Halloween Celebration at the hospital

Morgan was supposed to get a spinal tap for her spinal fluid pressure today, but by the time the doctor came and saw her, it was too late. Plus, they were worried that the chololate milk SIP that she had with her meds (that the nurse brought her) was risky with the anesthesia.  So, they didn't get it scheduled until Saturday morning. The good news was that they were doing trick or treating in the hospital and they brought Morgan a costume to use. She had these really cool wings and a black tierra. She also had wicked cool eyelashes, but they didn't stay on very long as they bothered her eyes. They went through several floors and the nurses handed out candy and toys and all kinds of stuff.  The Shrek costumes were the best!

Morgan wasn't feeling too great during the day, but she did smile several times (especially for the camera). She is really getting tired of these headaches. :(

I continue to be amazed at All Children's Hospital. They really do a great job of caring for the patients and of trying to add some fun where they can. The trick or treating was fabulous.  They even had a pet parade.

In Atlanta For Training

This week, I was in Atlanta Monday night through Thursday for a training class. On the way out, I stopped into the Delta Sky Club (LOVE the sky club). The Tampa club has gone self serve! Even though I didn't have anything other than water and some snacks, it was pretty cool to see the setup.

 It was good to be there and to get to socialize with some other people who I don't normally get to be around. The class was good, but it is SO hard for me to sit still in a class for three days. Plus, they have all of this catered food that is so hard to not eat when you are sitting in a class all day. Plus, I had gone about 10 days without a diet coke or diet pepsi (love that Pepsi after the refresh grant), and I didn't survive the meeting. I had at least one every day. I needed the caffeine and my head was STILL hurting. I thought the caffeine headache would go away after 10 days, but it didn't.

I did run on Tuesday and Thursday, but my Thursday run was only 6 miles (planned to do 8).

I tried really hard to get an earlier flight home on Thursday as we finished the class a little early. Morgan was getting admitted for her infusion and for a spinal tap. I would land after the IV was started, but I knew Mike would do a great job geting her admitted. I did hate to not be there though, so I tried really hard. I went standby on two flighs, and it looked like I would get on the 2nd one. But, then I didn't. I was sad, but it was only an hour before the next flight.

I got to the hospital around 9:45. Mike went home to get some sleep and I stayed with Morgan. She was still having a bad headache, but they gave her benedryl and pain meds. She slept pretty well. I have a love/hate relationship with the parent "bed" at the hospital. I am thankful they have it as the lounge chairs aren't really sleeping material to me, but it got really old the last time she was in the hospital.

Morgan's First Horse Show

Today, we got up at the crack of dawn to take Morgan to her very first horse show. She has recently started riding lessons again (been a long time since she stopped to do tumbling/cheerleading). She went to one lesson and then had to miss three weeks. When she came back, it was 4 days before the show. They asked her if she wanted to do it, and she said she did although I think she was pretty nervous about it.

We got there on time, and they got Chance ready for the show. She got to warm up and then they started the show. They had to walk and stay close to the rails, and then they had to trot and post correctly. Morgan had a little trouble getting her post correct and her horse didn't want to stay close to the fence at one point. Otherwise, she did awesome!!!! Then, they went to the center of the ring and she got 2nd place. Then, they did it again and walked and trotted. She had MUCH more conrol over Chance this time, and she got 1st!!! She was so excited. She was 2nd overall, so she took home three big ribbons! She wasn't feeling well though so we went straight home and she went straight to bed. :( At least she got out for a while and got to have some fun.

Run, Shopping, Howl O Scream!

WOW...so much for restful this weekend. :) Today, I went for an 11 mile run to hit my long run of the week in preparation for Jacksonville. Then, I took Morgan shopping to find pants and half chaps and a polo shirt for her first ever horse show tomorrow. :) She started back to hoseback about a month ago with one lesson, and then she was so sick that she had to miss three in a row. Well, at her lesson last week, they asked if she wanted to be in the show. She hasn't ever done that and wasn't sure about it. She really wanted to do it, and I was so glad she decided to go. But, we had to get some supplies.

