There is one more week to the school year. One more week for Michael and one more week for my husband. I am hoping that we can enjoy the summer and then I can find a job for September. Ultimately, I would love to find a job doing something I love, but the likely hood of that is probably slim to none. I still keep my hopes up though.
Michael will have a couple of weeks off and then head back for summer school for the month of July. He will go four days a week for four hours each day. He did this last summer and I think it really helped him to maintain what he learned through the school year. My daughter, on the other hand, finishes speech therapy for the school year in 1 week. She will not be having summer sessions and I am a little concerned about her backsliding, but her speech therapist said that she would give me some things to work on with my daughter over the summer.
Before Michael heads back to school, he will have an OT eval for sensory issues. Not that I want him to have issues or another diagnosis, if he gets a diagnosis or at least if OT sees issues, maybe we can get some suggestions on how to handle certain things, like going to sleep, poop training, almost obsessive water and sand/dirt play and maybe others.
I know that there are other things to put in place, but for right now, this is what we have. We are following a more gluten and dairy free diet, which I think makes a huge difference. Thankfully once Michael is asleep now, he is pretty much asleep except for maybe a short waking for a pee time or request for water and he goes right back to sleep (instead f the multiple waking times that went on for over an hour at a time!
I am hoping to spend a lot of family time this summer. I hope we can do a lot of day trips as well as just enjoying time near home and at home. We have an open invitation to swim in a neighbors pool. I am hopeful that Michael will really enjoy being in the water and learning how to swim. We will hopefully plant our garden this weekend and we will need to spend some time taking care of the garden.
Thank you to everyone who reads what I write. It does help to write things down, especially when I know that people are reading. Thank you for commenting too. It means so much to me when people take the time to make a comment on things that I write. I plan to continue to write when I can and let go of worrying if people are reading or not.
Amy
Friday, June 8, 2012
Wednesday, May 23, 2012
Michael's Diagnosis (long post)
Yesterday, we went to get the results of Michael's testing. He was tested by a pediatric nuerologist at the Lurie Center. My husband and I have always had an inkling that there was some issue, but we were never quite sure if there really was an issue or if we were just over reacting (or at leas that was how I felt). We had an abnormal AFP test when I was pregnant with Michael, but the ultrasound looked fine so we never went further. I came down with pre-eclampsia when I was 32 weeks pregnant and ended up in the hospital for a week and on bed rest for the rest of my pregnancy until I was induced at 38 weeks. I went into labor and Michael got stuck and I ended up with a c-section and on magnesium sulfate. When I tried to breast feed, he always had a hard time latching. While I was still in the hospital, the lactation consultant noted that he had a little difficult time sucking and we had to stimulate the roof of his mouth to get him to suck. While I attempted to exclusively breast feed, Michael wasn't gaining the weight that he needed to and we needed to supplement with formula, as well as attempting to get him to latch on and pumping. When Michael, 3 months, I became pregnant with my twins and stopped breast feeding all together.
At that point, he was doing fine with bottles and maintaining his growth curve. He was developing on time with most of his milestones, except for speech. We finally got an EI evaluation for all 3 kids when Michael was 2 1/2 and the twins were just over 1 1/2. Michael was in EI for 6 months and then transitioned to the public school system with and IEP.
Michael was in a 1/2 day program for 2 1/2 hours, and after 2 months or so, we had another meeting and it was recommended that he go into a full day preschool program. He has been in the full program for about a year now. He has a wonderful teacher and wonderful para-professionals that care so much about him as well as his speech therapists. He has done so well with this program, but I still had concerns.
My husband and I decided to move forward with an evaluation, hoping to get our questions about developmental delays vs normal development just a little behind schedule. Michael was evaluated a week ago and there was some question about whether or not he fit the criteria for an autism spectrum diagnosis. Yesterday we returned to go over the results and the doctor decided that he really did fit the criteria, more specifically PDD NOS. I guess he would be considered more of a child with Asperger's , but he had an early onset speech delay. He is high functioning, but has impairment in his social skills. There is more to it than that, but at this point, his sensory needs and his social functioning seem to be the biggest areas of concern. The doctor mentioned that he most likely would have been a child that may have fallen through the cracks if he hadn't been diagnosed early. He is a wonderfully charming child with a great personality. Most likely, as he got older, he would have been considered a "quirky" kid.
