Monday, May 22, 2017

Just Chilling

If you have been reading this blog for any length of time, you know that when there is a big gap between posts, it is because nothing major is going on.  I am happy to say that things have finally calmed down.  Oh we still have doctor's appointments and therapies, but things are good.

Since Ellie has switched from the FCC classroom from the FAC room, she has been doing well. In fact, the teacher has not seen any challenging behaviors.  We all keep saying "just wait".  I don't know why she has stopped shirt pulling and pushing as she is still doing these things in therapy waiting rooms.  Maybe because she gets more attention as there is another aide in the FCC room?

She is doing so well that she received an Eagle Pride Award at school.  She was pretty excited - mainly because she got a piece of paper.  Andrew and I are very proud of her.  At times, it seems that the whole focus is on her negative behaviors and regression.  It is good to see her rewarded for her good behaviors and accomplishments.

Ellie had a dance recital this weekend.  This is with the 2dance2dream charity.  Studios around Austin offer up studio space for a free dance class for children with disabilities.  The older students are act as volunteers to provide more one-on-one support.  I would love to tell you that Ellie danced.  She did not.  She stood there and allowed the volunteer to stand behind her and move her arms around. Oh she did do a bit of jumping.  She also sat on the stage for half of the dance and attempted to crowd surf twice. This is usually how it goes.  She has two recitals - the studio recital (in this case Evolution Dance) and then the 2dance2dream recital.  For one she will do most the dance and the other she will attempt to run away and throw herself on the ground.

I think in my last post I mentioned that Ellie had high blood pressure.  Last month, we went to nephrology.  Of course her blood pressure was completely normal.  The first normal reading I had seen in a year.  Our 1 month follow up was this week and again it was normal.  Figures.  So Ellie doesn't really have high blood pressure and we can finally cross one specialist off our list of people to see.

Glasses.  Oh the glasses.  It isn't going too well.  I can get her to wear them in 5 minutes increments.  As in she wears them for 5 minutes and then I have to tell her to put them back on.  This will go on for a 1/2 hour and then nothing I say or do will get her to put them back on.  They have the little strap in the back and she can still get them off.  I am not sure what to do.  Just keep putting them on her and hope she gets used to them?

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Tuesday, April 18, 2017

Why I let my 7 year-old carry a blankie

My daughter was given this pale pink lovely as a gift.  Angel Dear lamb.  She loved it.  She actually still loves it.  She never took a pacifier.  She never sucked her thumb. Yet, she latched onto that blankie and chews it.  We have multiple blankies.  All  are the same.  Only Ellie realizes that they are not the blankie.  Her blankie is now pale grey and nasty.  I have 2 other blankies that she has deemed acceptable.  Also grey and well loved.  One is constantly in the wash.

She is 7 years-old and still chews on the the lovey.  She sleeps with it.  She takes it to doctor's appointments and it comes with us to restaurants and outings in her backpack which also holds diapers, wipes, and the iPad.  In public, she has blankie, but she doesn't chew on it.

I was one of those parents who was going to be all "alright, she is 3 years-old, cut the ends off the pacifiers!".  Yet, 7 years later, I still let me child suck on a blanket and take it out in public.  The things is, I. don't. care.

Ellie also has a sleep disorder, she has great difficulty falling back asleep.  She used to wake up sometime  between 12:30-2:30am and not fall back asleep until the following night.  One of the things that soothes her and calms her for sleep is the ratty lovey.  Again, who am I to take it away?  After all, mama needs some sleep too!

I don't really care because there are more important things to get worked up over. Never mind that my daughter is just now developmentally at a 3 year-old level.  My daughter has been under anesthesia 14 or 15 times (yes, I have lost count) for some surgery or medical procedure or other.  She has been hospitalized twice in the last year.  ER visits.  A least one appointment with a specialist visit each month.  We have 3 last month.  If her blankie gives her a bit of comfort, who am I to take it away?

So while my daughter may be 7 years-old and lugging around a blankie, I have decided to focus on other things.  On more important things.