First, we went to to the "horse store" as I call it. The polos weren't good for Morgan, but the rest was good. Then, we went to Walmart to get a polo. As we get out of the car, we realize that Morgan left her flip flops at the "horse store." Oh my...we laughed so hard. So, she went into Walmart with black boots and jean shorts. Oh yeah...Mike said that she might have been photographed for that "people of walmart" joke. :) We went back to the horse store and thankfully had no problems getting the shoes.

By now, it is time to get ready to leave for Howl O Scream - Busch Gardens haunted houses. The whole fam went and Morgan's friend Rachel joined in. We went to Fright Feast to watch the show and eat before hand. This is a great idea because you get a good meal, a funny show, and then you get into the part a half hour prior to the park opening. Then, your wristband gives you "Front of the line" access for an hour after that. You can see a lot in an hour an a half.  We saw all the houses and scares zones, and we rode montu, shiekra (twice), and kumba. Fun night! Of course, Mike may never walk normally again after having the girls holding onto him so tightly, and we might not be able to hear from all of the screaming. But, we had a great time.

Mike also won me an adorable Tennessee bear at the basketball game area!!! Day 6 of no Diet Coke/Pepsi. WOO HOO!

TGIF!

I was so happy for Friday to be here. Hip Hip Hooray! My stress level has been pretty high lately, and I was really excited to have a weekend that wasn't planned from minute to minute. This morning, a reporter came to the house to do an interview about our fundraising for Cure JM (http://www.firstgiving.com/curejmformorgan). It was so interesting to see them set up the lights and such.  I so hope that a story can help others get the awareness that will help people know more about the disease and hopefully prevent kids from having such a hard time getting diagnosed.  I think Morgan enjoyed her first newspaper interview. :)

I needed some relaxing. Tonight, Morgan and I hung out at home. She is still catching up on school work, so she did some of that and we just hung out. Nice...:)

Run and Day 4 of No Diet Coke

Today I got up and ran with my RBFF Carmen. We did 6 miles, and it was so fun to run with her again. Been a while. I did hate getting up at 5:30, but it was worth it once I got there. :)

Today marks Day 4 of no Diet Coke or Diet Pepsi (sorry pepsi - I will still drink it when I do have a soft drink). But, I decided to try to go without for a while since it has been years since I have been more than a day without a Diet Coke or Diet Pepsi. I have had a headache all week, but I am geting used to not drinking it. It hasn't actually been as bad as I thought.

I am on a cooking roll this week, and I am really enjoying it! Tonight, I got the cleaning bug, and I went through most of my downstairs and threw out tons of stuff. I cleaned off my desk and around my desk, and I just tried to get rid of the clutter. Mike hung two pictures and got rid of a bunch of stuff too. I found the "anniversary" card from my 2 year anniversary at Bond. It was so weird to read all the comments. I also found my calendar from the year I was pregnant with Morgan. It was so funny to see all of the doctors appointments and such. Weird. Anyway, it was a cleansing experience to get rid of some stuff and to get organized again. :)

Raising Awareness!

I had an email today from another mom who has a 12 year old with Dermatomyositis. I am so excited! It was really nice to talk to someone else with similar circumstances.

Morgan also FINALLY got to go to her horseback lesson! She went once and then had to miss the last 3 due to all the craziness going on with her being sick. She was so excited to get to go. She just loves horses. She was visable tired after 10 minutes of riding, and that broke my heart but the smile when she was trotting

I also made salmon for Morgan for dinner for the first time ever. I don't really like salmon although I do like other types of fish a lot. I just can't take the smell of the salmon mainly. Anyway, Mike coached me on how to make her some salmon. It was SO easy, and she loved it.

