Merry Christmas

Sorry I haven't updated the blog for a few weeks. The kids have both been very sick and it's been quite hectic. My nurse went on vacation for a month, so I have been traning her replacement as well. Unfortunately, Billy Boy got a chest infection so he has been a lot harder to deal with than normal. Luckly, I think we are gettin it under control, so it didn't get as bad as it could have. Monet also got pretty sick with fevers, ear infections in both ears, sinus infection and throat infection. Today is the first day since last Monday that she hasn't run a fever.

Every agency we deal with (for Billy Boy) also thought it would be a good idea to come out now and do all our reviews?!

Despite everything we had a nice Christmas. I'm looking forward to a better New Year!

Happy Birthday

Happy Birthday Mom & to my angel in heaven Colton!

Usually this time of year is very depressing for me, Colton passed away on the 15th in 1996, Billy Boy went into cardiac arrest on the 16th in 2007. It is also a time of high anxiety for one special little girl. Therefore, we came to an agreement, I don't get depressed and she doesn't have to worry. It is just a day, my sadness comes and goes in periods when I miss my son the most. Christmas is usually one of those times, but it doesn't have to involve a particular day. I am instead trying to feel blessed that God has given us more time to spend with Billy Boy.

Billy Boy has been pretty good lately, fighting a little chest congestion, but otherwise, pretty good. We got his hip abductor pillow and the combination of that and the Botox has made him more comfortable. Unfortunately, my nurse is leaving for one month to go to Ghana, so I have a new nurse starting next Monday to fill in while she is away. We are going to miss her.

Monet sang in the choir for the Christmas production at East Hills Community Church and it was awesome! She and all the kids did an amazing job! She also was in Honor Roll for her first trimester at school. We were able to attend the Camp Ronald McDonald for Goodtimes (a wonderful camp for kids with cancer and their siblings) Christmas party and it was so much fun. I haven't been able to attend for three years, so it was nice to catch up with some of the other families. Monet will be attending camp by herself this summer.

Happy Thanksgiving

Happy Thanksgiving!!!! Well, I am thankful that we got a couple of good night's sleep there, because apparently, it's over. Unfortunately Billy Boy is having some rough mornings again. Luckly he restarts antibiotics next Friday.

I am thankful that Billy Boy is still here, that he (aside from the brain injury and all the stuff that goes with it) is relatively healthy, and that he has managed to stay out of the hospital for over a year and a half.

I am thankful for Monet, she is my saving grace! I am thankful that she, inspite of all this, is a very well grounded, intelligent, compassionate, understanding, beautiful, loving little girl.

I am thankful for my husband, for all his help, love and the laughter he brings to our home.

And I am thankful for our home, for our bills being paid, and for making it through these trying times. I am also thankful for all the people that have come, prayed for, or been a part of, our lives may God continue to bless us all.

Botox shots

Phew! It's over...finally. Billy Boy received Botox shots and the Doctor put him on Neurontin for nerve sensitivity. As soon as we started the Neurontin, there was an immediate change in him. What a difference! He is calm, smiling again, relaxed, and yes... sleeping at night. Thank God, it was rough for the last six months.

It's hard to express everything we go through, but I can say every feeling of missing the boy he was, talking to him , playing with him, every little thing we did with him is INTENSIFIED by a thousand when he is in constant pain. It is the most depressing, hopeless thing in the world.

At least this seems to be working and is giving us time to breath again!

Sorry I haven't updated in a while, we have been going through a rough patch. Billy Boy has been in a lot of pain and is having trouble sleeping nights. He is going in for Botox next Thursday and hopefully that will help.

Monet is doing great at school and has been practicing fro the Christmas production at church.

We are trying to hang in there mentally, physically, and spiritually.

We went to see the Orthopedic Specialist today, the options are not pleasant. I think for now we will deal with it with what we have. It's a very extensive surgery with no guarantee that it will help or relieve the pain. If we opted for surgery, they might have to remove the ball of the hip, or cut the femur bone and move the hip ball outward so it doesn't rub in the socket. I was like what? I don't think so! I think for now we will deal with it like it is. They are also going to give him lots of Botox in the inner thigh muscle to help it relax, and a pillow to keep his legs spread as much as possible.

