More about the 6Q26 and 6Q27 deletion...

I noticed the other day that someone found this blog by searching for 6Q26 - in other words, Natalie's gene deletion.  She is missing 6Q26 and 6Q27, but I wanted to touch back on this for just a minute because I remember googling for information about her deletion.  I remember that the doctors couldn't tell us much about what to expect for Natalie.  They couldn't tell us how she would develop, if she would ever walk or talk, be able to live normally- and it was a scary time for me as her mother.

I found out about Natalie's hydrocephalus near the 20 week mark of my pregnancy.  The second half of my pregnancy was filled with lots of crying.  There's the idea that you need time to mourn your "perfect" child, and I think I did do that.  Natalie was born by c-section around week 36 of my pregnancy.  She spent some time in the NICU and didn't have her shunt placed until she was more than a month old.  When she was in the NICU, they found that she had a tethered spinal cord and a mass on the end of her coccyx.  These three features together were enough for the geneticist to be curious, so she took a sample to do some testing.  It came back that 6q26 and 6q27 were missing.

Natalie is two and a half years old now.  She walks, she talks, she is absolutely amazing.  She's affectionate and funny.  She has had a shunt placement.  She has had two shunt revisions.  She has had a surgery to de-tether her spinal cord and remove the mass on her coccyx (which turned out to be a benign teratoma).  She has had one surgery to straighten her eyes because she's farsighted and we didn't know it until her eyes crossed.  She wears glasses.  She goes to physical therapy, occupational therapy and speech therapy. 

She didn't sit up on her own until her first birthday (December 3), but she was walking on her own by the end of the next summer.  As of her second birthday, she only said about a dozen words. (A few months of speech therapy later and she's well over a hundred.)  She can feed herself with her fingers, but is still working on using a fork and spoon.  She gets it to her mouth, but like most kids, a lot ends up in her lap or on the floor.

She has seen just about every specialist they can come up with.  She has had studies done of her heart and her bladder.  She has a developmentalist, a neurologist, a neurosurgeon, an ophthalmologist, a urologist- along with her pediatrician and dentist. 

It's not the quietest life, we're busy with her therapy appointments, we have something three days a week.  We were down to seeing her neurosurgeon once a year, but then she had a shunt failure and we're seeing him again this week for a follow up from seeing him in April.  Most everyone else she only has to see once a year, though.

I really don't want this to sound like our life is depressing.  It's a lot of stuff, but it is entirely manageable.  Being at home with Natalie, I never think, "She's SO behind!" and when she reaches milestones, I don't think, "It's about time!  She should have been doing this months ago!"  She is doing things in a very normal way, but on her own timeline.  She works hard, and is just as excited about new things as her sister was.  Her hair grew in over her scar from her shunt replacement, and it's easy to not think about it.  She's just a kid doing kid things.

I tend to be a worrier.  I have memorized the possible signs of shunt failure, and I've seen which signs she exhibits when she has a shunt failure.  I am always keeping an eye out for these things.  I also know what I need to do in the event that she has her first seizure.  I'm sure I'll be terrified, but I know what I need to do. 

It's important to remember to keep small goals and steps.  Really, take things one at a time.  It can be overwhelming.  Ask lots of questions when you are with the doctor.  Find out what kind of shunt your child is getting and why the doctor is picking that type.  Write things down, it's easy to forget when you are overwhelmed with the emotional aspect of things.  Get your child enrolled in your state's Birth to Three program.  There are different names in different places, but you should be able to find it with your pediatrician's help.  And what helped me the most was talking to friends about what I was feeling and what I was going through.  It was a really hard time because it was a giant upset to my life.  I was never going to be the mom of a child with special needs.  Stuff like that never happened to me.  But then, it did happen.  About three years after I found out about the hydrocephalus, we're fine.  We're a happy family.  She's healthy.  She plays with her big sister and irritates her big sister in normal little sister ways. 

I don't know that this will answer any questions of a new parent of a child with this deletion, but I realized I hadn't talked much about it since we were in the heaviness of it while it was happening.  Please feel free to comment and ask questions or even let me know if you'd like to email privately about it.

Gardening, Reading, Driving

Our garden has been doing amazingly well.  I went to Lowe's yesterday and bought some chicken wire and wooden stakes and set up a trellis for the peas.  I also bought a cilantro plant and put it in since I hate buying a big bundle of it at the grocery store only to end up using a few tablespoons of chopped leaves at a time.  This way I can use it as I need it and not waste quite so much.  For our back yard, I bought a jasmine plant and put it in the ground by the patio.  I'm hoping I'll be able to get it to climb up the column on the back porch.  What a great scent to be greeted by every time I open the door!

