Two

Dear Aly,

Happy 2nd Birthday! What a year its been! You've done so much in the last 12 months. You got glasses, had an EEG, went off your seizure meds, had eye muscle surgery, learned to walk, went to the zoo and Lagoon for the first time,  you graduated from Physical therapy and Occupational therapy, learned to kick and throw a ball, rode a merry-go-round and more.

In a year you have come so far. You have worked so hard at meeting milestones and you are doing so well at getting caught up. Your Dad and I have been encouraging and helping you along the way, but so much of your success has just been due to your strength and determination. You may be stubborn and independent, but in some cases its a good thing.

Now we have a new focus, getting you talking. You have shown yourself to be determined and tough. We are ready to tackle this and help you in all the ways we can. It will be hard, and it will be frustrating, but I know you can do it.

Happy birthday my sweet girl. You are such a joy to be around. You are a smiley happy girl and are so much fun to be around. You have so many favorites and you love so many things. You love to read books, and toys, and animals. You will eat anything and love food. You love to spin and dance. You love watching Sprout and your favorite shows are Wibbly Pig and The Chica Show. You love to color and draw. You love baths now, and splashing and kicking in the water. You love the outdoors, going for walks and digging in the dirt. You love waving at people and talking to the cats and exploring everything around you.

I love your sweetness and the little personality that you've developed. I love everything you are. Most of all, I love being your mom.I hope you have an amazing 2nd birthday. I can't wait to see what you do next.

All my love,

Mom

Little Successes

"Hooray for little successes, they lead to big ones!"
I remember this was one of the best things someone said to me when Aly was in the hospital.
We celebrated every little accomplishment, when she was taken off every machine, when she moved from the PICU to the infant floor and so on. Aly's recovery has been measured in little successes. Every little thing she does, is something that is part of the process toward moving toward big successes. She walks, she draws, she kicks a ball, she can do her shape sorter, she hugs her puppy. She points at her Mom and Dad, she understands basic commands. Every little success is worth praise. She works hard for these accomplishments. I feel like most parents don't realize what it's like when nothing comes easy for your child.

I try not to compare my child to other kids, but it happens. It happens a lot. There's a lot of mental math going on. "Oh little Billy was 11 months when he started taking/walking/doing complex algebra etc." I hate to say it, but it hurts. It's like a little stab in the gut every time I hear about a baby half Aly's age doing something she can't do yet. I feel like I am forever going to feel the need to justify Aly's delays to the world. Like I am going to have to go around with "BRAIN DAMAGE" stamped on her forehead. I just want her to try and to feel good about what she can do, and not feel bad about what she can't do, or what she can't do well.

So no, Aly is not talking. She's not jumping, she's not doing gymnastics or singing songs or reading (thanks ABC Mouse for making people think its normal for a 2 year old to be reading). What she is doing is more important. She loves to color, she loves to go outside, she loves to eat, she loves to give mom and dad a bite of food, she pretends (that is something she is actually advanced on, so there's that) she likes to pet kitties, and likes to dance to Chica or Daniel Tiger.

Yesterday, I picked her up and she gave me a hug. That was like, post on Facebook milestone worthy in my eyes. It was amazing. Another little success.

She is on the way to normal, she may never get there, but she is on the way. She has graduated from Physical Therapy and is in the range of normal for the first time in a year. When we got the letter from her therapist summarizing her accomplishments, we were thrilled. I'm hoping we can slowly reduce her therapy and doctor's visits, until she is is like a regular, normal kid. Most parents don't want normal, they want better or advanced. I want normal, I want average, I want easy.


GO ALY!

One Year Later

One year ago Aly was sent to the hospital due to seizures and then later it was discovered that her brain was dangerously swollen. The next ten days were the worst days of my life. A year later, and thinking about certain parts of it still make me upset, like physically ill. I still get triggered by certain things. I remember so much of it so clearly, but at the time it all seemed to blend together.

Since she left the hospital she has done very well. She has not had a seizure since July. She has been off her seizure medicine since January. She went through an illness with a high fever and never had a reaction. She went under anesthesia in March for her eye surgery and did just fine with it. Her neurologist had originally prescribed a "rescue medicine" in case she had another seizure, but she now doesn't think its necessary. Aly will always be more susceptible to seizures, but we'll deal with them if they come.

I'm not gonna lie, I do worry that the seizures will come back and that we'll be right back where we started. I do worry about Aly probably more than the average mother. We may spoil her a little more, we may go easier on her than other kids. Hopefully we'll relax as she stays healthy and out of the hospital. :)

During the time Aly was sick, I waffled between wanting to document what was happening in pictures, and not wanting any physical reminder of how she looked. She did not look like herself, she wasn't opening her eyes and she was really puffy from medicine they had her on. Yet, she actually was losing weight. However, there is one picture of her at her worst that we have, and I am glad it exists if only to show what she bounced back from.

