See this gorgeous boy, he is not as sweet and innocent as he looks! Oh no, not this boy!!

This boy is trying to make me as crazy as possible before I take him on a 4 hour plane ride across the country!
You know we've been having problems changing his trach because he has a lot of tissue around the hole, and the hole seems smaller. Today when I changed his trach, he did his normal panic, turn blue, because mommy can't get that trach in fast enough. But today, even after I got the trach in, his color didn't come back.
In fact, it got worse, as he was starting to lose consciousness, I grabbed my ampu-bag out of his closet. Something we've had since he was born, but fortunately have never had to use! Something you should only need in the hospital. You know, the thing that is by every childs bed in the PICU, and is in a bag in every room in the hospital, just in case. We have one in our sons closet, just in case!
I cranked the oxygen up to 10, and bagged my baby back.
I never had a chance to put his pulse ox on, I couldn't take the time to do that, so I don't know what his oxygen levels actually were. Or his heart rate. But I'm kind of glad I couldn't see that, because I'm sure they were not pretty!
Oh I'm ever so thankful for my training! Particularly my pediatric training. My ability to not panic, and know exactly what to do, was from 4 years working with very sick children.

Yesterday when I was up at the hospital getting Arina's swallow study done, I ran into an old friend I used to work with. We started talking. I was asking her how work had been, any super sick heart babies right now, etc. We joked about a little girl that was one of my first patients. I had seen her and her mom in the store the other day. She is now 7, and healthy! She was one that nurses hated having. You just never knew if this little girl was going to code on you, or you were going to be calling doctors, and running her to the PICU! Then my friend laughed at me and said, your son is the same way!
That made me think for a minute. My son was one that nurses loved, but he made them extremely uncomfortable! You just never knew what he was going to pull. Just ask daddy, or auntie Boo, both got to experience that when Jax was trached. Nurses running in his room, bagging my son back, debating on if they should push that little blue button! One nurse was my good friend, and there she was, working on my son. Ray said he'd never seen her move so fast in his life! Because usually he is talking to her about In and Out Burger, or California, because they are both from there. But not that night!

We have less than a week before we leave on our Make a Wish trip. Oh I'm so excited for Jax, but so worried at the same time. I question if its a good idea taking him. I don't want to be 30,000 feet in the air and have a crisis! My ped told me we were going to have to turn his oxygen up, because of the altitude. That makes me nervous! Not good for a momma that's a nervous flyer already!
But again, we have to live, Jaxson has to live, and he deserves the world on a silver platter.

Oh the fun we are going to have, and Jax is going to behave! If not, there is a childrens hospital close, and I hear they have Disney rooms, perfect for our Mickey lover! Jaxson and Arina are ready to go, with these to die for outfits from Sarah!

A ray of sunshine!

Monday, literally as I was hitting the publish button on my last post, Ray walked in with the mail. There was two boxes. When I saw that they were from JEllens house of fabric, I knew it was our quilt from dear Sarah. Sarah and her mom are making quilts for kids adopted through Reeces Rainbow. But I was surprised to see a box for Jax from them as well.
When I opened them, I pulled out the most beautiful quilts I've ever seen!
So beautiful, in fact, that I don't even want to use them, for fear of getting them dirty!!







These quilts are so special, knowing that one of our favorite friends made them!

It's not an answer to our problems, but it brings a ray of sunshine to my day. And reminds me that I'm truly lucky for the friends in my life! And for my little munchkins!!

Soul searching

One thing I've found, especially in the last 5 years since having Jax, is that bad will happen until you think it just can't get any worse. And then something good will come out of where you least expect it.
For example, when Jax was just a couple months old, I hadn't been able to go back to work, because he was constantly in the hospital. I was spending a lot of money on gas driving an hour back and forth to the hospital, and food while up at the hospital. We had nothing. And then when I wondered how we were going to eat for a week, I got a check for 1200 dollars in the mail from the government. They had just upped the child tax credit, and were reimbursing people for the difference. 300 dollars for 4 children!

