For those who don't know, Ryan had a relapse & spent most of the summer at the University of Iowa Hospital. He is currently residing at the "On With Life" in Ankeny, Iowa. The following are email excerpts that were received from his aunt. Please keep Ryan in your thoughts & prayers.
 

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"So far, so good", as the saying goes.

I think the 'headline' might be that Mike and Kevin took Ryan to Iowa City, in their car, for a follow-up check-up with Dr Greenlee. That was Monday, Sept 20. Ryan had an MRI and Dr Greenlee said the shunt is where it should be and doing what it should be doing. Apparently there were no problems with the cysts or the brain stem either. Consequently the doctor is satisfied with Ryan's progress enough to the point where Ryan's next check-up is in 3 months. This is doubly good news: (a) Ryan's body/brain are mending and (b) it makes Mike departure and absence for the next 3 weeks somewhat less stressful knowing that Ryan is on the mend. (Mike left 09/21 for Vet's Admin training in Virginia.)

Regarding the issue of Ryan's (understandable) impatience, that kind of came to forbearance. Mike visited Ryan on Saturday while Ryan was working with his therapists. One of the reasons Mike wanted to be there was to video or still photo Ryan (I'm not sure which he did, could have been both) for comparison both past and future. While there Mike also found out why O-W-L won't let Ryan feed himself and why Ryan isn't yet involved in walking activities.

Altho Ryan can and has fed himself, his impatience gets in the way. The eating routine is: take a small bite (about 1/3 level teaspoon) and swallow, take a second bite and swallow, swallow a couple of times without food, take a drink albeit thickened and repeat the procedure. When Ryan was feeding himself, he would take several bites of level full (if not more) teaspoons of his foo: he didn't swallow without food, and it was many bites of food before he drank anything. Another problem with Ryan feeding himself was it would take him twice as long as it does when someone was feeding him and, thus, he'd be worn out. With staff or Kevin or Mike feeding Ryan the meal is over in about 20 to 30 minutes and Ryan isn't 'pooped'. Everyone knows Ryan is capable of feeding himself and everyone knows, including Ryan, that, at the present time, it just isn't a good idea. Improperly fed can result in aspirating food into his lungs.

Mike told me on Saturday that Ryan has lost some of his strength since the transfer from Iowa City to Ankeny. Ryan could and did 'walk' in Iowa City but Mike said that Ryan's physical ability to walk is now the same as or less then it was on June 15. Mike and Chris could barely get Ryan to and in the car that day. Once again Ryan will have to learn to accept that he needs to get his core strength built up before he can start on the rest of his muscles: i.e.: he'll have to exercise his patience along with his core muscles.

Another observation Mike made on Saturday was watching one of Ryan's therapists work with Ryan on his writing legibility. The therapist strapped weights to Ryan's arm (wrist, actually) which helped stabilize his muscle control. The result was more legible writing. Mike said he's seen this procedure used before.

That pretty much covers the latest. I would pass on, tho, that Ryan gets melancholy easily, which is understandable. Getting upbeat cards does help - I'm just sayin'.

Progress is steady but slow so I don't really have a lot to pass on. However, as mundane as it may be, I know y'all like to be kept posted about Ryan so I'll update again in a few days. Thank you, as always, for keeping Ryan, Mike, Kevin, and Chris in your thoughts and for your support.

I visited with Ryan yesterday in the afternoon and early evening. Just to be silly (again) I took my blonde wig. That turned out to be interesting as you will see later.

Ryan is improving altho On With Life is rather cautious. I asked Ryan if he could walk and he said he could but 'they' think it is too dangerous and won't let him. I asked Ryan what kind of physical exercise is he doing and he said working on his core muscles. I asked if he could dress himself and his reply was that he could but 'they' won't let him. Believing you can conquer a task is half the battle so I hope O-W-L doesn't wait too long before they get Ryan 'moving' under his own 'steam'. I've seen what he can do when the 'experts' don't think he can. He can be rather remarkable with his results. As far as speech therapy is concerned, I didn't get into a discussion about that as it was nearly dinner time.

