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.
Thursday, June 26, 2008
Tuesday, June 24, 2008
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!
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.
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 Youtube.com 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!
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 Youtube.com 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.......
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.......
Friday, May 23, 2008
Pictures
Mira has been having a great week - lots of smiling, giggling, and being in a great mood all around. The weather has been great, so we have been able to spend a lot of time at the park and have the windows open at night (with the attic fan on it seems to help Mira sleep better) which is a bonus. Mira has been able to make it to hippotherapy for three weeks in a row with out getting rained out! She has been doing really well on the horse, yet still being very particular about facing forward.
Mira's skin has cleared up dramatically since we started giving her acidophilus every day. I don't know what it is about probiotics, but if we stop giving it to her, the rash and irritation comes back the next day. You have to love the friendly bacteria. This rash on her face has been around for a long, long time and it worsens when she is rolling around on the floor.
Speaking of rolling, we have been spreading a quilt out on the floor for her every day and she loves having roll time. The trouble is, she is getting increasingly quick and will end up on the hardwood floor in no time. Sarah also ordered a swing online that we are going to start using, in an effort to get her excited about moving around. She is constantly moving and squirming and we want her to be able to be as active as possible out of her chair and not be on the floor so much. We occasionally put her in the swing at the park, but she can only lean forward and it's a lot of work for her to keep her head up and forward in those swings. This swing is in more of a reclined position so hopefully it will work better.
Other than that, not much else happening here. Still seeing some head drops and other quirks, but nothing major with Mira. Sarah is really exhausted these days, hitting the last month before the baby gets here!
Mira's skin has cleared up dramatically since we started giving her acidophilus every day. I don't know what it is about probiotics, but if we stop giving it to her, the rash and irritation comes back the next day. You have to love the friendly bacteria. This rash on her face has been around for a long, long time and it worsens when she is rolling around on the floor.
Speaking of rolling, we have been spreading a quilt out on the floor for her every day and she loves having roll time. The trouble is, she is getting increasingly quick and will end up on the hardwood floor in no time. Sarah also ordered a swing online that we are going to start using, in an effort to get her excited about moving around. She is constantly moving and squirming and we want her to be able to be as active as possible out of her chair and not be on the floor so much. We occasionally put her in the swing at the park, but she can only lean forward and it's a lot of work for her to keep her head up and forward in those swings. This swing is in more of a reclined position so hopefully it will work better.
Other than that, not much else happening here. Still seeing some head drops and other quirks, but nothing major with Mira. Sarah is really exhausted these days, hitting the last month before the baby gets here!
Tuesday, May 13, 2008
Thumper
I spoke with Mira's neurologist (or at least his nurse) about raising Mira's dosage and we agreed to wait it out another week to see if Mira can get all of the congestion out of her system. It's been lingering around for a few weeks now and she still has loads of snot - I don't know of a delicate way to put it. We stocked up on Kleenex at Costco last week and have since gone through half of it!
Sarah and I have been seeing a lot of head drops lately, maybe up to a half dozen or so a day that we catch. I saw a couple this morning and one when Eli and I were out in the park with Mira. Despite this, Mira is still in a great mood, eating well, and drinking well - all of the things she should be doing.
Mira has taken on the name 'Thumper' since one of her favorite things to do these days is kick. If you hold her in your arms, with her facing away from you, she kicks and 'thumps' like a miniature tornado - arms and legs going everywhere. She is also constantly arching her back, which makes it nearly impossible to sit her on your lap, let alone try and hold her. She seems to be in constant squirm mode.
Changing her diaper has become a real challenge, since all she wants to do is throw her legs up in the air (usually at you) all while twisting, turning, squirming, and generally trying to kick her way out position. Don't get me wrong - it's fantastic to see her moving so much and exerting an incredible amount of energy, but it is a total 5 minute workout for Sarah or I just to get her changed.
Sarah and I have been seeing a lot of head drops lately, maybe up to a half dozen or so a day that we catch. I saw a couple this morning and one when Eli and I were out in the park with Mira. Despite this, Mira is still in a great mood, eating well, and drinking well - all of the things she should be doing.
Mira has taken on the name 'Thumper' since one of her favorite things to do these days is kick. If you hold her in your arms, with her facing away from you, she kicks and 'thumps' like a miniature tornado - arms and legs going everywhere. She is also constantly arching her back, which makes it nearly impossible to sit her on your lap, let alone try and hold her. She seems to be in constant squirm mode.
Changing her diaper has become a real challenge, since all she wants to do is throw her legs up in the air (usually at you) all while twisting, turning, squirming, and generally trying to kick her way out position. Don't get me wrong - it's fantastic to see her moving so much and exerting an incredible amount of energy, but it is a total 5 minute workout for Sarah or I just to get her changed.
