A Perfect Day Brought To Us By Children's Memorial...

A few posts ago, I wrote about how I had finally been able to schedule Juliana's gastric emptying study.  It was scheduled for this morning at 8 AM.  I should have known it was going to go badly when I scheduled it.  I had asked if there were any special instructions.  I was told "no".  So I said, "oh, so we can feed her before hand?"  To which I was told, "Oh, no.  She can't have anything to eat 6 hours before the test".  I responded, "Hmmm, that sounds like special instructions to me".

Last night, I set my alarm for 1:45 AM so that I could feed Juliana in the middle of the night.  Ever since she was put on the appetite stimulant, she has returned to getting up in the night once or twice to eat.  My alarm went off, I got up and fed her a bottle (yes, my 19 month old is still on a bottle- walk a day in my shoes before you judge me).  She drank about 5 ounces and then fell back to sleep.  At 5:10, Ryan woke me up and told me he was done in the shower and it was my turn.  I showered and got dressed and then got the rest of our stuff ready to leave for Children's.  At 5:45 Ryan went up and got Juliana and we said good bye to Grandma Vicki (who spent the night so she could watch Noah for us) and left.

We arrived at about 7:15- we were supposed to be there no later than 7:45.  When we checked in a the front desk, the receptionist sent us to the wrong floor (second clue that the test was going to go badly).  We were redirected back to the correct floor and checked in with the radiology department who immediately fell in love with Juliana.  By 7:30 we were back in the room that had been reserved for us for the next 4 hours.  The radiologist went through the testing schedule with us and then came the part where they talked about the delivery of the isotope.

"Does Juliana eat solids?"  "Yes.  Just not a large quantity."  "We usually put the isotope in eggs and have them eat the eggs.  Will she eat eggs?"  "It would be better to put the isotope in her drink, because we know she will drink the drink.  We brought the drink with so you could do that (I pull out the drink)".  "We only do the liquid with babies or children who have a g-tube or n-g tube.  The liquid test isn't as accurate because liquids move through the stomach faster than solids do.  Usually little kids will eat enough of the eggs to make the test work."  "Well, she doesn't like to eat, which is why we are here.  The drink would be easier."  "Well, let's try the eggs first.  You just have to get her to eat some of them.  Get as much of them into her as you can."  "Okay, we can try the eggs first."

So, the special eggs come.  Fortunately they arrive with ketchup- which Juliana has recently shown a liking to.  They gave us 15 minutes to get as much eggs into her as we could.  Ryan loaded up each egg bite with ketchup.  After maybe 4 or 5 bites, Juliana was done.  She refused to open her mouth.  The techs came in and told us we had to get her to eat more eggs.  I explained that she was all done, that she would not eat anymore and that if she had not eaten enough they needed to put it into her drink.  By this time Juliana was crying on the floor.

The head tech came back and told us that they were not able to put the isotope in her drink now because she had some already in her system from the egg and the test would not be accurate, because they wouldn't be able to tell what was solid and what was liquid in her stomach.  "You told us that we had to get her to eat some of the eggs.  We did that.  If you had told us she needed to eat all of the eggs, we would have told you that that was not going to happen.  Now what are we going to do?"  "You will have to come back another time and do the test".  To which Ryan immediately replied, "We don't want to come back here."  I asked, "Can we schedule the test right now while we are still here?"  "Well, I need to get a new order from the doctor since she didn't complete the test."  "Are you kidding me?!?  You know what, I'll just talk to Dr. Fishbein at our appointment later this month."  If I was this incompetent at my job, I would be fired by now.

Since they couldn't do the test, we fed Juliana (who drank her drink- about 4 ounces and stopped crying) got her dressed, and then left to go back home.  I called my mom to let her know why we were coming home, only to find out that she was also having a bad day- she lost her contact and Noah dropped a flashlight in the toilet after he peed in it- a perfect day all around. 

Sometimes it seems like God is just finding ways to test us.  "Hmmm, what can I do to set off Jenna and Ryan today?  I think I'll mess with the test that has taken them a month to set up.  Sounds like a plan to me."  I know that's not how He works, but today that's how I feel.  On a positive note, I only swore in my head and via text message and I didn't punch anything.

The giant x-ray machine she would have been in 

Trying to eat the ketchup-y eggs

Finally getting to eat/drink something she liked

Feeling better after getting to eat

Helping Daddy work from home

Baby Jesus, Optimus Prime, & Megatron...

