Here was our schedule:
Monday Aug 11 -
*no food or drink after midnight Sunday for labwork when we can work it in between appointments
*8AM arrive at pedi endocrinologist for 8:30 appt. (got out about 10am)10AM go to admitting then down to have EMG/Nerve Conduction studies done(got out about 12:10pm)
went to lab 12:15pm for bloodwork and urine sample. They could not get blood from Joshua's vein, so sent us to another lab. We were there from 1:10 until 4:00, before they finally got the blood from an arterial stick. It was LOTS of blood.
4:15pm arrived at pedi pulmonary clinic for what was supposed to be a 1:30pm appointment (they ordered the bloodwork, so they would have to understand) (got out about 5:45pm)we had taken a motel shuttle over and had to wait for them to be able to pick us up, which should have been shortly after 6:30. But the driver got confused about where to pick us up, and missed us. Finally, around 7:30, one of the doctors who was coming out of the building, heading for her car, noticed us still sitting there (still not having had a chance to eat all day long) and took pity on us. She drove us back to our motel to pick up our vehicle so we could go to dinner.
Tuesday, Aug 12 -
we got to eat some breakfast before heading to the hospital today!
7am arrive at admitting then go up to sleep lab for daytime ventilator titration studies (we were there until about 4pm)went to eat quickly and go back to motel to grab our overnight stuff
6:30pm arrive back at sleep lab for overnight studies
Wednesday, Aug 13 -
7:30am finish up at the sleep lab and make our way back to admitting then down to have spinal tap (finished that around 9AM, but had to lay flat for an hour afterwards in recovery)
they took us to the MRI lab for an 11am MRI.
After waiting there about 30-45 minutes, they got Joshua in the scanner. He was hoping to avoid having this done and was having trouble with the small spaces, being off the vent and getting really sweatty. He just could not sit still enough for the scan. They decided he needed to have general anesthesia for the MRI, but could not do that without doctor's orders. They would have to reschedule this for some later date. (got out of there around 12:20pm)
12:30pm go up to pediatric imaging for a chest x-ray (got out of there around 1:15pm)
1:30pm go take paperwork to pediatric pulmonary clinic to let them know about the MRI troubles. Had to wait around there for them to figure out what to do and to try and get it rescheduled - but to no avail. They finally let us go at nearly 4pm.
4pm Josh and I stop in the hospital cafeteria to eat as we head for the parking garage to get our van to leave
7pm Josh and I went to the movies to see Wall E
Thursday, Aug 14 -
9am arrive at pedi cardiologist for 9:30am appt. (long wait as they were busy - then Josh had an EKG and an echo but they decided against the holter monitor because his heart looked just fine) got out of there around 12:45
1pm arrive at pedi neurologist for 1:30pm appt. (long discussion with neurologist - the most informative of everything so far because they are looking for the cause of Joshua's disorder which has been unknown until now). got out of there at about 4pm
4pm Josh and I find a deli in the same building and eat on the way to the parking garage
5-7pm Josh and I finally find time to check out the park near the hospital and ride the mini-train, watch people fishing and we even got to swingthen we went back to the hotel, went swimming and ordered pizza for a late dinner
Friday, Aug 15 -
we got up, had breakfast, and headed for home! got home about 1pm
RESULTS
We were told that some of the blood tests would take up to a month to come back, but so far everything looked normal except for his sodium which was 153 (a little high - but pretty good compared to some of his results the past couple of years). His pulmonary function tests were great. His heart looked fine. His neurological exam looked good. And his sleep studies were improved from when we went to Chicago Sept 2006. His CO2 still climbs into the 60s and low 70s when he sleeps off the vent. But he continued to breathe - just shallowly. The neurologist thinks some of the times when Joshua was non-responsive when he was younger were due to seizures. She wants to get a 24 hour EEG on him and to see the previous MRI scans and EEG reports from the hospitals back in 2005. She said we would likely return in a month or so to have the next tests. She said there was a baby whose father is a doctor. The baby was having seizures that made him stop breathing - very unusual. But the father would have to give CPR to get the baby back after the seizures. They finally found a small area in the brain that was causing the seizures and removed it, now he is normal. She thought perhaps that or something like it might have caused Joshua's disorder/symptoms. And before we decide on one surgical procedure (pacers) we should rule out the other things. That sounded great to me. It would be wonderful if they could do some other procedure that would cure Josh and he would have no more need for a trach, vent, etc. But if it turns out, that they don't find the cause, they will still go ahead with the pacers and he would at least get some freedom from the ventilator more than he has now. So, we wait for them to contact us back with some results and dates for more testing.I'll post another blog soon with some of the pictures we took while we were in Houston!
Friday, August 08, 2008Survived California - Next is Houston
Traveling around with a ventilator, monitors, trach stuff and all sorts of medicines is hectic no matter which way you go. But by airplane has to be one of the worst.
UCLA had booked us a non-stop flight to and from California. But, I needed to mak
e sure the airline was going to allow us to come on with all of Joshua's medical equipment, so I gave them a call about a week or so before the trip. And sure enough, they would not be able to accommodate us on our already booked flights. Instead, they needed to change us to flights that had layovers in Denver. I'm not really sure what the difference to them is – but the difference for us is obvious. It have to get to the airport earlier, it takes us longer to get where we're going with more chances for missed flights and oh, we have to unpack and repack Joshua's ventilator cart full of supplies for each flight.
Le
t me tell you, flight attendants and pilots get really freaked out by someone traveling on a plane who needs a ventilator and monitors. And all those items make for some real fun when going through the security checks. In Los Angeles, they had us in two different lines to check in one piece of luggage because they "might" need us to fill out some more papers for Joshua's medical stuff. They didn't – because I had already gotten clearance for that when I made the call before. That call took about an hour and a half. But it didn't mean we got to skip the extra lines. Also at LAX, one of the swabs from Joshua's cart made their explosives detectingmachines go off – that REALLY freaked everybody out. They re-swabbed everything and brought in extra people to double check everything. Of course, there was nothing to find and they finally gave us the all-clear.
We had all kinds of excitement in Los Angeles. First, Josh decided at the airport, that he needed his trach changed. So, there I stood with him outside the men's room at the airport, removing one trach from his neck and replacing it with another. Talk about one of the least sanitary places to perform that task!
The doctor's wife picked us up from the airport. She was taking us to our hotel, when I asked her if she could stop along the way for us to get a bite to eat. We had not eaten since like 6AM and this was 2PM Los Angeles time – which would be 4PM San Antonio time – and we were starved!
She chose a ni
ce little diner that served "famous fried chicken." Josh and I thought that sounded great and ordered a plate each. The doc's wife had us go inside to eat at the diner instead of taking it to go. We were doing good until some patron all of a sudden got very upset over something and began shouting expletives at the top of his lungs. They owner or manager quickly escorted the man out of the place into the parking lot. After we murmured amongst ourselves about what his problem might have been, the doc's wife announced to us "Welcome to LA."
Outside again on the way to the car, I noticed the beautiful flowers and plants as well as the big hills behind the diner. And the temperature was much nicer here – about 80 degrees compared to our 100 degree days in San Antonio recently. It was beautiful here – nature wise.
We visited all the way to the hotel, commenting on the very few areas of the city we were familiar with – having never been to California – much less Los Angeles before.
As we got near our hotel, the doc's wife pointed out where the nearby pharmacy and 
grocery store were located, oh and there is Westwood Village. Apparently that is a very well-known area for movie stars and the sort to go shop and watch movies – even for the big premiers you see stories about on TV. WOW.
