Really quick message from the hotel computer....we are having a very beneficial week here at Duke. It is incredible to be in front of doctors who have seen multiple cases of Sanfilippo. Their knowledge base is wonderful! We still have 2 more days ahead of us and no decisions have been made. We really need your prayers. I know that there is no right or wrong decision here, just what is best for our family. But we feel the weight of the world on us right now.
Wednesday, April 30, 2008
Sunday, April 27, 2008
We are off to Duke this morning. We are entering into a whole new phase and I think reality is really going to hit us when we step into the hospital tomorrow morning. We have a week of pre-transplant evaluations on both kids. At the end of the week, Matt and I are hoping to make a decision on whether or not we are going to pursue the transplant option. Please pray for a "gut feeling" and that both of us are in agreement. This is going to be an incredibly tough decision for us, but we know that there is no right or wrong. We don't have a laptop, so hopefully our hotel will have a business center. I will try to update the blog and let you know how things are going and what we have decided. Pray for Waverly and Oliver. This is going to be an extremely difficult week for them.
Friday, April 25, 2008
We arrived back in the US safely last night. The kids both did a great job on the plane and slept fairly well last night. We have a lot of errands to run this morning in preparation for our trip to Duke in a few days. Just wanted to let everyone know that we are back.
Wednesday, April 23, 2008
We are heading back to the US tomorrow. I am nervous. I know that reality will truly set in when we arrive at Duke. Today has been very busy saying goodbye to friends, running errands and packing. It is difficult to pack for the unknown. Next week we should have a plan in place. I look forward to finding out what that plan will be. Thanks for taking this journey with us.
Tuesday, April 22, 2008
The weather is absolutely lovely today. The sun is finally shining and it is warm (in London terms). The sunshine just made me feel better. Waverly started back up at nursery school this morning. She was so excited to be back with her friends and teachers. Oliver and I spent the morning at one of our favorite parks with some friends. They put together the nicest scrapbook for the kids. It has photos, drawings, stickers, notes, etc. It was such a thoughtful gift and Waverly LOVES it. (Thanks, girls!!) Oliver discovered a love for cars at the park and I bought him his first little matchbox type car. He loves it and carried it around most of the afternoon. I just feel like some of the dark clouds are lifting. Nothing has changed, but I am still the mommy of 2 amazing kids. I want to make their time on this earth as special and magical as possible. I need to be positive for their sakes, not neglecting the need to mourn and be real with my emotions. I am considering just moving the family to Disney World. It is Waverly's favorite place on earth and I have always said that I think she would love to live in the 100 Acre Woods with Pooh & the gang. If only Disney needed a diplomat....
Monday, April 21, 2008
Today was a rough day. We have found that our sadness changes and is redefined every few moments. Tonight, Matt and I were reminded that we have to be able to vent our frustrations and not bottle them up. (We were reminded of that fact, because I lost it at dinner.) We were sad for the kids today. We have thought so much about the impact Sanfilippo has had on us, that we forget about what it has done to the kids. There is nothing that is going to make this worth it. We cannot envision an "ultimate purpose" for all of this pain. But, we do pray for some redemption...some glimpses that good can come out of something so tragic. We have been greatly encouraged by those of you who have called or written. Your words mean so much to us. Do not worry about eloquence. I don't when I write on here. We are amazed by the number of people looking at our blog. For as much as I hate the disease, I love knowing that people all over the world are learning about MPS III Sanfilippo. The more people who know and can put a face to the disease, the faster we can push researchers to find a cure.
Sunday, April 20, 2008
Friday, April 18, 2008
Last night, a few hours after we received the awful news, we packed the kids up in the stroller and took a very long walk through Regent's Park. It is probably our favorite place in London. We always seem to end up there when we are thinking. Matt and I are both overcome with so many emotions that it is difficult to even attempt to explain how we are feeling. We are mourning and weeping, angry and screaming, stunned and numb. We have entered a place where not many people have been. It is isolating and lonely. I think that I have lost my ability to ever feel joyful again. Even in the midst of laughter and happiness, I am all too aware that my kids are facing such a tough road ahead and they going to die much too young.
Thursday, April 17, 2008
Wednesday, April 16, 2008
I can see that many of you are checking the blog for an update. We are STILL waiting on Oliver's results. The waiting is getting more and more difficult to endure. They should be in any day now and I am finding myself wanting to just sit home with the phone in hand. Pray for a miracle.
Saturday, April 12, 2008
Friday, April 11, 2008
I have been away from the blog this week. We have been trying to enjoy the semi-spring weather and adjusting to being back home. Waverly was back with her therapists - she missed them and has been doing a great job. We have spent every day outside at a local park. We have been back together with our London friends, which has been great. (Thanks, girls!) The parks are my favorite thing living in London. Both kids really love being outside and strolling around the city. (I missed my double stroller and walking while I was back in the US.) Oliver has fallen in love with sand and swings. No word yet on Oliver's test results. We hope to get good news next week. I have to say that while the blog has served me well in terms of keeping everyone up to date on our family, it has alienated me a bit. I have found that I have had less contact with all of you, because you are keeping up with our news via the web. All that to say, I still need to hear from my friends. I miss you all.
