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Using the digital kit, "Running and Jumping" by Vinnie Pierce.

Wednesday, April 28, 2010

Little Miss Sunshine


You are 4 months old today and so incredibly sweet! You are full of smiles whenever you see me or your big sisters. Your therapist was so impressed today with your new range of motion. You keep surprising everyone!! You also rolled over the other day, from your back to your stomach!!!! Your other new thing is trying to do crunches when you are on your back! It's pretty cute.

You had your 4 month old well child check today. Unfortunately you are not gaining weight like you should be. You were in the 37th percentile at your 2 month appt and you are in the 8th percentile now. We are starting to supplement with formula after you nurse. We are using the formula that is thickened with rice starch and as a side benefit it seems to help your spitting up. We will go back in two weeks to get a weight check and go from there.
Next up other than that is picking up your contacts in about a week! Lets hope I catch on quick.

May is almost here! Its going to be a great month. We have our Frio trip at the end of the month and I am so looking forward to it. We could all use some rest and relaxation around here.

Your letters will be getting a new look in the next day or two! It's super cute but really how could anything with your picture on it not be!?!

P.S If you're reading Marley's Letters leave us a comment or follow us so we know who you are!

Saturday, April 24, 2010

Has it really only been 4 months?

Dear Marley,

I think we are finally done with "procedures" for awhile. Thursday marked the last one. You had to go to Dell Children's and go under anesthesia yet again. This time to be measured for contacts.
I was kind of dreading the thought of putting contacts in your eyes until we started having to deal with the glasses. Between trying to keep them clean and trying to keep them on your face its a full time job! Well plus the couple of times I've left the house without them. I mean really how many times did I have to get new glasses as a kid because I lost them?! At least I haven't lost yours so far.

Anyway all that to say that I am now looking forward to your contacts. Dr. Awesome is going to go with us to pick them up so that she can learn how to put them in also. We are so blessed to have so many people that love us.
Speaking of people who love us, your auntie Wendy is down visiting from Oregon for a week. She already loves you and your sisters so much that she took her vacation week to come meet you. She and I have been friends for a long time(since freshman year of high school). I'm sure she will have some good stories to tell you when are older... much much older that is.

We are surrounded by such amazing people both locally and long distance as well. When I look at our life I can clearly see how God has handpicked each of the people that are in our life to be there for specific reasons.
I still have difficult days when all I want to do is question " Why did this have to happen to you?" but I really hope that overall as you grow you know that we are blessed beyond measure. You are truly loved, first by God and then by countless others.

Tonight in her prayers Rory first thanked God for baby Marley and then for popcorn. You rank higher than popcorn with her. That's pretty impressive!

Oh yeah and before I forget you can now raise your arms above your head!!!!! With a little help that is but still it's a huge step forward in your range of motion.

With that I'm off to bed because as usual your big sisters will be up at the crack of dawn. Could you please work on teaching them to sleep a little later?

Friday, April 16, 2010

I can't explain myself, I'm afraid, Sir, because I'm not myself you see. ~ Alice "Alice in Wonderland"

Dear Marley,

It's been raining for a few days and my mood matches the sky. No real reason to speak of . When I stop and think about it there is no real reason to be melancholy. You are doing excellent. You get cuter by the minute. I think I'm going to miss your pink glasses when we move on to contacts. Your eyes already look tiny now when you don't have them on.

Our Dallas trip to Scottish Rite was pretty pointless this time but it makes sense to keep going in case you need any help from them in the future. The big girls were pretty tired of being in the car but they were good over all. They both got their hair cut. The lady who cut Rory's hair was kind of ridiculous though. I think she thought Rory was 12 instead of 2. She must have told her to look down about 50 times. After being exceptionally compliant for about 20 minutes Rory turned around and told the lady " I no look down any more!" She's a funny kid. Hopefully your hair stays short for a long time. The thought of doing 3 girls hair makes me a little crazy.

We had a fun day today. You had Occupational Therapy this morning. Ms. Amanda sure does love you. You weren't too happy with her today though. You didn't seem to be in pain just annoyed to be woken up from your morning nap.

