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

Wednesday, November 17, 2010

Photo Carnival

These two pictures are my current favorites of Marley. The first was taken about 6 months ago in a waiting room at Scottish Rite hospital and the second was taken last week at Ronald Mcdonald house a couple hours before she had her spinal surgery.
She hasn't worn her glasses since shortly after the first picture was taken so its fun to see how different they look on her now! I also love that she is so relaxed and happy in both pictures. I on the other hand was a nervous wreck! Looking at these just reminds me how far she has come and makes me excited to see what amazing things she is going to do next!

This post was inspired by a photo carnival at Love that Max ( one of my new favorite blogs!)

Saturday, August 21, 2010

Just thinking about you puts a smile on my face

Marley girl,

Wow 2 and a half months goes by fast. So much has happened since the last time I wrote to you. We've gone to Alabama with the other RCDP families, taken a mini vacation with your cousins ( you've even gained a new cousin already! ) moved out of town, and your big sister started school. It's been quite the three ring circus around here.

You are almost 8 months old. How can that even be possible!?! It seems the tighter I try to hold on to every moment of your babyhood the faster it slips away. You are sitting up pretty well and rolling everywhere!!!! You continue to put everything in your mouth and suck both of your thumbs at the same time. I tell your mamaw all the time that you are perfect and that really isn't a far stretch from the truth. As long as you aren't hungry or tired you will play on the floor with your toys for hours. And as far as sleep goes you are still sleeping 10 - 12 hours a night. You're amazing.

Sometimes though I wonder if you are getting everything you need from me. Some days I'm stretched so thin between all 3 of you that I don't know if I'm covering all the bases or not. I'm doing the best I can and hopefully its enough.

I love you baby and I promise I'll be back before 2 and half months go by!

Wednesday, June 9, 2010

Slipping into the future

How has it been a month since I've written you a letter?!? We've covered alot of ground in the past month.

You are grabbing for toys and putting everything in your mouth! You try to suck both thumbs at the same time. You love to chew on your Ikea bunny. I think it's almost time for him to take a trip through the washing machine. He's getting pretty yellow!

We bought you an exersaucer and you love it. You can already make some of the toys light up! You are still little miss sunshine. You have a smile for everyone that catches your eye.
Speaking of eyes your blocked tear duct has caused you to have an eye infection and so we are back to glasses for a couple days. You are not a fan of glasses anymore and after having the contacts I'm not either! You are constantly pulling them off and slobbering on them and they also have a giant scratch down the middle. I have no idea how it got there but I'm pretty sure there is a certain 2 year old we both know that could tell me.

We added a new Dr to the list this month. She's a GI Dr. It turns out your liver enzymes have gone down so that's one less thing to worry about! Yay!!
We are also talking about adding a Pulmonologist because with the slightest cold you get you end up wheezing like crazy and sometimes the breathing treatments don't help.
You also have your 4th ear infection right now so you might be headed in the direction of your sisters to get tubes. Hopefully if that's the case it can be scheduled along with your quarterly glaucoma checks so you won't have to go under anesthesia any more than necessary .

For some reason these days have been really difficult . In reality I think they should be feeling easier but I think I'm just worn out from the endlessness of the past few months. I feel like my emotions are right below the surface just waiting for someone to say the wrong thing or even sometimes for someone to say the right thing. I just dissolve in a puddle of tears. I think the crying is helping though. It's gotta come out sometime I guess. Spending every evening relaxing at the pool is definitely helping me rejuvenate. You and your sisters are the best medicine!

Tuesday, May 11, 2010

I am a poster girl with no poster, I am 32 flavors and then some ~ ani


Dear Marley,

Sorry it’s been so long since my last letter. We have been running crazy the last couple weeks. Not that that is much different than normal but I have definitely had less time to be in front of the computer. I can’t believe that we are already half way through May. Pretty soon we will be leaving for Alabama and then shortly after that we will be moving!!! Yay for more space!

Today was a big day for you! We got your contact lenses. Dr. Awesome and her daughter and you and I went to Austin to pick them up. I think the eye guy expected it to be easier than it was. You sure can squeeze your eyes shut tight! It took at least 5 tries to get them in but once we did WOW! It was so obvious that you could finally see. After you finally stopped screaming, you blinked your eyes and started smiling. That was such an amazing feeling for me. With everything you have been able to do without really being able to see clearly I know you are really going to blow everyone away now!