We will see the other Orthopedic Specialist next Monday, but I don't see the outcome being much different. It will be interesting to hear what he has to say.

We took Monet to Sea World last Saturday and had a blast!

Approval

We finally got an approval fro Billy Boy to see an Orthopedic Specialist regarding his dislocated hip. the appointment is set for October 19, with a Loma Linda orthopedic. CCS wants their Orthopedic Specialist to see him on October 26 as well. We'll see how those go and keep everyone posted.

Nighttime sleeping

Billy Boy is finally sleeping nights!! It's been a long time since that has happened, but the last two nights he has fallen asleep before 2:00am. Praise be to God!!!

Feeling better

We are finally getting a little more sleep, and it is improving my attitude. The insurance is still slacking, but Billy Boy is more tolerable of the pain. The Motrin for the pain was causing an upset stomach which in turn was keeping him up at night. We took him off the Motrin and he seems to be doing better. He still needs turning at night, but at least we can go back to bed. He just got a flu shot, so last night he seemed to be in a little more pain than normal. As soon as we have his hip figured out, we plan on starting a new neurodevelopmental program.

No appointment

So far, we've heard nothing! The insurance is really slacking here. I keep calling and they can't ever seem to find the Doctors referral. I am frustrated and depressed, that's what an ailing kid and lack of sleep will do to you. Life sucks!!!

Update

We are almost done with all our yearly Doctors appointments. Everyone seems pretty happy with Billy Boy's over all health. The Rehabilitation Specialist is scheduling an appointment with the Orthopedic Specialist for next week. She seems to think something will be done about his dislocated hip, taking in two main factors; Billy Boy is in pain and Billy Boy (unlike most handicap children) was ambulatory two years ago and has developed hip sockets (like normal people.) Hopefully she is correct so he can enjoy the benefits he gains from standing up in his stander (without crying), but the Orthopedic Specialist will be the last to determine all that.

Monet has been busy. School is back in full swing. She is also rehearsing to be in the Christmas presentation at church. Cheerleading should be starting up soon too. We do our best to keep her busy.

Billy (Dad) is still mountain biking all around (and up and down some crazy hills) and I am back to walking again.

The waiting game

We are still waiting for the referral to see an Orthopedic Specialist. CCS said we should have it this week, but who knows. We have seen the Pulmonologist, Gastrointerologist, & Neurologist in the last week. We still need to see the Orthotics place this week, and the Rehabilitation Specialist next week. I have to meet with Social Security next week too. Next month we see his Oncologist & his regular Pediatrician, then we should be clear for at least six moths on one appointment and one year on all the others. Oh, I forgot the Orthopedic, hopefully that will happen soon as well.

I neeed to take Monet to see her pediatrician too. Billy Boy takes up so much time and energy, that I tend to put off the rest for later. I need to start working on us too. I wish I had more energy, I need to start working out again. Ugh!

Painful nights

Billy Boy is still in a lot of pain at night. The stander makes it so much worse, the physical therapist would like us to continue using it, but she isn't here at night and I can't watch him suffer. Nights have been awful for him, so I'm keeping optimistic that the Orthopedic specialist will want to do something about it. If that doesn't work, then I will involve Palliative care to make sure his pain needs are met. We are still waiting for a referal, so I'm praying it will take place soon and that he gets some relief.

This is the month of all his annual appointments, so we have two appointments per week for the next few weeks. This week we see the pulmonologist and gastrointerologist.

Work is going good so far.

Monet is back in school and doing well.

Disappointed

Well, I'm a little disappointed. We found out today that chances are, they will leave his dislocated hip alone. In other words, it will stay dislocated. They may provide us with braces so it doesn't get any worse, but unfortunately this is it. He used to love the stander, now it makes him cry. His legs were always fairly loose, now they are tight. Just doesn't seem fair, my poor baby has gone through so much pain and suffering in his short life. It doesn't make sense.

