Lily Feels Bad

Poor girl is just miserable from this cold. Today she has had 8 seizures, 6 were pretty small, but by evening I gave ativan to try and curb them and not have continued clusters. She gets really fussy and then if I say to her "Lily doesn't feel good; Lily has a cold; Lily's tired and achey," she smiles and snuggles. Everyone just wants somebody to understand when they feel bad, Lily is no different. Poor girl--I would like a whole month where Lily is not sick. We'll just keep wishing upon a star; sometimes dreams need to come true faster, don't ya think?

You Give Me Fever

Lily has a cold. :( She's been running a fever around 100 on advil, and without it, she would be scalding. Since she's on the immuno-suppresant med, it always takes such a long time for a virus to pass. Fortunately it's just a runny nose and the fever--no coughing, but she's been up quite a bit in the night and often she ends up in our bed watching Shrek on the iPad to distract her until she falls asleep again. Poor thing. Seizures have not increased so that's good! She just wants to snuggle in your lap all the time, and really, I just feel like it's bonus snuggle time!! A great excuse to watch movies and curl up under a blanket together!

Tuberous Sclerosis Walk Seattle

This was our first TSC walk in Seattle! We had a great time seeing friends we've made that are on this journey with us and making new friends as well. When we first arrived I stepped away to have a little cry. It was a bit overwhelming to see all of these children and parents that struggle with tuberous sclerosis. It was also amazing to see that we were all here to fight for more research and the hope for a cure!! The bottom photo is of our friends Beth and Kyle and their beautiful boy Sawyer. He is absolutely adorable! They came in first place for raising the most money for the walk--over $5000!! GO SAWYER!!!

Renal Results and Seizures Update

Yesterday we went to Seattle Children's for Lily's renal ultrasound and then to Swedish Hospital for her nephrology appointment. The ultrasound showed that her kidney growth is normal, and that the tiny echogenic spots are mostly likely tiny vessels and not calcification. They could be early angiomyolipoma, but the afinitor should (we hope) keep those from growing if they are. They are less sure about the medullary echogenicites; they could be crystals (kidney stones), but they haven't progressed since the last ultrasound, so we will keep her on the citrate but it has been lowered to twice a day rather than 3 times, which is really great since it's the hardest med to get down! We will have an appointment at Seattle Children's with Dr. Grady (her awesome urologist) to see if the reflux is causing her UTIs or if she is just susceptible to UTIs and whether the ureteral reimplantation surgery was a success. From my understanding, the surgery prevented the infection from advancing to her kidneys so easily, but did not guarantee no UTIs...just less severe ones. Nonetheless, we'll see Grady in about 2 weeks and get his opinion. Also, Lily's seizures have been increased still. It seems as though bumping the melatonin a bit helped, but then when we had to return to her normal 6mgs that the sleep issue and seizure issue returned. Her neuro has recommended bumping her to 9mgs for the time being. Hopefully if she can get a good night's sleep and the seizures will back down; however, it's hard to tell whether the lack of sleep is causing the seizures or the seizures are causing lack of sleep. Sometimes I want to channel a medical version of Sherlock Holmes and let him come to sudden enlightened scientific conclusions that would solve all of our medical mysteries. Until then, I will keep extensive records and continue our detective work.

