Kid in Pain – Part II

Almost a month ago I talked about the lessons you learn from your kids. How strong they are. How resilient. S is definitely a tough cookie.

I have to write down this story because I want to remember it in a few years. I want to remember the way I broke down when I was in the waiting room. Remember the way that S cried but ultimately conquered her IV. How she was brave through the entire procedure. I also don’t feel too bad writing about the husband since he doesn’t read this blog. :)

We have been to the doctor, gotten the blood tests, the stool tests. Completed the barium x-ray (which was absolutely no fun – the forced disgusting drink, the bar they press and roll around her tummy to force it through her intestines). We did the follow-up. We agonized over which path to take. With the suggestion of her Dr, we decided on the Endoscopy.

Which was the right path? Go slow and follow what the blood tests are saying (nothing wrong? It’s not Crohn’s disease?) or go fast and do all the tests at once? We were convinced through logic to do the Endoscopy first (and alone!) because while the x-ray showed possible inflammation near the ileocecal valve, the rate of false-positive on the x-ray is high. The blood tests were all normal and the latest tests can detected IBD and they were not detected.

So we get up at 6:30am, hop in the car, and arrive at CHOC. At night it looks beautiful.

We wait and wait. Sign papers. Gasp at the cost. Hope insurance will cover most of it. Walk in back to go to our patient room.

The nurses are absolutely lovely. There was over 10 of them and I was getting confused quickly. They kept introducing themselves, saying hi, and then leaving. They made sure to explain everything.

While I knew that S was getting versed to calm her and propofol to put her into twilight sleep, it seemed rather casual when it was explained the week before. I thought it would be a little cup she would sip. I didn’t really consider that they would be doing an IV, that the anesthesiologist would be there.

They were giving us options on if we wanted S to have the versed. At that point, S piped up with ‘you will be holding my hand through the whole thing right, Mama & Papa?’. At which point I looked at the nurse and smiled and said, ‘We might have a little problem here.’ She marked on the chart a YES for versed.

Two of the cute nurses came in and started explaining how the IV would work. They do this shot of air/numbing solution that was really cool. A drop of blood shows on her skin though and S started freaking out. I was standing by her head, the second nurse sitting next to her holding an iPad with games, and my husband was sitting down next to me. As we were going through it, I looked down a few times and saw his elbows on his knees and him looking upset.

As I was in the middle of calming S, holding her down a bit, I didn’t think much of it. S has my little veins so it was hard to find them and that completely sucks. After they get the IV in, they are adjusting it and I look again to the husband and he looks bad.

I go to sit down next to him and he leans against me and puts his hand on my leg. He starts squeezing his hand on my leg repeatedly. Since S was still alternating between freaking out and playing with the iPad that the nurse was holding up for her, I thought he was just upset. He proceeded to lean against me and put his head behind my back but in-between the chair.

I thought that was weird. Is he crying? Maybe he just doesn’t want to show S that he was upset. His squeezes on my knee were more emphatic.

He leaned back up and I looked over at him. He was gone. He was sitting up but he was not there. I put my hand around his neck to keep him steady realizing that he had passed out from watching the IV. My lovely husband can not deal with needles. When I had my epidural, he did the same thing. (Which I was understandably upset at the time, as well! “You are passing out and I’m the one having the baby?”)

S is sitting on the bed looking at her Papa. “What’s wrong with Papa?” she asks.

“Nothing, sweetie. Papa just doesn’t like needles, you know that.” I say with a confident smile as I’m holding up his head. The nurse ran and got me a wet paper towel. At the same time, she was adjusting S’s IV, and doing what she was supposed to be doing to my daughter.

I desperately ask the nurse for something to drink for him, while I say loudly, “Are you okay?”

The nurse brings a small OJ container. I open it and say sternly, “Honey, I need you to drink this.” I send a quick smile over to Sam. She alternates between gaping at her Papa and playing a game on her iPad.

His eyes are blank. There is no one behind those eyes. He is swaying in his chair, as I’m holding on to his neck to keep him steady. His right arm jerks up and bumps into the open container of juice, almost spilling it on his clothes. I move it away quickly. His arm falls down and he sways his body toward mine and starts moaning over and over again.

S looks over again and freaks out more. “What’s wrong with him? What is he doing?”

I reassure her again, and laugh out loud. “He’s fine, he just fainted.” I turn my eyes over to the nurse and make crazy eyes at her.

I have no idea what to do. My daughter needs me to be calm. My husband is behaving like a stroke victim. This is not happening to me.

The nurse called out to get a gurney for him. She wrapped his finger and got a read on his pulse on the machine that should have been dedicated to my daughter. His pulse appeared on the screen and she reassured me it was normal.

All three of us, the two nurses and I, continue to reassure S that everything is okay. This happens to Dad’s all the time and it’s no big deal. I continue to hold up the husband, while he is moaning. I keep trying to speak sharply to him, in the hopes my voice will make him snap out of it. The whole thing was over five minutes long.

Suddenly, he does register my voice. The light comes back into his eyes, that wonderful spark of intelligence, and I can tell that he’s hearing me. The sweat is rolling off his body and he accepts the glass of juice. The gurney is cancelled. He reassures S that he’s fine. She admonishes him that he shouldn’t be around needles anymore. He laughs.

The new Dr who is performing the procedure walks in. He proceeds to question all of our choices, question her diet, query why we aren’t doing the colonoscopy and endoscopy at the same time, and basically freak me out more. Why aren’t we doing that? Well, our main doctor has a different style and we went with her recommendation. I asked her to do both at the same time. Why didn’t I fight harder for that? But the blood tests were all negative. My Mom doubt is killing me. Was it the right decision? At this point, we feel like he’s going to find nothing.

S gets her shot of versed through the IV and the light in her eyes goes dim. She makes us promise that we will hold her hand the entire time. We tell her that we love her. She grabs our hands and asks us to hold her hand as they continue wheeling her into surgery while we are ushered back in to the waiting room. I’m going to be strong.

