Sunday, June 29, 2008

Progress by the handfuls

Elijah is making progress. He desires to experience more. Formerly, he would fold his arms and hands inward as toys would near him. Now, he reaches out and wants to fully enjoy anything he can. He laughs at his sister. She can just do a funny face and Elijah laughs, which of course makes everyone in the room laugh too.

Elijah is requiring frequent feedings overnight, which I hope signifies a growth spurt! But, it means David’s sleep is very disturbed and his days require napping to catch up. That is a strain on our family...especially Sophia.

Sophia and I spent this last week at the Elk River with my sister and her kids, my mom and dad, two of my aunts and their families. We had a blast. It was a great time for Sophia and me to spend quality time together. David and Eli managed the house in our absence and did a fine job.

In the last few months, I’ve found four families who have children similar to Eli. From London to Colorado, the children are doing well as they are much older than Eli. Their parents deeply understand our current struggles and give us hope for the future.

Elijah didn't make the cut for the Little Light House admission this upcoming school year. We are really disappointed by this, but feel certain it is in God's plan that he be home full time another year.

Thank you all for praying for Elijah. He has reached 12.5 pounds this week. He looks chunkier and less bony. Please keep praying:

  • Pray for Elijah to have a giant growth spurt and grow longer and heavier.
  • Pray Eli stays well for his surgery in September.
  • Pray that Eli’s therapy works and his development continues.
  • Pray he begins to say words and communicate with us more clearly.
  • Pray his skin heals and causes him no pain.
  • Pray his elbows stretch to full extension and that the pain involved is limited and tolerable.
  • Pray his legs grow and that his knees straighten in surgery without a problem.
  • Pray that Elijah’s skull and brain grow and develop normally and do not require additional surgery.
  • Pray that Elijah’s hearing and vision continue to improve. We’ve seen miracles here for sure.

Writing all of Elijah’s prayer requests make me realize all we are up against, but we continue to keep a spirit of hope and faith believing that all things are possible. Please pray for David and me to remain hopeful and positive as we face these challenges.

Keep praying for Stacie and Jeff Smith and their sweet Gavin. This week, my Aunt Janet’s (Stacie’s mom) beloved mother passed away. So much sadness for one family. We love you all.

Loving you all!

With gratitude,

Wednesday, June 18, 2008

Way to go, Melissa!

When I put my most recent post just minutes ago, I didn't even notice that my wife had posted yesterday! I wasn't even aware Elijah had gotten back up to 12 pounds!! You guys pray fast!

(NOTE: Melissa and I converse daily, about a range of topics, in loving tones. It must have slipped her mind... or maybe it slipped my ear.)

While we're thanking our new nurse, Kim, I'd like to say a special thanks to Cheri, the nurse who has taken such good care of our boy for the last year. Please pray for her this month as she addresses a medical issue from home, and that she enjoys a speedy recovery.

HAPPY BIRTHDAY, SOPHIA! Big party tomorrow! She is sooooo six.

O Elijah, Where Art Thou?

Tonight my family drove down the street to celebrate Father's Day for three fathers, including myself. Since I'm the biggest father in the room, I ate the most.

Elijah made the trip with us, and he did his best to mingle and woo the crowd. He was a little crabby, but for reasons that make us very happy. First of all, his new day nurse, Kim, is doing a great job with him. She got the routine down very quickly, and she's playing with him at all hours of the day. He only got one hour of sleep today, what with all the stretching, peek-a-booing, eating baby food by mouth and just sitting up for hours at a time.

The short and long is, we're enjoying a new phase in Eli's development, where he's able to tolerate all the things we were told to subject him to a year ago. His allergies are under control, he's eating well (holding food in better, for one thing), and he's getting back to a regular sleep schedule at night. So we're putting him through his paces, making him wear the arm braces to improve his elbow and wrist extension (both arms), making him wear his hearing aid, keeping him away from the TV as much as possible, and just basically having FUN with him.

When we got him home after the party, he passed out in minutes. I'm putting one last feeding in his tube, then I'm going to bed as well. I suppose this is what answered prayer feels like.

Thank you so much for continuing to pray for our little boy. Here are some points you can continue to lift up to Lord Jesus:

- We suspect he might have trouble absorbing food, as a result of his syndrome. We're going to speak with G.I. docs again next week, to see if calcium or iron supplements will help him start gaining weight at a faster rate. Remember, he was 13 pounds before the Jan. skull surgery. He's currently at 11 1/2 lbs. and holding.

- He's suffering a bit this week from a sore mickey button site. I suspect that's partly why he was grumpy tonight. Hopefully it's nothing serious, but that's what the prayer's for, right?

YAWN! It's bedtime, and I may actually get to go to bed! Wish me luck.

Tuesday, June 17, 2008

Eli makes it to 12 pounds...again

Dear Friends and Family,
Accept my apologies for not updating the blog more frequently. I have to admit that with Elijah every day is different and I wait for the really good days to post my update so as to appropriately color my perspective with a bit of rosy. This evening, Elijah is all smiles. His weight today topped the 12 pound mark again, which is great news. Elijah was switched back to the formula he started at 3 months old that I truly credit with saving his life at that time. From his birth until his GI doctor prescribed the elemental Neocate formula, Elijah starved. He was skin and bones and the photos from then are disturbing. After his GI nightmare the first few months of 08, his GI doc decided it was time to switch him to a more “normal” formula and thus he was on a soy-based product. You might remember how pleased I was at the thought of buying it at Wal Mart...well, we’re back on the UK-import Neocate as a result of his latest GI upset. I am hopeful that the return to Neocate will help Eli gain weight, again.

We have a new nurse who cares for Elijah in our home 5 days a week. She is a gem. Eli already loves her.

I have found another family with an 8-year-old child similar to Eli. They live in London. The father has given me a couple of tips to help Elijah’s bone strength, nutrient absorption and skin. I am looking into implementing his suggestions with Eli. Such a nice element to our journey to have a few we can lean on for tips and deep empathy.

I love you all. I thank God for the role you play in Eli’s life, whatever it may be.

More from me soon.

Sunday, June 1, 2008

Eli is home sweet home, again

Elijah is happily home from the hospital once again. He snuggled right into his own bed and fell asleep within 15 minutes of his arrival. He has such a difficult time sleeping at the hospital. He still has some lingering diarrhea, which we will monitor at home.

Specific Eli prayer requests:
Elijah’s GI bug completely disappear, soon.
Elijah gain weight, blow right past 12 pounds and reach 13 in record time.
Elijah stay well for the next 3 months as we work to beef him up for his surgery in Shreveport.
Pray that Elijah’s hearing and sight continue to improve.
Pray that David and I will make the choices that are best for Elijah’s long-term success.