What's new with Emma

Emma has been doing really well lately. She is attending the same school she did last year and is thriving at school. The crisis moments are getting farther and farther apart and it's giving her a chance to just be a kid. The other day, I watched her dancing with Abby and was overcome with emotion. I was so happy that she is getting moments like that, when I know so many other children with special needs don't. Every day is still hard in one way or another. Either her aggressive side comes out or Diabetes gets in the way or her minute by minute draining behavior will show up(food can't touch, blanket can't have wrinkles, chair has to be lined up just right, I could go on and on). These are the things that we are getting better at handling, they are a part of our "normal" life. I feel like the insulin pump has given her and our family more freedom and feel like we've adjusted to living with Diabetes. It's also helping her overall care, her last A1c came in at 8.2. which if you remember it needs to be 8.0 or below. We're getting closer! She still gets a lot of viral illnesses, but isn't getting as sick from them. She didn't qualify for the extended school year this year and I was really worried that she would regress. All summer long, I was shocked at how well she was doing. Behavior problems and illness were far and few between and I feel like her speech continued to progress. Things have been going so well that I decided to have her join the local dance group made up of individuals born with Down syndrome. She loves dancing with the Sparkly Pals and I love watching her. They had a performance this summer at the Hogle Zoo. Here are a few pictures.

The latest and the greatest with Miss Em

Easter morning

We almost made it this year, staying out of the hospital that is.  I was hoping we could keep her home a whole winter, but it's not happening this year.  A week before Easter, Em came down with a stomach flu.  It hit her on a Sunday night and by Monday morning we were losing ground with her.  She wouldn't eat or drink(always a challenge when she is sick) and her blood sugars were really high all night(loses a lot of fluid with this).  Normally, Em's sugars either run low with this kind of illness because she's not eating or they will plateau.  I had also given her Zofran around the clock all night and it was not working.  Throwing up is not good for her with the Nissen.  She was admitted in the hospital Monday morning for i.v. fluids and was discharged Tuesday morning.  It was really stressful trying to keep her hydrated through the night.  I felt a huge weight lifted once the i.v. was in.   It could have been a lot worse.  It's never fun staying there, but I was relieved she was in a safe environment since things can change so quickly with her.  She was a sick little girl, but was doing really well after she got hydrated.  She started eating and drinking, that is why we were able to come home so soon.  The countdown has started over, maybe next year... 

Her behavior is still really difficult most days.  Her and I have met with a family therapist and I have been feeling really good about some of the new things to try with her.  I'm understanding where her behavior problems stem from more and that alone makes it a little more bearable.  His speculation is that all of her medical issues have led to an attachement disorder.  From day one of her life she has had a difficult road healthwise.  Due to her birth trauma and chronic illness she wasn't able to fully attach and bond the way she should have, especially with me.  It's easy to see for me, all of her life I have had to respond to a lot of her needs and care with some sort of discomfort or pain(shots, therapy, etc.).  It's a little difficult for me to swallow because I'm the mom.  Moms are supposed to make things better, comfort and soothe.  Taking care of her in the way she needed has left her traumatized.  Jeff and I both have been traumatized with it all, it's only fair that she is too.  So when she is acting out or in a meltdown as I like to call it, she is feeling hyper-anxiety.  To make herself feel better, she tries to control or manipulate situations.  When I don't give in to her the feelings escalate, resulting in the meltdown.  It breaks my heart now that I better understand what is going on.  The good news is this is something that can get better, it's going to be a long road though.  I called the Utah parent center and was given some great advice on where to receive help, right now I'm currently trying to get it all figured out.  I wish she knew how much we love her.   

Isn't that picture of her above so great?  Can't tell she got out of the hospital a few days before, I love that about her.....

Family Links Conference 2009

A few weeks ago, Jeff and I attended the family links conference that is hosted by the Utah parent center.  It was awesome and we learned a ton.  I love going to things like this because it provides an environment where I feel like we fit in.  I always say that raising Em is liking living in a world inside the world.  It is difficult for us to relate to people around us anymore.  Not complaining, but it's true.  The keynote speaker was Dr. Robert Brooks, his session focused on from being stressed out to stressed hardy.  I really needed his speech!  I think he was great, he was funny and also had some great advice.  Check out his website.  We attended the conference with some friends of ours who are also raising a child born with Down syndrome.  We all split up and went to different breakout sessions to get as much information as possible.  During the last breakout session, we all met up again and went together.  It was a panel board of people all born with Down syndrome from age 8 all to way up to 54.  Two of them were even married, and were such an inspiration.  They live on their own and have a wonderful life, I was given hope for Em.  The audience was able to ask questions and we received such valuable information straight from the mouths of those just like our children.  I loved when they were asked about what makes them happy and what makes them sad.  I was on the verge of tears the entire time because of the gratitude I felt in experiencing something so amazing.  Emma blesses our lives in countless ways.  What an experience to remember.  