I had no idea we'd be walking distance from all of 
that! We were also walking distance from the UCLA campus.
Come to find out, a very famous (albeit unknown to us at the time) hotel – the W Hotel – was just across the street from our hotel. We saw so many limos and taxi's of every 
kind coming and going from that place. We just couldn't believe it! We heard that there was a big movie premiere held about an hour after we left our hotel with an after-party held at that very same W Hotel...
We never noticed any famous actors or the like, but we did decide to go to see the new Batman movie inside the Village Theater where the movie premier was to be held the next day.
It was a very LARGE movie theater – seating like 1,400 people with gold trim and curtains that come 
down over the movie screen after the previews air.
Across the street from our theater was the Bruin Theater. It was "closed due to a private screening" the night we went to Batman. They were actually showing the yet-to-be released "Tropic Thunder" starring Ben Stiller and 
Robert Downey, Jr. I thought it would be way-cool to happen to see one or both of them arriving at their movie – but it didn't happen. Oh well.
Of course, we were in Los Angeles for more than just fun. Joshua spent a very big part of Saturday, August 2nd being scanned in a large MRI machine. He had more scans than I could keep count of. Some of those scans included the bed Joshua was lying on shaking and shaking. I think it scared Joshua and he was VERY ready to get out – long before they were done. But he was so tough. He stayed pretty still and got through all the scans. It took around 3 hours to do all the MRI's. Then, we had all sorts of surveys and questionnaires to fill out. We were on the campus of UCLA for everything from about 11AM until 4:30PM. But, then we were done – phew!
But the medical stuff is far from over for the summer. We came back to San Antonio and Joshua had toget some bloodwork done here. He also saw his pediatric pulmonologist and did somepulmonary function testing (PFT's). That took all afternoon on Thursday. And I spent most of the week phoning, faxing and emailing in preparation of our trip to see several specialists in Houston next week (August 11-15). But we finally got it all scheduled and approved for Medicaid Transportation to help cover the travel expenses.
Here is our schedule for the Houston trip:
Sunday, August 10th afternoon - Joshua and I drive from our home to Houston night – spend the night at a Howard Johnson Hotel (Joshua can have nothing to eat or drink after midnight due to some testing Monday morning)
Monday, August 11th 8:30am Pediatric Endocrinology appt10:00am EMG/Nerve Conduction studies 1:00pm Pediatric Pulmonary appt(If there is time to draw labs between the Endocrine appointment and the EMG, we can have the lab work done then so that Joshua can eat after. If there is not enough time, we can have the labs drawn after the EMG and hopefully have time to eat some lunch before the pulmonary appointment.)
Tuesday, August 12th 7:30am daytime ventilator titration study sometime that night for nighttime ventilator titration study(Joshua will be staying overnight in the sleep lab. Testing will finish around 7 am on Wednesday 13th.)
Wednesday, August 13th 8:00am Admissions for Lumbar Puncture (can go to Admissions directly from Sleep Lab)11:00am MRI/MRS brain (we are having scans sent from Los Angeles hoping Joshua does not have to undergo any more MRI's this soon)
Thursday, August 14th9:30am Pediatric Cardiology May have an ECHO and HOLTER monitor during that appointment (ifCardiology feels this testing is necessary)1:30pm. Pediatric Neurology
Friday, August 15thif Joshua DOES have to do the Holter Monitor testing, we will need to return the holter equipment to the cardiologist this day before leaving to drive back home to San Antonio
If all goes well, we should know soonif Joshua will be able to get a diaphragmatic (breathing) pacemaker. We also may learn if Joshua will need a heart pacemaker, too. I'll update when we learn more and find out what our next move will be. We are pretty excited about the trip.
Thursday, July 17, 2008
MRI Brain Study Coming Up
We're going to California!Wednesday, we came home to an interesting phone message.A doctor at UCLA planning an MRI brain study,who was also at the CCHS Conference we attended in Orando,wanted to ask if Josh might be interested in participating in the study.I returned the call, figuring once I explained that Joshuais not the normal CCHS child (he was not born with hypoventilation syndrome and is not even positive for the PHOX2B gene) that they would not really want to include Josh in the study after-all. But after talking to the doctorhimself on the phone, he seemed even more interestedin including Joshua. I think it is because Joshua DOES have the problems they want to identify: hydration issues, body temperature issues, hormonal issues and hypoventilation issues.So, they are flying us to Los Angeles on August 1st,putting us up in a room for two nights and flying us back home when we are all done.Joshua was a little concerned about the MRI becausetwo of them he had to have done before included contrast (meaning he had to be stuck in the arm tohave some solution put into his vein - it is VERY difficultto get Joshua's vein and so that would be a BIG issue).But, the doctor assured me he does not believe in usingthe contrast solution because it can cause damage to thekidneys and he wants to keep this study the least invasiveas he can. So, Joshua's fears were calmed. And we agreedto go to UCLA.Since we have never been to Los Angeles or anywhere else in California, I thought I'd look and see what I could find of the area, for a preview of our trip.
Sunday, July 13, 2008
Pacemakers, Doctors and a Wreck
Breathing Pacemakers
Ever since Joshua was first diagnosed with his breathing disorder in September 2005, his doctors here in San Antonio believed he would benefit from a device known as a diaphragmatic (or breathing) pacemaker. Below is a brief description and info from Avery Biomedical – the maker of the breathing pacemaker:
A breathing pacemaker consists of surgically implanted receivers and electrodes and an external transmitter with antennas worn directly over the implanted receivers.
The external transmitter and antennas send radiofrequency energy to the implanted receivers just under the skin. The receivers then convert the radio waves into stimulating pulses.
These pulses are then sent down the electrodes to the phrenic nerves, causing the diaphragms to contract. This contraction causes inhalation of air. When the pulses stop, the diaphragms relax and exhalation occurs. Repetition of this series of pulses produces a normal breathing pattern.
A breathing pacemaker can provide ventilatory support for patients with chronic respiratory insufficiency whose diaphragm, lungs, and phrenic nerves have residual function. Typically, these patients have high spinal cord injuries, central sleep apnea or other central neurological disorders, or a paralyzed diaphragm.
Advantages of Breathing Pacemakers
Pacing has many advantages over positive pressure ventilation, including:
Breathing pacemakers provide respiratory function superior to mechanical ventilators since the inhaled air is drawn into the lungs by the diaphragm under negative pressure, rather than being forced into the chest under positive pressure.
Pacing patients are at much lower risk of ventilator-associated pneumonia (VAP) due to the reduction in suctioning, elimination of external humidifier and ventilator circuits, and the potential removal of the tracheostomy tube in appropriate patients.
Most patients prefer pacing over mechanical ventilation for a variety of reasons including normal breathing and speech patterns, ease of eating and drinking, and its silent operation.
Breathing pacemakers generally cost less than $1,000 per year in disposable supplies (antennas, batteries, etc.) to operate, which is substantially less than the rental fees and disposable supplies associated with a mechanical ventilator. On average, a breathing pacemaker will pay for itself in 3-4 years, and save at least $20,000 per year thereafter.
If you watched the documentary about Joshua and his disorder on Discovery Channel or Discovery Health Channel, you may recall mention of the pacemaker near the end of the hour-long broadcast. At the time the documentary was made and aired, we had hoped that a doctor in Chicago, Dr. Debra Weese-Mayer at Rush University Hospital would move forward with getting Joshua implanted with a diaphragmatic pacemaker. We did actually go there in September 2006 (a year after Joshua was diagnosed); but she did not recommend the device for Joshua at that time. And we have yet to be able to get in to see her again.
