Fields Triplets

iPhone Photo Dump

2012-02-09T14:49:00.000-06:00

Not much new going on around here. Still ~~patiently~~ waiting for Anna's power wheelchair to arrive. It should be any.time.now. I haven't taken any recent pics of the kiddos, so an iPhone picture post will have to do for now ;)

Anna deep in thought w/ my glasses on

Hipster baby

Silly girl

Justin showing off his picture he made! Thanks Ms. Stef for sending it!

Justin and Anna at Sesame Street Live

Anna was so enthralled w/ the stage and lights!

Justin during intermission

Anna, Justin and Mommy

Anna ready for a Dr. appointment

Camryn and her bruised eye- from running into the highchair leg

You can never be too safe!

For as much as she falls down, a helmet is almost needed

He fell asleep w/ the iPad in his lap

Anna standing on her trampoline :)

I suck at posting

2012-02-05T10:02:00.001-06:00

I try- I really do, but I'm just busy and then when I do have a free second to blog, I use it for sleep.

The girls had Rehab Clinic appointments on Thursday. From that appointment, Anna has an appointment with the Spastisity Clinic April 5th to discuss/see if she would be a good candidate for SDR Surgery. The whole prospect of that scares me SOOO much, but I can also see it helping her so much. We'll just have to see how it goes. If you want to read more about the surgery, you can find the link to St. Louis Children's Hospital here. She will also be getting new DAFO's (leg braces) and will be fitted for a pair of Benik shorts which can be found here.

Ayva has been having a lot of clonus lately so she will be starting a new medicine called Baclofne (I don't think I spelled that right) She is only on a small dose right now and it will increase next week. So far she hasn't had very many shaky-leg episodes that are unprovoked, like she usually does--so that's good. She will also be fitted for a hand splint for her right hand. She keeps that hand fisted most of the time and the muscles are becoming too tight. OH, and I feel so terrible about this, but BOTH of Ayva's hips were out of place when we got there! I had no idea! She hasn't cried or acted like they hurt in any way! So she popped them back in (easily) and she and Anna both got hip x-rays before we left. Ayva will see the Orthopedic surgeon on April 16th to see if they want to do anything for her hips.

So....it was pretty information filled, but I think I got some good news out of it all. I'm hoping these next few appointments will give us more hope and more answers!

Skinny Buffalo Chicken Dip

2012-02-05T09:53:00.000-06:00

With WW points included!!!!

Skinny Buffalo Chicken Dip 4 WW points per serving
Serves 10

2 packages of Fat Free Cream Cheese
1 c. Fat Free Ranch Dressing
1 c. Franks REDHOT Wing sauce (or any other buffalo sauce)
2 c. Fat Free shredded Cheddar cheese
4 cans canned chicken

Mix cream cheese, dressing, wing sauce and chicken together. Then add half of the shredded cheese and mix thoroughly. Put in a baking dish and top with remaining cheese. Bake at 350 for 20-30 minutes.

To save on points, eat with celery sticks! :)

Recap

2011-12-28T16:34:00.000-06:00

Christmas was....as was expected. Justin was so fun to watch this year. His little eyes just LIT UP seeing what Santa brought him! Four is a great year for seeing them understand what happens during Christmas. Here are a few pics:
Santa came to our house to visit!
Justin hugging Santa

The whole gang w/ Santa (Camryn was not thrilled)

Ayva and Santa

Justin seeing the presents right when he woke up on Christmas morning. He was so happy he just flopped to the floor ;)

Camryn was trying to open everyone else's presents! LOL

Anna was all about ripping the paper :p

Justin got an Angry Birds bouncy ball and bounced on it all.day.long~

We all had a good time and I'm just glad I got to spend another year with my wonderful family.

My teeny, tiny baby is ONE today!

2011-11-23T09:15:00.001-06:00

Ok, she isn't teeny tiny--but she is to me (and will probably always be). Last year, the 22nd I had the flu--which was awful. Then the 23rd, I woke up having contractions, but decided to wait until my Dr. appointment at like 10:30 or something. By that time I was miserable. They kept poking my belly and making me want to punch someone. Luckily I hadn't eaten since the 21st, (because of the flu) so they scheduled my C-section for later that day. I went home, got ready in a hurry and we made it back to the hospital w/in the hour. By the time they were ready to wheel me into the OR, I was already dilated to a 7!!! Anyway, about an hour after that Camryn Paige was born!

She was 7lbs 7oz and perfect. I had no idea what I missed when the trio were born, until I saw her for the first time--heard her cry for the first time. It was magical and just thinking about it again gives me butterflies in my stomach. It was the best feeling in the whole world.

We stayed in the hospital for 2 days (that's 2 less than usually c-section patients) and left ON Thanksgiving Day 2010. All would have been golden, if the flu hadn't passed on to everyone else in the house (my mom included). What a pukefest that was.

Anyway, now it's 12 months later and she is so big! She can walk, crawl, wave bye-bye, shake her head yes and no. She can also say Hi, Bye-Bye, Mama, Dada, and Ba-ba. I couldn't be prouder of her.

Here are her monthly pics--
1 month old

2 months old

3 months old

4 months old

5 months old

6 months old

7 months old

8 months old

9 months old

10 months old

11 months old

12 months old!!!

Birthday Party Post

2011-11-22T20:16:00.001-06:00

Saturday we had a family birthday party for the triplets. Fun was had and cake was eaten. Here is a pic of the three of them and me ON their actual birthday.

Here are a few of the pics from their party.

Anna's Cake

Ayva's Cake

Justin's Cake

Ayva, Justin and Anna

Anna getting sung to

Ayva getting sung to

Justin getting sung to

Justin blowing out his candles. (He's the only one who could do it himself)

Anna loves cake. :)

Justin loves sugar fondant

Ayva getting a small taste of cake

Ayva with all of her lovies she got

Anna and her new Trampoline!!

AND tomorrow is Camryn's birthday!!! I can't believe she will be ONE tomorrow....I shall post about it tomorrow!! :)

Oy....Tomorrow I will have Three 4 year olds....

2011-11-14T16:40:00.001-06:00

I seriously feel like they should NOT be 4 yet, but at the same time I'm thinking, man....each year older they get I age by 10. It's been a really rough 4 years, full of ups and downs (mostly downs). We've struggled with them being born early, having NEC and Strep B infections in the NICU. Then the girls w/ their brain damage, and then the biggie- Infantile Spasms. Then the Cerebral Palsy diagnoses....Now Ayva is still struggling with seizures still, and both the girls are still so behind developmentally. It has been rough to see the life you imagined for your kids (and yourself) day by day slipping away and being replaced with one you never dreamed you would have to cope with. Now, dance classes, going to the park, and even going to (a regular) school has been replaced with doctor appointments, therapies, and special needs schools.

I've also become to hate some of the things I thought weren't so bad before-- like the saying "God only gives you what you can handle." Just because I can handle this (I really can't) doesn't mean I want to, you know? I'd rather be weak and not have to watch my children suffer on a daily basis.

I'm also a little shocked about my "friends". I thought I had some good friends who really were there for me. As soon as the triplets were born, a few (almost instantly) distanced themselves. I guess I can understand that it might be overwhelming for someone who doesn't/didn't have any kids at the time to be a little apprehensive at the time--but I stick to the saying "A true friend walks in when the rest of the world walks out." and I really feel like a few of my "friends" walked out the day the triplets were born. Which is sad.

Anyway, enough of my sad over-dramatic ramblings......Tomorrow is the day- B-Day. Hopefully I will have time to post a birthday post, but for now I will post a few pics of the trio's first few years!

1 month old- still in the NICU (Anna, Justin, Ayva)

The car ride home from the hospital (Ayva, Justin, Anna)

2 months old (Anna, Ayva, Justin)

3 months old (Justin, Anna, Ayva)

4 months old (Ayva, Justin, Anna)

5 months old (Anna, Justin, Ayva)

6 months old (Anna, Justin, Ayva)

7 months old
add pic

8 months old
add pic

9 months old (pink-Ayva, Justin, yellow-Anna)

10 months old (Ayva, Justin, Anna)

11 months old (Ayva, Anna, Justin)

1 year old

1 1/2 years (Anna, Ayva, Justin) I hate this picture because it shows how awful Ayva feels on the awful drugs for IS :(

2 years (Anna, Avya, Justin)

2 1/2 years (Anna, Ayva, Justin)

3 years (Anna, Ayva, Justin)

3 1/2 years (Anna, Ayva, Justin)

Nothing much going on

2011-11-11T09:01:00.001-06:00

Our lives become pretty routine here at the Fields house when we don't have anything special going on. The girls go to school, Justin and Camryn stay home with me and we either go grocery shopping or stay home and get some house chores done. REPEAT. But, November is proven to always be a super busy month. First, there is my birthday (yesterday), then the Trio's birthday is on the 15th--I can't believe they are going to be 4 this year!!! and then Camryn's is on the 23rd and I REALLY can't believe she is going to be one! THEN, it's Thanksgiving the day after Cam's b-day (and also Big Justin's Mom's B-day). Then there is Camryn's party on the 26th and don't forget Black Friday(I really want to go shopping this year!) Usually I don't go shopping on BF, but I guess now that I'm old...(27) I feel it's necessary to get some holiday shopping done on this day. It just sounds fun! I want to (if we have the money to) get most of the kids presents and our parents presents done early. I HATE procrastinating. I want them bought and wrapped so I can admire them under our tree (which I would put up before Thanksgiving if I had a say in it......or if I could get it out of the garage by myself).

Anyone have any suggestions on BF shopping? What stores to hit early?

