April 1^st 2008:

No jokes going on here.

Yesterday we had yet another study day. But that was after, OT, Speech, Hippo (horse), and Music therapy. Music is just down the road from the hospital, but Lily had to fast 4 hours prior that that appointment, so I asked her Speech Therapist to give her some applesauce at 10am to hold her over until 3pm. Poor girl. This study… sigh.

I am starting to think about changing the name of study day to sh!tty day. I swear we can have this great day at therapies. Be feeling good and go to this study crap and just feel awful.

We show up, park in a different garage thinking I am smart knowing we have to see the neuro in a different building. Parking in the other garage causes us to walk through the hospital, out and into the building on the side that is Dr. Offices. We show up. Wait over 15 minutes, we are supposed to be taken right back. Get in the back, Lily is whining. Of course she is she is hungry. I thought we would do blood first, but no. We do the ECG first. Then we do vitals, weight check. When I push Lily over to the scale this woman who is there with her son, looks at Lily and asks me “How old is she?” I say “5.” And she looks at her and then me and shakes her head slowly no and gives me sad eyes. I just looked at her and hard and walked away. Don’t give me your pity. It was weird; it was awkward and totally rude. I could have easily said, “When is the last time you brushed your teeth?” and slowly shook my head and looked at her with eyes filled with pity. But I would never do that. That is rude.

So we go back to the office, Study nurse said that we don’t have to see Lily’s neuro in the other building, we can see someone else. Damnit! I parked all the way on the other side of the hospital, trying to be clever. Oh well, whatever. Get her in here soon. Lily is freaking starving. A tall, beautiful black woman with an island accent came in. She was kind and met my eyes and spoke TO Lily. I immediately liked her.

Study nurse is in a hurry and rushes her. She says ok, do a quick physical. Dr. says, “Ok, wait a minute.” Gets out her tool box, or whatever Dr.’s carry. Checks pupils, mumbles, seem concerned. She had never met Lily before. Measures her head. Study nurse says “Cranial ok?” Dr. quietly says, “No.” I can’t understand what they are saying, but study nurse says she wishes Lily’s neuro mentions this. She writes stuff down and then asks the Dr. “Would you say she is severely mentally retarded?” Dr. says, “Only if mom says so.” I say, “I only allow that term on paper work.”

I don’t think I could ever describe the feeling I felt when I read that on her records one day.

I felt like the nurse was in such a hurry that she didn’t take Lily’s feelings into effect. Like Lily wasn’t there. Or at least that Lily couldn’t understand her, we don’t know what Lily understands, but I like to give her the benefit of the doubt and not assume the worse. All of Lily’s therapists talk to Lily. Talk to me about Lily, while Lily is there and never assumes she can’t understand. I was overly annoyed. So the final question was to me, “Do you think she is better, same or worse than the beginning of this study?” I honestly say, “Worse.”

They say, “Well that is honest”, I said “Yup”. She started a new seizure since this stupid study and I won’t answer what they want to hear. The Dr. says, “Mom knows best”, signs something and is on her way. Then we are told to go to labs, FINALLY.

We get there; they again make us wait a good 10-15 minutes. The lady is training and she says, “These study kids are really hard, the wiggle, they move and they don’t understand”. God, she was lucky I was nice and held Lily’s legs, I was so temped to let Lily give her one hard kick to her stomach while she was sitting there drawing. Ugh. You would think in a medical setting people would be so much more, understanding, kind even, maybe?

Finally we are done. I am pissed, Lily is starving and we go outside and sit in the warm sun and I feed her a yogurt and Capri Sun before our long hour ride home. Several people walk by, some smiling, and some just staring. We have to walk through the hospital to get back to my car and I am comforted by the fact that everyone in the actual hospital is actually, nice. Ahhh… an older southern Dr. sees me with my hands full and asks if he can help. I politely decline his offer, but feel energized by his kindness. Walking through the hospital, Lily and I are like Mother Theresa and side kick. We get smiles, friendly eyes. No mean stares, no judgments. NO PITY. I don’t get what the difference between hospital and outside hospital, but I think I will always park on the other side of the office so we are forced to go through the hospital. It was the best thing for me after that awful study visit.

And you know what else? I was told I would get $35 per visit. I haven’t gotten a cent yet. We just completed our 7^th visit. That is $245. Hello….. would it hurt to make this a little comfortable for us? Oh yes? Oh ok.

I won’t end this on a crabby note. I wanted to praise once again several organizations that put together “Special Day for Special Kids.” We go every year and have a great time. Everything is free for families like us and it is a lot of fun. The girls had a great time. Lily was in love with the Coyotes Howler, he sat next to her and she kept reaching out and touching him. Lily never voluntarily touches ANYTHING. It was so cute.

I will try to upload some pictures into my Flickr account when I have a minute or two.

I am thinking of moving this site into a more blog friendly site. If I do, I will obviously have a link up and I won’t take this one down anytime soon.

I’ll let you all know. 

March 25th 2008:

I just wanted to let you all know I am going to just put pictures up on my flickr account and will put a link up here. I am running out of room and it is just too hard to pick and choose what to delete, keep and share. This way you can see all my favorite pictures!

I'm going to have a separate page now with the flickr link.

Everything here is still just cherries and roses. :)

March 21, 2008

My apologies! It has been a long time since I have updated!

Alright, let me try to catch up.

Lily started her two week long spring break on the 10^th. She had all her therapies on that Monday, then Tuesday the 11^th we got her AFO’s, SMO’s and SWASH brace. I will post the pictures. They are super cute! Leopard print, because she is such a diva. She is pretty good with the SWASH brace. I thought she might hate it, but she really doesn’t. It is too hard to explain so if you are curious just use that Google search you all know all too well and look it up. By Thursday of last week Grandma Cheryl came from South Dakota for Andi’s birthday and Andi got sick that night. She ran a high fever up until Wed. of this week. Poor thing. She was so sick during her birthday party and actual birthday.

We had a good party. We shared it with cousin Skylar and rented a jumpy thing and had a ton of people, Andi got a ton of gifts and passed out in my arms around 3pm. Poor thing, she was burning up by the end of the day. Sunday we just relaxed at home most of the day and Monday she stayed home with Grandma while I ran Lily to therapies. Monday the 17^th was her actual birthday, she was ok in the beginning of the day, but then just started running a super high fever. I took her to the Dr. who thought it’s the flu and she slept the rest of her birthday. By Wed. her fever was just low grade, but still today she is under the weather, crabby and not a lot of fun. She stayed with Aunt Jenn since I didn’t want her to go to daycare sick. She hasn’t been since last Tuesday the 11^th and she was supposed to start Pre School the week. Being the big three years old she is now.

Lily and I spent 6 hours at the hospital on Tuesday for this study. Sigh. It is such a pain in my butt! She had to fast and have no meds before her 10 am appointment. Then she had her blood drawn and an ECG. We had an hour break and I fed her some applesauce and a banana. Then back up for another ECG and blood drawl. Then we had a two hour break to get some lunch in a packed hospital cafeteria, pushing Lily and holding a tray trying thru a packed cafeteria and doing my best to spend less than $4, which was all my cash I had, is tough. I went over $4 and luckily they took debit. Lily and I ate and still had over an hour to wait.

We tried to go outside and hang out where others were eating. There was this little girl who was staring at Lily like she had spinach in her teeth and I started giving her dirty looks trying to get her to turn around and she just wasn’t budging. Then she started feeding pigeons. I HATE birds! They were all over the place and swooping right over my head. I had a freak out moment, and pushed Lily away. We went to the front of the hospital and sat for the rest of hour. It was beautiful outside and we enjoyed it.

Lily is so patient. So sweet. I just look at her on days like that an almost envy her. She just goes with the flow. I just love her so much.

Then the poor thing had her blood drawn once more and one more ECG.

Sigh.

All of that just to do it again on April 1^st. Every two weeks. This thing is so not worth my time.

Her drops are averaging about 15 a day. Plus the new little seizure that started. We have to see this thing through, since I committed to it and we are helping other children. But after this we can go on open study and neuro can dose her as he sees fit. That will be in June. If it is still not working I will then quit and start her back on Vigibritine, she has always done the best on that and I hate seeing her have so many seizures. I miss Vigbitrine. I am not sure why we did this. Oh yeah it is b/c her neuro swore this would help her, yet he didn’t mention the chance of her getting placebo, well until after we were all signed up. If she isn’t on placebo we will be in shock. Low dose is the only other thing it could be. Whatever. I will stop complaining.

We wish you all a very happy early Easter. Sure sneaked up on us didn’t it? Ours will be a little different this year. We are having a family get together at the park Saturday morning and then church Saturday night. Sunday my mom, sister, aunt and I are going to see the Broadway play The Color Purple. We totally didn’t plan this on, my mom got tickets, the best seats she could get were on Sunday the 23^rd and since Easter is never this early she didn’t think twice to book it that day. Well then she saw it was Easter and called to exchange and they refused to exchange them, so that is why Easter is all crazy this year. It is ok, we don’t have our old church to go to and it really isn’t the same. Now this year we will just wake up, give the girls their baskets, and have them look for eggs. Then mommy will get some away time, which after Lily’s long two week Spring Break and Andi being sick at home, a little break will be welcomed.

Have a good weekend.

March 6^th 2008:

So yesterday we got to spend another couple hours at the neuro’s office for this study. This is far more work than I had ever anticipated. Especially since we are pretty sure she is on placebo or low dose. Even neuro concurred, well speculated. No one knows what she is on, it is a blind study. He said when the study is done we can try this med for real, but he strongly encouraged, read: begged, us to stay on the study. We know we are helping other kids by doing this and that is my only motivation. We were told we are to get $35 each visit, but that has yet to be seen. We had our 5^th visit yesterday and this one included to dreaded urine sample. I got it, it only took 2 hours of Lily sitting on the potty Monday night, but we got it. A blood draw that required a 4 hour fast, which Lily was less than excited about, and I had Andi with us. After giving them her golden urine and they took her blood Andi was so sweet with Lily. She was rubbing her face while she was crying. She was saying “Ahh Sissy, its ok” and she wanted to hold Lily’s hand while we walked down the hallway and up the elevator, no matter who had to side step to us, over to the Neuro’s office.

