Wednesday, November 28, 2012

Here fishy fishy fishy!

I'm a pretty liberal mom. I like to allow my boys to make choices, to a point of course! I believe its ok to fall down. They need to learn how to pick themselves up and work harder. I was raised in a liberal home. My mom allowed me a lot of space in high school. But she always knew where I was, because I called her every time I went somewhere else. Because I was so good about informing my mom, she let me do a lot. Now that Mondo is in high school, I've told him the same thing. As long as he lets me know where he is and where he's  going, if he shows me he can be responsible, he will be allowed more space!
Just because Arina has Down syndrome, doesn't mean she's exempt from learning how to pick herself right back up!
In San Diego, we have a favorite hotel that we always stay at. One of the biggest reasons is it has a wading pool only 1 foot deep. Perfect for a princess that loves the water! When she first went into this pool, she stayed close to the edge. She didn't understand that the pool was that shallow all the way into the center! When she finally wandered in, she fell a couple times because walking in water isn't that easy! When she fell, I would give her a second to find her footing, or use her hands to push herself back up out of the water. She learned after just a couple times that she wasn't going to drowned, that all she had to do was stay calm, and push herself back up! She never swallows any water. She doesn't come up coughing and spouting for breath. She simply closes her mouth, and stands right back up! She is pretty much teaching herself how to swim! I'm going to look into swimming lessons for her next summer.

This last weekend, we were at the pool. I wasn't even in a swimming suit. I just sat on the side and watched Arina play. There was another lady there with two young girls around Arina's age. She was coddling them both on her lap. These girls cried if she put them in the water, they cried if she put them on a chair, and they cried if their toy fell out of their hands! They basically just cried the whole time! When she saw Arina get in the pool herself, and I wasn't physically in the pool with her, she looked concerned. She asked me, "Is she ok in here? My daughter can't swim in here, and they look like their about the same age." I told the lady she was fine. If I had to, I would just have to step into the pool and grab Arina, she was only a few feet away from me! A few minutes later, as Arina was splashing, she lost her footing and fell into the water. The lady about had a heart attack! That is, until she watched Arina push up with her hands, and stand right back up. She looked at me with amazement as I said to Arina, "good swimming sister!!"

Sunday, November 25, 2012

Back to the daily grind

We are back from San Diego, and what a great, relaxing trip it was! I was a little worried about Thanksgiving dinner, thinking we may have to find an open restaurant  Turns out our hotel was doing a Thanksgiving dinner! Best part, it was free! One of the many reasons this is our hotel of choice!

As much as I love staying in hotels, I really struggle sleeping in the same room as Jax. I'm a very light sleeper, and every time he makes a peep, I think he's awake, and it wakes me up! The second night was really bad. He was junky, and I actually noticed a very disturbing symptom! He was gulping and swallowing constantly, a big sign of refluxing. He also had a vomiting episode that same night. I'm starting to think that not only is his nissen not stopping the vomit, its also not stopping the reflux. And the fact that he's already on two reflux meds and still refluxing is also disturbing! Today I know he aspirated that night. The problem is he shows just enough symptoms that I know he aspirated, but not enough to warrant a trip to the hospital. He is super junky, high heartrate, low sats, and a low grade fever this morning. Since his GI didn't even respond to my last email that he aspirated, I was wanting to get a second GI opinion. But if he is refluxing enough to be gulping, I need to get him in quick! Since his aspirations so far are mild, I want his esophagus looked at, because if he is refluxing a lot, his esophagus is going to be red and angry! And even mild aspirations are bad on the lungs long term. Looks like for now I need to stick some more phone books under his mattress to elevate his head, and start really pushing for a sleep safe bed!

We were standing in front of this big beautiful Christmas tree, and I was thinking that since I never got around to our family picture OR Christmas card pictures, maybe I could snap one of the kids here and use that!
But the pictures are too bright, the settings were a bit off. Plus the kids just wouldn't cooperate! As I look at them, I can't help but notice whats happening!
Tanner just stands like a statue with his fake smile until we say stop! Arina is grabbing Carters face,

to give him a big smoochie! Jax has a great smile in this one though!

