The last six weeks have been amazingly wonderful and incredibly stressful at the same time. On top of adjusting to having two children and the sleep deprivation that goes with a new baby (gah, I’m tired), there are several other life issues we’ve been dealing with as well.
I don’t think I’ve written about our specific living situation- basically, we had a contract on a house to buy but things just weren’t quite right and we walked away two days before Charlotte was born. We moved in with my parents that Saturday afternoon, and we went to the hospital just hours later. Being here has been wonderful- it’s a big house, my mom has been a huge help, and it’s close to Grayson’s school. We are currently trying to decide what part of town we want to live in, factoring in distance to Grayson’s school, his doctors, and Ryan’s school. And of course what we can financially afford. We actually decided today to go with a different realtor than we had been using, so hopefully she can help us find a house that fits our needs.
We are also changing some aspects of Grayson’s care. As I mentioned before, he now goes to his special needs school 5 days/week, which has been wonderful for him. He loves school, and is thriving there. We are also switching his therapy providers from the school district we were living in to the private therapy group that is in the same building as his school. He has his OT evaluation tomorrow morning. Now he will get OT, PT and speech on site during his school day.
We had the same nurse in our home taking care of Grayson since June. In the last few weeks, it became very obvious that she just wasn’t the right fit for G. She is a very nice person, but he wasn’t responding to her in a positive way and everyone was tense when she was here. I realized that when I was dreading the arrival of someone who was supposed to HELP make our lives easier it was time to make a change. It was awkward letting her go, and I felt bad because she truly loves Grayson, but I am so relieved to have that behind me. So we will be interviewing new several people and praying we can find someone who Grayson loves and I enjoy being around too. And as much as I want to be SuperMom and take care of both my babies myself, I’m trying to be honest and realistic about our situation- I can’t. I need help. I just need the right person to help.
Charlotte is now six weeks old and I’m really trying to get her on some sort of a schedule, at least at bedtime. Grayson’s bedtime is set in stone and that works really well for us, so I’m hoping we can do the same with Charlotte. She will probably always go to bed a little later than G, because he goes to bed SO early (5:45-6:00). Tonight, I bathed, fed and swaddled her, and she was asleep in her bed by 7:00- victory! I’m actually sitting on the couch, watching TV and blogging- ah, I’ve missed this.
This Friday, Grayson has an appointment with his Mitochondrial Disease specialist. We are taking Charlotte along because Dr. K said she would check her out. I really am not worried; everything about Charlotte is so, so different than it was with Grayson, and I truly believe she is healthy. However, I know it will be a nerve wracking few minutes during the exam. Unfortunately, I do have several things to discuss with her about Grayson. It’s sad and scary, but I do see progression of his disease. His seizures are worse even with increasing the dosage of his medication. He is so incredibly stiff, and even diaper changes are exhausting trying to pry his legs apart. His stiffness is also really bad at night, while he’s sleeping- it’s so sad seeing him not being able to relax, even while sleeping. And his balance has regressed- he topples over frequently and bangs his head on the floor while trying to get around.
I know this is just a crazy season in life and we’ll get through it. I’m really trying not to get overwhelmed and focus on the positives- I have two beautiful babies, we have a roof over our heads and support and help are available. We are going to be okay.
I'm amazed at your drive every time I read your blog but then I remind myself that you are a mother and this is what mothers do. If I could, I'd give you a gold star for doing an amazing job Elizabeth.
Love you girl. You are doing an amazing job. Praying for you always.
Hugs dear friend.. I lift you up.
Amazing that you have C down and asleep in her bed at 7pm. That is an impressive feat right there! Whoo hoo! I know this is an uncertain time, but you are at a safe and helpful place, enjoy it and take the house search when the time is right. I hope that Friday's appt gives some answers and help for G and a sigh of relief for C. Love to you all-
I'm sorry that Grayson is showing some signs of the mito progressing. It's so hard seeing new/worse symptoms appear. My mom has MS, and every time we see her, there's something "new" happening that wasn't happening before, and it's hard to see. I am sure that this is just impossible to watch being his mom.You are so brave and strong. I am so inspired by you!
I think you are SuperMom. Even Super Heros have people/sidekicks who help. Trust me, as many superhero cartoons as my husband watches, I ought to know 😉
You are going to be ok but it's also ok to be stressed about all these changes. Prayers for you and your family as always!
Good luck with all of the changes! I hope you find someone who is a perfect fit!
Oh boy. I hate change. But it's always nice to be on the other side, and it sounds like you're at least moving in a positive direction. I'll be letting that nurse go was hard and awkward! But I'm so glad you did it! Having the perfect home nurse makes ALL the difference!!!