Peyton Nicole Smith
Wednesday, May 25, 2011
Wednesday, May 25th, 2011
Peyton Nicole Smith
Monday, May 23rd, 2011
Tonight was supposed to be Michelle's last night being Peyton's nurse. Because Peyton is far enough out from her surgery and not "sick" enough on a regular basis according to current Medicaid guidelines, the only nursing she qualifies for is respite hours every quarter (about 50 hours a month). Although we knew we would stay in touch (she might even be Peyton's nurse next year for preschool) it was still a sad day knowing we wouldn't be seeing her four nights a week. We have had our share of bad nurses but have only had a few really good nurses. Michelle was all the things we had been looking for - she's dependable, she's knowledgable, she stays awake on shift, she loves Peyton and Peyton absolutely adores her.
But surprise! Apparently there were still 144 hours that hadn't been used so we have a reprieve - we will continue to see her smiling face 4 nights a week through 6/23. Yeah!
Sunday, May 22, 2011
Friday, May 20th, 2011
I wasn't quite so sure about going but Scott came out to greet me and led me back to their office to start "playing". Although a communication device will be a wonderful tool to assist me in being understood because my spoken language is not always understandable, as far as I was concerned this really was more like playing. Because of my limited hand strength and how tiny I am, there aren't a lot of options that I can carry and manipulate. First off I tried the iTouch, because it was basically just like Mommy's iPhone I had no trouble figuring out how to work it. The iTouch was loaded with the most popular communication app - ProLoQuo2Go. Once I got the hang of the right pressure to use it was no problem to push buttons and hear a girl's voice speak what I had pushed. The iTouch was small and had a cool carrying case that acted as a much louder speaker. The only problem was that because the iTouch was so small it was a little harder to make sure I was hitting the correct image all the time. Scott then pulled out the iPad (first photo above) with the same app loaded. Although it was definately heavier (espesically with a heavy duty case to prevent breakage) it was much easier for my little fingers to make sure I was touching the correct buttons.
After playing with that for a while, we moved on to a more standard communication device the Vantage Lite (second photo above). In some ways it was a little more difficult to navigate because of some assumptions it makes. For example if I wanted to type out "don't like peas" I would push on an image of a knot to get to the no/don't/not type of words. Since Knot and Not sound the same but have different meanings it is a little lost on a 3 year old as to why I would push the button with the picture of a rope with a knot in it. Over time, I would obviously learn to memorize that but it is not real intuitive to someone my age. But it was colorful and lighter than the iPad so it was certainly an option.
Finally, I got to play with a little three ring binder with several hundred tiny images made by BoardMaker. It was definately not high tech but would be a perfect non techie communication method to put in my diaper bag/medical bag to point out what I am trying to say in the case that I don't have a communication device/can't get to my communication device, etc. Mommy is for sure going to go back to UAAACT after purchasing the binder from BoardMaker and then use their software to make me one.
So what is the cost for something like this? Well Mommy compared the iPad with the app and the case to Vantage Lite since they were most compareable and you can see the numbers below:
iPad 2 - $499 + Proloquo2go - $189 + iAdaptor (case/speaker) - $198 = $886
Vantage Lite - $7495
So comparing the two it seems like a no brainer - right? Vantage Lite is almost 10 times the cost of the iPad so for similar technology why wouldn't we go with the iPad? Well here's the kicker. Although insurance companies will generally pay for something like the Vantage Lite it is pretty rare that they will pay for the iPad. Because the iPad is not a dedicated communication device (read you can play games, play on the internet, etc) it is more likely an insurance company will spend 10 times the price for a Vantage Lite because that is all it can be used for - communication. Scott already warned Mommy that Medicaid won't pay for it but there is a shot that one of my two commercial plans may. If not, Mommy is completely prepared to appeal it based on the cost issue alone. After all should there be a new app developed in the next few years that blows ProLoQuo2Go out of the water, it would just be an additional $200 or so to get a new app vs. replacing a $7500 communication device when the technology improves.
