Meet the McNeil Family

Meet the McNeil Family

Sunday, March 30, 2008

Chasing Shadows

* Just a little business to begin my post. Please feel free to pass on or create a link to our blog. We figure the more people out there who become aware of our story, the better for Waverly. *
We are still in PA. We are hoping to hear back from insurance and CHoP with Oliver's test result within the next 2 days. This waiting has been terrible. We feel like we need to be doing something, but we are stuck. Today we did take Waverly down to our local park. She loves running around in open fields, chasing her shadow and picking up every stick she can find. Matt and I just followed her around, chasing her and picking her up after her many falls. We just enjoyed the moment with her. We have a car arriving this week from Idaho. My beautiful Aunt Donna & Uncle Ed gave it to us as a gift and my Uncle Guy & Aunt Tari arranged for it to be delivered to us. Thanks to all of you!! It is so nice to not have to think about that specific need anymore. We are just taking things one day at a time and trying to focus on one step at a time.

Friday, March 28, 2008

Sinking In

I can't believe it has been one week since we learned that Waverly has MPS III. We were supposed to fly back to London tomorrow night. We rebooked our flight for next Saturday. We are hoping to get an answer back from our insurance company on Monday or Tuesday (we spoke with our contact today). Our neurologist is hopeful that Oliver's results will also be in some time next week. Once we have more information, we hope to be able to make some plans. Everything feels so up in the air. We aren't sure about so many things..insurance covering our initial trip to Duke, the transplant, returning to live in London, moving to the US. Each day I feel like we are realizing just how huge of an impact this is going to have on our lives.

Wednesday, March 26, 2008

So Many Decisions

We have made one decision in a long line of decisions today. We heard from our insurance company and after we petitioned them to change their mind regarding Waverly's treatment, they are going to reevaluate their decision. I spoke with a very nice man (nice until he says no to me and then he will be evil) who is advocating for us to the insurance powers that be. He is going to need 2-3 weeks time. At first I just wanted to scream - I don't want to wait - I don't want Wavey to lose even more time to this disease. But then I stepped back and thought that in 2-3 weeks, I will have the answer about Oliver. Matt and I will be able to make the best decision about whether or not to go through the transplant, if we have as many pieces of the puzzle. Oliver's health is such a HUGE piece!! So, I called Duke and rescheduled the appointment. They are wonderful and hopeful with us that they will only be testing one of our children. Matt and I both felt like tonight we were able to breathe. There are so many decisions ahead for our family...some are so difficult I wonder how we will be able find an answer. I am not sure why this is happening to my Waverly. But, I know that God is good (thank, Holly!). It is in that very basic premise that I am going to rest tonight.

Tuesday, March 25, 2008

Insurance...AHHHHHHH!!!!

We have just been denied by our insurance company to pursue testing at Duke. They do not include MPS III on their "approved for bone marrow transplant" list. We are, obviously, going to take up the fight to get them to make an exception. We are also working with those at the State Department who manage the health insurance policies to see if they can make an exception. Please pray that we can get approval for this. Even if we decide against the transplant, we really want the opportunity to visit Duke, go through the tests and make the most informed decision possible. We hope to get some answers asap. Pray!!!

Monday, March 24, 2008

Very Dark Day

I spoke with a few parents today who have kids with Sanfilippo. It was very difficult to hear their stories. We also sent Oliver's sample to the lab. Our neurologist is going to try to expedite the test as much as possible for us. Matt and I need some major prayer.

Sunday, March 23, 2008

Wavey On Her Horsey


Stream of Thought

Thanks to all of you who have e-mailed, posted or called us these past few days. As you can imagine, we are simply unable to respond at this point in time. We are trying to enjoy this weekend with my family. Waverly adores her cousins and this may be her last time around them for awhile, should we decide to go ahead with the transplant. Everything seems to be happening so fast....yet I want each day to last an eternity and cherish each of Waverly's laughs, smiles, and words. Today she rode a pony. She kept saying "horsey, I excited, favorite". It was such a wonderful memory!! I should have taped it. We received a packet of information today from Duke describing the bone marrow/cord blood transplant. It was totally overwhelming at first, but than I devoured all of the information I was given. I have to suck it up and educate myself, no matter how scary it all is. The future plans are VERY unclear...but we do know that Matt and I are going to take Wavey to Duke the week of March 31st for preliminary testing/evaluation. At the end of that week, we will make a decision to go ahead with the transplant or seek some kind of alternative treatment/therapy. I know nothing beyond that point. These next few weeks are going to be hell - deciding what to do next and waiting to hear if Oliver is going to have it as well.

