A Busy Day!

Dear Baby,

Wow, Mommy had such a busy day today! It started when I dropped off your big brother from school at 9:30 a.m. and ended after I picked him up at arrived home at 7 p.m. Non-stop! Let me tell you what I did today.

After dropping your brother off at school, Daddy and Mommy went down to the location of our future home. It's the first meeting with the Superintendents and our future neighbors at our new townhome in Sunnyvale. We toured around the site and saw that the foundation has been poured. We will have more of these meetings in the future, showing us step-by-step how our home will be built. This is exciting! This is probably going to be the only meeting that Mommy could attend. When I go back to work, it would be difficult to come down to Sunnyvale. But Daddy will try to attend those meetings. We met our future neighbors, who we have met several times when going to the model homes. This family has a young baby daughter with Down Syndrome, and is about your age. The mommy asked me how you're doing, and I had to break the news to her. I know she's sad for us, as her daughter is going through some medical issues herself, and she could imagine the pain that we're going through. But it's nice to see friendly and familiar faces, and to know that they will be living right across from us in the future.

Mommy and Daddy then went back up to San Bruno and had lunch with my old high school friend, Auntie Julie and her husband Uncle Andy, who are visiting from New York. It's been many years since I last saw Auntie Julie. Mommy visited New York many years ago, and Auntie Julie was nice enough to let me stay at her place. Auntie Julie has been very supportive of what's going on and has asked her Church friends to pray for you. Aren't you a lucky little fellow?

Mommy and Daddy then went to another appointment at Kaiser for your big brother. We attended an orientation on the services that their Child Psychiatry Dept provided. We also talked to the psychologist a little bit about your big brother, as your big brother's school was concerned about some of his behaviors and suggested us get him evaluated for Autism. Mommy will have another phone interview with the doctor on Monday, and then will bring your big brother in on Wednesday. Please pray for your big brother. Make sure he's fine. Mommy is not sure how much more emotional stress she can take if your brother were to be diagnosed with Autism. Mommy deeply feels that he is fine, but is scared that the doctor would tell me otherwise.

Mommy's day continued with finally buying plane tickets to go back to Macau. Mommy and your big brother will be going back from May 12 to June 20. I know this is a long time, but Mommy wants to make sure we're back to cheer up Ah Po before her surgery. Your Uncle Carlos and Auntie Mena are also helping us plan our Hong Kong Disneyland trip. Oh, how I want you to be able to go to this "happiest place on earth" with us.

Mommy then went to Bank of The West in Burlingame to drop off the checks for the March for Babies Walk, and got some T-shirts for the walk on Saturday as well. Well, the sizes of the shirts are not perfect for everyone, but at least we have shirts! This is going to be exciting. Mommy also had a conference call with other mommy walkers earlier tonight. It's nice to hear everyone's story and how inspired they are to walk this Saturday. I am really looking forward to it. We all love you, honey, and this event is for you.

Mommy ended the day with attending your big brother's preschool Annual Spring Picnic. Mommy really didn't know what to expect, but was glad to have attended. Your big brother had a lot of fun eating all the fruits and cookies, and totally ignored the puppet show until after it's over. I guess for him food is more important than the puppet show. Mommy also saw how your big brother interacted with his friends. I was glad I didn't see any hitting. The other boy was a little 'wilder' than your big brother, but they mostly played nice. Not much damage, aside from sand in the hair.

Wow, Mommy had a long day! I would have to go to sleep soon. Tomorrow is another big day. Mommy and Daddy would be going to see you and to select your marker. Would you please inspire Mommy tomorrow so that I could select something you like? How about an angel? Mommy wants an angel to always watch over you because I know you will be our guardian angel from above.

I'll see you tomorrow, dear. Mommy will bring you some toys to keep you company, ok?


Miss you,
Mommy

Easter Celebration - Part 1 - Preschool

I left the hospital early today so that I could head over to Aidan's preschool for his little party. Well, apparently most of the parents have to work, and I was the only one that showed up and brought Hank's raisin cookies for the class. A parent brought in juice for all kids earlier in the morning, and one brought in Matzo (gotta celebrate Passover, too). I was actually sad to see that only 3 parents signed up to bring something to school. Maybe Easter isn't such a big deal to many families. Or, maybe there are just too many events like this throughout the school year that parents get sick of doing it. To me, it's more like it's Aidan's first school event that I attended. I will try to attend as many as possible. Enjoy the pictures!

