Wordless Wednesday



Really quick

I was about to go to bed when I went to plug in my fancy new phone (that I still really don't know how to work) and found that I had a new email.  Remember our Palm Springs trip a couple of weeks ago?  Well, one of the awesome wives on the team took some really great pictures and sent them to all of us,

and these are my four favs...

 (I really need to crop the foot out of that one)

(the ice cream man came by and I seriously think he may have sold every. single. push-up-pop that he had on his truck, just to our team alone). 

And apparently then Abby topped it off with a...hawaiian roll???

That's my girl!

More bits and pieces of Easter

Well, the phone rang at 6:45am this morning and sure enough they were calling Brian into work.  And even though they were having the traditional Easter feast at the station, they didn't have the families come. So our plans changed and we went to my sister's house without him, and skipped Grandma and Grandpa's since Brian couldn't go and hopefully we will be able to celebrate Easter with his parents later this week.

I was all excited because the weather has been nice lately. And even though I am always very good at using hand-me-downs for the holidays, I couldn't pass up these little dresses and shoes from Target.  So I got the girls all decked out in matching outfits and was really hoping to get a nice picture of them together and one of all of us. But since Brian wasn't there, I didn't even take the camera out of the car and the weather was cloudy and cold so they had to wear sweaters and well...it was just one big bust. 

I am happy that my new phone takes pretty decent pictures and I am even more happy about the fact that I figured out how to email them to my computer (I'm a newbee to smartphones and really don't have a clue how they work).  Anyways, back to Easter...I had a really hard time getting the girls to stand together AND smile together, and well, it was just another big bust!   

I think Lilly turned her head away on purpose...like she does for most pictures.

Again. Abby excited to be holding Lilly in her lap.  Lils...well, I think the look on her face pretty much sums up how she felt about sitting on Abby's lap.

Cousin Nicholas and Lilly...apparently eating? a chair.

Cousin Hannah and Abby. I think if you zoom in enough you might actually be able to see the crackers in her mouth. Gross.

My attempt at getting a picture of Abby, smiling at the camera. Seriously?  What was I thinking?

So I think I might take a day later this week when the weather is nicer and I have more patience and put them back in their dresses and try again.

The good news is, we ate a lot. And played a lot. And hopefully tonight...

we will sleep a lot!

Happy Easter!

Bits and Pieces of Easter

I know it is not Easter today, but we are expecting that Daddy might get an overtime day tomorrow, so the Easter Bunny was kind enough to come by our house early.  We had a fun little egg hunt in the yard.  Abby had a blast coloring (and eating) some eggs, and of course, the Easter Bunny left some special Easter treats. 

Tomorrow we are off to Auntie Erin's house for brunch and then Grandma and Grandpa's for dinner!

Today is a special day

It probably wouldn't be a big deal to most, but today is a special (and a little bit of an emotional) day for me.  One that, to be honest, I am having a hard time wrapping my brain around.  Today Lilly is 3 days shy of her 16-month birthday.  No big deal really. It's just weird because on the day that Abby was 3 days shy of her 16-month birthday, Lilly was born.  Lilly seems like such a baby and yet when I was pregnant with her, Abby seemed so grown up to me.  I can't even imagine Lilly becoming a big sister at this age. It almost makes me feel sad for Abby...that we made her grow up so fast, become a big sister when really, she was just a baby herself.  I don't know.  I guess it's just all a matter of perspective.  Today I am happy that Lilly doesn't have to grow up too fast. And today I feel sad because I feel like we forced Abby to grow up too fast.  And a tiny part of me, today, is a little sad knowing that neither of them, ever, will be a big sister to another little Corntassel baby.  

This is Abby, all "grown up" just shy of her 16-month birthday...

And this is Lilly on the same day...

And this is them today...

 

Lilly, 3 days away from her 16-month birthday and

Abby, one week shy of 2 years and 8 months old. 

*Sigh*

Random Catching Up

Last weekend we took our annual trip to Palm Springs for the Firefighter Softball Tournament.  It was my 6th year going.  The first year I went I had barely just met Brian but he talked me into going with him and I did and who knew that it would be where my Corny Life began.  Nonetheless I have never looked back and 6 years later I can't even believe the path our lives have taken.  Marriage. Infertility. Hospitals. Life. Death. Miracles. You name it, we've lived it.  Or so it seems...at least for us anyways.

So back to last weekend. It was fun, as always.  And the best part was, our guys won the whole stinkin' thing!  Go GREEN!

Here are some pictures (in completely random order and taken almost all on the same day because I was too lazy to get my camera out any other day)

 Lilly trying to tell the guys how to get it done from the dugout.

