Saturday, April 4, 2015

Time is Ticking Away.. Tick Tock

Packing, shopping, waking up at 5 am every morning to get work done so you can be gone for a week, loads of laundry so we can pack, preparing schedules for the kids while we are away sounds a whole lot like vacation. But it is not. We are preparing for the zombie apocalypse, oh I mean Lily’s surgery. The one where they cut all the way down her perfect skin and straighten her spine with rods and pins, bolts and metal in her precious untouched, unblemished body. The one where we are told pain management is number one priority and pain will be very prevalent. In our sweet girl, who knows little pain and doesn’t have the ability to say mama.. it’s at a 6, it’s an 8, God forbid, it’s a 10. We have to guess at how we help her going off instincts and her cues. Obviously something we’ve done for 12 years and I am fairly confident in, yet can you ever be 100% confident in something you never hear confirmation on?


I have been at peace. Until now. My mama heart is racing. My mama tummy is in knots and my mama brain is so full it is hard to remind myself that where my focus needs to lie. It seems the only things I am finding comfort in is Starbucks and Target. I am not kidding.
But thankfully this morning I found my verse. And I read my verse and I am reminded that I don’t have to rely on myself (nor Target or Starbucks) for the strength to get through this. I am coveted by a good God who loves Lily even more than we do. Hard to imagine but I know this is true. And I know he wants to see her in less in pain than we do. Hard to imagine but I know this is true. And he will see her through this. He will see me through this. He will see us all through this. He has given me the skills I need to be here at this place now. He has supplied us with incredible support of family and friends that hold us high and pray with us and cover us and I am finding myself coming down off the edge a little bit. This is my breathing in a bag. Writing, reading, breathing in him.
Philippians 4: 6-9  6 Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. 7 And the peace of God, which transcends all understanding,will guard your hearts and your minds in Christ Jesus.
8 Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things. 9 Whatever you have learned or received or heard from me, or seen in me—put it into practice. And the God of peace will be with you.
Thank you to those praying, supporting us via iheartlily.com and just asking how can we help. You are my heart just by being here. I may be absent, obnoxious, a space cake and all knowing all in the same moment and none of those things in the next, but you all love me thru it and thank you for continuing to do so.
I will keep you all posted on this. Probably mostly via facebook. But if you know me, you already knew that.

Thursday, March 19, 2015

To the One Who is Stuck in the Middle

Dear my Andi (stuck in the middle) Jane,

Hey there my girl! I’m writing this the day after you turned 10 (10?! When did that happen?) Some things really made me think a lot about you and they made me think about me as a mama and I felt like these feelings should be put on paper before they are just a vapor of thoughts that were here and then gone. Did you know you are quite amazing? Wonderful in fact!  I probably don’t tell you that nearly enough. But you are a one of a kind person who changed my life totally and completely.

On your birthday we sat and watched old movies. We laughed at what a cute silly baby you were. But I watched you watch the videos and watched you watch as we (your parents) would scan the camera from you to Lily and we’d say how beautiful Lily was and what a good girl she was and what a wonderful girl she was, then we would scan back to you and say things like what a silly girl you were, crazy girl, wild girl, even bad girl. And I don’t know what you were experiencing while watching, but I cringed. I cringed for you because you were doing all those things I had hoped for Lily to do and you were so advanced, so smart, so funny and I felt bad Lily couldn't do those things and I could see that I parented you both so differently. I saw it with my own eyes. You grew up in a shadow you never could get out from under. I knew it, but I didn't see it like I did on Tuesday as we watched those videos. I guess my brain said Andi is tough, Andi is independent and she didn't need me to coddle her like I felt Lily needed. Still needs. And I try not to live with regrets but I do wish I had done things differently for you at times. I wanted so badly to go back in time to the place of that video and pick you up, snuggle you and whisper to you that you are so good, so special to us, so smart, so beautiful, and so sweet. I loved on you as a baby, I nursed you until you were 2 (sorry, I know so embarrassing) so I am not saying you were neglected, you were loved, you were cuddled, and I don’t think I can put into words what I saw on the screen as I watched those movies, I just know it was different. I was a different mom to you both and I know that it would be impossible to not do that, I just wish I gave you more. And back then there wasn't much more of me to give, but I should have found it and gave it to you.

