So far so good...

As mentioned in the previous post, two of Logan's blood test results came back, and I talked to the pulmonologist the following day on the phone. She reassured me that the red blood cell count was fine and he's not anemic. However, from the other test, it showed that Logan's oxygen level was too low, and the carbon dioxide level was too high. He's breathing too shallowly. The pulmonologist recommended to do another sleep test with him hooked up to the bipap machine. She said she's treated kids who are 6 months to a year old, who uses this machine at night when they sleep, and during the day, they function normally. I assume this is like the cpap machine that people with sleep apnea use at night (my brother has one of those). Unfortunately, the test has to be administered by a lead technician at the sleep center, and he's not available until March 17. For now, we'll just have to continue what we're doing. On a positive note, Logan's acid reflux seems to have gotten better. He doesn't gag or choke as much during his sleep, and is less agitated during feeding. I have also emailed his pediatrician to request the fading of one of his medicine, Reglan. I've read too many negative comments on this drug and all the negative side effects. This drug is pretty controversial. Since Logan has been taking it for 2 months, and he's getting better, I really want him to be off of it, just in case. The pediatrician is fine with the decision, and we're slowly weaning him off. Since he's been gaining weight steadily, he's probably outgrown that dosage anyway.

Aidan on the other hand has been very clingly at daycare and been acting like a baby. I guess that's the regression that I read about when a new sibling arrives. On a whole, he's been going. I am always amazed at his good memory and how much he actually understands these days. He's speaking a lot more, even though strangers might not always understand what he means yet. He made up this song about circle, squares and triangles. It was so cute and funny. Hank and I both set that as our cell phone ringtones. :)

Aidan also tried out his first big boy gym class yesterday. He has graduated from his parent/toddler class and now he's doing in all by himself. We had to switch his first class from a Saturday to a Friday because we got a birthday party to attend to today (Happy Birthday Baby Miles!). The class was really small, only 4 kids and Aidan was the youngest one. It seems like the others were 4 years old and he's only just turned 3. In the beginning, he would run over to me and explained to me what he did. Later on, he stopped doing it and actually listened to the teacher. He couldn't do many of the things that the teacher taught, but he's learning how to follow instructions. There were times he still ran all over the place and the teacher had to call him back to the group (this happened in his toddler class as well and they encouraged exploration of the gym in the class). However, every time the teacher called him back, he would come back and wouldn't put up a fight. The teacher joked that he was better than some 12-year olds! I am glad he started his new class with a smaller group of kids. It was a better transition and he got a little more attention. He did so much better than I expected and I am so proud of him! He's not a baby anymore, he's really a boy!

The good and maybe the bad?

Let's start with some sorta good Logan updates. As mentioned in my previous post, Logan had to go to SF to get his blood drawn for the DNA test and other blood work. Last time it was unsuccessful, but this time it was smooth and easy! We went up to SF today (or yesterday since it's early in the morning now), and waited for a while to be called. Now I remember why I don't like the lab in SF, it's just too busy.

Same as the other time, Logan fussed and cried before the needles was in his arm. It must be really uncomfortable to him to have that long rubber band tied to his tiny arm. The lab assistant was able to find a good find on the first try and didn't have to waste 30 mins just to locate one. She found it and poked it right it. Voila! Blood came out without any problem. All this time I kept on telling Logan what a good boy he is, and it's all gonna be done real soon. He didn't cry at all. Everything went smoothly and we thanked the lab assistants several times for such a good blood drawn. After we came out, my mom told me that the lab assistant was very nervous herself. My mom saw that after the first tube of blood drawn, the lab assistant's hand started shaking with the second tube, and shook even more with the third. Probably the adrenaline wore off after the initial poke and then she realized how nervous she was, trying to poke a 2-month old. We're just glad it's all over and we only had to stay at Kaiser for an hour (and maybe less).

