Megan's got 47

Take the pledge to end the word. Why? Because you love her!

We saw the Pulminologist today for Megan. It went well. Megan cooperated and her saturation levels were 94....they seemed happy with that but we have a sleep study coming up. The doc also upped her Flovent from 44mg to 110mg. We will be starting Singular and Prevacid again as well to see if that helps. We go back in 2 months after the sleep study to discuss if we need oxygen full time here or not. He thinks she may need it at night while sleeping. No real answers to why her sats are low though so that is disappointing. Meg had Chest x-rays again today and the doc told me he would call on Monday to discuss. He is very thorough.

I found Wayne through PSF and LOVE his Tell a Joke Tuesday's. Joey and I read through his blog and had some laughs (good for the soul). So here is Joey's joke from last week that I already shared with Wayne.

What do you call a Mexican with a rubber toe?
.
.
.
.
.
Roberto

and here is my bad joke for the day
What do you call a woman with 1 leg?
.
.
.
.
.
Eileen

adding....

From my husband.....
There are 2 cupcakes baking in an oven.
1 cup cake says to the other "Boy its getting hot in here"
The other cupcake replies "Holy Shit a talking cupcake"

Can you believe this....in the middle of taking pictures today my camera went POP. Then it smelled like smoke. Joe came home from work and turned it on and POP. Smelled like smoke again....he thinks internal electrical fire or something.
ARE YOU SERIOUS????
We have Joey's confirmation on Saturday and probably won't get a replacement in time...

Hosted by Cecily and MamaGeek

Cheryl over at Twinfatuation (which I encourage you all to check out, she is GREAT) gave me the idea to share a photo that I love. She posted one of her husband and daughter and it made me think of the below photo and how much I love it. This is a part of Photo Story Friday which you can link to here

This was a time in our life where we were starting down a new path in life. Megan was the center of our universe and everything in my life centered around her diagnosis. I met all my friends at downsyn at this time and became a member of my local group. Joe was a rock, he never and still doesn't see the "Down Syndrome," he sees his wonderful perfect daughter and his smile and hers say it all. So thank you Cheryl for making me remember a poignant time in my life!

Just went shoe shopping with Megan as it was just me and her today. I splurged and bought her Lilli Kelly's because they fit her nicely, they are washable and she can wear them without socks for the spring and summer. Hey mom if you are reading this Olivia wants a pair now too, so I need your coupon for Olly's (in your kid stuff book).

So I bought a pack of playing cards at a going-out-of-business Kay-Bee store for .25 cents and the girls just asked me to play a game. I taught them 'WAR' and thought it would be way over their heads but they both got it and did a GREAT job. I am so excited for the potential of having card sharks in the family. LOL
They are both playing each other right now saying "one two three four I declare a princess war"....so incredibly cute!

So Olivia requested stickers to continue on making crafts or as she calls it, "her homework"....she finished and wrote her name on the back.

I hugged her and told her it was awesome and she is such a good writer.
She then proceeds to make me a picture to hang on my wall.

She says, "Mommy look"....she had written MOM on the back of it....O-M-G!!!!
We practiced it the other day but only once and she remembered, I know it is an easy word but I am just shocked! And soooo proud!

Today it is Paper Flowers now she is constructing a 'band hat'....I love Olivia's imagination.

Olivia's is on the left, Megan's on the right

I would say ME! I am the problem when my daughter says, "I can't do it, you do it" on a regular basis.

We are working on writing today. Megan is working on "M" and Olivia is working on "Bissol"....Megan will not even pick up the pen w/o saying those dreaded words. So today, yes today, I will no longer do ANYTHING to help Megan, she will do everything herself. Geeze, why have I played her games for so long. I now refer to myself as her little Monkey, she tells me what to do and I do it. To avoid fights and time, I do it, except after today.....

Oh crap Megan is calling me, she needs me to wipe her butt :)

This picture would have been awesome if it was Megan in the swing beneath Olivia.














Camera is pretty good, now we just have to work on the person taking the pictures ;)

Here is a pic of Megan drinking Powerade today at the playground. Her eyes were so stunning in the picture that I played around with Photoshop to get her eyes to stay blue and the rest turned to black and white. I had trouble making the outline of her eyes go away and to get the blue to stay more realistic. Help if you can! Thanks.

The Surprise




The Basketball



The Cake



The Games




The Bowling





The Next Morning

So when the boys arrived (4 of them, 5 were invited) they said they thought Joey knew about the surprise. I said why do you think that, one boy said "because he came up to me at school and asked me if I was invited to his surprise party"...WHAT, "yeah, he said unnamed kid told him in gym class."

What would possess a kid to ruin a surprise????? not to mention how the heck he knew.
I called all the moms who told me they were not going to tell the boys until that night so that they wouldn't ruin the surprise....so I guess somebodies mom told early. And all a kid has to do is tell 1 person before the entire school finds out.

So I am assuming the boy who didn't show up was the tattler or at least the other boys pinned it on him. OH BROTHER.

