Van Alexzander's

Well I know I said that I would update with pictures as soon as I was up and better from surgery, but we hit a snag. I had surgery August 1st, which was a healing time in itself that I didn't expect. But I started swelling in my stomach and having pain really bad and it was red and tender. We were having a yard sale fundraiser at the time and I just struggled through the day. After the yard sale was over, which was a success and we made close to 400.00 which will cover the co-payment for his MRA (horray!) I made it home where I took my temperature and it was 100.1 which is really high for me because I usually dont run fevers so charlie decided we should go to the hospital. Good thing we did, I had a Staph infection in my wound and it was really bad. I stayed alittle over a week in the hospital. I am back home now, but with the assistance of nurses that come out to my mother's home which is where I stay during the day so she can help with kids. I have a hole in my stomach that they left open about the size of a golf ball, which is alot better because i could have fit a tennis ball in there at the hospital. The nurses come out and pack it with gauze every day and taught charlie how to do it at night. So I havent been able to get the CMTC meeting pictures posted yet. But I will soon. I promise. I just need a bit more time. The pictures are on my home computer and I am staying with my mom. Anyway, I hope everyone has had a great summer and is doing well. God Bless you all. Thank you to Ryan Gault which loaned us his property and much needed help for the yard sale for Van. I appreciate all his kindness and Linwood Gault as well. As always I couldn't hold it all together without the support and kindness of my sister Catherine, My husband charlie and my mother Rita and Step father Siggi. Thank you all so much!

Van is doing pretty good. His Girth difference in his legs is 3cm and the LLD has gotten smaller and is only 1cm difference now. At this time we will not use a shoe lift but the doctors will recheck every 6 months for changes. He is cutting 4 teeth right now and is running and playing he loves to play with Hunter and Kirsten and loves music and soccer. You should see him kick the ball its so great!!

I guess thats about it. Thank you everyone for your support. We have made a commitment of going to the Netherlands in March of 2009. We have not raised enough money yet, but are hoping that we will be able to by that time.

If there is anyone that has any ideas for fundraisers they would like to share with us, please contact us at TheVanDowneyFund@aol.com Thanks again.

All our Love,

The Downey Family

Sorry it's been so long I have much to update. Lets step back a few to July 12th in which we travel to Maryland for a CMTC meeting. Van got to meet other CMTC familes as well as Lex from the Netherlands. We are very excited to be able to go to the Netherland even more now. We are still fundraising to make this possible. We got to meet in person some of our online family like Ed, Bec and their beautiful daughter Ellayna (Lizzy Grace) which story is on our friends page. We also spent time with Amber Jeff Hannah and David whose story is also on our friends page. I have many pictures from the event and will post them soon. I'm just doing a quick update due to the fact I just had surgery August 1st and am having a bit of trouble recovering. The surgery was alot more complicated than they thought. It was suppose to be a hernia repair. But when they opened me the doctor said my abdomen wall looked like swiss cheese and had upwards of 4 hernias. All hernias were repaired but do to the weakness of my abdomen a full mesh plate was installed in the abdomen to reinforce the repairs in hopes that it wouldnt tear again. Because the mesh they placed in was so large a full incision above the belly button was made. So it wasnt able to be done by lazers. So what was suppose to be a fairly easy surgery turned into a major one and I'm trying to recover. Once I have recovered I will surely post new photos of the kids and the CMTC meeting photos.

On another note: August 16th we will be holding a yard sale to benefit the Van Downey Medical Fund. If you live locally and would like to donate items to the sale, please call us at 804 201 3208 We are located in King William County.

I would like to also mention that our friends Calvin and Leanne have a beautiful Son named Blake, Blake has been diagnosed with MD and they are holding a carnival Benefit at Collose Baptist Church Sunday 17th 2008. All donations will be donating to finding a cure for this condition. Please come out and support their family.

Thanks everyone and I will update more soon.