Peyton Nicole Smith
Wednesday, May 18th, 2011
A short time later, Dr O'Gorman came in just as I was taking a few photos with Mommy's iPhone. I snapped af ew of her as well and as Mommy and the doctor tried to catch up, Grandma Glenda tried to keep me quiet. I hadn't had my nap and was raring to go! It's a little ironic that just a year ago Mommy was trying to encourage me to talk and now she spends just as much time shushing me!
First off, Mommy let the doctor know that with strict feeding times I can keep my button from sucking in. However, surgeries are a problem because as soon as the Pedialyte is stopped all bets are off. Dr O'Gormon confirmed with Mommy that we had done an xray of my belly and a bigger size button and nothing had helped. At this point with my jaw distraction behind me, she wants to send me on to Dr Downey - a pediatric surgeon - for a consult to discuss moving the button to where it probably should be. Mommy knows there is no guarantees with surgery, but she did ask, "What are the chances moving the button will prevent the issues Peyton has been having." The doctor said I am the only child she has ever seen with that placement and also the only child who has ever had the sucking in problem. Since she has seen a lot of children she has every reason to believe that is what is causing the problem and that moving it will solve it. Luckily, the surgery is pretty minor and would probably be outpatient or a 24 hour observation at the most. You can see in the photos above the top one is my button - just right of midline. The next photo down is the placement most kids have - left of midline. Apparently a few inches can make a big difference!
Mommy and the doctor talked a little about oral eating. Since I have been focusing more on speech because of preschool and less on the eating aspect, Mommy wasn't sure if there was a "window of opportunity" for a child to go from a tube feeder to an oral feeder. Dr O'Gorman said it really doesn't work like that and just because I don't get a tube out in the next few years doesn't mean I won't ever get it out. She also agreed with Mommy that although intensive feeding programs could benefit some children, I was probably not a good candidate because me eating issues are less behavioral in nature and more structural.
Before the end of the appointment Mommy shared with the doctor the troubling signs of potential reflux Courtney had seen a few weeks ago and Dr O'Gorman suggested that at the time the tube was moved they would do a scope and a Ph probe and if I was demonstrating reflux they would also do the Nissen procedure to prevent further reflux. In addition, they could coordinate with the ENT folks to have their scope of my airway done at the same time to see if there were any other issues (like granulation tissue) to be aware of for possible decannulation in the future.
Mommy is certainly not jumping for joy at the thought of another surgery but my tube placement has long been a source of confusion and frustration and getting it moved now before it potentially causes more issues might not be a bad idea.
Peyton Nicole Smith
Wednesday, May 18, 2011
Sunday, May 15th, 2011
Peyton Nicole Smith
Tuesday, May 17, 2011
Wednesday, May 11th, 2011
Mommy really needs to start bringing the camera to my therapy appointments so you have something to look at! So today was my first OT appointment for the first time since before my jaw distraction. Wendee had already got an update on how I was doing from Courtney (speech therapist) since they are in the same office. I was a little disappointed it wasn't Courtney I was seeing but Wendee is a bunch of fun too so I got over that quickly.
During my "off" time, Mommy had finally gotten me in to have an xray done of my shoulder that Wendee had previously requested. Although Wendee wasn't able to view the actual image today, she read the radiology report and it confirmed what we had all been thinking. My shoulder joint is not "normal". The radiology report indicated the joint did not have full movement (it was impeded by too little space in the joint) and it lacked plasticity. So basically what that means is that the range of motion I have now is essentially what I will always have no matter how much therapy I do. Although therapy will not buy me any more range of motion, it will help to build up my strength in other areas and keep me as flexible as possible so it is certainly not a waste of time.
After reviewing the report, Wendee asked Mommy about my goals. She said that one area that people keep being concerned about is my balance and how often I fall. Mommy doesn't think I actually fall much more often than other kids but I don't stop my falls well and end up with lots of scraped noses and goose eggs on my forehead. Mommy has heard many theories on why that is happening - my ankles are weak, the abnormal placement of my ear canals is affecting my balance, nerve endings in my feet aren't firing correctly due to having a syndrome, my arms aren't long enough to protect my face when I do fall, etc. So Wendee took all that information and set out to do a few tests to see if she could figure it out.
