A Day in the Life of Devin
Just a short little page to update family and friends on Devin's progress while undergoing treatment for a relapse of leukemia and his second bone marrow transplant. Devin is currently in remission and we plan to keep him there FOREVER!
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Next Clinic Appointment:January 15, 2008
Devin's mood today was:
Visit some of our friends!
Barrett
Joshua
Angel Ryan
Angel Connor
| CURRENT MOON lunar phases |
Saturday, December 25, 2004
Merry Christmas Everyone!
Tuesday, December 14, 2004
Cruising Along
Our Devin is still cruising along, doing wonderfully. His skin is looking so much better. Dr. Frangoul was very pleased with how the redness in his arms is all but gone. Even slathering on sunblock, his arms are still getting sun, which causes the redness. We still have a few spots on his face but over all, he looks great.
Devin gained a teeny bit more weight, a few ounces, but any gain is great. We did not get his counts back but I assume they are fine since no one called to tell me otherwise.
Devin continues his prograf taper, we are down to .9 twice a day. Woo hoo! I think we will be totally off it in February sometime. Since he is coming down on his prograf, I was told to not renew his amoxicillan and just stop it when the current bottle we have runs out. That means one less medicine to take on a daily basis. Slowly but surely we are dropping medicines.
We are up in the new clinic now, the office switched from being up on the inpatient floor to the doctor office building. It was the first day in the new clinic so everyone was wandering around, somewhat lost.
Kierynn surprised me by willingly giving Dr. Frangoul a hug when he asked for one. She is rather standoffish so I was not expecting her to do that.
Our power was out from 7:15 pm until 5:40 am...got a wee bit chilly in the house!
Since everything is looking good, we have out next appointment in 2005.
Sunday, December 12, 2004
~ * ~ Happy Birthday Devin!! ~ * ~
Tuesday, November 30, 2004
2 More Pounds
Devin is continuing to gain weight. He was up to 57 lbs today, which is fantastic. It is great to see him looking good.
We stopped to see Miss Yolanda and had a surprise, Nurse Anthony was there too! Anthony usually works the night shift so the only time we see him is the rare occasion we see him in our local Wal-Mart. Yolanda said that Devin was feeling like a solid guy, which he is.
We are still doing his prograf taper and have the protonic ointment for his face. Bad mom wasn't as dilligent as I should have been over the holiday so his GVH is still lingering. It is just a few spots on his face and hands so I have the oinment out to be sure he has it put on daily.
All of Devin's counts are looking fine and we will go back in 2 weeks. Ugh, just when we start to go longer between visits, we get a GVH flare up and are back to every two weeks. I will still take that any day over the twice a week visits!
At our next appointment, on the 14th, we will be up in the new doctor offices. Since the move to the new hospital, the clinic has been temporarily housed in a patient area, the exam rooms being actual patient rooms. The clinic is supposed to move on the 13th though so we should be up there in the new offices rather than up on the 6th floor.
Thursday, November 25, 2004
~* ~* HAPPY THANKSGIVING! *~ *~
Wednesday, November 17, 2004
Tooth Fairy!
When we got back from Vanderbilt yesterday, the dentist called. Devin had an appointment in December to get two baby teeth pulled in effort to encourage some of his adult teeth to move forward. They had a cancellation for today so after jumping through some major hoops, we were able to get him in at 8 am.
The appointment was actually very quick, we were in and out in less than 40 minutes. Devin was quite disappointed that he had to go to school after all. He felt he should be able to stay home but the dentist gave the thumbs up to go to school.
Even with the two teeth gone, there is really not much different in the way Devin looks. Hopefully the two teeth will move forward now that the baby teeth are out of the way.
Devin is very happy to have his dad back home again too!
Tuesday, November 16, 2004
Going Well
Devin had an appointment today. Things are still going great. He does have a bit of GVH going on, which I had suspected. It is nothing major, just some dry skin on his face. Dr. Frangoul gave us a prescription for a topical version of Prograf to put directly on the areas. It does not get absorbed so we will just contine Devin's prograf taper on schedule.
Devin delivered some of his popcorn today. Miss Linda was up on the floor and able to say hi to us but we missed seeing Miss Yolanda.
While at the appointment, Devin talked to Dr. Frangoul about growing up in another country. For Cub Scouts, Devin is learning about different languages and cultures. One of the requirements is that he learn 10 words in a different language. Greg translated the Cub Scout Promise into Arabic and Devin has been working on learning it.
Since we have a bit of GVH going on, we will be back up here on the 30th!
Tuesday, October 26, 2004
New Photos!
I added two photos that Donna took of Devin and Mr. Carroll, the gentleman the new hospital is named for. There is a link over on the left.
The popcorn sales are over. Devin sold $259 worth of popcorn, which put him in 3rd place. Ryan sold $229, for 5th place. The two top sellers were over $300. I am so proud of both boys for going out into the neighborhood selling for the Cub Scouts.
No other news to report right now, gotta make a run to Vanderbilt later this week to pick up some medication. I forgot to call in the refill before our last appointment...whoops! I try to do that so I can just pick it up then.
Tuesday, October 19, 2004
The Taper Begins
Today we had a regular clinic appointment. It would be great if all of our appointments went so quickly as this one. We were in and out in under an hour, I loved it!
Donna stopped by the clinic for a visit and to get some popcorn (Thanks Donna!) She also brought us copies of some photos and as soon as I get them scanned, I will post them up.
We are beginning our prograf taper. He will go down .1 ml each week so in about 5-6 months he will be off it. This may seem slow to people but after the horrific GVHD that Devin suffered with, I am all for going very, very slow.
Friday Devin had a dental appointment for a check up, cleaning and to have his molars sealed. While there, we discussed his teeth and what to do. He has his upper eye teeth coming in behind the rest of his teeth, almost in the roof of his mouth. Obviously, orthodontics are called for but right now he can't have any work done. Once he is off all his major drugs, then he can. Extractions are okay as long as we boost him with antibiotics prior to it. His dentist wants to pull two baby teeth to encourage the eye teeth to move forward some. Even doing that, Devin will still need some pretty major work.
On the school front, he is doing fairly well. He is getting A's and B's except in the bane of his schoolwork, spelling. He can't spell to save his life even though he is clearly trying and putting the effort in. Devin spells how he speaks and for some reason, he just tends to ignore vowels in words. Here is an example of one of his stories to give you an idea of what I mean.
all oof us camping awt wish a dog in the woods Bars and it chrid to eat us and it did men men men Bars the dog scvid.
All of us camping out with a dog in the woods. Bears tried to eat us and it did. Mean, mean, mean bears. The dog died.
Now, I can read what he writes and his teacher can sometimes translate it because she knows what he is trying to say. At this point, Devin should be writing better and having less phonetic spellings. I am fairly sure that this is an effect from the radiation so I am going to speak to the hospital educator to find out what his teacher needs to test him for so we can get him some additional help. It is only in spelling/writing that he is struggling.
I am sure the story above was inspired by our weekend camping trip. Of course, there were no bears (only bobcats, coyotes and owls) and we didn't bring a dog along. As far as I know, no animal died during out trip either. We had a lot of fun although it did get cold on Saturday night. Devin got some awards during our Pack meeting and the entire Pack worked on a belt loop.
This coming weekend, we are going to a place called Amazing Acres to get some pumpkins and view various animals. It should be fun.
Our next clinic appointment is on November 9th, see you then!
Wednesday, October 06, 2004
Two for the trip of Two
This week we ended up down at Vanderbilt two days in a row. This was scheduled in advance but still a busy two days.
