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!)

New Year's Resolutions

2012 is drawing to a close and I find myself reflecting on the events of 2012. This was not a good year for me. I lost some special people, and I feel like I lost some of myself. I feel like I will never be able to be the same parent I was before. I will wake up in the middle of the night when Aly cries and assume the worst. I will over analyze every move she makes, every twitch every expression. I will have a calendar littered with doctor's visits. I just wish I could be less anxious. Sometimes I think I'm getting better, some times its worse. I think I'm getting stronger, but I still find myself triggered by the smallest things.

I want 2013 to be a better year for so many reasons. I want to believe it will be, and we can make it better than the last. I won't make any resolutions for myself, but I think Aly has some.

Aly's 2013 Resolutions

-Learn to walk
-Say Mama
-Learn to drink from a sippy cup
-Cut some new teeth
-Grow big and stronger
-Push my walking toy all by myself
-Put the coins in my piggy bank toy by myself
-Feed myself
-Catch the kitty

-Get my eyes straightened out
-Stop taking my phenobarbital
-Stay out of the hospital
-Give hugs and kisses to everyone I love
-Meet all of my Mama's friends who cheered for me when I was sick

I think she's on the right track to accomplish them all. Here's to the new year!

GO ALY!

Boss-eyed

Sorry about the lack of updates. Aly is doing well. She still goes to therapy 2x a month and she has been working on her crawling and standing lately. She can stand unsupported for about 20-30 seconds. She can push her little alligator clacker toy with help, and she can sit down from standing without falling down.

Aly went to the ophthalmologist on Halloween to see Dr. Hoffman. Her neurologist referred us. Aly looks cross eyed occasionally, and one of her eyes has a tendency to turn in. This had gone away, but was starting to come back after she got out of the hospital.

She saw the eye doctor who dilated her eyes and took a closer look at them. He determined she has accomodative esotropia. From research I've done and wikipedia, this means that her eyes are not properly aligned and when she tries to focus on something the eye turns in. He said the optic nerve could have been weakened due to the pressure in her head, or she may have had the condition all along. Her vision is actually fine, its just the trouble she has focusing can cause double vision, which can then lead to a lazy eye, when the brain starts ignoring the weaker eye. He prescribed glasses to help her focus.

Aly in her new glasses

 We had a little trouble getting her frames. Very few places actually sell glasses small enough for babies. The doctor told us to go to Costco, but they didn't have anything her size. We also had trouble when we lost her prescription and had to wait for the ophthalmologist's office to send us another copy. We found a store over by her pediatrician's office that was perfect. They ordered us a very cute pair of Miraflex glasses in the smallest size they offered. The price wasn't too bad either. So far, Aly is still getting used to wearing them. She pulls them off occasionally, and she doesn't always like wearing them. She is getting better every day. Her eyes look straighter, but not completely. I've been told that could take some time, or her prescription could need to be adjusted. She will have a follow up with Dr. Hoffman in a couple months to see.

Aly has a big month for December. She will have a physical therapy follow up, and she will have her follow up EEG toward the end of the month. I really hope everything goes well, and I'm able to update with happy news.

I'm not gonna lie. Aly getting glasses was a little hard for me. Until then, she looked like every other kid out there. I didn't want something to make her look different and single her out further. But so far, the response has been very positive. Most people simply comment on how cute she looks. I'm hoping these glasses do the trick and that they don't bother her too much.  Maybe she won't need them after a year or two.

GO ALY!




Ps. For those of you who don't watch the "IT Crowd," here is where the "boss-eyed" thing is from:

Thank-full

I am thankful for all the wonderful people in my life. I have an amazing set of family and friends.  I am thankful for every day I have with Aly, thankful that she is here and continues to grow and learn and thrive.

I just want to thank all the people who loved on Aly while she was in the hospital. I want to thank the doctors and nurses, the therapists, the techs, the social workers, lactation consultants, pretty much the entire staff of Primary Children's hospital. There is not a day that goes by that I don't think about it and feel grateful that we live so close to this important place. If you ever need a charity or a cause, Primary's is a solid choice. This place saved my daughter's life and continues to provide services for her recovery.

