Wednesday, November 23, 2011

Awesome news!!!

Since Addison turned six months old Sunday, she was finally old enough to have a TB skin test done. Her nurse came by this morning to read the test and it was negative!! So thankful and thrilled!! No more INH meds twice a week. No more nurse visits once a week. No more restriction on Tylenol usage (INH and Tylenol both metabolize in the liver and they didn't want to stress her liver too much). No more masks for the doctors at Duke to wear when we're there for her infusions! YAY!!

Addison also had an MRI this week. Just a fast acquisition one.  She rocked it out. Laid there, looking all unimpressed. They swaddled her and wrapped her in what looked like a very large blood pressure cuff and then blew it up to hold her as snug as possible in the machine, so she wouldn't have to be sedated.

 As soon as we got back to the car, I put the disk into the laptop and pulled up the scans.  They looked good to my eyes. Not much change since August, but stables vents is a good thing. We were told no news was good news regarding the official report and it's Wednesday night, and I haven't heard from George's office. So I'm officially declaring good news! I will talk to George about the size of her vents not changing much in three months... but that can wait til her next appointment in February!!!

August on the left, November on the right. Still a lot of fluid but STABLE

We have plans to hang out around the house tomorrow and watch the parade and football. We aren't heading to Mom and Dad's til Friday for our Thanksgiving celebration on Saturday. Will post more about Thanksgiving after the weekend.

Happy Thanksgiving everyone!! So much to be thankful for this year!

Sunday, November 20, 2011

Happy 1/2 Birthday Addie Baby!!!

We love you so much! I can't believe you've been here for six months already. You've enriched our lives so much and touched the hearts of so many. Stay strong baby girl. Keep growing and thriving and beating the odds.

We celebrated her 6mth birthday with yummy green beans, her first taste of real food (rice cereal does not count). Addie didn't agree on the yummy part.

Monday, November 14, 2011

Neuro Follow Up and A New Specialist

Adam, Jackson, Addison and I had a full day today!! Addison had appointments with both her ophthalmologist, Dr. R, and her 3 month follow up with her awesome neurosurgeon, Dr. G!

She was a rock star. She didn't cry when they put drops in her eyes to dilate them. She did fuss some when I had to hold her down and her ophthalmologist held her eyelids open to look at her optic nerves. I'm thrilled to report that her optic nerves look great. I know of several hydro kiddos that have optic nerve issues, where the nerves are either thin or short because of the pressure hindering their developmental while these babies are in utero. Thanks be to God that Addie's are "normal". Her doctor feels she may be visually delayed but that she's catching up and has normal vision as well and doesn't need glasses. She ALSO doesn't think Addison has strabismus but that she has pseudostrabismus . Basically that her eyes aren't actually crossed but appear crossed often because of how broad her nose is and as she grows and her nose develops the appearance of her eyes crossing will change. Addison did not cross her eyes for the doctor, of course. She had just woken up for a nap, which I made sure to tell the doctor. An infant's vision is always best when they are well rested so I knew she needed to know that little tidbit. I had my camera with me, thankfully, and pulled it out to show the doctor what we had seen as crossed eyes. She pointed out the reflection of the flash in her eyes and that it's lined up, which indicates that the eyes are actually aligned. Good to know and you can believe I'll be watching for that in future pictures.
Waiting in the eye exam chair.

As far as CVI goes, her ophthalmologist doesn't think she has it. I told her about the brain damage and evidence on her MRI and the warning that Dr. G gave us about the brain damage in her occipital lobe but she tracked well for Dr. R and scanned her face, etc. So I'm sitting there in the doctor's office holding her, and asking questions like.... so we just need to keep working on tracking exercises? And Dr. R. is like nope. I'm all but do we need to keep using lights and texture and ..... and..... and Dr. R is like patting me on the hand saying "She has NORMAL vision, normal structure and no muscle issues. You don't have to do anything." And I look at her and go "But I don't know how to handle not having homework!" And I laughed. It was such a WONDERFULLY new experience to not have to make a list of things we need to work on.  I do realize that diagnoses can change and doctor's opinions can vary, so I'm not unaware that we may have some new vision labels at her six month follow up appointment but we CELEBRATE every piece of good news we get and try our best to live in the moment and that was a great moment.

We left her eye doctor and went by Torchy's to get my taco fix. It was a beautiful day outside, thankfully slightly overcast so we didn't have to worry about Addie's dilated eyes too much. She slept in her stroller while we sat on the patio and chowed down on tasty tasty shrimp tacos!

We were e a r l y (what?!) for Addie's nsg appointment and they were running.... get this..... ON time?! Double what?!! We were back in the office only 5 mins after her original appointment time. We saw a CNP first... and to be honest, I was a little taken aback by her line of questions. After asking her age, the first thing she asked was "So is she sitting up yet?"

Don't get me wrong, I KNOW Addison is doing amazing. I know that the amount of head control she has, her ability to get up on her arms while on tummy time, the fact that she's rolling over, that she's weight bearing on her legs and bouncing in her saucer already, the fact that she's soooo close to sitting up and isn't even six months old yet... well those things are all awe-inspiring really and not a day goes by I don't sit back in wonder as I watch her. I know that she is pretty freakin' awesome. But I also know what hydrocephalus can do. I know that sitting up by 6 months in a severe hydro kiddo is pretty unheard of.  And if I know those things, I would assume the CNP would too.

So.... I was surprised that a medical professional that works in a pediatric neurosurgeon's office would ask such a sensitive milestone question like that. It gave me pause and made my heart ache, not for Addie who is not sitting up yet, but for all those other hydro moms and dads that are still waiting for the first smile, the first head lift off the ground during tummy time, the first laugh, the first step months past when their kiddos "should" be doing these things.

I looked at her and blinked my eyelashes a little and said... "Not yet. But she's doing amazing for a child that has a 2 yr old's head on a 12 month old size body. " (She weighed 20lbs 11ozs in all her clothes!!!!)

We saw Dr. G and as always LOVED him. He does want a scan done, just to maintain baseline scans. He said he is "happy" and "not concerned". Her head circ had jumped 2.6 cms in 3 months which is more than normal. But Addison's size is MORE than normal. Her soft spot is sunken and we know her eye exam showed this morning that her brain isn't under pressure so that contradicts the jump in head circumference being from pressure. But I'm glad to be getting a peak inside her little head.  To be sure.

He was talking to Addie and told her "I don't think your mom likes me much." To which I replied "Her mom likes you very much, but she doesn't want to have to see you much." He joked about it hurting and that he's just the friendly neighborhood neurosurgeon that everyone's happy to see when they need him, and then poof, no one wants him around anymore when things are good. *chuckles*

As much as I do love him, and I do. Any person that performs life saving surgery on your child is gonna have a special place in your heart....always! But as much as I do love that man.... I'm hoping we don't have to see him til February...which is when her next follow up is scheduled, barring something wrong on her scans.

The MRI that he ordered is just a fact acquisition scan, so no sedation. THANKFULLY! And he wanted it done in the next two weeks. He blamed our 'jetsetting' ways for the reason he wanted the scan. Addison's second stem cell infusion is scheduled for December 6th. So excited about it. We are planning on meeting Adam's family over the weekend and another hydro family is scheduled for their daughter's second infusion the same day! It'll be our first hydro meet up! YAY!

Praying her scan shows lots of fluffy brain tissue and no issues so we can get those stem cells infused on schedule!!