tag:blogger.com,1999:blog-31805229383158206062024-03-12T21:50:34.409-05:00Memphis' journey through CDHThis is a blog following our son who was born on August 19, 2011 with a congenital diaphragmatic hernia. He was in the NICU at Children's Hospital in Birmingham for four months.Anonymoushttp://www.blogger.com/profile/10568942960597955121noreply@blogger.comBlogger132125tag:blogger.com,1999:blog-3180522938315820606.post-18779248885608927472015-03-11T07:34:00.000-05:002015-03-11T07:34:26.608-05:00Doing Well, an update about our little manI've been wanting to update the blog now for a while, just to let everyone know how our little guy is doing. Well I have some spare time and a lot to say, so now just where to start.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSAX25UdefCIjX_aVJXJ-rSqhwhTDHpr67fDgug3KJzOPZbkR0cBOgAwrk58-TDhyphenhyphenqqbrClkmRq1EubeeT1179CXUfDL-ONDXZ5OVVZ4I4wHeuWbMsApunAIsFJrATf8WkSzyGrUpSDw5H/s1600/10355573_985558576333_6357218939245058853_o.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSAX25UdefCIjX_aVJXJ-rSqhwhTDHpr67fDgug3KJzOPZbkR0cBOgAwrk58-TDhyphenhyphenqqbrClkmRq1EubeeT1179CXUfDL-ONDXZ5OVVZ4I4wHeuWbMsApunAIsFJrATf8WkSzyGrUpSDw5H/s1600/10355573_985558576333_6357218939245058853_o.jpg" height="213" width="320" /></a></div>
As you all know, one of last struggles have been Memphis' sight, hearing, and feeding. Well I am so glad to say that Memphis has been eating by mouth now for a few months! He loves very flavorful food, and avoids almost all sweets. Some of his favorites have been chips and salsa, popcorn, ramen noodles, and pickles. Yes, pickles. He will eat regular dill pickle slices until the whole jar is done. He fights Daddy every time he comes around and steals a bite of his popcorn. He fought for so long to be able to eat it, and now he wants to fight to not lose it. He doesn't mind trying hardly anything, but he is very quick to let you know if he doesn't like it. We still can't get him to take gummy vitamins by mouth but he is getting more and more tolerable to them every day. We actually notice a difference in his mood now when he is hungry. It's very much like those Snicker's commercials, he is a different little boy when his belly is empty. Every day is a struggle to just make sure that he doesn't eat too much junk food. The little man loves his cereal! (especially fruit loops)<br />
<br />
His hearing has been progressing good, and we don't expect any issues from it. He had started talking a while back, and now is a little talking machine. Some of his favorite words are huh, okay, and no. Just recently he started saying, what you say, when you don't respond to his huhs. Most of his speech is coming right along and it is so stinking cute, except now that he understands the power of NO. That may or may not be cute at all. Along with being able to talk though, he is also able to understand when Mommy or Daddy say no. He has also started calling us Mom and Dad, unless he is hurt or scared.<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiy711Eh6PGZ-aDs-5S2wG2n_w0ugCDaC3uTE5E_v_R6RkwYcg1BBlP5yurvoZP7zyzQzkUG2txW922OwY-_ced8koZ5_8id2zgrG1krSZk4qoD7QPp7ubCyLYDREHwSPmjYkcs0m4X-0mn/s1600/10631058_987004094503_5662592813801287999_o.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiy711Eh6PGZ-aDs-5S2wG2n_w0ugCDaC3uTE5E_v_R6RkwYcg1BBlP5yurvoZP7zyzQzkUG2txW922OwY-_ced8koZ5_8id2zgrG1krSZk4qoD7QPp7ubCyLYDREHwSPmjYkcs0m4X-0mn/s1600/10631058_987004094503_5662592813801287999_o.jpg" height="213" width="320" /></a>His eye sight is still a worry to us at this point. The strabismus affected eye has started drifted back outward now and the ophthalmologist has said that as good as our efforts were, they did not change the eye. It will continue to drift outward to what I expect would be almost its initial orientation. The doctor has mentioned doing another round of surgeries, but they would be only for cosmetic purposes. He has urged that we wait until right before he goes into kindergarten to do the operation, that way his peers won't have that to pick at him for. We are strongly considering this as we all know how mean kids can be. <br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGank6RcM2BTc2jJuyG6fk4vTFwTYjLf3e4KbaG4Tj4gkrn_2lY7heDjLWhC13_t8KVcu4gHYgn_bofLw0AhI8tTwhyphenhyphenGdc25lwTJiQNBhKwWtnNzgrBYOAj9m7oX_VjEQ4AUJf_pSXTLFS/s1600/10610835_1622953271264438_4251953413236601210_n.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGank6RcM2BTc2jJuyG6fk4vTFwTYjLf3e4KbaG4Tj4gkrn_2lY7heDjLWhC13_t8KVcu4gHYgn_bofLw0AhI8tTwhyphenhyphenGdc25lwTJiQNBhKwWtnNzgrBYOAj9m7oX_VjEQ4AUJf_pSXTLFS/s1600/10610835_1622953271264438_4251953413236601210_n.jpg" height="320" width="240" /></a></div>
Now onto the good stuff! Like I said earlier, he has been eating solid food, by mouth, for quite a while. Memphis' little stomach seems to be handling all of this just fine. We have the random tummy ache, and by far he may have more but he is just such a tough little boy. His lungs have been sustaining him now alone for quite a while. We have had a few small cold scares, but he has been able to fight them off with the help of a few breathing treatments. I imagine when he gets a little older a steroid inhaler and a rescue inhaler will be in order for him. Until those days he is still randomly using a nebulizer. He loves spending his days running around with the big kids until he is out of breath, and then just running some more.<br />
<br />
What a little tough boy though. We're not sure if it was due to the amount of pain he was in while in the hospital, the medicine he was given, or just a strong will, but this little man can take a hit and keep on going. We've seen him run into desks, fall off of chairs, put hot soup in his mouth and just keep going. I pinch him while we play and he doesn't even act like he notices it. Oh but if he gets in a little trouble, he turns on the water works. He has turned out to be one of the most caring, sharing, and sensitive little boys I've ever seen.<br />
<br />
Well everybody, that's about all I have in me for the day. Thanks for keeping Memphis in your thoughts! It means so much to us.<br />
<br />
<br />
<br />
<br />
<br />
<br />Anonymoushttp://www.blogger.com/profile/10568942960597955121noreply@blogger.com0tag:blogger.com,1999:blog-3180522938315820606.post-46398444550944335082014-01-07T09:45:00.000-06:002014-01-07T09:45:46.272-06:00An update after a long while.I know it has been a while since we updated everyone, so I figured we should. The family is doing great. Memphis has been mostly well, and dealing with winter adequately. He has been playing hard here recently, and just being a crazy little two year old. Rowan and Braden have been doing great as of recently as well. The cold weather and dark evenings have been restricting their play time, and they have been getting a bit stir crazy.<br />
<br />
Memphis' health has been good for the most part here recently, although we had our first experience with RSV. We went in with a sick little guy, who was having troubles breathing, and they admitted him in the hospital. His oxygen saturations were very low, and the little guy just needed some help with breathing. He spent the good part of a week just hanging out with mommy in the hospital bed, drifting in and out of sleep. Being back in the hospital just confirms his evident case of PTSD with medical facilities. He hated every part of being there, and every person that came to look at him. He made sure to let us know about it too. Poor sad little baby. He has fully recovered, and has managed to be a little sick ever since then. I think in reality the entire family has been a little sick all winter long.<br />
<br />
His eating had taken a great turn for the better previous to the hospitalization, as he was interested in trying almost everything. Especially things like soup, that he doesn't have to chew much. He has had exposure to a bunch of normally eating children his own age, and really wanted to follow their lead. Since the hospitalization, he has pretty much been back to normal with eating. Not wanting to try anything. He has his random moments, when it seems like you can trick him into eating something small, but they are short lived. We try and try, every day, but it is a slow process.<br />
<br />
Christmas went well for the whole family! Now to find somewhere to put the kids stuff. They all had a great time, and we spent the vacation time visiting with family and enjoying the break. We are all back to work, and the kids back to school. No more breaks for us.<br />
<br />
Well once again, thanks for reading!<br />
<br />
<br />Anonymoushttp://www.blogger.com/profile/10568942960597955121noreply@blogger.com6tag:blogger.com,1999:blog-3180522938315820606.post-70404019424248862182013-08-14T10:11:00.002-05:002013-08-14T10:11:58.828-05:00School and Birthday time!The past week or so has been crazy! With Rowan going to fifth grade, Braden going to Kindergarten. It has been wild. We're hoping Braden does well, but assume there are going to be some bumps in the road while he learns the rules. Michelle is definitely ready, but I'm sure she is sad to see the kiddos growing up so rapidly. All of the school supplies have been bought, Braden has met his teacher, and Rowan's orientation is later this week. They seem happy with their teachers. That's all we can ask.<br />
<br />
Memphis has been growing up too. He is constantly playing! Jumping, falling and wanting to be a big kid. The one downfall of this is that he doesn't want to be held down. Come feeding time, he is too busy to sit there and eat. Speaking of eating, he has decided that he doesn't need to eat at night. This is good and bad. During the night while he is attached to the pump, he decides to disconnect the line. Therefore, food goes everywhere, and his stomach ends up emptying all over the bed. Not a pretty sight or smell! Mommy has been trying hard to get all the food he needs over the day in his belly before he goes to bed, with good success. It has pushed his bed time back a little, but Memphis is ok with that! No more stinky, wet baby in the morning anymore.<br />
<br />
His language skills are growing everyday. He still shows very little interest in talking, but he has developed a few more words. Thank you and Thunder are some new ones. He basically just walks around grunting, signing, and saying "mommy, daddy" all the time. We love it. He is working super hard to get there, and so are we.<br />
<br />
