Easter Shindig!

Tuesday we had a little Easter get together for R. and her friends H. and N. Of course this mom took tons of pictures so this post is loaded with them.

Here is little mister N. He is so adorable and I couldn’t help but snap quite a few pics of him.

H. and R. decorate some yummy sugar cookies. Thanks Jodee for the yummy recipe! We even made homemade butter cream frosting.

H. being cute as can be!

And the same for this little cutey pie!

R. picking up Easter Eggs during the Egg Hunt. She wasn’t so sure about it and kept wanting to fill her bucket and dump it out!

N. kept trying to take the eggs out and put grass in his bucket. And if it wasn’t going in the bucket it was going in his mouth. He is a total boy!

H. was so funny. She did an excellent job of picking up the eggs. Good work H.’s mommy on teaching her to pick up good! She is such an expressional little girl. She always has the cutest expressions on her face whether smiling, laughing, crying or squinting. Totally Adorable.

H. was so happy and kept trying to give R. hugs and loves. R. on the other hand is a little sensitive and tends to run away. We are working on that!

And finally a shot of N. attempting to walk. This was one of my fave pictures from today. He is so adorable.

We also dyed Easter Eggs and sat on the porch in the wonderful warm weather and visited while the kiddo’s played. It was a very enjoyable afternoon.

R. skipped her nap today to hang out, so we did treatments early and she was off to bed early also. Hoepfully we can get on a little better schedule so that we nap earlier so we can enjoy the beautiful weather we’ve been having in the afternoons.

The Vest and the IPod Touch

I guess i never really explained much of what the vest is about and why we have been so excited since getting it.

Up until now, we did treatments twice a day by using these little pink pounders (percussors) to pound 10 different spots on R’s body. We would pound each spot for 2 minutes. The purpose of this we to break up the mucous in her lungs and help her to move it out of her lungs. We also do albuterol nebulized medication to help open her airways up to allow the mucous to move out. This process took between 20-30 minutes depending on how well she tolerated it at the time.

The vest basically takes the physical pounding out of the picture. We strap R. in this vest which has an internal air bladder that inflates and then pulsates or shakes. We still use the albuterol nebulized medication to help open the airways.

R. is super good about her treatments. She sits on the couch by herself with her vest on and her nebulizer strapped to her head. She watches her favorite music video’s (Taylor Swift – This girl loves her some Taylor Swift) on “Her” IPod Touch. (this was originally bought by her daddy for workouts. He still uses it, but it sure does come in handy for this little miss. She uses it during her treatments and doctors visits. )

The vest has been so good for R. She gets a 30 minute treatment all over her body vs. a 2 minute pounding on 10 different spots. She sits so well and It has been nice for us too. We can sit next to her and watch Taylor Swift with her, or we can get some much needed work done around the house – dishes, sweeping, breakfast and supper made, etc.

We are very thankful she was able to get the vest. It’s amazing and we love it. They sent a black vest, however we ordered a hot pink one. I just figured they didn’t have one in stock, and honestly I would be totally OK if they had sent the ugly blue vest as regardless of the color, it is a vest and it serves the same purpose. Well we got a message on my phone the other day saying that they are shipping out the pink vest. So she will have a hot pink vest! YAY! How cute will that be!

What We’ve Been Up To!

 

We’ve been busy playing outside. 

Busy practicing our driving skills

Busy running away from daddy

Busy playing in the Garage

Busy swinging in our pink swing

Busy playing catch and go get it with the ball

And busy going for walks to the park

We’ve been busy.  BUSY BUSY BUSY.

And we are loving every minute of it!

We Got The Vest!

Rylee got her new vest this morning. We are so excited. She did awesome with it. We expected a few tears but none were shed. They told us to start her at 5 minutes and work up to 30 minutes but the trainer brought it to our house and set it up for 20 minutes. She figured if she started crying we could shut it off but she did so well and sat so nicely that she did the entire 20 minutes! We were so proud of her.

We took a small video of her and a picture but of course they are still on the memory card and I am headed back down to finish painting the playroom. Pictures of both things will come later! YAY HAPPY SATURDAY!

