An update on Emma: Our March 12th court date was postponed. The Supreme Court did not get our file back to admin court before the hearing date, so it was delayed until our file was returned. As of Friday, our file had made it back to admin court and we are now waiting for a new date. Currently, this is not holding anything back. The government is currently in turmoil; the Prime Minister resigned, forcing a temporary government to take office until they hold an election on May 12th. This could be good for us, but not so good for those waiting for signatures and court dates so they can bring their children home. The government is basically at a stand-still now until the elections. The reason this may be to our benefit, is with a new Prime Minister, comes a new Minister of Justice and new Deputy Minister, and a new International Adoption Council. The Deputy Minister and IAC are the two entities blocking our adoption of Emma. There is no guarantee a new DM and IAC will approve us, but we already know the old one won’t and our chances are better with a new set of eyes looking at everything. I am praying the new MOJ, Deputy MOJ, and IAC will have a heart for the children, and enough common sense to do what is best for them, instead of making up rules that ultimately hurt the ones they are supposed to be the most concerned with.
Cara has now been with us for six weeks. In one sense it seems like forever, and in another, it doesn’t seem very long at all. I know I can’t imagine life without her now!
She had an appointment with the gastroenterologist about 10 days ago. He did a double-take when he walked in the room, met her, and then looked at her medical file and saw her age. He asked me, “Is this right? She is really 6 years old?” I confirmed her date of birth, and he could not quick shaking his head. When I explained that she had been diagnosed with digestive Cystic Fibrosis, he was very doubtful. He explained that digestive CF is VERY rare, and he suspected she might have another pancreatic disorder. He ordered blood tests, stool samples to test for vitamin deficiencies, and a repeat of the sweat test she was given in country when she was younger. The sweat test measures the amount of salt in her system. Children with CF, have a much higher salt content in their bodies. He asked if she tasted salty to me when I kissed her, and I told him it was not something I’d ever noticed. He then called and spoke with a pulmonary specialist, explaining that if there was anything “off” with her sweat test, he was going to refer us to the pulmonologist to check her lungs. They two doctors discussed they type of digestive enzyme they wanted her to take, and after receiving that prescription, we were off to the lab for the tests. We were very lucky to be able to get them all done that day. The sweat test is usually something that has to be scheduled, but the next person coming in had cancelled, so Cara was able to get it done right away. They drew her blood, and we took her to the cafeteria to eat so she could produce the remainder of the tests they needed. She was very cooperative! J Now we wait for the test results.
Two things I know already. She is deficient in the fat soluble vitamins. I know this because the pharmacy called to tell us the doctor had faxed in a prescription for those specific vitamins. I also know the enzymes are working! Prior to taking the new meds, her stools were mush, and full of oil, a result of not absorbing the fat soluble vitamins. They now have form and the oil is completely gone! This is a huge improvement. This means she is now digesting more nutrients, and consequently eating less food.
Another bit of progress is that she has now become “picky” about what she eats, and she eats less. This shows she is now secure in knowing she has enough food available when she wants it, and she no longer has to worry about being hungry anymore. When I fix her a meal, she will always point to something and ask, “More, mama?” I tell her there is more after she eats what is on her plate. She used to test me and always ask for more, usually pushing it away after taking a bite or two. Now she will ask for more, I will tell her after she eats what she has, and she is satisfied knowing it is available. Rarely will she ask for more if she doesn’t want to eat more.
She still has very intense tantrums, and believe me, they make me weary. I have her on a tighter schedule now, making sure she gets a nap every day if possible. Sometimes doctor appointments interfere, but she doesn’t fall apart in the late afternoon as much if she gets a nap.
I spoke to the school district last week to get all the information needed to find out where she is developmentally, and get a team together to evaluate where she is and what services she will need besides help with English. Technically, she should be entering first grade in the fall, but I don’t see her being ready for that. She has had no schooling at all yet, and we are just working on the basics here at home; letters, numbers, colors and shapes. After speaking with the school psychologist, it looks as if we will get a team together after the first week in April to evaluate and get a learning plan together for her. I don’t want to hold her back too much, but I sure don’t want to push her into something she isn’t ready for. I would love to have her start Kindergarten in the fall if she is ready for it. But right now, I see a child the size of a 3 year old, who is globally delayed. She has undeveloped fine and gross motor skills and is cognitively about 3 ½ to 4 years old. She will most likely catch up at some point, but I hate to see her in special education classes if holding her back a year will help her excel instead of always lag behind. I hope and pray we will get some answers as soon as spring break is over.
Until then, we continue to work on colors, numbers and alphabet, painting for fine motor control, learning to push the pedals on a bike for gross motor skills, and just enjoying time together.