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...

Annabelle's Birthday

This year for her birthday Annabelle only asked for stickers. Totally done!! I get so sick of picking up toys that stickers were fantastic. I did feel bad if that was all she was getting so we decided that we would spend the weekend as a family and rent a hotel room. We spent the weekend swimming in the pool, eating yummy food, and having a great time!

Ski Lessons

This year the kids all started ski/snowboard lessons. They all had such a great time and can't wait to go back next year!

Mr. Bundles

I figured it was time to try to update a bit of what has been going on in our life besides doctors! Our elementary school had their annual production this March. This year's production was "Annie Jr." Coleman played the part of Mr. Bundles and had a great time!! Way to go Coleman...we are so proud of you!!

Our Dislike for Primary Children's

I don't know if I have ever stated this before but I DESPISE PRIMARY CHILDREN'S HOSPITAL! Really, I think the hospital has a purpose for sick kids. Unfortunately for us, Primary Children's has been nothing but a headache for Jayden. Because she doesn't fit into their perfect mold of a known disease, everything she is feeling is dismissed by them. We did the EMG testing by Dr. Sakonju on Thursday. My favorite quote of the day was as she turned to the doctor in training, "Oh...this is real!" Like they had been thinking this whole time that she was just faking it! Unfortunately again, although they saw abnormailities, when they averaged all the tests together, it was "within the realm of normal". Dr. Sakonju told us to follow up with our neurologist. Um...ma'am...that would be you!! She pulled the results again and said that her parasympathetic nervous system is on hyperdrive and her autonomic nervous system is on slow mo. That we just need to get her into bio feedback counseling and then those two systems should correct themselves. Lately, Jayden has been complaining about having a sharp pain in her hand. I noticed that part of her hand was swollen but just kinda put that in the back of my head. She has been complaining about a sharp pain down her leg and I noticed that in the exact spot, her leg is swollen. It is so frustrating when as a mom I KNOW something is wrong but because she doesn't fit all the classic symptoms of any known disease her symptoms are dismissed.
We have tried everything, spending thousands of dollars on accupuncture, holistic doctors, chiropractors, vitamins, as well as any doctor we can get into! We sure are hoping that New York has some answers for us!

New Week, New Hope

This week has gone by in a blur. I was in a meeting on Monday when my phone kept vibrating. I looked at my phone when I was done and I had 5 missed calls. 3 of them were from my friend Chelsea saying CALL ME BACK! So I did. Long story short, she ran into to some people who knew of another story like Jayden. I was able to get the dad's email address and emailed him all week long about our daughters. This other family is convinced that the vaccine gardasil is what caused their daughter's problems. She has been dealing with the same type of stuff for about 2 years and have yet to have any answers. He sent a bunch of links and some more detailed information. It has been eye opening for us to see what little we knew about a vaccine we gave to Jayden thinking it was for her good. Even if Jayden had no symptoms, If i knew then what I know now I never would have gotten the shots. I am not 100% convinced that gardasil is to blame but I am not ruling it out either. I will continue to fight for whatever I can to get her healthy again.
This week we got the results of her gastric emptying test back. Results were not good. If you don't know what happens during a gastric emptying test I will tell you. First you eat radio active eggs. (I know!!) Then they take a picture of your insides one hour later. The average person has 90% of the eggs left at that point. Jayden had 93% left. They take another picture at two hours and the average person has 60% of the eggs left, and Jayden had 79% left. At 4 hours the average person has 10% left and Jayden had 49% left. Basically her stomach is not emptying properly. The diagnosis given by the GI doctor is gastroparesis. This is a fancy word for a paralyzed stomach. The nerves are not telling the stomach to contract so that it can empty correctly. This goes along with the nerve disease theory but we are having an EMG test done tomorrow where they will test the rest of her nervous system.
We will see if that shows anything exciting. We are on some new meds and so far they aren't working yet. We tried to have Jayden go back to school last week but it has been really hard and draining for her. We are putting her back on home school for the rest of the year in hopes that she can get better quicker that way.