The first test was to put me on my tummy on a big exercise ball. She was behind me holding on to my waist and without telling me when - she would shoot me forward to see if I would put my arms out in front of me when I rolled forward to protect myself. I thought it was a ton of fun and initially almost rolled completely around before Wendee explained I was supposed to try to stop from rolling by putting out my hands. Once I got the hang of it, then I would do just as expected and put my hands out to stop me. However, Wendee quickly discovered that although my arms were out because they were so short my head was already going to hit before they would do any good. So theory four proved to be true to some extent.
The second test was to have me sit on the ball facing Wendee. Again she would hold on to my waist and then quickly roll the ball to one side or another to see at what point my arms would come out to the side to stop me. Time after time I would literally be ready to fall off the ball before my arms would come out. Wendee thought I was just playing around and trusting her to catch me but eventually she discovered that it wasn't that at all - I was putting my arms out but by the time my reaction would kick in I was too far gone and there would have been no hope to right myself before falling. Wendee concluded that most likely due to the abnormal location of my inner ear my balance was off. So theory two was proving to be true to some extent as well.
The third test was to have me walk and run with my shoes and socks off to see what my feet were doing. In the beginning I was dancing and skipping because I knew I was being watched. So Mommy tried to take my mind off what I was doing to see how I really walked by asking me to go pick a few things up for her and bring them back to her. Wendee was intrigued by what she saw and marched me down the hall to have a PT look at my gait as well. Sure enough, I was rolling (pronation) my ankles to the side at times when I walked - espescially on the left side. So there was some truth to theory one as well.
My family has already noticed that I fall more when I have thick soled shoes versus when I am barefoot - which is probably because I don't get the "feedback" from the soles of my feet the more there is between them and the ground. Although there isn't a good test for this it certainly lends some credence to theory three as well.
So let's see - four theories and most likely each theory is contributing to some extent to my balance issues. So now what?
Ankles - orthotics to help provide support to my ankles
Ear canals - nothing we can do about this
Nerve endings - thin soled shoes, however this creates a problem because even with thin soled shoes, most orthotics for the ankles also cover the bottom of the foot which would mean less feedback for the nerve endings. This could be challenging!
Short arms - since we can't make my arms longer the only thing we can work on is making the muscles in my arms stronger to try to compensate. Wendee suggested having me be a "wheelbarrow" (you know that wheelbarrow races you did as a kid) and "crab walking"
So after thinking through all this I think it is pretty spectacular that I am walking at all - let alone at 16 months which was considered within the "normal" range!
Peyton Nicole Smith
During my "off" time, Mommy had finally gotten me in to have an xray done of my shoulder that Wendee had previously requested. Although Wendee wasn't able to view the actual image today, she read the radiology report and it confirmed what we had all been thinking. My shoulder joint is not "normal". The radiology report indicated the joint did not have full movement (it was impeded by too little space in the joint) and it lacked plasticity. So basically what that means is that the range of motion I have now is essentially what I will always have no matter how much therapy I do. Although therapy will not buy me any more range of motion, it will help to build up my strength in other areas and keep me as flexible as possible so it is certainly not a waste of time.
After reviewing the report, Wendee asked Mommy about my goals. She said that one area that people keep being concerned about is my balance and how often I fall. Mommy doesn't think I actually fall much more often than other kids but I don't stop my falls well and end up with lots of scraped noses and goose eggs on my forehead. Mommy has heard many theories on why that is happening - my ankles are weak, the abnormal placement of my ear canals is affecting my balance, nerve endings in my feet aren't firing correctly due to having a syndrome, my arms aren't long enough to protect my face when I do fall, etc. So Wendee took all that information and set out to do a few tests to see if she could figure it out.
