Keira Speak

     At this point in Keira's development she should be able to sustain a short conversation with adults and understand simple one step directions.(and do them) Keira is far from that.

     I wouldn't call Keira Non-Verbal, but she has no reciprocal communication. Meaning, she says things, but on her terms and once in a blue moon. They are usually one word, but once in a while we get a phrase. She is almost never looking at us when she talks. Her way to get us to help with something is to throw it at us or go uh, uh, uh. She can do the help and more signs with physical prompting, but still has to be reminded. I am hearing a ton of Echolalia lately. My favorite the other day:
"Good Girl"- after I put her favorite puzzle program on the Ipad. I have not heard it since, but it put a smile on my face. I guess we need to change our verbal reinforcement to "Good Job".
Other things she says when she feels like it on a semi consistent basis:

"Hi"
"Ball"
"All done or all D"
"Ni Ni"- for night night
"Na Na" for No No
"Didi"-for Bippi
"Go Go Go"- (Thanks to Dr. Suess ;) )
"Uh oh"- whether done by mistake or on purpose lol
Makes Car noises
"Yay" and claps her hands.
Counts" onn, ewe, eee, or, ive, ix
Sings twinkle twinkle little star, but won't do it with you.

She has said other words, but they have gotten lost somewhere in that little brain of hers. I blame the Epilepsy monster. She has said:

"Neigh" for a horse
"Dada"
"Up"
"Out"
"Itsy Spider"
"Where going"
"doggy"
"I did it"
"Nanie"
"Grandpa"
"bye bye"
"apple"
Among many other one time words or phrases that I can't remember.

I do remember Sam doing this and it driving me crazy. I also remember him talking a lot more at this point. BUT, on the other hand, Keira plays appropriately much more than he did.

She is not into reciprocal communication or play. Everything is on her terms. Very shortly they are going to "sabotage her environment" (as they say) to try and MAKE her participate in communication. This may lead to some protesting, but is the best way to get her to pay attention to something other than what she is interested in and communicate with others. It is why ABA works. It makes children on the spectrum participate in things that they otherwise would not.  It should be interesting to hopefully see some progress.  I already see progress in her receptive communication. She understands much more than her testing showed.

THE MANY HATS OF KEIRA

If there is a hat, a bucket, a pot or pan, Keira will put it on top of her head. Even when she is really sick, which she is right now. Poor little bucket of sweetness. Her illness brought on seizures that we have not seen since December. Major bummer to know that the seizure monster is still there. She still puts hats on during moments when she feels a little OK, which reminds me that she is much more than a little girl with Epilepsy and Autism. She has a little spunky personality ;)

This is her MO. She usually dumps toys out of one of her bins and puts a bucket on her head. :)

 Christmas Eve. Trying to sneak into Aunt Katies Bathroom with Grahams Patriots Helmet.

 Hats and hoods to keep her head warm.

 A cloth bucket that Grammie thought would help Mommy get organized enough to put her keys in. ;)

 Kailyns hat knit by her Great Nana Robie.

 Same Outfit. Different Day. :)

Sams T-Ball Hat

 Today at Grammy and Grandpa's house. We got out of the house to take a stroll. Even though she is feeling very sick she was still compelled to put on Grammies Gardening Hat. :)

Things I never thought I would do as a parent.

1. Do an emergency G-tube replacement when my 2 year old (who has Epilepsy/Autism) decides it would be fun to pull it out. She did this tonight. I managed to shove replace the new tube back into her stomach averting an ER visit and/or new surgery. Some parents apparently can't stomach this. I can stomach doing it myself way more than going into the ER for yet another visit.

2. Hear my husband say: "Well, I guess it's good that she is exploring more things". Trying to look on the bright side of the incident. He was not the one that had to frantically try and put it in. He did help hold her down and asked what we were going to do about him going to work if I had to bring her into the ER.

3. Watch my almost 10 year old excitedly get dressed at the prospect of going to the ER. She kept saying to me that I could not get the tube in. She was bummed when I managed to replace the tube because she was ready to go. I was not going to let her come anyway.

4. Have to get my child's blood drawn to check medication levels. I get to go do this tomorrow. Her little hand has started to shake. A side effect of the seizure medication. She has had more blood drawn than any 2 year old that I personally know.

