Evan is now 2!

Easter Pictures
https://www.searsphotos.com/?shareid=S206929079lXA82FC7W8J



Emma 4 and Evan almost 2 Pictures

https://www.searsphotos.com/?shareid=S206995616lZNC359UMQH

Evan had is 2nd birthday a few weeks ago (then a few more cakes in Chicago with family). He still very snuggly. He still has a lot of baby looks to him, which I wish I could just hold onto. He started jumping when he was about 18 month old. He still loves to be chased especially when we have to change is diaper. He continues to climb on everything he can. Like all little boys, he loves cars and talks about them every day. He’s even taken over Emma’s doll house to use as his garage (at least someone’s using it). His singing has increased to singing all the words to Twinkle Twinkle little Star, Rain Rain Go Away, and Bob the Builder’s slogan. He even tries to keep up with Emma when she sings the Disney’s Car song “Real Gone”. He is singing more letters in the alphabet. Despite his singing abilities, he is continues to not say full sentences. Although at night, when the house is quite (Emma is not talking) and he does not want to go to bed, he babbles away which I think are full sentences If only we could understand his conversation. He loves watching the Disney movie Cars. He is saying all done (finally), my turn, Emma (he really doesn't say Evan), watch Thomas, press play, race car, duck duck goose, choo choo train, Yea chips, not me, and thank you. He can name a couple colors, count to almost 10, take off his clothes and diaper, can put pieces in wood puzzles, and just starting to work with real puzzle pieces. His has not been eating much at all, so it is very hard to even know what is favorite food is now. He does like Disney Cars Campbell soup and popcorn. He loves to drink juice, milk and loves his sippy cup. He continues to gain weight and is now 30lb at our last Dr visit.

He had a great time at Disney in June. He really impressed us going into the 3D movies by sitting and wearing his 3D glasses, although each movie scarred him. He loved swimming every day on vacation. The swimming pool was bath water, so it was hard not to enjoy it.

Starting this year I never had to cancel so many play dates because Evan or Emma was sick. In the beginning of the year, I felt Iike I was at the pediatrician office every week. He either had a bad cough, running noise, ear infection, slight fevers, or diarrhea. We’ll be taking him to Mike’s allergist next week to have him tested for allergy related asthma. His symptom is a bad cough which I first noticed in Nov 2008. It sounds like he is gagging or hacking. He had to do several preventive treats with the nebulizer. He hasn’t had an episode of asthma since May so we are a little relieved and we stopped the preventive treatments.

His ears have been another thing; he has never shown signs of an ear infection; however, he has had an ear infection every month for the last 6 months (Jan 09-June 09). He failed a hearing test, which was most likely due to the ear infection he had at the time, but he did pass the follow up one at the ENT’s office. I find that looking in the ears can be really subjective to the person that is looking in his ears. On two accounts, I have heard two different opinions in his ear diagnosis. The ENT recommended tubes due to his speech delays. His pediatrician wants us to hold off right now, be believes that his ear infections will lessen now that he will be two and whatever speech he has lost he will catch up so at the time we did not go forward with the tubes. Mike and I feel his speech has not been progressing and we had it evaluated and they recommended speech therapy due to his speech delays, which he started on Monday. We really struggle communiting with him even though I’m so verbal and he throws tantrums (he buries his head in the floor and cries) because of it. Even though he hasn’t had an ear infection all summer, we’re still concerned with his speech development so we’ll go back to the ENT later this month to see if he still recommends tubes. If so, we’ll go ahead with them after his next CT scan on October 6th.

I think most of you know of the little scare we had with Evan’s April CT scans and NSE results. And it did not help that there was a lot of waiting in-between tests. I’m sorry I did not update the blog through all this. For those of you that don’t know, on April 9th Evan had his 3 month CT scan of the neck. We received a phone call within 2 hours saying they found a bone lesion on the CT scan. The Oncologist informed us that radiology didn’t think it is cancerous, but because of his background they have to make sure by taking an MRI and check for bone cancer. Then we received the NSE test results which were 28.3 the highest they ever been. We were on pins and needles. Our second Oncologist called us and wanted to put the NSE results to rest. She ordered full sets of CTs (the chest, abdomen and the pelvic) since we will be going to 6 month visits. I requested another NSE test and urine test too.

His full sets of CTs taken on 4/17/09 came out normal!! And the MRI taken on 4/20/09 of the Face, orbit (behind the eyes) and neck were normal too!!! The lesion that they saw on the right cheek bone appears to be air in the bone which is part of the normal growth process.

