Thursday, December 27, 2012

Merry Christmas

Our family of five on Christmas Eve

My extended family - all 17 of us.

Addie crawling over to MeMaw as she read the story of Christ's birth from the family bible.

Helping Aunt Missy hand out gifts

Cousin Jared showing her how to use her new popper pusher toy

Trying to get her to sit still in front of the tree for a pic....  practically impossible.

My 3 babies!

Trying on Uncle Jay's glasses

Checking out MeMaw's goodies

Finally hung my camera on the tree to entice her to stand still.


The wonderment of a child 


Ready for bed at 8am. "Goodnight Bubba."

Jack getting cookies for Santa

Addie up at midnight and ready to play s'more.

Santa gifts plus gifts from Adam's family - all ready for the kids to wake up.

"Baybay!"

Happy Jack

A very Merry Christmas morning

Playing with my camera instead of toys

Stockings for all 8 grandkids. My 3 are the last 3. :)


Merry Christmas!

Monday, December 17, 2012

Italy v. Holland

There aren't many special needs parents out there that haven't read or at least heard about Holland. Holland is the place we all end up when we get off the plane... into the world of a child with special needs, when we thought we were traveling to Italy. We all thought we were going to  get a typical child... and instead we get a child that is different than what we expected. We get a child that is equally wonderful but not what we had prepared for... or researched. And the poem (though really not a poem per se) talks about how we eventually will get used to Holland but will always wonder what would have happened if we, indeed, landed in Italy. (read a copy if you are interested in more than my awkwardly paraphrased version here )

I, too, read this essay when pregnant with Addie. I have since developed a soft spot for tulips and quit reading any of the travel guides for a typical child. But a funny thing happened on the way to Holland -- at least, for me.

I started to realize that none of my children are Italy. Yes, I was blessed with two healthy children. Yes, I had the fortune to deliver my boys and have them room in. I didn't have to prepare for separation from them in their first first days of life, I didn't have to use a mechanical cow I called Bessie to provide them with breast milk for nourishment. I didn't have to sign consent for them to have brain surgery on their first day of life. I didn't have to leave them at the hospital when I was released to go home. I am not saying that I was not blessed to have two "typical" birth experiences, because I was. And it is my sincere hope that every parent would experience that part of  'Italy' at some point. 

But to say that I have ended up in this magical place that I had planned for my whole life, that it's turned out exactly like what I had meticulously planned... well that would be a lie. 

You see, no child is alike. No parent's destination is the same. No one can prepare for what their children will become. Yes, some children may follow this mythical ideal path of perfect behavior, attendance, grades, hair, etc. They may marry the quarterback of the college football team on their way to Harvard Med.  But to say that every child... every child ends up in either one of two places...
that's just not how it works. 


I have three very different children. And yes one of them is considered special needs. But I wouldn't put the other two firmly in the Italy category. On the flip side, I hesitate to put Addie in the Holland category either. Yes, she has hydrocephalus and seizures, and yes she has more doctor's appointments than most kids, but she's developmentally typical for her age. Could she develop more delays as she ages? Of course... but what child couldn't?

Are the kids that suffer TBI when they are 3 years old from being run over by a car firmly in the Holland category? Not in my eyes, they aren't. Are the kids that are in general education curriculum but have a diagnosis of ADD or speech issues only firmly in Italy?

No.

Why do we try to lump children into categories? 

My children, I have decided, are from France, Germany and Norway. And that's ok.

And maybe those aren't places I set out to go. Maybe those aren't places anyone sets out to go. Maybe there are people that want to go to Italy and actually do arrive in Italy, and that's ok. Maybe there are people that didn't plan where they were going, so they would know only when they arrived where they were. 

I guess my point is this - no child, no matter their diagnosis, is the same. Every newly diagnosed hydro mom I talk to (and yes I did the same thing) wants to know what my child will be like. And there are no answers to that. No hydro child is the same. But guess what? NO CHILD is the same. I couldn't have told myself at 23 years old what Grayson would be like, and I couldn't have known or predicted Jack's abilities either. 

