Monday, April 28, 2008

The never ending "unknowns"



I know I will never know everything but I am sick of learning something to learn another unknown. I just want to find out what it is, what we can do, what we need to look for, and what does it mean.

It seems like a easy four questions or at least one would think. But in reality they are not. We got to see the pedi neurologist but have uncover more unknowns and now need to see a pedi hematologist/oncologist to check to see why his protein c and protein s levels are low.



Trying to find out what that means online is even more of a scary thing then the unknown.

We also started the seizure medication today this morning he tool 1 ml and tonight he will get another 1 ml. We have to do 1 ml 2 x day for 3 days and then 2 ml 2 x a day for 3 days and then 3 ml 2 x a day for until well unknown at the moment.


This is an emotional rideI never thought I or us would be on but it only makes me remember to never ever take for granted anything in life to live each day to my best and tell everyone what they mean to me daily.

I just need to stop and enjoy Sean and Patrick and the spring that is suppose to be here. But wait we are in Chicago and it is suppose to SNOW tonight!


I did the March of Dimes- March for Babies yesterday and I raised over $1,000 dollars this year. Sean did not walk with us this year since it was 39 degrees. We walked 3 miles and I felt really good and proud of my team. We almost raised $3,000 dollars. Every dollar counts.

Friday, April 25, 2008

Seizures, Meds, and going to a pedi hemo/onco.

Well sorry for the delay in updating about Sean's pedi neurologist appointment. It has been a crazy few days I had to go down town for work last night and I just figured out how to get online from my lap top and don't have much time till have I to be in my next meeting.

So the pedi neurologist said that Sean is having seizures he is having complex partial seizures and we need to start medication but since I am down town till Sunday we are going to start on Monday so Patrick and I will both be able to be home and be together.

The pedi neurologist said because of the history, the mri, what the mri showed, the eeg, and the activity he was able to see on the eeg, and what we are describing he says he is indeed having them and the medication should help.

The eeg I guess was not a complete waste of our time with Sean not falling asleep, was nice to not have to put him through another eeg at this point. We will have to do more to see how the medication is working and will have to have repeats and a bunch of blood work to check his blood levels from the medication but if this will help him it is something we need to do.

He also said that things could be happening with out anything noticeable to us or anyone around him as well. He said that the activity could be causing some of his acting out and behavior. Yes I know he is in his "two's" but some of it is just off to us.

We have to go back and see him again in six weeks. He answered all of our questions to the best he could.

It was also really nice to see everything on the MRI. He showed us the stroke on the MRI films and also the closed lip schiz. Basically there is an area of Sean's brain that is not together. It is in the same area of where the stroke happened and it was amazing to see it. He doesn't know if this part of his brain where it is not together what it could mean but for it to be watched. He said that he thinks the stroke happened sometime between month 1-5 gestation because of the closed lip schiz.

He said we are at a slight risk for other pregnancies but he is more worried about Sean's protein c and protein s levels because they are both low and we have to go see a pedi hemo/onco. and I need to go thru all of this testing too. So once you feel you get more answers they give you more unknowns.

I know this is short and I am sorry for the delay. But I will post more soon.

Tuesday, April 22, 2008

Going to the pedi neurologist this Thursday


Going to the pedi neurologist this Thursday....

Well I have the best news one worrying mommy could hope for. Good by August hello THURSDAY. Yes I did write Thursday and I mean this Thursday April 24. Thursday that is two days away. We are going to see the pedi. Neurologist this Thursday. I called Loyola and asked the scheduler to connect me with a nurse in Dr S. office because I had a few questions.
I asked her because I wanted to make sure I was doing everything and have everything ready for when we get to our appointment because I don't want to miss anything. I asked should I write down when I think he is having a absence seizure do I right the date, the time, or just a check mark. She said why do they think he is having seizures, I said because we just found out that he suffered an in-utero stroke. I also explained that we attempted and EEG and it didn't work.

She said you are NOT waiting until August come in on THURSDAY. That is music to my ears. I am so excited I do not need to wait to get more answers. I know he may not be able to answer all of them but at least I can hear it from someone in a language I can understand.

