4 Kids. Are we crazy???

National Blog Posting Month...

2009-11-01T19:24:00.000-08:00

Ok so Kari is "officially" participating in NaBloPoMo, I am not going to sign up but thought I would try to keep up. So here is day one post...

November is set to be a busy month, it is hard to believe that October is already over! We have had so much fun in October! The first week of the month Jason and I celebrated our 10 yr wedding anniversary in Washing DC. We stayed with Jason's sister and husband in their new home, as their first house guests. They were wonderful hosts and showed us a good time. The kids all shared time between Pam and Joes house, and Grandma and Grandpa's houses. We left on Thursday and returned on Monday, the perfect getaway!

The next weekend we spent celebrating Jason's birthday. Spent the whole time playing together as a family. We decide to go to Octoberfest at the mall and didn't even go inside due to the overpriced beer and brauts. So we went to the pet store and looked at all the little puppys for a while and ate at Mezcal... Not even thinking about it we get out of the car and Ezra announces "Dad you get to wear the hat!" Jason quickly responded "No one is to tell them it is my birthday or we will leave right now!" So no hat...

The next weekend it was my nephews turn for a birthday. Simon turned one so we went to help celebrate. We drove as far as Fort Scott on Friday night and on into Joplin Sat for the weekend. We had not been to Brian and Gabrielle's house yet so it was cool to get to see their place. The kids got a huge kick out of reading with Gabrielle and playing with Brian. Simons birthday party was a total blast! The kids really enjoyed getting to play together, hopefully it won't be too much longer and we can all live closer together so they can play more often...

This past weekend we had our Halloween fun. Night of Light at church was a HUGE success!!! I was so impressed with the response we received! God is good all the time, and all the time God is good!

Government...

2009-10-05T15:58:00.000-07:00

So for going on 2 years now we have been dealing with different government agencies. There are many different resources out there to help families in need. Problem is "need" is a relative term. Anyway, for a long time we have not qualified for help because for one reason or another something has been in the way, just about the time we get one thing in line with qualifications the policy changes and such is the vicious cycle.
Finally in June we were qualified for SSI benefits. Haleluah!!! This means extra income and a medical card. From day one the income has been irrelevant. We never wanted the money although it will be helpful... The medical card was the crucial piece. Just as info SSI benefits run 2 months behind. So we qualify in June and then receive the benefits in August. So a direct deposit shows up in Avangeline's savings acct on August 1. So I call the Social Security office and inquire as to when the medical card will be showing up. I was then informed that they do nothing with the medical part of it and I will need to contact SRS. Why I was not informed of this in the beginning is yet to be determined. So I contact SRS and ask when my card will be showing up. They have no record of us needing a medical card... You have to apply for one, imagine that. So a little about the application, first off it is 13 pages long, and then they allow extra space at the end just in case you need it. Guess what with a family of 6 it ends up being about 15 pages long. Now I am no stranger to this application because I had just filled one out for childcare assistance. Witch by some loophole we don't qualify for but that is another story. So I just ask them to use the application they have on file to process the card. No can do. It boils down to a box being check on the form but they cant use the same application. So I fill out a new application, hand deliver it to the SRS office, wait a few days and call to check status. I do not have to qualify, that has been done with SSI so in my mind it should be a file and print card type deal... Well at any rate day one I call, no application on file... Day 2 I call no application on file... each time I am given the number to the healthwave group, also no app on file. So by Friday I am loosing my cool. The lady on the other end of the phone says it would be just as easy to fill out a new app because there is no record of it in their office. So I give her an ear full about how with all I have to do filling out another 15 page application that they have one of on file but won't use and is making no effort to find the one I brought and put in a mans hands, so on and so on... So I tell her I will give it one more day and then they can expect to see me in the office filling out a new application and not leaving until it has been processed. Of course she trys to explain to me that it takes time and that it will be impossible to process the form with me in the office because they have 45 days to get it done. I assure her that I will get my way and to expect a call Monday. So it's Monday, and as promised I call the office this time I get a very nice man who makes an effort to find the application and is very sympathetic and asks that I give him an hr and he will call me back. One hour later this nice man calls and states he has e mailed the entire office, talked to the man who received my application, and done everything he can think of to find the app. No sign of it... This call takes place at 3:12 according to my call log, so I drive to the office pick up a new form, go home to get the kids off the bus. I am frantically filling out this application, by the time the kids get off the bus I am ready to storm the office. Off we go. I walk up to the desk and the guy takes my application and says thank you. When I don't leave he asks if I need to see someone and I tell him that until the application is in the hands of the person who will process it I am not leaving. So he looks up who that would be and guess what?!? He says "mam we have an application on file through Healthwave, received on Sept 30th It was processed at 3:30 today. Is this for something different" I just through up my hands and told him to shred it. I have the big kids with me of course and they follow me out to the van where I scream a good reliving scream. Olivet says what was that for so I spout off something about incompetent Government people and proceed to cuss the government for a good mile or so...

Funny part.
We stop by Dillions to get a few things for dinner and Jason calls and asks me to get him some allergy medicine. So we stop by the pharmacy counter and being that I had not purchased allergy meds there before they ask for my drivers licence. Olivet asks "why do they want that" I told her that bad men have made it so that mommy has to tell the government when she buys daddy allergy medicine. Olivet in her loud boisterous voice says "THE GOVERNMENT!!! Who IS the government?" So all the little old people waiting on their prescriptions laugh and the staff is laughing, and I am laughing. But poor child really didn't know who the government was because they just made mommy mad at 500 Van Buren, and now they were at Dillions...

I know...

2009-10-03T14:45:00.000-07:00

I know that life is not easy...

I know that there is more love in my house than can me measured...

I know Infantile Spasms is a terrible disease...

I know no one around us understands...

I know someday Avangeline will walk...

I know I need more sleep...

I know the Lord will continue to bless our family...

I know that crying does not fix any thing but is necessary sometimes...

I know I can't do this on my own...

I know that Avangeline can be healed, I pray that it is the Lords will to do so...

I know that with everything I have learned... I still don't know much

Just some pics...

