The kids both got haircuts this morning. They did beautifully, but Oliver was not too happy when I was trying to take photos. I will post more when he is awake and happy. I love Wavey's hair short for the spring and Oliver looks so different without his moppy curls (I miss them). Other than that it is VERY cold here in PA!! I hope spring arrives early this year.
Thursday, February 28, 2008
Wednesday, February 27, 2008
Today is a "sick day" for the kids. Waverly woke up sick in the middle of the night and Oliver was up most of the night with a fever. I am hoping that this passes quickly. I hate feeling trapped inside and we have so many things we want to do while we are home. The kids are enjoying their time with family, although they do miss their Daddy.
Monday, February 25, 2008
I just got a call from CHoP. Waverly's MRI is scheduled for March 5th. I love that I only have to wait a little over a week until we can get this test finished. Just another reminder of why I am so thankful we were able to come home and be near such a fantastic hospital. We are enjoying our time in PA visiting family and some favorite sites (ie, Ice Cream World, Target, Salv's, Wegmans, etc). We are excited for Matt to arrive in a about 17 days!!
Friday, February 22, 2008
Thanks to all of you who sent letters, cards and packages to welcome us home. It was incredible to sit down after putting the kids to bed on Monday night and read through all of the words of encouragment you sent. It was a great surprise. Thanks for organizing that for me, Kamarah!!
I took Wavery to CHoP yesterday and it was wonderful. We met with 2 neurologists, one of them them is the chief neurologist at the hospital, and 3 therapists. We spent 2 hours answering questions and examining Waverly. Then they sent us to the lab for further blood work. Unlike in London, all of our results should be back within the next 3 weeks. They are also going to redo the MRI within the next 3 weeks. They do not think she has the characteristics of a leukodystrophy, but they are going to conduct lab work to (hopefully) rule it out. They are basically starting from scratch to determine what is causing all of the problems. The doctors and therapists were all WONDERFUL!!! We are going to go back on March 20 to go over the results and decide what we are going to do next. It feels so good to have a whole team looking at Waverly. They had all reviewed her case file before we got there, Wavey responded well to all of them and she was so well behaved. I am so thankful that we were able to come home and that my parents live so close to such a great hosptial. We didn't come away with any answers, but I finally feel like there are people who are determined to find an answer for us.
Wednesday, February 20, 2008
Tomorrow I take Waverly to Children's Hospital in Philadelphia. I am very excited to get this process started and to eventually get some answers. I will let you all know how it goes. Thanks for your prayers!
Tuesday, February 19, 2008
The kids and I made it back to the US without incident yesterday afternoon. It was a very long travel day, but all in all the kids did a great job. We are having a rough time adjusting to the new time, but hopefully in a few days we will be back on schedule. (The 2am wake up this morning was interesting.) We had breakfast at our favorite little PA diner this morning with my Nana. It was wonderful. Oliver is napping and Waverly is watching Cinderella. I can't believe she is not tired!! Wavey's doctor appointment is on Thursday. We are very excited to meet the doctor and have lunch at Chipotle (her favorite restaurant).
Sunday, February 17, 2008
We are off to PA tomorrow morning. We are very excited to be home with family and friends, but we are going to miss Matt & our home in London. I am incredibly nervous about the flight alone with both kids. I am in need of major prayer that the kids will be well behaved and I can remain patient. Wavey goes to see the specialist on Thursday. I will write more when we are back in the US.
Sunday, February 10, 2008
The weather could not be more beautiful for this time of year. It was in the mid-50s and sunny for the entire weekend. We took a train to Bath yesterday and spent the day exploring the very quaint city. Today, we enjoyed the zoo and Primrose Hill (best views of London). We had a great time together as a family before the kids & I leave for the US in about a week. Waverly was a dream this weekend. She was so well-behaved and happy. Matt and I are both very proud of her. We are so blessed to have her.
Wednesday, February 6, 2008
Let me thank you all for your prayers and messages over the last few days. It has been so encouraging to Matt and I. I fly home with the kids in less than 2 weeks. I am very anxious about the long flight alone with both of them, but I keep reminding myself that I have to stay calm...and I will never see those people on the plane ever again. I am so excited to be back with family and friends. It is going to make a huge difference for me personally. I hope that I can get together with some of you while we are back in the US.
Saturday, February 2, 2008
Here is the latest update on Waverly, for those of you who didn't receive my e-mail: I have been meaning to write this e-mail for a few weeks now, but I just haven't had the energy to do it. I wanted to share some new developments in Waverly's health. We recently received some more blood test results back from our neurologist. These particular tests took 3 months to come back to us. One that captured our attention was a white enzyme called galactocerebrosidase. Waverly's was very low and the lab suggested we have the test re-run to verify that it was an accurate result. When we looked into that particular enzyme and her abnormal MRI with some of our doctors, we discovered that it is linked with some serious neuro-muscular diseases in the dystrophy family that can be fatal. Since then we have been frantically trying to figure out the best course of action to take. Everyone we have spoken to has encouraged us to take Waverly to a Children's Hospital in the US for further testing and diagnosis. We contacted CHoP (Children's Hospital of Philadelphia) and I am working on getting an appointment, but the earliest I can get, thus far, is the end of March. The pediatric neurologist they want us to see specializes in this particular area. We took Waverly to a lab here in London yesterday for all of the blood tests to be done again. A big frustration is no one at the lab can tell us how long until we receive the results. I cannot understand why this is such a difficult question, but no one is familiar with this particular enzyme and it isn't in any of their books. I am hounding them for a answer - I need to know how long I am going to have to sit here and wait and worry. We already had planned in be in PA the second half of March for a visit and doctor visits. We will most likely be extending our time in the US to visit and work with the doctors at CHoP. I am hoping to get our appointment moved up, in which case the kids and I will fly home sooner. All this to say that we are incredibly stressed and worried about the outcome. This has been a very long process already and the wait is unbearable. I am writing this e-mail to all of you to let you know about what we are dealing with and to ask for your prayers. This is such a difficult situation to deal with, especially when we are so far away from all of you. We also have to factor Oliver's health into all of this. He is scheduled for an MRI on 14/2. We are praying that his MRI is normal. We are still waiting for the lab to let us know how long of a wait we have before us. I am really hoping it is not 3 months, like the last time. The embassy medical unit is working to try to get this answer for us as well. They understand how anxious we are and how potentially serious this is for us. Waverly started attending a nursery school every morning. She loves going and being with the other kids. She is still making gains developmentally speaking in a some areas, but in many she has plateaued and doesn't seem to be progressing. She has such a sweet, sweet spirit. Please feel free to forward this e-mail on to other people who may know Matt and I. We could use all of the support we can get at this point. Matt and I feel fairly helpless at the moment. We are angry that this is happening to our little girl - it just doesn't seem fair to her
Many of you know our situation with Waverly's health. We just found out that we are able to see a doctor who specializes in her specific issues at the end of the month. So, the kids and I will be flying back to the US in a few weeks. It is going to be difficult to be away from Matt for a few weeks, but ultimately it is the best thing for our family. Thanks for your thoughts and prayers.