Christmas Recap

It was a lovely Christmas for us. My brother flew in from NYC and joined us for Christmas dinner at my parents and my sister in law and her daughter were here for Christmas Eve at Nathans parents. It was a nice quiet weekend and we were able to relax and unwind after all the hustle and bustle of trying to find perfect gifts for those on our list. Allorah got a lot of clothes, pajamas, makeup, desk, a digital camera and other stuff and Jo got some new Toms, MAC makeup and brush set, pajamas, clothes and money. And even LuLu got a fancy blinged out collar. So all in all it was a success.


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Lunch Date

Today I was able to enjoy an afternoon lunch date with my long time best friend, Danis and her beautiful baby girl, Delanye. I don't get to see them as much as I would like to but nonetheless is was a wonderful lunch date. Here are a few pics.











Danis & Matt, you guys have such a beautiful angel, thank you spending the afternoon with me today! Love you guys!
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LuLu Sightings

Here are a few recents pics of our precious LuLu Belle. This puppy has stolen my heart. She is the cutest thing ever!











The vet told us that she is obese for her size and age and that she needs to be on a diet. We say it's a thyroid disorder. LOL! She is just to cute!
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Catching Up

It's been awhile once again and I am trying to play catch up on all that we have been doing.
We were in Denver recently for a Broncos game and we had a great time. Nathan's parents joined us, as this was his dads first Broncos game. It was a victory and such an amazing game. Nathan and I had a wonderful time and did some Christmas shopping while we were there. The weather was perfect.

In our game day Bronco gear!

Dad & Son

$12 Bloody Mary, green chili cheese tater tots and a Bronco dog!

So as you can tell it was a good day!

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A Little on the Lazy Side

It's been super crazy over this way and I haven't blogged in quite awhile. I'm sorry, I will pick up the pace on that. :)
Not much has happened in our neck of the woods. It's been a trying time these last few weeks but nothing that can't be worked on. Nathan and I had Thanksgiving at our home and I was so blessed I was able to have my husband home for the holidays. My brother, Shaun, came down from NYC and joined us too. My parents, in-laws and Nathan's sister and niece joined us too. It was a nice day.
We have decided to sell the Ford Excursion and get another car since we have been doing so much back and forth traveling. If anyone is interested call or message me. Here is the link http://lascruces.en.craigslist.org/cto/2728486317.html
It's a good truck but right now we don't need a diesel.
We are heading to Denver this week to catch a Broncos game on Sunday. We are so excited and this is our Christmas gift to one another, a mini vacay! We invited the kids but they were not excited about going to an outdoor game and freezing their nuts off!


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Crash Test Dummy

Thank God she is OK, but Jo got into an accident yesterday when she was coming home from school. A car rear ended her as she was in the turning lane. The back end of her car is banged up and the trunk is popped open but she is not hurt. She woke up sore and with a headache today but she has a chiropractic appointment tomorrow and will get fixed up. Poor girl, she was so mad yesterday at the young girl who hit her, but thank goodness she has insurance. One more thing on my list of stuff to worry about. :(

She is Growing Up

On Sunday we let Jo go to a concert in Albuquerque, which isn't a big deal except for the fact that she drove herself! EEK!!! Yes, she drove herself to the concert and back. She has never driven on a highway to my knowledge at least, so this freaked me out beyond description. Nathan informed me that I have to let her grow up and not keep such a tight rein on her so I reluctantly agreed to let her take her car and drive. She left early in the afternoon with directions that Nathan gave her and off she went with a friend. I was a nervous wreck ALL day long. The concert didn't start until 8 or so and was over at almost midnight. Jordyn is a self proclaimed Mac Miller fan, so she just had to try and get a photo with someone in the group and an autograph so they waited at the buses. She lucked out and got a pic and he signed something for her and then they went to eat and gas up and hit the road. She finally rolled in at almost 6 AM!!! I could not sleep to save my life and I wanted to text every 5 minutes but was told not to do it!! Haha! It turns out she did A OK and didn't freak out on the highway drive as I suspected she would. She took it slow and steady as Nathan told her and she did fine. Too bad Mom couldn't relax!