A breakthrough

So last weekend I was pretty upset. I felt like we had exhausted all of our resources and yet we still had no answers. After I calmed down, a thought came to me. Back in early December, before we knew about Jayden's ASD doctors had talked about the potential of an MS diagnosis. I researched everything I could about MS and found out that there are 6 Pediatric MS centers in the United States. I emailed every one I could and waited to hear back from them. In late December, I heard back from one and we kept missing communication. The center would call me and leave a message, then I would call back and leave a message. Eventually, I thought her problems were heart related so I just stopped trying to get a hold of anyone. In early February, a different center emailed me back saying they had switched over their email server and just barely retrieved my email. She said to get in contact with her if I still needed assistance. I just felt like her problems were all related to her heart so I didn't respond, but I didn't erase the email. Last weekend I thought, I should just try and see if they have anything to offer us. I emailed her late Friday night and didn't think I would hear anything for awhile. Well, to my surprise the social worker emailed me first thing on Monday morning. I was completely shocked. Whats more, is that within a few hours of that email, I was on the phone with her doing their 1 1/2 hour intake interview. I figured because all her MRI's were coming back clear and no one has mentioned MS for a while I figured they would tell me there was nothing they could do. She told me she would take our information to the board and get back with me on Wednesday. Well Wednesday came and she called me back. The board decided they would like to take on her case and assigned her to a neurologist named....Ann Yeh. (pronounced YAY!) Seriously? Is this a sign? It was all I could do not to burst out in song! Although we are going in through the MS clinic, we are being seen at the Jacob's Neurological Institute. They deal with all sorts or neurological disorders. We scheduled her clinic day to be May 5 and hung up for the day. I started looking at flights and places to stay. Well, Mary, the social worker, called me back on Thursday saying that she had been approached by the research team and they would like to have Jayden be seen in a research study. This means ALL of her testing (new MRI, etc.) is covered by the study. (They are an out of network provider for us, so even though we have met our out of pocket maximum we would still need to pay 20% of all testing while there.) What's more, they are setting us up at the Ronald McDonald house AND getting our flights for $50. I feel like we are finally going to see a neurologist who really wants to get to the bottom of all this AND is skilled in complex cases.
We did see a homeopathy doctor this week as well. He had some pretty interesting things to say and $550 later we felt like he might be onto something. Unfortunately 4 days later we haven't seen any progress. (He told us by day 3 she would be tons better.) We continue to take all the nasty pills and tinctures he gave us but we don't hold out as much hope as we did after leaving his office. He was really cool and did say some pretty cool things. Oh well, at least we have the good news about NY!!

Here we are...again

Well, here we are again at yet another brick wall. We are so upset and puzzled as to what is going on with Jayden. We had another x ray done (to verify that she wasn't constipated) which surprise surprise came back normal. They did a CT scan that showed nothing of significance. They had us talk to psych (saying they felt she was just anxious), neurology (which said they think it might be a nerve problem but follow up in a month or so with the neurologist), GI (which has run every single test they can think of), Rehab (who suggested PT and OT), and we asked to talk to the integrated medical team (a holistic doctor.) They ran some vitamin level tests and did the CT scan and xray, couldn't find anything and sent us on our merry way. In their hurry to send us out the door, we didn't see the integrated medicine team, actually get any PT or OT or even get anything but one dose of the new medicine they prescribed. To say we are frustrated is a bit of an understatement. When I found out they were discharging us without even letting us finish our consults or meet our "pain goals", I called our primary care doctor in tears. He was so wonderful about trying to calm me down and offered a few suggestions. He is talking with some friends of his at the Mayo Clinic in hopes that we can get a consult down there soon. Although I am so beyond frustration with Primary's and the entire 7 month experience, I have hope that we will someday find answers!

Change of Plan

So we've had a bit of a change of plans. After seeing a few surgeons we just haven't felt real good about having the gall bladder out. Most of the surgeons have said that they aren't confident that the gall bladder removal will help the situation. After talking with different people and praying we really felt like that wasn't the solution. So she was admitted to the hospital yesterday with GI, neurology, pysch, cardiology, and the rehab team all on consult. Hopefully we can find some answers. So far no answers yet and we kinda took a step backwards by having to rule out a bunch of silly stuff out again. (Like constipation) Hopefully we can get some answers soon!

The Verdict...I think?

So this week we have seen both our pediatrician and Dr. Karnam (the GI doctor). The consensus of the two is that we should see a surgeon about getting her gall bladder out. They both said it's "conceivable", even with no definitive test results to say that the gall bladder is definitely the cause of her problems. Jayden's HIDA scan results were at 63% which is in the realm of normal for an adult but were low for an adolescent. We switched a few of her meds around, but still no changes in her pain levels. The problem with surgery is obviously her blood thinners so we are still waiting to hear if Dr. Sorensen is willing to allow her to use an injectable blood thinner that is used before surgery. We meet with a surgeon on Monday to talk a bit more about that option. We are a bit leary about if it will work but we are willing to try anything at this point!