Cardiology appointment

A week ago today, we met with Emma's Cardiologist for her annual exam.  She has this because she had pulmonary hypertension when she was born.  I was a little nervous because last year they discovered during her echo that her aorta was a little dilated.  Emma was pretty well behaved this time and handled it all like a pro.  She always gets scared at first, but after some coaxing and loves she calms down and cooperates.  Surprisingly, everything came back normal.  There is no evidence of any hypertension and her aorta is no longer dilated.  Last year her Dr. didn't know why her aorta was dilated, it was kind of a strange thing.  I was SO relieved that it had resolved, I almost didn't know how to react to good news.  For so long now we go to appointments and always have an issue to deal with.  The cardiologist decided to discharge us from the cardiology unit.  He wants an EKG done every year, we'll just add that to her yearly screenings that her Peds doctor orders.  He said they wouldn't need to see us anymore unless her EKG shows anything abnormal.  It was really great to walk out with no referrals, prescriptions, or future tests to perform.   

THE MANY FACES OF OUR EMMA

Lisa's favorite (signing 'Mom')

Jeff's favorite (signing 'Dad')

'Candy'

Candy, again.  (All too often)

content

scared

showing off

Take this!

hmmmm......

bored

hmmmmm....again...

Who, me?

Can't touch this!

Runaway

Thursday, Emma's Principal called me after Emma got home from school.  She wanted to tell me about something that happened at school that day that was concerning to her.  While Emma's teacher was at lunch, Emma followed one of the class aids out while she took one of the students to therapy.  The aid that left didn't know that she followed her and the other aid who stayed in the room didn't know either.  Someone else at the school found Emma about 10 minutes later, she had found a couch and was hanging out.  Emma has a tendency to run off now and I do have to keep a close eye(or grip) on her.  She wasn't hurt or anything, but she could have easily gone outside and the school is on a busy road.  I appreciated the phone call and I wasn't too concerned about it.  I doubt it will ever happen again because the Principal told me that there was already a gate on the door and the window and a rule was established to verbally communicate who they are taking and where.  I guess Emma was 1 of 3 runaways that day, two went out the window.  I felt bad for the Pricipal it sounded like she had a rough day, I was impressed with how she handled the situation though.  We still love her school.     

A1c and Progress report

This Tuesday was Emma's A1 c appointment.  We meet with her Endocrinologist every 2-3 months.  Every time I leave this appointment I feel just as overwhemed as the day she was diagnosed.  They run a test called an A1c, it represents the average glucose in her blood over a 3-4 month period.  It provides a lot of information to help manage her diabetes better.  A1c goals for kids Emma's age(0-6 years)  should be below 8.5%.  This time she rang in at a 9.1, I was glad that it had come down from the previous appointment(she was at 10.0).  With that being said, it really isn't a good number.  I don't like that her result lands on the scale where you see Dangerous.  I would love to see it in the Excellent control range and would even take Fair control.  We have only received a fair once or twice and never ever see excellent control.  

This is an appointment that I dread.  Besides the A1c, we also meet with the Nurse/Diabetes educator followed by the Dr.  They have me fill out paperwork that provides current dosing information.  They download her pump and glucometer into a computer system that prints out a summary of her imformation. It adds that info into charts and then we can use those averages and readings to look for problematic times or meals that might need tweaking in her insulin doses.  There is no way a teenager could fake taking care of their Diabetes, it all gets recorded.  So if they weren't doing anything, the downloads would be empty.  I kind of feel bad that these kids are living with that kind of pressure.  