Aly with breathing tube and EEG hooked up

So, I'm hoping this next year can be about healing and hopefully we can stay out of the hospital. I was excited when we went through May and June without visiting Primary's once. Our neurologist wants to do another MRI next year, and I'm fine with that. Aly is still in Early Intervention, but she is taking a break from her other therapies. She will go back in a month or two. She also will need to start Speech Therapy at some point unless she wakes up talking (who knows, it could happen!)

In the past year I have thought a lot about life, my beliefs, and what it all means to me. Someday I'd like to make a post putting it all into words, but for now, I just want to be happy and once again thank some people who made the darkest, hardest time in my life better. You really learn who loves you in a time like this. People came out of everywhere to show their love and support for us. Strangers were offering assistance, praying and thinking of us. I have never known so much love. 

Aly is the most loved baby I have ever seen. She is so sweet and happy and loving. She will smile at anyone. Everyone loves her. I have never gone to a store without at least one person stopping to tell us how cute she is. All she's been through has not changed her. Every day I think about how lucky I am to be her Mom, and how lucky we are to still have her with us. 

GO ALY!

18 Months

At 18 months Aly is walking almost all the time. I thought she would just get up and walk one day but its kind of a gradual process. She is doing really well and getting so confident and faster all the time. She has started babbling a lot, no real words but plenty of noise.

She loves to point at body parts, especially belly buttons, noses and mouths. She can pet her kitty friends, but is scared of most dogs. She can clap, wave and we are teaching her patty cake.

She has stopped going to OT and we are hoping once she walks full time she can stop PT. She still has Early Intervention with her therapist at least once a month though.

She had her follow-up with her eye doctor on the 17th and he thought she looked great. She will still be seen by the doctor every 4 months to monitor her eyes and make sure they stay straight. She is starting to grow out of her glasses. She still wears 12 months clothes, but they are getting tight.

She loves Daniel Tiger's Neighborhood and Sesame Street. She will eat half of anything you have and loves everything. She is well behaved in public, loves attention, but is starting to get some stranger anxiety. She loves to go outside and pick up rocks or sticks and also loves wind in her face.

She loves to play with Mommy and Daddy's phones, and she loves to pull stuff off of tables, and she loves to pull down games or dvds from the racks. She will try to grab stuff off of shelves at stores as well.

She is a very happy little girl. Always smiling, laughing and so interested in the world. She can be a bit of a troublemaker with how inquisitive she is, and she will keep you on your toes! If there is something that can be thrown, dropped or pulled down, she will find it.She has grown so much in her short life and she has so much more to learn and discover. Everyday she learns something new and she can't wait to learn more. I know she will continue to impress us and grow everyday.

GO ALY!

Aly's Eye Surgery Adventure!

March 14th was known to most people as Pi Day, but to us, it was the day of doom. Aly's eye surgery on both eyes was scheduled. Primary's doesn't just tell you what time, they go by age and the youngest kids go first, so the day before they call, tell you what time to come in, and when your child has to stop eating/drinking. Aly got the call to come in at 6:00 am Thursday morning. She had physical therapy the night before and just was not into it. I wonder if she was feeding off our nervous energy.

We all got up early Thursday morning and packed up for Primary's. We got there early, but had a little trouble finding the same day surgery waiting room. We got checked in pretty quickly and then had to wait in a couple different waiting rooms. Aly's surgery was scheduled for 7:30, and we were nervous, but she was having fun playing with toys, watching Tangled and crawling around. We met with the anesthesiologist Dr. Spano, a very nice man who promised he would take good care of her, and try not to put the IV in the hand she sucks the thumb of. Dr. Hoffman came in and checked up with us. He said surgery would take about an hour and he had about an 80% chance of fixing her eyes completely. We gave Aly kisses and hugs and sent her off with Dr. Spano.

Aly enjoying the waiting room

About an hour later, Dr. Hoffman came back to bring me to post-op. Aly was not happy when I got back there. They gave her a bottle of apple juice and whenever she would drink it, she would stop breathing as much, so they'd have to bring over the oxygen. She was just so upset, she pretty much just cried non stop for almost an hour. After we got moved into regular recovery, she still would not calm down. She wouldn't eat, or suck her thumb. We even tried turning on Daniel Tiger's Neighborhood, which did quiet her down for a little bit.

Once we were discharged, we packed her in the car and gave her all her favorite toys. She slept most of the way home and then woke up once we were in the drive thru at Taco Bell. She threw up about half the apple juice all over herself and her car seat and on some of her toys. Once we got home, she still was really upset. She wouldn't nap, and she just crawled around her crib and cried. Eventually she passed out and slept for awhile, and slowly started to come around. By the second day, she was almost completely back to normal. Her eyes are red in the corners, but they are a lot straighter. She will still need glasses, but she will be able to see better. She has a follow up in about a month.