While in the office with the Neuro, he doesn’t see her every visit but he had to on week 5, I tried to have a conversation with the poor bloody bloke, but it was awfully hard. Lily farted continuously for, and I am not exaggerating, at least 5 minutes (not one long one but one after the other). Really she did. Andi was getting very tired and she isn’t like those kids that get tired and sit on their moms lap and suck their thumb, she, kind of well does the opposite. She wanted me to blow my nose and loud. While I was trying to talk to the Dr. While Lily was farting continuously. She asked nicely once and I did it. I pretended to blow my nose, but no, pretend is not acceptable. So here I am trying to carry a serious conversation about Lily’s EEG and her seizures while Lily is farting and Andi is in my face saying, no screaming, BLOW YOUR NOSE MMMOOOOMMMMMMYYY!

The study nurse said, do you hear anything Dr. _ has said and I said “yes and repeated exactly what he said” she looked surprised. Actually she looked like all my teachers in H.S. that would pull that same crap on me. I can do three things and still hear you, ok. Now give me back my M.A.S.H. paper! (Sorry that is really only for you gals who went to High School in the 90’s).

Anyway, we completed week 5, barley. In two weeks we will go in ALL day for week 6’s visit. This one will include 3 blood draws, 3 ECG’s as well as other crap.

Sigh.

Sorry for complaining, it is just on top of 4 therapies on Monday’s; Tuesdays are becoming a huge pain in the butt as well.

Oh well…. A couple more months. A couple more months.

Good news! Lily finally gets good AFO’s, SMO’s and her SWASH brace on Tuesday the 11^th. I don’t even want to go into what they said about her AFO’s she has right now. They said they cast her foot into a deformity. They don’t support her properly and they are grossly a misfit. Makes me sad the quality, lack there of, care she got from the State services.

Anyway, new ones! And saucy ones at that! Leopard print! Can’t wait!

Spring Break starts Monday and so I will be spending a lot of time at home the next couple weeks. Lily has a 2.5 week break unlike most schools since she is in a modified year round school year.

Our roll in shower is done. It looks great. They did some half ass work on the other parts they said they would do, I think they took advantage of the fact Andrew is in construction, but oh well. We got our nice shower and we are waiting for her roll in bath chair. Pretty cool stuff!

I can't believe Andi Jane will be 3 in less than 2 weeks.... man......

Feb. 26th 2008:

Today is Andrew's 26th Birthday! His golden birthday as I remind him. I can't believe he has almost caught up with me. A few more years and he'll pass me up. :)

Lily is doing pretty well. She started a new type of seizure, I can't remember nor do I feel like looking at my last post to see if I mentioned it before. She has a drop then a cluster of myoclonic (it looks like she has bolts of electricity going thru her, then she is a little dazed and tired). Now these cannot be from her withdrawal from Vigabitrine, she has been off that since the end of November. It can only be from either a new med (?) or too much sugar in the placebo, I am be facetious here. All of her therapists, including the one I didn't tell, say something is different. Not hugely, but if I had to bet I would bet Lil Bug is on a low dose of this mystery med. We had to increase it this week and I am nervous. I felt like she was just adjusting to the new med and now we are adding to it, "or not" (finger quotes). I hear a high dose is wiping these kids out and I do not want that. I'd rather her have drops. I'd rather go back to her just on Topamax to be honest, but we have gotten our self into this thing, I will see it out a little while longer. I think I am just being negative b/c I am so sick and tired of driving to Phoenix. It is so incredibly inconvenient. Traffic is horrible; they are making a light rail system, great for the future, crappy for trying to get anywhere downtown. Plus with a new type of seizure, that really chops my hide. (Did I just say chops my hide?)

Lily is just doing so well lately; I really think we will have her taking steps within the next year I hate to screw around with her. 

Anyway, I am done complaining.

Although next week I have to take her out of school and fast her, more blood work and another urine sample (!) ugh.... at least we see neuro with this one and you better believe I will tell him about this new seizure. Sigh....

She had hippo therapy again on Monday and did much better than last week. She looks so peaceful and serene on the horse. I just love that. She hates grooming though. She really hates it. She likes the horse ride though. She had 4 drops on her 30 minute ride and was totally wiped out by the end. Yet after a quick lunch she was perky for her music therapist, so that was good.

Andi is doing well. She is overjoyed with the thought of her upcoming birthday party. She asks everyone to come and can't come up with one theme so it will be a hobnob of themes. I think it is a fun idea. Spiderman (her request) plates, princesses jumpy thing, hello kitty cake, etc....

Last night Andrew was being stern with her and said something I can't remember, but she looked at him and said "whatever". Sigh.... we have quite the future with her, don't we. Cute at 2, kick her in the butt at 12.

That is the update for now. I promise more on everything later.

February 20, 2008

Alright here is the latest run down.

We aren’t noticing much of a change in seizures. Lily is still having anywhere from 6-20 drop seizures in a day. Her appetite has decreased and some times she seems a bit “off”, but other times she is alert and happy. I am pretty sure she is on a very low dose. She could be on placebo still too. I can’t imagine it being a high or medium dose.

Monday was hectic (!) we went to OT at 9am, and because speech cancelled due to illness we had an extra 30 minutes to run home and get Lily’s back pack that I forgot and then we headed to the stables for hippo therapy. Lily did not love it like last time. She was much more wobbly than usual, hence why we think she is on some medication. She was upset that she had to help groom Ruby before she could ride her, because we all know Lily hates doing anything she doesn’t want to do. So after her wobbly, less than happy horse ride I fed her quickly in the car and we headed on our 45 minute drive to Music therapy. There she had a good time; she was happy and enjoyed group participation week. Then we went over to the hospital and she had to have her blood drawn, they were quick, fast and Lily didn’t even think about crying. Then we had an hour to kill, I ran to return an impulse buy at Old Navy and found my favorite Converse that I wore the crap out of at an outlet store and then we headed over to Orthotic Specialists. This place was INCREDIBLE! It was founded by a husband wife team who really know their stuff. Barb saw Lily and I had never had anyone take the time to look at her and see what she needs (ortho wise). She spent and hour with her and had Lily walk. She said Lily walks really well considering and she wants to help her walk better. She put an s.w.a.s.h. brace (google it) on Lily and although Lily wasn’t a huge fan of being constricted she walked amazing with it! It was incredible and I am so excited we are getting one. It was amazing to see the difference. They said kids with CVI (cortical visual impairment) can often see better when they aren’t concerned with keeping their body still and it is so true. Lily was so pissed while they were casting her for her AFO’s and SMO’s and when the one came off and Barb put the sock on her other foot to start casting that one Lily immediately looked right at that foot and at Barb. It was so spot on, I was just amazed. I actually caught myself teary eyed twice there, no one has ever given Lily the time like Barb did. I also have to say we have the most amazing, supportive PT and the company that she comes from. The owner of the therapy office came out to help talk and figure out what all Lily needs because it was easier for her to come out than our PT. She was right there with all the suggestions and directions. We met thru one of my dearest friend’s younger sister who is now a PT and is working with this company. She hooked us up and I know that wasn’t a chance encounter. It is amazing all the things that are being done because of these people. They first came out and said Lily can walk, she just needs the proper equipment and the right people working with her. Well it is happening!

Not to mention as we speak the girls bathroom is being changed into a handicapped accessible bathroom, they are making a roll in shower. It is so awesome; they are making a ramp to the front door as well. It is pretty amazing to see so much happening just because two people came into our lives that really care.

We should have the braces by mid March. I made her AFO’s a leopard print. Lily is my diva, we must show the world. As if her pink wheelchair isn’t telling enough.

I am just thrilled with everything going on right now.

The study however seems to be a huge pain in the butt, we have to go weekly for blood pressure check, blood every other week and ECG’s I think almost monthly. We got her new packet of meds yesterday morning and it looks like there was no increase so we shouldn’t see many changes. I was actually breathing a sigh of relief seeing no increase. I know her drops are frequent, but I am not sure they are worse than the side effects of these drugs. It is ridiculous to put kids on medications like these. The side effects are just insane: Nightmares, drowsy, sleeplessness, thoughts of suicide (!), speech problems, movement problems, not to mention what they can do to your kidneys and liver and this one can also effect the heart, hence all the ECG’s and blood pressure checks. Sigh…..

At least I know she is being watched well, much better than with any other med. I know when Lily was taking ACTH we never did half the things other people do on that. Lily should have had levels checked all the time. A nurse should have done it other than us. It is just ridiculous. Oh well, at least we are in good hands now.

It helps that I am older and more educated and not blind trusting as I used to.

Alright well I should pay you all for reading this, I feel like I am in therapy.

I will continue to update with this study and I can’t wait to show off our bathroom and new braces!

Feb. 5th 2008:

Well after a very long 24 hours we are back from SLC, UT.

Shriners was awesome! The Dr. was so nice! They took x-rays, they said Lily's spine has a slight curve, but they don't want to do a brace just yet. They think with therapy (esp horse) she will straighten herself right up. Her hips look great and now we will be able to get new AFO's and SMO's at a place here. Whatever insurance won't cover they will. So much nicer than our clinic here, I won't trash talk. I will just say Shriner's is lovely.

They think she is due for a new chair and the only way she can get the appropriate chair for her needs as well as ours is to do it thru them. It is a week long process, but most certainly worth it! They are scheduled about 3 months out, so we will be able to go back to Utah when it isn't snowing the whole time. Although it was pretty, I like the sun.

Traveling was pretty rough considering it was Super Bowl weekend and as you all know SB was here in AZ. Our flight was delayed 2 hours getting home yesterday, but we didn't know that until after they pre boarded us and put Lily's wheelchair under the plane. We were stuck. Ugh.

We made it home though, Andi had fun with her cousins and Aunt Jenn and Uncle Kevin.

We should be starting hippotherapy tomorrow, but after a huge down pour yesterday I am doubtful. But at least we still get PT 2x a week now; PT comes to our home if hippo is cancelled. Lily has forever needed PT 2x a week, but never had a therapist recommend it, nor try to.