Calm

Ok, we are calming down. We don't want to place blame, we just want to get it fixed so we can move on. Tomorrow the Doctor is back and I should be able to find out a little more. Praying he (and we) can hang on till then.

Agghhhh!

We are so angry and frustrated over this whole thing. Billy Boy had shown so much progress until around April 20th (read older posts on the blog), when this whole nightmare started. He has been in pain on and off for four months now, while we tried to figure it out. I know it wasn't done on purpose by any means, I just wish it never happened or we noticed it sooner. It pains me to know he was suffering. We've notice lately he has pretty much lost his laughter and his smiles. We seem to be back to square one. We also have to wait all weekend before we can figure out what anyone is going to do!

Bad News

We took him for an X-ray today. Unfortunately, it revealed bad news for us. Billy Boy has a dislocated hip. We wont be able to speak to the Rehabilitaion Specialist until Monday, but it sounds like she will have to refer us to an Orthopedic Specialist. This could mean surgery for him, but we wont know for sure until we speak to the Specialists. Not what we wanted to hear, but at least we found the cause of his pain. Thank God I insisted on getting x-rays.

It's been awhile

Sorry it's taken me some time to update the blog. We have been trying to keep Monet busy, while setting up work for the new fiscal year, and dealing with Billy Boy. In the last two weeks, Billy Boy finally started sleeping again. He doesn't go to bed till 3:00 am, but he doesn't cry either, allowing us to get some much needed rest (both physically and emotionally.) His hip is experiencing spasticity, so we are taking him in for an x-ray on Tuesday. We think the baclofen pump will be the way to go, but as always it will take time to setup. All his annual appointments will be coming up in September, so we will once again, have a very busy month.

School starts next Monday and she's been looking forward to that, she really would like to see all her friends again, and it keeps her occupied.

Billy got the chance to go fishing again after two years. I missed him terribly (he really is a BIG help), although I made it throught the weekend with Kathys help. At least he brought back plenty of fish!

Pain

Guess I spoke too soon, almost as quickly as I posted the last blog, he had pain in his leg again. Last night was just awful, I was up with him till 2:00 in the morning, then up every 15-30 minutes till 4:00 trying to bring him some sort of relief from the pain he is feeling. In the next few months we will meet with his Rehabilitation Specialist to talk about surgically implanting a Baclofen pump.

To make matters a little worse, we took him to the dentist today, were they extracted two impacted baby teeth. When they put the bite block in his mouth, he began to scream. Poor kid, he goes through so much and it doesn't seem to get any better.

Relief at last

Ahhhhhh, he is finally feeling some relief. Slept from 1:00 till 8:00 this morning. First time in a long, long time. The Flagyl definetly helped his stomach. Now, it seems like the Botox is kickin in. We've also been using a heating pad on and off at night which has helped a little too. Today we are taking him in for blood work, and Friday he goes in to see the dentist.

I took Monet to the Yucaipa waterslides yesterday with Joe and Otto. We met Kathy, Karen, Ryan and Kaytlin there and had an awesome time! School is starting soon, so we are trying to make the best of the time we have left.

No sleep

So far, no good. He received Botox, but we probably wont see improvement till Tuesday. Every night he screams in pain. The rehab specialist said it could be growing pains, it could be contractures, we really don't know. If this doesn't correct it, we will see about putting in a Baclofen pump. I feel sorry for the poor kid!

He is on Flagyl till Monday, which makes him a little nauseous. He will do a regimen of five days on Flagyl every month, for the next five months. I'm praying that heals his stomach woes once and for all.

Monet just finished Vacation Bible School at East Hills Community Church, and had an awesome time! Next she has a cheerleading event at Scandia on Saturday.

Ouch!