5. Have grown men run around my house 2.5 hours a day, 4 days a week, to play and teach her using ABA therapy. I appreciate it and know it works, but never thought that my parenting her would not be enough to help her learn to talk.

6. Replacing a pulled out G-tube. She pulled the balloon through her stomach (ack!!)
This is not Keira, but it looks exactly like hers.

I had to push the stem through the hole into her stomach. Then, using one of the external support openings, I put 5ml of water into it to blow up the balloon. Hopefully, this next one will stay put. This was actually the second time I have done this. The first one was because it had been in for a while and it was time for it to be changed.

7. Wonder why I did not become a MD or a Nurse. I actually never ever had any thoughts of doing this. It grossed me out thinking about it. But now, I have no aversion to needles, blood, or gastric juices etc... I was adamant that I was going to be a teacher and have my degree in that. But man, I have done more than my fair share of nursing/researching and diagnosing since becoming a parent.

8. Clean up bunny poop and chase after a dog. I am not an animal lover, but the rest of my family is so I lose by default. ;)

Baselines are done and ABA has officially started!

Excuse my horrible video, but she moves around A LOT! I am really just bad at videoing. She is supposed to be showing me her mouth by sticking out her tongue and she does! Her reinforcer is praise and tickles. They are working on belly too. This is one of tons and tons and tons of programs they work on with her for 10 hours a week until she turns 3. At that point she will go to the developmental preschool program.

She is also really digging the Apps on my phone and the Ipad. The Ipad is easier for her to use. There are so many programs out there for her to try. Her favorite is Shape Galaxy and Adam's Game. I am working on trying to make a "Keira's Game" so all of the people and objects are her own. After she touches three of the right objects the last object goes across the screen in various sizes, while making music.

 

Early Intervention is the key. We have 3.5 years to work on her talking and learning in order to get her ready for Kindergarten. Hopefully, the seizure monsters don't get in the way!! She is on Depokote and supplemental G-tube feeding and that seems to keep them at bay. We go to see yet another Epileptimologist in April to see if we can get more info on what is going on.

On a side note, I will have a Kindergartener, 5th grader and 8th grader then. (ACK!!)

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.

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.

PHEW!!

White rabbit, white rabbit, white rabbit!!! (superstitious good luck stuff) Yesterday was a day for the record books. The day started off rough, rough, rough, and ended rough. But, we made it through. I can happily report that my kids went off to school without a hitch this morning. A new routine has been implemented to make things go more smoothly. Sometimes things need to get shaken up! 
Anyway, today is the first day of Keira's official 10 hours a week of being in the 0-3 ABA program. She will have a teacher with her 4 days a week in our home. Mon-Thurs. During what was formerly known as her nap time.(This should be interesting) I am letting her have a little free time right now because she is going to get tired out with the constant one on one teaching. ABA is the only scientifically proven way that effectively teaches kids with Autism, but I think it can be used with kids that have other developmental delays as well. Her previous therapists do not believe in it and we did not click because of this. I know it works because Sam has already benefited from it. He was diagnosed with moderate Autism at 3 and is now in a regular classroom without supports or Special Education. He is on the "Tier" program, but I predict that is where he will stay. He is at grade level in all subjects now.
This is my hope for Keira in five years. I opened my blog back up to hopefully document her progress from my prospective. She has different challenges than Sam (Epilepsy and G-tube feeding), but hopefully we can find a way to tackle those issues in the future. Early intervention is the key and I plan to provide as much of it as I can for her. Hopefully, I will get to hear her say momma to me sometime soon!

ps: They canceled. Her teacher has a stomach virus.

"I wonder if 2011 will be boring?"

These were the words out of my husbands mouth last night. I paused for a minute and wondered what boring meant and thought to myself: "Oh, he meant no major anythings!"   My answer: "If we look at the last 3 years the percentages are not on our side. Lets hope for normal, whatever that is?"

