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!

11 Month Letter

Dear Aly,

Happy 11 Months Baby Baboosh!. Today is also Gr Gr Paul's birthday. You sat in his lap and had cake. You like everything we feed you. Sweet, sour, salty, we haven't tried spicy but I'm sure you would like it too. You are doing so well. You are finally able to push yourself to sitting from laying down. You are getting really close to crawling, you get up on your hands and knees and rock, but you haven't tried to move yet. You can stand with support and you are learning to move from sitting to standing, knees to stand and all kinds of transitions. These are very important things your physical therapist wants you to learn. You are talking a lot, but not saying any actual words. We think you are on the verge of figuring it out. You are doing well with Daddy at home and you are still taking two naps a day and sleeping from about 7 pm to 7 am with 1 or 2 wake-ups per night. You eat about two bottles of milk and then several baby food meals a day. You still wear 9 month clothing and size 3 diapers. On your last neurologist visit you weighed 16.9 pounds and you were just under 28 inches tall. You are always very happy in the mornings. You are very friendly and you suck your thumb whenever you are tired. No more binkies for you. We are trying to get you to start drinking from a sippy cup instead of a bottle. You go to physical and occupational therapy 2x a month, and your therapists love you and say you are one of their favorites. We can't believe in just another month you will be one year old. The time has flown by! You are a miracle baby girl. We are so happy we have you and we love you always and forever

Love,
Mama

Why?

Wish I had something of importance to write about. We're holding steady. Ben has been doing the stay at home dad thing for two weeks now, and I think he's getting the hang of it. I think he is also beginning to understand that Aly is a full time job! He works all weekend and tries to get as many hours as he can, so Aly and I get a lot of one on one time on Saturday and Sunday. Still can't believe how much my life has changed in only a couple of months.

I have bad days here and there. I try to focus on the good, but some days I still have trouble. I think I will need some time to process things. In a way, I feel like I am grieving something, but I'm not sure how to grieve something I'm not sure I lost. There is still so much that is unknown. There is so much I am still worrying and wondering about. I know it's not good to worry about something you can't control, but the way my mind works, is that I only worry about things I can't control.

I still feel that life is too unfair. I still feel that Aly didn't deserve anything that happened to her. I still wish I could find some comfort in something bigger than myself. Once again, I find my faith (or lack thereof) tested. I don't know if I can or if I want to believe in God.

Aly still has physical therapy and occupational twice a month, plus early intervention and she will be seeing her neurologist often and she has some tests coming up. She is still behind. It still stings when I see a baby younger than her doing something she can't do though. I know I focus too much on the stuff around me and what other people are thinking and doing, but I can't help it. I still say why me? Why us? Why Aly?

Someday I hope to move past needing to know why. But today it still bothers me. Today I want to know why and what. Today I worry about the future, even though it may not need worrying about.


GO ALY!

Miracle Child

Yesterday, I started writing an extremely negative post. I was feeling very sorry for myself. Very jealous of other people and their "easy" lives. Aly's doctor visit today brought me back to earth.

I am lucky. I am blessed. My baby is doing much better than expected. Things could be so, so much worse. Instead of wasting my energy being jealous of everyone else and feeling punished, how about I appreciate that my daughter is in the business of making doctors scratch their heads and eat their words.

We found out that another baby had a similar situation at the hospital, with similar symptoms. They were worried an infection was going around. It wasn't an infection. Sounds like the other baby had a much worse outcome than Aly.

This doesn't mean I'm not gonna feel angry, or jealous or like we have been treated unfairly by God. But this does mean that I'm going to try harder to keep things in perspective.

I still have my baby. She is my heart outside of my body. She is happy. She is thriving. She is proving them all wrong. She is amazing. She has such a capacity for love. She trusts so readily. She forgives. She smiles and I swear the entire room lights up. These are the things I need to remember when I am asking, "Why me?"

What a difference a day makes.

When Aly was in the hospital, all I wanted to do was hold my baby. When I am feeling especially low, that's all I need to do, and she reminds me what is really important. That I can still hold my baby. And that means everything.

GO ALY!

Ch-Ch-Changes

This week we have had a little bit of a break. Aly has not had any Doctor or therapy appointments for the entire week. Of course she will make up for it next week by having three. Seems to be the way things work. All or nothing.

Since Aly was 3 months old and I went back to work, she has been going to daycare. Our daycare provider is amazing and we love her. I believe her quick action the day Aly had the first seizure is the reason she is still with us. She visited Aly in the hospital and made sure we had everything we needed. We also love how close she lives to us.

After Aly got out of the hospital we decided to have her stay with her Grandma for a few weeks so she would get some one on one attention while she was still getting re-acclimated to being out of the hospital. The plan was to send her back to daycare the last week of August when her Grandma goes back to school (she's a teacher).

Unfortunately for all involved, we're not going to be able to take her back to daycare. We agonized over the decision, whether to find another daycare or to figure out a way for her to stay home with us. We had some extra stuff to consider, if she would do well in a regular daycare, would one take her, how much more would it cost...etc. Well, we added it all up and something had to give. So Daddy decided his job was the easiest to sacrifice and he will be quitting his full time job to stay home during the day with Aly. He will still work part time on nights and weekends. We did not make this decision lightly. We felt it was in Aly's best interest and that's kind of what it all comes down to. We live in a world where certain college degrees are better to have and while Ben already has a Bachelor's, he is not able to do much with it. He was planning on going back to school next year anyway. So this just all kind of happened in a matter of weeks. It will be an adjustment on all ends.

We are lucky that I have such a good job with good benefits and that we don't have a huge mortgage or loans to pay off. Yes, money is going to be extra super tight. Even though we are saving on daycare, we are still losing an income and we are going to be facing some large medical bills. We also have very supportive family and friends that have been able to step in and help in the mean time. Each Grandma has been on Aly babysitting duty this month and they have been so much help.

