Thursday, January 29, 2009

And it's off...


Today was what we call our "crazy busy day" as we have multiple actives that we love to do on Thursdays. We were, however, given a small break from the craziness this morning in the form of the kids had a two hour delay because of the weather. It was only a small break though, as I had a scheduled appointment for Lucy to see the orthopedic surgeon at 9:30AM. So what could have been a very relaxing morning turned out to be a slightly chaotic one as I was making arrangements to get kids to school on time and all of us out the door at the same time. No matter how I plan things getting everyone out the door at a set time is darn near an Olympic feat! It doesn't help that I never want to wake up in the morning. I try to eek out every last minute of sleep that I possibly can before I attempt mission impossible; getting four kids and myself dressed, fed, and ready to walk out the door in the shortest amount of time. I am so thankful for my husband who very gently, in fear that I may roll over and swing at him like one would do to the snooze button on an alarm clock, wakes me every morning giving me the necessary ten or so minutes before I really need to wake up. I secretly admire morning people, but balk at those who can not stay up past ten o'clock. Sorry if I offended any of you, I think I may have also complimented you if you are truly a morning person. If you are neither than you must be well rested. Anyway, I dropped 3/4 of our children off at Beth's house and headed off to Lucy's appointment. They removed her cast which reveled a very short and lean leg! They did not redo any x-rays because the type of break Lucy had was difficult to assess on her first films. The best way to know whether or not she is healed is to observe her mobility and assess her pain level. She has not been back to her normal since having her cast removed but I was told that it could be days before she regains the confidence to do things without her cast. I think that by tomorrow she will be up but not quite running :).

Wednesday, January 28, 2009

E-mail subscription is here!


OK all you All the Marletts Readers, you can now finally subscribe to our blog to receive e-mail notification when we have written a new post! See the upper right hand corner of our blog to type in your e-mail address and follow the instructions. I know you are all jumping with excitement at the thought of getting a message in your in box that says we have a new post available for your reading/viewing pleasure. This blogging stuff has become an obsession of mine as I feel like I am mastering the art of blogging, if there is such a thing. Now if I could only figure out Facebook, I could then spend all of my day reading and writing about our lives.

Monday, January 26, 2009

Just another day...




We have managed to keep the stomach bugs away! Jack was the only one who really fought that battle. All of the rest of us felt some relief in knowing that we avoided that one. We are more conscious of germs than ever before! In fact, germ fighting has become such a fact of life that even our kids are telling their friends to wash their hands for as long as it takes them to sing the ABC's "normally". Lucy has had a fever off and on since Saturday, she seems to get these low grade fevers every now and then for no apparent reason, although I'm sure there is a reason we just don't know what it could be. We would like to pass it off as being related to teething, but with no teeth in sight it's hard to say that. With Lucy you never know, we will of course continue to monitor her. Since cutting way back on the solids, she has not had the fussy nights and constant dirty diapers. We keep a journal of everything from Lucy's AM and Pm weight, to how many diapers we have changed a day, to her daily temperature, to how often and how much she has eaten in order to observe, really, anything. Drew has been plotting her growth on his computer and last night we noticed a trend in her weight that confirms what we have observed. Her weight declined the few weeks that we were consistently feeding her solids. We are waiting to get results back from some of her metabolic labs before G.I. moves forward with any procedures they/we feel are necessary. All procedures done on Lucy are complicated because of her inability to fast, we need to be admitted to the hospital for several days in order for her to undergo anything that requires fasting. Our goal right now is to keep her gaining and to keep her out of the hospital, especially this time of year! The only solid food that she is currently eating are Cheerios, I think that she would go through withdrawal symptoms if she were not allowed to eat them. As Lucy is getting older she is becoming increasingly aware of the world around her, especially to what we are eating. She is definitely interested in food, so we are hoping that we will be able to try to feed her solids again soon. Getting her to gain and keep on the weight is our current goal.
So many of you have asked about Lucy's leg. On Friday she began standing again! To us, this is a sign that it is healing as she is bearing weight on it once again. She does not seem to be bothered by the cast, she manages to crawl and get around well. Drew jokes and says she double clutches with her right leg to make up for her left. She is so small that her cast fits in the leg of all of her sleepers, so dressing her has not really posed a problem. Bath time has been the biggest challenge as she would love to kick and splash around in the tub with her brother and sisters. On Thursday we go back to DuPont where they will hopefully be able to remove her cast. I'll let you know :).

