Back in the Saddle Again!

I am right back in the saddle again after recovering for the last 7 weeks! Wink missed me alot! All my friends are happy I am riding again.

Today I had lots of fun riding again. My instructor is letting me do flatwork (that means I am not doing any jumping right now). So I practiced trotting, cantoring and going through cavelleti poles. It was lots of fun even though it was VERY hot today!

On monday our 4H group went to Colonial Downs Race Track. For those of you not from Virginia, it is a horse racing track. With my dad's help we bet money on some races and had lots of fun. One of the races was named after our 4H group- Hunter's Gate 4H. All of us got to go down to the winner's circle, and we got to meet the winning jockey! It was great! I (well, really my dad!) won $37 for the night. I am saving it to help me buy a saddle of my own.

It was soooooo nice to ride again!

Having fun with Minnie

Alia is having lots of fun at the barn. Ellen owns Minnie, a cute 28 year old miniature horse. She thought (because of a wonderful suggestion from Vickie) that Alia might have fun recouperating from her surgery by helping take care of Minnie. So Alia has been going out the the barn several times a week to brush Minnie, clean her hooves, give Minnie a little excercise, and put glitter in her mane! Alia has learned that Minnie can shake hands (or is it hooves?)! Alia is 53 ½ inches tall, so that will give you an idea of how small Minnie is.

Alia's Aunt Beth took her out to the barn today and took this nice picture of the two of them. Aunt Beth is up from Georgia for the week to help Alia's parents get to work full days for awhile. Their bosses appreciate it!

Alia goes back to the barn

Alia had her best day since her surgery as Mom and Dad finally let her go back to visit Hunter Lane stables to be with all of her friends again (the two footed and four footed kinds). She got to see Rachel, Katelyn, Maggie, Katherine, Shannon, Savannah, Lachelle, Connie, and little Ashley; plus of course all the horses! She had fun feeding Wink and Minnie treats. She now has to wait until August 9th to actually ride again. "That's going to be like FOREVER Dad!"

Thanks for everyone's cards and emails of support- She really likes them!

I am putting up a photo of Alia feeding Wink some treats- Both of them were happy to see each other again!

Has It Really Been Two Weeks?

July 8, 2007
Two weeks ago today, we were settling down at the Charlottesville Ronald McDonald House and anticipating a long Monday because of Alia's scheduled surgery. While we prayed for good results, we never expected her recovery to be as smooth and uneventful as it has actually been!

We keep talking about how remarkable her recovery has been ... to which Alia finally piped up with, "Why does everyone keep talking about how 'amazing' this is?"

How do you really explain to a 10-year-old that from an adult perspective -- and from those adults we know who have expereinced the type of surgery Alia has had -- that they (the adults) experience a lot more pain, move much more slowly, and take a lot longer to get to where she is now?

Our problem is trying to keep her from doing all the things she really wants to do right now!! We have to laugh at the discharge instructions they gave us- they clearly state- "child may resume her usual home schedule." Of course that line is immediately followed with "Child must avoid any activity for 6 weeks that may place her at risk of falling- this includes swings, skating, bike riding, jungle gyms, any contact sports, etc." They penciled in "especially no horse back riding." To this Alia rolls her eyes and says- "that's like my whole life!" So her normal home schedule is very boring right now, and she is frustrated.

Her only complaints have been when she sneezes, when she tries to go to sleep (her preferred sleeping position is on her stomach), and when she just came down with the hiccups.

As part of her daily recouperation routine, Alia takes a walk in the neighborhood, down the street to Crestwood Elementary School, around the school grounds and back home.

After seeing ripened blackberries yesterday, Alia made plans and talked all last night and all day today about going back and picking lots of blackberries. Her enthusiasm was so high that she was nearly bursting at the seams to go no later than 4:15 this afternoon.

While we had a good time and brought home at least a pint of blackberries, she has wisely decided that an evening time would probably be better for blackberry picking. Too hot!

