Tomorrow Calleigh will have an MRI of her brain and pituitary. She needs to have anesthesia because she would never stay still long enough for the test. (It will probably take about 2 hours or so). This will be the 6th time Calleigh will have anesthesia. It scares the crap out of me and I really wish she didn't need it. We are fortunate because three different doctors wanted an MRI and we coordinated so one MRI would cover all of them.
Calleigh's ENT wanted an MRI to take a look at her ear canals. She is still testing with mild conductive hearing loss. He wants to check out the structure of her ears. The placement of tubes in her ears could even be the cause of the mild loss. I am hoping it's the tubes. Ciaran and Cormac have sensioneural hearing loss and not conductive loss.
Calleigh's neurologist wanted a repeat MRI of her brain. She had an MRI of her brain when she was six months old. It showed she had benign hydrocephalus. Everything else was normal. Since we are still trying to get to the bottom of the balance issues her neurologist wants to take a look at her again.
Lastly, Calleigh's endocrinologist wanted to take a look at her pituitary. She is still not a growth chart for height. She is leaning towards starting growth hormone and we need to look at what is going on first.
I am hoping to get some answers about her balance and her very low tone but am not counting on it. Calleigh also needs blood work for creatine kinase. It could also give us some answers on her low tone.
Tomorrow will be a long day. The smooch can't eat anything after 8:30am. For those that know her well you know the girl likes to eat. However, in the past she has never been too bad while being deprived a meal. She can hang. She is tough. Our only request will be for milk and we will try our best to keep her busy. She doens't go into the MRI unti 2:30 in the afternoon. We only got this appointment so quickly because we were on a wait list. Our actual appointment would have been December 12th!
Keep Calleigh in your thoughts and prayers if you could.
Sunday, September 30, 2012
Tuesday, September 25, 2012
Ten on Tuesday
I seem to be neglecting my blog a little lately. You would think now with all the kids in school I would have more time but it hasn't happened yet. Calleigh isn't gone all day so it's not like a I have 8 hours a day to myself. We have had lots of big changes this year. Luckily, we have made the transition to first grade pretty smooth. The boys are still learning first grade is not Kindergarten. There are more rules to follow and serious learning going on. It has been an adjustment for them. A few bumps in the road but I am happy to report they have been three "shining stars" for the last two weeks. (They get a shining star sticker at the end of the day.) They are so proud to run out and show me their star stickers.
Ok, let's get to the Ten on Tuesday:
1. Calleigh continues to struggle with the school drop off. Today I was late (on purpose) and it went a bit better. I think I will be running late every day. Just saying....
2. Ciaran has struggled with his reading since we started trying to learn. He gets so frustrated and lacks confidence. Well, I am happy to report it has finally clicked. He is doing amazing and is no longer struggling. He is totally getting it and is right where he needs to be. His confidence is up and he loves to come home and read me his books from school.
3. Colin is fully reading. He has been reading since the Summer but he doesn't like to read to us to show us his abilities. I feel like I can breathe a sigh of relief for getting past the reading hurdle.
4. Calleigh has made huge leaps in speaking. She really talks all the time now. She still gets frustrated sometimes because I think she forgets she can talk. She is stringing 3, 4 and 5 words together. "I wear pink tutu" "I got Mommy's bed" "Where Daddy go?" "I want milk please" I a very pleased.
5. We are still waiting on the MRI for Calleigh. With three doctors asking for the MRI (ENT, Neurologist and Endocrinologist) it was tough to get all the scrips to the right place. We are waiting on insurance approval. Columbia also has a wait for an MRI. I am hoping it's not too long. I asked to be put on the cancellation list so we can go at any time. The only problem with that is Calleigh has to have anesthesia for the MRI and she can't eat before anesthesia.
6. Calleigh started private Occupational Therapy at a great center. She has gone a few times and they are working primarily on her balance issues. She is doing obstacle courses, climbing, tumbling. You name it and they are doing it. I am so pleased I found a place who truly understands her.