2009-05-07T13:26:00.000-07:00

I haven't updated in a while, as you may have noticed... Here is a picture montage of our last month.

Avangeline got glasses, she is doing so well with them. We were told that if she truly needed them she would wear them and not mess with them, if not she would pull them off. She wears them like a champ! We have seen great improvement in eye contact, and she plays with anything she can get her hands on.

Olivet had Kindergarten round up! She is such a social bug, she made new friends in the short amount of time we were there. She wanted to go the very next day, it took her about a week to realize that she would not get to go till the fall. I did sign her up to do the Boys and Girls Club summer camp, so that should make her feel big.

We had new windows installed throughout the house, they are wonderful and beautiful! They have a ledge on them and the cats love it. If you come to our house you are likely to see them sitting in the window watching the neighborhood. My mom is making the girls new window coverings, they wanted their window to be pink and sparkly. I modified the coverings in the front room, and the kitchen has always housed my balls, so now I just need to figure out our bedroom...

Missing something???

2009-04-01T15:58:00.001-07:00

Ezra lost his first tooth today!!!! So as the story goes... as told by Ezra himself.

This afternoon during math time, I was playing with my loose tooth. I wiggled it froward and then tried to twist it. I twisted it one way and then the other and it just fell out on to the floor. So I picked it put off the floor and went to the nurse. She put it in a tooth holder for me to take it home.

So I came home from work today and Olivet came running out to the van to inform me of the lost tooth. I was so excited I was beginning to wonder if we were ever going to loose a tooth. You can already see the new tooth coming in. A new milestone at the Shove household. So now tonight we will have to wait on a visit from the tooth fairy...

I think I am more excited than anyone... This is a big deal right???

2 new additions to the family...

2009-03-14T16:16:00.000-07:00

We have cats!!!

Yes Cat"s"

We adopted 2 Bangled Cats from a friends grandmas' husband... There were allergy problems at their house so, and I have always wanted a cat. Jason has always said that he would only allow me to have a cat if we got a bangled cat, well that was with the assumption that we would NEVER be able to afford one.... Well, now I have 2.

Meet,

Simba

Simba is a male cat, and he is a lover... He sleeps in our bed, sits in our laps, always wants to be petted and drool es when he starts to purrrrrr.....

Dee-Dee (given name Carma, how she got Dee-Dee I don't know)

Dee-Dee is a female and is a loner, she makes her voice heard when she wants something, but for the most part would prefer to be left alone... She has the best markings of the 2 although it is hard to get a picture of this priss.

Her fur is sooooo soft, but getting a feel of it is rare. So far the only person that can touch her on a whim is my dad, she likes him a lot. The longer we have them the more comfortable they become with our household. She is coming around so we will just have to be patient with her.

These 2 are litter mates, and are 5 yrs old, so they have an excellent demeanor... We are enjoying them (most of the time).

So if you thought we were crazy before... Now, I may be on my way to being the crazy cat lady...

Good Day!!!

2009-03-07T19:32:00.000-08:00

So just when you think it can't get better... Today was an awesome day, we enjoyed ALL of it.

I woke up in a wonderful mood, (maybe because I didn't have to go to my non job today)... The weather was wonderful so we decided to go to the zoo. We have a family pass that sets to expire at the end of the month so we figured we had better get a few more trips in.

Everyone had a good time. It seems in the past that we always go when all of the animals are taking a nap, but today they were all active and fun to watch. Avangeline did very well she seemed engaged in what was going on and enjoyed the outdoors.

Another high point of the day... Avangeline rolled over today back to front! It has been months since we have seen her roll, we were so excited!

Our only struggle for today is Avangelines eating... One of the side effects of her Topamax is loss of appetite, and well she will not eat anything. She has been on this med since Aug, and we have had no issue... Now that her brain is going to work, it is going to have drug side effects I suppose. Of course this has to come up on the weekend when we can't call the Dr. So first thing Monday we will see what they want us to do...

Life sucks and then you die...

2009-03-05T16:18:00.000-08:00

Ok so I'm not one for throwing myself a pity party, but grab your hats, party on. I am at the point I don't know how much more I can endure... In the last year I have had to deal with more than most in a lifetime. I feel I have coped relatively well, and was starting to resolve within myself our reality and see light at the end of this tunnel.
Saturday I was sleeping in, Friday I was not feeling well and had been to the Dr, so I was getting some much needed sleep. Jason comes running into the room and tells me to get up Avangeline is smiling and laughing. Praise the lord, what a joy. I have been waiting a long time for that smile. We were on a high all weekend long.
Monday... I get to work and go about my day normal, all except for opening my e-mail. When I realized I had not checked it I opened it to find a note from the head of HSBC North American CEO, in short it stated that Consumer Lending (that's who I work for) was being shut down. Ok if that doesn't suck enough, all of the sales staff was let go effective 1:00 pm. They get paid till April 3 and then get a severance package. I am not sales staff... So I get to work until they decide what day exactly we will shut down. We have to give our customers 30 days notice, and I do not have a sign to hang on the door as of yet. So this is going to drag out... I could really use 30 days off with pay. Somehow sitting in that office empty and with all the looming dume SUCKS. Top that off with customers who are worried about how they are going to make there payments, mail them in... No brainer, but explaining that to them is an ordeal.
You know how you have this plan in your head of how life is suppose to go, hopes, dreams, expectations... Why can't I have at least one??? Have I done something so terrible in my life that I deserve all of this? Will it ever end??? Will I come out better on the other side, or will this be how things go forever???

Getting rid of the gray...

2009-01-29T17:14:00.000-08:00

I have been home with Avangeline all week, Monday I took her to the dr because she was conjested and I figured if she has no immune system I should get her checked out. Well as it turns out she has RSV and pneumonia. Poor little girl can't catch a break. Although her being sick really stinks it has been a very eye opening week.

