What a week!

We've been pretty busy in this house this week. I don't like weeks like this. Weeks when we have something to do every day. Molly isn't a big fan of them either. It throws off her sleep schedule. She's very routine. We do well with routine.

Our week started off with Early Intervention on Monday. We have added a music therapist to our speech therapy. For those of you who don't know Molly loves music. It's always been our go to to calm her down. When she was in the hospital she used to have a seahorse that we would play to calm her down. And now all of the shows that she likes...OK loves...involve music - Mickey Mouse Clubhouse, Dora, Strawberry Shortcake, Little Einstein. We also play Baby Mozart before she goes to bed every night. So I really think she'll benefit from the music therapy. It's a huge part of communication and supposedly it gets kids motivated to move around. We'll see.

Molly also shocked us on Monday. She has huge feeding issues. This is the most frustrating delay we are working on right now. I'm not frustrated with her, I'm just frustrated because I can't help her or make her understand why she needs to do it. Everytime I feed her I put some food on her tray, puffs, yogurt drops, Cheerios and Monday she decided to pick them up and put them in her mouth. At first I didn't even call Jay because I didn't want her to stop but she just kept going. She makes us so proud every day!

Tuesday - my car a/k/a the money pit, is crapping out. We've put so much money into it and we aren't done yet so Jay did all of his homework and we ended up buying an 06 Equinox. He was doing all of the running around for that plus he had class that night so it made for a really long day for both of us. Not to mention this was the last night for our night nurse. It was very sad for us. She was a part of our family for almost a year. She's a great person and I was really sad to see her go.

Wednesday - Growth & Nutrition. This appointment is so frustrating. We are gone all day and they are never satisfied with Molly, what we're doing and where we are. For example, they weighed her and she is now 22 lbs, 10 oz. That's up almost 1 lb in a week. They didn't believe the scale because she has gained 3 lbs in a month and a half. They wanted to weigh her again but I assured them it was correct. Now she's gaining too much weight (see what I mean). So we are cutting out 2 of her g tube feeds. So now she eats by mouth 3 times a day and gets formula through her g tube 2 times a day. They said from a feeding stand point we are so close to no longer needing the g tube but she needs to work on drinking. She is never thirsty because we give her so much water through her tube not to mention her food has a lot of water in it. So we are going to work on drinking and hopefully we'll consider getting that tube out. I'm not in any hurry to get rid of it. Especially with her upcoming surgeries. It has been our saving grace for a lot of things so I'm OK with keeping it for a bit longer.

Thursday - the dreaded appointment with the general surgeon regarding Molly's intestine surgery. So I called a few weeks ago to make her appointment in March. The only appointment they had before April was tonight. We wanted to speak to him before April because Molly's having surgery April 4th to have her trach site closed. We were considering doing the LADDS at the same time. One less hospital stay, one less intubation, and we would get it out of the way and enjoy the summer. Our biggest thing was to make sure she was in tip top shape and recovered completely going into the next cold & flu season. We had decided that we were definitely going to do the surgery. We had a bunch more questions for the surgeon. We wanted to know how long she would be intubated afterwards, how fast is the recovery, what are the odds of her developing issues afterwards. It comes down to "they don't know". There isn't enough information, research and data on this type of procedure. We don't know how malrotated she is and he won't know until he opens her up. We don't know how long she'll be intubated. He said there is a chance that she will come up extubated. It will depend on how well her heart and lungs hold up during the surgery. If they can get an epideral catheter in to manage her pain, they can extubate in the OR. Obviously that's what we are hoping for but not expecting. She never does what we want so we'd rather be pleansantly surprised. If I never have to see her intubated again I would be very happy. We don't know how her recovery is going to be. Every kid is different and since she's Heterotaxy and we are unsure of her anatomy we really have no idea what we are getting into. He will also remove her appendix while he's in there. So we are expecting to be in there for 10 days. Right now we are planning for the 3rd or 4th week in June. He is booked for April 4th. He spoke to Ravi, the cardiac attending that was basically Molly's cardiologist while she was in the hospital and probably knows her better than anyone. He won't be around much in May and they will both be around in June so June it is. We have a few things planned in June so we are shooting for the 3rd week. This will also allow us to enjoy Easter and more importantly her birthday (which I've been planning for 2 months now). It's a long procedure, 6-8 hours which is one of the reasons we have been dragging our feet but honestly I couldn't be more confident going into this. Medically Molly is in the best shape she's ever been in. She's so healthy, her echos look better and better each time, her lungs are so strong (trust me I hear her scream and I think my neighbors do too), we are working on her abdominal strength and she's getting so big. These are all great things for her to go into a big surgery like this. We have consulted with all of her doctors and they all think this is a good time so we are going to take advantage of this opportunity. She's going to sail through this. Will our worries be over once this surgery is done? No. We will always have to watch her to make sure she doesn't develop an obstruction but we will know we have done all we can and have made the best decision for her. I'm so glad that appointment is behind us and we can "try" to put it out of our minds for a few months. Who am I kidding? It's never out of our minds.

Molly is doing so well. She's getting so big and showing more and more of who she is. I love that kid (just in case you didn't know or couldn't tell)!

As always, thank you for continuing to check in on our love!

Kerry