Monday, December 29, 2008

Healthy as a Horse

My sister told me on Christmas that next to spinach, sweet potato's are the best food you can eat.
I thought well that is awesome! Not because I eat sweet potato's, actually you'd have a better chance of catching me eat my own arm than a sweet potato, or a cooked carrot for that matter, but it is awesome because my Lily LOVES sweet potato's and has them almost every night with her meal. It is perfect for her, they are soft, sweet and really that is all she cares about. I started thinking about the rest of her diet, applesauce daily, oatmeal daily, banana daily, peanut butter, yogurt, geeze this kid has one of the best, most antioxidant diets around, plus she gets a vitamin suppliment that goes in a shake every morning. No wonder she never gets sick! Ok, except for that constant runny nose (she currently has a cold, but it never seems to get worse than that), but seriously, I am always told, get her a flu shot, kids "like her" get the flu and have bad consequences from it. Well the only time Lily ever got the flu was the year she got the flu shot. Her and I both got influenza B, when the shot was for A. But we were in the hospital (during her surgery) and it was flu season. But she was no worse than me and it ran it's course and nothing extreme happened. That was 4 years ago! She has been healthy as a horse. Never hospitalized for anything other than seizures.
Maybe it is because of her diet. I think it being by mouth makes a big difference as well. Now of course she will be struck with the bubonic plague since God is funny that way, he doesn't like the words always or never.
I have to say though, I kind of feel proud. I mean, when you have a kid that has a condition you, as well as no one else have no control over, at least there is something I can do to keep her kicking and living a life with good quality.

Deep thoughts by Kim.

I hope you all had a Merry Christmas and have a safe and Happy New Year.

Wednesday, December 17, 2008

Updates

I still have not gotten the report from U of Chicago. I want to be able to put Lily's exact diagnosis on this blog so others can do searches on it, but I don't want to until I have the exact words.
The exact mutation/deletion.
We went to our geneticists appointment yesterday, well Lily's apt. and I was bummed to have gone empty handed. Of everyone, I mostly wanted her to be able to read the report. She said she would have suggested testing Lily for CDKL5 if I hadn't already said she had the diagnosis. She also said it is not a Rett Syndrome dx, just similar to and could be called Atypical Rett. I guess it is just easier to say rare gene mutation to strangers who ask.
Geneticists wants us to take her to see a GI since reflux is so common in these kids. I said she doesn't have it and she said, she might without us knowing. But then we think about all the times Lily cries out for what we think is no reason and think, OMG maybe she is having reflux.
We talked about her getting an EKG, I said she had several during the neuro study, but like most Dr.'s she wants to have one ran herself. She wants to rule out any arrhythmia's.
I really like this Dr. and can't believe how long it had been since we saw her. I just got so discouraged with not finding answers, I took a long break. She understood and if I don't say so myself, she seemed impressed with my knowledge. She also said she thinks I am doing so well keeping up she doesn't know if she could do as well. I said yeah but I don't quite know how to read the medical journals I stumble across, so I think my willingness to learn teamed with her knowledge, we will know everything there is to know. :)
She was also annoyed with why our Neuro wouldn't run the test and when I defended him to say his speciality is epilepsy she said he needs to know a dx b/c there is a lot to different disorders and what AED's work better for each situation etc. Anyway she was mad. I was smug.

On another note, I was totally annoyed last week when Lily and I had a meeting with her new case manager. She had me over look papers and sign. One paper said "child receives all nutrition via g-tube." I said "this isn't right." She said "When did that stop?" I said, "I guess when they cut the cord". Sigh. Nice to know how well we are looked after. Having Lily eat by mouth is a huge achievement for a child with her disabilities and I am very disappointed in the lack of interest they have in her. I get it, they are busy and under paid, but that is a huge thing to have wrong.

Tomorrow morning we have breakfast at Lily's school at 7:40am with the principal, because Lily is the "most improved" child in her class! Go Lily!

Tuesday, December 2, 2008

Another one hit...

"I know God will not give me anything I can't handle. I just wish that He didn't trust me so much. " Mother Theresa.

I don't know if it is me getting older, or that cancer is just getting nastier and nastier. I went from only having having Grandparents affected, to knowing young, vibrant, close people in my life being affected. This is so not about me, but I am just in shock to see such wonderful amazing people affected.
I got to know Kelly through the internet from when our girls were just little things. Her Janelle and Lily are so similar that we just though when one girl gets dx the other will have the same results. We met twice. Once on their turf, Cali (they drove down and met us in Coronado one summer) and then they came to AZ for The Angels spring training. We had a parents night out and had probably too much wine! :) But we stay in touch via blogs, facebook and the occasional text message. Kelly has so much on her plate with raising an awesome family, sweet Janelle, big brother Jack and being a loving wife as well as managing a career. She doesn't have time for Leukemia and now she is at UCLA for a month getting treated. You never know why people get hit and so hard, but check out her blog. She is keeping her sense of humor and positive attitude that has helped her kick everything else butt that has tried to get her down.
Send her a comment, a card, keep her company as she knocks this cancer on its ass and get back home before Christmas.
Love ya Kelly!

Thursday, November 20, 2008

UPDATE!!!

So I got a call this morning from Lily's pediatrician saying that he emailed the research Dr. since it had been 3 weeks and she said she had the results and will send him a report in a week or so. But he read me her findings and they said that Lily had a spontaneous mutation on her CDKL5, we don't know the name of the deletion or what Axon (or whatever it is) and I am praying it will be on her report when that gets sent, which Ped says he will forward on to me, but Andrew nor I are a carrier of whatever this thing is! We had no mutations and so the chances of any more kids like Lily would be next to none. Of course there is no guarantee of anything, but hearing that we aren't carriers took the weight of the world off my shoulders. I have been so antsy these past few weeks. My attitude hasn't been awesome and I have been very snapy. I think carrying all the weight of "what if's" was really weighing me down. I feel so relieved. I do hope that the report will have more info on Lily. I would like to have a pinpoint on all this. A name. We are very close. We do now know for sure Lily has some sort of mutation on her CDKL5 and from there I am hoping to learn more. I am wondering if she will get the dx of Atypical Rett. I guess some more wait and see, but we waited 6 years right, I can be patient? Ha!
So I just wanted to share that. With this news I have opted to try a VBAC and my OB is totally on board. I have read just about everything I could get my hands on and I think the benefits out weigh the risks. I will not be able to be induced so I am praying to go into labor naturally (something I have never experienced before) and will have to wait some time for the epidural so to not slow down the labor process and try to eliminate the need of pitocin. The only reason I had an elected c-section with Andi was I was scared to death that a birth injury caused Lily's issues and I would not risk my child again. But I KNOW that was not the problem with Lily and I hated the whole process and the cold feeling of it all and of course the recovery. Yuck.
I still have 12 weeks left and I plan on reading more and finding out more and possibly taking another birthing class... it has been over 6 years! I want to have this baby naturally and I pray I get that chance!
Thanks for all your concern and prayers. I will continue to update when I get that report!

Lend a helping hand?

Lily has had the same nurse for over two years now. She has become a family member to us as she is in our home 4-5 days a week. She is willing to do 5 small shifts when most nurses wouldn't even think of it. She meets Lily off the bus, when the weather is nice they take walks and she feeds Lily dinner and gives her meds. She has been a very special person in all our lives and we all love her. Andi Jane tells her daily that she loves her and I am pretty sure the feeling is mutual. :)
She is like another Grandma to the girls and we feel pretty lucky to have her.

Recently her daughter had a baby girl, Kaiya, that needed open heart surgery and unfortunately she only lived two weeks. The family is having to pay a huge amount out of pocket to lay her to rest. I added a link to donate at the top right of my page to see if anyone would like to help out. I have also linked below to the families site so you can learn more about her.

Prayers to their family for peace and comfort.
Kaiya's Site

Wednesday, November 19, 2008

Still nada

Still sitting here on pins and needles. I'd say God is trying to teach me patience, but I think waiting 6 years for a dx is pretty much a test in patience in itself. I guess on the scale of things 6 years vs. 3 weeks I really shouldn't complain, but I am going batty here waiting.
Things are fine otherwise. Girls are good and healthy. Andi and I had a great time in Colorado, the weather was perfect and it was fun seeing my sister in law preggers. We are less than a week apart. So cool!
There isn't much else to report. I will update when we hear something. I have been on the phone and all I hear is "nothing yet."

