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Sunday, June 15, 2008 0:20 AM CDT

Aidan is now NINE years old! The year between 8 and 9 was one of the best he has ever had. He did test EBV-positive again, but so mildly that he has not had to go on any extra medications.

I have started a blog for our occasional Aidan updates. Since Aidan has been doing great medically, it is hard to update here, since CaringBridge is mostly meant for ongoing medical news.

Also, I can't put up pictures or use html code as easily as I would like to. So here is the blog for Aidan News:

The Life and Times of Aidan

If you are one of the people who still follows Aidan's journey, you're most welcome to visit there!

Saturday, March 17, 2007 1:15 AM CDT

Happy St Patrick's Day!

Aidan's still doing great! He is learning to sound out words and can write capital A's. We have about 50 A's written all over the dust coating on our mountain Suburban. He has finally learned how to count fairly reliably but right now he's obviously more of a literary type like his Mom than a math type like his Dad. However, in all other ways he is a somewhat battle scarred carbon copy of his Daddy.

He and his little brother Paddy are finally starting to click as buddies. One of their favorite activities is racing, as in the grocery store: Hey, let's race down the aisle. For this reason we like Costco which has the double seats on the grocery cart. It is called containment.

They will both be signing up for T-ball later today. Aidan keeps asking "When do I go to T'ball? Today?" It will come soon! He likes the thought of Paddy being a teammate. Paddy is young at four to enter the world of competitive sports but we are hoping that if they join together it will make it fun for both of them. Anyway, we'll get cute pictures and a T shirt and hat, at least.

Aidan's labs continue to be textbook normal, as the nurse said at his GI clinic last week. This is wonderful to hear every time. It will never be old to me.

Our snow is melting up here. This was the first winter Aidan has really been healthy enough and mobile enough to go out and really enjoy it. He is outside as much as he can be, sometimes dressed in shorts and his big brother's boots if I don't catch him : ).

The picture on the front page is of him in character in one of the home movies his older siblings like to make. He is the Inspector's assistant who catches the villain in this episode. You can tell he feels good about it.

More later,
Willa
(Aidan's mom)

Saturday, December 2, 2006 1:11 AM CST

Aidan has been doing so well recently that I haven't had much medical news to report! He had a kidney ultrasound and check-up that looked fine. He doesn't have to see the nephrologist again until next year. He just got a hand brace that helps him hold his left hand in a better pattern and hopefully use it more. Last week we had our first snow up here in the Sierras, and he has been out in it a lot. He even did sledding races down our driveway with his two brothers Kieron and Paddy. He just got to go to his aunt Kelly's house for Thanksgiving and had fun decorating sugar cookies and hanging around with his cousins and other relatives.

On Monday his little brother Paddy will turn four! And today is Aidan's half-birthday, come to think of it. Below is part of an email I wrote way back in January 2003, just after Paddy was born. Paddy had the same birth condition as Aidan -- neonatal hemochromatosis -- and was a sick little boy right after birth. They air-vac'd him to San Francisco and he was in the NICU for 3 weeks and came home on Christmas Eve.

I thought it would be interesting to compare, since we were having so many struggles back then. If you are visiting this page and have a child waiting for a transplant or just post-transplant, or with other severe medical difficulties, it might be difficult to see the light at the end of the tunnel. Our transplant coordinator told us that we would eventually get to the easier times, and she was right. But it took quite a long time.

-----------------------
------------------------

from January 2003

An update on our little boys:
Patrick — at one month of age, he is fine to all appearances. We haven’t had any follow up labs since he left the ICN on Christmas Eve so I can’t categorically say “He is fine”. He is a great baby –we couldn’t have asked for a better Christmas present. He has enough older siblings that he is hardly ever put down, and he is just starting to smile at us!

Aidan — he had to have a biopsy the weekend between Christmas and New Years. We both were with him during the day of the procedure — we brought Clare, who was invaluable as a Mommy’s helper for Patrick since poor Aidan took 7 tries to get an IV started this time. Kevin stayed with him overnight at the hospital — the preliminary results of the biopsy showed no rejection but they haven’t received the final word back from SF. He is still pretty yellow. This is the first time he has been jaundiced since the transplant and that has been scary. But his bilirubin has stabilized and his other numbers are also stable though still high.

Poor Aidan has been coping pretty well with what has to be the worst sibling displacement in history. …his mom disappearing for 3 weeks, constant driving back and forth from Fresno to SF, then a whole set of medical procedures of his own. Plus the seizure meds he has been on have affected his personality a little.