We do have some good news for Alia. Thursday makes it two weeks since Alia has been released from the hospital- and it means she is well enough to have visitors, and more importantly in her mind, it means she can go to the barn and see her friends and horses! Dad gets off work at noon on Thursday, and that afternoon he will take Alia to Hunter Lane to see everyone. Not a real long visit, but it should be the highlight of her day!

Celebrating Independence Day

July 4, 2007
Alia had her first post-op visit on Monday with the cardiologist here in Richmond. After her exam and an echo-cardiogram, the verdict was that everything is looking good -- exactly one week to the day of her surgery. The patch shows no leaks and the resuspension of her "valve leaf" indicates great improvement.

Today, Alia celebrates her 8th Fourth of July here in America! We are continuing our family tradition with a somewhat low-key day of hanging out together at home and will probably throw something on the grill later.

On July 4, 2000, Mark was recuperating from a stay at a Richmond hospital for renal problems attributed to our travels in Kazakhstan, and now Alia is recuperating from a stay at a Charlottesville hospital for heart problems.

As evidenced from the photos from her first Fourth of July, Alia continues to reveal her fiesty spirit and ability to adjust and adapt to any situation -- and manages to do so much easier than her parents!

That's definitely worth celebrating!

Sad News about Jaylyn Kenyon

Hi Everyone-

We had asked all of you to pray for the little girl Jaylyn Kenyon who was in the hospital the same time Alia was. I am pasting the obituary that ran in the Charlottesville paper today. Please keep Jaylyn's father, Jay, and his girlfriend Kim, and their families, in your prayers.



Jaylyn Susie Kenyon, age 3, of 972 Glencoe Avenue, passed away Friday evening, June 29, 2007, at the University of Virginia Medical Center.

Jaylyn was born January 27, 2004, in Charlottesville, daughter of Jay Kenyon of Waynesboro and Christina Harris of Lyndhurst.

She was sunshine and love; a bubbly, independent, active little girl who filled each minute of her three years with happiness and fun. She enjoyed music, singing, books, and playing on her swing set. Her two most favorite activities were playing with her best friend Matthew and going to Grandma's house. She was very smart and eager to learn. By the age of one, she had an extensive vocabulary in sign language, which she used to communicate until she was able to speak. She touched so many lives.

She was preceded in death by her paternal grandmother, Susie Lewis, and her great-grandmother, Johnnie Mae Lewis.

In addition to her father and mother, she is survived by her maternal grandparents, Steve and Martha Harris of Lyndhurst; her great-grandfather, Roger Bartley of Lyndhurst; her great-grandmother, Georgeann Lawhorn of Waynesboro; two great-great-grandmothers, Nina Bartley of Waynesboro, and Martha Drumheller of Franklin, Virginia; her great-uncle, David L. and great-aunt, Alice Harris of Waynesboro; her cousin, David B. Harris of Waynesboro; her uncles and aunts, Terry and Wendy Droppleman of Waynesboro, Paul Arnold and Robbi Long of Tahoma, California, and Bill and Marcia Arnold of Lewiston, Idaho; her uncle, Daniel Harris of Lyndhurst; and her special cousin and best friend, Matthew Droppleman.

The family would like to give special thanks to Dr. William Hammill and Dr. Michael McCulloch from the University of Virginia Medical Center, and Pat Fuzia, LPN, for their special care and dedication throughout Jaylyn's life.

A service will be conducted 2 p.m. Tuesday, July 3, 2007, at the White Hill Church of the Brethren, by Pastor Bill Cole. Burial will follow at the church cemetery.

Pallbearers will be Jay Kenyon, Steve Harris, Terry Droppleman, and Daniel Harris.

Honorary pallbearers will be Dr. William Hammill, Dr. Michael McCulloch, Paul Arnold, Bill Arnold, David L. Harris, and David B. Harris.

The family will receive friends from 7 until 8 p.m. at Reynolds Funeral Service of Waynesboro. Memorial contributions may be made to Operation Smile, 6435 Tidewater Drive, Norfolk, VA 23509.

This obituary may be viewed online at http://www.reynoldsfuneralservices.com//index.php?option=com_content&task=view&id=610&Itemid=46.