I can't wait to get these new braces!!

Sorry for the short update I will post more later! 

January 30th 2008:

Well we were supposed to start hippo therapy (horse) tonight, but due to a rain filled Sunday we can't. It is ok, it is pretty chilly today and I can only imagine how cold it will be when the sun goes down. I know you all probably offer me no sympathy saying 50 degrees is cold, but dangit, it is cold to me! We should start next Wed. God willing.

We leave Sunday (Super Bowl Sunday) to go to SLC, UT. Our apt. is Monday the 4th at 9am. I will update when we get back with the suggestions they give us.

Everyone is fingers crossed healthy over here. And Lily is having an average of 12-15 drop seizures a day. We have to keep track, it is hard though when she is with 4 different therapists on Monday and at school all day and with her nurse in the evening. That is a lot of people in on the counting. February should be a busy month, Shriner's, new study drug, and I think 3 field trips! Fun stuff! Well some of it is.

Sunday night we sat front center row at Disney on Ice.

Andi wore her princess dress and was mesmerized! Lily loved the colors and the music. She was just staring! It was so cute. Andi said later that night that she wants to be a princess on skates and have people clap for her. Funny girl. Andrew said he will take her ice skating when Lily has her hippo therapy. It is only fair for Andi to do something fun in the meantime.

I will continue to keep you all updated with our happenings.

January 10th 2008:

So we got sidelined from our apt. on Tues. Good thing I am annoying or we would have showed up and had to go back home. It was a scheduling conflict and our apt. is now Friday 9:30am. Lily will have an EKG, blood work and urine sample done. Andrew and I will sign in blood our consent for this thing and Monday afternoon after 4 therapies she will have an EEG. Poor thing will be wiped out, which is good, she should sleep some of the test anyway. I know if I had 4 therapies and then had an EEG, it would say I was brain dead.

I am happy it is in the afternoon since that is when she cries. She is still doing it, but we seem to be able to get her out of her fits with food or busying her. Her first day back to school was yesterday and she did cry for them, but she got rocked in the rocking chair and calmed down. I joked on Lily's note that goes back and forth that they should be prepared for more cries if she knows she gets to get rocked in a rocking chair. That kid eats up cuddles like our puppy eats up my shoes! She will do anything to get them, hence why we think her cries are self motivation for bigger and better things other than her rocker. Oh our princess girl.

So besides waiting for the study to start, and our afternoons of crying, not much else is going on.

Well I walk the 1/2 marathon this Sunday, I appreciate the support I got for the walk! I haven't been walking more than 2 miles a walk, but hell, I've walked the mall for 3 hours. I'll be fine. I did have a cast change. My dear friend Kim doesn't feel up for the challenge so I am swapping her for my sister. She hasn't walked much either, but she works out daily. She'll be fine.

Next Thursday I am going to Kentucky with my mom, sister and aunt to a women's conference for our denomination. Well the denomination of the church that I used to go to before they closed their doors. Anyway, should be fun. We will be there until Monday. I haven't been away from the girls in over a year, except when Grandma took them to Greer this summer. I am looking forward to the break. My boobs won't hurt this trip like NYC!!! LOL (I was nursing when I went last time for anyone new to this site)

Anyway... Andi is doing good. She protests naps at daycare making her quite challenging in the early evenings. I am really having a hard time with this. I ask her what she does when everyone else is napping and she said she goes to the office. I asked her if she was in trouble and she said, no I color in there. Sigh, looks like she is rewarded for her bad behavior. Not like I blame them, she is awfully cute. Just not at 5pm with no nap. She surprises me daily with things she says. I am usually shocked and end up laughing. I didn't think it was cute when she told me she was going to beat me up though. Sigh....

I will update more when I know more.

OH wait!

Horse therapy! Starting Wed nights at 5:30pm at a stable near by! YEAH!! I can't wait for this!

Schriner's! We go Feb. 4th, we are flying in Feb. 3rd and home that next day after the apt. I do have a paypal button if anyone is interested in helping with the hotel and rental car. It will put us out a few hundred dollars, but I am really looking forward to seeing what they say and seeing what they can do for us! Their goal is to get kids walking and it would be amazing to see that one day for our Lily girl!

January 2nd 2008:

Am I really writing 2008? When did I start this website? 2003? 2004? Wow!!!

Well it has been an interesting a long end to 2007. I will say 2007 was a great year for all of us. It was especially the best year Lily has ever had. She has grown and changed so much! Her seizures have been the most controlled ever.

In 2008 she will be seen by Shriner's in Utah and she will start hippotherapy (horse). Should be great for her mobility!

She will also start this new med on this study soon!

We had a stressful last few days though. Lily started crying on Sunday for a period of over an hour. I left to see a movie and Andrew gave her a klonopin since she wouldn't stop and he thought she was having excessive myoclonics. She slept til the next day. She was fine all morning. We had some errands to run and everything was great. Then we went home, got Andi to sleep and I was going to lay down and all of a sudden Lily just started crying. I rocked her in the chair and she stopped crying. Then I had to get the laundry, put her in her rocker and she just cried and cried and cried. I picked her back up, but there was no stopping her. I put her on the floor. I put her in Andi's bed, furthest room from ours which was where Andi was sleeping and I did NOT want her woken up! Nothing helped Lily. I gave her Motrin. I lay with her. I smoothed her hair. I talked to her. Nothing helped. We went to my moms for a New Years Eve party and she was fine. She slept on Grandpas lap and she slept in my parent’s room the whole night. No problems. So we stayed until 10:30pm. Andi had a late nap and had a blast at the party. It was really fun.

The next day everything started out fine again, breakfast, quick trip to the mall and home for naps. Well Andi goes down, Andrew goes down and I was cleaning around the house and it all started again. She cried and cried and cried. She was ok in the rocking chair with me so I thought, she is ok. I put her down and she cried and cried. No stopping her. I decided to take her for a walk and she was happy. The entire walk, she was happy. We go home, the minute we walk thru the door, more tears. No lie. So we go for another walk. I need to get moving for my 1/2 marathon next Sunday anyway. We get home. Cries! Seriously! Seriously? I was getting frustrated. I was tired. So I thought we'll go to the grocery store. She was fine in the car. Then we stop to get gas and she cries. She is fine walking thru the store. We go home, get Andi and go to my sisters for dinner. She cries the whole way there. She cries the whole time at their house. I finally decide to take her to Urgent Care which was deserted, she got in right away. Checked her ears, checked her throat. Everything’s fine. She does have a cold, but she never acts like this with a cold. They decide to check her urine and we wait an hour for her to pee. Finally I request they use that cath thing and that sure made her pee. Her pee was fine. Sigh... they sent us home with no ideas. They said next time take her to the ER though, since they have limited testing there. She is home with the nurse, I have to send payroll today so I had to work. I will see how she does today and take her in tomorrow if this all keeps up. So frustrating when she can't tell us what is wrong.

I am hoping she is just sad that she has a cold and being on only one med maybe she really is feeling the full effects of the cold. Who knows? Keep her in your thoughts and prayers. Let's hope this isn't an omen for 08 and this will pass and 08 will be healthy! 

December 27th 2007:

Well I have been a little frustrated from time to time taking Lily off Vigabitrine, but all in all she is doing well.

We spent our Christmas in the White Mountains, Greer, AZ and we all experienced our first true white Christmas. My mom being native Arizonian and my dad living here since he was 13, after coming from South America it was a first for them as well. I guess a first for  everyone except Andrew who was desperately missing his old South Dakota white Christmas'.

Neither Lily nor Andi slept well up there so we were all overly exhausted and I could not wait to get home and sleep in my own bed last night. That is me, and Andrew, and Andi and the new puppy, Fiona we got. Sigh....

Lily cried a lot last night and I finally had to give her some klonopin to get her to relax. She is not a crier so of course she had me worried. She has been off Vigabitrine for 4 weeks come Saturday so it should be out of her system. She could possibly be getting her 6 year molars by the way she is drooling and munching on her fingers, but I don't feel much, although if I spend more than a second exploring I about loose my fingers so I try to put my fingers in her mouth as little as possible!

I do have to say I am pretty happy with the results of the wean. I can't believe that Lily is only on one med right now. She hasn't been on one med since this whole rollercoaster started over 5 years ago. She is so alert and "awake". She rarely even naps much anymore; she has always been a napper. She never napped on our 4 hour car ride, there or back! Crazy kid and the puppy wanted to sleep on her lap the whole way. I don't blame her though, Andi is a bit rough.

We go in Jan. the 8th to start everything for the study. That appointment is just for us, Andrew and me to fill out paperwork and such. Then hopefully the 10th she will have all her testing done that day. EEG, EKG, Blood work, etc. Then we have to journal her seizures for an entire month. Am I repeating myself? I think I have already said all this.

Anyway, we are getting closer to starting this study. Although I hate adding a new med, I know it is necessary. Lily has huge drops and jerks. I mean, I can't imagine what it feels like for her. It is like a huge electric shock thru her body and it happens often. That is why I am saying I have mix feelings about the wean. I am glad she has had few grand mals, but it is upsetting how big her atonics and myoclonics are. Poor bug. Life is never easy, but I can say this is the easiest it has been in 5 years.

Lily got a huge swing for her to play on outside. Daddy just has to build the swing set and now with a bum shoulder from snowboarding, I am hoping she will get to play with it by spring. It's too cold to play outside right now anyway; it is barely 50 degrees today! That is cold! Well, it is for us!

I hope you all had a very Merry Christmas and will have a happy New Year.

Mommy got spoiled and got a new camera for Christmas. I can't wait to share all the pictures I took this Christmas.

December 11th 2007:

So we have been crossing our fingers and all has been well with Lily. She is still a little overly emotional, but she is down to one med. She is probably feeling things she has never felt before. It is pretty exciting!

She is still recovering from a cold and her nose has been running since October, I swear it to be true. I think she must just have a cold from October til May. Sucks for all of us who care for her, but of course I am sure she really doesn't enjoy it too well.

We got some fabulous pictures takes this past weekend. Even though it was sprinkling with no sun, they look amazing! Andi was a stinker so we don't have many of her or with her, but Lily got some great ones as well as our family.

