Home!

We've been home from Utah since Friday. We never did figure out the source of Jax fevers. I'm beginning to wonder if it was just severe intolerance to heat. It would be strange, because he's always had a heat intolerance, but as long as we take frequent breaks he's ok. This time any second we stepped outside he struggled! His saturations also returned to normal once home. So maybe he is not tolerating the altitude after being gone from there so long. In January he didn't have this severe of a drop, but you just never know what to expect from our Jax!

He's currently fighting some stomach bug. At least I hope that's all it is! He's very pale, distended tummy, and pooping a lot. Which is very strange for him because he doesn't poop on his own, ever! We'll just keep a close eye on him! 

Our princess gave us our first heart attack yesterday! The only good thing was it happened at her second home, Disneyland! After the parade she was sitting on Carter's lap in the stroller. Carter let her off his lap, and didn't hold onto her. She was gone! All toddlers can disappear fast. Arina is three times faster than any toddler! I can be holding her hand and she'll be 20 feet away as soon as I let go and before I can grab her again. As soon as we realized she was gone, ray took off to find her. I had carter grab a cast member, and within that minute the entire park was on lock down. If Arina takes off, Disneyland is the best place for her to get lost. She was back in our arms within about 5 minutes. I've heard so many stories of other friends with DS getting lost, as they are known to be runners, and Arina is definitely no different! We will now be taking a leash along with the stroller, and the boys need another lesson that they can NOT let go of her unless she's buckled in her stroller or mommy and daddy have her! We're just grateful it was within the safe walls of Disneyland, and not a neighborhood with busy streets and lots of hazards! Although I think I aged ten years in that five minutes!

Jax is the boss.

We've been in Utah for a week now. Jax has had control of everything we do from the second we arrived here! As soon as we got in the hotel I noticed his saturations were lower. 

Ok, no biggy, we are at a higher altitude. Although in the past he hasn't needed and oxygen increase when here. This time he definitely did! But I also noticed his heartrate was quite high. I checked his temp and low and behold...a fever. I was concerned as only two days before he had his port placed. I called the surgeon, and he said get to the ER, as it could be a line infection. 

The only downside to a port, is the worry of a line infection with every fever! But I wouldn't trade it for the world! Two seconds is all it takes to access, get blood, and run a dose of antibiotics! They wanted to admit him, but I held my ground saying no. We are close to the hospital, and I know him better than anyone! Boy I'm glad I did, because the fever did not come back the next day, and his cultures were negative!

But the very next day after getting the negative, yet another fever. At times over the last week I've had I turn his oxygen up to 4 times his baseline. 

I had called our old ped, not because Jax was sick, but to see if we could get together while we were here. She had seen he was in the ER. I guess his info still goes to her. I told her what was going on, and she said she would see him! Nothing better! I was so excited! She said, I may not be in the loop on him. I told her, don't worry, you'll always be the one that knows him best! It was so nice to be in our old groove with our partner. It really made me have to remember why we moved, and that the move really was the best thing for him and us. But I will always miss her more than anything!

She tested Jax for everything under the sun. His chest x ray is yucky, but not really worse than his baseline, making her pretty confident it's not respiratory. Everything else so far has also come back negative. He continues to have low sats and fevers. Crazy boy!

We have decided that we are going to keep dual pediatricians! Sounds crazy, and I've never heard anyone doing it. But we will be frequent visitors here in Utah. And Jax medical problems don't take vacations. We are going to send a monthly update to our fabulous ped here, so she's always up to date. And Jax will still be listed as her patient and see her when we are here! I'm so grateful for such a wonderful, caring doctor and friend!

Daddy flies home today, and me and the kids will stay until Thursday, when we will drive home!

All done

Munchkin is done, and for once everything went smooth with no problems! I can't believe it knowing that Jax veins were a mess! 

A miracle happened, his right subclavian was actually open! It had clotted off and had major scar tissue, so I don't know how it was open enough for a port, but it was, so his port is on his chest in a normal spot!

Our wonderful surgeon said that they had four people, one at each extremity, trying for an IV, and none were able to get one, so he is so glad that we got this port placed! 

It's a huge security blanket for me! Now I know if he's sick and we go to an ER, we have an automatic line. Whew, that's a great feeling!

We are heading home now and I still have plenty of time to get last minute stuff done so we can leave bright and early tomorrow morning!

Surgery

Jax is having his port placed as we speak. I over slept this morning, (bad day to do that!) so I'm dirty and scatter brained right now! I caved and had my first cup of coffee in 6 months! 

He's been in surgery for two hours. The nurse just came out to get a signature because they are going to clean up around his J tube while he's under. I'm so glad as its been an infected yucky mess since he had it placed! 

I didn't get any other info from her except that the port is in. So hopefully soon he'll go to post op and I can find out how the placement went, and where the port is. Hopefully it's not in some obscure place. It's such a relief to finally have it though, and it's a big security blanket for me!

I'll update when he's out of surgery!

A Utah trip!!

Even though we technically only got a week of summer vacation (booo) we are still having tons of fun! Carter went back to school today, and he is our only one still on track schedules! It stinks big time!!