First as I drove her to the ER at Children's Mercy in KC, my cell phone was about dead so I had to unplug the satellite radio to charge it. I was listening to Calvary 88, and heard a song that was new to me. The Motions by Matthew West, it goes like this:

I don't wanna go through the motions don't wanna go one more day without Your all consuming passion inside of me I don't wanna spend my whole life asking,"What if I had given everything,instead of going through the motions?"

As I walked into the ER I saw 100+ sick people... I thought I was going to have a panic attack, (I wait in the car when I take her to her family Dr.) I had no choice but to wait in the same room as all of these people. I checked in and asked what I should do as she is not to be exposed to illness given her current state. The nurse pointed me to a little hallway that was void of people, they had folding chairs set up but no one was sitting in them, so we went to the very end and sat down. I began praying that there would be a barrier put up around my little girl to protect her form all of the germs that were festering in this place, and that we would be seen quickly and not have to sit for too long. Other families entered and as they checked in they were being warned that the wait was 6+ hrs. After about 20 mins they called our name and after taking her temp, weight, and a good once over we were taken to a private waiting room. We were going to bypass the wait, and be seen as soon as a bed was available. While we waited we were joined by Hailey, she must have been 12 or so and she was having appendicitis. So they were also getting bumped to next in line. Hailey is very fond of babies so she was interested in Avangeline. Poor girl was sitting and waiting on a bed so that she could go into surgery and have her appendix removed. They had given her something for the pain, but her body was not happy. There was lots of puking going on... I don't deal well with puke... But in that room with close quarters, I was not phased. I gave her baby wipes for her face, and again right there I prayed that her little body would rest, and that her discomfort would go away. Within 5 mins she laid her head on her moms shoulder and fell asleep. Not long after that they called our name and we gathered our things. As I walked out of the room I turned to her and told her I would be praying for her.
About 4 hrs later we were able to leave the hospital and when we got in the car, the DJ was talking about prayer. He made the comment that Christians as a polite gesture will offer prayer as they part ways with someone, and then rairly do. It stopped me in my tracks. I put the van in park and prayed right then and there for Hailey. Ever happen to you??? I think it happens more often than any of us would like to admit.

Being at home all week I have watched a lot of T V as well. Oprah had an evangelist on who had been caught up in a gay sex scandal. He was married with children, and he was telling her that yes that was a part of him and that he had been forgiven and that even though it was still there he was not going to act on those feelings as they were sinful. She would not let up on the fact that gay is ok, and if that is the way you were made there is nothing wrong with that. She finally ended the conflict by being ok with him being remorseful for lying. She did not understand black and white, she was ok with the gray...
I also caught a documentary on a gay Christian duo, Jason and Demarco. They were traveling the country, spreading the good news of Gods love. Yes they had beautiful voices, and sounded awesome together. They were preaching about how God love everyone and that because they were committed to each other there was nothing wrong with being gay. You see they don't live a "gay lifestyle", they don't do drugs or have multiple partners. There were church leaders singing there praises, and asking what God thought of how twisted everything is when religion gets in the way. Religion? Black and white, they were ok with the gray...
The Dugger Wedding was on this week as well. Their family supports the idea of courtship,and the couple had committed to saving there first kiss till there wedding day. This was made out to be so strange, such a bazaar idea. Purity is such a foreign concept in our culture. Black and white there it is. With the possibility of a kiss leading to something more, they just kept it to hand holding no gray there.
So all of this has been placed on me this week...
How much gray do I put up with??? How much gray is in my life???

I think one of the greatest challenges in actively living out a relationship with Christ on earth is to avoid the trap of simply going through the motions.
I know what a "Christian" should say. I know how to act. I know how to put up a spiritual front, even if I'm not passionately seeking God. That was the inspiration behind my song, "The Motions". I was tired of settling for a stale faith. God is a God of PASSION. His true plan for our lives is anything but boring. Every day, The God of adventure beckons his sons and daughters to quit going through the motions, and walk into a life filled with passion and wonder. (Matthew West MySpace page)

Also Hope is something that you do, not something that you have. I will work on that next.

Being in Love!!!

2008-08-22T22:14:00.000-07:00

I just got off the phone with an old friend.... She is getting married tomorow, and I am so happy for you Genevieve. We have not talked for a while and it is amazing how good friends can pick up where they left off at any time. Genevieve and I have been friends since the 5th grade and given our age that is a long time!!! So this makes me think of all the weddings that are coming up. Kari and Micheal of course. But just this week we got 2 invitations in the mail for October weddings. Our anniversary is in October, and we are going to celebrate Jason's grandparents 60th in a few weeks. I can remember the first time I met Jason... I knew that he was the one for me. I can remember specific things about what he wore and where we were. And now how far we have come. 9 yrs of marriage, and 4 children later, I am so in love! He is a wonderful man, an awesome father, and my best friend. So for all those who are just staring their journey... Enjoy every minute! Cherish every memory! And never fall out of love.

I LOVE YOU JASON!

About me A-Z

2008-08-18T20:22:00.000-07:00

So Kari is doing ramdom blogs, how about this for fun... I have been having a hard time knowing what to post, as I feel drained with the whole health issue and don't really always feel like blogging about it... So here is my A-Z. I am tagging Kari and Anne to do the A-Z on their bloggs, and then tag someone else.

About me: A-Z
A - age - 29 That's my story and I'm sticking to it...
B - birthday - September 23
C - candy or cake - Candy, I hate frosting
D - dessert you love - Cheese Cake (Jello box kind not the fancy stuff)
E - easiest person to talk to - My best friend Jason
F - favorite song - Understand by Jeremy Camp
G - gold or silver - Silver
H - habit - I chew my cuticles... Groose hu?
I - instruments- I played the flute in school, and even though that wasn't that long ago, I don't remember any thing...
J - job title - Mom, Sales Assistant, and Mary Kay Beauty Consultant
K- kids- 4 Ezra, Olivet, Ivy and Avangeline
L - love or lust - Love
M- married or single -Married
N - next to you - Piles, lots of piles (bills, MK stuff, school stuff, laundry...)
O - one wish - for Avangeline to be seizure free
P - person you called last - My sister-in-law Emily
Q - quotes - Everyone tags their e-mails at work with them, I won't join in, it's a sales thing...
R- reasons to smile - My beautiful family
S - steak or pork - Pork, sausage, ham, bacon, ribs, chops, pulled...
T - turns you on - The smell of saw dust and sweat
U - unique talent - getting my way
V - vegetable - spinich
W - woke up at what time - 1st time 3am, for the day at 6:45am
X - xrays I've had - the only one I can remember is of my head when I was like 5
Y - your favorite color - Blue
Z - zodiac - I am a cusp... but I claim Lebra

Quick update...