I finished reading Harry Potter and the Sorcerer's Stone and now I'm on to Dead in the Family, the latest in the Sookie Stackhouse series.  Harry Potter was better than I thought it would be, and I probably will read more in the series, but I'm not in any rush.  If anything, it made me want to watch the movies.  Happy to report, though, that Jen liked Twilight and has already finished New Moon and moved on to Eclipse, as well.  Stephanie Meyer needs to add onto that series already.

This morning I got up before 6 and Natalie and I headed up to Seattle for her checkup with Neurosurgery.  She had an MRI and her doctor said everything looked great and he'd see her again in a year.  That's great news and we'll take it!  It was awful traffic heading up there, but the drive back was easy enough and we were home by one.  I'm feeling exhausted from the day though and I think I'm going to head up to bed and call it a night.

Her Last Day Being Three

Lauren turns four years old tomorrow.  We're taking her to IHOP for breakfast since Ben has to work tomorrow night.  I think I'm looking forward to that as much as she is, if not more.  It's a pretty fun weekend for her with Easter today and her birthday tomorrow, lots of presents and treats and fun.  We're going to have her birthday party at Chuck E. Cheese next weekend.  Lauren is all done with soccer now, she did such a great job this year.  She was by far the smallest kid on her team, but loved playing goalie. Somehow her team only ended up with five kids on it while the other teams in the league all had 10, and even with that huge disadvantage, they won a few of their games.  She got a medal and a certificate at the end of the season and they had a pizza party at the bowling alley after their last game.

Natalie has an evaluation for Occupational Therapy tomorrow.  We'll see if she starts doing regular work with them.  That is for more fine motor skills than the Physical Therapy she does already.  They changed the setting on her shunt when she visited her neurosurgeon a few weeks ago.  They upped the setting to a slightly higher pressure.  She's been doing pretty well with the change, which is good, and in June she'll go back and have another MRI to see how it's going in her head.

I have to get a crown put on my tooth in 10 days.  The dentist thinks I cracked it.  I was in such pain and thankfully they got me in the same day.  I've been doing ok with tylenol and learning to avoid the tooth, I hope the crown does the trick and helps me out.  I always get so nervous about the dentist and every time I go it's awful, then I avoid going and the next time it's bad again.  It's an awful cycle.  I do really need to get better about going regularly.  I just hate it so much and avoiding it only makes it harder on me later.

Ben's been making some really great food lately.  Tonight he made pulled pork and last night chicken caesar salad and bread.  We had strawberry shortcake for dessert both nights.  I made the Pioneer Woman's Hot Cross Buns on Friday and they were really good.  They make a great breakfast.  I didn't realize Hot Cross Buns were an Easter food, but now that I know, I think I'll have to make them every year.

Time Marches On

Has it really been over 10 days since I posted something?  Sheesh.  Time has been flying by around here.  Natalie had her feeding evaluation.  I have to thicken everything she drinks for a while.  I have lots of questions about this, and I'll ask them at her checkup on Wednesday.  She's also been experiencing separation anxiety any time I walk away from her.  She cries and gets really upset, even if I just walk to the trash can to throw a diaper away.  Kind of frustrating, but age appropriate.  She's also getting four more teeth, which will bring her up to twenty!

Lauren's been having lots of fun with soccer.  She likes practice more than the games because they are shorter.  She says her big games are too long, and she gets distracted once she starts getting tired.  She does well playing goalie, though.  She blocked two goals this Saturday.  Her ballet seems to be getting better, too.  I just went this morning and signed her up for her April class.  She sometimes gets a little bit too chatty in class, but last Friday was observation day and it looked like she was paying attention and didn't get the giggles too much.

Ben's night schedule is finally done.  It was more exhausting for me than I thought it would be.  He's off today and has been working on my car, something about a steering column bearing, I think.  I'm not trying to learn about it, I trust him to do it.  Besides, I'm much too busy staying warm in the house to go hang out in the garage.

I'm thinking I'm going to host a brunch for some new friends.  I'm not really sure what to make, though.  I've been browsing through the Martha Stewart website and Tasty Kitchen for recipes.  Any suggestions?  Hopefully I'll get to host it as a kid-free event and get some mommy alone time.

The daffodils in the front yard have bloomed!  I think spring is coming, and I'm very happy about it!

Soccer and New Foods and Springtime Gardening

Lauren started soccer two weeks ago.  It's so adorable.  The kids are all so motivated and active and have no idea whatsoever about what they're supposed to be doing.  I love it.  It's fun to watch and she gets to run around like crazy and wear herself out, and that's the whole point of it really.  She has two practices a week and her first game was last Saturday.  Her team is the Hurricanes and they won!

Natalie is crawling around EVERYWHERE now, pulling herself up to stand, and is starting to cruise the furniture with a purpose.  I asked her home therapist to start helping us work on baby sign language with her since she still only says "mama".  Her eating is great, though, she's been eating pretty much everything I've given her.  Bell peppers, beans, avocado, cantaloupe, even lasagna last night for dinner.  By the time she has her feeding evaluation on the 24th, she won't need it anymore.