After OT we all went to Ms. Becca's house to play. Your big sisters had a blast jumping in the bouncy house and playing princess. I can't wait till you are big enough to mix it up with Leah and Zeke. They will definently need a 3rd partner in crime!

Not sure if I mentioned it before but some of your blood tests came back with elevated liver enzymes. They think it might be a reaction to the medicine you take for reflux so we are going to take you off of it for awhile and then recheck your enzyme levels. Hopefully your reflux has gotten better and it won't cause you any pain to take you off the meds.

There are so many decisions to make for you on a daily basis and I have no idea if I'm making the right ones or not. I guess only time will tell. Meanwhile I am going to enjoy every second of your babyhood.. It's already flying by too fast.

Friday, April 9, 2010

Sugar and spice and everything nice....

Dear Marley,

Wow it's been quite the week around here. All of the cousins in one house without their parents has made for many adventures. Jacy (4yrs) , Delaney (4yrs) , Lily (3yrs) , Rory (2yrs), Jadyn ( 7 mos) and you . 6 girls 4 years old and under has definently given your mamaw and I both more gray hair. From jumping naked on the trampoline to digging in the dirt they have pretty much done it all this week.

You also got your glasses this week. You are so cute in them! Your uncle Chris says you look like a Japanese anime character. They make your eyes and your long eyelashes look gigantic. It's really fun to see you noticing more and more things around you now that you can actually see clearly. We went grocery shopping yesterday and you were smiling and talking to all of the brightly colored items on the shelves.

Some days its so easy to forget that there is anything different about you. You appear to be doing everything a 3 month old should be doing. You are trying to reach for your toys and you smile and coo at everyone and everything. But then I see a picture of one of your sisters when they were small with their arms raised over their heads or their legs stretched out and I remember.... I wonder if we will ever play " How big is Marley?" or if the fact that you won't bear any weight on your legs right now is going to bear signifigance for your future mobility?

Every time I wonder any of these things out loud everyone is quick to silence me and tell me that you will be fine. I feel like there is such a fine line between blindly believing that you will be okay and being pessimistic enough about your future to make sure that you are getting all of the help and services you need. RCDP in and of itself is so rare and you fall into an even rarer category because you are thriving and doing many of the things you "shouldn't" be able to.

I know that I need to learn to simply enjoy every day of you being you instead of just holding my breath and waiting for the other shoe to fall.

I am so thankful that you are a part of our family, you have already taught us so much in 3 short months and I can't wait to see what the rest of your life holds both for you and for us.


Sunday, April 4, 2010

You are braver than you believe, stronger than you seem, and smarter than you think. ~ Winnie the Pooh

Dear Marley,

Your cataract surgery on your left eye was on Thursday. It went perfect! Dr. SeeGood was really impressed with how well your right eye has healed. We also were able to order your glasses. They are hot pink! We should be able to pick them up this week. I am so excited for you to be able to truly see the world around you.

You're consistently sleeping 10-12 hours a night. It's amazing! You are ready for bed around 9:30 every night and you don't wake up until 7:00 am at the earliest. Do you think you could teach your sisters that trick?

It's Easter sunday today. I can't wait till next year when you will be able to hunt eggs with the big girls. Delaney and Rory had a great time running around the yard and collecting the eggs. They are wild. I'm sure you are going be just the same.

Delaney and I had a long conversation last night about the real meaning of Easter. I hope all three of you girls always know how important this holiday is. It's hard for me to imagine that anyone could love you more than I do but Jesus absolutely does. That knowledge and faith is what is carrying us through all of this and I know it's what will carry you through as well.

We also attempted to take pictures in the bluebonnets this weekend. It's a total Texan thing to pull off the side of a busy highway and make your kids sit on the side of the road in the weeds just so you can take pictures. It was bumper to bumper traffic on Willow city loop and Delaney and Rory were freaking out the whole time. I think they were under the impression that we were going somewhere really fun. They were not thrilled when we made them sit in the dirt amongst the pretty flowers. We were trying to get Delaney to hold you in her lap and you weren't real happy with that. I'm sure it had nothing to do with the fact that it was noon and the piercing sun was shining in your eyes. All due to my great planning. Oh well there's always next year!

Sorry this letter isn't better. It's almost midnight and I'm beat.

More tomorrow.