Tuesday, August 8, 2017

Immunology and Vacation

We are back!  We had a lovely time in Seal Beach, CA and some nice visits with Andrew's dad and wife.  It had been 5 years since Ellie had seen them and she was just thrilled to see her Papa.  We tried to stay pretty busy and enjoy the gorgeous 80 degree weather which was a good 20 degrees cooler than scorching Austin.

The first day we went to the beach, but we stayed in the way back so she couldn't see in the ocean and want to go swimming.  She also spent time on the playground right on the beach, swinging to her heart's content.



So Disneyland.  It was an adventure and the first time that Ellie and I have ever been to any type of Disney resort.

We made the mistake of waiting in line for 45 minutes to get a disability pass.  A disability pass allows wait to go on a ride without waiting in the line.  For instance, say the wait is 40 minutes, you can go do something else and come back 40 minutes later to get right on the ride.  We did this specifically for Dumbo.  Ellie did not want to ride Dumbo.  Instead she wanted to ride the King Triton Carousel and the Circus Train a gazillion times. The wait times were not too long which was great for someone who has meltdowns, but we learned halfway through our visit that we didn't really need to wait at all or use the disability pass.  Ellie's stroller is actually a wheelchair.  That gives us access to the disability line and allowed us to hop right on the carousel and trains.  Apparently, this is for all the smaller rides.  The bigger ones, you have to have the disability pass.








Unfortunately, Ellie did not get to meet Mickey Mouse.  I am pretty bummed because I think she would have peed her pants with excitement.  She was pretty tired by the time we wanted to go to Mickey Toon Town I saw on the app that the wait was 35 minutes. You cannot use the disability pass or Fast Pass for any of the characters.  Andrew and I knew that there was no way she could wait that long. So yes, we went to Disney for a whopping 2 rides, but I am still glad we went.

Convaid Scout Wheelchair.  Goes up to 100lb.  Ellie's is purple.  Our insurance paid for it because 1. Ellie cannot walk long distances and 2. because she is a runner which is a safety concern.  


The following day, we went to this fancy smancy mall the size of a small town with stores like Dior, Armani, Michael Kors, etc. for the sole purpose of riding their carousel.  Can you tell that Bear loves the carousel?  She went on it 6 times and had a blast.




On our last day, we went to the beach up near the ocean.  That was a colossal mistake.  At first, Ellie Bear was quite content to play in the sand.  Then she realized that she was right by a lot of water and wanted to go swimming.  She didn't understand that, as per Infectious Disease, she could not swim in the ocean due to her cecostomy tube and possible immunodeficiency.  We ended heading back to the hotel room and used their swimming pool.  Ellie's idea of swimming is sitting on the edge and kicking her legs in the water.





A few hours after going to the beach, we get the call from Infectious Disease.  Her labs came back in early.  Great news! Her labs are mostly normal, well normal for Ellie (her CD19 B cell Lymphocytes [a type of white blood cells] are always a bit low).  That means she does not need IV immunogammaglobulin therapy!!!  So. . . she could have swam in the ocean.

On a side note, shortly after entering Disneyland, I managed to throw out my mid-back.  That area of the spine just below the shoulder blades.  It happened while I was transferring Ellie from her wheelchair to the toilet.  I started to get better and threw it out again on the way home due to trying to maneuver Ellie onto the toilet in the airplane bathroom.



The next two weeks are jam packed with doctors' appts - we now only have 4 since ID canceled- and back to school stuff.  Today, we see ophthalmology which should be fun because I have to tell the doc that Ellie still won't wear her glasses even with the atropine drops in her good eye.  Last visit, she said if this doesn't work, we will have to patch the good eye.  Riiiggggghhhhhtttt.  Because this stubborn child is going to leave a patch on.  Thursday is ENT and I am expecting that to be routine.  Yes, a routine appt!!! Next week is GI.  We plan to take her off the Protonix for reflux.  I am not sure that is going to happen seeing as about 30% of the time post enema, she throws up. This is new in the past 1.5 months.  She also had one day where she threw up twice for no obvious reason and then puked all over her iPad while in Seal Beach.  Next Friday is our new patient appt. with the Comprehensive Care Clinic. We have been waiting months for this appointment.  I am told that the office visit will be about 2-3 hours.  It should be fun.  This doctor will become Ellie's new pediatrician seeing as our really awesome, amazing, fabulous current one is no longer in our insurance plan.  Dr. B at the CCC, coincidentally, was Ellie's first GI specialist during the first 2 years of her life.  I am hoping that we can have a few playdates and make it to the neighborhood pool since Bear Bear needs to have some fun in her life..

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Sunday, July 30, 2017

Party On: Updates

Happy Summer!  We have 3 more weeks before school starts.  How about y'all?

We head out to Seal Beach, CA soon!  We have our trip to Disneyland planned and we anticipate seeing Andrew's dad and his wife.  We were going to meet up with a Facebook friend who also has a kiddo with Down syndrome, but that fell through.  It's a real bummer, but I am certain that I will meet her at some point.  After hitting over 100 degrees over the past few weeks, we are thrilled to experience the 70-80 degree weather during our vacation.