Wednesday, November 12, 2008

Lily bug

Lily rode Ruby again without pads on Monday. I just can't believe how well she sits on the horse with no pads! It is incredible! She is such an amazing kid! She has really good days afterwards as well.
She is still having quite a few drops a day and the cluster of myoclonics. I am not sure what we'll do. I'm not adding a med, so I guess not much. She gets over it quick and like I have said a million times, we'll take those over GM's any day!
I really don't have much more to update. She is doing well, her nose is runny again, I should have never said anything. But otherwise she is eating great, pooping great (with no assistance, that is huge!) and sleeping great. And she is always adorable. :)
Andi Jane is doing well. She is growing like a weed and surpassing Lily at that age. I am shocked at how big our AJ is and wonder if she'll surpass me (5'11"). Everyone who meets her asks if she is 4 or 5. I think since she is so big and her vocabulary is so large people expect a little more from her than she has to offer. She is bright, but no where Kindergarten level and people talk to her like she should be. I am seeing my past in her future. Pants all too short. Being called bean pole and all the fun things kids can call the tallest girl in their class. At least she is a toughie and can stand up for herself better than I was able to. She is going to be a remarkable person, as long as we all survive her childhood years... that child is strong willed! But so fun to raise. She really is. I've never met another person like her and I think that is a good thing!
The baby is growing and growing! I need to get some new belly shots on flickr, I'll get around to it, promise. I see OB next week and I will get one more ultrasound since I ask for them. I really like to check head growth. I know it really isn't much of an indicator of anything, but I feel better to see the brain and see it growing.
It has been a week since I got the email saying 1-2 weeks so I am praying we will have no more than a week to wait for our results. I really, really want to see these results.
Daddy and Lily are going to Greer this weekend and Andi and I are going to Colorado! It might be a bit cold, but that is ok! I'd like to break in my new Uggs and I can't do it here that is for sure.

Tuesday, November 4, 2008

Small Update

So last week I emailed the labs at University of Chicago and a sweet girl there said she will do her best to keep me informed. I just got an email from her that said this:

"We have found something in the CDKL5 gene in your daughter that may possibly be the cause of her problems. We are still conducting studies on you and your husband. When those are complete, in the next 1-2 weeks, we will issue a new report to your physician. I’m sorry for the delay, but we should have some news for you soon"

So that is where we are at. I guess Lily's issues are within the CDKL5 gene and we just don't know what they found. Looks like we have another week or two to hear about Andrew and myself. Just goes to show, it never hurts to ask.

Continued prayers would be appreciated as we wait for these results.

Go Lily, Go Lily

So yesterday we went to Hippo therapy (horse) and after grooming and getting out to the arena we put Lily on the horse and we both (PT and myself) thought something looked weird. Then PT says, "we forgot Lily's pads!" I said "wanna hold her and I'll run and get them" she said "no, let's see how she does". A little nervous (me), we started walking and wouldn't you know it, Lily stayed on the entire time, over 30 minutes! I felt like Lily needed a seat belt of some sort, she just looked so big on there with no support! But not only did she do it, she did it well. It was incredible! We realized Lily only seemed to need that support because she used it because she had it. We always knew that about Lily, if you sit behind her she will lean, if you don't she'll sit on her own. Same with the horse. She was super tired afterwards, but that was amazing! Next week I will bring the camera.
She is always amazing us. Maybe I will just let go of her while standing.... just kidding.

Friday, October 31, 2008

Couple videos

I just uploaded some videos and wanted to share.

The first is what dad does when I am gone. He is always looking for a short cut in everything and that even meant giving Lily her drink...




The second is really dark and I apologize, the only digital recorder I have is my sony cybershot camera so if the room is poorly lit, well so is the video. But you can see Lily clearly and this is her working with her PT. I wish you could see that she is sitting all by herself on our "coffee table". It takes her quite some time to do it but she does pass the ball back to Andi. You can tell she is trying very hard to get her hands to cooperate with the rest of her body.

Wednesday, October 29, 2008

Small update

My almost 18 year old niece still goes to see the Pediatrician when she is sick and it turns out, yes we go to the same place my sister has taken her kids for years. We have the same Ped.
My sister called and said she is taking my niece and do I have any questions that I want her to ask him. I said "yes please, ask him a time frame for the test please." So she did and he said it should take a week. I am hesitant to believe that. Tests never take a week, especially tests like this, but we'll see. She also said that I am concerned because I am pregnant and he said I don't think she needs to worry about that. Now I am not sure why he said that, but it was a little comforting to hear. So now on to waiting.
In regards to Lily. I understand completely that even if we get a name, or whatever, her care doesn't change. I get that. We still treat the seizures. We still do everything we have been doing from the beginning, but a name, a name changes everything! I was reading back Lily's site and I read that was the exact reason why Neuro refused that test, that a name wouldn't change anything. A name changes everything. A name takes the world that was resting on my shoulders and it is lifted. Yes Lily is still Lily, but there is a reason Lily is Lily. And I don't have to guess why. What's in a name they ask? Well in a name is relief. Comfort. Answers. A name isn't just a name Romeo, a name is huge. This changes everything.
I do not know if this gene mutation will be added to the Atypical Rett syndrome like the recently found mutation in CDKL5, that is all beyond me. I do know that on our lab papers sent out it says retest CDKL5 which is under the Atypical Rett's/Infantile Spasms column. But I know that is not what they are testing. They don't have a name yet for what they are testing.
This is all way over my pretty little head.
Our blood is in Chicago and that is where we stand as of now.
Thanks for all your comments here and facebook :) We appreciate all the prayers you all can muster!
Much love!

Tuesday, October 28, 2008

You better grab something to drink....

Wow! I got a life changing phone call yesterday.
Let me start from the top.
About 2 ½ years ago I found out about a test that tests the gene CDKL5 which if that has a mutation it is linked to atypical Rett’s syndrome. We have thought Lily has atypical Rett’s for a long time now. Mother of Rett’s girls think Lily has Rett’s. This mutation is linked with not only atypical Rett’s, but also infantile spasms and an early onset of seizures. Ding ding right? Plus looking at the characteristics of this mutation you’d say that is Lily. I was super excited when I found the information on this and called Lily’s neuro asking him to run this test. I am sure this is on Lily’s site, but I have no time to look for it. Well he basically said we aren’t looking for a diagnosis right now, we are trying to control seizures and we’ll look back into it later. I smiled and said ok, fine. I made an appointment with Lily’s personal, totally interested in my children, Pediatrician and showed him what I found and asked, ok maybe a little begging, if he would rx the script for this test and he said “sure.” Well after two months I was called with the report that there was no mutation on the CDKL5 and again we were at another dead end.
I hadn’t thought anything about this until I got an email asking if Lily had been tested for this just two weeks ago and that had me looking into her records and I found that test that said negative. I still thought though that Lily seems to have this disorder and I called the geneticist that we hadn’t seen in years to have her take another look at Lily and maybe run that test again, we can’t get in until Dec.16th. Then Friday of last week after work I got home and saw a message and it is from the girl’s pediatrician. He says he wants to talk to us about Lil and of course it is 5:30pm when I get that message. I had to sit on needles until 9am Monday to call and see what the heck he wanted. Lily hasn’t been in to see him in quite some time and I just couldn’t imagine what he wanted. So I call at 9am and 9:15am my phone rings. Wow this must be important! Dr. says remember when we ran that test two years ago checking CDKL5? I said “of course” he says “well the University of Chicago re-ran a test on Lily (with that old sample) and it came up positive, not for CDKL5, but for some unknown gene that has yet to be named.” I was in shock. A positive test result? A POSITIVE test result????? “So if it wasn’t positive for the CDKL5, what was it positive for? I don’t get it” and he explained to me that there isn’t a name yet, it is all very new and he described it to me in very simple language. He said imagine they were looking on Val Vista and Lindsey (two parallel road here in town) and they didn’t find anything, then later they went looking and found it on Gilbert rd (another parallel road next to the others in town). I’m still confused, but a positive result means a million things to me. It has been 6 years and 1 month we have been looking for answers, 6 years and 1 month of blood work, 3 spinal taps, 2 muscle biopsies, 1 skin biopsy, 3 different neuros, geneticists, developmental specialists, metabolic specialist and what?! A test I insisted on having ran by Lily’s regular Pediatrician is what is finally leading us to an answer?! Holy freaking crap! I can’t count the nights that I thought, was it Lily’s childbirth experience? Did I take too hot of baths while pregnant? Did I take antibiotics during a bad time? Was it my thyroid meds that caused this? I have thought of everything that I could have done to cause this to her and now I found out, it wasn’t anything I did. Can you imagine the relief that comes with that? I can’t explain it.
Granted they haven’t even named the gene yet, and Lily just so happens to be the first test to test positive, but we are on our way. We will know what this is and we will know fairly soon. We may have to be the pilgrims of this whole thing and that is ok. We can handle it!
But this isn’t without stress and well stress. Pediatrician told me on the phone that our next plan of action is to send them Lily’s blood again, they want to test DNA and RNA on her and they want to check Andrew and myself. Hence where the stress comes in, they want to see if Lily didn’t get this mutation from us. This stems off the X chromosome (?) (I am in way over my head here with all this, I barely could figure out what eye color our imaginary child would have in science with my blue eyed partner, by the way I am blue eyed as well) and so we need to see if first this is from us and if it isn’t from us then I guess they will see how this mutation came of in Lily. I think most of you are following me here. I am 6 months pregnant. I have to sit and wait to see if Andrew and I have any deformities that can cause this to happen to our children. We have been told by specialist by specialist the thought of something as rare as Lily happening again is next to none. And even though I have asked about genetic counseling time and time again we have been told with out Lily having a diagnosis they’d be going in blindly and have no idea what to test for. Fast forward. 6 years later. My blood and Andrew’s blood is on a first class flight to Chicago and we have to sit on nails while we wait for the results. I don’t even know how long tests like this should take. 2 weeks? 4? I know it took 2 months to hear back from the negative results we got 2 years ago. I don’t have 2 months. Well I do, but my heart doesn’t. And if Andrew and I do have some whatever I obviously know if doesn’t mean it will happen again for sure to our baby boy since Andi is as healthy as a horse, but then again if we do what are the odds of two healthy if we have something funky? Sigh.
The best case scenario is we have no mutations and it is all Lily, but then I feel bad that Lily has to be alone in this. I don’t want to wish that upon her, but I just don’t know how I would handle another seizing baby. Seriously.
I do know that God has his hands ALL over this. It is really hard to not believe in such a thing. I mean this is just all falling into place so amazingly. I just have to pray that the best outcome will happen and I ask the same from all of you. Lily is our special girl and we adore our special little one in a billion child, we just want her to be our only special blessing.
I may be a little consumed with this until we get an answer so who knows what I will write about in the meantime.
Prayers please! All the time! Thanks!

