Long awaited update

Wow it has been a long time since I posted! Things are going great! Elijah is getting so big. As the year anniversary of his arrival approaches I can't help but look back and feel so incredibly blessed that God chose us to walk this! Elijah is now almost 25 lbs...can you believe that! He came last January weighing just 10 lbs at 19 months and 3 of those lbs were of his head! So here are some things he is doing.....

*He continues to be fed thru a G-tube and the drs think that will remain for a long time. He takes nothing by mouth and is on a feeding pump at night.

*He is in therapy 2 times a week for 2 1/2 hrs each and can tolerate standing in a stander for almost 30 minutes!!! During each session he works with Speech, OT and PT.

*He still has sensory issues and prefers not to hold anything in his hands except his pacifier! Working on something called brushing therapy

*LOVES TO BE HELD....not kidding, all the time!! I am so ok with this as we are making up for his first 2 years of life being in constant pain and not wanting to be touched!

*He is in NO pain....PRAISE GOD!!!

*Loves to watch sports center.....seriously...he loves football and basketball!! He will move his head back and forth (think of Ray Charles) and make the "mmmmm" sound....absolutely hysterical!!!

*Speaking of sounds...can say "ba, ba, ba" and make the "mmmm" sound. we are working closely with a speech therapist.

*Sleeping thru the night....however, he does need some strong sleep meds as his brain cannot figure out this sleep thing!

*Still struggles with his sodium levels...we supplement with meds and do blood draws 2x a month to check...compared to weekly.

*Just got fitted with braces for his feet....he needs lots of ankle support. He is still very weak from laying down the first 2 yrs of his life....but is making great progress!

*For example, he can almost sit unassisted.....he has good head control....this is so great because his head circumference is still very large for his age.

*He SMILES and LAUGHS......I could listen to his laugh all day long....oh and his smile melts you....so beautiful!

*He has learned one game...peek-a-boo....put a blanket over his head and he will pull it off and LAUGH.....oh my it is so cute!!! This is huge as he has to reach up to pull the blanket off...AND he can do it with either hand....he is so talented!!!!

*He is followed by an eye dr.....they are not sure how much vision is in his right eye...so we patch his good eye to make the bad eye try and work harder....has not shown much improvement but we will continue this daily for 2 hours each day.

*Followed by Urology...has something called Hypospadias....he will need to have surgery to correct this.

*The neuro team is still very unclear of his future, his scans show significant brain damage. But of course we have already seen miracles with Elijah...he is still here on this earth and I do believe God has great plans for his sweet little life!

Thank you so much for the continued prayers for Elijah....he still has a long road ahead of him but has come SO far!!

HAPPY SECOND BIRTHDAY ELIJAH!!!!!!!!!!!

Wow so much to update! Surgery went great! The Dr was very pleased with how it turned out. We were released after only 48 hours!! We had to be readmitted several days later for concern of shunt failure or meningitis. After many tests and blood work we were able to go home again. He began crying non stop for several days after this but we were able to adjust and add some meds without being admitted. The Neuro surgeon believes his brain is trying to adjust.

Watching Elijah transform from the frail, tiny, lifeless boy that was handed to me on Jan. 23rd has been so amazing!!! Prior to this latest surgery he was in constant pain...even after his shunt was placed. Moving him was torture, even a simple diaper change made him scream. Bathing him was something I dreaded....I know he hated it more than I did!!!! It took him so long to calm down after a bath. He never made any sounds prior to this last surgery, only crying. SO basically he would just lay there. He obviously could not roll, only minimally move his legs and arms.

OK so fast forward to May 21st....this is the day we began to see the NEW Elijah!! On this day we were all in the family room and we heard "ba, ba, ba" OH my gosh we all looked around trying to figure out who was making those sounds. Sweet Elijah was talking!!!! It was the most beautiful, precious sound I have ever heard!!!!! That was not the only change, he loves to be held!! He is still in some pain when I pick him up but nothing even close to where he was before the surgery. Moving him is so easy and he is able tolerate being in a variety of positions. He continues to "talk" and is moving is head lots more. He is figuring out that he can move his head and look straight up... he obviously could not do that before surgery. He is really more interested in toys and is working very hard at holding them. He is currently weighing 15 pounds 7 ounces!!!!!! AND he is looking like he is trying to smile, he is making different facial expressions, so very adorable!! He really is a brand new boy.....I just can't wait to see how far he goes!!!!

