Tuesday, May 28, 2013

Memorial Day


We had such a great Memorial Day! Adam was off work and Grayson was home. 
The boys and Adam played football in the backyard while Adam grilles burgers. Addie had fun watching the boys through the sliding glass door. 



Our spread.


Katy waiting patiently for Addie to drop some food! 



Big burger for a big boy !


Sad that we wouldn't let him have more ranch dressing for his carrots.



Cheese! 

Thursday, May 23, 2013

Jack graduates Pre-K!

Jack's last day of pre-k came the day after Addie's birthday. So it was a busy week. Cliche but true -- it really does seem like yesterday we were taking his first day of pre-k pictures. Wow. What a crazy fast year this has been. 



Traditional front door pic!


He had speech that morning, so we were walking in by ourselves.  Photo op!


Jack and his sweet teacher Ms. Lauren!



Meanwhile, Grayson had hit his hand at his dad's house and complained of it hurting. So his dad took him into urgent care and while the urgent care doc did not think it was broken, the radiologist called the next morning and said oh nope, it is broken. So we had to follow up with an ortho surgeon. After I had to bite my lip to keep a straight face when he told me his pinkies weren't broken, they were crooked because of a hereditary condition called Clinodactyly. I stopped him mid sentence and was like um we know he has crooked pinkies. His dad does too. That's not why we are here. So upon further investigation, he said oh yeah... here's a little break right there. :)  Thankfully it's not bad enough for a cast. Just an OT splint guard to protect it from more damage while it's healing.
My three babies all ready for Jack's graduation.





Stopping to check out the grass. (And this folks is why toddler size dresses still need to come with diaper covers!)


Officially graduated from Pre-K! Congrats Jackson!! We are so proud of you!

Tuesday, May 21, 2013

Happy birthday Addie Lea!

Our baby girl is TWO!!!! I can't believe it! What a fast and crazy ride it has been these past two years! Addie completes our family in just the way we needed and didn't even know it!! Here's to many more years baby girl! Love you THIS much!! 



At 8:30am, Addie turned two officially. So I had to snap a shot of what she was doing right at that moment. And inspired by the 12 on 12 pic trend, I decided to take a picture of her on every hour on the half hour of her throughout the day to document her 2nd birthday! It was such a fun project and I enen got Adam on board when I was running errands and she stayed at home with him. 
What she was doing the minute she turned 2. Saying good morning to Katy and Chuy and holding my iPad. Pretty much her three favorite things in the world. Pretty great way to turn 2!
Calling "MeMaw"
Mom snuggles after breakfast
Upset she couldn't get in the "bathtub" with Jack. Meltdowns mean ready for nap!
Nap time! Typical Addie sleep position.
Helping Daddy make her birthday cupcakes. She had to taste test and approve the frosting.
Hanging out with Daddy while Mom took Jack to his graduation practice and while Mom got a much needed hair cut!
3:30pm MeMaw arrived!! Walking outside to greet her!
Looking at Mom's Project Life album with MeMaw
Emptying the contents of Aunt Missy's purse
Getting dressed for her party
Birthday cupcake covered!
One last MeMaw snuggle before bed time! 12 hours of birthday fun!


My sweet two year old!!! 


Silly girl - ready to eat dinner!


Pretty fire!!  She was mesmerized.


Getting down to cupcake eating business!

Monday, May 13, 2013

May Madness

May has been crazy!! 


Melissa and I took the kids out for burgers the first Friday in May.

We stopped by Carters afterwards and bought Addie some cool new sunshades! She calls glasses 'garros'. Who knows why. But she was excited to have her own pair of garros. Do you think she wore her garros when she had a prescription pair? Of course not.

We hit JoAnn's up afterwards for some party supplies for Addie's upcoming birthday. She managed to grab a tube of white acrylic paint and get it open. Naturally!


The next morning I woke up sick. So sick. I think it was food poisoning or maybe the norovirus but I was down for the count. Thankfully Melissa was able to come over and help with the kids and then Adam was off the next two days. I was down. For like a week. It was horrible! And when Momma is down, no pictures are taken! So May is a little light on the pictures. 


