Saturday, July 31, 2010

Aquarium visit

Today we went to the aquarium. I've been wanting to get out with the boys more since its summer, and we were going to go to the Gateway and play in their fountains. But some pretty scary clouds were coming. So for Tanner's sake, he's terrified of the weather, we decided to do something indoors!
I had to get out of the house after my horrible morning with my adoption news. You can read that post here!
We'd never been to this aquarium before. It was ok, I guess its hard to have a super cool aquarium if your not in a coastal state!









Friday, July 30, 2010

Adoption update

I updated the adoption blog but I'm not going to post it both places because its to depressing!! So go check it out, if you dare!

Thursday, July 29, 2010

Bow making machines!

Yesterday we had a bow making party! I am frantically trying to make bows for the yard sale in a couple of weeks. So we had a little playdate/bow making party!
Poor little Max has an owie on his lip, he ripped it open and it was bleeding like crazy! So momma fashioned this band aid, love it!
His poor little nose, it was a mess!


Jax and Carter slept most of the time. Dang, I wanted some pictures of my little carter!


But I did get a video of Carter trying to walk before he fell asleep. He definitely has a circle fetish, go watch the video on his blog!

video

Tuesday, July 27, 2010

One long day!

Oh today was a dreadfully long day! I left early for his appointment because my ped (whose out of town this week) ordered some labs. She wanted me to get them before his appointment and then cardiology could check them while we were there. Lets just say it was a good thing I left early! While I was driving something just didn't feel right. Then I noticed it was coming from my back, right tire. So I pulled over into a gas station and low and behold, a huge bolt was in my tire! There was no way I could drive and risk blowing my tire on the freeway with just me and Jax. So I ran to Discount tire and told the guy I was in a huge hurry to get to a doctors appointment. After the car sat without being pulled in for 10 mins, I asked the manager if it was faster to fix the tire or replace it. He said cheaper is always better, and I said not when I have an appointment I have to get to! So he made sure my tire was done. I owe those guys some donuts, we were only 5 mins late to our appointment! Although the labs didn't get drawn.
Jax was asleep when I got there but woke as soon as the echo started. And for some reason, he was super cranky. He just cried and cried the whole time! And he cried at our doctors appointment as well.
The results.. his pressures are still up, a little higher than his last echo. But as my dear friend Tammy so eloquently put it, our cardiologist is like Eeyore, slow and indecisive! He doesn't want to do anything right now, but he gave me options of things he could do. The cath lab being one of those. But he can't say exactly what the cath lab would do. Tell us more accurate pressures is all. I don't think he knows what to try next. My plan now is to go back to pulmo and get her advice on all this. Do we treat the PH with another med, or is other lung disease getting worse as well? Cardiology agreed that most patients don't drop their sats with PH unless it gets really bad, so PH is probably not making his sats worse. I just don't know what we are going to do with those lungs of his, they are just so sick! 4 years of torture. 4 years of PH, aspirating, and high pressure support from ventilators takes its toll!
We went for the labs after our appointment. IV team had to come draw him because of his horrible veins. I didn't leave the hospital until 5:30.
So it was quite a long day and I'm exhausted! Here's a couple of pictures I snapped in between his bouts of crying. The quality is horrible!


A couple of people have asked about the yard sale. It will be the 14th of August. If you live in the Salt Lake area and have stuff to donate, or just want to come help out, please email me!

Monday, July 26, 2010

Cardiology tomorrow.

Tomorrow is Jax echo and cardiology appointment. This appointment has my head pounding. This echo will tell if Jax pulmonary hypertension is still high. If not, then we go back to pulmonology and try to find out whats up with Jax lungs. If it is still PH, then we are probably talking about another trip to the cath lab, something I was hoping to avoid this year. One thing that has me a little worried is most people I know don't drop their sats when their pressures are higher, so I'm worried that this is just a progression of lung disease. Not helping matters, yesterday I pulled out Jax medical binder to update it. It hasn't been updated since his last hospital stay in February. When I opened it there was a bright blue paper in the front pocket.

A closer look reveals what it is.