 

Please be thankful for your children every day even when they drive you crazy and all you want is a moment's peace. Please be thankful now, when you don't need to be. Please snuggle your kids more than you think you need to. You never know when you will wish so hard just to be able to hold your baby. Please give people a break, even when they don't deserve it. That is when they need it more than ever. Don't judge anyone too harshly, you never know when someone is having the worst day of their lives. Be thankful every day! 

Happy Thanksgiving!

GO ALY!

Daddy's Letter

October 21, 2012

Aly/Alex/Alexandra,

                Hi! It's your dad here. I can't believe you are already a whole year old! It seems like just yesterday that you were just a little speck of a person who couldn't even eat. Now you're our big, standing, and scooting baby babooshska!

                I still remember when you were born, the first thing I did was count your fingers and toes while they were still picking you up. Five on each hand and foot, just like there should be! You had a hard time learning how to latch and eat at first and your mom and I were very worried. I finally got you to eat a bottle of formula. I guess it wasn't very good since after that you ate all your mama milk with no problems!

                We love you so much and you have brought such joy to our whole family. You've always been very happy and sweet to everyone. Plus, you were a very healthy baby too! That is, until July. That's when you got very sick and had to go to the hospital. Your mom and I (and everyone else!) were so worried about you and even the doctors weren't sure you'd be ok. It was ok, though, because you are the strongest, bravest person I've ever met. You pulled through and came home in only ten days! I am so proud of you for getting through everything so well. That being said, if you ever scare your mom and I like that again, you are grounded for life! If you ever think your mom and I are being over-protective that is part of the reason. We just love you so much and we appreciate how lucky we are to still have you in our lives!

                Recently, just in the last week or so, you have been a little grumpy. We think you are finally starting to get more than just your bottom two teeth. You still are a sweet girl, but you have been having little crying fits. It's been a bit hard to deal with you screaming all night long, but I know you'll get over it.

                Anyway, I've been staying home with you for about a month now, and I can't tell you how special it's been. Every day you seem to learn something new, whether it's standing up or banging your toys together or, now, starting to crawl. You were a couple months behind on your development when you got out of the hospital, but with all your therapy (with Beth, Dani, and Eunice) and all the work we do, you are totally blossoming. It does my heart good to see your progress every day. You also need to know how amazing your mom has been through all this. It's been very hard for her to go to work everyday while I get to hang out with you. When you get old enough to read and understand this, please thank her for all the sacrifices she has made for you and me. You have an amazing mother and are very, very lucky.

                Mostly, though, I want to thank you. You are truly the best thing that has ever happened not only to me, but our entire family. I've never seen grandparents (and great-grandparents) who love their grandchild as much as you. You have a magic about you and you just make people happy. You are destined for great things, Alexandra. You just need to work hard and believe in yourself! You are only turning one and you have already proven yourself to be brave, strong, kind, smart, inquisitive, and unbelievably adorable! You are here for a purpose and I can't wait to see what it is. Your journey has begun (and is a year into it already!) and I will be here to support you any way I can. I am always in your heart, child. I love you more than I can ever tell you. HAPPY BIRTHDAY ALY!

Love,

Dad

One

Dear Aly,

You are one year old today. I plan on writing your normal 12 months letter where I talk about all the stuff you've done in the last month, and all the stuff that is going on, but this is a special one year old letter. I just wanted to tell you that I love you more than I think you will ever know. At least not until you have a child of your own. Having a baby changes something, I don't know but I feel like its kind of narcissistic to love something you made so much, and yet here we are. I just wanted to tell you Aly, that your mother will always be your biggest fan. I will always be cheering for you, I will always want you to be happy. I will walk backward through hot coals blindfolded for you, I will throw myself into shark infested freezing water if you need me too. I want you to grow up happy, secure, positive, polite, thankful, thoughtful, selfless, but I will take you however you end up. It is my job to raise you right and just know that you are going to be who you are. I will always fight for you my love. I will always have time for you. I will always choose you over anything else.

I do worry Aly, about the future. I worry that you will always be just a little behind. I worry that you will be the weird kid, or labeled a loser, or a loner, or that you will be shy like me and have trouble making friends. I worry that you will have trouble in school. I worry that I won't know how to help you. I worry that I will say the wrong things. I worry that I will hurt your feelings when I try to make you feel better. I worry that I will always worry too much!

