Tuesday, January 31, 2012

Around noon today Jacob’s nurse brought him a drug called toradol. It is an anti inflammatory drug. This was the turning point of Jacob’s day. After the infusion of toradol, a percocet (his dose was lowered) and a yummy lunch Jacob felt much better. He was still uncomfortable with tummy pain, foot pain and over all soreness from surgery, but he was some where between the doped up zombie, feeling no pain and the miserable moaner from the hours before. They had found a balance and Jacob was able to cope better with what he needed to do.  TD spent a lot of time with him today being a positive motivator!  Jacob knows I can be a push over.

As of tonight Jacob and I have had many strolls around his room and he has gotten up many times to take a few steps.  He made one trip all the way down the hall with TD. It’s a long hall. Soon he will be able to take the circulation cuffs and pump off his legs and the hot circulation socks.

Jacob has eaten lots of food and is drinking fluids well.

Since Jacob was breathing very shallow last night and his temperature has been a bit elevated since surgery he was given an Incentive Spirometer. Getting him to use it last night was a challenge, but this afternoon and today he is working very hard getting to the level his respiratory therapist has requested. An Incentive Spirometer is ”a small, handheld device that is used after surgery to help you expand your lungs and cough up any secretions from your lungs. It also helps maintain your normal breathing pattern and measures your inspiratory volume, or how well your lungs are being filled with air when you breathe in. In addition, the incentive spirometer will help you exercise your lungs, just as if you were going through your normal daily routine.”

Jacob also had blood work done to check his red blood cells to make sure he doesn’t have any internal bleeding. The appearance of his belly suggests that everything is healing right, but his pain was worrisome. His levels came back normal as they expected.

They are also watching Jacob’s blood pressure because some of the unnamed nerves where Franklin was removed may control blood pressure for that area. Does that make sense?

From what we can tell so far, Jacob doesn’t seem to have lost any sensation from the surgery.

His foot is killing him, but he can move his ankle and his toes and the tendon for his big right toe was not involved or harmed when the tumor was removed.

We had nice visits from a social worker, a Chaplin and a volunteer from the Children’s Inn.

Jacob and I watched Max Payne this afternoon and were able to chat some.

Gavin was really good today at the hospital for me.  We all ate lunch and dinner together and Gavin and I spent a long time in the playroom.  We made Jacob a BIG get well soon card.  Jacob also got mail today at the Inn, mailed from Brie and TD before TD left Tallahassee.  Jacob loved his cards.  Brie also sent Gavin a card with Cars stickers and tattoos.  G enjoyed picking a tattoo for Jacob.  J is now wearing a "Piston Cup" trophy tattoo on his neck.  May look kind of strange if you don't know Jacob has an almost three year old little brother who loves Disney Cars.

Dr. A came in again this evening and checked on Jacob.  We will see him again tomorrow.  Dr. A is hoping to be able to sit with TD and go over Jacob's scan and talk with him about Jacob's C-7 spinal tumor.  This is per my request, so I am not the only one bearing the weight of this information.  I need to know that what I think I am hearing, I am also understanding correctly.  I recorded Jacob's appointment with Dr. A this past Thursday, but having him talk to TD will be even better if received first hand. 

TD is with Jacob tonight. Gavin and I are at the Inn and I am about to get some sleep.

Thank you for your continued prayers and support. Jacob is a special boy to have so many people praying for him and cheering him on!
Jacob's recovery is starting off very slow. He was too sleepy and uncomfortable to move until around 9 pm last night. The nurse and I got him to stand and about and hour later TD got him to walk a few steps. He hasn't gotten up since and refuses to. They took him off the morphine last night and switched him to Percocets every four hours hoping to wake him up a bit. Due to his pain he has remained on the Percocet but was put back on a lower dose of morphine. The pain meds work for about two hours and then he is back at an 8 out of 10 pain level according to Jacob.
Last night was rough. This morning isn't starting off well, but hoping for a good afternoon.
All of Jacob's doctors have been in to check on him this morning. They have all told him he needs to get up and move around today. Praying for strength for J...

Monday, January 30, 2012

My lap top is dead, so here are my random notes from today...

Surgery day

Hung bag of fluids at midnight on the dot.

Did blood work and vitals at 6 am getting ready for surgery. Brought warm blankets in to bring Jacob's temp up.

Cleaned his face and eyes. He Checked his Facebook, caring bridge and texts one last time before pre op.

Took him to pre-op at 8:20

Jac was very calm in pre op. Was so happy he got to talk to Brie.

Dr Kebebew came and saw Jac in pre op. one of the neuro drs came by as well. I can't spell his name.

Took him to OR at 8:40. He was almost asleep from the "relaxing" meds the anesthesiologist gave him.

The surgical nurse, Richard Called at 9:22 and said surgery has started, is underway, laparscopic, made 15 mm incision and moving organs out if the way to see what needs to be done. Will call me every hour. Dr A and Dr K are both there. Dr A did positioning b/f surgery. 

10:30 Richard called and said they are still in laparoscopic. May be able to not open!!

Dr K came and talked to TD and me after surgery. Was able to remove tumor laparoscopically! As far as they know there were no important nerves involved in the removal. The nerves in that area are no named nerves. None of Jacob's organs were affected.
Dr A being in the surgery was the difference.

Dr A came out after the foot tumor was removed. Said they both appear to be schwannomas. Jacob's foot is going to be very sore.

Both drs said Jacob did great.

Jacob was brought down to his room at 2:30. He is highly medicated. He was very sick from anesthesia. They took him off fluids and took the huge IVs out that anesthesia put in.

He is very sleepy and for the most part been sleeping. I have been able to give him water and adjusted his foot. It has to be kept elevated. He's complained of pain and they are giving him morphine every hour.

Dr Kebebew came and checked on Jacob. Jac told him his back and foot hurt. Jacob told me his whole body hurts. Dr K said he back will be sore from the way he was laying.

Jacob is supposed to get up to us the restroom when he's ready. They are bringing in a walker and a machine to circulate the blood in his legs.

