Jayden's Birthday

Watch out world!! This 16 year old now has her drivers liscence!! I can't believe I have a 16 year old...where does the time go? Some things I love about my 16 year old Jayden:
1. Her love for her family. As some of you may know Jayden recently connected with her birth dad and his wife and two boys. The love she shows for her sisters and brother and now her new brothers is incredible.
2. Her values. Jayden has thought through many of the trials that face young people today and has already made up her mind on what she will do and won't do. This has made it easier for her to leave a situation when she doesn't feel comfortable. Several times she has called me to tell me to pick her up when the people she is with are doing things she doesn't approve of.
3. I also love the relationship we have and that we can talk somewhat openly about the troubles facing her. I hope she knows that I am here to love her unconditionally and that I will always be her biggest supporter.
4, Her testimony. Jayden has had a rough year with her health but this has helped her to see what is truly important in life. This year has made her rely upon the Lord for so much. It has been amazing to watch her blossom.
5. Her heartfelt prayers. I love listening to her pray about both the small and big things in her life.


While I am talking about Jayden I'll update on her health. We still have no answers and very few leads. Everything we have talked about with the doctor seems to end in a dead end. This is very frustrating for Jayden and actually all of us. We were "treating the symptoms" for awhile and we were ok with that "answer" until treating the symptoms stopped working. Her headaches have gotten worse and her vision continues to go blurry at least weekly. She wakes up every morning with her hands and face numb. She randomly gets sharp nerve pain in different areas of her body at random times of the day. Sometimes these sharp pains last only seconds, sometimes they last for a few hours or a few days or a few weeks. These last few weeks have been especially hard for her and we have changed medications again to see if that will help. So far there has been no relief but we are gradually increasing her dosage. She has been on a similar drug called gabapentin that didn't work very well for her but we are hoping that this drug will be better tolerated. As of now there are no tests to run that haven't already been run, there are no doctors to see that we have not already seen. I am hopeful that one day we will have an answer and that hopefully we don't need to wait too long for those answers!

Coleman

So this fine fellow is the winner of the 2012 Spelling Bee for Rosecrest Elementary!

The best Christmas present EVER

Last year our dog, Maisy died a few days after Christmas. I swore I would never have another dog again. This year every one of the kids had written a dog on their Christmas list. I didn't think much of it at first but I started thinking that given what the kids were going through right now, a puppy that unconditionally loves them might be a good idea. I researched out a few breeds and ended up with this darling Yorkie Poo. She is seriously the sweetest puppy ever. So cuddley and fun!! I fell in love with her the minute I saw her and so did the kids!!

Thanksgiving

I wish I had taken the time to take pictures but I didn't. This Thanksgiving we had dinner at Mark and Holli's. The best part of this Thanksgiving is that Mike and his kids came! It has been about a year since we had seen them so it was so fun to spend a few days with them! We had a big cousin sleepover the night before and I went with Mike and his kids to see a movie on Thanksgiving afternoon. It has been so neat to watch Mike change and be such an awesome uncle and dad. I haven't had a chance to get to really talk with Mike for a few years so it was so wonderful to be able to spend a few days with him!

Halloween 2011

This Halloween the girls both wanted to be Little Red Riding Hood and I'm not sure what we called Coleman....chicken man?

Wow...I'm such a loser at this blogging stuff. I have wonderful ideas and just not enough time to actually get it done! Ill start with what I can remember and work my way back to the present. I hope my kids will understand one day why I didn't document everything the way I wanted too!!
First I'll start with what has been happening in our lives. In October, after much turmoil, Trent and I seperated. It has been an adjustment for everyone but a much needed seperation for everyone. I want to make sure that whatever decision is made (divorce or reuniting) that we know it is the right thing for our family. I don't want to be an "intact" family for the sake of being together. I don't want a "broken" family because I feel like there is something better out there. I want to be able to say at the end of the road that I did what needed to be done and I feel good about my decision. The kids have been going to counseling for a few months to be able to talk about their feelings without hurting my feelings or Trent's feelings. Trent and I have been going to marriage counseling too and what I can say definitively that no matter what our family is the top priority.

Sweetest Boy Ever

I don't blog enough about this sweet boy. He is truly the sweetest boy I have ever met. Let me give you a run down of yesterday with this awesome guy. In the morning I leave at 7:15 to take Jayden to school. I leave the girls home with Coleman and then come back at about 7:35 to finish getting the girls ready and then take Coleman and Chloe to school. I came home at the usual 7:35 to find Coleman unloading the dishwasher. Completely on his own. It was early day out and I am teaching on Friday afternoons so he rides his scooter to my school. He got to my school and then immediately got to work helping set out centers, getting Chloe ready for gymnastics and just being generally helpful. Later on, he was at his friend's house and I was picking him up. He took off my shoe and started to rub my feet!! I mean seriously, what 11 year old boy does that? After we got home, I was watching tv in my room and he came in to ask if I wanted a back rub while I was going to bed. Seriously the sweetest boy ever!!! I think I'll keep him :)

