Thursday, June 30, 2011

Leaky butts and other fun things

Monday morning I woke up to Andi in our bed, I asked her "did you pee" "yup" she replied. Ugh knowing that I now had to wash her sheets, the same sheet I just had washed the day before because Elmer the Guinea Pig pooped on them. Then I hear Oli whining a groggy whine, go into his room and the stench hits me first, "what the hell happened?" I lovingly ask and then I see vomit ALL OVER like all over. Rug, bed, crib, wall... like ALL OVER. Double to the ugh. More laundry. I mean my poor baby is sick. Plus I had to go to work that day. Text my niece who I was going to be dropping all 3 off at the movies with to say it was just Lily and Andi Jane and take Oli to work with me. He was fine all day. Nothing seemed to be wrong with him. Fluke I guess, until he woke up at 5am the next day with a fever. Ugh. I had to work again so I had to beg my niece, please say it's ok to watch him, she of course so kindly said it was ok. And Wednesday I was so looking forward to my day off and having a swim play date at a friend's yet that morning I went into his room I found him with poo leaked all over his sheets and still a fever. Ugh. And his butt is still leaky today, Thursday, leaving us another fun day home all day long. Did I mention the heat wave? It's supposed to hit 119 on Saturday. So I guess we don't have many options anyway regarding getting out.
Andrew took Andi Jane today to go to Greer. I work on Friday's so I will head up after 3pm tomorrow. Pending no leaky butts. Lily has me nervous, I gave her milk of magnesia yesterday to help her, which helps some, but nothing miraculous, yet today she had a diaper full and that makes me think the leaky butt is heading her way. She is not someone you want to have a leaky butt so I am praying that MOM worked, but honestly pretty much know that is not the case. A 4 hour drive is not safe with a leaky butt. If it isn't changed quickly rash sets in. Sigh. This is all my fault I said on Saturday "my kids have been so healthy lately" what an idiot.
Lily has only 2 appointments left to bump up her VNS and it will be at the highest setting the nurse practitioner can put it too. We'd then go see her Neuro, but he is in Oklahoma, AND the guy who was set to take Lily on is moving to Colorado. Good times. It appears Barrow's pediatric neuro dept is going away. I am taking this as a get out of jail free card. We now have every right to move on over to Phoenix Children's which I actually like better, I just pray the guy who we were told to get in with is good. I know Lily sees a lot of Dr's but Lily NEEDS a pediatric neurologist epileptologist. Not too specific. But when you have a kid with seizures like Lily's, especially a dx of lennox gastaut syndrome following her CDKL5 dx, you NEED an epileptologist.
BUT I do have good news. Lily has been doing great with the VNS! Her big seizures are typically less than one a week, more like every 8-9 days. She still has clusters of myoclonics and drops, but she has made it through her therapies with out any type of seizure. She can go hours with none. This is a huge accomplishment. Although she had one Sunday and then again on Wednesday, I am afraid she has leaky butt coming on which would make sense why she would have more seizure activity. She seems pretty quiet today so I am just sure it is coming. All and all though she is doing well. She is happier sans seizures, she is doing better in therapy and we are thrilled to see her doing so well. It seems like it has been a long time since we have seen her like this. And we are happy.
Looking forward to getting out of this ridiculous weather. I rarely complain about this weather. I am a true Arizona girl who would rather a couple hot as hell months and the rest of the year amazing, I even have a rule, if you praise the weather in the winter you are not allowed to curse it in the summer BUT 119? C'mon. Curses.

Monday, June 27, 2011

"He's the third"

