"Defend the cause of the weak and fatherless; maintain the rights of the poor and oppressed."

Psalm 82 v 3

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Sunday, June 29, 2008

Update on Joseph's Heart Surgery !!!!!!!!!!!!!!!!!!!!!!!!!

Well, here it is:

Joseph WILL be having heart surgery, two of them in fact, and a pacemaker. The truth is Joseph's heart is weak and getting weaker. Joseph could go into heart failure at any time !! He has about 5 years (10 at best), and he won't survive childhood with his heart the way it is right now. Joseph is only 7. When we heard that his life expectancy is only 12 years old to 17 at best, that was scary. There is no way to know if his heart will even last that long. We pray his heart lasts another day and another day and another. He has chest pain on and off pretty much every day, even just touching his chest. VERY SCARY ! More and more often, he comes and stops playing and sits down next to me asking for a hug and says "My heart hurts." It is such a challenge with him being on activity restrictions. He is on medication to decrease the inflammation in his heart. We can't wait for a heart transplant because it is not a perfect solution either. First, they might not find a heart. Second, he would require lifelong antirejection medication. Third, even heart transplants can fail. Then, he would be out of luck. So, we have to do surgery. He is being referred to one of the few pediatric cardiology specialists in the country who knows how to do the surgery who lucky for us is up in Stanford in California. The heart surgery is extremely complex because not only do they have to do the procedure to fix his heart, but they also have to undo everything that was done in the first two surgeries. His surgery, being two of them, may probably require travel. We don't know. We are waiting for the specialist to review Joseph's medical records, so we can move on to the next step. So many steps.

Every morning, I make sure Joseph is still with us and breathing and ok. His heart gets so low when he sleeps. When he goes to sleep at night, we just don't know if he will wake up. We just don't know if it will be one day here, one day gone. We are just enjoying his presence every day.

Please join us in prayer for Joseph, for the heart surgeon, for the money for the heart surgery, for the money for the travel (probably), and for a speedy recovery. Mostly, we pray that when the time comes and the Lord does call him home to heaven (hopefully later rather than sooner), that angels carry him through those heavenly pearly gates into Jesus waiting arms to be with our Lord forever.

If you would like to help financially towards Joseph's surgery, we would be ever most grateful. You can click on the donate button at the bottom of the posts on our blog www.richardsonstudios.blogspot.com.

Prayers are always welcome ! We are praying for miracles here for our lively, affectionate, tenacious, lovable little boy.

Jennifer

Update on Michael

Michael is doing very very well with his Evan's Syndrome - at least the parts they know about it. His platelets are still normal, and so he is down to lab draws once a month and telephone conferences with at least one of the many many docs he sees. His lupus is mild. His heart is normal. His sun sensitivity has decreased the last few weeks, and so he is back to wearing normal clothes. At least he can go out with slightly less layers. We still have to be diligent with the sun screen. Anyone know where I can find the Neutragena Helioplex UVA UVB 85 ! I can't find it anywhere except commercials. Usually it is either long sleeves or long pants, but at least it can be one or the other. His extreme skin, touch, light, taste sensitivities also seem to be a little calmer (still there but not as loud). He is on some diet changes for his stomach but not anything major. One of them being to incorporate mangos and papaya and white grape juice into his diet (which is also slightly better). We are anticipating starting Growth Hormone shots in August, Neurology evaluation in September for the PVL and Hypoplasia, and finishing the Asperger's evaluation through Psychology in the next couple weeks. The specialists want to see the MRI films again as they are concerned about other midline brain problems. Cortisol is now NORMAL; it ended up being just suppressed because of the Prednisone, which he is now off. While he had ROP as an infant, he has no active retinopathy now. Again, yeah ! Overall, I am very glad to report much better. Still lots of doctor appointments, but hopefully they will continue to slow down.

Jennifer

Joshua

- his eye is all better !!!!!!!!!!!!! Yeah !! He saw the eye doc and got a clean bill of health.

Jennifer

Haircuts...

Even Gabriela got a home style. She really likes the Halle Berry look.

Ahhhhh.

Shawna saw my painted nails, and holding my fingers said "I like yo naiws. " So, here I am blowing Shawna's toes dry. Now she has pretty nails just like Mommy.
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HAIRCUT DAY !

Joseph

Joshua

Michael too.

Everyone had haircuts. Mom took a few lessons, and now does everyone's hair at home. Remember those long hair styles at Joseph's birthday. Don't they all look better.

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Special Moments -

Shawna and mommy having a special moment, and Shawna in new jammies.

Amazing how long hair grows when you don't cut it. The picture Joshua drew is pretty cool too.

I'm washing dishes ma.

Next, please. This is pretty fun.
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Birthday Pics...






Everyone had ice cream sundaes. A not so often treat.
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Birthday Pics...

Even dad had fun.

I just love this one of all the kids. Gabriela, Joshua, Michael, and Joshua with Shawna in the front.
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More Joseph Birthday Pics

Gabriela,

Michael,

Joseph,

and Joshua all had fun climbing around.
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More Joseph Birthday Pics

More playing, and

discovering, and

climbing, and

fun together.
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More of Joseph's Birthday Pics

Wow. Look, one more.

It's a case to carry it in.

Hello, hello. Spiderman?

Superhero Joseph here, 10-4.
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Saturday, June 28, 2008

More Joseph's Birthday Pics

Opening the rest of the gifts.

The kids were generous to give Joseph one of their games.

He was happy indeed.

Joseph says "Oh, look - it's mine."
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More Joseph's Birthday Pics

Opening more presents.

Ahhh, a game. Joseph knows what this is for.

Joseph was thrilled to receive Mom's old gameboy for for his birthday !

He said, "I wike Michael !" Michael has a gameboy, and Joseph asked to have one "Just wike Michael." We are still working on those L's.
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More of Joseph's Birthday Pics

Opening the presents - he had to wait to open this one.

Squeals of delight - Wolverine and Spiderman walkie talkies are the coolest. Thanks - Andrea, Rich, Owen and Reece.

More giggles of glee. Here Joseph is proudly showing his new toys.

Dad just being silly.
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I Will Be With You Wherever You Go

I WILL BE WITH YOU WHEREVER YOU GO !
"Be strong and courageous. Do not be terrified; Do not be discouraged, for the Lord your God will be with you wherever you go." Joshua 1:9


We have a heart for orphaned children, abandoned children, special needs children, parents of each of these children, adoption, Liberia, Ethiopia, Africa, and the Children in Need of Loving Homes around the World and our prayers are with each of them.

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