Vacation must have been WAY too fun.

Our kids are having a hard time getting back into the school routine. It was rough going, but we made it through the day. (I think, we still have 2.5 more hours of the day)

Highlights of the day.

Sam going to school. lol.

I am slowly getting more organized. All the piles in the kitchen are gone. An organized system of piles in bins. My trip to Ikea proved successful in the getting more organized front. I love that place!

Sam saying, "I don't say the S or L words." (Sexy or Love) I had just told Kailyn not to sing the song "I'm Sexy and I Know It". He tries to one up her when I correct her behavior by saying he does not do it. The song is on the TV all the time and I guess the kids at her school sing it. Sam heard it on the TV this am (the Today Show was on in the background while we were getting ready for school and the beginning of the song was played) He sang, "I'm the S word and I know it". LOL  I told him he can say love, but for some reason he thinks that he can't. He also does not think he can look at people kissing. He hates when people tease him about liking a girl even though he chases them at recess on the playground.

Keira stinking her tongue out at me. When you ask her where her mouth is she goes, "aah" and sticks out her tongue with a smile. She has an infectious giggle when you tickle her afterwards.

Kailyn asking me not to transport her after she falls asleep. I let her go to bed in ours so that she would fall asleep early. I could not understand what she meant? Did she not want me to press a Star Trek like button and transport her somewhere? Then my tired brain started to think harder. She meant transfer her back into her bed. Well, we will. lol

Keira officially starting her ABA in home program. They were doing baselines for almost a month. Now the real work starts. She anxiously awaits either Mark or Brendan at the door once the dog starts barking. She even cried the other day when Mark left.

Highlights of the week.

My kids going to art class for four days. They loved it and made a pretty cool masterpiece using melted crayons.

Playdates. Kailyn had a few and we had one with their cousins. They seemed to have a blast.

Kailyn whispering to me in Boston that she knew the secret of what LMFAO was.
Laugh my fat a$$ off or Laugh my freaking a$$ off.  I wonder how long she has pondered what those letters meant and if she really knows what the F is? lol  If she does, she is really good at hiding it.  If someone has told her it was not us and she has not heard it in our presence. I told her to keep it a secret and not to tell anyone else. lol   It is impossible to hide my children from pop culture. Kailyn takes hip hop classes and it is around them all the time. Especially her.

My nephew asking me if Sam, "Customizes his Beyblades". He turned four in December.

Watching Keira learn how to use the Ipad. She is really good at her shape sorting game. It really impresses her teachers. She can barely talk, but can push and move complicated pieces into their right places.

Finishing up our paperwork for the Autism study.

Going to the Boston Museum of Science as a family. My kids favorite exhibits were the dinosaurs and the human body section. They could not get over looking at the real brains.

Going to Ikea (This is much more fun without kids though ;) )

Kailyn getting her bunny. It's annoying sometimes, but she loves Holly to pieces.

Being healthy over a vacation. The last one was a bust. We literally NEVER left the house. It was nice to be able to do things over the vacation.

The Never Ending Autism Study. But, it is all good!!

Here is the info on what we did via the NESCA website



Children's Hospital Boston Research on Autism Spectrum Disorders

Children's Hospital Boston has asked our help in recruiting families to participate in their ongoing research study of possible genetic and environmental factors in the causation of autism spectrum disorders (ASD).

Participation will ordinarily require two hospital visits, the first generally lasting 4 - 5 hours and the second, about two hours, although these are estimates. Families may also choose to complete their involvement in a single, full-day appointment, from 9:00am - 4:00pm. Children's Hospital will validate parking for all participants, and families opting for the full day will also receive cafeteria meal vouchers.

Here's their information:

Autism Spectrum Disorder (ASD)
Study at Children’s Hospital Boston

· Who we are

We are a group of doctors and researchers from the Developmental Medicine Center, the Division of Genetics, the Department of Neurology, and the Program in Genomics at Children’s Hospital Boston.

· What we study and its importance

We are studying ASD and related disorders in order to better understand why they occur, increase our ability for early identification, and find improved treatments and an eventual cure. Specifically, we collect information on children aged 18 months and up who are diagnosed with ASD and their families.