Things have just gone downhill since Ray transferred to California. The IRS continues to hold onto our adoption tax credit. Money we were going to pay for a place for Ray to live, and airfare for him to come home on some weekends. Bills keep popping out of nowhere, and I'm desperately looking for the good to come. I was thrown over the edge Saturday when I opened a bill from the company that did our home nursing when we had it. Our insurance paid for 90 days of home nursing when Jax was trached. It had gone over that 90 days when the home nursing company called to verify hours for the next month. I mentioned that I thought it was only supposed to be for 90 days, and she told me that she had him pre-approved for the next two months. Later that day I got a phone call saying our nursing was done. That was over a year ago. This bill was for all the nursing hours over that 90 days. Close to 14,000 dollars!
You better believe I'm going to fight it! Its not my fault they messed up. I'm not sure where this lady had her pre-approval, but it wasn't from my insurance! But just because I fight it doesn't mean I'm going to win. This would be a car payment if we have to pay it ourselves. Now you see how one thing can throw the family of a medically fragile child into bankruptcy!
All the people out there that criticize us for wanting the waiver for our children. This is why. You have no idea what is not going to be covered, and what expensive service or equipment that is life saving is going to have to come out of your own pocket!!
Easter was kind of a bust. Neither me nor Ray really cared too much. Neither family invited us over for an Easter dinner, and we found ourselves running to the store for Easter baskets at 10pm on Saturday night!

I'm trying to figure out what the message is in all of this. Is He trying to tell us that moving is a bad idea? Or is He just testing us, that good things don't come without hard work and trials?
I'm not quite sure, but I'm not sure how much longer we can go on this way!

Pneumonia for the princess

Lots of respiratory crap in our house right now. Funny thing is, none of its viral, and Jax is the only one not affected, except that he still has thick, nasty junk!
I let the boys take turns sleeping in my bed when Ray is gone. When Tanner was sleeping with me, I noticed that he wheezes all night long. I took him to my ped, and his asthma and allergies are out of control! She put him on back to back doses of antibiotics for his sinuses, and steroids. Carter is a week off steroids, and wheezing like crazy as well. Ped says the cats have to go! She told me about a study where 50 % of people who have never had asthma, developed it after living with cats. With our family asthma history, the cats are just adding to the problems. So far Tanner doesn't seem too concerned about his kitties leaving, but we'll see when they actually go!

The princess has had fevers the last couple days. Nothing extremely high, and she acts fine. I actually wouldn't have even taken her in if my ped hadn't called me to tell me she was going to be out next week (I know, how am I going to leave this lady??) She wanted her checked for a UTI, something I'm not used to with boys. The only time Jax had UTI's was in the dirty hospital. She checked her from head to toe. Ears were fine, throat was fine. I mentioned that maybe she aspirated, because she did fail her swallow study miserably. And after a chest x-ray, a big, beautiful pneumonia in her lungs! Even though she is not having respiratory problems with this, we can't let her aspirate. It reminded me of a couple other times she had fevers that went away on their own. These were probably pneumonia's as well. And even in the orphanage she was in the sick room for a while with fevers. We are doing another swallow study next Wednesday, but I fear we are heading towards a g-tube. I'm not sure what we'll do, she eats so well, I hate to take that away from her, but she even aspirated on honey thick liquids last time. That doesn't leave us with a lot she can take by mouth.
Suck!!
This girl loves to eat!!


Uhh, maybe this isn't the greatest thing to eat!

The big brother

I thought it was time to do a post on someone other than the two little ones.
I picked Carter because of the "oh so grown up" thing he did in his class the other day. Oh and because I got some cute pics of him this afternoon!

Carter has always been my little dreamboat! Girls flock to him, and teachers at the school love him. I have nicknamed him my student body president! He's the kid that is nice to everyone, is helpful, and just plain cute. I can totally see him as student body president in high school. He's a good athlete, and he's been known to help other kids in his class at P.E. when they are struggling.

He's come home a few times and told me about kids that have said the "R" word, and he's asked them nicely not too. I guess there is a little girl that always says it. So he went up to his teacher and asked her if they could talk about the R word in class.

