I've GOT to get better at this!!!

Once again, it's been WAAAAYY too long since I have written a blog post. Life has just been twisting and turning so much, I can't seem to keep up with it. Plus our laptop was like going at super prehistoric mode, and it drove me nuts to even think about getting on to post.

Hunter played tackle football this year. He did amazing. He played Defensive End, improving each and every week as he played. Plus he looked SOOOO grown up in his uniform!!!

His whole team.....


Rock on....


He will be going to Football Camp in the summer, and is working on his running for next year.

We made it through Halloween, and we all had a blast.

Rhett was a Hamburger...


It's funny, we have fought so hard to get him to eat, and all the sudden he took to hamburgers like crazy. So it was kind of fitting for this stage in his life. He really got into the Trick or Treating, and ran his little heart out going from house to house. He would yell at people not to scare him, then tell him he'd give them "gestion" (indigestion)

Last weekend was my birthday. It was seriously the BEST birthday ever. Andy took me out to dinner and then surpised me at the bowling alley for a birthday party with all my friends. After that, my sister went home to watch my kids, and Andy and I went to the bar, where we all had a blast. Then Saturday we drove to Wendover and met up with Andy's sister and her sweet guy. Sunday we came home, and celebrated with the kids. It was an awesome weekend.

Andy and I are working super hard on our marriage. This time last year I thought we wouldn't make it, and today we are stronger than ever. I fel like marriage is always something you work at, sometimes it's harder than others, but if you keep working a little bit day by day you are sure to exceed. Our 13th anniversary is coming up, I hope to make it another 13 years!!

This guy is the best husband EVER!!!


I also dyed my hair. I'm no longer blonde. EEK!! I've never been dark, and I actually love the color that I am now. It's kind of a mahogany color.

My Top Gun sunglasses. Hehehe.....


I am hoping to get my camera out and take pictures in the next couple of days. Rhett has gotten so big. It's time for pictures for sure!!!

New Meds = New Kid!!!!!

Any of you that have followed our blog for a while, know that we have struggled with Dakota.



Struggled with finding a happy medium for him, as well as for the family. We have tried so hard to get him into the right doctors and therapists, that are willing to help him find himself, as well as help me as a parent deal with his types of disabilities.



It's been a long hard road. He just turned 15, and we have NEVER found a perfect medication for him.



We've learned that stimulants do NOT work for him. He becomes extremely violent and anxious. We've learned that Lamictal causes him to have seizures. We've tried taking him off of medication completely. At which time he was nearly hospitalized. He has been on Risperdal for a VERY long time.



Like since he was 8.



He was on massive amounts of Risperdal. Our new therapist was so not happy with what he was on.



This therapist has listened. Really Listened to what we had to say. He has been interested in what every member of the family was experiencing in regards to Dakota's behaviors. I have explained to him how emotionally draining it is to me, knowing that I can't flip a switch and just make Dakota's life easier.



Because if I could, I would do it in a heart beat.



I've explained how heartbreaking it is to watch Dakota not be able to function with his brothers and sister. To not be able to take him to a big event, like a family reunion and just have a good time. Not getting over stimulated and ending up in a huge meltdown.



After our last session, when I explained the last few weeks, and the paranoia that he was having. The violent outbursts, the thinking that an event that happened over a year ago was happening right now, his therapist decided that the Risperdal was no longer working. (Not that it ever worked anyways.)



So we changed him to Trileptal. It's working. Like TOTALLY working. I have never seen this kid so stinking happy. He is functioning in a typical world. He is interacting with Rhett. Wanting to play with him, taking him on walks, playing games with him, loving him.



It's awesome.



I know it may not last forever. But thankfully he is mostly over his huge growth spurts. I mean the kid is 6ft tall. He can't possibly grow anymore, right?

For now, I am going to take and savor each day that is good. I don't know how long the good days will be here. Just like with Rhett, I don't know how long the healthy days will last. But I do know that these kids mean the world to me.

And I wouldn't trade them for anything.

The Heart of the Matter......

Rhett had a cardiology appointment today.

It left me feeling anxious, confused, and a little angry.

His tricuspid valve is shot. His pulmonary pressures are raised again, and in the words of his cardiologist......"If he were to come down with pneumonia or an upper respiratory infection, he will have a major set back."

Well, pneumonia and Rhett are like best friends. He gets anything and it turns into pneumonia.