P.S. The above photos are just a few of my recent favorites. If you notice in one of the above photos Lucy has no yellow tube taped to her face, that is because she has a new hobby of tube pulling while riding in the car. There's never a dull moment in our lives!

Tuesday, January 20, 2009

A Snowy Day





We unexpectedly received several inches of snow on Monday which made our kids oh so very excited! I have to say that I too was loving the landscape yesterday as we felt like we were inside a snow globe. I'm a winter girl at heart when standing in the warmth and comfort of my house looking out, but I don't really love being freezing cold. When you have lived away from the very frigid temperatures of the Midwest your brain quickly thaws and reprograms your internal thermostat to adjust to warmer weather. That being said, I was freezing cold standing outside readjusting hats and mittens and brushing snow off of very rosy cheeks, but that didn't stop us from enjoying the snow.

Sunday, January 18, 2009

How much sleep is too little?

It's Sunday night and we have had a rather sleepless weekend. We are currently at war with a stomach bug. Jack woke up in the middle of the night saying that his body felt "shaky", this is code for look out I'm about to throw up all over you and everything in my way. Drew and I were so out of it that by the time we realized what "shaky" meant we were seconds too late to defend ourselves. We then spent the next few hours attending to Jack, carpet cleaning, attending to Megan who woke and had a stomach ache but did not have to throw up, attending to Lucy who woke as usual and needed to be fed and diapered, and adding the next feeding to Lucy's pump. Two hours later we went back to sleep only to have Sophie wake twice after that to ask to be tucked in again and have her snow globe turned on. Lucy then woke at 5:50 because she was all twisted in her tubes and again needed to be nursed back to sleep. After going back to sleep at a little after six, I woke to Sophie standing over me a 7:20am gleefully telling me that it had snowed outside and that she could see it because it was now light out which in her world means it is obviously time to wake up! I'm so tired typing this tonight. I did however manage to stick to my word today, despite my very valid "I'm so tired excuse", I started back at the YMCA where the elliptical machine kicked my butt! Despite my fatigue, my batteries got recharged as I was sweating off my stress. I think that I am sitting here typing this post tonight instead of sleeping because I am too sore to stand up and walk my very sore a** all the way upstairs. I will make this short as I am legitimately tired. The first stomach bug war of 2009 has officially been declared, we are Lysoling away and trying to keep the kids from touching or breathing on the baby. Well just have to see how that works for us.

