Saturday, May 29, 2010
Sorry for the lack of posting this week but its been a busy week. I gave myself Tuesday off because I had such a blah day on Monday. I seriously did nothing. Wednesday I straightened up and made a cake for the next day's company. Thursday we had some friends in town that spent the night with us. I served them a fabulous dinner of Pizza Hut but I did at least make a cake. Friday we planned to go to an outdoor symphony picnic event in town but it was thundering shortly before we planned to leave so we decided to just have our friends that we had planned to go with come over (and I know that is a crazy run on sentence). Its been a busy week but a good one.
Sorry...I got off track. I started that to tell you about the changes in the latest Gaines plan. I called Thursday to schedule Gaines' hernia surgery because, go figure, the urologist office hadn't called me like they were supposed to. The surgery is scheduled for September 13 but will probably be rescheduled if Gaines is not completely off oxygen by then. The urologist's nurse told me that anesthesia will not let them do an unnecessary surgery to a child on oxygen. Which, for those of you who cannot remember...IS EXACTLY WHAT I WAS SAYING.
Anyway, I called to let the pulmonologist know of this new development and find out what we can do to move forward with the oxygen/meds weaning. The new plan for that is to cut back on his diuretics from twice a day to once a day for two weeks. If that goes well, we'll cut them out all together. After two weeks of no diuretics, we can cut the oxygen to a quarter of a liter. That's as far as I've got right now but...the only thing to do after all of that, is to start with trials off oxygen. Please pray that this all goes well.
Also just a quick note because I know I sound a little jaded over all the doctor visits. I honestly, 100% appreciate each and every doctor and nurse that we see but I am just SO tired of the medical community as a whole. I mean every doctor tells you something different and you don't know who to listen to and doctors SPEAK TO EACH OTHER ON THE PHONE and then you go to schedule the surgery they discussed and...nope there was a miscommunication. And do not even get me started on billing and insurance issues. Do you know how many bills I would have paid that insurance covers if I hadn't been paying attention...or just given up on the negotiations between the insurance company and the billing department...because the two will not talk to each other. You have to be the mediator. Sorry for that rant...I'm just burned out on it all but certainly willing to do it. Have I mentioned how awesome Gaines is doing lately? He really is.
Man I'm using a lot of words tonight.
A quick note about Reed. He scraped his toe tonight and there was a little blood so we put a band aid on it for him. He immediately developed a limp.
Also...tonight he was in the tub and I heard him singing: "He drank up all the water, he ate up all the soap"...Who knows it?
Eener meener! Beau didn't know it and I couldn't remember much more of it so I had to look it up. Its been in my head all night.
I woke up Sunday morning
I looked up on the wall
The skeeters and the bed bugs
Were playing a game of ball
I'll let y'all look up the rest of the lyrics if you care.
One last thing. I had to take Reed to the doctor Friday...because we hadn't been in a week and we couldn't let a week get by without a trip to the doctor...but we learned that Reed had two ear infections. Awesome. Anyway, he and I were in the waiting room and we were looking at the letters of the word "pancake" that was on some kids' magazine. I was going over the letters of the word with him and got to the second A and asked him what it was...thinking that seeing the first A might trigger the correct response. He thought about it for a second and said, "Ummmm...Monday?" I guess we need to work on letters.
Alright...y'all have a good holiday weekend. Sorry for the most random post ever.
Love to all,
Monday, May 24, 2010
Beau took Gaines to his appointment today. With the hospital visit last week and some things we have coming up this summer, I just couldn't take off work again. Anyway, he called me pretty soon after they got to go back and let me know that not only had Gaines not gained any weight, he'd actually lost an ounce or two. Awesome. It was a let down to say the least. I knew he hadn't done great...but I didn't think he'd lost weight. And I know he's been sick and that's probably part of it but still...two months of no gain isn't great.
Luckily the doctor doesn't seem terribly concerned about it right now. Says he's probably just hit a plateau. The plan for that is to switch him from formula to Pediasure. Hopefully the extra calories will help. I've also got a side plan to get him to eat one sugar cookie a day. I think one Otis Spunkmeyer sugar cookie has 180 calories. That's kind of a half joke at the moment but I'm considering it. That would be huge for Gaines.
In other news...
We were hoping to lose diuretics today and that didn't happen. He didn't outgrow them.
We were hoping to get permission to cut oxygen and that didn't happen either. They don't want to push him too much before his surgery. Yep, I said surgery.
