The Weekend

We had a pretty calm weekend. Billy is doing great with his splints. We started standing him up for one minute at a time so that he start bearing weight. We don't want him to loose bone density. He kind of freaked out at first, but he quickly adjusted and doesn't seem to mind. He started moving his feet and legs somewhat (while sneezing or yawning, and sometimes when I tickle his foot.) I really liked the Hyperbaric Oxygen Treatment place in San Bernardino, but it is pricey ($150 a treatment and he needs 40 to begin with), so I am checking a place in Fountain Valley and Irvine (a further drive, but if it costs less, it might be worth it.)

Saturday, Billy and Monet went to Wild Animal Park in San Diego with his sister (Judy), niece (Jodie) and her son (Blake). They had a nice time, but Billy had to try and deal with his feelings of not having Billy Boy there, while trying to have fun with Monet. It's hard to deal with the emotional side of all this. Sometimes it's easier to be at home with him, that way you don't have time to let those feelings creep up on you, although it's not fair to Monet. It's tough, but we have to deal with it for now. We try to keep positve, because we know God has something amazing in store for us!

Still pretty good

Billy had the ultrasound done. Everything looks fine. His intestinal problem was the boulis feedings. Now that he is on the pump most of the crying has stopped. He's a little constipated, but we are going the old fashion way on this one... prune juice via G-tube.

Billy's splint are working awesome (thanks to the Botox shots!) Monday he gets his wrist splints and possibly his leg splints will be ready too. We are also working on his range of motion exercises.

I spoke to a Hyperbaric Oxygen Chamber place near me and so far I am pleased with the personel. I look forward to working with them and hopefully seeing a positive result. At this point anything is positive (besides no one dies from too much oxygen, yet plenty of people die from lack of it.)

I wanted to thank a group of friends "the Burgers" who got together with a skateboard company Pocket Pistols and made Billy Boy (Rebar) his own board. They then had a bunch of proskaters and their friends sign it. Pretty awesome... Billy Boy would of loved it! Hopefully one day he will be able to see it and enjoy it too.

A visit from Joe

We've had two days of very little crying. I guess the drip, Botox shots, Reglan and valium combination has finally made a difference. Yesterday he had the splints on for hours without complaining. Billy had a visit from his best friend Joe (Joe was born with a deformity in his ear, and they became best friends because they were different. The last day Billy was in school, he pulled Joe aside and told him that no matter what happened to him they would always be friends.) It was good for both of them to meet again.

For those of you that don't know, Billy had been telling us that he would die after he finished chemo. He spoke to his oncologist about it, and he reassured him that he was low risk. We had him in counseling for it, his biggest fear was how I would react if something happened. Two days before this incident Billy asked me how would he know when he got to heaven. I explained that Jesus would greet him at the door and he would feel the same comfort he feels around his Dad and I. I also mentioned that Jesus was the best cuddler, and that made him a smile. The night before, Billy Boy asked that I sleep with him in case he died that night. The next morning at 10:00, his heart stopped.

I am still researching the Hyperbaric Oxygen chambers, and hoping something can bring a smile to Billy Boy's face.

A busy week

Wow, we had a busy week. Doctors appointments like crazy. We are finally seeing some improvement. The botox shots have kicked in, we received his elbows splints just in time, and he is tolerating them for about one and a half hours at a ninety degree angle. We are still waiting for his wrist splints and his leg splints. He is doing better on a twenty hour feeding drip and they added Reglan for the reflux. His neurologist also wants him on a constant low dose of Valium for the spasticity (which apparently can attack the GI organs as well.) His breathing is still chronic (noisy), but we can only address so much at once.

On the other hand, I am feeling a bit down lately. I miss my boy. We were so close... I would do anything to have him back, talking to me, making me laugh, cuddling with me. At least a smile, a simple smile would make my day. Pray for a smile for me, please!

After Botox

Well, we made it through the weekend. We had a rough start... Billy had a hard time after the Botox shots. He had a tough time swallowing and breathing, he almost seemed to aspirate. He cried a lot too, which didn't help. He had major reflux, so we took it upon ourselves to stop the drip feedings at night. Our executive decision paid off, we started feedings as soon as Billy (Dad) woke up and shut them off a little after midnight, and we all got some sleep.

Today, he did much better. We are already seeing some relaxation in the arms, so I took advantage and did some range of motion in his arms a couple of times today. He didn't cry too much and we were able to move him into the recliner in the living room for a few hours. He even coughed a few times on his own again.

