Again I am sorry that I have not written much lately. A toddle with a ton of energy has been keeping me very busy. My sweet little Boogie has been doing good. All of our Therapy sessions and and appointments as of late are going good. Occupational Therapy has done wonders for Boogie, we are seeing lots of new and exciting things going on with her. She is still going 2 times a week to see her OT, Lisa, who she has a great relationship with. She watches for her to come out the door to get her then smiles and claps excitedly when she finally appears. Our new adventure as of Late has been Physical Therapy. Boogies Tibal Mucsles are weak and we are working on strengthening them up. So 2 days a week we are seeing the OT and PT, a very busy deal for us i tell ya..
On June 1 we moved from my parents house to our own Apartment in town. It is a nice sized 2 bedroom on the edge of town. SO far all is good. The complex has 12 units in it and we hardly ever hear any noise from any one. We got a medical waver for Alyson to have a dog, her pediatrician gave us the go ahead. So now we have a full time companion for for Boogie. She loves her room and her big girl bed covered in Dora.
I know this one is short but there will be more to come I promise.
Monday, June 24, 2013
Monday, February 4, 2013
Well for a Monday our day has gone well. We began our day at 5 AM and we were off and running. My DH had a job interview and we needed to be there at 7:30 AM. Then after a 2 hour interview/wait we were off to occupational Therapy.
OT was a new adventure yet again. We discussed the Brushing and compressions we have been doing. I think they are helpful in some ways and in others they are not so helpful. My DG gets very hyper when we brush her. Like she will do circles and she is not able to focus on any one thing. She also does not seen to be very happy while I do her brushing. Then it is about 45 minutes of hectic crazy and she will then just calm. It works good for bedtime. I like that and I like that we are able to see the improvement even with the not so good. Joint Compression's are going OK. She laughs at them but I have been trying to make them fun for her.
We also discussed and are currently trying a compression vest with her. She seems to like that. She will calm right down as soon as we have her all snug in it. She likes it. We had it on her when we put her into her car seat and she was content to ride with it on. She fell asleep almost right away. I am looking forward to seeing how it works through the week.
Toady the Head Start Teacher also came. We did lots of talking about the sensory stuff today. She was going to see if there is any way to find some assistance for getting our Sensory stuff with some help. She wants us to work on Animal sounds and sensory bins. She is impressed by my Binder system too. I keep everything in binders so when I need to info I know right where it all is.
I finished the Bayley Scales for Toddler Development questionnaire too. It was strange one to do as it is not just for my DG's age group. It covers ages one to three. So lots of stuff not real clear for her, I am also wondering what parents do allow their children to do some of the things on the questions.
Tomorrow will be another day of stuff to do. Special Education will be coming to our place to finish the Evaluation on her. Then I am hoping they will figure out a schedule for home visits. I am not sure what all they are going to look at and work on with her but the more help we can get now, hopefully will reduce the stuff we need to do later on in her life.
OT was a new adventure yet again. We discussed the Brushing and compressions we have been doing. I think they are helpful in some ways and in others they are not so helpful. My DG gets very hyper when we brush her. Like she will do circles and she is not able to focus on any one thing. She also does not seen to be very happy while I do her brushing. Then it is about 45 minutes of hectic crazy and she will then just calm. It works good for bedtime. I like that and I like that we are able to see the improvement even with the not so good. Joint Compression's are going OK. She laughs at them but I have been trying to make them fun for her.
We also discussed and are currently trying a compression vest with her. She seems to like that. She will calm right down as soon as we have her all snug in it. She likes it. We had it on her when we put her into her car seat and she was content to ride with it on. She fell asleep almost right away. I am looking forward to seeing how it works through the week.
Toady the Head Start Teacher also came. We did lots of talking about the sensory stuff today. She was going to see if there is any way to find some assistance for getting our Sensory stuff with some help. She wants us to work on Animal sounds and sensory bins. She is impressed by my Binder system too. I keep everything in binders so when I need to info I know right where it all is.