We have a busy week coming up. Aly has her much anticipated Neurology follow-up with Dr. Betsy. I have a ton of questions that I need to gather up. She will start having her normal Early Intervention visits a couple times a month but she will be able to space out her physical and occupational therapy visits. She has made a lot of progress since she has been home. I would say she is almost back to where she started. Now she has to work on doing the age-appropriate things a normal 10 month old would do. I have to believe having Daddy home to work with her and take her to her rehab will help her even more.

GO ALY!

10 Months and Other Stuff

The Happy 10 Month-er

Aly turned 10 months on Wednesday. I write her a letter for every month about what is going on. Our lives have changed so much in the last month, I can't believe where we started, where we were then, and where we are now. Next month things will have changed even more. Some days I just hold Aly and laugh and kiss her and marvel that I have a ten month old baby. Some days (like today) I just hold her and cry a little. Then she laughs at me and I forget what I was crying about. Today she has decided measuring cups and spoons are her new favorite toys. She will play with the everyday things like cups and spoons much longer than any fancy baby toy.

Here is the ten month letter:

Dear Aly,

You are ten months old today! I can't believe how fast the time is passing. On your last month birthday you were still in the hospital. Now you are home and doing so well. You are doing PT or OT at least once a week and you have Early Intervention planned for at least once a month as well. You are making progress. You can scoot again like crazy and you can sit up by yourself for longer. They are making sure you don't neglect your left hand. You have some great doctors and therapists working to get you all better. You are finally starting to wear 9 month clothes. You are in size 3 diapers for the most part. You weighed about 15 lbs, 12 oz at your last dr. appointment, so you are gaining some weight back. You are eating lots of solids now, you still like everything. You have been baby sat by Grandma Roxann for a few weeks, and now Grandma Robyn is taking a turn. You are always in a good mood in the mornings. You wake up once a night to eat. Sometimes you won't take your two naps and then we have to deal with a grumpy gina before bed. You had your eyes and ears tested today and both were fine. You had a follow-up MRI a week ago and that went well. People are still sending you presents, thinking about you and cheering for you. You have brought nothing but joy and love to everyone. Mama and Dada love you so much little boosh. We are so happy to be your parents.

Love always,
Mama

it's just hard

 It is very hard for me to accept the fact that Aly has had this happen to her and that we won't know what the long term effects will be until she grows up. It is very hard having people tell you what is wrong, but not why. It is hard knowing that your child may never have a normal life. I have friends who have children with special needs and I always felt sorry for them. Now, I don't feel sorry for you, I am in awe of you, that you keep on keeping on and hold your heads high and fight like hell for your kids and don't throw in the towel.

I want Aly to have as normal of a life as possible. When you have a kid, you make plans for them and dreams for them and right now I don't know how high and how far I should be setting the bar for her. I don't know what normal is going to be for Aly, and that is really hard. The last few weeks since we've been out of the hospital have been very good, but going back to the hospital snapped me back to reality. It was naive to think that she'd be able to survive this much damage to her brain without some kind of problem to show for it. It's hard to reconcile how much she has already been through, with how much she has overcome and finally how much she has left to work against.

Yes, Aly is a fighter and she's already fought some extremely tough battles. But there comes a time when you just want to stop fighting. You can only fight so much before you have to tap out. Hopefully Aly will be stronger than I and keep going even when I just want to lay down and stop trying. Aly is a tough little cookie, but its sad that she has to go through this now. Most people don't have these kind of obstacles and they never have their strength tested this much. She's only 9 months old and she's been through more than I have in my whole 28 years. Hopefully we can all get through this, we have to. I know we will, but today I'm just not feeling too optimistic. I wanted to make a more positive entry tomorrow about how it's been a month since this all started, but I'm not feeling that at the moment either.

It's hard lying to people and telling them your baby's fine, because she looks fine, but you've just heard about how her brain is still a mess and still having to field people's questions about what happened and not having an answer. It's hard both worrying about her progress and at the same time getting excited about how much she has regained. It's hard comparing your child to other children. That's something that is hard no matter what your child is going through. That is something I keep telling myself to stop doing, because it only leads to madness.

Hopefully once I see the doctor and maybe get some answers (if any) I will feel better. But right now I am away from Aly and I can let myself ride the "feeling sorry for yourself" bus. I can be strong for her later when she needs me. Sometimes it's just hard to be strong.

GO ALY!

Ask, and you shall receive

So I debated posting the last entry. I was in bad mood when I wrote it. I was feeling kind of sorry for myself. I figure this is my blog and its for me more than anyone else, so I can't censor myself. I have to be real. I was amazed at the response it got, but then again attention seeking posts always do that. :)

When Aly and I got home from Occupational Therapy with Danni yesterday (love her, gotta do a post about OT and PT and Aly's great therapists) there was a package waiting for us. I thought it was something I ordered from Amazon. But it was addressed to "The Ackerman Family" so we opened it up, and there was a bounty of riches. A book, a snuggle bug, and a gift card to Beans and Brews. It was like the universe arriving to give me a kick in the pants. Yes, people still care, and stop your whining! I didn't find a name or return address anywhere on it. I still can't get over the kindness of strangers. If you are reading this post, anonymous gift giver, thank you from the bottom of my heart. (and Aly and Ben's) You obviously know us pretty well, since B&B is our favorite coffee place, and we love anything bug-related.

Once again, people continue to surprise and awe me. Aly's experience in the hospital continues to teach me things and will continue to humble me and really make me think twice about life. I have tried to be less judgmental, more giving, more loving, less negative, more forgiving and less angry. But sometimes, I find myself slipping into old habits. Thanks to everyone who reached out to me and reminded me that everyone is still rooting for us. It means so much just knowing you're there. Thank you for sending the love, as you can see, we still feel it, and sometimes we just need a little extra shot of it to get through the day.

GO ALY!

We're Still Fighting

Thing are starting to get better. Aly is, anyway. She had PT Tuesday and her therapist was impressed. She's scooting again, she can hold herself up on hands and knees and she doesn't wobble her head so much. She has physical and/or occupational therapy at least once a week this entire month. Busy busy.