So I knew before Joey got home that he knew....so quickly I had all the people (family and friends) go hide in Joey's room. My parents brought him home and me and Joe pretended like nothing was going on, we hid all evidence of a party. Joey was peeking in the living room and basement and looked puzzled. He then walked his bags up to his room where everyone yelled SURPRISE, although he was not really.

Oh well, there is always a next time.
Pictures to follow.

SO excited today my new camera came via UPS man! YAY!!!!!
Just in time for Joey's surprise party tonight!!!!
I hope I will get some really good 'surprise' shots of him and also some good bowling shots tonight.

1st the Camera. I didn't get what I really wanted, a Canon Rebel Xsi. 1) because we didn't have the money anymore after Joe totaled his car and 2) I had a zoom lens from a previous camera (a camera I bought when I wanted to be a photographer back in the day but realized you needed some talent) It was a 35mm Minolta. Joe's co-worker told us our zoom lens was compatible with the Sony model so we bought the Sony Alpha DSLR-300....it will save us a few hundred dollars on buying a good zoom lens since we already had one....so here is the camera we bought:


Now onto my bug. Olivia. She is getting so big and mature...she is so much fun to hang out with. She comes up with such good ideas. The other day she suggested we make paper dolls. So today we went to AC Moore and walked around picking out paper and yarn. Olivia proceeds to tell me "No more stopping, we need to go right home and make our dolls"....she knows me so well, LOL! So we drove home and got to work. Here is our finished product:


Olivia is also doing really well with writing her name. She started off writing her letters all different sizes and all over the paper but has since started writing much better on the lines and in proportion to each other. Here is a recent writing:

Great updates all around so far.

No cardio issues, "her heart looks beautiful" in the doctor's words. The day could not have gone any better. Megan was happy and in a good mood. The nurse asked if we wanted to try the echo w/o sedation and I was up for that, of course, cause I was concerned being put under would mess with her sats and they would end up keeping us there. All the nurses came around to give the big girl a high five and she collected about 15 stickers. A little fussing but a great job on Megan's part. We are forever released from Cardio so we never have to go back!

As for todays eye appointment, no surgery on the eyes but need to follow up in 4 months, her prescription has gotten stronger.

So now we wait to go to the Pulminologist at the end of the month. Hopefully he will have some other ideas on why Megan's sats are low.

Hi all, we have a busy schedule coming up with Megan and I would love to get your prayers. She goes in Tomorrow to CHOP for a sedated echo to check her heart. They want to make sure her low saturation levels are not from any missed heart issue. My concern is that they knock her out and her sat levels are so low they don't let us go home. Next Tuesday we go back to the eye doctor to see if she requires surgery or a stronger prescription for her A pattern estropia, so if we are stuck in the hospital we miss this appointment for the 2nd time and they get so mad....

I am truly worried about Megan she just has not been herself since her bout with pnuemonia in Nov/Dec. We see the pulminologist at the end of this month. And of course she is going through transition for Kindy and has missed her ST eval 2 times already, the report was due this Friday so the ST eval will be missing (UGH!)

Leader: We adore you, O Christ, and we praise you.
All: Because by your holy cross You have redeemed the world.

Jesus, your body is prepared for burial. Joseph gave you his own tomb. He laid your body there and rolled a large stone in front of it, then went home. What a sad day it has been for so many people.

As a child, sometimes I try to keep everything for myself. I find it hard to share my things with my brothers or sisters and with my friends.

As an adult, I can be selfish too. I can accumulate things and keep them for myself. I try to make sure I have what I want before I share what I have with anybody else.

Help me think of Joseph of Arimathea, who risked his own life as he accepted Jesus' body for burial. Help me think of how Joseph loved Jesus so much that he gave him his own tomb.

My Jesus, beside Thy body in the tomb I, too, would lie dead; but if I live, let it be for Thee, so as one day to enjoy with Thee in heaven the fruits of Thy passion and Thy bitter death.

Our Father.... Hail Mary.... Glory be to the Father....

Leader: Jesus Christ Crucified.
All: have mercy on Us.
Leader: May the souls of the faithful departed, through the mercy of God, Rest in peace.
All: Amen.

Leader: We adore you, O Christ, and we praise you.
All: Because by your holy cross You have redeemed the world.

Jesus, how brutally you were put to death. How gently your are taken from the cross. Your suffering and pain are ended, and you are put in the lap of your mother. The dirt and blood are wiped away. You are treated with love.

As a child, sometimes I treat others better when they're sad or in pain. When somebody dies, I become very gentle and kind. I notice the good and kind things people say about those who have died.

As an adult, I seem to be kinder when someone dies. If only I could learn to see the good things about them while they were alive. If only I would tell those around me how much I love them, while I still have the opportunity to do so.

Help me look for the good in those around me, especially those I love the most. Help me live this day as if it were the last. Help me become a more gentle and loving person through my greater appreciation for those around me.

