Tuesday, June 29, 2010

A good day

Today has been a good day! Finally!
Jax color seems to be a bit better. Who knows what that boy was doing, but with such precarious health we have to be extra careful when he seems "off". My ped called today from home to check on him. She is the only regret I have about moving out of state. I absolutely love her, and she knows Jax just about as well as I do! She'll be getting a lot of phone calls from our new ped after we move, thats for sure!
If you didn't see on the adoption blog, I talked to my social worker today and she agreed to take the annuity off the home study. This is good news because that was the one document we were having problems getting notarized, now I don't even have to worry about it! So tomorrow I go pick up my adjusted home study, and off to the capital to have the whole dossier apostilled. Then it will be sent off to Eastern Europe!
Then this weekend we go just an hour away from home, but it feels like a lifetime away. Up in the beautiful mountains to our cute little condo. Its about the same distance to the hospital as our house so I feel comfortable that we can get Jax there quick if we need to.
My mom and aunt both have a time share condo that we always get over the 4th of July weekend. My family will be there, and Ray doesn't have to be back to work until Tuesday. So adoption paperwork is done and we can totally relax!

So grateful to have this special boy in my life!

Computer problems

My computer is still acting up. Everything I can do I'm doing from my phone, which means going to other blogs is impossible. So if it seems like I'm ignoring you, I promise its not on purpose. I'm ready to throw the computer out the window. Its only my internet, it freezes, but I'm still able to move my mouse around. I called Comcast, and she said its internet explorer, and that I should reinstall it or switch to another browser. But she had no idea how to do that! Ok, you installed this when you did my internet, so shouldn't you fix it?
I have no idea how to fix it, and if I take it to the Geek Squad they charge like 80 bucks just to look at it!

Oh, and another thing, now my dishwasher is dead! Fate must know its getting closer to when we travel to get Makayla, because he's throwing all kinds of expensive things at us!

Sunday, June 27, 2010

Feeling better

Pictures: The top is my trash pile of paperwork that wasn't right or needed to be redone. Jax chillin in his seat. In the last two, the boys had slept up in the family room. When I brought Jax in they pulled him up in bed with them.
I'm feeling much better. I talked to the girl over all of the adoptions in Makayla's country, and she said my dossier can still be translated while the SDA is closed. I didn't know that, the other girl made it sound like I didn't even need to worry about sending my dossier until the 14th. So we may only be delayed a week, if that. Crisis averted! Although we may still be gone when the boys start school, which would really suck! And my nurse friend may not be able to stay with them the whole time because he starts school as well. We may have multiple people watching the boys while we are gone. I have had many people offer to take Jax, to even learn how to take care of him so they can help us. Thank you to all of my great friends!
I'm a little concerned about Jax. Its just that mommy feeling we all have. His color is yucky. In his blue bedroom he looks really blue! And he is much more lethargic than normal. Nobody would even notice these changes if you weren't with him every day. They are very subtle changes. But changes that can be big things. His oxygen needs have not gone up yet, although he plummets his sats when you take his oxygen off even for a second. So it may be a respiratory thing brewing, or it may be something much more nasty, and harder to find. Like a blood clot in his lungs or heart. When we tried to redo labs Friday they were unable to get blood. Of course! My ped is against putting a port in Jax, she thinks the infection risk is to high. But what else do you do when you have zero access? So tomorrow may bring tests to figure out if something is going on. We are going up to our condo in Park City next weekend for the 4th. And although its only an hour away from home, and probably the same distance to the hospital, I want everything figured out before we go up there!

Friday, June 25, 2010

A short break

My mind is fried today. I'm not sure if I should scream or sob, or maybe just punch a wall! My dossier (paperwork) is done except for one measly paper. I was told I could still send in my dossier for them to start translating while we wait for that one paper. Well I just found out today that her country is taking a break to catch up on the paperwork they already have so they are not accepting dossiers July 1-15. Which means we won't be submitted until after the 15th. I'm crushed. At this rate we may not even get to her before her 1st birthday, and I was ready to start planning a big birthday bash for her when we got home! So much for the summer clothes I bought her, by the time she comes home it will be fall. My nurse that was going to come and stay with the boys starts school the end of August. He may be able to help here and there, but now I have to figure out who can watch Jax for that length of time. I guess things were just going too good with this adoption, and the s*#t had to hit the fan at some point.
I'm taking a short break from blogging. I need to clear my head. It probably will just be the weekend, which I guess is not much of a break. But I need to save your ears from listening to me complain, so my hubby will be the lucky receiver of the complaining this weekend. My sink is torn apart so we can replace the garbage disposal, and my computer is acting up. I can usually get on but if I try to open up a new window, like I do when I check friends blogs, it freezes. I don't know whats wrong with it and I don't have the energy to fight it.
You can still order bows, and still buy tickets for the MP3 player, that closes on the 30th and we draw the name on the 1st.
Thank you to everyone to be so supportive and such good friends to me!

