Riley and Rachel

Riley

Riley's third year in our home has been spent proving to us that she is, indeed, a preschooler. She has developed quite a little personality and is very independent. She is able to move from room to room with ease and speed and likes to play in the different rooms of the house either with Garrett, mom and dad, or by herself.

Medically, Riley has only had a brief incident of Croup over the holidays in 2005 and occassional ear infections. She had her ear tubes replaced this spring and has been wearing her hearing aids frequently. We are still performing tests with the hearing aids to make sure that they are functional and of use to her.

Riley ended her last term at her old school this summer and we were very sad to leave, but have started her in a new program along with her sister at a local elementary school that she attends 5 days a week. It has the same structure and curriculum as other preschool classes but is adapted to those in her class with the most severe impairments. When we were selecting the class, there was concern that Riley was too "bright" for the class and may get bored, but they are addressing many of the communication issues that we feel are vital to enable her to express her needs and wants.

She no longer receives therapies in our home but receives them, rather, at the on-campus therapy unit at her school. She is progressing and is becoming more cooperative with the various therapists and is showing a great desire to be independent. We still use her standing frame and are in the process of getting a walking frame for her to practice with in our home. She still uses her modified toilet and is becoming more tolerant of soft table foods--she seems to like highly flavored and spicy things.

Our goals this next year with Riley are to continue her work in her preschool class, learning communication techniques that we are working to implement as well here in our home. We hope that Riley is able to transfer this year from a bottle to a sippy cup and continues to tolerate a wider variety of foods.

Rachel

2005 was a very turbulent year for Rachel in our home. She spent most of the year very ill and uncomfortable and prior to her 2nd birthday, we had begun making arrangements to have her placed in a nursing facility. It became next to impossible to get our physicians to cooperate with us and coordinate with each other, her pediatrician even chosing to longer care for her because she was too difficult to diagnose. We were unable to get the appropriate nursing care authorized by the state into our home and the medical supplies needed to care for her.

After spending many months on a waiting list for a specific home we liked, we decided to tour a second home and immediately hit it off with the owner. We made arrangements for Rachel to take residence in the home here in our town, owned by a husband and wife, and also occupied by their 3 teenage children and 5 other medically fragile children. We were upset and disappointed that we had gotten to this point in Rachel's care, but felt an immediate connection with the family and had to take this next step.

With a little adjustment and time, Rachel has adapted very well living in the home and receives an overabundance of attention and love. The children are treated as their own and the nursing staff seems to fight over who get to take care of Rachel. Her vomitting improved and subsided over the course of a few months and we've finally been able to get Rachel the appropriate nursing care and supplies that she has needed so that we can address her other medical issues.

We decided to revisit the hip surgery and started Rachel on a muscle relaxer which had an overwhelmingly sedating effect on her. She was in a comatose state for weeks until we decided to discontinue the medication and call off the surgery for the time being. We are also in the process of ordering Rachel's hearing aids and reevaluating her equipment needs so that we can continue her therapies, notwithstanding the dislocated hip.

In addition to her sister, Rachel has been attending the special needs preschool program at a local elementary school where she has been exposed not only to her peers, but to a variety of sensory activities and basic preschool curriculum. She enjoys the attention she receives from the staff and, like always, loves being around other people in a stimulating environment. We are so happy that we have been able to normalize Rachel's life and medical situation over the past year, however difficult it has been for our family.