Ryan did get shed of the trach on Tuesday. Now he just has a gauze patch over the hole while it mends. He does, however, still have his PEG and will until staff sees that Ryan's oral intake of liquids is sufficient. One aid commented that he does drink a lot (imagine that!?!). I accompanied Ryan to the dining area. He was quite hungry so he allowed the aid to feed him. However knowing Ryan, I don't think he really wanted to acquiesce. He is fully capable of feeding himself. I've seen him do it at O-W-L. Maybe getting his wishes better understood will be an incentive for Ryan to really work on his communication skills.

And now to the wig. I wore it into his room to see if he'd notice. He had his eye mask and eye patch on when I got there so it took a bit for his eyes to adjust. Once they did he told me I looked like Deb (my daughter) only shorter. Guess I'll have to put the wig on next time I see Deb to see what others think. Anyway, I asked him if he wanted to try on my wig as we were waiting for the OK for me to take him to the dining room. He did. The staff got a laugh or two, the intended results.

After dinner Ryan and I went to the common area. Since his folks had not yet arrived, I suggested he put on the wig to see what their immediate reaction would be. The staff and other residents all 'fell' into the scheme. One staff member told another staff member that they had a 'new' resident - a blonde lady with a very black beard. (Ryan isn't shaving until the day he leaves O-W-L.) One of the resident's wanted to know the name of the 'new' person. I asked Ryan what name was he going to use. I couldn't understand him so he started 'signing'. I understood M, A, and then he signed L. I asked if he meant R and he shook his head "no". As someone had suggested he call himself Marilyn, I thought that was what he was trying 'sign'. I just couldn't figure out what the he was spelling so I got the dry erase board and we started again: M A L I B and then I got it!!! MALIBU! I just started laughing and told Ryan that was really a good one: Malibu Barbie. He had a pretty good laugh too! I wrote MALIBU BARBIE on the dry erase so everyone would know who the 'new' lady was. Mike and Kevin arrived shortly thereafter and were surprised to meet the 'new' resident. Mike took a picture.

The picture is of Ryan with my longish blonde wig. He not only has a black beard but he also has his eye patch. So he could be either Malibu Barbie or a pirate (or both maybe?). Kevin even tried the wig on. I have to say it looks good on her. Mike declined - he didn't want to mess up his "do" which is what our dad used to say - only our dad wasn't joking about having his "do" messed with. Staff said they dress-up for Halloween. I've got some other wigs I'll take to see which is the best for Ryan, depending on who he wants to be.

As expressed earlier, I hope O-W-L doesn't wait too long before they let Ryan at least try to walk. He gets rather frustrated and wants to be literally moving. If Iowa City hadn't had him using his walker before his release to O-W-L, I don't think Ryan would be quite so antsy. I'm also of the opinion that O-W-L has yet to discover Ryan's capacity for dicipline. He has had lots of experience having been trained in one of the Martial Arts (Tae Kwondo, I think), his previous recovery therapies, and his 5 months in China with alternative therapy. Perhaps a goal of O-W-L is to teach, consciously or subconsciously, patience. That would be a good thing for Ryan (or anyone). A comment Ryan did make after having some time to observe his surroundings and the other residents is that there are people there that are a lot worse off then his is. This, too, is good thing: i.e. that he noticed and that he verbalized. Kevin did point out to Ryan that he, too, is an inspiration to the other residents and the staff.

I'll update again in a few days. Hopefully I won't find the need to update sooner unless it is a really good thing. Until then, thank you for your support and for keeping Ryan, Kevin, Mike, and Chris in your thoughts.

Thought I should send an update before the weekend. The good news is Ryan is still in Ankeny. He did, however, scare the beegeebees out of a few folks to the point where it was thought a trip to Iowa City was imminent.

