Friday, December 30, 2011
Wednesday, December 28, 2011
Jaxson has a big, bright mobile. This mobile has been singing him to sleep since birth. My mother in law gave it to me, and it has been in his crib since. Its made multiple hospital trips with us, because the hospital mobiles are just plain crap!
When we moved, I put the hanging part in storage, and took the base that plays the music. He didn't have a crib, but needed that music to go to bed.
When we were unloading the truck, one of the boys handed me this piece.
A piece had broken off his mobile!
Then in the house, Ray handed me this..
Another broken piece! Sheer panic set in! How can I fix this? Its got to be fixed!
I can't bear to part with this mobile.
I know it sounds ridiculous, but I haven't been able to find a mobile yet that is as great as this one.
And I think for me, its the sentimental value. Everything with Jax has a lot more meaning. Clothes that he grows out of, I can't bear to part with. This mobile has been through 6 years of some scary stuff with us, and I can't let it go!
I'm going to be pulling out some crazy glue, and maybe even some tape!
Being a medically mommy really does make you crazy!!
Posted by Lacey at 10:11 AM
Monday, December 26, 2011
What a fantastic Christmas! It was definitely weird, mostly for Ray and I. 75 degrees on Christmas is definitely not normal for us! Also having almost no family and not doing our typical Christmas day stuff was weird.
All that matters was we were all healthy and happy, especially a certain little one who is not often healthy! I kept waiting for it to happen, even in the middle of the night Christmas Eve. But it didn't!
Last year was miserable. We were in the ER with Jax until 3 in the morning, only to find out he had a fractured femur. A fracture we, to this day, have no idea how it happened. It also came with a new diagnosis of severe osteoporosis. His bones are that of a child with brittle bone disease. He was in pain and upset all day Christmas, and it made it miserable for me.
A few years ago he was sick in the hospital. I was hosting the Christmas Eve party, so I had to run home and do that, and then run back up to the hospital and try to convince them to let me take him home for Christmas. His labs were still wacky, and they fought me tooth and nail! But I prevailed, and he was discharged around 11pm Christmas Eve!
This year, besides keeping an eye on these yucky seizures, he was a good boy!
We left out our treats for Santa,
Which he took full advantage of.
Arina was so excited to see a big, pink bike!
She knew exactly what to do with the presents.
Jax got to open his presents. Toy Story stuff all the way for this superhero!
It was just a lazy day in our house, without the running around to the grandparents to do. We played our two new dance games for the Wii. I'm telling ya, its a great, easy way to exercise!
Posted by Lacey at 9:52 AM
Saturday, December 24, 2011
Wednesday, December 21, 2011
There's nothing more amazing than seeing the transformation of a child that was doomed to a horrible life and probably early death.
What an experience, seeing this country that I never thought in my wildest dreams I would ever travel to.
Yes it was also hard, I don't think anyone who has done it would say it was a piece of cake. That would be a big fat lie!
I posted a bunch of videos, from in the orphanage, to just yesterday, and the transformation is amazing!
I love this first video! Partly because she was so tiny and sweet, but you can see her starting to emerge from her shell before we even got her out of her country! The first couple times we visited her, she just sat there, staring at her fingers. In this video, we get a smile, and you can see she wants daddy to keep bouncing her on his knee!
Just a few days home. Big brothers already bringing this tiny girl out of her shell!
We get laughter for the first time a few months later!
Now the beginnings of a naughty toddler. A lot more mobile, and a lot more sassy!
Last week, now a walker, and best of all, a dancer! She would not perform for the camera though, the little stink. So at the very beginning you see her dance, and then she stops. In the second video its a little better, but she still won't perform as good for the camera!
(sorry for the shakes, I had to dance to get her to dance!)
We changed the life of a child. But more importantly, she changed our life!
Its utterly amazing!!
Posted by Lacey at 10:55 AM
Tuesday, December 20, 2011
I'm so angry right now I could spit!
A mother that has taken care of a baby for a year, has been denied the right to adopt him!