For the bad part: two of the blood tests results came back really soon. I was able to go online and checked them and realized Logan has a low red blood cell count. Another blood test showed other weird stuff about oxygen and carbon dioxide and Ph which I don't understand. Most of his numbers were NOT within the normal standard range. I was unable to interpret those results. Right now, I'll just have to wait for the pulmonologist to call me to discuss them,or wait till we see her on the 4th. I hope whatever Logan is having is treatable.

To end on a happier note, Aidan had his last day of gym class last Sunday and it was show week. He had a lot of fun at The Little Gym, and we signed up him for another semester in the 3-4 yr old class. I am not sure if he's mature enough to take this class yet as it does not require parent participation and I am not sure how he will be listening instructions to get on the different apparatus. It took him a whole semester to feel slightly comfortable to be on the balance beam and to explore other equipment. However, he LOVES group circle time and is able to follow nearly all of the instructions. New class starts this Saturday and we'll see if this little boy has really grown up. Enjoy the pictures!

Updates on Logan's January Appointments

After a whole bunch of doctor's appointments and tests, here are the updates:

Sleep Apnea Test Result (1.20.09)-
Talked to the doctor on the phone so we don't have to go all the way back to San Jose. According to the doctor, there are 3 types of Sleep Apnea: Obstructive (something blocking the airway), Central (the brain tells him not to breathe) and Hyperventilation (normal breathing but too shallow and too little oxygen).
The test was administered with extra O2 on at all times. The pulmonologist actually wanted the O2 to stop to get a baseline but it didn't happen. It seems like we don't have to worry about Obstructive apnea as Logan did fine in that area. His O2 saturation didn't fall that much. He has some mild to moderate Central apnea when his O2 dropped down to the high 80s and low 90s (it should stay above 95). The serious problem is in the third category. During his REM sleep, his O2 dropped down to the 60s-70s and at one point down to 58. These episodes lasted between 1-3 minutes, which were considered pretty long. This might be due to a combination of the Central Apnea and his Hypotonia (weak muscle tone). The doctor recommended increasing his current O2 supply to 1 liter instead of 0.5.

We're definitely NOT happy with the sleep apnea test results. We're hoping the test would show that Logan would be fine and we could get rid of his cannula. Unfortunately, it showed that he needed more O2.

Neurology Appointment (1.21.09) -
Neurologist commented that Logan appeared 500% better and stronger than she last saw him at the hospital. His muscle tone has gotten stronger and his cries were definitely a lot louder, compared to his unusual silent cries before. I asked about his previous special blood tests done at the hospital as some of them took a while to get the results back. And as usual, everything came back normal. I also asked about his Central sleep apnea and what we could do. There isn't much we could do at the moment. We talked about seizures which might be the cause of it. However, Logan has his MRI done and also different scans, and all came back normal. I also didn't notice any seizure-like movements from him either. The neurologist basically laid out 3 choices: 1) wait it out to see if he gets stronger and better and grows out of it, 2) do another blood test to weed out some more possible diseases/illnesses as we still don't know what causes all this, and this blood test I think is to test his Mitochrondria (or something like that), 3) do a more invasive muscle biopsy to see his muscle tone and cells. I have opted for him to wait it out and not do anything for the time being. Knowing his blood test history, I have a feeling the tests will come back normal again. We will evaluate his progress in a month and then decide on further action.

Pulmonolgy Phone Call (1.21.09)-
After receiving the sleep apnea test results, the pulmonologist called me to discuss the findings. We have decided to up his O2 level at home to 0.75 instead of 1 liter recommended by the sleep test doctor because we're worried that with such a strong push, Logan's lungs might get lazy and won't be working as hard. When he's awake, we'll keep it at 0.5, and when he's sleeping, we'll keep it at 0.75. The pulmonologist also wanted Logan to get a blood test done to test for a gene that can detect if he actually has Hyperventilation or Central Hyperventilation Syndrome. The blood would have to be Fedex or UPS over to a lab in Chicago for the results. This needs to be done soon. She also wanted Logan to get his heart checked as the lungs work closely with the heart. This would be an easy test, just to put some probes on his chest for 15 mins or so (provided Logan doesn't scream and pull everything out). We'll have to see when the Cardiologist has time to do that and the Pulmonologist will make the referral.