So yesterday his teacher had a discussion about hurtful words. It wasn't just about the R word, but all hurtful words. Point is this discussion never would have taken place if Carter hadn't mentioned it. I guess he told his class its hurtful to his baby brother and sister. That its making fun of them. The class has seen his siblings, and he asked them if they looked any different to them. Most of the kids said no!
This little man will change the world, one class at a time!

Stop the clock please!

Time is flying by like the speed of light! I need it to slow down, way down!
I was hoping to have my house on the market by our Make a Wish trip. Then I realized that our trip is two weeks away!
What the heck? Where is the time going?
There is no way my house is going to be ready to go on the market in two weeks. Now I know that I need to get my butt in gear and get this house ready, or our family will never be together in California!
I'm frustrated beyond words because we still haven't received our adoption tax credit. I know many adoptive families are in our same boat. Some families are planning on using this money for another adoption. We need it to replenish our savings we drained when adopting Arina. Without this money I can't get Ray into an apartment. Soon we won't be able to afford to fly him home as much as we'd like. He's tired of living out of his suitcase, in a less than ideal living situation.
I'm just trying to remember that good will come, I have to be patient, but man its hard!!

This weekend with daddy here was of course, another whirlwind. Friday and Saturday morning we worked on getting the front yard beautiful, so there's one thing crossed off the list.
We played with the kids, daddy soaked up every minute of them. I'm amazed that Arina is never afraid of Ray when he comes home. She doesn't forget, she knows who her daddy is!




Jaxson had some great smiles for daddy!





Carter had his first superleague games on Saturday. Back to back games, that really sucked, because the boys were exhausted for the second game. I'm hoping our next games have breaks in between.
The first game was a nailbiter. We held them and won by one point! They were so tired for the second game that they weren't able to hold the other team back.
I can tell Carter still needs to build his confidence back up. He is doing fabulous in practice, almost hitting home runs, which is unheard of by an 8 year old. But after his verbally abusive coaches in his fall league, he still has to remember that these coaches love him, and he doesn't have to worry about being screamed at! Its amazing how much damage coaches can do. This is an allstar player, reduced to nothing by belittling words. It was hard because I wanted to pull him out, but Ray didn't want him thinking he could just quit if it got rough. I don't know who was right, only that Carter just shut down. He quit hitting, and he just plain quit playing!
His new team is coaches he had two years ago. They adore him, and when they formed this team, even though its a 10 year old team, they asked Carter to play for them! I'm excited to see how this team progresses!



Jax has an echo and cardiology appointment tomorrow. I'm nervous about his echo, but want the info, because it will tell us if we definitely need to go back to the cath lab and see whats going on with his little body. Then I have to decide who's going to do the cath. Yikes!

Guess who's got some mad new skills!

That's right, the princess does!!
She is now crawling on her hands and knees! No more pulling with her hands and sliding. The funny thing is she goes backwards a lot now. I don't know if she thinks she'll get there faster, but I'll definitely have to get that one on video! She is also pulling up to everything. She'll even push herself to standing in the middle of the room, but she falls back on her bum before she can stand.
In this first video, she starts to move the old way, until I stop her, and then she crawls on her hands and knees.






We also cut her hair. We evened it up, and although I was horrified at first, its a cute bob now. We had to get rid of the partial mullet. Hopefully now it will grow long all even. I have a hard time getting before and after pictures, because the girl won't sit still for 5 seconds!
Before...
After.

I really think she will start walking soon. She is so close. She will look so funny walking, because she is so tiny. This is my 4 month old niece next to my 19 month old princess! Not much difference!

Quick post

Quick post while the munchkins are in bed and before I hit Jax night routine and go to bed myself. Life is so crazy right now, I know that's how a lot of posts begin lately, but its true!
Moving a big family to another state is not easy, and we really need to find Ray an apartment. The few he looked at last weekend are either expensive, or in a dumpy area. His co-worker said to try a little farther south, so when he gets some free time, that's what he's going to do. He comes home Thursday night for the weekend, and I know he can't wait. Not only does he miss us terribly, but he's getting tired of living out of a suitcase. I know that would make me crazy!!