Bad major things the last three years (............. means I'm not telling you! lol)

Autism Diagnosis
Type 1 Diabetes Diagnosis
......................
......................
Gall bladder surgery
Unplanned Pregnancy (Such a blessing that I could not imagine life without)
.......................
.......................
----------------
Birth of our third and last child, which led to....
Pulmonary Embolism and DVT. Good chance of dying.
Recovery of the above PE and DVT (So much pain)
Infantile Epilepsy
Trips to Boston
Failure to Thrive
G-Tube Surgery
Weight Gain (Me)

Good things:

My husband: He is healthy (as far as I know) continues to be able to provide for us, is a great father and my rock. Things get rough, but we always make it through it.

My children: Sam has made improvements by leaps and bounds. No one would know he was diagnosed with plain Moderate Autism 3 years ago.  His report card was a pleasant surprise!! We are getting use to life with Type 1 Diabetes. We would rather Kailyn not to have to deal with this, but she is thriving in and out of school. Keira: The fact that she was born!! I can not imagine life without her. She is so much fun, an easy baby besides the whole epilepsy thing, and just pure joy!! Just as recently as 3 weeks ago was the last time we saw a seizure and she is now in the THRIVING category. Gaining new skills every day. We got the all clear after an upper GI yesterday to get her therapy to try and get rid of the G-Tube. We hope to see continued Physical development.

My Extended Family: We could not have made it through the above without them. We love them very much and are thankful for EVERYTHING that they have done for us.

Here's to a non-chaotic and Happy New Year!!! :)

-Kristen

Keira saying spider, trying hand movements, saying all done and momma! Huge Developments!!

I am holding my breath that this is the beginning of more to come!!!  Notice her saying spider, momma and all done. It does not have to be said correctly for it to be counted as a word.  She also tries to do the hand movements and screams at me when I stop usually, but this was not caught on the video. :)  This all took place around 1am because her teeth are hurting. You can see her put her fingers in her mouth too.




PS: No seizures still except for when she was sick with a very high fever!!  Starting Stage 1 baby food, but she refuses to drink using any sort of cup or bottle.

Our Visit to Children's Hospital Boston: Synopsis and Questions.

Keira's current diagnosis:
Infantile Myoclonic Epilepsy

She has a sister with Type 1 Diabetes (age 8) dx two years ago who has history of reflex anoxic seizures and a brother with a dx of Autism (age 6) 3 yrs ago. He is doing very well and in a typical classroom without supports. (Title one for Math and Reading)


Keira's first symptoms started around June 5, 2010, when she got her first cold with a slight fever. She did not have a febrile seizure, it looked more like a startle response. The Pediatric MD assured us that it was a startle response at the time. It would happen with different sounds, when she looked at different lighting and then evolved into being spontaneous in clusters of 3 with her eyes rolling to the right side for no apparent reason at all. It also started to happen when she was drinking. At that point she was 7.5 months old and had started on chunky solid foods with no problems.

This is when we got concerned and called the Ped MD again (July 13, 2010). She had us come in and confirmed that they were, in fact, seizures (because she saw them herself) and called one of the Neurologists on staff at Maine Med so she could get an EEG ASAP. That would not happen until three PM the next day.

She had her first one hour VEEG and MRI at almost 9 months old on July 14, 2010 and was diagnosed with Benign Myoclonic Infantile Epilepsy(which meant she would outgrow it with no permanent damage). She had an MRI on July 15, 2010 that came back completely normal. At that point, she was not only meeting her milestones, but was ahead of them in the communication areas. She did not show the EEG pattern for Infantile Spasms (hypsarrhythmia). She was having the seizures anywhere from 80-100 times a day. We were advised that we should put her on meds because she was having them so frequently, so we did. She started on Keppra on July 15, 2010.

Keppra only reduced the seizures in half. She was then taken off of Keppra after a couple of weeks and put on Depakote, which reduced them to 10-20 a day, most of them happening when she ate/drank, when sleepy, and riding in the car. She at one time started to refuse the bottle and was down to 5 ozs of formula a day. We got her back up to taking a reasonable amount because we forced her to drink through the seizures using a bigger nipple and cutting more holes in them (12-15 ozs a day). The Depakote was then increased on August 24, 2010, when her therapeutic blood levels were tested and she was still only at 83. Optimal levels are between 50-100. After this increase we still saw no reduction from the 10-20 seizures a day and she was almost always having them when eating/drinking, sleepy and riding in the car backwards. Then around Sept 15th we realized that she was not meeting milestones and was even losing skills she had already mastered.