I finished the Bayley Scales for Toddler Development questionnaire too. It was strange one to do as it is not just for my DG's age group. It covers ages one to three. So lots of stuff not real clear for her, I am also wondering what parents do allow their children to do some of the things on the questions.
Tomorrow will be another day of stuff to do. Special Education will be coming to our place to finish the Evaluation on her. Then I am hoping they will figure out a schedule for home visits. I am not sure what all they are going to look at and work on with her but the more help we can get now, hopefully will reduce the stuff we need to do later on in her life.
Sunday, February 3, 2013
We have had a very busy couple of days.
On Friday I took my DG to her first Occupational Therapy session. I think it went good. My MIL went with us and she got to hear first hand how my DG's SPD is making things hard for her, and she was glad she went with I think. We are now Brushing and doing joint compressions every 90 minutes when DG is awake. I am not seeing a whole lot of diffrence so far, but we are just begining to do these things. I have noticed that she likes to be brushed at times and at others she is not terribly happy to be kind of "pinned" down and she wants to run. I am hoping that she will balence out.
On Saturday we spent the morning playing with our Niece and nephue. I have been trying to explain to them about the stuff going on with our DG but it seems to be falling on Deaf ears, both the kid's and on thier parents. I had to break down and tell them all that if they were unable to respect our wishes for our daughter then we would not come around to visit anymore. It is to much for all of us. Saturday Afternoon we went to the Pinewood Derby for our nephue's Boy Scout Troop. OVERWHELMED is just not enough to cover it all. Our DG was so anxious and unhappy, at one point she took a nap to escape from it all. She handled it really well however.
We attended church with my MIL and FIL before we had a nice dinner with them at Denny's. It is so rare that they get time away from the other grandkids to visit with Alyson. She had a ton of fun playing and having fun with them. We spent the night to avoid driving home in the snow and dark.
We strted the day off getting up and leaving to go eat Breakfast with the KoC's at the Dayton Church and we had a good time. We then drove home and we had a pleasent afternoon hanging out together just the three of us. We finished the day playing and watching the Super Bowl!
Starting another week tomorrow. Occupational Therapy and an Interview for Daddy to hopefully get a new job!
On Friday I took my DG to her first Occupational Therapy session. I think it went good. My MIL went with us and she got to hear first hand how my DG's SPD is making things hard for her, and she was glad she went with I think. We are now Brushing and doing joint compressions every 90 minutes when DG is awake. I am not seeing a whole lot of diffrence so far, but we are just begining to do these things. I have noticed that she likes to be brushed at times and at others she is not terribly happy to be kind of "pinned" down and she wants to run. I am hoping that she will balence out.
On Saturday we spent the morning playing with our Niece and nephue. I have been trying to explain to them about the stuff going on with our DG but it seems to be falling on Deaf ears, both the kid's and on thier parents. I had to break down and tell them all that if they were unable to respect our wishes for our daughter then we would not come around to visit anymore. It is to much for all of us. Saturday Afternoon we went to the Pinewood Derby for our nephue's Boy Scout Troop. OVERWHELMED is just not enough to cover it all. Our DG was so anxious and unhappy, at one point she took a nap to escape from it all. She handled it really well however.
We attended church with my MIL and FIL before we had a nice dinner with them at Denny's. It is so rare that they get time away from the other grandkids to visit with Alyson. She had a ton of fun playing and having fun with them. We spent the night to avoid driving home in the snow and dark.
We strted the day off getting up and leaving to go eat Breakfast with the KoC's at the Dayton Church and we had a good time. We then drove home and we had a pleasent afternoon hanging out together just the three of us. We finished the day playing and watching the Super Bowl!
Starting another week tomorrow. Occupational Therapy and an Interview for Daddy to hopefully get a new job!
