Live Love Laugh

update on us

2010-12-27T14:00:00.002-06:00

I haven't been on here for awhile as most of you can see because of lack of posts. Well I am sad to say we lost our sweet baby girl almost 8 weeks ago. I can not believe she is gone, I am an emotional mess and my life has forever changed. I am in the process of starting a new blog to share my emotions, thoughts, fears, and my new life with you there.

My blog will be located at:

http://shegrewwings.blogspot.com/

I hope you will join me on my on new emotional healing process

34 weeks pregnant

2010-09-13T19:04:00.003-05:00

I can not believe I am already over 34 weeks pregnant. Time has flown by. I only have two more 17P Progesterone shots (they hurt so bad but they seem to be working so far).

I go to the doctor every week for a NST and I have my next u/s next week. I can not wait to meet our baby girl.

I have only gained 6 lbs so far although I think this week I may have added 2 more to that my feet are swollen again since it has been hot here again. Although by the end of the week I think it is suppose to be back in the 70's.

I can not wait! I hope everyone is doing well, sorry I haven't posted in awhile life has been crazy with going back to work, daycare, therapy, doctors visits, and being so pregnant!

Tball, and more

2010-07-07T16:02:00.003-05:00

So Sean started Tball a few weeks ago the first game was a little rough but with each game he is getting better and better.

It is so hard to see him run after hitting the ball and fall down. He always gets himself up but I wish he didn't have to fall down either. We are waiting to get his new AFO turbo where we can use it as an AFO or an SMO.

Dr. G. wants us to wear the AFO when he is active which for a 4 year old boy is 100% of the time he is never not active or he never sits still.

We are back to getting PT weekly because of the falling as well. It just stinks that every time he has a growth spurt he gets pushed back the damn strokes fault.

He has to wear dual SMO's right now until we get the new turbo but it will be a few weeks, and he has to wear an AFO night time brace. We have to bribe with stickers and ice cream to get him to wear it all night.

Other than that Sean is doing great we are about to finish this session of swim lessons and we start a new one next Monday but they are moving him up to levels because he can do everything he needs to. He is going to be with 5 and 6 years olds. We had to get special permission to move him up since he is not old enough. We are so proud of him.

As for the baby and I we are hanging in there. I see the doctor every two weeks because I am high risk and I get my shot every week.

We just had an u/s and my cervix is still long, thick, and closed at 4.6cm which is great news. I go back to Loyola for another my f/u u/s on the choroid plexus cyst on her brain in less than a month! I just pray that it is gone.

Until next time here are a few pictures of our little girl.

I don't have PINK EYES

2010-06-11T14:46:00.003-05:00

So yep Sean has the fun, and lovely PINK EYE. Went to the doc this AM. The poor guy woke up to his eyes crusted shut.

He kept telling me he didn't want to go to the doctor. But I think that is because I must have freaked him out about it. I had to go to the doctor yesterday for my weekly shot and he was hyperventilating about shots and how he can't go or watch it.

Luckily my aunt was around and could watch him. Next time I guess I will just say mommy has to go to the store so we can go peacefully.

I felt so bad and than since we had to go today he was kicking and screaming too. But he let me put the drops in his eyes so far at least:)

We is getting so big he weighs 44 lbs and is 41 inches!

Its a girl

2010-06-01T15:42:00.002-05:00

We are so excited! We just got home a little while ago sorry it was a long day. We had to meet with the geneticist first for an 1.5 and then we had an u/s for an hour. They took over 100 pictures, and then we met with the high risk doctor.

There are no signs of an in utero stroke, or closed lip schizenphaley like my son has which is great news!

However the baby does have a cyst on the brain it is a choroid plexus cyst. They offered and told us to think about an amino. But they said our risks for having a baby with something wrong do to the cyst is 1 in 1000. I don't know what to do or to make of all of this.

We are scared and nervous they told us that the cyst may go away on its own after 24 weeks on. Has anyone ever heard of this or experienced it? What should I do?

I only got a profile shot of the 100 pictures taken:) Babies heart beat was 160 and weighs 10oz!

7 more days

2010-05-25T10:39:00.002-05:00

So I still have to wait 7 more days to hopefully hear those joyous words of you are having a healthy baby and it is a boy or it is a girl.

Part of me is so nervous but I can't wait to know if things are still looking okay. The peri that we are going to has seen on u/s what has happened to Sean's brain which is reassuring and frightening all at the same time.

I go for my first 17 P shot this Friday. I was suppose to start this past Friday but I couldn't get the medicine in time. My doctors office only gives them out on Fridays because that is when there are the most nurses in. I am so scared because I know it is going to hurt but I will suck it up to hopefully keep this little one in for as long as possible.

7 days and counting.

I can not believe I am 17 weeks already

2010-05-15T11:46:00.003-05:00

Wow has time flown by I can not believe I am 17 weeks already. It is crazy how fast this is going:) The only thing going slow is waiting to go to the high risk peri and know that things are okay and we are having a healthy baby and if the baby is a boy or girl. Only 17 days to go!!!!

I go to my regular OB this week and will be starting the progesterone 17 P shots. I am sure that will be lots of fun, but whatever will hopefully help keep the baby in longer I am game for.

I have not gained any weight as of yet I am still down 8 lbs..... I know the weight will be coming though:)

I am feeling flutters all of the time and I have felt two kicks so far which is nice and reassuring.

Until next time the count down continues............................

Appt with a high risk peri

2010-05-03T12:20:00.004-05:00

So we are all set for our first appointment with the high risk peri. They called us and scheduled it for June 1st. We will be going every 4-6 weeks for an u/s and to watch the brain development because of what happened with Sean and the closed lip schizencephaly. We will be going to Loyola where the peri I will be seeing has actually seen this on an u/s before.

The first hour and half will be with a geneticist and the next hour and half will be an u/s and hopefully after they tell us everything is okay we can find out if it will be a little boy or a little girl.

So far things are going pretty well, I have lost 10lbs thanks to being so sick the first three months but now that I am almost 4 months I am feeling much better.

I did the NT u/s and blood work and I am a little nervous about my down syndrome numbers but the doctors told me to not worry about them now because we will be doing another test at 17 weeks and we can go from there.

My NT u/s results were 1.2mm which are good.

My trisomy 13 and 18 were 1:19.501

My down syndrome 1:424 ( every where I have read people have 1 in 10,000, or 1 in 2,000

But I am just going to relax, breath and wait no matter what we will love the child the same it is just nerve racking.

I know some people have odds of 1:100 or less but with Sean my numbers were much higher.

We are going to have a little pumpkin

2010-04-14T17:17:00.008-05:00

So you may wonder why I changed my background to pumpkins......

Well we are going to be having a little pumpkin this October!

We are beyond excited I am just about out of my first trimester and baby's heart beat today was great. It was 178, and measuring great so far. I did the NT scan today and I feel pretty good between my regular OB and the high risk Peri that things are going to go more smoothly this time.

I have been sick a lot but every bit is worth it. We are all very excited and Sean is excited to be a big brother too!

More to come soon:)

If you are my face book friend don't post yet that will be coming soon. Thanks:)

Sorry for not posting in so long

2010-03-20T13:21:00.004-05:00

Life has been crazy crazy crazy.

Between Sean therapy, school, and being sick on and off I have not had much time for anything. No studying time, no sleeping, and no relaxing.

Between work, school, Patricks surgery this past week life as we know it has been super crazy.

We are on spring break this week and I hope to be able to just relax and enjoy the week. I do have to work a few nights but there is no school for Sean or I.

We have a few play dates planned and some therapy sessions to do.

I have some exciting news I am going to be an Auntie. Sean is going to have a cousin my brother and sister in law are expecting this August. We are so excited!!!

I will post more soon I hope. Not sure if there is anyone out here that still reads this? Here are a few new pictures of Sean I can not believe he is 4 already! Where has the time gone?

Happy 4th Birthday Sean

2010-02-08T00:04:00.003-06:00

I can not believe Sean is 4 already! Where has the time gone! Here is a recent family picture of us! My husband never smiles or keeps his eyes open in pictures. At least Sean and I look cute:)

I will post more next week sometime after his party. It is on Valentines Day!

Stuttering

2010-01-29T16:09:00.002-06:00

So I have a few questions for bloggers out there, what is the deal with stuttering? Why do kids do it? When did it start for you? When did it stop? And how do you stop it?

Sean has been starting to stutter it has really only happened in the last few weeks. At first we didn't think anything of it but now he is doing it more and more.

I am concerned because is it a sign that something else can be wrong in his brain function or is it just stuttering?

A few people that I have talked to said it could be either. We are waiting to hear back from his speech pathologist from school and a private speech pathologist that specializes in stuttering.

Then after this started he threw up a couple of nights ago for three nights in a row. The scary thing is that it only was happening at night.

I spoke with his pediatrician and he told me not to worry that sometimes kids go through development differently. However everything I look at online about stuttering is that it starts around age 2 or 2.5 and ends by 4.

Sean is about to turn 4 in a week and half.

Am I just be crazy about this or should I push back?

Playing at McDonalds

2010-01-18T13:21:00.002-06:00

So today Sean is off of school and he wanted to go to play at McDonald's we went and of course it was crazy because every child is off of school today and wanted to go play at McDonald's.

We were playing just fine until some older kids came and were running all over the place not caring if they ran into the little ones they just pushed them out of the way.

Sean got pushed and pushed hard he fell down and then one of them put his foot on Sean to move up to the next level. Sean was screaming and crying for help. I went and helped him, sure I looked like an overprotective mom for going up the tree house to the next landing to get my child to make sure he was okay.

He is fine more scared then anything. The worse part is the older kids did not say sorry or ask if he was okay but were laughing at him for crying and that his mommy needed to save him. At that point we decided to leave because it was not worth risking them to push him again. BUT the absolute worse part is there MOTHER was there and witnessed the entire thing she was right next to me and she did not ask if he is okay or say sorry for the way my boys acted or yell at them that they need to be more careful. I bit my tongue because I wanted to say your boys are to old to play at McDonald's in a little kid tree house. Some people need to teach there children better manners but I guess in this case the apple didn't fall to far from the tree.

Sean was so upset he cried himself to sleep which he normally NEVER takes naps any more. Poor guy!

Now the waiting game

2010-01-11T22:53:00.003-06:00

So I went to the ob today just for my normal check up and he said I am sure I will hear from you soon. Told me to call once I find out and they will check all of my levels and probably put me on progesterone just like last time and than I will get the 17P shots weekly for most of my pregnancy. Now just waiting till test date and AF comes or not. But enjoying the wine and trying to just have fun and relax.

