Patience with Shades of Grey

I have a theory. God finds our weaknesses and puts us on a life track to combat these weaknesses. At least that’s how it has been for me.

I’m not good with being in limbo. It makes me anxious, irritable and nervous. Selling a house was torture. . .did they like it? Are they going to call with an offer? I would jump every time the phone rang for the 7 months the house was on the market.

I also do not have any patience. None. Zero. Zilch. Being pregnant was the longest nine months of my life. What would my child look like? Was she going to be a boy or a girl (what do you mean you can’t tell on the ultrasound????? This left me in tears). Then with my second child, going into labor at 32 weeks, then having constant contractions for the next 5 weeks while in the hospital and on bedrest was like God punishing me for not being a patient person. It had to be my fault. My poor husband. Did he realize he married someone with so little patience?

My children are so well behaved that luckily my patience isn’t tested often. I’ve also learned to take a deep breath and count to three (yes only three - I don't have the time to make it to 10!) when I’m feeling impatient. Why is my foot tapping? Why are my fingers drumming on the table? That’s my patience finding its way out of my body in an involuntary way.

I also know too much for my own good. I remember in OT school as we learned about the hundreds of different illnesses, congenital deformities and developmental delays that could happen to our children, wondering how any child could end up “normal.” We also joked amongst friends that irony will probably have our own children suffering from some of these issues.

Of my five closest OT friends (the Fab Five we called ourselves), between us we now have 10 kids. Eight of our children are completely normal. The two who have had delays and difficulties are my own. How could that be? My husband is athletic and intelligent. No history of obvious delays in his past. I’m not athletic, but I was always ahead of my peers in school work. We walked on time, talked on time and had a completely normal childhood. Why are BOTH of our children suffering with delays?????

First is Melanie. She seemed to develop normally for the first few months of her life, other than a strange pupil that was larger than the other resulting in a trip to Boston for an MRI at three months of age, then some funky positioning at five months old sent us back to the neurologist who found her to be “just fine.” But she didn’t crawl until after a year old and walking wasn’t until 16 months and even then she was soooo fearful of falling. Everything else came late too. The doctors said not to worry, she’s still young but we can have her seen by early intervention. Early intervention ended up working more on her speech than gross motor skills. Once she hit three years old she no longer qualified for early intervention and the doctor suggested to start physical therapy.

The PT worked on her balance, stairs, tricycle riding, etc. . .When I saw her evaluation form I about fell off my chair. Hypotonia was the diagnosis the PT had put down for reimbursement from the insurance company? Hypotonia? Was Melanie hypotonic? How could I have missed that? If it’s hypotonia doesn’t that mean there is a neurological component to her difficulties? I ran it past the PT. “Do you think we should have her seen by a specialist?”
“Wouldn’t hurt. You should follow your instincts. If you want answers you should search for them.”
Back to the doctor for us…I used the PT as an out. “She thinks we should have Melanie seen to see if there is a diagnosis we’re missing.”
“Hmm.. . She seems great to me. (based on what? Her walking five steps across the room?) I don’t really see any low tone, but I will trust your instincts. I’m sure you don’t want to go all the way into Boston. I know a developmental specialist closer to us that should be able to help you.”
“Ok, if you think that’s best.”

The developmental specialist was thorough and comforting. He was the first person who narrowed his eyes when I told him Melanie’s difficulties and really searched for a cause. He reviewed her MRI from three years previous and found hydrocephalus on the report.
“Hydrocephalus?” I asked. “No one ever told me the MRI showed hydrocephalus.”
“Yep and a thinning of the corpus collosum.”
“What does that mean?”
“I would say your daughter as static congenital encephalopathy.”
OK, I know my medical terminology pretty well. Static means not changing, congenital means from birth and encephalopathy is a condition of the brain. So she has something wrong with her brain since birth that is not going to get worse. It sounded like a category to me more than a diagnosis. It also sounded like the definition of cerebral palsy.
“Is it CP?” I asked him?
“Well, I didn’t want to use that term because of the negative connotations surrounding it. But yes, static congenital encephalopathy is another way of saying CP.”
CP? My daughter has CP? Well, I guess it makes sense. But I think a lot of people are tossed into that diagnosis because they just can’t determine what else it could be. For awhile I was satisfied. She continued with her therapy and her activities to help her get over her issues and fears. Horseback riding, gymnastics, dance, PT and me working on her skills at home as much as possible with obstacle courses, bike riding, jump roping, etc.

