Tuesday, November 30, 2010

Jaxson's belated birthday post!

Jaxson's birthday was the Saturday we were driving down to California, so I missed his birthday post. Thats ok because we are going to do it today!
This last year started off rocky, like most years do for him. The end of January brought 12 days in the PICU with a respiratory virus. We went days without seeing his beautiful eyes, and we wondered if this would be the virus that his lungs wouldn't be able to recover from. Of course he did, because he is the most amazing little boy I know!

We also lost a lot of dear friends this year. All right around the same time. One, sweet baby Carter, I had the pleasure of kissing his sweet face before he earned his angel wings! Our dear Carly, and Ben, also earned their angel wings. And of course our beautiful Kristen, after battling leukemia almost her whole life. I had the honor of attending her funeral!

Despite growing respiratory problems and high pulmonary pressures, we enjoyed every day. And played in the sun as much as possible!

The adoption of baby Arina consumed life. We committed to her in April, and in August, finally had our dossier submitted. While we waited for our SDA date, Jax crashed and burned big time!
He was ambulanced from our peds office to the PICU with heart failure and respiratory failure. He required IV heart meds to keep his heart pumping effectively and keep his blood pressure stable. Thats when they finally started him on PH meds, and the ventilator at night for home. It was a scary thing to have happen when we knew we'd be traveling out of the country soon!

But after getting the vent at home, his health greatly improved. The vent was just what his little lungs needed to function properly, and he was our happy boy once again!

We went out of the country in September, and Auntie Boo took on all of Jax crazy daily cares!
Of course he had to keep her on his toes as well, plugging his trach, causing him to stop breathing, landing him another ambulance ride. Thank goodness auntie Boo was there, and his girlfriend Kayla, her daughter, was there to comfort him! We also discovered Jax crush on Kayla this year. I'm not kidding, he smiles and goes ga ga like I've never seen before. When she talks to him, he melts, its the most amazing thing to watch!
Sorry for the poor quality, these are cell phone pics!

Jax got his baby sister the first of November! A baby sister that shares not only his extra chromosome, but the same beautiful almond eyes, and same sweet disposition!

Mickey Mouse, his favorite character, was the highlight of Jax birthday week. Happy belated 5th birthday to my amazing, miracle boy!!

On Jax birthday we stopped to see grandma on our way to Cali. They all look so lovely because we had been in the car forever, in jammies, without showers!

Arina had her first time in a hotel room,

and her first trip to Disneyland! Of course we had to get her a first visit pin to wear proudly!

Mary Poppins and Burt were the first characters we saw, leaving first aid to drop off a tank. Arina's first picture with characters! She loved Mary!

She also loved all the rides. She never cried, and was looking around wildly at all the bright colors and pictures!

She also thought the tram was pretty dang cool!

I was amazed at all the beautiful Christmas decorations. Tomorrow I'll post pics of those. I embarrassed my poor kids, freaking out about the Christmas tree, and all the beautiful lights!
Sorry boys!

I just discovered that another dear friend was lost while we were away. Our sweet friend Jonas lost his battle to SMA last week. I'm so angry that I wasn't here to attend his funeral. I used to work at the childrens hospital with his amazing daddy. I can't imagine their pain, and their sweet new baby girl has the same disorder that her big brother did. Please go to their blog and leave a comment for his grieving parents!

Monday, November 29, 2010

We're back!

