Busy Days!

This is a busy time of year for everyone and we are no exception.  We are having so much fun and have some wonderful things happening that I need to take a bit of time to capture some of it.  

Julia is finishing up her first year of school.  Kindergarten was really good for her academically and socially.  I am amazed daily at how much she has matured and am overjoyed that she still maintains her super sweet personality that (to me) defines my sweet Julia.  This year she started reading and writing words, sentences and books.  She has a collection of books she wrote and illustrated at school and we were invited to a special event at her school called Meet the Authors.  She was looking forward to this day for weeks and when it finally arrived she was jumping around on her bed with excitement.  No problem waking her up that morning!  She has quite a collection of books, including My Mom, My Sister, My Fish, Dogs, The Chicks and Unicorns.  Her next book she plans to write it My Dad.  Phew!  Glad she didn't forget about dear old Dad!!!!!  We also have a journal she started the beginning of school with entries throughout the year and we can really see the amazing progress she has made with her writing.  It's quite impressive to see it all there in one journal and it is something I will put away in her keepsake binder.  

I was also able to attend the kindergarten Spring field trip to Hopkins Pond.  I missed the trips there in the Fall and Winter and Julia (and me!) was really hoping I could make it in the Spring.  It was a great day and the children had so much fun with the nature walk, picnic lunch and playtime.  It melted my heart that Julia wanted to hold my hand and walk all around with me instead of running off with her friends.  This is a great age and I know it won't last long so I'm going to soak up as much of the Mommy/Daughter time as I can!  After lunch the free play merged into a giant game of Duck Duck Goose and it was so nice to hear the children cheering for the Goose!  I have to say that the Quaker values taught in her school is a great match for Julia's personality and values and it's nice to see them in action.

Emma is doing some exciting things with the Eco2 with eyegaze system.  She is consistently using her eye gaze to choose milk or food during meals and also lets us know when she is all done.  She is also having a lot of fun using the Old McDonald page we programmed into it along with the Colors.  I use both of those pages for games or songs we sing and today we used it for our puzzled and Emma was especially engaged in using the eye gaze system to participated in the game with me.  This is VERY exciting to me!  We started filling out all the paperwork to have her insurance buy her one of these devices.  I am crossing my fingers that it doesn't take too long but since it is such an expensive piece of equipment it might take a while to get it approved.

We also attached some switches to her power wheelchair.  The company ASL loaned us the switches for a 20 day trial period and they have been wonderful to work with so far.  Emma's PTs are thrilled with the support they received to order the trial period equipment.  We were also glad that Emma's wheelchair vendor, National Seating and Mobility, came out right away to program the switches in her chair so we were able to start using the chair with the switches at the beginning of the trial period.  We have it set up with proximity switches that Emma activates by have a body part in close proximity to the switch.  The head rest has a "forward" proximity switch in it so Emma can move forward by placing her head back onto the headrest.  We also have a switch for left and right that we velcro to her tray table to determine the best placement for her to activate them.  I hope to have a video of her using the power chair with the switches soon.  Right now we are mostly working on her moving forward and introducing the left and right switches slowly since Emma is typically only interested in using the right/left switches to spin around in circles.  With practice I really believe that Emma will be able to work the switches to gain some independent mobility - how exciting!

Big News!

Emma met one of her milestones early!

It just so happens to be one that I wasn't really ready for... she lost her first tooth!

It's her bottom middle left one.  I found that it was wiggly the other week and last Monday she woke up and it was not in her mouth when I went to feed her.  My best guess is that she swallowed it during the night so I am officially declaring May 14th as the day she lost her first tooth.

We put the tooth fairy pouch under her pillow even though she didn't have a tooth to put in it and lo and behold the tooth fairy left her some money!  Emma didn't seem to notice the money but Julia was really impressed the fairy left her money when Emma didn't leave her a tooth.  She told Emma how lucky she was and that brought on some giggles from my cheeky little one.

Her bottom middle right one is also wiggly.  I think that could hang on for another couple of weeks.  I'm hoping that when it comes out we will be able to put it in the tooth fairy pouch.  We'll see.

In the meantime I think she looks absolutely adorable without her tooth ;-)

Hopeful Parents

My monthly post is up at Hopeful Parents.  I meant to link to it on the 12th (when I wrote it) but time got away from me.  I'm particularly happy with the subject I chose and wanted to make sure I captured it here so it will be included in the hardcopy I plan to make from this blog....someday!