We use the expression “he’s the third” in jest all the time. Like when he is on his 8th otterpop in an hour, “he’s the third”, when he shows up to a restaurant in a bright orange Halloween shirt that blinks (two sizes too big), camo shorts and boat shoes we say “he’s the third” but the more often I say it, I start to think, holy crap we do say that a lot. I do not in any way feel he is neglected; he is just… well the third. We are both the third child as well, so we have a huge soft spot for that place and quite frankly were not going to be satisfied until that spot in our family was fulfilled, and I could not have asked for a more perfect person to fill that spot!
But let me get back to my post, “the third” said by us all the time is a term of endearment, yet tinged with a sense of don’t judge me.
When I think about Lily in her first 2 years and it was just us, my goodness that kid was dressed so perfectly. Never did she ever not match, not even her p.j’s. And on top of her, ohh man I was in control, ok so not much has changed there, but Lily was our first. She was the most perfect thing that ever came to this world. And boy did we love her and treat her like she deserved. Yes she had health issues, yes we were heart broken over the way her life was unfolding before us, but we were determined to give her 100% of us.
Then when Andi Jane came it was like she was a first all over again in some ways. Her first words were sacred. Her first steps were followed and ohhhhh’d and ahhhh’d over. The camera followed her constantly and I even got enjoyment out of her first public melt down at Target. I took a picture to document it. Now her clothes weren’t matched as perfectly as Lily’s. And while she got all of Lily’s old clothes, she never wore them the same. She was/is anti-matching and in the beginning it bothered me, but these days I rather enjoy her and her willingness to be different.
When we added Andi Jane, I did feel a sense of loss with Lily. I felt guilty for not being able to give her every part of me like I had before Andi Jane, but when Andi was old enough to move, it was Lily who she moved to. It was Lily who she tried to feed when she could barely feed herself and in those moments I knew adding her was the best thing for Lily.
And here we come to “the third”, the kid we tried the hardest to conceive. The kid whose birth was nearly perfect, the kid who nursed perfectly and to this day the most handsome boy to ever walk this planet…. Just let me ok.
I did feel that same loss to Lily and the guilt in those first few months especially, but the same thing with Oliver as was with Andi, those kids love Lily and she loves them so I never doubt our bigger family even with a special needs child. I know they all benefit from each other and I quite frankly wouldn't know what to do with my self if I didn't have my chaos.
But as much as I love and adore him, I don’t have the time to be on top of him. I don’t have the energy to keep up with him, so yet he gets away with stuff. We laugh at things we never would have with Andi, and yes it probably isn’t “right” but I am writing this and sharing because I have a list of things that constitutes Oliver as the third and I am hoping others who are there, have been there can relate and even add to the list, so let’s go here are some of ours.
You know he/she is “the third” when:
1. you go get his shoe size fitted and you find out the ones he wore to the store were 2 sizes too small
2. his baby book is… where is it?
3. he jumps from the couch to the floor. all.the.time
4. he eats otterpops like he is in some kind of competition
5. you tell his sister to just let him bite you, it won’t hurt that bad
6. there are times when you realize he literally has no shoes that fit him
7. he needs a hair cut
8. he didn’t get a 2nd birthday party (I feel a little bad about that one)
9. we actually let him “cry it out” and to be honest he sleeps the best of all the kids
10. we find him “chooo choooing” his food to himself at dinner time.

Those are just to name a few, we’d love to see more and appreciate no calls to CPS. Thanks.

Sunday, June 26, 2011

Riding solo

Andrew has been out of town since Wednesday, I joked to him on the phone "you haven't been gone this long since I kicked you out" I paused and he laughed. Sometimes my jokes are "too soon" but he laughed. It sucks when your hubby is gone, and you don't want him to be. He's been working his tail off in Greer. My parents have a lot of property, including the town store they just took over, that needed a lot of work. Insurance was paying for it to get the smoke damage out so they decided since the place was cleaned out it was time to extreme make over it and that is where he has been, working with my family while I am holding down the fort here.
I know there are single mama's everywhere and I give you so much props. Especially if you are doing it alone with a special needs child. I had to go to the post office and had to load up the whole crew and it isn't like just jumping in the van and everyone buckling themselves in. But I am not going to complain, it is my life. It is just hot right now. 112 hot. Then I had a very looked forward shower I was going to go to and I had a sitter set to come and be with Lily and Oli and she didn't show. So I had about 10 minutes to get everyone ready and loaded up. I felt like the Clampets showing up, but luckily the mama is my best friend so I know she doesn't judge me as I show up and I have a clown car that kids just keep coming out from. Oh did I mention Andi had a play date that turned into a sleep over? Oh yeah that happened too.
Actually though the play date was the best plan ever! I am not kidding when I tell you I showered in a 4' x 3' shower with Andi and Oli. Andi was in my bed every night. Every time I went the bathroom I had Andi and Oli right there. I could have been blowing out the place and they would still be just right there. Just right there. But a play date meant Andi had someone to play with besides me and no one to fight with, poor Oli. I was starting to think it was an Andi Jane's world and we were just living in it, so the extra child actually really helped!
We now all need to get up and ready for church which I am dreading, WE have nursery today, yet WE are not here so I have nursery. There are typically 8-12 walkers whom I LOVE, it really is my favorite class to work in, but I need some reinforcements, if you have 2 criers you are so doomed! I'm sure they will find someone to help me, but I'm also sure I will be dripping sweat by 12:15pm.
He comes home tonight this evening, if all goes to plan. I sure hope all goes to plan.