Lisa Downey

Van had surgery June 30th to repair the inguinal hernia and to repair the circumcision that had reconnected. The surgery went very well. It was a good thing that we had it done that day as the intestines were staying down in the right testicle and been causing him some pain. The first day home he slept alot and he was very clingy and upset most of the day when he was awake. He seemed to have nightmares during the night and woke up crying until we brought him to bed with us and he seemed to do much better the rest of the night. On Tuesday he started to getting back to normal walking with a slight limp and seemed to have some discomfort when walking and getting up from places as the day went one we noticed that he was very clingy and wouldnt let us really out of his site but seemed to be doing better physically. This morning he woke up with a bang and really have been better than he has been in the last 3 weeks it really has become apparent that he has been effected and in pain from the hernia for awhile and explains why he has been really not acting like himself. But he isn't slowing down anytime soon. He has hit a stride. He got up at 6:30am and has not slowed down not even for a nap as we speak right now at 9:30pm he is still rocking and rolling. So to answer everyones question, yeah he is doing much better. He is a trooper ya know. He is just so amazing and so strong emotionally he never lets anything get him down. I admire him so much. He is just a true gift from god. Speaking of god and his help thank you everyone for all of your prayers. May god bless you all.

Lisa, Charlie, Hunter Kirsten and SUPER VAN!!

Hey Guys, First I'll give you an update on the Shoe lift. Because Van is walking, they are going to put off getting the lift. The insurance will not cover the lift until age three. But the doctor said that it may be needed before. we will keep tract of the difference and if he becomes really unstable or the difference gets greater than 2 cm then they will recommend a lift until then they said to just let him learn to walk with his disability.

Next update. Van has a problem with his penis as some of you already know. The penis grew back together after the circumcision. Since you have to be put under general anesthesia they decided that it would be best to wait until age two and he was able to handle the anesthesia better and it wasnt a pressing matter and probably wouldnt cause problems until puberity.

But....as it is never dull in the Downey House. Van was at the emergancy room this weekend. we noticed a large growth in the right testicle it was hard and larger than a large egg and oval shaped.

after evaluation at the hospital they relized that Van's intestines filled with Bile had droped through an opening in the abdomen and into his testicles. While this is a serious problem that requires surgery we were honestly releived to know that it was not cancer as with his conditions he is at greater risk for.

Van will have surgery June 30th to correct the opening which will be performed like an inguinal hernia repair they will also repair his penis at the same time since he is going to be put under anesthesia for the hernia surgery they are going to do both at the same time.

It is a risk that the intestines may get stuck or strangled by the opening and they will have to perform surgery before that date, signs of us knowing this is going on is if he is vomiting or we cant push the hernia back in through the opening. But if that doesnt happen surgery will be on June 30th which is the first opening that the surgeon had.

Anyway that is the update so far. Thank you everyone for your support.

Lisa Charlie Hunter Kirsten & Van the Man!

Appt. For Friday is set to evaluate Van's LLD at this time we will be told if he needs a lift for his left foot. As of the last appt. his LLD was 1.5 cm which would require a lift. We have been told by others in our situation that they don't like giving lifts at his age and like to wait until he is older as the LLD may change over time and so would the need for more or less of a lift. We will just have to see what the doctor says on Friday. We will keep you posted.

Last week I was admited again into the hospital because I lost to much blood and was anemic. Other than being tired which they said was normal while i regenerate my blood. Im doing much better and I am back home. Thank you to everyone for your thoughts and prayers for us. I really believe that is what gets us through all these challenges one after another.

Thank you to Krystal Johnston and Family and Terry Bush for making us dinners while I was in the hospital. It was very helpful to our family. Nothing warms your heart like a warm meal.

Thank you to my family at the Downey Danes Group, you have been so supportive to me and have a way of keeping my spirits up and pushing forward.

Love to all of you

The Downey Family

Well I guess that is about it

Hello Everyone,

I know it has been awhile since the last update. I had my surgery and am home now and starting to feel more like myself although I am still on lifting retriction so can't pick up Van yet, so until them it wont be back to normal again. They ended up having to remove 8 inches of my lower intestines and while in there found and removed a baseball size growth from my intestines. It tested non-cancerous so thats great news. It was one of the the most painful things I have ever done, being away from my family was the hardest, but we are all back together now horray!

Colosse Baptist Church Held a wonderful Concert in honor of Van and another young man in a coma as a fundraiser. The Concert was Beautiful and everyone sang so wonderful. Because of everyone's kindness Van is one step closer to being able to be evaluated by the specialist in the Netherlands. I really think we may actually get him there now. For so long it seemed so far out of the reach, but it has really been amazing how everyone has embraced our family and helped us get the medical attention that he needs as well as start to save for his trip for medical evaluation.