Wednesday, January 30, 2013
So much has been going on. Earlier in January our Darling Girl was Diagnosed with Sensory Integration Disorder, also known as Sensory Processing Disorder. More information and an explanation can be found here:
http://www.spdfoundation.net/index.html
This diagnosis has come after a year of visits to a Neurologist, working with physical Therapist and doing home PT for some other issues. Alyson was originally sent to PT for Cortical thumbs. She would always have her thumb tucked under her fingers instead of over her fingers. So we did the therapy, we had her wear her Mkies and things got better. She always balls her hands into fists when sleeping, even now after all is said and done. Alyson does not like to have anything on her hands, EVER. If she is playing and something gets on her hands she will stop and wipe her hands off right away. Paint, food, gel, anything on her hands is not a good thing for her.
Alyson has a hard time with certain food textures and she never chews on her toys or anything else. We had also noticed from day one she hated being swaddled, at the Hospital the nurses would wrap her up and she would just cry and cry till we unwrapped her little body. The tag in her shirt will bother her and she will scratch at the offender till she will leave open scratches on her poor little neck. She never cared to eat baby food as it was never the right consistency. Alyson also does not care to be cuddled or to look you in the eyes as you hold her. It is very rare to see her do that. Alyson eats only a handful of things, green Veggies are her favorite, cheese, yogurt most days, french fries-no salt, dry cereal, puffcorn, and some other crunchy snack foods. She is not a huge fan of sweets, she would prefer her veggies.
My daily routine is to get up, eat breakfast and then I set her loose to play with her toys. This is my time to get some things done. If we are having a a good day I can get the dishwasher loaded or a load of laundry started. Then she and I get to play. I try to get a sensory bin or two out, we play with her toys or we will go outside, when it is nice enough too. Then it is time for lunch. We spend some time eating and then I clean up while she runs off some more energy. After lunch I try to get her down for a couple hour nap. I have to hold her either on my lap or next to me in my bed to get her to sleep for a few hours. After nap time she plays some more. I am able to finish up anything I need to do hopefully before we do more playtime. Around 5 or so I begin to cook some dinner for us while she plays with the stuff in one of the cupboards or I turn on a Dora show for her. We eat dinner, and this is usually followed by a bath. Bath time has it's very own routine which I will fill in in a moment. After her bath is done we will call daddy or snuggle up with Grandma for a bit.
Bath time for Alyson is a whole routine all in it's own glory. We begin by telling her while she is eating Dinner that after dinner we will do a bath. Then I strip her down after she is done eating and I have the water all warmed up for her. I take her to the bath and I have to set her down in the tub while the water is running. I then shampoo her hair while she cries and screams at me. Then I try to attempt using a body wash on her and get her all clean and shiny. After I have rinsed her hair and she is all clean I will put the plug in the tub and start to fill her tub with water and I have to add the bubbles to the water. She will play for a while and when she runs out of water after she pulls the plug out I have to wrap her in a hooded towel and dry her while she cries. If I need to put lotion on I will do that while she thrashes around and around and screams and cries. So all in all Bath time is not fun for mommy I do love to watch her play freely in the water when she is enjoying it. But the beginning and the end is hard.
To get Alyson to sleep, I head to my room about seven to start winding down and we video call with Daddy when he is at Grandma and Grandpa D's house. We chat with daddy for about an hour then I give her a bottle of milk and she will drink that down and rest, the second milk bottle is usually the one that gets her to go to sleep, Whew! No if only she will stay asleep. I am able to get her to sleep for at least an hour, then i will try to move her to her crib, this results in a baby awake and unhappy. I will try to lay her down and get her to go to sleep again but most nights I am up till 1 or 2 in the morning with a fully awake child who is not going to sleep. I have tried so many things. I have the white noise CD going and her cozy blanket, and her weighted blanket are all things we have to help her sleep. No luck. I am frustrated and I am at a loss as to what to do. I have discovered the reason for this trouble is the SPD. Her mind does not stop to process the information her body sends and she just is never shutting down for good sleep, therefore neither does mommy.
