Oh crap, RSV!!!

Daddy comes home tonight for the weekend! Yippee!!
Although he may come home just in time for chaos!
Carter started coughing and wheezing Tuesday. I got a call from his baseball coach that he wasn't feeling well, so I picked him up. That night his sats were dropping to 80 at times. I got through the night with some blow by oxygen, and headed to my peds office yesterday. He acted ok, although thats Carter. The kid can't stand to sit still for 30 seconds, even if he's sick. My ped did a VRP, just to see if it was anything, for the little ones sake.
When I checked the results online last night, it looks to me like he has RSV! I haven't gotten confirmation from my ped yet, but it said Influenza A and B were not detected. But RSV says detected. To me thats a positive. Last night I put oxygen on him before he fell asleep, so I didn't have to fight him when he was sleeping. That turned out to be the best thing, his sats dropped again asleep, and he left the oxygen on all night!
I'm a little worried that Carter may get worse as well if its RSV. Its only been two days, and RSV usually peaks around day 7, and can last weeks! He's been hospitalized every time he's had RSV, although its been a few years. Him and Jax were actually hospitalized together with RSV one year!
I'm just praying Jax doesn't get it, or we may be in for a rough couple weeks!
Jax also goes to ENT tomorrow. When I changed his trach the other day, I had a really hard time getting the new trach in. The hole seems to have shrunk. And to make matters worse, he has some tissue on one side, making it more difficult. He panicked and turned some nasty shades of blue while I tried to get his head back and open that hole to get the trach in!
Good times!
Meanwhile, I have been trying new hairdo's with the princess. I'm wondering if I should trim her hair so its all even. Its too short in the middle back, so this cute hairdo only lasted about an hour before it all fell out!




She found Carter and his apple. Or I should say she found the apple, that was what she had her eyes on!
Yes, we chopped Carters hair! He wanted it short for baseball. Last season he had a hard time because he plays catcher, and every time he threw his mask off, his hair was in his face.

Not much to report here. At least not much good to report. So to save the whiny, we'll just look at more cute pics from my crappy camera!
Arina trying out her new swimsuit from Heather! The buddha is too cute!


Arina helping me go through the medical bills. I like her idea better, just throw them around!

Just more crazy sleeping

If we thought Jax would be safe from his sister up in his chair, we were wrong! She just uses it to practice pulling up to stand!


There's my favorite brother!

Blue is not my color!

Feeling a little blue lately.
Not sure why.
Could it be that daddy is so far away and looking up airfare I'm finding its outrageously expensive?
Mmmm, could be, although I'm finding we are doing pretty dang good on our own.
Probably because we've been too busy to get distracted. Carter's superleague baseball season starts soon, so lots of practices, and getting uniforms done.
Jax is making me crazy with this junk. Its starting to remind me of a horrible few months we had when he was first trached. You may remember that, but of course I can't even find it in my archives. Sheesh! Remember the picture daddy took of my sleeping on Jax Ottoman? Yeah, can't find it anywhere.
Usually when he's on the vent, he doesn't get as junky. I'm not sure if its because of all the air being pushed through or what. But the last few nights he's been waking up in the middle of the night. Then he coughs and I have to get up every few minutes to suction him until he falls back to sleep. I'm starting to wonder if its the new vent we have. That for some strange reason its making him cough and not sleep good.
Who knows, it could be many things. Seizures, new vent, anything!
If spring would hurry and get here, maybe it would brighten the mood a bit.
Maybe!

My crummy pictures

My first day without daddy started off ok. When the boys got home from school was when the chaos started. Run Carter to baseball, come home and take Mondo to his concert. Go back and pick up Carter, then Mondo, come home. This whole time Arina is screaming bloody murder! She then proceeds to vomit on the floor. I gave her watered down juice and put her to bed. Jax had a slight fever, but it went away on its own and hasn't returned. He is still super junky, although nothing else. I hate this limbo! I wish he would either get sick, or lose the junkiness! Now today, he just randomly cries uncontrollably, then he's fine. I don't know what that's about!
I'm not sure whats up with Arina. She hasn't vomited again, besides her typical reflux. She has had a lot of poopy diapers today though. Its like we came home from Cali a total mess!

The IRS is auditing most adoption tax credits, that includes us! So we have no idea when to expect it, it could take months. Which doesn't help when we need the money to do a couple things to the house before putting it on the market.

I snapped some pictures, but these are usually how my pictures turn out on this camera.
The wrong thing in focus.

Just plain blurry!

blurry and red eye!

Once again, blurry!