I already feel like people have stopped caring about Aly and stopped reading the blog. Because Aly's not in the hospital, everything's fine right? She's not fine. I'm not fine. I don't think people can really understand how traumatic what we went through was. I almost lost my child. I could still lose my child. I don't even want to type that, but it's true. What if her brain swells again? We might not be so lucky...

If I knew what was wrong with her things might be different. I asked the doctor for warning signs and he didn't really have any. I guess if she starts seizing again. I don't like the uncertainty, the fear that something is still wrong and we won't know it. Even though we have a follow up in a month and another MRI next week, I also feel a little abandoned by her doctors. I have no one to call with questions, I don't think her Primary care doctor knows half of what went on. I haven't received any information about the tests that we were waiting on when we went home. They are so focused on getting her enrolled in rehab and this program called Early Intervention that I feel like the rest doesn't matter.

Even though I feel like people don't care, I know it's not true. One of our friends from the radio station started a facebook page for Aly and a donor account to pay for the massive bills we are receiving. People are asking about Aly every day. People are still rooting for her. It's less drama for people when she's not covered in tubes and hooked up to machines, so I should have known the massive outpouring of support was going to slow down. I always knew that it was going to be hard to transition back to real life. I don't even know what real life is for us.

Right now, I am working about 32-36 hours a week and Ben is working 40. We work opposite schedules, he closes and I open. This means he does not see Aly after he gets home. Her bedtime is right when he gets off work. Aly is used to getting up for the day around 6 am so it doesn't make sense to try and push her bedtime later, when I have to get up that early for work anyway. It sucks being a grown up and having to make sacrifices. Part of being a parent is putting your child first. Yeah, it would be nice to have Ben home to take care of her full time, or even me. But we can't afford it. Sometimes being a grown up means gritting your teeth and just powering through.

I love my daughter. I will do whatever it takes to make her happy and healthy. If that means we are in debt up to our eyeballs, I will do it. If that means her daddy only gets to see her on weekends, he will do it for her. Someday she will understand. Maybe not until she has a child of her own. Hopefully, she will thank us. We will cheer Aly on no matter what she is doing no matter how big or little the fight. I know sometimes the crowd will just be the two of us, and other times it will be the whole crowd.

GO ALY!

Landslide

One of the things that helped me the most during Aly's hospital stay was music. I could do an entire post (and probably will) on songs that helped me or that held special meaning for me during this time.

One such song, is Landslide by Fleetwood Mac. While I was pregnant with Aly, I listened to the Dixie Chicks version of the song a lot. My Grandpa Elmer died the same day I found out I was having a girl. The song really hit home for so many reasons. I listened to it once a day for several weeks. I would almost always cry. Now, just thinking about the song, I feel tears start.

Aly turned 9 months on July 22. We decided to really celebrate her birthday and we went to Smith's Marketplace to buy her a present. I wanted to get her some nice blankets instead of the generic hospital blankets. So when they kicked us out of the PICU for shift change we went to the store. On the drive there, the radio played Landslide by the Smashing Pumpkins. This is a song they never play anymore. The Smashing Pumpkins are one of my favorite bands. We took it as a good sign. That was the day she really started turning around, and started opening her eyes again. The next day she left the PICU.

I've heard Landslide a couple more times since then, which is pretty rare, since before then we almost never heard it on the radio. It's like the Universe telling me things are going to be okay. It's funny how the same song can mean so many different things at different times of your life.

Landslide
written by Stevie Nicks

I took my love, I took it down
Climbed a mountain and I turned around
And I saw my reflection in the snow covered hills
Till the landslide brought me down

Oh, mirror in the sky, what is love?
Can the child within my heart rise above?
Can I sail through the changing ocean tides?
Can I handle the seasons of my life?

Well, I've been afraid of changing
'Cause I've built my life around you
But time makes you bolder
Even children get older and I'm getting older too

Well, I've been afraid of changing
'Cause I've built my life around you
But time makes you bolder
Even children get older and I'm getting older too
Oh, I'm getting older too

Awh, take my love, take it down
Awh, climb a mountain and turn around
And if you see my reflection in the snow covered hills
Well, the landslide bring it down

And if you see my reflection in the snow covered hills
Well, the landslide bring it down
Oh, the landslide bring it down

GO ALY!

Hospital Survival Guide

The parent resource center at Primary's is amazing and definitely a survival tool for an extended hospital stay

Up until about a year ago, the longest I had ever spent in a hospital was about 8 hours when I was 12 to have an outpatient surgery done to remove a pre-cancerous growth on my head. (it sounds worse than it was, basically I had a bald spot on my scalp that they removed in case it would turn into cancer at some point. I still have a small scar where hair won't grow.)
Now, I have spent much more time in the hospital between giving birth and Aly's time at PCMC. I wouldn't call myself an expert by any means, but I do feel like I have some good advice on what one should bring if they ever have to spend time in the ER, maternity ward, picu, infant unit etc.

The number one most important thing...

1. SOCKS!! Hospitals are cold. I don't know about you, by my feet are always colder than the rest of my body. Trying to sleep with cold feet is always impossible. Plus if you have to get out of bed to pee walking across the cold hospital floor is a rude awakening. Even if you are just there for monitoring, those hospital blankets can never seem to warm up the feet. Buy those slipper socks that have the traction on the soles and your feet will be toasty warm, and you won't slip on the floor.

2. Lip Balm- I got the worst chapped lips in the PICU. They recirculate the air so it is really really dry. Even on the general floor, you are not getting fresh air so you will dry out faster. I liked Soft Lips this visit. But there are a ton of different lip products out there, pick your favorite. Make sure it's within arms reach for when you wake up in the middle of the night.