Thursday, June 24, 2010

Toy Story 3

I'm counting the days until Saturday, because Saturday we go see Toy Story 3 with Hopekids. Toy Story is one of my favorite Disney movies, and I love that Hopekids provides the opportunity to see all the kid movies. A chance for kids with special needs and their siblings to get away for a while! Plus this week has been really rough! Monday I had the last few things that needed to be notarized, thinking I could have them done in a jiffy and submitted Tuesday. Then Tuesday it was Wednesday, and yesterday I was so frustrated I wanted to tear up all the paperwork! Needless to say its still not done. I'm praying, praying that today it will be done, and then we just have to wait for our date to be in her country. Oh and last minute fundraising because I'm realizing how fast its coming up!
Yesterday my garbage disposal died. Ray tried to fix it to no avail, so now we need to go get a new garbage disposal. I have no idea how much they cost! This morning I woke up to ants in my kitchen! Luckily we bought ant spray the other day because I noticed them outside in the front yard. But they found their way into my seriously neglected kitchen! The kitchen that hasn't been swept in a while. The kitchen that probably won't be cleaned until I get this paperwork done!
I also found out my great aunt was given the wrong medication at her elderly home and is in the ICU! That makes me so mad. I know we are all human, but do health care workers ever take the care to double check things? I sure see an awful lot of mistakes. You know how closely we feel like we need to watch our children in the hospital because of mistakes. My sister told me that my aunt had cried to her sister that she hated this home. That makes me so sad! I just want to bring her into my home. I'll make sure she gets the right meds! I mean, where are her children right now? Why aren't they stepping up to help their mom?
Anyway, if you have any last minute fundraising ideas, please email me. Remember we still have the MP3 giveaway going on. We will draw the winner for that on the 30th. So go buy tickets now! Also the super cute bow fundraiser. Just click here to order some for a little girl you know! If you would just like to donate, click here to make a tax deductible donation through Reeces Rainbow.
And if you haven't emailed me and want to come to the "girl" shower. Let me know and I'll get you an invite!

Tuesday, June 22, 2010

Todays the day

You know I love having a blog! Its my diary, my place were I can scream and yell, and if you don't want to hear if, you can just click off! And when something exciting happens, I have so many friends to tell the good news to!
Things have been going so great lately. We had a great time with family and friends in California! And although the paperwork still makes me crazy, our adoption is moving along more smoothly than I could have ever imagined.
But today has been a rough day, and I'm ready to vent a little. So click off now if you don't want to hear it! (Of course there are cute pics of Jax at the bottom, I use those to soften up whiny posts like this!)
I really, really want our adoption paperwork submitted this week. I was hoping to have everything notarized today and be done, but of course that never happens. The lady who notarized today I didn't like at all. She whined about having to redo stuff that she messed up. I wanted to slap her. We've been signing and notarizing and redoing for two months! So don't even cry to me about it. Needless to say we still have a couple more things before we are totally done.
I've been so excited about how well Jax has been doing healthwise, until I realize that his healthy is still so sick! He did great on our trip, and thats because we made sure we had our meds on hand to keep us sane. Robinol came with us everywhere, and prevented him from needing suctioning constantly!
Tobi continues to be our saving grace as well. We started our round of that when we got home, and he's been doing better respiratory wise. But somedays at night I'm really tired of his "routine", and once again wonder why we don't get any nursing care when everyone else does! I would so love a break from especially his night routine, because its the longest, and I'm always tired already when I remember how much I still have to do for him.
21 meds, most of which have to be crushed because of his ketogenic diet. Shots, nebs, inhalers, setting up night feeds, suppositories, and switching him to his humidifier, which entails switching a bunch of tubing around! And like I said, his healthy is his bowels don't work, so liquid suppositories make him go. Night feeds consist of rigging up a 60cc syringe to his crib so his belly is always venting, because he swallows so much air with his trach. Me and Ray were just saying that going to get Makayla is going to be like a second honeymoon! Although I know after about a day I'll miss the boys terribly! But a little secret, I'm kind of glad I get to pass of Jaxson's cares to someone else for a while!
He had his monthly labs yesterday, and my ped called me last night because his sodium is dangerously low. As soon as she told me I remembered that we pulled his cecostomy out, and his sodium supplement was coming from those flushes of saline! We forgot to restart his sodium supplement when we pulled the cecostomy out. So we added that med to our regimen and avoided going to the ER for sodium levels. Its crazy, I never though calcium, sodium, and potassium could cause such problems, but man they do. Arrhythmia's and other crazy things have landed us in the ER from his electrolytes being out of whack! He gets all those supplements because he loses them in his high doses of diuretics that he's never been able to come off of. If we even try to wean his diuretics his lungs fill with fluid! Antiphospholipid antibody syndrome means a shot of lovenox twice a day he'll need for the rest of his life. So I get to stick my baby forever to prevent his blood from clotting off any more major viens. I'm so sick of calling on bills that are wrong. Why do they have to send out a statement, and EOB and then a bill, all from the same appointment. I get more mail for Jax every day than the whole family put together. I'm so sick of calling billing because they coded it under Down syndrome, and that diagnosis is NEVER covered. Why can't they get it right the first time so I don't waste my time calling everybody and their dog to make sure its taken care of?Of course I'm grateful every day that I have Jaxson, but sometimes its hard to think about how sick his little body will always be. And how much intervention it takes to keep him alive.

