So...guess who's got a tooth? Well, all of us I guess...but now that includes Gaines! You can't see it too well yet but you can definitely feel it. He's had a pretty good week the past week except with his eating. He's kind of been on strike and spitting up whatever he decides to eat...yes, the reflux is back. No idea what got into him but we started back on the breathing treatments in case there is something in that medicine tied to his appetite. Anyone got any ideas on this? I love that they day we hear he needs to gain weight, he goes on an eating strike. I'm this close to "medicating" him with some sweetened condensed milk 3 times a day for some extra calories.
Reed has been great this week too. In between a couple of tantrums that is. He is really such a good child and has not really been into this "terrible twos" business...until this past week. In he last couple of days he's thrown two fits that just came out of no where and were over the craziest things. One, because he couldn't decide if he wanted to run to the grocery store with Beau so Beau finally left him and the other, because he didn't want to leave school when I picked him up one afternoon. Both times it was constant crying and screaming, "I want to gooooo...I want to gooooo...sob sob sob...." or "I want to stay here....I want to stay here..." Falling out in the floor and everything. I ignored the one at home but didn't know what to do when he did it at school. I pretended to just leave him but he called my bluff and I had to go pick him up. Also, I wasn't sure if the other mothers were looking at me with a "Way to be strong" look or a "Do something with your child" look. One of them said, "Is he two?" How could you tell?
I'm sure those will not be the last tantrums I see out of Reed and I'm a little afraid of what is to come with Gaines. That boy has a temper. To say he's spoiled is putting it mildly. I guess the world (at least our world) has kind of revolved around him the last year so I guess it makes sense but wow...that child will let you know when he's less than pleased with you. Just try walking out of the room if he doesn't want you to. And don't even try to change his clothes. He won't have it.
I guess that's about it for now. I just realized that this kind of turned into a post about the flaws of my children. Sorry...just keeping it real I guess. As crazy as they drive me sometimes, I promise...I really do love them. Especially now that they are both asleep. Love me some sleeping babies and a still house.
One quick thing, speaking of driving me crazy. I told Reed this week (when he decided that it was hilarious to not wear his pants) that he drives me crazy sometimes. He said, "I dub (love) to drive you crazy".
Love to all,
Brittany
Thursday, April 8, 2010
Sunday, April 4, 2010
Beautiful
Happy Easter! We are about to start our mad dash to get ready for church but first HAD to share these pictures. A friend with an incredible gift for photography (and taking pictures of children!) very generously offered to take some pictures of Gaines for us. Here's the link to the first three he sent us. I LOVE them.
I hope I can get this to work. There is probably an easier way but this is the best I can do. You know I'm not so computer savvy.
Go here:
www.britsnapphotography.com
Then scroll to the bottom of that page and click the facebook logo. Once the facebook page is up you can see the note Gaines-God's Miracle. Click on that and you can see three of the pictures that Martin took yesterday. I'd highly recommend him for anyone in the area wanting pictures done of their kids. He even got Reed to stand still for a few!
Happy Easter and Love to all,
Brittany
I hope I can get this to work. There is probably an easier way but this is the best I can do. You know I'm not so computer savvy.
Go here:
www.britsnapphotography.com
Then scroll to the bottom of that page and click the facebook logo. Once the facebook page is up you can see the note Gaines-God's Miracle. Click on that and you can see three of the pictures that Martin took yesterday. I'd highly recommend him for anyone in the area wanting pictures done of their kids. He even got Reed to stand still for a few!
Happy Easter and Love to all,
Brittany
Monday, March 29, 2010
Big Day
Before I get to Gaines' big day, I just wanted to thank all of you who still read this blog...even if you just check in from time to time and especially for those of you who have prayed for Gaines and our family. Today's good report was due to your continued prayers. Reed and I visited Andalusia over the weekend and actually got "out" a little. I ran into so many people...some that I do not even know well...that would ask me how the zoo was, or if Gaines was crawling yet. I was just amazed at all the people that actually cared about my little boy and family and were still keeping up with us. I tell you, there are a lot of bad and crazy people in this world but for everyone of them, their are five good ones.
Moving on...
Our little Gaines has had a big day. He had a doctor's appointment in Birmingham today with his pulmonologist (more on that in a second) and when we got home this evening...he crawled! I cannot even begin to tell you how proud I am of him. As soon as I saw (and confirmed that he was actually doing it...you know how I feel about giving him false credit) I got the biggest smile on my face. I have not been that excited in a while.
I know mothers are always proud of their kids' milestones but Gaines' are just extra sweet. There are so many things that we haven't been sure about for so long and to see him do something like crawl just makes me so happy. There is just no way to know if Gaines will have any sort of problems from his spells of not wanting to breathe correctly until he actually marks something off his milestone list. Let me clarify...he's not crawling marathons or anything, but he crawls a few little "steps" at a time. Beau got it on video...its at the end of this post. Also, I think he might be pulling up in the next few weeks. Things are just really starting to click for him and I could not be happier.
In medical news, Gaines had a great check-up today. We've been given permission to turn him down to a half liter on his oxygen. I'm waiting on him to go to sleep tonight before we do it. He's just still when he sleeps and we can get a good sat reading on him and really tell if he's handling it ok. Say a little prayer that it will go well.
The plan oxygen-wise is just to leave him at a half liter until his next appointment (in two months). Hopefully by then he'll have gained enough weight (he was 16 lbs 13 oz today) that we can cut his other two diuretics. Once he gets big enough, he'll have sort of outgrown them. I'm hoping that at his next appointment we can cut the diuretics and have a plan to wean oxygen over the next couple of weeks. They explained to me today how they will know when he is ready. I won't bore you with all of it but one part was by watching his carbon dioxide levels. At his first appointment his was at 39 and today it was at 33. When his is around 28, we'll know he's ready to go without oxygen. So...prayer requests, 1. Weight gain! We want to lose those diuretics. 2. Lower carbon dioxide levels and just all around lung development. All in all, his doctor only had great things to say and even commented on how well he was doing developmentally. A gold star appointment.
Oh, we've also gone to albuterol treatments as needed and not twice daily...yay! Hate it for you CVS.