My DG is the center of my world, I am willing to do anything to help her. We have had 3 evaluations so far to figure out the best plan for her. The clinic has us scheduled 2 days a week for in clinic therapy. And we are scheduled for 1 more evaluation to get in home help through the school district. We also have HeadStart one day a week. So my schedule is filling up fast.
Sunday- 10:00 Church & Our family day
Monday- 9:30 AM clinic OT, shopping for the week
Tuesday- Hopefully our in home day.
Wednesday- no therapy or home visits scheduled so far
Thursdays- 8:30 In home HeadStart & in the afternoon we have socials at TCC 2 times a month
Friday- 8:30 Clinic OT then spend the day with Grandma & Grandpa D.
Saturday- Morning with Grandma & Grandpa D- Family activities
This is just the places we will go. I am also looking at a schedule to follow for home sensory therapy and keeping us all on a healthy sleep schedule and diet. So I am even more busy. I do not mind however. I actually think this will benefit all of my family members being on a schedule. Now if I can make the schedule work, we may get more sleep and feel better over all.
So a lot of Information for the mind to process. I know I am now on a new path in life I never expected to go down. My husband and Father-in-Law both share the same issues as my DG but neither has been DX with anything. She is a happy child and she makes all of us so happy.
http://www.spdfoundation.net/index.html
This diagnosis has come after a year of visits to a Neurologist, working with physical Therapist and doing home PT for some other issues. Alyson was originally sent to PT for Cortical thumbs. She would always have her thumb tucked under her fingers instead of over her fingers. So we did the therapy, we had her wear her Mkies and things got better. She always balls her hands into fists when sleeping, even now after all is said and done. Alyson does not like to have anything on her hands, EVER. If she is playing and something gets on her hands she will stop and wipe her hands off right away. Paint, food, gel, anything on her hands is not a good thing for her.
Alyson has a hard time with certain food textures and she never chews on her toys or anything else. We had also noticed from day one she hated being swaddled, at the Hospital the nurses would wrap her up and she would just cry and cry till we unwrapped her little body. The tag in her shirt will bother her and she will scratch at the offender till she will leave open scratches on her poor little neck. She never cared to eat baby food as it was never the right consistency. Alyson also does not care to be cuddled or to look you in the eyes as you hold her. It is very rare to see her do that. Alyson eats only a handful of things, green Veggies are her favorite, cheese, yogurt most days, french fries-no salt, dry cereal, puffcorn, and some other crunchy snack foods. She is not a huge fan of sweets, she would prefer her veggies.
My daily routine is to get up, eat breakfast and then I set her loose to play with her toys. This is my time to get some things done. If we are having a a good day I can get the dishwasher loaded or a load of laundry started. Then she and I get to play. I try to get a sensory bin or two out, we play with her toys or we will go outside, when it is nice enough too. Then it is time for lunch. We spend some time eating and then I clean up while she runs off some more energy. After lunch I try to get her down for a couple hour nap. I have to hold her either on my lap or next to me in my bed to get her to sleep for a few hours. After nap time she plays some more. I am able to finish up anything I need to do hopefully before we do more playtime. Around 5 or so I begin to cook some dinner for us while she plays with the stuff in one of the cupboards or I turn on a Dora show for her. We eat dinner, and this is usually followed by a bath. Bath time has it's very own routine which I will fill in in a moment. After her bath is done we will call daddy or snuggle up with Grandma for a bit.
