Thursday, June 4, 2009

WARNING: This is looooooooong

As most of you already know, May has just not been a great month in our little family. We started the month off with me getting my tonsils out, which thankfully wasn't as bad as I had anticipated. My sister-in-law Mindi, and one of my best friends, that I have spoke of in the earlier posts about my tonsils.... was one of my greatest blessings through my whole recovery. She called me first thing in the mornings to see what kind of day it was going to be for me. She took my kids on multiple occasions so I could rest and not be chasing 2 wild kids around. She cleaned, chased cows out of my yard, and did way more than I wanted her too. :) Towards that 2nd week of my recovery, things started to change at her little house as well. Her tough, hard working husband started not feeling well, and that week will forever be imprinted in my mind. Its still amazing to me how quickly and un-expectedly life can slip away right in front of your eyes. Its humbling to accept God's will and have faith that what he wants will be ok for you, even when it hurts terribly. All of our testimonys have been strengthened of this, and we are so grateful for the atonement and the knowledge we have and belief in life after death. Families ARE Forever. What a comfort these things have been in our family.

Jeremy Douglas Matthews

This is the poem that little Morgan (Jeremy's niece) read at the funeral. I think it was written by Grandma Ilene, Cindy Matthews, and Kim Matthews. (sorry if I missed someone)

Dear Daddy,

I really feel quite special that Heavenly Father gave me to you,
To be your little princess, your little Lexi Sue.

I know how much you love me, you told me everyday
Jesus needs your help now but you won’t be far away.

I will always remember the times that we’ve shared
By the things that you taught me I know that you cared.

You worried that the things I was learning were more for a little boy,
But knowing the way you did things will always bring me joy.

I loved to bring my tool box and help you as I could,
Cause now dear daddy I can do things exactly like you would!

The rides we took in the big truck spotting Kenworth’s made us happy,
Cause they’re the best…and we don’t like Peterbilt’s , do we Daddy?

Daddy, thanks for taking me to the Prom when I was only three,
They’re aren’t very many girls who are as lucky as me!

To have your picture taken was not something you liked to do,
But I’m sure glad I have the one of me kissing you.

I know you loved to hear me sing when I climbed up on your knee,
Snuggling close to you will always be my most cherished memory.

“You are my Sunshine” was your favorite song to hear,
And every time I sing it now I’ll feel you very near.

Don’t worry about us Daddy, Mommy and me have got a plan,
We’ll work hard and be real strong because we know we can.

Watch over us Daddy, we’ll be with you someday
Families are Forever..that’s Heavenly Father’s way.

Lexi Sue at the graveside photo courtesy of Kim Matthews

Afterwards Lexi got up and sang in her adorable sweet little voice "You are my Sunshine" just for her Daddy, perfectly. All of us were talking afterwards how amazing it was Lex got up and sang like she was so happy and carefree with no shyness at all, BUT the neatest part was she lookedout above the audience and kept her eyes stationed on the air above all our heads, with a huge grin on her face.

We all believe she was singing right to Jere, and that she could see him plain as day.

On a happier note, look at this sweet, adorable, gorgeous little Garrett. I don't know how his mommy resists giving into his every single request. I know I sure couldn't. :)

I am so glad you guys were able to come up for the reunion.... thanks for letting me hug and squeeze him to pieces.