On a more serious note...I never leave Children's Hospital without being thankful that we are only dealing with Gaines' lung issues...problems that will get better. There are so many kids at that hospital that would be grateful to have Gaines' problems. I mean, you see those little kids with bald heads and you know what they are there for and it just breaks your heart. Or kids in wheelchairs or you hear your doctor talk about his chronic ventilator patients. Everytime I'm in the parking deck there I think, everyone of these cars is here for a sick child...and that is just on one given day. Be thankful for healthy kids and please say a prayer for all of those that are not...and the ones dear to my heart, the ones who aren't born yet but are fighting to have a chance to try. Little ones like my Gaines who is not only trying but succeeding. Was that a little cheesy? Sorry...but he is. That little joker is a miracle.
Now...I hope you all appreciate the sacrifice I made for you tonight. I will wake up in the morning and my house will not be straight and no one's clothes will be picked out and I'll be rushing around with a little extra "my house is a wreck" stress but at least you all will be updated. Kidding of course...but my house really has been neglected tonight. Does my sarcasam come through or do I need to specify the kidding? Either way...
Oh...I turned Gaines down to a half liter and guess what? He's satting 99. Granted he's sleeping flat on his face which could account for a 99 but wow! Please pray that it continues.
Love to all,
Brittany
Moving on...
Our little Gaines has had a big day. He had a doctor's appointment in Birmingham today with his pulmonologist (more on that in a second) and when we got home this evening...he crawled! I cannot even begin to tell you how proud I am of him. As soon as I saw (and confirmed that he was actually doing it...you know how I feel about giving him false credit) I got the biggest smile on my face. I have not been that excited in a while.
I know mothers are always proud of their kids' milestones but Gaines' are just extra sweet. There are so many things that we haven't been sure about for so long and to see him do something like crawl just makes me so happy. There is just no way to know if Gaines will have any sort of problems from his spells of not wanting to breathe correctly until he actually marks something off his milestone list. Let me clarify...he's not crawling marathons or anything, but he crawls a few little "steps" at a time. Beau got it on video...its at the end of this post. Also, I think he might be pulling up in the next few weeks. Things are just really starting to click for him and I could not be happier.
In medical news, Gaines had a great check-up today. We've been given permission to turn him down to a half liter on his oxygen. I'm waiting on him to go to sleep tonight before we do it. He's just still when he sleeps and we can get a good sat reading on him and really tell if he's handling it ok. Say a little prayer that it will go well.
The plan oxygen-wise is just to leave him at a half liter until his next appointment (in two months). Hopefully by then he'll have gained enough weight (he was 16 lbs 13 oz today) that we can cut his other two diuretics. Once he gets big enough, he'll have sort of outgrown them. I'm hoping that at his next appointment we can cut the diuretics and have a plan to wean oxygen over the next couple of weeks. They explained to me today how they will know when he is ready. I won't bore you with all of it but one part was by watching his carbon dioxide levels. At his first appointment his was at 39 and today it was at 33. When his is around 28, we'll know he's ready to go without oxygen. So...prayer requests, 1. Weight gain! We want to lose those diuretics. 2. Lower carbon dioxide levels and just all around lung development. All in all, his doctor only had great things to say and even commented on how well he was doing developmentally. A gold star appointment.
Oh, we've also gone to albuterol treatments as needed and not twice daily...yay! Hate it for you CVS.
On a more serious note...I never leave Children's Hospital without being thankful that we are only dealing with Gaines' lung issues...problems that will get better. There are so many kids at that hospital that would be grateful to have Gaines' problems. I mean, you see those little kids with bald heads and you know what they are there for and it just breaks your heart. Or kids in wheelchairs or you hear your doctor talk about his chronic ventilator patients. Everytime I'm in the parking deck there I think, everyone of these cars is here for a sick child...and that is just on one given day. Be thankful for healthy kids and please say a prayer for all of those that are not...and the ones dear to my heart, the ones who aren't born yet but are fighting to have a chance to try. Little ones like my Gaines who is not only trying but succeeding. Was that a little cheesy? Sorry...but he is. That little joker is a miracle.
Now...I hope you all appreciate the sacrifice I made for you tonight. I will wake up in the morning and my house will not be straight and no one's clothes will be picked out and I'll be rushing around with a little extra "my house is a wreck" stress but at least you all will be updated. Kidding of course...but my house really has been neglected tonight. Does my sarcasam come through or do I need to specify the kidding? Either way...
Oh...I turned Gaines down to a half liter and guess what? He's satting 99. Granted he's sleeping flat on his face which could account for a 99 but wow! Please pray that it continues.
Love to all,
Brittany
Sunday, March 21, 2010
The Zoo: Pictures and a Video
Yesterday the weather in Montgomery was 70 degrees and sunny. A perfect day to be outside. So, we made our first venture out as a family. We all went to the Zoo. This was one of the first times we have taken Gaines anywhere other than the doctor. Certainly the first time we have gone anywhere as an entire family. It was pretty funny, as we were parking the car Reed said, "Gaines is gonna stay in the car". I guess Reed just isn't used to Gaines going anywhere with us. Anyway, all in all it was good day and it felt so normal to be able to all go somewhere together.
Below are two pictures from the Zoo and a video of Gaines attempting to crawl. He is so close...he will be scooting around the house soon.
Our Family at the Zoo
Reed at the Zoo
Gaines learning to Crawl
Below are two pictures from the Zoo and a video of Gaines attempting to crawl. He is so close...he will be scooting around the house soon.
Our Family at the Zoo
Reed at the Zoo
Gaines learning to Crawl
Wednesday, March 17, 2010
One Year Ago
Wow...so tomorrow it will have been one year since my water broke 900 miles from home and changed our whole world. I looked up some of our earlier posts just now and and I'm flooded with the memories. The posts that we made right after Gaines was born made my eyes sting. I guess the memories have faded but reading some of that brought it all back. I remembered how hard it was. How scary. How every day seemed like a week. How I just wanted to throw myself in the floor and give up some times. How I'd just cry and ask God why.
Its amazing what a year does.
Right after Gaines was born and was still fighting for the non-critical label, I wrote something about him opening his eyes and looking at us a few times. Now, that same baby looks at me and says "pllthtlth"(you know that noise) and laughs when I try and give him medicine or a bottle. Stinker. I tell you, Gaines is just so precious and I could not be prouder of how hard he's fought this past year. He's incredible. I just tear up when I think of all he's endured and pushed through the last year. Its been a looooong year but it could not have been more worth it. We have Gaines...and I know he's going to be fine. (I'll update more on Gaines later...I'm running out of battery).
