Today Sullivan is 14 months old and I refuse to believe it. Time just moves so quickly. Right now everything is so dramatic with Sullivan. He's happy and then it's the end of the world. Somehow it's the end of the world about every 5 minutes. Tears and tantrums are our life right now. But in between all of that there are wonderful moments. Like when he's talking or walking with his walker. When he's laughing so hard that his eyes disappear or when he's giving his infamous bear hugs. He loves swimming, playing with friends, dancing, and being outside. Sullivan also loves watching PBS. He loves pretty much every show which is nice because no matter when I need to turn it on, he'll be happy. His favorites right now are Barney and The Electric Company, which is way above his level but he likes all of the music they play and will dance while playing with his toys. It's super cute. I'm amazed at all the words he says right now.
He'll also parrot different names, but doesn't say them regularly. He's said Kaegen and EmilyGrace.. probably a few more that I can't remember. It always catches me off guard. We've had alot of fun watching the Olympics this week I'm surprised by how into the swimming and gymnastics I've been. Matthew thinks it's hilarious how much I've yelled at the TV. I'll be sad when they're over.
S hasn't felt well the last few days; I think we're battling yet another round of the stomach virus. I wish it would leave us alone- for real. We went for a walk this afternoon to get some fresh air. S has been enjoying his wagon rides.
And when we got home there was a surprise on our doorstep- a farm!
I posted on Facebook a few days ago asking if anyone had any farm animals that they didn't want anymore. I got some pretty cute responses. Apparently it wasn't a given that I wanted PLASTIC farm animals. A friend contacted me a few days later though and said she had found me a farm and a few animals and that they were free. Score! He loves it.
He's been showing me the animals and telling me the ones that he knows and asking me the ones he doesn't. He's a little obsessed with sorting them though. For whatever reason they must all be piled in this one area of the barn.
There's not much going on around here these days, just the norm. Sullivan is talking like crazy. Some days I wonder if all this speech therapy was such a good idea! I'm joking of course. S has actually been discharged from speech with Ms. Jan. He still has speech with TEIS but Jan felt that he was doing great and that we just didn't need her anymore. I agree that he's doing well, but at the same times it scares me to drop therapies. It's all we've ever known.
We saw Dr. Kelly this week. It was a very quick appointment. He felt S's noggin and agreed that it was too narrow. He ordered a CT and we're currently waiting on insurance to approve it. They were supposed to have approved it by now so I called and check on the status of things today and was told not to expect a call until at least Friday. More waiting. It's hard wondering whether your child will have another massively invasive surgery. I actually think the waiting is harder the second time around. That's the nature of the cranio beast though. It never ends. His head will change until he's in his teens for better or worse and it's just something we'll have to deal with. Compounded on that is the likelihood of him having a fill-in surgery. The chances of that are much higher if we have another CVR. That's a hard reality; it's especially hard for my mom.
We've been enjoying more time outside these days since it's not quiet as hot in the evenings. Our next door neighbors have a new husky named Lola, and S likes to visit her. She's very much a hyper puppy and he thinks that's hilarious.
I can always tell when I'm more stressed out because I take fewer pictures. I hate that about myself. It's not like we're not still living and doing fun things. We're still going to the pool, and to church, and making neat things. I've been spending tons of time with my cranio support group moms (online of course), and much of my time the past week has been spent making a flyer for Vandy to pass out to new patient families. I'm pretty proud of how it turned out.
My Photoshop was so rusty, but I'm thrilled that the moms in our group loved it and even more thrilled that Dr. Kelly's office, the PICU nurses, and the child life specialists have agreed to hand them out! Abby and I are loving how much our group has grown in just a short amount of time. We have 21 families now! Our hope is that between all of the different areas handing them out that we will reach all of Dr. Kelly's cranio patients and their families. If I can find any reason for all of S's cranio battles I suppose it's this. We're helping others, baby.
*Update! Our CT scan is scheduled for next Thursday. We'll meet with Dr. Kelly the following Monday to get the results.
So today marks 1 week since I stopped sleeping. I feel like utter poo but I did get my office semi cleaned out today so hooray! It's really hard on everyone when I get like this.. I just wish I could shut my mind off and sleep. Ambian is looking super good right about now. Might be time to talk to my doctor.