He didn't sleep last night, but only cried once. Gave him an extra valium, and massaged his legs and arms twice before bedtime. One more night before botox and stomach antibiotics. It will get worse before it gets better, but hopefully by next week, he will feel some relief! We will need lots of prayers!

Like we don't have enough to worry about, our @#&*! Governor Arnold is reeming Billy Boy's services in every possible way. :(

Rough week

We are having a very rough week... and it keeps getting worse. Billy boy is in a lot of pain. His legs are severely cramping up. His stomach isn't doing any better either. The only light at the end of the tunnel is that Thursday he is getting Botox shots in his arms, hopefully they will address the legs as well. He is also starting Flagyl that day for his stomach. We are praying that these two things will bring him some relief by next week.

Universal with Joe

We took Joe to Universal Studios with us on Friday. He had never been and we thought it might be a nice experience for him. It was a hot day and the kids wanted to get wet, so we let them get soaked. In fact, we all got soaked. We all had such a great time. I missed Billy Boy being there, but I know he would have been happy that we took Joe with us.

I'm starting to be content for were we are with Billy Boy. Starting to understand that I am right were God wants me to be in order to live a life that is pleasing to him. It helps to stay focused when I get some sleep. Of course there are rough patches along the way, but I feel a sense of peace now.

Quakes game

Monet performed her cheerleading routine at the Quakes game in Rancho Cucamonga. It was extremely hot that day, but we all managed to have a good time regardless. We even took Billy Boy's best friend Joe with us.

Billy Boy is sleeping nights again. Praise God! He is in a lot of pain from the spasticity in his arms and legs. He will be getting Botox on the 30th, so till then I try and strech them out several times a day.

He is also having GI issues (no surprise), so his Doctor started him on Chlorophyll. We'll see if that helps. I think we need to change his formula.

Sleep deprevation

The lack of sleep is catching up with me. I am starting to get the blues. Billy Boy seems to be getting worse, not better. I think I'm going to have to talk to his GI doctor about switching his formula, because most of his problems are his digestion. He has tightness in his arm and he will be getting Botox shots at the end of the month. One of his legs is starting to get tight too, not sure if it's spasticity or growing pains, so we will address that with his Rehabilitation specialist as well.

Monet is still having a busy summer. Play dates, parties, movies, cheerleading, going down to HB, soon Vacation Bible school will start too. She seems to be really enjoying herself. Thanks to everyone that has scheduled a play date with her, those really help us out.

Also a special Thanks to Aunt Nilda for all the stuff you sent her (and me) from Florida, everything fit perfectly! ;)

This week

Hope everyone had a safe 4th of July. We enjoyed some movies and a great dinner at home. Billy Boy is still fighting his sleep cycles and will need his next set of Botox soon. We will visit his oncologist at the end of the week, haven't seen him in a while, actually haven't seen any Doctors in a while. Seems weird, but nice.

Monet will be cheering at a Quakes Baseball game next Sunday. She has been practicing for a while now, so that should be exciting. Billy (Dad) has been riding his mountain bike all over (he loves that bike...kinda weird.) Lol! I got back on track on my weightloss efforts, need to work on the exercising part, but it's so darn hot! It would be best to go first thing in the morning, but that's the time I can get some sleep.

Keeping busy

Everything is going pretty good. Trying to keep Monet busy for her summer vacation. Billy Boy is still keeping us up nights. Since we have tried everything, including keeping him awake for 27 hours, and he always goes right back to his same schedule... I give up! Maybe one day he will switch it around again, but only on his terms. It's starting to get hot, Hot, HOT here in the I.E., but otherwise we are all doing just fine.

Monet for hire

After a long night with Billy Boy, I took Monet to work today. She did a really good job filing property profiles, making new applications, sending contractor data sheets, and decorating our office. She was actually a lot of help, so if anyone needs help, she's available. :)

Family Outing

We went with Monet to Universal Studios, first time Billy and I have taken her together. We had a blast and she was so happy.

Billy Boy has been doing so much better at night too. I have been catching up on some much needed sleep. Unfortunately, I have been trying to wake him up since 11:00 this morning and haven't had much luck. Hopefully this doesn't switch him back again.