3. Your Own Pillow or at least a pillow from home- Hospital pillows are as bad as airplane pillows. Flat as a board, no support whatsoever. You can try mashing 3 of them together to almost get the softness of one regular pillow, or you can just bring one from home. I would also bring a pretty pillow case to differentiate form the hospital ones so it doesn't get thrown in with the laundry.

4. A iPad/tablet device- Unless you have a super light ultra book, a regular sized laptop and accessories can be a lot to lug around plus there is usually limited counter top space in a hospital room. The iPad is great because it charges fast (and you can use the same cord to charge your iPod, which is another important thing for the hospital) and its self contained. No mouse, no extras. You can use it to read, play games, check e-mail, take notes, do research. I suppose you could also use a smartphone, but sometimes the larger screen and apps lend themselves more easily to certain functions. Like LiveJournal.

5. A sleeping bag- If you are going to break the rules and have a second person spend the night, it will be nice to have at least some cushion between you and the hospital floor. Plus the floor is about 20 degrees colder than the already frigid air. This is something I would only pull out for an extended stay, and if you are going to be sleeping on the floor or waiting room couch.

6. A notebook- After so many days with no sleep and crazy amounts of stress, days and nights start to run together in one muddled heap. I found it helpful to make a calendar with what happened each day, which doctors we saw, what tests were run, who visited, etc. I also used it to track things like meds, feedings, songs I heard that meant something to me, and I also used it to just journal until I could get to a computer.

7. Food for the nurses- We gave our nurses Mickey Mouse shaped Rice Krispy treats from the radio station. Our friends also brought treats for the staff to the PICU one night. One morning I dropped donuts off at the nurses station. It's just a en extra way to show your appreciation. After spending 12 hours with a nurse, it can feel nice to do something nice for her after she took such good care of your child.

8. A change of clothes- Even if you are not going to stay the night, there are many reasons why a person in the hospital could need an extra pair of pants or a shirt. For me, the most common was baby vomit. Aly puked on me in the ER and I had nothing to change into. Luckily the hospital gave me a pair of scrub pants, but there were other times when I was not so lucky.

9. A toothbrush- If you are unable to shower, sometimes brushing your teeth is the best way to feel like you have cleaned yourself up. Bad breath can abound from lack of sleep, eating at odd hours and drinking coffee round the clock. When I had Aly, I forgot my toothbrush and went three days without brushing my teeth. Yuck. A clean mouth just makes you feel better.

10. A friend- Sometimes in the hospital, you get stuck in a altered state of reality. You forget that there is a world outside of what you are going through. The best thing is to occasionally leave the hospital, and talk about anything but what is going on in there. If you can just talk to someone about their life, or TV, or movies etc., you will remember that the world is still turning and you will be able to rejoin it eventually. So find a friend who is slightly removed from the situation, who will do that for you. :)


GO ALY!

The Worst Night

Two weeks ago July 18th, was probably the worst night of my life. Strangely it was probably not Aly's as she was so sedated and out of it she will probably never remember. Unfortunately she had worse days later in the week.

Aly was transferred out of the PICU after one night. She was grumpy and irritable, but she was not opening her eyes. They thought she might still be recovering from the seizures. She went upstairs to the Infant Unit where we saw the doctors there. One, Dr. Brittany listened to her head with a stethoscope and thought she could hear fluid in Aly's fontanel (soft spot). A couple different doctors listened to Aly's head. We were transferred to another room in the infant unit, this time a private room. But we hadn't even put down our bags when Aly's neurologist, Dr. Betsy came to the room and said I want her back in the PICU and I want an MRI asap. Originally they were going to wait to do the MRI, but Aly's condition had not improved, and the sound they heard in her fontanel had everyone on alert. Dr. Betsy had to pull some strings to get Aly in for the MRI. She had to beg people to stay late and round up people to do Aly's sedation and her breathing machine. They sent Aly for the MRI around 6:00 pm.

We got Aly back in the room around 8pm. The doctors had to spend some time with radiology to read the images. Two doctors, Dr. Jessica one of the PICU residents and another that I never got the name of came to see us after 9pm. They told us, "Let's all pull up a chair and discuss the results." Ben and I just knew. Doctors never sit down for anything. Aly's brain was swollen. A lot. All over her brain. They didn't know why. The outcomes could range from a perfect recovery all the way to death. They thought with the amount of swelling and trauma to the brain, brain damage was a very possible reality.

This is where it gets hard. The feelings are still very fresh to me. Plus, I don't know how comfortable I am sharing this because its not only my story, but Ben's as well. I will tell you that at one point I went completely numb and just sat there silently imploding. Ben had to leave the room and pace the parking lot to avoid having a panic attack.  I may have yelled at a doctor at one point.

I didn't allow myself to feel anything while inside the hospital. Once I went outside, and I was away from other people except Ben, I was finally able to let it out. I don't think I will ever cry that hard again. I just remember feeling so angry. Why my baby? Why me? Why did this have to happen? Aly was so healthy just a few days ago. How can this happen? I remember walking around the hospital grounds, just aimlessly wandering, hoping I could find a place I felt safe. I prayed. I bargained with God to spare Aly and take me instead. I begged. I made promises. I wanted to break things. I wanted to break myself. I mostly just wanted to stop feeling the pain. I just wanted to shut my eyes and make it all go away.

I would say I cried myself to sleep, but I don't think I ever slept that night. The next day, we decided to try to be positive and strong for Aly again. But just for one night, I fell apart. I broke down. Luckily Ben was with me, and he was the only person on the planet who knew exactly what I was feeling.

That was the worst night. I'm not going to say the worst night so far, because I don't think many things could make for a more awful night.

I like to end my posts on a positive note, so I will say that obviously, things did get better from then on. Aly did have a few setbacks, there were a couple times when I doubted she'd ever be the same again or leave the hospital. But she showed everyone. One of the PICU docs told us when she left the unit, "That is not the same baby I saw on Wednesday. I am so glad she proved me wrong." Aly will continue to prove everyone wrong who doubts her. She is the strongest little person I know and she's not even a year old yet.

GO ALY!