Aidan at story time. He was actually able to sit still, but couldn't resist playing with another kid.



Aidan put on his bunny hat, holding his paper bag, and ready for the Egg Hunt!



"Oooo... I found a green egg!!"



Enjoying cookies made by daddy and the grape juice brought in by another parent. He wasn't a big fan of the Matzo.



Aidan always likes to swing like a monkey outside, before heading into the car.

I'm glad I showed up at Aidan's school. I think he really likes seeing me there. I'm glad to show him that despite all that is happening, Mommy will always be there for him as well.

Aidan is the healthiest of the bunch

Day 29 - Hospital Stay
Day 24 - Intubated

Hank and I are both pretty sick. Hank still has to work, unfortunately, and he's primary on call this week as well. As for me, I feel pretty crappy that I didn't go to the hospital today to see Logan. I am so worried that we have already gotten him sick twice while he's in the hospital. I did speak with the doctor and the nurse.

Logan is still about the same. He had one incident last night that he had to be bagged. It usually happened when they tried to suction his tube and change his diapers. He gets mad. When I was there, I tried to lower his bed so that it's not elevated and the tube won't be pressing against him while they change his diapers. I don't think the nurses were doing that, that's why he gagged every time. I really need to pass that along to the nurses, whether they will do it or not, I don't know. I asked if he has desaturated during the day when he wasn't mad, and it seems like he didn't have any unknown desaturation today. The doctor said the amino acid result came back normal. One other test, I forgot the name of it, is to test the enzyme of the mitochondria, and that came back in the low-normal range. The doctor said she would have to check in with the Geneticist to see if it's a concern. She said that without that enzyme, it could cause muscle and heart failure.

I also talked to this doctor yesterday to get her opinion. She generally agreed with the Chief, especially if it's a mitochondrial disease. Because it's the brain stem cells that are dead, and the nerves are not transmitting signals, these brain stem cells can't be regrown. If they are dead, they are dead. And this is what impaired his visual and auditory functions, and his breathing. His lungs are fine, but the brain is not getting the signal. She suggested me to wait till all the blood test results come back before making the decision whether to get the tracheostomy. I agree with that. I am in no hurry to make any decision, as long as Logan is comfortable and not in any pain.

Depending on how I feel, I might not be able to go to the hospital tomorrow. I am still feeling pretty crappy. Every time Aidan gets sick, the whole family gets sick. I've already religiously washed my hands, and taking Centrum everyday, still couldn't escape that. What if Logan comes home and he gets whatever Aidan is getting. His little body cannot handle all that germs.

Aidan is doing better in preschool. He had nightmares the other night, kept on saying a kid hit him in the bathroom. He mentioned that before, but I didn't realize it would cause him nightmare. This is also the kid that he pushed at school before (among other kids). I told the teacher about it and she said she would keep an eye on them. She said it's possible that this kid might have caused some trouble, but definitely not too many times because she would have caught it. I've seen this kid in school, and he's the active, naughty type as well. So I am pretty sure something happened between Aidan and him. Kids at this age are just impatient, especially boys. This teacher, which I really like, is also getting transferred to another classroom due to staff shortages. That really sucks. She's so nice and always gives us updates on how Aidan is doing. The Head teacher in his class is on vacation for two weeks. That means Aidan will have two brand new teachers in the class for a while. I believe he will adjust, I just hope the teachers will be as nice and as tolerant as this other teacher.

I forgot to mention. Thank you Auntie Stacy for visiting Logan on Sunday. It's nice to have someone to talk to who is not a nurse or a doctor, and to talk about something non-medical. It's nice to gossip sometimes. Thanks!

He's 7 Kg (almost 15.5 lbs)!!