7. The boys teacher of the deaf is great (anyone we have had from Summit has been amazing). She sees the boys (Cormac and Ciaran) weekly. She rotates their schedule so she sees them at different times. It is working great. She was surprised at how well the boys did in gym with no FM. She couldn't believe how well they listened and were able to follow directions. She also said she got to see another side of Cormac. Normally, "he is so serious and focused in class" but on the playground "he was quite silly and giggling and playing"
8. I continue to be thrilled with our boys school. I know many people think Parochial school is not possible for their children with hearing loss. I plan on writing an entire post about it this week. I am not saying it's easy and all schools will be the same but we are having a great experience.
9. Fall has arrived. While I love fall and all things fall (apple picking, pumpkin picking, hay rides, farm trips, Halloween) it seems like someone just turned a switch and shut off Summer. And I LOVE LOVE LOVE Summer.
10. Colin has his first surf lesson. The day he went it was cold and raining and the ocean was really rough. I was thinking the instructor might tell me it was too rough for him to go in but he didn't. Colin had never been on a surf board before. He taught himself to surf on a boogey board which is totally different. The first wave he took in he rode in on his knees. The second wave he caught he stood all the way up and rode it all the way to shore! Not to shabby for a six year old. He has incredible balance and looks like a natural on the board. Of course, I missed taking video of him surfing but I took some pictures.
Here is the ocean.
Ok, let's get to the Ten on Tuesday:
1. Calleigh continues to struggle with the school drop off. Today I was late (on purpose) and it went a bit better. I think I will be running late every day. Just saying....
2. Ciaran has struggled with his reading since we started trying to learn. He gets so frustrated and lacks confidence. Well, I am happy to report it has finally clicked. He is doing amazing and is no longer struggling. He is totally getting it and is right where he needs to be. His confidence is up and he loves to come home and read me his books from school.
3. Colin is fully reading. He has been reading since the Summer but he doesn't like to read to us to show us his abilities. I feel like I can breathe a sigh of relief for getting past the reading hurdle.
4. Calleigh has made huge leaps in speaking. She really talks all the time now. She still gets frustrated sometimes because I think she forgets she can talk. She is stringing 3, 4 and 5 words together. "I wear pink tutu" "I got Mommy's bed" "Where Daddy go?" "I want milk please" I a very pleased.
5. We are still waiting on the MRI for Calleigh. With three doctors asking for the MRI (ENT, Neurologist and Endocrinologist) it was tough to get all the scrips to the right place. We are waiting on insurance approval. Columbia also has a wait for an MRI. I am hoping it's not too long. I asked to be put on the cancellation list so we can go at any time. The only problem with that is Calleigh has to have anesthesia for the MRI and she can't eat before anesthesia.
6. Calleigh started private Occupational Therapy at a great center. She has gone a few times and they are working primarily on her balance issues. She is doing obstacle courses, climbing, tumbling. You name it and they are doing it. I am so pleased I found a place who truly understands her.
7. The boys teacher of the deaf is great (anyone we have had from Summit has been amazing). She sees the boys (Cormac and Ciaran) weekly. She rotates their schedule so she sees them at different times. It is working great. She was surprised at how well the boys did in gym with no FM. She couldn't believe how well they listened and were able to follow directions. She also said she got to see another side of Cormac. Normally, "he is so serious and focused in class" but on the playground "he was quite silly and giggling and playing"
8. I continue to be thrilled with our boys school. I know many people think Parochial school is not possible for their children with hearing loss. I plan on writing an entire post about it this week. I am not saying it's easy and all schools will be the same but we are having a great experience.
9. Fall has arrived. While I love fall and all things fall (apple picking, pumpkin picking, hay rides, farm trips, Halloween) it seems like someone just turned a switch and shut off Summer. And I LOVE LOVE LOVE Summer.
10. Colin has his first surf lesson. The day he went it was cold and raining and the ocean was really rough. I was thinking the instructor might tell me it was too rough for him to go in but he didn't. Colin had never been on a surf board before. He taught himself to surf on a boogey board which is totally different. The first wave he took in he rode in on his knees. The second wave he caught he stood all the way up and rode it all the way to shore! Not to shabby for a six year old. He has incredible balance and looks like a natural on the board. Of course, I missed taking video of him surfing but I took some pictures.
