Alternate titles for this entry:

“Another Day in the Life”

“When It Rains, It Pours”

“Did That Just Happen?”

Yesterday was… eventful. And stressful. And one of those days that we will look back on and laugh at—eventually. Yesterday was our H1N1 vaccination day. After a lot of consideration and the advice of many trusted people, we decided to go through with the vaccines. I was against it at first, but the media thoroughly spooked me with all the stories of young children being hospitalized and/or dying, and with Alice going to school, all of our chances for exposure were high. So we bought into the fear mongering! (not really, I know of some people out there in the Blogosphere dealing with this very real, very scary flu… that was the cynic in me talking.)

The shot for Alice was cake. Her pediatrician had doses so we made an appointment and we were in and out in five minutes. Isabelle, on the other hand, had to go to the clinic put on by our county health department. Alice stayed home with my mom while Al went to work, and Isabelle and I headed off to the clinic, prepared to spend at least three hours waiting. As luck would have it, our area is getting clobbered with very cold wind and rain from Hurricane Ida right now, and the rain was coming down in sheets when we left. Isabelle fell asleep on the way and when we got there, I had to rip her from her warm, cozy slumber to wait in line outside. We had hoods and umbrellas, but the wind was very strong and she and I were both soaked and freezing. The line was moving slowly but finally, after about an hour and a half, we made it to the front of the building where we could spend the rest of our wait sheltered from the weather. I kid you not; the instant we stepped inside, my phone rang. It was Al.

“You have to come home right now, Alice’s button came out.”

“WHAT?!?”

“Her button came out; we have to go to the hospital.”

National Guardsman ushering me in line: “Ma’am, please move to the right.”

Me to the National Guardsman: “I have to go to the emergency room; my daughter’s MIC-key button came out!”

I rushed outside trying to reopen my umbrella against the wind and Isabelle quickly picked up on my anxiety, voicing little frightened shrieks as we raced back to the car. My arms were burning from holding her for so long (I set her down for a second in line and she literally almost blew over from the wind!). My wet hair was plastered all over my face because I forgot a hair tie and I could barely see through the raindrops on my glass lenses. We made it to the car and I drove home way too fast, almost hydroplaning more than once as I weaved in and out of traffic. I pulled into the driveway and Al came out with Alice, who was actually rather calm. We unloaded Isabelle, who stayed at the house with my mom, and the three of us headed off to the hospital.

In the time it took for me to get back home, Al had made it home from work and gotten the Foley catheter inserted into the opening where the button usually is and inflated it so it stayed in place. I dropped them off at the emergency room and headed back home, planning to take Isabelle back to the clinic while Alice was getting taken care of since ER visits usually last at least two-three hours. Not ten minutes after I dropped them off, I got a call from Al saying they’re already in a room and just waiting for a doctor to come to reinsert a new button. It turns out that because Al got the catheter inserted in time, the site remained open enough to simply replace the button. The ER nurses said that parents usually rush to the hospital in a panic without inserting the catheter, and the hole naturally starts to close as soon as the button comes out. When this happens, the process of reopening the hole takes about six hours because they have to start with a very thin tube and gradually increase to the diameter of the tube in the button.

I turned around and headed back to the hospital and in less than an hour, they were done! Alice had a new button and you’d never know anything happened. We drove back home and I changed my soaked clothes then headed back out to the clinic so Isabelle could get her shot. In the time that had passed, the crowd had dissipated significantly and we didn’t have to wait outside at all. After about an hour, we both left with shots, I being able to get one because I was: “the primary caregiver to a high-risk child.” When I heard that I was eligible, I called Al and told him to come down and get one, too.

So as they say, all’s well that ends well. At the end of the day, we were all vaccinated and Alice was barely affected by the day’s events. I’ll be honest with you, I spent a good hour or so being rather angry and annoyed that Isabelle and I stood in the rain for nothing, but after I cooled off (and warmed up!), I was just happy that Alice was okay. Hence, the title of this entry: when life throws you curveballs and you feel like breaking something, it’s often better (and cheaper) to just laugh.

As I said in my last entry, we got Alice in her walker for the first time since her G-tube surgery a couple weeks ago and she did so great in it!  The harness seemed to fit her better since she’s beefed up a bit and she was able to propel it on her own for a couple steps.  She hasn’t done this since the Botox wore off in March, so this was really exciting to see.  She wasn’t too jazzed about having her braces on at the same time, but that is something we are working towards because we don’t want any foot deformation.  When I initially put her in it (boots on) she got reeeeeeally upset, full on red-faced and crying.  I took her boots off and held her hands and said, “Alice, you know how Adriana [her friend from school] walks in her walker?  Let’s try to walk like Adriana does.”  As soon as I said “Adriana” she immediately stopped crying and I could see her thinking about what I was saying.  She calmed down and ended up staying in her walker for 45 MINUTES! 