His eating has come a long way. He no longer turns away food! He doesn't swallow it, but he doesn't turn it away either. He loves his water though, especially after a hot day playing outside. We took him along with us while we played tennis, and afterwards he couldn't get enough water.<br />
<br />
His kidney doctor has officially taken him off of blood pressure medicine now! His blood pressure is now normal. The doctor only wants to see him once a year now, just to make sure his kidneys are growing. There are a percentage of children with kidney damage that their kidneys don't develop right. Just another worry, but our little guy isn't worried. :)<br />
<br />
His second birthday is coming up this week. We are so excited! Thanks to everyone that follows our little man and has thought about him in his tough times.<br />
<br />Anonymoushttp://www.blogger.com/profile/10568942960597955121noreply@blogger.com10tag:blogger.com,1999:blog-3180522938315820606.post-48450312868537668612013-08-13T09:01:00.002-05:002013-08-13T09:01:48.470-05:00An old writing that I just dug upI was looking through my computer and found what I started writing when Memphis was put in the hospital. Its long and you don't have to read it. I can't even guarantee that it is written well, but I felt like I should put it here, so...<br />
<br />
<div dir="ltr" id="docs-internal-guid-3c01878e-77f7-9d0e-a59e-fa88644006da" style="line-height: 1; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: 'Helvetica Neue'; font-size: 16px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"> "Memphis Warren Tipton was born on august nineteenth at seven twenty five am. He weighed eight pounds three ounces. At birth he displayed a great difficulty in breathing and was immediately given oxygen by bag by the pediatrician on call, Dr. Davidson. After approximately two or three minutes of that they informed me that he would need to go into the NICU until he began breathing a little better. I followed him to the NICU, leaving Michelle in the operating room. When we got there they continued the breathing and the pediatrician informed me that he would probably have to be hooked up to a breathing machine until he got better. It was at this point that was told that the NICU wasn't officially open at that time and I would have to leave until it's opening at eight am. </span></div>
<div dir="ltr" style="line-height: 1; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: 'Helvetica Neue'; font-size: 16px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"> The walk down the hallway to the elevator was a painful one. Here I was completely useless while my baby boy was struggling just to get air. With my emotions running wild I entered the waiting room on the second floor labor and delivery are, with Wil and Danielle waiting on good news. I was so distraught that I couldn't even hardly speak, so I typed into my cell phone what had happened and handed it to Wil. The message simply stated that the baby wasn't healthy and they were taking him into the NICU for difficulty breathing.</span></div>
<div dir="ltr" style="line-height: 1; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: 'Helvetica Neue'; font-size: 16px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"> The wires and tubes were appalling to say the least. By the time got to the NICU Memphis had a breathing tube in his throat, two IVs in his belly button and various other sensors taped all over him. His face was still swollen from the birthing process I guess but he was having a very difficult time opening his eyes. His breath was short, hard and quick. Very labored. I was afraid. Afraid of what was happening. Afraid of touching him. Afraid that I may touch something I wasn't supposed to. That was all cleared away by a nurse, saying something as simple as "You can touch him".</span></div>
<div dir="ltr" style="line-height: 1; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: 'Helvetica Neue'; font-size: 16px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"> Then came the waiting, which seems is all I have been doing lately. I only had to wait about ten minutes for eight to roll around, but it seemed so long. I told Wil and Danielle that I would be back and headed back to the NICU. By the time I had reached the door in to unit the pediatrician was headed out. He stopped and said that he was just coming to find Michelle and I. He then motioned me into a room and said that we needed to talk. We sat down in the darkened room and he began speaking. He said that Memphis had been born with a defect. It was called congenital diaphragmatic hernia. To put it simply, his diaphragm had not formed correctly on his left side, and now his intestines and part of his stomach were in his chest cavity. He informed me that this was definitely not the issue with a baby born with this. The main issue is that the lungs are not developed correctly, especially the one on the left side. He ensured me that this is most definitely serious and it will require an effort by doctors and equipment that Huntsville hospital did not have. My heart stopped, after a moment and a few questions about the deformity we went to the surgical recovery to tell Michelle. As can be imagined she took the news the same way I did. She had only seen him once since the birth and that was only for a second when they wheeled him out to the NICU.</span></div>
<div dir="ltr" style="line-height: 1; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: 'Helvetica Neue'; font-size: 16px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"> The rest of the family had to be told. I had already told my mom through a text message, but that was nothing compared to in person. I stayed with Michelle until they let her out of recovery, but then I had to get the things from the car and inform the family of what was to come. We took a quick stop by the NICU to let Michelle see him again and then she went off to her room. When I stepped out of the elevator everyone was gathered around outside of the labor and delivery station waiting on me. The first person I saw was my son Braden, he yelled daddy! I completely lost it then. I swept him up, it was the first comfort I had felt since before the surgery. While holding him there I told Michelle's and my family that they were air lifting him to Birmingham as soon as they could. I sent them off to her room and made my way down to the car to get Michelle's bags.</span></div>
<div dir="ltr" style="line-height: 1; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: 'Helvetica Neue'; font-size: 16px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"> I had decided that I would follow him to Birmingham, someone needed to and I felt that I was that person. When I got up to Michelle's room I talked to her and made sure that she would be fine without me. When we finished discussing this I took family down one at a time to the NICU to see Memphis. The first to go was my mom. We walked there and went in to see him laying there, struggling for life, working so hard just to take such a tiny little breath. It was pitiful. After she got a minute in there we went back up and I took the rest of the family there one by one. Each time with the same explanation. "the doctor says it's very serious". "They don't see this deformity often." "It isn't the surgery that's serious as much as it is the underdeveloped lung." The same questions, the same answers. I felt like by the end of that day I could have went in front of a medical council and explained it to them. The day drug on until finally I found out that the transport was planning on being there to get Memphis at eleven, and I had to be there to sign papers to release him. While down in the NICU the nurse asked if I had taken any pictures. I informed her that I would take them later. Her response was simple and to the point, "If you want pictures take them now, he won't look this good after he gets there and they do the surgery".</span></div>
<div dir="ltr" style="line-height: 1; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: 'Helvetica Neue'; font-size: 16px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"> Just as they had promised the transport team showed up a little before eleven and I went down to find two HEMSI workers and two careflight workers. They can't land next to the children's center anymore so they have to land off site and ride an ambulance over from there. The two guys from careflight were great. They were quick with what they did and pleasant to talk to. I also got introduced to someone else while I was down there, a thirty year old nurse who had been born with CDH. He explained that we were going to one of the best places around to fix the deformity and that they had seen lots of progress in technology and success regarding CDH. By the time he had finished talking to me I had a huge weight lifted off of me. Not that was assure at that point that Memphis would live, but just that this has happened before, and people have survived it. The nurse, steadman, left and I informed the transport that I would be going to Birmingham and asked them the normal where and when. I also asked them if they could bring Memphis by Michelle's room so that she could see him for a minute. Which they did, they were operating on a limited amount of oxygen so they could only stop for a minute but it was no problem.</span></div>
<div dir="ltr" style="line-height: 1; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: 'Helvetica Neue'; font-size: 16px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"> Walking back to the room with the transport team reminded me of some tv show; Everyone was stopping, there were radios going off, people were parting in the hallway. Even up to the point that they put their key into the elevator and made it immediately come up to the floor we were on. As we pulled up to Michelle's room, they turned the bed around and wheeled him in. This was the first time that Braden got to see him. The transport team, especially the careflight guys, were the greatest when it came to Braden. They immediately responded to him, asking him questions and things like that. Then almost as quickly as they walked in they were gone. Promising to call me and let me know his status when they got there.</span></div>
<div dir="ltr" style="line-height: 1; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: 'Helvetica Neue'; font-size: 16px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"> Looking back on the stress that was Braden's birth, the unfortunate result of not being able to deliver naturally. That stress would be welcomed back with open arms in the replacement of this. It really isn't the fact that he was sicker anything of that matter. It is the fact that I was completely helpless. It was a tragic helplessness. Nothing I could do would make any difference, in actuality probably make it worse. Conquered. Destroyed. That's what had become of me' and within a matter of a few hours.</span></div>
