Sarah Grace Turns Two!!
Grace to you and peace from God our Father and the Lord Jesus Christ. I always thank my God as I remember you in my prayers, because I hear about your faith in the Lord Jesus and your love for all the saints… Your love has given me great joy and encouragement, because you, brother, have refreshed the hearts of the saints. Philemon 3-7
Words cannot describe the love, joy and encouragement we have received this year. This time last year we were just realizing Sarah’s needs. It took us the first year of her life to grasp the enormity of her diagnosis of GA1. We have spent her second year coming to terms with her cerebral palsy.
Last August, my sister, Leann, organized a benefit dinner for Sarah Grace. Many of you may have been there or supported Sarah in other ways. I can’t tell you how overwhelming it was to walk into the room and see the place so crowded. I had planned to say something at the dinner, but was too overcome to do so. The generosity of everyone was and has been so overwhelming that there is no adequate way to say thank you. For the willingness of family, friends, and strangers to help meet Sarah’s needs financially and through prayer we are truly grateful.
With the money raised, we were able to pay off the hospital bills from her 13 hospitalizations. By the grace of God, she has not been in the hospital since March. Her wheelchair, the Zippie Iris by Quickie, in blue opal, has been ordered and we anxiously await its delivery. We are also getting a prone stander for her. She receives physical and occupational therapy and sees a developmental specialist weekly. She will soon have a speech pathologist as well.
We still visit Johns Hopkins once a month. During these visits we meet with her genetic specialist and dietician. Blood and urine samples are taken and she is weighed and measured. The last year has seen many changes in Sarah’s diet. She has gone from continuous tube feedings at night to 5 feedings during the day. Currently she is on a mixture of 2 formulas, Nestle Good Start and XLys, XTrp Analog which increases her protein intake, but reduces the amino acids she should not have. She also eats a small amount of baby food (fruits and veggies only) by mouth. Her medications include L-carnitine, bicitra, riboflavin and singulair. She sees a neurologist at Kennedy Krieger every 6 months. He has prescribed diazepam at bedtime to help with her extra movements that can plague her as she tries to sleep at night. We will be going to a rehab clinic at Kennedy Krieger at some point where they will be able to evaluate her needs further.
We still don’t know if Sarah Grace will walk or talk. It is very apparent to everyone around her that she is a very bright little girl. She is sorting and making choices. She is beginning to show interest in using the bathroom. She has indicated to us that she wants to be called a big girl and not a baby. Mostly Sarah is a blessing to all those around her. She is a happy girl who loves to be outside, to dance to music, to splash in the pool, to laugh at her sisters, to cuddle with mommy and daddy…all the things a two year old should love to do(including throwing temper tantrums).
What we do know is to fully rely on God. He will provide a way for Sarah to get around and communicate. I have no crystal ball or magic antidote. I do have a Father God, who created a magnificent little person and chose to place her in our family. He will provide for all our tangible and intangible needs. We take it one day at a time and do everything we can to help Sarah Grace reach her greatest potential and pray that all she does gives glory to her Father in heaven.