Our bus ride was pretty fun. A little too long, but fun. It rained the whole time. Man, this is one of the first Decembers it has really felt like Christmas is a coming in a long time!

I do want to ask for prayers for a family friend. I am not disclosing her name, but someone close to us was recently diagnosed with breast cancer. It is heartbreaking to see this happen to someone so young, so kind and so caring. I pray she caught it soon enough and will make a full recovery, but keep her in your prayers please.

Keep praying for Lily. I think she might be just fine off this med, but I am still holding my breath. So far so good though; this study may really be a good thing, if it ever comes around. There seems to be a lot of waiting.

Enjoy these last couple weeks leading up to Christmas. Remember what Christmas is all about and try not to stress too much. You'll get your gifts. Your baking will be finished. Your holiday parties will be fun. Enjoy your families. Let them know what they mean to you. They are what is important now and always.

December 7th 2007:

Well Lily has been off the Vigabitrine for one week tomorrow. All was going great! She has been incredibly alert, happy, visually attending, just doing great. She was however having a lot more myoclonics and atoncs (jerks and drops for those of us who haven't spent the last 12 years in medical training).Then last night, well early this morning I was awake due to being woken up by a crying/coughing Andi at 2:30am and unable to go back to sleep, I heard a noise coming from Lily's room at 5am. I went in thinking she was just up, but she was in a full blown tonic/clonic seizure. It went on for what seemed forever and it's frustrating since I just saw one for these a little over two weeks ago. She was sleepy this morning, but was in good spirits by the time I got her on the bus. I haven't had any calls from school so I am assuming her day went well.

When I spoke with the study nurse she said she has to be off a med for 4 weeks before you can start a study. Then we have to do EEG, EKG, Blood work, etc and a 4 week diary on her seizures, then start the study, but since it is a study in February she will start with placebo and sugar pills so she won't even start the med (I will keep it unnamed for the sake of studies whom are anon) until close to March! So I have decided that if I see many more of those puppies the study is out of the question. It does suck though, since the study is to help her jerks and drops. I can't imagine what life would be like not worrying Lily is going to break her nose or teeth with a drop seizure BUT I cannot and WILL NOT go back to her having daily tonic/clonics, no way. NO WAY. She is doing too great right now, she is developing, trying to walk, trying to move around, and touch things. We will soon be starting Hippotherapy (Horse) after the holidays; we can't start worrying about the big grand mals. Ugh, have I mentioned my despise for seizures? A few times I am sure.

Tonight we get to go on Lily's bus around town and look at lights. We did it last year and had a great time! Andi is super stoked b/c she always wants to go on "Sissy's" bus every morning. She finally gets to! Plus I am a huge cornball at Christmas time, I love the music and looking at lights!

Wish us luck, maybe she is having withdrawal seizures and those will fade with time. Otherwise if the seizures are b/c she needs Vigabitrine, then we are out of luck.

Pray for us! 

Sept. 20th 2007:

So this week was spirit week at Lily's school and again.... I suck!

Mondays she doesn't go to school, she does all her therapies, Tues. was twin day, and well we don't have any friends yet at the new school. Where are Emmie and Kaitlyn? Then yesterday was picture day, she looked so cute in a black and blue outfit and pigtails, but her note said, we might need to plan on retakes.... then today, today was a day I thought we could do a spirit day and I look at the calendar and it says, dress as your favorite sports team. Sports? Ewwww! So I put her in a shirt that says #1 best dressed, I figure that is our sport, dressing good! Tomorrow is class shirt color; I think I can handle a red shirt.

Tomorrow is Lily's first field trip in Elementary school! We are going to a home and cooking, then having a picnic in the park. I am planning on helping. Fun stuff!

Andi has been so funny lately; she is so smart I am wondering if there was a mix up at the hospital. I told her the other night that Grandma was coming over and she said "why you have to get another tattoo?" The previous week she watched them so I could get my tattoo on my shoulder touched up which was a butterfly and I added a Lily and a clover for Andi. It is very cute. A little weird though that your two year old thinks that is where you are going!

She also has a good sniffer, I am a little embarrassed to admit this, but I ate a pickle then came over to her and gave her a kiss. She looked at me and said "I want a pickle too!" That is either a testament to a good nose or bad breath.

I am feeling guilty because our store Closet a la Mode is closing and we have a 75% off sale so it is super busy so when I am not running payroll I am at the store helping my sister and I am not getting much time with the kids, which I hate. I usually take Thursdays off and spend them with Andi while Lily is at school, but I haven't been able to do that lately. Just a few more weeks. I miss my girls. I still stay home on Mondays with them, but we are running all over town for Lily's therapies so it really isn't a time for us to do fun things. A few more weeks.

Otherwise health wise everyone is good. Lily is still having her scream fits in the middle of the night and I will bring this up with Neuro, but we don't go until November, since Lily's mom is stellar and completely spaced her apt. in Aug. I am still using the sick card on that one though. 

August 14th 2007:

So I have decided it is ok to be smug when it pertains to your child who you were told... "Would never".

I have heard so many times from the Ortho Dr. that Lily will never walk. That is why he wouldn't approve her for AFO's, he said she'll never walk. Then last apt. he said "maybe" since she showed a lot of progression, but he also noted that without that walking reflex she most likely will never walk. I have been very accepting in the fact that since I have heard it so much, well she probably won't and that is ok. But guess who will take a step when you hold her under her arms? Lily. The child that finally by her 2nd birthday would straighten her legs and stand if you held her up. She is now having that reflex that causes her to take an actual step with her legs. It is incredible and even more amazing that she just finally decided to do it on her own. She has no weekly hourly one on one PT. She of course has some at school, but Lily likes to do things in her own time. On her schedule and that is good enough for me. It is progress and as long as there is progress there is hope. She may not be able to stand unassisted until the age of 10, but who cares. She is trying, she is growing and darn it she is learning. She will always be my darling, gap toothed, blue eyed angel that always has me second guessing her abilities. Thank you God for giving me that extra ounce of hope I have needed lately.

And thank you Lily for being the best daughter in the world! What a great way to great ready for your 5th birthday!!!

Oh I cut my hair all off, 6 inches to be exact and Andi won't quit asking me "who cut your hair mommy?" Like 20 times a day. Funny kid.

August 10, 2007

So we all went to dinner at a close by Chinese Restaurant the other night and I got to hear about a miracle! You might hear a sense of sarcasm here if you are listening closely.

So we are eating and over comes a cute young girl who works there and she says “do she (looking at Lily) have cer…cerebral… pa..pa…” “Cerebral palsy?” I ask. “Yes” she says, “because I have a sister with that.” “Oh really, how old is she?” I ask, interested. “Um like 21 or 22” she replies. “Well she hasn’t been diagnosed with that, but basically that just means your brain doesn’t tell your body how to move so it is safe to assume she does have cerebral palsy” I explain. “Oh well, my sister had that, but she just needed to go to a school and she doesn’t have it anymore…. She is normal now”. She tells me. “Wow” I say with a not so genuine smile. I wanted to ask if she is in any medical journals or was this deemed a miracle by the Catholic Church, but I just decided to stay with my wow and smile.

She was young, meant no harm, but CP is not something that can go away. You can do therapy, you can strengthen, but to my knowledge that sounds down right miraculous.

As a sibling to a brother with CP, I have known that word and have known how to pronounce it and even spell it since a young age. I even gave a speech about it in speech class and was told by my teacher that she had nothing to critique, it was perfect.

The whole thing seemed odd to say the least. I like the whole “she’s normal now.” Yay!

So scratch the whole PT thing, not happening. Of course. Schedule conflicts. What else is new?

Andrew is on his third vacation this summer. He is in South Dakota, it is the Sturgis bike rally and he is “helping” his parents out. They have a very large nice place that has cabins to rents, parking spots for trailers and a bar and restaurants. I’m sure he is helping, but I am also pretty sure he is enjoying himself.

I am not sure what we are going to do this weekend, but we’ll figure something fun out. Can’t be cooped up all day at the house, we all get annoyed with each other.

Have a great weekend.   

July 31st 2007:

Lily is doing GREAT in K! I am so proud of her! She isn't sleeping in class, and she isn't too wiped out when she gets home. I think she likes it. I really do.

I really like her teacher. She calls with any questions and I really appreciate that. Tells me she wants to really know Lily.

Andi is doing great with potty training. She does better with pee and she is still wet at night, but this is the very early start of it and she is doing good. After we spent a week at VBS where I taught both girls in my class, Andi is into praying. It is so cute. Last night she crossed her fingers, closed her eyes and said "Thank you God for being proud of me" then I said, "We need to pray for our friends" and she said "pray for Kaitlyn, Emmie, my best friends and Jean. I love Jean." It was one of those moments you are so proud of your kid you want to squeeze them in joy.

Unfortunately this morning I wanted to squeeze her for not joy. She refused to sit in her car seat. Ugh. I hate battles.

My mom took Andi to Greer this past weekend and I think she had fun. I missed her a lot and glad she is home. I can't believe how quiet our home is with out her.

I love my Lily, but I need my Andi around too. I really am a lucky mom; I do have the best of both worlds. 

July 4^th 2007 Independence Day!

Hi folks, I know this update has been long awaited, but life has not slowed down once for me to be able to sit in front of the computer and give the details this entry deserves, so it may be long and winded, but it is worthy of at least 3 entries on their own.

I will start and say today is Wednesday.  We got out of the hospital Sunday, but yesterday we were at our pediatrician because I had some major concerns about Lily.  She had refused to eat the entire time at the hospital, she had a facial rash, severely runny nose (right nostril only, of course) and constipation, so I understood and just gave her lots to drink.  Well back at home she still refused to eat.  She was drinking, but not wetting like I thought she should, although she did eventually have a very wet diaper I still called the Dr. thinking the worse, acidosis.  They got us in quickly and he walked in the room and said “well that is the problem”.  I didn’t even say we were coming in about her face, but one look at her acne like complexion and dry cracked, bleeding lips and he said “impetigo caused by possible staff and possible strep due to the fact she was exposed” he happens to see my nieces and nephews as well and diagnosed my niece with strep last week, she was up north with the girl the past weekend.  So he said it should clear up with antibiotics and she should start eating again, he said to of course call if he is wrong, but he said, “That never happens”.  He of course was being facetious knowing we go way back and he told me there was no way Lily was having seizures back in the beginning.  He is a funny guy we love our pediatrician!  Seriousness is for the birds.

