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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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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Wednesday, March 24, 2010 by admin.

Sarah attended her first day in the Specialized Transition Program at KKI today.  She was amazing!!!  While I sat in a little room meeting  all the specialists that are going to work with her and filling out paperwork, she willingly (for the most part) went with several of the specialists to work with them.  She even got upset when the OT had to bring her to me to be placed on her feeding tube.  She wanted to continue playing at the sand table.

They have shortened the day for her (9am to 12pm instead of 8:30 am to 3pm).   She is going to get a lot of one on one attention - and we thought she was spoiled now!  They have plans to have her assessed for augmentative communication and a gait trainer (the Kid Walk).  They may also come out to our house to make recommendations on how to make our bathroom accessible :)  They are going to work on potty training with her, too.  They sure have a lot to do in only six weeks!

KKI is also talking to our insurance and are going to do all they can to help us get more coverage for Sarah.  That way, if they believe she needs futher therapy sessions beyond the program, she will be able to get it.  We can only pray that the insurance company listens to the drs and therapists.  I may have to ask them to also send letters to the HR of Patrick’s company. 

We are looking forward to another good day tomorrow!

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Thursday, March 11, 2010 by admin.

Sarah and I just got back from the Rehab Clinic at Kennedy Krieger.  It was a nice experience and we got to see a handful of specialists.  They recommended a Specialized Transition Program for Sarah Grace.  It is an intensive therapy program that will require her to attend the school at KKI for several weeks were she will be evaluated and recieve training on assistive technology, gait training, oral motor therapy for feeding and speech/communication, and get help for optimization of function in the educational environment.  The program will include long days for Sarah, but will ultimately help her current school know better how to work with her.

Our Sarah Grace is so ready to express herself and this program fills us with hope.  We look forward to working with KKI to help our little lady reach her potential.

 I’ll keep you posted!!  God Bless!

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Monday, March 8, 2010 by admin.

I’m so sorry for not updating the blog the last few months.  I guess no news is good news when it comes to Sarah Grace and her health.  She continues to stay healthy except for the sniffles here and there.  It has been almost a year since her last hospital stay - Praise the Lord! 

With the new year came another change of insurance for us, but this was a choice on our part and not the ordeal we went through a year ago.  Patrick totalled his car (only the car was hurt thankfully) at the end of January.  We endured 2 blizzards in less than a week in February and the collapse of our sewage drain.  Needless to say we are in the middle of remodeling our basement - a project we were planning on doing, but got an earlier start on it because of sewage water damage in our basement.  Once the basement is finished, we’ll be able to move Kaitlyn and Hope to their own bedrooms downstairs and use the space in their current room to remodel the bathroom for wheelchair accessibility (and add some space to our bedroom).   We are excited about the changes to our home and are gearing up for the challenges of remodeling.

Just this week, Sarah Grace has 2 appointments in Baltimore.  The first is a metabolic check-up at Johns Hopkins.  The second is a rehab clinic (finally) at Kennedy Kreiger.  Please join us in praying for this appointment.  We are really hoping to tackle Sarah’s communication issues and help her to be more than a passive learner in school.  In April, Sarah’s school has made arrangements for her to try the EyeMax by Dynvox.  We are so excited about this.  If she is able to use this eye gaze technology, it could really open up her world. 

 Once again, I’m sorry for not updating you sooner.  I will (I promise) let you know how her rehab clinic and EyeMax assessment goes.  Here is a recent picture of Sarah with her uncle and sisters:Father-Daughter Dance 2010

Thank you for your continued prayers for our little princess,

Dena

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Wednesday, November 4, 2009 by admin.

As some of you may remember, we went through quite an ordeal with health insurance earlier this year (check me out on cspan.org giving my speech during Senator Cardin Towson Town Meeting).  As you can imagine, the added cost of health care for our family has pushed our budget to it’s limits.  We have unpaid medical bills and just got notice that our health insurance premiums will be going up $200 next month.  So anyway, through all this I have made a conscience decision to trust God.  I know He will provide.  Last week as I was taking Sarah Grace into school, the principal asked me if I would be interested in being a substitute teacher’s assistant.  I said right away that I would.  I can think of no other job that would have me work only when Sarah Grace is in school.  So I went home and filled out the online application.  In my prayer group yesterday,  I shared my prayer that the job would open up to me, if it was God will.  Well, the prayer leader had not even finished praying when my cell phone rang.  I don’t normally take calls during prayer, but I thought it was Sarah’s school calling me, so I answered.  It was not the school, but a man from the board of ed calling to give me the details about the position at Sarah’s school.  So needless to say, I go tomorrow to fill out payroll paperwork and I need to get my fingerprints done, and then I will be able to work part time, temporary jobs at Sarah’s school.  I am truly grateful to God for opening this door for us.

 On another note, Sarah Grace continues to have good health despite all the illness going around.  We are pretty sure, Hope, had a mild case of the H1N1 flu a few weeks ago.  Sarah Grace has had barely a sniffle since school started.  Thank you to all of you who continue to pray for her health.  In 2009, she has had only one hospitalization and it was just overnight for fluids.  What a blessing!!

The organization that is manufactoring the Eagle Eyes system has asked us to try using software called camera mouse.  It is free!  If Sarah is not successful with this technology, then they would want us to come out to Utah to explore the Eagle Eyes system further.   Our prayer is that God will provide a way for Sarah Grace to express herself.  The camera mouse technology is probably not going to be right for Sarah, but we are giving it a try.  It relies too much on her facial movements, though.  She needs something that can use her eyes.  So, I am guessing that we will need to make a trip to Utah if we are going to persue the Eagle Eyes, or we will need to explore other eye gaze options.  Unfortunately, the county augmentative communications people are doing little to help Sarah Grace.  They have really dropped the ball with her.  I have to wonder how much it has to do with $$.  But again, I know God has a plan, and my job is to be the best advocate for her and continue to give her the tools she needs to the best of my ability.

