Thursday, April 30, 2009

The latest with the Ramiri

David is ill.
Melissa caught it.
Eli has it.
Sophia's dodging it. Not an easy task, to say the least.
Sophia is singing a solo in her school talent show. She is 6. Singing a song from HSM 1. Two of her classmates "tried out" for the show. Their acts were both telling jokes.
Eli has a new bump on his arm with the rod that we noticed about bedtime last night. It alarmed us. David and Eli made a trip to the ER last night just to check it out. They released him. X-rays are on the fed ex truck to the Shriner's Hospital in Shreveport for the expert check.
Eli's surgical plans: he will have one thumb worked on, then the other, then his feet removal, then his leg that order. First of the list likely in August, maybe earlier.
Eli's favorite words: Eah (Sophia), paci, daddy, out (to go outside) and go.
Eli loves to take walks in his stroller. He loves to be outside. I am glad for that.
Eli still doesn't have glasses, but we are working on it.
No word on the electric "wheel" chair. Will follow up on that.
Eli got a hair cut a few weeks cute.

Keep praying:
Wellness for the Ramiri family. We are weary.
Eli remains infection free and gets to keep that rod till the next surgery. Complete surgical success.
Peace in our family.

I love you all,

Saturday, April 25, 2009

Eli is home

Eli was released from the hospital yesterday evening. His infection was on his skin only and not inside his arm, which is very, very good news. The rod is still in place. His arm looks awful, but we are treating it at home, which is more comfortable for all of us.

Luckily, Granna was here to help. Thanks to Aunt Lesli and Grandma Bobbie too for their help.

Happy 80 Grandma Bobbie!!!

We are well, for now.

Love you all,

Thursday, April 23, 2009

Not Again

Sophia's right on comment this morning when I told her Eli was in the hospital, "Not again." Unfortunately, Eli's arm became bright red, swollen and painful yesterday evening which led to an ER visit and admittance to Saint Francis Children's Hospital. The whole thing is highly suspect of the last time Eli's other arm became infected. I'll keep you posted as we get test results and physician opinions today.

Please pray:
  • the infection heals
  • if the rod must come out after only six weeks, pray that the centralization worked quickly and will need no additional procedures
  • no medication side affects
  • wisdom for the docs and compassion for the nurses

Love you all,

Wednesday, April 22, 2009

Home Again

Eli and David made it home in good time yesterday. Elijah has a splint to replace his cast. He also has a thumb repositioning surgery scheduled for August, which will likely push back his feet removal surgery a few months so he has time to heal and recharge between.

Love to all,

Monday, April 20, 2009

Doctor's recommendation

Today, I am very, very sad. Even though I expected the recommendation made today by Dr. Gates, the future is difficult to face. Elijah is scheduled to have his feet removed in October.

Two days ago, Sophia drew a picture of someone standing. She drew only feet, legs and hands and arms hanging down. The rest of the person was off the page. I asked her what she had drawn and she wrote "Eli wen he gros up." It brought tears to my eyes. I am not looking forward to explaining why mommy and daddy would let a doctor remove Eli's precious feet.

I will miss Eli's feet. When I pick him up from his crib, he always brings Clifford the dog along dangling between his feet. Eli has very talented feet. He uses them to manipulate his toys and brings them to his tummy when he's being tickled as he laughs and laughs.

The fact remains that Elijah's feet do not help Eli walk, so they must go. Several months after the feet removal surgery, he will have surgery to straighten his legs. This will require the removal of a chunk of bone in order to make the blood vessels and nerves stretch to go straight. The doctor will give Elijah as much length as he can. Then, after healing, Elijah will begin working with prosthetics.

Eli doesn't have growth plates in his leg bones around the knee. The doc said today that he does not see growth plates in Elijah's lower legs at all, which means they will not grow longer. He does have a growth plate in his upper leg near the hip area, but that growth plate doesn't do much growing. His bones will grow larger around as that is a different type of growing.

One question we had today was for suggestions for mobility solutions for Elijah now. The doctor recommended a child's battery-operated car (think pink Barbie car for a 2-year-old child, but they have lots of boy options too) with alterations to be operated with a joystick. I can imagine Elijah's big smile as he steers himself all over the backyard. This will mean David and I will work to find someone who can fit one of these cars with the joystick. Anyone ever heard of such a thing?

You may be wondering about Elijah's electric chair. I am too. I will check on that tomorrow, but I am assuming insurance resistance to issuing such an expensive chair to a 2-year-old kid. I bet Eli would like the retrofitted electric car instead. That would rock!