Friday, October 24, 2008

Updates

So Lily Bug is still having some drops and that cluster of myoclonic jerks. She only has that cluster once to twice a day and she smiles afterwards and they don't make her sleepy so I won't be too concerned, but I still don't like them. I don't like the drops either. I really thought she would have had them better under control with Clobazam. But the grand mals are still MIA and thank God for that. Although this isn't the best seizure control, it is good and maybe the best we will ever get so we'll just take it and try to relax.
Isn't it odd how you pray for one thing to happen and it does and then you want more. I guess we are all greedy in some ways. Please tell me I am not the only one. I just want my daughter to live a day seizure free. I feel like we are close and to be so close yet so far, it is a bit frustrating.
On a positive note, Lily had a cold that started about two weeks ago and I can say that her nose is not running anymore. For those of us who are close to Lily knows that when a cold comes on we are prepared for at least a month of nose wiping and the cold came and went this time. That is amazing for her and saves so many tears. Two things Lily can see coming a mile away, a brush and a tissue. She is not a fan of either!
We've got a busy weekend ahead of us, two birthday parties on Sat, the State Fair on Sunday and a birthday party for Grandpa Ted, Aunt Jenn, Uncle Bryan and cousin Cody all on Sunday night. October is a very busy month for our family. It is more expensive than Christmas!

Monday, October 20, 2008

Favorites

I know it is wrong to play favorites, but I have one. My favorite blog on this planet is from this sweet young woman who is going to make some kids the luckiest on this planet because she is their pediatrician. 6yearmed. Or some really lucky parents to get to have their most precious charms being looked after by some one like her. I linked to this recent post she made that I can't manage to read and re read without just loosing it. Please read the link before continuing.

I don't know if is it the way she describes mom's tired eyes. Because so many of us know those tired eyes. The eyes that spent way too many days looking at monitors. Looking at their child in a hospital gown. Spend too many hours looking at the clock. Eyes that cried more tears than they ever felt humanly possible. Eyes that were beyond a shadow of a doubt, exhausted.
Or is it the way she describes the way that the mom smelt her daughter head, her sweet, sweet bald head and maybe was remembering that smell she was born with. I know there is nothing like the smell of your child's head when they are freshly brand new in your arms. But when you are a mom you can't help but love to smell those heads years later, fresh out of a bath, or fresh with sweat after playing all day in the sun. Smelling and kissing heads is something us parents do over and over again and when I read that part I just have so much hurt. So much compassion for this mom kissing this sweet bald head.
Having a special needs child puts you in a different world. A different place to parent from. You see things from a different perspective and it seems like with a lot more compassion. Yet I still don't know what it is like to have a terminally ill child. To have a child that once was healthy and then became sick. Lily came as is. In my dreams before she was born she was something she is not, but she came here showed me all that she was about in less than a month and said take me or leave me. And I was on board. She is and will always be my angel girl and maybe down the road her condition may change, she may not be as healthy as she is today, but right now Lily is healthy. She is happy and she is my girl. I can't imagine her not being healthy. Not knowing if she will survive the night. Those are fears that overwhelm me and are incomprehensible so when I read that post about that mom and daughter. A mother daughter relationship that I know so well with a "neuro typical" daughter and my "special" one, to see it so open. So tender and so frightening. It just captures the entire "me" and I am sure the entire "yous".
Thanks Danielle for bringing such a tender heart to such an amazing profession.

And I know my web would read: BLESSED

Friday, October 17, 2008

Adios!!

I made plans with a dear group of friends that I get to see only a few times a year now. Our special kiddos all went to the best preschool on earth together and we used to have weekly meetings where we'd talk, laugh and cry together. It is a very special thing in your life when you can find others who can relate to you on issues that no one else can. I mean I have great friends whom I love, but most of them can't comprehend changing their 6 year olds diaper. Or having to spoon feed their every meal. Or manage seizures. This group can. Included is the kiddos teacher and therapist whom know our kids and worked with our kids and love our kids. We used to meet weekly when our kids were in prek, but now we have all moved on to the scary world of public elementary and have all gone into different districts our meetings have gone away.
So every 6 months or so we try to get together for something called game night. One mom always hosts in her gorgeous home and we stay up late, we laugh and play games. It is the most fun I have ever had sober. Not the most, but it really is good clean fun that is just can't be beat. Anyway, we have had tomorrow night planned for several weeks now so when Andrew says I'd really like to go to Greer this weekend, I said "hold up!" I said "you will not go unless you have child care planned for me". I am not missing game night and I am not going to scramble to find a sitter to come to our house because he got a bug up his butt. Well guess what! My mom said "well how about I go up too and Andrew brings the girls". I said "really??" Holy crap! What ever will I do? No husband, no kids for 2 days? Sign me up! So that is what is happening. Let me just add, Andrew normally is fully capable of taking the kids himself, but he is going up to help my dad work on the house and this isn't hanging up pictures housework, this is laying flooring, putting wood on the ceilings, painting, hard house work. So my mom is going to help with the kids and Andrew will help my dad. It really is an awesome thing to be happening..... to me! And of course the kids, they love it up there. I do too and want to go, but game night is happening and I AM GOING!

Wednesday, October 15, 2008

Updates

So it wasn't the Keppra stopping the weird jerky myoclonic cluster so we're taking her off of that. I am not sure what should be upped to stop them and for now I am not worrying. They don't bug her and last a total of maybe 10 seconds. I am not ready to up her meds more since she is technically on 4 right now. Keppra will be weaned in a few days. But still 3 is too much.
I have to be honest and feel bad for saying this but I was so ready to put Lily back on that school bus this morning! I think she had the same sentiments. It was a long 2.5 weeks! We never got to do much fun stuff while she was off since the weather hasn't cooled down much except this past weekend. Yesterday just the girls and I went to the Phoenix Zoo and that was a lot of fun. The weather was perfect and the girls were happy and on their best behavior. I was so grateful since I saw so many kids not on their best behavior and I had to thank the kids a million times for being so good.
Andi pulled the worst tantrum on me Sunday afternoon and I was at a loss of what to do. I ended up throwing away every toy she had in my car. It was drastic but worked. That really sucked though. She went wild on me. Hitting, kicking, etc. It was really sucky. I seriously hope that is not going to happen often or at all ever again... sigh.
Can I time warp this baby into staying a baby forever?????