While I will worry about you, I want to make sure you get to experience everything good in life. I will let you play outside. I will let you go sledding in deep snow, I will let you play on the swings, and I will become an expert in any sport you wish to try. I won't try to push you into any one thing. I will let you choose your own music, movies, tv shows and even let you have a crush on the next Justin Bieber teen idol that comes along. I will let you make mistakes and I will help you learn from them.

I will make sure you are protected too. I will do everything I can to keep you safe when I can. I will try to understand that you will get hurt, but I will always be there to make it better.

You are an amazing little girl. You have taught me so much in just a year. You have challenged me and rewarded me and shown me so many things I never knew about myself. You are the best thing that ever happened to me. Please know that you are so, so loved. I never knew a baby that was as loved as you are. Never doubt how we feel about you. You have so much more life to live and you have so much more to show us.

There will be bumps in the road, there may be hard times, sad times, we may lose people we love along the way. Just know that you will always have my support. You will always have love, and strength. You may not always think so, but know this: You Are Enough!

Happy birthday my beautiful daughter! Here's to many more years!


Love always, Mom

Eyes Wide Shut

Just wanted to give my loyal readers a quick little update on the “Go-ings of Aly” haha. She is making some progress with her gross motor skills and has mastered the ability to go from laying to sitting. She has also figured out how to stand up in her crib and has freaked out her dad with that trick a couple times lately. She still doesn’t do things like bang toys together or clap, but she likes when you model it for her or make her do it. I’m hoping she’s just on the verge of figuring it out.  (Edit: Daddy just sent me a video of her banging together like a pro!) She also has started babbling like crazy, not just nonsense but more consonants sounds, especially “Da.” I think “Dada” is her first word. Everything is “Dadada” so I don’t feel left out! Although, she seemed like she said, ”Hi” a couple times starting at like 3 months old.

Aly did give us a little bit of scare last Saturday morning. She woke me up crying at 6:30 am. It was not her normal, “I’m up Mama, come get me,” cry, it was more a, “I’m not happy, I need my Mama now!” cry. She was acting really grumpy and not wanting to open her eyes. This is concerning because she is usually in a good mood in the morning. I changed her, fed her, and put her on the floor to play. She kept rubbing her eyes and then crying, but then would act completely normal, so I wasn’t sure what was wrong. I thought maybe she was having an allergic reaction, or possibly a hair or dirt was in her eyes. She just wasn’t acting like her normal sweet self. After texting back and forth with Ben, we decided to call her Doctor. Yes, we are those parents, we are going to end up on a first name basis with the Pediatrician’s office at some point. She has been to the regular Pediatrician 2x since she got out of the hospital, once for not pooping for 6(!) days and then now for this. Turns out she had a pretty good sized scratch on her eye. Dr. Marriott (I know!) put some florescent drops in her eye and held a black light over and we could see it pretty clearly. He said it would heal on its own, but gave us some drops to help keep it clean. Getting the drops in her eyes is a bit tricky, but she seems to be feeling better and is not rubbing her eyes as much. We have cut this girl’s nails but they are still sharp little things! Hopefully she learns not to do that.

So that was fun, a little bit scary for me. I had flashbacks to when she was in the hospital. She looked like a zombie, with her eyes half open, and then she stopped opening her eyes altogether. We never were told exactly what was going on, they thought it might be the pressure in her head holding her eyes closed. Plus, everyone keeps commenting on her eyes and how she always looks cross-eyed and might have a lazy eye. She has had her eyes checked twice already and both times they have been fine. She does have another Ophthalmologist visit at the end of October, so we’ll find out more then.

Right now, a major source of frustration is communication with her Neurologist. We are stuck playing a game of tag with her, we’ll call her, leave a message, then get a message from her, then talk to a receptionist who says a third thing. We were hoping to have a new EEG done to evaluate whether she can wean off her seizure meds, and they keep prolonging the process. I was hoping we could be done with it by the end of the year. Now, we’ll have to wait until January.

I can’t believe my little girl is going to be 1 year old. This has been the hardest year of my life, no doubt. Being a mom is the hardest and yet the easiest thing I have ever done. Having Aly has changed and challenged everything I thought I knew. I am so excited to have her 1^st birthday party and celebrate the first year of her life. She deserves it.

GO ALY!