Tuesday, September 9, 2014

Late Summer 2014

This post was written on August 23rd.  Much has happened since then with Naomi and I will try to update the blog with the latest news and going-on soon.  

We didn't have a lot of help this summer.  That was by choice.  I miss Naomi a lot during the school year and I wanted to have my afternoons while Lydia slept to spend time with Naomi.    Up until late July, the summer went beautifully and Naomi and I were enjoying lots of Mommy and Bear time, as we call it.     She is starting Kindergarten on Tuesday and she will eventually go full time.  I will miss her a lot, as difficult as she is.  The afternoons while Lydia napped worked out really well.  Naomi and I spent lots of time together and really enjoyed each other's company.  The rest of the summer did not work out so well.  On the days we did not have a nanny coming we were going to go over to my parents' house for a big chunk of the day.  The plan was to all swim (remember, Naomi LOVES swimming), then put Lydia down for her nap, and then Naomi and I were going to go out and about together.  Naomi is an on the go girl and we like our Mommy and Naomi outings.  Naomi prefers them without Lydia, and that's fine.  Unfortunately, the weather did not cooperate.  At all.  July and August, except for the past week, were endlessly cold and rainy.  Too cold and too rainy to swim most of the time.  So we were stuck in the house at lot, and stuck at home a lot.  We did torture Grandma and Poppa quite a few days, but without the pool to take up an hour to an hour and a half of the visit, it is a little tough.  Plus, Grandma and Poppa are pretty much homesteaders on their acre of ground in the city and they are busy, busy, busy all summer gardening, and now canning and preserving.  In all seriousness, I do think they like our visits, but I try to make sure they still have plenty of uninterrupted time to enjoy their summer too.   

We also had a new nanny this summer.  Naomi's long time nanny, Jenn, had family needs of her own to tend to and so did not have the time to help us.  We missed Jenn, but we've also learned to roll with the punches.  So we had two new helpers this summer.  First we had my cousin Hannah, who was home from her freshman year of college.  Hannah actually went to school with Naomi as her aide for quite a few days the last month of school.  We had horrific staffing issues all spring.  Hannah is great with Naomi and both she and Lydia really like her.  Then we also had Laura (not my sister), a high school ceramics teacher off on summer break.  She was also great with both girls.  Lydia really really really likes to watch people draw things and Laura's artwork is much more satisfying than mine.  She may never want to see another pack of crayola crayons again, though.  Lydia is kind of relentless.  So although change is always a little nerve wracking with Naomi, that part of the summer went really well.  

Then came the nose dive part part of the summer.  We were exposed to a horrific and virulent GI bug in late July.  Lydia was the first to get sick, on a lovely rainy, Monday morning.  We were snuggling on the recliner when all the sudden she start writhing and crying and then vomited her breakfast all over me.  The diarrhea started a few hours later.  The following Tuesday afternoon, after Naomi's best (as in least screaming) visit to the dentist yet, Naomi vomited all over me while I was getting her out of her wheelchair when we got home.  She was like a vomit volcano for the next week, in addition to a few days of diarrhea.  We knew Lydia was sick for a total of six days, but Naomi just was not getting better.  The diarrhea stopped, followed by terrible constipation.  And she couldn't keep anything down.  Everything we fed her she projectile vomited back up. Her little belly was enormously bloated and rock hard, filled with gas.  Because she has a feeding tube, we can open it to let excess gas out, which I did about every 20 minutes all day long, but nothing was giving her any relief.  And she screamed.  And screamed and screamed and screamed, in miserable pain for days on end.  It was terrible to watch, along with her getting thinner and thinner because she couldn't eat anything. .  She ended up losing at least 12% of her body weight.  Which is a lot, because Naomi is on the skinny side anyway, and lacks muscle because of her disabilities.  We took her to the doctor after she did not improve in the same time period that Lydia did. What happened was, the GI bug was so bad and Naomi's system is so sensitive, that it almost completely shut down her gastrointestinal system's ability to function, which made her unable to digest her food in any kind of timely fashion and unable to move her bowels, which is why she was vomiting all of her meals right back up.  We had to use an enema to clear her out from the bottom (she did not enjoy that.  Who would?) and then pump her full of laxatives to try to get things moving from the top.  It took 3 days.  I spent most of one whole day shifting Naomi from position to position to try to get her to pass the gas and move the stool through her system.  It was terrible.  She was in so much pain, and she hates to be manipulated like that anyway.  I did not think it was possible for on small 5 year old girl to have so much gas in her system.  No wonder she was screaming and crying non-stop.  We also had to take her off of her good, healthy, blended diet of real food and put her on a pre-digested formula only, and we had to run it through her feeding pump nearly round the clock because of the damage the virus did to her stomach's ability to process food.  She was on the formula and pump for about a week.  We have been slowly weening her back to real food.  In all, it's been about a month since she got sick.  We are really struggling to get the weight back on her.  She has gained back almost a pound of the over five pounds she lost.  It is very frustrating.  Naomi was very thin when we had her feeding tube placed because we were unable to get her to eat enough by mouth to maintain a healthy weight for her frame.  It took a year and a half of careful feeding and thoughtful food preparation to get her to a healthy weight and all that effort and progress was all wiped out in a week.  The other frustrating part is that, losing that much weight, Naomi lost a lot of her limited muscle mass.  That happens to all of us when we get really sick, but when we get back to our regular activities we put the muscle right back on.  It's not like that for Naomi. She has no independent ability to move and build muscle on her own.  All of the muscle she lost was built up over years of work between me, Naomi and her physical therapists.  Do you hate exercise and strength training?  Well, Naomi does to and so she screams through a lot of her physical therapy session and activities.  Her preschool physical therapist joked that Rob was going to have to give her free hearing aides because Naomi's screaming was going to cause her to lose her hearing.  So that will be painful for all of us, trying to rebuild that muscle mass.  

The good thing is the weather finally turned nice for the past week so we have been swimming nearly every day.  And last weekend Lydia and I went to watch  Naomi go horseback riding with Dakota the pony, which Naomi really loved.  

Naomi starts Kindergarten on Tuesday!  And she will be six on October.  It is hard to believe it has been six years.  Sometimes looking back, I wonder how we have survived it.  One day at a time, I guess. 

Here are some pictures from Naomi's summer.  

Silly, happy girl after a day at summer school.  Naomi had two weeks of summer school, 3 days in June and 4 days in July.  Starting next summer, she will go to school the whole month of July.  That probably sounds terrible for most children, but Naomi has always loved school and it helps with her boredom.  She struggles quite a bit with boredom because she can do so little, yet her mind is active and alert. There is a terrible mismatch between the abilities of her mind and the abilities of her body.  

Naomi is modeling a silly headband she got as a prize at preschool for being very good and doing all of her work.  She is very proud of it and smiles every time she wears it.


Naomi after a summer school session. She had her face painted.  She looks grouchy because she is engrossed in a show, but she had a great day and was very proud of her face paintings. 

Naomi and Lydia playing together on/in the jumper.  

This is a picture of Naomi while she was so sick.  She screamed and cried until she exhausted herself and fell asleep.  That happened pretty much every day for a week.  At least she was peaceful and at rest while she slept.  Poor sick sweetie.

Naomi in her stander with her doll Clementine.  You can see how thin her arms and shoulders got. 


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