Thursday, June 23, 2011

To share or not to share

I've written this thing over and over again. I can never get it right, I leave it hanging in the middle, never satisfied, never finished. Talking about something so personal is scary. Except for my belief in God, I rarely get much judgment on my parenting of Lily. But this is different. I think I'd rather say I'm an alcoholic than to share our story. But I believe in our story and I believe in change. I believe in grace and I believe in mercy. I believe in a God greater than anything and I believe he lets life happen so we can find these life truths.
I know some will wonder why I am willing to share this "out loud" in fact I can name those people off who will be mad at me for sharing this. So I weigh this very heavily. I go back and forth. I have wanted to hit publish post for awhile now. Why do I have this inner battle? Because it is not my desire to hurt anyone. It is my desire to heal and my desire to help others. AND to put our story out there in my own words. Straight from the horses mouths as so they say.
We renewed our vows on May 21st 2011. It was a beautiful occasion filled with lots of emotion and love. Our guest list was limited and that was hard to do, but due to money, space and what exactly what we were doing, it wasn't a big party, it was a ceremony solely for us to make a covenant with God to go forward in our marriage. A covenant we never made before and because of it we just about failed. Well we did fail, just thankful for extra credit.
On September 5th 2010 we were done. I was ready to say good bye to my husband and change the locks. And I told him so. I saw red, I hit, I cried, I threw things. "I hate you" "I hate you" "I hate you". I wanted him gone. And in my heart I believe that day we were done. The old us was over. The husband who lied and the wife who withdrew, the couple who functioned on a superficial level who had no idea what the other wanted or needed, the man who had an affair. They were over. Betrayal happened at it's deepest root and in the black and white world I had wished I lived in, it was over. I didn't want to hear him out. I didn't want to see his tears. I didn't care about his shame. I was done. And so he left. Figuring out how I would do this alone I was scared. But I was so angry. So bitter. I lashed out in very hurtful ways. I went after her, I went after him. I honestly don't remember much of anything that happened at that time. I know I had 3 kids I still had to get up and care for and days in bed crying were not an option. But auto-pilot was set and we just survived. I compare those days to those blank pages in New Moon (from the Twilight series) where it just states the month and blank pages. Everything was blank.
In those dark days I posted a verse on facebook, Psalm 34:18 "The LORD is close to the brokenhearted and saves those who are crushed in spirit." and I got a PM from a pastor from our previous church, who had since became an Anglican Priest, asking me if I was ok. I basically said no and could he reach out to my husband. He did and that is where our path took a different direction.
The next few weeks were life changing and my husband would call me to tell me what they had been talking about. On September 20th he called to tell me he accepted Christ in his life. Wow. I had never thought the day would happen. He was so raw. So different. So humble. Awhile later he asked me on a date and I went. It was a lovely dinner and we had a lot to talk about. A lot to cry about, a lot to discuss. My heart had really softened towards him and I thought this could maybe work.
It's taken marriage counseling, His continued meetings with the man (Bob) who took him under his wing. He didn't just lead him to the Lord and said goodbye and good luck, he has continued to stay and disciple him, support him, love him. Show him who God truly is. He even gets to a 6am bible study every Saturday morning at church. I started going to a support group, met up with Bob myself, read lots and lots of books, I pray, constantly sometimes it seems, devotions, journals and there are lots of triggers we had/have to work through. Lots of damage we had to repair. This was not swept under the rug, this was a large gaping wound that we had to stare at, examine and treat appropriately.
He took responsibility. He changed his life. And I mean true radical changes. His life had to change. His truths had to change. His thinking had to change and it did. It hasn't been easy, but he has done it. He has become a leader. A leader this family needed. And has become a man I truly respect, adore and love now more than ever before. Our love has matured by tenfold.
He has done the work of a man who truly was remorseful. Who truly wanted to save his family. A man who knows what it is to walk in shame and I can guarantee a man who will never walk that walk again.
For me this has been hard. Devastating to say the least. In this society I know there are black and white opinions on this issue. You cheat you go. If not you're weak. Those are the things that kept me hesitating in sharing. I know I even said that exact thing. But we all know our world is not black and white, it is all shades of grey. And it is filled with bright pinks and deep blues in the rainbows that will shine along the way, but only as long as you are willing to search for them. I myself had to find out who I really am. Where is my self worth and what issues are life and death for my soul. I have gone on my own journey with God and feel like after living my entire life as a Christian, I have finally at 32 found Jesus. Was this one of the most difficult trials we have ever been through, yes. Definitely. But has it been the most life changing for the best? Yes! Without truly digging inside of ourselves and coring out what needed to go, made the best parts of us shine brighter and we will move forward differently. Better.
So yes Saturday May 21st 2011 we celebrated the changes we have made and made a commitment that will be valued by our kids, and their kids, and their kids. We have built our house on the rock finally after our original house washed away on the sand. And maybe even the coolest part of this story is that on May 22nd 2011 he was baptized! He was baptized as a baby, but this was a proclamation of his faith now as an adult. He made a public commitment to live his life for God.
I share this story as a story of hope. A story of redemption. A story that says good can come of bad. A story that says God's love is full of grace and mercy. His love NEVER fails and his will is always for our best interest. I pray judgments are not placed against my husband, yes he made mistakes. Ones he has to live with the rest of his life. But he chose the honorable path. He choose his family instead of running and hiding. And it was easy for me to choose him when I knew what all he was willing to give up in order to make us survive this.