Christmas is Noah's favorite time of year.  As soon as Halloween is over he starts asking to put up the Christmas tree.  Yesterday as soon as he got up from his nap he asked, "Daddy, could we please put up the Christmas tree?"  Ryan and I were both tired from our Thanksgiving Friday, but who could resist a little boy who asked like that.  So, Ryan said yes.  While Ryan made room for the Christmas tree, I dug out the Little People Nativity set to occupy Noah and Juliana for a little while.  Noah immediately dragged Juliana over to it, set it up and told her the story of Baby Jesus.  It was so sweet, and lasted for about 5 minutes.  Then, Noah grabbed Optimus Prime and Megatron and brought them to the Nativity scene.  At first they were also worshipping Jesus, but then they decided to attack everyone.  Juliana joined in by taking the angel, Gabriel, and throwing him against the wall.

  Well, I guess you can't be sweet all the time, right?

Counting Calories...

No, this isn't going to be a post where I complain about eating too much at Thanksgiving or how I need to lose weight.  Quick recap: Last month when we were at Children's with Juliana they wanted us to stay in the hospital so that they could monitor and journal her food intake for three days.  Ryan and I refused to keep her in the hospital for that, since we had done that for her first year of life (Ryan even provided them with a color coded graph for solids and liquids).  Since we are both (to be honest) nerds/science people we were more than capable of journaling her food intake outside of a hospital setting, so we were sent home with the hospital recommended "journal paper" (which I have to say is less detailed then the one we kept) and told to mail it in after we logged her food for three days.

Now, it isn't that we have been procrastinating doing this.  There really hasn't been a time when we had three consecutive days where we could log her food intake- we have to weigh her food before she eats it and after she eats it.  Since Juliana goes to day care five days a week, we definitely did not want to ask Theresa to worry about logging her food intake and there are only two days for a weekend.  So, that brought us to Thanksgiving.  Ryan brought home his scale that he uses at work and we started her journal on Thursday.  It really isn't that difficult.  The only thing we have to do is keep a close eye on her at the table, as she likes to feed the dogs her food instead of eating it herself.  It's not that we allow her to feed them from the table normally, because we don't, it's just this time we have to account for every piece of food.

I don't know what they hope to gain from this.  We told them that she eats age appropriate foods, just not enough.  Maybe that's what they will see from the journal.  We know she's not malnourished, because her bloodwork didn't show it.  Either way, I will be glad to have this done.  Thursday she is being evaluated by a nutritionist who hopefully will give us more ideas on how to add calories to her food- besides the obvious: fat.  Maybe she will be able to find value from the food log as well.  Who knows?  Anyway, for your amusement, I took pictures of the weighing of a cinnamon roll that we made as a treat for breakfast, and then both sides of the "official" food journal- as you can see, her food intake each day is quite different even though she's on an appetite stimulant (the first day is the bottom right corner, the second day is the middle picture, with day three right below it).

Thankful...

Reading my blog you may not think that I am thankful this year, but I am.  Here are the things I am most thankful for this year.

1) Ryan.  He puts up with me and loves me no matter how crazy or moody I get.

2) My kids.  They love me...even on the bad days.

3) My mom, dad, sister and brother in law.  They have been so supportive through everything we have gone through, even when we have our differences.  My in-laws have been great and supportive as well.  I know it's hard for them being in a different state and far away from us, but they do a good job of encouraging us as well.

4) All of Juliana's therapists: Peggy, Laura, Meghan, Connie, & Suzy.  Without them, who knows where she would be?  Before them, Juliana wouldn't open her mouth to eat, she couldn't sit up on her own, she couldn't crawl, walk, and was generally unhappy.  Technically with the lack of calories she eats she shouldn't be able to do any of the things she does now, but she can and I chalk a lot of that up to her very hard working therapists.

5) My job- for several reasons.  I have excellent insurance which allows us to see all the necessary doctor's for Juliana.  It allows me an "escape" from all the stress I am under with Juliana.  Just having a job in this economy is something to be thankful for and being a tenured teacher gives us something to not worry about.

6) Our pastor, Dennis.  He has encouraged me a lot lately, and I have needed it.  His sermons have also been challenging me alot lately.

