Whitney's Heart Day 2010

This is Whitney's 2nd "Heart Day" - 2 years ago today Whitney had successful open-heart surgery and it is definitely a day we want to celebrate. Here is the post from last year's "Heart Day" http://acbyron.blogspot.com/2009/12/whitneys-one-year-surgery-anniversary.html

We have two friends whose children are at Riley Children's Hospital this week having open-heart surgery. Ryan is 5 months old and had successful surgery yesterday and Maeve is also 5 months old and has her surgery scheduled for tomorrow. Please say some prayers and send positive thoughts for them, their families and the doctors, nurses and staff at Riley.

Here are some pictures from Whitney's 2nd "Heart Day" :)

Happy Thanksgiving

Whitney is giving her famous "stink eye" in this picture - could NOT get a picture with both girls smiling... so "the stink eye" picture will have to do :)

Hope everyone had a great Thanksgiving!!!!!!!

Therapeutic Listening

We have started a "therapeutic listening" program with Whitney to work on helping her filter out background noise and pay attention when someone is speaking to her or trying to get her attention. Whitney failed her newborn hearing screen and multiple hearing tests following her birth. Unfortunately, her heart was more of a severe issue in her first few months of life than her hearing and we were unable to pursue her hearing as quickly as we would have liked because we were more focused on just keeping her alive and getting her to her open-heart surgery date (December 1, 2008 - 3 months and a few days after she was born) and then keeping her healthy and helping her as she recovered after surgery. We then ran into a problem with an ENT that after waiting nearly two months to get in for an appointment (after Whitney was starting to recover from open-heart surgery) did NOT do her job thoroughly. She merely looked in her ear canals and proceeded to tell me that her ears are clear and look just fine. She did not do a tympanogram, she did not read any of the failed hearing test results and when I got out information I had printed from the NDSS (National Down syndrome society) and expressed concern about how most of the hearing loss in people with Down syndrome is due to undiagnosed fluid in the ears and that they basically recommend tubes almost as a preventative and how with Whitney failing multiple hearing tests that I would like to look into the option to place tubes. This doctor proceeded to tell me (and I quote) - "Well anyone can put anything on the internet." She said this with a very condescending dismissive tone. I wanted to say "It is not like I got this off of some lady's blog - this is the National Down syndrome Society and they are very credible when it comes to information regarding individuals with Down syndrome." - but I did not. Instead I let her speak to me like this and I left the appointment very upset. I then called and requested all medical information regarding both Anne and Whitney (Anne had 2 sets of tubes placed by this doctor when she was a baby and when she was almost 2 years old). I then emailed the Indiana Down syndrome parent distribution list and asked for recommendations for ENTs in the Indianapolis area. We had to wait over two months to get into this doctor and she immediately scheduled Whitney for tubes in both ears. We are VERY happy with our new ENT and Whitney has had two sets of tubes placed since just before her first birthday. The first set of tubes fell out very soon after they were placed and we did not realize it for a few months. It took a little while longer before we could get in for surgery but when we did, we had "t-tubes" placed (March of this year) and Whitney's hearing is SO MUCH BETTER! It was like a cloud lifted.

Throughout this ongoing battle with fluid in Whitney's ears and not being able to hear due to this thick glue-like fluid, Whitney missed the first 12 critical months of language acquisition as well as possibly the natural time to learn to respond to your name and to respond to sounds in the world around you. It is noticeable that when you call Whitney's name she does not always respond or does not know how to tune out other things and focus attention when someone is trying to get her attention. Part of this could be "selective hearing" :) But, another part, I think, is that she just never naturally learned to respond by turning and focusing attention when her name is called (because she could not hear very well due to thick glue-like fluid in both ears)

We are very lucky to have WONDERFUL therapists and also a very caring and WONDERFUL preschool teacher for Whitney. Whitney's teacher is the one who asked me if I had heard about any therapeutic listening programs or if it was something I might want to look into or consider to help with Whitney's ability to turn to her name consistently or to tune in to the world around her (and also tune out background noises). I asked our therapists about this and it turns out our Occupational Therapist is trained in a therapeutic listening program called "Vital Links". This type of program is often used with children who have sensory "challenges" but we are trying to use it to achieve better response to voices and sounds and to be able to filter out background noise. On the Vital Links website they have the question, "What is Therapeutic Listening" and this is their definition:

Therapeutic Listening® is an evidence-backed protocol that combines a sound-based intervention with sensory integrative activities to create a comprehensive program that is effective for diverse populations with sensory challenges. Therapeutic Listening can impact sensory modulation, attention, behavior, postural organization, and speech and language difficulties. Trained therapists learn to use modulated CDs to set up programs for clients in homes, schools and clinics. Listening is a function of the entire brain; when we listen, we listen with the whole body.

