Wednesday, August 13, 2008
Test and Dr Update
We survived the sleep deprived tests and after a trying day at the hospital on Friday, were able to check out of the hospital at about 3 in the afternoon (we had been there since 7). Evan is definately a fighter. He did not want to let the nurse weigh him or check his height, bp, and oxygen level, and it just got more difficult (which meant we had to be very creative about convincing him to let us do everything). One nurse convinced him that he got to wear a cool yellow hat like on Curious George, he didn't completely buy it, but it did help for the EEG. He was given laughing gas for the EEG and then was sedated for the MRI and EKG. It was kind of a scary day, but everything turned out fine. He had an eye dr appt yesterday and everything is normal there, we just have to have him checked again in a year. He had to have 3 sets of drops and he was not too happy, but otherwise it went well. Hope all is going well with everyone this week. I'm feeling a little bit exhausted. I could use a vacation... lol.
Thursday, August 7, 2008
EEG, MRI, and EKG tomorrow morning
I've been on the phone with at least 3-4 different nurses from Meritcare today... just preparing for Evan's tests tomorrow. So, he can't have chocolate or caffeine today, and he can't eat after midnight tonight. The EEG test is a sleep deprived test, so I need to keep him awake all night, if possible. Not sure how this is gonna work. I guess I'm gonna be sleep deprived too... lol. If he does fall asleap and I can't keep him awake, I need to wake him up at 4 am and then keep him up until we go into the hospital at 7. He will be sedated for the tests. I tried to nap this afternoon, but I'm kind of tired, so I'm not sure how I'll stay awake to keep him awake all night. Well, wish us luck... we should be all done at noon and then maybe spend the rest of the afternoon napping... who knows. I might need some creative ideas on how to keep him up...
Thursday, July 31, 2008
Gastroenterologist
We met with a doctor last week to discuss Evans constipation and potty training issues. He did some blood tests and determined that Evan does not have celiac disease. We also had bloodwork sent to San Antonio for the reasearch study. I received the box of supplies the morning of Evans apt. and I took it with to the apt on the chance that they would do all the bloodwork at the same time.
I really liked this dr too. He was very helpful. He explained that it may take a while for potty training and that part of it may be fear after the fissure and rectal prolapse episode and that a second factor is the low muscle tone, which makes it hard to go also. I learned from other parents at the conference in July that it is common for 18q- kids to have constipation issues, and they also have low tone, so this connection makes sense.
Our plan is to give Evan Miralax every day, and I need to keep a diary of the dose and the time and then keep track of his BMs. I have started this, but it's hard to keep the same routine every day. I will need to adjust it as needed also. We started giving the Miralax between 3 and 4, so that he will have a BM right after supper. It doesn't seem to take that long to work though, so I will have to see which time is going to work the best. We are then going to reward his BMs in his pull up and then eventually double reward him for going in the potty after supper.. and hopefully we will have an exact time by then, so it will be a routine. We eat and then go potty.
This is kind of confusing and will take some getting used to and some figuring out, but I'm glad that I now have a plan that will hopefully work for Evan. It's good to know that there is a plan and that eventually we'll have this potty training done with once and for all.
I really liked this dr too. He was very helpful. He explained that it may take a while for potty training and that part of it may be fear after the fissure and rectal prolapse episode and that a second factor is the low muscle tone, which makes it hard to go also. I learned from other parents at the conference in July that it is common for 18q- kids to have constipation issues, and they also have low tone, so this connection makes sense.
Our plan is to give Evan Miralax every day, and I need to keep a diary of the dose and the time and then keep track of his BMs. I have started this, but it's hard to keep the same routine every day. I will need to adjust it as needed also. We started giving the Miralax between 3 and 4, so that he will have a BM right after supper. It doesn't seem to take that long to work though, so I will have to see which time is going to work the best. We are then going to reward his BMs in his pull up and then eventually double reward him for going in the potty after supper.. and hopefully we will have an exact time by then, so it will be a routine. We eat and then go potty.
This is kind of confusing and will take some getting used to and some figuring out, but I'm glad that I now have a plan that will hopefully work for Evan. It's good to know that there is a plan and that eventually we'll have this potty training done with once and for all.
