Not much here.

Not much going on here this weekend. Yesterday Carter had his flag football game, and me and Ray went out and bought us an eliptical. Yes, by next summer we hope to be bikini skinny (well, maybe not bikini, but you know what I mean) Today we took the boys to see Toy Story/Toy Story 2 in 3D. I'll take any opportunity to see a Disney movie on the big screen again. We wanted to go to the pumpkin patch and let the boys pick pumpkins, but like everything else in Utah, the pumpkin patch is closed on Sundays.

On Friday I realized that we still have 3 weeks before Jaxson's trach surgery. So I called ENT to see if there was any way they could bump someone else so Jax can go sooner. I hope to hear tomorrow if that will happen. It shouldn't be to hard. The majority of things ENT does is tonsils, ear tubes, easy stuff that can be put off for a couple of weeks. Still just trying to prepare. Finding the perfect bed if Jax ends up in our room. I need to find a portable oximeter. The one we have is the huge box that has a battery life of like 2 hours. Until I'm comfortable that Jax doesn't desat with the trach and can handle his secretions, I want an oximeter that is easy to take with us. My homecare company can special order one in, but I don't know if insurance will cover it. I will call our case manager tomorrow and check into that as well. I have found a few online that aren't too expensive. We'll see.

My kids names

Ok Maureen, here ya go, this is how our kids got their names.

Raymond Thomas. Thats an easy one. He was our first boy so he got daddy's name. He is a fourth generation Raymond so when we found out he was a boy, I didn't even fight that it would be Raymond. Thomas came from Thomas trains for me, Tommy Lasorta for daddy. We were trying to find a good middle name and Thomas just sounded good with Raymond. Mondo is a nickname that came from daddy because when he was younger he had a family that called him Mondo, which means big. It was an oxymoron because he was so little.

Tanner Christopher. This is a good one. I have always loved the name Tanner from a hot guy that was on Days of our Lives for a while. I was madly in love with him in high school. Christopher is my brothers name and again just sounded cute with Tanner.

Carter Dee. This is a hilarious story. Carter was a surprise. I found out I was pregnant with him when Tanner was only 8 months old. I freaked out. And then when I found out he was another boy, my pregnancy hormones really went crazy and I wanted nothing to do with him. I didn't care what his name was or anything. I did not want another boy. Period. So daddy came up with a couple of names and he got Carter from his friends dog. (Nice huh?) He asked Mondo which one he liked and he chose Carter. Dee is my fathers middle name.

Jaxson William. I liked Jaxson when I was pregnant with Carter and really wanted it for Carter. But with my veto of another boy fiasco I didn't say anything. So when I found out yet again it was a boy, I immediatly said Jaxson. The spelling took a while to figure out. Daddy liked Jaxon, but I thought looked like it was pronounced jax-on (if you understand what I'm writing) so I had a patient in the hospital that was Jaxston, so I added the s and really liked it. I'm actually surprised at how many compliments that I get with the spelling of his name. People love it. William was Ray's grandfathers middle name.

I'm going to include mine because its a good story. My mom wanted to name me Leslie and my dad wanted to name me Stacey so they put them together and got Lacey. Clever huh?

Ok, I'm tagging some people to do the name game. You have to post how you got your kids names, and then tag more people
1. Michelle Therklesen
2. Heather Needham
3. Stephanie at life and times of a women
4. Emily at we may not have it together
5. Stephanie at Daily smiles
6. Kim at Ree's pieces
7. Kim at Blessed with girls.