We sit down and the husband laughs at himself passing out. I listen to him and think to myself, yes, that was traumatic for him. Don’t make it all about you. I last about two minutes before I break in and explain just HOW. EMOTIONAL. that was for me to have to smile at my daughter while I don’t know what my husband is doing since he was out for five minutes. I break into tears. Usually at these things, I hold it in until it’s all done. It’s out now and maybe that’s better.

Twenty minutes goes by. We watch the video screen where it shows her surgery and when she goes into recovery. The Dr comes out. Everything looked healthy. He took biopsies. There was a spot that might look like something, he is checking it out.

He proceeds to lecture us about diet. An 8 year old should be getting 16 grams of fiber a day. I try not to laugh at him as I tell him she gets over 30 grams. I don’t think he believes me. He talks about motility clinics. With-holding could definitely be a problem, we agree, but the pain she has had in the last six weeks is different than what we have been dealing with (constipation) for the last eight years. He lectures about diet, motility, but agrees we are right in moving to the MRI. He repeats that he simply has a different style than our main Dr.

We leave feeling torn. Do we start seeing the new Dr who seemed very educated? Do we stay with our current Dr for now? Even though she is moving back East in five weeks?

The questions will never end.

I also haven’t even gotten into how she woke up from her twilight sleep screaming about apples and ba-nay-nays, demanding to see the Dr, and being an angry 8yo. I don’t want to see her experimental drunk nights in her teenage years cause I think she’s gonna be interesting… :-)

Beyond this story, the biopsies are not in yet but we decided to forgo the antibiotics for SIBO since it was not proven (taking the new Dr’s advice) and move straight to the MR Enterography. It took a lot of calling, texting, listening to automated phone trees, but we have it scheduled this week. Bright and early again.

I have to wait for the pre-op to call me so I can ask questions but reading online, I’m worried we will have to do another IV. She definitely has to drink something again, which sucks. She also has to go into the tube and not be with us.

Seeing as though she keeps making us promise to hold her hand the whole time… this is definitely going to destroy me soon.

Session Two – Wonders of Water Brownie Girl Scout Meeting

It’s another meeting day! The days… the weeks… they fly by soooo quickly! I’m not sure how it happens…

However, here we are! Here is what I had planned.

Two new songs and two new games for the beginning and/or end.

(Go Bananas, I’m a Little Coconut; Ear & Nose, Rising Circles)

** We sang Go Bananas and the girls had a fun time. We need to go over the different verses again though. They loved the house (Rock the HOUSE! Rock Rock, the HOUSE!) and then we played Ear & Nose. They got the hang of it and the ones who smiled, laughed, or talked got out of the circle until it was just two girls. The rest of them were egging on everyone else but the two girls were not cracking! We quickly declared two winners so we could start our meeting as it was already 10 minutes past the hour. 

Flag, Promise, Law, etc.
Green Tea for a Blue Planet – Mom to bring in electric tea kettle, tea, and snacks.

Brownie Wonders of Water Session 2

(At this point, follow the Adult Handbook and Girl’s Guide book – Here are my notes to myself as I find it hard to scan the book and read paragraphs)

What does ‘Green’ mean when we say Green Tea? (Not just a color but good for the environment). *** The girls knew what green meant and had a good time talking about reuse and recycle and what it means to be green. 

Brownie Wonders of Water Session 2 Tea & Cups

Today we are having ‘Green Tea’ because our goal is to not waste any water. If you drink it all, you won’t be wasting it. By not wasting it, we are also… what? (Using resources wisely)

Who drinks tea?
Where is tea grown? (China, Kenya, Turkey, and Argentina to start)
What continent are those places on? (Asia, Africa, Europe, Southern America)
What is tea used for? (To drink but other people dye cloth with it too) ** They were amazed by this! They were guessing different things but no one guessed cloth. 
People drink it casually but also in ceremonies that follow special rules. ** We had a Mom in the room who pointed out that they would give tea to husbands in a special wedding ceremony and there were all sorts of different customs, etc. 

Who in your family drinks tea? What time of day do they rink it? What kinds of tea do they drink? What kinds have you tried?

Electric Tea kettle

Watching the water as it goes from a liquid to vapor to solid.
What are the main three states of water? Precipitation, Condensation, and Evaporation. ** Um, I really LOVE to read from a book or a paper and the girls knew solid, liquid, vapor… which was technically correct… 

MOM HELPER – To make tea
See if we can watch the kettle to heat the water.
Heating the water is a quick way to demonstrate the change of water from liquid to vapor, which is called evaporation.

Brownie Wonders of Water Session 2 Different Teas

** We had a good time at this spot. The Mom described all the teas she had brought (and she brought a lot!) The tea kettle took a long time to heat up but we were chatting about different things. The book suggested the girls spell Evaporation and Condensation so we did that and we had some brave (and super awesome spellers) get it right. It dragged a littttttle at this part but I need to learn to let go, and let the girls chat and have a little fun rather than trying to talk over them. It’s a REALLY fine line between keeping their interest or letting them have fun in a quiet way and I think went really well. 

<Read the book for notes>
Remind about composting tea bags ** One girl had a compost bin at her house and described it for everyone. 
Do the ice cubes ** Reminding everyone about how we have the solid ice cube turning back into liquid. 
See about holding a mirror in front of the steam to create condensation. ** Kinda forgot about that during the meeting…

So at this point, we went over the kinds of tea and YUM everyone tried their tea! I was very happy we had some brave girls. Some of them didn’t like it but that’s okay. 

Brownie Wonders of Water Session 2 Sugar with your Tea

Loving and Protecting Water – Basically go over the Girl Guide, pg 54 and on. 

We talked last week about what activities we love about water. Some of you mentioned the beach or water parks or showers. Let’s think of reasons you LOVE water. Do you have special reasons for loving water? What are they?

Today we need to think about a water promise. Which line of the Girl Scout Law is about sticking to your promises? (Responsible for what I say and do). Once we come up with our promise, we can think about advocating, which is all about positive talk and action.

