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!

THIS IS WHERE IT GIVES ME TEARS & CHILLS ...

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!!!

HOW AMAZING IS THAT?!?

Another Footprint in Our Journey

Besides being at the hospital from 10am to 5:30pm, the day went quite well. We started with Aiden's ultrasound on his kidneys (to help rule out Branchio-Oto-Renal syndrome) and they looked "unofficially" nice & healthy. How can a mom not ask? I know it's not their job, but they know what they're looking at, and I'm going to get any info. I can when I can. PLUS, Aiden has BOTH kidneys! This is good, because my dad only had one and this is another sign of BOR.

One hungry, tired boy, waiting oh so patiently!

After the ultrasound, we had about an hours wait until the MRI. We got called back to start the process at about 12pm, but Aiden didn't go anywhere until after 2pm and my boy was HUNGRY! They were going to give him an IV and then drops to sedate him (I didn't like the IV thing before sedation), but then decided that the better bet was to give him a local anesthetic since the MRI was going to take almost 2 hours (on his head/ears & neck for the branchial cleft sinus he has). I'm glad they went this route because I didn't want them having to sedate him again through IV once the original "drops" ran out after 45 minutes. My hardest part ... watching my little man get the mask ... broke my heart and I just couldn't watch. "Strong mommy ... be strong for your baby ... he's going to be okay", is all I could keep telling myself.

I sat and waited, and waited, and waited. Finally, after about 2 1/2 hours, they called me back. My baby was awake (and very hungry)! By the time I got back there he had already sucked down 2 bottles of pedialyte. After snuggling my baby, I asked the question about how soon I could get the results, the anesthesiologist said our ENT should have them by next week and then gave me Aiden's MRI scans & ultrasound on a CD to take up to Maryland with me! How about that! I'm taking that CD into the ENT's office next week ... I can't wait two - four weeks for results, especially if I have them in my hand now, with no clue what I'm looking at!!

All in all, Aiden did great - all day! What a trooper he is! He just amazes me ... at 5 months old. I am so proud of him! On the way home I thought about all he's been through, all we've endured together, all we've endured as his parents, and we've only just begun. Yes, I have my bad days, my sad days, my angry days, but so much more I have my happy days. And I reminded myself, it's all what you make of it, and I choose to make it a great experience!

We just completed a big part of our journey, a piece I like to think of like a fork in the road. This piece will tell us which direction we need to go next. And no matter which way it is, we'll be ready to take that next big step. I have faith that God will lead us in the direction we're meant to walk. We're on our way! How exciting!

Just a Little Stressed

I didn't realize when I woke up this morning how stressed I was about Aiden's MRI & kidney ultrasound tomorrow. I woke up to a call from the realtor's office that they wanted to do TWO showings on my house between 9 and 12 (yeah?!). WHAT?!? That's great and all, but I had to get Kailyn to school, Aiden fed, me ready, and clean, clean, clean ... all within less than an hours time.

SIDE NOTE: I've been meaning to post about our upcoming move, but have been way too busy. So there's a good possibility we're moving to Maryland, a state I do not know, but am sure will come to love. What's crazy is that when I first learned of Aiden's deafness, I did a lot of research. I told my husband, "We have to move to Maryland. I want Dr. Niparko (from John Hopkins) to implant his CI's." I then learned there are many GREAT CI surgeons throughout the nation, but there was something about John Hopkins. Mike hadn't planned this job. This job fell in his lap. How crazy is that? It was meant for us to be up there. So ... it's in the works, we're leaving within 4 - 6 weeks and I'm a nervous wreck about the whole thing. Gotta pack, gotta get all of Aiden's appts./records complete so we don't have any delays on getting his CI surgery, gotta find him a new team up there (which is so hard, because we have an AWESOME team for him here), gotta sell this friggin house, gotta find a new house, gotta, gotta, gotta do a WHOLE lot. So there's my "moving" post in a nutshell! I'll leave out all the emotion because right now I just don't have time for it! I do have to say that this wonderful mommy was a huge help in bringing some peace of mind about the area and has me very excited about it! *big sigh and a smile*

Anyway, (sorry, my ADD kicked in there) it wasn't until the lovely Miss Diana from my hubby's work said to me "Good luck with Aiden's MRI tomorrow", that I realized, holy shit. His MRI is tomorrow. My baby is going under. And it ALL hit ... I had to leave and as I drove away I just started to cry. I'm so excited to get this piece of the puzzle finished, but I HATE all my binky boy has to endure! I've accepted his deafness. I love every bit about him and wouldn't change a thing, but this is just a small piece of what he has to come. I hate that he has to get sedated. I hate they're going to have to poke and prod him. I hate that I'm going to have to sit there and be so strong for him when all I really want to do is cry like a baby myself and take this all away from him.

And yet, this is just the beginning. The beginning of letting Aiden hear. There will be more poking and prodding. There will be SO many more appointments we have to run to. There will be so much more going on than there is now in my busy, busy life. And even though I hate that my baby has to go through all of this, I know the day that I hear my baby tell me "I love you mommy" and he hears me say it back, all this craziness, all this nervousness, all this nonstop worry, will be well worth every bit. Well worth it all, for my little man.

Another Lesson at the ENT

Well, we had our appt. yesterday with Aiden's ENT. He didn't seem TOO concerned about the branchial cleft sinus, but said Aiden would need surgery to get it removed so it does not become infected. He said it's a fairly simple surgery, but with Aiden's age we'd probably spend one to two days at the hospital, depending on how deep the sinus is into his neck. The interesting part is that this MAY have to do with Aiden's hearing loss.

There is a syndrome, branchiootorenal syndrome (BOR), that has to do with the branchio cleft sinus (branchio), hearing loss (oto), and problems with the kidneys (renal). Dr. B says this is rare (I read 1 in 40,000), but with Aiden having two of the three, we need to check the kidneys too. He said what he has seen is the child being born with only one kidney or a malformed kidney, but that there USUALLY is no further problems associated with it (my dad was born with only one kidney, but never had any problems with it nor his ears). I started reading things on the Internet, but stopped after reading about an 8 year old little girl on a kidney transplant list who has BOR ... bless her heart! I can't get myself all worked up over something that may not be. I just can't. Not now.

So ... our next step with this is an MRI. Our ENT office is in the process of scheduling us a fun filled day (yeah right!) of appointments at Children's Medical Center in Dallas. Dr. B wants to do the MRI on Aiden's neck and at the same time, go ahead and do the MRI on his ears to see how his cochlea's look and verify candidacy for CIs. Even though I don't want to see my baby sedated, I'm glad we're getting two things done with one sedation, and I've been so anxious to verify candidacy! Plus, we'll get his ultrasound on his kidneys done, and bloodwork for Connexis 26 (which will tell us if his loss is non-syndromic).

Another day in the life of Aiden. I hate all that he has still to endure ... I just hate it. Yet I know he will be okay. I just have this peace about me ... praying definitely helps along with a positive "everything's going to be ok" attitude. It also helps having Ryan upstairs belting out Rolling Stones, Give Me Shelter, on Rockband! (huge smile!) If you ever need a chuckle, call me and I'll let you listen!