Aly the day after surgery

GO ALY!

Support

Lately I have been thinking about support groups. There seems to be a support group for everything. Children with heart problems, autism, epilepsy, etc. There's a support group I belong to for people with children in glasses, called Little Four Eyes. It's been very helpful with Aly's strabismus and given me good advice and other parents to talk to that understand our situation.

Aly had a followup appointment with her PO (Pediatric Opthamologist) and because her glasses are not completely correcting her eye turn, he wants to do surgery. I was not expecting that. I thought we had a lot longer to wait until we went that direction. But her eyes are still working together and she does not have a lazy eye yet, so surgery is probably the best option. If she developed a lazy eye we would have to correct that first and then do surgery, so it seems like surgery is kind of the goal no matter what.

I am not happy about this. I was hoping 2013 would be the year of less time at Primary's, less doctor visits, less intervention. I've been talking to the L4E gang about things and they have been very supportive.

But I wish there was another support group for us, but the problem is I don't know what support group I'm supposed to belong to. There's no "Babies who had seizures and brain swelling that had no apparent cause and spent 10 days in the hospital with assorted maladies and are now mostly fine but have development delays and other issues." I don't really relate to any one group more than others. And it's hard because I feel like I don't have any outlet with that. The only one who understand are me and my family. I don't know what to expect, and I don't know that even if I found a group for this, they would know either. We're kind of on our own here. Aly gets to blaze her own trail, and we get to learn as we go, I guess.

So, we have surgery scheduled for March 14. They will call us the day before to let us know when to go in. I guess they basically do it by age, so the youngest kids go first. I hope she is one of the youngest ones so we have less time to wait. I am worried that the surgery won't go well, that it won't fix her eyes or that she will have a reaction to the anesthesia. She is such a good happy baby and I really hate doing anything to her that will hurt her, but if we can get her eyes corrected, it will help so much in the future. At least that is how I am going to look at it. Wish us luck!

On a happier note, my friend's babies are out of the hospital and home. I am so happy they are doing well and are off their machines and being sweet baby boys. Now, the fun really starts. :)

GO ALY!

The Next Step

Aly had her follow up appointment with her neurologist on Tuesday. Dr. Betsy said her EEG was normal. She checked Aly's reflexes and muscle tone and said they looked good. She was surprised how different Aly looked just 4 months later. Dr. Betsy gave us the green light to begin taking Aly off her seizure medicine. We will slowly taper down the dose from 7ml to 5ml to 2.5 and then nothing. I have been hoping to be able to do this for a long time. The phenobarbital has been very good, she has not had any seizures since she left the hospital, and we haven't noticed any side effects from it, but the Doctor says it can cause cognitive and behavioral problems with long term use. We also were given some doses of Ativan we can give her in case she has a seizure longer than 5 minutes. I am hoping she doesn't have any more, but we were warned that she will always be susceptible to seizures especially when she is sick or has a fever.

Every time we see Dr. Betsy she seems so amazed that Aly is doing so well. Without saying the words, she has pretty much implied that Aly shouldn't be doing this good. Which is great, but also leads me to think when's the other shoe gonna drop?

Aly wearing her special "Three Little Birds" onesie for good luck

Aly is still seeing her PT and OT once a month each, and seeing EI 2x a month. She is not walking yet, but stands unassisted when distracted, and is getting better with her hands. She's not talking though and not saying Da like she used to. Pretty much as soon as she started crawling, she stopped talking, which her therapists say can be normal, but I wish she would start again.

Aly is doing really well in physical therapy, and should be able to stop going once she starts walking. No idea when she will stop with the other things. I believe she will qualify for Early Intervention until age 2 and may also qualify for vision therapy. As grateful as I am for all this, I sometimes feel like is this how it will always be? Just a revolving door of therapy visits and doctor appointments? Can we ever just let Aly do it on her own?

That being said, I love my little girl and am amazed at her every day. She has the cutest laugh and best smile. She brings so much love to my life, and I am so thankful she is here with me. She is a miracle through and through. She doesn't make me think of the fear and doubt and anger I felt while she was in the hospital, she only reminds me of how many people came out of the woodwork to love her when she needed it the most. She made me gain more faith in people.

One of my friends from work recently had twin baby boys, and they are currently in the NICU at two different hospitals, and one of the babies just had open heart surgery. I am glad to see people are rallying behind them strongly. Primary's makes miracles, my baby girl is proof of that. I feel so strongly for them, and I know everything they are going through must be even harder because it's two fold, and being pulled in two separate directions. I will be cheering for their babies and wishing them the best.

GO ALY!

(and GO LANE & WILL!)