Broiled Salmon Instructions (for other non-cooks out there who might want EASY)

Take a baking dish
Put foil in it
Spray it with pam
Get 6oz salmon filet
Put it on foil
Sprinkle salt and pepper
Flip over and spray foil with Pam again before putting the salmon back down
Sprinkle other side with salt and pepper
Drizzle olive oil on top
Broil for 15 - 20 minutes (check at 15)

Love my Tri Group!

Today was a much better day. We did get some answers for Morgan today, but we aren't exactly sure what that will mean for her treatment yet. We will need to get all of the pieces put together to find out what we do next.

The Wesley Chapel Tri Group is the BEST!!!!! Today, Holly brought her example letter that she is sending out to friends and family so that people could use it as a template if they wanted. Also, the excitement that everyone has to help us raise money and awareness for Cure JM is just phenominal. I have been so amazed at our friends and family and the support they have given during this difficult time. My Tri Team has been especially fantastic. Nothing like long, difficult runs to get a chance to really talk. It surely is nice to have such great friends.

The Wesley Chapel Tri Team and Friends are walking, running, or a combination of the two for the Jacksonville Bank Marathon (or Half Marathon) on December 19th. We are doing this as Morgan's Team to raise awareness and money for research. Juvenile Dermatomyositis is such a rare disease that most people haven't even heard of it (although I did hear that it got a brief mention on House this week!). Many doctors haven't seen a child with it, and it is often misdiagnosed (as it was with Morgan).  If you are interested in helping us, we will be selling shirts as a fundraiser (Morgan is designing them), bracelets for Cure JM, and getting sponsors for our journey to do the marathon or half marathon. It is my first marathon, and I hope I can do it. Every time I feel like I can't take a step, I think about what it must be like to have muscle pain every day. If kids with JM can do it, then I can surely run to support them. Our fundraising page is http://www.firstgiving.com/curejmformorgan and the curejm.com site has a lot of information about it if you want to know more.

Tonight, we did 4 repeats of one mile each. We did easy out for a half mile and then hard back for a half mile. Then, we did it 3 more times. It was hard as I haven't done any speed work in a long time.  It felt so good though when I was done!

Stressful Day

Some days, I just want to shout REALLY ? REALLY?

So, today I needed to deal with Walgreens screw up NUMBER 5. It is really unbelievable. First, Morgan was prescribed a prescription that has #3 in the NAME of the prescription and the Dispense Amount was written out and in numeral format as 17 (SEVENTEEN). Walgreens fills it with 3 pills. When I call them, they say, it was written for 3 pills. I tell the lady that it was NOT written for 3 pills because it said SEVENTEEN in all caps on the prescription. She says she will have to go back through the prescriptions. Of course, when I demanded e-prescribing, it didn't get there and I had an awful time waiting on the prescription to be filled. When I accept the piece of paper, this is what happens. Grrrr....
She calls me back to say that she found it, and they will have it ready for me "at no charge." Wow! No charge? Amazing since I ALREADY PAID the copay for it. Man oh Man... They also said they couldnt' fill one of her prescriptions because they thing the dosage is wrong. Seems odd since that is what she was taking in the hospital, but at least they are looking at something. Also, for some reason, they gave me another prescription that she gets but we didn't ask for it. I gave them 3 prescriptions, and I left with 2 and one pending their verification.

Then, I am looking at her discharge instructions from the hospital, and I see Zofran on the list. Hmm...that is weird, didn't I give them a script for that? I don't think I got it? Weird. I look and they didn't give it to me. They gave me a different med instead. Odd...So, I call them. They say, we have to prescription here for that. I tell them that I dropped it with the other two. They say that they only got 2. They do say that they got ahold of the doctor who verified the dosage of the other med. Then, they go and look again. WOW! They found it! Shocking! Amazing. Thankfully, it was just a PRN med, but how pathetic. This is seriously the FIFTH error that Walgreens has made. So, I took all of our prescriptions to CVS to see if they do better. I am thankful that I usually am good at checking for the right thing although I did miss the Zofran error. Man, isn't it enough to be a mom without having to obsess about their carelessness? I have even spoken to them twice now about the errors. They did give us one free prescription to make up for it. Wow.

