My attitude has greatly improved after a weekend with friends and family. Especially yesterday at the market. So many family members and friends have shown up to the Market to visit, even on cold rainy days like yesterday, knowing how important it is to me. I can't believe the support that I've gotten from everybody in this endeavor. Its been hard work, and honestly, I'm looking forward to the end, but I still have next Sunday and the 2 day holiday market the first weekend in December, and even more family have promised to attend and show support, so I'm looking forward to that. The management must like me too, because I was the 'featured seller' in the Market bulletin, and my bags were featured on a "This 'n That" segment Friday at noon on Channel 9!
Manny's MRI is rescheduled for 3 weeks from now. Thursday his OT from BCW came by, and, giving the fact that I still hadn't stopped crying from my mental breakdown on Wednesday, I completely forgot, and Manny was asleep when she showed up, making for a miserable OT appointment. I explained, and promised to be more prepared during the next session. Manny is still attending the pre-school 2 days per week and is doing really well. The teachers seem happy to have him, and he doesn't cry and plays well when he is there.
Jake is doing wonderfully, both in school and at home. We had another meeting last week to discuss him getting occupational therapy at school. The OT denied him saying that the sort of OT that he needs (deep pressure, sensory, balance, etc) isn't the kind of therapy that she's comfortable giving saying "You know how people are these days, they might not understand seeing me roll a child in a run and giving them deep pressure." Ugh, so... you aren't comfortable doing your job. I will continue to do what I can to meet his needs in that respect at home, and more than likely we will pay out-of-pocket again this summer to go see Cindy at Tips.
I'm off to start a new week. I'm hoping that the Thanksgiving shopping rush includes my store this year. I was desperately hoping for a couple of hours of childcare for Manny this morning, but Mamaw just returned from a 2 week stay at my Aunt's house. She seems to be doing well, but sounded tired yesterday when I spoke to her so I didn't ask. My goal today, even with Manny's help, is to do inventory and get my shop in order for the upcoming (*hopefully*) shopping rush, finish some orders that have become a bit late, ship everything that needs shipping, take pictures, and put up listings. In other words, I need to get rid of this sinking feeling that I'm falling further and further behind. Off to get started!
Monday, November 23, 2009
Wednesday, November 18, 2009
The MRI appointment that wasn't
I got everything packed and ready for our trip last night. Steve took today off of work so that he could get Jake on and off the bus and spend time with him this afternoon. The MRI appointment was at 8 with registration at 7 AM, along with the hearing test, blood panel and then a follow up visit with Dr. Agulera (hemi/onc) at 3 PM. We were in it for the long haul today.
I woke up at 4:30 this morning, got dressed, then changed a sleeping Manny's diaper and was in the car by 5 AM. I arrived at the hospital shortly before 7 and went to registration. During registration, while I filled out the mound of paperwork, Manny began fussing and got out his sippy. He had two sips, and I was right there... letting him, when the receptionist said, "If he's a sedate he can't have that." Oh yeah, I thought, and took it away. She sent me across the hall, and informed the receptionist at MRI that he'd drank fluids. They sent us home, because his appointment could not be moved up one hour, they were too full. The nurse from MRI who informed me giggled and shrugged and said, at least three times "Well, at least you'll never forget again." "Like I said before, you won't forget again." I get it, lady, you're sending me home as punishment for not following hospital orders. I was sobbing, and had been since the first receptionist chastised me and asked me "Didn't they tell you? It says here that they talked to your husband yesterday, did he not tell you no fluids after 6 AM?" YES, everybody fucking told me... I'm an idiot. I get it. This is the first time I'v broken down during any doctor's appointment. I cried all the way home, and I'm still upset. I hate this.
Maybe contributing to my "bad attitude" is the fact that Manny never sleeps. On a typical night, he goes to bed just fine, around 8:30 or so. He's no trouble at all to put to sleep. He regularly wakes up around midnight or 1 AM and is awake until 4 or 5 AM. Sometimes he's just awake, sometimes he cries the whole time. We've tried a zillion different methods, he's been checked for ear issues, reflux, and a host of other things. I get a lot of advice on this, and all that makes me sure of is.. we're doing that wrong too. I haven't had a night of this that I didn't end up breaking down for at least a couple of hours in the middle of the night. Steve and I tag-team dealing with him every night. After many nights of this he will usually sleep for a couple of nights all night, making us think.. really? is it over? Then he goes back to no-sleep. The nights that he does sleep, I wake up constantly, wondering if he's OK.. because if he's not awake, then is he breathing? If he sleeps late or naps during the day, I have work to do, or Jake to care for, or something. Sometimes Steve's parents actually ASK to take him during the night, so that we can rest. I'm grateful, I really am. I think the last night at her house wore her down a lot though.
Its wearing on my sanity, laying there with him... feeling him get still, then holding my breath, literally. Is he asleep? Surely he is, he's been up since midnight. Oh gosh, I have to pee/cough/move my foot because its asleep, but I won't. I'll be still... ten whole minutes.. Nope, he's still awake, and I have to get Jake ready for school in 45 minutes. Oh God, make it stop.
Sometimes I have horrible thoughts after night after night of this. I honestly feel sometimes like I've done something WRONG by having children. I should have known. I've never been a happy person by myself, but when I met Steve, it was like the light finally shined into my life. Nothing could go wrong. But now, not only have I created a miserable partner, watching me be unable to bring myself up out of whatever is wrong with me, but I've created two children who seem also to spend most of their time being miserable. I should have known I wasn't capable of dealing with this, and I should have made better decisions. I feel like I've created some sort of black hole and that I should have stayed alone. I don't feel right asking anyone to care for my kids because I can't stand the run-down of how miserable they made the caregiver. I can't even understand why Granny and Pops even want to deal with them. I know they love them, but they have the option to love them from a distance, and thats gotta be too hard to pass up. A comment was made about what hell I put my parents through as a teenager in regards to the trouble I'm having dealing with my own emotions. Does that mean that it "serves me right" that I have disabled children because I was a bad kid? Have I not done anything good enough EVER just to deserve to hear Manny say "Mama."?
I guess whining doesn't really help anything. I was hoping to get everything over with today, and get whatever news it would be. Good news? Will any future appointments with Manny ever be "good news?" I'm afraid that they'll be either "nothing has changed" or "the tumors are growing." Staying the same being the "good news". I'll reschedule all of the appointments, and try this again, and yeah... I won't EVER forget not to give Manny fluids before any of the dozens and dozens of MRIs that he is certian to get in the future.