Another Day...Another Doctor

I used to read blogs with people who had sick kids and I would think, "what about the rest of their family? Don't they have anything positive or non sick kid related to blog about?" I am eating my thoughts these days. I have so much I would like to blog about but it seems as this has taken over our lives. So much of every part of my day is spent researching, calling new doctors, getting advice from others, or doctor visit, doctor calls, or procedures.
Once we see a new doctor, I leave with a pretty good feeling but then I start to over think things and want answers immediately. I know those answers don't come until after everything else has been eliminated but I would have thought that by now they have done every test imaginable...yet still no answers.
On Thursday we had the endoscopy done. At this visit Jayden was down to 102 pounds. I was hoping that it would show there was an ulcer, they would cauterize it and we would be on our way to getting better. Unfortunately, that was not the case. She did have two small tears in the stomach but he didn't quite classify them as ulcers yet. That would not be the cause of her pain. The only information we gained from the EGD was that her stomach is not emptying properly. The last time she ate was 19 hours before her scope and her stomach was still full of bile. Potentially that could still be a gall bladder function problem, but with the test results being "subjective", it doesn't really make a good case for gall bladder removal. He did take some biopsy's but I am guessing they will come back normal, just like every test or blood test has so far.
I happened to have one of my parents of a child this year be a pediatrician and he suggested that we meet with our pediatrician again. He said that given the little information he has, he would make the assumption that the neurological stuff and the GI stuff are related. There are apparently a few more rare childhood diseases that affect both. His suggestion was to try and get our pediatrician to admit her as an inpatient so that the neurological team and the GI team can "pow wow" together to try to find out what is going on.
To date:
Loss of 32 pounds
Hair falling out
"sallow" skin look
bloated
gets chills, but no fever. Like literally her teeth are chattering.
NONE of the 6 medications they have put her on have worked. Not even the zofran.
Tried reglan, anti spasm medication, dexilant (like a suped up prilosec), anti nausea. None of them work.
Bruising (which is typical for being on blood thinners) but with pea size lumps underneath the bruise. I don't know what that is all about.
Her pain is the worst when she wakes up, and stays for hours.
She has pain as soon as she has eaten about 3 or 4 bites, but forces herself to eat more. Then the pain continues for about an hour after eating.
Pain starts in the upper abdomen and radiates out both sides and through her back. Lately it has even been moving past her belly button to her lower abdomen.
Pretty much if she is awake, she is in pain.
Any other suggestions? I feel like we are trying all we can to get answers and are meeting a brick wall at every place we turn!

Yet Another Update

So much more to blog about...yet this is what is constantly on our mind! Jayden had her surgery this week and everything went as planned. Her surgery was on Tuesday and we arrived at the hospital at 9. We had to get some additional blood tests run for her GI doctor so we went to the lab and then headed to the cath lab. They put in her iv and did some more blood work and then waited for them to call her up. She went into surgery at about 11:30. She was back in in our room at about 12:45. Dr Sorensen came in and talked to us about her surgery. He said he puts one type of device in about 90% of his patients. He put that device in Jayden and then didn't like the way it looked so he pulled it out and put in a helix device. Her hole was about 25 mm, which is just a little over an inch. That is a pretty substantial hole for a little heart! She has been great, a bit disappointed that her bruise isn't bigger and her leg isn't more sore. Now that we have the heart under control, we need to work on her GI problems. She has lost about 30 pounds, 15 within the last 6 weeks. Her hair is falling out, her skin is becoming "sallow", and she feels like she is going to throw up every time she eats. We have been trying to get her in to see a GI doctor and finally got her to see a great one on Monday. He ordered some more tests and we will see what those tests reveal. Hopefully we can get some answers to get her to feel better soon!
I am so grateful to all our friends and family who have been so supportive of us during this time! I can't even begin to list all the nice things people have said and done for us. It is amazing how completely true the poem "Footprints in the Sand" is. I know our Heavenly Father has carried our family through this trying time in our
lives. I know we have and are continuing to learn things that we would have not been able to learn any other way. I am so grateful that He is aware of our every need.

Another Update

I know I have so much more to blog about and eventually I will try to catch up! But for now I will just update on what we have found out this week. We met with the cardiologist, Sherman Sorenson. Before we met with the doc, we had to repeat the bubble test and do some additional testing in his office. The ultrasound guy was awesome and explained everything to Jayden and I. He explained what he was looking for, what different things meant, and showed her where everything was in her heart. When we got to the agitation part, he described what was normal and abnormal before he started the test so we knew what we were looking for. Based on the results of those tests we found out that she does not have a PFO but an ASD. A PFO is something that everyone is born with that is used in utero. Within the first 2 years of life it is supposed to close. If it doesn't, it creates a small "trapdoor" to allow blood clots and unfiltered blood to pass through this hole. An ASD is a hole in the wall between the top two chambers of the heart. This defect allows "dirty" blood to bypass the lungs and go straight into the other chamber of the heart and be recirculated within the blood stream and to the brain. This "dirty" blood causes a host of neurological symptoms and migraines.
There isn't truly a large difference between the two and the surgery is exactly the same. Jayden has a severe ASD but we won't know the exact diameter until surgery. We have tenatively scheduled it for Feb. 22. She will stay overnight in the hospital and come home the next day if all goes well. It is SO nice to know that there is something wrong and she is not just "crazy", and that most if not all of her symptoms should disappear after the closure.
Last night Jayden and I were talking about how grateful we are for this diagnosis. I am sure if we had not been given different the potential MS diagnosis first it would have been much scarier. I know that we have truly been blessed to have gifted doctors who continue to search for answers. I am grateful that we have had this growing experience and everything that we have had to go through to get to this point. (There is no way I would have said the same thing 3 months ago!!)
It seems like surgery is so far away but it doesn't really bother us. We are willing to wait to have a skilled surgeon perform this amazingly simple heart surgery and are looking forward to being able to hopefully get our lives back to normal soon!