Wednesday, October 8, 2008

Bye Bye Bye

So Monday was our last appointment. Sigh. It was a long one. Thank God my mom went to hang out with us. It was a long one. I first spent 2 hours getting pee from Lily Sunday night. 2 hours! I was an hour late to a family dinner at my sisters waiting for that child to pee. I have tried those things you stick on her, but every time I try she manages to pee everywhere but in the bag, the only sure way to get a sample is to sit her on the potty. I loaded her up on drinks, but since she only likes to pee in fresh diapers it was a long 2 hours.
But we got it. Andi slept over at my sisters Sunday night so that was nice not having to bring her along because I am not kidding we were there from 9am to noon. We sat with the nurse for 30 minutes, then saw the neuro for 15 minutes. He was funny. He just says what he thinks. Anyway, he wrote scripts for Clobazm (sp?) and Vigabitrine and our favorite pharmacy in Canada is able and willing to fill them both so that is the easiest route for us to go. The Keppra wean didn't go as planned. Apparently Keppra was preventing these myoclonic cluster creepy seizure so she is back up on that. On Topamax and Vigabitrine then we are supposed to add Clobazm, but neuro doesn't want her on that many just as I don't and we will go from there to see which one to wean. Sucks. I didn't realize Keppra was really helping. At least it is the one with the least side effects. I'd like to get her off Topamax if at all possible. It has been so long, I am not sure all it does. When we tried to wean it last time it wasn't an awesome thing, but that is because she was a mess anyway off Vigabitrine. So we should try again. I am just thinking out loud. For those of you with kids minus seizures I am sure none of this makes sense, but for those of you who do deal with those nasty monsters I am sure you understand the constant clutter in the brain of the best option, stop seizures but don't totally fog the brain. I hate seizures.
So anyway, after visiting RN and DR we had to go to the hospital for an EKG. We had to wait for what seemed forever to register her, then up to wait for the test. Then the test, then down to labs to give them the golden pee and to have her stuck twice for blood. Then I hugged the sweet RN goodbye, whom I got to know real well these past months, and we said SEE YA!
We went to visit my aunt who had neck surgery as well after all that, then to eat in the crowded cafeteria. Oh and I thought it was just on Grey's Anatomy that you see people on the elevator. Nope not the case. Lily's neuro got on the elevator with us and took it down. It was weird since we weren't in his office. Lily made herself known by happy screaming and we all laughed at her. Gotta love Lily knowing how to save an awkward situation.
That child loves to scream. She was happy screaming from 6am to 7am this morning. I was not ready to get up so we just let her yell and let us know she was up. She never cried, it was just hey I'm up, get me out. She is so silly.
Everyone who sees her lately says this "Wow! I never see her so alert and active!" Yeah, that is what not seizing all day does to her.
Otherwise on the home front, Lily doesn't go back to school until next Wed. Fall break is long! She is home with her nurse today and Friday. Thursday we will take Andi to gymnastics and that is the highlight of Andi's week. Plus her awesome gymnast cousin Skylar is out this week too and will go watch her tomorrow. Andi is so stoked! She loves her cousins!
My pregnancy is going well. I am really showing now! 22 weeks and counting. I can't imagine how big I will be in 18 more weeks. Andi says "you're as big as Jody so it is time to have the baby" my cousin Jody had her baby in July and I kept telling Andi I have to be as big as Jody before I have the baby and she thinks I am already there. Silly girl! Maybe I am as big as she was in July.. sigh.
Heartburn really kicked in last night for the first time. I had it much earlier with the girls and had hoped I was immune with this boy, but no such luck. Woke me right up and I had to take a zantac and sit upright for almost an hour last night before I could go back to sleep. Sigh. I hate heartburn! And neither of my girls had hair so that old wives tail sucks. I guess my Mexican food obsession will have to subside if I want to sleep these next 18 weeks.
Andi is good and as silly as always. Rarely naps and is always full of energy. She is so funny and keeps us all entertained daily.
So that was a long huge update. At least it is a good one!
If you are in need of a tax write off think about supporting our Zoo Walk for Autism Research I have a Paypal button at the top of the page. It is a fabulous cause and a day at the zoo with my girls supporting such a close to home cause really sounds like a great day to me.

Friday, October 3, 2008

My girl

My girl is still doing great! We have to go in on Monday for a "final" appointment for the study. :)
It is a long one though, EKG, Blood work and I have to bring in a dang urine sample. Don't get me started on those. Looks like we'll be on the potty for an hour Sunday night waiting for Lily to tinkle. Oh well. I am giving them the meds and in return I get an rx for the same med that we will now have to pay for. That is still if I decide to fill it. We are weaning Keppra and should be off by next week. (this is supervised by neuro) and she is still on Topamax but that may be the next to get the axe. We'll see. I think Vigabitrine works on it's own and if we do decide to fill the Clobazam then we will certainly give Topamax the axe. No mas three drugs for my girl.
I love her bright eyes we are seeing again. I love her smiles and filling her tummy with her favorite treats. She melts my heart.
Home to see her right now. Happy weekend.

Wednesday, October 1, 2008

First do no harm

So Lily is on modified year round school schedule. That means for every nine weeks they have 2 weeks off. Only two weeks is more like two and a half weeks plus two half days. Which in more clearer terms, really hard for someone who tries to work a few days a week. Since I am still living in a home with no computer plugged into the wall, long story and I am sure it will be a long time before that changes, I can only update when I am at work and until she is back in school I can only work two days a week, that is all the nursing hours I am allowed (15 a week), so updates will be less frequent for some time. How was that for a run on sentence? Grade away teachers!
So here is the update. Lily is doing absolutely fabulous! Hip Hip Hooray! She started a small dose of Vigabitrine/Sabril on Thursday night. Not much change on Friday. Then Sat. she had one seizure in the AM and I decided to bump up her dose to 250 mg 3x a day instead of 2x a day and Saturday afternoon she had a drop that just a day ago would have turned into a full blown GM seizure, but praise God it just stopped at the drop. I think her and I were both shocked and since we were at a party and not going to make a scene I whispered in my girls ear, "it's over baby girl. They are gone". I just knew it. I knew it 10 months ago. I knew it. I knew we should have never made that change. Now I can sit and kick myself in the butt over and over again, or I can say we tried something. We listened to the Dr. for the last time and we know, I knew this but now I KNOW that mom's gut trumps everything else. Trumps dad's gut (sorry hunny, I still love you) it for sure trumps Dr.'s ideas. Not that I will not listen, I will listen. I will take when I hear into consideration, but in the end the choice will be mine and it will be made after soul searching.
I was put on this earth to raise this child and I will not do that job poorly. Just because someone went to school for what 8 years plus all those years in training, that will never compare to being a child's mom who lives with that child on a daily basis. Again I am not discounting our Neuro. We still love him and will continue to see him. But no more will I jump aboard his crazy ideas. That study was only beneficial to one side and they can guinea pig on whomever they want, it just will never be my child again. I wish I had laid down the law months ago, I wish I wasn't so easily talked out of my gut opinion, but this was a learning experience and that is what life is made of. Rarely do you learn anything from pleasantries. We learn from hard. We learn from scary. We learn from frustration. I have learned a huge lesson. We will move forward. I have a call in about weaning Keppra since Lily was having up to 4 GM's a day during her wean from the study drug so we know that drug does nada for her. Since I haven't had a call back yet, I am doing it on my own. I still would like to get the study drug in a small dose to help with her drops, it is as easy as writing us a rx and sending it to a pharmacy in Canada, just like Vigabitrine. Something he could have done oh let's say 10 months ago, but really wanted a guinea pig instead... hummm don't doctors vow some little phrase?? What is it? Oh yeah "First do no harm." But anyway I haven't decided either way yet. Lily's posture is better off the drug. Lily's appetite is hugely back to normal. I can't find my little camera with the video recorder on it, but Lily is so funny right now. I was giving her those little Dryer Dibbs (yummy!) and I just held it in front of her mouth but not close enough to just put it in. She opens up and leans, I pull back and she leans forward more until she snatches it out of my hand. So there, vision problem? Not when there is ice cream involved. I will try to find that camera, but it may be a lost cause. I am afraid little sister has something to do with it.
So that is our update. I will be back on Friday to post again before I go on another hiatus.
Thanks for your prayers and concerns.

Wednesday, September 24, 2008

Quick update

So this wean has been a little tough. She had 4 seizures on Sat and on Sunday. She went down to 2 every day since Monday, but the bad part is she is refusing to eat. We think her 6 year molars could be coming in, but no one is brave enough to feel back there.
We stop study drug Friday. I know I said that I would do this slower, but the fact that she is not eating means I am barely getting half her meds in her anyway. I can't start Vigabitrine/Sabril until I have her off the study drug, so I am ready to start that and see if we can't just get back to where we were before all this sh!t started.
So I will update and let you all know. Lily had fall break for 2.5 freaking weeks this coming Monday so I will be home with her a lot. It is a good time to make the med changes. It is just hard when you do work.
Keep us in your prayers, please.

Friday, September 19, 2008

Updates

So we are going to wean study drug and then start Vig AFTER she is off study drug. Pray we don't go status. Sigh. This is a little frightening. He said it will be interesting to see if the study drug actually caused her GM's. Funny since I asked him at EVERY appointment if that is even possible and they pretty much laughed and said no. OMG if that is true I will be a very pissed lady. Not that it matters, what is done is done, but really I have been asking that very question from the start, because she was well off Vig for months and it wasn't until we went off placebo and went on the real deal that the GM's started. Anyway, we are in the weaning process right now. Dr. wants me to cut in half for a week then stop. Ha. I will do this in more like 2 weeks. Maybe 3. I realize he is in the hospital every day, but I really don't like to be there with my daughter as a patient.
So that is the plan. I will of course keep you all updated. I really appreciate all the comments and support you all give us. It means so much to have a little girl that is so very loved.

So let me give you all a Friday funny and post a video of little sis Andi Jane yesterday. We go to an outdoor mall here in AZ that has a water place for the kids to play in. Thursdays are Andi and my day to play. We spend so many days taking Lily to all her appointments I keep Thursday just for us. She is wearing her leotard from gymnastics and there was no music playing, but she just started dancing away and I had to record it. It is poor quality since it is from my phone, but you get the gist of what a crazy child we have! We wouldn't have her any other way!

