Vacation or Therapy?

I always worry when Hailey has a break in therapy or a change in our schedule.  I don't know why, but I'm always worried she will regress or not progress in areas.  Vacation was fun for all of us, but by just having fun and being with family Hailey had LOADS of therapy!

Last year we had issues with Hailey having sensory issues at Disney.  She didn't like the shows when the rooms would get dark.  She didn't like loud music.  This year, she watched the shows, danced and threw her hands in the air and she giggled.

Hailey LOVES music.  No matter where she is, if she hears music, she has to move.  Disney was no different (there is a LOT of music).   Here are two examples, one in a stroller and one on the loose.  The night one (it was about 10 p.m.), she couldn't decide if she wanted to dance or run, so she did both :-)

Hailey did a LOT of walking at Disney...on different surfaces:  grass, sand, in the water, up inclines, down inclines and up stairs.  She followed big cousins, she followed little cousins.  She is almost running.  She has the fastest walk of any little kids I've ever seen (especially if she thinks she has something she's not supposed to have or if she thinks you are chasing her).  The "run" is accompanied with the funniest giggle you have ever heard!


I was amazed at how verbal Hailey was at Disney.  She imitated sounds and tried to say more words than ever.  I don't know if it was all the extra people, the excitement of being somewhere else.  Who knows and I don't care...it was awesome!!!  She has continued that at home and has been increasing both verbal and signed vocabulary.  Her communication followed suit.  She started requesting more items and did much better at getting her point across...both positively and negatively.  I think all of us got a few doses of her "no, no, no".  She found out quickly that signing "cookie please" to her aunt would lead her straight to a cookie display where she requested the same from the cashier.  She also learned how to be sneaky.  When the cookie was given to Hailey before dinner, she quickly shoved all of it into her mouth as mom approached.  Such a character!!!

Cookie?  What cookie?

Hailey wanted to spend a lot of time with Aunt Staci that week....I wonder how many cookies she ate :-)

She also signed with strangers.  One morning she started signing cookie to the woman sitting beside her on the bus to a park.  The woman asked Hailey why she was asking for a cookie so early in the morning.  My sister-in-law was surprised that the woman knew what Hailey was signing.  The woman chatted with Hailey and asked her aunt questions.  As we were getting off of the bus, she told me that she was a special education teacher for children ages 3-6.  She was impressed with Hailey's social, verbal and signing skills.  As I said yesterday, she added signs too.  She came up with new signs for 8 family members and kept using all her old signs.

Vacation turned out to be a huge boost of speech therapy mixed in with bursts of physical therapy.  I do think, however, we were all tired by the end of the week with "What's that" and "Who's that"?  She insisted on high-fiving and waving to as many as she could.  There are a lot of strangers at Disney and apparently, our social butterfly thought she needed to meet them all!

Can't wait to see how she reacts when we go back!!!

Not the Battle I Expected!

In case anyone has forgotten, we have an entire graveyard of sippy cups/straw cups/open cups...I think last count there are 15 different varieties packed away in the basement. 

Here are a few...

Hailey was getting to the point where she would scream and cry if a cup of any sort came near her.  She's used a straw a couple of times successfully for her developmental therapist and her speech therapist, however, never at home.  It was almost as if she just physically couldn't do it.  I felt bad to keep pushing it, but I was done with the bottles.  I know some won't understand, what's the big deal, it's just a bottle.  Brayden's bottles disappeared at 10 months...Ian never had them.  Sippy cups, straw cups...it wasn't a battle.  They weren't work.  I handed them a cup and they started drinking.  They just did it.  I didn't have to ask professionals for help, I didn't need to go on message boards and ask other mothers for tips and tricks (and try every single one of them and have them fail), I didn't google and read every article that I could about how to transition from the bottle to a straw.  Yes, that is what I have done with Hailey.  We have been working on transitioning since she was 9 months old.  Yes, 18 months ago. 

With only two speech therapy sessions left, I grabbed Hailey's straw cup and a juice pouch as I headed out the door on Thursday.  The boys only have a couple of weeks left of school and I was set to take away Hailey's bottles once school was out for the summer.  I was going to start by taking away her bottle after lunch and dig out the dreaded honey bear cup and start again.  Something had to give.  Something had to work.