Published in the Daily Progress on 7/2/2007.

Blowing bubbles!

Saturday June 30-

Here is a photo of Alia doing one of the things her Dr. asked her to do- blowing bubbles! Really! Blowing bubbles helps increase her lung capacity to get it back to where it was before her surgery.

I wonder if Terry Bradbery had to blow bubbles too?
;-)

She is getting around ok, but says she is still sore and tired. She will be able to go places and see people around the middle of July. She said she will go crazy before then!

First Night at Home & First Day at Home

Friday, June 29, 2007

Although saying she didn't get any sleep last night, Alia slept pretty well considering she's used to sleeping on her stomach. She only got up three times: once to take some Ibuprofin, once for a pain pill and once ... you can probably figure that one out, because I don't want to embarass her!

Alia had her first shower since Monday this morning and seemed to enjoy it. I tried to be ever so gentle in helping her dry off, especially around her incision.

Because we hadn't had a chance to get my car inspected sooner (it would have expired tomorrow), we all had a little outing to our favorite automotive shop -- it's our favorite for two reasons: they specialize in Hondas, and more importantly, their greeter has been a friendly Italian greyhound named Lilly (we always enjoy comparing stories about our two "Iggies" Patches and Figaro). Today we got to meet the new one, Lilly's little sister, named Olive. Alia had a great time petting the both of them.

She also had a great time coming home and having our two sniff her up and down and probably wondering where she had been.

Alia spent the remainder of the day resting in front of the TV and snacking on carrots, cheese and crackers that were a part of one of the gift baskets she received at the hospital. She is distraught, however, that she can't do all the active things she is accustomed to doing; riding and being at the barn, playing frisbee, etc. She's already grown bored with reading, crafts, and other quiet things. Let us know if you have any ideas of fun ... but non-stressful activities.

Unless you see the steristrips near her neck and notice that she is slightly bent over when she walks, you would be amazed with her progress so far. She occasionally complains of some chest pain, but hey, who wouldn't after having major surgery on Monday!

We're Home!

Hard to believe, but true. We arrived home about 1pm this afternoon. Alia is tired but happy to be in familiar surroundings. We got to see Emily, who has been wonderful taking care of our dogs and cats while house-sitting. She couldn't believe Alia was home so soon either. We have follow up visits on Tuesday next week, where they will do more x-rays and echos to make sure the repairs are holding, but we think we see the very bright light at the end of the tunnel!

Alia's exit instructions say she can't ride horses for 6 weeks- so she is counting down the days! She can't get out with lots of people (public places, etc.) for 2 weeks so it will be awhile before some of you see her, but I promise when you do you will be amazed!

When we got home, there were presents waiting- one from our neighbor Virginia (a cute stuffed horse with a neat balloon!), and one from Uncle Wolfgang and Tante Nane (a very neat white horse with rider that looks a lot like Wink with Alia riding him!). There were also lots of cards and letters. Thank all of you very much! Alia will say more later, but she is still pretty tired- getting her beauty rest (as you can see from the photo!).

Time to go home?

After an uneventful night, the doctor told us that Alia appears to be doing well enough to go home today ... there is still a lot of work that needs to be done between now and then, but we are excited!

It's going to take a truck to bring home all the things Alia has accumlated in her short stay in Charlottesville: books from the Evans; a basket of goodies, games and activities from the Nesters; a prayer shawl from the Marandinas; a box of fun things from Mended Little Hearts; a stuffed pony and basket full of fruit and food hand-delivered last evening from all the folks at the Virginia Department of Education ... and all the cards and E-mail messages that have come to the hospital and the Ronald McDonald House.

Alia's BIG heart

Here is a photo of Alia using the heart pillow Aunt Beth sent her. Alia needs to hold it to her chest when she coughs. When she uses it it doesn't hurt so much to cough. Alia also has to blow bubbles 5 or 6 times a day to help get her lungs working well again.