New Day....New Doctor

Today we met with Dr. Zalinski, the neurologist we saw last time Jayden was inpatient at Primary's. I liked him then, and I like him even more after today!
First of all, we didn't realize our appointment was at the Riverton hospital. We drove up to the main campus like we always do and I didn't think twice. We got to the clinic and then they told us that our appointment was at Riverton....oops! They called down to the Riverton clinic to say we were on our way. We got to our appointment about 15 minutes late and Dr. Zalinski came in almost immediately. What I love about him is that he LISTENS to everything I say. With Dr. Sakonju I felt like she had made up her mind about what the problem was long before we even got into the room. Dr. Zalinski listened, and pondered, and asked a few more questions, and listened some more.
We didn't come out with any miraculous answers but I just felt as if he actually heard what we were saying and agreed with us that it wasn't just Jayden being "crazy". He made recommendations but ultimately left the decision up to us and our doctor.
For now....we are going off the trileptal. He said he has never seen success with trileptal for neuropathy. (Nerve problems.) He said there are far better drugs for what we need. He suggested taking lots of time to really research and understand what each drug's effect is on Jayden. He suggested writing down how she is feeling each day (which I pretty much already do.) If after a few weeks there is no change, he suggests putting her back on the amnitriplyne. This drug should help Jaydee in a few different ways. First, it works well for neuropathy, second it works well for gastroparesis, third, it can help with her headache prevention, and last it will make her sleepy for bed. We tried this drug before but always with the combination of multiple other drugs.
If after a few weeks the amnitryptline isn't working enough, he suggested putting her on pregabalin as well. This has the same effect as the gabapentin without the side effects she had before.
He felt like the next step for us is to see a rheumatologist. I have felt that for some time but was told that without a postive test result that indicated this was rheumatology based that the doctor would not see us. Dr. Zalinski assured us that was not the case, and if our doc wouldn't give the referral that he would.
He also told us that the headaches Jaydee has been having he does not believe are migraines but are part of whatever she has. By giving her migraine meds with out the common migraine (and most likely she is having complex migraines) we are putting her at a strong risk for a stroke. That was news to me!! Needless to say,I will not be giving her any maxalt any time soon.
Like I said, nothing fantastic happened today but for once I felt like we were trying something new and that someone was listening to me. I haven't felt that for a few months so it was nice to feel like someone was willing to take another chance on her!

Homecoming Dance

This past weekend was Homecoming. Jayden was asked by a boy named James. Besides being sick, they had a pretty good time. They went to the Asian Star for dinner, then went to the dance, and then went bowling. We only spent 3 full days looking for shoes and 2 full days looking for jewelry but the end product was beautiful!

Mini Cheer camp

One of the greatest things about having a big sister cheerleader is mini cheer! Twice a year each high school does mini cheer camp as a fundraiser. This year Chloe and Annabelle were so excited to be cheering at half time during a televised game!! (Unfortunately, the camera crew didn't pick up on the best part of the football game) My girls banded together and invited a few of their friends to cheer with them. This lead to 14 excited little girls to cheer with Jayden. I think she was the cheerleader who had the most girls signed up for cheer camp. We can't wait to do it again during basketball season!

First Day of School

I can't believe that summer is over! I have had every intention to document our summer fun with this blog but alas I have failed again. One day, I will keep this thing caught up!
Today was a bitter sweet day with the start of school. Although I am excited to have a routine again, I miss having my kids home all the time.

Chloe was super excited to start 2nd grade. She has Mrs. Hardy and I hope it will be a good year for her. Several of her BFF's are in her class so hopefully she won't get into too much trouble for talking!



Coleman started 6th grade and has a great teacher, Mrs. Sharp. Unfortunately, she will be having a baby any day now so he will have a substitute for the next 6 weeks.



Jayden started high school. I'm not sure when I became old enough to have a child who is taking driver's ed!!




While the big kids were at school we were at home baking yummy cookies for them to come home too. I love my Belle!!!


Let's hope this school year is a good one!

San Diego

A few weeks ago we went to Sunny California. We pretty much did nothing but sit on the beach and hang out. We met up with friends and Aunt Sherry. We caught sand crabs and boogie boarded. It was heaven!! While we were there we decided that we need to buy a beach house in Coronado. Any one want to go in with us on it? We will put up the first $100,000 and you all can do the rest ok?

Happy 4th of July

Let the Rivalry Begin

Jayden cheers for Skyline and Coleman plays for Olympus. Looks like we will be rooting for both teams in this house!!