Wednesday, May 7, 2008
This Week
Mira has been doing great this week. She was cranky during PT/OT, but did well. She is finally getting a lot of the phlegm out of her system and has turned a corner with her sleeping. Her sleep patterns are much, much better when she is feeling well. She slept through the night last night for the first time in weeks!
We are crossing our fingers that we don't get rained out for hippotherapy tomorrow, but we have been getting rain off and on today and more is forecast for tomorrow.
We moved forward with the aCGH (genetic micro-array) testing on Monday. Children's Mercy is sending it through a private genetic company for testing, so as it was with the other genetic screens, it will be back in about 6-8 weeks.
I had the pleasure of sitting through a 4 hour city planning commission meeting last night, for yet another cell tower proposal. Cingular threatened back in 2005 to put a cell tower about 50 feet from our house, in the middle of a park no less. After an exhausting fight, they were denied a special use permit and eventually the issue went away in 2006. Now, T-Mobile wants to put a massive 120' monopole about three blocks from us, which we could still see from our back yard. Again, the application was denied. Fortunately, we have really proactive neighbors (some of which are attorneys, conveniently) who are always willing to fight such proposals.
We are crossing our fingers that we don't get rained out for hippotherapy tomorrow, but we have been getting rain off and on today and more is forecast for tomorrow.
We moved forward with the aCGH (genetic micro-array) testing on Monday. Children's Mercy is sending it through a private genetic company for testing, so as it was with the other genetic screens, it will be back in about 6-8 weeks.
I had the pleasure of sitting through a 4 hour city planning commission meeting last night, for yet another cell tower proposal. Cingular threatened back in 2005 to put a cell tower about 50 feet from our house, in the middle of a park no less. After an exhausting fight, they were denied a special use permit and eventually the issue went away in 2006. Now, T-Mobile wants to put a massive 120' monopole about three blocks from us, which we could still see from our back yard. Again, the application was denied. Fortunately, we have really proactive neighbors (some of which are attorneys, conveniently) who are always willing to fight such proposals.
Saturday, May 3, 2008
6 Months Seizure Free*
Yesterday officially marks Mira being seizure free for 6 months, but I say that with an asterisk. We have been seeing what we think are small seizures or at least something over the past few weeks. Mira has been battling this cold off and on for a while, so we are chalking it up to her being sick (which lowers one's seizure threshold) or considering the possibility that we need to increase her meds. I contacted her neurologist about it and we are taking a wait and see approach for now, at least until she gets over the cold and phlegm out of her system.
As I was getting her ready for bed tonight, she had a small head drop and her eyes fluttered very briefly. All of it lasts less than a second. I know it was something, because I have seen it thousands of times before - I was just hoping they would never return. Anyway, Sarah and I have noticed these small twitches/episodes every so often over the past week or so, but we aren't getting too worried at this point. If it happens, it will happen and we have a plan of attack.
Sarah is enjoying a very brief girls' weekend in Saint Louis with her sister and Auntie Tisha. Daddy gets to stay at home in KC and do laundry!
As I was getting her ready for bed tonight, she had a small head drop and her eyes fluttered very briefly. All of it lasts less than a second. I know it was something, because I have seen it thousands of times before - I was just hoping they would never return. Anyway, Sarah and I have noticed these small twitches/episodes every so often over the past week or so, but we aren't getting too worried at this point. If it happens, it will happen and we have a plan of attack.
Sarah is enjoying a very brief girls' weekend in Saint Louis with her sister and Auntie Tisha. Daddy gets to stay at home in KC and do laundry!
Thursday, May 1, 2008
Hippotherapy - Finally!
After waiting for 6 months for an opening and getting rained out for 5 weeks in a row, Mira finally had her first full hippotherapy session this afternoon. She did wonderful, even grabbing onto the ring saddle on the horse a few times. Her therapist said that the grabbing was unprompted and she did it on her own. Mira definitely didn't care for riding backwards, crying every time they tried to turn her around. Her sessions were supposed to start in the first week in April, but were rained out every single Thursday until today. The only bad news about the hippo is that it's a 45 minute drive to Baldwin City from our house, but well worth the drive and it's only once a week.
I was able to take the day off (Sarah still isn't feeling well) and actually saw what Mira goes through on her heavier therapy days. This morning she had PT in house, then vision therapy in-house after lunch, then hippo in the late afternoon.
I was able to take the day off (Sarah still isn't feeling well) and actually saw what Mira goes through on her heavier therapy days. This morning she had PT in house, then vision therapy in-house after lunch, then hippo in the late afternoon.
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