First, Devin had his regular clinic appointment yesterday. He now weighs 56 lbs and is doing well. He does have some dry skin going on (like this is news?) so we are going to try some lotion to see if it helps out any. I had tried some and it didn't seem to do much but we are going with a Dr Frangoul recommended brand. Devin's counts look great, right smack dab in the normal range. On his next visit, we will begin his Prograf taper.
Devin is selling popcorn as a Cub Scout fundraiser and brought along his order form. He batted his blue eyes and asked sweetly if people wanted to order popcorn. He managed to wrangle an order out of quite a few of the nurses and staff. If any of YOU reading would like to order popcorn, send us an email for the pricing and we can hook you up! You can read about the various types he is selling at Trails End Popcorn Devin and Ryan have both set a goal to sell $150 worth of popcorn by October 23. Devin is well on his way, Ryan is lagging a bit.
Today we had a follow up visit with the pediatric opthomologist to check on the cataracts in Devin's eyes. His vision test shows that he is still doing wonderfully, his "bad" eye was 20/15. There is really no change in the size of the cataracts so we are just going to wait and see. We scheduled a follow up appointment in April.
Report cards came out and Devin is doing great. He got all A's and B's with one C in spelling, his worst subject. Devin is a phonetic speller and tends to totally ignore that words need vowels in them. I normally put his words on flash cards, we go through them nightly and he writes them out 5 times each. Devin protests this system and fights every step of the way so I told him we would try his method...which is do nothing and hope some magical thing happens where it is transferred to his brain. He got two weeks of a failing grade on his spelling test so he is more willing to use my method, where he normally gets a B. I have spoken to his teacher about this ignoring vowel thing and she is looking into what type of testing and/or help we can get Devin with it. I am also going to contact the education person at Vandy for her suggestions on what the classroom teacher needs to do. It is not uncommon for kids who have gone through all that Devin has to develop a learning disability or have problems in a specific learning area. It could also be that Devin would have always been like this, it is hard to say for sure.
This weekend Devin is going to spend the night with one of his nurses, Miss Toni. She is going to take the boys (her boys and Devin) to a pumpkin patch. Devin is looking forward to going. Next weekend we have a Cub Scout camp out in Russellville, KY and the entire family will be going.
I will update again following our camping trip, where we will all be sporting day glo orange scarfs since it is muzzleloading season here.
Tuesday, September 14, 2004
Off Predinsone!
Devin is finally off the predinsone. He does have a slight rash, we are not sure if it is a form of GVH or something else. I noticed Iain has the same rash off and on so I tend to think it may be grass related. Just to be sure, Devin has a topical steriod cream to put on his rash and if it is not cleared up in about a week, I will give a call.
His prograf (anti rejection drug, for lack of a better layman term) level has been consistantly low, apparently. Since he has been without any symptoms, they have left it alone. With this rash, we have temporarily upped his dosage from 1.5 ml to 1.8 ml twice a day. On our next visit, we will go over things and see where we stand.
Other than that, Devin is doing well. He got his progress report from school and is making all A's and B's. He is still struggling a bit with reading and being a phonetic speller but overall, he is doing very well with school. Cub Scouts have started again and he is working towards his Bear rank.
Sunday, August 29, 2004
New Photos
I forgot to mention that I uploaded two pictures to his photo album. One is the picture of Devin and Kierynn sleeping. The other was taken on our trip out west. My computer, with all pictures, is currently in at the computer doctor. Once it is back, I will upload some more pictures.
Saturday, August 28, 2004
Walk For Wishes
We just got back from the Make A Wish Walk For Wishes event. Devin was the goodwill ambassador for the event. Before the walk started, he spoke to those participating about who he was, why he got a Wish, where he went and what he did. While Ryan and Kaity held a Make A Wish banner, Devin cut it to start the walk. On our way back from there, Devin was mentioned on the local radio station that was covering the event.
This was supposed to take place outside but rain forced it in. Devin walked for part of it and had fun talking to people and being a goofy kid inside the mall on a rainy Saturday morning.
We hope that everyone has a great weekend!
Tuesday, August 24, 2004
Another Taper
We finished the cellcept taper a few weeks ago, now we are about to begin the prenisdone taper. Devin was taking 5 mg every other day, now he will be taking 2.5 mg every other day.
While we were in the clinic, Miss Kelly, who was doing his blood work, mentioned that Devin was featured in the Nashville paper today. I looked online and sure enough, there it is. This is basically a rehash of the article that was in our local paper yesterday but still worth a look since the picture is a bit clearer.
Boy who has battled leukemia honored for Make-A-Wish event
We saw Dr. Frangoul today and Devin is doing very well. I think we had a record short visit, I wish all of our visits were so quick and stress free. I would love to see that everytime because that means nothing is going on.
Devin was actually disappointed that the appointment was so short since we were put in a room that had a Nintendo in it. He wanted to stay and play the game. We got out so quickly that Devin even made it back to school before lunch.
I added a few links over on the left side. They are other young people we know or know of who are battling various life threatening conditions. Barrett is a 1 yr old who lives in town with us. Connor, we have met in clinic and seen him around the hospital. Joshua and Devin were buddies in the hospital and exchanged notes through the nurses. Ryan is a tough little guy who lives near us. Justin we have never met but know of him through Joshua. Levi is a baby who I know of through an online community. All of the people I listed are so incredibly brave and awesome. I know you will be impressed with them as well, if you want to go read their pages.
I also added an email notification option. If you type in your email address, when I update this site, you will get an email to let you know that.
Devin's next appointment is in mid September so remember, no news is always good news!
Monday, August 23, 2004
The Media Star
Here is a link to a story that ran today in our local paper. The local tv station also interviewed Devin and a short segment ran this evening.
Disney World Wish Comes True for Boy with Leukemia
We have an appointment tomorrow morning so look for an update in the evening...assuming I get to it :)
Tuesday, August 17, 2004
No news, just a picture
Since Greg is currently deployed, the older kids like to sleep in the master bedroom and we take turns. Last night was Devin's turn and when I went in to look at him, Kierynn had crawled out of her bed to go snuggle with her older brother. I managed to get this picture and the flash didn't wake either of my sleeping beauties up.
Thursday, August 12, 2004
Reaction!
After our last clinic visit, we got the call that Devin was due to get IVIG once more. It had been some time since he got it but he needed it. When we scheduled it, I asked about premedicating him since he normally is premedicated before blood products. Technically, IVIG is a blood product but most kids don't have any reaction to it.
We got down there and into a room with a TV. Devin got set up with his gameboy, a video and I took Iain and Kierynn to the Girl Scout Store to pick up stuff. Devin was going to be there for a few hours and was not too interested in going to the Girl Scout Store anyway.
When any medication is given through the IV, it is usually begun at a slower rate to check for a reaction before it is turned up to full speed. Even going full speed, it takes time for the medication to go. We had about 5 minutes left when Devin complained that his forehead itched. I asked if that was the only place that was, he said yes and after looking him over, I concluded that it was just a forehead itch.
The IVIG finished, Miss Kelly removed his IV and we were free to go. Since I was rounding up shoes, games, kids and Devin was going through a basket of chips to bring a bag along, it was about 10 minutes after the IV was removed before we were finally ready to go.
As we were walking out the clinic doors, Devin was in front of me and I noticed he was scratching like a monkey. His back was to me and I asked him to come over to me so I could check for a reaction. As soon as he turned around, I could tell that he most certainly was having a reaction. The area around his eyes was bright red and there was a section around his mouth that was a bright red. His stomach and back were covered in hives. I let the nurse know, we got him into a room where an IV was put back in his other arm so he could be shot up with some benadryl.
