Journal History
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Monday, December 17, 2007 2:02 PM CST
Hi everyone:
Sorry for the lack of updates, I have been taking it easy and hanging out working on websites.
My stomach finally felt better on Sunday from getting my new Jtube. I did get my gtube changed on Sunday evening so it was new like my Jtube. I like to have them changed at the same time so it easier to remember when each one was changed. I am still desatting down into the 60’s and 70’s at night, but after I switched back to DuoNeb from the perforomist, I don’t desat as often. We did notice one interesting thing this week, I tend to desat on the off days of my antibiotics. (I take zithromax on Monday, Wednesday, and Friday). We are calling Dr. Mueller tomorrow to discuss it.
I did get my new tires this week, so now I have traction again. It is a good thing since I thought I broke my toe and sprained my foot due to lack of traction. I did wear my resting splints for a few days and it is fine and no problems. Of course I had to give the DME crap about it, since they were supposed to be ordered in March, but of course, they didn’t get ordered until November! GRRRR!!
The Mr. Bear raffle is over. I raised over $800 for SMA Support. I am so glad it is over. It was an ambitious project that lasted over two years and it was stressful many times and frustrating setting it up, so I am glad that it is over and done with.
I can’t believe that it is almost Christmas time…where did the time go? Just seems like yesterday, I was starting the quarter and then was in the hospital and now, it is Christmas!! I have had fun being at the apartment and not having class. It has been very relaxing for me, Brenda has been making blankets like a maniac (she made 17 blankets this past week).
Please say lots of prayers for all my friends who are having or had surgery or who are sick. There are way too many sick right now. http://www.our-sma-angels.com/b4sma/prayers.htm Thanks for all your prayers and thoughts. I’m sure I am missing some, so please forgive me.
Not sure when I will post another update as I will be computerless for most of the rest of the year. I know I will have full access on January 5th, so until then (unless you are lucky), have a joyous holiday and a wonderful new year!
MJ
Quote of the week:
Let it be Christmas everywhere Let heavenly music fill the air
Let every heart sing let every bell ring The story of hope and joy and peace
And let it be Christmas everywhere Let heavenly music fill the air
Let anger and fear and hate disappear Let there be love that lasts through the year
And let it be Christmas, Christmas everywhere. ~Alan Jackson~
Thursday, December 6, 2007 7:03 PM CST
Hi everyone:
I am home and okay. My two days of appointments didn’t go like I planned but what else is new, right?!?
Tuesday I had my pulmonology appointment with Dr. Mueller. First of all the appointment was at 8:30am. So much for vacation time. We got in right away but since the office is now computerized, it takes a long time to check me in, adding all the meds onto the computer. I take forever since I have so many drugs. Anyway, Dr. Mueller was confused as to why my oxygen levels drop at night but we do know that part of it is due to my asthma/reactive airway disease (depending on who you ask). Mueller does not think that my asthma is the total reason but could be contributing to the problem. So, he added a new medicine to my list (just what I need, more drugs). So, I now only do my DuoNeb as needed as a rescue drug and do Perforomist twice a day. Perforomist is a long acting nebulizer that works for 12 hours. I started it yesterday morning and haven’t seen any benefit. In fact, last night was worse. I had to do two rescue treatments in the night and use oxygen to sleep. I kept dropping to 71 and staying there until a treatment was started, but coming back up took a long time. Anyway, the other thing that was a concern is that when I am using my ventilator, the air entering goes more into my right lung than my left lung. When I breathe on my own, without the vent, I have better airflow into my left lung than right. I can draw more air in without my vent on my own than with the vent…which would explain why I have chronic atelectasis (Plugs). So the thought is that my left lung could be collapsing some at night, which causes my desats and when I wake up, I take deep breaths independently and open up my lung. Just trying the meds to see if they will start to take effect before trying something else.
Yesterday we stayed in. It snowed overnight and got about 5 inches of snow. I did websites while Brenda made blankets. It was great to relax and do nothing for once.
Today was my second appointment. It was not a great day from the beginning. We arrived at the hospital to find the top parking lot roped off. The hospital just built a new parking garage and it is not accessible for us. Our van needs at least a nine foot access but the new garage was only eight feet. Brenda ended up driving through the exit to the old parking lot and parking. The security guard was upset that we weren’t following the directions. Brenda tried explaining to the guard why we don’t fit, but he tried to convince us that there was handicap parking in the garage, just didn’t get the concept of height! As much as I would love a convertible, I really didn’t want one today! Anyway, my appointment was with my favorite doctor, Dr. Ey. She is wonderful! Everything was ready to go to change my J tube (switching tubes). I bet you can guess what happened. The old J tube was removed after some trouble trying to pull it out and then having the new tube NOT wanting to go back in. The MicKey tube refused to go back in my tract. As Dr. Ey would push it in, the tube just wouldn’t go in and nothing would help. We tried a smaller tube which worked fine, but not the tube that we needed. After an hour, I was in a lot of pain and Dr. Ey asked us what we wanted to do. Thankfully, Brenda brought extra catheters with us and asked if we could just go back with what we were using. In about two minutes, the old style of tube went right in and I was done (with that part anyway). Dr. Ey asked why we were switching tubes from something that obviously worked! Then I had to have an upper GI. She wasn’t excited about having to do that since I can tell that I reflux sometimes, so we compromised with Dr. Carvalho (who wasn’t there and didn’t have a voice in the matter). Dr. Ey put 2 ounces into my stomach and then we stopped. I didn’t reflux that so we said, that was good enough. If you reflux into your lungs you get to go directly upstairs to be admitted and neither of us wanted that. So, we stopped and came home! The funny part of the day was that after the Upper GI was over, Brenda gave Dr. Ey an empty cup so I could “throw up” the contrast “gourmet” dye (I asked to not get barium and the contrast from my hospital stay, so they gave me the liquid gold/gourmet version which is the most expensive, but only the best for me) and I did, but then well, I came home covered with contrast. I harassed Dr. Ey that she threw up all over me. She spilled the cup on me so I am a glowing star! LOL! She was so embarrassed that she spilled the cup but I still love her anyway!
Tonight I am very sore. I feel like a punching bag if I am completely honest. It was not a pretty sight coming home. I laid down right away, but we didn’t get home until 4pm. So that was my last three days. I am glad that it is over. Next week should be much calmer and I am finally getting my other new tires!!! Traction at last! Hope everyone has a great weekend. Prayers to all of my friends who are under the weather.
If you go to my caring bridge website (www.caringbridge.org/ny/mjpurk) on the photo page you will see a picture of my new winter weather gear. (The front page picture is of my quality of life project that I made into a t-shirt.) Brenda made me a blanket for my legs to keep me warm. It looks like a regular tie blanket but I actually put my feet into the middle of the blanket and it keeps my legs warm front and back. The back of the blanket is only up to my knees so it is easy to get on and off and the front can tuck into my laterals to keep the wind from blowing under my coat. It kept me nice and warm and toasty today and for the first time in forever, my feet weren’t ice cubes tonight!
MJ
Quote of the week:
You are here to enable the world to live more amply, with greater vision, and with a finer spirit of hope and achievement. You are here to enrich the world. ~Woodrow Wilson~
Monday, December 3, 2007 12:07 AM CST
Hi everyone:
I’m back in Ohio after a rainy and icy trip. Our first day was pretty calm and clear and made really good time, but yesterday was gross. We left late because of the storm and it was icing until 10am. We left town at noon and drove in the rain almost the whole way home. In eastern Ohio, we sat on the interstate for about 45 minutes due to a car accident. From Columbus to Dayton we drove in heavy rain that continued while Brenda unloaded – she resembled a drowned rat when she was done.
It sure felt good to sleep in my own bed last night. Everyone who is around was quiet this morning and my apartment stays dark so I slept wonderfully! I didn’t desat at all last night so that is a big benefit. We are off to the post office today to send out a blanket and pick up mail. I will check and let everyone know how much we have made on the Mr. Bear raffle and who’s checks we received tonight.
I just checked and as of this morning, 129 SMA Calendars have been sold. http://www.cafepress.com/b4sma/1826918 Last year we sold 200 calendars but it is going well. There is still time to get your calendars before Christmas. They make wonderful gifts while supporting families with medical needs while spreading the word about SMA.
Anyway, my trip home went well. I didn’t do much and really hate dial up computer access. I only had slow wifi the last two days at home. Because of dial up I got behind on website updates and I apologize for that. I am caught up now.
Emma Elizabeth’s memorial service was emotional. As I sat, surrounded by Emma Elizabeth's family and friends, I was struck by something the minister said. He said that we will never forget Emma Elizabeth, she impacted more people in her 11 weeks than many people do in their entire life. For me, it was hard to watch my aunt. After the service, it was great to catch up with family and people I didn't remember.
Brenda had a good time at home. I think all Brenda and her mom did was sew and paint. Brenda and Janis made 21 blankets and Brenda brought home 10 cross stitch pictures. Aunt Joann and Janis stitch them up, Joann gets them ready to be framed and Brenda paints the frames. It was fun seeing all their hard work. Brenda’s flight was delayed out of Detroit on the way home, but she arrived safely. You can see pictures here http://tinyurl.com/yqpgnq
Friday we met grandmother at the mall for lunch at Cheeburger Cheeburger. I love that place. They make the best burgers! We went shopping and bought clothes. I have to do lots of volunteering for class this quarter so I needed some dressy clothes.
Anyway it is good to be back. Tomorrow at 8:15 I have an appointment with Dr. Mueller. He wanted to see me before I left but we had to head home. We are going to be talking about my twitchy airway and what to do about it. Not much to do, as I am doing nebs and only using oxygen if we can’t get my neck in the right position. Thursday is the big day of getting my J tube changed. We might also do the Upper GI study if the paperwork came through. Dr. Ey and I are not looking forward to that part! I will send an update Friday to let you know what happens at my appointments. Hopefully, it will all be good news.
Prayers for all my friends who under the weather. http://www.our-sma-angels.com/b4sma/prayers.htm
Quote of the Week:
"Imagination is more important than knowledge. Knowledge is limited. Imagination encircles the world." ~ Albert Einstein
Thursday, November 15, 2007 9:36 PM CST
Hi everyone:
Saturday is vacation time!!! I am so ready to be done with classes. I have my last final at 3pm tomorrow and it is 100 questions.
I just heard back about my Drugs test I got a 74/75. Not sure how I did that but, who cares. I am still missing my log grade, but that is only worth 10 points…so there are 30 points left to be counted and I only need 10 to get an A, so I am excited about that.
Anyway, Brenda and Angela have been brainstorming about my desatting episodes. They both believe it is my RAD (reactive airway disease – or asthma) acting up. Tuesday night, Brenda tried doing a regular saline neb during one of my visits to the 70’s and it did nothing (while on 2.5 L of oxygen). So, she added DuoNeb and my sats started creeping back up. Last night, the plan was for Brenda to try and wake up and do nebs every 4 hours and she didn’t have a problem, because every 4 hours I started to desat. I didn’t even need oxygen last night. Dr. Mueller made me get an X-ray today to rule out pneumonia even though I sound great (it was fine).
Our van is not back yet, so a rental was delivered to us this morning. I still think we should get frequent rental miles with the company that can be applied to buying a minivan, don’t ya think!! LOL! It is sad when they know where you live and everything about you when you have only been here for 15 months. The minivan is like the last one except a dark blue. The big van should be back in the morning, which is good so we can pack!
This afternoon, I had my bandage changed at the hospital. Last one until I get my tube changed on December 6th. It went great. Dr. Ey did the change again. We also talked about my tube change in December – she agrees with me that I do NOT need to be sedated and that the modified Upper GI is a waste of time, but if it is ordered, she will do it, but make sure I don’t reflux!! LOL! I am so glad that Dr. Ey will be changing it! Today, it was so cold. Yesterday it was 66 degrees and we woke up this morning to snow and this afternoon it was icing! YUCK!!!
Please pray for all my friends who are sick. There are way too many kids that are sick so early in the fall. Keep praying for my cousin Emma. All the prayers do help.
Remember, it is not too late to order your SMA 2008 Calendar from http://www.cafepress.com/b4sma/1826918 . Sales are going pretty good so far. There are also SMA Awareness Shirts with the Calendar fronts on them. They are at http://www.cafepress.com/b4sma/3677699 .
MJ
Quote of the week:
Gratitude unlocks the fullness of life. It turns what we have into enough, and more. It turns denial into acceptance, chaos to order, confusion to clarity. It can turn a meal into a feast, a house into a home, a stranger into a friend. Gratitude makes sense of our past, brings peace for today and creates a vision for tomorrow. ~Melody Beattie
Tuesday, November 13, 2007 4:02 PM CST
If it's not one thing, it's another. I'm going to (for those of you on the SMA Support chat) echo Suzanne's post. We too, are beyond frustrated, although for different reasons.
Where shall we begin! Let's start with the next door neighbor...Last week one of my neighbors in the apartment building decided to plug an air freshener in in the HALLWAY. Now, I will agree that the hall does smell "interesting" sometimes but I ended up being allergic and having broncho spasms. My CA (equivalent to an RA), Monique, unplugged it and took it in her apartment so I would quit having spasms. Today, it was back! Thank goodness for Monique who unplugged it yet again and, this time, mass e-mailed the apartment building saying they can't do that. Thank you Monique!!!
What else...oh yeah, I'm majorly desatting again. The other night Brenda saw, umm, 59 as my oxygen saturation level. (definition: I'm normally between 97 - 91 at night) We've been having to use supplemental O2 through my vent. We have been attempting different positions, nebulizer treatments, etc. which leaves Brenda downright tired. (She is sleeping as I type).
To top it all off, today the van died! It would start but as soon as Brenda would take her foot off the gas, it would die. Thankfully Mr. Hendricks (Hendricks Auto & Truck) was able to come out to campus and get it. They don't know what is wrong with it so we will have to wait and see.
I think that's all the "bad news" I can stand for awhile. I did get back my biology test score...I got a 93 on the last test which leaves me with only an A for the quarter. I took my Drugs and Alcohol test today and it wasn't too difficult. I think, okay I hope to get an A in that class as well. Thank God my little cousin Emma Elizabeth is doing a bit better, as of yesterday. You can read the jist of her update at http://www.our-sma-angels.com/b4sma/prayers.htm
Please continue praying for her and all the other kids on the prayer page!
Quote for today:
"Laughter and tears are both responses to frustration and exhaustion. I myself prefer to laugh, since there is less cleaning up to do afterward." ~ Kurt Vonnegut
MJ
Wednesday, November 7, 2007 8:43 PM CST
Hi everyone:
Just had to send out a good update today, mostly all good news!!! It is only Wednesday so I had to send out my week so far.
Monday, I had my bandage change. Dr. Ey wasn’t there so I immediately got nervous, but Dr. Hanahan came in (she is the awesome radiologist who inserted my PICC line) and changed my bandage! It went really well. She listened to Brenda and I and what she had to do and did it. My appointment was at 2:30pm and we were back in the van at 3:00pm. It was a good day.
Tuesday was the last day of my Drugs and Alcohol class. I turned in my writing log and my 10 page paper on Drug Advertising in Magazines. We actually got out early, so it was a nice short day! I think I had a virus or yesterday. We got back to the apartment and I didn’t feel well and asked to lay down. I even slept for a bit and felt like I was going to throw up. I also ached all over like the flu, but it must have been the 24 hour flu/virus or something.
Today was my first part of my biology: biodiversity test. It was 35 questions and I was done in 15 minutes. It wasn’t as hard as the first test so that was good. After class we mailed out two more blankets and came home. This afternoon I had my follow up appointment with Dr. Carvalho, the GI doctor. I was a little nervous and worried how it would go. Before we left we had a phone call from Dr. Bethel. We had called him after I was admitted but he was on vacation. Anyway, Brenda talked to him for quite a while to make sure everything we had been doing was good since Dr. Dufus was no help. It was great to talk to Dr. Bethel and have him be in on what has been happening and to hear that everything radiology and GI had done was absolutely correct. Before we went to the doctor we stopped up in PICU to visit my favorite nurses. I took them the video I made from my hospital visit. It was good to see them as a visitor and not a patient!!
Anyway, my appointment with Dr. Carvalho went great. We went in and he came in and we started talking about my diet. He said it looked great and that 1.5 packets of Tolerex a day was great and he thinks that will be perfect for me. We talked about supplements and the Miracle 2000 and he had never heard of it but if it works, he would leave it for now. Regarding the tests he mentioned in the hospital, those are out. We think he read up more about SMA because he realized that I can’t fast for the one test he wanted to do. So, the plan is, to leave my diet as is for now. On December 6th I get my J-tube replaced. If possible, they will do a modified upper GI to check the status of my Nissen after my tube is replaced. I convinced Carvalho that I do not need to be sedated for the replacement so he agreed to that. I will then go back and see Carvalho again in January (have to call and make an appt since we closed clinic today – everyone had left by the time we were done). At that appointment, we will meet with his nutritionist to go over nutritional requirements. I will also have the complete blood work done to check for everything that needs to be checked to make sure I’m where I need to be. If I am lacking somewhere, they will work with us to make it up in food supplements or other supplements. The nutritionist will not alter my Tolerex formula and Dr. C knew that milk products are a no-no for me and they will work with us. There was a med student today with Carvalho and we were quizzing the student about G-Tubes and why kids with SMA have problems maintaining potassium levels and everything. Dr. Carvalho knew it and we were impressed. We didn’t have to struggle to teach him anything and he knew what the nutritional challenges he faced. So that is the good news. Now, the bad news. He diagnosed me with another new condition. See the picture to see what my new condition is.
I have my last biology lab tomorrow and part two of my biology final tomorrow. Next week I have 2 finals, one on Tuesday and one on Friday. We will be busy packing and getting ready for vacation. Please continue to say prayers for my cousin Emma Elizabeth and her family. She is still in the hospital and having problems. Also prayers for all of my friends who are having problems and are in the hospital or home fighting illnesses. This is the time of the year that all families whose kids have SMA really dread. Colds, flu and viruses are out there and each one is a great risk. Prayers to everyone!!
Quote of the week: “Imaginary obstacles are insurmountable. Real ones aren't. But you can't tell the difference when you have no real information. Fear can create even more imaginary obstacles than ignorance can. That's why the smallest step away from speculation and into reality can be an amazing relief. The Reality Solution means: Do it before you're ready.” ~ Barbara Sher ~
MJ
Sunday, November 4, 2007 12:38 PM CST
Hi Everyone:
Week 9 is over and one more week of classes is done! Friday is my last day of classes and then I have finals the following week.
I finished early with one of my online classes. I got an A in Decision Making! Yes, I took a class in decision making. I wasn’t sure I was going to like it, but it turned out to be okay. Every week, the professor would give us a prompt and we had to research a specific type of decision making style and answer it. We also had to reply to one other student each week. Besides that, we had 3 papers to write about a specific topic and our final was a debacle about a topic that interested us. If you guessed that I did my final about SMA, you are correct. I did it on Quality of Life and the disabled (thanks to everyone who helped out). I ended up with a 300 out of 300 points.
My biology class, Biodiversity, will be done on Friday. Our two part final starts Wednesday and ends on Friday. There is an optional final if we wish to take it, but I do not plan on taking it unless I bomb the test. I’m not quite sure where I stand, but I either have a B or an A- right now and that is fine by me. The first test, I got an 87.5 and the class average was a 68, so I’m happy with that. In Lab, I have an A so that will help bring my average up.
Medical Terminology is almost over. I just did my last quiz and only have the final left. Of course, my final is on the last day of finals at 3:15 until 5:15. UGH!! We are driving back to New York and I was hoping I would be done early, but no such luck! Right now, I have an A (98�going in the class. I don’t have my last quiz grade back, but my average is good.
My Drugs and Alcohol class is going okay. The classes are dreadfully long and some days, almost impossible. This past week was horrible. He only kept us from 12 until 3 (we are out an hour early) but Brenda had trouble staying awake and so did I. We had to watch this horrible movie from 1936 and it was dreadful! I have my final paper due this week and then next Tuesday is our final. I have an A going in this class. Got an 89 on my first test, but my writing portion brought my grade up to an A.
So, I am going home on the 17th for 2 weeks. I have a 6 week vacation but will only be home for 2 weeks. Brenda is flying home after we get to New York for a week. I wish I had longer at home but there is a good chance I will be computer-less so that will make it an extremely long two weeks if I can’t be on the computer. I also have to be back in December for doctor’s appointments so we are coming back early. I will spend the month either here or at GJ’s.
Other than that, things are going okay. My stomach doesn’t hurt anymore. I still tire out easier than previously but I’m doing fine. Never did get back to my normal rate on food of 90cc/hr, but I’m at 85 an hour and still feel fine. I go Monday to get my bandage changed again and I’m glad, this one is getting itchy!!! Still working on the diet issue, but doing okay. We had fun with my diet at GJ’s yesterday in defining what a real AA diet should be, email me if you want to see our definition (it is a funny staged picture, so don’t worry, I didn’t switch). LOL! We have too much fun!
Big prayers heading out to all of my friends who are sick. (www.our-sma-angels.com/b4sma/prayers.htm) This has been a rough year so far, but prayers sure help! Everyone have a good healthy and safe week! Make sure you changed your clocks last night so you don’t show up to work at the wrong time tomorrow.
MJ
Quote of the week:
The most wasted of all days is one without laughter. ~e.e. cummings
Sunday, October 28, 2007 11:57 AM CDT
Hi Everyone:
I have survived my first week back to class. I only have 2 more weeks and then finals week. Where does the time go??
I had a pretty good week. I got my make-up labs for biology and am working on them today, along with taking my medical terminology quiz, and writing a paper for drugs and alcohol class. Lots to do and so little time left (only the labs are make-up work, the rest is for next week). Oh, if you want to see pictures of the beautiful sunset that we saw on Wednesday, after visiting GJ’s, go here…
http://tinyurl.com/2xpwzs
This coming week is a slow week, thank goodness. I only have one appointment this week and that is Friday afternoon to FINALLY get my new tires on my power chair. It has taken so long, it is ridiculous. No medical appointments so that is good, I have seen Children’s way too much this month!
Yesterday, Brenda and I went to the OKI FSMA Halloween Party. It was held at Skatetown USA. I decided to think outside the box or the tube and be totally unique!! The name of my costume was Tubie or Not Tubie….I Love my Tubies (think To Be or Not To Be…that is the question). I took extra G-tubes, J-tubes, and catheters and filled the balloons up with Kool-Aid and fastened them to my chair, my shirt, and my pants. Very unique, don’t ya think???!??!? I had a great time skating and hanging out. I got to see many old friends and met a new family, so what could be worse. If you want to see the video montage I made, please go here….
http://tinyurl.com/ywunpq
That is all for today. Time to do homework. Please say prayers for Charlie and Hannah who are having surgery this week. Also pray for all of my friends who are under the weather this week. Hope everyone has a safe Halloween and a wonderful week.
Hugs
MJ
Thought of the week: “This is my wish for you: Comfort on difficult days, smiles when sadness intrudes, rainbows to follow the clouds, laughter to kiss your lips, sunsets to warm your heart, hugs when spirits sag, beauty for your eyes to see, friendships to brighten your being, faith so that you can believe, confidence for when you doubt, courage to know yourself, patience to accept the truth, Love to complete your life.” – Unknown
Tuesday, October 23, 2007 8:43 PM CDT
Hi Everyone,
I'm sure you're tired of seeing that title but several of you asked me to update. So here it is. I went back to class yesterday, biology, and did ok. My professor was funny when I thanked him for being so understanding. He said he doesn't really care about his students but he does care and worry about me. Odd but kind of nice to hear. Oh! You'll never believe the phone call I got Sunday night. I was hanging out, watching TV, and Brenda's cell phone rings. She answered it and was saying "no, no, she is going back tomorrow. Sure you can talk to her right now."...I got on the phone. It was a lady from student support services. She called because, are you ready for this, she wanted to see if I wanted to drop out of college! WHAT??!!??!! Why would I do that? I calmly explained that I was only behind (other than reading) in biology lab but that I would be taking care of that on Thursday. Anyway, she said that Monday (yesterday) was the last day to drop a class without a grade so if I wanted to drop I needed to decide quickly. I "uh huh'd" her until she was done with her lecture and, as nicely as possible, said that I didn't think I needed to drop any classes or out of college completely. UGH! Some people! So much for SUPPORT staff, more like discouragement staff. We complained to Disability Services (they sent her) and asked that she never contact me again. I have enough negativity in my life without someone from the college encouraging me to drop out. UGH!!
Anyway, the reason for my update, is that at 3pm today, I went back to the hospital yet again! No, don't worry, I did NOT stay. Brenda was able to talk Dr. Ey into changing my bandage this afternoon and NOT waiting for Dr. Dufus to get it ordered! I also got an appointment with Dr. Carvalho for November 7th.
So, I am back from my bandage change. It is pretty scary, when you walk into the hospital, and people recognize you…everyone from the cleaning crew to security. Walked passed ER and everyone waved. Today’s change under fluoroscopy went great! Luckily the fluoro table was somewhat accessible. Brenda was able to get the lift under most of the table and I did not have to be transferred to a gurney and then to the table. That relieved a lot of stress let me tell you. Anyway, Brenda was able to transfer me by herself and I was ready to go. Dr. Ey came in and asked me a few questions and away we went. Got the machine over the top of me and Dr. Ey started shooting the dye in…of course, I scared everyone when I said, “It is leaking out!!!” Everyone started looking and feeling around under the machine, but no, it wasn’t leaking from my tube, it leaked from where the syringe connected to my tube. As Dr. Ey pushed the dye into my tube, most of it went down my side!! LOL! OOPS!!! So, under my tube wasn’t too bad, there was a bunch of “goobers” and some blood, but it wasn’t too gross. Dr. Ey added my Ciprodex drops and added another bandage to my tubie. I was then free to go. Before we left, I scheduled my next appointments for the next 6 weeks.
I return to radiology for a bandage replacement on November 5th. On November 7th, I go see Dr. Carvalho in GI clinic. Of course, he will tell me I have to lose weight and we will go back and forth about that but what else is new. Then, during finals week, on November 15th, I will go for another bandage change. I think I will get frequent flyer mileage from all the visits I will be having to see Dr. Ey in Radiology. After I return from New York, I will go back on December 6th to have my tubie changed. Hopefully, after that date, I won’t have to return to radiology for 3 more months.
Hopefully between now and Christmas there will be NO MORE SPEED BUMPS. I think I have had enough excitement the past 2 weeks to last the rest of the school year.
I am doing okay. Been tired but if I keep busy, I sleep better. I did cut back on some extra activities (I was supposed to help teach a class tomorrow, but decided that extra sleep is what I need more than anything else right now). I am doing okay, so don’t worry, I am taking care of myself.
Quote of the Day:
Dream lofty dreams, and as you dream, so you shall become. Your vision is the promise of what you shall one day be; your ideal is the prophecy of what you shall at last unveil. – James Allen
Sunday, October 21, 2007 12:31 AM CDT
Hi everyone:
So, I am home from the hospital and enjoying it. I really enjoyed not getting woken up by a surgical resident at 5:30am, prodding my belly and asking me if it hurt and other questions. I slept soooo good, it was amazing. I went to bed at 11:30 and slept all through the night until 9:30am. I feel more refreshed today, it is amazing. Brenda got a good sleep last night too. Dad flew home this morning so I didn’t see him before he left
So a little backtracking here, Brenda had written yesterday morning that I was officially discharged at 10:30am, but had to wait for a prescription to be written and a surgical resident to come change my bandage. So we waited and waited, only to be informed that Dr. Dufus was coming in to see me. (Just an FYI, Dr. Dufus’ real name is Dr. Hitch). Dr. Dufus keeps teasing everyone saying he is retiring, but he never does. If I was mad at him, the nurses would ask who and as soon as I said Hitch, they would all nod and sigh and agree with me. He does have a lot of knowledge, but you have to demand and prod him to give you an explanation.
So anyway, Dr. Dufus finally arrived at 2pm. He came in, plopped down on the couch and asked us who said that I get to go home. We all looked at each other and said, “everyone”. Pulmonology said I was free to go at 10:30, but when we asked Pulmonology to change the bandage, they said to ask the nurse, who called surgery. Dufus said that he wanted me in the hospital for a few more days at least and to have the tube changed before I left, with a series of studies to check to make sure everything was fine. He was not happy with Dr. Carvalho’s decision to wait six weeks and let the intestine heal at all!!!! Dufus and his resident look dejected that they didn’t get to perform surgery on me, but do I care, NO!!! So, after dad and Brenda told Dufus we were going home, there was nothing he could do but say, whatever!
Dufus didn’t want to change the bandage in the room. Because my tube is held in by the bandage, he was afraid that removing the tape would cause the tube to move itself and putting me at risk for another perforation. So, since Dr. Ey (pronounced “eye or I” - the wonderful radiologist) wasn’t on call this weekend to do it, I have to go back this week hopefully to have the bandage changed under fluoroscopy. The reason I have to have the bandage changed is because of me. First of all, the bandage is tan and thick and sticky. It has been surrounding and holding my tube down since Oct. 9th. Second, I am such a yeasty person and I have a systemic skin yeast infection now from all of my antibiotics that we are afraid to see what is hiding under that dark damp bandage. Lastly, it is itching like crazy!!! It is starting to drive me crazy!! So, in the next 6 weeks, I will have to go have my bandage changed under fluoroscopy a few times. I believe I will be glowing from radioactive dye by the time Christmas comes around and that we won’t need lights for the tree, it will just be me! LOL!
So, Dufus left and the IV team was called in to remove my PICC line (didn’t hurt at all) and then I got dressed in real clothes and we headed home. I think we didn’t get home until after 3:30 or so. Dad and Brenda got everything unloaded in 2 trips, so that was good. They then got my bed ready and cleared a path for me to park and use my lift to get me in bed. Of course, then Brenda had to find my power cord and external mouse so I could inform everyone else that I was HOME! While I was on the computer, dad and Brenda did laundry, unpacked most stuff, took out garbage, and cleaned up. I’m glad dad stayed with us last night to help Brenda unload everything and get stuff organized. I ordered dinner from LaRosa’s. Although I didn’t eat much, it sure tasted good!!
So, my day already has been productive. I did my breathing treatments while checking email, made a montage of my pictures from the hospital, already took a make up quiz that I missed from last week, worked on my assignment for tomorrow for another class, and wrote my update. I can hardly believe that it is already week 8 and that I am almost done with this quarter. At the beginning, it went so slow but my unplanned vacation (NOT) sure changed things. I am just glad that midterms were over and I had worked ahead in my other classes, so that I am not too far behind.
Thank you so much everyone who has called, emailed, sent cards or presents and everyone who has prayed for me. It sure helped knowing that you all were there for me and encouraged me when I got down. Please keep my other friends in your prayers too, http://www.our-sma-angels.com/b4sma/prayers.htm . Every prayer and thought does help make a difference.
I will try to keep everyone updated this week as to what is going on. I will be busy reading my biology and drugs and alcohol book and doing a little back work. Mostly I am caught up except in reading the chapters. I did miss 2 biology labs, and one more medical terminology quiz, but at least I am not too far behind. Between classes and homework, I have a feeling I will not be online much and will be down in bed a lot.
MJ
To view my montage video, please visit:
http://tinyurl.com/2gc5pl
Quotes of the hospital stay:
There is no medicine like hope, no incentive so great, and no tonics so powerful as expectation of something better tomorrow. -O. Swett Marden
A sense of humor can help you overlook the unattractive, tolerate the unpleasant, cope with the unexpected, and smile through the unbearable. -Moshe Waldoks
Saturday, October 20, 2007 10:30 AM CDT
We are packing things up and waiting for surgery to come figure out a bandage/securement method to hold MJ's J tube down for the next 6 weeks. Then we will be out of here. Have to remove the PICC and get a prescription for Farrell bags. But then we will be home later this afternoon!
Friday, October 19, 2007 8:00 PM CDT
Hi guys:
We are looking to hopefully get out of here tomorrow. MJ was taken off TPN and lipids today so she is just on jtube feeds. Right now she is up to 55 and in a half hour, she will be up to 60. She has 1 more dose of zosyn left and one dose of diflucan left before they will remove her PICC line (in the morning). MJ is back on her regular oral intake, but very diminished. She had grits and sausage gravy, cheetos, pudding, and potato today...only a couple bites of each before she was full!
Dr. Dufus came in this morning and sat down and talked. Everyone told him that we were concerned and questioning what he wanted. Basically, the foley cath we have been using as a j tube is no longer an option. We have to come up with a different tube to use. Dr. Dufus suggested a mini button or a GJ tube that hopefully wouldn't cause dumping syndrome by pushing it far down the tract. We asked for a referral to GI and we were granted a referral. Dufus asked for the new GI doc to come over which he did. Dr. Carvalho came around 1pm and asked several questions and then came back at 4:30 to talk more. He actually knows what SMA is and understood the concept of an amino acid diet (just unsure why we chose Tolerex over Vivonex). We talked about caloric intake and tubes and options and way to much info overload as MJ said. They are all worried about the future health of MJ's intestine and talked in length about her fundo, g feedings vs j feedings. His preference is to stop J feedings for 6 weeks, but since she is already doing them, he said to continue. Her current foley will remain taped into her tract for 6 weeks, when we will have it switched over to a Mickey G tube like she has currently in her G tract. It will be placed in radiology. We are going to try this Mic G for now and see what happens. He threw out the option of feeding into the G during the day and the J at night. We told him about MJ's reflux history and that she is currently refluxing again we believe. She is on Prevacid and Zantac and feels better on it, with less bronchospasms than this spring. He talked about doing a reflux test in radiology (not really interested in it) where they push as much dye into her belly and see how much it takes before it refluxes. I don't think this is a good idea, if you know what I mean. He also talked about redoing the Nissen if her lung health deteriorates any more. Carvalho also wants to determine the max calories she should be eating per day and to limit her intake some but to give her maximum nutrition. He did understand the concept of amino acid overload and agreed that a max of 2 packets a day was the key! Impressed us with that part. He is a very good doctor and spelled out all options for us which we liked.
So, if they can get everything in order we will be home tomorrow. We are more than ready to escape. We never did see Fink today so hopefully, he will be in early tomorrow (Ha Ha, on a weekend) and set us free!!! Since we didn't see him today, MJ didn't get to give him a present...an old plug. Karen and Sue, you might have been grossed out, it was a hard solid string of mucus! We gave it to the nurse and RT and they were grossed out. No one knew what to do with it so they put it in a sterile container and there it sits. LOL!!!
Hopefully, you will here from us tomorrow, if we aren't to exhausted or Sunday after we wake up in our nice comfy beds in our apartment. Thanks for the continued prayers.
Brenda and MJ
Thursday, October 18, 2007 8:25 PM CDT
Hi everyone:
Things are progressing slowly but still progress is being made. Tuesday we started feeds at 20cc/hour and it stayed there until this morning (Thursday). MJ was hooked up to a Farrell bag to vent extra pressures out of her Jtube yesterday morning. We really didn't think it was working but noticed food going higher and higher up the tube, so we stopped the feedings for a bit. Dr. Dufus came by and totally confused us. First of all as he came by, he mumbled about tubes and doctors and sizes and such but it was unintelligable. He went to the doctors station and his resident came over and asked what MJ's tube size was for the G (16Fr) and left then came back right away and asked for the J(14Fr). After a few minutes Dr. Dufus came back and said, "I talked to Dr. Mueller, your doctor, who is talking to Dr. Fink (on call this week or month or something), who is talking to Dr. Ey (radiologist) about tubes, okay?" He then turned around and walked away! MJ and I sat there with an ultra confused look on our faces. The resident came over and asked if we understood what Dr. Dufus said. Basically, Dufus wants to give MJ a GJ tube into her J stoma. Not sure how a GJ can be inserted into a J place and be both????? Of course, he hasn't talked to us or anything since GJ tubes have NOT worked at all for MJ in the past. Dufus's associated came in this morning and said that they were working on getting MJ scheduled for radiology for the GJ Tube and we questioned him soundly! Basically he left quickly and the residents and nurses all questioned the surgeon as to why we are going to change tubes when up until last Tuesday everything was fine. So, who knows what the heck is going on but we are NOT going to do a tube change just to satisfy Dufus's urge or desire. Anyway, today we started increasing MJ's feeds by the 5 by 5 rule. We go up 5 cc every 5 hours until we are closer to our desired level. They wanted to go from 20 to 45 today right away, I refused. Pretty much, they are letting us do what we want. MJ was up for 4 hours yesterday and over 3 today. While up, the food and bile backed up into her Farrell bag...the pressure when she is sitting is much higher than in bed, so we will probably go home with our own supply of Farrell bags, which is fine if it makes MJ feel better. Today, MJ got to eat solid food. She got up and we hit the cafeteria...she ate Ranch dressing (it was gross), 2 teaspoons of shredded cheese and 3 oyster crackers. She also drank 3 oz of water downed Pepsi. Tonight after I returned from the apartment, I picked up Bob Evans. MJ at 4 bites of mashed potatoes with sausage gravy on them. The food still likes to travel the path of least resistance, up the Farrell tube, but we are keeping an eye on it. Right now, MJ is watching her video montages of Massachusetts and Camp Harkness before Gray's Anatomy comes on. She is now at 35cc/hr and doing okay. Hopefully we will know more tomorrow. We thought we were going home Saturday, but 2 different people came in and said Monday (no one tells us anything). That is it for now. Not much else! Big hugs to everyone and prayers to all our sick friends, either home or in the hospital. We are trying to keep a prayer list for all our SMA friends but are falling behind again, but here it is! www.our-sma-angels.com/b4sma/prayers.htm
MJ and Brenda
Tuesday, October 16, 2007 11:00 AM CDT
Sorry, to send 2 right in a row, but.......
SHE IS EATING ICE CHIPS RIGHT NOW!!!
We are starting feeds at about 20cc/hr and going up by 20cc per day. They are looking for us to go home this weekend if feeds continue going well. MJ will be hooked up to a ferrel bag at first to allow air to escape if needed. Otherwise, things are great!! They will be in soon to get her started on feeds after I mix the food, but we are headed in the right direction! Just had to share the news!
10:39 AM CDT
Hi all:
As of right now, the test is 2/3 done. They are going to do X-rays throughout the day. We had the test at 7:30am. They injected 240cc of dye into her and it is now coming out of her just as quickly as it entered! The preliminary readings show that the perforation has closed. After the rest of the X-rays are done they will decide when she can start to eat. We are going to have to fight about the amount of food she can get without risking dehydration and using Tolerex (but you know me, I will be making the food)!!! For a while, all Jtube changes will be done here at the hospital, which is okay with us. We are also going to demand GI consults just to have them on board. Hopefully later we will have the official report back and find out how long it will be before we can start feeds. We will be starting at 10cc and working up from there and not stopping TPN until she has enough calories via Jtube.
Sunday, October 14, 2007 6:29 PM CDT
HI all:
It is Sunday evening and things are status quo. Nothing much new to report. Saturday, MJ got up and got a bath and then up in her chair. She drove down to the family lounge and around. She made it two hours before she laid down. To get up in her chair it took 4 people. Tim managed the lift, I had the drainage tubes, one nurse had the IV pole and the other nurse had the IV wires. After 2 hours, MJ needed down where she zoned out the rest of the day. She was exhausted!! Grandma June and Uncle Chris came down for a visit. Thanks WWAJ for all of our surprises! Last night we vegged out. MJ's night nurse brought me a recliner chair to lay next to MJ and Tim slept on the couch. MJ was asleep before 11pm. How is that for a surprise?!?!?! We all slept really well. MJ woke up at 9am. All of the nurses and doctors let us sleep in this morning.
MJ had some cardiac issues this morning relating to a drug. MJ is needing her liquid albuterol but can't have anything via mouth, Gtube, or Jtube so they came up with a cousin of albuterol. It was to be given over 5 minutes....she got it over 15 minutes and her heart rate jumped from 95 to 140! She felt like she was going to pass out. That delayed our day for about an hour or so. She still feels "fluttery" but her heart rate is back down. MJ has been using her vent most of the day. After we got it settled down, MJ got up in her chair. We had a visitor this afternoon. Thanks Marty for coming over to visit. MJ was up in her chair driving and watching a video for 3 hours today. She did great even driving without her tray. Having the drainage tubes makes using her tray very difficult. MJ rested this afternoon and has enjoyed being spoiled by the nurses. For the second night in a row, she got her hair washed. Tonight will involve watching TV and relaxing. No, she hasn't done any homework yet, after getting up, she is worn out the rest of the day.
Tomorrow will involve the same. Nothing will be decided until Tuesday after MJ heads down to have dye inserted under flouroscopy to check the perforation. So, until Tuesday, we sit and wait patiently. Hurry up and wait is the theme of the week. Thanks so much for all your prayers, emails, calls, and gifts. They sure do cheer MJ up! Thanks for everything. Keep praying for a healing of her intestines so feeds can start up again.
Brenda & MJ
http://www.our-sma-angels.com/b4sma/prayers.htm
http://www.our-sma-angels.com/Margaret
http://www.our-sma-angels.com/b4sma
"Far away in the sunshine are my highest aspirations. I may not reach
them, but I can look up and see their beauty, believe in them, and try
to follow where they lead."
~Louisa May Alcott~
Friday, October 12, 2007 11:59 PM CDT
Hi all:
We had a fairly quiet day today. MJ had a pretty good day. She asked for homework so she is bored. Surgery came in this morning and transferred her care officially to Pulmonology or more specifically, Dr. Mueller since he knows her. MJ was also transferred from PICU to IMCU (Intermediate Medical Care Unit or step-down). We didn't change rooms or anything, just status and a slightly cheaper room rate!!! LOL! Dr. Mueller came by and adjusted things in her TPN calculations and agreed with the status of waiting pattern. Grandma June and Aunt Jill came down to visit today and the nurses said we were having too much fun. After they left, I went to the apartment. MJ made me a list of things she wanted. Tomorrow, MJ has to start getting up in her chair for at least an hour a day. MJ's right hand is very stiff and weak, so not sure if she will be able to drive tomorrow and she hasn't sat up straight since then, so we will see how it goes. MJ also heard back from most of her teachers and they were all wonderful about helping her finish the semester off. Thanks everyone who has called, emailed or sent gifts. They have really helped cheer MJ up. This was not on her "schedule of fun things to do" list and hates the waiting. At least surgery was avoided so that is even better. Not sure when I will send another update since nothing is scheduled until Tuesday. Big hugs to all.
Thursday, October 11, 2007 6:14 PM CDT
So, the dorky doctor made his appearance this afternoon and finally "revealed" his plan. For now, if things go status quo all weekend, on Tuesday, we will flush her jtube, check the placement and if that is okay, MJ will start being fed via her jtube. After we got back from IR, MJ got her regular IV line removed and a bath. Her right hand, where the IV was is all stiff so we have it wrapped with heat packs and yellow gauze (looks like she got a cast). MJ's heart rate is still down and even hit 97! We are so happy and excited that the perforation appears to be healing! Sorry I am overwhelming you with MJ updates, but we had to share the news. Keep on praying as they are certainly working!!!
Thursday 6pm
We are all back from Interventional Radiology. We have success!!! MJ sports a new PIC line and it went pretty smoothly. It took longer to do the set up and clean up then the actual procedure. MJ was given Morphine along with Versid and did great! She is feeling the effects still but maintaining good sats. She is now officially on TPN and lipids so we are good to go! The best news is that since we started TPN (25 minutes) her heart rate has dropped to 105!!! How awesome is that! Keep up the prayers! Thanks for the e-notes that have already been delivered. We came back from IR to 3 ecards, 3 flower bouquets, 1 balloon, and 3 stuffed animals. That made MJ smile and feel a little better so thanks so much. Keep them coming as we wait to make sure that MJ tolerates a new antibiotic, that no infection develops, and that the hole closes shut!
Thursday morning:
Hi all:
I talked to the nurse. You can send anything to MJ here at the hospital except latex balloons.
Address is:
MJ will be in the hospital for a least a week longer. The hospital is
Dayton Children's
c/o Margaret Purk
ICU Room LM 278
One Children's Plaza
Dayton, Ohio 45404-1815
We are still waiting to head to radiology to get the PICC line. She will be on full TPN for a week and then work back to feeds, so we will be here for awhile longer. Thanks everyone!! We love and miss you all! PS, since we don't know what time radiology is, I won't head home, so my cell phone is dead (left my charger at the apartment).
Wednesday evening:
MJ has been admitted to Dayton Childrens Hospital, in the ICU. Her intestines are perforated and was feeding into her messentary. Because we stopped foods ASAP, there wasn't much that entered, so the plan is for us to wait and see if it heals by itself. Yesterday we didn't get to our room in ICU until 2am and had no cell service in ER. While in the ER, she had lots of tests done and they pulled the J tube back into the intestines and pushed it further down with no balloon. We are waiting to see if it heals. The surgeon wouldn't discuss further plans with us until Tim (dad) arrives since he didn't believe MJ was an adult!!! LOSER!! I am an the apartment picking up the mattress and computer and other stuff. Our cell works now and we have no idea how long we will be in the hospital. Thanks for all your prayers.
Wednesday afternoon
Just a quick update on MJ - she is currently in the ICU and fighting an intestinal infection and in a good amount of pain. Her white blood cell count was up but all other labs looked good. Her sats are good and her heart rate has come down since yesterday. She is on three antibotics. There has been some perforation in the intestinal area and have pulled her j-tube out and redirected it back to a better place. They didn't get any sleep last night as the move from the ER to the room was around 2:00am and then they were in and out all night taking blood for labs and such. MJs Dad arrived today around 12:00 so Brenda can run back to get the laptop and other supplies. Hopefully they can be online later today to post directly.
Friday, October 5, 2007 10:05 PM EST
Last night MJ's gauze around her g tube was covered with dry blood. I removed the gauze and something popped open and it started bleeding profusely. It wasn't granulation tissue
but almost like a little pocket of blood. It bled for about 20 minutes until it slowed and stopped. I changed her Gtube and got everything cleaned up and used Kenalog cream
on it. (Of course, after that she threw up her dinner). We are thinking it is cellulitis again.
She was tired all day but that is understandable. After throwing up all her dinner last night, she was fine all night. Her sats were good and only had minimal discharge this morning. The little pocket that had opened up around her gtube had scabbed over. It was only bleeding upon cleaning it. I called the doctor who didn't really seem concerned about the bleeding but somewhat concerned about the pain. She has pain surrounding the site but is already currently on Zithromax 3x/week. They were concerned that using Zithromax and Keflex would delay healing of the tract/site so we have to wait till Monday at least. Don't worry, if it gets worse this weekend, we are going to Urgent Care and won't wait around. We are having a quiet weekend so hopefully extra rest and a root beer float will help!! Thanks for all your thoughts and prayers. Not really sure what happened that caused the excess bleeding, but we will keep an eye on it!
Brenda 
Hi all:
Sorry for the lack of an update last week. What a busy week. I am in week 5 and midterms are here. I had a midterm on drugs and alcohol on Tuesday and have one in Biology on Friday. Never done.
So I didn’t update because I spent the weekend in Lexington visiting friends. We drove down in Friday (only hit traffic 10 miles from our destination and had to take a detour) and missed most of the traffic on the way home on Sunday. We had a great time hanging out with Dani, Beth, and Frank!! Thanks so much for inviting us down and showing us around town to all of Dani’s favorite places. We need to do that again soon!!
Classes are going okay. My medical terminology class is going good. Four tests down and I have only missed one question so far…just wish we could see which one we missed, but oh well! My Drugs and Alcohol class had the midterm Tuesday plus we had our journal logs due along with a 5 page opinion paper on binge drinking! Biology is okay. I have an A in lab class which is somewhat of a joke. They really haven’t prepared too well for those of us who are disabled, but we get the work done and have way too much fun! Decision making is half done and I have an A so far. It really isn’t too hard, just a lot of busy work!
Found out Monday, that I register for winter classes in 2 weeks. I am barely half done and have to start preparing for next quarter, which doesn’t start until January 7th (1 day before my birthday). I know I have to take Biology of Food and Rehabilitation Resources (3 hour class on Tuesday evening – YUCK!). Not sure what else I will take yet. I went to open advising hours today to see an advisor on what else to take. The lady I saw was no help. I showed her the sheet where Brenda had written down the 3 classes I was sure of. The advisor said “oh, you should take Rehab 202…” I said “I am going to”, she said “oh, you should take Abnormal Psych…” I said “I’m going to do that too”. We continued like this until she had said all the classes that I was going to take or aren’t offered in the Winter. I think I’m going to skip going to advising for now, Brenda does better than this lady! LOL I also have to get my flu shot scheduled. Remember everyone, it is time to get your flu shots scheduled!!!
Also for fan's of 'House' - Don't miss the upcoming episode Tuesday, October 9th.
SMA to be highlighted.
Tuesday, October 9, 9 p.m. EST the Fox TV series House will feature a storyline with a patient with SMA.
To add to the excitement, Executive Producer Garrett Lerner has organized a very special fundraiser for FSMA! The producers and cast of "House" will be holding a dinner on October 8th in Los Angeles. They have received a commitment from a website called www.tv.com to sponsor the event, and they will also be contributing $10,000 to Families of SMA in honor of the episode.
Lots of prayers going out. This autumn has been hard so far for so many kids. There are way too many kids that are sick already. Sophia D., Erinne W., Nick L., Emma S., Ryan B., Jenna B., Zoe G., Malorie F., Stella T., Eden F., TJ M. and Kaitlyn P. Prayers for my cousin Emma Elizabeth who just had her first open heart surgery. She is only 4 weeks old and has been hospitalized since birth. Please pray that this first surgery works so she can go home before her next surgery!
Saturday, September 22, 2007 12:57 AM CDT
Hi everyone:
I was hoping for an easier week this week, but you know me, life is never dull or boring. What a week is all I have to say.
We did meet the Wallace Family on Monday and again on Thursday. We had a great dinner and enjoyed meeting the whole family and did get to meet Hero Thursday! Watch a short video montage here --- http://www.onetruemedia.com/shared?p=3b9d01513f05aaece2a95e&skin_id=1705&pid=624&utm_source=otm&utm_medium=text_url
Wednesday I got inducted into the National Society of Collegiate Scholars. We didn’t stay long as some lady sounded like she was going to “hack a lung up” so we scooted out really quickly. Wednesday and Thursday were spent “running around”. All of our plans that we set up and our schedule was all messed up due to unforeseen circumstances. It seemed like we met ourselves coming and going at the same time. Friday was long but we did get a lot done. Angela and Dominic came by and worked on my vent to adjust the settings. I must say that after they left, I felt like I was more open and could feel a lot of plugs moving. Hopefully, it is the answer to my problems!!! It was great to see them again! We even did get laundry done, packages sent, and groceries and dinner from Qdoba. I have been busy doing websites this week along with my regular schoolwork.
Classes are going okay. My second bio term test was a 24/24 and my second writing assignment was a 10/10 for decision making class. My drugs and alcohol class is long and Brenda and I often have trouble staying awake. I am just glad that he is humorous. The topic of the week for 3 of my classes was sex. “It’s all about sex!” LOL!!! I have to take my med term test this weekend and for next week, I have another med term quiz, 2 papers for Decision making and that is about it. I am going to try to work on my Drugs and Alcohol paper this weekend since it is due October 2nd.
Just want to thank everyone who has already ordered their calendars. In a mere two weeks, there have already been over 40 calendars sold. I am so excited since the money will be going to two great organizations. If you lost the link, you can order yours now at http://www.cafepress.com/b4sma .
Please continue to pray for my cousin Emma. Her surgery was delayed to allow her to rest some more. Hopefully, she will have surgery this week.
Special prayers for Kaitlyn as she had her surgery this past week. Also prayers for Stella T who had to have another surgery to fix holes in her bowel due to the medical camera overheating. I hope both are able to get home soon. Prayers also going out for the families whose children were just diagnosed with SMA and any other condition.
MJ
Thought of the week:
Understanding
To understand is to love,
to look out upon the world and see there in
the human conflicts, the pain, the joys, sorrows, and agonies
in sensitive hearts who seek refuge and help,
who need a stronger power to guide their lives.
To understand is to have compassion on the multitudes,
to hate sin but not the sinner.
It is to know weakness, yet rise above it,
to see it in others, yet not condemn,
but uplift those hearts and encourage
them to go on to better things.
To understand – to truly understand is to suffer with others,
to desire to relive their pain and to take it on oneself,
it is to sympathize, to truly live and love
with a full heart made wide and full.
This is understanding.
This is love.
~Author unknown
Sunday, September 16, 2007 1:09 PM CDT
Hi everyone:
Another week gone by and it sure was a long one. Had way too much stuff going on and not enough free time. Sorry this update is really long but it was a long week.
Monday started off busy. Had class from 11am until 12, which is fine. My professor has a great sense of humor, so class goes by quickly. I did finally get my first quiz score back in Medical Terminology – got a 24/24!! Hooray. I did write my two papers for Decision Making and got a 10/10 and a 50/50! After class we ran over to MC Mobility to get the lift fixed. We thought we lost 1 screw while camping, but gee whiz, over the summer, we lost 3! After 90 minutes, the lift was fixed. After that we headed up the street to Children’s to get blood work done and a chest X-ray. I had a student taking my blood and what an idiot she was!!! She forgot to take the tourniquet off before taking the needle out of my finger and guess what happened? Yup, I bled all over myself, Brenda, and my tray. SIGH!!
Tuesday was a long day. I had my 6 month dentist checkup. I did learn something very interesting today. I knew that I was missing my two eye teeth on the top and come to find out, I am also missing my 12 year molar on the top right also. Brenda really scared me. I had Dr. Kyle this time and when he was done, he said that soon we will have to make an appointment with an oral surgeon to get some teeth removed. Brenda agreed with him and said okay, we will do that. I am sitting there, frozen and panicking, thinking that he wants it done soon. We get out to the van and I yelled at Brenda, panicking, and going nuts asking why she didn’t say “NO WAY!” Brenda laughed at me and said that he means in 6 months, we will talk about it then and it might not happen then. Six months ago, nothing was said, and maybe in another 6 months it might not be mentioned again. Brenda told me that when she was in 8th grade, the dentist said she needed her wisdom teeth out soon…well; she still doesn’t have them out. They kept deciding that they really didn’t need to come out, so there they wait. Hopefully, mine will be that way. It just baffles me, how I am missing 3 permanent teeth on the top, yet have no room for my wisdom teeth!?!? Explain that one! Anyway, after my dentist appointment, I had my Drugs and Alcohol class. We got our first paper topic and my final paper topic assigned. My first paper topic is my opinion on binge drinking and my final paper (10 pages) is about drug, alcohol, and tobacco ads in magazines. My teacher is way too funny. We ended up on the topic of sex way too often and were all laughing. Even though my teacher is funny, the class is way too long. The first 2.5 hours is okay, but that last hour sure drags!!! Brenda and I were both nodding off for a while!
Wednesday was yet another long day! Only had bio class, so that was good. Before class, I had my SHA meeting (Student Honors Association). It was really short but I talked to the board members about helping B4SMA make blankets and maybe helping at local events. They seemed very interested…time will tell! After class and a quick lunch, we headed over to get my new calf pads. They custom made me new ones because every time I elevated my feet, they would tend to fall off and down behind my foot plates. Now they don’t. We yelled at them to get busy with the rest of the work. I almost got hurt a few times this summer because my tires are bald and they had yet to start work on that, so they are going to go through insurance and get them ordered now. They are also going to order me a new lift, since my wheels are turning square and it doesn’t like to go forward. Hopefully, we will finally start on my manual chair! This was supposed to be ordered almost 2 years ago and here I sit waiting still!!!
Thursday was my “easy day”. No appointments after class!! Class was biology lab, and can you say “boring”. We were supposed to go to the campus bird blind and watch and count birds, but you have to be extra quiet while you walk on an unpaved path (two things there that don’t work for me…unpaved path and quiet. I have been using my vent and of course my feeding pump, not to mention my chair). So my section, the adaptive lab, we got to watch a video tape from years ago from the bird blind. UGH! Talk about an exciting movie, not! Don’t get me wrong, I love to watch the birds at my grandma’s house, but watching a video of birds that you can’t tell what kind they are is just boring! We did go to the grocery store and picked up 6 packages! Brenda came out carrying boxes up to her head! Mr. Bear is here before he heads out to his last stop before he is being raffled off. It has been almost 2 years since he started out on his trip and finally, he will be raffled off to some lucky family! Oh, guess what Brenda did Thursday night? She made me a cool pair of shoes. My friend Sara painted a pair of shoes this summer and I loved them. So, at the store we bought a pair of “generic” crocs and Brenda painted them. They are soooo cool!!
Friday was biology class again. After class we headed over to Children’s for my doctors’ appointments. My first appointment was at 1pm for an echo. It went well, hopefully we will get the results back soon! I almost fell asleep since they did it in a dark room with a television show about evolution, snooze city! LOL! My next appointment was with Dr. Mueller. They had changed the appointment from 2:30 until 2pm so I only had to wait for 15 minutes. The office went computerized so it took along time to get my info entered into the system. Anyway, my blood work was pretty much the same, my sodium and potassium were borderline low along with my Creatinine and nitrogen. My Xray was pretty much the same, just a different area that showed atelectasis. Game plan is status quo, pretty much. Talked about options and if we should worry. The biggest area of concern is that 3 to 4 times a week, I desat into the upper 70’s to low 80’s for long periods of time. Not really sure where the air is going at that time, but it isn’t into my lungs. Dr. Mueller ordered a sleep study (aren’t sure if we will do it or not) and to start back on Zithromax for 3 months. There has been a lot of promise shown with Zithromax on a 3 day a week schedule in reducing inflammation in chronically ill kids in staying healthier. We shall see! So, I am now taking Zithromax on Monday, Wednesday and Fridays. I get the weekends off for good behavior! LOL! Brenda and Dr. Mueller argued about metabolic issues and digestion along with quality care! Brenda gave him homework about metabolic issues for next time. I go back to see him in December. We didn’t leave the hospital until 4:30 and then rushed to the post office to send a blanket to a little girl in the UK. Traffic was dreadful as they closed half of the campus for a 5K run. We hit the post office and got home and quickly got delivery as we weren’t going to try to navigate around campus any more.
Saturday we actually got up early and went up to GJ’s. Before we headed there, we stopped to get my new drugs, send out Brenda’s sewing machine for repairs, go to my favorite place (Yutzy’s cheese house) and WalMart. I decided to add to my biology lab and sat and watched birds with GJ. She has so many more varieties at her house and you can sit inside with the window open and watch them and you don’t have to be quiet. LOL! Brenda and I also got haircuts. Zach cooked another delicious dinner for us! Today I am doing homework, how exciting.
Plans for this coming week are becoming hectic, but not as stressful. Monday we get to meet one of our B4SMA kids, Taylor. She is coming to Ohio to get her service dog and they are staying in a hotel in town. We are doing dinner at the mall! Wednesday evening, I am being inducted into the National Society of Collegiate Scholars. I hope to visit with Taylor and her family more later in the week too.
Please say prayers for my cousin Emma Elizabeth. She is having her first heart surgery Monday morning. She is having the Norwood Procedure done. Please keep her and my family in your prayers.
Also prayers for Kaitlyn who is having surgery on Tuesday. Prayers also for Stella T who is recovering from her surgery and prayers that the doctors continue to follow the SMA protocol so she can get home soon! Prayers also for any others who are sick or under the weather at this time. The weather keeps changing and so many of my little buddies are having a hard time already and it isn’t even winter yet.
Until next week, hugs and prayers for all.
MJ
Quotes of the week (I couldn’t pick just 1):
Like the elephant, we are unconscious of our own strength. When it comes to understanding the power we have to make a difference in our own lives, we might as well be asleep. If you want to make your dreams come true, wake up. Wake up to your own strength. Wake up to the role you play in your own destiny. Wake up to the power you have to choose what you think, do, and say. ~ Keith Ellis
When we react to life from the head without joining forces with the heart, it can lead us into childish, inelegant behavior that we don't respect in ourselves. If we get the head in sync with the heart first, we have the power of their teamwork working for us and we can make the changes we know we need to make. ~ Doc Childre and Howard Martin
So many people walk around with a meaningless life. They seem half-asleep, even when they're busy doing things they think are important. This is because they're chasing the wrong things. The way you get meaning into your life is to devote yourself to loving others, devote yourself to your community around you, and devote yourself to creating something that gives you purpose and meaning. ~ Morrie Schwartz, in "Tuesdays with Morrie" by Mitch Albom
Learn to get in touch with silence within yourself, and know that everything in this life has purpose. There are no mistakes, no coincidences, all events are blessings given to us to learn from. ~ Elizabeth Kubler-Ross
Saturday, September 8, 2007 2:52 PM CDT
Hi Everyone:
I have survived the first week of classes. One down and 9 more to go, LOL!!
Classes will be okay. Day 1, Tuesday started off interestingly enough. My drugs and alcohol class will be okay, not too bad. We have 2 tests, 2 papers, and big project along with a weekly writing log. After class was over, we went to run errands and get stuff done at the union, but we were not allowed in. There was a bomb threat so the Union was closed. Luckily, it was just a threat and no bomb was found. What an interesting start of the year.
My biology class is good. The professor is pretty funny. We have two tests and they last 2 days each. The second day of the test lets you work with other students – so group test. Can’t beat that. Lab portion should be interesting. Our GA was pretty nervous about teaching the disabled lab and hadn’t really thought it out ahead of time. There are only 5 of us, so hopefully, we can get done and out of there early each time!!
My Medical Terminology class is good. We have a quiz every week that goes over 2 chapters. Not too bad. Each quiz is 24 questions and you get 12 minutes to take it. I was worried about the time limit but I finished my first quiz in 6 minutes. Each quiz is almost like the study CD, so that is good to know!!
My other online class is Decision Making. It isn’t really what I expected or heard…can’t quite figure out why everyone loves it. It doesn’t seem to terribly difficult, just a lot of busy work. We read and write responses to different theories and styles of decision making. We also write 3 papers and do a power point presentation. I will survive.
Next week will be a busy week for appointments. I have something going on every day except for Thursday. Monday I am going to get the lift fixed in the van. While camping this summer, we lost a screw and are going to get it fixed. I will also go for blood work and a chest X-ray for my doctor’s appointment. Tuesday, I have a dentist appointment before my long marathon class. Wednesday, I am going to get my wheelchair worked on. I am getting new calf pads custom made so my legs will stay on the footplates. We are also going to raise heck about my manual chair not being ordered as of yet and also about my new tires. My wheels are bald and I almost hurt myself a few times this summer due to no traction. We are also going to try to get my lift fixed or get a new one ASAP. I use the lift to get from bed to chair and chair to bed…but the lift won’t go forward. The wheels get stuck on the lift! UGH! Then finally, on Friday, I have 2 doctor’s appointments. First, I am having an echo done of my heart to do a baseline check and then I have my Dr. Mueller appointment. The good news is that last week I took in a sputum sample, and got the results yesterday! I no longer have active pseudomonas!! Hurray!!
I think that is all. Prayers please for Emma Elizabeth. She is doing a little better and seems to have stabilized some. I will add an update later when I hear more. Her echo (scan of the heart) came back Wednesday evening showing "very slight improvement" which was good. The doctors were quick to remind everyone that this by no means gives any indication that the left side of the heart will completely repair itself, its just too early to tell. But that it does show that Emma is moving in the right direction. Emma will have an echo every other day and hope that improvements continue to show. Decisions about surgery will be made in the next 5 to 7 days depending on how the next several echos go.
Prayers also for Kaitlyn P, who is still hospitalized. We pray that they can get it all together and get her surgery and extubated soon. Special prayers for Julia K, who was just released from the hospital last night, for pneumonia and a broken arm. Prayers for my special buddy, Casey O, who broke his leg the other day. Special prayers going out for all of the other SMA kids who are under the weather and fighting colds already.
Also, one last thing, it is time to start shopping for the holidays. There are only 107 days left to get your shopping done. To help you start your shopping, this years SMA Family calendar is ready to be purchased. This year’s calendar will benefit Marshall’s Miles and SMA Support. Please take a moment and look around the shop and make sure to buy a calendar to help support children with SMA. https://www.cafepress.com/b4sma/1826918
Until next week, take care!
MJ
Quote of the week:
“Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think. “ ~ A.A. Milne
Monday, September 3, 2007 3:23 PM CDT
Hi everyone:
Sorry for the delay in writing and updating but have been busy getting back into the swing of things and getting organized. I start classes tomorrow.
Anyway, the last of my vacation was great! Brenda’s mom, from Iowa, flew out and spent a few days with us at GJ’s house. We had a blast going through fabric and cross stitch projects. Her traveling was a disaster due to all the rain in Minnesota and Wisconsin, but she made it here and back home after many delays. Thanks Janis for coming out and spending time with us.
We also met up with Leah and Nikki again and had a lot of fun. Janis and GJ went with us as we met up at Young’s for ice cream. GJ ordered strawberry shortcake and boy was it ever huge!! LOL!
We moved back Saturday and I worked on emails and doing websites while Brenda put stuff away.
So, classes start tomorrow. Haven’t decided if I’m ready or not, but it does start tomorrow, so I better be ready! I have one class a day (on campus) and 2 online classes. (Have I ever told you that I LOVE online classes!!!). Anyway, tomorrow, I have my Drugs and Alcohol class from 12:20 until 3:50 (every Tuesday). It will be my longest day, sitting in class for 3.5 hrs. Monday, Wednesday and Friday I have Biodiversity lecture from 11am until 11:50am. Not bad. I like being done early on Friday’s so I can do whatever need to do after class. Thursday’s, I have biodiversity Lab from 2:15 until 4:05 (although it rarely takes that long, since I am in the adapted lab). My two online classes are Honors Decision Making (have no idea what I’m in for on that one yet) and Medical Terminology. We only meet once on campus and that is for the final.
Well that is all about me.
First of all, I have a new cousin that was born on August 31st. Her name is Emma Elizabeth and is on my mom’s side of the family. My Aunt Vicki (my mom’s sister) and Uncle John were very excited for her arrival and maybe cousin Henry is excited too.! Emma Elizabeth was born with one side of her heart not working. One of her heart valves was scarred shut and not working. She had an angioplasty to get it opened up to try to delay reconstruction since she is so young to a later date. I will keep everyone updated on her progress. I would appreciate any prayers that you can.
Also please say prayers for all the SMA kids that are already under the weather. Please say prayers for Kaitlyn H as she is in the hospital. Also prayers for Emily L and Julia K as they are battling colds already as well as Isaac P who is feeling fine but battling something at this time. Prayers to Aiden B who was just released from the hospital after getting his G-tube. Also prayers to all the new families and to anyone else that I have missed.
Here is a link to some pictures from the summer, in no particular order:
http://www.kodakgallery.com/I.jsp?c=a1z30nd.2t0bk0ip&x=0&y=-92jlq7
Until next week.
MJ
Quotes of the week:
“There is one thing one has to have: either a soul that is cheerful by nature, or a soul made cheerful by work, art, and knowledge.” By: Friedrich Nietzsche
“Knowing others is wisdom: knowing yourself is enlightenment.” By: Lao Tzu
Wednesday, August 22, 2007 9:38 AM CDT
Hi everyone:
Sorry it has been a while since my last update, but, you know me, always busy!
This time it was our annual camping adventure. Always an adventure as you know!!
Thursday, we left early to send out two more blankets (now up to 423 blankets) and then met up with Aunt MeMe for lunch. We went to Lenny and Joe's Fish Tale in Madison. I had a cheeseburger and fries. After lunch we headed to camp. We met up with Peg, who came camping with us to cause trouble! Armand and Debby and their new addition, Angel, arrived and set up too. We unloaded everything and tried to get organized when the unthinkable happened. Brenda realized that for the first time ever, she forgot my sling for my lift. If you didn't know, that is how I get into and out of my chair. I called dad, who said he was going to bring it up after work. MeMe offered to meet dad halfway. After we got that figured out, we headed for dinner at Papa Gino's. We, of course, caused trouble, like we always do, and had lots of laughs. After dinner, MeMe headed to meet dad to get my lift, Armand and Debby went to the grocery store, while Peg, Brenda, and I headed to Joann's Fabrics and found material for three blankets. We then went to get groceries too before heading back to camp! Upon arriving back at camp, the lip on the van lift broke (lost a screw), but we were still able to get the lift to go flat. MeMe arrived back at camp with my sling at the same time so that was good.
Friday, we were slow to get moving. We ate breakfast at the cabins and told Armand that we needed a picnic table, who quickly went and had one delivered in 15 minutes or less!! We finally got ready to walk to the beach when Shaun and Lynne arrived. We all met up at the beach for an afternoon of fun. We hung out and walked the area while Peg attempted to conquer the slide again. Peg attempted to ride the beach chair with me pushing her. The wheels were a tad flat, so I couldn't get her going very well, however she did ride the grass down a small hill for fun! We had trouble trying to stop laughing! No one wanted to cook dinner so we headed back to Papa Gino's again for dinner! We laughed and laughed during dinner, once again causing trouble. We aren't sure if we are such a scary bunch or smell bad, but we usually clear out the restaurant while we are there! LOL! While eating, the Miller's from MA arrived. Dena, Eric and Joseph fit right in and we kept on laughing. The Miller's and Peg went for groceries while everyone headed back. I headed back because my chair was loosing power, since I used my vent. That night, it got very cold and we all woke up cold Saturday morning.
Saturday morning was colder than normal but the sun felt good. We ate breakfast at the cabins before heading down to the beach. Everyone enjoyed our annual gift to camp, cheese poops! We also brought many flavors of chips, cucumbers, gold fish and all that other good stuff. We went over to the playground and played, and went to the overlook and had fun. It got a little hot, so when Joey took a nap, I went to our cabin and pulled pictures off while Brenda made 2 blankets. Yes, we head to camp and Brenda makes blankets. We also gave a new big boy blanket to Joseph. He was one of our first kids 3 years ago, so he definitely outgrew his blanket. We then headed back to the beach for dinner after Brenda brought out the pop it’s for Shaun, Joey and I. Brenda sprinkled the pop its all over the ground while we went crazy driving back and forth over them. We had burgers and hot dogs on the grill. It was delicious. Peg, of course, had to cause trouble! What would camp be without Peg having fun? This year she took the wagon and rode it down the hill toward the beach. Thank goodness Eric was able to stop her before she catapulted herself headfirst into the sand. However, once the sun went down, we all froze!! We all needed our blankets and coats on to stay warm. We did S'Mores on a campfire and laughed some more! LOL!
Sunday morning, we all got up early for breakfast at the cabins before heading down to the beach for the picnic. Brenda and I walked down to the beach with Joey, and picked up seeds along the way. Joey had to stop and find seeds and collect them and put them in Brenda's pocket. Brenda had so many seeds that her shorts were getting weighed down. Hee Hee!! A lot of families showed up for the annual CTFSMA picnic. We had a great time. We met some new families and had a great time overall. Armand, Debby, and angel left after dinner as did Peg and the Miller's. We hung out at the beach for a while until we got cold again. Brenda and I along with MeMe, Lynne, and Shaun headed up and hung out at the gazebo until we all were tired.
Monday morning we got up and packed to go home. MeMe brought out bubble wrap for Shaun and I. It was a good thing that most of the cabins were empty otherwise we would have woken everyone up with our loud pops. Brenda brought out the rest of the pop its and we popped those quickly! After getting everything loaded up and the cabin cleaned, we headed to the beach. It was rather chilly. We took pictures and I called GJ so she could "hear" the waves, but the wind was so strong that all she could hear was the wind! Bummer! Lynne and Shaun attempted to fly the purple cow but it didn't go very well, so we headed to lunch at Joe and Lenny's. I just had fries before we headed home. Brenda forgot to charge my chair and it died, so Brenda had to push me! We got home at 5pm so Brenda unpacked and packed the van at the same time. She would bring in a load and take out another load.
Tuesday morning, we got up early and packed up the rest of our stuff. We left New York, in the rain at 11:15 but had to stop a few times because my food pump kept alarming. We did, however arrive in Somerset, PA at 5pm. Brenda unloaded the van during pouring down rain. We called out for Frank's as neither of us wanted to go back out. I worked on websites while we ate dinner. I am caught up on most websites.
Today, we are driving to Ohio to stay at GJ's until Sept. 1st! Brenda's mom, Janis is coming for a visit Thursday, so I'm sure we will have lots of fun. I will be off line most of the time until September so if you need me, give us a call on our cell.
Prayers are heading out to Kaitlyn, Lizzy, and Kaiden along with anyone else I forgot.
We had a great week at camp and can't wait until next year. It was a week I will never forget. I was amazed that I didn't get the hiccups at all from all the laughing I did. See everyone next year!
Video montage to come!
Quote for today:
The smell of pine trees, the campfire glowing, the marshmallows cooking, and the breath of crisp cool air are some great things I like about camping but my favorite one of all is camping underneath the stars with lights so brilliant it brightens up the deep blue sky making you feel a sense of peace and tranquility amid the great outdoors.
-- Author Unknown
Wednesday, August 8, 2007 6:21 PM CDT
Hi Everyone,
Sorry for not updating sooner but we were just having “too much fun” in Massachusetts to write an update! We truly enjoyed our vacation in Massachusetts, although silly Peg had the nerve not to be there any of the 11 days! I have to thank the Reilly family for an amazing and relaxing time. Now we’re back to the same old, same old. *sigh*
There is so much to tell, although I doubt I’ll be able to remember all the wonderful things that happened. Sunday, July 29th, we traveled to the Marshall’s Miles Bike Run: Ride Away SMA. It was literally in the boonies, we traveled on many roads that seemed like poorly paved dirt roads. The Farm road loosened up tons of junk in everyone’s chests…LOL It was hot but lots of fun to see old friends and meet new ones. Laurie, Mark and the rest of the Marshall’s Miles crew put on a fantastic fundraiser that was enjoyed by everyone. I think the highlights, at least for me, included meeting the White family and their adorable sons, getting to know Nancy B. better, and watching Tim and Owen in the dunk tank! It was also lots of fun to watch Connor enjoy the flashing icicle lights. We headed back to Reilly’s full of Cape Cod chips, yummy cookies, and Karen’s chicken salad sandwiches.
Tuesday, August 1st, we headed to the boonies again and visited the Marshall’s Memorial Garden. It was worth it. The garden was absolutely beautiful. It was so serene and wonderful and what a tribute to such a loved little boy. I loved all the dragonfly tributes in the garden along with the stone candle holders. We had brought a memorial plaque for the garden, so Connor and I had our picture taken with it along with Mark and Laurie. Murphy was adorable as usual. She is so funny and so innocent at the same time. It was great to visit with Mark and Laurie and their parents.
The rest of the week we mostly hung out and helped Karen clean out supplies, get new stuff ordered for her and Connor and just relaxed. I did get a lot of website work done and had a great time talking to Tim and Owen, playing with Connor and getting to know Nurse Jennifer. We had a great time and couldn’t stop laughing most of the time. Jennifer is too funny and kept us entertained. I also got the 2008 SMA calendar just about finished and am now waiting for Café Press to allow me to put it up online.
Sunday, another new family came to visit us. They have the cutest little boy, Dahrian, who is 8 months old. They asked lots of questions and asked about the drug trials and such. I sent lots of links and info to mom, Heylane after they left. We had a great visit with them and I got to hold Dahrian. Brenda helped fit Dahrian in a Kid Kart that they had gotten donated. We hope to hear from them again and visit with them again. They are off to see Dr. Bach next week and going to see Dr. Wang in September.
Monday, we were supposed to head back to NY but decided to stay an extra day and go visit the Evans on Cape Cod. We didn’t get to visit long with Cassie since she was tired and I’m allergic to cats, so we stayed out on the porch and talked to Henry. Henry also gave me a copy of his book that he wrote about SMA and I can’t wait to read it (thanks Henry). It was great to see their house and Cassie’s new bedroom and bathroom is absolutely wonderful! Thanks for inviting us!
Tuesday we had to say our “see-ya-laters!” to the Reilly’s. We had such a great time with you all and it was great to just relax and to not “have” to do anything. Thanks for the high speed so I could keep up with my work. We had such a great time laughing and dancing and joking around.
A Video Montage can be seen @
http://www.onetruemedia.com/shared?p=34a77d8df500c676203681&skin_id=1704&pid=624&utm_source=otm&utm_medium=text_url
Today, we went out and sent out 6 blankets. I guess I should have taken blankets with me to send out so I didn’t get so backed up but all the blankets did go out today. I also dropped off another sputum sample to check to see if I still have pseudomonas (I’m guessing I still do based on the stuff I coughed out) and hit the grocery store. It was too dang hot out and didn’t want to stay out any longer.
Tomorrow we are off to see Ethan and then Saturday, we are going to Danbury to visit with a friend of mine, Lauren, and go out to dinner. Next Thursday we are off to our yearly trip to Camp Harkness (just hoping it is cooler than this week). Until next time, big hugs!!
Quote for today:
The purpose of life is to live it, to taste experience to the utmost, to reach out eagerly and without fear for newer and richer experience.
Eleanor Roosevelt
Tuesday, July 24, 2007 6:00 PM CDT
Hi everyone:
Sorry that I did not get an update out over the weekend, but I was catching up on emails in the hotel and enjoying high speed for the last time for the summer.
Anyway, I am doing okay. Still coughing up stuff and having more bronchospasms but am surviving!
I had a good week at GJ’s. Time went by too fast and I had a great week off and got my hair cut and dyed. I did get to deliver a Cole’s Quilt to Leah and was excited to help out my friends deliver it. I enjoyed seeing Nikki and Leah again and meeting Leah’s nurse. I also got my new footplate, it was a good thing, since it completely broke! I did not go to the screening of the movie I was in…I found out that they were only showing a trailer (2 minutes) and the presentation ended up being 2.5 hrs followed by the 2 minute clip. Glad I didn’t have to go sit and not see the movie. Brenda made blankets at GJ’s but we figured we would just leave them there and bring home 6 blankets for New York…only problem so far, is that since Saturday, we have gotten 3 new blanket requests (sent out 1 Monday and 2 today).
Pics: http://www.kodakgallery.com/I.jsp?c=a1z30nd.bwbxqbv5&x=0&y=y4tzp7
Yesterday, I had my appointment with Dr. Bach. Let me just say one word here, “impossible”. I wore my shirt that says, “I’m not trying to be difficult, it just comes naturally” but Dr. Bach said it should say, “Why be difficult, when with a little bit more effort, you can be downright impossible!!” LOL!! Not really sure what is happening at night with my desatting except that I have an upper airway obstruction and that I’m being impossible! Brenda did fix me by accident the other night. During the day, I turn the sensitivity off on my vent, so it doesn’t alarm on me if I don’t take a breath and at night forgot to turn it back on, so I can trigger a breath as needed. So, instead of dropping to 62, I only dropped to 84. Last night when we got back, I had a bad night with many bronchospasms. UGH, did I ever tell you that I HATE it when it happens, scares me everytime. I am awake and alert and cannot take a breath in or out and cannot make a noise to alert someone for help.
Today, we went to Starbucks to steal some WiFi and hopefully do some website work. Sadly, they charge for WiFi so we quickly split and headed back to the house and dial up. Wednesday I go see Dr. Proskin. Saturday we are off to Marshall’s Miles Fundraiser. Can’t wait to see everyone! Hope everyone is enjoying their summer and the weather.
Quote for Today:
Hope is a waking dream. ~ Aristotle
Friday, July 13, 2007 7:27 PM CDT
Hi everyone:
Happy Friday the 13th to you, hope it was a good day and not bad or unlucky!
I am officially done with summer school (shouting hooray) and am off for the rest of the summer. It didn’t turn out to be as bad as I thought. The last 10 days I spent more time doing website updates than actually school work. I believe I got all A’s in my classes. My speech class I got a 113 out of 100 total points! LOL!!! My music class went well too, I had 4 tests and got a 94, 96, 100 and 100’s on them. My culture class had 3 tests and I got all 90’s in that class too. It wasn’t bad at all, but I’m sure glad that I’m done. I was ready for vacation!!
I had my follow-up with Dr. Mueller today. Lucky or unlucky me! LOL! It wasn’t that bad. A month ago, my sputum culture tested positive for a bacteria, stenotrophomonas maltophilia, and I was placed on Levaquin for 2 weeks. Guess what, I should not have taken Levaquin so I am now on Bactrim for 2 weeks. This has become my antibiotic summer. SIGH!! I still have atelectasis in my left lower lobe and it isn’t coming out. I did wear my new shirt for Dr Mueller that I made, it says, “I’m not trying to be difficult, it just comes naturally!” Dr. Mueller wants to do a broncoscopy but I certainly do not want to – that means intubation. I do go see Dr. Bach on July 23rd so we will be certain to discuss this issue. I also have to have an EKG this summer and then an echocardiogram when I come back in September since I was having issues with meds and my heart rate…just to be safe!
Anyway, my summer is going to be busy. I will be trying to use every moment to have fun. Sunday I am off to GJ’s for a week to chill out and relax, or try to as we have made many plans. Tuesday Brenda and I get to do something really special. We get to hand deliver a Cole’s Quilt to a friend of ours. Our friend Leah, who we spent the weekend with in Cincinnati is getting her special quilt and we get to take it to her. Also on Friday, they are premiering our video that I participated in, is being shown on campus. I can’t wait to see how it turned out and before you ask, I will try to get a copy of it so I can share it with everyone!! LOL!!
So my busy schedule is GJ’s next week, drive home to NY on the 21st and 22nd; go see Dr. Bach on the 23rd, Dr. Proskin sometime that week also. On July 28th to August 6th, we are off to spend the week with good friends, then spend time at home (mostly going to Starbucks so I can work on websites if possible since I can’t do it at home) and then go camping at Harkness the 16th to the 20th of August. The 21st and 22nd of August we are driving back to Ohio and Brenda’s mom is flying out to Ohio to spend a few days with us! We are excited. I will probably spend time at GJ’s before moving back to campus. Classes start on September 4th. I am not sure how much time I will have online this next month as my computer doesn’t have dial up capabilities and I will only be online if I can get some wireless signal at home or go to Starbucks. That is about all for now. If you need to get ahold of me, give me a call, we will have our cell phones on all month. Big hugs to everyone and hope you all have a great rest of the summer.
Prayers for all my friends who need them, especially my friends with cancer. They are all having a rough time right now and could use the prayers and good thoughts. Also prayers for my SMA friends.
Quote for the next while:
It is good to have an end to journey towards; but it is the journey that matters in the end. ~ Ursula K. Le Guin
Tuesday, July 3, 2007 5:41 PM CDT
Hi everyone:
It is hard to believe it is already July. Where has the time gone. I have 10 days left of class and then I am done until September 4th. I have 3 tests and 1 paper left. I am supposed to be taking a test right now, but the teacher hasn’t put up the test yet, pretty sad isn’t it!!
Classes are going well. I have an A right now in all 3 classes. My speech last week about Quality of Life and SMA went wonderfully. I figured she would take off points for eye contact and not strong enough points but I got a 20/20. I was soooo shocked and happy. My second CST test, I got a 92, but questioned the professor on a question and he gave me the points so I got a 94. It bugged me because I knew the answer was correct but he was looking for a different answer, even though the answer I put was correct. I hate it when teachers put more than one correct answer in a multiple choice test…like how are we to know which answer you want!?!? My last music test I did not think I did well, but actually got 100. I guessed on many of the true false questions and I guessed well, I guess! LOL!!
Tomorrow I am going to GJ’s house to celebrate my cousin Peter’s birthday. I might stay to watch the fireworks but I am not sure since I am worn out this week. I had the most wonderful weekend. I went to visit with some of my SMA Friends and we had an awesome time. I got to spend time with a lot of my friends from online and we hung out and had an awesome time. I can’t wait to do it again next year!! To view the pictures, please visit here: http://www1.snapfish.com/share/p=72431183477698418/l=257386128/g=5758299/cobrandOid=1000131/otsc=SYE/otsi=SALB
Please say prayers for my little buddy Logan who is in the hospital again. He has been having a hard summer. Please say some prayers for Angel Maddieann’s family. She was one of our B4SMA kid’s and she was 8 months old when she lost her fight with SMA. Also prayers for John, who is in the hospital, who also has SMA and is only 8 months old.
MJ
Quote of the Day:
Fill your life with as many moments and experiences of joy and passion as you humanly can. Start with one experience and build on it. ~ Marcia Wieder
Sunday, June 24, 2007 8:58 PM CDT
Another week has gone by and I am less stressed than last week, which is a good thing. I spent the week working like a fiend and am glad to say, I only have 20 chapters left to read. I am pretty much ahead of schedule in my classes and after this week, will be pretty much done with my speech class! :o)
My speech class has been pretty good with a few road bumps along the way. Wednesday I did my first speech, I was the only one so far to brave the impromptu speech and it was fine. I picked a number from 1 to 20 and had to talk about My Favorite TV show. I got a point taken off because I forgot to summarize what I talked about, only because I forgot what my favorite shows were when I got done talking. OOPS!! My speech about SMA was fine but a little stressful. The speech was held in a room that was not accessible, so I sat at the top of the stairs and talked down to people. Unfortunately, I couldn’t see half of the class and some didn’t turn around to look at me. SIGH!!! This Wednesday, is my last speech, which I am doing it on the Quality of Life and SMA. Wish me luck! After the speech, I just have to write my final paper and then I’m done!!!
Music class is going well. I got a 96 on my first test. It wasn’t too bad. Can someone define what “tone color” is? Can’t find it in my book and have no clue what it is???? Thanks. I have test 2 on Wednesday. I am actually finished with my topic replies already. The professor posts 2 to 3 discussion questions per chapter (we are done with 10 now) and you have to reply to 10 different questions to NOT get points taken off. As of tonight, I have answered 10 questions already! One less thing to do!!! I have 15 chapters left to read in 3 weeks and most of the chapters are only 8 to 10 pages long!
My Comparative Studies class is hard but I am doing okay. I took my first test on Thursday and it was pretty hard. Some of the questions were way out there. I got a 90 on it and am very happy with that. The average was an 81 so I did fine. I am going to try to take my 2nd test this Thursday. I also wrote my 2nd essay this weekend and 2nd reply, so if the teacher okay’s them, I am done with the writing portion of the class. If I get the test done this week, I will only have one more test left to do in this class. I have 5 chapters left to read in 3 weeks. Two chapters before my next test and then 3 for the last test.
Let’s see, my health is next. Knocking on wood, really loudly here, so as not to jinx myself….but I am doing better. I am off oxygen, finally. I de-sat a few times during the night when a plug moves, but I don’t stay down for long periods of time…maybe only 5 minutes at the most. Last night I went to 78, but usually down to 82, which is much better than before. I am on Levaquin which I had to split into 2 doses, as the regular dose makes me want to puke!! With a little bit of Zofran with the Levaquin, I am able to function and not feel sick. Apria has been a pain, like usual. I had Apria when I first started on Bach’s protocol and they were a nightmare. Dr. Mueller had ordered a percussor for me to help get the junk out of my trunk and called Apria, here in Ohio, and I must say, “They are a bunch of idiots!!!!!” First of all, they didn’t call my insurance until Sherry called a week later and asked what was going on. Last Friday, they showed up with the wrong machine. DUH!!! After convincing the therapist that the IPV was not the same thing as a manual percussor, she left and went and ordered me the percussor. Monday, they called to set up an appointment and wanted to know my height and weight. Brenda told them and then asked if she was for sure, because the dippy therapist who was here ordered a neo-percussor (one for a newborn child). So, finally, after Brenda started yelling at them, getting Dr. Mueller and staff involved, and hanging up on them, I finally got it. SIGH!! We got tired of waiting and went and bought one at Wal-Mart that works better than the one they delivered. LOL!
Thursday, my friend Peg is coming to visit. I can’t wait!!! Then on Friday we are going to Cincinnati for the weekend to have fun with my friends. Peg is coming to stay with us and meet my Ohio area friends. I hope the weather is great and not too hot. We are going to the Aquarium and just hanging out and having fun all weekend.
I hope everyone is having a relaxing summer and staying cool. It has been pretty warm here and very dry. Only 3 more weeks left until my vacation starts! Hugs and prayers for everyone!!
MJ
Quote of the week:
Whatever you can do or Dream you CAN, Begin it!
Boldness has Genius, Power, and Magic in it! ~Goethe~
Saturday, June 16, 2007 9:53 PM CDT
MJ Update - Families are like fudge - mostly sweet with a few nuts
Hello everyone:
Summer session has started and I have survived the first week of classes. One week down and 4 to go! LOL! What a busy week I had with lots of reading involved. My music class has 25 chapters to read in 5 weeks, my History across Cultures has 10 very loooonnng chapters to read, and my Communications class has about 20 different chapters to read. I spend a lot of my day listening to my books.
Next week I have to give my first two speeches and have two tests plus 2 papers to write. My first speech is an impromptu speech and the second one is informative. I am going to inform my class about SMA and what it is! No surprise, huh! There is a lot of work involved in my classes and it is really pushing me to keep ahead or on schedule, but I am trying my hardest.
On a positive note, I got my grades back this week! I was so shocked that I almost quit breathing!! I got an A in all 4 of my classes. I knew I had an A in three of my classes, but wasn’t sure about my English class that was graded on the amount or number of corrections you made on your papers. Not quality but quantity. On Thursday, when I signed on to check, I was almost dreading looking but was extremely shocked to see an A next to my English class. I now have a 3.904 grade point average after earning 42 hours!
My health is okay. I am almost afraid to say that I am feeling better…but shhhhhh, you didn’t hear that from me! My first sputum sample came back negative and did not grow anything out of the ordinary. My wrist feels a little better and it doesn’t hurt if I don’t move it…sound familiar??? I wear my hand splint at night but can’t wear it during the day since if I wear it while I am up in my chair, I become completely immobile! I think I have to start another antibiotic again. My culture came back growing something and I guess I should start on it on Monday, it is up to Brenda (not the doctor, why, we don’t know).