So I asked him what we do. As far as his pressures go. We're screwed. We can't up his meds because when they do he has major episodes of bradycardia. (Slow Heart Rate) And when I say slow, I mean slow. Like he totally sits at 45 bpm. For a typical child his age they would call a code at 55 bpm.

There is the chance of trying a different med, but right now, he wants to keep him where he's at and be a little more aggressive with the good ol O2.

Now the valve......that's tricky. They want to wait till he shows a few more symptoms. Like right now, he seems to have enough energy sitting around at home. When he starts school, it might change. His cardio didn't even discuss when to come in next. We were just told that he would probably see us in the fall or winter.

Basically what he says, is until he goes in to heart failure then we just wait. EVEN THOUGH the valve is beyond the whole severe leakage point. Over the last 4 years, I have watched it go down hill with every echo. First it was mild. Then we went to moderate. Then it was severe. Now it's shot.

I'm so not comfortable with this.

So for now we just sit and wait and see what Rhett's body decides to do.

We have had a really good summer. We've done a lot of fun stuff, but I'm ready for the kids to go back.

Dakota will be a sophomore this year, and we are going the self contained classroom route. He's not thrilled, but being mainstream in grade school vs high school is two totally different things. I'm hoping for the best, but preparing for a struggle.

Hunter will be going to Jr High. He'll be in 7th grade. He's super excited, and honestly I'm not worried about him. He makes friends like crazy, and is an easy kid to get along with. He's helped with Rhett alot this summer, and he is currently starting his first year of Tackle Football. He is loving it, and has been practicing hard for the last month. His first game is at the end of this month.

There will totally be pictures.

Chloee is going into the 3rd grade, though she acts like she's going to high school. She's way too smart for her own good. She is reading on a 8th grade level, and working hard. Her favorite books right now are Little House on the Prairie. We were in Target the other day looking for school clothes, and she found a shirt with a baby chick on it wearing glasses, that said "Nerdy Chicks Rule." She fell in love and we had to get it. She's not a nerd, but we just love her to pieces.

Rhett is still going to pre school. I am looking forward to that whole 4 hr break thing. He didn't get any summer school this year and he's been a handful. Adorable, but a handful.

Andy is starting school at UVU on the 25th. He is excited, and is going to be a teacher.

I'm currently working part time from home, and loving it. Although when school starts I will be looking for part time outside of the home. Momma needs a break!!! I had planned on going back to Hollywood Video, but they have since closed all of their stores and gone out of business.

I hope all of our little friends are all doing well. If you have a minute, and could visit sweet Ashley Kate, she needs our prayers. She is a beautiful little girl that has been fighting rejection and recently had to explant her intestines. She is the example of strength if I have ever seen one!

I Think I Raised a Rabbit.......

Rhett's never been real interested in foods. I mean, he loved pedia sure for the longest time.

Now he takes Elecare through his G-tube and it's kinda smells like sweaty socks. I know. Ewwww!!!

He is so cute though. Lately his thing is salads, He LOVES lettuce. He will eat any food of the rabbit variety.

Add a lil dippy sauce, (ranch), and some cheese and crumble up some crackers and he is in pure bliss. He doesn't like meat, and he'll eat bread...and he LOVES spaghetti, but that's pretty much his diet. Gotta love walking into a restaurant and he squeals with delight when they bring out a salad.

He's not so in to junk foods. I he likes a Popsicle every now and again, but for the most part all those foods that should help him GAIN weight, he wants nothing to do with. But it's ok. Momma has tricks up her sleeve to help him gain those pounds that he needs.

He's still so little. I'm lovin it. I love those little cuddly days and I love that he still fits in my lap!!

I see so many days where he is so grown up and doing big kid things, but yet he still has that cuddly little baby part of him. I contribute it to the fact that so much of his little life has been in the hospital and it's what we lived with. The cuddling is all he's known. It makes me so very happy to snuggle.

I often wonder why I was picked to be the mom to such an amazing little boy. His strength is 10x that of which I have ever known. I am so lucky.

Today we drove up the canyon and it was so fun to watch him shake hands and talk to everyone that walked by him. He touches so many people.

If half of the people in the world knew his love there would be a lot less hatred in the world. Many can be so down right mean and nasty. They hide behind the Internet and attempt to make others miserable because the don't love themselves and their lives. It's sad.

As for me...I'm just going to sit back, relax, and enjoy my kids this summer. Gimped up or not......we have plans!!! I am so lucky to make memories with my family!!

And if Rhett grows really long ears and buck teeth.....we all know why!!!!

