March 2, 2011 My Broken Boy
So, it's been awhile since I've updated this page.  Sorry.  We have been quite busy!  Ethan has had 5 broken bones since August and it's been terrible!  He has suffered so much, especially since the later breaks weren't even put into casts, they were just soft splinted.  Basically we just used a velcro padding to keep his legs straight and help them heal.  He's such a fighter though!  He still manages to smile each and every day, even in pain and scared every time we move him that something else is going to break!  It has been unbearable for me to watch at times as the doctors hold his broken legs down and take x-rays as he screams in pain!  I have had to ask Dad go to some of the doctor's appointments over the past few months!  I usually like to be there, it's a small control issue I have and I need to be with my baby!  He is doing better now.  He started IV biphosphonates this past Monday for 3 days straight and he will get this new med until his bones are stronger.  So hopefully no more broken legs!
Sept.12, 2010  Another fun Fund Raiser
Thanks to everyone that came out and helped out with the Vegas Night fund raiser!  It was so much fun and we raised enough to pay off the doctor for the treatment Ethan had in June.  We hope to have another one in December.  Please know that all the money raised goes directly toward the cost of Ethan's medical treatments!  You do make a difference in his life, so keep attending and having fun at the Ethan's Angels Fund Raisers! 
August 20, 2010 Another broken Bone
 Today Ethan was diagnosed with another broken bone, his right Tibia.  He has osteopenia and his bones are very soft.  We think it happened when a nurse was changing his diaper; he screamed and didn't stop crying for 15 minutes!  Although it is difficult to pinpoint the actual time of injury since he can't talk to tell us.  We struggle with all these side effects because of all the meds he's on!  Sometimes I think he would be better off stopping all the meds and see what happens.  But he does need some of them!  Anyway, he has been doing slightly better since the treatment.  We have noticed changes in his vision, alertness, less seizures (except for the week and a half before his leg was casted and he was in pain), and also he has been gagging less.  All of his therapists have noticed a difference!  We just pray that he keeps getting better and we can afford to take him back to Ecuador to get his cord blood treatment!  I just know that it will help!
June 30, 2010  Ethan's First Treatment
We travelled to Ecuador (Ethan, Mom, and his nurse) and Ethan received his first stem cell treatment.  Unfortunately, we were unable to get his cord blood shipped from the US to Ecuador for this trip.  Lots of red tape and not enough time.  Hopefully we can do that treatment at a later date.  The trip went well, it was certainly a whirlwind! We left our driveway at 9:30am on tuesday morning and drove to Miami, boarded the plane at 7pm, landed at 10:30pm.  Then we woke up Wednesday and went to the clinic for Ethan's treatment, went back to the hotel at about 4pm and rested for a bit.  Then we were on the plane out of Ecuador at 9am thursday morning and home by 10pm.  We hope to see improvements in anything from Ethan's sight, to his motor control, to less gagging, or maybe even talking!  We are hopeful!

April 23, 2010   Hope for Ethan's healing

We are closer than ever to getting Ethan the help he needs for a better quality of life!  Namely, his cord blood infusion!!!  We are very excited to announce that we have found doctors in Ecuador that will infuse Ethan's cord blood and are very optimistic about the outcome.  We are in the planning stages of the trip and we are also doing some fund raising for the cost.  Ethan still struggles daily with lots of secretions and gagging.  He is very uncomfortable when we feed him which is 20-22 hours per day.  He is such a happy and playful boy when we turn the feeding pump off for awhile, and unfortunately the doctors can't figure out the problem.  Thank God he continues to grow even though he is still fighting off C-diff.  All I can say is that we are counting the minutes until he gets his cord blood and hopefully it will help him in some way to feel better than he is now.  It breaks my heart to see him suffer everyday.

 

January 21, 2010    Still struggling: but so strong 

Ethan has been sick since the beginning of December with C-diff.  That is a condition that affects your intestinal tract and is very hard to fight off, especially for a kid like E that has a weak immune system.  It is a condition that can be fatal and so we are not taking it lightly.  He was hospitalized for a few days before Christmas and is back home now.  He has been on medication for over a month now and is still struggling.  He is so strong though; even with excrutuiting stomach cramps, he is still happy.  He goes from playing to screaming uncontrollably then back to playing again after the pain stops.  I wish everyday that I could take his pain away.  We all try to help him deal with the pain but feel so helpless.  He is doing well otherwise and is actually working hard in most of his therapies.  But for now we still need prayers for Ethan to beat the C-diff and also; as usual; for a doctor to infuse his cord blood.  We have some new and exciting Fund Raisers going on so check out the links to see more about them.  We are starting to plan another benefit concert also.  We can't wait; that one was so fun!