**there is more I'd like to share about moving on and so forth for others who have been there or are there, if anyone would like to reach me personally on this issue please contact me at knothdurft at gmail dot com. I will take time occasionally to share my heart, but I really first just wanted to share our story and the rest can if needed follow**

Sunday, June 19, 2011

This may be a bit rambly, but what else would you expect from me? I've been on the computer for 2 hours working on the IFCR newsletter which I enjoy when I finally get the time to get on the computer and work, but man time just slips away when you do things like that. I have no experience at all, but I think it is coming along quite nicely if I do say so myself :)
I have the USA pageant going on in the background and currently they are on the swimsuit competition. Did I mention I spent all day eating? We had my parents, my sister and her family and my brother and his friends over for swimming and bbq and man we ate ourselves silly. And now I am enjoying a glass of wine, blogging and watching 22 year olds in swimsuits. Hmmmm...
I need to throw in a Lily update before I go off the deep end... She is doing very well since the VNS got turned on. While she still has seizures they are spaced out by days (!) now and she is obviously much happier. It has been so nice to enjoy Lily in her best state. No uncontrollable crying spells, no crazy seizure day, she is really doing well. When she does have a seizure it does appear to be bigger and stronger but as long as they are spaced out to 1-2 a week I think that is a huge accomplishment! The summer has been treating us well so far, she is getting PT in the pool which is her favorite and she seems to be enjoying herself during all the activities we have done so far, movies, lots of swimming and trips out and about.
Today was a nice day, Father's Day. We had a great way to celebrate the dad's in my life. It was also my parents 40th anniversary. 40th! 40 years?! My mom married my dad at 18. Do you know what that means? She spent more than 2x her life with my dad then without. Andrew and I are coming up to our 10 year and I think wow we've come a long way, but thinking about all my parents went thru... holy crap! If I didn't get a good example of sticking it thru thick and thin then I don't know who did. I admire my parents for their commitment to their family and I know it wasn't easy and there were times as a kid I thought they'd be better apart, but thank God they persevered and I think they are truly blessed because of that commitment.
It makes me think about where we were 11 months ago. I was at a point where I didn't think I could stick it through. I felt depleted, finished and quite frankly unwilling to spend years unhappy in hopes for years later of happiness. But you know what, changes I never knew were possible happened and it is what made me reconfirm my relationship with Christ, seeing changes that I knew could only come from him. It just made me see how grey this world is. There is no black and white, it is all shades of grey. There are no exact formulas for life, especially for marriage and parenthood. What I do know is a constant and absolutely important part of our life is our relationship with God. Our beliefs are what make us who we are. Gotta throw some good old country jargon in .... "you got to stand for something or you'll fall for anything" I know cheese ball, but I can't tell you how true that rang for us. Andrew spent a lot of time not standing for anything and he fell. And he fell hard and he took me with him, but I am confident that it won't happen again.
We got married on the sand (literally) and we about washed away. We reconfirmed our marriage on the rocks and I feel certain that we will be celebrating our 40 year anniversary as well 30 years from now. And no it won't always be easy, but we have a foundation we never had before and that changes everything.
Evening gowns now and battery almost dead. I think I am just about dead tired too.... not even sure what this all says but I'm tired and rambling seems to be all I'm good at these days. I am still working on sharing our story, but it just never seems to come out exactly how I want it to. So for now I will just say good night.

