Thursday, September 18, 2008

Cheers, Tears & Lots of Chills

It's been some time since I've posted, and SO MUCH has gone on. I just have to say that I am a very blessed person, along with God, my daddy's looking out for me right now, and I feel it! Where do I start?!? I could really post about so much with Aiden, but I'll keep this to one of the biggest steps we've been waiting for ... not just his MRI results, but even more chilling after.

The first part of this is MRI results, but you have to read on! I have been through a lot the past few years, and I want everyone to feel my happiness in the most recent news I received. Not that I feel "I deserve it", but I feel my boy deserves it. But I do know, in the past couple of years, we have always kept our faith. I believe and I continue to pray for God to lead my way, for Him to take on my problems and help me each step. And I never give up on Him. NEVER. And He has taken care of us.

CHEERS: We went in and spent two hours with our CI surgeon/ENT this week for our MRI results. All in all, his results are GREAT. No abnormalities in structure. The hearing nerves are in place. Everything looks "normal". Which is good. Which is great. It doesn't answer our question about Aiden's hearing loss, but we're okay with that. Kidney ultrasounds, check, good to go. They did find an "arachnoid cyst" on his brain, but actually, the report said "suspected arachnoid cyst". Not definite, just suspected. Our Dr. said this is not uncommon (1 out of 10 to 15 MRI's show this), but is still referring us to a neurosurgeon to make sure this is nothing to worry about. I'm okay with this, I have that feeling that it is okay. His brachial cleft sinus, this will have to be removed, preferrably before he's a year old, for scarring and surgery remembrance issues. He also had a little bit of fluid in his ears. If the fluid doesn't clear up, then they'll put in tubes and remove the brachial cleft all in one surgery. We'll figure this out after a couple months of letting the fluid clear up with some antibiotics. All in all, MRI GREAT, brachial cleft, as long as it's not draining and infected, good to go, but get it removed before preschool age (I figure if he doesn't need tubes, they might as well do this surgery with the CI surgery).

Side note to parents on ear fluid: I took Aiden in to our pedi. about a possible ear infection, no fever, he just kept tugging at his ears. They said, yes there is some fluid, but no ear infection. I told them, he can't keep fluid because of his path of getting CI's. They wouldn't put him on an antibiotic and told me not to worry about it unless he started running fever. I knew I was heading to the ENT a few days later and sure enough, our ENT said no fluid allowed, what-so-ever, and put him on an antibiotic (and he still does not have an infection, yet this fluid is not clearing up). So, even this fluid doesn't clear up, they will put tubes in, because fluid is not allowed prior to any CI surgery!


We then discussed our move to Maryland. Our Dr. said he recommended we go see Dr. John Niparko, at John Hopkins Listening Center (which I HAVE known since day one is where I wanted to go), and that he would have his office contact John Hopkins and fax all of our info. there. I felt GREAT! (I have been having a hard time with leaving my wonderful team here, but hearing this, just reitterated this move was meant to be).

On the way home I got a call from our ENT's office. The people up at John Hopkins wanted me to call them directly. No problem, because I have called & emailed many times, trying to get appts. when they kept telling me they couldn't do anything for me until they had all of his audiograms plus some. I was more than happy to call and actually hopefully get somewhere. I called and left a message, feeling, once again, I wouldn't hear back.

I heard back. Within a half hour. She got Aiden's history, his audiograms came in the mail THAT SAME DAY (which I had sent 2+ weeks prior), and then , after chatting a bit, she said to me,

"Great. I'm going to schedule your family a surgery consult with Dr. Niparko."
"You mean, for him to actually do my son's surgery?" I replied.
"Yes, he'll be your s0n's CI surgeon assuming everything works out."

TEARS. SMILES. LOTS OF TEARS & SMILES (OH YEAH. AND LOTS OF CHILLS). You don't understand. I didn't understand. Five months ago I was told my son was deaf. As his mother I looked up every resource on the Internet and what I came up with, for whatever reason, is that I WANTED this doctor TO IMPLANT MY BABY. Why? I don't know, what I read IMPRESSED ME, it helped me in a time of need. Then this job literally fell into my husband's lap ... he didn't look for this Maryland job after I told him about this doctor, it just happened. Then my ENT (who I would love to do Aiden's surgery as well) recommends us to this surgeon when we tell him we're moving. Then we GET ON SCHEDULE with this DR. that I first wanted for my binky boy's surgery. The surgeon I wanted BEFORE I EVER KNEW WHAT WAS AHEAD OF ME IN THIS WORLD I'M COMING TO KNOW AND LOVE, is going to give my boy cochlear implants!!!



Herding Grasshoppers said...

You're makin' me cry... again :0)

"For I know the plans I have for you" says the Lord...


leah said...

WOW. That gave me chills, too! God works in wonderful ways, and it is amazing to think how everything has come together for the good!

Mom to Toes said...

Oh, this is such an amazing story!!!

Christian and Lily's Mommy said...

Christian and I can't wait to welcome you guys to the Hopkins Implant Family, but more importantly to MARYLAND!

Mikki said...

isn't it so amazing the God is always working behind the scenes even when we don't even see it at the time. Finding out my children were hearing impaired 4 months ago and what my life is now is amazing. God has a plan for each and every one of us. Give thanks to Him. Thank God we were our childs parents, here and able to provide to them the necessities they need to become all they can be!!! Congrats to all your great news!!!! That is awesome!!!

Anonymous said...

I am so happy for you all and then sad at the same moment, knowing that no more quick trips to see you all.


Bill and Shelly said...

God is good and in control of everything.
It is so great that even before you move you have a team in place.
Can't wait to hear that a date as been scheduled for the surgery.

Unknown said...

It always feels good when uncertainty vanishes and a sense of peace calms the storm. Heavenly Father has a plan and we will be blessed if we remain faithful. What an amazing story! You deserve it!!

VBnBama said...

You and I are so similar. We look at things in the same ways. I love this story! And if Aiden gets any cuter, I'll have to come to MD and pinch those little plump arms I see in that high chair picture!

Anonymous said...

Tammy...simply said...God!
We are so happy for Aiden!
Leah, Sherry & Caden

Anonymous said...

I just wanted to invite you to the Arachnoid Activist website. I have had
11 brain surgeries and countless procedures due to my arachnoid cyst. I started the forum because too many patients were being told their cysts don't matter. Please stop by to read some important info and to join in our fun conversations!