Notice Tanner still hasn't moved! I'm not even sure if he took a breath!

Me and my warrior!

Thursday, November 22, 2012

Happy Thanksgiving friends!
Since both of our families are out of state, we are going to San Diego for the weekend to play!
See you in a few days!!

Tuesday, November 20, 2012

Our warrior boy turns 7!

Today our warrior boy turns 7!
Wow 7, can you believe it?? Every time we go up a number, it gets stranger and stranger to tell people how old he is. The numbers keep going up but the little body just doesn't grow!
Current stats for this new 7 year old
25.10 lbs
36 inches long
pant size 2t
shirt size 3 or 4t
his tiny feet wear a 12 month shoe!
I believe last year his stats were exactly the same!

Many of Jax birthdays were spent in the hospital. The ones that weren't have never been a big party. Mostly because Jax doesn't know. He won't open presents, and he won't blow the candles out on a cake. We definitely celebrate this perfect little boy that has overcome so much. Every birthday I can't help but reminisce  I can't help but remember that 4 separate times before Jax 5th birthday we were told he would not survive. That's right, 4 times. This boy definitely has 9 lives!
I know some people won't take pictures of their children when they are really sick, and that's ok. I myself like to capture everything. I like to be able to look back and remember what we have been through. There is nothing wrong with remembering what happened. Its a time to put things in perspective!
The first time Jax was 4 months old. He had to be intubated for heart and respiratory failure. We were told then that it would be difficult to get him well enough to have his heart repaired, and he was in a very bad place. Man were they right!

   This picture was taken 4 days before Jax brain injury. After that brain injury we were told they could not fix his heart anymore, and that we needed to take him off life support! No parent should ever have to make that decision for their child!

When Jax was two he went into status, or constant seizures. despite all meds it just wouldn't stop. There was only one more med to try. Pentobarb, not to be confused with phenobarb. This med puts a person into a coma. Now some people say if there child is intubated and medicated they are in a coma. Typical drugs like versed and fentanyl that they use to sedate are NOT considered a coma. I have to set that straight to show just how truly devastating this drug is. It stops all brain activity, therefore stopping all body functions. He required medications to keep his body going while in this state. It was bad, so very bad. The ventilator was not able to adequately get air into those little lungs, and ECMO was discussed. We were told then that if the coma itself didn't kill him, that he would probably wake up still in status, and we'd have to take him home on hospice!

The summer before Jax 4th birthday was when he clotted off his SVC. Soon after his face and chest became extremely puffy, his oxygen need went through the roof, and his pulmonary hypertension was skyrocketing. He went to surgery to try and open up the SVC, which worked a little, but not enough to relieve the pressure. Because all of the other veins in his chest were also clotted, blood was having a really hard time getting back to his heart. This was when we made the gut wrenching decision to trach Jax. Most of the docs, including his ped, didn't think traching him was a good idea. They all wanted to just let him be. They wanted to let nature take its course, and once again hospice was discussed.

 I love to look at those pictures and then look at my pictures from the last two years. Despite some typical bumps, Jax has been the healthiest he has in a long time. He is the most amazing little person I know!

I think today I'll go buy a cake! I think we'll let him see the bright lights of the candles! We have a lot to celebrate!!
Happy Happy birthday Jax, you are the light of our lives!!