According to my temps I am on DPO 4, AF is due around the 22nd so I am going to try and wait to test until after AF is due. The temps should tell me something hopefully too.

My mother in law was asking tonight when another one will be coming we haven't shared that we are trying with many people so this is where I can write about it. I have a hard time keeping secrets, but I am trying too.

Taking a hurtle and plunging in

2010-01-07T12:52:00.003-06:00

So we have decided to start trying for another baby. I know I didn't know when this day was going to come but I am finally not as scared and nervous as I have been since we found out about Sean's stroke and everything else.

So I am on prenatal vitamins a million times more prescription folic acid on top of the prenatals per the high risk ob. Once I get pregnant I will be put on blood thinners to for extra precautions and will be seen by both the regular OB and the High Risk OB. A little more reassuring.

So hears to a new year and new me and not letting myself worry to much and have fun in the making!

Anyone else scared out there? We are about to turn our lives upside down and this picture is so cute of Sean and makes me laugh every time. He was at my aunts house waiting to go sledding! Sean will be 4 years old a month from today I can not believe he is almost 4. He needs a little brother or sister and now that he has less therapy we have to take him to. We take him to two where before it was five and now he gets the other three at school.

And I want to go to nursing school but I have a few more classes before I can get into the program so I would rather have a baby before I get into the program instead of waiting until after which the programs can be either 2-3 years!

So cheers to 2010 and baby making good news:)

Happy Holidays!

2009-12-25T13:58:00.012-06:00

Sorry no blogging lately we have been super busy especially with the last two weeks since Sean has been home from school. I hope everyone had a wonderful holiday season and hope everyone has a Happy New Year too!

Christmas morning

Some cute pics!

Visiting Santa!

Making our first SNOWMAN:)

Sledding in the snow for the first time!

Chocolate covered pretzels that I made!

Decorating his room and tree

Making cookies for Santa and friends

Decorating a gingerbread house

Making ornaments with paint and patience:) It is his hand and I made each finger into a snowman.

We are finally not sick any more knock on wood

2009-12-01T09:24:00.002-06:00

So Sean is finally feeling better and becoming more like himself. The swine flu really was rough but we are all okay now.

So there is not to much new to report other than I passed my CNA State Board test (I wasn't worried about it)! I got a job!

So I think I am going to get a North Face Fleece for Christmas from Patrick. But I don't know which one to get. Which is the best one for living in Chicago. I would love for it to be my jacket for the winter. I really like the ones with hoods to yet I can wear a hat too. Please let me know if you have one which one you have and if you love it or hate it.

I am almost done shopping! Yeah:) How about everyone else?

Also anyone have any ideas for great grandparent gifts ideas? We have done the mugs, pictures, etc I want to do something different this year.

Thanks!

I hope all is well with everyone else! Oh and the comments on when are you going to have another baby are starting again......

Swine flu= Positive

2009-11-16T15:51:00.001-06:00

So Sean swine flu test came back positive:( Please pray that he will not end up in the hospital.

Now if we can get some sleep tonight to mommy and Sean will feel better I think.

Fevers suck maybe H1N1

2009-11-16T07:40:00.002-06:00

So I got home from work on Saturday night, changed out of my scrubs, and went to go give Sean a kiss, and he said "hi mommy I missed you" (at 11:30 PM) mind you he was put to bed around 7:30.

He was burning up so I took his temperature it was 103.1. Gave him some Tylenol and water. He fell asleep pretty quickly.

Yesterday all day he had a fever and the meds would make it drop and then come right back up. I worked again last night got home around 11:30 PM and he was awake and awake all night he just fell asleep for me around 7:00 AM this morning.

It is going to be a long day and I can not wait to call the ped when they open. He has a fever, running nose, cough, and not himself something is going on, I just hope it is a cold and not the actual swine flu!

Still no seizure study results either hopefully I will get those today too.

Update on the sleep deprived EEG

2009-11-11T13:45:00.002-06:00

Well we made it through a very long night and day. Patrick woke Sean up at 2 AM and at 4 AM I got up and finished giving him his bath.

He feel asleep for two seconds around 5:30 AM and we left the house around 7:00 AM got some bagels to eat on the ride down to the hospital. We got there about 8 and left around 10.

He was a little antsy at first but we got him to fall asleep and we got a good hour of reading his brain activity. The tech did tell us she saw activity and I was telling her how he had a stroke before he was born and that he has a whole in his brain too. She asked was it on the left side and I said yeah. The activity is on the left side now we just need to wait for the docs to read it and tell us what we do next.

We will probably have to add a second medication.

Seizures, Seizures, Seizures GO AWAY

2009-11-08T14:12:00.003-06:00

So Sean as you can see from my title had more seizures this past week. He had 3 with in 36 hour period and they were a little different than his usual ones we have seen.

Two of them happened at school and one at home. His eyes rolled to the back of his head which they have never done before. It totally scared EVERYONE who saw them his aid, teacher, and me.

I called the neuro and they had us come in on Thursday the seizures happened Tuesday and Wednesday. We can not figure out anything that triggered them he is not sick no fever, cough, sniffles, nothing, hasn't had a growth spurt not sleep deprived.

We are nervous because of the new feature of his seizures the eye rolling. He is on trileptal right now of 4 ml twice a day and now he is taking 5 ml twice a day.

He has lost a couple of pounds since the last visit which he is just thinning out, his neurological exam was the same as last time which is good news.

We have to take him in for a sleep deprived EEG this Tuesday. We have to put him down to bed at 7:00 tomorrow night and wake him up at 2:00 AM and keep him awake until all of the leads are on his head. How are we going to do this and how I am I ever going to sleep again.

I got a part time job at the nursing home which I am excited about (that is another post) and have to work tomorrow from 3-11 PM and than have class Tues night 6-10 PM and work Wed 3-11 PM, class Thurs 6-10 PM and Fri AM I take my state boards test. Sat I have my Math test and I am working 3-11:0)

Life is definitely chaotic right now. I am stressed out.... to say the least!

Falling leaves and autumn fun

2009-10-21T17:22:00.004-05:00

So this week the weather has been beautiful it has been in the 60's so it is actually FALL weather. A few things Sean and I have been working on. Sean loves all of the falling leaves, jumping in them, walking on them to hear the "crunch", seeing the wind move them all around.

He also loves feeding the ducks and geese which we got to do the other day at the pond. Today we went to a pumpkin farm and it was great because it was before school got out so there was no big kids around.

We went thru a hay maze, a corn field maze, and much much more. I have been enjoying all of the extra time I have with Sean while I am still home.

I finished my first nursing class now I just need to sit for my board exam on November 13th. So I have been studying for that as well as my math class. I have a math test on Saturdays.

Tomorrow we are going to carve, decorate his pumpkin. More pictures to come! He picked out a Pirate Mr. Potato thing for his pumpkin I am sure it will turn out cute! Sorry for the lack of blogging but between school and therapies and all of the fun stuff in between we are very very busy!

Sean is now only going to go to PT once a month and OT every other week besides the OT, SPT, and Social worker at school so that will free up more of our time too.

Fall

2009-10-04T16:17:00.004-05:00

So fall is a GREAT time of year I love the fall. We get to play outside with out freezing or sweating most of the time right. But here in Chicago FALL can be different every time.

It has been so cold we have had to use our new HEATER already. At least today it is 60 degrees outside right? Here are a few pictures of Sean from over the weekend. We are so busy for the rest of the month and I feel as if I never have time to post.

I turned 30~

2009-09-24T17:30:00.001-05:00

Well I have been super super busy with school, lab, clinical, therapy visits and doctor visits for Sean to take up a lot of my time.

But I just turned 30, I don't feel any different but everyone says that I should.

I am so tired by the end of the day going to school Monday thru Saturday is A LOT of work but it will be worth it.

We have also had a string of bad luck around the house.

First our dog was sick and costed us $700.00 I am glad he is okay but that is a lot of money

Second our A/C broke, and our furnace is on its last leg too so we jumped in and are getting a new A/C and Furnace put in in this weekend

Third our dryer broke but hopefully the part we ordered will fix it.

Fourth our freezer keeps popping open on our fridge.

The joy of owning a home sucks right now.

Well that is all I got right now have to get to my homework. We have at least 1 test a week.

Back to school times 2

2009-09-01T15:15:00.003-05:00

Sorry I have not posted in SO LONG. Life has been hectic, and crazy as we all know it. Not only did Sean start school again, I am in school again too. I am going back to school to become a Nurse. I am so excited, but I know I have a long way ahead of me, but I have the desire and passion to do it and the support from my husband and family. Here are a few pictures of the night before school, since I am at school already before he gets on the bus and it rained for the first few days of school so Patrick couldn't take a picture outside. For the last few years I have thought about it and now is the perfect opportunity for me since I am unemployed.

I want to work with kids and help make a difference and now I just need to get there. So if there is a long time in between blogs it is because I have a TON of studying and homework to do.

I have only been in school since last Monday and already had two tests and read over 12 chapters. Today was my first lab, where we fed someone, and got fed blindfolded, take pulse, and blood pressure manually. My next test is on 10 chapters!

But at the end of my first class I can get a job at the hospital so I am excited about that too and at least I will have hands on experience for the rest of the classes.

So till next time, lots of reading:) Sean is keeping his glasses is on and we are still waiting on his SMO's and night brace to come in.

Our new man in his new glasses

2009-08-21T17:41:00.001-05:00

Here is a great picture I got of Sean in his glasses. He is actually taking to them quite well and has been keeping them on. I will update more soon it has been a crazy few weeks and school starts this week.

I need $$$$$ to start growing on trees

2009-08-18T09:34:00.006-05:00

So we met with a Dr. G yesterday and found out that the braces Sean has the AFO, and the SMO's are not doing it for Sean. The AFO is causing bruising around his leg and he is still falling a ton.

We were told he needs to get bilateral custom made smo's and a custom made night splint for his right side.

We also found out this past week that he needs glasses which we spent $219.00 I can only imagine what we are going to have to pay for all of these braces.

But we have to do them it is something he needs even if we don't have all of the money to pay for it since I am still unemployed. More on that to come.

Thanks for letting me vent and freak out about money. Then again who doesn't freak out about money.

Here are a few cell phone pictures of him trying on glasses. We should get his glasses later this week and we also get casted late this week too.

