It doesn't even seem possible, but it's true–Isaiah is now in
HeadStart. He's four years old already? Sure seems that way!

This year at HeadStart, he will be learning and having tons of fun. He
already knows a lot for his age, but the socializing and having a
follow-the-rules type setting will be very good for him. He's a
well-behaved child, but he also likes to do what he wants. His teacher
came for a home visit and went over everything with us. He'll be
learning to write his letters and learning the letter sounds. They will
work on colors, but he already knows those. They have painting,
stories, kitchen play set, doctor's clothing and toys, blocks, and more
than I can remember. It sounded like a fun place to be all day!

My Mom, Edward, Isaiah and I went to Open House. Tiny tables, tiny
chairs, lots of toys, tiny couch….This is a place for little people to
learn and have fun! Isaiah met the teacher's aide there and was talking
to her about painting. He had him a snack and met a few other kids. He
is just so happy and excited about school. He loves making new friends.

The teacher is awesome. She is completely willing to communicate with
ME however I need it–e-mail, Facebook, etc. She also bought a book of
the simple sign language alphabet and plans to work with her students on
it. I told her Isaiah could help! Actually, the whole staff up there
is excited about our family being in teh program. We bring something
new to them. The kids would benefit from observing us. Take Edward
and his Seeing Eye Dog. Just by Edward going to the school and possibly
talking to them about how the dog works as his eyes and how it's not
good at all for the public to distract the dog….that's educating them
on disabilities at such a young age and they will remember it and pass
on the information. I could volunteer to help teach sign language.
Kids love to learn something different. By observing the way a blind
person, deaf-blind person, and even us having a child that can
communicate in all ways will help show other kids that disabled people
aren't stupid, not scary, etc. It really does hurt our feelings when a
kid will not even come up and say hi to us because they are afraid of
us….just because we're different. I know that Isaiah is never going
to be that way, with anyone. He is always going to be wanting to help
anyone he can. He's used to "different." It doesn't bother him in the
slightest.

I truly think me being deaf-blind and Edward being blind has opened
Isaiah's mind. He's had to learn to be creative to talk with me. He
gets his great vocabulary from Edward and me both. I read books to him.
It's something he and I can do together. Everything for Edward is
audible. Isaiah is always hearing chatter or stories–either from a
narorator, computer speech, phone speech, people talking, or me reading
to him. He does not like to watch TV. He generally likes to be very
active and pretend. We've always tried to explain things to him, such
as why it's wrong or why we don't want him to do it, even how it works.
His mind is just open to be creative and also to be caring and helpful.

So this year at HeadStart will be great for everybody. All the kids
will learn new thinigs, have fun, and Edward and I can do a bit of
educating on disabilities as well. I just can't believe it's already
time for Our little Isaiah to be in pre-school. Time flies, but at the
same time it feels like I've been deaf-blind forever when it's really
only been two years. But, you know me….Never give up. Have to keep
moving on and try to educate as many people as possible. I'm going to
see to it that THIS generation (kids of today) WILL be able to at least
fingerspell to a deaf person in the future.

It was time for my six-month evaluation at the National Institutes of
Health in Bethesda, MD. During the past week, I was evaluated and
monitored for any changes in my health due to NF2.

It was a nice trip.

Sunday was the day that my Mom and I traveled to Baltimore. This time
we did not have to wait at the airport after arriving for a couple of
hours in order to catch the shuttle to NIH. I'm not sure if they
changed the shuttle schedule, or if we just got lucky. As soon as we
landed and walked outside, we were able to catch the shuttle. The
weather was great there! A wonderful break from this dreadful heat in
Arkansas.

Once we arrived at the NIH, we had to go through security. Since this is
a government establishment, security is tight. We checked into the
Children's Inn and got something to eat. The rest of the day was spent
relaxing.

Monday, we headed over to the Clinic Research Center (CRC) building.
This is where everything is done. Hospital, surgeries, cafeteria,
clinic appointments, etc. We had to get new security ID badges (our
others had expired).

After that, I had a swallow study with the speech
therapist. EVERYONE remembers me. The therapist I work with is Beth.
She came to me in the waiting room and signed, "Hi" into my hand. I
knew it was a different hand, not Mom's. So I asked, "Is this Beth?" I
absolutely love it when people can do something as simple as
fingerspelling to communicate with me. I light up. We went back and
got started. The nasty tasting radioactive junk mixed with water,
pudding, etc. UGH! Everything went down fine. I am still able to
swallow just fine, which means I can eat whatever I want! That is
fantastic news to me considering now that I am DB I am rather addicted
to food. It stimulates all three of the senses I have left.