Today we went to the Purk Party at GJ’s house. It was hot but luckily there was a slight breeze. I was very tired but stayed for the afternoon and it was good to see my aunts and uncles again. It was the first time in 10 years that all of my grandma’s kids were all together so we took pictures of them. We laughed way too much and also ate too much! To view the pictures please click here to see them…
http://www.onetruemedia.com/otm_site/view_shared?p=2f37e1c98a9894bbbd2675&pid=624&utm_source=otm&utm_medium=email
I know that they aren’t the best quality but Kodak wasn’t letting me upload and I was able to through One True Media easily.
That is all for now, I think. Most of the family heads home tomorrow, so prayers for safe travels for my family. Also safe travels to my SMA Friends who are heading this week to the Annual Conference in Chicago. Happy early Father’s day to all the fathers out there.
MJ
Quote for the Week:
The family. We were a strange little band of characters trudging through life sharing diseases and toothpaste, coveting one another's desserts, hiding shampoo, borrowing money, locking each other out of our rooms, inflicting pain and kissing to heal it in the same instant, loving, laughing, defending, and trying to figure out the common thread that bound us all together. ~Erma Bombeck
Monday, June 10, 2007 7:10 PM CDT
MJ Update: Good News…???
The good news is that my wrist/hand is not broken. The bad news is that I have no clue what I did!! Last night after I fell asleep, I woke up because my right wrist was killing me. Brenda didn’t see any swelling or anything so she put my hand splint on and I fell back asleep. This morning I woke up and it was feeling a little better. So I went about my day. Did some online class work, went to the Union to get my book for class, mailed out boxes (can you believe it is June 11th and today we sent out our 11th blanket since June 1st, already!!! That is too many this month and we also hit number 400!!!), and went to drop off lab work at the hospital. While at Meijers mailing packages, I told Brenda that my wrist was starting to hurt a lot. My wrist was swollen and had a lovely tinge of green to it (no Shelle and Logan, I haven’t been kissing Shrek lately ;o) ). Since we were headed to the hospital, we just had Dr. Mueller call in for an Xray too. We must say, that the last 3 xrays have all been done by a wonderful lady named April. She hasn’t complained about me not transferring and has worked with us and we give her two thumbs up!!! So, anyway….my xray was negative and I didn’t break it, now if only I could remember what I did to it to begin with…LOL.
Anyway, since I’m updating…my classes started today. In Communication/Public Speaking, I have to give 3 speeches and write 2 reviews about my last two speeches. I have one scheduled for the 20th, the 21st, and the 27th and then I’m done with that class. My Music class, I have 4 tests and that is it. They happen every Wednesday, except this Wednesday. 50 multiple choice, true/false, or matching questions. My Comparative Western Culture Class had 3 tests, 2 small papers and 2 papers that are 2 pages each. Not too bad. I have to read 25 chapters in my music book, 10 chapters in my comparative culture book, and a bunch of chapters in my communication book. If you email or IM me, don’t worry if I don’t answer right away…I’m not ignoring you, I am probably listening to my book, taking my test online, or studying.
Well, that is all for today. Just a little too exciting for my tastes I think!
Prayers heading out for Owen C and Alyssa K who are in the hospital and also to my friends Jacob G, Logan H, Vivianna M, and TJ who were just released from the hospital and for Madison R, Julia K, and Zoe G who are still under the weather. Big prayers heading your way.
Hello everyone:
Spring quarter is over and a lovely two day break before summer session starts. I have been done since Tuesday morning, but have been pretty busy since then.
Last weekend, we hung out and I studied and relaxed and coughed and coughed. Brenda sewed labels on the wonderful donations we received for B4SMA and cleaned stuff up around the apartment.
Monday, I ran errands and studied for my test in Rehab which was on Tuesday. I went to sell back my books from the quarter and boy was I upset. I spent 145 dollars and got back a whopping 13. My history book, which was 105 dollars was no longer going to be used and they could give me 5 measly dollars. Ugh, how frustrating. Tuesday I had my test in Rehab. I think I did okay, because I ended up with an A in the class.
Wednesday Brenda and I went up to GJ’s. My cousin Kendra and her son Levi were there (from North Carolina) visiting. We were running slow but did get to visit with them and went out to eat at the airport. It was delicious, of course. Yesterday, I went to Children’s for another chest x-ray for my appointment today.
My appointment today was interesting. Let’s see, where to start…Dr. Mueller was running behind so I met with Dr. Stark. I warned him that Dr. Fink says that I am challenging and after a few minutes he agreed. Mueller came in to check up and they looked at my X-ray. My x-ray is no different. I still have junk in my trunk – lower left lobe, still!! My sats are still crappy at night with 1.5 L of oxygen and my heart rate has been elevated again, up to 140 last night. I’m still coughing up a variety of colors of mucus. So anyway, Dr. Stark and Mueller both agreed to a variety of steps to use. I coughed up junk for them and they are culturing it and see where that brings us. Tonight I have to increase my pulmozyme to twice a day for two weeks. If my lung hasn’t cleared up then they will add the rotten egg Mucomyst to my daily regimen. I then see them when summer quarter is over – 5 weeks – and if my lung hasn’t opened up yet, then I will be admitted to the hospital for bug juice, ie…IV antibiotics. I also have to stay on the 3 day a week antibiotic regimen until I am cleared out.
Anyway, Monday morning I start summer classes. I am taking Music, Comparative Studies – Music and Public Speaking. We do 10 weeks of work in 5 weeks, so I suppose I will be working hard the next five weeks and will be busy and not around much. At least my classes are online so if it is super hot outside, I do not have to leave. I hopefully will be able to rest and get better.
I hope everyone has a great weekend. Prayers for all of my friends who are sick or in the hospital: Logan H, Jacob G, Alyssa K, Vivianna M, Madison R, and TJ! Hope everyone had a great weekend and is enjoying the warmth of June. Love and hugs to all!!!!!
MJ
Quote of the Week:
“Life's challenges are not supposed to paralyze you, they're supposed to help you discover who you are.” ~ Bernice Johnson Reagon
Wednesday, May 30, 2007 9:10 PM CDT
Hi everyone,
Can you believe it, another update already!!! LOL! You can tell I’m sick huh?
My health is pretty much status quo. No better but no worse. Still coughing up lots of colorful stuff that are nice and thick. Still having plugs that make it so I can’t breathe…no fun at all! My heart rate is still fine but sats love the 80’s at night. I am still using one Liter of O2 at night to maintain my sats and get my rest. Dr. Mueller started me on another round of antibiotics, yet again. I will start Zithromax on Friday (tomorrow is my last day of Cipro). Hopefully, I can get my lungs cleared out soon!
I got great news today. As of right now, I have an A in biology class. We have a test next Wednesday but I do not have to take it if I do not want to. My teacher drops the lowest score so no matter what my test score would be, I would still end up with an A. That was not a tough decision, I opted to skip the test next week, during finals week. Total non-brainer there!!! Tomorrow I have no class, so I will finish rewriting my English paper and turn it in Friday and be done with English class too. I have 1 paper left in History and a test in Rehab. HOORAY!!!!
We had a good weekend at GJ’s. Friday night we ate out and enjoyed hanging out and talking with GJ. Saturday, we did the same thing. Brenda ended up making 4 fleece blankets for B4SMA over the weekend. Sunday, Brenda took GJ, Zack, and I shopping all over. We had a great time. My aunt Jill has pneumonia so please say an extra prayer for her to get better!! We came home Tuesday afternoon after stopping at Brianna’s to pick up Mr. Bear to send him on his next journey.
Today was a long day!! I had class from 9am until 1pm. After class we came home for a quick bite to eat and pack Mr. Bear up for his visit to Logan. He was very excited and can not wait to meet Logan. This afternoon, I had a reception to attend. After sending out Mr. Bear and picking up a great box of fabric (Thanks Chloe, your grandma rocks and is the best), I attended the Dean’s List Honors Reception. For winter quarter I received Highest Honors Recognition and the awards ceremony was tonight. I received a certificate and Brenda and I had a nice buffet dinner. I think that is about all for now.
Prayers for all of my friends who are sick or in the hospital: Danny J, Logan H, Julia K, Lizzy H, Jerika B, Emily L, Billy T, Addison K, Madison R, and TJ! Hope everyone had a great weekend and is enjoying the last days of May. Love and hugs to all!!!!!
MJ
Quote for the Week:
What Beaches Teach Us
Shell out kindness to everyone.
Stand up and ride the wave of faith.
Sometimes you have to swim against the tide.
Count on prayer to keep you afloat.
God's love is a "shore" thing!
Friday, May 25, 2007 1:07 PM CDT
Hi everyone,
Can you believe it, two updates in one week!
Class got out early in biology today so I am writing a quick update before the weekend begins. My health is somewhat improving but not completely. I went on Wednesday to have a new set of X-rays and blood work done. We haven’t seen the results but Dr. Mueller said that only my potassium was running a little low, but I’m always a little low there, so no big deal. My X-ray hasn’t changed and still have pneumonia in my lower left lobe! I have been coughing and nebbing and hoping to get it to open up. Right now my secretions are so thick that it is hard to bring anything up. I am still on Cipro for another week and return to see Mueller on June 8th. I’m off Codeine since my heart rate has finally returned to normal but use 1L of Oxygen at night so I can rest easier.
I did get into Decision Making class for fall, so that is good. I have 2 regular classes and 2 online classes. The best part about it is that I only have 1 class a day on campus and no early morning! My earliest class is my Biology lecture which is at 11am. Hooray!!
In a few minutes, we are off to GJ’s house for the weekend. I have no class until Wednesday, so we are off to enjoy ourselves and get a little rest. Hopefully, being at GJ’s will make me all better!! I hope so as I’m tired of being sick!! Brenda is going to make blankets and I will have fun with everyone. We are also going to celebrate Brenda’s birthday this weekend.
I hope everyone has a great weekend. Prayers for all of my friends who are sick or in the hospital: Danny J, Logan H, Erinne W, Julia K, Malorie F, Lizzy H, Jerika B, Emily L, Billy T, Madison R, and TJ. Have a great weekend and I’ll be back Tuesday sometime. Enjoy your family this weekend and be safe!!
MJ
Quote for the Weekend:
You don't choose your family. They are God's gift to you, as you are to them. ~Desmond Tutu
Monday, May 21, 2007 7:54 PM CDT
Hello again everyone!
Classes are going okay. I have been keeping busy with classes ending on June 1st with finals to follow the week after that. I only have two finals which are just basic tests, so I am glad about that.
My health is still not better. Not really sure what the heck is going on, but we are trying to figure it out. Since my last update, my bronchospasms are lessening, which is great, but (and yes, there is always a but), my heart rate has been sky high. Okay, so backing up, I was started on DuoNeb and Atrovent. They both had a positive affect right away. The Atrovent stopped the post nasal drip and the DuoNeb seemed to open my airway some more than before. I tried the Advair on Wednesday and it did not work at all, or maybe it worked too well. Right after I took it, my heart rate shot from 100 to 125 and I was having tremors. I couldn’t drive my chair and I could not type at all, my hands were twitching too much. It was frustrating to not be in control. Dr. Mueller also wanted to try using a PEEP Pressure of 6 on my vent. Brenda tried 5 on Wednesday night and my heart rate shot up to 140 and my sats went down to 92 as a high. She dialed it down to 2 and my heart rate went down to 130 and my sats went to 94, but no higher. My sats were also low all night, down into the 70’s again for long periods of time. Brenda used supplemental oxygen bled through the vent to keep me up so she could sleep (after 4am). Thursday, my heart rate was slightly elevated but after talking to Dr. Mueller we decided to start up antibiotics again and to quit the Advair. He wanted us to try PEEP again, but at 4. Guess what, it still didn’t work: same as before, sats down, heart rate up. Brenda turned it off after 2 hours, but my heart rate never stabilized until I went to bed Friday night. Spring forward until today, Monday evening, my heart rate is usually 110 to 150 during the day and 90 to 130 at night. This is very high for me and we are trying to figure it out quickly. At night I have used Tylenol with Codeine and oxygen to help me sleep because it hasn’t been easy sleeping with my heart pounding so hard….sounds like someone is knocking but it has only been me!! Not sure what is going on but hope we figure it out soon!
I have not found out yet if I can get into Decision Making for fall quarter. I was going to call today, but it was Freshman Registration day for Honors Students, so no one was in the office. Will try again tomorrow.
Friday I was interviewed by the college and the office of disability services. I reported at 11am and due to scheduling issues, I wasn’t interviewed until 5:15. It was fun and I enjoyed it much more than I used to. The movie will be marketed for all colleges nationwide and also for a television special (possibly, if they get their way). How cool is that! Brenda said I did really well.
Saturday was really great! I got to meet GaGa, grandma to Sophia S, and Aunt Kay! They came at 11am and we shared pictures, stories, and lunch at Bob Evans. Yum! Brenda and I had a wonderful time! Thank you GaGa and Aunt Kay for a wonderful day.
Please keep my friends in your prayers too. A lot of kids are under the weather as allergies this year have been really hard on everyone. To visit my prayer requests, please visit: www.our-sma-angels.com/b4sma/prayers.htm Our thoughts and prayers are with everyone. We love you all! Big hugs to everyone!
MJ
Quote of the week:
Life is not about
the end of the story
where you put down the book
with a satisfied smile.
It’s about all the chapters
in between that make your
heart race, bring a smile,
and make you cry
as you work your way,
deliciously exhausted
to the end.
Where you get to say…
That was a great story!
~ Unknown
Thursday, May 17, 2007 10:54 PM CDT
I had a crappy night last night! Dr. Mueller wanted
Brenda to add a PEEP pressure to my vent last night, of 6cm. Brenda
started at 5cm and my sats went to 92 and my heartrate went to 140 (from
95). After a bit, she dropped the PEEP to 2cm and my sats went up to 94
and heartrate down to 130. After an hour, I dropped down to the 70's
(my O2 level). I got down to 75 and I didn't come back up for a long
time (90 min). We coughed, did neb, CPT, etc...Brenda turned on the O2
and bled 1.5L into my vent and I went up to 92. Brenda was exhausted so
she went to bed. My sats stayed above 94 the rest of the "morning". I
coughed up lots of yellow mucus during the night and this morning. We
called Mueller and he is starting me on Cipro tomorrow morning (we were
too tired to go get it tonight) for 14 days. Not really sure what is
going on, but something is just "off".
Wednesday, May 16, 2007 1:54 PM CDT
Well, here is another update. Been busy since Thursday and lots going on. I forgot some information last week and have more stuff to share.
First of all, no, I am not better yet. Still having a lot of issues with broncho spasms and not breathing! My sats have been dropping at night into the 70’s and after about 30 minutes of Brenda doing my neb and extra’s, I finally come back up. I went to see Dr. Mueller yesterday just to see if there was a quick fix…but you know me, there is never anything easy. I had a chest X-ray first that showed ragged edges in my left lower and left middle lobes. So problem 1) I have either atelectasis or the beginning of pneumonia, we will keep an eye on that. We adjusted my vent settings a bit and hopefully that will help. Problem 2) My bronchospasms – aren’t really responding to nebs so based on my symptoms, my vocal cords are closing randomly and not allowing air through. I had a blood test (of course, my right index finger at the side by my knuckle) to test for my blood serum calcium level. If it comes back “off” then more blood tests. Oh, JOY! LOL! We have noticed that if the pollen count is okay the following day, I do better and if it is a bad allergy day, the following day sucks for breathing. So, I was started on Advair, Atrovent, and DuoNebs. I can also increase the liquid albuterol since it does well and keeping me more open during the day. Hopefully, the three meds will help the bronchospasms along with the bad allergy season and I will quit my new trick! If these drugs don’t work, then we are going to explore reflux. I haven’t noticed any reflux, but I was a silent refluxer 4 years ago. I did learn some interesting facts today about the Nissen fundiplication surgery. First of all, the normal failure rate is 15 People with neuromuscular disorders makes that increase from there….and being overweight, further increases it. So basically, I probably have reflux, but we are waiting to check to see if these meds help before adding even more! UGH!
This morning I registered for fall classes. I just registered for summer classes, which don’t start until July 12th, but I am ready for fall already. I am taking Biology: Biodiversity – this class is writing intensive and has 2 hr lab one day a week. I am also taking Medical Terminology which is online, so that is good…I really like these online classes. I am also taking Drugs and Alcohol for my major. Before you say it, no, I am not taking any other drugs except for the ones that are prescribed and I haven’t taken up alcohol!!! It is also a writing intensive class so I will be writing a lot!! My last class is Decision Making!! Sounds fun or interesting at the least, don’t ya think. It is yet another writing intensive class and is online. Right now I am on a waiting list of this class. I am in the second group to register for classes and it was already closed. I talked to the department but they believe my chances are good to get on the list. If I can’t get into Decision Making, I will be taking Abnormal Psychology class. I can forsee me being home a lot writing paper after paper in the fall quarter.
My tour went well and I was done and at the grocery store at 8:30am. I finished my project and have all my papers done for Rehab Class. I only have 2 papers left to write for History class too, so that is good. English class I have to work on rewriting my two papers and finish my log and then am almost done! Classes are done on June 1st and then the following week I have 2 finals. I only have a weekend off between sessions.
Oh, and before I forget, dinner with Chef Zach was delicious! We didn’t just have grilled pizza, we had 3 more courses. We had to rate which was our favorite and least favorite and most of us had problems doing that. We ate Ziti Eggplant and Fontina Gratin, Roasted Green Bean and Potatoes with Soppressata and Mozzarella, Grilled Pizza, and for dessert we had Lemon-Ginger Crème Brulee. Zach can cook for me anyday!!!
Okay, now the good and exciting news. Last week I was asked to be interviewed by the college and the office of disability services. On Friday, I will be interviewed for a local video about successful transitioning into college. They want to interview me because I am so well adjusted and haven’t had major issues since starting. Most of the staff at disability services and the honors program all think I’m a junior because I am too mature to be a freshman. Whatever! So anyway, I will be interviewed (I did ask for a copy for myself) and it will be marketed for all colleges nationwide and also for a television special (possibly, if they get their way). How cool is that! Really outside my box of usual activities, but I’m branching out!
Please keep my friends in your prayers too. Jackson H. passed away and flew with the angels yesterday. He was only 18 weeks old but had been through so much in such a short time. Thanks for all the prayers for Charlie S, Malorie F, and Erinne W as they all had successful surgeries and are all home already!!! Prayers for TJ who is going to be having his Gtube surgery this week and all of our other friends who are feeling under the weather. Our thoughts and prayers are with everyone. We love you all! Big hugs to all.
MJ
Quote of the week:
Children will not remember you for the material things you provided but for the feeling that you cherished them.
Richard L. Evans
Thursday, May 17, 2007 10:54 PM CDT
I had a crappy night last night! Dr. Mueller wanted
Brenda to add a PEEP pressure to my vent last night, of 6cm. Brenda
started at 5cm and my sats went to 92 and my heartrate went to 140 (from
95). After a bit, she dropped the PEEP to 2cm and my sats went up to 94
and heartrate down to 130. After an hour, I dropped down to the 70's
(my O2 level). I got down to 75 and I didn't come back up for a long
time (90 min). We coughed, did neb, CPT, etc...Brenda turned on the O2
and bled 1.5L into my vent and I went up to 92. Brenda was exhausted so
she went to bed. My sats stayed above 94 the rest of the "morning". I
coughed up lots of yellow mucus during the night and this morning. We
called Mueller and he is starting me on Cipro tomorrow morning (we were
too tired to go get it tonight) for 14 days. Not really sure what is
going on, but something is just "off".
Wednesday, May 16, 2007 1:54 PM CDT
Well, here is another update. Been busy since Thursday and lots going on. I forgot some information last week and have more stuff to share.
First of all, no, I am not better yet. Still having a lot of issues with broncho spasms and not breathing! My sats have been dropping at night into the 70’s and after about 30 minutes of Brenda doing my neb and extra’s, I finally come back up. I went to see Dr. Mueller yesterday just to see if there was a quick fix…but you know me, there is never anything easy. I had a chest X-ray first that showed ragged edges in my left lower and left middle lobes. So problem 1) I have either atelectasis or the beginning of pneumonia, we will keep an eye on that. We adjusted my vent settings a bit and hopefully that will help. Problem 2) My bronchospasms – aren’t really responding to nebs so based on my symptoms, my vocal cords are closing randomly and not allowing air through. I had a blood test (of course, my right index finger at the side by my knuckle) to test for my blood serum calcium level. If it comes back “off” then more blood tests. Oh, JOY! LOL! We have noticed that if the pollen count is okay the following day, I do better and if it is a bad allergy day, the following day sucks for breathing. So, I was started on Advair, Atrovent, and DuoNebs. I can also increase the liquid albuterol since it does well and keeping me more open during the day. Hopefully, the three meds will help the bronchospasms along with the bad allergy season and I will quit my new trick! If these drugs don’t work, then we are going to explore reflux. I haven’t noticed any reflux, but I was a silent refluxer 4 years ago. I did learn some interesting facts today about the Nissen fundiplication surgery. First of all, the normal failure rate is 15 People with neuromuscular disorders makes that increase from there….and being overweight, further increases it. So basically, I probably have reflux, but we are waiting to check to see if these meds help before adding even more! UGH!
This morning I registered for fall classes. I just registered for summer classes, which don’t start until July 12th, but I am ready for fall already. I am taking Biology: Biodiversity – this class is writing intensive and has 2 hr lab one day a week. I am also taking Medical Terminology which is online, so that is good…I really like these online classes. I am also taking Drugs and Alcohol for my major. Before you say it, no, I am not taking any other drugs except for the ones that are prescribed and I haven’t taken up alcohol!!! It is also a writing intensive class so I will be writing a lot!! My last class is Decision Making!! Sounds fun or interesting at the least, don’t ya think. It is yet another writing intensive class and is online. Right now I am on a waiting list of this class. I am in the second group to register for classes and it was already closed. I talked to the department but they believe my chances are good to get on the list. If I can’t get into Decision Making, I will be taking Abnormal Psychology class. I can forsee me being home a lot writing paper after paper in the fall quarter.
My tour went well and I was done and at the grocery store at 8:30am. I finished my project and have all my papers done for Rehab Class. I only have 2 papers left to write for History class too, so that is good. English class I have to work on rewriting my two papers and finish my log and then am almost done! Classes are done on June 1st and then the following week I have 2 finals. I only have a weekend off between sessions.
Oh, and before I forget, dinner with Chef Zach was delicious! We didn’t just have grilled pizza, we had 3 more courses. We had to rate which was our favorite and least favorite and most of us had problems doing that. We ate Ziti Eggplant and Fontina Gratin, Roasted Green Bean and Potatoes with Soppressata and Mozzarella, Grilled Pizza, and for dessert we had Lemon-Ginger Crème Brulee. Zach can cook for me anyday!!!
Okay, now the good and exciting news. Last week I was asked to be interviewed by the college and the office of disability services. On Friday, I will be interviewed for a local video about successful transitioning into college. They want to interview me because I am so well adjusted and haven’t had major issues since starting. Most of the staff at disability services and the honors program all think I’m a junior because I am too mature to be a freshman. Whatever! So anyway, I will be interviewed (I did ask for a copy for myself) and it will be marketed for all colleges nationwide and also for a television special (possibly, if they get their way). How cool is that! Really outside my box of usual activities, but I’m branching out!
Please keep my friends in your prayers too. Jackson H. passed away and flew with the angels yesterday. He was only 18 weeks old but had been through so much in such a short time. Thanks for all the prayers for Charlie S, Malorie F, and Erinne W as they all had successful surgeries and are all home already!!! Prayers for TJ who is going to be having his Gtube surgery this week and all of our other friends who are feeling under the weather. Our thoughts and prayers are with everyone. We love you all! Big hugs to all.
MJ
Quote of the week:
Children will not remember you for the material things you provided but for the feeling that you cherished them.
Richard L. Evans
Thursday, May 10, 2007 9:10 PM CDT
Sorry, I haven’t updated but you know how it goes. I have been sick since Saturday morning. You know how I LOVE to sleep in on Saturdays but I woke up at 7am wheezing, coughing, and having trouble breathing. I kept having broncho-spasms that would cause me to lose my breath all weekend. It was quite scary! I am used to the wheezing and coughing but the spasms were new. Leave it to me to be difficult. My heart was racing most of the time and I was sweating and hot all the time. I stayed home all weekend and had to miss Chef Zachary cook his delicious meal (from what I hear). Brenda called the doc on Monday and I was started on a steroid burst for 5 days (but we extended it for 5 more) and Zithromax (since I was coughing up yellow chunks of mucus). So, how am I tonite…well, I am feeling better. I am still having the spasms, mostly at night, just to freak Brenda out. I am tired but getting a bit better. Not really sure what it was/is but I don’t like it.
Classes have been okay. I ended up with a 90 on my biology test due to a scoring error, so that was good. We did my accessibility study for Rehab class and it was okay…I was with the laziest group I think. One girl wrote the report and I rewrote it cuz it sucked. I guess I’m too particular. LOL! Tomorrow I am touring the Cox Children’s Rehab Center in Dayton for my last Rehab project (isn’t due until May 30th). I have an appointment at 8am…luckily I only have one class at 12 tomorrow and can come home and take a nap.
Oh, my English teacher let me out of watching American Psycho. I had to watch Volver instead. It was pretty good. It is in Spanish with subtitles. I had to watch it on my computer since my TV is so crappy the captions wouldn’t show. UGH!
My appointment for my manual wheelchair went great. Brenda and I really like Jim and how knowledgeable he was. I am going to get the Degage manual chair, made by my friend Greg. I am also going to get a new lift, since mine keeps falling apart and new tires for my power chair.
This weekend, I hope to go to grandmas since Zachary is cooking again. He is making grilled pizza. Sounds pretty good to me, what about you?
.
Please keep my friends in your prayers too. Jackson H. is still having blood clotting issues that they haven’t figured out quite yet. They think they might have an answer so please pray that they get an easy answer. Also prayers to Charlie S and to Malorie F who had their growth rod surgery Tuesday. They were extubated and making progress. Prayers that they come home soon. Also prayers to Erinne W who is having her growth rod lengthening spinal surgery tomorrow. Also prayers to Mary Kate, TJ, and Travis who are in the hospital. Our thoughts and prayers are with everyone. We love you all! Big hugs to all.
MJ
Quote of the week: Friendship... is not something you learn in school. But if you haven't learned the meaning of friendship, you really haven't learned anything.
Muhammad Ali
Wednesday, May 2, 2007 9:16 PM CDT
So, I’m doing better, homework wise. I have worked ahead in History so I have more time during the week to keep up.
I have been busy, of course and this week has had me coming and going!
Where to start…My Bio test went well…got an 88, think I only missed the stuff regarding hormones and the endocrine system. The next chapter we did was the respiratory system (too easy). I could have taught it! English class is English class. My paper went okay. We didn’t really have class yesterday, we met and exchanged papers with our assigned partner and left. SIGH! I found a lot of useful information so my paper went together easily. I also watched Kill Bill, Vol. 1 over the weekend and was physically sick from it. Could not stand watching it. I emailed my teacher to get permission to not watch American Psycho…I have to watch Volver instead. History, I am caught up until May 11th, so that is awesome (well, I just have to answer the short answer discussion on the board, but that is no big deal. Rehab is okay. Had our first test today. Most was common knowledge (for me) but the wording on some of the questions was so screwy that I had no clue what she was asking. I got an A on my paper about the facility visit and my teacher was glad that I voiced my opinions so she knew. Today after class, my teacher stopped me to ask what my T-shirt meant (Stop me before I volunteer again!). I told her about the websites that I do, the fundraisers, the mini gathering and then B4SMA. She asked me what SMA stood for. She had never heard of it, so Brenda and I gave her a brief lecture. She was shocked at how common it is but yet not known.
Yesterday for class, (note, why I am dressed up in the picture) I had to go interview someone in the rehabilitation field. I went to the Wellington Nursing Home and interviewed the administrator, Diana and then met with Rebecca about the website. After that, we went to visit grandma June and took her out on the town, to the airport for lunch. We all had meatloaf and hash browns.
Tomorrow I am restarting the process of my manual wheelchair. My grandma found a company that helps at the nursing home and they are coming to my apartment tomorrow to talk and measure. I can’t wait. Hopefully, it won’t take forever!
Last weekend, we stayed home and worked on homework. This weekend we are going back to Grandma’s since Zachary has to cook a 4 course meal for his Latin class. We get to be the critics.
.
Please keep my friends in your prayers too. Jackson H. was diagnosed with a clotting problem in addition to SMA. Also prayers to Taylor W, Mary Kate, TJ, and Travis are in the hospital. Also our friends Hayden, Kyle, Sophia D, and Chase are sick. Also prayers to Charlie S, Malorie F, and Sydney C, and Erinne W are all having spinal surgery within the next week. Our thoughts and prayers are with everyone. We love you all! Big hugs to all:
MJ
Quote of the week:
Sometimes all it takes is a little grace, a little of God’s grace, problems seem to fade away. Enjoy the benefits, don’t question them. My ways are not your ways. I’m mysterious…live with it! From Saving Mum
Wednesday, April 25, 2007 5:23 PM CDT
Sorry for the delay in updating again…hopefully, I will get back to weekly, but don’t hold me to that!
See, I already failed in updating. My schedule is easier, but I just can’t seem to get it together. This quarter I am more tired than normal. Sigh!
Classes are going okay. I have a biology test Friday and boy, do we have to know a lot of stuff. English is fine, I did watched Brokeback Mountain over the weekend and liked it (1 out of 3 so far), LOL!! I have to start writing my major paper for next week. Of course, I picked a topic that has no articles written about it, so I have to “wing it”. My topic is “Disabled in Disney World: Male Monster to Hero!” History is going fine…got an A without even putting forth an effort, LOL!! Rehab, is just rehab. We went on our group facility visit last week. The facility was wonderful, but I was offended (what else is new!). First of all, the wheelchair door button worked somewhat, you pushed the button and then had to turn the door handle and push. Gee, very helpful, don’t ya think. Then, the special ed teacher patted my arm and said in that sweet sappy voice, “Oh, it is so great to see you sweetie!!” Gag!! Then a few people we met on our tour asked if I was the new client? UGH!! We were introduced as Wright State students to everyone and they had the nerve to ask me. I will stop there, makes me mad, I of course, wrote that in my paper due today. LOL!!
Last weekend, we stayed home and worked on homework. Brenda made another blanket for a boy from New Hampshire which makes 381!! My friend Beth P and I are setting up a mini-mini gathering in Cincinnati for June…just to get together to hang out. I also bought a new shirt that suits me perfectly. The shirt says, “Stop me before I volunteer again!!”
I also got a note last week that I was nominated for the National Society of Collegiate Scholars. I will be inducted in October!
This morning, I registered for summer classes. I am taking 12 hours of class in session A (I will have class for 5 weeks). Classes start June 11th and end July 12th. Talk about cram city…LOL! I am taking Essentials of Public Address, Comparative Nonwestern Cultures: Music, and Music in Western Culture. No, I haven’t decided to take up music, both are required as Gen Ed classes. The best part of these three classes is that they are all on-line web classes. I don’t have to “get up” at any specific time and don’t necessarily have to leave my cozy bed if I don’t want to. A true slacker I have become!!!
On a sad note, I received a note that one of my little friends, Kalair, passed away yesterday morning. Please keep Kalair’s family in your thoughts and prayers. I had the privilege of meeting Kalair twice and she was such a true princess. I will miss her presence but will never forget her.
.
Please keep my friends in your prayers too. Julia K was released from the hospital and is home and doing better, Madison R is sick as is Dani P and Jackson H. A family we were talking to there daughter, Kaylie, passed away over the weekend, so keep them in your thoughts too. More prayers to Kimi who lost her fiancée, Eric, recently. Also prayers to all the new families who are just starting with SMA, those that are in the hospital, and everyone else who needs some extra thoughts.
Big hugs to all:
MJ
Saturday, April 14, 2007 9:09 PM CDT
Sorry for the delay in updating again…hopefully, I will get back to weekly, but don’t hold me to that!
My post nasal drip did turn into a sinus infection with it trying to swing into pneumonia. Brenda started me on Zithromax after my sats dropped to 67 one night (yes, that is a 67)! I am more tired than usual, which is surprising since my schedule is pretty easy but I guess my allergies have something to do with that.
Classes are going pretty well. Three weeks down and 7 more to go. In 10 days I register for summer session already. I am staying here part of the summer to attend summer school. I am three hours short to get scholarships in September, so I need to take at least one class. I’ll let you know after I register what I am taking!
My biology class is going well. My new lab class is fine. The TA’s do the hand work for us and we just write up what they did. I really enjoy my teacher though. She teaches the biology class in the winter session so I am going to wait till Winter Session to take that biology class (plus it is the only other time to take it besides this summer and they cram a semesters worth into 3.5 weeks…way to stressful for me!!). English is dreadful, as expected. Watched The Piano last weekend. It was a great movie until the husband chopped his wife’s finger off with an ax. I could have gone without seeing that. Next to watch is Brokeback Mountain. History class is fine. I have written 2 papers and am ready to write #3 now. I enjoy online classes and am going to try to take them again. Rehabilitation Services class is okay. Dreadfully long (3 hours) and it really makes the day go slow. I get so excited when Wednesdays are over.
Other than that, things are going well. Today, we went to Cincinnati to the OKI Annual SMA walk. It was a crappy, rainy day, but they moved the event inside. I did give out 2 more blankets today. It was great to see all the families again. I enjoy seeing how much everyone has grown up. To see pictures, please visit:
http://www1.snapfish.com/share/p=272141176580830118/l=259542298/g=5758299/cobrandOid=1000131/otsc=SYE/otsi=SALB
On a sad note, tonight I received a note that one of my little friends, Christian, passed away. Please keep Christian’s family in your thoughts and prayers. I met Christian twice and he was such a little cutie. I will miss him but will never forget him.
Please keep my friends in your prayers too. Julia K is still in the hospital but doing better, Ashley H who was just released from the hospital, and Sophia S who has been under the weather and her protector, Xena, died unexpectantly today. Also prayers to all the new families who are just starting with SMA, those that are in the hospital, and everyone else who needs some extra thoughts.
Big hugs to all:
MJ
Quote of the week:
"No love, no friendship, can cross the path of our destiny without leaving some mark on it forever."
- Francois Mocuriac
Remember Me With Sunshine
Remember me with sunshine, laughter, joy, and song.
No tears please, for Im with Jesus now, where I belong.
Although my stay here with you, was oh so brief,
Giving up my earthly form was such a relief.
Throughout my short life I've received so much,
Everyone's love and tenderness in each soft touch.
As you remember me in the coming days,
Remember that I loved you all in very special ways.
Im laughing with the angels now,
and I hope you will laugh too,
Because from here in God's Kingdom,
the world is a beautiful view.
~Author Unknown~
Thursday, April 5, 2007 11:22 AM CDT
Geez, here it is Thursday and no update from last week. I have been super busy but yet tired and trying to get back into the swing of things. My allergies have been kicking in so the post nasal drip is driving me crazy.
Classes are going okay. I have 4 classes and only have one class a day except Wednesday, I have 2. So last week…biology is okay. The teacher talks super fast and it’s a good thing she posts her notes on the internet, because no one physically can write that fast. She gives us study questions to help study for the test so that is helpful. We have a test Monday, which I get to take in the classroom with everyone else…I’m skipping disability services since their computer keyboards aren’t working. English class is okay but probably gonna suck since we have to watch 6 movies and I haven’t seen any of them and they are not my idea of fun. We already watched Thelma and Louise and I didn’t like it. My teacher said it was a “female empowerment movie” but all I got out of it was a chick flick gone bad with 2 females going on a crime spree. We also have to watch The Piano, Fight Club, Kill Bill, Brokeback Mountain, and American Psycho…these are for Gender and Film. Oh joy!! My Tuesday Biology lab was changed…or actually, I got “kicked out” of my Tuesday lab class…LOL! We were doing microscopes and I asked the teacher how I was to do my lab. I was informed that I needed to come back to the “adapted lab” on Thursday which wasn’t listed in the course studio. It was okay, but way understaffed so instead of taking 20 minutes it took an hour. Sigh. My History class is okay. We have to write a paper each week and 2 for the last week. It is completely online, so we have “online” discussions. Every Wednesday, the teacher posts a question about a chapter in our $100.00 book, which we started on page 600. She didn’t get the memo that you could just order the last third of the book and only make the students pay $40…ugh!! So, for our discussion, you have to post your answer to the question and reply to 2 students each week.
My last class is my Intro to Rehabilitation Class. I must say it was interesting. Having SMA, I am used to doctors telling me that I am going to die, which of course, I never listen, but having a teacher tell me that was quite interesting. No, don’t worry, she didn’t say it to my face but made a general statement. She introduced to the class People First Language, where you refer to the person first and the problem later. So, I am not supposed to refer to myself as disabled (I’m no longer disabled!!!!) but am a person with a disability. To me personally, it still doesn’t change the fact that I’m disabled. But anyway, we watched this really lame old movie about the “Ten Commandments of Communicating with a Person with a Disability.” So after the movie was over, the teacher commented that she hates people who refer to themselves as blind or disabled, but hopefully by the time we graduate (3 years and 3 months) “they” will all be dead! Well, since when asked, I say I’m disabled, I guess I have 3 years and 3 months left to live. Only I could come to that conclusion and laugh about it!!! It will be an okay class, we do a lot of off campus trip, all on our own time, which should be interesting. We have to visit a facility in 2 weeks and my friend Sara, who is also in a chair was told to go to ODS (disability services) and they will teach her how to use the city bus to get where she needs to go. Luckily Brenda can drive me since my facility is NOT on a bus line!
We went to GJ’s on Saturday to visit and had taco salad for dinner. We had a great time. Other than that not much else has been happening except for us trying to get my monthly medical supplies. Brenda has been yelling at the DME. She ordered my stuff last Tuesday, and it was sent to New York. GRRRR!! Doesn’t really help me there, now does it. I was really getting low on Tolerex so Brenda demanded that they send me Tolerex on Friday so we wouldn’t run out. They told Brenda it was sent out Friday and on Monday they would go to NY and pick up the order they sent to the wrong place and redeliver it to my apartment. This Tuesday we went to pick up a package and it wasn’t my food YET!!! The DME said it was being delivered Tuesday but it never arrived. Yesterday, we went again to get a package and it still wasn’t my food!!! So, Brenda called YET AGAIN and was told it was left at the side door??? How does a package get left at a side door of a campus??? We demanded that they figure out where it was delivered (which they didn’t want to, like we were asking for a million dollars or something). Guess what, they delivered my food to Grandma June’s house. Brenda hit the roof….how can they screw up so much on one order and continue to be rude about it, like it was our fault. Brenda is soooooo fed up with them!! So, after class and some yelling we headed up to GJ’s house to get my food. And while we were there, the rest of my order showed up at GJ’s. GRRRRR! I did get to see Aunt Melissa before she headed home (this morning) and got a great dinner too. We had ham loaf, baked potatoes, and green beans….yum!!!
Today I have biology lab and we are doing bacteria stains. This weekend I will be studying for my first biology test (Monday) and writing my English paper on why I hated Thelma and Louise (I was the only one in my class who didn’t like it). We are going up for Easter dinner Sunday at GJ’s.
Please keep my cousin Sarah and my friends, Julia K, Jenna B, Ashley H, Madison B, and Erinne W in your prayers along with anyone else who is under the weather or having surgery. It has been a hard start to spring this year. My allergies have been bad so far this spring. Big hugs to everyone.
MJ
Quote of the week:
To get all there is out of living, we must employ our time wisely, never being in too much of a hurry to stop and sip life, but never losing our sense of the enormous value of a minute. ~ Robert Updegraff
Sunday, March 25, 2007 8:47 PM CDT
Hi all:
Well, spring break is over and back to the books. I know this sounds weird, but I’m ready to be back. I need a vacation from a vacation.
First of all, my heart and thoughts are going out to Logan Watts’ family during this time. Logan, age 2, passed away from SMA suddenly. Logan will never be forgotten!!
Also, big prayers are heading out to Julia K, Brianna M, Paul G, and Ashley H during their hospitalizations.
So, my vacation….I was very busy and definitely need a vacation!! I spent Monday, Wednesday and Friday with Grandma June. She did make it home Friday, so we are all happy, especially her.
Tuesday, Brenda and I went shopping at Joann Fabrics and the van didn’t like it. After we loaded ALL the fabric in the van, the van refused to start. I guess the fabric won and killed the van. We called the tow truck who came to try to get it started, but it wasn’t having any part of that. We also got the minivan back, yet again! Of course, I don’t complain since I LOVE the minivan. We were stuck at Joann’s for 90 minutes and after the minivan arrived, we did go to the mall for dinner and new tennis shoes for me. Our day was pretty much ruined as we spent the day doing nothing but waiting…but we did get some cool fabric for B4SMA.
Thursday we went to visit Brianna S. We had a great time and a great visit. It is good to meet new friends who are so close to us. We will have to get together with them again soon!
Friday night my dad flew in so it was a long day. I saw Dr. Mueller who said I was healthy and my lungs sounded great. Then we went and stayed with grandma June until dad arrived at 9:40pm. We didn’t get home until almost 11pm.
Saturday we headed back up to grandma June’s. Aunt Jill cut my hair so I feel so much better. I sure needed a haircut! We also went shopping and I got another new pair of tennis shoes. Pictures will have to come later.
Today, I stayed home and relaxed. I worked on websites and making some collages. Dad came down and we ate Qdoba taco salads for dinner.
I have class tomorrow. I have Biology lecture tomorrow from noon until 1 and that is my only class tomorrow. On Monday and Friday, my bio lecture is my only class. Tuesday and Wednesday I have two classes. I also have one totally on-line course and then my English class that is both.
Until next week, prayers for everyone!
MJ
Quote of the week:
No man needs a vacation so much as the person who has just had one. ~Elbert Hubbard
Sunday, March 18, 2007 1:39 PM CDT
Hi everyone:
Classes are done for winter quarter. I have a week off and then back to the books I go. I am pretty excited about my classes next quarter because I have less classroom time than previous. My English class is part of a study that is trialing a new program where one day a week, you have a “traditional” class and the other day a week, you have web class using a new program. Just up my alley….class on the internet!! LOL! I also have another class that is totally on the internet, so I don’t have to get out of my pajamas for that class either!!!
My tests were good. Class on Monday was good. Did my psychology test and went for breakfast and sat with two friends from math class. We were all laughing at the review sheet and Friday’s class and other stuff. After math class, which was short since I had done the review sheet, I went to sell back my books. All but one book they bought back, and the majority brought back enough to buy dinner a few days….LOL!!
Tuesday I had a dentist appointment to check about my arm pain…LOL!!!! The dentist was great. He was quite funny and was very helpful. To be honest, I haven’t seen the dentist in over 5 years because I was having trouble finding one who would take my insurance and who would see me…most tend to freak out when seeing a kid in a chair roll in to their office. Dr. Womack specializes in disabled people, so although he is a pediatric dentist, I can see him all the time while here. Anyway, like Brenda thought, the increase “uptake” that showed up on my bone scan was caused by my wisdom tooth coming in. I have no cavities and my teeth are perfectly healthy. I didn’t even need to have them cleaned!!! He was amazed since I do not use a toothbrush and only use the toothette sponges. He told me to keep doing what I am doing now and don’t change anything. I do have to continue to see him every 6 months just to check my wisdom teeth since my back teeth don’t meet so I will definitely have trouble getting them to come in.
Wednesday and Thursday I hung out and played on the computer and relaxed. I did have to run my final paper into class on Thursday afternoon and also sent out 3 more blankets, but otherwise an easy day.
Friday I had my math test and it was easy. I was done in about 35 minutes (we had 2 hrs). I didn’t want to be the first one so I waited, but after 15 minutes Brenda said we were done and handed my test in and then about 6 others jumped up too. Half of the kids found it easy and the others found it hard. All of the questions were on previous tests, quizzes, or class examples. After class we went to visit Grandma June. She is still in the nursing home due to some minor setbacks (reaction to medications). We took her some acidophilus that I have been using to help her thrush. We are also going to take her to see her surgeon tomorrow since I have the week off.
So, that was my week in a nutshell. This coming week I am, of course, taking GJ to the doctor tomorrow and on Friday have a routine follow-up with Dr. Mueller. Sometime this week, I am going to go visit a family that lives 10 miles from me who has a daughter who is almost 8 with SMA. I am excited to meet someone new. My dad is flying in for the weekend on Friday, so that is good.
Other news: my second annual calendar for SMA is going okay. I have gotten a few families signed up with pictures already and more who will send pictures later. I hope I have a good turnout this year as last year.
Also, yesterday marked the third anniversary of B4SMA. I can hardly believe that I started B4SMA three years ago. Tomorrow or Tuesday, we are sending out blanket 365!!!! It is so hard to fathom that there are that many kids/families that I have met or been in contact with from all over the world. Thanks everyone!
Prayers heading out for lots of kids…even though the weather is getting warmer, this time is the hardest on us all, the germs have to get their last kick in at us. Prayers for Brianna M, Allyson K, Julia K, and all of the other new families that were just diagnosed or going through their first illness. Hugs and prayers to all of those that are home but sick and struggling right now. My thoughts and prayers are with you all!
Love MJ
Thought of the week:
Reflect upon your present blessings - of which every man has many - not on your past misfortunes, of which all men have some. ~ Charles Dickens
Sunday, March 11, 2007 2:25 PM CDT
Hi everyone:
Another week gone by and I have survived more doctor’s stupidity. I am officially done with classes. Tomorrow is the start of my finals. I have a test tomorrow morning at 9am and one Friday at 10am. I also have my final portfolio due in Disability in Literature and Culture on Thursday. I am almost done with my final paper for it, just have to add my introduction and type up the works cited page. I, of course, wrote about SMA, doctors, and communication.
Tuesday I had my appointment with Dr. Mikutis to go over the test results about my MRI from last week. UGH! He told me that my rotator cuff was fine and in tact, but because I have no muscle, the bones were banging together. Hmmmm. Okay, so I asked him how my arm looked. He looked confused and said that they really didn’t focus on my arm, just my shoulder. Brenda and I were confused as my shoulder was never the issue and it was my arm that hurt. He offered to let me undergo the MRI again if I wanted, NO WAY!!! If my shoulder continued to hurt, to call him and he would refer me to a shoulder surgeon. We said no thanks. When we were asked about pain meds, I told him that the neurontin was working fine and he acted like he was glad he thought about it. Brenda quickly informed him that thanks to my pediatrician I was no longer in pain and he had nothing to do with it. We got our sheet and quickly vacated the office after Brenda left a few choice words with the office staff. So, I am not going back to them ever again. If I continue to have problems we will seek out a new doctor, hopefully, one that has a clue!!! LOL!!
Wednesday, we went to visit Grandma June at the nursing home. She might be going home this coming week and if so, we will be spending some of my break week visiting and taking Grandma June out on the town, LOL!!
Yesterday, we went to the annual Angels in the Endzone event of Miracle for Madison organization in Columbus. I had a great time getting to meet many families that I have sent blankets too and talked with over the past few years in person. I also met a new family of a 6 month old who was so cute. A few families, along with Brenda and I were trying to share a lot of information with them regarding options and suggestions. I will be sending the little boy a blanket this week. We were in Columbus from 11am until 9pm, so I slept in today. What a long day, but I had a blast. Click here to view photos from the event http://www.kodakgallery.com/I.jsp?c=a1z30nd.b5nnv9cl&x=0&y=s7vg4y
Next week is break and I am looking forward to having a week off. Big hugs to everyone and prayers to all of those that are under the weather.
Quote of the week:
To succeed... you need to find something to hold on to, something to motivate you, something to inspire you. ~ Tony Dorsett~
MJ
Saturday, March 3, 2007 12:08 AM CST
Hi everyone:
Week 9 is over and done. Class wise, everything went well…life, well, you know me and life surely got in the way this week. You know my motto: Life is an adventure!!
Monday, we got the Neurotin, which after half a dose, quickly managed my pain for a few hours, so that was excellent. Thank you Dr. Proskin, you are the best. I had my math test too, which seemed almost too easy.
Tuesday, I had my meeting with my English teacher to see how I was doing in class and what I needed to do to my final papers. Of course, he started off by saying, “I have good news and bad news!” I hate conversations like that when it is about my classwork or anything really. The good news was that I “don’t have to” rewrite my papers and I would end up with an A….the bad news was that he forgot my papers. We talked for awhile and then Brenda and I went to head back to the apartment. Life got in the way. Got loaded into the van and well, the van was dead. I mean dead!!! GRRRRR! It wouldn’t turn over or anything, except the radio worked. Well, talked to dad, talked to MC Mobility, tried Wheelchair Getaways, etc…nothing. Called dad back who called MC Mobility and Wheelchair Getaways (boy, did I ever need a getaway). Brenda and I walked over to get something to eat, but while in the cafeteria, Wheelchair Getaways called to say that a minivan was going to be delivered shortly, so could we meet the driver outside. Skip food, grab a drink, and walked back to the dead van. We sat and waited for an hour, when MC Mobility called saying they were on their way. We waited 10 minutes and headed outside to get what we needed out of the van. Kenny showed up with the minivan we rented in October and we were on our way. Now to deal with the dead van. Kenny was going to ask around for who could come get the van, which didn’t happen until later so we had to go to the Union to get a temporary parking permit to leave the big van parked on campus. Finally heard from the company at 5pm and that they would get the van in the morning.
Wednesday morning we got up for class and had to leave early because they wanted to get the van right away. Of course, Brenda forgot to grab the ice scraper so we had to sit in the van for the windows to clear. Headed to campus and grabbed the ice scraper out of the big van and headed to class. The shop took the van so that was good. We headed home and ate lunch and I changed clothes (since I had metal on my pants) and did some homework before we headed to Children’s. I had my MRI scheduled. They wanted me to stop “eating” at 3pm and only drink clear liquids. The techs said that my formula would be fine, but I hate to tell them, that my Tolerex isn’t ever really clear. LOL! Well, we just kept the regular mixture and watered it down some more so it was a murky clear. They didn’t even look. It was a challenge getting the lift in the minivan but we got it. Transferring onto the table was fine, it was the moving me into position that sucked. The test took less than an hour and by the time it was done, my legs were completely numb and I was a mess. My back hurt from being on the table, my legs were numb and gaining feeling quickly and painfully, my arm and collar bone hurt from the position my arm was in, and my neck hurt from the angle I was laying. I felt like I was run over by a truck. UGH. We ran into Dr. Mueller and Brenda talked to him about how we got Dr. Proskin to call in my prescription for Neurotin. Told him that we were sick of the policy of “stepping on toes” and were done with their idiotic ways. He was actually embarrassed and apologized for what we had to go through. I told him that I was done with all the tests and if the MRI didn’t show anything, it just doesn’t matter any more. I finally have something that helps the pain and that was the most important thing. We think he got the point and he offered to fill or write a prescription for whatever we want to try or need. We headed home and ate a quick dinner and headed to bed.
Thankfully, I didn’t have English class on Thursday, so I got to sleep in until 11am. Got up and headed to my afternoon class. After class we went and got my packages after mailing out 3 more blankets. Of course, we had the minivan and of course, it was all of my medical supplies. I had 7 boxes that needed to fit in our minivan. After a bunch of squishing boxes, all 7 made it in (with none on my lap) and back to the apartment. Brenda and I were both very tired today, so Brenda ignored the boxes (after she drug them into the apartment) and we ate dinner and went to bed early.
Yesterday, we had a pretty good day. I was still sore from the MRI, but was a little better pain wise, but was more congested. I did start antibiotics on Sunday and was feeling better but Friday was having more issues with coughing. Who knows!!??!! Came back to the apartment and worked on websites while Brenda emptied the medical supply boxes and cleaned some. We then did our Friday afternoon routine…which is pick up packages from Residence Services, get groceries, and go eat dinner. We found a Qdoba restaurant nearby that does take out so we went in and I ordered a naked chicken burrito and Brenda ordered a beef taco salad. Delicious!! Will definitely eat there again! Did more websites and went to bed.
Today, I slept in which was much needed. I will be working on papers this weekend. I have 3 papers to write for Psychology class, rewrite 2 papers for Disability in Literature and Culture and work on my final paper, and was supposed to rewrite my English papers if I wanted to, but my teacher has yet to email them to me. I will also do some math homework (isn’t due until Wednesday, but might as well get it started). I am not going to go visit grandma today as I am still feeling chunky and don’t want to risk giving or getting something else. Hopefully, we will go visit on Wednesday. Grandma June sounded great when I talked to her, she is getting around good and is off pain meds. Hooray!! Thanks to everyone who has prayed for her. Her recovery has been pretty easy and she is enjoying herself at the nursing home.
Next week, is the last week of class before finals. English class is over on Thursday, so I will be done with that one early. Next weekend is the Miracle for Madison and Friends event in Columbus. We are heading over for that. Not sure how long we will stay, depends on how I feel after a long week of classes, but can’t wait to meet some new families that I have talked to online but never met in person. Until next week, everyone stay safe and hope everyone feels better that is under the weather this week.
Quotes of the week:
The purpose of life, after all, is to live it, to taste experience to the utmost, to reach out eagerly and without fear for newer and richer experiences. ~ Eleanor Roosevelt ~
The quality of a person's life is in direct proportion to their commitment to excellence, regardless of their chosen field of endeavor. ~ Vincent Lombardi ~
Saturday, February 24, 2007 3:17 PM CST
Hello again:
Another week has come and gone and still no answers. Sigh!! Only 2 weeks left until finals here and then only a week of vacation!
The weather has been pretty good. I am a true Midwesterner now, I believe. It was 40 degrees and I felt hot outside, compared to what it had been. LOL!! Thursday, I went outside and it was cold again…can’t wait for the warmer weather to return.
Monday, we called Dr. Mueller to say that the Aleve didn’t work. The small dose didn’t help and the bigger doses made me sick. He called in more Tylenol 3 for me.
Tuesday I had my marathon appointment at Children’s Medical Center. We arrived at 8:20am and was called back for my Doppler ultrasound test at 8:40am. The tech seemed a little nervous about me showing up but one of the tech’s from Nuclear Medicine saw my lift and knew it was me and came over to visit. The test was physically easy but mentally hard. I had to transfer onto their gurney, which was like laying on a stone table, very comfortable, NOT! Then they turn off the lights and turn on their music, which just happened to be classical music. Classical music is okay, but I find it very relaxing for trying to go to sleep…no, I didn’t fall asleep, I was too uncomfortable. I did learn that my veins are small and tiny (like I didn’t know that before) and that they like to play jokes or something. The tech would have the vein and then it would just disappear (we joked and said, “Pepsi break!”). I had to have both legs and both arms done (for the pain in my arm just to remind you of why I am having this test!!). The test was over and I was back in my chair at 11:45am and we headed back to the apartment and then to class. It was a long and tiring day!
Wednesday after class we went to Urbana to see Grandma June. She had hip replacement surgery on Thursday (so we went to visit her before her surgery). I hadn’t been up to see her for a few weeks due to the weather and homework. It was great to see her again. She did great on Thursday for surgery. She is recovering well and Aunt Beth is keeping everyone on their toes. Grandma plans to go to the Wellington Nursing Home for rehab on Monday for a couple of weeks, before heading home. Thanks for all your prayers.
Thursday morning I had a follow up appointment with Dr. Mikutis. What an interesting day. He got all of my results and went over them with me. My white blood count was “slightly elevated”, my sed rate was “slightly elevated” and my inflammation rate was, you guessed it, “slightly elevated”. Hmmm, what does that mean. He asked if Mueller put me on antibiotics, “Umm, no? Should I be?” to which he said “Ask Mueller”. He couldn’t put me on them because that was Mueller’s job. Okay, whatever. It showed that it wasn’t a huge infection, just small, but wasn’t related to my arm. On to the bone scan: I have a slightly abnormal arm! Okay, I am slightly abnormally elevated! Whatever that means? He said there was no break that he could see on the bone scan and he wasn’t sure why I was having so much pain. Brenda said that it is interesting that everytime I see a doc or have a test, the baseline level of my pain increases, so they must be doing some damage to me since it only gets worse after a visit, to which Mikutis put my arm down and didn’t touch it the rest of the time! LOL!! After several conversations with other doctors, on Wednesday, I am having an MRI on my arm at 5pm…ugh, 5pm?? Gross!! I then go back to see Mikutis on March 6th. I also asked Dr. Mikutis about Neurotin for pain and he told me that no I can’t have that because that is a “neuro drug” and I have to go to a neurologist for that. What is it out here that there is no teamwork with doctors. None of them will talk to the other, and god forbid one steps on another ones toes.
Yesterday, I had a psychology test in the morning and then math class. Can I gripe here…please?? The test was the third one of this quarter and the Disability Services has YET to fix the computers. None of the on-screen keyboards work. Kind of hard to be independent when the computers used for students with disabilities don’t work, don’t you think?? Thank God it is a multiple choice, so all I have to do it bold and underline the answer. Yesterday was a long day. Dr. Proskin was going to call in Neurotin for me since she wasn’t afraid of stepping on anyone’s toes, but we aren’t sure where her nurse called it in to? Does anyone know??? We called three different pharmacies but no one has it. HMMM!!
Today I am not feeling myself. I have been wheezing and just feel blah! Maybe I will have to start that antibiotic Mikutis thinks I should but won’t. It is supposed to ice tonight and turn to rain for tomorrow.
Quote for the week:
I’m an idealist: I don’t know where I’m going, but I’m on my way. ~Carl Sandburg
MJ
Sunday, February 18, 2007 12:50 AM CST
Hi everyone:
What a week. Has it been just a week since I wrote last??
I had a relaxing weekend last week and got my work done. Monday was cold but a snow storm was predicted so Brenda and I ran errands. I went to pick up my Diflucan for my yeast infection on my back, only to find out that it wasn’t approved yet and hadn’t been ordered YET!! Day 4, and no meds yet again. Sigh!!! Monday evening, it started snowing and schools were canceling left and right, but not mine. We went to bed at our regular time in case they decided to have school. Brenda gets up at 5:30 on Tuesday and Thursdays to start my neb treatments, but she looked out the window (standing on her tip toes), turned on the computer and found out that school was closed. WOOHOO!!!! She quickly turned off the computer and went back to bed! :o)
Tuesday was a lazy day, although I did one psych paper (extra paper that is required) and got some extra reading done. Brenda went outside to take garbage out and it was icing. She took some pictures so I didn’t have to go out and look. Glad I was inside and not outside. That night before bed, my school had already delayed the opening for Wednesday until 11:30 (which meant no classes for me again) but I still had to get up early. I registered for classes for Spring Quarter (which start March 26th). Brenda woke me up at 6:50 so I would be online at 7am to register and to discover that they actually closed school for the second day in a row.
I am all registered! I am taking 4 classes or 16 credit hours next quarter. I am taking Biology of Diseases and the Lab, English 102: Gender and Film, Introduction to Rehabilitation, and Modern History: 19th and 20th century (which is online). I only have one class on Monday, Thursday and Friday and 2 classes on the other days. Only 1 day a week do I have to be up at 7am. The other days, my earliest class is at noon!! After getting registered, we went back to bed. Later in the day, Brenda went outside to discover that the lovely maintenance guys cleaned out behind our van, but piled the snow beside the van, where the lift is, so we wouldn’t have been able to get in. Brenda got us shoveled out with our little tiny portable shovel but felt good since most people were trying to get out with their ice scrapers. I also did my next psych paper and my next Disability paper which isn’t due for 2 weeks.
Thursday was sure hard to wake up. Two days off was great but sure does make it hard to wake up the next day. What a crappy day. After class we headed to the union to hand in my class schedule to disability services when Brenda’s phone rang. The results of my bone scan were in, and my right arm was fine, but my left jaw showed an increase in the uptake of radioactive dye. Hmm, now they want me to go see a dentist for my arm pain??? LOL!!! Brenda asked for more pain meds to which the doofy nurse asked why I needed pain meds? My jaw, or maybe my ear ache or my UTI (all of which don’t hurt!!). On the way back home, the nurse called again. Are you ready for this one….I can’t have more pain meds because although she told Brenda my arm was fine, oh guess what, it did show some inflammation. UGH! Brenda asked if she called back in 30 minutes, would my bone scan show something else that was originally fine but in actuality is not! We had them fax the results to Dr. Proskin so we can get the true answer!!! Dr. Mueller told me to take Aleve. Umm, Aleve is over the counter tablets. They don’t fit down the G-tube very well, you know. So, after Brenda spent a couple hours on the phone, Mueller called in a prescription for liquid Aleve, Brenda found a dentist who isn’t afraid of me, and scheduled another appt for Dr. Mikutis (ortho jerk but Brenda is going to have a few choice words for him). Then it was off to class.
Friday was a stressful day! I was soooo ready for the weekend, it just couldn’t get here fast enough. I got to class, well, after I got unstuck from the parking lot 3 times. After class, I couldn’t get out of the building because, gee whiz, they didn’t clean out in front of the door. The automatic door was froze shut and the other one only opened about 6 inches and my chair is just a tad wider than that. So, we walked through the building and out the other doors to a sidewalk of ice. Grrrr or in my case, whirring and spinning tires. Next to math class where the grounds crew put snow in front of the automatic doors!! NICE!!! Who needs to use those doors anyway!! After class, we were going to go eat at the Union, but the sidewalk that leads up to the Union was solid ice and I wasn’t going anywhere quickly, so we headed home. Guess what, they finally cleaned our parking lot out Friday afternoon. UGH. I’m just glad Brenda is here, otherwise I wouldn’t have been able to get out of the parking lot or in or out of buildings here because of the snow. Yes, I did send a note complaining about how horrible it was. After doing math homework, we headed out to run errands. First to mail a blanket out to a new family, then to Residence Services to pick up a package, then out to dinner (thanks dad and Betsy for the gift card to Olive Garden), then Meijers for groceries and my drugs. Well, of course, if anything could go wrong, it would, and it did. We went to the pharmacy….they had my Diflucan but not mixed up yet. They also sort of kind of had my liquid Aleve….they had 5 cc’s. Hmmm, half a dose for one afternoon. Did they order more, of course not?!!!??!!! Asked what we wanted to do about it. Brenda said a few choice words about why didn’t you order more, why ask now, etc. Soooo, the pharmacist called WalMart, who carries it, and said we could head over there to get it filled. We did get groceries and then headed back to where we were for dinner and went into Walmart to discover that the pharmacist from Meijers hadn’t called the prescription in yet. The pharmacist was on hold for 20 minutes trying to get our prescription. So I finally, after many headaches, got my hands on liquid Aleve. I started yesterday morning, I don’t start new stuff at night! The little dose did diddly for the pain so this morning I took the full dose, which made my stomach hurt. I also have my Diflucan after only a mere 8 days. SIGH!!
This weekend we stayed home. More snow yesterday. Next week will be busy. I have my Doppler ultrasound studies on Tuesday, Wednesday I am going to visit my grandma (prayers here for my grandma, she is getting her hip replaced Thursday), Thursday I have my appt with Dr. Mikutis. I only had 1 paper to write and a few chapters to read. I have a psych test on Friday, so I will be studying this weekend. I think that is it.
Quote for week:
No matter where you go or what you do, you live your entire life within the confines of your head. ~Terry Josephson
Saturday, February 10, 2007 12:17 AM CST
Hi everyone:
Another week has gone by and still no answers. Brenda and I have been laughing a lot this week. My view on life is that when things go wrong, you must find the humor in it or else you would spend the time crying; and this week, we would have been frozen to the ground with all that has been happening.
My week was interesting to say the least. Monday, it was bitter cold. We left for class and it was -2 with a wind chill of -10. We got in the van but our automatic doors wouldn’t shut. Brenda tried and tried but the dang doors wouldn’t shut at all, so she used the bungee cords and closed them. Unfortunately on the way to class, the cord slipped as we pulled into the parking lot, so the doors were swinging open. GRRRR! After class, the doors worked fine. We called the company and they came out after Brenda said there was no way we were driving down the interstate with doors that swing open at random! Brenda and I decided that the angels, along with Emma, were playing mind games with us. John, from MC Mobility couldn’t figure it out either. There was no set pattern, the doors would just stop working whenever they wanted to. We made an appt to go over to their shop, if the doors worked, on Wednesday.
Tuesday it was cold again and of course, the doors didn’t work after we got in the van. Don’t worry, Brenda figured out a system to keep the doors shut so I was in no danger of falling out while driving (just kidding!). There was snow forcasted for today so we decided to stay on campus so we wouldn’t lose our parking spot. After my English class, we headed to the union to solve a few problems. While deciding which classes I want to take for Spring Quarter, I noticed that my federal loan hadn’t come in and I couldn’t register until it was paid….so we had to pay $800 to get my registration up to date. Talk about stressful. It is hard enough to get classes you want, but if you don’t get to register due to money, makes it even more stressful. We went and ate lunch and had an interesting 2 hours. A girl from my class saw us and came over and talked at us for 2 solid hours. Brenda and I had the “deer in the headlight” look. I think we said maybe 20 words the whole time. Finally, at noon, Brenda saw a chance, and said we needed to go fix the van doors…so we headed back to the building where I have class and sat there. Thank god for tunnels!! I had class at 2:15pm and by then, it had been snowing for 3 hours. My teacher came in and cancelled class, so we headed out to the van to discover snow in the van. The doors still wouldn’t shut so we headed home and quickly prayed to Emma to shut the dang doors…it worked!!
Wednesday morning, classes were delayed 2 hrs so I got to sleep in until 8am. Woo hoo!! After I woke up, the phone rang. The hospital called to confirm my appt the following day. No, I had no idea I had an appt at 6:30am, but okay, whatever. I wrote to my English professor quickly, and let him know that I wouldn’t be in class and we headed to my math class where most students didn’t come. We did get about 5 inches of snow. Oh, of course the doors wouldn’t shut on the van today at all. When we got home, we called the van guys and said, sorry, so they headed over here and were going to wire tie the doors shut so we could get over to them. Of course, the doors worked then! So, we headed over to get the doors fixed and they were done in an hour! Back home and to bed early for us.
Thursday Brenda got up at 4:30 and I was awake by 4:45am (that is a.m. not afternoon)!! We loaded up the lift and me and were on our way at 6:00a.m. Kind of weird, pitch black outside, heading over for a doctor’s appointment. We arrived and waited a bit and they took us back to nuclear medicine. Had a major glitch when we arrived to find out that there was no way possible to get the lift under the micro-thin table. Luckily, Brenda figured out that if we went in from the head of the table and pulled as I was lowered, I would hit the table and could slide down. Sounds frightening and scary but it worked! Getting vein access was a challenge, but after 45 minutes, it was achieved after having 3 warming blankets and 4 heat packs on my hands. We tried my finger, but that blew and they got it in my thumb instead. After the initial scan, we were free until 11am. We went to the cafeteria and read some of my Disability book. I was tired so Brenda read to me, of course, people kept glaring at us, not because we were reading aloud but because we were reading a chapter on abortions. While there, Brenda’s phone rang. Dr. Mueller’s office called to tell me “bad news”. Brenda laughed at them because it was a duh, no kidding moment. If you didn’t know, I am the queen of yeast. I get it in my eyes, ears, mouth, nose, my skin, etc….well, gee whiz, guess what the culture of a pimple on my back grew…if you guessed yeast, you win! We went and picked up my prescription and went back for part two of the test. We started at 11:30 and I was done at 1pm. I think I was moved and transferred more in that 90 minutes than I had been ever since my spinal fusion. Up and down and back and forth. Anyway, loaded the van and headed home, I wish, and headed to class. I had trouble staying awake while watching bits and pieces of Rain Man. We headed over to the pharmacy to drop off my prescription, for my yeast problem and mailed 3 boxes and got home at 5:30. I quickly laid down, ate dinner and went to bed.
Friday, was sure hard to get up! UGH was the word. Psych and math class went by fairly quickly so that was good. Found out that I get to stay in my same apartment next year, filled out the paper work, saw my advisor so she could approve my classes for next quarter, got groceries, hit the pharmacy to find out that they couldn’t get my meds in until Monday, if insurance approves it, and came home.
Yes, I am exhausted and very sore. The test and the moving around has made me extremely sore. I am getting good use out of my heating pad and Tylenol with codeine this week. This weekend, I have to write only 4 papers and have a quiz this coming week. I have Doppler vein studies on Tuesday at the hospital again. I will be there from 11am until 4pm. Hope that there are no van problems or major gliches at the tests this week. Wednesday I register for classes, praying that I get what I want. I’ll let you know next week what I get and will be taking. Only 4 weeks left of this quarters classes, so time is flying by quickly. Hugs to everyone and prayers for those that are under the weather.
MJ
Quote/poem of the week:
Dream Your Dream
Every problem you face helps you to grow
For it strengthens your mind and your soul
Believe in the dreams you want to come true
And give life every chance to let them to
What matters is how many lives you touch
And to show others that you care that much
What really matters is who you are inside
For love is something you cannot hide
Follow your heart, and always have a dream
For life is but a fleeting moment it seems
Constantly work towards achieving your goal
And remember to take care of your heart and soul
Everybody has his or her own special song to sing
When you do then happiness is what you bring
Believe in the hope of tomorrow, for it holds the key
The promise of your dreams, and your destiny
~Parole Amica~
Thursday, February 8, 2007 5:18 PM EST
A few minor gliches, warming blankets, a very small needle, "don't drop me" comments, 7 hours later and one class later...We're home. We're going to eat a little something and probably go to bed. I will try to do a complete update this weekend. *yawns* I just wanted to let you know we're home and I am alive.
Wednesday, February 7, 6pm
Well I have good news...and bad news...We got the news, both, at 9 o'clock this morning. We weren't in psychology class because school was delayed until 10am because of the snow we got yesterday (5 inches).
Good news first, tomorrow I am going to have my bone scan. Bad news, for Brenda and I anyway, we have to be at the hospital by 6:30am! WAAAAAA! That means Brenda has to get up at 4:30am and I have to get up at 5:00. The tech informed Brenda that I will be injected with radioactive dye first then have a quick scan around 7am. At 10 they will do the full scan which will last until 11am. I am bit nervous because supposedly the table is really skinny, and as most of you know, I'm petrified of falling off tables. I'm sure it will be fine but I have a way of working myself up into a tizzy. Thank God I'm allowed to get off the table in between the scans.
Well I better get to bed! I have to be up in 11 hours! I probably won't update tomorrow but I will try to if I can. Please pray or think good thoughts that the scan will show something that we can deal with so I can get rid of this pain.
Quote for tomorrow:
Take up one idea. Make that one idea your life - think of it, dream of it, live on that idea. Let the brain, muscles, nerves, every part of your body, be full of that idea, and just leave every other idea alone. This is the way to success, that is way great spiritual giants are produced.” ~Swami
MJ
Sunday, February 4, 2007 9:12 AM CST
Hi all:
Sorry that there was no update this week after my doctor’s appointment. It’s been a rough week, but I’m half done with this quarter. I register for classes for spring quarter in 12 days, hard to believe that!
Anyway, Monday, I took my math test. Totally thought I bombed one question out of 10, but the teacher gave me full credit because I remembered the answer from class and just made a funky chart like she had done in class and it looked like I knew what I was doing. I ended up with a 95 out of 100. The average was 77 and she was excited about that!! I was so excited, not to mention that I was able to take it in class so it was pretty stress free. We had a quiz today (Friday) and got the question correct.
Today, I had a psych test. I am not sure how I did as I am in a lot of pain so who knows, I’ll find out next week. We do get to drop the lowest score so, we will see. I do have 6 extra credit points in the class already!
English is just becoming dreadful. Tuesday morning’s class was cancelled. We leave our apartment at 8am so we can get parking and he waited until 8:10 to cancel…really infuriates me to no end that he cancelled for the 3rd time! Thursday’s class, he refigured out our schedule and is having us write 4 papers this weekend to make up for him canceling class. UGH!
In Disability in Literature and Culture we had a quiz and finished the book. I really enjoyed the book, but boy does it make you think. The question is “Would you take a cure if you knew it would change who you are?” Makes you stop and think about life in a different way.
Anyway, the doctor! UGH is all that I can say! My appointment was at 3pm and we left the hospital after 6, closer to 6:30pm. Dr. Mueller checked me all over trying to convince me that I have a UTI or an earache, but no such luck. He was hoping for an easy answer to my fever and pain (although a pain in my arm doesn’t mean an ear infection in my book!!) Anyway, I ended up getting 6 X-rays (4 of my arm and 2 of my chest) and had more blood drawn. (Can you believe, they got blood on the first try again, on my knuckle again.) I have to go back for a bone scan, a Doppler ultrasound, and have to have a urinalysis. Can I say, I hate going to the doctor. Whatever Mueller did, I have been in extreme pain the past few days (hence, no update). Before I saw Mueller, I was only in excruciating pain when I had to move my arm but now it hurts all the time. I haven’t slept well the past few nights due to the pain, so Brenda made them prescribe some drugs today.
Anyway, this weekend will involve lots of papers. I have 4 in English, 1 in Psych, and I want to try to get 2 or 3 done in Disability in Literature and Culture (one of which is to evaluate a movie). I also, next week, have to evaluate a Stephen King movie and write a paper analyzing it. I picked The Green Mile. I watched it this afternoon to get an idea of what I’m doing. I have to take notes while watching it (at least 2 to 3 pages of notes). What a way to ruin a good movie. Anyway, I am almost ready for bed. Another long day! Hugs to everyone who is under the weather and needs some extra prayers. Talk to you next week.
MJ
Life is not about the end of the story where you put down the book with a satisfied smile.
It’s about all the chapters in between that make your heart race, bring a smile, and make you cry as you work your way, deliciously exhausted to the end.
Where you get to say… That was a great story!
Sunday, January 28, 2007 2:49 PM CST
Sorry for the long time between updates. Things have been busy and a bit stressful. Four weeks have gone by of class and it doesn’t really seem possible.
To summarize the past two weeks, my math class is going okay. Had a quiz and lots of homework, but only, on average, about 10 problems a day. I have a test Monday in Math. I did find out that I DON’T have to take the test in ODS (disability services) and talked to my teacher Friday. I must say, I’ve never seen a teacher looked more excited than me about the prospect of not having to take my test in ODS. LOL!! I’m slowly starting to understand her better, although some words just throw me for a loop.
Psychology class is okay too. Not too exciting but okay. I have my second test in there on Friday, Feb. 2nd. I have gotten back 2 of my papers and passed both and have received 4 extra credit points. I also visited with a girl in my class who uses a speak board, and it is fascinating watching her operate her Dynavox.
English class is rolling along quickly. I had, last time I wrote, finished writing my memoir paper twice, only to find out that I wrote my 2nd draft wrong. Who knew!! We had to start with a sentence my classmates liked and start the story from there. Grrr! Last Tuesday’s (1/16) class was also cancelled due to my teacher being sick. I rewrote my 3rd draft this weekend, which is due on Thursday. We started doing writing analysis by analyzing an article by Stephen King…boring!!!
Disability in Literature in Culture is going well. We have finished one book and are almost done with the 2nd book. I love this new book we are reading, “The Speed of Dark” by Elizabeth Moon. I have also been doing my service learning project for the Reeds and having fun.
As on my last update that Brenda did, I have been having lots of problems with my arm. I did see Dr. Mikutis, who seemed like a totally different doctor. He really could have cared less that I was in pain and was somewhat annoyed that we kept questioning him. Of course, my fevers became “part of my condition” again. Not sure which condition he is referring to this time! LOL!!! Brenda decided she was done with him and I have an appt on Tuesday with Dr. Mueller. It seems like I might have an infection in my arm, and if so, could mean long term (4 to 6 weeks) of antibiotics. GROSS!!! I just hope whatever it is, they figure it out and get it taken care of so I feel better soon. I did also seem the Dermatologist last week again. My back is pretty much healed. I don’t need to return to see them unless I need them. At least that part is fine and healed properly.
Besides class and doctor visits, on Thursday, we had a fire alarm at 8pm. Of course, it was the coldest night of the year. Thankfully, I was still up in my chair and Brenda threw my coat and new blanket over me and we sat in the van, while the fire department aired out the building from the smoke. I also had visitors Friday. A family from Ohio visited WSU for a tour. Their daughter is a junior and looking at attending WSU. It was great to meet them and tell them all the stuff that no one tells you before you sign up to come. LOL!! I have also been doing lots of website updating. My newest project is updating the Cole’s Quilts website, check it out if you have some time – www.our-sma-angels.com/colesquilts
This morning, Brenda changed my tubes, both of them. The J balloon had burst (oops, we have been forgetting to check lately), and it hurt a tiny bit to pull out but went in easy. The G tube was fine, I have granulation tissue again, but what else is new.
Brenda or I will try to update Tuesday night or Wednesday to let you know what happened with Dr. Mueller. Until then, big hugs to anyone who is under the weather and a big hooray to Hunter who is finally going home this week!
Quote for the week:
When I stand before God at the end of my life, I would hope that I would not have a single bit of talent left, and could say, "I used everything you gave me." ~Erma Bombeck
Thursday, January 25, 2007 11:15 PM CST
We are not really sure what is up with MJ. Ever since she hurt her arm
(Dec. 24th), it has been swelling up...since we saw the doctor on
January 3rd, she has been getting fevers every night...ranging from
100.8 to 102.2. The last X-ray from a week ago, showed nothing
definate, but was hard to see. The doc said it could show that she
broke the head of the humerus clear through, but unless we did a CAT
Scan or MRI, he wouldn't say for sure. I asked about an infection, and
the idiot said it was the dreaded "her condition" speech. Her lungs are
clear, SAT's are fine, she is on Tobi, but having fevers. The doc said
if it was an infection she wouldn't be able to move her arm....ummm,
duh, she doesn't move it. He also said it would hurt to move it,
ummmm....duh, it does hurt! Tuesday, before her dermatology appt, she
went and had blood drawn to check for an infection. Luckily they were
able to get enough and leave a bruise. Dr. Mueller, the pulmo, is going
to get us in next week to see him, since the Ortho doc really doesn't
seem interested. Who knows what is going on? MJ is still going to
classes, doing websites, sending blankets and so on, but is just not
herself the past few days. The pain is wearing on her.
Written by Brenda
Saturday, January 14, 2007 11:09 PM CST
Two weeks done of college and stress has become a roommate it seems. Have you ever had a week that you wish you could have fast forwarded through it?? This past week sure was one of them.
My birthday was Monday, which it, in itself was good, except for the 80 math problems. Tuesday I went to my English class, which is at 8:30am, only to not be able to get out of the van. The lift would not unfold. Brenda worked on it and after kicking it a few times, I was able to get out in time to spare for class. I went into class, got out papers 1, 2, and 3 and Brady came in the room. He collected our papers and informed us that class was cancelled but you had to write papers 4, 5, and 6 for Thursday. UGH!! I got up early in order to get to class after getting stuck in the van to find out that class was cancelled and to have to write 3 more papers. UGH again!! Tuesday afternoon’s class was okay.
Wednesday my psych class was cancelled so I got to sleep in some and got up and went to math class. If you remember how annoyed I was at having to do 80 dang math problems on Monday night, well, never try to understand a math teacher. When she said to do all the problems, she didn’t mean all of the problems, just all of the problems that were listed on a sheet of paper that she had given out the previous week. So, I only had to do 10 problems. GRRRRR! So after class I went to the pharmacy to get my pain meds (for my arm) filled. I dropped the prescription off and came home. I was working on homework when the pharmacy called to inform me that I had been dropped from dad’s insurance plan for meds since I just turned 18??? Hmm, I had thought I had turned 19, but apparently I was wrong! LOL! I called dad, who called the insurance and I was to be removed when I turned 18, but they are very slow!!! Luckily, my meds weren’t that expensive, so I was able to pay cash to get them filled. In order to be reinstated for insurance, I needed to fax a copy of my University Bill and class schedule to insurance.
Thursday I went to English class, with papers 4, 5, and 6 due only to find out that no, we didn’t need to hand them in yet, and to top it off, he handed back 1, 2, and 3 without grading them. He talked about our paper that is due Tuesday (1/16) and to also give us assignment 7, 8, and 9!! So, for this coming week, I have to write a 4 to 6 page paper twice plus write assignments 7, 8, and 9, just for one class!!! After class, I faxed my stuff to dad, and I now officially have my insurance again!
Friday, was another stressful day. Classes went fine, nothing too exciting, just long and drawn out. I did learn another word that sure had me questioning what the heck my math teacher was talking about. We were doing a math problem about salaries and she kept saying “Sorend”…I kept trying to figure out that the person in the problem was making 50 Sorend dollars. Sorend = thousand!!! Go figure! After class, we came home and got boxes ready to send out for B4SMA. I had 7 boxes ready to go out. We ate lunch and headed to the post office. When we got to the post office, well, nothing went right. The ground was uneven and bent the bottom of the lift so I couldn’t get out. Brenda called the local van company who informed her that “Today was not a good day, how about Tuesday!” Brenda quickly informed them that I was stuck in the van and no, today was not a good day. So instead of running our other errands we had to go get the van fixed. Yes, they got it fixed and I am out of the van!! We did go run errands. We went to Joann’s Fabric to get more blanket material and then we went to Office Depot. I bought a new computer, since it was actually cheaper than getting my old one fixed. After shopping, we went out for dinner at Olive Garden (thanks dad!). We sat next to the grumpiest and biggest complainers in the world. I would write the story out, but my update would be even longer!! LOL! Dinner was great!! Then we went to get groceries and home. I worked on the computer while Brenda started to set up my new computer.
This weekend, we stayed in all weekend. I had 7 papers to write for next week, so we didn’t go visit grandma June at all. Yesterday, I got 4 papers written and today I did 2 more. I only have one paper left to write tomorrow, but it isn’t due until Thursday. Tomorrow we have no classes due to the holiday, so I will have plenty of time. This week will be busy I’m sure. I have a quiz on Tuesday and a test on Friday. I also go back to see Dr. Mikutis for my arm. My arm still hurts. Every evening, it is swollen, red, and hot. Not sure what is going on, but hope the doc can give me an answer.
Hope everyone has a great week and that mine is less stressful! Big hugs to everyone!
Quotes of the week:
Don't underestimate the value of Doing Nothing, of just going along, listening to all the things you can't hear, and not bothering. ~Pooh's Little Instruction Book, inspired by A.A. Milne
Some of the secret joys of living are not found by rushing from point A to point B, but by inventing some imaginary letters along the way. ~Douglas Pagels, These Are the Gifts I'd Like to Give to You
MJ
Monday, January 8, 2007 8:36 PM CST
Hi all:
Just a quick note to thank everyone for all the wonderful birthday greetings, pictures, cards, phone calls, and even the video. I loved them all!
I did have class today from 9:45 until noon. My math class was the downside today, she gave us 80 problems of homework!! BLECH!!! Wasted 2 hours of my day doing math. After homework, we went and got boxes...I got presents from dad, Brenda, and myself (LOL). We got back and what a surprise I had...it was so NOT exciting. A dang ole' fire drill. Luckily, we had just come in so Brenda threw my coat over me and we went outside and sat in the van. It was 35 degrees here with 15 to 20 mph winds. BRRRRRR!
Tonite for dinner we had Bob Evans breakfast bowls and cake (note to self, the Warm Delights are okay, but real cake is sooo much better). Enjoy the pics of me from today and my Co-Edikit calendar page!
Sunday, January 7, 2007 7:58 PM CST
Hi Everyone,
Well, my first week of classes have passed by already. I am tired but doing okay. Unfortunately, I will be tired all quarter, the way I see it. Three of my classes are writing intensive, ie, lots of papers to write. I have about 40 papers to write in 10 weeks. I know you might be thinking, “What was I thinking?” Yes, I knew I would have lots to write, but based on what was available, everything I needed was writing intensive. I have 4 classes this quarter. I have 2 classes on Tuesday and Thursdays and 2 classes on Monday, Wednesday, and Fridays.
My English class should be pretty good. I was nervous about it because it is called “Steven King’s America”. But we just have to read King’s book “On Writing” none of the other ones. My teacher is hilarious. Picture Toby Keith, the country western singer and that is who is my teacher. Brady, could double for him seriously. He walked into the classroom and Brenda said (under her breath) redneck...He was wearing a baseball cap (which read "Vote for me, bro), a jean jacket, a polo-like shirt, jeans (ripped at the bottom), and to complete the outfit snake skin cowboy boots! Later in the class, he said and I quote "I am a recovering Irish redneck", which basically means he has a bad temper. To prove his point, when he walked in he was carrying a well worn baseball bat. He said that it is if you speak out of turn or while someone else is speaking he will and I quote from my syllabus "Be courteous and respectful to one another. If someone (a classmate or me) is talking, you’re not. I am intolerant of “chit-chat” and whispering. Consequences: Louisville Slugger-style discipline." (FYI: If you met him you would know he was a nice guy I can just tell) I am really looking forward to his class! I have 4 papers due in his class this coming week (I did 2 on Thursday already.)
I am also taking Disability in Literature and Culture. I am not really sure how I feel about this class. The teacher was “shocked” to say the least that out of 17 students, 4 are in wheelchairs. She talked about how we shouldn’t be afraid to say something when we talk that it might offend disabled people, but she acts that way. Should be interesting. This class is a service learning class along with being writing intensive. They also didn’t tell us that it is reading intensive too. (Thank goodness I started reading ahead of time as we have to read 300 page books in 10 days along with writing papers and other classes too). We have about 10 to 12 papers in this class. The service learning is that we have to do community service along with the regular class work. The list of places that were given were not really “disabled friendly” for me to help. I could volunteer with the university and help feed another student. Wouldn’t that be fun to see, me feeding someone when I can’t feed myself!! LOL! Anyway, I talked to my teacher and am going to help the Reed Family with the Miracle for Madison and Friends website and upcoming event.
Psychology class is better than last quarters already. I dreaded the first day, watching every time the door opened, hoping that my teacher from first quarter did not walk in. I was in luck!!! My teacher is pretty cool. He talks fast but that just means we get out early. This class is also writing intensive. We have 8 papers to write plus do 4 psych experiments or write 4 extra papers. Most of the experiments are not accessible, so I will probably do the extra papers just to get it done. We have 4 tests in class but no final, so that is good.
My last class is Mathematics in the Modern World. I have to have it for my major. It should be fairly easy. The teacher is Asian and she doesn’t have the best grasp of the English language so you really have to pay attention. In class the first day, she gave us a practice quiz. It was stuff that I did in 7th and 8th grade. She also thinks I’m a boy because of my short hair. She actually asked Brenda if I was sure that I was a girl. LOL! Friday’s class she handed the papers back and it took me a minute to realize she called my name. She pronounced Purk correctly but slaughtered Margaret. I became “Mark-a-rick”.
I did get in to see the ortho doctor on Thursday. Brenda called a different office who has the same doctors but different nurses on Tuesday. I saw Dr. Mikutis on Thursday morning. The area on my X-ray that was a concern is actually an old injury (at least a year old). He thinks he saw something around my shoulder area at the top of my arm, so I have to see him again in 2 weeks. He put my arm in a sling, but I had to quit wearing it. I could no longer regulate my body temperature with it on plus it wasn’t doing anything. Unfortunately, after seeing him, my arm now hurts like it did when I first injured it. He is a pretty cool doctor. He looks like a younger version of Brenda’s old ortho doctor, JP!
On Tuesday, I got a box from Pulmonetics, the company that makes my vent. I was featured on their company calendar again, I’m Miss June. I also got a Profile of Courage award from them. Wednesday, after class we went to Urbana to get my Toradol and see grandma. We went to the airport for dinner before heading back. Yesterday we went up again. We are celebrating my birthday!! I requested taco salad and cream cheese pie for dessert! My birthday is tomorrow and Brenda bought me a little cake for Monday to eat. I bought myself 4 shirts for my birthday. Brenda took a picture of me wearing one yesterday, so here it is. (Brenda got me the Co-Edikit calendar for Christmas and I LOVE their stuff!!!) Well, I guess that is it for now. My last update as an 18 year old!! LOL!! This week I have 4 papers due and have to read a book (already done) and a quiz. Check out pictures from the last week here – http://www.kodakgallery.com/I.jsp?c=a1z30nd.67knyiw5&x=0&y=87ijhd
Quote for the Week:
Happiness is an attitude. We either make ourselves miserable, or happy and strong. The amount of work is the same. ~Francesca Reigler
Sunday, December 31, 2006 2:22 PM CST
Hi everyone:
Sorry for the lack of updates. 2006 is ending and a new year is ready to begin. My last two weeks have been filled with fun and adventures, as always.
On the 19th, I saw the Dermatologist, who gave me Adaptic dressing to put on my back that is always opening up, and it clears it up. I have to keep using it or else it opens back up again. Oh well, it keeps it healed. Mr. Bear (check out his story at www.caringbridge.org/visit/mrbear) arrived to spend Christmas with the Purk family on the 21st and has had a great time. We made more and more cookies on last of the week. We made 3 more batches of Spritz cookies. I ate Mac and Cheese bites for the first time since I heard about them from Brenda’s nephews. I loved them. They have them at Sparky’s Pizza. I have been reading my Disability in Literature and Culture Books a lot, and have read 2 of the 4 and am ¼ done with the third one. Not too bad!!
On the 23rd, we went out looking at Christmas Lights and to see the Live Nativity at the church. On Christmas Eve, we had a big party. We opened presents and had a great dinner before going to Christmas Eve Services. Brenda brought my candle holder so I could have my own. I really enjoyed it and can’t wait to do it again next year.
