What questions should you ask?

Our friend asked us to post what is good and bad to say to parents with children with special needs. So here it goes!

With Jaxson, I am happy to tell people pretty much anything they want to know about him. Of course, that's not the same for every parent, but most of my friends say they are happy to answer questions. I would much rather have you come up and talk to me or ask me a question than sit and stare at my child.

The biggest thing I hate is when a curious child walks up to Jax and and stares, or asks "whats that," and the parent hurriedly grabs their child and pulls them away, apologizing. Children are honest, and not afraid to ask the difficult questions. It does not offend me when a child does this. I would love nothing more than to educate a child, to explain to that child what he has and why he has the tubes. Usually they are quite intrigued!

There really isn't a bad question that I can think of. I'm not even offended if people ask me what Jax life expectancy is. Of course, no one knows for sure when their time is up, but it doesn't make me angry that people are curious about that.

I don't like when people tell me they are sorry. Sorry for what? This beautiful baby boy that I wouldn't change for the world? I also don't really like when people say, "how do you do it?"

Uh, do I have any other choice? I love taking care of Jax. This is what I did for 12 hours, 3 days a week, for five years up until he was born. Not only is it spending time with my son, its doing what I love! Not everyone loves it like I do. But we can't leave our child on the street. They were given to us, and it is our job to do everything for them to keep them healthy and happy.

Little Miss, what do I say about this crazy beauty?

I have had a few people talk to me about her having DS if they also have a child with DS, or work with kids with special needs.

Other than that, no one has ever said anything. Not a thing. I'm pretty sure it's obvious she sports the extra chromosome. From her itty bitty nose, to her beautiful almond eyes. My hope is that people do know, but it just doesn't matter! They see she is a funny toddler, and she usually has people laughing or wanting to tickle that little budha belly!

Of course I would also be happy to answer any questions about her. Like what age she did things, and what she may have trouble with.

It's interesting to have two totally different perspectives. Jax doesn't just have a Down syndrome diagnosis. He also has a cerebral palsy diagnosis.

This can be a touchy subject for some people. For me, it is what it is, and I'm just happy that I found the world of blogging. It has brought me so much closer to not only Down syndrome families, but families with children with other disabilities, which I needed with a child like Jax. In the year after Jax's brain injury, I had a really hard time going to our local Down syndrome parties. I felt sorry for my poor child that would have had a much different life, if not for someone's mistake. Online I've been able to find other families with children more like Jax, and know that he's not the only one!

*Jax has his cardiology appointment tomorrow, and I'm a nervous wreck! After 6 years with a cardiology team that I didn't feel knew what they were doing, I have this horrible worry that this new cardiologist will find a bunch of stuff that is wrong or wasn't fixed right! Think happy heart thoughts tomorrow!

All in a few words!

It only takes a few kind words to make anyone's day. This is true 3 fold for moms with medically fragile children.
It can be such a chore to take Jax anywhere. Feeding bag, oxygen, suction, and emergency kit. Along with a big, bulky wheelchair. It's never stopped us from doing things as a family.

We are used to the stares. The children's whispered questions to their parents. Sometimes even looks of disgust when we are suctioning him. These can all be emotionally draining to a parent.

Yesterday we were at Disneyland. I was walking off the Little Mermaid ride with Jaxson when a man put his hand on my arm. At first I freaked out a little. Actually, I was ready to backhand this man that I was sure was going to try and kidnap me in the middle of Disneyland!
Instead he looked at me and he said, "I think your doing a great job."

It took me a minute to register what he had said, because no one has ever said this to me before. He went on to say how hard it must be, and we talked about how Jax deserves to have fun with everyone else, how we sometimes have to fight to get him on rides, etc.
He said once again how great I was, and then, before walking away he said, "God bless you!"

This person doesn't know, or maybe he does, how much that affected me. A few kind words go a long way!
Remember that next time you are in a store and see someone with and obviously complicated child. Take the time to stop them and say a few kind words.
I guarantee it will go a long way!

The whirlwind continues!

Our whirlwind of doctors appointments continues!
You know we finally found a good pediatrician. As a matter of fact, we've been emailing back and forth because he wants me to stop by next time I'm there to get him set up with the medical home program.
Last week we had ortho. The good news is no surgery for now. He wants to wait until the last possible minute to do surgery because basically, Jaxson scares the hell out of him. The bad news is it will be needed, and he is wanting to see him every six months to carefully track the progression of not only his legs, but his spine. When he looked at him, he had red marks on his spine from pressure in his seat. Yesterday I say what looks like the beginning of a pressure sore. Yikes, that really freaks me out. I can't even begin to imagine how they would want to fix his spine! If it can even be done!

