Small, but good!

Hello all!

Memphis went in for a followup on Wednesday regarding his eye surgery. The doctor was quite impressed with his progress. He inquired about how much we had been patching. We were supposed to patch every day for about an hour, but alas life got in the way. Memphis absolutely hated it regardless. We have not been patching at all. The doctor was amazed at that point. Memphis' eyes track great and he sees now problems reoccurring for now. A long day for mommy and Braden, but it was good news.

Signing with him is doing great! He currently has about 20 signs that he does, and he understands many more. He is making lots of noise now, but none seem to be trying to communicate other than just getting our attention. Regardless he is making such big boy progress!

We are currently working on birthday plans for his second birthday! He is such a big guy now. I will let everyone know what the plans are when we get them finalized.

Until next time.

If you want more information regarding CDH you can always visit http://www.cherubs-cdh.org/

Everyday life, and everything is good

Hey guys! Sorry for the long wait. Memphis is doing great! He is now using sign language as his primary form of communication. He shows no sign of really "wanting" to talk. He has aroudn ten to fifteen signs that he uses. Dog, cat, water, eat, and a few more. None of them are perfect, but we know what he means.

One of our biggest hurdles as of so far is him becoming more mobile. A couple of weeks ago we spent a whole day in the hospital because he had pulled out s g-tube button while we weren't looking. We had to go to the local hospital first, just to get something pushed through the hole. After they convinced us that they could get the button itself back in, we waited and watched them push and prod on the little man for a couple of hours. All the time we are having to hold him down. Finally they got a foley catheter pushed through and sent us on to Birmingham. Of course now it was almost seven in the evening. Two hours later and about 120 miles, we were seen in the ER of Children's hospital. When the surgeon finally came in, he was done in two minutes. Man talk about a cranky little guy the next few days. Lesson learned: Just tell the local guys to stick something through, so we can begin driving to Birmingham.

His eye surgery has seemed to corrected everything. The over correction even seems to be going away. Two little beautiful eyes looking straight at you now. His hearing was tested a few days ago d everything still seems fine with that also. If we can just get him to eat now.

On the subject of eating, all the specialists say that he is on the right track. He will taste almost anything once, and come back over and over for salty things. He just wants the taste though, not the substance. He immediatlely tries to remove anything solid that gets in his mouth.

Well, school is almost out, the days are long, and the kids always want to be outside. Memphis included. He loves the outside. His most upsetting parts of the day is when Mommy or Daddy have to leave and he cant go with them. Still the happiest baby though.

Thanks for reading!

Strabismus

We just arrived back from Birmingham, from a follow up after Memphis' eye surgery.  For those that didn't know, Memphis' left eye had a strong inward pull. Dr. Cogen told us to attempt patching, but if that did not work, surgery would be necessary. Needless to say, surgery was needed. A very simple surgery was done to allow his eyes to drift outward. At today's follow up, the doctor stated that everything looked wonderful, and now we wait to see if his brain accepts the information from the left eye. We all hope it does.

Memphis has been doing very well, and the surgery only had him under the weather for about a day. Quite amazing how quickly a little one's body recovers. He has been running around the house like crazy now, unfortunately bouncing off of every corner, door, and other head level objects. Maybe one day he will learn to look where he is walking. Doubtful, I still walk into stationary objects myself.

Speech therapy has been started with Memphis, due to the fact that he seems uninterested completely in talking. He communicates mainly with hand gestures and grunts. Our little caveman. He is now nineteen months old, and should be making some attempt at vocal communication, but alas he loves to be difficult.

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.