Yesterday had a terrific time at a bowling birthday party for Sophia's friend M. It was good to get out and see friends I haven't seen in awhile (one girlfriend is 4 months pregnant and I had no idea!) . I realized my personality is likely so abrasive and loud and crazy that I most likely make these people glad that they only see me once every 4 months for a birthday party. I think the kids liked all the high-fives I was making them give me. After figuring out that I was going to make them give me a high-five EVERY shot, they just started coming over to me and giving me one, even after getting only 2 pins down. See ABA therapy works on regular kids too. :)
Zach had a bit of a hard tiem with the new environment at the bowling alley. I made special cupcakes for him - but they were strawberry and kinda gross. When he saw the real cupcakes come out - he went nuts. I felt so bad that I didn't make him better cupcakes. I thought I had my bases covered by just having the ones I made and bringing GFCF sprinkles. He saw those chocoalte puppies and Steve had to leave the building with him. I suck. Now I know to make a better effort next time - he likely would have sat around with the kids and started to mix more if he didn't feel excluded from the cupcake ritual. Like I said, I suck. Won't let it happen again.
We have a weekend with no therapists, no social commitments, no major craziness? YES!
Well, no. I forgot about the car thing.
One good thing about the car thing: all the police stuff should now be over with pending no additional info. coming through. All the paperwork has been filed. Our stolen car incidence has caused a string reaction of things, most notably, my neighbor now keeping their garage door closed, a neighborhood watch group forming, and the lead story on Channel 3 NBC 11:00 news a few nights ago with the officer who has been working with us in our neighborhood. Yeah.
Now the bad thing about the car thing: we have to get a new one. Today should be the day. Wonder how the car dealership is going to do with two crazy children running around the showroom. Maybe they'll give us a better deal just to get us out of there. That's what I am banking on. Gonna wear the autism awareness T-shirt for some inspiration and maybe even a little pity.
OK - so maybe things are not going to be as calm as I would like. But no sick kids and time to just hang with the family will be great.
Saturday, May 30, 2009
Thursday, May 28, 2009
Sleep why dost thou come at dinner?
Down for the count. He falls asleep at the oddest times. That would be a chicken nugget in his mouth.
Wednesday, May 27, 2009
A race against time; it's all about the numbers.
Sophia is sick now. I am not a big fan of vomit, although I can say that we are getting pretty proficient of cleaning it up in our household. Can I write that on my resume? Cuz I am so close to getting fired now, I'll need all the skill sets I can muster.
Zach has been tantruming since the last bout of illness. I don't know how to explain how much worse it is when he gets sick than Sophia. It's not just the illness, but the aftermath too. He gets out of the routine of his therapy and gets angry when we start the routine again and thus tantrums. Now today, having realized I am home, he gave one of the therapists such a hard time, my nerves were shot by the end of the session. It wasn't just the crying, it was the screaming, and hearing thumping indicating he was throwing things, in this case himself, against the ground. Think about this going on for an hour and half folks. Unfortunately, because Sophia was sick on the couch, I couldn't just leave the house and go for a walk. Instead, I heard it all and my nerves were pretty frazzled. The goofiness is that this happened during his second session, and oddly enough, he was fairly compliant during his first session. I sat in on a portion of the first session, which I think may have helped.
Zach has begun to attempt to count. It is pretty funny. He actually goes up to 20! Mind you, it isn't exactly consecutive, but it is sequential. It usually goes something like this:
We are in the process of trying to find a new vehicle at this point. The Avalon has served us well, with 13 years under her belt, and 183,00 miles. Unfortunately, it has a $1600 bill associated with it to get it past inspection, and will likely need some more work after that. So we are rushing to find a car. I hate having to do something like this when we have more important things to spend our time on.
Insurance reform is so important to us - I cannot even emphasize this enough. Steve would like to get a face to face with our local state representatives. I think this is a great idea. I think this is absolutely necessary, our families future, and so many others, are dependent on it. If anyone out there has any ideas on how to get that through to our state representatives, would love to hear them.
