Monday, June 27, 2011

We are in California for the next couple weeks, or until i run out of supplies for Jax!
Frday I did end up taking Jax to my ped for his incisions. She didnt like how they looked either, so she called neurosurgery, and they said the steri strips needed to come off. We were nervous that she was going to open up his incisions by pulling them off, but infection risk was more of a worry. The sites look horrible, but i think they are starting to heal, and so we should be out of the woods with infection.

We'll see everyone in a fee days, the only internet I have is on my phone, so posts will be few and far between!

Friday, June 24, 2011

This princess will try anything!

Jax continues to do well. I'm a tad concerned about his incision sites, they look super angry. I just pray that they don't get infected. True to Jax fashion, he hasn't needed much pain meds, we didn't even fill his loratab prescription. Have I ever said how much he amazes me?

The other day, the boys put the sprinkler under the tramp. Carter begged me to put Arina's swimsuit on and let her play with them. I was a little worried she wouldn't like the cold sprinkler water. But I should have known better!
This girl isn't afraid of anything! She had a ball! When it was time to come in, I had to drag her, kicking and screaming off the tramp.
I know she was very young when we rescued her, and she's probably already forgotten about life in an orphanage. But every time she does something new, I can't help but smile at how much better her life is, and how now she has every opportunity she deserves!

These videos are mostly for daddy. But do you think this girl cracks herself up or what.

Thursday, June 23, 2011

Home sweet home

Jax is home! Man I love surgeries that only keep us for one night. We like setting records for shortest hospital stay, instead of breaking our longest hospital stay record! He pulled his GJ out for the nurse. I warned them that he is a tube puller! So we had to wait for Specials Lab to have an opening to squeeze him in to get that tube switched. Never a dull moment!

I need to call neuro and make an appointment for them for two weeks. We are heading to Cali on Sunday for about 10 days, to look at houses and schools and such! Oh and of course, go to Disneyland! Can't let those season passes go to waste!

It always amazes me at how bruised and battered this kid is after such a short stay. Because he's on blood thinners, he bruises like a peach. So multiple tries for an IV leave lots of marks. Plus, they intubated him through his mouth to scope down his trach site, so he has nice red cheeks, that has turned this morning into a red mustache!
Last night...

This morning's mustache! Sexy!

His incision site. The VNS feels huge in his little body. You can see a bulge in his chest where it sits!

Tuesday, June 21, 2011

All tucked in

I just tucked my munchkin in for the night. I left him in the very capable hands of the PICU nurses, and made him promise me he would have a good night, because when mommy leaves is when he tends to be naughty!
He's doing so good, he never ceases to amaze me that his little body can endure so much. Like normal they had a really hard time getting an IV. They really didn't want to go deep, because he's supposed to be able to go home tomorrow. They finally found a tiny vein, and so far its holding up ok. They just stopped his IV fluid, because he's starting to sound wet. Exactly what I told them, only hours on IV fluid goes straight to his lungs. He's on very slow feeds, and he gagged before I left, so I hope they are able to keep going up on feeds tonight. He's getting lots of pain meds, his heart rate has been super high, and he makes his "I'm hurting face" a lot.

The VNS surgery was uneventful. We'll make an appointment with neuro in a couple weeks to have it turned on.
The bronch showed severe narrowing in his airway not held open by his trach. They are making his trach another centimeter longer, but I know thats not going to help. He showed me pictures of his airway narrowing down where it branches into the lungs. We'll have to wait for the trachs to come in, and continue to wait to see if it helps (I'm not holding my breath!)
As I was driving home it finally hit me that I was up at 4 am. I'm barely keeping my eyes open. I'm going to bed so I can go up and hopefully bring my little man home tomorrow!
Now, pictures.

Jax is done, he is in PICU, sleeping peacefully on the vent. The surgery went well, and they are just going to restart feeds slowly and work on pain meds he can go home on. We have to watch the one incision on his neck because its under his trach tie. His bronch was done by a different doc than our normal. He showed me pics of his airway, and how narrow it is all the way down to where it branches into the lungs. He said to make the trach another centimeter longer, but I really dont think that will help, just like it didnt last time. So we'll just have to talk to our ENT when we can! Thanks again for your prayers!

They just took Jax back about 10 minutes ago

Monday, June 20, 2011

My great special needs find!

I have gotten so many great idea's from other special needs moms, that I thought I would share my great find for Jax.
We got Jax a new stroller on Saturday. We have been using the same one pretty much since birth, so its pretty worn! Although it still works great. He does have a special needs stroller/wheelchair, but I like a regular stroller for around town. His SN stroller is like a wheelchair, its super heavy, wide, and just not practical. I only use it for Disneyland (because some of the staff are dumb and won't recognize a regular stroller as a wheelchair!) And if he ever goes to school, he'll use it then.
I always take my time finding a stroller for him, because it needs to fit all of our equipment. We went to Babies R Us, because they always have the biggest selection. I was actually a bit overwhelmed, because I saw a couple of new strollers that looked like they would work great, but they were 4 and 5 hundred dollars! Yikes! We decided the one that looked the best was this Jeep Liberty stroller. It was only 150.00, so not too expensive. And when we used it for the first time yesterday at the mall, I really fell in love with it!