Christmas morning was quiet. We slept in and enjoyed our morning. It was just Grandma June, Brenda and I. I got a new video camera and lots of clothes. Uncle Chris came over as did a friend of June’s.
Christmas night was when the adventure started. My arm was itching so Brenda looked at my arm and it was swollen and red and hot. We put ice on it and it started to hurt some. That night, my heart rate was up and my sats were down. Tuesday morning, my arm was really hurting, pretty bad. After a while, we went to the local ER to have it checked out. The X-Ray showed no broken bones, but there was a bump on my humerus that the docs wanted checked out by an orthopedic doctor. So, Wednesday morning, Brenda called Children’s Ortho Dept. UGH was her “nice” word of the day. The lady she talked to asked why they needed to see me since I can’t move much and why bother treating me. Brenda yelled at them and said that I was in pain and Motrin wasn’t doing anything! Children’s called back and said that the appointment wasn’t an emergency so they didn’t need to do anything but would call back to schedule an appt. They called back a third time and really irritated Brenda. The radiologist’s report showed that my deltoid tuberosity (see http://en.wikipedia.org/wiki/Deltoid_tuberosity) was pulling away from my humerus and taking part of the bone with it. It hasn’t completely came away yet, but they told Brenda that it is part of “my condition” whatever that is?!? They said that I could get into to see them sometime in February and that my pain wasn’t their concern. GRRRRR!
Thursday morning Brenda called Dr. Proskin. Thanks for your help. I started on Toradol and it has made a big difference. It controls the pain for most of the 6 hrs. We got a copy of my X-Ray and we laughed and decided that “my condition” that the ortho docs were referring to was that my bones were “gracile”. Gracile means thin and delicate. LOL!!! So my new condition is Gracile…..don’t you think I’m thin and delicate!
Friday, we hung around with my cousins and had fun and tortured my cousin, Andy (we love you!!!). Saturday, we headed back to the apartment. I am glad to be back and able to access the computer. I can’t believe my six week break is over and I start back to classes on Tuesday.
I’m just chilling out until Tuesday and working on website stuff. Check out all of our pictures at - http://www.kodakgallery.com/I.jsp?c=a1z30nd.4vov90al&x=0&y=o08zgo Wishing you and yours a happy and healthy new year!
Quote for the Week:
We will open the book. Its pages are blank. We are going to put words on them ourselves. The book is called Opportunity and its first chapter is New Year's Day. ~Edith Lovejoy Pierce
Saturday, December 2, 2006 12:32 AM CST
Hi everyone:
It is hard to believe time has gone by so quickly, but it is December 2nd, already. I have been home for 2 weeks and time has gone by quickly but yet it seems like I have been here in New York forever!
My time in New York has gone well. Brenda had a good time in Iowa and her and her mom made lots of blankets for B4SMA. I think they made around 15. One of Brenda's suitcases was clear full of blankets!! Brenda and her mom made me an early Christmas present. It is sooo cool. I would have a picture of it but, I’ll explain why I don’t in a minute!
I have almost finished my book for English class already but that has been delayed now too. For the most part, I really enjoyed it. There were parts that were pretty boring, but it did make me laugh! I will be starting the play of The Elephant Man next. I have seen the movie, which I really enjoyed so I'm sure I will like the book!
So you are probably wondering, what could have caused me not to be able to send you pictures and not to be able to finish my English book... well, my "old" computer died!!! It just shut off and won't turn back on! I'm hoping to be able to get it fixed, and keep all of my files, when I get back to Ohio. That computer has all the information on all of my fundraisers and websites and pictures on it.
I have kept busy doing websites for all my friends and also by adding new merchandise to my CafePress store. I really enjoy making a design that honors the kids and their families. Check it out, if you haven’t before - http://www.cafepress.com/b4sma/
My fundraiser for SMA Support is going well. We are over $700 but I sure would like to earn more. There is currently a sale on calendars at Cafe Press thru December 3rd so if you would like to go order a calendar or maybe a few for your friends or family, don't miss out on the sale going on right now. Every calendar helps!! Go to www.cafepress.com/b4sma/1826918 to order your calendar.
Not much else has been happening. I won't have much computer access in Ohio, especially if I don't get my old
computer fixed. If you need me, you know how to reach me! I will try to check e-mail maybe from the library, if
I can, or by sitting in grandma's driveway... her neighbors have wireless LOL! I will have my cell phone with me but
I doubt anyone will need me that badly. We'll be going back to the apartment to check e-mail during that time we
are at my grandma's house.
Prayers for Hunter P. that he will be able to come home before Christmas. Also prayers for Destiny S. to feel 100 ery soon! Also please pray for safe travels for Brenda and I back to Ohio!
Quote for the week:
“Celebrate the happiness that friends are always giving, make every day a holiday and celebrate just living!” - Amanda Bradley
MJ
Sunday, November 19, 2006 12:18 AM CST
Hi Everyone,
We are back in New York now, actually we've been back since late Thursday night. The driving was horrendous, to say the very least. It rained from Columbus, Ohio all the way to Somerset, Pennsylvania and then we had rain all the way from Somerset to home. Not just light rain either! It was like a dang hurricane in the middle of the country! We also drove through 3 tornado warnings and may I say that I NEVER want to do that again! As most of you know, we try to only drive 6 hours at the most...that didn't happen on Thursday. The normal 5.5 hours from Somerset to home took a whopping 9.5 hours! We saw lots of accidents along side of the road and are very thankful that we made it back safely.
Friday, Karen, my Occupational Therapist (OT), came over to work with me on my new computer. We're going to have 4 more sessions next week to work on my new computer and my Dragon Naturally Speaking.
Yesterday, Aunt ME-ME came down. She is going to come and "MJ-sit" on the 27th so Brenda was showing her how take my mask off, roll me, and all that good important stuff. We ended up reading through some of my old stories and Brenda is typing them into the computer. We were laughing so hard, I think my favorite word was "spectacular" for most of my 3rd and 4th grade years. Not sure what I am going to do with all of my stories but I enjoyed reading them, I was so hilarious.
Today, at 5pm Brenda is leaving for 9 days today. She is going home to see her family. So from now until the 28th Dad is running the show. He says we might get to go shopping, which would be fun. I'm also going to work on websites (hopefully my own, if I don't have to work on other kiddos). I'm going to read some of my books for Disability in Literature and Cultural. I already started "On Writing" by Stephen King for my English class. It's really funny.
I guess that's all the news that's fit to print. I'll update again soon...possibly before Thanksgiving. But if not, have a very happy Thanksgiving!
Please keep Hunter P in your prayers and pray for nursing care to come out and help him get home from the hospital for the holidays. Prayers for Nathan R who is in the hospital & Skylar S who is sick, hopefully she will be able to stay home & Sophia D who hurt her foot and is now getting sick. Sending good thoughts to Kristin & Dan on Cole's Angel day. Also for my friend Peg...Happy birthday Taylor! We will always remember you!
Quote for Today:
"Somehow I can't believe there are any heights that can't be scaled by a man who knows the secret of making dreams come true. This special secret, it seems to me, can be summarized in four C's. They are Curiosity, Confidence, Courage, and Constancy and the greatest of these is Confidence. When you believe a thing, believe it all the way, implicitly and unquestionably." ~ Walt Disney
MJ
PS Yes, it's time for Christmas music! We started on November 1st!
Sunday, November 12, 2006 5:39 PM CST
Hi everyone:
Can you believe it? My classes are over until January 2nd. Finals week is quickly approaching and I do not have a final. I do, however, have a unit test, so I can't complain. Brenda is packing and trying to get everything organized to head back to New York while I enjoy my last few days of high-speed internet access....yes, I head to home to NY to the dark ages of dial-up.
My last two weeks of class went well. My group project in Service and Society went okay...we were hampered by the heat of the room and me wanting to pass out from the heat but we survived...it is difficult when the room is 82 degrees and outside it is 42 degrees. Hopefully, I won't have class next quarter in the Honors building! Thursday and Friday here were just beautiful. Friday, it hit 71 degrees but Saturday morning I woke up to rain and 45 degrees. I wish it would stay in the 60's and 70's all year round.
I am heading back to New York on Wednesday morning. Please pray for decent traveling weather. Brenda is flying home next Sunday to get some time off. Also, remember to think good thoughts while I am at home and my health continues on it's good path. I have only been sick once and that was due to paint, so "knocking on wood and beating down the door here" pray it continues in that same path!! I have off from school until January 2nd, but I will be spending December in Ohio with Grandma. I did get my books for 3 of my 4 classes so I will be reading and reading during break. My Disability in Culture class has 4 books and my English class has one book to read. I have all of those books so I can read them. I was lucky in that I got 2 of them on the computer already, so I can read independently while Brenda is home.
As of now, all my Christmas shopping has been done, actually it was done last week. Everything is wrapped and ready to go home. There are 43 days left until Christmas....do you have all your shopping done??? It is not too late to order your new calendar for 2007 complete with hundreds of pictures of the most adorable kids you have ever seen on it. Please help support SMA kids by buying a calendar or two or more. Each calendar you buy can help get kids some vital equipment needed. The link to the site is http://www.cafepress.com/b4sma and directly to the calendar is http://www.cafepress.com/b4sma/1826918.
Please keep Sara K in your prayers this week, she woke up on her birthday with a cold, keep Hunter A in your prayers and pray for nursing care to come out and help him get home from the hospital for the holidays, and keep all my new friends in your prayers as their children were just diagnosed with SMA these past couple weeks.
Quotes of the week:
The purpose of life is not to be happy - but to matter, to be productive, to be useful, to have it make some difference that you have lived at all. ~Leo Rosten
Courage is the most important of all the virtues, because without courage you can't practice any other virtue consistently. You can practice any virtue erratically, but nothing consistently without courage. ~Maya Angelou
MJ
Monday, October 30, 2006 7:21 PM CST
Hi everyone:
Another week has gone by and I am another week closer to the end of the quarter. My week went fairly well, tired from all the work, but I survived. It seems unreal that I've been here for 8 weeks and time just flew right past me.
So, I finished my sociology paper on Monday night. It wasn't too hard, it was just long. It was basically 5 papers in one. Our teacher didn't tell us until Thursday, the 19th, what one paper was about and also gave us the length requirement. It "needed" to be a minimum of 15 pages. YIKES!!! I finished it Monday with a whopping 23 pages. It looked like a little book because we had to include the articles we got information from. So, my 4 articles (total about 50 pages) made my project look huge!
The rest of the week went flying by. Thursday, I had a test in sociology and another paper due on affirmative action in sociology. I also had to write a paper about a monk and a mountain for psychology that he changed his mind and decided we didn't need to write it after all. Don't you hate that!!! I also wrote another paper for my service and society class.
I had a great weekend. I spent Saturday with Grandma June. Sunday, I did not feel well, I thought I was getting sick, but it was only a big old plug. I did a couple extra treatments during the day yesterday, and today was all better.
Today, I ran errands. I went and picked up the last chapter of Sociology and asked about books for next quarter and can get one next week. I also got my flu shot today. They were giving them on campus, so I went and got it done, so I don't have to go to Children's on Wednesday.
I only have 4 days left of class, which equals about 6 papers and 1 test left. I already did my sociology paper that is due Thursday!!!! Not much else is happening...I did enjoy the 70 degree weather today and was glad I was out since tomorrow it is supposed to rain. Until later, everyone have a great day, Happy Halloween, and talk to you all later.
PS. The attached picture is me, getting ready for winter, wearing my new hat.
MJ
Friday, October 20, 2006 10:13 PM CDT
Hi everyone:
So, once again, it has been 2 weeks since my last update: where does the time go? I have had a good time with way too many papers to write, but what else is new. On Tuesday, October 10th, I found out that I had 12 (yes, you read that right) papers due by the 24th of October. I am happy to report that I only have one left to write by Tuesday!!! Almost done. I have 3 weeks left of class....where does the time go?
Last Thursday, Oct. 12th, they came to fix the van. They brought us a mini van with a rear entry ramp. It was so wonderful on campus and driving around...so much quicker to load and unload! We got our big van back on Monday. We have a new lift that is much more stable (still having a few issues with it, but it is so much safer.) But I do miss the mini van!!!! If only I had unlimited money...
This past Wednesday (10/18), I registered for my winter session classes. I am taking Mathematics in the Modern World, Psychology (part 2), Honors: Stephen King's America (English 101), and Disability in Literature & Culture. That is 16 credit hours. My class that I needed to take for Rehab, was full by 7:10am, so I decided to take Disability in Lit & Culture. Not too bad. Mon, Wed, and Fri I have class from 9:30 to 12 and Tues and Thurs I have classes at 8:30 to 10 and 2:15 to 4:00. Not bad at all! Still have to get up early every day, but I am adjusting!
Yesterday, I scheduled my flu shot for Nov. 1st. Brenda is not getting one, since she gets sick from them (can't have her getting sick). Today, I met grandma, aunt Jill, Zach and Pete at the mall and we went shopping and then grandma took us out to eat at Olive Garden. You have to try something....we got Smoked Mozzarella Fonduta!! IT WAS AWESOME!!!!! I also got popcorn at Popcorn Pizzazz! It is peanut butter popcorn. Yes, it is really good. The first bite was strange, but beware, it grows on you and is delicious!!
Tomorrow we are going apple picking and getting pumpkins!!! Brenda is going to make apple crisp!! (Am I making you hungry yet?) Well, that is about all for now. I promise to update at least once before the quarter is done (I can't guarantee much more than that as I have 2 tests, 8 to 10 more papers to do, and to read another book).
To view pictures, visit http://www.kodakgallery.com/Slideshow.jsp?mode=fromshare&Uc=a1z30nd.78q5wi1x&Uy=jg2sl4&Ux=0
On another note, B4SMA sent out its 300th blanket (well, actually, we sent out number 310 today). The SMA Support Calendar Sale (www.cafepress.com/b4sma) is going great. We have sold 113 calendars so far!! I am so excited since Christmas is still 2 months and 5 days away! Don't forget to order your calendar. They make awesome Christmas gifts for all your friends and families.
MJ
Sunday, October 8, 2006 9:02 PM CDT
Hi everyone:
Sorry for the long time between updates. I've been busy but doing okay. Well since my last update a lot has changed. Where do I begin!?!?!? Well, lets see, my vent was replaced and it is working pretty well, the battery doesn't want to seem to hold a charge, so I have to use my chair batteries if I need to breathe! We tried changing the cord but it didn't make a difference. The lift on the van has yet to be replaced but it still works, so no biggie there, but of course, yesterday, the "Check engine" light came on. Brenda went to Auto Zone to have a diagnostic test done, but our test outlet doesn't work (go figure!).
Anyway, last time I wrote I was doing a lot of thinking that I didn't mention to many people because it was a major decision I needed to make on my own. Wright State's computer science program involves a lot of hands on work and the programs that the department uses do not "play well" with my adapted equipment. It was hard to realize that majoring in Computer Science could, theoretically work, but would take more than 4 years and would require way too much stress and energy on me. I did a lot of searching and thinking and listening to my heart and decided to change my major! I also decided to drop precalculus class because I didn't need it for my major and it was causing a lot of physical stress on me. I have to type everything out in solving problems, showing all work. A normal problem, that I could dictate and solve in 2 minutes was taking me 20 to 30 minutes to type it out. The tests were physically draining and would wear me out to the point that I needed a nap after a quick 10 question test! So anyway, I am now a rehabilitation services major.
I met with my advisor last Monday and we talked about changing my major and what classes I should take in the Winter session. Next week, I will be registering for classes already...can you believe it? My first quarter is half over and I am making plans for Winter.
I have to take a class next quarter about my new major, but get this, it is only offered at one time .... it meets only on Tuesdays from 6:30pm till 9pm!!! YIKES!!! I am also taking my English 101 class but, yuck for me, the class I have to take is titled, "Stephen King's America"! Too bad that I don't like Stephen King...guess I better start liking him, huh? Haven't decided on the other two classes, but I have a week. LOL!!
This week, I have my scholarship luncheon on Wednesday, 2 papers due (one is almost done) and a service project on Saturday. We are going to build a house for Habitat for Humanity for my Service and Society class. I'm not sure what I can actually do and how it will work since it is supposed to be cold and I can almost bet that the house will NOT be accessible. Oh well, I will figure it out!
Other than that, I am still battling some sinus issues. Today I accomplished a lot. I needed to change my G tube, since it was leaking off and on, but decided to have Brenda change both my G tube and my J tube at the same time. So, first I took a shower, and then we changed both tubes with no medicine! Yes, I am really sore now, but I survived and both tubes were changed in less than 20 minutes (it took longer to get everything set up than to actually change them).
Well that is it for now. Brenda and I are driving home for Thanksgiving on the 15th and 16th of November. Brenda is going home, to Iowa, on the 19th and will stay until the 28th. Brenda and I will probably drive back to Ohio the first week in December and stay with Grandma and spend Christmas with my Ohio family!
Special prayers are heading out to Gavin's family and Maura's family on the loss of their children this past week. Their family's will be in our thoughts and prayers. Hugs going out to anyone else who is under the weather.
Quote for the week:
Take off the plastic and take off the mask! Don't be afraid to show the real you to everyone! ~ Eric Ellis
MJ
Wednesday, September 27, 2006 8:55 PM CDT
Hi Everyone
This update is from the past (almost) 2 weeks, sorry for the delay, but life has been crazy!!!! The update is written from Brenda's point of view as I am too tired to try to type it alllllll out!
Well, MJ has her first cold in college...not really a cold though. She
has been having bad allergies the past week and doing great with them, but Thursday (9/21) was a bad day. Her psychology class was moved to the new Joshi Center for class and when we got there, we quickly noticed that it was freshly painted (almost the whole building was). I notified the professor that MJ is allergic to paint fumes, who didn't seem to care until I said that MJ cannot stay in the class today as she will get sick.....well, too much exposure had already occurred....after 2 hrs, she had a sore throat, headache, slight fever and junk in her trunk! GRRR! She is started an antibiotic Friday morning (we can't start her at night as she gets sick at night). It also didn't help that Thursday, during her neb, we had a fire drill! We missed it....I got her up and in her chair and ready to go out, when it was over, so back down she went.
Sunday: 9/24: We got all the stuff out of her lungs and it is just in her head now. She went to class and the grocery Friday...we already have a routine down. Saturday we were off to get a table and chairs...if anyone came to visit, we had no furniture to sit on, so everyone would have to stand. We found a great folding table andchairs and then had dinner at Grandma June's.
Today, as in Sunday, we were doing homework because Miss MJ decided to procrastinate...We've already done Precalc (and MJ had a shower) and will do Sociology in a bit. Maybe MJ will send out a full report tonight, if she has time and energy. (Guess what, no energy there)
Yesterday, as in Tuesday, 9/26 MJ woke up feeling crappy, but decided that she was okay to go to class, so we went. In Sociology class, about halfway through, her alarm on her vent went off and freaked out the teacher....the teacher asked what was that, to which MJ said, "It's just me!", so the teacher was still freaking out, and asked if she needed to call 911 or stop the class or what! I said, its okay, and MJ told her to continue....(the battery we had just charged, was dead!) So, I fixed her vent and class went okay. After sociology and precalc we came home and MJ leaned back in her chair (because her butt hurt all day, the hip bone was sitting weird causing major pain and problems) and her vent alarmed again, so I changed the tubing and turned her vent on to which the vent started breathing on its own and alarming continuously!!! I sat on the floor and realized that it wasn't the tubing, and it wasn't the battery, but the vent was malfunctioning and broken!! (our 3rd vent since May with the same problem)......so, during our lunch hour (actually almost 2 hrs) I spent the time calling New Jersey to get a new vent sent out and putting MJ's bed vent onto her chair....Alas, I was starving since I didn't have time to eat! We quickly hurried out to the van to head to her Seminar and of course, there was NO PARKING!!!! So we had to park farther away on a downward slope, which almost caused MJ to roll off the lift in the up position......but we made it to class, in one piece, and we to watch a movie (Crash) but the projector wasn't working, so we moved rooms and were in a small elevator (Don't worry, it worked) with 7 other people, of which 5 were sick, and went to the new room. The movie went well, as we both had already seen it and left early so we could go get the van and head across campus to Psychology (back to the old room with no paint fumes...we drove over to psych, found a close parking space and went to unload...........and guess what happened???? Well, MJ got on the lift, and I started putting her down, when all of a sudden the lift jumped/bounced/boinged an inch and made a horrible noise but the lift continued down fine and went back up, (MJ was fine) but to our dismay, the motor arm that controls the fold mechanism of the lift was laying on the floor of the van!! So, I did what any normal person would do, pushed the lift into the van and shut the doors and went to class!!! We got into class and I called Tim (" hi tim, the vents busted, the van's busted, MJ's sick .. and I'm starving ... how are you ??? ") and said we had a slight problem (understatement of the century). After class, we went out to the van and I was able to make it work...I put a bungy cord to hold it together and got it to go up and down and the van doors to open and close and only had to manually fold/unfold the lift.... When we got home, I noticed it pulled 2 screws out of the lift and broke the metal plate that holds the arm to the lift...we permantely lost one screw...where it is, who knows, but we were able to get home safely!! After MJ laid down, she emailed Julie (thanks so much, they were a big help) and found someone locally who came over today and temporarily fixed the lift until we can get it in next week to get a brand new lift (MJ had outgrown the lift many moons ago). We also had a note on the door that said we had 3 boxes at the office(Heaven forbid they knock on the door when they leave a note)....so we went and met the van guy, and when he was done headed over to the office to get our 3 boxes (MJ's replacement vent, a shampoo tray, and a box of blankets from Janis). Tonight, the van is working (no guarantee if it will hold together), Tim is working with them to schedule a day for them to put in a new lift, since they have one in stock and to get a loaner van while they fix our van; MJ's new vent is back on her chair and ready to go, and we absolutely fell in love with the blankets that Janis and Joann made for B4SMA, and MJ's Psych paper is done!!! So, that was our day!! Fun, exciting and extremely stressful!!!!! One of those days, that makes you wish God didn't trust you so much to give you that much stuff to handle!!
MJ typing again...I will try to update more frequently so that updates aren't so overwhelming, LOL! Attached is a recent picture of me. Enjoy!
Quote of the Week:
Pandemonium did not reign; it poured. ~ John Hendrick Bangs
MJ
Saturday, September 16, 2006 3:06 PM CDT
Hi Everyone,
So many of you have e-mailed asking about this week so I figured the quickest way to get back to all of you is to write an update...Although there isn't much to tell.
Classes were good this week. I had 2 quizzes in Precalculus, I did pretty well. I have my first test next week, I will do it completely independently on the computer, so wish me luck! In SSS (Service and Society Seminar) we watched the first part of "Higher Learning". For those of you who haven't seen it, it is a really intense movie about racial tensions on a college campus. I can't wait to see the rest on Tuesday. My other classes were pretty mundane. Psychology seems to be getting to everyone! On Thursday I even brought a drink to class (I don't usually drink on campus)! Brenda almost fell asleep in psychology Thursday, along with everyone else. Our professor is used to teaching graduate level so he isn't used to us "lowly" freshmen. LOL Sociology isn't very exciting or boring, it just is...I think, along with most of the other kids, it is too early in the morning but I am getting used to it.
I did finally get highspeed internet, and will admit I'm addicted!! I love surfing the web and updating websites. I also got my deadbolt opener and am still waiting for the emergency evacuation sticker. *SIGH*
I did have an adventure yesterday. Don't worry, it's not medical! After class yesterday, we came home and did 2 loads of laundry and my math homework. Around 3:30pm we headed to Meijer (the grocery store, kind of like Super WalMart) and got groceries. We stopped at Boston Market for dinner and brought it home. I signed on to my school e-mail address to find "You have a package! Please bring your Picture ID with this slip to pick up your package in the Residence Services Office in the Community Center Building (under the WSU water tower). The office hours are 8:30am through 7:30pm, Monday through Friday. The office is closed holidays and weekends."...Well I wanted to get it before the weekend and it was already 6pm so Brenda and I loaded up and went across campus to the Residence Services Office...Well we got all the way over there only to find that my package had been picked up by the Village Office and that they would drop it off after 7pm. Grrrr So we drove back to the apartment. Brenda checked our voice mail to find a message from the Village Office saying to call if we wanted them to deliver it but they didn't leave a phone number! So we walked over to the Village Office (about 1 block) to pick up my package! That was my adventure!
Today has been a relaxing day...I've been listening to music through my head phones and messing around on the computer; being generally unproductive. Brenda has been watching the Hawkeyes vs. Cyclones game (YEAH HAWKS!!!! - they won 27 to 17 - WOOHOO!!!!) and folding laundry. Tomorrow we are heading to Grandma's for dinner and more laundry. I'm looking forward to that.
One more thing, before I go, I have to plug a fundraiser I am doing for SMA Support. Please support it, if you can!
I'm very proud to announce that the 2007 SMA Support Calendar is now available to purchase at the B4SMA store for $20 each. You can order the calendars directly from CafePress for $20, plus shipping and handling. The web site for the calendar is -- www.cafepress.com/b4sma/1826918
If you would like to visit the main B4SMA store web site, go to www.cafepress.com/b4sma (you can get to the calendar from here as well) be sure to check out our new sections, "Special Kids" and "Attitude...Do You Have It?" in Non B4SMA Merchandise section, while you're there.
For those of you that have never ordered from CafePress before, you can order online at the above address or by telephone at 1-877-809-1659 order #74691202
If you have any questions about ordering, please contact me at TWEETYROLL88@aol.com
You can order as many calendars as you want, there is no maximum...remember, they make great holiday gifts! Again, if you have any questions please contact me at the e-mail address above (TWEETYROLL88@aol.com). Thank you to all the family's who participated! I think it turned out great!
My Quote for the Week:
"Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, ambition inspired, and success achieved." ~Helen Keller
Brenda's Quote for the Week:
"Success has nothing to do with what you gain in life or accomplish for yourself. It's what you do for others." ~Danny Thomas
MJ
Sunday, September 10, 2006 7:55 PM CDT
Hi everyone:
Well, almost a full week has gone by and I have survived my first week of classes. Four days of classes and it went well. Tuesday and Thursday are my longest days, but I survived. I just don't have a lot of time during the week to do updates, so you will have to wait until the weekends.
Tuesday's classes went pretty quickly. I met all my teachers and they are all pretty good. My sociology class does not have a final at all, just 3 unit tests and a paper every week and one project. Not too bad. Precalculus is okay. Mostly review but hopefully, it will be an easy class. We have 12 quizzes, 3 tests and a final. This class is my biggest, there are maybe 35 kids in it. Tuesday afternoon, I have Service and Society Seminar...and I can tell you right now, it will be my favorite. We do service projects, watch movies, and talk. How cool is that?! We have to do a journal entry every week about what we did in class on Tuesday. Don't you wish, every class would be this cool!!! LOL!! After Seminar, I have 15 minutes to get to my next class, on the other side of the campus. It is Psychology. It is an okay class, but mostly lecture. Brenda has trouble staying awake for this class. She sits down and the professor starts talking and she starts to nod off - so I have to keep prodding her awake. I give her Pepsi so she stays awake. Tuesday's start at 8:30am and end at 6pm. I am up at 6:30am, hard to believe...but I am ready for bed by 10pm. Thursday classes are the same, except no Seminar class. Still makes for a long day though.
Monday, Wednesday, and Friday I also have precalculus class...we meet 5 days a week. Thankfully, I only have one class those days, so I can spend time during the day doing homework. I have done 3 papers and read 4 chapters for my classes, had a quiz, and did lots of homework for precalculus.
Okay, that is the schedule stuff. Now, onto the other stuff....Wednesday, the Medicine Shop came down and replaced my bed...yes, in less than a week, my bed quit working. It is all fixed and works great. My water delivery, and CaTs (the Internet people) appointment never showed up, so I had no water and no working internet connection!! SIGH!!! I did receive my mailbox key, only to find that it wouldn't open my mailbox...so there sat my mail even longer! Thursday afternoon, I got back from my 2 morning classes to find my water delivery in the hallway..poor Brenda had to haul all that water in and set it up. Friday, I had an appointment with Dr. Mueller at Children's in Dayton...only about 9 miles away. It went well and I sounded good. I have major post nasal drip, but are sure hoping it stays where it belongs and out of my lungs. After my appointment, we went to Meijers to get groceries again. Funny story of the week...At the store we had to buy a new fan, Brenda's was dying quickly or slowly, depends on how you look at it...Brenda's old desk top fan would take 30 minutes or more to turn on. You would turn it on and it would work up to spinning. So, at the store we looked for a new fan...of course, being the end of the season, there weren't many small desk top fans to choose from, so we had to get the only desk top fan they had...would you believe it was a glow in the dark fan...thankfully, the blades haven't glowed yet...I think it would be freaky to see the fan blades spinning all night long!
Yesterday, we went to Urbana to visit grandma again and Aunt Jill and the boys. Uncle Chris's family came out for dinner too, so I saw the whole family! It is strange to be here in the fall, it is the first time I have been in Ohio in the fall and it just seems so strange. We did laundry at grandma's yesterday so everything is clean.
In case you were wondering, we ate on campus twice this week. Chick Fil'A and also the sub sandwich place on campus. Both were good. Friday night after groceries, we stopped at Arby's for their loaded potato bites...delicious!!!
Last night we finally got our mailbox key and it works!! WOOHOO!!! I also got my checks and ATM card (but no PIN number yet). We also we to have gotten PCA keys (sent us 5) and a deadbolt remote. We got those, but they don't work. The keys fit into the door, but won't turn. SIGH!!! Big bummer. Oh, well, we can get into the mailbox, so for now I'm happy.
Tomorrow, after class, I have an appt at the bank and at the Engineering/Computer Science office. Plus, CaTs, the computer people, are to be coming to get me set up so I no longer have to use dial up!! Cross your fingers!!! Until next weekend, hugs and prayers for all my friends who are under the weather. Have a great week everyone.
Quote of the week:
“I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” ~Maya Angelou quote
And Brenda's Quote of the week:
“A professor is someone who talks in someone else's sleep.” ~W.H. Auden
MJ
Monday, September 4, 2006 6:06 PM CDT
Hi Everyone:
I promised pictures and here they are! http://www.kodakgallery.com/I.jsp?c=a1z30nd.aa0vo6d1&x=0&y=-3bo36l
Enjoy!
Hi Everyone,
I am here in my apartment, watching the MDA telethon and relaxing. I have had a pretty good few days (always hit some speed bumps along the way, but what else is new).
Backing up a bit, last Saturday, Aunt MeMe came over just in time to help load the last box. Loading the vans wasn't as bad as it sounded and luckily it was nice weather (a few rain drops) so the move went quick.
The trip went well....rained almost the whole way, off and on, but it isn't a trip until it rains. It seemed weird, leaving home and knowing that I won't be back until Thanksgiving. We got to Ohio on Monday at 3pm and relaxed. Tuesday and Wednesday, we ran errands and got things done. I set up my bank account, got my books, got a TV and VCR/DVD and last minute things. Wednesday afternoon, we loaded the vans back up with the stuff that was sent to grandma's house.
Thursday morning, we headed to Fairborn to move in. We were a tad slow and our helpers beat us to the apartment. Special thanks go out to Emma and Nick's Grandma, Nicole, Julie and Emma and Nick's Grandpa. You sure made the move-in very quickly. You guys rock!!!! By 1pm, all the boxes were moved in and lots of boxes were already unloaded. Betsy went out to get lunch for us and after lunch (Wendy's) and more unpacking, Dad, Betsy and I went to Meijer's for groceries while Brenda unpacked more (and boy, did she ever unpack). Dad and Betsy left at 6ish and Brenda and I ran back to Meijer's for stuff we forgot to get. Of course, speed bump number one, happened Thursday night. Brenda left the jug of water (for my formula) on the kitchen counter over night. Friday morning, we woke up to a counter and the floor full of water. The jug had a slow leak which ended up EVERYWHERE!!!! UGH!!!
Friday, I had a meeting at ODS and then a Peer Group/Learning Community meeting. I met a lot of the kids in three of my classes. We talked and played games. It was a good way to meet new people. I also talked to ODS Technology to help get my computer set up....my ethernet is not connecting and I have to use Dial-Up. They are going to come over next week to help me get set up! After my meetings, I went back to Meijers to get more water and dinner. We had Arby's for dinner.
Saturday I spent the day at Grandma June's. I got my haircut and tipped again! Thanks WWAJ!!! You are the best! We hung out and it was good to relax before the big day arrives. We headed home at 9pm. It was a long day but good.
Sunday, I worked on websites while Brenda unpacked some more stuff. All that I had going on was Freshman Convocation at the Nutter Center. It was okay and only lasted an hour. Brenda and I also went to Target and Meijers again to get a stool for Brenda to sit on near my bed and Pepsi. I also ate my first dinner at my apartment. During the end of dinner, I noticed my tube had disconnected (speed bump #2) and was completely drenched. So, I got my first shower last night. I also don't have my key to my mailbox (speed bump #3) so I can't see if I got any mail yet!!! BOO HOO!!! I did get my voice mail set up....so if anyone calls, if the voice mail picks up, it will ask you which mailbox you want, 91 or 92. I am mailbox 91 so you will press 1 when it prompts you too. So, my mailbox is 91 1713. I can finally get in to pick up voice mail now.
Today I am relaxing and enjoying my last day off. I have been reading one of my psychology books and it is going okay. I am half done!!! I will get pictures soon, I promise! Well, that is it for now. Congrats to all my friends who appeared on the telethon this weekend...wish I could have seen you all!!
Quote for Today:
"What is life? It is the flash of a firefly in the night. It is the breath of a buffalo in the wintertime. It is the little shadow which runs across the grass and loses itself in the sunset." ~Crowfoot, Blackfoot warrior and orator
MJ
Friday, September 1, 2006 10:03 PM CDT
Hi Everyone,
First post from my NEW college apartment! I'm still going through e-mail so if you haven't heard from me, I'm not ignoring you. I'm sure my internet use will sporadic the next few weeks so please bear with me.
No pictures yet. Hopefully we'll get some tomorrow or Monday. The apartment is smaller than I thought but I like it. I met most of the people in 3 of my classes today and I even like them...LOL I couldn't/can't get on through the highspeed internet yet but hope to have that resolved soon. I'll write more soon with details about the move etc.
MJ
Friday, August 25, 2006 6:55 PM CDT
Hi everyone:
Sorry that I haven't updated since camping. We have been soooo busy packing, that I just haven't had time.
Camping was great, always an adventure...but it went well. Friday morning, we loaded up the van and met MeMe, Lynne, and Shaun and drove up to the US Navy Submarine Force Museum (http://www.ussnautilus.org/) in Groton, CT. We walked around and looked all over the museum and outside. I liked the submarine "doll house" exhibit. You could push a button and a specific room would light up in a small scale submarine like the kitchen, bedrooms, etc. It was pretty cool. After spending time there, we headed to Camp Harkness. We arrived a little after 4pm and unloaded the van and got settled in. At 7pm, we headed to Papa Gino's and met Peg for dinner. We had a blast and laughed so hard. After dinner we went back to camp and lit a campfire and sat and talked with Armand and Debby for awhile before heading to bed. When we were getting ready, my battery on my food pump died, which is no big deal, as I just plug it in and off I go, but for some reason, my charger was dead! It would not charge the pump and with no charge, I could not be fed. At midnight, Brenda called Millenium (thankfully, Uncle Louie was on call) and said "HELP!!!" I am fed 24 hrs a day, and after 90 minutes I was feeling shaky and gross. We were trying to do gravity feeds but it wouldn't run consistantly, so it would either stop or run too fast, making me feel ill. At 1am, Lou called back and said that a pump was going to be delivered to camp that night. Brenda stayed up until 3am making sure my food was going in and thanks to Emma and Taylor, my food ran in at a proper rate all night. At 5am, the pump arrived, (thanks Peg, for going to get it at the gate!!!). We slept until 10am. What a long night!!!
Saturday, the weather was beautiful!! We headed down to the beach and hung out. We walked around, ate lunch and just had fun. Jen, Harry, Josh, Daniel, and Ager came and hung out for the day! Joshua loved going down the slide and swinging on the swings and spinning around and around. After dinner, that night, we had another campfire and hung out!
Sunday, we slept in again! We were a tad slow getting down to the beach. We had a CT/NE FSMA Picnic scheduled at 10am, but we didn't make it to the beach till 11:30 or so!! LOL!! Many families showed up and it was great to meet so many new people!! We had a busy day of swinging, playing, walking, kite flying, and all around fun. Most everyone left by 6pm, so after cleaning up we headed back to the cabins and rested for a bit. Peg headed home to avoid Monday morning traffic. We lit candles again to pray for all the angels. We had to cut it short because a strong storm rolled through.
Monday morning, we packed and cleaned up the cabin and loaded the van. We left Camp Harkness around 1pm and headed to Madison, CT for lunch. We ate at Lenny and Joe's. It was pretty good! I loved their fries, although it would have been awesome with sour cream on them! LOL!! We arrived home at 5pm and unloaded the van. I worked on websites while Brenda was unpacking.
Check out our pictures from Camp Harkness:
http://www.kodakgallery.com/I.jsp?c=a1z30nd.3eyzhjud&x=0&y=822kkf
Tuesday and Wednesday, we were stuck at home yet again. The rear tire was making funny noises at camp on Monday, so dad took the van in to get it looked at. The bearings were failing, so all the bearings were replaced, so hopefully, we won't have any more problems. August, from Millenium, came by to switch my vent out as it was saying there was a Hardware Fault the past two nights.
Yesterday, we went to the Palisades Mall to meet grandmother one last time before heading out! We ate lunch at a Mexican restaurtant (I had a naked burrito), went to Target, and went to the bookstore to get a new book to read for Psychology class (Zen and the Art of Motorcycle Maintenance). I got an email Wednesday night from my Psych professor that he had added 3 more books to read for class....sigh!! Last night, Brenda was busy packing and getting more stuff ready.
Today, Brenda was running around like crazy!!! She is getting stressed out and packing and thinking too hard. I took my last shower at home and got more stuff packed. It is hard to believe that it is almost time to head to college.
Tomorrow, we are getting a rental uhaul-like van and packing my van, the moving van, and dad's minivan loaded up. Aunt MeMe is coming to help us. I can't believe that Sunday morning, I am heading off to start a new phase of my life in Ohio. I am very excited and can't wait, but yet it seems so surreal, that college is actually here. I will arrive at Grandma's house Monday afternoon. I will have time to get my meds, get things picked up, opening my bank account before I move in on Thursday morning. Thanks to Beth, Beth, Julie, and friends for volunteering to come help me unload the van on Thursday! This will be my last update from New York! I will update sometime in the beginning of September. I move in August 31st but I'm sure I will be busy for a few days and classes start on Sept. 5th. So until then, hugs to everyone!!! Prayers going out to Grace's and Alicia's families, after the loss of their daughters. Prayers also heading out to all my friends who are under the weather and recovering (Logan, Jennifer, Charlie, Sean, and Annah) and to Lindsey and her family in the upcoming move!
Quote for today:
This is the begining of a new day.
God has given me this day to use as I will.
I can waste it or use it for good, but what
I do today is important because I am exhchanging a day of my life.
When tomorrow comes this day will be gone forever, leaving behind in it's place something that I have traded for it. I want it to be a gain and not loss, good and not evil, SUCCESS and not failure, in order that I shall not regret the price that I have paid for it.
-Samuel F. Pugh
MJ
Friday, August 18, 2006 7:10 AM CDT
Please pray for Grace C's family. Grace passed away at 10:30pm last night. Many prayers for Grace's family...
For Grace
By: Peg Bailey
As a gentle breeze sweetly touches my cheek -- I will remember
As I watch a butterfly flirt with a flower -- I will remember
As a blue bird flies high -- I will remember
As I recall your beautiful smile – I will remember
When I think of your gorgeous blonde locks – I will remember
When I think of the weekend in VA Beach-I will remember your sweet smile, your precious mommy and daddy and you, their sweet golden angel
Run free Grace, fly like the wind
Give my best bud the hugest hug from me
Taylor and Paul will take care of you
Until we meet again
Know you are loved
Know you are a precious gift from God, Miss Grace
and you and your beautiful soul will be
missed more than I can ever express.
Hi Everyone:
Can you believe it is the middle of August already...where has the time gone? I have been busy but not busy, if that makes sense. I am up to doing 20 different websites and truly loving it (thanks Laura).
Anyway, last weekend was the 3rd Annual Candelighting for SMA and I lit my candles. People from all over the country lit candles on Saturday evening. It was beautiful.
Sunday, we went to the container store to do last minute college shopping. I ran into my 5th grade English and Math teacher, Mrs. Cole, there and talked to her for awhile. It was great to see her again. Then we went to Whole Foods, where I got Silk for this weekend. Of course, after Whole Foods, we just HAD to go to the Cheesecake Factory for dinner....unfortunately, they didn't have Baked Potato Soup, which was sad, but I did have Cheesecake with Hot Fudge Sauce on it. (DELICIOUS!!!)
Monday, was a busy day. I worked on a few websites and then headed over to the Palisades Mall. Brenda and I got last minute college stuff and also things for camping. We also went to Joann's Fabrics, but get this, we didn't buy any fabric...and it didn't even storm!! For dinner, we met Aunt Linny!! We ate at Cheeburger Cheeburger. Would you believe we sat there and talked and talked and the next thing you knew, they were trying to close the restaurant on us....OOPS!!! We left the mall at 10pm!!! We had a blast talking and just having fun!
Tuesday, I worked on many websites while Brenda packed. We were going to go see Dr. Proskin, but Brenda slept in and didn't wake up in time to get an appointment. Brenda has been packing everything up and my room sure looks different.
Yesterday, we did go see Dr. Proskin to get new prescriptions written and to say goodbye :o( . I must say that the past 3 and 1/2 years have been stress free in relationship to the medical aspect of my care. Dr. Proskin has been the best doctor ever!!!! After my appointment, we went to the grocery store. Time to get food for camping!!! I am so excited for camping! My last hurrah of the summer before college starts. We did get lots of tasty treats for this weekend.
Today, I took a shower after having a bit of a stressful start of the day. Just seemed like things were going against me before my shower. I called WSU to ask about my parking permit and found out that it wasn't ordered, even though we paid the bill....so I ordered a new one....GRRR!! Then found out that VESID hadn't paid my tuition bill yet and money is due Sunday.....of course, my counselor is out of the office until Tuesday....and if you haven't paid by Sunday, your registration is cancelled.....ARRRGGGHHH!!! All is well now. I am caught up on websites for now and the van is partially packed and ready to go.
Tomorrow we leave for Camp Harkness. We are leaving early and stopping for lunch and then going to Groton to the USS Nautilus and Submarine Force Museum to see the Nautilus ("The world's first nuclear-powered submarine and the first boat to sail to the North Pole.") at dock and visit the Sub Museum. I will be back on Monday sometime! (Yes, the wheels are packed ME-ME!)
Also before I leave, I thought I would give you my new address and phone number....but remember, I do not move in until August 31st!!! If you want it, please e-mail me!
My cell phone will be coming with me and I will still have the same number. I will also be keeping this email address, so you can still get a hold of me.
Attached is a picture of me with my pillow from a friend...Made especially for me! Thanks Candy, I LOVE it!
Special prayers are heading out to my little buddy, Grace, who is in the hospital. Big prayers are heading out to my special buddy, Logan, who is having surgery tomorrow. I will be praying for you and can't wait till you are home again. Prayers also for Annah and Eliah and hope you both get home soon!!
Quote for Today:
Every time you state what you want or believe, you're the first to hear it. It's a message to both you and others about what you think is possible. Don't put a ceiling on yourself.
Oprah Winfrey
MJ
Thursday, August 10, 2006 3:48 PM CDT
Hi Everyone,
Sorry for the delay between updates, things have been crazy here as you can well imagine! It seems unreal that three weeks from today I will be moved into my new apartment in preparing to start college. Since I started high school I have been praying that this time would hurry up and get here, and now I just wish it would slow down!
Since my last update we were pretty much stuck at home. On the 25th of July we went and visited my friend Ethan and his family. It was lots of fun! But when we arrived home and got out of the van we noticed the rear passenger side tier was smoking and smelled terrible! On Wednesday, July 26th, my Dad took the van into the shop to get it fixed. Originally the auto body shop thought the axle seal was broken but it turned out that the axle was actually bent! So needless to say we were without a van until Monday! Boy did we get cabin fever. On Tuesday I went to another OT appointment to get my hands splints smoothed. Yesterday, we went to Wal-Mart to pick up my glasses! Attached are a few pictures of me wearing them, I can finally see! LOL
This weekend we're going shopping for some last-minute college stuff at the Container Store. Next week I also plan on going back to Target and a final visit to Dr. Proskin before going camping with the gang (Lynne, Shaun, Aunt Meme, Peg, Joshua, Jennifer, Harry, Daniel, Mark, Ariana, Kathy, Becky, Armand, Debbie, etc. etc. etc.) at Camp Harkness! We're really looking forward to it!
I guess that's all for now! Prayers for everyone who needs them!
Quotes for today:
How did it get so late so soon?
It's night before it's afternoon.
December is here before it's June.
My goodness how the time has flewn.
How did it get so late so soon?
~Dr. Seuss
And
What lies behind us and what lies before us are tiny matters compared to what lies within us. ~Ralph Waldo Emerson
MJ
Sunday, July 30, 2006 2:05 PM CDT
Hi Everyone,
Let's see, a lot has happened since I last updated, although nothing quite as exciting as my previous updates!
We arrived home from the hotel on July 21st around 1 o'clock P. M. Before going home, we went to Home Depot and the grocery store. When we got home I went on the computer (surprise surprise) while Brenda unpacked. Around 4:30 p.m., my dad called and asked why I wasn't answering my cell phone. We were totally confused, my cell phone hadn't been ringing... although that would be because I LOST MY CELL PHONE! Brenda searched the house and van calling my cell phone to see if it would ring! At last she called my cell phone and someone answered... we had lost it at the grocery store! Luckily for me, someone returned it to Customer Service and the Customer Service person answered my cell phone. So we loaded up again, and went and got my cell phone. I am now looking into getting a different holder for my cell phone so this doesn't happen again!
Around 7 p.m., Aunt Meme arrived for our “girls night in”. It was lots of fun and we stayed up until 1 a.m.! We watched one movie, “the Brooke Ellison story”, and a TV show that Aunt Meme had taped because our friend, Armand, was on it with his wife, Debbie. Armand has SMA, like I do. It was a great show!
Saturday, Sunday and Monday were pretty uneventful. I spent most of the day working on web site's.
On Tuesday, we went to the Palisades Mall to meet up with my grandmother, Aunt Maureen, and cousin Samantha. We had lots of fun! We ate lunch at TGI Fridays. We shopped at Target, JoAnn fabrics, and some clothing store. It was good to see grandmother, Aunt Maureen, and Sam before I head off to college!
On Wednesday, Brenda and I spent the day pulling off pictures for two of the web sites I do. 36 discs later the day was over!
Thursday... well that could be an update in itself! I have been wanting to get my vision checked before I head off to college. Brenda usually gets her eyes checked at the Wal-Mart an hour from here and I had been with her last time she went and it was accessible... but, there's always a but, they have recently renovated and are no longer able to accommodate people in wheelchairs. *sigh* but Lucky for me, Brenda remembered that there was a vision place in the mall close by! So we headed over to the mall, after shopping at Wal-Mart and JoAnn fabrics (do you believe we didn't buy ANYTHING at JoAnn fabrics??). Unfortunately, the LensCrafters didn’t have any appointments available. So we headed home, very disappointed. When we arrived home we found three large boxes... for those of you who don't know, At the end of June, I got notified that I have to go through medication by mail program. Anyway, most of the meds were right. My Robinul came in tablets (with the instructions to take one tablet, twice a day via Gtube)....hmmm, how does that work!! We were shorted on the Nystatin powder and my carnitor and way way over stocked on saline. Normally, we get 2 boxes of 100 saline bullets a month (or whenever needed). It usually takes us 4 to 6 months for 2 boxes but we got a boat load of them.... we got 54 boxes of saline or 5400 vials of saline! Brenda spent over two hours on the phone with the company discussing the reason why Robinul tablets won't work for me. Unfortunately, she got disconnected before we got anything fixed. While she was on the home phone, I used my cell phone to try to make an appointment at the eye doctor at my pediatrician's office. They couldn't see me until August 14th! So, when Brenda got disconnected result of from the mail pharmacy, she called all around town looking for an accessible eye doctor. The reason most eye doctors aren't accessible is because the new equipment is all attached to the chair. Since I am unable to transfer from my chair, it is difficult to find someone who can accommodate my needs. Finally at 4:30 p.m. we found a local doctor who hadn't purchased all of the new equipment and was able to examine my eyes, except for the glaucoma test. So at 4:45 p.m. we headed to the eye doctor. It was a very long day!
On Friday, we went back to Wal-Mart to get my eyeglass prescription filled. I picked out some awesome black/silver Flex Fit frames and will pick them up sometime next week! Brenda and I had lunch at Applebee's... it was pretty scary! We hadn't been to that Applebee's in over a year and yet the waitress remembered that we ordered chicken strips and mashed potatoes! LOL Other than that our Friday was pretty uneventful!
Yesterday was pretty laid-back. I don't even really remember what we did all day.
Although it's only 2:30 p.m., today has been pretty eventful already! And I only woke up at 10:30 a.m.! Yesterday we were supposed to change my Jtube but, you know me, I put things off. So this morning when I got up, Brenda asked “do you want to change your jtube now or wait until later?”... I was “gutsy” and decided to do it right away, even though dad was at church still. So Brenda got all set up and we changed my tube! It went very smoothly, which I was surprised about! It didn't even really hurt!
So that's all the news from here! On Monday, tomorrow, I'm going to get my hands splints fixed yet again for hopefully the last time. And on Tuesday I'm going to visit my friend, Ethan, again. So far that's all I'm doing next week! Prayers for all my friends!
Quote for today (I couldn’t choose between these 2):
Don't live down to expectations. Go out there and do something remarkable. ~Wendy Wasserstein
and
Excellence is not a skill. It is an attitude. ~Ralph Marston
MJ
Friday, July 21, 2006 1:01 PM CDT
Yesterday, we didn't do a whole lot....I worked on websites (I have been working on Aidan's, Autumn's, and the Miracle for Madison and Friends website). Brenda made 2 blankets last night (sending one out Saturday to a 7 year old from Canada). We also finished ALL of the thank you's from graduation! Whew!!! I think we wrote out over 130 thank yous! Yikes!!! We were still in the hotel last even though our power came on last night. We are heading home around noon, after stopping for some basic groceries. We lost EVERYTHING!!! So, we are going home to NO FOOD! Bummer.
Aunt MeMe is coming over tonight to the house for a "girls night in" and we are calling out for pizza and pasta from Frank's Pizza. We are going to watch movies too!!! Can't wait. That is it for now. That's all from the hotel!! No more highspeed internet!
MJ
Wednesday, July 19, 2006 11:30 AM CDT
No, I didn't go riding in any more elevators... this is an adventure of a different type.
Last night, around 11 p.m., we were having a wicked thunderstorm. I was talking to my friend Kim, and told her I would be back online after the thunderstorm was over... Little did I know.
Since I couldn't use the computer, I decided to get ready for bed and wait the thunderstorm out. So Brenda laid me down and started getting me ready for bed. She rolled me over, and boom, the lights went out! That's right, it was 11: 30 p.m. I was stuck on my side and my mattress was quickly deflating. My dad and Betsy were already in bed, asleep. So Brenda had to go wake them up to help get me in a somewhat comfortable position. Alas little did I know, there's no finding a comfortable position on a deflated mattress. :-(
My dad decided to call the electric company, and find out how long it would be before we had power again. All he got were recordings... Betsy called around to hotels to see if we could get a room if necessary. Meanwhile Brenda and I decided to kill time by reading my summer homework, "In the Eagle's Shadow"... talk about a bedtime story! It was mindnumbing, especially at midnight! My dad, after about an hour and a half, still couldn't get a real person at the electric company. So I decided I would try to wait it out. By 2 a.m. I decided I could no longer take laying on my deflated mattress, and asked dad and Brenda to get a regular mattress for me. The problem was my wonderful bed, that can do just about anything, won't accomplish much without electricity. You see, in order to get my lift (what we use to get me in and out of bed/chair) won't fit underneath my bed unless it is completely lowered to the ground... it won't do that without electricity! :-( Lucky for me, my dad is pretty strong. He lifted my bed, just enough, so that Brenda could get my left underneath. Within a few minutes we had me all settled back in my bed again. At 3 a.m. my battery for ventilator (I use it at night to help me breathe) died! Don't worry, as most of you know, Brenda is always prepared. She had another battery ready for me, which lasted until I decided to get up this morning.
All night long I saw lights driving up and down our street. Our neighborhood has lost a lot of trees, including two from our yard. Thank goodness it didn't hit our or anyone else's house! At 7:30 a.m. I decided to get up (VERY early for me) as my Gtube had been bothering me for a while. When I woke up Brenda told me that dad had booked a hotel for us, since we still didn't have any electricity. I told Brenda that my Gtube was bothering me, so we decided to change it. I know what you're thinking, "why would you do that in the dark???"... don't worry so much, everything went smoothly. But, there's always a "but" isn't there, we discovered that I have a cellulitis infection. :-( Luckily it is easily cleared up with antibiotics for 10 days.
After we got the van loaded up, we drove to the hotel. As usual, nothing is ever easy. We tried three different routes before we got here! So many trees were down and lots of power outages (according to the local news, 25,000 homes are still without power in our county). So here I sit at the hotel, the Courtyard Marriott, enjoying the high-speed Internet and charging my food pump! I will update again, when/if we get home!
Prayers for all my buddies who aren't doing well or are in the hospital, especially Eliah!
Quote for today:
No day is so bad it can't be fixed with a nap. ~Carrie Snow
MJ
Saturday, July 15, 2006 6:18 PM CDT
Hi everyone:
I had been thinking about writing an update but really haven't had anything to say except it is hot out....but I spoke too soon!! You know me, life is always an adventure!! LOL!!
Well, this afternoon, Brenda and I went to get our haircuts, while dad and Betsy went to exchange my crocs (from graduation) to a different color. After haircuts, we all went to the Target in White Plains. After driving around the block 3 times, we found a handicap parking place on street level. Can I say, I HATE parking garages that are NOT accessible for conversion vans?? So we went to Target, where I spent money and more money!! I got a 10 ff coupon from Target (now that my honeymoon is over, LOL) and bought a bunch of stuff on my wedding/graduation list. The place where Target is located at, is a maze...you go up one elevator, through the halls, go to another elevator and go down...but you can't take the cart out of the store, so we had to carry all of our purchases out through the maze. We then went to eat lunch at Applebee's. It was delicious, of course! Dad asked if we wanted to go to Barnes and Noble, so Brenda and I headed that way, while dad paid the bill. They have a street enterance with a lift to the store. Brenda and I waited while the store employee got the key. Brenda and I got it and we went a foot or so up and guess what happened....remember, it is always an adventure!!! If you guessed that the lift quit working, you are absolutely correct. Now, Brenda and I are in a "closet" with no windows and NO lights....scared yet?? Now, add on top of that an alarm inside the elevator that is screeching (just in case we didn't know that the lift/elevator was no longer working). The guy from the store asks Brenda to push the button, but there are no lights so who can find a button...Before the guy went to get help, he yelled to us, "Don't go anywhere, I am going for help!!" Well, DUH, big red truck, "where the heck would we go!!!!????!!!!" Brenda told him not to worry, we would stay put!! LOL!!! The store called the fire department who came to rescue me!!! The guy from the store, ripped the back door off of the "closet" so we had light and air. Thank God, because it shut the alarm off! My ears are still ringing!! Anyway, the fire department arrived (Fire Rescue 88, good sign) and wanted to lift me out. Sorry, not going to happen. They were going to first use a backboard to use as a ramp so I could drive out, but the backboard was too narrow...then how about a ladder to drive down on.....then someone remembered that the apartment towers had a small ramp, so that was brought over. They had to put it sideways so it would fit, but it rocked side to side.....LOL!! There was an inch drop off at the bottom but I made it out. Dad said it was only 10 minutes, but boy did it feel longer, much longer. We walked around, after they told us that there was a direct entry on the other side of the building (wish I would have known that in the beginning). We walked around so we could continue shopping and the manager gave me a $25 gift card for all my troubles. After a couple minutes, I decided I had had enough and Brenda and I went outside...we were done and I wanted to go home and lay down and rest my ears!! LOL!
So anyway, life in the Purk household is always an adventure. We are home and I survived being stuck in an elevator shaft for the second time in my life. It was an interesting day and quite the adventure, one I wish I didn't have to have!!
Quote for the day:
"Things are never so bad they can't be made worse." ~From the movie The African Queen
MJ
Tuesday, July 11, 2006 6:58 PM CDT
Hi Everyone,
I had my appointment with VESID today. The appointment was mostly about what they will and will not pay for, for me to attend college. The good news is, actually great news, they will pay $14,000 of the $16,000 I have left to pay! $10,000 of that is my room and board, well actually just my room. The $4000 is what it would cost for me to attend a local school. The reason they will pay for my room is because if I were living in state they would have to pay for transportation, which adds up to about the same amount. The other good news is that they will pay Brenda for 40 hours a week...This is my in class time. Isn't that awesome!?!?!? Oh, and I forgot to mention they will also pay for my books, which we all know adds up to a lot of money. Before VESID arrived today, actually not VESID Kevin (my counselor's name), I looked to see what my books with cost. My precalculus book, is $124! Ouch! My other books aren't too expensive, but that's just this quarter. I'm sure as I move into the more advanced classes my books will become more expensive.
MJ
Thursday, July 6, 2006 8:05 PM CDT
Hi Everyone:
I'm back from a fun-filled, relaxing week in Virginia Beach. I had such a great time that I'm sad that it went sooo fast. We left Tuesday morning, after Grandma June and Aunt Claudia left for the airport.
We drove through rain almost the whole way down to Dumfries, VA where we stayed overnight. The trip should have taken 5 hrs, but due to the heavy rain (tropical monsoon type weather) and rush hour traffic in Washington, DC....it took us 7 hrs. UGH!! It was a long, long day. After we checked into the hotel, we headed over to Cracker Barrel to get dinner to bring back to the hotel. Of course, being the type of day it was, it took them almost an hour to get our food ready! After dinner Janis and Brenda unloaded the van while I watched country music videos.
The next morning, I was up and ready to go at 7am. I asked Brenda to fix my legs at 7am and asked what time it was....once I knew it was 7, I was ready to go and wanted everyone to wake up too. We loaded the van and went to Cracker Barrel for breakfast, since check-in time at the hotel wasn't until 3pm. Our trip down was filled with sun, thank goodness!! After driving through Richmond, VA, our van was hit by a rock which cracked the front window. As we drove toward Virginia Beach, the crack kept growing until it was almost 18 inches long. Luckily, we didn't hit much traffic and made it to Virginia Beach at 3pm. We had to wait for a bus to unload but once it was time to unload, we started (of course, they didn't have the paperwork that my dad had faxed over twice, so we had to wait even longer) but once everything was ready, we headed to our room. We basically unloaded the van and then hit the boardwalk. We decided that we were hungry and feeling tired and not brave to experiment, we settled for Subway for dinner. We went for a walk after dinner and went down onto the beach. I called my grandma so she could hear the waves. It was very humid but wonderful to hear the ocean again. I think we went to bed around midnight!
Thursday morning, I slept in (until 10am). We hung out trying to get things figured out about the van window. I also called my friend Stacy, and we arranged a time for her to come over. After 2 hours on the phone, and many phone calls later, it was decided that it would be fine to travel with the cracked windshield and it would get fixed after we got home. Stacy, and her sons, Zeke, and Clayton came by with water for us and a visit. Zeke and Clayton grew so much since last year, when we met them at the SMA Gathering. We had a great visit and it was so good to see them all again, although we all miss Angel Morgan! After that, we headed out again. I found new crocs, in hot pink!!! They are so comfy! We walked all afternoon until it started raining. We went and got the umbrella and continued walking. Brenda wanted to go back to the room and after we got up to the room, it started thundering and lightening so the beach was closed. After a brief thunderstorm, a beautiful rainbow appeared over the ocean. It was huge....you could see both ends. We laughed about how stupid people are. The beach patrol would drive up and down the beach, ordering people out of the water, due to lightening, and as soon as the patrol left, they would head back into the water. Just stupid, if you ask me!!! For dinner, we ate in the restaurant attached to the hotel, the Seaside Galley. It was very good. It was a quiet yet relaxing day. We did get some shopping done and walked about 3 miles (Wednesday we walked 4 miles).
Friday morning, we woke up early to go eat breakfast at the breakfast buffet across the street. It was very good. We decided to go to the Lynnhaven Mall by trolley. Boy, oh boy!! What an adventure!!!! The trolley's start at 10am so we were at the stop at 9:45. At 10:15, the trolley came by and we got out our money to get on. The driver, James, put down the lift (part way) and it got stuck! Yes, stuck!!! The lift refused to go down or up or anything!! GRRRR!!! So we waited, in the hot sun....and waited.....and waited. Finally at 11:30, a new trolley showed up to replace the broken one. Yes, the lift worked!! It was funny, though, because James was an hour behind schedule and okayed it with his supervisor to head straight to the mall with us on the trolley. The other people on the trolley, were told to get on the trolley behind us and ride while Brenda, Janis and I got a trolley ride to the mall (no stops) on the interstate. It was quite funny. We just had to laugh! We finally made it to the mall at noon!!! We went shopping and had fun. I got an embroidered hat (with a dragonfly), a book, CD (Trace Adkins), and a DVD (Hotel Rwanda). We ate a little snack of cookies, Fiesta potatoes, and Chicken nuggets. James told us that 3pm, he would be the driver back to Atlantic Avenue, so we headed to the trolley stop. James showed up at 3 and of course, would you believe, the lift wouldn't go down all the way again. James played with it and jumped on it a couple of times and then it worked. I got on along with a full trolley of people. This time, we had to do all the stops. James dropped us off across the street from the hotel, and of course, after I got on the lift, it wouldn't lower all the way. I kept having to go up and down and up and down until the third time, I got to the ground! We headed back to our room to relax and charge my batteries. The Saville's called and we planned to meet them for dinner. While we were relaxing, Brenda called the transit company to make a complaint about the condition of the lifts and to give a recommendation to James for being so helpful. In case you were wondering, we did get a free ride both ways!! After 90 minutes of charging, we headed back outside to sit in the fresh air and wait. The Saville's met us on the boardwalk. We headed to the 18th Street Cafe and Grill for dinner. We sat outside since it was a wonderful evening. After dinner, we walked to the amusement park and watched while Clayton and Zeke went on some of the rides. It was a lot of fun to just hang out and laugh. We then went for a walk until the Saville's had to leave. We kept walking along the boardwalk after saying our goodbye's to the Saville's. After that we went out on the fishing pier. It was weird, I could feel the waves moving the pier. At first, Brenda and Janis couldn't feel it. It was cool to see the waves crashing the beach from the backside of the waves. It was so peaceful except for the fishy smell (LOL!!). I called grandma again so she could hear the waves.
Saturday morning, we got up early again for breakfast at Log Cabin Pancake House (no, we didn't eat pancakes). It was SO hot outside! After breakfast, we went shopping. Our hotel was on 13th street and we hit most every store on Atlantic Avenue from 13th street to 20th street!!! Shop-a-holics are us!!!! I found a tshirt and a sweatshirt (yes, a sweatshirt in 90 weather). When we were exhausted, we headed to the Candy Kitchen again to buy fudge. We decided to wait so our fudge wouldn't melt!!! We went in and I got a fourth of a pound of chocolate mint fudge and a fourth of a pound of peanut butter fudge. Brenda went to pay when the cashiertold us that we won a free pound of fudge. Yes, a whole pound of fudge. So, we got 4 different flavors. We got chocolate peanut butter, vanilla swirl, rocky road, and orange creamsicle. We quickly headed back to the hotel to cool down and eat fudge!! I charged my chair while we were relaxing, eating fudge, and drinking lemonade! We all (even Brenda) liked the orange creamsicle!! We decided that Sunday, we needed to go back for more!!! LOL!!! After that, we called out for Cal'z for dinner. Brenda and Janis had a pizza and I had a calzone! It was delicious! After dinner, we went for another long walk, up and down the boardwalk! It cooled off so our nightly walk wasn't too bad. We walked 7 miles, yes 7 miles today despite being over 90 degrees! I slept good that night!!
Sunday morning woke up to be hotter than Saturday. After a breakfast and the Log Cabin Pancake House again (still didn't eat Pancakes), we headed the other way down Atlantic Avenue. We didn't make it that far, it was even hotter than Saturday. We did shop at the Christmas Mouse, and found cool ornaments and I found a couple beautiful butterflies. We made it to 7th street before we turned around and headed back to the room to cool down. At one point, with the sun beating down on us, my thermometer on my chair, read 104 degrees!!! And I didn't get sunburnt, thanks to my sunscreen! We went back to the room, drank lemonade and ate fudge again!!! LOL!! I charged my batteries again (my food pump would only last 10 hours and was a major drag.). After it started to cool down, we went downstairs and ate at the Seaside Galley again. It was delicious!!! We headed out for a walk and got more fudge (a pound of orange creamsicle) and then took our fudge back to the room and then headed south this time. Every night, we always headed north but decided to change our ways. We walked from 14th street all the way down to the beginning of the boardwalk. We watched people surfing and turned to look at how tiny the pier looked. What a long way we walked. We headed our way back (it was a mile each way). We rested for awhile on the boardwalk and ate a funnel cake and drank a lemonade. We had to head to the room for a bit (to clean off) and then headed out to the pier again! We headed to the beach for a last look (and call to grandma) and walked north for awhile. Brenda and Janis got tired and after we hit 20th street so we turned around and headed back to the room around 10:30pm. We ended up walking 7 miles again!! Janis and Brenda's feet were sure sore and were tired from walking. Brenda slept with me so she didn't have to walk over (10 feet) to my bed during the night!! LOL!!! What a long day, but fun!!
Monday was a sad day. We had to get up early and pack the van! How sad! It was hot again, so I stayed in the room while Brenda and Janis packed the van. We checked out and hit the road at 11am. We didn't really hit any major traffic and we ended up stopping in Fredricksburg at a Super WalMart. We bought fabric to make 5 fleece blankets! We shopped for over an hour before we hit the road for the last 30 minutes of travel to Dumfries, VA. We had the same room as on our first stop. After we checked in, we headed for dinner at Cracker Barrel since we were all hungry. After dinner, we unloaded the van, made 3 blankets, checked email, went for a walk to try out my new finger light, and had hot chocolate. It was a good but sad day!
Happy 4th of July Day!! Brenda woke us up early so we could beat the traffic and hopefully the weather. Brenda and Janis ate breakfast at the hotel ( I couldn't eat that early) and loaded the van. At 9:15 we were on the road home (boo hoo!) We made it through Washington DC in 30 minutes with NO RAIN and got stuck in traffic 10 miles from Maryland due to a major accident. Not sure what happened but life flight came. We sat on the interstate for an hour. What made it worse, was that the air conditioner wasn't working up to par so sitting in the van at 95 degrees was NOT FUN! After an hour, we got going again and the van cooled down to 88 degrees (ugh!). We drove straight through (only stopped in Jersey for gas) and made it home at 3pm. After going through graduation presents that came and unloading the van, I laid down in bed and relaxed and checked email! It sure felt good to be home, but I did miss the sound of the ocean!
Yesterday, we did laundry, unpacked, and relaxed. I checked email and finished up a few things. Mostly we just relaxed. I slept in until 10 and enjoyed staying down in bed.
Today, Janis flew home (thanks so much for coming to Virginia Beach again with us). I took a shower and Brenda got my meds ordered on a delivery plan so we will be all set for college. I ordered towels for college today along with a shower curtain. Tomorrow, the van window is finally getting fixed. That is all for now.
All the pictures can be seen by clicking the link here: http://www2.snapfish.com/thumbnailshare/AlbumID=45784871/a=21328174/t_=21328174
Enjoy them, we did have a great time!!!
Quote of the day:
In everyone's life, at some time, our inner fire goes out. It is then burst into flame by an encounter with another human being. We should all be thankful for those people who rekindle the inner spirit. ~Albert Schweitzer
MJ
Monday, June 26, 2006 8:07 PM CDT
Hi Everyone,
I have had a busy weekend and few days prior to the weekend. I'm going to divide my update into days so it is less confusing.
Thursday, June 22nd:
Today was a day of prayers, praying for no rain!!! Watching the news showed rain coming in but it all disappeared so the weather was good. Before we left for the school, I had surprise visitors. I knew my friend, Peg, was coming down, but didn't know that Peg was bringing others down with her. Connor, Karen, and Owen Reilly showed up for graduation and my party. I was shocked speechless, not a common occurrence. My Florida relatives showed up too before we headed to the school. Besides my family, the Reilly's, and Peg, Shaun, Lynne, and MeMe were there too along with friends from the area. There was a slight breeze but it was sure hot and humid. I think when graduation started it was still 88 degrees. I compromised for graduation, as I wanted to walk down the hill with the kids and I sat outside waiting for everyone. It was a pretty good ceremony, lasted about 2 hours to get through everyone's diplomas.
Here are pictures from Graduation - if you don't have AOL, click the View As Guest button - Graduation Photos
Friday, June 23:
What an exciting day! I got up and we quickly packed and headed to the hotel to check in. We met up with the Reilly's and Peg. I hung out with them while Brenda unloaded the van. We stayed in a suite that had a large living/dining room separating the two bedrooms. Grandma and Aunt Claudia stayed in one room and Brenda and I were in the other room. It was a beautiful room. Our room had a large canopy bed surrounded on three sides by white sheer curtains. We hung out, called out for dinner at Frank's and just had fun. Constance, from Ohio, showed up after dinner and we hung out laughing and telling stories. Finally, we headed to bed around 11:30.
Saturday, June 24th:
Today was PARTY DAY!!! I was up at 9am ready to go. Everyone was going to go back to our house for breakfast but we were all lazing around so we called for room service for breakfast! After breakfast, I went to check out the party room, which was partially decorated. I sent Brenda back to the room to get my quilt to display(from Nell Baldwin with the help of many SMA Families), along with my awards and my special memory book, in the room. People started showing up and the party started. Everyone had name tags because Aunt MeMe wanted them. My dad had put little names on the tags. For example, my Uncle Jon's tag said, Jon Purk, "Weird Uncle". My cousin JR's said, Jeremy Caldwell, "Cousin Germy" (yes, that is what I call him and he is sooo mad at me about it!!). There were so many people that I didn't have time to eat any food (except half a meatball). There were a few other SMA Families at the party. Besides Peg and the Reilly's, Shaun, Lynne, and Aunt MeMe came down, along with the Tromontano's, and Ethan's grandma's were there. It was good to see everyone again!! After the party was slowing down, my cousin Kendra and cousin Heather collected all the remaining balloons and attached them to my chair. We then took tons of pictures of me, with cousins, aunts, uncles, etc. I was seeing spots. LOL!! After pictures were done, we separated the balloons and all the smaller ones, we gave to everyone who wanted to go outside with us and do a balloon release. We released over 100 balloons. It rained the whole day except when we went outside. As soon as all the balloons were out of sight, it started raining again. It was really cool. After that, we headed down to the room where I opened all my gifts and cards. My cousin Levi, helped me open them all, and he was so funny. With every gift, he would say, "Oh my goodness, it is beautiful...what is it!?" LOL!!! I got so many cool gifts. For dinner, we had delivery again. We just hung out and laughed at stories. We headed to bed at 11 as everyone was tired and worn out!
Here are pictures from Friday and Saturday - again if you don't have AOL, click the View As Guest button -
Party Pictures
Sunday, June 25th:
We had to get up and going. Checkout was at noon, but we had to be out by 11 as Janis, Brenda's mom was flying in at noon. My cousin, Nate, showed up to help load the van and check out. We were out and had everything loaded at 11:15am. We picked up Janis at the airport and were home at 12:30. We hung out all afternoon and evening with the rest of my family that hadn't left yet. Mostly it was a relaxing day with lots of family time! I laid down early (9pm) to rest a bit.
Monday, June 26th:
Today, I slept in until 10am. I stayed in bed to relax since tomorrow is traveling day. Brenda packed while I uploaded pictures. (I hope the pictures work since Kodak wasn't letting me upload pictures today.) At noon, we watched the news and saw that Seaford, DE is under water. We called the hotel and they are closed!!! We quickly looked around and planned an alternative route and found a different hotel room!! Instead of the scenic route, we are going through Baltimore and DC. We are staying in Dumfries, VA. I am so excited to head back to Virginia Beach again! We leave in the morning and will be back on July 4th. I will not have much access while gone, if any, so stay tuned for more details.
Thanks for everyone who was there for my party and who sent me beautiful cards and gifts. I truly appreciate all the love that was included in it. I love all of you and even though, you weren't there with me, I did feel the love of everyone!
Quote for Today:
God grant me the serenity to accept the people I cannot change, the courage to change the one I can, and the wisdom to know it's me. ~Author Unknown
MJ
Thursday, June 22, 2006 9:57 AM CDT
I'm graduating today! WOOHOO!!!!
Please, if you pray, pray for NO rain from 3pm (eastern time) until 10pm!
Thanks!
MJ
Monday, June 19, 2006 10:02 PM CDT
Hi everyone:
I wasn't going to post until after graduation, but I couldn't wait to share my news. Today in the mail, I got a package from New York City, the Tribecka Film Festival. I was confused, wondering what the heck did I order! I opened the box to find.....another box!! GRRR! Inside was a letter, that read,:
Dear Margaret: (that is MJ to most of you)
On behalf of all of us at Volvo, I'd like to congratulate you on your selection as a Volvo for life Awards semifinalist!
This is a truly extraordinary achievement. Your nomination was chosen from over 4,300 sumbissions of exceptional quality. Your story stood out at the top of all those nomminations - for the conscience, care, and character you have shown toward your community, and for your willingness to go above and beyond the call of duty to help others in need.
The enclosed certificate of merit recognizes your outstanding contribution. You are receiving this award because you are a true hero - not just to our judges, your nominator, and your community...but to us at Volvo as well. I am proud to have learned of your achievements through the Volvo for life Awards - and I commend the extraordinary work that so clearly makes you a hero...to us, and to everyone who is touched by your efforts.
Sincerely,
Anne Belec
President and CEO
Volvo Cars of North America, LLC
That is my good news of the day!! Attached is a picture of me and my certificate...that weighs a few pounds....
Quote of the day:
Don't be afraid to give your best to what seemingly are small jobs. Every time you conquer one it makes you that much stronger. If you do the little jobs well, the big ones will tend to take care of themselves. ~Dale Carnegie
MJ
Thursday, June 15, 2006 3:49 PM CDT
Hi Everyone:
I'm sorry I haven't updated since we went camping. Not too much has been going on here, just counting down the days to graduation...7 days left! WOOHOO
On the 10th, we went to my friend, Ethan's, 1st birthday party! It was lots of fun, especially to see Ethan and his adoring family! I can't wait to see them all again at my party on the 24th.
Speaking of my party, we're up to 120 people coming! Isn't that awesome??!! The people coming range from my dad's side of the family, to my mom's side, to my SMA family, to school teachers, to old friends. I'm very excited if you couldn't tell!
Yesterday I had 2 shots for college, meningitis and pneumonia. I also had an EKG heart test. Everything went well! I don't have any pain from the shots which is awesome. Tomorrow we are going shopping for B4SMA at Wal-Mart and JoAnn's Fabrics.
For the upcoming week, we have so much going on! Monday, I have graduation practice at 3pm. Tuesday, I have an appointment to fix my hand splints. Wednesday, my grandma and aunt get here. Thursday, is graduation at 6:30. Friday, we all go "move into" the hotel and Saturday is the party!
Attached are 2 recent photos of me. I think the titles are self explanatory. ;)
We're praying for the Swanson family and Aguilar family, who both lost children to SMA recently.
Quote for Today:
"People are often unreasonable, illogical, and self-centered;
Forgive them anyway.
If you are kind, people may accuse you of selfish, ulterior motives;
Be kind anyway.
If you are successful, you will win some false friends and some true enemies;
Succeed anyway.
If you are honest and frank, people may cheat you;
Be honest and frank anyway.
What you spend years building, someone could destroy overnight;
Build anyway.
If you find serenity and happiness, they may be jealous;
Be happy anyway.
The good you do today, people will often forget tomorrow;
Do good anyway.
Give the world the best you have and it may just never be enough;
Give the world the best you have anyway.
You see, in the final analysis, it's all between you and God;
It was never between you and them anyway." ~Mother Teresa
Love,
MJ
Thursday, June 8, 2006 11:58 AM CDT
Hi everyone:
We had a great but soggy weekend camping. Good thing it is an "indoor camping" as it rained almost the whole weekend. Camp Hemlocks is a family camping weekend, like a respite weekend, where families from all over can come, get together, hang out and relax. There are counselors there that can help you and your family but overall, it is just fun and relaxing. This year, there were 5 families, including Brenda and I, who are part of the CT Chapter of SMA. It has almost become the SMA Family Weekend. Besides us, Shaun's family, Emma Hope's family, Arianna's family, and Joshua's family were there.
We arrived Friday, late like usual, since we were having a "Big Mac Attack" on the way and had to have our McDonald's fix!!! Of course, it was raining but lots of the counselors pitched in, so everything was unloaded quickly (some to the wrong room, so it was a search for our right stuff)! After a welcome, everyone went swimming. I do not swim anymore, but I go hang out and watch everyone and Brenda takes pictures. Brenda took over 200 pictures, so I hope you have time to sit and look at them. Bookmark the site if you have to, because it will take a while. The pictures can be found at: http://www.kodakgallery.com/Slideshow.jsp?mode=fromshare&Uc=a1z30nd.59tjw7pt&Uy=-lmxtrq&Ux=0
This week, we have been hanging out, uploading all 200 pictures, and I've been working on websites. I am getting so excited for graduation and even more excited about my party. In 14 days I will graduate from high school and it is so hard to believe. These past 4 years have gone by so fast despite having had 5 surgeries and 6 hospital stays and having only attended less than 40 days of high school (I think I should get the award for least days attended, LOL). Time sure flies! Well, that is all for today. Saturday, we are going to CT to celebrate Ethan William, aka little chicken's birthday. Ethan will be one year old. Please visit Ethan to wish him a BIG HAPPY BIRTHDAY!!! (http://www.our-sma-angels.com/ethan ). Until next week, hope everyone is hanging in there!
Quote for the day:
A true friend is one who thinks you are a good egg even if you are half-cracked. ~Author Unknown
MJ
Friday, June 2, 2006 9:25 AM CDT
Hi everyone:
I have to share some pretty cool stuff that happened tonight. Tonight was Senior Awards Night at the high school. It is by invitation only as there are 215 students and only around 90 received an award tonight. It started at 7pm and we left the school at 10pm. It was a long, hot night, but oh, what a night!!! There were over 200 awards to be handed out and MJ received a few!
MJ received 5 local scholarships, totaling $3,000 which is helpful!! After all the scholarships were handed out several awards were given. MJ received the President's Award for Educational Excellence and is ranked number 6 and made the honor's list (top 10 f the class). Before these two awards was the coolest thing. They announced the winner of the Triple "C" Award sponsored by the State of New York Attorney General's Office (Eliot Spitzer) The Triple "C" Award was presented to MJ. The award reads "In recognition of your tremendous COMMITMENT to bettering yourself, your school, and your community; your strength of CHARACTER which has helped you to achieve your goals and will guide you in making the right decisions in the future; and your remarkable COURAGE which will aid you in meeting all the challenges ahead." The coolest thing was that you had to be nominated by someone from the school. MJ's guidance counselor wrote an amazing letter that was read in whole to everyone. I am going to get a copy of it to share with you. The representative from the Attorney General's office said that he had to read it because it was amazing. MJ was referred to as a quiet leader, one who most people do not know about. Most of the kids on the stage sort of had the dumbfounded look on their faces when the letter was being read. (Most kids came up to MJ before the ceremony started astounded that she is attending college and were pretty much shocked as many still think she is dying). After it was presented, MJ received a standing ovation (first one in many years) by all. There were many a "wet" eye as it was being read and even more during the ovation. We are all so very proud of MJ. I just had to share MJ's day, even though she didn't want to.
Brenda
Friday, June 2, 2006 0:33 AM CDT
Hi everyone:
I have to share some pretty cool stuff that happened tonight. Tonight was Senior Awards Night at the high school. It is by invitation only as there are 215 students and only around 90 received an award tonight. It started at 7pm and we left the school at 10pm. It was a long, hot night, but oh, what a night!!! There were over 200 awards to be handed out and MJ received a few!
MJ received 5 local scholarships, totaling $3,000 which is helpful!! After all the scholarships were handed out several awards were given. MJ received the President's Award for Educational Excellence and is ranked number 6 and made the honor's list (top 10
Monday, May 29, 2006 10:12 PM CDT
Hi Everyone:
For those of you who received my last update, you can skip the next 5 paragraphs. But reread my schedule because it has changed.
I've been doing pretty good. Got sick last weekend, but started on antibiotics and just finished it yesterday. I'm all healthy now.
Wednesday and Thursday, Brenda and I drove to Ohio. The trip was fairly uneventful, just full of rain. Friday morning, I had my math placement test (which took forever to schedule it and only 10 minutes to take it!). As I said, it only took 10 minutes and they only asked me algebra questions. I placed into precalculus, which is okay, but trig is next and I've already had a lot of trig and they never asked any other questions besides algebra (no trig or geometry...whatever)
My weekend here was good. I spent the whole weekend with my family. On Saturday, we went to the new Super WalMart ... guess what I bought...if you guessed the normal, fabric, you are right! After WalMart, my grandma, aunt Jill, and cousins Zach and Pete and Brenda and I went to lunch at Steak and Shake. I love their burgers and fries. Sunday, I got to sleep in, which I needed. YEAH!!! Jill, Zach, and Pete came up again and I got my haircut and tipped. We mostly just hung out and had a relaxing day.
Today, I had Freshman Orientation. I am officially a freshman in college (even though I'm still a senior in high school). LOL!!! It was an all day event, the morning mostly listening to stuff. After lunch, I got my college ID card and registered for classes. All honors freshman students are required to be in a learning community. A learning community is a group of 15 to 20 students who are placed together and take 3 classes the first quarter together and all 3 classes are inter-related. I was placed into the Service and Society Group (gee, do you think I will fit in a group that focuses on service projects???). Anyway, my schedule for September is as follows:
Monday:
Precalculus: 11:00am to 11:55am
Tuesday: (my busier day)
Social Life (Sociology): 8:30am to 10:10am
Precalculus: 11:20am to 12:05pm
Service and Society Seminar: 2:15pm to 3:55pm
The Science of Behavior (Psychology): 4:10pm to 5:50pm
Wednesday:
Precalculus: 11:00am to 11:55am
Thursday: (my busy day)
Social Life (Sociology): 8:30am to 10:10am
Precalculus: 11:20am to 12:05pm
The Science of Behavior (Psychology): 4:10pm to 5:50pm
Friday:
Precalculus: 11:00am to 11:55am
That is 15 credit hours. My fall quarter starts September 5th and is done November 17th.
Tomorrow I am meeting a friend for lunch and then with disability services. On Saturday, my cousins Aaron and Samantha are graduating and I am going.
On a sad note, I got HOMEWORK!!!!!! I have homework for college to do over the summer....that's just not right!! I have to read a book, "The Eagle's Shadow" by Mark Hertsgaard. Ok, I'm done complaining...it will be a good "sleeping pill" for those nights I can't sleep! LOL!!
Monday, Memorial Day, May 29, 2006
Well, we are finally home from Ohio. My week in Ohio was very busy but I had a good time. So, last Tuesday, I went back to campus and met Brittany C, who has SMA type 3, and talked about life on campus. It was great to see her again. She will be a senior next year. I also ran into a new friend, who I met the day before. He gave me tour of campus on Monday. I hope to keep in touch with both he and Brittany! I also had a meeting with Disability Services, that we did nothing. She asked me what we needed to discuss, but she was the one who wanted me to come. Oh well, it was an okay day. We stopped at Super WalMart on the way home to get dessert for Brenda's birthday (it was May 23rd)...she wanted Vanilla Blue Bunny Ice Cream. We also had homemade scalloped potatoes and ham, salad, ice cream and carribean truffle pie!! Lots of dessert!!! Wednesday, we took grandma to physical therapy and ran errands while she was working out. We sent out 2 new blankets and got groceries for grandma. After therapy, we went back to grandma's house and I had special visitors. Angela King and her husband, Dominick came by grandma's house!! Dominick hooked up a power tech unit that I am trying out for Pulmonetics. It is pretty cool and is working out great! I'll fill you in later about the specifics of the unit but let me tell you, it will change people's lives for the better. I was so excited to meet Angela finally. We talk online all the time and finally got to meet her in person. I'm glad I got to meet her and Dominick (Thanks for coming down!). Dominick also looked at my vent that quit working and it was a good thing that Millenium sent a new one, because the flow vent valve was blown. Thursday, we took grandma shopping for a new TV and for fabric for B4SMA (see, it is not a trip unless we buy fabric)! Friday was another busy day as grandma had therapy again, we sent out another blanket, and took grandma shopping for a TV Stand. We met Aunt Jill and the boys and shopped with them and went out for dinner. We had a great time. After we got back, Brenda and I went down the driveway to look at a tree that got blown down by a storm.
Saturday, was yet another busy day. We had to go down to Springfield again and return the TV Stand and find a smaller one. We also got more fabric for B4SMA! LOL!! Then we cooked dinner and went to the Urbana High School Graduation. My cousins Aaron and Samantha graduated so we took Grandma to the ceremony. It was two hours long. It made me more excited for mine to come!!
The weekend traveling went well. Just very hot weather. I hope it cools back down. This week coming up, is busy too! Tomorrow I have practice for the senior awards ceremony which is Thursday night. Friday through Sunday we are going to Family Camping at Camp Hemlocks with a bunch of SMA Families. I can't wait!! We always have a great time with lots of laughs!!! That's all for now.
Prayers going out to everyone who is under the weather at this time.
Quote for Today:
"I hope that my achievements in life shall be these - that I will have fought for what was right and fair, that I will have risked for that which mattered, and that I will have given help to those who were in need that I will have left the earth a better place for what I've done and who I've been." ~C. Hoppe
MJ
Tuesday, May 16, 2006 9:05 PM CDT
Quick addition to my journal. Tomorrow we head to Ohio! By the next time I post, I will be a true college freshman!! I am nervous but excited. I will post when I back, but until then everyone stay well!!
MJ
Hello Everyone:
We got home from Massachusetts around 5pm. We definitely were not ready to come home from the Reilly's home!! I loved their home, but more importantly I love their wonderful, wonderful family! Thank you, Reilly family for your hospitality.
We arrived in Massachusetts around 3:30pm on Friday. It was wonderful to see Owen, Connor's brother, come running out to greet us! The Reilly family invited us to stay at their home which is absolutely fabulous. I enjoyed running from room to room. Tim, Connor's brother, enjoyed looking at and playing with some of my equipment. The ramp that was built last weekend was wonderful and so helpful (thanks Jim, Mark and Bill for helping me and of course Connor). Brenda unloaded the van while I sat and talked with everyone. We ate a great dinner and just hung out and talked and talked. I laid down around 11pm and got to sleep about 12.
Saturday, I woke up at 9am. We hung out most of the day. Later in the afternoon we went over to the Johnson's house to get the grand tour. (They were featured in November on Extreme Makeover: Home Edition). What a beautiful and wonderful home. Wish we could have stayed forever talking to them. What a wonderful family. I'm glad we got the chance to meet in person. After the Johnson's house, we went back to the Reilly's and had dinner....I must say, that the ravioli's were the best! I have to get some!!! Karen, Bill, Brenda, and I stayed up until midnight talking about lots of stuff. It was great. We talked about a lot of different stuff and laughed a lot. (LOL, Karen!!) I fell asleep around 1am, not good considering we had to get up early Sunday for the walk.
Sunday morning, dawned bright and early with Karen throwing toys down the steps. I was up in my chair at 9:00am. We headed over to the walk around 10:30am after wrapping my hands to protect my blisters. I met a lot of Karen and Bill's friends, talked to a local doctor, Dr. Darrius, who was shocked that I can breathe, LOL!! I met Ayla Brown, American Idol finalist, who sang the Star Spangled Banner. I must confess, I didn't know who she was, as I don't watch the show, but what a wonderful voice she has. Bill talked first, then Ayla sang, and then I gave the opening blessing/speech/prayer. Here is what I said:
"Someone once said When the world says, "Give up,"
Hope whispers, "Try it one more time."
I think this quote embraces the philosophy of the Reilly family, actually every family who has or is currently dealing with SMA. By attending Connor's Fun Run, you are giving families hope! Hope that a cure can be found, hope that families can receive much needed medical equipment. The journey to a cure for SMA will not be a fast one, but with every step you take today you're bringing hope!
I would like to conclude with a bible verse from Ecclesiastes, 9:11, "I returned, and saw under the sun, that the race is not to the swift, nor the battle to the strong, neither yet bread to the wise, nor yet riches to men of understanding, nor yet favour to men of skill; but time and chance happeneth to them all."
I think my speech went okay. Then the walk started. While it was going on, I hung out with Peg for awhile and also the Potter family. Murphy is just to darn cute for words. There were a few families that came to the event. The Gaudreau Family was there (which is always wonderful to spend time with them. The Norton Family was there, whom I have never met before, so I gave Owen a blanket. Owen is quite cute and quite funny. The Johnson Family was also there this year. I'm so glad we got to meet again. I think that was all besides the Potter's, Reilly's and Peg. I'm sure there were "angel" families there that we didn't have a chance to meet, but what a great turnout there was.