Then comes Kylie. She’s almost three years younger than Melanie. I remember at the visit where the specialist tossed out the diagnosis, Kylie was just over one year old and not talking yet. I mentioned it to the doctor that day. “Give her a few more months and give me a call if she still isn’t saying much by 18 months.”

At 16 months she started early intervention. Before she turned two we were back at the specialist for Kylie this time.
“Well, she has really low tone.” He tells me. “That could affect her speech. She can’t learn to talk if she doesn’t have the muscle strength to do it. She needs more than just early intervention. Get her started in speech ASAP.”
There’s that low tone term again. Neurological bells went off in my head.

More therapy, more activites, more work at home for all of us.

Something was nagging at me. Why these developmental issues for both my children? I asked the pediatrician. Could they be linked? Could they both have something? The same thing possibly that causes a little bit different symptoms?
“Why don’t we schedule an appointment with a geneticist?” The doctor suggested.
“Geneticist? Not a neurologist?”
“No, geneticist is the way to go.”
“Ok.”
The geneticist appointment took a LONG time to get to. They were scheduled months in advance. Finally we made it there. Melanie talked up a storm and showed off her skills. Kylie sat quietly on my lap with her thumb in her mouth. “They look great.” The doctor said. “I don’t think we’ll find anything, but let’s run some tests.”
Ten vials of blood and three months later we’re back for the results. “Nothing. They’re both fine. Come see me in two years and maybe there will be new research and new tests that we can do if you are still concerned.”

OK. It’s official. I’m psycho. I’ve put my children through all these appointments and all these tests and there is absolutely nothing wrong with them. I give up. I’ll just continue to work on their skills, continue with the activities and therapy (now the specialist wants Kylie to see a speech therapist outside of her school speech for more intense work and a PT and OT for work on her overall body muscles AND a child psychologist to address her OCD tendencies. Forget it. There’s nothing wrong with her. Why do I have to do all that?)

Then the phone call came. My mom had been having a lot of dizziness, balance issues, vertigo and lightheadedness lately. She had undergone lots of testing and now the diagnosis was in. “I have what’s called an Arnold Chiari Malformation.”
“Wait, I’ve heard of that in school but I can’t exactly recall what it is.”
“It means that part of my cerebellum is herniated below my skull. It can cause problems with dizziness and balance. I have to have brain surgery.”
My fingers start typing in google. Tons of websites came up. I started reading the symptoms list.

First I should back up. When I was 17 years old I started having trouble swallowing my food. Any kind of meats or breads or heavy vegetables would get stuck halfway down my esophagus and would just sit there. Sometimes it would go down on it’s own eventually (but nothing goes past, so any swallowing I do after it’s stuck comes back up. Ew). Sometimes I would have to go to the hospital to have the food pushed down. I was given swallowing tests, xrays, you name it. Nothing other that a very small hernia was found. But the specialist didn’t seem to think that could be causing all my problems. Eventually I was give the diagnosis of Achalasia (esophageal motility problems for NO KNOWN REASON). At the same time I started having problems with my hip. Unbelievable hip pain would bring tears to my eyes with each step I took. Another doctor, more xrays, more of the same, “I don’t see anything wrong.” He gave me arthritis medicine. It seemed to help a little.

Seven years ago my right ear clogged up. It felt like I had been swimming at 11 feet depth and the water was stuck in my ear and wouldn’t come out. My jaw and neck would hurt too, especially when I was tired. The ear pain/pressure was constant and unchanging. I went to two different ENTs and an audiologist. “I don’t see anything wrong.” Seven years later – the ear pressure is still there, same as it was day one.