We've been through the hardest year of our lives but we've come out ok. We have had incredible ups and downs the past year but we've made it. I would never ask to re-live this past year but I'm thankful for it. It has done so much for me and my family. We are stronger, we appreciate each other more, we take less for granted, we have more compassion for others...and I'm thankful for all of that. Thank you all so much for keeping up with us and praying for our family this last year. We love you for it.
Love to all,
Brittany
Its amazing what a year does.
Right after Gaines was born and was still fighting for the non-critical label, I wrote something about him opening his eyes and looking at us a few times. Now, that same baby looks at me and says "pllthtlth"(you know that noise) and laughs when I try and give him medicine or a bottle. Stinker. I tell you, Gaines is just so precious and I could not be prouder of how hard he's fought this past year. He's incredible. I just tear up when I think of all he's endured and pushed through the last year. Its been a looooong year but it could not have been more worth it. We have Gaines...and I know he's going to be fine. (I'll update more on Gaines later...I'm running out of battery).
We've been through the hardest year of our lives but we've come out ok. We have had incredible ups and downs the past year but we've made it. I would never ask to re-live this past year but I'm thankful for it. It has done so much for me and my family. We are stronger, we appreciate each other more, we take less for granted, we have more compassion for others...and I'm thankful for all of that. Thank you all so much for keeping up with us and praying for our family this last year. We love you for it.
Love to all,
Brittany
Saturday, March 13, 2010
A Few New Pictures of the Boys
Below are a few pictures of our boys being silly. In the next couple of days we will try and post a video of Gaines attempting to crawl. Also, if you haven't logged on to our blog lately, there is a new post from Brittany below.
Friday, March 12, 2010
Good Excuse
I know its been awhile but I have a good excuse. Beau was out of town Sunday morning through Thursday afternoon so I've been a little occupied. My mom stayed with us and helped me with the boys for part of the time but it was still pretty busy around here. By the way...my mom is awesome. She's always willing to help us out anyway she can. Lots of people are actually but the list is too long...my mom just gets the credit right now because she just spent 3 nights with us.
Anyway...I was by myself Wednesday night with both boys and had a momentary lapse in judgement and decided to let the boys take a bath together. I figured...two birds with one stone. To say it was a disaster would be an understatement. We weren't 30 seconds in when Reed dumped a huge cup of water straight in Gaines' face. Of course Gaines screamed...and Reed got a spanking (he had just been told not to do it) so he screamed. Both of them were looking at me crying (Reed screaming "I want to get out!!!") and immediately I questioned my sanity for putting them both in the tub together. We made it through, but it wasn't pretty...and we won't be attemting that again for awhile. I told Beau later on the phone what I'd done and he said, "You did what?" Not my best idea.
Other than that things have pretty much just been rocking along. I had a cold last week which means Reed and Gaines had colds this week. We took Gaines in for a steroid shot/prescription yesterday just to get a head start on his cold. I think the key with him is just to not let the cold get ahead of you. He seems much better today thank goodness. We got the ok on Monday to discontinue Gaines' Lasix but I haven't done it yet. I want him to get over this cold first. I kind of feel like we'd be setting him up to fail if we did it right now. Please say a little prayer that he handles it.
In other news, our little Gaines is trying his best to start crawling. He gets on all fours and rocks back and forth. I even think he goes backwards a little bit. He has physical therapy again on Monday so please pray for another good report. He's really starting to be pretty fun...and he's definitely cute. He makes the funniest little faces. I tell him all the time that he's lucky he's so cute...especially when he's being a little "trying". Remember that fight that he had when he was born...fighting through all of is obstacles...yeah, he's still got it. Only now he fights taking his medicines, breathing treatments, leg stretches, etc. I'm trying to be thankful for it.
Reed has turned into quite the song bird lately. He was singing something about "way down yonder in the paw paw patch" in the tub the other night. I don't remember it but apparently its a classic. I must have been absent the day we learned that one because I don't believe I've ever heard it. He also sang our blessing tonight for us. Sweet boy.
I talked to Reed's teacher this week and asked how he was doing. She had all good things to say about him (obviously) and mentioned what a good eater he was. She went on to say, "he's messy...probably the messiest one, but he's a good eater". At least he's consistent...because he's pretty messy here too. Another teacher said this week that she wanted whatever I was feeding Reed because he just always had so much energy. I told her I thought that was just him being a little boy and she said, "Well, some boys are like that." Glad to know we ended up with one of the "active" ones. I wouldn't trade him for the world though. He has the sweetest spirit and is just always so joyful.
I guess that's about it for now. I haven't slept great the last few nights and it's my turn with Gaines tonight so wish me luck. I cannot tell you how badly I wish for a night of uninterrupted sleep.
Love to all,
Brittany
P.S. And how about some comments? What's the deal with the lack of comments these days?
Anyway...I was by myself Wednesday night with both boys and had a momentary lapse in judgement and decided to let the boys take a bath together. I figured...two birds with one stone. To say it was a disaster would be an understatement. We weren't 30 seconds in when Reed dumped a huge cup of water straight in Gaines' face. Of course Gaines screamed...and Reed got a spanking (he had just been told not to do it) so he screamed. Both of them were looking at me crying (Reed screaming "I want to get out!!!") and immediately I questioned my sanity for putting them both in the tub together. We made it through, but it wasn't pretty...and we won't be attemting that again for awhile. I told Beau later on the phone what I'd done and he said, "You did what?" Not my best idea.
Other than that things have pretty much just been rocking along. I had a cold last week which means Reed and Gaines had colds this week. We took Gaines in for a steroid shot/prescription yesterday just to get a head start on his cold. I think the key with him is just to not let the cold get ahead of you. He seems much better today thank goodness. We got the ok on Monday to discontinue Gaines' Lasix but I haven't done it yet. I want him to get over this cold first. I kind of feel like we'd be setting him up to fail if we did it right now. Please say a little prayer that he handles it.
In other news, our little Gaines is trying his best to start crawling. He gets on all fours and rocks back and forth. I even think he goes backwards a little bit. He has physical therapy again on Monday so please pray for another good report. He's really starting to be pretty fun...and he's definitely cute. He makes the funniest little faces. I tell him all the time that he's lucky he's so cute...especially when he's being a little "trying". Remember that fight that he had when he was born...fighting through all of is obstacles...yeah, he's still got it. Only now he fights taking his medicines, breathing treatments, leg stretches, etc. I'm trying to be thankful for it.