After the walk, we went back to the Reilly house for pizza and money counting. The Potter Family, Peg, and Colleen (Karen's sister) came over. We had a great time and loved spending that extra time together. I laid down at 10pm and was asleep by 11:15 or so. Oh, by the way, the weather was wonderful. I didn't get any more sunburn ( I used SPF 50, so I was protected).
Monday, Brenda woke me at 10am so she could get stuff packed up. I hung out with Connor and Nurse Jennifer this morning while Brenda packed. I got to see Owen before I left and had fun hanging out with Owen and Bill too. We left the Reilly house around 1pm and stopped in Connecticut for lunch at Country Pride. We had a Breakfast Skillet that was totally delicious. We drove the rest of the way home. We didn't hit much traffic, so that made it a good ending!
All and all, I had a fabulous vacation weekend. I wish I could have spent more time with everyone and was so sad to leave. Here is the link to all the pictures we took, not a whole lot, because we just had fun hanging out. http://www.kodakgallery.com/Slideshow.jsp?mode=fromshare&Uc=a1z30nd.1jhso2yp&Uy=bs71x9&Ux=1
Hugs to all. Hope you all had a great weekend too!
Quote for Today:
To be nobody but yourself in a world which is doing its best, night and day, to make you everybody else means to fight the hardest battle which any human being can fight; and never stop fighting. ~e.e. cummings, 1955
MJ
Wednesday, May 3, 2006 9:03 PM CDT
Hi everyone:
Since last week, I've been taking it easy. On Sunday, I attended the 5th Annual SMArt Walk (Walk N Roll) event in Connecticut. There were 9 kids there that have SMA and many friends and families of other kids. My friend Lauren and her mom also came again, which was great. It was a beautiful day...almost too beautiful as I got sunburnt from my tray. The sun reflected off of my tray and I got 2nd degree burns on my hands. It wasn't hit by direct sunlight but reflective light. Since Monday morning, the size of my blister has grown from the size of an eraser to bigger than a quarter and about half an inch tall. It is starting to limit my movement since it pulling the skin really tight. (If anyone wants to see pictures of my blisters, gross I know, let me know) Anyway, here is the link to all the pictures from the walk.
http://www.kodakgallery.com/Slideshow.jsp?mode=fromshare&Uc=a1z30nd.4wqmyjux&Uy=c6o1lu&Ux=1
Monday I had my OT appointment to get my hand splints adjusted. Good thing my blisters were small at the beginning. Both are adjusted, but I can't wear them now cuz my blisters are so big. I also got a pinky splint for my right pinky. I somehow hurt my tendon on that finger, playing rugby!!! LOL!! Guess I played rugby in my sleep some night! Hopefully my finger doesn't get any tighter and will start to get better now.
This week, I have been working on my buddy, Joshua's website. I am almost caught up with all the pictures.
Friday, I am driving up to Massachusetts for Connor's Fun Run. I am the opening speaker again this year. I can't wait to see everyone again.
Next week, I have an appointment with Dr. Bethel. Brenda is going to change my tube in Dr. Bethel's office, so pray that it goes well. Hopefully, next week, we will go visit Ethan again (since I missed last Thursday). That is about all for now. I will update when I get back from Massachusetts. Hope everyone has a good rest of the week and a great weekend.
Prayers are going out to Leah M, Logan H, Aleena M, and of course anyone else who is sick.
Quote for today:
If you don't like something change it; if you can't change it, change the way you think about it. ~Mary Engelbreit
MJ
Tuesday, April 25, 2006 2:39 PM CDT
Hi everyone
Sorry that there hasn't been a new update. Been busy doing websites and homework. I have been updating my other websites too. Figured mine needed an overhall too. I can't believe that it is almost May! Where does the time go??? Since I last wrote, I have been laying low and working. Preparing myself for the next few weeks of being on the go.
Last week, Brenda and I went to visit a bunch of friends in Connecticut. We had a blast. It was a little SMA gathering. Our friends, Grace and Kelly from Texas were up in New York, so Aunt MeMe picked them up from the train station and we got together at Ethan, Jason, and Kelly's house. Billy and his mom Katy came too! We had a good time (although I felt old since Grace was the next oldest kid - at age 2). I love seeing my little buddies, so I had fun. We took lots of pictures, which can be seen here ( http://www.kodakgallery.com/Slideshow.jsp?mode=fromshare&Uc=a1z30nd.6sfataex&Uy=9xl38o&Ux=1 ).
On April 18th, my Aunt Vicki and Uncle John had their baby. Welcome to the world Henry McNamara! I can't wait to go see my new cousin.
Yesterday, I had an appointment at Blythedale to finally get my footsplints. It only took 8 weeks to get them even though they are off the shelf splints. Anyway, I got PRAFO's. (Pressure Relief Ankle Foot Orthotics) They are from www.prafo.com . They are so comfy to wear, although very warm and toasty. I mostly wear them in bed while I am on the computer to keep my ankles from pronating (rotating out). See attached for pictures. I also have an appointment with my OT, Julie, on May 1st. My pinky finger on my right hand has gotten really tight and sore. I have trouble getting it straight. I also am going to have my hand splints worked on.
So, the busy times begin here.
- Sunday is the 5th annual SMA Walk in Connecticut. Can't wait to see all my little buddies again.
- May 5th, I am off to Massachusetts to speak at Connor's Fun Run. I am very excited to see Connor and his family and all my other MA friends.
- May 10th is Dr. Bethel. Brenda is going to change my J tube while Dr. Bethel looks on. Crossing my fingers that it goes okay.
- May 16th I am heading to Ohio. I will be registering for classes and such at Wright State. I am going to stay a little longer to visit with grandma.
So, as you can see, I am going to be busy the next month.
Prayers are heading out to all my friends that are in the hospital and special prayers to the families whose children have passed away and joined the angels. Your children will never be forgotten.
Quote for Today:
If you want to make your dreams come true, the first thing you have to do is wake up. ~J.M. Power
MJ
Wednesday, April 12, 2006 8:22 PM CDT
Hi Everyone!
Today I FINALLY got to see the article from the local paper about me meeting Nita Lowey (my representative) in Washington DC. It doesn't mention SMA but it says my name and that I'm a leader. Anyway, check out the link to read the article.
Article
MJ
Friday, April 7, 2006 6:48 PM CDT
Hi everyone:
Sorry for the lack of updates. Not much has been happening since my return from Washington DC. I finally got over my pink eye and pneumonia. My lungs are back to being clear, thank goodness!!! My bloody noses have stopped which is also good!
On the college front, I have been busy filling out scholarship forms, that are all due on April 18th. Lots of essays and forms to fill out. Speaking of scholarships, in the past 2 weeks, I received 2 more scholarships.
First of all, THANK YOU SO VERY MUCH to PAYTON'S PALS PROJECT COLLEGE!!!! Because of Payton and all of Payton's Pals, I am getting a scholarship to Wright State University. Thank you so much everyone for making this possible. I'm unable to express the amount of gratitude I feel for everyone at Payton's Pals. Every day when I am in college I will remember Payton and all the wonderful people who support Payton's Pals. I will never be able to thank you all enough. Rob & Debbie: Thank you for generosity! Not only for the financial help with college but for always being the people to remind me why I continue to participate in the SMA community. You guys will ALWAYS be the best parents to the most perfect angel. I love you guys!
The second scholarship I received is that I have been named a WSU Honors Scholar. This is in addition to the previous scholarship I received naming me a Wright State Scholar. These two WSU Scholars add up to $5,000 a year. Because I am an honors student, I have been invited to attend the early registration for next year in May. So, on May 16th, we will be heading to Ohio, yet again, so I can do my math placement test and register for next semester, get my photo ID, and meet my advisors. So, on May 22nd, I will be a full fledged registered freshman!!
What else have I been up to in the past three weeks: HMMMM!! What else do I do but websites! I have really been enjoying working with Kim J and Laura at getting websites up and running. So many websites, so little time, but I am having a blast!
Wednesday, I did go to the mall and met grandmother. We met for lunch and then went shopping. Guess what I bought??? If you said fabric, you would be right!! What else do I buy!
Tomorrow we are going to the hotel to pick out food for my graduation party. Stay tuned for the online invitation that will be heading your way!
I will be busy the next several weeks.
April 19th: Appointment with VESID for college assistance
April 20th: Visit with the Coggins!!!
April 30th: CTFSMA SMArt Walk
May 7th: Connor's Fun Run
May 16th: Going to Ohio for SOAR
June 1st: Awards Ceremony at School
June 2nd: Family Camping at Camp Hemlocks
So, as you can see, I will be busy but will try to be better about updating my travels and adventures. Don't forget to check out the picture attached. Hope you all have a good weekend.
Quote for today:
God gave you a gift of 86,400 seconds today. Have you used one to say "thank you?" ~William A. Ward
MJ
Monday, March 20, 2006 9:08 PM CST
I finally got the pictures uploaded. Enjoy!
Pictures From Washington DC
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Hi Everyone,
I arrived home yesterday at 4pm. Here is the very long update. Pictures will come soon...
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Tuesday, March 14th
We arrived in DC safely for the National Young Leaders Conference around 2:00. I checked in upstairs and then Brenda moved my stuff into my room while I watched TV (what a life!). At 3pm, I went to finish checking in and met my youth leader, Tommy. He seemed very nice. I also met one of the kids in my group, Rohan. Tommy told Rohan and I that we were required to attend a meeting at 3:30, the Model Congress Briefing. It was an ok meeting, kind of boring, but oh well. After the meeting, we went to dinner. Dinner was not very good. It was supposed to be chicken strips, but it was more like chicken crunch...it was actually fried breading with a little bit of chicken in the middle and french fries. I am so glad we brought food from home, as Brenda and I were hungry! At dinner, I heard a younger kid (from the Junior NYLC) say to another kid, "Is that the nurse?" referring to Brenda when another kid replied, "Obviously!" Brenda wore scrubs the whole week, so she looked like a nurse. That made us laugh and laugh. I told my friend Kim S. that I wish I was a 6th Grader because they're all nice and they all smiled at me when I smiled at them. Most of the high schoolers stared at me or ignored me. After dinner, at 7pm, we were welcomed to the conference. At 7:30, Neil Willenson spoke as the keynote speaker. He is the founder and CEO of Camp Heartland, a camp for kids/families with HIV/AIDS. He was a very good speaker. He motivated everyone with his engaging personality. At 8:45, we broke up into our small groups (LMG's). I was assigned to be in the Sequoyah group. We met in Kentucky Room B all week long. We introduced ourselves, did an activity with a partner, talked about goals and expectations, got homework (yes, you read that right, WE HAD HOMEWORK). We had to read about the crisis in Sudan for our "If I were President: Crisis in Sudan simulation". We stayed in the room until 10:45. I was exhausted as I had been up in my chair since 7am. I skipped the Meet and Mingle Social. I think I finally got to bed/sleep around 1am, after my breathing treatments and homework. Tomorrow will come way to early, it starts at 7 a.m.!
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Wednesday, March 15th
I forgot to add, the kids in last night's small group were nice. Today, I was chosen to be the senate majority leader in the "If I were President" simulation. It was the crisis in Sudan. I met a few nice girls named Alisha and Laura. This morning, our first meeting was at 8am. (I was awake at 6:30 and up in my chair at 7am) We did the If I were President: Executive Simulation. It was quite interesting. We broke up into small groups and discussed whether or not we should go to war, send troops, send federal aid or what. During our small discussions, people came in with news flashes, with new situations that dealt with that affected our decisions. They got tired of coming in, so they would crumble up the paper and throw it in at the person. After small groups, we all discussed our goals with the president, Chris, who then had to hold a "press conference" where we then played the press. It was an okay activity...not really my kind of thing, but it was okay. After we discussed it, we had another keynote speaker, some guy from the Dept. of the Interior. He substituted for Lynn Scarlett. He wasn't that good. Everyone later said he was very boring. When kids asked questions, by the time he ended, you forgot what the question was. LOL. After he was done, we were debriefed about his speech before boarding the buses for DuPont Circle. I had my own bus/van. My driver was Raymond, who was very nice. He took me where I wanted to go and picked me up close to where we were!
For lunch, we went to a nice place in DuPont Circle. We shared a Turkey Sandwich, which was good, but expensive -- $13.00!! ( and it only had four slices of turkey on it ). We stopped by CVS on the way back to the bus and there were about 300 of the 400 kids from the conference there too! They were all buying chips and junk food for lunch LOL. Not a very practical place for students to eat on a $7 to $10 budget.
We then boarded the buses and went to see the Lincoln, Korean War and Vietnam memorials. I loved the Korean War Memorial. The wall was simple from far away, it looked like a mirror, but as you got closer, you could start to see faces on it. The Vietnam Wall was cool too, but the path was extremely bumpy and hard to drive on. I didn't walk the whole wall as my hand kept falling off the joystick. I was able to go up into the Lincoln Memorial. It was cool to be way up top and looking out at Washington Memorial. The statue of Lincoln was huge. It was so cold and windy, that we left a little early. When we got back to the 4-H Center, we took a two hour nap. You know I was tired, because I slept in my chair!! We woke up in time to attend my LGM meeting about preparing for Model Congress. My group played a game called Agree, Disagree or in the Middle. Some of the questions asked were 1. Should there be a national Database for sex offenders and 2. Should Sudafed products be handled only by a pharmacist and locked behind a counter? There were 10 total, which would be used later for Model Congress.
After that was dinner. I was excited because they said it was stuffed shells, spaghetti and pizza. The pizza was gross looking so I went out to the pasta bar, where there was no stuffed shells, no spaghetti left and beef-a-roni that looked totally nasty! So Brenda and I had a salad and Grape Slimeys, (like a slush). After dinner, I was so tired, that Brenda signed a waiver and signed me out. I called everyone and went to bed! The meetings didn't end until 10, but then there was a social until 11pm. I was asleep by 9:30!
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Thursday, March 16th
Today was pretty fun. This morning we had to be on the bus at 7am! Our first stop was Congress, where got to go to the floor of the House where the State of the Union Addresses are held. Mark Foley, a Rep from Florida, spoke to the group. While they were in there, Brenda sat next to a dad whose son was also in a wheel chair. They were talking and come to find out that Chris has SMA as well. He is 17 and from Texas.
While we were waiting for Mark Foley to talk, we met the actor who plays Monk on TV (don't remember his name).
After the speech, which was very good and funny, we all left and split up to go to individual meetings. Each student was to meet their state senators and representative. I went to the Rayburn building where I met Nita Lowey the NY State Representative. I gave her a Faces of SMA CD. The aide took photos of me and the Nita Lowey as well as another local girl. The aide told me that they would be sent to the local paper so I may have press coverage when I get home.
Next they went to the other side of the Capitol to the Russell Building. I was to meet up with some people from Hillary Clinton's staff, but no one showed up. When I found Clinton's office, the staff in her office told me that they had no "idea what happened and that "it wasn't their problem". They also weren't very helpful in opening the door so I could get into the office. Needless to say, I was less than impressed by Senator Clinton's staff. I did see other kids from NY who met another Clinton staff member in the stairwell (their assigned meeting place). The guys asked if there were any questions and when there weren't any, he walked away, turned around and said "or by the way, I'm supposed to say - Go to College".
After that it was off to the Supreme Court for lunch. I was given "1000 bonus" points (a joke inside her group) for making it up the ramp into the Supreme Court. They were giving the Supreme Court a "face lift" and the ramp into the building was a nightmare!! The ramp was part wooden, part cobble stone, part marble and then more wooden. Quite an adventure! For lunch, I had french fries and Brenda had a bacon cheeseburger.
After lunch, they went to the Hart building to meet with Senator Charles Schumer, but his office was under construction, so I had to go back to the Russell building. Each time you entered a building, you had to go through security!! What a pain that was! We asked where Schumer's office was, and made it their early and found out that he was on the floor voting. His staff were VERY nice though. I gave the aide a Faces of SMA CD and was promised it would be given to the senator. After that meeting, it was off to see the W.W.II memorial which was "very cool". I loved the design and set up. It was very beautiful and a wonderful tribute! Brenda and I left early to go rest before dinner. For dinner, we had grilled cheese sandwiches, salad, and grape slimeys.
After dinner, we had the Judicial Simulation. We did a Mock Supreme Court Case where I was one of the Supreme Court Judges (I was Judge Breyer). The results of our case were skewed because most of the judges based their decision on friendship, not on the case itself (teenagers, ugh!). By 8pm, I was physically exhausted and feeling pretty gross. I was getting very congested and needed to go lay down. I left the meetings at 8pm and skipped the Variety Show that lasted until 11pm. I forgot to say, Brenda and I were in bed asleep by 10pm at the latest and every night at 11pm, the staff would come at 11 to do "room check" and wake Brenda up to make sure I was in my room!! DUH!!
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Friday, March 17th
Today we started off the morning having breakfast at the Press Club (after boarding the bus at 7am again). The breakfast was pretty skimpy. It was one scrambled egg, 2 slices of Canadian bacon and about a fourth of a waffle with berries on it. It was pretty boring as all the reporters dodged their questions. It was a bunch of "key" reporters that I really never heard of before. There were supposed to be 4 reporters but one never showed. Matt Bai, from the NY Times Magazine was there, along with Jamie Coomarasamy from the BBC, and Simon Marks from Fox News and Jim Lehrer show on PBS were the three speakers. Half of the kids fell asleep during the discussions.
Then it was off to the FDR Memorial - it was really cool. It is all outside, divided up into four rooms, each room representing one of FDR's terms of office. It was made totally out of stone. Each room had cool quotes engraved into the walls. Next was the Thomas Jefferson Memorial, I didn't go inside because they I was running late and getting cold and tired. I did have Brenda take my picture in front of it. I have a pretty funny picture from it that I decided should be called, "Life is a One Way Street and I chose to go the Wrong way!"
They we went to Georgetown for lunch, it took a long time to find a restaurant that was accessible. I was very disappointed at how inaccessible Georgetown was. Lots of the restaurants had ramps up to the front door but then had steps inside the door. How strange is that. We ended up eating at Johnny Rockets.
After lunch, they went back to the room, where I crashed. I fell asleep for about a half an hour and woke up and decided that I was done for the day. I actually got out of my chair and took a 2 hour nap. Although I was much better tonight by dinner time I had a fever so I stayed in bed and missed all of tonight's meetings. The Director told me to STAY in my room because my health was more important, and then she even joked that she wished she would have taken a nap too. I was asleep by 9:30pm.
Tomorrow is the last full day with a Model Congress, a trip to the Smithsonian and then a Dance. The Director told me to make sure I came to the dance for the fun.
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Saturday, March 18th
This morning I got to sleep in until 7am. We boarded the buses at 8:30 for a "White House Photo Opportunity". All that it meant was we drove to the White House, got off the bus, walked to the center of the parking lot, took pictures through the fence and walked back to the bus! LOL! Exciting!!
After that we went to the Department of the Interior where we held our Model Congress. I had missed all the meetings about the amendments we were trying to pass in our bill, but were the ones from the game we played on Wednesday. We went through each amendment and voted pass or fail. 9 out of our 10 amendments passed but when it came time to pass the Bill, it failed. That was it, it was over. After that we went to the Smithsonian Museum. Brenda and I went to the Air and Space Museum and took pictures for Casey! We ate lunch at McDonald's there. It was pretty cool. We stayed until 3pm and headed back to relax before the dance.
Everyone boarded the buses again at 6pm and went to the Marriot Metro Center Hotel for the dance and dinner. Dinner was quite skimpy! A small piece of chicken, small amount of rice, 3 green beans, one carrot, a few pieces of squash and a piece of carrot cake. I at part of the cake. We even had the color guard for the start of the dance while a small group of kids sang the Star Spangled Banner. It was cool! I, at first, felt really upset. There were NO KIDS sitting at the table with me. Amanda and Lee, the directors came over and joined Brenda and I. I had a lot of fun with them. Amanda and Lee had me help them do their dance. I was giving them dance lessons, which made the other leaders upset since I didn't give them lessons!! LOL! Each two leaders had to do a "little dance" when they were introduced, something to make everyone laugh!!! They succeeded in making everyone laugh!! After that, we had group pictures. I was in the room while kids were dancing and I was shaking my head at "formal dress" when I was kicked by some girl in high heels in my shin! I quickly left the room and refused to go back in. I hung out and talked to Tommy and Amanda before leaving at 9pm. The dance lasted until 11pm and bed check wasn't until midnight....which they woke up Brenda once again!! LOL!
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Sunday, March 19th
This morning was another early morning. Our meetings started at 7:30am. We did a wrap up and got our certificates and T-shirts. Brenda got to pack the van while we did the meeting. We did group pictures again (all in casual clothes this time) and said good-bye. At 9:15, we had our commencement. Four of the kids spoke and said good-byes and then we were done. We went to the van and got in and left at 10:30 am. It was a long trip back....I was tired and feeling crappy. I have lots of junk in my lungs and pink eye and Brenda was tired too so we stopped twice. We stopped at a rest stop for lunch (Burger King) but neither of us ate, since our french fries tasted like chicken?? GROSS! We got home at 4 and I laid down right away.
I had a great time and was glad I went. I wished that the meeting focused more on leadership than on political leadership, but I am so glad that I was able to attend. Thanks Kathy and Kim S for helping me attend!
Quote for the week:
The purpose of life is to live it, to taste experience to the utmost, to reach out eagerly and without fear for newer and richer experience.
~Eleanor Roosevelt
MJ
Sunday, March 19, 2006 6:17 PM CST
Just wanted to let you all know we're home...We're going through e-mails so I will *try* to respond to those of you who wrote to me off chat soon. Thanks Kim S, Kim J, and Sue O for your support while I was away! I love you guys to bits!
MJ
Friday, March 17, 2006 11:52 PM CST
Today they started off the morning having breakfast at the Press Club. MJ said it was pretty boring as all the reporters dodge all their questions. It was a bunch of "key" reporters that MJ didn't know.
Then it was off to the FDR Memorial - MJ said it was really cool. Next was the Thomas Jefferson Memorial, but they didn't go inside because they were running late.
They went to Georgetown for lunch, but it took a long time to find a restaurant that was accessible. They ended up in Johnny Rockets.
After lunch, they went back to the room, where MJ crashed. She took a 2 hour nap out of her chair. Although she is "much better tonight”, she had a fever so they stayed home and missed all of tonight's meetings. The Director told them to STAY home because her health was more important, and then she even joked that she wished she would have taken a nap too.
Tomorrow is the last full day with a model congress, a trip to the Smithsonian and then a Dance. The Director told MJ to make sure she came to the dance.
(Relayed by Kim S, posted by Kim J )
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March 16th
MJ said today was pretty fun. This morning they had to be on the bus at 7 a.m.! Their first stop was Congress, where got to go to the floor of the House where the State of the Union Addresses are held. Mark Foley, a Rep from Florida, spoke to the group. While they were in there, Brenda sat behind a boy who was also in a wheel chair. They were talking and come to find out that Nick has SMA as well. He is 17 and from Texas.
Oh -- before they went into the floor -- they met the actor who plays Monk on TV (we don't remember his name).
They left and went to another building where they met Nita Lowey the NY State Rep. MJ gave her a faces of SMA CD. The aide took photos of MJ and the rep as well as another local girl and the rep. The aide told MJ that they would be sent to the local paper (in MJ’s hometown) so MJ may have press when she gets home.
Next they went to the other side of the capital to another building. They were to meet up with some people from Hillary Clinton's staff, but no one showed up. When the group went to find them, the staff in her office told them that they had no "idea what happened and that "it wasn't their problem" Needless to say they were less than impressed by Hillary Clinton's staff. They talked to another group who met another Clinton staff member in the stairwell (their assigned meeting place). The guys asked if there were any questions and when there weren't any, he walked away, turned around and said "or by the way, I'm suppose to say - Go to College".
After that it was off to the Supreme Court for lunch. MJ was given "1000 bonus" points (a joke inside her group) for making it up the ramp into the Supreme Court. Apparently there was some clean up going on and the ramp was part wooden, part cobble stone, party marble and then more wooden. Quite an adventure I guess.
After lunch, they went to another building to meet with Senator Charles Schumer - but he was on the floor voting. His staff were VERY nice though. MJ gave the aide a Faces of SMA CD and was promise it would be given to the senator. Then off to see the WWII memorial which was "very cool". And back to the hotel to rest before dinner. Whew! I'm exhausted just typing their day...
Later tonight, MJ participates in a Mock Supreme Court Case where she is the judge!
(Relayed by Kim S, posted by Kim J )
Wednesday, March 15, 2006 11:00 PM CST
MJ says the kids in last night's small group were nice. Today, she's had fun and was chosen to be the senate majority leader in the "if I were President" simulations. It was the crisis in Sudan. So this was a big honor ! She's met a few nice girls named Alisha and Laura.
For lunch, she and Brenda went to a nice place, Dupont Circle. They shared a Turkey Sandwich, which was very good, but expensive -- $13.00 !! ( and it only had four slices of turkey on it ). They stopped by CVS on the way home and said that about 300 of the 400 kids from the conference were there! They were all buying chips and junk food for lunch LOL.
They went to see the Lincoln, Korean War and Vietnam memorials. Then it was so cold and windy, that they told their Adviser that they needed to come home -- so they took a two hour nap. Then the group played a game called Agree, Disagree or in the Middle. The two questions were 1. Should there be a national Database for sex offenders and 2. Should Sudafed products be handled only by a pharmacist and locked behind a counter?
After that was dinner, which she said most of it was disgusting, but they both had good salads and Grape Slimys (slurpies probably to you and me).
----------------------------------------------------------
March 14th
MJ and Brenda arrived in DC safely for the National Youth Leadership Conference. She said that she wishes she was a 6th Grader because they're all nice and they all smile at her when she smiles at them.
They Checked in, got settled, and had dinner. There is a guest speaker at 7pm and then a small group meeting at 9 (22 kids in each small group). Then there is a game from 10-11, but she's skipping that and going to bed. Tomorrow starts at 7 a.m. !!!
(posted by Kim J )
Saturday, March 11, 2006 9:54 PM CST
While I'm away, my friends Kim S & Kim J, will be adding updates for me. Kim S will be writing the updates and they will be posted here by Kim J. Thanks girls! Love ya!
**************~**************~**************~**************
Friday, March 10, 2006 7:36 PM CST
Hi everyone:
Sorry for the long time between updates. I've been busy doing websites, homework and being sick. I got sick while in Ohio and came home with a lot of extra stuff in my lungs. YUCK! Tomorrow I finish my second round of antibiotics.
So, this past week, besides keeping busy, I had an appointment Wednesday at BCH to get new footplates. I also got my tray back after having it cut down. The only problem now, is my footplates are very loud and annoying. I hope they work out their squeaks and groans by next week. Today, I saw Dr. Proskin for a follow-up. I still have a few rattles on my left side, but nothing like last week. We played around with my meds this week, so I had to get new prescriptions written.
Tomorrow, I am going to go apply to get a passport. I need a photo ID but I can't get a driver's license, so passport it is! This weekend I am packing! Do you remember where I am going or what I am doing?
Yes, on Tuesday, I will be going to the National Youth Leadership Conference in Washington DC. I will be gone from Tuesday until Sunday. I am very excited but I know I will be very tired when I get home. The days start at 7am and go until at least 10 to 11 pm every day! Can you say, "TOOTHPICKS IN THE EYES!!!" We are staying at the National 4-H Center (http://www.4hcenter.org/index.html). Looks pretty cool, huh?
So that is my update for today. I probably won't have time to do updates until I get back from DC. Kim Sykora will be posting updates on chat and on the SMA Support Guestbook (http://www.smasupport.com/guestbook/) after I call (when I have a free moment). Hope everyone has a nice weekend!
Quote:
All my life I had been looking for something, and everywhere I turned someone tried to tell me what it was. I accepted their answers too, though they were often in contradiction and even self-contradictory. I was naïve. I was looking for myself and asking everyone except myself questions which I, and only I, could answer. It took me a long time and much painful boomeranging of my expectations to achieve a realization everyone else appears to have been born with: that I am nobody but myself. ~Ralph Ellison, "Battle Royal"
MJ
Friday, March 10, 2006 7:36 PM CST
Hi everyone:
Sorry for the long time between updates. I've been busy doing websites, homework and being sick. I got sick while in Ohio and came home with a lot of extra stuff in my lungs. YUCK! Tomorrow I finish my second round of antibiotics.
So, this past week, besides keeping busy, I had an appointment Wednesday at BCH to get new footplates. I also got my tray back after having it cut down. The only problem now, is my footplates are very loud and annoying. I hope they work out their squeaks and groans by next week. Today, I saw Dr. Proskin for a follow-up. I still have a few rattles on my left side, but nothing like last week. We played around with my meds this week, so I had to get new prescriptions written.
Tomorrow, I am going to go apply to get a passport. I need a photo ID but I can't get a driver's license, so passport it is! This weekend I am packing! Do you remember where I am going or what I am doing?
Yes, on Tuesday, I will be going to the National Youth Leadership Conference in Washington DC. I will be gone from Tuesday until Sunday. I am very excited but I know I will be very tired when I get home. The days start at 7am and go until at least 10 to 11 pm every day! Can you say, "TOOTHPICKS IN THE EYES!!!" We are staying at the National 4-H Center (http://www.4hcenter.org/index.html). Looks pretty cool, huh?
So that is my update for today. I probably won't have time to do updates until I get back from DC. Kim Sykora will be posting updates on chat and on the SMA Support Guestbook (http://www.smasupport.com/guestbook/) after I call (when I have a free moment). Hope everyone has a nice weekend!
Quote:
All my life I had been looking for something, and everywhere I turned someone tried to tell me what it was. I accepted their answers too, though they were often in contradiction and even self-contradictory. I was naïve. I was looking for myself and asking everyone except myself questions which I, and only I, could answer. It took me a long time and much painful boomeranging of my expectations to achieve a realization everyone else appears to have been born with: that I am nobody but myself. ~Ralph Ellison, "Battle Royal"
MJ
Tuesday, February 28, 2006 9:20 PM CST
We're home from Ohio! I will update further tomorrow, but wanted to let everyone know we are home safely. If you don't receive my updates via e-mail, scroll down to read about my adventures in Ohio!
2/21/2006 10:24:09 PM Eastern Standard Time:
Hi everyone:
We arrived Sunday after our 2 day trip. It snowed most of the way on Saturday and was soooo sooo cold in Pennsylvania. GJ arrived home from Florida after we invaded her house. My Aunt Jill and cousins were here and the boys helped Brenda unload.
Monday morning I got up early so Aunt Jill could cut my hair. After a quick visit with everyone, Brenda and I headed to Wright State for my disability screening appointment. It went extremely well. There was no talk of me taking classes to "learn how to walk and roll over" like last time. I did find out that I get an apartment next year (after trying for a week to get ahold of housing). All of my books will be on CD and I was approved for extended time for tests. I was done in 40 minutes, so Brenda drove past the apartment building where we will be living next year, very nice (see picture of outside). We then went to the campus pharmacy, who quickly told us that there was no way they could do my prescriptions next year. GRRRR!!! They gave us a place that would, that was 20 min away. We are going to look into that issue. I then called dad and asked if we could stay a day longer since my cousins are getting confirmed on Sunday! YEAH!!! I am staying until Monday. After we got back to Grandma's, a girl from WSU called and offered to let me come visit her apartment so I can see what they look like. That was scheduled for Wednesday. I did tip my hair blonde (see picture) so I am all ready to look great for my trip to Washington DC next month!
This morning I got up and got a phone call from the WSU student. She asked if I could come visit today, so Brenda and I headed back to Dayton. The apartment building is very nice and quiet. The apartment was too small for me, but it was a one bedroom. We went and got groceries after that and came back and cooked grandma dinner ... baked potato soup, my favorite!!!
Tomorrow, we are off to visit a local pharmacy and my great aunt is coming for a visit. Thursday is a visit to Children's in Dayton to visit the pulmonologist. I will try to update Friday or Saturday. I won't be back in NY until Tuesday evening, but will try to check email daily. Hugs to all.
MJ
2/23/2006 10:15:19 PM Eastern Standard Time:
Hi everyone:
Today was my appointment with Dr. Mueller from Children's in Dayton. We went with the expectation of having to fight to get what we need and were shocked! Dr. Mueller was so "in tune" with us that he asked us what we believed in and asked the appropriate questions. He said if I get sick, his first defense would be to ask Brenda and second defense would be Dr. Bach. He admitted that he wasn't perfect and wasn't afraid to ask questions.
Dr. Mueller will be my primary care doctor and laughed when I told him that I am an anomoly. I told him that I was the "yeast queen" which he quickly agreed when he discovered I had yeast growing in my left ear. EWWWW!!! I am doing eardrops to get rid of wax in hopes that it clears up by process of elimination!
All in all it was a good day today! Dr. Mueller will follow me every 6 months while I am in college. One more thing crossed off my list. Oh, the pharmacy situation is all worked out too!
MJ
Sat Feb 25 23:40:24 EST 2006:
Hey all:
MJ is confusing us here, once again. Wednesday night, MJ started with the
lower sats at night (a sign something is brewing). Thursday we saw Dr.
Mueller who was impressed with how clear her lungs were....Thursday night, her sats
never went above 96 and woke up Friday morning with a wheeze and sats at 94.
It took 2 to 3 hrs to get her sats to 95. Started her on antibiotics as
the wheeze was already in her chest. She got up in her chair Friday and did
great, no desats and only a couple coughs. Friday night went to sleep and her
sats were 84 to 94 all night, no matter what I did. This morning it was the
same, wheezing and chuncky sounding coughs and 2 to 3 hrs to get her up and
stable. She was up in her chair this afternoon doing fine with no problems.
Tonight it is the same thing. She starts at 96 and has slowly gone down. We
did liquid albuterol at 9:40pm and albuterol/pulmozyme/pulmicort nebs at
10pm and she is anywhere between 94 and 82. Even did percussion while sleeping.
There is no leak in her mask and has a good seal. Just totally odd!
Brenda
caregiver to MJ
Mon Feb 27 00:22:57 EST 2006:
Last night was pretty rough...for quite awhile, MJ's oxygen sats would drop
and sit at 78. Woke up and coughed her, came up to 96 and then she fell
asleep and they would drop again. Sat and played with her vent until 2am (not a
good idea when you have to get up at 7am to go to church) and got her sats to
stay above 84. Nothing else would work. I did extra breathing treatments
at night which helped but her stayed primarily between 85 and 96, so abnormal
for MJ. Today she was good. There were a couple times of noticable
wheezing/secretions, but she did good. Tonite, she started off good, fell asleep
while doing her breathing treatment and her sats were 97 to 98. As soon as the
neb was done, her heart rate went up and her sats went down....not below 83,
so I am not sure what the heck is going on here. We are supposed to be
driving home tomorrow ( will stay in Somerset, PA tomorrow). That is all for now.
No updates until Tuesday night. Hugs to all the other sick kids!
Brenda
caregiver to MJ
Wednesday, February 15, 2006 10:03 PM CST
Hi Everyone
OK, so I was hoping for a nice, quiet, peaceful week, with only one appointment, right???? WRONG!!! This morning I woke up and told Brenda that it hurt if I touched my wrist (I know, I know, don't touch, right???) Brenda looked and my arm (right above the wrist) was swollen and slightly bruised. Go figure! As the morning progressed, the swelling increased as did the pain. Heaven only knows what I did...guess I was dreaming something fierce last night, huh? We went to the doc and try explaining that to the doctor...."I think I broke my arm but I don't use them and I didn't do much yesterday...except for a shower" The Xray didn't show much other than very weak bones. Brenda said it presents like a stress fracture, which many times won't show on an Xray....so who knows. All I know is that it hurts. Everyone else was just trying to figure out what the heck I did! Leave it to me!!!
I did go to wheelchair clinic after the doctor. Using aquaplast (in a matching blue color, see picture) Barbara made me a switch holder. Quite styling!!
Also if you look at the attached picture, you will see me modeling my WSU sweatshirt! I must confess, it is the first time in many years I have been able to wear a sweatshirt (without it cut up the back) and be able to drive. Hooray for me! Thanks Kelly, Jason, and my buddy Ethan for my wonderful WSU sweatshirt!! I am ready for college now!
Quote for Today:
Patience and perseverance have a magical effect before which difficulties disappear and obstacles vanish. ~John Quincy Adams
MJ
Saturday, February 11, 2006 8:19 PM CST
Hi all:
I have had a better week but very busy!! Monday I had to go get measured for foot splints. Brenda refused to drive down to the Bronx (no parking available) and so we went to BCH. What a wasted trip. The guy took off my shoe, measured my foot, width of my calf and shin and said good-bye! Good thing we only drove to BCH (only 8 miles) and not to the Bronx.
Tuesday was a busy day but we didn't go anywhere. I started two new fundraisers for SMA Support. My calendar fund raiser is amazing. In less than a week, over 30 people have signed up, just think of looking at all those cute kids every month of the year!!! I also have been learning how to do front page and have been working on websites (THANKS KIM J, you are the bestest!!!) I have been having fun!
Wednesday, was another trip to BCH....this time for my wheelchair, yet again! The Invacare rep was there and declared that my footrests were broken, duh! But, we did get a few things figured out. The box on the back of my chair that kept falling off, is now secured to my chair and Brenda got an attendant control for my seat functions (attached to the back of the chair). I tried out a bunch of switches, since my microlight was severed. I couldn't activate the membrane switch or the jellybean switch (unless I breathed deep to push my hand out). We did go with the the jellybean switch that looked like a giant M&M. My new footplates are on order and they ordered a trial of a $500 switch. On the way home, Brenda came up with a solution (thanks Casey O, you saved us $500 and we love you!!!) It was a good thing because when we got home, my green M&M died!!! Brenda talked to my dad and he gave me the base of a doll stand and we hot glued my computer switch to it and velcroed it to my chair. Tahdah!!! A functional switch!!
Thursday was an average day. Did a little homework (I only have two classes this semester!). Worked on websites and my fundraisers and just rested.
Friday was yet another trip...but a special trip. I went to school (no school for the kids) and surprised my guidance counselor and the school nurse!! Over the summer, I was looking for the perfect thank you gift for the two of them, to thank them for all their help over my high school years and Janis said, "Make them a blanket!" So yesterday, I delivered the blankets to them. (I think they were surprised and I think they liked them!) See picture!
Today Brenda is trying to make blankets (she's not getting very far) and I have been hanging out and veggin'. We are in a blizzard warning for tonight and tomorrow
morning.
Next week looks less stressful but still busy. I have yet another appointment at BCH for my chair and next Saturday we are off to OHIO!!! I am so excited...I can't wait to see Grandma June and WWAJ and the boys. I have an appt with disability services at Wright State and then an appt at Children's Hospital in Dayton to re-introduce the NIV protocol to the pulmo dept since they all have seemed to develop amnesia about it. Should be fun and wish us luck. I will try to update again before we leave. Hope everyone has a great Valentine's day this year!
Love all, trust a few, do wrong to none. ~William Shakespeare
MJ
Tuesday, January 31, 2006 6:57 PM CST
Hello:
Well, it was an interesting day. I was preparing myself for the worst today, needing to have it changed in IR (interventional radiology) or even surgery, but I feel let down.
We went in and Emily tried to remove my old tube. She couldn't get it so she went and got Dr. B (Bhattacharyyia or something close to that). Dr. B said you have to push it in and out and sooner or later it comes out....so from the middle of the room, Dr. B had the tube and he pulled one way and I backed up my chair and guess what, it came out! Just kidding!! He pushed my tube in further and yanked and it was out. Good grief...didn't really even hurt, it was out before I could say Ouch! The balloon, when it burst froze into a strange position and was as hard as a rock. It turned into cement or something. And to make matters even better, the new Foley just slid right in! No problems. I feel let down. I was so prepared and ready for the worst news and we were done in 10 minutes. So my new tubie is in and it went well.
My new switch for my chair is being ordered soon, they are researching options as to what would work better than the microlight that won't reset my chair on every bump....thank goodness Brenda rigged up my old switch so I can drive around.
That is all the news that is fit to print! I am hoping for a nice peaceful week with no surprises! I am ready to go back to the humdrum of homework! LOL!
Today's Quote
Success consists of getting up just one more time than you fall.
-Oliver Goldsmith
MJ
Sunday, January 29, 2006 1:45 PM CST
Well, to start off, I will summarize my week in a phrase, "It is never a dull moment!"
Yes, I have had an adventerous week! Some good, some bad, some exciting, and some downright dreadful! To sum it up, an adventure!
I got over my cold that I had all last week. Did have some land in my lungs but managed to avoid the big "P" again! Started off the week by trying to get in contact with VESID (like vocational rehab). Talked to one guy who gave me information but I needed to contact another person after filling out paperwork (which he didn't have). I tried my new Phantom mask for sleeping but Brenda said, my body didn't like it.
Tuesday, I called the other person at VESID, who of course wasn't there, so I left a message. I also had a visit from the RT at Millenium. What a big confusing day. They brought over another vent to switch out, but it was the wrong one and my 2nd vent had a sticker that said it needed to be switched out, but really it didn't need to be switched out at al!. (Are you confused yet?) We did talk about college plans and what I need to make college easier. I will stay with Millenium, even though I am moving over 600 miles away. I gave them information about a new nebulizer I want to try (I am killing my neb machine every 3 to 4 months) and a new suction unit that is half the size of my current one. I also want backups to have on hand in case something happens to my equipment (oximeter, feeding pump, and Cough Assist) while at college. I can't go without it, so getting a replacement ASAP is not practica! I used the Phantom mask again and thought I slept good but Brenda says NOT! My heart rate was 20 to 30 points higher and my oxygen level was 3 to 5 points lower while using it. Plus, it is giving my nose a sore on a different spot.
Wednesday I had to get up early to go to the doctor. I had a follow up appt with the physiatrist at 2pm. We got there early so we could stop by the equipment clinic to see if they could fix my footplate and switch. At the doctor last week, my footplate kept falling off (not good) and while driving, when I went over a crack in the sidewalk, my chair would reset itself and I would have to wait before continuing to drive (big problem while trying to cross the parking lot!!!). When we got to clinic we found out about having an appointment at 4pm...no one told us. LOL! So, I saw Dr. Borkow first. I told him I wanted AFO night spints since my ankles are getting tight and sore. Brenda brought a picture of what we want so he knew what we were talking about. He checked my contractures. The good news is that my ankels still go to neutral despite not having AFO's for over 5 years. My knees have gotten better. My right is down to 20 and my left is down to 30. My left side is tighter than the right. My wrists are pretty good and only have slight contractures in both pinky fingers. At 4pm, after waiting for what seemed like hours and hours and getting sucked into Nick Jr. on the television, I went back for my equipment clinic appt. They are not sure what is wrong with my footplate. It is back on but it sits funny so my leg doesn't sit right so my ankle hurts. They are going to schedule an appointment with someone from Invacare to come and see what is wrong. My switch is too sensitive so every bump I hit activates the switch. We are researching options to figure out what else might work.
Thursday was an adventure in itself. I am still playing phone tag with VESID. The second person I called returned my call yesterday afternoon while I was at clinic but there is no cell phone service. That lady told me to call another guy so I did, but of course, no one was there. I have been working hard on homework and can officially say I am done with economics and shakespeare classes!!! Just have a paper left with my NonCreative Writing Class and then my first sememster classes are done!!! HOORAY!! I was very disappointed in my Creative Writing Class - it just wasn't much "creative" about it. We wrote a lot, but most was "writing for college". Thursday night, while watching TV, I suddenly screamed out and Brenda thought I didn't like what was on TV...but that would be too easy. My balloon for my Jtube/Foley burst. I could feel it and it really, really hurt. I freaked out but we decided that since it wasn't leaking, we would change it Friday night.
Friday was another adventerous day, or something. I called both people from VESID and have yet to hear from either. Next week, I will keep at them. I finished my work for NonCreative Writing, just have to type it up! I learned how to make website buttons for my websites. It is pretty fun. When dad got home from work, Brenda got everything ready and set up. We doctored up a Foley with a clip and a bumper plate so hopefully with the new tube, my belly won't try to suck it in anymore. Brenda checked the balloon again and pulled out formula, so it was definetly busted. When she went to pull it, you will never guess what happened, or didn't happen. The dang old busted tube would NOT come out. She pulled and pulled until I yelled "UNCLE". After many tries and much deliberation, we decided to leave it. It isn't leaking, it still works, and it definately won't fall out, we just taped it back down to my belly and turned my food back on. We will call Dr. Bethel on Monday (tomorrow) to have him figure it out.
Yesterday was much a much calmer day for me, thank goodness!!! I learned how to make animated graphics, which was very exciting. I figured out how to make a graphic that has 5 different pictures that alternates between the pictures. It is soooo cool! We sent out our Valentine's cards and only one blanket (to Australia). We also got our hotel room reserved for our trip to Ohio and are getting things lined up for that trip. We leave the 18th of February. I am excited to see my grandma and watch Brenda yell at the doctor. See, it was a pretty normal day!
Today, I am hanging out and working on websites. I filled out paperwork for a scholarship and looked at other ones. Brenda is calling tomorrow morning to make the appointment with Dr. Bethel and also one to see Dr. Proskin (follow-up). Hopefully this week is much smoother and calmer than this past week.
Quote for this Week:
Every day may not be good, but there's something good in every day. ~Author Unknown
MJ
Thursday, January 19, 2006 8:02 PM CST
Hello Everyone:
I got back from seeing Dr. Bach for the first time in 3.5 years!
Everything went well.
First Brenda and I got to meet a new SMA family. Jewel is 6 months old
and absolutely adorable. We got to meet her parents, Dave and April, and 2 of
her siblings. It was great to talk to them and of course meet their family.
The appointment with Dr Bach went extremely well. I have the same vital
capacity as 3.5 years ago. Dr. Bach and Lou concluded that my liquid
albuterol and my 4 nebs are controlling my R.A.D. and we shouldn't change anything. I
spent a long time talking to Lou, the respiratory therapist that works with
Dr. Bach, about everything. Dr. Bach said that he agreed with Dr. Bethel; I'm
an anomaly. I have different strength than both type I and II so I'm
anomaly. I gave Lou, Dr. Bach, and one of the other RTs, Rick a copy of the Faces of
SMA CD. Not much else to report. Oh, Dr. Bach said to tell everyone "hello"!
We're still praying for Payton and Timmy's families.
Quote for Today:
Who will tell whether one happy moment of love or the joy of breathing or
walking on a bright morning and smelling the fresh air, is not worth all the
suffering and effort which life implies. ~Erich Fromm
MJ
Monday, January 16, 2006 7:04 PM CST
Hi Everyone:
Today started off with sad news for the SMA Community. A 5 year old, Payton Freeman, passed away. I was lucky enough to call Payton's family my friends.
Payton, you must have had an important mission here. You and your mommy and daddy touched hundreds, if not thousands, of people. I don't know why you had to leave so very soon, but I just know you're looking down on us with Ryan and all the other angels. Fly down to your family and give them a sign, I've already gotten mine. We'll miss you Payton!
It seems wrong to include good news when good friends are suffering. But I know life must go on...
I got two things of good news recently. Over the holidays, I received a note from Wright State University that said I was accepted, like duh, I already knew that. But upon closer inspection, I noticed that I was accepted in the College of Engineering as a freshman! This usually doesn't happen until at least the beginning of your second year of college. So, I am officially a student in the College of Engineering at Wright State University!!!
Today, after hearing about the passing of my friend Payton, I received an incredible phone call. I was nominated for the Volvo for Life Award and am a finalist. Pearl, from Volvo, called to verify my information and ask me lots of questions. The grand prize winner receives a $50,000 donation to the charity of their choice and a trip to NYC and a role in Volvo's documentary. First price is $25,000 to the charity of their choice. How amazing! The winner will be announced in March. Even if I don't win, I will consider it an honor to have been chosen as a finalist.
For Payton and all the other SMA Angels, in the words of Walt Disney,
"When you're curious, you find lots of interesting things to do. And one thing it takes to accomplish something is courage."
MJ
Thursday, January 12, 2006 7:50 PM CST
I've been busy and forgotten to update.
January 8, 2006
Thanks to everyone who wished me a happy birthday, I loved the phone calls, e-mails, and posts!
I had a great birthday party with my friends. Thanks to Linda Z and the Gensel clan for coming! Linda, I haven't gone through the fabric yet, but I'm sure it is all awesome.
After lunch at Cheeburger Cheeburger, we went shopping! I think we bought out Joann Fabrics. We didn't have time to take very many pictures but I have posted the ones we did take in the photo album.
Thanks again everyone!
January 11, 2006
Helloooo Everyone:
I am home and I have my NEW chair!! It's wonderful and I love it! I've attached two colleges of pictures. We took 36 pictures and (eventually) I will upload them to a photo album. I just didn't want to over load you all.
(We're reading the user manual for the chair. It's hysterical! "Do not attempt to use your power wheelchair in the shower") Anyway, I LOVE my new chair!
We started the process for my new manual chair! We're getting a Dégagé (day-gah-zhay) - http://www.degage.us/index.html ...I'm really looking forward to finally fitting in my manual chair. We didn't take any pictures of me in old manual because it's just scary!
That's all for today!
Saturday, January 7, 2006 9:45 PM CST
Well in less than 2 hours, I will be considered an adult by the government. I don't think much going to change for me in my every day life and yet I am reminded constantly how far I have come.
A little less than 18 years I was born. I came out screaming and have rarely shut up since. ;) I was born to Tim and Beth and was their first child. When I was nine months old, my parents found out that I officially had Spinal Muscular Atrophy. The doctors told my parents to take me home and love me since I would die before I was two. Were they ever wrong! Who would have EVER thought I would make this far!
Today, my organization, B4SMA , sent our 200th blanket! We have only been around for 21.5 months!!!! This is only one of the things I was never supposed to be alive to do. The other day, I was typing up my list of accomplishments for college scholarships. I couldn't believe everything I had done in the past four years. I have so much more that I want to do!
What will come next for me, who really knows but my good friend, Candy, stated it quite well: 2006 is going to be MY year...
1) I turn 18
2) I get my new chair
3) I go to DC
4) I graduate from high school
5) I go out into the world and go to COLLEGE!!!!!!!!
Watch out 2006..here comes MJ! :0)
I need to take a moment to thank the people who have helped me make it so far. My family, I wouldn't be the person I am if it weren't for your constant support and guidance. Brenda, you have been there for EVERYTHING and while you know some stories about me that I wouldn't want repeated, I would NOT be here if it weren't for you. My SMA/Internet family, no words can express what you mean to me and my family. When no one else understands, you all are ALWAYS understanding! My friends, you know who you are (it would take to long to list you by name),I love you guys!
MJ
Thursday, January 5, 2006 3:26 PM CST
The good news is that Brenda made it home safely. She brought home
really cool blankets and some presents (pictures attached).
The bad news is that my chair is done but the truck broke down and it
couldn't be delivered today. BOO HOO!!! GRRR!!!!! I'm not happy.
They called Brenda's cell, so she didn't get the message until she
landed and they were closed already! What a MAJOR disappointment! The
truck broke down with my chair on it and they can't get it off. My dad
was going to drive down to Long Island and get it but they can't get it
off the truck so that wouldn't do any good. Leave it to me to have that
kind of luck, huh? I will, hopefully, be getting it next Wednesday.
We'll let you know!
I want to leave you with a paragraph my friend Victor wrote. Hugs to
all...
"Recently, I saw a commercial. I don't recall what was being
advertised, but this is what I remember. A child reaches out and grabs the sun. The sun becomes a basketball, and a group of children beginning playing. When the smallest child catches the ball, he stuffs in his shirt and the ball and child light up like the sun. As the
screen fades to black, a voice can be heard asking, "How will you illuminate your world?""
Love & blanket hugs,
MJ
Saturday, December 31, 2005 6:18 PM CST
Hi Everyone:
On Wednesday, I had a visit from my friends Me-Me, Shaun, and Lynne. We had a great time visiting and opening gifts. The attached picture is me with my new dragonfly bag from Me-Me. Thanks for visiting you guys!
Today we (Dad, Betsy, and I) drove over to my maternal grandparent's house for Christmas with Christmas with them. It was great! I enjoyed seeing my family and of course getting gifts. I got lots of great gifts from everyone...2 CDs, a book on tape, a computer game, gift certificates, and sooooo much more.
My favorite part was seeing the first pictures of my Aunt and Uncle's baby. From the pictures we think it is a boy! Can't wait to meet baby Henry! Also big news is they bought a new house!!!!! I am hoping I will be able to get into their new house.
Anyway, we had a great time! On Tuesday, Brenda gets back from Iowa. I have been able to talk to her every day on the computer. On Wednesday, I finally get my new chair! YIPEE!! Guess that is all for now!
Quote for Today:
Cheers to a new year and another chance for us to get it right. ~Oprah Winfrey
MJ
Monday, December 26, 2005 5:45 PM CST
Hi Everyone:
We had a good Christmas! I got tons of clothes, a MoGu Joy doll, 2 pictures with sayings (I haven't had time to type up what they say, maybe after the new year) they are awesome though, sheets, keychains, and a new shirt for my Emma doll. The clothes are for my trip to DC and will go great with the clothes I got from my friends the Sykora family! I never mentioned what Brenda got me for Christmas (sorry Brenda!). I got 2 CDs (Jim Brinkman), The Sims 2 - Holiday Edition, a Studs & Spurs 2006 Calendar, I know I'm forgetting stuff. Sorry again Brenda!
Dad and Betsy enjoyed their gifts from Brenda and I too. I think dad liked his Hannah Wiggins doll a lot!
I'm excited for Brenda to come back, only 8 days! But I am having fun with dad and Betsy. Ok, I guess that's all for now!
Wishing you Winter Blessings and Health,
MJ
Saturday, December 24, 2005 4:25 PM CST
Hi Everyone:
I wanted to wish you all a very happy holiday! I have been busy working on homework but decided to take a break to let you all know how special you are to me.
I have been thinking about all of my friends who have an "empty chair" at their tables this year. Whether the "chair" has been empty for years or days I know the pain does not subside. Thinking of all of you at the holidays and all year through!
I am praying for all the kids and adults who are under the weather. Wishing you all a wonderful holiday!
Wishing you Winter Blessings and Health,
MJ
Candles are a gift of light,
A tiny sun, a bit of star.
No other dancer in the night
Dances with such sheer delight,
Little souls serene and bright,
Each a glimpse of what we are
Shining innocent and pure.
~Author Unknown~
Since I didn't have enough cards to send one to each of you, check out Your Holiday Card from MJ
Sunday, December 18, 2005 7:11 PM CST
Hi Everyone:
Today was WONDERFUL! We had Cheryl, Sienna, Lauren and Lauren's mom, Lisa, here for the afternoon. Cheryl is Wyatt's (my dog) first owner and also Sienna's mom. Sienna is 3 ("almost 4!" as she said) and very spunky and fun to be around. Sienna was shy for about 5 minutes and then quickly became friendly. Lauren is my friend from Caringbridge and I had only met her once before. I enjoyed seeing her and her mom again!
We spent the afternoon eating, talking, and most of all laughing. Sienna was lots of fun and especially enjoyed playing with all my dad's dolls. We also exchanged gifts with everyone. I got a really neat glass ornament and pin from Sienna and Cheryl. From Lauren, I got a HUGE (you weren't kidding, Lauren) fleece butterfly pillow. I love everything!
After Lauren and her mom left, Sienna decided to decorate our Christmas tree! She was so cute choosing "the perfect place" for each ornament. The tree looks great!
Attached are two collages of pictures from today! I forgot to get pictures of Lauren and I but enjoy the pictures!
Quote for Today:
Friends are kisses blown to us by angels. ~Author Unknown
Love & Hugs,
MJ
Friday, December 16, 2005 7:34 PM CST
Hello Everyone:
So today was my 2nd Wheelchair fitting! It went very well and I can't wait until I get it home. I didn't get to drive because they didn't want to wire it before knowing if the joystick was in the right place. That is ok though, I did get to move the joystick and check the positioning. I wasn't excited about the headrest positioning but I ended up LOVING it. If you check out the pictures (see link below) you can see how much straighter my head is in my new chair. Let's see what else...Oh! I got to choose a custom color (grape) for my seat, back, and arm rests. Very exciting! As of right now, my next fitting and delivery is January 4th! I'm really looking forward to having my chair for my 18th birthday! If you would like to see some pictures from today, check out - http://www.kodakgallery.com/Slideshow.jsp?mode=fromshare&Uc=a1z30nd.6rak5zq1&Uy=fiv25v&Ux=0
Quote for Today:
Don't be fooled by the calendar. There are only as many days in the year as you make use of. ~Charles Richards
Hugs,
MJ
Sunday, December 11, 2005 7:02 PM CST
Hi Everyone:
Today we attended the CTFSMA's Pancake Breakfast with Santa. It was great to see our friends (although we missed some of you!). Here are some pictures from the event http://www.kodakgallery.com/Slideshow.jsp?mode=fromshare&Uc=a1z30nd.cc5gbzmh&Uy=-9fqx2f&Ux=0
As you can see from some of the last pictures, I received my Senior picture. It is really big, 16x20! The picture came with a gold frame but we decided to change it for something that fit our house decor better. We got the frame at Michael's and I got many compliments on the picture. :) When we got home from shopping, Brenda took some pictures of Wyatt playing in the snow.
Now, I need to send a BIG thank you to my best little buddy, Ethan (and of course mommy, Kelly, and daddy, Jason), for the wonderful Christmas present! I will wear it proudly and always think of Ethan when I do. I will take pictures of me in my Wright State sweatshirt very soon. (Thank you, Candi, for delivering it)
That was my day! I am eagerly awaiting Friday's wheelchair fitting and possibly seeing my friend Lauren M on Sunday. That's all for now!
Quote for Today:
"You are not here merely to make a living. You are here in order to
enable the world to live more amply, with greater vision,
with a finer spirit of hope and achievement. You are here
to enrich the world, and you impoverish yourself if you
forget the errand." --Woodrow Wilson
MJ
Wednesday, December 7, 2005 6:42 PM CST
Ok, I know that I just updated yesterday but I have new, very EXCITING news...I got the following letter in the mail.
December 2, 2005
Dear Margaret:
Congratulations! You have been awarded a four-year Wright State Scholar Academic Performance Scholarship for undergraduate study in the amount of $2,500.00 each year (four-year total of $10,000.00).
YAY!!!!! WOOOHOOO!!! I just had to share my exciting news!
Hi everyone
Not to much to report here in NY. We are preparing for Christmas and upcoming winter season. We did get some very exciting news, hence the fingers crossed.
Brenda got a phone call from my OT Barbara. We were very excited to hear that my next fitting for my wheelchair is next Friday morning!!!!! WOOHOO!!!!!
If you pray, please continue to pray for Madison B and family. Also please hold Morgan S's family in your prayers. Morgan passed away December 4th and will be greatly missed by everyone. Also prayers for Grace C and Erin M who are both hospitalized with pneumonia. So many sick kids, please continue to pray...
Quote for Today:
God always answers our prayers, but sometimes the answer is no. ~Author Unknown
MJ
Thursday, December 1, 2005 5:33 PM CST
Unfortunately, my song is just too appropriate today...
It is with a heavy heart I tell you that Morgan S became an angel early this morning. Morgan will be greatly missed by every person who got to see her beautiful smile. Please pray for her family, Stacy (mom), Bill (dad), her two brothers Zeke and Clayton and the rest of her family. Thank you for the prayers...
We shall find peace. We shall hear the angels. We shall see the sky sparkling with diamonds.
- Anton Chekhov
It is snowing here so the sky is sparkling....
(I was too tired to post this yesterday)
Hi everyone:
My tubie change went great!! First, I got to see Ethan and meet another baby, Christian who also has SMA. I took Christian a blanket and met his mother. Ethan is doing well and was full of smiles. After visiting with Ethan and Christian and Brian Weaver (respiratory therapist who kept following me) I went and had my tube changed.
For the past few weeks, I have been thinking about a way to get around having to be dialated (using a dialator - a metal rod shoved in my j-tube site to stretch it further open - sound painful - it is, extremely painful!). I came to the conclusion that perhaps a foley catheter (used commonly for draining urine out of the bladder) would do the trick. Foley's are stiffer than a regular feeding tube and perhaps could make it past my ever strengthening abdominal muscle (the only muscle that works in my body besides my brain and my mouth)!! Dr. Bethel agreed to try it and sent Emily and a nurse on a wild goose chase. Luckily, for me, the nurse found 2 Foley Catheters in the right size, one with latex and one without. We opted to use the Latex Free one because it was stiffer. After getting everything ready and set up, Dr. Bethel wrestled with my old j-tube, it didn't want to come out, it was stuck and the balloon was disgusting. Dr. Bethel went to insert the Foley but it wouldn't go in....I think all of us were dreading having to dialate so Dr. Bethel told me to take a deep breath...Brenda had to remind me to exhale and as I did, Dr. Bethel pushed the Foley in and it slid right in, HOORAY!!! I forgot to mention, that before Dr. Bethel removed my tube, Brenda gave me Advil and Zofran to help me relax. Despite my nervousness, I felt the urge to giggle! Don't ask me why!!!
So, I am home, in bed, and whiny right now. My abdomen is a little sore but nothing as bad as being dialated!! I'm going to post the update, send out my newsletter, watch CSI NY, get some more happy medicine, and go to bed!
Please send your continued prayers to Ethan and our new little buddy Christian. Also pray for Madison B as she is in the hospital.
MJ
Tuesday, November 29, 2005 3:52 PM CST
Hi Everyone:
I'm disappointed, angry, and more to report the recent news on my new power chair! According to the OT and I quote (in part, from her e-mail) "From the last update I could safely say that we could schedule the 2nd fitting before the holidays but it would most likely be an early 2006 final delivery given the holidays"...And the DME said and I quote (in part, from his e-mail) "The chair is going to Raul's (custom dude) office today. The switch came in yesterday. I guess there was a little delay in shipping due to the holiday. As soon as we have an idea we will set up the appointment." This really REALLY makes me mad! I don't plan on fighting with them because it isn't going to make them move faster. I will be e-mailing at least once a week until I am sitting in my chair in my house. I'll keep you updated and if it comes to it I'll give you all their e-mail address! LOL
On another note I am going to see Dr. Bethel tomorrow afternoon to have my jtube changed. Although I'm not looking forward to it, I will be fine. I'm also going to see my friend Ethan, who will be having gtube surgery tomorrow. If you pray, please pray for Ethan and his family tomorrow. Thank you!
Attached are a few pictures of my grandma and I from yesterday. GJ is going home tomorrow and then going to visit my Aunt in Florida. Have a wonderful week!!
Quote for Today:
"Never argue with a stupid person.
First they'll drag you down to their level,
then they will beat you with experience." ~ Unknown
MJ
Tuesday, November 22, 2005 1:45 PM CST
Hi Everyone:
I hope you all had a wonderful Thanksgiving. I did! I enjoyed spending time with my family and friends. We had so much food but I enjoyed the mashed potatoes and sausage stuffing the most.
We also found out yesterday that my aunt and uncle are having a baby! We are all excited. I can't wait to meet Henry or Hank or Emma! The baby is due in May so I will at least get to see the baby before college.
I also got a Thanksgiving gift, so to speak. When Brenda signed on she had gotten a Google and yesterday, an article came and it is about B4SMA. We had contacted the Evening Leader about baby Charlie the other night after reading his story in the paper. The reporter wrote back saying she would give our information to the family. The only problem is that I am referred to as a "he" in the article. Oh well, it is better than nothing! Below is the article -
Battler Charlie gets support from USA
A TINY baby fighting an incurable disease has captured the heart of a sufferer thousands of miles away.
Four-month-old Charlie Hughes is battling spinal muscular atrophy (SMA), a muscle-wasting disease, and doctors warn he is unlikely to live another year.
But after reading of his plight on the Evening Leader's website, an American teenager with the same illness has been in touch with Charlie's parents, Beccy Lynch and Philip Hughes, and offered vital moral support.
MJ Purk, 17, of Rye Brook, New York, asked the Leader to pass on details of an organisation he set up to give advice and information about SMA.
Blankets for SMA was set up to help children diagnosed with the disease, with MJ and his helpers sending handmade quilts to young patients across the world.
MJ has a severe form of SMA but is one of many young people living beyond doctor's expectations, with the help of cutting-edge treatments. MJ's sister, Emma, died from the disease.
He said: "I saw the article in the Evening Leader about baby Charlie and would like to contact the family. I would love to send Charlie a blanket from my organisation if possible. I would really appreciate it if my contact details could be passed on."
Charlie's father, Philip, said: "It is really nice of this lad to get in touch and we will definitely get in touch. Charlie is a little battler and we have not given up hope for him. MJ is 17 and is living with the disease, so that gives me hope. I will be interested to get in contact with him to find out more. We are going to keep on fighting this."
(Evening Leader - A North Wales Newspapers Title)
Isn't that awesome!? What a wonderful Thanksgiving gift!
Quote for Today:
God gave you a gift of 86,400 seconds today. Have you used one to say "thank you?" ~William A. Ward
MJ
Hi everyone:
I have exciting news that I just have to share, I hope you don't mind. Today I got the most exciting mail I have ever received!!! Do you want to know what I got??? Should I tell you???? HMMMMM, well, OK, you twisted my arm.
I GOT ACCEPTED TO WRIGHT STATE UNIVERSITY FOR FALL 2006!!!!!!!!! (yes, I am shouting) I am officially registered at WSU and have my own email address!!!
Ok, just had to share. Hugs to everyone!!
MJ
Friday, November 18, 2005 9:41 PM CST
Hey Everyone:
Just a quick update. Today GJ, Brenda, and I headed to the mall today for lunch and a little shopping. We ate at Cheeburger Cheeburger (no, I didn't spell that wrong...don't believe me? visit www.cheeburger.com/ ) and had milkshakes! YUM!!!! We went shopping at Barnes and Noble, Payless, and JoAnn Fabrics.
Anyway, this update is mostly to share pictures from today. Attached are 3 pictures - 2 are of a gift I received from Brenda's Aunt of a cross stitch and 1 of GJ (sorry, Kim, she protested!). The cross stitch says "Pray Without Ceasing" and reminds me of cousin, Zachary, when he was a baby, and my grandpa Nelson. Enjoy!
MJ
Tuesday, November 15, 2005 6:04 PM CST
Hi Everyone:
Grandma June (GJ) arrived safely after a loooong trip. With her original arrangements, she was going to miss her connection in Chicago, due to leaving Columbus late, so American Airlines changed her to US Air through Washington-Regan. After she arrived we had lunch at the Skytop Cafe. It was yummy! After we got home GJ took a nap while I read e-mail.
I have some other information I want to share with you all. On Sunday, November 20th, at 8pm EST (7pm CST) on ABC Extreme Home Make Over will air. The episode features the Johnson Family, of Massachusetts. William Johnson has Spinal Muscular Atrophy (SMA) like I do. I would really appreciate it if you would watch the show, and if you would, inform your family and friends to watch the show. For more information on the Johnson Family, visit http://www.boston.com/realestate/news/2005/oct/1002_extreme.html
Let's raise awareness, on a national level, about SMA!!!!!!
Thanks everyone!
Quote for Today:
"Well," said Pooh, "what I like best," and then he had to stop and think. Because although Eating Honey was a very good thing to do, there was a moment just before you began to eat it which was better than when you were, but he didn't know what it was called. ~A.A. Milne
MJ
Hey Everyone:
I have big, and I mean BIG, news!!!!!! I got my letter from the National Youth Leadership Conference...I'm DEFINITELY going to Washington DC from March 13th - the 18th!!!!!! (Sorry, I am over using exclamation marks this update.) I'm really excited about going, meeting the press and congressional people! Woohoo!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I do have to go shopping for professional clothes because, as those of you who have met me know, I do NOT dress up very often. I don't even know where to begin...Luckily I have family members who do! ;o)
My other news is that by Friday my graduation gift, from my dad, will be bought! Want to know what it is??????? I'm going to Virginia Beach for 5 days!!!!!!!! :oD I'm excited about that too!
Guess that is all for now! I'll write another update Tuesday, after grandma arrives! Hugs all around!
Quote for Today:
Success without honor is an unseasoned dish; it will satisfy your hunger, but it won't taste good. ~Joe Paterno
MJ
Sunday, November 6, 2005 8:57 PM CST
Hi Everyone:
We had a great time at the CT FSMA Meeting today! Dad, Brenda, and I followed Me-Me, Lynne, and Shaun to Laurel Gardens (because we had never been there before). When we arrived saw Emma Hope and her dad and Jennifer and Harry. Once inside we got to meet Kelly, Jason, Ethan, & family. Ethan is adorable!!!!! I really enjoyed meeting them and talking to them. I want to thank Kelly and Jason for the beautiful gift! I will treasure it forever!
After the meeting, Dad took Brenda and I out for lunch. It was really yummy! I also bought (with Dad's money, heehee) a Christmas gift for my grandma at Hallmark. After lunch and a little shopping, we went to the gas station to fill up my right tire (it was almost flat) and then headed home. I watched the original "Love Bug"...it was really funny!
Sorry, I forgot to take pictures at the meeting, but attached are 2 pictures of me with my gift from Kelly and Jason.
Quote for Today:
Friends are kisses blown to us by angels. ~Author Unknown
MJ
Thursday, November 3, 2005 5:49 PM CST
Hi Everyone:
Not much to report here but I thought I would send an update. I did "dress up" for Halloween (see picture). It fun to be a Smartie Pants because it made my friends laugh.
I'm looking forward to this weekend because I am going to go to a CT FSMA meeting. I'm looking forward to meeting several of the families I have met online.
On the 15th my Grandma (GJ) is flying in from Ohio. We're all looking forward to seeing her. She is staying until after Thanksgiving so hopefully we will have time to do some fun stuff as well!
Well that is all for now! I have been remiss in putting the quote of the day so I will start again today.
Quote of the Day:
"Be the change you wish to see in the world" ~ Mahatma Gandhi
MJ
Thursday, October 27, 2005 9:24 PM CDT
Hi Everyone:
Just a quick update about tonight. It was pretty good. It mostly consisted of talking, talking, and more talking. I did find out that only 4
Wednesday, October 19, 2005 8:28 PM CDT
Hi everyone:
I’m back from my first wheelchair fitting. It went very well. There is a lot of work left to be done in the custom shop but I will have my chair by Christmas. I was not able to use the mini joy that they bought so I am getting the microlight joy…it is sooo tiny and easy to use, very sensitive. We didn’t get a picture due to the way the loaner one was set up, plus Brenda had to hold my head. There is a lot of custom work to be done…they need to cut an inch off the seat back, add a custom mount for the headrest and the vent and feeding pump, are placing the vent battery under my seat, make the footplates larger, adding a floam filled recessed area in the seat cushion, make a panel and shelf for the back to protect the hardware, making the swing away joystick with a tray cut out to be able to slide the tray on without damaging the joystick, and adapting the tray to my needs. All of this work will take 3 to 4 weeks, so about Thanksgiving time, I should have my second fitting and will be able to drive. It was very comfy though and I was happy. I can’t wait to drive it and be done (of course, once we are done, we are going to start on my new manual chair). Here are a few pictures, sorry we didn’t get more. We will next time though. Hugs to all!
MJ
Saturday, October 15, 2005 2:22 PM CDT
Hey Everyone:
Not much to report but I figured I would update anyway. Today the faculty advisor for the yearbook came to the house. She wanted to show my dad and I how *different* I would look since I decided to use the picture from Virginia Beach in the yearbook. (for those of you who haven't seen it go to http://www.kodakgallery.com/Slideshow.jsp?mode=fromshare&Uc=a1z30nd.97ldmiel&Uy=rgf817&Ux=1 and go to the 4th picture) I agreed that I will look different but I still opted to use the Virginia Beach picture. I'm also going to be writing some poems/something for the yearbook. The theme is star gazing/astrology. My first assignment is to write something about going towards the future and stars...wish me luck!
For the my wheelchair, only 95 hours until my first fitting! How exciting is that!? I will take tons of pictures and will share them Wednesday night or Thursday. I'm sure that it will be a looooong appointment so please pray I'm up to sitting for that long by Wednesday. I guess that's all for today's update. Oh! 2 things, if you have time to read:
First, I don't know how many of you were around when I was sending updates about my cousin Sarah. For those of you who weren't around, Sarah is 8 and has a form of dwarfism along with other complications. She currently doing awesome which is a huge relief to her family.
The reason I'm e-mailing is because Sarah is doing a school project. She has to send a Flat/paper version of herself to family in different areas of the states. Anyway, I got Flat Sarah first and created a website for her. I was just wondering if you guys would be willing to sign the guestmap? http://www.mjthesmaqueen.com/indexFlatSarah <-- go there and click on this button 
. Let me know if you need more directions. Thank you!
Secondly, do you remember the What Can $1 Do fundraiser? Well as of October 14th SMA Support has raised $1081.00! Not bad for an email fundraiser! Please keep the money coming. If I forgot to send you the e-mail, scroll down for more information!
Dear Friends & Family:
We've all witnessed what a single $1 can do if people are willing take a few minutes and mail it. Just think of all of the yellow bracelets that you see around - I hear Lance Armstrong raised more than a million for cancer research. I'm going to try to do the same :0) Ok -- maybe not a million, but heck what about $1,000 or $5,000 or even $10,000. I'm asking you to give a $1 -- not for a yellow bracelet or any bracelet at all but just for the knowledge that you will be helping families and kids living with SMA -- helping them get the proper equipment, medicine or other support that insurance may deny. Or maybe it will just be used to send the kids something to brighten up their day or even to help pay for some of the growing piles of medical bills. Or God Forbid, help the parents pay for the funeral expenses of the child they lost to this disease.
If you feel like you can spare your dollar -- here is what I am asking you to do:
1. Get your $1 (more if compelled)
2. Write SMA Hero MJ or SMA Angel Emma somewhere on that dollar (or any other person who is living or has lived with SMA)
3. Put it in an envelope and send it to
SMA Support Inc.
PO Box 6301
Kokomo, IN 46904-6301
and last but not least
4. Forward this email on to all of your family and friends, if you would please.
Where is your money going?
SMA Support is an all-volunteer, non-profit, 501(c)(3) tax-exempt organization dedicated to providing information and support to family, friends, individuals and caregivers on all aspects regarding the devastating genetic disease called Spinal Muscular Atrophy. You can learn more about SMA Support and SMA by going to www.smasupport.com
Thank you and God Bless!
MJ
Tuesday, October 11, 2005 11:21 AM CDT
Hi Everyone:
Friday's visit to Wright State University (WSU), was great. We arrived at 10:30am and headed to Disability Services to get the paperwork that needs to be filled out, in order for me to receive services. After getting the paperwork, I asked the secretaries how to get to Resident Services (housing)...they couldn't decide how you get there. One said go right, the other said go left. We finally got there. Resident Services was very friendly but it took some time to convince them that I did in fact need an apartment. I had to explain that it was NOT an option for Brenda to stay in another room and that I really do need 24 hour care. After we got that straightened out, I gave Joann, the Resident Services person, some pictures of all of my equipment. So she asked that I call her on Tuesday after she has spoken with her boss and the Disability Services head. I did get Joann to agree that I definitely need an apartment, which is good!
After that, Brenda and I had 2 hours until the Green and Gold Day meeting. So we went to the bookstore and got 2 books to help me with my Economics class. I had a great experiences in the bookstore. Brenda has been working with me to increase my independence in buying things. So she decided to see how they did at the bookstore. I got up to the cash register, and the clerk came all the way around the counter, got my books and money. He then went back around the counter, rang up the prince, and showed me how much money I had given him. After that he came back around, tried to hand me the change (but I can't hold coins) so he put the change in the bag and asked if he could hang the bag on my chair. He even told me where he hung it! I'm not sure how many of you will know what a HUGE deal that was for me. It felt good to know that by needing help it wasn't a bad thing!
After that Brenda and I hung out. It is Homecoming weekend at WSU so we got to see the cheerleaders perform (whoopee) and see the drop dead gorgeous soccer players. They don't have football at WSU so their main sports are soccer, volleyball, and hockey.
Finally it was time for the Green and Gold day meeting. Right as the meeting was beginning my feeding pump started to alarm. "Not now, not now!" I thought. But Brenda got it fixed after about 4 times. The meeting itself was ok, I mostly paid attention to the financial aid lady. Brenda and I opted not to go on the tour as it was 50 degrees and rainy. I introduced myself to the admissions director who said "OH! So YOU'RE the one from New York!" LOL So the rest of the day I was "the one from New York".
After a 30 minute wait the admissions director came to show us how to get to the Russ Engineering Building. He was explaining to Brenda and I how they were adding a new Rec Center and moving the treadmills...Brenda said, with a completely straight face, "Oh, MJ, you can go walk on the treadmills!" I, of course, agreed laughing. The poor admissions director was appalled. He was still in shock as we walked to the Engineering Building, and couldn't believe I wasn't upset when he said "we just walk...oh I'm SO sorry." That stuff doesn't bother me.
The Russ Engineering Building is awesome! Great architecture everywhere (duuuh, MJ, it's an engineering building)! We were split into our individual engineering sections (mechanical and material, bio-med and chemical, and computer science and computer engineering). The Dean of Computer Science and Computer Engineering looked genuinely excited that I was in his group. You know how it is, most people look terrified or discussed, so that was really a treat. The female teacher who accompanied him was kind of rude and I guess not used to disabled people. Anyway, after the introductions in the class room and going over the requirements for Computer Science and Computer Engineering, the Dean came and spoke to me personally. He explained how he had just last year received a grant to do a Ph.D. program in Computer Science for Disabilities (or something like that). I thought that was really awesome and I am looking forward to being a guinea pig. ;) We got to tour the facilities and see some new "products" that are being worked on, including new electronic strips to replace bar codes.
After all of that we went to Steak 'N Shake and had dinner with Tiff, Koda, and Faith. It was great see them all!
That's all for now. I'm going home tomorrow :(. It was too short of a visit and I wish I could stay longer. Hugs to all!
Quote for Friday:
If one dream should fall and break into a thousand pieces, never be afraid to pick one of those pieces up and begin again. ~Flavia Weedn, Flavia and the Dream Maker
MJ
Tuesday, October 4, 2005 8:10 AM CDT
We're off to Ohio (ok, really Pennsylvania for the night) in an hour! I'm excited to see my grandma and to get a feel for what Computer Science involves. I'll also be meeting with Residence Services to talk about housing. Wish me luck in convincing them to give me an apartment. We'll be sure to take a bunch of pictures so I can share them with you all when we get back!
Hugs to all my buddies and hope, those of you subscribed, enjoyed the newsletter!
MJ
Friday, September 30, 2005 4:46 PM CDT
Dear Friends & Family:
We've all witnessed what a single $1 can do if people are willing take a few minutes and mail it. Just think of all of the yellow bracelets that you see around - I hear Lance Armstrong raised more than a million for cancer research. I'm going to try to do the same :0) Ok -- maybe not a million, but heck what about $1,000 or $5,000 or even $10,000. I'm asking you to give a $1 -- not for a yellow bracelet or any bracelet at all but just for the knowledge that you will be helping families and kids living with SMA -- helping them get the proper equipment, medicine or other support that insurance may deny. Or maybe it will just be used to send the kids something to brighten up their day or even to help pay for some of the growing piles of medical bills. Or God Forbid, help the parents pay for the funeral expenses of the child they lost to this disease.
If you feel like you can spare your dollar -- here is what I am asking you to do:
1. Get your $1 (more if compelled)
2. Write SMA Hero MJ or SMA Angel Emma somewhere on that dollar (or any other person who is living or has lived with SMA)
3. Put it in an envelope and send it to
SMA Support Inc.
PO Box 6301
Kokomo, IN 46904-6301
and last but not least
4. Forward this email on to all of your family and friends, if you would please.
Where is your money going?
SMA Support is an all-volunteer, non-profit, 501(c)(3) tax-exempt organization dedicated to providing information and support to family, friends, individuals and caregivers on all aspects regarding the devastating genetic disease called Spinal Muscular Atrophy. You can learn more about SMA Support and SMA by going to www.smasupport.com
Thank you and God Bless!
MJ
Wednesday, September 28, 2005 5:04 PM CDT
Sorry for no updates lately, I am starting to feel a little better. I am on my second round of antibiotics to get this junk out of me. Next week, I am off on a quick trip to Ohio for a college visitation to Wright State University.
On another note, my chair is in and being worked on....I know, don't pass out!! I was supposed to have my first fitting next Friday, the day I am in Ohio, so it will have to wait until the following week (after waiting a year, what is another week, right!) So hopefully in a few weeks, I will be able to send pictures of me with my new wheels.
In school, which I have been absent for the past 2 weeks we had an assignment to find a work of art (book, poem, music, picture, etc) and to respond to it with another work of art of the same type or of a different type. We had to write why we chose the source we did and why we responded the way we did. Here is what I did. Attached is my source with my "why" I chose what I did and the poem I wrote in response to the picture. I hope you enjoy it. 
I chose “The Dream Quilt” by Forever In My Heart as my source. It is a cross stitch pattern that I received as a gift this year. I chose “The Dream Quilt” cross stitch for several reasons. The first reason is because of the words that are in the pattern; Dream, Imagine, Wish, and Believe. Those are words that are very powerful. When I see or hear those words I automatically think of the endless possibilities that the words stand for. I also chose “The Dream Quilt” because of the colors used in the pattern. The colors are vibrant and beautiful, just like the imagery associated with the words. When most people think of the word dream, for example, you do not think of blacks or browns but vibrant colors like reds and pinks. For this reason I think that “The Dream Quilt” by Forever In My Heart is the perfect source for me to respond to. I like to think that if I were a color, no one would ever say I was black or brown but perhaps vibrant shades of blue, like the summer sky, or yellow, like the afternoon sun. These are just some of the reasons I chose “The Dream Quilt” for my source.
“The Dream Quilt” has inspired me to do many things. Because of “The Dream Quilt” I decided to create my own graphics and logos to be put on clothing. http://www.cafepress.com/b4sma/827865 I will use the money from the sale of the clothing to support my organization. I have also decided to write a poem about the words used in “The Dream Quilt”. I hope the poem, along with the clothing, will show the emotions that I feel when I look at “The Dream Quilt”.
Dream of growing old,
Imagine no illness,
Wish for warm, sunny days and cool, starry nights,
Believe it will be all right.
Dream of a caring world,
Imagine we are all equal,
Wish that could be true,
Believe it could be soon.
Dream that tomorrow will be better,
Imagine that you would help,
Wish you would even try,
Believe some day you might.
Dream there would be no difference between your strength and my weakness,
Imagine you would see me for me,
Wish you would look past my different way of moving,
Believe you might just see the truest parts of me.
Dream tomorrow will come,
Imagine the day will start,
Wish to see you soon,
Believe you want to see me too.
Hugs to all!
MJ
Friday, September 23, 2005 6:33 PM CDT
Wednesday, we had a most wonderful day and received the best present ever. One that was so good, that it made us all cry. It is one of those gifts that how do you ever say thank you. (MJ didn't really want to say anything, but this is just too good of a story...one of those wow, goosebump stories that you have to share)
Anyway, MJ has always known that Emma was her guardian angel and can talk to Emma in her dreams when needed. Emma keeps her informed and lets her know that she is still here. Today, another angel was revealed to us....was it Emma or was it her mom or was it someone else.
On Tuesday, September 6th, MJ had typed up an update with this message:
"I also had something REALLY REALLY awesome happen when I got home from school. There was a letter waiting for me informing me that I am a National Scholar and because of this (and other things) I have been invited to the National Youth Leadership Conference in Washington DC. I would (if I go) get to meet my congress people and my senators. SO if I go, I could tell them about SMA. I'm still trying to decide if I should go 1) because it is at the WORST time of year for me, health wise and 2) it is a LOT of money to spend. We'll see and I will let you know what I decide."
A cool and exciting event in itself, don't you agree. Well, after she updated her website and such, a few people emailed MJ telling her how wonderful and what an opportunity it would be to go to DC and to do it if possible. A few people offered to send money to help MJ get there. MJ was in no way asking for money, just commenting on the cost of the event. Thank you everyone who offered to send her money.
A few days after her post, she received a note offering to pay the whole cost for MJ to go, offering to be her "fairy godmother". What does one say to that? It was a total shock and left us speechless. How do you express thanks for the generous gift from someone you have only met in the virtual internet world? Anyway, MJ didn't accept right away, since we needed to make sure that the event was truly "accessible". If you know us, you know that there are two accessibles in this world: the manual chair accessible and the power chair accessible. It seems that it is a go and final arrangements were being made for MJ to attend the conference.
This afternoon (Wednesday), a package was delivered addressed to B4SMA. Inside was a blanket made in honor of Jack (the 8th one made in honor of him). Also enclosed was an envelope addressed to MJ. I opened it for MJ, pulled out the card and out drops a check, made out to MJ for the full amount and then some for spending money for the event. The note asked if the mom (Kathy) could semi-adopt MJ as her child and spoil her since she can no longer spoil Jack!
As you can tell, it was a very emotional day here today. Words cannot express our true feelings and thoughts. It is one of those gifts that will never be forgotten, but how do you say thank you for such a wonderous gift. To express some thanks, MJ made this page today to start to say thank you. http://www.mjthesmaqueen.com/indexAngel
Also, Due to me being a senior this year, I am having trouble keeping up with homework and trying to stay in touch. Because I have been mailing over 100 cards a month to all my friends, I regret to say I won't be doing it for awhile. Instead, I am going to be putting up a newsletter/e-card/monthly hello to everyone who wants it. I have tried to make it kid friendly, so all my little buddies can enjoy it along with their siblings.
If you would like to receive it, please let me know and I will put you on my e-mailing list. Thanks.
Please e-mail me at: TWEETYROLL88@aol.com
MJ & Brenda
Monday, September 19, 2005 6:08 PM CDT
Here is all the news that is fit to print, although not all good news.
Since Friday, we have been doing breathing treatments every 4hrs and started back on liquid albuterol (have I told you how much I LOVE that stuff). Anyway, MJ has some stuff in her right lower lobe, lower sats (92 to 96 during the day and 84 to 95 at night), HR is elevated (liquid albuterol is lowering her HR), fever of 100 to 102, and yellow mucus. Anyway, MJ started on Zithromax this evening. We are all hoping she will kick this bug ASAP!
On a side/happy note, MJ got a letter from Wright State and she will be going to a meeting in October for Computer Science majors. She is pretty excited and is hoping to see her GJ and the rest of her family.
Hope everyone is doing well! Will update again soon!
Brenda
caregiver to MJ, 17, SMA type 1
Friday, September 16, 2005 12:39 AM CDT
MJ has pretty much missed this whole week of school. She went all day
Monday, left early Tuesday due to the heat and all of Wednesday. Yesterday, we
went in but the humidity level was so high we left early. Now, MJ is congested
with her sats a tad lower. She is sleeping now, and hopefully a little
extra sleep will help. Hoping this doesn't head south. Hugs to all!
Brenda
caregiver to MJ, 17, SMA type 1
Monday, September 12, 2005 5:57 PM CDT
I feel terrible that I haven't done the update yet! So, I will do a brief summary with a link to pictures.
Friday we arrived around 6:30pm only to find that Camp Harkness had changed the access code. We met Peg at the gate and all went up to our cabins. Brenda, Peg and I were in Green 3 while Me-Me, Shaun, and Lynne were in Green 4. After meeting Armand and his wife, Debbie, and unpacking we headed to dinner at Papa Gino's with the Cloutie family.
Saturday was the First (perhaps Annual) CT FSMA Family Picnic! We spent the day with the Cloutie family, Johnson family, Barrelle family, and Emma Hope's family (sorry I can't remember your last name). We celebrated Ariana's birthday and got to give Kyle a blanket from B4SMA. A great time was had by all!!!
Sunday we mostly relaxed. Shaun and I put our feet in pans of sand and ocean water and flew kites. Lynne, Brenda, Peg and I visited the pet cemetery and mansion grounds. It was a wonderfully relaxing day!
Monday we had to go home, but not before a final visit to beach. We took a group photo (minus Ariana and Becky :( ). We said good-bye to Peg and headed home!
Thank you to Me-Me for "booking" our rooms, to Shaun for keeping us laughing, to Lynne for helping me fly a kite, to Peg (see Shaun's thank you) and for staying up with me until 1:20am, to Mark for letting us tour his mansion garden (;) and for giving Brenda rides, to Ariana for the birthday cake, to Becky for "baking the birthday cake", to Cathy (I hope I spelled that correctly) for sharing your wonderful family, to Armand (aka Mayor of Camp Harky) and Debbie (aka Mrs. Mayor of Camp Harky) for the kielbasa (sp?), and to everyone for a great weekend!
For pictures, please visit http://www.kodakgallery.com/Slideshow.jsp?mode=fromshare&Uc=a1z30nd.34a9tazp&Uy=b6odq7&Ux=0 or Click Here
Quote for Camp Harkness:
"Outside the open window
The morning air is all awash with angels." -Richard Purdy Wilbur
MJ
Tuesday, September 6, 2005 8:42 PM CDT
Obviously I haven't typed up an update on camping at Camp Hemlocks but I will! I promise.
I had my 1 hour of school today. It was fine. I don't know what I was expecting but I wasn't prepared for the looks I got. It was like the kids all thought I was dying. Oh well! There was one nice thing that happened...a guy I went to kindergarten with, came up to me after the assembly and asked if I remembered him, I was like "ya, you're DayShawn" and he says "noooo, DayKawn" I was like "close enough" (he says he's just messing with me) and picks up my hand and squeezes it...If that is the only nice thing that happens (social wise) all year, I'll be happy.