This section went well. We had 9 girls so it was a lot quieter. They each had a desk and as they were sitting in a chair, there was less reason to roll around on the floor and be crazy. 

Troop 2908 of Orange County Yorba Linda

Last 15 minutes – Service Project!
Making cat blankets for Gloria’s Pet Rescue.

No time for this! Pushed to next meeting. The Friendship Circle Leader choose ‘Say When’ as our goodbye song and we did our circle and ended the meeting. 

Help Me Pick Glasses!

So I went to get my eyes checked today. Basically because I’m out of contacts. COMPLETELY out of contacts. Dying for contacts…

The big news here is that when he checked my eyes, my eyes have gotten BETTER since the last time. A quarter better… as in crazy stem cells are healing my EYES. How CRAZY is that? My right eye was always 3.75 and my left was 4.0. Now they are 3.5 and 3.75. He checked it twice just to be sure. He didn’t tell me what it was as he was testing me but they clearly are showing better.

Crazy stem cells, right?

So I’ve been hunting glasses for over two years now. Ughhhh what glasses to get? I tried on a bunch and took some selfies. Do you have any suggestions for me??

My big problem now is that I took all these selfies and I have no idea what picture goes to the specific glasses, haha… Help! What should I get?

 

AIMG_8010B
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IMG_8015 D

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FIMG_8018

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IMG_8019

 

HIMG_8020

Stem Cell Replacement Update – 8 Weeks

I wanted to give an update on my progress from my adipose stem cell replacement for Crohn’s Disease and Interstitial Cystitis.

I’m going to be talking about poop, so if you don’t want to read on, please feel free to skip this!

I feel better. I do. It seems incredible that I would just feel better from stem cell replacement but it is actually working. I sometimes think, do I just feel better because I got a good night’s sleep? Because I ate particularly well today? But no, it’s from the stem cells.

Crohn’s Disease: 

I feel about 50% better. My daily, um, movements look completely different. That changed about two days after I had the stem cells injected into my IV and it really hasn’t deviated. I went from unrecognizable but mostly solid movements once a day to rabbit pellet poops that look like recognizable brown poops. I do feel frustrated that it has swung so far in the opposite direction though. It’s more on the constipated side of things and I don’t know how to radically fix it in my diet. Whenever I have larger meals like steak or something fatty, it might resemble a ‘perfect trophy’ the next morning but I can’t duplicate it on a daily basis. Frequently I might eat something (like cheese) or too much of it, and I’ll go multiple times a day but they are still mostly rabbit pellets which is slightly frustrating however it’s a huge change from what it used to be.

I’ve cheated from my very strict SCD diet and had french fries twice and had stuffed mushrooms at nice restaurants where I’m not totally sure of the ingredients and I have been completely fine. I went to Melting Pot two weeks ago and went TOTALLY crazy and had the brownies and cookies dipped in chocolate… It’s been over a year since I have had brownies, ZOMG. They were amazing.

I do not want to go back to eating gluten though. I’m too programmed against it. Especially since we are dealing with my daughter’s issues and trying to figure her out. I just think it causes too many problems.

I can’t decide if I should experiment more with rice or potatoes or other things to try and get my daily movements (sorry!) to a regular person’s normal.

Interstitial Cystitis:

I feel like this needs more time to investigate but the burning I would feel is mostly non-existent. My other problems that would happen from this disease are noticeably better. The problem with this type of thing is that it’s not an every day issue. It takes time to figure out if I’m actually better. I feel better. I don’t have the same things that would pop up but sometimes I have slightly different issues. In most cases, things are good and I keep crossing my fingers.

Second Stem Cell Procedure 

For auto-immune diseases, they recommend that you have 2-4 procedures to continue the healing process. A nurse in the office had fibromyalgia and had three procedures and it’s been about 8 months since she had the first one. She told me today that she doesn’t even remember what her pain felt like. It’s completely disappeared. The first time things got better, the second time it improved more, and by the third her pain is gone.

Today I had my second one. It went great! The office is super fabulous, I love the people there. When I’m being a paranoid freak, they smile and agree with me and pat me on the head and make sure I’m feeling okay despite everything. haha

IV Prepped

Above, my IV is ready to go. My veins are awful, terrible things so it took a few pokes which were fine, and then some bigger pokes which was zomg, it was okay, and then WHEW she got it! Sparing my ugly small disappearing veins, the nurse tried to get my blood (PRP) directly from the line but sadly after they ‘spun it’ and tried to do their magic, it didn’t work. So we had to do another blood draw. She did awesome though. It just took two pokes and some digging, the second poke she got on the outside and had it immediately. I now have some tips for next time when I see someone else!

I actually forget what kind of magic they were doing but something about separating the cells from the blood… or something. They needed my PRP to spin with the stem cells.

 

My Fat Ready to Go

Above, my fat is ready to go. Twenty cc’s of it, which they take only a portion of. I forget why. I probably should have taken notes.

IV Ready to Go

After all the fat was mixed in, and separated, and the stem cells were gathered, and then spun around ready to do their magic work, the IV was inserted.

IV Bag Full of Stem Cells

The IV bag of good stuff.

So the paranoid freak comes into play here. The bag of solution had been sitting under the air conditioning vent, or at least up in the air closer to the cold air. I’m not sure. So they are putting 500 cc’s of liquid into me (or something like that) and after five minutes my hand gets cold.

Then, right under the line is cold. I’m trying to figure out if the small IV tubing is making my hand cold? I’m keeping a close watch on it. Because I am suspicious and paranoid, I think.

Then the cold starts moving up my forearm.

I casually say something… Is it weird my arm is cold? It my arm supposed to be tingling? I may have had her get a hot towel and warm up the IV bag. Plus then put the hot towel on my arm because it was so cold. I may have done that a few times…

Basically, I think I’m super sensitive. I have small veins. I’m super in tune with my body. Plus I have a healthy apprehension and paranoia going on that makes me start freaking out.