Results of genetic tests
We finally received some test results. I had called the Childrens Hospital to inquire about the test results that we were supposed to hear back on in Feb/Mar and it took forever to get through and for them to get back to me. They said they had sent me a letter and everything would be going through Fargo now, so we won't be following up with them at Childrens Hospital anymore. I waited and waited for a letter. Didn't get one. I talked to Evans pediatrician and she said that she got a letter that did nothing more than confirm that he had chromosome 18 deletion, which we already knew. She said to ask her if I wanted a copy of the letter. I decided to get a copy and called and talked to her nurse, her nurse put me through to med records and they wouldn't give me a copy... said I had to go back to childrens to get a copy. I eventually emailed the pediatrcian and she sent me a copy of the letter and the results from Childrens right before I left for my trip.
So when I was on my trip, I read through Evans records a few times and found out some interesting information. First off, there was a basic genetic test done when Evan was first seen in the genetics clinic, before he was 1 . . Interestingly enough noone told us, not sure when they did the blood test, unless they snuck the test in when he had blood drawn for something else or when he was there for his circumcision re-do surgery or something. I remember distinctly that at that time the geneticist and ENT dr both made such a point of saying how they didn't think tests were necessary because Evan was just too cute. Seriously, they didn't look at all the other signs. One of my friends told me that if there are 4 things noted, genetic testing should be routine. Evan definately had at least 4 things at the time; stenotic ear canals, hearing loss, low muscle tone, dev delay, no growth on chart between milestone visits, not being able to sit up until after 9 months, not being able to walk until almost 2.
Well the original test results showed that all was normal, but that test didnt check for deletions, it only checked to see that all chromosomes were present or something like that. Reading the cytogentetics report, it looks like they only took a small sample from 18q21 to test and didn't test anything else.
When I read through the results from last June, that they told me were not detailed enough, I found some disticnt information... although the results from November are much more informative. Still they have all the info I need, I just don't know what it means until I can actaully talk to a genetic dr about it. I am waiting to get the referrel for the genetic dr from Grand Forks who travels to Fargo, but haven't heard about that yet. So anyway, his test results reveal a "copy loss in 18q22.3->q23". I'll report back when I find out what exactly that means, it does account for his stenotic ear canals... which is the reason the radiologist back in 2004 recomended genetic testing.
There is more info in these results, but I just don't know how to read it, how to make make sense of it, or what it means. The blood clotting tests that revealed von willebrands disorder was first entered into the charts as normal and then later corrected as abnormal and it was noted that it was a typo. Hmmm... gives me a lot of confidence in minneapolis children's hospital.
Each of these tests results were documented within a couple weeks, but we were not informed for multiple months... and even then, they didn't really say anything. Its like they would rather not talk to me because they didn't know what to say. You would think that specialists would be able to at least give me more explanations about how it all works, instead of avoiding me. At least now we are on the right track. I just find it interesting that now I feel like I know and understand some of this more than some of the doctors do.
I learned a lot from the conference and have notes to go through, so I'll try to post some of the suggestions here too. One of the things on my list is to see a endocronologist and test Evan for growth hormone deficiency.
At the conference, I also enrolled Evan in a research study. If we qualify for any of their on site resarch studies, they will fly us out to San Antonio for a week. That would be very neat, and very interesting. The doctors there are very informed on chromosome 18 and through the research are going to be able to make more information available to parents and doctors in the future.
I'm feeling much better, and know much more, but still have a long way to go with learning and figuring things out. At least, it is all coming together.
So when I was on my trip, I read through Evans records a few times and found out some interesting information. First off, there was a basic genetic test done when Evan was first seen in the genetics clinic, before he was 1 . . Interestingly enough noone told us, not sure when they did the blood test, unless they snuck the test in when he had blood drawn for something else or when he was there for his circumcision re-do surgery or something. I remember distinctly that at that time the geneticist and ENT dr both made such a point of saying how they didn't think tests were necessary because Evan was just too cute. Seriously, they didn't look at all the other signs. One of my friends told me that if there are 4 things noted, genetic testing should be routine. Evan definately had at least 4 things at the time; stenotic ear canals, hearing loss, low muscle tone, dev delay, no growth on chart between milestone visits, not being able to sit up until after 9 months, not being able to walk until almost 2.