On Wednesday evening Kevin and Mike noticed Ryan's speech was getting weak. By the time they left he could not speak. They also noticed his right eye was drooping and the right side of his face was too. Thursday morning Kevin reported that Ryan was even worse. Staff told Mike that they had procedures for problems with shunts. Mike explained that Ryan's body does not follow SOP and therefore staff should not rely on their manuals. Then staff wanted to know if they should contact the doctor (for On With Life). Mike said that if Ryan needed a doctor then what staff needed to do was get an ambulance and get Ryan to Iowa City. A doctor not familiar with Ryan and/or his history was a waste of time that Ryan couldn't afford. Kevin told staff that they needed to contact Iowa City.

When Ryan left Iowa City, Dr Nader's instructions to Mike and Kevin were that if anything should happen they were to contact him at once. He even gave them his pager number. On With Life, not knowing about this, just called Iowa City and requested an intern return the call. As it happened (probably not by chance either) the intern that called back is VERY familiar with Ryan and his medical idiosyncrasies. Last May 2 this intern was on duty when Mike and Kevin brought Ryan into ER. This doctor stated he was getting Ryan admitted ASAP because he knew how things could go with Ryan.

Kevin returned home Thursday afternoon. She and Mike returned to On With Life late Thursday afternoon fully prepared for yet another trip to Iowa City. Absolute surprise!! Ryan was much better and to the extent that his right eye was open. So what ever had been the problem apparently corrected itself. Mike said that Ryan has NEVER self-corrected. Both Mike and Kevin were taken aback at the speed of the correction. "Amazing" might be a word they'd use.

Mike has 3 scenarios for what the problem might have been:

• (1) the shunt was failing possibly because the ventricles were enlarged or the venticiles were enlarging because the shunt was failing. Either way the result was too much CSF.
• (2) the brain stem was swelling or had pressure because the known cyst was enlarging.
• (3) his body was in 'repair' mode which sometimes has the effect of a semi-shut down.

If it was the shunt then apparently the device was able to compensate for additional fluid and thus resume proper operation.

If it was the cyst then possibly the cyst got so large that the effect was a leak which reduced the fluid level as well as the size of the cyst (maybe even eliminating it) and therefore the brain stem was under less stress.

No one will probably ever know what really happened. Although the experience was scary, the positive outcome is that his body/brain had a significant problem which his body was able to correct without intervention.

I plan to make a trip to see Ryan this weekend not having been able to go this past mid-week. I'll update after I go or after I talk to Mike and Kevin. There is, of course, always the caveat that I'll update sooner if the need arises. Hope which ever team you're rooting for wins (Cy-Hawk or any other game) and that you have a good weekend. Thank you for keeping Ryan, Mike, Kevin, and Chris in your thoughts and for your support.

So Far - So Good!! Ryan, Mike, Kevin, and Chris are spending this 2010 Labor Day Holiday morning in Ankeny and NOT in Iowa City!! That is one accomplishment today. The other is that Ryan has actually made it one week without incident.

I drove up this morning and had breakfast with the foursome. Ryan had 2 decent sized banana pancakes (the cook added one large banana (1/2 to each) to the pancakes after they were started on the grill). He also had a glass of OJ and a glass of chocolate milk. He is still on a pureed diet so the pancakes looked more like oatmeal. He again fed himself both the pancakes and drinks.

After breakfast Ryan went to a modified therapy session. It was a group session and modified in time and activity because of the holiday. The mission for the group today was to make salsa from fresh ingredients. I didn't stay but I'm am curious as to how Ryan faired as he used to make his own salsa complete with jalapenos (seeds and all): quite spicy!! The staff member told us they wouldn't be using jalapenos in their salsa today - too spicy!

He still has both the trach and the PEG but the possibility of either and/or both being removed this week is quite high. He has been there a week and has taken no nourishment via the PEG since his arrival. And, as previously reported, he is breathing on his own.