I woke up at 4:30 this morning, got dressed, then changed a sleeping Manny's diaper and was in the car by 5 AM. I arrived at the hospital shortly before 7 and went to registration. During registration, while I filled out the mound of paperwork, Manny began fussing and got out his sippy. He had two sips, and I was right there... letting him, when the receptionist said, "If he's a sedate he can't have that." Oh yeah, I thought, and took it away. She sent me across the hall, and informed the receptionist at MRI that he'd drank fluids. They sent us home, because his appointment could not be moved up one hour, they were too full. The nurse from MRI who informed me giggled and shrugged and said, at least three times "Well, at least you'll never forget again." "Like I said before, you won't forget again." I get it, lady, you're sending me home as punishment for not following hospital orders. I was sobbing, and had been since the first receptionist chastised me and asked me "Didn't they tell you? It says here that they talked to your husband yesterday, did he not tell you no fluids after 6 AM?" YES, everybody fucking told me... I'm an idiot. I get it. This is the first time I'v broken down during any doctor's appointment. I cried all the way home, and I'm still upset. I hate this.
Maybe contributing to my "bad attitude" is the fact that Manny never sleeps. On a typical night, he goes to bed just fine, around 8:30 or so. He's no trouble at all to put to sleep. He regularly wakes up around midnight or 1 AM and is awake until 4 or 5 AM. Sometimes he's just awake, sometimes he cries the whole time. We've tried a zillion different methods, he's been checked for ear issues, reflux, and a host of other things. I get a lot of advice on this, and all that makes me sure of is.. we're doing that wrong too. I haven't had a night of this that I didn't end up breaking down for at least a couple of hours in the middle of the night. Steve and I tag-team dealing with him every night. After many nights of this he will usually sleep for a couple of nights all night, making us think.. really? is it over? Then he goes back to no-sleep. The nights that he does sleep, I wake up constantly, wondering if he's OK.. because if he's not awake, then is he breathing? If he sleeps late or naps during the day, I have work to do, or Jake to care for, or something. Sometimes Steve's parents actually ASK to take him during the night, so that we can rest. I'm grateful, I really am. I think the last night at her house wore her down a lot though.
Its wearing on my sanity, laying there with him... feeling him get still, then holding my breath, literally. Is he asleep? Surely he is, he's been up since midnight. Oh gosh, I have to pee/cough/move my foot because its asleep, but I won't. I'll be still... ten whole minutes.. Nope, he's still awake, and I have to get Jake ready for school in 45 minutes. Oh God, make it stop.
Sometimes I have horrible thoughts after night after night of this. I honestly feel sometimes like I've done something WRONG by having children. I should have known. I've never been a happy person by myself, but when I met Steve, it was like the light finally shined into my life. Nothing could go wrong. But now, not only have I created a miserable partner, watching me be unable to bring myself up out of whatever is wrong with me, but I've created two children who seem also to spend most of their time being miserable. I should have known I wasn't capable of dealing with this, and I should have made better decisions. I feel like I've created some sort of black hole and that I should have stayed alone. I don't feel right asking anyone to care for my kids because I can't stand the run-down of how miserable they made the caregiver. I can't even understand why Granny and Pops even want to deal with them. I know they love them, but they have the option to love them from a distance, and thats gotta be too hard to pass up. A comment was made about what hell I put my parents through as a teenager in regards to the trouble I'm having dealing with my own emotions. Does that mean that it "serves me right" that I have disabled children because I was a bad kid? Have I not done anything good enough EVER just to deserve to hear Manny say "Mama."?
I guess whining doesn't really help anything. I was hoping to get everything over with today, and get whatever news it would be. Good news? Will any future appointments with Manny ever be "good news?" I'm afraid that they'll be either "nothing has changed" or "the tumors are growing." Staying the same being the "good news". I'll reschedule all of the appointments, and try this again, and yeah... I won't EVER forget not to give Manny fluids before any of the dozens and dozens of MRIs that he is certian to get in the future.
Sunday, November 1, 2009
OT evaluation, and "The Bug"
Manny's evaluation with the Occupational Therapist from Babies Can't wait was Thursday. S.H. stayed for about 30 minutes and asked a few questions about Manny. Honestly, I haven't been impressed with BCW this time around. Its been over a month since his arena evaluation, and now we're set up with an O.T for once every other week.. and she doesn't seem flexible at all with her schedule since she only comes to Dalton about one day every two weeks. In fact, what we really need is a SPEECH therapist, since his speech is the most delayed. Children of Manny's age should have a vocabulary of over 500 words and should be speaking in short sentences. Manny, still, only has a couple of partial words. I jumped the gun when he started saying "car" and made the video. He has not said that word since that day. I suppose I am going to have to start pushing the issue and get him private speech therapy, whether paid for by the State (which we are entitled to) or paid for out of pocket.
I am enrolling Manny in the preschool at the church just a mile from here. It is the same school where we tried to send Jake a couple of years ago and it didn't work out (through absolutely no fault of their own). Even though his birthday is one week past the deadline, I found out from a friend who works there (thanks Holly) that there are only three boys in the two-year-old class, and two teachers. The director said they'd be glad to have him. He will be attending 2 mornings per week for just about 3 hours. It will be great for him to be around typically developing children of his age. I really hope it works out. My stomach churns with every endeavor like this, since I've never had good luck with.. well... anything concerning being a parent.
This Friday evening the Carithers family was supposed to come up for a visit, spend the weekend, go trick-or-treating, put the kids to bed, party like adults Halloween night, go leaf-looking and whatever else we could get outselves into. Friday morning I awoke with a bit of a scratchy throat, but Steve got Jake off to school and I dealt with the five poodles that were dropped off at 6:30 AM. By 7:45 AM I was curled up in a ball sweating and shivering with fever and in pain from head to toe. Yup.. the FLU! I tried to finish the poodles with Manny tied to my back but simply couldn't do it. The school called to let us know that Jake was passed out in the floor, also with a fever. Steve took Manny with him to pick up Jake while I fell asleep in Manny's room (for some reason). He returned and told me the amazing news that Pops was coming to the rescue. Get this, even though Steve's mom was out of town, Pops showed up and snatched Manny for the entire day. I don't really know what would have happened otherwise. Steve's work-day was too demanding for a day off.
