We got it!

After a much anticipated 154 days, we have Harper's Tefra number. What a victory! So what exactly does that mean? Like many other things, we learned about Tefra, a medical based coverage for children with disabilities, shortly after Harper's birth. It allows states to extend Medicaid coverage to certain disabled children. It also provides care to disabled children in their home, rather than in institutions. This information, taken directly from the AR Medicaid website, strikes me as very interesting as within the very definition of Tefra, it is intended for children to remain in their homes. Let's go back to the unsettling conversation I had with our Tefra Coordinator, who very vividly explained the determination of eligibility was to be made based on whether it would be more cost effective, for the tax payers, to keep Harper in the home or placed in an institution. By the very nature of the formal definition, her statement was completely inaccurate and uncalled for, to say the least. I have been encouraged to file a formal complaint, which I am prayerfully considering. I began my many and varied calls (to Tefra Committee, AR Attorney General, County Supervisor, Governor's Office, etc) simply to gain resolution of her case in attempts to provide Harper with every opportunity entitled to her. Although that has been accomplished, I can not allow Ms. Tefra Coordinator the freedom to speak to another mother in the same disgruntled manner and giving the same mis-information. Part of my job of being a mother of a DS child is to lift up and support her in every way possible, the other, is to be a voice for all children with DS and support all other mothers as well. So, while I had not intended to ruffle any feathers, I very well may need to pursue this issue a bit further.

While we are privy to any underlying medical conditions Harper may or may not have now, we don't know what the future holds. Having Tefra is one more added layer of protection for her in the event we have the need. Tefra will also cover therapy, which Harper is currently covered under the Early Intervention Program, birth through age three in addition to durable medical equiptment, oral care, etc.

Harper has continued with her PT once a week and will be increased to twice a week by mid February. That is overseen through the Easter Seals in Little Rock. She is continuing to show improvement in many areas but is beginning to present a 'frog legged' situation with her hips/legs. This means her hips are rotating outward, followed by her legs/knees. We are focusing on bring her knees to face upward when lying on her back. The current method of retracting her legs back into proper form, is to use the 'figure 8' wrap twice a day for an hour each time. I am not sure the effectiveness this will have but believe it may be the least evasive method of which to begin. I have also, through my own research, learned carrying her on my hip along with using an infant carrier in the hip/side position, may actually be counter effect to the wrapping. I will be addressing this with her therapist on Tuesday. For as many questions I am able to answer for friends and family through this blog, I generate just as many for myself through research. It is a continual learning process for me as well.

Harper also began DT (developmental therapy)on Wednesday of this past week. DT focuses on developing the motor, cognitive, language, social and emotional skills of a child. It is a more of combination of all the other therapies and it more familiarly refered to as 'play time.' Her therapist is concentrating on strengthening Harper's trunk muscles and getting her to sit upright. We prop sit and encourage elongating the torso and encouraging further development of her arm muscles as well. Building muscle tone in Harper's legs is also a priority. It is a constant challenge of strengthening one area while developing another for that next milestone.

We visited Harper's pediatrician for her 6 month check up too. The pediatrician reviewed the notes made by the geneticist, we say on January 6th, which once again commented on how impressed he was with Harper's tone and expressiveness. Also, during our visit, they were able to draw her blood, on the first stick, for her thyroid testing, we discussed beginning solids and finished with a round of vaccines. Along with those, we were able to receive the Synagis for RSV. When Harper was a few months old, I questioned being able to receive the Synagis due to the fact that Hadley actually had RSV, our extensive family history of asthma and the possible bronchial issues children with DS may face from even common colds. The lady from the pediatrician's office who oversees the coverage from the insurance standpoint, was very thorough in establishing Harper's case, however our insurance denied coverage since she didn't meet specific criteria like prematurity and no significant health issues. We accepted that decision and knew praying Harper wouldn't get it was the best option since the vaccine would have cost, out of pocket, on upwards of $6000. That was made several months ago and just a week prior to the 6 month visit, the very same lady gave me a call. She said she had been thinking about Harper ever since and the office had several Synagis vaccines left over from clients who had not kept their appointments for their children and since they would eventually expire, meaning they would throw them out, she offered them all to Harper! I immediately responded with a resounding yes and thanked her profusely for remembering our precious Harper. So, Harper has received the first vaccine and will continue to go in to the office every 28 days for another through April. God certainly continues to work in some of the most amazing ways and through some of the most amazing people!

The day after Harper's check up, her nurse called and left a message on our home voice mail stating Harper's thyroid test results came back normal. Once again, we will have that rechecked at her 1 year visit and then annually after that. The following Monday, nurse Amy made it a priority to speak with me personally and took time out of her very busy day, it is cold and flu season after all, to attempt reaching me again. She successfully made contact with me just to make certain I had received her message from the previous Friday. Aren't there some of the most amazing people in health care today and what wonderful ways Harper is effecting people. She is such a special little girl!

Since receiving the green light to begin solids, we have started with brown rice cereal (Super Porridge) and then incorporated bananas. She is doing amazingly well and a brief visit by the speech therapist on Tuesday reinforced how well she is taking to being spoon fed. She isn't showing any aversions to textures in her mouth, which is wonderful. We do help train her with proper placement of her tongue, keeping it in her mouth, because her initial reaction is to thrust it out. Keeping it in allows her to properly move the food from the front of her mouth, to the back of her mouth and down her throat rather than giving me back everything I put in :) It is time to go out and dust off the ever faithful Super Baby Foods book by Ruth Yaron. I have used this through Hayden and Hadley, making and preparing my own baby food in the home. I am so excited as Farmer's Market season is just around the corner too!

In conclusion of this post and another chapter of my life, I must add how I have made a very difficult decision to leave my position as Children's Minister and come back home full time. Just as I felt God's calling me into the ministry at Bryant FUMC, I feel His calling me back home to this wonderful ministry He literally placed in my lap. In just one day's time, the amount of work I do with Harper, in addition to her more formal therapy is amazing yet very time consuming. I have been given only one chance at this and I must give it 100%. Not only do I need to be available to be an advocate for Harper, but for all children with DS as well. As I have said before, I do believe God gave me this wonderful gift because He knew I would do nothing less than everything in my power to ensure her success. With that being said, I have officially submitted my letter of resignation effective March 6, 2011. Such a scary move in a scary time but if I could not follow God's plan for my life, I would not be a faithful disciple and what an unsurpassed feeling of peacefulness comes with knowing your are following the will of God in your life.