So, the last time I've updated this blog was June 2. I have very good reasons for that... We have been so busy. To keep you up to speed:
- May 28- Private Duty Nursing ended and we were pending Medicaid application
- June 2- Caleb, Mom, and Dad checked in at a nursing home in Copperas Cove (2 hours away from home) to fulfill the waiver requirement to get Medicaid. This was really difficult, as this was the first time we travelled with Caleb.
- June 4- Doctor's appointments in Austin. They told us he was in the 97th percentile on weight.
- June 8- I went back to work Full-Time. That was a very emotional day. Since his birth, I have never parted from him. I recall crying the night before. Since returning to work, I always come home from 12pm-1pm to see him and do his trach care.
- June 24- Physical Therapists start their visits. Caleb begins his daily exercises to help him reach his developmental milestones.
- July 2- First Trach Clinic Appointment- Caleb was seen by many experts to determine his progress. Paul found out that day that if Caleb is transported by less than 1 person, CPS will be contacted. (SCARY... we will always be in compliance)
- June 6- Medicaid approved and we begin the process of finding a Home Nurse Agency
- July 14- FINALLY get nurses. Allison and Sandy begin their Monday through Friday 7am-7pm shifts. (It was my personal request not to have nurses on weekends, so we can be a family)
He is six months now at a whopping 22 lbs. He demonstrates excellent head control but needs to work on trunk control, belly time, rolling, and other developmental milestones. We try not to compare him with other babies because we don't want to be disappointed. We are very excited every time he does something for the first time. He laughs, he giggles, he wiggles, but without sounds.
During the time we were without nursing help, Paul and I worked shifts. Our rule was "sleep only when the other's awake." Naturally, we have not slept on the same bed since Caleb's homecoming. Our sleep schedule is brutal, especially since I work weekdays 8am-5pm. There were days I slept only for two hours!!! Paul quasi-quit his job. His boss allowed him to stay and work 9am-1pm on Saturdays. It may not be much, but Paul's happy.
Caleb and Daddy stay home and I'm so totally in love with Paul!! He has proven to be a wonderful caretaker for both Caleb and I. 99% of the time, a home cooked meal awaits me for lunch and dinner. Paul and Caleb have bonded as well. At times when Caleb is super cranky, Dad can calm him down.
Work is work. They have accomodated me quite a bit and they are supportive of my home situation. I have made the decision that if my work ever interferes with my home life, I will do whatever necessary so it doesn't happen so.
To others, our daily life may be challenging, and it is... but it's also our way of life. We have accepted that our child has special needs and we will do all we can to provide for him. We are blessed everyday in many ways. We thank God for our little miracle baby.