· Your involvement

Participation in this study involves two research visits at Children’s Hospital Boston. We interview all immediate family members, including the individual diagnosed with ASD. The data we collect includes general facts about developmental history, family history, and environmental information. We also collect genetic material from a blood or saliva sample in order to look for possible gene changes that may be related to ASD.

Shortly after the visits, families receive a research report of our observations that includes developmental, cognitive, behavioral and social findings.

If you are interested in participating or would like more information, please contact us at 1-866-982-5826 (toll-free) or 617-355-9152. You can also email us at ASDResearch@childrens.harvard.edu.

We were also sent home with homework and $120 worth of American Express gift cheques. $40 per kid.


And a little homework. These envelopes were stuffed full of info on all five of us. Asking questions on behavior and communication over and over again in different ways. Making sure we answered the question the same way every time.  This took about 2 hours.

I also got a one hour follow up call this week filling in any questions that were unanswered and agreed to do a 2 hour over the phone interview/ research study to help them come up with a form to better identify children with autism at regular pediatricians visits.

I have a feeling I will be asked to do more.  But, the more we can do as a family, the further I hope we can get the information we need to help identify and find treatments or cures for Autism.

Plus they have to tell us anything they find in our gene pool that is treatable. This is for our entire lives. We gave them permission to use our blood for any research studies they would like. We can either decide to participate in interviews/paperwork (or not) that are associated with new studies.


This was well worth it for our family in more ways than one and probably will not end for a long time.

Pure Joy is getting a bunny!

You have wanted for 3 years.

She started in on me when I was pregnant.

She was 7. I told her 10 years old.

I never thought she would turn 10. (In a month and a half)

She was told she would be responsible for her rabbit entirely.

I am not a huge animal lover, but my kids are.

She earned all the money to get the supplies and the rabbit.

The nice rabbit man gave her one of the gentlest bunnies he had.(Did not make her pay)

(I have no idea what kind. Just that it will be as big as my Mom's

dog Daisy. 8 pounds)

The bunny will stay inside until it gets warmer and then will stay in

a hutch out in our garage next to the heated side of the wall. She is too

young to be outside yet.

So: Introducing

Holly

The newest member of our family.

And her Mom:Kailyn

 Apparently, they were worried she would get lonely so they fell asleep in the Playroom. Sam did not find his accommodations very comfortable for long and woke up to move to the couch. The new unfinished playroom chairs just did not cut it. I then whisked him upstairs into his own bed. I then went and dragged Kailyn up to her room. Holly is in the cage with the blue blanket over it and a little opening.

Here's to hoping they calm down about the rabbit before vacation is over. ;)

A Big Thank You to Grammie and Grandpa for helping her research and taking her shopping for the supplies: I think ;)

Good Moms have sticky floors. A little of everything.

Sam    

     I really LOVE how Sam says some things the wrong way or labels objects incorrectly. Yeah, I probably should always correct, but once he gets it in his head it is hard to retrain him. For instance, he keeps calling R2D2, Wall-E. He won't back down. He calls Kailyn, "Kaiyn" and his reading teacher, "The work lady". He has a hard time remembering names. So, I try, but figure at some point he will get it. Until then, I will sit back and quietly chuckle. Also, note to self: I can't do first grade homework. I tried to help him last night and we got a horrible grade!! Here is a picture of my cutie when he was two! He was such a monkey and always climbing. Just like Keira now.

Someone was talking to Keira about getting a haircut.

1. She had no idea what they are talking about.

2. Why in the heck would I get her a haircut? They acted all shocked she has never had her hair cut. Why would I?

She is totally posing in this photo ;)

Here is a picture of my Dad holding Keira right after she was born. I am putting it here so I can find it for her ABA people identification program. I actually really love it though. It's perfection in my opinion.

My philosophy in life has changed a bit in the last few years. I used to sweat the small stuff. Then I was stuck. I did not know where to go. I could not live the life that I expected. This picture sum's up how I felt. I find this picture amusing! I have found my way if you were wondering ;)

This is my new philosophy after Autism, Type 1 Diabetes, Epilepsy, G-tube feeding and a blood clotting disorder  (that resulted in two pulmonary embolism's) entered my life. Yup, my house is way messier than I ever expected, but I don't care. It's clean, just messy a ton.

And just so a pretty picture of Kailyn is not left out: At camp last summer almost 3 years after her Type 1 Diabetes diagnosis.

