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.

Time to eat!

The past few weeks have been quite an experience.  We have been through so much to get Cyler into this feeding clinic in Orlando.  Everything had to be coordinated perfectly and no one was on the same page.  Between the insurance, transportation, work schedules, and the feeding clinic staff it was quite a mental work out.

Finally, last Thursday we were able to begin.  Thursday and Friday went very well.  Cyler did amazing with his therapist.  He continued to eat and do well at home and ate like a champ over the weekend.

Today he ate really well also, but not without protest.  He had a new therapist today and they didn't get along so well.   He will have her all week so hopefully they will work it out.

He has been put on Eryped to help with gastric emptying.  He has been on it a few days now and all I can say is that he is giving the toilet a work out.  I am not sure if he is coming down with a cold or if he is experiencing allergy symptoms.  We did move the Zyrtec to the evening as suggested, I wonder if that has anything to do with it.

I hope this all works itself out soon.

3 years !!!

We have had a very busy week.  On Monday Cyler went to the eye doctor.  He did so well.  He thought that it was "hilarious" that both the tech and the eye doctor were going to check out his eyes. The doctor said that while Cyler has a "drift" he is not concerned because he was able to manipulate it and Cyler was able to refocus himself.  He also went on to explain that 60% of sensory processing is done through the eyes (optic nerve) and his eyes were perfect.  In his dictation the doctor noted that Cyler was "surprisingly cooperative and well behaved for his age".

Tuesday we started off at Dr. Mehta's office (GI).  Dr. was not to happy that the feeding clinic said that he wouldn't be able to get him in til March and said he would make  a few calls. This appointment was routine.  Dr. checked him out and made a few med changes.  Dr. Mehta did ask Cyler if he brushed his teeth.  Cyler at first didn't answer but then Dr. Mehta told him that brushing his teeth was most important.  Cyler than replied:  "well than, YES".   "Yes I do brush my teeth"  "I brush them everyday, day and night".  Cyler was most excited that he was now tall enough to ride the "Shamu roller-coaster".

After the GI appointment we headed over to the heart doctor for a two year followup.  He did very well again despite the fact that he wanted to get to Sea World.   They did an EKG-Cyler did great.  Then Dr. Riddle came in and said she would like an echo done. The last time he had an echo done was almost 2 years ago and he was asleep.  He did AMAZING this time.  He stayed still for the entire hour long process.  The tech had cartoons on but Cyler was more interested  in keeping the tech entertained with his impressions of what he saw on the monitor.  He noted that the flaps (valves) opened and closed to let the blood through, how many chambers there were, etc.  I was shocked.  When we got back to the room Dr. Riddle came in and she started to explain that everything was great and there weren't any restrictions.  Cyler felt it necessary to ask her if his "flaps" were ok and if the blood was alright.  (basically he wanted to know if he could ride the roller coaster).  She explained to him that his "flaps and blood were ok" and that he could ride any ride that he is tall enough for...and follow up in 3 years.

------We did go to Sea World after the Dr. appointments.  Cyler did get to ride the Shamu roller -coaster and a few other rides.