Wednesday, April 27, 2011

Two

Well gang...our Gaines is two.  I cannot even believe it.  The first year of his life seemed like it took 10 years (and probably took 10 years off my life) but this last one has gone by amazingly fast.  I'm starting to see him progress on a daily basis and the last several weeks and even months have been so good.  I'm not going to lie...I love that child with all my heart, but his first year was H.A.R.D. and there were times this year when I thought I was going to pull my hair out but it seems like now we might have turned a corner.  Don't get me wrong, he's two now and he has two year old fits and two year old power struggles but man...he is so enjoyable lately.  I hope that doesn't come out wrong.  Obviously I enjoy my children but the hard times with Gaines are fewer and fewer.  And I can't tell you how awesome that is.

He's gotten so "big" lately and so grown up.  I can't even really explain it.  He's just doing more grown up things.  He's been going to Gymboree this spring and is doing well there.  He's been eating better now that he's not on his appetite stimulant anymore.  He's also off his diuretics so maybe that's what it is.  Who knows?  At this point we are down to one medicine a day...well two I guess...Prevacid and Flovent (a puffer med so I don't really count it).  If things continue to go well we will start pushing for 4 hours off oxygen this weekend.  The 3 and 3 he's off now has also made such a huge difference.  Not having to haul around an oxygen tank anytime we leave the house is so nice.  I can't wait for it to be like that full time. 

Tomorrow Gaines get's assessed to see if he qualifies for Early Intervention speech therapy.  I feel pretty certain that he will.  He's making improvements but he is still behind in his speech.  I kind of think he'll end up getting it on his own...but if he qualifies for the therapy, I'll take any help he can get. 

Oh...you know how I've said before that I love seeing Gaines do things that Reed does or has done?  Well tonight Gaines was playing in the bathtub laying on his tummy...like Reed does all the time.  It just looked so "little boy playing in the tub". 

Anyway, we celebrated his birthday two weekends ago in Birmingham with Beau's side of the family and last weekend in Andalusia with mine...which was also Easter.  The pictures below are from the past weekend.

 In the swing at the Dream Park.


Loving life outside Saturday afternoon while Reed played in the sprinkler.

Not really loving life so much when the sprinkler hit him. Does it make me a bad mother that this picture makes me laugh?

Sweet brothers playing together.

Happy again.  These pictures don't even do him justice...he is such a beautiful child.

Cooling off with a Capri-Sun.

Sans cannula with Grandaddy (well my grandaddy, his great-grandaddy) at his birthday party.  I am loving seeing that whole face more and more.

Hunting eggs with cousin Sarah Anne.

My family with my grandmama.  I wish I'd gotten pictures with my other grandparents!

Cute little family of four.

Ok...this took a million years to put together.  I'm out for tonight.

Love to all,

Brittany


Monday, April 18, 2011

New Pictures












    Reed ready for his 1st Baseball Game.




                Gaines in the backseat with his shades on.




    Gaines didn't care for the Easter Egg Hunt, but loved the slide.




                                    Gaines and Beau




       Gaines chilling out in a rocking chair without his oxygen.




                                   Gaines Walking!!!




                 Brittany & Reed riding a camel at the Zoo.




                                        Reed and Beau



                         Brittany on the carousel at the Zoo.

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 you...it 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,

Brittany