Lots of you have been so nice sending us cards and emails! And yesterday we received a wonderful basket from Dan and Judy and Val- Alia LOVES the horse cards! Today we received a package from Aunt Carol and Uncle Joby with some neat Judy Blume books to read. And the nurse's station just brought a HUGE box from Mended Little Hearts in Richmond- full of wonderful things to help with Alia's recovery.

As she requested, I (Dad) brought salad up for Alia as soon as I could get some from the cafeteria. She loved it. Then they brought her lunch in and it was spaghetti- which she also loves, so she ate some more.

She also has had a full schedule of other activities. After her chest x-rays, she had an echo cardigram done (that hurt because they run the sensing device over her chest), an EKG of her heart, and a nurse came and took several blood samples. They have also removed all of her gauze bandages- leaving just steri-strips on her (well- she also has a port on her hand for medicine). So we spent some time using special pads that remove adhesive gunk. Alia says she feels a lot better without all the sticky stuff.

And Katelyn- Alia asks that you please tell all the girls at the barn that she wants to get back there as soon as possible to take care of Minnie- and to let all of you know she will come as soon as they let her!

Wednesday 9 a.m.: I want a salad!

Alia spent her first night in a regular room. She is doing extremely well and got up at least three times and helped me (Julie) get her and all her medical paraphernalia to the bathroom.

We know Alia is feeling much better because she begged Mark to go to the cafeteria last night to get her a salad. And before he left for the night, she made him promise that she would have a salad to eat sometime today.

This morning - starting shortly before 6 - was a flurry of activities as various doctors and nurses came in and out. We also were pleasantly surprised with an early visit from our pastor Travis Collins. Alia also took a trip down for chest X-rays.

Now at 9 a.m., Alia has just finished having her first solid food - some fresh fruit and yogurt. And she's making sure that we don't forget that she wants a salad.

There is a good possibility that Alia will be able to go home on Friday!!!!

Please keep Jaylyn Kenyon in your thoughts & prayers

Many of you have asked us privately about the other little girl and her family that we have met during our stay here. Her name is Jaylyn Kenyon, and I asked her father if it would be ok for me to let you know about her. Her father told us that she was born without any pulmonary artery- the artery that goes to the lungs to get oxygen. There are some smaller vessels that formed off of her aorta that are performing this function. The surgeons here are working to find a way to make what is there work better. The cath lab today did not have good news for them today, so we ask you to please keep her in your thoughts and prayers.

Thanks-

Mark and Julie

4pm Tuesday- Alia up walking!

I just came back from the Ronald McDonald house- and what do I see but Alia in her clothes! Julie said she had just finished walking down the hall. They have unhooked her central line (where the give medicine directly into her vein) and took out her catheter (which means now she has to get up to go to the bathroom).

She also seems to have figured out the remote control for the TV.

:-)

We feel so fortunate. We have met and befriended the father whose daughter bumped Alia's surgery from last Tuesday. They just took his daughter back to something called a cath lab- they are having lots of problems getting her heart to pump by itself, and it took 6 people all rolling carts and tables full of equipment to get her down the hall.

We on the other hand, have just been kicked out of the PICU and into a regular private room on the children's ward. Room 7144B. Alia has a big picture window view of the Blue Ridge Mountains, which she is missing right now as she is asleep. The walk was fairly taxing, and they have given her more pain medicine so she is sleepy.

Thanks for all your comments- keep them coming!

Mark and Julie

10:25am Tuesday

Alia has had a busy morning-

She was able to have ginger ale and a couple of bites of green Jello. She had some pain medicine, and then they removed the temporary pacemaker wires from her chest. They were about the size of spaghetti. And they also removed the large drainage tube from her chest. That caused a few ow-ow-ows. She just had a little more pain medicine and is resting. They took a chest X-Ray of her this morning and said she is doing really well. I am getting ready to get some rest and leave Julie in charge until this afternoon.

Thank all of you soooo much for your comments and emails! Mary Beth- Alia was happy to hear her puppies are doing OK. And Nick Marandina (and the Marandina family!) and the Perry family- thanks for your email cards! Very nice!

