Tag Archives: Langerhans Cell Histiocytosis

Baby Elijah Update

About a year ago I had asked you all to pray for baby Elijah, who was born with a very rare disease, called Langerhans Cell Histiocytosis. I have updated you here and there over the past year, letting you know that he survived and is doing well.

I see them quite often at our church and have gotten to babysit the brothers here and there, although it’s been awhile since I’ve done that now, but these little boys are just precious! 

So anyway, here is the latest update on Elijah, from his mommy.

This shows his lungs, then and now.

Below she explains what the beads are about.

The fun part is the clinic nurses passed him around and he was all smiles. They gave him his Beads of Courage. Each bead represents a hospital treatment like a poke or a scan. It was really startling to see his journey as a bag-full of “events”. There were so many! Two of the beads represent 100 of something. Others, I know were short, such as his hospital stay beads, his “pokes” beads, and dressing change beads, etc. But still, it’s a remarkable picture to behold.”

Elijah is a sweet little guy and we are so blessed to know him and his family.

Thank you all for your prayers.

🙂

hi-d

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Baby Elijah Update

I just spent the day today, with Elijah’s brothers, while he and his mommy went up to Atlanta to get a CT Scan. We don’t know the results of the scan yet. They are looking to see if his lungs are healed enough to put a port in his chest to administer his chemo. The central line he has right now has become difficult for them to keep in good condition. He pulls at it, and it seems to always have a rash around it. Poor little dude.

Looking at Elijah, you wouldn’t know that he has anything wrong. He’s a happy little fellow, always quick to smile! I hope things look good enough for them to get this procedure done. It would ease up the stress on mom quite a bit and hopefully make him more comfortable.

Staying with Elijah’s big brothers is a joy for me. I just love those little guys. They remind me of my boys when they were toddlers. The cars, the books, the legos, the sippy cups, the peanut butter & jelly faces, Clifford the Big Red Dog, Thomas the Tank… etc. But most of all the snuggles! I love the snuggles!

Here are some photos that their mom (Amy) took of them a month or so ago.

 

🙂

hi-d

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My Visit to the NICU

Saturday, I had the pleasure of being able to hold, feed, change, cuddle and love on baby Elijah for a few hours.

His very tired mommy and daddy need some time with their other two little ones on the weekends, but being the good parents that they are, they don’t like baby Elijah being all alone up there in that hospital crib without any more attention than the nurses can divide among all the other babies in the NICU.

So… my Bible Study girlfriends and I have decided to take turns going up on the weekends to be with him.

He is such a happy little guy. Other than all the tubes and wires in and out of him (and his poka-dot scares) you wouldn’t even know anything was wrong with him! He was smiling and cooing during his wakeful moments and slept peacefully on my chest for his nap. He wares out rather quickly taking (his mamma’s) milk from a bottle, but what he doesn’t take himself they finish feeding him through the feeding tube.

Because of the Chemo that he’s received, I was told I had to ware gloves, a mask and a gown the whole time. However, I think they are just being very cautious with him. This disease is so rare that they have not had much experience with it. I smooched his cute little head through the mask anyway!

We are now just praying that his little lungs will heal and he can be sent home to live a normal life with his two big brothers and his wonderfully strong mommy and daddy!

 

Sweet dreams baby Elijah.

🙂

hi-d

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Baby Elijah Update

Our prayers are working and he is slowly showing signs of progress.

He is still being tube fed and still getting his chemo every week, but his little blistered body is healing up and he has enjoyed being held by his mamma and daddy quite a bit recently!

Thank you for all your prayers for this little guy. Please keep them up… they are being heard!

May God wrap his arms around this little family and give them courage, peace and comfort during this stressful time.

hi-d

 

 

 

 

 

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Baby Elijah Update

From his parents Amy & Brian:

“Elijah’s nurse said he had a pretty good night. He popped another temperature, and although the cultures have been negative, they are putting him on some antibiotics just in case. They are doing a urine culture to check for a UTI too. The nurse is alternating Morphine and Ativan so that he doesn’t get periods of sleep and crankiness and can stay more even. He’s starting off slowly with his tube feedings and his nurse was swabbing his mouth with some breastmilk so he could enjoy the taste (and I bet it will benefit his sores too). She is a real character. We can tell she LOVES babies. She talks and talks and coos to them and holds them and provides such loving attention.

The Hem/Onc doctors say we can expect Elijah’s sores to look worse after the first treatment before they look better. They recommend waiting until around the second dose of chemo before trying to extubate him, since his airway is so swollen and sore. They’ll probably put him on some prophylactic antibiotics next week because the treatment could leave his lungs prone to infection.

Little Elijah smiled for me this morning and that just made my day!”

Please keep up the prayers for this precious baby boy.

Thank you,

hi-d

 

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Baby Elijah Update

I know you are all praying for him, and I am encouraging you to keep  it up. He can use all you’ve got. Here is the latest update from his parents on Care Pages (at Childrens Hospital in Atlanta).

“Elijah had a busy morning. He had his bronchoscopy to get a peek at his airway, after which they were going to extubate him, since he was doing so well. They had a hard time getting good images of his throat because he was so gunky down there. They said the lower airway looks good, but the upper airway has lesions and swelling. They tried to extubate him and use a helium/oxygen mixture but he was working too hard and really retracting, so they re-intubated him. They are keeping him calm and comfortable with some Ativan and Morphine. He is doing a fair to good amount of breathing on his own over the ventilator, though when they relax him so much it goes down, naturally.

He looks like he has more spots on his head than he did before. They said his mouth and throat sores are bleeding, so they are going to check his clotting. The chemo drug, Vinblastine, although given in a low dose, sounds like it could be pretty caustic, so it’s possible that it’s causing the sores in his sensitive tissues. Now that he’s on the chemo, we have to make sure to wear gloves when changing his diapers, because it apparently comes out of his body still potent.

They are also trying to get a couple wounds in his armpit and groin area to heal up, since they don’t get much air. They are also trying to find a good cream to put on his body to keep his skin moisturized enough to keep him comfortable, but dry enough to promote healing of the sores.

Last night I printed out some pictures for his big brothers (3 and 22 mos). I used ones from when he had fewer tubes in him. I also printed pictures of his fingers, toes and the cute name card the nurses made for him. Both boys enjoyed the pictures. Ian said, “Come out of the picture, baby Elijah!” He spent a long time holding the photo to his chest, looking at it, hugging and kissing it. We talked about Elijah’s spots that he has inside and out, and the special “straw” he has to help him drink his milk, and the stickers that measure his heartbeats. I’d been scared to show them pictures, thinking it might scare them, but they didn’t seem phased. They seemed happy to see their new baby brother and hear about him. This morning, Ian taped the pictures up on the wall so he can look at his baby brother all day. Our hearts just melted to see him loving his new brother like that.”

 I just hurt so much for this little family. Please, please keep them lifted up in prayer.

Thank you,

hi-d

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Baby Elijah Update

Here are the words of his parents from their Care Pages update today.

“Last night Elijah’s platelets and red blood count dropped so he
was given a blood transfusion. He also started breathing less for
himself, so they increased his oxygen and ventilation. He just
received his PET scan and is currently receiving an MRI. We have
just signed the consent forms to begin chemotherapy.


The doctors say that out of all of the kids who acquire LCH 90%
survive. However, infants who have it this systemically the
survival rate is closer to 55%.”

Please continue to keep little Elijah in your prayers.

Thank you,

hi-d

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