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!!

Some new experiences for Addison

I left Addison for the first extended amount of time on Friday the 21st so I could attend the SYTYCD concert with Carol as a birthday celebration. Carol and I had a great time. It was a much needed mommie night out! Addie did great with Aunt Missy and was sleeping peacefully when I returned FIVE hours later.

The next day, Melissa and I took Jack and Addie to the outlet mall in San Marcos as a continued celebration for my birthday weekend. Addison did wonderful. She loved her stroller and all the new sounds and environments. She stayed in her stroller for over three hours, happy as can be. She took a bottle once and dozed off for a while. Put her feet up on the cup holder, played with her butterfly hanging toy and even laughed out loud at her crazy mom a few times. It was a great day!! She was so well behaved that it allowed me to spend way too much money! ;)

Wednesday Addison had her first outdoor playdate at the local DQ playground. We met some friends of ours from Grayson's school and the boys played on the playground while Addie hung out with us moms. Interestingly, while we were outside there was a fire truck and ambulance that came screaming by. I watched Addie very closely to see how she would react to the noise, after our football game issue, and she was totally unphased. I was surprised really. I thought that it would be a similar type noise event as the bell tower and the band playing but she didn't seem to mind at all. Slept through it really. So who knows. It will be interesting to see what other types of noises set her off and what doesn't. Maybe the football game was just a perfect storm of stimulation and stranger awareness.

I got a video of Addie laughing today for Facebook. She is laughing and smiling more and more every day, though there are some days that she just isn't in the mood. I find her little moods pretty amusing. She definitely has her own mind.

We have a busy next couple of weeks (well months really) coming up. This weekend is our last home weekend for a while. Monday is Halloween. Addie will be going in her stroller, rocking her orange and black tutu and cheering on her brothers as they trick or treat.

Next Wednesday, the 2nd, we have a meeting with her PT and service coordinator to up her PT to twice monthly. Really working on her reaching and strenghtening her core to help her sit up.

Next Thursday afternoon, we're driving to Llano to watch Raychel cheer and then staying over night Thursday so hopefully I can attend Jacob's last game of the season while Mom watches Addie. Won't be attempting to take her to a noisey game again this year. (IF ever....)

The weekend following that is the Battle reunion which I'm looking forward to. I didn't go last year because I was soooo sick with morning sickness. So it's been since Elizabeth's (a cousin) wedding since I saw our extended extended family.... and I also look forward to an opportunity to show off Addison! Naturally I already have her outfit picked out!

Love this time of year! A cold front is rolling through as I type. So much to look forward to and be grateful for! Tis the season for thanksgiving afterall! But I really am trying to be thankful all day, every day and not just one day a year.

Happy Fall everyone!
~ Aimee

Look who is 5 months old (already?!)

4 month well baby appointment

Taking a few weeks ago... She's smiles much easier now!

Addie had her four month well baby appointment today and it went great! She weighed 18 lbs 9 ozs and is 26 and 1/2 inches long. She's grown 2 inches and gained 2 and half pounds since her last well baby on August 31st. Her head circumference has gone up 2 cms in 6 wks but Dr. N isn't concerned because she's growing at a faster pace overall. We just make big kids. She is going to forward her measurements to Dr. G (our nsg) just to make sure he doesn't want to see her sooner than her next appointment with him on November 14th.
She said that Addie is developmentally a 3-4 month old. Really good news to hear! For her to only be behind, in EVERY milestone, including the physical ones, by a month is AWESOME news. Dr. N was thrilled with Addie's head control. Addie showed off, picking her head up to a 90 degree angle when on her tummy and she even pushed up on her elbows for her. Dr. N squealed... and Dr. N doesn't squeal. So it was a proud momma moment for me, for sure!
Dr. N is pleased with Addison's improvement in her vision, but she is still visually delayed so I'm glad we're going to the opthamologist next month to get that road started.
I spoke to Dr. N about starting Addie on foods and she feels that she does have good enough head control to start. So we're going to start her on rice cereal in about two weeks and then veggies in about four weeks. I'm excited to see Addie start foods. I know a lot of hydro kiddos have sensory issues and food issues, so it will be interesting to see if Addison's love of nursing carries over to a love of solids.