7) Friends at school & friends at church.  Sandy, Lisa, Lauren, Mary Ellen, GP, and Samantha have really been there for me this year.  Tristi, Kelly, Kristyna, and Sarah have been encouraging me a lot.

8) Theresa, our babysitter.  Her willingness to do whatever it takes to get food into Juliana allows me a mostly worry-free day.  She opens up her house so that Laura can do Juliana's speech therapy two days a week as well.  Plus, she genuinely loves my kids.

9) All of you who read my blog.  Whether or not you leave me a comment, I appreciate that you take the time to read what I write.

10) My life long friends, the crackbabies: Adriane, Cari, Juli, and Bucky (a later edition and leader).  Friends since junior high, it's like we haven't been apart when we get together.  Your text messages and checking in on facebook or through email make my day.  I miss you guys.

I am sure I am forgetting some, but at this time I will chalk it up to my brain injury and lack of sleep.  Have a wonderful Thanksgiving!

Visitor...

One of the things I enjoy about teaching is when students return to visit.  Yesterday one of my favorite students came to visit me.  Yes, I know teachers aren't supposed to have favorites, but there are some kids that really touch your life and you can't help it.  I never treated her any different in class than any other student, but secretly she was one of my favorite kids. 

I had Shannon last year in Anatomy & Physiology- Honors.  Shannon is an amazing young lady.  She was ranked 7th in her class, a cheerleader, very intelligent, extremely nice, and very active in school.  The weekend before the seniors last week of school, Shannon was in an accident.  She was thrown from a golf cart and hit her head on the ground.  She experienced a traumatic brain injury.  The kids she was with were afraid they would get into trouble so they didn't call for help for several hours.  When I found out, I was terrified for Shannon.  This young lady was looking forward to college, she had been accepted into a nursing program, and now they didn't even know if she was going to be able to go to college at all. 

I started sending Shannon emails on facebook and cards to her house.  I figured that since I had gone through something similar it might help her out a little bit to know she wasn't alone.  The highlight for me was when I saw her at graduation.  She looked a bit dazed and out of it, but I got to talk to her and give her a hug and that's when I knew that she was going to be able to make it.

So yesterday Shannon came in for a visit.  It was so nice to see her.  She looked really good.  She was able to go away to college, and her grades are great- although she is a little too hard on herself about them.  We talked about head injuries and the things that we both find overwhelming and what we do to cope with them.  She has a really positive outlook and I know she is going to make an amazing nurse when she is done.  I am amazed that she was able to go away to college only 3 months after her TBI.  I don't think I could have done that.  So Shannon, you are an inspiration to me and everyone out there who lives with a brain injury.  I am so proud of you!  Please come visit again.

Meltdown...

Ryan went out of town this week.  Juliana started back on her appetite stimulant and started projectile vomiting again.  Noah had two accidents in the night for the first time.  Needless to say it's been a draining week.  There was a brief highlight to it.  Wednesday night my dad spent the night because he needed to drive to and from Indianapolis on Thursday, so he entertained the kids for a couple hours before bed while I did laundry and made Noah's bed and got the kids' stuff ready for Thursday.

Ever since Juliana's visit to Children's Memorial we have been trying to schedule a Gastric Emptying Study.  In our discharge papers from the hospital it said if we didn't hear from Radiology within 3 days we were to call ourselves.  Of course we never heard from Radiology, so when I called, I was told the order was never put in the computer.  I called the doctor and left a somewhat nasty message, of course it was a Friday, so I knew no one would get back to me that day.  Last week a nurse called back and said if Juliana wasn't projectiling anymore then she didn't need to have the test.  Well, it had been 3 weeks since her last projectile episode, so we didn't need to schedule the test.  This past Sunday we re-started her appetite stimulant (she has to go off of it when her appetite decreases since her body gets used to it), and on Monday she began to projectile again.  I called the doctor's office and phone tag started again.