Here is the ocean.
Sunday, September 16, 2012
Sitting on the dock of the bay...
It was the most beautiful afternoon. The sun was shining. The sky was so perfect. We tossed out some lines and the crabs started biting. Lots of them were too small to keep but I caught a pretty big one. We wound up only catching three big enough to keep so they got a reprieve and we through them back.
It was the first time my kids had ever gone crabbing. They loved it! We will be crabbing again for sure. Considering we can just go down the block from our house and crab anywhere we will have to get some crabbing supplies.
Crabbing cousins....better than crabby cousins, right??
Everyone waiting to see if the first line got a crab on it.
Just to make sure I have it on record. Here are some recent funny quotes from the kids.
I was sitting in the truck with Colin, Cormac, Calleigh and my niece Devon. Frank went into the Shoprite to pick up two things. He was taking forever so I said to my niece "what is taking Uncle Frank so long?" Before she could answer Colin says "maybe he asked someone to shave his back and his armpits". Devon nearly fell off her seat laughing. I have no idea what possessed him to say that. It came out of nowhere. And really, what was he thinking??? Frank isn't even hairy! And why was that his immediate answer?? I am still laughing so hard I am crying just thinking about it.
Cormac: Only one more sleep until A FULL DAY of school. I can't wait I am so excited. Colin: I am pretty sure I am going to totally love first grade. Ciaran: All we do at school is work, work, work. Yep, that pretty much somes up their personalities!
Calleigh has a few perfect sentences :"Where is the hot dog man? and I want the IPOD please" She has her priorities straight...
Monday, September 10, 2012
When you thought I wasn't looking....
This was posted on our school's website by one of the teachers. I thought it was worth sharing.....
WHEN YOU THOUGHT I WASN'T LOOKING. A message every adult should read because children are watching you and doing as you do, not as you say.
When you thought I wasn't looking I saw you hang my first painting on the refrigerator, and I immediately wanted to paint another one.
When you thought I wasn't looking I saw you feed a stray cat, and I learned that it was good to be kind to animals.
When you thought I wasn't looking I saw you make my favorite cake for me, and I learned that the little things can be the special things in life.
When you thought I wasn't looking I heard you say a prayer, and I knew that there is a higher power I could always talk to, and I learned to trust in those thoughts.
When you thought I wasn't looking I saw you make a meal and take it to a friend who was sick, and I learned that we all have to help take care of each other.
When you thought I wasn't looking, I saw you give of your time and money to help people who had nothing, and I learned that those who have something should give to those who don't.
When you thought I wasn't looking I saw you take care of our house and everyone in it, and I learned we have to take care of what we are given.
When you thought I wasn't looking I saw how you handled your responsibilities, even when you didn't feel good, and I learned that I would have to be responsible when I grow up.
When you thought I wasn't looking I saw tears come from your eyes, and I learned that sometimes things hurt, but it's all right to cry
When you thought I wasn't looking I saw that you cared, and I wanted to be everything that I could be.
When you thought I wasn't looking I learned most of life's lessons that I need to know to be a good and productive person when I grow up.
When you thought I wasn't looking I looked at you and wanted to say, 'Thanks for all the things I saw when you thought I wasn't looking.'
WHEN YOU THOUGHT I WASN'T LOOKING. A message every adult should read because children are watching you and doing as you do, not as you say.
When you thought I wasn't looking I saw you hang my first painting on the refrigerator, and I immediately wanted to paint another one.
When you thought I wasn't looking I saw you feed a stray cat, and I learned that it was good to be kind to animals.
When you thought I wasn't looking I saw you make my favorite cake for me, and I learned that the little things can be the special things in life.
When you thought I wasn't looking I heard you say a prayer, and I knew that there is a higher power I could always talk to, and I learned to trust in those thoughts.
When you thought I wasn't looking I saw you make a meal and take it to a friend who was sick, and I learned that we all have to help take care of each other.
When you thought I wasn't looking, I saw you give of your time and money to help people who had nothing, and I learned that those who have something should give to those who don't.