Update on Kash

First of all Thank you for all your concern, prayers, and thoughts for Kash. It is amazing the community support, phone calls, emails, comments to family and friends that we have recieved about him.
The day of Jeremy's viewing was the long 3 month awaited appointment at Primary Childrens Medical Center in Salt Lake. The reason we were going there is because when I met with my ENT doctor about my tonsils, we took Kash in for a consult as well. The Dr. was such a smart guy that he decided he wanted to test his immune system before he just went in and hacked out his tonsils. Its because of this we found out Kash does have an immune deficientcy, and most likely him being sick every other week has nothing to do with his tonsils. Once we found this out, I scheduled an appointment with an immunologist at Primarys. The week before the appointment, I took Kash to the hospital here for a full blood panel of tests so that when we got to the immunologist there were results for them to look at with us, to discuss what is going on and treatment options. So I take Kash to the lab and I sit for about an hour, because when I hand them the stack of paperwork with the dozens of tests they wanted ran, it made everything more complicated. So about 4 lab techs sat with the tests and had to calculate how much blood they needed to draw from my little 23 pound boy, and what the max. amt was they could draw vs. his weight. Then they had to calculate how much blood each individual test needed and how many vials were needed for each test etc. It made me more and more nervous as I realized how awful this could be for him. Finally they had everything calculated and they open the lab door only to wheel out the cart with a couple handfuls of vials to tell me they want to do it in the ER where they can lay him down on a bed. As we walk to the ER I said a prayer the whole length of the hallway; they pull back a curtain and I sit him on the bed. 4 lab ladies come in and stand around us in this small little curtained room and I just keep waiting for him to totally freak. Kash is not a social kid. He doesn't like being talked to by strangers, looked at by strangers, in the same room as strangers.... let alone pinned to a bed by 4 strangers while they put a needle in his arm and draw 9, yes I said 9 vials of blood. Anyway, I lay him down and he doesn't make a peep. He lays their content as can be, the cute little girl drawing his blood was FABULOUS with him. Her name is Gem and she is an absolute Gem. She did amazing. I sat and talked to him about our dog Jake, and if he wanted an ice cream after he was done, if he wanted to go home and rope with his dad etc. He watched the needle and them changing out the vials the whole time, but was calm and kept smiling and nodding his head and smiling at everything I asked him. It was perfect. Afterwards they gave him this cute little bag with a sucker and then all was well with him. As we were leaving one of the gals dropped a glass vile full of blood on the tile floor. It NEVER broke. My prayers could not have been answered more completely. They were worried I might have to bring him back again for more blood, if they didn't get enough. So surely a broken vile full would have meant doing it all again, and I am sure the 2nd time wouldn't have been as smooth.

Back to the story... sorry. We go to U of U hospital (thats where the dr's office was) in a rush for the day, exhausted, and emotionally drained. We all have to wake up early to get to our appointment, and the kids are both hungry and tired when we get there. We sit in the room... and in walks a lady. NOT the male immunologist I made the appt with 3 months earlier. She was a physicians assistant.... I was TICKED!!!!! I dont' know how they can do that without asking you if that is what you want. I handed her the stack of test results we worked so hard to get again... there are ALERTS by a lot of them and L's meaning low by a lot of them and she barely even looked at them. I handed her the other stack of papers, which was a copy of his chart she hardley skimmed it at all either. All she did was sit and stare at my skinny, every rib showing little boy. She examined him (if that is what you would call it) in like 3 minutes and then she sat and talked to me about his weight and argued with me about how much he gained. He weighed 20 lbs at that office but the week before weighed 24 here at the office he has been weighed at his whole life. She went on and on about him only gaining 2 lbs since he was 1, because he was 18 pds when he turned 1. I kept trying to explain to her that wasn't a fair statement, because she was comparing the 18 pd mark on the scale here to the 20 pd mark on the scale there. Obviously the scales were not measuring the same. I told her that the same scale that showed 18 pds at 1 showed 24 pds a week before. That is a fair assumption, that 6 pds has been gained in a year, not 2 pds in a year. Duh! Anyway she left and came back with the doctor who was in there long enough to tell me my kid had a big head and "boy he really is a skinny little guy" blah blah. Then told us they wanted to run all these tests for his "failure to thrive" and gave me paperwork to walk over to Primarys for those tests.
We got there at 1 and they said they couldn't do the cystic fibrosis test until 3... I explained I would have to drive back down then for that test because we had to be home for a viewing at 5 pm. Thankfully the 1 o clock was late so they fit us in. They did a sweat test on Kash where they shocked his arms for 5 minutes (which he cried the whole time) and then wrapped his arms in all this plastic and stuff to make him sweat. Then we took him to a long hall and tried to have him run up and down with his coat and blanket on to make him sweat for that test. We went back and thankfully again our prayers were answered and there was enough sweat for the test, so we didn't have to re-do it. They drew blood for other tests and we were on our way. In the middle of the funeral luncheon they called and said the Cystic Fibrosis test was negative so that was good, but I didn't feel in my mommy heart thats what it was anyway. Then yesterday morning they called and told me all the other tests were negative as well, such as Ciliac Disease. They are concerned because he isn't making white blood cells, they actually keep decreasing and are lower than they were even the week before. He definately has an in-ability to fight bacterial infections. They referred me to the failure to thrive clinic who called me, and their first appt is the middle of September... wow. They want me to get him into a GI Dr..., I am done for now. Honestly our main concern is his health, of course. The immune thing is not really treatable. There is no medicine to fix it, we hope he will grow out of it. The weight thing is coming along, and I am actually encouraged that he has grown more in the last 2 months than he has in the last year. He is a happy, active, sweet little boy. His gums are healthy, his skin is healthy, his hair is thick and growing... I am not starving him, which is how they treated us. Kade finally TOLD her that we feed him all day long, he is NOT starving and we even are spending hundreds of dollars a month to give him Pediasure as well. That shut her up finally. I know she is just trying to do her job, but that isn't even why we were there. We were there for the immune thing. Sooo the answer to everyones questions, we still don't know what we are doing with Kash. We don't know what is wrong with him, if there is anything physically wrong with him, or where we are going from here. All I know is he is still not going anywhere real public, and will not be in Walmart for some time. Especially after there have been 2 confirmed Swine Flu cases now in Uinta county.