Oh my Andi. The thing about you though is you never showed any resentment towards Lily. You always have and always do for her. Love on her, care for her. You are the best sister Lily could ever have and while I know that, I had to watch those videos to really KNOW it. It isn't easy being you. And then we added a little brother to the mix and honey I understand it isn't fair for you a lot of the time.

When you asked if it could just be you and I on your birthday, no Lily, no Oliver, just you and I, I know you felt bad saying that, you told me so, but I am glad you were able to say it. If you want your special day spent shopping with your mama you can have that. And what a fun day that was! That’s allowed every once and awhile.

You were not given an easy place in this world. You have had to grow up faster than most kids your age. You see your parents put your sister’s needs before yours and you somehow “get it”.  It doesn't even seem fair for you to have to get it, but you do.

There may be days that just seem hard, that you just want to lie around and not talk to us and that’s OK. Every once in a while, that is OK, but thank you for not staying in those moods. Thank you for your smiles, your dances, your songs, and your awesome friends you chose. Andi Jane, you are a good person. I am not just saying that as your mom, you are a person I am happy to know and love to be around. Sometimes I push you to do things better and bug you to try harder but I hope you know it is because you are meant for awesome things. I don’t want you ever shorting yourself on all you can be.

I think we do better now, but there were many years I admit were not my best and you witnessed those years and you grew up as your parents grew up. We are all growing together. And I pray we are growing better and stronger and I am sorry for things and I am grateful for things and I am a better mother and better person because of you three kids who give me life.

God placed you in our lives when he did and made you exactly who you were meant to be. He knitted you in my womb… isn't that awesome?! He knows every hair on your head. I used to say this verse over and over for Lily and I believe it 100% for her BUT I believe it 100% for you too. And even that little brother of yours ;) You are exactly who God meant for you to be and you are exactly the person to have your place in this family and in this world.

We cherish you and celebrate you! As much as it saddens me for you to grow up, it also excites me seeing who you are becoming and I know as challenging as those first 10 years were at times, I know the next 10 will have many more and different challenges, I pray you always know God is walking side by side with you. Look to him in all your life choices he will never lead you astray. 

Happy 10th Birthday Andi Jane! Continue to shine his light! Thank you for staying true to yourself and always continue to do just that!





Monday, March 9, 2015

Jesus took that wheel a time or two

It’s a long drive from Phoenix back to home, luckily it’s almost all freeway and usually in the middle of the day so it isn't an awful drive, just a long one.  While I am always thankful for clear roads (strangely my patience seem to do better with those) I am even more thankful after tough appointments with Lily for them because driving and sobbing at 65 mph is not strongly recommended, especially not in heavy traffic.

I remember the first time this happened, Lily was 5 months old, I walked at a super human pace carrying a heavy Lily in her infant seat from the doctor office to the outdoor parking garage elevator trying to smile at the strangers for the eternal 30 second ride down. I then race to the car, buckled Lily in and sat in the driver’s seat, started the engine and dropped my face to my hands, loud sobs escaping as I hear the doctors words ring in my ears “yeah, she can’t see very well”. She was 5 months old. We were slaying the seizure beast and now this. This?! My heart ached in a way I wasn't sure how it would ever recover. I sucked in some air and put the car in reverse and drove home. And side note, found a kinder, way better pediatric ophthalmologist.

The second time I remember I was driving down the I-10 my ears rang as I heard his words over and over again. My precious girl at that time was now 3 year old and in her car seat sleeping while I frantically wiped at the hot tears rolling down my face “she’ll never walk, she doesn't need those braces”. I had walked into that appointment with a purpose and hope and he took that hope ripped it in shreds as casually as we would have talked about the weather on a Tuesday morning. I spent the rest of the day broken and angry. Also still determined and she got the braces and lost that Doctor.

The third time was many years later and was when our trusted and beloved neurologist recommended we meet with a palliative team just to make plans we hope to never need. She was soft spoken and tender hearted as she told me we should do these things now when things are good and minds and clear and we can pray those plans can stay in the cupboards and never be pulled out. No matter how tender she was, no matter how good hearted her intentions, no matter how responsible and real those things were for her to do as a professional, no matter if I knew these things as facts tucked back in the very furthest part of my brain, they never made it to my heart and so then when she said them out loud, well out loud changed everything. I was sucker punched, devastated, I was blubbering, sobbing and driving with shaking hands and all I can really know is I am so thankful Jesus took the wheel.
(I have to add not for literary sake, but for the sake of my friends and family reading this, this appointment was necessary, it just sucked. Because of that appointment we met a wonderful doctor whom I am glad will be with us if ever needed, she hooked us up with the Ryan House and we got a Disney Cruise from Make a Wish…. The appointment sucked. Hard. But that is the reality of this life. Sometimes things suck hard and we just have to move thru it. It is in the past. And God forbid we ever need those services, we are set. But I would also like to add I see in the future, Andrew, Lily and me driving around the US in an RV. She is in our retirement plan. Just thought I’d let you all know that)