I planted strawberry seeds and some flower seeds in little pots and put them in the kitchen window.  The strawberries sprouted, but now they aren't doing anything.  I'm not sure what went wrong there.  The flowers are doing well, though.  I wish I could remember which kind I planted.  Hahaha.  It feels nice to have a seed I planted actually grow into something.  My hydrangeas outside are starting to get new green life, and the daffodil and tulip bulbs I had Ben plant are all up and I think I see the start of a few blooms thinking about growing.

I haven't done much lately craft or sewing-wise, which is a shame.  It feels like we've suddenly become very busy with soccer, story time, ballet, and physical therapy.  Story time is taking a three week break, though so that's one more day a week we have off.  We are also getting over having mild colds and Natalie had a bad diaper rash/yeast infection that's finally clearing up thanks to a trip to urgent care and a prescription for some cream.  Ben's current schedule is throwing things off a bit, too, but we only have another ten days of that and then we can get back to normal.  And last night I ordered myself Cath Kidston's "Make" (that I mentioned in my last post) so I'm excited to get that and get inspired again.

Both Girls Are Asleep!

It's 4:30 in the afternoon (even though it feels like late evening because it's already getting dark, thankyouverymuch, northern hemisphere) and both girls area totally asleep.

Lauren has ballet on Friday mornings at 9 am, which means we have to leave here by 8:40 so we can get over there and get her out of her rain boots and coat and into ballet shoes, and to leave here by 8:40, I have to wake up at 7:30, get Lauren up, fed, and both of us showered.

I wish I had the who cares attitude to just throw my hair in a headband and wear a hoodie to go to ballet, with only a freshly scrubbed face, but I don't. I need to be showered and make-upped. And I don't think it's fair to not get Lauren ready because I'm feeling lazy. So we get up early.

Unfortunately, this kind of makes her a cranky beast for most of Friday. I had her in her bed watching a movie for a "rest" at 1:15, but at 1:30, Natalie's home therapist and services coordinator got here for an appointment, so she was up and downstairs to see what was going on. And to not leave me alone. And was really really making things difficult. But that's ok. She's in bed now. She just went upstairs and laid down and will be an angel child when she wakes up.

Natalie was playing on the ground and just rolled onto her belly, pulled her knees in and her butt up in the air and went to sleep. I remember sleeping like that. I wonder why that position is so comfortable only until about 5 years old?

We went to Michael's yesterday to get some stuff for Lauren so she could decorate her lego castle. I couldn't help but get stuff for myself, too. I love all that Martha Stewart craft stuff. I picked up a cute bird and owl stamp set and a glue stamp pad and silver glitter. And now I want to go back and get a bunch of colors of stamp pads and more glitter. And more stamps. Not that I have anything planned, I just want to be prepared, you know, for that day when I need to host a last minute stamping and crafting party. Or when someone comes to my door demanding to know where their birthday card is, and I just be like, oh, wait, hold on, and whip something together in a matter of minutes. (note: not likely to happen. Ever. But at least I'm prepared.)

I'm getting excited for my Cookie Exchange party. I think I decided I'm going to make Chocolate Chip Filled Melting Moments which is a recipe I've made before out of "The Essential Chocolate Chip Cookbook" that Jayna got me for my birthday. They are delicious. I know they will take some work, and I'll have to 4x the recipe, but that's ok, they are worth it, and I want something special for the exchange. Right now I have 4 people who have said they are going to come, but I'm hoping I can get a few more people, too. I'm really excited for the holidays this year. Especially since last year was so crazy. But first, I get to focus on Natalie's first birthday. Yay! We're going to have to get a good party together for the little girl. She's amazing and she deserves it.

Brrr!

Lauren had her first ballet class yesterday morning. She really liked it. Her class is for ages 3-6, but it's a Friday morning so it's mostly younger kids that aren't in school. She's still the smallest in her class. It's so cute. They're working on first and second position and a plie along with a couple other things. She seemed to like it. And this class is more structured than her creative movement dance class, which is good. She needs to learn how to follow directions and get in line and stuff like that.

Natalie went to her new eye doctor here. He is going to do surgery on her eyes to straighten them out. I'm waiting for them to call me with the date, but they said it'd be a Wednesday in December, most likely. She's also been referred to the new Physical Therapist where she'll also get speech therapy. I'm waiting for them to call me, too.

Ben has been flying and teaching at work. Last night he was on duty and worked from 7 pm until 9 this morning. They didn't tell him he'd be working overnight until 3 yesterday, though, so it was a long night for him. He's been asleep most of the day.

I've been working on a couple crafts for the girls. I also picked up a great cooking magazine and have been making recipes out of it. I really like a white bean and turkey chili that I've made twice. It has been cold and rainy and really PNW up here. We're counting down to Thanksgiving and Natalie's first birthday. And Lauren has already been working on an ever growing Christmas list.

