocence and thankfully that is how it is because Jackie and I sit everyday watching him slowly deteriorating. What do his doctors say? "for my area of speciality he looks good...go try ________!". Really? Over the past 8 months Nick has been diagnosed as failure to thrive on top of his other 5 disabilities. He is on a 5000 calorie a day diet just to maintain weight as long as he does not exert any energy. Even though he has CP, you try and stop a kid with autism from exerting energy...."ok...... He now uses a push chair/wheel chair for long distances and his gait and mobility is worsening. Even though he has a super high pain tolerance he will now tell you that his hips and knees hurt if of ask him. It is amazing because he does it with a smile and he never complains. The orthopedist recently did X-rays and tests and says that besides one femur being a little longer than the other everything, orthopedic ally, looks fine. She feels it is all neurological. What the ?!£$ does that mean? Is he having roe seizures, what condition does he have, is it going to get worse? Again, no one can tell us .....the big thing that scares me is we already had to get a minivan cently ochre could transfer easier into a car but we have a 2 story house and all the bedrooms and bathrooms are upstairs......ay dios mio! Next stop for him is back to neuro for more tests....
Then there is the diva Kiki......HOLY HELL, she is going to be trouble when she grows up. She has gone through seeing all this go on with her brothers and sees everyone caring for them it has really thrown her for a loop. She now gets to go to play therapy once a week and she is super excited. So much so that I had to talk to her teacher because she is telling all her classmates that she gets to see a therapist like her brothers. She needs this. It is all about her and she gets to run the show. She can rank 4 of the major local hospitals by there child life specialists rooms. Last time we were at the ER she told the doctor that she like dthe other room better that we were in last time because she liked the painting better. Really? She is a small version of her daddy. I have to met anyone so stubborn and strong willed. She will do well for her brothers. She is strong and beautiful.....
Jackie is the rock at the house. Yes when we are actually together for some appointments I am the one that loses it or cries and she is let's take it day by day. I don't work like that. I research, I ask, and I doubt everything in the medical field. The doctors are human, I get that, but it is not ok to do some of the things you do and try to get away with. I stay up late for night emergencies or autism wake ups or seizures so she can get up super early to do the tube feedings and medicines. She is s tired .....all the time...it breaks my heart.
Not sure what to do anymore . I work 2 full time jobs and come home to give her a break or pass out jut for a few minutes so I can get back to work.......
This leads us to the space invaders :). Without these space invaders, our life would not function and someone would have had to admit Jackie and I into a residential facility (hey, at least we would get some good drugs and sleep :))
Everyday of the week we have at least 1, more often, 5 people other than us in our home. During the week Ethan has 5 spech sessions for vital stim and language, 2 OT, 2 PT, a nurse, ECI and at least 3 to 4 attendants. Nick brings in 2 speech and 2 PT with a few attendants of his own. The attendants are phenomenal. So much that I have hit up a few to possibly come with us on a vacation at the end of summer....we will see if that happpens... They are truly part of our family and we love every single one of them as they love our kids.....
This weekend, for the first time in 6 years, Jackie and I will be gone from home and kids for a total of 36 hours. We are super excited and nervous. So nervous about the boys that we are only going 10 miles away in fear that there will be a hospital trip. Now, granted, we will probably sleep for 30 of those hours, but it will be so nice to wake up and not have to jump out of bed. It will be nice to sleep in a bed, with my wife, what a concept!
I am truly blessed. Despite all this going on, my family amazes me and it is through Christ alone that I get the strength to fight and support my family. He is in control....sure I let him know that if it true that He gives us only what you can handle, I tell him his expectations are too high :)
Not only do I find strength for my boys, but for the hundreds of people I work with that have disabilities. If I had to work with this many neuro typical people I would have jumped out of a moving car by now. People with disabilities, including my two boys, are the most under served population. I have been blessed with the gift of serving in the disability community.
Through Him, the strength is provided to face the world on a daily basis. And, if you know how stubborn and strong willed I am, I will not give up and I will not stop fighting for my family. If this is how it is going to be for my time here on Earth, so be it, jut bring on some Diet Coke and some prayer and all is good :)
Friday, September 23, 2011
Ethan.....the man, the myth
October 1st, next weekend, will mark such a special day for us. Ethan will be turning 2! I can not believe it. Oh the roller coaster we have been on. This boy is one of the most precious gifts that God has given us. We are humbled and covered in grace daily because of him. Ethan has been through more in his short little life than most have. I want to give you an insight of what my little man has been through in these 2 years.