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Tuesday, April 11, 2017

It is always something

I feel like every other week, there is something going on health-wise with Ellie.  Yesterday, we had our follow up with urology.  Ellie was quite naughty.  She has this thing where she throws things off tables and giggles.  She also throws things off exam tables like her iPad, which is now cracked.

We discussed Ellie's urinary issues where she strains to urinate and then may pees in her diaper 20 minutes later.  We also discussed her urinary retention issues.  There are a few options.  None of which I am thrilled about.

Someone will only keep her glasses on in 5 minute increments.

The first option is to put her on the cath program.  Essentially, we would have to catheterize her 3 x day.  This is where you take a catheter (a tube) and insert it through the urethra into the bladder to allow urine to flow out of the tube.  Obviously, this is not a good option for Ellie.  It would take at least 2 people to hold her down while I catheterize her.  Totally not happening.

The second option is a vesicostomy.  This is where you bring the bladder to the surface of the stomach to allow urine to drain.  She would have to wear a diaper to catch the urine and it would mean another surgery.

Fortunately, Ellie's kidneys, while small, are looking okay on ultrasound.  So I decided that we need to go with a wait and see approach.  Ellie will continue to get renal and bladder ultrasounds every 6 months.  If it starts to look like there is kidney damage, we will have to look at those 2 options.  I figure that her kidneys have been looking good for the past 2 years so they should continue to remain healthy.

We also were referred to nephrology (kidney doc).  Like we don't see enough specialists. Over the past several doctors' visits to specialists, Ellie's blood pressure has been high and she is on clonidine which is a blood pressure lowering medication that helps with sleep.  In children, aside from rising childhood obesity, blood pressure issues are related to the kidneys.  Surprisingly, we already have an appointment for next week. I can't believe we don't have to wait months to be seen! I don't anticipate any kidney issues and I imagine they will just monitor her.  Fingers crossed!

I was really hoping for a few months of calmness, but I guess that is too much to ask for.  I am feeling down about all of this.  Ellie always has something going on.  We just cannot catch a break.  Out of all of these health issues, only the sleep apnea is related to her having Down syndrome.  I do not know why she has all of this, but I feel bad for her and I am sick of it all. Fortunately, most of these issues are minor and she is relatively healthy.

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Wednesday, April 5, 2017

The Missing Cecostomy Tube

Oh Ellie Ellie Ellie.  Life is never boring in the Theurer household.  It is always something and that something can usually be traced back to the Bear.

This past Sunday, Ellie decided to remove her cecostomy tube.  She went in her room for one minute and walked out into the kitchen completely naked, minus the tube.  I about died.  This of course necessitated a trip to the ER where they are to insert a Foley catheter (a urinary catheter) into the hole to keep it open.

The thing is, we couldn't find the tube.  I mean she had to have just removed it.  Right?! Maybe.  Did she remove it earlier and we just didn't notice?  We checked her clothes, all the rooms of the house, drawers, the trash can and nothing.  How did it disappear? Also, how she get this tube out without any pain is beyond me.

My parents were visiting so it was mom, dad, Andrew and me all accompanying Ellie to the place of germs.  I discovered a few things: 1. a cecostomy is so rare that the docs had never heard of it; 2. it was up to me to educate them on what a cecostmy is, what the tube looks like, what size catheter to use, and how far to push it through the hole. That being said, they were really good about contacting the radiologist on-call.

It wasn't a bad experience.  For mild "emergencies" you can schedule an appointment.  Yes, an appointment at an ER.  They took us right away.  The doctors saw us right away.  They placed the tube right away.  The X-ray confirmation occurred quickly.  Then we waited another 3 hours.

Sorry for the gross picture.  This is when she had the infection.
Anyway, this is what the tube looks like outside the abdomen.