The first test was to put me on my tummy on a big exercise ball. She was behind me holding on to my waist and without telling me when - she would shoot me forward to see if I would put my arms out in front of me when I rolled forward to protect myself. I thought it was a ton of fun and initially almost rolled completely around before Wendee explained I was supposed to try to stop from rolling by putting out my hands. Once I got the hang of it, then I would do just as expected and put my hands out to stop me. However, Wendee quickly discovered that although my arms were out because they were so short my head was already going to hit before they would do any good. So theory four proved to be true to some extent.
The second test was to have me sit on the ball facing Wendee. Again she would hold on to my waist and then quickly roll the ball to one side or another to see at what point my arms would come out to the side to stop me. Time after time I would literally be ready to fall off the ball before my arms would come out. Wendee thought I was just playing around and trusting her to catch me but eventually she discovered that it wasn't that at all - I was putting my arms out but by the time my reaction would kick in I was too far gone and there would have been no hope to right myself before falling. Wendee concluded that most likely due to the abnormal location of my inner ear my balance was off. So theory two was proving to be true to some extent as well.
The third test was to have me walk and run with my shoes and socks off to see what my feet were doing. In the beginning I was dancing and skipping because I knew I was being watched. So Mommy tried to take my mind off what I was doing to see how I really walked by asking me to go pick a few things up for her and bring them back to her. Wendee was intrigued by what she saw and marched me down the hall to have a PT look at my gait as well. Sure enough, I was rolling (pronation) my ankles to the side at times when I walked - espescially on the left side. So there was some truth to theory one as well.
My family has already noticed that I fall more when I have thick soled shoes versus when I am barefoot - which is probably because I don't get the "feedback" from the soles of my feet the more there is between them and the ground. Although there isn't a good test for this it certainly lends some credence to theory three as well.
So let's see - four theories and most likely each theory is contributing to some extent to my balance issues. So now what?
Ankles - orthotics to help provide support to my ankles
Ear canals - nothing we can do about this
Nerve endings - thin soled shoes, however this creates a problem because even with thin soled shoes, most orthotics for the ankles also cover the bottom of the foot which would mean less feedback for the nerve endings. This could be challenging!
Short arms - since we can't make my arms longer the only thing we can work on is making the muscles in my arms stronger to try to compensate. Wendee suggested having me be a "wheelbarrow" (you know that wheelbarrow races you did as a kid) and "crab walking"
So after thinking through all this I think it is pretty spectacular that I am walking at all - let alone at 16 months which was considered within the "normal" range!
Peyton Nicole Smith
Tuesday, May 10th, 2011
Peyton Nicole Smith
Friday, May 13, 2011
Monday, May 9th, 2011
An unfortunate byproduct of the surgery seems to be that I now have loads of saliva pooling in my mouth on my teeth which is not helping the disaster that is my dental health. The dentist suggested again that my intake should be limited to water and milk. When Mommy explained I was allergic to dairy and was using soy milk he explained that has a lot of sugar too so that pretty much just leaves water. But realistically, he knows that trying to get me to have anything oral is a challenge so it is a balancing act. So for now, soda is off limits - at least most of the time. Mommy figures that having it every now and again when we go out to eat is okay but otherwise water is my new drink of choice (okay maybe not my choice).
In the evening, Mommy sat me down to explain again that the dentist said that soda was bad for my teeth and that is why I had to start drinking water instead. When I asked for soda Mommy said "no" and I had a 30 minute freak out than went back to watching my show. I asked again a few minutes later and once again Mommy said no. I looked a little deflated I am sure but I was caving. It didn't take just a few more minutes before I finally asked for water. By a stroke of luck Sid the Science Kid had an episode on about teeth. After watching how a little girl lost all of her teeth because she didn't brush and had too much sugar (seriously it was terrifying even being a cartoon girl) I was on board. In fact I told Mommy later that night, "I like water"! Mommy doesn't doubt there will be more fights on this in the future but we made some head way today.