More later-

Mark and Julie

6:30am Tuesday morning

Alia spent a kind of bumpy night last night- waking up about every 45 minutes. From 3 to 5 she also had blood pressure problems (too high), but they have fixed that. She is resting comfortably now, and the resident Dr. said she was doing great. Dad needs some sleep too! Julie will come and take over for me sometime after 8 and let me get some rest. I am sure she will update the blog if she hears anything new.

She's in PICU!

Please forgive the delay of this post- I went back to the Ronald McDonald House and was unable to log on to their wifi for some reason. We got to go see Alia in the PICU around 4pm this afternoon. She is woozy, and has had a few problems throwing up, but is now resting comfortably (it is about 8:30pm as I type this).

She has been yakking to us and seems to be doing really well. It is obvious listening to her that she does not know what day it is (she even asked once when her surgery was- which of course she has already had!)

Thank all of you for your thoughts, prayers, and messages. They have been wonderful. She has already enjoyed a visit from Aunt Charlene and Uncle Duane. And Nick Marandina- we wanted you to know Alia loved the horse photo you sent!

Julie has gone to get something to eat and a good night's sleep. I will stay with Alia tonight and trade off with Julie in the morning. We'll keep you updated!

Mark and Julie

Almost 3pm-

And we still haven't heard from PICU that Alia has left surgery- so Julie and I are still stressing out waiting (especially since Dr. Peeler said at noon she would be brought to PICU within an hour).

Frustrating!

Great News!!!!!!

We just talked with Dr. Peeler, Alia's surgeon-

He told us he had finished fixing Alia's VSD (the hole in her ventricles), and almost more importantly, that he was able to significantly improve the performance of her aortic valve! They rate valve performance from 0 (no leak) to 4 (not working at all), and said she went from a 3 to a .8! Alia is still in surgery, but he said she will be brought to the PICU within an hour.

Thank all of you for your thoughts and prayers, and keep them coming. She will have to be weened off the respirator later tonight.

Mark & Julie

10:45 a.m.

Mark and I are still awaiting word from the OR. The social worker just came in and told us that she will have a private room on the seventh floor once she gets out of surgery. If she is off the respirator tonight, one of us can spend the night with her.

9:15am

We just received a call from the operating room nurse Judy Kilgore saying they had started the first part of Alia's surgery- where they put her on a heart bypass machine. Judy said this will take about an hour. She said Alia was doing great.

7:25am Monday morning

Hi-

It is Mark, otherwise known as "Alia's Dad.!

Julie (Alia's Mom) and I have just left Alia as they rolled her down to the Operating Room. She was a little bit woozy from some "yucky grape flavored stuff" they gave her, and was talking a mile a minute. We got here about 10 minutes to 6 to sign in- and Alia was grumbling she was hungry, thirsty, and sleepy. But after being in a room full of people for 5 minutes, she was back to being her bouncy, happy, talkative self!

They promised to give us updates throughout the day. We will keep you informed.

Mark and Julie

Sunday, June 24

Sunday, June 24, 2007
We have just arrived at the Ronald McDonald house and are very tired from our trip, plus we stayed up very late last night.

Yesterday my aunt and uncle came over and all 5 of us went to explore some property of theirs in Louisa County. We went hiking in the woods and saw a cute mini water fall. On the way to the property we saw lots of horses and some FAT cows. We also went to the Dairy Queen and I saw one of the old instructors from the stables where I ride.

I almost forgot to tell you that yesterday, June 23, was our Family Day!!!!!!!! The day I was adopted is what we call “Family Day.” (My mom also calls it Gotcha Day, because that’s the day they officially got me.) Seven years ago, my mom and dad went to court in Astana, Kazakstan, and the judge there told them that they were my “mamma and papa” … but I just call them Mom and Dad now.

After church today, we came home and soon got a phone call from the hospital saying that my surgery is scheduled for tomorrow (June 25). I’m supposed to be at the hospital by 6 o’clock in the morning(TOO EARLY FOR ME!!!!!!!)

I hope my surgery goes well and I hope it goes safely.

The picture is when I went to the beach for Memorial day.

Love, Alia

Today was a bad day...

