Sunday, September 30, 2012

I can do it!

I wasn't paying attention last night and Lilah grabbed onto the mashed potatoes and started feeding herself!  She is miss independent!

Look What I Can Do!

Lilah can pull up in her crib now, which means less sleep and more play!

Monday, September 24, 2012

A Conversation with God

Macie hadn't really said much about our conversation with Father Burns yesterday, but this afternoon when they were eating snack, I heard this:

M: Gavin, I want us to stay together when we grow up. 
G: K
M: You have to tell God, OK? So he will know
G: God...(mumble mumble mumble) together
M: No, say, God, I want to stay with Gavin when I grow up
G: God
M: I want stay with Gavin, I mean Macie, forever
G: God, I want to stay with Macie grow up....forever
M: Now say in the name of the father, son, holy spirit.  OK, he knows now.

I am in the other room listening with tears running down my face.  As crazy as our life can be, I wouldn't trade it for anything. Even though they can be so mean to each other, I know deep down they love and care for each other.  These are the moments I live for.  These are the moments I'm proud to be their mom!! 

Boy or Girl?

Sunday afternoon, we went over to Rachel and Eric's house to find out if they are having a boy or a girl.  Rachel, Eric, and Anya found out first, but wanted to share the news with a few friends and family members.  We each had to vote and put on a clothespin (pink for girl, blue for boy).  Gavin picked boy and the rest of us picked girl.  He was cute because he stood in a picture with all of the other people who voted boy.  There were pink and blue snacks to eat.
Once everyone had voted, we each picked a cookie or cakeball that had the right color inside.  We all took a bite and found out that it was a......
I was wrong, but actually happy that I was wrong.  I was hoping that they would have a boy since they already had a girl.  We brought them a few gifts.  We got the baby a pack of diapers because no matter what the gender, they would need them.  Macie also got Anya a big sister book.  She wrote her a note that said, "Anya, Being a "Big Sister" is hard work, but you'll be great!  Love, Macie".  After the reveal, we hung out for a while.  I'm happy for the Maurers and can't wait to meet the new addition in March!  
I didn't take many pictures because I was busy talking and chasing kids, but I got these cute ones!

Sunday, September 23, 2012

Sippy Cup

Tonight, Lilah used a sippy cup for the first time!  She loved it, but still needs plenty of practice!

9 Months Old

My sweet, baby girl is 9 months old.  My baby, my last baby, is already 3/4 a year old.  How sad...
Anywho, here is what she's up to:

Lilah is a mover!  She is pulling up on anything and everything!  She is even starting to transfer from one object to another and cruise along things.  I seriously can't keep her out of anything!

She is a mama's girl!  She follows me around the house crying so that I will pick her up.

Lilah has been eating more and more big people food.  She loves it all!  She has shown less and less interest in her bottle though.  It is often a struggle to get it down.

She is pretty happy and into anything and everything she can get her hands on.  It is fun to watch her explore the world around her, but it is difficult to keep things out of her mouth!

She loves to play at the activity table.  It is definitely her favorite toy! 

She has more hair coming in, but it is very blonde.  It is also the straightest of any of my kids so far.  Her eyes are also bright blue.  We shall see!

Lilah Jean is such a joy and I can't wait learn more about her personality!

Brian took her pictures and she was all over the place...

Look what I found...

A random picture...wonder who the photographer is??

Macie Update

I was able to call Dr. Voyles.  He said to reassure her and to give her Mylanta twice a day for her belly issues.  If she still had major issues in two weeks, to call back.

Since I last blogged about Macie's tantrums and worries, things have gotten better.  She has still been challenging, but we haven't had any major tantrums.  She has continued talking about heaven and death on a regular basis.  She also talks a lot about Gavin and his issues.  I knew that she needed to speak with someone.  Thankfully, Father Burns agreed to meet with us.  Macie and I went to church by ourselves this morning and then met with Father for a little chat.  Macie and I had talked about it before and she was ready.  When Father was talking, Macie was super quiet and serious, but I knew that she was taking it all in.  After, it was funny because as soon as the "serious" talk was over, she couldn't wait to tell him we were going to Target to buy a new headband because Gavin broke her other one.  He started laughing.  Hopefully, it will be helpful for Macie and she won't be freaked out all of the time!