Reed has turned into quite the song bird lately. He was singing something about "way down yonder in the paw paw patch" in the tub the other night. I don't remember it but apparently its a classic. I must have been absent the day we learned that one because I don't believe I've ever heard it. He also sang our blessing tonight for us. Sweet boy.
I talked to Reed's teacher this week and asked how he was doing. She had all good things to say about him (obviously) and mentioned what a good eater he was. She went on to say, "he's messy...probably the messiest one, but he's a good eater". At least he's consistent...because he's pretty messy here too. Another teacher said this week that she wanted whatever I was feeding Reed because he just always had so much energy. I told her I thought that was just him being a little boy and she said, "Well, some boys are like that." Glad to know we ended up with one of the "active" ones. I wouldn't trade him for the world though. He has the sweetest spirit and is just always so joyful.
I guess that's about it for now. I haven't slept great the last few nights and it's my turn with Gaines tonight so wish me luck. I cannot tell you how badly I wish for a night of uninterrupted sleep.
Love to all,
Brittany
P.S. And how about some comments? What's the deal with the lack of comments these days?
Tuesday, March 2, 2010
Answered Prayers
We’ve had a pretty good week this past week. Reed and I took a little trip to Andalusia over the weekend and I think we both gained about 12 pounds each. I’m sorry but my grandmother is one of the best cooks around. Not only does she cook delicious food but she cooks a LOT of it. We had a good time down there. Reed got to “drive” a few tractors which he loved. He’s the center of attention whenever he visits and he eats it up. Plus my sister was down there and that made it even better for him. I love being down there…it just makes me so thankful for my family. I can’t wait to be able to take Gaines.
Gaines by the way has been doing awesome on ¾ of a liter and we actually noticed last night that he somehow had gotten bumped down to a half liter. And wouldn’t you know that little joker was handling it fine! Beau was fiddling with the concentrator (turns room air into oxygen) and noticed that Gaines was only getting a half liter of oxygen. Now, a few weeks ago I wouldn’t have put it past myself to “accidentally” turn him down and ask the doctor if it was ok after the fact, but we really and truly have no idea how that happened, or how long its been like that. Now that we are actually in the process of weaning I’m a lot more patient with the process so I’m fine with going slow. We debated about whether or not to leave him alone or to put him back to ¾ and finally decided to go back to ¾. Only because we reduced his Lasix yesterday too and we didn’t want to push too much on him too fast. The good news is, when the time comes to cut his oxygen to a half liter, we are pretty confident that he’ll be able to handle it. And you can be sure that next Monday, once we are sure he’s handling the cut in Lasix, I’ll be on the phone with the doctor asking for the next step. How exciting for Gaines!
In other positive Gaines news, he had physical therapy yesterday and got what I think was a great report. His therapist was very pleased with the progress in his sitting and gave us some tips on helping him learn to crawl. She felt like he’d be crawling in the next month or two. We think it could be sooner than that. You can see it in his little eyes that he’s trying to figure out how to get his legs under him. Also, she was very pleased with the improvement in his legs and gave them an 8.5. Not quite the 9 I was hoping for but definite improvement. She told me that she “definitely saw walking in his future”. I was so glad to hear that! She said that at this point she couldn’t promise that it would be without a limp or something but until now we haven’t had a vote of confidence like that in the walking department.
Now, she felt like he wouldn’t be walking until September at the earliest and said that it could be next spring but that it would happen. She based that on the fact that she thinks he’s about 2 months behind his corrected age (which is 8 months…so she thinks he’s about a 6 month old right now…and p.s., according to my figuring that’s a little conservative…I’d put him at about 7 months but that’s just me) and that on average kids walk around one year (some earlier, some later) so that would mean 2 months after his due date of July 7 which is September. Now, the reason that I’m ok with that is this. They base preemies’ adjusted age on their due date which is about the time most preemies leave the NICU (their due date)…Gaines didn’t leave the NICU until 2 months after his due date. I just really don’t think that’s a coincidence. While the nurses held him and loved on him as much as they could (as did we on our visits), it’s just not the same stimulation, etc that he would have gotten if he’d been at home in July. Plus he’s progressing at a consistent rate so I’m happy with it.
AND…then there was this part. The therapist was showing us some new moves to do with Gaines to help with his balance when standing. She was explaining that when you lean him forward he should get on his tip toes to balance and that when you lean him back wards, he should flex or lift his toes off the floor. When she saw him do the toe flex business she was really excited for him and said that seeing that, she could give me even more confidence on the walking. She said that it showed his front calf/shin muscle (whatever it’s called) was working. She said that muscle was very hard to stimulate and that the kids who couldn’t really use theirs were the kids you see in leg braces…and Gaines can use his!
If you don’t believe that all of this is God answering prayers…then I don’t know what…I’ll have to call you crazy. I mean, Gaines should not be here and here he is weaning oxygen and medicines like a champ and making steady progress on his development. Every night I pray that God will make Gaines an example of His faithfulness, mercy and compassion and that people will see a complete miracle from Him in Gaines. I pray that Gaines will grow up to be as smart, active and verbal as his big brother. Getting these good reports just fills my heart with joy. Please keep him in your prayers as we continue down this road.
Love to all,
Brittany
Gaines by the way has been doing awesome on ¾ of a liter and we actually noticed last night that he somehow had gotten bumped down to a half liter. And wouldn’t you know that little joker was handling it fine! Beau was fiddling with the concentrator (turns room air into oxygen) and noticed that Gaines was only getting a half liter of oxygen. Now, a few weeks ago I wouldn’t have put it past myself to “accidentally” turn him down and ask the doctor if it was ok after the fact, but we really and truly have no idea how that happened, or how long its been like that. Now that we are actually in the process of weaning I’m a lot more patient with the process so I’m fine with going slow. We debated about whether or not to leave him alone or to put him back to ¾ and finally decided to go back to ¾. Only because we reduced his Lasix yesterday too and we didn’t want to push too much on him too fast. The good news is, when the time comes to cut his oxygen to a half liter, we are pretty confident that he’ll be able to handle it. And you can be sure that next Monday, once we are sure he’s handling the cut in Lasix, I’ll be on the phone with the doctor asking for the next step. How exciting for Gaines!