Ethan was born term October 1st of 2009 already a sick little baby. He came out with extremely high numbers in jaundice and was wrapped in the blue light blanket and blue bed for days. Thankfully no transfusion was needed. We got him home and the first month went pretty well besides all his spitting up. I mean this stuff could have won an award for projection. We tried all different types of formulas and he finally was keeping most of the stuff down with a specialized one. He then began getting ear infections and RSV. We got a nebulizer and rotated steroids and albuterol to keep the pneumonia away. He continues to spit up all the time. Then he was diagnosed with GERD an put on Zantac. Still was not helping. He got RSV again and continued to get ear and sinus infections. Then referred to GI doc and he added Prevacid on top of the Zantac. By this time we are on our 14th ear infection so we get tubes put in. He is underweight and can not go under for tonsils and adenoids yet. He still continues to get ear infections....We then are referred to an immunologist. Weak immune system but no deficiency. We begin to notice a ridge that has been developing vertically from bridge of nose to top of head and then his "soft spot" sunken in. Go to neurologist and dismissed as all is well because he was comparing him to Nick and autism. GI doc had swallow study done. We find out he has been aspirating this entire time on his formula. Ethan was put on thickener and he began to eat again but continues to spit up and vomit. Then things went down hill. Many nights in a row we are woken up to Ethan choking and gasping for air in his sleep......What is going on?!?!??! We find out he is choking on his saliva and aspirating.
All this time, we still have no diagnosis and no one seems too concerned. We thankfully have friends that know of places so we were immediately referred to inpatient at OCH. Ethan was there for 36 days, had VitaStim done and put on a feeding regimen. Went to new neurologist and he took at CT scan and MRI. While in the hospital Ethan had more ear infections and got RSV again. Jackie and i started researching about the ridges in his head. We found out and confirmed with neurologist that he had Craniosynostosis. 2 of his 4 sutures in his skull fused too early. We come home discharged from OCH waiting for appt. with neurosurgeon and then Ethan stopped eating and became really sick. Three trips to the ER and we finally were admitted. After 11 days in the hospital Ethan had to get a tube placed in his stomach to keep him hydrated. Come home. He gets sick and go to ER and g-tube became severely infected. Had to go back to surgeon and then had to burn the infection around his g-tube site, which they still have to do to this day. While in the hospital for the do another MRI and looked at the pressure on his brain. We saw craniofacial surgeon and he stated no surgery is needed at the time. This is when they find that Ethan has Chiari Malformation. We go to neurosurgeon. Ethan's 2 fused sutures are ok for now but will need to be monitored, however, her needs to have brain surgery for the chiari. We schedule the surgery. In April he had a 6 hour brain surgery to decompress the cerebellum and widen the C1 vertebrae. We stay in ICU, move to floor then get transferred back to OCH for another month of Rehab and feeding. We get home May 12th and thankfully have only had 3 emergency room visits since then and no hospital stays. He is now being followed by 8 doctors and we continue to monitor his brain pressure on a semi-regular basis. ENT today said 90% of kids after tubes fall out which Ethan's are about to, are fine. He said Ethan will fall in the 10%. So soon he will have his adenoids and tonsils removed.
So, in 2 years our little guy has had over 140 doctor's appointments, 3 surgeries, seen by 17 doctors and 8 continue to follow. He gets ECI, speech, OT, PT nursing services and a WHOLE LOT OF LOVE.
God has been with Ethan through this all He is a fighter and stronger than I know I will ever be. I am amazed at the perseverance of this wonderful son my God gave me. Will he know what he has been though and more importantly, what he has accomplished and overcome? Only time will tell, where Ethan's path will lead. I pray everyday that no more surgeries are needed, that the pressure in his brain stays within normal limits, that he will drink again and not have to rely on his tube.
What we do know is that he is a miracle, he is a blessing and he is our son perfect in every way! Happy 2nd Birthday to Ethan on October 1st! You amaze me everyday!!!!!!
Ethan was born term October 1st of 2009 already a sick little baby. He came out with extremely high numbers in jaundice and was wrapped in the blue light blanket and blue bed for days. Thankfully no transfusion was needed. We got him home and the first month went pretty well besides all his spitting up. I mean this stuff could have won an award for projection. We tried all different types of formulas and he finally was keeping most of the stuff down with a specialized one. He then began getting ear infections and RSV. We got a nebulizer and rotated steroids and albuterol to keep the pneumonia away. He continues to spit up all the time. Then he was diagnosed with GERD an put on Zantac. Still was not helping. He got RSV again and continued to get ear and sinus infections. Then referred to GI doc and he added Prevacid on top of the Zantac. By this time we are on our 14th ear infection so we get tubes put in. He is underweight and can not go under for tonsils and adenoids yet. He still continues to get ear infections....We then are referred to an immunologist. Weak immune system but no deficiency. We begin to notice a ridge that has been developing vertically from bridge of nose to top of head and then his "soft spot" sunken in. Go to neurologist and dismissed as all is well because he was comparing him to Nick and autism. GI doc had swallow study done. We find out he has been aspirating this entire time on his formula. Ethan was put on thickener and he began to eat again but continues to spit up and vomit. Then things went down hill. Many nights in a row we are woken up to Ethan choking and gasping for air in his sleep......What is going on?!?!??! We find out he is choking on his saliva and aspirating.