Otherwise, it’s all good!

Calculating Stem Cells

 

After my IV was in, she analyzed the stem cells and found that I had 600 million going in! Yea! That’s with less fat and no tumescent mixed in, so apparently that is fantastic.

It’s been a few hours and I feel great. I’m hoping for continued good results from this. :)

Starting the Wonders of Water Brownie Girl Scout Journey

It’s Girl Scout Time! Our first meeting of the year. The new school year, anyway. Last year we voted on Journey’s and the World of Girls won 7 to 5. Five being ‘Wonders of Water’ so we decided to do that one this year. We had fun with the World of Girls, it seemed like a party every meeting where we had fun snack, talked about the different countries, and had parents come in to celebrate their traditions.

The Wonders of Water Brownie Girl Scout Journey seems to be a little more hardcore. The book really goes over some fun science stuff. I have a goal of finishing the Journey before Christmas but as I say that I LAUGH at my ambition.  Well, I will try.

For our first meeting, I decided to bring snack because the lesson plan had this cool chart of all the fruits and their water percentage. I also established a request to the parents doing snack in the future to bring water that is flavored with a fruit or veggie. I’m making cucumber water and I’m excited to see what the girls thing. I told Sammie about the cucumber water and she said, ‘Mom, doesn’t it just taste like regular water?’.

Sigh. Maybe my hopes are too high.

Well, here is my lesson plan… and here is what actually happened!

NEED:
Butcher Paper about 5 feet long – Kristi to get
Markers & Crayons – Eileen to bring
A Pot of water, a small bowl of water, and a washcloth – Kristi to bring
Glass cups to reuse for our beverages each meeting (Recycle!) – Sonya to bring

Reusuable Water Glasses

What I had planned:

SONG TIME – Pick two songs to sing and/or a game.
Hand Game or Rock Paper Scissors Posse.

What really happened: I started the hand game with them as girls were coming in. Every time a girl came in, everyone ran up to hug her, the circle was broken, and it’s REALLY hard to teach this type of game to 10 girls at once. Note to self: Teach it in two smaller groups next time.

The girls were REALLY crazy at this point so I did Rock Paper Scissors Posse so they could scream a bit. They did scream, and that helped get some energy out, but I don’t think they understand it. One problem is that we were uneven so I jumped in to play and I won every time and ended up winning at the end and what kind of fun is that?

Cucumber Water

What I had planned:

Go over Rules and Responsibilities for Troop Meetings. Ask them how the meetings should be run and how they expect everyone to behave.

Talk about service projects. Ask them which ones they want to do. (Indian Xmas bags, due next month; cat blankets; Recycling? Or wait to decide later for a water service project?)

What really happened: This went okay. They were not really stuck on Indian Xmas bags or Recycling, which I was actually thankful for. I didn’t want to do them but I wanted to ASK the girls what they wanted to do, so I’m glad they got to make that decision. They were really excited about cat blankets which is good because I ALREADY SAID WE WOULD DO THEM and had all the blankets. I had Mom’s cutting during  the meeting, thank god for them!

What I had planned:

Snack Time – Ask about first day of school, etc. Have a talk about mean girls.

What really happened: Went about right. We are having some mean girl problems in the group… and it’s always awkward when the mean girls don’t realize they are mean girls but we keep trying to reinforce the message. As I’m talking I’m constantly interrupted with ‘Mrs Davis, can I…’ and I’m so distracted… Thankfully my co-leader is a 1st grade teacher and took this over and explains in much more concise terms what needs to be said.

Talk about the Water Journey – Question: What is their favorite water activity? Go around the circle.

Bring out the fruit – Discuss water content in the fruit.
Watermellon – 92% water           Apples – 84%      Bananas – 74% Cantaloupe – 90%
Grapes – 81%     Oranges – 87%  Pineapple – 87%                Strawberries – 92%

Fruit for Water Journey

What really happened: This went great! I got interrupted again by my daughter who needed medicine before she ate but my Co went around and the girls seemed really into it. Although one girl who was guessing right EACH TIME while I was distracted was looking at my teaching paper… haha. I caught on at the end and gave her THE LOOK.

Talk about Water Around the World – follow the adult how-to guidebook

Troop 2908

Clean water is a right that every person on the planet Earth has.

What is a right?
(Something morally good, justified, or acceptable; entitlement to a specific service or treatment – A right is something that is necessary to have in order to live fully and be healthy and happy.)

What are some other rights that you have?

(Right to life & liberty, freedom, privacy, right to a family, to move around your state & country, of thought, conscience, religion)

So having clean water should be a right that everyone has.

How many people are in the world? 7 Billion.

How many people do NOT have access to clean water? 1 Billion

How does water get dirty?
Is it possible to remove all the trash and pollution from the water?
Can people get sick from drinking dirty water?

Snack Time

What really happened: This went pretty well. The girls really knew what Rights were and some of them had some great points. Others had completely outlandish points which were hysterical and made me laugh. I do love these girls.

Let’s see what it would be like if we didn’t have clean water. Use the pot, bowl, and washcloth and follow the guidebook.

What really happened: More outlandish answers. They didn’t really get it… and really, how can they? They are used to faucets pouring out water. I think the reality of the whole thing is foreign to them. One of them had a great answer of using the small bowl of water to pour on a plant to grow more food and somehow make more water. They are creative, I love it.

Create the Team WOW Map. Have a few girls write Wonders of Water as the heading. Other girls write their names. Other girls write their favorite water activity from our discussion. Everyone contributes to the banner.

Creating Wonders of Water Map

What really happened: This poor banner/map. I should have traced out the words like we did two years ago and they could color them in. It looked like a train wreck, they were writing on both sides. I just shrugged my shoulders at one point. They were happy and coloring, although they were crossing out each others work and scribbling random stuff on there. Oh well.