I can't wait to have a "normal" Down syndrome child! The girl that's helping me with my adoption paperwork from RR thinks that is hilarious. That I want a "normal" DS child, but you know what I mean. I want to sign with her and teach her to walk! To laugh when she uses those flexible legs to go from sitting to belly by means of the middle splits! You know, "normal" DS stuff!
Anyway, I feel much better now, and here's my sweet, miracle boy to soften the mood back up. I have an awful lot of pics of him sleeping. Probably because he sleeps so cute!

Monday, June 21, 2010

Beautiful Zoey Grace!

As always our favorite part of our California trips is visiting with miss Zoey, uh, I mean the Needham family! They are the first online Down syndrome friends we met in person, and it was an instant family bond. We love the Needhams, and there is something about Zoey that you just can't explain. We've met many DS kids, with all different levels of medical problems, but this girl just glows! You hold her and you don't want to put her down. You want to play with her gorgeous hair, and feel her super tight hugs she gives. She is such an angel!
We have lots of pics of Zoey. She had just woken up from her nap and was being super cute!

The boys in the pool.

Ray was cracking up because he kept getting pics of me and Zoey making the same faces or doing the same thing at the same time!

Ray was tickling her with his goatee. She was enthralled with that hairy face!

Heather and Jax

The night we got home, Jax wearing his Disneyland jammies. And look who's sitting up so tall in the chair!

Sunday, June 20, 2010

Happy Fathers day, and Reeces Rainbows 4th anniversary

Happy Fathers day to all the fathers out there. Especially my father and hubby. My hubby never even imagined he would have kids. And now he is smitten by special needs kids and is traveling across the world to adopt our baby girl!
He is a wonderful husband, coach, wrestling buddy, and of course, the biggest tease ever!
We love you daddy!

This is also the 4 year anniversary for Reeces Rainbow! Over 250 kids have been saved from institutions, and over 500,000 dollars in grants have been given out. I highly encourage adoption through them, it hasn't been as difficult as I had imagined, and the rewards are indescribable! If you are unable to adopt, you can still help by sponsoring a child, and helping another family bring their child home!

Friday, June 18, 2010

Far away friends

Everytime we are in California we have to see all of our friends that live there. We can't wait until we are truly neighbors! First we saw Ella, who luckily was home by the time we got there, so we didn't have to visit in a hospital room!
She is always very interested in Jax equipment and tubes!

Our crazy boys and their crazy girls!

Tanner was trying to entertain his girlfriend with his crystal. She wasn't too happy, until she got my phone that is!

The beach is another favorite place for us. When we get down there we will be doing Friday beach day with Heather's boys!

It was so windy we couldn't get Jax tent up, so he chilled on a towel.

After the beach we went to Peanuts house for dinner. She doesn't look to thrilled to see us, does she?

The Disneyland Hotel has the best pool. And once Carter had mastered swimming without a life jacket, he could go down the slide. He was so excited!

When Makayla gets home we will be doing a lot more princess stuff. We will finally try the princess character dinner. The boys don't even care, they are already fighting over who is going to show her which princesses!

Thursday, June 17, 2010


I had to put this song on my blog since we are missing our California home so much right now! As soon as we get Makayla home we are moving!!
Ok, the beginning of picture overload! We always have so much fun in California. The wedding was the first thing we did, and it was absolutely beautiful! I want to show you this house the wedding was at. Wow, it was amazing! But some of the wedding pics are not on the computer yet. So we'll start with Disneyland. These pics are in no order. Just random days at Disneyland.
Who wants these toys?!

Jaxson getting put on the Toy Story ride! All by himself in his chair!

The boys with Peanuts brother, they are such great buddies!

It was Mondo's birthday on Tuesday, and this is what we found in our hotel room! How cute is that? They put chocolates on our bed everyday. I can live with that!

Mondo getting his birthday pin put on at Goofy's kitchen so everybody knows its his birthday!

Of course our same Dale that loves Jax so much! I really wish I could talk to this person out of their costume!

Can't do Goofy's kitchen without Goofy!

Me and Ray have talked about renewing our vows at the Disneyland hotel. Now we for sure are. You get this Cinderella carriage when you get married there!!

Once again Jax getting on the rides in his own special way.

I think Buzz Lightyear is Jax favorite ride. Look at that smile!

Look at this hidden Mickey we found!

I found my new favorite use for baby legs. To go under shorts at night in Disneyland. Jax is ready to go back out for some night fun!

We found Mickey and were the first ones in line. Of course Jax was a character favorite, as always!

If you saw on Makayla's blog, we got our immigration approval! That is the last big thing that needs to be done. Now I just have a few more things to have notarized, and our paperwork is off! Now my friends are allowed to throw me a girl shower. I've been waiting for this approval, because they are the last people that can deny our adoption! So now she's ours, because I've heard the judges in her country have never said no. If your willing to adopt their children, they are willing to give them to us. So if you want an invite to the shower, email me at laceyrugg@hotmail.com. It will be July 10th, at around 1:00 pm.