Surgery update

Sorry for the long delay... The days have been shorter and fuller since then. Memphis' surgery went well, as planned. The lump was just a fatty benign mass. The day of surgery, Memphis was wowing all the nurses with his charm as usual; doing somersaults in the bed, playing with toys, and getting the maximum number of "awws" that he could. The surgeon was very interested in his eating problems, and seemed to be the most educated person that we had spoken to about CDH in Huntsville. He was so interested, that he decided to order a swallow study on Memphis in the next following days. After surgery, Memphis was so mad, as expected. He only had to stay about an hour, just until the general anesthesia had worn off enough. At home he was his normal self after a long nap and some food. Acting as if nothing had happened.

The swallow study went as we had expected. Memphis would swallow nothing. It was a big flop, nothing was proven or dis proven. Once again we are left with the solution of just waiting until he decides to eat.

Once again, sorry for the long wait, and the lack of information, but I will sit down and write a proper write up soon. He has gotten so big and mobile.

A small surgery

Memphis will go in for a small surgery today. He has what seems to be a fatty lump under his left arm, and the doctor has insisted that it needs to be removed. An adult would simply just receive local anesthesia, but being a child, and lacking the ability to just lie still, he will have to be put under general anesthesia. Should be simple, just keep the little man in your thoughts.

Another Hurdle

Memphis went to the eye Dr. last month for his left eye, we learned that Memphis has a Strabismus. Strabismus simply means the misalignment of the two eyes.  If Strabismus goes unchecked, the misaligned eye sends blurred images to the brain.  Automatically, the child's brain rejects the blurred image, and soon the child unconsciously stops using the weaker eye. A vicious cycle begins which eventually results in permanent loss of vision called amblyopia ("lazy eye").

Some of the tools to help Memphis are glasses, patching, and probably eye muscle surgery. Last month Memphis was prescribed glasses and given a referral to see a Pediatric Ophthalmologist (eye surgeon). 

This month, today, Memphis went to meet with the Ophthalmologist and we learned several things. First, his glasses were probably not working since his left eye was still inward even with the glasses on.  Second, he has very little if any sight at all in his left eye. Third, his left eyeball does not move all the way to the left side of his eye.  The Dr. thinks that maybe one of the muscles in Memphis' eye is tight and the reason for not moving all the way from left to right.  The muscle would be tight since he does not use that eye for sight.  We have now started patching.  Memphis has to wear a patch for four to six hours plus a day for six weeks.  At the end of six weeks, Memphis will go back to the Dr. to find out if his vision has improved.  The patch hopefully will improve Memphis' vision, but it will not change misalignment of the eyes. Once his vision is good in each eye, the Dr. will then begin to recommend treatment for realigning the eyes.

So what causes Strabismus?  Six muscles attached to the outer wall of each eye control the movement and alignment of the eyes. The eye muscles are similar to the muscles in your arms and legs, only one-thousand times smaller and more delicate.  The brain controls the balance between the eye muscles and links the two eyes so they move together as a team -- just like the front wheels of a car.  The exact reason why an imbalance occurs in the brain's ability to lock the two eyes together is not fully understood.  Not all of Memphis' eye muscles are working together as a team :-( they must not have gotten the memo.

SO, this is Memphis' new hurdle in life.  I guess there always has to be a hurdle?

Aside from this, Memphis is doing great!  He is all over the rooms and into every drawer/cabinet keeping mom and dad super busy.

Feeding is still a major issue we battle everyday very slowly.  Mom and dad have decided there is no reason for pushing the topic with Memphis he will eat when his is ready.  We now just try giving little bits of whatever we have whenever and wherever we are.  He also is still attending feeding clinic as well as getting OT therapy sessions.  Mom is also still blenderizing his meals as well as giving some Complete Pediatric formula for more calories.

Ohhhh Memphis, What a wonderful little boy :-)

Memphis at 1 Year!!

Memphis turned one on August 19, 2012!!!!!

Wow what a crazy and long journey just to get to the wonderful age of one. I cannot believe one year ago we were sitting in Children's Hospital in Birmingham hoping that he would survive -- feeling completely helpless, unable to scoop up our little baby boy and take away all of his pain.

 Memphis is doing great, he has now completely mastered the art of crawling on all fours might I add.  No more military crawl while dragging one leg behind though effective was obviously not the typical baby crawl. Memphis is also pulling up on everything and even attempting to start walking around objects that he has pulled up on. According to Physical Therapy, Memphis is right on track.

Memphis is beginning to babble.  He is now saying Da Da Da, Bu Bu Bu, and Hi.  He is also waving goodbye and clapping his heads to say YAY.   He is very expressive with his facial expressions.  He is so cute when he is told No and doesn't like it.

Feeding is still a very big issue.  Memphis will not eat by mouth no matter what mom and dad try. He will however allow you to give him tastes of food without gagging and throwing up.  We call this a feat.  Now that Memphis is one years old we are trying to steer away from formula/breastmilk and find another source for nutrition.  The Doctors want us to use Pediasure.  Mom and dad  are not big fans of that idea. Would you give your typical child processed nutrition from a can or whole foods?  We have decided to blenderize whole foods instead.  Much healthier in our opinion. We did try and appease the doctors by giving pediasure a try along with blenderized meals.  This was of course weeks after we had already introduced many different type of foods blenderized. We found out within just a few days that pediasue did not settle in Memphis stomach very well, he began throwing up after every feeding.  We hope that giving Memphis blended whole foods will help him develop a taste for food.  We are still going to look for some type of product like pediasure that Memphis can tolerate for on the go purposes.