So, we found out that Ellie cannot go into the ocean.  Yes, a beach vacation and no ocean!  I talked to Infectious Disease and they said that because she may have an immunodeficiency and she has the cecostomy (which she is considering to be a wound/open skin), she is at risk for severe bacterial infections such as flesh eating bacteria.  Oh goody.  I would like to avoid that. So fun times in keeping her out of the water, but I think, I hope that she will be satisfied with just playing in the sand.  On Monday, we recheck her different WBCs, immunogammaglobulins, and pneumococcal antibodies.  The results will determine if she does indeed have an immunodeficiency.  I am betting that her B cell lymphocytes will just be a little low, which is her normal.  We won't get the results for 2 weeks which is why we are playing it safe.



Speaking of safety, Ellie refuses to wear a medical bracelet.  I have tried various kinds.  I got mySquareID which I put on my keyring.  I also, through Facebook, found these nifty seat belt covers that have a little pocket in the back for medical information.  Stitched on the front, I have "Nonverbal" and "Down syndrome".  The medical info that I have in the back pocket has emergency contacts #s, mediations, allergies, and diagnoses. I have a cover on her car seat, her backpack, and her stroller.  I was able to order these seat belt covers off Etsy.com from Seat Belt 911.



Finally, Ellie has been quite the toot.  She has been exhausted since June and the past few days have been worse.  I am really hoping it is a growth spurt or maybe just the ridiculous Texas heat.  I’m having to wake her up in the morning and that is sometimes after sleeping 14 hours.  She would come home after only 4 hours of summer school and say that she wants to take a nap, which she doesn’t end up doing but does lay on the floor.  She is going to bed early.  The other day, at the drop in daycare, they said she mainly sat there and barely played. The thing is, she does the irritable fatigue thing that little kids tend to do.  She screams and cries in the afternoon.  She’ll calm down for a little bit and then freaks out again around bedtime.  She will ask for juice, bread, Mickey Mouse, bath, etc and then scream “no” when we go to give it to her.  She loses it when we don’t give it to her even though she pitched a fit and said “no”.  This will repeat several times.  I am at my wits end.

Other than that, things have been pretty calm over here and hopefully they will stay that way.  I shall report back after Ellie's ID appointment on 8/16.

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Friday, July 14, 2017

Summer Fun, Pneumonia, Wonky Lab Results

It’s summer!  I hope that everyone is enjoying their break from school.  Ellie has been a cranky butt since school let out.  Every day she signs “school” and “bus”.  She is an emotional wreck.  Happy and smiling one minute while the next she is either crying or shouting  “no”.  I think that it is the lack of routine causing this mood instability or maybe it is the 100 degree heat or the moon is in mercury or something.  I have been trying to keep her busy, but unfortunately, a lot of our plans get canceled. 



Ellie missed most of the last week of school.  She had a junky sounding cough and after a few days, I got the bright idea to check her oxygen saturations using our pulse oximeter.  She was satting at 92% (normal is 97-100%).  That meant a trip to the pediatrician who diagnosed her with pneumonia and sent us on our way with an antibiotic.  The next day her oxygen saturations were in the 80s so this meant an ER visit.  Of course, by the time we arrived at the ER, her sats are back up to 92%.  The doctor said he heard crackles in her lungs which suggests pneumonia.  An X-ray showed mucus plugs in her lungs and an infiltrate.  He said it looked viral, but to continue the antibiotic and prescribe an inhaler which we never ended up using.  Two weeks ago, we saw Ellie’s pulmonologist for her sleep apnea and at night oxygen.  He took a look at her x-ray and said it didn’t look like pneumonia, but rather a viral lower respiratory tract infection such as bronchiolitis and mucus plugs.  He stated it could be a sign that she may develop asthma.  He told us to call if she needed to use her inhaler twice a week for a month.  Right.  I doubt that will happen seeing as she never needed an inhaler before, but I guess there is a first for everything.  When I got access to her clinic note, I see that he diagnosed her with mild asthma. What?  So now we can add another diagnosis to Ellie’s long list of medical issues.



Last week, we had to follow with Infectious Disease because some of her immunology blood work was abnormal.  Her B cell lymphocytes (a type of WBC used to fight infections) were very low.  We don’t know if it is because she recently had an illness or if the low count is the reason she got ill. They always run a little low, which is why we see ID yearly, but this time they were really low, hence why the impromptu office visit. She lost most of her antibodies to pneumococcus so we had to give her the Prevnar vaccine again.  We will recheck all her labs in a month to see if she built up a response.  I guarantee you that her B cell lymphocytes will be back to Ellie’s usually range.

We have been to our neighborhood a few times and she seems to enjoy it.  She will only stay in the splash area.  She seems to be afraid of the pool.  I am not sure why because she knows how to swim a bit - using arms, holding her breathe while under water, and coming up for air.  Still, she enjoys the splash area, which is why we are headed there in a little bit today.



Our school library is open for the summer on Thursday afternoons.  She has been very excited to pick out books and insists on “reading” them on the way home.  Yesterday she picked out a book on cockroaches.  The librarian said it is one of their most popular books.  I bet it is their grossest book!  I am not sure I can stomach reading it as it has really close of pics of those nasty roaches.  Of course, she won’t read them before bed.  Oh no, because I must read “S is for Sofia” every. single. night.  I have the entire book memorized.

We will be headed on vacation this summer to Seal Beach, CA.  It is a part of Orange Country and we will see Andrew’s dad while we are there.  We are going to brave Disneyland for one day as well.  I am excited and dreading it at the same time.  I have never been to any Disney theme park.  I bet it will be hot and crowded and Ellie will get cranky tired.  Nonetheless, I think she is going to freak out when she sees Micky Mouse!  Plus, doesn’t everyone have to experience Disney at least once in their lifetime?



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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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