Friends, things are not going well with my mom. She has bacterial meningitis. She is intubated and sedated. Because they are sedating her its hard to see her mental status. If they turn the sedation off, she gets agitated, but tonight she wasn't even responding to pain. So her nurse is turning down the propofol to try and find a happy medium. A CT today showed infection in her sinuses. She is on such heavy duty antibiotics that pregnant women cannot take care of her. I don't know that much about meningitis, but I know this is a severe case, and the situation is critical. I'm not in Utah yet, I had to get oxygen taken care of with Jax today, and we leave first thing in the morning. I'm holding on to the facts that my knowledge has taught me. If she can beat this infection, we can work on the neuro stuff in rehab. She may not be back to normal, but thats ok. Her other organs are not showing signs of failure. So that is a good sign that her body isn't shutting down.
But I'm scared. Actually I'm scared shitless!
My mom is only 55, she's still a baby! She's never had any medical problems, except for a recent hysterectomy, and she's a new diabetic. Now she's fighting for her life, and the doctors are being very cautious about her outcome.
To try and leave this post on a good note, and because I can use the laughs. Heres a couple videos of my super silly princess.
The first is the discovery of seeing herself on camera. The second is her Gangham style dance moves!

All about Jax

I climbed into bed around 10:30. Not too shabby! I was able to get through Jax night routine pretty quickly! Meds, treatments,  feeds, respiratory junk. Jax was quickly asleep a little after 10, his normal time. Arina had long been asleep, her bedtime being 8 o'clock.
As I'm laying in bed, listening to the hum of the concentrator, and the steady swoosh of breaths the ventilator pushes into his lungs, I hear another sound. This sound is like a burping. I fly out of my bed and into Jax room, because I know what that sound is. The sound of retching and vomiting. When Jax vomits on his ventilator, he has a much higher risk of aspirating, as the ventilator pushes it right down into his lungs. I suction his trach and his mouth, trying to get all the bile out so he doesn't aspirate. He falls right back to sleep, his heartrate much higher, his face more pale, he is exhausted from that episode. As I climb back into bed, my radar still out for the sounds of more vomiting, I start thinking of all the little things Jax goes through on a daily basis, that we don't even think about anymore.
When Jax vomits, he can't take a drink of water and rinse his mouth out. Sometimes I will squirt a little water from a syringe in there. But he has such a high aspiration risk, that I need to be super careful about that. I try the sponges, and I brush his teeth. But both of those are hard as well because he HATES having anything in his mouth, and he fights it like crazy! Can you imagine vomiting, or refluxing up and not being able to rinse your mouth out? Yuck!
Jax doesn't get feeds into his stomach, because of his reflux. His feeds go straight into his bowel. That means that Jax stomach is never full, he is always feeling hunger. He has never been one that fusses when hungry. But I can't imagine always having an empty stomach. Always feeling like you need to eat something.
Such small, seemingly stupid things. But things he goes through on daily basis besides the normal, big stuff.
He is such an amazing little person! How was I so lucky to be chosen to take care of this warrior boy?

I am starting a Facebook page for Jax. I was reminded by a friend that its about time, especially with a little sister who is feisty, and can take the spotlight from her big brother. This all started with Jax, and the Facebook page will be all Jax, all the time. Pictures, medical updates, you name it. It will be much easier to update there quickly if we need to. The blog will stay of course, the page will just be a faster way to get a Jax fix!
http://www.facebook.com/Jaxsonsfight. Here is the link to his new page. Go "like" it so you can get on the go Jax!

We will probably be making a trip up to Utah either tomorrow or Tuesday. Its been a rough weekend, and I'm ready to let 2012 bite the dust! My mom is currently in shock trauma, and they have no idea whats wrong. She is unresponsive besides opening her eyes, but her head CT was normal. Its making me crazy that I can't talk to the doctor myself and get the medical info that my dad can't understand! Please pray that she is ok, and its nothing life threatening, I'm so worried! Also Ray's best friend and the best man at my wedding took his own life last Sunday. Ray will probably be flying up to Washington Friday for his funeral, and I will be traveling alone with the kids to Utah. Prayers are definitely appreciated this week!! Thank you friends for everything you do for us!!