Sunday, November 18, 2012

Our life with autism

Its been a looong time since we had a chat about autism. Maybe because Tanner is doing so well. Maybe its because we don't focus on the diagnosis, just the kid. I'm not sure. But because its been so long, I'm going to give a little history.
Tanner was baby number two. Mondo was 3 years old, and Tanner was my beautiful blond, blue eyed baby  that I'd always wanted. He was a fabulous baby. He rarely ever cried, and he could entertain himself for hours on end! When Tanner was almost 3, we had concerns because he didn't have a single word. We checked his hearing, to make sure that was normal. When that test came back fine, we had a speech therapist start coming to the house to work with him. After a few months, she was the one who asked if we had ever looked into an autism diagnosis. I was shocked! I didn't know much about it at the time, this was nearly 9 years ago, before the big autism craze. But when she talked about the symptoms, and I googled it, I was even more shocked that it fit Tanner to a T!
Tanner NEVER played with other children. Ever. He would hug us, but anyone else was off limits. He used to play with a big bucket of hot wheels or Thomas trains. He used to hold a train upside down and spin the wheels right in front of his face. Over and over again. He used to take the cars out of the bucket one by one. drive it down the couch, park it, and go to the next car. When the were done, he'd start over. Hours and hours he would do this. It made me think back to when he was a baby. How he'd sit in his swing for hours, swinging so happily, never crying.
So at age 3 he was diagnosed with Autism by a physican specializing in the disorder.
In preschool, he went to an autism school, and it was so amazing. That school is what brought Tanner out of his shell. He started the year with no words, and by the end of the year we couldn't get him to shut up! They decided for elementary school he was ok at a normal school with resource classes mixed in. He did ok for a couple years. His 3rd grade year was an utter disaster! I truly think that Tanner can read his teacher. If he doesn't get someone great, he completely shuts down. If it wasn't for his resource teacher, we wouldn't have survived the year! She took him kicking and screaming every single day! As he got older his symptoms of autism changed. It turned into major anxiety. The weather totally freaked him out. If there was a cloud in the sky, he had a complete meltdown that it was going to rain. Wind and lightening and thunder was the worst for him. He would go down to his room in the basement and put a pillow over his head. That year was when we finally decided it would be in his best interest to start a med for anxiety. We also debated about trying to get him back in the autism school.
The anxiety med seemed to really help, and the next year we made sure he had a great teacher, and he did much better.
Tanner is extremely small for his age. Carter has outgrown him and outweighs him by about 15lbs. At 11 years old he weighs a measly 64lbs. Every single kid in his class is one to two feet taller than him. He is a skinny, scrawny kid!
I don't believe that you can "cure" autism. Tanner will always have his autistic tenancies. But I also think that there is no reason to believe that won't be able to function as an adult and have a normal life.

Last week we had Tanners IEP meeting after California did all their own testing. I was really shocked at the results. I'm still trying to wrap my head around it. As a 6th grader, Tanner is academically at a 3rd grade level! That is a lot lower than I expected him to be. The school wants to pull him out of his regular class more, so he'll get more individualized attention. They want him to be with kids his own age, so he'll basically be in his regular class just for the fun stuff. I believe had we done this testing before school started, they may have agreed with me to hold him back to 5th grade again! Luckily the special ed people at his school are fantastic! They adore Tanner, and want him to be the best that he can be. She said we need to start thinking about next year, as that will be junior high. I told them straight out that he is NOT going to junior high next year! He doesn't care at all is he stays in 6th grade again. Actually I know he would rather stay, so the classes are more at his level.
As hard as it is to think that Tanner is so far behind, he is really loved by all the students. He is very funny, and he is quite the little dancer!
Tanner still doesn't have friends that he hangs out with after school. He prefers to be home, and if we are gone too long he will start saying he wants to go home. He still has anxiety about certain things, but he's doing much better and he is no longer on medication for that. He gets upset very easily if teased by his brothers. He has a really hard time calming himself down, and we usually have to send him to his room with the door shut so he'll calm himself down. That's like his happy place!
 We will just continue to try and get his schooling to where its best for him to learn and grow. He is still my amazing blond hair, blue eyed boy!!

