Since I've posted here. Things have just been a little busy around here.
Christmas was very nice. We spent it at home celebrating as a family. I was very sick on Christmas Day. I didn't know it until the next day, but I had pneumonia.
Santa treated the kids very well and as they were opening presents, I was taking ornaments off the tree. The problem with getting a real tree is that you don't know if you're bringing anything else home with you. Unfortunately for us, we brought weevils home. When they started dying from the heat in our house, they started to litter the floor. Of course that didn't start to happen until Christmas Eve. It was very exciting (said with sarcasm).
Rob's parents came down, but they weren't feeling well either. We missed them though. Meredith came down with the flu. Thankfully she wasn't hit to badly. And she's the only one who got it. Thank goodness.
Sean.... Mr. Low Immunity stayed healthy. Go figure. We're still trying to find our way with this one. I may end up going back to NYC to visit with an immunologist to get some answers.
Sean also met with his new cardiologist. We found out that his pulmonary valve will definitely need to be replaced. It is allowing 100% backflow at this point. Dr. Greene has said that it's expected and we knew it would probably happen. We were really hoping it would've taken longer. Dr. Greene said not to worry about it. That his ticker was functioning just fine & wouldn't affect Sean at all.
His right ventricle is slightly enlarged and as he gets older, it will get bigger. When he's a teenager, he will have the valve replaced (probably by catheter) and the size of his right ventricle should immediately go back down to a normal size.
Our new year celebration was quiet and that was a good thing. We were supposed to goto a kid friendly party, but because of Meredith's flu we stayed home. It was just as well. We drank a few glasses of wine in our pj's while watching Dick Clark's Rocking Eve. We had fun watching the top 30 artists made famous by Dick Clark.
Next week we are meeting with a new geneticist. I wasn't thrilled with what I was hearing about the Charlotte area geneticists. So we chose a geneticist near Charleston. So far he has been a wonderful man with lots of helpful information. We're not seeing him because we need to know anything about Down syndrome. There are no answers for the questions we have at this point.
We're going to discuss how Rob & I both having the MTHFR mutation affects us in the future, our children and any future children. Rob tested positive for one copy of the A mutation and I tested positive for two copies of the C mutation.
Dr. Google has provided some information, but has posed more questions than answers as far as I'm concerned. What prompted us to get tested? There have been studies published suggesting that a person who has a mutation of that gene can have children with Down syndrome and people with tetralogy of fallot, independently. And that can come from either the mother or father and have an effect.
In other words, if Rob was the only one with the mutation, our children would still have a greater chance of having those 2 things, as well as many others. Each different mutation of that gene (there are be 40 known) can bring with it different effects. Having one vs. two copies also brings different "risks" or effects. Having one copy of two different mutations can bring still other effects. At least these are the suggestions.
Anywho... Rob & I have a child who has Down syndrome and tetralogy of fallot. Because tetralogy is generally not associated with Down syndrome (not like AV Canal), it stands to reason (at least in my head) that our MTHFR mutations could have played a role.
And if that is the case.... I wanna know how it will affect my kids, my future kids and us going forward.
Sean had a gross motor/physical therapy evaluation. I was not happy with it AT ALL. It seemed that when E came in, she had some preconceived ideas of what Sean's capabilities were. And Sean seemed to pick up on something about her. He didn't respond well to her; as he has to every other person that has come here to either evaluate or play with him.
At one point she said 2 year olds have a hard time conceptualizing things and 2 seconds later put a yellow duct tape "thing" meant to be a balance beam down on my floor & expected him to know what to do with it. Um.... he has no idea what you're asking of him if you don't tell him. He won't attempt to walk on tape that is folded and everything else. He did walk next to it, but she was to busy chatting to pay attention.
She never asked me what he could do, whether I had witnessed things that he wasn't demonstrating for her like EVERY other evaluator before her has. She asked me whether I wanted to know about his functionality and seemed annoyed when I told her he functioned just fine.
Now... I do not have my head in the sand when it comes to Sean's abilities. I know Sean is "behind" typical kids his own age. I know he is immature in his speech and I know his coordination is lacking. He's also as stubborn as they come! My kid!? Never!?
So I calmly asked how "behind" he was. E asked, "compared to a 30 month old with Down syndrome or a typical 30 month old?" I explained that Sean is in a class with typical kids. He is the only child with Down syndrome. I want for Sean to strive and be expected to "fit in" with those kids as he gets older.
Many parents do not believe in that. And that's fine. Whatever works for you & your family. Please don't judge me that I want my kid to fit in with his typical peers. In much the same manner that I want Meredith to fit in.
She rated Sean at between 11 & 15 mos for gross motor and then gave us some ideas for helping him with stairs and jumping. Um.... I have never met an 11 month old that would be working on going up & down stairs upright on their feet. Which is what would be added to his IFSP as a goal. In fact at 15 months, Meredith wouldn't even so much as look at stairs to go up on her feet. So something doesn't add up there.
After discussing it with his service coordinator, Sean is getting a new evaluation. He will not be retested on things he did perform and that's fine, but come on.
Both kids are doing well in school. Thank goodness.
Meredith has reached a point where she's picking up on different things from different kids. It has been allowing a lot of conversation about what various words mean and how they can be hurtful. I don't wanna shield her from "bad" words. She's going to hear them. But I want her to know how they make people feel when they're spoken. And how the hurt people feel can never be taken back.
It started with her not wanting to goto dance class which is totally not like her at all. She wouldn't tell us why. Then the other day Meredith and Sean were playing in the kitchen with their new play kitchen and I heard Meredith ask, "What are you a moron?" I was caught so off guard I didn't know what to do. Especially since moron is not a word in my vocabulary. I will and do say a lot of things children should probably not hear, but that's not one of them.
When I called her over, I asked her where she'd heard it and she immediately started sobbing. It was futile to try to talk to her about it then. So I asked her if she knew what that word meant. She said, "no." I told her that it meant stupid or not smart and calling someone a moron was calling them stupid. I asked her if she would like if someone called her stupid or not smart. And she started to cry and said, "no. that it would make her feel bad."
She still wouldn't give up the info I wanted though. Was her teacher calling people morons? Was a child? When she was calmer, she explained that there was a little girl in her class that says "ugly things" and sometimes says them to Meredith. She said she's gotten in trouble by the teacher for saying them back. So I let Meredith know that she shouldn't say "ugly things" back to anyone. If someone is saying ugly things to her, she should get up & walk away. She should go play with someone else. If her teacher asks why, then she should tell her she doesn't have to listen to ugly words and be called ugly things.
I told her that her teacher would understand. And then I spoke with her teacher and let her know that Meredith wasn't being defiant if she got up and walked away from an activity and what I had told Meredith.
I'm actually happy that it allowed us an opportunity to talk about it. I want to give my kids the tools they need to actually handle situations that make them uncomfortable. I don't want to shield them from things they will inevitably have to deal with. And that includes people using words that will upset them.
Phew.... that was some update. I really have to be better about getting on here.
As usual, our new year is proving to be quite exciting already. And it's only going to get more exciting if we continue on this trend.