I would also like to note a wonderful man named Van York (what a great name huh lol) Van York has raised 1,200.00 for Van. We are so grateful for his kindness. He has just been amazing. We would also like to thank all the businesses and people that gave money to Van York to help out our little guy, Thank you from the bottom of our heart.

May 2nd was Van's Birthday. He turned the BIG 1 YEAR OLD!! Congratulation Big Guy!! Van is starting to walk now, he is a bit unstable but is making great steps and strides. I truley beleive once he gets his shoe lift he will be unstoppable.

Thank you everyone for all your thoughts and prayers for our whole family. God Bless you all.

Lisa

Hey Guys,

Sorry so long since the last update. I have been feeling under the weather. On April 1st I will be having a section of my intestines removed so Not sure after that how many updates will be made for awhile, but I will do my best. As always you can email us at TheVanDowneyFund@aol.com and someone will be checking that email to keep you updated on any questions you may have.

Since we last updated Van has turned 10 months old. He is Crawling well. Sometimes on his knees but mostly army crawls. He has started to pull up on the crib and coffee table and using it to shuffle along aside it. This is a very good sign that his difference in his legs might not hold him back to much for walking, but that is kinda a wait and see thing. Im sure when he gets his lift for his shoe for the shorter leg it will make a major difference in his balance. We probably wont be able to keep up with him then.

Some medical updates include, Van's rash has healed. Horray. If he is on carpet then he will break out temporarily but we now have a cream that usually knocks it right out.

He had his Baruim enema and excluded him having hirschsprung's disease, so Another good sign. But he does have Atrophy of the left intestines which is why he is having trouble passing his stool. The doctor recommended Milk of Magenesa twice a day and it has been working wonderfully. We follow up with him in 30 days.

He also had his cancer scan of the abdomen which we have not yet recieved the results of, but will update when we do.

We also had an MRI of the Brain with and without contrast which showed a difference in the left and right side of the brain. Doctors are not sure if the left side of the brain is Atrophy or the right side of the brain is hypertrophy. Which means which one is bigger than normal or is the other smaller than normal. Vascular Anomolies are also present but in Mild form.

Van is turning 1 in a couple months on May 2nd. At that time we will be visiting the orthopedic and discuss what to do about his lift in his shoe. Some doctors feel it is important for him to learn to walk without the lift in his shoe and learn to use his disablity and some beleive to use the lift for stablility until he masters the steps and then he will learn. So im interested to hear his point of view on what he thinks is best.

I guess thats about it for now. I will be adding some pictures from his doctors visits and fun pictures in the next few days on the photo pages. So check back often, or you can join the email list on the home page (no one will see your address but me) and you will recieve an email everytime the website is updated.

All our love,

Lisa, Charlie, Van, Kirsten & Hunter

I forgot to mention, we dont have carpet, we have all hard wood floors, this is why the problem didn't present itself before.

Lisa & Van

The Dermatologist (Dr. Shinn) confirmed that Van has eczema. More precisely Allergic Contact Dermatitis. No its not contagious but rather a rash mild to severe in Van's case this time was severe brought on by an allergic reaction to something. What is he allergic to?? Carpet, great huh? Berber Carpet especially. Which unfortunally is what most people are turning to because of it's high durablility for wear and tear. I went to visit my aunt Pat because she is leaving soon to go back to west Virginia, Also visiting with Uncle Roger and Aunt Linda whom she is staying with. They have carpet. Well, it confirmed the doctor was right. 15 min into him being there on the carpet he flushed a rash so bad in the face. So thats that I guess. Good to know the Doctor is right, and to know exactly what it is. That helps us to resolve the situation. Because of the Carpet allergy, the Doctor also stated that he could have allergeries to certain fabrics as well, such as sweater material and such. So we will just have to watch. The biggest challenge is going to be when I go into surgery in a few weeks and he will be staying with my mom again which has berber carpet. But she is willing to do anything she can to help him out. She is very good with him and we know she will give him the best care. now that we know what it is, it is easier to fix.