Sunday, September 1, 2013
Crossing her legs
Such a simple thing, to cross your legs, but it shows even more strength! Plus I love her sweet smile in this photo.
Love Gigi
Lily loves to ride, we know this. But on this ride, she pulled back the sheepskin that she sits on and felt of Gigi's back, then leaned forward, and hugged her. It was a perfect moment--Lily saying thank you in her own way to the amazing horse that gives her strength and hope, and she said it in a way that I'm sure Gigi understood.
Friday, August 30, 2013
Thursday, August 1, 2013
July Update
Afinitor: We have spent a lot of time at hospitals lately. First Lily had a huge canker sore outbreak from the Afinitor. It came on so fast and her whole little mouth and lips were swollen. It seems that the 7.5mg of Afinitor may be too high. The last labs showed that Lily's meds had all dropped by half. She'd had a growth spurt so this seemed plausible, and she was having increased seizures, but maybe this was a lab error or one of the meds from her adenoidectomy caused a change in absorption? We're hoping the new labs that we got on Monday will tell us where she is. Neuro dropped her afinitor to 3.75mg for a month while the sores heal and then on August 15th we'll go back up to 5mgs.
Seizures: We've had an increase in seizures for awhile. 1-3 a day lasting about 25 seconds. The other night we had a 4 minute seizure and had to give an emergency med. The seizures are also making her very tired after--not a good sign. Again, we're waiting on those labs.
Kidneys: We did Lily's yearly kidney ultrasound at Seattle Children's and then went over to Swedish to see her nephrologist for results. Lily has 3 cysts total. She also has amls or kidney stones in one area and some crystallization in the bladder area. We will be doing a 24 hour catheter urine to try and help us determine what these areas really are. It was hard to get a negative kidney result. I wanted to skip the other organ issues of TSC, but that just will not be the case. It made us so sad.
Pancreas/Nausea: Lily has been gagging a lot more lately and seeming nauseous, so we need to check her pancreas to see if all of her seizure meds are causing other issues. Sheesh...poor little thing.
Cognition: Despite all that she's been dealing with medically lately, she is still making progress. She is pointing at her throat for a drink, and she told her speech therapist "NO!" when he kept asking to put a tray on her legs!
This last 2 weeks has been day after day at the hospitals and therapy appointments. We really need a vacation!!! I think we need to write ourselves out a prescription for rest and relaxation! But medical has to come first, and even though she was stuck 3 times on Monday, they didn't get all of her labs, so we have to go back for more. :( I just want to give us all a break....very soon!! Some of the exhaustion comes from the hours of driving on the road to Seattle, so we have decided to move to Seattle proper or a northern suburb...Edmonds, Shoreline, Lynnwood...I haven't spent any time up there, so we'll go and have a look around.
Seizures: We've had an increase in seizures for awhile. 1-3 a day lasting about 25 seconds. The other night we had a 4 minute seizure and had to give an emergency med. The seizures are also making her very tired after--not a good sign. Again, we're waiting on those labs.
Kidneys: We did Lily's yearly kidney ultrasound at Seattle Children's and then went over to Swedish to see her nephrologist for results. Lily has 3 cysts total. She also has amls or kidney stones in one area and some crystallization in the bladder area. We will be doing a 24 hour catheter urine to try and help us determine what these areas really are. It was hard to get a negative kidney result. I wanted to skip the other organ issues of TSC, but that just will not be the case. It made us so sad.
Pancreas/Nausea: Lily has been gagging a lot more lately and seeming nauseous, so we need to check her pancreas to see if all of her seizure meds are causing other issues. Sheesh...poor little thing.
Cognition: Despite all that she's been dealing with medically lately, she is still making progress. She is pointing at her throat for a drink, and she told her speech therapist "NO!" when he kept asking to put a tray on her legs!
This last 2 weeks has been day after day at the hospitals and therapy appointments. We really need a vacation!!! I think we need to write ourselves out a prescription for rest and relaxation! But medical has to come first, and even though she was stuck 3 times on Monday, they didn't get all of her labs, so we have to go back for more. :( I just want to give us all a break....very soon!! Some of the exhaustion comes from the hours of driving on the road to Seattle, so we have decided to move to Seattle proper or a northern suburb...Edmonds, Shoreline, Lynnwood...I haven't spent any time up there, so we'll go and have a look around.
Kayla's Hubby off to the Navy!
We had so much fun going to Kayla's party for Shawn! Lily always loves to see Kayla's siblings!
