Monday, January 7, 2013

Welcome 2013

It feels so weird to think of another year come and gone.  Even though it's been three years since the start of the baby drama, it still feels like it was yesterday.  My way of dealing with it has become to completely shut down and pretend like it never happened.  Like today for instance.  My sis-in-law has had complications with her pregnancy starting around 28 weeks that triggered some fairly bad anxiety attacks in me.  Yes, it's still habit until the person I care about is safely out of the woods with their pregnancy.

Anyways, her complications led to a delivery today at 32 weeks and 4 days.  Even though the circumstances around the delivery are scary, mom and baby seem to be doing amazingly well.  My sweet niece is only 7 oz. bigger than Little Miss was, but to see her looking so miraculously  healthy you would think she was a full term baby-until you see something to put her size into perspective. Hearing how well she is doing is making me really face just how sick our miracle baby was, and I don't want to deal with it just yet.  So I shut down completely and became a robot for the day.  Except a robot would never eat the way I have been today.

I pray things continue to progress as well as they have been.

Christmas was crazy and chaotic this season, but fun.  My sister and her family flew in and my parents drove and we all fit into our house for 10 days for a real cousin Christmas just like I had growing up and always wanted my kids to experience.  Our kids went from phone buddies to inseparable friends.  Even Molly and Big Baby took a break from the screaming and meltdowns.

Molly also decided to switch things up on us again.  She came down with a simple cold on the 19th.  By the 21st she began dumping.  Then it got worse and worse.  My poor sister was thrown into the fire of short gut reality in a way I'm guessing she would rather not experience.  By the day after Christmas I had to take her to the doctor.  His diagnosis is that her stomach is able to process mucus now (which is an improvement over the rejection and vomiting of it last year), but her intestines can't, so they just dump everything out.  Her intestines were rumbling so loud it made my heart sad.  The doctor gave us a deadline of Saturday to get it under control or she would have to be admitted.  Thankfully, with priesthood blessings, lots of pedialyte, and some children's immodium, we got it enough under control that didn't happen.

It has put us back in a lock down position though.  She lost over 2 lbs in four days-weight she didn't really have to lose.  With all the nasty crap that is going around, I just don't want to risk it.  So it's a huge blessing that our basement is finished and we have lots of things to do around the house this winter.

To add some diversity, our oldest niece got engaged right before Christmas, then surprised us all by setting the date for February 1st!  The entire family is now in the whirlwind of dresses, flowers, music, and decor.  It seems like it's all coming together, and our kids are so excited to be a part of it (as servers/clearers/helpers).  We just hope and pray they know what they're getting in to.

With 2013 starting off with such a bang, I'm a little nervous to see what the year will bring.  Hopefully it's a fun adventure by the end!

Happy New Year!

Saturday, December 15, 2012

Still hanging around

There have been many attempts to write something down the past six months, but honestly my fear of other people reading my thoughts stopped me.  This year has been quite the whirlwind, and full of so many ups and downs.  I'm still not doing very well in the sanity department.  I could really use a visit with my therapist and some medication, but both of those things require me going somewhere during the day without children.  And that just isn't doable so far. 

Anyways, I really wanted to jot down some Molly updates and thoughts.  She has had an incredible year, full of so much progress.  She started walking the beginning of September.  After that, her vocabulary exploded.  It really felt like she was 'normal', right up until I filled out the stupid questionnaire at the pediatrician's office for her 2 year checkup.  For some reason, it really made me feel like crap.  Even though I am very aware of her delays, I somehow forget until I see in black and white what she should be doing.

But I digress. 

The past month brought some bigger changes for Molly.  One is that she was evaluated for speech therapy and qualified for it.  Part of me is glad she is getting the help she needs to make sure any delays are minimized.  But part of me is heartbroken all over again.  When the therapist was doing the evaluation, she told me that she hears a slight lisp most likely caused by the brain damage (I'm finally to the point that I can call it a stroke, but I still can't make myself contact the head specialist who will give her a cerebral palsy diagnosis).  For some reason, this hit me super hard.  I don't know why, but in all my thoughts about her nerve damage, it never occurred to me that it would extent to her head as well.  Guess I'm naive or compartmentalizing or something.

