Friday, July 25, 2008


Overheard in an Old Navy changing room:

"Daddy, I hope you aren't going to take off your underwear, too. We don't want anybody to see your penis."

(Yes, that would be the girl...Daddy will no longer allow 4-year-olds to accompany him when trying on new clothes.)

Tuesday, July 22, 2008

Favorite Twin Pix

I think most of us will admit that we tend to read blogs of people that we have something in common with - I love reading twin blogs, especially boy-girl twin blogs. I always enjoy reading Matthew's column - and he has a contest for a double stroller going on right now. While we are on the edge of not needing strollers, we do have a Disney vacation coming up in December in which we will need a good, lightweight stroller. And, if we don't win, I still always smile when I see these pictures...

I'm throwing in a few pictures here - just because I can...

First, my favorite - "Tale of the Two Twins"

For those of you who know us, I'm sure you'll attest to the fact that there probably isn't a better picture that more accurately portrays our children's personalities.

And, then there is the "I had that!" picture...

Which, of course, should be followed with a double time out...

But, it's not all bad - twins have a special bond, too...

When they were infants & we would lay them near each other, they'd always end up nose to nose.

And, like they've always said - Twice the Love...

Monday, July 21, 2008

Neurosurgeon Update

Back from the neurosurgeon. I am very happy to report that he is much better than the neurologist. The neurosurgeon didn't know who the neurologist was - just that he was a new resident.

Tanner’s cyst is large for a cyst in this area – but not atypical of other cysts that they see in the brain. The cyst is pressing on part of the brain (maybe it was brain stem) that controls visual stuff – but since Tanner doesn’t seem to have any visual problems, he thinks that it has been that way for a very long time. He said if this stuff happens young enough – kids tend to compensate for it, and he thinks that may be the case with Tanner. The cyst is not blocking the channel for cerebral fluid between the ventricles. As long as it does not grow, does not cause any hydrocephalus, or vision problems – then we’ll continue to monitor it.

We’re doing a follow-up MRI in 3 months. He was going to do it in 6 months, but this cyst didn’t show on previous ultrasounds (from Tanner's NICU stay) – so he is concerned that it may still be growing. So – we’ll do a follow-up MRI in 3 months (mid-October). If Tanner develops any other symptoms that it may be growing (dizziness, unexplained vomiting, vision changes, hearing issues, or headaches), then we’ll be back at his office for some kind of treatment (probably surgical).

He said that typically they don’t “remove” the cyst – they drain it by puncturing multiple holes in the side of it so that it doesn’t reinflate later on. Access to the cyst is typically by ERCP through the nasal passages.

And, a final note – he doesn’t think that this is cancerous. It doesn’t display any of the classical signs of a cancerous tumor, so he said he was “very, very certain” that it wasn’t cancerous. However, they can’t be 100% certain unless they do a biopsy.

I was kind of hoping that the MRI could be after Disney trip in December, but that would be 5 months – so we’ll probably aim for mid-October. The good news is that we’ll do the MRI first thing on a Monday morning – and then we’ll see the neurosurgeon later that morning for a follow-up. We’ll know something that same day (which makes me very happy).

St. Louis called this afternoon - they agree with the diagnosis from the Denver doctor. They were even willing to let us go up to 6 months without follow-up. They also believe that the dizziness is not related to this cyst - and it was found incidentally.

Thank you for the prayers and continued support.

Saturday, July 19, 2008

It's a Twin Thing

I updated about Tanner's condition in my last post, but I'd be forgetting half the story if I didn't talk about Morgan, too.

When you have twins, you have a pair. They are the same age - so typically they get to do the same things and spend so very much time together. Mine have only physically been apart a handful of times - they spend more time together than they do with either one of us.

As we explained to Tanner what an MRI would entail, Morgan was listening intently. She had many questions - how long would Tanner be asleep and would we be with him (she did not like the fact that Tanner was in the MRI by himself). Due to the timing of the MRI, we had to physically take her with us to wait in the hospital.

As I went into her classroom to pick her up on Wednesday, one of her friends had a pretend otoscope up to Morgan's head and was "looking at her brain". She also asked if pictures of Tanner's brain would be considered an x-ray.

When he was in the MRI, she had lots of questions - why, how long would it take. When we went back to his room while he was waking up, she was very distraught that Tanner wasn't awake yet. In fact, she kept asking to sit beside him - and when he did start waking up, it was probably due to the fact that she kept rubbing his back.

She continues to ask many questions about why Tanner needs the MRI. And, Friday morning when she woke up, she was crying. When I asked her what was wrong, she said that she was very worried about Tanner. We've said nothing in front of them, I can only guess that she has picked up on our mood.

We see the bond they grow older, they do things more independently, and there are times when they want to be by themselves. But, we also see this level of concern and care, frequently, too. Morgan always wants to hold Tanner's hand when we're out and about - and when they leave each other's company at daycare, they always leave with a hug and a kiss. I'm somwhat envious by that closeness that they have - and I hope that we are able to foster that love so that they'll always be built-in best friends.

How to get doctors to listen

This is my 200th post - wow - I wish I had something more fun to update on...

When I look at this picture - it's hard to imagine all that is going on in that head of his...

Tanner had an MRI on Wednesday without and with contrast. Preparing your 4-year-old son for an MRI is not such a fun thing - but I have to admit, he was such a trooper about it all. We explained to him that the doctor was going to take pictures of his head with a special camera. We told him he'd be getting an IV (how many 4-year-olds know what an IV is?) and that he'd be asleep when they took the pictures. We also told him that he couldn't eat anything after breakfast.

