Busy, Thankful Birthday Month

Life has been busy lately. Cooking takes hours a day and Maddie is no longer sleeping at night. Seizures are slightly improved, but she has not felt good in a couple of weeks and is really lacking energy right now. We are working on this diet (and all her medications) to see if we can get her feeling better. So life is crazy for us as usual.

November is a month of birthdays for the people I love. Today is my sister’s (Happy Birthday Kathryn!) and last weekend was Brandon and Lance’s birthday. There are honestly too many to mention, but most important to me is that on the 30th, Maddie turns three! I hate to admit it, but I actually dread it. I had so hoped that we could turn things around by this birthday. It is a little tough to celebrate a birthday knowing that your child is worse off developmentally this year than on her last birthday. But such is life with catastrophic epilepsy. And so I will suck it up, shake it off, and hope for a really fabulous 4th birthday. Because she really deserves it.

We spent last weekend at the beach at Figure 8 and had a fabulous time. It’s amazing how the beach can just make everything in life seem better. It is alot of work to travel on the ketogenic diet because the stuff that makes my kitchen complete now is not common in most kitchens. So I have created a traveling kitchen of sorts. Although packing it all up is a major pain in the hiney, it was worth it for the time at the beach. Which we hope to do again soon. We are currently back in Charlotte as it was time for Maddie’s monthly oncology follow up appointment as well as her first keto diet follow up.

We have already had her counts checked (paranoia still lurks nearby)but our actual doctor appointment is Monday. According to the counts from Thursday, Maddie’s leukemia is still in remission. We are still waiting for some blood results that relate to the keto diet to decide what our next move there is. On the subject of counts and cancer, I found an omission in my last post here pretty startling. I posted that update the week after the 2nd anniversary of her cancer diagnosis. And I meant to mention it in that update. But it slipped my mind.

I would never have thought that were possible. That her leukemia could slip my mind……Admittedly, we have plenty of other crap to worry about right now with the seizures, and Brandon deployed, and this crazy diet, but the fact that the important milestone of 2 years past her cancer diagnosis could just slip my mind is pretty cool. Of course, she is nowhere near out of the woods. But it feels nice to realize that leukemia isn’t the first thing I think about most days.

I meant to try to keep this short but, in case I don’t get around to posting again before Thanksgiving, I want to mention how incredibly thankful I am for the life I live.

I live in a free country, made that way by the sacrifices of many people who have fought and died for that freedom. Hearing about Brandon’s experiences this deployment helps reinforce in my mind how lucky we are to be citizens of this great country. I am incredibly aware of the sacrifices families all over the country are making right now, missing their loved ones as the holiday season approaches. I meant to post earlier this month to thank all our Veterans and their families. So thank you!

I am also thankful for the financial security that I am lucky enough to have because of my wonderful family and my husband. I can only imagine how our stress would be magnified if it were accompanied by financial hardship because of the catastrophic illness of my child.

I am thankful for the amazing people in my life, most importantly my family. The support that I have had through the last two years is more than any person could ask for. It is astounding to me how much support I receive from my Mom and Lance. And it only recently dawned on me how difficult it is for everyone else in the family, having to deal with the isolation that I have asked Mom and Lance to stay in along with us to try to keep us all healthy. My siblings and step-siblings have in a sense lost these years with my parents because of their vigilance about germs and trying to stay healthy. And none of them have complained about it (at least to my knowledge). I had really hoped to “lift the ban” before these holidays, but it probably won’t be until after this nasty flu season.

And finally, I am most thankful for my husband and daughter. Without the support and love of my husband these two years would have been completely impossible. And Maddie inspires me every day. I am so thankful she is here, and despite the enormous challenges she faces, she does it mostly with a smile. Cancer and epilepsy has taken alot from us, but she is the most precious gift I have ever been given. These experiences, while often quite terrifying, have made me a better, stronger, more loving person.

I leave you with a few pics of our amazing child.


I know, I know…..her hair….. My late Gran (whose birthday is also coming up….Happy Birthday Gran!) would be saying, “Get that hair out of her beautiful eyes!” I wish I could, she hates hair clips and I refuse to cut it again. I’ll figure something out. And isn’t that smile so goofy? But the great thing is, she smiled when I asked her to, and that is not something that has happened in a while for us.

Happy Thanksgiving everyone! If there is any lesson to be learned from us, be thankful for the good things in your life. I know I am.

Love to you all,
Liz

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Moving along

Life is slowly moving along.

Brandon has been gone for over two weeks now. We have heard from him to know that he is safely at the location where his Company will be spending the majority of their time during the deployment.