I also had something REALLY REALLY awesome happen when I got home from school. There was a letter waiting for me informing me that I am a National Scholar and because of this (and other things) I have been invited to the National Youth Leadership Conference in Washington DC. I would (if I go) get to meet my congress people and my senators. SO if I go, I could tell them about SMA. I'm still trying to decide if I should go 1) because it is at the WORST time of year for me, health wise and 2) it is a LOT of money to spend. We'll see and I will let you know what I decide.
That's all for now!
Quote for today:
"When you cry, be sure to dry your eyes,
'Cause better days are sure to come.
And when you smile, be sure to smile wide,
And don't let them know that they have won.
And when you walk, walk with pride,
And don't show the hurt inside,
Because the pain sill soon be gone.
And when you dream, dream big,
As big as the ocean, blue.
'Cause when you dream it might come true.
But when you dream, dream big." ~Ryan Shupe & The RubberBand
MJ
Thursday, September 1, 2005 9:49 PM CDT
I have definitely neglected my journal lately! Sorry about that! I'm heading to Connecticut for camping with Me-Me, Lynn, Shaun, and Peg. I'm so excited!!!!!!!! I will update when I get back with pictures.
I start my senior year on Tuesday. Lucky me, I only have to go to school for 1 hour Tuesday due to the school wanting the 9th graders to have an easy transition from middle school to high school. (Did that make any sense?) So officially I start school Wednesday. I guess that's all for now...
I do want to mention that we are thinking and praying for everyone affected by Hurricane Katrina. We went to the grocery today for camping food. We bought 2 bags of ice and recalled what they said on CNN...So many people were being shot for the things we bought today. I wish there were more we could do. Until we can we will continue to pray for our friends and everybody affected by Katrina...
MJ
Quote for today:
Enjoy when you can, and endure when you must. ~Johann Wolfgang von Goethe
Saturday, August 27, 2005 8:41 PM CDT
Trip to Virginia Beach…
Day 1 – Seaford, Delaware
We headed to Seaford in the morning. We were all very excited, knowing that Virginia Beach was only a day away. We sat in traffic for an hour but other than that it was a great ride. When we arrived at the hotel we saw that Super Wal-Mart and Applebee’s were within walking distance. Wahoo! We checked in and headed to Applebee’s for dinner. We shared chicken fingers, chicken quesadillas, and mashed potatoes.
After dinner we headed to Super Wal-Mart to look for what else, FABRIC!!!! We did find a lot of fabric but decided that the majority of it could wait until after Virginia Beach. We did buy stuff for one blanket with dogs on it because it was too cute to wait. We also got zip lock bags and bungee cords.
We wanted to check our e-mail in the business room when we got back from Super Wal-Mart but there was someone on it. I was extremely bored so Brenda took me to the hot tub and poured water on my feet. We looked in the computer room again but the same lady was there. We decided to walk back to Super Wal-Mart to find a book and get ice cream. We didn’t find any books that interested me but we did find Blue Bunny Ice Cream (my favorite) in individual cups. So we got those and headed back to the hotel. We each ate two cups of ice cream. I wanted to have some hot chocolate but I was disappointed, they didn’t have any. We looked in the computer room again and HOORAY it was empty! So we wrote the following post on www.smasupport.com/guestbook:
Brenda, MJ, Janis
tweetyroll88@aol.com
Wednesday, Aug 17, 2005
Seaford Deleware
Hello all:We are here in Seaford, DE for the night. We hit lots of traffic on the way down but made it this far in 5 hours. Tomorrow we have about 3 to 4 hours left and are going over the Chesepeake Bay Bridge and Tunnel (17 miles long). We will be there tomorrow pretty early and can't wait to see everyone!!!!!!!!!!!
We then headed to bed…I was very excited!
Day 2 – Virginia Beach, Virginia
The word of the day was “WOW”! As we drove across the Chesepeake Bay Bridge and Tunnel (www.cbbt.com) all Janis (Brenda’s mom) and I could say was “WOW”. It was literally awesome! I could hardly contain my excitement and kept saying “YAAAAY” every few seconds. We stopped on the bridge and took pictures and called my grandma and dad. I had to call my grandma because she LOVES the ocean.
We arrived at the Colonial Inn (www.col-inn.com) and quickly parked. If we had arrived much later, we would have been in trouble as the small parking lot was completely full. There was a parking garage but our van is too tall. Our room was GORGEOUS! We had a great view of the ocean and a Jacuzzi (which we never used). We unpacked, organized everything and rested. We called down to the front desk and realized we were the only ones there. I called our friend Kim Sykora (she and her family arrived in Virginia Beach, earlier in the week, for an extended family vacation) and invited her over.
While we waited for Kim, we went over to the souvenir shops across the road. We didn’t buy anything then but found things we would get later. Kim called and we headed back to the hotel. When we got back to the hotel several of the other families had arrived. We said hello and then took Kim up to our room. We chatted for a while and even got a blanket from Kim. We were disappointed that Kim couldn’t bring Charlie but I was glad to finally meet her!
When we were walking Kim out we ran into Laura Stants and her husband, Steve. Laura is the president of SMA Support and, along with Stacy Saville, set up the gathering in Virginia Beach. We said good-bye to Kim and talked with Laura and Steve for a while. We got to meet Laura’s mom, Patty, and Laura and Steve’s daughter, Kaylee. We had dinner with them and then went walking on the boardwalk and Atlantic Avenue with them and their friends, Sarah and Emily. Janis taught Kaylee how to polka to the street performers. It was a great night!
(On a side note: I have known Laura for 7 years and it was wonderful to finally meet her face to face. I didn’t get to tell her how wonderful and special I think she is (mostly because of my own shyness) but I want to thank her and Steve for spending an entire evening with me.)
Day 3 – Virginia Beach, Virginia
When we got up Saturday morning we headed to the “ballroom”. It was the meeting place for the day. We got to see almost all of our friends that were there. We traced handprints for our “quick” fundraiser and handed out bubbles. Thanks to Shawn from Funrise/Gazillion Bubbles (www.funrise.com) for donating all the bubbles! We also passed out the “Faces of SMA CD” to everyone who ordered copies. We met up with William and his family in the hallway. We met him in June while they were in New Jersey. William kept telling us, “I nervous!” We told him that he should give his “nervousness” to us and we would throw it away but he insisted that he find a microwave to cook his nervousness. Unfortunately, there was no microwave to be found, so he placed his nervousness in the refrigerator. We also met a new family and got to give their son, Samuel, a blanket. We, unknowingly, picked the perfect blanket for Samuel. It had sailboats, fish, and whales on it.
After hanging out for a while with everyone, we went to a different room for lunch. We had subs and chips and brownies. It was a great lunch! After lunch, we went on a boat ride! The boat, Virginia’s Jewel (www.virginiasjewel.com/index.htm) was completely accessible and enclosed. It was a good thing it was enclosed because it rained the entire time. It was still a great place to socialize with old friends and meet new ones. Lots of the kids and adults rode on the chair lift on the boat to the second floor while others blew bubbles.
On the way back from the boat (we walked because it was only ½ a mile) we saw a mini-van pass us. Generally this wouldn’t faze us, there were a million cars…it was the people INSIDE the mini-van that shocked us. (LOL) Laura and her family were driving back to the hotel! It was raining and almost all of the kids in wheelchairs/strollers were walking back. It was made even funnier by Brenda who dramatically lifted up her hands at the mini-van as if to say “what the heck!” I guess that we made them feel terrible but we all (who were walking) found it hysterical. (Don’t worry Laura and Steve; we are not mad at you! We still love ya!)
After the walk back to the hotel, I went up to the room to change clothes. I had professional pictures taken (free) by Johnathan’s Journey (www.johnathansjourney.org). I think the pictures turned out great and I will be posting them as soon as I receive the disc. Once I receive the disc, I get to pick one picture that Miss Cindi will give me it in a 16” x 20” gold frame. How cool is that! Thank you to Miss Cindi for taking my pictures and Alicia for the bear and Bible!
After pictures I changed yet again! We also got to meet another new family. Halima also received a blanket and from then on called me the “blankie lady”.
After giving Halima her blanket, we went to dinner with our friend Peg. We walked to Murphy’s Grand Irish Pub (www.murphyspub.com/VirginiaBeach/index.html) for dinner. It was definitely an experience. We had a group of very loud (very drunk) girls sitting at the next table. But the cute guy waiters made up for them! It was a great dinner. On the way back from the pub, we showed Peg the accessible boardwalk and walked down to the ocean. I called Grandma June and had Brenda take the phone down to the water so she could hear the waves crashing ashore.
When we arrived back at the hotel, our friends, Tiff, Kate, and family, were there. As soon as we walked in Tiff handed me her daughter, Faith. As most of you know, I LOVE babies so I was thrilled. I tried to not be greedy and let the other kids hold Faith.
Then we went walking on the boardwalk again, even though it was dark. We found a completely accessible boardwalk down to the ocean (about 10 yards from the water). Janis wanted to go and look at the ocean. She got a little more than she bargained for. By the time she was done “looking” she was soaked clear up to her butt. LOL Our friends, the McDanel’s and the Saville’s, came down to the boardwalk and we all played with bubbles.
We all headed to bed then. It was a great day!
Day 4 – Virginia Beach, Virginia
We got up very early and headed down to the ocean in my beach chair. It was so much fun. Brenda and Janis poured sand and water on my feet. Janis insisted that Brenda pose for pictures in the ocean…inevitability they both got soaked.
We headed back to the hotel. We saw that our friends, the O’Neill’s, were having their pictures taken by Miss Cindi. We stopped in and helped to keep Casey from closing his eyes every time he saw the camera. Thanks to Shawn and the Gazillion Bubbles, Casey kept his eyes open for his pictures. Not to be out done, Casey’s brother Colin wanted bubbles blown for his picture too. We also saw Brian Weaver, a respiratory specialist from New Jersey. We have known him since I was 9 but it was great to see him again. We then headed up to our room, as I was getting very uncomfortable in my beach chair.
After I got situated in my chair, we headed to lunch at the hotel next door (http://www.oceanfrontinn.com/ellingtons.htm). It was great to hang out with everyone and eat some great food! We got to celebrate Charlie and *Angel* Jacob’s birthdays. Thank you to Ange’s friend, Carol Burgess, for providing the wonderful cakes. We gave out one other blanket to a little girl named Lauren. It was great to be able to deliver so many blankets in person.
We finished getting everyone’s handprints and raffled off the finished product. The O’Neill family won the board and we gave the other one to Laura for all her hard work and dedication to the SMA community.
The rest of the afternoon was spent enjoying the karaoke and dancing. As the party was winding down Linda Zuroff brought in Devon and Sidney’s Cole’s Quilt (http://www.our-sma-angels.com/colesquilts/). It was gorgeous!
After that we headed to dinner. Originally we were just eating with Peg but by the time we were done we were with Linda and her husband, Pete, and the entire Sykora family. It was fun to just chat and hang out. I even got to hold Charlie again and play with him.
We then headed to the butterfly release and candle lighting. It was wonderful. I honestly couldn’t describe it better than Laura did. For those of you who didn’t see Laura’s post:
“We were on the boardwalk by the ocean, and it wasn't very crowded yet, and the ocean was crashing and the sun was setting and just watching the kids open their butterflies and seeing some of those butterflies stopping and visiting with some of the kids and parents just did my heart good. You'd think butterflies who had been in envelopes for 3 days would like to get out of there, but many of them didn't, and it really makes you wonder if they didn't know exactly who they were stopping on...some of them stayed by certain people or children for looong periods of time. It really was a beautiful thing to see. After that we passed out the candles. It was a little windy, but we just faced downwind and were fine...I don't know what it is about candles that brings about the solemnity, but it does. I think about what candles do and mean, I think about how one little flame can light other flames that glow around the world, thinking about the impact of one flame. I think about the fragility of one small flame; yet we all know how powerful fire is as it spreads. And how that correlates to our kids and us as people. What an impact one child can have on people who will never meet them. How many things in the SMA world have changed because of Garrett Lewis, or Andrew Slay, or little Arya Singh? Yet how many of you met any of them? What about each of our children? How many lives have been changed because of Jacob Trick or Nathan Barnett or Taylor Costa or Devon Stants or Taleah English or Kaydence Tackett or or or or or? One small, insignificant candle it may seem to some, but even though that one candle may blow out on earth, the other candles they lit and the light they spread continues to grow far beyond what each of us as parents will ever know...”
After that we all headed to a room for pizza. Everyone just milled around and talked. It was great! After eating pizza, we decided to go for another walk down to the water with the McDanel’s. As soon as we got down to the water, it started to thunder and lightening so we all headed back up to the hotel. We stood and talked on the boardwalk until the McDanel’s went in. We then ran into Gene and Casey and went for a walk with them down to the King of Neptune statue that they were building and listened to the music.
That night I literally fell asleep as soon as my head hit the pillow. It was a GREAT day!
Day 4 – Virginia Beach, Virginia
When we got up we had a visit from Avon. Ok, not really, it was Sue O’Neill and her boys’ nurse, Julie. We talked with them for a while and showed them our B4SMA photo album. I then realized that some of our friends were leaving that day. I called one of our friends to make sure that they hadn’t left yet. We decided to meet for breakfast. After breakfast we all headed to the lobby. We said good-bye to our friends and headed out shopping.
The coolest thing I bought while shopping was a rice necklace. It is a single grain of rice with Emma’s name written on it. For a description of the type of necklace I got, visit http://www.nameonricejewelry.com/
After shopping for a while my cousin, Kendra, and her family arrived to take us to dinner. It was great to see Kendra, Toney, and their son Levi again. We had a great dinner and then walked on the boardwalk. It wasn’t a long enough visit but it was great to see them again.
After dinner we went up to Tiff and Kate’s room. I got to see Emma’s square. It is beautiful! Thank you Kim for making it for me!!!
Brenda and Janis wanted to start packing since we were leaving the next day but I didn’t want to sit in the room by myself. So I called up to the O’Neill’s room and asked “Sue, will you baby sit me?” She did and I enjoyed hanging out with them while Brenda packed.
At 10pm there were fireworks on the beach. I didn’t enjoy them as much as I enjoyed watching the other kids. We all hung out talking, not wanting the evening to end. I got to hold William (aka Bob) on my tray and play with him. We said the majority of our good-byes on the boardwalk and didn’t get back to the room until midnight.
Day 5 – Driving from Virginia Beach, Virginia to Seaford, Delaware
I didn’t want to go home! We got up and had breakfast with the Stants. Part way through breakfast Tiff and Kate brought the babies in. I (with Brenda’s help) played trampoline with Faith while Janis played with Matthew.
We said good-bye and loaded up. Janis and I couldn’t believe how quickly we got to the bridge/tunnel. I pouted most of the way to the hotel. The only time I wasn’t pouting was when we were shopping in Michael’s and Super Wal-Mart and when we were having dinner from Ledo’s.
I wish the weekend would have lasted longer but as they say, “all good things must come to an end.” I’ll end this with 2 songs I think describe the weekend to a tee…
“Welcome”
By: Phil Collins
There's nothing complicated about the way we live
We're here for each other, happy to give
Thoughtful we are
Humble beneath the stars
We've everything we need
The moon, the sun
Oh there is more than enough for you, for everyone
All we have we share, and all of us we care
So come on, welcome to our family time
Welcome to our brotherly time
We're happy giving and taking
To the friends we're making
There's nothing we won't do
Welcome to our family time
Welcome to our happy to be time
This is a festival, you know, and best of all
We're here to share it all
There is a bond between us
Nobody can explain
It's a celebration of life
In seeing friends again
I'll be there for you
I know you'll be there for me too
So come on, welcome to our family time
Welcome to our brotherly time
We're happy giving and taking
To the friends we're making
There's nothing we won't do
Welcome to our family time
Welcome to our happy to be time
This is a festival, you know, and best of all
We're here to share it all
Remembering loved ones departed
Someone dear to your heart
Finding love, and planning a future
Telling stories and laughing with friends
Precious moments you'll never forget
This has to be the most beautiful
The most peaceful place
I've ever been to
It's nothing like I've ever seen before
When I think of how far I've come
I can't believe it...and yet I see it
In them I see family
I see the way we used to be
So come on, welcome to our family time
Welcome to our brotherly time
We're happy giving and taking
To the friends we're making
There's nothing we won't do
Welcome to our family time
Welcome to our happy to be time
This is a festival, you know, and best of all
We're here to share it all
And
“Your Heart Will Lead You Home”
By: Kenny Loggins
Sunny days and starry nights
And lazy afternoons
You're countin' castles in the clouds
And hummin' little tunes
But somehow, right before your eyes
The summer fades away
Everything is different
And everything has changed
If you feel lost and on your own
And far from home
You're never alone, you know
Just think of your friends
The ones who care
They all will be waiting there
With love to share
And your heart will lead you home
Funny how a photograph
Can take you back in time
To places and embraces
That you thought you'd left behind
They're trying to remind you
That you're not the only one
That no one is an island
When all is said and one
If you feel lost and on your own
And far from home
You're never alone, you know
Just think of your friends
The ones who care
They all will be waiting there with love to share
And your heart will lead you home
There'll come a day
When you're losing your way
And you won't know where you belong
They say that "Home is where the heart is"
So follow your heart
And know that you can't go wrong
If you feel lost and on your own
And far from home
You're never alone, you know
Just think of your friends
The one who care
They all will be waiting there
With love to share
And your heart will lead you
If you feel lost and on your own
And far from home
You're never alone, you know
Just think of your friends
The ones who care
They all will be waiting there
With love to share
And your heart will lead you
Where you belong
I know your heart will lead you home
Tuesday, August 23, 2005 5:35 PM CDT
WE'RE HOME! Although no one is thrilled to be here. ;) I miss everyone I met terribly. We took over 400 pictures (which I will edit, post, and caption eventually)! I will try to type up a play by play Friday probably. I am going shopping tomorrow and Janis goes home Thursday afternoon. Hugs
MJ
Monday, August 15, 2005 11:51 AM CDT
Quick post before bed! We're off to Seaford ,DE in the morning. We're leaving at 11 and hoping to arrive by 4. Thursday we are heading to Virginia Beach! I can't believe it is time already! Like I said earlier, we are eager to see old friends and make new ones. I will "see" you all Tuesday.
Picture from today at PepsiCo of me, Brenda, Janis, and 2 new friends! ;)
MJ
Hi Everyone:
Yesterday we took Brenda's mom, Janis, to New York City. We had a great time! If you want to see some pictures, visit http://community.webshots.com/album/423371456WPykbq
Wednesday we are leaving for Virginia Beach. We are all very excited. I don't think I will have a chance to update before we leave. I will post when we return from Virginia Beach. Can't wait to see our old friends and make some new ones!
MJ
Quote for Today:
"(They don't understand)
Everybody's busy with their own situation
Everybody's lost in their own little world
Bottled up, hurry it up trying to make a dream come true
(They don't understand)
Everybody's living like there ain't no tomorrow
Maybe we should stop and take a little time
Cause you never really know what your neighbor's going through
(They don't understand)" ~ Sawyer Brown
Thursday, August 11, 2005 5:48 PM CDT
New Pictures Added!!!
Hi all:
OK, what had I said about MJ getting her senior picture taken today....this time the photographer was very nice, but MJ didn't get her picture taken. We arrived a little early and went in and Mike told MJ that she needed to change clothes. What a shocked look we had. All senior pictures are the same here....girls wear a black, off the shoulder velour top (shawl) and boys wear a tux. There was no way I could get MJ changed while sitting in her chair and besides, who would want to wear a shawl that every girl in school has worn for the past 15 years.
So, MJ didn't have to smile pretty and we dressed up for nothing today. UGH!!! Mike is calling the yearbook advisor to ask "NOW WHAT!!!" Tim called the advisor too and are waiting to hear back. It pretty much sucks that they don't let you know before hand that you will have to "disrobe" as they say, in order to have your picture taken. MJ says, "Talk about conformity!" OK, here are few pics that I took today since her outfit wasn't appropriate (one picture being MJ angry about the day). Hugs to all!!
Brenda
caregiver to MJ
Note from MJ: I'm still working on getting the pictures uploaded. Please be patient!!
Hi Everyone:
I'm home from Ohio. I was hoping to update more often while I was there but as you know, that didn't happen. I had a fabulous time with family and friends. I will get some pictures up very soon.
Some highlights from the the trip (somethings may have been posted before):
1) On July 19th, we went to dinner with Mark & Julie (mom and dad to *Angel* David). We went to Max and Erma’s. It was great to see Julie again and to meet Mark. Thank you guys for dinner and I hope to see you again really soon!!!!
2) On July 25th, Brenda and I were able to go to the Nicole Nadeau Golf Tournament in Beavercreek. Nicole has SMA like I do and is nine years old. I took her a blanket from B4SMA and she was the 100th blanket we had sent out/given out. We had lots of fun and hope to go again next year.
3) On July 31st, Brenda and I went to Dayton for a SMA Picnic, hosted by Angel Kaydence's Family. The Lockwoods and the Reeds also came so we got to spend time with them. I definetly want to thank Tiff and Kate and family for a WONDERFUL time. I love you guys and I want to see you again very soon! The Angel Awareness Quilt was BEAUTIFUL and I'm sad that it is so big.
4) On August 3rd, we went to the annual zoo trip. It was wonderful to see Madison and the Fogel's again. We also got to go to Handels Ice Cream for a candlelighting and balloon release to honor those living with SMA and to remember always the angels we have lost. I really want to thank my Aunt Jill and my cousins, Zach and Pete, for joining me. It was lots of fun!!
5) We also designed our own T-shirts and went to the county fair.
It has been quite a summer so far and it isn't over yet! As you can see, only 8 days until I (and Brenda and Brenda's mom) am in Virginia Beach!! We are ALL very excited. I will write again before we leave since we have so much planned to do with Brenda's mom. Hope everyone is having a great summer!
Quote for Today:
"Stick to your gun if you believe in something
no matter what, cause it's better to be hated
for who you are, than loved for someone you're not." ~Van Zant
MJ
Thursday, August 11, 2005 5:48 PM CDT
New Pictures Added!!!
Hi all:
OK, what had I said about MJ getting her senior picture taken today....this time the photographer was very nice, but MJ didn't get her picture taken. We arrived a little early and went in and Mike told MJ that she needed to change clothes. What a shocked look we had. All senior pictures are the same here....girls wear a black, off the shoulder velour top (shawl) and boys wear a tux. There was no way I could get MJ changed while sitting in her chair and besides, who would want to wear a shawl that every girl in school has worn for the past 15 years.
So, MJ didn't have to smile pretty and we dressed up for nothing today. UGH!!! Mike is calling the yearbook advisor to ask "NOW WHAT!!!" Tim called the advisor too and are waiting to hear back. It pretty much sucks that they don't let you know before hand that you will have to "disrobe" as they say, in order to have your picture taken. MJ says, "Talk about conformity!" OK, here are few pics that I took today since her outfit wasn't appropriate (one picture being MJ angry about the day). Hugs to all!!
Brenda
caregiver to MJ
Note from MJ: I'm still working on getting the pictures uploaded. Please be patient!!
Hi Everyone:
I'm home from Ohio. I was hoping to update more often while I was there but as you know, that didn't happen. I had a fabulous time with family and friends. I will get some pictures up very soon.
Some highlights from the the trip (somethings may have been posted before):
1) On July 19th, we went to dinner with Mark & Julie (mom and dad to *Angel* David). We went to Max and Erma’s. It was great to see Julie again and to meet Mark. Thank you guys for dinner and I hope to see you again really soon!!!!
2) On July 25th, Brenda and I were able to go to the Nicole Nadeau Golf Tournament in Beavercreek. Nicole has SMA like I do and is nine years old. I took her a blanket from B4SMA and she was the 100th blanket we had sent out/given out. We had lots of fun and hope to go again next year.
3) On July 31st, Brenda and I went to Dayton for a SMA Picnic, hosted by Angel Kaydence's Family. The Lockwoods and the Reeds also came so we got to spend time with them. I definetly want to thank Tiff and Kate and family for a WONDERFUL time. I love you guys and I want to see you again very soon! The Angel Awareness Quilt was BEAUTIFUL and I'm sad that it is so big.
4) On August 3rd, we went to the annual zoo trip. It was wonderful to see Madison and the Fogel's again. We also got to go to Handels Ice Cream for a candlelighting and balloon release to honor those living with SMA and to remember always the angels we have lost. I really want to thank my Aunt Jill and my cousins, Zach and Pete, for joining me. It was lots of fun!!
5) We also designed our own T-shirts and went to the county fair.
It has been quite a summer so far and it isn't over yet! As you can see, only 8 days until I (and Brenda and Brenda's mom) am in Virginia Beach!! We are ALL very excited. I will write again before we leave since we have so much planned to do with Brenda's mom. Hope everyone is having a great summer!
Quote for Today:
"Stick to your gun if you believe in something
no matter what, cause it's better to be hated
for who you are, than loved for someone you're not." ~Van Zant
MJ
Sunday, July 31, 2005 10:50 PM CDT
Hi Everyone:
I'm sorry for the lack of updates while I have been in Ohio. On Thursday, July 21st, my computer died, not completely, but it just wouldn't let me online. So, a friend of the family fixed my computer but was unable to save all my programs. Thankfully, I still had all my picture files and fundraising info.
On July 25th, Brenda and I were able to go to the Nicole Nadeau Golf Tournament in Beavercreek. Nicole has SMA like I do and is nine years old. I took her a blanket from B4SMA and she was the 100th blanket we had sent out/given out. We had lots of fun and hope to go again next year. (Will post pics as soon as possible)
I have been really enjoying my time with my family, especially my Aunt Jill, grandma June, and my two cousins, Zach and Pete.
Today, Brenda and I went to Dayton for a SMA Picnic, hosted by Angel Kaydence's Family. The Lockwoods and the Reeds also came so we got to spend time with them. I apologize for not having pics yet, but they will be coming soon, I promise. I definetly want to thank Tiff and Kate and family for a WONDERFUL time. I love you guys and I want to see you again very soon!
As of right now, my other website, www.mjthesmaqueen.com will not have any new updates until I can get home and reload the program that I use to update my website, so please bear with me. I will try to update Thursday after we have another SMA get together at the Columbus Zoo followed by Candlelighting at Handel's Ice Cream. Until then, hope everyone is having a great summer and staying cool!
MJ
Tuesday, July 19, 2005 9:40 PM CDT
Saturday, July 16, 2005 11:24 PM CDT
Brenda and I arrived in Ohio yesterday afternoon. It rained a bunch Thursday but not much yesterday until we were ready to go out for dinner. While out for dinner there was a B-17 fighter plane at the airport, so Brenda and I and my cousin Peter went out to look at it. If you want to learn more visit http://www.libertyfoundation.org/index.php
Hope everyone has a good weekend!!
MJ
PS The pics are of the plane & Brenda, me, and my 11 year old cousin, Peter. :)
Wednesday, July 13, 2005 4:44 PM CDT
Hi Everyone:
We're off to Ohio in the morning!! I'm excited to see my family and friends again. I will have computer access but only at night. I have lots of things planned and will try to update at least 3 times. Prayers for Shaun and Olivia who are both undergoing Spinal Fusion today.
MJ
Quote for today:
I travel a lot; I hate having my life disrupted by routine. ~Caskie Stinnett
Sunday, July 10, 2005 5:31 PM CDT
Hi Everyone:
Brenda and I had a wonderful weekend!!!! We spent the weekend with the Reilly and Contento families. We really enjoyed our weekend with them even though we just hung out in the Reilly's room at the hotel. I can't believe how big Connor and Jimmy are! I got to play with some of Jimmy's switches which was fun. Brenda even left me with Karen (Connor's Mom) and Lorraine (Jimmy's Mom) while she and Bill (Connor's Dad) went to get dinner. We stayed at the hotel until 11pm!!!
Today Lorraine, Jimmy and Sharon (Jimmy's Nurse) had to go home so we went over to the hotel around 11:30 and said good-bye. The Reilly clan came to our house and we had a BBQ. It was a great weekend!!
Thank you to the Reilly's and Contento's for coming to visit us and I can't wait to see you again (next year??)! Thank you Jimmy and Connor for the awesome gifts! Thank you Tim and Owen for being so entertaining!!
For pictures from the weekend, please visit pictures from 7/9 - 7/10
MJ
Quote for today:
When we honestly ask ourselves which person in our lives mean the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand. The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares. ~Henri Nouwen
Thursday, July 7, 2005 7:15 PM CDT
Hi Everyone:
I am home from the Lake. I had a great time and got to see some of my family that I didn't think I would see this summer. Sorry for the brief overview of my vacation, so much happened in 2 weeks. On the 25th, I got to go on the fireworks at the lake. They were wonderful!
On the 29th I went to see Dr. Bethel for my jtube change. I was sore for about 2 days after but everything went alright.
On the 30th we (Brenda, my Grandmother and I) went to my cousin, Samantha's VBS Skit. After the first skit my Aunt Maureen went with us to Wal-Mart and Wendy's. We had a great time. On the 31st we went and got Samantha and brought her back to the Lake. We mostly just hung out with my Aunt Vicki and Uncle John who arrived when we were out getting Sam.
Sunday morning we opened up the "sweat shop". We made 4 chenille blankets. After that my grandparents friends came up and the adults (minus Brenda) went on my aunt and uncle's boat. Sam and I goofed around (as you can see from the second collage). After everyone got back, my grandmother cooked while Aunt Vicki, Uncle John, Sam and I played a card game called Zigity . We had lots of fun!
Monday afternoon was kind of boring until about 4pm because everyone (except Brenda, my grandfather, and I) went on the boat. I can't go on the boat because it is too unstable I guess. At 4pm we had quite a bit of excitement. There were 3 baby raccoons in one of our trees. We named them Larry, Moe, and Curly (the littlest one).
Tuesday, my grandparents and Uncle Bob went golfing and Brenda took Sam and I shopping. We had fun and even got 2 Build-A-Bears! I got a purple bear (named Larissa Kassidy) and Sam got a pink poodle (named Lilly Rose). It was great! That afternoon Sam went home.
Yesterday we went to see my Auntie and 1 of our B4SMA volunteers. It was great!!!
Saturday I am having some company. I will be sure and share pictures afterwards. I'm not sure when I am going to Ohio as my powerchair is STILL not here. I guess that is all for now. Prayers for Montanna's family during this time.
MJ
Wednesday, June 22, 2005 7:03 PM CDT
Hi Everyone:
First, I am officially a senior in high school. I don't really know what to think of that. It is hard to believe it really. I finished my junior year on Tuesday (yesterday) with my 3 hr US History and Government test.
Today was great!!!! I finally got to meet Lora, Krystal, Steve, and of course Ryan! I really enjoyed meeting them but I wish the circumstances were different. I think Ryan looked good for just having had spinal fusion. We got to deliver a B4SMA blanket to Ryan (even if he doesn't remember, I hope he will enjoy it). We then went over to IHOP to meet William and Mackenzie's families. Everyone was SO nice!! William (aka Bob) and Mackenzie are sooo cute!!! I loved talking with everyone!! Can't wait to see William and Mackenzie's families in VA Beach! After lunch we went back over to see Ryan and family. They were all really disappointed that Ryan wouldn't be extubated until tomorrow. Hopefully we helped to cheer them up. As we were getting ready to leave, a huge storm hit so we stayed for awhile longer. It was actually cool that we did because I got to see my surgeon who is also Ryan's. Dr. S was surprised to see me and couldn't believe it had already been 7 1/2 years since my surgery. Anyway I enjoyed my day with friends.
Tomorrow I am heading to NJ to the Lake. I will have NO computer access so you will have no updates for 2 weeks. I'm looking forward to taking a break and spending time reading. "See" you in 2 weeks!
MJ
Quote for today:
The sun shines and warms and lights us and we have no curiosity to know why this is so; but we ask the reason of all evil, of pain, and hunger, and mosquitoes and silly people. ~Ralph Waldo Emerson
Monday, June 13, 2005 12:52 AM CDT
Hey Everyone:
Let me first say that I am wrapping up my final fundraiser for the year. My brain is fried and yet I am so nervous about giving my project to someone else. Of course I know that it is in the most capable hands and that my best cyber sister in the whole world will be checking on it while I am away...right, Kim??? Ok enough of that.
Saturday my dad took us all out to The Cheesecake Factory for an early dinner. We had so much food on the table! I tried fried macaroni and cheese...It is was really good!! Brenda and I shared a cheeseburger and mashed potatoes. After dinner, we went over to Whole Foods Market. I am amazed at all the things that can be organic! Then we came home and I took a shower. After shower, we all sat down and watched Spanglish (thanks Dr. P for the recommendation). It was a great movie.
Yesterday, Brenda and I drove to Connecticut to meet with Shaun, Lynne (Shaun's mom), Jeff (Shaun's dad), and Me-Me (Shaun's Aunt and my adopted Aunt) to talk about Shaun's Spinal Fusion. We went to Earthplace, a nature place. We walked on one of trails and looked at all the injured birds. We even got to see an bald eagle from Michigan. Lynne bought lunch for all of us, THANK YOU LYNNE!! All in all I'd say that it was a pretty successful (yet hot) day.
I got some bad news about my new power chair today. It is beginning to look like I won't have it until maybe August. I'm really disappointed with this new place and am beginning to regret the decision to switch companies. I just wish that they would have been more upfront about the delivery date. I'm sorry for the rant. It just seems like everything is going to HE** in handbasket.
Not much else going on this week. We are wrapping up homework and the school year will be over in a little over a week. After school is out, I am heading to the lake. I am excited to spend some time with my grandmother and hopefully my grandfather too. I won't have any computer access while there so don't expect any updates after the 23rd for awhile. Well that is all for now!!
MJ
Quote for today:
Oh, wouldn't the world seem dull and flat with nothing whatever to grumble at? ~W.S. Gilbert
Wednesday, June 8, 2005 5:42 PM CDT
Have you ever had one of those days where nothing goes right??? On Sunday, we went to turn on the air conditioner and of course, following the history of our AC Unit, it wouldn't work!! We have went without AC all week with the temps hitting near 90 degrees. The company could "fit" us in this morning, before noon. Of course, they didn't show up until 2pm but thankfully, got it working quickly. After they left, while doing homework, my bed, which I believe has split personalities started to roll me over (while I was sitting in bed). I laid down and the bed went back to normal and sat back up again. As I sat up my bed blew a gasket and I quickly deflated on the right side. My bed has been having issues for 3 weeks now and I am on my second computer box but now the whole thing is done. Thankfully, the company is overnighting a whole new bed to me tomorrow so I only have to go one night without my bed....I hope I can get comfy tonite?!?!?? That has been my day along with my psycho dog who has been barking at everything/nothing. Until later, stay cool if the weather is hot like it is here!
Quote for today:
God has given you one face, and you make yourself another. ~William Shakespeare
Saturday, June 4, 2005 5:18 PM CDT
14 years ago today...my mom was killed in a car accident. My whole world changed since my mother was my primary caregiver and my best friend. Life was tough as my father had to learn how to care for two disabled children and still earn money to pay for our medical needs. We struggled through different people helping us to survive, but I managed to make it and have continued to thrive.
I'm thinking of you today, Mommy. Thanks for helping me on the SATs today!
Today I had my second SAT. I think that it went well but ya never know. Nothing on my essay from the first test but my guidance counselor and the main proctor have been in contact with the College Board and we shall see. Like I said, I took the test again today and had Brenda hand wrote the essay. I hope I do as well as I did or better this time.
On Friday Brenda and I went to Wal-Mart again to pick up her new glasses. They are awesome!!! I didn't like them at first but now I do. We also found a bunch of fabric and since I had a gift card, we didn't spend ANY money! Special Thank you to Debbie for funding this expedition. ;) I'll be able to make 10 blankets for B4SMA because of you and Payton (and Rob too)!!
Not much else going on! I am typing this up now (3:31PM) but I will probably not get it posted until around 5PM. I'm going to stretch out for a bit.
Prayers for my buddies who are sick!
Love,
MJ
Tuesday, May 31, 2005 11:54 AM CDT
We are back and getting caught up on sleep. Sorry we haven't updated sooner, but we were tired. We think they packed a whole weeks worth of activities into two days!! LOL!!
We left Friday afternoon, earlier than planned since last year it took us an hour to drive 20 miles....of course, it only took 25 minutes, so we arrived at the meeting place way early. We met up with Shaun, Lynne and Me-Me and drove up to camp, after stopping for dinner at McDonalds first. When we arrived, it was thundering so I went inside while Brenda did a quick, rushed job of unpacking before the rain hit. She made it just in time and didn't have to unload the van in the rain. We were supposed to go swimming Friday night, but due to the storm, we just hung out and played games and such. I gave Arianna a blanket from B4SMA . I think she really liked it. Her picture is up on the website already.
We went to bed early (by our standards) at 11 and were up early Saturday morning (I didn't sleep well as my bed was having issues again). I was up in my chair by 7:30 am...unbelievable, isn't it!! We went for breakfast (eggs, sausages, potatoes, waffles, toast, cereal)....I had a waffle, 2 sausage links and some potatoes. It was pretty good. I tried the eggs, but they weren't so hot! After breakfast we all went down to the lake to go fishing. I just watched everyone since it is more fun that way. I think everyone who fished caught at least one fish!! While we were fishing, a few people went on a boat ride. It was a beautiful day, so it was nice to just sit and relax. After fishing, it was arts and crafts time. Last year at camp, they didn't have any tshirts my size, so I came prepared with 2 for me and 2 for Brenda. We tyedyed our tshirts, the cheater style....by taking a bottle and squirting color onto the shirts. After dying Brenda's hands all different colors, it was time for lunch. It was chicken, potatoes, salad. I had 2 pieces of chicken. The potatoes were too spicy, so I didn't eat those.
After lunch there was a storyteller, but I didn't stay long for that. We then went outside and played with bubbles. I had brought everyone a Gazillion Bubbles and gave everyone a bottle of them. We were having so much fun. It was great watching the little kids pop the bubbles. After that it was swim time. I decided not to go swimming because last year, I had muscle spasms for 2 weeks after that....and since I have SAT's this Saturday, I figured it wouldn't be smart to do that. We went to the pool with everyone and Brenda took some pictures. Brenda and I went for a walk. We went down to the lake again and I reclined back, catching some rays! We went to the van and got a snack since I was still hungry and just enjoyed being outside in the beautiful weather. Brenda and I enjoyed the weather so much, we missed the beginning of the carnival games, which was ok, since it turned into a giant water fight. The kids were running around throwing water on the counselors. It was fun to watch but I am glad that my chair didn't get wet....it doesn't do well with water. Are you tired yet, we sure were. We went for a walk along the trails after the water fight to show our new friends the trails. Then it was back for dinner. I wasn't very hungry since I usally don't eat 3 times a day so I only had a dinner roll and cake. They also had ham, potatoes, and salad. Brenda said it was good. After dinner we went back outside and walked around and sat and talked. We had a campfire in the pavillion (since it looked like rain again) at 7:30. The counselors sang songs and we made S'Mores. I didn't have one since I had just eaten cake. We headed back to the lodge and talked some more and just hung out. I was up so long, that my battery on my feeding pump died so it was time to lay down. First though, I let Arianna try out my turning mattress. She was a little scared at first, but she liked it. Then we had to show everyone how I use my lift and get out of my chair. I was asleep at 11:30 (still early for me). I slept like a log Saturday night.
I was up in my chair by 8am on Sunday morning. I slept in until 7:30. Brenda packed some stuff up before breakfast to get a jump on the day. We headed down to breakfast, which was pretty good. I had pancakes and potatoes, but didn't really like the pancakes. I did eat 2 hash brown patties though. (Have you figured out that they love to make potatoes yet???) After breakfast, people could choose between swimming and the challange course. I knew swimming was out and the challenge course involved getting out of my chair, so I hung out while Brenda packed the van up. We also talked to others who didn't go swimming and went and took more pictures of the kids in the pool. We went to lunch and I had a cheeseburger but couldn't eat it so I took Brenda's hotdog and ate that instead. I also had Cool Ranch Doritoes with it. After lunch everyone was saying their goodbyes and packing up. We did take pictures of Joshua with his B4SMA blanket , which are up too.
On the way home we stopped at Comstock Covered Bridge. We got unloaded and went to go up and noticed that the bridge was closed. We did take a few pictures of Shaun and I at the bridge before getting back into the van and heading home. We arrived home around 4pm and got everything unloaded. I was sooo tired, I didn't even go on the computer all night. I was exhausted.
Monday, I was glad it was a holiday. I slept in until 11'ish and finally did go online. Brenda had went on before I woke up and found my SAT scores. Of course, the scores don't have the essay added on, since they are still finding/grading/??? it but as of right now, without the essay, I have an 1860 out of 2400. Not too bad. On the critical reading section, I rank in the 93 percentile in the nation and 94
Thursday, May 26, 2005 8:29 PM CDT
Hi Everyone:
We're going away again tomorrow!! We're off to Family Camping Weekend with Aunt ME-ME, Shaun, and Lynne. I will write when I get back.
Today Brenda and I went to Wal-Mart...Brenda got her eyes checked and ordered new frames. In 6 years, Brenda eyes changed MAYBE 1/10. After that we went fabric shopping. We found lots of great bargains. After Wal-Mart, we headed to JoAnn Fabrics. We didn't find much but we did find something that we just had to get. By the time we were done shopping, we were pretty hungry. We drove over to Applebee's. I had Baja Potato Boats (aka potato skins) and Brenda had a Bacon Cheeseburger. All in all we had a great day!
See ya Monday!!
MJ
Quote for Today:
The important thing is not to stop questioning. Curiosity has its own reason for existing. One cannot help but be in awe when he contemplates the mysteries of eternity, of life, of the marvelous structure of reality. ~Albert Einstein
Wednesday, May 25, 2005 5:30 PM EST
Ok, I'm officially freaking out here!! I just received the following e-mail from College Board (makers of the SAT):
___
Dear Student,
We are writing concerning your scores on the May 2005 SAT Reasoning Test™. You are one of a small number of students who received an essay score of zero due to a blank essay. We have found that some students may have mistakenly used a pen to write the essay portion of the test. Since our answer sheet scanning system is designed to read only No. 2 pencil and cannot read pen, these essays appeared blank.
We are currently reviewing all blank essays. Those written in pen will be read and re-scored using our essay score investigation procedure. The standard $50 fee for essay re-scoring will be waived in these cases. Essays that are truly blank will not be re-scored.
Your original scores have already been reported to you, your high school, and any colleges you designated as score recipients. If your essay is re-scored, your total writing score will be corrected and re-sent to you and all your score recipients. You will be able to view your corrected score on http://click.collegeboard.com/61672666.28286.0.137 within the next three weeks. Shortly thereafter, printed copies of your corrected score report will be mailed to you and your score recipients.
If you wrote your essay in pen, you do not need to contact us for any further action—this process will happen automatically.
We hope you will find your corrected score more encouraging, and we wish you success in your academic future.
Sincerely,
The College Board
____
UGH!!!!!! So here I was, feeling pretty excited that I am going to get my scores soon and in a matter of a few minutes I go into freak out mode. Brenda called the Disability Services section of The College Board but since she is not related to me, I had to talk. In short, the woman (whose name I did not get) said that they don’t know what happened to my essay or even if they have it. I had to file a complaint which will take 2 weeks to be responded to. It will be “investigated” by the Investigations Committee who will respond within 2 weeks. I did ask if I should expect another e-mail after my June SAT and she said she didn't know because "this has never happened before". I plan to wait the 2 weeks and if I don't receive a suitable answer, we will be contacting the media. Sorry, I just really needed to vent. Thanks for reading.
Love,
MJ
*********
Hi Everyone!
I returned from a 5 day trip to Vermont on Sunday. I went to Vermont to speak to my friend Casey’s 2nd grade class. Casey, like me, has Spinal Muscular Atrophy type I (one). Casey is much weaker than I am and has a trach to help him breath. Casey has a younger brother, Colin, who also has Spinal Muscular Atrophy or SMA type I (one).
We (Brenda and I) arrived in Vermont on Wednesday, May 18th, at 3:30PM. When we arrived Sue, Casey and Colin’s mom, gave us a tour of their home. I was extremely enthusiastic because this would be the first time I stayed over at a friend’s house. After the tour and saying hello to Colin and his nurse, Nancy, I went outside to meet Casey’s bus. When Casey got off the bus he was very surprised to see me. I was introduced to one of Casey’s nurses, also named Nancy, and then we went back inside. Around 5PM Casey and Colin’s dad, Gene, arrived home from work. A bit after that Casey and Colin’s aunt, Chris, came over. We spent the rest of the evening talking, watching television, and eating dinner, which was delicious. Around 7PM it was time for Casey to get ready for bed. I “helped” Sue tuck Casey in and then watched American Idol with her and Brenda. I went to bed around 10 so that I would be ready for 2nd grade on Thursday.
Thursday, May 19th, I got up way to early, 6AM!! I got to meet Casey’s night nurse, Terri, and see Julie who is Casey’s nurse that I know from the other times I have visited the O’Neill family. By 7:30 everyone was ready to go to school. Colin stayed home with Nancy and Sue rode with us to Casey’s school. We arrived at school just in time for Morning Meeting. I got to meet all of Casey’s class and his teacher, Mrs. G. I also got to meet one of Casey’s Communication Facilitators. She helps Casey to communicate with his classmates by using a Dynavox. I answered many questions that Casey’s classmates had. All of the questions were very good. For example, “Why can you talk and Casey can’t?” or “Can I catch SMA?” or “Why did Casey get two blankets from your organization?” I was amazed at how well-behaved and thoughtful all the children were. After the question and answer session was over, the kids began to work on their cards for my organization, B4SMA. They also made their own paper Holy Bears. Around 11, we decided that we had better go back to the house and check on Colin. The kids really wanted me to stay longer but I promised to come back the next day. When we got back to the house, Colin and I laid down and played “Shrek 2 – The Board Game” and a SpongeBob game. Colin was so funny and sweet. After the games, we all (except Colin) dozed off while watching Finding Nemo. The rest of the day was pretty uneventful. I played on the computer with Casey, had cheeseburgers, French fries, and ice cream for dinner, and watched television with the boys and Aunt Chris. We didn’t get to bed until 11PM.
Friday, May 20th, I got up early again but I wasn’t nearly as perky about it as I had been the day before. Sue had been debating on whether or not to bring Colin to school because he didn’t have a nurse but decided not to since he had had a rough night. So Brenda and I headed to school. We arrived a little late but still in time for Morning Meeting. I played 2 games with the kids and even remembered some of their names. After Morning Meeting, I showed the kids how I use my computer and how I type. I think they really enjoyed that. We also took a “field trip” to the parking lot to see my van. 5 kids at a time went into my van just to explore. After the mini “field trip” I got to meet the 1st grade reading buddies class. I answered some of their questions and then watched them while they read. Mrs. G’s class begged me to come to lunch and recess with them so I did. The girls and boys wanted me to choose which table to sit at but I kind of roamed from table to table. One of Casey’s friends introduced me to all the lunch monitors, which was really cool because he said something like “This Casey’s friend, MJ and she’s in high school”. At recess I mostly hung out with 3 kids but toward the end of recess I played tag with almost all of Mrs. G’s class. All they kept talking about was Casey and what great friend he was. They all really enjoy having him around. After that I went to hang out with Casey, since he didn’t want to come to lunch. I got to meet his other Communication Facilitator and hear him use his Dynavox. We then went back to class where I read the class 2 stories that I had written when I was in 2nd grade. I got lots of compliments. After I read to them, Mrs. G’s class presented me with hand made cards and a tie blanket for B4SMA. It is so wonderful to see that children really do care about others and want to help in any way they can. After I thanked Mrs. G and her amazing class, I decided that we should probably head back to Casey and Colin’s house. I think kids were really sad to see me go but Mrs. G invited me to come back next year. When we got back to the O’Neill’s Brenda made enchiladas for dinner and we hung out. Around 8PM, Angel Kassidy’s parents, Trina and Rob, arrived. Kassidy was the very first kid to receive an official blanket from B4SMA. Sadly, the day after she received it, she passed away. I enjoyed meeting Trina and Rob and am so glad I got meet them. After Trina and Rob left, we all headed to bed.
Saturday, May 21st, I got up around 10 even though Casey was still sleeping. We had special visitors coming at 1PM so we didn’t do much before that. At 1PM Cari, Jacquie, and Calvin Kelley came over. Jacquie has SMA type III (three) and her mom, Cari, works for the Vermont Make-A-Wish Foundation. Calvin and Jacquie are twins and are wonderful kids. I gave Jacquie her very own B4SMA blanket. I think she really liked it. After saying good-bye to Jacqui, Calvin, and Cari, we went into town for a few things. While leaving the grocery store, a little girl (whom I believe was in the 1st grade reading buddies class) was waving frantically and saying hi to me. It was so sweet. Around 5PM, Brenda, Sue, Aunt Chris, and I headed to South Burlington and went shopping at JoAnn Fabrics. We had great time picking out fabric and even found some to make a cover for the boys’ big O2 tank. After fabric shopping, Aunt Chris took us to Ground Round for dinner. It was really yummy. We had great time with Sue & Aunt Chris!
Sunday, May 22nd, it was time to pack up and head home. I really didn’t want to leave but I had to get back to my house. When I was done getting dressed, Sue brought Casey in and laid him down next to me. Casey’s nurse, also named Sue, covered us with a blanket she had made for B4SMA. After I got up, I played “Life” and “SpongeBob” with Casey on the computer while Brenda packed. Then it was time to go. We pulled out of their driveway at 1:15PM and headed back to New York. I had a wonderful time in Vermont and I can’t wait to go back next year.
MJ
PS Unfortunately, I am unable to post pictures from school at this time. Until/Unless I am sure that I can post these pictures publicly, please enjoy the other pictures!!!
Monday, May 23, 2005 8:54 PM CDT
Hey Everyone:
I am back from Vermont!!!! I will post a full update tomorrow!! For now, the picture above is of me and Casey playing on the computer.
Love,
MJ
Thursday, May 19, 2005 4:26 PM CDT
Hey everyone:
We had a great ride up here yesterday. Very little traffic which was good. Today we went to school with Casey and had a good time. Casey's class made cards for us to send with our blankets and also made a fleece blanket for us. They also decorated their own teddy bears. We are going back tomorrow.
After school, MJ played games with Colin and all of us (except Colin) nodded off while watching a movie.
We will post pictures soon!!
Tuesday, May 17, 2005 6:16 PM CDT
Just had to post a BIG thank you to Mrs. C's class in California! You guys and girls are great!! Be good for Mrs. C, ok? Thanks for being such great kids, all people should be as nice as you all!!
------------
Hi Everyone:
We're leaving in the morning for Vermont. I know that I will have some computer access but I doubt I will be replying or posting much. We ARE taking cameras (digital and old fashioned) so when we return you will be overloaded with pictures. ;)
I'm bringing some surprises to Casey, Colin, and Mrs. Gage's class. I'm also so excited to meet Jacquie, Cari, Calvin, and Trina while we are in Vermont. I think that we are also going shopping. I better get going now...I'll post when we get back!!!
Love,
MJ
Quote for today:
"As I stumble through this life, help me to create
more laughter than tears. Never let me become so
indifferent, that I will fail to see the wonder in
the eyes of a child. Never let me forget that my
total effort is to cheer people, make them forget,
at least momentarily, the unpleasantness in their
lives. And in my final moment, may I hear You
whisper: "When you made My people smile, you made Me
smile."" ~Unknown
Tuesday, May 17, 2005 12:09 PM CDT
Well, we went to the doctor to get Kenalog cream to help reduce the swelling around the tube and Dr. Proskin laughed at us. We didn't have time to change the gauze this morning before the appt so we just got up and left. I removed the gauze and the granulation was gone!!!
YUP, GONE!
3 weeks ago, after much research, we started MJ on cytolog. We know it helped keep a sinus infection/cold away after the SAT's but weren't sure. So, Sunday morning, after MJ's gtube site didn't look any better, I sprayed Cytolog on it in the morning and at night and by this morning, it was 95 one!!! That is why Dr. Proskin laughed at us for going. So, we are now true/firm believers in Cytolog...not sure how much it has done for the immune system but it sure helped for granulation tissue and also the pressure sore on her ear. We actually ordered more yesterday (which will be here tomorrow)!!
Brenda
-----------------------
Hi Everyone:
I wanted to post before I leave for Vermont on Wednesday. I've been doing well. Yesterday I was able to get out to get a haircut and go shopping. It felt good to get out especially since it was so nice out!! My hair looks basically the same, just shorter. I got my first watch that I can wear. It is awesome.
Yesterday when I was getting my g-tube bandage changed, Brenda noticed a lot of blood around my tube. YUCK! It is called granulation tissue. This morning it looked a bit better, but we are going to see Dr. Proskin tomorrow, just in case.
Well I guess that's all for now. I doubt that I will be able to update again before Vermont. I don't know how much computer access we will have in Vermont but if you can, try not to e-mail me while I am away (May 18th - May 22nd). Thanks!!!!
MJ
Quote for today:
"Spring is nature's way of saying, "Let's party!"" ~Robin Williams
Sunday, May 8, 2005 5:10 PM CDT
Hi Everyone:
Sorry about yesterdays lack of update. I was really tired after the SAT and going out to dinner afterward. I *think* I did well on the test but will find out for sure on May 23rd. After the test we went out to dinner. I had raviolis, garlic bread, a few bites of my salad, and a canolli (yes, I know I spelt it that wrong). It was really good.
I had tutoring this morning with Roberta for Precalc. Since then I have just been relaxing, playing the Sims 2, and watching TV. I did watch the movie Duplex. It was kind of stupid. Well I guess thats all for now. Hope all the moms are having a happy Mother's Day, enjoy the time you have with your children...It's over too fast.
PS Thank you to Candy for remembering and for sharing the following poem with me! I love ya Candy!
Your Mother is always with you.
She is the whisper of the leaves as you walk down the street.
She is the smell of certain foods you remember.
She is the flowers you pick.
She is the smell of that special perfume she wore.
She is the cool hand on your brow when you're not feeling well.
She is your breath in the air on a cold winter's day.
She is the sound of the rain that lulls you to sleep.
She is the colors of a rainbow.
She is Christmas morning.
Your Mother lives inside your laughter, and she is crystallized in every tear drop. A mother shows every emotion happiness, sadness, fear, jealousy, love, hate, anger, helplessness, excitement, joy, sorrow, and all the while, hoping and praying you will only know the good feelings in life.
She's the place you came from, your first home.
She's the map you follow with every step you take.
She is the one you run to when you are scared.
Her arms are always open to hold you and console you.
She's your first love, your first friend, even your first enemy but, nothing on earth can separate you.
Not time, not space, not even death.
Happy Mother's Day
Wednesday, May 4, 2005 9:54 PM CDT
I'm home!! Ok, well I've been home for awhile. I had preliminary measuring today. It went very well. I am getting an Invacare TDX5 with tilt, recline, elevating leg rests, seat elevator, and a wireless attendant control for Brenda to drive me if I get tired. I'm getting a Whitmyer headrest and all my seating and headrest will be covered with gel. I'm not sure of the name of my joystick but I am getting a full report from the OT (Barbara) so I will know soon. Oh I picked a color today too. Lollipop Blue although it doesn't look like any lollipop I have ever seen.
I did have to get out of my chair which wasn't fun. Luckily I had brought my sling and they had a lift I could use. It was scary because the DME guy (Joe) decided I needed to sit up on the edge of the mat. It was ok but took three people to hold me and one to measure. I did get a good stretch laying on the mat and seeing what degree my back needed to be set at. Well I think that's all for now. OH! I gave the Joe and Barbara a deadline for my chair, July 15. They are pretty sure they can do that!!! YAY!!!
Will update again Saturday night after the SATs!!!
MJ
Monday, May 2, 2005 9:06 PM CDT
Hi Guys:
WE'RE BAAAACK!!! We had SO much fun with everyone ( The Reilly's, the Potter's, the Gaudreau's, Silvia Murphy with her two little ones and Peg )!!!! We arrived at the hotel at 2 (after delaying ourselves an hour so we wouldn't get there too early). After unloading, Laurie and baby Murphy came over. I got to hold Murphy, she is too cute and very social. A little while later Peg showed up and we hung out and talked about Emma, Taylor, and Marshall. Laurie and Murphy had go home because Murphy was getting cranky (I still say she was really well behaved for a 4 month old).
Peg went over to the Reilly's to pick up our shirts for Sunday and then we went out to Applebees. The waiter tried to offer me a beer but Peg convinced him I was only 17. ;)
Sunday was fun! Cold and rainy but fun!! We got there around 10:30 and hung out with Laurie, Murphy, Mark and Peg. We took a picture of Murphy sitting on my shoulder like I did with Colin O'Neill when he was the same age as Murphy. I just love that little cutie!!! At 11:20 I read my prayer (see end of journal) before the start of the Fun Run. I got lots of compliments on it, one guy said I sounded like a preacher LOL. After my prayer I hung out with the guest of honor, Connor. He is looking wonderful!! I brought him a Boobah which fascinated him. We took pictures together for (I think) the local newspaper. It was so much fun. We also got to see the The Gaudreau's!!!! It was great to see them all. Jenny is so adorable and Michelle is a wonderful big sister (and dog walker)!
After the walk, Brenda and I were *planning* on going shopping and out to dinner buuut, we got very tired and didn't leave the hotel until this morning. We watched "The Toy" and "Grumpy Old Men".Then we had dinner ordered in. It was WONDERFUL!! I was tired so after dinner I laid down and watched Extreme Make over: Home Edition and "Riding the Bus with my Sister".
Well, I think that's all for now for the update. I just want to say thank you to Karen and Bill for having us up and to Laurie and Peg for coming over and to Laurie for letting me play with Murphy!!
MJ
My prayer (pieced together from other places):
" In I Corinthians, Paul makes a wonderful analogy about the way in which Christians should live their lives. He admonishes us to run in such a way as to get the prize. So with that in mind, I wonder where you and I line up in the race. Are we dragging our feet wishing that the race were shorter or less challenging? Or maybe we're not even in the race at all but standing on the sidelines. So, Don't limit Your Challenges - Chanlleng Your Limits to enable yourselves to become living proof that we can achieve much more than what we normally expect of ourselves. We must set goals, both short and long term, and relentlessly pursue them.
I'll leave you with the words of Isaiah, "Those who wait upon God get fresh strength. They spread their wings and soar like eagles. They run and don't get tired, they walk and don't lag behind." Amen! "
Thursday, April 28, 2005 11:37 AM CDT
Hi all:
What a day we had today! The note from the children's hospital was the perfect start to a wonderful day. We will really push for the power chair to get here and done quickly (not sure how much longer the current chair has left before it dies completely).
MJ's guidance counselor called this morning to ask MJ how she wanted to sit...down on the floor or up on the stage. Sounds like a silly question, but if she chose the stage, there were 5 steps to get up! MJ chose the stage...so she went in her manual chair so she could be lifted up.
MJ had 4 male escorts along with Tim pick her up and carry her (chair and all) up the steps to the stage! MJ felt very safe and secure and didn't mind it at all. (Not that she wants to do it anytime soon again).
The ceremony was wonderful. MJ was excited to have two special visitors come to share her day with her. Two adopted aunts: Aunt Linda and Aunt Me-Me came to see MJ get inducted. After the ceremony, we came back to the house for cake. Thank you for coming and sharing MJ's day with her. It really made her special day be even more special.
I am currently uploading pictures into a photo album to share.
To view these pictures go to: http://www.snapfish.com/thumbnailshare/AlbumID=22270981/t_=21328174
There were just too many good photos to send them all through so we are making a photo album. I also took pictures with my good camera, so I can't wait to get those back too.
Hugs to all.
Brenda
Wednesday, April 27, 2005 1:39 PM CDT
Thank you SO much for coming ME-ME and Linda!!!!! Here is a picture, I'm not feeling like typing everything out. Brenda will try to post a full update later tonight but if not I will tomorrow!! Enjoy and thank you again Me-Me and Linda Z!!
I'm going to sign off now! I need to get dressed and settled in my manual chair. I'm going in my manual so that I can go across the stage like everyone else. I am going to be lifted to the stage because my school doesn't have a ramp to the stage (I know, I know). But I am going to make it very clear that this is NOT an option for graduation next year. Hopefully they will get the hint!!! Talk to you all later!
________________________________________
Ok, are you sitting down? If not, please sit before you continue reading...
Are sitting?
Are you sure?
Ready???
MY POWER WHEELCHAIR HAS BEEN APPROVED!!!! HOORAY!!!!!!!!!!!!!!!!! I just had to update really quickly. I will have my preliminary fitting (measuring etc) May 4th at 3pm. What a great gift for my NHS induction, tonight. I'm so excited! *My* adopted Aunt Linda and possibly my adopted Aunt ME-ME are going to come tonight. I will be sure to post pictures if not tonight definitely tomorrow. YAY!!! Ok, that is all for now!
MJ Purk
17, SMA I
Sunday, April 24, 2005 7:26 PM CDT
What a WONDERFUL day I had!!! I met 2 of my CB friends, Lauren and Amanda, at the CT SMArtWalk. We had a great time…It’s funny because I haven’t had friends my age for awhile so it is cool!! We did part of the walk and watched the shows and had a lot of good laughs while confusing the little kids.
The weather was pretty good. Foggy driving up but the sun came out and I got sun burnt…LOL!!! Surprise, surprise, NOT!
Brenda and I entered the 50/50 raffle today. We bought $20 worth of tickets and we won, we won!!!! We got $120!!! What am I doing with the money, you may ask…… It is going to…..ME or rather to B4SMA!! What better way to use the money…so I consider it a donation to B4SMA to help make more blankets!!! WOO HOO!!! Time to go shopping again!!!
That’s all for now, check out my picture page for pictures from the walk today. Oh, Brenda did get home after a long stressful trip yesterday!
Hugs!!!
Wednesday, April 20, 2005 6:18 PM CDT
Hey Everyone:
I'm sorry I haven't posted!!! I was really busy today. I went shopping with my grandmother and dad. We went to lunch at the Macaroni Grill. It was great. We talked about things that are going on with the family. After lunch, my grandmother took me down to Joann's Fabric while my dad paid the bill. I got fabric for 2 cheater quilts for B4SMA. They are really cute!! After Joann's, dad and grandmother took me to get my outfit for NHS. Actually, my grandmother found a top and pants at Lane Bryant. The top is blue with 2 layers and the pants are a very light blue. I can't find a picture of either online. I don't have my digital camera so you will just have to wait a week!! ;) After we bought my outfit, we headed for the car. I forgot to mention the best part!!!!! Grandmother brought me a blanket for B4SMA. Her friend made it for us and is making more. Isn't that awesome?!? Anyway, after we headed back to town, dad and I went to the local fabric store and got fabric for another cheater quilt. It is blue and yellow with kid angles. It is so cute!!! It was really warm here today. The high was 84!!! We're supposed to get rain tonight and cool down. Well, I better get going. I still need to do both my papers for music and finish my PE paper.
Please pray for my good buddy Jimmy, who is in the hospital. Also please pray for Kaydence and Larissa's families, both little girls passed away this month and will be missed terribly.
Lots of love,
MJ
Thursday, April 14, 2005 7:34 PM CDT
Hi Everyone:
I don't really have a reason to update, other than I felt like it. LOL! I got new shoes today (as you can see from the picture).
I'm so excited about my current fundraiser!! I have gotten over 100 CD orders already. Again, if you are interested in more information, check out my fundraising page!!
While Brenda is gone, I have to work on my papers for PE and Choir. For PE, I am writing about SMA and recreation. I think that it will be lots of fun!
Well, I think that is all for now!! I will try and update while Brenda is gone.
Tuesday, April 12, 2005 5:21 PM CDT
Hi Everyone:
Just a quick update!! GUESS WHAT.....I got into The National Honors Society!!!!!!! I'm pretty excited about it as I wasn't sure that I would get in because of my lack of attendance. Anyway, I will be inducted on April 27th at 6pm.
I have been doing so much homework, my brain hurts!!!! Brenda leaves for Iowa on Saturday so we have to do lots before she goes.
I'm getting excited for my upcoming vacations. Due to a scheduling conflict, my trip to Vermont has been delayed a week but at least I get to go. I might get to meet my friends Lorraine and Jimmy before summer vacation which will be lots of fun. Well, I need to go but I will update again soon!! Hugs to all!!
MJ
Quote For Today:
I have never let my schooling interfere with my education. ~Mark Twain
Tuesday, April 5, 2005 6:20 PM CDT
Everyone:
I hope that you are all doing well!! I am! I've been extremely busy lately. I am working on another fundraiser for SMA. If you are interested in more information, check out Fundraising!
In the pic, I'm wearing my " 
" awareness bracelet. They were created to raise money for The Tumbleweed Foundation Emergency Family Relief Fund . For more info visit the above link. Thank you Kody for inspiring this bracelet!!!
Now, back to me! ;) I have a VERY busy few months coming up!
Brenda goes to Iowa: April 16 - 23rd.
FSMA Walk April 24
Connor's Fun Run: April 30 - May 2
May 7: SAT's
May 11 - 15: Vermont, I'm is speaking at my friend Casey's school
May 27 - 29: Family Camping Weekend
June 4: SAT's
June 20 - 25: Finals
June 25 - Sept. 3: Summer Vacation
So if I don't update much, forgive me! Love and hugs to all!
Wednesday, March 30, 2005 12:48 PM CST
Hi Everyone:
Well I know that I have been extremely absent from everyone and everything lately. I actually was in Ohio for 10 days. I know that I didn't tell anyone, but I did have a reason. I just needed to spend some time alone and with family. I enjoyed my time with everyone but did miss you all.
I arrived in Ohio on Sunday at 3pm. I got to see my Aunt Jill and her 2 boys, Zachary and Peter. I also got to see my Grandma because I was staying at her house. Wednesday, I went shopping with Brenda and my Grandma. We had a great time!!!! On Thursday, I got up at 6:45am (a record for me) and drove to the Columbus Airport to pick up my cousin Kendra, her husband Toney, and their 2 year old son, Levi. We went to brunch at Cracker Barrel. It was yummy!!! I spent a lot of time with Kendra and really enjoyed our conversations. Levi was a little leary of me on Thursday but grew to love me. He enjoyed "fixing" my chair and going for rides. We spent a lot of time watching Barney (yuuuuck) and The Incredibles (or The 'Credibles, as Levi would say). I think that I have the entire movie memorized, lol.
We all had a great Easter. We went to church at 9:15 which is the "rockier" version. It was kind of odd because it is held upstairs, not in the Sanctuary. It is called The C.O.R.E but I forgot to look what it stands for. It was odd also because they served coffee and food during the service. Anyway, after church we got to open our Easter Baskets. My basket was the coolest. It had butterflies and dragonflies on it. Everyone got a lot of candy and one other gift. I got wishing stones. Everyone (except Brenda and my Aunt Jill) was on a sugar high by the time we were ready to have lunch. We had ham, turkey, mashed potatoes, green bean casserole, mixed vegetables, sweet rolls, and deviled eggs. Mmmmm! After lunch, we played Scrabble and Euchre (I haven't a clue what that is). We had fun!
I guess that is all for now. Brenda took 3 rolls of real film while in Ohio. When we get them developed, I'll try and post some. Make sure that you check out my picture page for a few pictures!!
MJ
Friday, March 18, 2005 9:27 PM CST
Hi All!
Just wanted to let you know that I will be scarce for awhile. I'm going to start working on building up my immune system for the Spring. I don't know how much time I will have to e-mail and such since I will also be busy with homework. I of course will be checking e-mail and thinking of you all often!! If you need to contact me (and you have the #) please call my cell phone. If I don't answer, leave me a voice mail and I will get back to you ASAP.
The picture above was taken with my new WebCam. My 2 favorite OTs, Karen and Julie, bought it for me. THANK YOU GUYS!!!!!!!!!
Only 3 days until our first anniversary of B4SMA. Tomorrow we are sending 4 blankets out. With those four, our total sent out will be 72 in one year. Things are really looking up for us.
We have also had more people jump in and help us send blanket hugs. Thanks to you who have helped us. It was a big huge help.
I must say a big thank you to our local girl scout troops. Wednesday, one troop leader dropped by the house and dropped off a huge bag of stuffed animals and a bag of fabric. Thank you so much. Thursday, Brenda went to a girl scout meeting and was really surprised at the amount of stuffed animals they collected for us. There were 6 or 7 bags of stuffed animals for me to use for B4SMA. I will be going to both troop meetings later this spring to thank everyone for their help. It is ironic that we received the stuffed animals because my supply was getting worn down and we just figured that we would keep sending blankets but stuffed animals wouldn't be included any more....but now we don't have to worry for a long while. I just really want to thank you the Girl Scouts for all your support. It means SO much to me and the SMA kiddos!!!!
Sorry for the lack of update. I promise to have more news soon. Please say extra prayers for my friends Morgan, Elizabeth and Kaylee!
Quote for today:
Never listen to other people's tendencies to be negative or pessimistic
because they take your most wonderful dreams and wishes away from you -- the
ones you have in your heart!
Always think of the power words have. Because everything you hear and read
will affect your actions!
Therefore: ALWAYS be . . . POSITIVE and above all: Be DEAF when people tell
MJ
Saturday, March 12, 2005 10:23 AM CST
Update Monday, March 14th, 2005 5:00PM CST
Hi All:
The picture above is of me in my Hat for Hope. Please visit SMA Support's Fundraising Page to learn more! Thanks!!!
MJ
****************
Ok, all the news that is the news is here again!
MJ is doing pretty good. Been fairly healthy so that is great. 
Still has issues with post nasal drip and such, but is doing good.
Regarding school: You better sit 
down so you don't faint!!! We have the tests in hand! 
Can you believe it. 
We completed one yesterday and will work on the second one next week!!! Supposedly, the computer should be delivered here this week! I won't believe it till I have it in my hands, though! 
Regarding the PE and music grades, it was a misunderstanding! 
The school wants to change MJ's grades so it looks better on her transcript. We haven't heard about music, but for PE, MJ has to write a paper on health/PE topic for last year and something for this year. They first said 4 for this year and MJ said "NO WAY! 
If I had to do 1 my freshman year and 1 my sophmore year, then why 4 my junior year??" Who knows. Yesterday, MJ registered for the SAT test in May and in June! She also signed up and registered for a school website thing. We were on the computer all day doing those things. 
We also found out MJ's grade point average (weighted, since she is an honors student)! WOW! 
Can you believe, her GPA is 96.520. Hooray for MJ!! 
A 96.52 without being in school. She was very proud of herself and said, just think of what I could have had if I had had a tutor all this time!?!?
We still haven't heard anything about her new powerchair. 
I guess it is time to start 
emailing daily and calling weekly to get this rolling. Last we heard, it hadn't even gone to insurance even though we were told it would hit insurance by her birthday, which is long gone by. UGH!! 
On another note, there is only 
9 days until the first anniversary of B4SMA. 
It is so hard to believe that we have only been around for almost a year!! To date, including the 2 that went out today, we have sent out 68 blankets! 
We have even sent out 1 to Canada and 1 to England now. We are so glad to have all the help that we have and 
thank everyone numerous times for helping us achieve the goal we set out to do, which is send a kid a big ole blanket hug 
from us to let them know that they aren't alone!
Well, I think that is all that is happening here. We are busily doing homework to get caught up, because we know that with our schedule, the time will fly and soon school will be out. Hugs to all. 
Quote for today (added by MJ):
"It is a curious subject of observation and inquiry, whether hatred and love be not the same thing at bottom. Each, in its utmost development, supposes a high degree of intimacy and heartknowledge; each renders one individual dependent for the food of his affections and spiritual life upon another; each leaves the passionate lover, or the no less passionate hater, forlorn and desolate by the withdrawal of his object."
~ Nathaniel Hawthorne's “The Scarlet Letter”
Saturday, March 12, 2005 10:23 AM CST
Ok, all the news that is the news is here again!
MJ is doing pretty good. Been fairly healthy so that is great. Still has issues with post nasal drip and such, but is doing good.
Regarding school: You better sit down so you don't faint!!! We have the tests in hand! Can you believe it. We completed one yesterday and will work on the second one next week!!! Supposedly, the computer should be delivered here this week! I won't believe it till I have it in my hands, though! Regarding the PE and music grades, it was a misunderstanding! The school wants to change MJ's grades so it looks better on her transcript. We haven't heard about music, but for PE, MJ has to write a paper on health/PE topic for last year and something for this year. They first said 4 for this year and MJ said "NO WAY! If I had to do 1 my freshman year and 1 my sophmore year, then why 4 my junior year??" Who knows. Yesterday, MJ registered for the SAT test in May and in June! She also signed up and registered for a school website thing. We were on the computer all day doing those things.
We also found out MJ's grade point average (weighted, since she is an honors student)! WOW! Can you believe, her GPA is 96.520. Hooray for MJ!! A 96.52 without being in school. She was very proud of herself and said, just think of what I could have had if I had had a tutor all this time!?!?
We still haven't heard anything about her new powerchair. I guess it is time to start emailing daily and calling weekly to get this rolling. Last we heard, it hadn't even gone to insurance even though we were told it would hit insurance by her birthday, which is long gone by. UGH!!
On another note, there is only 9 days until the first anniversary of B4SMA. It is so hard to believe that we have only been around for almost a year!! To date, including the 2 that went out today, we have sent out 68 blankets! We have even sent out 1 to Canada and 1 to England now. We are so glad to have all the help that we have and thank everyone numerous times for helping us achieve the goal we set out to do, which is send a kid a big ole blanket hug from us to let them know that they aren't alone!
Well, I think that is all that is happening here. We are busily doing homework to get caught up, because we know that with our schedule, the time will fly and soon school will be out. Hugs to all.
Sunday, March 6, 2005 1:01 AM CST
Sorry 
it has been so long since the last update! We have been pretty busy.
I am feeling better, so thanks for the prayers. I guess it was just the flu and I was such a nice person and didn't share it with MJ.
The 25th, MJ started with a tight chest again and doing nebs every 3 hours instead of 4. Sigh! We held off for the weekend but by Monday the 28th, we had to start antibiotics
again. Also on the 25th, MJ's G tube plugged and nothing would go in or out. 
She needed to vent air since she can't burp anymore, so we did an emergency G tube changed (not to be confused with the J tube change of a couple days before!!). That change went well. We were done in about 15 minutes! Yippee! 
MJ finished antibiotics yesterday and is doing fairly well....still a little chest congestion, but we are back to 5 nebs a day instead of 7 or 8. YIPPEE!!
MJ registered for classes for next year, 
her senior year. She didn't get to take SUPA English, which is 2 college classes, since her teacher wanted her to take AP English. MJ refuses to take AP due to the teacher, who she can't stand. 
This is the teacher that passed her along in 9th grade, without her doing hardly anything. She refuses to take AP and get passed along without doing work. Anyway, she is a little PO'd about that, but said, "WHATEVER!!" 
So, next year MJ is taking Calculus (possibly AP Calculus). She is also taking 6 other classes that are only a semester long. She is taking Creative Writing, Shakespeare, Human Biology I and Human Biology II, Economics, and Sociology. MJ also realized why she totally dislikes the new principal. 
He treated MJ like she had no brain the first three times we met him....anyway, the principal has decided that no kid can graduate with a medical excuse for PE or any class any more...even going backwards....duh! So, MJ's PE and chorus classes have to go back and change all the classes. MJ said it is his evil way to try to get her to NOT graduate since he thinks she doesn't have a brain! Monday is the day that her computer is supposed to be in....we sure as heck ain't holding our breaths on that one. 
I think if it is in, we all would faint from shock! 
Regarding the history teacher, we decided to quit waiting for him. You know, it is a sad day in history when a student has to ASK for homework. We are still waiting a test from Feb. 14th. We decided we won't let him stop MJ from succeeding. Since then, we have done the next section and started on another. Whenever he deems it the right time for the test, he can send it and MJ will do it, until then, we are done asking!! 
We have more important things to do then email him continuously asking for a dang ole test!
Exciting things coming up:
I am going home for vacation from April 16 to the 23rd.
April 24th we are going to Connecticut for the annual SMArt Walk.
April 29th to May 1st we will be in Massachusetts for Connor's Fun Run, where MJ has been asked to say the opening prayer. 
Then either the 11th or 18th of May, we are going to Vermont. MJ has been asked to speak at Casey's school. She is very excited about that.
And finally, May 27th to May 29th is Family Weekend Camping and Camp Hemlocks.
MJ will get to go swimming again! 
Hooray!
What a schedule we have coming up and keeping up with homework! We are praying for healthy times.
Last night we also reserved our hotel room for the SMA Support Gathering in Virginia Beach, VA in August! 
We can't wait. My mom is flying out her and driving down with us. Is it summer yet????
That is it for now. Hugs to all!
Quote for today:
A positive attitude may not solve all your problems, but it will
annoy enough people to make it worth the effort. ~Herm Albright
Wednesday, February 23, 2005 7:29 PM CST
Hi everyone:
What a day!!!! Brenda has been blah the last few days. Today she was so sick that she couldn't take me to Dr. Bethel's. My dad came in my room around 7 to start my nebulizer, I knew that since he was still home something had to be wrong. I laid awake until 9:30 when I suddenly freaked out at started crying. I had never been to Dr. Bethel's without Brenda. All I could think of was everything that could go wrong. My dad just hugged me until I was done. I was still nervous but agreed that it was now or never.
My appointment was at 2:30pm, we arrived at the office at 2:21. Tiffany (the nurse/receptionist) took us right in. We waited and waited and WAITED, meanwhile I was getting cold and clammy hands and thinking about everything that could go wrong (again). Finally at 3:30 Emily came in. Emily is Dr. Bethel's assistant as well as a very nice lady. Emily untapped my tubes and checked my tubes. She said everything looked great. She then went to find Dr. Bethel. Dr. Bethel came in, hugged me, and got ready to look at my tubes.
(Do not read if you have a weak stomach)
Dr. B pulled the jtube out. The end of the balloon was very yeasty (at least I think is what it was) and ragged. Dr. B tried to put the new tube in but it kept bending back at him. So, can you guess what we had to do????? If you guessed dilate it then you are right. I was not very happy. We dilated it 4 sizes before the tube would go in. I didn't cry at all but it did hurt. I now have a mold free (Dr. Bethel agreed that it was probably mold) tubie!!!!
(You can read now even if you have a weak stomach)
So even though I was stressed, everything turned out ok! I had Wendy's for dinner and it was really great! Major prayers for Madison B., Madison R., and Ange, Alyssa, and *Angel* Jacob.
Friday, February 18, 2005 11:57 PM CST
Hi everyone:
As you can tell from MJ's picture and background on her website, MJ is sick! 
Wednesday she felt "off" and "tired". That night, during therapies, her oxygen sats dropped to 63 but nothing could be coughed out. Thursday she didn't feel good, but her sats were ok (as long as I didn't do chest PT), had no fever, heart rate was ok, and no symptoms. We knew something was brewing since MJ didn't want to use the computer!!! We called the doctor and had an antibiotic called in "just in case". Well, Thursday night, after the pharmacy closed, she spiked a temperature and started desatting more frequently.
This morning (Friday), I called the pharmacy and had the antibiotic delivered. Of course, the loading dose always gives her a stomach ache but hopefully, it will kick this (whatever it is) quickly.
We hope she is better by Wednesday so we can head to Jersey 
to get her tube changed out.
Also, the school finally is getting MJ's computer..
..she hasn't had one all year and hasn't had a properly functioning one since her sophmore year. UGH! Also, next week is winter recess and the dang history teacher didn't send the test. 
We have decided to continue on with the work instead of holding up for another week...we will continue to do the work and whenever he "deems" it to be the right time to send the test, she will take it. He moans that she isn't caught up, but how the heck can MJ catch up if she doesn't get the test. 
She has been waiting for the test since Tuesday and now will have to wait until next Monday, the 28th.
Well, that is our update here. Please keep MJ in your prayers along with her other buddies that are feeling under the weather also.
Friday, February 18, 2005 11:57 PM CST
Hi everyone:
As you can tell from MJ's picture and background on her website, MJ is sick! Wednesday she felt "off" and "tired". That night, during therapies, her oxygen sats dropped to 63 but nothing could be coughed out. Thursday she didn't feel good, but her sats were ok (as long as I didn't do chest PT), had no fever, heart rate was ok, and no symptoms. We knew something was brewing since MJ didn't want to use the computer!!! We called the doctor and had an antibiotic called in "just in case". Well, Thursday night, after the pharmacy closed, she spiked a temperature and started desatting more frequently.
This morning (Friday), I called the pharmacy and had the antibiotic delivered. Of course, the loading dose always gives her a stomach ache but hopefully, it will kick this (whatever it is) quickly.
We hope she is better by Wednesday so we can head to Jersey to get her tube changed out.
Also, the school finally is getting MJ's computer....she hasn't had one all year and hasn't had a properly functioning one since her sophmore year. UGH! Also, next week is winter recess and the dang history teacher didn't send the test. We have decided to continue on with the work instead of holding up for another week...we will continue to do the work and whenever he "deems" it to be the right time to send the test, she will take it. He moans that she isn't caught up, but how the heck can MJ catch up if she doesn't get the test. She has been waiting for the test since Tuesday and now will have to wait until next Monday, the 28th.
Well, that is our update here. Please keep MJ in your prayers along with her other buddies that are feeling under the weather also.
Sunday, February 13, 2005 6:42 PM CST
Hi Everyone:
Here I am with yet another update!! I'm doing pretty well. I found out today that my J-Tube balloon is popped. :( I was very nervous but I'm sure it will be ok. I'm still going to Dr. Bethel's on the 23rd to have my J-Tube changed (due to the mold >:-P) so that is good. When I go to Dr. Bethel's, I'm taking pictures of some of his other patients so he can see how well everyone is doing!!
I'm getting ready to register for the SATs in May and June. I can hardly believe I'm going to take them. I'm not very nervous but am ready to get it over with! Oh, I forgot to tell you all what I got on my English Regents...94...Not bad, I definitely could have done worse.
Let's see, what else do I have to tell you...I'm doing a LOT of homework lately. It is rather boring but it has to be done. I'm really only "behind" in history.
I also wanted to tell you that my organization, B4SMA, is quickly approaching it's first anniversary. It is continuing to grow and change with every passing week. We have had a new volunteer and are eagerly awaiting the arrival of many new blankets. To date, we have sent out approximately 50 blankets! Isn't that amazing? If you want check out the website click HERE .
Please pray for all my little buddies who are sick, especially Madison, Kalair, Kyliegh, & Ryan. Feel better soon guys!!!!
Love,
Sunday, February 6, 2005 7:52 PM CST
Hi All,
Thanks Stephanie for reminding me to update! Things have been going ok. Since I went to school, I've been fighting something, buuuut *knocking VERY VERY hard on wood* I haven't needed antibiotics! I'm soooo glad! I think the reason for this is that I started a supplement/vitamin this week. It is amazing the difference I have noticed in myself. I have noticed more energy and better concentration.
I have been really busy helping Brenda make blankets for B4SMA ! We have made 10 blankets this weekend. They are all turning out so wonderful!
Not much else going on besides homework, homework, and oh yeah, homework. I've updated my MJ - The SMA Queen website, so check it out if you have time!
,
Wednesday, January 26, 2005 1:53 PM EST
"We are on a 2 hour delay, so MJ gets to sleep in
until 8:30am. This means her test is now from 10:30
to 1:30pm. ~Brenda"
As Brenda said the test was *supposed* to be
delayed. Well around 8:30, the phone rang. It was my
English teacher, informing Brenda that I had to be
at school by 9:15...WHAT? School was delayed 2
hours, 9:15 isn't a 2 hour delay. So after telling
my English teacher that "this $u**$", Brenda got me
up. We rushed rushed rushed and got ready. We
actually got to the school at 9:22 but the test
didn't start until 9:30. I could have started at
9:30 but I didn't have a proctor. When I did get 1 I
switched proctors 3 times in 10 minutes. The first 1
was cute, made me consider taking Economics. ;)
Anyway, the test was pretty easy today. I'm
attaching (note: to see the essay, visit my writing page by clicking here) the second essay, which was based on a
quote. I hope everyone is feeling better today!
Quote for today (from my test):
“The right good book is always a book of travel; it
is about a life’s journey.” ~H. M. Tomlinson
MJ
~*~*~*~*~*~*~*~*~*~*~*~*~*~*
I'm home! 
The test was ok. Not hard, not easy. 
I had to write about Vaudeville 
and Growing more food, with less water
. Boring! 
I gave my guidance counselor and the school nurse a SMA Support Holy Bear 
. They both really liked it! Well, I'm having some lunch 
and then going to rest 
and watch *my* soap opera. Hope all is well with everyone!
Quote for today:
"The course of life is unpredictable... no one can write his autobiography in advance." ~Abraham Joshua Heschel
~*~*~*~*~*~*~*~*~*~*~*~*~*~*
Well, tomorrow is the big day. The English Regents test. I have to get up at 6am 
!! YUCK!!!!! I shouldn't be at the school for too long. I hope that the test is fairly easy 
.
I woke up with a little cough today and am hoping (
) it isn't the start of something. I'm resigned 
to the fact *if* it isn't anything, I will probably catch 
something at school 
tomorrow and Wednesday.
Hope everyone is well! Prayers for all my sick buddies. Especially Erin, Morgan, and Erinne!
Quote for today:
"Nobody trips over mountains. It is the small pebble that causes you to stumble. Pass all the pebbles in your path and you will find you have crossed the mountain." ~Author Unknown
MJ
Saturday, January 22, 2005 11:14 AM CST
Update, 7:40pm
To see snow pictures, visit My SMA Queen Update Page!
Hello everyone:
It is Saturday, in the cold, 
cold New York! We are getting ready for a bombogenesis of a storm to hit us. 
Last night at 11pm, they were predicting 20 to 30 inches of snow today and tonite. We are in a blizzard warning and a coastal flood warning. 
It is a balmy 5 degrees right now and the windchill is 6 below. 
Knocking on wood here, but MJ is doing pretty good. She is congested some mornings, but is doing ok. 
She has her English regent test Tuesday and Wednesday and isn't too excited about it. 
It is a 6 hour test over 2 days and you have to write 4 essays!! And it starts at 8am both days. She is not looking forward to being at school as she seems to get sick 
everytime she steps foot into the school!
Homework wise, she is doing great. 
We did get the work from the history teacher, but are missing a sheet and so she can't finish the unit yet. UGH! MJ is done with Forensic Science now and has all work completed. YEAH!!! 
English class, she is down from 8 essays last week to only 2 remaining!! Physics is going well, only 3 weeks behind and moving fast. Precalc, she is only a week behind!! Not bad for a weeks worth of work.
Well, we will update Sunday after the storm with pictures to show if we are buried 
or not!! 
Hugs to all!
Friday, January 14, 2005 0:18 AM CST
Hi everyone:
It's Brenda updating this time. MJ is too busy working on her new webpage. 
She is really enjoying 
it and loving it. I think she would work on it all day if I let her. We have been busy working on homework and trying to catch up. Last Thursday, MJ started back on antibiotics for 10 days. She is still fighting it. 
This morning she woke up coughing and has a sinus headache. 
MJ's J-tube needs to be changed already. It is growing mold inside again, YUCK!! It was last changed October 27th....so off to Jersey we go again. We are waiting until February as MJ has Regents English Test on January 25th and 26th. It is a two day test. Each day you have to write 2 essays. 
We are waiting to do the change since we want MJ healthy for the tests.
MJ is working hard at catching up with homework. 
Thanks to her tutor, she is only a week behind in Precalculus. She is also a couple days behind in Forensic Science!!! She is getting caught back up in Physics and figure we can get her caught up in 5 hrs of work...not all in one day, but we can do about a week of work in an hour. 
Of course, we are having problems getting history work again! BOOOO!! 
WE have no clue how far behind he is, since he won't send anything home. MJ has been waiting for a test or work or something. The guidance counselor is working on it. Tell me, 
how is she supposed to stay caught up (when she is healthy) when we have no work to do. 
The dang teacher makes her feel guilty for being sick, like it is her fault. UGH! 
MJ says it makes her feel like she is not worthy of being taught....that he is one of those teachers who thinks she "can't" be smart since she is disabled and not worth his time. MJ has totally "blown" him off. She could care less what he thinks and has moved on, if only she could move on doing homework!!
OK, enough grumbling!! MJ had a great birthday and oops, I guess MJ never told what her secret was!! 
For her birthday, her 2 OT's bought MJ, her own domain. She has been working on it (from above note). MJ the Sma Queen
That was her surprise. 
If your kid has a website, let us know and she will add their website to her friends page. Have fun looking!
Hugs 
to all and stay warm!
Brenda
PS. Here is MJ's quote of the week from her OT, Karen:
An individual has not started living until he can rise above the narrow confines of his individualistic concerns to the broader concerns of all humanity. ~ Martin Luther King Jr.
Sunday, January 9, 2005 1:20 PM CST
Hi Everyone:
Thank you for the wonderful birthday wishes! I had a great birthday. 
I got SO many cards, e-mails, and well wishes! The picture above, is me turning 17 
and me with my gifts 
from Brenda and my dad.
Today, my OT and tutor are coming over. We're just going to "goof around" 
for awhile. I *might* have something cool to share with you all after they leave. 
I know you will love it! 
That's all for now! I hope you are all doing well! I decided that I will end each posting with a quote. So here's today's: (Thanks to Aunty Kim for sharing it)
: I wish the Ring had never come to me. I wish none of this had happened.
: So do all who live to see such times, but that is not for them to decide. All we have to decide is what to do with the time that is given to us.
Friday, January 7, 2005 6:38 PM CST
Well, it's that time of the year again. 
You know what that means, you got it....bad weather 
and antibiotics
!