I am looking for therapists to work with Zach on days when the other therapists need to take off, in the afternoons, evenings, and on weekends. They will need to be trained, most likely. Ka-ching. I absolutely cannot lose my job right now. This will be too much money. But it is so important that he get all that he can right now. We have gone from a nonverbal, nonsocial kid - to an engaging kid who is playing with cards and starting to count. This is some major progress - and it will only go faster and faster as times goes on up to a point.
The magic age of 3. Zach is rapidly approaching this number. Such a critical time in brain development. The influence of early environment on brain development is long lasting. The environment affects not only the number of brain cells and the number of connections among them, but also the way these connections are "wired". Zach needs the additional stimulus in his environment to form the appropriate connections or "wiring". According to research reported in Early Learning Left Out: An Examination of Public Investments in Education and Development by Child Age (February 2004), 85 percent of a child’s core brain structure is formed by age 3.
Does anyone out there get that we have to do everything we can now? If this was cancer, I feel like everyone would be hopping. This could be the difference between a functional and non-functional individual - a lifelong disability that no radiation, or chemotherapy can rid. It might not be life or death (although indirectly it may be) but it is totally life affecting. Do people understand that there are others out there that go to college and get jobs, and those who are institutionalized because of dangerous behavior or total inability to care for themselves? This is huge people. Please try and understand that this is such a race against time as critical as a child with any life altering disease. He may look fine, but the course of this child's life is destined by the intervention he is receiving right now. I feel like there are so many out there that don't take this seriously because they really haven't thought it through and are responding based on their emotional response to a cute smiley kid - what's not to smile about right? Get over your instincts - autism is an invisible disease and it is very serious.
Zach has been tantruming since the last bout of illness. I don't know how to explain how much worse it is when he gets sick than Sophia. It's not just the illness, but the aftermath too. He gets out of the routine of his therapy and gets angry when we start the routine again and thus tantrums. Now today, having realized I am home, he gave one of the therapists such a hard time, my nerves were shot by the end of the session. It wasn't just the crying, it was the screaming, and hearing thumping indicating he was throwing things, in this case himself, against the ground. Think about this going on for an hour and half folks. Unfortunately, because Sophia was sick on the couch, I couldn't just leave the house and go for a walk. Instead, I heard it all and my nerves were pretty frazzled. The goofiness is that this happened during his second session, and oddly enough, he was fairly compliant during his first session. I sat in on a portion of the first session, which I think may have helped.
Zach has begun to attempt to count. It is pretty funny. He actually goes up to 20! Mind you, it isn't exactly consecutive, but it is sequential. It usually goes something like this:
Me: zero, (all mathematicians recognize the importance of starting with zero), oneLet's see if we can get him counting on his own up to 10 and then twenty with written number recognition by the end of the summer. That would be so cool... Yeah Steve and I were those kids who liked math - we're engineers! Duh!
Zach: two...
Me: three...
Zach: fow
Me: five...
Zach: sees...
Me: seven... eight...
Zach: nigh...
Me: ten...
Zach: thiwtee..
Me: no Zach, ten, eleven...
Zach: thiwtee...
Me: no Zach, eleven, twelve
Zach: thiwtee...
Me: fourteen...
Zach: twety..
Me: No, fourteen, fifteen
Zach: twety...
Me: No, fifteen, sixteen
Zach: twety...
Me: *sigh* sixteen, seventeen, eighteen, nineteen
Zach: twety
Me: YEAH!
We are in the process of trying to find a new vehicle at this point. The Avalon has served us well, with 13 years under her belt, and 183,00 miles. Unfortunately, it has a $1600 bill associated with it to get it past inspection, and will likely need some more work after that. So we are rushing to find a car. I hate having to do something like this when we have more important things to spend our time on.
Insurance reform is so important to us - I cannot even emphasize this enough. Steve would like to get a face to face with our local state representatives. I think this is a great idea. I think this is absolutely necessary, our families future, and so many others, are dependent on it. If anyone out there has any ideas on how to get that through to our state representatives, would love to hear them.
I am looking for therapists to work with Zach on days when the other therapists need to take off, in the afternoons, evenings, and on weekends. They will need to be trained, most likely. Ka-ching. I absolutely cannot lose my job right now. This will be too much money. But it is so important that he get all that he can right now. We have gone from a nonverbal, nonsocial kid - to an engaging kid who is playing with cards and starting to count. This is some major progress - and it will only go faster and faster as times goes on up to a point.
