Foto Friday - Project 356 Days 232-238

232 - 8/20: I know it's not the best quality photo. In fact, it is a screen shot of a second in a video of Greyson going around and around our luggage when we returned home from NM. He was having so much fun but it happened so quickly I didn't get a picture ... this was the next best thing.

233 - 8/21: Eli was lost...for  two hours we didn't know he was sitting here waiting for us to come back... and this is how I found him. Not sure how I missed it, but Greyson decided that Eli needed to find his own way home on our Sunday run. Glad it was a quiet morning and no one took him or ran over him.

234 - 8/22: Ready for school...teachers are back in session so not only am I packing Greyson's bag for Ms. Amy's but also packing mine (so that I won't have to eat school lunches).

235 - 8/23: Tummy Sleeper - Greyson has been doing pretty well sleeping through the night (I almost don't want to say that out-loud). Think it has something to do with sleeping on his belly. The cutest is when we find him with his butt sticking in the air.

236 - 8/24: All Smiles - it is too cute to hear him talking to himself in the mornings. Then to look over and see this smile is the perfect way to start the day.

237 - 8/25: Another bathtub smile and those eyelashes.

238 - 8/26: It's not about the paper and boxes anymore....finally he realizes there is something in them. Thanks Matt for his Halloween costume.

Foto Friday - Project 356 Days 225-231

225 - 8/13: First trip to Krispy Kreme

226 - 8/14: "hmmmmm what's in there????"

227 - 8/15: We get the sweetest smiles in the bath. This boy really loves water.

228 - 8/16: First flight - not a great shot of G but loved the effect of the sun coming through the window and the flare effect it created. I didn't touch this one up at all.

229 - 8/17: Playing in the rocks.

230 - 8/18: At the races. Can't believe my iPhone stopped the action this well.

231 - 8/19: Think Greyson might be able to talk Gramps into getting one of these for him.

Why Wednesday - So Far

WHY do long runs feel so far away?

Over the past month I have been taking a break healing and in the process have lost quite a bit of my fitness level (legs and lungs). Last week I was in the mountains in New Mexico and at one point I thought my lungs were going to explode on a short 3 miler.

It was great being on vacation and finding a beautiful trail through the evergreens with deer, squirrels, and hilly Scottish golf course in the middle. Next time we have to take Greyson hiking. He loves the outdoors, trees, and animals. He would love it.

Looking into the near future, I really want to run the Tulsa half marathon (was planning the full before injury) but it feels so far away from the miles I am putting in now. Right now 4 miles is the longest I have gone and I don't want to add miles too quickly and re-injure anything but I feel out of the loop. I need a plan. Maybe tomorrow I'll map it out.

Run On!
Brooke

Foto Friday - Project 356 Days 218-224

218 - 8/6: Entertaining Grandparents is so easy. You wouldn't believe G had been in the hospital the 3 days before.

219 - 8/7: Tralaine and family stopped by and tried to steal Greyson....and he was ready to go.

220 - 8/8: Need eggs!

221 - 8/9: Enjoying Grandma B's new sports car.

222 - 8/10: RAIN!!!! finally!

223 - 8/11: Is that paint or hair dye?

224 - 8/12: The best seafood tostada around....La Altena rocks!

Foto Friday - Project 356 Days 211-217

211 - 7/30: The Keck's come to visit.

212 - 7/31: 1st Popsicle

213 - 8/1: A negative X-Ray is a good thing (check out my Journey to 26.2 blog if you want to know more).

214 - 8/2: Waiting room entertainment now includes coloring. Most of the time the crayons go on paper but sometimes they go in the mouth too.

215 - 8/3: Waiting for the MRI. We pushed G back and forth through this hallway to keep him entertained. FYI you are seeing 1/3 of the hallway behind Michael. Imagine lots turns.

216 - 8/4: Strawberry lemonade is never this good at home.

217 - 8/5: The perfect patient is ready to go home.

Foto Friday - Project 356 Days 204-210

 

204 - 7/23: Reading with Papa Charlie

205 - 7/24: Nana let's you do anything - even bite her finger.

206 - 7/25: In Memory - O.C. Rider

207 - 7/26: The best way to have asparagus. Yes, that is bacon!

208 - 7/27: Fun with friends and Incredibooth App($1)

209 - 7/28: Don introduced me to One More Cup at 75 and Wornall in KC. Yes that is a oatmeal scotchy for breakfast.

210 - 7/29: Another picture G will probably kill me for posting but this was too funny. He loves to run around before bath time.

Still Waiting for Second Opinions - Update

It seems that second opinions don't come quickly and we are practicing our patients. We have in requests to the Vascular Anomalies clinic at Boston Children's Hospital and Waner Children's Vascular Anomalies Foundation in New York. We also hope to get a request into a group of doctors at Nationwide Children's Hospital in Columbus, Ohio. With all of these doctors looking at Greyson's case we hope that someone will have a plan that is best for him.