Part of what kept Alice’s interest so long was Isabelle!  She had so much fun hugging Alice since she was in an upright position where she is usually sitting or laying down.  Isabelle also figured out pretty quickly that she could push Alice from behind!  This was absolutely hilarious to see.  Isabelle actually mimicked the effects of the treadmill by pushing Alice and I was able to cheer her on from the front.  What a good helper, Isabelle!  We went all over the front room and up and down the hall, and Alice was P-O-O-P-E-D afterward. 

When I dropped Alice off at school today, Vicki, her PT was there and it worked out that I could show her how to put Alice in the walker (it’s kind of tricky to get everything just so if you haven’t used it before).  So we got Alice in and at first, it seemed today was going to be one of those days where she was just NOT into it.  She was crying right away so I took her boots off, but that didn’t help.  I got in front of her to try to help pull her a bit, hoping to start the step pattern to break up some of her extension (when she gets mad, all her muscles go into super-extension mode and it can be hard to calm her down).  She still wasn’t having it, so Vicki and Teacher Lisa came over to give Alice some encouragement.  Then some of her classmates and a therapist from across the hall came over and soon Alice had a whole cheering section, clapping and chanting, “Go Alice!”   She still wasn’t thrilled, but she was fighting through it!  Vicki said, “Come on Alice, five steps and then you can get out!”  Wow, you should have heard the cheering—everyone was clapping and hollering and sure enough, Alice took SIX great steps and she was so proud of herself at the end!  I was so moved to see all of the support for Alice!  Vicki was really excited to see her in the walker and said that she’ll be sure to get her in it every day.  I wish I had brought my camera in to take pictures!  But I did take pictures of the first day and a short video of Isabelle pushing Alice.
 

(Click on pictures to enlarge)

Look how tall I am!

Hugs!

Note how nicely Alice is holding on to the sides of her walker!

Isabelle says, "Let me help!"
 

Way to go, Alice!

1. Somebody else always has it worse than you.
2. Somebody always has it better.
3. Better or worse has no effect on happiness. None.
4. The scariest thing about raising a kid with special needs isn't the limitations--it's the potential and how to unlock it.
5. Nutrition is incredibly important.
6. Vaccines should be treated with the utmost care.
7. Your kid is more typical than you may think.
8. There is no magical piece of equipment that will make your child walk/talk/pick up their head/crawl. That stuff takes hours of hard work on the part of many people.
9. The best wisdom comes from people who have been there/done that/bought the t-shirt.
10. The best wisdom does not come from your doctors.
11. Doctors work from generalities and your child is specific--don't forget that.
12. Always look at the kid--even if the tests look bad--look at the kid.
13. Go with your gut.
14. IQ is a measure of what you should know versus what you actually know--potential is immeasurable.
15. I no longer believe that brain damage=intellectual deficit. There are exceptions to this, but go ahead and assume that your child understands, explain consequences, and talk to them through out the day. Their bodies may belie their true understanding. Giving them the benefit of the doubt is free.
16. If a doctor tells you that you child will never be normal, ask them for the definition of normal.
17. Your kid is worth it--if a doctor cannot see you child's worth, get a different doctor. Yesterday.
18. Your child is normal. Disability is a normal part of the human condition.
19. Don't worry about whether or not you're making a friend uncomfortable talking about therapy or equipment or whatever. If they're any kind of friend, they'll figure out how to listen. Some people will be uncomfortable until they know the right language to use so use words like "disabled" and "special needs" around them so they know it's OK.
20. Looking at someone else's kid and being jealous is kind of like staring at somebody else's apple pie when you've got a slice of rhubarb right in front of you--time to figure out how to like rhubarb because that, my friend, is the slice you've been given.

Yay, Alice started school! 

I can’t believe that Alice started school today!  Up until this morning, all I was feeling was excitement and optimism about this new transition.  I couldn’t wait for Alice to be around children her age and new activities and surroundings.  Plus, I knew I had given her all of my best material here at home and frankly, we were both getting a little tired of the routine.  I’d be lying if I said I wasn’t looking forward to having some one-on-one time with Isabelle and extra time for chores while Alice was away.  Up until today, I could only see the plus side of school.

Then I woke up this morning, still in bed, with tears streaming down my face and a very heavy feeling in my chest.  Alice is going to school!  She’s growing up.  She has been the center of our attention for the past three years and suddenly today, she will be off in the big, bad world without us.  I didn’t worry about her not enjoying school or the teachers not taking good care of her.  Instead, it was hard for me to accept that already—after all that we’ve been through—Alice was taking her first step outside of our safe, loving, accepting nest into the sometimes brutal and unforgiving world.  I admit, that’s a bit heavy for the first day of preschool, but come on, before we know it she’ll be thirteen and… all that that implies.  It’s no wonder my heart ached a little.

We have been counting down the days to school for a week now with a pretty ring calendar we made with construction paper.  Every night before bed, Alice tore off a ring, getting closer and closer to today when she would proudly stroll into her classroom to make her big debut.  We met her teachers and all but one of her therapists last week, and they are all truly wonderful!  I felt very comfortable after that meeting and had no reservations about leaving Alice.  I was strong as an ox and ready to leave without shedding a tear until one of the other kids in the class—the only other girl, named Adriana—came up to Alice with her own leg braces and walking device to greet her. 