Monday, April 7, 2008
Things feel surprisingly normal. Oliver slept all night - I think he is back on GMT already. Waverly and I were up for a few hours during the night, but slept in. Matt was up early for work. Waverly had group therapy today. She was so excited to be back and see her little friend, Sophie. Oliver and I walked about and ran a few errands. It has actually been quite a nice day. In some ways, coming home is a way to forget everything that has happened these past few weeks. It felt like we were able to leave the pain from her diagnosis behind in the US. But this morning, reality set in again. I am answering questions, describing MPS III, and wondering what is in store for our family after our time at Duke. I am also anxiously awaiting a phone call from the doctor with Oliver's results. We just want to enjoy our 3 weeks in London. This may turn out to be our last days here in the UK. We want to really enjoy it!
Sunday, April 6, 2008
We're home!! We arrived in London very early this morning. The kids did a beautiful job on the plane. They both had dinner and looked at books for a bit, and then spent the rest of the time sleeping. We all just woke up from a 5 hour nap....maybe not such a great idea, but we were all in dire need of sleep. We will see what tonight holds for us. It was snowing when we landed. We haven't had any snow here all winter! But it was snowing big, beautiful flakes this morning. The trees were covered, although it wasn't sticking to the ground. I meant to take a picture, but by the time I woke up, the snow had melted. Oh well. It feels better than I imagined it would to be back home. We were all overcome with the sense of being home. Oliver and Waverly went right to all of their toys and played for a few hours. Matt walked down to Tesco for a few necessary grocery items. I just wandered around our flat...I forgot what it really looked like. It feels so good to be home.
Friday, April 4, 2008
It is hard to figure out where home is anymore. PA has felt so comfortable and safe for me, but I am finally ready to go home to London. Last week, when we were trying to decide what to do, I just couldn't leave. I knew that I was not emotionally ready to get on a plane. But, a week has passed and we've received good news from our insurance company. It feels good to have a plan. I like knowing that we will be back in less than 3 weeks to continue our journey at Duke. I am excited to get back to London. I love our city!! I miss our flat, our friends, our favorite places. I miss public transportation and being able to walk everywhere. I miss a mocha from Paul. Now we just have to get through the next few weeks waiting on Oliver's test results. I am trying to remain positive, but it is so difficult. I truly feel like I will not withstand bad news.
Thursday, April 3, 2008
I think that we have a tentative plan in place. We are going to fly back to London on Saturday. Matt can get back to work for a few weeks, Waverly can get back in therapy, and we can enjoy the beautiful city we call home. We are going to be back in the US at the end of the month and spend April 28th thru May 2 at Duke. We will have Oliver's results by then. If he does have Sanfilippo, they have arranged to have him tested at the same time. At the end of our Duke visit, Matt and I can make a decision about the transplant and about the choice of returning to London or moving back to DC. We were not ready to return to the UK last weekend, but we feel good about getting back there now. We have a plan and a way to get our little girl the medical help she needs. It feels GREAT!!! God has been answering our prayers consistently these past few weeks. It has been amazing to experience. Thanks to all of you for beginning this journey with us.
We just got word from our current insurance company that they have approved coverage for a transplant at Duke. I have a call in to Duke to arrange the first week of evaluations. We are not sure exactly what our schedule will look like, but as soon as we have some plans I will let everyone know. We are thrilled!!
Wednesday, April 2, 2008
We spoke with a contact on the appeals board for our current insurance. They are going to make a final decision by Friday, they hope. They asked for the government's personnel management office's opinion on the matter. I am hoping they are advocating FOR us. If they come back with a "no", we will begin the process of curtailing from our post in London and relocating to DC. This will allow us to switch insurance plans to the one that will cover transplants for MPS. It feels so good to know that we can get to Duke, with the help of insurance. Now it is just which and when. Waverly is doing really well. She has been saying a few new words within the past few days, which is always exciting for us. The warmer weather has been a God sent, because she loves to be outside. It burns off energy and creates a calmer little girl when we are inside. Oliver is also doing well. He is getting closer to walking - every day he is more steady on his feet. He is such a happy little boy! Matt and I are doing well, all things considering. Having a way to get Waverly to Duke has made a dramatic impact on our overall spirits. Now, to work on getting Oliver's results back and getting to NC as soon as possible. Those are our next steps.
Tuesday, April 1, 2008
We think we may have found a work around to our insurance issue. There is another plan we can switch to, upon a transfer back to the US, that WILL cover transplants for MPS Type III. It is written out as plain as day in their specs. We have spoken with a few people at State that have confirmed this for us. We will work out details tomorrow when folks at back to work in London. This is great news for us though!! We may be able to be at Duke by the end of the month!!
Yesterday went by without a peep from anyone we are so desperately waiting to hear. The waiting is incredibly difficult. We feel like we are wasting so much precious time. We are praying that the insurance company calls today with good news - that Waverly's time at Duke will be covered. If that happens, we will be on the first plane, train, or automobile that can get us there. If that doesn't happen, we will be beginning a appeal to the State Department to change its policy. We want so badly to meet with the doctors at Duke and get an idea of what Waverly's prognosis for the next few years will be potentially. Our neurologist did write, letting us know she has contacted the director of the lab doing Oliver's test, stating our situation and that she would like the results asap. Pray that the director listens, responds and delivers quickly. Thanks to all of you!!