Wednesday, February 25, 2009

Recessed Lighting

Before our last trip to San Antonio, we decided to install recessed lighting in the kitchen to replace the old, large rectagular flourescent light. We had put in (and then taken out) recessed lighting in the office, so Ben had experience. We decided the lights should follow the counter, so we put two above the stove and three in an "L" shape along the other counter. It almost makes a perfect pentagon on the ceiling. Here's a before picture with the old fixture and our paper templates we used to decide where the new lights should go:

And here's the after picture:

We also took down the pendant fixture we had put up over the sink. I think it looks a lot nicer now. Ben did a really nice job.

_________

Lauren is doing fine, she didn't have an infection of any kind like I thought. They took an x-ray and didn't see anything wrong and nothing came up in her blood or urine samples. The doctors said she was probably a bit constipated. She was giving them a really hard time in the ER and acting like she was in a lot of pain, so they gave her an IV and a bit of morphine. I think that helped to relax her and Ben said she got really happy after that. The next morning she woke up and was totally fine and she hasn't had a problem since.

Natalie's follow up with the neurosurgeon went well. He was happy with her CT scans. The font part of her lateral ventricles have gone down in size, so the shunt has made a difference. He wants to plan the surgery on her spine for March 19th. I was a little hesitant to schedule it so soon, I wanted to have some time off from the hospital, but after Ben and I talked about it, we decided it would be better to get it over with. Once that surgery and follow up are done, we'll be done with the hospital for a while and we can get on with normal, plus, we think it's a good idea if she has this and has time to heal before she starts trying to crawl or walk. I'm going to call him tomorrow to let him know we're ready to schedule it. This surgery will have a longer hospital stay afterwards, which just seems crazy to me since this is her back and not her BRAIN like the last surgery.

Monday, February 23, 2009

The Road to San Anton

It takes us about three hours to drive from our house to Victor's house.  It's only about 170 miles, but we take a highway that goes through at least three towns with stop signs and lights, so it makes it take a while longer.  Once we leave our house, it takes us about half an hour to get to the 281.  Then we spend about two hours driving on a road that looks like this for most of the way:
Pretty boring, huh?  Usually Ben drives, I look out the window, talk to him, cater to Lauren, and play DJ, Natalie sleeps, and Lauren rides like this:
She's got her headphones on (or "heliphones" as she likes to call them (don't know why)) and she's watching one of her movies.  She's got a pretty good ride back there and does well.  Being potty trained makes the car rides a bit trickier.  She tells us when she needs to pee, but she doesn't always give us a whole lot of notice.  Thankfully we've made it to a bathroom every time so far.

I don't know if it's from holding it in, or just not knowing how to clean herself up real well yet, but I'm pretty sure she has a UTI or bladder infection.  We got down here Sunday night and she was fine.  Last night she kept going to use the potty.  She'd go every five minutes.  I thought she was just being annoying and playing some sort of game.  Then this morning she kept saying her skin hurt.  We put lotion on her thinking maybe she was dry and itchy.  Then she started acting like she didn't feel well and fell asleep on Ben's lap.  Then this afternoon I took her to go pee and she started crying.  I knew what it was then.  We came back to Victor's house and decided Ben should take her to the ER.  We're too far from home to get to her pediatrician's office and we don't want her to have to wait any longer.  I just hope they don't have too long of a wait there and she can get started on some antibiotics and get feeling better.

I took Natalie in for her CT scan this morning.  Once she got in there it took less than two minutes to do the scan.  It was really easy.  Tomorrow morning we go back so the neurosurgeon can go over the results of the scan and see how's she's doing since the surgery.  I also went and got my massage today.  I got a lavender aromatherapy bath and then an hour long massage.  It was really really relaxing and just great.

Now I'm sitting here at Victor's house with Natalie waiting to hear from Ben.  And trying not to turn into a big knotted stressed muscle again.

Thursday, February 19, 2009

Ya-Yas

This morning Ben and I went and got our taxes done. It feels good to have that out of the way already. It feels really good to be getting a refund.

We like the show "Diners, Drive-Ins and Dives" on Food Network. The other night there was some diner (or maybe a dive?) that had some delicious looking barbecue going on. Ben got the idea that we should try to make pulled pork sandwiches ourselves. They were so good! Ben did a great job and we liked them so much that we had the leftovers the next night for dinner.