It makes me crazy! Its auto focus, so I can't manually focus on what I want. This is supposed to be a nice point and shoot camera. Its a nikon coolpix. Ray keeps telling me to read the camera book. I don't have time for that. Plus I'm finding that I have major reading comprehension problems! I read instructions, but can't figure out how to actually do them.
I did get some good pics of Arina yesterday.
Showing off her new levi's from Heather!




See those chompers? She now sports both bottom teeth!

Home

We are home, and our drive was surprisingly quiet. Arina cried for a bit, that girl hates to be in her carseat! But otherwise it went well.
Now we get to do day to day routines without daddy. It will be strange, but good in the long run. He likes his new job so far. They are super busy, so he loves that. He will also get overtime with this job, which will be soo nice!

It was pretty rainy and gloomy the whole weekend. But a gloomy day at Disneyland or playing with friends pretty much beats any other day!
I don't have any pictures right now, because daddy thinks his super nice camera should stay with him!
*Aghem*

But we have some super cute pics of Ella's birthday party, if I ever get my hands on those pictures. Always love me some Zoey and Ella time. And of course Addy and mommy flew out, and let me tell you, I could eat that Addy right up! Her momma says she's a man lover, but I got me a lot of cuddles and loves from that sweet girl. Met some other new friends, and just had a great time.
Since Sunday, Jax has been super junky. He tends to get junky when we change the air on him, but this time even robinol is not helping. I hate it when I don't know if he's getting sick or not. It still hasn't turned into anything more. His sats are a little low, but nothing alarming yet. I wish it would just show itself or go away! Didn't get much sleep at the hotel because of that. I was suctioning or turning off alarms all night. We stayed an extra night because I was exhausted Monday, but Tuesday was no better, so we headed home anyway. I think sleeping right next to him doesn't help, because I hear every noise and beep. Last night in his own bed was a much better night.
Off to do loads of laundry, and catch a catnap when possible.
Have a great day!

Getting ready

Its been super busy and crazy around here. We have had a ton of appointments and trying to get ready to head to Cali tomorrow for the weekend. Daddy has been packing up all of his clothes, because he starts work in Fontana on Monday. I will be driving home Monday by myself. I'm a bit nervous about that, but I know we'll be fine!

Jax had an EEG last Thursday, and a neuro appointment Monday. We saw the nurse practitioner instead of his neuro, because his neuro was booked out, and with the increased seizures, we wanted to get him in. The NP said he had looked at the EEG. He didn't act like the results were a huge deal. We talked about changing meds, and also the vagal nerve stimulator. I had been wondering about that because its used for kids that have multiple medications fail to control seizures. And since his seizure activity is constant, I wonder if it would help control it better. The NP said he would talk to our doctor about changing a med, and the VNS, and then he would call me. Well I got a call yesterday from scheduling saying that our neuro wants us to see him on April 12th. So now I'm a bit worried on why I didn't get a phone call and why he wants us to come in. I looked his EEG up online (man I love that I can do that!) And here is a little of what it read.
"CLINICAL INTERPRETATION: This EEG is extremely abnormal due to nonstop
potentially epileptogenic abnormalities, out of the frontocentral head regions
perhaps more so, on the left. This could be consistent with an intractable clinical seizure disorder. Similar
patterns can be seen in nonconvulsive partial status
epilepticus."
So he's basically in status, and seizing nonstop. My ped is going to email neuro and see if she can get an answer before our appointment. So I'm not spending the next 3 weeks freaking out!

Arina had her 18 month check up today. She is a rock star, plain and simple! We are going to get a follow up swallow study, after getting her tonsils and adenoids out. And also a follow up sleep study, to see if it helped her apnea.
She is just under 17 lbs, so even though she looks so tiny, she has gained! She is also on the DS chart in about the 17th percentile. So she's not abnormally tiny, she just seems like it to us!
I bought her a sippy cup with a straw, and after only a couple tries, she can do it like a champ! She still pushes it away and wants a bottle after she eats, she's too lazy to finish the milk from the straw. We'll keep working on it!

Since we've been so busy, the camera has been collecting dust. But I knew you'd want your fix, so I found some recent pics.
Its been a long night!

My beautiful boy!



We are heading to Cali tomorrow afternoon. We have the birthday party Saturday, and Disneyland Sunday. We head home Monday, while daddy stays there and heads to his new job. We'll see you Tuesday, prayers for a safe, uneventful trip would be appreciated!
*and for those that asked, Jax is still on his oxygen. He can't come off or his sats drop. I just have to put the tubing under his shirt because the booger is a tube puller!

This is what I'm talking about!

Went to pick up daddy's Advair. 100.00 instead of the 75.00 like it used to be.

