This should definitely prove to everyone that blogging is not for me. It's been four months since my last post and since then so much has happened.
Claire finally came home a week before Thanksgiving. Our wonderful case worker at the hospital was able to have all of our home health equipment and accessories come from one company, which makes it less of a headache...sometimes. She was also able to find a home nursing company willing to take on our case. Since then we have found a wonderful nurse to cover three day shifts (while Adam is in class), a nurse for the other two weekdays (not sure about her yet) and two days a week overnights are covered. It was an adjustment to get used to, but a relief that we didn't have to have family stay with us in order to have care for Claire.
Claire finally came home a week before Thanksgiving. Our wonderful case worker at the hospital was able to have all of our home health equipment and accessories come from one company, which makes it less of a headache...sometimes. She was also able to find a home nursing company willing to take on our case. Since then we have found a wonderful nurse to cover three day shifts (while Adam is in class), a nurse for the other two weekdays (not sure about her yet) and two days a week overnights are covered. It was an adjustment to get used to, but a relief that we didn't have to have family stay with us in order to have care for Claire.
I'm still struggling to get us approved again for medicaid. That was cut off in December due to us making about $200-500 too much a month. The waiver programs are great, but it seems forever to receive approval. I have pre-approval for most, but for some aspects of the medical supplies, the provider is getting antsy and is looking for me to pay. I hope they, and the nursing company can wait one more month. I figured out the cost for our portion of nursing after United Healthcare pays their part, $2002/month! I cannot afford that on one paycheck and a husband going back to school.
Oh yes, we decided that since the job market was not improving as hoped that we would send Adam back to school for a bachelor's degree in Industrial Design. The program will take him a good two years, so he should be done by the end of 2011 (fingers crossed). The first semester went really well and gave us a chance to meet the amazing, supportive people who will be teaching him. They were more that understanding and encouraging when he could not attend class due to Claire's surgeries, set-backs, and release from the hospital. His second semester just started and we are feeling optimistic.
Oh yes, we decided that since the job market was not improving as hoped that we would send Adam back to school for a bachelor's degree in Industrial Design. The program will take him a good two years, so he should be done by the end of 2011 (fingers crossed). The first semester went really well and gave us a chance to meet the amazing, supportive people who will be teaching him. They were more that understanding and encouraging when he could not attend class due to Claire's surgeries, set-backs, and release from the hospital. His second semester just started and we are feeling optimistic.
Getting back to Claire, we had our first pediatrician appointment the day of release, which only led us to our first opthamologist appointment less then a week later. The diagnosis was an unexpected one, bi-lateral cataracts. Within the next two weeks, both eyes had been operated on. Since, things have gotten better. She has started wearing her daily contacts, which is not a fun battle. It appears that she is seeing more, but we are set for one more operation this Friday, to remove some scar tissue from her left eye. Not uncommon, but still nothing I am looking forward to.
Her development is slow, but progressing. A physical therapist comes to the house twice a week and a occupational therapist should hopfully be starting once a week very soon. We have another swallow study set up for next week to determine what types of solids she'll tolerate orally. I'm still struggling to get her take anything orally. My minor break-through came at the beginning of December when she started sticking her tongue out on her own to taste the food. It takes about 45 minutes to get two small spoonfulls in her, maybe. :-)
Overall she is the joy in my life. I couldn't ask for a sweeter girl. She doesn't complain, she's self soothing and entertaining, but that doesn't stop mom and dad from absolutely spoiling her with our attention. Saturday mornings are the best when you can put her on her travel tank, take her down stairs and read to her while sipping my morning coffee. Now that she's home our family feels complete.
Fingers crossed that I remember to post again after this week's surgery, lol maybe we should cross our toes too.