Since all our back and forth to San Antonio has been hard on Lauren, we realized we needed to focus on her a bit more and do some fun things that she'd like to do. Today we picked up a popsicle freezing mold and she got to mix up some kool-aid and make her own popsicles. Yesterday and today she got to go to the park with Daddy. Natalie and I came along, too. Yesterday was beautiful and there were a bunch of kids at the park. Today was a bit windier, so there weren't as many people there. She has so much fun and gets to get rid of all of her energy and then comes home and takes good, long naps. It's great.


We have to be in San Antonio bright and early again on Monday morning for Natalie's CT scan and then on Tuesday is her follow up with the neurosurgeon. I think I am going to try to make an appointment to use a massage gift certificate I got at my baby shower while we're down there this time. (Finally).

Monday, February 16, 2009

The shortest month

... and we have seven different appointments for Natalie.  Four trips to San Antonio.  

Natalie and I are in San Antonio tonight.  She has an appointment tomorrow morning at 8:30.  It's called a Multi-Disciplinary Clinic and we're meeting with a Physical Therapist and an Occupational Therapist and possibly a Speech Therapist.  I'm not sure what we're going to be able to do for her since she's only 2 months old, but I guess I'll find out in the morning.

Ben and Lauren stayed at home since this is a short trip.  She's going to go to work with him tomorrow which I think is pretty cute.  She'll like that.  And she has dance class tomorrow.  Hopefully I'll be back way before then, but just in case, we wanted her to be able to go since she missed it already once this month and will probably miss it next week.

I spent a lot of time yesterday moving my music from my hard drive to our external drive.  I went through about 8,000 songs and combined them with what Ben already had on it.  It freed up about 7 GB of space on my hard drive, which is great because I have that much more room for pictures.


Thursday, February 12, 2009

Back and Forth and Back and Forth

I'm sitting at Victor's house in San Antonio.  We drove down yesterday because Natalie had an appointment this morning.  Ben wanted to help out around Victor's house to repay him for letting us stay here all the time, so last night he power washed the deck and today he stained it.  It ended up taking longer than he expected, so we're going to stay the night again and go home in the morning.  We'll be home Friday, Saturday and Sunday, and then next Monday we come back down here again.  She has an appointment at 7:30 am on Tuesday.  Then we go home again until the next week when we come back on Sunday and stay Monday and Tuesday.  And then we have another appointment the second week of March.

Did I mention the back and forth is starting to wear on me?  I think its getting to Lauren, too.  She had a rough day today.  She is out of her normal routine in a house not set up for kids, and since we were expecting a short trip, we didn't pack a lot of stuff for her to do.  She has her videos but that's about it.  Combine that with her resistance to a nap, and she was toast by 4 pm.

I think I need to start making a list of recipes I want to try.  I see so many good ones, but then there are nights I can't think of anything to make.  If I had a list, I bet I could make most of them before the year was over.  I've been trying to take more pictures, too.  I got a bunch of the girls yesterday and I think they're pretty good.  I will have to upload them when we get home so I can see them bigger and then I'll post some and email some.  I didn't bring my camera cord (again, I was expecting this to be a shorter trip).

Tuesday, February 10, 2009

Forgot to tell you sooner...

Lauren is totally completely potty trained! She hasn't worn a diaper (even to bed) in about two and a half weeks. It's great. She's so awesome. The playroom turned out great for her, she loves it and spends a lot of time in there just playing by herself. I'll walk by and hear her playing- my goodness, she has such an imagination. I was watching a video the other day of her from last January and I can't believe how much she's changed. Her hair alone is a huge difference. She looks more like a kid now than a baby or a toddler. And she's not even 3!

Natalie has been doing pretty well. I can tell she's still a bit irritated by the shunt. I would imagine it takes some time to get used to that thing being under her skin on her head. She does pretty well just taking tylenol. She's having a horrible time with gas, though, and she gets so upset she'll puke from the crying. I'm trying to keep giving her mylicon because I can't figure out what I'm eating that's doing it. I thought maybe it was onions or chocolate, but I went without those and it didn't make a difference. So I just don't know.

I got Natalie's CT scan scheduled this morning. She's going to go in for her CT scan on the 23rd and then we meet with neurosurgery for her follow up on the 24th. So we'll head back down to San Antonio on Sunday and come home Tuesday afternoon. Driving back and forth is really starting to wear on me. All of this is starting to wear on me. I'm keeping my spirits up as much as I can, but yesterday I started to feel like I had a head cold, and somehow that just amplified every other down feeling I was having. I want to know we're done with this for at least a month so I can make plans for people to come out here, or so that we can go do something that isn't centered around medical care.



