Thursday, January 28, 2010

Life This Week

Life this week has been a little on the rough side. I think Beau thinks I'm probably overstating things but I am just slap worn out. The nanny (who will now be referred to as Kristen. "Nanny" sounds a little pretentious to me...we are not "nanny" people) and I took Gaines to Birmingham for his pulmonologist appointment (more on that in a sec) on Monday and didn't get home until 7:00. This might not have been quite so bad if a large portion of the time from 4-7 had not been spent stuck on the interstate with my sweet angel "singing" in the back seat.

Beau went out of town Tuesday so I had the boys by myself Tuesday night, Wednesday morning and Wednesday night. Let me just say right now that Beau has me trapped. There is no way I could be a single parent. (That is obviously a joke about being trapped...sometimes I feel like I have to clarify my jokes on here...Beau and I are very happily married...99% of the time...another joke...I'm on a roll tonight...we are always happily married) ANYWAY...back to the point, the two nights were constant but doable...Wednesday morning killed me. I hadn't been so happy to see my desk chair since we got back from DC. Gaines' cold didn't help because it meant he had to have a breathing treatment first thing which means 30 minutes of me just sitting there with the nebulizer. In the mean time, my angel Reed climbs into my bed and has an accident. Awesome. Strip the bed, start the laundry...Oh, Jack has thrown up four times on my rug. Double awesome. I'll spare you the rest but suffice it to say, it was a long morning.

So, Thursday rolls around and Gaines' cold is in full force. I mean he's pitiful...not eating, wining, sleeping and I can tell that Kristen is worried about him so I leave work early (where I had plenty to be doing) and come home to check on him. Thankfully since the pulmonologist had just seen him he called in a steroid and antibiotic for him. I was so stressed and worried about him (he's really pretty sick) that I called Beau right at 5 and begged him to come home. He does and by the time he gets there, the little joker is all smiles and bouncing in his jumperoo. My only guess is that the Tylenol had kicked in (and yes I got permission to give it to him, I would have never just done it with all the other meds he's taking). So, being the total loser that I am, called my friend I was supposed to work out with and begged out of it. I really did (and still do) have a terrible headache...I'm typing through the pain. Your welcome.

So, now that I've filled you in on way too much of my week...Gaines' appointment. Gaines had a great appointment! He was a touch sick but I think the doctor was able to tell that he's improving. So much so that after this cold, we are going to try and turn his oxygen down to 3/4 liters! Now, I'm trying not to get too excited because he may not be able to handle it but at least the doctor thinks its worth trying. Also, after about a week of that, we are to get some blood work done and if that looks good we can cut back on the Lasix to .25 mL. So, please say a prayer that all will go well and that he'll be on less oxygen and medicine soon. He also said that if his weight gain and labs look good when we go back in 2 months, we can come up with a plan to start really weaning oxygen and meds! AND he reconfirmed my hope of Gaines being off oxygen by June...at least during the day. I'm so trying not to get my hopes up about it (Beau thinks it will take longer) but wouldn't that be awesome? Also, we are increasing the volume of his bottles in an effort to help his weight gain...it was good this time but not quite what we'd love. I was not surprised being as it is next to impossible to go 24 hours without some sort of spit up. We did however just up one of his reflux meds so maybe that will help.

Just a side note, I normally hate saying things like meds instead of medicines (don't even get me started on AC and OJ...I almost couldn't marry Beau over those two) but I've just given up on un-shortening things. I only have so much time in the day.

Oh, this is kind of funny. Reed finished his milk at dinner the other night and asked for water so I gave it to him. This was a night I was home alone with them so he was eating while I was tending to Gaines (I normally prefer family dinners but you do what you can when you're a single parent). I went back to check on Reed and he had spit water all down the front of his shirt. He looked at me and said, "I spit up".

Reed also likes to test his boundaries these days but I hadn't realized how much "discipline" he was getting until the other day I heard him talking to his truck. He said, "You do NOT do that. Do you need a 'pankin, truck? You go to timeout." He really is a sweet boy, just being two and trying to figure out what he can get away with.

I think that's about it for now. I'm tired. Please pray for our little Gaines and that he gets over this cold quickly and that he can handle 3/4 liters.

Love to all,

Brittany

Saturday, January 23, 2010

Two New Videos

Reed has learned his ABC's and Gaines' physical therapist said it was okay for him to use his jumperoo...He loves it.

video

video

Tuesday, January 19, 2010

PT Report

Good Morning! Just a quick post during breakfast to update on Gaines' physical therapy appointment yesterday. By the way, how awesome is it that the therapist comes to our house?

Gaines got a good report yesterday. She was very pleased with his sitting up while propped on his hands. I think he's getting better with that everyday. You can really tell his trunk is getting stronger. Hopefully in the next few weeks he won't need to prop on his hands and will be able to sit straight up playing with a toy.

His legs are still improving but are still not there yet. There is still some tightness in his hamstrings. So, I'm asking for that specific prayer request. Please pray that at his next appointment in a few weeks, his hamstrings are not as tight. So far Gaines has overcome every obstacle he's had and I pray that this will be the case with this.

He was also approved to use his jumperoo. They are controversial among physical therapists but she felt like the pros outweighed the cons for Gaines. He loves it. It took him a little while to figure it out but now he's jumping like an old pro. I'll see if I can get my technical assistant to post the video soon.

Also, please pray that Gaines avoids Reed's cold. Reed has a pretty good cough and runny nose that I'm hoping we can keep Gaines from catching.

I'm off to the shower.