Well the original test results showed that all was normal, but that test didnt check for deletions, it only checked to see that all chromosomes were present or something like that. Reading the cytogentetics report, it looks like they only took a small sample from 18q21 to test and didn't test anything else.
When I read through the results from last June, that they told me were not detailed enough, I found some disticnt information... although the results from November are much more informative. Still they have all the info I need, I just don't know what it means until I can actaully talk to a genetic dr about it. I am waiting to get the referrel for the genetic dr from Grand Forks who travels to Fargo, but haven't heard about that yet. So anyway, his test results reveal a "copy loss in 18q22.3->q23". I'll report back when I find out what exactly that means, it does account for his stenotic ear canals... which is the reason the radiologist back in 2004 recomended genetic testing.
There is more info in these results, but I just don't know how to read it, how to make make sense of it, or what it means. The blood clotting tests that revealed von willebrands disorder was first entered into the charts as normal and then later corrected as abnormal and it was noted that it was a typo. Hmmm... gives me a lot of confidence in minneapolis children's hospital.
Each of these tests results were documented within a couple weeks, but we were not informed for multiple months... and even then, they didn't really say anything. Its like they would rather not talk to me because they didn't know what to say. You would think that specialists would be able to at least give me more explanations about how it all works, instead of avoiding me. At least now we are on the right track. I just find it interesting that now I feel like I know and understand some of this more than some of the doctors do.
I learned a lot from the conference and have notes to go through, so I'll try to post some of the suggestions here too. One of the things on my list is to see a endocronologist and test Evan for growth hormone deficiency.
At the conference, I also enrolled Evan in a research study. If we qualify for any of their on site resarch studies, they will fly us out to San Antonio for a week. That would be very neat, and very interesting. The doctors there are very informed on chromosome 18 and through the research are going to be able to make more information available to parents and doctors in the future.
I'm feeling much better, and know much more, but still have a long way to go with learning and figuring things out. At least, it is all coming together.
July update
I have really had a crazy, busy month. I am so glad that I joined the Chromosome Registry at www.chromosome 18.org in and got Evan involved in DD Case Managment services through Southeast Human Services. I went to the Chromosome 18 conference in Texas at the beginning of July and met a ton of amazing people. It is so great to not feel so alone in all this! At the conference I found out so much information and have a longer list of all the doctors to see and/or therapies to try.
I finally have a handle on my home life, and can take a step back when I need to.
Evan is really doing well. I can understand him more, and he is more expressive. Of course, he still has his tantrums and he has his high energy and we definately have difficult days or difficult moments... but I am also much more patient and much more able to navigate through these now.
Jordan is really restless sometimes. He really needs an outlet for his excess energy and needs to have an outlet for his emotions and frustrations too. I've been trying to find him a sibling support group, but haven't had much luck with finding a local group.
Evan just had a neurology apt and now we have him scheduled for a sedated EEG and MRI yesterday. The neurologist said that shes not sure his seizures were fibrile, because they only say that if there is nothing else wrong with the child... i.e. no dev delays, no chromosome abnormailities, etc... This was a good apt. The neurologist this time was very helpful and perceptive, after the test, we will follow up with her in Sept. and see where it goes from there. I need to be careful when making these apts too close together, because each of these appointments can be mentally and emotionally exhausting and draining.
Evan will be starting Headstart in August, and will be doing PT, OT, and Speech at home in addition to at school. His latest fear is the wind, hopefully we can solve this and move on the the next fixation, lol.
Jordan is going into 3rd grade in August. He will be gettting some speech therapy in school also. Hopefully we'll figure out his attention and excess energy issues... I've thought he's had ADHD since he was 4, but haven't been able to prove that to his teachers... even when they see it, they dismiss it sometimes... I guess it really depends on the teacher. Sometimes he doesn't even remember, and I don't think he ALWAYS acts like that on purpose.