Monday, February 9, 2009

Lauren

Accessorized

I just had to add this again because I love it so much.

Friday, February 6, 2009

6Q26

Ben and I took Natalie home today.  She's been doing great, still eating well and acting fine.  She's not acting like she's too irritated and she's just taking tylenol.

The geneticist made time to meet with us today before Natalie was discharged.  They found a deletion on one of her chromosomes.  It's a deletion of the 6Q26 section.  It doesn't change much of what we're going to do with her, but we will be watching her for an increased chance of cancer because there's a gene that restricts cell reproduction in there, and she doesn't have that.  Or, I should say she does have that, but only on half of her DNA.  Ben googled around today and found this brochure from England which describes some things associated with this deletion, and a lot of things match Natalie's symptoms.  It touches on the enlarged ventricles, the underdeveloped corpus callosum and the tethered spinal cord and sacral dimple.  And it sounds like usually there's a pretty fair prognosis with this that ranges pretty similarly with most kids.  Some will walk early, some late, some will have difficulty learning, some won't.  That sounds like most kids... some are ahead and some are behind.

Ben and I each submitted blood today so they can look at our #6 chromosomes and see if either of us have this deletion and it just didn't do anything or if this is unique to Natalie.  Like I said, it doesn't really change our plan for her healthcare right now, it just gives us more information on other issues she may have and helps comfort us in knowing that there's nothing that Ben or I did to cause her issues.  




Thursday, February 5, 2009

Shunt Placement Surgery

The surgery went great!

Ben and I had Natalie at the hospital at 5:30 this morning.  We had a lot of waiting around to do while things got lined up, but they took her at 7:30 back to be sedated.  Ben and I kept ourselves occupied in the waiting room and they came and got us right around 9 and said everything went smoothly.  We got to go to the Pediatric Intensive Care Unit right away to see her.  She was still a little bit sedated, but seemed comfortable.  

She has about an inch and a half long C shaped scar about 2 inches behind her ear, and a half inch or so little scar on her belly right below her rib cage.  The shunt is so small, there's barely a bump on her head.  She looks really great.  They shaved almost the whole right side of her head.  She still looks beautiful, though.  The nurses all like to come coo over her.

The neurosurgeon came back this afternoon and looked over her, and he said everything looks great.  I just talked to the nurse at the PICU and she said Natalie ate well tonight and is sleeping soundly.

Lauren got to come to the hospital to visit with Natalie and she was charming everyone.  She had a long conversation with the doctor about dragon tales and dress up and her new shoes.  Lissa crocheted an adorable pink hat for Natalie today.  I think we may ask her to make a lot of little hats for Natalie until her hair grows in.

So.... she's supposed to be released tomorrow morning.  She's scheduled to have a CT scan and an x-ray at 5 am tomorrow and then the neurosurgeon will have to sign off to release her.  

I'm sitting here tonight feeling really relieved that this surgery is over.  And I'm very happily surprised with how little her shunt stands out.  This is one big step that is over and done with and in a few months we'll bring her back for the surgery on her tethered spinal cord and to remove the two tumors.  But we'll handle that when we get to it.  Right now I'm just looking forward to bringing her home and going about our day to day lives for a while.

Wednesday, February 4, 2009

The Big Day

Tomorrow morning is Natalie's shunt placement surgery.  Ben and I have to have her at the hospital at 5:30 am.  She should be in surgery by 7 and the neurosurgeon said it should take about an hour.  I expect everything should go pretty well, there will be three anesthesiologists in the room, and there's going to be a general pediatric surgeon assisting the neurosurgeon tomorrow.  

Ben picked Lissa up from the airport today and she and Natalie and I went shopping at Kohl's while Ben and Lauren went to the park.  We went to Red Robin for dinner tonight and now we're just spending some time relaxing before heading to bed.  

Natalie will spend at least 24 hours in the PICU after her surgery, and as long as she does ok, she should be released on Friday.  Lissa flies back to Albuquerque on Saturday.  I'm hoping we'll be able to go back home on Saturday or Sunday.  Natalie has an appointment for the special baby clinic next Thursday.  They'll have all the different therapists meet with Natalie to do some assessment of her and help us make sure we're doing everything we can to keep her on track.


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