Jaxsons story

Because October is Down syndrome awarness month, I thought I would tell our story on how Jax came to our family.
Jaxson was my 4th baby, and he was definitely supposed to be with us. After having 3 boys, I had not planned on getting pregnant again. I wanted to adopt a girl. Because I worked at the childrens hospital with heart babies, I asked Ray if he would ever adopt a baby with heart defects, he thought I was crazy.
For some reason I decided to get pregnant again. I refused the blood test. I knew I would never have an amnio, plus I didn't care if the baby had Down syndrome so I didn't even bother. The funny thing is he was naughty before he was ever born. With my other pregnancies I felt great. I worked up until they were born. I even competed in a dance competion 7 months pregnant with Mondo.
When I was pregnant with Jax, my iron was soo low, and meds would not bring it up. So I felt tired and dizzy the whole pregnancy. I also got some kind of infection the week before he was born and ended up in the hospital recieving 5 bags of fluid. He was born 3 days later. I went into labor in the night, and my water broke shortly after arriving at the hospital. Once my water broke, my babies had a tendancy to come very quickly. He was no exception. Accept that his heartrate would decelerate to dangerously low levels. They did all the typical things, repositioned me, gave me oxygen, and finally tipped my bed so I was on my head! His heartrate would not recover. My doctor had not arrived yet. There were a ton of panicky people in my room. They unlocked my bed and started to wheel me down for a c section when one nurse just happened to check me and I was a 10, so they said lets just push this baby out now. So thats what we did. As soon as they layed him on me I remember looking at him and thinking, "Is this my baby? He looks different". They took him and started to clean him up.

They told me I could hold him for a minute but he was not oxygenating well so they needed to take him to the nursery. When I held him I made the comment that he looked downs. Of course the nurses didn't say anything. After they took him away I told Ray that I thought he had Down syndrome, he was like ok, lets do it. The nurses came back fifteen minutes later and revealed that they thought he had Down syndrome. I said, I know. Really that was it. There was no crying, no feeling that I didn't get my "normal" baby. I don't really know why we didn't have those feelings. Luckily my pediatrician was on that day so she came and talked to us. She explained the heart defect he probably had and thats why he wasn't oxygenating well. Since I worked at the hospital I already knew what AV canal was and had seen it many times. So once again I didn't freak out. The next morning he was taken to the childrens hospital to confirm he had the heart defect.

(side note, I can't believe they didn't see this major heart defect on ultrasound. Thats why we need to push for a fetal echo be done on all babies, so we can find defects that can be fatal if not found soon after birth)

The NICU was actually our easist hospital stay. He did really well, came home with no heart meds (although they were started that next month) He came home with his oxygen and his NG tube. He was in and out of the hospital for the next couple of months, his respitory status just wouldn't stay stable, other than that he was developing like any other DS baby, he smiled and was starting to roll over when he was admitted at 4 months old thus begining our 4 month hell stay.
My little angel baby.

Check this out

Look at these pics, aren't they the cutest? The reason I make these blankies. For the pictures of these sweet warriors that I get in return. We are doing a pretty good job with our huge order we got. Working extra hard to get them all done.

The first of our rememberance blankies are finally done and will be sent out today. I'm quite proud of them, and I can't wait to see the response from the family's of these angels. If you know anyone that has lost a child and would like one, just fill out the regular blankie form and put their birth and death date.

I though since October is Down syndrome awarness month, tomorrow I will post our story about finding out Jax had DS. No we did not know before he was born. Thats all I will say.

He was talking up a storm and being so cute this morning, I had to snap some pics, but he wouldn't hold still for to long, making it quite the struggle to catch his smile.

Allergic reactions, yikes.