Bath time for Alyson is a whole routine all in it's own glory. We begin by telling her while she is eating Dinner that after dinner we will do a bath. Then I strip her down after she is done eating and I have the water all warmed up for her. I take her to the bath and I have to set her down in the tub while the water is running. I then shampoo her hair while she cries and screams at me. Then I try to attempt using a body wash on her and get her all clean and shiny. After I have rinsed her hair and she is all clean I will put the plug in the tub and start to fill her tub with water and I have to add the bubbles to the water. She will play for a while and when she runs out of water after she pulls the plug out I have to wrap her in a hooded towel and dry her while she cries. If I need to put lotion on I will do that while she thrashes around and around and screams and cries. So all in all Bath time is not fun for mommy I do love to watch her play freely in the water when she is enjoying it. But the beginning and the end is hard.
To get Alyson to sleep, I head to my room about seven to start winding down and we video call with Daddy when he is at Grandma and Grandpa D's house. We chat with daddy for about an hour then I give her a bottle of milk and she will drink that down and rest, the second milk bottle is usually the one that gets her to go to sleep, Whew! No if only she will stay asleep. I am able to get her to sleep for at least an hour, then i will try to move her to her crib, this results in a baby awake and unhappy. I will try to lay her down and get her to go to sleep again but most nights I am up till 1 or 2 in the morning with a fully awake child who is not going to sleep. I have tried so many things. I have the white noise CD going and her cozy blanket, and her weighted blanket are all things we have to help her sleep. No luck. I am frustrated and I am at a loss as to what to do. I have discovered the reason for this trouble is the SPD. Her mind does not stop to process the information her body sends and she just is never shutting down for good sleep, therefore neither does mommy.
My DG is the center of my world, I am willing to do anything to help her. We have had 3 evaluations so far to figure out the best plan for her. The clinic has us scheduled 2 days a week for in clinic therapy. And we are scheduled for 1 more evaluation to get in home help through the school district. We also have HeadStart one day a week. So my schedule is filling up fast.
Sunday- 10:00 Church & Our family day
Monday- 9:30 AM clinic OT, shopping for the week
Tuesday- Hopefully our in home day.
Wednesday- no therapy or home visits scheduled so far
Thursdays- 8:30 In home HeadStart & in the afternoon we have socials at TCC 2 times a month
Friday- 8:30 Clinic OT then spend the day with Grandma & Grandpa D.
Saturday- Morning with Grandma & Grandpa D- Family activities
This is just the places we will go. I am also looking at a schedule to follow for home sensory therapy and keeping us all on a healthy sleep schedule and diet. So I am even more busy. I do not mind however. I actually think this will benefit all of my family members being on a schedule. Now if I can make the schedule work, we may get more sleep and feel better over all.
So a lot of Information for the mind to process. I know I am now on a new path in life I never expected to go down. My husband and Father-in-Law both share the same issues as my DG but neither has been DX with anything. She is a happy child and she makes all of us so happy.
Tuesday, January 15, 2013
So it has been a while since I last wrote about us.and so much has happened. My darling Girl turned 1. Yes it seems like only yesterday to me that she was born and I held her lovingly close. Now we have a one year old moving bundle of energy. Her first Birthday Party was a good time. Her Aunties and Uncles came and played with us and she got some great gifts. I got lots of pictures and memories to write down for her. Despite the fun I had throwing her this bash and seeing everyone I am not sure I want to ever do that again. So many people in one place was overwhelming for her and Me! I am sure that when she turns 2 I may have the itch again, we shall see. After turning one and Partying for 2 days we had the fall out. She had such a terrible rash on her bottom from all the sweets that we had a miserable few days. Life went on. Her 1 year Checkup was good only a few concerns, she had lost a bit of weight, and she has an issue with dirty hands. So my pediatrician, who I love, suggested to keep an eye on things and we should come back at he rfifteen minth mark to recheck those things. Ok.
Next was Christmas. I am one who loves the Christmas season. The lights, the sounds, those wonderful tastes you only have at Chrismas. I was not a really happy Christmas celebrater this year. We did too much in a short time. With My husbands family and my Families we were overwhelmed. I was glad Christmas was over. After 4 days of eating basically junk My Darling Girl was not having anything to do with decent food. She felt she only needed to eat junk, we had to break her of that right quick. After a few days of not eating much if I was not giving her junk she was not going to eat. She finally relized I was going to win the battle and she gave in and went back to eating veggies and meat.