So... the entire weekend of fun was called off and I am finally on the road to recovery after a couple of rough days. Jake is off-and-on feeling better, Manny is just now getting the flu, and Steve is... well, we're crossing our fingers for him. He took care of me and waited on me hand and foot all weekend. I hope I don't have to return the favor to him under the same circumstances. I'd rather be nice to a well husband. I don't know what I'd do without the amazing men in my life.
Another work-week starts tomorrow. The Parents.com was supposed to come out "end of October".. and I haven't heard anything. I'm getting worried. Its Ok, though, I have a lot of stock and sick kids to take care of. Work can wait.
(Below) "Flu-stock 2009"
I am enrolling Manny in the preschool at the church just a mile from here. It is the same school where we tried to send Jake a couple of years ago and it didn't work out (through absolutely no fault of their own). Even though his birthday is one week past the deadline, I found out from a friend who works there (thanks Holly) that there are only three boys in the two-year-old class, and two teachers. The director said they'd be glad to have him. He will be attending 2 mornings per week for just about 3 hours. It will be great for him to be around typically developing children of his age. I really hope it works out. My stomach churns with every endeavor like this, since I've never had good luck with.. well... anything concerning being a parent.
This Friday evening the Carithers family was supposed to come up for a visit, spend the weekend, go trick-or-treating, put the kids to bed, party like adults Halloween night, go leaf-looking and whatever else we could get outselves into. Friday morning I awoke with a bit of a scratchy throat, but Steve got Jake off to school and I dealt with the five poodles that were dropped off at 6:30 AM. By 7:45 AM I was curled up in a ball sweating and shivering with fever and in pain from head to toe. Yup.. the FLU! I tried to finish the poodles with Manny tied to my back but simply couldn't do it. The school called to let us know that Jake was passed out in the floor, also with a fever. Steve took Manny with him to pick up Jake while I fell asleep in Manny's room (for some reason). He returned and told me the amazing news that Pops was coming to the rescue. Get this, even though Steve's mom was out of town, Pops showed up and snatched Manny for the entire day. I don't really know what would have happened otherwise. Steve's work-day was too demanding for a day off.
So... the entire weekend of fun was called off and I am finally on the road to recovery after a couple of rough days. Jake is off-and-on feeling better, Manny is just now getting the flu, and Steve is... well, we're crossing our fingers for him. He took care of me and waited on me hand and foot all weekend. I hope I don't have to return the favor to him under the same circumstances. I'd rather be nice to a well husband. I don't know what I'd do without the amazing men in my life.
Another work-week starts tomorrow. The Parents.com was supposed to come out "end of October".. and I haven't heard anything. I'm getting worried. Its Ok, though, I have a lot of stock and sick kids to take care of. Work can wait.
(Below) "Flu-stock 2009"
Tuesday, October 20, 2009
R.I.P. Papaw Doyle
The weekend was a whirlwind of activity for us. Some wonderful things happened that I totally planned on blogging about, however, I felt it more necessary to spend my time talking about Papaw Doyle.
We arrived home from our adventures on Saturday night, and Steve retrieved the kids from Granny and Pop's early Sunday morning. I called my mom, who had expressed a desire to see the kids on Sunday but got no answer. When I was able to reach her she said that Papaw was doing badly, and was in the SICU at Hamilton Medical center. Just from the information that I had gleaned in the past few days from Mamaw and others, I knew that he must be close to the end. I said I'd come up there, and left Steve with the boys for a short trip to the hospital.
As soon as I got there I was greeted by several family members and told to go on back to his room, as visiting hours were about to end. I steeled myself, conjuring up the image of my maternal grandmother, when I had visited her in the same SICU, shortly before her death, and tried to prepare myself. It didn't work. I asked Mamaw if Papaw could hear me. She said, "Of course!" and leaned close to him and said "Jessica is here." Although he looked like a burn victim due to a bad rash that was being treated, and his eyes looked like tiny little pig-eyes when they opened, he reached a strong hand towards me and wanted to clutch my arm, which he did with amazing strength and said "I love you.. I love you, you know that don't you?" After that he moaned a bit and showed obvious pain. His body looked like some insignificant bumps under the sheets, he was barely there. I wasn't prepared for how this would effect me and I just stood there stunned, nauseated, and I wanted to run from the room, but I didn't. I stood there looking like I didn't care, my best defense. A cousin of mine, just a few years younger than me, entered the room at that point. Papaw all but leaped from the bed to hug her when she came in. His strength those few hours before he died was intense. The effort left him moaning, and I had to sit down.. peeking at him from underneath the IV bags. He said to mamaw, through the oxygen mask "How much longer do I got, this is bad, its too hard on me." I watched him try to kiss Mamaw through the mask every time she got near enough for him to do so. I couldn't stay much longer, told everyone that I loved them then went to the waiting room.
Stuff happened after that. I sneaked in one of Papaw's sweet good friends so that she could see him after visiting hours and then hugged her while she cried because she saw him. I talked to family, I told stories that weren't relevant to anything, and we all giggled about some stories about cremation. I didn't want to leave Mamaw, but she was behind closed doors and I needed to get back to my children who I had hardly seen all weekend.
Manny isn't sleeping anymore, but I feel kind of stupid complaining about that.. so lets just say that I got about 2 hours of sleep that night between thinking and parenting. I was laying in bed when mom called and left a message that papaw had died about 11 PM, about 8 hours after I left the hospital. I talked to her a bit then slept. I called mamaw and dad a few times over the next few days and tonight we went to visitation.
I opted to bring my children to visitation. I know that death is handled REALLY differently in different regions of the USA. But I have been to a lot of southern open casket visitations and I had an idea about how my children would react. Jake was thrilled to see all of his grandparents in one place. Pops and Granny went with us. He ran up to Mamaw. I wasn't really expecting what came next as he tried to jump on tiptoes to see what was inside the casket. He saw Papaw and his expression changed a bit, then he decided he would go sit with my mom instead. That was all. Manny also saw Papaw's body and waved at him. I had similar experiences as a child, and I think that this is healthy. Others might disagree, but.. well.. we do the best we can.