Day 17 - Hospital Stay
Day 12 - Intubated

Look at his big chubby cheeks! He's doubled his birth weight and he's not even 6 months old! For the first 2 months, we're so worried that he's not gaining weight as he's only at 10% on the chart. Now that he's in the hospital, just having milk directly into his stomach, with no exercise at all, he's gaining so much weight. When he was first admitted, he weighed 6.5 kg only.

Logan is currently doing his breathing exercise (only on Cpap) for 2 hours. The two hours will be ending by the time I finish writing this post. His respiration rate is good, still manage to be in the 50s and 60s, despite a few episodes of coughing and gagging that went up to the 100s. It seems like doing 2 hours of exercise is not a big problem. Going to 3 hrs would be a stretch. I actually didn't get to talk to any doctors today. The PICU is full house. They had admitted a few more kids and they are pretty busy. Even without talking to the doctors, I already know what they are going to say. Exercise, take it slow, and wait for blood test results. I am fine with it for the time being.

My sister, Auntie Mena, sent Logan a jade pendant that has been blessed. Because it could be a choking hazard, I attached it to his cute chubby thigh instead of his neck. It shouldn't interfere with what the nurses and doctors have to do with him. Hopefully, it will work out its magic and bring Logan good health.

I also went to the Social Security Office today to complete the application. Basically, Logan will be eligible for SSI benefits if he continues to stay at the hospital or if his stays last a month. When he comes back home, he won't qualify for any financial benefits because our household income is above their limit. But before anything could happen, they need to review his medical records first. Let's see, between $263/mo and having my son home healthy, I think I am going to choose the latter. However, if he can qualify for Medi-cal without the benefits, that would be better. We'll have to see.

After sending out the emails regarding the March for Babies, I've received overwhelming support and concern. Thank you very much!! I noticed that I have two donation tracker, one for the whole team and one personal. Some friends donated through the Team's page and some donated through my personal page. Don't you worry, everything will be accounted for and go to a good cause. If you want, you can be part of my team, have your own personal page and get support from your own friends. Oh, and please join the walk as well!

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How's Aidan doing lately? He continues to be a monkey. Teachers said he kicked a classmate yesterday because he was impatient. We all have to have a talk with him regarding that. Sometimes, he can be so affectionate yet at times so very impatient and act out. He's still not napping in school, so when we pick him up, he's been napping from 6 -10ish p.m., gets up and had dinner and then goes back to sleep at around 11:30 p.m. He just wouldn't nap!

We also got him a new booster seat as he's getting too big for his high chair. He is liking the big boy seat. It's nice and cushiony. I think would like such a cushioned seat as well.

Aidan and his new preschool

Let's talk about Aidan for a minute while I am waiting for the doctors to come in for the rounds.

Today is Aidan's second week of his new preschool. First week was tough as he's not used to being in such a scheduled setting. He was running around, was difficult to get him to sit still during circle time or group activities. He's just so curious about everything and too excited. Of the 5 days he was there last week, he only napped one day. He was so tired after school that on his way back home, he slept through the whole trip, and even slept till 11:30 p.m. a couple nights. Poor guy, it's normally hard to get him to nap, now in a new environment, it's even tougher. Hopefully, this week will be a little easier.

Last Friday, the teacher asked if Aidan has been evaluated for Autism because he has such an obsession with doors and washing his hands. I told her that he hasn't and he is very interested in doors. But probably not washing hands, but just to be able to play with water. I don't think I can handle a child in the hospital, and another one with Autism. I think I will go crazy. However, even though I haven't worked with kids with Autism, with my experience working with adults with Autism and in the spectrum, I don't think Aidan is autistic. He is very touchy-feely, very sociable, has great eye contacts, definitely not monotone and is a very happy child. Aside from the obsession with doors, but then he's not just standing there and play with one door, he would go around and play with all the doors available. He's not obsessed with washing hands because at home, I have to drag him to wash his hands sometimes. He does like to play with water (provided it's not in his head or eyes). So, my unofficial, unprofessional diagnosis is, he's not autistic.

Children's interests do change often, don't they...