O Mary, Mother most sorrowful, the sword of grief pierced thy soul when thou didst see Jesus lying lifeless on thy bosom; obtain for me hatred of sin because sin slew thy Son and wounded thine own heart, and grace to live a Christian life and save my soul.

Our Father.... Hail Mary.... Glory be to the Father....

Leader: Jesus Christ Crucified.
All: Have mercy on Us.
Leader: May the souls of the faithful departed, through the mercy of God, Rest in peace.
All: Amen.

Leader: We adore you, O Christ, and we praise you.
All: Because by your holy cross You have redeemed the world.

As Jesus hung on the cross, he forgave the soldiers who had crucified him, and prayed for his mother and friends. Jesus wanted all of us to be able to live forever with God, so he gave all he had for us.

Jesus, let me take a few moments now to consider your love for me. Help me thank you for your willingness to go to your death for me. Help me express my love for you!

My Jesus, three hours didst Thou hang in agony, and then die for me; let me die before I sin, and if I live, live for Thy love and faithful service.

Our Father.... Hail Mary.... Glory be to the Father....

Leader: Jesus Christ Crucified.
All: Have mercy on Us.
Leader: May the souls of the faithful departed, through the mercy of God, Rest in peace.
All: Amen.

Leader: We adore you, O Christ, and we praise you.
All: Because by your holy cross You have redeemed the world.

You are stretched out on the cross you have carried so far. The soldiers take big nails and drive them into your hands and feet. You feel abandoned by the people you loved so much. People seem to have gone mad. You have done nothing but good, yet they drive nails through your hands and feet.

As a child, sometimes I hurt others. Sometimes I join with friends and decide not to like another. We gang up against another and cause them hurt and pain. Sometimes I say or do hurtful things to my brothers and sisters. I can wonder what they'd think about themselves if they believed everything I told them about themselves.

As and adult, sometimes I discriminate against others. Even without thinking, I judge others because of their color, intelligence, income level or name. I forget that I am to live as a brother or sister to all people. Sometimes I use harsh words when I speak to my children and family members. I can find it easy to look for something that isn't very important and make it very important.

Help me look again at the people around me. Help me see the hurt and pain I have caused in others. Be with me to help me make amends for the harm I have done.

My Jesus, by Thine agony when the cruel nails pierced Thy tender hands and feet and fixed them to the cross, make me crucify my flesh by Christian penance.

Our Father.... Hail Mary.... Glory be to the Father....

Leader: Jesus Christ Crucified.
All: Have mercy on Us.
Leader: May the souls of the faithful departed, through the mercy of God, Rest in peace.
All: Amen.

Leader: We adore you, O Christ, and we praise you.
All: Because by your holy cross You have redeemed the world.

The soldiers notice you have something of value. They remove your cloak and throw dice for it. Your wounds are torn open once again. Some of the people in the crowd make fun of you. They tease you and challenge you to perform a miracle for them to see. They're not aware that you'll perform the greatest miracle of all!

As a child, sometimes I'm tempted to repeat stories I know are unclean and disrespectful. I sometimes try to act grown up by using crude and bad words.

As an adult, sometimes I repeat stories that are disrespectful of others. I can entertain thoughts that are not clean. Sometimes I give the young people around me a bad example to follow.

Help me to keep myself pure and clean. Help me say things that build up the people around me. Help me overcome worldly desires that I may become more like Jesus. Help me set a good example for others to follow.

My Jesus, stripped of Thy garments and drenched with gall, strip me of love for things of earth, and make me loathe all that savors of the world and sin.

Our Father.... Hail Mary.... Glory be to the Father....

Leader: Jesus Christ Crucified.
All: Have mercy on Us.
Leader: May the souls of the faithful departed, through the mercy of God, Rest in peace.
All: Amen.

Leader: We adore you, O Christ, and we praise you.
All: Because by your holy cross You have redeemed the world.

Jesus, your journey has been long. You fall again, beneath your cross. You know your journey is coming to an end. You struggle and struggle. You get up and keep going.

As a child, sometimes I fail time and time again. I find it hard to get along with my sisters and brothers, sometimes I'm not honest, sometimes I'm lazy. I'm tempted to stop trying. It's just too hard sometimes.

As an adult, I often feel I should have conquered my weaknesses by now. I become discouraged when I'm confronted by the same problems over and over again. Sometimes I get weary. When I have health problems, I can become discouraged and depressed.

Help me think of the cross you carried. Help me continue to hope that I can make the changes in my life I need to. You didn't give up. I can have the strength to get up again as well.

My Jesus, by all the bitter woes Thou didst endure when for the third time the heavy cross bowed Thee to the earth, never, I beseech Thee, let me fall again into sin. Ah, my Jesus, rather let me die than ever offend Thee again.

Our Father.... Hail Mary.... Glory be to the Father....

Leader: Jesus Christ Crucified.
All: Have mercy on Us.
Leader: May the souls of the faithful departed, through the mercy of God, Rest in Peace.
All: Amen.