On a Valentines Note

     I am pretty proud of my skills of putting together a duck taped tissue box for Valentines this am.-Ha ha. I did it in 3 minutes flat. I forgot that Kailyn's class was having her Valentines party a day earlier than the actual day. We remembered right before bed the night before. Seth went out to get the last minute supplies in the am and just happened to pick up the good kind of napkins that Kailyn volunteered to bring in. They came in an almost tissue box shaped box. I took the napkins out, used her HOT pink duck tape, wrapped the whole thing in it and decorated it with hearts, peace signs, and words of happiness using a sharpie. When she saw it she said, "Cool". She also proclaimed that her box was a lot cooler than other kids. It's the little things that make your kids really happy sometimes and for you in return as well.

    I was also able to get Keira her work space for ABA (Applied Behavioral Analysis) today.  I looked and looked online, but I could not find anything made of real wood. We have already had the fake wood type of tables and they lasted a whole year. This one is made of solid pine.  We got it at the Mill Store. It's unfinished "real" wood. Now I need to stain and paint it. I also have to convince Kailyn that her chair is not going to be Hot Pink. Maybe a Red close to Hot Pink? Sam of course wants his chair to be blue and Keira's captain chair is to be determined. The captain chair was purchased on purpose to help keep her on the chair. She gets wobbly on chairs without sides.  I do plan to stencil their names on them. ;)

My accomplishments of the day. Now for that laundry pile ;)

Autism, Epilepsy and Type 1 Diabetes Blaaahhhh

     Sometimes Type 1 Diabetes gets in the way of Autism and Autism gets in the way of Type 1 Diabetes. Today, Epilepsy took center stage. I try to keep things in little buckets and only think about one thing at a time, but occasionally that does not work.
 
     Like today. Keira had a Neurologists appointment at 10:30 and Kailyn had a Diabetes Appointment at 11:30. Then, Keira has her ABA teacher come to the house every day at 12 noon.  I had to choose and Autism/Epilepsy won by default.  Kailyn has NEVER needed a referral to the Endocrinologist nor have we had to pay a copay, but apparently we now do. I learned this when I opened a bill from her last visit on Saturday. Maybe too many children with Type 1 Diabetes are going to the Doctor so they can get their medicine and supplies to LIVE.  So, they decided to crack down on that. I mean really, a documented Type 1 Diabetic NEEDS a referral to get info on how to live and prescriptions to keep her alive? SERIOUSLY?

     The Neurologist appointment was normal. We talked about her seizures, looked at a recent video I took and talked about medication to keep the seizure monsters out of her brain.  Then came the news that her genetic deletion has now been linked to Epilepsy. She is no longer considered a Child with Benign Epilepsy. Now, she is considered to have Early Onset Epilepsy. All because of this gene mutation. I have to admit, I am taking it hard. Benign means she would outgrow it. Early onset means it is with her for life. I can't find much info on it either, which is frustrating.

     However, I am trying to take it with a grain of salt knowing that the research on the deletion is in its early stages.  And frankly, Doctors DO NOT know everything. It is a science. If they knew everything they would be able to tell us what the heck was going on! In my opinion, she has a form of Developmental Delay/Epilepsy that does not have a name yet. We go to Children's Hospital Boston in April (I have had this appointment since December) for a second opinion from an Epileptimologist that specializes in child development. They are ranked #1 in the nation. She may say the same thing, she may not. But, at least we are doing all we can to help our child meet her fullest potential in life.

Boston Trip: Children's Hospital Boston Research, Raincoat Cafe and Build a Bear.

We got up at 5am in hopes of leaving by 6am. We left at 6:10. We were going to Children's Hospital Boston to participate in a comprehensive study on Autism. Having two children on the spectrum and Keira with a special gene deletion associated with Autism made them especially interested in us. I swear the genetic researcher was bouncing up and down in her seat when I mentioned the deletion even though she already knew about it before we got there.

      A team of researchers from the Developmental Medicine Center greeted us on the 6th floor. Some Geneticists, a Psychologist, a Neurologist and a bunch of Post Docs were there to greet us. I think there were around eight of them. We checked in and they whisked us off to sign consent forms. After we got through all the paperwork we were all brought to separate rooms to be tested and interviewed for 3.5 hours. Everyone was fine with this part except Sam. At this point, I think he wished he had gone to school instead.  :) We got through the morning and then went down to the seriously busy cafeteria with vouchers in hand and a wide array of things to select from. One of Kailyn's favorite things about Hospitals is cafeterias. This one did not disappoint.