None of us know what or where we are going to end up. And maybe we should stop trying to predict it. Maybe we should just enjoy the journey. And we'll know where we end up once we get there.

Life is short. Children are precious. Love is the most important thing. 

Holland v Italy?

Does it really matter?

I don't think there are many parents out there, at least not one that would bother to contemplate these things in the first place, that would say it matters. We LOVE our children. All of them. I love my special needs child as much as I love my gifted child. I love my child that has speech issues as much as my child that has ADD. I love them. They are mine. I didn't go to Italy... I didn't go to Holland. I didn't go anywhere but where I was meant to be. And we should all take comfort in that. 

Thursday, December 13, 2012

Appointments and Seizures, oh my!

I'm happy to say Addie had her last (scheduled) doctors appointment of 2012 yesterday. We've seen the eye doc twice, neurologist, neurosurgeon, ent, physical rehab and pediatrician once and the orthotist twice all since October. Whew. Glad to be done for a while.

The pediatrician was thrilled with Miss Addie. She said she's the most amazing (medically) thing she's ever seen. That she is just like a typical 18 mth old. Praise God! I knew she was doing well but hearing that from our pedi was awesome!!

Now if we can just figure out these pesky things called seizures. :( Addie had another seizure on Friday the 7th. Just like the last one. In her sleep, before awakening. I heard her through the baby monitor and asked Jack to go talk to her until I could come get her. He came back and said "mom, somethings wrong with Addie. She's going sniff sniff sniff sniff," I immediately knew what was wrong and ran into her room. Saw her convulsing and went for the diastat pen. I knew based on how she had been discovered that it had already been 3 mins so I immediately picked her up and put her on her changing table. I prepared the pen and administered the gel. Adam was home, thankfully, and he had hung up on his conference call and was standing by her side, talking to her. I left them to go find a cell phone to time how long the diastat took to work. We had instructions from neuro that if it lasted longer than 3 mins to call an ambulance. Thank God it was over almost before I could start the stop watch on the phone. We let her lay on her changing table. She was moaning and moving a lot more than she did the first time. Adam lifted her on the changing pad and carried her into our room. I sat with her on our bed while Adam made breakfast. I called Neuro and left a message with the nurse and then texted pt to cancel, called my mom and sister. All never leaving her side.

Jack was awesome. He told me he had tried to rub her back when he found her but it didn't help. He's such an awesome big brother and has wonderful instincts to come tell me when something is wrong. Now that we know Addie officially has a seizure disorder, I won't be putting Jack in the position of finding her in bed seizing again. So far, that is her pattern.

Addie slept for quite a while but was fighting the meds a lot sooner than she did in Orlando. From what I can tell, she had a lot shorter seizure and because she didn't have to have double doses of meds, it didn't seem to knock her for as big of a loop. She started trying to roll over to her belly a lot sooner, which made me smile. That's when I know she's sleeping more than knocked out.

We are trying our best to process this new development. I really thought her seizure in Disney was a vacation fluke. But it's happened again, at home, in our normal routine, not out in heat and humidity, and I've been making sure she's been getting plenty of sleep. The only thing I can find that connects the two events is the lack of drinking. We put Addie back on the bottle after her seizure in September. And she just weaned herself again last week. Right before her seizure. She just doesn't drink as much out of a sippy or out of a cup as she does from a bottle. I can't help but wonder if this is connected. So time (hopefully) will tell. I pray that she's goes even longer before the next one. We are taking precautions on our end to better hear her in the night and see her to check on her. We have filled more diastat pens to be ready. She has a follow up neuro appt in January to come up with a seizure plan.

She's back to her cute self and we thank God every day that she wakes up smiling. She has several new words - is probably up to 25 now. At her pedi visit yesterday she weighed 31 lbs and was 34 1/2 inches long. Crazy!!! Her head circ is up to 53 cm.

We've been busy with holidays and Christmas shopping! Life goes on. Hopefully my next update will be more fun filled!!

Blessings~
Aimee

Wednesday, November 21, 2012

Medical Catch up

November has been a busy one medically speaking! Miss Addison turned 18 months old yesterday!! I can't believe it! She's officially closer to 2 than 1. AHHHH!!! Time is speeding along. We are so blessed that we have a healthy 18 month old little girl walking around getting.into.everything!


