December

Once again this month has blown by and it is almost Christmas! This month is always filled with ups and downs for us. The 15th is Mom's birthday, but it is also Colton's birthday. He would have been fourteen this year. Colton we miss you buddy, until we meet again!

The 16th is the anniversary of Billy Boy's cardiac arrest and like it or not, it is a very emotional day for us. It is the last time we saw our son walk, talk, smile, laugh and love. Three years ago we were robbed of the beautiful son we once had, and left with a boy I have learned to appreciate. I love every minute I have with Billy Boy and try not to take that for granted.

This year (to add to the excitement) Billy Boy choked on the 17th and we had to call 911. In the end he was ok, but it was a very scary 10 minutes. He turned pale, his oxygen saturation levels dropped to 71 and he started shivering uncontrollably. We put him on 6 liters of oxygen and suctioned him till the fire dept. arrived, by that time he was back to his old self. They took us to Loma Linda where they ran a couple of test and xrays just to make sure it was all ok.

It has been a very rainy month which is bumming Billy out since he doesn't get to ride his bike. Decorating, shopping, wrapping, and crafting has been done, we just have baking left and Billy has cooking. Monet is so excited for Santa to get here. He even mysteriously sent her a letter and $100.00 gift certificate this year?!?!

From our family to yours; Merry Christmas and Happy New Year!!!!

November

I can't believe how fast time is flying by, seems like yesterday this year started. Now we are almost in December. We've been having some chest issues with Billy Boy, very usual for him this time of year. Thanksgiving was great!! Thanks to Billy (Dad) and his awesome cooking! Also, thanks to my wonderful family for all you do for us!

This month Billy and I got to take Monet to Disneyland and I got to take her to Legoland (with tickets she won.) We had a great time with her.

Our nurse is working out great, she really fits in perfectly with our family!

Monet did awesome on her report card as usual, but I have to say she puts time and effort into it, so we are really proud of her. We are ready for Christmas (and hopefully for the emotional roller coaster this month seems to bring with it.)

October

It is fall and with that comes allergies, colds, and the flu. Monet already got her flu shot and is taking allergy medicine (she 's had problems with her tympanic membrance and allergies make it worse.) Billy Boy has been fighting some allergy, cold, lung infection thing for weeks now. We are trying to fight it off before it turns into something worse. We are scheduled to get our flu shots along with Billy Boy at the end of the month. I love when the weather finally changes, but I hate that Billy Boys health always takes a turn for the worse around this time of year.

Monet got a Super Tiger award at school for confidence. Every year she seems to get the same award. She is practicing for the church Christmas choir and really enjoys taking boxing. She has also started making her Christmas crafts.

Billy and I have been busy with work, and taking care of things. We got our mailbox broken into and had to close our account, have our credit watched and all that fun stuff that goes along with that. I guess if it's not one thing, it's another.

September

Wow, it seems like I just wrote the last blog and it's already been a month. Time passes by in the blink of an eye.

Monet is loving her new class with her new teacher Mr. Cook. He was Billy Boy's teacher the year he went into cardiac arrest. Billy Boy loved having Mr. Cook as his teacher and now Monet gets to enjoy him too. She has made two really good friends that she hangs out with all the time. The best part is they all get along and no drama is involved in their friendship. She also started her boxing class and is really enjoying that as well.

Billy Boy just had an appointment with his new Orthopedic Surgeon. I really liked him and got a good vibe from him. He said just leave him alone for now and in the future if Billy Boy is in pain, the surgery he would be require would be relatively easy. His comfort is what is most important at this point. Billy Boy is doing pretty good, he started having a problem with allergies, but we took care of that right away.

Billy and I are still exercising, we also started going to the dentist. Ouch!!! Billy has needed a ton of work done, and even with insurance it is EXPENSIVE!!! However, they are trying to save his teeth. Billy turns 50 this week!!! Happy Fricken Birthday! Lol!

Back to school

The summer is over!! Back to school, exercise, routines... Monet is happy to be back in school were she gets to see her friends. Getting back to the homework routine is another story, but she will get into the habit quick enough. I'm not too crazy about ther teacher for a few reasons, but am in the process of trying to switch.

Our nurse is working out great, even at her size, she is finding ways to compensate. Our last Drs. visit went good too. She told us if it bothers him that much to stand up, don't do it. She has several patients that don't stand because it causes pain. The down side is he can get osteoporosis, but sometimes if they are in pain, it is a chance you have to take. He is still having problems with his lungs, but I think that will be a lifetime battle for him. Monet has been reading to him every day, and I think he is enjoying the sound of her voice. He is still smiling a lot, and I've even heard him make a few new sounds.