Pediatrician appointment (1.22.09)-
Went for Logan's 2-month well baby check-up. We talked more about his acid reflux, which is actually more of a concern to me as Logan still looks very uncomfortable during and after feeding. The change of medication seems to have worked and I'll just keep the pediatrician updated when there's a need to up the dosage. I asked about tummy time. Logan hasn't been doing any tummy time. I asked the Pulmonologist this yesterday and I am asking the pediatrician again. I know he needs to do it to get his neck muscles stronger, thus improves his breathing. On the other hand, he just does a face plant on the boppy pillow or our chest, and I am worried he can't breathe and his cannula is poking his nose. The pediatrician said it's important for him to do tummy time, but definitely has to be supervised. Logan won't like it, but we gotta do it. I asked about an infant carrier. I know Logan would like a more sling-type or wrap type carrier but then his neck would flop down, thus closing his airway. The pediatrician agreed that a front carrier like the Baby Bjorn or Ergo is better for his breathing and acid reflux, but Logan might need some time to get used to that. We talked more about his medications (dosage and side effects), his acid reflux, sleep apnea test results, feeding and all of his specialists appointments. Overall, Logan has been doing well as he is gaining weight steadily. He finally reached the 11lb mark, weighing 11 lbs and 6 oz, 22.5 inches tall!! Logan also got his 3 shots of immunization that day. Poor baby but he only cried for a few seconds. That's my boy!

Blood Test Episode (1.22.09)-
So after the pediatrician appointment, we went to the lab to get the special blood test done so that it can be sent to Chicago asap. Came to find out they needed 3 tubes of blood, and because one of them is a special one, it's not done in Daly City and we had to go to the lab in SSF. No problem, it's only a 5-min drive so we packed up and left. When we got there, they double-checked the type of blood test because it's so rare and then proceeded to try to do it. Took a while to find the vein (couldn't be with a heel prick). Poked him once on the upper arm, no blood came out. Poked him again close to his wrist, only a little blood came out and then clotted. Their rule is to only do it twice and they're not allowed to do it again. Of course, they recommended us to go to SF to get it done, as they have more experience and staff to draw blood from infants. I was hoping we could avoid the trip to SF, but now we still have to go there, plus Logan has to be poked at least once more. On a positive note, Logan was a fighter and a champ. He cried and fussed when they were looking for a good vein, probably because of the discomfort of the rubber band on his arm. But when the needle was actually in there, he didn't cry at all. We originally planned to go to SF next Wed as it's Chinese New Year on Monday, and we don't want him to start the new year with a blood test. But after talking to the Pulmonologist (she called after she heard of the blood test fiasco), it's best to get it done ASAP. So we're heading up to SF on Monday to get it over with.

When I talked to each of the doctors listed above, I asked them all the same question. Why did Logan's O2 saturation go down so low, as low as in the 50s at one point, but when he was at the hospital for a month, he never went down that low (or at least I didn't know)? How come his condition seems to have worsen, yet he's growing bigger and stronger each day? None of the doctors could really give me an answer. It might be the machines, it might be because these things change all the time, nobody knows. We still don't know what causes all this fuss and we're trying very hard to find a diagnosis.

Logan's diagnosis for now are: Hyptonia, Laryngomalacia, and Tracheomalacia.

More appointments to come in the next few months: Audiology for hearing tests, ENT for feeding and possible cleft palate, Cardiology for the echocardiogram, and recurring appointments with all the specialists.

Trial week is over

Grandparents came back from their little trip to Calgary yesterday. This week is supposed to be a trial week to see how we can take care of Aidan and Logan without their assistance. It didn't go as smooth as we would like, because both Hank and I got sick at the same time (as always). I got the flu and it hit me pretty hard on Wednesday. I had to tell Hank to work from home because I couldn't function in the morning, with a killer headache, runny nose, sore throat and feeling hot and cold, since the night before. Luckily, after sleeping for 4 hours and resting a little more, I felt a lot better. Still having a runny nose and cough at the moment, but definitely a big improvement.