All this time, we still have no diagnosis and no one seems too concerned. We thankfully have friends that know of places so we were immediately referred to inpatient at OCH. Ethan was there for 36 days, had VitaStim done and put on a feeding regimen. Went to new neurologist and he took at CT scan and MRI. While in the hospital Ethan had more ear infections and got RSV again. Jackie and i started researching about the ridges in his head. We found out and confirmed with neurologist that he had Craniosynostosis. 2 of his 4 sutures in his skull fused too early. We come home discharged from OCH waiting for appt. with neurosurgeon and then Ethan stopped eating and became really sick. Three trips to the ER and we finally were admitted. After 11 days in the hospital Ethan had to get a tube placed in his stomach to keep him hydrated. Come home. He gets sick and go to ER and g-tube became severely infected. Had to go back to surgeon and then had to burn the infection around his g-tube site, which they still have to do to this day. While in the hospital for the do another MRI and looked at the pressure on his brain. We saw craniofacial surgeon and he stated no surgery is needed at the time. This is when they find that Ethan has Chiari Malformation. We go to neurosurgeon. Ethan's 2 fused sutures are ok for now but will need to be monitored, however, her needs to have brain surgery for the chiari. We schedule the surgery. In April he had a 6 hour brain surgery to decompress the cerebellum and widen the C1 vertebrae. We stay in ICU, move to floor then get transferred back to OCH for another month of Rehab and feeding. We get home May 12th and thankfully have only had 3 emergency room visits since then and no hospital stays. He is now being followed by 8 doctors and we continue to monitor his brain pressure on a semi-regular basis. ENT today said 90% of kids after tubes fall out which Ethan's are about to, are fine. He said Ethan will fall in the 10%. So soon he will have his adenoids and tonsils removed.
So, in 2 years our little guy has had over 140 doctor's appointments, 3 surgeries, seen by 17 doctors and 8 continue to follow. He gets ECI, speech, OT, PT nursing services and a WHOLE LOT OF LOVE.
God has been with Ethan through this all He is a fighter and stronger than I know I will ever be. I am amazed at the perseverance of this wonderful son my God gave me. Will he know what he has been though and more importantly, what he has accomplished and overcome? Only time will tell, where Ethan's path will lead. I pray everyday that no more surgeries are needed, that the pressure in his brain stays within normal limits, that he will drink again and not have to rely on his tube.
What we do know is that he is a miracle, he is a blessing and he is our son perfect in every way! Happy 2nd Birthday to Ethan on October 1st! You amaze me everyday!!!!!!
Tuesday, July 26, 2011
Scared but try to remain faithful!
Ok, it's been awhile since I have ranted and I needed to get some time in.
So, the big news is Jackie finally gets to stay home. This is probably the stressed I have been since Ethan's surgery. It's not that she wanted to and we just decided, but the fact that she had to. No day care will still take Ethan even though he is doing much, much better and we could not ask my parents to place their life on hold for an additional year as they have already done this for the past 7 months. Oh man, is it gonna be tight. What do we cut, how will we do this?
We have prayed, discussed, argued, screamed, prayed some more, written down plans, etc....over and over again.
We were literally days away from moving out of state and take a chance, but it fell through. What was next, I don't know. After lots of prayer, we decided to take this leap of faith and believe that things will be ok.
I worry, ALL the time. Gone over scenarios, done mock monthly statements and wow, just raised my chance for a heart attack.
I have seen so many, "so happy for you's", and it stresses me out. Yes, I am happy for my wife, but no I am not enthusiastic about this situation. Now it's time to get a second part time job.
It's hard...why does life have to be so complicated. Sometimes, I just want to sit and be with Nick. Enjoy th most simple things life and have this aura of innocence and put on my pair of rainbow colored glasses....
Will Ethan benefit from this...ABSOLUTELY! And, this may be for only 1 to 2 years and Ethan will be in PPCD.
LOVE.FAITH.PRAYER.HOPE.LOVE.FAITH.PRAYER.HOPE.LOVE.FAITH.PRAYER.HOPE.LOVE
Some words were said to us recently, by all means of innocence, but hurt to the core about what we are going through and my children. Nobody, and yes, I mean noboday, understands what life is like and how to deal with children with disabilities unless you live it.
There are a handfull of things that we have been blessed with this summer. Ethan started walking, we had a semi-functional family vacation, and are having the msot wonderful summer serving students in HEROES. This may just be me, but everybody wouldbe a much better person after serving a day or two with students in HEROES. It is tiring, exhausting, hot, but absolutely the most amazing thing to do.
So, with the grace and mercy given to us, we know weill get through this. No matter what happens, we will always try to remain faithful!
So, the big news is Jackie finally gets to stay home. This is probably the stressed I have been since Ethan's surgery. It's not that she wanted to and we just decided, but the fact that she had to. No day care will still take Ethan even though he is doing much, much better and we could not ask my parents to place their life on hold for an additional year as they have already done this for the past 7 months. Oh man, is it gonna be tight. What do we cut, how will we do this?
We have prayed, discussed, argued, screamed, prayed some more, written down plans, etc....over and over again.