Joshua's doctors here in San Antonio, though, have not given up on the idea. They have been prescribing growth hormones and medicines to act as appetite suppressants in hopes that he would grow taller and thinner. They think that will help make him a better candidate for the pacemaker – since he will have more room for the pacers to be implanted.
Then, we attended a conference in Orlando, Florida in June where many patients with the same type of hypoventilation problems as Joshua who had been helped by the breathing pacemakers. We got the chance to meet them and hear their experiences. We also heard from a representative of the company that makes the pacemakers. And doctors from UCLA presented their results of implanting the devices into several patients. They even showed a video of the actual surgery to place the diaphragmatic pacemakers. All of this encouraged us to find other avenues to pursue the pacemakers for Joshua.
Dr. Colasurdo
We found a doctor much closer to us than the one in Chicago – this one in Houston, Dr. Giuseppe N. Colasurdo. He has experience placing diaphragmatic pacemakers into children – even those with Central Hypoventilation Syndrome. I contacted him and even spoke to a room full of his colleagues during a conference call on Friday afternoon. After hearing all about Joshua and our experiences, he says he thinks Joshua might make an excellent candidate for a diaphragmatic pacemaker; and he will have someone call to schedule us to come see him in the next few weeks. Dr. Colasurdo is also very up-to-date on issues facing CCHS (Congenital Central Hypoventilation Syndrome) patients – including a recent study showing these patients are at an increased risk of sudden death from pauses in the heart beats. Dr. Colasurdo wants their cardiologist and neurologist there to see Joshua during our visit.
And icing on the cake, our insurance and Texas Medicaid should cover the bills associated with our seeing Dr. Colasurdo – which was NOT the case with Dr. Weese-Mayer (in Chicago). We are still working on paying the last $3,000 worth of bills from that visit – which was almost two years ago. Medicaid Transportation should even cover the our travel expenses – which is a blessing since gas prices are so high!
Joshua's goal in getting a pacemaker is to eventually be able to get rid of his trach tube in his neck and not need a ventilator anymore. He really does not like having to roll that machine around with him everywhere. I'm sure he'd also love to not need a nurse with him nearly every minute of the day and night. He still may need those things – he may still have to hook up to his ventilator when he sleeps or gets sick. That means he would still need a tracheostomy (unless we could find something else that would work as effectively as the trach to hook to the vent). And, he may still need a nurse for some time to be able to help with his trach, ventilator, or pacemaker care. But with the pacemaker, there is a bit more hope of freedom some day from the trach and vent.
Service Dog?
At the conference, we also saw some folks being helped by specially trained service dogs. That is what interested Joshua the most. He absolutely loves pets and is great with them. He has always been so patient with dogs and other animals. He never loses his patients with them – as I find myself doing sometimes. He was told he would have to start fundraising as soon as possible to help cover the cost of the training of the dog. So, as soon as we got home from Florida, Joshua started getting cake mixes out and asking to make cookies to sell. He made about $14 dollars in the first couple of days. He asked if that was almost enough money to get a service dog? I told him it was a good start, but it would cost quite a bit more than that – I'm sure. The companies I contacted or looked up online about service dogs also indicated they only place service animals with patients who are 14-18 years of age at a minimum. So, Joshua may have a couple of years or more to raise the money necessary.
We have also received some upsetting news this past week – actually some regarding Joshua's primary doctor since his being diagnosed. And the other troubling news concerning Joshua's grandpa (my father-in-law).
Dr. Morse
Joshua's main doctor – Dr. Martha Morse – his pulmonologist – sent us a letter indicating she is cutting back her practice after 21 years. This means, we will have to choose another pulmonologist to take her place. She has given us names of a few other good pediatric pulmonologists in San Antonio that she would recommend. And I've already contacted one of them. We will still see Dr. Morse one more time (in August) before we make the transition to another doctor. But Dr. Morse has been the one we have come to depend on the most for more than just listening to Joshua's lungs. She has been the doctor who wrote orders for school, etc. She made arrangements for Joshua's home medical equipment. She was even the doctor who worked – even on her weekends off – to search for a diagnosis when Joshua was in the hospital the fall of 2005. She worked hard to help us find a way for Joshua to get Medicaid. And, we have depended on her for so much. Hers will be BIG shoes to fill. We will miss her terribly.
Papa Tom
We found out yesterday that my father-in-law (Papa Tom to the kids) is hospitalized. He has cancer. He began a third round of chemo last Monday because one of his tumors had gotten bigger all of a sudden. He had been doing very well for several months (thankfully). He and his wife, Betty had come to see us just before we left for our trip to Florida for the CCHS conference. They wanted to make the trip before he had to start chemo again. The trip had been a good one – with some fishing and a trip to the movies. But all of a sudden, Tom got very sick. It was bad enough that James (my hubby) took him to the emergency clinic. The doctor found that he had pneumonia, and put him on some antibiotics, etc. Tom wasn't feeling much better yet, but was able to make the 5 plus hour road trip back home shortly afterwards. It took some time, but he was finally feeling better when he began chemo last week. Then, days later, he began getting really sick again – with fever and vomiting – like he'd had while he was here. So, they hospitalized him. We are still waiting to hear what the doctors think is causing it and hoping Papa Tom will get to feeling better really soon. Keep him in your prayers if you don't mind.
Totaled Van
Our daughter, Steffany has had her driver's license for a few months now. And she got a summer job working as a lifeguard at Schlitterbahn Water Park. We decided to let her drive our old van – the one with over 200,000 miles on it. She was giving a ride to some of her friends who also worked at the park – but was only allowed to have one friend in the van at a time – due to stipulations on her license (among other reasons). We thought the arrangement was going along ok – the friends were supposed to be helping cover the cost of the gasoline. That didn't always happen. We ended up putting gas in the van a couple of times ourselves when Steffany would run it completely out of gas and couldn't even get it started. Her Papa Tom even paid for a tank of gas for her when he came for a visit.
Then, one night, we get a picture message on our cell phone that showed damage to the back end of the van – as it was parked in front of our house. The next morning, when we asked Steffany about it, she admitted that she had "backed" into a tree. But she had planned to get the van fixed without telling us about it. She said nobody was hurt and the tree was along the edge of the street – part of a field – not in somebody's front yard or something. She explained that a friend had called her needing a ride home from someplace where some guys were harassing the friend. Steffany went by and picked her up and on the way to the girl's house – down some back roads – the girl was waving her hands around in telling Steffany what she had been through with these guys. She had her cellphone in her hand; and upon waving her hands around, the cellphone had slipped out of her hand and out the open window. OOPS. So, even though it was dark and she couldn't see too well, Steffany started to back up so the girl could look out the window to see where her phone had landed when BANG, they backed into the tree or trees that lined the road like a fence. Neither girl was hurt in the slightest. Thank God. Below is some of the damage our poor van suffered:
We reported the accident to our insurance company and the insurance adjuster came out to figure the cost to repair the damages. He – not surprisingly – figured it to be a total loss. But, we decided to keep the van and try and fix it up as much as possible anyway, so we would have a backup vehicle that we could carry Josh and his ventilator equipment around in.