Things that make you go hmmmmm

2009-08-09T16:47:00.003-05:00

So my mom has been having some back hip issues. So she has been to all of these different types of doctors. I went with her yesterday and we found out that her ANA was positive.

Well my ANA is positive to and the doctor said that it is passed down through pregnancy and could potential cause problems and that both of us..... especially me should get tested further. I made an appointment with him and told him about how Sean suffered a stroke. He said most likely Sean's ANA could be positive to and that could be why is protein levels were so low. We never found out why they were low.

He said that a positive ANA can mean a lot of different things and is not saying this is why Sean had a stroke. But it has definitely peaked his and mine interest in doing further testing on me to see what is going on.

I had my ANA tested well before Sean was conceived and even before we were married. I had mine tested back in 2001 when I was having a lot of issues and it was right after my grandma passed.

They did some basic tests back then and everything can back in normal limits except for the ANA and now they have a lot more tests they test for when a positive ANA comes up.

So this is my things that you make you go hmmmmmm. Got to go make dinner!

Therapy garage sale find

2009-08-02T11:09:00.003-05:00

So Sean and I were driving home from the pool on Friday and passed by a garage sale and found a little tikes climber.

I immediately stopped and looked at it. I got it for $10.00 and could not pass it up. Here a few pictures of Sean playing on it from this morning.

It is a great therapy toy because he has to use both hands to climb and tummy control!

Long time no blog

2009-07-21T15:12:00.003-05:00

So I know it has been awhile since I blogged. I am out of it lately. Sean has been sick and still is, Patrick is sick and I am just blah.

I am still unemployed and still looking for a job. I love being home with Sean but I know financially we can not do this forever although I do wish we could some how.

I know things will turn around, but it gets depressing after awhile looking and posting for jobs and stressful on top of it all.

Luckily I have an amazingly supportive husband and family and friends to surround me.

This weekend we are going camping so I am excited about that, lets hope the two boys in my life are feeling better before than!

Appointment set for Perinatologist

2009-07-08T11:10:00.003-05:00

Well I finally decided I am ready to make an appointment with a perinatologist.

Since Sean was a preemie, the stroke, the hole in his brain and everything else my OBGYN and I decided it would be best for Patrick and I to have a consult before we are pregnant.

So I have some questions to ask already but I have never been to the peri and I know I will not be able to think of all of the questions I should ask.

My main one is I wanted to make sure we have done everything and every test to make sure that this won't happen the second time around.

But please help and let me know which questions I should ask.

Thanks,

Erin

Cutting the lawn with daddy

2009-07-06T15:29:00.007-05:00

So Patrick went outside this weekend to cut the grass and Sean said Mommy I want to go too.

We got dressed and he had to wear his fireman hat too. His grandma bought him a bubble blowing lawn more.

Sean told me he needed a lawn bag just like daddy..... luckily I had a brown paper bag from Jewel he could use to for it.

He helped daddy cut the grass and pick up sticks. Sean amazes me daily with all of things he can do and is learning.

He is amazing with how much he can do and everything he has overcome in his life this far. Here are to many many many more amazing things to come.

Happy 4th of July

2009-07-04T17:43:00.005-05:00

We just wanted to wish everyone a happy and safe 4th of July. Have fun and be safe while celebrating a great day!

Sean was scared of the fireworks last night especially the loud booms and tonight looks like fireworks may be rained out and not sure if we will go again but some of neighbors may blow some off.

Sean is getting so big and way to quickly. Just wanted to make this short and sweet and share a few new pictures of Sean from this weekend. We had a huge BBQ yesterday at our house and we are all still worn out and some of us a little hung over. Hmmm.

Be safe and enjoy this time with your family and friends!

Year 3 in review

2009-07-01T10:17:00.010-05:00

Here are some more pictures of Sean. Enjoy.

Year 2 in review of Sean

2009-06-29T15:30:00.010-05:00

Here you go. I know you were all waiting for it:) Year 3 to date coming soon.
Here are a few of the thousands upon thousands of pictures I have.

The first year of Sean

2009-06-26T10:46:00.007-05:00

Here are a few pictures of Sean's first year of life. I can not believe how much he has changed. Look for year 2 and part of 3 soon.

Sean fell and hit his head on the cement

2009-06-25T11:17:00.004-05:00

So Sean has fallen a lot lately and it is starting to make me nervous.

On Monday we played at the pool with Amanda and Leah, which was LOTS of fun. Sean wanted to play on the park afterwards and was climbing up the mountain climber and fell off and hit the back of his head. He was fine, he acted fine all night and the next day,

On Tuesday at school I get a call from the nurse and I said uh oh what happened. Sean fell on the cement and has a bump on his head, arms, knees.

Tuesday afternoon he got home and we went and saw the doctor I just wanted to make sure everything was okay. He checked him out and all is fine just a few bumps and bruises.

Yesterday he kept grabbing on to me or other people to catch his balance. Well this morning I looked at him and his one leg is a little longer than the other. The doctor and therapists told me this could happen especially since the stroke sometimes the effected side could grow slower. So now we get to do the stretching he loves oh so much (I wish) even more times a day.

Here are a few pictures from yesterday you can only see the bump/bruise on his forehead. It is smaller than it was the day before, the day before it was protruding from his head. And we are also waiting for an SMO for his right foot the effected since the AFO is causing bruising around his leg:(.

Introducing Sean the puppeteer

2009-06-25T08:47:00.003-05:00

Here is Sean at the library the other day being a puppeteer.

Dressed in style for the pool

2009-06-19T09:54:00.005-05:00

So Sean LOVES the pool this year. He can not get enough of it. It is almost like his sensory issues with the pool did a 180.

Last year he wanted to go in the water but didn't want to get wet so all he did was cry and if anyone splashed him he freaked out. This year he runs, sits, blows bubbles, goes down the big slide, the little slide, goes under, jumps into the water all by himself. He is much more confident and can not get enough of the water. He loves the water falls. He likes to jump into the water through the water fall, loves to splash and get splashed.

He says again again and again for everything it has to do with the water and this year when we have to go home is when he cries this year. I only have a few pictures of him because I can not take my camera in the water near the water fall and we go when DH is at work. But here are a few in his pool gear.

Oh we got goggles this year so he can look under water it is too cute. And he loves to take a shower before he gets to go in the pool. I remember HATING that part when I was little. I am just amazed on the difference.

A few favorite photos from our wedding day!

2009-06-12T12:30:00.003-05:00

I wanted to share with everyone a few of my favorite photos from our wedding back in the day!

It's Raining It's Pouring

2009-06-11T20:07:00.006-05:00

So you would think the rain we go away already and um maybe warm up since it is almost the middle of June. Go away 60's bring on the 80's or even 70's.

Here are a few pictures I took of Sean during and after the rain storms we have been getting.

He was singing too. To cute.

It's raining it's pouring the old man is snoring.

He bumped his head on a wooden bed

And couldn't get up in the morning

Day 11- Day 18

2009-06-09T12:03:00.003-05:00

Day 11 Tuesday June 2nd- No accidents

Day 12 Wednesday June 3rd- No accidents

Day 13 Thursday June 4th- No accidents

Day 14 Friday June 5th- No accidents

Day 15 Saturday June 6th- No accidents

Day 16 Sunday June 7th- No accidents

Day 17 Monday June 8th- No accidents

Day 18 Tuesday June 9th(today)- No accidents

He is such a big boy if we go some where he tells us when he has to go, at home he will just go in the bathroom and go. He has pooped on the potty every time he pooped this week.

I am so excited for my big BOY being potty trained!

I promise a non potty update next:)

Potty Update and Beach Ball Sprinkler Fun

2009-06-01T21:04:00.004-05:00

Day 6 Thursday went accident free

Day 7 Friday went accident free

Day 8 Saturday went pee and poop in his big boy underwear at the same time (daddy was watching him while I was in the shower) He tried to get in the bathroom I was in

Day 9 Sunday went accident free

Day 10 Monday today he had an accident on the bus today but besides that he has done really well.

I am so glad we kept up with it

I was hesitant on the beach ball sprinkler but he went all at it and loved it. He wouldn't run in his grass with out his shoes but I will take one sensory step in the right direction at a time!

Big Boy Underwear Day 5

2009-05-27T20:02:00.003-05:00

So Sean has been wearing big boy underwear for five days now.

On Saturday he went all day accident free

On Sunday he went all day accident free

On Monday he went all day accident free

On Tuesday he went to school, told the teacher he had to go potty, and had a slight (few dribbles) on the bus ride home. No other accidents the rest of the day

Today he went all day accident free till this afternoon and he peed all over the place and than cried and said he still had to go potty and than went poop on the potty and the rest of the night accident free.

Question is I know accidents happen but is he not ready for this? Some people are telling me that he is not ready if he has already had two accidents. He just forgets some times especially when he is playing and really into something.

What do you think. I think he is ready he normally always tells us he has to go. He pees and poops on the potty no problem.

So what do you think? Continue with the big boy underwear or go back to pull ups?

Welcome to McDonalds may I help you

2009-05-27T10:59:00.008-05:00

This is too cute.

Welcome to McDonald's may I help you?

Sean was so cute playing McDonald's at my aunts
weekend BBQ. It was funny too.

Enjoying the park

2009-05-26T08:53:00.005-05:00

So we have been going to the park at least once a day ever since he has felt better and when it doesn't rain:)

It is out of focus but I still think it is super cute but I am biased:)

Here are a few pictures from Friday at the park. I am impressed on how much he can do at the park, I have slight panic attacks at times because I worry about everything and think he is going to fall but he amazes me each time.

Climbing up the mountain, that has a dinosaur under it (it actually does but Sean says it is scary)

Life as we know it and more

2009-05-18T14:17:00.004-05:00

So there has been a lot going on with a lot of different aspects of my life. But just to name a few.

1. Sean and I have been enjoying the nice weather, while daddy is at work. We have been going to the park at the school close by. He rides his bike and I walk it is nice exercise that we can all use.

2. I planted tons of flowers this weekend. I planted them all along the front of our house. I dug up grass around a tree and planted more. I trimmed our evergreen trees/bushes. I still have a little more planting to do. When I am done I will post pictures.

3. Patrick, Sean, and I had ice cream cones last night because Sean ate cooked carrots. Gosh the things we can bribe ice cream and kids with

4. I am exhausted after along weekend of working around the house (the outside of the house that is)

5. I am exhausted just thinking about the inside of the house. Once I clean it is only a matter of a few minutes before it is dirty again.