Friday, January 16, 2009

Another Friday


Yeah, we made it to another Friday! This week seemed to fly by, despite all that we had to do. Lucy's leg is doing better, she does not appear to be in pain anymore. I think that the weight of the cast is what is bothering her the most, it is heavy weighing in at approximately 11 ounces. When you weigh almost thirteen pounds, eleven ounces is a significant weight to have on just one leg. I took her back to DuPont on Thursday morning where the consensus was that she needs to wear the cast another two weeks. In two weeks we will hopefully be able to remove the cast and evaluate her mobility and her pain level to see if she is completely healed. Baby bones are mostly cartilage; therefore, we were told that they heal fairly quickly. We did learn that Lucy has a condition called osteopenia, thinning of the bones, which is most likely related to her metabolic condition. This makes sense when you consider that her body is not metabolizing the way most of us do.
On Wednesday we went to CHOP and had an appointment with her GI doctor as well as her nutritionist. As far as appointments go, it was pretty uneventful. We discussed Lucy's newest digestive issue, pooping all night long after eating any solid foods. We are concerned that she is having issues digesting/absorbing solids as she appears to be uncomfortable several hours after she eats. We are waiting to do any GI procedures until we receive back some of her metabolic labs. We should know more in about a month. In the meantime, we are going to continue with the feeding regiment that we have established, and cut back on the solids. Lucy is gaining on her tube feeds and everyone is encouraged by her progress. Although we are encouraged with her weight gain, we have realized that Lucy is going to be receiving entral feeding a lot longer than we originally thought. Drew and I had in our minds that it was going to be 2 to 3 months of this at the longest. However, when we began the process we didn't know as much as we know today. We have had to adjust our expectations and take it one day at a time. This is so much easier said than done, especially when you are a planner like I am. As for now, there is no end in sight. All of this may sound routine as I type it, but know that it has been so difficult to get used to this "new normal". We are no longer going into appointments explaining our situation, instead we are discussing Lucy's medical condition as a fact of life. This "fact of life" brought me to tears when we were discussing her feeding regimen with her nutritionist. I never thought in my life that I would be discussing the issues that we have had to discuss recently. We love Lucy's nutritionist as she is very practical and understanding. She applauds our efforts to give Lucy as much breast milk as possible, and praises us for our dedication. I think that my emotions got the best of me when I was speaking to her because she could understand what I was feeling. As you can imagine, it is hard to find others who can relate to what we have been feeling. Everyone around us has been compassionate, but unable to truly know what it feels like to be going through what we have been dealing with. It helps us when someone can say, "I know how you are feeling".

We will continue to adjusting to our situation as need be. We are always hopeful and grateful for the opportunities that life has given us. We live knowing that we have been given the gift of raising our beautiful family no matter what the circumstance. What an awesome responsibility!

Monday, January 12, 2009

In Recovery



After a much needed weekend, we are all recovering from last weeks experiences. Lucy is doing remarkably well for having a heavy cast on her entire left leg. She is still able to crawl around, though not nearly as fast, but is unable to stand which is only mildly frustrating to her. Again, she amazes us with her strength and determination. Don't ever underestimate her, she may be tiny but she is mighty! I will take her in, hopefully later this week, to have a repeat x-ray of her leg done to see how it is healing.

On Sunday, by some miracle, I was able to take Jack and Megan along with two of their friends to see the movie The Tale of Despereaux. This was a celebration for Jack's eight birthday. When I say miracle, I mean that I was able to put Lucy down for a nap seconds before we had to leave for the movie and she stayed sleeping for over three hours . An even bigger miracle occurred when I was able to convince Sophie that not coming to the movies was better because she could have a special Sophie/Daddy afternoon. I also threw in there something about taking her to Dairy Queen all by herself, and maybe also something about being able to pick out any movie she wants to watch from the video store without having to take a vote with her other siblings about who wants to watch what movie. That's what I mean when I say miracle. For those of you who know Sophie, you know that she's VERY difficult to persuade! All little girls love princesses, but a Diary Queen what could be better than that? I will hold true to my promise sometime this week, of course it just happens to be the coldest week of the season.

Back to my afternoon with the "big kids". We affectionately call Jack and Megan the "big kids" and Sophie and Lucy the "little kids", it works for all intense purposes. I haven't gone out without a baby in my arms in months, in fact I am hard pressed to recall a time. I had such a great time listening to the kids conversations on the way to the movie. It was like they couldn't get their thoughts out fast enough. As for the movie, we loved it. One of the things I love to do with my kids is to read books. The Tale of Despereaux is a children's novel that received a Newberry award. We started to read the book on Christmas but haven't quite finished it yet. We know from past experience, that the book and the movie are almost never the same, so we were OK with going to see the movie before finishing the book. After seeing the movie I took them to McDonald's where we sat and talked with their friends about the movie for over an hour. I was impressed with their critiques of the film, but again Jack and I agreed that the book was way better than the movie! Yeah, another win for reading! I had a great afternoon with the big kids and hope to do it again soon.

Drew and Sophie had a nice quiet afternoon. When I asked Drew what they did he told me that they played Wii and watched the new Tinkerbell movie. I was impressed that he watched Tinkerbell and even told him so when Sophie chimed in and said, Daddy played Jack's DS on the couch while I watched Tinkerbell. Oh, kids can keep you honest, right babe! Sophie did take a nap so Drew had some much deserved quiet time at home watching football. Too bad the Packers or his beloved Brett aren't in the playoffs.