Saturday, June 11, 2011

Heart of fire

I have no idea what my problem is lately. Getting online and updating is just not happening. I have written, yet not posted.
On Thursday I took Lily and Oli to neuro to bump up her VNS setting. That went well, we were told who our new neuro is. I am happy with the change, we've seen him several times. He actually said years ago he really thought Lily was a Rett girl and couldn't believe she had the negative diagnosis. It was actually the reason I started looking into CDKL5 again. We didn't see him though on Thursday, we won't until August 18th .. our 10th wedding anniversary! I'm about as certain as there are wild fires going on right now we won't be out of town at that time so why not celebrate going to the neuro. At that VNS appointment she said we could make this go faster by coming weekly instead of every two weeks. I gladly agreed, although it is a far drive and hellish with gas, we really want this VNS up to therapeutic level. I am fairly certain she is doing well because of it and seems so much happier. I really do think she is happier. Her crying spells have really gone down and we see lots more smiles. Also at that appointment she said even if we could come on Friday that would be ok, I said well we are actually going to be here for a cardio appointment so sure, we'll pop on by to see you as well. And she said great.
Andi Jane had been at VBS all week at church which was really nice. Two of my good friends were able to take her after VBS during the week and I was able to work. Bummed VBS is only a week!
Friday we went to Cardio at 8:50am (apt the day before was 8:30a!) They did an EKG .... back up... I mentioned her going to cardio a few months ago right? When I told her geneticists about the passing out in her stander it got us a free pass to see cardio! Yay! Anyway that appointment was finally yesterday. A very nice Dr. I was genuinely impressed. He said although he is pretty sure her EKG is normal for Lily, he wanted to make sure it was normal for Lily. I guess between the bumps there should be a wavy line and Lily's is flat. He said it could be totally fine, but would feel better seeing her EKG for 24 hours. So after being there over an hour (they bumped up VNS while there too) he sends us to the hospital for a .... crap I forget what it was called... holter. Yes, he sent us to the hospital to get a holter monitor. I'm a brain gal, don't know anything about the heart, just that it is fragile and we must handle it with care or it breaks.... hardy har har.
I was with Lily and Oli and Oli had practically bathed himself in the sink while I was talking to the dr. I figure quiet and wet beats dry and loud. I walk to the hospital, refusing to load up in the van just to unload just a few blocks away. So I am walking, holding a soaked boy, pushing my Lily through downtown hospital area. We wait in admitting for ONE HOUR! ONE HOUR! Then we sit with admitting for at least 20 minutes. I just thanked the Lord Oli is not Andi at 2 years old and we survived it. Everyone apparently finds Oli and his Justin Beiber impersonation very charming. Over and over again. Did I mention he can only say Baby, Baby, Baby Oh... da da da MINE... MINE...
Finally up to cardio where we WAIT again. Poor little old lady was going to have a heart attack telling Oli, no not in there, no don't do that. It isn't that I wasn't watching him, it was that she had a lot of rules I was unaware of.
FINALLY it took oh maybe 2 minutes to hook her up. Then we were out. They told us to take it off Saturday at noon. She is still in bed but I am curious to see how it all held up last night. She isn't what we'd call a sound sleeper so I'm not so sure. Andrew ace bandaged her up last night so she is probably ok. I just know mama does not have the patients to do that thing again so it better have stayed on. We take it off today and drop it off on Monday and unless she is on the verge of a cardiac arrest he said we won't hear from him for at least 2 weeks. There must be a note in her chart to tell mom how long something will take or else she will call daily until she gets those results. Smile.
I'll update I'm sure sometime in 2011... of course if it isn't normal I am sure I'll update sooner.
Did I mention her sleep study showed sleep apnea? We are waiting for appointment with pulmonologist now.
It's been a roller coaster of a week. Last weekend we were in Greer from Thursday to Sat. We were woken up Saturday at 1:30am to tell us there was a pre evacuation, my dad told us to hit the road at 4am. It pretty much sucked. We had to wake up the kids, load up and go. The sky was full of smoke. It was intense. No one slept on the way home...correction, none of the kids slept on the way home. Dad did. I drove because I apparently handle less sleep the best. Cheers.
My parents got evacuated on Tuesday and that was when we thought this thing is for real. I am not someone who stresses out for things unnecessarily. I choose my stress for real issues. I never thought those fires would ever really go thru Greer. Wednesday night we got conflicting reports, but the one I read said Greer was engulfed and I just cried. I cried like we lost someone, I thought our town in the mountains, our heaven on earth, our summer getaway was gone. We don't get the beach, but we get the mountains. On Thursday we heard only 5 houses were lost and my parents were all safe. I think by Friday we heard 22 were lost, but my parents were still safe. Now the winds are just insane and they are still in danger. I *think* the most damage has already happened, but with only 5% containment and crazy winds there really is no telling. Even if the houses hold up, who knows what we will be seeing up there. Burnt trees? It's just so sad. We've never been this close to such tragedy and it is hard just sitting, waiting, watching. We are praying for those who lost their homes and especially the other towns the fire has hit, will be hitting who don't have their summer home there, they have their home there. Their lives. It is devastating. Totally devastating. We pray for the fire fighters out there protecting what they can, they are doing a great job saving communities, this fire is just a beast though. It hops lines, the winds are just taking it and it is so dry right now. We pray for some rain, some calm winds. 100% containment. This Wallow fire can suck it.
Ok well that is what we all get when I lack in updating. Long posts. I have a newsletter for CDKL5 that I need to get out by July that I am really having a hard time kicking it into gear. But today is the day. I am getting to work. My juices are flowing.
Here are a few pictures of us enjoying Greer last Friday unknowing the evacuation was just hours away... and one of what we saw from my parents yard.