2008-06-12T19:10:00.000-07:00

Today Avangeline is 6 months old. She looks so big! We are still working on her smiles, but she was very talkative today. And Praise the Lord, I did not see any spasms today!!! I did not ask Pam and Joe if the saw any, but we have been seeing lots of an evening and we did not see any today. What a 1/2 birthday present!

I also wrecked our van yesterday. It was a bad deal, I made a lane change and smashed into the back of a little jeep. No one was hurt, my arms are bruised because of the airbag, but nothing serious. It is taking the insurance company a long time to process the claim as they are dealing with the Tornado. I guess that houses take prescience over cars. I can totally understand that. Pam and Joe have been so wonderful, they have allowed me to drive their van since the accident. They are such a blessing in our lives, I don't know what we would do with out them. I should have a rental car tomorrow, the dealership has been out for the last 2 days. I will not be posting a picture of the van as I feel like a jerk over the whole situation...

Ezra is loving day camp. He comes home and falls on the couch, they really wear him out. He is getting an awesome tan, I am quite jealous.

The big girls are as cute as ever. Ivy is talking up a storm, and forming large sentences. Olivet has started to dress herself in the mornings. She likes to wear the same things several days in a row, but we have to pick our battles. She has had such issues with independence as far as things like that go, so the fact that she is being responsible for herself is a good thing.

Pray that this is the first of many seizure free days.

Sleep Much???

2008-06-04T15:51:00.001-07:00

Avangeline has this little routine of play time at 3 o'clock sharp. AM that is!!! So needless to say I am a little tired. To top that off we have started flexible scheduling at work so we set our own hours. I decided that I wanted to get off at 4:30 every day, so that I could get home before 6 every night. Well to make that work and still get my 40 I am going in at 7:30. This is somewhat difficult for me, as that requires me to get up and get myself ready before everyone else gets up. So my alarm goes off at 5:30. Mind you I am usually just getting Avangeline back to sleep around 4. So yesterday I had turned off the alarm rather than hitting snooze, I was kind of rushing around to get out of the house and to work on time.....

And well see for yourself.....

I went to work like this. And get this, I didn't even notice till like 3pm. I took a late lunch and went to the consignment store down the street. I had found some skirts that I liked so I went to try them on. As I was putting my clothes on to leave I looked down to put on my shoes, and this is what I saw. I laughed out loud, for a long time. The little old ladies running the shop had to be wondering what was going on. I went back to work and asked if anyone noticed anything strange about my outfit, and the one guy in the office pointed out my shoes. They all swear that until I said something they had not noticed..

June Already?!?!!

2008-06-02T19:58:00.000-07:00

Wow time is flying!!! So Miami... Good news/Bad news...

First off we received an official diagnosis of Infantile Spasms. She has always shown the characteristics of the disorder, but never any of the EEG markers that are typical. So she was hooked up to the video EEG for some thing like 24 hrs and the readings showed the beginning stages of hypsorythmia. This is the marker of the infantile spasms. So that was the bad news, as this is something that if not controlled can be very damaging.

Good news. They started us on a medication that is not FDA approved. It is the first line treatment in the rest of the world, but due to the fact that it is not made in the US, no one profits, so no one is working towards getting it approved... Well anyway we were able to get the drug on a compassion basis. So we started her on the meds right away, and it has made night and day difference. She is still having the seizures, but she is smiling, and cooing, and talking. She is holding her hands in a very relaxed manner on her chest. She is following things with her eyes. She has really come out of the funk we had fallen into. The Dr told us not to expect to see anything for at least 10 days. Well the first day we took it I could see a difference. Praise the Lord!!! We are enjoying getting to know our new little girl. Please continue to pray that the seizures will indeed stop and that complete healing will come to her.

Day 1 of Phase 1

2008-05-20T20:28:00.000-07:00

So we arrived at Miami Children's Hospital at 7 am to check in and have an MRI. We went in and did all of the paperwork, took vitals, and sat in the waiting room. After a while we were informed that the MRI was broken. They had ordered a part and were waiting on it to be delivered. Should be 10 when it is fixed... Little ones who can not hold still on there own, have to be sedated, which means no food for 6 hrs. Now try to explain to a 5 mo old "mommy can't feed you yet..." They went ahead and took us to a room on the floor we would be staying on. Dr's and Nurses came in and took more info, and set us all up. Then we were told the machine would be fixed around 12. It was a pretty rough morning, but the nurse practitioner told our nurse to start her IV, so they took her in and got that going. I was not in the room, but Kari told me that they only stuck her once. The picture above is for Olivet and Ivy, her IV is held in place with a princess. Once they were done with the IV, Avangeline was very tired, she fell asleep. So I decided we would hold out for the MRI, the Dr was ready to reschedule for tomorrow. They finally came to get her and long story short she left us for the scan at 2. Then while she was being scanned we were moved to a different room, and ate some lunch.

The scan took forever!!! I was not able to see her till 5:30. While she was still groggy from the sedation the EEG tech started putting leads on her head. She is hooked up to a EEG machine, that is reading her waves, and is being videoed. We have to push a button any time she has a seizure. This is the hat that is holding all of her leads out of the way. Kari thinks she looks like a Vegas show girl. With all of her other EEG's they just stick the leads on with gel, then pull them off. These a glued on, with stuff that smelled like model glue. I would like to know how many weeks it will take to get it all off... She is now sleeping. Tomorrow we will be having a SPECT. (Google it, I can't explain). Pray that we do not have a repeat of today with the waiting game as she will not be able to eat again until it is complete.