Is Death worse than Birth in America? Most people know that I am a birth advocate, and believe that birth is natural and that we shouldn't be tortured, frightened and otherwise poked and prodded during birth (dont' get me started). Equally, I believe that death is another part of life that is similar to death in that.. it can be painful, it is scary, you want your loved ones near you (or not), it is private, it deserves respect and, once it is over, the pain goes away and you are left with bliss. These two parts of "life" are so similar. Why is it that, in this society, we remove the loved ones and the comfort and support from this part of life.. just so that nobody feels discomfort, except for the person dying? I was once told that I shouldn't talk about my childrens' issues because it made others uncomfortable. Does that mean that we shouldn't hold the hands of the dying and of the ones giving life because it makes everyone else uncomfortable? Rubbish. It is VERY hard, and I didn't do as good of a job as I wish I could have holding Papaw's hand.. but I tried.. and I will think on it for the rest of my life. Once upon a time women gathered around a woman during her birth and did everything they could to ease her through transition, and once upon a time EVERYONE gathered around a dying man and hugged and kissed and eased him into the great beyond. I think that everyone did the best that they could to do that for Papaw.
Papaw's funeral is tomorrow. Steve will watch the kids while I go. I'm fine, by the way, and we don't need anything. Papaw is at peace and Mamaw's life will begin a new chapter, I think. She is healthy and full of energy and will find a way to help others in a way that will leave the rest of us in awe, I am sure.
(ETA)
Steve has a notion that people start to worry about their "legacy" when they get older and what sort of memories they leave behind. I can understand this, especially since I don't believe in an afterlife, that our rewards ARE here on earth, and that the only thing we leave behind is who we were and the impression we made on people. Papaw has nothing to worry about. His legacy is set in stone. When I was little he played with me, and I don't mean he threw a ball for a few minutes or that he played peekaboo from his chair in front of the TV. He downright PLAYED with me. For hours. On rainy days we would play "redlight, greenlight" in the basement. On sunny days he'd set up a baseball game with cousins or family members, or he would help me practice my shooting until the backyard should have probably been declared a health hazard due to the number of lead pellets. He was a huge part of my childhood, and I'll never forget that. Papaw was a schoolteacher, and touched the lives of hundreds and hundreds of people. His 90th birthday was standing room only, and attended by a couple hundred people. I can't imagine what his funeral will be like. I hope they have a big room.
We arrived home from our adventures on Saturday night, and Steve retrieved the kids from Granny and Pop's early Sunday morning. I called my mom, who had expressed a desire to see the kids on Sunday but got no answer. When I was able to reach her she said that Papaw was doing badly, and was in the SICU at Hamilton Medical center. Just from the information that I had gleaned in the past few days from Mamaw and others, I knew that he must be close to the end. I said I'd come up there, and left Steve with the boys for a short trip to the hospital.
As soon as I got there I was greeted by several family members and told to go on back to his room, as visiting hours were about to end. I steeled myself, conjuring up the image of my maternal grandmother, when I had visited her in the same SICU, shortly before her death, and tried to prepare myself. It didn't work. I asked Mamaw if Papaw could hear me. She said, "Of course!" and leaned close to him and said "Jessica is here." Although he looked like a burn victim due to a bad rash that was being treated, and his eyes looked like tiny little pig-eyes when they opened, he reached a strong hand towards me and wanted to clutch my arm, which he did with amazing strength and said "I love you.. I love you, you know that don't you?" After that he moaned a bit and showed obvious pain. His body looked like some insignificant bumps under the sheets, he was barely there. I wasn't prepared for how this would effect me and I just stood there stunned, nauseated, and I wanted to run from the room, but I didn't. I stood there looking like I didn't care, my best defense. A cousin of mine, just a few years younger than me, entered the room at that point. Papaw all but leaped from the bed to hug her when she came in. His strength those few hours before he died was intense. The effort left him moaning, and I had to sit down.. peeking at him from underneath the IV bags. He said to mamaw, through the oxygen mask "How much longer do I got, this is bad, its too hard on me." I watched him try to kiss Mamaw through the mask every time she got near enough for him to do so. I couldn't stay much longer, told everyone that I loved them then went to the waiting room.
Stuff happened after that. I sneaked in one of Papaw's sweet good friends so that she could see him after visiting hours and then hugged her while she cried because she saw him. I talked to family, I told stories that weren't relevant to anything, and we all giggled about some stories about cremation. I didn't want to leave Mamaw, but she was behind closed doors and I needed to get back to my children who I had hardly seen all weekend.
Manny isn't sleeping anymore, but I feel kind of stupid complaining about that.. so lets just say that I got about 2 hours of sleep that night between thinking and parenting. I was laying in bed when mom called and left a message that papaw had died about 11 PM, about 8 hours after I left the hospital. I talked to her a bit then slept. I called mamaw and dad a few times over the next few days and tonight we went to visitation.
I opted to bring my children to visitation. I know that death is handled REALLY differently in different regions of the USA. But I have been to a lot of southern open casket visitations and I had an idea about how my children would react. Jake was thrilled to see all of his grandparents in one place. Pops and Granny went with us. He ran up to Mamaw. I wasn't really expecting what came next as he tried to jump on tiptoes to see what was inside the casket. He saw Papaw and his expression changed a bit, then he decided he would go sit with my mom instead. That was all. Manny also saw Papaw's body and waved at him. I had similar experiences as a child, and I think that this is healthy. Others might disagree, but.. well.. we do the best we can.
Is Death worse than Birth in America? Most people know that I am a birth advocate, and believe that birth is natural and that we shouldn't be tortured, frightened and otherwise poked and prodded during birth (dont' get me started). Equally, I believe that death is another part of life that is similar to death in that.. it can be painful, it is scary, you want your loved ones near you (or not), it is private, it deserves respect and, once it is over, the pain goes away and you are left with bliss. These two parts of "life" are so similar. Why is it that, in this society, we remove the loved ones and the comfort and support from this part of life.. just so that nobody feels discomfort, except for the person dying? I was once told that I shouldn't talk about my childrens' issues because it made others uncomfortable. Does that mean that we shouldn't hold the hands of the dying and of the ones giving life because it makes everyone else uncomfortable? Rubbish. It is VERY hard, and I didn't do as good of a job as I wish I could have holding Papaw's hand.. but I tried.. and I will think on it for the rest of my life. Once upon a time women gathered around a woman during her birth and did everything they could to ease her through transition, and once upon a time EVERYONE gathered around a dying man and hugged and kissed and eased him into the great beyond. I think that everyone did the best that they could to do that for Papaw.