For The Love Of Sidewalk Chalk

This girls mommy loves side walk chalk. Of course only crayola side walk chalk is good enough because all of the others totally lack the brightness of colors. I could sit outside and draw on the sidewalk all day.

Apparently, my love is rubbing off on my little precious girl. She appears to really be enjoying her first go at sidewalk chalk.

And of course, some little smiles from when she was watching her daddy shovel snow off of the lawn. Daddy didn’t want the snow with the gravel in it from scooping the driveway to melt on the grass and leave rocks shooting from the lawn mower this spring so he scooped the snow. While doing this he made quite the sound effects and R. was eating it up!

Daddy’s Girl

This girl is a total daddy’s girl.

She loves to put on daddy’s hats

She loves to sit with daddy while he is on the computer and to watch Taylor Swift on daddy’s ipod touch.

She loves to hold daddy’s ipod

She loves to lay on the floor and watch tv just like daddy.

She is just like her daddy. A total Daddy’s girl.

Time Changes are HARD

This time change was tough for everyone in our house.

R. woke up late the morning after we changed the clocks. So we figured since she had a late breakfast, we would have a late lunch which lead to no nap, a late snack, and a late supper. While we were eating supper R. decided it was time for bed. She started to doze off and since she is in a booster seat and not a high chair, it was like when you were in school with your head on one hand and would start to nod off. Slowly her head would drift towards the side, then she would catch herself and sit back up straight and within seconds it would be falling again. Poor baby. But of course we snapped a picture first before taking her out to snooze in my arms for a while before nebs and bed.

She did however sleep from right then until 8:30 am the next morning. After that, we were back to normal. So the time change was only tough for our little one for one day. Well more like from 9:30am until 7:45 pm otherwise known as the the shortest day she’s had.

And as for the rest of us, well we are still trying to recover from the time change. We are however enjoying the extra daylight in the evenings.

Blue Skies

The reason we have been slackers in the blogging area is because we have been enjoying this…..

Blue Skies…

Warmer Temps….

Beautiful Days….

We have been spending our days outside enjoying the nice weather. At night we are pooped and have been relaxing and taking it easy.

I am beginning to think that this is the beginning off the speeding up in our life and we are loving it.

YAY for SPRING!

Our Miracle Baby!

Saturday morning we attended the Children’s Miracle Networks State-a-thon. R. was invited because she is considered a miracle baby, or a child born with an illness or disease who then in turn is eligible for assistance through the CMN. We are very gracious for the assistance we have already received through this organization.

The theme for the event was “Jungle”. In the center of the room they had a “tree of life”. Each miracle child’s name was listed on tree.

Here we are by R’s name. We also received t-shirts to wear while in attendance. They had a lime green tree on the front and on the back had the sponsors from the event along with the word “EXPLORER” All miracle child families were Explorers where, college participants were Villagers and CMN organizers/leaders were Safari Leaders.

The facility was very well decorated with vines hanging from the ceiling, animals on the walls, & animal huts all throughout the room.

A quick shot of daddy and R.

All of the miracle children posed for a quick picture. We were honored to meet various families who shared their stories with us.

R’s name on the tree.

When we were sent the invitation, it include a little questionnaire to fill out. One of the questions was what the child’s favorite jungle animal was. R’s. was the giraffe and I am sad that I did not get a picture of our morale leader the giraffe. He stayed up till 2:30am sewing his own costume which consisted of yellow pants with brown spots and a yellow shirt with extra long arms which he threaded long poles through to act as long front legs. Very creative.

This picture, however, was of another creative morale leaders group – The panda group. They referred to themselves as the Kung Fu Pandas though and were carrying toilet paper tube nun chucks.

A little entertainment from the drum line.

Another shot of daddy and his girly! She found these smelly poster markers and would not leave them alone.

This was from the dance off. The morale leaders taught the entire group in attendance a morale dance and boy was it long. It was a mixture of about 15 songs and ranged from cheerleader arm moves to crazy turns to disco. The room was divided and the two groups held a dance off.