Mount Rainier & Gig Harbor
Mom came for her July visit, and we took off for our overnight adventure. The views on the drive to Mount Rainier are unbelievable and stopping in at basecamp to shop and watch all of the climbers preparing for their summit attempt was really great!! What totally sucked was our cabin...it was dark, stinky, rotting, had no view, was surrounded by piles of chopped wood and compost brush, and has probably slipped down the mountain and landed in the Nisqually River. We could not sleep there mostly based on the smell and lack of light...when darkness came, it would going to be a sensory deprivation tank! We decided to bail out and explore more of the mountain and head on home. We laughed the whole way home that we just threw our suitcases back in the vehicle and got out of there! We would have been better off sleeping outside!! The next day, we went to Gig Harbor and stopped in at some of the little shops and caught some nice views of a sunny day!
Friday, July 5, 2013
Team Lily in OKC
Deidra sent Lily some toys and Lily's most favorite was the luau necklace! She feels really fancy in it!! And sweet Don sent a check to help with more of Lily's therapies! Thank you guys so much! We love you all dearly!!
Queen of the Daffodils
Kayla and I took Lily to the Meeker Days Festival. We watched some music and one of the band members took an orange balloon off the stage decor and gave it to Lily. Then later we spotted the Queen of the Daffodils, and she spent a long time talking to Lily and made her a pink crown! A perfect day!
Saturday, June 22, 2013
Spring Forward
With the end of Spring, I realized that I hadn't really done a comprehensive update in awhile. And I actually use my updates not only to look back and see where we've been, but also I've used it to compare different meds to each other or therapies to see what is working, so as much as this is a blog to inform friends and family, it is also a history that helps us discover what works best and how to hit those "sweet spots" again.
Seizures: So since we found out that Lily's med levels had dropped to half (most likely due to a growth spurt), and we upped her Zonegran, Clobazam, Afinitor (but actually dropped her morning dose of keppra), seizures have been very good and sometimes nonexistent. She's having about one a day that lasts 15 seconds, but we sometimes have a day or two in a row that appear seizure-free.
Surgery: Lily really took longer to recover from the adenoidectomy and fourth set of ear tubes than the doctors' suppositional time--the afinitor slows down the healing process, so it took about a month before we felt like she was really back to feeling 100%, but she is doing great now, and we really hope that this is the last surgery for this issue! Fingers crossed!!
Therapies & School: Lily is doing really well with school, and we absolutely love her teacher!! She's reading stories and answering yes or no questions on the ipad about the story. Still working with numbers, colors, and reading and other big girl stuff. School and PT with the school district is out for summer, but her teacher will come once a month this summer to keep Lily on track and then her and I will do a few sessions as well. Lily is still doing horseback riding and doing very well with it!! In fact, this last session was by far her best ride ever! It is making her so much stronger! We start with a new speech therapist on Monday; I'm really excited about him because he specializes in children that are not speaking yet...allowing Lily to communicate in whatever way she is capable of now. And we are also starting with extra physical therapy with Lily to further help her strengthen her body to walk.
Development: Lily is getting around like a champ! She's rolling, scooting, bunny hopping on her knees, diving, and sometimes she tries paddling to get around the floor. The paddling is so funny. She's sits on the floor with her feet straight out in front of her and paddles both arms like they're oars in a kayak. Granted, she doesn't get anywhere (turns out she's not a boat), but it's great to see her making ANY effort to explore. She's working hard and doing much better at drinking through a sippy cup with a smaller mouth (long-term goal is a straw and of course a regular cup). She is also doing better with communication...using the iPad, signing happy, and waving bye bye. She is also saying dada and mama. When she says dada it's in a sweet, sing-song daaaaaaaaahhh daaaaaaaaahhh. When she says mama, it's full of anxiety and nearing a psychotic break. MAMAMAMAMAMAMA. Then I ask her why my name sounds like a panic attack, and she just has a laugh or throws herself back and continues to panic. Sometimes I have to bite my lip in an effort not to laugh because that will really make her mad!!
Character: Lily is still the sweetest girl!! She loves to be called a fairy princess---so funny because I avoided the princess term for so long...you know just in case there is a Veruca Salt effect. She loves to be told she is pretty and that she is sweet and kind and smart. She will also lovingly stare at you and sing in a tiny voice that just melts hearts. And she also has a strong-willed opinion on certain things and has an enormous amount of gumption!! I love that she will protest strongly things that she doesn't want. I would, however, like it to be in a more productive way than throwing yourself back, screaming, and kicking the crap out of you!! But it's baby steps :)
So, all in all, we've had some huge steps forward and have seen even faster advancements with the increased Afinitor. It's almost July which is when we do all of Lily's yearly exams...kidneys, brain MRI, dentist, opthamologist, and she will also have labs soon to re-check levels. Other than that, we are in a sweet spot right now that I hope continues. It seems that the bigger she gets, the longer the sweet spots...a light at the end of a very long tunnel!!