This week we now have two appointments, one with Lucy's GI doctor at CHOP and of course now an appointment with orthopedics. I'll keep you posted on anything new. I am happy that it is Monday, that Lucy is doing better, that Jack and Megan are in school, that Sophie and Lucy are napping, and that Drew is back home. It's the little things...

Saturday, January 10, 2009

About Last Night...

I am going to start this post by saying how blessed we are to have the friends we have in our life! Yesterday I posted about how tired I have been, that Drew has been out of town all week, that I went to DuPont twice last week, and that I think that I deserved some sort of badge of honor for surviving a week without my husband. I now need to forfeit my badge of honor as I no longer qualify for this award. Last night after receiving a call from Drew that his plane was going to be delayed another forty or fifty minutes I wanted to throw a major toddler temper tantrum! Knowing that I shouldn't do this to my husband over the phone while half of flight US Air 3344 could hear me, I hung up with him and called my sister instead. This delay meant the difference between getting home in time to put the kids to bed late or getting home too late to put the kids to bed late. I was on the phone talking with my sister about this while also in the process of heating up dinner for the kids, changing yet another blow out diaper of Lucy's, and wiping up the side of the cabinet that Sophie decided to use as a napkin, when a terrible thing happened!!!! Lucy was in her high chair eating a fist full of Cheerios when she stood up and fell onto the floor. Oh my nerves are still shaking as I write this. I didn't actually see her fall as I had my back turned to her while I was throwing away her dirty diaper. Of course she screamed, I screamed, and all the kids screamed. As for my sister, I didn't really hear her scream because I dropped the phone so quickly and ran to my baby, but I'm sure she did. I immediately swooped Lucy up and began to comfort her while feeling her head for any major bumps or bruises. Lucy nestled into my chest as she wanted to nurse for comfort. She calmed down rather quickly while nursing and I was able to look her over for any obvious signs of injury. She appeared fine until I tried to put her down on the floor. She began to scream and I noticed that she wouldn't bear any weight on her left leg. Oh my gosh, I knew something wasn't right! I called our dear friends Raquel and Doug. Doug happened to be the perfect person to ask about our current predicament as he is an orthopedic surgeon. After trying to calm my nervous, he said that he was going to make some calls to DuPont hospital and to a friend who is a pediatric orthopedic surgeon. He offered to go with me to DuPont to take a look at her leg. Oh yes you read correctly, back to DuPont again! After quickly mobilizing the kids, convincing Sophie to put on clothes and shoes, and grabbing three pieces of cold pizza for a dinner in the car, off we went. I dropped the kids off to be with Raquel as Doug and I headed to DuPont. Drew, in the meantime, had no idea what had just happened as he was in flight and his cell phone was turned off. I made some calls to friends to let them know what had just happened and where I was going to be just in case Drew couldn't get a hold of me. This is a warning to all of you who are reading this and don't really know us yet, I think that I would think twice before becoming friends with us, as I truly feel that a friendship with us could be detrimental to ones cardiac health! Just ask my sister, although she is family and doesn't have any choice. All of our friends I spoke with were so supportive as always and in awe of what had just happened, prayers and well wishes were said and greatly appreciated! Once at DuPont, I got up the nerve to ask Doug about worst case scenario. He told me that if she had a broken hip then she would need a Spica cast, you know a cast around the entire lower portion of ones body. Whoa, I quickly changed the question to best case scenario, which he said would be just a bruise and that it would heal in its own time. Because of Doug's connections we were seen right away by the ER doctors and the orthopedic resident on call. When the ER doctor saw us she recognized us from a previous ER visit we had with Lucy this past year. In my mind, I knew that it probably doesn't look good as a parent when you are recognized by the ER doctor. Right away Lucy was sent to radiology where they took two images of her leg. I could tell that she was indeed in pain and that this probably wasn't just a bruise. The orthopedic resident and Doug took a look at her films and concluded that she indeed had a broken leg, her left tibia to be exact. Poor Lucy, she has been through so much in her young life, and now a broken left tibia. My heart aches for her! I guess now we need to add orthopedic to our list of specialists. Oh, what next!!! Drew arrived at the ER just as they began casting her leg. He was a sight for sore eyes! Of course the first thing he asked the doctor was why weren't they using a Gore-Tex cast liner. F.Y.I. apparently a Gore-Tex cast liner was not appropriate to use in the casting situation that Lucy needed. Lucy's leg was cast from her toes all the way up to her hip. This definitely adds some extra weight to her. When all was said and done, we were in and out of the ER in record time. I know you read this Doug and Raquel, thank you for everything! As for Drew and I, I think that he will think twice before leaving me alone again for any extended periods of time.