The teachers, Lisa and Bettina, and Vicki, the physical therapist had been telling Adriana that Alice was coming and she was looking forward to her arrival.  When she came over and said “Hi Alice,” it brought all of the feelings I had to the surface and tears spilled out of my eyes.  I grabbed Alice’s hand and explained to Lisa that these were happy tears.  I don’t know why, but I didn’t think a lot about the possibility of Alice having a friend and what that could mean.  I was overcome with happiness for Alice and all that she would experience and learn—things we couldn’t give her at home.  I came back at lunch time to help with the tube feeding and Alice was sitting so comfortably in a Tumble Forms seat on the floor with little Adriana sitting at her feet, playing the xylophone for her.  Lisa showed me a picture that Adriana drew with a smiley face and an arrow with “This is Alice” written next to it.  This little girl reminded me how beautiful and touching the outside world can be, too.  My heart almost burst!

All the fun and excitement really wore Alice out!  She fell asleep in her chair during her afternoon feed at around 1:30 and we picked her up at 2.  She was excited but exhausted and really liked when we talked about her first day of school later on.  She’ll go Mondays and Tuesdays from 9ish to 3ish.  She’ll get physical, occupational and speech therapy both days and probably one extra physical therapy during the week.  And of course aquatherapy!  She loves the pool and had an amazing session last week.  But before I digress onto other topics, here are the school pictures!

Alice’s follow-up went great; GI surgeon said everything looked like it had healed perfectly.  He said she was more than ready for activity and the next day we had her on her tummy in PT, which she tolerated wonderfully.  We also met with a nutritionist to talk about the vomiting and volume/rate ratio and she recommended that we switch to Nestle Boost Kid Essentials 1.5 Calorie formula.  It’s a more concentrated formula so she doesn’t have to consume as much liquid.  We have to push between 6-8 ounces of water per day along with the formula so she gets adequate fluid, but it is very easy to do.  There’s been a lot less vomiting and she has seemed in great spirits.  She had a great aquatherapy session on Friday and tolerated stretching, tummy time and time in her stroller very well.  Such a relief!

Huge news!  Alice starts school a week from today!  We meet with the teacher on Thursday and hopefully some or all of her therapists will be there, too.  I talked with her teacher on the phone and she sounded so sweet!  The girls and I made a chain calendar today so we could count down the days to school, and two books in regular rotation are “Curious George’s First Day of School” and “The Berenstein Bears Go to School.”  We are all really excited for this new transition, even though it’s a little scary, too.  More to come!

It has been two weeks already since Alice’s surgery, I can’t believe it.  We have really gotten the hang of everything, and Alice is showing marked improvements already!  She is so much more alert and her overall color and skin glow is better.  Her skin definitely feels plumper and looks less mottled.  It is very apparent to us now how dehydrated she was!   Looking back, there were many days when she seemed very listless and out of it, and I always thought she must be getting sick.  Thankfully, with adequate hydration and nutrition, I am seeing that old Alice sparkle that I remember!

While there isn’t a lot to complain about, I wouldn’t go so far as to say that this transition has been easy.  The first day was very chaotic because a lot of equipment and accessories came home with Alice from the hospital.  We are now paired with an at-home healthcare company that delivers all of the supplies Alice will need from here on out: feeding bags, formula, syringes, extension hoses, gauze, tape, even replacement buttons!  Until her stomach heals, Alice is on a feed schedule similar to a newborn.  She gets three bolus feeds of about 180 mL at a rate of 100 mL per hour, then overnight she receives 300 mL at a rate of 40 mL per hour.  The rate and volume are controlled by a pump that is currently mounted on an IV stand, but can also be worn in a backpack for school and other activities. 

The nighttime feeds have been the most challenging so far, mainly because we are still getting the volume to a number that is manageable for her.  There has been some puking, but they say that is to be expected as she gets used to having more food in her belly.  Plus, the formula she is on, called Nutren Junior, is milk based and Alice has been on soy based formula since January.  I am still waiting to hear back from the dietician on what our options are for soy based complete formulas.  She’s been throwing up about once every other day or so since she’s come home, so we’re at a point where we’d like to try a different formula.  The added fiber is nice, though… no Fruit-eze necessary!

At this point, Alice is very antsy and wants to get back to therapy!  Each bolus feed during the day takes almost two hours, and we’re either sitting or she is lying down, propped up on pillows.  I dare say even she is getting sick of cartoons.  We see the GI surgeon next Wednesday and hopefully he can give us the green light for activity and increasing the rate on the feeds.  We found out that school will start the last week in August!  We will visit with the teacher and therapists before that, but that is tentatively when Alice will be heading to school two days a week.  We are so grateful that we were able to get the tube surgery in so that Alice could heal completely and get acclimated to the routine before starting school.    One less thing to think about!  :-)