No Limits!

Sorry everyone its been a few days since I posted but it has been sooooo crazy.  What's new right?  The boys are all doing well and are soo excited to be getting requests for the bracelets.  We have now sent out about 40 bracelets and have given out about 20.  I have been asked several times what does the green bracelet mean?  I of course say CMT(Charcot Marie Tooth) and Carter's Challenge.  I will say this has been such a great idea, I love being able to spread the word just by a bracelet. 

This week Carter has been busy with Drivers Ed!  Thanks Pa!  He received a 90 on his first test and then he passed his other test, they didn't give us a score, but he now gets his permit!!!!! Woooo Hoooo!  He is excited but nervous and I don't blame him.  I remember I was sooo nervous when my dad took me out.  I had to learn on a stick. I told Carter how my dad took me to a parking lot and made me start and stop on this huge hill in the Business Park.  It was sooo nerve wrecking but after many hours of practice I never had problems with a clutch on a hill in S.F.  What is cool about his Drivers Ed class is they get to use simulators.  Carter says it is so fun, I guess he gets to drive at 90 mph on the game....just not in real life please....

Carter's 2nd appointment with his Physical Therapist went well.  She said she now knows his limits and what works for him and what doesn't.  She said it will be a work in progress.  Carter does stretches for his toes against a wall, he works with bands to help his hamstrings and calves and does lots of other things to help his Achilles heal and ankle.  It was funny cause I couldn't see him at one point, I had Ayden so we were up in the waiting area, but I heard Alise say to him "Carter I can see you, you are cheating!"  She then told her assistant to help him since he's a cheater! LOL.  I guess when he does some of his stretches with the bands, his feet tend to go outward and he needs to keep them neutral.  He also got his first taste of electrical stimulation, which is were they stick electrodes on your skin to contract certain muscles.  This helps strengthen the muscles and brings blood to the those muscles to help them heal faster.  I guess when he was getting this done she kept asking Carter "Can you feel it or are you numb?"  Apparently, he said he was numb so she had to keep raising the level up!  He said after raising it several times she was finally able to get the muscle to contract.  Carter said it was really funny because she kept looking at him like are you o.k. and he would laugh and smile at her. 

So she told us that he needs to do his exercises everyday no matter what, even if he is at a friends house.  Which is exactly what happened yesterday and today.  I guess he is keeping his word and following through with it. 

Yesterday, Carter and Carson left our house and said they were going on a walk.  Well that was at 7pm, I get a call at 9:45 from Carter, Tyler and Carson telling me "Ma!  We are at Chicken Express!  My phone is dead so I thought I should call you so you don't freak out."  I said "Too late."  At least they called....then I get a call at 11:45 saying we are at Tylers house and I am spending the night.  Come to find out that they had walked from Chicken Express back to Tylers house and around Castle Park, it is a pretty good distance from our house.  Carter said his knees hurt and his feet hurt but he kept on going.  It took about 45 minutes for the pain to go away but at least it did.  I told him today, no walking or running!

As for Zachy, he has had a great week.  He has been staying cool in the pool!  I am soooo glad that he loves swimming since it is one of the best things for his CMT.  We also went to Scottish Rite on Tuesday to get the results of his learning tests.  We arrived at 9:25 and didn't get out of there until after 2!  It was a great meeting but of course more work for me.  I met with the head Dr. and another Dr. for 3 hours and went over all the results.  Bottom line, Zach has ADHD.  She said he is "consistantly, inconsistant" with his work.  He is very smart but his ADHD is getting in the way.  She told me I will have to work a lot with Zach on getting him into different routines and I will need to get the school to make some adjustments to his IEP plan.  She really wants him to be able to use a keyboard in school since his handwriting is so bad due to the ADHD and his CMT.  I also have to get 3 different books on raising a child with ADHD and one book for Zach on what it is like to have ADHD.  She told me to read up on it and get him in to see his Dr. so we can get him on a medication that will work best for him.  Long story short, I need to make chore charts, house rules, daily charts...charts, charts and more charts.  All so he can be visually reminded.  She said I might have to repeat myself a couple of times.  Oh and I have to have lots of patience too.  Um, Houston we might have a problem....I don't have a lot of patience. I guess I will have to try harder...

On Wednesday Zach went to the Urologist and that was a interesting visit.  It was at Children's Hospital in Plano and we were the first patient of the day!  Love it! We did not have to wait and the visit was all about him. She first started with an ultrasound of his bladder full, then they had Zach empty his bladder and did another one.  Good  news is his bladder did empty almost completely.  Then we went on to some not so fun stuff.  A series of questions that no one likes to talk about....yep you guessed it, poop.  She pulled out the handy dandy "stool chart" which is basically like a police lineup where you pick the bad guy.  Anyway, after discussing this they took another ultrasound to see if his bladder was filling up like it should and if there was anything else going on.  His bladder wall looks great and so does his bladder, the only thing is his colon is pushing on his bladder and this could be the issue.  What do we do about it?  We make sure to go to the restroom every 3 hours, drink only 2 cups of milk a day, lots of water, lots of fiber and more.  I found out that Zach has been told he cannot use the restroom during the day at school because they are in the middle of a lesson plan or something.  The teachers ask him "Is it a dire emergency?"  The doctor flipped out and said "Yes, for you it is a dire emergency."  She wrote a letter to the school telling them if he needs to use the restroom they must let him every 2 hours for medical purposes.  I check back in with her in two weeks to see if there is any improvement with him and then take it from there.