He thinks Patrick is a big joke — every time Patrick sneezes Aidan literally falls over laughing. Other than that, I’m not sure if he really understands that Patrick is not just a rather realistic stuffed toy! As for me — physically, fine except for not losing the pregnancy weight, maybe because we have been living on pizza and hamburgers and holiday food??; and except for waking up every 2 hours on the dot to warm bottles and administer them. Sleep deprivation has taken on new shades of meaning. Plus it seems to take 2 hands to hold a baby and a bottle (Patrick needs to be on a low-iron diet) so that leaves me needing a third hand in order to type emails ;-)

Monday, July 17, 2006 1:00 AM CDT

A quick update to mention that Aidan is still doing great. The incision at his G Tube site has completely closed over, though it's still a bit red. It doesn't cause him any discomfort. Several of us in the family travelled up north to see friends. A seven hour trip and temps over 100 both ways, but Aidan was completely happy. While there, we got to go to the beach, and he went swimming in an inflatable tire, he got to play on a real (and HUGE) lawn and feed chickens and play on the swing and see fish in a hatchery and visit a historical museum with a working model train. Plus all the unfamiliar people and the new environment and toys. He enjoyed it so much that every day since we got back he completely packs the back of our Suburban with whatever he can find and asks me hopefully, "Where are we going?"

Tuesday, June 20, 2006 9:38 AM CDT

"My G-tube is gone forever!" (Aidan's words)

Yesterday Aidan had the surgery to close up the opening where his G-Tube had been. The doctor wanted him there by 6:30 am and everything went as planned. We went to Grandpa's house in Fresno to spend the night, got up a bit before 6 am and were there at Children's on schedule.

He was in the Operating Room by 7:30am. Biggest bonus of the day!! he didn't have to get an IV until he was under sedation at the OR! I wonder if his miserable experiences in previous day surgeries have influenced their change in policy or if it's just this doctor's preference . But this made things so much easier for everyone concerned. They even got his monthly labs while he was under (I hope and they planned -- we didn't ask afterwards because by then, what would be the point?)

He was recovering by 8:30 and we were out of there slightly after 9 am and home by about 10:30.

We didn't even have to give him motrin until 2 and then again at 8 pm just before he went to sleep for the night.

You know that a surgery has gone well when the most difficult part of it is trying to keep the child quiet on the sofa for the rest of the day!

He did get a sudden unexplained contact-allergy type rash on his face but it went away in about an hour. HE also had a temperature, but this is completely normal for Aidan after a surgery.

This morning he asked to watch a video and have 7Up and Nachos. Life is settling back to normal -- though we'll be buying less 7UP now that he won't be leaking so much of his fluids through his stoma.

Wednesday, June 14, 2006 12:05 AM CDT

Aidan had his surgical consultation yesterday. The surgery is scheduled for Monday the 19th -- it will be a day surgery and not too complicated, just a matter of revising the tissue and stitching. We have to get to the hospital by 6:30 (am, that is) so there is a strong possibility that we will stay Sunday night with Aidan's grandparents in town. Our 20th wedding anniversary is also the 19th and our two oldest boys have birthdays on the 17th and 25th of June, respectively.

June seems to be a medical month in his history -- I think we are at 5 out of 8 right now as far as hospitalizations for June, if you count his birth month.... !

We figured out that an Ace bandage wrapped around his middle seems to keep the stoma from leaking as much, and also avoids the discomfort of removing tape from the bandage several times a day. So his comfort level has been much better in the past couple of weeks. But I can tell his mood has been more fragile in the past couple of weeks -- he is not his normal cheerful self -- so I'm glad that pretty soon he will be past all this. The pediatric surgeon is excellent -- he made the news a few years back when he separated Siamese twins -- so we know Aidan is in good hands.

Tuesday, June 6, 2006 11:56 AM CDT

News from the GI clinic yesterday was that Aidan is scheduled for a pediatric surgery consultation, but not until the 13th. That's a week from now and there is no guarantee that surgery will happen right after that either. The surgeon is booked up through summer and basically he will have to decide how urgent Aidan's surgery to close his G Tube stoma is.

This is rather frustrating. We didn't really want surgery if it could be avoided but now that we know the stoma will probably not close on its own, we'd much rather get it over with and get Aidan past his discomfort. He is in pain when he eats and drinks because the gastric acids leak out of the opening (sorry for the graphic details). Yesterday the site was bleeding yesterday and it really upset him -- he hates the sight of blood! Desitin (diaper rash cream) and frequent bandage changes seem to be helpful, and we are going to try Maalox (antacid) at the GI doctor's recommendation.

Other than that, everything is fine on the medical front. His recent labs have been good, he is enjoying walks with his "purple stroller" -- actually a pediatric wheelchair. When he is over this G tube thing, we will be able to go on some hikes further afield than our own neighborhood, and maybe go up to visit his grandma at her cabin by the lake.

