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.
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.
• 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.
• 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.
• 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!