Archive for January, 2008

Breathing Easier

January 29, 2008

Well, I certainly don’t want to jinx things, but Ben does appear to be on the mend. The steroids prescribed to help calm his wheezing did the trick, and over the weekend we saw a marked improvement. That medication is now done, and he is still doing well. The only significant thing we are noticing now is that he is EXTREMELY tired…but that’s to be expected. By seven PM (he usually goes to bed at eight), he is falling asleep on the couch. He’s also upping his nap quota a little. The congestion is still there, but seems to be mostly nasal right now. Let’s hope that he’s finally kicking this thing…we’re staying home until he does! We haven’t been to school for a week and a half, and really haven’t left the house…I just want him to get better.

The downside of all this staying home is that I’m going stir crazy here…the house is really getting smaller every day. Usually we get out a few times a week, if only to go to school. Today I finally cracked and we went to Target for a walk and a cup of coffee. I think that it’s hardest because it’s so cold and grey out…it’s not even like I can take them out in the stroller for a walk. So I”m just here at home with my worry, my infant and my sick kid. It’s been trying.

Ben has been excited because I have relaxed the TV rules and let him watch some TV while sick. We have discovered that he LOVES the muppet show…I have a bunch of old episodes on DVD and we’ve been watching a lot of Kermit the Frog. Ben especially loves the Harry Belafonte episode with all the cool drumming. I know that TV isn’t the devil, but I really try to not let him watch it and not have it on during the day…I try to just play with him as much as possible or encourage him to play on his own. But he’s been so cranky that honestly sometimes it’s the only way we get from eleven AM to lunchtime…that’s a magical hour for Ben when he is crankiest during the day.

My efforts to get Toby to sleep longer at night (allowing me to return to a normal bed time of ten and thus not miss the LOST premire this week) are failing miserably…though he is reaching a normal schedule of eating at two AM and Five thirty AM….so I can’t complain too much. I’m still going to bed at eight or nine so I can get up with him and still function the next day. I will just have to bite the bullet to see LOST this week…and go to bed late.

I am sure you are wondering how I manage posting being this busy…it’s the magic of bedtime…Ben goes to bed at Eight, I blog while Scott hangs out with Toby. I call it my sanity hour…I blog and check Email.


If I tell you about it, I can’t cheat.

January 28, 2008


January 24, 2008

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Meds, originally uploaded by randallfam.

Ben is now on five medications. His standard Lasix (sp?) and prevacid, but also Augmentin, (an antibiotic, for his ear infection), Prenisolone, (a steriod, to help control wheezing and hopefully relax his bronchial tubes), and of course his nebulizer treatments. This is his evening selection.

Continuing Adventures

January 24, 2008

Thank you so much, everyone for all the Emails and hopeful words. Each day is better. I think that getting through this first time of Ben being sick wile we have Toby is going to be the hardest, because it’s a readjustment, just like everything. Knowing that people are looking out for us always makes things easier. 🙂 I was really worried on Monday night, and just let myself worry into “what if” land. Since then things have gotten better and I”m taking this in stride now. Scott, as usual, is a Rock. Worried, yes, but a rock nonetheless. Thank goodness. We can only afford one worrywart in this family, and I”m filling that position.

Well, if there is a midpoint between monday (Ben feeling lousy) and yesterday (Ben feeling better), we’ve reached it today. Ben did NOT feel well this morning, and we went to the doctor for a follow up from his appointment monday. Pulse Oxygen = 55 (bad) and after a breathing treatment in the office didn’t go up by much. The doctor put Ben on a course of oral steroids, thinking that if his wheezing and some of his congestion is due to asthma, it will help. If this is the case we’ll know in 24 hrs, so it’s back to the office tomorrow. We’ll see if he is better, and if not we’ll consider oxygen at home until he can get better.

So we spent part of the day at the doctor and picking up new prescriptions (thank God for drive through pharmacy!), then home for lunch and to watch muppets on the couch. Ben is feeling a little better, I can tell because he was shouting at the Muppet Show on the TV.

so you may ask, how is Toby doing? Well, he’s a little snotty, and sneezy, but generally really happy. So if he has what Ben has, you sure wouldn’t know it. Of course, a small head cold for Toby could be a major deal for Ben, so who knows. Between the two of them, though, we need stock in a tissue company. We’re up to our armpits in Snot. There’s a vision for you.


January 23, 2008


January 23, 2008

Just to let you all know, Ben is on the mend. After 24 hours of breathing treatments every four hours round the clock, lots of propping upright, and the new antibiotic, he is feeling better. He woke up yesterday much pinker, and happier. He is eating again, and today was full of sass and joy, so that is good. He is still sleeping A LOT…but that is to be expected.

His cardiologist called us yesterday, too, which was not only very nice, it was also very helpful. We discussed what was going on, and he gave us some ideas about treatment should this latest antibiotic not work. Mostly, the conversation centered around ways that we can continue to care for Ben at home, this bout of sickness and in the future. I feel so fortunate that we have such good doctors who know Ben and trust us, and that we work together for his care. We are so very very lucky.

Having Toby out for a sleepover turned out to be the best decision ever. Yesterday morning during Ben’s nap I was able to clean and sterilize our kitchen and bathrooms, do tons of laundry (mostly Ben’s, but also all the changing table covers, towels, etc.) so he came home to a clean house and hopefully won’t get what Ben has. Also, last night we all slept well….Toby is still waking at night to eat, but goes back to sleep pretty well now….thank goodness!

Gotta go, the babies stir….

It’s never been about fair

January 21, 2008

It’s been a trying day.

