Happy Halloween

Chicago Visit Impressions

Once again, it's been a long time since my last post. It has been so unbelievably busy in our life and so so much has changed and transitioned. Allorah just had her appointment in Chicago with Dr. Pachman yesterday and we are finally heading home. 

The new Ann and Robert H. Lurie Children's Hospital finally opened and all I can say is WOW! It is absolutely stunning. Here are a few pics.

Fish aquarium in 2nd floor entrance

Display in front of aquarium

Huge whales hanging from entrance ceiling

Check-in desk

PFT

She started off her day with a Pulmonary Function Test and all went well. She had a little difficulty with one of the tests but ended up doing real well. We then left there and went to the Outpatient center for Dr. Pachmans appointment. We had a beautiful view from our exam room.

Nail fold photos with Gabby

She had her nail folds photographed for research as she usually does and then had her PT and OT consult and shined!! Her CMAS scores weren't up 4 points!! That is the best news! She is now at 50 and we are so thrilled! Dr. P came in and was so happy to see her and how well she looked. She exams her and ordered an entire skeletal bone series X-rays to get done. She ordered labs and said if all looks well then we can start weaning her off the Methotrexate which is the chemo injection. That is great news! She needs to continue her exercises at home and increase her stretching and core work and then we have to come back in January. We then left there and went to get X-rays and lab work.

The new Ronald McDonald House was beautiful and so nice. There was a roof top terrace that had such an amazing healing garden and steps stones from some of the families that had stayed there and lost a child. It was so moving. If your looking for a charity to donate to, please consider the Ronald McDonald Houses. They are amazing and such a comfort when away from home because of a sick child. So our visit ended with an amazing dinner at Lou Malnati's there in downtown Chicago. Ahhhhhhmazing as always! They even just started carrying a gluten free pizza dough a few weeks ago and Lola said it was the best pizza she has ever had.

Lab Time

So here we are the lab once again. It seems like she was just getting a bazillion labs a few weeks ago..... Oh yea, she was!!


So today she went in fasting for her endocrinology labs. Her appointment is on Thursday in Albuquerque with our beloved, Dr. Kauffman. These labs today will determine whether or not she will be on insulin. This was her last opportunity to maintain a very strict diabetic and gluten free diet and get a better control of her sugars. She has been doing great since we went to Chicago for her last appointment with Dr. Pachman. I'm so proud of her. So hopefully Dr. Kauffman will get great lab results and forego the insulin therapy. Let's keep our fingers crossed. Now we just have to get her cholesterol and lipids down and that will be another milestone. So a trip to a pediatric cardiologist is in our sights.
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Graduation Weekend

Thank you to all our family and friends that came from near and far to help us celebrate this day, we love you all!
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Graduated!!

She has been unleashed on the world!!











I can't believe I have a high school graduate! It seems just like yesterday that you were graduating from preschool...



And here she is a grown up!
We love you Jo and pray you continue to grow into an amazing woman who continues to reach for her dreams!
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This is my beautiful view during my evening runs!


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Appointment Info

Allorah had her 3 month appointment in Chicago on Monday and I'm just barely getting around to telling you all about it. Sorry, it's been so busy and hectic in our lives lately that its hard to keep up with this.
Dr. Pachman is once again pleased with her progress. Her range of motion has again got better and she is somewhat more flexible.


She has been doing her stretches every night and it has helped. However, she has developed scoliosis and had a series of spine x rays done to see the severity. Her right shoulder is about one inch higher than her left and is causing her some lower back pain. Dr. P thinks that some physical therapy a few times a week will help to build her core strength and help alleviate the pain that this is causing. She isn't too thrilled about this but it does scare her. The normal amount of labs were drawn...


and as usual she had to drink some juice right after to keep from passing out! We went in for a CT and her x rays right after and had her favorite lunch, Chipotles. As long as you feed her, she will do anything. LOL We are hoping to finally wean her completely off the Prednisone for the very first time ever in the whole 11 years that she has been on it! That is exciting and promising news and we couldn't be more thrilled. The weaning process has taken a toll on her diabetes and thrown her blood sugars into a tail spin but we are hoping that once she is completely off and stable that they will normalize. Fingers crossed. She does have some calcinosis still on her right arm and it is trying to make its way to the surface where hopefully it will break thru and the body will rid it on its own. If not, then she may have to see the plastic surgeon again for removal. We go back in August for follow-up but until them we just await for all the results. Thanks for all the prayers!
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Grad!

So is it obvious that Jordyn is part Italian?!