With Ian and Hailey in tow, we headed downtown for speech therapy.  Hailey loves the waiting room almost as much therapy itself.  Lots of people to socialize with and they have nowhere to go :-)  She makes her way up and down the lines of chairs saying Hi and checking out what everyone is doing (working on laptops, paperwork, using electronics)...she's quite the character!

Playing peek-a-boo with one of the employees.

She found a mirror and started chatting away.

We headed into therapy with Jen.  In case I haven't said it in the last month, we love our therapist!  Jen is the best.  Hailey loves her.  She tolerates Ian hanging out in therapy (he has afternoon kindergarten and sometimes has to tag along).  She works great with Hailey and switches gears as frequently as needed to keep Hailey engaged.

Working on animals and puzzles.

Doing our zips and zooms.

Can't forget our alphabet sounds.

About midway through our session, Jen filled Hailey's straw cup and gave it a few squeezes.  Hailey then drank a few sips on her own.  We moved onto other things.  Several times through out the session, Hailey wanted more to drink and successfully used a straw.  At the end of therapy, we were given our homework until our next session.  This weeks:  continue working on two word sentences, point to items and say "this is ___".   (Hailey's favorite words are "what's this".  We are working on getting her to label items.  Our third task was "continue working on straw".  I decided on the way home to remove Hailey's noon bottle and replace it with the straw and then slowly phase out the other two. 

After lunch, I gave Hailey her straw cup again...no tears, no yelling....

Either I've been conned or it just clicked!

 That experience with the cup went so well, I thought I might try it again after nap time.  This is what I got...a few tears, but she drank almost 3 ounces of milk.

Apparently that wasn't as much of a fight has I expected so, I decided to try again when she would generally have an evening bottle.  This is the look she gave me.....

Well, that look isn't enough to get her mother to give up.  We'd done so well so far, might as well push the envelope.  She drank another 3 ounces at bedtime with a little bribery of a small, not so good for you snack of potato chips.  On Friday, I decided we made it through most of Thursday, why stop then.  I did get a few of her over dramatic "no's" during the day (see photo below), but there were no tantrums.

Day 2 - was AWESOME!

I did let Hailey see me pack up all of the bottles and parts on Friday.  She watched me closely.  I didn't throw them in the trash but she thinks they are gone.  Throughout the weekend, we have let Hailey sample a few other drinks from a straw while we have been out and about.  She really liked the boys' icee , obsessed with my water glass and yes, I even let her try Pepsi.  (To all the people who stared at me at Sam's Club while my daughter tried Pepsi...keep on staring, don't judge...you will never understand this milestone.)

I know most of my Facebook friends are probably annoyed with all the chattering I have had over drinking out of a straw and getting rid of Hailey's bottles.  I almost place this milestone up with walking (and it makes me dread potty training!).  We have worked so hard on this, there have been tears and frustration from both Hailey and me.  It was something Hailey just couldn't get or understand and I couldn't make her.  I couldn't will her to do it.  She had to do it on her own.  I hated that even giving her all the tools to accomplish it didn't help.

Hailey's last bottle was Thursday at 9 a.m.  I haven't given in and honestly, she hasn't given me that much of a fight.  I hope we can call this one a success!  And yes, I shed a few tears when I realized that my little girl mastered it...even if it wasn't when her mom wanted her to!  I also might have shed a couple of tears when Hailey told her daddy "straw" when we were telling him that the bottles were "all gone".

My little girl is growing up and I'm positive she might drive me crazy in the process, but check out those dimples...who can resist that face?!?!?

Evaluations, Therapy & the Down syndrome clinic

Before we had Hailey, I had visited Cincinnati Children's Hospital once.  I had heard many great things about the facility since had moved to Ohio 13 years ago.  I visited a dear friend's son there a couple of years ago.  However, in the last two years, we have visited this hospital or a subsidiary of it more times than I can count.  I remember driving there in the wee hours of the morning the day of Hailey's open heart surgery.  The streets were fairly empty.  Rush hour doesn't start at 5:30 a.m.  I looked at my husband to say something.  Before the words were out of my mouth, he said, "I never wanted to know this place like the back of my hand, but we certainly do."  How did he know what I was going to say.  We were sad about that fact.  75 hours later, that mood had changed.  Our little girl was "heart healthy" for the first time in her life.  Heart failure and death were no longer looming over our head.  We don't go as frequently for Hailey's heart, eyes, or hearing, but we are there often for other appointments.  Hailey sees her private therapists through the Thomas Center (the Down syndrome clinic).  I loathe the drive downtown every time.  I hate the traffic, but I love her therapists so much that I can't switch.  I spoken before about how your therapists become part of your village.  You trust them, you rely on them.  Your child develops a relationship with them.  Everyone has to click.  We clicked and I don't want to mess with that dynamic.  You've heard the phrase, "If it's not broke, don't fix it."  Hailey responds well and is progressing so we aren't messing with it.