 

November 16, 2009  Happy boy

Ethan loves the weather change...he is an outside kinda boy!  I think he would love to go camping.  He gets so happy when we take him outside in the cool weather!  His eyes light up and he makes very happy sounds.  The weather has changed here from 90's everyday to 70's and 80's and at night it's actually cool!  It's nice to be able to take him outside again, since he never goes anywhere but to the doctor's office or the hospital.  I can't wait until his immune system is stronger so he can be a part of society again.   He used to love church, the music, lights and people too!  But it's too germy out there for him.  We can't even send Ella to daycare or dance class for fear of her bringing home a nasty illness.  But Ethan has been doing a bit better lately.  Although he did scare us today with junky lung sounds...but it all was fine when we got to the doctor.  Thank God!

 

October 18, 2009  Having a rough time again

Ethan has been having more secretions lately and the doctor even gave him an antiboitic just in case it was an infection.  Unfortunately, it is still unexplainable...once again he is keeping us guessing!  We can't tell if this is sinuses, nausea, allergies, or a result of the surgery that went bad.  Oh, did I forget to mention that his surgery didn't work?  Yeah, he shouldn't be able to throw up or reflux but he has been doing both for a few weeks now!  We feel so terrible!  Had we known this was a real possibility, we never would have done the surgery in the first place.  But, as they say, hind sight is 20/20.  We just feel bad for Ethan having to endure more pain and suffering.  I just pray that we will be able to get him his cord blood soon and maybe it will help his suffering!  Thanks for all your prayers for him... we know God is what has gotten him this far and He will bring him through this.  Thanks to everyone that is helping with the fundraisers...we'll have more on that soon, I hope.

 

 

September 8,2009  Standing once again

Ethan had a great day today...he is back to his old self again.  He had Physical therapy and Speech therapy this morning then he went into the stander for the first time since the surgery.  He did GREAT!!!  No crying and he actually played with his toy while standing.  He was going in the stander everyday before the surgery.  He has had a very busy day.  We had a GI doctor appt. also.  She said he's doing great and said we should expect a lot of gas with the fundoplication.  He is handling it much better though, we are giving him large doses of simethicone to help.  But the most important thing is that he is standing again!!!!  I'm so proud of him!

 

August 31, 2009  Our little Superman

Ethan had a great day.  He tolerated Occupational therapy and a bath today with no crying.  He was awake all day and into the evening.  I think he was feeling so much better, he didn't want to miss anything.  He seems like himself again, but still in pain from time to time.  He is so strong, he has been so brave through this surgery and recovery.  I hope the worst of it has past now.  He even played with his toys for a bit today, it was so nice to see.  He is sleeping now, but Mom and Dad won't sleep well tonight.  Our night nurse called out tonight so we will take turns staying up caring for Ethan, and that way at least we can get 4 or 5 hours of sleep each (maybe).  It sure does change plans though, we were hoping to spend a few minutes together tonight, we haven't seen each other in days!  Dad started a new job and has been working crazy hours.  But this is just part of our life.  This happens often, and we just try to remember that hopefully soon things will get better for Ethan, and for our whole family.

 

 

August 30, 2009   Feeling better

I'm glad to report that Ethan is feeling better today.  He has had such a rough recovery from the surgery, but we are finally seeing some healing to the site and much less pain with movement.  Today was Nick's birthday party(Ethan's big brother) .  He turns 18 this week.  It is always difficult to go to a party without Ethan, leaving part of the family out is sad but he can't endure those types of gatherings.  It's too risky for his health, he could pick up a germ and be sick for weeeks afterwards.  Plus the confusion causes seizures and irritability for Ethan.  It is hardest for Mom but I think the whole family feels the void. 

 

 

 

August 27,2009   Fundoplication surgery

Ethan had surgery on August 12, 2009.  He went in for a fundoplication (they take the stomach and wrap it around the esophagus to prevent reflux and give him the ability to eat into his stomach and possibly by mouth again).  They also did 2 liver biopsies and changed the site of his feeding tube.  So, he has quite a few holes in his cute, little belly.  There were a few complications during and after the surgery.  They couldn't do the Nissen fundoplication they had to do an anterior wrap because his stomach was too small and not pliable enough.  Then after surgery he needed a blood transfusion.  Then he started third spacing (which means he couldn't get rid of all the IV fluids and started to retain water and puff up like a dough boy).  It was terrible.  He had pleural effusion (fluid in between the lungs and the rib cage) and even some fluid around his heart.  The had a few doses of Lasix and that helped tremendously.  It was a very rough stay at All Children's hospital.

Home:

Ethan came home on August 18 (it was only supposed to be a 2-3 day hospital stay).  Since he's been home he is in so much pain.  It has been so hard to watch as he screams out and there's nothing we can do to help.  He's on codeine and ibuprofen but we can't move him without intense pain.  He has had a few follow up appointments with his doctors and we discovered that his surgery site is now infected. They prescribed antibiotics so hopefully he will start to feel better soon.  He has been unable to do therapies and any activity because of the pain.  We just pray that the pain will stop soon.