She literally bedazzled every one of her graduation announcements and made cheetah print party invites. Geez!
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Settling In

I have been so busy these days that I don't have time to even go to the potty at work. I work all week and then right after work on Friday, I meet Nathan and park my car and we hit the road to Alamo. We work on the house from Friday night until Sunday early evening and then we hit the road and head back home only to go back to work on Monday morning and do it all over again. So much for relaxing weekends anymore. We are just so exhausted these days. I miss my kids and some night are just so hard for me. Not being able to hug Lola everyday and get her up for school and have her there bugging me in the kitchen when I'm cooking dinner it's brutal and I miss it. :( Just a few more months and then we will be whole again. I cannot wait. My hubby probably gets tired of me whining about it.



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Birthday dinner

I'm a few days late on this but I hate to admit that I am another year older. Last Friday was my birthday and when we got back into town my family took me to et dinner. Heres a picture of me and my girls.


Starting to feel like I'm in my late thirties now!! Boo!!

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New Beginnings

This week has been a whirlwind so far. A new town, new job, new surroundings and life finally with my husband. It has also been a difficult time for me, days without my kids and without my parents and without my friends. Thats what's hard and that's what I miss. I do love it up here, even with the freaky weather we had the last few days, from sunny to white out snow to hail and back to sun. Change is hard for me and like Nathan tells me "it's what you make of it". I know once Allorah gets up here and we have a permanent house it will be better and more like "home". Thank God my husband is so patient and understanding of what I'm going thru.
As far as my new job, it's going great. I'm still in orientation until tomorrow and then I will be turned loose to my supervisor to train and learn until my office opens on May 15th. I have so much to learn as far as all the programs I will need to utilize to run the office but I look forward to the challenge and opportunity to get this clinic off the ground. The support system that I have is amazing there.
If you are family and close friends, you know that Nathan just had an emergent surgery on Monday at the hospital in Santa Fe and thankfully he is doing well. He will be off of work for about 2 weeks to recuperate. I had to take the packing out for him last night and it was so painful for him and painful for me to have to cause him that much discomfort but he just grit his teeth and did it. Thank you to all who have checked on him and sent well wishes. It's been a rough start of the year for him but thankfully I was here to take care of him. A special thanks to his Lt. Eric and his lovely wife, LeaAnn, for being there at the hospital with him and for Orlando, who took him to his appointment with the surgeon on Monday morning. Thanks guys!


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AGHHH!

Friday was my last day at work and this week I am tasked with getting my stuff together for the big move on Sunday. I cannot for the life of me get my tail in gear to get this done. I am so overwhelmed that I just sit here and look at stuff and not know where to begin. It would be so much easier if we had a permanent place we were moving into and not have to be coming back and forth every weekend to get this house ready to sell. So this is just a lot on my plate. The stress is mounting!

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Weekend Getaway

Nathan made us reservations for a little weekend getaway. We are heading out to Buffalo Thunder in T-minus 1 hour!! Ahhhhhh, relaxation, dining and spa services. What more could a girl want! My husband is amazing! Just saying!


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Kids Vacay

The family is heading back from their Vegas vacay today and it seems it went well. We got a few pics of their misadventures.














Lola went to go see Phantom of the Opera at the Venetian and she absolutely loved it! That is her favorite musical and she knows all the words to every song! She is such a cultured diva! They did the sky walk at the Grand Canyon yesterday and almost have my mom a heart attack when they took pictures by the ledge. My mother is deathly afraid of heights so I'm interested to know if she did the walk too.
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Flying Kids

Today the kiddos went zip lining over Freemont St. Allorah said she had so much fun and enjoyed herself. Here they are fixing to become flying squirrels!


I was so surprised that they wanted to do this but so glad they did. They are at Mystere, a Cirque de Solei show there in Vegas. I can't wait to hear about it. I hope they have an amazing time tonight.
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Spring Break Blues

My kiddos left yesterday to Las Vegas and were so excited.


They drove to Flagstaff and were going to leave at 8 to hit the Grand Canyon.... Or so they thought! This is what they woke up to


I-40 is shut down and they are stuck. They are not happy campers! None of them packed for snow. I hope they drive carefully once they get back on the road.
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Spring Break

Today starts Spring Break for the kids! They are so spoiled and will be heading to Las Vegas with my parents. They will be stopping at the Grand Canyon to do the Sky Walk on the way up too! I am jealous and wishing that Nathan and I had gone to do that when we went up in September. They will be doing some major shopping and heading to a Cirque show at Treasure Island, where they will be staying. I hope they have a great time and they dont drive my parents bananas! I wish the weather would cooperate better, since there is a cold front coming in this weekend and it will be pretty chilly up there. :(
Thanks Mom and Dad are for taking the girls and for always being such amazing grandparents to them. They are so lucky to have you in their lives. Have a safe trip, God bless you all and most of all, have a wonderful time!