Just a few minutes after getting a benadryl shot, the redness started to recede from him and the hives started to go away. We waited about 30 minutes to be sure and then we got to leave.
Add IVIG to his list of medications to premedicate before getting! Our next clinic visit is on the 24th of August. Remember, no news is always good news. Thanks for reading along!
Tuesday, August 10, 2004
School Starts!
School began today! It was only a half day though. Devin got to ride the bus to school and made his way down to the second grade hallway. He and Kaitlyn are in different classes this year but still across the hall from one another.
When he arrived back home, Devin reported that school was "okay" and that his teacher, Mrs. Faulk, seemed "nice".
Friday, July 30, 2004
Back from Vacation!
After the minor fiasco of a deleted post, I am back finally to update it.
Devin went to Camp Horizon and had a wonderful time. We got a CD full of pictures but since there are several hundred on there, I have not had the time to go through them all to find ones that feature Devin. I will get to it..eventually.
After Camp Horizon, it was time to gear up to go out on our vacation to Salt Lake City, Utah. Devin and all of the kids were great while we were on the road. Great for the most part, don't fool yourself thinking they were angels. We had fights and arguments along the way but considering we drove more than 1500 miles one way, they did wonderful.
While in Utah, we got to visit loads of family, Great Grandma, Uncles, Aunts, Cousins, Grandpa and more distantly related folks. We went to an amusement park, to Temple Square, to a Historic Farm and just kinda hung out.
We got back home the evening of July 27th. On the 29th, we were down at Vanderbilt for the premiere of Devin's video. This is the video that was film as a tour of some of the lesser known features of the hospital. The video is about 5 minutes long and came out very well. I have a lot of copies and some have already been mailed out to family members. Donna, who produced the video, said that it will be online at some point. During the premiere, there were photos taken and as soon I get copies, I will post some for everyone to see.
Today, the 30th, Devin had both a opthamologist appointment and his regular clinic visit.
We saw the pediatric opthamologist first, to see how bad his cataracts are and if anything needed to be done. As we already knew, the cataract on Devin's right eye is larger than the one on his left eye. The surprise was that Devin's vision is as good as it is. His right eye, the "bad" one, still has 20/30 vision, which would make him legal to drive still if he was of driving age. Since his vision is pretty much fine at this point, there is no reason to rush into surgery. At some point, it will be needed but for now, we are just going to wait and see. We have a return appointment in October to see if the cataracts have changed any.
After we changed parking garages since we had to go from one building to another, we dashed inside to meet up with Donna and Monroe Carroll. Mr. Carroll is the gentleman who the new hospital is named for. He has seen Devin in several of the videos and had been wanting to meet Devin but our schedules just never matched up. Today he was in the hospital with some nuns who were donating knitted items for premature babies. Along with the sisters, Mrs. Carroll was with him as well. He and Devin chatted for a few moments, Devin got some shirts and Donna took some photos. He is a very nice gentleman who seemed to enjoy meeting Devin.
The clinic visit, while incredibly long while waiting, was uneventful. Devin is about the same as far as weight and everything is looking good. We are continuing to taper down one of his drugs and the 11th of August will be his last day taking it. Once that drug is finished, we will begin to taper his other meds.
Thanks for being patient during the long wait for this!
Monday, June 14, 2004
100% Donor!
That is the news for the day here. We got a call this afternoon from Becky, the transplant nurse. Devin's bone marrow came back at 100% donor. This means that his body is still producing Ryan's healthy bone marrow. This is just simply FANTASTIC news. We are thrilled.
Devin is off at Camp Horizon this week and will be back home on Friday. After I worm details out of him, I will share what he did during the week.
Wednesday, June 09, 2004
Woo hoo!!
We are now one year post-transplant!!There is a new picture of Devin, taken on this wonderful anniversary, in his album. There is a link on the left.
Tuesday, June 01, 2004
One Year Later
Okay, so we are actually a week off of our year date but close enough. It has been one year since Devin's second bone marrow transplant so it was time for his big work up.
Since we were up at Vandy on Friday, shooting a video, we did a few of the tests then. Devin had a chest x-ray, some kind of bone x-ray, some pulmonary tests and a cardio echogram. So far, the results on everything look fine.
Today we had the big bone marrow draw, a skin biopsy, blood work and a bone density scan for a study. Devin was pleased that rather than getting versed and morphine for the bone marrow, he got his beloved white medicine. He still reacts when the bone marrow is aspirated but not nearly the way he does with versed and morphine.
Dr Frangoul is very pleased with Devin's continued good progress. I would say that we are cautiously pleased as well. Having been bitten once while getting complacent about Devin's progress, we tend to be a little more reserved although we are also so very thankful for how well he is doing.
Devin has cataracts in both eyes, something that was not totally unexpected. His right eye is larger than his left eye. I got to use the eye light to look into his eyes and see them myself. We are getting an appointment with a pediatric opthamologist who will follow Devin and moniter how his eyes are. It is too soon to say what will happen but surgery to remove them at some point in the future is a possibility.
While Devin was getting his blood drawn, I happened to be standing near his hip and the angle was just right for me to see into his mouth. The boy has teeth growing out of the roof of his mouth! He has a baby tooth next to his front teeth that is a bit loose and has been just a bit loose for some time. The adult tooth is not pushing it out of the way because it is about 1/2" behind it, growing in the roof of his mouth. On the other side of his mouth, that baby tooth has fallen out long ago but no tooth has replaced it. Again, I now know why, because it is growing about 1/2" behind. Devin can't get orthodontic work done at the moment so there is not much that can be done. I am going to get him an appointment with his dentist to look at the situation and see if the one baby tooth needs to be removed or just leave it alone. Once Devin can see an orthodonist (probably in 6 months or so), then we will go see him.
We had a bone density scan today, part of a study looking at the effects of it with children who have had a bone marrow transplant or it could be children who have had radiation. It has been more than a year since we were told about the study so I don't recall exactly why they are looking at it. In any event, it is a painless scan that can help gather information so we agreed. We arrived down at Radiology for our appointment and the receptionist told us that it was not for 2 more days. What?!!? After making several calls, trying to track down paperwork and some frustration on my end, we were able to have the scan done after all.
Donna, the lady who filmed the videos for the new opening, called and wanted Devin to take part in a new video. Devin spent the day down at Vanderbilt on Friday with a film crew, Champ (the Vandy mascot) and Donna shooting an informational video. This video will be a few minutes long and will show patients and their parents around the hospital. Devin really enjoyed filming. At one point, the siblings came down to be "extras" in the background. Champ, the mascot, also works with the Nashville Sounds, a baseball team. He offered to get us tickets. Wasn't that sweet of him?
I have uploaded some more pictures in the Online Photo Album They are in the section for our trip and I am about to add some to Devin's album as well.
Next week Devin heads off for Camp Horizon, an American Cancer Society camp for kids with cancer. He went in 2002 and loved it. He has been looking forward to going again.
I should have some results of all his tests by later in the week and will post them as they become available.
Monday, May 31, 2004
Finally! Photos!
Yes, I finally uploaded some pictures of our Make A Wish trip that we took back in January. Keep in mind that this is a work in progress and new photos will be added as I edit and upload them.
There is a link to the album over on the left.
Wednesday, May 12, 2004
Doing Great Still!
Devin has his visit today down at Vanderbilt. He has gained a pound in the past three weeks, which is great! He is doing really well overall.
His hands and arms have a rash on them right now, from exposure to the sun. Even though we are diligent with putting sunblock on, keeping him in shade during the hot part of the day, he still is getting too much sun. I got him a pair of batting gloves to wear out and plan to make some mesh type sleeves that can go on a t-shirt to keep his arms covered but still be somewhat cool. This also means no shorts for Devin....which is not fun when you consider our weather and humidity level. He can swim in the pool....just not between about 11 am and 3 pm, to avoid the hottest part of the day. This stinks for him but his other option is to stay inside all the time so he is pretty accepting of the few restrictions he does have.
