For the past two days, I have been filtering through more paperwork and information to process. I met with our Easter Seals Family Resource Coordinator on Wednesday to review Harper's initial physical therapy, speech / language and occupational therapy evaluations. To recap, Harper was 12 days old when evaluated, but scored and performed as if she were a one month old. The team determined she was doing so well, there wasn't a need to return until November. The coordinator also presented us with some goals and child specific outcomes we can work on, with Harper, over the next year. Each therapist, OT, ST and PT gave two pages worth of action steps designed to promote her gross motor, fine motor and speech skills. These exercises include actions such as: Harper will maintain prone on forearms with head erect for ten seconds or Harper will engage in hand to hand exploration in supine for 15 seconds. After the end of the first quarter, December, we will be given the opportunity to evaluate Harper in each criteria based on a predetermined set of scores. I must say, while all of this appears overwhelming at first, they are simply the same milestones any baby would be accomplishing. Never having had to 'rate' my other two on their milestones, when put on paper, it tends to take on a more formal appearance. Harper has clearly already met and mastered many of these criteria and will only continue to grow and progress. If her first six weeks are any indication of what she can do and overcome, the sky is the limit for this child.
We also went over many of the services and organizations which provide needed help for children like Harper. One service recommended to us we may not need until she becomes a teen or even adult but with an application process taking anywhere from 3-5 years, we were strongly encouraged to complete as soon as possible. Apparently, this application can be very daunting as well and finds many parents giving up before completion. Knowing the process all to well, Robert and Michelle McClanahan decided to form a support system for parents like them, to help encourage and guide others through this process. Although they were surrounded by friends, family and their church, many of the aspects presented due to their son's condition, they faced alone. As parents who have literally been there, done that, they felt called to begin the organization named for their son, Riley, called Riley's Warriors. It was founded to provide support, love and acceptance so desperately needed during these special times of our lives. Robert and Michelle are committed to helping parents overcome that sense of aloness and equipt them with the knowledge necessary to provide the best care possible for their little blessings. Among other things, they provide each parent with a HOPE (Helping Organize and Prepare Effectively) notebook to help families consolodate all of the various medical and official paperwork related to each child. For myself, the organized nut I am, it was a welcommed gift. It is quite honestly a wonderful idea to keep for any child, special needs or not. Out of all of the information provided in the notebook, one simple sentence stood out more than any other. It said, "God transformed our perfect child into a child who brings out perfection in others." I belive that one sentence sums up my exact sentiment for Harper as well. She is a perfect creation by God and will bring out the absolute best in everyone she meets. Divine by design.
During the meeting, Harper took another bottle and it was noted how time consuming it was. What the coordinator soon learned, was that that particular feeding was almost record breaking time. I had mentioned this previously in our conversation as well and after witnessing it for herself, she too felt another visit from the speech therapist would be a great idea. The ST came out yesterday and witnessed Harper taking a bottle with and without help. She suggested a few more 'tricks of the trade' such as laying her on her side, to keep her from fighting gravity, to feed and supporting her tongue, instead of pulling on cheeks, while drinking. After trying these for the next few days, we will reassess and determine if the ST needs to come visit us again.
I must mention, the Easter Seals Team we have been working with is absolutely amazing. They continuously convey the goal of their job is to equipt us with the proper tools to ensure nothing but success in each specific area for Harper. Their willingness to provide top quality shows in not only their words, but in actions as well. It is refreshing to know these women are on 'Team Harper' as well.
I have also been working with an Outpatient Financial Counselor, at ACH, to fill out and submit our Tefra application. This, of which, is a 3 - 5 month application process but fortunately will retro pay back to Harper's birth and will carry through the rest of her life. In these tough economic times, it provides piece of mind that Harper will have on going medical coverage in any event.
My head has truly ached for the past two days from information overload. I will continue to do whatever necessary for Miss Harper Faye and am so grateful she sleeps through the night so I can at least regroup overnight to be able to think and process all of this information a bit better the next day :)
We also went over many of the services and organizations which provide needed help for children like Harper. One service recommended to us we may not need until she becomes a teen or even adult but with an application process taking anywhere from 3-5 years, we were strongly encouraged to complete as soon as possible. Apparently, this application can be very daunting as well and finds many parents giving up before completion. Knowing the process all to well, Robert and Michelle McClanahan decided to form a support system for parents like them, to help encourage and guide others through this process. Although they were surrounded by friends, family and their church, many of the aspects presented due to their son's condition, they faced alone. As parents who have literally been there, done that, they felt called to begin the organization named for their son, Riley, called Riley's Warriors. It was founded to provide support, love and acceptance so desperately needed during these special times of our lives. Robert and Michelle are committed to helping parents overcome that sense of aloness and equipt them with the knowledge necessary to provide the best care possible for their little blessings. Among other things, they provide each parent with a HOPE (Helping Organize and Prepare Effectively) notebook to help families consolodate all of the various medical and official paperwork related to each child. For myself, the organized nut I am, it was a welcommed gift. It is quite honestly a wonderful idea to keep for any child, special needs or not. Out of all of the information provided in the notebook, one simple sentence stood out more than any other. It said, "God transformed our perfect child into a child who brings out perfection in others." I belive that one sentence sums up my exact sentiment for Harper as well. She is a perfect creation by God and will bring out the absolute best in everyone she meets. Divine by design.
During the meeting, Harper took another bottle and it was noted how time consuming it was. What the coordinator soon learned, was that that particular feeding was almost record breaking time. I had mentioned this previously in our conversation as well and after witnessing it for herself, she too felt another visit from the speech therapist would be a great idea. The ST came out yesterday and witnessed Harper taking a bottle with and without help. She suggested a few more 'tricks of the trade' such as laying her on her side, to keep her from fighting gravity, to feed and supporting her tongue, instead of pulling on cheeks, while drinking. After trying these for the next few days, we will reassess and determine if the ST needs to come visit us again.
I must mention, the Easter Seals Team we have been working with is absolutely amazing. They continuously convey the goal of their job is to equipt us with the proper tools to ensure nothing but success in each specific area for Harper. Their willingness to provide top quality shows in not only their words, but in actions as well. It is refreshing to know these women are on 'Team Harper' as well.
I have also been working with an Outpatient Financial Counselor, at ACH, to fill out and submit our Tefra application. This, of which, is a 3 - 5 month application process but fortunately will retro pay back to Harper's birth and will carry through the rest of her life. In these tough economic times, it provides piece of mind that Harper will have on going medical coverage in any event.
My head has truly ached for the past two days from information overload. I will continue to do whatever necessary for Miss Harper Faye and am so grateful she sleeps through the night so I can at least regroup overnight to be able to think and process all of this information a bit better the next day :)
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