Wednesday morning, I went to work late and made him waffles, bacon, & yogurt from breakfast. He asked for a snack a few times - but generally was pretty good about not eating. (We were really amazed, Tanner is our eater and will graze all day if given a chance.) Instead of lunch, Tanner got to go to Target and pick out a new toy. He was absolutely shocked that he would get a toy - we've never really indulged him like this beforehand.

At the hospital, he did pretty good. We waited over an hour in the waiting room - and then they took Tanner & I back to get things started. It took 45 minutes to get his history before we went back and he got the laughing gas. It was worse being stranded in that little room than anything else.

After the MRI and while Tanner was waking up, the neurologist came in. Now, let me state a few facts. We got a very quick appointment at St. Louis' insistence with the nuerology staff. When you do this - odds are that you are going to get the newbie or the runt - and neither one may be a good fit for your circumstance. We got the newbie. He came in and told us that this was a cyst (better than cancer), and that it was pretty large. When we asked him what that meant, he said "I don't know, I've never really seen anything like that. You've got an appointment with the neurosurgeon next Monday at 11:30 a.m.".

We went home - and were briefly elated by the good news. Not cancer! Yay! On Thursday, Randy went to pick up a copy of the MRI and results (as "medical parents", we like to keep copies of these sorts of things - especially when coordinating care in different locations). Then - we looked at the MRI.

He's got a really large cyst - 2.7 cm - nearly round. They'd classified it right now as a pineal gland cyst. The pineal gland is only 8 mm - about the size of a pea, while his cyst is nearly the size of a marble. Having no good avenues for information, we turned to our friend, Google.

Pineal cysts are actually quite common (good news!) and usually they are asymptomatic and don't need to be treated (yay!). But, they are usually much, much smaller (less than 1 cm). Everything that I saw that referred to a cyst of this size required surgical treatment (either drainage or removal). And this cyst - smack dab in the middle of the brain - not easy to get to... So, the nightmare started again.

On Friday, we woke up determined to get some answers - because we both knew that we couldn't make it through the weekend without some answers. We are so very blessed to have a transplant center that takes the best care of us. Even though Tanner's liver functions are 100% normal, and this isn't a "liver thing" - St. Louis has been beside us the entire time. They've done research - and they are currently having his MRI reviewed by their radiology and neurosurgery team. Very comforting since we know that St. Louis is one of the top Neurosurgery teams in the United States.

But, I also decided that we were being seen in Colorado - and they needed to give us the same level of care. I managed to get ahold of the Neurosurgeon's nurse on Friday - I explained to her what had happened, that we had been given very little information, and how unimpressed we were with the neurologist. She was wonderful - considerate, helpful, and she promised we would talk to someone today.

The neurosurgeon called Randy Friday early afternoon. He had only had a brief chance to review Tanner's MRI and he hadn't measured it himself. At this time, based on the information he had, he is leaning towards monitoring it in the short term - but we'll know more on Monday. He feels strongly that this is only a cyst - and is not cancerous. He does not think it is related to the dizzy spells that Tanner has been experiencing (they are mostly resolved now).

We've able to take a deep breath this weekend - but we know this fight isn't over. And, we also know, that regardless if it means traveling to St. Louis or Baltimore or staying here in Denver, we're going to do what is right for our son.

Through all of this, Tanner continues to be my hero. He held perfectly still for the CT, he hardly complained about going without food for the MRI, and he was (as he always is) the ideal patient. He continues to laugh, smile, and give us his "moon hugs" and brings us so much joy.

Tuesday, July 15, 2008

Breaking the silence

It's been a long few months, and this certainly isn't the kind of post that I wanted to break the silence with. However, it's 10:30 at night, and I need to let it out somewhere.

Last Thursday morning, Tanner woke up and couldn't walk. We found him at the base of his bed crying because "the bed made me fall down". Since Tanner's blood sugars have been running low, I immediately took him to the kitchen and started pumping him with honey, orange juice, and other sugary substances.

We decided to go ahead and take him to the ER. They ran a few tests - and agreed with us that it was probably hypoglycemia and to call our general practicioner or transplant group to get a glucometer and start monitoring him.

Friday morning - same symptons - but this time we have a glucometer, so I take his blood sugar and it was 93 - which is completely normal. Back to the ER. They did some neurological tests - and recommended that he see a neurologist. Although, his conditioning was improving and they didn't think that it was urgent.

Same symptons on Saturday, Sunday, and Monday - but gradually getting better. Today, however, our transplant coordinator Penny called. She really stressed the importance of having him seen sooner rather than later. With much persistence and begging, we scored an appointment for this afternoon.

At the appointment, Tanner had the doctors stumped. They felt like this might just be a simple viral infection - but wanted to do a CT scan "just to make sure". They didn't think they'd see anything on the scan.

By the time we made it home, they had seen a pocket of cerebral fluid in the middle of the brain and they want to do an MRI as soon as possible. We've got one scheduled for tomorrow afternoon.

I'm scared - scared shitless, quite frankly. Google is not your friend in circumstances like these - and my google searches aren't revealing anything nice. They are revealing things like tumors and cancers - I've been through a liver transplant. I don't want to have to go through anything else. I'm hurting...I don't enjoy being the mom with a chronically ill child - we don't hide Tanner's transplant, but we don't want to let it define him. It was "easy" going through the liver transplant with a sick baby - who couldn't voice their opinions, who you didn't have to explain procedures to. I spent an hour tonight explaining an MRI to my child - how will I explain additional tests and procedures that may come along. How do you explain to a child that they are sick?

I'm praying that it doesn't come to all of this - but I'm scared shitless that this isn't headed in a good direction.