Tomorrow, Eli will see the hand surgeon, have his cast removed, a splint made and get a date for his next procedure to move his thumb to a more functional position.

I thank you for your prayers and concern for us as we continue through this journey.

With love and gratitude,

Sunday, April 19, 2009

Driving today

Please pray especially for David and Eli today. They are on a van on their way to Shreveport with three other families. David was against riding in the van from the beginning because he has a tendency to get car sick and he is worried the temperature won't be pleasing for Eli if there are so many other people to keep happy. So, he showed up this morning to find that this ride will include four families and the driver called in sick. He really, really didn't want to ride the van, but Eli requires so much attention that we didn't feel comfortable with just one of us driving and Eli riding and I couldn't go this time.

Eli will see the leg doctor tomorrow and the hand doctor on Tuesday and then return home on another van.

Love you all,

Sunday, April 12, 2009

Fight for Sight

Elijah's vision has been a roller coaster ride emotionally for Dave and me. After Elijah's birth and subsequent 11 day stay in the NICU at Saint Francis, the nurses told us that every child who stays in the NICU is referred to an opthamologist. The opthamologist generally visited the kids in the NICU one day a week and since Eli made his grand entrance two days before Christmas the opthamologist wouldn't be visiting the NICU during Eli's 11-day stay. So, we left the NICU with instructions to see Dr. Groves. Being responsible for setting Eli's appointments, I immediately set one with Dr. Groves. Seemed like a routine kind of thing. Not a big deal.

Well, when the day came around for Eli's appointment, it happened to be the day after his g-tube placement surgery and he was in PICU on a ventilator. I'm a very multi-tasking person plus I realized if doctors saw Eli in the hospital, I didn't have to pay a co-payment, so I called the opthamologist's office to see if the good doctor would see Eli in the PICU instead of in his office and he agreed. David was on his shift when Dr. Groves arrived. Eli's eyes were dilated and ready for examination.

David calls me with the report and his first words are "are you sitting down?" Now, my dear husband has a flair for the dramatic. But asking me to sit down, I knew that was big. Plus, my kid was in the PICU...geez. So, David tells me that Dr. Groves reported "Hummm, I've never seen that before," upon Eli's exam. Trust me, even at 4 weeks old, we'd heard this statement more than we wanted. He reported a paleness and white spots on Elijah's retinas. He left saying he would have to do some research.

We followed up in his office a month later and Dr. Groves gave us good news saying that his eyes looked like a different kid, but that he didn't expect Eli would be able to see very well at all. He referred us to the specialists at Dean McGee in OKC.

I vividly remember pulling into the parking lot at Dean McGee for Eli's appointment and praying "God, I beg you for Elijah's sight, I beg you." We went in to see a specialist who referred us for an eye test involving putting wires across Elijah's eye balls and flashing lights in his face. The results were dismal. The doctor told us that "unfortunately, Elijah's retinas didn't respond to the light." David and I were dumbfounded. David said "But he tracks" and the doctor snapped "I didn't say he was blind." It was by far one of the worst experiences we've had with so-called specialists. Certainly to the unknowing, being told your kid's retinas didn't "respond" sure sounds like blindness or close to it. The doctor continued and told us we'd just have to wait and see if his vision improved any or stayed at its current level. He also told us that it is different for a child born blind because they know no different.

A few weeks later, the doctor sent his report to our local Sooner Start vision representative diagnosing Elijah with a syndrome that causes blindness and mental retardation. The Sooner Start representative brought me the diagnosis.

I spoke to Elijah's geneticist who said it would be VERY rare for Eli to have two genetic syndromes and OF COURSE this blind syndrome had nothing to do with legs, arms, head, etc. It was this experience that I started realizing that I leave the genetic diagnosis to our geneticist only. Now, if I could just get that across to the EYE docs, and the RESIDENTS, and the surgeons, and the GI docs. They have all given us their opinion of what underlying issue Eli has causing all of his problems. Like they wanted to be the one to solve the mystery.

So, we left Dean McGee with a completely awful prospect for Elijah's vision. Now, remember that at the same time, we were being told he had significant hearing loss as well making the blow even tougher.

The months went on and we decided to avoid eye doctors for a while. Their test results and opinions didn't measure up to what Elijah seemed able to see. We decided we'd let him develop instead of listening to the specialists.