 I pray each of you has a blessed Thanksgiving and ,God willing, my next entry will be a December update.  God Bless!

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Tuesday, October 13, 2009 by admin.

Happy Autumn Everyone!  It has been a while since I have updated you, for that I apologize.  Sarah Grace is doing very well.  She has made the adjustment to school and enjoys the time she spends there.  The first month was difficult, but she seems to be over her anxiety now.  She is not riding the bus, though.  The bus ride made her morning too long and was a major source of her anxiety.

 Two weeks ago we had an appointment to have her hearing checked and see an ENT to be sure she did not need tubes placed in her ears.  They found her hearing to be normal and no reason to have tubes except that she had a series of ear infections this past spring.  Last week we saw her neurologist and have discussed trying some medication to help with her tone during the school day.  When she is excited or working on something, Sarah Grace has to fight her tone and it can be very tiring because it works against her.  We need prayers for us to find the right med for Sarah Grace.

I was very encouraged to hear about Eagle Eyes.  Please read the attached article and watch the video.  We are actively looking into this for Sarah Grace.  It could really open the world to her and allow her to express herself.   Please pray that doors will be open to us to be able to try this technology and get it for Sarah if it works for her.

http://www.standard.net/topics/news/2009/10/10/first-time-hooper-family-sees-bright-mind-inside-child-silenced-rare-disease

 I’d like to share a funny story about Sarah Grace.  I think it will show what a wonderful sense of 3 year old humor she has.  One morning last week Sarah was using the toilet.  Well, the phone was ringing and it was from Chesapeake Rehab who we had an appointment with later that day, so I felt that I needed to answer the phone.  So I quickly grabbed Sarah Grace and put her over my shoulder.  As I stood up and began to walk away, she began to laugh like crazy.  She continued to laugh as I walked out of the bathroom, across the hall and into my bedroom to answer the phone.  She laughed throughout my whole phone conversation.  When I hung up the phone, I took her off my shoulder to ask her what was so funny.  Well, I realized as soon as I saw the toilet paper in her hand.  She had grabbed the TP as I had flung her onto my shoulder and pulled it all the way from the bathroom, across the hall and into my bedroom.  And she thought that was hysterical.  She went to school that day still holding onto the end piece of TP.  By the way, Chesapeake Rehab was calling to cancel the appointment, I guess God knew I would need some comic relief.

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Wednesday, June 17, 2009 by admin.

Next fall, Sarah Grace, will be attending Ruth Parker Eason School.  It is a public school comprised of children who have IEPs.  The biggest focus for this coming school year is to get her more independent in her mobility and communication.  She will go to school 5 mornings a week.  Durning this time, along with general instruction, she will get 30 minutes of PT, 30 minutes of OT and 90 minutes of Speech a week.  She will also get aqua therapy as part of the PE program. 

Our ultimate goal is to have her ready to be in a typical Kindergarten in our local public school when she turns 5.  My prayer is that by the time she is 4 that she will be spending at least part of her time with typically developing children.  The fact of the matter is, no matter where we place her for school, nothing will be ideal.  She is a typical 3 year old cognitivly, but not typical physically.  So we feel that the next couple of years should be devoted to giving her all the skills she will need to succeed in the classroom that will challenge her intellectually.  So we are focusing alot on communication and mobility, as well as nurturing her desire to learn about the world around her.  I will be in prayer this summer for all of Sarah’s preschool teachers and therapists.  We are looking forward to a great school year and the growth that Sarah will have.

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Wednesday, June 10, 2009 by admin.

Sarah Grace had her first dentist appointment today.  She got a little nervous when we went to the exam room, but Kaitlyn and Hope were there to distract her, so she was fine until the dentist put on his gloves.  Through the fussing he managed to get a look at her teeth, brush and clean a little and give her some flouride.  The dentist was great, when he saw she was getting upset, he paused and played with her by making a glove balloon (he even drew a face on it) and letting her hold a large dentist’s mirror.  He even managed to make her laugh a few times.    Overall it was a good visit and she does not need to see him again until December.

I did talk to him about our concerns with her popping her jaw.  He said he is not worried about it right now, but when she gets older, if she does not stop, her muscles might get strong enough to cause some problems.  So it is something for us to work on so.  Her OT just made her a hat with an elastic chin strap to help her keep her jaw more stable (and remind her not to pop, but I’m not convinced it is doing anything but keeping her hat on her head.)

As far as insurance goes, once MHIP recieves our payment for May and June, the will activate her insurance and send her a card.  Very good news!  This means she will not have a gap in coverage.

I hope everyone is enjoying the beginning of summer!

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Sunday, October 5, 2008 by admin.

And quite happy about that.  It turns out she had a virus that caused the vomiting and fever.  They first suspected a uti because her urine was cloudy, but the urine test came back negative.  So did the rsv test. 

The first night we were in the hospital, they gave her vamcomycin.  It is an antibiotic that can have a side effect called “red man” which causes your face to turn really read.  Well it turns out Sarah is allergic and also had severe swelling and a fever.  She was so miserable.  The swelling was so bad around her eyes that you could only see the tips of her eyelashes.  She just kept crying and saying “momma” (which is the only real word she says).  It took 2 days for the swelling to go down all the way. 

After 24 hours of no fever and no vomiting, she is home today.  She and I are both looking forward to an uninterrupted night of sleep (no more 3am blood tests and vitals being taken every 3-4 hours). 

Thanks to all of you who have kept Sarah in your prayers.  God bless you all,

Dena

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