Tuesday, January 3, 2006 7:02 PM CST
Happy New Year everyone and Happy 21st birthday to Josh (January 2nd)!
Another Christmas has come and gone and thankfully it was a very enjoyable season for our family. After several years of really bad Christmas’, I was determined to make this one special. I told the guys to get out their wallets and hit the malls.
We had a blast planning and plotting against each other. Poor Josh was stuck in the middle of most of the plotting! He knew what each of us was getting and it was very hard for him to keep it all a secret!
Due to work issues we had to cram our holiday into one weekend. The doctors decided not to close on the Monday following Christmas because we’ve been so busy. We are in the process of adding a new computer system at work. With five doctors, one nurse practitioner and 35 employees, this has been a huge undertaking. We’ve all been working a bunch of overtime and we went live with the new program on January 2nd. So far so good, but we are all worn out! Hopefully we will learn the new system quickly and things will return to normal.
With all that is going on at work it seems like Christmas and New Year’s came and went way too fast! Brian and I bought new beds for our niece and nephews for Christmas. We spent Friday night at their house assembling everything while they spent the night with their Dad. The kids came home on Christmas Eve to find their bedroom doors shut and wrapped with holiday paper. Becca closed off the stairwell to their upstairs rooms with a wooden Santa as the gatekeeper! It was really fun watching the kid’s anticipation of going upstairs! Becca and Eddie bought them accessories for their rooms. All three of the kids were really happy with their Christmas!
We left Becca’s around 4:30 and headed home to celebrate our Christmas together. I wanted to start a new tradition where it was just the three of us. We had a really nice night together on Christmas Eve. We made dinner, lit candles, played Christmas music, unwrapped presents and watched a Christmas movie.
On a side note, I was so happy to hear from those of you who received your Christmas cards that included Moonflower seeds! I can’t wait for spring to get here! Hopefully the pigeons won’t eat Laura’s seedlings again this year!
I’m curious to know if they will grow in England! Everyone has to let me know if they have success!
Love to each of you and many blessings for the coming year!
Jess
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Dearest Angel Kaity,
I hope your Christmas in heaven was a joyful one! I know you were looking down on the three of us all throughout the holiday.
Angel Moment??
Josh and Brian left on the Tuesday following Christmas. I had a really hard day at work and crashed in the recliner to watch a movie. I was enjoying the quiet after the hustle and bustle of the holidays. For those that may not know, we converted Kaity’s bedroom into our sitting room after she passed away. This is the room where I held her in a rocking chair and watched her leave this world. Much of my relaxation time is now spent there. Her gravesite and other areas mean little too me because it is this room and my flower gardens where I feel closest to her.
Tuesday night, our big fat cat jumped in my lap to share my quiet evening. It is our nightly ritual. She waits until I’m comfy, cozy and wrapped in my favorite blanket and then proceeds to make her bed in my lap. I guess this is her way of getting all the attention she feels she has been so desperately deprived.
In the middle of her “nesting” she looked directly over my shoulder. Her eyes grew as large as quarters but she didn’t have a frightened look. She had a very sweet, sort of puzzled look on her face. She sat very still and did not move. I asked her what she was looking at but she never took her eyes off of the back of my chair. She starred for thirty seconds or more. I’m not sure if cats can sense a presence but I had the strongest feeling I was not alone. It’s hard to explain but I just knew Kaity was there. It’s not a scary feeling either, it’s more of an overwhelmingly happy, peaceful moment. I finally got impatient with the cat’s reaction and decided to take a look at what was holding her attention. I reached out my arm and swayed it in the wind and said hello to my baby, the entire time praying that it was truly her presence that I was feeling.
You are only a heartbeat away baby…I miss you.
Mommy
Sunday, January 15, 2006 7:08 PM CST
Just a quick journal entry to update everyone on the last few doctor’s visits that I have had. For those that may not have read, I have a tumor on my pituitary gland that has significantly grown in size. It is not yet what they would call “macro” in size but large enough that the doctors would like to see treatment started now, before the tumor becomes any larger.
I saw a heart doctor and a Neurosurgeon back in the fall and decided to wait to see the other specialists until after the holidays. On Thursday (Jan 12th), Brian took me to see an Endocrinologist and an Ear Nose and Throat Doctor. I was really pleased with both doctors. Neither doctor would give me definite answers until all my tests results come back. I have a follow up appointment with the Endocrinologist and she will hopefully have a few more specifics. She is currently testing my blood and urine looking for any hormones that may be deficient.