Steffany failed to tell us about the accident when it happened (someone else told us about it more than 24 hours after it had happened – but when they first noticed it). After that and upon learning of some other things she was doing that she shouldn't have been while she was supposed to be working, we decided Steffany should quit her job at the water park. She is in the process of finding a different type of job she can do closer to where we live and where I work (so we can keep a better eye on her). Steffany's driving priveleges have also been cut very short since the wreck, etc. But she is now – thankfully – showing some improvement in some of her behavior at home and with the family. We know she will grow out of this – but we sometimes wonder if we'll have all our hair by the time that happens. J
Well, that is a bit of what has been going on this summer. I've been posting a few pictures in the photo albums on MySpace of other activities – such as the evening we took my little elderly lady and her daughter out to eat bar-b-q. It was the first time she had been out to eat in years. The trip was a trial run for a trip to the doctor we will be taking on Monday in her new wheelchair accessible van (a big van) that I will be driving.
Thanks for your prayers and well wishes and don't forget to keep in touch, ok?
Thursday, June 26, 2008
Notes & Pics from our trip to Florida for CCHS Conference
********see the pictures for the rest on my MySpace blog page*********
The trip was great. We got started Tuesday the 17th early - like 7:30AM.
We stopped for a picnic lunch at Lake Charles, Louisiana. They had a nice little beach area and some picnic tables with shades. There were fish literally jumping out of the water - like 2 feet out of the water. We saw a couple of people wading out into the water and fishing. My husband wished he could fish there, too but we didn't have any Louisiana fishing licenses, so we just watched others fish. But we didn't get to stay and watch for long. We had many more miles ahead of us before we reached our 1st motel. We even drove through New Orleans, LA. We got up close to the Super Dome and we saw lots of damaged homes, businesses and even a Six Flags park on the East side of New Orleans. All of that damage from the hurricane a couple of years ago (which hit while Josh was in the hospital here in San Antonio). Our motel was in Ocean Springs, Mississippi. We arrived there about 7:30PM. We checked in and unloaded the van real quick and then headed for the beach. We walked around a bit and looked at everything, then decided we were hungry. We were hoping for a place with fresh seafood but didn't really see anything like that. We ended up at a place called The Mellow Mushroom. They made pizza and pretzels - fresh ones. The food was good and there was plenty to take with us to have for lunch the next day. We even drove through parts of Biloxi, Mississippi where all the casinos were lit up. We stayed at the Days Inn in Ocean Springs.Wednesday morning, the 18th, we enjoyed the free breakfast at the motel. The selection wasn't the greatest - but we found enough food to fill us up (cereal, toast, jellies, coffee, milk and orange juice). Then, we were on the road by 9AM. We drove through Mobile, AL on I-10. Did you know there is a tunnel on I-10 that takes you UNDER Mobile?! It was cool. Then, you cross a long bridge. At about the end of the bridge, there is a park where the battleship USS Alabama sits. We just HAD to stop and check it out. Josh didn't really want to go ONTO the ship or the submarine at the park (which was good because it would have cost quite a bit and taken a LOT more time) but we did check out several tanks, etc. all around the park. We also met a survivor of a WWII death march who had written a book about his experiences. We bought his book and he autographed it for us. Soon, we were back on the road and stopped again for some gas and just long enough to slap some sandwiches together and grab our leftover pizza. We ate our lunch as we drove through Pensacola, Florida. We got to our next motel - in Orlando - around 8PM (which was 9PM Florida time - because along the way we crossed the time zone). The hotel for Wednesday night was the Ramada and it was an old resort hotel. It was nice, had a great pool, game room, workout room, gift shop and piano bar. Josh especially liked this hotel - mostly because I let him put on his swim trunks and get in the pool - but just at the very shallow end. But it was the first REAL swimming pool he's been in in years! The hotel had a restaurant in it with a dinner and a breakfast buffet. By the time we saw the dinner buffet (which was a cost of $11.99 per person) it didn't look like there was a very good selection of food, so we opted to find some fast food nearby. I had KFC chicken. Josh had McDonalds. We were all happy with that. The guys played some pool before bed. The kids and I enjoyed the pool the early Thursday morning. Then we did the breakfast buffet at the hotel (even though it was a bit overpriced). There were more selections at breakfast and it was pretty good.Thursday morning around 10:30, we loaded up and went over to find the resort where they holding the conference. We decided to ask what time we were allowed to check in, and they let us go ahead and check in right away. We had our stuff to our room by like 11AM. Then we got signed up for the conference and collected our name tags, gifts and breakfast moneys. The conference was to start at 3, so we ran over and visited Give Kids the World Village (where we stayed when Make a Wish sent us to Disney World 2 years ago). They fed us lunch there and treated us to free ice cream, too! We hung out there a while and road the carousel. But time flew and we needed to get back to the conference.We met so many kids and even young adults at the conference with CCHS (very similar to what Josh has). Most of them had trachs, some ventilators, and others had diaphragmatic pacemakers like we want Josh to get. A member from each family was asked to stand and introduce your family and talk about where you are from and what accomplishments you had made in the past year or so. There were families from all over the country there - and even one from the Philippines. They fed us dinner at the conference then had a talent show for the CCHS kids. Afterwards, the guys wanted to play some pool and air hockey at one of the resort's game rooms. And before bed, we HAD to check out the pool. It had a water fall and a really long water slide! The resort was BEAUTIFUL!!!!! and FANCY!!!! but absolutely nothing associated with the resort was free. It was weird because our cheap motels included free breakfast, free internet connection, etc. but this place charged ALOT..We spent Thursday and Friday night at the resort and attended all sorts of sessions, learned tons, and met so many families facing issues with trachs, ventilators, etc. And I am encouraged that we should be able to find a doctor (hopefully in Texas) who implants these diaphragmatic pacemakers that Josh's doctors want him to have. We learned that the doctor we had seen in Chicago had been associated only with another company who made pacers - but ones that had been recalled. So, she was not likely to recommend the pacers for that reason.Anyway, we did not get a chance to go to Disney World or Universal Studios. Instead, we headed out to Cocoa Beach, drove by Cape Canaveral and up to Daytona Beach Saturday afternoon. We had so much fun at the beaches. We even saw little baby sand sharks swimming around our feet at Daytona beach. We also stopped at a city park in Daytona at the bayside. We talked with some folks there who were fishing. They told us they had seen dolphins and manatees earlier in the day. We wished we could have seen them. There was even this sign about the manatees up near the water. Then, we drove over to Gainesville, FL to spend the night there at an Extended Stay Hotel. It had a full kitchen in it, so I cooked breakfast for us Sunday morning.Then, we drove ALL DAY LONG Sunday and got to Lafayette, LA late that night. We skipped New Orleans via Interstate 12 to the north this time. We stayed at another Days Inn in Lafayette. The free breakfast Monday morning at this Days Inn had more selections than the first. We got back on the road around 9:30 Monday morning and met an old friend of mine (from junior high school) and her daughters for lunch in Lake Charles, LA. Josh even got a chance to fish a little in Lake Charles before we ate. James wanted to fish, too but settled for "helping" Josh.After lunch, we drove back into Texas and down around to Galveston. We rode the Ferry across to Galveston, and went to the beach there. James' niece's husband is a police officer with the SWAT team there in Galveston. So, he and his partner drove over to meet us along the Sea Wall. They visited with us a bit and then had the kids put on their body armor and pose in front of their squad car for pictures. They even showed Josh how to turn on the sirens and lights for the police car. Josh was all smiles for this. When they had to get back on patrol, we spent some time at the beach then went over to the SeaWolf Park at Galveston bay to fish some. We stayed the night Monday night at James' niece's house with her and her family. We stayed up WAY too late (like 2AM) visiting so we slept in some Tuesday morning. We hung out with them while it POURED rain outside most of the morning. Tuesday afternoon, James and Steffany went with James' niece to pick up her paycheck at a nearby airport where she is a flight instructor. She took them up in a plane and even gave James his first flight lesson - HE flew the plane!!!! The circled overhead and called us on the cell phone to come out and see them fly over. It was pretty cool. James LOVED it. When they got back, they grilled steaks and salmon for us and we ate and ate - it was SO GOOD. Then, it was past time for us to be on the road, so we said our goodbyes and headed for home. It took about 3 and a half hours to get back home from their house. We got hear about 10:45PM. Josh's nurse was supposed to arrive at 10PM, so we had to call her and tell her to come at 11 instead.Now, Josh wants me to hurry and talk to his medical supply company about getting him the special plug for his trach so he can swim again. And I need to talk to his doctor about finding another specialist - hopefully one nearby (maybe in Houston) who has access to the special pacemakers so Josh can get one implanted. Oh, did I tell you that they even showed a short film at the conference of the pacer surgery. It is pretty simple and we saw how well they worked in those other kids. I think it would be GREAT for Josh.Well, I'd better wrap up this novel and get on with my list of things I need to get done today.God bless,Vanessa
Thursday, May 29, 2008
gas prices, trips, band & cowboy hats
gas prices
How is the price of gas affecting your wallet? It now costs over $70 to fill our van up with gas just once. I haven't been completely filling it up, though, lately. I went to get enough gas yesterday to make the trip over to one of Joshua's doctor's offices (I had to pick up one of his prescriptions to take it to the pharmacy because it is a narcotic). I couldn't believe how little gas I could afford with the $25 I had budgeted for the trip. And this is just a short trip really – just halfway across San Antonio and back.