Happy Birthday, Ben!

Happy Birthday to Ben!

Ben and Jon caught nine crab this weekend and had quite a feast on Sunday. We all went to the pumpkin patch on Saturday and got three pumpkins to carve on Halloween. Jon brought a fresh salmon fillet to the house and cooked it on a cedar plank for Saturday's dinner. I did have a bite. Lauren tried it and liked it. She said it was yummy and ate quite a bit of it.

Natalie had her big developmental clinic on Friday and they didn't really say anything new. They're going to do some tests on her bladder and kidneys just because we haven't done studies on them before. Eventually they want to do a study (probably by ultrasound) of her heart, too. They just want to make sure they check everything so if she has any problems we catch them soon. We're getting a new referral for her physical therapy so she can go to a pediatric physical therapist where she'll get PT, OT and Speech Therapy. It should be more comprehensive, and she'll have therapists who deal with kids all the time. This Thursday I'm taking her up to Seattle Children's Hospital again so she can have some tests done with the hematologists to see if they have any input or if we can get a better idea about what is going on with the clot in her brain. Then next week she goes to see the ophthalmologist, which will be the first appointment she's had with them since we got here. I'm anticipating surgery on her eyes, and hope they can do it before Ben deploys in the spring.

Lauren is going to be a candy corn for Halloween. I picked up tiger ears and a tail for myself and Natalie is going to wear the chili pepper costume that Lauren wore for her first Halloween. I picked up a double jogging stroller on Craigslist for $40 last week and Jon did a quick fix up on the brakes for me. I can take the girls out more easily now. The weather finally turned and it's been colder and more overcast. We've had a few days in the 50s now.

Lauren starts ballet next Friday and I'm still considering putting her in part day preschool. She said she'd like to go, so I'm going to see what her options are.

Natalie's First October

Natalie is 10 months old. Lauren is 3 and a HALF! When did this happen?

Natalie is doing well. I took her to her first physical therapy appointment since we moved here today. We know she's behind, and that was nothing new to hear. The physical therapist did say she's doing well and is very strong. We're going to work on sitting. We also are going to get out the yoga ball and do some exercises on it and have her on her belly and reaching for things. He thinks she's close to crawling, it will just depend on how long it takes for her to make the connection about moving all the right things at the right time. He told us what to do at home and we go back on the 20th for another appointment.

While we were at PT, Lauren got to go to hourly daycare on base. They said she did really well. But she started crying when I got back and saying, "I don't want you to leave." Tonight at dinner, she picked a bell pepper out of her food and said, "Get out of here, pickle!" and I told her it was a bell pepper and she should try it. She said, "I don't like bell peppers. I'm just a kid!" She's so funny. I signed her up for ballet, she'll start going on Fridays in November, and I'll keep her in it as long as she likes it.

Ben has started a more regular work schedule now. The unit has come back from some training they were doing in California.

This weekend we went and checked out the Point Defiance Zoo & Aquarium. It isn't that far of a drive from us. It was really beautiful and a nice little zoo. They had a great play area that Lauren had fun in, and it was a pretty nice day, even if it was a bit cold. Next time I'll bring a jacket. I still want to go check out the Seattle Center and the Aquarium up there. I'm also starting to keep my eyes out for a great pumpkin patch and maybe even an apple festival. I guess we missed one last weekend. Bummer.

Ben's thirtieth birthday is coming up soon. He wanted the Playstation 3, so he bought it already. Saves me some time. Hee hee. Going to see if he wants to do a party or go out to dinner or anything. It's hard since we just moved here. If we had all stayed in Texas I would have known exactly who to invite over for a party.

Picture Perfect

A few weeks ago, Lissa bought a red, white and blue quilt for her new picnic blanket. She had mentioned that she didn't like that the back was white. I suggested tracing the kids on the back with fabric markers. She suggested that might look like a crime scene, so I said we could just trace their hands. This Sunday we had a BBQ and while everyone was there, that's what we did. We took one corner and traced everyone's right hand (Ben will add his when he gets back in a few weeks) and put the month and year. The plan is to retrace the kids every year when we're all together to make a cool keepsake.

When I bought the fabric markers, I also bought t-shirts for the girls to decorate for themselves. Mia drew pancakes on hers, and traced her own hand, as well as Sarah's. Lauren said she drew a parking lot. She also drew our cat, Bear, in the parking lot, Daddy's car, although she made it purple, and a train. They came out pretty cute.

Abby and I made Luke and Natalie's t-shirts. Although not as imaginative, I think they still came out pretty cute.

This week the new WalMart opened in Albuquerque. It's between Lissa and Abby's houses, so it's the perfect place to stop to pick something up on the way home. We went twice on opening day. They had a mariachi band playing in the produce section.