On our way!!!

2008-05-20T20:12:00.000-07:00

As we left Topeka we saw firetrucks on all of the overpasses on I70, then on the last one before the turnpike there was a flag flying. So I had to know what was going on so I called Pam, she has a way of knowing what is going on all of the time, well turned out she did not know but Joe had the info. There is a group of veterans traveling across the US, they started in Washington DC. I didn't catch where they were headed. So no sooner than I had gotten the info on what was going on, we came up on all of these bikes, hundreds of them! It was quite a sight. And one of those goose bump moments. So all the way until we got off of I70 in KC, there were people on the overpasses to cheer them on. Pretty cool...

Our trip went a lot smoother than I ever expected. Avangeline did really well. We had a lay over in Chicago, but it went by really fast. The flight into Miami was long and Avangeling was done being a good traveler. So she cried for the last 20 min of the flight. Then she cried for the hr and a half it took to get luggage, and to the hospital. She was pretty worked up and so I took a shower with her to calm her down. It worked really well, and she passed out shortly after we got out. She slept all night. I wish I would have...

Happy Mothers Day!!!

2008-05-12T05:16:00.000-07:00

What a wonderful day it was! All of the kids made me cards, and Jason made me breakfast, so that started the day off right. Church service was nice, and Avangeline slept most of the time we were there, in the nursery, so I did not have to worry about her. After church we went to Moms house to eat lunch. On the way over Avangeline talked to us, she cooed and giggled and made lots of happy noises. It has been weeks since she has smiled and talked to us. Jason stopped at Sonic to get us drinks and I crawled over the seats to get a look at her, it was the best mothers day gift she could have given me to be able to see her smile. We talked to her and enjoyed the moment. Just like Mary in the sermon, I will treasure up that time in my heart.
After lunch with mom we went home and took naps. Then we headed over to Jason's mom's house to wish her a happy day. The kids played out in the yard and enjoyed the beautiful day.

Avangeline had a very good seizure day, she was very fussy most of the day but she was also gassy. By 6pm I was convinced that she was not going to have any spasms. But around 7 she had a good little cluster. Ezra happened to be holding her, he asked lots of questions later that evening, so this became very real for him. I asked him if it scared him and he just looked at me and said "No, I prayed." Wow! How's that for a reminder of who we need to rely on? Although Avangeline was difficult to deal with, we only had the one cluster of spasms. Praise the Lord!!! It has been a long time since she had a day this good.

We will see what today brings...

Tea Time

2008-05-10T19:22:00.001-07:00

Today was the mother daughter tea at our church. Mom and I have attended this event together for several years. It is always such a nice time that I have been inviting Pam for the last 3 years (I think that's right, Pam?). Pam is our daycare provider and is a very important part of our family. Jason's mom and Grandma also attended for the 2nd yr in a row. Today the tables were set with beautiful tea cups, and the girls just loved them. I filled them with juice and they enjoyed drinking from them. Olivet talked about it all evening. There were 2 speakers and music. The speakers were wonderful, such awesome messages to lift up all of the women of the church. Robin shared Deuteronomy 6:1-9, and spoke of our responsibility as mothers to make God a priority in our homes. God is so evident in our home these days, as I do not know how we could get through this time without him. And so the message today was very fitting.

Avangeline had a really bad night last night. We were up a lot! Poor thing just can't relax, I finally decided this morning at tea that something had to be wrong. As were were getting ready to leave the church I was changing her diaper and I looked in her mouth and she has Thrush, again... So no wonder why she has been so mad. Mom offered to take the girls home so I went straight to the prompt care up by our house, and got her a prescription. She is already feeling better after one dose. Her spasms seem to be getting stronger and more frequent. Although she is resting quite peacefully right now on daddy chest. So it may just be that when she gets really upset they set off, and now that her mouth feels better she is not upset. At any rate the 19th can not get here any faster! We are so anxious to go, and we pray that there are some answers waiting for us there. I want my baby back! I have received all of the information from the hospital on what will be going on, sounds like a full gamut of tests, so it will not be dull. With her being so small, and not able to hold still, she will be sedated for most of them. This is not something I look forward to but we will do what we have to do to get her well.

Keep praying, and thank you. We love you all!

Where has the last month gone?

2008-05-06T19:06:00.000-07:00

Wow it has been quite a while... Things at our house are crazy so there is not much time for anything extra. I am going to try to keep everyone posted as to what is going on with us, it is becoming more and more apparent just how many prayers are being said for us that I want you all to know what it is that is happening.
Avangeline has "infantile spasms". Go ahead and Google because it is way to hard for me to describe. I had avoided the Internet for a long time because everything is so scary, and worse case type stuff. But now this is my reality. I did not want to admit that this was what my daughter had, and for a while in the beginning I think we even had the Dr convinced that this was not the case.
Avangeline has 30-40 spasms (seizures) per day. Most are focused around her sleep, when she is trying to sleep or waking up. Once she gets to sleep she is fine, it is just getting that way that is sometimes a challenge. Also if she gets really upset that can set her off. We don't know if the fact that she is upset sets them off or if she is upset because she is having spasms...
We have tried so many different meds that our Dr wants us to go to get a specialist opinion. So the week of May 19 we are going to be at Miami Children's Hospital. They have very sophisticated equipment, and are one of the best hospitals in the world for neurology stuff.
We appreciate all of your prayers. Every time I turn around there is someone else praying for her. Please continue to lift her up. Pray that travel will be easy, that Jason and the kids will be ok with out mom around, and that the Dr could find a way to relieve our little girl of these spasms.

2008-04-15T15:01:00.000-07:00

I thought I had a picture of them sleeping but I guess I had already put the camera away. I may have been asleep as well and just dreamed it...