<div dir="ltr" style="line-height: 1; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: 'Helvetica Neue'; font-size: 16px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"> Everyone had decided that Wil would come to Birmingham with me to help keep my head straight. This was most definitely for the better. My thinking was not straight at all. In hindsight I probably should have let him drive, but I was trying to get to my little boy.</span></div>
<div dir="ltr" style="line-height: 1; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: 'Helvetica Neue'; font-size: 16px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"> Wil and Danielle left to go pack for the night. Tom and Pamela left to get food. My mom left to get Rowan, who still had not heard the news since she was in school. Michelle and I were left there all alone. No crying, nothing. Just the sounds of the hospital filling in the gaps of silence. We talked a little about what I was going to do when I got to Birmingham, we talked a little about Memphis and the other two kids. I was distraught, she was distraught. We both had little to say that wasn't said with a simple touch.</span></div>
<div dir="ltr" style="line-height: 1; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: 'Helvetica Neue'; font-size: 16px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"> We ate some lunch and then planned on leaving. All arrangements had been made, and we were out of the door, only to be met by my mom and the kids coming off of the elevator. This stopped us completely. I had to explain it to Rowan before she went in the room and Michelle would be left with this unnerving task. I'm not sure if it really set in when I told her. She seemed worried, but seemed more upset when I told her that I was leaving. The last thing I wanted to do was upset her, but it was inevitable. She quickly got over it, but I still think it hurt her a little. I was on a mission so I told her what I needed to tell her and we got on the road with no plans of stopping.</span></div>
<div dir="ltr" style="line-height: 1; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: 'Helvetica Neue'; font-size: 16px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"> When we arrived all I knew was that I was going to the seventh floor. I asked the people up front at the welcome desk where to go. Wil and I made out trek up to the seventh floor. When got there I was greeted by a locked door with a buzzer. I buzzed in and was quickly told to actually wash my hands, sanitizer was not allowed. There he was, hooked up to all the same type of machines. The room was dark, with beeps and buzzes all around. The staff was very friendly and informative. The first person I met was the nurse, Frannie. She was very informative and helpful. After that, I met a huge number of people; surgeons, nurses, surgical fellows and all kinds of people. The accommodations were there including a cut rate on a hotel room and being put on a waiting list for the Ronald McDonald house.</span></div>
<div dir="ltr" style="line-height: 1; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: 'Helvetica Neue'; font-size: 16px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"> I was sat down by a surgical fellow who I couldn't tell you the name of. He spoke very positively for Memphis, explaining all of the steps they could do to help him. Everything from a ventilator, nitric oxide, to an oscillator. He also explained that everything that could be done to assist him in breathing had not been done yet, so there were a lot of "tricks" that could still be done. The last of all of them was an effort called ECMO, but he was no where near that. They called him a wild child because of when they brought him in he was trying to pull all of the tubes out. Sedation was necessary.</span></div>
<div dir="ltr" style="line-height: 1; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: 'Helvetica Neue'; font-size: 16px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"> The next doctor I met was Dr. Scott Anderson. He was the surgeon that everyone had spoke of as kind of being the expert on CDH. His talk to me was a little less than positive. He was telling me everything that could go wrong, but also encouraging me not to be extremely positive about his prognosis. You see, CDH babies can change very quickly, and he was right. Memphis' condition degraded quickly. Within a few hours his ventilator settings had been raised to the highest allowable settings. He medicine had been raised to a point that no more could be used. We went to get some food after a while and by the time we had gotten back he was put on nitric oxide. This went on for the remainder of the day and it was like a roller coaster. The next day he was better, but they called this the honeymoon, they expect them to do OK for the first few days and then get worse. When Michelle got to Birmingham on Saturday he was hooked up on pretty much everything he could be, everything except the oscillator and ECMO. At the end of Saturday he was on the oscillator, and that was horrible. It looked like he was sitting on one of those beds that vibrate. It was shaking everywhere. Then, somewhere around ten pm, came the ECMO. It was supposed to be a last ditch effort and here we were two days in and they were doing it.</span></div>
<div dir="ltr" style="line-height: 1; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: 'Helvetica Neue'; font-size: 16px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"> A simple surgery. Nothing more. This simple surgery involved putting my baby on blood thinners and pain medicines (which he had already had to sedate him), cutting a hole in his shoulder and placing a cannula into his jugular vein, and this was the better of the two different types of ECMO. After a few minutes of emotions and visiting we were hurried out for the surgery. As we sat in the waiting room holding each other, minutes turned to hours. Our emotions and the long day prior had finally exhausted us. We nodded off. Awoken by the surgeon we listened to him tell us how everything went fine and now it has become a waiting game. Five days to five weeks. Anything can happen. We went inside to see him and there was the shock. He was laying there head turned, with tubes, large tubes, going into a gauze patch on his neck. Deep red flowing through them. All of this hooked up to a gigantic machine with numbers flashing everywhere. A large monitor hooked up to it with at least ten numbers going up and down. All was well, except us.</span></div>
<div dir="ltr" style="line-height: 1; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: 'Helvetica Neue'; font-size: 16px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"> The next day seemed great! He responded very well and every number that could go down or get better did. They were weening him off of the dopamine and the nitric oxide. Everything was well. Hope! As was explained though, everything can change quickly and it did. By that evening his numbers had gone up and the machine was working harder for him than it previously was. We left him in the hands of the nurses.</span></div>
<div dir="ltr" style="line-height: 1; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: 'Helvetica Neue'; font-size: 16px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"> Monday was harder than I had expected. We did a lot of sitting around while Michelle pumped. The times that we did see him he was about the same. He seemed to be getting worse throughout the day. Just as he had done the day before, he got worse in the evening.</span></div>
<div dir="ltr" style="line-height: 1; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: 'Helvetica Neue'; font-size: 16px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"> The next few days have been the worst since we've been here. They have put a bili light up over him to reduce his bilirubin. He basically has jaundice. Since he has a blood and Michelle has o blood there is a conflict between the two bloods. Nothing unusual, but he has to stay under this "tanning bed" for a few days and where a mask that is attached to his head.</span></div>
<div dir="ltr" style="line-height: 1; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: 'Helvetica Neue'; font-size: 16px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"> He has started showing temper. They have had to sedate him numerous times for flailing around. He now has a regular scheduled dose of a sedative due to it. The more that he moves around, the weaker his numbers get. We were basically told not to touch him due to aggravation. Even our speaking seems to get him agitated. Wednesday, when we got to the NICU, he was waking up so at that point we got to uncover his eyes and turn off the bililight. He opened his eyes and looked at us. During these few minutes his falling numbers went back up and he was doing great. His eyes seemed so sad. He could only open the right eye due to the fluids gathering in his cells, but he opened that one up wide. He showed signs of being stimulated and would follow my face and Michelle's face when we moved. It hit me on a emotional level that I had a very hard time controlling. As soon as they covered his eyes up he started declining again. It's so hard looking someone in the eye that you know is suffering such discomfort, especially when that someone is your child.</span></div>
<div dir="ltr" style="line-height: 1; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: 'Helvetica Neue'; font-size: 16px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"> Thursday morning I asked the question of what has to happen for him to get off of ECMO and get the corrective surgery. The pediatrician said the first step is getting the extra fluids off of him. He is on a diuretic called lasics, and was doing well, but they said he was losing too much weight and now they backed off of it. The next step is weening him off of the ECMO pump itself. Right now it is running about 300, it needs to be running a constant 50 before he can be considered. If both of these criteria are met then they can attempt to take him off with ventilator assist. We asked all these questions for the simple reason of when I'm asked the same question, I can answer it. I think the most aggravating thing was said to us today. We were asking about the numbers and what all of them meant. After the nurse practitioner told us all of the information, she told us not to worry about the numbers and just love on him. It's very difficult to love on someone when you cant touch him or hardly even talk to him.</span></div>
