Saturday, March 17, 2012 by admin.

Sarah Grace is home now… she got home about 700pm tonight… Thanks for all the prayers

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Wednesday, March 14, 2012 by admin.

Sarah developed a fever over night. Although she wasn’t thrilled about going into the hospital, we did get to play bingo this afternoon and she won a pillow pet and a princess doll. During bingo her fever spiked to just over 103. She was given motrin, but she vomited it back up, so she has been given iv tylenol and a med to help with nausea. A little while later she was given motrin again. Hopefully her fever will go down soon.

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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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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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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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Wednesday, April 6, 2011 by admin.

Hello Everyone!  So far 2011 has been quite eventful for Sarah Grace.  Toward the end of January, she was hospitalized with a viral upper respiratory infection and urinary tract infection.  After seven days of antibiotics and iv fluids she was home.   She was well for a while, then toward the end of March, she had some terrible congestion and vomiting, so back to Johns Hopkins we went for a 5 day stay.  She had the rhino virus (aka the common cold), but needed the extra iv fluids to keep her metabolism stable.  She is doing much better now and I thank you all for the prayers during those times.

Beginning March 8, Sarah returned to the Specialized Transition Program and Kennedy Krieger for intensive therapy to help with her transition to kindergarten next year.  We are concentrating on getting her better at using her communication device.  We are about 1/2 through her time there.  Unfortunatly she could use much more time in the program, but insurance will not allow it.  She will return to her normal public preschool classroom on April 27.  She will nots be happy about that, she LOVES STP.

We found out this week that insurance has approved a gait trainer for Sarah.  YEAH!    I just hope it is here before cheerleading season begins again.  Sarah Grace had a great time in cheerleading this year.  I will try to get some pictures posted soon.

God bless and take care,

Dena

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Thursday, September 2, 2010 by admin.

Sarah had a very busy summer.  In June she enjoyed the pool  and spending time with cousins during our weekly family meetings to prepare for my dad’s 70th birthday and the benefit dinner for Sarah.  July seemed to sneak up on us quickly. 

We spent a long 4th of July weekend at my parent’s house in WV.  Sarah Grace enjoyed spending time with all her cousins, aunts, uncles and grandparents.  We went to several outdoor concerts.  And if you know my family, where there is music, there is dancing.  Sarah just joined right in on the dance floor.  Once the lead singer came out and sang right to Sarah, she was beaming. (I need to get the pictures from my sister so I can post them).  We had many family fun events and although the weekend was busy, fun was had by all.  (And we saw the fireworks from a mountain, so the noise was muffled and didn’t bother Sarah).

The next weekend we had a family get together to celebrate Sarah’s 4th birthday and get final preparations ready for the benefit.  The following weekend we had a great time at Sarah’s Happy to Be… Benefit dinner.  We raised about $11,000 to go toward equipment and home renovations.   Special thanks to Thrivent Financial for sponsoring the event and matching funds up to $2000.  Sarah was the star of the event.  Her school let us borrow a gait trainer and she loved having the freedom on the dance floor.  If you didn’t see, be sure to see my previous post, you will see pics of her in the gait trainer (as well as a video of the coverage from Fox 45 news).

Sarah spent 2 weeks going to VBS, which she loved when it was not too hot.  We had about 2 weeks of rest before school started the end of August.

I know I keep saying it , but I do appreciate all that everyone has done for our precious Sarah Grace.  So many of you have generously given to her and there are no words to adequately tell you how thankful we are.  Her needs are so great that there is no way we could do it on our own.   

Your prayers are felt and without them I know I would lose my sanity some days.  Right now we are trying to get Sarah a communication device and the county is dragging their feet and giving us the run around.  We have a meeting set up for next Tuesday in the afternoon, please lift it up in prayer so that we can do what is right and beneficial for Sarah.

Warmly, Dena

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