I woke up Wednesday with a 102 temp and congested and coughing up very colorful stuff 
! YUCK!! Started on antibiotics right away. I'm still running a temp
, feeling sort of crappy
, and tired
. Oh well, what else is new when it comes to my birthday. 
We just finished a winter storm warning on Thursday: only got a bit of snow and some ice..nothing too much. We are now in a winter weather advisory for tonite for ice, sleet, and rain. It's my birthday, what can you say!! 
Thanks to everyone who has mailed me cards 
or gifts 
or emailed me good wishes. Thank you so much to the Belanger Family for my wonderful birthday box from Hugs and Hope. Everything was truly awesome!!! Thank you SMA Support for my balloons 
and bear. Thanks to the Sykora Family for the great flower bouquet 
, you are so awesome! Tomorrow, my dad is bringing in dinner since I don't want to go out and pick up something else (you know, people out there are soooo germy)!
I will close with a card I got just a little bit ago from my neighbor. It sums me up completely, (in my opinion):
Every candle is a light you bring to the world.
Monday, January 3, 2005 4:40 PM CST
Today would have been my little sisters 16th birthday. I can hardly believe it!
I hope you are having a wonderful birthday in heaven, Emma. Do you smell the Angel Wings candle we have lit for you? Hope you invited all the other SMA angels to your party! Big birthday hugs to heaven, Emma! 
----------------------
Hugs From Heaven
When you feel a gentle breeze
Caress you when you sigh
It's a hug sent from Heaven
From a loved one way up high
If a soft and tender raindrop
Lands upon your nose
They've added a small kiss
As fragile as a rose.
If a song you hear fills you
With a feeling of sweet love
It's a hug sent from Heaven
From someone special up above
If you awaken in the morning
To a bluebird's chirping song
It's music sent from Heaven
To cheer you all day long
If tiny little snowflakes
Land upon your face
It's a hug sent from Heaven
Trimmed with Angel lace.
So keep the joy in your heart
If you're lonely my dear friend
Hugs that are sent from Heaven
A broken heart will mend
May the love of friends and family
be a source of comfort to you
at this time
Those who live in the hearts of others....
Never die.
~Author Unknown~
----------------------
With Hope
by Steven Curtis Chapman
This is not at all how
We thought it was supposed to be.
We had so many plans for you
We had so many dreams.
And now you've gone away,
And left us with the memories of your smile.
And nothing we can say
And nothing we can do
Can take away the pain
The pain of losing you, but...
We can cry with hope,
We can say goodbye with hope,
Cause we know our goodbye is not the end, oh no!
And we can grieve with hope
Cause we believe with hope
There's a place by God's grace
There's a place where we'll see your face again.
We'll see your face again!
And never have I known
Anything so hard to understand,
And never have I questioned more
The wisdom of God's plan.
But through the cloud of tears
I see the Father's smile, and say well done.
And I imagine you
Where you wanted most to be,
Seeing all your dreams come true.
Cause now you're home
And now you're free, and ...
We have this hope as an anchor.
Cause we believe that everything
God promised us is true, so....
We wait with hope
And we ache with hope
We hold on with hope,
We let go with hope...
Saturday, January 1, 2005 12:00 AM CST
Picture of me with my stocking from Phi Sigma Rho at Ohio Northern University!
EVERYONE!
Hope you all had a wonderful New Years Eve! Mine was good. I spent it with my very best friend (online) and we talked until 12:30am! So, thank you Aunty Kim for the wonderful start to 
2005! I also got to talk to my uncle Jon, which is always fun!
Let's see...not much else to say.
Brenda comes back tomorrow night 
(
hopefully). They are here a bad ice storm 
where she is so we are hoping she will be able to come back!
OH OH OH!!!!!!!!! ONLY 1 WEEK UNTIL MY 17th BIRTHDAY!
Hope you are all doing well!!!
Love,
MJ
Tuesday, December 28, 2004 2:11 PM CST
Picture of me with Brenda's gifts!
Hello Everyone:
I hope you all had a wonderful Christmas. I did! Many thanks to everyone for the wonderful gifts! I want to thank my grandmother and grandfather, my Aunt Vicki and Uncle John, my Aunt Maureen and Uncle Bob, and my cousins Samantha and Rob for the wonderful gifts. I'm so sorry I couldn't come and see you all but know our door is always open if you want to stop by!
I am feeling a little better which is good! Brenda will be back on Sunday! She is having fun with her mom and nephews. I'm excited she will be back soon.
Tomorrow, my friends, Me-Me, Shaun and Lynne, are coming to visit. I hope to play Mad-Libs and maybe watch a movie. We always have lots of fun and laughs whenever we get together. (Note to Shaun: Sorry, we don't have any "cheese poops" or dinosaur eggs. LOL)
Anyway, I hope everyone out there is wonderful! I will try and update before New Years, but incase I don't...
Love
MJ
Friday, December 24, 2004 10:51 AM CST
Picture of MJ with T-shirt from Brenda!
Update: Christmas Day:
Merry Christmas everyone! 
I hope you are all having a wonderful Christmas. I have gotten some awesome presents! 
My funniest gift was was an Ugly Doll: Ice Bat Keychain. Here is a picture 
Isn't he funny? 
I also got The Princess Diaries: Royal Engagement, LOTS of clothes (my favorite is my Cole's Quilts Baseball T-shirt) and socks. I also got some really interesting butterfly 
stickers...they can stick to my furniture of walls and they are 3D. I also got some more butterflies made out of wire and mesh fabric. Dad said since last year was the year of the dragonfly, this year is the year was the year of the butterfly. I think it was the year of the FUZZY SOCKS! 
I got them from dad and Betsy (his wife), Betsy's mom, and Betsy's brother and sister-in-law. SO NO MORE FUZZY SOCKS! 
I got a bunch of gift certificates. I don't even know what to buy!!!! Anyway, I hope everyone had a joyous Christmas! 
Love to you all,
MJ
Hi Everyone,
I have 2 words for you: Bah Humbug!!!! I'm sick. Yesterday, I woke up with a terrible sinus headache. Anyway to make a long story short, I'm now going to be on Zithromax for 5 days. *sigh* I hope to be feeling better very soon. Hope you all are doing well! I will try and update tomorrow! 
& 
,
MJ
Monday, December 20, 2004 7:25 PM CST
Hello all you wonderful people!
Not much of an update today. Brenda leaves for vacation tomorrow. Last night we exchanged gifts. I got a BUNCH of neat stuff. My background is a picture from a calendar "Studs N Spurs". I also got a package of sparkly butterflies that I'm going to hang from my ceiling. I got big package of butterfly keychains (they are so wonderful). I also got a voice activated remote control but it isn't working yet so we'll figure it out when Brenda comes back on January 2nd. I also got 2 CDs, Rascal Flatts "It Feels Like Today" and Katrina Elam. My favorite song on the Rascal Flatts CD is "When the Sand Runs Out"...Here are the lyrics:
I spent the morning at an old friend's grave
Flowers and Amazing Grace, he was a good man
He spent his whole life spinnin' his wheels
Never knowin' how the real thing feels
He never took a chance or took the time to dance
And I stood there thinking as I said goodbye
Today is the first day of the rest of my life
I'm gonna stop lookin' back and start movin' on
And learn how to face my fears
Love with all of my heart, make my mark
I wanna leave something here
Go out on a ledge, with out any net
That's what I'm gonna be about
Yeah I wanna be runnin'
When the sand runs out
'Cause people do it everyday
Promise themselves they're gonna change
I've been there, but I'm changin' from the inside out
That was then and this is now
I'm a new man, yeah, I'm a brand new man
And when they carve my stone they'll write these words
"Here lies a man who lived life for all that its worth"
I'm gonna stop lookin' back and start movin' on
Learn how to face my fears
Love with all of my heart, make my mark
I wanna leave something here
Go out on a ledge, with out any net
That's what I'm gonna be about
Yeah I wanna be runnin'
When the sand runs out
Isn't that a great song?!?! Anyway, you're going to have to wait for a picture of me with the gifts because I am lending Brenda my digital camera and I'm not positive my dads digital works. I don't want to run out of pictures to share with you all so, you'll just have to wait for pictures!
Today I also got a stocking from Phi Sigma Rho at Ohio Northern University. Again, you're going to have to wait for a picture of me with them!!! I know, I'm mean! It's really special because my grandpa Nelson, who passed away from lung and brain cancer, went to Ohio Northern Universit. It was like Pa was giving me a little sign and saying "Have a merry Christmas, Lovely Lady"...
Oh, I almost forgot! I have been really busy making backgrounds for my friend Amanda . Check out her site and let her know MJ sent ya!!!
Ok, so I lied...this was a REALLY long update. Again, I want to wish you all a very 
and 
!!!!
,
MJ
Friday, December 17, 2004 6:09 PM CST
Things are going ok here. 
The picture above is me with my Christmas gifts 
from my Hugs and Hope elf! I enjoyed waking up (after a little nap 
this afternoon) and opening that HUGE box!!!! So thank you to my elf 
!!!!!!! Here is a picture of me with the decorations. 
from December 14th and 15th, so I'm almost completely caught up. I'm still on oral antibiotics until Monday and Tobi starts the 22nd. Let's see
, I don't have much else new to share. I'll probably update before Christmas, 
in any case, I hope you all have a very Merry Christmas 
and a HEALTHY New Year
! 
,
Monday, December 13, 2004 8:13 PM CST
Hi Everyone,
Sorry I haven't written an update in awhile, things have been sort of busy here. Where do I start...
Well first, I FINALLY got a tutor (Thank you Karen, Julie and especially Roberta)!!!!! Roberta (my tutor) has been here twice and we've done 5 weeks of Precalc! By January I will be completely caught up and that she will start doing more (like calculus work) than my class! WOOHOO!!!
On Saturday, I got a haircut (see picture). I really needed it, I hadn't had one for 4 months! It feels much better.
Health wise: I'm still fighting something. I felt really sleepy this afternoon (after my antibiotics and Zofran) so I took a little rest and am feeling less sleepy. I hope I feel TOTALLY better before Brenda leaves for vacation (the 21st)...If not, at least Tobi starts the 22nd!
The 3 other pictures are: Our candle for the Worldwide Candle Lighting and our Christmas tree!! 
& 
,
MJ
Monday, December 13, 2004 8:13 PM CST
Hi Everyone,
Sorry I haven't written an update in awhile, things have been sort of busy here. Where do I start...
Well first, I FINALLY got a tutor (Thank you Karen, Julie and especially Roberta)!!!!! Roberta (my tutor) has been here twice and we've done 5 weeks of Precalc! By January I will be completely caught up and that she will start doing more (like calculus work) than my class! WOOHOO!!!
On Saturday, I got a haircut (see picture). I really needed it, I hadn't had one for 4 months! It feels much better.
Health wise: I'm still fighting something. I felt really sleepy this afternoon (after my antibiotics and Zofran) so I took a little rest and am feeling less sleepy. I hope I feel TOTALLY better before Brenda leaves for vacation (the 21st)...If not, at least Tobi starts the 22nd!
The 3 other pictures are: Our candle for the Worldwide Candle Lighting and our Christmas tree!! &
,
MJ
Wednesday, December 8, 2004 4:50 PM CST
Hi Everyone:
Just a quick update. The picture above (not the best because I'm sick and cranky) is of me with my new mask. It's called a Mirage Swift and it's very comfortable! I don't know how well it would work at night but I like for daytime use, especially when my lungs are tight and using my mouthpiece doesn't keep them open. It doesn't fall out like the nasal aire (another type of mask) and just rests up against my nose.
Anyway, I don't feel much better but not any worse!! Hopefully I will be feeling much better soon.
My major reason for this update is to tell you about 2 things that are very close to my heart. The first is a shop that is raising money for Cole's Quilts and SMA Support . Cole's Quilts is an organization dedicated to creating cross stitch quilts for kids with SMA. I received my quilt from them and show it to EVERYONE. Here is a picture of me with my Cole's Quilt with the creator of Cole's Quilts .
If you are interested in buying something for charity, visit Cole's Quilts Shop . I created the logo for all the merchandise.
The second thing I want to tell you about is the thing above my journal entry. "In loving memory of all children who are no longer with us, The Compassionate Friends extends an invitation for you, your family, and friends to join tens of thousands of persons around the globe for the eighth annual Worldwide Candle Lighting." Light a candle in honor of any child you know who has passed away. Thank you! Hope you all are having a great week!
Love,
MJ
Monday, December 6, 2004 1:06 PM CST
Hi everyone:
We are back from the docs. We ended up going to see
Dr. Proskin first and then to the podiatrist. MJ
has the beginning stages of pneumonia, so she is on
Avelox for 14 days, decided to do 14, as that will
take her till the 20th, and Tobi starts the 22nd.
We are also going to keep her on the two nasal
sprays for the time being as it did help clear her
nose out (yep, right into the lungs).
The podiatrist went well. MJ still has her
toenail....he just trimmed it down the side where it
was infected and hopes it helps. He thought it was
from her shoes, even though she has been in bed the
past 3 months and it showed up....whatever. All we
hope is that it goes away.
It is snowing here right now. Was snicing, but now
all snow!! Very beautiful!!
TTYL
Brenda
caregiver to MJ
PS The Riley Raffle is complete! And the winner is Kristin Webb!!!!!!!!!!!! Congratulations!!!!!!!!!!!!! It was pulled by our dear neighbor, who works for a law firm. The drawing of the winning ticket was held at her home with a number list here on my lap. The number was 288, and the corresponding name was Kristin Webb. Congratulations again! I will get your doll out to you tomorrow!
The final total isn't in yet but it will be around $1,600!!!! All of it will be going to SMA Support in memory of Emma Clare Purk, Mia Jasmine Haq, and Cole Daniel Webb. The money will be used to buy special food, equipment, or medical supplies for families who can't afford them. Thank you notes will be going out very soon. Thank you again to all who participated and supported this fundraiser, it was a HUGE success!
Thursday, December 2, 2004 8:53 PM CST
Hi Everyone,
Before you read this update, scroll down just past the 
's to see the previous update (by Brenda) so you know what is going on. Anyway, on to my update from today...
Today we went to see Dr. Proskin. The picture is of her and I with the blanket Brenda made for her baby...I picked the fabric. She really liked the blanket. We also brought her a SMA Support Holy Bear . She loved that too! So, my sinus infection is still there. The bleeding taste/sensation has subsided because I discontinued my nasal spray. There is a major draw back though...I have difficulty breathing through my nose occasionally. This is problem because that is how I am ventilated at night (via a nasal mask). Dr. Proskin gave me two samples of meds to try. One is a saline based spray with an added gel, the other is an antihistamine nasal spray. Hopefully one of them will help! Had some bad news too though. I have an infection on my left big toe. Dr. P made an appointment for me to see the Podiatrist on Monday. She thinks he may have to remove my entire toenail because the infection is reoccurring. I'm a bit nervous because my feet are very sensitive. I will definitely let you all know how it goes! Well that's all for now! 
Prayers for my cousin, Sarah, and all my other sick buddies. 
Love,
MJ
Hello all:
Well, today was a wet and windy day for a wheelchair
appt. We got to the hospital early (left early due
to heavy rain and potential flooding) and didn't
have a problem. Ran into the physiatrist, who will
be signing off on the chair, and talked him into
doing foot splints for MJ to use in bed, as she is
starting to get some breakdown while in bed.
MJ didn't get to test drive the chair, but at this
point after waiting 3 monts for them to get the
chair in, we said screw it, we like the chair, lets
just get the dang thing ordered....they had the
chair but no alternative joysticks.
We are getting the Invacare Storm TDX4 (see attached
picture). It will have power elevator, recline,
tilt, elevating legrests, and alternate leg rest, so
MJ can raise one at a time if she wants too! She
will also be getting a seat back with a custom level
lumbar support, that by twisting knobs, the lumbar
support can move up or down and inflate or deflate
to her comfort. She will be getting a mini joystick
with a remote attendant control. All of the above
functions will be able to be run through her
joystick, so she will be independent!!! YIPPEE!!
All of the surfaces of the chair (seatbelt, chest
strap, headrest, arm rests will be covered first
with gel and then fleece for maximum comfort! The
seating system is going to be done by Medbloc so we
are excited to work with their system...it looks
really cool.
Well, that is all for today. Long day, we were
there at 9:30 and got home around 1pm. MJ and I
were exhausted and took a 90 min nap this
afternoon...had to wake up because MJ couldn't
breathe through her nose, YIKES! We are going to go
see Dr. Proskin tomorrow, to deliver the blanket and
have MJ checked out. TTYL!!
Brenda
caregiver to MJ
Tuesday, November 30, 2004 5:22 PM CST
Hi Everyone,
On Saturday I received 
a much anticipated quilt
from the Quilting Angels 
. It is absolutely
beautiful! I've added a few pictures to my photo album.
Today we got a new front door
. Wyatt is enjoying
the new big front window
. There is also a picture of him,
smiling!
Tomorrow I am going to Blythedale for a test
drive of a wheelchair . I'm really excited! 
Hope
everyone had a great day!
Love,
MJ 
Wednesday, November 24, 2004 6:06 PM CST
OH MY GOODNESS! Thank you to Lisa, Billy, and Bill for the butterfly! It's beautiful! But why did you do that? I love it so so much! I'm going to hang it on my ceiling so I can see it all the time! You guys are wonderful!
Love you! 
Just thought I would update you on MJ this time. She finished her 5 days of Zithromax, but as MJ had previously said, this infection seems to have found a home 
in her nose, 
and is still there. We are going to do 5 more days of Zithromax to see if it will kill it. Who knows ...we are at a loss here as what to do next....she is on Sudafed, Tylenol Sinus, Rhinocort AQ nasal spray, saline spray, and vicks inhaler as needed. 
We are in the process of lining up a tutor 
for Pre Calculus. We finally got caught up in Physics (I had to study for about 12 hrs online to figure out how best to teach MJ what she needed as it has been about 20 years since I took Physics. We did a month worth of Physics in 3 hrs!!!! Precalc is straining my brain too much, and listening to the tapes of class aren't much help and the notes don't do much either. UGH!
MJ got her report card yesterday for the first quarter. She received a 95 in PreCalculus Honors, a 95 in Forensic Science, and a 98 in 11th English Honors. She got an INC in Physics and History. We are waiting to hear about the Physics grade since she is now caught up and the History teacher finally sent all the homework and tests home so we can get caught up and she can get her grade. Not bad as she had missed 37 out of 45 days in the quarter!!!!!!!!
That's about all for now. Have company coming tomorrow and are hoping everyone is healthy so MJ doesn't catch anything else!
Hugs to all
Brenda
That was Brenda's update. She forgot to say some stuff but that's why I am here, right? Anyway, last night we changed my gtube. It had been 7 months!! Everything went wonderfully. Yay!! My old gtube balloon was all black but it was an easy change so I didn't mind.
Also, we have a raffle update for you! $1,320!!!!!! YIPPEE! Thank you to everyone who has participated. I want to say a special thank you to Kristin W. for all her encouragement and support, in the midst of the loss of her beautiful son, Cole. Kristin, I love you and am here for you!
Another special thank you to Joann G. for stitching up the beautiful teacup border for Brenda and I. Can't wait to see it in person!
Love,
MJ
Saturday, November 20, 2004 6:33 PM CST
Hello everyone,
I am still very saddened about the loss of Cole. It was the first time I understood when people say "how can the world just keep going???" I have created a memorial website for Cole. If you would like to check it out click here . A lot of people have contributed to the website. Cole was a very loved little boy.
Other than working on Cole's site, I have been started on antibiotics AGAIN. My sinus infection thinks it's found a new home in my nose. I'm hoping to send it packing soon!!!
Not much else going on here. We're praying for Baby Jacob, who is in the hospital and not doing well. Also praying for Ryan, who is at home and struggling. Please keep them in your prayers. Also keep Hayden in your thoughts and prayers. Hayden had surgery Friday and is still intubated. One more person, my little cousin, Sarah, is having hip surgery on Tuesday. She is only 7 and will be in a cast for 6 months. Keep all of them in your thoughts and prayers!
Love to all,
~MJ
PS I couldn't bring myself to delete the entry about Cole. 
Thursday, November 18, 2004 12:43 PM CST
Monday, November 15, 2004 7:13 PM CST
Update:
Tuesday, November 16, 2004 6:09CST
YIPPEE, HOORAY!!!! My class ring came today! I know you can't see it that well...we're working on that. My camera made it blurry. Don't worry, if I have to I'll scan it! LOL Special thanks to my Dad and my Grandmother for buying my ring for me! 
Hi Everyone:
Just a quick update! I first want to say that the Riley Raffle has been a HUGE success so far! 
As of today, we have raised $1,070 for SMA Support!!! Isn't that amazing? 
It has exceeded my expectations by SO much. I am so thankful to everyone has participated and everybody who has been supportive.
I'm doing ok health wise. I'm basically just wheeling along on a plateau ...I just hope that there isn't a sharp cliff at the other end 
. I'm on Tobi for 9 more days and hopefully I will continue on this plateau until after Thanksgiving. 
School wise: I have been working on Physics 
and History 
. I have had a bit of trouble getting what I need from my history teacher 
. He doesn't understand that even if I am a month behind, I can and WILL catch up. Unfortunately, when I got a week behind, he quit sending homework home. 
So I am now further behind because I don't have the test. Anyway, hopefully I will continue my progress with the homework I do have already.
Hope all is well with everyone! Praying for Kody, Jacob, Katelyn, Julia, Ryan, and all my other buddies (sick or healthy)! 
Love
MJ
Wednesday, November 10, 2004 5:28 PM CST
November 11, 2004 6:09PM
Today my horoscope said "Capricorn
A group situation will provide you with a surprise -- a big surprise. It may not be your birthday, but you're sure going to feel like it is. Expect someone to let you know just how special you really are."
and for the 2nd time the second time this year, it was RIGHT! Today my OT, Karen, came over with my printer and computer based ECU (Environmental Control Unit). We got the printer working, YEAH! But the ECU proved to be a problem. :( The company that makes it was not very helpful but we will get to work eventually. Wyatt also got to have some fun too. Karen trains puppies for CCI and brought her current puppy, Denis, with her. Wyatt is wiped out from wrestling and playing with Denis. All in all it was a great day! Prayers to all my sick buddies!
Love,
MJ
Hello Everybody! 
It's been a few days since I've updated
. I am still in the process of catching up with homework. As you can see 
(and hear 
if you have your speakers on) I have been busy, busy, busy working on my website. While Brenda was sick, my friend has been helping me learn new HTML codes. I am really enjoying it. I want to thank Lauren 
for all her help! Please visit her website and say hello!
I have GREAT news about my Riley Raffle! I have raised $580 so far, with more coming everyday! 
Thank you to ALL who have supported my effort, be it by sending money or just by raising awareness about SMA!!!!
I'm getting really 
excited about Thanksgiving, 
only 2 weeks. I don't know who all is coming, 
but I am excited to see my dad's college friend and his wife. We always have a lot of laughs 
when they come.
I'm still thinking about my invitation to Washington DC. I have had several offers (and made promises to go) of other vacations 
. All of these cost money 
. I will let you know when I make my final decision. 
Love to all,
MJ
Wednesday, November 3, 2004 9:50 PM CST
Hi Everyone! 
Just a quick update. I was put on antibiotics on Monday after Dr. Proskin 
read my previous update. She wasn't 
happy that I woke up feeling like I had a brick 
on my chest. My "brick feeling" has gone away but I still have a tight feeling in my lungs 
.
My Riley Raffle is going well! I am still hoping to raise more 
money for SMA Support. If you haven't visited the website yet, please do! 
I'm busy doing homework because the quarter ends next week. I've tried not to get too far behind but I am now. I will try to get caught up before next week. Hope everyone is doing well!!!
,
MJ
Want to e-mail me??? Click Tweety or the butterfly to do so!
*Thanks to Cheryl S for the "e-mail me" graphics!
Monday, November 1, 2004 11:43 AM CST
3:55pm...
I got the coolest letter in the mail today! One of the Assistant Principals at my school sent my information to the National Youth Leadership Forum on Defense, Intelligence, and Diplomacy. The note told me all about it and I am 1 of 350 students NATION WIDE!!! 6 days in Washington DC ! How awesome is that????? $1,200 for it but they are prepared for a students disabilities(transportation, Brenda, housing, etc). Anyway I'm pretty excited (if you couldn't tell)! Now I just have to convince my dad to let me go! 
!!!!!
First off: ATTENTION ALL!!!! I am holding a raffle for SMA Support. Please visit Riley Raffle 2004 for more information! Here is a small picture of Riley and her puppy, Jingles! 
Now for the update. I spent most of my weekend planning everything for the raffle! I was feeling kind of funky 
yesterday but couldn't put my finger
on what was up. I have been using a Vicks nasal spray for my 
sinus pressure. It works really well but Dad 
thought I could get addicted to it. So Brenda went out and got a Vicks vapor inhaler for my nose, just incase. This morning I woke up feeling like someone placed a brick on my chest. Brenda started me on Zicam nasal spray and Airborne, to see if we can avoid putting me on oral antibiotics (I started Tobi on Wednesday). We'll see. Hope everyone had a very happy Halloween! 
,
Wednesday, October 27, 2004 8:02 PM CDT
1:45pm Oct. 28...
Thank you to Joann G for the picture on the the border! Love ya Joquami!!
Hello 
,
We got back from New Jersey around 
pm. Everything went 
. Dr. Bethel was very glad to see me (even if it was to do a tube change). His assistant, Emily, came in to get everything ready and talked with us. We talked more about Tea Tree oil and she even tried some on her pimple. I felt like I was in a high school bathroom discussing 
make-up 
and pimples 
! LOL Anyway, Dr. Bethel came in and we showed him pictures of "his kids" (the kids he has done surgery on). He was really happy 
to see everyone doing SO well! 
He then got ready to switch my tube.
He took the Foley catheter (what I have had for 2 weeks) out. He was pretty sure that the 14fr tube wouldn't go in without first dilating it first but we decided to try anyway! It didn't work so we got ready to dilate my j tract. He started with a 4mm, it went in with no problem. He then went to a 5mm, which went in with a pop 
, literally. Then a 6mm, which didn't go in at all, so he stuck the 5mm in again. The 5mm went in again with a pop ...he then tried to put the j tube in, but it wouldn't go. So he put the 6mm in again and he had to push, but it did go in, with a little wimper 
and a little blood 
from me. We waited for a few seconds, with him twisting 
the dilator a little in the tract, which was rather annoying
. He pulled the dilator out and slipped the tube right in! 
HOORAY!!!!!!!!! 
I'm so glad that it wasn't as bad as I thought it was going to be! 
I've added new pictures of me from today. The 1st picture is of me in my 
Halloween costume, the 2nd is of me in my new coat that my dad made, and the 3rd is of me and my favorite specialist AKA Dr. Bethel (it's not the greatest picture of him because we were talking). Enjoy!!!!!!!!!!!!!!!!!!!
,
Saturday, October 23, 2004 1:48 PM CDT
!
It is I, MJ!! If haven't noticed already, I have done some major updating and improving to the site!
Let me know what you think! I have added music (thanks Lauren for your help) but *I* can't get can't get it to play on AOL. 
(note: As of 10pm everyone, including AOL users, should be able to hear "Chrome")
I would appreciate it if someone who uses the AOL browser could e-mail me or sign my guest book if they can hear the music.
On another note, Brenda got a haircut today (first in 3 months) 
. While she was out, I bought (well I used dads 
) my class ring!!!!! It's awesome. It will be 4 to 6 weeks before it comes but I will be sure to take a picture for you all! Hope everyone is having a great weekend! Don't forget to check out my 
links.
& 
,
MJ
Friday, October 22, 2004 0:17 AM CDT
Hello again:
Well, here it is, early Friday morning. 
They got the heat 
fixed (I think) but it is blowing out cool 
air. It is maintaining the temperature at a balmy 62 to 68 degrees, so we aren't freezing....who knows. 
MJ got her flu shot today!! 
Being up wore her out, 
as usual. She still has the same pesty sinus infection hanging on, but we are still holding off on antibiotics since Tobi starts Wednesday!! YIPPEE!!! We hope Tobi will kill it so we don't have to give her oral antibiotics. MJ still has thrush on the corner of her mouth, so we got Nystantin cream to use and are going to use Gentian Violet every night to try to kill it off for good! Bad thrush,
bad thrush 
!!
We watched the baseball 
games the last two nights. Teaching MJ the rules of baseball and what is going on. Congrats to the Red Sox 
and the Cardinals 
!!! (You didn't hear us cheering for the Red Sox though since we are New Yorkers, LOL!) Not much else happening. Hope everyone has a great weekend!!
Love and hugs,
Brenda
Monday, October 18, 2004 11:55 AM CDT
It's soooo cold here!!! 
We're getting our heating replaced but it feels so cold in the house. (see picture) The guys who are replacing the heat are afraid
of Wyatt so he is tied to my bed. (see photo album) Poor Wyatt!!
Anyway, I don't feel much better
but I will be getting my flu shot on Thursday. The heating will take 3 days to replace so we'll be cold for awhile
. It's 53 degrees outside so it's probably like 50 in here since the guys keep opening the door.
Love from the 
,
MJ, Brenda, & Wyatt
Thursday, October 14, 2004 2:34 PM CDT
Well, the test is over. MJ is done with the PSAT test!
We have had a few busy and stressful days. Tuesday afternoon, we went to do a shower 
and noticed that overnight, MJ's J tube had grown mold! EWWWWW!! 
! So, after dinner we went to change it. UGH, the dang tube wouldn't go in. We tried two different tubes but neither would go in. We ended up getting a foley catheter and putting that in for now, but will have to head 
to Jersey on the 27th to get the correct one re-inserted. Of course, this was the night before the test, so MJ didn't sleep well that night.
Yesterday was the test and it went good. It was hard on MJ, having to sit up and think at the same time. While up, she could feel everything draining downward, so by the time the test was done, she wasn't feeling too hot. 
It is 1pm and she is still sleeping. I think I would be too, but Wyatt woke me up. We are still doing nebs every 4 hours and haven't started an antibiotic yet and hoping we don't have to at this time. Hopefully, we can get through this sinus problem without antibiotics. The good news is, 
that only 2 more weeks until TOBI time!!
Also, MJ will be getting her flu shot next week!
,
Brenda
Saturday, October 9, 2004 9:00 PM CDT
Hey!
MJ here! Just a 
fast update. I'm feeling better tummy wise.
Brenda and Dr. P were right about getting off the antibiotics. My throat bothered me a bit today and yesterday so cross your fingers 
its nothing! I take the PSATs on Wednesday
, and hoping that goes well. I've been doing a lot of writing for school lately and Brenda made a website for them all...if you want to check it out, go to http://journals.aol.com/bracinknee/MJsWritings/ . The picture of above is my new "hip" look!
& 
,
MJ
Wednesday, October 6, 2004 8:50 PM CDT
Hi all:
MJ is partially on the upswing. 
The sinus infection
is going away and her lungs are clear. The
antibiotics, however, are killing her. 
UGH! She
gets them twice a day and all day and night her
intestines are grumbling and making loud noises and
spasming. She is not enjoying it. Talked to the
doctor yesterday. She told MJ to stop taking the
antibiotics if she wanted too, but she is afraid to
at this time, so MJ is using PeptoBismal for it. (note: I, MJ have now decided to discontinue the antibiotics)
For her size, she is supposed to take 30 cc as
needed. Could only get 20 in last night in an
hour.....can't give too much of a med at once, or it
causes other problems. Hopefully, after this
weekend, when she is done with the antibiotics,
things will be on the upswing. 
,
Brenda
Saturday, October 2, 2004 0:51 AM CDT
Before I start this off, I have one word to say....UGH!!
You know MJ, she never does anything easy!! Can you
guess yet where I'm going!?!?!? The last couple
days, MJ has complained of really bad headaches but
not much else....her lungs are clear but yesterday,
it became apparent that MJ had a sinus infection.
Yes, MJ developed a sinus infection while on Avelox
(pretty strong antibiotic). So, as of tonite, she
was started on Augmentin for 10 more days (after 14
days of Avelox). We had been doing a lot of
drainage and all the stuff from her lungs went to
her head...yes, it is all in her head (LOL).
Tuesday, September 28, 2004 8:04 AM CDT
What a weekend!!! MJ was feeling pretty good Saturday morning, so she decided to work at being able to go back to school Monday, so she sat up all day Saturday. Saturday night, she felt it. She was really congested again and her lungs were filling back up. :o( I think she finally "fell asleep" around 3am.
We restarted the Carnitor since she has been so tired and just not herself. You can tell MJ isn't feeling well at all when she doesn't want to go on the computer. So with the carnitor and increasing her albuterol liquid dose, along with nebulizer treatments every 3 to 4 hours, she is finally starting to feel better.
Wednesday is MJ's last day on Tobi which has us all worried. She has never gotten sick while on Tobi and she will have 28 days without it. UGH! Saturday is the last day on Avelox, so we hope this bug is gone by then and we can have a "peaceful" 28 days until Tobi Time again.
We just got a call from the school regarding MJ's aide and her notes. She abbreviates or doesn't write notes down and they finally sent someone into class to take notes and compare them to the aides and they called to say that the aide's notes are "DEPLORABLE". Duh, we dealt with her last year too!! She abbreviates but doesn't tell us what the abbreviations stand for. For example, the history teacher was talking about the Intolerable Acts yesterday, MJ's aide abbreviated it J/\ (J and upside down V). Try figuring that out! Hopefully, they will finally get MJ and aide who knows how to take notes, now.
Anyway, keep the prayers coming as MJ will need them come Thursday. Thanks.
Tuesday, September 21, 2004 11:05 PM CDT
Hot off the press: New MJ update for y'all!
MJ is holding her own, a "tad" better. Her left lung is opened up and her right one still has some stuff in it, but not as much. Still running a temp around 101, but bringing stuff up finally. She will probably be home all week for sure. Today she slept till 12:30pm, so she is getting plenty of rest. Tonite cheered her up as we finally got DSL!!!!!!!!!!! She is glad to be done with dial up and slow connections!!! (Of course, getting hooked up to DSL didn't go smoothly as the company forgot to switch it on, on their end, so after 2 phone calls, we are on and surfing).
MJ said thanks for all the prayers and good wishes...she felt them coming and helping!!! She sends hugs to everyone!!!
Monday, September 20, 2004
Hi all:
Well, things are starting to head "south". We upped the nebulizer treatments to every 3 hours and re-started Pulmozyme. This is even a Tobi month, so MJ is on albuterol, pulmicort, Tobi and now Pulmozyme. UGH! Today we will start on an oral antibiotic as this keeps heading right for the lungs. Sats are lower than normal (95 to 97) and dips to 87. MJ was very upset that she only lasted 9 days (one more than last year) before getting sick. Let's hope this goes away quickly.
Wednesday, September 8, 2004 6:42 PM CDT
Busy busy busy!!! School and homework and friends have been taking up all my time. I had my first wheelchair clinc apt today! It went well. I may be getting an Invacare mid-wheel-drive chair but I get to test drive 1 first. It sounds like I'm buying a new car! lOL If I were, it would be like buying a Corvette! Well got to go! Check out my new pictures (the link is above)!!! MJ
Monday, September 6, 2004 9:38 PM CDT
WEEEEE'RRRRRRREEE BAAAAAAAACK!
We got home around 5pm from camping. It was sooooooo awesome! Quite a place. We had our own cabin (8 beds). I'm very tan and wind burnt. There is so much I should be telling you but I can't think straight. I went to the beach twice, flew a kite, saw a pet cemetery and ate S'mores. Today we went to Mohegan Sun (very famous casino) because Shaun was on the telethon. Mohegan Sun is great too!! I'll write more about the whole trip tomorrow but for now here are a few pics!!
Thursday, September 2, 2004 4:05 PM CDT
Hi all,
I'm home from school. The day went pretty well! My first class is US history. The teacher seemed shocked to see me come in. There also were not enough desks, so Brenda didn't have a desk (which means, if I didn't come with my own, I wouldn't have had a desk). But I didn't really get to know my history teacher because we had an assembly during that period. When I got down to the auditorium, the bar (for the door, to keep them locked when the auditorium is not in use) was still in. Ordinarily I don't go in the auditorium but when I do we have to have the bar removed. My guidance counselor hurriedly went to find a custodian to remove the bar. Meanwhile the assembly had already started. My assistant principal (we have three in our school) came and asked what was going on. Brenda and I told him that I couldn't come in because of the bar. My assistant principal quickly got out his Swiss Army knife, and started removing the bar. LOL he kept apologizing and I said it was all right. He told me it wasn't all right and said it was unacceptable. After that I went to my forensic science class. It seems like it will be a lot of fun. The teacher, Mr. Smith, was my chemistry teacher last year so already knows the drill. I fourth period Class is lunch. It's a very early lunch but I guess that's OK. After lunch I have precalculus. My precalculus teacher, Miss Russell, was my student teacher in eighth grade. She is lots of fun. After precalculus I have physics. My physics teacher is pretty cool too. Today I had a double period of physics (every other day I have a double period. For labs). I think I'll have a lot of fun in physics. After physics is English. My English teacher is really cool. He says were going to use the computer a lot. yay! (We all know how much I love to use the computer) he gave us our class requirements on a PowerPoint presentation. After English I have choir. I haven't really been in choir since eighth grade. But (there's always a but isn't there?) This is the class I got some bad news in. They have decided to move the choir class down stairs. To the basement, the only place I can't go. This is also where the lunchroom is. So for now I'll be doing independent study for choir. This means I won't go to class but will receive the music and tapes from class to practice with at home. I'll also attend sectionals. The other bad news we got was that my superintendent has decided not to let my aid bring homework home to me when I'm sick. I'm betting that Dad will take care of that. Well that's all for now. I head back-to-school tomorrow. Ttyl
MJ
Wednesday, September 1, 2004 12:37 AM CDT
Hey!
I said I'd update before school started and I am! School starts tomorrow (not today, Dad! L. O. L.). I'm not very excited but I am excited that the first week I only go two days, the second week four days, and the third week three days. Not a bad way to start the year, LOL! On Friday afternoon, I leave to go camping with Aunt Me-Me, Shaun, and Lynn. We are going to camp Harkness. I'm very excited! Not much else exciting going on here. I did find out I have classes with a lot of my friends. On September 8 I have a wheelchair clinic appointment. Most of you don't known my chair was pretty bad off on vacation. I had lateral tilt on my chair and it caused many problems because the frame cracked in three places.
Wednesday, September 1, 2004 12:37 AM CDT
Hey!
I said I'd update before school started and I am! School starts tomorrow (not today, Dad! L. O. L.). I'm not very excited but I am excited that the first week I only go two days, the second week four days, and the third week three days. Not a bad way to start the year, LOL! On Friday afternoon, I leave to go camping with Aunt Me-Me, Shaun, and Lynn. We are going to camp Harkness. I'm very excited! Not much else exciting going on here. I did find out I have classes with a lot of my friends. On September 8 I have a wheelchair clinic appointment. Most of you don't known my chair was pretty bad off on vacation. I had lateral tilt on my chair and it caused many problems because the frame cracked in three places.
Monday, August 30, 2004 4:20 PM CDT
Hello everyone!
I am a home from the lake house. I had a wonderful time with all my family! On August 21 all of my family got together and had a family reunion. I got to meet some of my family for the first time. I had a wonderful time with my cousin Sarah. Her mom, Ruth, is going to help us with our organization, B4SMA. I'm sorry I haven't updated my web site about my prior the vacation. Everything has been hectic around here. Plus, I didn't have Internet access at the lake house. Wyatt came to the lake house for five days. He had a wonderful time! School starts on September 2. I have a lot of classes, but I am most excited about forensic science. The picture above, is me with my cousin Sarah. Hope all is well with everyone! I will try and update before school starts. Oh, I almost forgot, I'm going on vacation again for Labor Day. I'm going camping with friends of mine from Connecticut. Have a great Labor Day everyone and if I don't post before then I will definitely post after! MJ
PS please pray for my little buddy Jimmy. He just had surgery for trach and is going to this step down unit.
Friday, August 13, 2004 10:04 PM CDT
Hi all,
Quite a long time since the last post! Sorry!! I had a GREAT summer. I won't go into detail now because I'm too tired! The following note was written August 6th and I thought you might enjoy it!
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Hi all:
Wasn't going to sign on tonite but just had to share our story!!!!!!!
Tonite, MJ and I went to the county fair to see Joe Nichols in concert....we were debating on going, but since it was only 10 a person, we decided to go!!! Boy, are we ever glad!!
We got there and went in and had track seating but it was full, so I asked the security guard where would be good and a lady took us right up to the front row on the right side of the stage!!! WOO HOO!!!!!
Then when the concert started MJ was getting into it, we were clapping her hands and she was singing along and Joe started singing "The Impossible" and he saw MJ when he was singing about the boy who broke his back, and kind of ! ! got choked up but smiled at MJ....then he started singing one of MJ's favorite songs "If Nobody Believed in You" and in the sky, both MJ and I saw these two glowing balls/globes of light that bounced around in the sky for a few seconds then just disappeared...there were angels among us for sure....ok, then Joe sang his new song about his father dying and those lights were in the sky again and then Joe smiled at MJ. He sang MJ's favorite song, "Brokenheartsville" and MJ was singing along and getting into it and Joe looked at her and cracked up laughing...probably thinking what does that young girl know about this!!! LOL!!!
But the best thing was the end of the encore!! Joe was throwing guitar picks out and came over to the corner, smiled at MJ, winked at her, pointed at her and threw the pick at her and it came whizzing through the air, hit her lateral and landed in her lap!!!!!!!!!! MJ was so excited and just amazed!! What a perfect ending!! ! !!!!!!! How cool is that!!!!! We just had to share our angel story and our how cool story with everyone!!!!!
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What a WONDERFUL night!!!! Will try to update when we return home (off again tomorrow to the lake)! The picture above is of me and my friend Aaron.
MJ
Sunday, July 4, 2004 11:10 AM CDT
Hey Everyone,
Happy 4th of July!! I got home yesterday around 1pm from the Lake House. It was fun! Brenda, my grandmother, and I made a whole bunch of quilts for B4SMA. I really hope the kids who receive them enjoy them. On Friday, we went to get my cousin, Sammy, from vacation bible school. She was volunteering there with her aunt. I think next year I might want to go with her. It looked like a lot of fun. Friday night my aunt and uncle came up with their 2 dogs. It was really great to see them because I haven't seen them since January, when they got married.
Tomorrow Brenda and I strat our 5 day drive to Minnesota and THE MALL OF AMERICA! YEAH!!!!!!!!!!!! I'm so excited to meet Brenda's aunt and see her mom again. After the mall, I'm heading to Iowa City to tour the University. I also get to meet 2 of Brenda's college roommates. It should be fun! I won't have much access to the computer so I'm not sure how often I'll be able to update. Well, I guess that's all for now. Hope everyone is having a nice 4th of July!! TTYL, MJ
Thursday, June 24, 2004 10:10 AM CDT
Hi everyone
Just a quick update before we are off!!!!!!!!
This afternoon, we are off to New Jersey to the lake house (or known as the shack in the woods)! We will be there from today until the 3rd of July. We will have to come home during the week to pick up more meds, since they wouldn't let us order meds 2 days earlier than the 28 day span. The lake house is only 45 min from here, so it isn't bad at all! We are excited to get away and relax. We don't take the computer as the lake house's phone line won't support signing on - it still has rotary dial and it isn't possible, besides it isn't the purpose of the lake house to have modern conveniences there (the shower is outside, no AC, we did get a microwave and basic cable tv so we can get a reception, but that is about it). We plan on reading books, playing cards, and sewing quilts. Gonna test out my new sewing machine and have Grandmother help make quilts.
MJ is excited that school is out and she is now a junior!!!!! She did really well on her tests and the teachers were pleased. Just a recap: last year she was in school 28 days (most being for half day) and this year she made it 8 days in school. World History, which is a 2 year course, she got an 89 on the state regents test. Spanish III (the tests covers 2 years), she got an 88. And Math B, which is high math and covers 2 years and deals with Trig, geometry, high algebra and pre calc, she got a 93!!!!! She was really worried about the test since so many people have to retake it several times before passing it. The first part of the test are problems with multiple choice questions and she scored higher than the teacher.....the teacher made a mistake on the key so MJ's test became the key!!! LOL!!! We don't know about Chemistry yet but hope to know soon! So, we have been busy packing and such. If you need us, email Karen, as we will be calling her daily to ask what is up or call us if you need something specific!
After we get home on the 3rd of July, we will be heading out July 5th for Minnesota, Iowa, and Ohio, where we will be until august 9th (but will be taking the computer with us). So, until then, adios and have a great summer!!!!
Brenda
Saturday, June 19, 2004 0:41 AM CDT
Well, what a week it has been!!
We had a pretty good weekend, last weekend. Got quality studying done for World History.
Tuesday sometime, the Air conditioner quit working and can't be fixed, so it has to be totally replaced, GRRRR! So, MJ and I have be sweating all week. Sleeping with no covers at night and two oscillating fans on high! Been pretty miserable (especially when trying to study)!
Thursday, MJ took her World History Regents test. It covered two years of history classes. There were 50 Multiple choice questions, 16 short answer questions and 2 essays for it! Started at 12:30 and was finished at 3:15. MJ got to take her test in the guidance counselors office since it is air conditioned! That helped cool us off! Got done with the test and headed outside and boy was it raining. There was a waterfall on the ramp, so there was no way we could get down it so we waited. One test done, 3 to go. MJ has spanish regents tuesday morning and her math test tuesday afternoon and chemistry regents Wednesday morning.
Today, MJ had a doctors appt. Her doctor was quite pleased that MJ's lungs are sounding the best they have sounded since she met her (18 months ago)! That is pretty exciting!
The other good news is that as of today, MJ (for now) is off Reglan, Simethicone, Carnitor, and Pulmozyme. When sick she will start back on Pulmozyme and Carnitor, but only then!!! She is also down to one dose a day of Zantac and Nexium and has no oral meds in the morning, only evening ones. She is staying on albuterol and pulmicort nebs twice a day and Tobi every 28 days regardless of her health, just to try to help prevent future problems.
And on another front, Good news everyone!!!!!!!!!!!
We just heard today, that MJ's book/doll set will be coming out tomorrow. In case you don't remember or weren't here, in January, MJ was asked by a doll artist to write a children's story about one of her dolls (and the characters dog). So, MJ wrote a story and the artist loved it. The book will be apart of a set of the doll, named Riley, the dog and MJ's book! When asked what she wanted for payment, MJ said, all she wanted was a doll set to auction off for SMA!!!!!!!! Once we get it, it will be put up for auction and should bring in a fair amount as it is a numbered set of 350 and will be signed by Helen Kish, the artist!! MJ is pretty excited, she gets number 1 and she will auction of #2!!! We could have it as early as Thursday!! Woo Hoo!!
To see a picture go to http://www.denverdoll.com/helen_kish.htm and go down until you see Perfect Puppy Gift Set: Riley and Jingles
Saturday, June 12, 2004 1:46 PM CDT
Hi all,
Had a great day today! Brenda took me up to Wal-Mart and Joann Fabric. We also went to Applebee's for dinner. According to Brenda, I was being checked out by every waiter in Applebee's. But as usual, I was completely oblivious. LOL I think I need to work on that! We got lots of fabric to make baby quilts. I got a new watch because my old 1 keeps alarming at 3am! Very annoying. Today I also found out that I'm getting my own cell phone. I'm so excited!
Next week starts 2 weeks of testing. Bleh!! I have a bunch of state exams which you have to pass in order to graduate. I'm pretty sure I'll do alright. After testing starts my whirlwind summer vacation. I'm really excited about going to the Mall of America and meeting Brenda's aunt! Well, thats all for now. Hope you all have a great weekend!
MJ
Tuesday, June 1, 2004 0:43 AM CDT
Well, we survived our camping trip and LOVED it. Lots of surprises in store for us!!!!!!!! We picked up Aunt Me-Me and met up with Lynne and Shaun and went out for dinner at McDonalds before heading to camp. Boy, was traffic horrendous!!!!!!!!! We arrived in time for the opening meeting. Then everyone went swimming. MJ wasn't planning on going since they had told us on the phone that the way they had to get in the pool wouldn't work for MJ. Well, we saw a Hoyer Lift and went and talked to them. They said they could get MJ in, so we decided to do it Saturday. Our room overlooked the lake and was quite beautiful. Saturday was a full, full day. Breakfast, followed by fishing and games, lunch, long walk exploring the grounds, tye-dye shirts, SWIMMING!!!!!!!!!!, dinner, movie and finally bed. Yes, you read that right, MJ went swimming. First time in 3 years!!!!!!!!!!!!!!! WOO HOOOOOOOO!!!!!!!! Boy, did she feel it Saturday night. Besides rolling every 30 minutes all night, her vent alarmed all night too, so I was very tired. Sunday morning came too early and it was time to pack up. Breakfast then swimming (MJ said NO, too sore from Saturday) and packing the van. Lunch and then saying goodbye. We headed to Zoe's house to let MJ test their house out...it was made accessible for their son, Ronald and wanted MJ to see if her chair would fit. It did and what a beautiful house. It is MJ's dream house!!!!!! At 3:15 we headed for home. Had to stop because MJ's feeding pump was alarming and then stopped to drop Aunt Me-Me off and were home by 6pm. Not bad!!!!! We are definately going next year!!!!! It was a beautiful campground. We are also going to go camping again at a different place Labor Day weekend. MJ and I are loving it!
Today, MJ slept in till noon. We went out to see Shrek 2. What a great movie. Really cute and a must see!!!!! After the movie we went to Boston Market. That was our weekend. We had a great time and pray and hope that MJ doesn't get a sinus infection as there was tons of pollen around! Hugs to all!!!!
Tuesday, June 1, 2004 0:43 AM CDT
Well, we survived our camping trip and LOVED it. Lots of surprises in store for us!!!!!!!! We picked up Aunt Me-Me and met up with Lynne and Shaun and went out for dinner at McDonalds before heading to camp. Boy, was traffic horrendous!!!!!!!!! We arrived in time for the opening meeting. Then everyone went swimming. MJ wasn't planning on going since they had told us on the phone that the way they had to get in the pool wouldn't work for MJ. Well, we saw a Hoyer Lift and went and talked to them. They said they could get MJ in, so we decided to do it Saturday. Our room overlooked the lake and was quite beautiful. Saturday was a full, full day. Breakfast, followed by fishing and games, lunch, long walk exploring the grounds, tye-dye shirts, SWIMMING!!!!!!!!!!, dinner, movie and finally bed. Yes, you read that right, MJ went swimming. First time in 3 years!!!!!!!!!!!!!!! WOO HOOOOOOOO!!!!!!!! Boy, did she feel it Saturday night. Besides rolling every 30 minutes all night, her vent alarmed all night too, so I was very tired. Sunday morning came too early and it was time to pack up. Breakfast then swimming (MJ said NO, too sore from Saturday) and packing the van. Lunch and then saying goodbye. We headed to Zoe's house to let MJ test their house out...it was made accessible for their son, Ronald and wanted MJ to see if her chair would fit. It did and what a beautiful house. It is MJ's dream house!!!!!! At 3:15 we headed for home. Had to stop because MJ's feeding pump was alarming and then stopped to drop Aunt Me-Me off and were home by 6pm. Not bad!!!!! We are definately going next year!!!!! It was a beautiful campground. We are also going to go camping again at a different place Labor Day weekend. MJ and I are loving it!
Today, MJ slept in till noon. We went out to see Shrek 2. What a great movie. Really cute and a must see!!!!! After the movie we went to Boston Market. That was our weekend. We had a great time and pray and hope that MJ doesn't get a sinus infection as there was tons of pollen around! Hugs to all!!!!
Friday, May 28, 2004 0:10 AM CDT
Hi all:
Thought I would update before we head out for the weekend. MJ's new splints are great!!!!!! She loves them. She got two splints: a resting splint and a computer splint for her right hand. She is sleeping with the resting splint now and can tolerate about 90 min, which is good as she hasn't worn hand splints for about 6 years.
Wednesday, MJ had her spanish oral test. She got an 18 out of 24. Not bad considering that she has been in school about 35 days in the past two years!!!!!!!!!! Not bad at all!!!!!!! MJ is sure glad that it is over with. We have been hitting the homework again to finish it up!!!!!! Still behind in math class but catching up in the others.
Tomorrow, Friday, MJ and I are off for the weekend, to go camping. We can't wait. We know that we will have a great time!!!!! We will be home Sunday late afternoon. Can you believe it is Memorial Day weekend already!!!!! Where does the time go!!!!!! Well, that is all for today, hugs to you all!!!!!!
Monday, May 24, 2004 11:40 AM CDT
Well, another week gone by, things have been busy here. Tuesday afternoon, MJ wasn't feeling very well, and by Tuesday night, it was apparent MJ had yet another sinus infection. We started Zithromax early Wednesday morning, but she was not able to attend her Spanish Honor Society induction on Thursday. She was a tad upset, but knew if she went, she would only feel more miserable.
Tomorrow, she has her OT appointment to get hand splints made and on Wednesday morning at 8:00am, she has part 1 of her Spanish State Regents Test. She is very nervous, so prayers would be helpful!
Friday, we are going camping at Camp Hemelocks with friends. More exciting weekend plans. This past weekend we went out to celebrate my birthday at the mall. We ate at The Macaroni Grill for lunch and The Cheesecake Factory for dessert. DELICIOUS!!!!!!!!
Well, time to go finish MJ's breathing treatment. TTYL!!!!
Tuesday, May 18, 2004 11:23 AM CDT
Here it is again, 2 weeks have gone by and no update!!!!! We are having some computer issues, where the computer just shuts down at random times but other than computer issues, nothing much is going on.
MJ is doing pretty good. Thought she was getting a sinus infection or starting a cold, but the Tobi she is on, seems to have kicked it right from the beginning. We really play around with her meds to maximize benefits from everything. When MJ gets stuffy, we add more Sudafed to her regimen and that also helps. We also just got MJ off Reglan. After 18 months, she is off!!!!!!! She was starting to have some side effects that couldn't be ignored, so she is off!!!! That is good news!! One less drug!
Last week, MJ had a doctor's appt at Blythedale Hospital to see Dr. Burkow. It went well, but he wasn't too bright. We only needed to see him to get a referral for MJ to get hand splints. Ugh!!!
We are hard at work to get MJ caught up in school. Only a month left and then time for finals. Where does the time fly??? Thursday, I am taking MJ into to school for her induction into the Spanish Honor Society. It will be her first time in school since September 17th and we hope nothing bad comes of it.
Now, this past weekend was exciting!!!!!! We had visitors Thursday night and Friday morning we left for Boston to go to a FSMA fundraiser walk. We visited with lots of old friends. The weather was extremely hot Saturday and cool and rainy Sunday. MJ didn't get sunburnt but did get some mosquito bites!!!! We sure didn't want to come home after that...what a let down after spending the weekend with others who totally understand what you are going through and are talking about. LOL!!!
Well that is all for now. Time to get moving today and get this posted. Hugs to all!!!!!!!
Thursday, April 29, 2004 12:00 AM CDT
Hi all:
I went to post an update yesterday, but the computer froze and got booted off and lost it. :o(
Yesterday went really well, it was a long, long day, but went great.
We left at noon and hit no traffic and arrived at 1:15. Headed to PICU and delivered about 50 videotapes for the unit. MJ got to see Helen (social worker) and Freddie (one of her fav. nurses) and talked for awhile. She enjoyed that.
At 1:45 headed for Bethel's office. Went back and waited for him. Bethel drew us pictures and discussed risks of changing a J tube vs G tube. I told him what I had found out from a friend who changes her own J tube at home and how she does it. He said is sounded good to him. Oh, first of all, we presented a photo album to Bethel of some of the kids he has done surgery on in the past. He couldn't believe that it was for him. He couldn't believe how big and great the kids looked. We also gave Emily and Bethel a SMA Across America Shirt. They thought they were way cool!!!
On a side note, Dr. Bethel asked if I would get a list of email addresses of all of you whose kids had surgery with him. He would love to email you. If you would like to talk to him and fill him in on how your kids are doing, please let me know. I will be giving him a list next week! Thanks.
OK, the tube change. We got things set up and pulled the old tube out (way gross looking). The balloon had ruptured and became hard, so it did hurt a little as I pulled it out. Bethel started to insert it and then asked MJ if he could pull it out and let me try it. MJ said NO WAY!! Once was enough. So, I finished pushing it in and inflated the balloon. It went really well. YIPPEE!!!!! He gave us full approval of doing it at home from now on.
We talked about granulation tissue and how MJ had lots awhile back. He was very impressed with how well it healed up and was shocked that we don't use silver nitrate. He personally doesn't like to use it and was glad to hear about tea tree oil. He and Emily both wrote it down and will tell the patients about it. COOL!!
We also talked about quality of life (his suggestion) based on pics of the kids. We told him of docs who say that SMA I kids have no "quality of life". He grabbed the photo album and looked again and said that was just wrong. He couldn't believe that docs were still saying those things in this day and age. He wasn't ever really sure if he what he did made a difference but the pictures showed him for sure that NIV and gtube was the way to go. So, way to go, we made a total believer out of him. He couldn't believe the type 2 kids that he did and how great they looked too!!!
OK, went to IHOP for lunch/early dinner. Headed home, but got caught on the bridge due to an accident. Finally arrived home at 7:15. LONG LONG DAY!!!!!! MJ said her tube area hurt a bit but nothing major! YIPPEE!!!!!!! So, all in all a great day!!!!!!!!
Saturday, April 24, 2004 10:14 AM CDT
What a beautiful day it is here today. Sun is shining and great weather. MJ is doing pretty good. She had a doctors appointment on Wednesday. She has a rash all over her back. Saw the doctor but still aren't sure what it is. We tried Aveeno cream, but that didn't do anything. She also has a rash in both armpits....aren't sure but it looks like a yeast and bacterial infection. She is getting Bactroban and Lotramin mixed and it seems to be doing ok. We are trying that on her back right now to see if it makes a difference.
Tomorrow is the Connecticut FSMA SMArt Walk. We are excited to see our friends from last year and meet any other families. MJ has to get up early since the walk starts at 10am. She will be exhausted Monday.
Third quarter ended before break and fourth quarter has started. MJ got 2 grades so far...96 in spanish and 91 in Math B. She has caught up in Psychology and Chemistry so we are awaiting those grades. English and History left to catch up in plus stay caught up to date with everything else. She is doing good. Finals testing starts June 10th and Regents testing starts June 15th. MJ has 4 Regents state tests this year: World History, Math B, Chemistry, and Spanish. The year is almost over. MJ has been in school only 8 or 9 days this year.
And the best news!!!!!!!! MJ just found out that she was named to the Spanish Honor Society based on Spanish grades the past 3 years of Spanish and overall grades. She was very shocked and honored!!!!!! WOO HOOOO!!!!!!!!!!
That is all for now. MJ started on Tobi yesterday and we are so glad she made it through the month off with one pneumonia and one sinus infection! TTYL.
Hugs and prayers are still going out for Skyler and Kaydence, who are still in the hospital and for Connor who is having medical issues now. We love you all and hope you get better soon!!!!!!
Tuesday, April 20, 2004 9:54 AM CDT
Well, getting glasses went great!!!! MJ loves them. Of course, we went out Thursday and Friday MJ woke up with a sinus infection!!!! Started her on antibiotics right away and that seemed to help.
MJ got her quilt Saturday and had a great visit with Linda and Jeanette. MJ sleeps with her quilt every night. We still keep admiring it and all the hard work that went into it.
MJ is feeling a little better today. She has a strange rash on her back....trying to figure out what it is and could be causing it. Time to head to the doctor again.
We are finalizing hotel and travel plans for the summer. Hopefully, we will get hotel reservations made this week!!! Yeah!!!!! MJ is very excited for the summer. We will be working hard and trying to get her healthy for our travels.
Not much else is going on. Prayers going out to Skyler, Connor, Kaydence and Taleah....hope they all get home soon!!!!!
Friday, April 16, 2004 0:34 AM CDT
Hi all:
Yes, I am back from Iowa. I had a great time. I quilted almost the whole week and had fun. I brought back a suitcase full of quilts.
MJ is doing good. Over the pneumonia while I was gone, but she keeps trying to get a sinus infection....we just up the meds and chase it away, but it keeps trying to return.
Today we went and got MJ's glasses finally!!!!!! They come with clip on shades too!! See photo album for photo. She finds them very comfortable and is glad to be able to see the fine print while watching television. LOL!
Saturday, MJ's quilt from Cole's Quilts is being hand delivered. She can't wait!!!!! We will post pics this weekend to share!!
Prayers going out for Skyler, hoping she gets home soon!!!!!!
Tuesday, April 6, 2004 12:53 AM CDT
Hi all,
Brenda is away in IA with her family. My grandma June came to stay with us from Ohio. We're having lots of fun! We mostly watch TV & movies and laugh a lot too. We watched Mona Lisa Smile on Sunday and will probably watch Something's Gotta Give today. We also watch every soap opera on CBS from 12:30 til 3:00. She's a great grandma and I love having her here.
Other than watching way too much TV, I mostly read e-mails and chat with friends. We've also spent a lot of today cleaning (bleh)! We're going through my beanie babie collection. I haven't been keeping much because I'm out of that stange. I'm going to donate most of them (except the dirty ones) to my little buddies. Hopefully they be well liked! Please keep my little buddies Skyler and Teleah in your prayers! They're both in the hospital so hopefully they can come home soon!! Thanks for stopping by and don't forget to sign my guest book!! ~MJ
Friday, April 2, 2004 0:04 AM CST
First of all, the above picture is of MJ and the new glasses she ordered. She ordered them through www.apairofshades.com It is a friend of ours, whose son also has SMA. Her glasses will be in soon.
Sunday, after a long Saturday, MJ said something wasn't quite right, and by yesterday morning, it was apparrent that MJ was fighting pneumonia again! :o(
MJ had a rough day. This morning woke at 4am wheezing, rattling, and really congested. She did a treatment at 4am, 7am, 10am and 1pm. Plus throughout the day. Coughing up yellow and brownish stuff with a tad of green thrown in. YUCK! Tonite, she kept desatting...a few times down to 65. I was in the shower and they would get her back up but she would go right back down...so we did an hour long vestie session with nebs and right now is at 98. MJ was off vent for a bit while I was giving her her drugs and felt her lung pop open. Her sats went from 93 to 97 and pulse went from 135 to 105. Ugh, how scary...is it a good thing I hadn't listened to her yet, so I didn't freak out?!?!? Her lower right lobe sounds less as her upper left. Well, that was our day!!!!! Now I am really nervous about going home on vacation!!!! Prayers are still going out to Taleah, Skyler, Kaydence, Skylar, Ryan, and Brett. (who did I miss?)
Friday, March 26, 2004 11:18 PM CST
Sorry, for the long time between updates. I seem to run out of hours in the day.
I promised the doctor that I wouldn't announce anything since it seems to jinx us, but here it is
MJ is doing much better!
MJ is done with antibiotics and Tobi (sad) but still has thrush and a stye in her left eye. Not sure where that is from, so she is on antibiotic ointment for that.
Tomorrow (or maybe later today) we are going to go to Warwick and MJ is going to finally pick out her glasses!!!!!! We have had the prescription since September, but she is finally feeling better, that we can go order them.
MJ's GJ arrives Wednesday! MJ is very excited. I fly home next Saturday for a week! I'm pretty excited too.
Please keep our SMA buddies in your prayers. Skyler, Ryan, Kaydence, and Aschdon are in the hospital. Our thoughts and prayers are with them all!
Tuesday, March 16, 2004 10:34 AM CST
Ok, I spoke to soon.
Major bummer here guys:
MJ is sick again. This time with a sinus infection. She was feeling so dang good and now this. Tim has been fighting a cold, and it looks like MJ has it now. GRRRRRRRRRRRR!! Not happy campers here. MJ started on Omnicef last night. She also has major thrush (I was bad and forgot to rinse her mouth after pulmicort) :o( She is back on Nystantin (hasn't taken in 6 months). Well, that is the sad news from here. TTYL
Please keep the Slack family in your prayers, their daughter passed away last night. She had SMA also. She was 11 months old. Thanks.
Sunday, March 14, 2004 0:04 AM CST
Hi all!
MJ is doing..... "says very very quietly while knocking on wood"......well!!!!! Shh, don't get too excited, don't want to jinx her! LOL
Two weeks ago, she started on Tobi for her pneumonia without oral antibiotics along with Rhinocort AQ nasal spray. Since then her pneumonia has cleared!!!!! The Rhinocort is working and she had cut back on Sudafed to half a dose. She is cutting back on Tylenol or Advil at night and Zofran too! We also started her on a new acidophilus and it seems to be working better. Last week, we started Carnitor and it is working! We only could do one dose a day instead of three as she gets stomach pains from it more than once a day. We do it once a day and it gives her lots more energy! Geez, who knew!!!!
Today we went for haircuts....this was the first day out for MJ in 6 weeks! YIKES!!!!! I have been out 3 times during then but this was MJ's first time out since the beginning of February (and that was to the doc)!!!!!
Hugs and prayers to all our buddies!!!!!
Friday, March 5, 2004 11:56 PM CST
Geez, another week has gone by!!! Where does the time go! Yesterday was a bad, bad day!!!!!! No, don't worry, we are all fine....we were without phone service and internet service!!!! We were having a serious case of withdrawls!!!! To MJ, the computer is her link to the outside world. Thank God they were able to come today and fix it!!!
MJ is doing better (knocking on wood and speaking quietly). We talked to the pulmonologist last week and he agreed with all that we had been doing. For something different, when MJ got sick, we just started her on Tobi and no oral antibiotics and it worked!!!!!!!! whoopee!!! Dr. Josh started MJ on Rhinocort AQ to see if we can get MJ off of Sudafed. So far so good. She is down to 1 tsp instead of 2 and no sinus headaches or infections yet!!!!!! YIPPEE!!!!!!
Nothing much else is happening. Doing homework and waiting for warmer and healthier weather! TTYL. Thanks for visiting and signing the guest book. MJ learned how to do backgrounds and is excited to be able to change them herself!
Friday, March 5, 2004 11:56 PM CST
Geez, another week has gone by!!! Where does the time go! Yesterday was a bad, bad day!!!!!! No, don't worry, we are all fine....we were without phone service and internet service!!!! We were having a serious case of withdrawls!!!! To MJ, the computer is her link to the outside world. Thank God they were able to come today and fix it!!!
MJ is doing better (knocking on wood and speaking quietly). We talked to the pulmonologist last week and he agreed with all that we had been doing. For something different, when MJ got sick, we just started her on Tobi and no oral antibiotics and it worked!!!!!!!! whoopee!!! Dr. Josh started MJ on Rhinocort AQ to see if we can get MJ off of Sudafed. So far so good. She is down to 1 tsp instead of 2 and no sinus headaches or infections yet!!!!!! YIPPEE!!!!!!
Nothing much else is happening. Doing homework and waiting for warmer and healthier weather! TTYL. Thanks for visiting and signing the guest book. MJ learned how to do backgrounds and is excited to be able to change them herself!
Friday, March 5, 2004 11:56 PM CST
Geez, another week has gone by!!! Where does the time go! Yesterday was a bad, bad day!!!!!! No, don't worry, we are all fine....we were without phone service and internet service!!!! We were having a serious case of withdrawls!!!! To MJ, the computer is her link to the outside world. Thank God they were able to come today and fix it!!!
MJ is doing better (knocking on wood and speaking quietly). We talked to the pulmonologist last week and he agreed with all that we had been doing. For something different, when MJ got sick, we just started her on Tobi and no oral antibiotics and it worked!!!!!!!! whoopee!!! Dr. Josh started MJ on Rhinocort AQ to see if we can get MJ off of Sudafed. So far so good. She is down to 1 tsp instead of 2 and no sinus headaches or infections yet!!!!!! YIPPEE!!!!!!
Nothing much else is happening. Doing homework and waiting for warmer and healthier weather! TTYL. Thanks for visiting and signing the guest book. MJ learned how to do backgrounds and is excited to be able to change them herself!
Thursday, February 26, 2004 8:32 AM CST
Another long while without an update:
Sorry!!!!
Last week, MJ was extremely tired. Several days, she could only handle an hour on the computer a day and spent most of the day resting or sleeping. Needless to say, we didn't do any homework, so now we are behind again.
And now MJ is sick again!!!! :o(
We were supposed to go into see Lion King on Broadway last night. MJ decided Sunday not to go since she has been so tired. Tuesday night, all of sudden, out of nowhere, she spiked a temp, her heartrate jumped from the 80's to 130's, and wheezing. Did a breathing treatment and she coughed out a wad of stuff and everything went back to normal....however, yesterday, woke up with sats at 93, HR in 120's to 130's, wheezing, low grade temp. Coughing out dark yellowish/greenish stuff. After a treatment, her lungs sound great though. HMMM! We did nebs q 3 hrs yesterday and will do them throughout the night.
MJ blames herself. The other day, she said, "I would rather be sick with coughing then to be tired." Well, she also woke up full of energy and mucus.
Thanks. TTYL
Wednesday, February 18, 2004 8:01 AM CST
Here it is Wednesday and I haven't updated in a few. Where do the days and hours go????
Anyway, MJ is doing ok. She is still pretty tired and worn out and needing treatments all the time, but holding her own.
Saturday afternoon, we noticed MJ developed granulation tissue around her Gtube. Quite nasty looking stuff. Of course, this is the first time, so we didn't have anything to use. We tried Bactroban ointment, but that made it worse and people suggested eucalyptus oil....after a search through town, none was to be found. We tried diluted tea tree oil instead after a suggestion. I am pleased to report that the tea tree oil has been working. There is still a bit there, but it has decreased in size! YIPPEE!! Normally, doctors like to use silver nitrate sticks to burn it off, but we really weren't for that idea as it tend to hurt. Hopefully, we can get it all cleared up soon!
There is no school this week here in New York, winter recess. We are catching up from last week when MJ was so tired. We are only 3 days behind, so that isn't bad at all. That is all for now. Take care and TTYL!!!
Thursday, February 12, 2004 3:53 PM CST
Let's see, where does one start?
First of all, the good news.....MJ had sent her essay that was featured on SBW a couple weeks ago. Last week, MJ was asked to submit an essay to apply for a position as a community leader for SBW. She did and Tuesday afternoon, she was told that she is now a community leader. She also will be on the Kids Board of SBW to help plan for the future. How cool is that!!!!!!
OK, on to MJ's health. MJ is sick, with what we aren't really sure. Her lungs sound OK, as long as we do neb treatments every 3 to 4 hrs. Just saline nebs don't work, it has to be albuterol. UGH! So, we are doing them 24/7. Long days...just get done and it seems like it is time to start again. She is also really really tired. She went to bed at 11:45 last night, and woke up at 1:30 this afternoon and was ready for a nap a few hours later. She took a nap and is just worn out. Her fever is pretty low grade and secretions are plentiful and yellow.
MJ is pretty bummed out about this! This is the first time since September that she is actually bummed. Usually, despite being sick, she had energy to go online .... but this time if she goes online, she just doesn't have the energy to do anything. She is so bummed out that she can't even enjoy being online! :o(
Thanks all....TTYL!!!!!
Sunday, February 8, 2004 11:21 AM CST
Happy Sunny Sunday!! (at least it is here)
All is going ok here. MJ is still fighting her cold but she thinks it is winning. :o( She hasn't felt right all weekend but isn't sure what it is?? We are doing nebs more frequently to try to stop whatever it is. Yesterday, she woke up with a bad headache and her lungs were hurting pretty bad. HMMMMM!!!!!! We hope it isn't anything to bad. I will try to keep you updated on how she is doing!!!
Regarding school: she is liking psychology class. She has to do a service project for it and hopes her idea is ok with her teacher. One week done of second semester and she is pretty much caught up still. She is reading "The Hobbit" for English class and just has to read the next chapter for homework. She likes the book ok, but wishes it was something cooler or more her style! LOL!
Today, we are going to hang the curtains over the window near my bed. I am going to try to finish the suncatcher mobile I made...just have to cut strings for it. Hopefully, I can find yarn to tie my quilt that I am making for my bed, so I can finish it!
Until later, hope everyone had a safe weekend!!!!!
Thursday, February 5, 2004 0:51 AM CST
Hi all:
Well, MJ has yet another cold or something. We think we have caught it in time, and hopefully (knocking on wood) it won't go into pneumonia yet again!
MJ woke up this morning wheezing and very tight...she was very congested and coughing up a variety of colors of secretions! YUCK! Did breathing treatments and lots and lots of coughing, but never really cleared her.
Today was spent doing lots of breathing treatments and started her on high dose of Zithromax for 3 days to see if it will kick it right away. So far, so good!
MJ got her report card today. 2nd quarter grades are as follows: Speech: 95, Spanish III: 98, Chemistry (not figured yet), English (not figured yet), History: 93, and Math IV: 99.
Not bad considering she wasn't in school all quarter. LOL! She started intro to psychology Monday and is loving it! TTYL!!!!!!
Monday, February 2, 2004 0:08 AM CST
OK, I'm bad. I haven't updated in forever...but here goes. Last time I posted, I said MJ was a little more congested and it was her last day for antibiotics from the pneumonia. MJ woke up that morning with a sinus infection. She was started on Zithromax for 5 days which cleared it up. But,(of course, there is always a but) all those antibiotics have taken a toll on MJ. She woke up last week with a yeast infection almost everywhere....she had it on her hands, her back, around her tubes, and in her mouth. She was started on Diflucan for a month. The yeast is still there, but it is gone on her back, for now!
MJ is done with all work from first semester. Today, is the first day of second semester. She was taking speech, but that is now over, so her elective is intro to psychology. She is pretty excited about that class. She can't wait.
The weekend, we watched the Super Bowl and I did crafts. I made MJ a quilt Saturday.
Tomorrow we are off to the doc for follow up for the sinus infection and yeast infection. Not much else....LOL!!
I will try to update more frequently!!!!! TTYL
Thursday, January 22, 2004 8:58 AM CST
Things have been nice and calm this week....which is a good thing, since it is mid-term week. As of this morning, MJ has finished 3 mid-terms (Spanish, English, and History). Today and tomorrow she has Math and Chemistry.
Next week, MJ doesn't have classes because it is Regents testing week. You only go to school if you have a state test...MJ doesn't until June, so she gets a week off of school (which sounds funny since she hasn't been in school since September. So hopefully we will get all caught up in her homework.
Yesterday, MJ had a sore throat...and this morning she is a little more congested. Who knows. Today is her last day of the Avelox antibiotic and she still has 2 more weeks of Tobi. Hopefully, this is nothing and it shall pass quickly!
Monday, January 19, 2004 11:34 AM CST
Well, Saturday was an adventure!!!!! NOT!!!!! We had the angels watching over us today and we thank God they were here today. There had to be a bunch to prevent what could have happened this afternoon.
That morning, the rest of MJ's furniture finally arrived. After MJ woke up, we started to put stuff together. MJ's bedroom started getting really hot....it is the "hot" room, so we didn't think anything of it...but it got too hot so I went upstairs and turned off the system. After the system turned off, the pipes were knocking, pretty loudly, something that has never happened before. MJ was online, saying she was bored and there wasn't anything to do when all of a sudden, the fire alarms went off upstairs. We quickly called 911!!!!! IE: the picture!!!!! We had 4 fire trucks, police, and 2 fire chiefs here!!!! It seems that the angels protected us from the unseen dangers. The Carbon Monoxide was creeping up, upstairs and the heater was overheated and could have exploded soon if we hadn't turned the system off. Why the fire alarms went off in the house is a mystery....they were only on for a minute and turned off but thank God everything happened in the correct order and nothing happened. MJ never had to get out of bed...the Carbon Monoxide hadn't reached the stairway yet.
MJ was sure that Emma was here along with Mia and Taylor and Devon and Sidney, along with many others. We are so sooooo thankful that everything is alright here.
ConEdison came out and our whole heating system is shot!!! When they originally put it in 10 years ago, they really screwed up and this spring, the whole system needs replaced. They got it up and running safely for now and are coming back next week to put safety mechanisms on it until spring time.
Well that is our adventure of the day!!!!! We do NOT want any for a long, long time!!!!!
Friday, January 16, 2004 9:09 AM CST
Hi all:
MJ had a bad plug tonite. Around 7pm, she was on the computer...her alarm went off and I turned and looked at her and she was a tad blue! Her sats were 61. YIKES!!!!!!!!!!! Started coughing and coughing....got a bunch out but not all, she took the suction cath and put it to the back of her throat and got out the rest. Her sats went to 95 and couldn't get them higher but they kept drifting down. Coughed more, but none came out. Turned on the O2 and after 25 min, it was back up. MJ wanted it left on for a bit, so she was on oxygen for an hour. Turned it off and she sat at 96 until treatment time. Right now, sleeping, she is at 97 to 98. Her heart rate is elevated still...anywhere from 110 to 140....if she is sitting up, it is higher and even higher if she isn't on vent! Who knows! Leave it to MJ to confuse us all!!!! LOL!
Prayers are going out to Abbie's family after her passing and joining the other SMA Angels. Prayers continue for Connor after his successful surgery and wishes that he gets home soon!!!!!! We love you Connor!!!!!
Wednesday, January 14, 2004 11:53AM CST
MJ is doing much better, except her heart rate is too high when off her vent. When on the vent, her heart rate is 90 to 100....off vent, it is up above 120 getting to 150 if I don't put her back on. She is clearing out between treatments though, so that is good. She has thrush still from December. The gentain violet kills it but it comes back in 4 or 5 days after stopping it. UGH!
Tuesday, January 13, 2004 0:02 AM CST
Hi all:
MJ's J tube change went well. Of course, always a snafuu!!!!! When we got there, no one in outpatient surgery had an idea we were coming. After an hour they figured out that we were supposed to be there. UGH! We had to be there at 9, they came and got MJ at 11 and headed up to interventional radiology....where they were in the middle of a case and wouldn't be done for over an hour or so! UGH...The doc got mad and took us downstairs to the ER radiology lab where they kicked a guy out that was getting ready to start. We were in and out and back in the room in less than a half an hour. Went up and the doctor wrote orders that MJ had to stay and be observed for an hour and no feedings until then. MJ got very sad and I not so calmly asked about feedings. Tim went to get food. The nurse came back in and said, the doc said, fine, if you want to go home, go!!!! So by the time Tim came back up, MJ was almost up in her chair!!!!!! We got home at 2pm and MJ fell asleep at 3:30 and here at 5:30 is still asleep. She did really great during the procedure....when they pulled the old tube out, it got stuck and MJ said, "CRAP!" and then apologized for swearing!!!! LOL!!!!!! Other than that it was an uneventful day!! Hugs to all!!!!!!
Thursday, January 8, 2004 0:51 AM CST
I want to be the first to wish MJ a happy birthday on her sweet 16th day!!!!!!!! MJ is officially 16 years old.....not bad since the docs said she wouldn't live to be 3. Shows how much they know, right!!!!!!!!!! LOL!!!!!!! Way to go MJ!!!!!!! Thanks guys for the birthday wishes for MJ. She will love seeing them!! Today we found out that her J tube balloon burst, so probably next week, we will be heading to Jersey so she can get her tube changed. They do it as outpatient procedure. She doesn't mind getting it changed except the needle they use to numb the tract....it is huge. She was very bummed out that her dang ole tube burst right before her b-day! Her cold isn't any better...her lungs are starting to sound a little sluggish?!?!? She will probably start antibiotics tomorrow...gee, happy bday MJ, have some more drugs!!
On a good note, the rest of her furniture for her room will be here tomorrow!!!!!! Take care all!!!!! TTYL!!!!! and THANKS AGAIN!!!!!!!!!
1/7/04 1:44:34 AM
MJ woke up again congested and wheezy with lovely thick yellow mucus. UGH!!!! Talked to the doc, we decided to start off with a 5 day steroid burst and then do antibiotics if necessary...see if the steroids in the beginning do the trick. MJ said today, this one started in the chest, not the nose or head like usual! :o( MJ had 3 bad things going against her from the weekend: being tired out, exposure to tons of people, and a smoking environment. UGH! So, for now, MJ is on prednisone for 5 days. We will talk to the doc on Thursday to discuss the game plan! Other than that, who knows.
1/6/04 12:38:20 AM
So, MJ decided to wait until I got back to get sick. MJ is fighting something...not sure what, as of yet, but hopefully nothing. This morning, she woke up at 10am wanting a breathing treatment, sounding very wheezy and chunky. I let her sleep, and she slept until 2:30pm. Secretions have increased and are yellowish and her sats are 95 to 96...not her usual 98. Hopefully, tomorrow, she will be better, if not, hmm! Just thought I'd update you. Oh, her thrush keeps coming back. We use the gentain violet for a few days and it is gone and about 4 or 5 days later, it comes back with a vengence. Any suggestions. Nystatin isn't touching it!
1/5/04 1:22:34 AM
We are home. MJ is just tired and worn out. Yesterday, MJ was awake at 10am and up in her chair by noon and didn't lay down until almost 11:30pm. She had a great time.
1/2/04 1:09:48 AM
Well, tomorrow afternoon, MJ and I will be away. We are heading to Jersey to the Sheraton to stay until Sunday! MJ's aunt is getting married. We are staying both days at the hotel, where the reception is being held....this way we don't have to drive back over the bridge at night and everything will be close by if needed or if MJ needs to lay down. We will be online in the morning, but will leave around 2ish. Just thought I'd let yall know, so you don't worry if you don't hear from us till Sunday!!!! Hugs to all!!!!!!
Sunday, December 28, 2003 7:19 PM CST
Hey everybody,
Hope you all had a wonderful Christmas (if you celebrate it). I had a great one. I received many gifts on Christmas day. My favorite gifts were two pins my mom gave my dad and my dad has now given to me. I also received MANY dragonflies. For those of you who do not know I collect dragonflies and my dad went a little overboard this year. LOL On Friday I slept until 2pm. ;) Obviously I like to sleep. Yesterday (Saturday), I went to my grandparents house. I had a lot of fun hanging out with my family. We opened gifts, ate, and talked. I got a CD, a book on tape (Great Expectations (thanks Lauren for the recommendation)), a gift card to Target, gift card to Sam Goody, 2 photo albums, and (the BEST gift) a new mouse for my computer. All in all its been a really great Christmas. Next Saturday, I'm going to my Aunts wedding. I'm really excited and happy for her. Her fiancee is great and really nice to everyone. My cousin and I are handing out the programs and my other cousisn is reading a poem. My dad is singing at the wedding also. It should be really fun! Anyway, I will definitely update again before then. Happy New Year to you all!!! Love, MJ
PS sorry no new pictures. My digital camera batteries died and we didn't have anymore in the house. :(
Wednesday, December 24, 2003 12:18 PM EST
Hey all,
Its MJ again. Let's see, not much happening here. Just been doing homework, watching TV, & (of course) talking online. I can't wait for tomorrow. I don't know what I'm getting but I know it'll be good. Hope you all have the happiest of holidays! XOXO MJ
Saturday, December 20, 2003 6:33 PM EST
Yes all, believe your eyes! Its me, MJ, updating my own site! :) I'm doing good! I woke up at 8:45 (yes AM) today! Don't ask me why, I have no clue. I did homework (read Le Mis, good book by the way) and did my journal (offline, for school). Lets see, then I came online and talked to some friends. Then I watched Eloise (a gift to my dad from Brenda & I). It was really cute and funny. Dad made sausage soup for dinner but it tasted more like chili, it was good though. I just realized, you probably don't need (or want) to know step by step what I did today ut oh well! I'll probably update again tomorrow because I have nothing better to do..lol Anyway Happy Holidays to you all!! Prayers for all the SMA babies (and big kids) its a really rough winter for everybody. Prayers also for my best SBW homies, Lauren, Molly, Courtie, Adam, & Lyssa! Love ya'll mucho, MJ
Saturday, December 20, 2003 5:53 AM CST
Hi all:
Well, I am up already. Time to get ready to head out to the "cold north" (except after checking out the weather, it is to be the warmest today in Iowa!!!!! Go figure!!!!!!
MJ has had a fairly good week. All week we did homework, and I mean tons of homework. Since Wednesday, MJ did a math test, an English test, 2 history tests, a chemistry test and worksheet and a quiz, and wrote 2 speeches! I wasn't her favorite person, but she is glad she is done!!!!!! LOL! All she has left while I'm gone is 4 journal entries for English, to read her history book and write 1 paper.
Health wise, she is doing pretty darn good (shhh, you didn't hear me say that). As long as she gets 3 or 4 albuterol treatments a day, she stays open enough. She has a slight heat rash on her back, but that is slowly healing.
MJ had an appointment yesterday with Dr. Proskin. She said she sounded pretty good and she looked good too....actually had color in her face!!!!!!
Not much else to say, except Happy Holidays to everyone!
Saturday, December 13, 2003 0:27 AM CST
Today was a pretty good day. NO crashes at all!!!!! WOO HOO!!!!! Now to keep it like that. Tomorrow we are getting haircuts. MJ and my hair hasn't been cut since the beginning of September and it is driving us crazy!! MJ said no matter how horrible she feels, she is getting her haircut!!!!!!! LOL!!!!!!!!!! WIll write more later!!!!!!
12/12/03 3:12:06 AM Eastern Standard Time
What a day we had! Good and bad.
MJ's OT came over and left MJ a gift to use for a while. They worked on Dragon Naturally Speaking and Tracker 2000. Karen left the Tracker here for a couple weeks for MJ to try out. She loves it. It is pretty good but it has to be plugged into a power source. MJ did ask her grandma for the natural point mouse.
After Karen left, MJ rested for awhile then got up and went online. Right before dinner, she crashed again. Sats to 82 and wouldn't come up! UGH!!!!!! After 20 minutes of coughing, a neb and 15 more minutes of oxygen, they finally came up to 93. After about an hour, she was above 96. Never a dull moment. Not much else to tell.
12/9/03 2:28:07 AM Eastern Standard Time
Hi all:
MJ has been having some plugging issues lately but none too bad as today! Several times a day she will "throw a plug" and desat. After coughing, it will slowly come up. Tonite, an hour after neb, she desatted to 82 and her pulse was 150 and above and was having trouble. We coughed and coughed and could only make it to 88. After 20 some minutes of coughing and a saline neb, I had to switch on 2L of oxygen to stabelize her sats. After 10 minutes, she was back to normal. She said it felt like her lung collapsed...that as she took a breath in, her lung would squeeze in. Tonite after another cycle of nebs and vest and coughing, she sounded pretty good. Tonite she is doing pretty good. Her sats are at 98 and pulse is 110 (still elevated but not as bad). We are hoping it doesn't happen again! Maybe that was the last of it (wishful thinking here, never hurts, right)
Sunday, December 7, 2003 9:55 AM CST
Sorry for the delay again. We have been busy doing breathing treatments and coughing. Thursday morning, MJ woke up to discover that her cold had "moved south for the winter". She was very congested and there was a lot of extra sounding junk in her lungs. MJ was started back on Avelox for 2 more weeks. MJ's voice also is very hoarse and wet sounding. She has a lot of drainage into her throat and her voice disappears frequently. :o( Karen came and MJ tried out a head mouse and loved it!!! It is really cool. MJ wants one for Christmas!
Thursday afternoon, Darrin (above picture) headed back to avoid the nor'easter that is just leaving now. We got about a foot of snow. We have 3 to 5 foot icicles (photo page) hanging off the back of the house....very pretty, that is for sure!
Friday afternoon it started snowing and just stopped a few hours ago. The wind was whipping around and we were in a blizzard warning. Glad it is over. Looking back, a year ago, MJ was in the hospital during a storm too! At least we didn't have to drive in it this year like last year. We are taking it easy and staying inside today too. Maybe work on homeowork if MJ is up to it.
Other than breathing treatments and coughing every 3 to 4 hours...all is well. We have started wrapping presents and getting ready for the holidays. I have all my presents wrapped and ready to ship home. I am going home for Christmas for 11 days. I am very excited and can't wait. I will have lots of time to quilt and hang out with the family! Until later, hugs and holiday wishes to all!!!!
Wednesday, December 3, 2003 9:08 AM CST
Geez! I had posted an update Monday and it disappeared. HMM?!?!? Before that, we couldn't get on caringbridge...it would freeze the computer everytime we tried to get to the site.
Anyway:
MJ is over her pneumonia. She finished oral antibiotics on Sunday and has two more weeks left of Tobi antibiotic. Unfortunately, MJ now has a cold. GRRR!!!!!!
Thanksgiving was ok. MJ's family (from mom's side) came over along with her dad's friends from college. MJ ate some and got up to eat with everyone.
Friday, MJ and I did homework and watched Santa Claus 2 (very funny movie) as everyone went to NYC.
Saturday, I took MJ to her aunt's wedding shower. We made her a lap quilt out of fleece. Unfortunately, tons of people there were sick with colds :o( There were lots of people coughing and hacking away! Now MJ has that!
Sunday, MJ and I did some more homework. Trying to catch up on old English work.
We are very thankful for Starbright world. All of MJ's new buddies helped keep her entertained over the holiday since it was just me and her home most of the time. I could work on something and she would be having a good ole time chatting with her buddies.
We started MJ on Sudafed, but it knocks her out completely...so we only give it to her at night! Last night, my cousin Darrin flew in and is staying with us a couple days. He is interviewing for a job near by...how exciting.
Also, thanks for all the prayers for MJ's friend, Hannah!!! She is home and her platlet count is climbing!!!!! The above picture is MJ praying for Hannah during our candlelight vigil for her.