Yesterday was GI. I loved her too, but I knew I would because she was recommended by a friend. She asked me why I wanted to get him back on stomach instead of intestine feeding. My only real reason is because continuous feeds are not the most convenient thing to do! He'll never eat by mouth, so it really doesn't matter if he never uses his stomach and it shrinks. Again, she doesn't want to do surgery on him. I'm not sure why he scares people so much. With the trach, surgeries are a breeze! She wants to keep him on J feeds, and we are going to increase the hourly rate as much as we can so he can have more time off. Our only worry is J feeds isn't going to help aspirating on stomach acid, which is what he did in September. She switched him from zantac to prevacid, because its much stronger, and we wait until our pulmo appointment and get her opinion on fixing the nissen. I really do hate waiting, because with our luck he'll have a huge aspiration episode and end up in PICU!
I also asked her about what will happen when his GJ needs to be changed. I told her about our horrible experience in October at CHOC, where they put the wrong tube in and made a huge ordeal of sedating him. She wants him sedated and her to do the first change, because she's going to do some scopes and look at his esophagus and stomach. But after that interventional radiology should be able to do it.

Next week continues with cardiology and neurology. Fun stuff!
Everyone have a great weekend!

The boys snuck one of Arina's clips in Jax hair when he was sleeping!

My little stinker!

I love to leave Arina's hair down. Its so beautiful, but it hangs forward right in her face, unless you use some kind of clip.
Yesterday I tried just pulling one side up and using a clip. Instead of pulling it up with a band, and then a bow. Although I had to fix it multiple times, she looked so gorgeous and so grown up!

But the little stinker refused to let me take a picture! No smiles, nothing. I had to basically chase her around with the camera. Oh what a toddler! So although still gorgeous, not the greatest of faces from my little stink!



This last one screams "mom, leave me alone!"

5 times a charm!

Wow, after a fabulous weekend with the kids, sitting on a Sunday in a quiet house, everything seemed to crash down. I found out some of Arina's pictures were taken. Then the nasty comment from a person that assumes they know me, but gets the facts wrong!
I'm not going private, because I can't let these people win, and because there are too many good people that wouldn't be able to see why I started the blog in the first place! Awareness. Moms that are going through the same things will not feel alone! *By the way, if you ever want to email me privately, feel free to do so! Sometimes you just need another mother to talk to!

When I have more time to sit down tonight, I'm going to watermark my pictures. I'm not sure how to watermark past pictures though. I have like 3 years of blogging pictures that are not watermarked!
Nasty comments I try to quickly delete and move on. Its hard for me, because I can be quite confrontational when I feel I'm being attacked. But really, its pity I feel. If they are so educated and so smart, why are they going to blogs that they "claim" they don't like. Sounds like they have way too much time on their hands! But like I said, a lot of adoptive families, mostly through Reeces Rainbow, are determined to put a stop to it, which is why we put the tracker on our blogs. It literally shows us down to the persons street! I haven't heard from other families if it is working yet to deter people, we'll see!
After all, this sweet face is why we keep on blogging!! (this is one of my all time favorite pics of Jax!)

Today I had yet another appointment with a new ped. The morning did not start well. It was raining, and I forget that in Cali people do not drive when it rains, they creep. Then half way there my GPS died. I was going into Los Angeles, to a place I'd only been twice, and I had no GPS to tell me where to go!
So of course, we were about a half hour late to our appointment. Luckily, they let us stay.
He was amazing!
5th time is a charm right??
Right off the bat he gave me his email and pager number. He got us a referral to pulmonlogy, the only specialist we didn't have yet. He asked if there was anything we needed right now. He is going to get Jax set up on the medical home program, which will be a huge help as well. He is also the medical director, so I know he's the best.
Its amazing how at ease your heart is when you have someone good behind you. Now if we can make it to our neuro appointment without needing the ER first. Seizures are getting bad!

Let the freak out begin!

