EEG & Blood Work & Sick

Here is a picture of our sick little bunny....................

I just got the results that there was no seizure activity during the EEG. But that it really didn't get us any where from where we were before the EEG. The pedi said that the results mean nothing since he was awake and moving the entire time. He was very mad that they did not sedate him even though he sent in a request to sedate him orally if needed. The nurse said she wasn't comfortable sedating him.

He said we are to write down every time we see him space out the date and time and if we see a lot of them we will redo the EEG. I should get a copy of the entire reading and notes from the neurologist who read them this weekend. The pedi is also going to send us to a pedi neurologist too just to see what his or her thoughts are too. He will be watched very carefully.

But right now I can not put him thru something like this again and maybe that makes me a bad mom, I am not sure but it is just to much in this short period of time. The MRI was one month ago from today. A lot has gone on.

As for the blood work...............

Most of them that have come back so far are okay but his protein tests showed something him and the pediatric hematologist did not like so we are being sent for two more tests. He said once we do the next ones we will know what to do from there. We are still waiting to hear back on other blood tests too that have not come back yet.

On top of all of this Sean is extremely sick he has had a fever of 104 or so some a little higher some a little lower since Sunday. Our Easter bunny was not feeling to great and is not eating he ate some apple sauce and a banana tonight and is barely drinking anything. The pedi said his throat and tonsils are inflamed but we came back negative for strep so we have to wait it out. The doc said if he doesn't have another two wet diapers by tomorrow AM we have to go there for a dehydration test.

Thanks for all of the thoughts and prayers on this emotional roller coaster.

The EEG is over and Fingers Crossed

Well yesterday was Sean's EEG. He was only allowed to sleep 4 hours, yes you read that right 4 hours the night before. As you can see he just wanted to go to bed...

He stayed up until midnight with daddy and I woke him up at 4 AM. It was a long night and day yesterday.

We had to get to the hospital by 7:30 to check in and our EEG was at 8:00. We checked in and went over the EEG nuero lab and they brought us back to our room and the nurse was telling us what they were going to do and started putting the wires on Sean's head and he lost it.

She took the few he had left on that he didn't pull off and said for us to try to get him to sleep.... well after 30 mins I went and talked with her and said he is not going to go to sleep so she suggested we go and watch tv or something that will relax him.

So we grabbed our bink (blanket) and pees (paci) and went to go watch some curious george. We also found a toy one of those toys you have to push the shapes up and over and around the wires this was a LIFESAVER.

We decided to take that back to our room with us and he played and played and did I say played with it the entire time she was putting the wires on him and the gauze and it did not bother him one bit. We were so proud and than she left him play with it the entire time she was doing the readings.

She said he was very sleepy and didn't move to much so she said she thought it would be a good enough reading. It better be I don't think any of us can go thru all of this again.

He was very well behaved for being very very sleep deprived and of course fell asleep in the stroller on the way to the car once we were done but only slept 2 hours yesterday until last night when he slept for over 12 hours.

He is still cranky today but so am I, we are all still sleep deprived. They said we should get the results some time by the end of next week.

Fingers crossed

Blood work, EEG, and ice cream

Well on Tuesday we went to try and get the blood work done on Sean and they poked him twice once in each arm and it didn't work because he kept moving and would not calm down or sit still. But what 2 year old does sit still and calm when there are needles coming his way. They told us to come back on Wednesday.

So we went yesterday afternoon, brought the paci, the binky (blanket), milk, and gold fish and started the process. They poke him twice and got some blood and than he moved and the needle moved from the vein. They didn't want to poke him again but I did not want to bring him back so we let him play and run around drink water from a big boy cup even though his shirt wore most of it. After a little while more we decided to try and get the last amount of blood we needed which was about 4 ml's so they decided to have him hold a warm pack in his hand and they poked his finger and got the remaining 4 ml's they needed. The funny think is he didn't react with the finger being pricked he was still his happy self and we are all glad that we won't have to go back for a while or at least we hope to not have too.