The hernia surgery that has been in the back of our minds for a while now but that I hadn't quite processed yet? Remember that one? I loved getting told today that my child was having surgery and I wasn't around to help make that decision. Felt like mother of the year over that one. Its not scheduled yet but it should be in the next 30 days. From what I understand its a minor procedure but before it happens, I will know every detail about what it all entails. For now, I'm still processing. For some reason, I was expecting this next summer...like when Gaines was off oxygen.
At least we are supposed to come up with a diuretic/oxygen plan a week or so after the surgery. Ughh...not excited about surgery.
So you see, it wasn't a bad report, but I was hoping for a great report and when nothing I'd hoped for happened...and I had a surgery sprung on me, tears at work ensued...and if I'm totally honest...five chocolate chip cookies with milk are currently being consumed...instead of the run that I had planned.
Prayers for weight gain and prayers for surgery would be much appreciated.
One last Reed thing. I was just sitting here typing this blog when I noticed that Reed was out of his bed. I told him to go back to bed and he told me he wanted to read his Bible. It was like he knew the one thing he could say without getting in trouble. He was sent back to bed to read it in the dark.
Love to all,
P.S. Word to the wise...5 cookies is too many but it didn't stop me from shoving the last one down my throat. Now I feel gross. Great.
P.P.S. I'm not in some deep depression...just indulging myself in a blah day.
P.P.P.S. Someone get the cookies out of my house.
Sunday, May 23, 2010
Like I said, he's doing better with the eating. He's still not consuming huge amounts but he's eating some without fighting and actually feeding himself some things. I learned today that he likes sugar cookies. Go figure. You can break a few small pieces off and he'll use his little pincher grasp (milestone...check) to eat them. No gagging at all. Makes me think he's been playing us this whole time.
Reed has been fun all weekend. Beau took him to a ballpark Saturday morning and he can't wait to go back. He just asked me as I kissed him goodnight if we could go to the ballgame tomorrow. Sweet boy.
Oh...one last quick thing. Reed and Beau went to church this morning. On the way, Reed said, "Daddy, you going to see Jesus soon". Say a little prayer for Beau. We'd like to keep him around for a little longer.
Ok...I know this post is a dud. Sorry.
Love to all,
Wednesday, May 19, 2010
He really is a pretty happy boy...when he's getting his way. He screams like a girl when he's not. Seriously, this high pitched squeal. I wish you all could see him at home. He's a little thing but he gets wherever he wants and is always following someone around. He followed Reed and me somewhere this afternoon and I asked Reed what we were going to do with Gaines. I said, "Do you want us to keep him or do you want us to move him out?" Reed said, "Move out". Actually, he has been sweeter to his little brother lately. Reed hugs and kisses him before bed. You should see the giant smile on Gaines' face. He loves his big brother.
Also, we'll never have to discipline Gaines because Reed handles that for us. "No Gaines...don't touch that". "No Gaines, that mine."
On a seperate note, the video below is Reed in the bath last night. They have a "Watermelon Idol" (watermelon is his class right now) in his class where they each get to sing their favorite song into a microphone. Apparently, they get called to "Come on down" when its their turn.
I guess that's about it. Just a note on the questions about Gaines' breathing treatments. Right now he's taking albuterol treatments via nebulizer because our doctor thinks they are more effective. We'll stop those soon and are only doing them again because of the pneumonia. He takes flovent via the "puffer" with a chamber everyday.
I think its going to be an early night for me tonight.
Love to all,
Monday, May 17, 2010
Sunday, May 16, 2010
Friday, May 14, 2010
We took him to the doctor yesterday because his sats had been a little low, not because he seemed overly sick. Its crazy, I've taken him to the doctor before and been sure they were going to put him in the hospital. I would have never guessed that he had pneumonia. I think because we can watch his sat levels, we caught it early. A person not on a monitor would have probably waited until they started feeling bad before they went to the doctor but we were able to see on the monitor that Gaines' body wasn't doing what it should have been, before he started feeling really bad.
He's been on IV antibiotics and steroids along with lots of albuterol so he's been bouncing off the walls today. Totally pleasant and sweet...just wired. The good news is that he's asleep right now, back down to a half liter (he'd been up to one) with great sats. Please pray that it keeps up and he's able to come home tomorrow. I'll keep you posted.
Love to all,
Thursday, May 13, 2010
After a trip to the doctor, blood work, x-rays, and a conference call with his pediatric pulminologist, Gaines has been diagnosed with pneumonia. He was admitted to the hospital this afternoon. He has an IV giving him steroids, antibiotics and fluids. They have increased his oxygen to a liter (he has been at a half liter). So far he is holding his own. If everything goes well, he will be home by the end of the weekend. If he starts going in the wrong direction, the doctors have already told us we will be headed to Children's Hospital in Birmingham.