Appointment Results

Her appointment went really well and she is doing better than I thought. Her A1C went to 6.4 and it's down from 6.7. That's good news. She isn't too concerned about the glucose spilling into her urine because she said that can happen with just slightly elevated sugars. She said she follows what the A1C and blood sugar readings show. I'm so happy and Lola was so relieved. Dr. Kauffman was so happy that she grew 2 inches since her last appointment. So the plan of action is to be more diligent with her diet and increase her water intake. We will come back in 6 months or sooner if need be. YAY!!!


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Fingers Crossed

We are on our way to see Allorahs endocrinologist in Albuquerque today. It seems her sugars aren't being controlled by diet anymore and her glucose has now spilled over to her urine. So we are looking again at being on insulin. It's not a good thing for anyone to hear let alone a 12 year old. This will devastate her and I am praying that Dr. Kauffman will have some other idea and route and it won't be insulin. Nathan and I try so hard to watch what she eats and try to limit her carb and sugar intake but it is so hard. Her diet is so limited already and it seems so unfair to keep taking away foods that she can eat. Ugh! It's just so frustrating!! There are days when I just want to scream amd cry and lose it but I can't. She needs my strength and I definetly need hers today!! Please keep her in your prayers for a positive outcome at her appointment this morning.


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Yay Jo!!

I am proud to say that Jo has once again entered the work force!! She starts her new job on Wednesday and is so excited. We told her that if she got a job by the 13th of this month that she would be able to go to the Mac Miller concert in Albuquerque with her friends on Sunday. She is on cloud 9! Way to go Jo, Nathan and I are very proud of you!

Most Romantic Day of My Life...

Here are some of the photos that we have been anxiously awaiting from my good friend, David Thompson and Aaron Matney....

We have a few more to post but will work on that later this weekend. What a beautiful day it was...

LuLu

Meet the newest member of our family, chunky French Bulldog, LuLu Belle Barton




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IVIG OMG!!

Today is Infusion Day for Lola. This is our monthly ritual. So as I was laying in bed this morning, it dawned on me that this month marks the 5th year of her receiving monthly IVIG infusions!! While she has been getting Solu-medrol and Methotrexate infusions since day one of her diagnosis and weekly ones for a couple of years at that, I cant believe that it has been a whole 5 years that we have been doing the IVIG dance. That is roughly 60 infusions! With these bad boys costing around $22,000.00 each, that's alot of dinero in 5 years! No wonder my insurance company gives me hell when trying to get a prior authorization for these treatments. Many people ask me what is IVIG, so here is a little tidbit of information.
Intravenous immunoglobulin (IVIG) is a blood product administered intravenously. It contains the pooled IgG (immunoglobulin (antibody) G) extracted from the plasma of over one thousand blood donors. IVIG is a blood derived product that has been used in the treatment of children with JDM. IVIG consists of purified antibodies which are proteins that the body's immune system uses to fight infection. The mechanism of action is unclear, but IVIG has been shown to slow down the inflammatory process. Side effects like headache, fever, and vomiting can occur, but they are usually prevented by pretreating with Tylenol, Benadryl, and sometimes the addition of a steroid.

I have been very fortunate that my dad insists on taking her to her infusions. She feels comfortable and at ease with him and he wants to be there for her. And he is retired so he has nothing better to do!! LOL! When we first started doing these all day long infusions, it was a bit easier, she had a port then. All they had to do was access the port and viola, it was going. Then that port was no good and we had to get another port and then that one lasted a whole 2 weeks. So then we were told that she could no longer have another port as they believed her body rejected them and that was what was causing the damage to the port tubing, the calcinosis that forms in her body. So then it was IV sticks and that was not fun. It used to take me, my dad and an extra nurse to hold her down, that was even after sedating her with some Phenergan. Allorah gave them 2 chances to stick her and if they couldn't get it on the 2nd try, we left, that was the agreement. She runs a hard bargain, that girl. Well, she became such a hard stick that I finally starting asking for the anesthesiologist to come in. We have been so blessed that they have been so willing to come in and start her IV each time we have gone in, so a big thank you to the anesthesiologists at GCRMC, especially Steve. You all have made this a lot less stressful for Lola and for us. Allorah now just goes in and weighs herself and gets settled in and sits by herself while they start her IV and get it going. No complaints or tears anymore. She is truly amazing. I hope and pray that one day there wont be anymore infusions, any more medications and no more doctors. That she will be cured and in remission and this will all be in the past.