One spike in the NSE results can’t really mean anything at this point, unless it continues to rise. Especially if non-cancerous and other body conditions (infections) can cause the numbers to go up. The NSE test taken on 4/20 continued to rise again to 42.2. On 4/23, the oncologist believed that he still had an ear infection even though he just finished a round of antibiotics for a double ear infection. We were hesitate to put him on another antibiotic since he has had 5th prescription since the end of Jan, I took him to our pediatrician office the next day and she believe he had mild dullness in his right ear.

The Oncologist again reassured us that the scans are more reliable then the NSE results (unproven tumor marker). Since the CTs and the MRI came out normal we were relieved and the doctors were not at all concerned. On 4/23, the urine test results came back normal. The urine test VMA was 8 (normal range 0-27) and his urine HVA was 12 (normal range 0-42) this was great news since these two tumor markers are proven ones for his cancer. Evan had only taken 2 urine tests in the past and both of them were normal. They stop taking them because it never showed up in his urine.

Normal NSE Levels (3.7-8.9)
2/21/08 21.6
2/26/08 surgery tumor removal
4/25/08 26.7
7/17/08 17.2
10/9/08 12.5
1/8/09 13.8
4/9/09 28.3- double ear infection- put on antibiotics
4/20/09 42.2- finished his antibiotics 4/18

Well, even though the NSE was high, all the other test results confirm that he is cancer free. Our next appt will be in next month.

Here are some more photos taken on 2/16/09
https://www.searsphotos.com/?shareid=S206716823l2869YPHNXD




Our little Bugga Boo, little man, one sock man, Evan is now 17 months old. For some reason, during the day, he normally pulls off one sock and at the end of the day he continues to wear just one sock. Sometimes it’s the right foot, other times it’s the left. He also doesn’t like to sleep with blankets. If he’s asleep, but not in a deep sleep and you try to cover him up, he’ll kick off the blankets. He had climbed out of his crib about two weeks ago, breaking Emma's record. At Grandma’s Chicago house, I was playing with Emma’s new cash register and talking into the microphone and I just happen to say to Evan I love you and my heart just jump for joy when I heard him say it back. That same day he also took us by surprise and sang words to Twinkle Twinkle Little Star. He has hummed to songs before, but this was the first time he actually sang words to a song. When we came back from our Christmas in Chicago trip, Evan woke up one morning and did not see Daddy, and he said I want Daddy. I want Daddy. My heart melted again. I was so happy Mike was in the other room at the time. One of his new words is TV, the letter Y which I call the YMCA, car, turkey, juice box, and up-ee. He likes to put toys in and out of buckets, and has just started to build with logos. He makes the car sound zoooooom. Evan doesn’t mind if Emma open’s his string cheese or on rare occasions brushes his teeth. However, he doesn’t want her dressing him (I think he knows it’s only a matter of time before she tries to put her princes’ dresses on him). He does like to join her standing on a chair, or eating some of Emma’s food she could not finish. He really likes doing things she is doing or mimicking noises she is making and sometimes they get very loud. Milk is his favorite food; I have to buy two gallons a week just for Evan, although the DR just said I needed to cut back. He now climbs in his booster chair when he’s hungry and waits for us to bring him food. I can’t wait to hear more what he has to say.



On any other day when I approach the hospital I’m fine passing it. However, for some reason the site of it of it on 1/8/09 the day of his 5th CT Scan made me teary eyed. I told myself, I just needed to stop and I was fine for the rest of the visit. The hospital visit went smoothly. They drew the blood for the NSE (Neuron-Specific Enolase) his tumor marker and the CBC (Complete Blood Count) at the hospital. Evan did not want to wake up from sedation, sometimes I just wish we could let him sleep until he woke up on his own. He wasn’t very hungry after he woke up this time. He has to fast every morning of any of his CT scans. His DR visit was the very next day to go over his Neck CT Scan results and CBC. The CT scans and CBC came out normal!!



We had to take the NSE test twice, his blood always clots for this test. His blood counts actually increased slightly this time from 12.5 to 13.8, normal range (3.7-8.9). I really did not expect this. I was hoping his counts would finally be in normal range. Since I know counts can fluctuate and the NSE test is not a proven tumor marker and DRs don’t get concerned unless it’s in the 100’s, I won’t worry too much at this point. The Dr said since we were a little short of a year since surgery 2/26/08 he would have to take another CT in 3 mos which will be scheduled in April 2009. The next CT scan should be taken after 6mos have past.