Eye follow up with Dr. R on May 10th. She is happy that we have confirmed the sixth nerve palsy diagnosis but now that the Botox is wearing off we are starting to see the eye start to cross back in. And it is turning up some now too. So we have added a new diagnosis of fourth nerve palsy on top of the sixth nerve palsy. Awesome. We are going to try chemical patching for three more months than most likely looking at surgery in the late summer, early fall. Dr. R did say that because the Botox did work partially, the procedure should be a lot easier. She can go in and tighten the muscles instead of removing, cutting, and reattaching them.  

While we waited for Dr. R to come in, Jack helped Addie put her shoe back on all on his own. Be still my heart, Prince Charming!

 
Later that afternoon, Melissa, Jack, Addie and I went in search of more birthday party supplies. JoAnn's didn't have what I was after.  Addie walked into Hobby Lobby like a big girl. (Are you seeing a craft store trend here? ) After the paint issue at JoAnn's we are trying to let her ride in the cart more and the stroller less. Less things within arms reach.  So she is walking into places more now. Such a big girl!

Jack woke up sick the next morning. Stomach bug. It was weeks after mine so I really don't know if it was the same thing or not. He was curled up on the couch watching cartoons and Addie crawled up with him and snuggled. I love the bond I see growing between these two!



Friday, May 3, 2013

What's Been Going On!

It's been a while, dear Blog. I am so sorry for that. We were offline for a few weeks for technical reasons and now we are back. I hope. I'll admit -- with less medical things going on, there's just not as much blog material to share. I may have to start blogging about cooking recipes and Project Life pages. Something. Anything. And can I say how awesome it is that I am having to search out blog topics?! That means that Miss Addie is rocking along. And that she is!!

On the medical front -- Addie got up to her full dose of her seizure med on February 19th. March 9th, she had another seizure. Same situation as last time. She fell asleep in her car seat early after having a restless night of sleep. So we have a pattern. That's a silver lining. This seizure was different. It was less involved. Her eyes were jerking and she threw up a few times but her arms and legs were not involved. Another pattern, another data point. Silver lining #2. I didn't know if I was supposed to administer her rescue meds for this type of seizure.  A complex partial seizure without convulsions. (Now that we know more, we aren't even sure if she has ever had a Tonic Clonic aka gran mal seizure before or if she just has really involved Complex Partials. Thankfully it doesn't make a difference with the medicine they put her on) So I called medlink and while I waited for the return call,  I went ahead and gave diastat at 10 mins. It stopped in time, so we didn't have to call 911 this time. After observing her for quite some time, I put her back in her car seat, with my sister riding in the back seat with her to watch her closely and we drove home to let her sleep. She only slept about 2 hrs, so the postictal stage was shorter with this seizure as well. Silver lining #3. So all good things to know and to work with going forward with her seizure plan. I talked to the doctor on call about what next... and she agreed that it was a great sign that her seizures seem to be getting less involved each time. A wonderful sign the medicine is doing it's job, at least partially. So she ordered a blood draw while we were in for the Botox to check her med levels.

Fast forward a week after Botox, and her levels were too low. 2.2 when the range should be 3.2-14. So yay! We had some room to increase her! With a bunch of logistically stuff I will spare you... we finally got her worked up to 100mg a day. She had started at 50... and there was some confusion as to whether she should've been started at 100 and there had been an error or if the doctor had started out low on purpose to give us room to bump up and not over medicate unnecessarily. Who knows.  In the end, we are up to 100 mg a day as of April 13th. She chews her 'bites' in the morning and evening like a champ. And momma is staying on top of it thanks to her handy dandy iPhone alarm.

Fast forward again, Addie had a cold last week. Ran a fever of 102 and again had a restless night of sleep. She also went to bed an hour and half earlier than normal and slept 2 hrs later the next morning. That was 15.5 hrs going between meds, when at most she goes 13. About two hours after she was awake, I saw her chewing on her left side only. I thought she had something in her mouth but upon investigation, couldn't find anything. She kept doing it, over and over. The hairs on the back of my momma neck stood up... and I thought -- was this a seizure? A simple partial as opposed to a complex partial. Basically less involved and they maintain consciousness through it. After consulting a few trusted hydro moms, I called the neuro nurse on call and she said "yep, sounds like a baby breakthrough seizure." So we know why -- a virus, fever, and going longer between doses than ideal. And it's another amazing data point. Every one so far has gotten less involved. I am loving this pattern we are seeing and pray it continues. Once she woke up from her nap, she did it a few more times. Chewing on her left side only, staring off a little zoned. She'd still play with her toys, or whatever but would just absent mindedly chew. After about 5pm she stopped and I haven't seen her do it since. Dr. K returned our call the next day (having been out of the office the day it happened) and said not to change anything. I know it may sound strange to be excited over a seizure, but the progression or rather regression of the seizure activity that we have seen after starting the medicine has been amazing. I am so cautiously optimistic about this! And thankful !! Of course, we still watch her like a hawk all.the.time. and carry her rescue meds everywhere. But we are just a tad hopeful !!

