As you know, we were at CHOP this week, and that was the reason for the delay in this follow-up post. Some of your questions are my questions too, and I wanted a chance to talk to Dr. Vanderver for the most "up-to-date" info before sharing. I don't have answers to everything, but will answer as honestly as I can for all of your questions. So in no particular order, here goes!
Is leukodystrophy the official diagnosis? Have the doctors determined what type? Has sweet Adelyn been given a new or more hopeful prognosis (it seems she's doing so well)?
*All of these questions are my own - the questions that keep me up at night swirling in my head. The short answer is we truly don't know right now. Adelyn's genetic testing all came back normal in August, which was certainly hopeful. I asked our doctor yesterday specifically, "Is Adelyn considered undiagnosed leukodystrophy, or just undiagnosed period right now?" Dr. Vanderver told me it was a great question and she wished she could give me a clear answer, but assured me that regardless, our care with her and the Leukodystrophy Center is completely unaffected and as a white matter specialist, she will continue to see Adelyn as long as we keep coming to her, and she will keep searching for answers for us. Adelyn has another MRI coming up in the next couple months (not scheduled yet, so I don't know exactly when), and those MRIs over the next few years will be helpful, along with how she progresses, in determining a diagnosis and how she will do long term.
We recently discovered that Adelyn has a few very subtle anatomical abnormalities (like slightly off-centered pupils), that are formed during the end of the first trimester. In going back over my sick days and medical records, I was very sick at that time. There are no guarantees or definites, but there is also a possibility this was all caused by a virus in utero.
We choose to focus on the hope that Adelyn's condition is not degenerative and provide her with all the resources, therapies, and medical treatments she will need to live a long and happy life. And no matter what, we really feel that every day with her is a blessing and a miracle.
What have the latest scans/MRIs shown?
*Her August MRI revealed the hydrocephalus, and because of all the extra fluid around her brain, the doctors were unfortunately not able to see the white matter clearly. At the time, the MRI did show atrophy of the brain, and it was unclear whether or not that atrophy was caused by the hydrocephalus (fluid causing pressure and "squeezing" the brain, essentially compressing it), or if it was the disease regressing. At our ER visit in early November due to unexplained fever, they did a CT scan. This revealed that her brain had grown completely back to normal size, so we now know for sure the atrophy was caused only by the hydrocephalus, and was not progression of disease. However, that CT also showed unexplained bleeding around her brain, which was cause for much confusion amongst the doctors. At her next MRI, they will be looking at both Adelyn's white matter (which should now be clear to see since the extra fluid from her hydrocephalus has been resolved with her shunt), and checking on the bleeding to see if it has resolved, if there is any new bleeding, etc.
Are there any clinical trials for treatment she could participate in, in the future?
*At this point, unfortunately no, because we do not have a diagnosis. Hopefully if we can put Adelyn's puzzle together at some point, we will be able to begin looking for trials she could be part of, but it's simply not possible without knowing the cause of her disabilities.
What will happen to your service dog if/when Adelyn passes away?
*We are hopeful that Adelyn will outlive her service dog. If that were to not happen, we will sure as HELL be keeping that amazing dog and integral part of our family! ;)
Can you have more children? Do you want more children? Will they have the same problems as Adelyn?
*All of my good friends and family know how much I have always wanted a big family. In an effort to keep this an open and honest post, with Adelyn's initial diagnosis, I was hit with blows from so many directions, and I really felt like I was grieving not only Adelyn's grim prognosis, but also the "loss" of children I hadn't had yet. From that very first day in the hospital, when we thought Adelyn's condition was definitively genetic, Mike and I resolved that our family is not done. Whether it be through a normal pregnancy or adoption, Adelyn will have siblings one day. She deserves them, and we know in our hearts that we are called to be parents to more than Adelyn. Now, with normal genetic results, we have a very low chance of future children having similar issues and we are excited and eager to expand our family when the timing is right.
*Stronger than ever before. We need each other, both emotionally and practically in divvying up tasks to meet Adelyn's needs. We are so blessed to have family nearby that is very eager to babysit and provide Mike and I with date nights so that we can make our relationship a priority.
How is Mike with all of this?
*Amazing. Seriously. He's strong, he works harder than ever before, he makes us laugh, he knows what to say when I'm feeling down. I step back sometimes and have no idea how he does it... but he's a big part of the reason I can do it too.
How do you do this?
*I look at that beautiful, perfect baby girl and have all the reason I need. One day at a time.
Are you resentful toward people with "typical" children? Are you angry or bitter?