Up and Down and All Around

It's nearly 3 am and I sit here thinking of the last 4 1/2 years. Contemplating how my life has changed. I have always hid behind a strong front, and I'm sick of being strong. I'm sick of putting on the brave face and putting on my big girl panties to face the day. I just want to lay down and let the world over run me right now.

I know. I'm depressed.

I hate living with my mom. I really do.

No. Like seriously can't stand it.

Like the whole....I.want.to.pull.my.hair.out.and.scream....type of hate.

I know I really don't have a choice in the matter right now. I mean I AM working at it. I have goals and a plan set in motion....but it's not coming soon enough. Lord knows I am not a patient woman when it comes to what I want.

If I want something....I want it now.

I feel like I have lost all control of my life. I have zero privacy. I have to tell my mom where I am coming and going at all times. She pries into my mail, she screams at my kids, and she complains about everything.

You know, kinda like I'm doing right now.........

I usually have my softball to work frustrations out on. However I'm done for the season now.

Seriously.

Memo to me: Old people can't dive into 3rd base like they used to.


Heh.

Screwed up my knee. Tore my meniscus, and who knows what else. I need to have an MRI done and all that fun stuff.

So I'm pretty much laid up at the moment.

Gotsta love getting older.

The kids are all doing well though. Including Trouble Maker Magoo.

Rhett didn't qualify for summer school this year. It's kinda sad. He loves school so much. This also means that he's not getting any type of therapy. Kinda makes me wonder if he really needs it though. He is still walking like a drunk, but that's always been him. Alot of that has to do with his tethered cord, and the damage that it caused before we caught it and it was repaired.


So will PT really help that?? I dunno.

As far as speech goes, he doesn't really qualify for it. The kid talks like a teenage girl on steroids. he yaks our heads off all day long.

In complete sentences......and randomly blurts out MOO COW!!! I think he has a tick with that one. Heeeheeeheee.

Fine motor, I know we could use help in though. He can properly use scissors....which is really scary I might add......and can draw shapes. But his hand eye coordination isn't all that grand. Of course we don't have insurance so we can't go private.

What can ya do.

We are starting a series of Dr. appointments while he is out on summer vacation, so I'm pretty sure we'll have some upcoming surgeries. He needs to have tubes put back in. They fell out and he's had ear infection after ear infection.

We see ENT on Tuesday.

Then in July we go to the Down syndrome clinic, and we are going to discuss potty training. Which he is struggling with. Not that he can't tell us when he needs to go, he is mentally ready but he can't control his bladder. He coughs, sneezes, or laughs and he pees. Might end up seeing a urinologist on that one. It could be a number of things, from as simple as just low muscle tone, to his bladder being damaged from his tethered cord.

In August we see the cardiologist. This is the appointment that keeps me up at nights. I really don't like cardiology appointments. They turn me gray. I know one day they are going to say, yep. Time to replace that valve. I just don't even want to think of it. I hate surgery.

Rhett's favorite book right now is NO DAVID. And of course his favorite page is the one where David runs down the street naked. He just giggles and laughs and falls over when he reads it. It's a pretty simple book, but to give Rhett credit, he has the whole book memorized.

Dakota is going to be in a self contained classroom in High School this upcoming year. It's something I have kind of been pushing for. Full inclusion in grade school VS full inclusion in high school is a totally different story. I know he's upset with us for doing it, but he has struggled SO MUCH in Jr. High, and I feel like he will do so much better in this type of a setting.

He is getting so big. He's 6ft tall, and 180 lbs. His voice is deep now, and he has facial hair. I'm not sure when all of this happened, but I'm pretty sure it was overnight.

Hunter and Chloee are doing well. Hunter is such a big helper. Him and Rhett still have that special bond that is unlike anything I have ever seen before. He is enjoying scouts, and hanging out with his friends this summer. I have kinda let him have run of the town on his bike, and he seems to enjoy that.

Chloee......hmmmm I might have created a monster. She can be a brat. But she is such a good kid. She blew out of second grade like a hurricane. Her reading and reading comprehension skills were crazy. She is functioning on a 5th grade level. She is 8 yrs old and reading things like Little House on the Prairie and Fablehaven. Every Time I go in to check on her when she disappears for a while she has her nose in a book. It's so cute.

She's gotten to be our "informant". I am working really hard on teaching her the difference between something important to come and tell me....(like the boys bloodying each other's noses) and things that don't need to be worried about.......(MOMMMMMMM!!! Dakota farted on hunter!!) Yeah. We have alot to work on.

