Eli's Journey

Mark joined us today for Thanksgiving as a total surprise to all but John. He and Mark made our day. Happy Thanksgiving! Love to all, Melissa

I've included a pic with me in it...didn't want you to wonder if I'm really here. Sophia pics are a special shout out to favorite cousins Makayla and Daniel Reed. Note Elijah doing "rolll it up" in several pics. To those of you out there who questioned if my son could hear: when we say the world "roll," Elijah starts rolling it up with both hands rolling around each other. SO CUTE! Love you all.

It isn't just the season that makes me remember all of my blessings. I am constantly reminded of all I have to be thankful for. I recently listened to a powerful sermon series by Andy Stanley at North Point Community Church in Georgia titled "Why Worry?" Starting the series I was pretty sure I could give Mr. Stanley a pretty worthwhile list of answers to his question. But, listening to his series made me well aware of a wonderful new perspective. By remembering God's faithfulness, what do we have to worry about? The main point I took from his sermon is to do all we can today and not worry about tomorrow. He isn't saying that we can sit around and not work, not be smart or not use our God-given talents to prepare for our future. But, after we've done our part today, there is no reason to worry about tomorrow. We have to remember the God our parents taught us about, the God we taught our children about and the God who has seen us through the dark times IS the SA...

We are having a blast! Special thanks to our house sitters. Keep up the good work. And super special thanks to Red Sky Church Plant! (you know who you are) Love you all, Melissa

Eli's central line was removed yesterday. The doc asked for another round of blood work just to be sure and he put Eli on an oral antibiotic for two more weeks. He had a very low fever this morning. I'm praying for full health, no infection and feeling good (for all of us)! Love and gratitude, Melissa

Elijah and David made the trip to Shreveport on Monday to see Elijah's hand specialist on Tuesday. She says his wrist is fine and that another surgery is not necessary. Ya Hoo ! Plus, she is SURE there is no infection in his bone from his terrible bout with STREP. Hopefully this means that when we see Eli's infectious disease doc on Thursday he will take Eli off the IV antibiotic and we can get rid of that pesky central line coming out of his neck BEFORE we leave for Florida on Saturday. The doc also decided that due to the infection Elijah is not ready for his other wrist surgery in December. That has been postponed to March. For me and David, that is sad news. We want to get through these surgeries so that Elijah can start relearning to use his hands and arms. Plus, we have to get through the wrist surgeries so that we can then schedule the thumb repositioning on each hand (two more surgeries in Shreveport). Elijah deserves to be able to grasp things normally rather than the ...

We had fun! Sophia told this Santa that she wanted a Bratz car. I really am not sure what that is, but the Santa was sure to announce it loudly enough so that someone in the audience would hear. Elijah is doing well. Please pray he remains infection free so that we can go on our vacation as planned. We are all really looking forward to the trip. Love, Melissa

Elijah was discharged from the hospital this afternoon. He came home with his central line still in place with orders for a daily dose of high powered antibiotic for another three weeks. Elijah's infectious disease specialist (that's right, Eli now has an infectious disease specialist...not a doctor you particularly want to get) believes that we should treat Elijah as though his bone was impacted by the STREP infection. Normally, they would have done an MRI to determine if the bone was or was not infected at the beginning of such an ordeal, but since Eli had a metal rod in his arm, an MRI couldn't be done. So, we're treating worse case scenario. In my conversation with this disease doc, I mentioned my concern that this is the second time Eli has gone septic with an infection in his blood (first MRSA now STREP). He agreed that was unusual and worthy of further investigation. So, after we survive this ordeal, we will have a new doctor to see to evaluate Elijah for immune...

Elijah remains in the hospital today receiving IV antibiotics and recovering from yesterday's surgery to prematurely remove the rod in his left arm. Today, I am disappointed to see a more wobbly wrist than I had hoped. The rod was to stay in place until Elijah's bones had fused his wrist straight. That is not the case today. We have applied Eli's splint in hopes of maintaining the correction, but I just do not know if it will work. The docs at Shriners in Shreveport will be the final say next week when Dave and Eli make the trip. Eli is happy until any one in scrubs walks into the room, then he cries until they leave. I don't blame him. He's been through some rough stuff. He isn't sleeping well at night either. Sophia is down right ready for her dad to be home. She and he have a peculiar bedtime ritual that I just cannot fulfill for her. It involves throws, throw downs and walk aways (Sophia's names for the different stuff they do). All I do is read a book...

Elijah is out of surgery. The rod is out. Dr. Ranne and the docs at Shriners consulted to decide the rod must be removed for now. Please pray this doesn't mean another wrist centralization for Elijah's left arm. I think it could go either way. The Shriners would have preferred to have the rod remain another 3.5 weeks, but hopefully the fusing was complete before rod removal today. The Shriner's hope to see us in Shreveport next Tuesday. Eli will remain in the hospital with a central line (also placed today) receiving IV antibiotics. His abscess turned out to be STREP also and not staph. So, he had a STREP blood infection and STREP in the abscess near his elbow where the rod was. I just have to think this was all related, somehow. Today is a gloomy day in Tulsa. It is cloudy and rainy and I think it makes it harder for me to have a sunny outlook. I'm not sure how many times one set of parents can be expected to go through the routine of sending their kid to surgery,...