Hailey ready to rock her appointment!

Originally, Hailey was scheduled to meet at the Thomas Center every 6 months.  Unfortunately, the way the appointment is billed and how my insurance pays, the appointment is quite pricey.  We see the same therapists privately that would evaluate her during the appointment so we only go once a year.  The purpose of the appointment is to get an overall check of how Hailey is doing in all aspects:  medically, socially, gross motor, fine motor, speech, nutrition, etc.  I know that people have different opinions of the appointment and the overall appointment can be quite overwhelming for some parents and some of the children.  Generally, the appointment will consist of vitals taken of your child and a quick question and answer.  Similar to what you expect from a well-check with your pediatrician.  In a group setting, you will meet with a developmental pediatrician, speech therapist, occupational therapist, physical therapist, nutritionist, social worker and a nurse.  This latest appointment of Hailey's (3 weeks ago), the physical therapist was out so the OT took over her evaluation.  In addition to all the others, we had a resident attend the appointment.  Hailey wasn't as friendly and cooperative with him as the others.

We were early for our appointment and surprisingly we were called back right away.  The nurse weighed Hailey, checked her length and measured her head.  She then took us into a room for questions. 

I'm sure I can help the nurse with this paperwork!

She asked us to wait there for a few minutes until the group was ready for us.  About 10 minutes passed and the nurse returned.  She said they were tied up in another evaluation and the child was not cooperating so Hailey and I would need to wait awhile longer.  The room we were in was small and extremely warm.  She brought Hailey a few toys to occupy her. 

Hmmm...the nurse is gone, I'm sure she won't mind if I rearrange her desk!

About 15 minutes later, the team arrived.  I think the room was a little small for all of us, but maybe it was just me.  I was extremely worried that Hailey wouldn't cooperate with the evaluation because of our long wait time.  I was partly right.  There were parts that Hailey 100% knows how to do, but refused.  Instead she would smile, stand up and walk away.  Fortunately, the speech therapist is one who knows Hailey so she "knows" what Hailey can and cannot do.  She has seen it and heard it.  My child was quite the stinker.  One part was a giant flashcard with several black images on it.  The speech therapist asked her what do you ride on.  Instead of pointing to the bike (the correct answer), Hailey signed "car" and made car noises.  Smart little cookie.  Hailey refused to stack blocks, but fortunately, I took a picture of her stacking while we were waiting.  I think I almost choked when the OT pulled out a handful of coins and a regular piggy bank.  We've never tried that at home.  I'm not purposely giving Hailey a choking hazard.  I thought for sure she wouldn't get them, but that little girl rocked it.  She put them all in the bank.  I was impressed with that one. 

The nurse let Hailey play with this light up toy...she was mesmerized by it!

At the beginning of the appointment, Dr. O asked how long Hailey had been walking.  I replied that she had been walking a couple of weeks before her 2nd birthday.  Dr. O continued asking me questions while observing Hailey with the therapists.  About 20 minutes later, Dr. O looked at me with a little of a shocked look on her face.  She said, "She just turned two."  It was a combination of revelation and question.  I nodded.  She followed with, "She is doing extremely well."  My mom heart expanded.  Sometimes with all the guilt mom's hold, it is nice to hear you are doing okay. 

