Tori turns 2...

It's been a few months since I've posted a Tori update. Life has been crazy busy with therapies, specialists, more therapy, feeding clinics, and more therapy! Sometimes it's hard to accept that this is likely what the rest our lives will be like.  Although they say you eventually get used to your new "normal," its been a year and I'm still waiting for that to happen.
I also worry that we are pushing her too hard and she will start equating all of this therapy as work instead of play.  It's definitely paying off, but she is just a little girl who needs time to just play.

The biggest milestone that occurred during the past few months has been Tori turning two.  Yes, I said milestone. Reaching the age of two without having developed Infantile Spasms (a very hard to control type of seizure that aggressively steals skills) means that her chances of  developing them are significantly lowered. Definitely worth celebrating!
We have also just celebrated 1 year with no seizures!!!
In the meantime, Tori had a blast at her 2nd birthday party.

-Tori's Birthday-

As I just mentioned, the past few months have been inundated with doctor's appointments.  Here is a quick summary of the information we were given by each doctor:

Opthamologist: Because Tori is so good about wearing her glasses and the crossing is corrected when she does, the Dr. is hopeful that she can outgrow the problem and not always need glasses.

GI: Finally happy with Tori's weight gain and we can discontinue all extra calorie supplements.

Neuro: Confident that Tori is in the clear for developing microcephaly, which often goes along with  having Liss. This had been one of my biggest concerns.

Orthopedist: Did not think Tori was very severe and gave us a lot of hope that she will walk some day!

We also added 2 new specialists this month:
Hershey Feeding Clinic: Developed a plan to increase the variety of foods that Tori will eat, and also to start using a regular cup to drink milk.

Developmental Pediatrician: Assessed Tori's communication skills.

Where Is She Now?
Developmentally, Tori continues to make improvements, and although they may seem small to others, we will continue to celebrate every advancement we see!

Gross Motor Skills (PT)
We've been having a lot of difficulty getting her AFO's to fit properly so she is still primarily in small ankle braces.  She has mastered her walker and can now turn and go around corners on her own.

-Tori's friend at school helping her with her walker-

Her core strength remains weak which is why therapists think she is not walking independently. She can however, gap between furniture that is 3 feet apart and has taken up to 4 independent steps. She's also mastered climbing up on tables, book shelves, etc. Just recently she showed us that she can sit in a chair and stand up on her own!
PT is one of the areas that we are going to start treating even more aggressively and Tori will now have 3-4 sessions a week.

-Cruising on the playground-

Fine Motor Skills (OT)
We feel that Tori has made lots of improvements here! She is using her hands much better than before. She will roll a ball back and forth with her friends, has shown that she can hold an ice cream cone on her own, and is holding her crayons the proper way when she colors. Tori can use a spoon on her own now but is still working on "stabbing" her food with a fork. Oh, and how can I forget - she points at everything!!

-Tori with her ice cream-

Speech
Speech and communication is still our biggest hurdle and Tori is becoming more and more frustrated.
She has mastered a few signs but we opted not to continue with sign language as her primary source of communication, as not everyone will be able to understand her.
A few months ago we started the PECS (picture exchange) system.  Tori is learning and showing improvements but is still far from using it as a primary source to communicate. She can distinguish between pictures and make a choice when given options, but the idea is for her to select and hand off a picture when she wants something. Tori likes to select her picture and not hand it over.
Her babbling has definitely increased more than ever and she is making a ton of word aprroximations but still not always consistent.
Speech therapy has been increased and we try to incorporate her communication book in all of her daily activities.

Special Instruction/Play Skills
Tori continues to do amazing!  This is where her cogntition comes into play and she shows us that she "gets" everything.
She can feed her baby dolls, push them in a stroller, identify body parts, play musical instruments, and help dress (and unfortunately) undress herself!

-Giving Elmo a turn on the Slide-

Tori will move into an older toddler room this fall at daycare.  We have decided to continue to place her with children her age instead of holding her back in hopes that she will continue to learn from them.  The kids are starting to realize that Tori is a bit "different" and are absolutely amazing in the ways they try to help her!!!  I've seen them cheer her on as she uses her walker in the hallways, bring her sippee cup over to her on the playground, and hold her chair out as she made her way over to the lunch table just a little slower than the rest of the class.
Its already starting to cross my mind how the other kids will treat her as she goes through school, but seeing this gives me a lot of hope!

-Hanging out at the Park-

April- A Month of Ups and Downs...

We met with the neurologist this month to discuss Tori's latest EEG.  This time her reading was "messier" than any previous ones, although it is also the first time she slept through an EEG, which could be the cause.  The good news is that neuro does not believe Tori is having seizures due to fact that she is doing so well cognitively. This would not be happenning if she were having enough seizure activity to cause regression.  The bad news is that she still had the regression, most likely due to other changes she was going through at home.