And you all know I don't post anything w/o a picture, so here is a few of Justin from the other day. Hopefully I can get the kiddos to cooperate today and get the trio's 4 year pictures! Then this weekend, I have a photo shoot with the beautiful Ms. Quinn for her 6 month pictures and then I'm hoping to get Camryn's cake smash 1 year pictures! I have to look up a milk/soy free cake recipe first :(

Here's Justin:

I'm back!

2011-10-31T13:06:00.000-05:00

Whew! I've been gone a while, but not because I didn't want to post--I did want to. My keyboard broke and I had to wait to get a new one! It would have been really hard to post with no keyboard. Luckily Justin brought me a borrowed one from his work! Thanks honey! :)

Today is Halloween!! YAY! On Saturday, my mom and I took the kids Trunk-or-Treating at my cousin's church. I dressed them like ZOMBIES! They were SOOO cute! Here are the pics I took of them:

Camryn

Justin (and his scary zombie face)

Anna

Ayva (not a very good pic. my flash was dead)

Also Camryn turned 11 months old! It seems like just yesterday that she was born. I can't imagine that next month she will be ONE!!! Yikes! Here are her 11 month pics:

Just for funsies!

2011-10-10T19:17:00.001-05:00

We did a craft today--(Justin called it a "Creepy Craft" because it was in a Halloween Creepy Craft book). It was a paper mustache and it was SO.FUNNY! I put it on everyone and then took their pictures.

Anna

Ayva

Justin

Camryn

Fall is finally here!

2011-10-08T09:08:00.001-05:00

Help Find Baby Lisa Irwin!

2011-10-05T09:32:00.001-05:00

This happened near my house. She is the same age as Camryn. I just want to help find her, so here is the story on our local news.

http://www.fox4kc.com/news/wdaf-authorities-continue-search-for-missing-baby-20111005,0,6273053.story

Picture post

2011-10-03T17:12:00.000-05:00

Not much going on here. Camryn is either reacting to the strawberries I gave her last week or she needs to switch from Nutramigen to something that doesn't have ANY milk/soy. We have to wait a week and then call the Allergy Clinic back. Yay. The kids, my mom and I went to visit their Ginny (Granny) and it was such a nice day I took some pictures! :)

And then we went outside the other day-

My little baby is 10 months old today

2011-09-23T13:09:00.000-05:00

It seems like she was born yesterday... It's strange how babies go from looking like this one day

To looking like this the next.

She is SO big. She nods her head when you ask her things

She waves and I *think* she says Hi. She can crawl and stand, and climb! :)

Her eczema is SO.MUCH.BETTER. We've taken out all her milk/soy products and she has only had a few setbacks (with strawberries and peaches-- and Justin giving her a piece of chocolate) but she hasn't broke out into the horrible, whole body consuming rash that she once was!

I'm going to take her 10 month pics later today and hopefully I will get a chance to edit them soon! :)
OK...here they are:

We played hookie...

2011-09-21T14:05:00.001-05:00

Yesterday was such a lovely day and my mom had the day off from work, so we decided to let the girls play hookie from school and go to the park. Everyone had fun, and I got a few pictures. I think it went as well as expected for the two of us with 4 kids and only one of them can walk :/ Anna and Camryn loved the swings--but when it was time to get Anna out of the swing it was a bit of a problem. She tends to keep her legs locked when she has her braces on and my mom couldn't get her out! Then I went over and tried to get her out and was having trouble! Then a very nice lady (who didn't speak any English) came over and helped me. It's sad when you are having so much trouble that a stranger feels the need to help. Oh well... Anyway back to the pictures! :)
Camryn

Anna

Justin

Ayva (she wasn't really in the mood for a photo shoot)

And one of all of us

Oh- I almost forgot. I gave Camryn strawberry puree yesterday in her oatmeal and she had a reaction. Boo. I guess we'll add that to the list of allergies :(

Woah.

2011-09-16T22:16:00.001-05:00

WELL... I called to get Camryn an allergy appointment due to the horrible eczema rash she has been sporting for way too long. They had a cancellation and could get us in on Wednesday. I took her and they agreed that it is definitely something and decided to test her blood for a milk/soy allergy. After 4 hours in the doctor room and the outpatient lab (that's a whole nother story as to why we were there so long!) We left w/ some skin care routines in mind and they said I should call on Monday for the blood test results.
They called me on Thursday and said she does in fact have an allergy to milk and soy. Great- that's one more thing I need to worry about. Anyway they tell me to switch her to Nutramigen, not to feed her anything w/ milk or soy and to put some medicines on her as prescribed. Today- Her skin seems less rashy and she is less itchy. Here is a pic of her in her long sleeves, hat and tights to keep her medicine on

And here is a pic of one of her rashy-ier spots that I took on Wednesday at the doctor.

And one where you can see the redness around her eyes and under chin around her neck.

THEN- Thursday we had a follow up appointment for Ayva at the Neuro. She weighs 22lbs. which is really, REALLY small for an almost 4 year old. They are increasing her calories and adjusting her Keto Diet to help w/ weight gain and seizure control. She is still having about 2 seizures a day, so hopefully when we get the new formula in the mail, we can get those last few seizures to hit the road. She was in a pretty good mood that day- smiley as you can see

Hopefully things get better from here on out--because I'm seriously tired of one step forward, ten steps back.

JazZoo!

2011-09-10T21:07:00.000-05:00

Tonight the whole family went out to the zoo! They were having an extra special night of activities called JazZoo and it was REALLY fun. The weather was nice- it rained a little, but not much- and there was free food and drinks! (Thanks to Kelly for giving us the tickets!) They had face painting and Justin and Anna each got their face painted! The lady asked Justin what he wanted on his face and he said "A zombie" and she asked him if he wanted to be a animal since we were at the zoo and he said "No, I want to be a zombie". So here he is! :)

Anna wanted to be a fairy--

Zombie on the carousel

And a few videos of the new polar bear exhibit! It was awesome!

Hello again...

2011-09-07T11:30:00.000-05:00

Hi all. I have been a serious slacker in the blog department. 3 year old triplets and a 9 month old keep me really busy. I will update you all on what's happened since I stopped writing and then hopefully I will keep it updated.

The big girls started school last week! They are already doing so well!! Here are a few pics of them waiting for the bus.

Anna is doing GREAT walking in her walker there. I got to go and watch her the other day and I cried I was so happy to see my oldest girl walking!! Here is the video I got of her
(add video)

AND Anna should be getting a power wheelchair soon! We are so excited! I can't wait for her to get it and figure out how to get around in it! She wants to go SO badly. There is a loaner at the school and we should be ordering hers soon!

Anna has also been talking up a storm! She can say pretty much anything you ask her to say and now she is saying things like "I wanna go" and "I wanna go outside" ALL BY HERSELF! No prompting from me! She is also doing really good at feeding herself now and I couldn't be prouder of her!!!

AYVA. Ayva is doing pretty good. We gave her her own "room" in our room the other day. It is much more quiet and we are hoping that it will reduce the amount of seizures she has. Ayva's seizures are now triggered by sound. Well, I think the sound scares her, and that triggers a seizure. Either way a quiet room is better for her. I think she truly loves it because when I put her in her bed for the first time in our room, she instantly fell asleep! She is doing good at school so far and I hope that we can get these seizures under control soon so she can start catching up to her siblings.

Justin is....well Justin. He is so smart and funny and now he is at the stage of pretending. It's so fun to see him want to play doctor or pretend he is a superhero. I love it. He is a great big brother.

Camryn, my little chunky monkey is NINE MONTHS OLD! I can't believe it!!! Last time I updated the blog she was only 5 months! She is a crawling, moving, getting-into-everything ball of energy. Yesterday she even stood by herself and took a step!!! She is a great baby and is always happy (unless she's hungry). Here are a few pics of her "month" photo shoots!!

6 months

7 months

8 months

9 months

Hello...

2011-04-27T07:10:00.003-05:00

Well another month has gone by and I've neglected to blog....such is the life with 3 year old triplets and a 5 month old baby!!! Yep, she's 5 months old now!! Here are her 5 month pics:

And here are a few new photo's of everyone!

Anna

Ayva

Justin

Camryn

I'm a horrible blogger...

2011-03-26T21:34:00.004-05:00

Geeze...I just can't seem to make posts very often. Sorry. It just seems like we are trying to live day to day and we are struggling even at that- so there's not much time (or effort) for blogging.

I'll try to do better...

Anywho, Camryn is 4 months old now! I can't believe she is getting so big so fast! Here are some pictures of her 4 month photo shoot!

And I got a few pictures of the whole gang together:

Other than trying to get my photography business started, walking in the Epilepsy Awareness walk tomorrow, and daily life, we've been pretty boring...no news is usually good news. Ayva is still having noise induced seizures, Anna is still trying to walk, Justin is still Justin...LOL. Camryn can roll both ways and is holding her head up really good now! I will try to post a video of her being cute soon!

That's about it for now...if you are still a reader, thanks for sticking around...

Camryn's 3 month pictures!

2011-03-06T16:47:00.003-06:00

Camryn turned 3 months old on Februray 23, and I decided to do a little photo shoot of the little diva. Here are some pics:

Valentine's Day Pics!

2011-02-02T18:49:00.002-06:00

Today- since we are snowed in beyond belief- I decided to try and take some Valentine's Day pictures of the kiddos.

Here are my favorites:

Justin

Anna

Ayva

Camryn

Camryn Pictures

2011-01-27T10:04:00.003-06:00

Yesterday I took some pictures of Cam and they turned out SO.FRICKIN.CUTE.

Here they are:

Camryn is 2 months old!

2011-01-24T07:18:00.002-06:00

Camryn's 2 month birthday was yesterday! :) She is getting SO big and she's finally letting her mommy sleep a little more than 3 hours in a row. Last night she let me sleep from 10:30pm-3:00am.

Here's her official 2 month picture

And here are a few of the outtakes ;)

As you can see she wasn't in the mood for a photo shoot.