My sister in law, Penny is doing a walk in honor of Billy Boy. If anyone is interested in supporting her for this great cause, please donate at: http://pages.lightthenight.org/dm/Westside10/pebbert

Your support for this great cause is needed now more than ever!! Don't let one more child go through what Billy Boy has had to endure!

Summer

Gosh, I haven't posted in this blog for a while. Hopefully everyone isn't loosing interest. We've just had such an awesome summer after a couple of years of "not so great ones". We truly tried to remain busy and enjoy ourselves as much as possible. We went to movies, bowling, shopping, lunch dates, museum, a water park, and Knotts Berry Farm. Monet also had many play dates with her friends. It's been really great to relax, get some sleep, and enjoy ourselves. (Although I haven't managed to get hardly any exercise time in, so it is time to get back into the routine. I still have a long way to go.)

It was made possible with the fact that Billy Boy has been sleeping nights, smiling, and even laughing again. The down side to that is I haven't been standing him up. When we stand him up, he is in so much pain, that he doesn't sleep all night (and either do I.) I will have to address that on Thursday at his next Drs appointment with the Rehabilitation Specialist. Is it really worth the pain we put him in, especially now that his hip is dislocated? I think his quality of life is important, and he has already suffered enough. I can't bare to think of going through that again. We have also managed to get him off a bunch of medicines that he didn't really need.

The weather this summer has been beautiful!!! I couldn't ask for nicer weather. This has been the coolest summer we have had since I moved to Riverside 10 years ago. I can't believe I've lived here 10 years already!!

Camp Ronald McDonald for Goodtimes

Monet had a fantastic time at camp! She talked about it for days, what a terrific experience for her. She did faint the first day, but it was due to not eating or drinking all day (because she was nervous.) The rest of the time, she had a blast. She made new friends and memories she will always cherish. I had a harder time here, but thanks to some awesome counselors and friends of ours, they kept me posted on daily activities that take place. Since I can't be out of town for more than day trips, I'm happy she has a place where she can go on vacation. She is now looking forward to winter camp.

Camp & Nursing

Monet finished Vacation Bible School and had a great time! We dropped her off yesterday at Camp Ronald McDonald for Goodtimes. I miss her already, but I know she is having the time of her life. Swimming, horseback riding, hot air ballon, archery, fishing, firecamp skits... and new friends.

My nurse Dorcas' last day was yesterday. The nursing agency sent me the nurse they wanted, we'll see how that works out. One of the problems is that Billy Boy is 5'5" and 130lbs., the nurse is 4'10". He is big and hard to move, so far I've been here to help, but I want to make sure she can do things on her own. Also, she has never done nasal suctioning, which is what he gets. The agency has lied to me several times and that really bothers me. I may keep this nurse while I hunt for a new agency.

Summer has been great so far. The temperature has remained fairly cool. I can't wait for Monet to get back so we can do more things!

Summer

Summer vacation is here, and we have been busy. Monet ended the school year with a bang and a really fun party. She once a gain got straight A's the whole year. Billy Boy has had his ups and downs, but is feeling better. Dorcas, his nurse is leaving us after one and a half years to get her RN. She will always be a part of our lives, but we wish her the best! So, we are interviewing for a new nurse. I've had a few problems with the nursing agency, but if I continue to have them, I will switch agency's as well. I did like one of the nurses that we interviewed, but the agency wanted me to take another. If I don't get the one I wanted, I am done with them.

Billy Boy's orthopedic surgeon has left Loma Linda, so we will be meeting a new one in September. We will be getting a second opinion, and hopefully, no surgery will be needed, but we shall see.

Billy (Dad) got Monet a pool for the yard. His excused had always been that it would kill the grass, now that the grass is dead, there was no excuse. The grass started dying when Billy Boy got sick, and we didn't have the strength to rescue it all. We put all our energy into the family instead. Eventually I would like to do a desert landscape, but since we just finished all the construction inside, that will have to wait. Needless to say, Monet and I have been swimming daily.

Monet is starting Vacation Bible School next week, she is so excited! Then she goes to camp for a week. Yikes!

Billy is still riding his bike most mornings, and I'm still working on losing weight.

