7.7.09 - Now We are 24

We celebrated James's 24th birthday with family and friends at Chili's. As he usually does, he ordered "beef and chicken fajitas with no sour cream, double glockamoly". He ate a lot of chips before they came, though, and could only eat one tortilla full. He will have the rest tomorrow at his day program. He was full enough that he even turned down a cupcake. We were all surprised when he managed to blow out all 24 candles with one puff.

"Stable" continues to be the word. James has had some "nausea-plus", but not any serious episodes of seizures. "Transfers" (i.e., from car to wheelchair, from bed to chair, etc.) seem to be better; James seems to have better leg strength. Lately he has been talking more (and asking for more). He wanted 24 presents since he was 24 years old, so the presents were tiny. He got several new card games and a "Trouble" game where the die is in a popper and does not go all over the room. This idea's time came a long time ago.

Thank you for continued prayers for our angel. B

6.10.09 - "Stable"

I guess "stable" is the word of the day lately. James has not gotten worse in any way, and in some ways he is getting better, a little, very slowly. Last Friday Michael walked him in from the car, and that has not happened in months. James is starting to show more interest in food and even going to the grocery store. Last Friday he was worried about "Doritos in the red bag" and "blueberry muffins". He would mention every ten minutes or so that we needed to go and get them, and he wanted to go when the time came. He wore himself out on Sunny D recently, so we have a whole case here.

I am grateful to you for your prayers and support. James is still cheery and loving. He has little rashes and infections that require trips to the doctor. The last time we went for a feeding tube replacement, they gave us an extra, and one of the caregivers can replace it if necessary. There are many small annoyances, but the good news is that James is well-nourished, eating "recreationally", comfortable in the new wheelchair (green again - his favorite color these days), and social. I'll try to update again soon. B

3.27.09 - The good news is ...

James is not in any pain.
He sleeps a lot.
He has been pretty close to seizure-free.
He still has a ready smile for his dad and his friends. Recently I realized that James cannot smile insincerely; if he smiles, he beams.
He can still eat Cheetos and drink through a straw some of the time.
When he needs something, he will tell us.
He has wonderful caregivers and lots of people who love him.
He believes in and loves the God we also adore, and we know that He will work James's situation for His good and His glory.

We will be getting a new wheelchair in the near future. James needs one with a reclining back, since he can't sit up straight on his own anymore. A harness to hold him up was deemed inappropriate because of James's scoliosis. (We've known about that for years. In the grand scheme, it's minor.)

James had a bunch of friends visit his house recently. He had an "open house" for his supported living agency, so potential clients could see how it works. He made sure and told us about his friends' coming.

Mostly James has been making it to his day program and eating solid food. We substitute tube feedings when he is weak or asleep. He's lost abot 4 more pounds this month (127). He has a little runny-nose virus right now and will stay home tomorrow.

James may get a a special, slide-in-and-out bathtub chair, since no one can really transfer him anymore into or out of the tub. He may also get a speaking device like a friend of his has, since he does not talk much anymore. His care agency is ramrodding these projects.

James's mom and dad are making sure he is loved and safe at all times. We don't think we will ever do better as far as seizure meds go, and he may not ever be any stronger. His needs are many, and yet they are mostly simple, and they are met. I don't know how to tell you to pray for him; there are no crises, but he grows weaker.

Mary and I were talking about the so-called stages of grief. We were in denial most of James's life in one way or another. We were angry when we couldn't get what we thought was appropriate diagnosis and care. We bargained with God a lot; I can't tell you how many times I offered myself as a substitute. I think I went through depression (stage 4) earlier than Mary; she is still having a very hard time. We will be ready to accept James's fate, whatever it is and whenever it comes, but we still pray for our own strength and that James remains happy, pain-free and very obviously loved.

Words fail me, but I know God's love does not fail. Keep praying. B

February 21 2009 - Lost some ...

James has had a number of appointments recently. The GI doctor says he probably has some gastroparesis (partial paralysis of stomach muscles, which accounts for nausea and vomiting, and yes, I spelled it right the first time). The neurologist was encouraged by James's lack of seizures and was afraid to lower his doses since he is doing well in that area. Mary was encouraged that there were answers to our questions, and that the neuro said he was doing better than expected, but poor James is so extremely doped all the time.

Gastro doctor said to check residual in stomach and remove via tube if it did not drain on its own. We did that over the weekend, and James's stomach was behaving normally. He was still coughing and retching, even though the stomach was empty. So much for that.

Last Sunday (2.15) James had his first big seizure since Christmas Eve. Mary automatically gave him a dose of Ativan that was probably more than necessary, since he has not had any in a long while. By Wednesday James was more perky and responsive when Mary saw him. This week he weighed 131, which is a healthy weight for James, but 10 pounds lighter than last month.

Next week, the wheelchair vendor will come to measure James for "modifications". He has a fixed-back wheelchair, but now he is too weak to sit up on his own. Probably he will get a harness that will help him sit up. At home or here, he is in an easy chair and can recline.