The End of School & Hyperbarics*

We have finished the school year and this session of hyperbarics. Monet received all A's in her report card once again. Hooray! To celebrate, Monet and I headed to Disneyland for her cousin, Blake's birthday. We had a great time and didn't get home till 11:30. Not bad for my first recreational park visit since Billy boy's accident. Billy even let me sleep in this morning. ;)

* Sorry Greg and anyone else who might have been confused, startled, or scared by the previous title.

Bad Night

Billy boy never went to sleep last night, around 4:00 in the morning, he bagan crying. Looks like he has a stomach virus or something. He was breathing hard, splotchy skin, he was very tight and his stomach seemed to be cramping. We'll see how he does today or we might have to take him to the Doctors.

Sleep schedule

Please pray that Billy boy's sleep schedule changes. He managed to sleep 4 straight hours one night and didn't sleep a wink that following day, however he only slept 2 hours the next night and has since slept all day. Aghhhh! Unlike a baby, there is nothing I can do to make him stay up when I want him to and make him sleep when I don't.

Also, although our company was awarded the contract, we are still waiting for approval from city council.

Great News!

Our prayers have been answered, our contract has been renewed. Thank God!!!

Rough Day

Monet got an award at school yesterday for Outstanding Academic Achivement for the third year in a row. (It was also crazy hair day at school so that made for an interesting picture.) We are very proud of all her hard work!

It's been a rough day for us today. Hyperbarics in the morning. Billy Boy has been swallowing air like crazy and it is hard to vent his stomach. The more bloated he gets, the more he swallows. Ahhhhh... so hard to deal with it until he finally passes out from exhaustion. When he wakes up it starts all over again. We need to change this crazy schedule.

P.s. I've added some pictures to the last few blogs so take a look.

Tired

Billy Boy woke up at 5:00pm yesterday and stayed awake till 2:00pm today. Needless to say, I am very tired. Hopefully tonight I can get some sleep.

Schedule

We are still battling with Billy boy 's schedule. Some nights it affects us more than others. We are still noticing slight improvements so it makes it easier to deal with. We should be done with this round of Hyperbarics by June 12th, Monet's last day of school, so that will be nice.

Monet participated at the talent show at school. She performed a short stand up comedy routine. She was very nervous, so I was very proud of her. It all came out fine, and she was proud as well. She's already thinking of ideas for next year.

We are still waiting to hear about our contract, so please keep that in prayer, and we will let you know how it turns out.

Have an awesome Memorial Day weekend!!!

Sleepless nights

Billy Boy has his nights and days all topsy turvy. He's had several sleepless nights, which means we've had restless nights too. Hopefully his sleep pattern will change soon. Hyperbarics may be contributing to that as well. We finish this round of treatments the second week of June. Maybe then we can slowly reverse him back to a more tolerable sleep schedule.

My dieting and exercise habits have suffered too. I need to be more committed.

Good news

Billy Boy laughed when I tickled him for the first time since his accident. Yeah!!!!!!

Mother's Day

Just wanted to wish everyone a very pleasant and relaxing Mother's Day!!! Hopefully I can get through this one without getting too emotional. It is times like these that I miss the kid he used to be the most.
I must say, he has come such a long way. It makes it easier to handle. He smiles quite a bit now (even when he is awake.) He hasn't cried in months. He loves his stander and joins us more in his wheelchair. He lets us know when he is uncomfortable. Things are definetly better than last year :)

Billy Boy's 11th Birthday

Today is Billy Boy's 11th Birthday. We survived another year...Thank God!!! Joe & his family came today to wish Billy Boy a happy birthday. Joe gave Billy a card that I would like to share with everyone:

Billy,
You and I go way back. We've shared a lot together, so many happy times and tears, so many thoughts and dreams. Many frienships come and go throughout one's life, and yet ours has always changed and gotten stronger. And I just wanted you to know, especially on your birthday, how much that means to me. How very glad I am to have such a good friend. I love you always.
Best Friends, Joe Munoz

As far as best friends go, Billy Boy is one lucky kid!

