May resume regular activity!

Cyler had been on restrictions since his surgery Dec 30th.  No pushing, pulling, lifting, jumping, etc.   Cyler followed those rules for about a week.  Finally, on Feb. 12 he got his clearance.  We had a difficult time explaining to his therapists that he was limited in what he could do.  One of his occupational therapists flat out ignored the fact that he had any restrictions and that was only 2 weeks post op. I told her right before their session and she proceeded to put him on the floor (on a sheet) and then pulled him around the gym.  I had to stop her.  I couldn't watch him straining to stay upright.  I reminded again that he can't do any activities that put stress on is abdomen until he is cleared.  I added that he just had surgery.  She asked me where??  I almost fell over.  After another explanation of what was done (surgery) and where (abdomen), she agreed to do lighter activities.  UGH!

On the positive side we have seen a big improvement in his balance and coordination now that he can utilize those abs.  He has always had them, they just weren't connected to each other.  He was able to balance on one foot almost right away. Its been a transition for us as well.   For 5 years we have been trying to protect his belly while at the same time allowing him to grow and explore.  There are times we have probably been a little more protective than necessary.  :)  Well after all those years protecting that belly he has decided to make up for lost time.  He is jumping off of things.  Last week he attempted a jump from his toy bin to his bed and missed.  ---says "it was like motocross".   Yes, we freaked a little.  Fortunately, he wasn't hurt but it hasn't stopped him either.

Here is a picture of his belly 1.5 months post op.

He is very proud of his new belly.  He loves to show it off.  He is scheduled to have an inguinal hernia repair the beginning of March.  The surgeon said it should be a day procedure. I don't like the idea of another surgery but it is necessary.

The Belt

We had a belt made for Cyler that would offer a little compression, a little protection, and a lot of confidence.  He has worn one every day since he began walking.  Originally, we used a product called walking wings---it was a belt that fit around the chest and had handles.   He used that while he learned to walk.

Once he was walking more we took off the handles and moved the belt down to cover his O....and he was off.   He outgrew that and we had to think of something so we took the belt to a seamstress and asked if she could make something based on that basic design.

Above is what we ended up with.  We had her make several of them.   Occasionally, people would ask what the belt was for.  I would usually tell them it was his super hero belt.  So, we decided to put a super hero patch on it!

When we got home from the hospital the other day Cyler asked for his belt.  We told him that he didn't need it anymore.  He insisted that he did because he is able to run with it on.  So... we put it on him as lightly as we could.  Within a few minutes he wanted it off.  He hasn't mentioned it since.

New Year New Belly!!

Cyler had is muscle closure surgery Dec 30th.   The surgeons were able to close completely without the use of mesh.  It did require that he be on the vent for one day after the surgery.  I almost lost it.   They made sure that I was absolutely aware that this was only so that his body could rest and not because he "needed' the vent. It was very hard to see but we did it and he rested very comfortably.  

They took him off the vent the following day and he did amazing.   He didn't like the fact that he still had the other tubes--NG, IV, etc.  But he understood, as much as a 5 year old can, that they would be coming out when it was time.  We ended up staying at All Children's Hospital for 5 days.

He got the nurses a little concerned when his heart rate would drop into the forties.  I used to panic too!   Cyler has had multiple Echos, EKGs, and Holter studies.  However, these nurses and doctor's were new to Cyler and how his body works (and he just had major surger).   They called in the cardiologist to check on Cyler.  I explained his history and that he had been followed by Dr. Riddle.   The cardiologist informed me that Dr. Riddle was in fact working at All Children's.  I was completely taken aback....OUR Dr. Riddle!!!   Cyler had to wear a Holter monitor overnight so that they could see his rhythm.

The next morning the cardiologist told us that it was sinus bradycardia and not to worry unless he has symptoms.  This confirmed Dr. Riddles findings but it's never a bad idea to check.   We got the information so that we can continue care under Dr. Riddle.

Overall our experience was amazing.  They took great care of my little man.  He took care of them too!   He discovered the call light while in there and that if he pushed it he would get "things".  He asked for chocolate milk, legos, and at 5am one morning he rang for pain meds.   He handled all of this better than I could have imagined.  I am so proud of my little super hero!!

Here is his belly at 7 months old:

Here is his belly about a year ago---and how it looked right before surgery minus the Mic-Key tube.

Here is his new belly (1 week post op)....I will post an updated pic in a new post once healed better.

The heart of the matter...

I called Cyler's cardiologists office today to see if she would like to schedule an appointment with us to clear Cyler for his upcoming surgery.  I was politely told by the nurse that his doc decided to have a baby of her own and liked it so much she wouldn't be returning after maternity leave.   I immediately had a mini freak out.   She has been following Cyler since he was a baby.   She has calmed ME down and worked ME through everything.  She knows all about his unique little heart---the PVC's, bradycardia, and even a little flap of patch that we see every now and then during echo cardiograms.  During the last appointment she told us that she doesn't even need to see Cyler for 2 years since everything was ok.

