I always try to look at the positive aspects of every situation, especially with Logan. Finding the good in things, even if it is just the tiniest speck, often helps get me through this hand we were dealt. And, it makes me a better mom and advocate for all of my kids. Well, it took me a bit to find the good in our current situation…
This past Wednesday, October 18th, started off like any other day. I got all three kids ready for the day, with smiles on everyone’s faces (ok, this doesn’t happen EVERY day, but). We dropped Jack off at school and headed to Logan’s speech therapy. As always, she did great. We learned how to have her tell her own story using her new Tobii device (I have yet to post about this awesome communication device, but I will), and Wes sat quietly playing on my phone. After that we headed back to school to drop Logan off. She was happy, but seemed a little frustrated. I figured it was because she had been sitting for over an hour, and she knew she would be sitting again. So, I walked around the classroom with her for a minute to stretch her legs, then her OT took over. Wes and I headed out for an afternoon of errands.
I got a text from Logan’s teacher saying that she was fighting off sleep, and was hanging out in the bean bag. This did not surprise me, given the fact the she was up at 5am. When I went to pick her up she was cuddled up with one of the TA’s on the couch…a very sweet picture in my mind. It looked like she had been crying, which I thought was due to her being tired. Again, nothing out of the ordinary.
We have hippotherapy on Wednesdays, so we headed out for our 30 minute drive to get there. She was getting very upset off and on, again, me thinking she was tired. My check engine light came on and I took that as a sign to turn around and just go home. At this point everyone was crying. Wes had been so excited to go. Fun drive.
She took a long nap, but was still not herself, and was in visible pain. I started ruling out the usual suspects. She kept holding her head, so maybe it was a headache? Toothache? Vision issues? David and I were supposed to go out to celebrate our 9th anniversary, but she was in such rare form that we decided to stay home. It hurts when any of your children are sick or hurt, but it hurts even more when you don’t know what is going on, especially when they can’t tell you. There have been many times where I have prayed to feel what Logan feels when she is upset, so I would know how to help her. It’s awful.
That night David noticed that she wasn’t using her right arm much. I hadn’t noticed it until he said something. At that point I thought maybe she had a UTI, since she would scream in pain when I changed her diaper. We let her sleep, hoping things would be better in the morning.
I took her in to our pediatrician at 7:30am and asked for a urine test. Usually our doctor trusts what I need, so we were in and out. The labs came out fine. When we got home I started really noticing her arm. She was not using it at all! I checked it out, looking for bruises or swelling and found nothing. She would wince when I touched her elbow, and when I moved her wrist back and forth she had this look of absolute terror. It was so bad that she couldn’t get a cry out. This was our problem. My mommy senses were way off, and David’s senses took over. I’m SO thankful for David, for so many reasons.
We took her in for x-rays and came out with a cast for a Buckle Fracture. The doctor said it was not uncommon for this to happen in kids, since their bones are still growing. She explained it as taking a soda can and crushing it down. Nothing is actually broken, but it is damaged. We are so thankful it wasn’t a break. She only has to wear the cast for 3 weeks, and can still do her daily routines in it (besides getting it wet, of course).
Logan was a champ! She sat still for all of the x-rays and got a kick out of the loud noises the machine made. She even sat super still while they put the cast on. I was so proud of her, yet felt so defeated.
How did this happen?! When and where?! Why didn’t I notice?! I have been going over the past 48 hours in my mind trying to figure it all out. We were told that this likely happened because of a fall…the type where you put your hands out in front to catch yourself. I asked her teacher if she fell at school, and she didn’t. I couldn’t think of any time that she fell at home. She is a sensory seeker, and often bangs her hands on the table, sometimes very hard. She was doing this at speech therapy that morning, but there was no cry of terror. I’m sure she did this at school too. Could this be how it happened? I am almost positive that it happened at school, but there is no way for anyone to prove it. I trust that her teachers would tell me (they tell me about every bump or pinch!). Perhaps this is where my silver lining is. Maybe this could be our solid argument for a one on one aide for her.
There are so many things that I despise about Pitt Hopkins Syndrome, but her not being able to communicate with us (yet!) is excruciating. I’m always guessing her needs and wants, and I think I do a pretty good job of that. This circumstance is killing me. Imagine your kid falling and hurting themselves. They would come running to you, crying, and can tell you what happened and what hurts. You immediately are able to do something about it. I do it all the time with Jack and Wes. My heart hurts for Logan. I can only imagine how scared she was, and how much it hurt. It must have been especially scary if she was at school when it happened, and I was not there for her. Had she been able to tell me, I could have helped her much faster. Your child not having a voice is pure hell. I know one day she will communicate with us. We are working hard on it, and it will take a while, like everything with this syndrome.
Today, I especially hate PTHS. I hate that Logan has to live with this, and I hate that I don’t always know how to help her. She is so sweet, so kind, and so brave and tough.
Today, I am praying extra hard for a cure.