Living with Ambiguity
Navigating life with a special needs child requires learning to live with ambiguity.  I'm a trained scientist who likes to put some order into our ambiguous lives so early on this journey I started reading research outcomes from clinical trials.  Specifically, I was looking for outcomes vs. various therapies.  I found that scientific trials are often not available on many therapeutic options and, if they are available, often none of the children in the study are similar to my child - a child with multiple handicaps.

Disillusioned with the available information I found it more productive to reach out to other families with children similar to Emma.  Sharing our experiences helped me narrow down which therapies we wanted to pursue further.  Some we liked, some we didn't.  All of us were trying numerous things at the same time so we couldn't uncouple the results, but we often had pretty strong feelings on what was working better than others.

Through our research we found one practitioner we thought would be a good addition to Emma's routine.  So we went for an extended evaluation and asked lots of questions.  The practitioner lived far away, was expensive and not covered by insurance but still we thought we might want to try it out for a few months.

Emma started to make amazing progress!  Her head control made a great leap forward.  And it wasn't only us that noticed the change.  Loved ones, teachers, therapists, and random acquaintances mentioned it to me all the time.  It is still not perfect but it is much improved over what it was only two months ago.  Her sitting has also taken off.  While she isn't sitting independently she needs much less support in sitting.  Taken together it represents remarkable improvement in her gross motor skills that came on suddenly.

The interesting thing is that life happened and we weren't able to fit that practitioner into our schedule.  Emma made these gains without adding anything new to her routine.  Maybe it was all her hard work over the last few years that came together to give her better control.  Maybe it is related to her getting a bit older.  Maybe it is related to her new wheelchair.  The truth is I'm not sure why she made these gains and I'm beyond thrilled about the remarkable improvements she has made.

Had we added that practitioner to our routine I would have attributed the changes to that person and therapy.  I'm actually quite glad that life happened and we weren't able to match our schedules for a block of therapy because if that didn't happen I would never have known that Emma would make these changes without the extra intervention.

Living with ambiguity is one constant on this journey through life.  While I'm still not great at it, I'm getting better at it everyday.

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Kristina is the mother of two charming daughters and wife to a wonderful man who puts up will all her wild ideas.  She works to raise awareness of cytomegalovirus (CMV) and preventing CMV exposure during pregnancy.  Kristina graduated from the national Partners in Policymaking program in September 2010 and is an advocate for disability rights and inclusion education.  You can read more at howlifehappens.blogspot.com

Motherhood and sleep

I am not a morning person by nature.  I like to stay in bed past 8am (or 9am if I really can have my way!).  If I wake early I enjoy staying in bed and watching some TV or reading a book while I ease into my day.  During the winter months - when the sun is not usually shining when my alarm goes off and when it's cold coming out from under my blankets - I prefer to hold off on a lot of conversation until I consume a warm glass of coffee.  During the summer months I tend to wake up easier and get going earlier since the sun is up and gives me energy.

I used to think that becoming a Mother would make me more of a morning person.  Most mothers that I know get up really early and have most of their to do list accomplished before the children are up and out of bed.  I figured it was just something that magically happens when you have little people around.  Plus, I thought children like to wake up early and drag their parent's out of bed!

Then I had my children and learned that you don't really get much sleep at all in the beginning.  Sleeping whenever the baby sleeps sounds like a great idea and I managed to do just that on occasion with baby Julia.  It didn't work as well with Emma since by then I was keeping up with a toddler.  As for the nights, Emma was never a great sleeper.  Julia started sleeping through the night at 10 weeks, but Emma was 3.5 years old before she started to sleep through the night a couple of times a week.  I would walk around in a haze a lot of mornings since I has so few consecutive hours of sleep.  It seemed that Emma's preferred sleeping time happened between 4 am and 11 am, but those weren't really the best hours for us to keep!  Julia has always slept great and it seems her preferred sleep hours are from 8pm - 8am.

I have a huge smile when I say that we've recently settled into a nice sleep pattern.  Usually it only requires one trip into Emma's room at night to flip her from her back to her belly when she cries.  We even have quite a few nights where there are no trips.  I'm crossing my fingers as I type this because I sure don't hope to jinx it!

