Tuesday, February 21, 2012 by admin.

Sarah missed 4 days of school last week and will be missing at least one this.  She has a bit of congestion that was making her vomit.  Thankfully there has been no fever, so the docs are letting her stay home on a sick day formula, but do not want her in school while her immune system is down.  Although I am grateful we have avoided the hospital, it is tiring having to feed her every 4 hours around the clock.

On a different note, we have seen some wonderful progress in school this year.  Thankfully, she has gotten into a school that is willing to learn her communicator and work with her on it.  She is using it more consistently and appropriately.  Also, she has really gotten good in her gait trainer (walker).  I think she runs more than she walks.   She is doing well academically and showing progress on typical kindergarten curriculum.

I’ll be writing again soon about a blessing that has happened to allow Sarah to get some needed therapies at Kennedy Krieger.

Have a blessed day!

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Friday, October 21, 2011 by admin.

Sarah lost her first tooth while she slept last night.  Just before 5 am this morning we heard her giggling in her bedroom.  When I went in to see her, I noticed a gap in her smile.  Needless to say she is thrilled about the tooth fairy coming tonight, though we will have to just leave a note since we are pretty sure she swallowed her tooth. 

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Wednesday, September 28, 2011 by admin.

We have been able to avoid the hospital this time around.  Of course I think it was more stressful to have her home in some ways.  Meds every 3 hours around the clock and extra fluids didn’t allow for much rest on my part.  We did take her to the pediatrician with her sister yesterday.  Kaitlyn tested positive for strep, so she and Sarah were both put on antibiotics.  They seem to be much better today, though Sarah has a bit of congestion still.  The two of them should be back in school by the end of the week.

 Thanks again for all the thoughts and prayers.  It has been a crazy September here in the Handy house.  Each girl took turns taking a week to be sick, then Sarah and Kaitlyn get sick together this week.  Sarah has missed so much school that they are getting a tutor for her.

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Sunday, September 25, 2011 by admin.

Sarah has developed a fever today.  The docs are letting us keep her at home on fever meds and extra fluids for now.  We have never followed a sick day regimin at home, so we are treading on new ground.  I am happy to keep her home and away from the germy hospital, but I am nervous because I know how important it is for her to get those extra fluids when she is not sick.  I am praying she will continue to tolerated feeds.

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Tuesday, September 20, 2011 by admin.

Sarah came home from the hospital on Saturday.  It seems she and her sisters have all gotten this parainfluenza virus in turn.  Two weeks ago, Kaitlyn missed a whole week of school because of it.  Last week, it sent Sarah to the hospital.  And today, Hope started with fever and a sore throat.  I guess I can be thankful they didn’t all get it at the same time. 

A great big thank you to all of you who have prayed for Sarah Grace through this illness.  She still has a cough and congestion that we are watching to make sure it stays lose and in her upper airway.

On a good note, she was found to have grown a bit since her last visit to Johns Hopkins and we left the hospital with a tweeked formula recipe to reflect her growth.  She is in the 50%ile in height and weight.  For those of you who are interested, I have attached Sarah’s formula and meds sheet.

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Friday, September 16, 2011 by leannweaver.

From Dena’s Text this morning:

I haven’t heard officiall yet, but I think we will be here another day.  Sarah had some vomit last night because of coughing and they are being cautious of aspiration and pnuemonia.  All her cultures (Bacterial and viral) have come back negative for the things they tested for.  I’ll keep you posted.

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Wednesday, September 14, 2011 by leannweaver.

Dena and Sarah are at Johns Hopkins this morning.  Sarah is running a 102 degree fever and did not keep down her am feeding.  Please put Sarah and Dena in your prayers for a quick turn around and recovery.  I will try to keep everyone updated on Sarah’s progress.  God’s Grace and Peace to all!

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Tuesday, September 13, 2011 by admin.

Well, I kept Sarah Grace home from school today.  She complained of a sore throat yesterday, so I took her to the pediatrician.  Her sister missed a whole week of school last week due to tonsilitis.  The doctor did not see anything in Sarah’s throat or ears, but did hear some crackle in her chest, so she gave us a perscription for antibiotics.  Today, she ran a low grade fever, 99.4. 

So we are watching her and praying her fever does not go above 100 and she continues to tolerate her gtube feedings because that will send her to the hospital.

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Wednesday, September 7, 2011 by admin.

So the 2011-2012 school year has begun and Sarah Grace and her sister, Hope, have started at a new school.  For Kindergarten, Sarah has been placed in a Multiple Intensive Needs Classroom at Woodside Elementary School.  She stays in the MINC for core subjects, but is able to attend lunch, recess, art, music, and PE with typically developing children (along with her aide).  She gets to see Hope during lunch and recess.  (We moved Hope to Woodside for 2nd grade because she is having some difficulties her former school did not have the resources to accomodate.)  Sarah Grace is transitioning well to her new surroundings, but the longer day is hard for her.  Because of the longer day, she now gets a g-tube feeding while at school.  This seems to be going well, thoug. 

We have been blessed to have Sarah’s PT from last year has follow her to her new school.  She has been a great help in Sarah’s transition.  The new school year has also given us a new group of Assistive Technology  people.  So far this has been a much better experience then the last 3 years.  I pray this is a growing year for Sarah and her use of her communication device. 

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Wednesday, April 27, 2011 by admin.

Sarah Grace finished her time at STP (well, insurance ran out) on Monday.  During her discharge, I was told that Sarah is the most challenging person they have ever worked with.  The challenge is that her motor ability and her cognitive ability are so far apart.

 So now we are challenged to find a placement for school next year that can meet both her her physical needs and her academic needs while keeping in mind her social and emotional needs. 

I am praying that we make a good and wise decision for next year and that God will place a team of people that will help Sarah grow and learn.  I don’t need people who will scratch their heads and give up.  We know Sarah is a huge challenge, so give her the best you’ve got to offer! 

The next few weeks will be a challenge.  Integrating Sarah back into her classroom.  Having meetings about placement and making decisions.

Also, pray for me this summer,as I will be Sarah’s main source of therapy.  I pray that I will be able to integrate things into our daily lives.  I also need to spend some quality time with my other two girls.  I am looking for volunteers who would be willing to come and sit with Sarah (not care for her, I will be there to do that) while I get some things done around the house.  If you are willing, please email me mygirlskhs@yahoo.com.

Thanks and God bless,

Dena

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