Just like all kids, especially first born children, Aidan has a whole toy box of toys. Actually, it's more than just one toy box as there's a box in each of the rooms for him. But he's been abandoning his toys lately and hasn't really dug in it to look for anything. His favorite toys change every so often. At one point, it was the very annoying caterpillar that my parents gave him, then it was the rocker guitar with loud music, then the Barney radio that he borrowed from day care and hasn't returned yet. All of his favorite toys have sounds and lights. Now these toys are untouched. When he opened his Thomas & Friends laptop birthday present, he couldn't take his hands off it. After a day, he forgot about it. Now that I think of it, the only toys that he's been consistently playing for the last few months was his Kidzoom digital camera and my laptop, although he has recently shown interests in his own laptop.

He used to watch The Wiggles concert every single day for a long time. We play their music in the car, watch their concert at home and Tivo'd their show. The Wiggles phase has gone. Then comes the phase of "Ni Hao Kai Lan". Oh my, every single day he wanted to watch Kai Lan, in the morning before daycare and in the evening after daycare. For some reason, he kept on wanting the same "Lu Lu day" episode for the longest time. That was so girly! I guess he liked it because of the bubbles at the end of the episode. He watched it so much that he memorizes everything they said. Of course, we have our fair share of Little Einstein and Mickey Mouse Clubhouse. But recently, he hasn't asked to watch any TV (that's a good thing, right?). Maybe just a little Wiggles concert on the weekends.

One thing I am glad is his renewed interests of books. We used to read when he was younger. His favorite was "Goodnight Moon" (we read it so much that I had to buy a new book as the other one was all worn out). Then we read the monkeys jumping on the bed, and the big nursery rhymes book with Humpty Dumpty in the cover. Then he suddenly lost interests in all books. I tried and tried, as we all know we are supposed to read to our kids and hopefully they will read the whole Harry Potter collection by first grade (HA!). But no, he doesn't want anything to do with it. But then lately, he wants to read again. It's become our bedtime routine. We brush our teeth after dinner, change into his PJs and his nighttime diaper (I know, he's not potty-trained and that's a whole other subject), then he sits on my lap and we read 3 books before going to sleep. His favorite books have been "Monster Munchies", the Toddler Tales of Bartholomew the bear, and his Diego book. Sometimes we will read "Snow" as well but that book is a little longer and I usually suggest the other ones instead when it's close to 9 p.m. Let's hope this reading interest will continue. Maybe now that he's older, he actually understands what he's reading. Of course, he also memorizes those 3 books as well. I wish I have a great memory like that.

We're heading to his new preschool in a few hours for a trial/transition class. Before he starts school on Monday, I'd like to take him there for a visit and see how he likes it. I think it will go smoothly but you never know with kids. He has been clingy ever since Logan was born but maybe seeing other kids doing fun things will distract him enough to not want to stick to me.

p.s. Logan has been doing well. His appetite has slowly come back but I think he's still not eating enough. We have a neurologist appointment on Monday and I will see if he has gained enough weight then.

Logan is a fighter, and he makes mommy stronger

So glad there's Wi-Fi at the hospital so that I can update my blog and have something to do while watching Logan. Ahh..the magic of the Silicon Valley, can't get that at San Francisco Kaiser, at least not inside the ICU.

Logan is doing well and is improving everyday. He started feeding and I have written some tips down for the nurses in feeding him. Logan is a spoiled little lobster and requires a lot of patience when eating. The doctor has decided to reduce his airflow and oxygen level. Hopefully, he can get back down to his original baseline, eat more and continue to grow stronger. Sometimes he still desats down to the high 80s, but he will come back up by himself. I have heard considerably less coughing from him today. It seems like his acid reflux has improved as well. He continues to have breathing treatment and deep suction of the secretions. Oh, how much he hated those suction! At least the one suction session that I witnessed today, he didn't really desat and I was there to comfort him and hold his tiny little hand. Overall, he's doing well.

After consulting with the neurologist, the doctor talked to be about a procedure called EMG. Basically, you use electric shock to shock Logan's muscles and nerves, to see if they are responding accordingly, as he is hypotonic. This is usually done when the patient is sedated, but because of Logan's apnea, it's not safe to sedate him. That means he has to go through the pain. I got a chance to talk to the person in charge of administering the procedure. He evaluated Logan and thought his neck is not too floppy. We could wait it out and see if he would grow stronger. Thank goodness he said that. I don't want to put him through more pain.

