Finding A New Normal (FANN) Fundraiser

Sarah is like any other almost 10 year old girl, extremely sweet, fun-loving, who enjoys aggravating her older siblings. However, Sara was born with a rare metabolic disorder called Glutaric Aciduria type1 and is now wheelchair bound with cerebral palsy. Sarah’s wheelchair does not fit through their home’s hallways or doorframes. As Sarah continues to grow, it is becoming nearly impossible for her mother, Dena, to carry her from room to room just to complete every day activities. Dena and her husband, who works two jobs, struggle to pay for the medical bills much less have the additional funds to renovate their home. All Dena wants is the chance to enhance Sarah’s independence and well being in order to provide her with the best life possible and a chance for her to develop to her full potential. Therefore, FANN is gathering the resources needed to renovate their home so she, her older siblings, and parents can adjust to their new normal. Join us in providing Sarah with a more accessible home!

Sarah Grace has a new neurologist

Hi All,

It has been a while since I have posted an entry. This is good! Sarah has been keeping healthy and has been hospital free for over a year now. During this year, she has grown in so many ways. The obvious is her size. She is no longer a little girl. She is a beautiful 7 year old with maturing looks and an amazing sense of humor. With the help of her therapist she has made some progress with motor skills and communication.

That being said, she still has many issues, especially with dystonia. The neurologist that was following her at Kennedy Krieger Institue left to work in another state. During our last clinic with him, he told us that he thought Sarah is a candidate for deep brain stimulation(DBS) sometime in the future.  Yesterday, we met Sarah’s new neurologist who also feels we should consider the procedure for Sarah.  DBS is not done here in Maryland, so we will have to research facilities out  of state and choose one that is best for our situation.  And of course, we will have to see what insurance will cover and where.  This new doctor would like us to think consider doing the DBS sooner rather that later because new research has shown that when it is done younger the positive effects are greater.

So now we begin the process of praying an researching.

20130808-112714.jpgSarah enjoying a walk –  August 2013

Updated Sarah’s Blog

Aunt Leann here!

I have updated Sarah’s Journal (Blog site).  There had been a lot of spam and I had to do a thorough clean out.  I am sure I m not getting everyone that was once a subscriber and for that I apologize.  You may have gotten a new email from the site giving you a password.  This will hopefully help reduce this craziness in the future.

Currently Sarah and the girls are in Ocean City enjoying this crazy hot weather.  I know how much Sarah enjoys the beach so I am sure she is having a great time with Aunt Theresa, Uncle Doug and mommy.

Sarah’s Summer at KKI

Sarah started back at the Specialized Transition Program at Kennedy Krieger 2 weeks ago.  She has been getting 3 hours of intensive therapy a day.  We are working on strengthening her core and getting her more consistent in her communication.  She works so hard and is tuckered out when she leaves.  She will miss her first week of school, but I am hoping her new aide will be able to come and get some training with the fabulous therapists at KKI.

She has been healthy this summer and we have enjoyed a lazy summer.  We have been counting down to our Florida vacation this fall.  Sarah was able to Make-A-Wish and was granted a week long Disney vacation.  Since Sarah can’t handle the heat, we chose to go in the fall when temps will be cooler.

I know I haven’t posted in a while.  I am currently writing up somethings for the website to bring it more up to date.  Thank you for your continued support and prayers.

Our Magical Make-A-Wish Adventure Begins

Nov. 27     It’s 2:30 am and somebody is in her room giggling!  Just as I predicted, a 4am pick up is not too early.  Sarah just can’t contain her excitement.  Today is the day she gets to ride in a limo to the airport to get on the airplane that will take her to Florida!  Patrick and I bring her into bed with us, hoping she will rest for a few minutes more, but it is not too long before we are joined by Kaitlyn and Hope.  Everyone is excited, all the bags are packed, our adventure begins.  Arrival at BWI  Waiting to check in bags.  Sarah voices her opinion  Sarah loves her view

After a 2 hour flight, we arrived in Orlando to be greeted by a volunteer from Give Kids the World Village(an absolutely amazing place and I encourage you to visit their website www.gktw.org).  He took us to get our baggage and to our transportation.  We were given a minivan with ramp and tie downs for Sarah’s wheelchair.  It also had an ezpass for tolls and a gps system.   Once all our stuff and we were packed into the van, we were off to the Village.  Sarah loves being in the middle of the van.  (In our big blue van she sits all the way in the back.)  And I could get used to driving something that doesn’t take wide right turns.  We arrived at the village to be greeted at the House of Hearts by another volunteer.  Ceiling of House of Hearts  We sit next to the Christmas tree and she gives each of the kids a welcome gift (stuffed Shamus for the big girls and a Mickey Mouse for Sarah) and we go through the welcome packet which includes our meal card and villa keys.  The girls and Patrick ride in a golf cart decorated for the season and Sarah and I follow in the van to our villa.  Decorated golf cart  It is so cute, it looks like a cottage right out of a fairytale.  Hope

Our Magical Adventure Begins!! Make-A-Wish trip Day 1

Nov. 27     It’s 2:30 am and somebody is in her room giggling!  Just as I predicted, a 4am pick up is not too early.  Sarah just can’t contain her excitement.  Today is the day she gets to ride in a limo to the airport to get on the airplane that will take her to Florida!  Patrick and I bring her into bed with us, hoping she will rest for a few minutes more, but it is not too long before we are joined by Kaitlyn and Hope.  Everyone is excited, all the bags are packed, our adventure begins.Arrival at BWI

Sarah is in the hospital

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.

Sarah has a bad cold :(

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!