Tomorrow is Jax neuro appointment to discuss the VNS. I'm anxious to see if this would be a good thing for him, even though it does mean another surgery, and two new scars. He is having more seizures, and they are lasting longer, and I'm thinking it may be a good time to stock up on some diastat in case of an emergency. Its been a long time since we had to use it, but there was a time when we were going through it like candy! I wan't to get this VNS in, before we get to that point again!
The only problem is our Make a Wish trip is less than a month away. No way do I dare book a surgery right before a trip, because Lord knows how Jax handles surgery's! So we'll have to book it for right when we get back, which makes the trip all the more special!
I'm so excited for the trip, and for Jax. There is no way we would be able to get Jax to Florida without Make a Wish's help. I'm even getting nervous that its even going to work with their help. I'm starting to think that another adult coming with us may have been a smart thing! Jax needs his car seat for the plane. Thankfully Arina doesn't. We also have his special needs stroller, I'm worried about that being damaged on the plane. I just have to make sure they know to be careful, that's a four thousand dollar stroller! Along with a concentrator, feeding pump, suction, and the kids, its going to be interesting! Thankfully my home care company is shipping formula and supplies there, so we don't have to drag so much stuff. And there should be a vent and oxygen tanks waiting for us at Give Kids the World. I'm also just worried about the plane ride in general. You know how well I do on planes! The trip to Ukraine was not without Valium, and plenty of panic attacks! I hate planes, and I've never been on one with my kids before.
Yikes!
Wednesday I take Jax to his ped. The kid is making me crazy! We know something is going on, but so far he's not giving us any answers. He's super puffy, even in his hands and arms. His junk is not going away, even after starting Tobi. I know he's third spacing fluid, but why. He's just not getting sick like he should be if this is happening. It may sound like a good thing, but I'm worried he's going to tank all at once! I mean, even with all this extra fluid, so far his oxygen need hasn't changed, although he is working harder and breathing faster. So Wednesday she is going to give him a head to toe, and do lots of labs. We just need some answers!
To top it all off, I've got a sore throat tonight.
Fabulous!!

Doing Down syndrome different

Many of you may know that we didn't know about Jaxson having Down syndrome, or a major heart defect until after he was born. He definitely was the most traumatic birth. My bed was half-way out of the room when he was born, because they could not get his heart rate up, and they were taking me for an emergency c-section.
As soon as they threw this tiny person on my chest, I knew he was different. It wasn't until he was bundled, and they handed him to me, that I could see the Down syndrome. I even said something out loud, and the nurses didn't say a word. He was wisked away because his breathing was labored. Ray and I both weren't bothered by the DS diagnosis. I'm not sure why we didn't have the feeling of loss, but we really didn't. Even his heart defect didn't scare me. I guess that's the benefit of working at the children's hospital as a CNA, in the process of getting my nursing degree.

Even when we brought him home I didn't worry to much about his health. His NICU stay was quite uneventful. Bili lights, oxygen and feeding tubes, very typical stuff. He struggled to take anything by mouth because breathing took all of his energy. But I knew as soon as his heart was repaired he would able to grow and develop.
I specifically remember his two week appointment with my ped. She asked me if I had any questions or concerns with Jaxson. I told her the only thing that bothered me was this was going to be my last baby, and not being able to breastfeed him was killing me! She said there was no reason at all that he couldn't breastfeed. So we started working with the lactate nurse, and he started nursing really well. He would only nurse for 5 minutes or so, because he tired so easily, but at least he was nursing, and we were getting that bonding time. The pump would give him all the breastmilk he needed through his tube!
Little did I know how quickly things would take a dramatic turn. Diagnosis would start piling up, and his health would go downhill instead of uphill. Our experience with Down syndrome has been much different than most.

Then a certain princess entered our lives, and I've seen a whole different side of Down syndrome!