I will tell Jacob of the out pour of prayers and love he has received today when he is able to understand me. All I'm getting right now are moans and requests for water Surgery day

Sunday, January 29, 2012

Jacob and I arrived at NIH Building 10 Clinical Center this afternoon at 3:00. After paperwork in Admissions we were taken to Jacob's room in the Inpatient NW Day Hospital.  Jacob was put in a semi private room without a roommate.  Our nurses have been very nice, but it was upsetting that even though Jacob was on the surgery schedule there weren't any orders in for him and they weren't sure who the "primary" team is for J's surgery tomorrow. I won't go into details about that because it was a three hour ordeal. Getting J's port accessed was unpleasant for Jacob but I can save that for another time also.  The theme for this afternoon could have been, according to the nurses, " this has never happened.". Typical for us it seems. 
Dr. Asthagiri came and saw Jacob. He wasn't the doctor on call for neuro, but he still came to see how Jacob was doing.  We saw a doctor from endocrinology and another doctor from neuro surgery.  They both wrote on Jacob's surgery spots with a permanent ink pen. He's sporting their initials on his right foot and right side. 
Jacob can order any food from 6:30 am to 6:30 pm and tonight he took advantage of the room service. He ordered a pepperoni panini, chicken fingers, Mac and Cheese, yogurt, apples, oranges, grapes, chocolate ice cream, a Pepsi, and a Gatorade.  He said it was all yummy. He also ate brownies and cookies from the Children's Inn dinner. 
Gavin and TD came over and spent some time here with Jacob. There is a nice family room and play room.

Jacob had a chest x ray to make sure his lungs are clear for surgery. They are. 
Jacob also had an EKG to make sure his heart is healthy for surgery. It is. 

They will be coming in at midnight to start Jacob's fluids.

Jacob is watching his 5th episode of Gator Boys and seems calm and cool. He looks adorable in his snowflake hospital gown and FSU pajama pants. 

I have loved listening to Jacob's phone blowing up with text messages and Facebook notifications of encouragement. 

Thank you all for your prayers, for your time and support. 

Jacob is the first case at 8:00 am and will go to pre op around 6:45 am. I will update everyone as soon as I know how Jacob is doing. 

Friday, January 27, 2012

I laid awake most of the night worrying about so many things. I don't

how I'm going to take the boys into the city today, but I am. Life goes


I wanted to take a moment to reflect on the good things that happened


We got to spend another 15 minutes with Ali and Laura after Ali's

infusion and before they went home. They made it home safely. As did

Savannah and her mom.

We met another patient of Dr. Asthagiri's, Vaughn, all the way from

Oregon. Vaughn and I have talked before on Facebook. I thought we had

missed him. I'm glad we didn't. He was laid back, positive and so

happy to meet Jacob. We talked with him and his friend and hope to have

more time with them next time. Vaughn, please send me a copy of the

picture you took with Jacob. Vaughn is so tall, he makes Jacob look

short :) Jacob thought he was "really cool."

I had a moment with our research nurse that was nice. TD called while I

was signing papers. As his picture came up she asked to see it. We went

to talking about how much Gavin looks like him and I showed her pictures

of Brie. It's the little things.

Although Dr. Asthagiri brought us bad news, he also is giving us hope. I

adore this doctor. To watch him with Jacob and to see how comfortable

Jacob is with him means so much. They cracked jokes and laughed

yesterday. Jacob paid attention and asked questions. I can tell that Dr

A really cares about Jacob. Jacob hugged him when we left. Not to

mention, like Dr Smith (Jacob's other doctor I adore), Dr A kindly puts

up with me. Not an easy task.

Did I mention how great Gavin was for the four hours we were in clinic?

Not one difficult moment.

Dr. Kebebew's news was upsetting as well. I know, without a doubt, that

bringing Jacob to him for this surgery was the best choice we could've

made. Jacob is getting the very best doctor in his field. The best of

the best.

Jacob's pre op was stressful, but I can smile about Dr. K giving Gavin

daps and knowing about the secret explosion at the end. I can tell you I

feel safe giving my child over to this doctor to remove this nasty

tumor. Dr. K's surgical fellow is from Talkahassee, accent and all. She

is a typical beautiful Florida girl who I know without a doubt took

special interest in Jacob. Jacob made me laugh... he named his adrenal

gland tumor Franklin. He was cracking jokes that Franklin's cousin has

moved in. His name is Fred and their last names are also Grimes. Jacob

got excited about having a morphine button. Who wouldn't be! Jacob sat

and talked with this fellow from Talkahassee about hunting and high

school sport coaches and all the things he loves about home (I can't

wait to get home. I'm missing you this morning, TD. I need you to hold


Our walk to the CVS wasn't fun. The weather was yucky, Jacob's left leg

hurt, we kept having to cross the six lane road because the sidewalks

are under construction. But Jacob and I got to talk. He told me all

about Savannah, who I really didn't get to spend much time with and have

never met before. We walked by the Double Tree hotel that during our

first visit here we went to a fancy dinner there with the families at

the Inn. Jacob didn't like the food so he had chicken fingers and Gavin

ate baby food. He was only 7 months. It feels like yesterday. It was one

of our first times witnessing the kindness of the people here at NIH.

We met a family from Jacksonville, Florida. A country family who heard

Jacob talking about getting his first deer. Dressed in a camo shirt,

which, Jacob will tell you, you just don't see up here, the dad told us

about the deer, doe and buck, living behind the inn. Him and his son

have been feeding them apples. I hope Jacob gets to see them.

I enjoyed watching Jacob play pool yesterday evening. Gavin and I tried

to play video games but after 3 trips to the office, it didn't work out.

It's fun for him to just run the halls.

I sat last night and read emails and Facebook messages from my online

family and our family at home. We may be traveling through rough waters,

and what Jacob has ahead us terrifying to me, but I know I'm not alone.

That is something to feel good about.

As I'm typing this I can hear the thunder crashing outside. The boys are

snoring away and I ignored a call from NIH that anesthesia wants to see

Jacob today at 2:00 pm.

Guess our plans will be once again changing.

Thursday, January 26, 2012

The bad news for the week...

Today did not bring the good news we wanted.

I will be short because I am tired and we just returned from a 3 mile walk in the dark, and in the rain, to a CVS to get an antibiotic for Gavin so he will be able to be at the hospital with Jacob.

Dr. Asthagiri said that Jacob's brain tumors have for the most part stayed the same. Both VS's have grown a few millimeters, but they weren't the main cause for concern right now. We did talk about cyber knife and the type of radiation they do for the VS's at NIH. I will have to listen to the recording to get the name. He said that it is time for us to decide if we want to do radiation on the right VS because too much past 3 cm and radiation is no longer an option...