On weekends it's usually me and the girls in the morning while Chris gets up at the crack of dawn to run.  The girls inherited my sleep gene and so we sleep a bit late.  Julia is often the first out of bed and comes running into my room (around 8am) where we talk and watch some tv.  Emma usually joins us a bit later when she calls me into her room to go and get her.  We sometimes read books and always fall into fits of giggles.  It's a great way to start the morning and really feeds my soul.

My version of Motherhood is a bit different than I expected.  I didn't magically turn into a morning person after the birth of my children.  I still seize the afternoon and evening much better than I seize the morning!  My mornings and so much else in my version of Motherhood is different than I expected.  But, different works for our family.  And I'm so proud Julia and Emma call me Mommy!

Thanks so much to my Mom for demonstrating what it means to be an amazing Mother!  You have always loved and supported me no matter what....even during my challenging years ;-)  Now that I'm a Mother I can more fully appreciate you.  I never knew it was so hard because you always made it look so easy.


Thanks to my Mother-in-law, too, for accepting me into your family and son's life with grace and love.  It truly is a pleasure to have you as my Mom-in-law!

Happy {belated} Mother's Day to all the Mothers reading this!

Equipment Post - Bike Trailer and Special Tomato Sitter

The equipment posts continue with a bicycle trailer and sitter.

In Step Bicycle Trailer (note: ours is an older model so not exactly the same item as in the link here) 

• A friend passed the bicycle trailer down to us and it is a big hit with Emma.  She loves when we pull out the trailer to go on bicycle rides and whines incessantly until she gets in the trailer and hits the road.  Seriously, we have to try and hide it from her until it's all set up and ready to go!
• The trailer is designed for two children (I think that would be a tight fit but we don't use it that way anyway) and we put Emma's Special Tomato Sitter in the middle and attach it with the straps around the sling-type seat it has.  
• There is enough room behind the seat to include a soft side medium size cooler for our lunches and a picnic blanket with some room to spare.  It also has two mesh pockets on the sides that could hold a sippy cup or other items.  
• The legroom for Emma is enough but I would not consider it spacious.  Emma is very long, though, and the sitter reduces the legroom a bit.  She seems quite comfortable, though, and Julia has sat in it and told us it's comfortable and not cramped.  I guess we are just used to much more legroom but Emma keeps her legs bent in a sitting position instead of out in front of her.  You can see in the photo above how her legs are nicely bent and her feet are hitting the trailer in the front.  
• It folds up really easily for transporting in the car and it attaches to the bicycle quickly.  You basically screw the attachment thing to your bicycle and the bike trailer loops into it with a metal loop thingy.  Notice how savvy I am by pulling out my technical terms ;-)  From folded to up and running it takes about 3 minutes but apparently that is still a bit too long for Emma to wait if you heard her tell it!
• I had thought of these in the past but never thought Emma would be able to sit in the trailer for any length of time so I didn't want to invest in one.  I'm so glad it came together for us with the hand me down trailer and the sitter to make it possible for Emma to enjoy a bike ride.  We really love how the bicycle trailer gives us the chance to spend lots of time as a family being active.  We often pack it up in the car along with a blanket and picnic, hook our bicycles to the car bike rack and head out for a day in the city park.  

Special Tomato Sitter

I wanted to show a full shot of Emma.  As an added bonus you can see my messy yet functional sewing/craft table!  

• Emma received this as her birthday present last year so she could be at table level for family meals.  We bought her the size 2 which is targeted to fit children age 2 - 6 years.
• This material is easy to clean and the harness cover can be placed in the washer - nice features considering Emma is one messy eater!
• The harness is easy to adjust but it seems like we never have it at the perfect setting.  I guess that is because Emma is hard to get a great fit since she is quite squiggly at mealtimes.  I sometimes find this annoying.  
• The sitter is very light and easily portable.  It has two easily adjustable straps to attach it to chairs - one goes around the chair back and the other goes around the chair seat.  How you attach the straps allows you to position the sitter - either on an angle or straight up and down.  Emma's is on a bit of an angle since head control at mealtimes is a bit hard for her.
• The sitter can be used in the Special Tomato Jogger, but we use the liners instead.  We most often use this chair to eat and in the bike trailer which makes me very happy to have one piece of equipment that can function in multiple settings.  Emma would not be able to sit in the bike trailer without this sitter.

If you want to know more about any of the items in the Equipment series, please leave a comment and I'll respond!  Thanks!