During these past few days, we were very careful with our hand-washing and mask-wearing because we cannot get Logan sick. His airway is already tiny and taking in enough oxygen is already a challenge. If he gets sick with a runny nose and a cough, this could really be life threatening. Thank god he didn't seem to have caught anything.

Logan's acid reflux was a little better since my previous entry. At least there hasn't been any projectile vomiting yet (knock on wood). The pediatrician changed one of his medications. He is taking Reglan + Prilosec instead of Reglan + Zantac. Prilosec is supposed to turn off the acid pumps to the stomach. Let's hope the medication works because we could really see him suffer from the acid reflux. Sometimes I wonder if Logan also has colic as well. Logan also seems to have settled in a schedule of his own. He tends to wake up in the middle of the night between 2-4 a.m., then sleep through the morning and early afternoon, and then wakeup from late afternoon to around 10-11 p.m. He is definitely a night owl. This is not the best schedule for us, but at least it's a little more predictable. In a way, he sleeps through the night (as in sleeping 5-6 hrs), it just that his night is actually our day. Because he's feeding on the demand right now, it's good in a way that we have more free time and don't have to be as rigid with the schedule. However, I also worry about his weight gain since he's eating less. We'll have to wait till his check-up next week to see if he's gaining weight steadily.

Aidan, on the other hand, seems to continue enjoying being a big brother. When I change Logan's diaper, he would help me get the diaper and wipes. He would open up the diaper for me, get two wipes out (one for me and one for him) and he would wipe Logan as well. He actually wraps the diaper and throws that into the Diaper Champ for me without me asking. Wow! When he hears Logan cries, he would try to pat him on his chest to calm him down. Yesterday, I was calming Logan and I asked if he could bring the carseat from the living room to the bedroom. He knew which one I was talking about and dragged that all the way to the room. I immediately praised him and called him a good big brother and a good helper. However, we've also seen another side of him where he is acting like a baby. At daycare, we're told that when the other younger kids were drinking from a bottle, he would open his mouth and want some. He wants to be held a little more, and is a little reluctant to let me leave after I drop him off at daycare.

So far things are going well. Three more weeks until grandparents have to leave. Hopefully, by then Logan would be stronger and healthier.

Logan doesn't seem to feel good or happy

Now that all the birthday celebrations are over, it's time to focus back on the serious matter.

After the sleep apnea test, Logan's voice was so coarse. Maybe it's because he was crying so much that night that he lost his voice a little. He has been feeding well and steadily gaining weight. However, his acid reflux seems to have worsened.

Compared to when he was at the hospital and first discharged from there, he was fussier, and crying more. It was hard to figure out whether if it was the acid reflux that was causing the problem or something else. When he's eating, he would cry and arch his back. We're already sitting him up, putting him in his carseat or rocking chair. However, sometimes he doesn't like anything that we do: rocking, singing, holding, talking or laying him down. He's been averaging one vomiting episode a week. But yesterday and today, he had projectile vomiting. I am not sure if it's because it's the Synagis shot that he had yesterday that caused it, or it's the acid reflux.

Logan is almost 2 months old, yet he didn't seem to be happy enough to play or respond to us. When he's alert enough, he would look around, but we haven't seen any smiles yet. I know all these developmental milestones happen differently to different babies, but it's hard to ignore how different Logan and Aidan are.

Furthermore, I'm not as optimistic as before regarding Logan's oxygen level. I was hoping he could get rid of the oxygen cannula by this month. We haven't received the sleep apnea test results yet, but I've seen Logan's lips turning a little bluish gray the other day when he was coughing, and I had to immediately lift him up and turn up his oxygen level a little. This is definitely not a good sign.

Having the cannula in his nose, and carrying the oxygen with us wherever we go might be troublesome and annoying. But right now, figuring out his acid reflux should be a priority as it really upsets him and upsets all of us who see him suffer in pain.

I've emailed both the pediatrician and pulmonologist for advice on his vomiting and acid reflux. Let's see what they will say. And tomorrow, Logan will see the neurologist and audiologist.