Ben has been sick for about a month. We’ve gone from cough to runny nose to sneeze and runny nose, to bad snotty nose. Then we did a ten day antibiotic run (finishing thursday last) for a slight ear infection. Rather than kick the whole thing, Ben went off his food yesterday and today is coughing, congested, lethargic, and again we were at the doctor’s office. I can’t set Ben down, because he breathes better when upright. The doctor put him on a stronger antibiotic (his ears are still infected) and we’re doing Albuterol nebulizer treatments every four hours. Ben is not a happy camper. I guess it’s a judgement call whether to take him to Children’s Hospital or not, but his Oxygen saturation was pretty good today (71 when sitting up, which is normal/excellent for Ben), so we’re at home. Pretty much the only thing that children’s can do that we can’t is put him on Oxygen (and give closer pediatric care). Scott and I feel pretty strongly that if we can treat Ben at home, we will…but within reason…so don’t worry, if he needs the ER, we’re going there.

My mom called this morning to check on us, and I have never been so happy to hear anyone’s voice. I just about cried. She came over to help care for Toby so I could be with Ben today. Toby is having his first overnight at Grandma and Grandpa’s tonight. I am so heartbroken about this whole thing. I can’t believe that I am spending the first night away from Toby when he is six weeks old…but I know that this is the best thing for everyone.

When we decided to have another child, it was a really heart-wrenching decision. There just isn’t a right time to make that choice when we are living with Ben, but we want a family, so we have to learn to live with Ben and have the life we want. It is all part of the way we choose to raise Ben and live our lives. In my mind I always knew how difficult it would be when he got sick…but it doesn’t make these days any easier. It’s just not fair to Ben, or Toby or Scott and I, or anyone to live this way, but it’s the way things are. Ben needs us, and Toby needs us…but right now Ben needs us more. Ben spends the larger part of his days healthy, happy and full of joy, so we all have to learn to navigate the sick times. I spend a lot of time (probably more than I should) thinking about our lives with Ben, and where the path we are on will eventually take us. I spend a lot of time thinking about how we will deal with the days ahead and how we will help Toby walk this path with us. It’s painful and heartbreaking. There is a small part of me, though, that knows that I will raise a son who is compassionate, loving, and that I will teach him to live with the grace that Scott and I try to live each day. There is a larger part of me that knows that I am not the one who will be teaching these lessons to Toby, though, that Ben is teaching us all how to let go and live life. I guess some days I just wish it was easier.


January 20, 2008

It’s been a long weekend. Ben has been fighting a cold for … well, forever. I think it’s been like three weeks, and he’s still working on it. It breaks my heart because he is not himself at all. He is whiny, tired and generally not happy. Compounding this is the fact that he’s teething and the ongoing adjustment to Toby…it’s been stressful for Ben.

This is a very brief entry, I mostly wanted to post some pictures. I have some pictures of Ben at therapy on our flickr site, but I don’t have the time and energy to write about them right now, so they will have to wait.

But there are other pictures


January 18, 2008

Toby went for his one month physical today: 12 lbs, 8 oz. 23 inches long. In six weeks he’s gained four pounds (because when he was discharged he was 8 lbs 6 oz) and grown two inches!!! Amazing. He’s our little beefcake.
Ben had a great sleepover and was a very good boy at school today…it was nice for him to be able to be the center of attention again, I think, but I missed him when he was gone. It’s strange to not have him around.

gotta go and sleep. Oh precious sleep.

Again with the fast…

January 16, 2008

…everyone is sleeping and no one is screaming right now, so we’ll see how long this lasts. 🙂

Ben is seeing a new OT at the private clinic we take him to once a week, and that has really been an adventure. He LOVES his PT, but when he first started seeing her (about this time last year at school) he wouldn’t do anything at all for her…he cried and refused to work at all for her for about two months. Looks like we are in for a repeat with his new OT…Last saturday I took him to therapy and he threw a 45 minute tantrum, screaming and crying whenever she laid hands on him. Yesterday Scott took him for an appointment, and there was less tantrum, but lots of ignoring and refusal to do anything. It’s tiring, but I know it’s just Ben being a kid. He’ll come around. In the meantime he is also getting OT at school, so at least he is getting some treatment until he decides to be friends.

At almost six weeks. life with Toby is starting to settle down. I”m wondering how and when I start worrying about working on a sleep routine with him. He’s sleeping for longer stretches, but new problems are starting to arise….like last night he was overly tired and fussy from about nine until eleven. I think he was overstimulated and over tired, and just fussed and cried. So if we start putting him to sleep at eight thirty or nine, will that solve the problem? Is six weeks to early? I’m not sure how babies work, and everyone seems to have a different opinion. You would think that after having done this once I would figure it out, but sleep is something we never had to worry about with Ben. We put him down in his crib and he slept. End of story. All night and two naps. So I’m not sure where to go with a baby who needs some help with the sleeping thing. I”m sure I”ll figure it out. I don’t want to wait too long so that he establishes a pattern of staying up late and not napping, but I don’t want to start too early when he’s not ready for a routine yet. Oh if only I had a manual!!!! Maybe on Ebay…. (haha)

The end of the week is finishing up big…tomorrow is Ben’s parent/teacher conference at school, and my six-week postpartum check, then Ben is going for a sleepover at grandma and grandpa’s house. Friday Scott has the day off for a physical in the morning, and we are taking Toby for his one month check in the afternoon. Friday night is dinner with my fam for my mom’s birthday. Happy Birthday, mom! We’re looking forward to seeing friends this weekend, and hunkering down on Sunday for a little quiet time.

Two blog updates in two weeks. I’m getting the hang of this two kids at home thing.