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
Donations and Gifting
Sunday, June 29, 2008
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
Jennifer
Joshua
- his eye is all better !!!!!!!!!!!!! Yeah !! He saw the eye doc and got a clean bill of health.
Jennifer
Jennifer
Haircuts...
HAIRCUT DAY !
Birthday Pics...
Saturday, June 28, 2008
More Joseph's Birthday Pics
More of Joseph's Birthday Pics
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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
"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.