On the way to school the other morning, I told Macie that I was going to try to lose weight.  She said, "Mommy, if you want to lose weight, all you have to do is run!"  It worked for daddy, so I guess she has a point!

Wednesday, September 19, 2012

Night At Parker's Pictures

I stole these pictures from Aunt Beth's blog.  I think Gavin had a great time with his cousin, Parker!

Weight Watchers

A little over a week ago, I signed up for Weight Watchers.  I know a lot of people who have been successful with it.  The last few years I have been so up and down with my weight because of the pregnancies. Since I'm done having babies, I knew it was a good time.  Brian has been a good inspiration for me, too.  Since joining, I've already lost 10 pounds in a week and a half!  I know that the weight will fall off more easily in the beginning, but believe me, I have plenty to lose! 

At first, it was difficult to figure out the points for everything and find a good balance for me.  I wasn't always full.  It didn't help that I started the program before grocery shopping.  The best thing about this program is, most fruits and veggies are free!  I've only allowed myself to use the daily points and no bonus points yet.  I want to get the hang of the program before I go too crazy.  Now, I am in the groove and feeling good every day.  Hopefully, this will be a life changing adventure for me!

Saturday, September 15, 2012


As I've said over and over and over, nothing in our life has been normal for the last 6 or 7 weeks.  This had taken a HUGE toll on Macie.  She is very much a schedule and routine kind of kid.  She is used to us being home almost every night as a family.  We eat dinner, do baths, watch movies, play, etc.  Of course, we have nights when one of us is gone, but it is more of an exception than the norm.  She is also my most emotionally, needy child, so Macie is not handling this well at all.  The last few days she has been throwing major tantrums.  I mean MAJOR.  Throwing herself on the floor, screaming, hitting us tantrums. 
Overall, Macie has matured so much and I've been so proud of her.  This week, not so much.  It is utterly embarrassing to have your almost four year old acting crazy.  I don't want to make excuses for her, but I don't think the knows how to express herself and this is the way she's doing it.
When she was finally calm this afternoon, I had a talk with her.  When I asked her why she was getting so upset, she said because her belly hurt every day.  She has been complaining of this a lot.  All of a sudden, it hit me....I think she is terrified, stressed, worried, upset, anxious, scared. and every other emotion.  She is making herself sick and upset.  I just started crying and held her.  My poor baby:)  She is just a little girl.
In the last few weeks, she's been shuffled from place to place, heard a lot about death and being sick, seen Gavin have two major attacks, started preschool, and started sharing a room with Lilah.  She's seen her parents cry more than normal.  That would be a lot for anyone, but especially a 3 year old.
I told her I was going to call Dr. Voyles on Monday to see what he thought.  I don't know if he will need to see her or recommend we take her to talk to someone. 
I feel so badly about all of this.  As much as I don't tolerate the behavior, I know I just have to love her through this. 

The Numbers Don't Lie

I was talking with my mom last night about some of the stuff Gavin has been through.  She suggested that I add it all up.  Here is what I came up with:

Number of years/months alive: 2.5 years/31 Months
Number of nights spent in the hospital: 8
Number of Diagnosis: 4 (Hemangioma, Vascular Lesion, Mixed Malformation, Klippel-Trenaunay)
Number of Areas of Concern (Past/Present): 3 (Sacral Dimple, Vascular Lesion, Throat)
Number of times admitted to the hospital: 4 (If you count that fact that he was sent home and then readmitted)
Number of Rooms stayed in at Hospital: 5 (There was a lot of moving around during the first visit!)
Number of ER Visits: 4
Number of times on steroids: 5
Number of Doctors Seen/Referred To: 6 (Plus all doctors in Vascular Lesion Clinic)
Number of Trips to Riley: 8 (Plus one local visit through televideo)
Number of Surgeries: 2 (MRI, throat)
Number of other Procedures: 4 (x-rays, ultrasounds)
Number of Therapy Types: 2 (Physical, Developmental)
Number of Service Coordinators in First Steps: 4 (Just thought that was funny)
Number of Sleepless Nights for Mom and Dad: Countless!