When you thought I wasn't looking I saw you take care of our house and everyone in it, and I learned we have to take care of what we are given.
When you thought I wasn't looking I saw how you handled your responsibilities, even when you didn't feel good, and I learned that I would have to be responsible when I grow up.
When you thought I wasn't looking I saw tears come from your eyes, and I learned that sometimes things hurt, but it's all right to cry
When you thought I wasn't looking I saw that you cared, and I wanted to be everything that I could be.
When you thought I wasn't looking I learned most of life's lessons that I need to know to be a good and productive person when I grow up.
When you thought I wasn't looking I looked at you and wanted to say, 'Thanks for all the things I saw when you thought I wasn't looking.'
Friday, September 7, 2012
Pre K 3
Calleigh started Pre K 3 on Thursday. She starts school at 8:10 am which is exactly the same time the boys start. Logistically it's a little difficult because you can't be in two places at the same time, right?? Getting four kids up, fed, cleaned up and all the rest by 7:50 can be challenging but it's been alright. I drop the boys off at 8:00 and they line up for school. I then hightail it over to Calleigh's school and just barely make it there by 8:10.
Her first day she was completely overwhelmed when we walked up and to the school. There were a lot of families all waiting to go inside for the big first day. Calleigh gets a little overwhelmed with lots of people and noise. Normally, she does not want to be held. She likes to walk but she immediately said "Mommy, hold you" (which means "hold me"). The aide for her classroom said I should walk in with her so she wouldn't get too upset on her first day. I walked in with her and was telling he she was going to her classroom. It is the same room she was in for the Summer but she had a different teacher. When we got to her room she said "my cwassroom". She went right to her seat and got in. All smiles at that point. I took that as my cue to leave.
Day two was a success too. She walked in on her own without me going in with her. One of the other kids came up and gave her a hug before they went in. So adorable. She had a great day again. Her teacher said "she has her own little ideas and the cutest personality". I love how she has an aide with her at all times. It reassures me she won't get hurt or fall down and someone is keeping an extra close eye on her.
I miss her...alot but I know she is where she needs to be. She will do so well. The program she is in is a great program. She was so tired the last two days when she was done she could barely walk!
All in all a great start to the school year for all the kiddos! I am so thrilled they are all happy. It makes sending them to school so much easier.
Her first day she was completely overwhelmed when we walked up and to the school. There were a lot of families all waiting to go inside for the big first day. Calleigh gets a little overwhelmed with lots of people and noise. Normally, she does not want to be held. She likes to walk but she immediately said "Mommy, hold you" (which means "hold me"). The aide for her classroom said I should walk in with her so she wouldn't get too upset on her first day. I walked in with her and was telling he she was going to her classroom. It is the same room she was in for the Summer but she had a different teacher. When we got to her room she said "my cwassroom". She went right to her seat and got in. All smiles at that point. I took that as my cue to leave.
According to her teacher she had a wonderful day. She was happy and smiling. When I went to get she ran out and tackled me. She was yelling "Hi, Mommy" and hugging and kissing me. I couldn't stand how cute she was at that moment.
She is in an integrated class of 10 kids. She is the youngest and the smallest in the class. And when I say the smallest it's by ALOT. I was sort of freaked out about how much bigger the other kids were but Calleigh is a tough chick. She can handle herself pretty well.
Here are some pictures of her before she left for the day.
Day two was a success too. She walked in on her own without me going in with her. One of the other kids came up and gave her a hug before they went in. So adorable. She had a great day again. Her teacher said "she has her own little ideas and the cutest personality". I love how she has an aide with her at all times. It reassures me she won't get hurt or fall down and someone is keeping an extra close eye on her.
I miss her...alot but I know she is where she needs to be. She will do so well. The program she is in is a great program. She was so tired the last two days when she was done she could barely walk!
All in all a great start to the school year for all the kiddos! I am so thrilled they are all happy. It makes sending them to school so much easier.
Thursday, September 6, 2012
1st Grade
Not sure when it happened or how it happened but my babies started 1st grade on Wednesday! It seems like yesterday I was bringing them home from the hospital. The phrase "the days are long but the years short" is so true.
