This past week Nic had both his one year check-up and his three month social worker visit. I'm pretty sure we "passed" both.
Nic continues to be as healthy as a horse with a possible case of sickle cell disease. He is growing, and is at average weight and above average height. He has taken his first steps, and is keeping me on my toes with his shenanigans. We found a very nice pressure mounted baby gate this weekend at an awesome discount (love us some garage sales) and installed it in front of the kitchen. Now I can rest easy that Nicolas isn't pulling every single can out of our cupboard...his former favorite activity. He still has access to our book cases, which he rearranges on a regular basis, so he still has outlets for fun and mess-making. Why won't he just play with his toys?
The social worker came and asked her questions, and didn't seem to find anything wrong, so I'm assuming we are fine on that count. Nic's adoption will be finalizing next month, and she assured me that she sent in her report so everything that we are in charge of for that event is completed. I am very excited to receive that ruling. Also, she stayed only in one room, which was awesome because I hadn't had time to clean the kitchen and our bedroom is messy...but she doesn't know that. Besides, fit parents can still have messy houses, right?
Our last bit of "news" - Nic's hematologist got back to us about the "conference" they had on Nic's case. Everyone agrees that Nic either has sickle/HPFH non-deletional or sickle cell disease. So definitive. That first bit of information means that they have ruled out the Ghanaian variant and those related to it, but that they still think HPFH is possible because there are rare types caused by point mutations that are difficult-to-impossible to detect with DNA tests. We are at the same place as before - they will test in six months and maybe decide, maybe not. The way the wind is blowing I'm guessing not...but I could be wrong. The good news is that everyone believes that if he has sickle cell disease that it will likely be a more mild version, simply because he has not had any issues thus far and continues to enjoy such good health. People who retain/maintain higher levels of HPFH who have SCD tend to have fewer problems than those with low levels. They are trying to interest a researcher at a University in his case, to see if someone will be willing to spend more time/money looking at his DNA for the purposes of research. We are praying that someone takes an interest in his case so that we might be able to have definitive answers.
I've been canning again this week - this time green bell pepper jelly. It looks very ugly because I am grossed out by the idea of adding food coloring, but it tastes so yummy - sweet and peppery without overwhelming spice. It set a bit harder than I wanted it to. Anyone else using the new Ball bulk fruit pectin and feel like you may be adding too much based on the canister instructions? Or maybe this is just one hard jelly. It spreads fine, so I'm not that worried about it.
Nic continues to be as healthy as a horse with a possible case of sickle cell disease. He is growing, and is at average weight and above average height. He has taken his first steps, and is keeping me on my toes with his shenanigans. We found a very nice pressure mounted baby gate this weekend at an awesome discount (love us some garage sales) and installed it in front of the kitchen. Now I can rest easy that Nicolas isn't pulling every single can out of our cupboard...his former favorite activity. He still has access to our book cases, which he rearranges on a regular basis, so he still has outlets for fun and mess-making. Why won't he just play with his toys?
The social worker came and asked her questions, and didn't seem to find anything wrong, so I'm assuming we are fine on that count. Nic's adoption will be finalizing next month, and she assured me that she sent in her report so everything that we are in charge of for that event is completed. I am very excited to receive that ruling. Also, she stayed only in one room, which was awesome because I hadn't had time to clean the kitchen and our bedroom is messy...but she doesn't know that. Besides, fit parents can still have messy houses, right?
Our last bit of "news" - Nic's hematologist got back to us about the "conference" they had on Nic's case. Everyone agrees that Nic either has sickle/HPFH non-deletional or sickle cell disease. So definitive. That first bit of information means that they have ruled out the Ghanaian variant and those related to it, but that they still think HPFH is possible because there are rare types caused by point mutations that are difficult-to-impossible to detect with DNA tests. We are at the same place as before - they will test in six months and maybe decide, maybe not. The way the wind is blowing I'm guessing not...but I could be wrong. The good news is that everyone believes that if he has sickle cell disease that it will likely be a more mild version, simply because he has not had any issues thus far and continues to enjoy such good health. People who retain/maintain higher levels of HPFH who have SCD tend to have fewer problems than those with low levels. They are trying to interest a researcher at a University in his case, to see if someone will be willing to spend more time/money looking at his DNA for the purposes of research. We are praying that someone takes an interest in his case so that we might be able to have definitive answers.
I've been canning again this week - this time green bell pepper jelly. It looks very ugly because I am grossed out by the idea of adding food coloring, but it tastes so yummy - sweet and peppery without overwhelming spice. It set a bit harder than I wanted it to. Anyone else using the new Ball bulk fruit pectin and feel like you may be adding too much based on the canister instructions? Or maybe this is just one hard jelly. It spreads fine, so I'm not that worried about it.
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1 comment:
I am praying for Nicolas and his health!
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