After that, I had a C-spine X-Ray. I have complete range of motion in
my neck again. Everyone thinks I am a sweetheart. I always thank the
people, and don't complain about what they are doing. When I was
leaving radiology, I said, "Thank you! Have a nice day." I was told
that I was a good patient.

Tuesday was a busy day for me. I went over to the CRC building and had
a pregnancy test and MRI. My legs felt like they were full of
electricity and I couldn't really stay still, but the radiologist said
it was doing ok (the scan). I ended up taking a valium anyway to calm
my muscles down, not that it helped much. I think I am immune to that
stuff now. When they pulled me out the second time, after the contrast,
I asked if I was finished. They said yes and I said, "Thank God!!! I
could not keep my legs still!"

We went back to the Inn for lunch after
the MRI, then it was back to CRC for rehab. I saw the physical and
occupational therapists. OT gave me a wrist brace for my left hand as
well for carpal tunnel (I already have one for the right).

I asked if they knew of any assistive mobility devices that I would be
able to use with my white cane so that I could get around on my own.
With a walker/rollator, I cannot use my white cane at the same time. I
have to be guided when using it, which is just someone watching where
they are going pulling the rollater along with them by the bar in the
front and me hanging on behind it. This works, but it doesn't allow me
to be independent. I hate having to wait for someone to take me
somewhere when I could do it myself if only I could use my white cane to
know where I'm going. The physical therapist said he wants to work on
my balance and ditch the walker, and any other assistive devices. If my
balance were better, I wouldn't need anything. I dream of that day! I
used to have great O&M skills, granted I could hear the traffic and cues
to help me orient myself, but just being able to walk unassisted with my
cane again would be wonderful.

He also did strength tests. I had to grip this metal looking bar as
tight as I could. There was also one I had to pinch with my index
finger and thumb. I have improved since surgery! My grip is a pound
stronger in the right hand, which is the hand I was having a lot of
trouble with. My coordination in that hand is also back.

Then we did a balance training exercise. It wasn't too difficult, but I
can see how it would slowly help. I said, "Well shoot I can do that at
home." I was told that it's best to have someone trained in balance
training to do it with me so they can give me feedback. They are going
to try to get me outpatient physical therapy for here at home. Overall,
I have improved since the last time I was in the rehab clinic.

After rehab, I grabbed a quick bite to eat and then went
back to the MRI. It was a shorter MRI, without contrast. I believe
they wee checking for delayed contrast in the inner ear. I don't
completely understand it. I didn't have to do that type of MRI the
first two times. Oh well, whatever they need, that is what I'm there
for.

When that was finished, I finally got to go back to the Inn and relax.
It was a tiring day. Much walking and activity.

Wednesday I was supposed to have an eye appointment, but it was
canceled. At 11 I went to rehab again to try E-Stim on my right leg to
see if the muscles in my upper leg would respond. Electrodes were put
on my right quads and electricity was kicked on. Tingling, pins and
needles. Ten seconds of electricity, then thirty second pause. Then
more electricity, stronger, and this process repeated. Soon it got
rather painful, like a hundred I.V's were being shoved up in my leg. I
told her, "Ok, that's enough." She was putting out over 600, but the
muscles did not respond. She tried the other leg, my strong leg, and it
responded right away with just a little electricity. RATS! I can't use
E-Stim to help bulk up the right leg. She told me I could try manual
strengthening. I asked if it would help, seeing as not even electric
could help. She said gradually, manual will help. I take it once
manual strengthening gets the muscles to contract a bit, then E-Stim
would work. Looks like I'm in for some fun with this darn right leg! I
will do anything to get it stronger though.

After that, I had nothing
to do for the rest of the day. I ended up meeting with a couple NF2
friends who were also there for their 6-month evaluations. We had a
good chat. I did have trouble reading their signs or fingerspelling,
but my handy dandy DeafBlind Communicator (DBC) was there as back-up.
We had supper together and I got a few pictures with them.

Thursday, I had bloodwork in the morning. Before I went back, in the
waiting room, I downed a couple cups of water. This is the trick. Have
water before you get poked and they won't have as much trouble. I have
tiny veins so usually its dig, dig, dig. I've met very few nurses who
could stick me without much trouble or pain. But, with my water this
time, they got it instantly. Five minutes and I was finished! I sat
with an NF2 friend and her mother for a few minutes while she was there
as well.