Saturday, November 22, 2003 10:52 AM CST
PLEASE, EVERYONE, PRAY FOR MJ'S BUDDY HANNAH. SHE HAS SMA AND IS HAVING PROBLEMS WITH HER PLATELET COUNT. PLEASE, WE NEED A MIRACLE AND HANNAH IS FIGHTING TO GET BETTER!!!!!! WE LOVE YOU HANNAH!!!!!!
HI all:
MJ is doing pretty good. The new doc was totally amazed. MJ sounds good between treatments. She can go 4 hrs without needing to cough or have a neb...so it is a step in the right direction. At least we have longer periods of time between treatments. MJ has thrush, but the gentain violet is doing its job. We use it at night and it stays gone until bedtime when she gets more!
MJ has been having periods of hiccups that are quite severe during the night. She starts (only while laying on left side) and usually stops after venting her belly (she is vented to a drainage bag all night but needs vented to air). This morning, she wouldn't stop though....gave her Maalox and that seemed to work then some Zofran for nausea. Hmm....not sure why.
Thursday, November 20, 2003 10:00am CST
Hi all:
Well, we think MJ is over the worst of it...but still not clear yet. Thank goodness for having antibiotics on hand and starting them asap. I think the combination of early antibiotics and frequent neb treatments and vest have really nipped this right away. MJ no longer sounds like she is drowning and her lungs sound so much better! We still are doing nebs every 3 to 4 hrs. Tonite while on the computer, her sats dropped to 72 and sat there....we coughed and coughed and coughed and did deep breaths...After 4 minutes, she was back up to 98. Go figure. We will probably go see the new pediatrician Friday, just so she can see for herself how well MJ is doing despite pneumonia on Sunday!!! MJ's room is slowly coming to order. We have filled 2 shelf boxes and started on two others. Pictures will be coming.
OH, we received word that MJ will be MISS MAY on the pulmonetics calendar!!!!!!!!! She is very excited. We should have the calendar in a month!!!! Watch out world, here she comes!!!!!!!
Tuesday, November 18, 2003 10:52 AM CST
MJ is holding her own right now. We started on Avelox yesterday and today she will start of Tobramyacin nebs. Her sats are maintaining at good levels if we do her nebs every 3 to 4 hrs....beyond that and she starts dropping and heart rate increases. Still running a temp of 102 to 103. :o( MJ is sick of nebs already but said they do make her feel better!! LOL!
Thank goodness for understanding doctors. MJ's peds is out of town for the week and I had to call a new doctor to the practice who we met in the hall once. She asked how I knew that MJ had pneumonia...went through the clinical signs and she said, "Oh, I guess so!!" LOL!!!! She called in the prescriptions for us and asked what she does next....told her we would keep her updated and see her if we can this week.
Thanks for the prayers.
Monday, November 17, 2003 0:22 AM CST
Hi all:
Well, we are back to the "it's never a dull moment" phrase here! :o( Last night, MJ was coughing, but it was more like a tickle, nothing productive or sounding like she had anything to cough out. Tried coughing, got nothing. This morning, she woke up with pneumonia...the help, I'm drowning cough...very wet and congested. UGH! From 10am until 10 pm we did her albuterol neb every 3 hrs. She's due to have one in an hour. After 2 hrs, she starts getting tight again and after 3 her lungs start to fill up! It will be a long night here, that is for sure. We used her vest 4 times today for 30 min each session. After treatment time, MJ would go back online (to talk to her buddies...who kept her in good spirits)!!!
Of course, wouldn't you know it, MJ's pediatrician is out of town all week. UGH! I am calling one of the other docs in the clinic to start her on Tobi again and Avelox. I hope I don't have to take her in tomorrow and can wait a few days. I do have a refill for Avelox so I just need Tobi called in! Dang, we were hoping that this sinus infection was gone and MJ was getting better, but she turned so quickly! Well, hugs to all. I will update tomorrow! TTYL!!
Saturday, November 22, 2003 10:52 AM CST
PLEASE, EVERYONE, PRAY FOR MJ'S BUDDY HANNAH. SHE HAS SMA AND IS HAVING PROBLEMS WITH HER PLATELET COUNT. PLEASE, WE NEED A MIRACLE AND HANNAH IS FIGHTING TO GET BETTER!!!!!! WE LOVE YOU HANNAH!!!!!!
HI all:
MJ is doing pretty good. The new doc was totally amazed. MJ sounds good between treatments. She can go 4 hrs without needing to cough or have a neb...so it is a step in the right direction. At least we have longer periods of time between treatments. MJ has thrush, but the gentain violet is doing its job. We use it at night and it stays gone until bedtime when she gets more!
MJ has been having periods of hiccups that are quite severe during the night. She starts (only while laying on left side) and usually stops after venting her belly (she is vented to a drainage bag all night but needs vented to air). This morning, she wouldn't stop though....gave her Maalox and that seemed to work then some Zofran for nausea. Hmm....not sure why.
Thursday, November 20, 2003 10:00am CST
Hi all:
Well, we think MJ is over the worst of it...but still not clear yet. Thank goodness for having antibiotics on hand and starting them asap. I think the combination of early antibiotics and frequent neb treatments and vest have really nipped this right away. MJ no longer sounds like she is drowning and her lungs sound so much better! We still are doing nebs every 3 to 4 hrs. Tonite while on the computer, her sats dropped to 72 and sat there....we coughed and coughed and coughed and did deep breaths...After 4 minutes, she was back up to 98. Go figure. We will probably go see the new pediatrician Friday, just so she can see for herself how well MJ is doing despite pneumonia on Sunday!!! MJ's room is slowly coming to order. We have filled 2 shelf boxes and started on two others. Pictures will be coming.
OH, we received word that MJ will be MISS MAY on the pulmonetics calendar!!!!!!!!! She is very excited. We should have the calendar in a month!!!! Watch out world, here she comes!!!!!!!
Tuesday, November 18, 2003 10:52 AM CST
MJ is holding her own right now. We started on Avelox yesterday and today she will start of Tobramyacin nebs. Her sats are maintaining at good levels if we do her nebs every 3 to 4 hrs....beyond that and she starts dropping and heart rate increases. Still running a temp of 102 to 103. :o( MJ is sick of nebs already but said they do make her feel better!! LOL!
Thank goodness for understanding doctors. MJ's peds is out of town for the week and I had to call a new doctor to the practice who we met in the hall once. She asked how I knew that MJ had pneumonia...went through the clinical signs and she said, "Oh, I guess so!!" LOL!!!! She called in the prescriptions for us and asked what she does next....told her we would keep her updated and see her if we can this week.
Thanks for the prayers.
Monday, November 17, 2003 0:22 AM CST
Hi all:
Well, we are back to the "it's never a dull moment" phrase here! :o( Last night, MJ was coughing, but it was more like a tickle, nothing productive or sounding like she had anything to cough out. Tried coughing, got nothing. This morning, she woke up with pneumonia...the help, I'm drowning cough...very wet and congested. UGH! From 10am until 10 pm we did her albuterol neb every 3 hrs. She's due to have one in an hour. After 2 hrs, she starts getting tight again and after 3 her lungs start to fill up! It will be a long night here, that is for sure. We used her vest 4 times today for 30 min each session. After treatment time, MJ would go back online (to talk to her buddies...who kept her in good spirits)!!!
Of course, wouldn't you know it, MJ's pediatrician is out of town all week. UGH! I am calling one of the other docs in the clinic to start her on Tobi again and Avelox. I hope I don't have to take her in tomorrow and can wait a few days. I do have a refill for Avelox so I just need Tobi called in! Dang, we were hoping that this sinus infection was gone and MJ was getting better, but she turned so quickly! Well, hugs to all. I will update tomorrow! TTYL!!
Wednesday, November 12, 2003 12:35AM CST
Well, MJ has yet another sinus infection. UGH!!! Tuesday night, her temp hit 102.2, she is bummed out but not too bad. Tomorrow she is getting her flu shot. We decided we can't wait until she is fever free...that might not happen until flu season is over! LOL!! Sunday night was very eventful...MJ's vent overheated and alarmed non stop until 3am when I finally gave up and switched vents!!!! Luckily, we were able to get a new one Monday afternoon! Hopefully, MJ can kick this sinus infection quickly without any settling down deep!
Sunday, November 9, 2003 10:35AM CST
Sorry we haven't updated since Tuesday. Things are pretty much status quo. MJ is over the stomach virus. She is eating orally once a day. She does has a tendency to throw up her nexium at night though...hmmm. She has had more secretions and a runny nose the past couple days, but her temp is around 100 all the time. We did go out Friday to mail packages and luckily it wasn't too too cold. Today we are hanging MJ's new curtains and shelving boxes. She can't wait to get her Holy Bears up. Other than that, MJ is keeping up with homework...we do our best work on the weekends...go through it pretty quick...we just need to work more during the week...LOL!!! The first quarter ended Friday and MJ thinks she is doing fairly well. Most of her grades that were returned have been A's with a couple B 's. And the best news, thanks to Cindy, we have finally FINISHED David Copperfield. WOO HOO!!!! Now, MJ can get caught up in English!!!!!! Hope everyone has a healthy week. TTYL!!!!
Tuesday, November 4, 2003 0:05 AM CST
Hello all:
Well, thought MJ was over this stomach bug MJ and I had over the weekend, as she ate last night, but was nauseaus all night and all day today. We are so glad for the J tube because she hasn't wanted anything by mouth or in her stomach at all! Besides last night, she hasn't eaten since Thursday night. After discussing her upcoming calendar role, we decided to update the picture, since the one they want to use is 3 years old!!!!! So today, MJ went rollerblading in her powerchair! It wore her out, but she had a blast....she "bladed" the dog..no, make that "rolled" the dog....or I guess "walked the dog" while blading. We had to have a current pic. Hard to believe, it is November 3rd and wearing shorts in almost 80 degree temps...but of course it is supposed to get cold this weekend.
MJ is still running a temp of 100 to 102, still has plugs in her left lung, and has a horrible stomachache. Not much else going on...just the same old stuff!!!!!
Anyway, here is a picture from today!!!!
Wednesday, October 29, 2003 11:52 PM CST
Hello everyone:
Good news!!!!!! NO broken bones. How that is possible is beyond us. MJ's bones have become very weak in the past couple years (is it any wonder with all that she has gone through)! It seems that MJ just twisted her ankle and sprained her knee or possibly tore cartlidge. We have a knee immobilizer to help when moving her so the pain isn't too great! MJ decided that to save her from future pain, she isn't going to let Wyatt up anymore. The risk is just too great for her to break something and she doesn't want to be mad at Wyatt!
We went in for X-Rays...she had 7 today. Decided to do a chest x-ray while we were there. Nothing new...just the same old stuff. MJ's lips were a tad blue for awhile there, but after a few deep breaths and changing positions, she got some color back. Still concerned with her CO2 level...we are pretty sure that MJ can't tolerate a "normal" CO2 level and that is why she is so tired. Not sure what to do about that though! She still has stuff in her left lung that just won't go away!!! Other than that, nothing else is new. Have a good day everyone!!!
Wednesday, October 29, 2003 10:37 AM CST
Hello all:
Tomorrow we are off to the doctor again. Not for the normal run of the mill thing!!!! MJ hurt her knee and ankle today...more knee then ankle!!! How you may ask!!! Think big, think furry....if you said Wyatt, you win!!!!! Wyatt was snuggling with MJ and thought he heard something and vaulted off the bed, pushing off on MJ's leg...she felt her ankle pop and her knee twisted...Her knee is a little swollen as is her ankle. Wyatt is now banished to the floor! :o(
MJ is still running temps (although lower 100 to 101 usually), still coughing up nasty looking stuff, her CO2 level has come down to around 40 but still feels tired, sats are for the main part fairly good...normally sits at 97, but will sit for hours at 95, which is low for MJ. Other than that we are status quo...just trying to figure out why MJ can't get over this stuff.
On another note, the rest of MJ's furniture should be coming this week (we hope). The curtains came today. MJ got "twisted curtains from Pottery Barn Teen. They are blue sheer curtains that come all twisted up and you just shake them out and they are wrinkley but look great. I hung one on the window and we will take a picture of it. We also added new pics to the clock and will send the picture tomorrow! We figure we have so many pictures that we can switch every week!!! MJ is loving it, keeps her happy looking at new kids weekly!
Hugs to all. Take care.
Monday, October 27, 2003 0:56 AM CDT
Hi all:
Figured I would send the picture of MJ using the Nasal Aire to you. Looks pretty comfy. She used it most of the day today with no problems. Her temp was down to 100 tonite, woo hoo...let's hope it stays there! She had a rough nite and day today as her temp was elevated and she was definitely feeling quanked again. One week done of Augmentin and one week left and 16 days done of Diflucan and 12 left of that. We are hoping that something happens before then....but she is still coughing up yellow mucus daily. YUCK!!!!! Well, here is the picture!
Oh, and no puking today!!!
Sunday, October 26, 2003 0:56 AM CDT
Hello all:
Well, nothing much new happening here. Friday and Saturday were quiet days. MJ stayed down and rested. She is still running fevers of 100.8 to 102.4 every day. Her lungs sound great except the lower lobes, way at the bottom. We just can't seem to get that stuff out, no matter how much we cough! She is also nauseous every day and throws up every night since the tube change....not sure why that is? The last two days we did do lots of homework from last week...we were so busy last week, that we didn't do much, but MJ cranks it out pretty quickly. Thank goodness she understands it fairly well and picks it up quickly!
Today MJ got the Nasal Aire mask in the mail from our good buddy Angela (thank you Angela). MJ was dead set against it before it came and now loves it. If I seal the exhalation holes she gets a great seal, but gets tons of air in her belly, so we leave them open and she feels better. Other than that, we are pretty much status quo. Everything is the same....That is all for now. Take care and don't forget to "fall back" tonite!!!!!
Thursday, October 24, 2003 00;06 PM CDT
Hello
How was your Thursday. Our was very long. MJ was feeling quite hoined (fatigued) and mawmsey (sleepy) after our day. We got the seat back fixed and 5 seat cushions to try and find the best one. We also found someone who will finally get us a new charger and new tires. UGH!
MJ is planning on being a maulifuff tomorrow (woman without energy) and relax and take it easy!!! LOL!!!! The past two days have really taken a lot out of her. Last night she threw up and today she didn't feel like eating until tonite and tossed some of her food again. She felt nauseous today, more so tonite. The Zofran stopped her from throwing up too much food. Well, that is all for now. Have a great weekend
Wednesday, October 24, 2003 4:06PM CDT
We are home!
It went well. NO IV!!! We just told the nurse we didn't need it! They did do a local and numbed the tract which MJ was upset about but was glad after it was done that they did it. It took about 40 minutes but we didn't start until 10am. It was supposed to start at 8:30 but they were backed up and then we said that they could take MJ down in the bed, not the guerney...it totally confused them. We did go see Madison and she looks great!!!!! She was smiling and waving at MJ. Right now, MJ is snuggling under the covers and resting. Her belly is hurting some, so she got some Tylenol and Zofran. Tomorrow is another long day as we are off to see Dave and Mike...for wheelchair and computer eval! Take care all!!
Tuesday, October 21, 2003 11:45PM EST
Hi all:
Well, tomorrow we are off at 6am to Newark to get MJ's tube changed. We found out this afternoon at 3pm that tomorrow morning MJ will be getting the new J tube. Just a refresher....the balloon burst a month ago but MJ was too sick to go get it replaced until now. She is still running a temp (100 to 102.4 today), sinus headache, earache....she is on meds.
It will be very hard tomorrow...we are getting up at 5am (have to stop feeds then) and head across the river. We will get to see Madison tomorrow and MJ is very excited. For those of you that know MJ, she has gotten together some stuff (in her never ending supply of stuff) for Madison. We hope that tomorrow isn't too rough or long on MJ and this doesn't cause a setback at all. It will be a long day for sure, for someone who hasn't been up except shower and runs to the doctor. Pray that all goes well. We are taking our camera to take pics of Madison and MJ. Take care all and TTYL.
Monday, October 20, 2003 11:45 PM EST
So, MJ has a sinus infection and we had to start MJ back on an antibiotic. She will be on Augmentin 750mg twice a day for 14 days. UGH! MJ wasn't too happy. For the next 3 days, she will also be on Afrin to help loosen stuff in her nose. We also did a sputum sample so we will see what grows if anything. She just finished inhaled antibiotics on Friday night, so aren't sure if anything we grow.
We also found out that MJ will be having her jtube changed in intervention radiology as Bethel said NO WAY to doing it in the OR. He doesn't want MJ there at all! Thank goodness! We should hear Wednesday when they are going to do it. Well, that is all for tonite. Take care all!
Sunday, October 19, 2003 0:55 AM EST
Hi all:
Well, today was no fun! MJ wanted to sleep and sleep. Finally got her up at 1:30pm. She felt misearable today. She still has a bad headache, earache and sore throat. Her temp was up to 102.6 today and we had to use the inhaled albuterol three times today (the first time since switching to oral albuterol). The albuterol actually made her pulse go down, sats go up, and temp go down. Her CO2 has been all over the place today. We had to use 2 L of oxygen this afternoon to get them up above 25....all night they would go from 25 for an hour to 45 or so. Very weird!!
Saturday, October 18, 2003 0:55 AM CDT
Hey all:
Well, MJ has a sinus infection. This morning, she was running a temp of 101, still had her sinus headache, increased secretions that were yellow and brown. Somehow, she has a sinus infection that escaped 24 days of antibiotics orally and 28 days inhaled antibiotics. Since she just came off, we don't want to restart her since the meds didn't touch it. For the weekend we are going to see what happens. We did start her on Nasalcrom to see if that helps. MJ can feel the difference a little bit. Tonite, MJ had a temp of 101.6. Sats are 94 to 97, pulse is 95 to 115. She is fighting it. We will see what the weekend brings and hope she gets over it quickly. We didn't hear about MJ's J tube change as Emily and Vanessa both had the day off today...so we have to wait until Monday. We just hope that they can do it next week as Bethel will be gone the following week. ARRGH! Have to wait till Monday to find out. That is all for now.
Friday, October 17, 2003 0:55 AM CDT
Hi all:
Well, what can I say, except I spoke too soon, even though I didn't actually say it. GRRRRR!
The last few days, MJ's sats have been a couple lower than usual. Just kept watching and waiting for the other shoe to fall....and I think it is falling now! Monday to Wednesday afternoon, MJ was fever free but it has slowly climbed back to 101. She was off the vent for several hours but today wanted it all day. She has a horrible sinus headache that medicine isn't touching. Yesterday was the last day of Avelox and tomorrow is the last day of Tobi! ;o( Who knows what is going on...here we were making plans for MJ to start back to school Monday for half days, but who knows now. Thursday we have computer and wheelchair evaluation appointment and hopefully tomorrow, we should find out when MJ will go to Newark to get her J tube changed. They are going to change it in the OR under floroscopy...we are hoping no anesthesia or IV needed and come home right away. Well, that is it for today.
Tuesday, October 14, 2003 11:58 PM CDT
Hey all:
Another few days gone by...pretty much the same. A little better and no worse. MJ's lungs are still open due to the liquid albuterol but still can hear stuff in them. Her temp is going down...hasn't gone above 100 in the past two days....so we are headed in the right direction. Dr. Proskin was impressed at how good MJ sounds just from switching from inhaled to oral albuterol....all she had to say was, I can't explain it!!!! I said why bother, it works, that is all that counts! Tomorrow is the last day of avelox and Friday is the last day of Tobi! MJ is excited...2 less drugs out of too many. Today, we got Silvadyne creme. MJ is getting nasty breakdown around her nose due to wearing the mask so much. :o(
Saturday, October 11, 2003 0:03 AM CDT
OK, brace yourself!!!!!!!!!
After three doses of albuterol, get this: MJ sounds open. She feels more air moving without even listening to her. I did listen and had to get a different stethoscope to make sure. LOL! Can you believe it. Truthfully, this is the best she has sounded in two years. Mind you, there is still some junk in her lungs, but what is open is really open! What is different from yesterday to today, you might ask!!!! The only, and the only difference is the oral albuterol! We did start Diflucan tonight so that can't theoretically be factored in as it was given after I listened to her lungs. MJ was so excited. We are so very thankful to Mary for guiding us down this path. I told MJ's doctor, I would rather try it and have tried it and not have tried it and always wondered what if! Totally amazing! We can't wait until after 6 doses!!! WOO HOO!!!!! We will definately keep everyone updated.
The downside, she is still running a temperature and coughing up yellow stuff. :o( Well, we can't expect all to be perfect all at once! But hey, we can cheer while we are at it for this baby big step!!!!
Friday, October 10, 2003 8:30 AM EST
Hi all: I did call Mary this morning and we chatted ab out MJ and all her problems. We talked about Nystatin oral vs Ginta violet and we are switching MJ to that. We are putting MJ on a 28 day stint of oral diflucan (for yeast). Dr. Proskin thought that was an excellent idea and wishes she had thought of that! We also started tonite on the oral albuterol. I will have to call Mary back tomorrow regarding wheezing and the need of breathing treatments if needed. Dr. Proskin wasn't too keen on the idea of it but said she was willing to try it as long as we monitor MJ carefully! We are hoping that this will help MJ get over the hump...she is still running a temp. Well, time to get to bed soon. TTYL!!!!
Wednesday, October 8, 2003 0:10 AM CDT
Hello again:
Where do the days go!!??!?!? MJ is still feeling quanked. Last night she went to sleep between 11:30 and 12 and I had trouble waking her up...finally got her awake around 1pm. MJ is still running a temp and coughing up yellow mucus but (Shh, don't tell anyone lest we jinx this) is actually sounding much better. She is on the antibiotics Avelox and Tobi for 7 more days and hopefully her feeling quanked will disappear too. Tomorrow we are off to see Dr. Proskin. Not much else is going on. Trying to catch up with homework. Before today, we were caught up in Math, Spanish and Chemistry! Not bad after missing over 2 weeks of school. I will post an update when we get home tomorrow. Hugs and prayers for all!!!!
Monday, October 6, 2003 0:10 AM CDT
Hi all:
MJ had an okay weekend. She is still running a temp...100.4 to 102.6. Tylenol will make it go down a bit but it just comes back up. She is tight in both lungs and has some junk in the right one. She isn't coughing much...it is way down deep, so nothing comes out. We are using the vest a lot. We are also doing nebs every 4 hrs throughtout the night...which seems to help. MJ learned a new word and said it describes how she is feeling. "I am feeling quite quanked!" LOL....quanked means overpowered by fatigue!!! We are going to email the pediatrician and let her know that MJ is feeling quanked. MJ is still on both antibiotics, but is done with the steroid burst. Not sure what is next....we are cancelling MJ's wheelchair and computer appt for Tuesday. It is an hour away and usually takes 3 hrs for both...today she got up for a shower and it made her totally quanked! MJ doesn't have school tomorrow or Tuesday...so she won't miss those days of school! Oh well, TTYL. Hugs to all!!
Friday, October 3, 2003 7:44 AM CDT
The past two days (wednesday and thursday), MJ did nothing but sleep. Not sure why, but sort of concerning. She would sleep 13 hrs at night, get up tired, and take a 2 hr nap during the day, then be ready for bed a few hrs later. After talking to the doc yesterday, we decided to restart the antibiotics. MJ has had a fever since Tuesday night of 101 or 102. We aren't sure if the illness came back or something else took its place. Today is also the last day of the prednisone. It did stop the wheezing between treatments so that is good. Last night we did the neb with albuterol q 4 hrs and MJ slept through it all...thank goodness!!
Emotionally, MJ is doing ok. She got hooked up to starbright world...and has made lots of new friends. Basically, SBW, is an online community of teens who have some disability or illness that go online and talk. It has been a godsend to keep MJ's spirits up. An FYI, for everyone, the age is 7 and up.
Well, luckily for MJ, there isn't school Monday or Tuesday here, so that gives her 2 more days to recover. She has an appt Tuesday for wheelchair and computer eval and hope she is up to it....we had to wait since April for this! That is about all for now. Hopefully, the antibiotic will kill this bug for sure now.
Wednesday, October 1, 2003 11:50 PM CDT
Another two days gone by...they seem to pass quickly yet so slowly. MJ is better, yet worse. Sounds confusing, but it is. The pneumonia has cleared....the wheezing has cleared between treatments...makes it sound good, but yet, MJ is now running a temp of 101 to 102. Tylenol will bring it down to 100 or 99.9 but not much further. We are trying to decide if it is the infection returning or something else taking its place. Today, MJ slept pretty much all day. Last night she was asleep by midnight, I woke her up at 12:30 (which she wasn't excited about). She was very tired and lethargic and kept falling asleep...finally by 4, I gave up and she took a nap for 2 hours. Woke up at 6 and by midnight was asleep again. GO figure! Leave it to MJ to totally throw a monkey wrench into it!!!! Keeping us on our toes. That is all for now. We will keep ya updated as to what is next! Hugs to all!!!!
Monday, September 29, 2003 11:50 PM CDT
The pnuemonia has cleared but is wheezing most of the time. Because of MJ using her vent 24/7, her CO2 levels are going down and she is feeling it. Every night we have been using 2 L of oxygen, bled through the vent for an hour or so, to bring the CO2 level back up. MJ started on prednisone today for 5 days. She is doing ok but gets scared when she tightens up so much. Not much else is happening...lots of homework, lots of breathing treatments, lots of drugs.....but at least the pneumonia is clearing. WOO HOO!
Sunday, September 28, 2003
MJ had a rough Friday after our visit to the doc. On the way home, she desatted to 60 for several minutes (Thank goodness for the inverter in the van that we could cough)...took a few rounds but she came up to 93. Friday night she was very lightheaded and her CO2 was low, so we bled 2L of O2 through the vent for 35 minutes.
Saturday morning was good...but as the day goes on, MJ gets worse....:o( Her temp was rising again and we had coughed so much that she lost her voice, had trouble swallowing and coughed up a little blood. Her throat was very sore.
Sunday we took it easy on coughing and her voice came back around 5pm. The Avelox is done as of tonite. There is still wheezing in her right lower lobe. Tonite we had to bleed 2L of O2 through again as her CO2 was at 25. After 30 minutes of oxygen, her CO2 is now at 33. After an hour on oxygen, she was at 35 and stayed there.
Friday, September 26, 2003 11:50 PM CDT
Today was ok, in the life of MJ. We went to see Dr. Proskin...little hairy driving over as MJ coughed and coughed. Luckily didn't get bad till we were outside the office, so we went in and coughed. MJ's G-tube change went well. The granulation tissue is almost gone, thank goodness! Had to cough 4 times at the office, went out to pay and had to go back in to cough again. Thank god for the inverter as we had to cough in the van 3 times on the way home (all of a 5 min drive). Luckily, we picked the best doctor ever, who said she would do house calls when MJ is bad. (we knew we loved her for a reason!!!!!) MJ's RT came over this afternoon to check equipment.
Tonite, unfortunately, MJ's fever started climbing again...got tylenol in her quickly, so hopefully it won't happen again. We also had to use 2L of oxygen as the frequent coughing made her CO2 get low and she was lightheaded. We did rent a couple movies (even though we have tons). This afternoon we watched Holes. Great movie and great book!!!!! MJ had to use Zofran twice...the antibiotic is really making her nauseous and the coughing tonite did. Well, that is about all for today. Time to go to bed. Take care and hugs to all.
Thursday, September 25, 11:50PM EST
Never a dull moment is sure holding here. The furniture arrived late morning. It is beautiful. White furniture with lavender inside the units. We have a cube on wheels for the vest with storage underneath and a TV stand on wheels with storage underneath for all of MJ's videos (tons and tons)...LOL I told MJ that if she ever says that she doesn't have any videos to watch, I will have to strangle her. Tim came home and we set up the behind the bed.
Anyway, MJ.....while I was taking a shower, she felt something pop. Tim thought she was being weird. She kept complaining about her G tube....can you guess where I'm going with this, yet????? The G tube balloon is now popped. Of course, this happened at 12:30am, so we are going to wait till tomorrow to change it. Strange, but both tubes are now taped to her belly. LOL!!!
Coughing is up and down. Fever has stayed down, which is good. Not much else is happening. Tomorrow we are off to the docs. She wanted to see MJ this week, and well, the week is almost over. Not our idea of fun. MJ hasn't been up since last Wednesday, so it should be interesting. Take care and hugs to all!!!
MJ is so sad that she can't go to UMDNJ Saturday to see everyone. TTYL
To see the events leading up to today, see previous entries.
Thursday, September 25, 2003 1:06AM EST
Another day, another update!!!! Well, today was a tad better. Talked to the surgeon who said that as long as we tape MJ's J tube really tight, we can continue to use it and wait to get it changed out. (Big sigh of relief goes here!!) MJ was extremely stressed out about this, so this helped. We increased MJ's feeds to 115cc/hr and it seemed to help thin out her secretions a little bit more, which meant more coughing. We were trying to listen to 30 min of chemistry class, but it took about 2 hours cuz we had to keep stopping and cough. Makes for a long day! The antibiotic is making MJ's stomach hurt, even though she gets it through the J tube. Zofran is really helping so she isn't throwing up.
The good news........MJ's new furniture will be here tomorrow morning. Pictures will soon follow!!!!!!!!! MJ is getting a built in closet, storage shelf, 2 book shelves, headboard shelf unit, TV stand and Thairapy vest stand!!!! It won't all be in place tomorrow morning, but hopefully, by this weekend, we can start moving the rest of the stuff in MJ's room and she will be completely settled in!!
Well, that is all for today! Take care and thanks for all the prayers. Keep them coming since MJ is starting to really tire of all the coughing!
Wednesday, September 24, 2003 1:06AM EST
Hello:
well, you know the saying....which one.... hmmm... how about never a dull moment or how about one step forward and 2 steps back. Let's see, which part first. MJ woke up this morning sounding pretty good, she said a 6 out of 10....but once she woke up, the coughing got progressively worse....each cough was an effort....the stuff has gotten thick and sticky, so at times she has trouble catching her breath when she needs to cough.... so she is extremely tired tonite. Tonite she felt like 4 out of 10. GRRR! So, then, MJ wants me to check the balloon on her J-tube, says it feels loose....so I check and don't really get anything out (thinking to myself...good thing it is taped on!!!!) and put 2 cc of sterile water in and then let go and none comes back out.......what does come back out looks a lot like Tolerex. So, we tried again, with the same result. The problem is that Dr. Bethel wanted the first change done under fluroscopy, which would mean an hour drive over, the change, and then coming home. MJ can't tolerate being up let alone a day trip, so now what? Thank god we have the tube taped on all the time otherwise it would have fallen out. UGGHHH!!!!!!! So, anyway that was our day!!
Tuesday September 23, 2003 11:06AM EST
Hi all:
Well, MJ is finally on the upswing, but by no means out of the woods yet. She feels better, but is extremely tired and sick of coughing. She needs to cough every 7 to 15 minutes. All of a sudden she gets a plug that she can't move much air at all and needs coughing right away. Luckily, with coughing, her sats bounce right back up. The humidifier is running non stop as with the vent. The Tobramyacin antibiotic (via nebulizer) is great! She brings stuff up without coughing while using it! If only it was all this easy!! Her temp stayed down today without any tylenol at all!!!!! She still sounds quite junky but we are making tiny baby steps in the correct direction.
Saturday, September 20, 2003 2:36PM EST
Hi all:
MJ started Avelox yesterday ( a tablet that we have to crush, ugh) and started Tobi today. Boy, the Tobi really worked, except she is coughing all day!!! We are going through spurts of coughing every 5 minutes. MJ is getting tylenol every 6hrs to keep her fever down....it was up to 103.3 yesterday. Hopefully, the Tobramyacin will help kick all this out right away. Please keep us in your thoughts and prayers. Take care and have a good weekend.
Friday, September 19, 2003 3:00PM EST
MJ has pneumonia. She is starting on Avelox and Tobramycin antibiotics today. They went for the heavy hitters instead of Augmentin. Since she went from wheezing to pneumonia in less than 12 hrs. flat, we knew we were dealing with something nasty. We are doing breating treatments every 3 hrs and coughing every 15 min. It has been a long, long day. We hope these two antibiotics kick it quickly. MJ says NO HOSPITAL!!!!!!!
Thursday, September 18, 2003 11:06 PM CDT
Hi all:
MJ had a pretty rough day here. Sats were sitting at 95 on vent...she said she is a vent-pap kid today! She wouldn't use the mouthpiece but stayed with nasal mask most of the day. She came off to cough, almost every 10 to 15 minutes, and went back on. From 10am to 10pm, I think she was off for maybe a total of an hour. :o( We started her on antibiotics, due to yellow mucus and fever. Tonite her sats are 91 to 94, CO2 is actually good, 37 to 42, heart rate is higher than normal, respiration is around 35. We did albuterol every 3.5 hrs, saline nebs if needed between, and used the vest for 2 hours and the percussor wand for an hour. What a long day!! We too were called by the electric company. So far, only a few sprinkles here and gusty winds...but so far, so good. This would NOT be a good time to lose power!! Hopefully, the antibiotics will kick in real soon, so MJ has a better day tomorrow. TTYL
Wednesday, September 17, 2003 11:06PM
Hi all:
Today was not Wednesday in the life of MJ...It has been declared "Wheezeday". LOL. Today, MJ was having a bad day...She was wheezy all day, needed nebs every 3 hrs. UGH. But she stayed in school most of the day...only left to go to the doc. MJ has the start of granulation tissue around her Gtube, and a sore on her back that is starting to heal. She also had an eye doctor appt. and will be getting glasses soon. We are going to Nicky's dad's store to get them. Maybe this weekend if she feels up to it!
Tonite, MJ didn't feel good at all. Lower than normal sats, higher heart rate, wheezing(she purrs and wheezes), thick secretions that are starting to change to yellowish in color....ugh. She was very upset tonite about it all.
Monday, September 15, 2003 11:08 PM CDT
Howdy everyone:
Well, we had a great weekend. We went to the startup meeting of the Connecticut Chapter of FSMA and met some new people. Had a great time. It cleared up in time for us to eat outside. Today, MJ was feeling pretty good and stayed all day. She doesn't eat during school (except through her tube). Wednesday she has an eye doctor appt. This summer she was having some issues with vision at distances. We will also see the pediatrician about two sores on her body....one on her back and one near her G tube...maybe granulation tissue there but she hasn't had it before so who knows. Well, That is all for now. Prayers are going out to MJ's bud Lauren who is having surgery this week, the Henry family, the Perkins family, and all the others who are going through tough times. Our hugs and prayers are with you all the time.
Friday, September 12, 2003 8:39 AM EST
Hi all:
So, we are about 99.99999ure MJ is micro aspirating. All signs tend to go that way. But I made a suggestion to Dr. P and she was all for it. So the plan for now is that at school, MJ is NPO! At home, she can eat, as long as we have an hour after she is done to do a breathing treatment and coughing to remove whatever she aspirated. There is really no treatment or cure for esophageal regurgitation, besides not eating, so, this is an acceptable suggestion. MJ can still eat as long as she can safely remove what she aspirated. MJ was so happy that Proskin agreed to it.
Today, MJ lasted 4 periods!! Tomorrow we are going to try for 5. MJ wants her strength back up because we are going to the FSMA CT chapter meeting on Sunday (can't wait to see you Me-ME). Gotta be ready for that!!!!!! Hope everyone has a great night. TTYL
Tuesday, September 9, 2003 10:39 PM
HI all:
We talked to Dr. P today about MJ's problems lately. The vomiting we aren't sure about....no clue...since it isn't a constant event and is spread out, it doesn't seem like a virus. MJ is pretty grumpy tonite....Dr. Proskin put her NPO (Nothing by mouth). We are trying to determine if she is micro aspirating on food or saliva. MJ is not a happy camper about this at all.
We did albuterol treatments every 4 hours today. Plus she gets Pulmicort twice a day and Pulmozyme at night. All we do is breathing treatments....just to keep the wheezing from happening. Who knows....the doc and I agreed it is MJ just causing problems...you know she has to keep everyone on their toes!!!!!! LOL!!!!! She has to be difficult.
We are going to try to go back to school tomorrow. She has to give her "about me" speech.
Sunday, September 7, 2003 5:02 PM CDT
Hi everyone:
MJ has her computer back finally. We are now able to get online all the time. MJ started back to school on Wednesday. She is in 10th grade and in honors program. She has a full schedule: Public speaking, 3rd year regents spanish, honors chemistry, choir, honors english, honors world history, and 3rd year honors math. Yikes!! Very busy. MJ has a new aide this year who is ok, but we sure miss last years aide. MJ survived her first week of school. She had to come home early Friday because she was throwing up. This is the second time that it has happened. Last Saturday and now Friday she needs to throw up, gets a headache and her temp goes up (104.8). After about 4 to 5 hours, her temp goes down and she feels better. Hopefully, it is nothing serious or ongoing. Well, I'll update pics now too. Our summer was great and healthy!!!! Hugs to all!!!
Saturday, August 23, 2003 1:07 PM CDT
HI Everyone:
We are still here in Ohio but are heading back Monday and Tuesday. We have been having a GREAT time and MJ is NOT ready for school to start!!!!!!!!! Summer vacations went by too quickly. Health wise, MJ is doing pretty good. She has been waking up with a wheeze and cough every morning...maybe allergies, maybe lack of one medicine we stopped. Otherwise, eating is fine, no more reflux!!!!!!!!!!
We will be home Tuesday evening. We won't be online much because our desktop computer doesn't have a modem and MJ's laptop had to be turned in to be fixed. We will be able to check mail and such, but not post pictures yet. Take care and TTYL!!!
Sunday, August 10, 2003 10:57 AM CDT
Hi all:
We are back from Maine. We had a great time. Weather was foggy and cool but that was fine with us. Our week went by way too quickly though. We arrived home late Friday night after being stuck in Boston rush hour on a Friday.....YUCK!!! MJ is doing great. Very healthy and full of energy!!!!
We are off to Ohio tomorrow for two more weeks of vacation. Then it will be back to school. MJ starts 10th grade on September 3rd. She is not looking forward to it.
Well, we will try to get online while in Ohio to update. Until then, take care!!!
Friday, August 1, 2003 11:00 AM CDT
Hello everyone:
Sorry for the big gap in time. We have been at the lakehouse having a great time. MJ is feeling wonderful and has tons and tons of energy (me personally am worn out trying to keep up with her, LOL!) We got home Tuesday, but our phone lines are messed up (what else is new) and can't get online at all. Today MJ and I are at TOYS R US with her father so we can go online and check out the store. Tomorrow we are off to Maine for a week and will be back next Friday. Then we will be heading to Ohio but will have the computer with us there!
Hope everyone is having a good summer. Take care and TTYL.
Sunday, July 13, 2003 11:13 PM CDT
Hi everyone:
We have been home for about 6 days and MJ is doing great. She came home on 60cc/hr for her feedings and this morning is up to 100cc/hr. She is still nauseous at times and at night her incision is quite painful because she is laying down. She is still taking her Reglan and Nexium. While in the hospital, her body was trying to reflux but wouldn't because of the Nissan, but she was still having the mechanics of it. With the Nexium all that is gone!!!! Her incision is completely healed and has only one stitch that is trying to come out. We have to change the pads around the J tube twice a day because of drainage but it looks pretty good.
Since MJ is doing so well, we are going to go to the lake house Tuesday afternoon. MJ's dad is on vacation till the 20th, so we are going up Tuesday and probably won't be back till the 30th. We know we will be home next Monday for the doctor and to do laundry and check email, but will be at the lake house (no computer access there). Other than that, all is pretty good here. MJ is feeling really good and has lots of energy. The TPN in the hospital really helped her as her hair and fingernails grew quickly and she actually gained strength in her legs and head. Now, while laying in bed, she can turn her head a bit from side to side!!!! Woo hoo!!!! We hope that this surgery is the last in a long time and MJ can go back to enjoy being a teenager!!!!! TTYL!!!!
Wednesday, July 9, 2003 11:13PM
Hi everyone:
Where does one start after almost 2 weeks in the hospital.
Thursday, June 26th
We arrived at the hospital on time but ran into insurance snaffoo's. Aetna decided that a J tube placement and nissen was an outpatient procedure and MJ didn't need to be admitted at all. After finally calling United, we were admitted. MJ had her favorite nurse to check her in, who still remembers everything, so that was easy...plus we take index cards with all med information, previous hospital info, vent settings on it and hand one set to the nurse and one set to the docs, so questions are answered right away without having to repeat oneself. We were told that an IV would be started at midnight but we requested one earlier. Thank goodness!!!!!!!! They started right after dinner (from IHOP). The PICU resident tried 3 times (top of hand) and whenever they got near the vein, it was blow. So, they called in a NICU nurse who tried 3 more times (one on each forearm, and once in her hand) and that blew each time. Next resident came and tried a vein between MJ's knuckles...it blew, then got a vein on the outside of MJ's left thumb and drew blood and then it blew. So she got an IV started on the outside of MJ's right thumb. We were done at 1am! UGH!!! MJ was a trooper during it all. I was doing relaxation techniques with her to calm her down and she would come up with some crazy comebacks that kept everyone laughing. Uneventful night as the nurses left us alone!!!!
Friday, June 27th
Surgery was scheduled at 2 but they had a cancellation so we were taken down at 11am. In pre-op, Dr. Patel gave MJ an nebulizer treatment to help numb her throat and versid, which she LOVES!!! After she got it, MJ said, "I really like that drug!!!" Helped get rid of pre-op jitters. Bethel came in and she told him what she wanted. The plan is to leave the G-Tube for meds and venting air (one of leading causes of nissen failure is air in belly), get the nissen (stomach wrap to prevent reflux of orally eaten foods), and have a J tube inserted (into jejunum for tube feeds). MJ told Bethel that she wants to be intubated after surgery for overnight so coughing would be easier (she told them all that if she wakes up and glares at them to just ignore her). She also requested to have a catheter (after she fell asleep) so she wouldn't have to be changed and moved around a lot. Her other requests were a morphine pump for pain and Finding Nemo characters for her bandaid (she took a picture of 8 characters from Finding Nemo so Bethel would know what she wanted). At 11:45 we went into surgery to get situated. MJ was given more versid (which she really loved at this point). I showed them the IV site and warned them that it would probably blow so find something better! At noon, I left and surgery began. At 4pm, she was back up in PICU.....mad!!! They inserted an NG tube that was hooked up to suction to drain her stomach.....she was not happy about that at all. Pain control was a major issue as Patel and Bethel wanted her drugged the first night but Sinquee didn't want to, so MJ was in major pain while they tried to find the right dose. MJ was signing to Sinquee, "Why don't you believe me that I'm in pain!!! Do you think I'm joking or making it up?" Sinquee got upset (oh well) and they finally hooked up the morphine pump!!! The night was uneventful. MJ's lungs were clear and coughing brought up NOTHING!!!!!
Saturday, June 28th
After a chest X-Ray at 6am, Dr. Nevado came by at 8 and asked MJ if she wanted to be extubated and put on her vent. MJ said NO, because of the NG tube, she couldn't use her mask. Nevado laughed at her and said that it would be taken out too, so MJ said yes, please extubate!!!! We tried coughing again and still nothing. The only concern while intubated was her CO2 level. Duh!!! They were concerned that it never went above 28 (35 to 45 is normal). We assured Nevado and Sinquee that for MJ that was high. They tried adjusting vent setting but it wouldn't budge, so she was extubated early. We had to use 1 Liter of oxygen as her sats went to 90 and just sat there. So, one liter was bled through the vent and her sats were 96 and above.
Oh, MJ got a central line for IV fluids and meds so that was great. We requested TPN to be given so MJ was getting total nutrition through the IV. Sinquee said no problem and she would write the orders. She didn't and either did a resident, so TPN wasn't ordered. Otherwise, she did good. Wasn't talking much but signed her needs and wants. She sucked on ice chips but suctioned out the water so she didn't have to swallow. Urine output was down to 10 cc per hour despite 100 cc IV, so she received 2L of saline in an hour. Finally, they decided she was dehydrated before surgery (we told them that) and started 140 cc per hour via IV. MJ started to spill ketones, so hopefully we can get TPN started.
Sunday, July 29th
TPN was finally started this afternoon after major fights with the surgery resident and PICU resident. They told us the risk of infection was too high to risk and losing muscle mass wouldn't occur. Jill came up from dietary and helped get it started. Jill was great. She is finally understanding more and more about SMA and fasting issues. She talked to us about risk vs muscle loss ans short term use. Unfortunately, MJ has a fever of 102. Not sure what is up. We think major atelectasis as her secretions are very thick and sticky! Pottasium was low and so was Vitamin K. MJ is getting a Vitamin K shot daily for 3 days. Pottasium was given via IV flush. Hopefully, the TPN will regulate that.
Monday, July 30th
J tube feeds were held off due to the fever. They don't want to run the risk of starting while she has a fever. She is now getting albuterol treatments every 4 hours with saline treatments in between...so breathing treatments every 2 hours. Long day!!!!!!!! Temp got to 102.6. Urine samples were taken before the catheter was removed. MJ did sit up further in bed and did ok with it. Not much else happened.
Tuesday, July 1st
Temp is down to 101. Chest Xray was same, no changes....so just atelectasis. If temp goes down, feedings will start tomorrow. MJ did throw up today via Gtube and Jtube. Both were draining to gravity but nothing was coming out...so I opened the container and stuff just poured out. Mostly was bile, but got over 150 cc via Gtube and 90 via J tube. Still NPO but sucking on ice chips to help keep her throat moist. Using her vent 24 hrs a day still!
Wednesday, July 2nd
Temp is down to 100 or so. Tolerex started at 4pm at 10 cc/hr. At 11pm, MJ wanted to open the Gtube due to air in her belly and about 70cc came out that looked a lot like Tolerex. Hmmm. We just ignored it and kept feeding. Around 3 am, MJ wanted to vent again, nothing came, so we flushed the G with 5 cc of water and 30 came out that looked like Tolerex. MJ was very nauseaus so feeds were stopped. Urine tests came back positive for enterococcus bacteria. While I was in the restroom the idiot day nurse came in with catheter kit and was going to cath MJ who by now was screaming. I told her to leave and get the doc that ordered the test who I made justify the test. They got a urine sample but not by cathing.
Thursday, July 3rd
Doctors were mad that we stopped feeding, but MJ feeling nauseaus was just not worth it. We were sent down for gastric study test again....with barium. I had to be obnoxious to get everyone to listen. While starting to transfer, we rolled MJ who started gasping. I tried to roll her back over telling every one to wait but was ignored. Finally had to scream to stop. MJ then said she couldn't breathe. DUH!!! The test showed barium moving the correct direction, so we were done. Unfortunately, MJ was on the hard table for 90 minutes....causing her tail bone to hurt and legs to go numb. She was crying while her idiot nurse kept assuring her she was having an anxiety attack. I finally told her to leave and not to tell MJ what she was feeling. She was in pain and not anxious about laying on the table. MJ passed out from exhaustion when we finally got back upstairs. Docs came in again and needed another urine sample...forgot to send the culture one down. DUHHHH!!!! What a stressful day. Feeds were started again late afternoon at 10cc per hour along with Reglan at our request. Of course, despite the test being normal, the feeds came back up and out the G tube. Sharon, night nurse, (who was our favorite when MJ had spinal fusion in 1997) took one look at it and said tolerex. Docs said throw it away and keep feeding. We did.....but by 3am, MJ was so sick, Sharon said just stop it.
Friday, July 4th
Docs were mad that we stopped feeds again and mad that we didn't save the drainage. They asked, they said NO! MJ joked that they wanted to use it on their evening barbeques. Food was off for the day, but the docs said MJ could have soft food if wanted. Dr. Sinquee ordered Reglan to be increased to 10 mg, 4 times a day. MJ was sitting up in her wheelchair for 2 hours when the first dose was give. (Before surgery, the 10mg dose made MJ sick). 10 min after the dose, MJ threw up via gtube. Tim got MJ a baked potate (she had been craving one for the past few days. She did great with it until the next dose of Reglan came...you guessed it......threw up. No more reglan was given!
Saturday, July 5th
Surgery resident was angry at Sinquee for increasing reglan dose. lowered it back to 5mg like before and we started MJ on 10cc of Pedialyte per hour via J tube since her belly was very loud. MJ tolerated Pedialyte all afternoon and evening with no loss out the Gtube. YEAH!!!! A step in the right direction!!!!!! Evening time went to 20cc/hr of Pedialyte....MJ got nauseus and was given Zofran and it helped and we stayed at 20cc.
Sunday, July 6th
MJ tolerated 20cc all night with no loss out the Gtube. At 5pm, MJ was switched over to 20cc of Tolerex. She did great!!!!!! No problems. Urine culture came back the same and they were going to start antibiotics but Sinqueen said NO! They wanted to see if MJ ran symptoms before starting. MJ also started to come off vent for longer periods off time, using mouthpiece more during the day and breathing on her own at other times.
Monday, July 7th
Switched to 40cc/hr of Tolerex. The bandage was taken off, so her Nemo characters were gone. The incision looks great!! It is completely healed already!!!! Saw Bethel and told him how great it looks. The plan is to increase to 60cc at 11pm. Also talked with infectious disease because the urine culture test came back Vanco resistant. They agreed that MJ needed to be treated right away. MJ was started on antibiotics at 6pm. The plan is, if MJ tolerates 60cc all night and tolerates the antibiotic we can go home in the morning. MJ had trouble with the midnight dose and 6am dose of antibiotics. She is getting 20cc of antibiotic via J tube along with the 10cc to flush plus the 60 cc per hour and started to feel sick. We figured it out at 6am and stopped feeds for 20 min after antibiotic to help her adjust.
Tuesday, July 8th
Saw surgery resident at 7am. Said we are cleared to go home!!!! Started packing and getting ready. But had to wait and wait and wait. Sinquee didn't start rounds till 10am, then had to wait till they were finished before they would remove the central line....then wait to write orders. When they finally did, they pretty much picked up everything in our room and put it in the hallway and said hurry up we need the room!!! By that time, I was a little perturbed. We sat there waiting all day. Kate, head nurse was trying to hurry us along all day, when we had nothing to do with it!!! Plus she had been glaring at us previously, like we wanted to stay in PICU that long. Finally at 12:30 we were ready to go. As we were leaving Kate was all nice, but I let her have it. She said, Oh leaving so soon! I replied shortly, yeah, you pretty much kicked us out. I also let her know what I thought of their fill in idiot nurses (another story in itself) and shoving us out of the room and so on and shut her up quickly. Said I was glad we were going home because at this point I couldn't stand her crap any longer!!!! Said goodbye and walked out without waiting for their assistance in going downstairs!!!! We arrived home by 2:30 after stopping and getting Tylenol with Codeine, Zofran, and Neurofurantoin. MJ did great!!!!
Wednesday, July 9th
MJ slept in until almost 10am. No disruptions or interruptions. I have to get up at midnight and 6am to do antibiotics. It was good to be home. MJ stayed in bed all day just relaxing. We did get a shower in today. Tomorrow we are off for first follow up with Dr. Proskin.
Thanks again for all your support and prayers during this time. They sure have helped make a difference. TTYL!!!
PS New pics will be added tomorrow....one of Nemo bandages and a couple from the hospital!
Tuesday, July 8, 2003 11:45 PM CDT
Hello all:
We are home, can you believe it. 13 days later, we are home. It was a long road but we are finally here. MJ was a super trooper and was awesome during the whole recovery and issues that arose at the hospital. I will write more later, but just thought I would let everyone know that we are home!!!! Boy, am I glad to see darkness and comfy bed and no interruptions during the night!!!!! TTYL
Thursday, June 26, 10:27 AM CDT
OK, brief note. We are off in an hour to the hospital. Hopefully, we will be home Monday or Tuesday. Please send prayers that this ends all of the problems. TTYL.
Tuesday, June 24, 2003 8:27 PM CDT
Hello everyone:
We had a great time in Washington DC. MJ was healthy and had a blast. She gave out around 200 beanie babies and buddies to all the kids that were there. The weather was wet most of the weekend but that was fine. MJ was so happy to meet some of her buddies that she mails cards too and meet new kids. Two doctors (from Wisconsin and Utah) had heard of MJ before and came up and talked to her. She was shocked about that!!!! She didn't know she was that popular!!! LOL!!!!
We are relaxing and taking it easy this week. Tomorrow we are doing her last final, Math and then she is done with school. Thursday she has to be at the hospital, University Hospital, in Newark, NJ between 1pm and 2pm. Surgery is scheduled for Friday afternoon. MJ will be having a nissen fundiplication (wrapping the esophagus around the top of the stomach to prevent reflux) and a J tube placement. So, she will have 2 tubes in her belly....the J tube for feeding and the G tube for medicine and venting. She is getting a little nervous but can't wait for it to be over.
Unfortunately, this means that our summer plans are all messed up. We were supposed to be in Denver, CO on the 10th of July, so our trip is cancelled. MJ will be in the hospital at least till Monday, June 30th and with a 6 day road trip, there would be virtually no time to recover, so we are going to stay home. Bummer but we are working on other things to do instead. MJ is staying pretty healthy despite refluxing all the time. Will write more later. Hugs to all.
Brenda
Monday, June 23, 2003 11:50 PM CDT
Hello everyone:
We had a great time in Washington DC. MJ was healthy and had a blast. She gave out around 200 beanie babies and buddies to all the kids that were there. The weather was wet most of the weekend but that was fine. MJ was so happy to meet some of her buddies that she mails cards too and meet new kids. Two doctors (from Wisconsin and Utah) had heard of MJ before and came up and talked to her. She was shocked about that!!!! She didn't know she was that popular!!! LOL!!!!
We are relaxing and taking it easy this week. Tomorrow we are doing her last final, Math and then she is done with school. Thursday she has to be at the hospital, University Hospital, in Newark, NJ between 1pm and 2pm. Surgery is scheduled for Friday afternoon. MJ will be having a nissen fundiplication (wrapping the esophagus around the top of the stomach to prevent reflux) and a J tube placement. So, she will have 2 tubes in her belly....the J tube for feeding and the G tube for medicine and venting. She is getting a little nervous but can't wait for it to be over.
Unfortunately, this means that our summer plans are all messed up. We were supposed to be in Denver, CO on the 10th of July, so our trip is cancelled. MJ will be in the hospital at least till Monday, June 30th and with a 6 day road trip, there would be virtually no time to recover, so we are going to stay home. Bummer but we are working on other things to do instead. MJ is staying pretty healthy despite refluxing all the time. Will write more later. Hugs to all.
Tuesday, June 17, 2003 10:28 AM CDT
All is ok here.
We have had a few quiet calm days, which is good.
Yesterday we went to the school to give presents and turn in tests and some books. MJ ran into her friends and had a great time. She was glad to see everyone!! Then we went to the doctor. We got a GTube ordered and it will be here tomorrow so we can replace it before Friday. Tomorrow is MJ's physical for school. Sounds funny to have to do it, since she has had more Xrays, tests and appts for everypart of her body lately...but oh well!!! MJ loves the doc.
Friday, we are off to our very first FSMA conference. MJ is so excited. We made pins to wear. MJ is sponsoring 7 kids who can't make it to conference and has them on her armrest. We also are making tshirts to wear with some kids pics on them. MJ will have 3 tshirts...one for each day of the conference. MJ is taking beanie babies for all the kids...last we heard about 200 beanies. She has 5 bags right now and more to go through. She will have more beanies than equipment to take!!! LOL!!!!
On another note, surgery is tenatively scheduled for the 27th of June. We should find out for sure tomorrow or Thursday. If so, MJ will check in the 26th, a Thursday. MJ will be having a Nissen Fundiplication and a J tube inserted. Hospital stay time is 4 to 7 days...hopefully 4!!! That's all the news that is fit to print for now!!! Check back soon and please sign the guestbook!!!!
Saturday, June 14, 2003 11:36 PM CDT
OK, MJ had the Big D all night. This morning she ate a little and we went to do meds. All of a sudden, MJ's G port in the tube plugged....couldn't get anything in or out. Tried and tried, but to no avail!!
Tim said change it to the regular G tube so we got stuff all set up. Figured ok, since the G and J were both in the stomach! Well, of course, you can figure out something went wrong. The new G tube wouldn't fit into the hole. Tried and tried but would not go at all. All we had to insert was a sterile 14 French suction catheter. So, we taped the tube onto her stomach and put the end in a ziploc bag for drainage. Headed to the local ER!!! After a long wait and a crazy neighbor, they tried to insert a bigger G tube which didn't work so MJ has a Foley urinary catheter in now. It is working for now. Will have to call around Monday to get things figured out and a real G tube. Never a dull moment!!!!!!! So, that is the scoop here. MJ still is having the Big D but not as often. I rigged up a drainage system like you all do....with Thera tubing, DMC floss, and a syringe. Hope it works. That is all for now.
Friday, June 13, 2003 11:30 PM
Hello all:
MJ had her GI study done today. It went pretty well. They don't use Barium but some nasty stuff. It was oily and sugary...reminded me of Karo syrup, all sticky and yuck!!! Well, the study showed something interesting. The whole GJ tube was all in her stomach, everything. So, we couldn't tell if the tube had burst because when they injected the stuff in the J port it all ended up in her stomach.....ugh!! So, that part was pretty easy, but Bethel wanted to check for a bowel obstruction so they bolused 120cc into her stomach, MJ hasn't been bolused since December so she felt pretty miserable....but did great. Made them stop. No bowel obstruction, so that is good. The radiologist and tech were great. Explained what was happening and why they were doing it and what they were looking for. The great part was that the resident was one we knew....she was in the ER in February when MJ was admitted to the hospital and she remembered MJ and talked to MJ and told her she would drop in to see her in 2 weeks!!! MJ was impressed....even noticed MJ's hair color right away!!!!
The bad part of the study was that dye....since it was oily, it is going right through MJ...food and all!! MJ has had the big D 3 times since 8pm. No fun at all!!!! UGH!!! MJ said she would rather have barium since it stops her up cuz she can take Miralax to loosen her up. LOL!!! We stopped at the peds doc on the way home and got more antibiotic....got enough till surgery and then some. LOL!!! MJ is on zithromax 6.2 cc per day, but insurance will only pay for 30cc/5 days at that dose.....so we had to lie to insurance and say MJ needs to take 12.5 cc/5 days so we have enough and don't have to go back every 3 to 4 days!! UGH, insurance companies!!!! Gotta hate them, but we went around them.
MJ is now done with three finals. She got her health final today and it took her 20 minutes....very easy and she wasn't in class much....only 8 days I think!!! So, she has done 3 and has 3 left. Not bad. Have to work on English this weekend......she has to write a critical lens essay (whatever that is)....the class has done 4 or 5 of them this year, and MJ has done NONE!!! Nice time to spring one on her, don't ya think!!!!
OK, this is long enough!!!
Thursday, June 12, 2003 6:42 AM CDT
Hello,
It rained today, need I say more as to why this update is late????? I didn't think so!!! LOL!!!!
Talked to the school today and 3 finals were sent home today, which leads to really great news!!!!! MJ's Spanish Final is not, I repeat, NOT next Friday!!!! WOO HOO!!! It is Monday. We started it today, the teacher will call and do the oral part over the phone tomorrow and we will finish the last part and be done early!!! We also did most of the history test, from the notes (open note test).....we didn't get class notes until today....hard to teach 4 months of history overnight so we are doing an open note test!!!! Oh well!!!!
Ok, so this afternoon we went to see Dr. Bethel! It was very humid here today. YUCK!!! Nice drive down, only took an hour today. Dr. Bethel was running late so that is when we worked on Spanish final. Talked to Emily and the resident. Emily explained that Dr. Bethel wants to do a gastric graphing study. Interesting sounding, huh?? That is going to take place on Friday morning at 10 am. MJ has to go NPO (Nothing orally or by tube) at 6am. All it involves is injecting dye into her Gtube and into her J tube and seeing where it goes. It is to check for a blockage or a tight area in her intestines. Bethel came in and talked to MJ about the options and MJ told him that she knew she needed a Nissen and the downfalls of it based on her weight and risks of Nissen failure and then told him she also wanted a J tube too. He asked why and she explained her reasoning and why it would be beneficial. Bethel said, that we could just do that and MJ told him she needed both because she still eats orally so lets do it all at once and not have to go back 6 months later and do something else....do all now and be done! Bethel was very impressed with MJ's planning and thinking it through. So, after Friday's test, surgery will be planned. Dr. Bethel talked to MJ and she never mentioned the conference but told him she has a state test next Thursday and he said he will wait till.......drumroll........after conference.......to do surgery. MJ just needs to stay on antibiotics till then and be near her in-ex and albuterol at all times to prevent pneumonia or more pneumonia. We did order the inverter, which should be here Friday, so we can run the inex in the van!!! What a sigh of relief that will be.
So, we aren't sure when surgery will be, but Emily said probably the 27th of June instead of the 23rd, but it is at least when conference is over. We aren't sure what that does to Colorado and Wyoming, but we are definately coming to conference!!!!!!!!!! And we will leave NY early Friday morning!!!!!! That is all for now. Tomorrow is busy doing finals and getting school stuff done!!!! TTYL!!!!
Tuseday, June 10, 2003 3:35 PM EST
Hey all,
Do you believe it, it's actually me MJ! I'm going to see Dr. Bethel tomorrow at 2pm. For some odd reason, he wants to do an upper GI test. Brenda will update tomorrow afternoon. Oh, please pray for my best homie Lauren! She has just about as many GJ tubie problems as me! Her website is http://caringbridge.org/ks/lauren/ . Please go and sign her guestbook to cheer her up! Thanks, MJ
Tuesday, June 10, 2003 8:54 AM EST
Hello again:
Things are pretty much the same, nothing new happening here. We had visitors on Sunday. We got ahold of the GI doc yesterday who talked to the surgeon. They are supposed to call today to set up a test....not sure what it will show. We will find out what they want to do before we decide what to do. We really just want this surgery over with now so MJ can feel better. Tomorrow is the last day of classes and finals begin. Regents tests begin next Wednesday and arrangements have been made for MJ to take them at home. Hopefully, I will know more this afternoon....until then ttyl!!!
Saturday, June 7, 2003 10:54 PM CDT
Hi all:
Well, we figured out what was causing MJ's whiney lung. The dang GJ tube has burst already. Last night I hooked up the G to the drainage bag and this morning, there was over 100cc of Tolerex in it (I dyed it red for the fun of it since MJ loves the colors). Ugh!!! MJ hopes Bethel can't do it till after conference.
To cheer MJ up, we went to Nemo this afternoon and were going to go out for dinner. Right at the end of the movie, MJ refluxed and started choking. We quickly rushed home for the inex and coughed and coughed. She laid down and then we sent tim out for dinner. MJ is really upset about it all! So, as of now, who knows what this will do to our travel plans.
Friday , June 6, 2003 11:48 PM CDT
Hello all:
Back from the doctor again! You know you have been to the doctor too many times, when you call to get an appt and they recognize your voice!!!! LOL!!!!
This morning, MJ was really congested and had a strange wheezing noise in her right lobe but I didn't say anything...wanted to see what the doctor thought! She listened and was sort of confused. MJ had the same wheeze that was almost a whine.....so we called it a whiney wheeze!!!! LOL! Said it wasn't pneumonia yet, but wasn't sure what to call it....MJ suggested bronchitis, since she hadn't had that yet, so she called it bronchitis but it is really like "pre-pneumonia". So, back on antibiotics we go. Did another sputum sample, that grossed the doctor out!!! That's about it for now. Hopefully, the antibiotics will kill it right away...if she isn't any better by Monday we just have to call for a stronger antibiotic and if worse, we do have to go in and get an xray probably! Blood sugar issues seem to be better. We only need to add juice to the night time tolerex mix but not the day time mix. MJ is less dehydrated now that she is up to 70cc/hr of fluids so that is helping too. TTYL!!!!!
Thursday, June 5, 2003 10:45 PM CDT
Hello:
Been raining a lot here so we are having lots of trouble getting online lately.
MJ still isn't feeling any better. Still has a sore throat and running a fever. Today she was congested too! Lots more coughing than normal. HMMMM.
Yesterday, we went to Jersey to see Dr. Monteiro again. Talked about MJ's next surgery, increasing MJ's rate, and vitamins. We started MJ on a multivitamin, and are trying to increase her rate up to 100cc/hr without causing problems to compensate for liquids she is missing since she can't drink. We are going slow. We are up to 70cc/hr from 60cc so we are doing pretty good. We have an appt. with Dr. Bethel, the surgeon on the 25th to schedule MJ's surgery in August. Hopefully, this surgery will be her last in a long, long time!!!!
Tomorrow we are off to the pediatrician again. She told us that if MJ wasn't better by Friday, back on antibiotics she goes. It has been 10 days of fever and sore throat and no antibiotics so we really aren't sure what is up! We did get a glucometer and tested MJ three times today (can you believe she likes to do it). This morning when waking up she was at 66, then afternoon at 95, then tonite at 120. Hmmm, will have to keep monitoring that!! Well, that is all for tonite. I'll update when we get back from the docs. TTYL!!!
Sunday, June 1, 2003 11:48 PM CDT
THE ABOVE PICTURE IS OF MJ GOING STREAKING!!!!!! LOL!! WE STREAKED HER HAIR TONITE!!!! WILL TRY TO GET A BETTER PICTURE TOMORROW!!!!
Saturday, May 31, 2003 0:48 AM CDT
OK, sorry I haven't updated, but these dang phone lines are horrible. If it looks like rain, our lines get full of static making it impossible to get online at all.
The Monospot came back negative and her white count was normal...so they are still waiting on the Epstein Barr Virus. It could be EBV or another virus or strep still!
MJ has been getting up in her chair for a while everyday. She does great for about 6 hours and then gets really tired. Today we went for haircuts. She is still having sore throats...worse then before, still running a temp, but didn't throw up tonite...woo hoo!!! I'm sure we will go back Monday or Tuesday to see what is up. Wednesday we have an appt. with Dr. Monteiro, the GI doc for follow up from the GJ reinsertion! That is all for tonite. Hugs to all. Are prayers are with all our buddies who are sick tonight!!!
Thursday, May 29, 2003 0:48 AM CDT
Ok, hard to believe, but here is the preliminary diagnosis:
Are you ready??????
Are you sure??????
MONO!!!! MJ got a lot of teasing about that one. They did manage to get about 20 drops of blood to do a monotest and CBC. We will find out tomorrow. If it isn't mono, it could be strep, but the antibiotics were giving a false negative test. I'll update more later...she is tired, still has a fever of 101, sore throat, and an on and off stomach ache. Who knows.
Wednesday, May 28, 2003 11:00 PM EST
The picture is MJ and her Grandma June (GJ) from Ohio in front of the apple tree. GJ and MJ!!!!
New update:
MJ woke up with by a thunderstorm and a 101 temp. HMMM! She ate pretty well, complained of tummy ache but not too bad. We did extra therapies and she tried hot tea with lemon juice...didn't help the throat, so coughed that out. Tonite she got all comfy in bed and threw up...not much, but ugh!!! So, tomorrow we are off to the doctor again! What will be next!!! Stay tuned for more details.
Wednesday, May 28, 2003 3:00 PM EST
Hi everyone:
MJ went to the doctor yesterday and got the all clear to go back to school today. She lasted 2 periods. Came home really tired and had a sore throat. Thought maybe the sore throat was from not drinking, so we tried hot tea, but it didn't help, except make her congested. (Don't worry, we coughed it all out). She fell asleep before 1pm and it is already 3pm. Who knows what is going on. She said she had a sore throat since last night but didn't want to say anything! What a kid!!
Not much else is going on here (but I guess the above is enough for now!!!). Classes are almost done with and finals are about to begin. Hard to believe it is the end of the school year and we haven't hardly been there at all!
Monday, May 26, 2003 12:43 AM EST
MJ did good with solids as long as she doesn't eat too much at once. A little at a time helps!! We had visitors Saturday and had a great time. MJ was up and about for 5 hrs and did great. Sunday, we went to the mall to celebrate my birthday. Ate at Don Pablo's and went shopping a bit. MJ is doing good and not drinking (she will drink water since that isn't as bad for her lungs as other stuff can be) and eating small amounts. Hopefully, she can go back to school next week. Stay tuned for more info!!!!
Friday, May 23, 2003 8:20 AM CDT
Well, we have figured out two problems already with MJ. 1) She aspirates on her saliva. When not actively swallowing, she cannot protect her airway....even while sucking on a piece of candy or chewing gum. She instantly gets congested and chokes. Since we figured that out, we went to no food but tried drinks. MJ does fine swallowing liquids but (always a but,) because of her esophageal regurgitation, the drinks tend to come back up and then she gets congested. GRRRR!!! Tomorrow we are doing no drinks and just food to see what happens. She was really upset about no food....kept telling me that because I was tired, if I shared food with her I would be more awake!!!!! LOL!!! I held out...but felt guilty about it....I tried to eat only things she hated so she wouldn't want any. At least tomorrow we will try food and see what happens.
The above picture is a gift from MJ's REC KIDS sponsor!!!! Thanks!!!
Wednesday, May 21, 2003 2:46 PM CDT
Hi everyone:
Please say prayers for MJ again!! We went to the doc to get an OK to go back to school, but that wasn't in the cards....MJ is got the start of pneumonia again!!! :o( Her left lung is starting to fill up with stuff so we switched antibiotics, increasing albuterol treatments and vest treatments, etc. Bach suggested MJ go NPO for a few days to see what happens. MJ sure won't like that I can tell you! Right now MJ is taking a nap. MJ said the news of pneumonia doesn't phase her anymore since it almost second nature now. Please keep her in your thoughts and prayers and we kick this quickly. TTYL and thanks.
Wednesday, May 21, 2003 0:00 AM CDT
Hello all:
Tomorrow we are off to the doc. MJ wants to go back to school but isn't sure she can handle it. Yesterday, we tried to take a shower and got her up in the air and she couldn't breathe so we quickly nixed that idea. Today we got a shower but it was hard. She got plugged up and was having trouble trying to cough it out and by the time I got her laid down, her oxygen sats were in the 70's. After oxygen, nebulizer and vest, she went back up. She is coughing up thick pockets of dried blood, very little fresh blood, but that old stuff is really thick and she is having trouble with it! Temp today was 100.8 to 101. She is still on the antibiotic since she isn't clear yet. She is also having trouble with solid foods. She does fine on soft potatoes and grits...but couldn't handle rice tonite. She is really frustrated right now.
Sunday, May 18, 2003 11:48 PM EST
HI all:
MJ had a rough day but is feeling better tonite. She was running a temp of 102.8 all day and it is down to 101 now. She is coughing up blood and gunk and is hating it. She is dependent on her vent as if she comes off, her sats drop to the upper 80's. You know MJ, she waits till we get home before she does this so they can't keep her in the hospital. She did say that she wishes she was still intubated so coughing is easier!!! LOL!!!! She will be home the first part of the week to get her clear.
MJ's classes end on the 11th of June, then a week of finals and then another week of regents. Sounds like a lot of wasted days, if you ask me!! If they don't have a test, they don't go to school. Oh well, less days is better. No wonder why they go until the end of June. We did get MJ's progress report for the 4th quarter....are you surprised....all A's!!! As of a week ago, she has missed 125 days of school!!!! LOL!!!! Well, time to finish reading emails...almost caught up!!! TTYL!!!!
Sunday, May 18, 2003 6:30 PM CDT
Hello, we are home!!!!
Didn't think it was possible, but we were out at 4pm today. Amazing!!!!!! We got to Newark at 3:30 and our room was ready. (Yes, we did go drop off MJ's English paper that was due Friday and the teacher told MJ to have a good day, almost like having fun when she said she couldn't be in class cuz she was going to the hospital...idiot!!!!). Friday night was uneventful. Good PICU Resident who got the IV on second stick with no problem. The nurses fought over who got MJ. LOL. Dr. Patel met us in the morning and said she would be intubating through the nose since it was so easy in December. They said 30 to 45 min and she would be all done. 90 min later, I went hunting them down. Finally found Dr. Montiero. MJ was still in the operating room (long story there) and was intubated and probably would be till morning. They weren't able to do nasally ..... MJ's epiglottis is really damaged...it is enlarged and extremely floppy. It had really deteriorated since December. GRR. Anyway, surgery was over at 11:45 and MJ finally got to her room at 2pm. MJ woke up at 3:30 and was probably swearing a blue streak but we couldn't hear her and probably glad we couldn't!!!! LOL!!!! After I told her to shut up and go to sleep that she was going to be intubated till morning, she did fine. She was just shocked at waking up and being intubated in her mouth and still being intubated. When Me-Me called, MJ's sats were approaching 70 and going down. MJ was brought up to PICU on 80percent O2 and Dr. Joe weaned her down to 21 quickly but made her crash from the drop to 21. Got the percussor and cough assist adaptor and suction and we were set. MJ got her needs know by using sign language. I taught MJ how to finger spell and she would let us know clearly what she wanted. Anyway, when MeMe called, MJ was at 72 and going down. I was suctioning MJ and needed to keep coughing MJ and Tim was stressed. I was yelling at him because he didn't understand the concept of "sterile field". I don't know how many times I had to keep starting over!!! LOL!!! So, anyway, after we got MJ back up using 100percent O2, they started weaning again, but more slower. She had a great night. Slept great but couldn't lay on either side, only her back. This morning at 9am Dr. Joe tested MJ and she was able to support herself without the vent and by 11am, she was extubated with no problem. Her sats never went below 94 the whole day today!!!!! We started food back up at noon and at 3:30, Dr. Joe said go home so we were out by 4!!!!!
Regarding the tube: it had never migrated! The Jportion had 2 tears in it due to the bend to insert into the jejunum. Not exciting...but the feeds were leaking into the stomach from there. Chances are it will happen again. Dr. Montiero said she isn't recommending MJ have it done again. Since intubation is more difficult, each time will get harder and harder for both and so, this isn't a future option. We talked about getting a Nissan and a J port and keeping the G port left there too. The only way left to accomplish all goals that would be the simplest. Well, sorry if this rambles, i'm getting tired. TTYL!!!!
Wednesday, May 14, 2003 3:43 PM CDT
Hello everyone:
Just found out, Margaret will be admitted to the hospital tomorrow. Her procedure will be Friday at 11:30 am. MJ will be admitted to PICU at University Hospital in Newark. We have to be at the hospital around 4pm tomorrow. All she needs tomorrow is an IV inserted before midnight when we stop feeds for the procedure. Hopefully, they will intubate MJ through her nose, so extubation will be easier and MJ won't be coughing up blood for weeks later. If all goes well, MJ will be discharged from the hospital on Saturday afternoon and maybe back to school by Monday! Please keep her in your prayers during this time as MJ is going into this procedure fighting aspiration pneumonia from reflux. We will update when we get home. We will have our cell phone if you need to get ahold of us, otherwise, we will talk to you Saturday!!!
Tuesday, May 13, 2003 11:57pm EST
Just a quick note: We are waiting to hear when the tube will be placed. It will either be this Friday or next Thursday or Friday. We will check in the day before and hopefully, MJ will be discharged the day after. We are just waiting for a bed in PICU. MJ will be intubated again for it, so pray it goes well and she will be able to be extubated quickly. MJ is still home sick...she is refluxing a lot more into her lungs and even into her nose....YUCK!!!! Keep checking back to see when we will be in the hospital!
Monday, May 12, 2003 6:44 AM CDT
Hi all:
Sorry I haven't written much. Our phone lines are screwy so I can't do much online. We keep getting bounced off.
The pulmonology appt was great! Dr. Needlemann is a great guy. Very knowledgable. We are going to have a sleep study done soon to help adjust the vent settings a little better. We are also looking into oxygen for our summer trip up to the mountains.
Tomorrow we have an appt with Dr. Montiero, GI doc at UMDNJ. MJ's GJ tube is all in her stomach, not the jejunum anymore and needs to be replaced. The reflux is back and bad. MJ has had an off week because of it. She missed school Thursday cuz of Dr. Needlemann and missed Friday cuz she was sick. Saturday she had a temp of 103.6 and was only down to 103 by evening. We stayed home today and rested (I took a nap). MJ has been on antiobiotics all week. Hopefully, tomorrow we will schedule the replacement of the GJ tube. Hopefully, really soon and that MJ will not have any problems anesthesia wise again.
We need to get this done ASAP since MJ's classes end in a month and then finals. She needs to be in school for all the review for finals and regents. Finals start the 11th of June and regents start the 18th of June. 3 finals and 2 regents. Well, time to go to sleep. Off to Jersey in the morning we go!!!!
Monday, May 5, 2003 9:46 AM CDT
Hello: Quick update: We have an appt. with Josh (Pediatric pulmonologist) on Thursday morning and with Dr. Montiero (GI doc) next Monday at 11:30am. Busy few days. On a great note, MJ is finally caught up in Biology and is actually ahead of the game!!!! WOO HOO!!!!
Sunday, May 4, 2003 7:46 AM CDT
Hello everyone:
Well, it is official. We went to the doctor and all indications are that MJ's GJ tube is all in her stomach. We are officially on pneumonia watch again. She is refluxing a bit more, so there is a greater chance for pneumonia now. We will call to schedule an appt tomorrow with the GI doc and to schedule the procedure. Needless to say, MJ isn't happy with this turn of events. It has been 5 weeks since she got it in and now has to have it done again. This means another 2 night hospital stay again. :o(
On a better note, she did go to school all week (except leaving early Monday). Yesterday we went to High Hopes for Anna fundraiser and had a blast. There was a great turnout and the weather was wonderful, perfect for flying kites. There were lots of kids there and we met lots of new people. We will try to update tomorrow when we find out when we are going to see the doc. Take care and TTYL.
Monday, April 28, 2003 5:17 PM CDT
Hi all
MJ here! We had an awesome time yesterday at the SMArtWalk. We met some new people and talked to some old friends too. It was nice and sunny (and guess who got sunburnt again? me...but it wasn't bad this time).
Today, I went to school. But, unfortunately I wasn't feeling to well. :-( So I came home early. I took a 2 hour nap and feel fine now! Some bad news...Brenda vented my g-tube and it smelled like Tolerex (which goes in my j-tube). So please pray my j-tube hasn't moved.
Will update again soon! Hope you had a great day!
Love,
MJ
Saturday, April 26, 2003 11:47 PM CDT
Hello,
Sorry I haven't updated this week. MJ went to school all day every day this past week! She lasted all day and did good. Friday, they had PLG day in the park again (no fights with the supervisor this time). It was rather boring but it was better than being in school. Of course, it was so nice, MJ's hands got sunburnt again...different sunscreen, same result. UGH!!!
Today we took it easy and went to the new Costco and out for late lunch/early dinner. We also did homework...MJ is almost totally caught up. Her biology teacher is about ready to shoot us for giving him so much to correct. This weekend, I have typed up 7 lab reports and 4 journal reviews. She has 3 labs left to complete and she will caught up in that with only 3/4 of a chapter left. WOO HOOO!!
Tomorrow we are going to the FSMA SMArt walk in Connecticut. We are very excited and can't wait. We will be taking our digital so hopefully, I will have new pics up soon. Take care and TTYL!
Monday, April 21, 2003 10:52 PM CDT
Guess what everyone??!!!
Tomorrow is the day we have all been waiting for!!!!!!! Margaret is going back to school. After missing the first three quarters of school (except for 8 days) MJ is going back tomorrow!!!!! Can you believe it???? She is very nervous and apprehensive about catching something else but is ready to go back. She is almost caught up in all her classes...we did so much biology over break, she was dreaming about cells!!
She is still having some issues that we are working on: CO2 being too low and yeast problems on her skin. Hopefully, we will fix them so she will feel better. She is still refluxing, but only 3 to 10 times a day instead of 3 to 30. We hope it stays this way. We tried to get her off Reglan but it didn't work at all. We did get MJ's breathing treatments down to twice a day instead of 4 times a day but can't go any further. MJ can't sit up in the morning until she has an albuterol treatment....she instantly chokes and her sats drop if we don't do albuterol and vest treatment. Oh well, at least it is keeping her sats up at night. Anyway, we are very excited that she is going back to school...and hopefully stay there for the last 7 or 8 weeks that are left!!! TTYL!!!
Wednesday, April 16, 2003 10:26 PM CDT
Hello everyone:
MJ is having a great time. Sorry to hear Madison is sick...we were hoping to get together, but not the right time. MJ got some sunburn today. Have had sunscreen on her but the sun reflected off her tray and burned her hands. UGH!!! Tonite we went to soccer practice to watch her cousins. Earlier today MJ and Aunt Jill "tried" to fly a kite....not really successful!! They had fun. MJ is not looking forward to going home...she is having too much fun having a good time and being healthy. She is still having CO2 issues that we are trying to figure out but is doing good. We will be heading back to New York on Saturday and will arrive home Sunday early evening. Take care and TTYL!!!!
Friday, April 11, 2003 0:56 AM CDT
Hi everyone
We did get the CO2 monitor today. I hooked it up inline to MJ's vent to monitor her readings throughout the night. Well, what a shock!!! They range anywhere from 5 to 35. (Normal is 35 to 45) Most of the time is below 25. I turned the alarm off on low CO2 because it has been going off most of the time. Her oxygen sats are doing great since we started the albuterol regularly....so far tonite she has been above 95!!!! Who knew albuterol would work so well!!
We are off tomorrow for the first part of the trip to Ohio. We stay overnight in Somerset, PA and then get up Saturday morning to drive the rest of the way!! I will try to keep everyone updated while we are there.
Tuesday, April 8, 2003 0:12 AM CDT
Well, I solved the problem by accident this morning. I was chatting with MJ's pediatrician and she suggested bleeding O2 through the vent for brief periods of time to help. So when MJ woke up, I added O2 through the vent circuit and since MJ was coughing lots, I did an albuterol neb with the vest. Her sats went from 84 to 95 in 3 minutes...without coughing. After the treatment and coughing we were up to 96 to 97. After 4 hours and her sats gradually climbing lower, did the same thing again and up the sats went. Bach said maybe aspiration of saliva and go off antibiotics. Pediatrician said off antibiotics, maybe the atelectasis or bronchospasms or who knows.
So, the game plan is this....albuterol treatments every 4 to 6 hrs for now to keep those sats up. Go off antibiotics (but I'm taking some with us to Ohio to have incase something happens!!!) When we get back, we will finally see Dr. Needlemann at Montfiore Hospital...who is a pulmonologist who has been helping Dr Proskin throughout this whole illness.
Tonite, in the 90 minutes since treatment, MJ's sats have been 91 to 96. Go figure....something as simple as albuterol treatment cured her!!!! Well, time to read emails and head to bed. TTYL! Hugs to everyone.
Saturday, April 5, 2003 11:46 PM CST
Hi all:
I got back Thursday night. It was a very short trip but it went well. We had a large turnout at the wake and the funeral was small. I got to meet my 7week old nephew, Jayce, who is cutie!!!!
MJ is doing ok. Yesterday, the "yeastie beasties" hit again! She has yeast growing all over her back, has thrush and it is in her lungs again! UGH!!! We are keeping her home from school this week since next week is vacation time...don't want to be sick for vacation. MJ and I are driving to Ohio on Friday and Saturday for a week. Need a change of scenery!!!
She is still refluxing, but not as often. The only difference we notice is that her sats are lower than normal at night. Normally, her night average is 95 to 98....well, since the procedure, she is sitting on average 89 to 94. We had to set the monitor to 80 at night otherwise we wouldn't sleep at all. She still desats some during the day, more than usual, but her lungs sound pretty clear! Not sure what is up with that?!?!? Any ideas????
Well, time to try to catch up with emails. Finally almost done reading email from when I was in Iowa!! Hugs to all!!!!
Tuesday, April 1, 2003 1:35 AM CST
Hello everyone:
I am getting ready to head to Iowa soon. I have a taxi coming at 4am so I gave up on going to bed. I will be back Thursday evening.
MJ had her appt with the pediatrician today. Her lungs were clear at that point. We decided to keep her on antibiotics for another week just to make sure. Of course, MJ only desated once while we were there. Tonite she is desatting a lot like usual. Earlier she got a major plug and couldn't get any air in at all and was gasping for air. We were using the mouthpiece on the In-Ex but no air would enter...so we switched to the mask and finally got the plug moved. I hope she stays healthy and doesn't get worse. It is time for a change! Well, time to go do something to stay awake before I leave. Hugs to all and I'll update when I get back from Iowa.
Saturday, March 29, 2003 7:28 AM CST
Hi all:
We got home Friday afternoon around 5pm. It was an eventful trip that is for sure. We are glad to be home.
We were supposed to be at Newark at 11am but I said we would probably be closer to noon. Well, we didn't get there till 1:30 which was a good thing as our room wasn't ready. We finally got upstairs to PICU around 3pm. MJ got checked in and settled pretty quickly. The hospital is redoing their grounds and there is now NO handicap parking. We did find help and Tim got a parking permit for the student parking lot so we didn't have to worry about parking. We had big plans to watch My Big Fat Greek Wedding Wednesday night but of course, with MJ, there is no easy! All of a sudden the TV lost sound. We had no sound at all....either with TV or VCR. So we "watched" shows on TV all night. They did get an IV started fairly easy (2nd try).
Thursday: They started IV fluids at 4am when they stopped feeds. MJ was scheduled to have her procedure at noon, being downstairs at 11:30. We got down at noon and they said they weren't ready so we headed back up. It stressed MJ out compeletly....we had to wait for 90 minutes!! MJ was a mess by the time we headed down again. Tim and I went in with her until she was out. Tim is upset at the anesthesiologist. We talked about intubating through the nose as it was easier to do. They both agreed but the guy ended up intubating MJ through the mouth. They finally got her intubated on the 3rd try, after putting her up on rolls under her shoulders with her head tipped backwards. Besides the ET tube, they also had the endoscope in her mouth. MJ's mouth is very sore and she is coughing up blood. She has several sores in her mouth and throat. The procedure itself went really well. The doc was pleased with how far she was able to get the tube down. We hope it will stay there for 6 months. MJ was awake and angry at them before they extubated. They wanted to wait but she glared at them until they extubated her. She had trouble maintaining sats for transport...she was 90 to 92 on 7 liters of oxygen. Once we got MJ on her vent after coughing a lot, she did great. She was coughing up blood frequently. Her throat was very sore and wouldn't swallow her secretions...so she had a nice rash on her neck from drooling. She ate some ice but didn't swallow. We had a long night suctioning her but she did fairly well. Feeds were started at 9pm at 15 cc per hour and to be raised 5cc after 3 hours.
Feeding wise, today, MJ was up to 50cc at 3pm so they let us go home. She is able to swallow now, but she is very sore. She is still coughing up some fresh blood but not surprising. The ride home was very tiring for her, so she has been resting and coughing lots.
Hopefully this will help MJ get better. She hasn't had any reflux but she hasn't been eating orally at all or getting much yet.
Tuesday, March 25, 2003 10:22 PM CST
MJ WILL BE ADMITTED TO PICU!! (thank goodness) Will update Friday if all goes well.
Well, we are all set. MJ is scheduled to be admitted to UMDNJ on Wednesday, March 26th around noon. We will meet Dr. Montera, the GI specialist and discuss all options. MJ is scheduled to have her GJ tube inserted at noon on the 27th. She will be intubated so they can insert it via endoscope. If all goes well, MJ could be home on Friday the 28th. Please keep MJ in your prayers that everything goes well and she will be extubated quickly and that the GJ tube stops the reflux. We will let you know if anything changes!!!
Wednesday, March 19, 2003 11:32 PM CST
Hi all:
We are back from the docs and MJ is sleeping. Dr. Bethel gave MJ 3 choices: 1) more aggressive meds and GI visit 2) GJ tube and 3) Nissen. Dr. Bethel called the GI doc to see what she throught right away. The doc discarded option one because MJ has maxed out on oral medication. After much deliberation, MJ will be getting a GJ tube placed next week. The downfall to this is that MJ has to be intubated for placement and an overnight stay. She is very nervous and scared about being intubated. We find out tomorrow, hopefully, what day it will take place. We will let you know.
Brenda & MJ
http://www.our-sma-angels.com/Margaret
If God brings you to it, He will bring you through it
Monday, March 17, 2003 8:58 AM CST
Hi all:
Thanks for all the support and all the mail. MJ had an SMA mail day on Saturday. It was great and really cheered her up. We have an appt. Wednesday to see Dr. Bethel at 2pm. We will discuss options then. Talked to the pediatrician this morning and she agreed with our decision to reduce the reglan back to 5cc instead of 10cc. She is also going to keep her on Zithromax until we see Bethel since she is refluxing still, just to prevent a major infection.
We did get MJ up yesterday and outside to enjoy the warmer weather. We ran to the store and pharmacy (and had a fight with them about one of her drugs) and then stayed outside and laughed at Wyatt who was playing with ice chunks. LOL! Right now, MJ does better reflux wise sitting up (she still does reflux) but worse respiratory wise as it just goes right to her lungs. So we are doing short periods up just to get her up and outside.
That is about it for now. I will update Wednesday night when we know more. Thanks.
Saturday, March 15, 2003 3:02 AM CST
Hello everyone:
Long night here. MJ has been refluxing again. We dyed her food blue and she is coughing blue stuff up out of her lungs...so it is reflux. We went to the pediatrician today and she agreed. She called the surgeon and they increased MJ's dose of Reglan to 10 cc instead of 5cc. Well, MJ's body did not like it and it caused lots of gas and pain in her stomach. We won't try that again, that is for sure....she is finally resting comfortably now.
The plan now, is to go see Dr. Bethel on Wednesday. If there aren't any other meds that would work (on Nexium, Reglan, and Simethicone) then MJ will have a Nissan Fundiplication surgery done. MJ is actually ready for it just so the reflux will stop. She refluxes anywhere from 3 to 30 times a day. Thursday, she refluxed 25 times in a row. Tomorrow is MJ's last dose of antibiotics, so we hope to keep her lungs clear. We are coughing after every reflux and so far her lungs are clear. TTYL
Tuesday, March 11, 2003 11:16 PM CST
Hi all:
Today we went back to the doctor. We aren't really sure what is going on, but we think MJ has a virus and a bad case of atelectasis (plugs). To be safe, we switched her from Amoxil to Zithromax for 5 days. Her sats are still going up and down all day and night and running a temp. During the night her lungs are filling up and we have to cough a lot. It isn't bad during the day, mostly her nights are long. We go back Friday to see where we stand.
