Oh my gosh - Therapist L. texted me that Zach said "help" today when she was giving him breakfast. L. had been reviewing the verbal and teaching him the sign for "help". She was helping him use his fork when eating french toast sticks, and she dropped his hand for a bit. He then garbled out a "help" for her to continue helping him use his fork.
I have to tell you - it's at moments like these that I say can he recover from this? I know - one word shouldn't give me so much hope, but it does nonetheless. This is how I get through the day.
With all that is going on, we have decided to have no more biological children. In all honesty, this isn't too hard, since we barely see each other let alone sleep in the same bed together anymore. (I fall asleep getting the kids to bed in their bed, and then usually wake in the middle of the night and do my reading and research then. ) I laugh and tease Steve that one day, it's going to be like we are just meeting each other again, like dating.
Steve and I have discussed recovery from time to time. We are shooting for it - we want this kid in college and independent. If things look like they will be going that way, Steve has agreed with me that we can handle more than we thought, and we will likely get involved in adoption, probably from the foster care system. I had tinkered with the idea before, but was totally terrified of a child that might have issues. Having been through all that we have been through, I know we could handle it now. How foolish I was all those years, wasting time and energy that could have been put to better use. What does my mother say all the time? "Youth is wasted on the young."
I encourage all of you out there to push yourself in one way or another - you too are likely stronger than you think. Go do something - mentor a child, deliver food to the elderly, give blood - I know how we appreciate those who help us, and I know there are a lot of families out there in need. OK - get off your soapbox Leanne!
Thursday, April 2, 2009
Wednesday, April 1, 2009
A good day
Zach began speaking fluently today. We woke him up and he said "good morning, Momma."
He went on to articulate exactly what he wanted for breakfast (sausage, eggs, and juice) and then read the newspaper headlines. We were shocked.
OK - April Fools.
However, yesterday Zach did have a good day. We left for work before he awoke, which I am wondering helped the situation. He is doing a lot of mimicking with therapist H. and our therapist L. has been working on getting him to eat with a spoon and fork (he has it down for the most part). This will make going out to dinner with the kids a nice thing one day.
H. has him mimicking putting a block in a cup, clapping his hands, sitting in his chair, and raising his arms above his head. These all sound like trite things to most of you - but the concept of imitating is so important in learning - don't ever take for granted when your child can do it! He also said "tickle" to H. on Monday, and yesterday told our sitter "Bye" for the first time ever when she left. I was totally elated.
We met with a new doctor of integrative medicine yesterday out in the Rochester suburb of Pittsford. Dr. W. went to Case Western for undergrad, and University of Rochester for medical school. She also did a fellowship with Dr. Weil which I found particularly impressive (for those of you PBS watchers, you likely know who he is. If not check out the wikipedia page.) She reviewed Zach's records with us and discussed what alternative/supplemental approaches we had tried. She told us she feels he likely does not have Lyme disease. She recommended one additional supplement to the one's we are already giving Zach, and increased dosage on two of the others. She also recommended some tests which we will have run. I could tell that Steve really liked her, better than probably any other doctor we have come across thus far. She is very level headed, but open-minded to things that weren't taught to her in medical school (which is quite a bit, especially nutrition). Her year's fellowship with Dr. Weil has made her very well rounded.
Doctors know a lot about medications because they are constantly "educated" on them by your good ol' pharmaceutical representatives. There are no supplement/herbal representatives out there knocking on doctor's doors that I know of. Sometimes I wonder if the FDA would regulate this stuff and get it into the business model of prescription drugs, would doctors be recommending these things more?
I will discuss Zach's regimen in a later post. Nothing that awe inspiring - but may be of interest to some of you who might be interesting in trying some of these approaches yourself.
So today is a Wedesday, and April is Autism awareness month. Look for me in future posts to involve you in my advocacy project for the month: Getting our New York State representatives to pass a bill on insurance coverage of autism treatments.
He went on to articulate exactly what he wanted for breakfast (sausage, eggs, and juice) and then read the newspaper headlines. We were shocked.
OK - April Fools.
