Parents Of The Year...NOT!

Yesterday Ryan and I did something we swore we would never do to Juliana.  My words from November came back to haunt me, "Just put it in her drink, she'll drink it".  Confused?  I'll set the stage for you.

Yesterday we were back at Children's Memorial for the second attempt at Juliana's gastric emptying study.  This time they were going to put the radioactive isotope in 2 ounces of her drink and then were going to try to get an additional 2 ounces of drink in her after that.  Juliana had not eaten since 12:30 AM, so she should have been hungry at 7:30 AM.  She took 2 sips of the drink, shuddered and was done.  Ryan and I looked at each other.  We did not want to have to go through this for a third time.  Then Ryan had an idea, "I wonder if they have syringes, and we could trick her into taking it like her appetite stimulant."  We asked for some syringes and they filled up several with the 2 ounces of radioactive liquids.  Ryan tried to give it to Juliana, but she was too smart and refused to open her mouth.  She began to struggle.  I took her from Ryan, cradled her in my arms, pinning her arms and legs down.  She opened her mouth and began to scream.  Screams that I haven't heard from her in a year.  Her mouth was open so Ryan took the opportunity and squirted 2 milliliters of liquid into her mouth.  She swallowed and screamed.  I wanted to cry with her, but instead I bit the inside of my lip until it bled. 

We swore we would never force feed Juliana and here we were, forcing her to eat so that we could do a damn test.  We continued the pattern- scream and squirt 1-2 mL's into her mouth.  After what seemed like forever, Ryan was done.  He had gotten all 2 ounces down her throat.  I turned her to comfort her and she pushed away from me, reaching instead for Ryan.  She wanted nothing to do with me.  Then it came time for them to "take pictures" of her insides.  They velcroed her down to a board and she began to scream again.  They pushed the board into a machine and then three of us had to restrain her arms and legs so that she was still for the minute it took for the machine to capture a picture of her insides.  We did this every 15 minutes for the first hour, and then every half hour for then second hour, and still Juliana wanted nothing to do with me.  It broke my heart that she was so angry with me.

I cannot even begin to say how horrible Ryan and I feel for what we did to Juliana yesterday.  Don't even say that we did what we had to do for the test and for our daughter, because did we really need the test done?  Honestly, did we?  I'm pretty sure that they're going to find nothing wrong.  We realize that she won't remember that I held her down while Ryan forced liquids into her, but we will remember.  We can still hear her screaming.  Last night after the kids went to bed, we just collapsed onto the couch and were thankful that we are not alcoholics, because after a day like that we would have gotten drunk.

Happy Birthday, Ryan!

When I was pregnant with Noah, Ryan turned 30.  On that same day, his Grandmother whom he loved dearly, went to be with Jesus.  Ever since then, Ryan has not liked his birthday.  Noah loves to celebrate birthdays and sing the birthday song.  He has been eagerly waiting for Ryan's birthday, and Ryan has been trying to get excited for Noah, which is one of the things I love about Ryan.

Happy Birthday, Ryan!  You are an excellent father to our children and a great husband to me.  We love you so very much!

Running To Your Arms...

For the past few weeks, this song has been going through my head. 



The beginning lyrics say, "You are good, You are good, when there's nothing good in me..."  Right now there is nothing good in me.  I had thought I had reached the bottom a few months ago, but I was wrong.  I am drowning, sinking, and there is nothing I can do except cling to the knowledge that God is in control, and for a control freak like me, that is not something that I like.

Last night we saw Dr. Fishbein about Juliana.  She is now at 19 lbs 12 oz, and will most likely meet my and Ryan's goal of 20 lbs by 20 months (insert a hell yeah here) so that we can finally change her to a forward facing car seat and get her out of that ridiculous infant seat that she came home from the hospital in as a baby.  Dr. Fishbein told us that after we do the stomach emptying study (yes, we still have to do that after the first fiasco) he doesn't have anything else up his sleeve as to why Juliana doesn't like to eat/won't gain weight unless on an appetite stimulant, which is a bit disheartening.  He is also interested in hearing what the geneticist says when we see that doctor next year, and he hadn't gotten any of the lab results from any of the genetic testing they had done when we were in the hospital back in October. 

So, at the end of 2010, here we stand, with still no answers.  Don't get me wrong, I realize that in the past year Juliana has made some huge gains, and I am very proud of all she has accomplished.  I'm just saying that the past 19.5 months of her life has taken a toll on her momma and her daddy.  We are mentally and physically worn out.  I am hoping that this 2 week break from school will help me to recharge for 2011 and all the appointments, therapies, and new doctors that we are scheduled to see.

A Good Visit...

I have been a patient of Dr. Merle Diamond's for over 18 years.  That means that for over half of my life I have been going to the Diamond Headache Clinic.  I was my parent's version of Juliana.  When I was 15, I started having headaches, but they weren't the normal "pop a couple Tylenol and feel better" kind of headaches.  When I had these headaches (we didn't know they were migraines at the time), I had to be in the dark with low sound.  My head felt like it would explode.  My parents dragged me to all sorts of doctors trying to figure out what was wrong with me- chiropractures, accupuncturists, neurologists, psychologists, etc.  Finally, someone mentioned the Diamond Headache Clinic (if only the internet had been as accessible back then, it would have made it easier to find help).

