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November 7, 2008

Here’s anonther update on our little Lucy…

On Tuesday, November 4th, Election Day, we took Lucy see the metabolic specialist at Children’s Hospital of Philadelphia (CHOP). Drew and I were really hoping that we would get some answers to some of Lucy’s health problems. As many of you know Lucy was diagnosed with failure to thrive (FTT) at around ten weeks of age. She has essentially not gained any weight since she was eight weeks old. Her weight fluctuates between ten and eleven pounds. It all depends on when she last ate or how long it has been since her last bowel movement. The diagnosis of FTT is not a disease in itself, but rather a symptom of a much bigger problem. Because Lucy has so successfully demonstrated the ability to not grow, she has now been given the title of severe failure to thrive. As parents, it is such a horrible way to hear your child described, but even worse when you add the word severe in front of it. Lucy has numerous other symptoms that are concerning to us, as well as her doctors. When we spoke with the specialists on Tuesday they seemed very concerned about Lucy’s growth patterns, feeding problems, low tone, irregular bowel movements, seizure like episodes, and some of her lab work. However, they did not feel that Lucy has an obvious metabolic disease. They gave us several reasons why they felt it was not metabolic. Lucy’s birth weight, 8lbs. 10oz., automatically disqualifies her for many metabolic diseases. Lucy’s cognitive and physical development does not fit the profile of a child with a metabolic disease. She is slightly delayed in her physical development; however that can be explained by her FTT diagnosis. Cognitively Lucy is right on track for a baby of her age, almost eight months old. She is progressing in her development and showing no signs of regression. Lastly, Lucy’s head circumference has continued to grow at a normal rate. Because of this, other metabolic diseases can be ruled out. Of course we were thrilled to hear that they did not feel she has an obvious metabolic disease, however, we feel that if it is not metabolic than what could it be? They ordered more metabolic lab work that apparently Lucy has not had yet. We can’t believe that there could possibly be labs that Lucy has not already had. Of course it will be several weeks before we get the results back from those labs. Again our patience is coming back to haunt us! So where to next, we are going to start “filling in the holes” a phrase our pediatrician used. The consensus is that Lucy needs to be seen by a G.I. specialist, an endocrinologist, cardiology, ophthalmology, and nutrition, and follow up with neurology, and metabolic. Yikes, did you count all that? All told it comes to seven specialists! Our number one priority is to see the G.I. doctor ASAP. This is where we feel all of your thoughts, prayers, and wishes for luck have come into play. By some miracle of scheduling, we are able to get in with the G.I. doctor at DuPont tomorrow! We have been told in the past that it could take four to six months to get in, and we got in tomorrow! This appointment is so important to us because we need to find out if Lucy’s growth problems are related to her G.I. system. We mentioned before that Lucy is going to need a nasal gastric tube (NG tube) put in so that we can add additional calories to her diet. We have been waiting to do this until we got an appointment with G.I. They will be the ones placing the tube. We will then see the nutritionist next Tuesday to discuss what we can do for Lucy nutritionally. Yesterday, Lucy had an appointment with cardiology, and we are happy to report that her heart is healthy. The reason they wanted to look at her heart was because babies with cardiac issues often have feeding difficulties and growth issues similar to Lucy’s, but the main difference is cardiac babies act hungry where as Lucy does not. Lucy also had a follow up appointment on Monday with neurology. They were hoping, as well, that the metabolic team would have some more insight. So that’s four specialists out of seven that we will see or have seen this week. Central scheduling at CHOP is working at arranging several more appointments for us. We will update you when we know more about these.
It has been a roller coaster week for us, full of ups and downs. We are grateful to all who have helped us by praying, thinking, wishing us well, watching the other three children, and just supporting us with your kind words of encouragement. It’s the little things in our life that matter the most and we are so appreciative for them! Please continue to keep us in your thoughts and prayers as we continue on. It has been especially difficult for Lucy, not only has she undergone so many tests and examinations, but she is cognitively aware of the hospital environment and all that goes with it! She may be small and adorable, but watch out she has a large and terrifying cry. We know that what lies ahead is not going to be easy for her.
We hope that our new family blog is a good way of keeping you informed of our current family situations. Our hope is that we will blog about less concerning matters in the future. Bear with us as we are new to the blogging community. We’ll figure this blogging stuff out probably before they figure out what’s going on with Lucy.

All the Marletts
Nicole, Drew, Jack, Megan, Sophie, and Lucy too
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The Koehns said...

YOu are continuously in our thoughts and we wish you the best as you struggle with this. You know we think that you are the coolest family and you will always have our support. Thank you for the blog.

Marlett/Jacobsen said...

We have been thinking about Lucy and you all alot and hoping that there are some answers in your future. It was great to see a new picture of Lucy and her sweet smile. Thanks for keeping us all in the loop.

Dianne said...

What a beautiful picture! This blog is a great idea to keep all of us informed about little Lucy. It must be so hard as parents not to have answers to help your precious baby. Please know that many, many people are praying for her and your family. Stay strong.