The girls settling into the sofabed for what was one of three miserable nights of sleep.

Abby finding the biggest pile of dirt to play in.

Team Gangreen and (some) of the kids. As many as are in the picture, there are probably even more not in it. There are lots of kids on our team and it makes for a fun weekend-long playdate!

Lilly on our patio ready to go out for the team dinner on Sunday night.  Sadly both girls fell asleep on the way to the restaurant so we ended up turning around, driving through KFC, and eating in our hotel room. And yes...the girls did wake up as soon as we got back. *Sigh.* 

A random picture during a game break...all of us proudly wearing green.  Abby was too busy playing in the dirt to get in the picture.

It was oh so fun and now we are looking forward to this summer's Firefighter Olympics! 

Seriously? It's been a month?

I can't believe it's been a month since I've posted on the blog. And even more importantly, it's been a month since I've had a chance to catch up with everyone else in the blog world. Seriously. Where does the time go???

I have a camera full of pictures that I have yet to upload to the computer.  Not sure why I don't have time to do it. Maybe it has something to do with the fact that Lilly is not only walking, but is basically at a full speed sprint. Everywhere. It's tougher than I thought...trying to keep up with both of them.   The good part is, I am skinnier that I have been in about 5 years.  So I guess keeping up with them is doing some bit of good.

I am hoping to get one of those fancy smart phones one of these days, so when I'm sitting at the doctors office, at physical therapy, or in a parking lot when the kids have fallen asleep in the car, I can be, you know, productive.  I'll get bills paid. Make phone calls. List things to sell on eBay. Maybe buy a few things on eBay. Research local events that might be fun to do with the kids. Check the weather. Read emails. Post to my blog. Read other blogs.  You know...the important stuff. 

But for now, I don't have a smart phone, and I should get to bed, because the kids have finally, fallen asleep.

Is there a doctor in the house?

I don't know if it has anything to do with how many hours/days/weeks my girls have spent in the hospital or at doctor's appointments, but one of Abby's favorite things to do is play with the stethoscope.

And Lilly doesn't seem to mind at all!

Abby has discovered the wonderful world of pretend play and I absolutely love it. From being a "doctor" to having full "conversations" on the (pretend) phone...she really has quite an imagination.

I'm not sure what the title of this post should be

We have been so busy the past two weeks, but for the first time in a long time, I feel like we have accomplished so much.  We survived the MRI and the results, and after a brief, but inevitable pity party, I am feeling really good about what is in store for Abby. She will begin physical therapy this Thursday and will have two 45-minute sessions per week. I was even able to name the days and times, so it will be every Monday at 11am and every Thursday and 10am.  I love consistency!  After 25 visits, she will be re-evaluated and we will go from there. Total random sidenote...it's 9:12pm as I type this, I just put Abby to bed, and I can hear her up there singing shouting,  her ABC's. I love that little girl!

Another thing checked off my list...preschool! Not only did we get Abby into our first choice of schools, but we were able to get her into the days and times we wanted too. And she even has a little friend who will be in her class. Wahoo!

As for Lilly, she had her developmental clinic this week.  I was somewhat surprised at the results.  First of all, I shoud mention that she is 14.75 months old, 12.5 months adjusted. She weighs 26 pounds 5 ounces and is 32.5" tall.  This is about 3lbs more and 2.5 inches taller than Abby was at the same age.  Anyways, her scores were:

Cognitive Age Equivilant: 17 months
Receptive and Expressive Language: 13 months
Fine and Gross Motor: 12 months

I guess what was a surprise to me is that I was expecting her Fine and gross motor skills to score higher than her cognitive scores, not that I have anything to base that expectation on, except maybe Abby's scores at the same age.   Anyways, she did very well and although I am grateful that she is on target, it also means that she doesn't qualify for services or even to be followed by RCOC, which, in light of Abby's recent diagnosis, I am a little bummed about.

The pediatrician and therapist who evaulated Lilly at developmental clinic are the same ones that followed Abby for 2 years. The same ones who didn't notice Abby's abnormal gait. The same ones who discharged her. Let me tell you that it didn't take long before I let them know about her recent diagnosis...not to make them feel bad for missing such a major diagnosis, but in hopes that maybe in the future they will pay a little closer attention to the future tippy-toe walkers who come through their clinic (and maybe a little teeny-tiny part of me wanted them to feel a teeny-tiny bit bad about missing such a major diagnosis).