His prednisone has come down again, he is down to 10 mg every other day. We are swiftly approaching our one year from transplant date so his next appointment will be the big work up where everything is looked at. It promises to be a long day!
There is a great group of ladies on the internet called Quilts of Love They make virtual quilts for children. They have made one for Devin! Devin's Quilt I will be placing a permanent link over on the left as well.
The weekend of April 30-May 2, we went camping. Devin and the rest of the gang stayed in tents during a Cub Scout Pack camp out. The weather was very nice until Saturday night, when we got pouring rain. We stayed out in it and had fun playing cards in our tent. While on the camp out, Devin earned his World Conservation Patch, which he will recieve on May 23 when he crosses over to become a Bear Cub Scout.
I have some updated pictures and plan to get some up in the next few days so be sure to check back in.
Tuesday, April 20, 2004
Going Great!
Devin had an appointment today and is doing just wonderfully. His blood pressure remains down, his weight is up and his overall progress is just great.
We are starting to taper down his steriods. This is the beginning of the tapering of his medications, a process that will take about 9 months.
We stopped over at the floor to see Miss Yolanda, who came out to hug on him. The new unit is closed to non-patients under the age of 16 so when we visit, we call and the nurses come out.
After we got back home, Devin went to school for a few hours before being pulled out early to go see another one of his nurses, Miss Tony. Miss Tony no longer works at Vanderbilt but was in town today. She has not seen him since August, when he was still in the hospital and was just so suprised at how good he looks.
Devin brought home his first folder of work from school and is maintaining his grades just fine. He does have to study a bit more than his sister does but he actually gets better grades. She tends to rush while he takes his time.
The next big thing we have coming up is on Saturday. Devin is taking part in the Cub Scout Cubmobile race. Later that evening, Devin, Nicholas and Ryan will be getting baptized. We had to wait until Devin could attend Church again to have this done and they are looking forward to it. We have everything planned and will be doing the final steps on Friday.
Look for an update (and maybe pictures) early next week. Our next appointment is on May 11.
Tuesday, April 13, 2004
Snow!
We woke up to snow today and it stayed snowing all day long. I think we got about 3" total and the schools closed early. This is just crazy weather!
Devin began school again on Monday. After a few minor hitches in making sure the correct paperwork was on hand, he went off to class shortly after 9 am. He is really enjoying being back at school.
We got back spring school pictures. You can take a peek at them Click Here
Devin had Scouts tonight, we were going to work on the car for the Cubmobile race next week but the weather cancelled that out. Instead, the boys played a bunch of games and then had snack.
Our Pharmacy gave us some grief about one of Devin's medication, said they can't get it and we would just have to find someplace that would. After talking to our case manager at the hospital there, we can pick up the medication tomorrow. Seems they were able to get it after all.
We have an appointment next week so look for an update around then!
Sunday, April 11, 2004
Hapy Easter!
We hope that everyone had a great holiday. We are currently waiting on dinner.
Devin and the rest of the gang woke up early and raced down to find baskets. Their egg hunt had to wait until we got back from Church. Today was the first time in well over a year that Devin got to stay for his class. He, along with the rest of the kids in Primary, got little goodies from their teachers. After lunch, 5 of the kids raced around the backyard finding various plastic eggs and hardboiled eggs.
While we were at Church, Iain was home with Dad since Iain was running a fever. He helped himself to assorted treats in baskets that were not his own while Dad was otherwise engaged. Devin boo hooed and was very upset that Iain ate his Peeps
Tomorrow is the big day, Devin gets to go back to school! It may take us more than a few minutes since I am not sure if the school will accept a faxed letter from Dr Frangoul saying Devin can not have vaccines or if we will have to get it transferred to a green Tennessee Vaccine Record. We will find out tomorrow!
Thursday, April 08, 2004
Housekeeping
I just realized that some of the links over on the left were still being hosted on an expired domain. I have transferred those pages so they are current. I still need to go in and update the links on the individual pages but the ones on the left are correct. I had moved them from where they are on my hard drive and it took some searching to find the pages.
Devin is on spring break right now with the rest of the kids. He is so excited to be going back to school on Monday. I will be driving him and picking him up rather than have him ride the bus.
Tuesday, March 30, 2004
Another One Bites The Dust!
Another medication, that is! Devin is off potassium now. They will check it next visit to be sure but for now, he doesn't have that to take any more.
Our clinic visit was long today, a lot of waiting around but that is not that abnormal. We had company while we were waiting. Donna, the lady who made the videos for the new hospital, came up to visit Devin. Donna got some pictures of her and Devin.
We had a hard time getting blood from Devin today. He ended up getting 4 sticks before a good vein was found. He howled and carried on and eventually got the freezy spray..something he normally doesn't want.
On Sunday, Devin fell off his bicycle and hurt his ankle. Despite x-rays that show there is nothing wrong with him other than a bruise, he insists on acting as if a bone is sticking out and in horrible pain. He hops around and crawls through the house. I let him ride in the stroller up to the clinic rather than listen to his moans, whimpers and gasps trying to walk. He has turned into such a boob about pain but I guess with all he puts up with, it is a small thing.
We got official approval to let Devin go back to school for the last few weeks of school! He will go with some hand washing stuff to make sure he washes frequently. His classroom teacher, Mrs. Camp, is aware of the situation and will make sure that if any child is sick in the class, we know about it immediately.
Last night was a Pack Meeting for Scouts and Devin got quite a few awards. He got his Bowling belt loop, Music belt loop, Collection belt loop and Fishing belt loop. He also got 1 gold arrow point and 2 silver arrow points. Ryan got his Webelo rank and his Traveler pin. Ryan also got his Physical Fitness pin and belt loop. Belt Loops are fairly easy to get and once they are Webelos, they do the harder stuff.
We have three more weeks before our next clinic visit.
Thursday, March 25, 2004
Nothing Much
There has not been too much to report on this end. Devin and the two older brothers took part in their Cub Scout Pack Pinewood Derby over the weekened. Devin's car came in 4th place overall for the Wolves and 1st place for his Den. Nicholas and Ryan came in 3rd place and 4th place overall for the Webelos. Devin had a great time racing and was very pleased with the finish. We have an appointment next week and I will update then as well.
I weighed Devin this afternoon, he is 55 lbs. To give a comparison against the others in the photo below, Kaitlyn (in green) weighs 47 lbs, Ryan (behind the baby) weighs 67 lbs, Nicholas (behind Devin) weighs 68 lbs and Iain (looking away) weighs 32 lbs. I have no clue what Kierynn weighs but under 20 lbs. This picture was taken this beautiful afternoon when Kaitlyn, Nicholas and Ryan got off the school bus. I just sat them down on the front yard to take it.
Friday, March 12, 2004
Hidden Talents
Devin demonstrated an amazing talent the other night so we had to come and share it with you. Here is a picture of the pills he takes twice a day (except for 1 he only takes twice a week) The penny is there for a size comparison.
Devin normally takes his pills out of the little cup one by one and swallows them. The other night, he slugged back all FIFTEEN at one time, took a few swallows of water and then smiled at me like it was no big deal!
I just had to share this amazing talent since I don't think I could do it (not that I would want to either). What a silly boy!
Tuesday, March 09, 2004
Gaining Weight!
We had weighed Devin at home and while our scale reflected that he had gained weight, we were not sure what the clinic scale would reflect. Dr Frangoul was just as pleased as we were that our dude had gained weight!
