5-Year Old Well-Child Check-Up

Dear Logan,

It's that time of the year again, the annual check-up. I really can't believe Aidan is 5 already.  He behaved like a big boy at the doctor's office and I was so proud of him.

He weighs 43.2 lbs (50%) and is 44 1/8 in tall (75%).  He got his blood pressure checked, and had his first hearing test done since he was discharged from the hospital when he was a newborn.  He followed instructions well, and was able to verbalize and show us what he needed to do.  He also had an eye test, which was a simpler version of the one at the Optometrist Office.  All numbers and tests were good.

He waited patiently in the room, and entertained himself with a book.  When the doctor came in, we answered the usual questions, and she did her usual check-up.  Everything was fine, except the doctor noticed some redness in his throat and his nose.  I guess that meant he might be coming down with a cold soon.  And TA-DA!  He started coughing the next day.  Maybe I jinxed myself by telling the doctor that Aidan has been pretty healthy during this flu season.  Oh well....

We will probably come back in 6 months for a TB test for Kindergarten.  Aside from that, let's hope we won't see the pediatrician until next January.


Love you,
Mommy

Aidan still has a fever... but he's active as always

Day 23 - Hospital Stay
Day 18 - Intubated

Aidan stayed home today and didn't go to school. So, I was unable to head down south to be with Logan. I did check in with the doctor and the nurse to see how he's doing. They started the first rounds of the new drug yesterday and was able to decrease the ventilator rate from 20 to 12. That's the lowest they could go from now. They are going to increase the dosage and see how Logan reacts to that. Hopefully, it will be able to stimulate his central nervous system to take in bigger and more frequent breaths. The Urologist said his VCUG result was fine. He did recommend doing another X-ray from the bottom up again. The Director has placed a call to the Genetics counselor to see when the blood test results will be back. For now, everything is stable. I don't think I will be able to go down to see Logan again tomorrow, but I will surely call to check-in.

Aidan, on the other hand, still has a low-grade fever. I took him to the pediatrician today since he's been coughing and has a runny nose for two weeks. It seems like he's been getting back-to-back colds. Doctor said his lungs sound clear and it's probably viral. Nothing much to do except giving him some Tylenol or Motrin to keep the fever down. He said if the fever continues to last for 3 days at over 103 degrees, then we need to bring him back. Or, if he's coughing lasts for 3 weeks and more without getting any better, or his coughing happens mainly at night, we should take him in for another check-up.

Aidan is active as always. Once he slowed down, I could see that he's tired. Unfortunately, he only napped for an hour today and he woke up with a higher fever. I gave him some more Tylenol. His head still felt a little warm. I think I might try some Motrin later and see if it works better. Will have to keep him home again tomorrow.

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.

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.

Such a good big brother....still...

It's surprising how well Aidan adapted to our newest addition to the family. We haven't seen any signs of jealousy yet and he seems to really enjoy being around Logan. He would like to hang out in his old bedroom aka Logan's room with all of us, petting Logan and singing to him when asked to. Speaking of singing, when I was trying to get Logan to sleep the other day, I told Aidan to sing Logan a song. He sang "Twinkle Twinkle Little Star" and said the Chinese words ("gau gau ju" aka. "sleep sleep pig" if you know what I mean) that grandma said to him when trying to get him to sleep. Today when we're trying to get Logan to sleep, Aidan sang a song and said those words again without prompting. So cute! I wish they will continue such great relationship through the rest of their lives.

Logan went for his first well-baby dr. visit last Thursday. We updated the pediatrician on what's going on with him, and of course the pediatrician read Logan's file as well. The ped noticed Logan has a very arch-y upper palate in his mouth and wondered if that's why he's not eating well because the nipple that he uses doesn't fit him right. He said he might refer him to see a specialist to determine if it's a cleft palate, and would also refer him to see a nutritionist as well if that's the case. He gave us two bottles that are used for babies with cleft palates to try out. He also mentioned referring Logan to Golden Gate Regional Center! I know oh so well about that agency and kinda freaked out a little. Nothing against GGRC but because I know their services , I hate to feel that my son needs their services. The ped said this is just in case Logan needs any speech therapy or occupational therapy in the future and it's one of the things on his list that he would like to mention. The referral doesn't need to be made now.

I went online to look up some info on cleft palates. It's treatable with surgery but I wish that's not the case. Who wants to put their baby through surgery if avoidable? We've tried to use those new bottles but they are too slow for Logan. I read that most parents need to made the nipple hole a little bigger. We have yet to do that as we don't know what's the best and most sanitary way to do so. The opening is a "X" so we couldn't just poke the hole bigger. Might need to get a special knife to do that.

Feeding is still a challenge as Logan can't take the whole bottle without using the tube. Throughout the day, there might be 2 feedings where he could take all 80ml in by himself in 30 mins. I wish this would change soon.