She this beautiful redhead? She has a disease that will significantly shorten her life. Her little body can't really do anything, but smile like she does so beautifully. She just received her blankie, from our blankie project.
Every once and a while I repost our blankie project here, so new readers can learn about it. We make blankies for children with life threatening illnesses. Click on any of the blue blankies to go read about these brave children. There is an order form there, if you know of a child that would benefit. We just sent out our 200th blankie! A major feat, I think!
Here are a few other hero's that got a blankie.
This is our original blankie video, when I have time, I'd like to update it, but it will pull at your heartstrings, promise!
Sunday, October 30, 2011
She this beautiful redhead? She has a disease that will significantly shorten her life. Her little body can't really do anything, but smile like she does so beautifully. She just received her blankie, from our blankie project.
Posted by Lacey at 1:07 PM
Thursday, October 27, 2011
My beautiful princess is the most amazing little person! When we first talked about adopting another special needs, I had to do some real thinking. I've always wanted a little girl. I was a dancer. Drill team and dance pretty much ruled my life all through high school. I wanted a little girl that would enjoy dance like me.
Would a little girl with Down syndrome be able to dance?
Would a little girl with Down syndrome go shopping with me, and be my best friend?
It was in this wonderful world of blog friends that I realized that indeed a girl with Down syndrome would be able to do anything any other little girl could do.
Arina learns so much every day, and I can't say that some type of early intervention or therapy has helped her. She did get early intervention in Utah. But that was two days a month for an hour. Basically she came, asked me what Arina was doing now, and did her testing. Thats it!
We will get her into whatever she gets here in California, and of course preschool when she's 3. But everything she learned, she learned from us and her own determination. She is going to be a true walker in just a few short days. Now that she knows how to stand alone, she is walking all over the place!
She's got a few new tricks that I showed her once and she's mastered. The girl gives knuckles like a real gansta!
And this one is a video I need to get and post, because I'm telling you, it will make you cry!
She tickles Jaxson.
I tell her, tickle tickle tickle, and those little fingers are a going on Jax's belly. The love she has for her big brother is unlike any I've ever seen!
Here she is sporting her cute halloween pretties from her bestest auntie Steph!
Oh, look, there is a princess in there!
The only problem is the skirt is way to tempting.
I mean, those pumpkins look scrumptious!
Yep, just like I feared. Way too much fun to play with, not to wear!
Posted by Lacey at 9:52 AM
Tuesday, October 25, 2011
Jax has been all consuming the last few days. The times that he sleeps I use to get done whatever I can! He is so junky, that it's non stop suctioning except for the short times that he sleeps. If I didn't have robinol for the junk, and trazadone to help him sleep, I'd be nuts!
We saw his new ped yesterday who did a trach aspirate and swabbed his nasty g-tube site. She was very nice, and she seemed like someone I could talk easily too. The one thing I didn't like, that I'll have to talk to her about, is she brushed off my concerns onto other doctors. I feel like my ped should know everything about Jax, so if another doctor has questions, there is one person that can answer everything about him. So the fact that she didn't really want to hear my concerns, and told me she could give me specialists names to call, didn't sit well with me. I was thinking she could write an order for a GJ button so we could get rid of this stupid tube. But she just told me she could give me GI doctors names. Grrr. I left feeling overwhelmed that I had tons of new doctors to find by myself.
Other bad news, Ray's credit is still too low for a home loan. We need to pull his reports and see what is and isn't showing on there. I need to decide if I want to give in and rent for a few months, which would be super expensive. But I'm tired of only have a couple weeks of clothes, and living out of my suitcase. I want my own place!
So for some good to this post, if you haven't already skipped the other crap! Look at what our princess is doing now!
Don't you love the bare belly and bedhead? Looking good baby!
You can't tell at all that this girl loves to show off, making sure everyone claps for her after her accomplishments!
Any day now, she'll be walking! Which is good and bad news for this momma!
Posted by Lacey at 7:23 PM
Saturday, October 22, 2011
Today I was going to do my big reveal with a great picture of the kids in their costumes because we had a Halloween party at Disneyland last night.
But I spent the whole afternoon at the doctors office, 4 hours to be exact. The only thing done there, besides going over his life story, which takes some time, was a chest x-ray.