Then, my other healthcare frustration today was that we STILL haven't heard back from the GI doc who was going to call us on Thursday of last week. I have called Thursday, Friday, and now three times today. Finally after my THIRD call, the receptionist says that she doesn't want to give the results by phone and can we be there tomorrow at 10:30.  I was so mad that I could hardly see straight. Frustrating. Obviously, this doctor has never had a sick kid.

Work has been pretty stressful too. I just love ARRA. I wonder how many providers will actually file for and get the money? It seems that a lot of them who already have an EMR even are not thinking they will get it.

I am glad I am running tomorrow as I think I need the stress relief! Some days are just better than others, and I am trying to take deep breaths and chill until they come. Of course, today is the day I had to pick to start eating better again. I had completely fallen off the wagon and had started eating pure junk every day again. So, today, the Diet Coke went. The eating out went. The junk went. Back on track as I know I feel better when I eat well. Glad I got those margaritas in on Saturday!!! Last ones I will have for a while I guess. :)

Lazy Sunday

Morgan was at her sleepover until around 11 and then she slept for most of the day. I finished the book "Life as we knew it" today. I really liked it. It is a story about an asteroid hitting the moon and causing the gravitational pull to get messed up. The climate changes, tsunamis and volcanoes, lack of food and water, people looting...it was all a bit depressing but fascinating. I really enjoyed the book. It is part of a trilogy and I am looking forward to reading the other two. I downloaded the next one, The Dead and Gone. I will update after that one.

Nice Run Today

This morning, Stacey and Eric met me to run, but Mike and Mark both decided that running/walking wasn't in their plans. Since Stacey and Eric were doing 3 - 4 miles and I neeed to do 8 - 9, I decided I would just run home from seven oaks. It was 8.75 miles from the clubhouse to my house. It was fun except that I didn't know how far it was. I was a little worried when I wasn't seeing the stoplight to turn toward my house, but it finally showed up. I really enjoyed the run.

The rest of the day didn't go so well, and it was a three margarita night. At least Tennessee didn't play football so they couldn't lose. Mississippi State beat Florida - YEAH!!!! Ohio State lost - YEAH! Auburn and Georgia both won! What a great day of football. I started falling asleep around 8 but I did get to see the Mississippi State game. Morgan spent the night with her friend Rachel for her birthday.

Glad to put this day to an end.

TGIF!

This was a good week to get behind me. Hospital stays...a fall down the stairs, sinus infections, hurting foot, sad times, nervous people...glad to see it be the weekend!!! The old Bond team met for lunch at T Flats (sorry Krishan). It was so nice to see everyone together again.

Tonight, Mike and the kids went to homecoming and Morgan and I hung out at home. She got me started reading this book called Life As We Knew it. It is addicting and I love it.

The Blahs

Today has just  been one of those blah days. I haven't felt very good because my sinuses are acting up - it MIGHT have to do with our pond being completely yellow. I am tired and still getting back to my routine from being in the hospital for a week. I haven't gotten to run since Sunday. Work is not very fun right now due to lots of changes. So, I am just chalking today up to the blahs....Good night!

Discharge Day!