The Birthday Boy

I adore this kid. He is truly the world's best boy. This year Coleman turned 11. We tried to celebrate by going to Seven Peaks but the weather didn't hold up for us. Just about the time we got there the sky opened up and started to dump rain! Fortunately for us, Transformers came out on this same day so we opted to go see that in the dry movie theater instead. Coleman will be having a party with friends next week but we celebrated with Red Robin, Chik fil a, and the movie.
Some things I never want to forget about my 11 year old Coleman:
1. He is the kindest boy around. Truly, he is always thinking of others (with the exception of his little sisters)
2. He has a bit of a temper on him...he likes to slam doors and has been known to throw out the "I hate you" bit before. But this is only when he doesn't feel like he is being listened or understood. We are trying to get Coleman to understand the difference between understanding what he says and agreeing with it. Hard concept sometimes.
3. He LOVES to read books. I am pretty sure that he has read every book in his school library that interests him. He would like to write books someday!
4. He wants to go to MIT and become a reverse engineer. In his spare time he will write books and invent stuff.
5. He has an amazing testimony and absorbs information like a sponge. So many of his teachers at church tell me he asks questions they don't even know the answers too. Many times during scripture study at home he understands what we are reading far better than I do!!
6. He is a great cook and makes many a meal around here. From ramen to eggs to grilled ham and cheese to hamburgers on the grill he loves to cook and share it with those around him.
I love this kid and I'm glad if I only have one boy it's him!! Love you Coleman!

The tonsils

Chloe got her tonsils and adenoids out today as well as some work on her sinuses. She was a trooper and is recovering nicely! Thank you for all the nice gifts and calls!
Before:





After:





Let's hope that she can get better before our trip this next weekend!!

Quick Update

So much to blog...so little time! I am so terrible at keeping things updated. So much for the "journal" experience. A quick medical update since New York...
We had the 22 vials of blood taken and so far, nothing of significance has panned out. We saw our pediatrician who agrees with the auto immune theory. He has been in practice for about 35 years and has seen cases before of people who have symptoms years before any test results come back positive. We have switched our focus from finding answers to managing symptoms. We took her off the gabapentin and amitriptyline and put her back on the trileptal. This has helped with her memory loss and tingling. I think a lot of the newer neurological symptoms we were seeing were more medicine induced than related to her illness. She still gets the sharp shooting pain and then the swollen spots (like on her hand, both feet, the back of her leg, and her forearm) and we haven't been able to find anything to help with that. Both doctors think that it is rheumatically related but there is no test that has confirmed that. We finally found the domperidone in Canada so that it is significantly cheaper. ($38/month vs. $35/week) We switched her nausea meds to the patch so hopefully that will help. She has gained back 11 pounds since we last saw the GI doc which is good! Dr. Sorenson did another bubble test and found that her device is in place with no leaks so we are cleared for 9 more months!! I still need to call about getting the spinal MRI done...I have just been busy and haven't had a chance! We started doing biofeedback therapy and I am interested to see how it goes. The theory behind bio feedback is to retrain your brain. The therapist was telling us about some of her other patients and it was pretty interesting. She has a girl who has excruciating pain in her 3rd toe. This therapist has taught her to block the pain sensor to that toe so that she can't feel it most of the time. Interesting stuff!!!
Jayden has been going to dance and cheer and has done pretty well. She takes it a bit easy and is still really tired when she comes home but we are at least functioning!!! School is out...YAY! Every doctor says that summer is the best time to heal without the stress of everyday life. We are hoping that is true. Between cheer practice, dance performances, Disneyland, Cheer camp, Youth Conference, Girls camp, and family vacations, I hope that we have a chance to catch our breath! Yay for summer!!

New York

New York was a blast! We did lots of shopping and sight seeing and mixed in a few doctor appointments as well. The short story is that we ruled out MS (which is great news) and were sent home with more tests to do in Salt Lake. Our insurance company will pay 100% in Salt Lake and only 70% in New York. The doctors in New York think it is some kind of auto immune problem but narrowing it down will only be done by trial and error. Yesterday we got the blood work done, all 22 vials of blood!! Hopefully we will be able to get the answers we need soon. Jayden was part of a research study while in New York and they would like her to come back to be part of some additional studies in the future. Looks like we will be going back in a few months.

Totally Freaking Out

I am totally freaking out right now!! Not only are we going to New York in 4 days but holy cow there is going to be a big change in our lives soon. I can't really give out the details right now but I am COMPLETELY AMAZED at our Heavenly Father's love for our family at this time. I cannot believe how perfectly everything is falling into place right now, it is unbelievable. I am so grateful for both my answered and unanswered prayers. I am in awe that my Savior is so mindful of my EVERY need. This could not be happening at a better time. Amazing....pretty much sums up this experience!

Love this girl

This girl makes me laugh so much! The other day she was going potty while Trent was in the shower. Trent got out to get dried off and Annabelle says while pointing to his mid section, "Uh Dad....is that your gentleman?" Awesome...