The other big news for you is that you gained over a pound in just 10 days! Apparently the combo of formula and breastfeeding is exactly what you need.

I told your daddy yesterday that I wondered when life would slow down for us and he said “Slow down?! I just hope it doesn’t speed up!”

I love you baby girl…

More soon

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.


Tuesday, March 30, 2010

Some answers

Dear Marley,

This should be the last letter that deals with the past. Next time we will be caught up to all the cute and amazing things you are doing in the present. But for now I figured we should catch your readers up on all the things we've found out about your body ( I won't say about you because you are so much more than your physical body ) .

So after the weekend in Dallas we headed back down to Austin for a followup appointment with your Opthamologist ( Dr. SeeGood) . Once again we had to dilate your eyes and wait a long time except this time your daddy and your two sisters were with us. Your sisters do not love waiting in Dr's offices. They are awesome girls but boy can they be a pain in the butt when they are cooped up.

Anyway after Dr. SeeGood looked in your eyes again she decided that your cataracts had already gotten worse in just a week. At that point she said that we should schedule the surgery for the end of March. I was alot less upset this time and able to ask some informed questions that made me more comfortable with what was going to happen. She also told us that she doesn't implant permanent lenses in infants so we would be putting contacts in your eyes at least until you are 2. With as much as you love eye drops I can totally see how easy that's going to be. ***insert sarcastic eye roll here***

After your eye appointment your daddy had to leave for California again and we were all pretty sad to drop him off at the airport. We headed back to Fredericksburg after that hoping to get back into a normal rhythm.

Unfortunately normal doesn't really seem to happen for us lately. On Wed of that week I got a call from Dr. Smarty's office. They had received some results of blood work back and they needed to do some further testing on you. They wanted us to be in Austin that afternoon. We quickly dropped your sisters off with the Bushes and headed over.

When we got to the office they took us back to a room and handed me a folder of paperwork. While the assistant stepped out to check on something I opened up the folder . In the folder was an article that they had searched out and printed from Google. (If you're wondering how I know this you should just ask your Dad why he calls me Dr. Google).

At the top of the article were the words Rhizomelic Chondrodysplasia Punctata. I had bookmarked this article about 3 weeks before. I had probably read it 100 times already. Looking back I think I had read it so many times because I needed to convince myself that out of the few things your illness might be this was absolutely not one of them.

At this point was where the appointment all went south. I had been under the impression that they wanted to do further testing on you because they still had no idea what was wrong with you. Well as it turned out the lab work that they had received back actually told them what you had and they just wanted to do further testing to confirm it.

So in a not very gentle or kind way Dr. NotsoSmarty informed me that you did indeed have Rhizomelic Chondrodysplasia Punctata (RCDP) . Her idea of helpful information ( besides the packet from google) was to give me information on Opiates and Hospice. Not so helpful really. I don't know if I have ever been so angry as I was leaving her office that day. Who was she to be telling me that you need opiates or hospice. I knew she was absolutely without a doubt 1 billion percent wrong and I was going to prove it .

That night after we got home I got everyone to bed and starting using my google magic. It was at that point that I found . I had seen the site before but had never really looked at it in depth. As I was looking at the site again I happened to see something that said "buy tickets" I clicked on the link and was looking at a ticket for a benefit for RCDP kids that was happening in Strongsville, Ohio. The city that your dad is from! How crazy is that?!?! After I saw that I looked up the family that was organizing the benefit and wrote down their number. I figured who better to hear about this disorder from than someone who is living it.

The next day I called Mindy Cirner. Her two kids Jake and Jordyn both have RCDP. She was amazing to talk to. She gave me hope which was something I felt like Dr. NotsoSmarty had totally tried to take away. She also gave me what so far has been the most important weapon in our arsenal . The direct number to Dr. Nancy Braverman.

Dr. Braverman is an expert on RCDP and she was able to look at your lab work and tell me more or less what we can expect in terms of the severity of your RCDP. She spent a long time talking to me on the phone and also a long time talking to Dr. Awesome. She is an amazing woman and I am so grateful that she is on our team.