So at present time she has had three doses of antibiotics and actually ate a yogurt this morning, so this is hopeful.  Her nose has turned from yellow snot to brown, bloody snot, so I am assuming the antibiotics will kill the obvious sinus infection she happens to have as well….. sigh… my poor baby.

So we got to the hospital at Wednesday at 8am.  Side note, I realized I was wearing a very wrong shirt for the hospital we were in.  My “Dudes Prefer Blondes” shirt did not go over very well at the Starbucks counter.  The ethnic girls were snickering and laughing and I felt I was back in high school.  In my defense, I wanted to wear cream sweat pants with a little blue on them.  The shirt is the same blue color but with cream in the writing. It matched perfectly.  Obviously not a lot of people with a good sense of humor were around.  Back to our stay, she got in her room and all the leads on and hooked up by 10am.  I was very impressed by the efficiency of this dept. it was a whole new wing of the hospital.  Not anything like the last time we were there for a video EEG.

The first day she had a ton of drops and I hit the event button (a button you hit when you see seizure activity, it marks where the Epileptologist (Dr.) is supposed to look).  With every hit of that button we have a bell ringing, nurses running in, lights being flipped on.  Very dramatic, so I quickly learned that only if she has a cluster should I hit that button and by the end of day one, I figured they had 10 drops marked, I will just wait for a big seizure before hitting that button. 

We had two mattresses on the floor with a padded boarder called a corral.  That is where Lily and I sat and slept for 4 days.  She didn’t have a lot of space to move due to cords attached to her head, attached to an outlet, but she was able to roll around.  I made her sit up a lot and I moved her to her chair a few times to not eat for me.

Our first night was rough.  Neither of us could sleep.  I could have sworn they were driving the zambonie around in circles and someone with no hands was trying to sweep.  I am pretty sure they were just vacuuming and a noisy person was sweeping, but man they were loud!  No seizures that first night.

Thursday was more of the same.  No big seizures, just drops.  We did sleep that night because we were exhausted.

Friday, I decided to take matters in my own hands.  Dr. wanted to sleep deprive Lily to get her into a deep sleep, but I know that is near impossible.  I did keep her awake most the day, but I lowered her meds a bit and told the nurse she was up all day and can go to sleep.  Well she sleep deprived herself on her own and wouldn’t go to sleep until 11pm!  She woke up at 1:30am with what I thought was a seizure.  She screams out and I know what is next, so I hit the event button.  She thrashes around, but is conscious.  I think yeah, we got it and we will go home today. 

But in comes the Dr. on Sat. morning and says, “That wasn’t a seizure”.  I grilled him with questions thinking he obviously wasn’t looking at the right spot and he described what Lily was doing and told me what I had said.  I was embarrassed, because it dawned on me, not only were we being video recorded; everything I was saying was being recorded.  That is why they brought me that breakfast tray late; they heard me complaining on the phone that I didn’t get one.  My face blushed.  That was the least of things I said…. Oh well, can’t dwell.  Dr. said she has a very abnormal EEG, she has seizure activity, meaning spikes, but not actual seizures.  Her drops are quick seizures, but they are just a spike on the EEG.  He said she has this strange burst of spikes before she wakes up and he was trying to figure out if it is an actual seizure or just how she wakes up.  He asks if I wouldn’t mind just one more night and he would have the nurses wake her up out of a deep sleep and see what her brain does.  This will tell him if she is seizing in her sleep or not.  I said well what about that thrashing around that looks like a seizure and he says, “I am not saying it is not neurological, I am saying it is not a seizure”.  He said it is her waking up, unknowing her surrounding, maybe a terror, and her body movements are purely agitated.  He is unsure why she is agitated.

So ONE more night.  I had planned on going to a night swim party with the kids at an event one of the places she has therapies was throwing, but that got thrown away.  One more night.

Her and I fell asleep early, we were beat.  At 12am the lights came on, I woke up, but Lily didn’t budge.  I smacked the mat hard next to her and she opened her eyes, looked at me and went back to sleep.  She woke up at 5am with another seizure looking thing and went back to sleep.   I had to wake her at 9:30am to “feed her” aka shove her meds in her on some yogurt while she kicked and screamed.  Dr. said her brain activity was exactly the same when I startled her awake and when she wakes up naturally freaked out.  He said it is not normal, but it is not a seizure.  “And the 5am seizure?”  Not a seizure.  “Again, not normal, but not a seizure”.  I asked one final question.  “Can you diagnose her with  Lennox-Gastaut Syndrome?” and this was his answer “well she certainly has the LGS pattern, the spike and wave, sometimes but not always, so I can say she has a tendency towards it, but I cannot diagnose her with it.”  Story of our life!  Never a diagnosis ever!

So this is a summary for those of you like me who skip over things.  She is not having seizures; other than the hard to control drops that we will still just manage how we already are.  She has a very abnormal EEG, very abnormal movements that are unexplained and seizure activity, but not actual seizures.  Sounds confusing, but to us it is comforting knowing that we are sending her to Kindergarten in a few weeks and we can be a little comfortable knowing she hopefully won’t go status there.  You never really know though.  She will always of course carry her Diastat in her backpack with her at all times and the school has to make special precautions for her drops, but knowing she isn’t seizing and can de-sat, or cause more brain damage that is comforting.

So that was our exciting week!  Now today, we will relax and enjoy the day off!  I don’t think we will be outside, considering it is going to be 115!  Ugh, that is miserable.  The pool feels like bath water in that kind of weather.

You all have a lovely 4^th and I will update when we get home from our vacation to Greer this weekend.

Check out new pictures!  Andi got earings and by the way is all weaned!  2 years, 3 months and 5 days breast fed and all done! 

June 1st 2007:

So we are finally catching up on our sleep.  Three hours time difference really did us in.  It really took three days to get sleep and wake up back to semi normal.  Andi is still waking at 5:30am; I am hoping we can fix that!  Yawn....

Our flight went better than expected.  Andi did request to nurse, but we flew 1st class so I wasn't sitting by anyone so we were able to nurse discretely and she rarely cried. 

Our first day we went to Magic Kingdom and that was the best day we had.  We got a handicap pass that got us thru the lines super fast.  We got VIP entrance at Pirates which was awesome and watching Andi during that ride was so cute.  It's a Small World was also a great ride for the girls and so cute to watch.  Lily wasn't such a fan of those, but she did like the Flying Dumbo and Andrew said she sort of liked Thunder Mountain.  My sister said it was a little jerky for her though.  I got Andi to nap on my shoulder for 1.5 hours and she woke up happy.  We were able to stay until about 9pm.  My sister, niece and I had a fast pass for Splash Mountain that I have wanted to go on for years, but Andi was getting crabby and Lily was tired, hungry and crying so my parents and Andrew took them back to the hotel and we went on the ride.  It was a blast!  It was such a cute ride!  I loved it.  That was the best day.

The next day was Animal Kingdom, it was too packed.  Too packed and too packed.  We wanted to go on a train ride, but the line was 60 minutes outside so I asked if there is a handicapped entrance and they said Animal Kingdom has no handicap privileges.  He said that all their rides are handicap accessible and we would have to wait in line with everyone else.  I said my daughter can't sweat, she can't sit in the heat for an hour for a ride and they said sorry.  So we didn't do much there, we went to the petting zoo and walked around.  That was my least favorite day.  That night Lily cried all night.  We couldn't figure it out, she finally fell asleep but I had her stay with Grandma back at the hotel while my sister, niece, Andi and I went to Sea World and mom said she had the hugest poop and was in a fab mood afterwards. 

Sea World was ok.  Andi seemed to want everything in the place, more than usual, and was just whiney.  I think just too much forced fun. 

The last day was MGM and that was pretty fun.  I love movies so it fascinates me to see behind the scenes.  Andi played in the Honey I Shrunk the Kids play area and didn't want to leave, we let her play for almost an hour, but it was too hot and stuffy in there so it caused a huge tantrum when I carried her out.  That was it for that day! 

The flight back Andi didn't sleep. She was crabby but not that bad.  I can't tell you how glad I was to be home.

It is funny though, I constantly felt like I was looking for my Holland amongst Italy.  If you read Trip to Holland in my inspiration page, you know what I am talking about.  That writing is the best explanation of what life is like for us.  It is beautiful.  But I was thinking the whole time I was there, where is Holland?  This packed place is buzzing with people, it is exciting, and it is stem overload.  Where is Holland?  I found it twice.  I found Holland in the shade two times and I got to sit and feed Lily and talk with her in times of quiet and shade.  I constantly felt this is too much for Lily.  Too much heat, too much sounds, too many people.  She of course was a champ the whole time, she was an angel on all the flights, and she is such a trooper!  But I still feel this urgency to get her safe, keep her safe.  I found that there wasn't a lot she can eat there and that was stressful.  And I kept thinking about her in that heat, even with the little spray bottle and fan, it all just stressed me out.  But not her, she is my hero.  She is such a trooper!

She also graduated from Preschool on Wed. I have a special page for that under her 4 year old pictures.  Too much to put here!

May 22nd 2007:

So I guess just like the theme song goes: "You take the good, you take the bad, you take them both and then you have the facts of life."

With Lily it always seems you take the good with the bad.  It seems we had this fabulous, funny day then screeech halt errrrr.... crappy days.  Friday night Lily started crying for it appeared no reason.  Then after a lot of drops and nonstop crying I gave her half a klonopin.  Then she slept all night, but woke up at 5am and cried and cried and cried.  She was having myoclonic jerks and atonic drops and so we gave her another half klonopin and let her go back to sleep.  I had to work at the boutique and Andrew had to work at a big custom house so I had to leave the girls with Ms. Maria.  She has watched them every Sat. I work for over a year now so we love and trust her.  She said Lily ate, but she had to be held or she would cry all over again.  Andrew got home and gave Lily another half Klonopin b/c of the non stop crying and little seizures.  I think that was too much, but he felt he had to.  She slept the rest of the day, night and was semi ok on Sunday. It was a lot of off and on whining, but I didn't want her to have anymore Klonopin.  I checked her up and down.  No fever, no hurt bones, no bruises, no cuts, no diaper rash.  I messed with her ears and she seemed unfaised.  I don't know what her deal is.  I really think she just hates the drop seizures. 