They ask me all sorts of questions and while I attempt to answer them, Emma is either emptying all the cabinets out or hitting and screaming.  Saying it is stressful is a huge understatement.  It is always frustrating for me because they really don't know why we can't get better control.  I always feel like it is my fault, maybe I'm not carb counting accurately or maybe I am getting too lenient.  Deep down inside I know I am doing at least enough.  I also have good reminders, like on Monday, her blood sugars ran in the 100's all day(I did nothing different than any other day).  They can tell her blood sugar is being checked enough and that we are giving her plenty of insulin in a 24 hour period.  Her numbers are just depressing.  Ben, one of the educators, reminded me that I am doing a good job.  Maybe he could tell that I was fighting back tears the entire time(I always am).  Every time we're there he kind of shakes his head when he looks at her charts and numbers because he doesn't know what to do.  We both spent a lot of time looking for patterns.  He explained to me that they will usually show up at the same time of day or on the same day of the week or at the same meal.  Not Emma, there was no distinct pattern.  Her numbers were all over the place.  I mentioned to him that I noticed I was getting better numbers when I put her pump site in her arm(we can use the back of the arms, the top of her fanny, her chuncky thighs or her stomach).  He still wants me to rotate through the site areas in spite of that though.  We both kind of decided that maybe she just wasn't getting enough insulin.  Dr. Donaldson came in at that point and came to the same conclusion.  He ended up switching everything.  He is having us use a new glucometer and a new brand of test strips.  He increased her basal rate, that is the amount of insulin she receives about every 10 minutes.  He increased her bolus amount, the insulin she gets for her high blood sugars.  He increased her carb ratio(meaning she gets more insulin for the carbs she eats) she is at a 1:20 ratio now.  She receives 1 unit of insulin for every 20 grams of carbs that she eats.  I think it is a pretty agressive dose, I have met grown ups with a 1:10 ratio.  Since insulin absorption is the best on the first day of a new pump site, I have to now temporarily lower her doses 20%.  It sounds more difficult than it is, there is a feature I can use on the pump.  I program how long I want it and how much I want it lowered.  One more thing I have to remember in the day, if I don't she could have low blood sugars that first day.  It is interesting the things we have to do to "fine tune" her Diabetes management.  I have seen good blood sugars since the appointment, but I have also had way more lows.  If it doesn't level out, her doses will have to be tweaked again.  

Dr. Donaldson is using a new system to help the parents manage better(at least the ones who are on insulin pumps).  I spent an extra hour on Tuesday getting set up and learning what to do.  I wasn't too thrilled about having to stay longer, but I am excited for a better change.  Until now, when her blood sugars were giving me problems, I have had to chart everything for a day or so and fax it into them.  The nurses or the Dr. would review it and then fax the changes back.  It has presented problems for me because it is not a fast process and like I have time to do that on top of everything else.  Now when I need their advice, I will use something kind of like a usb port to download the pump into the program.  I can call the office and they will have all the info they will need broken down into log books and summaries.  So much less work for me(two weeks worth downloads in like a minute) and I think this will be a valuable tool in them helping us.  Doesn't this information make your head hurt?

I received Emma's quarterly report for her Occupational Therapy goals yesterday.  All 5 are brand new goals as of this year.  They are 1. will imitate and progress to copy from a visual reference the pre-writing lines and shapes while using a tripod grasp on writing utensils.  2. Will find 10 objects hidden in a soft resistive theraputty in under 5 minutes independently.  3.  Will match the letters of her first name and then trace her name with correct letter formation.  4. Will use adaptive scissors to cut a theraputty snake into 10 pieces, snip a straw into 10 pieces, snip a strip of 1" wide paper into 10 pieces, and progress to cut along a 6" line.  5. Will button and un-button on a dressing vest in under 4 minutes independently.  The performance measurements are (G)=good 75% or more accuracy.  (F+)=50-75% accuracy.  (F)=fair 50% accuracy.  (P+)=25-50% accuracy.  (P)=poor=25% accuracy or below.  For goal #1 Emma received a P+.  2. She received a P+.  3.  she received a P.  4.  she received a P.  5. she received a P.  A few years ago I probably would have spent the night crying knowing that she scored at the very bottom.  But, I have learned to look at her progress with the right perspective.  I can't compare it to 'normal" kids, that is depressing.  I definately can't focus too much on the actual score.  As long as she progresses I don't care where her marks come in at. I am pleased with the progress I am seeing in her.   