Now back to Google. The symptom list came up. Here are the ones related to us:
Hydrocephalus
Vertigo
Ear pressure/tinnitus
Dysphagia (difficulty swallowing)
Esophageal Motility problems/Achalasia
Weakness
Incontinence
Decreased tone
Imbalance
Clumsiness
Slowness and slurred speech
Jaw/ear/eye pain
Chronic Coughing
Word retrieval difficulties
Leg cramping
Blurry vision
Joint pain (hips)
anioscoria (pupil size difference)

I read the symptoms over and over.
Click
Click
Click
Click

It all fell into place. Not just for my girls but for me as well. My hands were shaking as I called the pediatrician and explained it the best I could. The nurse was skeptical. She spoke with the doctor and called me back. The doctor was skeptical. Anger surfaced in me. For the first time in this journey I was really angry. I typed out a long and detailed email to the pediatrician with the research I had done and my daughters’ symptoms. They agreed to see us and were very nice (but still skeptical) when we came in. She granted us an appointment with a neurologist in Boston (finally!!), but it would take several months before we could be seen. Fine. I’ve waited this long.

Now, my turn. I called my doctor. He was less skeptical because he was generally clueless about Chiari – “What is it called? How do you spell it?” He granted my visit to a local neurologist. I went and was meant with outright skepticism and hostility. “Swallowing problems and ear pain are not associated with Chiari.” She said looking at me intently. “Your cranial nerves are intact and your balance is fine. I’ll do the MRI to appease you.” Fine. I don’t care if you agree with me, but as long as you’re doing the MRI I’m satisfied.

The results came back quickly. I went in for the appointment which lasted exactly 30 seconds. “No Chiari.” She said. I held up my MRI films I had brought in. “You don’t want to see these?”
“No need. I read the report. No Chiari.”

“Oh.” Wow. How sure I was. I looked at my girls. If I don’t have it, how could they? How could my mom have it, skip me and give it to them? The likelihood didn’t seem possible. Do we still go to Boston and put them through all that? I’ve waited this long, might as well.

The pediatric neurologist was nice, but skeptical. “Melanie’s balance issues warrant an MRI just to rule it out and put your mind at ease, but Kylie’s hypotonia is not associated with Chiari so an MRI on her would be fruitless.” She diagnosed Kylie with “benign congenital hypotonia” (low tone from birth for no known reason). I hate the “no known reason” phrase. More standing on one foot, hopping and running down a hallway. When is someone going to ask them to go up and down stairs or climb up and down a ladder? When are they going to ask them to jump off of a surface instead of just jumping straight up in the air? I do a more thorough exam on kids when I test them for OT.

Melanie’s MRI came back several weeks later and I received the phone call from the doctor with the results. I hadn’t had to have patience because I was convinced it would be the same answer as ever (She’s FINE). But this time it was different. “Melanie’s MRI shows a Chiari Malformation.”
“Really???”
“Yes. She should see a neurosurgeon.”
“Really?”
“Yes.”
“How could she have it and not me?”
“That’s curious. I’d like to look at your MRI when you come back to me for your three month follow up.”
“What about Kylie?”
“I think we should do an MRI on her as well.”

Really? I was in disbelief. Was I happy or sad? Relieved to know? Or upset about the possibilities for the future? I dove into more research and found 16 hours worth of Chiari videos on-line. I had my homework to do.

But how could I wait three months to have my MRI looked at again? Surely my neurologist will see the connection and offer to review it personally. I put in the call, then another, explaining the situation. She has not called back.

Kylie’s MRI came and went. This time I was very impatient for the results. I had to know right away. Finally they came in. “No Chiari on Kylie.”
“Really????”
“Really. Completely normal brain scan.”
“Good.” I was relieved. But I still didn’t like the phrase, “no known reason.”

More research. I’ve found that people can have Chiari even with a 0 mm herniation. A radiologist won’t even comment on that. The tonsils of the cerebellum can be positioned in such a way to block cerebral spinal fluid from going up and down. You can’t see CSF on an MRI. Could this be me and Kylie?