She used to do these things easily and can no longer :

Give us high fives. Clap and say "YAY". When you asked her how big is Keira, raised her hands for "SO BIG". Wave hi and bye bye easily (we have it on tape). Use her hand to sing a Native American song. Eat foods that were chunky, holding the foods and putting foods in her mouth with a pincher grasp. Say Momma (looking at me) Dada and Hi appropriately. She started to give a few sporatic high fives and make the momma, dada and hi sounds again as of (Oct 9, 2010), but it does not come easily to her.

Keira can:

Respond to her name. Laugh, giggle, and smile when people are playing with her. She screams sometimes to either hear her own voice, get what she wants or to try and fit into our noisy, chaotic house. Shakes her head No. She shakes her head no regularly because she does not want to eat. She knows it will trigger a seizure. Gets up to a sitting position and down from one. She does an army crawl. Has a pincher grasp, but won't put things in her mouth to eat in fear of a seizure. She will chomp on things that are not food, but not swallow. Bangs toys together. Picks up utensils. Crosses the mid line with objects and transfers an object from one hand into the other. She gives (cave) kisses when you put her right up to your cheek. Likes to read books. Likes to play with toys/experiment. Her fine motor skills might be right on track and she does have sensory issues. Hates baths, being touched, etc.(we have an evaluation for this coming up soon)

Keira has had a hard time with:

Since birth she would not apply pressure on her legs and would fold them up so we could not try and make her stand. We now make her stand and she curls her feet up most of the time, but yesterday she did it without crying or curling her feet up for the first time (Oct 7, 2010). 12 days from 12 months old. It is not a preferred activity, but we do it every day.

When presented with a new object she sometimes hovers her hand over it for a long time. It seems like she knows what to do, but her brain won't let her hand move. Once she gets into it she has no problems banging around etc.

Keira has never fed herself with a sippy cup or a bottle. She can hold them, but won't do it.

She has regressed to eating only stage 2 foods and formula from a bottle.

She does not use gestures, one after another, to get needs met, like giving, showing, waving, and pointing. She does reach for what she wants. She does not play peek-a-boo, patty cake, or other social games. Make sounds like "ma," "ba," "na," "da," and "ga" on a regular basis. (sporadic ma, da and ha sounds) Sometimes you can catch her saying Momma, but it has no meaning anymore like it did when she was looking at me and saying it and it is not on a regular basis.

After the realization that she was not meeting milestones and that she was having seizures almost always whenever sleepy, riding in the car, eating and drinking we rushed her down to the ER at Children's Hospital in Boston September 17, 2010. These seizures can last anywhere from seconds to three minutes in length now. The longest ones are when she is eating. She also tightens up and curls her toes whenever drinking a bottle. I had mentioned the loss of skills and eating problems with the Neuro in Maine, but he replied with an unhelpful, "Huh, that is strange." Children's Hospital Boston saw the seizures on video and in person and admitted her to do another longer VEEG. The first MD said they would do the VEEG for 24 hours and that they would check her Depakote levels to see if there was room for an increase and come up with some new meds based on the VEEG.

The second MD said that the VEEG showed the Myoclonic pattern, but was non-committal about identifying the seizures as myoclonic and said that they could also be clonic. He said that she looked like she was having reflex seizures and to talk to our MD and Dr. Expert (at Children's). We were scheduled to see Dr. Expert in Nov (that was in Sept) and this MD wanted us to see what Dr. Expert had to say about what meds she should try. He never checked her Depakote levels and did not want to step on anyone's toes. We wanted to make sure she was not having Infantile Spasms, but on the other hand were disappointed that he did not check her thoroughly--he never touched her. Especially, since we were talking about our daughter's developing brain and our difficulty in keeping her properly nourished. He did mention that she could still have developmental delays with myoclonic seizures and doubted that the Depakote was the problem.