6. Sean has two weeks left of school and than has one week off and we start summer school.

7. Sean is refusing to take naps but is Mr. Crabby Pants

8. I had a job interview today that I hope I get but there is only 4 spots and over 25 applicants. We shall see.

9. I took tons of pictures of Sean yesterday playing in the sand box which he loves to play in now, if I could only get him to use his right hand in the sand. Any suggestions?

10. Seans fav. song is the Old Man is Snoring for this week LOL

11. Sean is going potty on the potty all day now but doesn't always remind us he has to go when he has big boy pants on. We are getting there though!

Dr, ER, Breathing Treatments, Dr, and more

2009-05-14T10:45:00.002-05:00

So we are sick in our house Sean has strep throat on Sunday evening he had a fever of 103.2 and on Monday morning I called the pedi he brought us in looked him over did a rapid strep test and it was positive.

Started the meds and his fever kept coming back, his cough got worse and we started to wheeze. By Tuesday night he was wheezing and having problems breathing. His nostrils were flaring so we called the pedi and he sent us to the children's ER.

We got to the ER they took his temp it was over 102.8 with the forehead test, they gave him meds it went down, took us for a chest xray which he was a complete angel for (I was shocked since past experience with the chest xray were not so good)

After his chest xray we had to wait awhile and he was getting sleepier and sleepier mind you it was past bed time at this point. We finally got called back and they measured his breathing and it was at 92 and they want it above 95 so they had the therapist come in and give a breathing treatment while we sat and watched Thomas. He did great for most of the first treatment but after that it was nearly impossible but after four of us held him down he started to cooperate.

He then got albetural (sp) and oral pred. which giving to a child late at night was not a good mixture. He didn't go to sleep until after midnight and I had to get up with him every four hours to give a breathing treatment and he has been taking 5 different meds everyday now since and is starting to go stir crazy here in our house.

He has strep throat, viral bronchitis (sp), fever, runny nose, cough, he won't eat but at least he will drink Gatorade but only red.

Yesterday we went back to the doc for a follow up and he is still wheezing, fever, cough and etc is it ever going to end?

Littlest Heroes

2009-05-11T13:22:00.003-05:00

So I am on a message board and this was sent through from someone on it. I went and clicked on it and this is an amazing group.

The Littlest Heroes Project

Basically you can apply and a photographer will come to you and give you a free session and share your child's story. It is for all of us parents out there that have little heroes.

Here are some of the heroes that would be eligible.

Eligibility for the project:
Any child or young person (Infant-21) that is currently fighting or has fought or suffers from any of the following: Autism, Alopecia, AIDS, Bell's Palsy, Cancer,Chiari Malformation,Cystic Fibrosis, Cerebral Palsy, CHD,Childhood Stroke, Servere Diabetes, Down Syndrome, HIV,Immune System disorders and diseases, Kidney Disease, Muscular Dystrophy, Neurocutaneous Syndromes, Osteogenesis Imperfecta, Shaken Baby Syndrome, Sickle Cell Anemia, Spina Bifida, Tay-Sachs Disease, and other serious childhood illnesses and life altering disabilities.

Please check them out.

Update on Sean's Seizures

2009-05-08T13:08:00.003-05:00

So I spoke with the neuro and his nurse and we increased his morning dose to now be the same as the evening dose.

They think it could be something with his metabolism since he just had a huge growth spurt and is so active.

We have to monitor him closely and call if we see another one before Monday.

On Monday the neuro coordinator is going to call me and discuss EEG options and refer us to get his blood work checked.

But right now we got to figure out the correct dosing. So please keep your fingers crossed and pray we DON'T see another seizure.

Thanks for all the prayers.

Prayers Requested Sean just had a seizure

2009-05-07T16:08:00.002-05:00

So Sean just had a seizure and I am waiting for my neuro to call me back I spoke the nurse and she said he will call me soon.

I am totally freaked out and about to cry why can they just not happen.

His eyes blinked continuously, his lips chewing, and his left arm and hand jerking and I could not get his attention. I am ready to cry but don't want to cry in front of him.

Thanks in advance for the prayers.

AFO and SMO

2009-05-06T08:15:00.002-05:00

So we got Sean's AFO and SMO's last night and since he has had them on he has fallen at least 5 times while trying to walk, run, stairs, and play.

I know they take extra time to get use to but did this happen with your little ones?

Sean fell face first on the ground last night, granted he didn't even cry but he has a nice big red mark on his face that made me cry.

If this did happen how long did it take to get use to, or how did you get them use to them?

Thanks

Erin

I'm a stroke survivor

2009-05-02T22:47:00.000-05:00

Here is Sean attempting to say I'm A STROKE SURVIVOR! It is to cute but I am biased:) I tried to get him to blow a kiss too. The first video he is clearer. This was taken today.

Take 1

Take 2

I am going to attempt something like this when I send emails out to collect funds for the Heart/Stroke Walk this Fall.

Erin

Pediatric Stroke Awareness Day

2009-05-02T19:10:00.004-05:00

Happy post 100! Heres to another 100!

So today is Pediatric Stroke Awareness Day so please spread the word.

Sean and I wore our Big Steps for Baby Stroke tshirts all around today from therapy to all of our stops in and between.

I have also created a new blog for Pediatric Stroke Survivors and I am going to let people write there stories because knowledge is power.

If you are interested in learning more about pediatric stroke please visit the links to the right. There is a lot of pediatric stroke survivors.

In fact 1 in every 4000 babies suffer a stroke each year and I really think it is even more than that. That is just what we are being told.

So if you could please blog about pediatric stroke awareness day, facebook, myspace or just tell one person that would help us out a lot.

Thanks for sticking with me on my first 100 posts here is to another 100. I will post something special about today soon. I just can't upload right now Patrick is setting up our new desk and my camera hook up is some where in the mix. I will post it later tonight so check back soon!

Erin

Happy Mama's Day

2009-04-29T09:11:00.004-05:00

So this is what Sean and I made for his Mama's (grandmas), I am going to make one with him for myself too. Once it stops raining again. We are going to fill it with flowers to, but closer to Mothers Day.

I am shocked he actually let me put paint on his hands, I brushed the paint on, because I knew he would not put his hand in the paint:)

My little Picasso painting away with all different types of brushes.

As you see below he put his painted hand on our cement driveway and it is still there even though it has rained for 5 days straight!

SMO and AFO

2009-04-27T11:45:00.006-05:00

So Sean got measured and we ordered two items from our clinic from DAFO Cascade.

**** Update**** the SMO is for his left foot (unaffected) and the AFO is for the right foot the affected one)

We ordered the JumpStart Leap Frog which helps

moderate pronation or supination and associated gait instability.
open ankle trimline of this supramalleolar orthosis (SMO) allows free dorsiflexion (DF)-plantarflexion (PF) movement.

We also ordered the JumpStart Kangaroo which helps

moderate pronation, supination, toe walking and knee hyperextension.
proximal posterior upright on this ankle-foot orthosis (AFO) blocks PF.
anterior opening allows free DF. Posterior upright is meant to encourage lower leg to move away from it, into DF.

We also added more to his theratogs before he wore the top piece and the bottom piece we now have to tape a X on his tummy because he is not using his tummy muscles and hips and his rib cages are still way to high. I will try to get a picture of him with his tape later today.

Home from Lobby Day on the Hill in DC

2009-04-23T08:30:00.006-05:00

So DC was an amazing experience and I hope to be able to go back every year. Not only was this my first time to DC but it was my first time as a lobbyist too. So I got to meet a lot of wonderful people and some of them pretty much live in my back yard. I hope to stay in touch with a lot of new faces.

So on Tuesday is when we had to go do our "asks" up on Capital Hill.

We met with Sen. Richard Durbin (staff), Sen. Roland Burris (staff), Rep. Janice Schakowsky (staff), and Rep. Melissa Bean (staff). Even though we didn't get to meet with the Senators or the Representative's themselves it was still a great experience being able to meet with there staff who specialize in the health care field.

I got to share my story and I am going to share will all of you too.

I am here today on behalf of my three year old son Sean who suffered a stroke before he was born.

Because of lack of research and awareness it took us 2 years to get a diagnosis and we still don't know why it happened or if it could happen again,

As shocking as it may sound 1 in every 4000 babies suffer a stroke each year and many don't know why. That is why I am asking you to sign the letter to the president so that more money can be spent on research and prevention and find out why strokes are happening to children. Because everything we know about adult strokes does not hold true for children.

My son will have a life long diagnosis as a stroke survivor which means always having a pre-existing condition, and high out of pocket expenses, therapy maximums so that is why I am asking you to pass meaningful health care reform that is affordable, accessible, and adequate.

It was an emotional but rewarding trip and can not wait to do it again, so I hope the American Heart/Stroke Association invite me to come again because together we can make a difference.

Please contact your local Representatives/Senators and ask them the asks in red above because we all need to ask and make them aware.

The NIH currently only invests 1% of funding into stroke research and who knows what % of that is towards pediatric (not much I can assume) so if we can get the NIH budget double in the next 10 years like Obama is wanting just maybe that 1% will increase and more research and prevention can go towards pediatric stroke.

So will you please all send letters to your representatives and senators. And I will be following up with my and hope to build and deepen relationships with all of them. I also passed out Sean's flyer that the AHA/ASA made to each visit (a few posts down). I also wanted to share a few pictures with all of you, please let me know if anyone has any questions!

14 updates for April 14th

2009-04-14T19:21:00.004-05:00

So there are a lot of things I need to update everyone on. So lets start.

1. Sean switched from OT Aquatic Therapy to PT Aquatic Therapy

2. His PT is thinking his POLLYWOG'S are not doing the trick anymore and we may need to do a night brace, a DAFO, or a jump start brace. We go next Thursday to the clinic to decide and try things on. So for those of you who have these please help. His right foot, ankle, and hamstring are REALLY REALLY TIGHT and he is FALLING A LOT

3. I am going to DC for Lobby Day on the Hill with American Heart and Stroke Association in 5 days and I can not wait

4. I am going to an all night BINGO game with my mom, cousin, and aunt this weekend.

5. Sean is doing very well with PT. He has gone over a 100 times and has really only wet a few times. He is telling me he has to go and he is going poopy on the potty to!

6. I make top loin pork roast and cheesy potatoes tonight and SEAN actually ate it and it was ACTUALLY good, I never made it before. I seasoned it with Garlic and Parmesan.