Hello again!

2011-01-21T18:32:00.002-06:00

I've been super busy and have been neglecting the blog. Sorry. There isn't much going on around here. The kids like school--even though the didn't always (Justin was puking on the bus and Anna cries every time she even SEE's the bus). Anna still cries but Justin loves it now. Ayva is a good girl and does her work while she's there. She is still having some "thing" that I think might be a seizure, but I'm not sure. She freaks out every time a loud noise scares her. I've asked the Neuro about seizures coming on from sound and they aren't very common, but can happen I guess. I'm going to call and get her another EEG and and appointment for him to see her soon.

Camryn is doing great also. She is getting so big and chunky. Here is her first smile (that I caught on camera).

She is doing better about sleeping and last night I even got 5 hours of sleep IN.A.ROW! I miss sleep...

Anna got a hair cut!!! It was so long and she HATED me combing it so we finally did it and it's

SO cute!

Here it is long (sorry for the crappy quality- it was on my phone)

And here it is after!

It has snowed a ton here in the past few days and I took Justin outside with me for a minute while I let the dog out and took some pictures of him.

Here he is with a giant ice sickle

And a tiny one he thought licking would be a wonderful idea

And throwing snow in the air was fun too

Tomorrow I am going to take Anna and Justin sledding- so I will post more pictures then. (I promise. I'm going to try and not neglect the blog anymore).

Merry Christmas!

2010-12-23T19:38:00.003-06:00

I've been so busy w/ baby Camryn and the kids going to school, I've been neglecting my blog. Shame on me.

Anyways I just thought since I have a quick moment that I would post some more pics of the kiddos.

Some Christmas pics:

Some of Camryn:

Welcome Baby Camryn!!

2010-11-26T18:59:00.001-06:00

On Monday I was SO sick... I had some 24 hour stomach bug. Tuesday I woke up and felt SO much better in the puking/pooping department and I had what was to be my last OB appointment, u/s, and NST. I started to have pains in my lower abdomen but just thought it was nothing or a UTI (I never felt contractions before). So I make it to my appointment, made it through the NST and I thought there weren't any contractions (come to find out later in the appt that they were contractions). Next I had a BPP to see how big she was and that was HORRIBLE! She wasn't moving very much on the NST, so I had to lay an extra long time to make sure she was ok. The u/s tech was pushing on my belly and it hurt so effin bad. After like 30 minutes of that she moved enough and then I had my appt in the room with the OB. I waited for like 20 minutes and she finally walks in (I was dying at this point). She checks me and says "OH my...you're dilated to 4 and are 90% effaced!". I was like WHA????? Wow. She asked me if today would be a bad day to have a baby and I was like NOPE! Since I was so sick the day before I hadn't eaten since Sunday so I ran home, met DH there (my mom was already watching the kids) and we went to the hospital where they checked me again at 12:30 pm and I was dilated to a 5 and was 100% effaced!

Waiting for all the prep work for the c/s was miserable! I was so dehydrated from the 24 stomach bug, they had to call in anesthesia to do my IV and couldn't give me any pain meds until I had at least THREE bags of fluid! It was so painful!!

At 1:30 I finally had 3 bags of fluid rushed in and was ready to go to the OR. They took me back, did my spinal (which I didn't have last time b/c it was an emergency). The spinal was a piece of cake compared to the contractions! I laid down and they started the c/s. DH came in shortly after and he sat my my head. I was freezing so they brought me a warm blanket and wrapped it around my head.

At 2:16 pm Camryn Paige was born! She weighed 7 lbs 7 oz and was 19 in. long! She came out crying and it was the best noise I have ever heard in my life. I didn't get to see/hear any of the triplets being born, so this was wonderful. She did great and got all 9's on her Apgars and then they tested her sugar and it was low so she had to go to the nursery after a while (my surgery took about 2 hours). I started to feel pain after a while b/c I had my tubes tied and the OB was fixing an adhesion that formed after my last c/s. She said she was glad that I didn't try for a VBAC b/c my ute was so thin where the last incision was it would have burst open for sure They gave me 2 rounds of demerol and I started to feel a little better, but very dizzy. Finally around 4 something they were done and I got stiched up.

I was wheeled back to my room w/o Camryn and after a little while they brought her in. DH fed her a bottle to get her sugar up and my family and the kids came in. Justin fell in love with her instantly. He wanted to hold her and feed her and kept calling her "My baby Camryn". It was SO cute. The girls are a little indifferent to her but that's ok. She ate just enough to where her sugars went up and she didn't have to go the NICU. They have been fine ever since.

My sugars are still high, so I am still on the blood sugar pill--not the insulin. Recovery was pretty good. They let me go home yesterday I've been doing ok...

I came home to both of the big girls being sick (probably my 24 hour stomach bug ) and my mom stayed around to help which was SO nice since I couldn't lift anyone. Justin is still not sick (knock on wood).

Here are a few pics!!

We will miss you Ashley!

2010-11-09T21:19:00.002-06:00

Since the triplets were 3 months old they have had the most wonderful physical therapist. Her name is Ashley and she has been the greatest thing that ever happened for my kiddos. Today was her last day for therapy through First Steps since the kids will be turning 3 next week and transitioning to the school district.

Words cannot express how grateful I am to have had a nice, caring, gentle, loving and knowledgeable therapist for my babies.

Thank you so much Ashley. We will always be thankful for you.

Halloween 2010

2010-11-01T19:38:00.002-05:00

Here are a few pics of the kids at their Halloween Parade at school.

Ayva

Anna

Justin

All three pirates....Arg!

Justin and his BFF from school

They had a great time. On Halloween we went to the mall to trick or treat instead of going door to door. That was MUCH easier for mommy and the kids...they got a TON of candy (which I will be saving some to eat myself ;)). Both the grandma's went and lots of fun was had! :)

Small update!

2010-10-04T09:40:00.002-05:00

Baby Camryn is doing well so far. Back in September I failed my 1 and 3 hour glucose tolerance test and they diagnosed me with Gestational Diabetes. It's been ok...just rough for me b/c I LOVE me some chocolate! :) Anyways, a week after I got diagnosed they started me on Glyburide, a pill for diabetes, and it's worked ok.... I was having some lows the first few days after they increased my dosage from one pill at night to 2 in the morning and 2 at night and just yesterday I started to get back up to the higher numbers...maybe it's wearing off...? I have another appointment tomorrow for a Non-Stress Test and to go over my numbers. Then I have another appointment on Friday (they are making me come twice a week now) for another Non-Stress Test and a Growth Scan. Babies can tend to be bigger when the mom has GD, so they will measure her and I will just get to see her again :).

The trips are all doing fine! We are going through testing for the school district transition right now, and it's keeping me BUSY! I REALLY love the school that they are at right now, the Children's Center for the Visually Impaired, but I don't think our school district will want to pay to send them there :( I think it would be best for them to be at a school addressing their visual needs first and foremost in the learning process and CCVI knows how to do that better than the school district w/ one vision teacher. I've already decided that I will see how it goes and if I don't like the end result, I don't have to send them anywhere....I mean, they are only just about to turn 3 for heaven's sake!

Also Ayva got a new chair and I will post a video of her in it when I get a chance! It's awesome!

Chiefs Charity Game for CCVI

2010-08-27T09:40:00.002-05:00

Tonight is the Chiefs pre-season game for the kids' school, the Children's Center for the Visually Impaired!

Here are some pics I took of the kiddos in their shirts- We are supporting even though we can't go to the game!

Anna

Ayva

Justin

All three

Ayva's EEG results!

2010-08-14T02:05:00.003-05:00

Dr. A finally called me today to tell me how Ayva's EEG looked (She had it on Tuesday). He said.... drum roll please........

SHE ISN'T HAVING HYPPSARRYTHMIA!!

She hasn't had it (knock on wood) for 5 months now!!! Since the seizures started, she has never been with out seizures for this long. I know I remember another time, not too long ago, where she almost died in the pursuit of seizure freedom.... you can start reading here if you're a new reader or forgot...(I know I tend to block out bad things).

She is still having another small type of seizure--so she's not entirely SF, but we will take no Infantile Spasms for now ;) He did say that it looked better than the last time so she will stay on her current regime of meds/Keto diet.

Yay! :)

Blogger Award!!

2010-08-08T13:51:00.002-05:00

Isaac's Mom at Issac's Big Adventure gave me a blog award!!!! And I almost didn't see it in my comments because of a whole bunch of Chinese Spam comments!!

Thank you so much!

I guess I have to share 7 things about myself as the rules say....

1) I am more exhausted during this pregnancy than with triplets and going to work combined!

2) Ice cream is my most fav thing in the world!!

3) I could eat Mexican food every day for the rest of my life! (and yes, Taco Bell counts!)

4) I am deathly afraid of flying :(

5) I am so proud of my kiddos for being such brave little fighters! They are my inspiration everyday!

6) My fav music group is The Fray. I love me some Fray!!

7) I actually enjoy cooking for everyone but would enjoy it more if I had more TIME!

So now I am going to pass the award on to 2 great blogs. The first is one I read often- another Infantile Spasms buddy at Happy Being Trevy . Danielle is a great writer and she is much better explaining how things really are in this crazy world we live in (much better than me!).

The second person I pass this award to is to Megan at Multiple Baby Pileup . She is an awesome MoM and I am a better person for having read her blog and being able to know her on my MoM chat board. She is an amazing person--so everyone should go check out her blog!

Baby Camryn

2010-08-06T13:27:00.002-05:00

Today I got another ultrasound and here are a few pics of our newest addition, Camryn Paige! I am 23 weeks and 2 days!

She is growing great and we cant' wait to meet her!

Please Vote for Us!