Last night we spent about 4 hrs in the emergency room... Avangeline had not been herself all day Sunday and when I picked her up Monday after work, Pam stated that she had been in a very bad mood. She felt clammy to me and when I groomed her hair with my hand her fontanelle (soft spot) felt squishy to me. So that pit of your stomach feeling hit me and I called the neurologist. He had given me a phone number in the hospital, kind of, he rattled it off really fast and I wrote it down. So when I called the gal who answered the phone was shocked "where did you get this number" she asked. She told me she would talk to Dr Katz and call us back. An hour went by and no call, so I went on to MOPS with the thought that if it were life threatening she would have responded with something like "go the the ER you idiot..." So 20 min into my meeting Dr Katz called himself. He asked what was going on and decided he wanted to see her so he told me to meet him in the ER. No rush he said I have calls to make and a kido to see in Peds... So arrangements were made for the big kids and Jason and I headed over to the hospital. They got us right in, and we only waited for Dr Katz for like 20 min. He had them draw blood, and take a urine sample. I will tell you that they hurry around in that ER a lot faster than they do at St Francis. I don't know it is because they are busier or if they just hustle more. Avangeline did awesome, she did not even cry when they took her blood. The lab gal did a good job, and got lots of blood so they were able to do all of the tests that were ordered. Nothing showed up in her blood, so Dr Katz wanted a CT scan, this is her 2nd. It was clear. The only thing they could find was what Dr Katz said was puss in her urine, and he pet her on Amoxicillin.

Current Med List:

Kepra, and Trileptal (seizure meds)

Prednisolene (steroid)

Previacid (for reflux from Prednisolene)

Fluconazole (treating thrush caused by Prednisolene)

Pyridoxine (B6) some seizures are caused by low b6 in little kidos

and now Amoxicillin (possible infection)

There is something fundamentally wrong with giving a 4 mo old this much medicine but I guess if it will fix the problem it is necessary.

So today Avangeline has been in a better mood, although still clingy and having a hard time sleeping.

Please keep praying for her. Pray that the spazams stop. Pray that this will all be over soon...

Picutre perfect!

2008-04-15T08:50:00.000-07:00

Ezra did not have school Thursday or Friday of last week so he went to Pam's house for one of those days. She managed to get an awesome picture of all 4 of them. Now this is a feat as they are constantly picking at each other, fighting over something, or acting a fool.

Rolling Over!!!

2008-04-08T13:11:00.000-07:00

OK this is a new thing for me to try, but I had to share. As some of you know I do not have audio on my computer so I have no idea what is in the background, or what is said. So hopefully nothing embarrassing. Just check out our big girl!!!

Bad hair day!!!

2008-04-07T20:57:00.000-07:00

Last Tuesday we had our 3rd EEG. She did so good, they need for her to sleep to get good readings. So when they were scheduling her appointment I told them that she usually takes a good nap between 9-11 am. So they got us in at 9. She fussed while the tech put the probes on her head, they have to scrub them with this gel that has some abrasive stuff in it, she said her head must be really sensitive, but after that she went right to sleep. It did not take as long as I thought it would. When they had the info they needed they asked me to wake her up, well as you can tell by the picture that did not work. We have heard from the nurse that there is still seizure activity, but that the Dr was very surprised at how good everything looked. So we go Wednesday to see the Dr and find out where to go from here.

Avangeline is doing really well, she has developed a predictable sleep pattern, is smiling, cooing, laughing and as of Saturday... Rolling over! So she is developing quite well, Praise the Lord! We are still seeing her seizures but not as often, continue to pray for complete relief of these spasms. The Lord is at work here.

Packing on the ozs

2008-03-07T05:19:00.000-08:00

We have been weighing Avangeline on Wednesdays, there is a breastfeeding clinic in Hunters Ridge. So from last week we have gained 10 oz!!! This is the biggest gain we have had overall... So now we are up to 9lb 10oz. She is the happiest little thing until 2-3 am gets here and then she is very hard to please. I hope this passes soon as I can only go without sleep for so long.

Everyone here is over all of the illness that has been going around. (Knock on wood). We were hit so hard that I thought we were going to have to fumigate the house. I have been fighting a cold this week, but I am sure that a lot of that had to do with lack of sleep. So now the weather needs to make up it's mind and act like spring so that we can take the kids out to run off there energy. I took them to the park last Friday and let them play for an hour. That night we were letting them stay up past bed time and Ezra came to us about 30 min later and asked if he could go to bed. And now a week later they are balls of energy again.

Mom and Dad leave for a cruise today, I am so jealous... I told Jason last night that I want to go sit on a warm beach and soak up some sun. Can you feel it??? I will have to settle for my day dream. It has been fun to watch them get excited about this trip, I think it is as much of an adventure as a vacation. With them being gone I have had to rally the troops to make sure that all of my children have a point of contact, for their daily activities. Mom and Bob (Jason's parents) have signed up to take a huge chunk of the responsibility. I think Ezra and Grandpa will enjoy some one on one time. Thank you to all who are helping out!

I received my evaluation from work yesterday and one of the things on the sheet that you have to fill out is your career aspirations. So one of the questions is "Are you willing to relocate?" I wanted to put "only if you will relocate my parents, in-laws, daycare provider..." Now that I am back to work it is becoming very obvious just how crazy our live is. And without all of the support we receive just how impossible it would be...

Terrable Two's here we come...

2008-02-23T13:14:00.001-08:00

On Friday Ivy turned 2!!! She was running a fever when she woke up so she stayed home with Ezra and I, but by the days end she was feeling much better.

We just did a celebration with the family, seeing as how everone had been sick. We had planned to go to the circus, and then deceided to postpone our trip untill later in the weekend so that everyone had a chance to feel better. We fixed pizza rolls, chicken nuggets, and pig in the blankets for dinner and had cake. Ivy had this crown that she had carried around off and on all day, and when we said she could open presents she grabbed it and put it on and sat on the floor next to her gifts so proud. She knew that the day was for her and she was ready. We are going to try to go the the circus on Sunday, I think she will get a kick out of the clowns.

Ezra's 6!!!

2008-02-23T12:59:00.001-08:00

It's hard to believe that my baby is 6 yr old... For me it was harder for Ezra to turn 6 than it was to leave Avangeline at day care for the 1st time. Time just flies! Ezra really enjoyed his day. Since it fell on a Saturday this year we had a few little boys over for a play date. Aiden from church and Trenton from school came to play from 10-2. As crazy as this could have been they were very mild mannered. They all played well together, and even included Olivet. We ordered Pizza for lunch and then blew out candles on his cake.