The end of the school year

It's hard to believe that it is June already! It seems like I have been filling out applications for the last six months. Insurance, services, programs, it never ends. Billy Boy has been doing pretty good. Tolerating his formula, regular bowel movements, and almost off Reglan. We've had some problems with the new supervisor nurse that comes once a month to flush his port a cath, so Dr. Kheradpour recommended that I start flushing his port. I had the training and starting next month, I will be his official port flusher. Billy is his official mickey changer.

Monet is almost done with 3rd grade and has maintained on the honor roll all year. She sang for the talent show at school, and is ready for her first solo week at Camp Ronald McDonald for Goodtimes! Wooo Hooo!

House back in order

Our floors are finally done! We had a huge mess out here for the last couple of weeks, seems like the whole house was torn apart. Dust was everywhere. Thank God it is getting back together nicely.

May 4th was Billy Boy's 12th Birthday, we had all the construction going on that day, but celebrated on Mother's day at my sister-in-laws. Mother's day is always bitter sweet for me, I kinda get a little down on that day. Glad to be a Mom, but probably don't feel the job is as rewarding as most. That being said, Monet (with Billy's help) tries her hardest to make it special. It's just one of those days that I miss Billy Boy alot, and feel life's unfairness.

Billy Boy is still sleeping pretty good. He is tolerating his food great too. He is having these little "episodes" at night that worry me a little, but I have to see his Neurologist to discuss them. Meanwhile, we are slowly taking him off Reglan, so far, so good. He is down to only twice a day. He just had his annual visit with a physical therapist and occupational therapist at CCS. He is tolerating standing up to 20 minutes at a time, every week we will increase it by 5 minutes until he can stand for 1 hour. We are also hanging out on the driveway and getting sun every day. We'll see what we will do once it is over 100, I don't think hanging out in the sun will be a great idea at that point.

I'm looking forward to Monet being out of school for summer vacation. We have some fun things planned for her.

Night time sleep

This last month has been horrible as far as sleeping. Two weeks ago Billy Boy (and I) slept maybe four hours all weekend. I asked his Rehabilitation Doctor if we could go up on Neurontin, since it seems like he is experiencing more pain and sensitivity in his leg with the dislocated hip. We finally got approval, and we are finally getting some sleep. In fact, last night is the first time in a long time that he was asleep by midnight, stayed asleep all night, and woke up by noon. In the past there have been times that he has slept 18-24 hours straight out of sheer exhaustion, but he sleeps all day and is back to being awake all night. This time he actuallly woke up at noon! I'm so excited, because when he sleeps all night, I only have to get up once or twice. I felt so well rested today and didn't even need a nap. I am praying this continues.

This last weekend we did our first family outing with Billy Boy that didn't involve a Doctors appointment. We took him to a Relay For Life cancer walk in Azusa Pacific University. He hung in there and we all had a good time (he even wore the brace most of the time.) We are also back to standing him up and he seems to be tolerating it once again.

Darn Body Splint!

Billy Boy still doesn't like that darn body splint. We love the way it stands him up straight as an arrow, but the days he stands he doesn't sleep that night. We'll have to talk to his Rehabilitation Specialist and see if she has any suggestions. Till then, there are many sleepless nights for me.

Monet and Billy attended a weekend Family Camp at Camp Ronald McDonald for Goodtimes. Monet will be going alone this summer and this was a nice time to get reaquainted with the camp (since we haven't been there in three years.) It helped ease her fears of being there for a week without us. She got to see the counselors and quickly made some new friends. Camp was an experience I will always treasure. (Billy Boy and I hung out here with the folks while they were gone.)

We still have to paint and put flooring on the rooms that were affected by the leak. Billy will paint this week or next, and the floors will be put in after they come in (two weeks.) I'm pretty excited because we are also re-doing the kitchen floor and Billy Boy's room while we have the guy out here.

Body splint

We picked up Billy Boy's body splint and it isn't going too well. He tolerates it while it is on him, but doesn't sleep a wink the nights he wears it. The worst part is that he is very uncomfortable and mad, so he doesn't let me sleep either. The best I can figure is that it causes direct pressure on the dislocated hip, bringing back the pain. I will have to talk to the orthotics place and see if there is a remedy for this, usually they tell me to put it on him anyway, but they don't have to suffer through sleepless nights.

Our plumbing sprung a leak, so we have had our insurance adjuster, a water remediation team, and a plumber out here. Today they are shutting off the water and re-routing the plumbing lines. There are dryers and dehumdifiers in the bathroom and laundry room. The good news is the insurance is paying for all of it, including the reroute to avoid future damage. Next we need to get our general contractor out here to put all back together again.