<div dir="ltr" style="line-height: 1; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: 'Helvetica Neue'; font-size: 16px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"> They informed us a few days later that his circuit needed changing out. These are the tubes that the blood flows through, so basically they change out the entire machine. Clots build up inside the tubes and eventually this is necessary. The downside to all of this is that he will digress in his improvements. Some of the weight that he had lost of his swelling will come back and this may not improve his falling numbers. I personally felt that they waited too long to do this, due to not having enough machines ready at the time. Two other children had just been brought into NICU, and they both were ECMO candidates. One of the children actually had a diaphragmatic hernia also. The pump was changed early the next morning, I believe it was Monday, but his numbers continued to decline, falling farther and farther into the unacceptable range. The numbers that we were originally not to be under ninety were now at eighty-five. The nurses continued to tell us that this was ok and they told us that as long as it didn't fall below eighty-five, it was ok. The number fell to eighty very quickly, they changed the parameters to below eighty. It seemed every time that his numbers changed, so did the parameters that he was allowed to operate under.</span></div>
<div dir="ltr" style="line-height: 1; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: 'Helvetica Neue'; font-size: 16px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"> It was desperate by that night, his numbers had fallen much lower and were fluctuating up and down with a great variance. The doctor came and talked to us and told us that he would need his ECMO changed from VV to VA. This procedure would be another surgery just like the first and would also set him back again. The risks were the same and he explained that the survival rate was no lower by being changed. It actually would increase the ability to keep him more stable. The risks involved were changed now though, instead of just losing the one vein, he would also lose an artery after ECMO was over. All of Memphis' blood flow through those two vessels would have to find collateral routes, this is typical with these babies, and mostly it works out this way.</span></div>
<div dir="ltr" style="line-height: 1; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: 'Helvetica Neue'; font-size: 16px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"> We waited in the waiting area for about two hours, and the typical waiting room routine occurred. The doctor came out and told us that he was doing fine, and that everything went as planned. The changes were immediate. His flow had increased dramatically, but also did his critical numbers. Everything was much better. We were relieved for a while.</span></div>
<div dir="ltr" style="line-height: 1; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: 'Helvetica Neue'; font-size: 16px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"> The next few days they focused on his water weight, which was an enormous task. He had gained around six pounds of weight due to fluids and a systemic inflammatory response."</span></div>
<br /><span style="background-color: transparent; color: black; font-family: 'Helvetica Neue'; font-size: 16px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"></span><div dir="ltr" style="line-height: 1; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: 'Helvetica Neue'; font-size: 16px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">The rest of the story is followed on the Blog. I stopped writing this very shortly before I began writing in Blogger, so I felt no need to continue on this.</span></div>
<div dir="ltr" style="line-height: 1; margin-bottom: 0pt; margin-top: 0pt;">
<br /></div>
<div dir="ltr" style="line-height: 1; margin-bottom: 0pt; margin-top: 0pt;">
<br /></div>
<div dir="ltr" style="line-height: 1; margin-bottom: 0pt; margin-top: 0pt;">
<span style="font-family: Times,"Times New Roman",serif;"><span style="font-size: small;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">There it is.</span></span></span></div>
<div dir="ltr" style="line-height: 1; margin-bottom: 0pt; margin-top: 0pt;">
<span style="font-family: Times,"Times New Roman",serif;"><span style="font-size: small;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"><br /></span></span></span></div>
<div dir="ltr" style="line-height: 1; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: 'Helvetica Neue'; font-size: 16px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"><span style="font-family: Times,"Times New Roman",serif;"><span style="font-size: small;">Thanks for reading!</span></span></span></div>
Anonymoushttp://www.blogger.com/profile/10568942960597955121noreply@blogger.com2tag:blogger.com,1999:blog-3180522938315820606.post-65356920657450584122013-08-12T11:55:00.002-05:002013-08-12T11:55:53.816-05:00I know this is late notice, but I just never got around to posting it here. So here it goes...<br />
<br />
<br />
<span itemprop="description"><span class="fsl">Come make a splash with Memphis. We are having a life celebration at Monte Sano Pool Huntsville AL <br /> <br /> Date/Time: 18 August 2013 2:00-4:00<br /> <br /> This will celebrate Memphis 2 year birthday which is 19 August. He is such a little miracle!! <span class="text_exposed_show"><br /> We would like to invite all friends of Memphis to join in this celebration. <br /> <br /> Memphis has many friends who have been a part of his life and even contributed to making his life possible!!<br /> We hope to see as many as we can on 18 August. <br /> <br /> This will be a pool party so bring your bathing suits and a chair.<br /> <br /> The pool is on Monte Sano Mountain. At the gate, tell them you are there for Memphis Birthday.<br /> <br /> Please RSVP for planning purposes to either Pamela Knight pjk29@comcast.net or Michelle Tipton at 256-679-9911<br /> <br />
No gifts please. If you want to do anything, make a donation to either
Children's Hospital Birmingham or Ronald McDonald House. They were so
wonderful to Memphis and his family.!</span></span></span><br />
<span itemprop="description"><span class="fsl"><span class="text_exposed_show"> </span></span></span>Anonymoushttp://www.blogger.com/profile/10568942960597955121noreply@blogger.com1tag:blogger.com,1999:blog-3180522938315820606.post-56136876801681995372013-07-19T08:12:00.001-05:002013-07-19T08:12:36.489-05:00Just a picture<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="height: 382px; margin-left: auto; margin-right: auto; text-align: center; width: 512px;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgS1PaguT8schA69U97SNOXNuK_9VzF4dFA_W1hMLVey3AGTHm_QiVC2OxXACl3hR0pPC4NRwIMCZ-NoaNPHX4Ar_UXhXBPOJ-TheA_AQjBNuZKigrnjOtjBcLgoEYD7WDoHSGeQEa49qfk/s1600/2013-07-09+18.49.13.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgS1PaguT8schA69U97SNOXNuK_9VzF4dFA_W1hMLVey3AGTHm_QiVC2OxXACl3hR0pPC4NRwIMCZ-NoaNPHX4Ar_UXhXBPOJ-TheA_AQjBNuZKigrnjOtjBcLgoEYD7WDoHSGeQEa49qfk/s320/2013-07-09+18.49.13.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Memphis wearing his big boy shoes</td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
</tbody></table>
Just thought I would share this pic. It makes me smile!Anonymoushttp://www.blogger.com/profile/10568942960597955121noreply@blogger.com1tag:blogger.com,1999:blog-3180522938315820606.post-12381755544917548262013-07-18T14:48:00.000-05:002013-07-18T14:48:12.242-05:00Just a quick update on the famJust wanted to share a little time with the readers about the rest of the family. So much time is spent with Memphis that we tend to overlook ourselves sometime. The days string together, and the time disappears.<br />
<br />
All of the kids are doing great! To start with the oldest, Rowan is doing wonderfully. She spends most of her day helping mom with Memphis, playing with friends, and playing computer. She plays on the computer mostly. Minecraft is her current addiction, but on the positive side, it is familiarizing her with computers. I have given the ultimatum to her that if she wants to spend a lot of time on the computer, she needs to starts learning how to work with it. She has developed a good understanding of some basic concepts, and I have started getting her into basic programming concepts. She is off to camp next week. I'm sure she is looking forward to that.<br />
<br />
Braden has just been Braden. Playing all day, wanting to play all night. He spends most of his day helping mom, and playing with friends outside. He and Rowan spent six weeks of summer on our local swim team, which in those six weeks he has developed a confidence in the water. Something that we demand from our children. He has been good and growing like a weed!<br />
<br />
Michelle has been super busy! With all the kids home during the summer, and with our nephew there too during the day, she has a hectic day. Fortunately they aren't all babies, so the big kids can help some too. The evening is her break, until its time to put little Memphis to bed, which he has grown so accustom to that he does not want daddy to do it. He loves to have me to sit in there with them, but it is Mommy's job to put him to bed. She always wanted a momma's boy, now shes got one.<br />
<br />
I am busy with a new job. I just started working at Curse.com, as a junior system administrator. Great workplace and great people! Other than putting in my time at work, I do the same as the kids. Help with Memphis and the house, and play computer! Not much more that that.<br />
<br />
Thanks for reading! Anonymoushttp://www.blogger.com/profile/10568942960597955121noreply@blogger.com1tag:blogger.com,1999:blog-3180522938315820606.post-47213007494964946522013-07-17T09:45:00.000-05:002013-07-17T09:45:06.039-05:00Doing so well!Little Memphis is doing so well! He is almost two years old now, and is almost a normal little two year old guy. Running, playing, and spending most of the day in a glee filled little wonderland. He seems to be wanting to explore more, break the rules more. Everything a two year old should want!<br />
<br />