Hi there, we are here, we are still alive! I didn't get a chance to post before we left for Cali, and I didn't take the laptop with us, so there you go, a week without posts! Arina was an angel, and she had a blast on her first Disney trip. Loved the characters and all the rides. Haven't heard much about Jax MRI, just that it doesn't look too much worse, not great news as it doesn't give us an answer. Waiting for cardio and hemo to look at it.
Lots of pics to go through and post and lots to talk about, but first a more pressing issue. You know I don't like to post about the nastiness these blogs can bring. And the stupid comments I usually just leave alone. But when people make it more personal than I have to say something. Someone, at least I think its all one person, is trying to cause a lot of problems for our family. I'm not going to go into all the details, but the most recent, and the final straw for me, is someone emailed Make a Wish and tried to say that Jax has already received a wish. First of all, Make a wish keeps records, so they would know if we tried to get two wishes for him. We've been at this wish thing for a long time, because the adoption has been delaying everything in life. But Jax has never had a wish, this will be his first. And I'm done with this persons nastiness. This is now against the law. Its harassment, and making false claims, and I've now been in touch with the internet task force, and the police, if they feel it necessary. They've already been very helpful, and hopefully we can get this taken care of quickly. Again, I'm not putting my blog private. We continue to meet fantastic people, and share great information with each other. If this person is reading this post now, you better stop, because we have emails, and a few names, and I'm not going to sit around and let this continue. If its multiple people (shuddering right now!) then we'll find that out too! So you better just stop now!
Of course I send out my love to all of our great friends! Kisses from us here, mmwwwhhhaaa!

Thursday, November 18, 2010

The queen of barf!

I am having so much fun dressing up a little girl. Its so nice to have pink in the house, finally!
But we have found that not only is Arina the queen of aspirating, she is also the queen of refluxing! We have started prevacid, and we will continue to watch and make sure she doesn't get frequent pneumonia, or we will probably end up with a nissen.
Don't let these pictures fool you, so looks so sweet at first.....

....and then she pulls this trick!

Again, don't let this sweet face fool you....

....she is now confined to a towel or blanket for at least an hour after she eats. This is to try and save my carpet from an untimely death!

And save her big brother from a face full of barf. Because now that this girl has discovered her big brother, she insists on kissing him all day long! Which also means her milk usually ends up on his face as well! He is such a good sport, but even he draws the line on barf in the face!
An hour or so after she eats, she is allowed to kiss all she wants!

Tuesday, November 16, 2010

The amazing Jaxson!

This morning I was feeding Arina her bottle, Jaxson is laying on the floor, and I notice a weird new movement. As I am watching him, it looks like he is grabbing his oxygen tube, and moving his arms like he is playing with it! At first I thought he was just getting it caught on his hand, but he reaches for it again and again!
Never, ever has he done anything like this. We have been trying to get this kid to hold toys or reach for toys for years! He did it again and I grabbed the video camera.
I can't believe it. Is he really doing this? It makes me wonder what he will be able to do in the future. I glimmer of hope!
You can't tell me this is not purposeful!

Jax will need your prayers this Friday. He is having an MRI of his chest and neck to look for new clots, or more narrowing of his big veins. I'm not worried about the MRI itself, the trach helps us with anesthesia, no more worrying about getting him extubated. Its so helpful with procedures and surgeries like this. Although I do hate putting him under so many times. Nothing like an addict baby! Just kidding, he's been through his rehab of methadone and ativan, and now he's clean! ;)
I'm just worried about what it is going to show. I hope I can get some answers that same day.
As soon as the MRI is done we are heading out of town, down to Cali for Thanksgiving. Arina's first time at Disneyland, I can't wait!

Monday, November 15, 2010

Two weeks ago!

Two weeks ago today was Arina's gotcha day! Two weeks ago she was this somber child. This somber child that was left to live in deplorable conditions simply because she was different.

The only picture we have of the room, and the other children that Arina lived with. They never allowed us in this room. Daddy got to see it the day he rescued her. The baby in the crib in the back, Ray wants to go back for. Her grandpa goes and sees her every day. But he is not allowed to take her because he is too old. So they would rather this baby grow up in an orphanage than with family!

Daddy! Bye bye orphanage!

First time in a carseat! At least they had one for her. Their driver had a baby, and he brought her carseat for us!

Wow, a computer! In daddy's apartment in Kiev!