In other medical news, Addie is now the proud owner of a new AFO for her left foot. She is weaker on her left side because of her hemiparesis. The current theory is that her hemi was from her brain bleeds after she was born and not related to hydrocephalus per se.  She had an SMO (another type of foot orthotic)  but after we saw Dr. N in April, she decided that it's time for more intervention. Addie is hyperextending her knee when she walks. Her knee pops because her hamstring isn't strong enough to stop the momentum of the movement. So she has a guard up the back of her calf to stop that and the brace is hinged to keep her ankle stretched as she walks.  We had the fitting last week, and her awesome PT went with us to make sure we got everything done she wanted addressed. In the middle of the fitting, the orthotics tech was sitting in front of Addie, wrapping her leg with the mold cast, and Addie reached out and grabbed her by both ears and planted a wet smacky kiss on her lips. I was both amused and horrified. I think the tech felt the exact same way.

Last week, we were able to go pick up the brace. We were there for about an hour trying to get the fitting just right. I was supposed to bring shoes with me that would work and, naturally, as we were late leaving that morning I couldn't find her other tennis shoe. I looked everywhere. I finally had to give up and bring her crocs with me so she'd have something that she could walk in her brace in. Most likely the tennis shoes would be too small but I was determined to try before buying new shoes. After we got back, Addie went down for a nap and I set out to find that stinking shoe. I looked in toy boxes, in cabinets, in bookshelves, under beds, under couches, etc etc. I finally found it. In the storage drawer under the oven. Oh Addie.

After finding the shoe, I had to make some major modifications aka cut the heck out of the back of it to get her brace in the shoe. I had already cut the shoe before, so I knew the shoe was already destroyed. Nothing to lose. I got the brace in it, by golly. But it wasn't as good of a fit as it should've been so.... we set out for new shoes last night. After giving the boys the whole, best behavior speech, we were successful! She scored some snazzy new tennis shoes to go over them and they are so easy to get on!! After the debacle at Nordstroms last time, I was dreading the fitting. But we found a new place -- locally owned here in Austin -- and the guy got it right on the first pair! He rocked my socks and Addie's right off ! Customers for life!






Addie is trucking along in all other areas. We see her eye doc next week to follow up about the Botox. Her eyes looks great. They are still a little misaligned vertically now but so much better horizontally than they were so I am very curious to hear what Dr. R has to say next week. She has her 2 yr well check (OMG!!!!) the week after next, and then after her second birthday (May 20th) we have her follow up with Dr. G, her neurosurgeon. He hasn't seen her in six months so we are looking forward to that appointment. A quick MRI before hand and hopefully we are released for a full year! That is what I have heard -- once his patients are two, if they are stable vent wise, he wants one year follow ups. Not gonna lie, I can't believe we are here. That she is nearly two and that there is a possibility of going a full year without seeing her neurosurgeon. There will be much celebrating in our house if we get to that point.

Grayson is winding down fourth grade. He just had market day where we made 76 confetti eggs for him to sell. All to raise money for his school field trip. I never want to see another confetti egg as long as I live.


Jackson is nearly done with pre-k. Only about three weeks to go. He and I just made a police car out of a cardboard box for his school's transportation parade. Fun time.


We had a great day last weekend at the Play for All Abilities Park. Addie got to swing and go down a slide for the first time. The park is amazing. The boys loved it too but it is made so all children can use it. I think it'll be a favorite spot of ours over the summer, and the fact that they are building a Torchy's Tacos right around the corner from it -- SCORE!








We are eagerly looking foward to summer. We have some fun trips planned to visit friends and family and are scheduling down time as well! I know it'll go by fast so I plan to soak up as much as I can. I think I'm more excited about school letting out than the boys are!! C'mon summer!!!