Through it all she had a great day at therapy.  Music said it was one of her best days in months.  Then we went to neuro and he is upset with all the drops. 

So he asked if I would like her to spend some time in the EMU (Epilepsy Monitoring Unit) and I said YES!  She hasn't had any EEG's, MRI's or anything in years.  She needs to have another good once over.  He was all for it as well and wants to take another good look at her.  I will update when we get a date for the stay.  I really am happy to have this done.  It has been so long since we have had any hospital stays, but this isn't really a hospital stay, it is more like a long test.  I guess they have a new peds unit for the EMU.  When we did it last it was in an adult center, it was old and gross.  I am excited to see this new place and have her looked over to see if there is anything more they can do for her.

I guess since her grand mals are almost nonexistent I haven't worried so much about the small ones, but Neuro seems to think it is a big deal and we need to take a good look at what is happening.

I'll keep you all updated.

Orlando in two days!

Spell check did not like this entry!  I think I need a medical spell check.

March 20th 2007:

My niece Skylar is 10 today.  I missed school my senior year to watch her come into this world.  Since when did birthdays become a sad occasion?  Is it when it makes me feel old? 

Anyway, we had a great weekend!  Saturday we went shopping with Grandma Cheryl from South Dakota, then Gma went back home to give the girls naps so I could get supplies for Sunday’s party.  Then Saturday night, we went to Andi's favorite place in the world!  Peter Piper Pizza!  She had her cousins with her and she had a blast.  She loved us singing to her so much, she put the candles back in and wanted us to sing again.  She blew out her candles twice and chowed on her cake.  She was hilarious and we had a great time.

Sunday we had a big party at the park.  We shared the party with cousin Skylar and it went very well.  We had friends and family show up.  Andi made out like a bandit and absolutely loves her Baby Alive from Grandma Nancy.  Although, I feel like I need to take care of her properly since Andi feeds it stuffed, then it cries for a drink, but Andi doesn't give her bottle right, so I am holding a doll, giving it a bottle.  Oh brother....  I am such a sap.  I feel bad when a fake baby cries....

So we had a great time, Lily is on Spring Break, which is good since she got another ear infection.  Her constant runny nose is now causing other problems.  That sucks.  She is home with Grandma Cheryl.  She will be here until tomorrow, and then she will spend her days with Nurse Jennie when I have to work.

Andi had her 2 year well check and she is 28 lbs and 36"!  She is 75% for weight and 95% for height.  My tall little girl.  I wonder how I got such tall girls.... :)  I am only 5'11.5".

I will post pictures either later today or tomorrow.  I forgot to bring the cord to upload them here at work. 

March 14th 2007:

So Grandma Cheryl came to town yesterday and the girls love it!  Andi napped for 1.5 hours in her crib for Grandma.  She just wanted to go in her crib and that was it.  I wish it were that easy for me!

I am getting excited for Andi's birthday.  I love my kid’s birthdays!  I think we may go to the zoo with Grandma and then for Pizzie!  (Pizza) She loves Peter Piper Pizza!  Her birthday party will be Sunday, since someone in my family always has to be at the store on Saturdays.  I cannot believe my baby will be 2!  Sigh.

Lily has been having weird little seizures that really upset her.  She kept crying so much last night that I just brought her into our bed and that kid slept the whole night thru.  She usually wakes thru the night but she slept great hogging my side of the bed.  I didn't mind though.  That face is so beautiful I could stare at it all night long.  It really is mesmerizing.  I know I am her mom, but man... she has this face that just looks heavenly.  I know I am sounding corny but I couldn't help but stare last night at her.

She was sad before the bus came, so I don't know if she isn't feeling well or she was jealous Grandma was staying home with Andi.  Her teacher is the best on calling when anything is wrong so I am sure I will get a call if she is still sad.  Oh and I mean anything!  I got a call once b/c the night before Lily ate a bunch of hot pink ice cream and apparently it made her poop look funny.  Mrs. Jean called and said, "Her poop is funny looking".  I said, "Its cotton candy ice cream".

Now is anyone at public school going to call me like that??!!!?!?!  Sigh.

Feb. 27th 2007:

Sorry so long since my last update!

Lily is once again getting over another one of her "colds".  I put that in parenthesis b/c we have no idea what it is.  She has a runny nose out of one nostril.  It seems to happen about 2-3 weeks out of every month.  I am not exaggerating, ask her poor teachers who wipe it all day.

Anyway, she didn't have any snot this morning, so that is a good thing!  She is eating great, drinking great.  She is super smiley and happy.

Yesterday we celebrated her daddy's 25th birthday; I know I robbed the cradle.  We had fun.  Lily loves cake and Andi love birthdays so everyone was happy.  Andi blew out the candles.  I think she will do great next month!  She is already saying "twwwoooo" when we ask her how old she is going to be.  It is so funny.

So after some ear infections in both girls, and colds we are now on the road back to healthy.  Hopefully we can stay here for awhile.

I can't believe we are almost into March.  How can a school year fly by like this?

If she indeed starts Kindergarten next year, she will start in JULY!  She will have a one week break from summer program at her preschool and then she is in K.  I can't even believe it or imagine it.  She'll be a little 4 year old in Kindergarten. 

Ok well, I better get.  I just wanted to share.  It has been awhile. 

Feb. 7th 2007:

Have you ever met someone who says, "I don't like that?", and then you ask, "Have you ever tried it before?", and they say "no."?

How annoying is that?  I find it extremely annoying.  I like to think of myself as open minded and I found myself being very close minded about Lily's school situation.

I know I adore The FBC and would love Lily to attend there until she is 21, but she can't. 

I decided to put my big girl pants on and I just made a call to the school district and asked which school Lily is zoned for.  She said she will call the vision therapist for Chandler and call me back. Once I get the school name, I will make an appointment to see the place and go from there.

Now if this place is crazy.  I mean if it is a mess and I have a gut feeling it is not the place for Lily, then I will fight for Lily to attend the FBC one more year.  But I need to make sure I am not fussing over nothing. 

I know there will never be an environment like her preschool and it is a sad thing, but a reality.  So Friday I will just deal with Lily's IEP for what it is.  Work on Lily's goals for the rest of the year and then deal with the kindergarten issue after seeing the school.

Lily by the way is very fussy and cranky.  We don't know if it is a yeast infection caused by the antibiotics she was on, or her ears haven't cleared up.  I think if she wakes me up again at 4am for the third night in a row tonight, I will call the Pediatrician and have her checked out.

I just wanted to share that info with you all. 

January 10th 2007:

Just wanted to say I put up a few new pictures from Christmas Day at my mom's.  I still don't have ours from our families Christmas morning.  I will get around to it; I am sure before July 4th :)

Oh Andi tried to kill Lily the other night by giving her an M&M, while Lily was lying, on her stomach.  Lily was coughing and choking and I asked Andi if she gave Lily a M&M and she nodded yes.  I calmly said "that was very nice, but don't do it again".  Thank God Lily was able to cough to get it to pass thru, but that was scary!

Lily is back to school after the 2 week holiday and she seemed so happy to be back!

Her teacher called to tell me that she and her little BFF Emmie were wearing the same outfit yesterday.  What teacher not only cares, but calls the moms to tell them about that?  I mean could Lily have a better teacher?  Absolutely not!  Mrs. Jean, you are the best!  We love you!  PLEASE God, let me figure out how to get Lily another year at that place with finesse. 

Jan. 5th 2007:

So I am sure most of you have heard this news story:

http://www.cnn.com/2007/HEALTH/conditions/01/04/ashley.treatment.ap/index.html

It is about a child with a severe neurological disorder, much like Lily and her parents decided to stunt her growth and give her a hysterectomy, remove her breast buds, and give her hormone injections to stunt her growth. 

Well the media sure seems quick to judge this as inhumane and other choice words, but I don't think any of these people have the right to judge.  They do not understand what it is like to know that your child will be your responsibility for the rest of yours or their life.  Lily has the potential to be 6' tall.  She will be runway model gorgeous but completely stuck in her body.  The odds of Lily learning to walk are slim, to be realistic, and she will most likely need me and Andrew to lift her from seat to seat.  Imagining her future is scary to me at times and I think these parents were doing what they felt was the best option for them. 

I am not saying I would do that, not at all, but I can see where they are coming from and I think if Lily was in more of a vegetated state it may be an option for us.  Thankfully Lily, although very low functioning on all aspects, she still moves around, and I think as time goes on she will be able to help more and more.  She is now able to stand with assistance when I take her out of the bath which is an amazing amount of help on my back so little things like that make me think she will be able to help more and more, but maybe when we get to 9 and we aren't anywhere closer maybe that will be an option for us. 

I don't know.  I just wish people would be a little less quick to judge, especially something like this where most people haven't a clue what it is like every minute of the day you care for someone who cannot at all care for them self.

I can't imagine if I had Nancy Grace and Geraldo piping in on whether or not I should have had Lily's Corpus Callosotomy.

October 3, 2006

So my friend Wendy tells me about a new book being written called Chicken Soup for the Special Needs Parents Soul (something like that) and they are looking for entries and she thought I should enter.  She knew that was right up my alley and she was right.