In other positive Gaines news, he had physical therapy yesterday and got what I think was a great report. His therapist was very pleased with the progress in his sitting and gave us some tips on helping him learn to crawl. She felt like he’d be crawling in the next month or two. We think it could be sooner than that. You can see it in his little eyes that he’s trying to figure out how to get his legs under him. Also, she was very pleased with the improvement in his legs and gave them an 8.5. Not quite the 9 I was hoping for but definite improvement. She told me that she “definitely saw walking in his future”. I was so glad to hear that! She said that at this point she couldn’t promise that it would be without a limp or something but until now we haven’t had a vote of confidence like that in the walking department.
Now, she felt like he wouldn’t be walking until September at the earliest and said that it could be next spring but that it would happen. She based that on the fact that she thinks he’s about 2 months behind his corrected age (which is 8 months…so she thinks he’s about a 6 month old right now…and p.s., according to my figuring that’s a little conservative…I’d put him at about 7 months but that’s just me) and that on average kids walk around one year (some earlier, some later) so that would mean 2 months after his due date of July 7 which is September. Now, the reason that I’m ok with that is this. They base preemies’ adjusted age on their due date which is about the time most preemies leave the NICU (their due date)…Gaines didn’t leave the NICU until 2 months after his due date. I just really don’t think that’s a coincidence. While the nurses held him and loved on him as much as they could (as did we on our visits), it’s just not the same stimulation, etc that he would have gotten if he’d been at home in July. Plus he’s progressing at a consistent rate so I’m happy with it.
AND…then there was this part. The therapist was showing us some new moves to do with Gaines to help with his balance when standing. She was explaining that when you lean him forward he should get on his tip toes to balance and that when you lean him back wards, he should flex or lift his toes off the floor. When she saw him do the toe flex business she was really excited for him and said that seeing that, she could give me even more confidence on the walking. She said that it showed his front calf/shin muscle (whatever it’s called) was working. She said that muscle was very hard to stimulate and that the kids who couldn’t really use theirs were the kids you see in leg braces…and Gaines can use his!
If you don’t believe that all of this is God answering prayers…then I don’t know what…I’ll have to call you crazy. I mean, Gaines should not be here and here he is weaning oxygen and medicines like a champ and making steady progress on his development. Every night I pray that God will make Gaines an example of His faithfulness, mercy and compassion and that people will see a complete miracle from Him in Gaines. I pray that Gaines will grow up to be as smart, active and verbal as his big brother. Getting these good reports just fills my heart with joy. Please keep him in your prayers as we continue down this road.
Love to all,
Brittany
Tuesday, February 23, 2010
3/4 Liter
Gaines blood work came back yesterday and looked good so his doctor had us turn his oxygen down to 3/4 a liter. I was so nervous because I knew I'd be devastated if he couldn't handle it but he did awesome! His sats were 97-99 last night while he was asleep. Please pray that this "takes" and that he doesn't get tired and have to go back up. Also, if he's still doing well next Monday we'll cut his Lasix back to .25 ml. If that goes well I'm supposed to call them back in two weeks and we might make another cut before we go back for clinic at the end of March. I am cautiously optimistic about all this. Afraid to get my hopes up too high but so excited that this first step seems to be going well. Please keep Gaines in your prayers. Wouldn't it be awesome to have a cordless baby by summer?
Love to all,
Brittany
Love to all,
Brittany
Wednesday, February 17, 2010
Physical Therapy
Hello all. Gaines had a PT appointment Monday so I thought I'd update you on that and ask for a few specific prayers. Oh, and, PS...a huge thank you to all of you out there that still pray for our family and little Gaines. He is doing great and we are managing to stay fairly sane but there are days when we need lots of prayers...ok, maybe I'm the only one that needs them. You know I'm working on my patience (and doing fairly well if I do say so myself) but there are still days when I get overwhelmed...trying to be all things to all people. My guess is that a lot of you have days like that, I just had one today. When did life get so hectic?
Anyway...enough of that...back to Gaines. His therapist thought that he had a really good appointment. She loves how much time he's spending on his belly and was impressed with his arm strength. She got some new exercises to be working on. One that puts him in a crawling position (he does not love it) and one is just standing at the couch with flat feet and un-bent legs (he didn't seem to love that either this afternoon). When she tried it with him he wanted to be on his toes with bent knees. With some help he'd straighten out with out really fighting her, but that was still his go to position. We want to correct that.
I asked her how she thought his hamstrings were doing and she thought they were the best they've ever been. A good answer but I wanted specifics. I asked what she thought they were on a scale of 1-10, 10 being the best. She said probably a 7-8. Good, but not what she wanted yet. She said he probably started as a 5. That means he has definitely made progress but is not quite there yet. So, one of my specific prayer requests is for Gaines to be a good solid 9 by his next appointment. I know that with our prayers, God can make him a 10 (and he will eventually) but I'm trying not to be greedy. I just want a 9 for now. I'm really trying to do everything I can to get him there. I've increased his stretching and massage and using heat to warm his muscles when stretching. Gaines is not quite so crazy about my new determination but he'll thank me one day. I'll keep you updated.
My other prayer request these next two weeks is for Gaines to finally master this sitting up business. He is so close but according to his therapist, his back muscles are still a little weak. He sits up, he just doesn't sit up as straight as we'd like. Please keep that in your prayers as well. As I see it, Gaines has 4 big milestones left before I can breath a sigh of relief (if that's even a reality with children!)...sitting, crawling, walking and talking. I'd love to get that list down to 3 very soon. He has a big exercise ball that we use to strengthen his core. It's pretty tough to use but I'm starting to get the hang of it. Please pray that my determination continues. I love hearing from all of you out there have have dealt with these same frustrations. They remind me that I'm not alone in having to do this stuff. Some days I just want to crash on the couch but I know that Gaines needs me to do these exercises with him. Hearing your success stories or tips helps keep my head where it should be.
I really hope you all don't mind hearing my inner thoughts...I don't hold much back on here. I know I come across as complaining and probably ungrateful sometimes...I promise I'm not, I just try to be honest. Being a mom is hard sometimes!
Back to my boys...In other Gaines related news, he said Dada today. Not just Da...a full Dada. His poor Mama will probably have to wait a while to hear her name. I swear it took Reed forever to say "Mama".
Also, I haven't mentioned it in a while but Reed is pretty much potty trained. He only wears diapers at night. Every so often...like less than once a week, he'll have an accident but he has really done great with potty training. Honestly I feel like it's even less than that. Sorry...just had to brag on my big boy for a minute.