One of Jacob's ependomomyas inside the spine has grown, but the spinal fluid is still flowing around it well.

Dr. A said it is time to do surgery to remove the C7 schwannoma. He said, because it has continued to grow and hasn't taken a break like NF2 tumors do sometimes, that it isn't "if" but rahter "when" it will become a problem. It could cause complete paralysis. He doesn't think that waiting and watching is a good choice anymore. He said recovery is better when a patient goes into surgery healthy, but he knows having no symptoms makes the decision to have surgery harder. Not to mention a surgery that could do harm. We have to pick the lesser of the two evils. He said he thinks when Jacob heals from the adrenal surgery Monday, he should prepare to have the spinal surgery. Jacob will come back in three months for a MRI and we'll go from there... unless he has problems and needs to be seen earlier. This will probably keep Jacob from being able to try RAD001 or Rapamycin. Dr. Asthagiri is going to talk to Dr. Smith.

Next, we went to Jacob's pre-surgical appointment and review of Jacob's CT scan. Jacob's adrenal bed mass has doubled in size in the last five months and now has "tentacles" and is wrapping around the vena cava nerve. It is now around 12 cm large (it was around 6 cm last appointment). This really complicates the surgery. Dr. Kebebew doesn't think the surgery will be laparscopic now since the tumor has gotten so big and has stretched out into other areas. Dr. Asthagiri will be there for when they are in the spinal area (for guidance if needed). He will also make sure Jacob's positioning is safe considering his spinal tumors. Being asleep and not being able to move, or say that something is hurting you for many hours can be dangerous with spinal tumors. He said the surgery could be anywhere from four to eight hours. The recovery will be longer with an open surgery as well. I guess the pain management is harder and it takes longer for the intestines to wake back up. They have to move the liver and small intestines to get to the area where the tumor is. They still do not think the adrenal gland is attached. They have no idea why this tumor has grown so fast over the last five months. Jacob asked for photos of the tumor and they said they will update me during surgery to let me know how Jacob is doing.

He will be admitted Sunday at 3:00 pm and surgery, last I was told, is at 10:00 am on Monday. I signed a gazillion consents today. They will be testing and doing research on the tumor. I also had to sign permission for a blood transfusion and one will be prepared for Jacob on Sunday if he needs it Monday.

Jacob is still having the tumor on the top of his foot removed as well.

This is so much more than we expected.

Please continue to pray. Dear God, please hear our prayers!
Is it Wednesday? Um, yes. 

Considering we spent eight hours straight at the clinical center today, we had a great day.  Getting up this morning was hard. Laura and Ali made it safely into Bethesda last night, but not until after midnight.  Staying up for them was well worth the wait!  I’ve been waiting for this for four years now, what’s a few more hours? We stayed up chatting until 2:00 am.  I could’ve spent the entire night with them, talking, laughing and sharing stories.

 We started our day in OP5 for Jacob's vestibular (balance) testing.  We weren't sure if he was still going to have it done, but Chris came out at 9:00 and said they were going to do the "whole shebang," the full three hours.  He did say they wouldn't use it for the study, but rather for clinical purposes and for our information.  I’m ok with that.  Gavin and I came prepared to stay in clinic.  Laura and Ali joined us after Ali's first appointment (bearing gifts of coffee!! Thank you!) and as Laura and I chatted, Ali played sweetly with Gavin.  They did a 100 piece puzzle, looked at magazines and colored.  Gavin was so comfortable wtih Ali.  She had his complete attention and he was a happy boy.  Ali must just be naturally good with little ones.  Ali reminded me of my beautiful Brie today, playing with Gavin.  Jacob, Gavin and I miss Brie so much.  The three hours went by fairly fast it seemed.  We were joined by Angie and Jasmine later, the mom and daughter I mentioned from MRI on Monday. I felt right at home with these moms, like we had been friends for a lifetime.  Jacob came out with Chris at 12:30 and Chris said his balance wasn't that different.  Maybe a little, tiny bit worse than last year, but nothing dramatic.  I was happy to hear that, but a bit puzzled as to why Jacob feels like his balance is changing, or why he complains of losing his balance often.  Good news, though.  We’ll take it!!  Jacob's next appointment was supposed to be after lunch (1:00) but Dr. Kim, the ENT, was in and could see Jacob immediately, so we stayed.  I really paid attention to Dr. Kim today.  There has been some discussion on the NF2 crew about his "bedside manner."  In the past, I’ve never been impressed either way.  Today, I thought he was very professional and spent a good amount of time talking with Jacob and asking him questions.  He waited for me to get Gavin situated with his movie and head phones and didn't mind me recording our meeting.  He was very attentive and respectful to Jacob.  Some of his information may have been odd to me, but he is the doctor and it's his job to give me his opinion.  Jacob and I get to decide what to do with it. 

 First off, he said Jacob's brain tumors look unchanged from August.  It's preliminary, but I'm thinking we will get great news from Dr. A tomorrow about the brain scan (fingers crossed)!  Nothing is written in stone, in my opinion, until Dr. A says it's so.  He asked Jacob the normal questions and Jacob told him about his random ear and leg pain.  Dr. Kim checked Jacob's jaw several times and looked at his overbite.  He asked if Jacob grinds his teeth.  We aren't sure, but I’m guessing no, but he did say it’s possible that the ear pain is from a jaw issue.  I have TMJ and I don't see the similarities, but we will definitely consider the possibility and talk to his dentist about it.  Jacob's orthodontist is trying really hard to fix his overbite, but since Jacob can't have a permanent metal retainer put in, they’re using rubber bands to pull the jaw forward.  The rubber bands won't work unless Jacob wears them…  Dr. Kim also said the knee, calf and outer quad pain could be due to an issue with Jacob's left knee joints.  Not sure how an Ear, Nose and Throat doctor would be an authority on this, but I'm sure he sees all things caring for patients with balance issues.  We will look into that as well.  He did look at Jacob's ears and said what we already knew, no infections.  He gave J the all clear on mouth and nose as well.  Jacob is showing left side forehead facial muscle weakness but it could be due to his craniotomy in 2009. 