I do feel like this program is making a difference for Whitney. Our biggest challenge is keeping the headphones on her head because they are still very big on her tiny head, even in the smallest setting on the headphones. She is getting better about not immediately taking them off as soon as we get them on her head - but as soon as she remembers they are there, she tries to take them off. She seems to like the "listening part" but not so much the having something on her head part :)

Here are some pictures of Whitney during her "therapeutic listening". Hope this is helpful in case anyone else is experiencing this with their children or if their children have any sort of "sound defensiveness".

Happy Halloween

Anne and Whitney with "Skellie" the skeleton at the Indianapolis Children's Museum
Whitney our "hula girl" and Anne our "bumblebee"

it's been a little while...

sorry for my lack of posting recently (with the exception of the posts about whitney and anne's cute new shoes!) - i am not sure where the time seems to be going.

since school has started we have also increased whitney's therapies. she is now scheduled every week to receive two speech sessions, two developmental therapy sessions, one occupational therapy session and one physical therapy session. these are all therapies that she qualifies for based on her annual evaluation that took place in august through the state of indiana's early intervention program (First Steps). we LOVE all of our first steps providers (thearpists) and have been VERY lucky to have such wonderful people looking out for and helping miss whitney along.

we also added horse riding therapy (hippotherapy) through insurance about 5 weeks ago. we are doing this on our own in addition to the EI therapies. i put whitney on the wait list in February or March so that when she turned 2 and was able to begin horse therapy - we would be good to go. we elected to have her receive occupational therapy through TherAplay knowing that she would receive the benefit of the horse riding for half of the session whether we chose occupation or physical therapy. right now we would like whitney's fine motor skills (self feeding, pincer grasp, drawing with crayons, shape sorting, putting pegs in a hole, etc...) to get a little more work because her "pt" skills seem to be coming along - she is getting more steady at walking with just one hand held :)

anne is LOVING school this year - she is in preschool 3 days a week. she also is happy to have whitney going to school one day a week with her and their classrooms are right next to each other. i was worried about whitney going to preschool this fall (we also put anne in preschool one day a week when she turned two) because she still cannot walk unassisted and she does not speak very clearly yet - but she is signing QUITE A BIT now (over 50 signs) and her teacher and the director have been OUTSTANDING in assisting Whitney when she needs it and talking with me about how to adapt certain activities. For the most part - Whitney is keeping up and shows improvement every week in "preschool" :)


there are many more things i could think of to "update" this blog with- and i will try to be better at posting more often and "catching up" both on writing and reading all of the blogs that i LOVE! hope everyone is having a good week so far! i will end with some recent pictures...

pumpkin patch

pumpkin patch

whitney riding at therAplay

anne's tea party for her dolls

2010 buddy walk

pumpkin patch

first day of school

first day of school

Our Bugaboo Shoes (1/2 off until Oct. 15th)

I have had some questions about what size I ordered for Whitney to fit with her Sure Steps - so I thought just in case anyone was wanting to order the Bugaboo Shoes (http://bugabooshoes.com/index.html) but not sure what to do about sizing I thought I would share what sizes we have for Whitney and Anne and their measurements.
On the website, there is a list of sizes with the length of the shoe given in inches. Whitney is currently wearing a size 3 (5 inches) with her sure steps and this is a perfect fit!!! Whitney would most likely wear a size 2 without sure steps (she still fits into a cute pair of baby crib shoes from gap that are labeled size 6-12 months!) and her foot measures 4 inches almost exactly. So for her, the 3s were big when we got them, even with the sure steps but now they fit perfectly. I have also ordered 2 pairs of size 4s but they are still too big even with her sure steps. I couldn't help myself - I also ordered a pair of size 5s for when her feet grow even more - how could I pass up 1/2 off. By the way - the code for 1/2 off is SALE and the sale ends on October 15th!
If you are thinking about ordering any Bugaboos for your older children - Anne is 4 years old and we have two pair of size 9s. According to the size list a 9 is 7 1/2 inches long. Anne's foot measures just over 6 inches (almost 6 1/4 inches) - so with socks a 9 fits with a little bit of room to grow. I also ordered a size 10 but it is way too big at this point in time - hopefully in the spring they will fit :) Hope this helps!!!