We were literally days away from moving out of state and take a chance, but it fell through. What was next, I don't know. After lots of prayer, we decided to take this leap of faith and believe that things will be ok.
I worry, ALL the time. Gone over scenarios, done mock monthly statements and wow, just raised my chance for a heart attack.
I have seen so many, "so happy for you's", and it stresses me out. Yes, I am happy for my wife, but no I am not enthusiastic about this situation. Now it's time to get a second part time job.
It's hard...why does life have to be so complicated. Sometimes, I just want to sit and be with Nick. Enjoy th most simple things life and have this aura of innocence and put on my pair of rainbow colored glasses....
Will Ethan benefit from this...ABSOLUTELY! And, this may be for only 1 to 2 years and Ethan will be in PPCD.
LOVE.FAITH.PRAYER.HOPE.LOVE.FAITH.PRAYER.HOPE.LOVE.FAITH.PRAYER.HOPE.LOVE
Some words were said to us recently, by all means of innocence, but hurt to the core about what we are going through and my children. Nobody, and yes, I mean noboday, understands what life is like and how to deal with children with disabilities unless you live it.
There are a handfull of things that we have been blessed with this summer. Ethan started walking, we had a semi-functional family vacation, and are having the msot wonderful summer serving students in HEROES. This may just be me, but everybody wouldbe a much better person after serving a day or two with students in HEROES. It is tiring, exhausting, hot, but absolutely the most amazing thing to do.
So, with the grace and mercy given to us, we know weill get through this. No matter what happens, we will always try to remain faithful!
Saturday, May 7, 2011
Mama's Day.....Far and Away!
Well, tomorrow is Mother's Day. I look forward going to church and then family lunch. One thing though, my wife, a phenomenal mother, will not be there. Ethan is still in the hospital until Tuesday. Actually, since the beginning of December he has been in the hospital for 67 days. I can not wait to have my wife and son back and pray that this will be it for a LONG time visiting hospitals.
I want to talk about my wife. What a selfless woman. You see, life has been kind of crappy for the past 4 months, but we have kept moving ahead. I mean, this is the hand we were dealt and we will roll with it :)
For the past 4 months, my wife and I have been separated for over half of them. She exhaustively is non-stop. Living at the hospital, taking care of Ethan, getting very little sleep and then going to work all day just to do it all over again. She works in Special Education as well, and I see it in her face, taking care of 9 other students everyday and taking care of their personal needs and then coming home to help with 2 of our own that need us. Should she be working.......NO.....does she have to.........YES and that sucks!!!
Jackie keeps to herself alot, whereas, if you know me I can talk to a wall. She has so much to say and so much knowledge to share and this stuff is beating her down. I miss her! Kiki is taking this the hardest. She is so ready for momma to come home.
I am just ready to go and do whatever, where ever the Lord takes us. We need a change, a BIG change.
There is so much on our plate right now, we are not sure which way is up or down. The kids issues are big enough to deal with and then this economy scares us to death......Remember the good ole days when they said oh just be a teacher...you'll always have a job :) Yeah right! Yes, Jackie and I are still blessed with having jobs and we are not complaining, but not sure how much is going to be cut yet. Then there is the HUGE proposed $1 Billion cut to Health and Human Services, which DADS falls under, which both my sons fall under.......AAAGGGHHHH! It's the lack of control that I can not handle, the lack of knowing.... Yes, I know, let go and let God! This is much easier said then done.
Why are we worried....because both my sons expenses a month in medical care is around $1700. This is just the maintenance stuff, not including tests, appointments, labs and therapies...... If this passes...what are we going to do. Jackie and I are slowly prepping the house for sale if this should happen and we will go wherever :) Who knows besides God??? Nobody.
I have been a pretty healthy guy over the past decade...nothing out of the usual besides the melanoma. Well, until about a month ago. Since last month, I ave had 3 anxiety attacks. This has been the most overwhelmed, antsy I have been sicne the college days cramming of No Dose and caffeine.
I worry...I worry all the time lately. Too much!!!!
With this all being said, my family is the greatest! We are very unique and very outspoken in our issues with our sons. Our main purpose is to help...help others who don't know as much about this stuff as we do. I would love just to be a family advocate and get what kids with disabilities need!
It's time for something different.....as long as we have our faith, family and friends we can do it.....
Happy Mother's Day to a wonderful woman, a beautiful wife and most of all an AMAZING mother! I love you!
I want to talk about my wife. What a selfless woman. You see, life has been kind of crappy for the past 4 months, but we have kept moving ahead. I mean, this is the hand we were dealt and we will roll with it :)
For the past 4 months, my wife and I have been separated for over half of them. She exhaustively is non-stop. Living at the hospital, taking care of Ethan, getting very little sleep and then going to work all day just to do it all over again. She works in Special Education as well, and I see it in her face, taking care of 9 other students everyday and taking care of their personal needs and then coming home to help with 2 of our own that need us. Should she be working.......NO.....does she have to.........YES and that sucks!!!
