Pop

Had our first trip to the ER with Spencer. I guess his g-tube got caught on his swing and I lifted him out to feed him. I lifted up his shirt and noticed it was missing. He didn't cry or anything. We then ventured over to the hospital to get it re-inserted. He did a really good job in spite of not having eaten yet. Now he's pretty tuckered out.

Oi

We had Spencer's first high risk appointment the other day. He is now on 20 calorie formula! It's so nice to be able to follow the directions on the can for formula. We also met with speech, ot and a social worker as well as his doc.

We were supposed to have gotten his first cast done last week, but I blanked out and went to the wrong location. So Spence gets out of it until next week. He is getting that done, his button put in and a blood test...poor kid.

After the high risk appointment the other day, we had an ENT followup. One of the aids went over his medical history and mentioned Pierre Robin Sequence and some other syndrome. It is most likely stuff that was ruled out, but maybe genetics will have a diagnosis or something for us in August. I'm going to look into it more at our next high risk appt in six weeks.

Spencer is doing really well. We have OT with speech and PT coming out to the house, probably starting the week after next. We have an IEP meeting of sorts next week to establish goals and such for him, and we should start after that. They come to the house for the meeting and everything.

First Steps

So today Spencer was supposed to start casting for his club foot. Problem was is I went brain dead and forgot that his appointment was in Mason instead of Cincinnati. It has been rescheduled for July 1st. I'm convinced it was all part of his plan...


He has been sick for the past couple of days with the poops. He has been on 20 cal formula and pedalyte. He has been in good spirits considering.

Over the past week I have met with First Steps twice. He will be recieving PT, OT and Speech therapies a couple times a week from them. I will find out when we can start and such pretty soon.

Home.

So we are home. I think I was in denial about how much work taking care of a baby is. I have a feeling we won't be sleeping ever again.

Anyhow, I found out yesterday that ortho typically doesn't do boots and bars with clubbed feet anymore, which is great news. Spencer would go nuts. The casts are going to be bad enough with him. He has an ortho appointment, which we're not really sure if they will cast him then or not, but we are going to get his pictures done before just in case. Having a kid with a cast and oxygen would just be some too sad (but adorable).

We have a variety of appointments before August. Pretty much with every dept in the hospital. Plus doctor's appointments.

We did learn that Spencer will get SSI for at least a year and it's quite a substantial sum of money. It will help out so much so maybe one of us can go part time at work.

Yay!

Spencer is coming home tomorrow! He showed improvement on his sleep study, and they have turned his oxygen down a bit. He will be coming home on a 1/4 liter at 100%. He is still on 24 cal formula, but they might stop giving him protein with it. He has a ton of appointments in the next month, but at least he's coming home.

The best feeling was walking out of the RCNIC and realizing it would be the last time we would walk out of there without him.

We are last minute finishing everything. His dad is currently struggling with his playpen, and I'm going to go buy some bottles. He uses the Habermann bottles (at 30 bucks a pop, luckily we scored some), but we are going to use regular bottles as easy storage. I am taking the next few days off work to stay home and bond.

We won't be doing much staying at home. We have a WIC appointment on Wed and a bazillion other appointments over the next month.

Waiting

So Spencer went to sleep study last night instead of tonight. We were hoping that we would have the results back today, but alas they did not come in. Since it's Friday, they probably won't come in until Monday. If he did better, we could be home by Tues or Wed. Needless to say, if he doesn't, we'll be devastated.

Today I was trying to bolus feed Spencer and forgot to take the cap off. I couldn't figure out for the life of me why in the hell it wasn't getting down the tube. And then after I figured the whole mess out, I got milk everywhere. And there Spencer was, contently sucking away on his pacifier, while I was getting his dinner everywhere.

He got to go to the playroom today. It's not much of a playroom, but it's a change of scenery. We were convinced he was going to have a ball. He cried nearly the whole time he was strolled down the hallways and whenever his paci fell out of his mouth the whole ten minutes we were at the playroom. At least we'll have some interesting pictures. There is one of him kind of sleeping instead of playing. Figures.

I discovered today that Spencer doesn't have a toe nail on his baby toe on his left foot. It was the toe that was bent all crazy when he was born, that is slowly righting itself. So we'll see if the nail ever comes in.