Having 2 strong willed, high enery kids is tough... but its my life, it's what God gave me, and I manage just fine..
I finally have a handle on my home life, and can take a step back when I need to.
Evan is really doing well. I can understand him more, and he is more expressive. Of course, he still has his tantrums and he has his high energy and we definately have difficult days or difficult moments... but I am also much more patient and much more able to navigate through these now.
Jordan is really restless sometimes. He really needs an outlet for his excess energy and needs to have an outlet for his emotions and frustrations too. I've been trying to find him a sibling support group, but haven't had much luck with finding a local group.
Evan just had a neurology apt and now we have him scheduled for a sedated EEG and MRI yesterday. The neurologist said that shes not sure his seizures were fibrile, because they only say that if there is nothing else wrong with the child... i.e. no dev delays, no chromosome abnormailities, etc... This was a good apt. The neurologist this time was very helpful and perceptive, after the test, we will follow up with her in Sept. and see where it goes from there. I need to be careful when making these apts too close together, because each of these appointments can be mentally and emotionally exhausting and draining.
Evan will be starting Headstart in August, and will be doing PT, OT, and Speech at home in addition to at school. His latest fear is the wind, hopefully we can solve this and move on the the next fixation, lol.
Jordan is going into 3rd grade in August. He will be gettting some speech therapy in school also. Hopefully we'll figure out his attention and excess energy issues... I've thought he's had ADHD since he was 4, but haven't been able to prove that to his teachers... even when they see it, they dismiss it sometimes... I guess it really depends on the teacher. Sometimes he doesn't even remember, and I don't think he ALWAYS acts like that on purpose.
Having 2 strong willed, high enery kids is tough... but its my life, it's what God gave me, and I manage just fine..
Monday, June 2, 2008
Good news update
Ok, so I have been a very bad blogger. It's been since January. I was just waiting for winter to be finally over, so now I should be blogging more again. I have good news. Evan is doing good. He surprises me more and more every day. There are still challenges, but now I have more of a network of support. I joined the chromosome 18 registry and research society and I also joined the 18q- listserve. Evan was approved for help through Southeast Human Services and now has a DD (Developmental Dissabilities) case manager, who has been very helpful. I can't thank him enough for his help. I'm planning to go to the Chromosome 18 conference in July, and I might get to meet another local family in Fargo... whose child also has Chromosome 18. I was feeling so overwhelmed by everything during the fall/winter months... but my prayers have been answered and everything is all coming together. Thank you to all my family and friends who have been there and who have prayed for us during all this.
Sunday, January 6, 2008
Positive thoughts...
I picked up the kids from Alex today, and I was super tired because I didn't sleep well last night and I took lots of caffeine, a dew and then a double shot of expresso in my turtle mocha at caribou... plus Tim was at least a half an hour late.. so I drank my coffee and read my "God will make a way" book. It was funny. Jordan was telling me funny stories and stuff... Evan was screaming about his legos that his dad let him bring and put in the backseat of my car most of the way home. The funny thing was, I just turned up the music and took it in stride. I was calm and collected, even when i felt headachy and kind of like i was getting an upset stomache from all the caffeine. We got home and managed to keep things under control, despite Evan's best attempts to freak out. So I just held him for a while. That is one thing that I learned in "Parenting with Love and Logic" class.
I was really contemplating things on the drive to Alex today... sometimes that extra time is really good for me. It forces me to think and figure things out. So the sermon at church today was about really letting God into our lives this year and not just expecting him to fix everything. Then I was thinking about being a single parent and all that too. I get the feeling that sometimes people think that I want them to solve my problems, or that I need a man to help raise my kids. That is so not true. It is hard at times, but I have totally excepted it. And I know that I can do it on my own, except that I'm not alone... God is there helping me along, as long as I keep remembering to allow him to help. Sometimes it does get lonely and frustrating. But seriously I would never expect a guy to come in and save the day or raise my kids. I can do that just fine on my own. All I need is friends to be there for me when I need the extra shoulder to cry on, or when I just need to vent a bit. I don't even need a man in my life. I would sure like to find my soulmate someday, but at this point... I'm not counting on it.