Friday, March 21, 2008

Heading To North Carolina

I am taking Waverly to Duke on March 31 for a week of outpatient testing. There is a doctor there who believes Wavey is a good candidate for a cord blood transplant. While this will not stop the progression of MPS, it will combat some of the symptoms and delay the onset of some others. This means a 6-8 month move to NC for the transplant. We are still working out details on how to make this work. Some of you have asked about Oliver. There is a chance he has MPS as well. He is going to undergo a test and we will get the answer back in one (VERY LONG) month. Please pray for us. This continues to become bigger than all of us. Some of you have also been wanting to help in any way. As we discover needs, I will be asking for your help. Thanks for all of your prayers. We long to be surrounded by them right now.

Thursday, March 20, 2008

We Have A Diagnosis

Waverly has mucopolysaccharidoses (MPS), specifically it is known as MPS III or Sanfilippo Syndrome. Even though we have been waiting anxiously for a diagnosis, nothing could have prepared us for this devastating news. I am not emotionally or physically capable of writing more at the moment. Here is a link for further information: http://www.nlm.nih.gov/medlineplus/ency/article/001210.htm

Thursday, March 13, 2008

Daddy's Home

Matt arrived safely this afternoon. Waverly was so excited to see him. She clung to him and cried. It was so sweet. We head to Ohio & Indiana tomorrow morning to visit Matt's family.

Wednesday, March 12, 2008

Reunion!!!

Matt arrives tomorrow afternoon!! We are all super excited to see him after almost 1 month apart. The kids and I will pick him up from the airport and then we are off to dine at Chipotle, per Matt's request. It should be a wonderful reunion for all of us.

Monday, March 10, 2008

Our Doctors Actually Return Our Calls!!

I spoke with the metabolic doctor tonight. He is unable to fit Waverly into his schedule before we plan to leave. He did, however, look at all of her results and her MRI while we were on the phone. He is going to recommend further testing to our neurologist and continue to consult on Wavey's case.

Saturday, March 8, 2008

Some News

I spoke with one of Wavey's neurologists yesterday. (Have I mentioned how much I love our doctors!) She said that the 2 most important tests are still pending, but the other tests have come back normal. The MRI is still abnormal. She is going to compare Wavey's 2 MRIs to see if there have been any changes - positively or negatively. She has also referred us to a metabolic doctor. They found a few more issues regarding enzymes that they want to research more fully. So, no real news...other than the comfort I find in having doctors determined to help us. We are confident that on March 20th we will have more information and a detailed plan on what we are going to do next.

Wednesday, March 5, 2008

The MRI

Waverly had her MRI today at CHoP. Everything went well. She was a very good girl throughout the procedure and even woke up semi-cheery...until she fell and bumped her head. (It was my fault. I forgot how floppy the medicine made her.) The doctors were very kind. They normally would have rescheduled her MRI, because of the ear infection But, they decided to go ahead and do it, due to our time constraints. I was so thankful. Thanks to all of you who were praying for us. We will get the results in about 2 weeks when we meet with her neurologists again.

Tuesday, March 4, 2008

I Love Antibiotics!!

I took both kids to the doctor yesterday afternoon. They both have terrible ear infections. Waverly's was so bad that it ruptured her eardrum! (It sounds scary, but the ear drum will heal itself.) They started antibiotics last night and Waverly is already acting so much better. Oliver still have a rough night's sleep, but I think he will be feeling better today. I am so thankful that we were able to figure out the problem and treat it. We will finally be able to leave the house soon. I called CHoP and they are still going to go ahead with Wavey's MRI, unless she is still really sick tomorrow. I am glad that we do not have to reschedule it. Matt comes into town in 9 days. We can't wait to see him!!

Sunday, March 2, 2008

Still...

The kids are still sick. We have been housebound for days I am hoping that Waverly will be healthy enough for her MRI on Wednesday. We have cabin fever!