In the mean time, Greyson's arm is improving little by little. He can now push off with his right arm and tries to use it most of the time. His wrist is still not working for him and his fingers don't have much strength but he can grab onto things and it doesn't slow him now much.

We are waiting for an appointment for Greyson with the Brachial Plexis Clinic (a group of doctors that work with kids who have nerve damage in their arm) in KC on Sept. 1. We took him to the lake today and he loved it. Next week Greyson and I will be going on his first plane ride to New Mexico to spend some time with Grandparents.

Take care. We will share more when we have more information. Thanks for the support.
Brooke (Michael & Greyson)

Why Wednesday - Why Run?

Why would anyone ever want to run? Maybe someone is chasing them?

Ok, so that is not how I feel but after taking off almost 2 weeks I feel like a non-runner more than ever and that would be the goofiest question non-runners ask me.

My goal was to do some swimming and biking instead of running and all I can say is I have gone on one bike ride (tonight). With family visiting, Greyson in the hospital, and then planning for my first training session with my new teachers, there has been very little time to exercise or even think about the fact that I can't run. But now the temperature is getting better and I hope to have more time so the feeling that I am not a runner is creeping up more often than not.

My leg is feeling better. It hasn't hurt since last week. The standing on the hard hospital floors just wasn't good on it. Being home has improved that and I am hoping that it is getting better. My running friend/chiropractor and I talked and think it may not be a stress fracture. It may be time to test it out. I think I will try to go out on Friday and attempt a mile. If it hurts, then I will take off another week or two and test it out again. Fingers are crossed again.

Hoping to join Chanti soon. She is back at it just 5 weeks after having her beautiful little girl. Yes....she's awesome!!! I have to get on the road soon so we can push our strollers together :)

Run On!
Brooke

Monday Appointment

We just met with Dr. Jiang and have decided that sclerosis isn't going to be the plan of action today. Because Greyson hasn't had considerable improvement in his ability to use his arm/hand it isn't a great idea to cause more inflammation to the area and possibly cause more problems. Dr. Jiang feels that getting the second opinions from Boston and New York will help decide the plan of action. He is going to have the drain tube taken out in a few minutes and then we will go home. Now we wait and hope he is able to use his hand more each day. Greyson has an appointment with a nerve clinic on September 1. We hope to learn more soon.

Greyson doesn't seem to be in any pain. If you saw his smiling face you wouldn't think anything was wrong. His arm and chest area are a little swollen but not too bad. He is as happy as ever (has been the whole time) and has figured out how to work around his arm issue. He can use his shoulder but he can't lift his wrist or extend his fingers. He can grip with his whole hand but cannot touch his fingers and thumb together. His arm seems weak in general. What we have been told is that when nerves get damaged it takes time for them to fix themselves. We hope that will be less than more.

We will post as we learn more. While this is a surprise it is not unexpected for Greyson's condition. There is no way to fix what he has but we will deal with things as he grows. We do look forward to the day when he can tell us what is going on.

Thanks for everything.
Brooke, Michael, & Greyson

Home for the Weekend

The doctors have all been in for rounds this morning and here is where we sit...

We are breaking Greyson out sometime this afternoon. Dr. Jiang and the radiologist are good with us going home for the weekend since we have experience with drain tubes. We will monitor his use of his arm/hand and come back Monday for sclerosis if all is good. If not then we will come up with plan B.

In the meantime, Dr. Jiang is looking to get a second opinion from the Boston group and we are trying to get a third opinion from a doctor in New York. With the new growth inside the shoulder/collarbone area being so close to other things like nerves then they need to see what other interventions might be available.

We are waiting on one last consult from neuro and tons of paperwork so might me out of town before rush hour traffic. Greyson is in a great mood and ate like a horse this morning and is napping now. We will update as things happen but hopefully that means when his mobility is back and after sclera on Monday.

Take care of yourselves. Thanks again.
Brooke & Michael

Time for Sleep

Greyson just fell asleep after a fun night with food and a set of grandparents to entertain. This gave Michael and I some time to go pick up some clothes and have a good meal. The cafeteria wasn't cutting it today.

Greyson had the procedure this afternoon and the radiologist was very happy with the results. They put Greyson under and then, using ultrasound, found the large cyst under/behind his collarbone and drained it. They put in a drain tube and now we wait. They feel like due to the position of the cyst the likelyhood that it was compressing nerves is pretty good. It could take between 24-48 hours for his hand to start working again if that was the problem.

We will see all the doctors again in the morning and will hear what they think. If this works then the plan now is to sclerosis it on Monday but we know how best laid plans go :) and we will continue to be flexible.