Monday, June 18, 2007

Today was a bad day because the hospital told us that they canceled my surgery for tomorrow. We found this out when we were almost in Charlottesville.

There were some infants who needed surgery badly after they were born and that meant there wouldn’t be a bed for me in the intensive care unit tomorrow. They have rescheduled my surgery to be on Monday, June 25, but it could change again if more emergency surgeries happen this week and fill the beds again. There are only 12 beds.

Although my surgery is not going to be tomorrow, we were able to still do my pre-ops. This morning they did an EKG, an echo cardiogram, and X-rays. We had lunch in the hospital cafeteria and then went back for my blood work (they stuck a needle in my arm and IT HURT). They also took more images of my heart with the echo cardiogram machine.

We also talked about my surgery with Dr. Gutgesell and Dr. Peeler’s assistant whose name is Rebecca. We also took a tour of the place where I will be after my surgery. They told me that when I get to feeling better, I can go to the hospital school where the rule is you can only have fun. Since it is the summer time, they do crafts and cooking and other fun stuff. We looked for the resident bunny named Snowball … but we didn’t find her anywhere! (It’s a real bunny and stays at the hospital to cheer up the children there.)

I felt mad and upset and sad because I wanted to get my surgery over with. This change in my surgery date means we will have to change lots of things. We had to cancel and change our reservations at the Ronald McDonald House (we went there and I think it is a pretty neat place), and Mom and Dad had to make lots of phone calls to tell everyone that everything has changed, and they also had to talk to the people they work with and tell them that they would be at work part of this week because I don’t have any day care set up.

On a good note, this change might mean that I get to have another horseback riding lesson before my surgery! I know Wink is going to be SO HAPPY to see me again! (Dad put up a photo of Wink "laughing!")

Happy Father's Day

Sunday, June 17

HAPPY FATHER’S DAY TO ALL THOSE DADS OUT THERE!

We had a busy day today. First I gave my Dad his father’s day presents. I got to light the candles at the 8:00 and 11:00 services at church. In between we had breakfast. After church we took Dad to my favorite restaurant — Frank’s at Stony Point. We spent lots of time packing and getting ready for the big day.

We will leave Richmond tomorrow morning around 8:30 to drive to Charlottesville for my pre-op stuff and to get set up at the Ronald McDonald House. We will all be staying there on Monday night, and Mom and Dad have a room there for the rest of the time I’m in the hospital.

Many people have asked for the address of the Ronald McDonald House:
Ronald McDonald House of Charlottesville
300 9th St. SW
Charlottesville, VA 22903

My surgery will be on Tuesday at:
University of Virginia Children’s Hospital Heart Center
1215 Lee Street (Box 800386)
Charlottesville, VA 22908
434-924-2350 or 800-251-3627


Oh, by the way, I had a lot of fun at the 7th Annual Kazak Family Picnic at the Nesters’ house. The best part was the pony rides … and getting to see all my Kazak friends. There was also a petting zoo that had goats, sheep, guinea pigs, bunnies and a llama. We went swimming and also went on the water slide. The picture today is of all my friends at the picnic yesterday!

My surgery will be to fix a hole in my heart that I was born with. I’m going to let my Dad tell you exactly what they are going to do:

Alia was born with a VSD- a Ventricular Septal Defect. It basically means there is a hole in the wall that separates her two ventricles, the lower chambers of her heart. VSDs are the most common form of heart defect. However her specific type of VSD is not so common in the US. Hers is a conoseptal or supracristal VSD. This is most commonly found in Asians, which, of course, Alia is! The most common kind of VSD in the US is a hole the middle of the ventricle walls. These are more easily taken care of than Alia’s. Her hole is near the top of the ventricle walls- right below her aortic valve. The hole is causing one of her valve leaflets to sag down, so her aortic valve does not fully close and it leaks. If not treated, it will lead to the aortic valve not functioning, and it would have to be replaced. The surgeon will plug Alia’s hole, and also look to support her valve in such a way that either it will close and not leak, or it will not get progressively worse. Back to Alia-

I’ll write some more tomorrow.