When we were in Manila last December, Dr. Crisostomo, the endocrinologist, suggested that we also see a geneticist. She named Dr. Eva Cutiongco-De la Paz as one of the best in town. Unfortunately we were caught by the holiday frenzy and Dr. Cutiongco ended her clinics for the year and will resume in January. Mier and I decided that Cerise and I will just once again go to Manila in January for the check up with Dr. Cutiongco. At the same time, we can have a follow up check up with Dr. Crisostomo.
I made arrangements to make an appointment with Dr. Cutiongco while still in Cagayan de Oro to make sure that we will be able to see her while we were in Manila. At the same time, I planned to have Cerise's urine metabolic screening, chromosomal analysis, hearing test and thyroid blood test all done also in Asian Hospital then visit Dr. Crisostomo again with results.
The visit with Dr. Cutiongco went very well. She was very nice and warm. Days before our appointment, I wrote a summary of what Cerise went through and emailed it to our pedia in Manila, Dr. Eileen Alikpala-Cuajunco, who in turn sent it to Dr. Cutiongco. By this. Dr. Cutiongco would have a background of Cerise's issues before we saw her.
After physically checking Cerise and inquiring about familial background, Dr. Cutiongco suspected Velo Cardio Facial Syndrome. Manifestations of this syndrome are congenital heart disease, failure to thrive and nasal regurgitation. But this syndrome is also characterized by a cleft palate which Cerise doesn't have. The doctor wanted a pedia ENT to check for velo pharyngeal insufficiency. The pedia ENT she referred to didn't have clinic the next day and for the rest of the week. My problem was looking for an ENT before we leave for Cagayan de Oro. Dr. Cutiongco said that if the ENT confirms velo pharyngeal insufficiency then she will require the chromosomal analysis.
On our way home that evening several things were bothering me:
1. finding a pedia ENT who can check Cerise the next day
2. getting her cleared for velo pharyngeal insufficiency.
3. her thyroid blood test and getting the results in time for the endocrinologist's clinic hours
4. her hearing test
5. collecting 30ml urine for her urine metabolic screening
I was considering staying a few more days just to finish it all. I was so tired and most of all, I miss Mier and the girls in Cagayan de Oro. I didn't want to have to go back to Manila without them again. I prayed that everything will just go on smoothly.
The next day, we were up early for the thyroid blood test. We were at the nuclear section by 8am as soon as it opened. They told us that results would be out by 6pm that day. We told them we were willing to pay extra to expedite the results because Dr. Crisostomo's clinic was from 11am to 1pm in a different hospital. They told us that we can go on ahead to the other hospital and they will just call the doctor for the results. We agreed.
Then the blessings started to unfold:
#1 Cerise fell asleep right away for her hearing test and we didn't have problems at all when we were doing it. The best news is that her hearing is normal!
#2 We found an ENT right away. He wasn't a pedia but he handles babies and children and was familiar with what Dr. Cutiongco was looking for. Also, we were first in line in his clinic.
#3 Cerise was cleared for velo pharyngeal insufficiency! No need for the chromosomal analysis!
#4 Before leaving for the doctor's clinic at the other hospital, we checked the lab for results of the thyroid test. Lo and behold, it would be ready in 15 minutes! We would be able to take it with us.
#5 Cerise's thyroid test is normal already! Praise God!
#6 We were able to collect 30ml of urine from Cerise in less than an hour for her urine metabolic screening. We were able to submit it right away to the hospital.
#7 Cerise was drinking approximately 20 ounces of milk already and was gaining weight. As of her last check up, she is now 4 kilos, 300 grams heavier from 10 days ago. :-)
Everything was just falling into place and results were starting to normalize. Dr. Cutiongco said that if Cerise continued to fail to thrive then she will have to require the chromosomal analysis. (I told her that although I like her a lot, I pray that I do not have to see her because of Cerise.)
So far, everything seems to be okay already. We are still waiting for results of her urine metabolic screening and a thyroid blood test again a month from now. I am hoping and praying that these would be normal.
Cerise is still small for her age (She is now four months old but weighs like a one month old) but as long as she is gaining weight well then she will be able to catch up soon.
I will never forget that christmas with her in purple. Thinking about it lang tumatayo balahibo ko. Am glad she is fine now.
ReplyDeleteSame here! I am relieved that things have improved with her. :-)
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