Overall, pretty good week, just super busy.  I am a little overwhelmed at this point now that I have to research ADHD too.  But we do what we have to do to take care of our kids.  I have been super busy designing the logo for Carters Challenge and think I am done.  We will be trying to find someone to help us with it and load it onto the web.  If you know anyone that could do it for free please let me know.  We are trying to get all this done asap since big things are going to be coming in September!  There will be more on this next time.  Be prepared to help with CMT awareness.  Each and everyone of you will be asked to help. 

Until Next Time...........................Charcot Marie Tooth Disease-Funny Name, Serious Disease!

Week Off

Week Off!

I decided to let Carter take a break from the Doctors this week.  I can tell all the Dr. appointments and being poked at is getting to him.  We did have a stress EKG set up for Fri but I am going to move it until next week.  Right now we are waiting for the results to come back from last Friday's EMG test.  The Dr. did say he believes he has Axonal CMT and it is rare.  It just figures everything with Carter has always been rare or different, he can never be the "norm".  Ever since he was in the womb!  So as for now nothing new to update as far as Dr. appointments or results.  He has now posted on his facebook about the disease and is getting a ton of support from his friends.  I will say he has done an outstanding job in choosing his friends.  They all want to help and are praying for him.  They all want us to get T-Shirts made up for them to wear in support.  So this is on my to do list.  I have already talked to a couple of people about it.  We did get the bands made and hopefully those will be here in a week or two.  He and his friends are all excited about it.  If you would like one please feel free to leave him a message on the guest book about it.  I am not sure if everyone knows about the guest book or not.  It is a place that you can leave messages for Carter.  Inspiring Quotes, suggestions, words of encouragement, hellos and so forth. I am sure you all get it.  Well off to go clean! He is off to play xbox! Again! LOL.
 
Until Next Time......
Michelle and Carter
 

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Friday, July 15, 2011 8:45 PM, CDT

Inspire

The last 2 days have had there ups and there downs.  I can tell you one thing I have learned through this is that, Carter is someone that I inspire to be like.  I wish I had just a smidgen of the positivity he has.  Through all of this he has stayed positive and has a great sense of humor about the whole thing.  There was a quote on one of my blogs that I just fell in love with the other day and wanted to put it on here. I love it and believe it whole heartily.
"Motherhood is about raising and celebrating the child you have, not the child you thought you would have. It's about understanding that he is exactly the person he is supposed to be. And that, if you're lucky, he just might be the teacher that turns you into the person you are supposed to be." --Joan Ryan
OK. enough of the sappy stuff....Bottom line right now is Dr. Naylor said we are in a waiting game as far as Lymphoma or anything to do with the lymph nodes.  The reason being is his latest blood test from Tuesday came back pretty normal.  The immature white cells matured an went away.  All other lab work as well came back pretty good and he gained some weight!  He is at 117! The nurses and I were laughing because who would have ever thought you'd be so happy to see someone gain weight?  Dr. Naylor and the oncologist looked at his Chest CT Scan and found one lymph node on his left side in his chest wall that is "inflamed"  but not to much to be concerned with. Especially since they cannot feel the other node any longer.  They do want to keep an eye on his nodes, cough, fatigue and weight.  Because the steroids the ER gave him could have put him into "remission" if he has lymphoma.  So basically, we will go back in 5 weeks and redo full cbc and some other markers to see if anything spikes again.  If he starts to loose weight again rapidly, more nose bleeds, fever, cough gets worse, call in immediately.  As she told Carter "When you come back in I don't want to see any large nodes, no fever, no cough and you better get fatter!"  LOL.
Today July 15th we went in for the EMG test (nerve testing).  I will say so far this has been the most difficult thing for me as a parent.  Watching you child get shocked and needles put into him is not fun.  There was a point when he had a needle in his right knee and shocked Carter 3 times in a row that I could see his leg move and Carter looked up at me and said "That one hurt".  I would not wish this on anyone ever!  He was such a trooper and the Dr. told him he is going to win patient of the year award!  He couldn't believe how well he did.  I will say the Dr. was very kind and told us about everything before he did it.  He warned Carter as to when the shock would happen and made sure he was o.k. He believes that to get a diagnosis you don't have to "torture your patients".  After the first couple of shocks Carter said to us " I feel like Electro Man!"  We laughed and then a little later on the Dr. asked how are you doing?  Carter said " Good. I am having a shocking experience today!"  Dr. Flores said "Your stealing all my good lines."  Carter laughed and said " This is such an electrifying day!"  So despite being electrocuted and having needles put in him, he still found his sense of humor and made lemon aide out of lemons.  This is why he INSPIRES ME! 
Until Next time...........Believe........