Hi,
Well, my temper tantrum is over. I feel better now. Haha! Thanks for listening, and thank you for all your comments and messages of love and support! I can't tell you how much you help me through the hard times!
On Wednesday afternoon, October 18 (after I posted my blog) Harlie's speech therapist came by to visit. It was such a fun visit! Harlie and her talked about the class and Harlie's classmates and I feel like I got a better picture of her interactions with them. For example, one of her classmates calls her "little and cute" and Harlie is not a fan. She does not like to be called that. Of course, I was like 😬 because she IS little and cute. Haha! Gotta remember to keep that to myself. Harlie said that one of them is obsessed with her. I looked at her speech therapist and she said, "that's true."
So, I think Harlie feels liked/loved in school. That clearly looks different than what I would need to feel liked/loved. I'm afraid it will always make me sad that Harlie doesn't have traditional friendships. I need to figure out a way to be okay with how different Harlie's life is compared to what I would like it to be. She's never going to be free from her medical stuff or "healthy" as the general population goes. I mean, how does a parent learn to be okay with her child NOT being healthy - like EVER? Isn't that the first thing you want when expecting a baby? There are a lot of losses when you have a child that can't breathe, eat, speak, etc. without major assistance - or can't do it with all the assistance in the world!
For so many years we went to all the therapies - trying to get Harlie to a better functional place. Now, at 17 years old, we don't go to any. Whatever she gets, she gets in school. That's it. At some point, we have to come to a place of acceptance, and that is HARD. I had to have a conversation about that with Harlie just the other day about her learning to eat. I think she needs to come to a place of acceptance. But, I can't do that for her. It's hard. Now I'm not just dealing with my grief, or Tom's, we are dealing with hers, too.
On Thursday afternoon (the 19th), Harlie's teacher dropped off cards that her classmates made for her. Harlie enjoyed reading and looking at those. Harlie is in exceptional education classes, except when she is in her elective class. So, when I refer to her classmates, I'm talking about her exceptional education classmates. So, don't picture her in a typical 10th grade classroom.
Thursday was a beautiful day, so I asked Harlie if she wanted to sit on the back deck for a little while. I got out the cushions, cleaned the deck up, put water in the bird baths and we hung outside. Murphy came home from class and joined us. I loved it. It really is the little things in life that make me happy.
That evening, Caylee and I started to remove her sutures. She has four incisions and we removed the sutures from two of them without any problem. They were the ones in front of her ears. We started to remove the sutures from her right side jaw line, when it looked like the skin was opening up more than we were comfortable with, so we stopped. I had to "chuckle" at me pulling the sutures tight and watching her skin close as Caylee tied a knot. Oh, the things we do that are so not normal parent things. We decided to give them one more day. I was so afraid that her jaw was going to open up and get infected. So, I texted Dr. Strauss (a plastic surgeon here - he took her into the OR way back during her bleeding incident after she got the TMJs put in the first time in April 2021) and asked him if he could take a look at her. He told me to bring her in the next morning. So, I did. He removed the rest of the sutures and said that her incisions look great. Whew! He actually said that she looked GREAT for being 10 days post-op from that surgery.
On Saturday night, the 21st, Rooney had a rough night. He just looked like he was in distress. He was walking hunched over with his tail down. I felt so bad for him, so I went to give him one of his favorite treats. He put it in his mouth, then spit it out and went and kind of gagged. Um, that is NOT okay. He's NEVER turned down any food - ever. So, I tried peanut butter. He walked away. WHAT? We really debated taking him to the emergency vet. He did not look good at all. Tom said that at dinner he tried to give him a piece of steak/fat, and Rooney wouldn't eat it. Tom felt so bad for him that he let him sleep with us that night. I was so worried about him! But, we just got back from Boston where we just spent several thousand dollars - we just don't have the money for an emergency vet appointment where we go in not knowing what could be wrong. Plus, he did eat dinner. So, I told myself to calm down and wait and see what he did with breakfast.
Sunday, the 22nd: He ate breakfast okay. Tom had to put his food on the food mat instead of in the bowl because he was having a hard time getting it out of the bowl. Something seemed wrong with his tongue. Pug-o-ween was that afternoon and Harlie's costume really needed both Pugs. Tom built a barn door for the basket on her chair. The dogs were chickens in a chicken coop and Harlie was a farmer. I felt bad taking Rooney if he wasn't feeling good. He's 11, just in case you were wondering. Since he ate, and didn't seem as bad as the night before, we thought that maybe it would be a good distraction for him to go. So, we took him. It perked him up! He had a great time and was very social. His tail has been well curled ever since. He's back to eating treats and he looks good. I have no idea what came over him that night. But, for now, crisis averted. Thank God. I did NOT want to deal with that right now.
I'm going to stop now and start a new post for the next week, since Harlie had a couple of appointments.
Much love!
Christy xo