7. I reorganized my pantry and some other kitchen cabinets today and now I can actually find things:)

8. Sean is now only drinking out of a big boy cup no more sippy cup, no lid, just a cup

9. Sean decided he no longer needs naps. I love the extra time with him, but he is not ready to give them up. He is so crabby if he doesn't nap.

10. Patrick and I celebrated our anniversary last week but still need to make a date night and go out for dinner.

11. I need a new book to ready any suggestions I just finished the Twilight set

12. I order a new desk and chair today with my transition bridge American express card from Allstate today

13. I hate behavioral interviews

14. What is a behavioral interview question you have been asked. Let me know all the ones you know. Thanks

What internal organ are you?

2009-04-06T20:41:00.002-05:00

I am the brain

It says I am the type of person who's always on, always churning.

You are alert and quick to react. You like to stay busy.

You are responsible but also demanding. You take up a lot of energy.

You are someone of a deep mystery. Theres a lot below the surface that's hard to figure out.

What are you take the quiz to find out?

http://www.blogthings.com/whatinternalorganareyouquiz/

Can Kids Have A Stroke..... Yes

2009-04-03T11:24:00.002-05:00

Here is Sean's poster for DC Lobby Day, I am so excited. AHA/ASA put it on this blog

http://heartofillinois.blogspot.com/2009/04/can-kids-have-stroke-yes.html

and on there facebook page. I am so excited!

Sensory help PLEASE

2009-04-03T09:40:00.002-05:00

So I need help. Sean is refusing to eat dinner EVERY NIGHT.

We have tried everything, giving him stuff he loves, or stuff he has eaten several times.

Eating in the kitchen, or his play kitchen, in his special chair.

NOTHING.

I mean this has been going on for quite awhile and we thought he would eventually grow out of it. No such luck.

Every night there is a battle, he refuses, than cries, hits, meltdown starts.

I just don't know what to do. I am sure it is sensory related but I am not sure what to do before dinner so he will eat.

Like in order for him to take a bath we rub the brushes on his whole body for pressure.

For him to play with shaving cream, paint, he has to do the wheel barrel walk with deep pressure on his hands.

For him to get undressed we need to hold him tight with deep pressure.

What do we do to get him to eat.

He doesn't get a snack or milk after nap.

For breakfast he eats

Banana and Pancake minis (4) with a 1/2 cup of milk, or has a 60z yogurt with water, or oatmeal, or etc something small.

At school he gets a Dixie cup of milk or water with a few pieces of a snack

Lunch he gets a peanut butter and jelly sandwich, or mickey nuggets 3, pasta, bologna, grilled cheese and fruit or applesauce with a 1/2 cup of milk or water

After nap nothing, sometimes water

Dinner he won't eat anything. We have sent him to bed with out eating several times, I feel bad but I don't know what else to do. If he doesn't eat he doesn't get milk either.

He eats breakfast at 7 AM
Snack at 9:30 AM
Lunch at 12 PM
Dinner 5:30-6 PM

Please help any ideas............................................................................................................

Things you may not know about me

2009-04-02T13:44:00.003-05:00

So I thought I would share with you 10 things you may not know about me. Normally all I do is blog about Sean and other stuff what about me.

1. I love to sing karaoke but not so good at it

2. I hate to clean my house but always do it

3. I want to go back to school

4. I sleep with ear plugs because my husband snores

5. I am afraid to have another baby

6. I would like to write a book some day

7. I love Target

8. I love taking naps

9. I have an older brother

10. I have only lived in Illinois

What do I not know about you. Please share!

Early Childhood Special Education Summer Program

2009-03-30T20:19:00.002-05:00

So today we got the information about the Early Childhood Special Education summer program that Sean qualified for. It is for four weeks over the summer and for 3 hours a day four days a week.

It is so crazy when we first found out he qualified for the services we didn't think he would need to go to the summer program but now that he has started and is going every day we have noticed a lot of great changes in his social and coping skills.

He still needs more help in those areas but with us going to the summer program he will continue to get those therapies as well as the OT and SPEECH which is great.

We will continue to get the OT and OT aquatic therapy. Well actually we are switching to PT aquatic therapy so we can get PT in there is over a year and half wait to get an after school, evening, weekend PT session.

So things are going well and we will be sending Sean to the summer program.

Sean is 3 and Spring Pictures

2009-03-27T14:12:00.014-05:00

Here are just a few of the pictures mostly my favorites out of the 80 pictures:)

More Big Boy Bike Pics

2009-03-26T20:44:00.003-05:00

Here are some pictures today of Sean riding his big boy bike!

Big Boy Bike

2009-03-24T21:07:00.004-05:00

So life has been so hectic lately that I have not much time to blog. I feel like life is busier now that I am not working not sure how that works.

But just wanted to check in and give an update on how life is going around here.

Sean continues to amaze us daily my dad got Sean a bike last summer for a garage sale and than for his birthday he got training wheels. My mom and dad watched him a few days last week when I had a few meetings, and job fairs.

I came home and he was outside riding his bike his BIG BOY BIKE with training wheels all by himself. I had tears in my eyes I know the training wheels helps with the stability but he can get on and off the bike himself and he can steer and ride in round and round.

We drew a fake road on our driving with chalk and it had stops signs, and go signs and he was driving on the road it was too cute. My camera only let me take one picture and than it died and it has rained every day since or has been to cold to be outside to get more pictures but here is the one I did get.

As for the potty training front we have gone about 25 times in the last 7 days but it isn't something I am pushing because he is tending to hold it now longer and than go and explode during nap time or bedtime so maybe he just isn't ready yet so we will see how the next week goes and take it from there.

As for the job front still looking, still applying, not to much out there but I know there is something it is just finding it or it finding me, please continue to pray thanks so much.

As for the seizures there has not been anymore activity that I have seen and I feel I would see it more now that he is home with me for a half a day each day.

As for school he is doing great he loves getting on and off the bus, he is still hitting, pushing, crying a lot at school but we are working on it and it has gotten much better.

Sean has decided to not eat anymore. I know he has so much going on that he would rather be doing but for example today he only ate

breakfast 1/2 banana, and a 4oz yogurt, water

lunch 1/2 peanut butter jelly sandwich, 1/2 cup milk

dinner 3 bites of chicken squares, 1/2 cup milk

That is so little, but he is a big boy so I am not to worried but it is unlike him normally he eats a lot. But the last few weeks I notice he has eaten a lot less.

As for being home with each other we both love it. He is on spring break this week so it is a crazy week. Today we went to the library and played on the computer, played in the Thomas hut, and checked out a bunch of books. Tomorrow we are playing with Amanda and Leah at Kohl's Children's Museum which should be a lot of fun. Thursday we have therapy and on Friday we are going to attempt to get his 3 year old/spring/Easter so wish us luck I may need it.

Here is the ever so cute picture of my big boy on his BIG BOY BIKE.

Potty Training Help

2009-03-12T14:06:00.003-05:00

So I need everyones opinion on the so much talked about topic of POTTY TRAINING.

Okay so I think Sean is really ready.

He tells us he needs a diaper change with both pee and poopy.

He will go lay down and asked to be changed.

He holds it for a couple of hours at a time.

He wakes up most mornings dry.

We put him on the potty every morning that he is dry and he goes most of the time.

He will tell us sometimes that he has to go potty and we put him on there and he goes.

So all those cues and things makes me feel he is ready............................. but

He holds it in sometimes and won't go on the potty and say his tummy hurts (from holding it) so we know he has to go.

Should we do the whole Pull Up thing or straight to Big Boy Undies?

He sometimes fights us about going on the potty. A few months ago he would go all of the time and than we tried big boy pants and he went them and than refused to go on the potty and wanted diapers....................

So I don't want to push him if he is NOT ready but there are so many more signs showing he IS ready?

What is your opinion?

no naps, painful recovery, mud, but loving it

2009-03-05T15:59:00.008-06:00

So Sean has been doing pretty well this week and adjusting with me being home with him after school the only struggle we are having is that I am in TONS of pain from the surgery and Sean has decided he doesn't want or need a nap.... anymore.

The only day he has napped this week was the day I had surgery and my dad watched him all day. Today was a beautiful day out and still is so we played outside for a little while hoping it would make Sean tired, but no such luck. I will be going to bed early tonight.

Well mud is for the dog he is covered in mud when he comes in an it is very hard for me to bend over to clean his paws off so that is irritating me a lot.

But here are some pictures from today! I have truly enjoyed every extra moment I get to spend with Sean but mommy needs a nap and to rest so I can stop bleeding!

Tonight we have open house at Sean's school to we have to go to so it is going to be a long evening with no naps:)

Lots of updates and prayers please

2009-03-01T13:14:00.005-06:00

So I have a lot to update on, sorry I have not blogged in awhile.

1. I got laid off this past week. I can not believe it, my entire team got laid off. So I am now looking for a new job please pray I can find one and soon. The way it was handled was not nice, or professional (but more on that later)

2. Please pray Patrick does not lose his job too. We both worked for the same company and he was told last week he was "safe for the week".

3. I am having surgery this Tuesday, a couple of weeks ago I was in the ER and was told I had a cyst on my ovary and a kidney stone. Well the kidney stone is gone but my cyst has gotten double it size. They are suppose to get smaller (I just ended my cycle)

Now it is to big for it go away on its own, the doc is hoping to do this laparoscopy but may have to open my c-section scar because of scar tissue. Please pray he can do it the non invasive way.

4. I got invited to go to DC for Lobby Day with the American Heart/Stroke Association so Obama HERE I COME! I can not wait!

5. I am now a steering member of the SSEEO for pediatric stroke through my local hospital and AHA/ASA so I am excited about that too.

Please keep us in your prayers that my surgery goes well, Sean adjusts to his mommy being home for a little while (which I am looking forward to as well), that Patrick is safe in his job and I can find something soon. So if you know anyone hiring please tell me!

Thanks and more to come after my surgery!

In utero stroke and how far we have come

2009-02-19T07:28:00.007-06:00

Do you remember, I can not believe we are almost at our 1 year anniversary of finding out Sean suffered an in-utero stroke, has closed lip schizencephaly aka a whole in his brain, the seizures epilepsy, the right side hemiparesis cerebral palsy, the sensory issues and much much more, and some stuff we still do not know.