Off to Melanie’s neurosurgeon. . .Finally we will get some answers I hoped. He even agreed to take a look at my MRI report.

Wrong. More grey. Greyer than grey. He said sure there is a herniation there on Melanie’s MRI, but it’s not much. And by definable standards by the National Institute of Health not even classified as a Chiari. In fact your herniation (mine) is bigger than Melanie’s, but still not Chiari. So I DO have a herniation. . .I knew my neurologist should have looked at the scans herself. Kylie’s scans look fine. . .but should be monitored as well as she grows.
“Why the symptoms then?”
“Don’t know. Could just be one of those things. You can do an MRI of her spine if you want to see if there is a tethered cord, but no rush. . .”
Thanks for nothing. . .

So more research. . .numerous sources state that even a 0 mm herniation can be devastating. Now I know for a fact I have a herniation and maybe this ear pressure, neck pain and swallowing issues are related to it. My new found support group has all rallied stating the doctor sounds like a “ding dong,” and we need to be seen by someone who will look at more than just an MRI. We need a cine MRI to measure the flow of CSF as well as a variety of other tests. Off to my primary to try to explain this mess and see where we go.

I’m fine with what he said about Melanie. He agreed she needs to be monitored over time. When she hits puberty the herniation can increase. We need to watch for signs such as headaches, neck aches, dizziness, etc. And we probably should get the spinal MRI to see if her spinal cord is attached to her vertebrae. That could explain the leg cramps and other issues (don’t want to embarrass her here). Would we do surgery to correct that? Doubtful. I don’t think having someone poke around her spinal cord is worth it. The symptoms she has now are manageable.

For me, I need to do something ASAP. My swallowing issues are worse than they have ever been and the ear pressure seems worse too. I find myself taking Ibuprofen just about every day for the ear pressure and headaches. That’s something new. It has been there for a long time, but not to the extent that I couldn’t ignore it. Also my right eye goes foggy on and off, which has also been happening more frequently. (like right now this very minute!).

I told Tom last night that I need to live in a world where you can stick your finger in a scanner and the computer spits out everything that’s wrong with you. Then a little laser can zap your body and correct all the deficiencies. Why don’t we live in that world yet????

We have more appointments, more specialists and more info to slooooowwwwwwlllly discover. . .

Time for more patience and a willingness to see the world is just full of grey.

Family updates

Tom's grandmother, Teresa Davis passed away on Sunday from a brain hemorrhage. She was 95. We attended the wake last night and saw family members we hadn't seen in years. The funeral and burial are today, but unfortunately Kylie woke up with a fever this morning so she and I are staying home while Tom and Melanie spend the day with the family. The photo of the girls is from the wake last night. The little girl is Ridley - Tom's cousin Leah's 2 year old daughter. She would be 3rd cousin to the girls? The other photo is of the photo board of Teresa - lots of great images from her life.

On Monday we have Melanie's appointment with the neurosurgeon. Since her diagnosis I have been doing a ton of research on Chiari. I have joined two Yahoo Chiari groups and I have exchanged emails with many, many other Chiari patients who are so helpful in their advice and sharing of their stories. I have a long list of questions for the neurosurgeon on Monday and even sent him an email ahead of time (to warn him mostly that we are coming and to be prepared!!!!). He emailed me right back so that was a bit comforting. Although he already has mentioned that he does not agree with some of the "experts" on Chiari (which is the source of most of my research). It will be an interesting appointment. Tom has suggested that I keep an open mind and be optimistic. After all, Boston's Children's Hospital is one of the most renowned hospitals in the world.

Wish us luck on Monday!!!

A Very Davis Christmas

We spent a portion of Christmas vacation in New York City on the way to visit Tom's brother's (Steve) family. Here is a diary of our trip:

Saturday December 22: Santa made an early surprise visit to our house overnight. The girls woke up to find he had delivered their American Girl Dolls early. They also were happy to see tons of presents under the tree from my side of the family. We had a great time opening our gifts then headed out for our car trip to NYC. . .