So, aside from our ongoing feeding issues, Memphis is in the 15th percentile of his peers in weight at 20lbs and in the 75th percentile in height at 30".  He is a beautiful, happy, stubborn, hard  headed One year old child.

A long needed update

So... It's been a while since we have updated this thing... Seems such a daunting task. Everything has been going really well. Memphis has come so far now from where he was. He has been moving around on the floor very well, not crawling, but moving. He lays flat of his back and pushes with his feet. Very recently he has been perfecting somewhat of a military crawl, using only one leg. He has also started sitting up by himself, and starting to pull up to standing! This has really been great for his well being. He seems so happy with being able to be mobile. Now there are problems associated with being mobile. Primarily, his feeding tube. This tube has always had an issue of being pulled out. It has usually only been pulled out when it has been wrapped around something and we pick him up or move him, but now it has been pulled out by him once or twice. This last week we had to take him to Huntsville Hospital's emergency room and then on to Children's for a pulled out g-tube button. Evidently it had been out of his stomach for a while, and the muscles had closed up around the tube. That makes for a long day. Memphis' reflux problems has lessened considerably. He still has major issues with swallowing and eating, but things touching his lips no longer makes him gag and throw up. Mommy and Memphis have been working diligently to try and solve this issue with OT and feeding clinics. Progress is being made, but a slow process it has proven to be. He has been working so hard to meet some typical benchmarks, but a typical baby is far from what he is. His weight is somewhere in the tenth percentile, while his height is around the fiftieth. He does copy Mommy and Daddy, and play games like shaking his head. Just in the last few days he has really started to babble. He is showing so many improvements. We have also been working with him with some basic signs. He doesn't react to them yet, but we expect it soon. Braden has been doing very well. He has started Pre-K, since he is right behind the cutoff for kindergarten. His dance has started back again also. He has been moved up to a more advanced ballet and tap. He is so good at it! Rowan is doing well also. She has just started fourth grade. A new friend of the family has moved in next door, so this has kept her busy, along with the rest of the family. She has shown great interest in attempting vocal lessons. She has great pitch and has a knack of learning melodies so quickly. We are going to find her a coach and see if we can nurture this natural talent of hers. Thanks for reading, I
hope to update more often now. hope.

The Fam!

Hey guys! It's been a while since the last time we have posted, so i thought i owed an update. Memphis has been doing well these days. He has been gaining weight every time that we go to the doctor. He is right on path of where he should be, perhaps even a little better than we expected. They have modified some of his feedings, and taken away part of the micro lipids. This is great for him. The more natural his feedings become, hopefully the less reflux he will have. Speaking of reflux, that is or major problem as of now. He is still having reflux issues everyday. Most of them aren't severe, but every once in a while they seem to be severe. Mostly he only brings up one or two cc, but on the rare occasion he will bring up enough to choke himself, or make a mess. The oral feedings are still going slowly, but i feel like he is getting better. We have a feeding clinic to go to on Monday. We shall see how that goes. We are dreading the changes they may want to make, but he needs to eat by mouth. Oh the changes. Physically he seems to be advancing. He is able to turn himself over to his belly now, and he isn't hating that as much here recently. Even sometimes preferring it while his asleep. The only issue with that is his ability to flip himself back on his back. He scoots around the floor on his back now. It's great! Grabbing for toys is no issue now. He picks them up just fine, and they go straight o the mouth. He also isn't choking himself with his toys and fingers as much. So much improvement. The rest of the family is doing well. Braden is being crazy as usual. Being a little boy. Rowan is doing well in swim, and school. She brought in a straight A progress report! Not much news other than this though. We will do our best to keep it updated.

Home Again!

So as you all know, we were hospitalized a few weeks ago. We went up to Children's Hospital on a Wednesday and after MANY tests, an IV, no food, and two very stressed out parents later they finally released us on Friday afternoon. Mom and Dad pushed very hard for us to go home as soon as possible. They placed us on the Pulmonary Distress floor. On this floor there was a case of RSV, Flu A, and Metapheumonia; these were just the three we knew of. We were in the war zone for Memphis. We were sent home on oxygen and told that Memphis probably had some sort of cold and he just needed a boost of oxygen to get through it. The doctor said that a typical person will get a cold and it lasts anywhere from seven to ten days. With Memphis and his fragile lungs it could take up to a month or longer for him to fight off a cold. It is now two weeks later and Memphis is still on oxygen but doing much better.

Memphis saw his GI doctor for the first time yesterday. He was very impressed with our little man, he said his growth looks great. He did change a few medicines around as we are still tweaking to help with the reflux. The doctor is pushing for us to get into a feeding clinic -- which we have been trying to do for weeks now with very little success. There are so many hoops that have to be jumped through thanks to insurance before things can get done. Because our family Dr. is not a Medicaid provider we now have to find another pediatrician that is a medicaid provider in order to get a EPSDT screening which is basically a WELL-Child checkup before we can get an appointment to the feeding clinic. Geesh...

Speaking of feeding, Mom got Memphis to take almost 2 teaspoons of Oatmeal yesterday!! Of course it took 30mins to get everything down and yes some was on his face, chin, and basically all over but a feat just the same.

Memphis has his Orthopedic (Helmet) appointment tomorrow morning. At this appointment, the Dr. will do another head scan much like he did in the beginning to see how much change has occurred. We are of course hoping for a big change and not much longer with a helmet.

Once again, sorry our posts are not as often as they should be.... We are always saying we need to post and then things come up and we get sidetracked :-(