Participants were encouraged to mingle with the families and hear their stories, ask questions, and play with the kids. R. attracted various people with cameras and of course she shows off for the camera. We do think she is adorable though, so we understood the attraction. I may be a little biased though because she is my miracle baby.

We also shared our story with everyone, danced, watched various entertainment groups and mingled with the other families. We had to leave early because R. needed a nap badly – she was getting quite cranky. We were sad we could not stay because we knew the activities for the afternoon would not disappoint. I just saw some photos from someone on facebook and it looked like they had jello wrestling, limbo, parachute, and the miracle families could also participate in a hot air balloon ride. We didn’t go back to the event because we had other commitments to attend that night.

We will definitely be attending again in the future.

Wonderful Wonderful Sunshine

With the crazy beautiful days we have had here lately, I haven't had much time to edit the pictures let alone move them from my memory card to my computer, so therefore again no pictures. Sad. I promise, since tomorrow is suppose to be cloudy and yucky, that I will get them uploaded.

The weather has been amazing. I love pants and sweatshirt weather. The weather where you can go outside in just jeans and a sweatshirt and not be cold but not sweat. The weather where when you go on a walk in the formentioned attire, you don't sweat much but can still get a fairly brisk walking pace going. I love love love it!

The last two days have been just that. And we took total advantage of it on Wednesday. We met up with some friends for a stroller group walk. We took our time and walked about 3 miles and gabbed and gossiped and talked about the stars - well we talked about how one of the walkers with us met "NANA" from the Hills TV show on MTV - Spencers Grandma that is. Hahaha. It was hilarious. The walk was so much fun and great to be outside and among great friends. The kiddos' also loved it. R. very much enjoyed visiting with H. and N. I have a feeling this group is going to have a lot of fun this spring and summer.

After the walk, we headed out to the Pizza Ranch for some lunch - I know, we go get our excercise and then head to eat Pizza. Nice huh. Well, it's better then the alternative - McDonalds. And I did only have 2 breadsticks and a big plate of salad (of course slathered in thousand island & cheese and with a nice helping of cottage cheese and macaroni salad on the side) OOPS. We did have fairly good intentions.

We then made our way back to N's house where the kiddos played and played and played - all afternoon. N. managed to sleep during the walk and again in the afternoon (he is only 9 months old, so two naps is a must). H. fell asleep around 4 pm. and my little precious R. decided that it was too much fun playing with N's toys so she skipped her nap all together. Little stinker. She was deffinately pooped after the day.

And then for today - our 2nd beautiful day and we spent it at the Castle (now doesn't that just sound fun?) Well it would be extremely fun if it was a castle with real princesses and fairies and all that jazz. But this is the Castle of Care and this is the home of the childrens hospital and childrens specialty clinics where R. is seen for her CF care and check-ups. But on a positive note, It was an overall great appointment. R. has gained 2 pounds in the past 3 months and shot up about 2.5 inches. She's getting tall.

The doctors were pretty happy with her progress and were very happy that we still have no cough/illnesses going around our house. YAY. We talked alot about what we should be doing for drinks/food/meals and how many enzymes she needs with each meal and snack. We also talked about her treatments. It was discussed what the doctors protocol was for starting the mucous thinning nebbulized treatments and if R. would benefit from them right now and we determined that it was not neccessary at this time.

And the great news from this appointment was - R. IS GETTING A VEST! and not only any vest - a hot pink vest! We are so excited. As long as insurance is on board and all checks out, the vest should be shipped early next week. This means no more manual pounding(performing CPT) on R. She will just be able to put on the vest and shake away. If you are wondering what the vest is and how it works, just take a jaunt over to you tube and search for CF vest kids and watch them go. It really Shakes them up.

So hopefully by this time next week we will be sitting here shaking away.

And one other great thing about today - Our new recliners were delivered. They are very comfy and as I sit her typing in one of them right now, I am just happy as can be. Now to rearrange a little more and clean and yada, yada, yada.....Good thing tomorrow is going to be cloudy and dreary so I can do a little work inside.

So I promise, tomorrow will be a little more vibrant with some adorable pictures of R. (I can say that right - because I think she's adorable and she is my daughter). I have high hopes that SPRING IS HERE - and hopefully it stays around for a while.