Ok, this blog is about 30 seconds away from being put on private until I can have someone help me watermark my pictures and make it so they can't be copied. Some creep has stolen pictures of little Down syndrome girls and put them on his site. Here is the original post. My friend emailed me and told me that she saw Arina on there. I've been there and seen other friends children, and I'm contacting them now. This is utterly disgusting!
Not only do we have creepy people leaving nasty messages on adoption blogs, now this.
By the way, nasty message leaver, I've been given a tracker that has been put on my blog so I can track the URL's of these comments. People are tired of getting them and are bound and determined to put a stop to it! They've already contacted the police and internet task force, who is the one that gave us the tracker!
So that comment you just left, has already been tracked! Thanks!

Friend, I do have photoshop!

chillin with the littles!

My house is super quiet right now. Daddy took the boys to a movie, and its just me and my Little's. Both got a nice warm bath, and a rubdown of baby lotion, so they are absolutely delicious! Quiet is weird to me, I like noise, and hustle and bustle. Although I admit I like being able to get on the computer and not be rushed.
Its been a fantastic weekend. There is so much to do in Cali, that every weekend we try to do something new. I'm the queen of being able to do fun things, and still save money. Last weekend we went to Universal Studios. I had a coupon for 15 dollars off each ticket, and if you buy a days pass, you get 2012 free! So we are now season pass holders to Universal for less than the price of a one day pass. Our local Costco sells movie passes for nearly 5 dollars off normal price. Killer deal since movies are me and the hubby's favorite date night activity. I also heard that the Queen Mary is now offering kids free passes. That may be on the docket for next weekend, Mondo is dying to go see it! In two weeks we are going to take a weekend trip down to San Diego. With Jax Make a Wish, we got a passport that gets us into some places for free. So we will go to Legoland and the San Diego zoo for absolutely nothing!
Friday we went to Disneyland. Of course that's not new for us, but always a treat. The best part of the day was not getting hassled at needing a wheelchair pass for seven people. Six is the max, and I'm always arguing over the fact that we have seven people in our immediate family! Trust me, I'd rather not need the wheelchair pass. I'd rather my son be able to run around play like his little sister.
Speaking of little sister, I let Arina out of her stroller to run around, and she attracted crowds of people. Its the funniest thing, she's like seeing a famous person. People were offering her popcorn, they were wanting her in their pictures, and just stopping to watch the adorable girl!


Tanner was shooting both guns. He wanted Jax to beat his big brothers!

More than likely we are going to commit to Ruth this week. After a nice weekend of thinking, its what we are supposed to do. This time it will be a little different. Ray will be traveling without me. We will be doing married adopting individually. Many people have done it, but it is something that can make the process harder. We need to make sure he takes lots of pictures of the family, and he wants to take some video of Arina, so they can see the amazing little person she has become. But you just never know what kind of judge you are going to get.
Now its time to start thinking of some great fundraising ideas!

The curler experiment!

Last night we did an experiment.
An experiment you don't usually try on a two year old, but remember, this is a momma that has been waiting nearly 13 years to have a girl!
Yesterday I bought her some pink/spongy curlers. Remember, the curlers your mom used to put in your hair the night before a dance performance? I didn't even know if they still existed.
They do!

Ready mom! Lets do this!

Uh, this thing is supposed to make me beautiful??

All done! Never underestimate the power of the ipad!


Wow, this feels wierd!


I thought maybe a shower cap would keep the curlers in their place, and ward off any grabbing!

Surprisingly, the cap was still in place in the morning! But my shower cap plan backfired! While everything stayed put, her hair was still wet!

We waited a couple more hours, and even used the blow dryer. But much of her hair was still wet when we took the curlers out!
Bummer!

I still call it a success! All curlers survived. Next time we'll find a hair net to keep them in place, and hopefully they'll dry!

When is the time ever right?

You may know that we are thinking of adding another princess to our house. We actually knew we would add one more princess not long after Arina was home. We talked and decided that after we moved, and had been in our home a year, we would start talking about it again.

Ahem, well we are not in our own home, yet the talk is here.
You can't help yourself, I mean, how can you?

This little girl screamed every time we bathed her for the first 3 months she was home. I felt like I was traumatizing my baby just trying to get her clean!

She had never had a bath, never in her life. She was quickly scrubbed down with a rag, because there were multiple children, and only a few people to bathe them. When I think about the life she would have had, I cringe. That is not something that leaves your mind!

