Oral Motor stuff

School pictures from the LeeAnn Britain Center taken in October

When Alayna was little I was instructed to do oral motor exercises on her to help her with feeding and to get her mouth get ready for speech.  In being honest I did some but, I wasn't as great at doing these on a routine basis.  When you have a child with down syndrome you get thrown a ton of information in those first few months.  It took me a little while to sort through all the emotions, information and make a plan for what we were going to do with our little peanut.

Alayna could drink from a straw cup with only using her lips at an early age.  However, she would sometimes let milk drool out.  This showed me that she needed some extra strengthening in her mouth muscles.  Before meals I would have her bite on a teething toy that when she bit down it vibrated (a couple bucks at Walmart) for 30 seconds (or longer if she would) then I would massage her cheeks and lips.   After a month I could see the total difference that oral motor exercises made for her.  She no longer took in too much liquid, or let any drool back out. 

When I learned that our Down Syndrome Guild was bringing in Sara Rosenfeld Johnson, a speech therapist and oral motor specialist.  I was thrilled to spend the morning soaking in more information that will help the girls.

Rosenfeld-Johnson said that her oral placement therapy is an exercise, PT program, for the mouth.

I learned loads about what I can be doing with the girls to improve their oral motor production which will improve the clarity of their speech in the long run.   The goal is for everyone to understand everything the girls say.    This is one HUGE goal I have for both girls. 

Dariya still suckles even when drinking out of a cup or a straw (her tongue is wrapped around the straw or on the bottom of the cup).  This is due to lack of jaw strength.  She also grinds her teeth during waking hours, some not a lot.  But, this is also a sign of jaw weakness.  I have begun working on jaw strengthening exercises with Dariya.  Examples are chewing on a chewy tube or anything that is hard to chew like licorice that has been left out to harden.   I have also begun supporting her while she is only drinking out of a straw.  Within the past week she has already begun to be able to use her lips only to suck up the liquid.

I will be doing the straw hierarchy with both girls as Alayna drinks and eats fine however, she sometimes still has her mouth open in a resting position especially when tired causing her to drool some.   This open mouth will cause her to not be as clear when she is speaking.

One easy way & cheap therapy tool that I am using with Alayna is a tongue depressor.  I have her put a tongue depressor in between her lips and hold it there, not using her teeth.  Try it, it is a lip workout.  We have been humming songs with our tongue depressors in our mouth and she thinks it is a blast.  Cheap, fun and working on getting her to keep her lips closed all at the same time. Bonus!

Our materials are on their way and we look forward to using them and seeing how the girls progress in the next few months.

We will keep you updated as to our progress. 

What are you doing with your child for oral motor exercises? 

*As a disclaimer I am not soliciting this program nor the therapy tools we are purchasing.  There are many ways to work on oral motor skills this is just one program I think will be effective for our girls.

Family Picture Friday

Photos taken by Sophia Theodore http://somaphotographystudio.com/index.html

Have a wonderful weekend!

Heavy Metal

Who says metal isn't cool?

For the next year Aidan will be sporting a little more metal.  He had his palate expander and top braces placed yesterday.  He did really well as the orthodontist placed all the appliances.  Thankfully he isn't in too much pain (yet).  We will give him a few days to get used to the palate expander before beginning our daily turning of the key to open it up.  Oh won't that be fun?  

Super proud of you big brother!

Orphan Sunday

Over the last year our hearts have been forever changed for the plight of orphans.  After working so hard to bring Dariya home and traveling to Ukraine this summer and seeing the sights we saw we will never forget all the children in this world that don't have a family to call their own.

We pray that everyone who walked along with us during our adoption of Dariya has been moved as well.

We are so thankful to have our Ukrainian princess in our family and are thankful to the multitude of people who donated, prayed and helped us bring her home in a matter of a few months.

I could sit back and say we have done our part.  We have rescued our orphan, we have donated to other families adopting, our job is done.  But, truthfully you know as well as I do that the story can't end there.   If it did it would be a colossal fail on our part.   We have to keep praying, fighting, advocating and donating to help these children find families.

I prayed for God to break my heart for what breaks his and he did in a big way.  Jason and I continue to pray for where God is leading us to help orphans.  We know that we will continue to support Reece's Rainbow and the orphans that they list on their website and we encourage  beg you to do the same.

From November 1 through December 31st each year Reece's Rainbow holds their biggest fundraiser, the Angel Tree.  The goal is to raise $1000 for each child during the holiday season.  You can sponsor any child with down syndrome and help them get to their forever families sooner.  With any $35 tax deductible donation you will receive a Christmas ornament with your sponsored child's picture to place on your tree.  

My sweet Maria (Charlotte as she will be called) is getting to meet her forever family tomorrow morning!  I love that I have her ornament on my tree from last year and I love the connection I have with her family.