This brings me to the second big change-the opthalmologist has decided she needs glasses.  Her eyesight isn't all that bad, but her left eye is crossing.  She is thinking it is a muscle issue, so we are trying glasses out before going to surgery to correct it.  Tonight while talking to my sis-in-law about it, it clicked that the eye with the problems is on the side of the face that has the nerve damage.  Up until that moment, I just told myself it's been genetics at play, but now I question that assumption.

Going shopping for the glasses was pretty hilarious though.  Little Miss wouldn't try on anything but red frames with no nose pads.  If we tried to get her to put something else on, she would grab the frames, scream at us, and throw them on the floor.  So now she has the brightest red glasses I've ever seen.  And they look so cute on her and she is soooooo proud to wear them (for 60 seconds at least).  I love the strength of her personality, and it cracks me up to see wear she asserts herself.

Stomach wise, she had a scare in July that almost landed her in the hospital, but other than that, she's been great.  She still has her days and her moments, but the delays from the brain damage are definitely more pressing anymore.

So many ideas are going through my head right now, but none of them are making any sense and it's getting pretty late.  If anyone still visits this little blog, I hope you have a very Merry Christmas.

Sunday, June 10, 2012

Highs and Lows

I have really struggled this past month.  Exercise hasn't happened at all, and I guess I didn't realize how much it would affect me.  I think I've spent the majority of the time wishing I could take a break from myself.  This past week I hit a bad low.  Bad enough that I realized I probably needed to go back on medication for depression again if things didn't change immediately.  My kids have not had an easy time of dealing with mom, and we have not been having any fun. 

On Friday I decided to do the opposite of pretty much every impulse I had for the day, especially in regards to getting outside.  It ended up being a fairly crazy day.  Molly had some huge breakthroughs in therapy (she is starting to answer yes or no questions appropriately on occasion!!!!), I fit in an errand that resulted in witnesses a psycho crash into a car and take off in the parking lot, and I bit the bullet.  I finally attempted the pool with all five children by myself.  This is really huge for me on several levels.  We had a good time and it wasn't as bad as I thought it would be.  Since we were living it up, I even let the kids choose pizza from little caeser's for dinner.  It was a MUCH needed day for my psyche.

After the kids settled in for a slumber party in the basement, I started watching random stuff while waiting for the hubby to get home from a guy's night to see Prometheus.  Then he called and said he was trying to get his friend to the hospital in time for his wife's emergency c-section.  I didn't handle the news very well, as I had spoken to the wife a few hours earlier about the pregnancy and convinced her to call her doctor with her concerns since it was the start of the weekend(she was 31 weeks).  At that point I completely lost it.  As in I think I've experienced my first panic attack. 

Needless to say it was a very long night.  Adam finally got home around 1 am, after getting the husband there literally in the nick of time (they were making the incision as he walked into the OR).  Things are not ok with the baby, but they are getting hopefully more stable.  Yesterday was spent battling a massive migraine and exhaustion while trying to through a baby shower for another friend. In many ways, I'm so grateful for the distraction of running the shower, because I'm having so many flashbacks and fears for our friends, but I know there's nothing I can do, but pray for everyone involved.

While it seems like this would make things worse for me, it's actually getting me back to where I want to be.  I have someone else's needs that are making me get out of my head and making it impossible to dwell on all the make believe issues I've been so upset over the past month.  It's also reminding me all over again how precious every day is with my family, and more days need to be fun.

I also had a good high yesterday (perfect timing) at the baby shower.  There was a guy named Dale there that truly left an impression on me.  I must admit that I've never felt so at ease talking with a new person before.  Everything about him was so incredibly genuine.  I felt like even though we couldn't be more different from each other (me the psycho mom of 5 with no sense of style or design and him the gay fabulously dressed personal organizer and interior designer), it was the most interesting and comfortable conversation I've had in a long time.  I talked to Adam about having him come out and help me with our house as we are in the furniture and decorating phase of the basement, and he loves the idea.  He is so completely at peace with himself and his abilities and wants to give that to the people he's around.  This probably sounds crazy, but he just really impressed me and wish I could be like him with other people around me. 

Anywho, that's the culmination of the past month.  Summer is here, there's way too much going on, and I need to find a way to stay sane.  And please, please, please, say a prayer for our friend's baby...

Thursday, May 10, 2012

Today

Today is an interesting day, the culmination of an 'interesting' week.  Molly continues to do fabulous for the most part without the prevacid, so the the national shortage has been a huge blessing for us.  Since we got her off successfully, I was able to cancel a follow up appointment with her GI (being on prevacid was the only reason he wanted to see her).  It feels extremely liberating to only need to give her vitamins and lots of fluids now.  Her poop has been beyond beautiful.  Except she seems to have a once a week MASSIVE explosion.  And she's always wearing the same jammies when it happens-I think they might be cursed.  It makes me appreciate a normal kid's 'blowout'.