Yesterday we found Carters football in Jaxson's lap. Don't know how it got there, but Jax doesn't look to interested in it.
Yesterday I noticed this rash on Jax. Red splotches at first in his creases. His wrists, elbows, shoulders. Also on his neck and ears. It would go away and then come back. It looks like hives, but I can't think of anything new he's getting that he would be reacting to. They started two new meds last week but both have been meds he's been on before. Today I noticed it again all over his arms and legs, and this time it looked like welts. So I called the ped and she told me to come right in before it went away again. She said its definitely an allergic reaction. She talked to cardiology who thinks it may be the enalipril. He was on it before but may have built up an immunity to it and now his body is fighting it. So we stop it for a week and see if the hives go away.
And man you should see the bruise on my arm from were blood was taken. One nurse tried twice to no avail, so she called another nurse. This nurse got it but she jammed the needle in hard. I swear she hit nerves and muscles. My arm was dead when I left and to this day is soo sore with a monsterous bruise. Now I know how my poor baby feels on a regular basis.
Also as of right now we are still scheduled for the 29th. They have nothing available earlier, and god forbid they ask someone who is just scheduled for a T&A or something to push back a couple of weeks for a baby who is in heart failure and has pressures through the roof. We won't even go there again. So it looks like we'll be spending Halloween in the big house. I believe this will be our first halloween locked up. Last year he was discharged a day before Halloween after a 22 day stay because I wanted out. Also two Christmas's ago I took him home at 11 at night Christmas Eve while daddy played Santa. There are sometimes when I know I can watch him just fine at home so I'm not making his brothers suffer on the holidays. We've spent our fair share of holidays in the hospital. Fireworks really do look great from the 3rd floor balcony!

corn mazes and haunted houses

I do love the holiday season. I just hate the snow and the cold. For me it starts with Halloween, and then its nonstop till Christmas.

We've been trying to do stuff with the other boys since they are now off track and don't have school to worry about. And they get so left behind with Jax being in and out of the hospital and so sick. And me and daddy trying to make tough decisions about Jax. I showed the boys pics of some bloggy friends that are trached. To show them what Jax would look like. They didn't even blink. They were like, ok cool, we can deal with that. I don't think anything surprises them anymore, and they know way to much medical stuff for their age's. I went out and bought another thing of rubbermaid drawers to put in Jax closet. I'm preparing for the trach, hoping it will make me feel better about doing it. I also looked at port-a-cribs in case Jax ends up in our room. I just don't know if I'll hear him in the other room with no voice. I heard we don't get nursing care unless they are vented at night and we don't know yet if Jax will need to be vented.

The other day when I was at the craft store I found this cute haunted house that I thought the boys would love to make. Last night they put it together. Of course Tanner didn't help. He still prefers to just play by himself.

Tonight Jax went to play with aunt Krissy while we took the other boys out. We went to dinner at our favorite chinese restaurant, then went to the corn maze. Man I wish I took my camera. We had tons of fun with the boys. There are two mazes, a haunted one and a regular one. Of course we couldn't get the boys in the haunted one. But it didn't matter because toward the end you can hear the chainsaw guy, and we were teasing the boys that he was coming. Plus jumping out of the corn always gets them. (Yes we are horrible parents)

But I snapped some pics of Jax when the boys were putting their haunted house together.

I couldn't resist a cute butt pic when he rolls on his side.

I think I deserve a sticker.

The boys went off track today. They've only been home one day and their already driving me crazy. But tomorrow they get to help clean so I can make them being home useful.

I had my doctors appointment today. I'm so proud of myself for not canceling it. I was very close, but I knew some friends would be quite upset with me if I did. He did a thorough exam since it was my first time in that office. And some blood work. But the good thing is he thinks the headaches and heart palpitations are definitely stress. He put me back on the prozac in hopes that it will ward off the headaches by keeping me calmer. We'll see.

Another good thing is I have had these red dots on my arms and legs that look like petikei, which in children is a sign of luekemia. But he said they were just a skin rash, and just fine. I also could have kissed the resident because he told me I only have to lose about 10 pounds to be in the "normal" range. I feel like its more than that but I'll start with a 10 pound goal. So I think I deserve a sticker for being such a good girl at the doctor.

I also had a looong talk with Jaxsons pulmonologist today. I feel much better and the trach is scheduled for the 29th of October. I will call ENT tomorrow and see if he wants to move it up. I do because I don't want to change my mind. Plus, he'll miss Halloween and I've already bought him a costume. Its not like we've haven't been in the hospital during a holiday before, but it still sucks. She told me this will help him grow and get stronger and then when he gets bigger we can take it out. But he needs it right now for his cardiopulmonary problems. So we do what we always do. We hit it head on!