This paper was given to my by the palliative care team in February. After every single medical personal asking me if Jax was a DNR, we decided this was something that needed to be discussed. We sat down with the PICU attending, the palliative care team (which consists of a doctor, nurse, an NP, and social worker) and me and Ray. I can't make any specific plans until a situation presents itself, and it was decided that we would still put full code. Meaning that if me and Ray are not there, CPR would continue until we could get there. I must have stuck this paper in his folder and forgot about it.
We know that Jax time on this earth is limited, that's why we live everyday to the fullest. I just hate being reminded of that time and time again. And his cardiologist is good at reminding me! Why do I stick with him you ask? Here's why... he specializes in PH, so even if I saw another cardiologist, they would send me back to him anyway. Plus all the cardiologists in this clinic have the same mindset and do the same things. So until we move, we live with it.
So fingers crossed for a good appointment tomorrow, and hopefully some answers, and a plan!

Jax playing with his doggy from his buddy Phoenix...ok, so Carter put the doggy in Jax arms, but we could pretend!



Sunday, July 25, 2010

Any excuse to party!

The 24th of July is a Utah holiday. For me its another excuse to have a party! Utah does a huge parade, and my family usually camps out in a fantastic, shady place for watching. This year some went, but a bunch didn't. My mom wasn't going, so I asked the boys, and they didn't care, so we skipped the parade this year. My aunt always has a big family party, and my sister is here from California.
We finally got Jax in the water. He didn't like it as well as I thought. I don't know if it is because its been a long time, I know he doesn't like the sun in his face. So we tried to keep his hat on or Ray blocked the sun from his face!





Jax loved lounging on the grass though. He was nice and cool because he was wet, so he just chilled in the shade!


Oh relaxing!

We got an email from Make a Wish. We filled out the online form and they will send it to our doctor to verify. I have absolutely no idea what to do for him. I looked at all the wishes friends have done. He wouldn't use a playground, and he doesn't understand toys or signs. I think a trip is what we will do. I tried to think of things we think he does enjoy. The water, music, and we think he likes the Disney characters. I think we would do Disney World. If they have someplace in Florida that does the dolphin therapy, I think that would be a great thing for Jax. He likes the water, and I think feeling a dolphin would be fun for him! I also hear Disney World is a fantastic wish. That they treat even the siblings like kings, and the boys definitely deserve some pampering!

Friday, July 23, 2010

A beautiful day

Today I went to sweet Kristen's funeral. Its a beautiful day to celebrate this sweet girl. I had to sit out in the hall of the church, another reason why having a trach is so fun! I had a hard time finding the church so I missed the viewing, but I wanted to make sure Polly knew we were there. Lucky for me, they walked right past us into the chapel. Polly saw me and immediately walked to me and we hugged. Hugged for two moms going through the same things. She looked great, and at peace that her precious daughter is finally pain free.
Jax showed us again that he is the boss, I tried bolus feeds for the first time today after slowly going up. Bad idea, he leaked all the way through his clothes at the funeral. And of course this dumb momma didn't have an extra shirt in the diaper bag. You'd think I'd learn after many leaky accidents! It just made me chuckle, our kids continue to show us that they are in charge! That they are stronger than we could ever be!
Blessings to the Kirton family, and especially my dear friend Polly!!

Wednesday, July 21, 2010

Man is he scrumptious!

Man this boy is scrumptious! Those pinchable cheeks....

That little butt, and super cute thighs (minus the bruises)...

And of course, my favorite, his piggies. I could just eat them up.

I don't know why I like to take pictures of him asleep. I don't know if its because he looks so peaceful...

Or I love how he's all sprawled out. Man he looks comfy!

Thank you everyone for your kind words. And now I want to say, if you follow my blog and I haven't met you, leave a comment! I always love new friends, and would love to check out your blogs. I had a few people leave comments that have been following the blog for a while, and they have adorable DS kido's. Don't be shy!!