Wednesday, September 17, 2008

Change is hard

Changes are in the air. Is it because it has been awhile in the waiting? No that can't be it. Is it fall? Who knows.
I still haven't gotten a plan for Lily's wean and add of the Vigibitrine so I put a call in the AM and it was much cheerier than my last, lets hope we will have a plan come tonight. She has had one a day since Monday, and I think ok maybe we can just deal with the one a day, but then I see the seizure and it is big. It is hard. It is intense. I see Lily's three year old sister holding her hand and telling her it is ok and that she loves her and I get mad. That is not how life is supposed to be! And even if it is one a day, it is one too many. I see how wiped out my baby girl is and it is not fair.
This morning our stupid puppy ran out and just went crazy, I couldn't get her back in, then when the bus pulled up I had to run and bring Lily out and while I am chasing the puppy, Lily goes into a seizure right there in the driveway. I forget the puppy and talk to her, Andi rubs her and when it is finally over she is spacey and tired and I have to put her on a school bus. It just breaks my heart. Then I can't get the dog to come to me and I just start crying. I know I am pregnant and I even cry watching The Hills, but it was too much. I swear if I had a pound near by I would have taken that dog, dropped her off and never looked back. I had never been so frustrated and overwhelmed.
I know Lily just slept the ride to school and she will be fine once she is there, but I can't, she can't, we can't have her go thru this anymore. I am so done.

Back to my point of changes. A few weeks ago I did some calling around looking to change from Lily's center based therapies (I take her to OT and ST) to in home therapy. I have been taking Lily to 4 therapies all outside of the house on Mondays and I am getting bigger and soon I will have an infant along with Lily and Andi and I just won't be able to keep up. Well God must have thought that was a good idea as well and opened the doors to not only an OT but a Speech Therapist that are able to come to our home, on the day I already have Lily out of school! Some people are on waiting lists for years! I did not think this would have happened so easily and I know this has God written all over it. But because these openings are open they start next week, so I had to let go of our OT and ST whom we all love and have been seeing for over 2 years. I had to call each of them today and apologize for this quick change. I know each kid they see puts food on their tables and I don't take that lightly. I wanted them to have a good heads up to be able to find someone to fill Lily's spot, but for my sake I had to take an opportunity that I know rarely happens. So anyway, I am sad to let them go. I am happy to have just made my life so much more simple. It is change. Change is scary. Change brings butterflies. Change, well is just that, it changes everything. But change can be good. This change is good.
Please keep us all in your prayers as we make this transition and as we make some med changes, I am praying that my gut is not wrong.

And maybe that someone steals our dog and gives her a good home.

Tuesday, September 16, 2008

And I finally did it!

After Lily having two to three grand mals this weekend (each day) after we upped her meds so much that she can barely stay awake. I called her neuro Monday AM and had to leave a message, Andrew said it was mean, but I didn't think so.
I got a call back with an apology and a promise that we can be off this study.
We gave it 9 months! 9! She had no grand mals when we decided to start this thing. Now she is having them and often. I'm done. I said I want her back on Vigabitrine, I know he doesn't think it is a cure all, but considering all we went thru before we tried it and then when we put her on it although it took some tweaking, her grand mals stopped. So I have to try it again and try it for good. Get her back to a high dose and go from there. She will have to be weaned off the study drug that has helped with her drops, but like I have said a million times, I take drops over grand mals any day! I know Lily agrees with me on that. So we just have to get the go ahead as to how we start the wean and start adding Vigabitrine. I know we have to go slow and I know there are side effects to Vigabitrine, but I know that grand mals are the worst thing to deal with and I have to see that they are stopped. Enough is enough.
Sigh.

Friday, September 12, 2008

Strange kid.

Lily had a neuro apt. on Monday and we upped the study drug and Keppra b/c she had been having anywhere from 3 to 4 grand mals a day and I was so frustrated when I came in.
So far this combo is keeping her just having one a day, but it is totally unpredictable and when it comes it is hard and wipes her out. Her drops are all but gone, but she is really tired on this very similar to Klonopin drug. I hate her napping all day. She went to bed last night at 6:30pm. And that wasn't following a seizure. She is just wiped out. So let's see wiped out from meds or from seizures. Isn't life so fair. I know I was told life isn't fair at a young age, but this is a little ridiculous.
Tuesday night Lily came down with a fever and by Wednesday AM it was over 103! No symptoms, no pain except for the uncomfortableness from a fever. I had to work and her nurse couldn't come early so I had to take her to work with me. But by 1pm her fever was gone, after Motrin, and never came back. Strange child. She just wanted to make things complicated and make her mom worry.
Tomorrow we are going to a party that one of the therapy companies is throwing. It should be pretty fun. I like free fun for the kids. :)
Have a nice weekend!

Oh I totally forgot to share, we are for sure, most indeed having a boy! There was no hiding his pride and joy. We even got the enjoyment to watch him play with his "toy"!

Wednesday, September 3, 2008

Lily's Birthday Post ... finally

August 28th 2002







Welcome to the world Princess LilyAnna Blu! Only after 29 hours of labor your beautiful little self came into the world, pink and crying. We had no idea what you had in store for us.





Only a few weeks later we found ourselves back into the hospital doing test on my baby girl that I had only heard of on Medical shows


And that first year was more of the same

2 months
7 months
Even though your first few years we spent aggressively searching for a diagnosis and a way to tame your uncontainable seizures, we still had fun!

First birthday Lily had Keto Cake!




At 11 months you were diagnosed with Infantile Spasms and at 13 months we treated you with what I think was one of the worst things we had to do to you. We gave you shots every day of the steroid ACTH. This picture explains how you felt and how your mommy and daddy felt. Grumpy!





But we still did fun things and tried to make your quality of life the best we could!


Trips to San Diego!





And Daddy setting up your red riding wagon just for you, and of course cute clothes!


Your second birthday in our new house was fun!


Your second year was very eventful. You were a flower girl! That was fun.


But your uncontrollable seizures had us in a tailspin. We took you to a specialist in San Diego and he ran lots of tests on you.



And the most heartbreaking decision we ever had to make, and one mommy is still unsure was the best thing for you and something we wish had never had to happen. You had to have brain surgery on Jan. 31st 2005. (unfortunately unsuccessful)


I cry still thinking about all you have had to go thru in your little life.

After San Diego and the surgery Mommy and Daddy decided to lay low on or diagnosis search and to accept seizures as a part of your life.

On March 17th 2005 you became the best big sister ever!



Then you turned 3 a few months later and as a strange turn of events, we finally found a great medication combo that helped control your seizures. Although never seizure free, life got much easier.



Then preschool at the best preschool ever! The Foundation for Blind Children! The bus came to our house and picked you up!!



You had the best teacher for two years and made some really good friends there (as well as did Mommy!)



You finished your first school year showing off your skills!



Here you are on your 4th birthday


And Easter that year


Disney World was a blast!!

You graduated from FBC in May 2007 and that was a little sad for all of us.


You had another Video EEG after a couple years


You started Kindergarten before you were even 5!


Your 5th birthday was fun at Peter Piper Pizza!



In October 2007 we went to San Diego with family friends and had a great time! You rode this roller coaster 3 times and kept asking for more!



Gorgeous girl!


This past year you started Hippo therapy, kept up with all your other therapies (OT, Speech, PT and Music), finished Kindergarten, started 1st grade and just had a super fun birthday party at Grandma Nancy's with all your friends and family and you celebrated your actual birthday with cupcakes in your class.


Even though nothing has been easy for you, you still try. You still smile and you still warm my entire soul with your just being you. I love you more than I could ever say with simple words. You are my first born beautiful daughter who made me the woman who I am today and I will forever be indebted to you and if I could ever teach you an eight of what you have taught me I can die a happy woman.

I love you my LilyAnna Blu! You and I are one heck of a team!


Tuesday, September 2, 2008

"I don't need another sister"

I was going to post about how frustrated I was with Lily's awful seizure filled weekend, but then last night this happened and I'd rather share this.
Andi asked if Lily could lay in her bed with her. We were in a sticky situation, we are dying for Andi to want to "play" with Lily, but Andi's bed has no rails and Lily could roll right off it. We decided to make a safe place for Lily on the bed and told Andi that she has to yell for us for any reason. That she has to be in charge with Lily in her room. She said she would.
We lie them both down, they are sharing a pillow and watching cartoons. Andrew and I were checking in on them every 5-10 minutes and all was well. Then all of a sudden we hear "MOM!" "MOM!" so I go running into Andi's room and Andi says "she's having a seizure!". So we comfort Lily during it and I thank Andi for being such a responsible sister and she says to me "mom, I don't want another sister. I love my sister. I know she can't walk, but that is ok. I love her."
I can honestly tell you that my heart melted and ran all though my body. My eyes welled up and I said again "thank you Andi for being such a great sister." Now this child can fight with me at times and act like she is sent to this planet to drive me nuts, but knowing that her heart is like that, none of that other stuff matters. She is a responsible 3 year old that I know will be a compassionate and wonderful, not to mention strong willed, woman.
I love being my kids mom.

