Up about a Pound!

I had to post pix of Addy first thing this morning, she had the cutest bed head!! We went to the pediatrician this afternoon and her central line has now been removed! Yeah! You can also see that the bruise and scabbing on her head is a lot better too. People keep asking me if she fell and hit her head. Uh, no, she's immobile! She also weighed in at a whopping 19lbs. 5 oz. so she has just about put back on one pound of the three she has lost this month. We are to continue her 20 hour per day feedings for another week. He doesn't want to put too much on her system since she is so fragile. So maybe by next weekend we will be able to start consolidating down again.








She really had a good first day with her nurse. Some people have asked me about this nursing situation. Okay, this may be lengthy but informative. When we brought Addy home I asked about home health and the dr. said that she didn't need it because anyone could be taught to take care of her (she had O2 24/7, colostomy and mucous fistula, and fed through her j/g tube 20 hours per day). He also said that it would cost my insurance company way too much money. Okay, so we trudged on and found a babysitter. Many people ask what the challenges of having a child with special needs has been for us. Childcare has been the biggest concern. It was very difficult to find someone to care for Addy with all of her needs, but fortunately last year we did. As I mentioned yesterday, this year has been a different story. (BTW by years I mean August through May when I work). Fortunately she did get into the daycare the beginning of January, so once again we found a perfect place for her. Well I found out this week through the doctor referral and whatnot that Addy actually would have qualified for nursing all along since she has chronic medical needs. Medicaid is paying for this. Addy does not qualify for Medicaid due to our income, she qualifies in Missouri because she has Down syndrome. Her Medicaid (supplemental to our private insurance) is covered through her adoption subsidy so she would have gotten it either way. When we chose to adopt a child with special needs. I knew nothing about any of this. We did not adopt Addy for the "benefits". I got upset when I found out that we could only get help for Addy since she has Medicaid. We just wanted a couple of weeks to get Addy healthier before going back to daycare, which was ordered by the doctor. I wondered where is the help for the typical middle class family like ours? What about all the millions of people that need help and can't get it because they make too much, but not enough to pay for thousands of dollars in care a year? If she didn't have the MC then we would be out of luck. No nursing, no respite care, no nothing. Sad isn't it? Well, so many people are very angry with Addy's doctor since he didn't pursue this when we brought Addy home. Yes I was angry too since paying her childcare has been unbelievably expensive (however since the adoption, it is covered by subsidy), but we knew we would be paying for childcare, but it has been SOO stressful. Finding someone that can take care of her has been tough. But I am a Christian and I am choosing not to be bitter, or angry. I am grateful. I am grateful that my child that pretty much has zero to no immunity will now be cared for in our home with a qualified person to take care of her medical needs (not just feeding). We are still very hopeful that she can return to daycare to socialize and be exposed to some germs to try to build an immunity, but we just don't know right now. I am thinking in another couple of weeks we will be able to try a couple of days a week. So now, we just thank our good Lord that he has blessed this child by providing what she needs when she needs it.