By 6:00 Saturday night we had found our hotel in Jersey City. We had an excellent view of the city from our hotel room and a view of the Statue of Liberty during the clear daylight.


As soon as we settled in, we hopped the PATH (New Jersey Subway system) and found ourselves coming above ground right in the middle of the hole that used to be the World Trade Center. What a humbling and sobering sight. After switching trains, we headed into Times Square. WOW! We have never seen so many people in one place before. We quickly forgot our plans to grab a bite to eat in a restaurant and ate on the street corner outside Toys R Us and MTV studios (hot dog for me, pretzels for the girls and Tom).

After a visit to M&M World and the Hershey Store and a NY pizza place, we took a walk toward Rockefeller Center where we saw the beautiful tree all lit up and checked out Radio City Music Hall where we would be in the morning.

Sunday, December 23: Up Early!!! We hopped the subway (we're pros already) and headed to Radio City Music Hall for the 9:00 performance of the Rockettes for the Radio City Christmas Spectatular. A 3-D ride from the North Pole to NYC, then a tour around the city, followed by tons of dancing and singing by the Rockettes left us all in the Christmas spirit.


Then we walked to the American Girl Place (the girls couldn't wait) for a couple hours of shopping fun. Lunch at TGI Fridays was good (wow- $20 for a sandwich????) and reenergized us for our next adventure.

We hopped the subway again and headed to the Natural History Museum. We were met with a LONG line to get in followed by crowds galore inside the museum. There was soooo much to see!!!! The girls really wanted to see the African mammals and the T Rex, so we made those a priority and then called it a day.

Back to the hotel to rest and try to catch some of the Patriots game while the girls tried their new clothes on Julie and Molly (their American Girl Dolls). Tom was able to meet up with an old friend from Kansas. . .Goofball, also known as GB or better known in NYC as Michael (Is he really a title insurance salesman now????).

Monday December 24: Up early again. . .we packed our bags and headed out of the hotel for a few shots of the skyline and Statue of Liberty. We jumped the PATH again to go back to the American Girl Place for brunch. This time the girls (dressed in their Christmas dresses) brought Julie and Molly with us. One small, minor mishap on the subway (just when we were feeling like pros) left us a bit shaken, but all was well when we got to the destination. The girls loved the brunch experience, then we headed back to the hotel, packed the car and headed out of the city: Destination: Carlisle, Pennsylvania.

3:00 Christmas Eve - We arrive at Steve's house earlier than expected. Tom heads out for a run while Melanie and Kylie get reaquainted with their cousins, Liam and Lucas and their step-cousins, Mariah and Cerena. A Christmas Eve dinner of delicious Ravoli cassorole was followed by stories around the Christmas tree then spreading reindeer food on the front lawn and singing Christmas carols. Off to bed for the six kids. . .Santa is on his way!

Christmas Morning: Presents for 12 people takes up a lot of room!!!! The kids were so excited to start tearing into everything. Opening gifts was a bit chaotic, but the kids sure did have fun. Steve and Dawn's gift to their kids was the Wii system. So, guess how the rest of the day was spent??? The kids (and dads) really had a great time with Wii, especially the golf and bowling. But I think the most hilarious and fun time was watching Tom and Steve boxing. I haven't laughed that hard in a long time. Dinner of ham AND turkey was extravagent and delicious!

Wednesday December 26: Another day for the kids explore the Wii and play games, play Barbies, play house. . .you name it, they did it. Tom and I took a trip into town with Dawn to see some of the sights and run a couple of errands. Then we took Steve and Dawn out for a Mexican thank you dinner while Beach Grammy and Grampy took care of the six kids. Thanks guys!!!

Thursday, December 27: We packed up our car one last time and took a bunch of family photos before heading back to New England. A LONG drive through Connecticut with tons of traffic was frustrating, but we finally pulled into Tom's dad's house in Rhode Island for a Christmas celebration with him and Donna around 7:00. More gifts, conversation and food! Then wearily we headed home to Cape Cod where Jayhawk was eagerly waiting our return (not really. . .I think he barely lifted his head when we came in!).