These doctors appointments are just never-ending.

The Birthday Celebration is finally over!

Aidan's birthday party at The Little Gym was so much fun for the kids. Aidan was so happy running around and laughing all day. He was listening to instructions, participating in all the dances and activities, and even showed off his skills to a little friend on how to step on those parallel bars (which he never does during gym class). The activity leaders were nice and friendly, and great with the kids. Even though we didn't have too many children at the party, I believe those that attended had a lot of fun, even the parents!

We got to the gym a little before 2:30 p.m. to bring in the food and set-up. The staff there were very helpful in assisting (but then of course, they got paid doing it). Guests started arriving and of course, they all wanted to meet Logan as well. The kids (and parents) played in the gym with the activity leaders doing circle time, group activities and exploring the different apparatus in the gym. All the kids enjoyed the singing and dancing, the balls and sticks, the huge parachute (Aidan loves it), and the games. Younger kids were a little overwhelmed with all the excitement. But those who are 2-4 yrs old loved everything!

While the kids were playing, adults got to enjoy the delicious soy sauce chicken wings, fried pork chops, stir fried vermicelli, fruit salad and drinks that Ah Po prepared for the last couple of days. Delicious food!! Let's not forget the birthday cake and the candles. Aidan always associates birthday and birthday cakes to blowing out candles. Mommy strategically placed his three star candles closer to him so that he could actually blow them off. He did it! The party only lasted until 4 p.m., and now looking back, I wish I have extended it for another half an hour, so that guests could hang out and mingle a little longer.

When Aidan was younger, his parties were more adult-oriented. Now that he's older and actually remembers and enjoys the celebration, the party is more about him. That's why we chose The Little Gym because he loves that place so much. It's just a little more inconvenient for our friends who came all the way from different parts of the Bay Area to this celebration that only lasted 1.5 hrs. Hopefully, next year, with Logan a little older, we could plan a better birthday celebration that's fun for the kids, and fun for the adults without kids.

As for Logan, he of course was very popular at the party. Friends all wanted to meet him, yet they were afraid to touch him. I felt bad because I know they wanted to hold him, but given the condition that he's in, I don't believe anyone held Logan but his grandparents. But that's ok, once his tube is off and we celebrate his Red Egg & Ginger party, he could be a lively participant.

We really wanted to thank all our friends who came to the party. Thanks for showering both Aidan and Logan with love and soooo many presents. Thanks for driving all the way from where you are, and you all are dispersed all over the Bay Area, too. We really appreciate you coming and we hope you had as much a great time as we did.

Aidan's little 3rd Birthday celebration

Jan 9 was Aidan's 3rd birthday! Can't believe this little baby is already 3. He doesn't look like an infant or toddler anymore, he sure does look like a big boy, a preschooler. We had a small celebration at home today, just us family. Tomorrow will be his big party.

We went to a bakery and got a pie like cake with egg custard inside. We didn't want another cake cake, as we'll be eating one the following day. The two viable options were a lemon meringne pie or this other pie. We let Aidan select which one he wanted. Mommy saved the little toys from his first birthday cake, and put those Winnie The Pooh toys on the pie. Gotta at least make it look like a birthday cake for him!

The highlight of his day was the present that Ah Gung and Ah Po gave him: a digital camera! Mommy wanted to get him that for Christmas but it was out-of-stock. Of course this is going to be a big hit. Mommy knows his son best! Now he won't be asking for our cameras (fingers crossed). He was snapping pictures non-stop ever since he laid his hands on it. Now we just need an unlimited supply of batteries! Or, he will get bored of it in a day.

Logan's Sleep Apnea Test

Logan had his appointment with a Pediatric Pulmologist last Wednesday. Everything seemed to go well. Even the dr. noticed Logan's weight gain and his strength. She increased the dosage of his medication as he's getting heavier. She also made a referral to a Pediatric ENT specialist to look at his upper palate, which might be why he was having a difficult time feeding. Another big thing that came out of the appointment was the sleep apnea study referred for Logan. In order for him to be off his oxygen, he had to go through the test to make sure his oxygen saturation remains in the 90s.