Good night to you all.
Brooke & Michael
PS- pictures coming tonight.

The Plan

We have seen all the doctors today, including the close to 10 med students this morning, and we now have a short term plan. They all showed up when i was hanging out holding a napping Greyson in his bed/crib. Pretty funny - ;) pictures to come I promise.

Sooooooo.......Dr. Jiang and the radiologist have identified what the think is the problem. They believe based on the MRI results that there is new growth to Greyson's Lymphatic Malformation since the last MRI in October. They think that the new growth is putting pressure on nerves and that that might be the reason his arm/hand is not working like it should (it is limp and weak from the elbow down).

The good news is that it is largely macro-cystic, meaning it has many large cysts, which could possibly be treated with sclerosing (what he had done twice before his January surgery). Both of those treatments were successful in shrinking buddy so this could be good.

The unfortunate news is that the new growth is inside his chest wall intermingling with nerves and touching stuff like part of his lung. Dr Jiang says that that means this new growth area can't be operated on. It has also grown fairly quickly.

The plan today is to go in and put a drain in the new large cysts and drain them to see if his arm/hand control comes back. This could take between 24-48 hours since nerves don't just bounce back. If it works the will go back in the drains and do sclerosis to make it more "permanent". If it doesn't have any affect then there will be a plan B.

In the mean time dr. Jiang is trying to get a second opinion from the Vascular Anomalies group in Boston and we are trying to get a second opinion from a group in New York.

Thanks for all your support. We appreciate it all. I will send out another update after this afternoon's procedure. Take care.

Brooke & Michael

Calling it a Night

Greyson came out of the MRI around 10 pm with no problems. He was wide awake and happy of course.

We got back to the room and got him some cheese, apple sauce, crackers, and pudding. The nurses all thought I was crazy when I got into bed with him to help him relax but I think he likes it. One nurse even laughed as she said she had never seen a mom do that before.

After much coaxing he is finally resting (although I don't think he is actually asleep yet) and Michael is snoring. Dr Jiang and the other doctors are supposed to have some results for us in the morning. I better see about getting some sleep. More updates and hopefully some pictures in the morning.

Brooke

Why Wednesday - Doctor's Advise

Why does my doctor assume I won't listen to him?

Yes, it is true....I am still injured and have decided that some time off is in my cards. I haven't run for almost a week and plan to take a second week off. I went to my doctor (a non-runner) about it and he called for an X-Ray thinking it might be a stress fracture. Most know that stress fractures can't be diagnosed with an X-Ray but I figured it is cheaper than an MRI so we might as well give it a try. Besides we can only afford one at a time and Greyson gets to claim this one :)

Of course nothing showed on the X-Ray and so after discussing options with the doctor, WE decided that I will take 2 weeks off running. I will ice it and use the ultrasound machine on it. After the two weeks I will test it out and if it still hurts I will take 2 more weeks off.

This week has turned out to be a little crazy so I hope to get to the pool next week. I need to make sure I am getting some exercise and maybe lifting some weights as well. Because of where it is in my shin, I am unsure of biking so need to do a bit more research.

Hoping for a quick recovery!

Run On!
Brooke

Waiting

So we finally made it to the room around 4:15. Everyone in the ER were so helpful but we basically were simply waiting on a room to open. Greyson finally napped a bit and even slept through the ride up to the room in the wagon (picture to follow).... It was tooooooo cute. Of course all the nurses love him and he gives the tons of smiles.

He is all settled with an IV, toys, and a Big Bird movie. Now we wait again for his MRI. They tell us it will be tonight (late) but who really knows. We are keeping our fingers crossed that this will give us some answers.

More later,
Brooke

Getting Admitted

The doctor called us this morning to let us know that there were no openings for outpatient MRI this week and he wants it done this week. Sooooo we are at Children's Mercy Emergency Room waiting to get admitted so they can do the test this evening.

Looks like another night in the hospital for the three of us. Greyson seems happy for all the new thing to look at and play with. Besides not being able to use his right arm he is as happy as ever. He is running around the gurney now holding Michael's finger and yelling.

We will stay in touch.
Brooke

The Unexpected

Not sure what else to call this....it seems that Greyson is having some sort of "flare up". His growth area seems to be swelling a bit and for some unknown reason he is not able to use his right hand. He seems to be a bit tender in his armpit area. He has some blood vessels in his shoulder area and on his back and under the incision area showing through his skin as well.

We took him to KC to see Dr. Jiang at 1pm today (after texting him at bedtime Monday night). He ordered an ultrasound today to rule out artery/vein issues and we are in the process of scheduling an MRI for later this week.

Hopefully we will figure this problem out soon. We will keep you all posted. On a happy note...he is walking. :)
Brooke and Michael