Pizza again for the boys for lunch and I had some ok sushi.  It was a relaxing lunch since we had over an hour to sit, eat and just be.  Laura and Ali joined us.  Our nice lunch was almost enough to carry over good feelings to the eye clinic.  Walking in to OP10 and seeing 16 people sitting in the tiny waiting room is a bit deflating.  It's a small waiting room.  Gavin and i posted up in the corner.  The iPod had died so we were back to the coloring books, slinky and slime jar.  Jacob had the visual field test first.  Then we were taken to a hallway and sat in a row of four chairs.  We sat there for an hour.  Gavin was restless and kind of bouncing around the hallway.  We tossed the tiny hackie sack for a while and most people who passed us smiled.  The elderly woman sitting in the last chair asked us about the little crocheted ball we were playing with.  Gavin got a little too much air on one of his "tosses" to me, out of my reach and at the wrong time, and almost hit a clinic worker that was walking by.  It startled her and she was not happy.  She obviously didn't share my sense of humor.  She told us if Gavin couldn't sit in the chairs we would have to go out to the atrium outside the doors of the clinic.  My response would’ve been different if she had been kinder to me, but she wasn't.  She said Gavin playing in the hall was dangerous since there are visually impaired patients in the clinic.  Really?  Hadn't I brought my visually impaired child to the EYE clinic for care or were we just there waiting forever to ruin her day?  I told her that if their clinic was going to see pediatrics and make them wait for hours then they should provide an area for them to play.  Get a wooden bead toy or a little tv or anything child friendly.  I reassured her the little hackie sack would not have hurt her had it hit her in the face!  Darn...  Needless to stay Gavin and I spent the rest of our time on floor 10 in the big area, outside the elevators, away from the eye clinic's visually impaired patients.  Hindsight, she was probably right, but it's all in how you you present things.  She could really use some people skills and some tolerance training.  Maybe she was having a bad day.  Maybe she should’ve realized that WE could be having a bad day (we weren’t, but we could have been!). 

The neuro ophthalmologist Jacob has seen the last two years left and I am happy to say I like her replacement, Edmond J. FitzGibbon, MD.  He came out into the hallway and went over Jacob's visual field results, his eye exam and the Optical Coherence Tomography (OCT). He brought me copies of the test results and I am so ecstatic to report the OCT and Jacob's vision are the same as last year!  His visual field black spots have progressed some since 2009 but he still believes overall Jacob's eye and optic nerve are stable.  He asked me if anyone had discussed any type of radiation for the optic nerve meningioma…   He said it wasn't time to do that yet, but wanted me to think about it if the time does come.  More good news for the day and we were all done with clinics!!

Our evening at the CI was really nice.  Before dinner, Ali and Gavin played air hockey.  I could really see TD's competitive spirit come out in Gavin with every pout at each goal Ali made. I can't believe G is tall enough now for the air hockey table, but he sure his. Jacob and Savannah played pool, or at least tried to, and I just watched, smiling.  At dinner we had a table full of wonderful NIH families, all living with NF or NF2.  The sound of happy teenagers talking and laughing was music to my ears.  It was lighthearted and refreshing to talk about scary movies and which type of cookies are our favorite.  Gavin and I spent an hour in the big playroom.  He made a new friend, Keevan, with whom he has had many short encounters throughout the week. Tonight in the dining room, as Keevan and Gavin were discussing their names and ages, they just spontaneously hugged.  I melted.  This little boy, who will be three in May, is as cute as Gavin and has the sweetest voice.  I loved watching them play, and his mommy, who is ex-Air Force, was nice to talk to as well.  She has an adopted daughter and an older son.  Her husband is active military.  I tried to look up Keevan's diagnosis but I stored it in my head wrong (nice way of saying, “I messed that one up!”).  Will try again tomorrow.  Jacob had another great night hanging out with the girls.  They were disappointed that the hockey equipment was locked away behind the renovations they started today in the lobby.  Gavin went to bed early again due to no napping and I was able to have a long adult conversation with three other mommies face to face!!  I don't remember the last time I was able to do that.  Laura, I wish we had more time together! 

 I've never experienced meeting someone online that I have developed a close relationship with.  I have never been able to meet a family that I have prayed for and spent countless hours thinking about.  It was so simple, yet so amazing, to just watch Jacob and Ali talking at lunch and playing Temple Run on the iPod, listening to them laughing.  These kids have been through so many challenges in their young lives.  You would never know they are living with NF2 , that their dreams have been forced to change and they have daily and weekly struggles that most of us can't even imagine.  I am so proud to be Jacob's mom and feel so blessed to know Ali and Laura and to meet these other moms and their brave children pushing strongly through our broken world.

 Ok, done unwinding.  Night!

Tuesday, January 24, 2012

Waiting in CT...gotta love the Georgia boots

Does it make me a bad mom, that I left my 
baby in his PJs and didn't dress him until after
Jacob's first appt?

It's now 4:00 pm on Tuesday afternoon and Jacob is all done at ol' Building 10 (that's the Clinical Center) for the day!

Today went by pretty fast. Jacob's first appointment was a CT scan of his adrenal glands and surrounding area. I took Jacob to pediatric oncology at 7:45 am and told Mrs. Kim, our favorite RN, that he needed an IV for his 8:00 CT. We could've just went to CT and they would have placed his IV, but Jacob is very comfortable in peds and the nurses there are extremely nice... and good with needles. Jacob's lidocane had been on the inside of his left elbow for at least an hour, but the press-n-seal wasn't staying in place, and, once again, he was worried. I don't blame him. IVs hurt and the anticipation of being "stuck" for whatever reason is the worst part. Well, sometimes. Jacob has been through a lot of pain in the past with IVs. I really love him having the port, but CT contrast is administered too fast for his particular port. Mrs. Kim got his IV in lightning fast and pain-free. We were at CT by 8:00 am. They checked Jacob in and gave him blue paper pants and a shirt to wear. An hour later, I was a bit annoyed that so many people had come and gone and Jacob, who wasn't allowed to eat before his scan, was still waiting to be scanned. I asked one of the techs why Jacob hadn't been called back. She said they had to take inpatients first... The next split-second was one of those reflective moments where you recall everything you've just seen in order to respond to something (particularly something you may not have agreed with)... I know for a fact that at least six people came in street clothes, changed into blue paper attire and went for their pictures. The one inpatient I did see was on a stretcher in front of us, puking and moaning the whole time. They could of taken him on back and I wouldn't have mind waiting at all. I decided not to say anything at this point. Twenty minutes after I spoke with the tech, Jacob must have magically been next because they called him back. When he was getting imaged, I went to security and got our new badges (good for the next year!). Jacob's scan only took about twenty minutes. He said he remembered the cool radiology tech from his brain CT a year ago and that the contrast burned his arm. :(  He hates how it makes you feel (hot and flushed for you CT virgins) as it runs through your body too. Jacob said there is a machine now that pushes out the contrast instead of a tech coming in to do it. That's different. Jacob was happy to eat breakfast. His next appointment wasn't until 1:00 but we went up to OP5 to see if Jacob could have his hearing test done early. A definite no-go. They were slammed.