The following night, Mommy stayed with Logan at the Kaiser Sleep Medicine center in San Jose. The stay lasted from 7 p.m. to 6 a.m. Thank goodness for carpool lanes, if not the commute would be hell. During the study, 21 different sensors were put all over his body and his head. Oh my, did Logan hate this. He was wrapped like a little Frankenstein and it annoyed the heck out of him. He was struggling and crying for 1/4 of our stay there. Mommy had to try her best to rock him to sleep, if not, his movement would impair the test results. The room there was very nice. It felt like a nice hotel room. There was a nice crib, double-bed, flat screen tv, internet connection, and video games. Of course, all we did was trying to sleep. When we left, Mommy asked the nurse how were the results, and she said it would take about 2 weeks to get them. But she saw some pretty low numbers, in the 70s, partly because Logan was moving around. Mommy personally feels that Logan is ready to be off the oxygen. Let's hope the doctor won't interpret the 70s as a bad sign, because if Logan was nice and quiet and not moving around, his numbers should be up in the 90s, if not, high 80s.

Aidan also had his 3-year old check up last Thursday. Everything went well and he's now 39 inches tall and 35 lbs. He was being his curious little self at the office, as this is a new doctor to him. We have chosen the same pediatrician for both Aidan and Logan. We talked about his refusal to be potty-trained (dr. said to leave him alone for a while and try again) and his sleeping habits ( to walk him back to his bed if he climbs up to ours). It would be difficult to fight with Aidan on both issues. Potty training, we really couldn't force him. If he doesn't want to go, what could we do. A dirty diaper doesn't even bother him. With regards to sleep, it's going to be an uphill battle especially now that his bed is in our room. It would be too easy for him to climb up to our bed. We couldn't let him stay in his old room, as Logan has his big oxygen tank there, and we don't want him to wake up every time Logan cries.

Hold on to the little ones... They grow up really fast

The other day, I was reading a friend's blog about her son gaining independence and seems to have matured a lot recently, especially due to the new addition of a baby brother in the family. Her son doesn't want to give kisses or hugs as often as before and this, of course, saddens the mother. That same night, when I went to bed with Aidan as usual, I hugged him tight. It would also sadden me if Aidan refuses to give me hugs and kisses anymore. Every time he kisses me, he would say "Now Mommy is happy", because that's what I said to him when he was younger. Aidan is still very clingy to Mommy and I hate that I don't have as much time or energy to play with him. With the irregular sleep schedule and the lack of sleep, it's been hard being patient with him sometimes. He's been so talkative ever since grandparents are in town, and we can actually understand and have a conversation with him. Sometime it amazes me the things that he says and he actually makes sense. Lately he's been changing the lyrics of songs to make them into new songs, such as, "Twinkle Twinkle Little Baby" or "Hush Little Baby Don't Say A Star" (mixing both songs together and he found that very funny).

Logan continues to thrive. As Ah Po said, he's getting uglier and skinner (Chinese likes to say things the opposite way because babies get jealous and won't get cuter anymore if you said they are cute). He continues to eat well ever since we took his feeding tube out. He's been awake more, and Mommy is trying to track his awake time to see what kind of schedule he has developed. He has many more doctor's appointments coming up this month, and cross your fingers, let's hope all goes well and he can be off his oxygen this Wednesday when we see the Pediatric Pulmonologist. We've also taken Logan out a few times, despite the trouble of lugging the oxygen tank with us. He's been staying in his little room for way too long and a little fresh air will do him good.

Logan will make his little debut this Saturday at Aidan's birthday party. We were hoping to have his Red Egg and Ginger Party on Feb 1 because it coincides with Ah Po's birthday. However, if he's still on oxygen, we would have to delay that. When that long-awaited day of losing the oxygen comes, we'll have his Celebration of Health Party.


*Picture 1: Aidan dragging a bag of oranges after picking them off the orange trees with Ah Po.
Picture 2: Logan enjoying some sun in the park.