I have lots more questions to write down for our appointment I have 20 so far. Yep 20 but now I just got a copy of Sean's blood work and what I was told was all normal is not showing normal on the results. I know it is hard because our pedi. Had a mild heart attack last week. His protein c and s are low and another one is high. I saw because I asked them to fax them all to me for Sean's appointment so I will ask the neurologist and for now just try to stay calm and breathe.

Friday, April 18, 2008

"Do what you can, with what you have, where you are"

"Do what you can, with what you have, where you are" by Theodore Roosevelt.

Stop and look up at the clouds! This has lots of different meanings, depending on what stage or part of life you are in as a person, as a couple, or as a family. This quote really moved me because it hits home.

"Do what you can"- I can only do what I can at this very moment. I can not control what the future will show or tell us or do anything about Sean's appointment being so far away. What I can do is enjoy every moment, every laugh, smile and live in the moment. To try to not worry about next week, next month, or next year.

I just need to do what I can with what I have. What I have is an amazing son, husband, family, and friends. "With what you have" you make what you have and if you have something you don't like you can change things. I know I can not change that Sean had a stroke, or that he was born premature or that I have been told that he has a mild for of cerebral palsy. But things I can do about it is make other people aware, continue with all four of Sean's weekly therapies, stay strong, and shower him with the most love one can give.

I do what I need to with what I have but it is also important to remember my self and where I am. "Where you are" is also important because it involves you or in this case "me." It is important to love everyone and everything around you but you also need to remember to love yourself and to continue doing those things you love. Making me time is very important part for me because I am under a lot of stress with everything going on with Sean, work, and just life. Making me happy helps make everyone else in my life happy.

I made another blanket last night- it is a lot of fun for me to do. Yes I know I am making those blankets for Sean but making them while relaxing at night once he is in bed. I also plan to get a massage, and get into yoga again. It will help me in every aspect of my life to just take a moment to sit still, be calm, breathe, to relax and to remember to look up and enjoy the clouds.

So please "Do what you can, with what you have, where you are"- Theodore Roosevelt

Bye for now~

Erin

Wednesday, April 16, 2008

New hobby made with LOVE and blood work results


I thought of a new hobby today and I made my first one tonight. I of course made if for Sean and it is of course of Thomas the Tank because he is Sean's favorite.

Yep here is a picture of my finished product. I went to the store and bought 1.5 yards of blue fleece and 1.5 yards of Thomas the Tank material and here it is. It took me a few ties to figure out how it should go but I am very proud of myself and it kept my mind off of things for a little while.


I love crafts and scrap booking and I just need to make time to do these things more often. I also realized today that not ever call from the doc is a bad call. We got a call today stating that all of Sean's blood work looks great. They said the pedi neurologist may recommend other tests but we don't see him until August 7th.


Well I just wanted to show my finished blanket and now I am off to get ready for bed since I have to work in the morning. I can't wait until Sean sees it. I know it is not perfect but it is made with lots of LOVE

Sunday, April 13, 2008

117 days.....August 7th, 2008

You may ask what August 7th is.



This is a picture Sean colored for our anniversary.

Well August 7th, is 117 days away not only is it my moms birthday and Sean's 1/2 birthday. But that is when we are going to meet the pedi. neurologist at the children's hospital at Loyola. Yes I know 117 days is not long to many but it is to most. It is when I will get more answers to my entire notebook worth of questions.

I have so many I started a notebook so I will have them already when we get to go. I have never hoped for a day to come because it would mean Sean would be older but this is one day I wish could be tomorrow. I have so much stress, emotion, frustration, anger, sad, and worries about all that has happened. I just can't wait for the day to come so I can get more answers, maybe not all of them but at least I can get some.

We are on the wait list so if there are any cancellations they will call us but I am sure the wait list is long as well.

We have finally told everyone or almost everyone in the family and they are all really supportive which is very helpful. And Sean is my reminder everyday that he is going to be okay. Just seeing him smile, laugh, walk, run reminds me after all he has been thru he is doing great.

Thursday, April 10, 2008

Pedi Orthopedic... Bare Feet



Well we went to see DR for pedi orthopedic about Sean because he is in toeing when he walks. His therapist recommended us to go because of the weakness on the right side.