Friday, November 16, 2012

Q & A

Q. I was wondering if Jaxson will be going to school just for the social interaction experience, or will he actually be able to learn things too? Forgive my ignorance, but I have no clue as to his level or ability to learn things.
Not ignorance at all! In Utah, Jax was on home and hospital. The school came out to our house a measly 1 hour a month. Ya, you can learn a lot in that time ;) He had private OT and PT, and since that is really what Jax needs, I could have cared less about school. In this school, there aren't many papers and pencils, there are lots of different chairs, swings, and walking devices. Your right, he won't be learning his ABC's or anything like that. One big reason I want to at least try it, is because for Jax, its a change of scenery. Different people to interact with. It hurts to say this sometimes, but Jax is so good, that when I'm busy cleaning or what not during the day, he just hangs out on the floor. He doesn't cry, he doesn't need a lot of attention. He's very content playing with his tubes on his blankie. In school, he'll have people that will be doing tons of therapy with him. And its amazing what we find these severely delayed kids doing when they get to go to school! So for that reason, we have to at least try it! If he gets really sick, then we may have to back out. But we need to at least try!

Q.How much experience does the school have with trach children?
Honestly, they didn't give me any kind of history. But I didn't see a single child with a trach. They did tell me there were two children with trachs at the school right now. One is ready to be decannulated, so doesn't need much watching. The LVN at the school didn't make me feel much better because her knowledge of suction catheters left something to be desired!

Q.Thank you! Informative for sure... what about swimming though? Like submersion in water
When we were talking about traching Jax, and I was worried about how much it would change our lives, I specifically remember the RT telling us people even swim with trachs. We take Jax in the water, but he can't be submerged. You can submerge a trach if you put a cap over it. So the child has to be able to tolerate having a cap over their trach. Jax would never tolerate that, so he can't be submerged. But that's ok, because he'd aspirate the pool water anyway!

I'm working on an autism post. Its been far too long since I've talked about the autism in our family!

Wednesday, November 14, 2012

The great school fight, part 2

Yesterday we went to Jax school and met with the principal and RN.
I was prepared for a fight, since the teacher had already told me that trach kids don't need nurses. She also made it sound like if I wanted a nurse for Jax, that I would have to do home school.

The principal was very nice. The only bad thing is this is her first year. The previous principal had been there for 35 years! Kind of a bummer, just because you can tell she is new to special needs schooling.
First we went over his history, which took an hour by itself. When the RN started telling me how the school works, that's when I brought up that I wanted a nurse for him. Surprisingly, she agreed! She said she was leaning that way too. Such a huge sigh of relief, as that was our biggest worry.
The principal said that they didn't like nurses with kids just because they don't want the kids to get used to always having a nurse. I told her I wasn't quite sure what she meant by that. Medically, he needs a nurse with him at all times. If ever there was a time that he didn't medically need one, then we wouldn't use one! If she means that Jax would get used to a nurse, she is mistaken. Jax could care less who he's with! He knows who momma and daddy and his siblings are, but other than that,  all people are the same! Oh except Auntie Boo and his girlfriend Kayla, he definitely knows who they are! Point is, he's not going to cry if someone new comes around him. He cognitively can't comprehend that.

It will take a while to get him started. Because of his medical needs, there is a LOT of paperwork that doctors have to sign. The RN was going to gather it all together and give it to me to work on. Our other issue was the length of the school day. Its basically the same as normal school. 9-3, 5 days a week. I really worry that it will be way to long of a day for him. Heck, if he has a bad gagging episode, he'll sleep for an hour afterwards. So the plan is for now to send him in the afternoon, for about 3 hours, and see how he does.
After all the talking she gave me a tour of the school. Its not very big, and its an extremely old building. Its kind of a bummer that I toured the school in Utah before we left. Its a brand new school, with state of the art equipment inside. This school pales in comparison. Man if only I could win the lottery, I'd build a brand new building for the kids, with a great sensory room and a nice pool like the Utah school has! But seeing all the kids, none of them looked like they had the medical needs Jax does. Most of them eat by mouth, and I didn't see a single trach. Although they did tell me two kids in the school have trachs. It was mostly CP kids that had very high tone.
The point is, Jax will go to school, and he will get a nurse! I guess I can't title this post the great school fight anymore, because they have been more than helpful in getting Jax what he needs. I guess I'm so used to having to fight for what he needs, that its unusual to have it go smoothly! I can't wait to see how he does!!