Aidan had a birthday last week! He is seven! What a great boy he is turning into! When he feels pain, he immediately looks for something to laugh at or make a joke about. I think he gets that from the Ryan/Lord side of the family, because his daddy is just the same way. Aidan is a trooper!

More later,
Willa (Aidan's mom)

Friday, June 2, 2006 9:43 AM CDT

Aidan is up early today and I can hear him chatting to his two older brothers who are sleeping up in the loft. “I can’t believe it…!” his voice carries over to the bedroom where I’m typing, but then drops into a lower tone. He’s probably telling them to do their chores since that is his usual morning message. Now he’s back in here asking me to read him a book. “Can I sit on your lap?”

Aidan turns 7 today! He had two clinics yesterday, one for neurology and one for GI to look at his g-tube opening which is still not healing. They are going to refer him for surgery. But we do not know when, yet. After the two clinics we went shopping for a couple of birthday presents for him and for his cake, and stocked up on groceries as well. Together with the hour car trip each way, it was pretty exhausting and uncomfortable for him. There was a point where he was staring at me bitterly and saying: “We’re NOT going home — it’s snowing too hard.” (actually, it was over 90 degrees). “We CAN’T get fries — ” etc. These negative moments do not come often and when they do I know he’s in serious discomfort.

So because of the arduous, dispiriting day and the pending surgery, we decided to celebrate his birthday a day early — yesterday evening instead of today. It was a good decision; yesterday turned out well. It ended with Aidan wheeled around in his purple wheelchair firing off a little spring-powered airplane his grandma got for him.

Happy birthday, Aidan! You have taught us so much about joy. WE got him a Tonka crane since he loves construction trucks so much and he is calling it “Kitty” : ). He led our rosary for us last night as is our custom. We are blessed to have him with us, the eighth member in this family of nine.

Sunday, May 21, 2006 1:11 AM CDT

I guess there is some medical news to report again after a long peaceful time. A couple of weeks ago Aidan got a new brace for his left leg. It is a DAFO, which means it is specially molded to fit his foot. It has a hinge on it so that he can flex his foot less than 90 degrees but not beyond 90 degrees, if that makes sense. His problem is extra tone in his leg, so he will walk on his toes if he is left to his own devices. This brace is meant to prevent him from doing this.

A few days later he acquired a wheelchair. The diagnosis is "limited mobility" which means he can walk but gets tired after a short time because of the left hemiparesis described above and because he is medically fragile and weaker overall than the typical almost 7 year old. So the wheelchair is for when we go on trail hikes or neighborhood walks or trips to the mall, now that he has outgrown a normal-size stroller. He got to choose the color himself -- PURPLE! -- and he LOVES his purple stroller, as he calls it. We go for a daily walk now that it is finally spring in the Sierra mountains. He likes to take turns pushing the stroller by himself and it is good exercise for him.

Then, last week, he had a GI clinic and the doctor decided it was time to finally remove his G Tube -- the feeding tube which goes into his stomach. He has had it for 6 years this June, but has not actually used it since January 2005. So it was definitely time. The doctor said that most of the G Tube openings close on their own within a day or two, so there was no need to go into surgery to put in stitches.

But once again, Aidan looks like being the exception. The site has been painful and leaking and a little infected.
We are treating it topically with antibiotic ointment and changing bandages very frequently. Aidan is so brave about it: "I'm laughing! That tickles!" and he has taken over the job of taking off the bandage, himself. He tells us that "My g-tube has gone to college to see Liam!" -- a double joke since actually Liam, his oldest brother, is now home from college as of last Sunday. Well, anyway, the G-tube is definitely gone, whether to seek out further education in southern CA or no.... : )

The GI nurse has told us that unless the site gets much worse or is still leaking and sore in a week or two, they would prefer to let it alone. This makes sense to us, because we too want to avoid a trip to the operating room under sedation if it can be avoided.

I'll update again soon when we know more about what is going to happen. Meanwhile, his most recent labs are just fine and he continues to grow and eat and learn. He just completed his first T-ball season and now has some athletic skills including batting a ball off a Tee, running to the bases, and sitting in a dugout (at least, for 3 minutes). He also can now chant "2-4-6-8 who do we appreciate!" and walk down a line doing high-fives. His team was the "A's" which to him meant "A for Aidan!" GO Aidan!

More later,
Willa (Aidan's mom)

Sunday, February 5, 2006 7:10 PM CST

It's Sunday and I, Aidan's mom, have some free time on my hands since everyone else is watching the Superbowl! So I thought I would write a "good" update, since I think Aidan's grandma is absolutely right that the good times are important to write about too.

Aidan has been doing very well since his pneumonia and seizure. He had a cold last week and ran a temperature, but was over it quickly.