However, yesterday Zach did have a good day. We left for work before he awoke, which I am wondering helped the situation. He is doing a lot of mimicking with therapist H. and our therapist L. has been working on getting him to eat with a spoon and fork (he has it down for the most part). This will make going out to dinner with the kids a nice thing one day.
H. has him mimicking putting a block in a cup, clapping his hands, sitting in his chair, and raising his arms above his head. These all sound like trite things to most of you - but the concept of imitating is so important in learning - don't ever take for granted when your child can do it! He also said "tickle" to H. on Monday, and yesterday told our sitter "Bye" for the first time ever when she left. I was totally elated.
We met with a new doctor of integrative medicine yesterday out in the Rochester suburb of Pittsford. Dr. W. went to Case Western for undergrad, and University of Rochester for medical school. She also did a fellowship with Dr. Weil which I found particularly impressive (for those of you PBS watchers, you likely know who he is. If not check out the wikipedia page.) She reviewed Zach's records with us and discussed what alternative/supplemental approaches we had tried. She told us she feels he likely does not have Lyme disease. She recommended one additional supplement to the one's we are already giving Zach, and increased dosage on two of the others. She also recommended some tests which we will have run. I could tell that Steve really liked her, better than probably any other doctor we have come across thus far. She is very level headed, but open-minded to things that weren't taught to her in medical school (which is quite a bit, especially nutrition). Her year's fellowship with Dr. Weil has made her very well rounded.
Doctors know a lot about medications because they are constantly "educated" on them by your good ol' pharmaceutical representatives. There are no supplement/herbal representatives out there knocking on doctor's doors that I know of. Sometimes I wonder if the FDA would regulate this stuff and get it into the business model of prescription drugs, would doctors be recommending these things more?
I will discuss Zach's regimen in a later post. Nothing that awe inspiring - but may be of interest to some of you who might be interesting in trying some of these approaches yourself.
So today is a Wedesday, and April is Autism awareness month. Look for me in future posts to involve you in my advocacy project for the month: Getting our New York State representatives to pass a bill on insurance coverage of autism treatments.
Sunday, March 29, 2009
Revolving Door
What a whirlwind of activity on Friday - here are the therapists for the day:
H. then M. and B., then and interviewee for this summer showed up K., then D. showed up for Sophia, then C. showed up for Zach, and finally L. showed up in the afternoon. That is 7 therapists in one day folks. I can only imagine what my neighbors think with all this activity in our driveway/parking lot. My head was spinning. I managed a cup of coffee and a banana throughout all this.
There was so much being said to me, and so many women talking to me I just wanted to run away at some point . I am not used to being around women, and it was really hard for me to handle. They talk so much and so fast! (I am sure I am like this too BTW) I felt like I was in a cyclone at times. I definitely get where guys come from now when they talk about "yippee" women.
Part of my issue is that I do have a hearing comprehension problem - as a child, my mother used do tell me I needed to listen better - and I thought I did have a listening problem. I read book after book after book on how to be a better listener. Then I realized I am a partial visual learner, and that I easily get overwhelmed with a lot of words being thrust at me, and lose comprehension. Oddly enough, words can flow out of me like water (so many people have told me to be a lawyer). I have always had problems with understanding innuendos, being able to figure things out contextually, the subtleties that a lot of people pick up in conversation. I need clear and concise (organized doesn't hurt either) descriptions of things. Gosh - I suck.
Back to the topic at hand, Zach had a ton of people coming at him, and basically decided that he would make himself a necklace for me or is that on me? Get this visual in your head - he basically held on to my neck with both arms and hung off of me all day long. He did, at some point, take a nap, which allowed me the luxury of cleaning the house and cooking dinner for our company. He's 30 pounds. I think I need a chiropractor.
So Saturday, while playing dentist with me (he loves to stick his fingers in my mouth and touch my teeth) I said "teeth" to him and he said it right back. My mother was in the room to witness it. I laughed because I told her: "Did you hear that - he said teeth! Probably won't hear it again for another 2 years, but I will add it to the list anyway." And that's how that works.
While at my mom's - my sister and her husband came over to the house. They were eager to see Zach point, which of course, there was nothing he really wanted, except me, so he wasn't "performing". At some point, I did feel like I was trying to show off a trick by my puppy and not a capability of my child. A dash like a freak show.