Grandma and Grandpa Thomas as well as Melissa and Hailey stopped by to wish him a happy day. Ezra and dad made Monster cookies for him to take to school. He took them on the Tuesday before his birthday, since Valentines day was on Thursday and he did not have school on Friday. They were very good, and they enjoyed making them together. He wanted me to bring them to school for him so that he did not have to take them on the bus, but when I showed up he did not even get out of his seat. It is so weird to learn all of the new mom rules when we have school and friends. I guess it will only get worse. But we will figure it out together.

Happy Valentine's day!

2008-02-23T11:38:00.001-08:00

We had lots of fun on Valentines, Jason and I do not "celebrate" we both know that we love each other every other day of the year so the expense of the day is something we avoid. We do always try to make it fun for the kids. I have always gone the the dollar store to get them each a balloon, do something fun with the table, and make a meal they will enjoy. They think it is a blast. Grandma's usually take care of the gifts, as they come in the mail I save them up and put them all at there places on the table so they have a stack. Avangeline was not feeling the day, she even had on her cute love shirt, but I could not get a happy picture, this was the best one. Ezra was super excited he won the contence of the estimation jar for that week. Mrs Switzky had put 203 candy hearts in the jar and his guess was the closest at 105. He was so proud. He came home and told me that there were 202 in the bag because had eaten one on the bus, he was keeping track of them for a while, "now there is 200 in the bag..."

Back to work

2008-02-23T11:19:00.000-08:00

I went back to work on Wed the 13th, it was not really that bad... Pam has a family picture for each kids first day in her care. So we all loaded up and headed over to see Avangeline off. She did really well, I think she fits in real well over there. Joe loves to hold the babies so she eating that up.

Jason was so thoughtful he sent me roses to brighten up my desk. With it being the day before valentines, he had to convince the lady at the flower shop that he truly wanted them to be delivered on Wednesday and not Thursday. It was a very nice surprise. I have the most wonderful husband!!! Speaking of I had planned on only working half days for that first week back, and discovered that I had a meeting in Wichita on Friday. I had also scheduled Dr appointments for all of the kids to get there annual check ups. So Jason volunteered to take the day off and get all of the kids to see the Dr. He did an excellent job! The nurses were all very impressed. I know this because in the week following everyone in the family has been sick and we have been talking to them on a daily basis. I think we are all on the mend... I thought that Avangeline and I were going to be in the clear, but we both started running a temp last night. Her fever is gone this morning, and mine is down with Tylenol. Please pray that this is the light at the end of the tunnel.

Snow day

2008-02-07T14:35:00.001-08:00

We woke up yesterday to 7+ inches of snow! Ezra's school called to let us know that he would be out, and I walked back into the bedroom to let Jason know and he said that he was off as well. So we all hung around the house. Jason talked to mom and she told him to have the kids build a snowman and take a picture. After naps and letting the sun get good and warm we deceided to head over to grandma's house and build her snowman in her yard.

Ezra loves to play in the snow so he was rolling around on the ground and throwing snow balls. Olivet is a little priss and she started crying 5 min later because she had snow in her shirt and needed a towl. We got her calmed down, and dad helped her make her own snow ball. It was a good snow ball because it never broke, she would throw it and then go get it to throw again. I don't know how he made such a good snow ball because we were not sure that it would be possible to make a snowman. The snow had blown so much that is was very dry and we could not get it to stick together. Ivy was too funny! She would walk out a ways and then just stand there in the snow, after a while she would get sick of the scenery and holler "I stuck, I stuck." So one of us would go and get her and move her to a different spot till she got sick of being there and we would move her again.

Jason did manage to find a small patch of snow that we could get to stick together. The snowman happened after all. The kids had a good time making him come to life, we used a carrot for his nose and eyes, and rocks for his mouth and sticks for arms. Grandma called when she got home, she did enjoy the suprise. When we got home Dad made us all hot chocolate to warm up. Then I made chicken noodle soup, just seemed like a good meal to have on a cold snow day.

Wednesday was suppose to be Ezra's 100th day of kindergarden, so that moved it till today. It sounds like they had quite a celebration. He came home with a crown and a necklace. They hunted candy kisses, each had a number on the bottom. He said they could not find #52.

I took Avangeline for her weigh in and she is 8lb 6.7 oz so she gain a little over 2oz the last 3 days. Keep it up girl!!! Just a few more days and then Pam can fatten her up...

Super weekend, and Girls Day

2008-02-06T09:24:00.000-08:00

We had a fun weekend at home playing with dad. We stayed in all most of the time although we did go to the mall so that Jason could try on a new jacket for work that they are having the company logo added to. While he was doing that the kids and I hung out in the play center that they have there in the mall. It was jam packed! And kids are quite crazy in there, and parents don't seem to care. One boy was getting pretty rough and went so far as to take his shirt off. Now my kids love to take there clothes off, matter of fact it is the first thing they do as soon as we get home, but you have to draw the line when you are out in public. I was having a hard time keeping track of all of my kids, they didn't play together, so that made it interesting. I was glad when Jason returned and I went out to find a quiet bench to feed Avangeline on.

There was also a merry-go-round outside of the play area, so after they got there shoes back on Dad gave them all a ride. It is very strange how people look at us when we go out into public, I guess not many people have as many kids anymore. It doesn't help that there is always one that can't seem to keep from screaming. Ivy was the culprit this trip. All the way through the mall untill we got to the play ground she screamed, threw herself on the ground, moped behind all the rest of us, refused to ride the stroller, and demanded that she be the one to hold the drink we got for everyone to share. And we always said she was our sweet child. I guess she is turning 2 and we have never really experenced "terrable 2's", we alwas said that 3 was worse than 2, we may be taking that back... She also has deceided that she is not done beeing the baby. Anything the baby does, she wants to do. She want's to have a pacifier now, last weekend when she had her ear infection it keeped her calm and she did not fuss when she had it so I let her be. Now she will walk around crying, "sucky, sucky", I am sure it is just one of those regression things that kids go through when the new baby arives, I'm just glad that it is not potty training.