PT, OT and Two Weeks Since...

PT is hard work!

Today Aly met with her physical therapist, Beth. Physical therapy when you are 9 months old is basically playing with toys, practicing sitting, rolling over and pulling to stand. Beth said Aly is a little behind as far as her motor control for her age, which is to be expected after what happened and after she laid in bed for two weeks-ish. She's lost some muscle. Her legs are still pretty strong, but her arms are weak and so is her trunk. She is a little slow to react and takes a little extra time to catch on to toys. She still is a little wobbly and shaky with her head. She scores like a 6 month old on her evaluation. I'm just glad she only lost 3 months and not more. They are going to work with her about once a week for the next month and hopefully we will be able to work with her at home and get her caught up. She has an occupational therapy evaluation tomorrow. They will work a little more with her hands and see what she's lost there. Unfortunately I will miss that appointment, as Mama has to go back to work to bring home the bacon!

It has been two weeks since Aly went into the hospital, and almost 5 days since she got home. It doesn't seem possible that its only been that length of time, it feels like it should have been months. We talked to another family whose baby was in the hospital for over 100 days. I feel like we got away pretty easy. At some point I will have to go through my notes, and write down the story of her ten days in the hospital before I forget. Today was my first day at work since this all happened, and I told my co-workers the story and I realized how much you lose in just the two weeks. It may also be because while we were in the PICU, time just all jumbled together and I was running on little to no sleep.

Aly seems to enjoy being home. She's taking good naps about twice a day. She's sleeping pretty good at night too, usually only getting up once in the middle of the night. Last night, we checked on her around 4:30 am and she was lying in wait. I walk in the room and there is the unmistakeable aroma of poop. She had blown out of her diaper at some point and her pajamas were soaked. So we had to change her diaper, her pjs and give her a bath all in the early morning. She luckily did go back to sleep and let us sleep in until about 8. She had a good day with her Dad and they went for a walk around the neighborhood. Next week she will start going to Grandma's while we work. Luckily her Grandma is a teacher, and we can take advantage of that until school starts again.

I will be interested to see what OT says about Aly. We will be working with her closely to make sure she doesn't fall behind any farther. Luckily, our home exercises are a lot of the stuff you should be doing when you play with your baby anyway. Aly did great today, even though she was tired. She's a tough little peanut.

GO ALY!

Three Little Birds

Birds have been a reoccurring theme in my life, and so far in Aly's as well. My song for her is "Three Little Birds" by Bob Marley. I remember being so sick while I was pregnant with her and just playing it to try and feel better. I sing it to her all the time and a few weeks ago, I used a tutorial from Pinterest to make a picture for her room with some of the lyrics.

Tutorial can be found at http://www.abeautifulmess.com/2011/08/song-lyric-wall-art-diy-project.html

Also, my name means bird in Japanese. I have some friends who call me Birdie. Coincidence? My parents talked about how everyday they kept seeing more hummingbirds around the house, and Aly's great grand-parents talked about how they were seeing more doves while she was in the hospital. Also, the blog design has a hummingbird on it. I didn't notice it at first, but now I think it's perfect.

I think Aly is a lot like a hummingbird. They are little birds, but they are strong, tenacious and full of energy. Quoted from wikianswers, "In Native American culture, a hummingbird symbolizes timeless joy and the Nectar of Life. It's a symbol for accomplishing that which seems impossible and will teach you how to find the miracle of joyful living from your own life circumstances."

Read more: http://wiki.answers.com/Q/What_do_hummingbirds_symbolize#ixzz222XAfTWW

I know that's not always a great source, but I think the idea is spot on. :) Back to the song. There were times when I would just listen to Three Little Birds and cry. Or when I would sing it to Aly and she would calm down. I think the Three Little Birds are like me, Ben and Aly. I plan at some point to commemorate the song by getting a tattoo of three birds and maybe a lyric, but that will need to be carefully researched and agonized over for weeks first.

I know Aly is out of the hospital, but we still don't know the extent of the long term damage that's been done.  I just have to keep telling us all, "Don't worry!" Aly is a little hummingbird, fast and strong. 

GO ALY!

If you haven't heard this song, please check it out asap. Hope you love it like I do.

Link to song with lyrics: http://www.youtube.com/watch?v=zaGUr6wzyT8

Home Again Jiggity Jig

Aly all buckled into her car seat ready to go!

Yesterday, July 27 2012 at approximately 6:00 PM, Alexandra was discharged from Primary's after an 11 night/10 day hospital visit. Her time included: 4 lumbar punctures, a picc line, 2 EEGs, 1 MRI, two ct scans, an intraosseous infusion on each leg, numerous blood draws, an iv in each arm, a breathing tube, a feeding tube, an arterial line and a blood platelet infusion. (if you are unclear on what any of that means, by all means Google. I know I did). Out of her stay, 6 nights were in the PICU. We had two different rooms in the PICU and three different rooms on the floor.

We saw at least 20 nurses and probably twice as many doctors including neurologists, infections disease, a rheumatologist, cardiologists, a kidney doctor and  several geneticists. Still, Aly had them all stumped. They still don't know the exact cause of her seizures. She will be on phenobarbital for at least 6 months. We will be following up with her neurologists for another MRI in a few weeks and she will require physical therapy. She is already making great progress, regaining her strength. She can roll to her tummy again, and stick her legs straight in the air. Her neck is getting stronger as well, but it is still wobbly. Sometimes she is like a 15 pound newborn. She isn't as grabby, which I attribute to her arms still being tender from all the ivs and the picc line. She tolerates her therapy exercises, but will become irritable quickly if something hurts or is too hard.

She did really well on her first night at home. She went to bed at a decent hour and slept almost 10 hours. Mommy and Daddy checked on her almost once an hour for awhile there. I was surprised to find her sleeping on her stomach. It is her preferred way to sleep but I didn't realize she was back to rolling so soon! We are nervous having her home without the safety net of doctors and nurses at arms's reach, and yet home is where she needs to be for this part of her recovery. She needs rest, love, comfort and for life to get back to normal. She still needs everyone to continue to cheer for her, as this part of the fight will probably be the longest. We've all been through so much, but Aly has shown how strong she can be. She will tackle all the upcoming obstacles without missing a beat.

