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.

posted by Devin's Mom 5:31 PM

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!

posted by Devin's Mom 9:51 PM

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.

posted by Devin's Mom 9:17 PM