Sunday, April 25, 2010

My emotionally exhausting weekend!

Carly's death has hit me extremely hard. I think harder than any other death we've endured so far. I don't know if its because we don't know what happened so suddenly, or if its thinking of her heartbroken father having to give his daughter CPR in his own home!

Jaxson is making me crazy!

I hate trachs! I so miss the days of the nasal cannula's and tender grips! We think he has allergies. His ped is pretty sure thats whats going on. He is super junky and coughs all day long. We've added three new meds to his regimen, pushing our total meds now to over 20 a day! Crazy! And the kicker is none of the new ones seem to be helping. NONE. Why? He's on oral steroids, a nasal spray, and Xopenex. We wanted to go to see Oceans today, but I didn't want to take Jax. So we gave him trazadone so he would sleep through it. Nice, I had to drug my baby just to do anything! Its been exhausting.

This little stinker!
If you'll look at his t-shirt, this is going to be in the auction next week. One for a boy and one for a girl. They have different pictures to choose from. This one was given to him on his birthday.

Today he did roll over and worked on head control a little.
Pushing up...

Pretty straight...

Starting to lose it...

Its gone!


Saturday I had a mothers lunch with Intermountain Healing Hearts, our local CHD group. Of course,you may know that Paul Cardall is in that group. His mother spoke about life with a child and CHD's back in the day where they didn't have the technology they do now. And Paul played a few songs, including Gracies theme, one of my favorites. There's nothing like listening to his music live from just a few feet away!
Also if you'll remember he is giving me some signed CD's to auction next week!
My pictures turned out too dark, luckily Kristen took some great ones! (although I do look fat and horrible)



After the lunch we had baseball games for both boys. Both boys won, Carters team is undefeated! We went bowling that night with Michelle for Kylers birthday. We were about 30 mins away from home. When we went to switch out his oxygen tank we realized we didn't have a spare in the car. The first time this has happened in a long,long time. So we had to run home! Sats were 78 when we got home and put him on his oxygen! Oops!

15 comments:

Groettum Family said...

ummm the picture of Jax with his hand under his chin?!? BEST picture ever! LOVE it!

I'm sorry you've had such a hard weekend (((hugs)))

Stephanie said...

I am sorry that things are hitting you so hard. This has definately been a shock. I think it affects us all so much because we kind-of prepare ourselves for something to happen when these kids are sick...this was just so out of the blue. It makes you think the other shoe is going to drop. We learn to live with this with our kids, and when it happens it scares all of us to the core.

Both Paul and Jaxson are looking great! Way to go with that rolling over & upper body exercise Jax! :)

Lacey - Have you tried Rubenol on him? I can't remember if I have asked that before. It is supposed to dry up secretions. (?)

Hugs to you all.

Steph & christopher

Kristin said...

Wow - you did have a busy weekend. It was a good luncheon. Nice job on the baseball! I finished a couple more bows today :)

stephanie said...

I can't come to grips with the loss of Carly either. This has knocked me over for sure. I think it Definitely because it was so unexpected. have you heard anything?

And goodness how is Michelle!!!!! I miss her blog. Are they all OK!!!

The VW's said...

I LOVE that 4th picture of Jax!!! He is doing great holding his head up from a belly position! Have him come over and teach Gavin that trick....Gavin is very lazy on his belly!

Sorry about the cough and all the meds! You must be going crazy! Praying something helps...soon!

I have been sick and sad all weekend thinking about Carly and what her family must be going through! I think it's so hard on our DS community because this was SO NOT expected! She was doing so well! It just doesn't make sense and it sure doesn't seem fair!

Hang in there Momma! Love, Hugs and Prayers!!!

Donna said...

How neat to see Paul Cardill...such an inspiration and has been through so much himself! Praying for you and Jaxson.

Anne and Whitney: Up, Down and All Around said...

Lacey - I know what you mean about Carly, I am just heartbroken! I think the shock of it being so sudden and unexpected makes it so much harder to believe! I am just devastated for them!!!
I do not know much about trachs... how long will jax have to have a trach? is there any chance he could go back to a nasal canula anytime soon? he looks really good in the pictures where he is pushing up! glad he is really rolling over now!!!

mom26kids said...

Hi Lacey, it has been a while since I have posted. so sad to hear about your friend I can't imagine what they are going through right now. On a happier note I am so happy about your adoption I hope it goes quick and you can get her home.
love angie

CFMama said...

I am so sorry to hear about Carly. I am sure it must be difficult being so unexpected and all. Stay strong (hugs)

Jax looks adorable in the photos on his tummy. That shirt is awesome!! Did you make it?

ANewKindOfPerfect said...

Oh my gosh, look at how hard that handsome boy is working! Rolling over AND holding his head up? Amazing. :) I hope you can get to the bottom of his allergies and such soon. I hate adding medication after medication and STILL dealing with problems.

Carly's passing has affected so many people who never met her. She seemed so healthy and strong. I literally burst into tears every time I see her picture on someones blog. My heart is aching for her family.

carolyn q said...

I am so glad that you were able to be in attedance.
I am so sorry to hear of your little friends passing.
Love the pictures of Jaxson!
(HUGS)

Anderson Family said...

I can't believe it about Carly either. So sad - so tragic! Praying for their family!

Did you pose Jaxson with his hand holding his head up - that is the cutest picture ever!

And running out of oxygen - ooohh not so good! Sounds like the time we went for an overnighter and I remember everything except the nasal cannula!! Hello - can't do much with an oxygen tank without a cannula! Makes for fun times and memories though!

Team Carter Jay said...

He needs to come over and teach Carter those tummy time tricks! Look at him working so hard, little cutie pie!

Colleen said...

Those are great pictures of Jax getting stronger by the day. What a trooper! I'm sorry to hear about your friend's passing, I'm praying for her family.

Ruby's Mom said...

Oh,Lacy,I just love your little Jax man.What a sweetheart.
I have just been in tears off and on since Friday when I read about Carly's death on Facebook.Our children with Down syndrome are so fragile.Carly's death has made me appreciate my Ruby and other children with Ds even more.
You have a special place in my heart and prayers because you are such a loving and wonderful Mother.I'm so happy for you to be getting your little girl.