Isabella Eats

Isabella has oral aversion... and due to that feeding is difficult, and she won't really explore her mouth or let others do it that oral motor skills are compromised. She does not chew, she does not suck, and the aftermath of a dentist visit (with the prying open, exploration, brushing, etc.) is a gateway to a temporary shut down of oral feeding willingness.

Daily feedings are tasking and brushing her teeth is no-party. Up until...

We saw that Isabella was very interested in her brother's battery toothbrush... those ones with a spinning brush head, make a sound, and has a vibrating sensation when you hold and use it. The nightly bath time routine is that the kids brush their teeth and bathe at the same time, and every time she watches her brother closely as he uses his toothbrush, giggles at the tickling vibrating sound she hears, and got so curious that she would grab it and put it in her mouth, and since they can't share toothbrushes (who would even want to do that really?), we got her her own spinning brush, a pink one with flowers... and "Lo and behold!"... she would welcome it with her mouth open whenever we brush her teeth, making tooth brushing feel less of a chore! =D

So, my husband, had one of his brilliant ideas... why not feed her with a vibrating spoon? So he went online, then the heavens opened up, and found one!

 

A week later it arrived in the mail... several uses later, feedings started becoming easier and the choirs of angels started singing, because now Isabella, will actually grab the spoon and put it willingly in her mouth!

 

So here's to hoping that the choir keeps singing!

14th Month Update

The Stats:


Isabella now weighs 13 lbs and is 24 inches long. We are gradually letting go of the 0 to 3 month clothes and saying hello to the 3 to 6 month sized onesies.



Medical Updates:

We had a number of appointments this month. We met with the neuro doctor and Isabella also has another EEG. There were no significant changes in the EEG results and there were no significant progress to report from the neuro-developmental perspective. It was just a simple follow up appointment. We also had an audiology appointment and with the several testing the audiologist has done, it shows that Isabella has hearing loss on both ears, with her right ear being on the moderate to severe hearing loss range. I found it puzzling that she has normal hearing for both ears for the sedated ABR done in April. I spoke to my speech therapist friend and she says that there is a chance that the test they did was just not developmentally appropriate for her. So, with regards to her hearing, we’ll just keep her fingers crossed, pray a lot and hope that her hearing is going to be fine.



Skill Updates:

• Isabella is better at supporting herself sitting down. Although she still can’t really do it on her own, and she will still fall when her arms are propped to support her body, we feel that it won’t be long that she will get to master this sitting-supporting-herself skill. Her head control is so much better and her back much stronger. She still likes being on her tummy but she has also learned how to enjoy sitting on her high chair or bumbo seat. She can definitely roll with ease and we will find her all over the blanket on the floor. This is a skill that is definitely mastered.

• She has found her feet. She automatically reaches for them when we take her clothes or socks off when we change her diapers. We have yet to wait for that time that she will explore her toes with her mouth.

• She still does not play with toys, her fingers are enough to entertain her as she will put it on her mouth and she will lick and drool on them. People are also very interesting for her. She likes it when we have company and she just likes to watch them. She’s definitely a social baby.

• She has done several social giggles. When we sing, make silly sounds, play, or when we tickle her, she will giggle. Although she becomes a “snob” from time to time pretending that what we’re doing when we play with her is not fun nor interesting. She can be a “princess” sometimes.

• Her core abdominal muscles are getting stronger. We believe that as her abs get stronger, her sitting will get better. We have found on her actually trying to pull her self up from lying down on her back. We encourage her to keep doing these “sit-up” like movements to strengthen her abs.

• She’s developed “separation anxiety” which made everyone in the Catiis home very happy. Whenever she cries because she does not see us or when she cries if one of us leaves, makes us all happy.

• We’ve been playing this adapted version of the peek-a-boo game and she smiles at us, sometimes giggles, and occasionally shrieks.



Feeding

• She still gets hooked up from 8pm to 8am on the kangaroo pump. We have seen less throw-ups, which is a milestone in itself. Very rarely will she throw up full feeds. She takes in 41 mls/ hour at night while on the pump and during daytime feedings she takes in 100mls. It has happened that she can take in full daytime feeds orally. She is less aversive to her bottle and she has, at times, opened them to welcome the bottle it. She cannot suck. She seemed to have lost it. We thought she would be able to when she got her cleft repaired, but she has not gained that skill back. Perhaps in time she will. She will gnaw or chew on her pigeon nipple and milk comes out. She has better swallowing coordination, but occasionally she still coughs. We were hoping that her daytime feeds will all be given via mouth… the lady that used to baby sit her did a really great job feeding her only by mouth during the day and she will take in all her feed volumes. However, that lady had to leave and so we are now back to tube feeding during the day, because the new lady watching her cannot get her to really eat all of her feeds via bottle and Isabella needs to gain weight.

• She had a cold and we were scared that if she gets sick she might have a seizure. She also cannot eat well when she had a cold. We would feed her rice cereal but she still developed an aversion for the spoon. In time though we think that she will get better at it. So far the cold hasn’t crossed over to making her really sick and it looks like there are no scary seizures coming anytime soon.



Upcoming

• We have asked and consulted with our doctors and therapists about seeing a pediatric chiropractor. They recommended that we see an Osteopath instead. I had no idea how hard it was to actually find a pediatric doctor of Osteopathy who has worked with kids with developmental delay, syndromes and low tone, but we did find one. Isabella has an initial appointment set for March.

