Tanner and Carter sat on Santa first. Of course, Mondo was too "old" to sit on Santa's lap!
Your going to die with this next one. Jax sat on Santa's lap, and he had the biggest smile ever. Family was dying, because for most of them, this is the first time they've seen him smile. Its only been this last year that he's really smiling again. Its hard to see because his face is turned, and Santa doesn't really know that he has to give Jax head support, but you can see his beautiful smile!
Its hard for me to explain how I feel right now for fear I might jinx it. Elation maybe? I'm sure a lot of it is I'm having so much fun with my two babies. But Jax seems to be doing so much right now, I am having more hope that some day he may actually be able to sit up on his own, or communicate with us better. Now in reality these hopes are a long shot, but a momma can hope right? His health is always the biggest concern. He's now completely off the ketogenic diet. Its so nice to not have to weigh, and make sure the water is a certain temp to make his food. Now we just pop the can and pour.Hey, its an extra 15 minutes in the morning that I now have!
His lungs are what is the scariest, they are just shot. His Tobi has been whats been keeping hospitals at bay. We do two weeks on, two weeks off, because he can't tolerate being off for a whole month, and by the end of that two weeks, he's needing it desperately again.
For now, I'm just enjoying being home with them, and enjoying the more alert Jax we are seeing!
Arina enjoyed looking at the people watching more than santa himself!
Before bed we had to try and get a pic of our babies in their super cute Christmas outfits!
Your children are so beautiful! I love that first picture of Jax with Santa:)
ReplyDeleteLacey...keep hoping!! You hope until your head hurts from all that hoping and then hope some more!!
ReplyDeleteJax is amazing...just what I've seen from when I started reading is amazing...who knows what that boy is going to do?
No one can tell us what our kids will and will not be able to do...we all hope for Jax!
And how cute are they with Santa? Love it!
I LOVE the pictures! Is Jax maybe doing more because of the stimulation of having Arina around?
ReplyDeleteAnthony has done so well so far, even with his medical issues, and the therapists, doctors, and I are convinced it's because the siblings are so stimulating and loving.
I LOVE the Jax smile!! Very cute kiddos indeed!
ReplyDeleteWhat's a Tobi? We will be seeing Day on Monday. Bummer! So close!
ReplyDeleteOh could they be any cuter???? HOORAY for smiles!
ReplyDeleteNever mind! I figured it out!
ReplyDeleteOh my goodness, could she be any cuter? That dress is adorable and I love the pic of Jax smiling on Santa's lap.
ReplyDeleteOh my goodness!! What a fabulous picture of Jax. Love it. Your sweet girl is as darling as ever. Do you think she is helping him want to progress - I don't know if that even makes sense - but I see an incredible bond between my Bella and my Joy and I see it through the pics of Arina and Jax
ReplyDeleteI LOVE the pictures of Jaxson - you are right he definitely looks so alert at the moment. Looks like you had a great day!
ReplyDeleteHope is what is all about Lacey.Always hope.
ReplyDeleteThe pictures are amazing.Tanner and Carter in their sweater vests,so handsome.Arina looking like the princess she is and then there is Jax ..
My sweet guy.That little guy that I love so and that smile,melts my heart.Absolutely melts my heart!
Love the picture of Jaxson smiling!! Also the pictures of Arina & Jaxson together. Too cute!
ReplyDeleteBeautiful pictures! I really do believe by look at the pics of Arina and Jax together that they have a special bond. She knows something. Cuties!
ReplyDeleteOh my - that picture with Jax & Santa is priceless. Love Arina's outfit, too!!!
ReplyDeleteArina's Christmas outfit it too cute! And I love the pictures of her mauling, or loving on :), Jax.
ReplyDeleteOh my word! That picture of Jax just made my week! He looks so much like Tanner in that pic too. Just adorable for both of them. Keep enjoying the moment and hoping for the future!
ReplyDeleteJaxson, you sure do get loved on by Arina, don't you! You are such a great big brother to put up with her antics. It looks like she's trying to stick her fingers in your trach!
ReplyDeleteLacey, I am loving the picture of Jax smiling at Santa. He really is much more alert and active, even Alex mentioned it at Disneyland. It's great! I will cross my fingers and pray that it will continue and continue. :)
I wanted to comment, you asked Skye's mom about testing for dysmotility. Emily has had it done. We did a motility study at CHOC. It was a bit messy and rough, but not too bad. They inserted these tubes through her g-tube into her intestines, and up her bum to her bowel. Then they put in liquid and watched to see how it moved and emptied, etc.
It showed dysmotility at the time, but it has improved quite a bit now. I wonder if your hospital can do a dysmotility study? Has he had an Upper GI with small bowel follow-through? That would give them some information too about his motility.
I wonder now that he's starting to grab things if he might someday be able to use switches. Those can be used for everything from operating toys to simple communication devices. Another idea would be an eye gaze board of close up photos of his favorite things. You may then be able to tell what he wants by the photo he looks at. I am interested in research of whether using photos on communication boards eliminates the need for symbolic understanding. I know infants will grasp photos as if they are actual objects. Jax is making progress and learning. Whatever his full potential is, he is getting the pleasure of discovering and learning about the world, just as any child would.
ReplyDeleteFirstly that is the cutest picture of Jax yet, that smile wow it's definitely intentional, he's happy and he's showing it. I wonder if having Arina around has had this wonderful effect om Jax, he must be sensing her presence and her devotion to him (as I see from the pictures)!! And yes Hope is what we all have for our kids, if we gave up on that we'd be pretty low on most days. So keep hoping and believeing and the most amazing things can still happen!
ReplyDeleteI enjoyed these pictures so much, such beautiful memories of Arina's first Christmas. She is going to be spoilt rotten and she probbaly doesn't know what's hit her, how her life has changed over night. Lacey your family has changed one childs life forever and all of you are truely blessed for that.
It sounds like things are looking up for you, and you're getting settled into life with 2 babies. Glad to see all the beautiful pics :) Never give up hope on Jax being able to do those things. Lib had brain damage and wasn't suppose to be able to walk or talk. But you know that didn't end up true. Merry Christmas to you and the family.
ReplyDeleteOh I am in tears right now looking at the pictures of Jaxson. I have hope too!! He is so handsome - all your boys are, but Jaxson just melts my heart. Blessings to you and you beautiful family.
ReplyDeleteLove those smiles Jax! You are such a handsome boy! And, it looks like your baby sister loves you A LOT too! So cute!
ReplyDeleteSometimes hope is all we have, so you go right on hoping girl!!! I'm so happy for you - that you get to feel such joy right now. you certainly deserve it. Hugs and love from CT!!!!
ReplyDeleteOutfits are ADORABLE!
ReplyDeleteLove that red bow!
ReplyDeleteJaxson's smiles is everything Lovable! Arina looks beautiful in her Christmas dress!
ReplyDeleteOh that baby girl is so pretty! I don't think I've ever seen eyes so blue. I bet her brothers spoil her rotten!
ReplyDelete