We went home and had dinner and since Sean was such a brave little boy, I decided to make him an ice-cream cone. I was very impressed on how he ate the ice cream and how he didn't mind the mess:) Which he normally does.



I then got a call from the pedi's office about the EEG and to call the number they gave me and they will tell me when it is scheduled for. It was after scheduling hours so I called today. I was going thru the process and they said that they had a cancellation and we can go tomorrow at 8 am have to be there by 7:30. I jumped on that because I just want to put more of these tests behind us...as most parents do.

They told me that Sean is only able to sleep 4 hours tonight. How am I suppose to keep him awake.......... it is going to be a long night I believe but at least we will have most of the weekend to catch up on sleep. Wish us luck and send prayers.

Thanks,

From a soon to be sleep deprived mommy

Sean said I LOVE YOU

Well we went to the pedi today and he is sending us for an EEG to check Sean for any seizure activity. He said from what we were describing and talking about he thinks we may see something. But that is the only way to know for sure. Sean was not a very happy guy at the pedi today. This picture was taking tonight when we got home as you can see still not to happy but still so cute!



He said that absence seizures are VERY common in children with in-utero strokes and it is better to know now and to create a treatment plan if needed.

We are also going to be doing a lot of blood work I just need to call and set up an appointment at the hospital. We are going to check for blood clotting disorders and lots of other things.

I just wanted to wish everyone a HAPPY ST PATTY'S day.

So next step blood tests and EKG. It is so scary to have to put our toddler thru all of these tests but it is worth it because at least we may have a chance of knowing and or being able to prevent from happening again.

Knowledge is very powerful but very scary and frigtening all at the same time. Make sure you hug and kiss your little ones very tight.

Sean said I LOVE YOU mommy and I LOVE YOU daddy tonight those are the best words any proud mommy and daddy could hear!

Last but not least Sean says kiss me because I'm Irish

One step forward two steps back

One step forward two steps back….

Well I think Sean may have had a seizure this past week. He totally freaked me out. We were in the car, I was walking around to get him out of his car seat and he was completely spaced out. I was trying everything to get his attention or to move or to look at me. Nothing….then all of a sudden he looked at me his arms were moving all over the place and he was trying to talk about it was all gargled. It was the WORST min of my life my heart was pounding, I was crying and so overwhelmed.



I called the pedi and he asked me a couple of questions and said what it sounds like it may have been a seizure. I also asked him about what other things could be happening that are not as noticeable that I should be looking for. He said the more noticeable would be rolling of the eyes, losing consciousness; convulsing but some of the more unnoticeable things would be blank starring.

Blank starring??? We all do this, I do, Patrick does, and Sean does too. Well he said that when it happens does he respond to you if you call his name or try to get him to focus on other things. He doesn’t, when he spaces out he is in space or some where because he doesn’t respond to us if we say his name, tickle him, and try to get him to play with a different toy. He also sometimes acts like he is chewing when this happens. The pedi said that these type of mild seizures are very common in children who have had in-utero strokes.



So he suggested us to get an EEG done. We go on Monday St Patty’s day to talk about the EEG, to get our referral as well as going to be talking about all of the blood work Sean is going to go thru to make sure this isn’t something he is at risk for, for recurrent strokes and to see if it is genetic or not. Here are a few pictures of us playing outside this week it was almost 60 degrees here!

I will update more on Monday.

The Worrier Queen Bee

Here comes the worrying, overanalyzing, and oh did I say worrying?

Well we started aquatic therapy last week with Mrs. Jenny and Sean LOVED it. He wasn't bothered as much with her making him use his right hand. He was smiling, laughing and most of all NO CRYING:) We are going to be going every Tuesday night now. I took pictures but I don't think Mrs. Jenny would want them posted hear:)

We also went and got Sean's 2 year old pictures taken this weekend. It was quite a day we took some and then had to stop and go play at the Rainforest Café and see all of the fish and go to the Disney store. But we eventually made it back down to the studio and got one of the cutest pictures ever. They are all cute but here are my two favorites.