Monday, July 19, 2010

A test of strength

My strength is being tested big time right now. I'm just trying to remember that its only a test and that I just need to hang on and get through it!
You know in the last two years I've met a ton of friends online! Most of which I felt instantly connected, and it felt like we'd been friends for years. I've even met a lot of my local friends online. Our Down syndrome association is not all that great, and I don't think I would have met these friends without my blog.
But I've recently had my heart stepped on by someone I thought was a good friend. Len't my shoulder to cry on, only to be lied to and betrayed. It has left me much more wary of people, although I'm trying not to let it, because I know the majority of people are very real, and traveling the same Down syndrome road we are.
I'm feeling a little lonely in the blog world right now also. I know its summer and everyone is playing, but it seems blog traffic is way down, which is just hard because that's where most of my support group is. Which also means fundraising has slowed to nothing. I'm just hoping this last big fundraiser will bring in lots of money, and that getting it out of cyberspace and into the community will help!
You may remember that my garbage disposal died and then my dishwasher died, literally at the same time, and both had to be replaced. Then yesterday, Carter was playing the WII and let go of the remote and hit our 50 inch TV that we've only had a few months. I don't know if the TV can be fixed, but I do know if it can its going to cost a pretty penny! Even though it was an accident, it was kind of that last straw in our house. I can also imagine his terror when it happened, and how scared he was to tell me. I know boys are destructive (I'm dying for some girl naughtiness!) but it seems like the boys don't respect anything. Carter broke his bed weeks after getting it, and I can't get them to keep their room clean to save my life. It always goes back to trashed, so they don't respect anything they have. So right now we've basically taken everything away from them that they love. The WII is put up, Carters bike is put up, they are basically on lock down, and it sucks! We were supposed to go swimming yesterday, and get Jax in the water finally. But after the TV incident, swimming was off the table.
My sweet, messy faced little go getter is not seeming so sweet right now!

Jax labs from Saturday were interesting. His albumen is slowly coming back up so that's good, but his bnp, which looks for heart failure, is up. Normal is 100, his is 400. Its not severe failure, meaning something is structurally wrong with his heart, but it means that something is causing his heart to work harder. My guess is pulmonary hypertension. So we wait for doctors to call today and give their take. He's probably going to want to go back to the cath lab, and I was really hoping we could make it through a year with no surgeries. I guess we'll probably never have that luxury! But this all can't be coming at a worse time, when we are getting ready to leave the country for weeks!
It was actually a huge stress reliever last night to work out in my front yard. Making my new flower beds beautiful. I guess that's a good thing because my backyard is in need of some serious loving. So maybe that's where I'll focus my stresses, and get my yard done at the same time!

Sunday, July 18, 2010

Shower pics

The shower was so much fun yesterday. Thanks to everyone that came, and especially to Jessica for throwing it! Of course, most of the pictures I took were of the cute kids, sorry momma's!

This is sweet Maggie, a new friend that we met for the first time yesterday!

Max eating Carters shoe.


The always adorable Justin!


Jonah, whose rock star mommy threw the shower!

My little Carter.


Baby Kaelyn, the littlest of the group!

I know there's a cute girl in that carseat!

This is beautiful Mariah. She is another one that we met for the first time yesterday. She was so shy, and wanted her picture taken with her mommy.


Jaxson looks like he's giving her the eye..

And she's giving it right back!

Today is the last day you can buy jewelry from Mountain girl silver and have 15% go to our adoption. Also, I am feeling the burnout of the fundraising. Its slowed down a lot, and I'm hoping our yard sale will bring in lots of money because we are getting close to traveling and we haven't raised nearly what the total costs will be! If you live in Utah please let me know if you have anything you want to get rid of for the yard sale. We were just saying too that if we could get 5000 people to donate 1.00, that's half of what we still need! Come on, we are almost there, tell everyone you know to donate 1.00!!

Friday, July 16, 2010

Fun times!

I've been looking for a dresser to put in Makayla's room. I've bought so much clothes for her that I wanted to get them out of my closet and in her room. Plus, with my "girl" shower tomorrow I'll have lots of stuff to put in there. We looked at Babies-r-us, but I couldn't believe how expensive a simple dresser is! I didn't care too much about a changing place because I do have one in Jax room. I also wanted the cherry wood for her furniture, but I found this super cute piece, with a changing pad, in our local classifieds! Plus, her room is pretty dark, so dark furniture might be too much. This is a 600 dollar dresser, and we got it for 170.00! Its no 30.00 yard sale, but its very cute and was very cheap!! Now I can start filling it!


I'm super excited about the shower tomorrow. Everyone is bringing their cute kido's, and a couple of people will be there that I haven't even met in person yet. You better believe I'm taking Ray's nice camera!
This waiting game is a killer! Its way worse than paperwork. At least when I have paperwork to do I feel like I'm contributing. Our paperwork wasn't submitted Thursday, which means it should be submitted next Thursday, and it can take up to two weeks from there for us to find out our date. I'm just a little frustrated because I thought we'd be there by now, and I bought a ton of summer clothes, but by the time we get her home it will be September, and summer will be about over! I want to dress her up in the summer, not the yucky, cold winter!
I know it will all work out, and I just need to be patient. But its hard when you've been waiting for 12 years to have a little girl!!
And remember, Sunday is the last day to order from Mountain girl silver for a portion to be donated to our adoption fund!