Over the last few weeks, Memphis has begun saying little things here and there. He now says didi for daddy, hothot for hot, mama for mommy, and even a few others. The little guy still signs, and signs in accordance with some of the words he is saying. He can't say please, but he will sign please and say didi for "please, daddy". So many achievements for this little guy.<br />
<br />
He is still the happiest little guy around, and loves his family. Braden of course is his favorite unless he is hurt. Then he goes for mommy. Just yesterday, Braden was dancing in the living room, and here comes Memphis. Stomping around right behind him!<br />
<br />
<br />
Memphis' birthday is August nineteenth, and we are planning a party for him. Everyone is welcome that can make it. I will post more about this as I know, but the tentative date is August eighteenth.<br />
<br />
Thanks for following little Memphis!Anonymoushttp://www.blogger.com/profile/10568942960597955121noreply@blogger.com3tag:blogger.com,1999:blog-3180522938315820606.post-60238776407480408212013-06-18T06:47:00.001-05:002013-06-18T06:47:10.585-05:00Summer is here!<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkeQalOVYsGeORGZdJF5DSx2lf7mB-CBzgFupw8cyJNQBXEKv5_Ao1BYyOp59cDRS2VGhP4ngmh_VLy9g0x5gDriwBIWlEjepinXLeE44z2hk4DgcULKG4Z4oeRUIG6e2CXf6Sow5_MOqD/s1600/photo+2.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjkeQalOVYsGeORGZdJF5DSx2lf7mB-CBzgFupw8cyJNQBXEKv5_Ao1BYyOp59cDRS2VGhP4ngmh_VLy9g0x5gDriwBIWlEjepinXLeE44z2hk4DgcULKG4Z4oeRUIG6e2CXf6Sow5_MOqD/s320/photo+2.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Memphis playing with his floaties</td></tr>
</tbody></table>
Memphis has been doing very well and enjoying summer. He is starting to vocalize himself somewhat, but everything still has the same basic B or D sound to it. Everyday he is getting so much better at signing though. He now signs book, and he strings signs together. We are so proud of our little man. His favorite thing about summer so far has been water. He loves the pool! I'm pretty sure he just thinks it's a big bath, but nonetheless he loves it. The whole family went downtown over last weekend to play in a small water area. You know the type, it sprays water up from the concrete in about a dozen places. While Braden and Rowan sat around, Memphis was running, laughing and just absolutely loving it!<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYdlIT50j9DHplTjRP5TufFc2tp-KbUQ66SXRzoBBqyyGtUhlt47J2H85airq5_wgL1h1WDXX6wSMxoqI9pOSifHgwM4R962gobhoLsebeQCSMf-VJDVnsTYa0L1mQTXrADXZ0kRkwoAmp/s1600/photo+1+(1).JPG" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjYdlIT50j9DHplTjRP5TufFc2tp-KbUQ66SXRzoBBqyyGtUhlt47J2H85airq5_wgL1h1WDXX6wSMxoqI9pOSifHgwM4R962gobhoLsebeQCSMf-VJDVnsTYa0L1mQTXrADXZ0kRkwoAmp/s320/photo+1+(1).JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Just lounging in the sun!</td></tr>
</tbody></table>
<br /><div>
<br /></div>
<div>
<br /></div>
<div>
<br /></div>
<div>
<br /></div>
<div>
<br /></div>
<div>
<br /></div>
<div>
Memphis absolutely loves the outside, and we intend on letting him play out in it as much as we can!</div>
<div>
<br /></div>
<div>
Thanks for reading</div>
Anonymoushttp://www.blogger.com/profile/10568942960597955121noreply@blogger.com2tag:blogger.com,1999:blog-3180522938315820606.post-2225474796341477612013-06-01T15:33:00.000-05:002013-06-01T15:33:30.019-05:00Some funJust a short video of Braden and Memphis playing for those of you that are not on my facebook.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/jpdT8-4zyxM?feature=player_embedded' frameborder='0'></iframe></div>
<br />Anonymoushttp://www.blogger.com/profile/10568942960597955121noreply@blogger.com1tag:blogger.com,1999:blog-3180522938315820606.post-1459799910700574112013-05-31T20:07:00.004-05:002013-05-31T20:07:58.371-05:00Small, but good!Hello all!<br />
<br />
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.<br />
<br />
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! <br />
<br />
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.<br />
<br />
Until next time.<br />
<br />
If you want more information regarding CDH you can always visit <a href="http://www.cherubs-cdh.org/" target="_blank">http://www.cherubs-cdh.org/</a>Anonymoushttp://www.blogger.com/profile/10568942960597955121noreply@blogger.com2tag:blogger.com,1999:blog-3180522938315820606.post-58317522226387847662013-05-19T10:59:00.001-05:002013-05-19T10:59:25.191-05:00Everyday life, and everything is goodHey 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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
Thanks for reading! Anonymoushttp://www.blogger.com/profile/10568942960597955121noreply@blogger.com3tag:blogger.com,1999:blog-3180522938315820606.post-40713739591229486952013-02-27T11:07:00.000-06:002013-02-27T11:07:23.126-06:00StrabismusWe 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.<br />
<br />
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.<br />
<br />
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.Anonymoushttp://www.blogger.com/profile/10568942960597955121noreply@blogger.com4tag:blogger.com,1999:blog-3180522938315820606.post-84367519229534012662013-01-23T07:13:00.000-06:002013-01-23T07:14:08.571-06:00Surgery updateSorry 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.<br />
<br />
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.<br />
<br />
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.Anonymoushttp://www.blogger.com/profile/10568942960597955121noreply@blogger.com3tag:blogger.com,1999:blog-3180522938315820606.post-25824168174012015812012-12-17T04:49:00.003-06:002012-12-17T04:49:54.517-06:00A small surgeryMemphis 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.<br />
<br />
<br />Anonymoushttp://www.blogger.com/profile/10568942960597955121noreply@blogger.com1tag:blogger.com,1999:blog-3180522938315820606.post-47096204957921216362012-11-27T18:19:00.000-06:002012-11-27T18:19:23.829-06:00Another Hurdle<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiJFqLfHawlGk5lrJv1trk2ryJPCiImfBmCqN13CFGwO6WjAlZ-nEu_PVTczhs7sd4-HOtj_7ZZKOi1TgRvp2wBYsrqZcLyAkyYwGn5MPlZbNNXBOk7-dK2HRI1QF9gAbj5TRNn7XGkvEp/s1600/DSC_0028.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiJFqLfHawlGk5lrJv1trk2ryJPCiImfBmCqN13CFGwO6WjAlZ-nEu_PVTczhs7sd4-HOtj_7ZZKOi1TgRvp2wBYsrqZcLyAkyYwGn5MPlZbNNXBOk7-dK2HRI1QF9gAbj5TRNn7XGkvEp/s320/DSC_0028.JPG" width="212" /></a>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"). <br />
<br />
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). <br />
<br />
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.<br />
<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwwZMFdmoHChFIR-4Br8nwdlA3KnZ1wGti43RnDTCn7yASwp7E153Jf1n_N1XlUZUeZ7Hdvm9SPynfYrfzkOOZzGH3N8_hqiil_QbdzyNm0VHxe5INN8gVxSfwOjRBWjKRGSQcHTFLwyDQ/s1600/DSC_0034.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwwZMFdmoHChFIR-4Br8nwdlA3KnZ1wGti43RnDTCn7yASwp7E153Jf1n_N1XlUZUeZ7Hdvm9SPynfYrfzkOOZzGH3N8_hqiil_QbdzyNm0VHxe5INN8gVxSfwOjRBWjKRGSQcHTFLwyDQ/s320/DSC_0034.JPG" width="320" /></a>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. <br />
<br />
SO, this is Memphis' new hurdle in life. I guess there always has to be a hurdle?<br />
<br />
Aside from this, Memphis is doing great! He is all over the rooms and into every drawer/cabinet keeping mom and dad super busy.<br />
<br />
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.<br />
<br />
Ohhhh Memphis, What a wonderful little boy :-) <br />
<br />
<br />Anonymoushttp://www.blogger.com/profile/10568942960597955121noreply@blogger.com2tag:blogger.com,1999:blog-3180522938315820606.post-32195739942741980712012-09-27T13:37:00.000-05:002012-09-27T13:37:14.732-05:00Memphis at 1 Year!!<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkHJFhtDq9M_xXzz9BgvZqDTDnjK-G4vgbzZjekKGZRrtnQdTuw6Id__k_hV03qWyPBQbgyq4g5AENKOiJmfKAzK7d7lfi0Plc6_WKZEPgEwCzjCNiemZCSnrFC4rz_oJAop40HRelOmlw/s1600/DSC_0022.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="212" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkHJFhtDq9M_xXzz9BgvZqDTDnjK-G4vgbzZjekKGZRrtnQdTuw6Id__k_hV03qWyPBQbgyq4g5AENKOiJmfKAzK7d7lfi0Plc6_WKZEPgEwCzjCNiemZCSnrFC4rz_oJAop40HRelOmlw/s320/DSC_0022.JPG" width="320" /></a></div>
<!--[if gte mso 9]><xml>
<w:WordDocument>
<w:View>Normal</w:View>
<w:Zoom>0</w:Zoom>
<w:TrackMoves/>
<w:TrackFormatting/>
<w:PunctuationKerning/>
<w:ValidateAgainstSchemas/>
<w:SaveIfXMLInvalid>false</w:SaveIfXMLInvalid>
<w:IgnoreMixedContent>false</w:IgnoreMixedContent>
<w:AlwaysShowPlaceholderText>false</w:AlwaysShowPlaceholderText>
<w:DoNotPromoteQF/>
<w:LidThemeOther>EN-US</w:LidThemeOther>
<w:LidThemeAsian>X-NONE</w:LidThemeAsian>
<w:LidThemeComplexScript>X-NONE</w:LidThemeComplexScript>
<w:Compatibility>
<w:BreakWrappedTables/>
<w:SnapToGridInCell/>
<w:WrapTextWithPunct/>
<w:UseAsianBreakRules/>
<w:DontGrowAutofit/>
<w:SplitPgBreakAndParaMark/>
<w:DontVertAlignCellWithSp/>
<w:DontBreakConstrainedForcedTables/>
<w:DontVertAlignInTxbx/>
<w:Word11KerningPairs/>
<w:CachedColBalance/>
</w:Compatibility>
<w:BrowserLevel>MicrosoftInternetExplorer4</w:BrowserLevel>
<m:mathPr>
<m:mathFont m:val="Cambria Math"/>
<m:brkBin m:val="before"/>
<m:brkBinSub m:val="--"/>
<m:smallFrac m:val="off"/>
<m:dispDef/>
<m:lMargin m:val="0"/>
<m:rMargin m:val="0"/>
<m:defJc m:val="centerGroup"/>
<m:wrapIndent m:val="1440"/>
<m:intLim m:val="subSup"/>
<m:naryLim m:val="undOvr"/>
</m:mathPr></w:WordDocument>
</xml><![endif]-->
Memphis turned one on August 19, 2012!!!!!<br />
<br />
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.<br />
<br />
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. <br />
<br />
Memphis is beginning to babble.<span style="mso-spacerun: yes;"> </span>He is
now saying Da Da Da, Bu Bu Bu, and Hi.<span style="mso-spacerun: yes;">
</span>He is also waving goodbye and clapping his heads to say YAY.<span style="mso-spacerun: yes;"> </span><span style="mso-spacerun: yes;"> </span>He is
very expressive with his facial expressions.<span style="mso-spacerun: yes;">
</span>He is so cute when he is told No and doesn't like it. <br />
<br />
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<span style="mso-spacerun: yes;"> </span>are not big
fans of that idea. Would you give your typical child processed nutrition from a
can or whole foods?<span style="mso-spacerun: yes;"> </span>We have decided to
blenderize whole foods instead.<span style="mso-spacerun: yes;"> </span>Much
healthier in our opinion. We did try and appease the doctors by giving
pediasure a try along with blenderized meals.<span style="mso-spacerun: yes;">
</span>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.<span style="mso-spacerun: yes;"> </span>We hope that giving Memphis
