Tuesday, May 20, 2008

One Step Forward......

We have been able to take Rhett off of his oxygen for a couple of hours a day now for the last week. I haven't said much since I didn't want to jinx anything, but we have had fun going outside and playing without any "strings" attached.

He has also been making strides in tolerating his feeds. He is now up to a full can of pediasure with water added over a 45 min period without refluxing most of it up. We doubled his Prevacid dose and it seems to have helped during the day. Night time is a totally different story of course, both oxygen and feed wise.

Lot's of oxygen and sloooooowwwwww feeds is the name of the game for night time. I can't complain though, he is sleeping like a champ. Something he hasn't done since his pre-heart surgery days. This is a good sleep though. Not a I'm-so-worn-out-I-can't-take-it-anymore-sleep.

Chloee is also making strides with her neck. She went to school today and was so happy to be back. I can't believe the school year is almost over. The 23rd is her Kindergarten Graduation. It's nuts.

Here is a picture I snapped of her getting her neck warmed up before PT, and seeing the chiropractor yesterday....

It's been a quite few days around here. I really like those types of days.


Niksmom said...

Hooray for quiet days and good stuff going on! I love the photo of Rhett walking! And Miss Chloee? She's a fashion trend setter with that cute skirt and the neck wrap! ;-)

Seriously, you deserve quiet, easy days after all you guys have been through!

Becca said...

Great news about Chloee and Rhett! Beautiful photo of Rhett walking outside, too.

Maren said...

Ya! It is so nice to hear good news. I just have to say you take beautiful pictures of your kids. I love them!


Isabella said...

Way to go Rhett!! I am so glad to hear he is able to get off the o2 some. Sometimes all they need is a little time.
Love and Prayers Always

Lily said...

Bless her heart! I like the picture of Rhett too!

Cynthia said...

I know this doesn't relate to today's post, but I just heard about this health care grant from a yahoo ds group and thought of you. It won't help with past bills, but it is worth looking into for the future.

Deadline: Open

The UnitedHealthcare Children's Foundation (http://uhccf.org/ ) has announced that new grants are available to help children who need critical health care treatment, services, or equipment not
covered or not fully covered by their parents' health benefit plans.

UHCCF provides grants to families to help pay for child health care services such as speech therapy, physical therapy, occupational therapy sessions, prescriptions, and medical equipment
such as wheelchairs, orthotics, and eyeglasses.

Parents and legal guardians may apply for grants of up to $5,000 each for child medical services and equipment by completing an online application at the UHCCF Web site.

To be eligible for a grant, children must be 16 years of age or younger. Families must meet economic guidelines, reside in the United States, and be covered by a commercial health benefit

Stephanie Nance said...

Quiet days are such a blessing! It is nice to be off oxygen, if even for a short time.

Anonymous said...

that is great news about rhett and cholee cute pictures !
lots of hugs to you all !!!

Anonymous said...

I am so glad Chloee's neck is feeling better. Physical therapy can work wonders.

Rhett is off of the oxygen a bit! That is fantastic. I bet he does feel a sense of new found freedom.

Childlife said...

Poor Chloe! What a trooper she is -- that smile is just something else! :)

So glad to hear things are getting better for Rhett with his feeds and oxygen too!