Friday, August 29, 2008

Happy 6th Birthday LilyAnna Blu!

Happy Birthday my sweet LilyAnna Blu! I love you!
August 28th 2002 my girl came into this world and 6 years later I just can't believe all we have gone through.
I love you more than you could ever imagine and rocking you to sleep in the rocking chair last night had to be my highlight of the month! We never get to do that sort of stuff anymore and I am so glad we did.
I promise to post next week with pictures and all, but I have no computer at home right now and can only update from work and crazy I know, but at work I am working. Sigh.
Happy Labor Day weekend, we are off to Greer to cool off a bit.
Promise more next week.

Tuesday, August 26, 2008

Feeling a little better

Yesterdays post was written after being woken up at 4:50am and unable to go back to sleep. Then followed by an AM fight with Andi and taking Lily to 3 therapies by 11am. Then 2 seizures within hours apart, I was a little upset. She ended up having 3 seizures total yesterday which is upsetting, but we all took a long nap and I went to my yoga class last night and I feel refreshed. Plus I got about 9 hours of sleep last night, so yeah, I'll take those reigns back.
Yes I have those days where I want to be told what to do and just follow, but that isn't how epilepsy works. It is numerous medications and a lot of gut reactions and interestingly enough a lot of parental advice goes into what the neuro decides. At least in our case and at times I want to walk in the office blindly and let them tell me what to do, but I know too much and unfortunately our neuro knows I know too much and he relies on me with every decision.
Maybe it is time to try keto again. Ugh. I don't know. I hate keto. I hate not feeding Lily what she loves, but I do remember she did do pretty good on it. Not perfect for sure. It was never a cure all for us, but it has been many years. I guess whatever we decide we better do it soon since I need to have this thing flowing smoothly before a new member boards this family plane.
I don't know. Send some prayers this way. Pray for wisdom for me and for Lily's neuro that we make the right decision regarding seizure control.
Have I mentioned I hate seizures? Not today at least, right?

Monday, August 25, 2008

Up, Down, Up, Down

Sigh... so Lily has had two seizures today and it is just a little before noon. These are the hard ones that wipe her out. She had one after horse therapy and then just a minute ago before lunch. We have to leave in 30 minutes to go to Music and I am afraid she will be so wiped out I won't be able to feed her before our long car trip to Phoenix. Ugh. She seems to do well for awhile and then bad. Well never well, well, but not two big seizures in a day.
I don't know if we should try those changes again, but I am so afraid after her reaction to the Depakote last time to try it again. I am sure as all hell Keppra does nothing, but I don't want to wean without a plan and I am not sure I want Depakote part of the plan. Another problem is her drops are increasing. But if I up the study drug too much she seems to have worse GM's.
Last night Andrew was going off about not liking these new seizures and wanting change and I said "then you talk to the Dr., I'm tired". I wasn't trying to be rude, I am just tired. I am tired of seeing my baby seize every day too. I am tired of trying new things to see it back fire. I am tired of feeling so much guilt for ever starting this study. I just want to hand the reigns over to him and silently bow out. I just feel I am out of options.
I'm tired.
Sorry for being a party pooper I am just bummed.

Wednesday, August 20, 2008

Scratch those changes

So two days into Depakote I got a phone call from Lily's school saying she was sick. Bad diarrhea and dry heaving. No high fever and Lily's nurse was pretty sure it was a reaction to the new drug. Knowing we were leaving and having Grandma in town I decided to stop changes. Put Topamax back up and discontinue Depakote. That was a good idea because apparently Lily did very well while we were gone with no big seizures. I guess her drops were a little worse so we tweaked a little with the Topamax and study drug and I think we are at a good place. She seems to be doing better than she has been in a long while. Yesterday was the second day this school year she didn't have a seizure at school. That is awesome! Fingers crossed it stays nice and mellow around our home.
Playa Del Carmen was beautiful! The wedding was gorgeous! I have pictures on my Flickr account if you all want to check them out!
I also uploaded new pictures of Lily at Horse Therapy. I just can't get over how big she looks like on the horse. She is so in her element on Ruby the pony.
Big girl is having her party on Saturday! I cannot believe I will have a 6 year old! When did that happen??????
Thanks for all your prayers and concerns for Lily. Please continue to pray that she stays stable and maybe we start learning some new stuff without the darn seizures messing everything up. Have I ever mentioned I hate seizures?
Just wondering.

Tuesday, August 12, 2008

Changes

After our trip up north and all those seizures Lily bug had, we went to the Dr. demanding change. So he gave us change, then she stopped having so many and I delayed the change.
We started to wean Topamax as we were told, yet a lot slower than I was told. Like usual. :)
So while we are weaning the Topamax I am noticing, not more seizures, but a little bit more intensity in the seizures, so we added the Depakote... slowly I might add....so while we wean the one we will slowly add the other. I will update on how all that goes. As of lately though she is much more herself than she has been. She has been incredibly verbal, that child can scream! Especially when she is happy, the silly turkey. She is doing great in therapy these past two weeks. Last week she cried when we took her off Ruby the Horse! She is in a transition from her old Music therapist to a new one, we will greatly miss Rebecca! She has seen Lily since before her 2nd birthday. She has been the hugest constant in Lily's life, therapist wise, and we will really miss her. But her new therapist has worked at the center for awhile and has even seen Lily when Rebecca has been out so it is a good transition and I feel it will be a smooth process.
If only we could just knock back a couple 10-20 degrees Mondays would be so much easier.
Grandma Cheryl (Andrew's Mom) is coming tomorrow for 10 days! And Grandma Betty (Gma Cheyl's mom) is coming on Thursday for 10 days! And Papa Steve will be joining us next Wed as well!
We originally got Gma Cheryl a ticket to watch the girls while we got to a wedding in Cancun, then she invited Gma Betty and then they decided to have Papa Steve come for Lily's birthday party so it will be a lot of fun here for the next couple weeks!
Lily is having a party next Saturday the 23rd! It will be a lot of fun! Her actual day is the 28th but we didn't want to throw it Labor Day weekend when all the Grandparents would be gone, so it is a little early and a little smaller than usual. I decided to cut the guest list in half. We always have so many people that it is a little overwhelming for everyone. Lily included. And we are doing it at Grandma Nancy's big house and renting a huge inflatable slip and slide, it will be a blast!
So since we are off to Cancun in two days I will have to update when we return.
Pray all is well while we are gone. Cancun is a long way from home.

Wednesday, August 6, 2008

IEP

So bright and early this morning I met with Lily's teacher, the counselor, her OT and ST for Lily's IEP. It went as well as to be expected. Everyone is so nice and although I hear horror stories, I have yet to run into any. A lot was copied over from last year and it is so obvious how involved her teacher last year was and how much she knew Lily. It was like I wrote the report. Her new teacher seems very loving and well skilled and I think it will be a good year. Even better if we can get these seizures back under control.
This past weekend we went to Pine, AZ. It is about a 2 hour drive from our home straight north. Andrew had a couple friends and their girlfriends join us and we did some fresh water swimming at Fossil Creek which was fabulous! The water was a little too chilly for princess Lily so she sat and watched, I got some gorgeous pictures of her (check out my Flickr)! Andrew's friends were so awesome in helping getting Lily down and up from where we camped. It was not an easy endeavor and I was gracious that they were so willing to include Lily. But although the weather was cooler and the air was so much cleaner, Lily still had 4 seizures that Saturday and 3 that Sunday. Could be the elevation? I am not sure. But then we came home and she was back to one a day, which we can handle since the study drug has about all but cured her drop seizures. But since we went to see neuro on the heels of that weekend I asked for change, but I guess unless I see her go out of control again, I might just delay the change. This is what he proposed:
1. Weaning Topamax, a joint decision, she has been on that since 18 months old! I don't think it has ever done much for her, but because it is safe we haven't messed with it. So we will wean that first. He says cut it in half for 10 days then stop. I am far more conservative than him and will take about a month in getting her off.
Study drug: Stay the same, a nice low dose that seems to be warding off the drops
Keppra: Lower just a bit, but keep her on
Dilantin: Add. Sigh... I will if needed, but ugh, a new drug....well new old, she tried that one when she was itty bitty and it worked then it stopped working.

And to keep in mind trying again the Ketogenic diet. It has been years since we tried it and I suppose I'd be willing to give it another shot if it meant getting her off so many meds. I don't know... It is a lot of work and Lily is so motivated by sweets, I would hate to take away her one true love in life. We will see. I am praying that the answer will be easy for us to make. No answers seem to be easy, but maybe just maybe this one will be.