Speechless and T-cell results

It's true, I am finally updating about Emma.  Things have been interesting and I literally have been left speechless.  The results for the stomach issues came back normal.  Are you thinking what?  Don't worry, we did to.  It is a long story that honestly I don't know if I have the energy to fully explain.  The short version is that the gastric-emptying study came back at 27%.  Anything under 30% is considered normal.  When I met back with Dr. Downey, miraculously he wasn't worried about her stomach anymore.  To be honest he was kind of a jerk and in a way made me feel like an overbearing, worried parent.  He was the one who got "specialist" on me and sent us off on a completely unnecessary rollercoaster ride.  Originally, I was just wondering IF I needed to be worried about the reflux that I was seeing.  He made no mention the first visit(or really ever) that it was still normal to reflux 8-10% of the time after a nissen.  At the follow up appointment however, he made it known like I was some sort of idiot.  The appointment was a battle between him and me and actually got pretty uncomfortable.  I felt bad for the intern.  I wasn't rude by an means(I wish I had it in me to tell him off), but I didn't sit there and take his crap.  The best part was when he told me he didn't even think she was refluxing.  I am so glad he knows her, since he sees her once maybe twice a year(Did you pick up on my sarcasm?).  I wonder what he would call the little puke spots that I have to scrub out of the carpet?  I'm pretty sure he knew I was not happy by the end of the appointment and he tried to make amends(it so didn't happen).  I didn't even make it out to the parking lot before I burst into tears.  He has no idea the way he messed with me.  Since day one, the responsibility I feel over her is indescribable really.  I would do anything for her and I have learned that if I am noticing a problem it is better to act fast than to wait it out.  I don't care if he is one of the best surgeons in the country, it would take something BIG to go back to him.  This isn't the first time we have faced "possibilities" that turned out to be nothing, but this was by far the worst experience I have had so far with a Doctor.  I have since gotten a few other opinions and feel like the reflux I am seeing isn't a problem unless she starts having symptematic problems(pneumonia).  Sigh.............................. 

T-cells

The t-cell function ended up being normal in her immune system.  She doesn't necessarily have a normal immune system, but her t-cell function is normal.  I am relieved that overall everything has turned out to be okay with her.  It isn't fun to think about the worry and fear we were facing, but it really doesn't matter knowing that she is okay.  We will move on from this and just keep going.  I am sure it won't be the last time, we have "scares".  

Doctor appointments and CPAP

A couple of days before Thanksgiving Emma had a follow-up appointment at PCMC (Thanks Erika for driving us)with Dr. Kang.  Dr. Kang is her pulmonologist and also follows her at the sleep clinic at Primary's.  We finally have gotten Emma to tolerate her CPAP mask long enough to move on to the next step.  I discussed some of my concerns with him about the mask because it didn't fit her good.  So, he decided to change her to a full mask which covers the mouth and nose.  I feel it is a good thing especially since she is a mouth breather(It's a Ds thing).  He increased her pressure a little bit and added oxygen with her CPAP.  The next step is to schedule the sleep study when she handles the mask with pressure for at least 4 hours during the night.  At that point we will head up to Primary's for yet another sleep study to monitor her levels during the night while on CPAP to adjust her pressure and oxygen to optimize her breathing the best they can.  Emma is doing really well and is tolerating it all night she just won't wear it 2 nights in a row.  A few nights  ago she started to get sick of it and was fussing in the night.  I decided to not push my luck that night and switched her to the oxygen cannula.  As soon as that mask was off she practically dove into the pillow and actually sighed with a smile on her face.  I have never seen a little girl enjoy a pillow more in my life.  I wanted to cry for this little girl who is now being robbed of even soft pillow joy.  On the bright side, she doesn't have to wear the tender grips(they kept her from ripping out her cannula) on her cheeks anymore.  Dr. Kang also expressed his concern with how many current issues she has going on.  He advised me to consider meeting with an immunologist and to look into having her immune system tested.  The next morning was her yearly well child check.  I discussed it with her pediatrician and he then called the immunologist at Primary's.  Later in the day, her pediatrician called me back and ordered a bunch of tests that the immunologist recommended.  I guess they are mainly looking at her t-cell function.  I don't really know a lot about it but we went ahead and took her in for the testing.  It was good timing because she always has a bunch of screening tests each year around her well child.  Her thyroid is always checked and she is always screened for luekemia since kids born with Ds are at risk for hypothyroidism and leukemia.  We took her into the lab the night before Thanksgiving so hopefully we will hear something back soon.  We meet with Dr. Park her E.N.T to follow-up after the ear tubes this coming friday.  They are going to check her hearing again and then we will see if these tubes are staying in.  In a couple of weeks we are meeting with Dr. Downey to discuss her gastric emtying study and stomach issues.  We are very anxious/nervous for that appointment........