We are a very busy household and I'm loving every minute of it. It's difficult to juggle everything but there's never a dull moment and the house is often filled with laughter. Even Addie's laughter has joined in. Sweetest sound ever. It's hard not to get misty everytime she laughs. Mom got her to laugh the first time, right after she turned 4 months old. I caught the tail end of it as I was in the other room getting dressed! Stinker. But thankfully I have had many encore performances from her. So thankful.

Frightening Friday Night

We had been planning for about a month now to take the kids and go see Jacob play football on October 7th. His first district game was in a town very close to our house so that seemed like the best game to attempt.


I had Addie an adorable black and orange tutu to wear, their school colors, and we were all set. We arrived about 15 mins before the game started and were in time for the run through and welcoming of the boys on the field. Addie was doing great! She was smiling at Maurie and seemed happy to be out of the house.

Raychel got back from standing beside the run through and went to pick up Addie out of her carrier. I was helping to unfasten her straps and stuff and as Raychel was lifting her out of the carrier, Addison started to scream. Raychel tried to walk around with her to calm her and it didn't work, so Melissa tried. Took her far down the side of the field, away from the stands and band and I could see Addie was still fussing. I walked down to see if I could help and she would settle and then scream, settle and then scream. I took Addie out to the car to try to get her away from the noise and try to nurse her. She wouldn't latch. She'd scream and try to nurse and then scream some more. At this point, after trying for what may have been a total of two minutes, I texted Maurie to have Melissa bring all my stuff and the boys. We were heading toward home with the very real possibility of detouring to the Children's Hospital along the way. The town we were in was probably 45 mins to Children's and we had to head towards home to get to the hospital anyway.


Thankfully Melissa decided to come with us and offered to drive. I was able to sit in the backseat with Addie and try to calm her down. I did a no no and got her out of her carseat and held her and rubbed her back and talked to her in a soft voice. I told myself that if she was still crying when we got to the other side of Hutto (where we had to decide home or hospital) that we were heading straight to Dell Children's ER.


About five miles down the road, Addie started to settle. I wish I knew how to describe the way she was screaming. As a mom of three, screaming babies aren't a new thing to me. But the way Addie was screaming was different. It was a scared scream, an in pain scream, a why did you do this to me scream. I was scared that it meant something was wrong with her shunt. As a hydro parent, you can never dismiss the possibility of a neurological issue. I knew her soft spot wasn't bulging, I knew her eyes weren't sunsetting, I knew she wasn't vomitting. All classic signs of a shunt failure. I knew Dr. G (her nsg) told me that shunt failures typically don't go fast like that. They are slow to build. They are gradual and rarely emergent. But I do know they can be emergent. And I was trying to figure out if that was what was going on. I knew the decision would be mine. So I decided that she had until we got toward home to stop screaming.


I was very thankful that she quieted. She snuggled in to me and looked around in the dark. She didn't pass out or fall asleep which was oddly comforting to me as well. She didn't stop screaming out of exhaustion, she stopped because she was comforted,or at least out of pain for the time being. When we got her home, she acted as if nothing had happened. She was alert, cooing, looking around, trying to sit up. All typical Addie behavior.


The best thing I can figure out was it was noise related. The band had just settled into the stands and started playing. The stands were metal and I'm sure there were a ton of vibrations. She started crying right as she was picked up by a "stranger" (sorry Raychel!) and was taking out of the buffer of her carrier seat. I think it was just too much all at once for her.


She did act similarly to this when we were on the Duke campus and the bell tower started chiming. Not to this extent but you could tell the loud noise wasn't pleasing to her ears.


Friday night was just another reminder how quickly things can change in the life of a hydro child. I was very thankful we didn't end up at the ER and I'm very thankful this was the first time it was a real consideration. Realistically I realize we will have to go to the ER at some point in her life. I'm just thankful we haven't had to yet.

Happy 1/3 Birthday Addie Lea!!

Addison's 2 mth well baby... A month late and another week in review

Addie finally saw her pediatrician last week. Because of her NICU stay at a different hospital than I normally deliver at, and a freak accident that our pedi's husband had that kept her out of the office for Addie's two week follow up, we had only passed her in the hallway at Addie's nurse visit for the second part of her newborn screening up til now.