Jackie keeps to herself alot, whereas, if you know me I can talk to a wall. She has so much to say and so much knowledge to share and this stuff is beating her down. I miss her! Kiki is taking this the hardest. She is so ready for momma to come home.
I am just ready to go and do whatever, where ever the Lord takes us. We need a change, a BIG change.
There is so much on our plate right now, we are not sure which way is up or down. The kids issues are big enough to deal with and then this economy scares us to death......Remember the good ole days when they said oh just be a teacher...you'll always have a job :) Yeah right! Yes, Jackie and I are still blessed with having jobs and we are not complaining, but not sure how much is going to be cut yet. Then there is the HUGE proposed $1 Billion cut to Health and Human Services, which DADS falls under, which both my sons fall under.......AAAGGGHHHH! It's the lack of control that I can not handle, the lack of knowing.... Yes, I know, let go and let God! This is much easier said then done.
Why are we worried....because both my sons expenses a month in medical care is around $1700. This is just the maintenance stuff, not including tests, appointments, labs and therapies...... If this passes...what are we going to do. Jackie and I are slowly prepping the house for sale if this should happen and we will go wherever :) Who knows besides God??? Nobody.
I have been a pretty healthy guy over the past decade...nothing out of the usual besides the melanoma. Well, until about a month ago. Since last month, I ave had 3 anxiety attacks. This has been the most overwhelmed, antsy I have been sicne the college days cramming of No Dose and caffeine.
I worry...I worry all the time lately. Too much!!!!
With this all being said, my family is the greatest! We are very unique and very outspoken in our issues with our sons. Our main purpose is to help...help others who don't know as much about this stuff as we do. I would love just to be a family advocate and get what kids with disabilities need!
It's time for something different.....as long as we have our faith, family and friends we can do it.....
Happy Mother's Day to a wonderful woman, a beautiful wife and most of all an AMAZING mother! I love you!
Wednesday, April 20, 2011
It keeps spinning, and spinning and spinning
No, this is not about Nick and his spinning obsession, but maybe if I try spinning everything that possibly could I may feel better!
My head is spinning. I am at a delirious, hysterical point right now. Everything is funny to me. I have talked to every home health agency, attendant, doctors, hospitals and state agencies this week alone I am grateful for my unlimited minutes on my phone. Our case worker even asked me if I was ok today when I started laughing about Ethan's brain surgery and the extension of stay in rehab.
I am so grateful for the Lord giving me the gift of what I know.......and for being stubborn and loud mouthed :)
I had an interesting phone conversation with the state agency working with Ethan and Nick yesterday for their 6 month review. I will try to make this short as it went round and round....
them: It's time for Nick and Ethan's 6 month review
me: great when do we need to have this done
them: it is due this week
me: oh, wow, last minute huh? How about Wednesday.
them: ok Nick and Ethan need to be at the house because we have to "lay eyes on them". (this always makes me laugh, do they think we gave them away or they were cured over night)
me: minor problem, Nick is at school and Ethan is in the hospital
them: can we have them both at home
me: I can get Nick there for lunch and then take him back
them: what about Ethan
me: he is in the hospital until mid May. Remember we have talked about 5 times about this
them: oh, well how are we going to do our visit?
me: not sure, you tell me...
them: can I call you back tomorrow
me: sure :)
Kiki, 4 going on 20, asked the inevitable question yesterday. "Daddy, why did God give Nick and Ethan disabilities?"
I honestly don't remember what exactly I said, but it went over well because she of course was excited to be able to "teach" them things :)
I am so excited for this Easter. Jackie and Ethan get to come home for 6 hours so we can be together. Not in time for church but later in the day to spend time with the family for lunch. Yes, our lives are chaotic but so filled with love, joy and faith. God is good.
Jackie, my wife, my love, my friend......what a strong woman!!!!!! I could not be living at the hospital for 4-5 weeks and do what she does. She sleeps there dealing with Ethan, gets up, showers, goes straight to work, leaves and goes straight back to the hospital hoping that someone will keep her company and get her some food for the day. This is day after day after day............I know I could not do it. I would have jumped out the window already (and that wouldn't do much since we are on the first floor).
Nick's attendant, Charlie, is a saving grace as well. He is running our house on the evenings I have to work. We have therapists Monday thru Thursday coming in and out, he takes care of Nick and makes sure Kiki gets what she needs and she has people there to play with until I get home. Could not do it without him.
Ethan is a lucky little boy, and if he was a few years older he would realize this. He now has 4 different young ladies as his attendants and they are ready to rock as soon as he gets him.
We have friends and family constantly praying and bringing food and good thoughts.......the saying is true: It takes a village!
I am so excited for HEROES camp this summer. WE have anywhere from 72-81 campers a week. We have so much planned to best serve all our students. Never in a million years would I have thought something that started so small and as a trial, would be something that grows this big in 6 years. We are blessed to serve around 200 families that have children with disabilities every summer. The best part is, while out in the community working with our students, is educating society about the disability community.
