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After all most two months with no updates, we have finally had some time to upload new pictures.

Ally has had a cough since the end of May.  Her pulmonolgist, Dr. Choo-Kang, has been working with us to try to get rid of it.  Unfortunately, what we have done to date hasn’t worked, so today we had to go to St. John’s for a bronchoscopy.  He wanted to get down into her airway with a scope to see what he could see.  Here’s the verdict:  some inflammation (bronchitis), probably infection in the outer-most sections of her lungs, and severe tracheomalacia (the biggest problem).  When viewing her trachea, he saw that when Ally breathes, sometimes she has 90% closure of her trachea (no wonder the poor kid can’t clear anything out of her airway when she coughs).   So what does this mean for Ally?  The first thing we have to do is get rid of the cough, so she’s going to be on an inhalant (helps keep her airway open),  an oral medication (to hopefully help strengthen the muscles of her trachea), and more than likely, she’ll be on an antibiotic to get rid of a probable infection .  More long-term treatment includes using a VEST, an actual vest, that Ally will wear that oscillates her chest.  She’ll need to wear that 20  minutes two times a day (indefinitely) to help get the secretions moving.  Problem…insurance doesn’t like to cover the VEST, and the cost is several (whatever you are thinking is several, multiply that by five and that is how much it costs) thousand dollars.  Yeah, we’ll cross that bridge when we have to. — The above treatments will be on-going (like forever), minus the antibiotic, of course.

Other things we need to do… Ally needs to have another sleep study done (this involves spending the night in the hospital, hooking her up to TONS of wires, and then having someone monitor her sleep throughout the night).  The doc wants to see how this condition disturbs her sleep.  If she has too many periods of apnea, she will likely have to wear a CPAP machine at night to be sure she breathes throughout the night.  — Ally also needs to have a CT scan done.  It is possible that there is blood vessel leading from her heart that is pushing on her trachea that is causing the problem (or some of it anyway).  If that is the case, surgery will be required to correct that.

Did she get this because of the leukemia?  No, this is unrelated.  Because she has Down syndrome, her muscles have a lower tone than a typical child - even the muscles on the inside of her body.  The muscles surrounding her trachea between the cartilage rings are weak, and that is causing the problem.  Tracheomalacia explains why she has such trouble with respiratory issues in the past.  Poor kid.

There you have it, the details.  We’ll keep you posted on the blog in the coming days. The sleep study should happen within the next few weeks.  The CT scan will happen in seven weeks.  Keep us in your thoughts.

Yes, it has been a while…

Yesterday was a great day.  We loaded the kids up in the car and took them to the movie theater.  If  you know Allyson, you know that may not have been the best idea because she does not like loud noises.  She has a difficult time filtering noise, so lots of noise bothers her.  AMC West Olive movie theater had a special showing  of UP for families of kids with special needs (all kinds of special needs…Down syndrome, Tourettes Syndrome, Autism, etc) .  They kept the lights up a bit and the sound down a bit.  There were no trailers at the beginning, so they could begin the movie right away.  We could bring our own snacks as well.  We decided we’d go and give it a try.  If she didn’t like it, we leave.  We pretty much figured Benjamin would like it. 

I carried Ally in, and we found a seat.  She did not like it at first, but she wasn’t screaming and bolting for the door.  We had seats on the end (good thing), so Brad took her and let her do what she needed to do to get used to it.  She walked all he way to the top of the theater.  She and Brad sat there for at least half of the movie.  She’d put her hands over her ears when she needed to, and eventually they came down and sat with Benjamin and I.  (As we thought, Benjamin loved it.  He did GREAT!! He sat like a big boy and watched the entire movie.  He got a little antsy at the end, but that was fine.)  I can’t believe we all were able to stay and watch the whole movie!! Another break-through!  Thank you AMC theaters for allowing families like ours to enjoy a movie together without having to worry about being distracting.  

Today was the Down Syndrome Association annual Buddy Walk.  We got up and went to the Muny parking lot at Forest Park.  The kids got to run around a little bit, and we were able to participate in the walk as an entire family for the first time.  We were so glad to see how much this event has grown.  There were so many people there…such a great thing to see.  