2010-08-04T08:42:00.002-05:00

Please take a minute to vote for us to win the a gift basket for a special needs momma. This is especially awesome timing since having 2 special needs kiddos is stressful and that's not talking about Justin OR me being pregnant.

So, if you have a minute, please oh please vote for us! All you have to do is go to this link: http://www.facebook.com/pages/Mindful-Mama/109104709107402?ref=ts&v=wall

Once you're there, just like the page so that it will allow you to comment, click on the Just Others tab, and scroll down until you find the nomination for Sarah, posted by Jody or Michele. All you have to do is either comment on it or like it and you will have voted for us! I know that it takes a minute or two, but I'd really, really appreciate it if anyone out there would add their votes. I never EVER win anything, but if I could start now, boy could we use this stuff!

Update...

2010-08-03T13:04:00.002-05:00

So, not much going on around here.

Ayva is doing very well. She is gaining strength back in her head/neck and is beginning to lift it off the ground now :) :) Here is a quick video of her showing her stuff:

Photo and video editing at www.OneTrueMedia.com

She is happier since being off the Depakote but also a little more needy of me :/ Which is ok for now since the girls are on summer break from school--I'm hoping that we can kind of get that resolved before August 23rd-the first day of school.

She has yet another EEG next week on the 10th to see if the little startles she has when a loud noise scares her is anything or not. Then on the 11th both Anna and Ayva have eye Dr. appointments.

Anna is doing VERY well being off the one medicine she was on--Topamax. She is talking better, comprehending better and moving/balancing a little better!!! I am SUPER proud of her!! You can now ask her a yes or no question and she will either say "yeah" or shake her head "no". I will definitely have to try and get that on video :)

Also she is eating A TON!! The Topamax was a appetite suppressant and she was just maintaining a steady weight of 19 lbs for a long time. Now that she's been off for about a month and a half- SHE IS UP TO 21 LBS!!!!!!! She is eating a ton during each meal and is even requesting snacks (by whining until I feed her). She is walking great (with help still) and wants to follow Justin everywhere. She is very motivated so I think with time she will get it on her own!

Justin is doing great also! Potty training is excellent! He is in big boy underwear all day and only wears a diaper at night--he's a very heavy sleeper! :) He has definitely gotten to the stage of "mine" and doesn't want to share anything-with anyone. Everything is his, "My sit there" "My phone" "My drive the car". I am hoping this phase is short lived though :/

Baby Camryn is doing great also. I will be 23 weeks tomorrow and on Friday I have another ultrasound and hopefully I will have some pictures to show! :) I'm feeling ok, tired and hungry, but otherwise really good :) I can't wait until she is here-and am super excited to see how one baby is different than three at a time!!

Ok and now I will share a few pictures because I can't resist...

Anna

Justin

And I only have one that isn't so good of Ayva recently-

Why, hello!

2010-07-03T20:49:00.003-05:00

I've been trying to keep up with the blog (really, I have) but there just isn't much to say these days. The kids are going to school, the girls are getting therapy and things are just the same week after week.

Ayva is doing well. She is off the Depakote now and seems to be doing great off of it (knock on wood). She has another follow up EEG in August- just to see if things are staying the same. She's being so good and sweet (when she's not fussy ;)) and she seems to be happier every day.

Anna is weaning off the Topamax. So far it's going well. She is working SO hard on walking! She is really trying and I'm so proud of her! Her pool PT gave us some bands for her legs to try and help w/ her knees hyper-extending so much.

Justin is.........Justin. His potty training is going GREAT!! He very rarely has accidents. He is talking so much and in big boy sentences! He's learning about EVERYTHING! Like tonight, I told him he either had to pick up his toys or he was going to bed, and he said to me "Go to the corner?" He would have rather sat in the corner than picked up his toys....naughty.

Here are some pics of the kids in their USA parade at school and a few videos of them also!

Make an on-line slideshow at www.OneTrueMedia.com

I do just want to say she is doing REALLY well in her walker, but by the time I got this video they had already gone around the halls once and this was her second time around and got tired. (and yes, that is Ayva asleep)

And here are just a few pics off my phone :)

HAPPY 4TH OF JULY EVERYONE! :)

Some stuff...

2010-06-01T11:47:00.003-05:00

Here are a few pictures of the kiddos blowing bubbles to sweet JW...

And overall our Memorial weekend was good. We didn't do much, which suited me just fine. We took the kids to Justin's parents to swim in their pool. Anna and Justin warmed up to the pool after a while and ended up really liking it, but Ayva could not be persuaded. I just think the water was too cold for her and she wasn't up for that kind of temperature difference. Hopefully she will like it soon. Yesterday, we just hung out at home and grilled hot dogs and played outside. It was a little hot, but the kiddos really liked being outdoors.

Anna is doing well from the Botox. Days 3-6 are pretty much all the same. SHE CAN STAND WITH HER FEET FLAT ON THE GROUND NOW! You have to help get her feet in that position, but she can actually keep them there now! Her toes still are wanting to curl in still, but hopefully they will relax aslo. Here are some pics (sorry for the quality, they are from my phone)

AND FINALLY I WILL FINISH THIS POST.... I started writing this like 2 weeks ago, but am going to finish it- sorry.

Anyways, Anna is still doing well post botox. She saw the Neurologist last Thursday and since she will be SEIZURE FREE FOR 2 YEARS in August, we are taking her off the only seizure medicine she was ever on, Topamax. It has side effects like loss of coordination, trouble thinking, trouble w/ speaking and loss of appetite. We are all very hopeful that she will be able to do even better off this med and gain some weight!!

Here is a video of Anna walking!

Make an on-line slide show at www.OneTrueMedia.com

Ayva also saw the Neuro last Thursday and said she is doing great. The Keto Diet is working well for her and we are weaning her off her Depakote!! :) If she continues to do well off the Depakote, we will move on to weaning the Tranxene. And if that goes well we will either take her off the Keto Diet or her Topamax and leave one or the other for a while. We are all super excited that she is doing well in the seizure department!! We also talked about Ayva's development....I just wanted to know, that since she was once able to roll over and hold her head up, if she would ever regain skills like that. He was VERY optimistic that Anna AND Ayva would both one day be able to walk and communicate! That was the most wonderful news. Even though both of the girls have CP, doesn't mean they aren't smart and cannot learn to walk and talk. I'm so glad that there is at least that little shred of hope for my sweet girls. They are fighters.

Post Botox days 0-2

2010-05-28T20:31:00.002-05:00

Day of Botox:

This is her with her numbing creme on her legs before the shots. She got three in each leg, and hopefully we will see some MAGIC soon!!!

Day 1 post Botox: Everything is pretty much the same. They said it can take up to a week and a half to see results. I will keep posting though :)

Day 2 post Botox: Same as day 1. Although I will say that it seems easier to get her to bend her foot.

Botox it is.

2010-05-21T08:37:00.000-05:00

Well, after seeing the Rehab Clinic Dr., Dr. R suggested Anna get Botox shots on her legs. You didn't know there were more uses for Botox other than wrinkles?? Well there is! Some get it for migraines, some for wrinkles and some get it, to put it simply, to put the overactive muscles in her legs (or any muscles but legs in Anna's case) "to sleep" for a while so the muscles that are being overpowered have a chance to get stronger and try to compensate. It works wonderfully...for a while and then the Botox effects slowly goes away. But the hope is that some of the muscles can learn in that time to help counteract the high tone ones. We shall see. Her appointment got moved up to Wednesday from AUGUST!! So I have less time to prepare. I hope it doesn't hurt her too much, I have a feeling she and I will both be crying.

Ayva is doing really well. She is continuing on the Ketogenic Diet nicely and is starting to move her head by herself again!! She can move it forward but isn't strong enough yet to move it back. She is moving her arms with more purpose and now presses buttons and moves a wheel toy! You can tell now that when she looks at you she really SEES you. She smiles more and laughs more! And overall, she is slowly making some good progress!!

Justin is dong well at school (well they all are). He no longer cries when I leave him. He just kisses me and says bye. His teacher says he has a hard time lstening, but I always stay and watch from the secret observation room and I think the teacher just has NO patience!! Which is a terrible attribute to have when working in a special needs school!! She just gets so frustrated so easily. Justin is doing ok with potty training. School kind of messed us up since everyone else there is in diapers. He asks to go to the potty sometimes, so that's a good sign. Otherwise he is doing great and is being a pretty good boy.

Little baby Fields is doing well. Today he or she is 12 weeks 2 days. I've had no real problems, just nausea. Having one baby is kink of boring compared to having three!! Don't get me wrong, I am SO happy to be having one baby. It's just I was spoiled with all the ultrasounds last time and this time I only get two?? And one was just a little dot?? I would like to see what's going on in there! Oh well. My next appointment is June 6th. We are thinking/ hoping it's a boy so Justin has a brother, but either will be fine and we've already came up with a few names we like for each. We will definitly find out if it's a boy or a girl, because I hate surprises!! I can't wait to find out so I can start picking out stuff!! We are so excited!!

Results from Ayva's first EEG since starting the Keto Diet!!!!

2010-04-20T19:32:00.002-05:00

NO MORE HYPPSARRYTHMIA!!!!!!!!!!!! WE ARE SOOOOO EXCITED!!!

Dr. A FINALLY called today after some not-so-nice messages left by me. A quick 30 second phone call was all it took to tell me she isn't having hypps. anymore! BUT, she is having another type of little seizure (he didn't say what kind in our nanosecond conversation). He thinks that continuation on the diet will make those seizures go away also! :) We will stay on all the meds for now (Topamax, Depakote, and Tranxene) since she is having these new "little seizures". I call them "little seizures" because that is what Dr. A called them.

So, we are extremely grateful to everyone who kept her in your thoughts, and prayed for her miracle. We hope this is it.

I leave you with a pic of our little fighter!!!

BIG NEWS!!