The magic age of 3. Zach is rapidly approaching this number. Such a critical time in brain development. The influence of early environment on brain development is long lasting. The environment affects not only the number of brain cells and the number of connections among them, but also the way these connections are "wired". Zach needs the additional stimulus in his environment to form the appropriate connections or "wiring". According to research reported in Early Learning Left Out: An Examination of Public Investments in Education and Development by Child Age (February 2004), 85 percent of a child’s core brain structure is formed by age 3.
Does anyone out there get that we have to do everything we can now? If this was cancer, I feel like everyone would be hopping. This could be the difference between a functional and non-functional individual - a lifelong disability that no radiation, or chemotherapy can rid. It might not be life or death (although indirectly it may be) but it is totally life affecting. Do people understand that there are others out there that go to college and get jobs, and those who are institutionalized because of dangerous behavior or total inability to care for themselves? This is huge people. Please try and understand that this is such a race against time as critical as a child with any life altering disease. He may look fine, but the course of this child's life is destined by the intervention he is receiving right now. I feel like there are so many out there that don't take this seriously because they really haven't thought it through and are responding based on their emotional response to a cute smiley kid - what's not to smile about right? Get over your instincts - autism is an invisible disease and it is very serious.
Friday, May 22, 2009
uhhhhgggggggg a very early morning
Zach is sick. Puking and a fever. This puts terror into my heart because I always feel that he will regress during these periods. Now is as good a time as any other to discuss Zach and being sick.
The facts - when Zach gets sick and so does Sophia - he becomes much more ill - holding onto symptoms longer, being more lethargic, higher temperature; exaggerated versions of whatever Sophia has in many capacities. Zach has been ill much more often than Sophia ever was, and gets sick with things before Sophia and sometimes gets things and Sophia never does. If I had to wager a guess, I would think that Zach's immunity may not be as robust as Sophia's and I am wondering if it is lower than most people. Certainly, the fact that his autism symptoms are more prevalent during these periods indicates to me they are aggravated by his immune system. Dare I say they may even by caused by some immunological response?
Even if you don't buy the biomedical causation of autism, anyone who works with kids on the spectrum, and likely any child with special needs, will tell you illness of a child is tough, a child with special needs just that extra amount more stressful. Illness can bring about really terrible behaviors and trigger worsening of symptoms. More often than not these kids can't tell you what is wrong or where it hurts, you just have to guess. Routine virus or ear infection or appendicitis? Roulette anyone?
Just treating Zach's fever isn't routine. There is some research out there that states that acetaminophen (Tylenol) impacts glutathione levels, especially in kids with autism. Some even question whether the introduction of Tylenol and demise of aspirin due to its association with Rye Syndrome have some link to the increase in autism cases.
Science Lesson of the Week:
Glutathione is one of a group of peptides (links between amino acids) called a tripeptide because it contains 3 amino acid bonds. It is an antioxidant, protecting cells from toxins such as free radicals. Low levels of this peptide are associated with poor immune responses. (and other issues too)
I interpret this to mean that if you give Tylenol to a sick child, particularly one with autism, this may slow down the bodies ability to heal itself. I have had several conversations with mothers who have said they preferred ibuprofen over Tylenol, that it works faster, better at reducing high fevers, and lasts longer. I find these anecdotes interesting after reading some of the research.
Anyhow, it's 5 in the morning and I have been up straight for more than 24 hours. I have been up most of this night, most of it from fear that he is dehydrating. I cannot explain to him the reason drinking is important. I am sure his stomach feels like hell after watching him puke so much, so he likely doesn't want to stick anything in it. So I have been slowly here and there, using an eye dropper, dropping water into his mouth in his sleep.
This likely is making me feel better than him.
Reason is sometimes lost to emotion when you are exhausted.
The facts - when Zach gets sick and so does Sophia - he becomes much more ill - holding onto symptoms longer, being more lethargic, higher temperature; exaggerated versions of whatever Sophia has in many capacities. Zach has been ill much more often than Sophia ever was, and gets sick with things before Sophia and sometimes gets things and Sophia never does. If I had to wager a guess, I would think that Zach's immunity may not be as robust as Sophia's and I am wondering if it is lower than most people. Certainly, the fact that his autism symptoms are more prevalent during these periods indicates to me they are aggravated by his immune system. Dare I say they may even by caused by some immunological response?