Both kids were tired from the busy weekend.  

This week will be busy too.  Benjamin and I are going to the circus on Wednesday, we’re all going to the Magic House for a Friends of Kids with Cancer event on Thursday, and Friday, Brad and I are going out to dinner for our anniversary.  

We had a great time this past weekend.  We celebrated Korean Children’s Day with Benjamin at the Korean Presbyterian Church.  Each year the church sponsors this celebration.  It is really nice because we are able to mingle with other families who have adopted children from Korea.  The Korean members of the church do such a nice job hosting this event.  There’s always some sort of cultural presentation at the beginning of the day.  This year, a Korean Children’s Choir sang several children’s song in Korean.  It was so cute.  Next, there was a mask dance demonstration followed by a Tae Kwon Do demonstration.  Benjamin was fascinated by that!  I can’t wait for him to be old enough to try that.  -  After the opening, there are several activities for the kids ranging from calligraphy, to playing Korean drums, to creating paperdolls wearing traditional Korean dress.  After the activities, the church members treat us to a AWESOME lunch of traditional Korean food.  (Brad and I LOVE this part of the day!!)

Everything was going well until…Brad was holding Benjamin’s hand as they were walking.  Ben decided he was going to sit, and Brad’s immediate reaction was to pull him up.  Well, he heard a little pop, and that’s when Benjamin started to complain his arm hurt.

So a few hours late…We took Benjamin to the emergency room Saturday after lunch.  He kept holding onto his arm and complaining it was hurting.  We wanted to be sure it wasn’t broken.  - They ended up taking x-rays of his wrist because they thought it looked a little swollen.  (I thought it was just baby fat, but what do I know.)  Apparently I knew a little something because it wasn’t broken.  When the doc came in to see him, he and Ally were “fighting” over a chair.  Benjamin used both arms to pull himself up onto the chair.  At that point, the doc was broken (x-rays confirmed that as well).  He diagnosed him with Nurse Maid’s Elbow.  Apparently tendons and ligaments are stronger than bones in younger children.  The bones in his elbow did separate (the reason Brad heard a little pop) and the tendon got caught between the bones.  That was causing the pain.  (This is not an uncommon “injury” in children this age.) Usually the doc pops the elbow to get the tendon to go back where it belongs, but that wasn’t necessary.  Benjamin probably did that himself by pulling himself up onto the chair.  After he’d done that, he was fine.  After an hour visit in the ER (honestly, we were surprised we were in and out that fast) he was happy as a clam, and so were we!

We had an eventful week this week!

Allyson’s wish granters paid us a visit Tuesday night.  They were very nice!  It is not official, but the wish Ally requested was to go to the Give Kids the World Village down in Orlando (http://www.gktw.org).  We all get to go and stay at the village, and while we are there, we get tickets to Disney World, Sea World, and I believe Universal Studios.  Ally loves animals, so a visit to the Animal Kingdom will be a favorite I’m sure.  She also wants to meet the princesses at the castle; I believe she offically requested to meet Ariel and Sleeping Beauty.

Brad is busy finding a new job.  He’s already had an interview, and the follow-up/second interview is this Thursday.  Other “feelers” are out as well.  We’re keeping our fingers crossed.

Ally and Benjamin are doing well.  Our friends, The Salmons, came over for a visit Saturday evening.  All of our kids had a great time playing with each other.  Ally was tired, so she was the first to crash out.  Sunday morning, we visited the castle playground again.  Ally and Ben love it there, so we try to go as much as we can…it is so close to our house.

Sunday evening, we went over to our friends, Josh and Cheryl’s, new house.  The kids had their first interactions with a cat.  Ben took to the cat right away.  He was sooo cute with her.  He’d get down on the floor and talk right at her.  Patches would roll over onto her side for Ben to pet her.  Ally wasn’t so sure at first, but after a while, she warmed up and love the cat too.  She spent lots of time with playing with the cat’s toys (and the cat!).  It was really cute.

Ally has another treatment this week - the extra-mega dose of chemo and a spinal tap.  Brad’s parents are coming in for Easter.  Busy, busy, busy!