sleepover at my papa's fire station

Papa's grandkid retirement PARTY!!

Friday 13th 2011

My Papa is going to hang up his fire hat after 30 years of service.

On Friday the 13th Papa planned a GRANDKID sleepover at the fire station and we had so much FUN.

We played Xbox {Mark's Bday gift}

chair races in the kitchen, train ride up the elevator to visit all the fire fighters. then we went out into the bay and played a mad game of wiffle Ball(and we play to Win it doesn't matter how old you are)so of course it wouldn't be a SCHUREMAN wiffle ball game if there weren't any tears.

then we played duck duck goose with the little kids, took a break had some ice cream

treats, the older kids and Nana layed outside on the grass and told scary stories because after all it was Friday the 13th. Around Midnight we came inside and got into are sleeping bags and told more stories and laughed and around 1am the engine got a call and so of course we ALL had to run and WISH them luck on the call. The little kids thought that was the BEST thing of the night watching Casey drive away in HIS firetruck with LIGHTS and SIRENS on.

{Life is GOOD}

THANK YOU PAPA for all the Memories we have shared with you at your fire station. We are all going to be sad to see you go but we know you are going to have a WONDERFUL Future ahead with Nana!

bath time

Weston Steven Skousen:

we are learning more and more each day about what makes Weston HAPPY!

Weston's favorite thing to do is take a BATH, if he is having a major sensory overload kind of day I will place him in the bath and he will be happy for hours, one of the reasons Weston loves the bath so much is because he is looking for that DEEP PRESSURE, he sits in the bath and hits the water as HARD as he can. Some other things he loves to do to find that deep pressure is swing in a blanket Mark and I at night place him in a blanket and swing him back and forth.Weston gets deep pressure lotion rubs 2 to 4 times a day. His new thing he is doing which is NOT a GOOD thing is he hits his head on everything and says"PAPA PAPA PAPA" while he is doing it, He now gets to wear a fun little helmet, because he is harming himself! the reason behind doing all these little things each and everyday is to help him not go into a major sensory overload if he does which still happens a lot he stops eating and just cries ALOT! Weston doesn't really have any interest in toys so I try and give him PLAY BATH TIME at least 2 times a day because thats what make him happy! play time= bath time

eating crackers....

{Here is a picture of what Weston's tube looks like, we are now only using this at night While he is sleeping so he get enough calories in for the day}
last week my kids and I headed over to my parents house for some play time with Nana and Papa. We are working on getting Weston use to other people holding him besides Mark and myself, lets just say that this has been a BIG deal! we are still working on it! We were there pretty much all day it was just before dinner time and my dad was holding Weston and he wasn't freaking out, I thought dang I wish I had my camera. I came back into the family room and to my SURPRISE my dad was feeding Weston a cracker, ok for "Normal" kids his age they should be eating table food by now but no not our Weston. He has MAJOR sensory to textures of food. He HATE anything that is dry he will start gagging like crazy if you try and feed him the little fruit puffs or a cracker anything DRY! Well he did it he ate my dad's entire cracker and LOVE it! Has he done it again NO! but hey I will take what I can get! So that was a BIG day for me. I never thought in a million years I would get SOOO excited over one of my kids eating a cracker.

Happy Days!

happy and healthy

I thought it was time for an update and even better a POSITIVE update!

Weston was back in the hospital 2 weeks ago due to gagging so much that he passed out, so after that fun hospital stay the doc. made some changes to his meds and Weston is now doing MUCH MUCH better.

Today I took some pictures of Weston laying in bed with Mark he was SOOO happy! It is so nice to see him happy and he is now crawling all over the place and he even pulled himself up to stand. So we are moving forward which I am very grateful for...

Weston has been such a joy I am GRATEFUL to be called his MOTHER, he has taught me so much in his 1 year of life.

Note from Nana Schureman.........

{I LOVE those sweet DIMPLES}

{this is WESTON STEVEN SKOUSEN Bible, we take it everywhere with us it has all his info from anyone and everyone that has seen him} { This is a pix of his meds he has to take everyday}

This is Nana Sandi reporting, teehee. I've been going to Dr appts with Mark and Annie, listening to Dr.s give long lenghty explanations after many different procedures and Surgeries, and I, along with Annie and Mark, are still looking for answers. What, Why, How Long, When, How come? I've watched Annie and Mark be great parents to not only Weston, but to Graycee and Ryker too! They go along, just like it's any normal day, even if it includes 2 dr appts, 2 therapy sessions, breathing treatments every 4 hours and 3 episodes of Weston's tube having to be opened and drained because he's turning blue from choking (a symptom of one of the surgeries he has had). Graycee tells ME, don't panic.. He's fine. Then she picks him up and tells him, you're going to be okay Cowboy. Wow. So Ive done a lot of research that has helped me come to understand where Weston is and Why? What will happen tomorrow... who the heck knows. But we know what to do today and know what a great joy he is to all our family. To Annie and Mark, Im so proud of both of you and I love you. Hang in there. ANd to all the family and friends that have babysat, brought meals, basically circled your wagons around this sweet family, Thank YOU! OK So here is a summary of my research...This is for you WES! Love, NANA

