Anybody home? Yes! I am! And we have lots to catch up on! First and foremost, I wanted to announce the long overdue winner of our giveaway! Stefanie! Congratulations! I’ll be contacting you soon to work on getting your prize all set up!
Second, I am so sorry for not posting sooner. The worst of the adjustment period seems to be over for us and I’m hoping that the next few months we’ll avoid surprise surgeries and unexpected setbacks and get to finally see what our new normal looks like. We are also trying to get a more reliable internet connection at the house so I can blog more often.
It takes so long to upload a basic post that it hasn’t really been realistic for me to do much. But now that we’re finding a groove, I’m ready to get back to it and a reasonable internet connection will allow that to happen! It will also allow me to start uploading pictures again! If there’s something that you’ve been dying to know about how our family’s doing please comment or send me a quick message and I’ll put it on the docket for posts. Hope everyone has had a wonderful summer! It’s good to be back!
Hope is out of the hospital, she’s doing wonderfully. We are still working through some issues though. The catheter that drains fluid from her brain became infected, and the bacteria was present in the spinal fluid of her brain. Life threatening stuff! But we have the amazing gift of medicine, and we give great thanksgiving to God for the miracles He accomplished through our doctors. After spending two weeks in the ICU and going through two more surgeries, she is now healthy and thriving once again.
The unfortunate piece of this, however, is that Hope’s self-harming behaviors were the cause of the infection. She constantly jabs and picks at her catheter. It was never an issue before, I think, because it was an old surgery (from when she was a baby) and it was fully healed before her stimulating behaviors started. But when she received a new shunt and catheter back in April, the tissue didn’t have time to completely heal. We did keep her away from it for several weeks afterward, but that wasn’t enough time.
Now we are in the difficult position of preventing her from touching her catheter until it is fully healed – her neurosurgeon said six months. The area we need to protect runs from her neck all the way down to her stomach, it’s a very large space. There is absolutely no behavioral redirection that prevents her from picking; it is a compulsive stim and she just can’t help it. This means that when we aren’t able to be one-on-one with her and watching very closely, we have to keep her safe some other way.
We are working so hard to find a solution that doesn’t include pediatric restraints. It took us a month before any of her doctors or therapists would even have a serious brainstorming discussion with us. We tried some solutions with our own creativity, but nothing has panned out yet. Hopefully soon.
In other news… Jacob and Evangeline are starting 1st grade! We have lots of great books to get us going and I’m super excited for both of them. Technically Evangeline would be in Kindergarten this year, but since we are homeschooling it gives us a lot of flexibility to go at their pace, so I opted for an early 1st grade start and if we need to take more than a year to finish it no one will be stressed out! Having them start in the same grade will also be super helpful for me, as I only have one lesson plan. Yay!
I’m telling Stephen that he gets to “start Preschool” with them, which really just means I’ll have schoolish things for him to do when he feels like it. Hope is definitely in school with us, but she isn’t really classified in any grade level yet. I’m hoping that by the time Stephen is ready to start 1st grade her attentiveness will have grown enough that she can listen to the books and music and enjoy them along with him.
The children have reached lots of milestones since I last updated. Jacob is now using crutches around the house instead of a walker! He still uses his walker to go to church and back, but he is getting really strong and we are so proud of how hard he’s working on his walking. He even walked up the stairs for the first time ever a few days ago! Tomorrow is Jacob and Hope’s first baptism birthday and we will have a dinner and cake to celebrate with them.
Hope is now able to sit up on the edge of her bed and help me put her shirt on. This is a huge accomplishment! She does it without prompting and seems to enjoy participating in her care. She is getting more interested in being a part of our family every day. It’s amazing to watch her come to life. I’m working on teaching her to tell me when she wants to be picked up and also showing her how to go from a laying to a sitting position. She’s strong enough to do it, she just needs to learn that she can! We started putting her in her stander for a while but we’re breaking from that. Her braces aren’t exactly correct and she has some alignment issues, so we’re going to try and sort all that out before doing any more standing.
Evangeline has her very first loose tooth, which she is impatient to get out. She also started her first dance class last week. She is in a ballet and tap class and is really enjoying it so far! It has some of the same elements as gymnastics, without the flipping on bars way off the ground, which she didn’t care for much.
Stephen, on the other hand, loves gymnastics! His first class was also last week, and even though he was shy at first, once he got in on the fun he never stopped smiling once and he zoomed through all the skills. I was impressed! He is getting more interested in reading now and would be happy reading several books all in a row if I had the time for it. He just had his third birthday and is turning into a sweet, sweet kid.
Kyrie is growing like a weed; she is already in 2T clothes and she has four teeth! Ack! How did that happen!? Last week she said her first word “Dada”! She won’t say it for us every time, I suppose it’s on her terms. We are diaper free now except when we go out in town. I still take her potty when we’re away, but we use a diaper just in case we can’t find a potty fast enough. She stays dry through the night for us, which is awesome, and she typically has a few accidents throughout the day, but we’re doing really well for six months and I’m enjoying not having to buy so many diapers!