Crossroads

Last summer I wrote a new book titled Crossroads. After I wrote it I
let it sit for awhile because it was kind of an emotional story for me
to write. It's about a family's struggle with a cancer diagnosis and
it was inspired by my best friend who recently combatted cancer
(successfully). As I was writing it my father in law was going through
chemo and radiation and just as I finished it, my father was diagnosed
with cancer and my mother underwent brain surgery (all in the same
week). It was tough for me to read it again to edit it (and my mom is
my usual editor), so it remainied untouched for awhile. Once she was
feeling better I sent it to her and she edited it and I gave it to
family as Christmas gifts. I have gotten such a positive response from
those who have read it that I have decided to release it to the
public. It's NOT a sad story! I don't like sad stories or sad endings,
so you will never catch me writing one. It's about strength and
inspiration during tough times (with a side story of mystery). If you
are interested you can purchase the book at www.lulu.com. Enter my
name Kelli Davis in the search and you will be taken to all my books.

Here's the synopsis:

Corruption, scandal, murder, intrigue. Anne Stone deals with these
issues on a daily basis with unflappable conviction. She ran from
abuse at the hands of her alcoholic father to become one of the
nation's top investigative reporters. One call from her sister, Megan
threatens to disrupt Anne's career when she finds out that their
mother, Anita has been diagnosed with breast cancer and is refusing
treatment. Anne remembers her mother as a person who never stepped in
to help Anne when her father was on a rampage and Anne has to dig deep
within herself to find compassion for a woman who turned her back on
her own family.

Anne's love for her sister ultimately is what convinces her to return
home and offer support. Once home, Anne is forced to work on her
relationship with her mother and often is tempted to give up and
return to New York. But something helps convince Anne to stay in
Colton, Colorado and it has nothing to do with Anne's mother or
family.

Enter Kaylee Taylor. Kaylee is a feisty, imaginative six year old who
is battling leukemia for the second time in her young life. She shares
a chemotherapy room with Anita and brings life and joy to a dismal
setting. And beside Kaylee sits her father, Jake Taylor - a man whom
Anne grew up with. As children they skipped rocks, climbed trees, rode
motorcycles, skinny dipped and played practical jokes on their
siblings. Jake knows all about Anne's troubled home life and may hold
the answer to her being able to put the past behind her.

Sweet Snowville and Foggy Bottoms

We spent our snowy, rainy, windy afternoon indoors today making a Gingerbread house. The girls had fun creating their masterpiece with a little eating along the way. We added the little Gingerbread house that Melanie made at a party the other day to the scene as the dog house. They named the big house Sweet Snowville (since we are snowed in) and the dog house is Sweet Foggy Bottoms (since it is so foggy outside we can hardly see the neighbors houses right now). Tom keeps saying he's going to eat them. . .but I'm more worried about Jayhawk since he ate last years Gingerbread house!

Cheetalishish Christmas

After only four weeks of classes, Melanie's hip hop group put on a little Christmas show for the parents. I recorded it as you will see below. The first is only part of the routine because my memory card became full. The second is the full routine, but a back view most of the time. Watch them both for feel of the whole performance. I think the girls did great for only practicing for four weeks!!!

Cheetalishish Christmas (Front view - Partial routine)

Here is the partial front view. My memory card filled up half way through, but you can see Melanie's face more. . .

Cheetalishish Christmas

Here is Melanie's Christmas Hip Hop routine. For some reason the instructor had us sitting behind the girls, so I got the back of Melanie. She's in the first group that comes out with the short black pants (white socks). They performed it again and I got some from the front, but my memory card ran out half way through the performance.