blended whole foods will help him develop a taste for food.<span style="mso-spacerun: yes;"> </span>We are still going to look for some type of
product like pediasure that Memphis can tolerate for on the go purposes. <br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCrMeQhaBhU053HRujWsJ5pnT8740zfOIrm2FojHHyJxcOlr2QNj-P9hhcL1Z_af3YRZdQf-9huY8dLbhvnQmjyrf1njLXsFLV4U-k68kcilwOUUzuLkXmLjl3ngIGbyuPzeWQI5iHGw2-/s1600/DSC_0002.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCrMeQhaBhU053HRujWsJ5pnT8740zfOIrm2FojHHyJxcOlr2QNj-P9hhcL1Z_af3YRZdQf-9huY8dLbhvnQmjyrf1njLXsFLV4U-k68kcilwOUUzuLkXmLjl3ngIGbyuPzeWQI5iHGw2-/s320/DSC_0002.JPG" width="212" /></a></div>
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".<span style="mso-spacerun: yes;"> </span>He is a beautiful, happy, stubborn,
hard <span style="mso-spacerun: yes;"> </span>headed One year old child. <br />
<!--[if gte mso 9]><xml>
<w:LatentStyles DefLockedState="false" DefUnhideWhenUsed="true"
DefSemiHidden="true" DefQFormat="false" DefPriority="99"
LatentStyleCount="267">
<w:LsdException Locked="false" Priority="0" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Normal"/>
<w:LsdException Locked="false" Priority="9" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="heading 1"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 2"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 3"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 4"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 5"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 6"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 7"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 8"/>
<w:LsdException Locked="false" Priority="9" QFormat="true" Name="heading 9"/>
<w:LsdException Locked="false" Priority="39" Name="toc 1"/>
<w:LsdException Locked="false" Priority="39" Name="toc 2"/>
<w:LsdException Locked="false" Priority="39" Name="toc 3"/>
<w:LsdException Locked="false" Priority="39" Name="toc 4"/>
<w:LsdException Locked="false" Priority="39" Name="toc 5"/>
<w:LsdException Locked="false" Priority="39" Name="toc 6"/>
<w:LsdException Locked="false" Priority="39" Name="toc 7"/>
<w:LsdException Locked="false" Priority="39" Name="toc 8"/>
<w:LsdException Locked="false" Priority="39" Name="toc 9"/>
<w:LsdException Locked="false" Priority="35" QFormat="true" Name="caption"/>
<w:LsdException Locked="false" Priority="10" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Title"/>
<w:LsdException Locked="false" Priority="1" Name="Default Paragraph Font"/>
<w:LsdException Locked="false" Priority="11" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Subtitle"/>
<w:LsdException Locked="false" Priority="22" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Strong"/>
<w:LsdException Locked="false" Priority="20" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Emphasis"/>
<w:LsdException Locked="false" Priority="59" SemiHidden="false"
UnhideWhenUsed="false" Name="Table Grid"/>
<w:LsdException Locked="false" UnhideWhenUsed="false" Name="Placeholder Text"/>
<w:LsdException Locked="false" Priority="1" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="No Spacing"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 1"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 1"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 1"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 1"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 1"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 1"/>
<w:LsdException Locked="false" UnhideWhenUsed="false" Name="Revision"/>
<w:LsdException Locked="false" Priority="34" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="List Paragraph"/>
<w:LsdException Locked="false" Priority="29" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Quote"/>
<w:LsdException Locked="false" Priority="30" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Intense Quote"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 1"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 1"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 1"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 1"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 1"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 1"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 1"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 1"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 2"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 2"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 2"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 2"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 2"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 2"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 2"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 2"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 2"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 2"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 2"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 2"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 2"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 2"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 3"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 3"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 3"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 3"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 3"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 3"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 3"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 3"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 3"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 3"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 3"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 3"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 3"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 3"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 4"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 4"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 4"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 4"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 4"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 4"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 4"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 4"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 4"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 4"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 4"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 4"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 4"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 4"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 5"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 5"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 5"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 5"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 5"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 5"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 5"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 5"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 5"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 5"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 5"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 5"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 5"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 5"/>
<w:LsdException Locked="false" Priority="60" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Shading Accent 6"/>
<w:LsdException Locked="false" Priority="61" SemiHidden="false"
UnhideWhenUsed="false" Name="Light List Accent 6"/>
<w:LsdException Locked="false" Priority="62" SemiHidden="false"
UnhideWhenUsed="false" Name="Light Grid Accent 6"/>
<w:LsdException Locked="false" Priority="63" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 1 Accent 6"/>
<w:LsdException Locked="false" Priority="64" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Shading 2 Accent 6"/>
<w:LsdException Locked="false" Priority="65" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 1 Accent 6"/>
<w:LsdException Locked="false" Priority="66" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium List 2 Accent 6"/>
<w:LsdException Locked="false" Priority="67" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 1 Accent 6"/>
<w:LsdException Locked="false" Priority="68" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 2 Accent 6"/>
<w:LsdException Locked="false" Priority="69" SemiHidden="false"
UnhideWhenUsed="false" Name="Medium Grid 3 Accent 6"/>
<w:LsdException Locked="false" Priority="70" SemiHidden="false"
UnhideWhenUsed="false" Name="Dark List Accent 6"/>
<w:LsdException Locked="false" Priority="71" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Shading Accent 6"/>
<w:LsdException Locked="false" Priority="72" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful List Accent 6"/>
<w:LsdException Locked="false" Priority="73" SemiHidden="false"
UnhideWhenUsed="false" Name="Colorful Grid Accent 6"/>
<w:LsdException Locked="false" Priority="19" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Subtle Emphasis"/>
<w:LsdException Locked="false" Priority="21" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Intense Emphasis"/>
<w:LsdException Locked="false" Priority="31" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Subtle Reference"/>
<w:LsdException Locked="false" Priority="32" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Intense Reference"/>
<w:LsdException Locked="false" Priority="33" SemiHidden="false"
UnhideWhenUsed="false" QFormat="true" Name="Book Title"/>
<w:LsdException Locked="false" Priority="37" Name="Bibliography"/>
<w:LsdException Locked="false" Priority="39" QFormat="true" Name="TOC Heading"/>
</w:LatentStyles>
</xml><![endif]--><!--[if gte mso 10]>
<style>
/* Style Definitions */
table.MsoNormalTable
{mso-style-name:"Table Normal";
mso-tstyle-rowband-size:0;
mso-tstyle-colband-size:0;
mso-style-noshow:yes;
mso-style-priority:99;
mso-style-qformat:yes;
mso-style-parent:"";
mso-padding-alt:0in 5.4pt 0in 5.4pt;
mso-para-margin-top:0in;
mso-para-margin-right:0in;
mso-para-margin-bottom:10.0pt;
mso-para-margin-left:0in;
line-height:115%;
mso-pagination:widow-orphan;
font-size:11.0pt;
font-family:"Calibri","sans-serif";
mso-ascii-font-family:Calibri;
mso-ascii-theme-font:minor-latin;
mso-fareast-font-family:"Times New Roman";
mso-fareast-theme-font:minor-fareast;
mso-hansi-font-family:Calibri;
mso-hansi-theme-font:minor-latin;}
</style>