Last Sunday was our family's official debut at church as an entire unit.  It felt great to finally be able to take everyone at the same time.  I met with the helpers for Molly and Big Baby's class to explain her delays and issues, and I think Molly will do great once she can actually go.  I'm guessing it's going to be some great therapy for her.  Although I have also gained a new appreciation for my friends with twins.  Wow. 

Our neighborhood had a gardening class last night to talk about the 'specialness' of our soil and tips and tricks for growing stuff successfully out here.  It was really informative.  It also gave me a chance to talk to a neighbor who is dealing with much more complicated issues than Molly's with her 3 year old.  We ended up talking until 10:30.  It was nice because it helped solidify that we really do need to add behavior therapy to Molly's little regime.  Her responses to things are so out of control extreme, and she can't understand when we are trying to soothe her.  This makes for some really long days.  There has been a lot of discussion on the support group lately that made me realize this too is probably a result of all her issues and prematurity-not just an early start to the terrible two's.  My friend last night described it as the terrible two's on crack.  I'm really hoping we can get some tips and suggestions on how to deal with it, or we might have a lot more excursions at home this summer instead of out and about.

This also got me thinking again of how blessed we have been.  As frustrating as some things seem right now, I still know that we have it great compared to most families dealing with short gut.  One of Molly's short gut buddies lost her battle last month and earned her angel wings.  Remembering this definitely adds a lot of patience for dealing with poop on walls, cribs, floors, and everywhere else you can think of. 

Outside of the recent events with Molly, things are looking up.  We are so close to getting our basement finished and have even started moving the toy room downstairs.  The kids are just as excited as we are to be done I think.  We've had time to sit down and evaluate our goals for the next few years.  It's so nice to have some degree of certainty back in our lives again, and things are progressing super fast with several of our goals.  I'm so thankful we switched jobs when we did, and to the company we did.  They have been so amazing to work with on every level.

So today I'm trying to move past the sad and negative thoughts from the past week.  I'm trying to find new motivation to make exercise fit into my schedule.  I'm trying not to burst into tears over every little thing because my body has decided that anything and everything requires a physical response of tears.  I'm trying to focus on today and be a better mom and wife.  Hopefully, I'll also figure out a way to meet with Paul, because I could really use a therapist lately.

What kinds of things are you doing today???

Monday, April 30, 2012

One Proud Momma

Saturday was little man's second soccer game.  We discovered last week that his team can sort of actually play when they slaughtered the other team 35 to 2 or something like that.  Watching him get so excited to go to practice or a game has been great considering the only thing he ever requests is video games.  His focus and intensity has been awesome.  I didn't get to see this game, but I got several play by plays from all the kids and Adam.

Apparently Adam made a bribery deal with little man in an effort to get him to really try.  I guess it had several tiers with smaller prizes for smaller accomplishments, leading up to a video game after he scored 5 goals.  He thought it would take the whole season.  Not so with our little man.  Once he knew what was at stake, he made sure it happened.  He scored three goals in the first 5 minutes of the game.

After the fourth goal, Adam told him that he needed to start passing to his teammates and help them to score.  So he did.  Every time he got the ball, he would take it right to the goal, then wait for a teammate to show up and pass the ball to them so they could score.  By halftime, the coaches told the team they needed to not score so much and let the other team score too.  Tyson rejected this at first, but quickly changed his mind when he thought about how the other team must be feeling.  So he spent the rest of the game trying not to score and helping the other side.

By the end of the game, he had scored another goal accidentally.  He went running to the sidelines to Adam, and reminded him that he earned the whole video game now.  That made all the parents start laughing out loud.  When they got home he had also earned three big boxes of candy that he very willingly shared with all of us.  I was proud on several levels. One, that he maintained his focus on the end goal.  Two, that he was willing to be a team player, knowing it might keep him from getting his goal in one game.  Three, even once he got his reward, he was so willing to share it with everyone rather than hoard it for himself.

Makes me feel that maybe something we're trying to teach is actually sinking in.