At that time, I turned on Taylor Swift and started a dance party which they all loved. We played the Human Knot (which they loved and couldn’t solve – one of them must have crossed hands) and then the Friendship Circle Leader choose a song (40 Years on an Iceburg) and then we ended with our friendship circle and we were OUT OF THERE.

Except they all had to run around screaming and using the broom to run into people. So you know, just another regular fun filled meeting.

I’m drinking wine right now, if you couldn’t tell.

What I had planned:

If there is time, talk about rainbows and creating a rainbow. Bring a glass jar with a mirror inside, filled with water. (Kristi to bring.)

What really happened: I was a little sad, the room wasn’t dark it had a skylight! So I tested my water theory at home and it worked but when I tested it before the meeting I could only get a TINY TINY rainbow and I knew that would not keep their attention at all. So I didn’t do this.

Next meeting is in two weeks. Ahhh…. How to better keep them interested? We shall see…

Lessons You Learn From Your Kids

Sam is not doing so well this month. She has always had stomach issues since she was a baby but they are pretty manageable with Miralax, fiber pills, and tums. This summer messed us up a lot because she went off alone, didn’t stick to her diet as much, we were on vacation, etc. etc. etc. Every summer is the same story.

So she hurt. Then I tried gluten free with her for 10 days and she got backed up even worse. A quick trip to the ER, x-rays, some other not so fun stuff that she didn’t appreciate (although it did make her feel better…) resulted in some regularity but still awful stomach pains.

Stomach pains that would make her curl up in a ball. Or if she sat down it hurt, so she would stand up on her bed, or the couch and moan with pain. Visiting the doctor… making a GI appointment… those things take time. Some days are worse than others but every day has been a reminder and a count-down until the GI appointment. We are almost there.

Soccer is a passion of hers. We tried out for the competitive squad this year but didn’t make the team. It was for the best because she got put with her coach last season (whom we love!) and she will play forward almost every quarter each game. She wouldn’t if she had made the squad.

The last few practices have been torture. She wants to play soccer but she hurts. Her chest hurts (Dr says possible Costochondritis which is common, I guess). Her stomach hurts. It hurts to run. She will go and run her heart out and come over during water break and cry. I kept telling her to sit out but “Mom, I love soccer, I just want to play.”

Watching the bravery of my girl is a humbling thing. I just want her to feel better. To feel healthy. So does she and she realizes that there are things she wants to do in life and being sick can’t hold her back.

AngryJulie posted a quote the other day that made me think of my daughter.

“You learn you can do your best even when it’s hard, even when you’re tired and maybe hurting a little bit. It feels good to show some courage.” -Joe Namath

On Saturday we had her soccer game. Actually, first we had Taekwondo. She qualified for her Blue Senior belt.

Then we had soccer. I know. Probably not the best course of action for someone in pain on a constant basis. But we have to continue with life. More important, she wanted to go and do it. We followed the Doctor’s advice of medicine before playing for any inflammation of the chest and went down to the field.

Her coach knew she wasn’t at her best. We decided together that she would play forward (lots of running) for the first quarter and sit out the second for a break. Third quarter she would play sweeper (basically staying back and kicking the ball if it came up to their goal) and they would see how she felt for the forth quarter.

It was 100 degree heat on Saturday. Even the girls who were feeling great were flagging. It was tough. For everyone.

After the first quarter we took her back to our chairs and she cried. She hurt. Everywhere. She may have been more upset because I had my sympathetic and upset face on. Halftime came about and I had to leave to go do my referee duties.

(Ref’ing two games back to back on a 100 degree day sucked. It wasn’t as bad as it sounded and the heat got a little better after 5pm but zomg. Super headache after.)

I was sitting down during my own  halftime to get water when I checked my phone.

She played through the pain and got the reward. This was the first goal she had scored in over a year. She is a tough cookie and amazes me with her courage and awareness.

Only a few more days until the next Doctor. I’m hoping it’s just nothing and we have to somehow be better with her diet. Or that the blood test we took when she was 4, lied about celiac disease. I’m hoping she doesn’t have Crohn’s Disease like I do. Or another similar IBD autoimmune problem. But we will figure it out and fix it. Because all I’m hoping for is for her to feel better.

Quick Girl Scout Games to Play at Troop Meetings

I’m planning our next few Girl Scout meetings. Our first one is next week! We are following the Wonders of Water and I want to go through it in about three months. The last two years our Journey’s have dragged on because we have gotten distracted. So I’m going to try to ‘get er done’!

To do that, I like to either learn a new song or play a new game to keep the girls entertained.

Here are a few games we have either played, or I have on the list to do before meetings start or when they start getting restless.

The Hand Game

Rock Paper Scissors Posse – This looks hilarious. I think the girls would love it

Ride that Pony – More of a song than a game… I’m getting these from the same YouTube account, btw! Great account!

Indian Chief – This is the one I was looking for when I first started hunting! Seems easy enough :)

Categories – I would totally fail this game. I can never think of it!

Undercover

Divide the group into two. One group leaves the room. The second group picks someone and covers them with a blanket. The first group comes back in and has to guess who is missing. We give three chances. Then the groups switch. Our girls really like this game. They try to fool the others by placing more than one under the blanket. They’ve also put a leader under and had two girls hide to fool the others.

Anyone have super fun games to play that are QUIET and don’t have a lot of running?

It’s a New Year

I definitely think there is a good argument to be made for having September be the ‘New Year’ start. We are in the swing of things but it really feels like so many new things are going on. While the summer was busy, we just jammed into crazy town with the kids activities.

The next two months are completely packed with multiple soccer games, taek won do belt tests, Girl Scouts, Boy Scouts, and of course school & homework.

At the same time, Sam is still having tummy problems and we are rotating between the doctors, the ER (yes, that was ugly), the bedroom, the couch, the bathroom, and maybe a specialist coming up. I tried having her go gluten free and it promptly made her so constipated that, yea it was ugly. I still think it can have value but maybe watched a hell of a lot closer with her fiber intake. Although she was eating a TON of veggies and I tried to replace most of it on a gram by gram level.