Prayer request

Please pray for us, our contract at work is up and we would like to get it again. Between that, hyperbarics, all the agencies, Billy Boy, the flu... we are at God's mercy!

Under pressure

I've been feeling a lot of pressure lately. Perhaps I'm a little down as well. Praying things will change. Trying to act positive so I can turn things around.

Congratulations Chris & Jodie

We had an eventful weekend. My niece, Jodie, got married. Friday was rehearsal. Saturday the wedding. Today was rounded off by opening the gifts. Monet made a lovely flower girl, once again. Jodie was a beautiful bride.

Thanks to Dorcas, Billy Boy stayed home Saturday, but was able to join us for the rehearsal dinner and opening the gifts.

We all had a great time. Congratulations and Best Wishes!! We love you guys!

Up all night

Billy Boy was annoyed all night and day. He didn't sleep a wink last night and only slept for a few hours today. His nurse was perplexed and thought he was still mad at us from yesterday. (We took him to CCS for his annual Physical Therapy assessment and she made him cry.) Shortly after I got home from work, we put him in the wheelchair, and he finally calmed down. Poor kid wanted up all along. He then stood in the stander for 45 minutes and sat in his chair for a couple more hours. He is definitely letting us know when he is uncomfortable. It just isn't always easy trying to figure out what is bugging him.

Easter Weekend

We had a pretty good weekend. Took Monet to church for Good Friday. Made it to church Easter Sunday as well. We ended up leaving a little early because we couldn't get Billy Boy to stop snoring. Normally he does that (awake) when he is annoyed. This time he was knocked out, so we decided to take him home. We still had a nice day. God has been so good to us. We were able to count our blessings and explain to Monet the sacrifice that Jesus did for us, but most importantly the ressurection.

We have noticed that lately Billy Boy is holding his pee in when he is sitting in the wheelchair. Don't know if that means anything, but it seems like there is more brain activity.

Joe's Birthday

Tuesday we celebrated Billy's best friends birthday. Joe and his family came over and we had cake and ice cream. Billy Boy is blessed by Joe's friendship!

Billy Boy is up to 30 minutes on the stander. He seems to really enjoy it, craking the occasional smile at us. It really made his Grandma and Grandpa very happy.

L.A. Philharmonic

Last Sunday I took Monet to the L.A. Philharmonic, courtesy of Chuck Richmond. We really enjoyed ourselves. Thank you so much!

Stander

We picked up the stander for Billy Boy. Yesterday was the first time he tried it out, a physical and occupational therapists were there to help us out along with the vendor. We stood him up and placed him in front of a mirror. (They told us the first time a patient stands up after being in bed for so long, they can pass out.) Billy Boy did really well. At the end of 15 minutes he turned a little pale so we lowered him. He hadn't eaten since early morning since we had Hyperbarics in the morning, so I wasn't too worried.

Today we stood him up again at home. This time he had eaten first. Once again, he did really well and even seems to enjoy it. This will be really good for him in so many ways. It will help with circulation, bone loss, his digestion, keeping his hips in place, balance, the list goes on and on. We are all so proud of him!

Botox shots

Phew! We have had a few rough days at work and we are praying we can get by them quickly. People can be difficult, but we have to deal with it as best as possible.

Billy Boy received Botox shots on Thursday. We did it in the office this time so he didn't have to be sedated. It actually worked out quite well.

We are still working out and loosing weight. It sheds off Billy faster, but I keep working on it. I'm looking forward to the weekend and spending time with Monet.

Weekend Getaway

Monet and Billy went on a weekend getaway, courtesy of his cousin Wayne & his wife Carol. They stayed at the Aguora Hills Renaissance Hotel for two nights and visited Universal Studios. They had a blast! Thank you!!!

I stayed home with Billy Boy and rented movies with my friend Kathy. It was nice to see some grown up movies and spend time with Kathy. She was a big help.