You may know that we are thinking of adopting again. Not for another 6 months to a year, but it is down the road. I've been really struggling with how I want to adopt. My heart is always with the beautiful children on Reeces Rainbow. I go to the website and want them all! But I also would like to adopt a child right in our own state. A child that is in the system and has also been left behind because of their medical need. I know in the foster system, the idea is always to try and reunite a family if at all possible. I was telling our home care RT the other day that wouldn't it be great if I could take a child, and slowly train the family how to do oxygen and feeding tubes and such, so they could eventually do it on their own? She thought that was a great idea, and thought I should bring it up!
I'm a little hesitant about the state systems though. You know what happened in Utah when we tried to adopt a baby. We were denied without even getting a chance. The social workers never even met us in person. They just assumed, with no medical background, that we couldn't care for this baby with Jax. A baby that had no feeding tube, no oxygen, just severe brain damage that they assumed left her with NO brain function. No brain function in a baby that ate from a bottle, smiled, and cooed!
I was heartbroken! Knowing this baby would not be that difficult to care for, and especially to love!
People ask why we adopt internationally, instead of in our own country...This story that made me so angry is a huge reason why!
The family of sweet Ethan, a Down syndrome boy with a lot of medical problems. I was first sent her info when they were talking about traching him. People thought that maybe I could help this family with information. They have been taking care of him for a year. When talk of a trach came about, the social workers told them he would be too much work, and they would deny the adoption. Ridiculous! You just assume families can't take care of complicated children? Its not that hard people. It makes me crazy to think that people with no medical background are making these decisions in a childs life.
Poor Ethan has been denied a transfer to Boston, where they could have helped him, and most importantly, where the family would have been able to proceed with the adoption. Now a child is going to lose the only mother and family he's ever known. How is that in the best interest of the child? A baby girl could have had a family, 4 doting big brothers, but was denied that by uneducated people.
This is why we adopted internationally. Yes, there are children here that need good homes, and you better believe that I, and many other families, are ready and waiting. But the system is failing them! The other reason is these children in other countries with disabilities, are doomed to an early death. They are neglected and left to rot in institutions. That is just plain wrong!
You think I'm a busy momma? Yes, I'm a busy momma, and I wouldn't have it any other way! My children are all taken care of, they are all given time and the love that they need and deserve. We are silly, we sing at the top of our lungs in the car to Katy Perry. We dance to Michael Jackson. We are a close family. I'm told all the time by strangers that my boys are great, when they get the door for me and everyone else at a restaurant. If my boys are around, no women will ever open the door for herself!
Seeing the joy on this face is priceless.
I can only pray for baby Ethan, and his poor family that has to walk away. I know I couldn't just walk away, how hard must it be?
Posted by Lacey at 9:57 AM
Sunday, December 18, 2011
I know talking about Jaxson and what is going on with him sometimes seems like groundhogs day. That or its just over your head and you get bored. I know this because I am major ADD, and if it doesn't interest me I'm quick to pass over.
I notice a lot on Facebook (although I'm not a huge Facebooker!) that my posts about my cute princess generate much more chatter than if something is going on with Jax. I know she is super cute, but sometimes Jax just needs those extra prayers! And with him, its not a ton of cute antics, unfortunately!
Like right now. He is being a naughty, naughty boy! My ped finally called me back, and while I was upset at how long it took, she did bring up a good point. The airway issues, in this case, is probably reflux. I don't know why I didn't think of this before! She asked about allergies, which I can safely say is not the case because we know he tested negative for EVERYTHING! But when she brought up reflux, I remembered that his nissen is not working, and that we are feeding him into his intestines because we can't trust him not to aspirate. So more than likely he's refluxing stomach acid and aspirating on it. Fortunately, the one specialist I do have an appointment with is GI. Hopefully we can get his nissen fixed quick!