I wish people had more faith in people with disabilities. If we get harassed one more time about why we do not have Nick on the wait list for a sheltered workshop I am going to blow. In my opinion, I have never seen or toured one of these that I would put my pet at much less my child. Granted, some people have to because there is nowhere else, but I am not a fan! Sorry, Nick can do more than get $.25 a Mary Kay box he puts together while not being supervised.
Sometimes, I think life would be so much better if I was only surrounded and worked with people with cognitive disabilities. It is the "typical" people that drive me crazy...........
This weekend, I was able to run in the Warrior Dash. It was a blast and I loved it. The only thing O would have changed is I wish Jackie was there and I could convince her to run it with me. It has been so long since I was able to do something like this, I really "forgot" what is was like to have fun. Crawling in mud, running, jumping over fire.....not once did I think about which doctor or agency that I needed to call or what I needed to plan or schedule. I can not wait for eh Hell Run in November.......
I eventually want to get Nick to do something like this with me. Yes, I know, it sounds crazy. But, I am not in it to win, but what an accomplishment for him....something else that people never would think he could do. I always go back to TEAM HOYT. Whenever I get frustrated and beat down, this video clip makes me tear up and gets me back in focus. ANYTHING is possible..... :)
My head is spinning. I am at a delirious, hysterical point right now. Everything is funny to me. I have talked to every home health agency, attendant, doctors, hospitals and state agencies this week alone I am grateful for my unlimited minutes on my phone. Our case worker even asked me if I was ok today when I started laughing about Ethan's brain surgery and the extension of stay in rehab.
I am so grateful for the Lord giving me the gift of what I know.......and for being stubborn and loud mouthed :)
I had an interesting phone conversation with the state agency working with Ethan and Nick yesterday for their 6 month review. I will try to make this short as it went round and round....
them: It's time for Nick and Ethan's 6 month review
me: great when do we need to have this done
them: it is due this week
me: oh, wow, last minute huh? How about Wednesday.
them: ok Nick and Ethan need to be at the house because we have to "lay eyes on them". (this always makes me laugh, do they think we gave them away or they were cured over night)
me: minor problem, Nick is at school and Ethan is in the hospital
them: can we have them both at home
me: I can get Nick there for lunch and then take him back
them: what about Ethan
me: he is in the hospital until mid May. Remember we have talked about 5 times about this
them: oh, well how are we going to do our visit?
me: not sure, you tell me...
them: can I call you back tomorrow
me: sure :)
Kiki, 4 going on 20, asked the inevitable question yesterday. "Daddy, why did God give Nick and Ethan disabilities?"
I honestly don't remember what exactly I said, but it went over well because she of course was excited to be able to "teach" them things :)
I am so excited for this Easter. Jackie and Ethan get to come home for 6 hours so we can be together. Not in time for church but later in the day to spend time with the family for lunch. Yes, our lives are chaotic but so filled with love, joy and faith. God is good.
Jackie, my wife, my love, my friend......what a strong woman!!!!!! I could not be living at the hospital for 4-5 weeks and do what she does. She sleeps there dealing with Ethan, gets up, showers, goes straight to work, leaves and goes straight back to the hospital hoping that someone will keep her company and get her some food for the day. This is day after day after day............I know I could not do it. I would have jumped out the window already (and that wouldn't do much since we are on the first floor).
Nick's attendant, Charlie, is a saving grace as well. He is running our house on the evenings I have to work. We have therapists Monday thru Thursday coming in and out, he takes care of Nick and makes sure Kiki gets what she needs and she has people there to play with until I get home. Could not do it without him.
Ethan is a lucky little boy, and if he was a few years older he would realize this. He now has 4 different young ladies as his attendants and they are ready to rock as soon as he gets him.
We have friends and family constantly praying and bringing food and good thoughts.......the saying is true: It takes a village!
I am so excited for HEROES camp this summer. WE have anywhere from 72-81 campers a week. We have so much planned to best serve all our students. Never in a million years would I have thought something that started so small and as a trial, would be something that grows this big in 6 years. We are blessed to serve around 200 families that have children with disabilities every summer. The best part is, while out in the community working with our students, is educating society about the disability community.
I wish people had more faith in people with disabilities. If we get harassed one more time about why we do not have Nick on the wait list for a sheltered workshop I am going to blow. In my opinion, I have never seen or toured one of these that I would put my pet at much less my child. Granted, some people have to because there is nowhere else, but I am not a fan! Sorry, Nick can do more than get $.25 a Mary Kay box he puts together while not being supervised.
Sometimes, I think life would be so much better if I was only surrounded and worked with people with cognitive disabilities. It is the "typical" people that drive me crazy...........
This weekend, I was able to run in the Warrior Dash. It was a blast and I loved it. The only thing O would have changed is I wish Jackie was there and I could convince her to run it with me. It has been so long since I was able to do something like this, I really "forgot" what is was like to have fun. Crawling in mud, running, jumping over fire.....not once did I think about which doctor or agency that I needed to call or what I needed to plan or schedule. I can not wait for eh Hell Run in November.......