So that pretty much brings us up to now. Last week you had your first cataract surgery combined with an MRI. The cataract surgery went great. We pink puffy heart love Dr. SeeGood.

Unfortunately the MRI didn't bring such great news. You appear to have Cervical Stenosis which is a fancy way of saying that your spinal column is really narrow at your neck. There just isn't alot of room in the column for your spinal cord. So far fortunately it doesn't seem to be affecting you at all. You also have a spot in the parietal lobe of your brain where it looks as if you may have had a stroke at some point before you were born. With all of this information though comes a new favorite Dr. He is a neurosurgeon and he said that the physical findings on the MRI do not determine who you will be or how you might be affected. Which of course is something that we already know but it sure is good to hear a brain surgeon confirm it.

As for how you are today. You are quick to smile and blow raspberries for us and you are almost laughing! The pain in your arms and shoulders is so much better. You constantly have your hands in your mouth and have been almost able to pull your eye patch off. You already love your sisters and have such a sweet sweet personality. You love to cuddle and you sleep up to 8 hours at night in your own bed. Neither of your sisters did that this early by the way. In fact most mornings we still wake up to them having snuck into our bed in the middle of the night.

You put a smile on the face of everyone you meet and we are so excited to see what the future will hold for you. I would do anything in my power to take the pain of this illness away from you and I know we have a long road ahead of us but I am so grateful that you are in our lives and I look forward to how all of us are going to be changed for the better because of you.

Cataract surgery number 2 here we come on Thursday.


Saturday, March 27, 2010

Part 2

Dear Marley,

So after that x-ray we decided that to be on the safe side we should probably make an appt with a geneticist and an appt with Scottish Rite Hospital in Dallas.

The appt with the geneticist ( we'll call her Dr.Smarty) was very early in the morning so we decided to stay in a hotel the night before. Your Mamaw decided that she would go with us to help out with your big sisters and it was a good thing she did.

The morning of the appt we all woke up very early in the morning and just as we were getting ready to leave the hotel Rory threw up. I managed to catch most of it and we thought maybe she was just coughing and that made her throw up. Anyway we quickly cleaned up and headed to the hospital.

We got to Dr. Smarty's office and were shown back to a consultation room. It was a pretty comfortable room with a couch and lots of toys. After we had been in there for about 15 minutes though Rory threw up all over the floor. This really wasn't the kind of Dr's office that's okay with puke on their nice rug. Again we quickly cleaned it up and Mamaw and Rory went for a walk.

Next up was meeting Dr. Smarty. She came in and asked your dad and I lots and lots of questions about our family history. Your dad got pretty offended when she told him he looked like a dwarf ( well that's not exactly what she said but it sounded like it to him). She also sent us to the lab and to radiology for even more tests.

I asked her about Conradi syndrome and she quickly said it was way to early to be asking her about anything specific. We wouldn't know anything until we received the bloodwork back. What we didn't know then was that she already had in her head that you had Rhizomelic Chondrodysplasia Punctata (RCDP) and the blood that they were drawing that day would be specifically to test for that. She also was pretty insistent that we make an appt with an eye doctor to get your eyes checked for cataracts. I was really irritated with this because I thought that there was no way that you could have cataracts this early.

We left the appt that day slightly annoyed with Dr. Smarty and the facility in general but still not too concerned with what your final diagnosis might be.

The week after that appt was one of the worst weeks ever sickness wise for us as a family. Your dad had to go to Los Angeles and New York for work and your sisters and I were on our own for 2 weeks. Rory's little puking episode led to Delaney and I both catching whatever she had on top of having sinus infections. It was truly a miserable miserable 2 weeks.

In the middle of this lovely week of sickness I called to make an appt with the eye dr. I made the call at 11am and they wanted to see you at 1pm . Keep in mind the Dr's office is an hour and a half away. It was a pretty frantic morning to say the least. I had to find somewhere for your sisters to go and get you and I ready and out the door in half an hour. I ended up sending Rory with papaw and Delaney came with you and I.