Here's what I fell in love with. The basket underneath is huge! I was able to put his suction, feeding bag, and oxygen all underneath with no problems! A medically fragile moms dream!

Since Jax doesn't sit up straight, he falls over, even while laying down. Yes, this kid has ZERO trunk support! I still have to use one of those baby head inserts to keep him sitting up straight. The one thing I'm starting to worry about, is Jax is getting to tall for most strollers. That seems weird to me, since the kid only weighs 25 lbs. His trunk is the size of a 3 year old, his legs a 2 year old. Like most DS kids, his trunk is long and his legs are short. So any moms of older kids, we may need your advice on strollers when his head doesn't fit anymore!

I love this! The stroller has a basket in front as well as the back. His oxygen fits perfectly under the front basket, and I can keep all his tubing there, and its not falling off the sides. It would only fit a C tank. If you had a D tank, you'd have to use the back basket.

Although I don't use this, because he won't play with it, and it makes it more difficult to get him in and out, it does come with a tray and a toy, if your child can use it. If this was Arina's stroller, I would leave this on.

A view of the huge basket underneath.

What really made me excited when I first used the stroller, was how the back seemed to be meant for my suction machine. (I know, I'm easily excited!) It fits perfectly right there, and its out far enough that if I lay him back, I can still easily access it!

So there ya go, my recommendation for a stroller for a medically fragile child!

Jax has surgery tomorrow, I'm not sure what time yet. I'm hoping we don't have to check in at the crack of dawn! I will update here and on facebook every time I get an update from doctors. The surgery is supposed to be at least 3 hours, probably longer since access always takes time before they can even get started!
Your support is greatly appreciated, I love knowing that he has so many people praying for him. Especially since I will be up at the hospital alone. Your comments are comforting! I have the greatest followers and friends!

Just got word that we are first case. Lovely, so he will go back at 7:30 am. We have to be there at 6. I better get the coffee ready!

Saturday, June 18, 2011

Welcoming home another Ukrainian princess!

Yesterday we got to go welcome home a fellow Ukrainian princess! Beautiful Mia and her new mommy and daddy came home, and I am lucky enough to live close to them and got to go to the airport.
It was so amazing. Our homecoming wasn't quite as fun, as daddy and Arina came home at 11 at night, so most friends couldn't come to the airport. Mia was so cute, she loved all the attention, and just gave hugs to anyone that came within arms reach!

Beautiful Anya, from Russia, and her mommy came too!

3 Reece's Rainbow mommy and their girls. A forever bond we will hold, of this amazing experience!

Thursday, June 16, 2011

Summer happiness

I have the most beautiful family ever! I'm already loving school being out, staying up late, and playing all day. Blockbuster is doing a promotion right now, where if you rent a new release, you get a movie free every day, until July 4th! You only have to rent the new release once. So every day, we trot in to Blockbuster, taking turns picking a free movie for the night! I swear by July 4th, we'll have seen everything in the store!

Mondo, although going through the typical teenage/junior high attitude, is ever so sweet. The last week of school, he had his year end concert. He is learning to play the violin this year, and I think we are going to buy the violin, because he is serious about continuing to play.

The last day of school for Tanner and Carter was bittersweet. Tanner's teacher, Mrs. Jo, is my favorite teacher ever! She has a love for special needs kids, and even has a DS granddaughter! She has all the special needs kids in her class, what would seem like a daunting thing! But she has gotten Tanner to stay in his class 90% of the day, only going to resource for an hour. When he first started at this school, he was in resource the majority of the day. Mrs. Jo wanted him in her classroom, interacting with his peers, and he had a fantastic year! Oh ya, and she is crazy tall!!

Carter's teacher had a hard time letting him go, like most teachers do. They love him because he is so helpful, and so sweet to everyone!
I had an interesting appointment with him yesterday. His and Tanners asthma is not well controlled at all. Unlike all of Jax problems, I knew at least one of my children would more than likely be afflicted with asthma. It is genetic in daddy's side, almost everyone has it. I can hear them wheeze when they are asleep at night, and Carter is struggling in baseball practice, often needing an inhaler after running. My ped said to take them to an allergist. I don't know why I didn't make the appointment for them both at the same time, maybe because we were talking about Carter and baseball, but this appointment was just him. He tested him for basic allergies. No food, just all outside stuff, and mold and dust mites. He reacted to everything but 3! So he's basically allergic to everything outside, common in asthma kids. His lung function was 53%, and only went up to 58% after albuterol, showing that he has had chronic inflammation that is not reacting anymore to albuterol. So we switched his flovent to advair, something I didn't want to do because advair is quite strong, but we had no choice. We are hoping to avoid allergy shots for now, so he gets a nasal spray, and we'll hope that these two drugs will help keep him breathing easy! Tanner is next up for all these tests, and I'm guessing that it will be advair for him as well!

