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.