He is learning his alphabet and knows almost all the letters. We are starting to work on words now. He can recognize his name, "Aidan", and also "Pikachu" (his favorite Pokemon)

His favorite thing to do besides going to Grandma's house is going outside to play in the snow. We still have quite a lot in our front yard, even though it's been in the 50's. He tried sledding last week -- loved it!

He just helped me make pizza, our Sunday tradition.

His occupational and speech therapists haven't been able to come as often this winter because of illness and weather, but though he misses their visits when they do not come, he seems to be progressing pretty well.

More later,
Willa (Aidan's mom)

Tuesday, January 10, 2006 11:57 PM CST

Aidan's had quite a couple of weeks medically. Most recently he had a seizure while we were in town taking his oldest brother Liam to the Amtrak station to return to college. The seizure started out as a partial one, like the one last Friday (see Journal History), but then became a full-blown one. We drove him to the Children's Hospital, where his Daddy brought him into the ER at a run and called for immediate medical attention. He was taken straight back to a table and given Oxygen and an IV started for Ativan (a sedative to halt the seizure).

Finally the seizure stopped, but by that time Aidan had stopped breathing on his own... he was not "moving air" -- as they said -- his chest was not rising and falling. The respiratory technician was giving him oxygen and breathing for him through the bag, but they had to decide whether to put him on a respirator or not. While trying to decide, they tried to draw blood from the artery, and this kicked him back into gear, almost literally, since he struggled and kicked and then started breathing again on his own.

After this, he slept for quite a long time due to the seizure and the sedative. He stayed in the ER overnight for observation and because the ICU and general ward were both full. Then he was moved to a general care unit the next day, and was discharged today.

He seems fine -- still recovering from the flu, but otherwise his normal self.

We are to see his neurologist in the next month or two, but they have not put him on a seizure med -- they left us to decide that, and we thought it made more sense to wait and see. His seizures are certainly scary, but they have been infrequent, and under normal circumstances we would have his seizure meds with us and be able to give them to him. If he starts seizing more frequently, the picture might look a bit differently both to us and to the neurologist.

His occupational therapist says that also, it might be a good idea to have some cranio-sacral therapy done when he has been ill since the seizures tend to happen when he is sick, and the cranio-sacral work has had some beneficial results with some people with a seizure disorder.

More later,
Willa
(Aidan's mom)

Sunday, January 8, 2006 1:41 PM CST

It's been a long time since Aidan has had two medical updates in a week's time! (see journal history for earlier entries).

Friday afternoon Aidan had a mild seizure. I think it was what they call a "partial seizure". He did not lose consciousness or become complete unresponsive. Rather, he started staggering around the living room, talking incoherently, and then leaned against the couch, gagging and retching. I helped him get on and he told me "I'm going to sleep" but the focus of his eyes started to drift upwards and to the left, which is what has happened in former seizures.

I brought him upstairs, trying to talk to him and keep him in the picture. He was shaking but not jerking the way he has in former seizures. Upstairs, he started talking and acting more clearly, and then fell asleep immediately and deeply, still with a dirty diaper (he had become incontinent during the seizure).

I called the pharmacist and he said that one of Aidan's antibiotics can sometimes cause seizures. So I called the doctor, the "hospitalist" at the hospital where Aidan had stayed. He thought under the circumstances, since the antibiotics were mostly a precaution anyway, that we should discontinue them.

Since then Aidan has been acting great. He ran a low temperature that night, but not since then. He still has a cold -- but we all do. His breathing has been great. In fact, Brendan's "sats" are lower than Aidan's -- Brendan's are hanging out in the low to mid 90's, and Aidan's are in the mid- to upper -90's -- great considering that we are at over a mile-high altitude.

Today Aidan is coming down with us to take his oldest brother Liam to the train station to return to college. We are not looking forward to that!

More later,
Willa
(Aidan's mom)

Tuesday, January 3, 2006 8:52 PM CST

This is the first time in ages I've had a medical update for this page. A few days after Christmas our whole family came down with some sort of respiratory virus. We thought it was Influenza but apparently it wasn't (more on that later). Anyway, one of us after another succumbed to a moderately high temp, general lassitude and aching, and then on to sniffles and coughing.

Aidan seemed to have one of the milder doses in the family range but on New Years' Eve (of course) he started getting quieter and more withdrawn. I brought out his pulse oximeter for the first time in about 2 years, to measure his Oxygen Sats, and he was too low -- in the mid to upper-80's. That is enough to account for low energy and irritability, which is what he was displaying. He was also running a temperature for the first time during this virus.

We put him on the oxygen we had from his earlier illnesses. A liter kept him in the upper-90 range for the night, but in the morning he still seemed too quiet and was breathing with some effort. We ended up calling the doctor who advised us to take him into the emergency room for a chest X-ray.