I was really contemplating things on the drive to Alex today... sometimes that extra time is really good for me. It forces me to think and figure things out. So the sermon at church today was about really letting God into our lives this year and not just expecting him to fix everything. Then I was thinking about being a single parent and all that too. I get the feeling that sometimes people think that I want them to solve my problems, or that I need a man to help raise my kids. That is so not true. It is hard at times, but I have totally excepted it. And I know that I can do it on my own, except that I'm not alone... God is there helping me along, as long as I keep remembering to allow him to help. Sometimes it does get lonely and frustrating. But seriously I would never expect a guy to come in and save the day or raise my kids. I can do that just fine on my own. All I need is friends to be there for me when I need the extra shoulder to cry on, or when I just need to vent a bit. I don't even need a man in my life. I would sure like to find my soulmate someday, but at this point... I'm not counting on it.
Thursday, January 3, 2008
Here is my compiled list of behaviors for Evan's doctors. He sees an ENT doctor and audiologist for his hearing loss and he gets PT, OT, and Speech therapy through the public school system. It's hard to say which behavious are related to the hearing loss, which are related to the 18q- chromosome deletion disorder, or which ones may be sensory processing disorder or something else. I'm going to add and update this list as necessary.
Evan has been diagnosed with the following: Hearing Loss, 18q- chromosome deletion, Van Willebrands disease, Asthma, Exceema.
· Mild hearing loss (35 decibels, instead of 30). His hearing loss is caused by narrow ear canals that don't have a direct link to the ear drum, it seems like the curve into a pocket so that the doctors can't visibly see his ear drum. He wears a baja softband hearing aid.
· Low muscle tone - especially legs and facial muscle (very flexible, bendy, doesn't have a full smile). This makes him super flexible and hard to hold or carry, besides the fact that he is rather tall and pretty strong for a 4 year old.
· Bruises easily
· Falls frequently. One day he was sitting on a picnic table at the park and he fell over and landed on his head and hit his hearing aid, which was then broken and needed to be sent back to the company to get fixed. I don't know how some of these things happen
· Sensitive to loud noises
· Hates bright lights, especially in the morning (sun light is the worst)
· Fearless when it comes to danger (doesn't learn from injuries). He'll get hurt and immediatly try to do it again.
· I was amazed at how big his eyes were and how he seemed to stare at things so intently when he was a baby. I always thought he was very inquisitive.
· He still puts everything in his mouth and is always sucking on or chewing on something (plastic toys, pop bottle covers, pens, rubber tires off of toys or parts of pens, marker covers, paper, cardboard). There seems to be no limit. He'd eat it if he could. I routinely have to inspect his mouth and sometimes have to remove a wad of paper or some item that he could choke on.
· He knows how to go potty on the potty and is excited when he does it, but he hasn't been consistant. He will try to remove his pull-up in the living room. He will stick his hand in his dirty diaper. He will refuse to let me change his diaper or pull-up sometimes.
· He will pull my hair, try to bite, dig his chin or elbows into me, and climb on me frequently
· He wants to be carried and held a lot
· He repeats words and phrases, especially TV commercials and he gets MAD if you don't repeat it or aknowledge him the way he expects you to. Sometimes when you respond, he still is upset and keeps on.repeating commercial text over and over in a high pitched voice... even when he doesn't even understand it.. (The latest commercial phrases he repeats: puppets in prison, I love it I love it I love it, I want a salad...). Sometimes he'll say "I, I, I, I... before he gets out what he wants to say".
· It's hard to know exactly what he understands sometimes. And it seems to vary; like there are good days and bad days. Sometimes when you ask him a question, he'll answer yes or no.... but other times he will stare blankly. Sometimes he will just repeat what you said rather than answer the question.
· Can't reason with him. Doesn't respond to consequences, rewards consistantly. Sometimes I can get him in the house if I tell him he can have a popsicle when we get inside, but it doesn't always work. He freaks out for a popsicle, even when he didn't willingly come inside. It takes tons of patience, repetition, and persistance to get him to respond either way. If I remove him from a store, he freaks out and refuses to let me buckle him in the car seat and then he screams bloody murder all the way home (sometimes he continues for up to 1/2 hour). It is great fun when all kinds of people stare and look at me like I'm doing something wrong.