But she always does what she's told, and she very seldom complains about anything......unless it's her brothers.

Hmmmm normal girl.

We've had a pretty good summer so far.

I took the kids hiking........


To the lake......


We've played in the pool at the house.....


And we even went camping......


To which I might add, that it totally rained that night and **MOM** was the only one that got completely soaked in the tent.

Ahhhh good times good times.

Hope to make lots more summer memories......if only this damned knee will heal.....

I keep saying i'm going to be a better blogger.....

Sometimes life doesn't always go as planned. I think I have more than learned that lesson......and then some. I have ended up moving in with my mom. My credit sucks and it seems that everyone does credit checks before renting these days. It's been interesting......shoving 8 people into a little tiny 3 bedroom house. My bedroom ended up being in the dining room. I have zero privacy. Rhett has no bed except a little foam couch that folds out on the floor. So he generally sleeps with me.

Rhett has been sick again. He has RSV and human metapneumo virus. Which is what he had last month as well. While at the er last night I was able to talk them in to sending us home with the deep suctioning tubing. As long as he stays suctioned his sats stay up enough to stay home. We head back to the Dr tomorrow for a check up to make sure he is still doing well enough to be home. I am so very thankful that God has given me the strength to take care of him at home so that he is not in the hospital where he can catch something else on top of this. Which with his pulmonary hypertension and his chronic lung disease could be tragic for him.

We finally settled with the hospital from when he was overdosed. It's been a long hard road. We didn't get near as much as what we planned. However in the end all that matters is that my child is still here. He is walking and talking and makes me smile every day. He is my little hero wrapped up in one little short 32 lb package.

The other kids are all doing well. They finally have a big yard to play in and fields and swamp to explore in. It's fun to see them doing the same things that I did as a kid in the same place I grew up. I am waiting for the day that they come in and tell me they found a dead muskrat to poke with a stick. Or the day that they go put pennies on the train tracks. I am excited for summer.

I hope all of my bloggy friends are doing well!!!

Tap...Tap....Tap.....Does This Thing Work????

Wow. I have been a no good horrible very bad blogger!!!!

Things have been really super duper stressfull on my end of the world. Somedays I wonder if I am strong enough to go on, only to find that I pick myself up and somehow make it through the day, or hour or even minute for that matter.

My computer blew up with a virus thus I was left without any way to get online other than my phone. However I just treated myself to a new laptop as I will be beginging school shortly and needed one.

Rhett has done really well this winter up until recently. He was admitted the week of Christmas briefly due to Rotovirus. Then about 3 weeks he started in with a cold. It settled in his sinuses. They put him on an antibiotic and the same cold cycled through the whole family, and then he re-caught it. However this time it ended up with a really tight cough, wheezing, and super low oxygen saturation levels.

On Friday we reached the maximum oxygen for our concentrator at home and he was still only in the 80's, so we brought him to the ER here at Primary's, where we have been ever since.

He was admitted that night and I am glad he was. He has been between 3 and 4 liters pretty much the whole time we have been here. He was diagnosed with Human Metapneumovirus. Which is basically the sister virus to RSV....however with this virus it is actually worse. With RSV they know it peaks around day 5. But this virus varies greatly with each child. And children with lung damage or Pulmonary Hypertension such as Rhett tend to struggle with it. And struggle he has.

He is miserable. He has the whole pale look with the black eyes. Yet with all of his steriods and albuterol he is bouncing off the walls at times. He has slowed down on his eating and drinking, but since he has the g-tube we have avoided the whole IV mess. Which is a good thing since he is such a hard poke!!!

As always, Rhett is winning the hearts of everyone around here. Everyone knows him and has to say hi. Even if it's from afar since he has cooties. We are in the surgical unit of all things. They don't want him catching something else on top of this virus as it will push him over the edge. This is something we really don't want. His lungs just won't tolerate it.

Everyone is being super careful and we want out as soon as possible.

The other little birds are doing well. They are hanging out with my sister and having a grand time. Chloee and Hunter are loving school. Dakota is struggling. He was actually suspended 2 weeks ago, and they are talking to moving him from his all inclusive school to a school for children with disabilites. I'm not sure how I feel about this, other than I do know that if he goes to the regular high school next year, they will freaking eat him alive. He is in the 9th grade right now and he just can't handle it.

I am trying to stay as sane as possible and not go gray. I guess they make hair color for that problem though. Hehehe!!

I hope all of our bloggy friends are doing well. I look forward to catching up with all of you!!

Loves and Hugs!!!!