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