Friday, January 9, 2009

What's Happening

Hi everybody! It's been a while since I posted anything about what's been going on in the Marlett household. I have been either too busy to post or too tired to stay awake to write a post. Time is precious, I find myself weighing everything I do with the need for more sleep. I am always wondering whether to do this or that or go and take a nap. If on a rare occasion, and I mean rare occasion, that I have all kids napping at the same time in the afternoon my brain goes into overdrive. You would think that I would run to my bed when I have the chance to nap, sometimes I do and sometimes I just want to steal a moment in the day to sit down and think! I crave those moments in my day where I have time to actually complete a thought without being interrupted by kid stuff, laundry, phone calls....even if it is only five minutes. Even as I type I am fielding questions from the right and left, doing loads of laundry, building a Brio train, and answering the phone when it rings. Don't take this the wrong way, I love my life and all that goes with it, but this Mama is in need of a looooonnnnng nap! I desire to wake up from sleeping when my body tells me to, not when the alarm buzzes or I hear the baby crying. Maybe this weekend I can catch up on some much needed zzz's, or maybe I am being a little unrealistic with my napping desire because I am so tired today! Drew has been out of town on a business trip all week. Ah ha you say, this explains the beginning tirade in this post! If there is some sort of parenting badge of honor for surviving a week without your husband and taking care of four small children, one of which requires extra medial attention, then I think that I deserve such an honor. This week has been a personal triumph. I sound a little dramatic I know, but keep in mind that I am very sleep deprived so every little thing is magnified times something!
Many people have been asking about Lucy and how things are going. Last week we saw the pulmonologist at DuPont, I think I mentioned that in a previous post. We need to rule out any possible chance that Lucy has Cystic Fibrosis. After speaking with the doctor about Lucy's medical history, she concluded that we needed to explore further genetic testing on Lucy to see if she has any of the 1500 or so gene mutations for CF. There is really only one lab in the Untied States that does this testing. The test basically takes Lucy's DNA and compares it with all known CF gene mutations. This is a time consuming process; therefore, the results won't be know for several months. Again we hurry up and wait, we have so many things we are waiting to hear results back from I need to write them down so I don't forget. In the meantime, we have repeated the CF sweat test to see if the results have changed from July/August, we are repeating a stool elastase which looks to see if she is having any malabsorbtion issues now, and she had a new test done which is looking at her imunogloubulin levels. This week I went to DuPont twice, once to repeat her CF sweat test and a second time to drop off a "specimen". Next week we will go back to see her GI doctor at CHOP. Drew and I have a list of questions that we want to ask the doctor, we are hoping that this appointment will be a little more productive than our first. So it looks like we are continuing or streak of doctors appointments.
OK, it's late and I don't have the energy to post our most recent event. Look for an update tomorrow as you won't believe what happened tonight!

Tuesday, January 6, 2009

We're Still Here

I was speaking with my sister yesterday when she mentioned that I haven't posted anything in a while. I know, I know, I could tell you all the things that we have been up to but I'll spare you the details tonight as I am just writing to tell you that we are still here. The kids are all doing well including Lucy. Somebody please knock on something as I fear I have just jinxed us. We are trying to get back on schedule after a much needed holiday vacation at home. Thanks for all the support, prayers, thoughts, and concerns you have given to our family! We can really feel the love! Here's to a new year and many more posts!