Yesterday the nurse called me back and left me a message assuring me that the order was in the computer and all I had to do was call the number she left on the machine to schedule the appointment.  I copied the number down last night.  Today as soon as my plan period started, I dialed the number.  The first person I talked to had never even heard of the type of test I was asking about and transferred me to the nurse's department.  I waited on hold for about 10 minutes.  The nurse was fairly helpful.  She asked me several questions but could not find the order in the computer.  I think she could hear the frustration in my voice as I forced myself to be pleasant.  She put me on hold several times while she tried to sort out the mess and she even called the doctor's office for me.  After 30 minutes (so now 40 minutes of my 56 minute plan period is gone) she found the order and told me she couldn't set up the appointment but Radiology could and she would transfer me to that department.  She even gave me the number in case we got disconnected.  I waited on hold with Radiology for 5 minutes until I got a human being.  This one was not as nice as the nurse.  She told me there was no order in the computer.  I asked her how that could be when the nurse I was speaking to before her had been able to find it.  So after another few minutes she found the order but then proceeded to tell me that she couldn't schedule the appointment. 

"You've gotta be kidding me," I said.  "Why the heck not?"  She said that the order was in the computer but the doctor's office had not released the order.  "What in the world does that mean?" I asked, trying to keep my temper.  Basically it meant that I needed to call the doctor's office and tell them to release the order.  I looked at the clock.  I had about 6 minutes left before my plan period was up.  I dialed the doctor's office, pushed all the buttons to get to a nurse, but of course I got voice mail.  I left as civilized a message as I could explaining that I have been trying to schedule this appointment for 3 weeks and could they please just release the order and hung up the phone.

I put my head down and my frustration got the best of me and I started to cry.  Fortunately the only people in the office were Lauren and Tino.  When Lauren asked me what was wrong and I started to tell her, these words I never use came out.  I don't often swear and I never use the "f" word, but today as I melted down those words came out of my mouth and while I felt better at the time, I am still embarrassed that I let my guard down to let those words come out.  Then, of course, the bell rang and I had to compose myself to go to class.  At least it's Friday and Ryan comes home tonight.

Happy Birthday, Mom!

Happy Birthday, Framma!  To the Momma who is my champion.  Who lets me call her whenever and whatever time it is.  Who lets me cry on the phone.  Who doesn't yell at me when a swear word slips out.  Who loves me no matter what.  Happy birthday, Mom!  We love you very much!

So Much To Think About...

I didn't want to go to church today, but I knew I needed to go.  I have been angry with God for a while.  I sit in church and feel like a fraud.  I sing the songs and tell people I'm fine but I'm not.  I tell my friends who are hurting that I'll pray for them, and I really mean it and I really do it, but when they ask me what they can pray about for me, I say "oh nothing we're fine".  Why do I do that?  I spent the first year of Juliana's life praying to God for her to get better and for the doctor's to figure out what was wrong with her and we heard nothing.  An entire year was spent praying to God and nothing came of it.  I felt like I didn't matter.  So then I got angry and climbed up my hill and stuck my middle fingers up in the air and said, "well screw you then, I can do it by myself."  It's been six months since I've taken on that attitude, and clearly that isn't working either.

Someone told me that God was going to "teach us something through this".  I told that person that that was a load of horse crap (well, I used a different word, but I have to keep this G-rated) because what kind of loving God would use an innocent baby as a lesson?  Seriously?  Are you kidding me?  My mom tried to give me a different explanation and I wasn't buying it at the time either-sorry Mom.

So this brings me back to the beginning.  I didn't want to go to church this morning, but I did.  Dennis gave an excellent sermon on worry.  It was like it was written for me (well played, God, well played).  The descriptions fit me to a "t"- up at 3 am, not sleeping, not eating, etc.  It ended with Dennis challenging us to give our worries back to God.  Now, I'm not saying that I'm ready to do that, because I'm still angry, but it definitely has given me something to think about while I am up at midnight or 3 am.

Saying Goodbye...

Tonight I am meeting my friend Lauren and together we are paying our respects to Drew's family.  I can't tell you how thankful I am that she will be there with me.  Every time I go to a wake for a student this is the hardest part for me.  It's not supposed to happen this way. 

This picture sums up all of the emotions that I am feeling, so I'm not going to write anymore about it before or after I get home.  Thank you for your sacrifice, Drew.  God Bless You.



Tough Day...

I knew that today was going to be tough.  This morning one of my co-workers ran into me in the copy room, I had had her son.  He's a Marine in Afghanistan.  She talked to him this morning and told him that I had lost a student in Afghanistan.  He told her that "Mrs. Mahlberg's heart must be breaking because she loves her students so much.  Mom, you need to make sure she's alright".  He told her to give me a hug from him.  That made me cry this morning before school even started.

