I took Ricky to the pulmonologist on Tuesday for full pulmonary function tests (his first time) and a visit with the doctor. He also had his blood drawn and sputum collected for a culture. He was GREAT through everything (didn't even cry during the blood draw)... I am so proud of him. I also introduced Dave (my fiance, who incidentally is a pediatric RN) to everyone there and they were pleased to meet him.

The PFTs came out great. I called today for more details, and the doctor says there was a little air trapping here and there but nothing serious, and it was definitely relieved with a breathing treatment. It actually sounds like she was very impressed with how he is doing.

He is also now 4'5", which has put him off the top of the height charts! Although his weight on the charts is still average, it dropped a few pounds, which is not unusual considering he had the flu a few weeks ago and didn't eat for 3-4 days. He did have Tamiflu when he was sick, which we think shortened the length of his illness.

Ricky has had mold (aspergillus) growing in his lungs for some time and has been on medication (itraconozole) for it. The doctor is willing to let him come off the itraconozole after his IGE blood level has been below 200 for three months. I just got back his results from Tuesday and the level is still in the 200s, but lower than last time. So we are on the right track.

So far his sputum isn't growing anything, but we'll know for sure next week. I'm sure he will grow Pseudomonas, his usual bug. I hope nothing else! We will also get the rest of the blood test results next week, and we'll be going back to the clinic in 3 months.

Last week, we saw the psychiatrist. Ricky's been doing really well in school and behaviorally, especially since Dave, my mom and I started using 1-2-3 Magic for discipline. So his psych meds are staying the same and we will be going back in a month or so.

A few weeks ago I requested learning disability testing for Ricky (through the school district), and that is in progress.

Hi there, just wanted to send a quick update on Ricky.

Ricky's doing great, still growing like a weed, and his lungs are doing
great. He turned 8 on November 26, and November 20 marked a whole year
since he got out of the hospital (yay!!!). Ricky's psych condition
seems to be under control too, and he's been putting on lots of weight partially due to the meds he's on. Extra weight is always good for a kid with CF, so we're happy with it.

Looks like we'll be able to send a new picture of Ricky soon for an
update, as his school photos should be coming to us soon, so you can all see how grown up he is now. His face has filled out and he has a dimple in his chin now, and demanded that his hair be cut short the last time, so he looks so much older than before!

Ricky's doing super well in school, learning lots and consistently
getting "top points" for behavior!

Ricky has had a little cough lately which had me nervous but it's not
too bad. Could definitely be worse. He's been out of the hospital almost a year (will be a year November 20) and I'm hoping we can push it wayyyy past a year. At his last clinic visit he was in the high 80s and 90s for his weight and height percentages, which are remarkable for a kid with CF

Just wanted to pop in and mention that Ricky is doing really well in school. He's really liking it. It's the same school he was at the end of last school year and for summer school, but he seems to have started back refreshed, which is really nice. He did have some behavioral problems there in the summer but luckily this school has permission (from me) to restrain him gently and put him in a quiet room til he calms down.

Anyway, he's so excited about it that he's been doing his homework at day care rather than waiting til he gets home, which saves us an incredible amount of time (the time spent doing the homework plus the time we usually battle over doing the homework), meaning the boys actually get to bed on time!

When it comes to the cystic fibrosis, Ricky has also been battling a fungus in his lungs (an effect of him being on antibiotics so much) but after a few rounds of prednisone and anti-fungal medication, he is doing pretty well with that.

Ricky was at the CF clinic today for his 3 month checkup and he is doing great. He's at 90something percentile for height (4'3") and 50something percentile for weight (60.5 lb.). His lungs sounded great. His oxygen saturation was at 96% and he had his best pulmonary function test ever. Great news all around. We're supposed to stuff more calories into him (as always!) in the way of Ensure Plus shakes.

Since April Ricky has been going to a private school for kids with
learning difficulties and he's been doing great there. He is just
about to finish summer school and then he will be in second grade
starting at the end of this month.

I'm coming to the realization that there may be more wrong with Ricky than I first thought... Or even second thought... He is diagnosed with CF and bipolar disorder at this point but I wonder if there's something else going on because we just can't seem to get through to him on proper social boundaries etc. For instance he goes right up to complete strangers and starts conversations etc. And when other kids tease him or whatever he thinks they are his friends. And his peer and sibling relations are just impossible. He just doesn't "get" things that he should get.

His current school placement (a private school that the school district is paying to put him in, since they have no appropriate program) is also awful, so we are exploring (with the help of the school district) other options.