Lady Frostina the Snow Girl

We got about 6 inches of snow the other day. Melanie's school let out early and she, Kylie and Jayhawk spent several hours playing while it was still snowing. Then Friday Kylie and I had fun building our snowgirl! Kylie says it looks like she's wearing a skirt (sorry I can't make the perfect snowman) so she has to be a girl and her name can't be Frosty. Oh and that's not a pipe in her mouth it's her "whistle." So, here's our creation. . .

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Kylie's Family Party

Since life is crazy for us the next few days and on Kylie's actual birthday (Tuesday the 11th), we decided to celebrate as a family on Saturday. She opened her gifts yesterday afternoon. You may notice we acquired a new piece of real estate. . .that's the Barbie House from my parents. Kylie wishes to tell Grandma and Grandpa, "The Barbie house is the best birthday present ever!!!"


She also loves the Bride Barbie from Beach Grammy. . .she opened that up and moved her right into her new house along with 30 of her best Barbie friends. Tom and I gave her the Leap Frog talking globe and the HS Musical cheerleader outfit for dress up play. We also gave her Honey Pie Pony for her Strawberry Shortcakes, Shrek the Third and the Hannah Montana - Meet Miley Cyrus CD. She loves the magnetic dollhouse from Uncle Eric, Aunt Joni and Alex. Thanks everyone!!!

After gifts we headed out to dinner to the BBC (British Beer Company - Kylie's choice) where we all feasted. Kylie and Tom shared a pizza and Kylie almost ate 3 pieces! Then the waitress surprised her with a big piece of chocolate cake for dessert.

After dinner we bundled up and went to Heritage Museums Spectacle of Lights where we got to see Santa and ride the carousel while walking through beautiful light displays. It's one of our family yearly traditions and seems to get better every year.

Today we are hanging out at home. . .Melanie has been fighting a cold and ended up awake last night with a fever and horrible sounding coughing and wheezing. She's feeling better except tired this morning, but I thought we should stay home. So, I found a substitute teacher for Sunday School. They are happily playing with all the new toys and we are going to have movie and game day in our PJs.

Ballet Routine

Kylie is harder to see in this one. She's on the far right, kind of behind the teacher. This is part of the routine she will be doing for her Peter Pan recital - they will be Tinkerbells.

Tap Routine

Kylie had her observation day at tap/ballet class and I played around with my movie feature on my camera. I guess I didn't realize how easy it was to use, or else I would have been making tons of movies all along! And if I can upload them, watch out! I have a whole new hobby! Here's a tap routine that she did.

Over the Rainbow

We celebrated Kylie's fifth birthday on Sunday with a Wizard of Oz theme. Our guests were greeted with a yellow brick road at our entrance leading them into the basement (Over the Rainbow). (Notice the squished Witch?)


Their first stop in Munchkinland was to make their very own ruby slippers, then Melanie (AKA Dorothy) led them on a scavenger hunt to find the witch. Along the way they found Toto and two of the witch's brooms. Then they had to reassemble their own scarecrows which gave them their "diplomas." Then they had to chase rotten apples out of the forest (relay race) which awarded them their badges of courage (and helped them find and melt the witch). A fun game of don't get stuck in the witch's castle when the music stops was a blast. Finally they had to help the tin man get his heart and were awarded with their own heart necklaces. All the girls clicked their heels together and said "There's no place like home," and were transported back to Kansas (upstairs) for cake and ice cream.

Making our ruby slippers



Our scarecrows were really cute! Thanks Beach Grammy!

As soon as everyone left, Kylie couldn't wait to try on one of her presents from her school friend Jessica. Perfect gift!

Updates

Kylie was very brave and held really still for her MRI. The results came back 4 days later and showed no Chiari! And a completely normal brain. Thank goodness!

An update on my parents. . .mom is still feeling pretty good. She has occasional headaches and has to be really careful not to overdo it. My dad is still feeling pretty tired. He had his first appointment with his oncologist last week and has more testing to undergo. They still can't find the primary site of the cancer and can't proceed until they do. . . the cancer on the small intestine was on the outside of the intestine, so they know it is coming from somewhere else. He also has to have a surgery to reduce the size of his prostate which is going to happen very soon.