Talked about MJ being down and nontalkative. The doc said she deserves to feel down after all that is going on but she is doing ok. Wyatt just has to get up on her bed and look at her and sing to her and she laughs. That is about it for now. Thanks for all the prayers but keep them up!
Monday, March 10, 2003 1:53 PM CST
Hi everyone:
Please keep MJ in your prayers. She isn't any sicker but is getting majorly
bummed out by this long bout. She said she is sick and tired of being sick
and tired. She didn't talk much at all today. She would sign what she
wanted.
Health wise: she is still running a temp of 100 to 101.6. At night, her
sats are 82 to 96, heart rate is higher at night...up to 135, during the
day, her sats stay above 92. Lungs sound pretty good...she is battling
atelectasis....her lower right lobe keeps getting plugs and we have to keep
doing treatments to keep them open.
We are more worried about her emotional health right now. She is getting
bummed out. Please keep her in your prayers. Thanks.
Brenda & MJ
Friday, March 7, 2003 10:50 PM CST
Hello again:
Well, MJ is back on antibiotics. Had a talk with Bach and the risk of pneumonia is greater than the risk of stomach upset right now. So, MJ was started on Amoxil for 7 days. We went with something not so strong but hopefully will kick whatever it is. The good news is that her lungs were pretty clear (of course it isn't a new doc and this one wouldn't listen to her lower lobes....so who knows). At first this doc (our old one) didn't even want to see MJ since she hasn't seen her for a long time and we should come in tomorrow morning. UGH!!! I said no, we are coming now and you will see her. We can't wait till Monday when Dr. Proskin gets back!!!!! Of course, for MJ, that means she is back on Nystatin. So she is on Amoxil, Reglan, Nexium, Simethicone, Nystatin oral suspension and powder, Albuterol, and Pulmozyme. MJ is not in the best of moods....too many drugs and no school for a few more days at least. We will also be getting a CO2 monitor here at home to monitor her CO2 level thanks to Bach. Millenium wasn't going to get us one when Dr. Proskin ordered it but we made Bach give the prescription to Lou, so we will have one soon!!!!
Brenda & MJ
Wednesday, March 5, 2003 10:51 PM CST
Hi everyone
Just thought I'd update you on MJ. Yesterday (Tuesday) we went back to school for the morning and came home pretty quickly. MJ was doing fine, but there was no classes. Her bio teacher was sick, so she had a free period, her chorus was moved since there was a teacher's luncheon in the chorus room and her Spanish class was cancelled due to the teacher's luncheon....so we just came home. We were there about an hour, but it still wore MJ out. She took a two hour nap. When she sits up in her chair, all the secretions drain into her lungs.
Last night, she had a rough night. She sat at 92 to 94 all night with desats down to 82 and heart rate in the 120 to 130's. We got up at 6:30 this morning but she felt horrible. We did 2 sessions of the vest and her sats wouldn't go above 92. We coughed and coughed, but it just wouldn't budge. Finally, we were both exhausted, so she just stayed on her vent and fell back asleep. I woke up at 9:30 with a horrible headache that lasted till about 6pm. MJ woke at 11ish. She did pretty good while I took a nap but by this evening, she was plugged back up, despite being on her vent most of the day, coughing and vest. Since it is supposed to snow tomorrow and she was not feeling good, she is sleeping in tomorrow. She is pushing herself hard and may have pushed too far.
Regarding her CO2 issues and being too low....I asked Dr. Bach how to help her. His reply was to come off the vent. I asked how does one wean off the vent when one is short of breath. His reply was that if I figured it out, let him know and we will write a paper!!!!! LOL!!!!!! So for now, who knows. We have been bleeding O2 through the vent for 10 mins a day since that seems to help. We don't want to do too much since we don't have the CO2 monitor yet. Well, hopefully, resting will help her feel better.
Monday, March 3, 2003 4:35 PM CST
Well, MJ went to school this morning. It was quite interesting reporting to the school nurse and delivering meds....MJ has 4. Since I'm there with MJ, she wasn't even going to bother trying to figure out timing, she would just let me do it. LOL!!! She lasted 2 periods or 90 minutes. She was so worn out when we got home. UGH! She ate a little lunch and fell asleep around 1:45 and here I am now at 4:10 and she is still sleeping. I hope she doesn't get sicker!!!
Well, after chatting with Bach, we think MJ's blue lips are from LOW Carbon Dioxide levels. Low CO2 over a period of time causes extreme tiredness and shortness of breath. The "normal" treatment is using oxygen....but of course how does one know when it goes to too much oxygen???? Bach said to shorten the time on the vent....but how does one shorten the time spent on the vent when one is short of breath. It is a catch 20 situation....what to do, what to do!!!!!! UGH!!!! Bach is going to order us a CO2 monitor at home. Then I will ask about Oxygen when her CO2 is low...and guidelines for all that. Hopefully, we can figure this out quickly. MJ still hates being off her vent except at school she won't use her mask so she tires out quicker since she uses a mouthpiece.
Saturday, March 1, 2003 11:07 PM CST
Hi all:
Well, the doctors appt on Wednesday really wore MJ out. She started to seem a bit better yesterday (Friday) but by last night, we knew something was up. Besides being tired all the time and out of breath when off her vent, her heart rate was up.
This morning she woke up and her heart rate was still higher than normal. By this afternoon, we could tell, she caught a cold. Not sure if if is from her dad or dad's girlfriend....but she has it now. More secretions, higher heart rate, lower sats, and a fever. She is so mad that she caught another cold. She wishes she would just get better NOW!!!!!!! She is keeping me on my toes. MJ's peds doc is on vacation this week, so hopefully, it will be a minor cold and nothing else.
Prayers are going out to Lily, Devin, Taleah, Connor and Ryan's family.
Also, prayers are going out to one of MJ's hugs and hope buddies, Connor H, who just relapsed.
Hugs to all!!!!!
Wednesday, February 26, 2003 11:05 PM CST
Hi everyone:
What a long day today. UGH!!! We had our appts with Dr. Bach and Dr. Bethel. Saw Dr. Bach first. Nothing new. MJ's bluish lips.....no reason why except maybe due to her low carbon dioxide levels. Normal is 35 to 45 and MJ was 22 to 30. Hmmm!?!?! Leave it to MJ to confuse everyone!!!!!! Otherwise, her respiratory status hasn't changed since November, so that is good.
Next, to Dr. Bethel. Dr. Bethel believes MJ has an infection around her gtube..like a cellulitis, so she is on antibiotics again!!!! UGH!!!!! Her thrush was almost gone. So, now MJ is on 10 different meds!!!! When will it end!!!! Dr. Bethel made me change MJ's gtube. It went pretty well, MJ is still a bit sore from changing it, but it is ok. She was surprised how much it did hurt....she said it was like being extubated....only through your belly!!!
MJ was very tired when we got home....just wanted to lay down and rest and sleep. We are going to have a quiet and restful day tomorrow. Well that is all for now. Hope everyone had a good day. Hugs to all!!!!!
Tuesday, February 25, 2003 11:19 PM CST
Hi everyone:
MJ is doing pretty well. We are off to see Dr. Bach and Dr. Bethel tomorrow afternoon. MJ has been using her vent almost all day, only coming off for short periods to eat or drink or rest her face. Her sats have been great, her thrush is going away, her yeast infection on her back is gone. She is still only tolerating 60cc per hour for feeds, so she is being fed round the clock. She actually likes it better than just being fed during the day, so we will probably stay like this from now on. She has more energy in the morning now and doesn't have to wait for the Tolerex to kick in now. She is still very tired though. A shower or getting up in her chair wears her out completely....she was up for 2 hours and laid down and promptly fell asleep tonite for an hour. She is so bummed that her energy level hasn't come back yet. We are shooting to go back to school next week, but aren't sure if she will last all day. Oh well, we will play it day by day. I will update tomorrow about how our day went. Take care and TTYL
Friday, February 21, 2003 7:21 PM CST
Hi everyone:
Sorry so long in the updates. Last Friday, MJ was supposed to get
a PICC
line inserted, but no one in the county would do it since she has
contractures in her elbows. We went to the pediatrician and couldn't
get an
IV started. After a phone call to Dr. Bach, we quickly came home,
loaded the
van, and headed to Newark. We were "supposed" to get a PICC line
inserted,
stay overnight, and head home.
Well, we just got home tonite. Since it was Friday and Valentine's
day,
and a holiday weekend, no one was available to start a picc line....so
after
almost 3 hrs in the ER, they got a regular IV started in MJ's wrist.
We were
admitted to PICU Friday night and she was given levaquin antibiotic via
gtube. Saturday, we were just hanging around waiting so Tim came home.
Saturday's levaquin made MJ sick. She threw up three times (through
her
tube, which amazed the docs and nurses there). The vomiting made her
stomach
spasm causing severe pain...the resident didn't believe MJ at first and
after
a few hours I yelled at him and MJ was given ativan via heplock. She
loved
that as it made her sleep really well but raised her heart rate to the
150's.
Sunday's dose was decided that she would be given Maalox first (4 hrs.
prior) then reglan 30 min before, then the antibiotic. Well, about an
hour
later, it all came back out. After three times of vomiting, they gave
her
karafate....a maalox type drug...which did nothing but was given Zofran
(?)
which did help. Monday, MJ decided that she would rather get the drugs
through the iv instead of a mix of two different ones through gtube.
The
line blew and the resident was able to start a line. Of course, the
antibiotic, Levaquin, was still so powerful, that it still upset her
stomach,
so feeds had to be stopped. Zofran stopped the cramping again.
Tuesday was
a bad day. The levaquin made MJ really nauseaous that we didn't get
any food
into her. Thankfully, she had her IV line to get fluids in. The
antibiotics
caused severe pain that Tuesday night, MJ was in horrible pain. They
gave MJ
ativan and some other drug that totally knocked her out.
Unfortunately, it
knocked her out completely...she had to be awoken to breathe. The meds
stopped her from breathing and her sats dropped into the 70's and her
respiration rate dropped to zero or 2 per minute. She was basically
only
responsive to pain, so I had to poke her foot to get her to breathe.
She was
like this from 7pm until 3am....Tim and I stayed awake to keep her
breathing.
Wednesday, they called in a GI doc, who said to start slow with feeds
on
Thursday but to go slowly starting at 20cc an hour and working up
slowly. We
also started MJ on Mylicon drops to help with the cramping and that
worked.
MJ slept most of the day away but did wake for a visit from Auntie
Laura
Marie. Yesterday, they started at 20 cc an hour for 2 hrs and worked
up to
40cc after 2 hours. They then wanted to go to 80 right away but we
refused.
We convinced them to let us stay at 60 and do feeds throughout the
night and
send us home. We arrived home last night around 5pm. MJ was glad to
be home
and Wyatt was excited to see her.
MJ is still very tired and worn out. The three days without
tolerex
really sapped her energy level, so she will have to sleep lots to gain
her
strength back. She is also on her vent non stop for now. Hopefully,
she
will be able to get back to her baseline soon and start to enjoy 9th
grade
and springtime. Sorry there were no updates, but we didn't have
computer
access. Thanks for keeping MJ in your prayers.
Friday, February 14, 2003 0:04 AM CST
HAPPY VALENTINE'S DAY EVERYONE!!!!
Hi all:
Well, today has been a hard day for MJ. She decided to go ahead and get the IV....sounds easy....WRONG!!!!! They started at noon today and finally found someone at 5pm to do it tomorrow morning. So tomorrow, MJ will get an IV (done at home) and get 2 different iv drugs. Tobramycin once a day and another one every 8 hours. Dr. Proskin wanted to do hospital but Tim called her and said no way. She agreed with Tim, but of course, easier said then done. Well, today MJ will get one dose of Cipro...half dose twice a day instead of the full dose. She is still desating on the vent. We did bleed O2 through the vent for awhile when her sats were in the 80's while she rested from coughing. So, as it stands, MJ will start iv drugs tomorrow via PIC line and we won't admit unless she gets worse. That's it for now. We haven't been online all day as we have been calling the docs and getting things set up. TTYL.
Tueday, February 11, 2003 8:15 PM CST
Hi all!
MJ here!!! Well, I'm officially a "normal" SMA kid...My poops are very very loose due to the Cipro. Yuck!!! Anyho, Today was an icky day in the life of me...I went to the pedi today. I had an x-ray and sputum sample done. The X-ray showed small pockets of pneumonia. Don't know about the sputum sample yet. (But here's the bad part) I had to bargain with the doctor to not to give me (are you ready?) an IV!!!!!!!!!!!!! My bargain was...No IV if I use my vent 24/7. I agreed. If I'm not ALOT better by Friday, I have to have IV antibiotics. UGHHHHH! And if I'm not better by Monday then UMDNJ and intabated for 2 days! Even bigger UGHHHHH! Please keep praying for me! I'm sure they will start helping! Thanks
Tueday, February 11, 2003 0:34 AM CST
Hi everyone:
Tomorrow we are off to the ped doc again. MJ's sats seem a tad better, they don't seem to be going down as often but still quite frequently. She did go for an hour today without one desat. Today we were given a timeline. If MJ isn't better by next Monday, at the latest, she will be admitted to UMDNJ and intubated. She is working really hard to get better....tonite we did the vest for an hour. She is going to do extra extra treatments to avoid that!!! We did get oxygen today for emergencies. We already had to use it. Tim decided that I needed to give MJ a shower....sat her up and she dropped to 82, had the O2 ready for blow by and she was able to maintain at 90 to 92. She felt better even though she hated the idea of using it. After shower, we immediately coughed and she used her vent and got her sats back up to normal for a bit. Tomorrow at the doc we are doing a sputum sample to see what grows. That is about all for now. TTYL.
Brenda & MJ
http://www.our-sma-angels.com/Margaret
If God brings you to it, He will bring you through it
Also, please check out her sma angels website....she has added new pictures to her photo album.
She also has 3 more websites for you to visit.
http://expage.com/smatribute This is a tribute to all of the kids who have passed away from SMA. She wrote this poem 3 years ago.
http://quiltsoflove.com/quilt/margaretP/margaretP.html This is Mj's second quilt done.
http://www.xsorbit1.com/users/TILIImonkey/index.cgi?board=our_kids&action=display&num=1042952605 This is MJ in the Cage website.
Please stop by and visit them and let us know what you think
Sunday, February 9, 2003 1:20 AM CST
Hi all:
Just a quick update. MJ is still sick. After an hour on the phone with Angela from Pulmonetics, we are playing with MJ's vent settings. I was able to get her breath rate down to 30 per mintue instead of 50. Her sats are still up and down though. MJ's pediatrician talked to a pulmonologist who she worked with and he can't wait to meet MJ when she is healthy. He switched her from Augmentin to Cipro for 10 days. He also wants her on Pulmozyme. He thinks that MJ might have more going on in her lungs besides the aspirational pnuemonia. Maybe another infection or two, or the atelectasis that gets caught in her lower lobes because her chest has caved in. Who knows. We will go in Tuesday to do a sputum culture to sees what grows....we know that candida will grow and probably staphlococcus aurelis (sp)...since she always does. We finally got the Pulmozyme. Well, that's about all for now. Talk to you later. Have a good weekend.
Also, please check out her sma angels website....she has added new pictures to her photo album.
She also has 3 more websites for you to visit.
http://expage.com/smatribute This is a tribute to all of the kids who have passed away from SMA. She wrote this poem 3 years ago.
http://quiltsoflove.com/quilt/margaretP/margaretP.html This is Mj's second quilt done.
http://www.xsorbit1.com/users/TILIImonkey/index.cgi?board=our_kids&action=display&num=1042952605 This is MJ in the Cage website.
Please stop by and visit them and let us know what you think
Thursday, February 6, 2003 11:28 PM CST
Hi all:
We went back to the doctor today. We were supposed to go tomorrow but
because of the storm we went today. Well, when I went to get MJ up, her sats
dropped to 72 and after ambu bag and assisted coughing they went up. The
whole 10 min drive to the doc, her sats were low....at one point down to 52.
UGH!!! We think her lung had collapsed today, but the drive over opened it
up some. She still has pneumonia but at least it isn't collapsed anymore.
The doctor was at a loss, wasn't sure what to do next. Bach said antibiotics
and cough more. So we switched MJ to Augmentin for another 10 days. Plus MJ
has a yeast infection on her neck so we started with the powder on that. MJ
realized that for the last 3 years, she hasn't taken any prescription meds
and now she is on 7. The pediatrician is calling her friend who is a
pulmonologist, to discuss putting MJ on pulmozyme to help break up the
secretions. She has only prescribed it twice before and wants to make sure
she should and stuff! Hopefully, we will hear from her tomorrow!
Other than that, MJ is ok. Majorly bummed about still being sick.
Reflux is still the same...she is relfuxing but it isn't burning anymore.
Also, please check out her sma angels website....she has added new pictures to her photo album.
She also has 3 more websites for you to visit.
http://expage.com/smatribute This is a tribute to all of the kids who have passed away from SMA. She wrote this poem 3 years ago.
http://quiltsoflove.com/quilt/margaretP/margaretP.html This is Mj's second quilt done.
http://www.xsorbit1.com/users/TILIImonkey/index.cgi?board=our_kids&action=display&num=1042952605 This is MJ in the Cage website.
Please stop by and visit them and let us know what you think
Wednesday, February 5, 2003 11:39 PM CST
Hi all:
Millenium came over today to play with MJ's vent settings since MJ has been triggering her vent 25 to 40 times a minute which makes her CO2 level low.
We switched her vent from assist control to SIMV mode...where MJ gets her 15 bpm plus the ones she triggers but only how much ever she triggers it for....she doesn't get extra air with it, just regular breaths. We will see how it goes.
About MJ now....she started off the day pretty well and kept her sats up after vest and nebulizer and coughing a bunch. August came and worked with her and as he was getting ready to leave she started dropping again. But she did stay above 90 for 3 hours. Woo hoo!!! But the rest of the day was up and down. We started MJ on pulmicort and it seemed to loosen some stuff up. The stuff is very thick and she is gagging while coughing because of it. One plug took her 20 minutes to get up...she could feel it in her upper airway, but we couldn't get it out. Her temp is still there, but low grade....it does go up when a plug moves around and she needs to cough...but no higher than 101.6.
On a great note, MJ got the results back from her biology test and semester grade (mind you, she has been in school 8 days the whole semester)....1st quarter grade was 104 %, 2nd quarter grade was 104.3%, semester test was 99% and semester grade was 103.1%. Not bad!!! Thank goodness for extra credit.
TTYL
Also, please check out her sma angels website....she has added new pictures to her photo album.
She also has 3 more websites for you to visit.
http://expage.com/smatribute This is a tribute to all of the kids who have passed away from SMA. She wrote this poem 3 years ago.
http://quiltsoflove.com/quilt/margaretP/margaretP.html This is Mj's second quilt done.
http://www.xsorbit1.com/users/TILIImonkey/index.cgi?board=our_kids&action=display&num=1042952605 This is MJ in the Cage website.
Please stop by and visit them and let us know what you think
Monday, February 3, 2003 11:33 PM CST
Hi again:
MJ is still feeling pretty lousy tonite. She can't lay on her right side as it hurts too much to breathe. Her sats were still up and down today with the alarm sounding every 15 to 30 seconds. She did have two periods of time where she didn't desat, but she was breathing really shallow so it didn't hurt and breathing quickly. Right now, she is triggering her vent 35 to 40 times a minute, so of course her sats will be ok. Her lungs have opened up a bit, but they are far from clear. Some areas have little areas where some air is moving through, but not much. She is half done with her antibiotic already. Hopefully, we can get her lung opened up and she can start feeling better. She is getting really down about this illness...this is one of the worst in a long, long time. Thanks for your prayers.
Also, please check out her sma angels website....she has added new pictures to her photo album.
She also has 3 more websites for you to visit.
http://expage.com/smatribute This is a tribute to all of the kids who have passed away from SMA. She wrote this poem 3 years ago.
http://quiltsoflove.com/quilt/margaretP/margaretP.html This is Mj's second quilt done.
http://www.xsorbit1.com/users/TILIImonkey/index.cgi?board=our_kids&action=display&num=1042952605 This is MJ in the Cage website.
Please stop by and visit them and let us know what you think. MJ's birthday pictures are located on the Picture Trail website, seen at the top of the page. Thanks.
Sunday, February 2, 2003 0:33 AM CST
Hi all:
Just thought I'd let you know how MJ is doing....today was a pretty rough
day. Her sats were lower than normal all day. She had a headache and asked
for advil for the first time in a long time. Her temp hit 102 this
afternoon. She is not her normal self...she is grumpy and tired. Her
oximeter was going off all day (set at 90). For awhile she was having
trouble maintaining 90 while on the vent. Her right lung has still been
pretty junky sounding... occassionally I can get it open but it just fills
back up. This could be a long process. The nexium seems to be working ok so
far. MJ hopes it keeps working and doesn't quit like the zantac did. She
hates all the meds because she gets so full from them and having to flush the
tube.
Also, please check out her sma angels website....she has added new pictures to her photo album.
She also has 3 more websites for you to visit.
http://expage.com/smatribute This is a tribute to all of the kids who have passed away from SMA. She wrote this poem 3 years ago.
http://quiltsoflove.com/quilt/margaretP/margaretP.html This is Mj's second quilt done.
http://www.xsorbit1.com/users/TILIImonkey/index.cgi?board=our_kids&action=display&num=1042952605 This is MJ in the Cage website.
Please stop by and visit them and let us know what you think. MJ's birthday pictures are located on the Picture Trail website, seen at the top of the page. Thanks.
Thursday, January 30, 2003 at 11:46 PM (CST)
Hi all:
Prayers are definitely needed for MJ. We went back to the pediatrician
today because MJ's reflux was getting worse. We were there for an hour :o(
We started MJ on Nexium. The doc listened to her lungs and MJ has
aspirational pneumonia. Part of her lower right lobe was completely filled
with stuff and further up was rattling. She was shocked at how well MJ
looked. So MJ is on a high power antibiotic...mega dose! UGH! They gave it
to us as capsules to dissolve in water otherwise we would need 800 ml for 10
days. So now, MJ takes reglan 5cc 4 times a day, nystantin 5cc 4 times a
day, nexium 1 capsule once a day, and Clindimyicium 4 capsules 3 times a day,
plus her albuterol nebulizer. She feels completely "drugged out" and is
majorly bummed about it all. We are so glad that we went today and caught
this early...it looks like it could have gotten really bad really quickly,
but hopefully we caught it early enough to get her cleared out.
Also, please check out her sma angels website....she has added new pictures to her photo album.
She also has 3 more websites for you to visit.
http://expage.com/smatribute This is a tribute to all of the kids who have passed away from SMA. She wrote this poem 3 years ago.
http://quiltsoflove.com/quilt/margaretP/margaretP.html This is Mj's second quilt done.
http://www.xsorbit1.com/users/TILIImonkey/index.cgi?board=our_kids&action=display&num=1042952605 This is MJ in the Cage website.
Please stop by and visit them and let us know what you think. MJ's birthday pictures are located on the Picture Trail website, seen at the top of the page. Thanks.
Sunday, January 26, 2003 at 12:33 AM (CST)
Hi everyone:
Friday, we went back to the doc. MJ had a chest xray, that was ok. Just showed atelectasis all over. The most alarming news was that her ribs have sunk in even more....it explains why her vital capacity was down. For all of you that have met MJ, you all know how big she is, but to see her x-ray is quite scary. Her lungs and ribcage are so tiny. Ugh! We are to just keep coughing and air stacking in hopes of getting more air in her lungs but all that time of not getting air at night was quite damaging. :o(
She is still running a low grade temp, due to the atelectasis. She is still having a few episodes of reflux but it doesn't burn or taste bad....she says it feels like floam. LOL. She told the doc that her mucus feels like GAK. LOL! At least the doc knew what she was talking about.
MJ will be staying home next week. The school called and said that they will be bringing everything over (it is midterm week, and they only have to go in for tests) so she doesn't have to come and risk catching something else!
So that is all the news for tonite. We went out for dinner tonite. It snowed most of the time we were out. TTYL
Also, please check out her sma angels website....she has added new pictures to her photo album.
She also has 3 more websites for you to visit.
http://expage.com/smatribute This is a tribute to all of the kids who have passed away from SMA. She wrote this poem 3 years ago.
http://quiltsoflove.com/quilt/margaretP/margaretP.html This is Mj's second quilt done.
http://www.xsorbit1.com/users/TILIImonkey/index.cgi?board=our_kids&action=display&num=1042952605 This is MJ in the Cage website.
Please stop by and visit them and let us know what you think. MJ's birthday pictures are located on the Picture Trail website, seen at the top of the page. Thanks.
Friday, January 24, 2003 at 12:31 AM (CST)
ok, sorry I didn't post last night, I was really tired.
We got ahold of Bethel yesterday, who said that since the meds weren't working, MJ now needed the Nissen. I quickly jumped in and told him to back the boat up...mj wasn't on any meds.
So, he said find a GI doc locally and start on meds first. We called the new, great, terrific pediatrician. Got right in to see her and started MJ on reglan and zantac. She said we would hold off on the GI until we need them. That is good. Said to come back Friday if MJ is still running a temp....you guessed it, she is. So, tomorrow, we are off to see the doc again. Probably do an X-Ray and who knows what else. MJ is really getting sick of being sick! I'll try to update tomorrow or Saturday on what we find out! TTYL
Tuesday, January 21, 2003 at 12:30 AM (CST)
Hi all:
MJ is still sick. We think we might have figured it out. UGH! Before surgery, MJ had an Upper GI done, that showed only 1 epsiode of reflux along with esophageal regurgitation....well, we think she might be refluxing now. Since her surgery in December, she has had 4 to 5 times where she refluxed and could feel it but she also has these episodes where she hiccups, but it is a deep one. In the past two weeks, when she does it, she usually starts coughing a lot, sats drop a bit and gets wheezing and bronchiospasms.
We have a call into Dr. Bethel (surgeon) to see what the next step is. We know she needs meds ASAP so hopefully she can start feeling better quickly. We will update when we know more. Thanks.
Wednesday, January 15, 2003 at 12:28 AM (CST)
Hi all:
Well today was fairly productive. MJ's regular doc (who we dislike) was booked, so we saw a new doc. MJ loved her. She sat and talked to MJ for quite a while and listened to her and offered suggestions. Amazing!!! She is right out of her residency and works part time in a NICU in NYC. She has worked with a pulmo from NYC who uses the cough assist even. She never heard of Bach but said he sounds great!!!! YES, we are going to switch to her now!!!!
Anyway, MJ's incision is looking much better, only one small spot that is still oozing, but not bad. They removed the stitch holding her tube in place since it was completely above the skin. She looked at MJ's back and recommended tea tree oil for the regular spots and bacetracim on the open areas. She is a minimalist, doesn't like to prescribe lots of medicines if herbals work. MJ's lungs have been having bronchiospasms, so MJ got a nebulizer with albuterol/saline mix. It is helping. We do it inline with the vent, so MJ uses her vent and nebs and the same time. Tonite we did it with her vest and boy oh boy, did the stuff start coming out. MJ was very happy and glad that it works. Hopefully, this will help her get better now. TTYL
Tuesday, January 14, 2003 at 12:25 AM (CST)
Hi all:
Well, tomorrow we are going to the pediatrician. The stitch that Bethel puts around the tube to hold it in is now on top of the skin....MJ's body has pushed it up to the top....they couldn't believe when I called and told them. LOL!! I told them that was what was going on with MJ's incision too, but they had never heard of the body rejecting stitches....I have pulled 3 out of MJ's incision this past week already.
We are also going to start MJ on nebulizer treatments. She is really congested, and she gets wheezy when she needs to cough (every 5 to 10 minutes). So we are going to try nebulizer treatments. We did notice that we can give MJ caffeine (Pepsi) and it opens her airways up, so we are going to try the nebulizer to see what happens.
We are also going to have the doc look at MJ's back. It seems like the staph infection from the incision has taken over MJ's body....the lungs and now her back....she has tons of pimples (kind of, but swollen) all over her back that have opened up despite the tea tree oil...(that is how she knows it burns) and it looking worse. She is on Keflex, 250 mg qid (4x/day). I can't say that she is getting better and she started last Monday! Hmm!!! We will see what the doc says, if anything! MJ's regular pediatrician was po'd at us when she found out that MJ was getting a gtube, and turned around and walked away...cuz we didn't tell her. Her idea is to see MJ and then ask what "I" want to do! Last time we saw her I got upset and said, "Gee, you're the doc getting paid, why don't you try and earn your money!!!".....so she called Dr. Bach to see if she should start MJ on an antibiotic since she had a fever of 102 and was coughing yellow mucus up....duh!!!! We hope we can get in to see the new doc, who actually had heard of SMA and was quite knowledgable...TTYL
Friday, January 10, 2003 at 12:24 AM (CST)
Hi all:
Margaret P (Dec. 2001) had a fair birthday. Thanks to everyone who sent cards and gifts. She had over 100 ecards or notes sent, so she was busy for awhile. She spent the day in bed, sick again with a staph infection. Unfortunately, it has settled in her lungs, so she isn't feeling well at all. Her oxygen levels are lower than normal and we are spending lots of time coughing. Please keep her in your prayers that this will pass quickly. She has only been in school 1 full day and 3 half days since school started back up.
Tuesday, January 7, 2003 at 12:23 AM (CST)
MJ is running a fever now...101. She is coughing more and feeling misearable. She will be staying home from school tomorrow...and it's her birthday. Major bummer!! Not sure what is going on, but probably from the infection in the incision. Good thing she is on antibiotics already. We hope this passes quickly so she doesn't miss too much school this time.
Monday, January 6, 2003 at 12:21 AM (CST)
Hi all:
We are back from Dr. Bethel. MJ does have an infection in her incision. He did a culture but put MJ on Kelfex (?spelling) since MJ has a tendency to get staph infection. We also started her on Nystantin right away to try and help prevent the yeast infection that usually follows. Dr. Bethel was impressed at how clean it looked despite the infection.
Friday, January 3, 2003 at 01:47 AM (EST)
Hi all:
MJ started back to school yesterday and lasted all day. She did great. Today, they actually had school, despite the ice. We went in but 2/3 of the school was out, so at lunch time we went home.
We are going to see Dr. Bethel Monday. MJ has had 4 areas on her incision that have opened up. It looks like her body is rejecting the dissolvable stitches and opening up to get them out. It is oozing and looks like more are trying to open up. They told us to wash with soap and water and keep them covered till Monday.
Other than that, all is well. In three weeks, the school year will be half over (gee, how time flies)....We are hoping for a good second half of the year. TTYL.
Thursday, December 26, 2002 at 10:23 AM (CST)
Hi (this is MJ):
I hope you all had a joyus Christmas! Happy Kwanzaa to those of you who celebrate. I got some wonderful gifts!Let's see...(to me) My most special gift was a small baby doll with wings. It is called "Summer Angel" by Lee Middleton. I named him Devon. I also got, a Helen Kish doll (I named her Annabell, but call her Annie) dressed in a red cowgirloutfit. Umm, I also got stickers, shirts, (the DVD) Oceans 11, & some socks. Grandma June gave me $50.00! I can't type everything Dad gave me!
We have ALOT of snow! Everything is white and beautiful! Again I hope your holidays were wonderful! Love, MJ
Monday, December 23, 2002 at 02:33 PM (CST)
Forgot to update about MJ before vacation. I'm on vacation and MJ is home for the holidays. It is the first time she will be spending Christmas at home.
She is doing great with the feedings. She gets two packs of Tolerex a day mixed with acidophilus and glutamine. That is all we have added to it so far. Her energy level is coming back up.
Her doctors appt went great. She was given the all clear to go back to school in January. Her incision looks great and is healing wonderfully.
MJ's grandma from Ohio is staying with her while dad works. I'm sure they are having lots of fun!
Have a joyous holiday season and a wonderful new year.
Monday, December 16, 2002 at 12:08 PM (EST)
MJ (Margaret) is doing pretty well. Feedings with the GTube are going
great. MJ is still fighting the yeast infection in her lungs, mouth, throat,
and skin. Her skin is almost cleared up, but she is still running a
low-grade fever and coughing alot. The medicine (Nystatin) makes her choke
more because it coats her throat. She is sleeping much better and only drops
her oxygen level a few times a night and only for a few seconds, not long
periods of time like before. Well, just thought I'd update you. Hopefully,
MJ will start feeling better before Christmas and enjoy her holiday season.
Tuesday, December 10, 2002
Hi all: So we are home. We got home yesterday around 6pm. To recap our week: Thursday: Left home at 8am and got 5 miles from the hospital before the weather got bad. The last 5 miles took almost 2 hours....due to ice, snow, and people who can't drive!!!! We arrived at the hospital at 11am, just in time to miss the scheduled Upper GI test. Our room in PICU was taken due to trauma cases so MJ was admitted onto the SICU floor. That was traumatic for everyone, nurses included. MJ didn't really like the atmosphere and the nurses weren't sure what to do with a verbal, moving, young patient!!!! LOL!!! Anyway, we had the upper GI at 2pm....only 1 episode of reflux at the end of the test, no hiatal hernia, but it showed esophageal regurgitation (as she swallows, the food goes up and down in her esophagus before hitting her stomach). Pediatric surgery residents had to come down to start the IV that night (at midnight). Friday: Surgery was moved back to 2pm. MJ got a "Santi Bath" before surgery!! What an experience. Her nurse, Santi, gives bed baths a new meaning!!! Because mattresses in SICU and MJ's are waterproof, he uses the suction machine and water to give a bed bath, shampoo included!!!! Dump the water on MJ and suction it up!!!! LOL!!!! We just got done with a Santi Bath when the called for MJ at 11:30. MJ and I went in at 11:45am and they started the peg procedure at noon. It was hard on MJ. The tube was fairly large, she hated how they inserted it, the throat spray made her not swallow her saliva, and they couldn't find the needle to connect the peg to the outside! After an hour, and lots of versed, Dr. Bethel made the decision to intubate and do an open gastrostomy. After almost 2 hours, they were done and MJ was extubated right on the OR table. Because no beds were available, she was readmitted to SICU. She was started on a morphine PCA pump. She looked horrible after surgery, because they did a blind intubation and she got a bloody nose, that drained out her mouth. Anytime she coughed, it was all bloody! YUCK! That night, she did eat a few ice chips and a couple sips of apple juice. We could not use the nasal mask because we couldn't vent the tube yet, so her sats were all over the place. Her heart rate was all over too, usually 130 and above. Saturday: MJ was very sleepy and lethargic and wasn't holding her sats well. The discontinued the continuous morphine pump around noon to a just as needed morphine. Right after that, and a few more ice chips, MJ threw up all the apple juice from the day before. She was given an IV dose of reglan, and given another santi bath!!! Pain wise, she was doing good. The amount of blood coughed up lessened and was dried up. Laura Landre came to visit around 8pm and Tim went to the waiting room to visit and watch her kids. While Laura was there, the orders came through for transfer. At 11pm, they were finally ready to move up to PICU. Once we got there, her IV infaltrated and they had to start a new one. GRRR!! We had a great nurse from neonatal start it and she did great. Finally got to sleep around 1am. Sunday: Woke up and wanted to flush the GTube, because while being vented, the tube collected bile and stomach acids, but were told that they gave orders for the tube to be clamped. MJ was to "eat" orally all day and on a liquid diet! Well, surprise to us. MJ did get some juice down, ice chips, and italian ice, and sherbert ice cream.....That night they wouldn't let us drain to vent so we rigged up the syringe venting tube to let her breath!!! MJ slept pretty good. We decided not to get the phone because we assumed that we would be out Monday. Monday: Bethel's resident came in and was upset that MJ was clamped the day before and asked why!! Duh, it was someone from your team, not our decision. At 5pm, they finally found something to do a feed with so MJ got 2oz of tolerex twice that evening. She also at a 1/4 of a pancake, 2 bites of grits, drank a tad of tea, and some apple juice. She is still on her IV and morphine as needed, but hasn't needed any since early Sunday morning. Helen started working on discharge equipment, but insurance problems delayed our discharge. MJ has thrush in her mouth and a yeast infection under her arms, on her back and legs. Started on nystatin. Tuesday: Totally nonproductive day. No doc came because they discharged MJ yesterday, but no one informed us. Nurse came in at noon and asked when we were leaving, they were waiting for us to say we were ready to go home. Helen came back up and it was decided we would quick get things set up so we could come home. Finally, with Lou's help, we were discharged officially, at 4:45pm. We made it home by 6pm. MJ was glad to see Wyatt. Wednesday: MJ had a rough night. After we got home last night, MJ started coughing a lot (actually she coughed whenever she at yesterday). She coughed all night. This morning, her phelgm, was white frothy stuff, so she has yeast in her lungs again! :o( MJ wouldn't use the tylenol with codeine at all and is doing great. She was running a low temp tonite and is desatting some, but after all the coughing we did, it is not surprising. Oh, regarding the gtube.....we used it some yesterday....she got about 12 oz through gtube during 4 bolus feedings. Today we did a slow drip, of 20 oz through the afternoon....once we started that, her coughing lessened and she was able to eat half a baked potato. We are going to do a slow drip again tomorrow and work up to 2 packs a day. MJ loves being able to do stuff and eat at the same time. Well, I think that is it for now. TTYL. Thanks again for all your prayers.
Wednesday, December 04, 2002 at 05:51 PM (CST)
Hey Everyone:
Well this will be my final e-mail for awhile. I'm being admitted to the hospital tomorrow. Dad, Brenda, & I packed and ready to go to the hospital. it's supposed to snow tomorrow! Icky!! I can't imagine what my life will be like after my g-tube is in! Anyway, please think about me tomorrow and Friday.
Huggles,
MJ (Margaret)
Tuesday, December 03, 2002 at 10:38 AM (CST)
Hello all:
Well, I heard from Emily this morning. UGH!!! There was some major scheduling conflict so we will NOT be going to the hospital tomorrow. We are going Thursday now, and surgery will be Friday. Of course, it is supposed to snow Thursday!!!!
Anyway, we have to check in at 9am and MJ will have an upper GI at 11am. We will be checking into PICU right away, since the regular peds floor can not handle a vent patient....oh well, it is better for us this way. Unfortunately, MJ can not eat anything before the test. I did convince them that she does need to have something, so we agreed that at 6am, I can give MJ a glass of juice so she has something in her system. After the upper GI, she will have blood work and get an IV, but nothing major. Surgery will be Friday. MJ was very upset as she was all ready for it to be Thursday. We were talking about it being God's plan and Thursday was just not HER day. At least it is only 1 more day. We can handle it!!!! Take care and TTYL.
Thursday, November 21, 2002 at 11:48 PM (CST)
Hi all:
Just thought I'd update you all. MJ is scheduled to be admitted to UMDNJ in Newark, NJ, on December 4th. She will have her Upper GI done, blood work, and an IV started. If the radiologist is there and available, MJ will have surgery on the 5th. Dr. Bethel believes he can just place a Gtube without the Nissan, but we won't know until after the Upper GI results are back. They don't believe she had/has a hiatal hernia, so they aren't concerned...but they will find out after the test!!! They are hoping to do the PEG procedure, which only takes 20 to 30 minutes with no incision made. They are going to prepare to do it either way if they can't get the endoscope down her mouth/throat. So, we have no idea what type of GTube placement she will have or even what type of surgery we will have until we get there and the morning of! Thanks for all the prayers for MJ. She is patiently waiting and trying not to get too scared and bored. Thanks.
And: our latest adventure!!!!Hi all:
Well, if you know anything about MJ and I, you know that life is never
dull around here. Well, we proved that tonite!!! Tonite, MJ was online
talking and we heard a pop and all went dark. It was about 9:00pm. Well,
the transformer at the end of the street blew, so we were dark. We don't
have a generator, so it was interesting. Con Ed couldn't predict how long so
we made a hotel reservation around the corner from us (Hilton). As we were
loading into the van at 10:30pm, the lights came back on, but we called the
Hilton and they said they would charge us no matter if we came or not....so
MJ and I decided what the heck, we were already packed, so we headed over.
Got there and got the van unloaded and Tim went to check us in while I
parked. As I got back to the enterance, Tim was coming out... the
reservations dept lied....the room they reserved was a smoking room and not
accessible. Tim was not a happy camper....so anyway, I went back and got the
van and we loaded up and came home. Poor Wyatt was really confused!!!
Anyway, we are now at home! Just thought you would love that story.
Monday, November 18, 2002 at 11:50 PM (CST)
Hello all:
Today MJ went to see Dr. Bethel. She did all the talking and did great. Bethel is talking about doing the PEG procedure with MJ since she is old enough. He doesn't do it in babies since their airways are so tiny.
Bethel is going to have Emily schedule the surgery as soon as possible (arranging that Bach, Bethel, the radiologist, the anesthesiologist, and a PICU bed are all available). Unfortunately, he doesn't believe this will happen until after Thanksgiving. He also doesn't want MJ there over the holiday. So, that is in the works. MJ told him she wants an Eeyore bandaid and she wants to take 2 things with her and he said fine. She teased him when he commented that he didn't know if he could do Eeyore. She said, "I know you have done Pooh, and if you can do Pooh, you can do Eeyore!"
I'll let you know what I hear from Emily tomorrow. More waiting for us, but we will do ok.
Wednesday, November 13, 2002 at 11:31 PM (CST)
Hi all:
Dr. Bach was good today. Had a long talk about MJ's breathing problems.
We talked about 2 different scenarios. It was agreed that MJ does need a
gtube to correct the problem. The difference will be in what Dr. Bethel sees
on the CAT scan. If the hiatal hernia is ok, then MJ will just get a gtube
under local....but if the hernia needs to be fixed, then MJ will get a gtube,
hernia repair, and a nissan all at the same time since they would be in there
to begin with, so do all three at once. Dr. Bethel is going to review the
films Friday and hopefully, we will get a call Friday. We do have an appt.
Monday at 2pm to see him to schedule the surgery and what surgery she will be
having. MJ's pulmonary function tests were down alot and we think it is from
all of these problems. He was shocked at how far down she went. Her vital
capacity with air stacking last year was 2.2L and it was only 1.5L today.
Not good. Even her peak cough was way down. He looked at me and said stack
more.....I said if we stack anymore, MJ is gonna pass out from
hyperventilating!!!! LOL!!!!
Tuesday, November 12, 2002 at 10:57 PM (CST)
Hi all:
Margaret's appt. was cancelled/postponed today. They called at 12:30 to
tell us not to come. Dr. Bahtcharya doesn't do surgeries, only Bethel does.
They never called back last week to tell us what Bethel said....but anyway.
We had mentioned that MJ was diagnosed with a hiatal hernia based on a CAT
scan six years ago. They called and said they needed the CAT scan before
they can do the surgery, so don't come. ARGH!!!! So, after calling around,
we were able to find the copies. Tomorrow when we go see Bach, we will drop
the CAT scan off, so Bethel can look at them on Friday and let us know what
he thinks. If it isn't a major problem, he will do the GTube otherwise they
will have to fix it first.
Anyway, MJ WON'T be having surgery this week. We are all really
frustrated right now, especially Margaret!! I will be calling everyday until
we hear an answer so we can get this scheduled! So now we wait! Hopefully,
we will hear from Bethel on Friday and get this surgery scheduled. We will
let you know what Bach says tomorrow. Talk to you later....sorry it took so
long to update.
Thursday, November 07, 2002 at 11:11 PM (CST)
Hi all:
Sorry no updates, but we haven't had a phone for almost 2 days...except for 2 hrs yesterday. We now have a phone, thank goodness!!!! I was suffering from CW (computer withdrawl) and having shakes and tremors!!!! LOL Thanks goodness for cell phones.
Got ahold of Bethel's associate yesterday. Bethel will be on vacation all next week....geez, vacation at this time of the year....what is he.....nuts???? So...anyway, they decided they want to see MJ first (the 18th) and then schedule after that. GRRRRRRRRRRRRRRR!!!!!!
Anyway, last night, August brought over a BiPAP Synchrony to try, along with our very own cute little oximeter. It is handheld size and very portable. They also wanted to do a night time capnograph/oxygen study so brought that monitor over. It didn't go well at all!!!! MJ lasted 30 min on BiPAP...all air went in her stomach as soon as she layed down no matter what the pressure was. They only brought a capnograph for the BiPAP mask, so MJ's CO2 wasn't studied at all. Her oxygen was up and down all night. The monitor drove us crazy though....first of all, the screen was so bright it lit up the whole room....then August set the monitor for 90 and it beeped every couple minutes.....so I turned off the volume but it still beeped everytime MJ dropped....so I ended up setting low oxygen level to 80 so we could actually get some sleep.....Otherwise we would have been up all night. Right now we are just waiting. MJ's grandma from Ohio is flying out Wednesday to be here for MJ's surgery...whenever that is. We will update more later. TTYL. Hugs to all.
Monday, November 04, 2002 at 11:36 PM (CST)
Hello:
Well, the doctors and respiratory therapists finally have a solution to Margaret's breathing problems. It sounds strange but we know it will work.
Margaret is going to be having surgery as soon as we can get it scheduled. She is going to be getting a Gtube placed. Sounds strange to get a Gtube to help with breathing but it is true. When we use a nasal mask at night, most of the air goes into MJ's belly and some into her lungs....so with a GTube, we can vent that air right out so she will be comfortable. The added benefit is that she will be able to get her special drink through the tube, because if you ask her, it tastes nasty (I've never tasted it, but it does smell bad).
We are hoping to get it scheduled for next Thursday or Friday. She will be having it done at UMDNJ in Newark, NJ. I'll let you know the date, address and phone number when we get things set up. Please continue to pray for MJ.
Thanks also for all the cards and emails. They sure are lifting her spirits. She probably won't be back in school until the end of this month or beginning of December. She is getting bored but has been having fun lately making her new website. Please sign her guestbook if you have time, she really loves to read the notes. Her new website is: http://www.our-sma-angels.com/Margaret/
She keeps updating it, so check back often!!!!
Thanks again.
Sunday, October 27, 2002 at 12:26 AM (CDT)
Sorry I didn't write last night. The computer wouldn't let me sign on at all, so I went to bed. What a concept, hmmm! Anyway, yesterday, Millenium came again to switch MJ to pressure support so her vent was more like a BiPAP instead of a vent. After a few minor problems, we got it all set up....and found out that pressure support won't work during the day, so we had to bring in her chair vent for day use and the bed vent for night use.
Bedtime: hooked up to nasal pillows with pressure support. She was working really hard and trying her best but once she fell asleep, it started going into her lungs. I adjusted the pressure from 25 to 30 as planned, but that made it even worse. AFter 15 min. she was gagging some and needed off. We readjusted and went back down to 20....but that didn't work at all. MJ was so upset, she started crying. She so wanted it to work and was so upset that she couldn't make it work. She was afraid that I would be mad at her. I felt horrible, but I laid with her without vent for a bit. When she felt a tad better she asked if she could have her computer, because she wanted to stay up all night since she would be tired anyway in the morning. UGH. I did convince her to sleep, but she was very restless. Her sats were up a bit since she was so restless, but never went above 95 all night. Did drop several times to 74. She was tired this morning, but not as bad as before since she didn't sleep well. UGH!!! Of course we slept in until 11. OOPS....I was supposed to call Millenium and let them know before 10am and get to the scout house before noon....yes I did make it to the scout house since it is time for magazine sales. Well tonite, we aren't doing anything special...just her regular lipseal. I'll call early Monday morning to find out what's next. Thanks for the offers for keychains. MJ loves all sorts of different ones. She even has a couple from Australia. TTYL.
Thursday, October 24, 2002 at 11:42 PM (CDT)
Tomorrow, Millenium is coming again. After talking to Dr. Bach, we are going to try pressure limiting instead of volume support. We hope this works. MJ is really tired of being tired. She wishes she could sleep and make it count. Right now her saturation level has been between 90 and 93....going down slowly. This isn't good. We hope tomorrow's changes work. We have an appt. to see Bach on the 13th of November.
Wednesday, October 23, 2002 at 11:59 PM (CDT)
Millenium was here for almost 2 hrs today adjusting the pressures. During the day time, MJ is down to 700 ml (2 weeks ago she was at 1300ml). At night we were to start at 600 and adjust as needed. So, I am camped out on MJ's floor and it isn't going well. We had to stop at 450, because the air kept going in her belly. I went to 400 but she didn't feel enough air was going in, so we switched to the lipseal. So that is going out her nose now. I will call tomorrow morning and let them know what happened. I'm not sure what is next, but we have to figure this out soon. Thanks for all your kind words. I was feeling down since we can't get this figured out yet. Bach's suggestion was to tape MJ's nose shut on lipseal....it still goes into her stomach, but she totally refused. (I'm mean, get real, who in their right mind would want their nose taped shut, oh yeah, with cotton balls stuffed in your nostrils).
Monday, October 21, 2002 at 11:00 PM (CDT)
Hi all:
Well, Margaret is home sick again. She is congested and coughing a lot, again! Looks like another cold. GRRR!!! She stayed down most of the day coughing. Her sats kept dropping this afternoon....she would be at 98 and drop into the 60's or 70's for a minute or two and then go back up. She did have another one of those episodes when her O2 hit 45%. I can't tell if she passes out or it is a seizure or something. I am calling Millenium in the morning to have someone come out. The nasal mask they sent, did not work at all. She did fine with it on while awake, but as soon as she fell asleep, ALL the air went into her stomach. After 10 min, she needed it off because her belly was bloated and hard as a rock. So she is using her lipseal again, which means most of the air from the vent goes in her mouth and out her nose....not much if any into her lungs. Well, time to go to bed.
Friday, October 18, 2002 at 10:48 PM (CDT)
Yesterdays update
OK, thought I'd update on MJ. Yesterday was a very interesting day. Her class had PLG day at the park. It is a group of seniors who help the freshman adjust to life in high school, led by 3 adults. It was supposed to be last week, but due to rain, was postponed. Anyway, MJ really didn't want to go but did, so we talked about it. She didn't want to go because she said the advisor didn't want her there. I told MJ it wasn't up to the advisor...if she wanted to go, we would go!!!!! So, anyway, yesterday morning we got up and called the school and asked if MJ could attend. They said yes. 10 min. later, the advisor called and hemmed and hawed around saying it wasn't fair to the seniors to allow MJ to attend because they hadn't met her and talked to her and they weren't prepared for her and blah, blah, blah!!!! I point blank asked her if she "was denying MJ's right to particiapte in the activity"....she actually said yes. So, I repeated it again, this time stressing DENYING!!! She caught my drift and said she would have to call me back. 20 min. later the principal called and said MJ could go. So we went, the advisor ignored us, but that was fine. MJ had fun and the peer senior leaders didn't have a problem with MJ being there. The principal dropped by and apologized for the mix-up, said he didn't know what HER problem was, but that it would NEVER happen again! So, that was yesterday. MJ hasn't laughed that hard in a long time.
Today's update :o(
This morning, Tim had to leave early, so when MJ's alarm went off, I went in to get MJ up....but she wouldn't wake up. I turned off her alarm and decided to skip shower and let her sleep a while longer. 45 min later, went in to wake her up and she wouldn't really wake up...moaned but that was about it...sat there, rubbing her arm and chest and finally after another 45 min, she started to wake up. She was sort of out of it, but wanted to go to school. So, we got up and she fell asleep while drinking her tolerex. Her stomach was really bloated again and she was just acting weird. At 8:30, we headed to school. She sat through Biology and wasn't really there....just spacey....I was concerned. Went to chorus and she was lost to begin with and not feeling well didn't help. She almost fell asleep in Spanish class but did ok....but said she wanted to go home. We came home and I fed her some lunch. The scariest thing happened today though....I told her we were going to lay down and rest and started to lean her back(in bed) and her eyes rolled back and were twitching as her oxygen level dropped. I rubbed her chest and kept talking, after 20 secs, she was ok....she cried....not sure what was happening. Said everything got dark.....her sats went up and was ok. Sats only went to 80 and went right back up. Not sure what that was. Called Millenium...they are overnighting a different mask for MJ to try tomorrow. We aren't sure if the "episode" was from low oxygen, low carbon dioxide, being tired, or a combo of them all. Who knows what is going on!!! MJ is pretty scared, she hates feeling floaty and not able to remember what is happening. We are going to work really hard this weekend and week at fixing whatever is going on. MJ said being sick with a cold would be much better than what she is feeling now. Just keep MJ in your prayers and hope whatever is going on will be fixed soon!! Thanks.
Monday, October 14, 2002 at 10:25 PM (CDT)
Friday update:
Hi all:
Well, everything is all set up. It was a long afternoon. August was here for about 3 hours. What we found out was very surprising though!!!! MJ doesn't have hypercapnia (high CO2), she has hypocapnia...or low CO2. Normal is 35 to 45 and MJ was at 25. MJ has been overventilated for years now, ever since PSA Kids Care set her up on her vent years ago! MJ's volume was 1300ml and we actually went way down to 900ml. She was actually breathing more normally. August left his CO2 monitor for the weekend, to keep an eye on her. At bed time, she was up to 33. Geez!!!! We were all surprised. They are going to try and get us our own monitor, since MJ's O2 never drops when her CO2 level is off.....Well, better go check her level and see where she is sitting at now. I have to keep checking her tonite. TTYL.
Sunday update:
It looks like MJ only has a problem when sitting up with her CO2 being low. Yesterday, she got up and we went out to eat. She had her vent, but while eating, she doesn't use it....so she breathes on her own....20 to 35 breaths per minute.....when she wanted to lay down, I hooked her up to the end tidal machine (which we can hook up inline her vent tube, or with oxygen-like tubing nasal cannula). When she was flat her CO2 was 33 to 35 but as we sat her up with the bed, it dropped to 18. Then came up with the use of her vent to 25 to 30. Hmm, August is coming today to pick it up so we will try to figure out what to do.
The machine August left costs $3,000. It measures CO2, O2, heart rate, and respiratory rate. Great little machine, but quite noisy!!! They are going to try and get one for us from insurance since it is a problem right now. I did a search on google.com and found the symptoms to be so close to high CO2. The scary thing is that all of them were what MJ has been having problems with the past couple weeks. Geez, last December, MJ was having too high of levels and a year later, too low. Geez, who knows now!!!
We weren't online yesterday as our phone was out all day. I was going into withdrawl I believe!!!! Hugs to all!!!!
Monday update:
Well, Margaret is doing ok. We just have to make sure she uses her vent all the time. She can breathe fine without her vent, but when she does, she hyperventilates and her CO2 drops. She is going to try to head to school tomorrow....we will see how she does. I'll let you know how tomorrow goes.
Wednesday, October 09, 2002 at 06:44 AM (CDT)
MJ is still home sick. The past few days she has been waking up in the morning feeling bloated and like she is going to throw up. We believe that since the air is going into her stomach, she is not able to get rid of the air and the carbon dioxide. Because she is feeling uncomfortable, she won't use her vent, so she gets headaches, has trouble concentrating, and gets lightheaded. We are keeping an eye on her to see what will happen next. Please keep her in your prayers.
Tuesday, October 01, 2002 at 02:00 PM (CDT)
Hello everyone:
MJ is still home sick. She seems to be developing another cold or something. She will go for periods all clear and then all of a sudden will have a runny nose and coughing and "phlegmy". Her tutor is here now. She was upset that it wasn't any of her favorite ones, but we shall see how he does. Hopefully, this cold or whatever won't hang on long, so she can get back to school. Today is the 14th day out. :o( Take care and ttyl.
Friday, September 27, 2002 at 12:51 PM (CDT)
Hello everyone:
Well, MJ has been home for 12 days of school. We finally did get most of her homework (due to the help of her guidance counselor and her aide getting back from florida). She is still running a temp though and is really tired all the time. A shower wears her out for the day. Hopefully, she can go back to school for part of the day next week. Well, time to end for the day. Thanks for everyone who keeps checking this out and signing her guestbook. Also, at the top of the page is a link to a new photo website with pictures from this summer.
Wednesday, September 25, 2002 at 10:15 AM (CDT)
Hi all:
MJ will be done with her antibiotic today, thank goodness. Now we will be able to see how bad the infection (yeast) is in her lungs. Hopefully, once she stops the antibiotic, the acidophilus will quickly clear it up. Two years ago, when this first happened, it was a mess.....the yeast, which was cultured as candida, caused a pneumonia, which caused more antiobiotics and the pneumonia was staph.
Right now, she is still running a temp....anywhere from 101 to almost 103. She ate a chocolote chip cookie the other day and it melted while it was sitting on top of her hand!
We are still having homework problems, but MJ's guidance counselor understands the problem. Monday, he brought over homework for 3 days (NOT) and spanish said to do the attached worksheets......well, you got it......there were no attached worksheets. English said to write a paper based on class discussion and board notes......what notes you might add.....he sent a note yesterday saying we wouldn't be able to do the paper without the notes....DUH!!! The guidance counselor at least understands the problem and how idiotic they are all being.
We are hoping that this runs its course now and that maybe, just maybe she will be back to school on Monday??? We hope so!!!
Thursday, September 19, 2002 at 06:59 AM (CDT)
Sorry we haven't updated in awhile, but it has been busy. Let's see. Summer in Ohio was great. We got to spend time with family and spent time with one of MJ's sma buddies (see picture page). The weather was really hot, so we did a lot of staying cool. This summer, MJ spent a lot of time making cards for kids with SMA and from Hugs and Hope. From July 1st until Sept. 1st, she sent out over 300 cards.
School started 4th of September. MJ is in 9th grade now in honors classes. She is enjoying it even though there is lots of homework. It does keep her busy.
Right now she is home sick with strep. Took us awhile to figure it out because her ear hurt, not her throat. She started on antibiotics on Monday. Yesterday she was still running a temp and her oxygen sats were down. We are keeping a close eye because she normally gets a secondary infection from the antibiotics. She has been out for a week now. There are a couple new pictures from Ohio on the photo page. I have been trying to get them all onto the yahoo photo page, but they haven't been going through. Take care.
Tuesday, July 30, 2002 at 07:49 AM (CDT)
Hi everyone:
MJ finally did get a new tire and we were at the lake by July 6th. We got home Sunday after a month of fun. We did make it to the beach a couple times but no swimming because MJ had a cold (which didn't go into her lungs). MJ and her cousin were busy making cards for kids during the month. We also spent a couple days at her friend Liz's house to escape the heat. We also saw 3 movies, went to the mall, visited places where MJ's mom hung out and went to the county fair. The chair has been great. It has so much more power and does so much better at the lakehouse. We are home now but will be leaving for Ohio on Thursday. MJ is excited and hopes to stay busy the whole time we are there.
Saturday, June 29, 2002 at 09:58 PM (CDT)
Hello everyone,
Today has been an eventful day. Not what we had planned at all. But first, let me back track a bit.... MJ got her new chair monday and wednesday it broke, the footplate fell off, so Thursday we went and got it fixed. they threaded the pulley strap wrong so the strap kept rubbing against a bolt! So, today we went to Walmart to get what we needed to go to the lake house tomorrow but......while we were looking in an aisle and heard a whooshing noise and I turned and looked and MJ's front tire was flat!! So, I went and asked if we could borrow an air pump and Walmart lent us one but we weren't able to pump it up so....Tim went and got the liquid sealer air pump that you squirt into the tube but the tube got lost and we couldn't find it.......so...... Tim went and asked to borrow a jack....but it wouldn't fit under the chair.......so........ Tim went and got phone numbers of towing places asking for them to bring a flat jack out to Walmart, but no one would because it was a chair so......... Tim made a lever with a barbell and a aluminum pipe and was able to lift the front wheel off the ground....but...... we needed an extra pair of hands!!!
so I jokingly said, lets call the army and tim said whatever, so I said, I'll be back!!!! There were two army reserve officers there and I saw them and went and asked if they could help us!!! They did....so I called the ARMY out to help; anyway....Walmart let us get tools to use...they got the chair elevated and got the tire ready to inflate and used the liquid sealer....but...when we put the chair down, the liquid stuff oozed out....the inner tube inside the tire had a huge hole and the stuff couldn't seal it.....so MJ had to drive her chair out of the store with a flat tire! We came home and called the vendor, but they can't come out and fix it till Monday! Grr! We were supposed to go tonite or tomorrow to the lake but now can't go till monday, hopefully! MJ is stuck in bed until then since they have her manual chair that is being fixed
It couldn't happen to anyone but us, right! It is always an adventure you know! we don't know, it was like the inner tube exploded or something. We were supposed to have airless wheels so we couldn't get a flat...but I guess we didn't get them! MJ was really upset by the whole thing...
When we got home we found out that the fireworks were tonite at the lake, so we missed them, hopefully we will find somewhere close to the lake that has fireworks. Well, that was long enough for now. I will let you know when we get fixed and ready to start our summer vacation.
Monday, June 24, 2002 at 07:18 AM (CDT)
Sorry no update, but I couldn't get on to update the past two days....But anyway, Thursday, MJ had her math final and triennial test from the school psychologist. They went well...verbally, MJ is on the 11th grade level!!! Friday we had her IEP and it went great. They were ready for us and agreed to what we said and even had their own suggestions. What a change from previous years. Saturday was haircut day but we didn't dye her hair blonde again...she is going to change the color for next year again!! Yesterday we went to visit Gilly, her little buddy in the hospital! Today is the big day...spanish state test in the morning, new wheelchair in the afternoon and dance tonite. Plus we found out that MJ's new therapy vest will be here today too!! Way to much going on!!! LOL!!!! We will get pics up soon of MJ's new dress and chair asap. I am updating the picture of Wyatt...and you can see MJ's loaner power chair. That is all for now. TTYL
Sunday, June 23, 2002 at 08:32 PM (CDT)
Sorry no update, but I couldn't get on to update the past two days....But anyway, Thursday, MJ had her math final and triennial test from the school psychologist. They went well...verbally, MJ is on the 11th grade level!!! Friday we had her IEP and it went great. They were ready for us and agreed to what we said and even had their own suggestions. What a change from previous years. Saturday was haircut day but we didn't dye her hair blonde again...she is going to change the color for next year again!! Today we went to visit Gilly, her little buddy in the hospital! Tomorrow is the big day...spanish state test in the morning, new wheelchair in the afternoon and dance tomorrow evening. Plus we found out that MJ's new therapy vest will be here tomorrow too!! Way to much going on!!! LOL!!!! We will get pics up soon of MJ's new dress and chair asap. I am updating the picture of Wyatt...and you can see MJ's loaner power chair. That is all for now. TTYL
Wednesday, June 19, 2002 at 07:58 PM (CDT)
Hello everyone:
Two more tests done and 2 more to go!! Math tomorrow and spanish on Monday. Friday is her IEP for next year and tour the high school to make sure it is ready! We found out today that MJ won't get her chair until Monday afternoon, after the test and before the 8th grade formal...so it will be a loooonnnngg day for MJ. Then Tuesday morning is graduation...I think she will need to sleep a few days to catch up after that!!!! She was very upset that she wouldn't get it tomorrow or Friday, but understands....just is hard to deal with! Not much else going on here....her dad is almost finished with her dress for graduation and the formal...I'll take pictures and post one when we get them back. Take care and ttyl!
Tuesday, June 11, 2002 at 08:08 PM (CDT)
Great news!!!! On Friday, we found out that MJ's chair wouldn't be shipped for 3 weeks and then after her dad yelled, they changed it to this Friday for shipment date. Well, we got a call today saying that the chair was shipped today!! Hmmm, sounds suspicious to me...don't ya think...From 3 weeks, to 1 weeks to 2 days...but anyway who cares. It will be in NY on Thursday or Friday and MJ will get her powerchair next week, in time for 8th grade formal and graduation!!!! She can't wait!!!! Only 2 more days left of class and then testing. TTYL
Friday, June 07, 2002 at 09:44 PM (CDT)
Hello all:
MJ and I are going to go visit a friend of MJ's tomorrow at UMDNJ. MJ is excited and made her a card and of course (you know MJ) has a gift for her!
We got an update on MJ's new powerchair that is on order. It was supposed to be here in NY today, but our vendor called Permobil and they said 3 more weeks....NOT GOOD! So, MJ's dad called Permobil and yelled. It will be shipped next week, so she will have her new chair for graduation!!! (The moral of the story...the loudest one gets the work done!!!!) LOL! She is doing pretty good on her loaner powerchair but it has it's problems. The battery doesn't hold a charge, so after a few zips down the hall, she loses speed quickly! Also, the seat back is too high so the solid back hits her neck which caused a major red dent in her neck (I fixed it at school with two pads and two coats). She can't wait for the new chair. She is also excited because she only has 4 days left of classes before finals begin! Well, that's all for now. TTYL.
Tuesday, June 04, 2002 at 08:13 PM (CDT)
Watch out everyone, MJ's is back in power. It took over 4 hrs to rig the chair for her but she is a maniac!!!! She can get that chair a moving! It looks a little strange but who cares! She can move!!!!!! She is very tired from the day but in a great mood. Plus, her father got back from Colorado and Wyoming (we had lots of fun with him gone, though) LOL!!!!
Well, I'm gonna go to bed and hopefully I won't have to share the bed tonite with Wyatt (he's a pig and likes to shove you off the bed)!! Take care and TTYL
Tuesday, May 28, 2002 at 10:42 PM (CDT)
Today MJ stayed home sick. She was up all night coughing and didn't fall asleep until 5:30 am. She ended up sleeping until after 11:00am but I woke her up. She was running a slight temp but did feel better. Her O2 sats were lower than normal, but still within the normal range.
We started the process to get the ABI Therapy Vest for MJ today. It is a vest that was primarily used for cystic fibrosis patients but is now used for SMA. We also found out that next Tuesday, June 4th, MJ is going to FINALLY get her loaner power chair. Then hopefully a week after that, her brand new power chair will be ready to go!!! Well that is all for today.
Friday, May 24, 2002 at 09:10 PM (CDT)
Sorry, for the long time between updates. MJ has had a pretty healthy month. We found out the her power chair was approved and ordered. Next week (keep your fingers crossed) she will get a loaner power chair and then after the 10th of June, she will get her brand new power chair!!!!! She can't wait. Last weekend, we went to a conference in New Jersey, done by Dr. Bach. MJ did a service project for girl scouts and gave each kid a beanie bundle. She is doing a scrapbook with the pictures she took and we will put it online when we get it done. She also had a vocal concert Wednesday and afterwards, she lost her voice. No school today, extra snow day, so we went shopping. Tomorrow, she is going to see Lion King in NYC. Well, that's all for now. I will try to update when she gets her loaner power chair.
Sunday, April 14, 2002 at 08:27 PM (CDT)
Hi all:
MJ had a good 3 days off from school. She slept in, caught up in her homework, went shopping, and played the Sims Vacation a lot. Forgot to tell you earlier, when we were on vacation, MJ got her report card. She got 6 A+'s and 1 A. The A was in science. She missed 26 days this past trimester so is now up to 41 days out. Based on her grades, MJ was put into honors classes for next year as a 9th grader. She will be in 10th grade Math and 10th grade Spanish. Today, MJ made a simple quilt for Hugs and Hope for their fundraiser. Her grandmother bought fabric for MJ to make 4 quilts for them. One down, 3 to go!!!! Well, that's for all. For the new pics, check out the yahoo photos at the bottom of the page.
Tuesday, April 09, 2002 at 07:18 AM (CDT)
Hi everyone:
It is never a dull moment around here, that is for sure. Margaret is finally back at school after being sick for about 3 weeks. We did travel to Ohio for spring break even though she wasn't feeling well, mostly for a change of scenery. Our dog, Wyatt went with and did really well traveling, once he knew we weren't going to leave him somewhere. Margaret won overall at the science fair, so on April 27th, she goes to the tri-county science fair. She did her project on Tolerex, the amino acid formula she drinks. Yesterday was the first day back to school full time, but during 6th period, her manual wheelchair broke. So, we drove over the bridge to get it fixed...luckily, they were able to fix it temporarily until the new part comes in. Margaret is also taking off from school the next three days while her class goes to Washington DC. She is going to stay at home, sleep, play on the computer (she got the new Sims Vacation game) and catch up on homework from being sick! That's all for now. Have a great week.
Wednesday February 20, 2002 9:33 PM CST
Hi all:
It is vacation week and we have been busy. Saturday we went shopping with Margaret's grandmother, Sunday we went shopping at the Crystal Mall and stayed overnight in Groton, CT. Monday we drove to Rhode Island to get a dog. Today we hung out and played with Wyatt, MJ showed her dad the Sims game (and is eagerly awaiting the release of the new Sims pack), and watched the Olympics. Check out the picture page to see Wyatt...the new member of our family.
Tuesday January 22, 2002 8:46 PM CST
Sorry it has been so long. MJ has been busy. She is in 8th grade and doing well. Her first trimester went by and she only missed 15 days of school. Her powerchair died and was sent away in September and we don't have it back yet. We got a loaner chair and that too is out of comission. MJ turned 14 a couple weeks ago and this past weekend had a coed party and loved it. She is still home sick...day 7 now...just can't get her lungs clear. Will try to update more regularly.
Friday, May 25, 2001 at 09:26 PM (CDT)
MJ has been home sick this week with pneumonia. She is actually getting better quickly this time. We didn't do antibiotics but did the Block technique, which seemed to really help. Between the Block technique, CPT, and the In-Exsufflator every 10 minutes, we were able to manage this pneumonia quickly. We were almost ready to call the doc Wednesday night, but she is doing pretty well tonite. MJ did miss the class trip to Boston on Tuesday, but looking back, she was glad she missed it....it rained all day in Boston and it was a lot of outdoor stuff....not good for the power chair. MJ loves the LTV vent. We tried it at night last weekend, before we travel with it and now she uses it at night and on her chair. She likes it so much better than the LP10 vent. So, we move the LTV from chair to bedside and back...but at least it is lightweight!!! We just found out that MJ's manual chair is FINALLY almost done. Now we can get her power chair fixed, plus they recalled a part on her power chair. If anyone has an Invacare Power chair made in the past 2 years, call your dealer!!!!! Well, that is enough for now.
Sunday, January 14, 2001 at 09:03 AM (CST)
Hi all: MJ celebrated her 13th birthday on Monday and was very excited. We decorated her chair with balloons, star garland, and beads. She was quite colorful! MJ is doing pretty good. She had a good birthday and is having her friends party on the 20th. She was sick on Tuesday (good thing she was healthy for her birthday though). She almost went into respiratory arrest due to a huge mucus plug. I brought her home early from school on Tuesday and by the time we got home, she couldn't get air in her lungs and was quickly turning blue. Thankfully we were at home and the combination of the ambu-bag, assisted coughing, and in-exsufflator got out the plugs. She slept most of that day and the next. MJ went back to school Friday for crazy hair day with purple and orange hair!! We will post pictures of the hair when we get them back!!
Thursday, December 21, 2000 at 10:43 PM (CST)
Well, MJ is finally starting to do better. We are leaving for vacation tomorrow. Pack, pack, pack!!! MJ went in to school today to do a class project and to collect the money from her fundraiser. She was hoping that the school would raise $130 and was pleasantly surprised (since 75% of the kids are low-income). I just finished counting the change that they collected and it was $338.37 The kids got really scared after MJ got sick and started putting more and more change in. One of the teams (100 kids) collected their own money and out of the $338, they collected $104 of it! MJ was so very happy and pleased. So, our van is partially packed, all but the machines and we are ready to go! MJ and I probably won't be online much since MJ will be in Ohio babysitting cousins, and I will be in Iowa(hoping it is warmer than it has been).
Monday, December 18, 2000 at 08:10 AM (CST)
Boy, it sure has been a long time since we wrote on here. Things have been hectic, to say the least. MJ's computer screen was fixed right away, but we think something else was wrong because it isn't working now. Over the past month, programs have quit working and disappearing. So, now we have to get it worked on again.
MJ did her presentation on Dec. 4th at her school to 1000 kids to help to raise money for SMA. The school is collecting money and it is going pretty well.
Right after her presentation, MJ got a cold. She did well for the first week, but by last Saturday, she had a bad cold and pneumonia by Tuesday. She is doing ok, on oral antibiotics and holding her own at home. She missed school all last week and she will probably stay home all week to be healthy for vacation (except will go in Wednesday afternoon to do a project in one class).
MJ also got her report card last week. In Enrichment Math, Language Arts, Honors Math, Spanish, and Science, she got all A+'s and in Social Studies she got an A. She was excited, but disappointed about the A. LOL!!
Friday, we are driving to Ohio for vacation. We are hoping MJ will be healthy enough to enjoy her time with her grandma and aunts, uncles, and cousins. On Sunday, I, Brenda, will be flying home to Iowa to see my family. Hopefully we will have good weather for driving and for me to fly home.
Hopefully, it won't be as long before another update. Happy Holidays!
Tuesday, November 14, 2000 at 08:43 PM (CST)
Well, what a day we had....MJ wishes it never happened..... During class this afternoon, she went to turn in a paper to the teacher and as she started driving up, her computer did a flip off her tray and hit the floor....and cracked! :O( The computer works, but the screen is shot! After I turned it in, MJ was crying....as the computer flipped over, it hit her foot. I took off her splint and sock and her foot was swollen and bright red. Thank goodness it wasn't broken (after 2 hours at the doctor) she just has a bone bruise.
MJ got final approval at school to do a fundraiser. She made a power point presentation that lasts 4 min. She is going to present it to her whole school (about 1000 kids). We aren't sure what date yet...they want to do it the 21st of December, but we are trying to change it to earlier. It won't be in time for the fundraiser in NYC (which is only 40 miles away from us) but it will be later which is still good.
Take care and ttyl.
Tuesday, October 31, 2000 at 05:21 PM (EST)
Hi everyone:
School is going good. I got my progress report and have 5 A's and 1 A+. Last week I was casted for new foot splints. I used to wear AFO's but am getting just short ankle splints now. I get them next Tuesday. Today I had a wheelchair appointment at Helen Hayes Hospital in the CRT department in West Haverstraw, NY. I see this wonderful guy named Dave. He is great and very funny! I have been having problems driving cuz my hand keeps falling off the joystick. Dave told me about this new joystick and let me try it out. It is like a touchpad on a computer. I was able to drive my wheelchair with my fingertip. It was so cool. I am also going to get a new seat cushion. Dave is so smart and helpful. If you need to get any medical equipment, you need to see Dave. He has helped me get my power wheelchair and also is helping me get a new manual wheelchair. Hopefully, I will get the new joystick touchpad and the new seat cushion pretty soon (hint, hint).
MJ
PS. If this is Dave reading this, you better sign my guestbook!!!!
Monday, October 02, 2000 at 08:39 PM (CDT)
Well, what a weekend we had!! We had a fun weekend in Vermont. We went to Ben and Jerry's and had a personal tour. MJ says it was like Willy Wonka's factory but Jerry was much nicer than Mr. Wonka!! MJ invited her friend Casey, and his family to join us and the two were the special guests for the day. We got a tour with Jerry (of Ben and Jerry's), got to go onto the floor while making ice cream (which they came in to do just for MJ and Casey), got fresh ice cream right off the line, and got tons of free gifts. Then we went to the Teddy Bear Factory and got a personal tour and MJ and Casey got a free bear of their own choosing. We ate Friday night with Casey's family at a restaurant, Cruisers. Saturday we ate at Aunt Chris's house, but didn't need lunch Saturday cuz of all the ice cream we ate!!! We ate breakfast before leaving Vermont yesterday with everyone again. Casey gave MJ two pumpkins he grew and they are wonderful!! We also stopped at the Yankee Candle Factory in Massachusetts on the way home. What a long weekend but very enjoyable!!
Monday, September 25, 2000 at 04:32 PM (CDT)
Hola (hello),
I'm sorry I haven't written in a while! School has been very very busy. Not much time for writing to friends and family.
Really there isn't much to tell. I got an A+ on my math test. On friday (comin' up) I'm going to VERMONT! :O) (O: I'll write more later!
Love,
MJ
Friday, September 22, 2000 at 10:14 PM (EDT)
Hi all: MJ is doing well so far this year. She is in advanced math and just started enriched math before school, which is all internet projects involving math. Next Friday, we are off to Vermont again. MJ was asked by a friend of ours, where she would go if she could go anywhere....she picked Vermont to Ben and Jerry's Ice Cream Factory. We have a personal tour set up for next Saturday. MJ asked so Casey and his family can go with us too. MJ is really excited to see her little buddy again!! We have been going to hotels lately to avoid bug sprays but after we check in they cancel the spraying, so it has been interesting here!! Check out the new pictures that are being added from our Wyoming trip!
Friday, September 08, 2000 at 11:32 PM (CDT)
Well, MJ started back to school on Wednesday. She is a big 7th grader. She has a good schedule, thanks to some wonderful teachers. She goes at 9 and can leave at 1:30 after 5 academic classes. She is taking advanced math and spanish (which she is loving and doing well) plus social studies, science, and english. Tonite she had been saying the spanish alphabet over and over again. She also is practicing her states and capitals for a test next week. Already lots of studying, but she loves it. MJ's teachers are great. She enjoys them all! She also has a new aide, who she enjoys. Her aide writes everything for her and it doing a good job. Well, that's all for now. Hopefully we will get pictures up soon. Have to scan them in. TTYL and sign the guestbook.
Tuesday, August 29, 2000 at 07:14 PM (CDT)
Hi Everyone;
I'm FINALLY home! Geez, there is sooooooooo much to share with all of you! I can hardly believe that it is August 29th already. In 1 week I'll be off to my first day of 7th grade!
Well, I should start from the beginning, right? No, I'll just tell you the best parts! I don't want to bore you! Ok....I think I'll go by state ok?
PA: The sausage gravey at the Restauran..(a truck stop restaurant w/ the t missing in it's sign).
OH: Babysitting for my lil' cousins Pete & Zach. Ages 6 & 7! Quite an adventure! Met David and Madison. And shopped till I dropped (literally).
IL: Don't know, didn't really do much!
IA: WOW, ok.....Riding the carousel (accessable), Seeing Brenda's mom, Going shopping.
NE: The Great Platte River Road Monumont....If you go to NE on I-80 you have to visit it!
WY: the o<|:O) (party) If you don't already know my Aunt Claudia turned 50! It was so cool. Almost all my family was there, some of them I haven't seen in sooo long!
Over all: Being with family and friends!
I guess that is all!
Love you all,
MJ
Sunday, July 30, 2000 at 06:33 AM (EDT)
Hi everyone:
We are leaving for vacation in a few hours. Unfortunately, we will not be taking the computer, so we will be offline for the whole month of August. MJ is excited to be going, but is upset that she can't take her computer.
Last night we had visitors for dinner from Vermont. Casey and his family stopped by on their way to their vacation. MJ loved seeing Casey again!! She gave Casey a big bag of goodies!!!
We will try to update the page if we can do it at the library in Ohio. We will be in OH a few days then driving to WY, which will take 5 days from OH (with a stop in IA to visit my mom). We will be in WY for 6 days before driving back to OH to stay a week there.
Hope everyone has a great month of August. TTYL and TTFN
Saturday, July 22, 2000 at 07:26 PM (CDT)
HEY Everyone:
What's up with everyone? Today, I went to "Kohl's". It was wonderful. I got new sheets. They are T-shirt sheets. They are 2 tye-dye in 2 colors, bright and sea! Then, I also got cloud T-shirt sheets. They are great! My dad did also buy me 2 t-shirts and a pair of shorts! Well, ttfn
*~*MJ*~*
Sunday, July 16, 2000 at 11:14 PM (CDT)
Hello again everyone:
Things are progressing quickly for our summer plans. MJ and I are driving across the US from NY to Wyoming in two weeks. What a long drive!! We are only driving 5 hrs a day for 7 days with breaks. We are driving to Ohio to get MJ's grandma and staying there a few days before leaving again. We are also staying an extra day in Iowa to visit my mom and homestate. Then off to Wyoming for 2 weeks. Lots of MJ's relatives will be there and her dad is flying in after we arrive for a week. Then driving back to NY in time to start school and maybe spend another week at the lake house. What a busy summer lined up. Tonite we made reservations for hotels along the way so we are all set!! We have already made lists and have started putting stuff in the van to prepare! Well, that's all for tonite. Hope you are all checking out the pictures we added from the lake. We will try to keep updating all summer on our trip, but forgive us if we miss a few days.
Sunday, July 16, 2000 at 05:23 PM (CDT)
Hi everyone; It's MJ! Yesterday, my dad, Brenda, and I went to Wal-Mart. It was great! We also went to Toys 'R' Us. That was fun! And, (here's the best part) WE WENT TO APPLEBEES!!!!!! I had chicken with cheese and peppers inside. On the side I had Bacon chedder, mashpotatos! Doesn't it sound WONDERFUL!?!?!?!? Today, I just rested and watched tv. Hey check out the picture part of my site..........I added new pictures....Well, I better go, Dinner time! TTYL
MJ:O)
Friday, July 14, 2000 at 23:29 PM (EDT)
Hi everyone; sorry we haven't written but have had a few busy days. Thursday we finally called insurance to ask about a new suction machine for MJ. While on vacation, we discovered that the suction machine batteries have no power left and then discovered that the model we have was discontinued. So, yesterday, insurance approved a new suction machine and delivered it right away. Last night, when we were doing MJ's IPV machine treatment. We just started the treatment and were reading the new Harry Potter book when MJ and I looked at each other and asked if we smelt smoke. We both did and looked up and saw smoke coming from the IPV machine. We quickly shut it off and stopped that. So, MJ went without her breathing treatment last night and this morning. We spent all day on the phone trying to get a different IPV machine and finally got one at 6:30pm tonite. They actually sent the machine with a used set of tubing that smells of smoke and is broken. I guess I will have to call and yell next week again. We were going to go to WalMart today, but never made it since we waited for delivery. So we are going tomorrow instead. We got pictures back so I will try to get those loaded on tomorrow!
Thursday, July 13, 2000 at 13:10 PM (EDT)
Hi everyone:
Yesterday we went to the movies with MJ's friend, Liz. We went to see "The Kid". It was very good. We had a good time. After the movie we went to Liz's house and MJ played THE SIMS. She loved it. She wants to get a new computer NOW so she can play the game!! We have the game but we don't have enough memory. Today we are relaxing and hanging out! TTYL.
Tue Jul 11 12:20:43 CST 2000
Hi all:
We had a quiet day yesterday. MJ was online catching up with her friends a lot yesterday. We did run out to drop off film to get it developed. Today we are getting our haircut. Tomorrow is off to the movies. MJ is excited to be able to hang out with her friend Liz tomorrow. Not much else is going on. TTYL.
Sun Jul 09 20:52:31 EST 2000
Well, we went to see Dr. Bach last Sunday...boy was it interesting. Seeing him in a casual setting was different. We went out to dinner with him and his son and also 3 other people. The restaurant was noisy so MJ couldn't hear what anyone else was saying unless we played telephone!! Nothing was decided except that Dr. Bach needs the tests results from the sleep studies they did! MJ was disappointed in that there was no answer yet, but is waiting. We spent 10 days at the lake house. MJ's cousin was there and they had a good time. They spent lots of time sewing for themselves and their dolls. Thursday, I took them to the movies (Rocky and Bullwinkle) with their dolls and they were wearing matching outfits. (When we get the pictures back, I will post them online!) We also got to see fireworks at the beach and MJ's friend came down Saturday to the beach with us. We didn't go to the beach everyday because it was too hard on me to drag MJ's beach chair through the sand, so we hung around the house! We got home today. This week we will get haircuts and take it easy. I think we are going up to Florida, NY to go to the movies with MJ's friend, Liz. Keep signing the guestbook. MJ sure loves to see your messages!
Sun Jul 9 21:07:44 CST 2000
Hi Everyone I just got back from the lake house. I had a wonderful time! My cousin, Sammy, and I had great fun together. We sold lemonade and made $10.16. It was great. Well, I better go. Brenda will write more later.
Sun Jul 9 20:47:19 CST 2000
Hi Everyone I just got home from the lake house. It was great! My cousin, Sammy, and I had great fun. We sold lemonade, and made $10.16. It was great. Brenda will write more later. Love, MJ
Thursday, June 29, 2000 at 09:43 AM (CDT)
Hi Everyone MJ here! I received a note from Dr. Bach. I will going to see him on Sunday. Yes, I said Sunday! I'm going to his house! Can you imagine? Me, Margaret Jo Purk, going to Dr. Bach's house. We will be discussing my trach. Finally! I'm a little scared, but I know it is what I need.
Anyway, That is all I have to say about that! Today I will be packing for the lake. I have all the most important stuff: Resse Pieces, Skiddels, Ranch goldfish, etc. etc.! All the good stuff! lollololololol :o) Well, I guess I should go! TTFN MJ
Wednesday, June 28, 2000 at 09:29 PM (CDT)
MJ apologizes for not writing today. She was very tired after waking up after sleeping without her vent! We had a pretty good day though. We went for a long walk outside since it was nice.
MJ got a lovely letter from people at Ben and Jerry's Ice Cream Factory in Vermont. Her friend, Fran, has arranged for us to take a trip to Vermont and tour Ben and Jerry's!
Tonite we met her dad and went out for dinner at Pizza 'N Brew Italian Restaurant, here in town. We then went and bought some sand toys for the beach for this weekend.
MJ isn't going to swim while we are there...as her back hurts when she swims and since she has been sick. We don't want her to get any lake water in her lungs and make her sicker. But she will be going down in her beach chair and play in the sand and sitting in the water.
Saturday, there is a parade and a carnival and fireworks in the evening at the beach. We are also invited to a Fourth of July party on Saturday too. Busy, busy. Sign the guestbook if you haven't. Thanks everyone!! TTYL
Wednesday, June 28, 2000 at 09:22 AM (CDT)
Hello everyone:
MJ had a pretty good night. She slept ok, with her usual oxygen up and downs. She has been sleeping for the past 2 hours without her vent with her oxygen sats lower than normal. She will be really lethargic when she wakes up, that is for sure!!
MJ's dad got her a new computer game yesterday and we spent all day trying to install it. We have no memory available for it. We dumped all the programs (her video camera, dad's digital camera, scanner, microscope) but still have no room. She is a tad upset that we can't get it to work! Hmmm, back to the drawing board.
MJ is tolerating the Ceftin better this time. They added grape flavoring drops and also grape juice to the medicine. It now has a lovely purple color. It smells quite nice too. Hopefully, this will clear her lungs up and she will be able to enjoy her summer more.
We are off to the lake house on Friday afternoon, so I'm not sure if we will update at all this weekend. If not, we will be back and MJ will tell all about it! Enjoy your day.
Wednesday, June 28, 2000 at 07:56 AM (CDT)
MJ had a pretty good night. She got woke up at 8:00am with the delivery of furniture for the dining room. She fell back asleep without her vent, so I am sitting and watching her oxygen sats go down. MJ got a new computer game from her dad yesterday, and is very upset. We spent all day yesterday trying to get more memory, but it still won't run. We had to take everything off the computer but still no use. MJ will be on later to write more once she wakes up. She doesn't seem to mind the Ceftin this time as much as last time. They put grape flavoring drops and also grape juice in it at the pharmacy...so it is a lovely shade of purple. It even smells better!! Keep signing the guest book.
Tuesday, June 27, 2000 at 05:50 PM (CDT)
Hi again! I just wanted to let everyone know that I am on a medicine. It is called Ceftin.....Nasty! At lest I get grape flavoring.....Well, I guess that is it.....Oh yeah.....Please sign my guestbook if you haven't already! Thanks I love you all! :o) MJ
Tuesday, June 27, 2000 at 11:50 AM (CDT)
Good morning or shall I say afternoon! Well let's see.....Today, I'm going to go out and send a present out to my goddaughter, Megan. Also, I'm going to watch some tv. Maybe, I will start packing for the lake house. I will be going there on friday. Anyway, I love reading your comments on my guestbook, so if you haven't singned it please do! Ttfn
MJ
Monday, June 26, 2000 at 11:03 PM (CDT)
Hello again:
After doing lots of searching we think MJ has Staphylococcus aureus and candida yeast infection. Interesting combination so can't wait to see what the doctor will prescribe. Don't forget if you check us out to sign the webpage for MJ. She loves reading your comments!! TTYL and TTFN
Monday, June 26, 2000 at 10:16 PM (CDT)
Sorry about the spelling of the infections MJ has. We aren't sure how to spell them. WE think one is staph aureus. The other one, we really don't know. If you sound it out, it sounds like can-u-dus. We will be getting the info tomorrow on how to treat these.
Monday, June 26, 2000 at 06:18 PM (CDT)
Well, let's see. We finally heard from the doctor! My culture tested for staphoria and canuda...sounds interesting, if you ask me....like euphoria and canada! Of course, they didn't know what to do about it, so I have to wait until tomorrow to find out the treatment course for it. Hmmm, more waiting. I also heard from my other doc, who wants to see the results from my sleep test before I can get a trach. Hopefully, this week we will have an answer! TTYL.
Monday, June 26, 2000 at 09:55 AM (CDT)
Hi Everyone,
It is MJ! Do you like this page? You can check out this page anytime to see what I'm up to! Well, this page is for me and you. I think that this page will help you know what I'm doing today. I will try to post everyday, so as to inform you. Well, I gotta eat breakfast soon.
Love,
MJ
Monday, June 26, 2000 at 08:13 AM (CDT)
We have been trying the PEEP valve on MJ all weekend but haven't seen a difference as of yet. We have a call into the doctor to find out what is the next step. We are also waiting to hear the results of the sputum culture. Will update more later.
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