Momma calls the insurance, its changed this year. Its not longer straight co-pays, but this new system of which I didn't understand a single word.

We talked about some of Jax bigger meds. Cialis for Pulmonary hypertension, went from 45.00 a month to 60.00 a month. Flovent is like the Advair and will jump to 100.00 for a 3 month supply!!

Now add 21 more meds for Jax onto that. The amounts will be staggering.
I'm starting to hyperventilate a little bit!!

This little boy just got a lot more expensive!

Since everyone's premiums also went up again this year!

And they wonder why the economy is bad and no one can afford to go shopping!

Give me a *sigh* if you feel me!!

My parents doggy died on Friday night :( She was just a puppy, not even a year, yet she was the size of a small pony! She was a giant schnauzer. They had her spayed Friday, and although she was acting very lethargic, the vet said to expect that for a day or so. She was sleeping on my brothers bed. He called my mom in about midnight to tell her the dog peed on his bed. When my mom went to pick her up, she was limp, and my brother said he thought she was dead.
She was. My poor brother and dad are heartbroken! Keep them in your thoughts, many of you know animals are like family!


Last night me and Ray went on a date to see Jax girlfriend dance. Kayla, Auntie Boo's daughter, is on the UVU dance team, and they had their year end show. She looked beautiful, as always! And while this is Kayla today.....

This is the Kayla I remember! See that itty bitty in the very front? Not scared of anything, with her little tongue hanging out? Yep, thats my Keet!! I seriously need to find some dance pics of her and me when she was that little! I know I have them somewhere! (Yep, thats me, third from the front, looking like my eyeballs are popping out of my head. And Auntie Boo is second from back, with her finger up her nose! Sorry Boo, had to post it!)

I would have loved to take Jax, but there was no handicapped seating, and it would have been to noisy if he needed to be suctioned. But if it was closer to my house, I would have had someone bring him over after. I think she would have loved to see him there when she came out!
Jaxson loves Kayla more than anything. He is absolutely smitten by her! Look at that lovey face he gives only to her!!

Keet, good luck at nationals next month. You'll do fabulous, as always!!

Finding our way

We are finding our way through the rough patches of life with a fragile child. I'm still here, and I'm checking on our friends, although comments have been scarce. I'm trying!
This time of year is always rough, its when our insurance has started over for the year, and March is usually the time the bills start coming in, and I find myself digging through whats what.
Today I paid an 800.00 doctors appointment bill that I've been fighting for a year. I finally had to just pay it as it had gone to collections. I'm trying to find the energy to keep fighting to have it reimbursed, because I know it should be covered!
You may know that every medical bill has a code. We found when Jax was just a few days old that a diagnosis code of Down syndrome is never, EVER covered. On our EOB it says "this mental health diagnosis is not covered." Mental health???? So I'm constantly calling about bills that need to have the code changed. After all, I don't take Jax to the cardiologist because he has down syndrome. I take him because he has cardiac disease and pulmonary hypertension. Most people don't really understand where I'm coming from. I really don't mean to sound bitchy, but if I just had Arina I would have no idea either. So all of the nasty comments I receive when I do a post like this are from people that just plain don't understand. You have no idea how much Jaxson costs a month. His food is 1200.00. His vent is 1000,00. And thats just the beginning!
Right now we are appealing his medical bed, it was denied because its not medically necessary for him. I have to laugh out loud to that. The kid has every medical diagnosis you can have, and has every piece of medical equipment possible in his room. But the bed is not medically necessary. I don't really complain about what I have to pay for. Its that I have to make phone calls constantly, and look through paperwork daily, to fix mistakes. I feel like the insurance should pay me a salary for doing their job. It is a LOT of time wasted!

So let me say this...I'm very, very grateful for the insurance that I have. Its one of the best, and they really do cover most things. I am hoping that when we move Jax will get on the waiver. Normal insurance just doesn't cover a multi-million dollar child. Now I know what some people are thinking, I've seen it a lot from our RR adoptive families. People scream that they adopt a child and want state money. So let me say right now that Arina gets nothing, nor will she ever get anything. She does not get medicaid, and she does not get social security, (neither does Jax), and I don't ever plan on asking for it. We brought her home, and we will take care of her. But children like Jax just slip through the system. We can just hope that someday these poor kids will be seen, and not overlooked.
I took him in on Wednesday because he was puffy, and I could tell he was retaining fluid again. He was up a pound from last month. We did a bunch of labs, and thought that his chronically low albumin was the problem again. When I looked up his labs that night, his albumin was normal! I wish for once this kid would just be straight forward! The only other thing I can think of is blood flow is getting tight again returning to his heart, causing him to be puffy. So for now we watch for fluid to start backing into his lungs, causing respiratory distress, and then increase his diuretics. He had an EEG Thursday, but I won't know the results until his neuro appointment on Monday.