After everyone evaluated, the group left the office to confer with one another.  A few minutes later, they came back in with their recommendations and results.  I never did ask where Hailey fell with gross motor.  To be honest, it isn't high on my radar anymore.  Hailey is walking.  We have her walking as much as we can when we are out and about.  Some days it is nearly impossible to have her walk places because we are on time constraints.  She is a "looker".  She wants to explore everything and speak to everyone.  Eventually we need to work on jumping, running, skipping, etc, but right now we need to build up those muscles by walking more and playing outside.  The OT said she is right on track for fine motor skills.  We need to keep working on it.  Play with sidewalk chalk this summer.  Keep working with crayons and pencils.  She doesn't recommend private therapy at this point.  The speech therapist said with receptive language, Hailey is at age level.  Proving that even though my little girl doesn't speak much, she knows what is going on.  She understands.  With expressive language, Hailey tested at 18 months.  Unfortunately, the testing model they use does not count sign language.  If they counted the 50+ words she signs, she would be at age level there, too. 

I left the appointment with several recommendations from each professional in the appointment.  We have no medical concerns at this point so Dr. O said we could come back in 2 years if we would like.  More than likely, we will come back next year, right as Hailey is transitioning into preschool.  At that point, we will probably pick up OT and alternate appointments with them and PT in addition to our speech therapy.  We are also considering having Hailey's sleep study done next year at 3.  She doesn't show huge signs of having apnea, but for some reason I'm paranoid about it.

Hailey likes to stay busy while waiting!

This week we received the written follow-up for Hailey's appointment.  They are all very good about writing the summary treating Hailey as a person and not a number.  She was described as "a delightful little girl who is doing extremely well.", "engages beautifully in a social environment", "beautiful little girl" and "engaging".  I generally loathe the follow-up summary because it depresses me.  This one was good with the exception of one part.  According to the nutritionist, Hailey's weight increased too much from 1 year to 2 years.  Dr. O didn't seem too concerned with it because Hailey has just started walking and we just recently switched from whole milk to 1%.  We watch portion sizes because Hailey doesn't seem to have the "I'm full" trigger or she hasn't learned to listen to it.  We'll keep an eye on it, but most of my kids thinned down once they started walking.

I'm glad that we have a wonderful Down syndrome association in the area and we have the Down syndrome clinic at Children's.  I hope they are a wonderful resource for others as well.

Therapists...Love 'Em or Hate 'Em

That might be a little bit of an overly dramatic title!  This is not a debate over whether or not to participate in therapy.  There are lots of opinions and different strategies work with different children.  There is definitely not a cookie cutter solution for everyone.

Yesterday driving home from Hailey's PT/Speech session, I was battling conflicting emotions.  Our PT cancelled our next couple of visits.  With Hailey walking now, she wants Hailey to spend her time practicing walking, building endurance, and strengthening her legs by walking up the stairs.  This can all be accomplished at home.  Since our insurance only pays for x number of therapy visits a year, she doesn't want to "waste" them now.  She would rather take a few breaks and let Hailey's stamina and endurance increase.  Later we can focus on other gross motor items...kicking, standing on one leg, running, hopping.  It made me sad.  I love Hailey's PT.  She is fabulous.

I started thinking about our therapists.  I truly believe it is not an easy task to find a team that you as a parent like and a team that works well with your child.  It takes the right combination of personalities.  It is imperative that you trust and respect your therapists.  You need to be on the same page as far as how much you are going to push your child, how often do you want to meet, etc.  Not every therapist is a good fit for your child or your family.  If you are only comfortable with therapy once every other week, you would not be a good fit with a therapist team that wants to meet twice a week.  Some therapists may be too soft or too stern for your taste.  Other therapist may recommend new, cutting edge therapy tools that may be too pricey for your budget.  Some only focus on exercises and skills that use items that are only accessible to you at the therapy center.  Other therapists are good at showing you things that you can do at home or use inexpensive items that are readily available.

We regularly see our EI therapist, a physical therapist and speech therapist.  We occasionally see an occupational therapist (this may increase next month after Hailey's evaluation at the Down syndrome clinic).  Yes, most of Hailey's therapists are privately paid for by our insurance and us.  We are paying them for a service, but we need to have a close working relationship in order for Hailey to be successful.  Eventhough they are paid, they become part of your child's village.  Hailey's team truly cares for her and her success.  Our EI therapist is in our home almost once a week.  She has seen me at my worst.  Struggling with Hailey's Ds diagnosis....her heart defect diagnosis...awaiting open heart surgery...missed milestones, etc.  She has celebrated with us...not only Hailey's accomplishments but also my sons.  The boys are here for a lot of her therapy appointments so our therapist has gotten to know them also.