I eventually want to get Nick to do something like this with me. Yes, I know, it sounds crazy. But, I am not in it to win, but what an accomplishment for him....something else that people never would think he could do. I always go back to TEAM HOYT. Whenever I get frustrated and beat down, this video clip makes me tear up and gets me back in focus. ANYTHING is possible..... :)
Friday, April 1, 2011
Autism UN-Awareness, disability snobs and Reality Check
Well, here goes nothing. I am at a point in my life where if I do not do something just to get it out of my head, I am going to punch someone and pretty damn hard! So, I am going to give random thoughts tonight about things/thoughts tha thave been building and I need to talk about......
Note: I do not need sympathy or empathy....I am HAPPY....tired, exhausted, stressed, and anxious, but Happy and Blessed!
So, the whole autism thing. I am a passionate man about my son with autism and about working with literally hundreds of people with autism. It seems to me this year that Autism Awareness is the new fad and the new trand to be "aware" about. However, are people really aware? Not so sure.......
See...now here is where my ADHD brain kicks in and I switch topics becasue I jsut thought of it :)
Now a piece that really gets under my skin....... DISABILITY SNOBS! These are the parents that usually have children that typically are higher functioning and can look as a neuro typical kiddo from afar before a conversastion begins!!! Well, today I have read and ran into a few people that really need to do a reality check....
Today I heard a person say, " no I never knew any of them (referring to people with autism) but I gre up with "retarded" kids in school............Dear Lord! Really? Really?
I also read about someone whining about how her kid is in the lowest reading group and is he going to be able to be in something like AP classes or whatever. Well, helloooooo, reality check!!! What I would not give to have my son shower by himself, not have an accident in a store becasue he could not physically unbutton his pants, or fall down and have a seizure while losing bladder and bowel control. To even to be able to utter ONE word!!!!!
Now, if you're reading this you know Nick. He is by far one of the most interesting and fantastic people I know. This young man has taught me more than any other human being or text book could ever do or teach.
Yes we have been looked at by those disability snobs and ovehear is my child going to be in "his" group. Sorry, we don't worry about if we wll ever get into Pre-Cal over here...we worry about what are our next steps to faciltiate Nick in becoming the contributing member of society that he WILL be.
TOPIC CHANGE:
My Bubba ...Ethan. All this still is a little unreal! Really, a week from today I will be sitting in ICU. It did not hit me how serious this is and thought oh this is not happening he will be fine. Until I made the caring bridge website. Hey, these websites are for the severe sick and surgeries....oh, wait, this is serious. Yes, I am a planner, and do not like surprises. SO, for about a week now I watch these brain surgeries on web sites and prep for how he will look after.....I ask myself over and over!?!? Will the halo be off, how swollen will he be......can I really sit for 6 hours and WAIT . For those who know me, it is EXTREMELY difficult for me to sit stil lfor 6 seconds:" Will this get him off the pump, will he stop choking, will he eat and drink? Hundreds and hundreds of questions and I know I do not have the answers...........
SWTICH AGAIN......to my Princess Kiki
Jackie and I want to pull our hair out, scream, and lvoe and kiss her all at the same time. How much slack do we cut? What is it like for a 4 year old trying to learn how to "be" when at home your 2 siblings have significant disabilites. I sit and cry wanting the best vor her and tyr to figure out how to manage some time, any time even a second that we can focus soley on her and not worry about what doctor, attendant, home health agency and/or medication is present leacking or nonexistent..... Will she ever know, that despite meeting the needs of Nick and Ethan continuosuly that she is jsut as loved, special and important to us. I feel like a failed father. She dies to have people over and we can't....with therapists and sicknesses and everything else and no time......
Change.........
How do you fit it all in? How do you be a better father and husband. I work about 80 hours a week. This would be fine except my wife works full time as well. Our first thoughts are what bills ae coming in, and what do we have to pay off........ it's sad becasue I knoe what I should be doing. I should be playing at the park with Kiki, eating a family dinner riding the DART with Nick to his favorite restaurant......
MEET OUR EXTENDED FAMILY:
Besides our immediate family, these ar ethe people we talk to on a regular basis:
Epic Med Staff, Precious Care, Medo Medical Supply, R-Tech Medical Supply, Berry Family Services, Dallas MetroCare, MDCP, CCP, Dr. Swift, Dr. Sparagana. Dr. Lin, Dr. Carol, Dr. Renard, Dr. Gottlieb.....
Oh I pray....I pray all the time. I need patience, I need wisdom, I need strength,,,,,,
One thing I do know. I have been given a gift. A gift I never thought I would have wanted or been able to do, Besides faith, family and friends....working with individuals with disabilities...... The Lord has blessed me with this,,,,the patience, the wisdom and the strength.......
Myr profession makes me a better FATHER and my family makes me a better EDUCATOR!
A reason fo everything....wow I hate this saying.....but God, it is so true.....
What's killing me is my lack of control of the situation the small and the big.......