We are meeting with the pedi on St. Pattys day to talk about all of the different blood tests that Sean is going to get done and I am going to talk to him about my concerns and that I want to be referred to a pedi. Neuro. to get there opinion on everything that is going on with Sean and all of the big WORDS the radiologist wrote. I just want to know the possible long term and short term effects....at least I hope they can explain all of them to me…..

I am big worrier so the more info I know is better than the unknown. Currently Sean is trying to work on jumping and of course building his muscle tone. We are also going to work on his sensory issues and try to not let him or have him freak out when there is stuff on his hands. He gets very upset when there is finger paint, frosting, syrup, icecream, chocolate, bubbles etc… on his hands or him. He also gets upset when some one bumps into him or if a ball bounces into him but laughs when he doesn't to someone else.

Currently I am reading up on this to see what I can do to help. I think he might need to get massages every night. This is probably enough for now I will update more when I know more next week. I am worried that seizures may start at anytime so I am constantly starring at him just because something may or may not happen. Are all seizures noticeable?

The Worrier Queen Bee

"Wheel of the World"

This is one of my favortie songs and it totally makes sense in my life right now. For those of you who have never heard please listen to it. It makes total sense in my life right now since we just found out that Sean suffered from an in-utero stroke. We heard back from a second radiologist and he agreed with the dx. We are now going to meet with the pedi and discuss and figure out who to go to for a pedi neurologist and pedi hematologist to figure out or try to that is why this happened and to make sure that Sean is not at risk of it happening again.

It is by Carrie Underwood and here are the lyrics

Love goes out, out like a light
Out like a flame, and you can't find it anymore
Just when you think it's lost in the rain
It comes back knocking at your door

It's the wheel of the world turning around
It's the wheel of the world turning around
And around

God put us here on this carnival ride
We close our eyes
Never knowing where it will take us next
Babies are born and at the same time, someone's taking their last breath

It's the wheel of the world
It's the wheel of the world turning around

In the blink of an eye
It can change your life
And it never even slows down

It's the wheel of the world

I don't know what it is
I'm flying high
Then I'm wondering why I'm sinking on this ship, going down
Life keeps on moving anyway

It's the wheel of the world
It's the wheel of the world turning around
It's the wheel of the world
It's the wheel of the world turning around
It's the wheel of the world turning around
And around
And around
It's the wheel of the world turning around

It can open your heart
It can break you apart
And it never even slows down

It's the wheel of the world turning around
It's the wheel of the world turning around
It's the wheel of the world turning around
It's the wheel of the world turning around
And around

There is always a first....right

Well this is my first time blogging and I hope I do it right. We just found out that Sean had an in-utero ischemic stroke, I am overwhelmed with emotions and just need to write things out but I first need to figure them out in my head.

Just a little about Sean:

Sean was born 7 weeks early and has always had muscle weakness and we noticed he was not meeting his milestones. He was an emergency c-section after 10 hours of labor and his heart rate dropping 3 times. I was also on bed rest for 3.5 weeks do to pre-term labor. He was born weighing in at 5lbs 10 oz.

We are currently receiving PT, OT, Speech, and now Aquatic Therapy. Our first session is on Tuesday. We go to each of them every week. We go Tues, Wed, Fri, Sat.

Sean didn't crawl until 14 months, his first steps at 19 months but really started walking around 20 months and now you can't stop him from running around. I am just happy we started therapy when we did it has helped him and us so much. He was also delayed in talking at 18 months he was really only saying about 10 words and now thanks to his ear tubes and speech therapy he can say to many to count:)

This is probably enough for now but will post more updates later. Thanks for reading.

Erin