The weekend before, Billy took Monet fishing at Corona Lake, and I took her to the ballet.

13th Anniversary

Happy St. Patrick's Day!!! Today was my 13th Anniversary to the most wonderful man. Billy has taken care of us, made us laugh, and kept us grounded through these trying times. I am blessed to have him (and we all know he is blessed to have me!) Lol!!!

Progress

Billy Boy has shown so much progress. He hasn't cried for weeks. He smiles more often. He still has so much relaxation in his arms, it's quite remarkable since he hasn't had Botox shots since October.

We started hyperbarics again, can't wait to see the improvements that will happen next.

We feel really blessed and the Lords hand in all of this.

Monet's Party

Monet's birthday party was awesome! Everyone got along really well. She had a blast.

Fever is gone

Monet's fever is finally gone. Thank God!!! And it looks like Billy Boy didn't catch whatever she had.

Monet

My poor little Momo has been running low grade fevers for a week now. She has been out of school and misses it terribly. Just when we think she is better, the fever comes back again. Hopefully she will be well for her birthday Monday and her party next weekend. We are praying Billy Boy doesn't catch whatever this may be.

Weekend

Monet is finally starting softball. Billy will be the coach of her team. She is soo excited. She is planning on having a baseball theme birthday party in a couple of weeks. March 2nd she turns eight years old.

Billy Boy is doing so much better. He is once again content. He has been tolerating his wheelchair for hours (sometimes several times a day.) He will be starting Hyperbarics in a couple of weeks as well.

We were able to all go to church today as a family. It was wonderful!!! (Billy Boy slept through the whole thing and woke up right after the service :)

New nurse

We interviewed a new nurse today. She seemed very sweet, perceptive, and willing to work some Saturdays. We are very excited. She will be starting next Monday.

New nurse

We are trying out a new nurse tomorrow, please pray that this one works out.

Valentine Weekend

Billy Boy has been having much better nights (and days.) Monet's had an awesome weekend, playing board games, and hanging out with us. We all had a great Valentines, thanks to Billy (Dad) and his wonderful cooking. Oh, and because I worked out all week, I still managed to loose weight. :)

Insight

God gave me insight first, the nurse lasted about 15 minutes.

New nurse

Had another great night! Tomorrow I interview a new nurse, please pray that she is kind and a goood fit for our family. I have been praying to God to please hand pick the one he wants for us and to give me the insight to know when she isn't.

Night II

He didn't do as good tonight, like I said one to two.. good. One to two.. not so good. It was better than it had been, so I can't complain.

On a good note, we finally sold the truck today! One less thing to worry about.

Monet will start Little League tomorrow. (If they don't reschedule due to the weather.)

Sleep

Billy Boy slept through the night. First time since January 3rd. I had to get up at 5:00 and make sure he was o.k. It felt so good to get a good night's sleep. Hopefully he will sleep again tonight ;)

On the other hand we no longer have a nurse (again.) We'll see who the agency will send over next, or we might have to switch agencies. Please pray that we can find a good, dependable, loving nurse.

Still gassy

We are still having gas issues. We've tried every gas medicine available, but can't seem to find a cure. My last resort is to start him on the valium again. We really started to notice an increase in these problems when we started to ween him off. He has been off of valium for a couple of weeks, so we are going to restart the valium again and see if that helps. His comfort is a priority right now. I'm praying this will help. If not, we have a GI appointment on the 18th.

Nights

Ok, so we seem to have a pattern (it only took us one year to see it.) We have one or two good nights, then we get one or two bad nights. It sucks, I know, but that's the way it is. Billy Boy has gas and when he feels the pressure, he swallows even more air, adding to the problem. Therefore, we are now exhausted, physically and emotionally.

We had a much better night! Still a lot of gas, but no pain. Praise be to God!

Bad Night

We had one of the worst nights since this happened. Billy Boy screamed in pain till 2:30 am. Today we started Reglan, Billy Boy has been very relaxed. Hopefully this will be a more peaceful night!