So, as I sit here while one son is upstairs stimming and one lays here hooked up to a feeding pump I think.........I know.....I am BLESSED. Just breathe......
I may not be PC in my post, I am very random and since I can not burden my wife with my stresses and she is asleep anyway, you get to read them...
So , no I'm sorrys or no hang in there.....This is my sounding board....and thanks for coming along for the ride!
Note: I do not need sympathy or empathy....I am HAPPY....tired, exhausted, stressed, and anxious, but Happy and Blessed!
So, the whole autism thing. I am a passionate man about my son with autism and about working with literally hundreds of people with autism. It seems to me this year that Autism Awareness is the new fad and the new trand to be "aware" about. However, are people really aware? Not so sure.......
See...now here is where my ADHD brain kicks in and I switch topics becasue I jsut thought of it :)
Now a piece that really gets under my skin....... DISABILITY SNOBS! These are the parents that usually have children that typically are higher functioning and can look as a neuro typical kiddo from afar before a conversastion begins!!! Well, today I have read and ran into a few people that really need to do a reality check....
Today I heard a person say, " no I never knew any of them (referring to people with autism) but I gre up with "retarded" kids in school............Dear Lord! Really? Really?
I also read about someone whining about how her kid is in the lowest reading group and is he going to be able to be in something like AP classes or whatever. Well, helloooooo, reality check!!! What I would not give to have my son shower by himself, not have an accident in a store becasue he could not physically unbutton his pants, or fall down and have a seizure while losing bladder and bowel control. To even to be able to utter ONE word!!!!!
Now, if you're reading this you know Nick. He is by far one of the most interesting and fantastic people I know. This young man has taught me more than any other human being or text book could ever do or teach.
Yes we have been looked at by those disability snobs and ovehear is my child going to be in "his" group. Sorry, we don't worry about if we wll ever get into Pre-Cal over here...we worry about what are our next steps to faciltiate Nick in becoming the contributing member of society that he WILL be.
TOPIC CHANGE:
My Bubba ...Ethan. All this still is a little unreal! Really, a week from today I will be sitting in ICU. It did not hit me how serious this is and thought oh this is not happening he will be fine. Until I made the caring bridge website. Hey, these websites are for the severe sick and surgeries....oh, wait, this is serious. Yes, I am a planner, and do not like surprises. SO, for about a week now I watch these brain surgeries on web sites and prep for how he will look after.....I ask myself over and over!?!? Will the halo be off, how swollen will he be......can I really sit for 6 hours and WAIT . For those who know me, it is EXTREMELY difficult for me to sit stil lfor 6 seconds:" Will this get him off the pump, will he stop choking, will he eat and drink? Hundreds and hundreds of questions and I know I do not have the answers...........
SWTICH AGAIN......to my Princess Kiki
Jackie and I want to pull our hair out, scream, and lvoe and kiss her all at the same time. How much slack do we cut? What is it like for a 4 year old trying to learn how to "be" when at home your 2 siblings have significant disabilites. I sit and cry wanting the best vor her and tyr to figure out how to manage some time, any time even a second that we can focus soley on her and not worry about what doctor, attendant, home health agency and/or medication is present leacking or nonexistent..... Will she ever know, that despite meeting the needs of Nick and Ethan continuosuly that she is jsut as loved, special and important to us. I feel like a failed father. She dies to have people over and we can't....with therapists and sicknesses and everything else and no time......
Change.........
How do you fit it all in? How do you be a better father and husband. I work about 80 hours a week. This would be fine except my wife works full time as well. Our first thoughts are what bills ae coming in, and what do we have to pay off........ it's sad becasue I knoe what I should be doing. I should be playing at the park with Kiki, eating a family dinner riding the DART with Nick to his favorite restaurant......
MEET OUR EXTENDED FAMILY:
Besides our immediate family, these ar ethe people we talk to on a regular basis:
Epic Med Staff, Precious Care, Medo Medical Supply, R-Tech Medical Supply, Berry Family Services, Dallas MetroCare, MDCP, CCP, Dr. Swift, Dr. Sparagana. Dr. Lin, Dr. Carol, Dr. Renard, Dr. Gottlieb.....
Oh I pray....I pray all the time. I need patience, I need wisdom, I need strength,,,,,,
One thing I do know. I have been given a gift. A gift I never thought I would have wanted or been able to do, Besides faith, family and friends....working with individuals with disabilities...... The Lord has blessed me with this,,,,the patience, the wisdom and the strength.......
Myr profession makes me a better FATHER and my family makes me a better EDUCATOR!
A reason fo everything....wow I hate this saying.....but God, it is so true.....
What's killing me is my lack of control of the situation the small and the big.......
So, as I sit here while one son is upstairs stimming and one lays here hooked up to a feeding pump I think.........I know.....I am BLESSED. Just breathe......
I may not be PC in my post, I am very random and since I can not burden my wife with my stresses and she is asleep anyway, you get to read them...
So , no I'm sorrys or no hang in there.....This is my sounding board....and thanks for coming along for the ride!
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