Ok, enough with my bitterness, for now...I do have some thoughts on the subject of sensitivity (or lack thereof), which I plan to write about soon...but I should get to bed now.  I am keeping all those affected by the earthquake and tsunami in my prayers, and before I go , I ask that you please read this story, and say a prayer their family as well.

A Better Late than Never Wordless Wednesday

Just when I was feeling the lowest I've felt in a long time...I received this picture in an email...one I had never seen before.

It's just what I needed.

A giggle.

A Mother's Guilt

Tonight I should be feeling relief and yet I feel nothing but a mountain of guilt. Abby's MRI results confirmed what we suspected. Mild CP.

I should be relieved that it wasn't something worse.
I should be relieved that it is "mild".
I should be relieved that there is something we can do to help her.

And yet all I feel right now is guilt.

Guilt for her being born prematurely.
Guilt for her not having her twin sister by her side every minute of every day.
Guilt for her being so sick at birth.
Guilt for dismissing her "abnormal gait" for so long when I knew something wasn't quite right.
Guilt for letting her therapists discharge her.
Guilt for letting her down, repeatedly.
Guilt that my body failed all three of my daughters, in one way or another.

Tonight, all I feel is guilt.

Abby's MRI

Just a quick update...the MRI went well.  Abby was such a trooper.  She put up quite the fight going under and when she went limp in my arms I just started to cry. It was so hard to walk away from her, but about 50 minutes later she was waking up and back in my arms.  She was really cranky. The doctor said that even in her unconscious state, she tried to pull the IV out of the back of her hand.  That's my girl! We ran into our favorite doctor while we were in recovery. The one who saved our little girl's life. The one who performed the surgery on her when she was just 3 days old and again when she was 6 months.  I am sure he loves to see how his patients are doing just as much as we love seeing him.  He couldn't believe how great Abby looked (even if she was just waking up from anesthesia).  Anyways, she recovered nicely, took a good nap in the afternoon, and was quickly back to her normal self.  Now we are just waiting for Tuesday to hear the results.  As for the PT assessment, they are going to recommend two 45 minute sessions per week to start.  We're in a holding pattern again while the report gets submitted to insurance and approved and blah blah blah.

Lilly is getting more interested in walking and will now pretty regularly walk 10 or so steps around the living room.  She still prefers to crawl though and gets around much faster that way.  It may be a couple more weeks or so until we can officially call it "walking".  But she's getting there.

I have another cold...sinus thing...whatever...I don't know.  I just know I feel like poo. I had to work yesterday and today and I'm looking forward to spending some time with my girls this weekend. 

That's it!  Thanks once again for all of the well wishes and prayers for Abby.  They worked!

An MRI, PT Assessment and Preschool

To say we have been a little busy would be a bit of an understatement. The good thing about being busy I suppose, is that I haven't had too much time to dwell on the fact that in less than 2 days we will once again be back at the hospital, putting Abby under general anesthesia, for what will hopefully be an uneventful MRI. Then its just a short long, excrutiatingly painful and anxiety filled 6 days until we see the neurologist for the results. She had her pre-anesthesia physical today and appears to be healthy with the exception of some fluid in her right ear, which is either lingering from the last ear infection or the beginning of yet another. Luckily it's not a show stopper though. At two-and-a-half years old she weighs 34 pounds and is 36 inches tall.  Lately it's been really hard to get her to eat. Not sure what's up with that but I guess since she's well above the 90th percentile for her weight, all is good right now. On a whim two days ago I decided to convert her crib to a toddler bed.  She's slept through the night and napped both days since, so maybe she was ready for it, or maybe it's the calm before the storm...time will tell.  Today Brian and I visited what we think is our first choice on the list for preschools. We are going to try to take Abby back on Thursday during classtime to spend some time in the class and see how she does in their environment.  If it works out well, registration is next week and hopefully there will be a spot for her. Tomorrow she has her PT evaluation with her new therapists. We really like the place we found and are anxious to get her started.  I have no idea what to expect as far as how much therapy will be needed and how many days per week or month we will be going, but it's just a matter of time before those questions are answered. As for Lilly, well, she's 14 months old and I would be lying if I said I wasn't a wee bit concerned about the fact that she isn't walking yet. She takes a couple of steps here and there, and every once in a while gets 7 or 8 steps without dropping to her knees, so we know she can do it, and I am hoping soon she will want to do it.  She has her developmental assessment next week and it should shed a lot of light on what we need to work on with her. She's as cute as can be though and oh my goodness, she's like a human garbage disposal.  The kid will eat anything and everything. She's quite the chunk, but I love it.
As usual Brian is working as much as he can, eventhough OT in the LAFD is hard to come by these days. I even worked 3 days last week which I am paying dearly for now. Being away for 10 hours for 3 days out of 4 was a little much for me, and the girls.  All I know is that I am really looking forward to getting these next two busy and stressful weeks behind us so we can get back to normal, whatever that is. 