I hope everyone had a great Christmas! Ours was good. As good as it can be being the second year away from family. Rays work has said that no one can take vacation time at Christmas. To which we say, uh, ya we will! With both of our families out of state, there are going to be Christmas's that we go away! Whether they like it or not. Hopfully next Christmas he will no longer even be with this company. Fingers crossed!

Since we don't have any family close, we took the kids to a movie. We went and saw Monsters Inc, one of my favorite Disney movies, re-released in theaters! Arina has never seen it, and she didn't move the entire movie! As crazy as this girl is, if you put a favorite movie on for her, its a sure way to keep her in one place!! This is definitely a movie we will add to our Disney collection!

We didn't get a whole lot of pictures Christmas morning. As soon as the opening began, the camera got set down and forgotten!
What is that I see?

Wow, a kitchen like mommy's!

Mickey guards the presents under the tree!

Coffee anyone?

Mondo spent the day putting together multiple, complicated lego sets!

Cinderella and her dolly!

The great Santa picture!

Since we've been a little behind getting ready for Christmas, we didn't get our Santa pic until yesterday! I'm glad we got it, because I think Jax is coming down with something. He is oozing junk, and although he does great on his vent, off his sats are mediocre and he coughs and coughs. Usually that means his airway is collapsing, making him cough. He tends to have a super long "dormant" period before he gets really sick, so I'm hoping we can make it through Christmas!

Pictures are not fun anymore with Arina. That girl doesn't sit still for 5 seconds, and I usually get frustrated and just say forget it! Jax is also not fun, although he is so photogenic, he doesn't look at the camera, his hands are always in his face, and he can't hold his head up. Its a complete disaster trying to take his picture.
So of course I was a little concerned about getting a good Santa picture. But thanks to our amazing photographer dad, that can snap in super speed, the very first picture is actually great! Then it all goes downhill from there!

Lift me up big guy!

Ta da! A decent picture! Although Jax eyes are about closed, this is as good as it gets!

Then Arina tries to climb down, I lift her back up

Jax hands are in his face

Then he loses his head control completely, and Arina spots the train and is signing "train"

There is about 30 more pics like these last three. This all happened in literally about 30 seconds! Super speed I tell you!
Merry Christmas to all of our friends, Love Jax and Arina!!

Ignorance

Yesterday I took Jax to meet a new ped, whom I loved and I think she'll be what we have been looking for!
Anyway, getting in the elevator came a mom and her son, ten or eleven years old. He wouldn't get in the elevator. He didn't want to get in with Jax. He said he was "gross." The mom coaxed him in, shushing him and whispering, that's not nice. She even tried changing the subject to homework. Never did she make him apologize to me for what her son said.

This could have been a teaching moment. I know that, after all I teach all day, every day! I'm constantly teaching people of all ages about Jax, and that he's just a little boy!
But yesterday, I wasn't a teacher. I was a mom. A mom so upset by the constant stares and nasty remarks from people. I just broke, I couldn't do it that day. All I could do that day was be the better person and just keep my mouth shut! Because believe me, I had a few choice words for not only the kid, (who was definitely old enough to know better!) but his mother, who obviously hasn't taught her son any kind of manners!
I missed it, I missed a teaching moment. But I am only human, and I can only take so much!

So as I put my angel to bed last night, I just kissed those beautiful cheeks and apologized to him for this world we live in. And thanked God that he doesn't understand any of it. I take that burden from him, because I can handle it.
Most of the time.

Tis the season for giving!

