Wednesday, April 13, 2011

Catching Up & Good News

Well I'm back.  Have you missed me?  It's just been so busy around here the last few weeks.  Looking back I can't really remember what all we've been up to...but take my word for it, we've had lots going on.  Since I last posted, Beau's been to DC and I've been to Chicago, Atlanta and Birmingham for work.  We've all been sick and this week we've been working on our taxes (nothing like waiting until the last minute!) and lots of other stuff that is slipping my mind.  I really wish that there was some way for me to think things and it end up on this blog without me having to type it all out.  There would be all kinds of profound and funny things on here.  Maybe one day. 

Anyway, I've got good news to report on Gaines.  He had a pulmonologist visit on Monday...well, let me go back and start by saying that he's been going off oxygen 3 hours in the morning and 3 hours in the afternoon for the last few weeks.  I am SO proud of him and let me tell makes life SO much easier.  But back to the doctor visit...they think that he has now clinically past the point of his diuretics (meds that keep him from retaining fluid which make it harder for him to breathe) being effective.  Basically he's outgrown them.  He's done it at a snails pace, but at least he's done it. 

So, for the next two weeks we are to give him only one dose a day (as opposed to the two he's been getting).  After that, if he's not retaining fluid or working too hard to breathe, we can stop them all together.  Then, after that, we are to work on weaning him to the point of being off oxygen all waking hours.  Now, we won't know for a while if he'll be able to handle all this or how long it will take, but at least the doctors think we are to that point.  Once he's off all waking hours, we are to let them know so that they can set up a sleep study and see how he does at night.  I'm not sure what all that involves but I believe it will just mean a machine that will track him as he sleeps.  Once he passes that test, we are done with oxygen!  I cannot wait!

Now, once again...this is a  process and we don't know how quickly Gaines will be able to do it.  He has really bad lungs...but at least we are to the point of trying.  Can you tell that I'm trying not to get my hopes up too high?  The doctor did go ahead and schedule his next appointment in four months for the BPD (bronchio-pulmonary dysplasia...I think!) graduate clinic because they think he'll be totally off oxygen and a "graduate" by that point.  So, hopefully, we'll have an exciting and cordless summer.  Your prayers for a smooth and swift transition would be much appreciated.

In other exciting Gaines news...he's a walker!  I told y'all I just wanted him to be walking full time before his birthday (coming up in 10 days) and he is there.  His physical therapist actually released him yesterday.  It's been a pretty good week for the Gaineser. 

We are still working on the talking but I believe that its coming.  Its just going to take a little time.  He'll be evaluated soon by Early Intervention and I think they'll recommend speech therapy.  I don't know that he necessarily needs it...I think he'll get it eventually but, technically he's behind so I'm happy to have a little help with it.  I can't even begin to tell y'all what a blessing Early Intervention has been.  Free therapy that comes to your house.  And the two therapists we've had are good people who generally care about helping Gaines.  I mean, he's so cute that it would be hard not to want to help him but they really seem to care about his success. 

Reed is still doing well.  We thought he had chicken pox last week...he didn't.  It was just some sort of skin infection that kept him out of school for two days.  That's something we've been doing...trying to get our house healthy.  The same week Reed had his deal, Gaines had thrush and a viral throat infection and I had strep throat.  PS...I didn't know this but strep throat is more than a just sore throat...I felt like I had the flu for 3 days.  Not cool.  I ended up going to the doctor and getting a shot.  I'm not impressed.  I mean, yeah, my throat felt better the next day but my backside was sore for a week!  I don't know that it was a good trade. 

In other news...
-I painted my toenails an awful color of pink but I'm too lazy to change it right now.  So, if you see me out...just know that I know its bad. 
-Reed wasn't feeling good the other day and I asked him what was wrong.  He said, "I think I drank too much bath water".  At least he's listening! 
-When Beau checked on Gaines tonight, he found him with no pants or diaper on.  Just a little white hiney sticking up.  I'd like to say this is the first time but its becoming a regular occurrence when he's not in zip up pajamas.
-When I came home from work last Friday, I open the door and stepped in about an inch of water.  Reed had put too much toilet paper in there and it was pouring water.  The hardwood floors in my hallway are still drying out.  I really hope there is not permanent damage. 
-Beau got a new phone today and he's driving me crazy with it.  We do not need this much technology in our lives!  I tend to live by the mantra, just because you can, doesn't mean you should.  In all things really...I mean, this world is seriously getting out of control.  What happened to the simple things in life?  I won't even get started on that tonight but I could.  Maybe another day. 
-I do not love to fly.  Also, I do not love that Atlanta's airport now has a "smoking" section.  I don't care if you put up automatic doors, you can still smell it all the way down the concourse.
-Beau's birthday is tomorrow.  He'll be 32.  Happy Birthday Beau!  You are my best friend and I could not imagine life without you.  You are the best husband a girl could ever hope for and your boys love you as much as I do.

I think that's about it for tonight.  It's been a long day (it's been a long year!) and I'm worn out.

Love to all,



Mrs. Jackson said...

I've been missing your posts. Glad to see that all is going well. I just want you to know that my kids still ask about "the girl in the hospital in Washington" when they see pictures of Gaines on your post. Y'all will always be a part of our memory of DC.

Anonymous said...

It's so good to hear from y'all. That's great that Gaines is progressing so well. One of these days, he'll have no strings(tubes) to tie him down!

otherwise known as mom said...

Great news on Gaines!! I'm so glad to hear he's progressing. I'm just a stranger who stumbled upon your blog, but you captured my heart with your little man's story. I've tried to keep up with his progress. I'm so glad he's preparing to graduate to room air!