And all this to lead up to telling you all about the last time I spent my drive home in tears and that was just this past November 7th 2014. This was a routine appointment where we would get her an X-Ray and check her spine. We've been doing this for many years; I’d venture to guess to say at least 5 years. Each appointment is the same, so many degrees we will keep watching her. She has been given braces but the scoliosis she has is neuro muscular and there is no stopping it. We have been told surgery is in her future but we were thinking more like age 14.  Except for in Colorado when we went to the CDKL5 clinic, they wanted her to have spinal surgery last spring, but we preferred to trust what our surgeons here thought and do that major of a surgery close to home. But the surgery is another little piece of fact tucked in my brain that never ever has swam down to my heart, until November 7th when Dr. White walked in and said “she’s over 50 degrees now. We need to schedule her surgery”.

I sat there. I stared at him. I waited for the mumbles coming out of his mouth to make sense. When they finally did it seemed like he was walking out the door before my mouth opened to talk. I sat there. The student Doc came back in to give me something and I asked for some literature on this surgery. I needed something in my hands, something to absorb in my brain. I had no idea what we just all talked about. She left and came back and handed me some papers.

That was 4 months ago. I have spent a lot of time researching, talking, praying and praying and praying. I have had my nearest and dearest been praying with me and I am feeling peace about it… now. I have a wonderful large network of amazing people whom can answer my questions because they have been there. On Wednesday (11th) I will tour the hospital with Lily and I will be able to speak with recovery nurses and there will be a mom who has been through it and she will be there to answer my questions (poor woman to have to answer all my questions). We are fortunate to be able to have the expertise of Phoenix Children’s Hospital just a teary bit of a drive down from our home. I am doing everything I can to make sure we are not blindsided this surgery. I have barely just started talking about it publicly and that is why I have been spending a week writing this post, I know it is time to share, but I guess I had been waiting for the right time that seemed to never come. So I am forcing it.

This is the last thing in the world I want Lily to go through. It is the last thing I earth I want to go through. It is something I would only speak in small increments about. I texted my friend “Lily is having spinal surgery. I don’t want to talk about it.”

But I have come a long way from then.

We are ready as we can possibly be. April 7th at 7am she will be having major spinal fusion surgery, approximately T2 to L2. She is expected to there a week if all goes well and full recovery will take about 3 months. She will finish out the school year at home. This surgery is necessary for her future health and we are preventing a lot of bad stuff (proper medical term) by doing the surgery now. I have come to a complete sense of peace at knowing this is the right thing to do. Am I still scared sick, totally, but we have faith in a God who has walked with us every single step of her journey and he isn't going anywhere now. I ask all of you to keep her and us in your prayers, as hard as it will be on Lily, Andrew and myself, I know Andi and Oliver will feel this deeply as well. Our family life will change during this surgery, recovery and healing time and they need to know how important they are as well.

I know there will be many other teary drives home in our future, but I am glad we have the people in our world who are here to soften that fall and help us pick up the pieces. God is good and we are in his strong and soft precious hands.



