Thursday, November 19, 2009

Progress/No progress

Some days things really seem to be going well with Max.

He is not waking up at night anymore and is consistently sleeping until 6:30-7am. It was 5:30 for a while which is just too early.
He may still wake up crying for mama, but he lets the nanny comfort him and it doesn't last for an hour. A plate of pancakes and sausage helps as well.
He lets the nanny put him on the toilet. He may scream or say no, but at least he can be coerced with candy corn instead of screaming in misery because he has to potty, but doesn't want her to help him go.
When we're the ones home we're seeing fewer tantrums.

We have had some new issues develop though. Well really just one. When he gets upset he's started getting shoes and clothes out of his closet and drawers and uses these items to comfort him. I would have expected this for an institutionalized child, but Max seemed to have plenty of clothes/shoes at his foster home so I'm not sure where this came from. I do remember that when we first got him he had to have shoes on him/in his hands at all times. I thought then that he wanted to go to try and find his foster mom. His attachment to his shoes persisted, but this seems different. He's also taken to burying his face in his bed or up against a wall and not looking at us when he's upset. It makes me so sad. I feel like we're not doing something wrong and now he's looking to other means of comfort besides us. At least he'll let us redirect him from these activities to us and then lets us comfort him, but it's a bit disheartening. I still think all of this stems from me going back to work so soon after cleft surgery. Unfortunately that wasn't optional.

Ellie has had some rough spots this week as well. I think she's just really tired, but she's not wanted to go to school the last couple of days which is very unusual for her. I've emailed her teacher to make sure that there's not an issue there, but I suspect it's fatigues since she's been fairly grumpy at home too.

The good news there is even when she's grumpy, and even when she tantrums, it's not the frequency or the extent that it was 3-4 months ago. And, if we can recognize and intervene earlier in the pattern (which we're getting better at) she's even been able to calm herself down several times. This is big progress and I'm trying to focus on that instead of the problems.

We're also doing better with the bathroom with her. We are trying to keep her on an every 2 hour bathroom schedule. When we can do this she's not having accidents. If we exceed that time we've had a couple of small issues, but no big accidents. She's also been dry at night about 1/2 of the nights this week which was previously unheard of. Most importantly no infections this month!

Okay, that's the gory details of this week. I still need to post pictures. Not of tantrums or potties though.

Friday, November 13, 2009

Palate Update

We had our second follow up with the plastic surgeon today. We just love him.

Max is doing very well. He seems completely recovered. No pain for sure. We are still having occasional nighttime awakenings, but I'm not sure if these are surgery related or more due to the fact that I'm back at work. He's been on a soft diet for the past two weeks, but he hasn't seemed to mind this at all.

The area of his palate that I was initially concerned about (by the gum line on the side where the created the flap to pull mid line) has healed up very nicely. There was an area in the mid line towards the back of the palate that was concerning me as well. The doctor saw it and said that he still can't tell if it's a full fistula or a superficial opening only. He says that he thinks that it will close in the next couple of weeks, but if it hasn't we need to see him to talk about repairing it. If it has, then we're good until our next cleft team appointment in August! Our next surgery would then be between age 4 and 6 for a lip/nose revision and possibly palate lengthening if needed. That would be ideal, but as worried as I was about a fistula early on, I have a peace about it now. It wouldn't be the most fun to have to do another surgery this year, but I realized after this one that it's not a huge deal either. Max really did well with this surgery. Even if he needs a fistula repair this is pretty small and I expect that he'll do fine with that as well. The surgeon also cleared Max for a full diet, so we came home and had some cheddar bunnies to celebrate.

Other good news. My camera lens came yesterday and works perfectly. Hopefully I'll get some cute pictures this weekend to post.

Friday, November 6, 2009

Finally Halloween Pictures

This is his pouty face. He did not like the hood over his head.

Taken the night before. Before the camera lens broke. Uploaded on my crummy computer since the laptop is broken - thus the wait for the photos.

Monday, November 2, 2009

Feeling Grumpy

1. I was on call this weekend. Never fun. I'm tired.

2. Max has been waking up at night again. All he wants is me. Don't get me wrong, I'm glad that when he calls out for "momma" he wants me, but I'm tired.

3. Halloween is a busy weekend. Squeezing all of the Halloween fun in while taking care of 40 inpatients is hard. I'm tired.

4. Jason had the kids all weekend. He's tired and grumpy. He's not a very good housekeeper. I got to clean up when I got home, give the kids baths, and do a big chunk of the bedtime routine. I'm tired.

5. Our camera lens broke this weekend and I get to deal with the waranty and getting it fixed. I was able to get a couple of pics of the kids in their costumes prior to it's breaking, but missed lots of cute photo ops.

6. Our laptop broke this weekend and I get to deal with the waranty and getting it fixed.

7. I think Ellie might have another UTI. I still haven't heard back from the urologist about her appointment.

8. I think Max might have a different hole in the back of his palate. Yes, you can tell me not to worry all you want, but you all know I'm worrying. Our follow-up is not until Friday the 13th. Let's hope that's not a sign.

9. Our pediatrician is only offering H1N1 shots from 8:30-11:30 on Tuesday am. This is a hard time for me to make and I would have to take Ellie out of school for this. This seems silly to schedule this during school hours. I'll make time to take Max because I'm not really sure he had it. I'm sure enough about Ellie that I'm not going to pull her out of school. Max also gets to restart his vaccination series at this visit. This should be fun.

10. I still need to make time to take Ellie in for a blood draw.

11. I need to get a stool sample from Max to take in. Good times.

12. My car is a disaster and I don't know when I'll clean it.

13. I haven't paid bills or balanced my checkbook in 3 weeks. Hoepfully nothing is late.

14. Have I said I'm tired.