Whew, its been a crazy last couple of days. With my sisters coming into town, and some of you may know that the 24th of July is a big Utah holiday. For me its an excuse to have a parade and a party. Any excuse for a party.
We had a parade this morning, and of course we overslept. Luckily we had family that had slept down there and saved us spots. We got there just as it was starting.
Later we went to my aunts for a party. At first Jax wasn't liking the water much, which is strange for him because he normally loves it. But he's been cranky lately, its one of the things I'm watching. Along with sleeping a lot, and the turning blue when he cries. I took him out of the pool and put his O's on. When he cries he obstructs, but lately its been really bad and he gets soo blue. I don't know if its obstruction or his heart.
I put him back in a little later and he was very happy. I think he likes the water because his body is free. He just floats. He can't move much normally because of severe hypotonia, so in the water his body can move, its like therapy.
Got my goggles on, lets go underwater.
My maniac child. He figured out how to do front flips in the water.
A lot of you asked if you can buy the calendar. It usually comes out in November. Its 2010's calendar. I will be buying a lot for Christmas presents this year. So I'll let you know when its out and you can get one.
20 comments:
I'm glad he enjoyed the pool. I am very envious - we are mid-winter at present.
I am so glad he enjoyed the pool! He looks very peaceful in that pic! What a cutie!
Other than that first pic, he totally looks at peace in the water. So sweet. Does he actually like to go under water? Ella has not gotten to that point yet. She doesn't like water in her face at all. In answer to your question, the chromosome test can show if there are changes in the chromosomes which I guess tell them if cancer is looming....I don't really understand it completely. So what is the July 24th holiday in Utah???
I am so glad he was able to enjoy the pool the second time around! He looked like he was loving it! Justin is slowly warming up to swimming. Don't we love extra holidays! Anything for another day off and being together with our families!
We took Max swimming for the first time today - he hated it :) Jax looks like he'd float there all day!
There was something about Ray holding him in the pool that made me cry.I know.Weird but there was just something.Remind Ray his arm says LA ... we're expecting him back.Tell Jax to knock off the blue spells .. giving me a an attack myself.Love to you all.Boston called???
He looks so content in the water with daddy. very sweet how your hubby has your name tattooed on his chest. too sweet.the magnets should be here in a day or 2
oh that little boy of yours is doing a number on my heart! Just kiss his cheek for me.
What a sweet, sweet boy!!! He looks so peaceful in the water! I'm jealous about that...you know how well Gavin tolerates water! I love the picture of him with the goggles on! So CUTE!!!
Praying that he stops having the blue spells! How scary! Poor little man, but what a fighter! HUGS!!!
I'm glad Jax enjoyed some water time...water is so relaxing & theurapuetic...he is so cute in those blue goggles...and I am with Heather, so sweet the way Daddy is looking at him in the water...I get all mushy with Daddy and son/daughter pics anyway...great to have family in town too, I'm sure...
What an awesome, weightless experience to float in the water. Beautiful boy and great photos. The goggles are too cute!
Awww he looks so calm and relaxed! Kameron has those SAME swimming trunks! :)
I love his little tropical swimming trunks. He is so cute! I'm going to keep praying for Jax for some good news. BTW, have you heard anything from Boston? I don't think I have seen anything on it. I sure hope someone will take his case.
Hope your having a great weekend.
Hugs from Carson and I!
Loving the googles! That is just so adorable. He's just chillin' in the water.
great pictures. Jonathon loves the water.
Ahhh love swimming. Jophie used to LOVE swimming. So free and able to move all those stiff limbs. He's not allowed with his trach now. Just one of those "ugh I just don't know" sacrafices I had to make. I hated taking that away from him. One of the nurses bought him a Little Tykes sprinkler ball. Can't wait to try that out! :0)
On the O's....Not a dumb question girlie. Jophie has an uncuffed trach on purpose.
Our Ped. ENT/Surgeon protocol is to place only uncuffed trachs in his baby patients and patients who cognitively are like babies or any child who can not express verbally when something is wrong. It makes perfect sense too. Say Jophie would get a plug in that trach and wouldn't be able to tell me. Say it was in his sleep and I was sleeping as well. Sure the alarms would sound but when? After he wasn't breathing or his heart had stopped. This way IF for some oddball reason that trach would become occluded Jophie could breath "around" it till I figured out what was going on. It also makes it possibe and easier for him to vocalize with his speaking valve.
The O's we use when he's outside in the heat or when the weather requires him to breath harder/deeper ect. Jophie still has not mastered(and may never) the ability to consistently vocalize and/or create enough pressure/suction to open the flap on the end of the speaking valve. We do have an oxygen port for the speaking valve BUT, there is no hole/access to the inside of the speaking valve which just seems plain stupid to me.
So...for Jophie to actually get ANY of the oxygen from that port he HAS to conistently(every single breath) forceable create enough pressure to open and close that flap. He does it very randomly maybe only 1 to 2 times in an hour which gives him only that little "dab" of oxygen at those times. That is NOT enough for him and he begins to struggle to breath/drops his sat/ you get the picture.
We slap the canula on and he gets loads of O's right where it needs to be. With the speaking valve on the trach is covered causing the O's going through his nose to go around his uncuffed trach giving him exactly what he needs...
Very long explanation I know..Sorry bout that!
I'm so glad Jax got to enjoy a bit of the sunshine and the pool. Here's hoping he manages to get a few more dips before the summer is over! :0)
Talk soon!
Hugs,
Trina and Jophie
Awesome swimming pics.. i'm jealous. We haven't been back in the water since my infamous burn incident a couple of weeks ago (which i'm still getting over). I'm so glad you guys had a good day, you deserve it.
I love that idea you just mentioned on Stephanie's blog. I want to do that too!!!
WOW, Jax looks so HAPPY there in the water! How scarry it must be for you when he turns blue like that! I can't even imagine...I'm so sorry Lacey! Thank God you're as educated as you are;) Jax is a lucky boy to have such a wonderful Momma!!!!
Glad that Jax had a good day, despite the blueness...
Keeping you all in my thoughts & prayers like always...
Love ya'll!!!
Carter still hasn't warmed up to the idea of swimming. Loves to take a bath where the water is warm - hates swimming where the water is not warm. Cute picture with Jaxson and his goggles - he is posing so cute!
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