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!

Teeth

Having little ones around is a constant reminder of the passage of time.  It appears my girls are getting older.  This weekend Julia lost another tooth bringing the total tooth fairy visits to our house to five (5!)!

Today I was playing with Emma and decided to check her bottom teeth and lo and behold her two bottom teeth are loose!  I have no idea when that happened and am glad I gathered the courage to touch her teeth - she has a mean bite and can't open her mouth when she wants making her chomp a bit like a pit bulldog.    I'll keep a close watch on the teeth now and when they get very loose I'll pull them out to avoid her swallowing them.

I'll end this post with a couple of photos from a typical weekend morning in our house.  We start the morning slowly and ramp up to full energy level by noon.

Equipment Post - Jogging Stroller and Bicycle

Second in a series on equipment.  The focus continues on good weather gear.

Special Tomato Jogger

• We love this stroller!  It's amazing how quickly we took to it and find reasons to use it on pretty much a daily basis.  We had tried it out at the Abilities Expo last year and loved it but hesitated on buying it because of the money.  A few weeks later we were figuring out what we could bring to transport Emma in Ireland when the jogger went on sale at Adaptivemall and we decided to go for it and haven't looked back since!
• When we tested it at the Abilities Expo they recommended the Special Tomato soft touch liners for the seat to help give Emma more support but when we finally took the plunge and bought the stroller we found out the liners were backordered and would not arrive in time for our trip.  We decided to try and make a go of it without the liners and it worked fair but Emma really needs the extra support to sit without slumping over.  We were SO fortunate that a local family had the soft touch liners their daughter outgrew and they offered them to us (THANK YOU SUSAN!).
• Emma still sometimes slouches a bit to her one side so I just cut up a pool noodle to give her a bit more support.  It's just something I'm trying out and not sure if we'll keep it or not.  
• We'll be able to use this jogger for a long time.  The max. weight capacity is 110 lbs. and Emma is a little less than 34 lbs. at the moment so she has plenty of room to grow into it.  
• It is super easy to move around on the pavement, grass, and bumpy fields and often Emma has the kids pushing her around in it.  Chris takes Emma running with it and Emma has no problem joining in his extended runs during his marathon training.  She loves when he takes her running and often expresses her extreme displeasure if his runs aren't long enough!
• It also has a very good warranty.  We had a couple problems with the jogger and the customer service department rectified it immediately.  I couldn't be happier with their customer service!

Freedom Concepts Bicycle

• Emma first tried out the Freedom Concepts Discovery bicycle at the Ability Expo last year.  There are many different vendors with various types of adapted bicycles and many different price points.  Emma tried nearly all of them and the Freedom Concepts was the only one she was able to move herself and had the best support for her mixed muscle tone.  Emma enjoyed it so much that she didn't want to get off the bicycle when her trial was over!  
• We left the Expo really excited we could get Emma a bicycle but when we received the price quote for it we knew there was no way we could afford it.  Then the most wonderful thing happened - Variety, The Children's Charity held a fundraiser that we attended and while there we found about a program they have to provide some funding for items including adapted bicycles.  We submitted all the information for the program and were THRILLED that Emma was approved for the bicycle.  Thank you so much to Variety for helping to bring fun into Emma's life with her bicycle!  We feel so blessed!
• Emma loves pedaling her bicycle which she is able to do mostly independently.  Sometimes her feet get caught where one is not in the air able to push forward and so I help her get that foot to the top to allow her to pedal and since she isn't very good at steering I help steer from behind.  It's a wonderful way to enjoy the good weather and she can join the neighborhood children when everyone is bicycle riding.  It is also a great way to give her a way to practice on reciprocal motion with her legs.
• As you can see in the photo this bicycle is a bit bulky and wouldn't be transported with a bicycle rack behind the car but that doesn't really matter to us.  We are so happy that Emma has a bicycle she enjoys riding and she uses it close to daily during the warm weather days!
• Emma has a lot of room for growth in this bicycle.  The model we have is designed for children ages 4-9 and maybe even longer.  Freedom Concepts is great to work with, too.  In the beginning we had a few problems and their customer service was easy to talk with and very quick to respond.  They even told me that they come to our area a couple of times a year and we can go for free adjustments when they are in town.  Fantastic!