I’m in a grumpy mood this week. Seeing people comment on the ‘naked photo gate’ this weekend is pissing me off. I had a friend on FB do the victim blaming route and I was tempted to write a whole thing on it, or maybe unfriend her, or take her off my newsfeed because she posts a lot of grumpy stuff on a regular basis. I ended up going back later and saying ‘Dislike’ on it. See? Grumpy. Usually I just smile and sigh and move on.

Is it any wonder that I’m trying to stay away from FB lately? I did end up putting the app back on my phone while on vacation but I’m almost tempted to kick it off again.

On another note, this is my new dance jam. I kept hearing it on Pandora. I was making a new ‘Girl Power’ playlist (don’t laugh) and realized I already had it in my regular music.

Yesterday was Crazy

So yesterday, I pretty much freaked out.

I felt like I was hyperventilating. My daughter was gone and possibly feeling bad. She was missing me. She was lonely. I was in a bad way. Completely freaking out. I think I had 4 glasses of wine. I definitely passed out early.

Today I started my period.

I hate hormones. I don’t usually freak out with hormones. I don’t usually cry. It’s been awhile… I probably cry maybe… once every two years. Maybe a little less than that. Sometimes I”ll have a little tear come to my eye. Like in Fault in our Stars. Just a little teary. Nothing full blown.

I’m pretty much a robot. I repress my feelings. I can’t help it.

I guess yesterday was one of those ‘Sky is Falling’ days, as my friend says.

I am still darn excited to see my baby tomorrow. I think I just have more perspective today.

Note to self: Carefully watch the calendar next year when I plan camp….

 

Sleep Away Camp, Not So Good?

Mommy Alone Time. Who doesn’t love Mommy alone time? Isn’t it the sacred time? The time you never get? The time you would beg, plead, borrow, and steal for?

Well I was wrong. I’m going to say that straight up. I WAS WRONG.

I thought sending my child to sleep away camp would be good for her independence. I thought she would learn from it. That it would be a positive experience that she would remember the rest of her life.

I WAS WRONG.

It’s awful for the Mother. Why didn’t I think that part through? I thought I would be happy she was having fun and learning. Except I’m not. I’m officially freaking out. I want her back. I want her to have all the experiences, learn all the lessons, but do it in one day so that she can be with me.

Going away with Grandparents is completely not the same thing as going away to camp. Just in case you thought differently.

I just got my 8yo back from a 6 day Disney Cruise vacation she took with my Mom and my Sister in Florida. They had a blast. I missed them a bit but it was wonderful having the house to ourselves. We went on a date.. we went out to dinner… we met friends. We got pictures of the kids with the family, having a great time. I trust my own Mama. She knows how to cater to my kid.

Sam Ready for Camp

She is at Girl Scout camp this week… Five whole days. While she was excited, she started crying when we got to the bus. “I don’t want to get on the bus, Mama!” She cried. I shoved her on anyway. “You’ll have fun!” I said. “Mrs Parent Volunteer is on the bus with you, it will be great!” I said.

At the Bus

I got pictures of her getting off the bus (because of said Parent Volunteer).

Stalking Photos

Then I got an email on Tuesday that they were having a great time, and horse back riding twice already from a different Parent Counselor who was staying the whole week.

Waving from the Bus

Hearing that she was having fun… getting updates was actually worse. I don’t think I want to know. I want to imagine that she’s having fun.

So today, the Parent Counselor emailed that she had an ‘I Miss Mommy’ moment. She had to take her aside  and cuddle her. Give her a big hug that she said was from Mommy. I guess she was in a bunk with no friends (or probably not the friend she wanted) so she requested a change today and got it and was happy.

I… I can’t. I can’t EVEN. HELP! Mah Baby! Just give her back to me!

Sam Mama's - Don't Let Your Girls Go To Camp

Why did no one tell me I would feel this way? Or if they did, why didn’t I believe them?

Independence, be dammed. I’ll keep her until she’s 33.

Saturday: Sweet and Suck

 

 

From one of my favorite books, I thought I would do my Sweet and Suck of the day as I was taking a good half hour to cook my bacon, get all the ingredients for an omelette together and mosey around the kitchen. At the same time, my daughter was texting me from my Mom’s phone and my sister was sending me pictures as they gathered at LAX and boarded a plane for Florida.

Sat Suck and Sweet - Airplane & EatsMy suck: My babies are going on vacation without me, flying across the United States and (not really) on their own!

My sweet: I’m having a lazy morning, reading books, messing around, and cooking myself an excellent meal.

Preparing for an excellent staycation while I get to wait to hear all about their adventure when they get back in 6 days.

I’ll take it.

 

Our RV Trip Through Jackson Hole

Okay, back to our RV Trip! We had a loooong day driving from the bottom of Wyoming to the tip top to stop at Jackson Hole for lunch and continue into Yellowstone for dinner. I already posted about beautiful Bear Lake and our drive so here we are at the town square of Jackson Hole.

Or at least here is a cool statue of someone on a horse who is important to Jackson Hole. If you squint you can try to read the text. :)

Jackson Hole Town Sqaure

I harassed a stranger to take a photo and clearly they didn’t worry about shadows.

The Family

Instead, I got Truck to retake the picture of just our family so I could see our faces. Don’t worry, I took a cute one of Truck and Sharon in the light too.

Us and the Kids

The Grand Tetons! (Say it with a french accent, duh.) 

Grand Tetons

So one of the coolest animal sighting out there and we see it 5 minutes past the Yellowstone Park gates. HOW COOL IS THAT?

The Bear

Hey Mr Bear, come back! We want to come pet you.

Just kidding.

The Bear Walking Away

Ahh… our home for the next four days. Love Yellowstone!