Please say a prayer for Gaines...a speedy recovery would be a blessing.
Wednesday, May 12, 2010
1. We've had a mini-victory tonight with Gaines. I put some of the Chicken Parmesan I made in the food processor and fed it to him. He gagged on the first bite so I stuck my finger in it and let him taste it. After that, he grabbed the spoon and pulled it to his mouth. He didn't consume a lot of it, but he was interested in having it in his mouth and was kind of getting familiar with the texture. I know it sounds small but it is huge for Gaines. Another highlight, he took two of his bottles today via sippy cup. Two tiny steps in the right direction.
This is still part of number one but I thought I needed a new paragraph. Someone mentioned in a comment today that Prevacid caused their child's appetite to decrease. Gaines is on Prevacid too so I researched it a little and called his doctor. He called in a new prescription to switch him back to Zantac and see if it helps his appetite. I think given today's tiny success, I might wait and see if we are on to something with "real" food but we are ready to try the medicine change if this doesn't get the ball rolling. Thanks for the tip!
2. I think Reed has an older child syndrome. He was spraying my flowers outside today with his spray bottle (best 96 cents I've spent in a while) and he said, "Am I doing it perfect, Mom?". Poor little thing already has a need to be perfect. Other older children will understand this. You rogue second and third children will not.
3. So, remember forever ago when we shot that footage for the 700 club? Well they discontinued that portion of their show but they are still airing them on their website. Here is the link if you are interested.
Love to all,
Tuesday, May 11, 2010
That child just has no desire to eat. He only acts hungry when he’s taking steroids for a cold. He does ok with his bottles once you get them in his mouth but he cries and fights you until you get it in there. We’ve also been back to pushing baby foods and I have to fight to get a half baby food down him. And by fight I mean either force his mouth open with a spoon or wait for him to cry and shove a bite in. I feel like that’s not the right way to be doing things but I don’t know what else to do. Now he’s taken to just leaving his mouth wide open with a bite of food in it. He’s kind of like, “Fine, you got it in but I’m not swallowing it”. It’s just a mess…I don’t know what to do. I know he needs to experience new textures to get over his aversion to them but it is just such a fight with him. I think we are both physically exhausted after each meal.
Other than the feeding, he’s a sweet and happy boy. He’s learning to clap and say and wave “bye bye”…I wouldn’t call them mastered tasks but he’s working on them. He was super happy to see Ms. Kristen yesterday after she’d been away for a week. I didn’t see it but Beau said he just loved on her and had a huge smile on his face when she picked him up.
Oh…Reed has taken to calling Gaines “Gaineser”. I’ve called him that here and there but now that’s pretty much how Reed refers to him regularly. He’ll say, “Mama, Gainser is touching me” or “NO! Gainser…NO!” because he’s touching his scooter or something. Also, all of a sudden, Beau and I are no longer, Mama and Daddy…we are now Mom and Dad. Beau was Dad first which I thought was kind of funny until I became Mom and then I wasn’t as impressed. I laughed so hard Saturday morning at him. Beau was eating breakfast and Reed crawled in his lap and said, “Dad, you wanna share your cereal with me?” Obviously Beau didn’t really want to “share” his cereal but due to the “share” word being brought out, he pretty much had to. I hurried up and ate mine because I really do not like to share my food. Happy to fix/order you your own, but don’t expect any of mine. And if I do decide to share my food with you, you better believe you are getting the lesser fries, chips, brownie piece etc. Not the premium ones. Is that selfish? Probably. We won’t dwell on that.
Look at this picture of my boys. People always ask who Gaines looks like. I think you can tell from this picture.
Also, you know how I said the other day that I had no problem getting Reed to go to sleep? Check out these pictures from last night. We found him asleep in his floor. Two nights before, we barely found him asleep under the dining room table. I’d been in and out of the dining room for two hours and finally saw two little feet sticking out. Reed was just as asleep as he could be.
Love to all,
Friday, May 7, 2010
About the sleep, I don't have a problem really getting either of them to bed...its just the mornings. Reed goes to bed at 7:30. We had him going to bed later the last time we had this problem and his pediatrician said he should be in bed between 7 and 7:30...considering his wake and nap times. I know you can't do everything by the book/doctor but our pediatrician has never lead us wrong so I'm trying to stick to it.
