Spring break in the hospital, bummer

The kids spring break started on Friday, March 14th.  It was a beautiful day so we picked up one of Aidan's friends and took in a park all day.  Saturday was equally as nice, if not nicer so we again took in a park for several hours.  The girls wore themselves out on the playset while Jason and Aidan practiced soccer skills.

By late Saturday night Alayna was running a mild fever.  The fever continued for the next few days while adding in a lovely middle of the night cough.  I was sure she had croup so didn't run her to the pediatrician.  By Tuesday she was perking up and not running a fever anymore and we were making plans for fun activities for the rest of spring break.

However, Wednesday morning brought a lethargic and fever ridden girl.  I called our pediatrician and couldn't get in that day so took her to urgent care.  Once there she was seen in minutes and her oxygen saturation was 82 (normal is 100).    The urgent care doctor did not want to go any further and sent us on to the ER.  We made it to the ER of the children's hospital in about 15 minutes and were again seen immediately.  Her O2 sats were a little higher by that point, around 87 but still not great.

They did breathing treatments, suctioning, and xrays to try to find the cause and came up stumped.  Three doctors thought it was pneumonia even though it didn't show up on her xray.  At this point I was praying for pneumonia so we could get antibiotics and go home.  They started antibiotics and did more breathing treatments and put her on oxygen but couldn't get her O2 sats above 90 so she was admitted about 9 pm Wednesday evening.

That evening was a complete blur as we got no sleep for all the doctors and respiratory techs in and out trying to get her oxygen levels up.  By Thursday she was still having much difficulty breathing and they swabbed her nose to run tests for many viruses.  

By Thursday afternoon she was on 100% oxygen and still unable to raise her O2 sats above 85.  This earned her a trip in the coolest ambulance ever to the main children's hospital, headed for the ICU.  Thankfully right before the transport team arrived the doctor had begun continuous nebulizer treatments on her for 2 hours and that brought her oxygen levels up high enough that we avoided the ICU but, we still were transferred to the main hospital as the feeder hospital doesn't have an ICU and they were concerned that she might still need it.

Once at the main hospital we were given the RSV diagnosis!  UGH!  She has had it twice before and was hospitalized for 3 days both times.  So we knew then what was before us.

She tried to sleep when she wasn't woken for treatments and testing.  

On Saturday she was off oxygen for 7 hours but, as soon as she fell asleep she started desatting again which earned us another day (or more)!

She enjoyed popcorn and movies in bed once she felt a little better.

Finally, Monday she was off oxygen at noon and remained off all night long.  When her doctor came in on Tuesday morning for rounds Alayna and I were both overjoyed with the news that we could leave our little home away from home.  I was a little concerned as she was loving all the attention, tv from bed watching, ice cream etc that the hospital had to offer.

Back to reality sister!

We are so grateful to Aunt Jane and Uncle Ed, Janette, Scott and Amy, and Tammy for keeping Aidan and/or Dariya for us so that Jason could come to the hospital.

We are thankful to Chris, Scott, Megan and Brett, Amy and the DSG, Sarah and Shan, Ed and Jane, Elise, Grace and Rayne, Kylie and family, Dick and Diane, Paul, and the whole transportation department from the school district for visiting and or spoiling our little princess upon her return home.

Praying we never see the RSV bug around these parts again!

Second verse same as the first: hearing loss

Last week I took Dariya back to the audiology clinic for further testing to see if they could pinpoint better her hearing loss on her left side.

Unfortunately, the results were the same as 6 weeks prior.

Right ear is in the normal range.

Left ear is profoundly deaf.

No aids would benefit her at this time.

Our main concern right now is educationally how this will effect her.  We know that her kindergarten class will be double the size of her PreK class.  With her type of unilateral loss it is hard for her to hear speech with background noise and to localize sounds.

It will be harder for her to hear and tune in to what the teacher is saying with a crowded classroom of kids.

The bonus is Dariya loves school and does compensate really well with her right ear.

We will just have to keep an eye on that right ear to make sure it is always hearing well so that she can continue doing so well.

Behavior and illness go hand and hand

Last Tuesday Alayna's independent therapists said she didn't have a very good day. In fact, the worst session they had seen from her since starting last June.  On Wednesday and Thursday she had negative behaviors with her school peers that couldn't be explained.

My mommy radar immediately knew she was getting sick.  Her sure tell sign of illness is bad behavior a few days prior.  Any of my ds friend's kids like this?