Friday, April 27, 2012

Just Off

Somehow I've managed to lose the month of April somewhere. I don't know what I did with it, I just know there's no way it's already over. I'm still struggling to find my groove since getting back from Texas, both physically and mentally. Physically, Adam and I have both had just plain weird things going on. Back spasms, stomach issues, tension migraines, allergies, etc. I have this feeling that I'm heading towards a train wreck with my stomach issues, but I don't have the energy to figure out what's setting it off. To top things off, my neck, shoulders, and back have been so tight I'm scared of a serious injury if I work out yet, so I've just been avoiding exercise all together. It's probably a quick fix at the chiropractor-just need to get it into the schedule.

Other than that, I'm just off. I've been so tired that I can't focus on anything, and I've been falling asleep at 8 and 9 pm. Being so tired gets me back into my depressed state of mind, so it's been hard to shake off. Then I start taking it out on the kiddos, and guilt sets in. A totally vicious cycle, and one I'm really working on breaking. I'm trying to go back and read through the tips and advice from Paul last summer, but it feels like it's not what I need to hear right now. Super frustrating.

One thing keeping me somewhat in check is appointments. Between dentist, therapy, and rehab specialist, we've been pretty busy. Little man had his first bad news check-up at the dentist. I'm still figuring out how to tell him he's getting knocked out so they can get fixed. Molly is the super star of the month. First, she's pretty much stair safe!!!! After spending hours every day practicing going up and down, she's got it down! When we told Dr. Gooch at her follow up appointment, her jaw dropped. Yeah, that's how Molly rolls. Standing and walking are still a long ways off, but at least stairs don't give me a heart attack anymore and the baby gate is safely put away again. She also had a breakthrough with receptive language. Through much bribery of treats and ice cream, she figured out the sign and word for 'more'!!!!!!!! Even though she had two days of consequences from the ice cream, it was worth it!! Dr. Gooch suggested starting speech therapy, but we decided to hold off one more month and see what she does first.

Another area of excitement (hopefully), is that Molly appears to be ok without the prevacid anymore! In trying to get more for her the past few weeks, I discovered just how bad the shortage is nationally. Pretty much our only option was to get the solu-tabs, which work great, but it's a $185 co-pay for a 4 week supply. Since she's been doing better with reflux lately, we decided to try and take her off before investing in a solu-tab refill. Today is day three and so far, so good!!!!! (knock on wood)

On a different Molly note, the big girls are starting to see just how behind Molly is in the physical department. Today when I picked them up from school, they were going on and on about how a parent volunteer came in for a party and brought a baby the same age as Molly. They were shocked at how well she was walking and getting into things and talking. Part of me was glad they see Molly as the norm, but a little piece of my heart was aching that the differences are becoming more and more noticeable for them. They are still her biggest cheerleaders.

Overall, I feel like I'm getting closer to back on track at this point. I just wish my body would quit hating me so much sometimes.

Monday, April 16, 2012

Success!

We are back! I survived the Texas trip!!! The past ten days have been a super fun, but definitely not restful, vacation to visit my parents. The kids did amazing with the 20+ hours of driving each way. Bringing my amazing, about to be 18 year old niece was the best decision I could've made. She was so helpful with the kids.

We basically consumed candy and ice cream the entire week we were there. Some of it was in the name of science. My niece had never tried blue bell ice cream and we needed to figure out what flavor is the best (we decided on two-depending on your mood). It was the most action packed vacation I can remember. We were going 100 miles per hour from the moment we parked the car in the driveway.

Big baby and Molly did great too. Molly had some gas issues, and I kept up with the grapefruit seed extract, which seemed to help. They both remembered my parents, which was fun. I have a feeling their house seems awfully quiet this week after all their squeals, screams, and crying. Big baby even said her first impromptu prayer. It consisted of thanking Heavenly Father for her favorite things of the day, or "tings a day". It was super cute.

On the down side, I got my first speeding ticket in 15 years. Stupid speed limit signs are posted on the median of the road on the reservation near Shiprock, NM. The cop never even gave me a chance to explain anything. The most frustrating part is that the stupid ticket keeps repeating that you have to pay with a check or money order, but it never tells you who to make the check out to! STUPID!!!

I loved almost every minute of the trip, and even got some workouts in. It felt really good. although I came home completely exhausted, and I'm really excited for no trips until June-ish, it was a fabulous break. I think this will be one for the memory books for the kids. For my niece and I, we'll be remembering all the poop art and blow outs we got to deal with on the drive home...