Yellowstone River

The next day in our trip we visited the stinky mud pots! More later :)

Day Three – How I’m Feeling From My Stem Cell Procedure

Getting a stem cell procedure is so new and exciting that everyone wants to know how I’m feeling! Well, a few exciting things have happened…

– I’m gaining the ability to read minds
– My invisibility skills are improving
– I’m working on my flying ability but I think I might need a broom…

Ha :) Seriously, I’m still in healing mode so I haven’t felt too much. If I sit up straight , my stomach hurts so I’m lounging and working from the LaZBoy. My compression garment is starting to get annoying but it’s helpful in making sure nothing ‘jiggles’ too dramatically. :) My punctures haven’t drained too much so my awesome nurse said that they probably got most of the liquid out and it’s perfectly normal.

I did have some insomnia last night and a weird anxiety attack. I spoke to the nurse and she said it was normal for some people. The amount of stem cells pushed through me are running through my body and stimulating my adrenal glands, for example, and loss of sleep and anxiety can be a side effect. If it continues, then we can look into other measures but for now I will try to skip my pain meds (honestly, I don’t really need them) and maybe take a Benadryl tonight if I do have problems sleeping.

Right now my head is bothering me more than anything. It started last night and has been a really low throb and around noon started getting worse. Possibly because I got up and went to the library and the store to get up and walk around a bit and maybe I should have just stayed home. :) I wanted to walk a bit to make sure everything is working!

She said that after the first few days I should expect to feel a lot more energized during the day, and hopefully my issues with my auto-immune diseases would get better as well. Since my issues are sporadic and I control most of them with diet anyway, it will be more of monitoring my symptoms for the next few weeks.

Now I’ll go back to gulping more water in the hopes this headache will magically disappear so I don’t have to take anything for it!

My Stem Cell Treatment Update – First Day

Well, my stem cell procedure happened and I’m still alive. Good news, right? Hee.

I spent the night at my Mom’s and woke up, took a shower, and made some eggs. Usually I don’t eat until later but they wanted me to have a full stomach. I took an Ativan at 7:30 and hoped it would calm me. I wasn’t super overly anxious but I could feel that I was internalizing some of my feelings, as I tend to do.

We arrived at 8:30 and they promptly gave me a Percocet. I headed to the bathroom since I had been gulping down the water at a fast rate in prep for my IV and needle stick. If I’m not hydrated, the veins disappear. When I came back they were eying me. I was too perky and not out of it enough! So they handed me another Percocet and I downed that one too.

I then had a shot of Phenergen in my shoulder. It was my choice between the butt and the shoulder. Um, thanks, I’ll take the shoulder.

HOLY HECK that stung. It stung worse after she shot it in and then pressed on it a few times to massage it out. It wasn’t the end of the world though, just a shot. We then walked into the room and I laid down on the bed.

Let me just break in here and say how beautiful Dr. John Laura’s office was. It was right on PCH and the ‘operating room’ looked out into the bay where we could see all the boats and paddle boarders. Everyone was awesome, so helpful, and super nice. We had a visiting Dr. (Simone) from Hawaii to observe the procedure and the rep from the stem cell machine was there (Jeff) to teach a new way of acquiring even more stem cells from the fat they were pulling out. With Jerra and John in there, everyone was having a good time chatting it up.

At this point, they get my IV in. Luckily, Christina got it on the first try (she used to be a pediatric nurse, I believe) although she said my vein blew a bit but she got out in front of it and it worked well. Then they went on a hunt for another vein to take some blood. Oh, it was a hunt. They would spray numbing solution on me, stab me, hunt around… they literally could not see ANY viable vein to grab but they could feel it. At the same time I was incredibly cold (they had a wonky AC, apparently they play wars with the cleaning crew) and I was shaking. I’m assuming half of that was a reaction to the drugs. I probably had 6 blankets piled on me. After a few sticks, Dr. Laura came to the rescue and got to be the ‘hero’ for getting the blood out. Of course, it took forever and a day for the blood to actually COME out. I have no idea why my body does that. Is my heart beating too slowly? I don’t get it.

So, they sterilize my stomach and get me all prepped. As they are doing that, I decide to ask them when I’m supposed to be ‘drowsy’ and ‘out’ and to make sure I don’t feel anything. They all stopped and stared at me for a bit and couldn’t believe I was so ‘aware’ after all the meds I had taken. So I got another shot of Phenergen in my other shoulder.

It didn’t hurt as bad so I think it was taking effect. Looking back later, I think I had a lot of adrenaline I was suppressing and everything just hit me later.

Dr. John Laura made two punctures on either side of my stomach. They stung a little but it wasn’t painful. Then he took something and put it into my stomach. I believe it was the  tumescent liposuction procedure, where it’s tumescent and lidocaine mixture to numb everything up inside. They waited 15 or 20 minutes and then he stuck another tube inside and started sucking everything out.

It was weird. It felt like I had 6 little babies inside me doing a tumbling class. There was pressure and rolling feelings but it wasn’t painful. I was deep breathing but every time I breathed really deep I felt it was worse. I tried to take slow breaths but not deep breaths. As my fat was coming out through the tube, they remarked on the color. Apparently it was the same color as my Mama’s, ha! Did you know that everyone’s fat is a different color? I guess it makes sense as to what you are eating. :) We decided Kesha’s fat would have glitter in it. (Yep, totally drugged at this point, right?)

This was around the point where I felt really relaxed. The florescent lights where beaming down on me and when I squinted you could see other colors. You know how that happens? So I was seeing little pink blobs of light on the ceiling and they were turning into little pink bunnies that would run across the ceiling. Then those bunnies would turn into turtles and run the other way. Or, I would stare at the ceiling and the black and white dots would start moving, just like when you stare at a picture long enough and it swirls in front of you? Yea. That was happening. I remarked on it and Dr. Laura said as long as you don’t see pink elephants you are fine! But I was seeing pink elephants… and I think everyone thought I was kidding!

Finally he was done sucking fat out of me. As for the total, it was small but they got enough. I’m going to guess and say they pulled out 1/4th of a pound. Also, with auto-immune diseases it’s usually best that you do up to four stem cell procedures to ‘heal’ you or put you in remission, apparently. So they say. :)

Here is the beautiful Christina holding my harvested fat that they pulled out with the other liquid.