I have never experienced a military processional and I had no idea what to expect, but I knew I would most likely cry.  What I didn't expect was that when we were asked to explain to our first period classes what we were going to do as a school to show our respect, that I was going to start to cry in front of my class... but I did.  In my years of teaching, I have had several students die and it never gets any easier.

During my plan period, my friend Lauren and I were working on the computers in the office.  Another teacher came in and started complaining about how what we were doing was taking away from the test that she was giving during that period.  Lauren and I both were giving tests today, and we both had Drew as a student.  We both held our tempers to the best of our abilities as we tried to explain that it was not an "inconvenience" when this former student gave his life for our country.  She continued to complain, and both of our tempers continued to rise and a few choice words slipped out before Lauren and I walked out of the office to get away from it.  I don't understand how someone could be that detached to not understand the purpose of honoring someone's sacrifice, when most of my students got it.

When the announcement was made to proceed outside, I found Lauren.  We both held our flags and tried to make small talk as we waited for the processional.  There were 6 helicopters flying around the school.  We could see other adults lined up on the main road waiting to pay their respects.  Then we saw the flashing lights of the motorcycles.  I gave a little gasp as I saw all of the motorcycles.  Later a student told me she counted 63 of them.  My eyes teared up, and the student population fell silent- you could have heard a pin drop.  Then I saw the hearse and I started to cry.  Next to me I could hear Lauren crying too.  We both tried to keep it quiet.  A student standing next to me put her arm around me- I don't even know her name.  They circled the school, and when they came to our side all the students held their American flags up, and I continued to cry. 

After the procession left, everyone stood there for several minutes in silence just letting it soak in as the sound of the helicopters faded away.  Lauren and I put our arms around each other and joined the population walking back into the school.  We commented to each other about how difficult that was and how we never want to do that again.  We also mentioned how good the students were and how respectful they were.

Tomorrow will be just as tough.  Tomorrow is the wake.  Tomorrow Lauren, myself, Mary Ellen and Bernadette will see Andrew's family and tell them how sorry we are for their loss, but that won't stop the hurt.

Andrew died a hero.  He gave his life for others.  Here is another link about him.

A Fallen Soldier...

I had Drew (Andrew) Meari (this takes you to an article about him) as a sophomore in Investigations of Matter & Energy. He was wrongly placed. A bright young man, he had goofed off his freshman year and done poorly in his Biology class. He easily earned A's both semesters in my class and was my assistant in the classroom. I could always count on him to help out my sub when I was absent, he would help set up labs or pass back papers. He was an all around nice kid, but his home life wasn't so good and he started to get into trouble at school his junior and senior year. After graduation he enlisted. I always support my students who join the military, but I always fear the day when I turn on the news or log onto facebook and see the notice. You know the notice that I'm talking about.

Yesterday Juliana got up around 3:50 AM. After I finished feeding her, I grabbed Ryan's iTouch and logged onto facebook (I haven't been sleeping well for the past few months), and I saw the words that I've been dreading since the war started. RIP Andrew Meari. My knees gave way and I started to shake. No! Not Drew! I wanted to scream. He was just getting his life together, he can't be dead already! Another former student, another soldier, reminded me that Drew made the ultimate sacrifice and gave his life for our country, but it still hurts. He was too young to be taken from us.

Thank you Drew. You are a true hero (another article about him and the other young man who died).

Thank You, Kelly...

Last week was rough. We had a big disappointment with our visit from Children's Memorial. I can't even tell you how much that devastated me. I had had such high expectations and hopes. I can't even talk about it because it makes me so very angry. I know I posted the story, but that doesn't even begin to tell you what we went through, I gave you the edited version, the version you would see if you put on your rose colored glasses. I haven't even begun to deal with the anger I feel about what happened and it has put me into a kind of "funk". It's not a depression, I've been depressed. I went through a horrible depression after my brain injury and after the Jeff incident, I know what depression is like and this isn't it.

Friday night, Noah and I were hanging out watching some Thomas the Train while Ryan put the little girl to bed, when the doorbell rang. I opened the door to find Kelly standing on my doorstep with a BEAUTIFUL bouquet of sunflowers.

Kelly, I can't begin to tell you how much that brightened up the mood in our house. I can't begin to tell you how much that gesture meant to me, but it meant a lot, so thank you, Kelly. You are a good friend. I hope that one day I can be there for you the way you have been there for me these past few years.