GO ALY!!

My favorite Aly-related poem

i carry your heart

i carry your heart with me(i carry it in
my heart)i am never without it(anywhere
i go you go,my dear;and whatever is done
by only me is your doing,my darling)

                                    i fear
no fate(for you are my fate,my sweet)i want
no world(for beautiful you are my world,my true)
and it's you are whatever a moon has always meant 
and whatever a sun will always sing is you

here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life;which grows
higher than soul can hope or mind can hide)
and this is the wonder that's keeping the stars apart

i carry your heart(i carry it in my heart)

~e.e. cummings 

This poem has been special to me for a long time, even before Aly was born. :)

I Miss Real Life

It's been 10 days since we went to Primary's. It feels like a million. It's hard to tell when one day ends and the next begins. It's hard to tell what happened on what day. I have been keeping a notebook of everything so that I can someday make sense of all of it and explain it to Aly.

I miss our old life. We were so lazy! We would come home from work and just veg every night. Ben would make dinner around 5, we would eat on the couch or in bed sometimes. I only recently started making us eat at that table. The problem is that Aly is too small for her high chair so there's no where for her to sit. So if we eat at the table she will cry the whole time because you have to leave her in the crib. But, yes, we were lazy. We had almost nothing going on most nights. We got take-out or drive through a couple times a week, we got our sunday morning coffee at Beans and Brews, and we spent way too much at Target. That was our life.

Boring, but I miss it now.

Now, our lives have forever changed. There is no vegging out in bed, there is no work, there is no spending too much at Target. Now it is a long procession of endless Doctors and Nurses, each one trying to take a stab at what could be the cause. Each one trying to make a connection, although brief.

Now, I feel like I am torn in two directions, one toward my old life of carefree routine and the other which is almost just as routine, but much more chaotic. I don't know when the next Doc will drop by or when the physical therapist will decide to work with Aly. I don't know when someone will come over to explain test results or when someone will find the answer. Most of all, I don't know when we will go back home and back to real life. I don't know if I am ready.

There will be no more letting Aly cry it out or leaving her just out of arm's reach. There will be no more letting her sleep without checking just one more time to make sure she's okay. I was never going to be one of those "hover parents." Now, I think they might have the right idea. I am going to have to check out video baby monitors on Amazon soon.

I never disliked our old life. I found it boring and too predictable at times, but it was comforting. Now the hospital is getting too familiar. I never want to feel like the hospital is my new home. but here we are.

Aly is doing so well, hopefully in another ten days this place is just the hospital we go to when she needs an outpatient procedure or when we drop in to say hi to Dr. Betsy or Dr. Kalm. I hope we can get back to our old life in some way.

and as always:
GO ALY!

More questions than answers

So Aly's diagnosis is still pending. When she had the first seizure on Tuesday the 17th, they thought it was just a high fever that caused a seizure, which I guess can happen in children occasionally. When she had another seizure, they weren't sure why because her fever was down.So off we went to Primary's, which meant we had a series of doctors and specialists taking a look at Aly and all of them drawing a blank.She doesn't have any one red flag symptom that screams, "insert diagnosis here." />
They have tossed around a ton of different scenarios, such as several different types of viral infection, kidney problems, vasculitis, an auto-immune disorder, a blood clotting disorder, cancer, and probably some others I can't remember. I am racking my brain to think of anything that happened in the last few weeks that was out of the ordinary, or anything weird she did that would help the doctors figure this out.

I have gone from  needing an answer to not caring to needing answers again. I don't understand how a perfectly healthy baby could spiral out of control so fast. We have paged "Dr.House" about 100 times here. I know Drs. don't know everything, and this is just as frustrating for them as it is for us. I really hope someone sees something soon that sparks a "eureka" moment for someone and they can finally tell us what happened and why.

GO ALY!

First Day on the Infant Unit

Cutest little patient. Love her hospital gown- Koalas in rocket ships!

Welcome to the Infant Unit Miss Alexandra!

The Burden Basket

On the third floor of Primary's, they have the meditation room. It is a small quiet room, you are not supposed to sleep or eat in there. It has a beautiful stained glass window. I like the fact that it doesn't cater to just one faith. They have several religious books and some healing stones and electric candles. They have a wall full of pamphlets dealing with grief and loss. The lights can be dimmed, or turned off completely. It is very peaceful.

They also have the burden basket, which is a Native American practice of leaving a basket outside your door, to put your burdens in so that they do not follow you into the home. The basket at Primary's is supposed to be made out of a special kind of wood that absorbs your sadness, fear and anger. You write your burdens on a peace of paper and place them in the basket, letting them go. Eventually the hospital chaplain burns them. The burden basket was just what I needed yesterday. I thought it was a wonderful thing to have in the meditation room.

I hope I didn't botch the meaning of these, my information comes from my own understanding and http://www.burdenbasket.co.uk/explanation_burden_basket_htm.

GO ALY!

I Graduated from the PICU and all I Got Was This Stupid T-Shirt

So Monday afternoon, Aly was looking really good. She had her arterial line taken out and had the EEG (the machine that they glue to your head so they can read your brain waves, I call it the Babooshka hat) removed. Her nurses gave her an express baby wash and changed her bedding and made her look super pretty. We had a speech therapist come by to do a swallow study and Aly did great. She had her first bottle since we went back into the PICU Wednesday night. She was a hungry little girl.


The PICU resident, Dr. Jessica, came by and looked at her and said she was doing so well, they wanted to let her "graduate" from the PICU to the infant unit. So we packed up room 12, where we've been for the last 5 nights and headed two floors upstairs to the Infant Unit on the 4th floor. Aly has a private suite, with a bathroom, and an excellent view of the parking lot. She even has a entertainment unit!