Speaking of freak show, earlier in the day, my whacked sister (not the one with the husband) decided to stick herself in a conversation between my mother and me yesterday. As she began to yell at me about how I didn't understand neurologists (I was telling Mom how the last neurologist appointment went with Zach) she went on to tell me that her daughter is epileptic and autistic, but that they couldn't afford to pay for an official diagnosis. This is the same sister, who according to her "autistic" daughter, when I first notified the family of what was going on with Zach stated something to the effect that I was overreacting and trying to get attention for myself.
As I listened to her bizarre rant, I looked at my mother who just lowered her eyes to the spectacle before us. Then the doorbell rang - God saved me once again! He sent a couple of Jehovah's witnesses to talk to Melanie. While she was being "enlightened", I told my mother that my sister was whacked and I really didn't want to hear her nonsense and that if someone thinks I would choose this for myself they had to be insane, clinically and unequivocally mad. This is my family support: an ill mother, the once in awhile putting my child on display, too busy with his own life/mess to check in, and complete lunacy with a touch of bizarre jealousy love. *sigh*
Poor Mom was feeling terrible - I believe she caught our stomach bug on top of the unexplained swelling in her legs and sciatica. The kids loved spending time with her though. I have to cherish these moments, even if they are interspersed with complete and utter absurdities.
H. then M. and B., then and interviewee for this summer showed up K., then D. showed up for Sophia, then C. showed up for Zach, and finally L. showed up in the afternoon. That is 7 therapists in one day folks. I can only imagine what my neighbors think with all this activity in our driveway/parking lot. My head was spinning. I managed a cup of coffee and a banana throughout all this.
There was so much being said to me, and so many women talking to me I just wanted to run away at some point . I am not used to being around women, and it was really hard for me to handle. They talk so much and so fast! (I am sure I am like this too BTW) I felt like I was in a cyclone at times. I definitely get where guys come from now when they talk about "yippee" women.
Part of my issue is that I do have a hearing comprehension problem - as a child, my mother used do tell me I needed to listen better - and I thought I did have a listening problem. I read book after book after book on how to be a better listener. Then I realized I am a partial visual learner, and that I easily get overwhelmed with a lot of words being thrust at me, and lose comprehension. Oddly enough, words can flow out of me like water (so many people have told me to be a lawyer). I have always had problems with understanding innuendos, being able to figure things out contextually, the subtleties that a lot of people pick up in conversation. I need clear and concise (organized doesn't hurt either) descriptions of things. Gosh - I suck.
Back to the topic at hand, Zach had a ton of people coming at him, and basically decided that he would make himself a necklace for me or is that on me? Get this visual in your head - he basically held on to my neck with both arms and hung off of me all day long. He did, at some point, take a nap, which allowed me the luxury of cleaning the house and cooking dinner for our company. He's 30 pounds. I think I need a chiropractor.
So Saturday, while playing dentist with me (he loves to stick his fingers in my mouth and touch my teeth) I said "teeth" to him and he said it right back. My mother was in the room to witness it. I laughed because I told her: "Did you hear that - he said teeth! Probably won't hear it again for another 2 years, but I will add it to the list anyway." And that's how that works.
While at my mom's - my sister and her husband came over to the house. They were eager to see Zach point, which of course, there was nothing he really wanted, except me, so he wasn't "performing". At some point, I did feel like I was trying to show off a trick by my puppy and not a capability of my child. A dash like a freak show.
Speaking of freak show, earlier in the day, my whacked sister (not the one with the husband) decided to stick herself in a conversation between my mother and me yesterday. As she began to yell at me about how I didn't understand neurologists (I was telling Mom how the last neurologist appointment went with Zach) she went on to tell me that her daughter is epileptic and autistic, but that they couldn't afford to pay for an official diagnosis. This is the same sister, who according to her "autistic" daughter, when I first notified the family of what was going on with Zach stated something to the effect that I was overreacting and trying to get attention for myself.