2010-04-19T09:21:00.003-05:00

Justin and I are expecting our FOURTH baby!!!

I am 7 weeks 5 days along and Due December 1st. We are both really excited it's just one baby this time :)

I'm feeling a little sick, but all is well and we're just SO happy!!

Picture Post

2010-04-12T18:28:00.002-05:00

This weekend was GREAT! The weather was nice, we got to hang outside almost ALL weekend. Justin made a super nice play area for the kids. It has a sandbox, a water table and a picnic table! They really like it! Little Justin asks me to take him out to play all the time now :)

So here are a few pics from Easter

And a few from our weekend outside :)

It's been a while!

2010-04-09T10:36:00.002-05:00

I've been a little MIA lately, but hopefully will be blogging on a regular basis soon ;)

Ayva is doing well on the Ketogenic Diet. She is more alert and happy. You can just see in her eyes she is more "in there", you know? Like the light is on and someone is home. At least sometimes. She has a follow up EEG on April 16th. It will be the first one since she started the diet in February. We're keeping our fingers crossed.

We did have an appointment w/ Dr. A a couple of weeks ago and he asked how she was doing. I told him more alert but also her reflux is better. He said, "Hmmmm." and I said "What?". Dr. A said that usually the diet makes reflux WORSE because of the high fat/ low carb and sugar ratio. BUT when children's seizures either get better or go away, their reflux tends to go away from no seizures.... we are hoping that's the case!

He said that if she isn't having hypsarrythmia on the 16th, then we can start weaning her off the Depakote.

I spoke to him about Anna as well. He said that Topamax (which is what she's on) can have some side effects like poor balance, trouble w/ memory and speech. So on the 16th, he will give Anna a new prescription for another medicine that has no side effects! He doesn't want to take her off meds completely just yet because of Ayva's problems, but a change could be really good for her! I can't wait to see if it helps in any way!

All the kids like school. Justin only cries for a few minutes when I leave now, so that's a plus! We are getting a little antsy about the weather starting to be nice!

OH YEAH! We will be walking in the Trolley Run on April 25th, 2010. It is to support the kiddos school CCVI (or Children's Center for the Visually Impaired). If you'd like to join our team and walk with us, just email me! OR if you'd just like to donate you can click here.

I will leave you all with some new pics of the kiddos!

Purple Day is coming...

2010-03-23T09:38:00.001-05:00

This Friday...

March 26th...

Is Purple Day!

Will you join us by wearing purple...

In honor of Anna and Ayva...and all of their seizure friends?!

Click here to learn more about Purple Day
and the extraordinary little girl who launched the event.

Ridin' the Carousel

2010-03-23T09:26:00.002-05:00

On Saturday we went to the mall and they have a really neat children's play center there. Justin and I took Anna and Justin on the carousel that they have there!

The song of our lives...

2010-03-05T20:28:00.002-06:00

This song by Rob Thomas pretty much sums up how I feel about the situation with our girls...

Someday

You can go
You can start all over again
You can try to find a way to make another day go by
You can hide
Hold all your feelings inside
You can try to carry on when all you want to do is cry

[Chorus]
And maybe Someday
We'll figure all this out
Try to put an end to all our doubt
Try to find a way to make things better now and
Maybe someday we'll live our lives out loud
We'll be better off somehow
Someday

Now wait
And try to find another mistake
If you throw it all away then maybe you can change your mind
You can run, oh
And when everything is over and done
You can shine a little light on everything around you
Man it's good to be so warm

[Chorus]

And I don't want to wait
I just want to know
I just want to hear you tell me so
Give it to me straight
Tell it to me slow

Cause maybe someday
We'll figure all this out
We'll put an end to all our doubt
Try to find a way to just feel better now and
Maybe someday we'll live our lives out loud
We'll be better off somehow
Someday
Cause sometimes we don't really notice
Just how good it can get
So maybe we should start all over
Start all over again

Really cute videos of Anna!

2010-03-05T14:56:00.002-06:00

Make an on-line slide show at www.OneTrueMedia.com

Anna and her new walker!

2010-03-03T08:07:00.002-06:00

Anna received her KidWalk Gait Trainer yesterday and we already LOVE it! Anna does SO well in it and has already begun to take steps on her own!!! Here is a video I took of her this morning! Before I got the video camera out, she took 10 STEPS ON HER OWN!!

(please pardon the bed head, pajamas, and strange background noises)

Photo and video editing at www.OneTrueMedia.com

And here are some pictures I took of her in it yesterday!

Thoughts

2010-02-19T19:10:00.002-06:00

I've come to realize that if I look at what "could have been" it just makes my life a million times harder. It's pretty tough not to see things that make me wish we could have just been as normal as a family with triplets can be. It's really hard for me to see other healthy, thriving, HAPPY multiples. Not that I hate this life we have now. I love my family and my life with them in it. I would never trade my family for anything. It makes me sort of think, at times, of a parallel universe, where that could of been us...happpy, healthy, and just living life!

I just wish for...for a boring life. Does that make sense? I wish for that...a "normal" life for all of us. Why should my girls have to suffer? Why is it that out of every set of multiples that were born as early as ours were, OUR girls drew the short straw(s)? I just can't understand that. I may never understand that. I'm not sure that I will ever be ok with not knowing why, but I don't have any other choice, do I? And I know some people say "Well God chose you because you are strong" or "He chose your girls because they are fighters". Well, I say to that- That's total bull shit (pardon my french). What if we were weak, would that mean my girls wouldn't be suffering now? Would that mean that if we couldn't deal or handle the life we've been given, we would have been dealt an easier life? I bet there isn't a person in this world who is strong enough to be happy with watching their child(ren) suffer and say "Well God chose us to suffer because we are strong and can handle it". And like I said before, I love my children, love my husband, my family, but not one day goes by that I don't wish things were different for them. I would sell my soul to the devil to keep my children from suffering. Even if that meant I could never enjoy them being happy and healthy. I would be ok with that. As long as THEY WEREN'T SUFFERING! I would sacrifice anything for them to be healthy and happy.

I look at my children everyday and feel whole-hearted love and pain at the same time. Pain for Justin who isn't getting to grow up with his sisters. Pain for Anna when all she wants is to follow her brother around and play with him, and be close to her sister. And pain for Ayva. I have to look in her eyes everyday and see that she is in there somewhere, just trapped. Trapped in her body. Trapped with a brain that can't stop having seizures.

How do you look in their faces everyday and not cry? Cry for them. Cry with them.

The world is a very unfair place. A place that I cannot understand. And these days it gets harder to try to understand.

It's like a nightmare. A horrible nightmare that won't end. Only I don't think we will wake up anytime soon...I don't see an end...when will we wake up?

Started the Ketogenic Diet- our hospital recap

2010-02-11T16:11:00.004-06:00

We called Monday morning and the hospital said her room was ready. So we leave and head straight to the lab, which they told me to do before we checked in. There were no orders for her labs, so that took an hour. THEN, we walk over to admissions where they tell me to have a seat while she calls upstairs to see if her room is ready. Two hours later I'm gold that there was a mistake and we have to share a room with another family. We get up to her room and the other family is already there and has already taken the side of the room with the bed, the bathroom, the tv and the window. O-K...all I had was her crib a chair (which was also my "bed") and a TINY space for my feet! The other baby cried ALL.NIGHT.LONG. And since I was "sleeping" in a chair that had no room to recline, I got no sleep. I complained to the hospitals patient advocate and she tells me she's sorry, gives me a gift bag (which consists of a St.Patricks Day face stamp, some Christmas tissues and a few snacks) and says nothing can be done. Great. Later that day, the other family starts yelling at the nurses and they tell me I can move into a room with another kid and get a bed. So I moved. This new kid cries all night, his mom isn't there because she has other kids and they aren't allowed in the room, and has six monitors going off all night. The next day they say I can move again into a room that as of now had no room mate, but they couldn't guarentee that someone wouldn't be put in with us later. So we move again! And here we are, waiting to be discharged, in a room by ourselves. Ayva has done really well with the transition onto the diet. She didn't get sick and we have high hopes that this is the answer for our brave princess. Thanks to everyone who kept her in your thoughts this week! I will post some pics when we get home!

PICTURES!!!

2010-02-05T19:39:00.002-06:00

I'm going to show everyone some pictures I took today! We had an impromptu photo shoot in our living room window today and I think they turned out GREAT!

Just a short post to catch up

2010-01-28T10:43:00.003-06:00

Ayva had another EEG yesterday which still showed her having hypssarythmia (which is the abnormal brain wave pattern associated with Infantile Spasms). And even though we aren't noticing really any "seizures" , her neuro wants to change things up. On Monday February 8th she will be admitted into Children's Mercy Hospital and begin the Ketogenic Diet. It's basically a stricter form of the Atkins Diet and hopefully this change will help my sweet princess become seizure free!!! We really need a break, so we are all hoping that this is our miracle ticket. I will update again when I know some more about it/ or when we get there.

In Anna news, we are still waiting for the arrival of her KidWalk gait trainer (aka a walker). I am super excited about it and cannot wait to see her walk in it!

In Justin news, we have started POTTY TRAINING!!!! We are on day 4 now and I think he is getting the hang of it. I had quite a few appointments this week, so it probably wasn't the best week to start, but he's still doing pretty good- considering he's a boy and is very easily distracted.

IN EVERYONE NEWS, the kiddos are going to start SCHOOL next week! They will all be attending the Children's Center for the Visually Impaired. The girls will get most of their therapies there and Justin will get to go as a peer!

Winter 2009

2010-01-10T20:21:00.002-06:00

Today, Ashtin and I took Justin and Anna out to play in the snow (it was pretty cold and windy, so we thought it best not to take Ayva out today).

Here are some videos of them sledding for the first time. Really, they are experiencing the snow all together for the first time!