This last week, we returned to Dr. Groves' office for an appointment. The absolutely wonderful news is he can definitely see (I didn't need Dr. Groves to tell me that). He has one very good eye and one not so great eye. He needs glasses.

The news of glasses was really hard for David to swallow. He wants Eli to get to live device free for as long as possible. We forced leg casts, leg braces, hearing aid, feeding tubes, gas release bags and IV poles on our kid for SO long, but lately, he's had little devices...just a feeding tube for feedings five times a day, casts and splints. Okay, writing this down, Eli's been a device kind of kid his whole life. And, it's just going to get worse.

Every time we get news on Elijah, one of us is okay and one of us is not. The glasses thing (even if it seems minor to those of you who may have only glasses to deal with for your kid) was not okay with David, but for me, I'm excited to get to help Eli see even better. I rejoice constantly that he can see. My begging in the parking lot of Dean McGee was heard and answered.

I can tell you that Sophia is going to be jealous because she'll be the only Ramirez without glasses. For some reason, I just expect that one day she will need them, but for now, she is our device-free child and we are glad for that.

So, there is the very, very long eye story for Eli. The point being to bring you up to speed that our guy will be getting glasses in the coming weeks. Pray that we select the right type of glasses that will stay on Eli's cute head and that the glasses will make a remarkable difference in Elijah's sight.

Happy Easter! He is risen indeed!

Love you all!

Thursday, April 9, 2009

"How's Little Eli doing?"

Not sure why, but it seems more people than usual have been asking about Elijah the past few weeks. I don't like to ignore providence when it's jabbing me in the ribs, so I'll take a minute to give an overview of his various health issues. As always, pray as specifically as you can for Elijah's various ailments, say thanks for his successes, and accept our gratitude for continuing to lift him and his family up in prayer.

THE ARM: Elijah's wrist surgery went very well. We'll take him to Shreveport in two weeks to have the cast removed, then we'll visit again in 6 weeks to take the rod out. The rod is pressed up against the ulna and is keeping the surgically altered structure in place. You'll recall that when we operated on the other wrist, the rod became infected and had to be removed early. Elijah got very sick very quickly, but we aren't seeing anything like that this time around. We have reason to expect good things during this trip.

THE LEGS: It's been a point of frustration that Elijah's leg doctors have, uh, left much to be desired. Hopefully that will change during the visit in two weeks to Shreveport, when we meet with a doctor who is supposed to be one of the best. We assume that we're going to, at some point, amputate at the ankles and straighten the knees (which, currently fused, will not bend at all). But we've assumed before, and a new doctor always brings a new perspective. We'll keep you posted.

THE WEIGHT AND THE FEEDING: Melissa the Genius has been adding a jar of Stage 1 baby food to Elijah's tube feedings, and it's done wonders for his plumbing. He really does feel much better over all. We were concerned that the baby food might be missing nutrients compared to the formula (the hyper-synthetic NeoCate), because we had to reduce the 7-oz formula feed to 5-oz to make room for 2-oz of baby food. (Is there a mathmatician in the house?) Fortunately, Elijah's new pediatrician has assured us that we can as an extra scoop of powder formula to his feed and not cause any complications to Eli's tummy. We've been doing just that, and I'm pleased to report that Eli's really doing well. To recap: 5 oz. of formula but with an extra scoop of powder, plus a jar of food, 5 times a day. The kid is pushing 17 pounds and shows no signs of stopping. In addition, we gave him a new MICKEY button, and it's working great (reduced leaking).

COMMUNICATION: Elijah is speaking more than he ever has. He says "Daddy," "Momma," "Ee-ah" (Sophia), "Dora, backpack and map" (not that phrase, but the words). He wants to communicate better, and that's half the battle. Nevertheless, he's missing constanants, which means there's still a problem occurring somewhere either in his ears or his throat, likely his throat since we haven't gotten those muscles built up with regular oral feedings. We'll meet with a speech pathology clinic at the University of Tulsa, which was recommended to us by the magnificent therapists at the Little Lighthouse. These guys really know their stuff.

Come see us sometime! Don't bring anything but a smile.


Wednesday, April 1, 2009

Help the Red Cross today

Donate to the American Red Cross today! I'm personally raising $1,000 for the local Red Cross disaster response. Give up one meal out and donate an easy $25. Give up meals out for a month and donate $100. Help me get to my goal this week! Click my link hit "Donate Now." Let's make sure disaster victims have the help they need!

With gratitude,