I also went to Aveda this week to get my hair cut. It's a pretty nice cut, I'm happy with it. While I was in the waiting area, I picked up a magazine and found an article about 'summer camps for adults'. There was one in Santa Fe that does photography workshops, from day classes to week-long workshops. The idea of going is just so exciting. Unfortunately, I can't afford any of the classes. But it does make me want to pull out my camera and take as many pictures as I can and try out new things. I figured out how to change the ISO setting on my camera to be able to use different aperture and shutter speed combinations. I turned on all the lights and lamps in my bedroom one evening and got some cute shots of the girls. I really like this one of Natalie because you can see her bottom teeth:

That one may end up being printed out and framed.

Today I made two little toys for Natalie from 6 different fabric fat quarters I picked up at JoAnn. I got different black and white prints and two with some red in them. I got batting and bells to stuff them with. They came out pretty cute. One is 5"x5"x5", and the other is 3"x3"x3". I have so much of the fabric left over I could make her a bunch more, so I'm going to see what else I can come up with to make for her.

Tomorrow is my last day to train for the next 5K. I can pick up my race packet tomorrow, and Lauren's stuff, too. She's going to be so cute! I can't wait for Sunday evening!

Training, Biopark, Ben in Bama

Natalie had her 6 month check up last week.  She's 15 pounds, 10 ounces and 26 inches long.  She took her shots ok, cried at first but settled down.  She has an eye appointment next week for a follow up to see how her patch therapy is working.  I really can't tell if it's working or not.  Her right eye still seems to not point the same way as her left eye.  But we're only a month or two into this therapy and I think it's supposed to go on for a year.  I hope it does work, I'd rather she didn't have another surgery.

Lauren is doing great.  She has been cracking me up every day.  Last week we went to the concert at the botanical garden and she went with Grandskips to get a stuffed animal.  She picked out a snake.

  

Definitely not my favorite toy, but she thinks it is great.  The biopark concert was fun, we had a picnic dinner and let the kids run around and dance and be wild.

The girls and I all seem to be hit with some allergies this morning.  I'm hoping to get over it soon.  It's hard to keep running when you can't breathe.  I started week 4 on the Couch to 5K plan last night.  Five minute run intervals!  Hopefully I'll do better with it today and tomorrow.  Next week comes 8 minute run intervals.  I can't believe I'm running!  I'm really looking forward to the 5K, though.  And a big 'WAY TO GO!' to Jayna for doing a 5K and a 10K!  I'm impressed!

Ben called this morning.  He had two tests.  One was on aerodynamics and I forget what the other one was on.  He had been stressing out studying for them both last night, but he passed them this morning.  He has a 3 hour simulator period today and tomorrow morning his sim period is at 4:30 am.  Sounds like he's going to have a lot of early mornings.  They have flight line at 5:30 am through the IP Course.  He said it's really hot and humid in Alabama and I am feeling pretty happy that I'm in Albuquerque instead right now.

The girls are both doing well besides the allergies.  Lauren is having so much fun playing with Mia.  I got all three girls matching tops the other day.  

They were pretty cute wearing them and we got a few good shots of them.  I should have gotten a few of just Lauren and Natalie, but I didn't think about it until later.  I can always do more later, I guess.

I've Started Training

The Cherry Garcia 5K is just 3 1/2 weeks away.   I am in training mode.  I'm doing the Couch to 5K program (which can be found on www.coolrunnings.com) and I'm starting on week 2.  I have one more day tomorrow, then I'll start on week 3 on Friday.  I'm really hoping that I'll start to get used to this altitude soon, but I'm also happy to see that I've already started improving.

Ben is already at Fort Rucker.  Today he's doing in-processing and school starts tomorrow.

Natalie has her first tooth!  I saw a bottom tooth all the way through this afternoon.

Lauren has been doing great.  She's so busy all the time, and so funny.

I guess that's about all for right now.

Splash!

On Saturday we all got together for my friend's son's second birthday party. They rented a giant inflatable water slide and everyone got in on the action. I think the adults made just as many trips on it as the kids (if not more). We all had a blast.

Sunday was Mother's Day and it was pretty quiet here. Ben worked on my car for a little while during the day and we had a nice dinner. On Monday evening I drove back to San Antonio with Natalie. She had a CT scan Tuesday morning because I was concerned about a little fluid build up she had. Dr. M said everything looked great and that her CT scan showed "dramatic improvement" over the CT scan from last month. He showed me the two scans and I was able to see the difference, too.

Yesterday Natalie had her last PT session with her PT therapist and she was impressed with Natalie's progress. She said she thought that at the rate Natalie is improving, she won't need PT anymore by the end of the summer. That's great news, and we'll have to have her checked out once we get up to Washington.

This weekend Ben and I have to get our stuff together for the summer. On Monday I'm taking the girls down to San Antonio and picking up Lissa at the airport. Natalie has a few appointments on Tuesday again and hopefully we'll be able to get on the road Tuesday afternoon to head to Albuquerque. Ben will stay at the house to oversee the packing and loading of all of our stuff.