Sure enough she was ok on Friday as it was our first day of spring break, but she wasn't quite herself.  Then on Saturday the respiratory junk and fever kicked in.  By Sunday night she was up coughing ALL night long.

Thankfully she is starting to clear the junk out.

Hoping we can salvage at least the end of our spring break to get out and have some fun.  Poor Dariya is bored out of her mind but, she makes an awfully cute nursemaid.

Alayna only wanted her to hold her and Dariya quickly appeased her and sat on the couch like any good big sister would and patted Alayna until Alayna wanted to get up.

Oh, I am blessed.

5th grade musical

Last week Aidan performed in his last elementary musical (sniff,sniff).  The program was Sing me a swing song and featured Swing and Jazz songs from the 30's and 40's.

They performed numbers by Duke Ellington, Ella Fitzgerald, George and Ira Gershwin and Louis Armstrong just to name a few.

Aidan thoroughly enjoyed learning all these songs.  I guess he got his love for great jazz from his mom ;)!

Here he is on his saxophone  (lip syncing) to In the Mood by Glenn Miller!

Alayna loved the show and was super proud of her big brother.  When he came out on stage she said, "Hello Aidan!" loud enough for the whole gym to hear!

Dariya was too busy greeting the asst principal by climbing in his lap.  I guess they will be best buddies next year when she heads to kindergarten. ;)

Here is one of the nine songs they performed.

Super proud of you Aidan!

Weighted blanket DIY

Alayna has been waking up at night since around the time I started chemo.  It then becomes a domino effect as she wakes Dariya up and she has to bang her head to get back to sleep which is crazy loud.  Jason and I live in pretty much a zombie, sleep deprived state all the time.

Over the past few months I have been researching weighted blankets and thought this might help the sleep problems in our home.

However, after researching and talking to others I quickly realized they are very expensive to buy, running around $100 for the size blanket I was looking into buying.

So I set out to make them.

I searched the internet for a pattern and found one at Davidsblankets.com .  It sounded a bit daunting as I don't really sew.  Sure I had lessons when I was like ten but, truthfully I don't sew.
This pattern is only 8 steps.

Easy peasy!  Really go check it out.  If I can do it so can you!

I researched poly pellets and found out they are the extras from plastic companies.  Well, what do you know we have a company that makes plastic cups a few miles from home and Jason happens to deliver to them. He inquired about extras and if they would sell them to us.  The company gave us as many pellets as we need, for free! Yep, I will be making Dariya and Aidan each a blanket.  You can buy the pellets at W*lmart, online or any fabric store, be sure to check for coupons at the fabric stores as you can get 40% on an item many times making the pellets very inexpensive.  The good thing about pellets is you can wash and dry them.

Next, I hit W*lmart for their sale material and bought enough fabric to make both girls 40 x60 blankets for $13.50, fleece on one side, flannel on the other. Throw in a spool of thread for $2 and I was on my way home.

I followed the pattern completely besides the poly fil in step 7, I left it out as I find it to be too scratchy.  Here is an overview (check the link for complete details).

First, I washed and ironed the fabric. Then put them right sides facing each other.  I pinned around 3 sides and sewed a seam around the three sides.  Turned it right sides out and sewed another seam. Steps 1 and 2.

Next I measured my width and divided by 6 (to form 6 equal columns).  I marked the fabric with chalk and sewed along these lines.  I then measured the height and divided by 6 to make equal squares.  I marked the fabric so I had 36 equal squares..  Steps 3 &4

I wanted to make Alayna's blanket 6 pounds.  

Recommended weight is 10% of body weight plus a pound.  I did Alayna's a little heavier as I made the blanket much bigger than her so I knew all that weight wouldn't be on her.

I calculated the weight in ounces (6 *16 =96) then divided that by my 36 squares (96/36 = 2.66 oz per square)

I borrowed a digital kitchen scale from a sweet friend to do all the measuring accurately.   I then poured the pellets into each column and sewed across my marked line so that my first squares were completely encased. I then repeated this process with next 5 rows.  Steps 5-7

 Finally I was finished filling and had to seal up the remaining side.  I then made another seam all the way around the blanket (I don't really want 6 pounds of pellets falling out anytime soon ;)!

One word of caution:  I broke one needle when it hit one of the pellets.  Be very careful to get them out of the way of your machine.

After a few hours of work I had a finished product for only $8.75!

Now, I probably won't win any blue ribbons at the fair but, Alayna was thrilled with it.

Here's to hopefully more sleep coming our way.



Did you make a weighted blanket?  Tell me your success story!

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