     Afterwards, we went back upstairs and they did a few more things with the kids while I was interviewed for another 3 hours. While I finished up interviewing, they took every one's blood except for Sam. We were waiting to do him last and did not tell him until the last minute because he would freak out. He did. He did not want what he called "a point" put in him even though they gave them numbing cream. We had to pin him down, but once he figured out it did not hurt he relaxed and watched the TV until his three vials were drawn. It was funny listening to them in the car talk about the blood draw. Kailyn swore that she had 5 vials taken and Sam said he had 4. Everyone in the family had three. I talked about both Sam and Keira for 6 hours yesterday. My face was bright red by the end of the day and my brain was fried. I still have a ton of homework to do that they sent home with me and more interviewing to do over the phone. They usually do the research in two trips, but since we were coming from so far we did it in one.

 This is them playing and being entertained while we waited for blood draws and for me to finish up interviewing.

 The Musical Stairs were a huge hit on our way out. We have been here a couple times and I never noticed this before.

Then off to Burlington and the Rainforest Cafe for a reward. (Or Raincoat Cafe as Kailyn enthusiastically shouted out to the researchers when we first got there) They were very good research participants. It was a long day of cognitive tests etc...and they did wonderful. Even Sam, who I hope won't be completely scarred for life about hospitals.

 In front of the fish tanks and rain.

 Sam and Keira both touching the rain. They inspected every inch of the restaurant and we survived two thunderstorms while we were there. There was a ginormous gorilla right next to our table. I thought it would freak Keira out, but no. Sam was the one that was scared and had to be convinced that it was not real. Kailyn wanted to get up and touch all of the animals.

 Type 1 Diabetes nightmare.

 Volcano cake for dessert. HUGE and thrilling for the kids. Never have had anything like it. Although, it could easily be recreated for a birthday party. ;) Keira loved playing with the top of it.

Then we went to the Lego Store and Build A Bear to get the rest of their rewards. All of them got bears. This was Keira's first bear and I named her Dreamy. She can't name things herself at this point. So, I named her this. I have big dreams and aspirations for Keira.

 The Bear Helper really made them work to put their hearts into their bears.Then, we finally left the mall. We basically closed it at 9pm. We headed home and they passed out on the way. First, Keira about 15 minutes after we got on the highway with Dreamy.

 Then Kailyn with Diabetes Bear and Candy.

 And finally Sam at 10pm, who usually goes to bed around 7:30, with Beary and Armyman Bear.

New and old Bears to cuddle with.

Keira woke up early, but Sam and Kailyn are still fast asleep. I will bring them to school when they wake up.(If they ever do) 

     Hopefully, we were helpful and will continue to be helpful in research for years to come. They will store our blood/DNA for years too and study it as needed. Our names are not on it. Just a number. However, if something major should ever come up they will track our names down and let us know. This also will help save us money on testing they wanted to do on Keira as well.

What Club do you want to join Sam?

I was asking Sam what after school clubs he would like to try and join. I said, "Would you like to do Beading Club?" His response, "Is that sort of like wrestling?" I had to think for a second and started to chuckle while I asked what he meant. His response, "You know, like how people wrestle and bead (beat) on other peoples!"

It's Feeding Tube Awareness Week and I Love a Tubie!!

     Just about every disability or illness has a week, a day or a month now and feeding via G-tube is not excluded. I Love A Tubie is the slogan for the online support group for people with children with G-tubes. Without these tubes people like my little Keira would not be alive. I am so happy I live during a day of modern technology. Looking from the outside you would never know that Keira is fed via G-tube. She gets 24 ozs of pedisure a day. She also eats and drinks regular food. We have tried to wean her twice, but this last time seizures started again .I can't remember why it did not work out the first time? Sometimes the details get lost in my brain.  She got a G-tube when she was diagnosed with failure to thrive due to having seizures every time she ate. She would drink her bottle as fast as she could to get enough nutrition to keep herself alive. So here is a montage they put together showing different families living with G-tubes.

