Josephine zoomed up to a whopping 14 lbs., 14 oz on Thursday, October 15. A nice gain of 8 ounces from 1 month ago.
Oh…and 5 teeth now…1 on top and 4 on the bottom!
Weight Check at 13.5 Months
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Category Archives: Medical
Day 4
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!!!!
Hospital: Day 3
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…
Wonderful friends!
Thanks to Kate and her family for taking care of our karate master, Sheldon.
I feel so blessed to have such amazing family and friends in our lives! You are appreciated more than you will know!
What was that about?
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!
First full day at the hospital
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!
Josephine’s 1st ER visit
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…
Nutrition and Weight Gain
On a recent trip to see the gastroenterologist, Dr. Francis Sunaryo, the doctor suggested seeing a nutritionist to boost caloric intake to improve Josephine’s weight gain. She was 13 lbs., 13 oz. The blood work came back clear and healthy, so no worries about Celiac Disease, thyroid disorders or pancreatic concerns. Which leads us to the nutritionist…
“Mitch” Bentler was pleased with the amount of food Josephine is eating. But steps need to be taken to increase her weight. Two weeks after the visit with the gastroenterologist, Josephine weighed 13 lbs., 12 oz., a 1 ounce loss. Some suggestions were to concentrate the formula and add olive oil (1 teaspoon) to every meal. Another possible concern is that because I make most of her food, Josephine gets very little fat in her diet. I always thought making baby food was the best way to go. And that would be true if Josephine had no disorder. So, it seems Gerber will get new customers soon!
“Mitch” asked to see Josephine again in 6 weeks and I look forward to seeing a nice weight gain!
MRI and Ambulatory EEG Results
After a great amount of waiting patiently and many phone calls to the neurologist, we have some new information regarding Josephine’s brain.
MRI RESULTS: As we suspected, Josephine has complete agenesis of the corpus callosum. What does this mean? No idea. It depends who you ask and what research you do on what site. What we do know is the connective tissue/fibers between the left and right brain is nonexistent. Normally developed within the first 6-12 weeks of conception, the corpus callosum allows the right and left brain to communicate through as many as 200 million fibers. There is another pathway this communication can occur, but there are only 50,000 fibers available in that connection. Check out www.nodcc.org for more detailed information on disorders of the corpus callosum. Again, what does this mean for Josephine? She may need more therapy to help build new ways for the left and right brain to communicate. The good news is that we have started Early Intervention already, so only improvements can be made.
AMBULATORY EEG RESULTS: These results are less severe than the MRI, but still concerning. Josephine has a tendency toward seizures, but did not experience a full blown seizure while hooked up to the EEG. The neurologist, Dr. Aviva Bojko, is not prescribing any medication at this time because the EEG just showed spikes in the activity in the right and left frontal portions of the brain. If we see any signs of seizures such as blank staring and twitching of any kind, we are asked to call the Dr. Bojko immediately. Are these seizures connected to the agenesis? Your answers are as good as ours. I read that seizures are increased with complete agenesis and when having conversations with other medical professionals (a P.A. and a nutritionist), if there is no corpus callosum, seizure activity should cease. More conflicting information…no surprise here.
Josephine and the Ambulatory EEG
On the medical side of Tetrasomy 8p (Genetic Disorder)
Josephine took a trip to the neurologist on July 26. The neurologist wanted to monitor her brain activity for a 48 hour period. The process of attaching the 26 electrodes was less than wonderful, both for Josephine and Mom and Dad.
But after the procedure, Josephine became our little cosmonaut (see pictures above)!
No results yet from that test. Next up is the brain MRI, which is scheduled for August 6. This is another big test to give us some big answers – does Josephine have a corpus callosum (arched bridge of nervous tissue that connects the two cerebral hemispheres, allowing communication between the right and left sides of the brain) and does she have hydrocephalus (water on the brain)?
Josephine has been experiencing, what I think to be petit mal seizures – vacant stares for a few seconds and head twitching in repetition of 2-4 movements.
This MRI will give us a better idea of her prognosis. Every test leads to a new piece of the puzzle. We may not always get the answers we want to hear, but it’s better to deal with what’s coming head on. Denial is not our friend at this point.