We went back to Maine and called her Neurologist promptly on Monday Sept 20, 2010 as directed. After 2 days and 3 calls he called back and I had him look at the video of her seizing and he ordered an immediate increase of Depakote (without checking her levels). After 7 days with no change he ordered blood work checking her levels and other blood counts. Her Depakote level was 150, 50 levels higher than it should be. He ordered us to take her down to the first level of Depakote because the seizures never got better with the increases and started her on a new med called Zonisamide. After 3 days on the Z med she physically could not move. I called the Neuro again on October 1, 2010 in a panic and he had us decrease it in half to titrate her up even slower. She started to move again, her seizures when being tired have reduced, but otherwise we have not seen any improvement in her seizure activity. Some days we think we do and then the next day slaps us back in the face with even more seizures. Sometimes I feel like I can snap her out of the seizures and other times not. I never can when she is eating, drinking, or in the car. Just when she has spontaneous ones from being tired.

Our questions for the Epilepsy MD:

Are you 100% sure the diagnosis is correct and if it is not, what could it potentially be?

Should she have other testing done to see what is going on?

Such as, PET, (Blood Testing) Metabolic and any other type of disorders that cause seizures?

What do her toes curling while drinking and seizing mean?

I read that seizures with eating are typically focal motor seizures and are symptomatic?

Is she on the right medications?

What are her percentiles today for height and weight?

If eating epilepsy is treatment resistant (which I have read), should we put her on a feeding tube to make sure she is getting the right amount of nourishment and does not have to force herself to have seizures? This way we can avoid more medication that may be causing developmental delays? We are very concerned with the eating/seizure component and it causing her to not gain weight.

I have the G20210A prothrombin gene mutation. Could she have something similar to this causing her problems?

The diagnosis for infantile spasms can be made even if one of the 3 elements is missing (according to the international classification). She does not have hypsarrhythmia, but has the other components? Does Boston not follow this classification and only rely on the H pattern?

Do you feel comfortable working with our Neurologist in ME and if not is there someone you can recommended to us?

Our appointment is Tuesday at 10:30 in Boston with the Child Epilepsy Specialist

I have not decided if I am going to give this to the specialist. If I do I will have to do some rewording. ;)

Cheerleading

Was a hit
There were at least over 50 girls there.
She was still begging to show me the cheers she had learned as she walked up the stairs to bed.
Gorham does not have any teams for her age and they are thinking
of making one next year and she was begging me about it.
So watch out everyone!! She will want to cheer for you and has two weeks
until the next practice to get those cheers down!! 
She is recovering from a sinus infection (when Kailyn is miserable, we all get to be) and her blood glucose numbers have been really high.  They are doing testing at school, which she does not seem to mind, but I am curious how she does when she is high and producing trace amounts of ketones. In the past she has not done well at all.

I cut Sam's hair again today. It came out ok as usual (lol) and we need to buy scissors so I can fix it up before picture day next week.;)  I figured out that he is actually learning in school.
He has memorized some sight words. So YAY for learning.  He misses some work when he is pulled out for Title One for Math and Reading, but I do it with him at home.   He loves spelling words on his buzz lightyear game every night before bed after we read. I hope it is helping him with letter recognition.  It will be interesting to see where he stands when we go to conferences at the end of this month. If he is way behind we will be requesting testing for Special Education. He still has is Autism dx.

Keira did three things today that made me feel so much better and melted my heart.  She gave me one of her sloppy kisses again (my Mom calls them cave kisses) AND a high five.  Her motor planning is definitely off, but it IS there. She can not consistently give high fives, but she knows how to do it and can when her body will let her.  I know that she understands what I say, but it seems like her body can't do it. Sometimes she even shakes her head no (like no, I am not doing it or can't do it) She was also army crawling all over the place today.  Something I have not seen in over a week.  All of this despite the fact that she has a miserable cold.  Her seizures have disappeared when she is drowsy/sleepy, which is also a change from last week.  So sort of progress. As a friend has said "deep breaths".  She has appointments for independent evaluations for speech, OT and PT with CDS and a private therapy group for this month and for a feeding clinic at Maine Med. This all happened today. This on top of her big appointment next Tuesday. Can you say "head spinning"? 

Seth wonders why I am always so tired at night. I really don't like giving him a play by play of my day and we just talk about highlights or whatever else is on our minds.  When he asks again I think I will ask him to look at my blog. (I don't think he ever has) Maybe he will get it then?? ;)