Then I headed up to the NF clinic to see the neurosurgeon. I was told
that my brain tumors–all of them–are growing slowly. My spine looks
fine. The tumor they removed in March is still completely gone.

In the past 14 months, I've had slow growth. No stability. This isn't
what I wanted to hear, but slow growth is better than fast growth. I've
had enough tumors decide to grow like wildfire. They told me there is
nothing to be concerned with at this time. "I think we should just
enjoy this period where there is nothing to be concerned with and no
worries for six more months. No surgeries are needed."

I certainly do love the neurosurgeons up there. So compassionate and
friendly.

The neurosurgeon called for the neurologist to discuss my twitching
problem. Yes, I am still twitching. The EMG in March showed that the
twitches were fasciculations. They tried to shrug it off as spinal cord
damage then. The neurosurgeon said, "I don't know why you are
twitching, but I do know that it is NOT spinal damage. The cord looks
fine, no compression or damage." So, the neurologist came in. I told
her about the twitching, how often they occur, what does not work to
settle them down, not even Valium, and how long it's been happening. I
told her there HAS to be a reason for these twitches. Could they be
mini seizures or something? She said, "You're right. There's always a
reason when neurological symptoms like this happen. I don't think they
are mini seizures though. I think they are discharges from the nerves
that have been damaged, irregular and to random muscles." She was going
to check into medications that could possibly help this problem, if not
eliminate it, at least make it less prominent. She is thinking of
giving me an anti-seizure med. She said, "I know that sounds confusing
since I said they weren't seizures, but sometimes one med for something
also helps other problems." So she's going to talk with the surgeons
and see what they think about putting me on that medication. Hopefully
it will help, if they do decide to put me on it.

After that, Mom and I went to the airport in Baltimore and flew back
home.

I got home around 10 last night. I didn't feel like turning on the
computer, and my cell phone was dead. I just came in and crashed.

It was a good trip. I am thrilled to know that things are fine on the
inside and I am free for six months. No worries, no surgeries. Just
enjoying life. I'll go back in six months and I hope at that time I am
even stronger and more improved. I am going to try hard to get more
physically in shape.

So there it is, that is how the trip to NIH went.

Since I am currently unable to figure out how to import my entries from
my old word press blog, I will give a bit of a summary so that any new
viewers won't be confused. I am still working on finding out how to
import my other entries.

Arkansas doesn't have many doctors experienced with neurofibromatosis.
The ones that are, they are experienced with NF1, not NF2. I have a
pretty serious case of NF2. I need excellent care. I was able to get
wonderful care for my last two brain surgeries. The first one, removing
the right acoustic schwannoma, was in Raleigh, North Carolina. The
neurosurgeon on the team was one of the best, and the neurotologist
trained at House Ear Institute in Los Angeles, which seems to be the
best for these obnoxious acoustic schwannomas. I was living in North
Carolina at the time, so it was easy to get that wonderful care.

The left acoustic schwannoma was removed at House Ear Institute in Los
Angeles, California. This was miraculous for me. It didn't even look
possible, but online supporters, family, friends, and the generous
doctors made it possible. I am extremely grateful for the help I
received. That surgery saved my life and also my smile. The tumor was
huge, but the surgeons managed to save my facial nerve and the only
thing that was destroyed in that surgery was the rest of my hearing,
which is NF2's fault, not the surgeons.

I was concerned about what I was going to do about my healthcare since I
was living back in Arkansas. I needed top notch care to ensure the
longest life possible. I want t o live as good a life as possible for
as long as I can for my son and husband. An answer came. The national
Institute of Health in Bethesda, Maryland was doing a natural history
study for NF2. The study would last 5 years. The patient would go to
MD every 6 months for monitoring, and if any surgeries relating to NF2
needed to be done during that time, they would do it there at no cost.
I sent in my information and got accepted into the study. For the next
five years at least, I would be well taken care of.

I have been in the study for a year now. In March I had a tumor removed
from the C3-C4 area. It was painful for a few days, but my body just
recovers amazingly quick. Within a month I felt completely back to
normal. I go back to the NIH in a couple of weeks for my 6-month
monitoring. I am praying for stability, but that's unlikely. I've
never had stable MRI's. I at least hope that there isn't anything to be
too concerned with at this point. I deserve a break from surgery for a
while.