Papaw's funeral is tomorrow. Steve will watch the kids while I go. I'm fine, by the way, and we don't need anything. Papaw is at peace and Mamaw's life will begin a new chapter, I think. She is healthy and full of energy and will find a way to help others in a way that will leave the rest of us in awe, I am sure.
(ETA)
Steve has a notion that people start to worry about their "legacy" when they get older and what sort of memories they leave behind. I can understand this, especially since I don't believe in an afterlife, that our rewards ARE here on earth, and that the only thing we leave behind is who we were and the impression we made on people. Papaw has nothing to worry about. His legacy is set in stone. When I was little he played with me, and I don't mean he threw a ball for a few minutes or that he played peekaboo from his chair in front of the TV. He downright PLAYED with me. For hours. On rainy days we would play "redlight, greenlight" in the basement. On sunny days he'd set up a baseball game with cousins or family members, or he would help me practice my shooting until the backyard should have probably been declared a health hazard due to the number of lead pellets. He was a huge part of my childhood, and I'll never forget that. Papaw was a schoolteacher, and touched the lives of hundreds and hundreds of people. His 90th birthday was standing room only, and attended by a couple hundred people. I can't imagine what his funeral will be like. I hope they have a big room.
Wednesday, October 14, 2009
Hematologist/Oncologist appointment
Today Manny and I visited Aflac Cancer Center and Blood Disorders Service of Children’s Healthcare of Atlanta
and saw Dr. Dolly Aguilera. I'll try my best to reiterate what she said. Manny screamed most of the way to Atlanta, and whined, yelled, cried and tried to escape the room throughout most of the visit. I would have very much have liked to ask more questions, but as it stood, I had to make the best use of time by asking the poor woman to repeat herself several times so that I could hear what she was saying.
Dr. A asked a lot of questions, the usual ones. She went over the significance of the spots on Manny's brain as well as the tumor on his spine. The spots on his brain, aside from the largest one, she referred to as "bright spots" and said that these types of spots will often be brighter or even fade in subsequent MRIs. She is most concerned with the tumor on his thalamus, the part of the brain that controls a person's personality as well as being a gateway for other parts of the brain to communicate with the rest of the body. Should this tumor begin to grow then treatment would be necessary. Should this happen, Dr. Reisner, the neurosurgeon, would be consulted to see if the tumor could be excised, or surgically removed. If not, then other treatments would be explored.
Children with NF1 have a higher risk of cancer and leukemia. Tumors over the size of 5 cm have an even greater chance of becoming cancerous. Manny's spinal tumor is 1.8 centimeters. If a child with NF1 gets cancer, then treatment options are limited because they can not be exposed to radiation, and are especially sensitive to many chemotherapy drugs. Ironic, eh?
Dr. A wants Manny to have MRI's every THREE OR FOUR MONTHS. What?! That did come as a blow to me. Dr. Reisner had previously mentioned getting an MRI in nine months, then yearly. Thats a lot of sedation, contrast dye and stress to pump into one little guy. Dr. A has recently joined the Aflac Cancer Center's team and came from a group in Chicago that has one of the premier NF1 clinics in the nation. She seems to have a TON of knowledge about NF1 and her interest and knowledge of the disease definitely goes beyond the blood, tumor and cancer boundaries. I am glad to have her as one of Manny's doctors, but this type of thoroughness is well.. a lot to take in.
Dr. A wants to keep an eye on the tumor on Manny's spine (the largest) for fast growth or changes that might mean cancer. Luckily, this tumor is not putting pressure on the spine or any of the soft tissue surrounding it. If it does begin to cause pain or pressure, it too would have to be removed or treated.
Dr. A also told me that getting Manny's eye exams every 6 months is extremely important. Tumors of the optical nerve, liche nodules and other things that could threaten Manny's ability to see may sometimes be quicker diagnosed by an ophthalmologist than by an MRI, or vice versa, thus saving a patent's sight.
We discussed my concerns with Manny's hearing. Although I KNOW that he can hear some things, and even responds to commands when his back is turned to me, he seems to not hear everything. His limited speech sounds much like a deaf person.. nasally. His word for "milk" being a very throaty "nnnguh", etc. Granny told me today that she and Pops were "testing" his hearing by making loud noises behind him, and, being the parents of a child born profoundly deaf, she is concerned about his hearing as well. Although the function of Manny's eardrums has been tested and no abnormalities found, Dr. A's response to what I told her was, "Yes, that is extremely concerning." Luckily, during Manny's next MRI, they will be able to do a very in-depth test of his hearing that will actually test how his brain is receiving signals. This is great news to me, to be able to know if he is hearing well, or if his lack of response is more of a social delay, like Jake exhibited near the same age.
Dr. A also wants to do a blood panel to check Manny's organ functions and for other abnormalities. This will also be done during the next MRI, which will be scheduled for next month. The risks involved in so many MRIs are, of course the risk of sedation, and the risk of kidney damage due to the contrast dye. We will be doing the next MRI next month, but I would very much like to discuss the frequency of these treatments during the next visit. Three or four MRIs per year is just a lot.
This is the part where I usually sum up how I feel about this particular visit. It was definitely more than I expected. The doctor made it clear that there is a spectrum of outcomes with this disease, but I was kind of made to feel like at least some of these things will become a reality in the near future. I guess I've sort of let myself believe, so far, that Manny's case will be less severe, and that maybe if we ignore these tumors.. they'll go away, and one day we'll laugh about that time they told us Manny has a "brain tumor" as he beats all odds and begins to develop normally. I really have trouble with this "wait and see" attitude that I'm supposed to have. It makes me crazy. I know that the cost of this care will put a greater strain on our family, but what are we supposed to do?