One that makes me more and more angry with the word "retard". And makes me so angry with the stigma that Down syndrome still carries. This girl couldn't be more typical. As typical goes that is, I mean, every kid, extra chromosome or not, develops at a different rate.
As spring approaches, we are entering a whole new world of firsts for our princess. This girl has never wiggled her toes in the grass before. She's never been in a swimming pool, or to the zoo.

I still can't believe that she was thrown away, doomed to live in an institution, simply because of her diagnosis.
She is entering a whole new stage, the stage of toddlerhood, and I'm loving every minute of the naughtiness! After all, its been 8 years since we last had that in our home. Now that she has discovered the kitty food, I'm chasing her away from there constantly! Seriously, cat food can't taste good!
You should see the fits that this girl throws if you take a toy away, or move her away from something she was getting into. Its a far cry from the quiet child in the orphanage!

She also gave me my first toddler scare in a long time! She was in my room with me, and she started choking. I had just vacuumed my floor, so I couldn't figure out what she had in her mouth. She had just eaten, so I wondered if something she ate was stuck. She was breathing ok, but she kept gagging, and crying. Training kicked in and I did infant Heimlich on her. Nothing. As I was trying to decide how to proceed, 911, or emergency room, she finally coughed it up so I could pull it out of her mouth. It was a piece of that tape that they put on the sides of DVD's. I have no idea where she got that. She must have reached under my dresser or something.
Sheesh!
I have no doubt that she will go to a regular school, with typical peers. And she will soak up every minute of what they teach, because that's what she does.

Its been interesting to see both sides of Down syndrome. I'm grateful for both my babies, and wouldn't change a thing about either one! Jax is severely delayed because of his medical problems, not his Down syndrome. But I'm telling you that this boy will change your life! People hold him and they just cry. He does that to you, he's just too perfect! We need to continue to educate people that Down syndrome is more alike than different!!

School for my medically fragile!

I haven't even given school a thought for Jax until this last 6 months. Our doctor would never let him in a classroom, and even though I don't keep Jax locked away at home, even I drew the line at a classroom full of kids! Jax has been on home and hospital preschool for the last couple years. They only come once a month, for like 45 minutes, so its nowhere near what he would get in a preschool class. I never cared about that, because of his fragile health, he gets home OT and PT through our insurance, and that's what he needs more than preschool.
Now that Jax is kindergarten age this year, the question of the classroom has come up again. And I am having to make the best decision for my little man!

At first I still said no way to the classroom. One thing that was big for me, that may be different for other families, is that Jax will never learn his ABC's. He'll never learn his numbers, or colors, so is it worth his life by putting him with other children. There are many fragile children, that still mentally can learn all that school offers. Jax, on the other hand, is simply working on head control, and grabbing with his hands.
Since having Arina home, and seeing the leaps and bounds he's made in development, I'm actually considering a school for him. Of course it would be scrutinized big time, and I would be doing a lot of checking it out before he actually went.

Even though we are moving, we did Jax transition meeting, and checked out a new special needs school our district has. Now this school is amazing!! Its hard to believe that our district, that has struggled just to stay afloat since splitting with another district, has this new school. The other district took all the money, even though we have triple the children. Jax school teacher from last year quit to stay home with her kids when they wanted her to take double the load of children. And not just any children, special needs children!
The land for this school was donated by the family of a DS lady, that used to go to the old school. That left them wiggle room to make this school fantastic. Its also named after her. Kauri Sue Hamilton school. This school would be amazing for Jax. There are no typical children in this school, only special needs. Everything is scrubbed between children, and they have many fragile kids, so they know things need to stay clean. They have sensory rooms, with bright lights. They have a pool, that is as warm as a bathtub. Even the room itself is kept super warm, because so many of these kids, Jax included, can't regulate their own body temperature. They also have an amazing therapy room for the kids.
Honestly, I shouldn't have even toured the school, because this is a school that I could send Jax too, and it kind of sucks that he won't get to experience it. He would have a nurse with him 24/7, because of his trach, and the director of the school couldn't believe that we didn't already have a nurse for him. She said all of their trach kids had home nursing. Well not this kid! And not by my choice!