He is breathing much harder than usual, and we aren't exactly sure if its because of the reflux problem. One thing with Jax, because of his severe hypotonia, he breathes super shallow. We had to turn off the alarm on his vent for low volume, because it has such a hard time sensing his breathes that it alarms all night long! That is also why his lungs have improved so much with a rate on the vent. He gets those breathes automatically, and not just sporadically when the vent "thinks" its sensing him! His sats have been really good, and we believe that is because he is breathing harder and actually getting more oxygen in. Although they are starting to drop, and he is going to start to tire of breathing this hard, if he hasn't already. I've had to leave his g-tube to drain, because when he breathes hard, he swallows air, and I'm getting tons out! Tomorrow I may recommend a blood gas, to make sure he is not starting to hold onto CO2. Its actually a nice thing to have life support in your own home. That way I don't have to take him in!
The other, scary thing....I'm starting to see more seizures. I was told the VNS could take up to 2 years to show the full effect. He hasn't had an EEG since having it placed in June, but the magnet is having no effect on these particular seizures. Jax has so many different types of seizures, that the VNS may actually be helping, but not for this kind. The scary thing is, the kind I'm seeing is the kind he had that got worse and worse until he was in status. So seeing them getting longer, has me terrified that we will be in that awful place again! Neurology here is so great, and I know they have a lot more tests to offer than he ever had done in Utah, but the referral process is dreadfully slow. We don't even have an appointment with them yet. If I get too concerned, I'll just take him to their ER, that way they have to see him on the spot!
I'm wondering if we need to restart the ketogenic diet. I hated that diet, but I'd rather have that then these seizures. We aren't sure if the diet stopped the seizures, because it was started before he fully woke up from his medical coma, but they have gotten worse since stopping the diet a year ago. And actually I'd rather have the diet, and the VNS, and be able to stop some meds that we know aren't really working anyway!
Jax is in desperate need of some tuning up! Lets hope we can get these specialists scheduled ASAP!
Posted by Lacey at 8:49 PM
Thursday, December 15, 2011
Well folks, its official
We have a walker!
Heaven help me! I've already found her on the computer table, and on the kitchen table eating ginger bread houses!
Time to pull out the play pen!
*and the bottle of pills in her hands?? I took an old bottle and put candy in it, because she likes to shake it. Its what I do to keep her still while doing her hair! A homemade rattle!
** Oh thank you, my anonymous friend! I didn't even think about her associating pill bottles with candy! Although she doesn't eat it, she just shakes it. I never take the lid off. I need to find a different bottle that makes great noise! It really has been 9 years since I had a toddler! Sheesh!
Posted by Lacey at 9:21 PM
Wednesday, December 14, 2011
Yesterday was my birthday. Happy birthday to me!
Look what my fantastic hubby gave me for my birthday!!
Let the blankie making commence! My old machine had tension problems. This will be so nice!
Because life in the medically fragile lane is always an adventure, I spent my birthday screaming at the peds office, and looking for a new doc, yet again! I first made a phone call to the ped last Thursday. My call was never returned. Friday, Monday, and then yesterday, still no phone call. I told this ped in the beginning what I expected from a doc. I can't have 4 days of no return phone call. Just can't happen. I left a nasty message last night. The girl that called me today said the doc has in her notes that she left me a message yesterday. I do get terrible reception at my house, and my phone doesn't always ring. But it always goes to voicemail. And if it took her to voicemail and she left a message. I would have gotten it. So I tend to not believe that excuse. I also told her that even if she did call yesterday, 4 days is not acceptable for a return phone call. I'm going to end up in the ER with him in the next couple days. He can not go 2 months without having his lovenox level checked. Yesterday after his bath when I was cleaning around his gj-tube, a small cut started to bleed profusely! That leads me to believe that his lovenox level is off, and his blood may be too thin. Also, he's having some airway issues. Whistling while breathing, blood tinged junk, and really heavy breathing. Since I don't have a specialist here yet, the only way to get this and the lovenox level checked stat is to go to the ER. I really, really, don't want to have to find a new ped. Is it wrong of me to expect that any ped would do the things I want? Isn't that why they go into the business in the first place! A phone call the same day is not unreasonable, especially when the first day I called, I saw her in Toys r Us on her lunch break. Uh, where was my phone call?