As I listened to her bizarre rant, I looked at my mother who just lowered her eyes to the spectacle before us. Then the doorbell rang - God saved me once again! He sent a couple of Jehovah's witnesses to talk to Melanie. While she was being "enlightened", I told my mother that my sister was whacked and I really didn't want to hear her nonsense and that if someone thinks I would choose this for myself they had to be insane, clinically and unequivocally mad. This is my family support: an ill mother, the once in awhile putting my child on display, too busy with his own life/mess to check in, and complete lunacy with a touch of bizarre jealousy love. *sigh*
Poor Mom was feeling terrible - I believe she caught our stomach bug on top of the unexplained swelling in her legs and sciatica. The kids loved spending time with her though. I have to cherish these moments, even if they are interspersed with complete and utter absurdities.
Wednesday, March 25, 2009
Relationships and Maintenance Mode
Tuesday was a good day for Zach. Wednesday... well... not so much. He is feeling fine. He just was very cranky during his therapy sessions. Happy as a clam when I came home. What does this mean? Is this bad? For the therapists I suppose it is. I have read so many books where parents discuss how their children were oblivious to them and to anyone else, for my own selfish reasons, I am glad he is not like that. I feel love by the way he wants me to hold him and hang out with him.
This describes a lot of Steve and me. I am a huggy/touchy sort of person, Steve not so much. Steve is not one to dole out compliments - no "you are beautiful", "I like it when you wear this", "you're meatloaf is better than my mom's", nothing. I have girlfriends who think this is some sort of almost emotional abuse. (too many fairytales, my friends) I dated guys who told me I was the cat's meow for years, yet Steve is the one who was "the one". Why? Two things:
1) He doesn't compliment me (this is true) , but he also does not criticize - really. He has never told me I was stupid, foolish, or WRONG. He does not point out my faults ever. (I am likely totally aware of many of them.) I know he is unusual.
2) He just wants to hang out with me and that's all I need. He does not tell us often that he loves us, but, for the most part, we all know it. This is, to me, the ultimate in demonstrative. He is there for us and just likes to hang with us. He doesn't play softball with the boys, hang out at bars with the guys, stare at a TV watching overpaid, steroid-laced athletes. He cooks us dinner, and hangs with us.
I am not sure how many other people would be comfortable in a relationship like ours. Maybe I am as unusual as Steve. Are we creating some sort of weird class of kids whose values in relationships will be so contrary to what is deemed normal that they will have difficulty cultivating their own friendships? Probably. Lord knows I was not terrific at making friends (true friends) most of my life, and if I had to place a wager, Steve wasn't Mr. Popularity either. Don't get me wrong, we both have friends - some of who have been with us for a long long time - but it is not our forte.
Will Zach have friends? This is the most bizarre question I can ponder - and probably most of you who don't have kids on the spectrum will never relate. This concept blows my mind as much as what caused Zach's autism.
So. things are not really in a steady state, but with this stomach bug continuing to plague us, I have just decided to lay low and get done what is essential right now. I cannot think - I cannot act, I can only manage to get by. So things are likely falling off my plate that I should be attending to, but I cannot worry about that right now.
In the world Steve and I work in, April 1 is mid-year filled with mid year reviews, Program Management Reviews and the like. This means we have a lot going on at work that has to be attended to. Basically, work has to get done right now, no excuses. If you have to stay late, get here early, come in on the weekends, take it home, you do it. No stress here.
Can't wait to get the report on how Zach did for today. Do I send him to school or continue the home-based program? This will be the thrust of my thoughts for the next few weeks, I am sure.
This describes a lot of Steve and me. I am a huggy/touchy sort of person, Steve not so much. Steve is not one to dole out compliments - no "you are beautiful", "I like it when you wear this", "you're meatloaf is better than my mom's", nothing. I have girlfriends who think this is some sort of almost emotional abuse. (too many fairytales, my friends) I dated guys who told me I was the cat's meow for years, yet Steve is the one who was "the one". Why? Two things:
1) He doesn't compliment me (this is true) , but he also does not criticize - really. He has never told me I was stupid, foolish, or WRONG. He does not point out my faults ever. (I am likely totally aware of many of them.) I know he is unusual.