She's been doing good on the floor, although we are used to the more constant monitoring of the PICU. In the PICU, you are usually one nurse to one or two patients, and the unit is much more locked down and controlled. In the PICU, they have a shift change every 12 hours when the parents and visitors are kicked out while the Drs and Nurses huddle up and discuss the patients. It was frustrating at times to have to just pick up and leave for an hour while she was so sick. At times it was nice to have a break.

We had some amazing nurses and Drs in the PICU, I've been making a list of all the awesome people we need to thank. Now, I will have to keep track of the great ones on the floor. We are lucky that we live so close to Primary's. I can't imagine doing this if home was in another state or hours away.

Now that we are on the floor, we are hopeful that this can be a healing time for Aly, that the Doctors can continue to brainstorm and work together to figure this out. They still don't know what caused the brain swelling, and they are now moving away from the idea of it being a viral infection. They are going to have a rheumatologist look at her soon. They may have to a scan to check for a tumor. These are all things that scare me. Aly is a strong girl, and I know she is in the best hands, but I don't know how much more bad news I can take. However, a diagnosis could be good news because by some miracle this could a curable condition that we could take care of in this stay at Primary's and then we would never have to deal with it again. Right? A girl can dream..

I'll have to update after we get into a rhythm on the floor and learn what makes the infant unit tick. I'm hoping we continue to like it there and that we never have to see the PICU again. One thing that makes it different is she's able to wear actual clothes, instead of just a diaper. The gave her a little white t-shirt to stay warm, hence the title of this entry. :)

GO ALY!

Aly this morning- Staring at the phone

Gratitude

I figure the best place to start this blog would be a on a positive note. I eventually will have to get around to rehashing the last 6 or so days with the whole sordid tale of how we got here, but that can wait for another day.
I am not religious. I am not an atheist either. I would classify me as a hopeful agnostic at best. But I respect those with religious beliefs who do not feel the need to foist those on others. I believe in the power of positive thinking and I know that's what a prayer is. I believe God works through people and in this dark, lowest worst time of my life, God (if there is one) is working his ass off through many people.

Since Aly went into the hospital, we have had an intense out pouring of support and love sent our way. Complete strangers in every corner of the country are thinking about our baby girl and wishing her the best. It's pretty amazing and has pretty much restored my faith in people. I was a pretty cynical person before. But I've learned that even the most gruff, anti-child person can't stand to see a sweet little baby suffer.

People have come out of the woodwork in every way, we've had so many people offer help. People have sent gifts, offered to let us crash at their houses, make us dinner. We've had several religious people offer to have our baby blessed. Still haven't decided on that one. Can't hurt, is the way I lean, but I don't know if I want a stranger visiting just to do that.

I know they may never figure out what caused this. I don't know if I even care anymore. I just know that there are so many people out there who love my baby girl and that means everything to me. She will never doubt that she is loved by many. And as a Mom that's always what you want. I now know that I have friends in every corner and that support is never far away.

Thank you everyone! If you've liked a status on facebook, sent us a comment, thought of Aly in the shower for a minute and wished she was better, said a prayer, lit a candle, did a interpretive healing dance, or even if you just looked at a picture of her and smiled. I feel like every little bit of that good energy is fueling this fight.

As always...

GO ALY!

Welcome

This blog is to document my daughter Alexandra's (Aly) journey towards healing and recovery during her hospital stay at Primary Children's Medical Center in Salt Lake City, Utah. I would also like to use this blog as an outlet for my own thoughts feelings, rants etc that have been churning since this whole ordeal began. I welcome any followers, comments, hugs, cold hard cash and strength you want to send me or my family, but especially for Aly. This is her fight, we are all just sort of on the sidelines watching her and cheering our hearts out. GO ALY!!!

9 months

Dear Aly,
Happy 9 months Baby Baboosh! We are extra super excited this time. You are still the cutest, sweetest thing. You love to scoot on your tummy and roll both ways. You like your thumb better than the binky lately. According to the hospital, you weigh 7kg (15 ish lbs) and you are 27 inches long. Unfortunately you missed your 9 month appt with your regular doctor. You were sleeping through the night most of the time. You love solid foods and will try anything. You love to grab the iPad or our phones and we have downloaded a couple baby apps for you. We're very sad you aren't home for your birthday and that you have been through so much this past week, with the seizures, the MRI, the EEG, the art line, the picc line, the numerous ivs, tests, strangers coming at all times of the night and the puncture marks on your legs from the IO (intraosseous infusion). Someday we will tell you this story and you won't remember a thing about it. Just know, so many people out there sent you their love, strength, prayers, healing vibes, positive thoughts and cheers. You are a warrior princess and you are so loved.
Especially by me and Daddy!
love always & always,
Mama

8 Months

Dear Aly,

 

Happy 8 months! I feel like yesterday I was writing the 7 month letter Not much seems to have changed since then, but a big thing is that you started cutting your first tooth. It is a sharp little one on the bottom of your mouth. You love to bite us and chew on everything. We keep trying to feed you baby food but you like to grab the spoon and you make a huge mess whenever you eat. You stayed overnight at Grandma and Grandpas while Mom and Dad went to Wendover. You had a lot of fun with them. You roll over a ton and grab everything in sight. You are talking a lot, but no real words yet. You still are tiny and wear size 6 months clothes. You have been sleeping really well this week and haven't gotten up in the middle of the night since Sunday. Let's hope this continues. You love to play with the cats and pull their fur and ears. You still pull my hair and necklace all the time. I can't believe how close you are to being a year old. It just doesn't seem possible. Don't grow up too fast Babooshka!