This post is about the two most unpopular topics it seems by blog clicks and comments. The blankie project and Jax medical updates! If you ever have any questions or need me to be more laymen with Jax medical updates, don't hesitate to ask!
First Jax. His retching and vomiting is slowly getting worse. I think his nissen is slowly opening up more and more, and he's refluxing like crazy! We went to a new GI on Friday, and she was AMAZING! I'm so glad! She didn't talk down to me, and she listened to everything I had to say. The one thing that bothered me, but that every doctor does, is being so afraid to do anything to Jax! This doc is even afraid to scope him again, even after I told her he'd be fine! So for right now she wants to check the PH in his stomach acid and his oral secretions. Athough I'm not sure that will tell us much. Next step after that would be the scope, to check his esophagus for redness and wear from acid. Then after that would be the decision to try fixing the nissen one more time. I think if they do it open, they may be able to handle it better, both times he had it done laparoscopically  Even she was surprised they didn't do it open the second time!
Next his labs were all out of wack last time we visited the keto diet clinic. His chloride is low, which has her worried about his kidney function. She wanted him to see a nephrologist, to which I said not right now. I think I know what will fix the chloride. I don't know if its because I don't want to add one more specialist to the group, or because if we see nephrology, we'll have seen the doc for every body function. Yikes!
I just got back from the lab with Jax for follow up numbers, and it was a no go. Three pokes, no blood, and no veins. I think I'm actually going through mourning now that I've realized that I will never find a doc like Jax Utah ped! I'm so frustrated because right now I feel like I'm truly alone, that I'm managing his healthcare myself, and that is a daunting task! I email his current ped with a question, like what can I do for pressure sores on the back of his head. He sends me a few pics of some pillow. No more to offer than that. Well thanks for nothing!! I have one more Ped I'm interviewing on Thursday, and if she doesn't work, I'm literally going to go down the list of peds in my area and interview every. single. one. There has got to be a good one somewhere!!

I'm keeping my fingers busy right now with blankie requests. But I must admit, its becoming daunting because I'm doing it alone, and get very little donations. Postage is getting really expensive, and right now it costs between 5 and 6 dollars to ship a single blankie.
Its so rewarding sending the blankies to these kids. To see the pictures of their smiling faces, and get the notes from their parents!
"Her blanket arrived the day her new forever family flew in to meet her! We all opened the package together, but first they had to take pictures of her name in the address field: WARRIOR CLARA. We all love that, but it brought tears to my eyes. I'm the one who has seen her in warrior mode for three months. Thank you for that awesome acknowledgement of her fierce struggle. And thank you also for the darling GIRAFFE blanket! What a beautiful addition to her giraffe collection. She is using the blanket and it has already been through the washer! May God bless you for your generosity and kindness for my baby."

JoAnns fabric is having a sell on flannel right now. 60% off until Christmas Eve. That is a killer deal! If you would like to donate fabric, email me at laceyrugg@hotmail.com and I'll let you know what we need. And please share our facebook page so we can spread the word and get more "likes"!!

First preschool program

Thursday Arina had her preschool Christmas program. She has been in preschool since September. While its been fantastic, and she's learning new signs everyday, I was hoping I'd see more listening skills! She's going through this crazy girl faze, and its making this momma nuts!
This class is great because they sign everything as they talk. So it helps non verbal kids like our princess. She's learning signs that we don't even know. Our family needs to start studying our signs more!
The teacher sitting behind Arina is there because Arina is a runner. She always has to have her hand held when walking outside the classroom. And the teacher sits here to keep Arina sitting down. I didn't get video of Arina laying on the floor in front of her chair like she did a couple times!
Every time I have a first with Arina, I always think about the life she would have if she was still in Ukraine.
Enjoy, these videos, they are super duper cute!
Oh, and look how tiny Arina is when they all stand up!

Ok, blogger is making me crazy! The HTML is not coming up, so I can't delete the bottom video, and it keeps posting the same one. So watch the top one, when its over the next one will automatically start. There are two, and just ignore the bottom one altogether! Sheesh!!

makeover time

I feel like this blog has hit a dead end so to speak.