Addie had difficulty sucking the extra thick milkshake through the straw, so she just removed the lid and stuck her face in!! 18 months old !



















Because Addie is now 18 months old, this means she was due for a bunch of six month follow up from all her one year appointments.

Over the last six weeks ish, Addie has seen her physical rehab doctor (think a PT but with a MD), her ophthalmologist at least three times in the last six weeks, her neurologist for a follow up EEG from her seizure in September, her neurosurgeon and an orthopedic tech. She still has another ophthalmologist appointment, ENT appointment and an 18 month well baby appointment to go.
Getting fitted for her brace

Physical rehab doc that we saw back at the spasticity clinic (post here) in April was very pleased with her progress and thrilled to see her walking around. She did want to get Addie fitted with an SMO brace for just her weaker foot. Her apparent leg length discrepancy seemed to have increased so Addie needs a slight lift on her left leg (1cm) and since we were doing the lift, the doc felt we might as well try to help her not crunch her toes when she walks and stop the slight pronating. So we followed up with an ortho tech, had that fitted and got it in last week. 

We are still working our way up to wearing it for 4-6 hr stretches. We ended up buying her two separate pairs of shoes to wear with the brace because the braced foot is much larger than her unbraced foot. 3 shoe sizes different. So we bought two pairs of knock off crocs and she wears those with her brace. She doesn't have to wear the brace all the time, it's only for when she's walking. So she wears it at home and then when we go out she just wears her regular shoes because she's in her stroller or car seat the majority of the time.  Aunt Missy (thanks Aunt Missy!) bought Addie a pair of wee squeaks to wear when we are out. She had just gotten her TOMS in August and they were 5s. Her wee squeaks are 8s! Holy big foot batman! She gets it honest but man that's a lot of foot growth !!


Exploring Dr. R's office (the eye doc) 
Ophthalmology is still not quite sure what is going on with Addie's eyes. We have a new diagnose of sixth nerve palsy but her NSG isn't quite convinced of that dx. So we are still waiting and seeing. We are still trying to get her to wear her glasses and we have switched from patching with an eye patch (that she just rips off) to chemical patching by dilating her good eye.



Neurology was an adventure! They ordered an EEG to follow up from the seizure in Orlando. It was a slightly sleep deprived (she had to miss her morning nap) one and I got to hold her onto the bed during the 20 mins test. She was not happy. Momma and baby were tired! But we made it through it. I think she's the cutest EEG mummy head ever!

Dr. K came in shortly after and told us the EEG was normal. Normal! PTL! The EEG in Orlando had shown some slowing on the left side  but Dr. K felt it was a result of the seizure, not her normal baseline. Because her EEG was normal, he doesn't want to start her on preventative seizure meds. He said to carry the diastat everywhere, which we do, and that obviously the biggest concern was the length of time the seizure lasted. We don't know if/when it will happen again so we will always have to be prepared. We discussed the possible triggers and he concurs that it was most likely a vacation perfect storm and that we are doing the best thing by keeping her hydrated and rested and being super aware of her schedule and routine now. It's a balance of real life and keeping Addie safe. But so far, so good, thank the Lord! Dr. K doesn't want to see us again... until we need him. Praying we won't need him for a long, long time.

Dr. George's (neurosurgeon) appointment went well. Addie hadn't seen him since May, so a lot of changes and growing for our girl since then. Dr. George was happy to see her and I think she was happy to see him. Her scans looked good, for Addie, and we were sent on our way with instructions for a six month follow up. See here for pictures from her appt with George.  Which I scheduled for 4 days before she turns 2. Which is crazy to think about!




Miss Addie has her six month eval with ECI next week and we are switching her back to PT with ECI instead of with the private clinic we were with. There was an issue with insurance and the way I thought it was going to be billed v. the way it was actually billed so we had to make the switch back. We have enough medical bills we can't avoid... I felt like it was pretty logical to avoid the ones we can avoid. We enjoyed our time at the clinic based PT but honestly it was a bit too much to fit in with her nap schedule. It was also less flexible to reschedule a visit when we had a stomach bug or the PT herself was ill. So I'm happy with our experiment of pulling her into clinic based but am relieved to be going back to ECI.