• We have an IFSP coming up soon. I cannot believe that it has been a year since she started receiving early start services.

• We have follow up appointments with the renal doctors, the GI clinic, and the Craniofacial team in March.

• We were having issues with baby care…. but, after all the looking around, and asking around, and researching, we found out that she qualifies for nurse care. So, a nurse will be caring for our little Isabella really soon. What a big blessing!

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

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

Isabella's 9th Month

Current Stats:

Weight: 10 lbs 11 oz. - We met the 10 lb minimum goal weight for the cleft palate surgery

Length: 23 inches - Almost 2 feet long YAY!

We have outgrown newborn sized clothes and are ready to fill in the 0 to 3 month set.


Vision

She can track and follow us around the room.

She seems to be more aware of her surroundings.

She still seems to have better far vision.

She sometimes follows the sound of mommy's voice

She will stare at her hands and feet. She will also move her fingers and stare at them for long periods of time. It looks like we won't be needing baby toys for awhile. Body parts seem to be enough to entertain her.


Language and Social Development

She makes happy sounds which are mostly Mmmmm, Mmmmms. She will make vowel sounds like Aaaaahhh when she is calling for us or when she is upset.

Her cyring is much louder now.

The doctor was asking about her development one time and was asking if she was making consonant sounds. I told him that Mmmm is a consonant sound, but I guess it was not really a qualifiable yes response to the question. I think he was looking more at sounds like Ba-ba-bas, Ta-ta-tas, Pa-pa-pas, and Ga-ga-goo-goos.

It seems like she now calls for us when she does not see her in the room with her. She makes loud Aaaahhh sounds to call for us that stops and turns into a smile the moment somebody checks on her.

She will let out an accidental giggle every now and then. She managed to let out a giggle when we tickle her. it seems like she was not sure how to handle the tickling and thus a giggle came out of her. Pretty soon her giggles will be more puproseful and social in nature.

She is a happy baby. She is very easy to take care of and not demanding. She will cry when she needs her diaper changed or when she wants to be held. The moment her needs are met she will stop cyring. Every now and then she will cry when she is hungry.


Feeding

She eats semi solids alternately with her milk feeds during the day. She takes in about 40 mls of semi solids. She eats carrots, peas, apples and pears. The peas are her favorite.

She takes in 70 mls of milk during the day per feeding. She can orally take in 35 mls of milk using the pigeon nipple/bottle.

She still is fed via kangaroo pump through the night. She takes in 25 mls per hour throughout the night (10 to 7am.)


Sleep

She sleeps well throughout the night. She sleeps at around 9 to10pm and will wake up with a cry to get her diaper changed around 5 am. She will go back to sleep right after.

She takes 2 long naps during the day of about an hour each.

She sleeps better on her belly. We let her sleep on her belly during her day time naps.


Motor Development

She can turn with ease from side to side when we lay her on a flat surface.

She can turn from belly to her back.

She can also turn from her back to her belly, but sometimes still gets stuck on her side. She is getting better and better at moving her hand out of the way when she turns or being able to push harder with her leg to be able to make that turn.

She can definitely hold her head up. She likes being propped to sit on our leg or while leaning on pillows. She also likes sitting on her high chair inclined at about 100 degrees.

She can put her finger in her mouth or the back of her hand to her mouth.


Medical Stuff

Her PEG was changed into the less conspicuous Mickey button.

She has epsonic seizures. These are absence seizures. The EEG report says that she has about 1 to 3 seizures in a minute that last about 1 to 3 seconds each. Honestly my husband and I have not seen these "staring" seizures. We told the neuro that she sometimes does the blinking of her eyes with some jerking of the hands and feet that last only for a couple of seconds and has no known triggers nor patterns and are very spaced apart in occurence. Doctor says that these are also characteristic of the epsonic seizures. He added that Isabella's seizures are benign and she will not be needing medication at this time. He advised us to watch out for epileptic seizures and should we witness one we need to meet and talk about medication.


Others

She does not do the moving of her head from side to side when she is soothing herself to sleep. The hair at the back of her head now has a chance to grow back in.
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This month was filled with a lot of positive progress. We are looking forward to how Isabella will surprise us in the succeeding months.

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

  

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

Feeding Frenzy and Frustrations

Ever since we brought Isabella home we were very focused on her feeding. We made sure that she is fed every three hours. We made sure that her gaining weight was our number one priority.

We made sure that her milk is fortified and she is given enough volume per feeding. Little by little we would up her volume intake and because of this she was gaining an ounce a day.

However, just recently feeding her seems like a challenge. She seems to be experiencing acid reflux and would throw up full feedings. It was beginning to feel frustrating because feeding became a messy experience and this affected the rate of her weight gain.

We tried giving her half her volume feeds at a time and feeding her the other half an hour later to make sure that the milk has already settled down... but she would still throw up.

We tried giving her less milk bringing her volume feed down by 10mls. Still throwing up.

We would feed her in an inclined position and we would keep her up after feeds but she would still throw up. We were scared that this could lead to her "failure to thrive".

Eventually we read that we can help baby keep her food down by putting her on her tummy and inclined at about a 30 degree angle. We tried it.... and so far it seems to be working.