2) He just wants to hang out with me and that's all I need. He does not tell us often that he loves us, but, for the most part, we all know it. This is, to me, the ultimate in demonstrative. He is there for us and just likes to hang with us. He doesn't play softball with the boys, hang out at bars with the guys, stare at a TV watching overpaid, steroid-laced athletes. He cooks us dinner, and hangs with us.
I am not sure how many other people would be comfortable in a relationship like ours. Maybe I am as unusual as Steve. Are we creating some sort of weird class of kids whose values in relationships will be so contrary to what is deemed normal that they will have difficulty cultivating their own friendships? Probably. Lord knows I was not terrific at making friends (true friends) most of my life, and if I had to place a wager, Steve wasn't Mr. Popularity either. Don't get me wrong, we both have friends - some of who have been with us for a long long time - but it is not our forte.
Will Zach have friends? This is the most bizarre question I can ponder - and probably most of you who don't have kids on the spectrum will never relate. This concept blows my mind as much as what caused Zach's autism.
So. things are not really in a steady state, but with this stomach bug continuing to plague us, I have just decided to lay low and get done what is essential right now. I cannot think - I cannot act, I can only manage to get by. So things are likely falling off my plate that I should be attending to, but I cannot worry about that right now.
In the world Steve and I work in, April 1 is mid-year filled with mid year reviews, Program Management Reviews and the like. This means we have a lot going on at work that has to be attended to. Basically, work has to get done right now, no excuses. If you have to stay late, get here early, come in on the weekends, take it home, you do it. No stress here.
Can't wait to get the report on how Zach did for today. Do I send him to school or continue the home-based program? This will be the thrust of my thoughts for the next few weeks, I am sure.
Tuesday, March 24, 2009
Coffee
I feel like such a drama queen now. Zach appears to be back to his jovial self. Of course I left him in a heap on the ground with tears streaming down his face and something that sort of sounded like Momma coming from his mouth this morning. (No working Mom guilt there, eh?)Therapist L. called to tell me he had a good session and that as she was exiting, he even said "coffee" as clear as day. Totally non-functional - but he was listening to the conversation between the sitter and the therapist about coffee and he chimed in. I love it.
Tomorrow was supposed to be his meeting with the school district to discuss what is to come, but with the stomach bug going around, I decided to cancel the meeting rather than wait and see how we are doing tomorrow. (I believe there will be several parties present, and I really don't want to cancel last minute with so many people involved. Just play it safe. ) This is probably a good thing, since I have done little in the way of preparation for the meeting.
Damned stomach bug is hitting me pretty hard. No more fever - but cannot tolerate much in the way of food. I basically want fruit all the time. Weird. Steve thinks he had the bug 2 weeks ago, and Sophie started running a fever again yesterday. What is with that? Zachie is better and that makes me feel good.
In an effort to give feedback, I decided to send a note to the county on Zach's progress. Here is how it read:
After all the work everyone did to get ABA in place for us, I thought I would send along an update on how Zach is doing. The "team" officially kicked off March 2, and there were some tears about all the new people coming and going. Nothing too bad that the therapists couldn't handle. After getting to know Zach, H. and I talked about what we would like to see Zach work on. We have been trying since July of 2008 to get him to point, and he did it with Steve when looking at a few books, but never any other time. We decided to start here.
Well, as of March 14, Zach began to independently point! We were shocked. I don't think we expected this so fast, likely since we had been working on it since July. H. and L. gave us and all the people who work with Zach (including 2 of our babysitters) instructions on how to carry out their plan - and it worked. I haven't seen my husband smile like that in a very long time; it was wonderful. He has been ill this past week, and fairly cranky (he had flu like symptoms on top of an ear infection) yet he has maintained the point. Sometimes he needs a little prompting, but he appears to be getting better at it everyday.
12 days to get something that we had been working on for 8 months. I am more confident then ever that Zach is getting the approach he needs and will continue to surprise us. We are so grateful to H. and L. that words cannot express. I think our OT para was even surprised. Our new SLP is open to seeing what this is all about, and we appreciate her attitude.
Please share our story with others (especially anyone who helped get us this team) that we have already seen progress and are very happy. If you ever need a parent representative, feel free to contact me.