<![endif]-->Anonymoushttp://www.blogger.com/profile/10568942960597955121noreply@blogger.com0tag:blogger.com,1999:blog-3180522938315820606.post-3636490748413080982012-08-27T19:37:00.000-05:002012-08-27T19:37:54.290-05:00A long needed update<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgnqmMibnb5z35zzfqg-PMLHy6fOPauopi8e9OoTnhuehyphenhyphenRMq55Df_31b9Ss72GUOEqmtQS76V8veeaCqm1w8uNBiUErp4-mKvLHuT8uHsEM9v52x9dUMMOvDWVwXJmu_xlFgMNngsg23C/s1600/Memphis+standing.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhgnqmMibnb5z35zzfqg-PMLHy6fOPauopi8e9OoTnhuehyphenhyphenRMq55Df_31b9Ss72GUOEqmtQS76V8veeaCqm1w8uNBiUErp4-mKvLHuT8uHsEM9v52x9dUMMOvDWVwXJmu_xlFgMNngsg23C/s320/Memphis+standing.JPG" width="240" /></a>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 <br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjw_qVUz_u9IIW8Rwtahkn3_vgw3AddYksD5FwJI2znopngkuilmHB2zoFjyj7lEfGGI4kPZOhKinrAJrSs3ejIhmODqEkMHEisIv_uO3cpIZYmkI1GKzhG_eUmg2pmJFyByUfJYpshKtVr/s1600/Daddy+do.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjw_qVUz_u9IIW8Rwtahkn3_vgw3AddYksD5FwJI2znopngkuilmHB2zoFjyj7lEfGGI4kPZOhKinrAJrSs3ejIhmODqEkMHEisIv_uO3cpIZYmkI1GKzhG_eUmg2pmJFyByUfJYpshKtVr/s320/Daddy+do.jpg" width="240" /></a>hope to update more often now. hope.Anonymoushttp://www.blogger.com/profile/10568942960597955121noreply@blogger.com1tag:blogger.com,1999:blog-3180522938315820606.post-88381278766432659802012-04-25T16:34:00.000-05:002012-04-25T16:34:53.949-05:00The 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.<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhx4sEWhbp-QlOtYgsBM7LZ2xOgO_YxmTrEW_aVIhZ9qrSP_0lkwRXwQGOi4ObCQNRQEh8jwWI5_lXVyKr87jxwu5RtZrP3DZFnfWYtRbdOfxA0o3ye6DKV9FQXfyrTOn_hl8t0OEdm3FXi/s1600/DSC_0169.JPG" imageanchor="1" style="clear:left; float:left;margin-right:1em; margin-bottom:1em"><img border="0" height="213" width="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhx4sEWhbp-QlOtYgsBM7LZ2xOgO_YxmTrEW_aVIhZ9qrSP_0lkwRXwQGOi4ObCQNRQEh8jwWI5_lXVyKr87jxwu5RtZrP3DZFnfWYtRbdOfxA0o3ye6DKV9FQXfyrTOn_hl8t0OEdm3FXi/s320/DSC_0169.JPG" /></a></div>Anonymoushttp://www.blogger.com/profile/10568942960597955121noreply@blogger.com0tag:blogger.com,1999:blog-3180522938315820606.post-37189312948826016742012-03-27T17:05:00.000-05:002012-03-27T17:05:44.541-05:00Home Again!<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFSdFswWeZ6LEbq6HEsecqYMEEbP7ah7JwmNz7v-pUOXy-F8Szy44zndcsuxPrcinHCO-L6rp91hspMkZu9KqdsQmCKDbHcnT8r0rov4BxIlPSA55AGuKcLnn5RhW9P2iDR18hNk2V3d3s/s1600/DSC_0101.JPG" imageanchor="1" style="clear:left; float:left;margin-right:1em; margin-bottom:1em"><img border="0" height="213" width="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFSdFswWeZ6LEbq6HEsecqYMEEbP7ah7JwmNz7v-pUOXy-F8Szy44zndcsuxPrcinHCO-L6rp91hspMkZu9KqdsQmCKDbHcnT8r0rov4BxIlPSA55AGuKcLnn5RhW9P2iDR18hNk2V3d3s/s320/DSC_0101.JPG" /></a></div>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. <br />
<br />
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...<br />
<br />
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.<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-qZKODIrBra5evjmZmFk-2GAFFQOgZds4fpnpQohZNQiD4gQbSCcXJiFA4obl8H16EPJOXVO33-qDI7UjExfsW7y577vi2_OLZxgm03EWhafhz_CgDTCkG2_iafVDqRWjxGFdCJh6_a0Z/s1600/DSC_0112.JPG" imageanchor="1" style="clear:right; float:right; margin-left:1em; margin-bottom:1em"><img border="0" height="320" width="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-qZKODIrBra5evjmZmFk-2GAFFQOgZds4fpnpQohZNQiD4gQbSCcXJiFA4obl8H16EPJOXVO33-qDI7UjExfsW7y577vi2_OLZxgm03EWhafhz_CgDTCkG2_iafVDqRWjxGFdCJh6_a0Z/s320/DSC_0112.JPG" /></a></div><br />
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. <br />
<br />
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 :-(Anonymoushttp://www.blogger.com/profile/10568942960597955121noreply@blogger.com0tag:blogger.com,1999:blog-3180522938315820606.post-66022192805757000752012-03-09T09:10:00.000-06:002012-03-09T09:10:15.538-06:00Our trip back to children'sOn Wednesday of this week Memphis had an interesting doctor visit. Over the past couple of weeks his saturation monitor stat has been low, meaning that his blood oxygen saturation is low. We have only been hooking him up to the monitor at night, but his normal rate of 98 to 100 had been replaced by a normal of 90 to 93. 90 is typically as low as they want them to go. On Monday night, Memphis had a regular reflux during the night, but it took him extra long to recover from it. Rather than it being a 30 second ordeal, it turned into a 10 minute struggle for him to recover his breath and calm down. During this fight, his voice and cry seemed to change. It went from his normal cute little cry, to a very hoarse cry. After another day of hoarseness, we decided to take him in to see the doctor.<br />
<br />
Previously, at our prior doctors appointment, I had mentioned to the doctor that our saturation monitor had been going off alot during the night while he slept (reaching numbers below 90) pretty regularly. He seemed to just blow it off as equipment failure, since we technically aren't supposed to have the monitor anyway. But this de-sat that he was experiencing continued and continued to get worse. Reaching numbers below 80 at some times. We really felt that it was the monitor like the doctor said. In this appointment Memphis had a saturation of 100 percent on room air, which also confused the issue. This time on Wednesday when we took him to see the doctor, his saturation level was 87 percent. This concerned the doctor, as it should have. After the doctor consulted with the hospital, they both decided that he needed to be admitted.<br />
<br />
Memphis was placed on the fifth floor, in the respiratory distress area. Our doctor in Huntsville had told the doctors here that he felt that he had aspirated on some reflux, and now had aspiration pneumonia. Coming in the hospital, that's what everyone thought it was. Our nurse in the beginning after listening to him wasn't convinced. They put him on oxygen which immediately fixed his low saturation, and then they started planning the tests. They first gave him a chest X-ray, which resulted in an all clear for pneumonia. At this point the surgeon discontinued his feeding for the night, so that they could perform an upper gi on him in the morning. They placed him on fluids, and let us ride out the night. In the morning after the upper gi was completed, at around ten, they informed us that his fundoplication was still integrous. This was great news, being that if it wasn't still wrapped then they would have to do surgery to fix it. So now we are at the point that there isn't anything specific that is causing his desaturations, they called in pulmonary. The pulmonary doctor came to see us and after a few minutes of talking he left to go discuss it with his supervisor. I spoke to him about the risks of us being in the hospital with Memphis(flu, RSV, and the list goes on), especially with us being here right along with the other children that are suffering from these illnesses, with which he completely agreed. After a while his supervisor came in and said pretty much the same thing I said. He said that he needs to go home on oxygen, but he definitely needs to go home. He stated that a child looking as good as he does doesnt need to be in the hospital where he can get really sick. He said that with his chronic lung disease, any little thing can push him to where he needs oxygen. <br />
<br />
So now we wait. Everyone has said that we need to go home; pulmonary and surgery. They have started his feed back up, placed him on a new medicine for reflux. He has one more test that shouldn't take more than a few minutes. Now if we could just get the doctors on the ball to get us out of here it would be great.<br />
<br />
On a side note, everyone has commented on how big he is, and how good he looks. He is almost at the fiftieth percentile on the growth curve. Dr. Anderson stated that most all CDH babies don't even place on the curve in the beginning. Hopefully this just shows how strong he is. He is a little fighter, but this time he needed a little help. We are so grateful that this help is available to him.Anonymoushttp://www.blogger.com/profile/10568942960597955121noreply@blogger.com0tag:blogger.com,1999:blog-3180522938315820606.post-69017069418088846872012-02-22T15:28:00.001-06:002012-02-22T15:49:10.253-06:00<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPHOdy2gVr_OGjPSTg4r3hD-3QkuatAHbM0lu_p7FhaeZ8Jy7nNnFebK5YTDddaZehu0vEJQuZA2q_uYQs4_PhF1Xa00rqh4QJ0a-apJ8LzpcLceyTQp_zzqaa4FZ-6HR982peBMPrghxN/s1600/Feb+21-12-0070.JPG" imageanchor="1" style=""><img border="0" height="213" width="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPHOdy2gVr_OGjPSTg4r3hD-3QkuatAHbM0lu_p7FhaeZ8Jy7nNnFebK5YTDddaZehu0vEJQuZA2q_uYQs4_PhF1Xa00rqh4QJ0a-apJ8LzpcLceyTQp_zzqaa4FZ-6HR982peBMPrghxN/s320/Feb+21-12-0070.JPG" /></a></div>In this picture, you may notice the one sock look. Why does this poor child only have on one sock? Well, mom puts on two socks every morning and Memphis immediately pulls off one sock. There is no preference to which foot is sock-less just as long as one is. He says that's how he rolls ;-). Silly little man. <br />
<br />
Good News today, Memphis' helmet is working! The Orthopedic Dr. said that the 15 millimeter difference between his left and right sides of his head is now a 12 millimeter difference. This is still a severe malformation, but a step in the right direction. Mom told him that if he stopped taking his helmet off during nap time and sleep time the results would have been greater :-). He has decided that wearing his helmet about 10hrs a day instead of 23hrs is much better. <br />
<br />
Memphis is getting great props for all of his hard work from his OT therapist. Mom and Dad can't see that much progress has been made but we see him everyday. The therapist who sees him once a week said that she noticed a big difference from this week and last week. She said "I honestly didn't expect him to have come so far so quick". He is still not eating but IS now accepting toys, spoons, and other various objects to his mouth. He is even accepting a little bit of rice cereal. This is a big feat. <br />
<br />
Ohhh tummy time, what are we to do about that?????? Still working on this will little success. Memphis is also working hard to learn how to sit up on his own and roll over.<br />
<br />
