Sunday, June 29, 2008

Mira Turns 3

On Saturday, Mira turned three years old. I couldn't help from having a small pity party for her as I was putting her to bed for the night. I thought about what Mira and our family have gone through over the past three years and what the future holds for her. It has been an emotional roller coaster to say the least, one that I would hope and pray that no one ever has to endure. What really made me most sad is that Mira didn't even realize that it is her birthday, which is a time of great happiness for most kids - getting presents, blowing out candles, eating lots of your favorite cake, and running off a sugar high for the next three hours. I can't help sometimes to ponder various scenarios with Mira, wondering what life would be like if she hadn't been so affected by all of this and how different things would be if she just were able to be aware of people and engage with her surroundings. I don't know how to explain it. It's watching other three year old kids running around in the park and desperately wishing the same will happen for your child. It's a constant craving as a parent to want to have a connection with your child somehow. It's a hope that your child recognizes you in some fashion, whether through a smile, laugh, or a simple visual gesture. It's just wanting your child to be happy and constantly questioning whether or not they truly are.

Thursday, June 26, 2008

Settling In

It's been a few days since we left the hospital and we are finally getting settled in. Eli has been back at school for 2 days a week and Mira is back at therapy. I was able to take her to PT and OT sessions yesterday and she had vision in-house today. Her week wraps up with feeding and group therapy tomorrow morning, which I also get to attend. Sarah gets a 'break' from Mira's therapies (which translates to taking care of Jonah at home) for the week while I am off work.

Eli is adjusting to the baby very well. He seemed pretty freaked out when Jonah was screeching at the top of his lungs the first day back from the hospital, but has gotten used to it by now. Mira cackles every so often when Jonah is crying, since his cry is reminiscent of a mix between a high-pitched baby pterodactyl and a squeak toy. It's distinct to say the least.

Mira started one of her hunger strikes over the weekend and she finally caved at dinner this evening. I was able to get her to finish off a small bowl of sweet potatoes, which is the first 'full' meal she has had in days. Nothing seems to break her cycle of not wanting to eat - we try and switch her meals up and offer up new things, but nothing makes a difference. She just decides that she wants to start eating again and we are forced to wait it out.

Since we have been seeing an increase in her head drops and jerks, we decided to move her dosage back up to 75mg daily. It hasn't been a dramatic increase, but a slow and steady one over the past few months in the frequency and intensity of her spasms/episodes. Sitting through her 1 1/2 hour therapy session yesterday, I saw at least a half dozen. I spoke to neurology yesterday and we agreed to move her dosage up over the next few days. We may just hold steady at 75mg until our appointment in the middle of July and see where she is at then. Still, no full blown tonic-clonics or anything, which is good.

Tuesday, June 24, 2008


Some quick pictures from Jonah's arrival this weekend More to come!

Sunday, June 22, 2008

New Arrival

Jonah Frederick was born early this morning, weighing in at 8 pounds, 7 ounces. Mommy and baby are both doing great. We hope to be out of the hospital tomorrow. I will post pics and give a longer update when we get settled in at home.

Mira has been really fussy the past 2 or 3 days, going on one of her hunger strikes and getting up in the middle of the night again for hours. Poor Auntie Aura stayed up with her last night while we were in the hospital. It might take a while to get back into a rhythm once the new baby is home, so wish us luck!

Friday, June 13, 2008

Lyrica Trials

I spoke with neurology about Mira's ongoing head-drops and what look like myoclonic seizures. We basically haven't really seen any improvement in the frequency or intensity of Mira's head drops, so we decided to actually decrease Mira's dosage back down to 25mg 2xs daily. We are going to see if things get worse and if so, we will increase it again, most likely above and beyond her current dosage, which is 25mg 3xs daily. All of this is on the direction of our neurologist of course.

Our neurologist (and the neurology clinic in general) doesn't have the experience with kids taking Lyrica, since it is so new to the market. We agreed that it has really been the miracle medication for Mira and we are not about to abandon it yet. This sort of 'reverse' trial dosage is to really see if Mira is really reacting to the Lyrica or to see if we need to look at alternatives or adjunct therapies. I hope that it is just that we need to do some tweaking with her dosage and the aim is to not have her so over-medicated that she isn't able to do anything. There's some action or mechanism at the cellular level (I guess) with Lyrica that has been helping Mira, which could be a clue as to why she is having seizures. If she reacts to lowering the dosage, we will know for sure.

We are also going to push for another EEG, since Mira hasn't had one since last November and all of this new seizure activity would warrant another.

Tuesday, June 10, 2008

Updates + Microarray

Well, first things first. I spoke to neurology yesterday and Mira's microarray came back normal. This was probably the last of the genetic screens that we will be doing, unless her neurologist has something specific in mind for additional testing. We have pretty much exhausted all of the reasonable screens and anything that we would be testing beyond this point would be a stab in the dark.

We have still been seeing a fair amount of head drops with Mira, so there is concern that the dosage increase hasn't done much yet. We are going to give it another week at the higher dosage and see what happens. If things don't improve, we will either take her back down or perhaps try something different. Mira's temperament has improved a little over the past few days, so there is hope that the increase is potentially helping in other ways.

Mira had her first haircut today! Her hair was getting seriously unruly and Sarah seemed to spend half her day getting knots and rats out of her hair, which Mira really detests. She did great, all things considered. We sat her on my lap while the stylist did some quick work, taking about 4 inches off the back. It took Sarah and I together, with all hands on Mira, just to keep her from flinging and thrusting backwards. Mira is getting very strong and has developed 'abs of steel' from squirming and arching so much.

I posted a few videos on Mira's site (see link to at the right). One is of Mira's new swing that we installed on the trellis in the back yard, which she loves. Sarah managed to find a swing for her that puts her in more of a reclined position and it works great. The other video is of Mira's new found love - hearing the trumpets from Sarah Vaughn's 'Whatever Lola Wants'. Yes - completely random how we discovered it. We had the iPod on one day and Mira was over in her chair just chuckling away, but only at certain parts in the song. We discovered it was the trumpets that really cracked her up.

Last but not least, the countdown continues for the baby. Sarah had some contractions over the weekend, but nothing after that. Still waiting!

Thursday, June 5, 2008

Doing Better

Mira has had a slightly better few days, but has still been fairly crabby. We managed to get a few chuckles out of her for dinner, despite her ongoing hunger strike - perhaps she thinks it's funny to not eat?! She managed to gag on her meds and vitamins this morning, ending up with a lap full of milk and a warm bath afterwards. (She laughed during this episode too.) She has been tolerating the increased dosage well so far and we haven't seen any side affects as of yet.

Tuesday, June 3, 2008

Crabby, Crabby, Crabby

After having a great week last week, Mira has been really, really crabby over the past week. She is fussing a lot and we cannot figure out why. She has been taking power naps in the middle of the afternoon and when she isn't sleeping, she is fussing. We have been seeing about the same amount of head drops as the week before, so perhaps it's something else that is bothering her.

She also started one of her hunger strikes a few days ago, where she won't eat anything and it is a struggle just to get her meds in her. She is getting really good at resisting pills, spoons, and is partial only to one thing - her bottle. And yes, the bottle MUST be warm or she will snub it before you can say 'fussbot'.

Speaking of meds, we decided to up her dosage today, since she is completely snot-free and still having some sort of seizure activity. We are hoping that bumping her up will help get rid of the head drops, but we have been down this path many times before. For 6 months, Lyrica was the miracle medication for her and we hope that it continues to be. It will take a few days for her to feel the increase, so we will watch her closely.

Have to go - the fussing continues.......