Well, I'm afraid I have bad news on Ricky. He is currently suffering
from a fecal impaction. He's being treated with heavy duty laxatives and we're hoping something happens. If it doesn't, he could end up in the hospital in more major treatment.

Ricky hasn't had this problem since he was born. However, ever since he
was in the hospital in November and was put on IV SoluMedrol (steroid)
for his breathing, he has had problems with bloating, distended abdomen,
constipation, and pain. I'm hoping we can get it cleared out now so he
can get back to feeling better.

ouch!

My poor baby...



He broke his arm at school on Friday.

It was 7 years ago today...

Ricky was in the hospital for two weeks with a very nasty pneumonia. He got out last Wednesday. At one point he was on oxygen for 6 days continuously.

Today Ricky turns 7. Yes, it was 7 years ago right now that I was carted on my gurney to visit him in the NICU. Such bittersweet memories. Mostly I feel old, knowing that I have a 7 year old. :)

setbacks

9/11 3:40 p.m. Heather from day care calls to report that Ricky has hurt several teachers (including biting Sue) and is destroying the classroom. Tried to tip over the lizard tank. I ask if I can speak with Ricky and he won't speak with me. I tell Heather that I am on my way there. Karen tells me she will mark me out at 4 for 1/2 hour of SIC/FMLA.

4:05 p.m. Sue calls my cell phone to find out where I am. I tell her I am on my way, having been stuck in traffic on 87, and am almost to the Cottle Rd. exit. She says he's getting worse and probably some other things I don't remember.

4:08 p.m. or so I get to the day care. Heather waves at me from the main door over to the other door where Sue's arm is waving at me from the mostly closed door. I enter the classroom and it is completely wrecked. Styrofoam peanuts, bookshelves turned over, toys everywhere, cardboard blocks. Sue tells me he punched her in the jaw, and also tried to run away but she told him she'd call the police if he did that. At some point I tell her he is obviously in a manic cycle. I catch him and hold him. Sue tells me that he can't come back until I meet with her and Mitch. I tell her I will make other arrangements for Thursday the 12th.

4:20 p.m. or so I leave a voice mail for Mitch at CDI asking him to meet with me as soon as possible. Around this time I give Ricky a Zyprexa tablet.

4:55 I speak with Dr. Joshi at Stanford Child Psychiatry. He says I've done what I should have done. We go over Ricky's history again and he says we won't change meds at this time but that we can discuss this further when we see him on the 23rd. He says we'll be getting a new psychiatrist in the future but he will remain involved in Ricky's care.

5:10 or so Dr. Lee calls to see how Ricky is doing because of his cut on the head and ER visit the night before. I end up telling her about his behavior issues and then we get into the aspergillosis. She expresses her sympathy and says she'll be faxing a lab slip to Good Sam.

5:55 I get off the phone and call CDI and talk to Mitch. He claims he never got my message. He says "nothing has changed". I tell him that Ricky did very well for a month and this is just a temporary setback. He says it's more serious because staff and students were put at risk. He says he can't meet with me until Friday morning. I emphasize that I need day care ASAP. He says he's waiting for a fax from Sue at the day care and does not know the background yet. I press him and he says that we can meet only with Sue if she is comfortable with that.

6:00 I call the day care and have Tiffany call Sue to have her call me.

6:04 Sue calls me back and we discuss the situation. She has just gotten off the phone with Mitch. I tell her that Mitch has said that I could possibly meet just with her. She says Mitch never said anything of the sort to her and that he needs to meet with us. I tell her that I wish they would take into account all of the good behavior and not just look at the bad. She says it's more serious now because he hurt her and other staff members, and ran into the other classroom to hurt other children, unprovoked. To me it sounds like he is not going to get to go back. She promises to call Mitch and call me back whenever he calls her, whether it be tonight or tomorrow morning or whatever. I say okay and give her all of the phone numbers.

9/12 7:35 a.m. I drop Andy off at Tiny's and press Tiny to take Ricky tomorrow. I explain the busses to her and she reluctantly agrees. We briefly discuss her taking him on a more regular basis until we can work something out.

9:20 a.m. or so I leave a message for Susan Duncan at SARC.

11 a.m. or so Susan calls me back. She expresses that Ricky would qualify for SARC services if he is mildly retarded i.e. depending on his IQ scores. We talk a bit more and I tell her I'll send a copy of his IEP to her. I get her mailing address.