Ok, it was time to take action and get Tori back on track.
Although Tori has much more stability when standing than just a few months ago, it just seems like we should be doing more to get her moving.  We are scheduled to see an orthopedist at the end of the month to decide what type of braces to try next, although we already know they will be larger. . In the meantime, we have been doing everything possible to encourage her to walk more with her walker...including buying her some new shoes! (what girl isn't motivated by shoes!!) This might have done the trick.  In the past two weeks, Tori cannot get enough of her walker.  She will literally spend 45 minutes just walking back and forth through the living room.   Tori totally took to the catwalk last week at daycare when she used her walker and practically ran from one end of the building to the other. Nothing could slow her down!!!  As if that wasn't showing off enough, when we stopped to give her a rest, she showed us that she could stand on her own for 30 seconds without holding on to anything.
Now that she has shown us what she is capable of, look out! Her therapists are starting to work with her more aggressively, which even included putting her on a treadmill at therapy!!

-Tori bookin it at daycare-

-Tori on the treadmill at therapy-

Another area where Tori had regressed was language.  In the beginning of the month she was still not attempting many true words. Yes, we knew Tori did not have the speech that she should for her age, but reading her most recent speech evaluation was disheartening to say the least.  "Tori suffers from a severe language delay and has no true form of communication."  It still feels aweful even to write this.
I guess it is much worse on paper than dealing with Tori in everyday life.  Receptively she is just soaring!  She seems to understand everything you say to her, which is proven by the fact that she will often follow orders (when she wants to!!).  I just can't imagine how frustrated she must be not being able to tell us what she wants, plus I'm wondering just how many times she IS telling us things and we just don't understand what words she is trying to say. It was time to be aggressive and start augmentive communication immediately.
Because Tori's issues with fine motor skills sometimes make it difficult to use sign language, we have decided to use the PECS system, which stands for Picture Exchange Communication System.  We are still in the very early stages of this but have heard great things about it.  We are still very hopeful that Tori will develop speech, but would like her to have a way to communicate until then.

I'd like to end this update on a good note, so I will say again just how Tori's cognitive development has been through the roof!
Here are some examples..

-This is Tori listening to mommy tell to her to the plate on her head- (at that point I wasn't even sure if she knew what a plate or her head was, but she did it on her own!!!)

-Tori feeding her baby- (I literally took the doll and bottle out of the box and handed them both to her- and this is what she did!!)

-As adorable as ever!-

March...

I just wanted to put a quick update in here for March, even though we are only halfway through the month.  Last week, after discussing Tori's development with her regular therapists, the general census was pretty much the same...Tori seems to be regressing with certain skills.
The biggest area is probably speech. Although her receptive language skills are still improving, Tori has not attempted to say very many true words in weeks.  She also does not babble using consonant sounds nearly as much as she used to.
Gross motor wise, Tori is starting to drag her feet when walking or using her walker, and her left foot is turning in.  This is something that she had been doing months ago, and seemed to have overcome.
One other thing that was noted during a therapy session was her preference to stay fisted.  She was trying to turn pages of a book and could not because her hand was closed in a fist. This is also something that we have not seen her do in a long time.
Although her therapists all seemed to agree that this could be happening because of changes Tori is experiencing at home, I was not going to take any chances, so we have an EEG scheduled for this week to see if there is seizure activity that we are not seeing.
Hopefully this week we will get some answers and can get Tori back on track very soon!!!!

February-Still Going Strong...

February was a month full of doctors appointments, with not always the best news, but Tori's continued improvement developmentally made it a good month anyway.
Tori started the month off with another EEG.  Although I had been secretly hoping her brain suddenly cured itself, that wasn't the case. There was however, no new seizure activity so her medications remain the same.
Our next appointment was with GI. At this appointment the concern was raised that Tori has been losing weight, even though she eats like her mommy:-) We have since been giving her high calorie supplements daily and will follow up next month.
The last doctors appointment of the month has the most effect.  Tori was prescribed glasses due to being too far sighted. He left eye was turning inwards more and more frequently as she strained to see. (This has nothing to do with her Lissencephaly diagnosis and is just something she has).  Since getting them, Tori has done AMAZING with them!!!  She keeps them on all day with no problems...and she looks pretty cute too!

-Tori sporting her spectacles-

Developmentally, Tori is still going strong! This month she has continued to improve in all areas.
Her receptive language skills are developing every day. This month Tori started pulling the blanket up to play "Peek-a-Boo" on her own!! She has also been "hiding" things from  mommy on purpose. She loves to put her stacking cups down at her sides in her high chair and wait for me to look for them.  She is definitely getting the concept that her toys still exist even if she cannot see them, and often looks under the couch to see what she can find. Even though she still is not saying true words consistently, she can definitely understand them and is starting to follow orders much better. If you tell her to get a book, find her car, or pick up the spoon she will do it!

Tori's biggest accomplishment this month is how much her standing/walking has improved since getting her orthotics. During many PT sessions she has shown us that she can stand for up to 30 seconds, and take 2 steps independently before losing her balance.
Our proudest moment of the month came when Tori used her walker for the first time. This happened during a PT session while she was at daycare. She finally had the freedom to walk the halls on her own without anyone holding onto her!! 
The smile on her face the entire time was priceless. I am so lucky I was able to attend and get it all on video!!