Ever since I started seeing her, Dr. Merle has always included me in on decision making for my medical care.  When I had a grand mal seizure from an allergic reaction and had to go on seizure medication for a year, she understood that I didn't like being on the medicine and got me off of it as soon as possible.  When I went away to college, she gave me her home email address so I could email her anytime I was having migraine problems or had medicine questions.  When I had my brain injury, she's the doctor who got the ball rolling on all of my tests.  With Juliana, I've emailed her my questions or asked for her opinion and she's always been honest with me.  She's even given us some names of doctors that may be able to help us get a diagnosis.

Today I had a "checkup" appointment with Dr. Merle.  Ryan took the day off and drove me downtown (sometimes I get injections that render me a bit useless- and I had a feeling that I would be getting one of those today).  As usual, we heard Merle before we saw her, which always strikes me as funny because you are in a place that deals with migraines.  Her first question was about Juliana, and we discussed everything that we have been through.  Then she asked me about my migraines, and while my gut instinct was to lie and say they weren't too bad, I knew she would see right through it, so I came clean and told the truth- that some days are worse than others.  That I have a headache every day, and a migraine at least 3 times a week minimum.  We discussed if it was stress related or if it was seasonal related (winter has always been my bad time) and agreed that it was probably a combination of both.  Then it came time for "negotiations".  She wanted me to go back on a specific medicine that I don't like.  I refused.  She tried to convince me to go back on it, if only for a month, because it does help my migraines and she doesn't want me in pain.  I refused, but then I gave her my reasons: it makes my mind fuzzy, it makes me groggy all day, I can't wake up at night and since Juliana gets up once or twice a night to eat I could fall down the stairs and get hurt, it makes my hair fall out and I gain weight.  The great thing about Merle is that if you make a good case for yourself, she respects your decision and doesn't push the issue.  We came to a compromise, and changed the doseage of a different medicine, and she gave me a shot to help with the migraine that I have been dealing with since Saturday.

This is how the medical profession should work.  This is how a doctor/patient relationship should be.  This is an example of an excellent doctor.  I love this lady, she is the best!

It's The Little Things...

Yesterday I had a really bad day.  I'm talking BAD.  Unfortunately, I can't go into it, but I'll give you a general idea.  I received a threatening email.  I did receive an apology, but it definitely started my day off on the wrong foot. 

Two things helped to turn my day around.  The first one was that when I brought the email to the school administration, I received their full support and they stepped in.  The second one was that two of my students (a brother and sister) stopped at McDonald's on their way to school (they were coming in late due to a doctor's appointment) and bought me an iced coffee because they remembered me saying that since I don't sleep much I've become addicted to McDonald's sugar-free vanilla iced coffee.

Sometimes it's the little things.

Encouragement...

This week basically sucked.  The Children's Memorial episode really upset me.  I still can't talk about it without getting really angry, so I just don't discuss it.  Juliana's therapies this week haven't gone that well.  She hasn't really cooperated, and that can be frustrating.  Yesterday she did have a good session for Occupational Therapy, which was good, she usually cries during that one.  Last night after OT we met with a nutritionist from Early Intervention.  It went how I expected: it was confirmed that we present Juliana a variety of foods, she just doesn't eat enough of them- she takes a couple bites and is done.  We met with the nutritionist for well over an hour.  When I looked at the clock it was 6:10.  We still hadn't eaten dinner, it was almost Juliana's bedtime, and I had wanted to go to Mom Connection which started at 6:45 and it was looking like I wouldn't make it.

We whipped up a quick dinner and ate it.  I texted a friend to see if she was going to go- I was going to use that as my decision of whether or not I was going to go.  She texted back that she wasn't going, so I told Ryan I would just stay home since it was already 6:30.  My husband, sensing that I really needed to go, said, "No, you're going.  You know other people there besides Sandy.  She's not even at your table.  You need to go.  I've got the kids covered."  So, I went.  I got there late, but I still got there.

The discussion last night was about encouragement, something everyone could use.  The cool thing was, before OT yesterday, I had received a card in the mail from Sarah encouraging me.  After the week I had had, the card made my week.  I'm glad I went last night.  It was nice to laugh, have fun, and not think about life in general.

Today, when I checked my mailbox at school, I had a large envelope from Western Illinois University.  I almost didn't open it.  Usually it's information about graduate school programs, and I don't want to go back to school.  I carried it up with me to the Science office and put it down on my desk.  After I opened the envelope, I pulled out a letter and a certificate.  The letter was from the president of the university.  The first paragraph started with: "I consider it a distinct honor to notify you that an incoming student at Western Illinois University, in an anonymous survey, has named you as her or his most inspirational teacher."  Wow!  Even if this is a mixup, it totally made my day, and if it's not a mixup, it's nice to know that I made a difference in someone's life.

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