As I was leaving, a man, probably in his late 40's came to use the elevator at the same time as me. He had a badge and was some sort of employee of the hospital. We entered the elevator together. The first thing I noticed were his forearms, which were covered in small tumors that looked exactly like tiny beads, peas, and even regular sized marbles had been pushed just underneath the skin. Maybe 50 of these were visible on each forearm and his hands. Probably 30 or 40 more visible on his face and neck. He was otherwise a normal looking man. His speech was short and curt as I asked him what floor he would go to, and he looked at the ground. I tried not to stare but, of course, my eyes searched for cafe-au-lait spots. He had several on his neck and the top of his head. This man had NF1. It just so happened that he was parked near me so I followed him down the sidewalk and stairwell. He was shorter than me, maybe 5'3" and showed some difficulty walking down the stairs.. just a slight limp. Otherwise he went about finding his keys in his pocket, his parking ticket and going to his car like anyone else. The scene made an impression on me, thought I'm not sure I can describe it yet.
I've been grumpy and tired the rest of the day. I really just wanted to write down the facts of the day... I will remember more, I'm sure.
I viewed this video the evening that Dr. Michaels first pointed out Manny's cafe-au-lait spots and familiarized me with the term Neurofibromatosis. It horrified me, and now it inspires me.
and saw Dr. Dolly Aguilera. I'll try my best to reiterate what she said. Manny screamed most of the way to Atlanta, and whined, yelled, cried and tried to escape the room throughout most of the visit. I would have very much have liked to ask more questions, but as it stood, I had to make the best use of time by asking the poor woman to repeat herself several times so that I could hear what she was saying.
Dr. A asked a lot of questions, the usual ones. She went over the significance of the spots on Manny's brain as well as the tumor on his spine. The spots on his brain, aside from the largest one, she referred to as "bright spots" and said that these types of spots will often be brighter or even fade in subsequent MRIs. She is most concerned with the tumor on his thalamus, the part of the brain that controls a person's personality as well as being a gateway for other parts of the brain to communicate with the rest of the body. Should this tumor begin to grow then treatment would be necessary. Should this happen, Dr. Reisner, the neurosurgeon, would be consulted to see if the tumor could be excised, or surgically removed. If not, then other treatments would be explored.
Children with NF1 have a higher risk of cancer and leukemia. Tumors over the size of 5 cm have an even greater chance of becoming cancerous. Manny's spinal tumor is 1.8 centimeters. If a child with NF1 gets cancer, then treatment options are limited because they can not be exposed to radiation, and are especially sensitive to many chemotherapy drugs. Ironic, eh?
Dr. A wants Manny to have MRI's every THREE OR FOUR MONTHS. What?! That did come as a blow to me. Dr. Reisner had previously mentioned getting an MRI in nine months, then yearly. Thats a lot of sedation, contrast dye and stress to pump into one little guy. Dr. A has recently joined the Aflac Cancer Center's team and came from a group in Chicago that has one of the premier NF1 clinics in the nation. She seems to have a TON of knowledge about NF1 and her interest and knowledge of the disease definitely goes beyond the blood, tumor and cancer boundaries. I am glad to have her as one of Manny's doctors, but this type of thoroughness is well.. a lot to take in.
Dr. A wants to keep an eye on the tumor on Manny's spine (the largest) for fast growth or changes that might mean cancer. Luckily, this tumor is not putting pressure on the spine or any of the soft tissue surrounding it. If it does begin to cause pain or pressure, it too would have to be removed or treated.
Dr. A also told me that getting Manny's eye exams every 6 months is extremely important. Tumors of the optical nerve, liche nodules and other things that could threaten Manny's ability to see may sometimes be quicker diagnosed by an ophthalmologist than by an MRI, or vice versa, thus saving a patent's sight.
We discussed my concerns with Manny's hearing. Although I KNOW that he can hear some things, and even responds to commands when his back is turned to me, he seems to not hear everything. His limited speech sounds much like a deaf person.. nasally. His word for "milk" being a very throaty "nnnguh", etc. Granny told me today that she and Pops were "testing" his hearing by making loud noises behind him, and, being the parents of a child born profoundly deaf, she is concerned about his hearing as well. Although the function of Manny's eardrums has been tested and no abnormalities found, Dr. A's response to what I told her was, "Yes, that is extremely concerning." Luckily, during Manny's next MRI, they will be able to do a very in-depth test of his hearing that will actually test how his brain is receiving signals. This is great news to me, to be able to know if he is hearing well, or if his lack of response is more of a social delay, like Jake exhibited near the same age.
Dr. A also wants to do a blood panel to check Manny's organ functions and for other abnormalities. This will also be done during the next MRI, which will be scheduled for next month. The risks involved in so many MRIs are, of course the risk of sedation, and the risk of kidney damage due to the contrast dye. We will be doing the next MRI next month, but I would very much like to discuss the frequency of these treatments during the next visit. Three or four MRIs per year is just a lot.
This is the part where I usually sum up how I feel about this particular visit. It was definitely more than I expected. The doctor made it clear that there is a spectrum of outcomes with this disease, but I was kind of made to feel like at least some of these things will become a reality in the near future. I guess I've sort of let myself believe, so far, that Manny's case will be less severe, and that maybe if we ignore these tumors.. they'll go away, and one day we'll laugh about that time they told us Manny has a "brain tumor" as he beats all odds and begins to develop normally. I really have trouble with this "wait and see" attitude that I'm supposed to have. It makes me crazy. I know that the cost of this care will put a greater strain on our family, but what are we supposed to do?
As I was leaving, a man, probably in his late 40's came to use the elevator at the same time as me. He had a badge and was some sort of employee of the hospital. We entered the elevator together. The first thing I noticed were his forearms, which were covered in small tumors that looked exactly like tiny beads, peas, and even regular sized marbles had been pushed just underneath the skin. Maybe 50 of these were visible on each forearm and his hands. Probably 30 or 40 more visible on his face and neck. He was otherwise a normal looking man. His speech was short and curt as I asked him what floor he would go to, and he looked at the ground. I tried not to stare but, of course, my eyes searched for cafe-au-lait spots. He had several on his neck and the top of his head. This man had NF1. It just so happened that he was parked near me so I followed him down the sidewalk and stairwell. He was shorter than me, maybe 5'3" and showed some difficulty walking down the stairs.. just a slight limp. Otherwise he went about finding his keys in his pocket, his parking ticket and going to his car like anyone else. The scene made an impression on me, thought I'm not sure I can describe it yet.
I've been grumpy and tired the rest of the day. I really just wanted to write down the facts of the day... I will remember more, I'm sure.
I viewed this video the evening that Dr. Michaels first pointed out Manny's cafe-au-lait spots and familiarized me with the term Neurofibromatosis. It horrified me, and now it inspires me.