Looking back, I definitely think I have grown stronger as a mother. Remembering when Aidan was born, I couldn't bear witnessing his first set of immunization shots. I had to have Hank go inside with him and I waited for that to be all over with. When Logan was first at the NICU, I couldn't bear seeing them draw blood or put in the IV. Now, I have no problem witnessing all that. I am glad that I have gotten tougher, because I want to be there to hold his hand and tell him everything would be ok, when he is going through all that.

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As for Aidan, we finalized the paperwork for him to start preschool on March 2. He would be in the Jellyfish classroom and I am hoping the transition would be easy. He has never had problems going to daycare, or different babysitters. Separation anxiety was never a big problem, only a few incidents after Logan was born and he didn't want to go to daycare. Depending on how long Logan would be staying at the hospital, I might be able to take Aidan to the new preschool for an hour or so, a day or two next week, to help with the transition. Last time we brought him to check out another preschool, he didn't like it after he went inside because he saw the kids waking up from their naps. He does not want to nap at all! Hopefully, this time, he would be having fun and not be too clingy to me. I hate to let him start school without me being there to support him, just because his little brother needs my constant attention at the moment. Maybe everything really happens for a reason. Logan's hospitalization gives me the opportunity to focus on Aidan a little more during this transition and big milestone in his life.

A stable night with a few "adventures"

The first night at the PICU was ok. Logan had 4 desaturations (2 in the 20s, 1 in the 60s and 1 in the 70s) during deep suction. Deep suction was when they tried to put a thin suction tube in his nose all the way down to his throat to suction the mucous out of there. He didn't like it very much (of course, who would ?!?!) and when he's upset, he decided he didn't want to breathe and hold his breath. He was like that when he's younger, just hold his breath when he's upset, and now he's doing it again. Aside from that, I think he was fine.

During rounds, it's been decided that we would slowly feed him formula again instead of using IV. When I was there, I fed him some pedialyte, just to see how he took it. He took it fine and the next round of feeding, he should be taking normal formula, and no more special fortified one as he's getting chubby. A nutritionist will see him soon to confirm that he doesn't need the special 24 cal formula anymore and can have normal 20 cal ones.

Since the oxygen set-up at the hospital was a little different than at home, I asked how much oxygen he is using currently, compared to the 3/4 L that he's using at home. It seems like he's not using that much higher oxygen content, it's just the flow of air was stronger. As he's been doing ok, they decreased the flow of the air, and hopefully he would do well. He's also starting breathing therapy, by having a nebuliser emitting medicine so that he can breathe in the medicine to loosen up the mucous in this throat. While they're doing that, they use a rubber thingy to pound on his chest and back to help with the loosening of the mucous.

The PICU doctor said he would contact the neurologist to get more information on Logan and to see if there's any further testing that she would like to do. Santa Clara Kaiser has another Pediatric Neurologist, and I might meet with him as well, just to get a second opinion (it doesn't hurt to do so since Logan is there anyway). I might also consider him doing a muscle biopsy, after getting all the details about it. All of his tests came back negative (including the recent flu virus and RSV), and we still don't know what causes the hypotonia and the central sleep apnea. I am hoping the muscle biopsy can shed us some light. At first I didn't want Logan to get it, as it sounded really painful and I didn't want him to go through another test, which the result might come back negative as well. But with this hospitalization, he might as well do it since he's there, and if we can find out what's wrong and treat it, we don't have to go through this every time he gets a cold. We all know that babies get 8-10 colds a year!

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On a different note, we will be finalizing the paperwork for Aidan to go to preschool tomorrow. This is going to cost us an arm and a leg every month, but it's necessary. This branch of CCLC that we have selected is in Downtown Palo Alto and our friend's kids go there as well. The preschool is more along the way for Hank to transport Aidan everyday, and they close at 6:30 p.m. instead of 6:00 p.m. It is expensive, but he's getting too old to stay at the family day care. He needs to hang out with kids his age and to learn more. We're hoping he can start on March 2nd.