As much as I hate having him have a diagnosis, I am happy that we know that there is an issue and that we are able to do something about it. With a diagnosis, there is a lot more open to us for resources. The doctor is hopeful that with supports and diet, he may grow out of it and lose the diagnosis as he gets older. At this point, I plan to be much more vigilant with his diet, as it seems to help him. I'm not going to be super Nazi about it at parties, but I am going to be more vigilant at home!
As much as I know people don't really comment, I do know that people do read this blog. I hope that if you read this, you will keep us all in your thoughts and prayers and maybe post a comment if you can. For me, comments mean a lot and are really helpful, even just knowing someone has taken the time to read what I wrote and not just hoping that someone is reading.
Thanks,
Amy
At that point, he was doing fine with bottles and maintaining his growth curve. He was developing on time with most of his milestones, except for speech. We finally got an EI evaluation for all 3 kids when Michael was 2 1/2 and the twins were just over 1 1/2. Michael was in EI for 6 months and then transitioned to the public school system with and IEP.
Michael was in a 1/2 day program for 2 1/2 hours, and after 2 months or so, we had another meeting and it was recommended that he go into a full day preschool program. He has been in the full program for about a year now. He has a wonderful teacher and wonderful para-professionals that care so much about him as well as his speech therapists. He has done so well with this program, but I still had concerns.
My husband and I decided to move forward with an evaluation, hoping to get our questions about developmental delays vs normal development just a little behind schedule. Michael was evaluated a week ago and there was some question about whether or not he fit the criteria for an autism spectrum diagnosis. Yesterday we returned to go over the results and the doctor decided that he really did fit the criteria, more specifically PDD NOS. I guess he would be considered more of a child with Asperger's , but he had an early onset speech delay. He is high functioning, but has impairment in his social skills. There is more to it than that, but at this point, his sensory needs and his social functioning seem to be the biggest areas of concern. The doctor mentioned that he most likely would have been a child that may have fallen through the cracks if he hadn't been diagnosed early. He is a wonderfully charming child with a great personality. Most likely, as he got older, he would have been considered a "quirky" kid.
As much as I hate having him have a diagnosis, I am happy that we know that there is an issue and that we are able to do something about it. With a diagnosis, there is a lot more open to us for resources. The doctor is hopeful that with supports and diet, he may grow out of it and lose the diagnosis as he gets older. At this point, I plan to be much more vigilant with his diet, as it seems to help him. I'm not going to be super Nazi about it at parties, but I am going to be more vigilant at home!
As much as I know people don't really comment, I do know that people do read this blog. I hope that if you read this, you will keep us all in your thoughts and prayers and maybe post a comment if you can. For me, comments mean a lot and are really helpful, even just knowing someone has taken the time to read what I wrote and not just hoping that someone is reading.
Thanks,
Amy
Thursday, May 3, 2012
Michael Update
Michael had his cyst removed. For a while, he had this little lump that we were told could be this big long word. It was removed about a week ago and we are on our way to his chin healing. After the surgery was complete, the doctor said that it wasn't what he thought it was, but that it was either a cyst or a lymph node (i didn't know that you had lymph nodes in your chin). We go for a follow up in about a week and a half and will find out the biopsy of the cyst.
In a week and a half we are also taking Michael for his developmental evaluation. I have been really concerned about his lack of meeting certain milestones or his lack of communicating. According to his preschool teachers, he is progressing, but not as fast as they would like to see. He has been in a a 5 hour preschool program for a year now and is still not really able to talk to us about his day. Luckily his teacher sends home a little check off on the things that happen during the day so that I can ask him about it. With lots of prodding he is able to maybe at least acknowledge that he has down certain things at school. Unlike his younger brother (by 10 1/2 months), Michael can not really communicate about his day even with simple cuing. I have noticed though, that he is improving over that last couple of weeks. Before, when you asked him who his teacher was, he would say teacher, now he can say her name and then just this morning, I asked him who was in his class and he actually named the kids without a lot of prodding. He still likes to play alone and doesn't really even play along side other kids. His imaginary play is starting, but is still pretty limited.
