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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Friday, January 28, 2011 by leannweaver.

Sarah Grace was taken to Johns Hopkins yesterday morning, Thursday, January 27th with a fever.  She didn’t have a great night but she is where she needs to be in order to get better.  We pray for the Doctor’s wisdom and for Sarah’s health today.

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Saturday, January 22, 2011 by admin.

When I was a child, I spoke like a child; I thought like a child, I reasoned like a child.1 Corinthians 13:4 

            Sarah Grace just turned 4 ½ this month.  In all her years, she has yet to speak a sentence.  She has learned to nod and shake her head for yes and no.  When she is interested in something she will stare at it until someone helps her to take a closer look.  She laughs (what a delight) when something tickles her funny bone and cries when she is sad or frustrated.  She vomits when she is overly anxious or excited.  And she will heartily smile in greeting to anyone that will give her attention.

            Two days before Christmas, Sarah Grace received her Tobii C12.  This is a special computer that will become her voice.  Through this device, Sarah will be able to utter her first sentence.  She has already begun communicating with this device, even without training.  Here is how it works.  Tobii has developed eye gaze technology which allows Sarah to simply look at the screen and make it speak for her by dwelling on an icon.

            Just two weeks after first seeing the device, Sarah navigated to a person page.  The page was a 4X3 grid of various people:  man, woman, mother, father, sister, brother….  As we were getting in our van, a man passed us and said, “Hello.”  As he was walking away, Sarah said, “man.”  I smiled and told her, “Yes, that was a man.  Who are they?” (I pointed to her sisters).  Without any prompting, she recognized the sister icon and said, “sister”.    Later that same day, she had navigated to a calculator.  I asked her how old she was and without hesitation, she replied, “4”. 

            Next week, we have an appointment at Kennedy Krieger Institute (KKI) in

            With this device, Sarah will one day be able to participate in a classroom spelling bee. She’ll be able to tell doctor’s where she is having pain or illness.  I’m sure she’ll tell one of her sisters off one day and give us sass.  But the most amazing thing will be the ways Sarah Grace will give glory to her Creator using her “special computer”.  I look forward to the day, when she will say a prayer or tell of how God has blessed her.  You, see, it would be so easy to sit and think about all the things she can’t do.  But it is much more rewarding to give God the glory for what she can do and praise Him for providing the technology so she can become a witness for Him.

            We are so very blessed to have this technology available for Sarah.  We are thankful that Tobii saw the need to use their eye tracking technology to aide those with special needs.  We are grateful for the therapists at KKI that saw the potential (that we had already seen) in Sarah Grace.  We are overwhelmed with thanks for all the prayers and generous support we have received from you for Sarah Grace and her needs.  May you also be richly blessed.

                                                            Blessings,

                                                            Patrick and Dena Handy

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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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Monday, July 26, 2010 by admin.

You can also see the coverage of Sarah’s benefit from FOX 45 by following the following link:

http://picasaweb.google.com/lh/sredir?uname=pgdento&target=ALBUM&id=5495302282680317905&authkey=Gv1sRgCPy15sGDu5HI6wE&feat=email

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Thursday, June 24, 2010 by admin.

There will be a benefit Pig Roast on July 17.  Click on the link below for details:

sarah-thrivent-flyer.doc

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Friday, June 11, 2010 by admin.

I am terribly sorry for not updating sooner.  It has been a bit crazy around here.  Sarah was discharged from the STP program at the beginning of May.  We are currently appealing with the insurance company to extend her therapy benefits. 

She did not take the transition back to preschool very well and ended the school year just like she started - vomiting at the sight of her school building.  At her yearly IEP meeting we discussed her anxiety about school and have decided that she needs to be with higher functioning children.  We are looking forward to a better school year next year, especially since the county will be ordering a VMax from Dynavox for her this summer.  Our goal is for her to be using the technology to communicate in the classroom well enough to attend kindergarten (in 2011) with typically developing children in our local school.

Sarah spent the last full week of school in the hopsital with a urinary tract infection and an upper respiratory infection.  (BTW, that makes 13 months between hospital stays - amazing!)  She came home last Friday night.  We kept her home from school on Monday and Tuesday, but sent her to school on Wednesday for the last day of school.  Although she did have a small vomit upon the initial arrival at school, she quickly go over her nerves and enjoyed the rest of the day.  She was able to get in the gait trainer (the one we hope to order and have for her at home) and play outside.  They also had music on in the classroom and she was able to dance with the other children.  Her OT took a video and it was amazing to watch her bop and spin to the music. 

We are currently doing some updating to Sarah’s website, so check back often for updates and photos.  My family is also planning a fundraiser dinner and silent auction on July 17.  We hope to be able to get the medical equipemnt she needs and get a start on our home renovations so that our home can be more accessible to Sarah.  The website has more info if you are interested.

 God Bless and thank you for your continued prayers for our little princess,

Dena

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Thursday, April 29, 2010 by admin.

So, we knew going into this program at KKI that we were going to exhaust Sarah’s therapy benefits for the year.  However, KKI has sent 35 pages worth of evidence to our insurance as to why they need to provide more therapies per year for Sarah Grace.  It came back today that they have denied our request.  Really no surprise there, it just means we have to take the next step.

We ask that you continue to pray for this situation.  Besides fighting to get the therapies she needs, we also have a long list of equipment we need to ask for and in my experience, insurance is going to try to get out of paying for it.  Sarah Grace has made such wonderful gains the past 6 weeks that it will be upsetting to see it be for nothing.

Just this week she walked in the gait trainer for quite a distance and made 7 consecutive steps (usually she only does 3).  Her head control has improved tremedously.  She is bringing her hand to midline and rolling onto her side.  Her communication has become more consistent. 

As Sarah finishes her last few days at KKI, I am so grateful for all they have done.  I pray that when she returns to Ruth Eason, they are able to continue the therapies started while Sarah has been in the STP.  We were happy to see Ms. Wendy, Sarah’s PT from Ruth Eason, on Monday.  She was able to observe and see just how far Sarah has come.  I just know I am going to be emotional on her last day.  She really enjoys going to STP and is working so hard there.  I have been taking picture the last few days and will post them soon.

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