Jaxson, oh Jaxson! Surgery coming up in less than a week. I will be up there alone, since daddy will be working in Cali. I did find out that my friends son is having his open heart surgery on the same day, so I'm excited that we will be there together, worrying! I'm also really happy because she doesn't have much family support, and although this will be his 5th open heart, its been a couple years since she sent him to the OR. Understandingly, she's nervous, and I'm glad to be there to support her.
I called our trach/vent coordinator about Jax. We talked about the fact that his narrow airway causing him to cough is not getting better. We think that his blue episode for Auntie Boo when we were in Ukraine was from him actually collapsing the trach with his airway. Crazy stuff. I told her we need to look harder at fixing it, because if I'm not going to get a single second of nursing help, than I can't be up all night with him, and function during the day. She agreed! She wants him bronched. So when he has surgery Tuesday, ENT will bronch him, and take a good, long look at his airway, and if something needs to be done to it while he is still trached. We thought airway surgery wasn't going to be needed unless we took the trach out. Now we may need it sooner.
Always something with this warrior!

My little peanut, my princess, amazes me everyday! You have no idea how fun it is, after 8 years, to have a toddler in the house again. To walk into the kitchen and have all my drawers emptied. To have someone pulling silverware out of the dishwasher as fast as I put it in. She is so busy, and so curious, and we could just eat her up!

Oh, and the best part....daddy comes home tonight!!

Tuesday, June 14, 2011

Finally I see the rainbow!

Even though I'm tired from 3 sleepless nights with a coughing child, I am finally seeing the rainbow that comes after the rain!

And man, its been a long rainstorm! Like a 4 month long rainstorm!

I got a call today from my IRS advocate. The IRS has closed our account, and our money will be deposited THIS Friday!
This Friday! Now I can finally get this house on the market, and we can get down to Cali with our daddy we miss so much! I can get us a house rented, so daddy finally has his own space, no more living out of a suitcase, and we have a place until we are able to buy a house down there!
A dumpster is being delivered Thursday (I had this rented months ago, June 16th was their first available) so we can get rid of a lot of stuff. I still can't go down to Cali until after Jax surgery next Tuesday, and Carter still has a couple baseball games to play. But after that, we will be in Cali, looking at area's to live, and interviewing peds (that's going to be hard!)

Since this is a fantastically happy post, I have to add some pics of a princess!

This girl is determined to be just as dirty as her brothers!

I used my mad mommy skills, and busted out these cute bows to match her outfit in 10 minutes flat! New record I think!

Sunday, June 12, 2011

Thing One and Thing Two

Can I just say how much I hate trachs! They completely take over your life. It's much harder to take Jax anywhere (although we don't let that stop us!) And I swear I've gotten less sleep in the last year and a half, than in my whole life!
Jax was back to his incessant coughing last night. He coughed even in sleep, which meant I was sleeping on his floor because I had to suction him constantly. We never did get our lidocaine neb, ENT wouldn't write the prescription, because he couldn't remember the dose. Our trach vent coordinator was out of town for the week. Luckily it had started to get better, but now its back again!
I took him to the dentist the other day. He is trying to get Jax back molars to come in farther so he can put a cover on them. The hope is when Jax grinds his teeth, he is not grinding the front teeth down, he is grinding on this cover. His front teeth are about halfway gone, and if they get much lower, he is going to hit a nerve! But his teeth take forever to come all the way in because Jax has never eaten by mouth. His plan was to watch the front teeth closely, to make sure he doesn't get down to the nerve, and still try to get those back molars to come in. He said there is a surgery that they can take some of the gum out, but that is really painful. When I told him he was having surgery on the 21st, he wanted to try and piggyback with neurosurgery and clean his teeth, and go ahead and try to put a cover on those molars. But when I talked to neurosurgery, they said no way, especially not dental work!
When you do dental work it introduces bacteria to the body, and with putting hardware in Jax chest, she said that was extremely dangerous. She also said with this big of a surgery, neuro would not allow it. I'm getting a little nervous about Jax surgery. It's turning out to be a bigger deal than I thought, and there is a lot of stuff neurosurgery is concerned about and will be watching with him. So on the 21st, please keep Jax in your thoughts while he has surgery!

Since the weather has been so nice, I took Jax and Arina out front to play on the grass. Jax LOVES to be outdoors when he can. It was hard to get good pictures, the sun was so bright, both kids kept closing their eyes!

But I think I have a great new nickname for them both, thanks to Universal Orlando!