Our next few hours at the CI was nice. I got our dirty clothes from the last few days washed and in the dryer. Gavin and I played with the big light bright and played in the big playroom, which was very clean and organized today. We ate lunch and went back to clinic. During Jacob's audiogram and ABR testing, I talked with a mom whose daughter is 14 and who are here for the first time as part of the NF2 study. She was the same mom who helped Jacob put Gavin's stroller on the shuttle at DCA and tried to help me with the car seat. Very glad I got to redeem what must've been an uninspiring first impression. They are from Chicago and I enjoyed talking with her very much. They even brought grandma with them! Jacob's testing took two hours and Chris said nothing in Jacob's hearing has really changed. Great news! One less thing for me to worry about right now!  Whew!  Chris was in a hurry to be some where so he said he would talk with me more tomorrow. He also said he wasn't sure if they would do balance testing now that Jacob has had Avastin treatment. The Avastin takes the "natural" out of the "natural history study." I sure wish I knew before we get up early to be there for testing tomorrow...

Tonight should be a nice night even though we won't make it to the Caps game. My dear friend, Laura, and her beautiful daughter Ali, are flying in from Chicago. Laura and I have been corresponding for the last four years, but have never met. Jacob and Ali share the same birth month and year and have texted some, so it will be nice for them to finally meet. I could never express in words exactly how much Laura's friendship has meant to me over the years. I am beyond excited that I get to spend a few hours with her this evening! Sure hope G will be good for me. He's had a pretty good day.

Gavin was crushed when we came out of the clinic today and all the snow had melted. We found a tiny pile left on the sidewalk and he and Jacob played in it for a minute. Later Gavin dug through the M&M treasure chest at the front door and found some little junk to entertain him. It's amazing what a little wind-up alligator and a tub of slim can do for a toddler! Thank you, treasure chest! G is really tired and his snot has gotten thicker and more colored. Yuck. He refused to go to sleep last night until 12:30 am, then up at 7:00 and no nap. Fingers crossed for an early night.

Jacob is in the game room, playing pool with a new friend. I'm sure he will be on the XBox soon and he said he is very happy to just chill this evening. Me too...

My biggest complaint of the day is coming back to the CI and finding our clean laundry on top of the dryers. It would've only been left in the dryer for an hour after finishing and there are several other dryers in that laundry room, not to mention four other wings with laundry rooms fully equipped with washers and dryers!  I have never taken anyone's laundry out of a machine. I just come back later or go to another wing. I don't know why other people don't think like this... I was extremely bothered that someone touched my clothes. I don't even let my loving husband touch my laundry! Oh well. In the big picture, it's really not that big of a deal :)

Gavin's favorite for dinner tonight - spaghetti.

Tomorrow - Three hour Vestibular (balance) testing, which I really hope they do since Jacob is having issues with his balance. Then an appt with the ENT, Dr. Kim and the eye clinic in the afternoon.

I just want to say a BIG Thank you again to all of you following Jacob's journey. Your prayers and support mean so much to us. Every email, FB note and text I've received brightens my day and reminds me that our family is so blessed. (Wiping tears)

It's 10:00 pm and I am just now getting to post what I started earlier.  Prayers for Laura and Ali who have had a five hour delay in Chicago and are just now flying to DC. Did you know only smaller planes are allowed to land at DCA after 10:00 pm due to a noise restrictions?  Only in DC. Guess the rest of us in the US are just peanuts.

I am a happy mama.  My boys had a great night.  Jacob met some older dudes and played street hockey.  Jacob's first rodeo and he loved it.  We spent some time petting Violet, the CI's big lovable lab.  (I miss you so much Grissom!) Gavin spent thirty minutes in the craft room with some other children and volunteers while I cooked dinner.  He made me a picture and was very well behaved I was told.  Jacob got a seated chair massage in the reflection room.  Really sorry I missed that!  The boys threw blocks and wrestled in the soft cube playroom. (That's what G calls it.) We ate kettle corn and played bingo.  Gavin won a truck :) He is sleeping peacefully now and his nose breathing sounds pretty good after a hot shower and a lot of nose blowing.  Oh how I hope he will sleep until 7:00 am tomorrow.  Jacob is out socializing and I am trying to stomach the State of Union address.  I will be staying awake late to at least give Laura and Ali a big hug!!

Till tomorrow......

This is one of those gifts from my MIL that I
at first think is so silly and then realize
it's awesome!! I just had to take a pic

Gavin's face when he saw the snow
all melted. (I had my phone in my hand
to capture the moment) So sad!


I really have a hard time putting photos on blogger - sorry they are all over the place.

Monday, January 23, 2012

Day 1, Travel Day, Tallahassee, Florida - Washington, DC...

Finish line at The Children's Inn, Bethesda, MD (in preparation for Day 2!)

Our travel day was filled with many disappointments, but we made it to our destination at 5:00 pm on Sunday. It's now Monday, Jacob has finished his morning labs and the 3 hour brain and spine MRI both with and without contrast. The MRI went well. That's the short version for those of you who just want to know that we made it safe and all is well. You can hang up now. For anyone else who wants to read my whining about a not-so-fun travel day, by all means, please continue reading...

I've been stressing to the family for the last few weeks to stay healthy, get rest, wash hands, take vitamins and stay away from sick people. The Children's Inn doesn't want sick kids here given that there are so many little ones in treatment. Not to mention Jacob needs to be healthy for his surgery as well. I thought I was in the clear until Gavin started sneezing Friday, with a few more cold symptoms appearing on Saturday. Sure enough, Saturday night (well, actually it was Sunday morning at 4:00 am) Gavin woke up complaining about his nose. He felt a little warm but I couldn't tell if it was fever or just him being cozy in bed with us. After a good nose cleaning out (Thank you, TD, for teaching our not-even-three-year-old how to blow his nose!!), Gavin curled up with TD and both of them went back to sleep. I wasn't as lucky. My mind was racing. I called CHP's Urgent Care to see what time they opened and knew I was out of luck when they said 9:00 am. We had to be at the airport around 9:30 am. TD and I whispered about Gavin staying in Tally and I wondered if I should call and beg our nurse to prescribe a Z pack just in case G got worse. As my excessive worrying continued, I noticed Gavin was sleeping peacefully, breathing well and didn't feel hot at all. "Ok," I thought, "I can deal with a runny nose with CLEAR drainage." Needless to say I never went back to sleep.

