Good Friday

March is almost over... hopefully all these colds, flu, allergies leave with it.  This season has hit us all (even my nurses), but I've gotten it twice and this last one was worse.  All this last week I have been on recovery mode, I haven't worked out since over a week ago.  I feel much better now, so I plan on starting back up Monday.  This week we also went to orientation at Monet's new Jr. High.  The school is beautiful and I think that it got her excited about attending there.  We also went to open house at her elementary and got a good look at her extraordinary work.  Monet's projects really stand out and she does the work all on her own.  The girl is crafty!!

Billy boy has been great. He is enjoying his reading sessions with his teacher outside, thanks to the great weather we've been having.  He's even turned his head a few times to look at the nurses.  Luckily, he didn't get whatever cooties I had last. I did wear masks to bed and in his room so I wouldn't spread the germs.

Billy and I celebrated our 17th anniversary! Wow, where has the time gone?

Next week Monet is off for spring break so hopefully we have a few things in store for her.  The following week, Billy Boy has a couple of Drs. appointments.  Till then He is Risen! Happy Easter!!!

Is it March 2013 already?

Wow, it's been a really, really long time since my last post. So much has happened where to begin... Well, the holidays were very nice this year.  In fact everything since Billy Boys spinal rod fusion has been much nicer. The last year has been his first pain free year since his cardiac arrest.  It's the first year that we are able to do things guilt free (for the most part that is.) We have six nurses helping us out at different times and a great agency that has been working with us.  Monet and I were both in the Christmas production at our church, then kept busy crafting and baking through the holidays. Unfortunately, one of my best friends (Laling) passed away during the holidays. I've known her since we moved to Cali, she was my maid of honor, my great friend and I miss her dearly.

In January we took a leadership class at our church where Monet spearheaded a ministry to collect books for the Mead Valley recreation center.  The ministry is collecting over 1,000 books until May, so far so good.  Monet has received straight A's on her report card and is working very hard on various projects. She turned twelve at the begining of the month. Pretty soon we start meeting with the middle school for her transition there.

Billy Boy is hanging tough. Ever since his surgery he smiles and laughs more often.  He is now able to sit for three to four hours at a time. We bought him a ramp so he could once again join us in the living room for family time. (It was hard to get his new wheel chair down that step since it's so heavy.) His appointments have been going good since most our annual or biannual now. We still see pain management once a month to fill his pump.

Billy and I are still working our small business in Azusa, while we take care of the kid.  It's hard because all our nurses got sick, or needed vacations, both kids got sick. If it's not one thing, it's another, but such is life. I thank God every day for the little work we have and for the time to take care of Billy Boy. It is all in his hands and in his perfect plan.

Billy is still riding his bike whenever possible and fishing here and there.  I am still trying to shed some unwanted pounds, and even though I weight train three to four times a week, I've been stuck in a plateau for the last year. It's frustrating, but I wont give up! I am once again trying to raise funds for Camp Ronald McDonald for Goodtimes, a camp that helps children with cancer and their siblings. Both of my kids have enjoyed participating there and the camp has touched our lives in ways that I could never explain. If you have a chance to donate please do, here is the link.. http://www.walkforkids.org/faf/donorReg/donorPledge.asp?ievent=1052015&lis=1&kntae1052015=DFE83C980D30469E8BA53FEBDEAAF7D2&supId=324304117

The Ups and Downs

Well, Septmeber and October have held exciting things for Billy Boy.  He is enrolled in home schooling and started out with one teacher, but after she received a full time assignment, he ended up with another.  His old teacher (from when he had leukemia), is his teacher once again.  Mr. White is a great teacher and is trying to stimulate Billy Boy's brain in various ways.  We are really excited about having him.  Unfortunately, the district is telling us this is only temporary until he has an IEP.  We'll see about that!!

At the end of September, we had a scare with Billy Boy.  He started acting funny.. twitchy, uncomfortable, hot, sweaty, didn't want to be touched, couldn't sleep, and couldn't urinate.  He was fine one hour, the next he was acting weird.  I stayed up most of the night with him and in the morning we took him to the pain management specialist to check out his pump.  They interogated it and said all looked fine, which was weird to me because we've never seen him like this.  Again he was up all night, with the same symptoms but they were getting worse, so the next day we took him to the pediatrician.  He ran all kinds of tests on him to make sure there wasn't a bladder or ear infection, perhaps something we couldn't see.  The resident said he was displaying all the classic symptoms of withdrawal, but we hadn't taken him off anything.  We noticed a small seizure in the office, but couldn't be 100% sure if that's what it was. That evening Billy Boy had another seizure, this time I filmed it, it lasted about 15-20 minutes.  I decided to give him Neurontin which brought him some relief.  Next morning we took him back to pain management and showed her the video.  She confirmed the seizure, but didn't know why, that is until they checked to see how much Baclofen was in the pump and it was EMPTY!!!  The poor kid was having Baclofen withdrawls (which can be fatal.)  Now they are keeping their eye on the pump, but we believe it was human error.   It was scary and we don't want to go through anything like that again!!! On a good note, the Orthopedic Surgeon said Billy boy's spinal rod fusion looks great and is out of the danger zone.  We wont have to see him for another six months.