To make a long story short, the X ray showed something in his left lung and so they decided to consider it a mild pneumonia and admit him to the hospital. They did a blood culture and started him on antibiotics.

The ER nurse and phlebotomist were able to get an IV started with one poke AND draw blood, which in Aidan's history is simply wonderful good fortune. He coped beautifully, requesting a sticker, and saying, "I am being brave!" which made the nurse almost cry. Actually, he cashed out in stickers, since the X ray technician gave him a few too.

He was discharged about noon today. The culture was negative so apparently his pneumonia is viral rather than bacterial, but they are keeping him on oral antibiotics for a few days just to make sure, I guess. I, Aidan's mom, stayed with him for the 48 hours while Kevin, his dad, took 3 year old Paddy home to the other sick kids. There was a significant ice storm and several power outages to make their life adventurous while we were gone. I'm not sure who had it worse, but it is good to be reunited with a clear sky over our heads again. That was a long 48 hours for everyone, especially since I was sick and considered in isolation too, so I couldn't get to the cafeteria. They brought me meals and some coffee, but not enough of the latter!

Last Monday Aidan's MIckey G Tube came out and we had to run to the GI clinic to get a new one on Tuesday. So this past week has been quite medically eventful all things considered. I hope that is our share of hospitalizations for 2006. Time will tell!

More later,
Willa (Aidan's Mom)

Saturday, November 19, 2005 9:17 PM CST

Aidan has had his 6th transplant anniversary (Oct 1, 2005). He has been completely healthy for over a year now. His blood work has been absolutely stable and the best news, he has not used his G Tube for almost a year now! His favorite foods are: ramen noodles, quesadillas, stirfry chicken with rice, ham sandwiches, and then almost any kind of junk food. He likes fruit too, especially grapes. Will not even touch bananas or eggs, but other than that his diet is not too bad. He still drinks his Pediasure formula occasionally. We have enough around the house for the whole family to survive on for a month.

We have not asked about removing his Gtube yet, because there is not too much of a point. It is not bothering him or anyone right now. We almost forget it is there.

Thursday, January 13, 2005 12:51 AM CST

We have had snow here in a big way! About ten feet has been dumped in our corner of the Sierra National Forest, resulting in several power outages... the longest was over 48 hours. From Aidan's perspective, this was a fun adventure... his family was huddling around the fireplace for warmth as the outer rooms of the house dropped in temperature to as low as 40 degrees. He got lots of attention and cuddles from everyone and all the toys were easily within reach. When it got too dark to play, he could snuggle under a blanket with his father Kevin who of course couldn't work in his office because there was no computer. We've talked about buying a generator, but the experience WAS sort of fun and relationship building. We had running water (cold) and our gas stove worked, which definitely made life a little easier than it was for the pioneers.

Aidan's medical news is all good. He remains shunt-free after one year. His last test for the Ebstein Barr Virus was negative. He still has to stay on an antiviral medication for a year, but it doesn't seem to have any major side effects. He has not had a seizure for over a year. He is progressing developmentally. He talks a LOT and is a role model for his little brother Patrick, AND a rival as well. Aidan is never mean to Paddy, but Paddy has been known to shout "No nay NEVER!" to Aidan when they want the same toy, and Aidan responds nervously by saying, "Paddy, go see the guys!" (a polite way of saying "Go away!"). On the other hand, they also enjoy racing down the hall together, shouting "Ready set GO!" and they feed each other treats like chocolate chips. All in all, Paddy has been good for Aidan in many ways.

AIdan is eating WAY more of his calories by mouth instead of through his G Tube. This is big progress. Every time he started eating more by mouth in the past, some medical event occured to put him back to square one. But today, for instance, he just ate three bowls of Fruit Loops, and the other day he ate two bags of chips. OK, I didn't say they were GOOD calories, but just the eating part is a big start and what the occupational therapists say is of first importance for him. We can work on nutrition later. He is also drinking several cans of his formula a day on his own, and even takes his medicine and vitamins by mouth.

Well, I guess that is all the news for now. Aidan wants me to read to him. There are some more recent pictures in the photo page.

More later,
Willa (Aidan's mom)

Thursday, November 25, 2004 12:09 AM CST

Happy Thanksgiving to everyone! Later on today we are going down to Fresno to have Thanksgiving Dinner with Aidan's grandma and grandpa, and at least some of his aunts, uncles, and cousins. Aidan has been looking forward to this for several days!

We feel we have a LOT to be thankful for this year. Aidan's been doing so well. He is still on an antiviral medicine as a defense against EBV (see http://www.classkids.org/library/classqa/ebv.htm for the details on EBV and the liver transplant child). His liver numbers are still elevated, probably because of this. But that's really all the "medical" news we have about him.

