Denied a Family

Please read this http://pudgeandzippy.blogspot.com/2011/03/if-your-heart-hasnt-broken-for-this-boy.html about a little boy from Russia whose adoptive family was told by a judge in the region he is from that they could not adopt him - that his adoption was denied. because he has Down syndrome. Please pray that their appeal will go through and they will be able to adopt him and that other children with Down syndrome will not be denied a family who wants to adopt them merely because they have 47 chromosomes instead of 46.

Bathtime Fun

I have been terrible again about posting to our blog – things have been crazy! I have tons of blog posts in my mind and never seem to sit down to write them… we have been working hard to get our house on the market.  We listed it on March 16th, the sign went in the yard March 17th and on March 19th we received our first offer.  We countered back and forth and had an accepted purchase agreement by March 22nd.  The people who bought our house would like to close by the end of April – so we have 32 days from today until closing – yikes!!!

 

Meanwhile… we have a jacuzzi tub in our master bathroom that we NEVER take the time to use… we thought it would be fun to give the girls a bubble bath in the tub before we move.  Here are some fun pictures from what Anne said at least 20 times was “the best bath ever!!!”

 

Hope everyone is having a good weekend

Please help!

I am copying and pasting an email I received from a friend below to try to get the word out to help Lera and her family that is trying to adopt her. If you click on the link below you can read about the family that is adopting Lera from Russia and if you make a donation you can help save Lera's life!!! The donations through Reece's Rainbow are tax deductible. This is a miraculous organization that helps save lives of children with Down syndrome who are living in orphanages in eastern Europe and Russia because their parents gave them up for adoption. Many of these children, if they are not adopted by the age of 4 or 5 (depending on the country) are transferred to institutions where the living conditions or so deplorable that many die within a year of being transferred. Please read the email from my friend below and consider helping to save Lera. The money donated will go directly to her fund to pay for the cost of her adoption. Thank you so much!!!

Hello to my dearest friends!!

I am writing with a huge favor!! I am sure that many of you are familiar with Lera is has been waiting to be adopted from Russia for what seems like FOREVER!! Her family had an appointment this week to go and meet her for the first time and it got rescheduled because they still don't have enough money. The amount they need keeps going up and even though they have almost $20,000, they still need another $20,000. Here is the really bad news!!! Lera was just transferred to an institution. We all know how horrible this is!! What I am hoping is that maybe everyone can do a quick blog post or facebook post to spread the word to get people to help donate to her Reeces Rainbow account. This is so urgent!! Everyday she is in that institution is a day too long!! Here is a picture of Lera that you can use if you would like as well as the link to their donation page. Thanks for any help you can give for Lera!! Thanks.

http://reecesrainbow.org/sponsorhigbie

Love, Denise

Sisters

anne's haircut and whitney walking

I apologize for the LONG delay in posting to our blog. I cannot believe it has been two months and I have not posted anything. If anyone is still reading our blog - we have a lot to catch up on. I will start with our most recent highlights...Anne had 10 inches of her hair cut on January 21, 2011. She did not start “sprouting” hair until she was nearly 2 years old, and once it started to grow it did not slow down!!! In 2 ½ years she grew enough hair to donate!!! We have not yet mailed her hair because I wanted to research the different charities where you can donate hair and I think we have decided on Locks of Love. Anne was so excited to cut her hair to give to “a sick little girl” (Anne’s words).

In other exciting news - Whitney is walking! She is not walking 100% of the time yet (I think once she can go straight from the floor to standing she will be able to walk full time) but she can take 20+ steps until she falls and then she crawls to somewhere she can pull herself up to a stand and walks again. We are so excited to see her walking :)

Below are some pictures from anne’s haircut and a short video clip of Whitney walking. Sorry again for our absence, I promise to be better about posting more often!!! Hope everyone is having a fun Super Bowl weekend!!!


p.s. aghhhh the pictures are mixed up/out of order and i cannot cut and paste in blogger for some reason... oh well! :)

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".