Spring Fever!

I really Feel that we haven’t done a thing lately.  We have, but I have no documentation/photos of anything hardly, let alone have I removed the pictures from my memory card and placed the pictures that I do have onto my computer.  It’s just been one of those weeks months. 

Last week we were recovering from our time with the L. man so we didn’t get a whole lot done in terms of tot time.  We did some puzzles, some pipecleaner/sugar shaker activities, and some coloring.  We also played outside a bit, went on some walks, and relaxed.

During the weekend, we finished the flooring in the basement so now all goals have been to move/rearrange our living spaces.  The downstairs is going to be made into a playroom for R.  Starting in June, we will be having a little boy come over for a couple of days each week so we will also play down there when he is here.  My hopes is to play downstairs during the day, everyday – other then when we are outdoors, and play upstairs in the evenings with dear hubby gets home. 

So this week hasn’t been off to much a better start in terms of tot time.  First excuse goes to the gloomy/dreary/cloudy weather we have been having.  It’s just depressing to not have any sun.  Second excuse goes to the rearranging that is happening and finally the last excuse is the mildly busy schedule that we have.  This week I have a meeting, a doctors appt for R. and a phone conference call.  UGH! 

But I must say that these really aren’t any good excuses for not doing much with the tot time.  We have been doing puzzles like crazy – I just bought R. 6 new Melissa and Doug Puzzles on sale but she won’t be getting them until she gets her vest which is hopefully this week – or else she’ll get them for Easter.  We have also dot painted, played with her Mr. Potato Heads, played with her stacking/nesting blocks and read lots of books!  Yesterday alone I think I read fidgety fish 25 times.  She was loving it!

Today we will continue with the puzzles – I am so impressed that she can do a 7 piece puzzle! – read some more, play, and hopefully get outdoors.  I have to meet with some great girls this week about helping raise money/join us for the Great Strides walk so I will also be coming up with a little presentation to give to them at the meeting, along with some possible fundraisers to do.

And so the rest of the week will come and go and again I will probably feel as though we havent done much.  I think a big part of the problem was that we were doing each of the separate colors – 1 color/week and it was getting sort of monotonous.  R. also wasn’t getting much out of it other then repeating the color names when I would say them and exposure to the colors.  She could sometimes identify the color I asked her to on flashcards but I was beginning to think even that was luck.  So I think we are going to take a break from colors in that format and maybe try something else.  Not sure what yet! 

Well that was a very random rant about random stuff.  If you made it to the end – you’re awesome! 

Pray for some sun to be sent our way and for a possible vest to come to R.  Hopefully our appointment goes good and R. has grown and is in good standing – Also pray for no bacteria in her culture!

Well happy Tuesday everyone and Happy Green Day tomorrow!

Winner Winner Chicken Dinner!

The winner of the Team Roses for Rylee shirt goes to Jodee from Follow the Leaders!

Thank you so much for your comment and donation!

It will be mailed to you as soon as we get them - which will probably be closer to the walk in June. Email me with what size you would like - They come in all childrens and adults sizes! Let me know!

Thank you again! And Happy Weekend Everyone!

18 Month Pictures

 

Here are R’s 18 month pictures.  I can’t believe she is already 18 months.  It seems like just yesterday she was a tiny baby.

This seemed to be the look of the day – Mouth wide open.  She is such a goofball.

 

Close Up

Innocent – HAHAHAHA – Ok, I’m funny!

 

I think this one is my favorite

And of course – Silly R.  She is such a goober!  I Love Her so much!

Even though the indoor pictures are getting better, I can’t wait to get back outdoors to take some pictures.  R. does not like standing in the snow, so pictures outdoors are a little difficult.  She cries and frowns and scowls.  Hopefully this spring we will get some great pictures!

I am now booking sessions for the “Spring Fever” special.  - packages start at $50.00 and include sitting fees, 30 minute sessions outdoors, and 5 images with printing rights.  Sessions must be booked before March 31st and take place before April 30th to get the special pricing.