I thought you all might want to hear what has been going on with Ricky.

Ricky is still at the children’s shelter because of his bipolar disorder and us being unable/unwilling to have him at home — not wanting to endanger the other children. We are having court this coming Friday. The social worker had to file another petition in order to keep Ricky at the shelter when the director of DFCS suddenly demanded that he go home if there was no petition, a few weeks ago, and this will be a jurisdiction disposition hearing (where DFCS would officially make him a ward of the court).

Well, since the petition was filed, we have worked hard via therapy and home visits to get ready for Ricky to come home. He has also had some med adjustments and I think that has made a difference. Anyway, Ricky was home ALL WEEKEND, the longest amount of time yet, and it went really well. I am so happy! I have missed him a lot and it seemed really sad to take him back to the shelter tonight.

So hopefully we will have him home within the next couple of weeks. At the hearing on Friday, the social worker is going to ask the judge for a continuation to give us just a little more time. Keep your fingers crossed that things continue to go well!

Ricky’s health has been excellent. At this point he has not been in the hospital since April of last year. He has put on some weight and I think he’s also grown taller. We will find out at one or another of his several upcoming specialist appointments. He has been having some knee pain, and the nurses at the shelter have been theorizing that this is due to growing pains. I have heard of this happening with boys around this age.

The last week of school, Ricky was kicked out of the public school he was attending because he had a rage and injured people. We have been battling with the school districts (our home one and that one) since then but meanwhile he is attending a very rough private school for kids with behavioral issues. It has turned out not to be a good environment for him so I have requested another IEP meeting to get him put into another school.

We want to thank everyone as always for sending cards, letters, and other things. It really means a lot to Ricky to get mail when we bring it to him at the shelter.

Last I updated, Ricky was having some psychiatric problems. Well, these things are still going on. He was in emergency psych at that time for a week, and then was at a short-term residential facility for a month. During that time, he had home visits, and wanted to get a Build a Bear, so he “sold” me his Toys R Us gift card from MACS and bought a Build a Bear at the mall. (I will put pictures in his MACS album.)

Ricky came home week before last, but only lasted three days before he had a rage again and had to be taken in an ambulance to the emergency psych unit again. From there he was put into the children’s shelter, where he is currently waiting for a longer-term residential psych placement. In a residential setting, Ricky can get the med adjustments and therapy that he desperately needs. The placement is made more complicated by Ricky’s medical needs, which necessitate a nurse being hired.

I wanted to say that we still appreciate the cards and letters that have been sent to the boys. I do make sure that Ricky gets everything that is sent to him, so please keep them coming. I am sure that he is homesick and sad, and getting mail can only help.

Thank you all, and I will keep you updated on Ricky’s progress toward getting placement.

We have been having a rough time with Ricky. Though his cystic fibrosis has been stable, he recently had a seizure and has been undergoing testing to find the root cause. Additionally, he is currently hospitalized for psychiatric problems.

Please keep Ricky and family in your thoughts. We are all having a rough time with this.

Ricky broke his right arm (luckily he is left-handed) in PE yesterday, 1/25/07, when he tripped over someone’s foot and fell straight forward, hyperextending his arm when he put his hand out to catch himself. He cracked his humerus right above the elbow. I’m having deja vu here, because almost four years ago, Ricky cracked the same humerus, a little higher up. I’m not a doctor, but from what I saw on the x-ray, this time it appears to be a worse break.

Luckily, I suppose, Ricky has a high pain tolerance, and did fine at the hospital. He’s got a splint on the arm now and will be going soon (hopefully tomorrow) to get a cast put on. He’s already getting the hang of doing everything one handed (even getting into his loft bed).

Just wanted to let you all know…

Ricky is doing well. He saw the pulmonologist on January 9 and his lung function numbers have not changed — still pretty good! The big problem he is having is his weight. He has been losing weight. If this keeps up, he’ll have to get a g-tube. We’re hoping to avoid this so he’s having lots of nutrition shakes and other things to get his weight back up.

Andrew and Misty are also fine… Growing like weeds. What happened to my babies!?

We were overwhelmed with the HUGE number of cards and gifts that Ricky got for his birthday and Christmas. Thank you all!

Happy new year everyone!

The time is flying by. Ricky is doing quite well medically and psychologically. His ENT says he doesn’t need to come back for a sinus check for 18 months. His lung function is down a touch and his cough is a little bit increased, but he’s still his usual energetic self. He’s also stable with his bipolar disorder.Andrew is also doing well, and Misty is three months old now and growing like a weed. I’m back at work now, and Dave is working hard as usual.Thank you to everyone for the continued cards and gifts.