Make photo slide shows at www.OneTrueMedia.com

2009- A look back in pictures

2010-01-01T11:42:00.002-06:00

Here is a recap of our 2009. And Here's to 2010 being a better one than the last.

January

February

March

April

May

June

July

August

September

October

November

December

A Picture update :)

2009-12-17T19:04:00.002-06:00

Not much really going on around here....I've been busy taking care of the kiddos and with the holiday coming up. But thought it would be nice to share some pictures that I took of Anna and Justin today while I was waiting for the therapist to come (Ayva was taking a nap)

Anna working on her sitting

Justin

Justin blowing Mommy kisses

Anna showing off her big toothy grin!

It seems like it's been forever

2009-12-02T18:25:00.002-06:00

since I blogged about our lives. We're pretty much just truckin' along...nothing much has changed. Ayva doesn't see the Neuro until January. It seems EVERYTHING is happening in January. Ayva's neuro appt., the kids *late* 2 year check up, a follow up cardio appt. .....and the list goes on and on... Seizure wise....Oh I don't know...it's SO hard to tell if she is having any or not. She is VERY easily startled, and that is exactly what her seizures look like. I'm HOPING that they are just startles and not seizures, but who knows! Ayva is getting to start Aqua-Therapy soon and will be joining Anna- who LOVES it! I think it's done her a lot of good! They have a developmental Pediatrician appointment on Monday and next week is Ayva's follow up for her G-tube.

Speaking of G-tube..Ayva has gained almost 2 WHOLE POUNDS! Which is fabulous! Everyone is doing good and just thought you all would like an update! I will leave you with some recent pics!

Justin checking out the train at Crown Center

Anna watching the train from her stroller

Granny with Justin

Granny with Anna

My sweet girlies

Tomorrow I will try and post some pictures from their birthday and such...hopefully.

Win $100 and a Gift Basket from Aquaphor!

2009-11-21T19:14:00.002-06:00

Go check out Little Bites of Heaven's Giveaway!

http://http://morelittlebites.blogspot.com/2009/11/aquaphor-gift-basket-100.html

You could win $100 Visa Gift Card and a VERY nice Gift Basket from Aquaphor!!

Prematurity Awareness Day

2009-11-17T09:56:00.002-06:00

Just 2 years and 2 days ago, my trio were born 11 weeks early.
Anna weighed just 3 lbs 1 oz.

Ayva also weighed 3 lbs 1 oz.

And Little Justin weighed 2 lbs 15 oz.

They spent a horrific 55 (for Anna) and 57 (for Ayva and Justin) days in the NICU battling infections and trying to learn how to eat, and keep their temperature up and everything a full term baby will automatically know.

Visit March of Dimes Prematurity Awareness Month to learn how you can help.

Happy Birthday My Sweet Babies!!

2009-11-15T20:40:00.004-06:00

Anna, Ayva and Justin are 2 today!! I can't believe these past 2 years have gone so fast...it seems like yesterday my sweet angels looked like this...

And today they look like this...
(Justin and Anna)

Ayva

It's been a really rough road to get here, but I think that just to have these three miracles in my life, it's all been worth it. We've struggled through being born early, getting life threatening NEC infections, Group B Strep infections, the girls being diagnosed with Infantile Spasms, the girls being diagnosed with Cortical Visual Impairment, Ayva almost dieing from infections from taking ACTH, and still trying to become seizure free... I can only hope that by their 3rd birthday, they will have had it a little easier, because they have already fought through more than any adult I know...

I love you my precious, sweet babies....Happy Birthday!
Love, Mommy

Something to read!

2009-11-10T07:36:00.000-06:00

Hey go check out my post about "Thankfulness" on my Photography Blog!!

www.sarahfieldsphotography.blogspot.com

Sleepy Head at OneTrueMedia.com

2009-11-06T19:00:00.001-06:00

Make an on-line slideshow at www.OneTrueMedia.com

Anna Drinking out of a Straw at OneTrueMedia.com

2009-11-06T18:59:00.001-06:00

Make video montages at www.OneTrueMedia.com

Some Videos

2009-10-29T10:56:00.003-05:00

The first video is of Anna DRINKING OUT OF A STRAW!! That is BIG news for Annie!

Make an on-line slide show at www.OneTrueMedia.com

And this second video is of Justin. He is so funny. He didn't want to take any sort of a nap that day, and this was the end result.

Make an on-line slideshow at www.OneTrueMedia.com

Holland

2009-10-24T19:29:00.004-05:00

I've came across this before, and now I think it's a good time to share it with all of you.

Welcome to Holland
By Emily Perl Kingsley

I am often asked to describe the experience of raising a child
with a disability to try to help people who have not shared
that unique experience to understand it, to imagine how it
would feel. It's like this:
When you're going to have a baby, it's like planning a fabulous
vacation trip to Italy. You buy a bunch of guidebooks and make
your wonderful plans: the Coliseum, Michelangelo's David, the
gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your
bags and off you go. Several hours later, the plane lands. The stewardess
comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland? I signed up for Italy!
I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland
and there you must stay.
The important thing is that they haven't taken you to a horrible,
disgusting, filthy place, full of pestilence, famine and disease. It's just
a different place.
So you must go out and buy new guidebooks. And you must
learn a whole new language. And you will meet a whole new group
of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy
than Italy. But after you've been there for a while and you catch your
breath, you look around and you begin to notice that Holland has
windmills – and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy ... and they're
all bragging about what a wonderful time they had there.
And for the rest of your life, you will say, "Yes, that's where
I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away, because
the loss of that dream is a very, very significant loss.
But if you spend your life mourning the fact that you didn't get to
Italy, you many never be free to enjoy the very special, the
very lovely things about Holland.

::sigh::

23 months old!

2009-10-15T10:49:00.004-05:00

W.O.W. 23 months old today. I really cannot believe that in one short month my babies will be TWO!!!!! It seems
like these past 2 years have flown by. It will be a happy moment when
they turn 2, but also a sad one. Last year, I was hoping that by this
year Ayva would be seizure free. It's not looking like that is going to happen,
but I try to stay a little hopeful. Anyways, here are some new pics of the trio
in their halloween costumes!

Anna the Kangaroo

"Mom! I don't want to be a kangaroo!"

Justin the Monkey

Ayva the Lion

How it went

2009-10-11T08:21:00.002-05:00

Her surgery went well. She had to stay overnight b/c the hospital has a policy that if you are under 2 you have to stay overnight. She will be 2 next month. Anyways I can already tell that this was a good decision we made for her. More food in her belly means more energy! And she is awake more and happy! She's probably also happy b/c she hasn't had to take any of her medicines by mouth since Thursday morning! She HATED her medicine and now she is just overall a happier kiddo! :)

Thanks to everyone who kept her in your thoughts! We really appreciate it!

Tomorrow...

2009-10-07T10:26:00.002-05:00

Tomorrow is Ayva's G-tube surgery. Although they haven't called to tell me what time to bring her, it will be tomorrow sometime. Wish us luck.

I heard a song on the radio yesterday and I instantly thought of my girls (well Ayva especially). It's Rob Thomas- Someday. If you have a chance you should listen to it.

I will try to update tomorrow if I can. I will almost definatly post something on Facebook. Thanks for everyone's prayers and good thoughts for tomorrow.

Prayers for Trevor!!

2009-10-06T10:15:00.003-05:00

Please say a little prayer for Trevor today. He is having brain surgery for the demon in his brain (aka Infantile Spasms). He is such a sweet, adorable little boy.

www.trevorshope.blogspot.com

Must Read!!

2009-10-01T12:49:00.001-05:00

I MADE A WEBSITE ABOUT SPREADING AWARENESS FOR INFANTILE SPASMS! PLEASE GO CHECK IT OUT AND TELL OTHERS ABOUT IT!!!

WWW.WIX.COM/SAUCYSARIE/INFANTILE-SPASMS-AWARENESS

60th Birthday Party Pics!

2009-09-27T13:05:00.005-05:00

Yesterday my Grandma Gwen had a 60th birthday party at her house! Everyone had lots of fun- which included a hay ride, a bouncy house, fishing, s'more roasting and family pictures.The birthday girl!

My brother Jason, my Dad and my Mom holding Ayva.

Ayva

Justin and his beloved hush puppy!

Justin and Elijah

The birthday girl with her 60 glasses on!

Her birthday cake.

My Grandma Gwen and Grandpa Arlin

All of her grandkids leaning in for a birthday kiss!

All of the grandkids.

One, big, happy family!

The daughters

Everyone had fun, and some even stayed overnight and woke up to a wonderful breakfast!

HAPPY BIRTHDAY GRANDMA!

Infantile Spasms Awareness Week

2009-09-25T20:31:00.002-05:00

I share with you a letter from a fellow IS family, who says it better than I could.

From: Marissa's Bunny
Sent: Wednesday, September 23, 2009 3:26 PM
To: Ken Lilly
Subject: The Child Neurological Society, Questcor, and Infantile Spasms Awareness

Week Greetings, fellow infantile spasms parents! You may or may not have heard of me or Marissa, but we're in the same boat as all of you. Questcor and the Child Neurological Society are teaming up for an Infantile Spasms awareness week, but it seems to be a very focused event, and is only taking place at the annual CNS convention. This doesn't seem quite right to me. Following is the text that's being posted on Marissa's Bunny today discussing this, and I'd very much like it if you could either link to my blog with the post, or enter the text on your site as well with attribution to Marissa's Bunny.If you'd rather do neither, that's fine too- but please address your blog reading public about this. Questcor has taken enough of our money and uses our children as shining examples of how their business process helps us, and disregards the fact that our insurance companies have paid them hundreds of thousands of dollars collectively. They speak a good game of promoting awareness, but I still have yet to see anything tangible, and buying a buffet table at a neurology convention and calling it "awareness" seems hollow to me.It's hard to get a group of anybody to do anything in conjunction. Maybe this time, if we all speak out at once, we can get something tangible to happen. Please send this email to any other IS bloggers you may know. If awareness is what they want, then awareness is what they will get.-

Mike Marissa's Dad

Help us be GAP kids!!