Speaking of pediatrician, Gaines had his one year check-up today. They're going to let us keep him. He did not gain as much weight as I'd hoped...17 lbs 3 oz which means he's in the less than 5th percentile on weight. The good news is that he's in the 55th percentile on height. After talking to our superdoc today (I just love him), I've decided that I'm going to sort of change philosophies on Gaines. We are so nutrtition focused that we aren't letting him progress on foods. Because bottles have more calories, we'd rather him have those, and those are so concentrated and thick, he has no desire for actual food...baby or soft table foods. It's time that he's venturing into all of that. Plus feeding himself would help develop his fine motor skills.
I won't bore you with everything but I am asking for prayers on this. Its kind of a leap for me. The nutritionist and pulmonologist he sees every two months have him on all these extra bottle calories so they might not be impressed with the new plan but the way I see it is, what can it hurt. It's not like he's breaking the scales doing it their way. I guess he can always go backwards but that's where your prayers come in. Please pray for weight gain and interest in actual foods.
In other news, I took the afternoon off for today's appointment so afterwards we went to visit our old nurse friends in the NICU. It was so great to see them and I think they were all excited to see Gaines. He jabbers non-stop these days but he just stared at them in awe. I wondered if he knew where he was. Probably not I guess but it was still a fun visit.
It's been just me and the boys this afternoon so I've been a little bit of a supermom. It's crazy when you have them both by yourself but I love the feeling when they are both in bed and the house is in order. I feel like I accomplished something. Granted, we had a frozen pizza for dinner and there were no baths (Friday baths are not mandatory here...I'm sorry if you think that's gross) but I do have my sheets in the dryer and a couple other weekend projects in the works. I'm hoping to do some planting in my flower pots tomorrow amongst a few other things. Its my first full weekend at home in weeks so I plan to get some projects done and do a little relaxing. Beau informed me earlier this week that I had a problem just letting things sit "undone" and relaxing (he does not seem to suffer from this same disorder) but I plan to prove him wrong this weekend.
Oh...something I was thinking about earlier in the week. This will make up for my snide Beau comment above. I travel some for my work and people always ask me who takes care of my boys when I'm gone. Uhhhh...their dad? I continue to be baffled that I get asked this question ALL the time. I've always known that I'm blessed with an awesome husband but from these questions, I've come to learn that he's even more above average than I'd originally thought. I am very, very lucky to have a husband who is an active father/partner in raising two little boys and who I have complete confidence in when I'm out of town. I couldn't have my current job without him.
Now, nobody tell him I said that.
Happy Mother's Day Weekend!
Thursday, May 6, 2010
4:17-Reed is at my door reading a book that makes noise.
4:18-Reed is back in bed with a threat on his life if he gets out of his bed again. He tells me he wants breakfast. I tell him it is still dark outside and not time for breakfast. I do not win points for this.
4:19-Back in my bed.
4:22-Gaines is awake and crying. Trying to be tough and let him cry it out but he’s right next to us and the pillow over my head is not cutting it.
4:32-I give up and move to the couch (Beau’s night with Gaines…my turn with Reed) but can still hear Gaines…through my pillow that is on my head again.
5:00 or so…crying stops
5:13-Reed needs to go potty.
5:14-Reed tells me he wants a banana next week. I say fine and don’t ask any questions.
5:15-I almost gave in and let him watch cartoons until 5:45. He wanted Berenstain Bears or Veggie Tales DVD. I offered Disney channel as I was not about to find and start a DVD.
5:16-Disney does not cut it and Reed freaks and cries on the floor. There are convulsions involved. I tell him fine…he can watch nothing and turn off the TV with as much authority as you can turn off a TV with one finger. I am the meanest mom.
5:17-Reed cries for a while…”I want my daddy…I want my daddy”.
5:18-I’m back on the couch pillow over my head again plotting his punishment if he wakes up Gaines.
5:26ish-The cries turn from “I want daddy” to, “I found money”…still crying. I don’t know why that was sad.
5:32- I realize that he is standing at our bedroom door in serious jeopardy of waking up Gaines…again.
5:33-I get off the couch and go get him and let him put the dime he found in his piggy bank.
5:34- Turn on the light and offer to let him read in bed. He wants to read his Bible. That’s awesome, but I can’t find it. He tells me he put it behind his headboard so I get on the floor and scrounge around under the bed until I find it.
5:35-I leave him in his bed “reading” and threaten his life again if he leaves his room in the next 10 minutes.
5:36-I am still holding strong on my new “Do not leave your room before 5:45 a.m.” mantra. I feel a little self satisfaction despite being bitterly tired.
5:43-I hear Reed in the dining room and give up. 5:43 is pretty close to 5:45.
Say a prayer for my sanity.
Wednesday, May 5, 2010
I said, "Reed, who is your girlfriend? Do you have a girlfriend at school?"
He just pointed at me and said, "You!"
Made my week.