He needs to behave because next weekend we are driving daddy down to California. We are super excited to go to the big birthday bash, and meet Addy for the first time!!

Last night some special visitors came to bring something to Jax!
It was Buzz and Woody, with Make a Wish, to bring Jax his official notice that his wish is being granted (although we already have our flight info :) Make a wish is such a great organization. If you have the funds, a small donation does great things. We can take Jax somewhere we would never be able to take him without their help. I still worry about getting him there and not missing any equipment we may need. My home care company has been great, and they are going to ship a bunch of stuff, including formula and supplies, to Give Kids the World, so its waiting for us and we don't have to pack it.
He was so excited to see his favorite characters!




A great ending to a stressful few weeks. And a reminder that life is really great. I'll I have to do is look in my sweet baby boys face. He only has smiles, for all he's been through, he smiles. He does not judge, he only loves!

Arina the sponge

Our trip to the dentist went off without a hitch! We are now 2 years with no cavities! The dentist doesn't think Tanner or Carter will need braces (thank God!) I don't know where these kids get their good teeth, its not from me or daddy!

Arina is such a crack up! She's developing this little personality, and its too cute! Remember how much she loved the water bottle?

Make video montages at www.OneTrueMedia.com

She is moving all over the house now. We consistently find her coming down the hall to find us in our bedroom
Uh, excuse me, could you move the basket so I can come in???

We are getting all the crazy things DS kids can do with their low tone. Jax stays in the same spot I lay him down in. Arina has her legs all over the place!

Seriously, I have no idea how she did this!!


She is using her hands more and more. Now that we've gotten the ok to try table foods, there is nothing this girl won't eat! If she see's you with food, she's there in a heartbeat begging for a taste. We finally got her to wave! Yipee!! Now we are going to choose one sign, and start using it with her. We decided if it was anything to do with food, she'd pick it up fast! So we are doing the sign more. She has to sign more anytime she wants anything, including food.
Here's her wave.

Make photo slide shows at www.OneTrueMedia.com

She is also pulling herself to standing a lot. Yesterday she pulled herself all the way up on our TV stand, then she got stuck. Her hands were too high for her to try and let go and sit on her butt. Of course I did what every good mom does. Snap a picture before rescuing her!

Its been a busy weekend. Only two weeks before daddy starts working in California and I become a single mom for a few months! The IRS finally says they've received our return, so we are just hoping it comes this Friday or next Friday so we can drive daddy down to Cali and go to the big birthday bash!
Jaxson has been having more seizures the last couple weeks. What worries me is these aren't just quick startle seizures or his eye seizures. These are seizures that last a minute or longer. These are the seizures that we had a hard time controlling and eventually led to status. So Thursday we have an EEG and the following Monday an appointment with neuro. We need to get these controlled, if he goes into status again, there will be nothing that we can do. A pentabarb coma is out of the question as it almost took his life last time! He has also been super junky the last couple of days, but it has yet to turn into a respiratory virus. Sometimes I just wish he wasn't so complicated, that things could just be straight forward!
Friday was a beautiful day, and the boys didn't have school, so they were outside enjoying the sunshine. It was still too cool for the babies, but they didn't mind!


The babies are happy just staying inside and lovin on each other!



Saturday we had a fun Hopekids event. We had Hollywood connection all to ourselves. Rides, laser tag, and miniature golf.
I took Jaxson on the Merry go round, and I'm finding it more difficult to do these things with him as he gets bigger. Maybe if I would have rode on the horse behind him it would have been easier. He arches his back when you hold him upright, and he was trying to look at the lights. My arm was burning trying to hold him straight, as he's going up and down. Plus I had the oxygen tank on that arm. I should have put that on the floor! I only hope we can continue to include him in as much as we can when he gets bigger and harder to carry.


My Jonah was there, a treat for me as he is my favorite little boyfriend!


The boys LOVE miniature golf. They are so funny, they have no idea how to play right, but who cares, as long as they are having fun!


Jonah has the idea, just put the ball in with your hands! Duh people!

I tried to take Arina on the Merry go round. She was not having it! She enjoyed Disneyland so much, it surprised me that she was scared. I'm not sure if its because she was so stoic and quiet when we went to Disneyland, and now she has a personality, and an attitude to match!
She'd rather stay in mommy's arms and watch the horse move.

I would try to get her on and she would just dive back into my arms! Little stinker!

Tomorrow we take all 5 kids to the dentist at the same time. Wish me luck with that one!