Thursday, February 7, 2008

Eli's Uniquenesses

Today, the nurse returned, David rested and Eli did his usual laughing and playing. We had a good day. David weighed Elijah yesterday and was so excited to report he passed the 13 pound mark. He’s been hovering in the 12th pound for weeks and weeks. Of course, we aren’t counting the weight of his new titanium plates and screws , we are just happy he’s in a new weight class.

The most exciting news to report since Elijah’s skull surgery is that he has stopped throwing up nearly completely. Before his surgery, we had become accustomed to the fact that Elijah will throw up about three times a day. For my sweet Eli throwing up means wretching until we open his feeding tube to release the pressure and let everything out. Then, we simply refeed his...well, you get the idea. Anyway, since his head surgery, he has only thrown up a few times, which is miraculous! When he doesn’t throw up, we keep him on his feeding schedule, which is essential to his weight gain. We plan to try his mechanical swing again and see how he likes it. Before, I’ve been concerned about doing anything that might jostle his delicate intestine. Please pray his “no throw up” continues.

I know that some of you are new to the Eli Journey so I want to take a quick minute to catch you up on what makes my special boy so unique:

  • Eli was born without thumbs or radius bones in both arms. The hand specialist at the Shriner’s Hospital in Shreveport questions whether Eli’s unique formation may actually include a misplaced thumb and a missing finger, but it matters little as the digit that will be used as his thumb will need to be surgically repositioned.
  • Because of his missing radius bones, Eli’s hands are “clubbed” as they call it in the medical world. Just look at his photos and you’ll understand what this means. Because of this, he will be having a wrist centralization surgery and forearm bone straightening in May. That will give his wrists the stability they need so that he can use his fingers.
  • He was born with a cleft in his soft palate, but that’s old news as it was surgically repaired in September 2007. You also may have gathered that Eli had a skull surgery that was to open a prematurely fused suture and reconstruct his forehead giving him a well-defined brow.
  • He also eats through a surgically placed feeding tube in his tummy. At one month old, Elijah started throwing up all of his food (hummmm) so he was hospitalized for loosing weight. The doctors decided to give him a feeding tube and fundoplication (tightening the opening of the esophagus into the stomach to prevent throwing up). So, we started pouring formula into Eli’s stomach only to soon discover he was severely allergic to the milk in the formula. We soon found Neocate for him and he immediately ran right through 5 pounds into the 6s and beyond.
  • Elijah was also born with club feet. The only uniqueness we were warned to expect in our sweet baby. We worked hard with serial casting to realign his feet. Upon his first visit to the Shriner’s Hospital in Shreveport with their leg/foot specialist, we were told that Elijah was born without knee joints. His leg bones are fused at the knee in a near right angle. He is also missing the growth plates in his leg bones near the knee where the legs do the majority of the growing. With this news, we were told that Elijah could have straight legs his whole life, bent legs his whole life or amputate his legs and give him prosthetics. This was a haunting decision. At our next visit in Shreveport, the kind doctor took the decision from our hands and said that what we need to do is surgically straighten Eli’s legs, amputate his feet and fit him with a prosthetic at the end of his leg that would treat his leg like it was just the top half. So, his prosthetic will have a knee, lower leg and foot. His legs are symmetrical. We expect this surgery by year’s end after his hands and wrists are repaired.
  • Wow, that’s not really a “quick minute” is it? But there’s still more. The doctors tell us Elijah has a vision and hearing deficit. Testing as a very tiny kiddo added those to his unique list. He wears a bone conduction hearing aid on his forehead to amplify sound. His vision seems perfect to us. So, we’ll just have to wait and pray that we are right.
  • Although we have searched, we do not have a diagnosis for Elijah. The geneticist thinks he may be one of a kind, but still we hunt for other kids with a similar set of qualities.

We also have very good news! Elijah’s heart, kidney and liver are fine. He is alert, happy and responsive. He is strong and loving. He makes all who know him smile and thankful. He has the world’s best family and is the most loved little boy. He is worth every fight!

I give you this list of unique qualities so that our search for other children like Eli can continue and your prayers will have direction. Thank you for caring!

3 comments:

Anonymous said...

Thanks so much for starting this website! I am excited to be able to follow the progress and growth you're reporting in your little man. I am sharing the site with the Little Light House staff so we can all pray very specifically for little Eli!

~Kate

Great Aunt Lesli said...

Congratulations on the new teeth! May Eli's smile be even more precious. Thanks for the blog. You've done an excellent job on it. I'm thrilled to hear about the weight gain and that he's not throwing up anymore. Maybe next time I'm there I can "bounce" him. :-) Love to you and sweet Sophia. Hugs and kisses to all.
Love, Great Aunt Lesli

Anonymous said...

My son was also born with craniosysnostosis (in the sagittal bone) and a cleft of the soft palate. He had pierre robin and had a Frankenstein forehead which cleared up after his surgery. His right ear had to be reconstructed due to misplaced ear bones, but he didn't have any of the bone issues that Eli has in his arms and legs.

The point is, I know a nano-smidgen of what you feel and how miraculous every milestone is. I pray faithfully for this little child I've never met. When my son stopped vomiting (we were using pre-digested formula), it was like a vacation, but to this day, I cannot smell Nutramigen without feeling a tiny ping in my heart at the memory of those difficult days.

My son is eighteen now and his difficult days are far behind him. His every success is a miracle and few people understand why I get so emotional seeing my sun RUN in a cross country race, much less wear a medal around his neck. I never thought it possible when he had a helmet on his head, his skull was oatmeal and he was in a walker because the doctors told us a fall could klll him. But with God, all things are possible.

My prayer is for you and Eli to one day have all these challenges behind you and I know you already feel that overwhelming joy at watching him experience miracles. But, if these challenges continue, know that God is crafting each one of you into something positive and beautiful out every difficult moment.

People who don't even know you, love you and pray faithfully for you because Jesus loves you.

Mary Nichols
Forney, TX

p.s. I put something in the mail for Eli. I hope you get it soon.