TD, Jacob, Brie, Gavin and I made it to the airport around 9:30. This would be the last thing that went according to schedule for a few hours. I checked in our big bag. There was a lot of thought that went into whether or not to ship a bag through. I decided it would be best for the way home since Jacob wouldn't be able to help me carry anything. We visited for a little while and got into the security line around 10:00. TD and Brie waited to see if there was a problem with any of our stuff going through, but when I realized how long it was going to take, I waved them to go on home. We had around 10 tubs full of crap. Shoes, belts, phones, iPods, coats, laptop, snacks, Gavin's activity bag, my backpack and Jacob's backpack. Like pack mules! Oh, and the stroller has to go through the x ray machine as well. We had several things that they had to take out and check, like actually TEST! Gavin's milk and juice boxes, and so much more. I think six people looked at Gavin's ham sandwich to see if it was a sandwich. A bomb that looks like a sammy would be quite clever (and terrible, just saying). Anyway, all of our stuff checked out safe except Gavin's buddy fruit, a little Capri Sun-like package of mushed fruit, strawberry if you're curious. The scan showed that it had a material on it that could be used in an explosive. Really? Ok, so I thought they would throw it away. Instead they gave it back to me and gave me a full body pat down. I'm not talking about a pat, pat, all done. I got felt from head to toe. I had to lift up my shirt to my ribs exposing my waist and was patted down under my jeans at my ankles. I was so impressed that they use the back of their hands to feel your breasts, bottom and crotch area instead of using their palms. It completely alleviated the humiliation of being patted down for a fruit pouch. I should thank them personally... making a note now. Ok, enough sarcasm. She did offer to take me to another room. I guess she didn't see my plethora of stuff and my baby sitting in his stroller with a gazillion people walking constantly between us. Maybe she thought that if I was going to give my baby a fruit pouch full of bomb juice that I must not care that much anyways... AHHHHHH! Jacob stayed right there with Gavin and watched as his mom was treated like a criminal. I understand they need to do this to be safe. I want to feel safe on our flights. I know I shouldn't complain, but the logic is off. If I am willing to take explosives on the plane with my kids, then why only check me? If I am that horrible of a person why would I be the only one who could be a risk? There were several other old ladies getting lucky with the FSA agent too. So my shoes, belt and scarf were sent through the scanner again, we packed all our stuff back up and went and sat at our gate. The US Airways attendant announced shortly after we sat down that the flight was overbooked and they were looking for volunteers to give up their seats. Great. As if all of the preceeding wasn't enough, our flight showed up an hour late. I was wondering how we would catch our next flight when TD called and said our grocery order wouldn't be delivered Sunday because their delivery company's system had crashed. We were looking at having no time in Charlotte to eat because we had to get to our flight to DC and then no time in DC to catch our shuttle to the Children's Inn, and then no car at the CI and no restaurants on the NIH campus. The cafeteria isn't open on weekends and closes at two anyway. When I got on the plane to NC, I realized that my ice pack for Gavin's milk had burst and leaked all over our bag and me... Woohooo! Just another cheer-inspiring moment.

We landed in NC and the attendant at the end of the tunnel was announcing that if you are on the DC flight to hustle to C12, that they were holding our flight. I think Jacob is incapable of hustling. We were the last ones to get to the gate and I honestly think they had closed the door and had given up on us. I was about 30 yards in front of Jacob and when the person at the desk saw me breathing like I had just ran a 5K - she said Grimes! I said "YES!" and she got on the phone for them to open the doors. She was kind enough to wait on Mr. Turtle. The "walk" from concourse E to C is a freaking hike and poor Jacob complained about leg pain for the next hour. Gavin and Jacob were hungry, tired, and had to potty, but we boarded the plane, fake smiles in full grin, and made it to DC at 2:50. Everyone was miserable but glad to be on solid ground for a few weeks. Have I said yet how much I dislike flying? Gavin didn't remember flying before yesterday and he was really scared when we took off in Tallahassee. He had his very own window seat but was hugged up to my arm, head down, eyes closed. After we were off the ground he looked out the window and was amazed. He didn't mind landing in NC and loved seeing all the cars and such. He did cry for a long period of time when we came into DC. His ears wouldn't pop and he cried over and over, "I can't hear myself!"

Anyway. Back to arriving in DC...

When I spoke to the CI receptionist requesting a car seat for G that morning, she told me that the shuttle was leaving DCA at 3:00. I swore I read 3:30, but I have been known to remember things wrong (don't let my husband know!) so I believed her. At that point I thought we were going to miss our shuttle with the car seat for Gavin. It's a 45 minute drive to the CI from the airport on freeways. Did I mention yet our bag didn't make it to DC with us? Oh, forgot to mention that... Lovely. As I was setting up delivery for our bag, I called NIH transportation to check on times. I was relieved that we hadn't missed our ride and it came right at 3:30. The car seat was not installed and, once we got it strapped in right, the five point system wasn't working. Twenty minutes later (and still no tears yet, a feat that I'm very proud of!) Gavin still was not safely strapped in, but there wasn't anything else to do but be on our way. This was almost my breaking point. I was terrified the entire ride. There was ice and snow on the ground, the eight-lane freeway full of other cars goes over bridges and through rock mountians and on very curvy roads at what feels like 100 mph. I thought the stress was over when I saw the NIH security check point until I realized our badges were expired. Usually the guards will come on the bus and check IDs and have us sign papers. This time it was required for us to get off the bus and go through a metal detector and then go to the booth to provide identification and get a temp badge. There were about 10 others on the bus. I didn't want to take Gavin into the cold so I asked Jacob to stay with him and he could go when I got back on the bus. The bus driver said Gavin could stay with him and I replied, "That's ok, my son will stay." I guess my anwser wasn't good enough because as I was waiting in line, freezing, the bus driver sent Jacob off the bus to get cleared to enter. I understand he was trying to save time, but I was still angry.