This is kind of funny...Beau just put Reed to bed and they said his prayers. They went through the list of thank you for mama, daddy, Gaines, Jack...Amen. Then Reed said, "What about my horse?" (his rocking horse that was the ONLY thing he told us Santa was going to bring him but that he never plays with), so Beau said, "And thank you for Reed's horse".
Reed: "What about my bike?"
Beau: "And thank you for Reed's bike."
Reed: "What about my scooter?"
Beau: "And thank you for Reed's scooter".
Then Reed got a big smile on his face and rolled over to go to sleep. His priorities might be a little skewed but at least he's thankful for his "bessings".
I'm out for now. I've got a boy out of bed that needs a talking to.
Thanks for keeping up with us. I mean it.
Pictures below if you haven't checked in in a few days.
Love to all,
Brittany
Anyway...enough of that...back to Gaines. His therapist thought that he had a really good appointment. She loves how much time he's spending on his belly and was impressed with his arm strength. She got some new exercises to be working on. One that puts him in a crawling position (he does not love it) and one is just standing at the couch with flat feet and un-bent legs (he didn't seem to love that either this afternoon). When she tried it with him he wanted to be on his toes with bent knees. With some help he'd straighten out with out really fighting her, but that was still his go to position. We want to correct that.
I asked her how she thought his hamstrings were doing and she thought they were the best they've ever been. A good answer but I wanted specifics. I asked what she thought they were on a scale of 1-10, 10 being the best. She said probably a 7-8. Good, but not what she wanted yet. She said he probably started as a 5. That means he has definitely made progress but is not quite there yet. So, one of my specific prayer requests is for Gaines to be a good solid 9 by his next appointment. I know that with our prayers, God can make him a 10 (and he will eventually) but I'm trying not to be greedy. I just want a 9 for now. I'm really trying to do everything I can to get him there. I've increased his stretching and massage and using heat to warm his muscles when stretching. Gaines is not quite so crazy about my new determination but he'll thank me one day. I'll keep you updated.
My other prayer request these next two weeks is for Gaines to finally master this sitting up business. He is so close but according to his therapist, his back muscles are still a little weak. He sits up, he just doesn't sit up as straight as we'd like. Please keep that in your prayers as well. As I see it, Gaines has 4 big milestones left before I can breath a sigh of relief (if that's even a reality with children!)...sitting, crawling, walking and talking. I'd love to get that list down to 3 very soon. He has a big exercise ball that we use to strengthen his core. It's pretty tough to use but I'm starting to get the hang of it. Please pray that my determination continues. I love hearing from all of you out there have have dealt with these same frustrations. They remind me that I'm not alone in having to do this stuff. Some days I just want to crash on the couch but I know that Gaines needs me to do these exercises with him. Hearing your success stories or tips helps keep my head where it should be.
I really hope you all don't mind hearing my inner thoughts...I don't hold much back on here. I know I come across as complaining and probably ungrateful sometimes...I promise I'm not, I just try to be honest. Being a mom is hard sometimes!
Back to my boys...In other Gaines related news, he said Dada today. Not just Da...a full Dada. His poor Mama will probably have to wait a while to hear her name. I swear it took Reed forever to say "Mama".
Also, I haven't mentioned it in a while but Reed is pretty much potty trained. He only wears diapers at night. Every so often...like less than once a week, he'll have an accident but he has really done great with potty training. Honestly I feel like it's even less than that. Sorry...just had to brag on my big boy for a minute.
This is kind of funny...Beau just put Reed to bed and they said his prayers. They went through the list of thank you for mama, daddy, Gaines, Jack...Amen. Then Reed said, "What about my horse?" (his rocking horse that was the ONLY thing he told us Santa was going to bring him but that he never plays with), so Beau said, "And thank you for Reed's horse".
Reed: "What about my bike?"
Beau: "And thank you for Reed's bike."
Reed: "What about my scooter?"
Beau: "And thank you for Reed's scooter".
Then Reed got a big smile on his face and rolled over to go to sleep. His priorities might be a little skewed but at least he's thankful for his "bessings".
I'm out for now. I've got a boy out of bed that needs a talking to.
Thanks for keeping up with us. I mean it.
Pictures below if you haven't checked in in a few days.
Love to all,
Brittany
Sunday, February 14, 2010
New Pictures
We took the boys outside today for a very short walk. The weather was okay and the fresh air has to be good for Gaines. Here are a few pictures from the walk.
Wednesday, February 10, 2010
Randomness
I don't have too much too much to report tonight. Both boys are doing really well...Reed has been recovered and Gaines is almost totally clear. Thank goodness. Friday we'll go to have some blood work done and will find out what the plan is as far as weaning medicines and oxygen. Gaines' RSV kind of put a kink in the original plan.
We are all hanging out watching Charlie Brown Valentine tonight. Reed doesn't understand the commercials. Every night we let him watch Backyardigans from 7-7:30 to sort of wind down before bed and there are no commercials on Nick Jr. So, we get lots of whining every time it goes to commercial. We'll have to work on patience with him...poor boy...he get's it honest.
Let's see what else...I think Gaines may be teething. We cannot keep his hands or oxygen cord out of his mouth. Oh, I think he's saying "Da" now. We've been getting "Boo" for a little while but now we've moved to another consonant. That's a good sign for his verbal and cognitive development. All these therapists have warped my mind. They ask all these questions and now I overanalyze every little thing. They'll ask something I've never thought about so then I start watching him like a hawk looking for whatever it is they've asked about. In this case, is he babbling consonants or vowels?
Reed is so funny these days (do I say that in every post?). He asked me the other day if I wanted to get my face painted at the circus (like he just did a few weeks ago). Also, he must be picking up on Valentines Day because last Sunday we were eating lunch and he said, "Mama, what about Val-tines Day?" I didn't know what all he was asking about but I told him a few things and that maybe I would make pancakes for breakfast on Valentines Day. He said, "Oh, I yove pancakes".
Another day I told him that a shirt he wanted to wear that had a stain on it would have to be a Saturday shirt. He said, "Oh, I yove Saturdays".
One last Reed story...this one is really sweet. One day I said, "I love you Reed" and he said "I yove you Mama." We went back and forth a few times (me loving every minute of it) and finally I said, "I love you the most". He said, "the most?" like he didn't know what that meant so I explained it. Now when I say, "I love you Reed" he says, "I yove you most". I love it.