anne's new size 10 bugaboos

size 3 Piper next to size 4 Piper

size 10 Paulie Ann next to size 9 Paulie Ann

Anne's foot next to size 9 Paulie Ann

Anne's foot measures about 6 1/4 inches

Whitney in her Sure Steps with her new size 3 Piper shoes

Whitney in her Sure Steps with her size 3 Camille shoes (can you tell she has worn these a lot?!?)

Whitney with her Sure Steps

Whitney's size 6-12 month "crib shoes" that still fit!

I love these little tootsies!

Whitney's foot measures 4 inches long

Our Bugaboo Collection :)

GREAT shoes!!!

I have been meaning to share this since last week when Heather (Zoey's mommy) posted about needing to find some new shoes for Zoey to wear that will work with her Sure Steps (orthotics). I found out about Bugaboo Shoes last winter when Whitney finally started to "bear weight" on her legs and we needed to look into getting orthotics and shoes that would give a little more support than just cute "crib shoes". I left a comment on Heather's blog to let her know about how much we love our Bugaboo Shoes and I went on the shoe website to copy and paste it for her and found out that right now they are having an inventory reduction sale and all shoes are 1/2 off!!!!!!! (use the code SALE at check out for the 50% discount) Once I found that out, I of course had to order some new shoes for Anne and Whitney. We LOVE these shoes and cannot say enough about them - I would highly recommend them, even at full price!!! (they have boys shoes too!) I will try to take some pictures of our "models" (anne and whitney) wearing them - but right now they are in bed, so pictures from the site will have to do :) Just wanted to share this great find!!!

anne has these in orange + one size bigger in pink waiting for her to grow into them

Whitney has these in pink and we LOVE them!

bone marrow donor registry

I have been reading all too much recently about friends who we have met through our blog whose children are going through or have been through treatment for leukemia. One little girl, Lois has just relapsed 2 weeks after she finished 3 years of treatment for leukemia. She now needs a bone marrow transplant. To quote her mom, "I don't know the odds that a match for Lois will be found. But I know that Lois isn't the only child in this situation right now. And it's possible that YOUR bone marrow could save the life of a child like Lois. So I encourage you to visit www.marrow.org and add yourself to the National Bone Marrow Registry."

I registered in October of last year (2009) to "be the match" and I hope someday I can donate my bone marrow to save someone's life. Please consider taking the steps to become a bone marrow donor.

jumperoo take 2

this past weekend we decided to get whitney's jumperoo out of storage and see how she did in it. i think we put it away a few months after her first birthday so it is like it is brand new to her. when we had it before she was so tiny that even at the lowest setting for the seat her legs barely touched the ground - but she still had fun in it. now that whitney is taller she can reach the floor and really "stand" and "jump". i was thinking that it would be a good way to get her to "stand" and "bear weight" on her legs (with the added bonus of keeping her from going to unroll the toilet paper or empty all of the books off of shelves, out of baskets, and in general "cause trouble") :) Here are a few videos of her in her jumperoo in June of 2009 and now in September of 2010:




+ today I had the girls dressed alike and thought we would do a mini photo shoot:

how is this comfortable?!?

our big two-year-old

Whitney had a fun birthday week! We started the week last Sunday with a birthday dinner with our families - it was a lot of fun! We also took a week-long break from appointments of any kind - no therapy appointments, no doctor apointments - just play dates :) We had two playdates at two different splash parks in town, spent her actual birthday at the zoo, went to a farm (Traders Point Creamery), went to the Indiana Dunes and spent time today with my grandma and aunt (who was in town visiting). It was a busy and fun birthday week - now Whitney is officially a two-year old! Anne especially enjoyed Whitney's birthday week -including enjoying many of Whitney's presents. It is a good thing at this point Whitney is still ok with sharing her new toys with her big sister... Hope everyone has a great weekend!!!