Today I had one of "those" kids.. you know the ones. By the time church started I was happy to drop him off in the nursery and go to my class. I thought I was going to lose my mind. The whining and the tantrums are increasing and it terrifies me. Holly and Jan could barely work with him in therapy today and I just didn't even know what to do. When he gets going there is no making him happy; HE has to decide when he's done. I don't know if he's just being a 13 month old or if the pressure is back. He was 5 1/2 months old when he had surgery and while that was 8 months ago I still clearly remember what life was like then, and it wasn't sunshine and roses. Monday's appointment with Dr. Kelly can't come soon enough for me.
I feel like as the day progressed I just got more and more irritated. I wasn't irritated at anything in particular, just everything. I'm going to have to apologize to the poor girl at McDonald's the next time we're in there because I wasn't very nice when we were ordering. Why is it that they change their menu every week anyway?! When we got home from church I just started cleaning. I clean when I'm stressed out or when I'm angry. I scrubbed the whole bathroom, cleaned the kitchen, washed a load of laundry, and mopped 3 rooms before I finally decided I was calm enough to sit and get lost in the computer for a bit. I feel like there are so many things bugging me right now so I'm going to do something crazy and just list them:
1. Having to start over on my Metformin regimen and deal with side effects again.
2. Sullivan's medical problems and not knowing how to help him.
3. Matthew's schoolwork and the time it takes away from our family.
4. Trying to figure out how we're going to pay our bills.
5. Having my parenting judged by people who have no idea what it's like to parent a child with special needs.
6. Matthew's unemployment.
7. Being so physically tired.
And since I'm in a listing mood, here are an equal number of things that I'm thankful for:
1. That I've lost 27lbs in the last couple of months.
2. That Sullivan has great doctors and therapists who push him and want the best for him.
3. That the seizures are quiet.
4. That Matthew is graduating this Fall (Lord-willing!).
5. That I now have a part time job.
6. That we have each other and a roof over our heads.
7. That God hears our hearts and answers our prayers.
It's been lively around here the last week or so. Sullivan fell and banged his head last Thursday and has possibly damaged one of the plates. So we're off to see Dr. Kelly next Monday to check things out. When I talked to Dr. Kelly he was actually less worried about the plate and more worried that the back of Sullivan's head has narrowed to about how it was pre-surgery.
If it hasn't refused we might be looking at a helmet or a wait and see approach.. if it's refused we'll be looking at another CVR. We've all had a nice short round of the stomach virus that's going around our town, too, which was especially wonderful.
In other news Sullivan can and will now show us where his belly is!
He's very proud of himself. He's also figured out the sign for "more" but would still rather whine to get what he wants. Sadly I usually give in because in all honesty he's a pretty whiny kid and he wears me down faster these days because of the stress from his noggin.
It's still in the high 90s here and it's really just too miserable to play outside during the day. Last week our church had VBS; I made several different sensory activities for my preschool craft class so I decided to pull them out for Sullivan today. This morning we played in the cereal sensory box. I loaded it up with familiar toys this time but next time I bring it out I'm thinking items from the kitchen (spoons, a bowl, cookie cutters, etc). S liked the box alot. He would get handfuls of the cereal and drop them back in the box or throw them up in the air. He liked finding all of his toys and examining them.
He played in the box for almost an hour which makes it gold in this house. I didn't even care that he made a mess because really it wasn't that bad.
It's unsweetened cereal so it isn't sticky at all so clean up wasn't too big of a deal. The cereal is pretty easy to scoop up and was put back in the box for next time.
This afternoon's activity was play dough. I made tons of play dough last week for VBS and it was a huge hit. Lots of people have asked for the recipe; I got it here. Sullivan's PT & ST team teach to get the most cooperation out of him so I thought I would pull from their bag of tricks and try a little of the same. I put the play dough on the top of his wooden toy box so he would have to pull up and stay standing to play. He did great!
Sullivan liked picking off little pieces of play dough and making his hand print. He started making impressions in the play dough with the bowl so I got out some cookie cutters. The only plastic cutters that I have are Easter themed.. I might need to work on my collection.
He played for it for quite a while before sampling a bite. I don't think it was very tasty.