On our way to Ohio, we stopped at McDonalds (August 2010)
We are en route to Ohio–stopped at McDonalds and thought I’d write about Josephine’s latest love…hair pulling (only on the right side). It didn’t seem like an issue until the last week and a half when the hair on the left side of her head was noticeably thicker. I would offer her my hair, but (being mostly bald) she isn’t able to get a grip:)
She seems to do this mostly when she’s frustrated–and probably not able to truly communicate her emotions. So, whenever she does it, we try to acknowledge that she’s frustrated. Not sure if this is just a phase or if it will (hopefully not) develop into a lasting habit.
Good therapy session today! Josephine was rolling over (to the right, to the right), from her stomach to her back, then to her stomach again. She did this three or four times with much more ease (and without much effort) than she has done in the past.
Repetition, repetition, repetition. Getting her on all fours is not her most popular thing to do yet…but just wait!
Another thing I started to wonder about…She sometimes gets very excited and flails her hands and arms. It was when my son Sheldon was hanging on my back and wrestling with me that I looked up and she was doing this movement. When he got off, she stopped. Then he jumped on me again–and again she started to get excited. Then it hit me…maybe she is signing the word “play”–and she wants in on the fun. I will keep monitoring this.
Okay, it’s getting close to midnight…there’s finally silence. Nope, spoke to soon…as soon as I wrote that sentence, I jinxed myself. The crying continues. I wish I understood what she needs. As Krysta wrote in her earlier post, is it the normal toddler-fighting-sleep-scream or something else. Is she on some type of sensory overload?
Not really adding anything new…just my two cents. Just wish I could understand her more to help her.
The saga continues…
Josephine hit a huge milestone today – while doing therapy, she started to fall over and used her protective reflex to keep her balance! This is so awesome! Therapy seems to be doin’ it’s job and our princess is continuing to grow stronger.
Today was a GREAT day!
WE ARE GOING HOME!!!!
The good news is that Josephine has not had any seizures during our visit. However, Dr. Bojko said she is having significant spiking in her brain activity, particularly while sleeping. The average brain should have no spike in brain activity. This means Josephine is prone to seizures and is something we need to monitor on a regular basis. No medication is needed at this time, which is great because she is continuing to make progress in therapy and the meds could slow her down again.
We will have to do an ambulatory EEG again in 3 months, just to make sure the spiking hasn’t gotten any worse.
See ya at home!!!!
Our morning was wonderful today because we got to see Little Sheldon! He came to visit his sister and boy was she happy to see him! I realized at that moment just how much I missed not seeing him. What a strong boy he is. I know he has been concerned about Josephine and was happy to see her too.
And thanks to our wonderful friend, Trish for all her help. She hosted a playdate and gave us all some much needed time to unwind.
Dr. Morse, who is Dr. Bojko’s partner, said there are regular spikes in her brain activity and they needed to monitor Josephine for one more day, at least.
Not really sure what that means and we are looking forward to hearing more about what happens next.
Are we going to need to stay longer? What else has to be done? Will she have to be on medication? If so, why and for how long? What if she is not on medication? What happens?
So much do deal with for such a little girl…
Well, that was weird…
After Josephine finished her dinner and was relaxing with some playtime, she spit up a small amount of dinner. No big deal. Then she followed up with throwing up about 2 tablespoons of her dinner. So, I called the nurse to alert them of the unusual behavior. While the nurse was in the room, Josephine threw up another 2 tablespoons of food. After the nurse left to room to get someone to change her sheets, Josephine rolled her eyes up in her head for about 1/2 a second. Then she was fine. We decided to mark that as possible seizure activity and hope to find out more information once the EEG is read in the morning.
Good night all!
What a day today! Josephine had a few tests done to check her organs and bone structure.
Great news – her heart is fabulous and beautiful! So the Tetrasomy 8p has not affected that at all! Such a relief. The pelvic and abdominal ultrasound were also positive and showed nothing unusual, other than her left kidney is located in her pelvic region instead of in her back. But it is functioning properly and is a normal size for her age.
We are still waiting on the skeletal scan results, but the doctors tell us that no news is good news, which is also a relief.
Since we had to cancel Josephine’s 1st birthday party, we decided to bring the cake to the hospital for the doctors and nurses to enjoy. And boy did they enjoy, as did we! Even the birthday girl had a few bites.
With all of the excitement, Josephine was pretty worn out and took a relaxing nap, giving me a time to relax as well.
Although we were in the hospital, I know our Birthday Princess had a great day and fun celebrating! Life is a gift and we are thrilled to have Josephine in our lives! We love you!
Well, Friday started out as any old day and then dinner came along. We all sat down for a relaxing meal and noticed Josephine started moving her head left to right in a repetitive motion. My mom noticed Josephine had been looking at the dining room light just before the movements. We waited and observed for about 15 minutes and saw the same thing occur again. And again. After brief discussion, we decided to call the neurologist, Dr. Bojko, to alert her of the situation.
The on-call doc told us to take Josephine to the ER, which we did without too much panic. We didn’t want Little Sheldon to worry.
The ER staff was amazing! They whisked us in quickly and we were seen by the attending pediatrician within 20 minutes. After consultation with Dr. Bojko, Josephine was admitted for another EEG test. The difference is this time the doctors will monitor her with a video camera so the movements can be captured on camera as well on electronically on the EEG machine. Updates to follow…