our big trip coming up
We have a really, really long trip coming up in a couple of weeks – to a conference about a disorder very similar to Joshua's. That trip is in Orlando, Florida. We plan to drive both ways to avoid some issues with medical supplies and ventilators, etc. Round trip, that will be over 2,400 miles! I sat down with a program to figure out our route and where we would be spending nights, etc. The program also allows you to include gas mileage and gas prices in the equation, to help you budget for it. The program showed our cost for the trip – in gas alone – would be over $600! Then add the price of food and lodging and it brings the price of this trip to more than double that!
We have 2 nights of lodging being donated to us while we attend the conference. And we thank God for that. But we also wonder how we will afford the rest. I trust God completely. I know that if God intends for us to attend, He will provide the means.
The conference promises to be very educational and a great opportunity for us to meet other people with central hypoventilation syndrome. Joshua's disorder also involves his hypothalamus – which is unlike the others attending this conference, but many of them will still be ventilator dependent and understand what it is like to not feel like you are suffocating when you should feel like that. Some will have undergone surgery to implant a diaphragmatic pacemaker – like Joshua's pulmonologist wants for him. We can ask them all about their experiences with the pacers and surgery, follow-ups with doctors, etc. It should help us better judge whether it's something we wish to pursue for Joshua some day.
I think it would also be helpful for Steffany to meet some other siblings of children with disorders like this. I know she must feel a bit left out a lot of the time because so much attention is focused on Joshua and his rare disorder. She is also dealing with regular teenage issues plus feelings she has over what she thinks her biological mother might have wanted for her if she had not passed away years ago.
another big trip?
The Congenital Central Hypoventilation Syndrome (CCHS) Conference in Orlando is not the only thing that may have us traveling far away this summer. We are awaiting word from Dr. Debra Weese-Mayer and her office. She is the specialist who saw Joshua and helped make his diagnosis. She moved in April from Rush Hospital to a new laboratory in another Chicago area hospital. She needs to re-examine Joshua to see what changes are necessary for his ventilation needs. And if he is to get a diaphragmatic pacemaker in the future, she will be the one to arrange for that process. Dr. Weese-Mayer is the doctor who tested Joshua extensively in September 2006 in her sleep lab and determined he needed to be hooked to a ventilator 24 hours a day and not just while he slept. Joshua has grown a lot since then and even his pulmonary function tests have shown some improvement. Since Dr. Weese-Mayer has also been following at least 8 other patients in the world with Joshua's disorder, we cannot wait to find out if she's learned more about what we can expect for Joshua.
If she is able to get Joshua scheduled this summer to come see her again, Joshua and I would be making that long journey to Chicago. But we are told that Medicaid should cover the transportation costs associated with that trip. We also think Medicaid and our other insurance would cover the doctor bills associated.
hydrogen generator
We've been looking at ways we can help lower our gasoline bill – especially for our very long drive this summer to Florida. And we are thinking of trying out a home-made type of hydrogen generator to hook up to our vehicle. We are still collecting items to make the device. But we hope to have everything within a few days and James will work on putting it together and attaching it to his car first – to test it out. (We don't want to take any unnecessary chances with the van). From what we've read, this hydrogen generator is supposed to help with gas mileage with improvements up to 50 percent.
school & band
School is drawing to an end for the summer. Josh will be a 5th grader in just a matter of a few days. And his big sister, Steff will be a Junior in high school. It is so hard to believe they are getting so grown up. It seems like such a short time ago when Josh was just a baby and Steffany was starting kindergarten. I know it won't really be long before Steffany is graduated from high school, headed to college, then on to start a family of her own. And Josh will be through intermediate school, then junior high and on to high school before you know it. Time sure flies when you're not paying attention.
Josh went today to check out the drums for the school band for next year. The students are required to check out at least two other instruments before they try for the drums, I guess because they are so popular. But, since Josh is on a ventilator, and they don't want to take any chances with him trying to play an instrument that he has to blow into, they went ahead and signed him up for percussion without him having to try out any other instruments. Now, he will need a beginner's percussion kit that includes a practice pad, bell set, sticks, mallets and a case. They had the various vendors there at the school today, ready to sign us up to rent or buy from them. But, I told them we weren't able to do it yet. Then, when I got home, I posted on our local FreeCycle that I was looking for the kit for Josh if anyone had a set they were not using and wouldn't mind donating to us. I think I might have found someone who has one – she's checking to see if the kit is complete with all Josh will need. If so, that would sure make my (and Josh's) day!
After the band try-outs, Joshua and his grade level had their end of school year program. It was so cute. It was like a hillbilly Cinderella story. The kids dressed up in jeans, white shirts, bandanas and cowboy hats, and sang some funny western songs. Josh had hoped to get a speaking part, but ended up just singing with the majority of the students. I think he would have been pretty nervous and might have clammed up if he'd gotten the speaking part – so it worked out ok.