Peyton Nicole Smith
Sunday, May 8th, 2011
With Peyton now in preschool, so begins the tradition of school-made Mother's Day gifts. Although we have beautiful castings of Peyton's hands prior to each of her surgeries that Travis spent hours getting just right - this simple hand print is enough to get me all weepy. It will take it's place in the memory box I am keeping, nestled amongst her many hospital ID bracelets, the first trach we ever changed, her jaw distractors and the more traditional baby book. And looking at it I will forever be reminded that despite how her hand print may not be "normal" what it will represent is how very "normal" she is - putting her hand to clay as countless children have done before her and countless more no doubt will do in the future.
Saturday, May 7th, 2011
This won't be the last time it happens and it certainly wasn't the first time but each time it does my heart gets bruised just a little more. With some decent weather Peyton and I took the opportunity to go the local park. There were a handful of children around us but one little girl - probably around 7 - was obviously staring at Peyton. Every where Peyton would go, the little girl would follow and just blatantly stare. Feeling a little uncomfortable, I decided to head away from the slides to an area off on it's own with a ride on toy. Sure enough, the little girl followed and stood right in front of Peyton, her eyes huge and mouth hanging open. For now, Peyton is still completely unaware of the lack of social graces the girl was showing but I was starting to get a little irritated. In an attempt to help the situation, I asked the girl very nicely "do you have some questions because if you do that would be okay". But she became embarrased and walked away. When we went to play on the slides later she was still hanging around, this time bringing a friend with her to join in the fun but kept a little more distance. Although Peyton didn't care I was tired of feeling ill at ease when I was supposed to be enjoying myself with Peyton so she and I went off to a grassy area to play soccer away from all the stares. We went back to the slides after that family left and came across another group of children who were more than willing to ask questions - much more my comfort zone!
Later I felt a little guilty that I was being unfair to Peyton and essentially punishing her by taking her away from the slides so I wouldn't have to feel uncomfortable. Although there is plenty of literature on how to care for a trach and we had lots of training before ever leaving the hospital with Peyton - there isn't any program in place to prepare us for these type of situations. I can only hope that Peyton is more adept at this as she gets older because I am certainly not an expert!
Thursday, May 5th, 2011
With two intense doctor's appointments back to back you would think when Mommy announced it was time to go to Speech Therapy today I would go running for the hills. But Courtney is my therapist and I adore her and it has been almost 4 months since I last saw her so I didn't mind one bit. Courtney has followed me on my blog so she had some inkling of how I would look post-distraction. Mommy gave her a few additional updates and then we got to work.
Prior to the distraction Courtney had told Mommy that we would start focusing more heavily on my mouth placement when I speak after the distraction. So today she ran through the basic sounds and helped me remember where to put my tongue for sounds like "d" and "t". Although my "princess spot" for my tongue placement has always been behind my front tooth - now my tongue works a lot differently then it did before so it's time to start training it to do it right now.
Courtney explained that she has worked with the surgeons at Primary Children's and before I would undergo a palate surgery I would first have to pass a test to show that even before the surgery my mouth placement for making the sounds is correct. The reasoning is that if I can't succeed with making the correct placement before the surgery than the outcomes won't be as good and it could end up being an unnecessary surgery. So we have a few months to make sure my placement is correct ahead of getting tested.
Because of my distraction, Courtney was finally able to get a good look in my mouth. She saw what she calls "cobbling" (also referred to as pharyngeal cobblestoning) which can indicate some type of irritation - very possibly reflux. Now Mommy has wanted a bronchoscopy to check out my airway for a long time but since we haven't really been any where close to a potential decannulation it hasn't been necessary. With the cobbling and the very real possibility of reflux Mommy plans on discussing with the craniofacial panel in July about getting one scheduled soon to figure out what is really going on.
Peyton Nicole Smith
Prior to the distraction Courtney had told Mommy that we would start focusing more heavily on my mouth placement when I speak after the distraction. So today she ran through the basic sounds and helped me remember where to put my tongue for sounds like "d" and "t". Although my "princess spot" for my tongue placement has always been behind my front tooth - now my tongue works a lot differently then it did before so it's time to start training it to do it right now.