So that is our update for now. Oh I had an u/s on Friday checking for down syndrome and all looked well and they didn't see any signs of DS. But the tech said she was 95% certain that I was carrying a boy. I won't believe it until our 20 week appointment, but I was looking online at how factual determining the sex this early with the u/s we had and it was about 90% right at 13 weeks. So maybe we will get to find out all about snails and puppy dog tails.

Friday, August 1, 2008

Back to School

Lily Bug went back to school on Monday and so far things are going really well. I like her teacher and all the aides are the same, that is very comforting! They all know Lily.
Unfortunately Lily has had a seizure every day at school, but Wednesday. Yesterday, Thursday, she had two before school, one at school and then one last night. 4! Sigh... we upped the Keppra again, that usually helps for a few days, but we can't keep upping that every few days. We go in on Tueday for our monthly appointment so we will discuss options.
Monday Lily has her full day of therapy, 7am horse, 9am OT, 9:45 ST, 1pm Music therapy so she will miss school.
This weekend we're going up north a bit for the day and one night. I'm really excited, it is so beautiful up there, were going to a town called Pine. We're gonna swim in fresh water, my favorite thing! Have a picnic and show the kids there are fun things to do outside in the summer, you just have to drive a bit out of the valley to drop the temps!
I had an ultra sound today, it was an in depth one to check for Down syndrome and the baby looked good, measured a couple days ahead and the tech was 95% certain it is a boy! I still am waiting for the 20 week u/s to make me believe it, but she showed us something popping up on the little guy and it sure looked like a pee pee. My next ultrasound will be in probably 6 weeks or so, I will update for sure about that!
Happy Weekend!

Wednesday, July 23, 2008

One confusing little gal

Sunday Lily had 5 for sure seizures and we think maybe one more because of the way she passed out on us out of the clear blue sky. So probably 6 big seizures that knocked her out. Coincidentally I upped the study drug that AM. I lowered it back on Monday and called the Dr. fuming. No call back that day, and Lily only had one. Tuesday, Lily had three drops and nothing else. I kept the study drug down and will continue to keep it there and I refuse to ever up it again. Well lo and behold FINALLY I get a call back from a neuro other than our own and I said, "never mind" I explained everything and he said we can still increase Keppra if she has an increase in seizures. But I think, scratch, know that the study drug while yes it helps drops, it makes her GM's worse so I think if we stay on at a low dose, we should be ok.
Monday Lily was worn out, cried the whole time on the horse and therapies seemed like a bust so it was a bummer. She was just so tired and I don't blame the poor little bug. She finally seems to be feeling better and out of her haze. She is home with her nurse and I am on my way there and since I got no phone calls, I am assuming the day went well.
School starts on Monday and tomorrow we meet the new teacher.... please let her be good. I doubt she can hold a candle to Mrs. Jean and Mrs. Amy, but I am praying she can and she will! Wish us luck!
I will post on Friday with an update!
Check out Flickr, lots of new pictures! I don't have a ton of Lily bug unfortunately, but there are some cute ones!

Tuesday, July 22, 2008

Christmas in June

Very late in sharing these, but Lily's PT works for this awesome agency that does these great little parties for their families. This past June they had Christmas in June and we had a great time at an ice skating rink. It was such a nice escape to leave 110 degrees and walk into a building in the 50's!

Here are some fun pictures!

Here is what Andrew did all day, he would go as fast as he could and spin Lily! She LOVED it and then Andrew did it for all her friends! (if you click on the picture you get a super sized version, the one with me and Andi is fun to enlarge b/c the look on her face really says how much she loves to ice skate! lol)





Here is Andi and me trying our best... Andi was not much of a fan!


And here are a couple shots of our stay in Utah.... this is the loaner chair we were using that Lily was way too big for!


And this is how Lily slept (if you remember I put her mattress in between the boxsprings of her bed and mine) btw: she didn't start with her head down, she just managed to get down there






And lastly my sweet girl at my cousins shower this past weekend. Lily had such a great time she ate 3 little tea sandwiches (egg salad) and a whole piece of cake and this was AFTER she ate lunch!!!! Cute thing! And she hasn't lost a tooth, that is how wide her space is of her front teeth.... let's hope the big ones come a little closer!! :)



Wednesday, July 16, 2008

Cancel my nomination

Cancel that nomination you all had for me for Mother Of The Year. Due to the fancy wide world web I saw that we would be waiting a long time for the school bus next week. Lily starts school on Monday the 28th. Oops. I still don't know who her teacher is. I think I know after looking on the schools site, but I am not 100% sure. I have to figure out care for her for one more week. Her nurse can do two days, but she is going out of town so I'm going to call and see if they have anyone that can fill her spot. It's tough working with her. I hate for her to lie on my office floor. She is so big she rolls into everything and then cries. She needs to be at home, it is too boring at work.
Yesterday she had a good day. She had just one seizure and hardly any drops and her PT took her swimming for aqua therapy and Lily had the time of her life. PT said she was a different kid in the pool. Lily loves swimming! Especially in our bath water temp pool. No one else likes it that warm, but princess Lily finds it right to her liking.
So we are hoping things are evening out right now. One change at a time is the right thing to do.

Tuesday, July 15, 2008

Confusious says.....

I never put Lily back on V. I lowered the Keppra to slowly wean, I wasn't cool with the whole "just take her off", and I lowered her study drug. Well I guess she did pretty well when I was away this weekend, but Andrew "accidentally" gave her a full dose of Keppra the whole time I was gone. I came back and fed her Sunday night and lowered it again as well as the next AM and Monday she had 4 seizures. Not sure if it was the Keppra, who knows, but coincidentally Neuro called me yesterday, on his own, I didn't call him, and he said I tricked him and she was not supposed to be on the V while on the study and I very frankly said "I know she can't, and I didn't put her on, BUT at this point I don't care about the study and Lily's well being is far superior". He then kinda rambled and agreed, but said he cannot give her the study med, which we all agree is helping with the drops, if she is on V. So I said I understood, she is not on V, he was relieved. I said I am keeping her where she for now and even though she isn't perfect I am not making too many changes at once.
It is all just a big mess right now and I don't want to take one away and add another and lower another. We just have to do this all one step at a time and my step right now is lowering the study drug. Which I didn't tell them, but they can kick rocks, that is what I am trying right now.
So I don't have much to update. Yesterday she had 4 grand mals and after one GM she had a cluster of myoclonic jerks that really upset her.
School starts next week. I have no idea who the new teacher is yet and frankly I am not even sure what day school even starts. You would think you would get something in the mail, or something. Oh well, I do have a computer and I guess these days that is all we need.

Bette Midler was incredible and I recommend her to anyone thinking of going! Absolutely wonderful!

Wednesday, July 9, 2008

Small Update

Dr. says forget the study. He wants me to put her back on Vigabitrin. I am not ready. We are stopping Keppra. I want to lower the dose on the study drug (he wants her to stay on it, just not be in the study, for her drops). Lily did her best off V and just on Topamax and the low dose (or placebo) study drug. I am going to try that first. She was so alert and active on such a low dose of meds, I really don't like the idea of starting back up high dose of V. Of course if she is still seizing all day I will put her back on, but if I can avoid it I will. I love how Lily was in the spring. We were really making some progress and now we are starting from scratch. Yes she had a lot of drops, but that recovery is a few seconds, these GM's are an hour or so.
Wish us luck or pray for us during this transition.
I am going to Vegas with my mom, sister, and aunt this weekend to see Bette Midler. I am so excited. Although it is a bad time to leave Lily, if I can't trust her with her dad, who can I trust.
I am pretty sure seeing Bette will completely take me out of my rut I have been in. It is so hard when you feel sick, feel exhausted and are constantly worried about your kiddos.
I think lying at the pool with a fruity drink (non-alcoholic, of course) and seeing Bette is exactly what I need right now.
Keep us in your thoughts and prayers please.

Tuesday, July 8, 2008

ARGGGGHHHHHH!!!!!!!!!!!!!!!!!!!