Ryan's progress is slow, but sure. And if he decides to have a pity party he is at the right place because there are people in On With Life that are, or have been, equally as bad as Ryan is and was and some residents were worse. One of the residents has taken Ryan under his wing: his name is Darrell. I don't know what Darrell is recovering from but he is wheel chair bound and appears to have some partial paralysis in his left hand/arm. He has, however, not allowed his situation to affect his sense of humor. When told at a recent function at On With Life that he had to sing a song (he sings a lot), he broke out singing "Oh Lord Its Hard to Be Humble (when you're perfect in every way ------)". He definitely got folks laughing. Darrell will be good for Ryan. Ryan has a good sense of humor, too, when he chooses to use it. So maybe they'll not only be good for each other but the rest of On With Life.

Since they were all 4 there this morning, and I just happened to have my camera, I took a picture of the Dennis Family celebrating Labor Day 2010 in Ankeny, IA.


I tried to get Ryan and Chris to remove their baseball caps but was obviously unsuccessful. Also, getting Chris to smile is a challenge. Maybe next time on the "no caps" and Chris smiling.

I'll continue to post updates but probably not daily, unless of course, it is warranted. As always, thank you all, so very much, for supporting Ryan, Kevin, Mike, and Chris and for keeping them in your thoughts. Your efforts are obviously having the desired affect.

I visited Ryan late yesterday afternoon, actually early evening. I got there just in time to join them for dinner: them being Mike, Kevin, and Ryan's uncles. On With Life prepares very tasty food: a meal with drink is less than $5.00. Mike made the observation that not only are the meals tasty and more than reasonable prices, the parking is FREE. Rather a change from U of I. And Ryan's private room and bath are very spacious.

Ryan again fed himself and last evening he also drank from his glass pretty much on his own. Every once in a while his muscles get a little "jerky" but on the whole he is does very well eating.

I still don't know just what is happening during his various therapies but he does get all three every day (PT, OT, ST). I'm glad to report that Ryan is now breathing on his own and the trach has been "capped off ". There is a very good possibility that his trach will be removed next week and a slight chance it could come out today. He consumes all of his food orally and gets no nutrition via his PEG. The staff are keeping track of Ryan's food intake and will make an evaluation soon regarding the removal of his PEG. We were teasing him last evening that his Uncle Kurt could just hang on to the tube while Ryan quickly backed up and between the two of them the PEG could be removed. Ryan immediately held up the tube indicating Kurt should grab on. Ryan is apparently more than ready to get rid of the PEG - Go Figure!!

Ryan decided to watch the Iowa State season opener football game with some of the other residents. Ryan was a student and plans to return to Iowa State as soon as he can. We didn't stay for the entire game but the score was an encouraging 10-0 in ISU's favor when we left. Iowa State winning the game was not only good for Iowa State and the Ames residences it had to give Ryan a boost too.

At the risk of jinxing the event, Labor Day will be the first 2010 holiday that Mike, Kevin, and Ryan aren't spending in hospital at U of I. It probably sounds kind of silly, but getting to next Tuesday without concern and not in Iowa City will be a welcomed achievement. Obviously everyday Ryan is in Ankeny is a day he is getting better and a day he is Not at U of I.

I'll update again after the holiday, unless something happens before then that you should know about. Hope you all have a great, safe, and relaxing Labor Day weekend. Until then "Thank You!!" for your support and for keeping Ryan, Kevin, Mike, and Chris in your thoughts.

I finally managed to get to On With Life late this afternoon. What a difference in Ryan!!!!

Ryan was sitting in a special wheel chair that has a head/neck rest. The design of the chair also puts him at an angle that makes Ryan have to use his stomach core muscles. Here's a surprise - Ryan does Not like this chair. He gets therapy 3 1/2 to 4 hours a day. I didn't ask what kind but I'm reasonably sure it involves PT / OT / ST. I'll find out later this week.