The one area that he actually excels in is music. He loves music and can sing many songs. He was able to sing songs before he could really say a whole lot. I love listening and watching him sing. His whole face lights up and you really now that he loves music.
One thing that I do think has helped is his diet. He has shown to be sensitive to gluten and dairy. ever since we have removed these or at least lessened them greatly in his diet, he has been improving. He is more aware and more vocal. He sleeps better and doesn't seem to have the skin issue that he was having, especially when he was eating and drinking dairy.
I am looking forward to his developmental evaluation. Part of me says that he doesn't need it, but another part of me says don't be stupid. He is four years old and he should be communicating more than he is and he should be playing more with others or at least along side others rather than always wanting to play by himself. He does well with his brother and sister, but really needs to start playing with other kids.
One other major area that he has greatly improved in is in his behavior. His impulsivity is much improved. Before, if you reprimanded him, he would throw something. Usually this was regarding asking him to put soothing down. Instead of putting it down, he would throw it and sometimes it was something very fragile. I do think that you need to talk to him in a certain way, but he is so much better.
I can't wait to either find out that there is no real issue and we don't need to worry, or find out that there is an issue and then we work on helping him with whatever issue he has. I really just need to know where to go with him and know if I am worrying needlessly or if my instincts were right and I need to do more!
Amy
In a week and a half we are also taking Michael for his developmental evaluation. I have been really concerned about his lack of meeting certain milestones or his lack of communicating. According to his preschool teachers, he is progressing, but not as fast as they would like to see. He has been in a a 5 hour preschool program for a year now and is still not really able to talk to us about his day. Luckily his teacher sends home a little check off on the things that happen during the day so that I can ask him about it. With lots of prodding he is able to maybe at least acknowledge that he has down certain things at school. Unlike his younger brother (by 10 1/2 months), Michael can not really communicate about his day even with simple cuing. I have noticed though, that he is improving over that last couple of weeks. Before, when you asked him who his teacher was, he would say teacher, now he can say her name and then just this morning, I asked him who was in his class and he actually named the kids without a lot of prodding. He still likes to play alone and doesn't really even play along side other kids. His imaginary play is starting, but is still pretty limited.
The one area that he actually excels in is music. He loves music and can sing many songs. He was able to sing songs before he could really say a whole lot. I love listening and watching him sing. His whole face lights up and you really now that he loves music.
One thing that I do think has helped is his diet. He has shown to be sensitive to gluten and dairy. ever since we have removed these or at least lessened them greatly in his diet, he has been improving. He is more aware and more vocal. He sleeps better and doesn't seem to have the skin issue that he was having, especially when he was eating and drinking dairy.
I am looking forward to his developmental evaluation. Part of me says that he doesn't need it, but another part of me says don't be stupid. He is four years old and he should be communicating more than he is and he should be playing more with others or at least along side others rather than always wanting to play by himself. He does well with his brother and sister, but really needs to start playing with other kids.
One other major area that he has greatly improved in is in his behavior. His impulsivity is much improved. Before, if you reprimanded him, he would throw something. Usually this was regarding asking him to put soothing down. Instead of putting it down, he would throw it and sometimes it was something very fragile. I do think that you need to talk to him in a certain way, but he is so much better.
I can't wait to either find out that there is no real issue and we don't need to worry, or find out that there is an issue and then we work on helping him with whatever issue he has. I really just need to know where to go with him and know if I am worrying needlessly or if my instincts were right and I need to do more!
Amy
Monday, April 23, 2012
April Vacation
It's back to normal. Last week Tom was on vacation. Having 3 little ones makes it hard to actually go on vacation. One of the nice things about where we live, is that we get to go places and have it feel like we are on vacation even though we are still at home. Last week, we did lots of day trips (it did help that the weather cooperated).
We started with going to the Franklin Park Zoo on Saturday.