When you were born, you started throwing up breastmilk, and you cried all the time, so your mom took you to the Dr and they wanted you to be on a very special formula. You tried about 10 different formulas until they found one that worked the best, but you still cried all the time. But you would throw up everything and we did not know why. You were in the hospital about every month, with pnuemonia (which we now know was from aspirating into the lungs when you threw up). It was very hard on your Mom and Dad, because no one could tell them what was going on with you and you would cry til you were exhaused. We did find out you had an immune deficincy. They did DNA testing for Fragile X and Chromosome testing, (those tests came back saying you are perfect!) Each time you were in the hospital, your mom and dad had to leave Graycee and Ryker and take shifts staying with you every day. Your mommy and daddy never left you alone in the hospital. They stayed with you all day and all night, every time you were in the hospital. (Well, one night they let me stay with you because they were both so tired!) I told you stories and even tho you were in a breathing tent, You didn't cry very much that night, When I was telling you a Nana story, you smiled and listened....

The Doctors told us You were in "Failure to Thrive" This was very scary to all of us. This meant that you didn't want to eat anymore because it just hurt to much. They found out you had acid reflux, and you were on medicine for that. But you still cryed all the time. They found out You had a symptom called Strabismus, This is where your eyes would drift cross eyed. We don't really know what it was you were seeing, if you were seeing double or not, but we do know that after surgery on both eyes, you were much happier. (I think you might have been seeing 2 of everything..poor guy!) The surgery worked, but not as well as the Drs had hoped, so you are going to need to go have it done again, (they cut the tendons in the eye muscle, because they are too tight.) You cry a lot less now that your eyes are better!!

After many months of procedures and tests that you had to go thru, the Doctors found out that you have what is called Congenital Tracheomalacia. (here is a link to more info on tracheomalacia http://www.nlm.nih.gov/medlineplus/ency/article/001084.htm) But you had thrown up so much that you had burning in your esophogus and up to the trachea so they had to do something drastic to stop the vomiting. You had a surgery done, called Nissen fundoplication, where they tied off the top part of your stomach so you couldn't throw up anymore.

(link to more info on fundoplication http://en.wikipedia.org/wiki/Nissen_fundoplication

They also put in a feeding tube thru your belly button, it's called a Mickey Button.. Just like the MOUSE!! (I can't wait to take you to meet the mouse!) The mickey button lets your mom open up a tube and hook it up to machine that gives you additional feedings at night time. This is something that we are thinking you will have for about a year. It will come out after we get some fat on you. You are 14 months and you weigh 17 lbs. But that is great, because you were only 13 pounds a few months ago! So with the Fundo, The good news is that you stopped throwing up, but the bad news is that you have been choking alot everyday, and it's gotten so bad, that you are once again scared to eat, because you associate the choking with food. It is really just mucus on the back of the throat or in the tube, but it causes you to become frightened and wretch. Its a hard thing to watch you go thru because you get so scared. But your mom and dad just get down to business and help you out when it's happening. Even Nana and Papa are learning what we can do to help and are taking some classes so we will know what to do. You are a remakable boy Wes...in a 2 month period you learned to crawl, pull yourself up on furniture. You say baba, papa (your favorite word), and today I heard you DADA. You know your name and turn and smile when spoken too and know how to patti cake and just about have it down for giving 5! Graycee and Ryker make you laugh... ALOT! We went to the Dr today, they are going to try some new medicine for the wretching and hopefully that will help. We will take it one day at a time...Stay strong Cowboy. I love you!!!

Weston Birthday

Well I made it to 37 weeks, and then my water began to LEAK which happens with all of my babies. I go in and they said well I am not sure after a long night in the waiting area to see if I was going to be staying or going home Dr. D made the Call for me to stay and have this baby! My contractions were KILLING me, so I was very happy to stay and get the drugs going!! The Doc. came in and broke my water around 6 am and the fun started, around 11 am I started to feel really sick and I know when that happens that we will be having a baby SOON! the Nurse came in and said oh I would say about another hour so Mark said ok I am going to go get a drink I will be back not 3 mins later I said mom something is happing and it is happing FASt, she ran and got a Nurse yelled at Mark you need to get back in here. Well I was right the baby was half way out the nurse said dont push the doc. will be here any min I said I am NOT pushing but Weston had a different plan he was coming with or with out the doc. Dr. D ran in and got ONLY gloves on and he caught Weston!! I felt bad because the doc had on a NICE WHITE Shirt with a tie well lets just say it wasn't white after he caught Weston!