Even if you don't buy the biomedical causation of autism, anyone who works with kids on the spectrum, and likely any child with special needs, will tell you illness of a child is tough, a child with special needs just that extra amount more stressful. Illness can bring about really terrible behaviors and trigger worsening of symptoms. More often than not these kids can't tell you what is wrong or where it hurts, you just have to guess. Routine virus or ear infection or appendicitis? Roulette anyone?
Just treating Zach's fever isn't routine. There is some research out there that states that acetaminophen (Tylenol) impacts glutathione levels, especially in kids with autism. Some even question whether the introduction of Tylenol and demise of aspirin due to its association with Rye Syndrome have some link to the increase in autism cases.
Science Lesson of the Week:
Glutathione is one of a group of peptides (links between amino acids) called a tripeptide because it contains 3 amino acid bonds. It is an antioxidant, protecting cells from toxins such as free radicals. Low levels of this peptide are associated with poor immune responses. (and other issues too)
I interpret this to mean that if you give Tylenol to a sick child, particularly one with autism, this may slow down the bodies ability to heal itself. I have had several conversations with mothers who have said they preferred ibuprofen over Tylenol, that it works faster, better at reducing high fevers, and lasts longer. I find these anecdotes interesting after reading some of the research.
Anyhow, it's 5 in the morning and I have been up straight for more than 24 hours. I have been up most of this night, most of it from fear that he is dehydrating. I cannot explain to him the reason drinking is important. I am sure his stomach feels like hell after watching him puke so much, so he likely doesn't want to stick anything in it. So I have been slowly here and there, using an eye dropper, dropping water into his mouth in his sleep.
This likely is making me feel better than him.
Reason is sometimes lost to emotion when you are exhausted.
Thursday, May 21, 2009
At 3:00 am this morning - what were you doing?
Steve and I were up with our darling, wonderful PITA Zach. He was totally wired! Was it the fact that we had some supplement problems?
What was that about? Steve was so exhausted he was mad at the little guy. Totally understood.
But what did I do? I played with him. And then we sang. I knew this would soften up Daddy a bit in his way-too-tired state. Yes Daddy was surprised when I sang to Zach and left out words - Zach filled them in.
What was that about? Steve was so exhausted he was mad at the little guy. Totally understood.
But what did I do? I played with him. And then we sang. I knew this would soften up Daddy a bit in his way-too-tired state. Yes Daddy was surprised when I sang to Zach and left out words - Zach filled them in.
Me: Twinkle twinkle littleWe also did Row Row Your Boat, the ABC song, and Ring around the Rosy. Yup - he filled in the words here and there where I paused. I was tired - but the joy of this moment, even at 3 am, will not be reduced by the exhaustion.
Zach: star
Me: How I wonder what you
Zach: are
Me: Up above the sky so
Zach: high
Me: Like a diamond in the
Zach: sky
Me: Twinkle twinkle little
Zach: star
Me: How I wonder what you
Zach: are
Tuesday, May 19, 2009
Homeschool anyone? Lessons I am learning.
CNN headline: GAO report: Special-needs kids abused in schools
I cannot believe it. Yesterday was a beautiful day, the sun was out, the temperatures were perfectly comfortable, the kids slept through the night, and my niece showed up for babysitting the kids and I could tell something was wrong. My niece was the one who called us to tell us that the car was missing. She also was the one to file the report for us because someone had to be physically present to file the report. Well, apparently, the Camillus police decided to try and accuse her of doing it. This makes no sense for so many reasons, that I am not going to waste the ASCII characters. M.'s big brown eyes had a look I recognized since she was a small young child. I was ticked that they had accused her of this, and knew she was hurting, because that is the type of person she is. I can remember her wailing as a child while watching the movie E.T. My mother and I will recount that story every now and again - M. is a sensitive person.
With all the commotion, I totally blew it. It was written on 3 separate calendar's but that means nothing. My memory is shot. We missed Sophia's big meeting with the school district. How could we? I am so angry with myself.
