Special Needs Gear

Having a child that doesn't walk and has developmental delay starts to get a bit tricky as they get older, and specifically, as they get bigger. You have to think through how you're going to make something work and what tools you need to make it happen smoothly. I have a love/hate relationship with adaptive equipment. I love how it helps Lily and makes our life a bit easier, and I hate how using it can make me feel. Today we went out to Gig Harbor and put Lily in the wheelchair that we are submitting paperwork to purchase. It has good shocks (this is important to us because I don't want to be limited to parking lots and sidewalks). It also has a tray so Lily can feed herself anywhere. We've also opted for it to recline, have a sun shade (or a rain shade if you live in Washington), and hook ups that will let her get strapped into a bus if at some point we send her to school. (We're lucky that her school district is home schooling her--her immune system and seizures could not handle a public school at this time.) It will probably take a few months to get it...there's all the paperwork, Dr's letters, insurance approval, and it is custom made. All in all, I'm looking forward to getting it and will post photos of Lily's new wheels when it arrives.

Also today we bought a bath lounger. It was really becoming unsafe to give her a bath because she would throw herself back or throw herself forward. She's just playing, but she doesn't realize the dangers. Plus she is a slippery little noodle!! You literally couldn't safely let go of her to grab a towel. This will also keep her warmer and baths can last much longer--she loves being in the water!

Seizures are clinically pretty strong (showing strong signs of the seizure) right now, but are only about 10 seconds in length. We'll be checking in with neuro on Wednesday to see if they want to make any further changes to her meds.

Other than that, we're happy, having fun, and ready for Halloween!!!

Fall Foliage

We got out in the sprinkles to enjoy the autumn colors. I love the "talk to the hand" raccoon!!! We hung out with him for a long time. Lily was cracking up in the picture of the three of us because we kept squishing her, and she thought that was quite funny. She's not sick right now and seizures are manageable. She does, however, have a canker core on her lip caused by the Afinitor. :( The carafate seems to knock them out pretty quickly--other than that, we're doing great and having a lot of fun lately!!

Tacoma Holiday Show

Lily and I went to a Christmas show at the Tacoma Dome and had a great time! She was happy and laughing all day!! Lowering the keppra is making a huge difference! Only 2 small seizures! Hooray!!!

I Caught a Smile!!!

It appears that coming down on the Keppra is helping a bit! Hopefully we'll see more improvement as we continue to lower it. Not too many breakthrough seizures yet, but it'll be next week before we'll really see the effect of lowering the med. Until then she's enjoying a few happy moments!

Vision Loss?

Lily has had many vision tests since birth, and she has never had the eye tumors associated with tuberous sclerosis. It's also difficult to check her vision based on her developmental stage, but it is starting to seem as though Lily has some vision problems. I'm not sure if they seem worse or if her recent developmental advancements have made them more apparent. We have noticed that she's not looking at objects far away and while eating in her high chair, she is searching for the food with her hand and not looking at it. We know she can see some, but neuro seems to think that something is not quite right. We've been through so much since sweet Lily was born and have found some modicum of acceptance, but this scares the crap out of me. Teaching her with the limitations she already has is extremely challenging, but if she loses her eyesight, our Mt. Everest is tripled. Because my husband is legally blind (due to an accident), we know the difficulties that come with limited sight, but he manages with a high IQ...for Lily this would be devastating. We already have an appointment at Seattle Children's because we wanted to have her nystagmus examined by a specialist. We've been waiting on this appointment for about 6 months, so we'll have to wait until December 4th to find out where we are.  Could it be a peripheral loss from the Sabril that she took to stop infantile spasms?--yes, but it would be rare based on how long she took it--there would be no treatment for this . Could it be that her epileptogenic tumor is in the occipital lobe and it has damaged her vision?--Yes, there is also no treatment for this...possibly brain surgery but the risks would most likely outweigh the benefits.  Could it be that TSC has produced tumors in her eyes in the last year? Yes, and those could possibly be removed, but it's possible that the Afinitor would shrink them, plus vision loss from tumors is not all that common. Could it be that she just needs glasses? Yes, but we also know that she has other vision issues...eye control, twitching etc. I hope she just needs glasses, and that I look back at this rant and laugh that what makes me go mad is just a magnificent great love for my daughter.

Is Keppra the Culprit?

On Wednesday we saw Jenny at Neuro in Seattle, and we discussed Lily's growing frustration. Really it's more than frustration; it's anger. Sometimes she will scream, kick, and scratch and not for a goal like attention or food because she will continue without an audience and nothing that you offer her helps her emotional state. It has made it difficult to go places with her because she can go into this for hours, and there is nothing we can do to help her.  Keppra (one of her seizure meds) can cause behavioral problems, so we are lowering the Keppra to see if the behavioral/frustration issues decrease. This, of course, could bring about some nasty seizures, so it's a gamble, but isn't it always. Adjusting meds over and over is just a a part of the process. I'm very hopeful that we'll see some improvement because Lily's quality of life is greatly diminished by feeling so frustrated all of the time.

We're also starting a probiotic in the morning to see if we can stave off a lot of the illnesses she's getting. I'm crossing my fingers, and not walking under ladders, and keeping my hat off the bed, and not going near any black cats...hahaha...we really need these changes to help!!!!

Pediatrician Appointment Today

All went well at Lily's Dr appt. Appears there is no ear infection and fever not so high that we would consider a sinus infection. Seizures have been on the increase with the cold. She had 5 fairly strong ones yesterday, and I had to give Ativan to slow them down. Otherwise, we're just trying to get this cold out of here!!!!

Evicting Viruses

Lily had a cold for 3 weeks followed by a one week reprieve. And now another cold. We're headed to the doctor tomorrow just to have her checked out. She again has icky drainage, is pulling at her ears, and is essentially miserable. The thing is that Lily reverts back to being a baby during illness. She doesn't understand that the cold will eventually pass, and she doesn't understand that we can't take it away, so she essentially cries and screams due to frustration that resembles a neonate. It makes me feel just awful for her. Plus, we know that on the Afinitor it just takes so much longer for a cold to pass. I see other kids with colds and they are playing and getting their nose wiped and maybe they're a bit fussy, but not like this. Her little body is so fragile that it just wreaks havoc on her--and it brings the seizures in full force, which just adds fuel to an already unbearable fire. The best thing for us to do is try and distract her and keep her as comfortable as we can. We all also start to get a bit of cabin fever because she does not have the energy or the immune system to go anywhere, and so we will be stuck in the house for a few more weeks. Thank goodness we have Angela to help us~~taking a break from the crying and having a few hours to yourself really helps us come back to Lily with a clear mind and plenty of patience. And in another way, it's so sweet that Lily curls up in our lap and just falls hard into us and seeks our comfort. I would definitely choose for Lily not to be sick if a choice were given...I would evict the viruses! But we have to seek the positive in the present, and I really do love snuggling up with her!!!!!

Dippin' Dots are Dumb

That's ok Lily, I don't really understand the appeal either!!

Great Wolf Lodge Vacation!

We had a wonderful time at the lodge! Lily loved swimming, playing at the arcade (we hit the jackpot twice), eating fun sweeties, making crafts (Lily actually enjoyed coloring), and meeting all the fun wolf characters! We shut off our iphones for most of the trip, and when we came home, realized that we had no desire to turn them back on! Sometimes it's good to escape!!