Tuesday, January 25, 2011

Keep on keepin on!

Still waiting, always waiting on doctors!
My ped now tells me she thinks he's aspirating his own secretions. We know that already, he's been doing that since he was a baby. I don't think that would bring sudden worsening of his lungs. She told me pulmo and cardio are going to talk and then let me know what they think. I've decided that we are going to CHOP no matter what! If CHOP tells us that its the aspirating, then I will believe that is the truth and we'll fix that problem. But I want them to take a good look at his heart, lungs, and his messed up vascular system. It will put this momma's heart at ease to have the best tell me there's nothing to be fixed there. Sorry Boston friends, Boston Childrens has yet to get back to me, and since we've already talked to CHOP, thats where we'll be heading. I guess you'll just have to drive to Philadelphia to see us ;)
RSV has now had some confirmed cases here, so we are getting into the heart of flu season. So more careful with Jax we have to be! I've been a little paranoid the last few days. He's been more junky, I've had to give a few doses of robinol. This morning his heart rate was high for him. 150's when he's normally in the low 100's awake. Praying this doesn't turn into anything, he can't afford that right now!

I found some pictures on the counter last night. They were pictures I had in my wallet, and dumped them on the counter when I cleaned my wallet out to go to Ukraine. I had to post them, because they are so dang cute.
Mondo looks so little! Since starting Junior high, he has grown up before my eyes!

Oh my Tanner. This was his graduation picture from his autism school, Pingree. He has tears in his eyes. Trying to get autistic children to put these clothes on and sit for a picture was quite an ordeal. I'm just glad we got a smile out of him!

This was when we first grew Carters hair out. He had bangs then. Some people like the bangs, I think they make him look more like a girl!

Best of all, baby Jaxson. This first one he's about 2 months old. I need to find my angel pic of him that was taken at the same time!

These last two were taken when he was about 9 months old. It was right after he got out of the hospital from his long stay. He was really weak so we had to prop him with his hands.
Look at that wild hair!


20 comments:

Rochelle said...

Praying he doesn't get sick especially RSV. Love the pics of the boys, super cute.

Becca said...

Oh my gosh, what adorable pictures!!! So fun to see how big they've all gotten.
Keep that little guy healthy this winter! When will you be going to Philly? We'll see you there. ;-)

Mama Mason-Mann said...

AWww, adorable pics! I'm so bummed you're not coming to Boston! :( boo. But glad you're going some place that will hopefully have some answers for you. I'll be thinking about you and watching for updates!

Amy said...

Maybe a bunch of us New England can make a carvin road trip out of it to visit you at CHOP.

Holly W said...

they all grow so quickly...it really makes me sad...
hoping you get some answers soon, and that poor Jax doesn't come down with anything in the meantime!

Meghann said...

All of those pictures are so cute! I can barely keep it together Jax is such a cutie!

Chromosomally Enhanced said...

Love the pictures! great look back!! hope all goes well with the peskey doctors! good vibes to good health..smiles

Becca said...

Lacey - in answer to your question on my blog, no we don't live exactly *close* to Philly (@3 hrs. away), but I'm from that area and am always looking for an excuse for a visit up there! Going up in a week and a half, as a matter of fact. :-)

Kristin said...

Oh my - look at that hair on Jax! That's why I haven't been over yet. Since Thanksgiving, someone at our house has had a runny nose, or worse. Hopefully we'll be able to come over soon.

Junior said...

Prayers that you can get some answers. Love the pics, so cute

The VW's said...

Such cute pictures of your boys in their earlier years! I just want to squeeze Jax....he was/and is so adorable!

Praying he stays healthy this flu season! I despise this time of year...snow and the flu, and trying to keep our kiddos healthy...UGH! Jax definitely doesn't need to get sick!

When do you think you will be headed to CHOP? I really hope they are able to get to the bottom of all of this and help Jax! Hugs!!!

Team Carter Jay said...

Love this post title!!

How cute is Jax in that last pic! <3 him!!

Kellan's momma said...

LOVE the pics of Jax (and the other boys too, all handsome!) His hair was awesome in those! What a sweetie, I hope his doesn't pick up any more crud, and I pray you finally get some answers! You are such an awesome advocate for him!

Anonymous said...

Praying for Jaxson. Adorable pics!
- Maureen C

joan's blessings said...

Hi, my daughter Hannah (the snugglie girl ) had chronic aspiration and we almost lost her several times...finally in 2000 we agreed to have a laryngotracheal separation done (also called trachael diversion) that has been an answer to prayer, she has not had pneumonia anymore since then...no more aspirations!! It is not reversable and was a big decision...but if that is jaxson's problem, might help him...although I understand surgery is not good for him....just wanted to let you know...still praying for your cuties

Kelly said...

LOVE the pics of the boys.....how fast they grow!!!

I'm definitely bummed that you will not be heading to Boston......
but the health of our buddy Jax ALWAYS comes first!! I hope you get the answers your looking for!!

Will pray that Jax makes it through the rest of the winter RSV/flu free!!

Runningmama said...

Hi Lacey, I hope you get some answers...wish we lived near Philly so we could meet you! I saw your question on my blog about what kind of cancer Emily has. She has exactly the same kind as Ella, only her hospital's protocol was to keep the child in until the ANC came up and our hospital lets us go home right after chemo until she gets a fever then we return until her ANC comes up. It's a little unpredicatable this way, but atleast we usually only end up staying a total of 2-3 weeks per round versus 4-5 weeks per round and we are so thankful for that! Love the last post with the pics of the princess too...she is just too cute for words!

Melissa M said...

I hope CHOP can get you the answers you need. I love Jax's hair in the last couple of pics!

Lacey said...

OH my gosh! Looking at these pictures makes me remember all those times where I babysat those little squirts and being SUPER nervous to watch Jaxson. Every beep, every move I felt I was walking on a wire! But I don't regret any of those moments! I remember watching a friends episode with Tanner, the one were Joey has the soup commercial and Tanner yelling the whole night "mmm soup! mm soup!" LOL Love those kids!

Shelly Turpin said...

I adore old pictures - wow Jax was an adorable baby!