Weston's weight was 5 pound 11 oz he was soo tiny he came out crying! That is the best sound to hear.

I had both my parents and my mother in law in the room when he was born. Yes of course Mark was there as well.

Weston seemed to be doing Awesome the only problem he had was he was throwing up some of his feedings but nothing the docs were to worried about. So we stayed the 2 days then we went home to meet BIG Siter Graycee and Big brother Ryker. They both were in HEaven!

November 30th 2009

November 30th 2009 changed my life forever....

I had been very emotional do to Kaden being in the hospital and not feeling well he past away on November 30th 2009, SO all afternoon I was home alone with Graycee and Ryker your daddy was at work. I remember taking Graycee and Ryker into our room and saying a prayer that Rusty and Jacquie will be able to get through the future, I just lost it I can't even imagine having to bury one of my children. It was like the flood gates opened up! Poor Graycee she kept saying mom dont cry please. Mom did you know that Kaden is in heaven so don't be sad. Well of course I couldn't stop and around 6 pm I called Mark and said you HAVE to come home I am having contractions and I can't stop crying my heart HURTS SOO BAD..... So he did and he took me into the Er and sure enough I was having contractions about every 3 to 4 mins I was ONLY 28 weeks. So they gave me all the drugs to stop this baby from coming. The good thing was I wasn't dilating YET.. So they got me all hooked up with IV's and gave me 3 shots of terbutaline, for some reason that did total oppisite and made my contractions 10 times worse. They finally got me into a room and got me going on Magnesium. I was doing fine then about an hour into getting it I started feeling SOO SICk! And sure enough I started puking and could NOT stop. Well later on I find out that is very common. LUCKY ME!

And to me Surprise around 11 pm that night I was not feeling very good and on some GOOD pain meds, in walks Rusty and Jacquie I was SHOCKED, to this day I am still AMAZED

Nothing really changed for a couple days my contractions weren't slowing down enough to send me home but they weren't making me dilate so that was GOOD news! Finally after a week and half of being in the hospital we finally got my contractions under control so I could go home to be on complete bed rest. Now how does that happen when you have 2 other kids at home. I was lucky to have A LOT of help from my family.

They sent me home on medication called Nifedipine to help keep the contractions down. I was on bed rest a weekly doc. apts with Doc, D every week. Stress tests and tests to see if I would go into labor with in the next week and LOTS of Ultra sounds to check his fluid. Well I made it to 37 weeks....

Labor story coming next!

room 619

Yes like the title says room 619, Weston is back in the hospital {room 619} hey at least he didn't spend his first birthday in the hospital.{ HIs Birthday was spent at the zoo with Family}

Cardon's Children Hospital is becoming are home away from home. I am grateful for the doc. and the staff here they are amazing,

We brought Weston in because he had a temp of a 102 and we could get it to go down we took him in to see his regular doc she asked us to go straight to the hospital she wanted blood work done on him ASAP to make sure there was no infection do to Surgery he had on the 17th.

We got to the hospital and it took them 5 time before they got an IV in, finally they got it in his foot. They did a bunch of labs and tested him for RSV and they also did a cat scan to see if there was any infection due to surgery. Everything came back looking GREAT EXCEPT he has RSV. Poor Weston has now had RSV 2 times.

Luckily the Doc came in this morning and said we can go HOME!! He wants us to get him out of the hospital he is afraid that with Weston having Lung problems not being able to fight infection he is worried he may get something eles on top of RSV do to being in the hospital.

So we are going home I am so EXCITED!! I want to stay away from here for a LONG LONG TIME!

Mark and I are grateful it is just RSV and not something Major, I thought for sure they were going to tell us his white blood count was out of control. But NOPE they looked GREAT!

But of course I always have to take pictures to pass the time so here are some fun pix I got this morning !!

*****************you got to LOVE the bags under my eyes*******
**** YOU HAVE TO LOVE Weston's eye that is crossed****?!?!?!
**WESTON isn't very happy unless his DADDY is holding him******

What a YEAR.... Jan.28th 2010

I am so glad 2010 is over this past year has been a very hard year for our entire family, As you know Weston has had a lot of medical problems so for his 1st birthday I wanted to start a blog for my friends and family so they could see how Weston is doing through out 2011. I also wanted to make a book for him so when he gets older he will see all he went through during his first year. So WELCOME and I hope you enjoy the roller coaster.

HAPPY BIRTHDAY COWBOY!

*** Graycee can make Weston laugh like know one eles can*** He LOVES her!