Devin is looking fantastic. Bad mom wasn't thinking and let him go outside without sunscreen and his hands show it. Devin has to have sunscreen and a hat on at all times while outside. The radiation and skin GVH has made him very sensitive to the sun and we don't want a flare up of any kind.
We stopped his blood pressure medication to see if it was the medication keeping his pressure low or if it was actually low. His blood pressure was just dandy today so we can stop giving the Norvasc to him. Devin had also been getting a monthly dose of Pentamamine via IV. That has now been changed to an oral dose of Bactrim twice a week. His Prednisone has also been lowered slightly. So although he is still taking 10 different medications, it is getting to be less and not as frequently.
While we were up there, one of his nurses, Miss Yo, came over to the clinic to see Devin. Devin is always happy to see Miss Yolanda and she brought him a Beanie Bear.
Report cards came out and Devin got all A's and 1 B. He is just doing so great this year. I ran into his first grade teacher from last year, Ms Spiva, and told her how great he is doing. We are going to make an effort to get him over to Northeast one of these days so he can say hello to her.
The weather is warming up and we are going to be getting out the bike soon to resume our trips around the block....with sunscreen on!
Our next appointment is on March 30th. No news is always good news!
Wednesday, February 25, 2004
Wolf Cub!
Monday evening was the Cub Scout Blue and Gold dinner and Devin got his Wolf rank. Below is a picture of the newest Wolf Cub of Den 5, Pack 566.
Tuesday, we went down to Vanderbilt for a blood draw to check his Prograf level. While we were there, we got to peek in the doors of the new unit. The clinic has moved over to the new hospital. It is a gorgeous place and I sincerely hope that we are never able to actual go up on the ward to look around. The only way we can is if we are admitted and no one wants that.
Devin was able to see Miss Linda while he up there. As always, no news is good news on our end!
Sunday, February 22, 2004
Three years ago
It was three years ago when I had an appointment for Devin since I was concerned about his lack of energy and eating. All the kids had been sick but it just lingered with Devin. Something was just off with him although there was nothing really that was the problem. It was everything and nothing.
I took him in for the appointment and a routine exam showed nothing was wrong. The doctor suggested perhaps it was seasonal allergies that was the problem. I expressed concern about Devin's color so a blood test was drawn. A heart murmer did show up so we made an appointment with a cardiologist. I took Devin home, not very confident in the outcome because it just was off...something was wrong with him and I knew it.
I got a phone call a few hours later asking me to take him to Vanderbilt for a blood transfusion. I was asked to take him to the Pediatric Hemoc/Oncology Clinic. I knew what those words meant but it didn't click in my brain...why would it?
I got Devin down to Vanderbilt where Dr Shankar and Dr Ho examined him and took more blood. Devin was such a brave little guy, just turned 5 years old, though all of this. He sat in the back and watched a "Clifford" tape while Dr Shankar talked to me. Even after being asked about a history of childhood cancer in our family, nothing prepared me for her next words. I can still see her saying them too me.
"We think Devin has leukemia."
Those words will be forever etched in my mind. I think those are the worst words I have ever had spoken to me ever in my life. They started Devin and this family down such a road three years ago.
There have been low points and there have been high points but overall, we feel that we have been truly blessed by so many wonderful people and events.
Miss Linda was Devin's nurse that evening. To this day, Miss Linda is one of his favorite nurses and he talks about her often.
What a three years this has been!
Tuesday, February 17, 2004
Gone! It's All Gone!
Not quite but the NG tube is HISTORY folks! We mosied down to Nashville today for Devin's appointment. Of course, the main thing on his mind was the NG tube since we got the hint that it may come out.
Both Devin and I cheered when he weighed in at 49 lbs, up from his last visit and he was 49.5 inches tall. The first question Devin had was "Can I take the tube out?"
Luckily, Dr Frangoul gave the thumbs up and almost before the sentence was finished, Devin had the tube out. I say luckily since Devin had been practicing his fake crying in case Dr Frangoul said no...silly boy!
Since the tube is gone, we asked to switch some medications over to pill form. His cellcept and prograf are still liquid and while not tasty, he said he can deal with it twice a day.
His blood pressure has been doing well so five days before his next appointment, we will stop his medication to see if it is still doing fine. If it is, then we can dump the Norvasc.
Devin is doing just great, jumping around and acting like a goofball often. Next week, at the monthly Pack meeting, he will be getting his Wolf Badge. He is a little bummed that he won't be going to Boy Scout Day Camp this year since it is being held the same time as Camp Horizon, the oncology camp. He missed out on Horizon last year and has been eagerly looking forward to this year.
The other piece of good news is that we are now going to every three weeks between visits!! Woo hoo!
There is a little spot on Devin's face where the tape tore skin when he removed his NG tube. Once that heals, we will get a new picture of him sans tube and get it up on the site.
Also, I have not forgotten vacation photos, I just have not gotten to it yet. Here is a small sample of one of them, to see a larger version, just click the picture.
Tuesday, February 03, 2004
Back to the Clinic
Despite getting in very late last night, we were back up early to make our trek down to Nashville for Devin's clinic appointment.
He has lost a little bit of weight since his last appointment. Dr Frangoul wants us to really push his feeds and beef him up. If he has gained weight by his next appointment, we will discuss pulling his NG tube to see what he does.
His counts are perfect and Devin is looking fantastic. We brought along a picture of us on Splash Mountain and Devin told everyone about the great time he had in Florida.
We were able to drop one of his medications so now he is only taking: Acyclovir, Magnesium with protein, Norvasc, Vefend, Amoxicillian, Prednisone, Potassium, Cellcept, Prevacid and Prograf. His Prednisone is every other day and we won't mess with that at all until he gets to his one year mark in June. We are slowly but surely getting there!
After Devin's appointment, we walked over to the floor so he could see his nurses. Miss Yolanda was there and she hugged on him while he told her about his trip.
So everything is looking good, we are trying to get some meat on his bones before his appointment on the 17th.
Monday, February 02, 2004
Final Day in Florida
We made sure that we had everything packed up the night before so we could leave right after breakfast.
Of course, the kids had to ride the carousel a few more times and Disney had some characters running around. Alice from Alice in Wonderland was there so the kids got her to sign their autograph books. We also got pictures of them with Goofy and Pluto.
After breakfast, we went to check out. In our checkout packet was a photo taken of the whole family with Micky and Minnie. We also got a one year passport that is good in many themeparks for free admission for the entire family. We made a donation and got the book written by the gentleman who founded Give Kids the World. Devin had written his name on a star that was placed on the ceiling of the castle. He got a star to take home to remind him of that. The kids were sad to leave, they wanted to stay for another month!
I forgot to mention earlier that each day, one of the Village volunteers comes into the villa and leaves a newsletter that details the happenings for the day, the menu and other information. It lists what is going on, what movie will be played in the theater and things like that. Along with the newsletter, they also leave little presents for the kids. We got videos, cars, stuffed animals and little candies. The kids loved to go back to the villa to see what surprise was waiting for them.
Our final park visit was Disney's Animal Kingdom. Iain really liked this park since he could ride and go into almost everything rather than be stuck in the stroller.
The first thing we did, after getting another primo parking spot that had us right at the front gate, was head to "It's Tough to Be A Bug". This is a 3-D show based on It's A Bug's Life. From there, we headed to the Africa section to take a 2 week safari through a game preserve. We saw lions, elephants, hippos, giraffes, rhinos, birds...all kinds of animals while on the little trek. Iain liked to see the elephants.