Checking in at the CI was pleasent as always. Everyone here is so nice. I will say, again, I was disappointed that we were placed in a room in the wing that I specifically requested (when we made our reservations) NOT to be placed in. I know now that it was for the best and one of those things I should be thankful for. The CI is having renovations done in the main lobby and around the big playroom. If we had been placed where I wanted, we most likely would have had to listen to work being done during the days, during nap. Jacob took Gavin to the big playroom today and said there were cans of spray paint and other construstion things laying around. It is best if we don't pass it constantly and tempt Gavin. After unloading our stuff, our carry-ons anyways, we bundled up and went outside. It was supposed to rain today and I wanted the boys to get in the snow before it turned to muck. It was an awesome 20 minutes. I hope we will get another chance to play outside before we leave when the boys are feeling better. We threw snow and stomped and ran. It was freezing our hands and our noses turned red, so we went inside to warm up. Thank God some wonderful people came and brought dinner for the families last night. We ate a nice meal with salad, lasagna, fruit and Jacob's favorite, macaroni and cheese. I was told that our bag would come by nine. It didn't. We had a change of clothes for today and that was it. I gave Gavin a bath and laid down with him. It was hard, but I stayed up waiting for our luggage. We needed our stuff. I called again at 11:00 pm. She assured me it had been picked up and was out for delivery by their delivery company. Jacob had a good everning. He Skyped with his dad and family, talked to some of his friends and watched football in one of the common areas. I went to sleep happy the Giants had pulled off the W and hoped Monday was going to be a bit smoother.

At 4 am Gavin woke up crying again about his nose and aksing for water. He settled back in and I went to see if our bag had come. It had a nose syringe in it. And Vicks. Nope. No bag. I called again. They weren't open until 6 am. Gavin and I went back to sleep and it seemed like minutes later my alarm was going off. Jacob's first appt was at 8 am. We bundled up and were so excited to go to the coffee shop for bread, coffee and hot chocolate. Sad face. Closed due to the weather until 11:00. I was worried today was going to be another day going straight uphill. We went to peds oncology for Jacob's port access and blood draw. We waited a good 45 minutes and Jacob was stressing that his lidocaine I applied at 7 am had worn off. While waiting, Gavin gagged himself with a cereal bar and threw up on the floor. So I was in the company of Nervous Nelly and Pukie Paul. Haha, bad joke. Jacob's access went easy, blood draw quick, and we got to MRI early. They took Jacob back at 10:00 and I talked with a wonderful mom from Tennessee who had a 19 year old daughter with a very advanced case of NF1. I hope to see her again here at the Inn. While Jacob was in his imaging, Gavin and I got drinks and watched some tv. I got a call to rearrange Jacob's schedule for tomorrow and Thursday, which was another pain, but worked out. I called and fussed at US Airways again about my bag. Each time I called the attendant was very nice and apologetic. She called the delivery company and then called me back. I have been told it will come "in the next few hours" since 6:00 yesterday. US Airways, reconsider your contract. Your outsourced delivery service sucks! They said there was supposed to be an ice storm last night and there wasn't. Last time I called the delivery guy told the airline that due to demonstrations in DC he couldn't get out of the city. Um hm, Whatever.

So Jacob's MRI went well. We went back to peds and had his port flushed, heprin cycled and deaccessed. We ate pizza and fruit in the caferteria. Gavin wanted to play in the snow again and we did a bit on our walk back down the hill, but our groceries that Gina had ordered for us were finally here and I needed to put them away. Thank you Gramma Gina!!

It is now 3:00. Jacob's next appointment isn't until 5:00, a delayed, no contrast MRI of his brain. Our groceries have come and the all-so-common "what's for dinner" question has been anwsered. Gavin is sleeping peacefully, Jacob is playing XBox and I am waiting on our luggage, sitting quietly, reflecting on the last two days and being thankful that we are all safe and surviving the journey. One and a half days down....

As I was about to send this post to TD to proof, the delivery guy had the audacity to call me and ask me to walk to the gate to get my bag. Evidently, if he was going to come through the check point, they were going to have to check every one of his bags. Of course, desperate to get our bag, I ran and met him and I went through security again, but what a lazy *#@#. He better be glad his van wasn't marked with anything or I would be calling somebody!! I am so happy to have our luggage. I can't wait to wash my hair!! :)

Sunday, January 22, 2012

Photos January 21 & 22, 2012

Ice cream! with my Brie Saturday night
before going out of town.

Playing with wall track one more time...


Plane ride

G trying to sleep in DC Airport

Our view of the NIH Clinical Center from
our room at The Children's Inn

CI playground! Snow!!

Gavin loves the fish tank outside the dinning area
in the E wing

Thursday, January 19, 2012

In the spirit of championship football this weekend, Jacob and I are getting the “I heart Jesus” eyeblack out, putting our game faces on and getting pumped up to tackle the upcoming trip to DC! I know it’s early in the blog, but on a side note… Yes, I’m hoping for another Pats v. Giants Superbowl. I would be happy to see Eli bring home the win, but I wouldn't be disappointed with either one winning. Really, who are the 49’ers and Ravens? Oh, and my poor Colts… Peyton, I really missed you this year. Please don’t retire! Back to the story…

On a more serious note, I’m packing, checking paperwork and reservations and mentally preparing myself for what the next two weeks have in store for us.

Jacob, Gavin and I are flying out of Tallahassee on Sunday morning to take Jacob to the National Institute of Health for all of Jacob's bi-annual testing, imaging and doctor visits. Then, after a weekend of fun (hopefully, weather permitting!), Jacob will be admitted to the hospital wing for surgery on his right adrenal gland. Our tentative agenda for week one looks like this:

Week of January 22, 2012

• Sunday is our travel day.

• Monday Jacob will have labs, his 3 hour morning MRI with contrast for brain and spine and his delayed, no contrast MRI in the afternoon.

• Tuesday brings CT scans, with and without contrast, of his adrenal glands and surrounding area in preparation for surgery on January 30th. After the CT’s we will meet with Dr. Electron Kebebew in the Endocrine Clinic to discuss the CT results and surgery. Tuesday afternoon, Jacob will have his two-hour hearing screening, audiogram and ABR testing.

• Wednesday Jacob has his three-hour vestibular testing (balance testing). We’ll be in the eye clinic on Wednesday afternoon for an appointment and another appointment with Dr. Kim, the ENT.