Thursday, November 15, 2012

Gratitude

Today I sat in an exam room at a doctor's appointment, waiting for the doctor to knock gently on the door and exam my child. I sat there and watched my almost 18 month old daughter walk around the room, getting into anything and everything she could. She tried to take the garbage bag off the trash can, and tried to unplug the computer underneath the desk. She tried to crawl up into the chair and after a little bit of help, she stood up in the chair, and looked out the window at the cars driving by below. 

This may sound like an average run of the mill doctor's appointment to many parents, but to me it was a milestone. A moment I will not likely forget for the rest of my life. 

I was sitting back in THAT room. The room that we first talked to a pediatric neurosurgeon about my yet to be born daughter's brain or lack thereof. I sat in the SAME chair that I had sat in that day, 33 wks pregnant and scared to death. I looked at the same doctor, sitting on the same stool, that had told me we wouldn't know what hydrocephalus meant for our child for some time coming. That he was our GPS navigation system and we were embarking on a journey. A journey filled with unknowns and possible bumps in the road but that it was his job to guide us along the way. That he was like a family relative that you (hopefully) only see at a reunion once a year but that if you need them more often, he'd be there. 

I sat in that same room TODAY and watched my nearly 18 month old daughter walk around the room. The.same.room. It was a surreal, poignant moment. Watching her walk around, playing in the very room that we sat down and discussed her condition not so long ago. That we discussed what chances she had to walk, talk, eat or even breathe. 

After her neurosurgeon walked in, my daughter walked over to the man that had saved her life, not once but twice, and climbed into his lap. This is not her normal behavior.  She doesn't climb into her neurologist's lap, or ophthalmologist or even her pediatrician's. But this man... her neurosurgeon, she remembers

She sat in his lap, playing with his beard and they had a quiet moment. And I sat back and watched. Thankful... that I am back in that room with a healthy, beautiful little girl that amazes me every day. Thankful that I am on this side of the journey and that we know a little more where we are going. Thankful for Dr. George that he has navigated us this far and will continue to do so for years to come. Thankful that I am able to witness a miracle every single day outside of THAT room. Thankful to be the mom of my baby girl. 





Friday, October 26, 2012

Disney Trip- Flying home

Our last morning was a little rushed. We had to be on the bus to the airport by 9:30am and we wanted to let Addie sleep in as long as we could after her seizure ordeal, so we were packing up in a rush. We had packed up as much as we could the night before but there's inevitably little things here and there you can't pack til the last minute. We made our luggage call and sent out luggage away with the sky caps they have on site at the hotel, which was awesome. Cus we really didn't want to schlep all our suitcases on the bus and through the airport.


We stopped off for a few last pictures - the boys were especially excited to check out the Cars building. One thing we didn't have time to do this trip was explore the other areas of the resort. So we took a quick look around the Cars section on our way to the bus.



Addie in her University of Texas inspired dress - made by Aunt Missy - on the way to the bus. 



Grayson got a new hat with his souvenir money from Memaw. He looks so old in this picture!



Jack and Jackie waiting for the bus.



A photo tradition for us is to always take a picture in front of this fountain in the airport right before we go through security to leave. 



Addie squeaked around the airport in her Wee Squeaks. She enjoyed looking out the big windows.



On our layover in Houston, we ate at Pappas Burgers and Jack ordered a hot dog. It was as big as he is!

The ride home was bittersweet. Our vacation had been both magical and terrifying. I admit to holding my breath the whole way home. Flying on an airplane with a child that just had her first ever seizure was scary. Thank God we got home safely and Addie didn't have a seizure the whole day. 

We arrived home and went our separate ways. It was good to be home. 