The boys were all pretty excited to go to school. We had a meet and greet on Tuesday. It was basically just to meet the teacher and let them see their classroom. I took this opportunity to show their new teacher the FM system. This is her first experience with the FM. I also prepared binders for both Cormac and Ciaran. They had information on their hearing history along with tips on teaching a child with hearing loss.
At the meet and greet we were able to see the boys' classroom for the first time. They loved finding their seats and seeing who would be next to them. The boys are all in the same class but they don't sit anywhere near each other. I also love how the desks are set up. They are in a square letter "C". Does that make sense? Well, it works awesome for the boys. They can see everyone in the class when they are speaking.
The night before there first full day here is what they had to say:
Cormac: Only one more sleep until A FULL DAY of school. I can't wait I am so excited.
Colin: I am pretty sure I am going to totally love first grade.
Ciaran: All we do at school is work, work, work.
The next day was the first "official" day of school. I was a little nervous about getting the boys up and out by 8am since we haven't done that all Summer. The morning went really well. I made a list for the mornings to make things go easier. Everyone knows what they need to do before we leave. (Eat breakfast, clear dishes, get hearing aids, get FM hooks etc) This seems to be working for us.
We were out the door and off after a few pictures. They were very excited to see their friends. They were hugging lots of people. The boys will continue to be in the same class this year. Their seats are not near each other. For now, this works for all of us.
When I went to pick them up later here is what they had to say:
Ciaran: I loved it so much I don't want to leave.
Colin: I thought Kindergarten was fun but first grade is even more fun
Cormac: It was the best day ever. I love school.
Sounds like a big success to me.
Their teacher used the FM all day with no issues. They handed it off to the computer teacher with no issues. The boys said it was up and running perfect all day. Huge relief. Their teacher of the deaf was changed this year. Their new teacher is someone from Summit Speech school and she actually worked with Cormac when he was three years old and attended the school there for 8 weeks after he aged out of early intervention. We are so lucky to have her again. She has already been to the school and spoke with their teacher, has their schedules and is setting the date for the inservice. I am so thrilled everything is set up and running so smoothly.
A few of the highlights for the boys"
1. They each have a own locker in the hallway. (they share with two other kids)
2. They no longer eat lunch in their classroom. They walk to the cafeteria and eat.
3. They love sitting in desks and not at tables.
4. Colin loves he is "surrounded by girls". (He has a girl on either side of him)
5. Ciaran was so excited because his good friend has the same new shoes as him.
Lots of mixed emotions about them being in 1st grade. Honestly, their excitement and energy for school just makes me happy. Going to pick them up and the reaction I get is priceless. I know it won't last forever but man, do I love those running hugs/tackles they do.
Seeing them on the playground with their friends all just running and playing you forget it was no easy journey to get there. That is the thing...you actually forget for a few moments. You realize your kids are just like the other kids
Today when I went to pick them up their enthusiasm was still the same. They had a great second day. One of the other mothers from the class was in the class the first two mornings assisting the teacher. She told me this afternoon "the boys are so good in class." They listen to the teacher, they are very quiet and just so well behaved. I asked few questions and she said "no, really, they are just so so good and you have nothing to worry about" It completely made my day. I know the transition from Kindergarten to first grade can be difficult. Kindergarten is much more laid back. In first grade they don't mess around. I also purposely put them in the class with her very structured and organized teacher who is just great.
Calleigh started school today. I can't post about it tonight but I will. I think she deserves her own post for such a big milestone :)
Here are some pictures. They are looking so grown up and while I love seeing them flourish I can't seem to feel a little sad how quickly it goes by.
Ciaran
Colin
Cormac
The boys were all pretty excited to go to school. We had a meet and greet on Tuesday. It was basically just to meet the teacher and let them see their classroom. I took this opportunity to show their new teacher the FM system. This is her first experience with the FM. I also prepared binders for both Cormac and Ciaran. They had information on their hearing history along with tips on teaching a child with hearing loss.