Sunday, May 11, 2008
Sharing Mother’s Day Current
How was your Mother's Day? Mine started out like this.....I got up to the sound of my phone beeping. Every single beep was an alarm telling me there was a new message on MySpace. I thought to myself, "I must be getting Mother's Day greetings from friends and family.... awww Mother's Day."I went down to start the coffee, and Josh had heard me get up, so he got up too. His nurse had left a few minutes before he came down. He couldn't wait to share his Mother's Day gifts with me. He had made some of them and others he had earned with points at church in AWANA and used those points to buy a couple of items for me at "store."With a big smile on his face, he ran over to take one of the gifts from his "hiding spot" behind the cushion on the couch and hurriedly handed it to me, his eyes wide with excitement. I exclaimed over it and opened it up. Inside a plastic ziplock bag was a paper... this paper:
and a piece of pink tissue paper with this wrapped up inside:
the little card on this beautiful package reads:This is a very special giftThat you can never see.The reason it's so special isIt's just for you from me.You never can unwrap it.Please leave the ribbon tied.Just hold the box close to your heartIt's filled with love inside.Josh explained that he picked the wrapping paper because it had my favorite, butterflies on it. And he knew my favorite color was purple so that is why it had that color ribbon. And, his teacher had asked him if he'd like a magnet for the back so we could put it on the refrigerator. He said "oh yes." So, then he took it from me to go find the perfect spot on the fridge for it so I could look at it everytime I fixed a meal.And, oh.. that's not all. Josh then raced over to get me the other gift he had for me - the one he "bought" with his points at AWANA. It was for me to plant some flowers:I told him we would have to get some potting soil and plant the flowers after church.He decided he was hungry and he wanted to make me waffles with my new belgium waffle baker (I was given this waffle baker - which works like a charm - along with a nice pressure cooker and some bags of food - all from a participant of an internet group known as FreeCycle. I consider these items as mother's day gifts in a sense, too since I got them this weekend). Since Josh had never used a waffle baker like this before, I told him I had better help him out with this task. So, together we got all our ingredients together and mixed them up. We heated up the waffle baker (it plugs into the wall) then made the most delicious waffles. Josh decided we also needed bacon with our waffles, so he got both the regular bacon out and our special turkey bacon (less fattening, you know) out of the fridge. It all came out great. But taking the extra time to really fix breakfast made us a few minutes late to Sunday School. Oh well, it was worth it. Josh and I had a great time fixing breakfast together and taking plates of food and mugs of coffee to Dad and Aunt Amanda (who were both still in bed at the time). Steffany came down and ate hers with us.After church, my sister and I called our mother and sang "Happy Mother's Day To You" to her. We visited with her on the phone a while. Then, we took Steffany and one of her friends to work, and then went to eat lunch at a place in New Braunfels called TJ's Burgers. James and I had the best chicken fried steaks, green beans and fried okra - yum! And Amanda bought dessert - I had peach cobbler ala mode (that means with ice cream on top - even though the boy who took her order then asked her if she wanted ice cream on top after she told him she wanted it ala mode. :) ) It was delicious too - but I couldn't get it all down. I was so stuffed.James had wanted us to go fishing, but the wind was blowing a bit much for that. I was kind of glad anyway, because it gave me a chance to take a nice long nap. I had been hoping to try and catch up on some sleep for a while now. It was heavenly.Then, we watched the Spurs play tonight - and they won!!!! Yay!!!! Oh, and we DID plant those marigolds. I'll let you know when they sprout. I made some delicious Mexican Casserole for dinner during halftime of the Spurs game. And now the guys are watching Star Wars as I type this. But Josh did pose for a picture with his paper he made me at school:That smile is nothing compared to the ones he had as he gave me my gifts this morning and as we worked on breakfast, though.I also received the following gifts:cards from James and my sister, Amanda:and flowers James gave me last night:I had a very nice Mother's Day. Joshua's oxygen and carbon dioxide numbers were doing well enough that he got to take several breaks from his ventilator. He was off the vent when he gave me his gifts and helped with breakfast. Then he came off again to play a couple of video games at the restaurant where we had lunch. And he came off the vent to help me plant Marigolds. His nurse just arrived and we're about to head to bed.I hope you had as nice a Mother's Day as I did!
Thursday, May 08, 2008
Counting my blessings….
It is so easy to get discouraged and find things to complain about. It's no fun to have to lug Josh's ventilator around all the time, having to fight with him- when he becomes symptomatic- urging him to drink more. I also hate dealing with bill collectors and all the red tape with any kind of government or insurance help. And don't even get me started on bedpans!
But really, we all have SO MUCH to be thankful for… so we should begin to count our many blessings… I bet we can't even list them all:
Josh is NOT in the hospital - yay! It has been over a year and a half since his last hospitalization! He's had some close calls, but has been able to avoid being admitted. In fact, Josh is feeling pretty good, considering. Of course, he still obviously needs his ventilator and growth hormone shots and nursing care. And we have to continuously bug him to drink and take his special nose spray to keep from becoming too dehydrated. Josh has been doing pretty well since January. That is when he caught some nasty virus that was going around. It makes most of us feel like crud, run some fever, etc. but with him, it meant we had to give him oxygen constantly and suction out his trach a bunch more. Josh is used to being able to disconnect from his ventilator to go to the bathroom, load or unload from a vehicle and for small breaks during the day. But when he gets sick, for some reason, his body can't handle those breaks. So, we are so glad he got over that virus and is back to as close to normal as possible.
Josh got the chance to meet the lady who will be his new nurse at school next year. His current nurse got the awesome opportunity to be the official school nurse at the school where she and Josh have been this year - it's where her daughter will begin kindergarten next year, and where her son will still be there. So, the district needed to hire a new nurse for him. It sounds like they found a very knowledgeable and friendly nurse to fit the bill. I can't wait to meet her!
Josh will soon try out for a part in a short school program. He is usually too shy to participate in something like this little play, but Josh seems genuinely interested in doing this one. It means I'll have to take him to school early one day next week - but it's for a good cause. J
And, he will get to try out to play an instrument in the band at his new school next year. Tryouts are May 29th from 4-8pm. Josh - at first - said he wanted to play a drum in the band. Now, he's just anxious to see all the choices in instruments. He may like to play something else. Anyway, Josh just lights up when he talks about getting to be in band next year. I think we will have to rent the instrument he will play - hopefully he will choose something we can find real cheap. I'll leave how we get the instrument in God's hands.
We are planning to go to a conference in June about a disorder with some similarities to Josh's disorder… and it's in Orlando, Florida! I will get to learn more about the diaphragmatic pacemaker - something Josh may get some day so he doesn't have to be on his ventilator all the time. And Josh can meet some kids who have trachs and vents for the same reason as him. The support group for that disorder - CCHS- is even helping with the cost of our room at the resort where the conference will be held for two nights. We are working on raising the money to get us there and back. We are planning to drive our new (used) van. We will be staying in cheap motels on the way to and from Orlando. If we raise enough money, we'd love to get the chance to go for a day at either Disney World or Universal Studios while we are there. Either way, it will be a great chance for a vacation for us. And this is another expense I'm just leaving to God to provide.
God has already provided us with so much - a newer van. We are having some trouble getting enough bids on the lift or ramp for the van, but hoping we can come up with that all-important third bid soon. Oh, and I found - while working on paying some bills - that our tax incentive check was deposited into our bank. That money is some I'm hoping to save for our Orlando trip - but I guess we will see.
We are still hoping to hear when Josh will be going back to see Dr. Weese-Mayer in Chicago. She changed to a new hospital in April and we are waiting for her office to get everything worked out to fit Josh into the schedule. I think Medicaid is supposed to cover our transportation and lodging when we go this time - thank God. We are still working on paying off the bills left over from the last trip. But we are chipping away at them little by little.
I have a couple of other doctors to check with for follow-up visits with Josh. But, they are both local and accept Medicaid.
I am also thankful for my home, my family, church family and for my many friends. I want to say a special thank you to my mother this mother's day weekend. I believe God used her in a powerful way to help shape my character and mold me into someone God could use even further. I just hope I'm doing all that God would have me to do.
Saturday, April 12, 2008
Poteet Strawberry Festival Current
POTEET STRAWBERRY FESTIVAL
We'd been seeing the ads on TV for the last several days...a KENS 5 TV news anchor listing some of the great foods they'd have:
strawberry shortcake, strawberry ice cream, chocolate covered strawberries, strawberry NACHOSmost of that sounds good... so I check out the website to see what it's all about....The website tells of Rodeo & Bullridingall kinds of kids activities like a bird showand a bear showeven a magic showa petting zoogun fighters
and don't forget, the carnival
we learned the Poteet Strawberry Festival is one of our state's oldest and most popular events...
and if that wasn't enough... the first night was FREE entrance and DOLLAR rides... even parking was FREE.how could we pass up such an opportunity?!?
