MRI

I forgot to tell everyone that our MRI had to be rescheduled.  I still don't know when we are going to have it, although, we have scheduled David's next EUA for July 14.  

David's eye is healing very fast this time.  It was only swollen for about 24 hours, and now, it just has a few red spots in it.  It isn't tearing up quite as badly this time either.  

David has started to walk.  He still doesn't do it all the time, but over the past few days, he has been doing it more and more.  Life continues to change.

I will update again later.  We are going to be spending the later part of next week at the beach with my Aunt from New Mexico, my Grandmother, and my parents.  It will be a nice vacation that none of us have had in some time!

-Kim

One

Friday, David turned one year old.  He also had another exam.

The whole day went very smoothly.  David did spectacularly as always, and the flow of the operating room was smooth, so we didn't have to wait very long.  

The doctor found a very small spot that he decided to cryo again.  He seemed extremely pleased with the progress from the last time we were in.  We have to go back in 4-5 weeks, so that is a little longer than last time.  The only sad news was that he told us that if he needs to cryo again next time, we need to sit down and talk about the risk/benefit of continuing to cryo an already blind eye.  So, that is kind of hanging over our heads until then.  I don't know exactly when that appointment will be yet.

David is doing very well.  He caught a cold at the hospital, so he is very congested, but his eye looks great.  It didn't swell up like it has in the past, and each day it looks better and better.

I will keep you all up to date on other appointments.

-Kim

Appointments

Hi there! I just wanted to give you a little update on us. David is doing very well right now, and has even slept through the night two nights in a row, so I am hopeful that this will become a habit! He has had some tastes of table food, and now resists eating baby food, so that has been a challenge. He still doesn't really know how to chew, so I have to be creative in finding soft things that he can eat.

His eye is still not back to normal, but I didn't expect it to be yet. It still waters a lot - especially when he is in bright light.

He will have his next exam on Friday, May 30 - his first birthday. Then on June 2, we will have a follow up with the oncologists and also have an MRI to make sure that no cancer has made its way into his brain. This is mainly a precaution and not a proceedure that we are doing because we suspect anything. Still, we will likely be very nervous until we get an all clear result.

The doctor at Duke reccommended that we get both of the big kids' eyes check out. Isaac was first in line. Thankfully, Isaac cooperated extaordinarily well, and the Doc said that his retinas were "beautiful". Hannah get to take a turn in June, but we aren't expecting any problems. Usually retinoblastoma is found before the age of 5, and Hannah is 6, so it's unlikely that we would find anything, but better safe than sorry.

The other members of the family are doing well. Isaac's preschool is about to end. I think he has one more week to go, and then his summer "break" will start. Hannah goes until June 11. Then I think we will be having a visit from my Aunt Jeanne from New Mexico - those are always a treat. We have a family trip to the beach planned for the July 4th holiday, and my 10 year high school reunion is also coming up. And, as always, we will have the regular doctor's appointments for David.

Well, I must go, but we appreciate you all taking the time to stay updated with us!

-Kim

Update

David has been healing well since his last little bit of cryo. His eye lid is a little droopy now, and it tears up a lot. He will often have tears running out of that eye. I think this is supposed to clear up, but it is something that we will be speaking to the doc about next time we see him.

Our next appointment will be on David's birthday, May 30. I think this may also involve a trip to the oncologists for a follow up, but we will see. Hopefully the news will be good that day.

I am feeling a bit run down these days. Maybe all that the last year has held is now beginning to sink in. I am coping alright, but find myself much more ready to go to bed at night than ever before.

David is in the process of weaning. I need to find a way for him to sleep through the night, so that's a dilema. I have gotten very few full nights of sleep since he has entered our world, so I am looking forward to that. I am hoping that a little less dependence on me will encourage him to sleep better.

Well, I must be quick as I need to go pick up Hannah from school! Thanks for reading!

-Kim

Encouraged

David had his exam this past Monday as scheduled. It was a little more encouraging than the past few have been.

The Doc found some remaining spots, but he really felt that these were old spots and not new ones that had formed since the last exam. He did some fairly extensive cryotherapy on these which also included a small incision so that he could get a better angle on the spots with the probe. We don't have to go back for 4 weeks this time, so that will be a nice break for us as well.

David did spectacularly as normal. We had to wait 3 hours for them to come and get him for surgery becuase the opperating schedule had been backed up for some reason. He didn't fuss or cry, but just played happily with Rob and I until they were ready for him.

He has been in a significant amount more pain this time, though. Yesterday was a very rough day for him, and he was very fussy and refusing of naps. His eye has had a lot of discharge this time too. Overall, he has been bothered more by the surgery (not surprising). He rubs his eye alot, and I have to be sure to get the ointment in it so that he doesn't get an infection. This takes all my strength, and even then, I think I miss most of the time. But I am trying. It will be nice for David that his eye will have one extra week to heal before we have to go back in, though.

Last night was a tough night. David didn't sleep much, and even when he did, it was restless. Today, overall, he has done better than yesterday, so we are hoping for a better night tonight.

That is all for now, but we do thank you again and again for all your prayers. They are so dear to us.

-Kim

Next

It has been difficult for me to find enough time to sit and write lately. I appologize.

David's next exam will be this coming Monday, April 21. I dread this one a little more than usual. David didn't do quite as well coming out from anesthesia last time as he normally does. He was much fussier, and very sleepy all day long. I am hoping that it was just a one time deal and that he goes back to his quick wake up next time.

He has healed quite well from the last cryo. His eye is just slightly bloodshot still, but other than that, you wouldn't know that he'd had anything done. He is such a happy boy. His newest trick of the last few days is standing without holding on to anything. He even lurches forward from that position like he is going to walk. So far, it hasn't worked out so well, but it will be soon! He is quickly learning his way around table food, and seems to enjoy that. I am glad for this since it allows others to get in on the feeding action, and gives me a little bit of a break.

Well, the crying I hear tells me that it is nap time, and I must go. Thanks for keeping up with us. We appreciate you all.

-Kim

Puffy

On very short notice, David had another EUA yesterday. The doctor found another spot, smaller than the ones last time, but this one didn't have as much time to grow as the last ones. He did a little more cryotherapy, so David has a puffy eye again.

We are supposed to go back in 3 weeks for another exam, possibly more cryotherapy.

The anesthesia seemed to effect David more this time than it ever has before. He was extremely groggy all afternoon, and it took quite an effort for me to get him to drink anything. Eventually, he took some milk and then started to perk up.

The doctor has pretty much let us know that this cryotherapy is the last ditch effort before removal of the eye. He said that we will "cryo until we can cryo no more", and then we will have to think of the next step.

I would love for David to be able to keep his eye since it would look much better than any prosthetic that they can produce, but more than that, my prayer is that his left eye will continue to stay healthy. I pray that there will never even be the hint of a tumor in that eye.

That is where we are for now. I am tired since we had to get up at 4:30am yesterday morning and it was a long day, but I think I am in good spirits.

Talk to you again soon,
-Kim