-Leanne Morphet
very happy momma to beautiful Zachary
Saturday, March 21, 2009
Break down - POP
Last evening I made plans with my dear husband's encouragement, to go to the Mountain Goat training run in downtown Syracuse. The Mt. Goat is a very hilly 10 mile race, and they do training runs starting in March to help people ramp up. They are fantastic and it looks like they had 300-400 people there this morning. I called my therapist L. up and see if she was interested since she is supposed to be training for a 1/2 marathon. She met me downtown with some of my other friends, and away we went. They announced that the course was 5.5 miles - and I was nervous; I haven't run in several months mind you, and two times out at 3 miles in the last 2 weeks is not considered adequate preparation.
Well, it didn't take long to realize this was going to be a tough run. At some point, I told L. to take off, that I needed to walk. Eventually I finished, after run/walking the course. It was the worst run I had ever completed in my life. L. and I had planned on Starbucks, but I had to pass. I noticed that the 26 degree weather had me extremely chilled, more than ususal. I decided to run and get gas for the car, which I did. Then I stopped in a store. Then I started crying uncontrollably - I just broke down. I pulled the car in a friends drive way and went to the door, no one home. I could not understand why I was so upset. I called another friend, and left a message on her answering machine. Then I hauled off to Pier One, where I allowed myself 3 minutes of crying and in I went. I worse my sunglasses in the store. After feeling I had given myself adequate time to calm down, I asked a sales girl for help. I spent $250 - which is extremely unlike me. My friend K. called and said it was OK to stop over. I went over to her house and told her how I freaked out and how I wasn't sure why. I actually joked that perhaps it had something to do with the terrible run that morning. After chit chatting with her and her husband, off I went home. It was a rough ride. I thought for sure I was going to hurl.
I arrived home and stuck the thermometer in my ear: 101.9. Ahhhh. So that explains it all - not that I don't have stuff to be upset about - but the way it happened really stunned me. When I have a fever, it always kicks my butt. That explains the awful run, too.
Even though I cannot eat, and feel cruddy, it feels kind of nice to lie around the house with the kids, all of us in our jammies. Zach appears to be feeling much better, and Sophie is getting there. Mind you - according to the doctor last weekend, Zach just had an ear infection. Steve told me that she never looked down his throat, or feel his abdomen. freaking doctors.
Mom's furnace kicked out on her last night bringing the temperature in her house down to 52 degrees. She didn't call the furnace company until the morning. She feels awful from not being able to sleep, and her legs are incredibly swollen. The doctors decided to take her off some of the pain medication, because they think it is contributing to the swelling. She is in a decent amount of pain, and I am totally unable to do anything to help her.
Zach said "Pop" for me yesterday. He also said "up" today. He is pointing fairly well. He is not as cranky. I am getting that hopeful feeling again, as I am reading a book which is the story of a young man and his quest to fulfill his dreams of going to college and other vignettes.
All this cruddy stuff is happening, am I crazy to think things will get better? I often wonder what I did to have such bad luck - but I also think how lucky I am to have two beautiful children who Steve and I love, a great husband, employment in a bad economic time, and the ability to be a reasonable advocate for my kids. While there are several people who have disappointed me, I am meeting some exceptional people on this journey whom I would have never known. That would have been a terrible loss to not know such souls exist in this world. They have little reason to help us much as they do, they are not family afterall. What could make me feel more hopeful then that?
Still at 102 degrees. uugghh
Well, it didn't take long to realize this was going to be a tough run. At some point, I told L. to take off, that I needed to walk. Eventually I finished, after run/walking the course. It was the worst run I had ever completed in my life. L. and I had planned on Starbucks, but I had to pass. I noticed that the 26 degree weather had me extremely chilled, more than ususal. I decided to run and get gas for the car, which I did. Then I stopped in a store. Then I started crying uncontrollably - I just broke down. I pulled the car in a friends drive way and went to the door, no one home. I could not understand why I was so upset. I called another friend, and left a message on her answering machine. Then I hauled off to Pier One, where I allowed myself 3 minutes of crying and in I went. I worse my sunglasses in the store. After feeling I had given myself adequate time to calm down, I asked a sales girl for help. I spent $250 - which is extremely unlike me. My friend K. called and said it was OK to stop over. I went over to her house and told her how I freaked out and how I wasn't sure why. I actually joked that perhaps it had something to do with the terrible run that morning. After chit chatting with her and her husband, off I went home. It was a rough ride. I thought for sure I was going to hurl.