Tuesday, December 16, 2014

Tis the Season... SPOILER ALERT ***No Santa Believers should read this post***

There we were laying on her bed, her tears were flowing down her face as mine sat pooled in my eyes just one blink away from spilling over and she asks “why, why do you parents lie” and I calm my voice to give lame excuses as to why we parents lie and I hate it. I have always hated the lies we tell our kids in an effort to keep the “magic of Christmas alive”. I never liked the whole Santa getting our due credit, but since it was in the parenting handbook we received at the hospital, page 1456 “How to keep the magic of Christmas alive for your Child”, we followed the rules and lied to our kids.  Then we upped the ante and got Alex the Elf back in 2008. And that was cute, until Pintrest came and ruined that. Oh he can’t just go shelf to shelf he has to do pranks and be naughty and has to top himself every night when I have no creativity and all I want to do is go to sleep and not have to wait for them to be asleep to Google the best place to hide him and maybe sometimes it would be nice to fall asleep early and not have a panic attack at 3 AM remembering I forgot to move stupid Alex the elf that has a burnt head (I’d rather not talk about it) and maybe a little bit of a burnt back and how the kids can honestly believe this doll that is sold in every store we visit is real and yet have no issue throwing away a childhood doll right in the dumpster is way beyond me. But we do it. We lie, we fib, we wake up at 3 AM and move the burnt elf and make them do silly stuff and we grumble and post blogs, share blogs, post on our facebook about it and YET when the kids find out because you suck at lying and totally forgot that you did not make that build a bear, actually Santa did oops and you realize your 9 year old is just way too smart, she was the one who at 3 who pointed out at what a coincidence it is that Santa has the same wrapping paper as us (oops again) it’s time to give it up, answer her honestly, step up to the plate, lay on the bed with her crying, apologizing and promising her that she is in a better club, a club of big kids who help keep the “magic alive” for their siblings and when of course letting her know that when she is a mom she will understand. And I cry because I was caught in a lie and it feels gross. I cry because as annoying as the elf had become, I was grieving more over her realizing he wasn't real more than Santa because I knew how much she loved Alex. I cry because I realize all the effort we put up to lie to our kids and I cry because all I want from Christmas is to be a time of sweaters, boots, Christmas music, lights and Jesus. I want us to go out of way to tell the truth about Jesus and stop lying so much about Santa. I want the gifts we give to be a reminder of what we are celebrating and a reminder of the goodness of this holiday. Don’t get me wrong, I adore Christmas, I always have but the “magic” of it shouldn't be spoiled by lying to our kids.
So she found out the truth and promises to keep it a secret for all her friends and her little brother who still believes. She is the one who hides Alex now for me and it has been fun having her as my side kick. We are even getting creative again with hiding him … all just to be lying on the bed with Oliver in a few years crying after I ruin it for him too somehow. But we will continue to do it for him, but I am not gonna lie, I will be glad when the Santa days are behind us. I will miss them being little, but I sure won’t miss the lies.
Jesus is the reason for the season. Oh the cliche, the bumper sticker, but it is true. So this year I am making a better effort to read from our Advent book nightly. OK we skip some nights, but we read, we discuss stories, we pray for others. We find ourselves cuddled on the couch with no TV on, talking. And that is the truth about Christmas I want to keep going. It is a tradition I want our family to continue and remember and sure I want us all to look back and laugh about burnt headed Alex, but most importantly I want the kids to want to have those evenings with their own kids.
We may not have it all done right, but compared to years before where Christmas is over and I am left with whiplash feeling regretful and wishing to do better the next year… at least this year I am not wishing. We are doing.
 Merry Christmas from our family of 1/5 believers in Santa and 5/5 believers in the true reason for this Season! I realize 5/5 is 1 whole (Andi is in 4th grade, believe me I know all about fractions) but 5/5 made more sense then had I said 1 whole believers in the true reason for the season.
Peace



Friday, August 29, 2014

She's 12 (!)


"You know that feeling when your kid does something amazing or incredibly funny or super smart or just something that makes you so proud your heart feels like it will burst? That's what's it always feels like to be Lily's mom. It's been a good day. A very good day. Can't believe she is 12."

How is that chubby baby now 12 years old? Sometimes it seems like it's only been days and other times it feels like its been a lifetime of loving and raising 
Miss LilyAnna Blu.

Every birthday of hers I cry. But this year it was just a few tears and a short hiccup of breath and it was over. I didn't let myself get lost in the what might have beens or should have beens and just relished in the what it is. And it is good. She is good. We are good.
It was a great day. She got some loving on by all of us in the morning then she went to school.


 At about 2 pm I took Andi Jane and Oliver with me (they had a half day!) to go to her class and celebrate with all her classmates and teachers. She has a really good friend who helped blow out her candles!




At home she got a call from her cousins in South Dakota who wished her a happy day then we ate a homemade (a very cheesy) baked ziti with applesauce -minus applesauce for mom (yuck)- and we all enjoyed a favorite meal of Lily's with of course chocolate milk and cake.
It was nice to sit around the table with just our family and Lily's sweet caregiver of over 3 years now and  enjoy our time together. Grandma Cheryl got to be on face-time with us as we sang to Lily.
It was a great night! 