The lady who put an offer on our house officially rejected our counter offer/withdrew her offer. So the house is still on the market for now. We're hoping to sell it, but we're going to put it on the rental market as of June 15th. Maybe another year of paying the mortgage and waiting for the housing market to stabilize will work out for us.

I'm getting really excited to head to Albuquerque next week, it's going to be a fun summer!

This Week

This week started out with my birthday on Sunday. Ben made breakfast and we spent most of the day playing in the front yard. Lauren got a t-ball set and has been learning how to use it. She can hit the ball, which is pretty amazing since she closes her eyes every time. :) She has fun chasing and throwing the ball as much as hitting it.

Natalie and I sat under the shade of the tree while Ben and Lauren played. Some neighbor kids from up the street came down and got in on the action, too. They all had popsicles before we called it an afternoon.

We did a quiet dinner at home on Sunday. On Monday night we went to my friend Mandy's house. Her birthday is May 5, so she invited our friends over for a joint birthday celebration. We had lots of good food and cupcakes for dessert. Here's a picture of me and Mandy.

On Tuesday we had Tumblers as usual, and then lunch as usual. On Wednesday, Natalie had PT and did really well. That night we drove down to Austin to visit Ben's cousin, Jason, who was in town from New York. They were thinking it had been about fifteen years since they had seen each other last. We went to dinner and then took Lauren swimming at his hotel and just hung out most of the night. We stayed up way too late.

We got an offer on the house last week. It was really low, so we countered it, and we're waiting to hear back. We had another showing yesterday that we haven't heard about. I hope things happen soon.

On Sunday night I emailed Natalie's Neurosurgeon about some fluid that I've been seeing build up under her scar again. He called me back that night and she's going to go in this Tuesday for another CT scan and a visit with him. If she needs another surgery, she'll probably have it on Thursday. I'm hoping she doesn't, but there is a chance. Monday night I'll drive down to San Antonio and if she doesn't need surgery I'll come back on Tuesday. If she does, I'll come back on Friday and pack Saturday and Sunday, and then we have to go back to San Antonio on Monday either way. Natalie has appointments all day long on Tuesday the 19th and once we're done, we drive straight to Albuquerque for the summer. I have just over a week left in this house. I'm really going to miss it.

But, I'm also looking forward to spending the summer in Albuquerque. Sarah and I are signing up to do 2 5Ks this summer. One is the Cherry Garcia 5K and the other is the Chunky Monkey 5K. I don't really know why I want to do it since I hate running so much, but I think it will be fun, and I'll feel like I really accomplished something. My goal for the first one is easy, I just want to finish, and for the second one, I just want to improve my time. I'm not going to knock myself out over it.

Natalie had a big accomplishment today. She rolled onto her stomach (which she's been doing for a while) and then lifted her head all the way up! That's such a milestone for her, and a great improvement and I'm so proud!

It's MAY!

This month comes with a whole lot of stuff to do! On the fun side, I have my birthday, Mother's Day, and our 9th anniversary. We also have Natalie's last (and really long) appointment in San Antonio, a house to pack up, two cars to load, and moving out to do. That's on top of hoping the house sells.

We officially dropped the price of our house yesterday. It was a little painful to do it, but we need to bring in more showings if we want to get an offer. Please say a little prayer that the next owner makes an offer this week or next week.

Natalie's eye appointment went well. Dr. R thinks now that her vision is ok but that she's showing a preference for her left eye and that is why her right eye is weak. He started her on eye patch therapy. She has to wear an eye patch 2 hours a day, 5 days a week for probably the next year. She doesn't love it, but she does tolerate it ok, and two hours isn't that long. She has also shown some really good strides with her PT. Her head is stabilizing so much, and she even lifted it when she was on her belly on Wednesday! That was the first time and it was great to see! We have some homework for her PT and we see the PT Therapist next Wednesday.

And here is my favorite recent picture of Natalie because I actually caught her smiling!!

Isn't that a great grin?!

I've been working on Snapfish making photo books. First is "Freakin' Delicious" which is our family cookbook. As of right now, I'm just waiting on two recipes and then we'll be able to order them. It's become a hybrid cookbook/photo album, and that's really fun. It's going to be totally cute. The other one is a book full of the old pictures I scanned in last year at Mom's house. Lots of my baby pictures and pictures of my parents and a few of my sisters. That will be really nice to have in print.

Sunday is my birthday, and we don't have anything planned for that day. Monday we're going to go to Mandy's house and grill. Her birthday is Tuesday, so it's a joint birthday celebration. I think we're going to have cupcakes and just a really good time.

Next Wednesday or Thursday we might get to meet up with Ben's cousin, Jason. He's going to Austin and we're going to drive down to see him. I didn't get to meet him at the big family party in Albuquerque last fall.

Lots to keep us busy over the next three weeks! Looking forward to the bee on May 25th!