I blame daddy.
Well, it sounds like a good excuse!
But he did fall in love first, and he dragged me right down with him.
With this little peanut, Ruth.
I wish I could make the picture big, but my computer refuses! Her Jaxson fohawk is what first sucked me in.
Funny thing is, daddy found her first, but she is exactly what I wanted. I wanted a child that needed a home a little more urgently because of medical problems. I want to use my experience, take children that other people are a little more afraid to take, because of my training and experience. She has a heart condition, and is said to have malnutrition. But every heart mom knows what malnutrition is in a heart kid, heart failure.
My first worry is a big one. Our last adoption we only raised about 4,000 of the 20,000 we spent on the adoption. We had taken a home equity loan to redo our yard and a few other things, and were able to use some of that money. Not long after our adoption, people started raising crazy amounts. I always joke that we adopted at the wrong time. I mean, people were raising 15,000+ on a single giveaway! Unfortunately, she went up on Reeces Rainbow after the Christmas Warriors started, so she missed out on that extra fundraising. Thats not going to stop us from the child we feel is ours. We just don't have the home equity loan to dive into if we don't raise the full amount. Scary thought!
For all you that may not know, most of us adoptive families have plenty to give to an additional child. But not too many people have 20,000+ sitting in a bank account to spend on the initial costs. I am not touching money I have in emergency accounts, as no one should. That is needed for just that, an emergency!
And of course we haven't bought our house yet. When I said we weren't adopting yet because we are still renting, many people asked why? Well, I guess I don't really have to, many people that adopt are renting. And while I feel like this house is too small for us, I do know of some adoptive families that have many more children in the same square feet we have now. So I guess I'm not really sure why that matters. The house will probably be bought and moved into before we are even able to travel, since this process takes months.

So we are giving ourselves a little time to talk, ponder, and pray, if this is the right time. We can't wait much longer though, because this muffin doesn't have the time to waste!
Just like this other little muffin, I'd like to get her to a loving home ASAP

Loves and kisses

Time for a Jaxson update.
The pediatrician search continues.
*sigh*
I was so excited to go to the one at Childrens Hospital Los Angeles, but when I got there, it was a dirty, overcrowded clinic. Yikes, I was immediately thinking this is not the clinic I want to be spending a lot of time at. Because its in the hospital, you see residents, and they report to an attending. The resident would be considered our pediatrician. I didn't like that at all. I know residents need to learn, and I'm ok with them coming in and doing their thing. But too many residents make decisions without consulting the attending, and I don't like that at all. We've had too many near tragedies because a resident said to do something, and the attending had not yet given the ok. Plus, the attending that did come in, I did not like at all.
I know I'm not going to get what I had in Utah, she set the bar way too high. But I do want someone that I can have a close relationship with.
Today I'm going to call UCLA's pediatric department. Its much cleaner, and not overcrowded. They also do medical home, which is what we had in Utah! I pray that UCLA will be the answer, we really need someone good!
We have tons of appointments coming up. We are going to be busy busy, trying to get this boy tuned up. Neuro is one I'm anxious to get to, and see if they agree that starting up the keto diet is a good idea. I want these seizures under control, before we get to a bad place again! GI I'm also anxious to see if they are going to fight me about fixing his nissen. I don't really want to feed him into his gut forever, and aspirating on stomach acid can happen again when it comes right up when he retches! The scariest one for me is ortho. That one is next week. His legs are terribly crooked, and I'm afraid that they are going to tell me his spine is just going to get worse. I just don't know what to expect from that appointment, except I do think a leg surgery will be in the future. A leg surgery also means casts on both legs for weeks. Not a fun thing at all! Cardio will be interesting. Because I hated my cardio in Utah so bad, in a way I fear that the cardio here will tell me a whole host of problems that were missed. That's just because I know he has a vsd, and I fear they are going to want to fix that. One thing at a time. Yesterday we did some bloodwork that endocrine wants, to check the function, or lack of, of his pituitary gland. Bloodwork is such a pain with this boy. I plan on fighting for a port for him. I just hope our new ped doesn't go against it. He has monthly labs, not to mention that he has no access if and when an emergency happens. In October, he blew through 3 IV's in 22 hours. It would have been more, but his horrible PICU nurse didn't check his IV all night, and it had infiltrated and proceeded to fill his entire arm with IV fluid! She's lucky it didn't cut off circulation to his arm!

For now, we just keep on keeping on with lots of loves and kisses. Because lets face it, that makes it all worthwhile!

On the move!

This princess is one busy girl! Now that she can walk, she wants nothing to do with her stroller.
She is go go go go!






Last night I went out and bought her a leash. That way she can be out of her stroller and still stay safe!