We owe, we owe, to three more appointments we go

Lily has three Dr appointments this week...about the normal number. We'll go in on Tuesday for a check up with her pediatrician, and then on Wednesday Lily has a renal ultrasound followed by an appointment with the Nephrologist (at a different hospital). We'll be all over Seattle on Wednesday! Lily's seizures are a bit reduced in number, so hopefully getting better sleep has provided some improvement. Lately we're really focused on trying to pay hospital bills and get Lily a wheelchair. One thing that really adds to the difficulty of having a medically complex child is the enormous amount of bills. We owe so much money, which is difficult but if you can just set up payments it's manageable, but one of the hospitals Lily goes to requires that you pay them off in a year, so if we rack up a $12,000 bill in a year (and usually it is more than this), they want $1000 a month. Eeeek. So we also spend a lot of time trying to negotiate payments or in simpler terms...we beg. Also, Lily needs a wheelchair and coming up with a couple thousand dollars that we will owe after insurance is tough. We've been trying to come up with ideas on how to get her one. It's hard to watch families that qualify for state insurance get every service and piece of equipment that their child needs. Not that I don't want them to get everything they need, but I wish that Lily could also have everything she needs to help her in life as well. She needs a bath chair (baths are getting exceedingly difficult), a wheelchair, speech therapy, and other things. We're not rich people, but we make over the amount to get any help, so it's all on us. But we will find a way because our love for her exceeds all the bills combined.

Seizures on the Increase

Lily's seizures have been at 0-3 a day with most days being 0-2, but now the seizures have increased to 2-3 everyday and they seem a little more intense. She hasn't been sleeping all that great, so we're wondering if she has again built some tolerance to the melatonin. So for 3 days we backed the melatonin down to 3mgs and tonight we'll bump it to 6mgs; hopefully this will give her a good night sleep and lower the seizures. If they continue, it's hard to want to increase her seizure medications much when she's cognitively doing so well, and we know that titrating the meds sometimes results in cognitive losses. It's a fragile game of give and take, and it's always a balance of seizures and development. Regardless, we'll give the melatonin trick a try, and if we don't see a decrease we'll let her neuro team know and make a decision on our next move. I find it difficult to accept that seizures everyday is the norm. It still hurts to see her have seizures, still breaks my heart daily, still scares me, still want them gone, but until that day comes, we have to face them, and we have to be smart about how to fight them. No seizures and No cognitive progress is not an option either.

Thanks Angela!!!

You are so good with Lily, and our lives are better because of your help and dedication.

Looking up!

I could have laid here all day! Lily loves to be outside with us!

A Sunny Day in Washington!

Lily loves the water!!!

Jimi Hendrix Memorial

Daddy & Lily

Daddy + Sun + Guitar = Nap

Olympic National Forest Road Trip

Lily Update

Lily is doing really well as of late. She is still feeding herself!!! Bravo!! Recently she developed a UTI and had to do 2 rounds of antibiotics, but has recovered well. Along with all of the enjoyable cognitive changes, Lily has also entered Toddlerdom! She is doing an amazing amount of screaming, screeching, etc. We actually took her to the doctor because we assumed that she must be ill, but as it turns out, she's physically well but has entered into the very normal tantrum stage! Actually, this is good! However now we're actually having to do some typical parenting! It's so easy with a disabled child to turn into a helicopter parent...always hovering and checking. Especially when daily seizures are a part of your life. We are learning, however, to give Lily more independence and she is happy (most of the time) to take it. We're adjusting ourselves to Lily's new growth and looking forward to allowing her to work through it and do a bit a playing and entertaining on her own. So, a little growth, a little freedom, a little screaming!!

Road Trip

Mom and I took a road trip around the Olympic National Forest. It was an amazing trip; in fact, I think it is the best road trip I've ever taken. We drove past Crescent Lake which was the most gorgeous aqua waters I've ever seen. We stayed the night in Forks and made Twilight jokes all night, and then headed down the Western side of the Forest, passing through the Hoh Rainforest and stopping at Beach 4 to take in the Pacific Ocean and then drove through Aberdeen and Olympia before making our way back home. We laughed and took photos and just enjoyed the spontaneity of doing whatever the road presented. This was also Daddy and Lily's first overnight alone without mommy. They had loads of fun together and had some real bonding time. I cried before bed since it was the first time in 3 1/2 years that I slept without Lily just down the hall. It was good for me, but I also had the chance to miss my sweet girl!

Catch up

We've been so busy with vacation etc. that I haven't updated! My mom came to visit and we had the BEST road trip ever through the Olympic National Forest. It was so much fun!!! Lily is on her second round of antibiotics for a UTI, but otherwise we're doing great. I will post photos and such soon!