Easter and her Follow-Up

Easter morning was a pretty good day. I woke up with my sinuses really congested from all the pollen in the air - I've never had allergies like this until we moved here. It took us a little while to get going that day because we were all feeling like our heads were foggy. Lauren dove right into her Easter basket and then waited not-so-patiently for Natalie to wake up so she could show her what the Easter bunny brought for her, too. Here's Natalie, still in bed, and Lauren showing her a wrist rattle and rattle socks set.

Once we all got up and going, we headed to Katherine's house for brunch and an egg hunt. Here's Natalie all dressed in pink with her new wrist rattle. She knows how to accessorize already, just like her big sister.

She was feeling pretty good. And here's Lauren in her dress. It had a castle drawn on it, something that looked like it was out of the French countryside. Lauren called it Cinderella's castle.

The kids had way too much fun with the hunt and were all really good. My job was to take pictures, but between someone else's memory card being full and then my batteries dying (hey, it was a long week for my camera in San Antonio) I didn't get a whole lot. Ben helped Lauren look for eggs. The day started out kind of chilly, but was in the mid to high 80s before too long.

Things wrapped up around 4 and we headed home.

On Monday, Natalie and I headed back to San Antonio. She had a CT scan Tuesday morning and then we met with her Neurosurgeon for her follow up. It was great news all around. Everything healed up much better this time. The CT scan looked great and he said he thinks he sees some Cortical Mantle forming! There aren't enough exclamation points to get across how happy I am about that, so I'll just use the one, but know that even now, retyping it, I'm jumping up and down inside. We've stayed really hopeful for her long term prognosis and to know that her brain is increasing in size is WONDERFUL, WONDERFUL news. The week after surgery she was already vocalizing more, and I think I've even noticed an improvement in her eyes - they don't seem to go lazy as often. I hope that now that the pressure has stabilized, it will relieve some pressure off her optic nerve and maybe her vision will improve and the muscles will follow.

She had another appointment with Early Childhood Intervention this week and has another this Tuesday. Her therapy is coming along. There's no magic to it, we're just doing lots of different positions to help encourage her to move and get her muscles going.

Our house had two showings this week. Ben restained the deck today and trimmed branches from the trees in the back. Hopefully that will help whenever the next showing is. I'm trying to remain positive about it all, we knew going into this it could be 3 or 4 months, but it's easy to get discouraged. The hardest part is that our realtor is telling us there isn't anything we need to do to improve the property... it's basically the best it can be, but that still isn't bringing in offers. Frustrating!

Lauren's Birthday Extravaganza Week

Let me start where I left off. Natalie was released from the hospital the day after her surgery and we came home the next day (Saturday). Sunday was Lauren's birthday, but we didn't want to have a bunch of people come to the house in case there was a showing, and we couldn't have anything outside because there was really windy, bad weather. We decided just to do something small at home.

We woke up and had chocolate chip pancakes with whipped cream and sprinkles.

(Which Lauren helped to prepare:)

Then she opened presents from Mommy and Daddy and from Natalie. Then it was time to shower and get dressed in her special birthday dress that Ema sent.

We were off for a birthday girl lunch at Chili's. She got 'snack n cheese' and chocolate milk and then a scoop of vanilla ice cream and the waiters sang a happy birthday song. We thought she'd love it, but she hid against Ben the whole time. After that, we went to the mall to walk around and came home. She was so worn out that she fell asleep on the couch a bit before 7. We hadn't even had dinner or cake yet!

The next day when Ben got home from work we did her birthday song and cake. She picked out a pink cake with white frosting and helped me make it. She even helped put the sprinkles on the sides of the cake. She's going to be quite a baker.

Tuesday we got the house ready to go and headed down to San Antonio. We had dinner and picked up Grandma Lissa at the airport. The next morning we got up and ready and went to the Rainforest Cafe on the Riverwalk for lunch. Lauren liked the butterflies, but did not like the snake when we walked in, or the monkey hanging over our table.

She had to jump in someone's lap when he started making noise, and when the lightning storm came through the rainforest.

After lunch we were off to the San Antonio Botanical Garden.

One of her recent favorite things to do is pick flowers, so we thought this would be a place she'd really enjoy. And she did. Natalie liked it, too. She got to be walked around and there were lots of things for her to look at.

Someday when she's bigger, maybe Daddy can do this with Natalie, too. Lauren sure enjoyed it!

We didn't spend too long at the Botanical Garden. Just long enough to walk through everything. The weather was perfect, not too hot and not cold.

She still couldn't leave without picking at least one flower, though. :)

We went back to the house and had cake and presents. This was the cake she picked out and it was hers to dig into.

The next day we were off to the San Antonio Zoo. .

Parents magazine just named it as one of the top 10 zoos in the country, and specifically good for kids under 5. I think Lauren agrees.

She got to feed and brush the goats at the petting zoo.