I am now to the point where I can't sleep past the 5am resident visit, and I can only tolerate grilled cheese from the cafeteria. I do love that you can order room service for your child and that she can get whatever sounds good instead of some menu that is designed by someone who was never a child. I cannot imagine my tri coach Holly in this hospital. She would starve. :) However, for kid food, it is pretty good but only for 3 days. Day 4 was getting icky. Day 5 was way too much. Day 6 was just over the top. :)

We finally got discharged around 6pm. I was so very happy to get home! Denise, Victoria, and Alexis came and brought Morgan a get well cake. It was very thoughtful! Thanks for the visit and the yummy cake. They also brought a designer snuggy. Didn't even know they made such a thing, but we love it! Keeps the girls warm in the freezing house of Mike. :)

Chronic Care in America

I am usually a big defender of our health care system as I have been part of the machine and seen so many people try to help so many patients. I feel like there are so many things that we could improve, but I have always felt that our health care system is awesome despite the issues that could be resolved. Of course, I still am proud of all that our health system does, and I still think we have fantastic people and resources.

However....

As the mother of a chronically ill child, I have to say that it is very frustrating to watch three different specialists see your child and treat the one thing that they care about and not look at how it all fits together. For example, a rheumatologist prescribes a med to help with the chronic illness but that causes severe headaches. The neuro sees her and prescribes a medication to use for the headaches. The rheumatologist reduces the dosage of the 1st med and adds an IV version of that same med to see if it helps the headache. The neuro prescribes more meds for the headache. The belly now starts hurting. The GI says that it is because med #1 was decreased. Hmmm...Doesn't it seem that all three of them need to TALK to EACH OTHER? They are all operating on the part that they are concerned with and not seeing that they are related.

It is also very frustrating as a mom to try to keep up with all of these different pieces. It seems that they should collaboratively come up with a treatment plan that covers all areas and then each report in on their part, findings, problems, adjustments, etc. The patient could report in on problems, concerns, compliance, etc.

I seriously wonder how people without medical background can possibly figure it all out. Of course, that is just the care. Then, there are the bills. I will have to leave that for another day.

Hoping for some collaboration...

Sunday in Hospital

Morgan's friend Rachel and Alexis, Miya, and Cheyanne came to visit her. She was really happy to have some friendly faces. She felt better today, and it was so nice to see her smile. The Rays won the baseball game to bring the final game back to St. Pete.  I am tired of the hospital couch, and I am tired of the hospital food. I am tired of Morgan feeling badly. I want to go home, but I want her to feel better.

Saturday in Hospital

Ok, today, the hospital was not my friend - or so I thought. The Tennessee- Georgia game was not even on the TV there. What is up with that?

However, after following it online for a while, I was very thankful. I think it was God's way of saving me from the pain. :)

Morgan had visitors today which made her day. Tori came, and Belize and Erica came. She really enjoyed seeing her friends.

Cool Get Well Town

Today, Morgan was managed by pain meds and she started a new med for hear headaches. She didn't even turn on the cool TV until the afternoon as her head was hurting so much.

All Children's has a very cool TV system called the Get Well Network.  When you turn it on, it says Welcome to Get Well Town and has an airplane that flies across the screen with her name on it. It also shows the number of kids in the hospital and her admitting provider's name. You can go on the internet on the TV (it is like a 40 inch flat screen), watch TV, watch movies (good ones), watch educational videos on conditions, and play games. It is really super cool. Also, you can do surveys and nominate nurses for an award. Morgan likes it because it is cool. I am very impressed and can see a million possibilities that you could do with it. Why didn't I think of that?

Flight Home and ER

We flew home today from Chicago, and Morgan started feeling really badly at the airport and through the flight. By the time we landed, she was really hurting (head and tummy). So, we went to All Children's. She was admitted after her spinal fluid pressure was too high. The spinal tap made her feel a little better, and they changed her meds to try to slow the production of the fluid.

When they did the spinal tap, they convinced Morgan that she didn't need sedation and that she should be a big girl. In the future if she has to have one, I will definitely encourage the sedation. I felt really badly for her. :( This amazon lady held her down, and at one point Morgan was crying and said that she couldn't breath the way that she was being held. She said, "if you can talk honey, then you are breathing." I thought that wasn't so nice. :( Morgan was a trooper though and we made it to the room around 2am.