Besides our near weekly trip to Disneyland, we've been playing with lots of friends. And of course it's All stars time, so we've been doing a TON of baseball!

Today we have an appointment with the surgeon for a pre op, and Friday Jax is having his port placed. Hopefully our labs today will be the last set of labs requiring a poke! After his port no more pokes digging for blood! It will be such a relief to have, and it should be an outpatient procedure. That is if little man behaves himself!

Monday of next week we are heading to Utah! We were supposed to go to the conference in Denver first, but when daddy didn't get the time off we cancelled our hotel room. Then daddy got a couple days, but not the whole time and we decided it wasn't worth driving all the way there for two days. So we'll just go straight to Utah! I'm so excited to go home! If any Utah friends want to get together email me and we'll set up a time and place!

Neglect!

Once again I've neglected the blog! 

And when I was just thinking of a new post, I just saw that a beautiful adopted princess has earned her angel wings. 

Adoption itself is not for the faint of heart. It can be a long, grueling, heartbreaking process! But to adopt a child that has medical problems, is even more fulfilling! Knowing that the sweet child now not only has good medical care, but a family to hold their hand and give them the world, is simply amazing! We were lucky that Arina was as healthy as she is! We were told she had a heart defect, but when we got her home it had repaired itself. There is a very real chance that she could have had a defect that was severe, or had gone unrepaired for so long that the repair is now high risk! 

My heart breaks and is joyous at the same time! Her story is so similar to the story of beautiful Chrissie! Remember that? My heart breaks for the loss of the child, and that the family now has to deal with their child being gone. But my heart is joyful to see everything these princesses got to experience with their forever families! Someone was their to hold their little hands as they took their last breath! They weren't alone in an orphanage or institution!

Sweet Teresa, the tiara that you now wear is the biggest and most beautiful of all!

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Inclusion

I apologize in advance for a couple things. First my computer is on the fritz, so I'm posting from my phone! Second I apologize if this post is all over the place! I feel like I'm being pulled in a bunch of different directions when it comes to inclusion, and that may also come out in this post! 

Inclusion can be a heated topic. This post is not meant to be like that, just my feelings as a mom that has two children on complete opposite ends of the disability spectrum!

I look at my beautiful girl, and I don't even feel like I can call her disabled! No she doesn't talk, but she signs and she communicates. Besides that she has no disability that I feel is all that different from many children! I remember a friend did a post on inclusion and a mom had the nerve to say that she doesn't want her perfect children to have time taken away from them if a child with special needs is in their class! All I can say is this mom is not even paying attention to her own child's school! Chances are if you went into your child's class, there is at least one, probably more children that get pulled out of class and goes to resource for special help! Some children struggle with math, some with spelling, it doesn't mean that your child is getting any less attention than they should be getting!

We all struggle in one or more areas of life, so are we all disabled in some way? Right now Arina is in preschool, when she starts school I want her to go into a classroom with "typical" peers. I don't feel like there's any reason she should be separated! If down the road she isn't learning the way she should, than I would definitely consider putting her in a special day class, a class where she spends the entire day with a special Ed teacher. As a matter of fact, Tanner was pulled out of his class a few months ago and put in a special day class. His learning had slipped quite a bit, and he was getting farther and farther behind his peers. He is thriving in the special day class, and I know that's the best place for him right now! 

Now Jax, oh sweet Jax! His schooling has been a nightmare! Obviously he was referred to the special needs school, where severely delayed children go. I wasn't impressed with the school itself. I know it's a budget issue, but that doesn't make it right. It's very dark and old and outdated. Nothing at the school screams "this would greatly benefit Jax!" And even though Jax would have a home nurse go with him to school, I wasn't impressed with the staff nurses abilities. They didn't know how to suction a trach or even what the suction catheters were called. I just didn't feel it was worth Jax health to go to a school that didn't have great therapy equipment like he needs. We decided to do home/hospital until I figured out what I wanted for him. Up until this time we STILL had yet to get him an IEP done! So a teacher comes out to meet him, and then never comes back. I hear nothing until I call, and I'm finally told the teacher couldn't do it anymore! I actually called and talked to Tanners teacher, a special ed teacher. She said their school does mild/moderate, like tanner, and severe. She was a tad worried about Jax medical needs, although I reassured her that he would have his own personal nurse with him the entire time. But without an IEP the boys school can't decide if Jax would be ok there. The boys would love if Jax could go to their school, and I think it would benefit the other kids as well, interacting with a child like Jax. Of course  if he went to the boys school it would be harder to keep little hands off him! Again it puts me in a great dilemma about what's best for Jax! I'm all about including him in whatever we can. So I feel like we should at least give it a try! I'm going to call tomorrow and demand a new case worker and an IEP to be scheduled for him immediately! 

So you can see why this is so wishy washy with me! This whole inclusion and school thing can be such a battle! I'm just glad that Arina and Tanners process has been smooth and direct, and we'll work on getting Jax there too, wherever his placement ends up! And it may change a few times until we find the right fit!