He's had fevers, gagging and retching, and tons of junk the last couple days. We still have no idea where the fever is coming from. He doesn't usually get a fever with a respiratory virus. Ears are fine, throat is fine. G-tube site is red, and I've also suctioned some red tinged junk from his trach, so maybe an infection in one of those places? They didn't do a VRP because it wouldn't be back this weekend, so we watch and see if it turns into more. They have the dreaded paraflu and adeno virus going around here right now. Praying its not one of those, because both have made him super sick in the past.
A lot going on with the little man right now. Kind of makes my head spin. His new ped's head will definitely be spinning soon too! Right before we left our Utah ped said she thinks his pituitary gland is not working. A few clues that made her come to that conclusion. She found a lab from a couple years ago that showed his growth hormone level was super low. She pieced it together with some other things. His chronically super low calcium levels. Times where he seemed septic, and everyone panicked, and then he was fine. She said those were probably times he needed emergency cortisol.
His legs, especially his right, are crooked. It almost looks like he knock-knee'd. His legs come together at the knee, and then go out to the sides. Its from never bearing weight on his legs. I'm not sure if its something that needs to be fixed with him or not, since he'll never bear weight. His hips pop every time I move him, another thing with no weight bearing. Hoping those don't need to be fixed. He spine is starting to poke out. Scoliosis, yet another side effect of not being upright, ever! Lots of ortho problems.
If we ever hope to feed him into his belly again, he needs yet another surgery to fix his nissen. This would be his 3rd nissen in 5 years.
Needless to say, I was a little overwhelmed yesterday. I didn't get to do Arina's hair all cute, because we were late to the party, after spending so much time at the doctor. I knew that even with robinol, Jax was going to be a junky mess at Disneyland, and we would spend the majority of our time suctioning him, and the suction would have to come with us on the rides.
Sometimes I wonder if our lives will ever be normal.
No, they never will, and that's ok, because moments like this is what life is all about. Its why we keep doing as much as we can while we can. Its why we drag tons of equipment all over the place. Its why we work so hard to keep our little man alive. Because he is the light of our lives! And he deserves to live his life, seeing as much as possible. Why, even though he is so fragile, he is not locked up in the house 24/7.
A smile from a little boy that rarely does. A sweet Peter Pan that comes right into his face, where he can see him, and talks to him. Ignores the crowd behind us, and takes the time to brighten a little boys night!
So there you have it. Peter Pan and Tinkerbell are the costumes. You were right! We were going to do Mickey and Minnie, since I already have Jax costume, but its packed in storage right now!
I personally think Jax is a much cuter Peter!!
Posted by Lacey at 11:03 AM
Wednesday, October 19, 2011
We are entering our 4th week out of our house and being in hotels and family's homes. Its really starting to wear on me. Mostly its Jax. Having his supplies scattered everywhere, and no place to do his cares without breaking my back.
Friday we meet with a financial guy about a home loan. I'm just worried that our credit still isn't high enough. Its amazing how fast your credit is hit, but how slow they are to rebuild it. Our big financial breakdown was in Jax first year, thats almost 6 years ago. A month ago Ray's credit was barely too low. We are hoping that with now no bills, and open credit cards, that our debt to credit will change and his score will automatically go up. I'm telling you, opening credit cards was the biggest thing that raised his score. We never had cards before, and these are low limits, but its credit on your score, and it helps big time! Its a shame they look at a single score, instead of the fact that we have zero bills now, and a huge chunk of money to put down on a house. Fingers crossed we can get our loan, I'm ready to start looking for houses NOW!
Last Thursday we went to our sweet Emily's birthday party. I'm so excited that now we live so close to them that we can get together often. They are good friends of ours!
Look at all these gorgeous kido's
This is sweet Gracie, she loved Jax. She kept checking him out!
Emily and her great big brother
We actually found something she won't eat...broccoli!
Arina and Ella basking in the sun
The gorgeous cake
A DS friend needs your help. Her son is getting glasses, and she needs advice on what kind to get him. Please click on this link and help her if you have experience in this area!
Oh, and we go to a Halloween party at Disneyland on Friday. I'm going to reveal Jax and Arina's costumes Saturday morning in the pictures. So if you haven't voted, do it now!
Posted by Lacey at 10:03 PM
Monday, October 17, 2011
Sorry, I know I promised pictures last night, but instead I got a gagging, retching little boy with a crazy high heart rate.