We headed over to the Lion King show and managed to get some front row seats. The show is a combination of a lot of live action dancing, singing and acrobats combined with large characters. Kierynn watched the entire show with wide eyes, she really liked it. It was an excellent show.
The kids wanted to go over to the Dino-Land area so we walked over there. Iain fell asleep and slept for a few hours while Dad sat and talked to other Dad's watching sleeping kids. The other kids and Mom went on many rides. Nicholas, Kaity and Ryan opted to go on the Kali River Rapids ride while Mom and Devin opted to stay dry. Everyone made there way over to the Asia section and went on a trail where we saw gorillas and tigers.
It was time for the parade so we watched the parade. Since we had to be at the airport by 6:30, we left the park after the parade.
One major gripe from Mom is that there are NO adult sized shirts with Simba on it. No where. Cub Simba is my favorite character and I have a 10 year old Simba watch that is on its last legs. I was bummed to not find a Simba shirt.
As we left Animal Kingdom, Nicholas announced that he wanted to spend his money on an alligator he saw at GatorLand yesterday. We had to go right past there so we thought we would make it. We had not counted on traffic. The gift shop closed at 5:30 pm and at 5:28 pm, we were almost 3 miles away in standstill traffic. We took the chance and pulled up. A man was letting people out of the gift shop and after explaining the situation, Nicholas and Dad went in to get the alligator. Nicholas was quite pleased to get his 2 foot long alligator.
We turned in our rental car and then waited for our plane. While we waited, Dad got us pizza from a airport pizza stand. The flight was only half full so we were able to spread out where each of the kids got a window seat. Iain was very tired by this point but didn't want to sleep.
A limo took us back to our van, which has also been washed and cleaned while we were gone.
A very tired but happy crew finally made it home to happy animals just after 11 pm.
Sunday, February 01, 2004
Blah!
Our day started off very early by a knock on the door at 1:30 am by Devin. He had gotten sick and his NG tube was out. I asked if he wanted me to wait until morning to put it back in but he was a trooper and asked me to do it right away.
By morning, Devin was not feeling any better but had no fever at all. We were pretty sure that he had gotten whatever Kierynn had a few days prior but were keeping a close eye on him and ready to call back to the clinic if he got any worse.
Since he was feeling badly, that cancelled out our plans for the day. The rest of the family went over to breakfast at the Gingerbread House and then wandered around the Village a little bit.
Mom, Nicholas and Kaity decided to go fishing and after a few hours and 2 slices of bread, we managed to catch 9 fish.
Following lunch, Dad decided to get the kids out of the house to give Kierynn and Devin a chance to get some sleep. Mom stayed at the villa with them while Dad took the others to a nearby attraction.
GatorLand is located less than 10 miles from where we were staying.
It was a pretty neat park and everyone enjoyed it. Nicholas and Ryan got into a fight over a viewing station but overall, they behaved. We did get a picture of Kaity with a large boa around her neck and the boys holding a 3 ft alligator. There was an alligator that was rescued from the Tampa area, they called it Doggone. This gator developed a taste for dogs before he was captured. There were also a few salt water crocodiles and various other animals, including llamas.
Devin was feeling well enough when they got back to pout a bit over the fact that he didn't go to GatorLand with them. He went back to lay down while we went to dinner.
After dinner the kids wanted to go over to the SuperBowl party that was being held over at Julie's Safari Theater. Kaity had a spider and spiderweb painted on her face. The girls doing the painting wanted to give her a heart, a flower or something girly but she wanted a spider. Ryan got a big orange T for UT on his face.
The mayor of GKTW Village is Mayor Clayton, a 6 foot rabbit. He was elected Mayor for life and one of the benefits of staying here is to have Mayor Clayton tuck you into bed. We were the only tuck in for the evening so the Mayor's assistant called to ask if they could come early.
We got the kids back from the party and ready for Mayor Clayton. Mayor Clayton was dressed in his nightshirt. He signed the kids autograph books and headed back to the bedroom to tuck them in. It started out nicely, with the Mayor fluffing pillows but then it got silly. Rather than tucking them in, he pulled all their bedsheets and blankets off before throwing them back onto the kids. Sitting on the edge of the bed, he bounced as high as he could. The kids giggled hysterically while this was all going on. Kaity had socks on so Mayor Clayton pulled them off, reeling from the smell, and tossed them into the bathroom. Iain had been sleeping when this all began but he woke up and enjoyed watching everyone being tucked it. Mayor Clayton tucked all 5 kids into bed and then left.
Devin was feeling great by this point and had fun with the rest of them. He drank some Sprite and said he felt a lot better.
We got the kids settled back down and headed off to bed.
Saturday, January 31, 2004
Rain, Rain
Beautiful sunny Florida had a really yucky day today. It started out nice enough and turned into a miserable, wet, cold day.
This morning, we decided to do something different for breakfast. Since the Ice Cream Palace serves ice cream all the time, the kids wanted ice cream for breakfast. We went over there where they had banana splits, ice cream sandwiches and cones for breakfast. I snuck into Gingerbread House for some real food while they rode the carousel.
Since we wanted to make sure to catch a certain parade over at the Magic Kindgom later in the day, we went over to Epcot first thing.
After getting into the park, the kids wanted to make a beeline to Test Track. We rode that and then headed over to Mission:Space.
Mission: Space has to be the coolest ride Disney has right now. Words just don't describe it but after we got off, we made Dad go back and ride it again with everyone. Even Dad agreed that it was a nifty ride.
The weather was not looking great so we headed back over to the Magic Kingdom. This meant 2 monorail rides and some more walking to get over there.
Once we were back in the Magic Kingdom, the kids went right to Space Mountain, Buzz Lightyear and everything in Tomorrow Land. Iain rode on the Indy Car race ride with Mom and tried to drive as he was exiting the car. The car Nicholas and Kaity were in broke down and we had a few minutes of waiting until an attendant came to fix it and let them continue on their way.
The entire family went on a little tram ride around Tomorrow Land and it was beginning to rain. We made our way across the park to go to Splash Mountain and Thunder Mountain Railroad. After the 3 pm parade, the rain was really coming down so we all got rain ponchos to wear.
On our way to Fantasy Land, we decided to go through Haunted Mansion again. We asked Iain if he wanted to go on the ghost ride and he agreed. As we approached it and he saw the hearse, he put on the brakes and yelled "no, no, no!" so we had to take him back to Dad and Kierynn.
Since Iain had a fit while we were in Haunted Mansion, we went to "It's A Small World" next for him. Could that ride be any longer or more painful?? Iain did enoy it but I think Disney should sell t-shirts that say "I survived 'It's A Small World'!". Dad took Iain on the Peter Pan ride again as well.
We still had 90 minutes before the parade we wanted to see was going to begin but the rain was ust making things miserable. Everyone was wanting to crowd under what little shelter there was and the places to eat were packed. Even though we specifically came today to see the parade in the evening, we gave up and went on back to the villa. Everyone told us when the rain starts, people clear out of the park but we sure saw NO evidence of this.
Naturally, the rain made many things malfunction and we had to take the ferry back to the transfer station since the monorail was not working. The monorail was the only way to get back to Epcot but luckily it was working again by the time we got to the transfer station.
One thing that is not mentioned in anything I have seen about Disney's Magic Kingdom is the darn seagulls. They are everywhere and they are aggressive. On more than one occasion, we saw seagulls dive in and snatch food right out of people's hands as they were trying to eat. Then the birds would beat them with their wings getting away. I was talking to a park employee who said that they will swoop down and take things off trays as you come out of a food place. I saw one bird make off with part of a turkey leg and about 12 of his buddies took off in hot pursuit. Iain had a grand time chasing the birds but they are really annoying. If you go down there, eat inside!