Monet had a good weekend, on Friday she had a girls night out with my friend Tracy and her daughter. They went to the Elephant Bar and to the movies. Saturday, she spent some time with her Uncle Ron (while Aunt Rene helped me with Billy Boy), then I took her to a classmates cowgirl birthday party. Sunday we played bubbles, made some puppets, and visited with Pete and Leisa (Thanks!)

We have five appointments coming up this week, so I will keep everyone posted.

Botox shots

Billy was able to receive the Botox shots yesterday morning! Praise God!!! We should see improvement within the next five days, however the tendon in his arms has already shortened and the most he will relax is to a ninety degree angle... but we'll take it. He was a little pale, so we kept him on oxygen till this morning.

On the other hand, he has been having Gastrointestinal problems. We received a pump today and we'll be trying 20 hour drip feedings for the next six days to see if he digests the food a little better. If the crying doesn't stop, he may need to be hospitalized to see what is going on. If it does help, then eventually, we will be switched to 12 hour drip nightly pump feedings. He also has thrown up a few times and with the risk of aspiration, he will require a nissin fundiplication so that the food can not come back up. I think at this point, that might really benefit him.

We can only take things one day at a time, one step at a time, and pray that it will all get better... what else can we do?

Improvement?

After a rough weekend, I called Palliative care and they will meet us at our next Dr.'s appointment, from there on they will be making sure that Billy Boy's pain is handled in a more timely manner (apparantly pain is their department.) For those of you who don't know, Palliative care is like Hospice, but for the living.

Pheww! The last two days have been better... knock on wood. We finally received the new formula so hopefully it will make a difference. We also received a better fitting vest for his percussion machine and he has coughed quite a bit more (which helps clear out his lungs.) Keep him in prayer so he can remain healthy enough to get those much anticipated Botox shots.

Saturday

Ok, so I spoke too soon. Today was pretty bad. Billy Boy cried all day and half the night. I am emotionally drained again. I can only hope tomorrow will be a better day.

Appointments

We have had a busy week. It started off with an appointment to the cardiologist (all is well, still can't figure out what happened.) Next we visited Johnsons Orthopedic and he got fitted for splints for his arms. If all goes according to plan, he will get the Botox shots next week, they take approximately 5 days to start feeling the effects, and in that time the splints will be ready so that he can start wearing them... that is if it all works out.

We also visited CCS and he got fitted for his custom wheelchair (it will take anywhere from two to three months to make.) Billy (Dad) was excited because we got to choose colors, etc. We also got an evaluation from the Occupational and Physical Therapists from CCS (the experts.) These are the therapist that will follow him till he is 21 years old. In a couple of weeks they will come with the vendor to assess the house and see what other equipment is needed. Yay!!!! Billy Boy will finally get to take a shower (not just a sponge bath, which by the way, THANK GOD for Rachelle and Mom who come and help Billy and I with bath times once a week.)

Monet received her report card today... all A's. "What did you expect?" her teacher says, "She's perfect!" Monet (and us) have been handling the situation we are in a little better this week. She reads to him, watches TV with him, she even took a nap with him. It's been a lot better (emotionally) this week (I no longer cry every night), although I am physically drained. Hopefully we will figure out Billy's pain soon and we wont have to listen to his cries of agony anymore. Poor baby!

Monet's Birthday

We celebrated Monet's 7th birthday yesterday with the family. It was nice to feel normal for a day. She had a great time and Billy Boy was content. The noise of a family gathering seems to soothe him.

Today it was back to reality and Billy's crying. We went to his cardiology appointment today. Nothing new to report, everything seems fine for now. He will stay on a very low dose of the arrhythmia medicine. I have to say I love all his Doctors (so far) and the care he receives at Loma Linda (our home away from home.)

The GI Team

We went to see the GI team yesterday. (What a humbling experience.) We met with a dietician, the GI doctor, and a social worker. Billy Boy cried almost the entire three hours we were there. They changed his formula, added Gas X, scheduled an abdomen ultrasound (they want to take a look at his pancreas and gall bladder to make sure he isn't passing a stone or dumping.) He may need a full body bone scan to make sure there aren't any broken bones or dislocated joints from the spasticity. We are all trying to figure out why he is crying so much, hopefully we will get an answer. His botox shots have been rescheduled for March 13 (pray that he will be well by then.) We have a series of appointments for next week. I will keep everyone posted.