Did I mention last Saturday we had about 60 people in our home - she is well loved!


So that was why her actual day was a much quieter day. We have great friends and family and I've said it before, I'll say it again... we are so blessed. God is good!

There was once a day I would say why her? Why us? And today I can so proudly say, I'm so glad it was her. Thank you Jesus it was us. 





Wednesday, July 23, 2014

Regaining Focus!

OK can I just say being a mom is hard? Can I get an AMEN? We have to lift each other up, because I know so many of us are doing enough of knocking ourselves down. Cheers to all you mamas! You are AMAZING!
I just wanted to say we did have a weekend of family fun before school started. (Yes school started. July 21st. It was 111 degrees. Yay for year round school in Arizona) Although I will say 2 rooms next time, and maybe we will just take one kid at a time on vacation. Preferably Lily. I kid. I kid. I read last post. I totally kid. {but it would be more peaceful}
So we went on a little family staycation because Arizona Resorts know how to do a staycation!
We went to the JW Marriott at Desert Ridge and it was wonderful. We floated on the lazy river. We swam in the pools. We laid in lounge chairs. And although Lily had seizures (as always) we just let her sleep them off in the shade under cool towels. She really seemed at peace there and when she wasn't seizing or sleeping she was swimming and was so happy!
*Side note... we won a Kiefer float for her at conference (which I really wanted) and it was incredible for her all 3 times we took her swimming with it. Then we left it at the pool and never saw it again. But I am in contact with the resort who says they are doing all they can to search for it and if they can't find it they will buy us a new one! I'll keep you posted on that.*
The kids had such a wonderful time. Andi made a new friend, as always, Oliver just loved to swim and play catch. Andrew and I enjoyed an adult beverage and we took advantage of the kids eat free deal.
It really was like we were out of town. So fun.




Then school started. And sleeping in was over. Rushing had began. I knew it would be different with three now I had to get up and ready and really different because the past 5 years before Oliver seriously slept through it all. Andi pretty much gets herself ready and all I use to have to do was get Lily ready. Which is a lot of work as you can imagine as she is full care. But this year it was Lily's full care and pulling a sleepy Oliver out of bed and forcing a kid who doesn't like to eat breakfast to eat breakfast and get his sleepy head dressed and teeth brushed. And still full on getting Lily ready. The first day I was in tears and we waited outside for Lily's bus to come and then we were all going to walk the kids to school and I could see Oliver in his class... but Lily's bus didn't show in time and Andrew had to take them. I stood and cried and thought I am missing his first day of school. His first day of school! For the rest of his life he will never have his first official day of school again. And there I stood.. missing it. Proving once again they take second to Lily. Not wrong. But also not fair.

But here they were before

Oliver-Kindy, Lily-7th, Andi-4th

Second day someone was "sick" and didn't think he would make it to school. I called it second day jitters...

He's fine. Just dramatic.

Then I prayed the bus would make it in time. And when it didn't, I asked Andi Jane, "can you get him to school and to his class?" She said she has been waiting for this moment since we moved here. We live less than a block away and so there I stood and watched them as they left. Again.





So today dangit I was not going to miss them go again! So we all (Lily, Andi, Oliver, me) walked to school kissed those little nuggets goodbye and Lily and I walked back and then we still had 10 minutes of sitting and waiting {in peace} for the bus. I felt so much better. I knew that OK, this is our morning routine. We just need to get ready a little earlier and that is just how it will be. And we will really celebrate weekends.


Oh and just an Oliver update, he had a better 2nd day than first. He came home so happy to tell me about a book he made and even made a new friend with a "cool name". He is growing up so fast helping with chores around the house and even earning an allowance. He actually asks what else he can do to help. He voluntarily brought in the recycle bin on Tues. Bless his little heart! He seems a little more emotional than usual as last night after prayers he just sobbed like a drunken emotional sailor crying about everything from hoping none of his friends come over and ruin that book he made, to not being a "cool guy" to a very serious worry over a family friend (sweet Ellie Grace) who is battling cancer right now. We just said another prayer after he spilled all his worries onto me and then he slept like the little sweet prince he truly is.


Andi Jane is rocking 4th grade! Loves her teacher and the kids in her class. She asked me to put some Jamberry wraps on her and she was loving all the attention she was getting for her awesome nails! :) She has been helping me with Lily and Oliver and even pitching in with chores. Andi is not a chores person. So I am so glad she is finally realizing she needs to pitch in. Even if I had to make some incentives to get her to do so. She is a good girl and I can't believe she is in the 4th grade. Time really flies.