Traffic back to the Village was very heavy but we made it in time to go to the Gingerbread House for dinner and the nightly visit to the Ice Cream Palace.
Friday, January 30, 2004
Busy Day
We had quite a full day today. As has been our practice, we got up and headed to breakfast over at the Gingerbread House. The kids stopped at the carousel to ride before we went in, Iain picking his favorite lion to ride. We also rode again on our way back to the villa after breakfast.
Our first destination today was Sea World. Devin being with Give Kids the World had gotten us free parking in all the other parks, at Sea World, we got disabled parking so we didn't have the 12 mile hike/tram ride from where we parked to get to the gates of the park.
The first place we went to was over to the Dolphin Cove, to feed the dolphins. It was almost feeding time and Mom stood in line to get some stinky little fish to feed to the dolphins. All the kids fed the dolphins and we got a really great picture of Devin feeding one while Nicholas is touching another one. Iain was very content to run around but didn't want to get too close to where the dolphins were.
We stopped by the Sting Ray pool to look at all of them and to see the sting ray pups in their special little pool. In looking at the time (and park map), we decided to go clear across to the other side of the park to catch the Shamu show.
Even though the show was still 45 minutes from starting, a crowd had already gathered. We had come prepared and had our rain ponchos so we could sit in the splash zone. Greg opted to sit up further with Kierynn so she didn't get soaked. We made our way down to our seats and managed to get about 20 feet away from where the whales beach themselves near the trainers. There was a little interactive quiz going on up on the large screen prior to the show. Iain loved to see the whales and it was a very cool show. We were somewhat disappointed that all the splashing was missing us. The end of the show rolled around and the kids complained that they were still dry. We started to take off our rain ponchos when we saw a whale coming around to splash everyone. I managed to get my poncho up to avoid being drenched. I put it down again just in time for a SECOND whale to totally soak Iain and me! I have a picture of Iain grinning, he loved it!
After the show, we went over by the Anheuser-Busch Clydesdales Horses. The kids, minus a screaming Iain who was angry, got a picture taken standing by one of them named Kerry. There was a foal named Connie who was the same age as Kierynn but of course, much, much larger.
Since Sea World also had rides, the kids were chomping to get over to that area to ride them. The big roller coaster is called Kraken and Ryan just barely made the height requirement. They put a tag on his arm to show he had been checked but he was rechecked before getting on the ride again. Dad rode with Ryan. There was also a water ride, Journey to Atlantis. At one point, there is no water and it has a roller coaster kind of action. It was a pretty neat ride with a 60 ft drop. Greg managed to get film of us coming down the drop.
While waiting for us to come down, a woman came to stand near Greg and the two smaller kids. Even though all the parks are non-smoking, she chose to light up. Iain leaned out of his stoller and said in a very loud and insistant voice "No moke!" She looked at him, put it out and moved away. Go Iain!
We stopped by to see the penguins. Iain would say at regular intervals during the stay "Peeyew!" I guess he didn't like the smell of the penguin area. Kierynn seemed to enjoy watching them play and swim.
There is a shark exhibit where you go on a people mover through a long clear tunnel where sharks are swimming all around you. The kids thought it was nifty and Iain would say in a hushed voice "Shark!"
Since we had plans for later in the evening, we decided to cut short our visit (and it was starting to rain) and head back to the Village.
Once we were there, the kids wanted to fish for a little bit. We fished for about an hour and caught 9 fish between us. Devin, again, was impatient and went back to the villa in a huff after he didn't immediately catch a fish.
Everyone got baths/showers and we got ready to head out to dinner. Give Kids the World has additional tickets to a few attractions and we chose to go to dinner at Medieval Times
We got seated right down near the area where the show would be and we were rooting for the Red Knight. The show and dinner lasted almost 2 hours and was really cool. The kids liked to see the jousting and horses. At one point, our Knight threw a flower to Kaity. Snotty big brother Ryan intercepted it and refused to give it to her. Kaity got a curly hair ribbon on the way out and so was not too upset about not getting her flower from the Red Knight. The meal was pretty good too and you have to eat it with no forks, knives or spoons (although they will bring the kids a spoon for the soup) About half way through the show, Iain and Kierynn both fell asleep. We were surprised when the King stood up to recognize some people and
said "We welcome the Proctor family with Give Kids the World" Our Knight was "killed" in combat and didn't "win".
Medieval Times was less than 2 miles from the village so after we got back, we headed right off to bed.
Thursday, January 29, 2004
Universal
After heading over to the Gingerbread House for breakfast and a carousel ride, we headed over to Amberville Train Station at the villiage. Devin got to make a magic pillow on a big machine. We then went over to Julie's Safari Theater and had a group photo taken with Micky and Minnie. Also roaming the Village was Goofy, Belle and Pluto. They were riding the carousel when we went to load up for our day trip out. It was a toss up between going to Sea World and Universal and the weather forecast convinced us today would be better spent at Universal.
On the way there, Kierynn got sick. This is the child that never ever spits up or is sick. She threw up everything she had eaten in the last week and I had no change of clothes for her. As soon as we parked in the Jurassic Park-ing lot, we went in search of some clothes for the smelly little girl.
Before you get into either park, there are all kinds of shops. We found a store called Fresh Produce and $40 later, we had 2 outfits for Kierynn. Good thing they were marked 50% off! We got her all cleaned up and headed towards the first of the two Universal Parks we planned to visit.
We went to Universal Studios first. If you are a fan of movies, this is the park for you. We went to a few shows and looked around but after a short time, the kids were itching to go over to where there were roller coasters and rides.
It was just a short walk over to the next Universal Park, Islands of Adventures.
Iain really liked the Dr Suess carousel but the bigger kids were chomping to get over to the Jurassic Park area. After some walking (which would be what we did a whole LOT of all week), we were over at the Jurassic Park area.
The water ride was a big hit with the kids. You ride through a water river in a boat, seeing dinosaurs and then go inside. Just as a giant T-Rex bends down to eat you, you plunge down an 85ft drop! We didn't get wet at all though, which the kids thought was a bummer.
They were disappointed to discover there were no real Jurassic Park toys available to buy, they had looked forward to replacing some dinosaurs they had gotten years ago.
We also went over to another ride, Popeye and Bluto's Bilge Rat Barge. It should have given us a clue when people getting on the ride were taking off shoes and socks and people getting off the ride were dripping wet. We went merrily on the ride and proceeded to get DRENCHED! Devin was most unhappy at being totally wet and wailed and howled the entire ride. We got him into his jacket and put a blanket over him. He continued to complain until he dried out.
Ryan, our resident daredevil, wanted to ride on Doctor Doom's Freefall. This ride zips you up into the air 150 feet and then drops you. Devin wanted to ride too but was not tall enough. I walked Ryan up and since he said he was ok to go by himself, Mom sat this one out (Although had he asked me, I would have rode it with him!) He came off with a huge grin and we went over to the Hulk Rollercoaster. Again, Nicholas said nope so Dad and Ryan rode the coaster that twisted and took them upside down. Iain was happy that he got to go on an X-Men ride that was very similiar to the Mad Hatter ride at Disney.
To end our day at Islands of Adventures, we made our way back to the Flying Unicorn roller coaster. Ryan wanted to ride Dueling Dragons roller coaster but he was about 1/2 inch too short.
Iain was tall enough for the Flying Unicorn and we rode it three times in a row. Iain sat next to Mom and on the drops and twists, you could hear a little voice saying "Whee!" He really likes the roller coasters.