Wordless Wednesday

(Abby's first pony ride)

Short and Sweet

Update:

I spoke too soon. Brian is again suffering from 103+ degree fever. He's on a Z-pack now. I called my MIL for backup tomorrow in the event it hits me because let's face it...it's inevitable.

She has it too. 

*Sigh* 

---------------------------------------------------------------------------------------------------------
Brian is heathy again. Abby is well on her way back to healthy and definitely feeling better because she's back to her usual antics. And after a third trip to the doctor today, Lilly had a chest x-ray and luckily(?) it's bronchitis, not pneumonia. She had an injection today and will have another tomorrow, then she'll start liquid antibiotics for 10 days. And me?  Well?  It sounds crazy but I feel like I might be coming down with something.

It's 11:43pm

...I worked all day and I am exhausted (yes...I took a part time job outside the house...details in another post, I suppose)...I just got home from a run to the drugstore...Brian is in our bed with a fever of 102 degrees...Abby is in her bed...her temp is finally below 100... she's restless, but asleep...Lilly is in her bed with a fever of 101 degrees...I am sitting here...listening to her snore/breathe/cough/snore...trying to convince myself that I know the difference between congestion and laboring to breathe...and I think she's just congested...and congestion is fine, laboring to breathe is not...and I might just sit here awake...all night...listening to her snore/breathe/cough/snore until morning when I can get her to our doctor's office...

103.5 Degrees

Poor Abby. As you may recall, both girls were on antibiotics for 10 days because of a nasty bug, which for Abby included a double ear infection. We finished up the antibiotics last Saturday. Although their noses were still a little runny, even after 10 days of medicine, I didn't think much of it.

That is, until yesterday.

Abby just didn't seem like herself at storytime. She didn't dance and sing. She didn't want to play afterwards.  When we got home, she felt a little warm and sure enough...she had a fever of 102 degrees. She wouldn't eat. She didn't want to drink. After almost force feeding her one spoonful of soup last night, she threw it right back up. By 11pm, her temperature was 103.5.  Nothing was bringing it down.

I took her to the doctor first thing this morning and sure enough...she still has a raging ear infection. Dr. P said on a scale of one to five (5 being the worst), her right ear was a three and her left, a SIX.  Poor thing has a red and irritated throat too. Apparently this nasty little bug was able to hold it's own against ten days of Amoxicillan.   

All I have to say is bring it on, little bug.

We're armed with Augmentin now.
 

What were you doing on January 29, 2009?

I was doing this.

But instead of dwelling on the past, I would rather think about the present...and how back on that day two years ago...I never in a million years expected that I would have two little redheads to love.  And my oh my, how different they are. 

But loved.
Oh so loved.
Just the same.

The Next Steps

We met with our new neurologist today. We loved him. He was awesome with Abby. He was awesome with us.

The long and short of it is that he concurred with our orthopedist's findings. So, not surprisingly, the next step is an MRI to confirm the diagnosis.  He suspects that at some time during my pregnancy or within the first few hours of Abby's life, she suffered from some sort of minor brain bleed. The awesome news is that whatever the damage, it appears as though it is extremely mild, which is surprising even to the doctor, given the complications I had during that pregnancy and her low birth weight.  The fact that she has hit her milestones (sitting, walking, talking, etc.) is reassurance that whatever we are dealing with is definitely on the mild side of the spectrum.

He wrote a prescription for PT so that we can go through our insurance and get started right away without having to wait the months that it might take to get through the CCS system (although we are hopeful that we will be accepted into CCS). And as I am sure any parent can imagine, I am horrified at the thought of having to put Abby under general anesthesia again.  It gives me some peace to know that this is just an MRI...it's not a surgery that she will wake up from in pain. I hope all she remembers is a nice little nap when it is over. But the hospital, the IVs, the going under...I was hoping we were done with that two years ago.  I don't know about you, but I can't believe we are 2 days away from the 2 year anniversary of her colostomy takedown and here we are, back at CHOC, with doctors and specialists and tests and therapies and worry and so on and so on.

But here we are indeed.

And I know I haven't had the chance to respond to everyone who has commented, texted, emailed, called...and I'm sorry, but your kindness and your prayers don't go unnoticed. Thank you so, so much for keeping our family, and more importantly Abby, in your thoughts and prayers.

It means the world to us.