 

And here is my little Tubie Right After getting the G-Tube in Oct of 2011

Nov of 2012

Make a video - it's fun, easy and free!
www.onetruemedia.com

Oh and He Feels Better

     Hopefully it was indeed a sinus infection. He was still dragging today, but NOTHING like Thursday.  I was convinced that the family was doomed with a stomach flu bug, but no one else has gotten that sick, yet. (Thank God) I'm not sure how long it takes, but from talking to other families it has been within a day and it has been 3. Type 1 Diabetes and a stomach illness are very frightening and something I wish to avoid at all costs.

PS: the blue duck tape provides hours of useless fun of taping things together and comes off very easily. :)

Cheering on the Pats for The Super Bowl and the Tween Woes

     Actually, I was not very interested. I went up to bed to take a nap and Seth yelled up to me that I was missing it. I came down to see that they were behind. Nothing can compare to my first Super Bowl experience. I was 10, in fifth grade and the Patriots played against the Bears. They got slaughtered and I came down with a horrible fever and illness that evening. I was SOOO excited for that game and they lost. The Super Bowl Shuffle jingle still sticks in my head. So annoying. One of the reasons I am not so into it is that they have been in 4 and won 2 in the last few years. I have this weird belief that everyone should have a chance. So, NY Giants need to let someone else win now. lol
     My kids were a little bit into it. They decorated their faces with my eyeliner. (when I was sleeping) Sam with the classic football black stripes under his eyes. Kailyn with Brady's numbers on her face.  Keira ran around naked, singing her gibberish, while looking at her reflection in the back slider doors.  Dad forgot that he was getting her ready for bed mid changing because he lost focus and started to look at the screen again.  The kids went to bed right after the half time show. Seth could not look at the end. Par for course for him.
     Kailyn went to her second sleepover with just one friend and it was a success. She had a blast. I am SO happy for her in this regard. She now does everything that a normal almost 10 year old does. Her path in life seems to be leaning towards the arts. She loves Ballet, Hip Hop, Tumbling, Cheerleading, Band and anything to do with Art. She also wants to take up chorus again. Her and her friend did all the girly stuff girls that age do and Kailyn reeked of perfume. They joined Sam and his friend to ice skate later in the afternoon. She came home with a ton of posters of popular singers and actors that she plastered all over her walls. I had to go in and negotiate taking half of them down and discuss which ones were the best roll models. This tween thing is hard. I want to shelter her because she is still very young, but I also don't want her to be the odd little girl/big girl out. She already has Type 1 Diabetes to set her apart.
     Everything I did as a kid happens 2 years earlier for girls now.  Sleepovers, boys, clothing, wanting magazines of the cool actors and singers. However, I refuse to let her do things until I feel it is appropriate for her. If a film is PG 13 she is not watching it. She has the ability to read a ton of the young adult novels, including Twilight. I was shocked to not only learn that girls her age were reading it, but that they watched the movies. Nope, not until she is thirteen and in the presence of me. (I hope she does not want to by then though, I can't stand vampires ;) ) There are plenty of novels out there that she can get into that does not envelope her in Vampires and romance. They are starting a book club in our town tomorrow for 4th and 5th grade girls. So, after band, she is heading to the library to get some new age appropriate reading material. Hopefully, it will be fun and challenging. It's going to be hard to be the mean Mom that does not let her go to just any one's house. Hopefully, she will appreciate it when she is my age and does not have a 21 year old because she ended up being one of those girls on the MTV show 16 and pregnant.

Kailyn Is Getting a New Bunny

Yes, we love to create chaos in our life ;) This is her water color of what she looks like. When she was 7 and I was pregnant with Keira, she begged and begged us about getting a rabbit. I finally let her know it was not going to happen then(way too much going on),but when she was 10, she could definitely get one. At that point, I never imagined she would become a 10 year old big girl. Well, her 10th birthday is coming up and she has been researching with her grandfather what kind of rabbit to get and how to take care of her. She will stay in the playroom until it gets warm and then will move out to a hutch in the garage. She has her picked out and the date is set on our calender for when she gets to go and get her. Now.........we need to come up with a plan to make sure the kids know NOT to let the dog or bunny near each other so the bunny does not get eaten.