Wednesday, June 1, 2011

April showers bring May .. good byes?

I knew in April we'd have one good-bye to say in May. What I didn't know is we'd have 4 good-byes in May.
Yes I am still working on "The Story of Us" I've spent hours on it and still am not finished. Will share later.
But back to May good-byes.
Two caregivers whom we really loved left at the end of this month. It was for reasons out of our control and no hard feelings are shared by anyone at all. The exact opposite. Nothing but love for those two wonderful women who spent lots of time with our family, giving Lily their all. Ms. Sharon was like a Grandma to all the kids and they just loved her to death. Andi Jane says every day she wishes Sharon was still here. But we love Sharon and wish her nothing but the best moving on. But we can publicly say how much we will miss her right? And Ms. Julie wasn't with us as long, but she was good! She worked in a special needs classroom and incorporated all she knew with Lily at home. It was a sudden opportunity she couldn't refuse so we lost her, but deeply miss both women.
Lily's neuro is in Oklahoma. I don't know what else to say. I thought the tornado's would keep him here. But he is gonna be THE MAN there, so we can't wish him ill will, but he has been with us for 7 years. 7 years! He is the guy who says what do you think? What med do you think helped? What are your wishes? He worked WITH me, never against me (well except when he refused CDKL5 testing, but it was nice proving him wrong so that was ok), he was funny with British charm and no I didn't have a crush on him, I just really liked the guy and am really sad to have to change after all these years.
And I got a call yesterday from Lily's Music therapist that tomorrow will be her last day.

We're heading to Greer tomorrow after therapy and just going to enjoy the beautiful weather and all the charm that small town can give us.

God is in control. God is in control. God is in control. God is in control. God in is control.

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