Changes are in the air. Is it because it has been awhile in the waiting? No that can’t be it. Is it fall? Who knows.
I still haven’t gotten a plan for Lily’s wean and add of the Vigibitrine so I put a call in the AM and it was much cheerier than my last, lets hope we will have a plan come tonight. She has had one a day since Monday, and I think ok maybe we can just deal with the one a day, but then I see the seizure and it is big. It is hard. It is intense. I see Lily’s three year old sister holding her hand and telling her it is ok and that she loves her and I get mad. That is not how life is supposed to be! And even if it is one a day, it is one too many. I see how wiped out my baby girl is and it is not fair.
This morning our stupid puppy ran out and just went crazy, I couldn’t get her back in, then when the bus pulled up I had to run and bring Lily out and while I am chasing the puppy, Lily goes into a seizure right there in the driveway. I forget the puppy and talk to her, Andi rubs her and when it is finally over she is spacey and tired and I have to put her on a school bus. It just breaks my heart. Then I can’t get the dog to come to me and I just start crying. I know I am pregnant and I even cry watching The Hills, but it was too much. I swear if I had a pound near by I would have taken that dog, dropped her off and never looked back. I had never been so frustrated and overwhelmed.
I know Lily just slept the ride to school and she will be fine once she is there, but I can’t, she can’t, we can’t have her go thru this anymore. I am so done.
Back to my point of changes. A few weeks ago I did some calling around looking to change from Lily’s center based therapies (I take her to OT and ST) to in home therapy. I have been taking Lily to 4 therapies all outside of the house on Mondays and I am getting bigger and soon I will have an infant along with Lily and Andi and I just won’t be able to keep up. Well God must have thought that was a good idea as well and opened the doors to not only an OT but a Speech Therapist that are able to come to our home, on the day I already have Lily out of school! Some people are on waiting lists for years! I did not think this would have happened so easily and I know this has God written all over it. But because these openings are open they start next week, so I had to let go of our OT and ST whom we all love and have been seeing for over 2 years. I had to call each of them today and apologize for this quick change. I know each kid they see puts food on their tables and I don’t take that lightly. I wanted them to have a good heads up to be able to find someone to fill Lily’s spot, but for my sake I had to take an opportunity that I know rarely happens. So anyway, I am sad to let them go. I am happy to have just made my life so much more simple. It is change. Change is scary. Change brings butterflies. Change, well is just that, it changes everything. But change can be good. This change is good.
Please keep us all in your prayers as we make this transition and as we make some med changes, I am praying that my gut is not wrong.
And maybe that someone steals our dog and gives her a good home.
Your such a good writer Kim. I’m sorry that Lily keeps having seizures. Not fair. It’s heart breaking. You will love the new change of in home therapies. I have never taken Emmie anywhere and I love it! It is such a nice break for someone to work with your daughter while you get a couple things done around the house or just sit and talk while nursing your baby in your own home is nice. Change is good and you will LOVE it! I am due for lunch. Let me know when you are available next and if you feel up to it anytime soon?
That’s awesome that you were able to get home therapy for OT and ST! If only every parent were as considerate and thoughtful as you in terms of letting the therapists know as soon as they can regarding changes. 🙂 But don’t worry.. I don’t think the center-based OT and ST will have problems with finding another caseload. At least where I am, there’s always a shortage of therapists and an overflowing amount of kids that need to be serviced (but sometimes can’t be due to scheduling)!
Sorry about Lily and her seizures, but congrats on getting home therapy. We recently switched to home therapy because it was starting to be too much going to all the therapy sessions at the clinics. Hopefully things will start getting better for you and your family 🙂