Here is my original post March 1st, 2008 talking about our story, coming here to vent, cry, show frustration, and break down. How could my baby my unborn baby have a STROKE? Yes you read that right I wrote that then and I still right that now. So many people, doctors, and the society still do not know that no matter the age how young, how old STROKE can affect you. While I am still an emotional mess, Sean, Patrick, and I have come a long way from where we were.

Sean started with going to therapy through Early Intervention we went to physical therapy, occupational therapy, aquatic occupational therapy, speech therapy, and developmental therapy.

Now that he just turned 3 he started the Early Childhood Special Education program in our school district and is getting therapy privately through our insurance too. He gets occupational therapy, speech therapy, and social skills, behavior, coping and sensory help all at school. He gets occupational therapy and aquatic occupational therapy through our insurance on top of what he gets from school. So he still keeps us VERY busy. But I love Sean, we love Sean and will do what ever we need to to make his life better, him better, and him to be a happy boy.

We are very blessed to have Sean and I know GOD only gives people what they can handle and from the beginning we new how strong and what a fighter Sean truly was.

The neurologist thinks Sean's stroke happened in my first trimester because of his brain not developing correctly during brain development which is why he has a hole in his brain. He is also suffering from seizures. Complex partial seizures and if you saw some of my recent posts he is starting to have them again:( Although we are adjusting his Trileptal and hopefully that is all Sean needs for them to stop. I can not put him through another EEG it was hard on all of us, but we will if we have to.

Sean seizures are happening in the temporal lobe, and frontal lobe, and his seizure happened in the parietal lobe and the aka "hole" in his brain is affecting all three.

Sean amazes us daily, weekly, all of the time. The things he thinks of, the things he says, the things he does. He can count to 18 now, knows his entire alphabet by recognition, his shapes, colors and so much more. I know there are a lot of difficulties he has and goes through but I truly feel there is nothing he can not do, and I will never let anyone tell me he will NEVER do something because that is not true. Some of the things he has already done are amazing and I know he will continue to do more and more things that will amazes us and hopefully some of you too. I know that things may be harder for him than most but we have learned to go at his pace and love every moment of it.

I know we are not quite at the actual anniversary yet we are close enough and I have been thinking about a lot of this and a lot of things lately and wanted to get it out here!

Sean will have a life long diagnosis but he is a survivor, and my hero and I am glad that I have become friends and met a lot of you. You all have made this easier on me and my family.

We had some answers and just needed to learn more about what those answers meant which lead to more and new questions which some are still not answered and some may never be.

Cheers to a new year, with lots of new joys, new tears, new ideas, new friends, new meetings, new awareness, and new me. I am going to try and be less of a worrier and more of an optimist and learn to live each day to the fullest and embrace everything and not worry what could go wrong but live with what we have and show everyone in my life how much they mean to me.

Thanks and much love

Erin

Kidz a Connection for Inspiration

2009-02-18T15:37:00.002-06:00

I came across the most amazing and wonderful website for parents of children with special needs. It is so inspirational and wonderful you all need to go check it out and add it to the blogs you keep up with and read.

Not only is it a wonderful heart warming blog, you can actually win stuff for yourself or your little one!

So please go read and or share your story!

She is trying to raise awareness about special needs and special kids. Thanks!

Seizures Seizures go away

2009-02-17T16:44:00.005-06:00

So we had Sean's follow up visit with the pediatric neurologist yesterday and we were waiting and waiting for the doctor to come in. He was behind and we were playing. Once the doctor came in he was talking to me and interacting with Sean.

Asking me question after question and Sean was laughing, smiling, playing and all of a sudden he is completely quiet no noise no sounds and the neurologist was saying Sean, Sean, SEAN, and I was too. He was out of it, his mouth moving like he was chewing something, and he was trying to pick like lint or something off his clothes even though nothing was there.

He had a seizure in front of me and the neurologist, I am beyond scared because after it happened he had a emotional breakdown, he was hysterical, tired, and just not himself. I am not concerned all of those meltdowns he has had maybe he had a seizure before them?

I mentioned to the neurologist that I thought last week he may have had one but I just thought no we haven't had any in so long and he just started school, the theratogs, and other changes.

The doctor is upping his meds a little bit and if he has another one we will decide if we need to do another EEG. I am hoping this will help and we won't have to torture him with another EEG.

Please say a prayer that he only had those two seizures because he was not getting enough meds and not that the whole in his brain is the cause.

Katherine Klosets Mini Chalk Mat Giveaway

2009-02-14T09:58:00.004-06:00

Do you have a child who has everything yet nothing seems to entertain them in a restaurant while you are trying to eat. Or when you need a few extra minutes to do something. You have come to the right place.

Check out Katherine's Kloset to check them out but also check out The Shopping Mama http://theshoppingmama.blogspot.com/ who is holding a contest and giving away a free mini chalk mat.

Katherine's Kloset has a variety of great things some of my favorites and things you should check out are. The Chalk Mat and Crayon Roll Ups the polka dot is one of my favs. You can buy them together or buy them separately but they are both a MUST have.

Another favorite of mine is the matching bib and burp clothes how could a mama not those to match. We all no how many bibs, burp clothes we go through give these ones a try and they are reversible too.

The next is the most adorable tutu I have ever seen it is the Little Princess Tutu which every little girl needs (can't wait to have a girl someday myself) Not sure Sean would look to good in this.

There are so many great things that Katherine's Kloset offers you must go check her out yourselves. But please also check out the Shopping Mama Blog to enter to win the Chalk Mat yourself too. I also have a link to Katherine's Kloset Blog on the blogs I check out stop by there too.

We are in Chicago Special Parent Spring Magazine

2009-02-13T14:59:00.003-06:00

I am so excited. I found out Sean's picture will be in the Chicago Special Parent Spring Magazine, a copy is being mailed to me today and the public gets it in about 7-10 days. I am beyond excited.

A couple of things I mentioned about being a special need parent made it in too. I AM SO EXCITED if you can not tell:)

I will post more when I actually get the magazine but here is what is out there now:)

How we do it- Share your best tips or advice for raising a child with special needs.

"MY BEST tips and/or advice is to raise your child with love, compassion and patience. Having a child with special needs is just a label to me. To me, my child is the strongest little boy I know and he makes me stronger each day.
"I know he will accomplish great things and do everything and anything other little boys do. All you can do is let them try to do things and most of the time I am amazed on how quickly and easily he figures out how to do them."

Erin XXX

This is the picture they are using:) or one very close to this. I sent it in a long time ago and they only print twice a year so I am super super super excited!

1st Day of school, 1st day on the school bus

2009-02-11T15:19:00.004-06:00

So life has flown by and it is crazy my little baby boy is truly a big boy now. Not only is he 3, he also started the Early Childhood Special Education Preschool this week.

Our first day was on Monday I brought him there and stayed with him the whole time. He played with purple play dough and rolling pins, and heart cookie cutters for Valentines day, played on the computer, decorated his Valentines day party bag while using glue sticks and stickers.

He got to enjoy reading time with the librarian, music time, snack time, and gym. He got to go to circle time, wasn't to sure of it at first but then they gave him a sensory cube chair and put his felt star on it. He sat and listened and did not fidget to much. Sean's symbol in the class is the yellow star. So his name is on everything with the yellow star so he knows where to hang his coat, put his bag, where is name is, and his spot at circle time is.

He also got to go to gym when I was there where they all go to ride trikes, bikes, big wheels, cars, and wagons. He loved it. He rode a trike a green one:) The first day Sean barely spoke at all just pointed to things.

Every time I left the room he cried which was to be expected. We came home and tried to take a nap but he wouldn't. We then had our 3 year old check up at the doc. He is 37 inches and 37 lbs. He grew 2 inches since 6 months ago but weighs the same. He did well

On Tuesday it was our first day going to our neighbors who is helping us put Sean on the bus in the morning. We played and than I helped put him on the bus. We climbed on and he was excited they put his safety vest on and buckled him in. Sean looks at me as says mommy you sit by me and come too. I melted, holding back the tears I said I can't because only boys and girls get to ride the bus. He began to cry and they had me get off the bus. He cried almost the whole way to school. I cried too.

Yesterday at school he did great the teacher said but today went much smoother all around. This morning at our neighbors he asked for me a couple of times but didn't cry when she said mommy had to go to work. He went and played with her kids which helped. He than got on the bus and he said wheres mommy and cried a little bit but didn't cry the whole ride today.

I picked him up from school and they said he is doing great he really warmed up and was talking non stop:)

Tomorrow is his Valentines day party and they suggested a parent come if they can to the party Patrick is going to go since I have to work. So overall it has been a great transition.

I will say he is so tired from school at daycare he runs when it is nap time to go to sleep and he can barely stay awake after 7 in the evening. He told me he loves school and his new friends it is so sweet.

Here are some pictures enjoy:)

First day before we left

Walking to the bus

Sitting on the bus

His Bus

HAPPY 3RD BIRTHDAY SEAN update with pics

2009-02-07T08:13:00.008-06:00

I can not believe my baby is now a big boy and 3 years OLD. Time sure does fly by. Happy 3rd Birthday to the most amazing little boy in the world who is a hero, fighter and true survivor. Sean you have had to go through way to much in your life so far from being a preemie, suffering a stroke, having a whole in your brain, to the seizures, to the cp, all of the therapy, and everything else in between.

We are so blessed to have you and love you so much. I was trying to take a picture of the theratogs on Sean. We got the pants put on yesterday, but Ms Sarah put them on today I put them on and I guess not 100% right because he wet his diaper and his theratogs:) Daddy is taking him to see Mrs. Jenny today and she is going to show him again. While my mom takes me to the doc about my cyst today. The joy, I want this rock out of me.:)

Here is a blast from the past!

Just born

1st Birthday!

2nd Birthday!

3rd Birthday (more to come too)!

Most Pain Ever

2009-02-05T20:39:00.002-06:00

So I am in so MUCH pain, I went to the ER today because I had back labor type pains and it hurt to urinate.

Sure enough I have a kidney stone. Not only do I have a kidney stone on the right side I also have an ovarian cyst on my right side too.

No wonder why I am in SO MUCH pain.

Thank goodness for pain meds

Please please pray that I pass this stone before Sean's party. It is on Sunday. I was told that it is as much pain as giving labor.

Emotional Month that just begun

2009-02-02T08:12:00.003-06:00

So February is an emotional month for me for many reasons.

The first in being Sean was born 7 weeks early almost 3 years ago.

The second is a year ago this month we found out Sean suffered an INUTERO Stroke

The third is my little man is going to be 3, where did the time go

The fourth is his Early Intervention therapy will be ending. This week two more of his therapies will stop.