Thanks to Sophia's angel, also known as her occupational therapist D., Sophia will continue to receive services this summer and next year in school. I am so totally excited. D. really advocated for Sophia - she is a terrific therapist and really takes care of her kids. What would have happened if we didn't have her? Rewards must be bestowed...
Yesterday, the Government Accounting Office released a report entitled "Selected Cases of Death and Abuse at Public and Private Schools and Treatment Centers". The report discusses the use of restraints and seclusion. It does not discuss if using restraints and seclusion are beneficial. It discusses the problems found when using these. A review of several cases of abuse of these methods read as follows:
After reading the report, I wept. I will not debate using restraints or seclusion. I understand why educators may need these with certain children. What made me so upset is knowing that some people are in the wrong line of work, and rather than doing the right thing, they have abused, some even killed children, children who were of the most vulnerable stature, who their parents thought were getting appropriate care and trying to better their lives. And many of these teachers are still out there teaching.
To read the report, the GAO has it on their website.
To read an article about the report check out this at CNN.com.
Soapbox time. I have some friends who are teachers. I have little doubt that they are good at what they do. This is not directed at them, and likely a majority of the teachers out there who are doing good work. Some people go into teaching to be a teacher, and some go into it to teach. What do I mean? Some people want all the perks of teaching: summers off, decent pay (at least in NY), good benefits, pension, job security if tenured, lots of vacation. Some of these people skirt their way through the system, doing what is minimally required to keep their job. Others out there want to be teachers, meaning they have a genuine interest in providing knowledge and learning skills to students of all types. They recognize the difficulties of the position, and take the challenge. Some of these teachers are more gifted than others, but these types of teachers make a difference, although they likely don't receive the accolades they deserve. Those who do the minimally required are doing a huge disservice to our children, and thus our future.
In the analysis, I realized this holds true in many professions, but most commercial professions, especially in hard economic times, don't tolerate minimum work. Take it from me - I am on the hit list at work right now because of my inconsistent schedule.
Engineering has been a lucrative and enlightening career choice. It definitely suited me. Steve and I got along so well because our common interest in most things electronic and science related. However, I don't know if it ever was my passion. At this point, I feel like I am doing a disservice to my profession and the customer's I serve. I am becoming like those very teachers I criticized above, complacent and doing the base minimum. I am just not the sort of person who will ever feel good about themselves if they aren't able to do a good job. That is why I went down to part time status in the first place when I had children, I knew those little rug rats would be a distraction.
Life is not easy - for anyone I might add. Work is difficult. Life holds in it many distractions. I am terrible about not being easily distracted. If my zeal for what I was doing was as strong as the emotions I have from the challenges I face, perhaps work would not be a problem. But it is. It is becoming more of a funding source than anything else.
Has anyone ever taken any of those career choice personality tests before? They try to tell you career choices based on personality type. This is helpful to a point. I know I am reasonably smart, analytical and like some control of what I am working on. Yup. I take these tests a lot, and really feel like they offer very little. What I finally realized is they never hilighted something that really drives me emotionally. I look back at my life now and see a very strong personality trait (for better or worse) that I never realized I had before: I hate injustice, especially to the weak and vulnerable. I won't necessarily stand up for myself very well in many situations, but if I feel someone is taking advantage of someone else, I go berserk. More so than most people, I now realize. In fact, people think I am a little strange this way.
I watch out therapists come in and out of the house, and I wish I had their gifts. It takes each therapist at least 3 sessions to drill into my humble little brain how I should be working with Zach. I just don't have it, and have been so disappointed that way. But I want to do something to help Zach and the others out their in need.
I have begun looking at law programs with a disability component, a lo' and behold, in our very own backyard, Syracuse University not only has such a program, it is one of the few universities with a specific programs for this. It is really clear to me what I should be doing. But at $43,000 a year tuition - I have no idea how we could manage it, especially at Zach's bills estimated at $50,000 next year, and the loss of income from my job. If God's hand is involved in all this, I want to see what trick he has up his sleeve in getting the financial stuff figured out.
Feeling a bit neglected by God lately, I have to find a way to make this work if for no other reason than as a model for my kids. My children have taught me more about myself than I could ever teach them.