Wedding Package Photos

We just got in the CD of our photos. Here are some pics from the wedding package photog. Not that many great ones, so that's why we are so excited to see the ones taken by my amazing friend/pro photographer extraordinaire, David Thompson and Aaron Matney. We will post those as soon as we get them. I got a text from David and we shoul get them this weekend.

Chicago Info

It was a whirlwind trip this time and we barely had time to sit back and relax. It was GO GO GO the entire trip. We are back home and back to our "normal" routine. Her appointment went well and she grew 2 inches!! That is a big deal for kiddos who are on Prednisone or any long-term steroids, as they stunt the growth. As soon as Lola walked in to clinic, everyone commented on how much taller she was! Dr. Pachman was so pleased at how well she looked. We met the new the PA and a few other new faces. I sure hope Doc gets some more help, she is so swamped with JDM cases. There are some concerns that she wants to address, as Allorah is complaining of trouble swallowing food (dysphagia), which is something that is common with the progression of JDM, that concerns Dr. Pachman very much so she will need to have a swallowing study when we come back in January. She also has to have another pulmonary function test to follow the slight pulmonary fibrosis that she has in her lungs. That will be done in January as well as a consult with the pulmonologist that is Dr. P's associate. So far her PFT's have come back normal so lets keep praying for that. She is also scheduled for a bone density scan (DEXA) to help check and follow her osteopenia, that she has developed from the long term use of Prednisone. She has a lump on her chest that she is sending us for scans to check on. It may be calcinosis or a possible cyst, but whatever it is, it can be removed. Her muscle strength is about the same but her range of motion is worse. Her flexibility is tight and less so she stressed the need for her to increase her exercises and therapy at home or they will be putting her back in PT a few times a week. She was not thrilled about that, but either she takes this serious or she will hinder her ability to walk right and have proper posture and have increased pain. The whole gamut of labs were drawn and we should be having those back in about 2 weeks. So its the waiting game until then. We are hoping that we can continue to decrease her Prednisone and possibly the MTX as well. I hate that shot!!
We travel back at the end of January and hopefully by then she will be more flexible and better labs, so I'm crossing my fingers!!

Chicago Time

It's that time again for Allorahs doctors appointment. We are here at DFW waiting for the next leg of our flight. It's gonna be a long day. Hopefully the traffic won't be too bad when we get to Chicago and can make it to Toro Sushi at a decent time and before it gets too crowded. Allorahs not the most patient person when it comes to her food.
You would think this trip that we have to make every 2 1/2 to 3 months would get easier but it doesn't. The realization hits home each time that there is no cure yet, that the JDM still ravages her little body and that the awful medications are still coursing thru her system. So no, it never gets easier. 10 1/2 years of this is alot for anyone to have to undergo. I look at Allorah and I see a hero. Someone who never complains about being sick or about losing her hair or the nausea that her medications cause or the pain from the injections each week for her chemo or the IV infusions each month. She no longer cries when it's time for her blood work, she now jumps up on the MRI and CT scan table by herself, she now asks the doctors all her own questions and she now prepares her own injections and checks her own blood sugar. She no longer needs me to lay out all her pills each day, she does it herself. No child should ever have to experience that and yet mine has. I hate this disease!!!
So now I have vented and here we venture on. Searching and searching and praying for a cure. One day...


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Location:Gate 9 at DFW Airport

2000 Views

Just noticed that our blog has had 2000 hits! Wow! Thank you to all our family and friends that take the time to read about our adventures and to check and see how the girls are doing and last but not least to all the people who are just plain nosey. You know who you are! LOL

Broncos

It was yet another sad day for the Broncos, but at least we looked good!



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Did She Seriously Just Say That??

The random things that come out of my daughters mouth's from time to time are enough to crack me up and sometimes make me choke on food or whatever beverage that is in my mouth.
Me: You will be grounded until you bring your grades up. Period.
Allorah: I cant work at the church fiestas this weekend then?
Me: No
Allorah: But grandma and grandpa already told the church people that I would work the booth and help them out. So I still cant go?
Me: Nope
Allorah: So, let me get this right, your telling me that I cannot work for Jesus this weekend?
Me: That's what I'm saying, I will have grandma personally tell Jesus that you cant be employed by Him this weekend because your grounded and I'm sure He will understand your dilemma.
Allorah: Boo.

It's gonna be a long weekend so thank goodness my husband will be home this evening! LOL

A Teaser

Here is a teaser from one of the photographers...







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