WITH GOD ALL THINGS ARE POSSIBLE!!!!!

Short surgery update

Elijah had his surgery yesterday, actually. There were some computer issues and we didn't get the previous update out until tonight. However, he came out of surgery with his encephalocele (his bump)completely removed. He looks like such a different littel boy. However, he lost more blood than they counted on so he needed a transfusion. He needed to be in the ICU for a while as his blood pressure and heart rate kept getting much too high. He was doing better after a few hours (though not super) and was then moved to the neurology floor. Please continue to pray for Elijah as he has a lot to go through for his recovery. We'll post photos when we are able. God has brought him this far, we can't wait to see where he goes.

GOODBYE ENCEPHALOCELE!!!!!!

Sorry for the long lapse between posts...we have been very busy!!! Sweet Elijah has been hanging in there. He continues to be in pain. But TOMORROW is his long awaited surgery!!!!!!! On May 12th at 9:15am he will be having a procedure called a cranioplasty. The surgery will be about 4 1/2 hours. He will go to ICU for at least 24 hours and then hopefully if he is doing well move to the neuro floor where he will stay for about a week...all this is depending on how he does. Can you please be praying for Elijah...he has been thru so much. Our prayer is the surgery is successful in that he wont be in anymore pain and that just maybe he will smile for the first time!!!! Please be in prayer for Dr. M and all of his nurses who will be working on Elijah. I will update as I can tomorrow from the hospital.

Thank you so much for praying for Elijah!!!!!!!!!!

Sweet Elijah update

Elijah had something called a FEES (Fiberoptic Endoscopic Evaluation of Swallow), basically the Dr put a scope down his throat with a camera at the end of it. What we found out was he does not have a safe swallow. When his vocal cords were touched he did not respond for almost 2 minutes and then he finally coughed. He has a very delayed cough. Good news is he is not aspirating on his saliva. He is however aspirating on food and drink. So basically what the Dr said is he most likely will have to be fed thru a tube for a long time...if we try to feed him by mouth he is at great risk for aspiration pneumonia. Not the news we wanted to hear but we will continue with more testing, the next test to see if he is refluxing what is in his stomach.

On April 12th he has an MRI to see if his ventricles have decreased in size and then on the 13th he gets his stitches out...YEAH!! I can tell his head feels different and looks a bit different. He is still uncomfortable and grumpy, but the shunt is set at a very slow flow rate. I expect the Dr to increase this flow rate at the appt on Tuesday.

He continues to gain weight and is really just the cutest thing in the whole world....we are all in love with him!!!! Check out the latest pics of our cutie!!!!

Surgery photos update

Here are some photos of Elijah at the hospital.

A tearful handoff

Recovery room

He has three different incisions. 2 on his head.

One on his belly.

Doing great with his CT scan

Surgery Update

YEAH...surgery when great!!! No problems placing the shunt. We are in our room waiting for a CT scan. He is having some trouble with retching and vomiting. We are just doing lots of suctioning. We are going to try and start his continuous feeds soon. We will not be able to go home unless he can tolerate his feeds. He has a great new hairdo...shaved on halve of his head!!!

The surgeon said he has extensive brain damage and that he would be full care the rest of his life. This is good info to know and tuck away but what we are really waiting for is God to reveal what amazing plans HE has for Elijah. It is so wonderful to take him out and for people to stare at him...I love this...it gives me an opportunity to share how God saved his life. Elijah is a little witnessing machine by just being his precious little self, how cool is that!!! He is touching peoples lives by just his presence. We are loving this journey....we are a little tired but would not want to be doing anything else!!!!!