It was just about time for supper when I arrived. I stayed while he ate. Ryan's food is pureed, but he gobbled it down fairly quickly. He had Salisbury steak, mashed potatoes, (the pureed Salisbury steak served as gravy), carrots, and peaches, thickened chocolate milk and juice. Altho he needed help with his drinks, Ryan fed himself his entire meal!!! Just think, a week ago he wasn't even eating food at all.

Mike and Kevin were there too. One could definitely see a difference in their demeanor: considerably more relaxed and upbeat. On With Life offers low cost meals for visitors so Mike and Kevin ate dinner with Ryan. They've not been able to eat any meals with Ryan, until yesterday, since June 14.

Ryan's already being "Ryan" as he told us this evening that he shouldn't be in On With Life. When asked why he informed us that he is OK enough to go home! I asked him if he could go up and down stairs and he replied that he could. Mike had the "yea right !!" look on his face. I told Ryan that this was his chance to prove us wrong (by completing all the therapy tasks that would prove he's recovered).

Ryan doesn't have a phone in his room and he didn't know if he'd be getting one. Obviously Ryan can have visitors. I asked Mike if it would be OK to visit Ryan when he is getting his therapy and Mike feels it would be alright. Feel free to visit him whenever your schedule permits. Call or email me for directions.

It is so nice to be able to report how much Ryan has improved in the last month. Even his hair is growing back! His body is pretty amazing and his sheer will power is to be envied. And I'm sure you'd agree that if anyone can make a full recovery, it is Ryan. Of course it helps Ryan a great deal that he has some pretty awesome parents that have been there for him every minute.

As always, thank you so much for keeping Ryan, Mike, Kevin, and Chris in your thoughts and for your support. And I know Ryan will enjoy any mail and visitors he gets.

This is truly an email Mike, Kevin, Chris, and especially Ryan, have been wanting me to send -- Ryan is in Ankeny at On With Life. You GO Guy!!!!

The doctors requested an MRI yesterday (Sunday) as it had been a week since they finally got all the 'tweak buttons' figured out on Ryan's shunt. In the meantime, late on Friday, On With Life called and said if Ryan were physically able to be released on Monday (today), they had an opening. Preparations were started in the advent Ryan was deemed "OK" to be released on Monday. The doctors reviewed the MRI early this morning and gave the 'green light' that Ryan was Finally ready to go. They did mention that they, the doctors and staff, hoped the next time (and ever after) they saw Ryan that it would be just to say "Hi!!".

Ryan arrived in Ankeny at 10:15 this morning. He hates riding in ambulances, especially for 2 hours. But he was soooo glad to be getting out of U of I that a 2 hour ambulance ride was 'nothing'. I talked to Mike about 1 PM. By that time Ryan had already had 2 therapies (altho I don't know for what) and had eaten lunch with REAL food: chopped chicken, mashed potatoes, and more. Mike and Kevin even got a real, free lunch too. They report the food is pretty good at On With Life.

Mike said they still needed to go home and get Ryan's things that he'll need in Ankeny. I've not yet found out if he has a phone in his room. Kevin contacted her work to let them know she was actually leaving Iowa City. Considering how long it has been since she has been home, her boss agreed to Kevin having a return date of Sept 13. This will also give Kevin the opportunity to be there with Ryan while he adjusts to his new environment/routine and getting settled in.

Thus Ryan turns another page and starts another chapter in his life. I can't begin to tell you how much Ryan, Kevin, Mike, and Chris appreciate all of your support and for continually thinking of them. It surely made a huge difference in the current outcome of Ryan's story. He still has a long way to go and those of us that know Ryan's body are fully cognizant that an "I Gotcha!" can happen any time. We are, as we know you are too, hopeful that maybe this time his body will decide that it is time to let this man get on with his FULL recovery and his life but with no more 'surprises'.

I plan to go to Ankeny tomorrow. After I get home I'll send out an update. As Ryan progresses I'll send out updates, or maybe Mike will want to. Regardless, you'll be kept in the loop.

Thanks, again, for caring......