I know this is long. More like looooooong. Thats how it has felt to me too. :)


Practicing for the Testicle Festival
Since we didn't know what was coming up the following week, Kadence had gotten all psyched about participating in the kids events at the annual Testicle Festival. She was planning on toughing it out to ride a sheep, doing the chicken chase, and of course the stick horse barrel racing. Oh well, at least we have the fun memories of practicing.

Getting instruction from her dad

She's turnin' and burnin' now

Look at that SPEED
Ahh the sense of accomplishment :)

Then of course Kash had to give it a try....

8 People Had Somethin' to Say:

Holly said...

Prayers for Kash & Jeremy's family as well!

Jena said...

Wow - so much to take in - you are all in my thoughts and prayers - take care, sweetie!

Heather said...

That was alot to take in- I can't imagine actually going through it all! You sound like you have an amazing support system and aren't we blessed to know Jesus.
So sorry for your family.
We are actually dealing with a death of a friend right now too- it is never an easy thing especially when they die young.
Glad your boy is putting on weight- he looks quite happy and healthy to me ;0)

Caboose said...

I have to say those pictures of Kadence and Kash barrel racing on the stick horse are soooo cute, i died of laughter they are so adorable. We love you all very much, and will have you all in our hearts and prayers. Oh do you know who the doctor is you saw at the U? ~ tiana

The Stevensons said...

Email me sometime Our doctors were really concerned about Taylor's size too. Sometimes they don't understand that some kiddos are just a little smaller :)

Nin said...

nicole you're so sweet!!! thanks for your comment! i would LOVE to get together with you sometime! we really aren't that far apart in age! i have friends who are MUCH older than you!

Dubb Days said...

It is frustrating isn't it when nurses and doctors arent' understanding you!! You are the mom--you know what is going on. Sorry about the death--that poem was absolutely adorable. Your kids are the cutest little things and I wish we could be at the testicle fetivle! Hope all goes well with Kash.

Heidi said...

I'm so sorry about your friend Jeremy. I guess he was needed on the other side. I'm glad you are holding up well - Sorry about all the testing and everything - but it sounds like he's an angel. Glad it wasn't any of the diseases you mentioned.