The Straw that Broke the Camel's Back

You know that saying, "Don't cry over spilt milk?"  Well, I did...
After weeks and weeks of the "straw" piling on, I broke!  Last night at dinner, Macie spilled her milk.  She has been doing so well and it was an honest mistake.  I just saw the milk and started crying.  Poor Macie...I kept telling her that I wasn't mad at her, just upset.  Lord help me! 

ER Visit Two and Hospital Stay

Wednesday night, all of the kids were in bed by about 5:30.  Gavin and Lilah were sound asleep and Macie was "resting" in bed.  It sounds early, but we hadn't really gotten much sleep the night before.  Brian and I hoped to go to bed early.  I had an appointment at 6:30, so I left the house about 6:15.  I hadn't gotten very far and Brian called me saying that Gavin needed to go back to the emergency room.  He had woken up and was having another "attack".  I turned around to rush home.  On the way, I called my parents to see if my mom could meet us there so Brian and I could both go to the ER.  I went ahead and took Gavin while Brian waited for my mom.  On the way, I called to cancel my appointment.  When we got the ER, he had calmed down a bit, but look awful.  I jokingly called him Edward from Twilight.  His skin was so pale, his eyes sunken in, and lips bright red.  He was so tired and pretty lethargic, but was terrified to fall asleep.  Every time he did, he would wake up panicking, sweating, and having an "attack".  It was horrible.  The waiting room was full, but it wasn't too horrible of a wait.
On the way to a triage room, his nurse from the night before recognized him.  She thought he looked a lot sicker.  The doc came in and ordered a breathing treatment and an RSV test.  The doc was shocked that he'd never had a test done considering his respiratory history.  The test was pretty unpleasant because they swabbed his nose and we had to hold him down while he was freaking out.  After the breathing treatment, Gavin perked up a bit.  The doc had decided immediately (because of history, the fact we'd been there the night before, and the fact Gavin was scared to sleep), that Gavin would be admitted.  Brian and I were at peace and actually a little bit relieved. 
We hung out in the ER for a while waiting for our room upstairs.  Aunt Allie came to help us entertain Gavin and Brian ran home to get me a few supplies to stay the night.  Gavin started asking for food.  They gave him some applesauce, but promised him a better snack when we got upstairs.  The frustrating part was that once we got up there, they said he was on a liquid diet until morning.  Thankfully, they gave him apple juice and then he fell asleep in Allie's arms.  The funny thing was, we stayed in room 4510 which is the same room we were in last time.  It felt like we had just been there even though it had been a few months. 
Gavin's RSV test came back negative, but he was still restricted to the room and staff who entered had to where the gear.  That was frustrating because no one knew why it was that way.  That meant Gavin couldn't leave to walk laps or play in the toy room.  Try containing an 2 and a half year old on steroids in a hospital room.  NOT FUN!
As far as the night went, Gavin actually slept pretty well and didn't need any treatments.  He woke up four times freaking out, but I was able to get him back to sleep.  We hung out at the hospital until noon when Dr. Voyles came in.  Grandpa came in watch him while I went to grab lunch in the cafeteria.  Dr. Voyles said that Gavin looked good and sent us home with a longer dose of steroids.  FUN FUN!  This child is wild on them!
Brian and I know that this is not the end of the story.  It will take Gavin years to out grow this.  We just have to take it one day at a time! 
 Not a fan of the didn't last long!
 Such a big boy holding the tube for the breathing treatment

Gavin found ways to entertain himself and I have to say, he was pretty creative!  He started taking diapers and putting them on the spots!