Friday night - KENS night - gates opened at 6PMwe left our house around 6:15 - ok, we'd be a little late (it should take about 45 minutes or so to get there)we arrive about 2 miles North of Poteet at approximately 7:10... and find a long, long, LONG line of cars.... remember this is one of the most popular events in Texas... but it is also one of the oldest and most favorite right? I figure surely they have things planned to keep people moving right along... I figured WRONG.It took 2 HOURS of waiting in that ridiculously long line of cars to get to the Fairgrounds. That means we arrive around 9:15!!!! ***keep in mind, the event closes at 11PM**** we were also hoping to leave in time to get home between 10-11PM (we had a nurse with us whose shift was supposed to end at 10PM... another nurse who was to come in for the start of her shift at 10PM. I had told her we would probably be a late - but I had NO IDEA it would be that late!OK, so we keep our cool and decide we'd better check it out after such a long wait to get in.. it HAS to be wonderful, right?Inside, there are no shows - any that had taken place were long since over by now. There were vendors, though - LOTS of them. We just had no money to buy anything. We weren't really interested in shopping anyway. (We can shop at a flea market like 2 miles from our house if we want to shop for stuff like that).There is lots of food, too - most of the good stuff also had long lines. We waited in line for turkey legs. $5 a piece, but they were pretty tasty!
My sister and Steffany tried some Strawberry Shortcake. I had chocolate-covered strawberries, and Josh had a couple of cookies that looked like strawberries (he doesn't really care that much for strawberries. He likes cherries better) but he enjoyed his cookies.
then, Joshua tried his hand at a few carnival gameshe found that they are a bit harder than they appearWe didn't have time to wait in the long lines to ride any rides.We never saw any petting zoo (it may have been there, but we didn't see it). We also never saw any bears, birds, magicians or gunfighters. All we saw of any rodeo was a man riding his horse in the parking area as we were leaving.We finally left around 10:45PM. Getting out of the fairgrounds proved as chaotic as they wait to get inside. In fact, the people directing traffic turned us in a full circle out of one parking lot down a piece of road, then back into the same parking lot we had just come from - because they were now opening the entrance as an exit. But, they stopped us from exiting the parking lot again to let OTHER people go ahead of us - people who had NOT just made that loop back into the lot. It was crazy! We arrived home AFTER midnight (there was construction on I-35 that brought traffic from 3 lanes down to just 1 for several miles).After that experience, I don't know that we will try the Poteet Strawberry Festival again. It just didn't live up to our expectations.
Tuesday, April 08, 2008
Let the Bidding Begin
As most of you know, we have needed a vehicle with a lift to pick up Joshua’s ventilator cart and load/unload it because it is very heavy. His schoolbus has a wheelchair lift - but our van did not.
Our van was 12 years old with over 200,000 miles on it and was breaking down frequently - which was dangerous when hauling around a kid on a ventilator to doctor appointments, etc.
Over the past few months, several fundraisers were held to raise the money for the newer van. Our church, Cibolo Valley Baptist raised over $2,000 in a golf tournament. The church youth group donated hundreds more they raised in their Valentine banquet. We raised some selling candles. And a family from Michigan got into the spirit and raised about $7,000. Finally, we had enough to purchase a van - not a new one, but a very good used one.
A few weeks ago, we found the right van at Cavender Autoplex on San Pedro in San Antonio. It is a beautiful white 2003 Ford Windstar SEL with all leather interior and only 47,000 miles on it. It drives like a dream. And, it should work great but needed a lift installed.
Our Medicaid case manager assured us that Medicaid would cover the cost of the lift install - up to $4,000. But first, we needed to get three bids from companies that install those kinds of lifts into vehicles.Yesterday (Monday April 7th) I visited the first lift installing company, American Medical & Rehab Co. in NorthEast San Antonio. I spoke with that company’s Vice President and Rehab Engineer, David Dauer. He was a very nice, Christian man. He was very helpful and knowledgable. He even has years of experience as a caregiver for family members with serious medical ailments. David showed me both in person and on the internet several types of lifts that are frequently installed on vehicles for wheelchairs and scooters. Most of them would not be practical for our vehicle and for the ventilator. But he did have one lift that he felt would do the job well. It is the Superarm 2000.
We need to find out if anybody else in our area carries these lifts, and if so, get two more bids and get them turned into Medicaid. Hopefully, we will be able to get the new lift installed and working soon.We want to thank everybody who donated time, effort and money to help us get our van. God has used some wonderful people to fulfill this need in our life. God bless you all!
Thursday, March 13, 2008
Alamo and Snow
Today was field trip day for Josh and his fellow 4th graders(I was a chaparone)We went to the Alamothen to the IMAX theater to watch the movie, "The Alamo"below is a clip from a different Alamo movie (I couldn’t find one from the movie we saw - but this is similar)
then back at home, Josh received a big package!check out the pictures below:
Thanks to the family in Michigan who sent Josh the snow!He absolutely lit up getting to play with it!
Wednesday, March 12, 2008
Josh Cognitive Testing and VAN update
A report from Joshua’s latest school ARD (Admittance, Review and Dismissal) meeting shows Joshua lost a lot of ground in his cognitive / IQ levels over the past 3 years.. information about that below, but first an update on our van situation
Picking out the right van can be a tough job. We thought we had found a good one - an Oldsmobile- at CarMax Saturday - but it turned out to have trouble with the brakes, so we passed on it - besides, it was a 1999 - already 9 years old.Then, on CraigsList, we saw a van listed that had belonged to a Missionary couple who have traveled back to China. Their van was a 2005 Dodge Grand Caravan and looked very promising. It cost a couple thousand dollars more than the 1999 van from CarMax, but was much newer. The problem with it is there is no air conditioning in the back - which we really need for Joshua due to his body temperature and hydration issues.So, James stopped off this morning at Cavender on 281. At first, he did not see any vans. But just as he was about to leave the lot, he noticed 3 vans kind of out of the way. He decided to check ’em out. The one he decided was just perfect to meet our needs was priced a bit too high for our budget, so he told the salesman who came to talk to him about our situation. The salesman had to talk to the manager - who then agreed to sell us the van for the amount of cash we would have by this weekend - tax, title, license and all! (bringing the price down about $1300). James had to leave for work after test driving the van and calling me several times to fill me in. Then, I went and picked up a cashier’s check for the money we had waiting so far for the van. As soon as Josh got home on the bus, I loaded him up and we went over to see the van for ourselves.It is a 2003 Ford Windstar SELwith 47,000 miles on it.The interior is leatherIt has rear air conditioning and a flip down screen - hooked to a VHS player(not a DVD player - James is sure we can hook up a regular DVD player to it or the kids can hook up their game system through the VHS player.)Anyway, it is very nice, James says it drives very well. The salesman showed me the original sticker for the van, and when it was new, it sold for $34,000!!!!I signed the papers and handed over the cashier’s check for the money we have so far. We should have the rest by Saturday or Monday. So, by next week, this van should be ours! Hallelujah!!!Back to Joshua’s latest ARD meeting and test results.The ARD facilitator said results from Joshua’s latest tests about his cognitive / IQ levels show a significant decline since his last testing three years ago. It is a big enough drop that it places him within the levels of mental retardation. For instance, Joshua can add or subtract simple problems, and can even do multiplication problems using a chart. But he cannot understand how to do a division problem using a multiplication chart. He cannot spell compound words or even read many compound words. He cannot write compound sentences. And he needs extensive one-on-one help with almost all his schoolwork.So, it is being suggested that he might benefit from "life skills" classes rather than regular, academic classes next year. This would mean he would attend a different middle school than the kids in our neighborhood as well as kids he is going to school with now. He would virtually know nobody in that school.I am not ready to give up on Joshua and his education. Joshua is looking forward to going to school with all his classmates. And he wants to play a drum in the band there. He does NOT want to change to another school. And I do not want to tell him he cannot do something that important to him.That said, there is a coach at his school who has been studying about the brain and ways to get it more "fired up" to learn. What she is suggesting is called "brain gym" exercises. They include drinking more water and doing simple exercises that promote use of both sides of the body interacting with each other. It also involves exercises to de-stress and focus your attention. The coach, Joshua’s teachers, his nurse and I are going to try and work together to encourage Joshua to do these things on a consitant basis to see if he can realize some benefits over the next 9 weeks of school. We hope this will cause his handwriting and schoolwork to improve drastically, so he has a chance to catch up with the other kids in his grade level. So, please pray for us in this effort! THANKS BRAIN GYM EXERCISES
Saturday, March 08, 2008
Found a Van!