All the other news is more "little kid" type news. Aidan is going to be 5 1/2 in about a week. He is homeschooling for Pre-K, but gets speech therapy through the school, occupational therapy through the Hawaii Elks, and physical therapy through Children's Hospital in Fresno. He loves to cook meals with his oldest brother, sing and dance to Irish folk music with his sister, and play with his other brothers. He also loves to go to the park or in fact, anywhere. Even a trip to the post office or the market is fun and exciting to him!

He loves to "read" his favorite books and push his stroller around the house. As usual, he has his own unique way of expressing himself and some of his current phrases are:

"Bunches and buckets of trees visit Aidan!" (he has a book with trees in it)
"I need to close the double-garage door!" (he thinks this is hilarious for some reason)
"Hello, Pharmacy, I'm talking to Dr Rosenthal right now, talk to you later, bye bye!" (He picks up the phone to say this!)

He can "sing" several Irish folk songs from start to finish, thanks to his sister's teaching! He is really a joyful and fun presence around the house.

Aidan's younger brother Patrick is almost two and is becoming a little more of a playmate for Aidan. He still has to learn not to grab toys away from Aidan, but they share treats like chips with each other. In fact, Aidan will let Patrick feed him by putting things in his mouth, which he won't let anyone else do. It's funny to hear Aidan trying to talk in "baby language" to communicate with Paddy, who is just starting to say short phrases. Aidan is a good older brother who will scold sometimes when Patrick seizes a toy, but never hits or pushes. He's a good role model for Patrick, who unfortunately DOES do the hitting and pushing things sometimes.

This has been such a "normal" autumn for us, the first in a long time. Aidan's oldest brother Liam has been filling out college applications, taking SAT exams, and working towards getting his driver's license. Clare is taking fiddle lessons up here in Shaver Lake. Brendan has been visiting and reading about Giant Sequoia groves, and taking pictures of them with his digital camera. Sean and Kieron like to play football and play with Bionicles, and try to "finish school" as fast as possible in order to do so!

More later,
Willa (Aidan's mom)

Friday, September 24, 2004 11:28 PM CDT

I am happy to say that Aidan is home and flourishing. He gets quieter in the hospital, I notice. He stayed quiet all the way home in the car. But as soon as we got home, he started talking and laughing in his usual way. "Hey Mom, where are you??" he is shouting right now (he's in his toddler bed 3 feet away from me, so he isn't really wondering!).

Aidan's little brother Paddy is taking a little longer to snap back from his disrupted routine. He was cranky all afternoon, and is still a little cranky and restless now that he is sleeping! I guess most toddlers would be a little cranky after riding in a car seat for 240 miles in two days!

The preliminary results of the biopsy were good. No acute rejection, no hepatitis or easily diagnosable disease like CMV or EBV (both innocuous for most people, but more serious for the immune-suppressed). The liver tissue is going to San Francisco to be analyzed more thoroughly, so if he is having a mild rejection we will know in the next week. Anyway, for now all the news is good.

So, this weekend -- Aidan gets to go to his grandma's cabin and ride in the boat! We are so happy that this was such a short and easy hospital visit for him. We felt the prayers. Aidan prayed for all those who have prayed for him -- at least, I prayed, and he folded his hands together and listened.

Aidan is shouting, "Hey Mom -- I need covers!!" so I'd better close this journal entry now -- please look at "past journal entries" if you want the details of how the biopsy went, and missed reading them yesterday --

More later,
Willa (Aidan's mom)

Friday, September 24, 2004 9:52 AM CDT

Mostly good news so far! Aidan came through his biopsy just fine. There were a few glitches with the logistics of his admitting to the hospital, which set back the schedule a bit, and then there was the issue of pain management. Aidan is a difficult IV start and experiences MUCH anxiety around needles. The nurses did their best to minimize this with a sedative and local anesthetizing cream, but still, after 3 unsuccessful tries, everyone was pretty unhappy.

So the OR rearranged its schedule to allow Aidan to get his IV under general anesthesia. In future, that will be the default option for him at least, and possibly for all the day surgery kids. We now know how to request it, which we didn't before. That will make procedures far more tolerable for our five year old who has been through a lot of pain already.

Because of all this Aidan didn't have the biopsy until about 2 pm. He came out of it calmly, with no significant pain, and right away settled in to drink 7Up out of a syringe and watch videos. He nibbled at some food from a tray, and played with the motorcycle he got after the IV attempts. The only challenge in his recovery was keeping him lying down until four hours after the procedure was over.