Equipment Reviews - Wingbo and Swim Float

Emma uses a lot of equipment during the day for all different reasons - communication, positioning, transportation, and plain old fun!  This equipment ranges from relatively inexpensive to Oh My Gosh it Costs How Much???!!!!  And it takes up a LOT of space.  

Parents of children with cerebral palsy are often looking for honest opinions of equipment so they can decide if a product might/might not work for their child so I thought I would post our experience with the equipment we have on hand.  Also, we are going to the Abilities Expo later this week making this a good time to take an honest inventory of what we have now and how it is/is not working for us.  If I can find a link to the product mentioned I'll include it as a hyperlink.  I also want to state that I am not a professional and this is only my opinion of how the products work with my daughter so if you are considering purchasing any of these items feel free to check with your therapists to determine if they could be a good fit for your child.

First up is equipment we use that I associate with "summer" types of activities since our weather is getting warmer and we definitely are looking forward to summer here!

Swimming Head Float.

• There are a lot of floats out there to help children keep their neck above the water.  We were lucky that Emma tried out many different ones at our children's hospital aquatic therapy area with her physical therapist before we selected the Danmar head float as the best one for her.  This neck float was about $100 but it will fit Emma for many years so we thought it was a good investment.  She is in the size Medium - this photo was taken in 2010 and she was just barely in the size range for the Medium but her PT tested it out on her and we all agreed the Medium was a good fit (she would outgrow the small size too quickly).  I'm using this older photo because it might give you a better judge on the size.  We typically use this when swimming at in ground pools but as you can see here it also works well in a small backyard pool.  
• The rainbow strap is adjustable with a snap clip that makes it easy to put around her head even when I don't have help.  The material is very cushiony and I think it is likely pretty comfortable around her neck.  Emma has never complained about it so I think she agrees.
• Emma has never slipped out of the neck area.  We do stay close to her, though, keeping water safety as our focus when the girls are swimming.  Emma stays nicely above the water and is actually even able to swim on her own a bit with this neck float.
• For children that arch backwards a lot they also sell a float with a stability bar that will help prevent pushing her head backwards into the water.  This might be something to consider for children that have a strong arch or sudden movements.  
• We also have a Puddle Jumper float we bought at Target a few months ago.  I have to keep my hands on the strap at all times because Emma's head is a bit "top heavy" in it and if she doesn't keep her head up it will fall in the water.  I think it's handy to have both float options since they allow us to have fun while also working on some strengthening.  We work on Emma's head control while in the Puddle Jumper and work on standard swimming while in the neck float.  

Wingbo Swing.

• We bought this when Emma was a little over a year old and have been using it ever since.  At our previous house we would mount this outside in the swing set or indoors on a chin up bar and had a lot of fun with it!  In our current house we mount it indoors using the Rainy Day Indoor Playground mount  since the doorway is too large for a chin up bar and we don't want to put lots of holes in the ceiling to mount it with standard hardware.  
• Both Julia and Emma enjoy swinging in the Wingbo, but it is an especially good swing for Emma to work on strengthening her neck muscles.  I often play games with Emma in this swing like asking her to give me a High 5 each time she comes near me or passing photos back and forth with her or having her tap a ball out of my hand as she swings towards me.  
• The height of this swing can be adjusted so that she can swing freely in the air or so her legs can be on the ground to help her swing herself.  
• There is a little velcro strap that is used to keep her on the swing.  It isn't great at securing your child to the swing and Emma has jerked herself back before and would have fallen off if I wasn't right there with her.  I don't leave her unattended in the Wingbo and when this happened I was so glad that I always stay within arms reach.  For a while we used the Waist Trimmer that we bought at Five Below for $5 (now she is better able to use the swing without trying to fall and we mostly use the velcro strap that came with it).  The waist trimmer is great to use as a velcro band to secure Emma to various things so she can't fall over or out and it's very soft and forgiving fabric (its similar to this one).  

If you have questions on either of these items please post them in the comments section so I can answer them.  My next review will include her jogging stroller and what we use for her bicycle trailer.