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.
These posts are letters written to Logan, telling him how much we miss and love him, and what's going on in our lives. Logan was diagnosed with Leigh's Disease, an incurable Mitochondrial Disease. He left us on April 15, 2009, one day shy of turning 5 months old. We love and miss him so much.
Tuesday, January 13, 2009
Sunday, January 11, 2009
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.
Saturday, January 10, 2009
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.
Tuesday, January 6, 2009
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.
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