For those of you who do not know who Wendy is let me explain a little about my dear friend.  When Lily was 7 months old I started searching the web for info about seizures and cortical visual impairment and I found a board of parents that supported each other and I saw a post by Wendy talking about her 8 month old acting exactly like my Lily, seizures, delayed, visually impaired and I said “oh my gosh, someone like my Lily!” and I posted to Wendy, please email me and from there we have been emailing daily.  We went through the same things at the same time.  Her up days were usually my down days and I would cry on her virtual shoulder and I like to think my ups were on her downs and I was able to help her as well.  I have talked with parents with kids who have “been there, done that” but going through those “there’s” and “done’s” with someone is very comforting.  2.5 years ago Wendy challenged me and said she would visit me IF I ran a 1/2 marathon with her and I said “ok” although I had never mastered more than one mile in MY LIFE!  She held her part of the bargain and I did as well.  I got to visit them in their hometown of Nashville a month later and although we haven’t seen each other since then we still email and call and send gifts on birthdays and Christmas.  It is funny, I can’t believe the friendship I have formed with her and most definitely consider her one of my closest friends even though we have only met in person a couple times.  Recently her little Langan started taking her first steps and I cried tears of joy for them and when she sent me the video it become part of my daily routine.  I have to watch Langan walk.  Wendy has been one of Lily’s biggest supporters and I feel like I am one of Langan’s. 

I guess I wanted to explain to you all who Wendy is and what she has done for me so when she says “you should do this” I really respect that and really want to do it.

I decided on the topic of acceptance because that is where I feel I am at.  I really do and although I have only had one really good session of “free time” to work on this I feel like I am getting somewhere with this.  Well wouldn’t you know right when I start writing about acceptance not only do I get one blow but three blows in less than a month that makes me think I need to take the whole thing and hit delete because maybe I am not ready to preach about acceptance.

First of all I am grateful that the state of AZ pays for diapers for children over 3 that need them, I do not expect pampers but when the cheap size 6’s were leaking badly I said she needs something bigger and they met my needs but the sight of these Medium Youth Diapers turned my stomach.  They are so big and it just made me realize she isn’t a baby.  She isn’t in cute diapers she is in youth diapers that say I am a special needs person that cannot go the bathroom in the toilet.  Those hit me when I least expected to be hit.

2^nd was this Sunday.  I volunteered to lead Children’s Church for ages 4-6.  I like the older group but I wanted to be in Lily’s class.  I had a couple out of control kids that were giving me a hard time the entire time so when I told another child to sit across Lily and the out of control child  said “eww” I was crushed.  I told her very sternly that although Lily cannot talk she can hear and that hurts her feelings and that I am her mother and I can talk for her and you do not disrespect her or me.  I think that is the just of it I was so upset I don’t remember my exact words but I was proud of my composure although my lip started to quiver I did manage to calm myself and finish the session but my heart was broken.  I mean to hear a kid call my Lily “ewww” well you might as well take a sledge hammer to my big toe b/c that would hurt way less.  My 16 year old niece, Ariel, was helping me teach and she got very upset as well and had to scold the same child later who was still just acting up and she listened to her better than me.  I think Ariel would be a great teacher, she just laid down the law with her but I knew it was b/c she was mad at the comment made about Lily earlier. 

3^rd if that second one couldn’t be worse we had to go see the neurologist whom I was glad to show him how well she was doing.  Less seizures (not gone but less) and she is sitting unassisted for up to 10 minutes.  She is vocalizing and her vision is much better but when I said she can sit he says “can she crawl?”, “can she stand unassisted?”  When I ask about people asking if she is autistic he says with the severe mental retardation that she has she is highly likely to have autistic tendencies.  Then since Andi was with us he said aren’t you glad she is like she is.  Yes I am glad Andi is like she is but you know what I am glad that Lily is like she is as well.  I was just so upset, I felt like he was talking about her like I wasn’t her mother.  Like I was disconnected to her, she is my daughter.  I am not her foster mother; I am not her advocate (I am but her mother first).  I hurt when you talk to me like that.  This is why I am switching neuros.  He could be the best of the best but you know what, I take a nice bedside manner over his pedigree any day.

So here I am thinking am I really ready to preach acceptance when I can’t handle the size of diapers, rude comments that will happen our lifetime and rude doctors?  But then again I think I would not be human to not be hurt by these things and just because I accept Lily doesn’t mean my “mommy heart” won’t be broken from time to time so yes I am and I will.

Sept. 15th 2006:

I got some sad news today.  A little boy's great-grandmother in Lily's class whom has raised him pretty much from birth has passed away.  She has been battling cancer for years but it seems like she has lost the fight.  I am just heart broken.  She has been a huge part of my "recovery".  I met this group of moms/dads/grandparents when Lily was a year old during something called infant group at Lily's preschool.  We would come every Monday and we would do a group with the kids then we left the kids with teachers and us parents met, talked, shared, ate, cried, laughed.  That first year I met all these people my life changed.  This was my first step in acceptance.  I learned I wasn't alone with a special needs child and we all learned from each other, and grew because of each other.  As the years gone on we knew Kay was sick on an off but she still took amazing care of Amari so it made you forget the severity of it all.  By the time our kids got into preschool our time together was more for fun then as a crutch.  I didn't need these people the way I did two years previous.  I accepted Lily and didn't need the support the way I did in the beginning.  We started seeing less and less of Kay last year and by summer program I heard she had Hospice in her home.  Amari was still at her home when I was asking this summer so again I still failed to see the severity of it all.  I told the other moms we needed to do something for her.  Bring her something, visit her.  Our intentions were good but failed to put into action b/c of life.  It is such an awful statement to be made but life was busy and we never visited and today Lily's teacher called to tell me she has passed away.  I am just sickened.  She was such an amazing woman.  I understand she is now at peace.  She knew where she would spend her after life and I know we need to be at peace for her but I can't help but think of what a loss here has been left.  A sweet 4 year old has lost his comforter and provider.  I know Amari is what kept her on this earth longer than she was "supposed" to be it is just too bad it couldn't be longer.

May you rest in peace dear sweet Kay.  Grandma to us all. 

Sept 12^th 2006:

So I am learning that I need to write all my entries in word before typing it online b/c I can’t tell you how many times my entries have been deleted and some times I feel like throwing my computer across the room but today I feel like just laying my head in my hands and not writing.  It is the latter that is more depressing.

I will start over b/c it was important stuff about my kids that I was mentioning and I do have some time on my hands.  Time I will not have later today.

Lily is doing well except for she still has a constant runny nose just out her right nostril and it is thick and yellow and it makes her breath stink.  It is nothing brushing her teeth does to help, it is in her throat.  It is a stinky nasal smell.  My dad has bad sinuses so I know that smell.  Stinky!   My dad is worse though, his is sinus and coffee…. Sorry dad.

Anyway gotta call the ENT and see what he thinks now that her swallow study was perfect.  She still has the occasional noodle come out of that right nostril as well so something is not right.  Why can’t she have just one normal problem that can be fixed?  Why must we stump every doctor we come within arms reach with?

On to stumping Dr.’s, we got a call back from Dr. Haas’ office in San Diego who I left a message with and they said every single test, blood samples, skin sample, muscle sample have all been negative she has absolutely no sign of mitochondrial disease, no retts, no anything.  He’s stumped. 

On to more stumped Dr.’s we are going back to our old Neuro that we really liked.  He saw my niece for migraines and he remembered us really well and was asking my sister about Lily so I thought he was so good at diagnostics and actually cared so let’s give him another go.  Our current neuro has yet to do one diagnostic test even though I have asked several times and we have been with him for 2 ½ years now.  Time to move on (again).

We are still struggling with finding a nurse for Lily.  They sent someone over for a consult and they told her different days and hours than what I requested about 20 times and it wasn’t a great match but since we are in a tough situation I told her to come on Friday and we will see how it goes.  I am so sick of tripping all over red tape with this nursing situation.  What I need to do is get rid of Andrew’s truck and then get a nanny.  I doubt that will go over well but it is what I want to do.

Let’s talk about Andi, she is crazy!  What a character, man!  She is currently obsessed with “Row, Row, Row Your Boat” and she wants to hold your hands while you sway her front and back.  She wants to Row with Lily in the car, with her dogs and with her stuffed animals.  She has the “Row, Row, Row Your Boat” down pretty well but it is the “gently down the stream” part that she could use more practicing.  It is pretty cute though.  At music therapy this mom was telling me about her 15 month old and her 20 words and I said I have an 18 month old at home with her dad and she says “how many words does she have” and I said “a lot”.  I have no freaking clue.  What does she sit there with a notepad and count the words the kid says?  I can see counting 5 – 10 words but c’mon 20?  She said she actually counted the words; I don’t have time for that.  Anyway also big news on the Andi front, she is now saying “poop” and running to the toilet.  She wants her diaper off and lifted on the toilet.  She will grunt and try to poop but after two seconds she is done.  She has yet to actually get the deed done but we figured we better get her own toilet last night at Target and she likes it but hasn’t actually used it.  I don’t really think she is ready, she is too young but I like that she is taking the lead in this and I can follow b/c I am no expert.  I am changing diapers on a 45 lb 4 year old so yeah Andi get to it.  I’d like one in diapers much more than two.

Sept. 6th 2006:

I am back from my long trip away in NYC!  Although I do admit to a wonderful time, I really missed my family!  I could not wait to get home and Tuesday was spent very homesick.  I think we should have gone home on Monday and I would have felt better but I am home now and back to work and very busy!

Lily is in school right now.  Andrew is meeting her off the bus today for me so I can work.  Since our favorite nurse Mrs. Char is now off for maternity leave we are scrambling.  I did put in a request in JULY to tell them I needed someone in Sept. and was someone there today, NOPE!  Now after letting them know it is imperative that someone starts coming or else we are switching companies they said they have two new nurses who we will interview and we should have a new steady nurse starting next week.  Cross your fingers that is the case.  I am not much for confrontation so I would like this to go smoothly and we find someone very complimentary to Lily.  I know no one will ever be equal to Mrs. Char but we are hoping for someone Lily will grow to love as well as us.

Andi did well with out her mama and had fun with grandma and daddy.  She was so cute when I came home!  I didn't dry up like I thought I would and she of course wanted to nurse so I let her but she wasn't so interested and I actually got her to sleep without nursing, a first for me and she didn't want to nurse this morning so maybe we are going to be done soon.  I am so ready to be done!

I will blog about my NYC trip when I get a chance so I don't bore you who are interested in my bug and not my random ramblings.  :)

I am home and glad!  I will not leave my kiddos again for quite sometime.  That is the truth!