Now we just have to wait for the results. I (Aidan's mom) need to bring the car by the shop this morning before zipping down the mountain to visit Aidan and Kevin, who stayed with him overnight. If there is no rejection, Aidan should be discharged today, and this will be a short episode in Aidan's medical life! Hope so! He kept saying while he was in the OR waiting room "Daddy, I need to go ride on the boat" so after he gets out, we are probably going to bring him up to Grandma's cabin for a mini-vacation -- which he has earned! : )

Thank you all for the prayers and good wishes,

More later,
Willa (Aidan's mom)

Monday, September 20, 2004 7:31 PM CDT

Aidan is scheduled to have a biopsy this Thursday. His liver enzymes are still elevated and the doctors want to rule out organ rejection.

He goes in Thursday morning for an ultrasound, then will be admitted to the hospital for the biopsy and the recovery time. If all goes well, and there is no rejection, he can leave the hospital on Friday.

Kevin (Aidan's dad) will be staying with Aidan overnight at the hospital. I (Aidan's mom) will update this journal as soon as we find out the results of the biopsy! It's our first hospital stay since February, so though we wish it were not necessary, we can't complain TOO much! I think that once the actual procedure is over (especially the IV start -- Aidan absolutely hates those) Aidan will have fun in the hospital, as he usually does, sipping 7Up and watching his Pokemon video.

But I think he will have even more fun getting into the car to go back ... home! There's no place like it! : )

More on Friday,
Willa (Aidan's mom)

Tuesday, September 7, 2004 8:10 AM CDT

In the last journal entry I (Aidan's mom) wrote that Aidan had had a CT scan for his head but the results hadn't come back yet. Since then we have been to see the neurosurgeon. Aidan's CT was fine! In fact, his ventricles were actually smaller than in the scan from February. That's good news!

Aidan thoroughly enjoyed the Catholic homeschool camping trip up in Northern California in July. He spent most of his time pushing his stroller back and forth on the little wooden bridge that went from the camp site to the parking lot. He got fantastically dusty and so did his little brother Patrick. It took several days afterwards to get them really clean again.

Aidan's liver enzymes are elevated again. The transplant team at UCSF has raised his anti-rejection medicine dose. We are getting labs today so hopefully there will be an improvement. Otherwise he is doing just great. He is showing interest in food and understands that hunger can be alleviated by it, which is new and good for him since often that is a foreign concept to a child with a G Tube. He shouts "Aidan, I need to feed ya!" and gets on the bed so I can hook up his feeding tube and give him a bolus of formula. He drinks a fair amount of it now by mouth, which is another good sign.

Aidan's uncle and aunt, Andrew and Heather Fortuine, were here from Canada this Labor Day weekend and we got to go to Yosemite with them. We all really enjoyed their visit. Aidan enjoyed this too.

More later. I will try to update again around the time of Aidan's transplant anniversary, which is the beginning of October. This will be his 5th anniversary. If you would, please say a prayer or two for the family of the young child who donated his liver and thereby saved Aidan's life. This is a difficult time of year for them I am sure.

Willa (Aidan's mom)

Sunday, July 25, 2004 7:25 AM CDT

Aidan has really changed in the past six months. He's gone from a frail 29 pounder who scooted around on his rear in order to get around, to a 36 pounder who is trying hard to run! The extra "tone" in his left leg makes it difficult for him to get to full speed, but he does pretty well!

He is playing more with his little brother Patrick who is now 20 months old. Patrick imitates Aidan faithfully and most of the words in his vocabulary come from Aidan. He even uses Aidan's walker sometimes and when he finds Aidan's brace lying around, he asks me to put it on him.

The latest medical news is that Aidan had a follow-up CT scan of his head. He has had no neurological problems since his shunt removal in January, but the CT was done to make sure his ventricles are unchanged. We won't hear the results until his neurosurgery appointment in August.

His liver numbers are still just a little elevated but are coming down.

Aidan's toilet training is coming along very slowly. His eating is much better, though; he asks for everything he sees his siblings eating, and the other day ate half a bowl of popcorn. Perhaps this will be the year he finally is able to make progress towards losing his G Tube which he has had now for over four years.

Next week we are travelling up north (me-- Aidan's mom-- and the 7 kids) to a homeschool camp-out. I am sure it will be an adventure since Aidan is still a wanderer, MUCH more so than Paddy; it will be a full time job keeping him within boundaries!

Last but not least, Aidan has a new baby cousin -- Declan Jack Ryan was born June 25th, which makes him one month old today!

More later,
Willa (Aidan's mom)

Saturday, June 12, 2004 10:16 AM CDT

I promised an update on Aidan around the time of his birthday. Well, ten days ago he reached the big FIVE.

He continues to do well. We are hoping for a family oriented summer and some time to visit the lake, go on some hikes, do some work on the outside of the house, and just relax!!