I'm happy to post that Addie's pediatrician is very pleased with Addison. Said her tone looked great. The fact that her hands are already opening and aren't still clenched into fists is a very good thing. She's bright eyed which is encouraging for her vision delay. Dr. N said that Addie is delayed overall but she would still put her on the normal developmental spectrum as of now. Which is wonderful news! Praise God! We know this can change, for a variety of different reasons, but we take good news anytime we can get it!

Addison is being referred to a pediatric opthamologist but there was no rush on getting her in. Her appointment is November 14th, the same day as her next neurosurg appointment. Thankfully, Adam will be able to take off that day, and D will be able to pick up Grayson and we can get it all taken care of in one day. Hopefully! Praying the two doctors appointments don't result in follow up testing, such as an MRI.

Addison is doing well. She did have three shots at her well baby and seemed a little less like herself for a few days but thankfully no fever! When she's tired and not feeling well, I can really see her struggling with her vision. So I know it's taking effort to get everything working together. BUT when she's rested and feeling better, she's so much more alert! It's wonderful. I'm learning to cherish those moments that we make eye contact. She can do it. We know she can see. It's just a matter of how much she can see.

We also had her PT eval last week. She'll be starting physical therapy once a month for now, and then we'll most likely have to increase the frequency as there are more physical milestones she should be reaching. Our new goal is rolling from back to side and from side to back. Something Addison shows little interest in. But we're working on it! Tummy time is going well. She's really starting to get some clearance when she lifts her head. And her head control while upright or on my chest is getting much stronger. One day at a time!

Grayson is doing well in school. Homework has begun in full force and I'm fully appreciating the required balancing act that is being a mother of three. So far, so good. But many a night I was counting down the minutes til 9pm so I could crawl into a hot bubble bath!

Grayson starts swim team practice this week. He's in the Swim 101 developmental class for kids that are interested in swim team but don't have the skill set to compete yet. He will go two days a week for 30 mins.

Jackson had his first speech class this week and loved it. His teacher said he was a sponge! Which is great to hear. And his vocabulary has really taken off from when they did his first assessment last year.



First day of 'school' for Jack!



Melissa, with a small amount of my help, pulled up the carpet in our master bedroom this weekend. We have plans to put down wood floors in there. Melissa and I are going to attempt to do this ourselves over Thanksgiving break! This will be our test run, conquering the master bedroom first. If we can figure out how to do it ourselves, without totally screwing it up, it will save quite a bit of money. Enough money to equalize the cost of wood v. carpet for the rest of the house! I'm so excited!! Melissa and I also went couch shopping. Addison and Jackson both love to go! They enjoyed it as well. No purchases were made but some brands were eliminated from the hunt!

Currently, in our area, there are some massive wild fires. It's so sad. Nearly 350 homes have been destroyed in a neighboring suburb of Austin. Saying prayers for everyone affected by the fires. We need rain desperately. Thankfully we've had a small cold front come through today. The lows in the mornings should be down in the 60s this week. I cannot express how excited I am to walk Grayson to the bus stop in the morning and feel that first touch of fall in the air! I am so ready for Fall!! My favorite season, hands down!
Football has already started! Makes for a happy Chapman crew! Melissa and I listened to the UT game on the radio Saturday. NFL opener is this upcoming Thursday. Adam and I are playing Fantasy football again this year. I feel like I missed out on most of football last year because of how rotten I was feeling with morning sickness. So I'm excited to be feeling ready for some football this year!
Our anniversary is coming up soon. We already have a sitter lined up (thanks Aunt Missy!) for a long over due date night. I think we're both looking forward to it!

This upcoming week, Mom and Dad are coming in for several doctors appointments in Austin. Mom's going to be able to go with me on Thursday to have Addison's 3 month portraits done. I've had quite (a bit too much) fun shopping for picture outfits. In the process, I have discovered my love for baby Gap. I would post a link to the dresses I found for her, but they weren't available online. One of the dresses may have to wait for her six month pictures, so there will be pictures of it soon enough.

Addison is getting so BIG! In a 6-9 month outfit, taken this morning!