It was a tired but happy crew who made their way back out the gates and back to the GKTW villiage. We had dinner at the Gingerbread House once we got back. After dinner, there was a horse and carriage giving rides since tonight was Christmas in the Village. The kids rode around with the horse, sleigh bells ringing. We went over to the Castle to visit with Santa and Mrs Claus. Iain even went to give Santa a high five...what a far cry from the screams of Christmas. Each of the kids got to pick a gift out too. Nicholas, Ryan and Devin chose a Beanie Baby, Kaity got a stuffed Christmas rocking horse, Iain got a wooden truck and Kierynn has a Teeny Beany worm. We visited the Ice Cream Palace before going back to our villa and called it a night.
Wednesday, January 28, 2004
Disney's Magic Kingdom
We got up early and headed over to a villa near us where there was horses to ride. Kaity had been looking forward to this and was thrilled to see a horse and a pony there. All the kids, including Iain, went twice around a little track. Kierynn sat on the pony for a photo op but she wasn't too happy about it.
After we finished riding, we went to the Gingerbread House to get some breakfast. There was a clown in there making balloon animals for the kids and they each got a plastic spoon with some chocolate kisses on it during breakfast. After we ate, the kids rode the carousel and then we headed off to our first destination.
After passing through a checkpoint to have our bags looked through, we were in and got a stroller for Iain. We should have gotten a double stroller but we learned our lesson and got a double one each time after.
Right off the bat, there were some characters inside the park so we got the autograph books out to get them signed. Devin's GKTW button allowed him (and his siblings) to go right up without standing in line. Although we had the button, we tried not to use it if there was a short line.
The kids were very excited to see everything and we just wandered around a bit before deciding where to go and what to do.
Greg sat out with Kierynn and Iain, who were too small to ride most things, while Denise took the kids on the rides. We rode everything there was just about.
We did go through Haunted Mansion with Iain and Kierynn and Iain was certainly less than pleased. He never screamed or got upset but he did cling tightly to Mom and not want to sit down in his seat. Kierynn just looked around and didn't seem to really be bothered by much.
The Dumbo ride was a big hit with Iain and he liked to make Dumbo go up and down. Peter Pan was another ride that Iain really liked. The older kids tolerated us going on the "baby" rides every now and again since they rode them too. Iain turned out to be a little daredevil and loved the Goofy Barnstormer roller coaster.
The big hits of the day were Splash Mountain, where we didn't hardly get damp, Thunder Mountain Railroad and Space Mountain.
We topped the day off by watching the fireworks over the castle. Devin did great the entire day, running around and playing. After about 7 hours, he started to tire and we got a double stroller so he could ride.
He got a companion Minnie Mouse to keep his Mickey Mouse we got at check in company.
Since we stayed to watch the fireworks, Gingerbread House had already stopped serving dinner. We got some dinner at Burger King and then went to the Ice Cream Palace for dessert. Ryan got a HUGE banana split. After about 3 bites, he knocked it to the floor. The Ice Cream Palace was closed by that point and Ryan was most upset but the fact he could get another in the morning somewhat calmed him down.
After baths, teeth brushing and deciding who was going to sleep where, everyone headed off to bed.
Tuesday, January 27, 2004
Off to Florida!
We were up and moving by 5:30 am so we could make it down to Nashville for our 9:00 am flight. Everyone was very excited and got up and ready quickly. Of course, it helped that we were packed and everything was in the van prior to going to bed to minimize what we had to do in the morning.
The drive to Nashville was uneventful and once there, we went to Park, Express, Fly. It was blowing snow and incredibly cold. We dropped off the van and climbed into a limo to ride to the airport in style.
There was little to no line at check in so we were able to get up to the Southwest counter with no problem other than wrangling 6 kids, 2 adults, 5 bags, 7 carry ons and 2 strollers. Once we were there, we found out that we should have had Kierynn's birth certificate or shot record but after a few moments of distress, we got our boarding passes.
This was the first time we had flown as a family since our return from overseas in 1996. Nicholas, Ryan, Devin and Mom all set off the metal detector. After removing shoes, belts, jackets, keys and fingernail clippers....as well as Kierynn's diaper being checked with the metal wand, we got back on schedule.
Since we had left home so early, we really did not get breakfast so once we were at the gate prior to our flight, we broke out the yogurt and juice we had brought along. All the kids looked out on the runway to watch incoming flights and wait for our plane to arrive from Kansas City. Iain just loved watching the planes coming in.
We made it to Orlando with no problems where we were met by two Give Kids the World Volunteers named Trudy and John. They escorted us to luggage claim and then to our car rental. We got a Chevy Venture and were on our way.
Right off the bat, we all saw an alligator sunning itself by some standing water. It was a very short drive to where we were staying.
Give Kids the World Village is located in Kissimmee, Florida. We first went to the House of Hearts to check in. Devin got a stuffed Mickey Mouse, his button to show he is with GKTW and a shirt. All the other kids got stuffed Shamu killer whales and a shirt...to include Kierynn. While they ran around and looked at the scale model of the village, we got checked in and then taken to our villa.
We got villa 156, which was right across from the water park, swimming pool and just a few feet away from the Gingerbread House and the carousel. We had just enough time to run over to the Ice Cream Palace to get a light lunch of sandwiches, hot dogs and chips.
We spent some time looking around Amberville Train Station and then headed to the dock to try our hands at fishing. There is a stocked lake there. In a short amount of time, Ryan had caught 6 fish, Nicholas 3 fish and Kaity caught 2 fish. Devin was not very patient and gave up after he didn't catch a fish right off.
After dinner, Mom went up for an orientation where we got the tickets to the various parks and given information on what we could expect during the week.
Even though it was pretty chilly out, the pool was heated and the kids pestered enough to the point that we took them swimming. In about 20 minutes, everyone was cold enough to dash back to the villa and get into a hot bath to warm up. We had a huge jacuzzi tub in the back bathroom to soak in.
After watching a little bit of TV and planning where we were going to go first, everyone got to bed for the evening.
Tuesday, January 20, 2004
Long Day
We are on every other week clinic visits but came in this week since Devin was due for his monthly IV medication. Since he was going to have an IV put in to get the pentamimine, it was decided to go ahead and give him some IVIG as well. This meant that rather than sit for an hour while the first medication ran, we had to wait 2 and a half hours for the IVIG to run then an hour for the other to run. We ended up being in the clinic until close to 2 pm...which makes for a very long day.
His appointment went well though. Dr Frangoul is pleased with how well he looks and is doing. The lingering concern is Devin's weight, which was down a pound over last week. He is eating well but just not really putting on weight and it doesn't seem to matter how much we run his NG feeds.
Next week we will be going down to Orlando, Florida. This is Devin's Make A Wish trip and the entire family is going. All the kids are already pinging off the walls in anticipation.
We will update everyone, including pictures, when we get back.
Tuesday, January 13, 2004
Weight Gain!
Yes, yes!! Devin actually gained some weight! He is up 4 lbs from his last visit. He is also eating pretty much on par with the rest of the kids. It is so nice to see him eating like everyone else. He is also eating his veggies again. He got a break from eating them for a bit since he would deliberately throw up if I had him eat them. Now, he is eating them (complete with faces) but doing it.
All of his counts are great and he is great. He has started to walk on our treadmill since it is a bit chilly to bundle everyone up and go walk around the block. Since we know the milage around the block, he just gets up there and goes until he hits that mark. He is not going at a fast pace but he is going and not stopping.
We have been at every two week appointments but we need to go back next week. It is time for his once a month IV meds so we will go do that and then go back onto our two week schedule.
I put up a few new pictures of Devin. One is him working on a Boy Scout project and the other shows him taking charge of his own medications. He will push the meds through his line if I draw them up first.
Thursday, January 01, 2004