We started with going to the Franklin Park Zoo on Saturday.
Then Sunday I took a Photography class and the kids went to the park
Monday we went to Newburyport and had a picnic and walked along the harbor
Tuesday we went to Rockport and played at the beach after walking and having lunch on Bearskin Neck
Wednesday we went to Barefoots Books in Concord and got a pirate book that can be sung and Michael loves it!
Thursday the kids went on their first train ride. We took them on the commuter rail from Wakefield to North Station then switched to the Green line to Park Street and then the Red Line to Harvard Square where we went to the newly re-opened Curious George Bookstore.
Waiting for the train home
Friday we took the kids for their first real bike ride. This is the first year that they are able to actually ride their bikes. We got new helmets since they have grown so much since their last helmets were bought.
That was pretty much our week. The pictures are not as good as I had hoped, but I really enjoyed our week together. Tomorrow Michael goes in to have a simple surgery to remove a cyst on his chin. It should be easy, but as with all surgeries, it is a little nerve wracking as a parent! I am sure that things will go fine and all will be well!
Happy Spring Everyone!
Amy
Monday, March 26, 2012
Michael
I finally bit the bullet and made an appointment to have Michael evaluated to see if there is more to his speech delay. I am hoping that I am just being overly worried and that they will say that he is just behind and will catch up. At this point, I do think there is more to his speech delay and since he is four, I want to have him evaluated so that he can receive more services if he needs them. The irony is that my husband was the one who was initially concerned, and now that his fears are alleviated somewhat, mine have increased. My husband is a teacher and has seen kids with autism, I don't really have experience with childhood development. If you were to ask me about dementia related issues, I could probably tease that out and see a lot of warning signs, but not childhood developmental issues. For example, I definitely picked up on the fact that my grandmother was showing signs of dementia long before I was told that she was actually diagnosed with it. My background is in nursing homes and geriatrics so I definitely fee comfortable with watching for those signs, not things like autism. Do I think that he has autism? Honestly, I don't think he does, but I am starting to realize that there are some really mild forms of autism or PDD NOS that some people wouldn't even diagnose as PDD NOS. I do think that there is more to his speech delay, but I don't know what. I guess that is why he is being evaluated. I know that he will be evaluated by a pediatric neurologist from MGH and that the evaluation will be play oriented, but that is all. I am looking forward to having this evaluation so that I am no longer worrying if there is an issue. I am concerned that there is an issue, but at least knowing that there is an issue will be better than wondering. Once I know if there is an issue I can hopefully learn what else I can do for Michael and what other services he is entitled to.
It's going to be a long couple of months til May 15th, but I am so happy that it is only a month and a half until the evaluation. I have heard that it can take up to 6 months to get an appointment so I am happy. I am also happy that we are meeting with the doctor 1 week later to discuss the results!
Amy
It's going to be a long couple of months til May 15th, but I am so happy that it is only a month and a half until the evaluation. I have heard that it can take up to 6 months to get an appointment so I am happy. I am also happy that we are meeting with the doctor 1 week later to discuss the results!
Amy
Thursday, March 15, 2012
On Being a Previvor
If you didn't know, I recently found out that I am a "previvor". A previvor is a term, I believe, that was founded by force.com to designate a term for people who are positive for the BRCA gene. I now am faced with the decision to have prophylactic surgeries to remove my ovaries and my breasts. This has been something that I have thought about for the last couple of months. I had started thinking about it before I got tested, but the reality of this is just finally hitting me. Last night was really the first time that I allowed myself to break down. I was out doing my walk/run and in the middle of it, I broke down and started crying. I started talking to my husband about what happened and he said I really need to do research and figure out what I need to do for me and that he will support me in what ever decision I make.
If you couldn't tell by the name of this blog, I believe in living a more natural life, but I also believe that there is a balance that needs to happen when living a natural life. This decision is one area that I believe needs to be balanced. I don't think that it is an easy decision to make: to either have surgery to remove parts of my body, that for a lot of women including me, are part of who we are as women or to use more alternative means to prevent cancer, breast and ovarian. Right now I am leaning to not doing surgery with the potential of maybe having my ovaries out, but not having my breasts removed. I have felt that this was going to be the way that I would go from the beginning, but I am scared of making the wrong decision and getting cancer and leaving my husband and 3 young children before it is time all because I made the wrong decision.