Next was The Illness. We had decided to have our Niece stay the night with us and have a girls night, grandma, and us. All was good. Till 4:30 in the morning. Our baby girl had a temp of 103.2, yawzaa. I was scared and it wa sjsut horrible for us. The next day we ended up in the Emergency room. They told us it would be a few hours till we could be seen so we would have to wait it out in the waiting room after we saw a triage nurse. Yup that went swimmingly. Teh evaluated and place her in a room right away. Her temp was again 103. They did the tests and i got puked on and they sent us home with her and a dignosis of RSV. Oh my goodness. For three days we watched over her and controlled the temp with acetamitifin. After 3 days we were finally fever free for a 12 hour period.
I have been dealing with Neurology for my little one since she was 2 months old. It is a common thing for us to see them, this time however, they had some new stuff for us to deal with. They diagnosed my sweet baby girl with Sensory Processing Disorder (SPD). What in the world. So now I have a name to associate with the things that my daughter is going through. I have some research to do and some learning I need to continue with. I am determined to help her no matter what. I have also come to realize my DH more than likely has the same thing as does his dad and grandpa. It is a inherited Thing. I love them all, and I know the more I can learn about this the more I can help my child and my husband to cope with life. i joke with him and I ask him if he is ready to be a sensory family, but the reality is we are going to have to become a sensory aware family. We will need to educate our families and we will need to be strong advocates for our child. My reality is mommy was busy and now mommy will be even more busy, lovingly and happily I will care for my family and we as a family will grow and learn. I look forward to it 100%.
That is where things are as of now. In the future I am sure there will be more to share.
Next was Christmas. I am one who loves the Christmas season. The lights, the sounds, those wonderful tastes you only have at Chrismas. I was not a really happy Christmas celebrater this year. We did too much in a short time. With My husbands family and my Families we were overwhelmed. I was glad Christmas was over. After 4 days of eating basically junk My Darling Girl was not having anything to do with decent food. She felt she only needed to eat junk, we had to break her of that right quick. After a few days of not eating much if I was not giving her junk she was not going to eat. She finally relized I was going to win the battle and she gave in and went back to eating veggies and meat.
Next was The Illness. We had decided to have our Niece stay the night with us and have a girls night, grandma, and us. All was good. Till 4:30 in the morning. Our baby girl had a temp of 103.2, yawzaa. I was scared and it wa sjsut horrible for us. The next day we ended up in the Emergency room. They told us it would be a few hours till we could be seen so we would have to wait it out in the waiting room after we saw a triage nurse. Yup that went swimmingly. Teh evaluated and place her in a room right away. Her temp was again 103. They did the tests and i got puked on and they sent us home with her and a dignosis of RSV. Oh my goodness. For three days we watched over her and controlled the temp with acetamitifin. After 3 days we were finally fever free for a 12 hour period.
I have been dealing with Neurology for my little one since she was 2 months old. It is a common thing for us to see them, this time however, they had some new stuff for us to deal with. They diagnosed my sweet baby girl with Sensory Processing Disorder (SPD). What in the world. So now I have a name to associate with the things that my daughter is going through. I have some research to do and some learning I need to continue with. I am determined to help her no matter what. I have also come to realize my DH more than likely has the same thing as does his dad and grandpa. It is a inherited Thing. I love them all, and I know the more I can learn about this the more I can help my child and my husband to cope with life. i joke with him and I ask him if he is ready to be a sensory family, but the reality is we are going to have to become a sensory aware family. We will need to educate our families and we will need to be strong advocates for our child. My reality is mommy was busy and now mommy will be even more busy, lovingly and happily I will care for my family and we as a family will grow and learn. I look forward to it 100%.
That is where things are as of now. In the future I am sure there will be more to share.
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