All I can do at this point is love him and pray for him. I am not functioning at a normal level; I sleep a whole lot and keep very odd hours (note time stamp; this is early). Mary manages better, but she is also tired and depressed. Please pray for us all. Thanks, B

1.21.09 - Due for an update

James had five trips to the ER in December and has already had one in January. Three times he was in "status epilepticus" (sp?), i.e., seizures would not stop even with the meds we gave him. After two hospitalizations, James's anti-seizure meds were increased significantly. Since then, we have taken him twice for uncontrolled vomiting and once to replace a broken feeding tube.

The nausea has flared up a couple of times recently, but James has not had any significant seizure trouble (probably some "absence" or "petit mal" activity, but nothing that goes on and on) since Christmas Eve. He has been going to his day program, where he plays games and visits. The downside now is that he is kind of zombie-like: sleeps a lot, can't really pay a whole lot of attention. This is sad, but at least we know he is not in any pain or distress.

Sometime back, someone wisely pointed out to me that James's seizures do not cause him any suffering; when he has them, he is unconscious, and he does not complain of pain afterwards. The nausea and vomiting are a different story. He bears up pretty well and does not complain even so, but there's not much quality of life for him.

We will be meeting with his caregivers and caseworker on Thursday (1.22) to discuss his current state and where we go from here. It may be time to find a more medically-capable group home for him or something. We gave James back to God a long time ago, and we trust Him to do the right thing, but we get pretty depressed seeing James in this state, and we keep praying that James will not suffer whatever else happens. He is just as full of love as ever, but he needs a whole lot of help. Keep praying for all of us, please. B

12/14/08 - Well, here we go again ...

We had been doing so well. James had the occasional blip, but he had not been hospitalized since January. (We had several trips to the ER to replace his feeding tube; they tear and the plug breaks off.) We even got brave enough to take him to Texas for Thanksgiving. We did not take his feeding pump, thinking he had been eating well and was unlikely to need it. I guess it was a mistake; he got constipated and threw up for six days. When we got home, we took him to the ER, where they changed his anti-nausea meds and gave him two liters of fluid. So far, so good.

A week ago on Saturday, James started having continuous seizures - 25 minutes. We called 911 and were taken to the local ER. The paramedics pumped him with everything they had, and he was still seizing. At the ER, they threw the kitchen sink at him and finally got the seizures to stop. They did a culture to see if he had an infection (a little foreshadowing for your entertainment.)

Well, so they admitted him in Walnut Creek, once he was transferred up there. The doctors there made some more adjustments to his meds, and he hadn't had any seizures through Wednesday, so he came home. He actually went to his day program on Thursday and Friday, and felt great. He called me a couple of times and I could his happy voice (higher than his not-so-happy voice, and sounds like he is about to start giggling). Labs discovered some bacteria in one test, but a retest showed nothing. They assumed the bacteria from the first time was from the IV needle insertion.

Yesterday (Saturday, 12/13), he started having seizures again. This time, Mary drove him up to Walnut Creek herself. They got the seizures stopped easily (danke schoen, mein Gott!). The local ER had completed its culture, however, and the bacteria was definitely something. James is now on antibiotics. He was admitted to Kaiser Walnut Creek last night. Mary is there with him, and some friends may spell her tonight so she can come to the Christmas program where I am playing bass. We'll see what happens; Mary is generally there unless she cannot be, and this week she has another musical and attendant rehearsals, so I may have to spell her.

Please pray for us all. Mary has been and remains exhausted, and I am never a peak performer anymore. I take a real mental dive when James is in the hospital, and the role of "very sick child's dad" is just too heavy for me right now. Pray that this will get handled and James can settle back into his routine. I keep wondering if this is the beginning of the end, like we thought the last time was.

Here's a picture of a happy group in June. Thanks for your concern and prayers. B

7/1/08 - 143 pounds????!!!

More than one of you have mentioned to me that I have not updated this blog in quite a while. In this case, no news is good news. Thanks to your prayers, James has come a long way back from his nadir in August. Many things are back to normal: he is living at his own place with caregivers, he's about to start a day program again; and he is eating like there is no tomorrow! In connection with his new "school" application, Mary took James to the doctor, and he topped the scale with an all-time record: 143 pounds. We knew that his arms and legs and face were fuller, that he was eating well, that he was quite a bit stronger, that he even had a little tiny bit of tummy; but 143 pounds? Before all this began, his maximum was 125. In fact, the doctor is doing some tests to determine whether he is retaining fluid for some reason. His ankles look a little puffy from time to time.

Another change: on Monday, James and Mom went to Taco Bell, and James asked for one order of regular nachos, not four bean burritos with no onions. One of his new favorites (enjoyed before, but eaten much more often now) is a "breakfast sandwich" from Jack-in-the-Box. In case you need a recommendation, it is whichever one has the most meat on it. Also, I have now been to Chili's twice with James when he did not order "beef and chicken fuh-heetas with no sour cream, double glockamoly". He likes the little cheeseburgers (and so do I).

Physically, James is much stronger, but he is not walking like he used to. When he gets up, he can walk under his own steam with just a steadying hand/safety net. We are hoping and praying that this gets better; I think it will. James has big plans for his birthday on July 7 (23).

James's parents are much better. We got to go to Cabo San Lucas for a week, and James did not have a single seizure while we were gone. (He did call us from his cell phone a few times; can't wait to see the roaming bill.) Again, thank you for prayers, and I will try to update again soon. B