We have been looking for a van we can afford with donation money we've received. (We've been told to expect about $6,000 more very soon - which would bring us to about $10,000).
Well, we found a van!
We think it will fit the bill. Remember, the van we are looking for needs to have fairly low mileage. It must pass mechanically for Texas Medicaid to pay for a lift to be installedfor Joshua's ventilator cart.
The van is a 1999 (I know it's older than we figured) Oldsmobile Silhouette Premiere.
It has less than 53,000 miles on it - VERY LOW for a vehicle that is nearly 10 years old!
(our current van has more than 200,000 miles on it and it is just 3 years older than this van).
The Oldsmobile has quad seats so one can come out where the lift will be installed.
It has the rear air conditioning.
It has very comfortable, leather seats!
It has been very well taken care of and looks and feels almost like brand new! Not a scracth on it!
It will have it's brakes and shocks replaced/repaired, then it is ready to go!
The one thing missing - that Josh wants, anyway -is a flip-down DVD player. Josh really wishes for that.
Car Max - the place where we'd be getting this van DOESinstall them, too, if we want to pay a bit more for one.We're not sure about that just yet. It doesn't really seemnecessary, so that may have to wait.
Want a closer look at the van and all its features?
click HERE.
Wednesday, March 05, 2008
Josh Testing, Steff Driving
Josh – School – TAKS Test & Star Student
Joshua is taking the Texas Assessment of Knowledge and Skills (TAKS--) test today... which is a really important test for him to pass.The ratings that states award schools are determined largely by how students perform on the TAKS. Kids in 3rd, 5th and 8th grade cannot be promoted to the next grade unless they pass the TAKS. And, seniors can't graduate without passing the exit-level TAKS.Joshua has a learning disability that means he will likely have great difficulty with this test - especially because he is allowed NO help of any kind unless he decides to raise his hand and ask for the only help allowed - for the problem to be read to him. Most of the time, the teachers or even his nurse might recognize he is having trouble understanding what he is reading and will ask him if he needs help. Then, he will let them help him. He is NOT used to ASKING for help, though. And today, nobody is allowed to even hint with body language that he might ask for help.Luckily, Joshua's health seems to be pretty stable right now. His nurse is with him, so he should be just fine. I know it will be hard for her to watch Josh struggle with the test and not be able to say anything to him about it. I think we'll all be glad when this school day is over.
Thursday, James and I are planning to surprise Josh at school to eat lunch with him. Joshua was named Star Student of the Week this week. One of the privileges of this honor is to have someone come eat lunch at school with the student. This will be the first time that BOTH of us get a chance to go over and eat with him together. Now, we just have to see what's on the menu. James may have to pick us up something to eat at McDonalds or something. We'll see.
Steff – Braces - Driver's License – Work
Tuesday was a busy and important day for my 16 year old daughter, Steff. Josh and I went to pick her up from school because she had an appointment with her orthodontist. That in and of itself is nothing too major. She's had braces for a few months and has to go to the ortho. once a month. But it was what was planned for after this appointment that made it a day of significance in her life. She was going to get her official driver's license.
Steffany took driver's ed over the summer last year and got her driver's permit – so she could practice driving. She had to pass a written test at the end of driver's ed – which she did. And she has been practicing some for the past several months. So, it was time to take the next step – the actual license. But, with this "graduated driver license" process, she will still have a stipulation on her license for the next 6 months. She cannot have more than 1 person under 21 in the vehicle with her who is not family. She also cannot driver during certain hours or be using a cell phone while she drives. If she is caught violating any of those or gets another moving violation, she will have to pay a fine plus a fee to take a driving test before she can get her license back. If she does well over the next 6 months, she will have the restrictions removed and will have a full-fledged license!
But there is one hold-up. Steffany needs to be covered on our insurance before we can let her go and drive our vehicles. And since she is so young and inexperienced, insurance for her is going to be pretty steep. Obviously, we do not have the money to afford expensive insurance, so it will be up to Steffany to do some work to help pay for it. Only, she has not really shown much enthusiasm in getting a job. She enjoys sitting in the bed watching tv too much. She does insist a friend is trying to help her get a summer job, so we will see if that works out. Hopefully she will get a job right close to home and will be disciplined enough to save some money for a car, too.
All this past week, since school got underway again, we have been having to get up at like 5:30AM. So Saturday, we slept in until about 10AM. It was great!
We had a few things to get from a violin shop in New Braunfels Steffany would need for school Tuesday. We had to get them before Duckworth's closed at 3PM. So we said we would do that and run into Walmart for a few things; then come back and join them for the pool party. That would also give Steff a chance to hang out without her whole family tagging along!
While in Walmart, we picked up our licenses: James - hunting & fishing (the works), Josh - hunting (cause he's too young to need a fishing license), and me - all water fishing. I like to fish; but I don't have any desire to hunt. But we did hunt for school supplies for Steff in Walmart. We just didn't find much - that store had been cleaned out of spirals and paper and so forth. We ended up finding a much better selection of school supplies at Walgreens later in the day.
We did manage to find the pool where the youth swim party was going on at the Forest Waters Club in Garden Ridge. Wow, that place is nice! The swimming pool is inside a greenhouse type building with a roof for shade over some of the pool. There were window doors you could open onto a huge deck area with tables and chairs. The club also had a small lake and a pond. Oh, the pool was a salt pool - no chlorine. Very nice! Josh even got in and threw a football and basketball around. He was very careful not to get his neck submerged, careful of his trach. But I think we all had fun. And, we got to enjoy hamburgers, hotdogs, chips and sodas that the youth pastor brought along!
Then, that evening, we decided to go see a movie at the Rialto Theater. It is the movie theater in San Antonio where they have tables right in front of your seats in the theater and waiters come and take your food and drink orders before the movie starts. Then they bring it all to you during the movie. We decided to eat dinner there this time. James, Josh and I had the chicken fried steak and Steff ordered a pepperoni pizza with ranch dressing to dip it in. It was all good, but James decided the food didn't settle well with him.
We watched Star Wars Clone Wars. It wasn't really the movie James or Steff (or even I) would have wanted to go see the most. But Josh was excited about it, so we gave in and went to see it. It is an animated version and starts off fairly slow. But it has some cute characters and a decent storyline. We actually enjoyed it fine. But I still want to go see Tropic Thunder. :)