Is reflux still a problem?? YES everyday multiple times a day. Poor little guy. His doctor has said "we are out of bullets" meaning they have no other medicines to give to try and fix/help the reflux. They are now sending him to a GI doctor. Memphis will see that doctor in March. Maybe they can figure out something?<br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipOn6CuCy1HLAMz4r7T8iXUi5fxUkTx0C9ufTp98kvvHkyO84xNIcNd3RjrQmbOEqH7RlhyIVZ8WOTCNiIXre8oIb7MhcfriukbNx7aHph7H54zMduTiZXF79Tt_BkmDn86L-hUQ03P9Dx/s1600/DSC_0075.JPG" imageanchor="1" style=""><img border="0" height="213" width="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipOn6CuCy1HLAMz4r7T8iXUi5fxUkTx0C9ufTp98kvvHkyO84xNIcNd3RjrQmbOEqH7RlhyIVZ8WOTCNiIXre8oIb7MhcfriukbNx7aHph7H54zMduTiZXF79Tt_BkmDn86L-hUQ03P9Dx/s320/DSC_0075.JPG" /></a></div>Anonymoushttp://www.blogger.com/profile/10568942960597955121noreply@blogger.com2tag:blogger.com,1999:blog-3180522938315820606.post-20278323042375228272012-02-13T19:26:00.001-06:002012-02-13T19:29:07.795-06:006 Months Old on the 19thIt's been a while since the last post, we are sorry that we have not been keeping up with the blog like we should. Wow running after three kids will keep you busy!<br />
<br />
Everybody is doing great! the kids are giving mom and dad a run for their money and all is finally as it should be in the Tipton home.<br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpE4HQsO1HgVs0BYXc1sS5d3r1iFgkCXF9YbuPUw1HOku51IcCHQ3UuaPLuDJBDe6Sb7bf2C4jgDlqv0amM00OuynedDtlBGer_qgiaCo3JT6FCkZPXffDIn-S9LxkypMdP009tS0KkodG/s1600/Feb+13-12.JPG" imageanchor="1" style="clear:left; float:left;margin-right:1em; margin-bottom:1em"><img border="0" height="213" width="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpE4HQsO1HgVs0BYXc1sS5d3r1iFgkCXF9YbuPUw1HOku51IcCHQ3UuaPLuDJBDe6Sb7bf2C4jgDlqv0amM00OuynedDtlBGer_qgiaCo3JT6FCkZPXffDIn-S9LxkypMdP009tS0KkodG/s320/Feb+13-12.JPG" /></a></div><br />
Memphis sees his Physical Therapist once a month and has seen her twice now. She is very impressed with his improvement. According to her first "physical" assessment a month ago, Memphis was in the 10th percentile of his peers. This means he was on the charts; just below average -- which was to be expected given everything he has been through. Each month the PT comes out to work with Memphis and teach mom and dad different methods to help Memphis progress in things such as rolling over, tummy time, sitting up, putting pressure in feet, etc...<br />
Memphis is now putting his feet to his mouth, rolling over to his side, and using his feet to push himself around the floor. Yay little Man! <br />
<br />
Memphis see his Occupational Therapist every week. The OT works on everything oral that Memphis needs to be doing. Memphis still has absolutely no interest in sucking or having anything put in his mouth for that matter. He is still getting all nutrition from the g-tube. Mom and Dad are of course learning all we can from the OT and practicing with Memphis daily. We started trying taste with rice cereal and baby food this week hoping he would like this since there isn't any sucking involved. Memphis of course continued to resist any foreign object coming near his mouth. He also said Bananas are the worst tasting things ever!<br />
<br />
Memphis is still doing great with no oxygen. He has a bit of a cold right now along with everybody else in the household :-(. So, mom and dad are dragging as we try to fight colds and chase kids. The kids of course are still crazy and on full throttle but now with snotty noses :-).<br />
<br />
We still worry every day about our little man and what his future holds but we are doing all we can and taking one day at a time.<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzrkHKJ7xcqPOh4uoza_syGbo6TxXnkJB8HX2D0WVsZj7MpBVF3Jvl2vWK5XhdaNESHhsvjNbAqqwl8k803SC-jGH5zn2J1GbgVaI7y5edbZdIFu9Kuk0EaQX6AAebaKldk4xo_zEgf1lm/s1600/Feb+12-12+Braden+and+Memphis.JPG" imageanchor="1" style=""><img border="0" height="213" width="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzrkHKJ7xcqPOh4uoza_syGbo6TxXnkJB8HX2D0WVsZj7MpBVF3Jvl2vWK5XhdaNESHhsvjNbAqqwl8k803SC-jGH5zn2J1GbgVaI7y5edbZdIFu9Kuk0EaQX6AAebaKldk4xo_zEgf1lm/s320/Feb+12-12+Braden+and+Memphis.JPG" /></a></div>Anonymoushttp://www.blogger.com/profile/10568942960597955121noreply@blogger.com0tag:blogger.com,1999:blog-3180522938315820606.post-80433675411079534032012-01-24T15:22:00.002-06:002012-01-24T17:45:03.944-06:00NO OXYGEN!!!As of Friday December 20th, the Pulmonary Dr. ceased the use of supplementary oxygen. Memphis has been breathing "room air" for five days and thoroughly enjoying it! It is Amazing! We were told at the hospital that he would probably be on oxygen for 6months to a year. He just turned 5 months on the 19th and the very next day came off oxygen completely. What a wonderful birthday present. He has been super smiley every since the nose cannula came out. We have been told that the company that supplies the Oxygen and its accessories will be coming to pick up everything soon. This of course means the saturation monitor will go also, mom has become quite used to having this and isn't thrilled that it will be leaving. The reasoning behind this is Memphis is still having a lot of reflux and if he were to reflux in the middle of the night and choke we will no longer have a monitor to beep very loud to tell us he isn't breathing. <br />
Here he is watching his movie..<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1LmG76v3t7iALQHbuDfCMXUl1vYhF7GN4CiHCDGY5fOxL5nlYnw9_k33Dzo6CqV6Q7dCRcn5R4VXlNnqBT3DZDufJwfogIVmSnqU8yNKLq63W9gsd82eZ95826Qd2hjFChMbMyAyrKe7A/s1600/Jan+24-12.JPG" imageanchor="1" style=""><img border="0" height="213" width="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1LmG76v3t7iALQHbuDfCMXUl1vYhF7GN4CiHCDGY5fOxL5nlYnw9_k33Dzo6CqV6Q7dCRcn5R4VXlNnqBT3DZDufJwfogIVmSnqU8yNKLq63W9gsd82eZ95826Qd2hjFChMbMyAyrKe7A/s320/Jan+24-12.JPG" /></a></div><br />
Memphis has his helmet now and of course doesn't like it one bit. We are taking this week to slowly increase the amount of hours spent wearing it until eventually we get to 23hrs a day. Today he will wear it twice for four hours each time. Tomorrow he will wear it for six hours. <br />
<br />
Memphis went to his follow up appointment to see the surgeon which went well. The surgeon was impressed with how much weight he has gained since leaving the hospital. He was also impressed with how squirmy and wiggly he was. Memphis wasn't moving around much in the hospital but then again he was stuck in a bed all the time -- where was he too wiggle to? All of his battle wounds looked great and healed perfectly. We brought up our concerns about the continuing reflux and Memphis was given yet another medicine. This medicine is supposed to work by helping things to move through him better thus helping the reflux. We have not yet given this medicine, we will give it this afternoon. We were told to try it for a few weeks and see what happens.<br />
<br />
Memphis will see the OT therapist at home for the first time on January 31st. She will work with Memphis on sucking/eating from a bottle mainly as well as a few other things.Anonymoushttp://www.blogger.com/profile/10568942960597955121noreply@blogger.com1tag:blogger.com,1999:blog-3180522938315820606.post-68991911719872794612012-01-13T10:35:00.001-06:002012-01-13T15:07:18.823-06:00An Update<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMzsb9_7S0M1_yjmap1Z-DOaIIFuSdN44_z2Tqq0CYE1QfuPzyZGQuLyZvkZKDQNDN3ADqrCrJZEL90wKE1DMl213c8ITw3lG1PRJBW2uHYe6N-J_Ry2jC5inUJTiZ74gjmzTceSKwSZdN/s1600/Jan+12-12.JPG" imageanchor="1" style=""><img border="0" height="320" width="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMzsb9_7S0M1_yjmap1Z-DOaIIFuSdN44_z2Tqq0CYE1QfuPzyZGQuLyZvkZKDQNDN3ADqrCrJZEL90wKE1DMl213c8ITw3lG1PRJBW2uHYe6N-J_Ry2jC5inUJTiZ74gjmzTceSKwSZdN/s320/Jan+12-12.JPG" /></a></div>Memphis was seen by Early Intervention yesterday, they came to asses him and see if he did in fact need their services. Infants and toddlers from birth through age 2 are eligible to receive appropriate services if they are delayed by 25 percent or more in their cognitive, physical, communicative, social, emotional or adaptive development, or if they have a diagnosis of a physical and/or medical condition that will likely result in developmental delay. We were told that even without adding up the scores, Memphis will definitely be eligible for this service. He qualifies for many reasons, but the two big reasons are feeding issues and developmental delay. Early Intervention staff will come to our house to work with Memphis as well as train mom and dad in what they need to know to help Memphis achieve his maximum potential.<br />
<br />
Memphis saw his kidney doctor this past Tuesday and he still has high blood pressure -- his systolic was 112 and they would like it to be between 80 and 105. So, the doctor upped his blood pressure medicine dose. This was to be expected because as he grows in weight he will out grow his medicine and it no longer is therapeutic. The doctor said this is completely normal and he would have been surprised if Memphis would have been able to get off his medicine. The doctor also said that around 18months of age is when children with kidney trauma tend to out grow the need for blood pressure medicine. It just takes some time for the Kidney's to heal.<br />
<br />
Still having some reflux issues, and still actively trying to figure out how to fix it. Mom and Dad think that it may be drainage that he doesn't fully swallow down - that he then gets chocked on and tries to bring up? Maybe it is just as simple as he is now healthier and moving around a lot which gets everything moving and it causes him to re-flux? If that is the case, there is no fix and he just has to out grow it. Poor baby we wish we could make it go away :-( <div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjod3npFAWO9dvGgqUluqdMcSgtteDvt65hvmxf_QXxE9SB5cZjth0LPyi9VKGfGU_2dQBCuLfDvS6gkh0F1dlF63WmseZSZe8Q73BpW-Wr3AOPYiQuDG0uYmixq7pQJwSxFZTGQ7VgfXXA/s1600/Jan+12-12+a.JPG" imageanchor="1" style=""><img border="0" height="213" width="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjod3npFAWO9dvGgqUluqdMcSgtteDvt65hvmxf_QXxE9SB5cZjth0LPyi9VKGfGU_2dQBCuLfDvS6gkh0F1dlF63WmseZSZe8Q73BpW-Wr3AOPYiQuDG0uYmixq7pQJwSxFZTGQ7VgfXXA/s320/Jan+12-12+a.JPG" /></a></div><br />
Memphis will be getting his Helmet on the 20th of January. Hopefully if it does its job, it will correct his deformity by 80%. <br />
<br />
Memphis will also be seeing his Pulmonary Doctor and Surgeon on the 23rd of January. We will keep everyone updated as those appointments come. We are hoping to get rid of the apnea monitor! <br />
<br />
Thanks for Keeping up with our Little Man it means so muchAnonymoushttp://www.blogger.com/profile/10568942960597955121noreply@blogger.com1