Some of APRIL VACA

Vacation for us was trying to get Kailyn through her Birthday party without being ill and then dealing with illness the rest of the time. At least one of my three children have been sick each day since April 7. That is fifteen days if you didn't feel like counting. Kailyn was throwing out low blood sugars and ketones for three day straight, Keira is not sleeping and seizures reared their ugly head again.  I am getting sick of it. No pun intended. But, thanks to the B-day party, Art Camp and Grammie and Grandpa being able to entertain the kids I think they had a pretty decent time. Sam did get out with friends once, but no friends or cousins over. It did not help that they think it is summer. This wacky weather makes them think we can go to the beach and actually swim in the water ;)  Ouch! Here are a few pictures of them learning to do their Ripsticks. Huge hit that they got for Christmas. Sam is so proud that it says for 8 years old and up and he can do it. :)  They started out going around the island in the kitchen and progressed to making it outside in Grammie and Grandpa's driveway. I am hopeful that summer vacation will be much better and I will be able to leave the house with them much more often.

 I LOVE the tongue!! He always does it when he is concentrating doing something physical. lol

I CAN DO IT!!

The only time Keira has gotten out is to the Doctors and to get the kids at camp. This is the only picture I have of her during the week. We did go outside, but not in public. What a nasty bug they got!! 

CAKE BOSS BIRTHDAY

You Can Be A Type 1 Diabetic and Enjoy

Decorating Cakes Too.

Kailyn's favorite show and one of her favorite hobbies among MANY other

 things is baking and decorating. Just to clear things up, yes, you can have sugar and be a Type 1 Diabetic. A Type I Diabetic needs to eat the same healthy lifestyle as a normal child and that includes treats once in a while. ;)

She wanted a cool party that incorporated the Cake Boss methods.

I helped plan (Thanks to Pinterest) and her Grammie made it happen.

I helped pick out material that was cool for the tween set, picked out the cake to be made, wrote their names on hates and aprons etc.. I was the planner.

Grammie sewed all of the tiers for the aprons. Made the cakes, learned how to do everything and then did it. Kailyn is lucky to have a Grammie like her.

SO, Kailyn had her dream birthday party and is now exhausted.

A ton of Type 1 Diabetes stuff (illness/large ketones/lows) went on this last week, but the party went on. (A whole other post I don't want to relive)

NOW she has memories to last a lifetime.

Here are some of the pictures:

KAILYN'S CAKE BOSS PARTY!

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.

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.

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.

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.

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....