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.

Fast forward to now

We are still trying to get Emma's blog caught up and include lots of info and pics from the benefit fair.  But until then, we want to keep up with her current stuff.  

Benefit Fair

Emma was born with Down syndrome and within a year developed juvenile diabetes. Her days are filled with endless monitoring and continual struggles. On July 19th, 2008 from 10 a.m. to 4 p.m. we will be having a benefit fair at Wines Park (500 N. Center, Lehi) in behalf of Emma to help her family cope with the medical costs of major surgeries, medication, and doctor appointments that have buried the young family and will for years to come. A non-profit organization called Endless Hope Foundation has been started on behalf of Emma and donations are accepted at any Zions Bank. If you're interested in helping, please leave a comment with a way you can be reached. Thank you.

Team Emma

Having a child with special needs means that you raise your baby with a whole group of people and specialists. It really stinks! We selfishly want her all to ourselves. Emma's first team members: Kids on the Move (early childhood intervention services). Therapists started coming to work with Emma at our house (during lock down) when she was 2 months old. Emma had to do physical therapy, occupational therapy, speech therapy, and classes at the KOTM center all to help her overcome her developmental delay. Kids on the Move has been awesome! Unfortunately, she was only able to stay there until she was 3 because the school district takes over at age 3.

Emma's second team members: Doctors, lots of them. Pediatrician, Pediatric Endocrynologist, Pediatric Opthamologist, Pediatric E.N.T., Pedicatric G.I., Pediatric Surgeon, etc. These are just the main ones that Emma sees on a regular basis.

Emma's third team members: Family. Everybody in the family just adores little Emma. The difficulty comes when Mom and Dad need to take a break and we can't just leave her with any babysitter. Fortunately, our family has been willing and made a lot of effort to learn her care so they can help out.

A Big Day for Emma

Getting ready for surgery

February 2006. Emma underwent major surgery combining the nissen fundoplication with the removal of her tonsils and adenoids (T&A). It is very risky to perform surgery on a child so young (she was 15 mo) with diabetes, so they were able to arrange both surgeries and multiple doctors on the same day. The T&A was to take place first, followed by the nissen.

Surgery preparation consists of fasting for several hours prior to anesthesia (everybody has to do this), but this was not an easy task for a baby with diabetes. It was quite a stressful night before the surgery trying to maintain stable blood sugar because they couldn't operate without that. Has anybody heard of stable blood sugar in an infant with diabetes? NO. And without food it is even more impossible. Anyway, we did our best, but failed as her blood sugar dropped in the pre-surgery waiting room. So, they had to hook her up to an IV bag with sugar in it to help stabilize her which made the wait even longer (with a baby that hadn't eaten in hours!).

Surgery went very smooth. Recovery, however, is another story. Typical Emma style, she kept us hopping post-surgery. She went straight to the Pediatric Intensive Care Unit (PICU) as a precaution because surgery is stressful on the body, and stress makes diabetes difficult to manage. So, off she went to the PICU to be taken care of and monitored. Her diabetes went into a sky high tailspin which made her really sick on top of being miserable from the surgery. Her blood sugar was so high, it wouldn't even register on the meter (glucometer). This meant she was at risk for developing DKA again. Fortunately, she only had to spend (a long) 24 hours in the PICU, after which she improved enough to be transferred to a regular recovery room. She spent about a week in the hospital all together, which wasn't too bad, but we were ready to be out of there by the time we left.

In the regular recovery room, such a tough baby

This is how she was a lot of the week

Her recovery was very difficult because she had both surgeries at the same time, not to mention she didn't want to eat (sensitive from the T&A) which made her diabetes a nightmare to control. Her food choices were limited because she couldn't go directly back to eating solid foods after a nissen, she had to start with liquids and gradually work into solids again. The worst part, though, was that she ended up getting a stomache bug that made her want to throw up. A lot of times we take Emma to the hospital for one thing, and come out with another..... Anyway, this was the worst thing that could have happened after a nissen surgery because she couldn't throw up, but her body wanted to. It was so sad to watch her struggle through that. Nissen surgeries don't last forever, either, and they had warned us of the possibility of the surgery being ruined from prolonged stress on the site from the body trying to throw up. Mom came home with it, too, so the first few days after coming home were truly a nightmare.

Closer to going home

A few weeks later, Emma bounced back to her normal self, again showing us how tough she really is. In spite of how awful the nissen makes "the throw ups" for Emma, it has been amazing at controlling and helping her reflux.

A Niss-a-what?

At the same time as the sleep study, Emma's reflux problems kind of came to a head. It started when she was a baby, and they wanted to wait for six months to see if she would outgrow it. She didn't (surprise...), so the next step was medication, which she was on for a while. In spite of the medication, she was still having problems, so they did an upper GI test and a biopsy of her esophagus. These tests helped determine that she needed to have surgery to help reduce the acid, because the medication wasn't doing enough. This surgery is called a Nissen Fundoplication (a big fancy name that means surgery to stop reflux, it also means you can't throw up your cookies anymore).