The fifth is next Monday Sean starts his first preschool, my little guy will be taking a bus to a big boy school to start the Early Childhood Special Education program

Oh at to those waiting with me we are still waiting to hear back from AHA/ASA about Lobby Day, so please keep your fingers crossed with me.

Dear Obama

2009-01-30T09:00:00.002-06:00

Dear Obama,

I am suppose to hear back today if I will be able to come to lobby day and help make a difference about Pediatric Stroke and raise awareness about Pediatric stroke. Please keep your fingers crossed.

I know if I can not Sarah will go and make a difference for all of us and our little ones. But I would really enjoy seeing you, DC, the white house, and doing my part and making a difference and help other families from having to go through what a lot of us have been or are going through.

More to come!

Theratogs

2009-01-22T14:49:00.004-06:00

For those of you interested in learning more. Here is a website about the lovely theratogs. We should get them sometime next week I hope.

http://www.theratogs.com/

Here is more info on what Sean will be wearing

http://www.theratogs.com/AtaxiTog.aspx

And a picture:) Although I don't see him smiling this much while wearing it but we will see. He will have to wear it 24 hours a day!

A Historic Day January 20th, 2009

2009-01-20T14:50:00.003-06:00

What an emotional and inspiring speech from our President Barack Obama. I got to watch it on CNBC today at work.

We also got the news that our THERATOGS are finally on there way to us. Can you believe it we only ordered them back in October, October 8th, 2008.

Blogger Award

2009-01-15T08:10:00.003-06:00

The Fabulous Blog award
My first ever Blog Award, thank you so much Jessica for thinking of me. WOW.

The deal is that I have to list 5 addictions that I have...

1 - Playing Candyland Castle Game with Sean (it is his new addicition too) and it is on clearance at Target for $2.49
2 - Scrapblog (my new fav. Site)
3 - Blogging
4 - Diet Coke
5 - Shopping

Now, I have to nominate 5 blogs that I think are FABULOUS:
It is hard to only choose 5

1* http://babystrokesteps.blogspot.com/
2* http://princessleahsjourney.blogspot.com/
3* http://ourhemiboy.blogspot.com/
4* http://ourbabiesfirsts.blogspot.com/2009_01_01_archive.html
5* http://thewalkerfour.blogspot.com/

Preschool and Early Childhood Updates

2009-01-15T07:10:00.002-06:00

I know I said I would post yesterday but I didn't get home until late last night and I was exhausted so I am sorry for those who have been waiting for my updates.

Update #1

I got a call 2 mins before I had to leave to go to Sean's IEP meeting at the school stating we got into the 3 year old preschool that we have been on the wait list for before he was even born yeah. We start March 9th. I will get a packet today or tomorrow and go in next week or the following I think to meet his teachers, the director, and go over all of the paperwork. We are so excited!

Update #2

His IEP went very well, I went in there thinking Sean may not qualify. Well sit down and scream he QUALIFIED:) We are beyond happy and excited. It is really going to be hard for us to pull this off but we will see how it goes and call in sick some days if we have to.

It is a 5 day program school is from 9:05- 11:35. He is going to start February 9th. Which works out good because his 3 year old bday party is the day before and I was planning on taking that day off.

He qualifies under: Other Health Impairment- under seizures, mild cp, stroke

He is going to be getting OT, SPT, and Social Behavior help and Coping help.

Now as to how we are going to make this work I am not sure.

There are a lot of Fridays that they don't have school, I am thinking of telling them he may just not come on Fridays. But when I asked what happens if we can not come every day they told us to just call in those days. Anyone else know how this works?

I didn't ask if he can only go certain days because there was so much going on it was overwhelming first off and there were 10 other people in there besides Patrick, my SIL and me. We met his main teacher and she seems really really nice.

1 day to results of evaluation at school

2009-01-13T09:08:00.002-06:00

So tomorrow is the BIG day we get the results of Sean's evaluation from the school and we will find out if he qualifies for early childhood services or not.

My gut feeling is that he will not qualify. In many ways this is something most parents want to hear, hear that there child is doing what the should for there age or are doing more than there age can...... I would be happy to hear he is doing GREAT but I know the reasons why he IS doing so well.

We go to therapy 4-5 times a week. That is a lot of therapy that is 5 hours of therapy a week 20-25 hours a month that is A LOT. When that is reduced to 2 hours or 8-10 hours a week will he still keep up? That is my biggest fear. Everything we have done since 6 months old till now will he regress or become behind?

In Sean's tiger tots class (it is a class of karate/tumbling) you can tell he does things differently or has a harder time doing certain things. Therapy is helping with this but how will it help if there is no therapy he can get?

As you have read in my previous post we will not be getting PT or SPT once he is 3 which is oh by the way 27 days away. Only a few visits away. The reason we can not get them through where we go now is because of the wait lists. Crazy Crazy Crazy

We are also still waiting to hear about the preschool situation and they told me I should know more this week sometime.

I will update tomorrow after the meeting when I can. My SIL is coming with Patrick and I she used to be a special ed teacher so she knows what a lot of the terms mean so that will help.

Anyone know how to make a blog header?

2009-01-08T20:02:00.003-06:00

If so do you want to make one for me or help me?

I need to spice up my blog:)

Not to much to report yet

2009-01-08T08:51:00.002-06:00

We don't know much about the evaluation because Patrick and I were in a room with the school psychologist to answer questions while he got evaluated. Everyone mentioned how much of a ham he is and how well he looks and did.

When we got home the school called and she said that they didn't see anything that Patrick and I mentioned during the evaluation he was very cooperative. We mentioned that he is different with adults (which only adults were there to evaluate and all of them wanted his attention compared to a group of kids where he needs to fight for attention. The school is going to call the DT therapist and talk to her about everything and we go back next Wednesday to go over the results.

So we will see what they have to say, but I am even more concerned now he may not qualify based on what they saw for the hour they were with him.

He doesn't know how to play well with kids, he pushes, cries a lot. He loves to play with adults because adults put him more at ease he knows what to expect.

He has space issues having kids in his space, and not knowing space boundaries of others when he plays.

He has sensory meltdowns, and has really come along way with all of his therapies the 5 we go to a week...... how could we go down to none?????

So much to say and not a lot of time

2009-01-06T12:44:00.005-06:00

So much to say and not a lot of time. So I can not believe the day is almost here the day Sean gets evaluated by the school system. I am so nervous (because I know he needs the help, I just hope they see it too)

Our evaluation is tomorrow morning at 9. Not sure if I am going to come in afterwards or not depends on how long it goes.

This week we found out that once Sean turns 3 his therapists can no longer come to daycare for the visit so not only will he be getting less therapies because of insurance some of the therapies we will be put on a waiting list. Yes a waiting list.

We will be put on a waiting list for PT, and SPT since we would need either after work or weekend hours. The list ranges from 9 months to 1.5 years~, that is insane and something I didn’t even realize would happen.

Next we found out that we are #1 on the preschool wait list we have been on forever but still may not get in until September! We will no more details by the end of the week so I will post more about this later.

I am in the mist of planning Sean’s 3rd Birthday I can not believe he is going to be 3 where did my baby boy go? He is now a little man, going potty on the potty from time to time. Taking his clothes on and off……..

Lots of emotion going on right now………………………………………………………

Our year in review

2008-12-31T16:14:00.007-06:00

So I can not believe we are almost in the year of 2009. Today is the last day of 2008 and it has flown by so fast. We have had an emotional year it was quite a roller coaster. We found out about a lot of medical stuff about Sean. We found out that he suffered a stroke in utero, the epilepsy and complex partial seizures, the closed lip schiz. (whole in the brain), the right sided hemi cerebral palsy.

But we also have a lot to be grateful and thankful for. Even though Sean has been through so much and experienced to much any child his age or lifetime should have to experience....He is here and doing absolutely amazing. He amazes us daily and makes our life complete.

January

February

March

April

May

June

July

August

September

October

November

December

Happy New Year to everyone and God bless

40 days and counting!

2008-12-30T07:42:00.003-06:00

So my niece was born this past weekend so I am a proud auntie again to miss Taylor Reese. She is beautiful and I love the name too.

So tomorrow is New Years Eve can you believe it is almost January of 2009. I can not. That means Sean is almost 3:(. My baby is no longer a baby but a big boy:)

Sean's 3rd birthday is only 40 days away where did the time go? I have been an emotional wreck about Sean turning 3 and not having another baby already. I know I know it would help if we actual try harder and time it, instead of just "trying"

But I am so scared of trying and everything we have been through with Sean. The 4 weeks of bed rest, him being 7 weeks early, the nicu, and nicu stay. Not being able to hold my baby for 48 hours after he was born, to not letting me have him in my room at the hospital, to have to leave the hospital with out him. For the struggles, and medical tests, procedures, dx's (the stroke, the epilepsy, the mild rh cp, the closed lip schiz., and all of the therapy. I don't know how I could handle this times two if we had too. I know we would some how some way because God only gives us what we can handle.

But what do I do. How to I overcome how scared I am? The hardest thing in my life was to leave Sean in the hospital and have to leave the maternity ward in a wheel chair with an empty car seat.

Uh the emotions.................................

On another note we still have not gotten our theratogs that were ordered um in OCTOBER! Hello where are you? Supposedly they will be here soon. We will see I GUESS!

Hapy Holidays

2008-12-25T21:33:00.002-06:00

So Sean was feeling better by last night and this morning was a lot of fun. I got a lot of great action and cute shots. Here is one of my favorites.

Merry Christmas and God Bless everyone!

Merry Barf-Mas

2008-12-24T12:03:00.003-06:00

So I just wanted to wish everyone a very Merry Christmas and Happy Hanukkah and or Happy Holidays.

You got it we are celebrating a very Merrry Barf-Mas. Sean was up all night puking. He puked all over his bed and himself, it was even in his ears:( around midnight, clean him off, took his pj's and linens. Gave him a nice long warm bath. Got him dressed again, went into our extra bedroom and read books. As I was walking out of the room he puked again all over this bed.

Got him undressed, and cleaned again, changed clothes again. Went in the bathroom and sat there for awhile. We then went downstairs on the couch to watch some tv (Thomas the train) and cuddled in a blanket. He sure enough about to barf again. I got up and ran into the kitchen to the sink but didn't get there in time and puke was all over me and him.