· He will throw a tantrum and kick and scream and yell and run away from me in a store or outside and I have to carry him out of the store or into the house as he nearly throws my back out or almost forces me to drop him
· He likes to line up objects
· Dumps water on self on purpose, plays in toilet water, one day I caught him with his head in the toilet, chewing on hairbrush handle,
· Spills drink at table, floor, or on himself; seems to be on purpose, dips food in drink, dumps drink on food (on plate) sometimes
· Unusually high activity level. He is very active. He just goes and goes and goes. Its hard for the rest of us to even keep track of him. He won't take naps, has a hard time going to bed before 10, but is up by 7 am or earlier. Extreemly difficult to get him to unwind or calm down.
· Physical clumsiness or carelessness
· Poor body awareness
· Tendency to be easily distracted
· Impulsive physical or verbal behavior
· Difficulty learning new movements
· Seems to have difficulty in making transitions from one situation to another
· Has developmental delays in speech, language and motor skills, and learning difficulties/delays in academic achievement.
· Constantly climbs or jumps from high places
· Tries to sit on top of who ever is next to him
· Seems to bump into things frequently
· Sometimes does dangerous things, doesn't seem to feel much pain
Evan has been diagnosed with the following: Hearing Loss, 18q- chromosome deletion, Van Willebrands disease, Asthma, Exceema.
· Mild hearing loss (35 decibels, instead of 30). His hearing loss is caused by narrow ear canals that don't have a direct link to the ear drum, it seems like the curve into a pocket so that the doctors can't visibly see his ear drum. He wears a baja softband hearing aid.
· Low muscle tone - especially legs and facial muscle (very flexible, bendy, doesn't have a full smile). This makes him super flexible and hard to hold or carry, besides the fact that he is rather tall and pretty strong for a 4 year old.
· Bruises easily
· Falls frequently. One day he was sitting on a picnic table at the park and he fell over and landed on his head and hit his hearing aid, which was then broken and needed to be sent back to the company to get fixed. I don't know how some of these things happen
· Sensitive to loud noises
· Hates bright lights, especially in the morning (sun light is the worst)
· Fearless when it comes to danger (doesn't learn from injuries). He'll get hurt and immediatly try to do it again.
· I was amazed at how big his eyes were and how he seemed to stare at things so intently when he was a baby. I always thought he was very inquisitive.
· He still puts everything in his mouth and is always sucking on or chewing on something (plastic toys, pop bottle covers, pens, rubber tires off of toys or parts of pens, marker covers, paper, cardboard). There seems to be no limit. He'd eat it if he could. I routinely have to inspect his mouth and sometimes have to remove a wad of paper or some item that he could choke on.
· He knows how to go potty on the potty and is excited when he does it, but he hasn't been consistant. He will try to remove his pull-up in the living room. He will stick his hand in his dirty diaper. He will refuse to let me change his diaper or pull-up sometimes.
· He will pull my hair, try to bite, dig his chin or elbows into me, and climb on me frequently
· He wants to be carried and held a lot
· He repeats words and phrases, especially TV commercials and he gets MAD if you don't repeat it or aknowledge him the way he expects you to. Sometimes when you respond, he still is upset and keeps on.repeating commercial text over and over in a high pitched voice... even when he doesn't even understand it.. (The latest commercial phrases he repeats: puppets in prison, I love it I love it I love it, I want a salad...). Sometimes he'll say "I, I, I, I... before he gets out what he wants to say".
· It's hard to know exactly what he understands sometimes. And it seems to vary; like there are good days and bad days. Sometimes when you ask him a question, he'll answer yes or no.... but other times he will stare blankly. Sometimes he will just repeat what you said rather than answer the question.