He's doing better tonight, but his g tube is venting, and he has zofran on board. Not quite sure what he's up to, giving California a big Jaxson welcome I guess! Or just trying to make this momma crazy because she still has Utah insurance!
But here's some pics of the last week or so. I know this is what you want, its amazing how your blog traffic dies when no pics are posted for a while!
This is what little miss does for the camera now. Its her new "cheese" face!
Chillin on the floor together
Tanner is so funny. My autistic son won't go on very many rides at Disney. But he was so enthralled with the new Star Tours, that he loves it now!!
When your this limber, you can sleep anywhere!
My favorite little munchkin and me
Watching brothers down below!
Me and my princess!
Posted by Lacey at 10:00 PM
Sunday, October 16, 2011
Tonight I'm going to get on my laptop and get some pictures loaded. Lots to post.
Yesterday we went to sweet Emily's birthday party. Met lots of new friends.
Today we are going to hit Disney, hopefully its not to crazy because the CHOC walk was this morning.
i'm finding out about more programs here that Jax will qualify for, and his sats have been the best they've been in a long time! This move really was the best thing for him.
If you have a child with bad lung disease and/or pulmonary hypertension, and you live in high altitudes like Utah, I highly recommend moving to sea level. In just a week I already see a difference!
Pictures tonight, promise!
Posted by Lacey at 11:06 AM
Wednesday, October 12, 2011
A bunch of people asked if we were ok. We are. We dont have internet besides my phone. This hotel doesnt have free WIFI, and I dont feel like paying 11 a day for it!
Jax was discharged late Monday after he fully woke up from the sedation he didnt need. Today after schoolwork we decided to meet daddy at Disneyland. I dont have Jax special needs stroller because there was limited space in the car, and so we chose to take his regular stroller because I use that on a day to day basis. I guess one of these days I need to just give up and use the wheelchair. Disney is such a hastle without it. They never think he's handicap, even after seeing the tubes. Its draining explaining my handicap son every 30 seconds. His SN stroller is so bulky and heavy, its just a pain. People think you abuse the handicap system. Trust me, its not all front of the line stuff. There are rides, like Haunted Mansion, that we wait FOREVER to get on!
My son would much rather have his health than a handicap pass, and so would we!
Posted by Lacey at 11:28 PM
Monday, October 10, 2011
I promise one of these days i'll have cute pics to post. Right now I am just having a medically fragile mommy moment.
As hard as this has been, its also been a great learning experience. At 4 when the GJ still hadnt been placed, my Utah ped called the PICU resident. We got some insightful info that will help us in the future. CHOC doesnt have their own IR guy, they share with the adult hospital next door. I'll talk to my new ped here before making a decision (she is VERY good with fragile children) but more than likely CHOC will not be our primary hospital. This is all stuff we have to consider with Jax. That is why moving is a billion times more stressful with him. Dont get me wrong, CHOC has been fabulous! Super nice nurses, huge rooms, and I know if he was sick, they are more than capable of caring for him. Its just the small things we have to consider with him. Things like spending nearly two days in PICU to get a 5 minute procedure done. With so many different medical problems, we need what works best for us.
They made me leave when they did it, which I didnt like. But when I came back I see that they put in a huge GJ tube, not a button. This little, seemingly stupid thing has sent me to tears. Its a billion little things all meshed together that is my routine with my complicated child. Change something, and its like changing something on my autistic son. I wish there was a way I could truly let you see what I mean, but you'd have to walk a day in my shoes. I just know he is going to have this tube pulled out in days. Its big and bulky and sticks way out of his belly. I cant wrap a diaper around the g tube because the two ports are right next to each other. Just things to further complicate a complicated child.
With a dear friend in similar shoes, we talk about how scared we are. How we think about the future and what ifs. What happens when I cant lift him in and out of the tub anymore? Scary things for me to think about.
Tomorrow is a new day. The tears will be done, and we'll be ready to tackle the world again. I have a few more hours to pull myself together!
Posted by Lacey at 6:57 PM
Spending our first night in California in CHOC's PICU.