Halloween was fun for us all this year.  We went to a few parties and events so Monet got to dress up several times.  She was a scary clown. Billy Boy and his nurse were ninja turtles.  I got to go with Monet's class to her fireld trip at the San Diego Safari, we had a really good time there too.  Monet and I have been busy at church practicing for the Christmas production.  This year we both have parts as well as singing in the choir. It's hard to believe the holidays are upon us and this year is almost over... where does the time go?

It's been so long since my last blog, my apologies, but that means things are going well for the most part.  The issue with Social Security was never resolved, but they stopped requesting me to pay them back.  I did get a phone call that it was resolved but I guess I will never get it in writting.  People there don't ever call back either, I must have left them at least 10 messages and they never returned one call.  Weird!

Unfortunately, we lost another nurse and have two more to replace him. We know have five nurses, but it hasn't been consistent.  Hopefully next month we will all have it down.  Meanwhile, Billy Boy is doing great! His pain is pretty much gone and he is generally comfortable.  Thank God for that spinal rod fusion and the Baclofen pump!!!  We are in the works of getting a home teacher to come read to him a few hours a week.  I can't believe we are finally to a point where other things matter besides his pain.

Monet had a great summer; camp, the R ranch in the sequioas, sleep overs, movies, Disneyland, Sea World the beach and lots of crafting.  She started the sixth grade and is doing great.  We will soon be starting rehearsals for the Christmas production at our church.

Our work is still hanging on Thank God, but who knows for how much longer.  I would like to go back to school, but there are things I would have to fix here first to ensure Billy can get him up by himself.  One day... until then, I feel very blessed for how far we've come.

the case

A supervisor from social security contacted me, she looked into the case and aggreed that a mistake had been made.  Another supervisor followed up with a few questions because the system wasn't letting them enter the information.  I received a letter saying the case was being reviewed and some changes were being made, other follow up letters will be coming regarding the waiver and reconsideration.  I'm still waiting for those, but in the meantime, things seem to be moving in the right direction.

Post surgery

Went to the post op for the Orthopedic Surgeon, staples were removed.  His curvature went from 95% to somewhere between 10-5%. He started peeing on his own about a week ago. He's tolerating sitting for longer periods now (about three hours at a time.) He's using his passey muir for that long as well.  Things are really looking up for him.  Praise God!!

This last couple of weeks we've had our share of struggles, but when isn't that the case with us.  One of our treasured nurses has decided to take a job else where. He needed to do that to support his growing family, but of course he will be dearly missed.  Luckly, we found two nurses to take over his shift. One we already know and love, the other I met this week and knew she was a fit for our family the minute I met her.

Unfortunately, even though I received a call from my CR at Social Security telling me that my overpayment had been waived and I would no longer owe them anything, I received a letter stating that they will start collecting on the $15,000 plus that I owe them??? The amount went up!?! They also since have withheld Billy Boy's monthly check (which the rule for SSI receipients is to withhold no more than 10% unless you have written consent.)  I have called numerous times and my calls go unreturned.  Luckly my friend that used to work for SS returns from her vacation tomorrow night and hopefully we will file a complaint this week (forcing a Supervisor to take a look at the case.)  I also have the message that the CR recorded, so I have proof it was waived.  I think there's been a mistake, but it's still a headache I have to fix.

This week we adopted a new dog from the pound for Monet. Charlie is a sweet, black two year old chiweenie. Lucy and her get along as well.  Also, we celebrated Billy Boy's 14th birthday.  He's been through so much in his short life, every year we have with him is a blessing we don't take for granted!

Spinal Rod Fusion is done!

Well surgery went better than expected. He was in surgery for about six hours. Towards the end, he lost a lot of blood (his whole body's supply's worth.) About 50% of that is recycled back and of course he needed a few transfusions as well as platelets. His blood pressure dropped as a result. When we were finally able to see him at 7:30pm, he was swollen, but not as bad as we had imagined and he was awake. Since his blood pressure dropped and he was on medicine to bring it back up, they held off on pain medicine (especially in his epidural.) The next morning, he didn't look like he was in any discomfort, so I told them to hold off on pain meds in order to possibly get him off the blood pressure medicine. It worked and he was off it that day. He was also off the vent and back to room air. The next day he still didn't need pain meds and was fairly relaxed. They talked about sending him home Friday. The surgeon decided not to because he had lost so much blood, so he kept him in the hospital until Saturday.
Saturday afternoon we were discharged. No pain meds!! Unbelievable! I guess the pain he felt before must have been way worse than we thought. The only hiccup in the whole thing is he has urinary retention (very common after surgeries.) I learned and have been catheterizing him at home, but supplies are limited, so tomorrow I'm going to need to make a couple of phone calls. Other than that, things couldn't have gone better.
I truly feel that the Lord had his hand in this all. Tying up all kinds of loose ends. Even Social Security left a message saying that my case had been handled and I didn't owe any back pay. (I wont be completely satisfied until I have the paper in my hand, but I know God has that handled as well.) God has blessed us this week, of that I am certain!!!