The New Year's goals that I have written about are based a lot on my BRCA2 + status. I think that if I can work harder on these goals and actually meet them or at least continue working on them, I have a good chance of preventing cancer. There is a lot of writing out there about having a gene and getting cancer. There is also some information on how your genes are not your destiny. I am hoping that I can make changes to my life to help change my genetic destiny. I need to do a ton of research, and I need to find people who are on the same page as I am. I haven't really figured out how to find these people, but I am hoping that there may be a group that I can find, maybe a support group type forum that actually meets in person. I love that the internet allows for all sorts of info, but I really want to meet people and talk to professionals in person.
Wish me luck on my research endeavors!
Amy
Friday, February 17, 2012
LIFE!!!!
Lately, there have been lots of ups and downs in our family's life. Some of the ups include oh so much better sleep. Pretty much every night between 6:30-6:45 we start our bedtime routine. At one point, the routine was way too complicated. I've basically pared it down to either bath time or washing up/brushing teeth, diaper changes/toilet time, 2 books, and maybe a song. We are usually complete with lights out before 7:15. Usually, the kids are asleep before 7:30, at least the twins are. Michael, on the other hand, needs his own wind down time by himself one the twins are asleep. He is usually asleep by 8:00 sometimes a little later. This has made life so much easier. I love bedtime so much more now.
The twins have turned 3 and are no longer eligible for early intervention due to age, but Eva Rose is getting speech once a week for articulation issues. She amazes me though, and even the speech therapist mentioned it today. She can say alligator pretty clearly, but she can't pronounce the ending of simple one syllable words like cat or cup. Thomas is not receiving any services. He is going to be watched, but he really doesn't need anything. Michael continues to go to a preschool program for 5 hours. His behavior seems to be testing limit setting at home and at school. I think I am going to talk to his doctor about my concerns at his 4 year visit to see if there is anything that we should have him tested for, if not just to ease my own mind.
In the down department, we have had some big issues with a family member who has been living with us. Life has been really stressful and we finally told him it was time to leave. There are way to many things to write about why it was so stressful, but I am so looking forward to getting our house and life back in order! I am not looking forward to the potential backlash from the family, but we needed to do what was right for our family not what was right for this family member. I am hoping that my kids will be better off and I know that I will be better off!
It has been an extremely mild winter here north of Boston, but I still can't wait for spring. I can't what to take the kids out and play. I can't what to go hiking and walk the zoos and farms and ll those types of things. I can't wait to start our garden again. This year, I want to start planting our early spring plants on time and not wait til it is too late.
Amy
The twins have turned 3 and are no longer eligible for early intervention due to age, but Eva Rose is getting speech once a week for articulation issues. She amazes me though, and even the speech therapist mentioned it today. She can say alligator pretty clearly, but she can't pronounce the ending of simple one syllable words like cat or cup. Thomas is not receiving any services. He is going to be watched, but he really doesn't need anything. Michael continues to go to a preschool program for 5 hours. His behavior seems to be testing limit setting at home and at school. I think I am going to talk to his doctor about my concerns at his 4 year visit to see if there is anything that we should have him tested for, if not just to ease my own mind.
In the down department, we have had some big issues with a family member who has been living with us. Life has been really stressful and we finally told him it was time to leave. There are way to many things to write about why it was so stressful, but I am so looking forward to getting our house and life back in order! I am not looking forward to the potential backlash from the family, but we needed to do what was right for our family not what was right for this family member. I am hoping that my kids will be better off and I know that I will be better off!
It has been an extremely mild winter here north of Boston, but I still can't wait for spring. I can't what to take the kids out and play. I can't what to go hiking and walk the zoos and farms and ll those types of things. I can't wait to start our garden again. This year, I want to start planting our early spring plants on time and not wait til it is too late.
Amy
Subscribe to:
Posts (Atom)