I guess that's about it for tonight. I told you I didn't have much.
Love to all,
Brittany
P.S. During the typing of this post I've learned that deviation from the usual routine of Backyardigans is not the best idea. We had a major meltdown after Charlie Brown. Not worth it.
We are all hanging out watching Charlie Brown Valentine tonight. Reed doesn't understand the commercials. Every night we let him watch Backyardigans from 7-7:30 to sort of wind down before bed and there are no commercials on Nick Jr. So, we get lots of whining every time it goes to commercial. We'll have to work on patience with him...poor boy...he get's it honest.
Let's see what else...I think Gaines may be teething. We cannot keep his hands or oxygen cord out of his mouth. Oh, I think he's saying "Da" now. We've been getting "Boo" for a little while but now we've moved to another consonant. That's a good sign for his verbal and cognitive development. All these therapists have warped my mind. They ask all these questions and now I overanalyze every little thing. They'll ask something I've never thought about so then I start watching him like a hawk looking for whatever it is they've asked about. In this case, is he babbling consonants or vowels?
Reed is so funny these days (do I say that in every post?). He asked me the other day if I wanted to get my face painted at the circus (like he just did a few weeks ago). Also, he must be picking up on Valentines Day because last Sunday we were eating lunch and he said, "Mama, what about Val-tines Day?" I didn't know what all he was asking about but I told him a few things and that maybe I would make pancakes for breakfast on Valentines Day. He said, "Oh, I yove pancakes".
Another day I told him that a shirt he wanted to wear that had a stain on it would have to be a Saturday shirt. He said, "Oh, I yove Saturdays".
One last Reed story...this one is really sweet. One day I said, "I love you Reed" and he said "I yove you Mama." We went back and forth a few times (me loving every minute of it) and finally I said, "I love you the most". He said, "the most?" like he didn't know what that meant so I explained it. Now when I say, "I love you Reed" he says, "I yove you most". I love it.
I guess that's about it for tonight. I told you I didn't have much.
Love to all,
Brittany
P.S. During the typing of this post I've learned that deviation from the usual routine of Backyardigans is not the best idea. We had a major meltdown after Charlie Brown. Not worth it.
Thursday, February 4, 2010
The Miracles in Everyday Life
Brittany's last update on the boys was Tuesday night. We were fighting RSV, 4 infected ears and 2 infected eyes. We went to sleep Tuesday night prepared for the worst. The plan was for me to wake up at midnight to give Gaines a breathing treatment and for Brittany to wake up at 4 AM for another breathing treatment. We were also prepared to wake up to find Reed with his eyes matted shut.
Well, we both woke up at our designated times for the breathing treatments and were pleasantly surprised when Gaines slept through the night with very little coughing. Wednesday morning I immediately went to Reed's room so he wouldn't be scared when he couldn't open his eyes. I was shocked to find his eyes to be normal. I kept looking at him and asking to see his eyes...I was sure I was somehow missing something. I even asked him if his eyes hurt and he very quickly responded "No, they're feeling better".
Long story short...both boys are on the road to recovery. Reed acts as if he is fully recovered and Gaines is getting there. It will take Gaines a little while to get over the RSV but I think he is holding his own right now. It was amazing to go to bed Tuesday night fearing eye infections for one child and a possible hospital stay for the other...only to wake up Wednesday morning and for Reed to be well and Gaines to be much better. Sometimes the miracles in everyday life go unnoticed.
By the way, for those of you who like irony:
This journey started last March when Brittany went to Washington, DC on a 4 day business trip. I just found out that I will be leaving in March on a 5 day business trip to...Washington, DC. Weird.
Well, we both woke up at our designated times for the breathing treatments and were pleasantly surprised when Gaines slept through the night with very little coughing. Wednesday morning I immediately went to Reed's room so he wouldn't be scared when he couldn't open his eyes. I was shocked to find his eyes to be normal. I kept looking at him and asking to see his eyes...I was sure I was somehow missing something. I even asked him if his eyes hurt and he very quickly responded "No, they're feeling better".
Long story short...both boys are on the road to recovery. Reed acts as if he is fully recovered and Gaines is getting there. It will take Gaines a little while to get over the RSV but I think he is holding his own right now. It was amazing to go to bed Tuesday night fearing eye infections for one child and a possible hospital stay for the other...only to wake up Wednesday morning and for Reed to be well and Gaines to be much better. Sometimes the miracles in everyday life go unnoticed.
By the way, for those of you who like irony:
This journey started last March when Brittany went to Washington, DC on a 4 day business trip. I just found out that I will be leaving in March on a 5 day business trip to...Washington, DC. Weird.
Tuesday, February 2, 2010
Four Infected Ears, Two Infected Eyes and a Case of RSV
First of all, let me just tell you that the four warm chocolate chip cookies (with milk!) that I'm eating right now are delicious and well deserved. It has been one heck of a day. I'll start from the beginning.
When I woke up this morning I thought Gaines was almost fully recovered from his cold. He slept all night without coughing and when he woke up for his usual 4:00-4:45 (A.M!) play time (he likes to wake up around 4, play for a little while and go back to sleep until 6...I love him but it is a touch annoying) he was just awake and playing...no coughing which had become pretty standard the last week. When I left for work he was playing on his mat and I was not worried about him at all. He still had the occasional coughing fit but they were fewer and fewer each day.
Fast forward to 11:30. I'm working away getting ready for lunch and my phone rings. It's Reed's daycare. Deep breath before I answer. They think he may have pink eye and I need to come pick him up. Awesome.
I quickly call Beau since he is at the doctor's office with Gaines for Gaines' 9 month check-up and monthly synagis (RSV vaccination) shot. He calls me back on my way to get Reed and tells me to bring him on, the doctor can squeeze him in too. We hurry to the doctor and find the exam room. The scene is not what I expect. Everyone seems kind of worried about Gaines and Gaines does not look like he did when I left him. Beau tells me that as they were getting in the car he started a coughing fit and his sats dropped and he was obviously not feeling well at all. Beau even turned his oxygen up some.