Jr. High is going much better than I anticipated! Teacher has called me everyday with updates and questions (asking questions is so good!) I have been informed how wonderful the paras are (from great sources) and look forward to meeting everyone on Monday when I go in to teach them about the Tobii. I had this overwhelming feeling of doom thinking of Jr. High, then I met the teacher, heard their are only 6 kids in the class and was told about the paras and I just felt relieved. I worry. A lot. And it seems like every time I do so God proves himself to me and says... SEE? We are always so covered by his love and peace. I am OK. I am feeling confident about this year.


So now I have three kids in school. Three lunches to pack. Three folders to check. Two I will need to reinforce homework with. And again... will really appreciate weekends.

Thursday, July 10, 2014

And Summer is Almost Over

Holy crap! I think I have whiplash. Is summer seriously almost over?
What?? Seems like here I am again coming here to update over summer starting.. at least I made it before Christmas.
I lay in bed and write the best blogs. Like seriously share worthy. Then I wake up and go to the computer and it is though I am grabbing those words, but I can only grasp a couple letters at a time and they never formulate like they did in my head.
It's been a good summer, but an almost over summer. Modified year round rocks all year, except for summer. I like them home and I am not kidding. There is no strict bedtime, no homework, and maybe it's impending doom of Jr. High that is shadowing me and my feelings, but I can't shake the melancholy. I feel like Oliver going into kindergarten is overshadowed by this awful sense of knowing ...Lily is going to Jr. High.
And once again I am reminded of how much our house/lives/world revolves around Lily. And it isn't bad. It isn't wrong. But sometime I realize, it isn't fair. But I also realize there isn't much I can do about it.
Since 2010 every summer has been focused on something for Lily. From conference to out of state clinic, to hospital stays, we spend our summers focus and money on CDKL5.
In Virginia on the last day of conference we sat in on the sibling panel and I cried. I was tired, yes, tears always overwhelm me when I am tired and also when I am PMSing, which I was also doing, but I think I would have been full of tears with lots of sleep and no extra hormones.
We stayed up and "socialized" every night in the hotel bar. Let me tell you, no one knows how to "socialize" like special needs parents. Can I get an Amen? We need it. So yes I was tired. But something struck me hard as I listened and laughed and cried at these kids who shared what it is like to have a sibling who doesn't speak, who acts differently, who has seizures, who (and most gut wrenching noted) may not always be around. My heart literally ached as I sat there. I thought of the lives our kids live and how not typical it is and how hard it can be. And I know the positives. I state them all the time, our kids are better for having Lily as their sister. But there are serious negatives as well. And they are real and they are ever present and they suck.
At conference I learned a lot, got a lot out of conference, we had a wonderful time, it was incredible meeting families and connecting and sharing and my heart was filled that long weekend, but it also broke. It broke over the connection we all had. It broke over sharing notes on seizures and wheelchairs and heart break. It broke over realizing the world we live in although so normal there among friends who understand, it is so not "normal" back at home. And there is a rawness of understanding the life our "typical" kids live.
Don't get me wrong, it absolutely was a time of hope and connection I can't put into words, but it was also a moment of conviction for my focus at home and a realization for my other kids who may be standing in a corner saying look at me. See me.
Although often it is a screaming over dramatized rendition of a stubbed toe, but tomato tomato. (you are supposed to read those differently, doesn't come across as well in writing).
The kids were great back at home with Grandma, our trips up north were cool, relaxing and filled with good times with great friends. And of course seizures never left our side... well except for when Lily was hooked up to an EEG for 30 hours. Oh then the seizures took a hike, but they were back when the cap came off. Seriously think there is something behind that. But we did get data without a big seizure. As it turns out and I really already knew this, but Lily has a mess of an EEG. Spikes all the time, has seizures that don't even look like seizures and this was all the while I would say she was having a wonderful day. I really wanted to see what her O2 and heart rate do during her big nasty seizures, but I guess it just wasn't meant to be. We will try another med to add to the list of many. And that's all that about that.
It's been a summer. Not too different from Christmas. A whir wind leaving me breathless and spinning. But also focused on claiming back my family. My focus and seriously.. and I mean it this time.. slow down mama. SLOW DOWN MAMA

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