Jax mobile update

Remember our dilemma with Jax mobile being broken? The mobile he's had for 6 years!
A lot of you sent links for a new mobile, and I decided that it is indeed time for a new one. The old one will be packed with his stuff that I keep. And actually we may keep the music box for hospital stays, since that music still puts him right to sleep!
A friend and fellow Reece's Rainbow adoptive parent emailed me and said she wanted to be the one to get Jax a new mobile.
The mobile arrived last Thursday.

Its bright and fun. Now when my sweet boy looks up, he has some fun friends to look at. That's important when you can't play with toys, and your eyesight is limited. He needs some great visual stimulation.

We have one mesmerized little boy!

Number 2 it is!

It seems pretty unanimous that number 2 is the favorite! I agree. Number 1 is just plain beautiful, its always been a favorite of mine! But number 2 just shows her little, silly personality! 4 was my next choice!
Once I get it submitted, I'll let you know when the voting begins!
Thanks for your help!!

Pic a picture!

Ok friends, we have a crisis on our hands!
A cuteness crisis.
If you heard, some families that are adopting have come together and are having a photo contest to raise money for their adoptions. Pure brilliance, I think! I'm going to have to remember this one when we adopt again!
Anyway, we all know that I have the most beautiful, blue eyed princess around! Plus the winner gets a 150 gift card to Target! That would be fabulous since that is the only place that sells Jax liquid suppository's, and those babies are 6 bucks a pop!
I've picked out a few pictures, but can't decide which one to enter. I actually had to just stop looking, because I keep finding good ones, and then it just gets harder to pick! Pick your favorite. I'm going to number them 1-4! Ok, I threw a number 5 in there, because that is the original one that someone mentioned I should enter!

1.

2.

3.

4.


5.

Wowza!!

Yes, this is indeed me! The summer after high school and the end of drill team I had these taken because I was trying out for the Jazz girls. (Utah Jazz dancers) I ended up not trying out because my private studio, with all my friends started an older girl group, a group that I competed with when I was 7 months pregnant with Mondo.

Wowza, how I'd love to look like that again!

The Kate Gosselin complex!

A few months ago, when I was telling Ray that he didn't hook up the feeding pump right, he called me Kate Gosselin!
I was super offended at first, but then realized that in a way, he was right!

You remember that mom that we all hate. The one that treated her hubby like a child. She was horrible!
I actually used to love that show. As a matter of fact, I have the first couple seasons on DVD. Those kids are gorgeous, and the cute things they did was what captured my heart.
After my hubby teased me by calling me Kate, I started thinking. I understand why this women was so neurotic. She had 6 babies at once! If you don't stick to a strict schedule, or if something is out of place, it throws everything off.
I was never like that, that is, until I had Jaxson. He is so much work, and if something isn't done right, it indeed throws everything off. Over time with all his care, I realized that I was getting quite neurotic as well.
Don't get me wrong, I don't justify the awful things she has done, and I think the way she treated her hubby was just plain wrong. And I do think that her neurotic behavior is above and beyond even a normal person. I'm simply saying to a degree, I find myself like her.

On the other hand, I can be the most disorganized person around. Sounds weird with Jax I know, but its true. I have all of his meds in my brain. I just know what he gets, without having to write anything down. I know his cares and feeds, and exactly what time they need to be done.
My problem is with appointments and sending bills in. I'm terrible!
Since moving, and having life thrown into a bit of chaos, I have done the same with my organization.
Appointments, referrals, and doctors phone numbers are written down on random pieces of paper. Usually then, they get lost or thrown away!

Having a house with two levels has really thrown me for a loop! When I walked into the boys bathroom to an army of empty formula cans on the ledge, I realized I need to get my booty into gear!

I throw all of his cans into the recycling bin. But since Jax room is upstairs, I put the formula in, and then promptly throw the can in the bathroom, thinking I'll take it down when I go. Then there is sits until I have enough to build a pyramid!
I'm off to a good start, I'm in love with my new shelves I bought for his supplies. Although I need another one, I love how everything is so organized.

Next thing, and most important, I need to get me a good day planner!
I had one, but still managed to write things down on random papers and lose them. But with TONS of new doctors appointments in this next month, with all new doctors, I really need to get with the program.
I guess this in a way is my New Years resolution. I need to make sure that the day planner is always with me. I need to make sure if I write a number down on a scrap paper, I transfer it to the day planner as soon as I'm off the phone.
I need to get as neurotic with writing in the day planner as I am with Jax cares!
Wish me luck!