Hallelujah!!

The job offer came through at the place I was praying for! I am beyond ecstatic and so blessed for this opportunity! The staff and physicians that I have met with so for have all been amazing! This is going to be a wonderful ride that I cannot wait to start with my family. We will be living in a beautiful area that I have loved ever since I was a young girl and where my parents used to take us as kids all the time. Thank you to all who prayed for me and to all who had my back!


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Waiting Game

Please say a prayer for me in the hopes of getting this amazing employment opportunity. I met with them last week and the position posted this morning and I submitted my online application right away. Nathan and I are really praying for this so I can use your positive vibes. Thanks all!


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Bob Villa Step Aside

In anticipation of my soon life up north, we are preparing our home to sell. We are doing so home renovations and upgrades and we have been so busy. Recently we started refinishing the floors in what used to be Jordyns room. We are now almost done. We need to repaint the floor boards and paint the bottoms of the walls and then hang up the new ceiling fan, blinds and new door and closet door. But the major work is done. I painted the walls a warm grey and we ripped up the carpet, sanded the hardwood floors and voila...





Aren't I crafty?! I think so! Me and the other half are an amazing team and enjoy this type of stuff or maybe it's the paint fumes that are rotting our brains! Stay tuned for more posts from This Old House!!

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So I wait...

I was in Santa Fe this past Thursday for another interview at a place that I would really like to work. I am waiting to hear back and  I still have my fingers crossed. This job would be perfect. Everyone that I have met so far from this place seems to really love their job and surrounds so I am praying hard for this. Hopefully I hear something soon, the anxiety is killing me.

Chin Up

I just got word that I didn't get the job that I was really hoping for. I would be lying if I said I wasn't bummed. So the search continues. Things happen for a reason and I did tell the lady at HR that I would definetly be interested in other positions as they come available and to keep me in mind. She did say I interviewed really well and they were impressed so that makes me feel somewhat better. So..... Chin up buttercup!

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The Vow

Just saw The Vow with a big group of great peeps and had a blast! Thanks, Lola and I had fun. Seeing this movie reminded me of the vows that I took in September when I married my best friend.
"I fell in love with you within moments, moments that will last my lifetime. I admire you for your ambition and focus to be a great man for me and the girls. I respect you for your strength and fortitude. I am so proud of who you are and who you make me strive to become and for the first time, I feel as I'm the lucky one. I promise to always be your biggest fan, to kill all the spiders and never ever hide onions in your food! I love you times infinity!"



Finding that once in a lifetime love is priceless, cherish it with every breath in your being, hold it close and never look back.
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All Prettied Up

It was the winter ball at Allorahs school tonight and she got all fancified. I can't believe she is this grown up already. Where has the time gone? I miss the diaper changes and midnight feelings!


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Fingers Crossed

Yesterday I went to Santa Fe for a job interview. I don't want to say too much, as I don't want to jinx myself, but I am hoping this is the one. It's what I have done before and the ladies seem wonderful, the position seems perfect and the environment seems amazing. I should know by probably Monday so I am hoping for good news.

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Doctor Update

I got a call this week from Allorahs doctor and got some results of some labs. It seems all looks great and she is stable so we have the ok to start decreasing and weaning her off the horrible Prednisone. I am so ecstatic! She does want us to recheck her fasting labs as her cholesterol and A1C is still high but when we had labs drawn in Chicago she had ate breakfast and that may have increased her numbers so she will have those drawn on Monday when she goes in for her infusion. We are still waiting to hear about her X-ray results. Hopefully no calcinosis and no surgery. Yesterday she had some low blood sugar and my dad had to take her a fruit roll up. Her blood sugar was 53. She was running late and didn't eat any breakfast and she crashed. So lesson learned she informed me this morning. :) We got approval from her insurance for her very expensive IVIG infusions and she is set to go for the year. Every year we have to perform this song and dance to get prior approval and it's so stressful so we are good to go. Thank you Meghan at Dr. Pachmans office for getting this done. We greatly appreciate all your hard work!


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A Lesson To All

So in my last blog post I briefly touched base about Nathan having a health scare recently. Many people have asked exactly what happened and if he is ok. He is doing well thank God but it was a very scary 36 hours or so.
So as you may or may not know, he has had a recent bout of gout that has lasted about 2 months. Sometimes it has caused so much pain that he has had to call in to work because he couldn't even put his boot on or put any weight on his foot. He has altered his diet, increased his water consumption and even got on holistic gout medications and cherry extract juice. Still no relief. I finally talked him into seeing his physician. So last Monday he went to see her. She gave him a Kenalog injection for the inflammation, ordered a battery of labs and gave him a prescription of Colchizine, a gout medication.