*Honestly, no. I know that answer isn't the same for every parent with children with medical needs, but I really feel like she belongs to me and I belong to her. There's no one in the world I would rather be mommy to, and that means I take all of her. She was meant to be ours and we'll take the challenges that come as best we can. In fact, ya'll should be jealous of ME that I get to have this sweet babe all to myself! ;)
What do Adelyn's seizures look like?
*Twitching of her arms and legs and an absent stare. They are focal, or partial, seizures, so they aren't quite as dramatic as the "grand mal" seizures you might be more familiar with from movies and such.
How many appointments do you have a week/month?
*This varies quite a bit sometimes, but right now, we have 6 therapies a week, 1 acupuncture session a week, vision therapy once a month, and roughly 1-5 medical appointments a month.
Do all the doctor appointments overwhelm you?
*They certainly could if it weren't for two really important factors: 1. My BOMB medicaid attendant, and 2. I seriously love our doctors and therapists SO much that I genuinely look forward to (most of) our appointments. It feels good to have people on our team, fighting for Adelyn with us.
Do you really need a Medicaid attendant? What does she do?
*Need is a tricky word. Could we survive without her? Yes, we did before we were approved. But having her gives us some semblance of normalcy in a life that otherwise couldn't. By helping with therapies, medicine, and daily tasks for Adelyn, I'm able to do things like household chores, grocery shopping, and eating (many a lunch went uneaten before she started). Since Adelyn can't do independent play and still develop in the way a "normal" child does, I was always having to choose between letting her lie there unengaged (and often crying) or not doing anything else at all. I'll give you a hint which of those options I chose - and our home greatly showed it! Having Lara start as our attendant has made a world of difference in being able to maintain my sanity and feel almost "normal" amidst days filled with therapies and helping Adelyn.
Are you exhausted? Are you getting enough sleep? Do you take any time for yourself? Do you ever feel guilty about it?
*Wellllll I'm a mom, so yeah, I'm tired some days... I bet you are too! ;) Adelyn has always been a great sleeper and I've said that God knew she would be a handful so He at least made sure we are well-rested. Haha. Yes, MOST nights, I really am getting enough sleep. I do take time for myself too. Mike and I get date nights a couple times a month, and I love crafting after Adelyn goes to bed at night - it's my "relaxing" place. I don't feel guilty about it because having that time for myself helps me be a better mom, and that's better for Adelyn. I also think this contributes to why I don't feel angry or bitter (see question above), and it comes full circle that keeping time for myself (and my sanity lol) benefits our whole family.
Do you need meals (even once in a while)? How can I better support you through all of this? Are there any tangible needs that can be met through me or the rest of your tribe? Do you need any additional financial support? Do you say “yes” when people ask to help or do you just say thank you and not take their “help”?
*These questions might be the hardest of all. I guess I have to admit we are terrible at accepting help with two exceptions: 1. family - we abuse their generosity more than we probably should! and 2. when people don't ask to help, they very firmly insist or just do things for us without asking at all. Like I said above, need is such a tricky and relative word. Do we need meals? No - and quite frankly, Adelyn and I have dietary restrictions that make it quite difficult for people to bring us meals anyway (gluten and dairy free). I really do just fine getting meals on the table most nights, especially now that we have a Medicaid attendant. Is it wonderful when people bring us meals anyway? Yes - hell, what mom wouldn't love a delivered meal, special needs aside?? ;) Thankfully our insurance really has covered almost all of the costs associated with our hospital stays, doctors visits, and therapies, so we don't need financial assistance. Honestly, the thing we love most from our tribe is when people tell us they are keeping her in their thoughts and prayers.
What should I say? What should I not say?
*Most parents LOVE to brag on their little ones, and we are no exception! Ask us how she's doing, what's new, her likes and dislikes, and anything else you would ask the parent of a typically developing kid. If you have medical questions about her, just think of it as you would a kid who broke their arm or had the flu... feel free to ask questions about her hospital stays, how she's feeling or doing, etc. Don't -- worry so much about saying the wrong thing... it just leads to more awkwardness! And if you do realize you accidentally said something insensitive or put your foot in your mouth, a simple "sorry, I don't think that came out how I meant it" is perfectly fine - I promise I'll smile and tell you I understand (and mean it!). Don't feel like you have to have the perfect encouraging or inspirational sentiment to share. Just speak what's on your heart, ask about her, tell us she's cute ;), and listen to what we have to share.
Thanks for continuing to join us as we write Adelyn's story! Her tribe keeps us going, and the fact that you care means everything!
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