January 27th

It's my Birthday, the big 4-0!

Took a trip to the neurologist, all is well, don't need to see him again for a whole year!

We are still experiencing gas problems. The poor kid can't pass gas or burp, so he is in major discomfort. Unfortunately it is worse at night. We are still waiting for the results of the biopsy, hopefully they can put him on a stronger anti-gas medicine as well.

We are experiencing some technical difficulties with the RN that over sees the LVN in my home. Luckly, I just spoke to the Director of the Nursing Agency and she is switching the RN. Otherwise, I might of had to switch agencies and I really like the nurse we have. Thank God that's taken care of.

Results

Billy Boy had the EGD today. They gave us pictures they took of the endoscopy. Everything looked fairly o.k., with the exception of his stomach being full of food. The last time he ate was 9:00 last night, so he is having trouble digesting his food (which is causing all the other symptoms.) We also found out he now weighs 115 lbs., he's gained 9 lbs. in four months. They decreased his formula intake and increased water, so hopefully that helps both things. If the biopsys come back normal, they will also start Reglan again. I know that will help because it helped him in the past.

They used a sedative called Ketamine, which they say gives normal kids hallucinations. When he came back, he was all tweeky with rapid heartbeat, so apparently it gave him hallucinations too. Hopefully of happier times.

Endoscopy

Billy boy is having a tough week, besides crying when laying or sitting on his back, he is having major gas and bloating, diarreah, bile in his residual, severe reflux, and stomach cramps. The Gastroenterologist saw something in Billy Boys upper GI. Due to that and the problems he is still experiencing, he has ordered an Esophagogastroduodenoscopy (or EGD), which will take place Friday at 7:00am. Thank God! Hopefully we can figure out what is going on with this kid once and for all.

GI Problems

Still experiencing some stomach problems. We neeed to figure out what is going on with this poor kid. Unfortunately most of his problems are at night, so we must go on with very little sleep:( Help!

One awesome thing...my prayers have been answered, the nurse that we love has agreed to be my full time nurse! Yeahhhhhh!

Getting better

It's been a much better week. Billy Boy is feeling better little by little. He is being fed with the pump during the night, which seems to be helping his reflux, gas, or slow digestion problems (what ever they may be.)

We are also adjusting to nursing, and taking advantage of it. Our favorite nurse will be coming three days a week now, so we only need to find one for the other two.

Billy and I are trying to carry on with the rest of our lives (which is so hard to do.) We tend to just want to focus on Billy Boy, but we have other duties that must be tended to as well. We have been exercising, eating healthy again, spending time with Monet, and working.

A few doctors appointments are coming up, so hopefully all goes well there.

Back on track

Although he is not sleeping quite as soundly as Friday night. We are still seeing improvements. Billy Boy is still getting over that chest infection, so little by little, he's getting better.

Monet went back to school today, we are back at work. Everything is back to normal.

Billy (Dad) and I are back to eating healthy and exercising, we let it go for a year (for obvious reasons), but now we are back. Pray that we are able to achive our goals (especially me.)

Prayers

Our prayers are being answered, Billy Boy had the best night he has had in a long time (especially on full feeds.) We slept in till 8:00 (even Billy Dad.) Thank God!

Upper GI

Nissen is still in place, so we don't know what is going on. Will talk to his GI on Monday and see what we try next. Seems to be doing better (go figure.) We'll see how it goes. Please keep him in prayer!

ER

We spent 6 hours in the ER, a good portion of those with Billy Boy crying. Unfortunately, they were unable to do an upper GI. However, we did get one scheduled for Friday at 10:30 (it had been scheduled for January 12th.) Hopefully, we will find out why he is not tolerating any food and has such severe reflux. We beleive his Nissen slipped, but we shall find out soon. Meanwhile, we are trying to feed him very slowly, but he is still refluxing and moaning a lot. Poor kid!

By the way: Happy New Year!!! Let's pray this is a better year for us all.