-Tori walking with her walker for the first time-

 

-Tori being silly-

A Very Happy New Year...

After being completely spoiled rotten for Christmas, (all therapeutic toys of course;)) Tori started the year off great! There are alot of reasons for cake!! All of a sudden she is babbling non-stop and so much more alert. We think it is because she is just about weaned off of her seizure med, phenobarbitol.  We hadn't noticed her to be not alert before but now we can definitely see a difference.  Had we known this we would have NEVER agreed to put her on it in the first place!  She is now on a new medication and we have an EEG scheduled for next month to make sure it is working and there is no seizure activity that we aren't seeing.

One of Tori's biggest improvements this month has been her ability to play with/work/manipulate toys.  It's almost like a light just went on and she suddenly knows how to use everything. She is moving cars across the floor, kissing her baby dolls, and is voluntarily able to release the balls into her gumball machine. This is something we had been trying to teach her for months in OT.

Along with her almost constant babbling, Tori is definitely saying some true words!! One day she just crawled into the kitchen, got on her knees with her hands up in the air and as clear as day said "up" because she wanted me to pick her up!!  I also heard her say "ball" while we were playing, and many people have heard her say "all done" and "Elmo." She is able to sign "more" and signing "my turn" sometimes without any prompting when she sees something that she wants.

The best moment for me this month was when a friend whom has never met Tori came to visit. After spending some time with her she commented that aside from not walking, Tori was no different in her playing and babbling than her own son who is just 6 days older!!  Definitely made my day:-)

As for the rest of the month, Tori will get her orthotics next week. Hopefully they will start giving her more stability to walk.
We have also scheduled an intensive 3 day course of ABM therapy. For 3 days she will have multiple sessions of this non-routine therapy. ABM (Anat Baniel Method) is different from all of her conventional therapies in that it focuses more on teaching the damaged parts of the brain new pathways to do things, rather than forcing the body to do the movements. We have read about so many kids having success with this therapy how could we not at least give it a try?  Unfortuately it is not covered by insurance and very expensive.  Hopefully we will see some changes and find a way to continue with the therapy in the future:-)

-Tori liking her Xmas present-

-Trying out her new sled on Xmas-

-Tori's 1st snowman of the new year-

-Loving the sled-

December 2012

Up until now, I have been back-tracking to fill in this blog from all of the information we kept in Tori's journal.  We are finally up to date!
Here is an update as to where we as now with specialists and Tori's development.
This month we started seeing a new neurologist. Sorry, but I just couldn't bring myself to trust the one that blew us off in the beginning no matter how hard I tried.  We are currently working on switching Tori's seizure meds- weaning her off of one while increasing the second.  This has made her a bit crazy at times- going through the withdrawal of one and being more tired when the other dose increases, but overall she is handling it pretty well.
We also had a swallow study done, since it is so common for kids with Lissencephaly to aspirate. Luckily, this is not occurring with Tori. Her study did show more reflux than we thought so she will be seeing a GI specialist in a few weeks.
We are also planning to see a developmental pediatrician in the near future.

As for her development, althoughTori has been cruising for months, she is not yet walking. She just can't seem to get the balance. We are in the process of getting her fitted for orthotics that will hopefully push her along. Just recently she has started getting daring and trying to take steps on her own!!!!! I see a busted lip in her future!
She is doing great with feeding. She can now self feed with her hands, and her latest "yay for Tori" moment was when she started bringing a spoon to her mouth!!! Some of the food actually stayed on too!
Tori doesn't speak any true words yet, but is starting to use momom and dada with purpose. She does seem to understand most of what is said to her and she can follow simple instructions.

Tomorrow we plan on taking Tori to see Santa (hopefully this year she will stay awake!) and taking her to pick out her first real Xmas tree.
-Tori's Christmas Pictures-

Getting On With Life...

We were home from Seattle with all of the information concerning Tori's diagnosis. What now?  Well, nothing really. We just continued to do what we had been doing for months. Not giving up on our baby girl.
We began to celebrate every milestone or improvement that Tori made. With all of the therapy she attends and how hard she is pushed every day, there has been a lot of celebrating! (And a lot of cake).
Things that other parents might take for granted or not think to be a big deal are huge for us. These are things like hitting a button on a toy, rolling a ball, reacting when she sees Elmo on a video, splashing in her bath water, laughing when mommy or daddy do something silly, and bringing a spoon to her mouth.
The best advice I have gotten to this day came from a mom I met in an online support group whose child also had Lissencephaly. She told me to push Tori as much as we can, and then push some more. Only Tori will tell us what she can and can't do, not any doctor.  So although some nights it just really sucks to have to feed Tori her dinner at daycare, take her right to therapy, and bring her home at night  when we are all completely exhausted, it's what we have to do, and will keep doing.
One thing I can say for sure is Tori is the hardest working little girl ever. She never gives up and if she can't do something, she will figure out another way get the same result.
I also have to add that we are so lucky to have such amazing therapists and daycare teachers that put so much into working with her every day.
-Some pictures of Tori and her celebration cakes-