Monday, October 22, 2012

Disney Trip - DHS Day

After our wonderful night spending together as a family, eating at 'Ohana and watching football back at the room, we decided we would try to go into the park for just part of the day. It was still hot, but we had a game plan. We let Addie sleep in as long as she could and then we would head straight from the room to the bus to our lunch reservation, walking along the shops to keep Addie in the A/C.  After lunch, we rode a few rides, taking our time so we could walk inside more than outside. We bought Addie a mister fan and made sure she was drinking all the time. We had a plan and we were all watching her like a hawk!

One last park bus line


The boys got tired of me taking pictures but I felt like I had to make up for lost time since it was our last day


Waiting for our name to be called at 50s Prime Time Cafe 


A photo op with the Incredibles


Posing in front of the Roger Rabbit Car


Addie and I sitting on the Roger Rabbit car- I have several pictures of me sitting on this car over the years.


We rode a few rides but saved the best for last... Tower of Terror


This was Jack's first time on this ride.... he was shaking the entire time and then when he got off said it was the best ride ever!


One last shot of our family of five as we were leaving the park for the last time 


On the bus on the way back to the room. The thing we noticed that was affected the most by Addie's seizure was her eye alignment. You can really see it in this picture.


After we got back to the room we decided to get a big pizza from the food court and go back to the room and watch Monday night football! Addie escaped out the hotel room door and was walking up and down the hallway.


We watched football, ate pizza and started the packing up process. We had a 9am appt with bell services to catch our bus back to the airport. We turned in early and let Addie sleep as much as she could because she had to be up in time to make the plane!

Sunday, October 14, 2012

Disney Trip - 'Ohana means Family

We had a reservation on Friday night for 'Ohana, a very popular restaurant at the Polynesian Resort on Disney property. I had booked it 6 months in advance as they fill up quickly, especially over weekends. We obviously didn't make our Friday reservation as we were at the hospital with Addie. I called Disney dining reservations and explained what had happened. They got us back in Sunday evening at 5pm. Early but we were in! YAY Disney customer service. We were still getting phone calls daily from the housekeeping manager to check on how Addie was doing. It was very sweet and definitely above and beyond the call of duty. 

Sunday morning came and  we slept in  as late as Addie did. She was still recovering from her seizure and I'm guessing from the meds they gave her to stop the seizure so she was sleeping more than her normal, which in my opinion, was a good thing. We decided not to go into a park that day to let Addie take it as easy as possible. So Adam graciously agreed to stay at the room with the kids while Mom, Melissa and I went shopping. This allowed Addie to nap on and off as she needed and the boys some down time on the iPads and Adam was able to watch Sunday football. The boys were more than happy to hang out in our cool Nemo themed room and play on MeMaw's or Aunt Missy's iPad (in addition to the one we brought). And I was in need of some retail therapy! 

Mom, Melissa and I headed via bus to Downtown Disney and spent about 3 hours shopping. It was wonderful !! Of course, Adam and I were texting back and forth continuously so I could ease my mind about how Addison was doing. Thankfully, she slept the whole 3 hrs we were gone.  

Cute little dressing room in one of the shops at Downtown Disney.



After we got back from Downtown Disney, we got dressed for dinner. We had to leave fairly early as we had to take a bus to Magic Kingdom and then catch the monorail over to Polynesian Resort. 


Addie saying hi as we waited for the bus. 
Mom and the boys looking down at the waterfall in the lobby of the Poly.

Melissa and Jack at dinner

Mom and my two boys

Mom trying Melissa's lapu lapu. She wasn't a fan.

The boys doing the coconut races at 'Ohana

Addie playing with one of the (cooled off) hot towels they bring out to de-sticky your fingers

"cheese!"

Clapping about something

My family of five! 

The best pic of the 3 of my kids 

Addie wanted down!

My boys!

Mom and Addie

One last pic of the beautiful Polynesian... my favorite Disney resort

After dinner we headed back to our hotel, via bus to Disney Hollywood Studios. Thankfully the same bus that came from Poly switched to an Art of Animation resort and we just stayed on the same bus! Mom took the boys to play in the arcade, I gave Addie a bath and we turned in fairly early, watching Sunday night football while Addie slept between us. It was a much needed evening ! I'm so glad we were able to get back into 'Ohana! We all needed a little 'family'.