At the meet and greet we were able to see the boys' classroom for the first time. They loved finding their seats and seeing who would be next to them. The boys are all in the same class but they don't sit anywhere near each other. I also love how the desks are set up. They are in a square letter "C". Does that make sense? Well, it works awesome for the boys. They can see everyone in the class when they are speaking.
The night before there first full day here is what they had to say:
Cormac: Only one more sleep until A FULL DAY of school. I can't wait I am so excited.
Colin: I am pretty sure I am going to totally love first grade.
Ciaran: All we do at school is work, work, work.
The next day was the first "official" day of school. I was a little nervous about getting the boys up and out by 8am since we haven't done that all Summer. The morning went really well. I made a list for the mornings to make things go easier. Everyone knows what they need to do before we leave. (Eat breakfast, clear dishes, get hearing aids, get FM hooks etc) This seems to be working for us.
We were out the door and off after a few pictures. They were very excited to see their friends. They were hugging lots of people. The boys will continue to be in the same class this year. Their seats are not near each other. For now, this works for all of us.
When I went to pick them up later here is what they had to say:
Ciaran: I loved it so much I don't want to leave.
Colin: I thought Kindergarten was fun but first grade is even more fun
Cormac: It was the best day ever. I love school.
Sounds like a big success to me.
Their teacher used the FM all day with no issues. They handed it off to the computer teacher with no issues. The boys said it was up and running perfect all day. Huge relief. Their teacher of the deaf was changed this year. Their new teacher is someone from Summit Speech school and she actually worked with Cormac when he was three years old and attended the school there for 8 weeks after he aged out of early intervention. We are so lucky to have her again. She has already been to the school and spoke with their teacher, has their schedules and is setting the date for the inservice. I am so thrilled everything is set up and running so smoothly.
A few of the highlights for the boys"
1. They each have a own locker in the hallway. (they share with two other kids)
2. They no longer eat lunch in their classroom. They walk to the cafeteria and eat.
3. They love sitting in desks and not at tables.
4. Colin loves he is "surrounded by girls". (He has a girl on either side of him)
5. Ciaran was so excited because his good friend has the same new shoes as him.
Lots of mixed emotions about them being in 1st grade. Honestly, their excitement and energy for school just makes me happy. Going to pick them up and the reaction I get is priceless. I know it won't last forever but man, do I love those running hugs/tackles they do.
Seeing them on the playground with their friends all just running and playing you forget it was no easy journey to get there. That is the thing...you actually forget for a few moments. You realize your kids are just like the other kids
Today when I went to pick them up their enthusiasm was still the same. They had a great second day. One of the other mothers from the class was in the class the first two mornings assisting the teacher. She told me this afternoon "the boys are so good in class." They listen to the teacher, they are very quiet and just so well behaved. I asked few questions and she said "no, really, they are just so so good and you have nothing to worry about" It completely made my day. I know the transition from Kindergarten to first grade can be difficult. Kindergarten is much more laid back. In first grade they don't mess around. I also purposely put them in the class with her very structured and organized teacher who is just great.
Calleigh started school today. I can't post about it tonight but I will. I think she deserves her own post for such a big milestone :)
Here are some pictures. They are looking so grown up and while I love seeing them flourish I can't seem to feel a little sad how quickly it goes by.
Ciaran
Here they are from a year ago on their first day of Kindergarten! Ciaran looks the most different to me.
Monday, September 3, 2012
Kite Flying
My sister, Robin, gave the kids a kite for their birthday. Can you imagine we never used it until today?? I am not sure why we kept forgetting to play with it. The boys asked a million times but it seemed like they always asked after we were up at the beach and we didn't get to it.
Today we woke up to a not so great beach day but a amazing kite flying day. We walked up to the beach and let it fly.....
He was so excited!
It's a Space Shuttle kite.
Ciaran flying the kite
Colin loved it too!
Me and the Princess
Calleigh was loving it!
And of course so time to goof around!
Today we woke up to a not so great beach day but a amazing kite flying day. We walked up to the beach and let it fly.....
He was so excited!
It's a Space Shuttle kite.
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