Then it was time for a hot dog before she hit the beach.

She loves that beach. She could spend all day there. Who cares that the water was icy cold? Not her.

The next day was Sea World. She got to watch the dolphins. She kept yelling, "Come here dolphin so I can pet you!"

But they weren't listening.

She rode her first water ride, the "Texas Splashdown" which has two good drops and lots of water. She loved it. She was good in the 45 minute line to get on the ride. She got to watch Shamu's show and the Sea Lion show, see penguins and the Clydesdale horses and see more flowers.

It was an exhausting week, but lots of fun. Lissa flew back on Saturday, and we drove home after dropping her off at the airport. On Sunday we went to a friend's house to do an Easter egg hunt and have brunch.

Looooooooooong Day

I had Natalie at the hospital at 5:30 am and I am so exhausted already now a little after 6 pm.  It was the same pre-op routine we've been through twice before- a set of vitals, a lot of paperwork in the first room, then to the pre-op waiting room, more paperwork, more verification of who (Natalie), what (shunt revision surgery), where (her head, duh), and why (previous shunt wasn't working correctly).  At 7:30 they took her back to begin surgery.  I took that opportunity to have some breakfast downstairs in the cafeteria and get some milk up to the PICU for her overnight stay.  A little after 10:00 her neurosurgeon came in and got me.  She did really well through the surgery and she was out.  He replaced the shunt and the catheter going into her brain.  The previous one had worn away the brain surrounding the catheter and she had a 5mm (or so) hole where fluid was just leaking out freely every time there was a pressure increase.  He put something over that and sealed up the hole and created a new path for the new catheter and sealed it since not sealing it last time (which is normal) didn't work for her, obviously.  He also tacked down her skin and tried to rough up the area so that it would need to scar down and will hopefully heal back the way it is supposed to be instead of the way it was.

She already had the tube out by the time I went over to the PICU.  She ate a bit from a bottle and did well with that.  We had to leave her flat on the bed for a while.  The neurosurgeon came in and saw her this afternoon and gave his ok for me to pick her up.  I held her and fed her just before I left, she threw up all over me, but I think she was in a bit of pain and the last of her pain medicine had worn off.  The nurse gave her some tylenol and was going to let her calm down a bit before she tried to feed her again.  I am going to have some dinner and then head back to the hospital tonight for a little while.  I need to be home before it gets too late tonight, though, because I am just beat.

He ordered a CT scan on her, and she'll have that tomorrow morning.  As long as everything looks ok with it, she'll be coming home tomorrow.  We'll be back at our house before Lauren's birthday on Sunday!  Yay!

Back at Home

Saturday morning they told us that Natalie could come home or stay if we felt like it. We opted to have her stay one more night just to heal a little bit more before we took her home. She has been doing great. She gets a little bit of tylenol every 6 hours and is healing really well. I went to the hospital to pick her up bright and early and we came home Sunday afternoon.

Lauren had a pretty fun time while we were there. Ben bought a little inflatable pool to put up in Victor's back yard and he got her some bubbles. She had so much fun chasing them around the back yard. Here she is standing in her pool. I can only assume she's pretending to be a flamingo:

Ben and I enjoyed the nice weather and sat out and played cribbage. Lauren had to get in on the action and I think Ben is teaching her strategy already. (Move your piece when no one is looking.) Ha!

The house was shown a few times while we were gone. We still haven't heard an offer yet. It's hard living in the house knowing we need to have it ready to show at any time. I feel like I can't start any projects and I'm just waiting around in a house that has to stay clean. I guess I should get used to it, though. The house has only been on the market for a week and a half and it may take a while to sell. The feedback has been positive so far, but like I said, still no offers and that's the only thing that matters right now.

Lauren's birthday is coming up in less than two weeks. We're going to go down to San Antonio the week following her birthday and do Sea World and maybe the zoo. It will be nice to go down there and get to do something other than spend the day at the hospital.

Day After Surgery

Natalie's surgery went great.  She lost very little blood when they removed the teratoma and they were able to release her spinal cord and examine the cysts.  He thinks the cysts are benign and the teratoma was sent off to pathology.  While she was sedated he also tapped her shunt and confirmed that it is working and drained the area under her skin where some fluid was building up and wrapped her head in an effort to get the skin to heal back down.

I stayed at the hospital until 7:45 last night.  They ran her blood after surgery and her hemoglobin levels were low, so they gave her some blood to raise those levels before they took her breathing tube out.  She was stable last night when I called, but had thrown up after they tried feeding her.  She is moving her legs and toes which confirms that they didn't damage any nerves during surgery.

They said she'd be out Saturday at the very earliest, but I'm still going to plan on Monday just so I'm not disappointed if it isn't earlier.

As for the house, the same couple who had a showing on Wednesday went back yesterday for another showing.  Word is they LOVE the house, but they still haven't placed an offer yet, so we'll see.