That is me screaming! Did you hear it? I'll do it again! AARRRGGGGGGHHHHHHHHHHHHHH!
Sigh.....heavy sigh.................
I'm pissed. I'm so freaking pissed. I am so not in the mood to "put it lightly". I am so pissed I went against my instincts and went ahead with this damn study. I'm pissed.
I thought Lily was going into status on the 4th. We were up north, I didn't have her Diastat, idiot I know, but her summer school keeps it locked up and didn't put it in her back pack before she left and I didn't realize it until it was too late. Anyway, no Diastat and she goes into a seizure that lasted, I don't know 8 minutes. Full convulsions, hard core seizure. Ruined her day. She ended up having a crappy day. Slept and cried. It sucked. Two seizures on Friday (that included the bad one), Saturday none (upped the Keppra, thought maybe that was the trick), but ended up with two on Sunday, and 4 (!) yes 4 yesterday. This morning she already started out with one at 7am. What kind of bull is this. I so badly want to just let loose on someone, anyone. I call the neuro office and the nurse in on vacation.... he has been on vaca for 2 weeks, finally is back, yet I can't leave a message with his "person". I will tomorrow, and maybe that is better. Maybe I will have time to cool off.
I am so angry because in November during a normal neuro apt. I said no GM's but lots of drops. So neuro says she needs to try this med it will stop her drops, but in order to try it she has to be in a study and in order to be in the study she has to GO OFF THE DRUG THAT HAS KEPT HER GM FREE. I am yelling because it is nucking futs that he would even suggest this. Even though my gut said no, I said yes. He made me think this was the cure all, end all. I actually believed him. I knew better. I let them separate her brain in order to stop these seizures and that did not work. I knew that if the GM's came back there is no guarantee that going back on Vigabitrin would stop them again this time. We may be back in that black hole we were living in for those three years of uncontrolled seizures.
Lily is regressing, she never wants to walk anymore. She rarely sits for longer than 10 minutes anymore (when she was up to 30 min) and she sleeps half the day now to shake off the seizures. Exactly back where we were three years ago. Life was dark. Worrying was constant. And then we were finally enjoying life. We were happy. I was able to comfortably send Lily to school without having panic attacks of her having seizures all day long. I knew it wasn't guaranteed, nothing is, but I can't shake this feeling of how upset I am that I didn't go with my gut. I'm sick of Dr.'s telling me what is best for my child, sure you went to school for some odd years, but you know what I have been Lily's mom for almost 6 years. I know my child. I am so angry. So angry with them, the study people, the Dr. and myself. The Dr. and the study are only out for themselves, for this damn study, and myself for not trusting my gut. I have a gut for a reason and not using it is like blindly following. I'm done. I'm sick and boy am I ever pissed.
The thing is, it isn't like ok pull her off the study and go back to what she was on, that won't work. We have to start from scratch and see what works and how. And every change is done one at a time so who knows how long this will take and I am just sick over this. Just sick.
I'll update when I talk to the Dr.

Wednesday, July 2, 2008

Where do I begin?

Oh my oh my. What a mess we are in. Sigh. I don't know what happened, but Lily was no longer doing awesome on the combo I put her on. She started having tonic seizures where she just shakes and then screams and cries for a half hour later. Not a good thing. At least with the other GM she was having she would have it for a few seconds, then smile, then sleep. None of these are good and if I go on a tirade about my frustrations with this study I will waste energy so I am just going to stick to the facts.

I told study RN I put her on Vigabitrin. She said they need to see her ASAP. Lily's neuro is out of town so we saw his partner on Monday. He is a real nice guy, I remember he was on call when Lily had her video EEG last summer and he remembered us. He said we need to take her off the V for the study sake. I said only because she is doing worse I will do that. This past weekend Lily was throwing these fits of rage and screaming for reasons we had no clue about. She was miserable and I saw that V was not the answer like I (dr. mom) thought. So I told the Dr. I am willing to try something different. He thought Keppra would be the safest bet. We tried this years ago, I am certain it will not help, but who knows. It has been well over three years since trying different meds, she might react different this time. Only negative side effect of Keppra is it can cause behavior issues. I asked for an example and he said "Well a totally normal kid tried to kill his family with a knife". "Ok then" I said "What is an example of a kid like Lily having a behavioral issue?" and he said "Crying, you'll know". Phew.... although if Lily gets up out of her chair and walks over to me, even if it is to kill me, I will be a happy person.
So we had to wean the V which was easy she was only on it a week. We added the Keppra today and she is still on Topamax and the study drug. I am not a fan of three drugs and if the Keppra shows any improvement I am ready to show Topamax the door. She has been on that one FOREVER and it has never done much for her so it is time to hit the road. Of course we can't make too many changes at once, so that is in the future.

So as of right now we are having a rough patch. Lily is upset. Seizures are a mess and I am as confused as ever. I wish I never told the Dr. she had drop seizures, none of this would have ever happened. The drops are easy to deal with. Much easier than all this bull. Sigh.

Good news is we are getting out of dodge. Ugh! It is so hot and nasty here. We are going up to my parents place in Greer, AZ. We aren't staying at the house in the link, that is my dads rental property. We are staying with my parents in their house. The rental has a steep stair case that we can't do with Lily. But that is to show what a getaway it is. We love Greer! Oh and the little girl in pink is Andi roasting a marshmallow!

We wish you all a very happy and safe 4th. Send us some good vibes and prayers Lily only gets better from here.

Oh and one more thing.... Lily and Andi are going to be big sisters! We are having one more baby! Our due date is Feb. 8th, 2009! Can you believe it! Wow!

Friday, June 27, 2008

Back from SLC

So Lily and I headed to SLC on Sunday afternoon. We arrived at 7:30pm, got in a cab and got to the hospital after 8pm. We arrived hungry, but the cafeteria was closed. They did have a parent room and I found a yogurt, pudding and milk for Lily. I had a microwavable burrito and then we went to our room. It was pretty decent considering it was free. Two twin beds, a big handicapped bathroom, blinds that wouldn’t close and thank God a TV, with no remote, but there was a TV.
I knew Lily wouldn’t be able to sleep on a twin bed with no rails so I put her mattress in the middle of the bedspring of her bed and my bed; she slept really well and safe that way.
Monday we got up went to the cafeteria and ate. The staff there was very friendly; we ate well and headed over to wheelchair clinic. I met two very nice men, one in charge of wheelchairs and the other the PT. After over looking her chair they recommended that we kept her frame another year and we just “extreme makeover” it. They said if we go up in size it will be large and much heavier and will last her 5 years. I agreed that I like the weight of her frame while trying other chairs and agreed to fix up her chair. And by doing that we were able to leave by Wednesday instead of Friday.
So after a long and very throughout fitting we left Lily’s chair in their hands and borrowed a little Pixi chair far too small for her. The rest of the day was eating in the cafeteria, trying to go for a walk, but it was really hard since the hospital is on a steep hill. I knew I would never make it back up, so we went back to our room. They had a large play room, but there wasn’t much for Lily to do. I felt bad, but we spent a lot of time holed up in our room.
By late Tuesday afternoon we got her chair. It looked great. She actually looked small in it. Before she looked like the hulk in it. We have hopefully another year to go, unless she has a huge growth spurt, highly possible, but we should have another year to go in the chair. They really cleaned it up. It looks great.
We headed home Wednesday, the flight there went so smooth. I was nervous to travel alone with Lily, but everyone was so helpful, I had no problems. My luggage was there when we made it down to the baggage claim and it was just a smooth transaction. Unfortunately the way back wasn’t as smooth. I had helpful people and I was grateful, but the plane of late, baggage was late, etc. It was a crazier security situation in SLC and I was a little stressed, but we survived and her chair made it on and off the plane twice with no harm done. Andrew and Andi were waiting for us when we got off the plane that was fun!
Lily and I got a bad cold over there and we have been nursing our colds at home since. I don’t know where we got it, but with the 112 degrees outside and bad cold, life isn’t a blast.
Today Lily and I are home alone. Andi went to school, Andrew is at work and we are bumming. I am catching up on my blogging, laundry, and rest. It is nice. We may go into the pool a little later; it would probably do us some good to get outside.
So that was our trip.
Now about this study, I did something I wasn’t supposed to do, but you know what. I don’t care! I was wrong about thinking the increase was helping. She had about up to 3-4 grand mals (tonic/clonic) a day. She was having a seizure sleeping, waking and sleeping. Reminded me a whole lot of where we were before brain surgery and I AM NOT going down that road again. Lily needed to be back on Vigabitrine and I don’t give a flying F what anyone says about the study. Guess what; one day on Vigabitrine, the GM’s were gone. She needs that med. She should have never been taken off that med and I am mad we went that long screwing around with that other med. It made her seizures worse.
So I got a call today from the study RN. I was waiting until next week before calling her. I wasn’t in the mood to plead my case quite yet, but since she called, I spilled. She seemed a little frustrated, but I said sorry I am done watching her suffer, watch her regress in therapy and just done watching her seize when I knew she didn’t have to. I’m so glad we had a whole box of that left. Study RN said she’d look into some stuff and call me back. I don’t care; we fulfilled our agreement to this thing. The paperwork I signed says I can back out AT ANY TIME, so there. Done! If they can keep us with her taking Vigabitrine, fine, but I don’t care if they can’t. By the way, I wouldn’t have done that if I didn’t feel it was absolutely necessary. Her neuro said to up it twice and if that doesn’t work than we gave it a chance. He is now out of town now and I didn’t want to deal with one of his colleagues that don’t know Lily. I know what works and what doesn’t.
So I will let you know what happens from here. I feel like I completed my end of the bargain and Lily deserves more.
I have a tough day ahead tomorrow. I will help mourn my friends lost daughter. I am so sad for her loss and am not sure what to say. I just pray I can just be there and listen. It is just not fair. Send prayers to her for comfort.

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