The normal protocol for when kids pull out their cecostomy tubes (apparently this is relatively common according to interventional radiology [IR] ), you place the catheter and then called IR the following morning to get on the day's OR schedule.  The ER docs decided they wanted her on the schedule before we left the ER.  At first they thought they could do it that day through fluoroscopy.  Then they realized that they were not sure they had the correct size tube.  Then they worked on getting us on to day's surgery for Monday.  They got it all worked out.

Monday, I call IR and request that they double check to make sure they have the cecostomy tube in the correct size.  Apparently, the tubes were under lock and key over the weekend which is why the ER docs couldn't figure it out.  The tubes are always in stock according to IR.

I don't know why she was so excited.

Day surgery went well.  We have decided to keep her tube covered with heavy tape and gauze and to deal with the skin issues that will arise because of bandages.  The IR nurse gave us an abdominal binder to also cover the tube.  I cut it down to size and it goes from her lower ribs to her hips.  Ellie does not seem to mind this.

I am anxious and paranoid.  How are we going to keep this thing in?!  My thought that if it comes out before a year is up, we should just let it close and I talk to GI about the Malone procedure instead. The Malone procedure involves bring the appendix to the belly button and then you catheterized the belly button.  The enemas would go through the catheter.  There is no button, no equipment.  I will be squeamish.

As for where the tube ended up . . . well let's just say Sophie dog had it in her mouth the following morning.  Yuck!

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Wednesday, March 29, 2017

IEP Meeting, Behavior, Vision

When I last left off, I talked about Ellie's regression and the need to move her into a different classroom setting.  I know that it needs to be down.  That it is best for Ellie at this time, but I am just not happy about it if that makes sense.

Last week we had Ellie's IEP meeting, which was completely anticlimactic seeing as I met with Ellie's Functional Academic Class [FAC] teacher twice and her new Functional Communication Class [FCC] teacher.  It was more of a formality - sign the paperwork.  I am really glad that I met with the FCC teacher in advance.  I felt so much better afterwards.  We discussed goals and she showed me in detail how she will teach Ellie and help her to accomplish her goals.  I think that this move will be good for her.

I was, however, not happy the decrease in inclusion time.  In FAC, she would spend 30 minutes with the 1st grade and then specials (art, music, and PE).  In FCC, she loses most of that. She does get reverse inclusions where they bring a typical kid in from the 1st grade to be with her for about 30 minutes. I don't really think that counts, in my opinion. The reason they are taking away inclusion time is because "with her behaviors, she requires too much redirection and is not getting much out of it".  My concern is, how can she learn appropriate social behaviors if she cannot be around and model herself after typical kids?  We did negotiate and decided that she can float into FAC for announcements, lunch, and recess.  With recess, she will remain with the 1st and 2nd grade class, which is good because there are 4 girls that love to play with Ellie.

Rather than wait until the next school to move Ellie to her new classroom, we decided to transfer immediately to the FCC room.  So on Monday she started FCC and I am told that she is doing well.  Minimal behavioral issues.  I think that I just jinxed her!

Two weeks ago we started weekly Applied Behavior Analysis [ABA] therapy in hopes of building up Ellie's social skills and working on her problem behaviors.  She has some 1:1 time with the behavioral therapist and some time to be with other kids.  I have been informed that she does really well at following directions.  Humph!  I wish she did that at home!

At the recommendation of the ABA therapist, we took Ellie for an autism evaluation yesterday at neurology.  We learned that Ellie has bad ADHD.  No kidding!  The doctor said that while she has some autistic-like behaviors, which is common in kids with Down syndrome and developmental delays, she does not have autism.

I recently ordered the book Supporting Positive Behaviors in Children and Teens with Down Syndrome.  I am hoping that maybe I can learns some tips to deal with Ellie's behavior and maybe gain some understanding.  I shall report back after I read the book.

We went for our annual ophthalmology appointment on Monday and learned that Ellie has great difficulty seeing out of her right eye.  It crosses a lot.  So we have the great pleasure of trying to convince Ellie to wear glasses.  I am wondering how much her poor vision has affected her school work?  Is she acting out more, trying to escape work, because she cannot see the learning materials?

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