I cannot believe it. Yesterday was a beautiful day, the sun was out, the temperatures were perfectly comfortable, the kids slept through the night, and my niece showed up for babysitting the kids and I could tell something was wrong. My niece was the one who called us to tell us that the car was missing. She also was the one to file the report for us because someone had to be physically present to file the report. Well, apparently, the Camillus police decided to try and accuse her of doing it. This makes no sense for so many reasons, that I am not going to waste the ASCII characters. M.'s big brown eyes had a look I recognized since she was a small young child. I was ticked that they had accused her of this, and knew she was hurting, because that is the type of person she is. I can remember her wailing as a child while watching the movie E.T. My mother and I will recount that story every now and again - M. is a sensitive person.
With all the commotion, I totally blew it. It was written on 3 separate calendar's but that means nothing. My memory is shot. We missed Sophia's big meeting with the school district. How could we? I am so angry with myself.
Thanks to Sophia's angel, also known as her occupational therapist D., Sophia will continue to receive services this summer and next year in school. I am so totally excited. D. really advocated for Sophia - she is a terrific therapist and really takes care of her kids. What would have happened if we didn't have her? Rewards must be bestowed...
Yesterday, the Government Accounting Office released a report entitled "Selected Cases of Death and Abuse at Public and Private Schools and Treatment Centers". The report discusses the use of restraints and seclusion. It does not discuss if using restraints and seclusion are beneficial. It discusses the problems found when using these. A review of several cases of abuse of these methods read as follows:
The cases share the following common themes: they involved children with disabilities who were restrained and secluded, often in cases where they were not physically aggressive and their parents did not give consent
After reading the report, I wept. I will not debate using restraints or seclusion. I understand why educators may need these with certain children. What made me so upset is knowing that some people are in the wrong line of work, and rather than doing the right thing, they have abused, some even killed children, children who were of the most vulnerable stature, who their parents thought were getting appropriate care and trying to better their lives. And many of these teachers are still out there teaching.
To read the report, the GAO has it on their website.
To read an article about the report check out this at CNN.com.
Soapbox time. I have some friends who are teachers. I have little doubt that they are good at what they do. This is not directed at them, and likely a majority of the teachers out there who are doing good work. Some people go into teaching to be a teacher, and some go into it to teach. What do I mean? Some people want all the perks of teaching: summers off, decent pay (at least in NY), good benefits, pension, job security if tenured, lots of vacation. Some of these people skirt their way through the system, doing what is minimally required to keep their job. Others out there want to be teachers, meaning they have a genuine interest in providing knowledge and learning skills to students of all types. They recognize the difficulties of the position, and take the challenge. Some of these teachers are more gifted than others, but these types of teachers make a difference, although they likely don't receive the accolades they deserve. Those who do the minimally required are doing a huge disservice to our children, and thus our future.
In the analysis, I realized this holds true in many professions, but most commercial professions, especially in hard economic times, don't tolerate minimum work. Take it from me - I am on the hit list at work right now because of my inconsistent schedule.
Engineering has been a lucrative and enlightening career choice. It definitely suited me. Steve and I got along so well because our common interest in most things electronic and science related. However, I don't know if it ever was my passion. At this point, I feel like I am doing a disservice to my profession and the customer's I serve. I am becoming like those very teachers I criticized above, complacent and doing the base minimum. I am just not the sort of person who will ever feel good about themselves if they aren't able to do a good job. That is why I went down to part time status in the first place when I had children, I knew those little rug rats would be a distraction.
Life is not easy - for anyone I might add. Work is difficult. Life holds in it many distractions. I am terrible about not being easily distracted. If my zeal for what I was doing was as strong as the emotions I have from the challenges I face, perhaps work would not be a problem. But it is. It is becoming more of a funding source than anything else.
Has anyone ever taken any of those career choice personality tests before? They try to tell you career choices based on personality type. This is helpful to a point. I know I am reasonably smart, analytical and like some control of what I am working on. Yup. I take these tests a lot, and really feel like they offer very little. What I finally realized is they never hilighted something that really drives me emotionally. I look back at my life now and see a very strong personality trait (for better or worse) that I never realized I had before: I hate injustice, especially to the weak and vulnerable. I won't necessarily stand up for myself very well in many situations, but if I feel someone is taking advantage of someone else, I go berserk. More so than most people, I now realize. In fact, people think I am a little strange this way.