The ER wasnt the greatest, but I dont think there is such a thing with ER's. Its a dual ER with an adult hospital next door. They never got a history on him, which wasnt a biggy at first because we thought we'd get our tube and be on our merry way. Then we were told we had to stay the night because he couldnt get into IR for a new tube until tomorrow. The nurse came in to say she'd given report to the floor nurse, and I remember thinking, what report? You never got one from me! When we got to our room I mentioned the vent, and the charge nurse was like, ugh, we dont do vents on this floor. They were super nice and worked quick to get us moved. Their PICU rooms are ginormous! I can so handle these rooms, with a big parent bed and each room is seperate, no curtains in this PICU! Hopefully we can get the tube in bright and early. They are saying here they usually do sedation. But I will fight that simply because its unnecessary medication when its a 10 minute procedure he's had a billion times.
I guess we'd see the hospital sooner or later. Just didnt think it would be quite so soon!
Posted by Lacey at 12:31 AM
Sunday, October 9, 2011
30 seconds after arriving in California, I pulled Jax GJ tube out when getting him out of the car. The balloon was deflated, so it may have been bad, but now our first stop even before a shower is our new ER. Not really the first stop I wanted to make!
Posted by Lacey at 5:16 PM
Friday, October 7, 2011
We are done and we are home, I mean, hotel! No really,we are. I think this is a record post op for him. I went back to see him and he was wide awake. We were on our way a half hour later. His teeth actually look pretty good. One thing for kids that don't eat by mouth, they don't get the sugar, and don't get the cavities. He didn't have a single one. He did have tarter, but it was actually acting as a barrier to the teeth he was grinding. His gums are way down on his teeth, but he isn't going to mess with that unless he starts getting infections in his gums. All of his adult teeth are indeed behind his baby teeth, but because he's never eaten by mouth, those baby teeth are taking their time coming. His canine teeth on top are still not in. Because of this he probably won't lose baby teeth until later either. So we don't have to worry about loose teeth just yet.
When I saw the anesthesiologist after I said, "see, I told you he'd be fine. He's much scarier on paper than he is in person!"
Now we pack up because tomorrow, we are on our way to California!
Posted by Lacey at 3:21 PM
They took Jax back about 20 minutes ago. I'm not even kidding they almost cancelled it again! First it was the aspiration pneumonia he had a month ago. Then it was he should have missed two lovenox doses. I was shaking I was so mad. I told the nurse practitioner that if this was cancelled again it would not be pretty! Get your act together please. The anesthesiologist asked if he was healthy. I told her he would never be as healthy as they wanted him to be.
The hilarious thing is the anesthesiologist was like, does he really have Down syndrome? She didnt think he looked DS, and she couldnt figure out why he had the multitude of medical problems he did with just DS. This was the first time anyone has told me he didnt look Down syndrome! You get something new everyday I guess!
Posted by Lacey at 12:10 PM
Thursday, October 6, 2011
Tomorrow we try Jax dental work again.
Once again he goes under anesthesia for a simple procedure. Tis the life of a medically fragile child. General anesthesia is not good for them, but its the only safe way to get things done sometimes.
The hospital staff never fails to remind me of how scary Jax is. It honestly surprises me that a childrens hospital acts so nervous with him. After all, its what they do. I always thought the trach was to make life easier for an anesthesiologist, but it doesn't seem to be the case with Jax. It got cancelled in July because the anesthesiologist went over his files with a fine tooth comb, looking, it seemed, for a reason not to have to do Jax. And he found one. So pray tomorrow it gets done, and no more excuses are found to not have to work on my warrior boy!
In a life so full of pain, he always comes out smiling. So many pokes, so many uncomfortable things, and yet he still loves his caretakers.
This boy is so strong, and tomorrow will be no different!
Posted by Lacey at 9:03 PM
Tuesday, October 4, 2011
I have feelings, just like you
I like to swim, just like you
I have pretty blue eyes, just like you
I deserve a chance at life, just like you
I deserve a family, just like you
Don't hate me, because I'm beautiful.....just like you!!!!
Don't forget to vote for which Halloween costume you think they are going to wear!
Posted by Lacey at 6:20 PM
Monday, October 3, 2011
Our hotel room has a king bed, and then on the other side of a wall, a couch bed. I'm not normally fond of king beds, they are so big, I feel like I'm a mile away from my hubby. But in this case its been nice. Two boys sleep on the couch bed, one boy sleeps with me, and Jax sleeps on the other side of me. Arina sleeps in a porta crib.