Or there are awesome Angel tree dollars available for the first time this year.  You buy the angel tree dollars and print out the certificate and give it to whomever and they go on the RR website and chose which child they want the money to go towards.   What a great stocking stuffer, teacher gift, therapist gift,or just an awesome way to spread the love and advocacy about Reece's Rainbow.

Click HERE to go to the Angel Tree page and pray over which child you would like to help this season. (Charity is still top of our list, just sayin')

Dariya says, "What are you waiting for go help one of my friends find their forever family"

Ear tubes are done

Dariya had ear tubes placed this morning and was home within 45 minutes of the surgery.  The doctor looked at her adenoids but, didn't think they were enlarged enough to warrant removal.
I can definitely tell Dariya is hearing better as every door creaking or quiet voice in the recovery room woke her up.
They whisked her away and back so quickly I didn't even have time to snap a picture.  They let her drive back to surgery in a little tykes car and she was happily waving goodbye.
She is really tired and sleeping now.  Praying that after she sleeps off the anesthetic she will be good as new!
Thanks for the prayers!  Sorry for no pics of Dariya, but stay tuned the amazing Sophia from Soma photography is taking family pics of us tomorrow so I will post those asap!

Thankful Dariya isn't a sweets eater otherwise she would be SUPER jealous of what her sister enjoyed today at preschool! (Thanks Ms. Juanita for the great pic of our girl!)  Alayna is finally starting to talk at preschool!  YAY!

Cupcakes are the BOMB!

Have a great weekend.

Just in time for her IEP

As Dariya's IEP is next week I have been thinking about what strengths and weaknesses she has and what goals we would like addressed at school.   I was thrilled (she says sarcastically) that she has chosen instead of napping to show off her fine motor skills.  For weeks I have gone in and found her asleep with her shirt off.  But, this week when I walked in I found this....

My chunky little butterball buck naked!

I dressed her but, she undressed herself 3 times.  After two hours of no napping and dressing games I gave up.  I think that skill is mastered. CHECK!

Then I began to think of vocational goals for her...You know it is never too early to start thinking about that transitioning.  So we have decided that since anytime Dariya sees a hairbrush she goes into beauty shop mode.  Complete with a heavy hand.  Don't even try to move before she is done.  She also includes with her services some great babble about how she can make you look beautiful in 3 easy steps. 

She usually comes to brush my hair but, this week she held down talked Alayna into being her victim.  

Maybe we could include some post school esthetician training in her preschool IEP.  Or maybe just when to STOP when your client says all done.

What do you think Juanita? =)

On a serious note, Dariya is having ear tubes placed and an adenoidectomy on Friday morning. We appreciate all prayers for a great surgery and uneventful recovery.  Thanks.

Slow start to Halloween

I have to admit that Halloween is my least favorite "holiday" and I do use that term loosely.  Never really enjoyed it even as a kid.  My husband on the other hand is my antithesis.  He would dress up in a costume daily if UPS would allow.
So when we spent the days before in the hospital and came home Saturday I thought that we could possibly pull Halloween together still.   We hadn't carved pumpkins, decorated or gotten all the costumes together yet.

Middle of the night Saturday Jason woke up with some kind of stomach bug that knocked him down until late Monday afternoon.  We missed church on Sunday because I didn't want to take Alayna.

Alayna woke up on Monday and didn't have the energy to go to preschool, missing their parade and party.  So she and daddy hung out on the couch while I went and watched Dariya march around.  Poor girl had that look like, "what in the world have you people done to me?"  As soon as the parade was over and she hit the classroom door her costume was off and she was ready for snack time. 

Dariya chose pretzels while all the other kids enjoyed mounds of sugary sweets. 

Alayna had a nap and was much better, not coughing during the day or night at all just first thing in the morning when she wakes up.

After Aidan got home, Jason was feeling better so they carved pumpkins and we had a bit of dinner before heading out.  We took the girls to 10 houses and Aidan went out with a couple of friends and their mothers. 
On the first house Dariya was going to walk on in when they opened the door.  Haha.  Thankfully Janette had her camera ready and took a cute pic for us. 
The next house Dariya put the candy back our neighbor's bowl.  Even funnier. 
But, by the third neighbors house she figured it out that they were giving her something and she readily chose one treat from the rest of the houses and was happy.  By the 10th house she was tired as she decided to skip her nap so we went home.  She went straight to sleep but, Alayna stayed up another 30 minutes helping daddy hand out candy.  She would see kids coming and start dancing around at the front door.  Super cute.

Thanks Janette for the great pic!

Overall, I would say our Halloween was a success.  The kids had fun and we had a blast watching them enjoy the evening.

LOVE Aidan's smile as he squeezes both sisters.