I try to be super careful about sharing details about where he is to protect operational security, but I have a quick story to share that may give you an idea of how tough this can be. Last Monday, the day we were due to report into the hospital to start the Keto Diet, I had not heard from Brandon in a while and I knew he was supposed to be flying into his new location by helicopter. I was anxiously awaiting news that he was there safely as I personally am scared to death when he is in a helicopter (especially where people like to shoot at them). It was time for me to get in the shower. I checked my email one last time and saw nothing from him. So I decided to do a quick google search, just to make sure there was nothing in the news. And there it was “Three American Helicopters Crash….” And all of a sudden I was brought back to those terrible moments during his first deployment when I would hear a news story and freak out all the way until the next time I heard from him. About to vomit, I left Maddie to play with my mom, got in the shower and began to cry and say my prayers. When I got out of the shower, I checked my email again and found this short but incredibly comforting email from Brandon, “In place.”

And so, I relearned the lesson that checking google and watching the news is no good for me. There is no need to get that horrible feeling that makes me want to vomit. So I am trying to live my life, and get news of Brandon from Brandon only. And if all he tells me is that he loves me and he is safe that is okay. The rest I can hear about once he is home safe with me.

We began the Keto Diet last week and only spent two nights in the hospital. We have not yet seen the miraculous results we were hoping for from the diet, but we are seeing some improvements. The biggest change is that Maddie is basically sleeping through the night for the first time since the seizures started. I feel like a new woman. I had honestly forgotten what life is like when you’ve had a good night’s sleep. Amazing!

The other positive changes we are seeing are in Maddie’s cognition and level of interaction. We have reduced her dose of Zonegran quite a bit, so we are not sure if all the changes are from the diet, or because of med changes. Either way, the changes are great. She is much more verbal. She can answer simple questions. She can sometimes tell me want she wants.

For example, yesterday she was was giving me nose kisses (where we rub our noses together). I asked her, “Who gives you nose kisses all the time?” and she responded, “Dada.” That is their game they play.

When she got bored of playing, I asked her, “Do you want to go shop-shop?” Her response was, “Yeah” while nodding her head yes with excitement. She is just a perfect little girl.

We do have some challenges on the diet. She loves the food, but does not want to drink as much as she is supposed to. This results in me having to hold her down and give her water one mL at a time to try to get her daily allotment in her. Sadly, I have found that she is most receptive to this while she is disoriented during clusters of seizures, so while she seizes I get in as much water as I can. I wish it were not this way, but it has to be done. One big risk of being on the diet is kidney stones, and that is also a side effect of the medicine Zonegran. So it is very important that I stay on top of the fluids. I am trying very hard to do so. Despite my best efforts, when testing her urine to see if she is hydrated and ketotic enough, I have found blood in the urine. This is a precursor to kidney stones, though it can also be indicative of a urinary tract infection (for which she has no other symptoms) or could even be caused by small breaks in the skin from diaper rash. Her hiney is usually pristine (we are big on hygiene here), but the cotton balls which I have to use to test her urine are irritating her skin. Sometime you just can’t win.

Maddie’s lack of desire to drink may stem from a little bit of resentment about my finally weaning her from nursing. We had a pretty rough week here weaning just before the start of the diet. But the tantrums have passed; she still asks for it from time to time, but no longer throws a fit when I say no.

So until her urine stays clear of blood for a while, we are not headed back to Camp Lejeune because we need to be here (in Charlotte) where we can monitor it more closely. With the swine flu craziness everywhere, we are really trying to stay almost in isolation (it is tough when you have to go to the doctor or hospital!) We would love to be back in our home at Lejeune so we could be doing all her therapies, but there is some risk of sickness from therapists who have to work with other kids too. I am not really sure how I want to handle that yet. Plus, here in Charlotte I have lots of help from my Mom and Lance so that I can spend hours a day preparing her meals. For a mom (me) who already far preferred takeout to cooking a meal, this is alot of work. For those who do not know much about the diet, each of her meals is prepared by me weighing each ingrediently with a precision of 0.1 grams. If cooking were ever fun, this would certainly take the fun out of it. After she went to sleep last night, I spent 2.5 hours making just 6 meals. She eats 4 meals a day, so there is alot of time spent in the kitchen. But to see improvement instead of regression for the first time in months…..it is worth it to me.

So the diet has not had much of an effect on the seizures yet, but all the other changes are positive, so we are as enthusiastic and hopeful as we have ever been about any treatment for her seizures.

Love to everyone,
Liz