Kristi & Christina

 

Harvested Fat

Below, she is just processing it. You can see the big silver machine next to her which takes it, spins it, and extracts all the good stem cells. It takes about thirty minutes, I think.

Processing the Fat into Stem Cells

At this point, the rep showed them how to extract stem cells from other liquid that they used to throw away and didn’t think was viable. He was able to get 270 million stem cells out of it, so everyone was very excited. Apparently this is what they can do when they have someone who doesn’t have enough fat to suck out. (People like John – my step-dad – and my Mom don’t have much fat on them so they were trying to EAT fatty foods a few days before their procedure!)

By the way, this whole procedure is called extracting adipose-derived stem cells – or stem cells derived from fat tissue. An interesting article to read is ‘Human adipose tissue is a source of multipotent stem cells’. Or, this one about Adipose Derived Stem Cells for Regenerative Medicine.  

Once my stem cells were spun and extracted they found out that they had acquired 890 million. If you combined that with the 270 million, I had a ton of stem cells! My stem cells were the record for the office so far, and Jeff the rep said it was the highest he had ever seen as well. Counting the numbers made me laugh but they all seemed very impressed.

They got the IV bag ready and inserted it into me and that took about 20 minutes.

At this time, people could have the choice to have them inserted directly into problem areas like joints, problem areas, head, or face. I was a little vain and had them done on my face because I figured… I was there, why not? :) It’s my own stem cells, right!? It took the same amount of time that the IV took so when I was done, they removed everything and patched me up where I had my incision.

They put a compression wrap around my stomach that I will need to keep on for a week or two, maybe longer.

It’s been ten hours and I came home to sleep off and on. I took off the compression wrap to see if my gauze was leaking but it was taped up so well and wasn’t wet, so I just left it alone. It hurt when the wrap was off, so I took a Percocet and went and laid back down.

As for the purpose of this whole thing, they said everyone is different but I should feel improvement in as little as a day. A friend who had it done two months ago had most of his Crohn’s symptoms abating immediately. He was able to eat more things (I can’t wait to eat raw veggies… a salad every day… YUM) and felt much better. After two months, about 25% of his symptoms came back so he may go back in for a second procedure.

I have several random auto-immune problems that go hand in hand with Crohn’s that bother me here and there. It’s really mild though so I’m not expecting to see miracles tomorrow. I am keeping my fingers crossed though that this will be nothing but good for me.

I’ll keep ya posted!

BTW – Here is the list for ‘what else’ stem cells can help cure and heal. It’s not limited to this but it’s a good list:

Degenerative and Debilitating Conditions:

1.         Stem Cell Therapy ALS (Amyotrophic Lateral Sclerosis)

2.         Stem Cell Therapy Alzheimer’s Disease

3.         Stem Cell Therapy Autism

4.         Stem Cell Therapy Cerebral Palsy

5.         Stem Cell Therapy Degenerative Disc Disease

6.         Stem Cell Therapy Erectile Dysfunction

7.         Stem Cell Therapy Glaucoma

8.         Stem Cell Therapy Hearing Loss

9.         Stem Cell Therapy Heart Disease

10.       Stem Cell Therapy Huntington’s Disease

11.       Stem Cell Therapy Kidney Failure

12.       Stem Cell Therapy Liver Disease

13.       Stem Cell Therapy Macular Degeneration

14.       Stem Cell Therapy Muscular Dystrophy

15.       Stem Cell Therapy Optic Nerve Injuries

16.       Stem Cell Therapy Parkinson’s Disease

17.       Stem Cell Therapy Pulmonary Fibrosis, Emphysema, COPD

18.       Stem Cell Therapy Retinitis Pigmentosa

19.       Stem Cell Therapy Spinal Cord Injuries

20.       Stem Cell Therapy Stroke

Autoimmune Conditions:

1.         Stem Cell Treatment Diabetes

2.         Stem Cell Treatment Lupus

3.         Stem Cell Treatment Multiple Sclerosis

4.         Stem Cell Treatment Rheumatoid Arthritis

5.         Stem Cell Treatment Crohn’s Disease

Viral Conditions:

1.         Epstein-Barr

2.         Hepatitis

3.         HIV

Musculoskeletal Injuries:

1.         Stem Cell Therapy Knee Injuries

2.         Stem Cell Therapy Osteoarthritis

3.         Stem Cell Therapy Torn Ligaments and Sports Injuries

Cosmetic and Dermatological:

1.         Stem Cell Therapy Facelift

2.         Stem Cell Therapy for Hair Loss

I’m Getting Stem Cell Treatment Tomorrow

Guys, I’m a little nervous! I’m getting a stem cell treatment tomorrow. It’s the new family business so I’m taking advantage of the family discount and going for it. It’s been known to help auto-immune disease like the ones I have. While I don’t have horrible awful symptoms, they are still there and if anything can help or ‘heal’ it then I’m all for trying it.

So tomorrow I’m going to take my Atavan and my Mom is going to drive me… and I’m going to get “Adipose-Derived Stem Cells for Regenerative Medicine” taken out of me via liposuction (yes, I asked for more to be taken out, haha, no go though), and they will spin all the stem cells with their special machine, and then put them back into me via IV.

My parent have had it done at this new place in Newport Beach. As well as having it done two years ago in China which started the whole thing. So I’m not too worried about it beyond my sickening irritation of having blood drawn, or any needle in me, or the IV being inserted. With the high powered calming drugs being given to me though, I should be good to go.

Since it’s an injection with lipo, it’s supposed to be a week or two recovery time at which point what I will ‘feel’ according to the doctors is.. who knows. Everyone feels something different! Especially since I’m not trying to heal anything specifically active at the moment.

I’m hopeful that I will be able to start having raw veggies soon though. That would be amazing.

Update: Here is how the day went!