Eli makes it to 12 pounds...again

By -
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.
Melissa

Comments

Angela Stevens said…
Thanks for the update. Eli is a constant part of our daily prayers and praises.

Love,

Angela and Nathan
June 17, 2008 at 8:18 PM
Diane Davies said…
That's great that you found someone who can relate to what you've been going through. Glad to hear Eli's gained weight again, that's awesome!
June 18, 2008 at 6:34 PM
Post a Comment

Popular posts from this blog

Elijah Will Be Represented at Boston Marathon 2014

By -
Our dear friends the Sperou family in Massachusetts recently asked if we'd be interested in seeing Elijah represented by a runner during the upcoming Boston Marathon in April 2014. Of course we said yes! What a fantastic opportunity, to know that someone has dedicated themselves to running 26.2 miles, thinking about Eli the entire time, working to raise money for children like Eli who are dealing with rare diseases. Kelsey Hoontis, our new superhero, is sponsoring Eli as part of an organization called "Running For Rare Diseases." They recently spoke with Christopher and Laurie Sperou about sponsoring their precious daughter, Shauna, who became a good friend of Eli's during our visit to the Rothmund-Thomsen Syndrome conference in Washington, D.C. Kelsey is one of three (for now) runners who will be representing RTS kids, and I'll tell you honestly, it feels so good to see Eli's syndrome garner more attention. We felt so alone in those early days when we had j
Read more

Tell us who you are

By -
Take a minute to sign into the blog, then reply to this post. Tell me, and everyone, who you are and what Elijah means to you. If you're the friend of a friend, then you're family now. Remember, the best blog strings go on for miles. As you view our list of friends, know that we keep each of you in our prayers just as you pray for Elijah. Dave
Read more

Seven...SEVEN!!

By -
Image
It's here. Eli's big day. Today, Eli turns 7 years old. The feelings and emotions I have for this day are overwhelming. It's been a long, long 7 years, but I can remember this day in 2006 like it was yesterday...and the months to follow. They are etched in my memory with Sharpie...never fading. Some of the memories, honestly, I wish I could erase. The hurtful ones. Some I've written about on this blog, but most I keep hidden. We hosted a birthday party for Eli on Saturday. He invited his entire regular class and his entire special needs class to his party. I began first thing in the day warning Eli that he might not have a lot of kids come. I wanted him to be prepared for the worst. Though Eli was confident his friends would come...I wasn't sure. When party time arrived, five precious kids came to celebrate Eli's birthday. I was relieved and Eli had a marvelous time with those five great kids. That same day, we had a family celebration where we all doted on El
Read more