I watch out therapists come in and out of the house, and I wish I had their gifts. It takes each therapist at least 3 sessions to drill into my humble little brain how I should be working with Zach. I just don't have it, and have been so disappointed that way. But I want to do something to help Zach and the others out their in need.
I have begun looking at law programs with a disability component, a lo' and behold, in our very own backyard, Syracuse University not only has such a program, it is one of the few universities with a specific programs for this. It is really clear to me what I should be doing. But at $43,000 a year tuition - I have no idea how we could manage it, especially at Zach's bills estimated at $50,000 next year, and the loss of income from my job. If God's hand is involved in all this, I want to see what trick he has up his sleeve in getting the financial stuff figured out.
Feeling a bit neglected by God lately, I have to find a way to make this work if for no other reason than as a model for my kids. My children have taught me more about myself than I could ever teach them.
Monday, May 18, 2009
Bloodwork and my little hero
I realized that I never discussed how my little hero Zach did with his blood work. He was a champ. Like his sister, he really amazes me sometimes. There were 4 scripts that he went in there with - 1 for genetic testing, 1 for Fragile X, 1 for allergies, and 1 for Lyme disease.
As the phlebotomist lined up the vials of differing colors, I watched as she took out 1, then 2, then 3... and finally 13. My heart sank. Could they even get that much blood out of the little guy safely?
Zach cried at first, Steve held him in the chair, Mommy sang and pulled out toys from her bag of tricks to distract. After the initial cry for the pin stick - he was just awesome.
Steve, being the smarty pants that he is, took the stuffed Tigger toy I brought and placed it in front of the needle in Zach's arm, so he could not see it. Very useful. Then we sang "Pop goes the Weasel", which he sang the pops which was too cute. After a few minutes he began to get restless. Out came the singing Barney toy... "I love you, you love me, we're a happy family...." It lights up and plays too loud, in other words, it's obnoxious. A terrific distraction for my favorite little boy.
The minutes were passing, and there were still several vials to fill, but the blood was starting to come out slower and slower. I got mad at myself for not having made him drink more. The phlebotomist stuck the needle in a little further or jiggled it around or something, she moved the darn thing and Zach didn't like that. Several more minutes, and her wiggling the needle around continued. A few more vials, and finally she called it quites at 11 while saying: "They'll work with what I give them." I loved her attitude.
She went on to say that she was impressed with Zach. We all were. My fear was not unfounded, it was still a lot for him to go through. We are just starting to see what my little trooper is made of. They way he did inspired me, gave me hope. On this day Zach was my hero.
As the phlebotomist lined up the vials of differing colors, I watched as she took out 1, then 2, then 3... and finally 13. My heart sank. Could they even get that much blood out of the little guy safely?
Zach cried at first, Steve held him in the chair, Mommy sang and pulled out toys from her bag of tricks to distract. After the initial cry for the pin stick - he was just awesome.
Steve, being the smarty pants that he is, took the stuffed Tigger toy I brought and placed it in front of the needle in Zach's arm, so he could not see it. Very useful. Then we sang "Pop goes the Weasel", which he sang the pops which was too cute. After a few minutes he began to get restless. Out came the singing Barney toy... "I love you, you love me, we're a happy family...." It lights up and plays too loud, in other words, it's obnoxious. A terrific distraction for my favorite little boy.
The minutes were passing, and there were still several vials to fill, but the blood was starting to come out slower and slower. I got mad at myself for not having made him drink more. The phlebotomist stuck the needle in a little further or jiggled it around or something, she moved the darn thing and Zach didn't like that. Several more minutes, and her wiggling the needle around continued. A few more vials, and finally she called it quites at 11 while saying: "They'll work with what I give them." I loved her attitude.
She went on to say that she was impressed with Zach. We all were. My fear was not unfounded, it was still a lot for him to go through. We are just starting to see what my little trooper is made of. They way he did inspired me, gave me hope. On this day Zach was my hero.
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