Courtney explained that she has worked with the surgeons at Primary Children's and before I would undergo a palate surgery I would first have to pass a test to show that even before the surgery my mouth placement for making the sounds is correct. The reasoning is that if I can't succeed with making the correct placement before the surgery than the outcomes won't be as good and it could end up being an unnecessary surgery. So we have a few months to make sure my placement is correct ahead of getting tested.
Because of my distraction, Courtney was finally able to get a good look in my mouth. She saw what she calls "cobbling" (also referred to as pharyngeal cobblestoning) which can indicate some type of irritation - very possibly reflux. Now Mommy has wanted a bronchoscopy to check out my airway for a long time but since we haven't really been any where close to a potential decannulation it hasn't been necessary. With the cobbling and the very real possibility of reflux Mommy plans on discussing with the craniofacial panel in July about getting one scheduled soon to figure out what is really going on.
Peyton Nicole Smith
Wednesday, May 4, 2011
Wednesday, May 4th, 2011
I'm no dummy, as soon as we started walking into the exam room I got upset. Mommy and Grandma had taken the chairs which left me with the exam table. I wasn't having any of that! I insisted Mommy sit on the table while I sit on the chair. Unfortunately, the doctor wasn't fooled!
While I watch Caillou on the iPhone for the second time in two days Mommy filled the doctor in on my allergy/asthma history explained that the Dysphagia Clinic wanted a work up since I had such a serious reaction to milk. The doctor started with a basic panel of testing - 5 different types of trees and bushes, 5 environmental (like pollen), 5 common food allergies and 5 common animals. Before he started the doctor let Mommy know that although blood tests were an option they weren't really as accurate as the skin testing. So the plan would be to do the skin testing if I would let him and use the blood testing as a back up plan. Now for those of you who aren't familiar with allergy testing, it involves just a miniscule prick of what is being tested on an area of the back. First my back had to be numbered and add two for a positive and negative control. Then the pricking began! (Now the doctor pricked Mommy once so she could feel it first and she couldn't even really tell). I thought it was kind of ticklish the first few pricks but about 10 pricks in I was crying and ready for it to be over. The nurse warned Mommy that it had to sit on my skin for 15 minutes and if I did have a reaction to anything I wasn't allowed to scratch it.
So while the minutes counted down I watch some more Caillou and picked out some items from the toy box. The doctor came back in and said that I had a serious reaction to milk (no surprise there) and a mild reaction to cats. Now Daddy has been trying to talk Mommy into getting me a cat since I like Grandma's so much so good thing she held her ground. Although the doctor didn't order Grandma to get rid of her cat, since I spend so much time there he recommended starting me on Zyrtec daily for the symptoms associated with an allergy - runny nose, sneezing, etc.
Dr Moffat told Mommy that in all likelihood I will outgrow my milk allergy in the next few year and by being tested every year we can see how quickly the reaction goes down and when I can start milk trials. However, most pet allergies tend to get worse with time. In addition the environmental allergies (pollen, grass, etc) don't usually start up until a person has gone through several seasons. Since I have only been in Utah a year if I am going to have seasonal allergies I probably won't start to have problems for several more years.
Since my last blood test for the milk allergy was a year ago, the doctor sent me down the hall to the lab to get another test done so he can see where the numbers are going. Now for anyone who knows me, a simple blood test is an oxymoron. Mommy let him know I was a hard stick and not to be disappointed if we didn't get any blood for him today. Down the hall we went and Mommy sat down with me in the chair. The girls were young but fully prepared! One held down my arm while the other looked for the vein. After a few seconds of cleaning and finding the vein in went the needle - one stick guys! It only took about a minute to fill the tube. I was mad as all get out and crying up a storm but it was over before I could get too worked up. Initially I was too angry to think about the offer of a sucker but quickly changed my tune. We walked down the hall and out the door and Mommy explained to the concerned folks in the waiting area that I was really okay and my feelings were more hurt than anything.
So now I have another specialist to add to my list of faithful followers and future appointments!