Its not a definite go on school for Jax. Because we are moving, I have to see if they have a school strictly for special needs, with no typical kids. I have been told by a friend that the city we are moving to has a fantastic special needs program, so I'm hopeful!

We also haven't decided if we dare put Jax in a classroom. Yes, their are many kids that are trached and vented. The one difference with Jax is that he wasn't trached as an newborn or infant. Where they usually are expected to get bigger and stronger. We were forced to trach Jax because his lung function was failing so miserably. He wasn't trached until he was 4, and almost 5 when starting the vent. His lungs are continuing to trend downward, so he is actually getting sicker instead of stronger.
The puffiness is going up again, and my ped was thinking the cath lab was where we were headed. But I refuse to go back to the cath lab with our current cardio. So we have to decide if he can wait until we move, or I can go with another cardio the does caths from the same hospital. We even considered just having the radiologist from specials do the work. He does caths, but strictly to look at the veins, he couldn't measure pressures or anything like that. This is a decision that we are having to make right now. We can't jump into the cath lab, because Jax has only one vein left to use! They go in the femoral veins on each leg, and sometimes the chest. Jax can't have any central lines in his chest or arms, because he's clotted off all those veins. His right femoral is toast! They tried using it for a central line during his last surgery, and couldn't access it. They had to do a cutdown to get into that vein, and even then it was super sensitive and bled like crazy! So his left femoral is all this kid has left!
Jax is also probably going to be having surgery for the vagal nerve stimulator for his seizures. There are just no meds left for us to try. The NP wanted to start a new med, but our neuro said no way. It affects the liver, and with Jax already fragile body, this med just wasn't worth trying. So we have an appointment with our neuro to discuss the VNS. He gave me a video to watch, explaining how it works, and I'm hopeful that this can help Jax, even just a little bit. His EEG shows non-convulsive status right now, and one little slip can send him into full status, which would be fatal for him. So we don't have a lot of time play around with this. They say its a simple surgery, but it involves two incisions. One in the chest, and one in the neck. Just more scars to add to the collection!

Finally pictures!

We are barely hanging on with our tip-toes over here! So much going on, and not having daddy here. Whew! I'm thinking I'm never going to be able to sell my house while I live here with my messy brood! A possible surgery for Jax, etc, etc!

Our whirlwind weekend with daddy is over. We dropped him off at the airport a few hours ago. He had a horrible flight here, the airplane popped a tire when they landed. He said the flight attendants were rude. And he was delayed 2 hours in Phoenix, which means I had to go get him at 2 in the morning! His flight back won't be much better. He just text me and said he's delayed an hour in Phoenix again. Bye bye Southwest, you just lost a lot of business. He's done flying with you, and he'll be coming back and forth A LOT! Oh well, your loss! But now I have to find another cheap airline. Hmmm!

Lots to talk about, but I'll break it up, or we'll have the worlds longest post! I want to talk about school for medically fragile kids, as we just had Jax transition to kindergarten meeting!

But daddy coming home means he brought his camera, and all of our pictures from our trip. We didn't take a single picture this weekend. Makes me mad, but Friday we had one appointment after another, and then the dang weather got bad again!
Grrr...I'm going crazy! As we speak there is snow on the ground!

So a few weeks delayed, here we go!
Carter and his precious princess!

Miss Zoey and Arina getting re-acquainted!

The beautiful Miss Addy. This was our first time meeting her. And although her momma says she's a man lover, I sure got some great snuggles!

The crazy Reid. I absolutely love this picture. If you know Reid, you know this picture pretty much sums him up!

The lovely Emily and mommy.

Miss Addy giving Arina kisses.

I love this one. Look at Arina watching Cammie sign so intently! Hopefully she'll start signing soon!

Trying to get all the little's to sit still for a picture!

In Downtown Disney, there is a store called Ridemakerz. You can build your own car, and make it a remote control. It's very cool. The boys, and daddy, had a blast making cars!




My beautiful boy, these need no words!




She truly is a princess. Lots of pillow, in a big fluffy bed all to herself!


Look at my beautiful niece! Ray is staying with them in Cali until he finds a place! She is so gorgeous, give me some of those cheekers!!