Doctor

Today, I got up and ran through Lincoln Park. It was really nice to get out and run in 40's weather. WOW, I am MUCH faster when it is colder!!! :) I did 5 miles and felt really good. Then, we did a quick stop in the American Girl store in Chicago where we looked for Felicity stuff as she is being retired at the end of the year.

The doctor visit itself was very long (we were there about 7 hours), but Dr. Pachman spent over an hour with us herself. They did the nail study, a lot of labs, physical therapy eval, and x-rays. We were so exhausted after the day, and Morgan was starting to feel badly by the end.

We decided to play it low key and eat at the hotel at Mon Ami Gabi (I love this restaurant. It is fun and the food is great). We crashed early.

Travel to Chicago

This afternoon, we let for Chicago. We were lucky and all had "A" numbers on Southwest. I actually paid the Earlybird $10 for Morgan and I so that I didn't have to worry about checking in. I knew I would be frantic on Monday and wouldn't have time. The last time we went to Chicago, I forgot and we were C's. Oops... Mike always has a A as he is a Southwest God, but I am of no status on Southwest as I usually fly Delta.

Joanne was nice enough to pick us up in Chicago, and she took us to Gino's pizza. It was soooooooo good. YUM. Then, we went to iCream which is an ice cream place where they make the ice cream in front of you. Very good! I had banana frozen yogurt that was flavored purple. It was such a weird thing that my brain struggled with it because of the color. :) Morgan of course had chocolate which can't be colored (she was bummed but still wanted chocolate!).

We stayed at the Beldon Stratford again. We were lucky and had a 3 bedroom suite this time because it happened to be available. It was nice to have room to spread out. We love the Beldon Stratford and the location.

Busy Day

Since we are leaving tomorrow to go to Chicago, today was super busy of course. Lots going on at work, with friends, and with my family. I can hardly keep up and feel as though I just might explode some days. I think I need an assistant or something. Deep breaths, deep breaths...

Homebound Sunday

Morgan still wasn't feeling well today, so we just hung out at home. She is behind on a lot of school work (virtual and regular) from being so sick this week, so she has been playing catch up. I have been thinking about regrets a lot lately. I have always been a big believer in no regrets. You make the best decisions you can with the research or info you have at the time, and you accept that you did what you could no matter what. Howevr, there are those few things here and there that you really give yourself to. The half ironman was one of those things for me. I would have really regretted it if I either couldn't do it or if I hadn't finished in the time allowed. Work is another one. Sometimes, you pour yourself into work and it is appreciated which is great and other times you relax and everything turns out fine regardless. With illness, you worry about regret because it can be such a severe cost. It is very different than other decisions. But, in the end, you have to go with your gut and the best information you have and move on.  Of course, the thing that you get the most of is perspective. Whenever you get curveballs thrown your way, it certainly makes you realize that sweating the small stuff just isn't worth it. So, here is to another weekend gone and another work week to come.

Bike Ride

This morning, I went on a bike ride with friends. It was really nice to get some work in while getting to chat and laugh. I think this is such a great way to reduce stress. Too bad I can't just ride around all the time on my bike. :) Today, I am going ot just hang with the Morgster. Mike is out of town, so we are just chilin.

Life is a Roller Coaster

I have had some pretty up and down times lately, and I felt like I needed to take a break from blogging as I am not very good at filtering sometimes. I didn't want to say something that I would regret later. However, I have really, really missed it. And several times lately, I have looked back at other times when I have blogged and read what I wrote. It is always informative, educational, and often pretty funny to read. So, I am back. :)

So, pretty much, my life is wayyyy too stressful right now, so I am going to try to fix that. My goal is to find ways to reduce stress every day. I can't change the lemons that are thrown at me, but I certainly can make different kinds of limonade. :)

So, today is day 1. Morgan just got out of the hospital and we are going to go see some friends. I know we can't stay long, but it will do us both some good to be around some close friends who we don't get to see nearly enough.