She advised him to go get it filled and take one every hour until the gout pain is gone and then to come back the following day for another Kenalog injection. So off he went to the pharmacy to get the prescription filled. He took his first dose at about 5:00. If anyone knows my husband, you know how anal he is, he set his iPhone alarm to go off every hour to alert him to take his pill. So until 1:00 AM that night he took a pill every hour. I told him not to take it throughout the night so he set his alarm to go off at 8:00 AM and start his next dose that day and then every hour that day. He went back to his doctors office and got the second Kenalog shot and the nurse asked him if he was still taking the medication every hour and he said yes. He got home rested some and that evening him and I went to dinner. He took his final dose at 8:00 PM that night and within a few minutes of that dose he started feeling bad. That's when the diarrhea started and it was literally nonstop. After about the 6th trip to the restroom, I told him to weigh himself. He weighed in at 201. He attempted to go to sleep but the nonstop diarrhea would not let him. After doses of Pepto and Immodium there was still no end in sight. Wednesday morning came and he still was going at it. Poor guy was exhausted. He went back to bed and I went to work. I looked up foods to help with diarrhea and at my lunch I went to Walmart to get some food and Pedialyte for him. As soon as I walked in to the house it was so clearly evident how sick he was. He looked horrible and sounded just as bad. His skin was this weird gray color, his eyes were sunken in, he was a bit lethargic and even his voice sounded weird. He said his throat hurt as well. That was odd. He asked me to look at something online. It was the dosing instructions for the Colchizine. They were not as what the doctor had written. So I took a photo of the bottle and told him that I would call the pharmacy. I had him weigh himself again as it was clearly evident that he lost more weight. He weighed in at 191! He had lost about 12 lbs in about 12 hours! I tried to convince him to let me take him to the ER but he just couldn't leave the house, his diarrhea was still that bad. I told him that if he didn't get better by 3 that I would be taking him to the ER. I got to my office and called Walgreens. The pharmacist told me that the maximum number of pills he should have taken was 3 in a 24 hour period! He had already taken over 20 in 27 hours!! I told him al the side effects and was concerned of an overdose. He told me to call the doctors office or Poison Control or go to the ER. So I called his doctors office and told the nurse. She said that there really wasn't anything that they could do for him there and that he might need his stomach pumped but she would ask the doctor and call me back. She called back and said that the doctor said to go ahead a go to the ER so he can get hydrated and that we should be reassured that he can't "die from this medication!" I went and picked him up at home and took him to the ER. The nurse took him right back to triage. She asked how many pills he had taken and when we told her she took him right back and sent in the doctor. We told him the whole story, showed him the pill bottle and he was very concerned. Nathan wasn't feeling to well by this time and I was scared!


They started his IV, got labs drawn and started him right away on hydration. The doctor came in again while he was on the phone with poison control and verified the amount of pills he took. He came back in a few moments later and advised us that the toxicologist at UNM wanted his airlifted to Albuquerque immediately. They were worried about toxicity and multiple organ failure. We were in shock! Nathan turned whiter that he already was! He ordered him 50mg of charcoal to drink. I felt so sorry for him.








Even with him feeling horrible, he still was kidding around and being his silly self. I went home to pack our stuff and hit the road. I called his Lieutenant and told him what was going on, he told me he was leaving right away and would meet me there at UNM. So I hit the road and about 2 1/2 hours later after a grounded helicopter and plane with mechanical problems, Nathan was put on another plane to get going. He finally arrived at UNMH at about 12:45 that night. He didn't look so good but at least the charcoal and meds had stopped the diarrhea. Eric, his boss stayed to make sure Nathan was stable and ok and finally hit the road at 2:00 in the morning. The doctor came in and evaluated him and informed us that they wanted to draw labs and check his organ functions and make sure he wasn't in failure. They also wanted to monitor him and make sure he could pee since they had given him 6 bags of fluid and he hadn't peed yet. I think Mathan got about 2 1/2 hours of sleep.



And well, I got none. This was my lovely sleeping accommodations.


I finally climbed in bed with him and shut my eyes for about 45 minutes before the shift change and all the commotion of new staff came in. After labs were reviewed and vitals were monitored, they decided that afternoon that he could be released. He was given instructions to follow up with a "new" physician and have labs rechecked for kidney and liver problems and to come back if he experiences more problems. The doctor told us that if had he taken the medication the rest of that night and morning, that he probably would have experienced liver failure and his dose would have been lethal! We are so lucky that he stopped once the diarrhea came on. I can't tell you how many times we all just do what the doctors tell us but they are human and makes mistakes just as us all, but this mistake almost cost me my husband.


Always be vigilant at medications your putting in your body. A word to all.
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