Seizures: So since we found out that Lily's med levels had dropped to half (most likely due to a growth spurt), and we upped her Zonegran, Clobazam, Afinitor (but actually dropped her morning dose of keppra), seizures have been very good and sometimes nonexistent. She's having about one a day that lasts 15 seconds, but we sometimes have a day or two in a row that appear seizure-free.
Surgery: Lily really took longer to recover from the adenoidectomy and fourth set of ear tubes than the doctors' suppositional time--the afinitor slows down the healing process, so it took about a month before we felt like she was really back to feeling 100%, but she is doing great now, and we really hope that this is the last surgery for this issue! Fingers crossed!!
Therapies & School: Lily is doing really well with school, and we absolutely love her teacher!! She's reading stories and answering yes or no questions on the ipad about the story. Still working with numbers, colors, and reading and other big girl stuff. School and PT with the school district is out for summer, but her teacher will come once a month this summer to keep Lily on track and then her and I will do a few sessions as well. Lily is still doing horseback riding and doing very well with it!! In fact, this last session was by far her best ride ever! It is making her so much stronger! We start with a new speech therapist on Monday; I'm really excited about him because he specializes in children that are not speaking yet...allowing Lily to communicate in whatever way she is capable of now. And we are also starting with extra physical therapy with Lily to further help her strengthen her body to walk.
Development: Lily is getting around like a champ! She's rolling, scooting, bunny hopping on her knees, diving, and sometimes she tries paddling to get around the floor. The paddling is so funny. She's sits on the floor with her feet straight out in front of her and paddles both arms like they're oars in a kayak. Granted, she doesn't get anywhere (turns out she's not a boat), but it's great to see her making ANY effort to explore. She's working hard and doing much better at drinking through a sippy cup with a smaller mouth (long-term goal is a straw and of course a regular cup). She is also doing better with communication...using the iPad, signing happy, and waving bye bye. She is also saying dada and mama. When she says dada it's in a sweet, sing-song daaaaaaaaahhh daaaaaaaaahhh. When she says mama, it's full of anxiety and nearing a psychotic break. MAMAMAMAMAMAMA. Then I ask her why my name sounds like a panic attack, and she just has a laugh or throws herself back and continues to panic. Sometimes I have to bite my lip in an effort not to laugh because that will really make her mad!!
Character: Lily is still the sweetest girl!! She loves to be called a fairy princess---so funny because I avoided the princess term for so long...you know just in case there is a Veruca Salt effect. She loves to be told she is pretty and that she is sweet and kind and smart. She will also lovingly stare at you and sing in a tiny voice that just melts hearts. And she also has a strong-willed opinion on certain things and has an enormous amount of gumption!! I love that she will protest strongly things that she doesn't want. I would, however, like it to be in a more productive way than throwing yourself back, screaming, and kicking the crap out of you!! But it's baby steps :)
So, all in all, we've had some huge steps forward and have seen even faster advancements with the increased Afinitor. It's almost July which is when we do all of Lily's yearly exams...kidneys, brain MRI, dentist, opthamologist, and she will also have labs soon to re-check levels. Other than that, we are in a sweet spot right now that I hope continues. It seems that the bigger she gets, the longer the sweet spots...a light at the end of a very long tunnel!!
Saturday, June 15, 2013
Chuck E Cheese
This was her first time, and it was so fun to see her really taking in her environment and winning tons of tickets!
Friday, May 31, 2013
Post-Surgery Update
Lily had a really rough time when she came out of surgery, but has done fairly well as long as we keep up advil and tylenol every 3 hours...even at night. Staying on top of the pain has been key for sure! The antibiotic has caused her to have a very upset stomach. We changed about 9 messy, diarrhea diapers yesterday, and she has farts so darn stinky that it could make monkeys fall out of trees! I switched her to the BRAT diet (bananas, rice, applesauce, and toast) to help with her stomach ache and gave mylanta and that seemed to help. She is groggy a lot and then has trouble going to sleep so she's up and down with mood. Moments of screaming followed by periods of laughing. Hopefully as she gets passed the worst of the pain, she'll feel much better having her ears dry and clear. They say that a few days in they can spike a fever and be in more pain due to a scab forming in her throat. Let's hope we miss that boat!
Wednesday, May 29, 2013
Surgery Done
Lily was in a lot of pain upon waking from the surgery, but we were able to get it managed, and we're home now. Lily is drinking but not eating yet. Glad we got her seizure meds down at 4:30! Whew! Pass the coffee....the whole pot. :)
Tuesday, May 28, 2013
Ear & Adenoid Surgery Tomorrow
So tomorrow morning is Lily's surgery for her 4th set of ear tubes and adenoidectomy. The hope is that it will reduce the fluid in her ears and her monthly ear infections. It's really hard to want to do it when we have better seizure control (0-2 mild ones a day). Also, her development is pretty good right now as well. However, she is still taking 2 short naps a day and tires easily, probably a result of all the recent increases in seizure meds and afinitor.