On to cuter things!
I found out yesterday, that you are never to old to clip on a towel and be a superhero!
To fly into the night....
and rescue the maiden in distress....
To take her away in your fancy car.....
And get that thank you kiss...
The dreamy look as you fly off into the sunset..
Where did my superhero go?
*sidenote. This girl always has a rash, it must be a DS thing, no?
Posted by Lacey at 11:33 AM
Monday, December 12, 2011
An amazing young women that has been quietly following my blog for a long time emailed me. I love it when I can find new people and new blogs. So if you read this blog and never comment, do so, because we love new friends!
Anyway, her name is Nikki, and she has traveled all over the world, working with orphans. She is working on a degree to work with special needs kids, and in December, she is posting on special needs. Todays post is about Jax, and the care that he requires. Go to her blog and check it out, along with all the great things she has done!
She also asked me if I still make blankies. This summer, she is traveling once again to India, and she wants to take a blankie to this sweet baby Emma. Oh how I would love to see this tiny thing wrapped up in one of Jaxsons blankies. That gave me a great idea! I want to make a bunch of blankies to send with her for the other orphans. If you know how to crochet around blankies, or would like to buy some material and donate it, email me at email@example.com to find out how.
I love to see how Jax has touched peoples lives. Saturday we had Jax picture drawn. I wanted a picture that shows Jaxson underneath all the tubes and his broken body.
And here it is! This picture shows Jax heart, and his gorgeous smile. That a true superhero is indeed under that broken body, and that is why he is still here, and still fighting!
To infinity, and beyond!
Posted by Lacey at 11:46 AM
Friday, December 9, 2011
Have I ever mentioned??
How much I love, love, love having a little girl?
How its everything I ever dreamed it would be from back when I was pushing my dolls around with my mom!
The other day it was just me and her in the car, and I cranked up the Katy Perry. She actually sang along with me! Ok, she can't talk, but she baby babbled along with me to the song. I can't wait until I can get her into dance. She just needs to be a bit more steady on her feet. Maybe next summer!
She understands the things I do. Like why I love my new front loading washer and dryer. Ok, maybe not exactly why I do, but I agree the spinning clothes are fun to watch!
I'm feeling that one more little girl needs to join our family. Me and the hubby, and even the boys are feeling it.
Not yet of course, not until I'm settled into my own home for a while. But it may be on the horizon!
Posted by Lacey at 7:24 PM
Wednesday, December 7, 2011
Another day we missed with no internet was our anniversary on Nov.15. 14 years! Wow, didn't I just graduate from high school??
I had forgotten that it was getting close, with all the chaos. But my sweet hubby didn't, and he had asked for the day off work. So what did we do? Headed to Disneyland, of course.
It was the best day at Disney we have had in a long time. It was a Tuesday, so it was super slow. Tons of characters were out, and we just had a great time!
My Beautiful boys!
Arina and her first princess picture!
Ok enough characters already, lets hit the rides!
Another first for us. Ray, Carter and I got stuck on Big Thunder Mountain! The ride stopped right on the hill. This ride freaks me out a bit anyway, because its the only ride at Disney that has had a death of a person that wasn't the persons own stupidity. For some reason I always think about that when on the ride. So stopping in the middle and having to walk off wasn't such a good thing for me!
For our anniversary we had dinner at Goofy's Kitchen, our favorite place!
I love that the characters are so sweet with Jaxson. Its like they know they have to get really close to him so he can see. And they always spend so much time with him.
Arina wasn't so fond of the characters. The ones that she could see a face, she was fine. But the big, furry ones, not so much!
This picture is my favorite! Tanner is not so fond of kisses from girls!
I wanted to bring this Minnie home with me. She was sooo cute with Jax! She grabbed his hand and put it on her face so he could feel her! Be still my heart Minnie!
And this is why Disney will always be such a magical place for our family!
Posted by Lacey at 10:33 AM