• Thursday is the "big" morning when we get to meet with Dr. Asthagari and he goes over the entire MRI finding and changes... or non-changes. Wouldn't it be wonderful to have no changes?

After typing this I realized I don't have the time for Jacob’s ped’s oncology with Dr. Warren... adding that to the list of things to do. And now you know my secret, this is more for me than it is for you! (“CHECK”….since I typed this yesterday I have learned Jacob’s Pediatric Oncology appointment with Dr. Warren is at 8:00 am Monday after his labs and before his MRIs.)

If any of you have any free time next week, please continue praying for us. For safe travels, for strength, energy, and patience and, most of all, for us to find the calm in the storm. Please pray for Jacob and the many things he is dealing with and for him to keep pushing through. He won't complain. He won't say he is worried or scared, but I know he is and I know that in order to get through this, we need God's love and the support of our family and friends.

I will do my best to keep everyone updated and post often.

Monday, January 9, 2012

How was our weekend?


On Friday, Gavin and I packed a lunch, texted TD to meet us at Tom Brown
and headed to the park. Fifteen minutes into playtime, G was climbing
the big round metal stepping stones and fell backwards, hitting the back
of his little head. I'm sure you could hear the "bonk" across the entire
park and if the banging of G's head wasn't audible, then his screams
were. It was terrible. Gavin was very clear that he was done playing
and we went to find the perfect spot for our picnic. TD arrived just in
time to help us lay our blanket out and have a yummy lunch. It was a
beautiful day,
much needed after the many mornings in the low 20's earlier in the week.
Gavin ate his sandwich and blueberries and proceeded to wrestle with TD
and run around in his normal Taz fashion. We went back to the park and
played after lunch. G complained that his head hurt at the site where he
hit it, which, I thought, was normal considering. After the park, we
picked up Jacob from Leon and went home for naptime. G took a normal nap
and seemed ok when he woke up. While at dinner, he started to complain
that his head hurt, but he ate like he always does. We walked around the
craft store and Toys R Us and got home around 9 pm. G asked to watch
Cars 2 and he and I were in bed at 11, which is the every-night norm for

I noticed he looked extremely tired and asked him if he felt ok. He said
his forehead hurt and started to toss and turn. I got the flash light
out and looked at his pupils. They were responding well and were
symmetrical. I was still concerned so I stayed up and watched him for a
little over an hour. At 3 am, Gavin, who still sleeps with us, woke me
up asking where his Cars cars were and complaining of eye pain. I turned
on the light and he started to cry and then started to throw up. No
fever, no other signs of virus. I was terrified. I took Gavin to the tub
and TD sat with him while I called the paramedics. They came, took
Gavin's vitals and transported him to the hospital. After chasing my
yorkie, Grissom, down the road (who was also upset and thought it was a
great time to breakout) I gathered up all of our things and met TD and
Gavin in the ER. Gavin is lucky to have a dad who I know is just as
capable as mommy is of taking care of him, plus I've had more than
enough rides in the ambulance and we only live half a mile from the
hospital! Instead of being in triage, TD and G were in the waiting
room. The people around them were discussing (or really barking) how
long they had been waiting. Seven hours, four hours... What? Not with
my baby who could be reacting to a head injury! I have sat in the very
same ER, bleeding internally, back in 2006 for eleven hours. Wasn't
gonna go that way this morning, even if we had to take him to the other
hospital. After speaking with the nurse, she sat G down to take his
vitals and he started to throw up again (as horrifying as this was, this
was perfect timing since they got to see him in action).

They put us in triage and then, after an hour, took us to a room. Gavin
was miserable, but was happy to lay down in a bed. We darken the room as
much as possible and turned on some white noise (thanks, iPhone!).
Nothing was settling Gavin, but he did stay in the skinniest bed on the
planet. A very wonderful, very sweet X-ray tech named Michelle came and
took him for a CT. To my surprise, No IV and no contrast, thank
goodness. Gavin laid very still and was so super brave. TD and I were so
proud of him. Michelle gave him several really cool stickers, a Grem
included (if you don't know who Grem is, you must not have a little boy.
He's a Cars 2 character. The "bad orange racecar that's not a
racecar!"). We went back to room #10 and waited. I prayed for no brain
bleeds, no fractures and no brain swelling. I had thoughts of how to
contact the best neurosurgeon at Shands two hours from our house if
needed. Dreaded memories were surfacing of sitting in the waiting room
after Jacob's first ambulance ride and scans only to be told he had
multiple brain tumors. I was so scared. I know TD thought I had
overreacted as he said things like, "I know you can't help but think the
worst." Registration came in and asked for our $100 co pay and had me
sign many papers.

Next, the good news came. I almost burst into tears of joy when Gavin's
ER doctor came in and said she looked at his scans and everything looked
as it is meant to be. She did an exam and talked to Gavin. She said he
could be suffering from a mild concussion. Gavin hit his head in the
"nausea center" and said that the episodes of puking were most likely
related to that, that the brain had "reset" and realized that it hurt.
She ordered G zofran and Gatorade. He became extremely restless
(understandable given that it was somewhere around 6:00), begging to go
home. We found the Disney channel and passed the time. About an hour
later she came in again and said the radiology doctors read Gavin's CT
and he looks good. No swelling, cracking or bleeds. We could go home.
Poor TD had Jacob's Boy Scout Christmas Tree Lot takedown and had to
change out of yucked up clothes from the ER and leave again. He's a
good daddy! I changed our bed sheets, G and I took a shower and I hope
to sleep peacefully the rest of the day.

P.S. Crazy baby slept from 8:15 to 11:30 and is up and ready to play.
Seems to be feeling just fine. TD and I are exhausted but so happy our
baby is ok and ready to take on the world again.

Whew :)

P.P.S  As of today, Monday, Gavin is still complaining that his head hurts, but we have had a great day and he is displaying normal behavior.  We made peanut butter bird seed bird feeder and did some maintenance to our winter garden. 
There is no question in my mind as to weather Gavin was sick from his fall - he hasn't show any other signs of virus or illness.  I am so thankful it wasn't as bad as it could of been.  It's nice to have answered prayers!

(Insert photo here - Haha, yea that would be nice to share some really good photos Of TD and Gavin from our pic nic at the park Friday, but I accidentally threw away our Cannon camera Friday night and the trash took our trash Saturday morning due to the holiday this past Monday. Nice hun.)