Just two weeks later, she is this smiling, happy baby girl!
She is laughing and she's going to crawl any day now. She gets up on her hands and knees, and tries to go. I give her until Christmas, she'll be crawling by then!
You'd never know this sweet thing spent her first 13 months in an orphanage. Her parents gave her up simply because she had an extra chromosome. Look at what they are missing now!

Sunday, November 14, 2010

Fit for a princess!

Quick update on the feeding situation. As of right now we are not doing a feeding tube. My ped talked to a number of our doctors. The surgeon said we should wait since she seems healthy. Pulmo wants to see her next week, she wants us to check sats while eating, and try a nasal steriod, since we know he nasal airway is tiny. I'm willing to try these things to avoid a tube for now!

Yesterday we got a package in the mail. I had no idea who it was from, we weren't expecting anything. When I opened it I discovered it was princess cookies, from a friend who knows how to do girl parties in style! My dear friend Mandy and her beautiful girls!

So of course we had to give the princess a cookie. Since she didn't get a first birthday party, she spent it in an orphanage waiting for us to rescue her, we thought she needed to play with a cookie!
She wasn't sure what to do, so we gave her a little help!

Are my hands dirty?

Cookies aren't too messy, but we sure had fun with it!
Thanks again Mandy, for our beautiful cookies fit for a princess!!

Thursday, November 11, 2010

Lots to talk about!

Lots to talk about today.
Its been a long week, appointments every day. Most were appointments that were planned before Arina came home, some were hers. I don't think I've sat down once since Monday!
First the better appointments. Jax went to trach/vent clinic on Wednesday. He's doing good from a trach standpoint. Its clear he needed that trach, and needed the vent even more. Respiratory-wise, he's doing good! Our beloved Kris gave us some new, great attachments to make life easier with the vent. I hate the attachment that has the suction on it. It just gets in his face, and I don't use that suction anyway. This new blue one swivels, so if he turns, it turns with him. We've used it one night, and we love it already!
The new

The old

Also, he weighed over 25 lbs at the clinic appointment. I immediately called Lisa and told her we need to figure out what is going on with this puffiness. He has weighed on average 22 to 23 lbs probably for the last two years. He just doesn't gain weight good. Now all the sudden he's jumped to 25, and its all in his face and chest. So the plan with him is to get an MRI of his neck and chest. That is the least invasive way to see if he has any new clots, or if his SVC is narrowed off again. I need to call and get that scheduled.

Now on to the princess. We've been deciding what to do with this girl and her aspiration issues. My ped talked to one of the top speech therapists in the state, and she doesn't think we can get by without the tube. We will talk in depth tomorrow with her about what to do, but I think we are going to do a g-tube. The speech therapist said that it will take her at least a year of hard work to get her oral skills where they need to be before she can take liquids. An NG is not feasible for that long. Plus, there are a million reasons not to do the NG. They cause ear infections in our tiny DS ears, they cause oral aversion just for the fact that they can feel that tube down their throat. The g-tube is just the best option for now.
I'm really struggling with this. Although we knew adopting a DS child, that these things come with it. We just hoped that we would not have to deal with this with her. Really, its not a big deal. Its something so easy and fixable, and not permanent. Its just that we are having so much fun feeding her bottles. We are not sure right now what she can take by mouth. We are hoping to keep feeding her baby food, and just tube the liquid. Speech therapist also said that we can't thicken all her liquids as thick as she would need it. She needs to get some free water. Ultimately we will do another, more in depth swallow study to see exactly what we can continue to feed our princess orally. But I'm really sad about this!
I don't know if it freaks me out because I find we are going down Jax path. Although I know that is ridiculous! She will continue to grow and do motor skills with a feeding tube, I'm just freaking out I think!
Plus, she woke up with a fever this morning, and has had it all day. If this turns out to be pneumonia, then we know this toobie is needed.
I do think Jax see's his new sister. I find him looking at her when they are on the floor together. She has only made him cry once so far, and I found spit up on his head, so I would cry too if my baby sister barfed on my head!!