Wordless Wednesday

(Better luck next season, Bears)

Breathe

It's been a tough week.

We've been couped up.

Sick.

Tired.

Sick of being sick and tired.

We needed some fresh air.

We got fresh air.

For a little while (at least), we got fresh air.

And for a little while, I didn't worry about our upcoming Thursday appointment with our new neurologist.

Blindsided

Let me preface this by saying that I have really been struggling as to whether or not I wanted to post this information. On one hand, I figure why not…I’ve shared just about everything else on this blog. On the other hand, this is a tough one to grasp and uncertainty is surrounding my family right now. And let’s face it…I don’t have many details yet and therefore maybe talking about it here is a little premature.

But sometimes, when my thoughts overwhelm me and I am too tired of talking about things out loud (and my husband is away at work for days at a time), the next best thing for me to do is to write my thoughts down.  With that said…

Ever since Tuesday I have been walking around feeling as though I had just been hit by a speeding train.  As we all know, Abby is just about 2 ½ years old. She has been through so much and has fought so hard. She is so awesome and big and strong and smart and pretty and our miracle TTTS survivor and when you look at her, you would never in a million years believe that she was ever a preemie, let alone one who went through what she did in the first 6 months of her life.

When we brought Abby home we were followed by CCS. She got 1 hour of physical therapy once a month for about a year, until we were eventually cut off, not only because of state budget cutbacks, but because Abby was doing so well, developmentally. She was also seen by early interventionists every 6 months and was discharged at age 2. Awesome.

Something I’ve always noticed is that Abby doesn’t quite walk on her right foot the same way she does on her left.  She seems to slightly ‘favor’ her right heel. I’ve kept my eye on it for a while now, and last week I started to think maybe we should have it looked at by an orthopedist. I didn’t think she was injured. I just remembered that before she started walking she was definitely pigeon-toed in the right foot, but it certainly didn't get in her way. I just thought maybe he could prescribe a little physical therapy. No big deal. After all it couldn't be anything major.  The previous therapists didn't notice anything. The early interventionists at EDAC didn't notice anything. Our pediatrician didn't notice anything.

So I made an appointment and Tuesday we went to see the doctor.  He took us into the hallway to play with a ball. He wanted to see her run. She ran.  Then he did a little examination…checked her reflexes and stretched her out a bit. Then he looked at me and said…

“She doesn’t have an orthopedic problem”.  (you may have heard my giant sigh of relief)

He said:

(cue the speeding train)

“It’s a neurological one”.

Can we just live in a bubble?

I know everyone gets sick during the wintertime. But my kids were preemies.  Their lungs aren't nearly as developed, even at their ages, as full-term kids the same age. So going to indoor, confined spaces...is usually not a good thing.

Case and point:

Poor Lilly. After a night at Pajama Storytime and a morning at the gym running (or in Lilly's case, crawling) on trampolines, mats, balance beams, ladders and slides, this is what Lilly looked like.

Next thing you know we have runny noses, coughing, fevers and oh my...PINK EYE.

Both girls are now on antibiotics and even though we thought Lilly was the "sick one", we were surprised to find out today that Abby has a double ear infection.

Seriously, can we just live in a bubble?

I can't help it

I know we still have another week to go, but I can't help myself. I'm not a bandwagon fan. The fact is I am originally from Chicago and even though its been (many) years since I've lived there...I remember going to the games when I was little, wearing my Walter Payton jersey...by the time we made it to the Superbowl in 1986 we had already been living in California for 6 years...I totally remember watching the Bears beat the Pats in the family room of our house on Aspenwall Lane.

Go Bears!

Resolution Update

Resolution #1 - One toy at a time.

I am proud to say that my closet pictured in this post, is amazingly still in tact. Every once in a while we end up with more than one toy out at a time, but much to my surprise, we are sticking to this resolution much more than I ever imagined we would.

Resolution #2 - A new hairstyle.

It happened. Last Thursday. Nothing major. About 4 inches cut off. Long layers. Really nothing exciting. But it works.

Resolution #3 - Cry it out

I knew this one had to be one I was really ready for, and I guess deep down inside I was ready. And to be honest, I guess Lilly was too. It only took 3 nights...not bad...and she was sleeping through the night. Now don't be fooled - I don't put her in her crib while she's still awake yet. This cry it out mission was merely to get her to sleep in her own crib and through the night. The put-her-in-her-crib-awake-and-let-her-fall-asleep-on-her-own hasn't happened yet.

Baby steps people.

Seriously.

Stay tuned for more resolutions because I am on a roll.

For the love

For

the

love

of

Wildtree

Alfredo

Extraordinaire!