Friday, October 9, 2009
Too tired to post this
Again I've let a month slide by without an update. Manny has his arena assessment with Babies can't Wait. He has been assigned an Occupational Therapist who will (eventually) come to the house to do an assessment. We also set up a bunch of other appointments and hammered out some more details. Luckily, during the two hour meeting, Manny cried inconsoleably and begged to be let out the door. The assessment was done by interview only, not by observation. Really the whole thing was a non-event, more of an organizational meeting than anything else, because Manny already qualifies because he's been diagnosed with global developmental delay by two physicians.
I'm tired because Manny has not been sleeping. About 4 or 5 nights out of the week he will sleep for only about 2 or 3 hours (goes to bed fine and easily and on schedule, then wakes about 1 AM) and stays awake until almost time for everyone to get up, around 5 AM or so. He will do this for many nights in a row, then sleep "most" of the night for a day or two. It is exhausting and I don't even want to go into the thoughts that I have some of these nights. I have read a little about sleep disorders in children with NF1, and it seems to be a common problem. I really don't even want to talk about it any more than that.
On a lighter note, Manny has had an appearance change. I cut his hair. And no, its not because of the rude an uncomfortable comments that I have been getting, mostly questions like "Do you secretly want a girl?" (yes, I didn't cut my baby's hair because I am disatisfied with his gender. Shhh.. don't tell, I dress him up in girl's clothes when we're home alone.) or "Is it for religious reasons?" (um......), or "Well, there's gotta be a REASON. What is it?" (I dunno, its a novelty? Its gorgeous? I'm kind of a hippie chick? why not?...) but I digress. I shouldn't be surprised at the fact that people think they should speak every time a thought enters their head. So anyhow.. due to the fact that it was just becoming a huge pain in the ass, I cut my lil dude's hair. He's even more beautiful than before.
Jake went through a bad spell with school, to the point that we had to go pick him up because he was freaking out the teachers with his gagging and hyperventilating. I discovered that he really needs a longer transition time in the morning, so we get him up and we go play on the front porch for a while to get his blood pumping. This quickly solved the problem. Whew..... his father and I both felt like we'd been punched in the stomach when we got the call, fearing a repeat of his first school experience.
School is still doing wonders for Jake. He constantly is more "conversational" if you can call it that. He SINGS all the time, songs from school and television. He is a genius at remembering the words to songs, much to my delight. This morning I was working and heard an odd noise from the kitchen. I yelled for Jake and heard him say "I stuck. Ayuda me (help me, in spanish)." and I went to see what was going on. I shot this video of him singing the "Wonder Pets" theme modified to fit his situation.
I'm still going crazy with Bratsacks. Even with two people helping me part-time I still sew almost full-time. I got word from Parents.com that I will definitely be featured at the end of the month. Thats HUGE! Luckily I have wonderful support. Between Steve and his parents I'm really able to take advantage of this opportunity. I guess the most heart-warming thing about Granny and Pops has to be the budding relationship between Manny and Pops. Pops even beats Granny to the car sometimes to come pick him up. Pops is the one who Manny runs to when he's upset, and I swear the bugger totally ignores me if his grandad is in the room. Its pretty amazing to watch. We have even more doctor's appointments with Manny in the next few weeks (hematologist/oncolagist) and Granny will be able to get Jake off the bus those days so Steve doesn't have to take off work. She'll also be taking Manny part of the time during a music festival next weekend (he is at a phase where he's next to impossible in public... I remember this stage with Jake...whew), and will get Jake after-school while Steve works and I fly to Austin for a friend's wedding. I try to make it very very clear that we dont' want to take advantage of their help, but they actually seem to love it, and never miss an opportunity to spend time with them. Jake is on fall break until Wednesday, and I thought about planning an outing for everyone on Tuesday, but that was a laugh. Granny is too excited to have both of them on her "regular day."... I guess I'll just have to go on our field trip on Monday. What a blessing.
I guess I saved the best for last. Today I went out to the garage and Manny followed. He went to the van, banged on it and said "cahhhhh!" Huh? really? I actually didn't get my hopes up, simply because, though he tends to say words sometimes, its not consistent. He spent the rest of the day bringing me toy cars and saying "CAHH!" SO proud of himself. I hope this is the beginning of real progress.
Now I must sleep. I'm sure I left a lot out, but thats the best I can do tonight.
I'm tired because Manny has not been sleeping. About 4 or 5 nights out of the week he will sleep for only about 2 or 3 hours (goes to bed fine and easily and on schedule, then wakes about 1 AM) and stays awake until almost time for everyone to get up, around 5 AM or so. He will do this for many nights in a row, then sleep "most" of the night for a day or two. It is exhausting and I don't even want to go into the thoughts that I have some of these nights. I have read a little about sleep disorders in children with NF1, and it seems to be a common problem. I really don't even want to talk about it any more than that.
On a lighter note, Manny has had an appearance change. I cut his hair. And no, its not because of the rude an uncomfortable comments that I have been getting, mostly questions like "Do you secretly want a girl?" (yes, I didn't cut my baby's hair because I am disatisfied with his gender. Shhh.. don't tell, I dress him up in girl's clothes when we're home alone.) or "Is it for religious reasons?" (um......), or "Well, there's gotta be a REASON. What is it?" (I dunno, its a novelty? Its gorgeous? I'm kind of a hippie chick? why not?...) but I digress. I shouldn't be surprised at the fact that people think they should speak every time a thought enters their head. So anyhow.. due to the fact that it was just becoming a huge pain in the ass, I cut my lil dude's hair. He's even more beautiful than before.
Jake went through a bad spell with school, to the point that we had to go pick him up because he was freaking out the teachers with his gagging and hyperventilating. I discovered that he really needs a longer transition time in the morning, so we get him up and we go play on the front porch for a while to get his blood pumping. This quickly solved the problem. Whew..... his father and I both felt like we'd been punched in the stomach when we got the call, fearing a repeat of his first school experience.
School is still doing wonders for Jake. He constantly is more "conversational" if you can call it that. He SINGS all the time, songs from school and television. He is a genius at remembering the words to songs, much to my delight. This morning I was working and heard an odd noise from the kitchen. I yelled for Jake and heard him say "I stuck. Ayuda me (help me, in spanish)." and I went to see what was going on. I shot this video of him singing the "Wonder Pets" theme modified to fit his situation.
