Happy Holidays!

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**

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

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

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

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

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

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

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~

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

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

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

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

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

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

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

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

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

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!