Her first night with the new mask

11/26/08

You can see the oxygen tube with the green cap connected to the main tubing

We thought it was funny that she was grabbing

 the tubing just like she does the nebulizer

She likes dirt

On most days, Emma is just Emma to us.  We don't see her physical characteristics of Ds very often.  On Saturday, when she was playing in the dirt, I saw it in her.  I just had to capture how cute she looked, especially how she curled up her legs!  It is moments like this that are very surreal to us.

She was cooking-of course!  Anyone who knows her knows that pretend cooking is her true love right now.

The Dan Peterson School rocks!

Emma's annual IEP(Individualized Education Program) was held the beginning of November.  It was to discuss how her disability affects her involvement and progress in the general curriculum and to go over her healthcare plan.  We went over her previous goals and I found out she met several goals throughout the year!  I was pleasantly surprised with her new goals already set for the year.  The team went over new things I can work with her on at home.  Rainbow writing, tracing(her name), play dress.  I love LOVE her school, they are right on target with her.  I appreciated that her teacher really knew her and knew what she needed.  The new principal (Kim Wong) was fantastic and really encouraging to me.  I think that the therapists there do an amazing job.  I feel so much support from this school and KNOW that I made the right decision placing her there.  I was concerned that she would be lacking social interaction at this school.  So, I thought it was very interesting that her teacher commented to me that Emma seems to thrive being on top(She is the only one in her class that is ambulatory).  It was very validating to hear that she is in the right place(at least right now) to learn and progress.

They are so lovable!

I've been told countless times that people born with Down syndrome are so lovable.  Unfortunately, Em is sick all the time and can't show us that side very much(sickness=high blood sugar=grouchy).  Today, however, was a rare treat for me.  The morning started off a little rough, she woke up with a cold and it of course was wreaking havoc on the diabetes(that is nothing new).  After her nap she became so lovable with me.  That hardly ever happens since I am the one usually taking care of her medical care, pushing her in home therapy or having to disicipline her during a "meltdown".  I was in heaven, she was hugging and attached to me all afternoon.  It amazes me how her amazing spirit manages to shine through, at times, all of the crap her body is put through.  I can't believe how lucky we are to have her in our family!!!  

Keep your fingers crossed that she won't get pneumonia from this cold...................

Blindsided

We've had some new developments with Emma this week.  We've been worried lately about Emma's nissen and whether or not it was still intact.  Over the last few months, she seems to have been struggling with reflux again and has had some other symptoms that have caused concern.  So, feeling like over-paranoid parents, we scheduled a check up with the doctor that performed her nissen surgery.  Anytime there is concern about a nissen being intact they schedule an upper GI to see what's going on inside.  During the procedure (while we pinned her down) the radiologist was telling me that he didn't think the nissen was still intact.  Shortly after, we met with Dr. Downey, her surgeon.  He was quite surprised by what her film showed and explained that her stomach was "HUGE" as he put it.  So big he couldn't even see her nissen, which is probably why the radiologist thought it wasn't there.  We don't exactly know for sure what is going on yet, but the doctor thinks there is a good chance that this might be a complication of her diabetes called gastroparesis (partial paralysis of the stomache).  He thinks that maybe what we're seeing is in fact reflux, but probably caused by backed up food in her stomache and that the nissen is probably still intact and the reflux is just happening up through her nissen.  He's never personally seen this on a child before, but thinks there is a good chance of it because of all of her other issues she has going on.  There are other possiblities, too.  It looks like there is a good chance she will be having a G-tube put in.  Fortunately it won't be for feeding her, but more of a means to vent her stomache of trapped air.  He put a rush on additional testing which is why we spent the afternoon of Halloween at Primary's.  They did a digestion study which shows if she digests food normally.  They fed her some radioactive egg and then watched it in her belly for an hour to see how quickly it passed.  Supposedly, anything that comes back under 35% is normal.  Hopefully we'll find out soon....

Sleeping Angel

This was a really hard day for Emma.  She had a lot of behavioral problems and some aggressiveness throughout the day.  She was so exhausted at night that she crashed on the floor before we could get her to bed.  

It's moments like this that help us remember how sweet she really is and it keeps us going.

Rough night with sugar control

Unfortunately, this is what we wake up to most mornings. We have had a difficult time controlling Emma's blood sugars at night. When her sugar levels are high, her body tries to flush out the excess sugar by pulling fluids from her body. This causes several problems: risk of dehydration, lots and lots of pee (she's not potty trained yet), and (less important) who likes to change sheets every day?

Total saturation. This is why we purchased a special pee-proof pad.