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 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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A mask for kids with Down syndrome

Do you hear crickets?  Yes, we are here!  We are alive!  We are safe and healthy!  We haven't been inside a restaurant or store since m...