Thursday, September 13, 2012

"I want an A!"

I'm not sure why, but I feel like God is testing us.  Every one has struggles in their lives and we certainly have our fair share in our "normal" life.  However, I don't feel like our life has been normal lately.  Since the last week in July, it has been one major thing after another.  With two of our kids sick this week, Brian and I can't help but wonder what the big lesson in this is.  I told Brian, "God is testing us, and I want an A!"

Dress Up Diva

Firemen Visit

On Wednesday, four firemen brought their fire truck to preschool to visit.  The preschool always invites the Kindergarten and First Grade classes to come out and join them.  This year, I was able to be both teacher and parent!  I not only took pictures of my class, but of Macie, too!  The firemen showed the kids around the truck, let them walk through it, and even let them spray the hose!  One of them also dressed up in all of the gear so that the kids wouldn't be scared if they came into their house.  In the middle of their talk, they got an emergency call and had to rush off in the fire truck with the sirens blazing.  The preschoolers hadn't gotten a chance to spray the hose yet, so they were nice enough to come back.  The only bummer about that was that I didn't get a chance to watch Macie.  That night, she was telling us about all of the tips she learned!  

Macie and Madison

Gavin's Photo Shoot - 2.5

Aunt Allie came to do Gavin's latest photo shoot in our backyard!

ER - Trip One

I knew it was coming, but I was hoping it wouldn't....Gavin had to go to the ER Tuesday night.  I was so nervous about his breathing, so I brought him to bed with us.  I didn't really sleep and Gavin didn't either.  He dozed while I propped him up.  He hadn't had a full on attack, so we kept hoping, praying, and trying.  We put his head in the freezer, took him outside, and did everything we could to comfort him.  I let Brian sleep a little bit at this time.  Finally, Gavin was crying and asking to go get medicine (meaning he wanted to go to the hospital). Around 1:00am, I packed a bag and changed Gavin.  Brian got dressed and took him to the Emergency room. 
He said when they got there, Gavin was taken care of right away and in no time got a breathing treatment.  What helped was that Brian knew exactly what to say because we now have so much information and experience in this area.  They gave him props for knowing so much.  After two breathing treatments, steroids, and some bonding time with Daddy, they were able to come home around 4:30am.
Even though I was home, I didn't get much sleep at all.  The girls were up and distraught by everything that was going on.  I also felt guilty that I wasn't with Gavin.  I knew perfectly well that Brian was more than capable of being there, but as a mom, I felt like it was my job.
When Gavin and Brian got home, everyone in our family was able to sleep for about an hour.  One hour of peace.
We took Gavin to Miss Julie's in the morning and then Brian went and picked him up early.  Unfortunately, the story doesn't end here.  To be continued...

Tuesday, September 11, 2012

I Gotta Sleep Sometime!

Last night, Brian and I were up watching tv after the kids went to bed.  Gavin started crying and I could tell his breathing wasn't right.  Thankfully, we were awake and caught the "episode" in it's earliest stages.  We put his head in the freezer and cuddled him for a while.  We had the windows open and I think he started getting stopped up.  We learned after his surgery that the smallest cold could trigger something.  I'm just so glad that we were awake.  That is the second time I was awake and able to catch it.  We shut all of the windows, turned on the ac, and he was finally able to get to sleep.
Today, he was stopped up all day.  I gave him some medicine and put him to bed.  Once again, he woke up with breathing issues, but they were worse.  We were able to get it under control, but I'm so worried that tonight he is going to have an issue severe enough to take him to the emergency room.  I'm seriously worried about going to sleep tonight, but I gotta sleep sometime!  Pray for a good night!

Keeping Up with the Big Kids

Lilah is such a big girl now and is doing so much to keep up with her big brother and sister!  Tonight, I walked into Gavin's room and saw Lilah pulled up to the train table and they were all playing together.  Way too big way too fast!

Oops...guess this picture didn't get turned:(