On Sunday we did our own little supper bowl party. We made a bunch of junk food, and just let the kids sit at the table and pig out. We did our share of pigging out as well, but the kids thought it was great. Ezra and Olivet made Pig in the blankets. They were gormay! They put cheese inside the hotdog and then rapped them in cressent rolls. I explained to Jason that when we had pig in the blanket as kids they were made with refigerator biscits, and there was no cheese. The ones they made were so much better. I may just make them for dinner some night, I liked them so much. Jason was so pleased with the outcome of the game, he has been a Patriots hater for a long time. I think it was the first year that I watched the entire game, so it must have been exciting.

Monday, was very uneventfull.... I did take Avangeline to be weighed again, and she was 8lb 4.4oz so she gained 2.4 ozs and they were pleased. We are suppose to return again today, but I don't think we will make it.

On Tuesday I deceided to keep Ivy home with me, just so that she could have some alone time. She managed to pull all of the wipes out of the box, first thing while I was nursing Avangeline so I questioned my decision right off the bat. We watched Ezra get on the bus, and took Olivet to school. Then we played at the house untill it was time to go back to get Olivet. I really think Ivy enjoyed being alone with mom... Or as alone as you can be when Avangeline is always there. After we picked up Olivet we went and had lunch with Dad. He was setting fictures in a new house, Olivet was confused as to why daddy was at a house and not at work. There was no carpet laid yet and so the girls had a blast stomping around the house.

I was supprised that with all of the excitement they actually ate their lunch.

So after lunch and a little more running around Jason's boss called him and we were busted... The girls were so loud that he could hardly hear, his boss wanted to know what in the world was going on. So I quickly loaded them up and took them home. Jason did not get in any trouble, he is mandated to take a 1/2 hr lunch, but that was a good reason for us to go home. They ran off enough energy that they all took good naps when we got home.
They got up in time to watch Ezra get off the bus.

Then last night we went to open house at Ezra's school. They were having a chillie feed, so we ate dinner and saw Ezra's room and all of the projects they have been working on. He has a beautiful sunflower that he painted, so we may have to frame it to add to Grandma's collection. After we has seen all we came to see, Ezra walked through the entire school checking out room after room. It was like he said "Well it's open house..." I wondered if he had ever had an opporunity to see the rest of the building.

8lbs 2oz

2008-02-01T15:41:00.000-08:00

We went to the breastfeeding clinic today to hold up our end of the deal with the Dr, and Avangeline has gained 6oz since Monday. Can't beat that!!! They wanted to know what we were doing, and when I told them that we were keeping status quo they seemed baffeled. We have deceided that she got Studer jeans and is going to be skinny. As you can tell from the picture she is a happy little girl. We got our smile and she flashes it often. We have not got a full on grin yet, but you can sure see the happy on her face. The big kids stayed with Pam and had lunch while I took her to be weighed. Ezra did not have school today do to teacher training. He is out a lot this month, he even gets a 4 day weekend for his birthday. Any of us would think that was cool, but with his birthday being on a Saturday it kind of screws up treats at school. When I returned to pick them back up we stayed for a while so that Pam and Joe could love on the Baby. It won't be long before she is staying with them full time. I have to go back to work on the 13th, I have so enjoyed my time off with her and am not looking forward to going back very bad. I just don't know that I like my job anymore... But who really wants to go to work everyday anyhow? I guess I'll just have to suck it up.

Please leave us comments, we are curious who is checking in.

Free at last, free at last, thank God, we are free at last!

2008-01-30T17:19:00.000-08:00

What a time we have had the last few days!!! Friday night Ivy's ear started to drain this fluid tinged with blood (sorry if TMI), she has been in rare form for a week now. So I called the Dr hoping he would just call us in a RX, I did not want to go the the ER on a Friday night... We did not get to talk to our regular Dr, but he was willing to call in some ear drops. They got us through the weekend but I did want the Dr to look at them as she has had several infections since her tubes were put in. So Monday we went to the office and while we were there they asked if they could weigh Avangeline. They have been concerned as she is not gaining weight. So we put her on the scales and in the past week she had only gained 1oz...

So the Dr told us that he just could not stand by any longer with her not paking on the pounds, so he asked us to take her to the hospital to do a "failure to thrive workup" He is concerned that she will not have proper brain and eye development if she is not gaining weight. I told him that it would have to wait till Tuesday because I would have to get everyone situatated. So Tues am we checked her into Stormont-Vail and they took blood, urine, sweat and did an eco on her heart.

Then they chked her vitals evey 4 hours, including all night long. Every nurse who came in the room, wanted to know why they were checking vitals on healthy baby. Preaching to the choir! So Wed Morning the Dr came in and stated that all of the test were ok and that she did not have any problems that they could find, but that they wanted to see the gain weight so they wanted us to stay for another day. I almost freaked out on her, being in the hospital SUCKS!!! I feel so bad for those parents who have sick kids where the hospital is there reality, a person can go crazy real fast. I talked to anyone who would listen to me that there was nothing wrong with my child and finally by 4 the Dr came back and told me that she would comprimize with me. She let us come home and I agreed to come back every 2 days and have her weighed. We will continue on this plan, and if she continues not to gain they will put her back in and run more detailed tests. So for now all is well and we will work on fatting up our little girl. Here is a picture of my healthy little girl, in the hospital crib she looked like she was in jail...

We are going to try a blog.!?

2008-01-27T15:10:00.000-08:00

Welcome! I have been reading several blogs from some of our church members for a while and deceided it was time for me to set up our own. I have not been doing a very good job of sending out e-mails of pictures, so this way you all can check in and see how all is going. My computer crashed in December when the ice storm hit, the day before Avangeline was born, and with Christmas and all it took me a while to get it fixed. With that all of my programs are gone so I enter the world of blog...

So check in often and enjoy the pictures!