I'm still going crazy with Bratsacks. Even with two people helping me part-time I still sew almost full-time. I got word from Parents.com that I will definitely be featured at the end of the month. Thats HUGE! Luckily I have wonderful support. Between Steve and his parents I'm really able to take advantage of this opportunity. I guess the most heart-warming thing about Granny and Pops has to be the budding relationship between Manny and Pops. Pops even beats Granny to the car sometimes to come pick him up. Pops is the one who Manny runs to when he's upset, and I swear the bugger totally ignores me if his grandad is in the room. Its pretty amazing to watch. We have even more doctor's appointments with Manny in the next few weeks (hematologist/oncolagist) and Granny will be able to get Jake off the bus those days so Steve doesn't have to take off work. She'll also be taking Manny part of the time during a music festival next weekend (he is at a phase where he's next to impossible in public... I remember this stage with Jake...whew), and will get Jake after-school while Steve works and I fly to Austin for a friend's wedding. I try to make it very very clear that we dont' want to take advantage of their help, but they actually seem to love it, and never miss an opportunity to spend time with them. Jake is on fall break until Wednesday, and I thought about planning an outing for everyone on Tuesday, but that was a laugh. Granny is too excited to have both of them on her "regular day."... I guess I'll just have to go on our field trip on Monday. What a blessing.
I guess I saved the best for last. Today I went out to the garage and Manny followed. He went to the van, banged on it and said "cahhhhh!" Huh? really? I actually didn't get my hopes up, simply because, though he tends to say words sometimes, its not consistent. He spent the rest of the day bringing me toy cars and saying "CAHH!" SO proud of himself. I hope this is the beginning of real progress.
Now I must sleep. I'm sure I left a lot out, but thats the best I can do tonight.
Thursday, September 17, 2009
Fun and Work, an update on everyone
The weekend visit with the Carithers family was such a wonderful reprieve. As usualy, we did a whole lot of nothing, our kids were happy just to have each other around, we were happy to have other adults around to talk to, and I was especially happy to have that knot in my stomach that tells me that if I'm having idle time, I should be downstairs sewing. We ate, drank and were merry. We went to the indian mounds in Macon and had a nice hike. I'm really really grateful to have found a close lady friend like Ariane. She's strong, upbeat and positive, and always has something good to say. Thanks for being my friend. Thank you for inviting us down and Happy Birthday Kevin. I hope you had a great one. It was the best celebration that Manny and I could have for our Birthdays as well.
After spending Sunday night recovering from what may have been a slight bug, I worked around the house a bit and sewed while Manny napped. Micaela, the special education teacher, called around noon and reminded me of an IP meeting at the school that I had completely forgotten about. The meeting was in just about an hour and a half, and I was frantic as I had not secured childcare for Manny for that day. I thought of calling Steve's mom, but she was already watching him on scheduled days this week. I called Mamaw's house and got Dad. He INSISTED that I bring Manny over, even though he was sitting with Papaw, who is slipping into a world of confusion as his life on this planet draws to a close, while Mamaw ran errands. I was grateful, and according to Dad, it went well! Thanks for saving my life Dad.
The IP meeting went well. It is a reassessment of Jake's need for special needs services, etc. His delays in speech and consistency in answering questions was discussed. Basically, he is still not "testable" since he will not answer questions on a regular basis. His social skills are lacking, of course. I was so very very proud when they completely skipped the section on behavioral problems, simply stating that Jake doesn't have any. We discussed his placement for next year, and I think what will probably happen will be that he will re-attend the exact same program next year. I see no reason to send him to kindergarten at all, he simply doesn't possess the learning skills, and the teachers agree. We're going to take it slow. Its quite possible that he won't enter 1st grade until he is 7 or 8, and that is just fine with me. The teachers there say that they love him and that he is a joy, and they seem sincere.
Manny had an appointment with Dr. Michaels today. He weighs 26 lbs! He's such a little guy, as Jake was around 26 lbs at one year old. He's fattening up and having a growth spurt. The appointment with Dr. M was simply a follow up and really a non-event and more of an organizational meeting. Since he has all of the medical reports from various doctors right there, he can tell me the next steps and instruct his staff to make the appointments for me. Its really a blessing, as my mind gets cluttered sometimes. He gave his obligatory speech on vaccinations, I declined, and he was supportive of my decisions. He was very complimentary and told me I was doing "a good job." Gosh, I hope so... I just do the best that I can.
Both of my businesses have seen an upswing in activity. I am often frustrated when I have no time to sew because my grooming business has had an unexpected boom in business. I can't actually COMPLAIN though, because money is money, right? I have a wonderful lady helping me with my sewing, and my friend Sam is showing up and learning to do odd jobs with Bratsacks, including some sewing. Today I got an email from the press contact at etsy. He was informing me that one of my items could be featured at Parents.com (of Parents Magazine). If that happens, it will be HUGE. One of the largest parenting magazines in America? I am extremely excited, but trying not to get my hopes up.
I have a very understanding husband to put up with me during all of this. I am pretty much a frazzled, exhausted mess. My patience wears thin and, once he gets off from his own 40 hour (plus 8 hours of driving) job, he is given the job of watching the kids and getting them ready for bed while I either sew or work on shipping and receiving. I really really don't want to be one of "those" moms who is absent because they are obsessed with their job, but I also want to be successful and have a part in providing for my family. I honestly don't think that there's anything this man wouldn't do for his kids. I like to think that Steve and I have a good balance most of the time, and I hope he feels the same way.
The boys in my family continue to amaze and frustrate me and constantly make me crazy. I would like to say that my kids make me laugh a lot, but really, they don't. However, when they do, its good laughter. Jake had me cracking up tonight at the mexican restaurant when I told him to get the spoon off of his head. He put it on his nose, and I said "get it off of your nose" (I was starting to get frustrated) and he grinned and put it on his ear. I was totally sucked in... "get it off of your ear." "get it off of your foot" "get it off of your bellybutton." Maybe not a great lesson in table manners, but sometimes its more important to catch those moments of humor, communication and social participation.
(In the photo above, Jake wears a pair of 18 months pajama pants and an 18 months onesie jumper unsnapped, both inside out, and one fluffy shoe. He is signing "walk" and informing me that he is ready to go walk down the street)
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