Love to all,

Brittany

Monday, January 11, 2010

Priceless Video

Brittany and I were in the kitchen making dinner when we heard Reed "reading" one of his books. We peeked around the corner and couldn't believe what we saw. He was reading to Gaines.

video

Sitting Up!

Just a quick post to let you all know that Gaines sat by himself in the floor yesterday (propped on his hands) for a full minute. The first time was 15 seconds, then 30, then a full minute. I'm so proud of him and just wanted to share. If you haven't read in awhile, there is a post from Saturday below.

Love to all,

Brittany

Saturday, January 9, 2010

Endurance

Well we are in a new year. The holidays are over and we are busy getting focused on a new year. I PRAY that 2010 is better than 2009. I feel a little weird saying that because a lot of good things happened to us in 2009 but it was definitely a tough year for us.

As of now, 2010 is looking promising. Right now I'm sitting in the den floor watching Gaines actually play in his exersaucer. He can spin himself around and fiddles with all the little toys in front of him. It's progress for Gaines and that makes me happy. Beau and Reed are out buying a little bookshelf for Reed so he'll now have a place for all of his books. When your mother is a librarian, your child ends up with a lot of books. Its great because Reed loves to read and now we'll actually have a place for all of them.

In honor of it being a new year (albeit 9 days in) I thought I'd talk about what I'm working on as my new year's resolution. I'm working on my patience (among other things) but patience is definitely number one. A week or two ago I was really struggling with being patient...particularly with Gaines and particularly with his reflux. I'm sure it was combined with a lot of other things but I've just been so concerned about it and I get frustrated because there is nothing that I can do to fix it. Now, I 100% know that it is terrible for me to get upset with him because I know he can't help it but when you are cleaning up vomit (sorry to be gross but that's what it was) for the second night in a row...for the second time that night (and I'm talking middle of the night, sheets and pajamas changed, everything...twice) you tend to get a little annoyed with your child, no matter how much you love them...and I promise I do love him.

Anyway, it hit me that night as I flung myself in the floor crying and feeling so sorry for myself (yes, myself and not the poor baby with throw up in his hair...I know, no criticism needed..I'm terrible) that maybe I could use a little more patience. And maybe that I should be praying for it, and maybe I might should just be praying a little more anyway, and maybe being more diligent about reading my Bible and spending time with God. Crazy concept, huh?

Anyway, I know most of you don't visit this blog for my crazy ramblings so here is the update on the boys. Gaines' reflux does seem to be getting some better. It's not totally gone but its improving...some. We have finally changed his formula to Alimentum as per his nutritionist. It's a hypoallergenic formula (which PS, smells like what a cheese flavored dog food might smell like) and as soon as I realized that, a light bulb went off in my head. Beau was allergic to cow's milk when he was younger and Gaines has been on cow's milk based formulas. I don't know that Gaines is allergic too since the formula change hasn't been an instant fix but I do think its helping. Also, I read a while back that babies with Chronic Lung Disease have a higher instance of reflux because they have to breath so much harder and it stretches (I'm paraphrasing of course) that muscle at the bottom of the esophagus that is supposed to keep food in the stomach.

But anyway, the other Gaines news is that he thinks Reed is hilarious. If Reed is in the room, Gaines is watching him and usually laughing at him. His hair is growing in and he looks to me, just like Reed did. It's weird how much they look alike. He loves to stand up with you holding his hands and his therapist was very impressed with that. The hamstrings still have a little way to go but are progressing. The goal we are working on now is sitting up. It's just hard to work on that because we are so careful with him for fear of him spitting up. The spitting up got pretty bad and he lost a good bit of weight. I'm hoping that he's back on track now.

Reed moved up to a new class this past week at school...probably because he's so advanced (or maybe because he was one of the oldest and they needed his spot...and it wasn't just him that moved up but I like to go with advanced). He's doing really well in the new class which I'm happy about. I was a little worried because now he's the youngest with a lot of bigger kids and he's had a hard time adjusting to new classes in the past but he seems to be doing great. This class really focuses on potty training and I can already tell a big difference. I'd say he's gone from about 85% there to 90%. He still needs to work on telling us when he needs to go although that is improving and we haven't attempted naps or nighttime yet at all. I'm not complaining one bit though...the amount we spend on diapers has dropped dramatically.

Reed is so funny these days. He talks like a grown up and at the grocery store this morning he said, "Your doing awesome mama, your doing a great job." Is that funny or do I just have a false sense of how hilarious my child is? I'm going with funny. It's crazy that I have one of the smartest, cutest and funniest children around. That is a joke...I know I'm totally biased. And I haven't forgotten about Gaines. He's absolutely beautiful. Sorry, but he is. I'm so lucky to have this family. I think it would be hilarious to read a post that I might type at about 7:35 a.m. as we are struggling to get out the door and neither child wants to cooperate. I know for sure that that post would be a far cry from this one.

Speaking of Suzy-Sunshine, I read something in a little devotion book the other day that really stuck with me given our last year. It was about endurance. I'm about to plagiarize it but maybe it might stick with some else that's had a rough year.

"As you know, we considered blessed those who have persevered. You have heard of Job's perseverance and seen what the Lord finally brought about. The Lord is full of compassion and mercy." James 5:11

Endurance in faith, hard as it may seem, brings happiness. Trials are not a sign of God's disfavor or his will to carelessly punish his children. The tenderhearted Savior never acts cruelly. But through troubles, we draw close to Him and see God's power at work in our lives. Then, like Job, When we persevere in faith, God rewards us bountifully.

If you have any doubt that that is true, just look at my life.

Happy New Year to all...I'm off to organize toys and outgrown clothes. Don't be jealous.

Love to all,

Brittany