After my brain recovered from what I had just been told, the nurse explained that Dr. Riddle had made a recommendation as to what cardioligist should follow Cyler.   I asked  the nurse if this new doctor was told all about Cyler and his heart.  I also asked how much training and experience he has had.  She then said " well, I don't know if you have heard of CHOP"....she didn't need to go any further but I am happy that she did.    She explained that he has a good deal of experience and has been completely filled in on Cyler.  This  information made me feel a lot more at ease. Actually, when I was pregnant with Cyler and found out about his omphalocele we seriously considered traveling to PA for his birth so that he could have access to the experts at Children's Hospital of Philadelphia.
However, we ended up spending the final month of pregnancy on bed rest as a patient of Winnie Palmer Hospital in Orlando, FL.

Anyway, the nurse ended up giving us a call this evening to let us know that the new doctor has thoroughly reviewed Cyler's record and has determined that he is clear from a cardiac standpoint.  I am relieved and nervous at the same time.

The time is almost here!

Cyler is scheduled to have his omphalocele  muscle closure surgery the beginning of December.  We have chosen to go with our second opinion surgeons.  They have tons of experience with kids like Cyler.   We felt that the last surgeon wasn't to sure of himself.   We kept hearing "6 more months".  Please understand that we are  in NO rush for this surgery to happen but it needs to.   We are eternally grateful to Cyler's prior surgeon as he has performed surgeries on Cyler from the day he was born we just needed to get a second opinion.   

We have explained to Cyler what is going to happen and he pretty much understands.  He is such an awesome kid.   They explained that the surgery could take up to 4 hours.  This is our baby and it is going to be hard for him...we don't like that.  We don't want want him to have any more pain.   He is so brave and strong.   He has handled so much in his 5 years than most have handled in their entire life.  HE IS AMAZING!

Cyler is 5!

We have had an interesting couple of months.   Cyler is now 5...YAY!   He decided on an M &M birthday party.  My lovely mom and sister made an egg free cake and cupcakes and everyone had mac    and cheese.  This was also the first party in which he invited his friends (half of the neighborhood). He is growing up so quickly and we are so proud of him.

He had his Mic-Key button removed a few days before his birthday.  Actually, he and I took it out at the doctor's office.  Cyler is doing very well with the eating.  We are doing a little more variety but not budging on the textures.  I am completely ok with that for right now and apparently so is he.  

Shortly after his birthday Cyler contracted strep throat.   We just went to the doctor today and caught it early.  He was not wanting to swallow and gagging easily.  Fortunately, he isn't fighting me too much on drinking fluids.  The MD told me not to worry about eating at this time and to just make sure that he drinks.  He even took his meds without much of a fight.  They did ask me if I wanted "flavoring" in his medication.  The medication said that it was cherry flavored as is, so I didn't feel it necessary to add more.  Additionally, I don't think that medicine should be made to taste like candy!

Lastly, I have wanted to homeschool Cyler since he was born.  I have always felt that he would be able to learn more about the real world from spending time in the real world instead of being in a room with 30 other children.  I feel strongly about education and I am running into so many different and opposing views.   I am not homeschooling for religious reasons or as a protest of the public school system.  I am not unschooling.  

We are off and running

Cyler didn't finish out that last week at the feeding clinic.  He never did work it out with that therapist.   I did have to interrupt one of the sessions.  The therapist was sitting behind him and pulling his head back while shoving the food in his face.   I was absolutely mortified and he was screaming so I had to end it.  The rest of the week he was with the other therapist and did better.  However, the following week he started acting strange.  I told them that there was a difference in the food that they were sending up.  He ended doubled over in pain on several occasions.  One time he even ended up in the emergency room.

During one of his episodes of pain he ended up biting the therapist.  She was blaming his behavior.  Turns out the food that he was being "forced" to eat was made with egg.  He is highly allergic to egg and that's what caused this severe reaction.  I did not take him back there (other than the final meeting) since I found that out.  Furthermore, as far as Cyler biting the therapist--I think that if I was strapped to a chair, in agony, all while listening to the hokey pokey might have caused a similar reaction.

Now on the the good stuff.  Cyler is eating like a champ.  We are constantly adding new foods.  Right now everything has to be pureed but that is ok.  He doesn't get any overnight feeds and is completely off of the Peptamin Jr.  We are absolutely thrilled.  Some of his favorite foods are yogurt, mac and cheese, and spag o's.   He really loves broccoli and Velveeta.

Since Cyler is not on overnight feeds anymore we have also lost our nursing.  Terry took a job at Knight's Trucking.  He is out on his first run right now.  This is all going to take some getting used to. We are used to being together all of the time and now it is going to be weeks before we are together again.  Thank GOD for cell phones.