Sunday, November 11, 2012

Live every day like its the last

Has it really been since Tuesday since my last post? Wow how time flies!

We've been in a bit of a funk around here the last few days.

Friday we found out that one of Carters coaches that he takes classes from at his baseball academy died suddenly. He was a young man, not yet married and had no children. We were in complete shock! We did not get any details, but from reading things on his Facebook page, it seems as if he may have taken his own life!
So so sad, so frustrating. Didn't he know there are hundreds of kids who adored him? He pushed Carter so very hard. Harder than any other coach. There were times that Carter despised him, because he worked him to the bone. There were days after catchers class that he would have red marks up and down his arms from blocking the ball. But man what an amazing catcher Carter is because of it!
Carter's last baseball game for fall ball was Saturday. He wanted to play in memory of coach K. So he wrote his name, along with an X for X Factor baseball on the side of his hat.

 I think Carter is still in a bit of shock. It won't sink in until he goes to his funeral if they have one, or goes to class and coach K is not there!
I spend a lot of time thinking about how my boys will be if we were to lose Jax. But there are some things you can never prepare for! Just a few months back we also lost a baseball player in his league from a brain tumor. Carter didn't know him, but he knew that another little boy his same age died. Life is short, which is why we try to remember to live every day to the fullest!

RIP coach K! We can only hope that you are now free from the pain you obviously had in this life.
I know you are watching Carter play ball with a big grin on your face from heaven, saying your favorite phrase, "Atta boy", after every great block!

Tuesday, November 6, 2012

Jaxsons first Buddy walk!

Sunday was a big day for Jax and I. We attended our first Buddy Walk ever! Yes, Jax is almost 7, and never been well enough for a Buddy Walk until this year. The one year we planned and had t shirts made, me and Jax spent it in the hospital, while daddy and brothers walked for us!
It was kind of a last minute thing. We weren't going to go because we hadn't planned anything. We had no team name, no shirts, nothing! But a friend backed out at the last minute with a sick kid, so we took her tickets. One reason we didn't plan on going was I was having a hard time with the cost. It would have cost my family almost 140.00 to go! I think that is ridiculous! I'm all for raising money, but charging the DS families seemed a little much to me.
The day was a little bit of a bummer, as things tend to be with Jax health. It was blasted hot, and we had to leave early because Jax was overheating big time. He didn't get to enjoy a thing, because he was listless and pale. We had to keep a close eye on his color and respirations, so we didn't push him too far. I stripped him of his shirt, and put water on his head, but we finally had to just get him out of the heat.

The highlight of the day was meeting a fellow orphan who was actually in the same orphanage as Arina! I can't even begin to tell you how surreal it is to see these two together. To know one was just upstairs from the other, but they never met. Now they meet, thousands of miles from their birthplace, with opportunities and freedoms they never would have had otherwise! It truly is an amazing feeling!
And every single picture we have of them is blurry! Neither girl would sit still. Arina is especially bad right now. She is going through this manic faze where she is just a holy terror! Hopefully it passes soon because she is making me nuts!

The team we latched on to at the last minute. Notice who's between Jax and Arina? The amazing Sophia, whose momma worked for nearly two years to get home from Russia!!

The walk was at Angels stadium, and my little baseball player was loving every minute of being on a big league field!!

Next year we plan on going all out, with a great team name and even better shirts! Now if we can just get Jax to cooperate with that plan!!

Saturday, November 3, 2012

Some people really do get it! Most do not!

Not many people talk to Jax, acknowledge that he's there, or try to engage him. If I do talk to someone about Jax, they talk over his head, never to him. Obviously we get a lot of stares. Sometimes we get such blatantly rude stares that I want to punch the people in the face! We also get a lot of snide comments when people see two young adults pull into a handicap spot. In all honesty we deal with a lot of crap. We would probably deal with less if we walked around buck naked!