I arrived home and stuck the thermometer in my ear: 101.9. Ahhhh. So that explains it all - not that I don't have stuff to be upset about - but the way it happened really stunned me. When I have a fever, it always kicks my butt. That explains the awful run, too.
Even though I cannot eat, and feel cruddy, it feels kind of nice to lie around the house with the kids, all of us in our jammies. Zach appears to be feeling much better, and Sophie is getting there. Mind you - according to the doctor last weekend, Zach just had an ear infection. Steve told me that she never looked down his throat, or feel his abdomen. freaking doctors.
Mom's furnace kicked out on her last night bringing the temperature in her house down to 52 degrees. She didn't call the furnace company until the morning. She feels awful from not being able to sleep, and her legs are incredibly swollen. The doctors decided to take her off some of the pain medication, because they think it is contributing to the swelling. She is in a decent amount of pain, and I am totally unable to do anything to help her.
Zach said "Pop" for me yesterday. He also said "up" today. He is pointing fairly well. He is not as cranky. I am getting that hopeful feeling again, as I am reading a book which is the story of a young man and his quest to fulfill his dreams of going to college and other vignettes.
All this cruddy stuff is happening, am I crazy to think things will get better? I often wonder what I did to have such bad luck - but I also think how lucky I am to have two beautiful children who Steve and I love, a great husband, employment in a bad economic time, and the ability to be a reasonable advocate for my kids. While there are several people who have disappointed me, I am meeting some exceptional people on this journey whom I would have never known. That would have been a terrible loss to not know such souls exist in this world. They have little reason to help us much as they do, they are not family afterall. What could make me feel more hopeful then that?
Still at 102 degrees. uugghh
Thursday, March 19, 2009
Shakey
Zach is still pretty fussy. However, just a few moments ago I received a text from our therapist L. and although we left Zach screaming this is what her message said:
Sophia is now running a fever, so we juiced her up with Tylenol and out the door we went. I feel like a terrible mother some times. She is with my niece Melissa, and she was OK with me leaving. I was not OK with my leaving, but am in such a bad place at work, feel like I have no choice.
We have recently found out that Sophie has had a little boy go after her, which initially sounded benign, but what we are finding out is actually more serious than we thought. This is really over the top now. I feel like I am a modern day chapter of the book of Job. We are in the process of trying to figure out exactly what happened, but I can tell you this much, from what I know, it is very serious. Steve and I are once again devastated at what is happening to another one of our babies. We are really not in a good place to talk any more details about this now, until we consult with some professionals on how to deal with this.
I have been trembling since we realized yesterday evening what was going on with Sophia. I am afraid that my faith is shaking as much as my hands are right now.
I don't think I can pray right now - can some of you out there pray for us - and more importantly for Sophia right now?
He is happy & playing with the game using the poles to fish and i'm turning it off and he is independently point to the on switch w/out me asking what he wantsGotta love texting, eh?
Sophia is now running a fever, so we juiced her up with Tylenol and out the door we went. I feel like a terrible mother some times. She is with my niece Melissa, and she was OK with me leaving. I was not OK with my leaving, but am in such a bad place at work, feel like I have no choice.
We have recently found out that Sophie has had a little boy go after her, which initially sounded benign, but what we are finding out is actually more serious than we thought. This is really over the top now. I feel like I am a modern day chapter of the book of Job. We are in the process of trying to figure out exactly what happened, but I can tell you this much, from what I know, it is very serious. Steve and I are once again devastated at what is happening to another one of our babies. We are really not in a good place to talk any more details about this now, until we consult with some professionals on how to deal with this.
I have been trembling since we realized yesterday evening what was going on with Sophia. I am afraid that my faith is shaking as much as my hands are right now.
I don't think I can pray right now - can some of you out there pray for us - and more importantly for Sophia right now?
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