2009-09-25T20:24:00.000-05:00

Please vote for us!!!!

http://family.go.com/gapcastingcall/entries/saucysarie/

22 months

2009-09-16T13:30:00.006-05:00

The trio turned 22 months yesterday. Two more months and they are 2. I can't believe how big they are now. Although, it doesn't seem like this year has been moving at all. It seems like we are at a stand still. Tomorrow we will know what Ayva's EEG said, and also we will be talking about weaning Anna off of her Topamax dose. She has been seizure free for 13 months now. I'm sure there will also be talk of putting Ayva on the Ketogenic diet. Which will require at least a 48 hour hospital stay. And also I'm sure there will be talk of the Surgery Clinic appointment she has on the 22nd about a feeding tube. Life stinks. Anyways, we are just taking it one day at a time....so I will leave this depressing post off w/ some pictures.

Also I have a website for my photography. You can go check it out! www.wix.com/saucysarie/sarah

What Infantile Spasms looks like

2009-09-15T10:40:00.003-05:00

As I sat and watched Ayva have her EEG yesterday I thought about her poor little brain. It's probably hard to understand unless you know what brain waves look like when constantly having seizures versus not having any. So the first picture is of a child with Infantile Spasms.

Crazy. The lines are jumping all over and what most people call "chaotic". This is what Ayva's brain waves look like. I secretly watched the screen yesterday (usually they turn it to where I can't see it). I just sat there and stared... I knew what it was saying. Ayva is still having seizures even though I can't tell by just watching her. At some times Ayva's brain waves calmed down, and other times it was even more chaotic. I'm sure the Neurologist will tell me on Thursday what that means exactly. If it's better than before she went on the Depakote, we may try to increase her dosage and see if that helps. If not, then we will be moving on to the Ketogenic Diet. I think this is pretty much our last chance to stop these horrible things. Anways, here is a normal EEG so you can see the difference...The lines are moving still, but aren't jumping all over the page like the picture before it. I think the picture pretty much explains itself. You can obviously tell between the two that one is more "chaotic" than the other. It's just so weird to know your daughters' brain is behaving so erratically. Especially since there is virtually nothing you can do.

Justin aka DADDY turned 25 this weekend!!

2009-09-07T18:21:00.006-05:00

We've been pretty busy this weekend. Justin turned 25 on Friday and we went out to dinner. Then on Saturday I had a surprise birthday party planned for him! And on Sunday we all went to Santa-Cali-Gon Days! It was busy, but lots of fun!

Picture Post

2009-08-25T09:53:00.004-05:00

Nothing new is really going on in the Fields' houshold....lots of appointments, busy busy busy. Ayva has a feeding eval on Thursday and next Monday, Anna starts aqua therapy! So I will update again after those exciting things and let everyone know what went down....

Terrible, Terrible news...

2009-08-21T21:57:00.003-05:00

A fellow triplet MoM is going through something no one ever wants to. She is watching her precious baby suffer and praying for a miracle. Please keep sweet little angel Annaleigh in your prayers tonight, she needs all the prayers she can get.

www.threecheersforbabies.blogspot.com

Our 1st Trip to the Zoo!

2009-08-09T11:05:00.003-05:00

Last Wednesday we took the kids to the Zoo for the first time! It was REALLY hot, but we had fun anyway!

Not good news

2009-08-06T10:00:00.003-05:00

Ayva had her appointment w/ her Neurologist yesterday. He gave us the results of her EEG from the Tuesday before last. It was not good news. But let me first go into the long story of what happened before yesterday.

Monday Ayva woke up and was acting strange. It seemed like her hips hurt and she cried and jerked every time you moved her. So I took her to the chiropractor and he adjusted her. It seemed to have helped but she was still acting strange. So I had a feeling that she was having seizures again. It was just a gut feeling. I called and her Dr. was out of the country. The scheduled her for an EEG for the next day and would at least tell me if she was having seizures again or not. Well not even 2 hours of us being home, the phone rang. It was her Neuro's nurse. Another Dr. looked at it and said that she was having seizures, but it wasn't Infantile Spasms. Which I thought was good because IS is the worst type of seizure a child can have.... Well yesterday we had an appointment with her regular Dr. to see what type of medicine we should try. He then dropped the bomb on us- she WAS having Infantile Spasms again. The Dr. that read it the other day wasn't trained to read EEG's. He was wrong. So our hopes were up and then of course we were let down. Anyway her Dr. is going to try Depakote and if that doesn't work she will probably go on the Ketogenic Diet. I hope we don't have to go down that road. We shall see...

We also took the kids to the zoo for the first time yesterday after her appointment. It was really fun and REALLY hot. I will post some pics later... I'm not really in the mood after all that... I think a nice big bowl of soul-healing ice cream might make me feel a smidge better....but probably not.

Phone pics

2009-07-31T13:28:00.006-05:00

Just posting some pics that I took with my phone...

Justin and Me at the park.

Justin at the park.

Justin all tuckered out.

Ayva all tuckered out.

Ayva all bright-eyed.

Anna in brother's hat.

Ayva at the park.

Anna "hugging" Justin.

Anna at the park.

Anna: "Anyone up for some Left 4 Dead on X-Box?"

Anna can't get enough of her paci's!!

Anna also loves her toes! Yummy!

Anna at the park w/ mommy's sunglasses.

Ayva at the park with mommy's sunglasses.

Anna today after the chiropracter....exhausted.

Justin on a bike!!!

Fun in the BALLS!!!

2009-07-29T11:22:00.004-05:00

Justin took the kids' ball pit out of the garage the other day and put it in Little Justin's room. Anna and Justin LOVED it! And now everytime Justin goes in his room he says, "BALL!"

Justin's 1st Haircut

2009-07-21T09:58:00.004-05:00

On Saturday we took Justin to get his first haricut. We took him to a kids haircut place and it was expensive, but for the first time, it was a cute place.

Before

He didn't like her touching his head!

He did get to sit in a Yellow Hummer like Grandma Dee Dee

After

Catching up!

2009-07-16T19:36:00.004-05:00

Just thought I would catch everyone up since I've been a little MIA lately. The girls got their DAFO's (leg braces) last Friday. They are to help keep their feet from turning inward and for overall support.

This is the best pic of Ayva I have been able to get with her braces on! LOL.

Here is Anna with some shoes I bought to go over the braces

The kiddos turned 20 months this Wednesday! I can't believe only 4 short months until they are 2! That sounds crazy to me! Here are their stats for their 19 month check up (which they just had on the 10th. Ayva was in the hospital when their 18 month was scheduled and I couldn't get an appt. until then)

Anna: 17 lbs. 10 oz. Height: 29 1/4 Head Circ.: 17 1/4

Ayva: 18 lbs. 4 oz. Height: 28 Head Circ: 17 1/4

Justin: 20 lbs. 3 oz. Height: 30 3/4 Head Circ: 17 3/4

They are SOOOOO small for their age. Under 3% for everyting- except for Justin's head. It finally made 3%. Hey...it's a start, right?

In other news, I've been taking the girls to the chiropractor and he's been helping with their tone and other issues. They have been doing really good and I'm glad I let my mom talk me into it.

Anna is standing great with the braces on. She is crawling everywhere and is sitting up for almost a minute unassisted!

Ayva is sleeping MUCH better. She only wakes up about once a night now! She is happier, smiling and even laughing a little. She is getting better control of her head and is lifting it up off the ground more each day!

Justin is still getting into everything! He is running everywhere and talking up a storm. He is in the stage where you can say, "Justin, say_____" and he will! It's really funny! He has also figured out how to take his clothes off in his bed....and I think it's only a matter of time until he learns how to take off his diaper!

Our 4th of July

2009-07-06T14:56:00.003-05:00

We had a GREAT 4th of July this year. I think it was the best one yet! We always go to Parkville and watch the firework show, but this year we drove ourselves and took the kiddos and chairs. It went SO good, and I'm glad the kids all did so well! I am SOOOO glad it didn't rain on us....because it really looked like it was going to...but it just missed us and we all stayed dry!

Random pics

2009-07-03T11:26:00.003-05:00

This morning was SO funny. Anna and Justin were fighting over who could be in this box and finally they got in it together....sharing...it's progress.

Then after a while Justin got tired of the box and left it all to Anna!

The best 4th of July pic I could get...

HAPPY 4TH OF JULY EVERYONE!!!

This and That

2009-06-29T15:18:00.008-05:00

Justin learned a new trick...

Silly stuff, right? Anyways I thought I would just put some random videos that I haven't uploaded for a while and some random pictures too! ENJOY!

Anna and Justin hugging

Ayva zonked out...

Justin trying to swing with Ayva

Justin's new way of climbing into the computer chair with you

Anna in the baby pool in our backyard

Justin at the spray-ground

Anna standing up against the baby gate

Justin playin the drums

Justin can say "Ashtin" (more like Au-gee)

HAPPY BIRTHDAY AUNTIE ASHTIE!!!

2009-06-27T06:58:00.005-05:00

glitter-graphics.com

HAPPY 15TH BIRTHDAY ASHTIN!!! YOU ARE THE BEST AUNT AND SISTER WE COULD EVER ASK FOR AND ARE SO GLAD YOU ARE AROUND SO MUCH, BECAUSE WE LOVE YOU!!!!!!!

Happy Father's Day

2009-06-21T21:08:00.004-05:00

HAPPY FATHER'S DAY TO THE MOST WONDERFUL FATHER!!!!! WE LOVE YOU!!