I would like to apologize for the lateness of this update. We have been busy with our NEW BABY! That’s right, Ricky and Andrew’s new baby sister was born on July 20, 2006, at 7:57am, weighing in at 7 lb. 15 oz. with a length of 21 inches. The boys are absolutely in love with their sister.

Here is a link to the MACS album I just made with pictures of Misty with the rest of us:
http://tinyurl.com/zqy9l

Ricky has been doing great. His moods have been quite stable, and his cystic fibrosis is currently under control. Also, he started in the special day class at a new school yesterday — the same one Andrew has gone for two years. So far he is enjoying it and they are both enjoying being at a new school. Can you believe that next year Ricky will be in middle school?

That is it for now, but I want to close by thanking all of you for sending letters, cards, and care packages to the boys. They love getting stuff in the mail and knowing that people are thinking of them. A special shout out to Julie and Shayne!

Today (6/27) was his latest CF clinic visit, at 11 am. Ricky’s spirometry numbers were down, his lungs sounded a little junky (not awful though), and as I suspected, he has lost a pound. (His appetite the past few weeks has been horrendous.) He has lost 5 pounds in the past six months (and he definitely looks it) and his height growth has also slowed down.

Soooo, we got some new prescriptions: One for Bactrim, two for normal saline and hypertonic saline to put together so he can start hypertonic saline treatments, and one for Periactin, an antihistamine that is supposed to increase his appetite. We also took home some chocolate Scandishakes and Carnation Instant Breakfast cans along with an action plan from the nutritionist.

Good news: Sinuses looking great, tummy soft, and he’s compliant and actually knows a bit about his meds. They want us to educate him more about his meds so he can recite stuff himself. I can do that.

We will start the Bactrim tonight, the hypertonic saline as soon as the pharmacy gets it in, and the Periactin as soon as approval is obtained from the psychiatrist. The CF doc just wants to make sure that the psych meds don’t interfere with the Periactin and vice versa.

Tomorrow we are going to see the NP at the gastroenterologist’s office because Ricky’s reflux has been increased. Since that’s a darn good reason for him to maybe not want to eat, maybe they’ll want to increase his anti-reflux meds?

Before I go I want to thank all of you who continue to send letters, cards, stickers, pictures, books, and everything else! We just renewed the PO box. Ricky and Andrew love getting mail and so we’re going to keep going. The mail really gets us through the tough times.

I forgot to update you all… Bad me. Ricky came home last Friday (after 9 days) after his chest x-ray came back better than on admission (still not perfect) and his PFTs came back beautifully (86%, his best score in over a year, which makes me wonder why nobody noticed his decline til this month!).

The day after he got home, Ricky started refluxing pretty badly. This is pretty weird since he’s on an adult dose of Prevacid! It has subsided… But if it doesn’t stay away the GI has a few tricks up her sleeve.

Oh, Ricky also had a fecal fat measurement test and we’re waiting to hear about the results. It might take a while but it will be worth it since we can find out if he needs to be on more enzymes.

Andrew is doing well, gradually progressing in mainstreaming at school. I wish he could progress faster, since he is incredibly smart, but sometimes one must wait for good things.

Dave is doing well… I can’t remember if I ever shared that he got promoted to the manager of his nursing unit. Being a manager means mega stress but he’s handling it really well. I don’t know what we’d do without him.

As for me… Yesterday I experienced for the first time ever, preterm contractions. So I’m sitting here drinking gallons of water and juice (it’s supposed to help) and I’ll see the OB this afternoon to see what she says will happen next.

Yes folks, after a really rotten chest x-ray a month ago, and an even more rotten chest CT two weeks ago (along with continued weight loss), Ricky has scored a bed in the hospital for a clean-out. :(

Last night he got his PICC line in, but there was so much scarring the PICC team was not able to get the line all the way in, so it’s considered a midline (which should still be able to accommodate his meds and blood draws). A similar thing happened the last time they tried a PICC (October 2004) on the OTHER side. So it may be the end of PICC lines for us. I don’t think he’s in often enough to have a port. So, blah.

Otherwise, Ricky’s in good spirits. To him the worst part of the hospital is the pokes. While he’s in he’ll have a 72 hour fecal fat test (we just saw the gastroenterologist on Monday and is ordering this). He will miss today and tomorrow from school and then be in the hospital all next week — his spring break! Ugh for him — good for not missing school.