ABA therapy and Gigantic+Enormous= Ginormous

     Another day for the books and it is not over yet.  It started out with a certain 7 year old climbing into our bed moaning at 4am. I touched his forehead to see if he was hot. Very warm. I had stayed up until 1am finishing up our taxes, so I fell back to sleep knowing he would not be going to school today.  I was wondering about a sinus infection for a few days and figured that it had finally reared its ugly head.  I managed to get a shower in before getting the 2 year old out of the bed and Sam was STILL sleeping and groaning. Totally not normal for him. Even when he is sick, he usually still functions. It has to be something big to get him down. (Later on that am he vomited.) Kailyn had uncharacteristically gone downstairs, tested and asked me to get her some clothing. She usually needs to be prodded out of bed. The night before she had me convinced she was going to be staying home from school today. (Blood Sugars went over 600 and did not register on her testing kit, but we got that under control overnight. A big whole different story) But no, she woke up normal and happy to go. (Thank you God)
     Then I came to the realization that Keira was going to have her first official ABA session with her teachers today. It was in jeopardy of being canceled once again. This was the history: They canceled, we canceled, they canceled and now, WE, were going to have to cancel again. Was this ABA therapy EVER going to start?  So, I came up with a plan. It included Grammie helping and basically reorganizing her whole day. I called the ABA school and asked if it was OK if we did the therapy at Keira's grandparents house. She is there at least one time a week, if not more, and there are plenty of toys for them to use. Grammie rearranged everything (Thank you Grammie!) and came to sit with Sam for 2 1/2 hours.

Miserable Sam

Urchin Keira

     I disinfected a special spot for Grammie. Keira and I went to get to know her new teachers at 12pm after I had bleached and disinfected parts of the house at a feverish pace. I cleaned Sam up, got Keira ready by bolusing her Pedisure and her seizure medicine via G-Tube and got her dressed. I did this while she happily kept tipping over the dinning table chairs and attempted to climb up on every surface imaginable. She had a blast with her new teacher friends and they seemed really nice. They played with her so she could get to know them and get a baseline of where her development is. It will be like this for a while and then "Boom" ABA programs will be produced and the hope of seeing new skills develop will begin.

Brendan and Keira Playing

     While Keira was playing with her new teachers, I was texting the school nurse (Kailyn went down to her twice complaining about her cold trying to get out of school, but no fever), talking with the doctors office and a friend whose child was sick as well. All while answering questions and giving a little background on Keira. I feel like I should write up a history and hand it to them when they walk through the door. Providers never seem to read the paper work. Anyhow, the Dr. decided Sam needed to come in. I was convinced he had a stomach bug like his friend in his class, but they were concerned about the flu and the sinus thing. SO, after her therapy was done at 2:15, we went home, I put Keira down for a nap, Grammie left for 45 minutes and I worked on getting a very sick little boy into the car for a 3:15pm appointment. Grammie picked Kailyn up at school to bring her back and stay with her and Keira. I had Sam in the car and ready to go. We were a little late, but only by 10 minutes.  The doctor decided he had a sinus infection and may have a stomach bug on top of it. LUCKY US!! If he does indeed have a stomach bug, the roller coaster ride is about to begin! I really don't mind if we get one. It's part of life.  I just don't want Kailyn to get it. Having the stomach flu is on the top ten worst nightmares of parents of Type 1 Diabetics. It means sleepless nights and potential hospital stays.
     On that note, Sam seemed to perk up in the afternoon, but by bed time his fever was up to 101 again. He went to bed and had full on walking night terrors about an hour after he fell asleep. He said he was GINORMOUS (I find this word funny) and was screaming that he was bigger than all of us and his sickness was going to grow. Pretty deep. He came in and out of the terrors. All involving spies and him being a giant. This was all kind of funny in a weird sort of way. I have seen this before so I was not concerned. I finally thought he was in a good sleep and snuck downstairs only to have him follow me back down. His fever is down, but he still feels miserable and is sitting next to me watching Cake Boss. My kids LOVE that show.
    So, this is what I do all day. Sit on the couch and eat Bon Bons. What do other Stay At Home Mom's do with all their time? They must have a ginormous amount of free time like me.;)  FYI Ginormous is an official word in the dictionary ;)  The day is not over nor is this story, so, TBC....