I realize that this is a fairly minor surgery, and we've certainly been through more risky and more difficult procedures, but I'm still so nervous. My tummy is all in knots and I'm trying to keep myself occupied today. Probably my biggest concerns post-surgery are getting her meds down if she doesn't want to swallow and pain management. I've heard that it's actually a few days after surgery, when the scab forms, that it gets rough...and that's when the fever spikes. Eeeek.
On a good note, today in school she picked up a marker to scribble, and this afternoon she did 5 little bunny hops on her hands and knees to move forward. YAY!!!!
I'll update as soon as I can after the surgery. :)
I realize that this is a fairly minor surgery, and we've certainly been through more risky and more difficult procedures, but I'm still so nervous. My tummy is all in knots and I'm trying to keep myself occupied today. Probably my biggest concerns post-surgery are getting her meds down if she doesn't want to swallow and pain management. I've heard that it's actually a few days after surgery, when the scab forms, that it gets rough...and that's when the fever spikes. Eeeek.
On a good note, today in school she picked up a marker to scribble, and this afternoon she did 5 little bunny hops on her hands and knees to move forward. YAY!!!!
I'll update as soon as I can after the surgery. :)
Monday, May 13, 2013
Outside is Best
Lily loves to be outside in the sun! She also really loves to nap in the grass...I'll put her down on a blanket and she'll just move off of it. Sweet nature girl :)
Wednesday, May 8, 2013
Delicate Balance
Lily has had an ear infection every month starting in January. At her ENT visit, he recommended to not only replace her ear tubes for the 4th time, but to remove her adenoid. Since she seems to really have trouble with her ears, we agree that it's the best option at this time. Ear issues tend to increase seizures quite a bit, so as we started to see more and at first it was easily attributable to ears; however, the seizures really started exceed what we would expect with just ear problems so we got labs and neuro took a look this week. Well, Lily's drug levels dropped by at least 1/2!! She's had a big growth spurt which could be to blame, so we went up a few days ago on the Clobazam and starting yesterday we're going up on the Zonegran. With the titrates, we've gone from a few small and often one long 3-4 minute seizure down to about 4 (45 second seizures a day). More and shorter seems to be better on her developmentally as well. But once we start moving meds, it makes her groggy and understandably fussy. We'll also be increasing her Afinitor from 5mgs to 7.5mgs. After 2 weeks of going up on meds, we'll then spend 2 weeks going down on Keppra (a seizure drug) to see if it helps with her mood---Keppra is notorious for causing behavioral problems. We've lowered it before and seen good results but didn't want to lose our sweet spot of near-seizure-freedom. But this time we'll be getting rid of it for good. At the end of all these drug changes over the next month, she'll have surgery May 29th. We're definitely concerned with how we'll get meds down after the surgery. It's so many pills and if her mouth is sore, it could be an issue. We can always crush all the pills and push them in liquid via syringe, but that's a miserable route for all involved---especially Lily.
All that said, her development is still doing pretty good considering. She has her new orthopedic shoes and is doing a great job with practicing standing. She's doing great with her teacher, Ms. Sharon, and swim has been a blast with Ms. Joy. Unfortunately, swim has to hold off until the surgery, but then it will resume. She is still doing horseback riding, but her instructor has been ill and with Lily's lowered immune system could not go, but she'll be riding this week.
Hopefully we can find our sweet spot again with low seizures and forward-moving development. It's always a delicate balance between seizures and cognition, and we have often found that the more control we have over one, the more we lose of the other, but as the Afinitor continues to work on those brain tumors, the more hope we have that we'll one day find Lily is seizure-free and cognitively clear.
All that said, her development is still doing pretty good considering. She has her new orthopedic shoes and is doing a great job with practicing standing. She's doing great with her teacher, Ms. Sharon, and swim has been a blast with Ms. Joy. Unfortunately, swim has to hold off until the surgery, but then it will resume. She is still doing horseback riding, but her instructor has been ill and with Lily's lowered immune system could not go, but she'll be riding this week.
Hopefully we can find our sweet spot again with low seizures and forward-moving development. It's always a delicate balance between seizures and cognition, and we have often found that the more control we have over one, the more we lose of the other, but as the Afinitor continues to work on those brain tumors, the more hope we have that we'll one day find Lily is seizure-free and cognitively clear.
Tuesday, May 7, 2013
Rainforest Cafe
I know! Let's go to a really fun kid place and not take the kids! Commence rainforest cafe adult style. :)
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