Next week, if all goes well, we will be going to San Francisco to the UCSF Liver Transplant Picnic. We have never made it to one yet. He is always having health problems when it is scheduled. It will be fun to see other kids who have made it through the ordeal of a transplant and their parents. Hope to see some of you there!

More later,
Willa (Aidan's mom)

Sunday, May 9, 2004 3:43 PM CDT

Happy Mother's Day to everyone, especially Aidan's grandmas in Fresno and Alaska!

Last update, around Easter, I wrote that Aidan was having no medical problems and was progressing fast in development now that he feels better. This is all still true, to our joy.

Aidan still can't count, but he recognizes almost all the single-digit numerals.

The other day he "read" a toddler book to me from cover to cover, even turning the pages at the right time.

He constantly asks "Mama, what's going on?" or "What time is it?" or, recently since his two brothers have had an active baseball schedule this spring "Mama, what time is Aidan-boy's baseball practice??"

He was heard singing bits of "Yankee Doodle Dandy" to himself (since his brother Sean is in community baseball Major's division and is on the Yankee team).

He constantly comes up when Kevin (his daddy) or I am doing something and hugs our arm or leg, saying "Gung! Gung!" which is his baby word for "Hug!" and was one of his first words.

He is finally eating a little more by mouth instead of by G Tube feeding. He regularly eats his anti-rejection med by mouth (he is down to one med twice a day, from about 6 several times a day) and he is now drinking part of his formula feedings. When he started wanting to drink his feedings, I called him a "baby kitty" because he lapped the formula with his tongue. But he changed that to "Big Kitty!" because he obviously thinks the baby in this house is little brother Paddy, not him! So now he says "Aidan-boy wants to drink Big Kitty formula out of little-big syringe!" (meaning the 2-ounce size syringe I use for his bolus feedings!)

I hope all this gives any readers some idea of what level Aidan is at now-- not exactly at Kindergarten-readiness stage, but coming closer, and how much his talk amuses and delights us now that we have a much clearer view into what is in his heart and mind!

(And soul -- a month or so ago when Father Eric was consecrating the host, Aidan said in a very audible, but reverent voice, "The Body of Christ"). He also loves to hang around Liam and me (Willa) when we say the Rosary and can now say parts of Our Lord's Prayer, which he does with great joy and enthuasiasm.

Last Mother's Day, Aidan was in the hospital in San Francisco, and I was driving back and forth to see him for over a month (his Daddy was staying with him there) -- he had his birthday there, and hid his head when the liver team sang Happy Birthday to him. He was anxious and never really felt good even when out of hospital. This Mother's Day is much more joyful, but whether he is doing well or poorly, Aidan is so precious to us that we feel very privileged to have him in our family. And of course, the same goes for our other six children! They are all miracles, but we realize it more day to day with Aidan because he has been through so much and we have come so close to losing him!

More later; probably on Aidan's 5th birthday I'll put up the next update,

Willa (Aidan's mom!)

Monday, April 12, 2004 3:52 PM CDT

Happy Easter to everyone!

There is no real medical news on Aidan these days, which in itself is good news! With no new neurological problems, and liver and kidney both working just fine, Aidan is putting on weight and flourishing developmentally. He talks ALL the time now..... a sample of his conversation "Hey Liam, guess what?? ---- "What?" "I have a question!" --"What?" and then the conversational loop starts all over again, since Aidan can't quite think of a question to continue the interchange. But he will get there, I'm sure!

Aidan tries hard to keep his lively 16 month old brother Paddy out of danger, saying earnestly, "All done, baby!" when Paddy is trying to turn up the TV's volume, or blast the water faucet in the bathtub, or any of the other things that toddlers do.

And every day, he wakes up wanting to go somewhere, "Mama, take Aidan-boy to swings." "Mama, go to Grandma's house." "Mama, I need you to take Aidan to appointment!" (that was his new idea for getting out of the house, just today!)

The first year after Aidan's transplant, our transplant coordinator told us that Easter would be a turning point for us -- indeed, a lot of his problems resolved around spring and he had several relatively smooth months after that. This year, again, it seems that the Easter season has brought peace and joy to our life. It's strange not to wake up every day wondering if we will need to bring Aidan down to the ER that night. I'm not complaining in the least, though! Last year at this time, Aidan was yellow from liver disease, wearing oxygen cannula taped to his face, and painfully thin except for his belly filled with fluid from his cerebral shunt. It's great to wake up these days and hear Aidan laughing, "reading" his books and proposing plans for the day instead of crying, with his oxygen meter alarming, and wanting only to lie around watching videoes, like he was last year.

A happy Easter to everyone reading this. There are some new pictures in the photo album courtesy of Grandma Ryan. We keep the intentions of all those praying for Aidan in our prayers.

More later,
Willa (Aidan's mom)