It was crazy but we made it to the appointment on time. After waiting for 30 minutes for your eyes to dilate the Dr. came in, looked at your eyes for a short time and turned to me and told me you had cataracts. I probably could have been knocked over by a feather at that point. I was so unprepared to hear anything of that sort. I just knew she was going to pronounce you totally healthy. I was having a really difficult time holding it together but I didn't want to cry and have Delaney get all worried. She said we would need to do a followup appointment soon to talk about having them removed.

I think that that appointment was the first time I really realized that we were dealing with something that we wouldn't be able to just sweep under the rug and pretend that it didn't exist.

This was something real and something that could potentially effect you for the rest of your life.
Just to put a cap on how sucky that week was I realized I couldn't tell your dad about the cataracts until he got back from los angeles. He was way too stressed out about work and it just didn't seem like something you tell someone over the phone.

The only bright spot in that week was you. I just kept praying that you wouldn't catch anything and thank God you didn't. You just kept eating and sleeping and growing.

Your appt at Scottish Rite in Dallas was on a Monday and we picked your Dad up at the airport on the way. It was touch and go for awhile as to whether he would be able to go or not. In the end though he came through as he always does. I told him about the cataracts as soon as we picked him up and he was upset but said we should wait until the followup appt before we got too worried.

Scottish Rite was kind of a bust in terms of finding anything out about what you might have. There's nothing like sitting in a room full of specialists and having them tell you they have no idea whats wrong. They did have to take what seemed like a million x-rays. Your dad had a really hard time with that. The pain that you have in your arms and legs really intensifies when they have to tug and pull on you to get the right pictures. It really does suck.

So anyway the rest of the week in Dallas got much better. Your cousin Jadyn's adoption finalization was also that week and we got to celebrate by spending the weekend at Great Wolf Lodge with the whole family. Granted, you didn't care much for the water park but your sisters were enthralled which made my life much easier (for the weekend at least).

More next time....

Friday, March 26, 2010

The beginning

Dear Marley,

It's hard to believe that in 2 days you will be 3 months old. The last 3 months have absolutely flown by.

Actually my whole pregnancy with you flew by. I'm sure that was mostly due to the energy that it takes to keep up with your crazy sisters. It seemed like I got a positive pregnancy test and the next week you were already here. We were so worried that you were going to follow in your sisters footsteps and have to go to the NICU and were so relieved when you didn't.

Our first day with you was amazing. We got to keep you in the room with us and it was perfect.
Later on as your nurse was checking your vital signs she thought maybe your reflexes in your right hand and arm weren't so great. Your pediatrician, Dr. Awesome ( your knight in shining armor even though you don't know it yet) decided to order an x-ray of your collar bone to make sure it hadn't been broken during your delivery. This was our first indication that anything could be wrong with you. We got the results back shortly though and it showed that your collar bone was fine. We just figured that it was a soreness that would quickly be gone.
So approx 24 hours after you were born we took you home. You truly have been the perfect baby from day one. You ate, slept and pooped right on schedule. You did have a little bit of jaundice and we had to use a bili blanket for 2 days but other than that we had an excellent first week.

When you were a little over a week old we took you to back to Doctor and had you weighed and measured and checked over. You looked great. You had gained a few ounces and grown about half an inch. Dr Awesome came in and looked in your eyes and ears and we talked about how perfect you looked. The next moments though will be in my mind and heart forever.

Dr. Awesome had picked you up and was cradling you in her arms and she said that the Radiologist had seen something strange on the x-rays. She said he had seen something in your joints that looked like little dots. It was apparently so rare that the only time he had ever seen it previously was when he took his boards. At that point he thought it might be indicative of something called Conradi Hunnerman disease.

Needless to say I was pretty shocked and a little teary. Dr. Awesome took you and I into her office and explained that from what she had been able to find out about Conradi it seemed as though you could have a mild case and that it that might include cataracts and little else. She also thought that it would probably be a good idea for us to go ahead and get a full body x-ray to confirm their suspicions. So off we went for the first of many diagnostic tests you would have to be subjected to.

We got the results back from that x-ray the same day and it indeed confirmed that the stippling was widespread throughout all your joints. While we were waiting for those results I googled Conradi on my phone and what I read was actually comforting. I looked at the rest of the signs of Conradi and thought well you don't have any of those, so this will just be something minor that we might have to list when filling out paperwork. Surely it won't be anything that will effect you on a daily basis or for the rest of your life...

To be continued....