 

Love you,

Mama

7 Months

Dear Aly,

Happy 7 Months! You have made a lot of progress since last month. You have started eating solids several times a week. So far you have tried oatmeal, sweet potato, peas, apples and avocado. You really like applesauce. We feed you in your swing since you are too small for the high chair. You like it but you spend a lot of time trying to eat the toys instead of your food. You have recently started rolling over and we find you on your tummy in the mornings a lot. Maybe you will be a tummy sleeper like your dad. You weigh 13 lbs 14 oz and you are 25.5 inches long. You are still in size 2 diapers. You are still our little princess. You have been sleeping pretty well at night. You sleep through about once a week and you still get up early even on weekends. We will have to teach you to sleep in. You can sit up by yourself but you prefer to be held or to sit in the bumbo. You love to giggle and laugh at us. You still nap best in your car seat on a long walk. You love to grab at the cats and we try our best to teach you how to pet nicely. You are very curious about everything and when we go out to dinner you try to touch our food our silverware and anything else that comes by. You went to Tepanyaki for Grandpa Sam's birthday and you loved watching the chef make our food on the grill.

You are such a cute sweet little girl.

We love you more every day!

Aly 6 Month

Dear Aly,
Wow! We can' t believe its already been half a year of knowing and loving you. You are such a good sweet baby and everyone adores you. You started sleeping in your own room a couple of days ago and you seem to be doing well. Before then we were having some rough nights and Mommy was only getting a couple hours of sleep. You can almost roll over and sit up. You like to make certain noises and screeches all the time. You love to be held and seem to like most people. You went to the park for the first time yesterday and went down the slide. You also laid in the grass but you didn't seem to like that much. You are even more aware of everything around you. You pet the cats and are very gentle. You love to be stood up and can almost hold yourself up. We have started giving you tastes of baby food. Today you ate a baby rice cracker. It was messy but you loved it. Tomorrow is your 6 month check up. we will find out how much you have grown. You are staring to outgrow your 3 month clothes and its time for the 6 month. Mommy loves you so much and you will always be my baby girl.

Love always,
Mom

Aly 5 Month

Dear Aly,

We made it to the 5 month mark. You are growing so fast, and while it is fun and exciting, its also bittersweet for Mommy. I love how little and sweet you are now and I don't want to lose my baby. I know that's a long way off, but time has already passed so quickly. You are becoming so much more aware of your surroundings and more curious all the time. You've started liking tummy time again, and you can hold yourself up really well, and you can scoot a little toward toys. You can almost roll over from back to tummy with a little help. You are obsessed with your own feet, and go around holding them whenever you can. You try to put everything in your mouth, especially blankets and fabric. We haven't started solids fully, but I have given you a taste of mashed potato and sweet potato. You have a little bit of baby allergies lately, so it looks like you will take after Mom in that way. You were sleeping great until about a month ago, and now you have decided you want to wake up about once a night to eat and play with us. Last night was especially bad, because you wouldn't go back to sleep for several hours. We love you very much, but wish you would go back to sleeping though the night. On a sad note, your Mommy's Grandma Lady passed away today. She was a really neat woman. She used to make your Mommy pretty dresses to wear for Easter and the first day of school. She also made clothes for Mommy's Molly doll, which I'm sure you will play with some day. We have a lot of happy memories of Grandma Lady and certain things will always make Mommy remember her. We will make sure you know all about her and what she was like. Mommy will hug and kiss you a little more today.

Happy 5 months my sweetheart.
Love,
Mommy (and Daddy)

4 Months

Dear Aly,

 

Happy 4 Months! Where has the time gone? We can't believe how big you are getting and that you are now 1/3 of a year old. Next stop, college! You are still our happy little sweetheart with your big gummy smile and color changing eyes and hair. You drool a lot and we still have to keep bibs on you to catch dribbles and spit up. You like sitting up and dislike being laid down on your back for long periods of time. You like to watch us eat and think its funny when I make chewing faces at you. You still have a tiny head and can barely wear most of your headbands because your head is so small. You have lots of diaper blowouts at daycare but luckily your Daddy is good at getting stains out of your clothes. You've been going to Libby's for over a month and seem to really like going there. We really like Libby too. You've had diaper rash from hell for a while and nothing seems to clear it up all the way. You spent last Saturday with your Grandma and Grandpa Dickson and they loved having you all to themselves. On weekends sometimes we have trouble getting you to take a nap. On those days the only way you will nap is in the car seat while being pushed in the stroller or in the car. Sometimes you have cranky nights where nothing makes you happy, but luckily it is not too often. You have decided you no longer enjoy tummy time and you will cry if we put you on your tummy for too long. You like to be read to, and we read you Dr. Suess books a couple times a week. You still wear3 months clothes and size 1 diapers. You are getting a little long for some of the smaller sleepers but some of your 3 month pants will fall off around your waist. You are going to be tall and skinny just like your Mama was as a little girl. We can't wait to see what's in store for you in the coming months.

 

Love always,

Mom and Dad

Aly 3 Month

Dear Aly,
Today is your three month birthday. You don't seem to be feeling well. You threw up all over your car seat and your kitty outfit. It was the most we have ever seen you throw up at once. :( Otherswise you are a very happy baby. You smile a lot and talk and babble to us. You started daycare on monday the 16th. Your babysitter Libby seems to really like you. You drink your bottles and take naps and you have had a couple diaper blowouts there but you are doing well. Mommy misses you every day. She gets you up at 5:30 to nurse before she takes you to daycare and you always seem to be in a good mood in the mornings. You are now finally in size 1 diapers and size 0-3 months clothes. Mommy gave most of your newborn stuff to kid to kid. You still don't really play with toys but you seem to like your rattle. We read books to you and take you in the shower with us. Daddy usually is the one to give you a "service" when your diaper is full and someitmes you poop on the towel after a bath. Your eyes are getting darker and you are getting more brown hair. Your head is still pretty small, we tried to put a headband on and it just slipped down around your nose. You still sleep good at night, but you tend to not want to nap at home. You hate being left in the room by yourself, and sometimes you like your "fun time" chair but other times you get overstimulated. You are such a sweet cute baby and everyone adores you.

Love always,
Mommy and Daddy