Patrick came and got him undressed and cleaned up again new pj's again. I went to go change and clean up. Poor little guy. We than went back to the couch to watch more Thomas and a few mins later he had to puke but we got him into the kitchen in time and near the sink. This time he didn't get it on his pj's or us:) He than dry heaved a few times. My poor little man.

He finally stopped puking around 2:30 am I was up till 3 AM and than went to bed and Patrick woke me up at 9 this morning. I am so tired, Sean is tired, and Patrick is tired. Sean slept on the couch from about 4 am to 9 so at least he got some sleep.

This was not what I wanted for Christmas, but I know it could be worse and I am thankful and grateful for everything I have. At least it will be memorable:)

Although we won't be able to go the family parties tonight or tomorrow we can have our own family party hear with the three of us.

So HAPPY HOLIDAYS and Love to you all~

The Eve of Christmas Eve

2008-12-23T14:07:00.003-06:00

So Sean and I had a wonderful day today playing together inside. It started off by waking up to eat Life. Yummy:) Than Miss Meghan came to our house today (she is Sean's Developmental Therapist) she is so nice and fun. Sean loves playing with her.

While Miss Meghan was over we were about to start a play date too. Sean's buddy Tyler came over. They played kitchen, little people, cars, Thomas, danced, ran, ate mini English muffin pizzas, apple slices and watched a video. It was a great play date. Sean went on the potty twice while Tyler was over he is becoming such a big boy.

We made peanut butter cookies yesterday and oatmeal. I am going to make choc. chip tonight. Here are a few pictures of Sean helping me make and eat:)

Twice upon a Christmas

2008-12-22T09:51:00.003-06:00

So Sean and I are home today by ourselves since Patrick had to work. I asked Sean what he wants to do today. He gave me quiet a list.

1. Go get a bagel, (he loves bagels) we did go in our pajamas even though it is -4 degrees outside.

2. Watch movie

3. Play with baby Jesus and Little People

4. Make cookies

5. Eat cookies

6. Lightening McQueen song and dance (Gone by Sheryl Crow)

So hear we are eating our bagels, well I finished my half and he is still eating his half in our pajamas watching Twice Upon a Christmas with Mickey Mouse.

If you have not seen it I HIGHLY recommend it, it is so cute, it is about a bunch of different stories with all of the different characters. It is SUPER CUTE and well worth the PPV rental of $2.95.

Have a great day I have lots of other stuff to do with Sean on our list today:)

Day 6 and Day 5

2008-12-21T19:16:00.004-06:00

So I was to busy to post yesterday so I apologize. We are finishing all of our wrapping, and a few last gifts I must admit. I feel as time has flown by this year with out a lot of time to shop, wrap, and decorate.

One thing I have made extra time for is remembering and reflecting back on this year just seeing how much we have changed, how much Sean has changed.

Not only changed but how FAR he really has come. He can jump, run, skip, dance, walk up and down the stairs, go potty on the potty. He will take a bath with some bubbles, play in sand, walk on grass, go under water in the pool, can do a somersault with help of course, pump his legs on a swing, put together a puzzle, say his ABC's, colors, count to 20. He can have a conversation back and fourth with us, he loves to read and be read to, says thank you, I love you, your welcome, gives kisses, blows kisses. Loves to ride his tricycle in which he can actually reach the pedals, will climb to the top of the slide and go down all by himself. Yeah I know this is short and to the point but my little baby is now a BIG BOY. He tells us daily that he is a big boy and tonight he just showed us again by going potty on the big boy potty.

Enjoy your family as much I as I enjoy mine.

7 days Let it Snow Let it Snow Let it Snow

2008-12-19T12:18:00.002-06:00

So since we are literally snowed in, it has been very hectic. I am still not feeling 100% but I have to work today, at least I get to work from home.

So we are started off the day on a good note, Sean woke up, we gave him a bath, he really needed one last night but with me being so sick and Patrick tired we waited till this morning.

Sean took his bath got out got dressed ate breakfast and than the temper tantrums started. He wanted me to play with him and I tried to explain I needed to work I have to make 90 calls today, yes 90 which is not easy to do with a 2 1/2 year old screaming in the back ground and a dog barking.

It has calmed down I have played a little, worked a little, and feel sick still. ugh..... I need a nap but still have to many calls to do and 4:00 can not come quick enough.

We are getting more snow and an ice storm tonight oh joy the fun in winter in the Midwest!

At least after 4 today I am off until 12-29 yeah I can not wait!

8 days and counting

2008-12-18T14:56:00.006-06:00

Well this is going to be a rough one today since I was sick throwing up all night I think I have the stomach flu boo hoo:( Go away go away, and please pray Sean won't get this that will suck since Christmas is almost here.

On a better note when we got home last night there was a box for Sean. He goes mommy there is a box for Sean it came from the mailbox.

So we opened it and it was the Litte People Nativity set. My mil bought it for him. He asked her the other day mama you buy me baby jesus:) It was so cute he loves it, he set it up next to his tree in his room, had to keep the tree lights on last night so he could see baby jesus:)

9 days of Christmas

2008-12-17T08:06:00.004-06:00

I meant to start this at 12 days but time has just flown by. I am going to write a little something each day until Christmas.

I was searching for a poem today that talked about my life, things I am grateful for and how blessed I really am. God only gives us what we can handle.

Heaven's Very Special Child (Author Edna Massionilla, December 1981)

A meeting was held quite far from earth!
It's time again for another birth
Said the Angels to the Lord above,
'This special child will need much love.

His progress may seem very slow,
Accomplishments he may not show,
And he'll require some extra care,
From the folks he meets way down there.

He may not run or laugh or play,
His thoughts may seem quite far away,
In many ways he won't adapt,
And he'll be known as handicapped.

So let's be careful where he's sent,
We want his life to be content.
Please, Lord, find the parents who
Will do a special job for You.

They will not realize right away,
The leading role they're asked to play,
But with this child sent from above,
Comes stronger faith and richer love.

And soon they'll know the privilege given,
In caring for this gift from Heaven,
Their precious charge, so meek and mild,
Is Heaven's very Special Child.'

This poem brought tears to my eyes. I know Sean can walk and run, but he is a Special Child to me, to Patrick, and to everyone else who loves him. He is a true fighter, survivor and hero.

Deals of the day

2008-12-16T08:56:00.002-06:00

So I figured if and what deals I find I should post them here.

Today Amazon is offering a great deal on Leap Frog Fridge Phonics Magnetic Alphabet Set $8.99

Restaurants.com- they sell $25 gift cards for $10 and use discount code SANTA for 80% off

Barnes and Noble safe 25% on one item coupon code P7P7Y9N

more to come as I find them

Good and not so bad

2008-12-08T07:37:00.003-06:00

So sorry I didn't update earlier, our weekend was crazy. After going to our appointment at 8 AM on Saturday after a 10 min car ride took almost an hour because of all of the snow and the lack of plowing so early. It took us an hour to get there, luckily I was smart and left early so I had enough time.

Before we left we had to put eye drops in Sean's eyes to dilate them, so I had to remember to bring the stroller because he wouldn't be able to walk very well and with all of the snow on the ground I didn't want him to fall.

So we arrived around 7:55 and I open Sean's door and he goes "mommy I don't walk in that, it is dirty". He has OCD and Sensory Issues and thinks snow is dirty and doesn't want to touch it and if it gets on him he screams and screams until it comes off or melts. (we are working on that, total different topic and post- Lets just say he had a meltdown because snow got on his boots earlier in the week and snow has been a nightmare since)

So I put him in the stroller and try to plow through the snow on the ground that has not been plowed and got in safely with not to much crying.

We got upstairs and waited our turn. We finally got called around 8:30 the nurse brought us back and started to show Sean some pictures on the screen and he didn't really want anything to do with what was going on. He didn't want to sit in the chair, stand on the chair, or be any where near the chair. He wobbled out of the room (he had a hard time walking from the dilated eyes)

She said lets go in the kids play room and see if we can do a few more tests. So we went to the play room and she put these funny glasses on Sean (I think 3-D) and he had to grab at the animals that were jumping out at him. Not sure if he understood how to do that? Then we went to a big bug and he immediately grabbed at the wings (like he was suppose to) so I was happy.

The nurse than told me that the doctor is running behind and is not even in the office yet but on her way and with the snow she will probably be running behind about an hour. So we put in the movie Duck Tales (cute but Sean was not that interested)

We watched the movie and than two dirty diapers later it was finally our turn. We went back in the room with the scary chair that Sean climbed into like a big boy. The doctor put the animals back on the screen and other objects. Sean started to name them off like hand, duck, cake, phone, etc. She said that he is doing good, his eyes are still the same as they were last time so they are not worse but not better.

She told us to keep an eye on him and his eyes because he is near sided, she also said she wants to wait a few more months and see if they get better. But if not we will need to do glasses and a patch but right now she wants to see if his eyes will correct themselves. That is great news but still something I have to worry about.

The worrying will never end:)

Eye Doctor Appt and other worries

2008-12-05T09:09:00.005-06:00

So we have to take Sean to the pediatric eye doctor tomorrow morning. I am nervous because I have a feeling she is going to say we need to do the patch and glasses. I hope I am wrong because he has already had to go through and do enough already for a 2.5 year old. We have gone every six months to get his eyes checked. This past time they were a little better than the time before but still not where they need to be. Of course it is his right eye that is weaker, poor guy.

Any ideas on how I can make wearing a patch fun? I plan on incorporating pirates some how and making it fun but not sure how he will be with it. Like I said I hope we don't need them but my mommy instinct is telling me different. However I hope it is wrong. I will update after tomorrow mornings appointment.

My next worry is from what happened at 2 am in the morning/night last night this morning. Sean went to bed like normal woke up at 2 am SCREAMING HIS HEAD OFF saying "Don't take my toys away" and "I want my little people house, don't take my toys away"

I am not sure where this is coming from. He was sweating, screaming, hitting, kicking, breathing heavy. Both Patrick and I went in to his room and he told Patrick not you not you and mommy stay here with me don't leave me.

Broke daddies heart and melted mine. I sent Patrick to get a sippy cup of water to help settle down by sucking which worked but he kept crying and hyperventilating until almost 2:30, finally back asleep by 3:00 and than mommy went back to her room to try and fall back asleep.

The only thing I can think of that made this happen is that Sean fell asleep early and we had a crazy night and forgot to give him his seizure medication. I know I am the worst mommy ever for forgetting but we have so much stress in our life right now it is crazy. Stress needs its own blog:)