Had to Share this

One of the OS moms shared this and It brought goosebumps and tears to me at the same time ( never had that happen before!) I know I will refer to this many of times, especially through the hard times when the question is always "why us" .  We are truly blessed with this special child!

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."

"Forrest, Marjorie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect -she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a "spoken word". She will consider a "step" ordinary. When her child says "Momma" for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

"And what about her Patron saint?" asks the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."

Update sept 21

So thing have gotten more cazy if that is even possible! I started watching two boys before and afer school, and mike got a second job! But all in all things seem to be slowly going in the right direction. Therapy for Aiden is going good, its hard with the other kids and all the running around we are now doing to spend as much time as I want on his therapy, but he is getting stronger by the day! The therapist did mention today she wants to call the dr and talk to him about maby getting Aiden one of those helmets... to help get his head rounded out because he always wants and turnes his head to one side. While I know if he needs it great lets do it! And its more common to actually see the babies with these helmets, but its one more thing to have to explain to people and really just one more thing ...... but I know really its just the part of our "new" normal... being out of my comfort zone. I'm already starting to wonder how its gonna work, lol how the heck w his already big head will he fit in his carseat!!! Lol

So the benefit for Aiden was a Huge success! It really is amazing to see everyone there to support you... again very much out of my comfort zone lol. I'm just speachless with all the love and support me and my family got from so many people you don't know and to have people you've never met know Aiden and know his story. This is my goal! I want his story heard, I want the next family rid with this horrible syndrome to be able to see things are possible and to maby take some pease in our story. Most importantly just to know they are not alone!

Thank you is not a strong enough phrase to describe our gratitude to everyone who help with the event, who came and worked without pay, who donated, bought raffle tickets and came for haircuts and who came to just support us!!

EEG Update

Ok the neurologist's nurse called back and basically said that there has been a big difference in the eeg from before where it was very disorganized to now where Aidens background is now normal and there are none of the burst suppression patterns that you see with ohtahara syndrome.

What does this mean exactly we're not sure. The problem she said is, it is a syndrome and we are comparing apples to oranges because they are 2 eegs seen by 2 different people and they say at the time you fit into this syndrome ... she said the dr is very optimistic on his new eeg and she isn't sure if this changes his diagnosis, but it dosent change the treatment. On our apt on the 29th he wants to talk about drugs and possibly weaning aiden off of the phenobarbital which scares the Crap outta me!!!! Just because this was the first drug he was put on and we have used it in the past to stop the seizures when they were out of control. I worry of corse that as soon as we change something that the seizures will come back. But the dr said there are side effects with the phenobarbital. So we will see what he says on the 29th.

She also said that the activity in his brain that is or can cause the seizures is not localized to any specific are just little areas throughout which is a little discouraging because it means there isn't one area causing the problem, which would indicate he dosent have a malformation in his brain and wouldnt be a canidate for the hemispherectomy (brain surgery)  but they can use that information for treatment because some drugs work better for different activitiy... good to know!!! I was also able to get a straight answer on what kind of seizures aiden is/was having he's having complex partial seizures... information we didn't even know before!!! So although I would have loved for them to say oh crap sorry there's been a mistake! That is not the case (yet) lol and it dosent seem like it will change the treatment or what is currently going on. So I will celebrate the great news and will have to start my list of questions for the 29th!!!:

What does this all mean your probably wondering? i do know that with normal brain waves he does have a greater chance of developing !!!! This of corse is our biggest wish and prayer!!!

On another note I would like to thank everyone who is involved in helping, donating and spreading the word about Aidens Benefit this sunday! It is amazing and I wont lie a little overwhelming how many people my sweet little squishy's story has reached!!! 

Time goes by so fast!

Our beautiful baby squishy is 5 months old today and its amazing to look back and see how much we have been through and how far he has come in such a short period of time!!! And in the same instance it seems like just yesterday we were rushing off to the hospital .... man do we love this little boy!!!

EEG

So due to new technology I was able to obtain Aidens EEG results online, Which is awesome!!!! But I have found this is also a Huge mistake!!! I cannot decipher what the eeg finding are... So after 2 messages to the Dr and an email the nurse finally called me back. What it does show is that there is definite improvement in his EEG! It does still show abnormal and that there is activity that can cause seizures, but he isn't having silent seizures ( ones we cant see) and there has been improvement and even findings of normal brain activity!!!! what this all means ... Well the nurse stated that she has sent a note to the Dr to please comment on the findings and to compare the findings and she will call me back hopefully tomorrow... this is why getting the results online is horrible because of course its a horrible waiting game. But for now this is great news!!! and hopefully this will give our little miracle baby the chance to develop, to what point we still don't know but I continue to stick with our motto... We will not let anyone tell us what Aiden will not be able to do, but instead give him all the tools to do all he can.

I will of corse as soon as I have any more news update everyone on what all this good news means for squishy!!!

Also dont forget the benefit for Aiden is this Sunday!!! Me and squishy will be there so anyone wanting to love on him is more than welcome!!! Thank you in advance to everyone who has and continues to support me and my family in this crazy ride our lives have taken!!!

Nervous about our apt tomorrow

So we have an apt tomorrow morning for Aiden to have another eeg to see what Aidens brain waves are doung, if he is having any silent seizures. I am so nervous to see how the test is going to go first off .. he is not going to like them messing with him. And of corse I'm nervous to hear the results. Please pray for good news for our little squishy he deserves the very best... id love to hear that his brain is working normally , but I know this is not a possibility. Its just so hard, to know babies can be born with horrible things and even with heart and other problems, and can be fixed and have a chance at a "normal " life but the brain is so serious and cannot be replaced or "fixed" it jusgt sucks ...

So pray for my little man tomorrow! !!

OHSU apt

Soooo we finally had our apt at dornbeckers with the new neurologist. It went amazing!!!!

They spent 2 solid hrs with us and even brought in a pediatrician to also assess and collaborate. The diagnosis has not changed and I wont lie I've somewhat let myself sit in denial for the last 2 months that Aiden has been seizure free. So it was a little hard to have all the things you already know spoken out in the air. But the new neurologist is very very personable and said he is very happy with what we have done so far and how well Aiden is doing. Which is great to hear!

Some of the hard things to hear is that many of the things Aiden is not yet doing, and some of the things he is does show that things are not connecting correctly in the brain. He may have problems with his sight, basically the connection in his brain isn't processing the information he sees correctly. These are all things at this point I secretly know but have been in denial about.

At this point though he did say that we will do another eeg, and based on what that tells us about his brain pattern, if he's having any silent seizures were not seeing, and to put it bluntly, how messed up his brain pattern is we can start trying to work on getting that as normal as possble so Aiden can develop as much as possible. This to me is such amazing great news!!!! To not have the attitude that there's nothing more we can do, or to just stay stagnant with his treatment waiting for the seizures to come back.. my whole goal for my little squishy is give him everything in this world to do all that he is capable to do... and I finally feel like his doctor is thinking ahead and helping me to accomplish this. He also referred us to the ohsu therapy program so maby we can get him some more therapy or maby even more specialized therapy.

So although its still a hard thing to deal with I am thankful we are making some progress! And with as happy as little squishy is with his smiles and coos it just makes my every day and I am thankful for that and can't wait to see what else he's going to do....