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GOAL 1,500,000.00 (Funds Needed on or Before June 1, 2019)
CONCERT FOR A CAUSE July 27, 2019
CHARITY CONCERT FOR SUMMER
GOAL 1,500,000.00 (Funds Needed on or Before June 1, 2019)
Summer just had her PSARP (Posterior Sagittal Anorectoplasty) operation last wednesday. Her original schedule was supposedly last November 2018 after her distal colonosgram but she was diagnose with Bilateral Pneumonia so we had to take antibiotic and repeat her chest x-ray after a week but unfortunately her Pneumonia became progressive that we had to wait until December for another repeat chest x-ray. December came and her surgeon suggested to move it on January for us not to spend Christmas and New Year in the hospital. January came and Summer had cough, colds and ear infection and was again on medication so No Chest Xray for her until late February 28th she had her lab test and the result was Clear and no more Pneumonia. I knew then that I need to prepare myself for her operation and that I need to stay strong for her. March 18 I supposed to take Summer to her Surgeon just for a check up to her stoma but then the Surgeon surprised me a message that her operation is already scheduled on March 20, 2019. March 19 we had to be admitted and prep her for her operation. March 20 around 8:45am her operation started. It was the longest waiting period for me. I could not compose myself and every time they call us I could not help but run and then cry. 11:00am I was asked to meet her at the Post Anesthesia Room. I was so eager to see her, when they open the door my eyes was directly looking for her. I saw her carried by her Surgeon and then she was turn over to me. I held her carefully with the apparatus again attached to her and make sure her vitals signs are stable. 2 hrs after recovery, we were move back to our room. Summer was sleeping and resting for a longer period of time. If she cries, her eyes close and you can see her aching like in pain. She had a fever 38.8 that night and she was closely monitored. March 21 she started to open her eyes and started to be awake for a longer period of time. Her fever slightly washed off and her appetite is back again. March 22 her condition is getting better and she started to move around the bed. No more fever and no more tantrums. March 23 we were cleared from the doctor and advise to go home. We will be back 2 weeks after for her follow up check up. As a mother, it pains me to see her getting through all of these but I need to think what is best for her. I need to be strong for her and she motivates me to held tight to my Father in Heaven and pleading to give me all the strength and to protect my dear Summer from all the procedures that will be perform to her and also to bless especially the surgeon, anesthesiologist, nurses and everyone during the operation. It was one of the toughest time in our life that how we wish she could not experience it. To all who donated during the campaign gofundme and others who extend help monetary.....thank you so much! We were able to get through all our hospital bills and daily expenses. 2-3 months from now will be the closing of her stoma or colostomy closing. That would be the last step and procedure to correct her imperforate anus. I know that it would be another challenge and preparation as a family that we need to go through. I’m just so blessed to have a supported family...to my Ate Abby, Manay Armie, Manay Mishel, Manay BB and Manang Love especially for taking care Zandy and Daniel while we were in the hospital. And most of all to my partner Alvin, thank you for your patience and sacrifices for the family and for providing our needs. For giving her a priesthood blessing that is one best gift you can give to her/us your family. God is real, He listens and answer our prayers. We just have to do our part and reach out to him. I am forever grateful again for His tender mercy and love for my Summer and for my family. Summer is one brave little girl.....she knows her potential and she knows she can overcome her challenges. She is indeed special and our little angel. - By Temmie White (Mother)
What is Down Syndrome? Down syndrome is a genetic disorder within the 21st chromosome. When the cells divide abnormally, an extra genetic material is formed; instead of a pair, a third part is present. Also known as trisomy 21, the baby will have developmental delays as well as intellectual disabilities and distinctive facial features. Parents who have children with Down syndrome did nothing wrong to have the genetic makeup form in this manner. If your baby is diagnosed with Down syndrome, there are many early intervention programs available including special educators and therapists to help you and your child live with Down syndrome. There are several things to keep in mind if you are raising a child with Down syndrome. Check out these helpful tips for living with Down syndrome. 1. Your Baby Will Look and Act Like You It is a common misconception that all people with Down syndrome look exactly alike. Your baby will resemble you and your spouse as well as other relatives in your family. Although your baby may have key features of Down syndrome including a lazy eye, you will adore your child in every way from appearance to personality. Although it is important to help your child learn, remember he or she is still little. Finding a balance between play and school is essential. Not every single moment needs to be a teaching opportunity. You will enjoy time with your bundle of joy just being goofy. Don’t forget to let your son or daughter be a kid first and interact with others in the same manner. You did not have a baby with Down syndrome; you had a baby. 2. Your Child Will Achieve Regular Milestones – It Just Might Take a Little Longer You should never play the comparison game if you and your friend or sibling had babies around the same time. Although your little one might take a little longer to get there, your son or daughter can grow up to live a seemingly normal life walking and talking with the rest of your family. However, there are several things you can do as a new parent to help your child along the journey. You can show them how to play with toys to encourage movement, talk about interests to promote speech and praise them for being independent with things like eating, dressing, and so on. 3. You’ll Experience a Full Range of Emotions It is a misconception that people with Down syndrome are always smiling. Your child will not be happy all the time. In fact, living with Down syndrome means you will experience a range of moods including being angry, whiny, sorrowful, and silly, just to name a few. Just like any other person, people with Down syndrome could not be happy all of the time; that is inhuman and abnormal. Not only will your son or daughter have a range of emotions, but so will you. As a parent, it is okay to feel guilty or impatient at times. However, when you get frustrated, try to use that emotion as a teaching moment. If something is not working for you two, change it. For example, if you are struggling with speech, try to learn sign language or explore a completely different option that will still deem positive and practical results. 4. You’ll Visit the Doctor Regularly People with Down syndrome will need to get regular checkups. When your son or daughter is still little, you will visit a pediatrician or a children’s doctor. A general provider or family physician can continue care as they get older. Nevertheless, each checkup will monitor the health and well-being of your son or daughter with Down syndrome. During each appointment, the doctor will measure height and weight as well as test hearing and vision. Monitoring signs of heart problems is also important along with blood tests to monitor any thyroid issues. If somethiung of concern arises, you will be referred to a specialist. 5. Your Teen Can Graduate From High School Living with Down syndrome does not mean your child will be sheltered from regular schooling practices. Your child can attend a public school or mainstream institution like other children his or her age. Although your student may participate in some special education course, he or she can also participate in other activities throughout elementary, junior high, and high school. On the other hand, some parents feel as though specialized teaching and care is more appropriate for their child. It is important to talk to the staff and teachers about the expectations of education to give your son or daughter the best education possible.