So yesterday when Hailey's PT said that Hailey was doing fabulous and she wanted to skip a couple appointments, I was actually sad.  I love her therapists.  I love seeing them.  Sometimes, I need them as much as Hailey.  I need a professional person who deals with Down syndrome, telling me that I am doing a good job.  That my daughter is making gains.  That we are on the right track.  That reassurance is nice to hear.   On a bad day, it is the one thing that keeps me going.  I know that we will still see them later (and are fabulous about corresponding through email) but I know soon we will begin transitioning for preschool.  I will probably cry when we start preschool and no longer see our EI therapist.  Hailey will move onto preschool and receive her services at school.

We are fortunate.  We clicked instantly with our first set of therapists.  We didn't have to shop around for a good fit.  I know some families are not as lucky.  If you don't feel comfortable with your therapists, keep searching.  If you don't feel you can speak your opinion or you don't feel they are on the same page as you, keep searching.  The right team is out there!!!  I'm not sure how we got so lucky, but I'm so happy we did!  Thank you Jen, Abby & L!


These are old pics from my October post about therapy.  They are Hailey's PT/Speech team.  They are also the therapists that help with her evaluation at the Down syndrome clinic.

Here are a couple of Hailey's therapists that are not paid, but they frequently get overlooked when I talk about therapies.

Communication & Speech

Unfortunately, children with Down syndrome not only have to battle gross motor delays, but most times also have speech delays.  Many insurances do not cover or do not want to cover speech therapies.  We have been fortunate so far that our insurance has not had an issue with any of Hailey's therapies.  We started speech therapy last year, not long after Hailey's first birthday.  I was skeptical at first as to what they were going to do or how they were going to help her.  Hailey's speech therapist is fantastic!!!  She actually has 3 siblings with Ds.  You can check out Jen's blog here. 

What not all people realize is that speech therapy is not "all" actual speaking.  It is about communication, labeling objects, learning concepts "over", "under", signing, and for some it is also feeding therapy.  One of my largest fears (yes, there were a lot of them) initially, was that Hailey would never be able to communicate with us.  To begin with, I used communication and speaking interchangeably.  A fellow blogging mom, Meriah, (you can read about Meriah and her family here) made me realize that speaking wasn't the same.  There are so many other ways that my daughter can communicate other than verbalizing her words.  Fortunately, Hailey has picked up signing rather quickly.  If her mom's signing vocabulary was more extensive, she would probably learn even more, but I'm not as quick of a learner!  Last week, she started signing "Daddy work" and home.  I need to actually figure out how many words she does sign because I have lost track!

In speech therapy last week, Hailey imitated lots of sounds for Jen, but she is getting to the point that she doesn't always want to do exactly what Jen and Abby want her to do.  Abby wanted her to sit on a ball and copy sounds, but Hailey decided that she needed to see her best friend (her reflection) and make the sounds in the mirror.  They generally don't argue with Hailey unless she flat out refuses (which knock on wood, isn't often).  She signed when she recognized a word.  She is doing really good with her flashcards and recognizing an object when given two choices.  Hailey will point at objects in books.  We are well on our way to communicating. 

She is communicating her wishes and wants at home and to others.  She will sign for "eat", "sleep", "milk" and even sign some two word phrases (Daddy work, Daddy's baby, Papaw's baby, milk please).  It helps ease those fears that I had in the beginning.  With the amount of actual words she says, I truly believe Hailey will talk...I think she might just do it to keep up with her brothers and her mom...sorry Dad!!!

Last weekend, we traveled out of town for dear friends' wedding.  When we returned, I asked Hailey if she was happy to be home, she signed home and then said "home".  It was the sweetest sound in the world.  It comes a close 3rd after "momma" and "dadda".  She drags the "o" a little so it comes out "hooome", but it is all there and I keep asking her to say it because I love it so much (and yes, it made me cry)!!!

Here are photos of Hailey playing with one of her babies.  It was actually homework for speech therapy a couple of months ago.  Thank goodness there are no real babies in the house!

No, this wasn't taught...I think we might needed a weighted baby.

I'm not sure what was so funny.

Thank goodness this isn't a real baby!

Still laughing!

Patting the baby's back.

Feeding her baby.

Making the baby play patty-cake.

Bottle confusion?