I think sometimes people are afraid to talk to Jax. Their afraid to get too close, afraid they will offend us in some way, or they just don't know what to do. The only people that really talk to Jax are people that know him.
Here's the thing, if you talk to Jax, more than likely he's not going to smile back. He's not going to look at you, and he's definitely not going to talk to you. You have to get right in Jax face, his hearing and vision are poor. Trust me, he does smile, he even laughs, you just have to know how to do it!

Friday I was having a bad day. The boys were super sluggish getting ready for school. Mondo made Carter and Tanner miss their bus, so I had to drive them all. Then the Medicaid office called and said I filled out the paperwork wrong, even though I did it how they asked. I really need to know if he's going to get on the waiver, because it will determine how I choose our benefits for next year. We currently have a PPO, so it has high deductibles and out of pocket. That was extremely hard to pay for this past year. I need to know if the waiver is going to cover what his regular insurance doesn't, otherwise I'm going for the HMO with lower out of pockets. But enrollment is happening now, and I only have a couple weeks to re-enroll. Now I have to fill some paperwork out all over again before even seeing if he'll get on!
Needless to say I was a bit cranky when daddy, Jax and I pulled into a fast food restaurant. There was an older couple standing outside, staring us down as we pulled into the handicap spot and proceeded to get Jax out. When I'm already having a bad day it can be hard for me to keep my mouth shut, so we quickly walked past the couple and into the restaurant.
While we were eating our food a lady in the booth next to us got up to leave. I saw her looking at Jax, and thought, here we go again! But as she walked past us she stopped. She asked me if she could talk to Jax. I said of course she could. She bent over and proceeded to talk to him. Then she asked if she could touch him. I said yes, so she grabbed his hands and kept talking to him. At first he didn't even look her direction, but after she got closer and grabbed his hands, he gave her a smile!
Honestly, I think this is the first time EVER that someone has done that. For once it wasn't staring and gawking. It wasn't, "why does he have that?" It was just a person talking to a child, not the tubes or the disability. It was amazing, and it made my day.
Let me tell you, if you see an obviously severely disabled child, don't be afraid of them. Talk to them, its not only good for the child, but for the parents who usually only get negativity!!
Trust me, there is nothing negative about my little boy!! And I promise you, an encounter with him will change your life!

Thursday, November 1, 2012

Catchin up!

Trying to play catch up after the sickies infected our house. Arina is fever free, but her appetite is definitely still low and she still gets whiny and clingy. She still has a nasty cough, but that will probably linger for a while. I'm hoping Jax doesn't get it. Arina got it a week after Carter did, so although he's fine so far, we aren't out of the woods yet! Arina is only 4 days into hers!

Halloween was pretty uneventful. I'm glad we hit the Disneyland Halloween party, because our neighborhood was a total wash out! Past our house, not a single house was giving out candy! Arina was being such a booger, not leaving her costume on and running away, so daddy finally just brought her home! She liked being home a lot more, where candy was right at her fingertips!

Before throwing Arina into bed we attempted to get some half decent pictures of them in their cute costumes, before she had a total meltdown! As you can see, it wasn't very successful!

The day after halloween is another special day!
Today my beautiful Carter turned 10! Most kids get older before the parents are ready, but it feels like this kid has been 9 forever! I think its because at 9 he's had to work much harder to prove that he can play baseball with the majors. Although now it doesn't sound quite as cool saying your a 10 year old plays with 11 and 12 year olds like being 9 does! I'm so proud of him, he's accomplished a lot this year. Tournament of Champions and All Stars, and in November he has a big 3 day tournament and a baseball camp the week of Thanksgiving. We are excited for the camp because its coached by one of the high schools, so this is a great way to get Carters name and face out there. He's pretty unforgettable because not only is he playing up at a young age, he's already a small 10 year old so he looks tiny tearing it up out there! I can't wait to see where baseball takes him!

Carter, thank you for being such a good kid. My future student body president. Friendly to all the kids in school, and adored by all the teachers. The first thing I always hear at parent teacher conference is how much your teachers love you and how great of a kid you are. I couldn't have asked for a better son!

Happy Happy birthday Carter, love mommy!!