New Photography Blog

2009-06-20T15:18:00.001-05:00

HEY EVERYONE!!!! GO CHECK OUT MY NEW PHOTOGRAPHY BLOG!!!!

WWW.SARAHFIELDSPHOTOGRAPHY.BLOGSPOT.COM

Mini Photo Shoot w/ Ashtin

2009-06-20T07:32:00.004-05:00

I got to do a little photo shoot with Ashtin last night after the kiddos went to bed. She looked Sooooooo pretty last night. She had her hair and make-up all done and she looked SO nice. Here are some of the pics that I took!

And here's one of her and me that Justin took!

I LOVE PHOTOGRAPHY!! I wish I could be a professional photographer!

Thanks Ashtin for letting me take your picture!!!!

I am one proud Mama.....and a sad one...

2009-06-18T19:59:00.004-05:00

My strong baby girl, Anna, sat up all by herself today!!!! Usually she can sit by herself, but leans WAY over and ends up biting her toes. But not today- today she sat up like SUCH a big girl! I was SOOOOO proud of her. I unfortunatly had a memory pop into my head of about this time LAST YEAR of a picture I took of her learning to sit up. She was 6 months back then, and was doing excellent on her milestones (they all were). I can remember back to that time and thinking how wonderfully everything was going- only to have our worlds rocked by Infantile Spasms. I remember how content I was in that moment. Seeing all three of my miracle babies learning, growing. They could almost sit, they could follow objects with their eyes, they could hold their heads up.... and 2 months later, all that was taken from them quicker than an instant. My heart aches when I think at how happy our lives were. Blissfully naive.

And then of course I came across some pictures of Ayva from April 2008. She was so awake. I just look at her eyes then and it truely make me so sad. I just sat and cried while I stared at her. Beautiful innocence.

Then something changed. Seizures made her a whole different person. She didn't have that innocent look anymore- it was more of a confused-soul look. I feel like I could see her asking me "Why? Why Momma?"

She was learning to sit too.....

But now my baby is back. Each day I see more of the old Ayva coming back. It will take time. Some serious time. It is like she is starting all over again. Learning, doing, feeling...

Hopefully with time she will be the happy little girl I always wished she would be.

19 Months!

2009-06-16T09:30:00.006-05:00

The babies turned 19 months yesterday. I can't believe they are only 5 months away from being TWO!! Where did the time go??

Really not all that much going on around here. The girls will be fitted for new braces on Friday.

Ayva is doing better, she still is working on getting her appetite back and losing all the weight (mainly in her face) from the ACTH. She is still seizure free-WAHOO!! And she is starting to smile, coo, look around, and move her arms, legs and head more. I am so proud of her!

Anna is doing great! She is army crawling (and has been for some time!) and is just starting to get up on all fours! Last Thursday in therapy she took two steps cruising along the couch to get a ball that she saw! That's big stuff for her!! She is SOOOOOO close to sitting, but gets distracted by her feet (she always wants to bite her toes so she just leans over and bites them instead of sitting!). She is working on getting into a sitting position and laying down w/o falling down, and is doing quite well! She is talking up a storm and is copying lots of things we are saying!

Anna w/ her shampoo-doo

Aunt Ashtin shows us her new way of carrying a baby...

Justin is ALL.OVER.THE.PLACE. He is climbing on everything. He says a ton of words, and has just added "Ah-tee" or Ashtin to his vocabulary. He likes to eat, but only when he is feeding himself and is somewhat resembles what you are eating. He listens SOO well (when he wants to). Yesterday I told him to take off his socks and he did, then I told him to take off Anna's socks, and he did. And then I told him to take a paci to Ayva and he took it over and put it in her mouth for her!

He climbed up there all by himself!

He LOVES giving kisses. Especially to Ayva. Ever since she came home from the hospital he gives her at least 10 kisses a day!

We got Justin a "Harness Buddy"- aka. a baby leash yesterday. It looks like a monkey backpack. I always told myself that I would never buy a baby leash. Well life with multiples doesn't really work well with two who can't walk and one that wants to. SO he gets what he wants- to walk, and I get what I want- holding onto him so I don't have to chase him!

Day 47 of seizure freedom!

2009-06-13T07:54:00.003-05:00

Today Ayva has been seizure free for 47 days. These days have been WONDERFUL! I can't even remember what it was like to watch her have seizures all day (I do, really, but let myself forget). I am so happy that she was able to overcome this obstacle and is on the road to rehabilation. She has quite a way to go, but she has wonderful therapists and I just know in my heart that she will get there! Every little milestone we will celebrate like no tomorrow!!!

And since I posted how long Ayva has been seizure free, I thought it only fair to post how long Anna has been seizure free too!!!

287 DAYS!!! Can you believe that!! It was August 29th, 2008 that we got a follow-up EEG that told us Anna wasn't having seizures anymore (although we didn't see her have any for a week before that!).

We had a sick boy in the house yesterday. He NEVER just lays on the couch and doesn't play. But that is what he did yesterday. He just laid there. So right away I knew something was up. Then the puking began. He puked like 4 times yesterday. I gave hime some motrin and some juice and he slept all night. He woke up this morning in a MUCH better mood. He drank some more juice and is playing today. I hope it was just a 24 hour thing.

Trip to the Spray-ground

2009-06-05T18:22:00.008-05:00

There is this nice spray-ground near our house and Ashtin, my Mom and I decided to take the kiddos there today!

Anna and Ashtin

Justin eating some onion rings....yummy.

Ayva sleeping

Anna showing off her new swimsuit...with the help of Aunt Ashtin

Anna and Ashtin

Anna

Justin I think he was more interested in the fence than the water :)

HURRAY!!

2009-06-05T06:02:00.002-05:00

AYVA DOESN'T HAVE HUS!! HER TEST CAME BACK NORMAL AND HER DOCTOR THINKS THAT IT WAS ALL PROBABLY DUE TO THE INFECTIONS SHE HAD WHILE IN THE HOSPITAL!!!!

HURRAY!!

hospital pics...

2009-06-02T15:52:00.004-05:00

Thanks Ashtin for helping me with my phone pics!!

Daddy and Ayva in the ER at 230 in the morning (we got there at 530 pm!)

Daddy and Ayvie

Sleeping...

Julie came to visit us in quarrintine...she didn't have to wear the masks, only the nurses. cough**hypochondriac**cough.

Welcome back...

2009-06-01T18:40:00.003-05:00

We are home. Ayva was discharged on Thursday and will be following up with Nephrology (kidney dr's) and we should know hopefully this Thursday on her follow up appointment with Dr. Rene (that's his first name, his last name is hard to pronnounce) what the problem all along was. It was one of these three things: HUS- a blood disorder where your blood cells get broken down and you end up having problems with your kidneys. TTP- a blood disorder where your blood cells get broken down and you end up needing to exchange plasma in a very difficult way and will NOT be fun. OR it could have all been caused by ACTH and the many infections she aquired while on ACTH in the hospital. I'm hoping it's the last one, but you never know with Ayva. We've noticed she likes to keep you guessing. Anywho, otherwise we are SO glad to be home. She is just now starting to act like her former self (although she had seizures when she was her former self and now she isn't!! So more like her former- former self!! LOL) I am SOOO excited she became seizure free after the ACTH/Vigabatrin/Topamax combination!! She has been seizure free for 4 weeks now!!! THANK GOD!!

Yesterday we took the kiddos to a spray-ground near our house and Anna LOVED it! I wish I had my camera because she got soaked and just laughed and laughed. I sort of felt bad that she wasn't able to run through the water like all the other kids there, but I kept telling myself that one day she will run and play....one day. I also felt bad that little Ayvie was catching up on some much needed Z's in the shade w/ Grandma. I can't wait until she gets to be where Anna is (catching up wise, I mean.) And Justin, of course, the only one who COULD run through the water and play was too scared to!!! The sound of the running water makes him scared!! He's so silly!

Here are some pictures of last week. Auntie Ashtin took them while I was still in the hospital with Ayva. (don't ask me why Justin is running around with no clothes on!)

This is Anna in her new chair. It's a Kimba. She can use it as a seat and it also goes on a stroller/wheelchair type thing. Ayva will be getting hers sometime next week.

She likes to point her toes like a ballerina!

Justin

And if anyone can tell me how to get the pictures off my AT&T phone (its a VU) I could post some hospital pics of Ayva.

Quick update

2009-05-28T21:09:00.000-05:00

Ayva is finally home. She's ok, but will need follow ups. Update more later.

Limbo

2009-05-25T11:47:00.002-05:00

We are pretty much in a state of limbo at the hospital. Yes, you read that right. Ayva is STILL in the hospital. This Wednesday will make it three weeks. :( They still have no idea what caused all of these things to happen, but will be followin up with her **when** she goes home. Her blood levels are remaining stable, but on the low side. Her potassium is still low, but is on it's way up and is pretty close to normal. Her sodium came down and is still high, but is also close to normal. Her BP's have been excellent (thanks to 2 BP meds!). SOOO as soon as she can stabilize her electrolyte levels (her potassium and sodium in particular) by herself, she can go home!!!! I am thinking it will be Wednesday or Thursday, but who knows! Ayva's last ACTH shot will be Tuesday~~ thank God! Even though it made her seizures go away, I will always call it the shot from HELL!! Other than that, our lives have pretty much been on a hiatus. Justin has been staying home with the Anna and Justin and you can tell they miss their mommy and sissy. They just aren't acting their usual happy selves.

Anyway, I just want to thank everyone who has been supporting us and helping us out during all of this...Mom, DeeDee, Grandma Dean, Julie, Debbie, etc. We really appreciate everyone who has prayed for Ayva and can't thank you enough. I will update again if I get anymore news and hopefully it will be from home, with our little fighter, Ayva.