So we went and our appointment was at 12 and we left at 2:30 the doc was behind which was hard to keep Sean occupied and from falling asleep since he naps around 1:30. But we managed and she assessed him. She had him walk around, go up on his toes, streching him, playing his feet, legs, back, reaching, hips and much more.
She said his hips and feet look good which is great. She also said that his tendons are weak which is causing him to in toe. She said we could put him in braces where he would have to wear them all of the time but she said it would slow him down with everything else so for now we are going to wait and see. She thinks he will out grow it once his muscles get stronger.

She kept mentioning CP and I was confused after she mentioned it the third time and I said why do you keep mentioning CP and she said that the medical term of Sean's right side weakness is a form of CP. Someone mentioned this to me earlier today so I was not completely shocked but I still was a little. She said the pedi neurologist will tells us more when we see them about everything and the stroke. So now I will be googling the two together and probably driving myself more insane.

She also mentioned to have him always bare foot in the house and the grass this summer because it will put pressure and sensation in his feet and will help his sensory issues. It will interesting to see what he will do on the grass bare foot this year. Last summer he wouldn't do it, he cried and cried until you picked him up. All we can do is try and try a little bit at a time.




It truly will be baby steps with his sensory stuff because if you push him to far out of his comfort zone he won't even be willing to try it the next time.

So one more doc down for now or at least till next year:) These pictures are from last weekend. This weekend we are suppose to get SNOW........... yep SNOW in April......... that is the midwest for you.




Monday, April 7, 2008

My Little Picasso...............

My Little Picasso....................


So we had a fun filled weekend with beautiful weather. On Friday night we went on a long walk with grandma. We practiced jumping okay at least tried to jump and kicking a ball.

On Saturday we went and did the remaining of Sean’s blood tests they took 4 tests tubes of blood yep you read that right 4 test tubes. He was hysterical daddy was holding him while I talked and held him still with 2 nurses and the other nurse taking the blood. It took two pokes and we got all of the blood with the second poke.



After that was over we went to Target and let him walk around with us and let him pick out a few things. He picked out sunglasses, some new bubbles, and chalk.

We then went to see Miss Jenny for therapy at the clinic and then came home to play outside. We rode our big wheel, ran around the back yard and blew more bubbles.

Yesterday we went on a long walk just the three of us and went to the park and played on the swings, the slides, in the rocks and all over the place.



Sean played with chalk and colored a lot of our driveway and him self. We had a very fun weekend which made us all happy.

In the mist of everything we are going to be adding another doc to Sean’s list. Sean is walking pigeon toed and his PT Miss Sarah wants us to go see a pediatric orthopedic so we are waiting on the pedi to call us with the referral.


I have also noticed Sean spacing out more too so I am waiting to get a referral for a pedi neurologist too. So lots more docs to go but we are all doing okay at the moment because of the nice weather.

Wednesday, April 2, 2008

Quote of the day................................



Well I got the results from the neurologist who read Sean's EEG. He basically said in normal people language that he moved to much, did not fall asleep, and they did not get a good reading. He did say based on the very little he could read from the EEG that Sean is within normal range for his age however the big quote of the day is, "less than confident in results and activity because of the movement....repeat necessary"

Well we are going to redo the EEG I just want to wait a little while because Sean is so scared of a lot of things and places now. The pedi said it is okay to wait a little while but I have to write down every time he spaces out and doesn't respond. I always watched him before but now I feel like I am looking ten times as hard.

This is so upsetting that we kept him up till midnight and woke him up at four and it didn't give us any NEW info. Sean is finally starting to feel better and acting himself and we have two more blood tests to follow up with as well.

Sean has gone thru so much in the last month it is crazy and the three of us just need a break. (Sean says it all in this pic..back away mommy and daddy and let me play~)





We are going to attempt to do the additional blood work this weekend. I just want to make sure he is not going to get sick again. I know all of this needs to get done and it will but it is SO hard to see Sean get so upset about what is getting done it is heart breaking to hear, see, and feel. But his smile and laughter makes my heart melt as well.






Sean played outside tonight since it was about 55 degrees and he loved it. I can not wait for the spring and summer to come. We are going to have so much fun this spring he loves playing outside. Sean and mommy say goodnight for now