We are all going to South Dakota for our new baby niece Avery's baptizism on Oct. 6th - Oct 9th.  Should be a nice time to go.  Not too cold!  Can't wait to see that new baby girl!! 

August 11, 2006:

Lily continues to do well.  Her eyes do look their worst today.  They are very red but she isn't complaining.  We stayed home yesterday but she is with her nurse today.  I really think this surgery was successful, her eyes really seem to focus better and they aren't wondering around like they used to.  I really think it helped!  I took a picture of how red they are but can't post until I get home today.  She is such a trooper, man that kid is awesome.  I just love her more than words can say.  I just want to squeeze her.  She lets me put the cream in there with out a complaint.  Sometimes I feel even worse when she doesn't complain.  I just couldn't be more proud to be her mommy if she won Olympic Gold at almost 4 years old.

I want to shout off the roof tops, I am the luckiest mom in the world!  I have the best kids ever! 

I should give Andi a shout out as well.  Ever since her molars pushed thru she is a different kid.  So much fun!  She hasn't gotten scolded in a long time!  She knows when I say no I mean no and listens.  She put two words together the other day.  "Pretty Shoes" so I had to buy them of course at Target.  I have a picture to post of that as well.  She loves those boots!  She says in her own way "what are you doing?" she says "what's that?" she says so many things I can even think of them all to name.  She is so amazing to watch her development.  It is also amazing how different she is when she is teething and when she is not.  I sure hope those incisors wait a little while before they ruin our fun. 

School starts Tues. the 22nd and so I am glad she is starting school with her vision seemingly in much better condition!  I am also glad to get her back in school.  Home is so boring for her.  Can't wait to get back to routine and see all her friends! 

July 21st 2006:

"Feeding Lily"

So I am tired in the morning, I am tired at night.  I like handing food to Andi and letting her take care of herself.  She feeds herself, she drinks all by herself.  She tells me when she wants more, she tells me when she is finished.  She can eat in the car on the way when we are late.  Feeding Andi is convenient for a fast lifestyle.  Lily on the other hand takes time.  Feeding Lily means stopping what I am doing, taking time and stopping.  Every bite takes minutes.  Medicine with a few bites.  Tricking her with pudding and veggies every other bite.  Giving her drinks in between bites.  Making assumptions that she wants a drink.  Assuming she is ok with the meal I have prepared for her.  Knowing that she would prefer meal of pudding and yogurt but knowing she needs protein, veggies and not too much sugar.  See feeding Lily is always something I have to do.  It is something I rarely look forward to doing but the minute I am finally seated and feeding her I am happy, content and quietly thankful that I have to feed her.  Lily makes me take time to slow down.  She makes me so happy just to see her happy with every bite of dessert, which she gets with every meal.  She makes me happy to watch her clap her hands while eating her sweets as to say "more mama, more".  Without Lily I would probably have an ulcer already.  In a rush rush world I actually am allotted a "time out" at least 2 sometimes 3 times a day.  (Not that I don't feed her 3 times a day, she is with someone else a lot of times during lunch time, no need to call CPS) 

July 7th 2006:

So Lily did awesome until we came back home.  July 4th she had 2 seizures, she hasn't had two seizures in one day in months!  I decided to give her an enema because she was having a hard time pooing and she has been better ever since.  Maybe it is connected, I am not sure but whatever. 

She is home with a nurse today, a new one since our favorite nurse Char went on maternity leave but the new lady seemed nice. 

Andi is at daycare today.  Friday's are the only day I work all day.  I spend my morning at my office job (payroll) and my afternoons at the store (closetalamode).  Tomorrow I have to work all day at the store and we have Miss Maria come and watch the girls.  She is from Andi's daycare and Andi just loves her and she is good with Lily as well so we trust her and like her a lot.

Anyway that is our boring update.  Lily's last week of summer school is this week so we will be scrambling for help the next month.  Hopefully we can get some more nurses in.  This new lady is moving to the west side so she is just helping out, she is not permanent. 

**I put up new cute pictures**

June 30th 2006:

Crap!  The school had to use Diastat on Lily yesterday because she was seizing over 3 minutes and apparently it was violent.  She hasn't had one of those since early May so I am pretty bummed.  I didn't see it and of course the poor kid slept from 12pm yesterday pretty much until 6am this morning so I haven't seen any activity yet.  I am now smart enough to not expect them to not come back but I just kind of always hope they don't.  I mean she seizes every day just not the big violent ones, those I like to stay gone.  :(

We are going to Greer today until the 4th so that should be fun.  It will be fun after we endure the 4 hour car ride.  That part pretty much sucks big time.  Andi is not a fan of the car seat but what can we do?  I wish you all a happy and safe 4th!  No drinking and driving!  I mean it! 

May 17th 2006:

I forgot to share a story from Monday at Music Therapy.

So Andi runs the waiting room wild, she tears the place up while we wait for Lily.  There are the same people there weekly and I get to know the mom/dads/respite care workers pretty well that have the same time slot as us and one mom there is the QUEEN of Doom and Gloom.  I think she feels that God took a dump on her by giving her an autistic child and whoa is her.  I usually entertain her sad little life while I hold my eyes still from rolling out of my head.  Her son is austic and yes I am sure that is a hard dx to deal with but guess what, it could be worse, suck it up and put your big girl panties on!  Ok back to my story... this is the same woman I mentioned months ago ruining the cute story about the Down syndrome girl cussing at school, her comment was "I wish I had that problem".  Well "Debbie Downer" was back in action on Monday when Andi was in this other families face with a baby, she just wanted to touch the baby and I didn't want her touching someone's baby (as I wouldn't want a strange toddler touching my baby) and she says "I am sure I am not the only one who would say they only wished their child was that curious at that age, count your blessings". WHAT?  HELLO?  Did she just tell ME to count MY blessings?  Oh no she didn't.  All I said was "I do, believe me I do."  Ok lady your kid freaking walked into this office.  Your kid threw himself on the floor b/c he didn't want to go into MT.  Count your freaking blessings.  Lily will go where ever and to whom ever I send her to.  She gets rolled into the building in her freaking WHEELCHAIR.  She is telling ME to count MY blessings?????  Ok Debbie Downer it is soooo on. 

April 17th 2006:

GRRRRRRR..... So like any holiday it seems to be spoiled by seizures.  I don't get it.  All I want is for Lily to be happy and have fun but it seems every holiday the little jerks in her brain seem to go haywire and set off firecrackers. 

When she had her first one at 7am while looking at her Easter basket I knew we were heading towards a "Seizure Sunday or Seizure Easter" but wasn't expecting them back-to-back all day long.  She had one during the egg hunt at church, during nursery (I was in there with her), at my mom's house when I decided Diastat was needed, she slept most of the day, woke up and bam another.  We went home she was in a good mood and couldn't sleep so she was up off and on all night and woke up ok, but her nose that is usually filled with thick green crap is now filled with blood.  I am calling her ped b/c she has been having this nose crap pretty much since November.  Lately it is just one nostril and it is very thick and green but recently we have noticed her food coming out of it, just the right nostril.  I don't know if it is all connected or what but I think she needs antibiotics and I don't know what she needs regarding the food coming out???  Sucks.  Always something.  I just wanted my sweet girl to enjoy her Easter.  Too much to ask I guess.

Andi had fun and it was hard separating my love for watching her experience it all and not be sad for my sweet girl spending her day sleeping because her brain won't cooperate.  I will post pictures soon.  I had to use my digital recorder to take pictures since my camera is still missing and that takes more work to hook up so I will post them when I can.   

April 4th 2006:

So "Seizure Saturday" is back.  Stupid.  Oh well, it seems to just be Saturday so we'll take it.

We thumbed our nose to Seizure Saturday this weekend and still went to the park.  There was a special day for special kids at a nice park in Scottsdale and we had a great time.  Andi is always better outside running around as opposed to cooped up in the house and Lily loved her first pony ride!  We had a really nice day and were so glad that this day was organized.  Very nice.  I will post pictures when I have a minute or two.  Ha....

I am super busy with working my job in payroll for my dad and when I am not there I am at the store but Lily seems to be having a lot of meetings lately and we have a field trip this Thursday at a farm so that always takes first place to anything else so needless to say I am very busy without a minute to my own but I signed up for it and love every minute of it.

Andi has been very rough at night lately and I have been doing ok with her the first 4 nights but last night after an hour of her nursing and not going back to sleep I put her little butt in the crib and she cried no screamed bloody murder for maybe 5 minutes and then was out.  So I was glad I did that.  I thought she would cry for hours but she didn't.  Although she only slept for two hours in there that was about the hardest two hours of sleep I have slept in a long time!

Lily is getting registered for summer school at her preschool.  I am so glad they offer one!  Only down side is there is no bussing so this will be a very eventful summer with me taking her and picking her up and trying to work with her.... if only they offered an after school program... hummmm Mrs. Jean if you are reading this what do you think!  :) :) :)

Feb. 25^th 2006:

I am super tired so this will be quick but I just had to share what a fun day I had with Lily!  Grandpa Ray passed away on Wed. we are happy he is finally at peace and his poor body doesn’t have to fight anymore but are sad for his wife, Andrew’s Grandma who has lost her second husband.  May peaces overcome her and help her through this rough time.  Andrew left Friday for the services and will be home tomorrow, Sunday, his birthday.

I wasn’t feeling well today, we had to work all day at the boutique to get ready for opening and after a long day I was bone tired but still had to go to the mall to get daddy his birthday gift so me and Lily and Andi all went to the mall, meaning I push Lily with one hand and hold Andi with the other.  I hear Lily giggling but think it was a fluke thing and besides I was frazzled so we power shop and I get to the car, obviously super frazzled b/c someone thank goodness was nice enough to have seen I dropped my phone and put it on my windshield wiper. 

We head to my moms, she was having company over to welcome some Missionaries who are in town and Lily was sitting with Aunt Gloria and she heard her laugh and Lily just started laughing, hard, full out giggles.  She had the giggles for an hour off and on and when they were on I took her and dipped her up and down and she just laughed and laughed.  I couldn’t get enough so I was playing with her and she was just giggling!  It was getting late so we had to head home and Lily giggled the