Is it March already?

Wow, it has been a long time since my last blog. Too long. We have been so busy with appointments, work, appointments, school, and more appointments. The formula we switched him to did the trick, his stomach woes are over (at least for now.) It's been so nice, we can even feed him in the wheelchair. That's not to say we don't have bad nights, because we still do, but they are definetly more tolerable. His chest infection is finally gone as well, it took three months to clear up, now he just has inflammation so they put him on an inhaler. We also found out he has scoliosis, common in wheelchair kids, so they made a body cast and we pick up that new orthotic on Friday. Pretty soon he's going to look like one giant cast, Lol! He is 5'5" and weighs 122 pounds , so growing is not an issue for him. Thursday he gets his next round of Botox (Thank God they have kept his pain under control.) Billy Boy is standing up for 35-40 minutes at a time, his ultimate goal is one hour. He'll get there, slowly but surely, he'll get there. We have also been taking him for walks in his wheelchair everyday. It's been nice for him, and for us as well, interacting with him more.

Monet's 9th birthday passed, and she celebrated by having a small 80's party. We turned the living room into a discotheque and the girls danced and had a good time. We are so proud of Monet for once again getting straight A's on her report card. She is also reading to Billy Boy 20 minutes a day. She loves spending time with her brother.

I am applying for a grant for Billy Boy to get Hyperbarics again, please pray that it gets approved, that would really help us out. I have so many applications to fill out for services he needs, I'm also praying I get all of them done in time. I've been feeling pretty positive lately, Billy Boy being content has a lot to do with it, but living and loving one day at a time helps too!

Standing up again

Billy Boy has been doing pretty good standing up again. He is up to 20 minutes per day. Some nights it bothers him more than others, but he is adjusting quite nicely. We are all enjoying his daily walks up and down the street in the sun. We don't have the smoothest streets, but he seems to enjoy them regardless. I know his nurse loves getting out of the room for a little while, and he gets his dose of Vitamin D. After a two year battle, the GI finally approved switching his formula. We are praying he tolerates this new one better.

Still sick

Billy Boy is still fighting off this chest infection, poor kid, takes forever for him to heal. We begun standing him up again, only 10 minutes at a time, but we'll increase as he can tolerate it. It seems to bring some discomfort to him, but nothing like before. His bones, as well as his digestive system, and heart need it. We are also exposing him to the sun for at least 15 minutes a day (hopefully it stops raining soon.) I would like to take him on some of my walks with me, so it would be nice if the weather lightened up and his chest got better.

Monet is doing great, school is good, she's getting exercise when she gets home and is very creative.

We are all hanging in there. Looking forward to Valentines, then Monet's birthday.

Just wanted to give a quick update. Billy Boy has been doing pretty good so far this year. since the Botox shots, he doesn't seem to be in pain from his hip anymore. He has also gotten quite vocal, making all kinds of new sounds. He is still getting over his chest infection, but we knew it would take a while. We will be starting that Neurodevelopmental program with him, hopefully in the next month.

Took Monet to the Orange County Market place and Balboa, had a really great time. Monet is jsut an awesome kid, with a compassionate, generous, mature soul. I thank God every day for every moment with my kids.

I'm still working out and loosing weight (slowly, but loosing.) Still expecting great things out of 2010!!

Happy New Year!

We wanted to wish all of you a blessed new year. We are hoping 2010 is a year of promise for Billy Boy and a blessed year for us all. Christmas ended up being pretty good. Monet was feeling better, and Billy Boys lungs sounded a whole lot better. We spent Christmas eve here with the folks and my sister in law (Judy), my niece, Jodie's family. Christmas morning my Mom and Dad got to enjoy the surprise in Monet's eyes as she opened her gifts from Santa. My brother and sister in law (Rene) joined us for a late breakfast, and later that night we took Billy Boy and Monet to Judy's (down the street.) All in all, we had a good time.

New Years, my other sister in law, Penny came in from Arizona. My nephew (Mike) and his daughter Corallyn came over with the rest of the family to celebrate. We all had a blast!

Monet had a fun, busy vacation in spite of being sick for a week. Billy Boy has been recuperating nicely (it will take him some time to heal.) Billy and I got some well deserved rest. Now it is time to get back to our normal schedules, exercise routines, and healthy eating habits.

We are expecting some good things out of 2010!