Sunday, January 29, 2012

Hydro Angels meet up

We attended the first Austin area Hydro Angels Over Texas (check them out here) support group today and it was awesome!! We were one of ten families that were represented. The founder is an amazing woman that has hydrocephalus and is still able to lead this wonderful organization in support of families and individuals all over Texas.

We even had the awesome added bonus of meeting a family that lives in the same community as we do!! How incredible is that?! Their son is just two months younger than Addie (TO the day!) and is a CUTIE! I look forward to getting to know this family even better and watching our kids grow up together and NOT alone in their condition. God is GOOD!! It was such a wonderful experience to talk to a family that not only knows hydro speak but uses the same doctors!

Today was a GOOD day!

I am now officially signed up as a hydro angel to offer support to any hydro family that needs it!

Now I'm kicking myself for not taking any pictures... hopefully we will have more opportunities in the future. Next group meeting is in March.

Friday, January 27, 2012

Eight months and an update!

Miss Addison turned eight months old last week. It was a very special day in our household. She shared her eight month birthday with her brothers 4 yr and 9 yr birthdays. 20 is a very special number in our house!
Big girl in her little bitty chair!

Birthday boys!

Addison is sitting completely independently now per her PT goal. It's hard to say when she started this officially. She could sit up for a few seconds before Christmas.... and I have some cute pictures of her sitting under the tree to prove it. By New Year's she was sitting up by herself for minutes at a time, on a mattress pad so if she does lose her balance she won't bonk her head. Now she can sit for 15 - 20 minutes without falling over. So we have removed sitting up from her PT goal list.

She's also rolling all over the place. She can now roll over front to back and back to front. We are working on getting her to roll both to her left and right side. Her next goal with her PT is crawling which is an amazing thing to think about!!

She loves her exersaucer. She bounces and spins and plays with the toys. She has started noticing herself in the mirror which is wonderful! She is now sitting up during her baths instead of lying back which makes bathing her by myself much easier. She still isn't big on baby food. We're making baby steps with solids. I do wonder if she has some kind of bad association after all the times we had to force the INH down her. Hopefully this will fix itself in time. I did have her PT feed her the other day to check for any issues that would be related to hydrocephalus. Her PT doesn't feel like it's muscular. If anything it could be sensory, but she does take some food, she just doesn't like it much. We may need to get an OT assessment in a few months but we're not in a hurry. Lord knows she's not lacking for caloric input. She weighs nearly 23 lbs! She's outgrowing her 9 month clothes. I have boxed up the majority of her six month outfits. I have saved a few for sentimental sake. But it's hard to get sad when your baby is growing and thriving when you have a situation such that we do.

In medical news, Addie has had her second double ear infection. Boo. She's such a tough cookie. She shows no signs of being in pain or being cranky or out of sorts, and the only way I've known anything was up both times was dried blood in her ear when she wakes up. Her right drum has perforated twice now. Her pedi, Dr. N, said the perfs are tiny pin prick size holes which is good I guess... but I do wonder if there is a connection to her hydro. It's her right ear which is the worse side hydro wise - where there was the most fluid and is where her shunt was placed. Guess time will tell. I won't be surprised if we end up with tubes in a few more months though.

In more hydro related news, Addie has her next neurosurgeon appointment coming up in less than a month.  I believe I posted earlier about my concern that her ventricles haven't gone done much in size since August. Her nsg has ordered another MRI which I'm very happy about. Since it's a fast act MRI, it's a quick in and out scan with no sedation.  This will allow us  to talk to her surgeon about the scan,  instead of waiting and seeing if we receive a phone call a few days later when he has a chance to review it. If her vents still haven't gotten smaller,  I'm very curious to see what Dr. G does about it. On one hand, she's still doing remarkably well! And I'd hate to mess up a working shunt. On the other hand, we want her brain to have a chance to expand while she's still in the brain growing stage. I'll update the blog as soon as we know what the course of action (or lack thereof) is.

Her eyes are definitely crossing more. Duke's report even diagnosed the strabismus. So it was missed by her ophthalmologist. I tried to get her in sooner but it would mean switching docs to one I haven't heard good things about so we are going to leave it alone and wait til May to see what her doc wants to do... patching first.. surgery... Botox injections, etc. I WILL be taking photographic evidence in with me of her eyes not being aligned.

We enjoyed our first Christmas as a family of five and celebrated New Year's Eve low key at home. Which was nice. It was a bittersweet night for me, saying goodbye to 2011. What a year for our family. Definitely one I will never have to stop and wonder... now where was I in 2011? What was going on in my life in 2011? It's a mile marker kind of year in the journey of life.

Addie with my neice - Christmas Eve

First family picture since Addie was born.

The boys are doing well. Jack is proud to be a big ol 4 year old and Grayson slid into 9 like he's been there for months already. School is half way over... already!

We don't have a lot coming up, which is nice! We do plan to attend a local hydro support meet up this weekend here in town.  Spring break will be spent at home this year, working on house projects. We've been thinking about a garage sale!! I don't know if we're that brave but a lot of baby things are being outgrown (Praise God!) and since we are done in the baby making department, we no longer need to store them for future use. Plus we have a lot of furniture we aren't using taking up a bunch of space in the garage.

Believe it or not, we are already starting to think about summer vacation destinations. One vacation will be wrapped up with Addie's third and most likely final stem cell infusion. We are driving this time and plan to make our way through Nashville on the way to Raleigh to meet up with a bunch of hydro families I've met through an online support group. Very excited about this! We plan to detour back through Atlanta on the way home to visit Adam's family. Hopefully we can take another road trip to Florida toward the end of summer to visit Adam's mom for a longer more relaxing vacation... and the fact that Mimi lives by the beach is a big BONUS! I look forward to getting pics of Addie in the sand! It will be a full circle kind of the last time we visited was the week before we got Addie's diagnosis of hydrocephalus. I pray and hopefully plan that we can return to the beach as a family of five this summer!

I feel this blog is lacking in updates but rest assured this is a no news is good news blog! I  started the blog intending to update on Addie's medical journey and Praise the Lord she's been doing so well there hasn't been much to update. I will try to do better in making it more of a blog about her wonderful amazingness and less about just the medical stuff!

Until then!