Long story short, both of Gaines' ears are infected (even though he's on antibiotics) and he has RSV. (Yes, even though he's been being vaccinated for it the last 5 months and despite the fact that he comes into contact with very few humans). The doctor thought he should be admitted to the hospital and was trying to decide if Gaines should go to Children's in Birmingham or if he could just stay here. He called and talked to the pulmonologist in Birmingham and somewhere in that conversation they decided he could be treated at home. He responded well to an albuterol treatment and had come back down to a liter of oxygen with good sats so they both felt pretty good about it. He got a steroid shot in addition to the oral ones he's been taking for a week. We have been giving him breathing treatments every two hours this afternoon and will be going to every four after the 8 p.m. one. That means we'll be waking up at midnight and 4 a.m. but at least we are avoiding the hospital for now.
He seems great right now. That's the thing. He'll seem totally fine rolling around and really playing but then he starts coughing and it takes him a few minutes to get over it. It obviously hurts him to cough and his face turns red and he gags and it's just bad. You feel so sorry for him. Anyway, right now he seems to be doing well so please pray that he gets over this without a hospital visit. He goes back to the doctor tomorrow for a check-up. Pray that it goes well.
Someone asked the other day what all medicines Gaines was on so here is the current list. Keep in mind that the antibiotic and steroid are only temporary. Here goes. Lasix, Diuril, Aldactone (all diuretics to keep him from retaining fluid), Baclofen, Prevacid (both for reflux), Vitamin D, Sodium Chloride (both supplements because of all the diuretics), Orapred (steroid), Augmenten (antibiotic), Albuterol via nebulizer (usually just twice daily), IP Bromide via nebulizer and Flovent. I can't decide if CVS loves us or hates us. Either way they definitely know us.
As for Reed, he does not have pink eye. He has two infected ears that apparently can cause eye infections. I've never heard of this happening until today but it seems that it can. He's not contagious so as long as his eyes aren't all matted shut tomorrow he can go back to school. I'm just not sure they aren't going to be all gross tomorrow. His eyes did not look good when he went to bed and are both of them are looking goopy now. Hasn't slowed him down though.
Actually, I was at CVS with him this afternoon picking up his medicine and ran into a lady that works at my company. I don't know her well but well enough to speak. She asked if Reed was mine and I looked at him with his crazy hair from his nap, crusty nose and swollen and running eye (let's just say he was not looking his best) and said, "Yes, but he's normally cuter than this". Does that make me a bad mother? Oh well if it does.
I washed my hands like crazy before I took my contacts out but I still cringed as I did it. Reed isn't contagious but it still grossed me out touching my eyes right after I wiped nasty goop out of his.
I guess that's about it for now. I've got the 4 o'clock shift so I'm headed to bed. Please keep my little patients in your prayers.
Love to all,
Brittany
When I woke up this morning I thought Gaines was almost fully recovered from his cold. He slept all night without coughing and when he woke up for his usual 4:00-4:45 (A.M!) play time (he likes to wake up around 4, play for a little while and go back to sleep until 6...I love him but it is a touch annoying) he was just awake and playing...no coughing which had become pretty standard the last week. When I left for work he was playing on his mat and I was not worried about him at all. He still had the occasional coughing fit but they were fewer and fewer each day.
Fast forward to 11:30. I'm working away getting ready for lunch and my phone rings. It's Reed's daycare. Deep breath before I answer. They think he may have pink eye and I need to come pick him up. Awesome.
I quickly call Beau since he is at the doctor's office with Gaines for Gaines' 9 month check-up and monthly synagis (RSV vaccination) shot. He calls me back on my way to get Reed and tells me to bring him on, the doctor can squeeze him in too. We hurry to the doctor and find the exam room. The scene is not what I expect. Everyone seems kind of worried about Gaines and Gaines does not look like he did when I left him. Beau tells me that as they were getting in the car he started a coughing fit and his sats dropped and he was obviously not feeling well at all. Beau even turned his oxygen up some.
Long story short, both of Gaines' ears are infected (even though he's on antibiotics) and he has RSV. (Yes, even though he's been being vaccinated for it the last 5 months and despite the fact that he comes into contact with very few humans). The doctor thought he should be admitted to the hospital and was trying to decide if Gaines should go to Children's in Birmingham or if he could just stay here. He called and talked to the pulmonologist in Birmingham and somewhere in that conversation they decided he could be treated at home. He responded well to an albuterol treatment and had come back down to a liter of oxygen with good sats so they both felt pretty good about it. He got a steroid shot in addition to the oral ones he's been taking for a week. We have been giving him breathing treatments every two hours this afternoon and will be going to every four after the 8 p.m. one. That means we'll be waking up at midnight and 4 a.m. but at least we are avoiding the hospital for now.
He seems great right now. That's the thing. He'll seem totally fine rolling around and really playing but then he starts coughing and it takes him a few minutes to get over it. It obviously hurts him to cough and his face turns red and he gags and it's just bad. You feel so sorry for him. Anyway, right now he seems to be doing well so please pray that he gets over this without a hospital visit. He goes back to the doctor tomorrow for a check-up. Pray that it goes well.
Someone asked the other day what all medicines Gaines was on so here is the current list. Keep in mind that the antibiotic and steroid are only temporary. Here goes. Lasix, Diuril, Aldactone (all diuretics to keep him from retaining fluid), Baclofen, Prevacid (both for reflux), Vitamin D, Sodium Chloride (both supplements because of all the diuretics), Orapred (steroid), Augmenten (antibiotic), Albuterol via nebulizer (usually just twice daily), IP Bromide via nebulizer and Flovent. I can't decide if CVS loves us or hates us. Either way they definitely know us.
As for Reed, he does not have pink eye. He has two infected ears that apparently can cause eye infections. I've never heard of this happening until today but it seems that it can. He's not contagious so as long as his eyes aren't all matted shut tomorrow he can go back to school. I'm just not sure they aren't going to be all gross tomorrow. His eyes did not look good when he went to bed and are both of them are looking goopy now. Hasn't slowed him down though.
Actually, I was at CVS with him this afternoon picking up his medicine and ran into a lady that works at my company. I don't know her well but well enough to speak. She asked if Reed was mine and I looked at him with his crazy hair from his nap, crusty nose and swollen and running eye (let's just say he was not looking his best) and said, "Yes, but he's normally cuter than this". Does that make me a bad mother? Oh well if it does.
I washed my hands like crazy before I took my contacts out but I still cringed as I did it. Reed isn't contagious but it still grossed me out touching my eyes right after I wiped nasty goop out of his.
I guess that's about it for now. I've got the 4 o'clock shift so I'm headed to bed. Please keep my little patients in your prayers.
Love to all,
Brittany
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
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.
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
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.
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
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
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
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