Peyton Nicole Smith
Tuesday, May 3rd, 2011
First up was the EKG which usually doesn't bother me too much because I think having all the "stickers" put on me is kind of fun. After that was done Dr Mack came in and hauled out a picture similar to the one above and discussed very thoroughly what was going on with my heart. First off - I have a bicuspid aortic valve. Aortic valves are normally tricuspid (with three leaflets) but in 1% of the population it is bicuspid at birth (congenital). Because of my abnormal valve the valve will not open fully (aortic stenosis) and will not close completely either (aortic insufficiency). These two processes often go hand in hand like they do for me. Because the valve does not open fully it blocks blood flow to the heart and because it will not close completely some of the blood leaks back in the wrong direction. My EKG looked great, though, and on listening Dr Mack heard just a slight murmor. He promised to come back to talk after my echocardiogram.
We had to wait quite a while so Mommy let me listen to Yo Gabba Gabba music on her iPhone and even went out to YouTube and let me watch Caillou videos. I was thrilled so when it was time to head to the echo room despite some inital nervousness once Mommy sat me on her lap on the exam table I watched the Caillou videos on her phone and the tech got right to work without a peep out of me. About 15 minutes later we were all done and back in the exam room. Dr Mack came in and went through a short intro into statistics and standard deviations (Mommy had a terrifying flashback to the statistics class she took in college which she never thought she would need again) and explained that a few of the measurements were in the 1.5-2.5 standard deviation range which was not bad but one particular measurement was at the 2.69 standard deviation which was still technically within normal limits but a little higher than he would like to see. Since Dr Mack doesn't have my previous echocardiogram he can't tell how high it was to begin with or how quickly it is changing. For now instead of coming in again in 2 years he wants me back in a year and he is going to try to get my echo results from my cardiologist at UC Davis as a comparison.
Some things Mommy learned today:
1. There are three periods of fast growth that place a strain on the heart - infancy, 18 months and puberty. I have already made it through 2 of them with little change so the next hurdle is puberty.
2. An aortic valve replacement is not the first choice if it were to get worse. I could be placed on blood thinners, have the valve opened by a balloon or even have the valve repaired by either shaving off the thickening around the valve or adding additional tissue to the leaflets themselves to prevents so much leakage. Doctors don't want to cut into the chest any more than necessary and depending on how early a valve is replaced it may need to be replaced multiple times over the course of someone's life.
3. My type of heart disease is not the kind that usually results in someone dropping dead one day like the athletes you hear about on the news. In their cases it is one of three things:
a. Thickening of the heart - since I am getting echo's regularly this is
something they are already monitoring
b. Irregular heart beat - I am not any more likely to have an irregular
heart beat than someone who doesn't have aortic valve disease.
c. Unusual electric pathways - just like the irregular heart beat I am
not any more likely to have this than anyone else
4. Mommy had previously been told that when I am having surgeries (dental extractions, distraction, etc) that I need antibiotics as a preventive measure because of my heart. When I had the hardware removed two weeks ago they had me take antibiotics for three days and when I had it put on I had doses for a week. Dr Mack said that is old school protocols and overkill. I only need one dose prior to the surgery - that's it. My tummy thanks him!
After all the stress of will I or won't I sit for the echo Mommy was so glad to have it over and done with. It was a great visit and Dr Mack and his staff took all the time I needed to get everything done.
Peyton Nicole Smith
Tuesday, May 3, 2011
Sunday, May 1st, 2011
Peyton Nicole Smith
Friday, April 29th, 2011
On my first day back I shocked my teacher with a little bit of an attitude. It will take a few days to get back into the swing of things but it isn't such a bad thing to shake things up a bit right?
On Friday night, all my cousins on Mommy's side got together for dinner and play time at Aunt Kristin and Uncle Lonnie's house. Despite warnings from Dr Morales you can see in the photo above I am not holding anything back on the mini-trampoline!
Jackson loves wrestling and poor Gavin got the brunt of all his excess energy! Jackson did slow down for a moment so Aunt Kristin could read us one of his favorite books - Mouse is Mad!
Peyton Nicole Smith
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