· Can't reason with him. Doesn't respond to consequences, rewards consistantly. Sometimes I can get him in the house if I tell him he can have a popsicle when we get inside, but it doesn't always work. He freaks out for a popsicle, even when he didn't willingly come inside. It takes tons of patience, repetition, and persistance to get him to respond either way. If I remove him from a store, he freaks out and refuses to let me buckle him in the car seat and then he screams bloody murder all the way home (sometimes he continues for up to 1/2 hour). It is great fun when all kinds of people stare and look at me like I'm doing something wrong.
· He will throw a tantrum and kick and scream and yell and run away from me in a store or outside and I have to carry him out of the store or into the house as he nearly throws my back out or almost forces me to drop him
· He likes to line up objects
· Dumps water on self on purpose, plays in toilet water, one day I caught him with his head in the toilet, chewing on hairbrush handle,
· Spills drink at table, floor, or on himself; seems to be on purpose, dips food in drink, dumps drink on food (on plate) sometimes
· Unusually high activity level. He is very active. He just goes and goes and goes. Its hard for the rest of us to even keep track of him. He won't take naps, has a hard time going to bed before 10, but is up by 7 am or earlier. Extreemly difficult to get him to unwind or calm down.
· Physical clumsiness or carelessness
· Poor body awareness
· Tendency to be easily distracted
· Impulsive physical or verbal behavior
· Difficulty learning new movements
· Seems to have difficulty in making transitions from one situation to another
· Has developmental delays in speech, language and motor skills, and learning difficulties/delays in academic achievement.
· Constantly climbs or jumps from high places
· Tries to sit on top of who ever is next to him
· Seems to bump into things frequently
· Sometimes does dangerous things, doesn't seem to feel much pain
Wednesday, January 2, 2008
Christmas and New Years holiday events
I haven't posted for a while, so I'll have to try and remember what has been going on lately. Evan has been obsessed with my Christmas decorations, ever since I put them up a few weeks ago. He loves to play with my nativity set and rearracnge all my decorations. He also puts the Christmas stockings on his hands and runs around the house. He has knocked over our table top tree a couple of times and he managed to steal baby Jesus from my nativity set. It has been a couple weeks, and it still hasn't turned up. I have no idea what he did with it.
We went to the mall and Evan sat on Santa's lap after about 1/2 hour of coaxing. Then on the weekend we went to Santa Villiage again and when Evan sat on Santa's lap there, they were overjoyed because this was the same boy who was scared to death of Santa two weeks before.
During the holiday break from school, Evans energy was up as usual... no naps, and staying up until 10 or 11 every night. Evan has school again tomorrow, so hopefully now we can get back to a more normal routine. We went to Hillsboro today and had lunch with grandma and did some laundry. On the way home, I looked in the back seat hoping to see Evan sleeping away... but instead saw that he had dumped out the entire basket of clean folded clothes all over the really dirty back seat. I was not too impressed. When we got home, I treid to get him to take a nap, but instead I almost fell asleap and he didn't. Hmmmm. Some days can be quite frustrating.
Yesterday he had way too much energy, and I couldn't keep up with him. He was running around the house saying "I'm Santa, Ho, Ho, Ho, Merry Christmas" over and over and over again. LOL. I really hope it settles down a bit when he goes back to school.
We went to the mall and Evan sat on Santa's lap after about 1/2 hour of coaxing. Then on the weekend we went to Santa Villiage again and when Evan sat on Santa's lap there, they were overjoyed because this was the same boy who was scared to death of Santa two weeks before.
During the holiday break from school, Evans energy was up as usual... no naps, and staying up until 10 or 11 every night. Evan has school again tomorrow, so hopefully now we can get back to a more normal routine. We went to Hillsboro today and had lunch with grandma and did some laundry. On the way home, I looked in the back seat hoping to see Evan sleeping away... but instead saw that he had dumped out the entire basket of clean folded clothes all over the really dirty back seat. I was not too impressed. When we got home, I treid to get him to take a nap, but instead I almost fell asleap and he didn't. Hmmmm. Some days can be quite frustrating.
Yesterday he had way too much energy, and I couldn't keep up with him. He was running around the house saying "I'm Santa, Ho, Ho, Ho, Merry Christmas" over and over and over again. LOL. I really hope it settles down a bit when he goes back to school.
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