I have been having a lot of headaches lately though, and sometimes get
tingly in my face. I have a tragiminal schwannoma on the left side (5th
nerve) and I am praying that it hasn't grown larger and is the cause of
these symptoms. I'm tired of them shaving parts of my head. I don't
want another brain surgery. I've had four of them, and that is enough
for me.

So if you all would keep me in your thoughts during the first week of
August, I would so appreciate it. Until I leave for the NIH, I will
just be hanging out around the house, trying not to get too hot. It's
been a scorcher out there! Maybe I should look for another book to read
to keep me occupied. Anyone got any good book ideas?

[Note:  This is being posted by Holly's friend Jeremy on her behalf.  The following are Holly's own words.]

On Wednesday, March 2, Edward, Mom, and I flew to Baltimore for my surgery that was scheduled for Friday. When we arrived at the airport, we had to catch a shuttle to the NIH. The NIH is in Bethesda, which is about a 45-minute drive from the BWI airport.

Once we got to the NIH, I had to check into the hospital. They performed all sorts of tests—-x-rays, bloodwork, urine analasys, MRI, etc. I met with the neurosurgeons, Dr. Asthagiri and Dr. Babington. They both were concerned with the twitching issue I have been complaining about. They wanted me to see a neurologist before they operated.

The neurologist came Friday and talked to me to see what was going on. She and another neurologist agreed that I needed an EMG, which didn’t please me a bit. They were busy on that day, so the EMG wouldn’t be until Monday. I was able to go on “pass” from the hospital.

I went to the Children’s Inn with Edward and Mom. I relaxed and did what I always do, read and play on my Iphone. My mom isn’t in to going out, exploring, touring, or anything like that. We just relaxed at the Inn.

Monday morning came and it was back to the hospital for me. I got checked back in, and my EMG was scheduled for 1 P.M. I asked them to sedate me. I have had two EMGs done before on my right leg. I knew this one was going to be all over my body since my twitching is everywhere. They said they would try to relax me. I was given valium before the test, and it never started working. I was worried about the pain, not tired, relaxed or anything. The neurologist ordered another one for me. I didn’t feel like that one worked either, I still wasn’t the slightest bit tired. She told Edward that it was working a bit. I guess she would tell by how the musceles were reacting.

The first part of an EMG–well, I guess it’s called nerve conduction study–is where they put electrodes on you, put something wet around them, and shock you. I think I was electrocuted yesterday! Every shock made my body jump, especially where the electrodes were. I was shocked all over my body, my legs, arms, hands, feet, etc. That isn’t the worst part though. If that’s all it was, I could handle it, no problem.

The real torture comes in when they get that needle and jab it in you and have you flex against it. I discovered that where there is nerve damage, the pain is excrutiating. If the area is undamaged, it’s painful, but tolerable. When she jabbed the needle into my chin and had me flex against it, I started crying. That area is still sore today. 

They did see the twitches I was talking about. Now at least people know I’m not crazy. I really am twitching, random parts, all over my whole body, at least every two minutes, sometimes several twitches in one minute. These are called fasciculations.

They aren’t sure about the rest of the test results yet. My right arm and hand showed nerve damage, but that is the little she could tell me. We have to wait for the results to find out why all this stuff is happening. 

The neurosurgeons came back and talked to me about my tumor and latest MRI. There are actually two tumors there. They will be able to get the one at C3 level without a problem. There’s another nerve root schwannoma at the C4 level. This is the nerve that controls things like your heart, diaphragm, lungs, etc. They will have to be very careful when they try to remove that tumor. They want to remove them both in the same surgery if they can.
What they are most concerned with is previous scar tissue from my C-spine surgery in 2000. They also see that in that surgery they removed bone and replaced it with plastic and screws. The screws they used can stick to the tumor, or cord. I forgot which they said, but it sounded to me like it will  be a bit of a  challenge for them.  I have risks of needing a permanant breathing tube if that  C4 tumor doesn’t play nicely.

I’m praying for a smooth surgery and a quick and easy recovery and strength and wisdom for the team that will be taking care of me. There isn’t much else  I can do. I just have to stay  strong and know I’ll make it in the end, no matter what happens.

Surgery will be Wednesday morning. Edward will let you all know how things go. Hopelly soon I’ll be able to update again myself.