I'm not planning on stopping the blog, so don't worry about that! I just feel like maybe it needs some sort of makeover. I notice a lot of blogs have a lot more technology on their pages, like ways to follow. Although I have no idea how to do that, I feel like maybe that's where we are headed.
Maybe a new look and some "up to date" stuff will make us pick up some more speed. I feel like we've slowed to a creepy crawl.
If you have any advice on what we should put up, please let me know!
I've also been busy working with Jax and trying to find a good ped, and a second GI opinion. Today I hit google and I'm seriously just going to go down the list of peds and go meet them all until I find the one that I like! A new GI can fit Jax in on Friday if I can get his records sent over, which might be the problem. Getting  records is a big, long process. Keep your fingers crossed that I can get them over so we can hopefully get working on this vomitting, aspirating problem quick!

Daddys Ukrainian princess

Ray confessed something to me the other day.
He said when he first saw Arina's picture, he didn't think she was cute, and he was worried he wouldn't like her.

He said when they first walked in to the directors office in the orphanage with her, it was instant love! He said it felt the same way it did when each of the boys was born. I felt the same way! Holding her for the first time, was just like when they handed me each of my boys. She was meant to be our daughter.

Because Ray went back to Ukraine alone to get Arina, he feels a special bond to her. Every night when Arina hears daddy's car "honk" her face lights up and she runs for the front door.
Her only word is "Pa Pa", and her first sign was daddy. I think its pretty obvious that she feels the same bond!

In case you haven't noticed, I've been at a loss of words so to speak lately! Is it the time of year? Maybe, although I'm not finding myself hustling and bustling about.
Maybe its because the blog world seems a bit slow, maybe I'm in a funk, not sure.

Maybe, its because one of our DS friends is very sick. Even though I've seen many sick DS kids, and kids that have passed away lately, its been a long time since someone I feel close to is this sick. My dear friend Janet's daughter Aziza is fighting for her life today. I talk to this women on a near daily basis. Mostly about medical stuff, but that's usually how we meet these dear friends in the first place, right? She had what they think is a bowel obstruction, but its turned into a raging infection and she's septic with multi organ failure. Her belly has been left open and her intestines are swelling tremendously. I'm literally sick to my stomach! Its like I'm right back in the PICU again, only this time I can only console through a computer screen, and that really sucks!
Man I remember days of multi organ failure, plummeting BP's, and just plain scary circumstances. I remember feeling so alone, but I didn't have Facebook to read the comments from friends knowing they were praying. I feel like all I can say over and over is it SUCKS!! Please please pray for sweet Aziza! She needs them desperately right now!

Maybe its because I'm enjoying immensely my alone time with Jax during the day. Its been two years since I just had Jax in the house. He won't start school for a while because his medical paperwork and IEP are intricate and will take time. I love to just hold him and stare at his beautiful face. I love to make him smile and giggle. I love that he is reaching out with his hands more. He doesn't purposefully reach for things, he just stretches those arms out. Many times he touches my face. He has grabbed my glasses, ears, and even scratched my cheek! I never thought I would say that I loved that my son scratched my face! He doesn't understand what he's doing. When something touches his fingers he will clamp them closed for a split second. I love it! I love savoring these small things we so take for granted in our children. I love to watch him sleep! He always rolls almost to his belly when he sleeps, his cute little butt in the air! I never understand how that's comfy, smashing your trach into the carpet and making your bottom arm purple from laying on it. But he's just so sweet, and so perfect, I have to capture those moments in my brain forever!!

*Update* Sweet Aziza has passed away. My stomach is so sick that I'm feeling nauseous! It makes the above post so much more important, these pictures so much sweeter! This very reason is why Jax goes with us everywhere, why I barely let him out of my sight! I have to treasure every. single. second!!

Dare Devil!

Man I wish I could take this girl on the Tower of Terror, she would LOVE it! But since she's already little for a 3 year old, I'm guessing it will be a few more years before she can try it!

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!!"

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!

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!!

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!!

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!!

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!

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!!

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!

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!!