Eli will not be going to Shreveport today. The Shriner's docs are coordinating with the docs in Tulsa. The Shriner docs do not want the rod to come out today. The x-rays from Friday show the pin in perfect condition and if it comes out today the surgery will likely have to be redone. So, we're considering the options. The Shriners suggest clipping the part of the pin that is sticking out of his arm. Yikes! Please pray for complete healing in Eli's little body quickly with no further complications. Of course, pray that we do not have to do the surgery again. Love, Melissa

Elijah remains in the hospital at Saint Francis in Tulsa. He has STREP in his blood stream and STAPH in the abscess in his elbow, which has been lanced and drained. Eli is on heavy-duty antibiotic through an IV. This evening, we discovered the rod in his arm (placed early September to centralize his wrist) is STICKING OUT of his elbow. You read correctly, we can see the rod, people. So tomorrow we are either headed to Shreveport to have the Shriner docs remove the rod or we'll let the Shriner docs tell a Tulsa doc that he/she can remove the rod. Either way, Elijah is going to have his seventh or eighth surgery (I've lost count). We would really prefer to have the procedure performed in Tulsa, but we just want what's best for Elijah. Pretty scary stuff for our sweet Elijah, but we work through each new issue seeking the best possible solution for our son. We have great support in Tulsa. The long story for the weekend is that I had promised the BEST big sister in the world ...

First of all, the blood culture came back positive. That means Elijah has staph in his blood stream. Now the good news. The best way to treat his situation is with IV antibiotics, and he's been on the best available since Friday night. His fever is still absent, his attitude is great, and he doesn't seem to be in any danger. Also good news: We talked to the GI surgeons this morning, and they explained how to use his new feeding tube button so that he can burp. People, he burped for the first time this morning since last Thursday. That's alarming! So needless to say, he feels much better. Looks like that pin in his wrist is the culprit, both for the bloodstream infection as well as the abcess that was causing him so much pain on his elbow. (We lanced it, and Eli is very glad we did.) So it's Shreveport or bust on Monday. Pray for safe travel, and also, Eli will still have the IV in his foot during the trip (he needs 14 days of IV venkimyicon), so pray that we keep him co...

Friends and family, we could really use some heavy-duty prayer tonight. We brought little Elijah to the emergency room at Saint Francis this afternoon. His elbow is swollen and red, and the pin we placed in his arm is protruding a little. You will recall we straightened his wrist at the Shreveport (LA) Shriners Hospital a month ago, and the pin is keeping his wrist straight as he adjusts to the new bone structure. The first thing they found was that his white blood cell count is very high, which is a laymen's term for "He's sick." One of two things is probably going on. Either he's got a staph infection that's irritating his elbow and skin, related somehow to the pin getting out of place, or there's some actual blood poisoning going on. People, we DESPARATELY don't want it to be the latter. Pray pray pray PRAY tonight that Elijah can get through this quickly and with as little pain as possible. We're staying at the hospital over the weekend, with a...

Elijah's Mickey button is leaking and leaking and leaking. We had a horrible morning on Monday when Elijah's nurse discovered his Mickey button had popped out of his tummy leaving the exposed hole for part of the night. She and David rushed immediately to put in a new button, but Eli started non-stop, screaming. Not fussing, but screaming. The "I'm in PAIN" scream that I clearly differentiate from the I'm bored or I'm tired cry. It was frightening and I was just on the other end of the telephone. They rushed him to the surgeon's office where he was fitted with a new, larger button and the screaming stopped (an hour and a half after it began). Rough morning. But, since, his button has been leaking, which is a real problem because he is leaking important gastric juices necessary for proper digestion of his food and his calorie-containing food too. We'll be headed back to the doctor to seek a solution to this problem. Other than constantly leaking hi...

This photograph was taken before his latest hair cut, but isn't he just adorable! We recently purchased Elijah a new infant car seat. Yes, he is nearly 2, but his size is such that he requires continued use of an infant seat. The one we were using belonged to Sophia and had seen FAR better days. I feel much better taking him on six hour car rides now that he has a more comfortable and secure seat. He has also learned to scoot himself. My mom announced to me "You didn't tell me he could crawl." I was dumbfounded because I hadn't really seen it yet. Although I had heard from Eli's nurse that she had been working on crawling, I hadn't witnessed the magic. He lays on his side, pushes his legs forward and then moves the top of his body along with it. His technique is as unique as Eli himself, but he can fetch toys in his sight and that is a HUGE accomplishment for him. We are also working on his use of his electric chair. Going very well and now we get to convi...