The 11th Month

Current Stats:

Isabella measures 24 inches long and currently weighs 12 lbs. Our little guppy is getting closer and closer to becoming a beluga. Using the typical growth chart, Isabella is creating her own curve at the bottom. But when her weight and height were plotted on the WHS growth chart, she shows as an average WHS baby.

Feeding

The GI doctor and nutritionist still have concerns regarding her weight. They instructed us to gradually up her nightly pump feedings from 35ml to 40ml per hour. Throw ups are not completely resolved but less in frequency and volume. She throws up about 30 mls of feeds 1-2 times a day. Since she appears to be volume sensitive, we were also instructed to change her daily calorie intake per feed from 24kcals to 28kcals.

Seizure Scare

We had the biggest scare of our life 2 days before her 11 month bday. She had her first big seizure. It all started with a staring/freezing episode then a small throw up, then staring and some jerking and some eye rolling. We know she has seizures but since the neurologist said that they were benign we were just waiting-out the seizure episode. However, 30 minutes later of staying frozen with occasional jerking and her eyes just rolled up and being unresponsive, we figured it was time to contact 911. While waiting for the paramedics to arrive she started to do tonic clonic movements and some stiffness. She also turned purple. She was rushed to the emergency room, intubated, and was given three separate doses of Ativan, but it was not enough to make the seizures stop. Eventually they got a hold of our neuro and the ER team was instructed to administer Diastat. Then eventually the seizing stopped. Her whole seizure episode lasted for about an hour and a half. The Stanford team came to get her and she stayed in the PICU overnight. She spiked a fever after the seizure and doctors needed to know if the reason she had a seizure was because she has an infection which also explains the fever. So they ordered a blood and urine culture but the results were a negative. So doctors said the fever was caused by the seizure and the cause of the seizure is unknown. Neurologist thinks it was just the time for her to have the epileptic seizures that is not uncommon to children with WHS. The doctor ordered daily doses of Keppra to control seizures. We have yet to see how the medicine affects her, but so far, Isabella seems to be back to her usual self, except that she seems to have lost the muscle strength to sit with minimal support from an adult. What is really important for us right now is to have the meds control the seizures and for us to NOT have to go through this big seizure scare ever again.

Renal Report

Kidney doctor says that her kidneys are close to normal functioning. We can try to give her a little bit of food rich in potassium such as potatoes, squash, avocados, and bananas. Another VCUG to check if her kidney reflux has resolved itself will be done around May of next year. Creatinine and potassium levels in her blood read normal.

Skills Update

She can turn with ease from side to side when put on her back and can bring herself to roll easily from her back to her belly. She can push her arms to hold her chest and head up when on her belly. She likes being on her belly and will happily kick her legs which causes her to pivot on the mat/blanket. We think she sometimes does it on purpose so her body will turn to face where she wants to go, such as to face wherever we are sitting in the room so she can see us. She also pulls her knees in so her butt is sticking up. Could it be that she is at the throes of discovering crawling?

She puts her thumb in her mouth and would lick the back of her hand or the inside of her arm to soothe herself. Every now and then she would scratch her head to make herself fall asleep.

She likes to be where everyone is. She cries when she is left in the crib and she cannot see anyone. She smiles when we put her on the highchair and we roll her to the dining room so she can be there while we eat. Every now and then she will make a sound as if she is calling us to look at her and when we do she flashes us a big gummy smile. She still makes “Mmmmm” sounds, but occasionally we hear her do an “Aaahhh”.


She cries to be held and when we hold her she does not want to be held facing mommy’s body. She would keep moving and turning because she prefers to face front so she can see everything and everyone. She enjoys watching people. She still does not play with toys nor does she show interest in them just yet…. She is more interested in people.


We’ve seen her do a social giggle, but she still does not do it consistently. Social smiling is definitely established.

Upcoming Medical Stuff

Isabella is scheduled to have her cleft palate repair surgery next week. The CFteam seem very confident about doing the procedure to our daughter, who they claim to be their youngest patient yet. They are saying that since Isabella only has a cleft on the soft palate, it should be easy for them to get in there and close it and that the whole procedure would only take about 2 hours and she would only need an overnight stay at the hospital.

 

To read about Isabella's previous developmental update, click here