I love sleeping next to my boy. He's never really been able to come into our bed and snuggle, he's always had too many tubes and monitors. Nights that he cries or is cranky, I pull a chair up to his bed and hold him there until he calms down.
Bonding can be so hard with a baby like that. When he spent most of his first year intubated and sedated, I felt so helpless. I would walk through the store and not complain that my baby was not normal like these babies...but complain that its not fair that they got to dress their babies, and take them to the store, while my baby layed in a crib in the hospital. Because of Jax medical problems, my insurance gave me a fancy breast pump. I never really was able to breastfeed my babies for long. My milk always seemed to run out after a few months. Carter was the longest so far, I was able to nurse him for 5 months with the help of a pill to increase my milk. With this super fancy breast pump, I was able to pump milk for Jax for 8 months. I only gave up at 8 months because bottles and bottles sat in the fridge at home and at the hospital. He had to switch to IV nutrition because of fluid in his lungs. That and the fact that there was no way after this long stay, that he would drink by mouth again. So I stopped pumping, and handed the pump back over to my insurance company.
Being able to snuggle for the last week with Jax has been amazing. A few small glitches, like even with the trach and vent, he is a super restless sleeper. So all night I'm super careful about moving too much, because it will wake him and make him stir. The other night he fell asleep with his hand on mine. I can't help but think that he felt comfort having his mommy right by his side. He can feel my heartbeat, and my skin, and he is loving that! And of course, so is this mommy!
I ordered Jax and Arina's Halloween costumes. I'm super excited, and I've put a poll on the sidebar. Lets see if you can guess what they are going to be!
Posted by Lacey at 9:03 AM
Saturday, October 1, 2011
October is Down syndrome awareness month. I can guarantee that with all the craziness in my life right now, that I will not be making the 31 posts. But here's a first try!
I was always around Down syndrome. My neighbor's niece had DS, and I was frequently around her. She was always fun, and I never saw her as anything different. Perhaps this is why I didn't go through the typical emotions when Jax was born. Or perhaps it was that I worked at the childrens hospital. DS kids were regulars for me. His medical problems didn't bother me. I knew in depth what his heart defect was and how it was fixed.
Jax started out very typical, and has slowly, over 6 years, grown more and more atypical.
This blurry cell phone pic is the only good pic I have of Jax beautiful smile before his brain injury locked it away. I treasure this picture as if I paid 100 dollars to have it taken. I can see his little personality, and the little person he was, before it was all taken away from him!
Jaxson has Translocation Trisomy 21. It only happens in 3 to 4 percent of all Down syndrome. The funny thing about translocation is he has the same amount of chromosomes on paper as you or me, because his extra 21st is attached to his 13th chromosome. It is the only type that can be inherited, although his is not. Mosiac is the least common, only 2 percent of Down syndrome people. It is thought to be a mild form, because not every cell is affected. Nondisjunction is the most common form of Down syndrome, 94 percent of all Down syndrome people. My geneticist didn't know if Translocation had more medical problems, it hasn't really been proven, Jaxson is just one of those unlucky few. He has Digeorge anomalies, although he doesn't have Digeorge syndrome. That just means that he has a few common things found in Digeorge syndrome, like hypocalciumia.
I always had a hard time being a huge advocate for Down syndrome. Partly because I am consumed by Jaxson's health (like spending 5 Buddy walks in the hospital) and partly because I have a hard time being all happy and trying to tell people how great DS kids are and then show them Jax. Not that he is not great, but he is very scary, and I hate to scare people to death by telling his story.
Jaxson is not a common DS child. A lot of DS kids will struggle for the first couple of years, with heart defects and such. But its not common at all to have kids be this fragile for this long. My geneticist also told me he had never, in 25 years, seen a DS child with this many medical problems, live this long. A hard pill to swallow, but a testament to my warriors strength and courage.
Having Arina has shown me a whole new side to Down syndrome. She is a DS advocate without even knowing it. Her flirtatious smile sucks in even the hardest of hearts. Walking through a store with her is not without many stops to talk and play with complete strangers. I can't wait to see what she will do. Drill Team, homecoming queen, nothing is out of reach for our princess.
Today we enjoyed the 80 degree October weather, and escaped the hotel to the park. Jax stayed awake this time, and had a grand time swinging, and going down the slide with his brothers.
Look at that tongue and windblown hair!
Posted by Lacey at 7:52 PM