The Ear, Nose and Throat doctor explained what his part will be in assisting the Neurosurgeon if surgery is decided upon. He will be responsible for breeching the nasal canal and opening a passage way for the Neurosurgeon to retrieve the tumor. He said I would have a minimum of two to three days in I.C.U. and one to two weeks of total recovery time.
Doctor number five will be seen this coming Thursday. He is an Ophthalmologist and he will be testing my field of vision. I honestly do not feel he will find anything wrong but he is on the line up of doctors to see. The tumor lies so close to the optic nerve that they must have a baseline report that everything is okay with the optic nerve.
Doctors number six and seven will be an Oncologist and a Neurologist. Both of these doctors specialize in all the things that can go wrong with the brain (and body) when a tumor is involved. They are simply second opinions. My primary care physician wants to hear from as many doctors as possible before we agree on surgery.
(After hearing the details of surgery, I was more than okay with his suggestion)!!
I’m really not sure what will happen in the next few weeks. The blood and urine samples are very important because it is going to show the doctors exactly what parts of the pituitary gland has been affected and what type of tumor we are dealing with. There is also a chance that the Pituitary Stalk is involved. If that is the case, it would explain why my baseline hormone tests were all normal and would also explain my irregular heartbeat and other symptoms.
Only time will tell I suppose. I’ll keep everyone posted.
~Jess
Sunday, February 5, 2006 5:45 PM CST
A lot has happened since I last wrote, but sadly nothing is yet determined as far as the care I will receive with my pituitary tumor. I’ve seen countless doctors and each of them have sent me to different specialist. I have learned that the tumor is non-functioning, meaning that no hormones are being produced. That was definitely good news!
One of the doctors has mentioned medication to shrink the tumor, and I’m leaning more towards his suggestion to see if it will work. The medication has a tendency to make people really nauseated and dizzy but once your body adjusts the symptoms will taper off.
The oncologist and family physician would like me to go somewhere that specializes in Endocrinology and they suggested Mayo clinic. I had a problem with the distance involved and did a little research on line. I found a doctor at Indiana University that is world renowned in dealing with pituitary tumors. Neither doctor had a problem referring me to Bloomington instead of Mayo so that is where I’m going in March.
For the last several months I’ve felt shoved from one doctor to the next so hopefully these guys will be able to narrow down the proper care. Medication versus surgery seems to be the big topic. I’m hoping and praying that the medication will work. The only pitfall is that it’s only a temporary fix. If I go off the medication the tumor will return to normal size. The surgeons argue with the non-surgeons about this medication. Their argument being, “Why put the patient on medication that is not going to cure the problem?” The Neurologists argue, “Why have surgery when the medication could possibly shrink it?”
Quite frankly I’m totally fed up with everyone’s uncertainty and I’m hoping the doctors at I.U. Bloomington will give me the best…and hopefully final advice.
Jess
Wednesday, March 8, 2006 6:05 AM CST
Thank you to everyone for your kind words in Kaity’s guestbook. I always read my messages and it is nice to know you are all here.
There is not much to update as far as my health issues. I have another MRI scheduled at the end of March to see if the tumor has grown. If it has not grown, we are going to wait another six months and check it again. A few doctors have suggested surgery but I’m just not ready to do it. Surgery will require traveling out of state and I guess I’m buying time and hoping for a miracle. One of my doctors put me on a medication to help my headaches and it is really working. My headaches are virtually gone!
Work is going pretty good. December 27th marked my one year anniversary and my evaluation went well. I’m literally counting the days until my very first paid vacation the second week of May. I’m so excited about it! Brian and I may take off for a few days but the rest of my time will be spent in my garden. We will also be celebrating our 17th wedding anniversary on May 20th.
Brian leaves Sunday for the Caribbean. The Dog!! He will be working there for two weeks. He’s not really excited about going and fears he may starve to death due to lack of his favorite foods! I assured him there are plenty of coconuts in St. Vincent but that didn’t seem to comfort him.
Josh is now living in his apartment with his girlfriend Holly. They seem to be happy. He is still working with his Dad and Holly recently found work with UPS. Hopefully between the two of them they will have an easier time paying the bills.
That’s life for now. I’ll write again when I'm given the latest MRI results. Brian and I look forward to seeing everyone in July at the conference. We are counting the days!
Love,
Jessica
Monday, April 3, 2006 6:03 AM CDT
Happy Birthday in heaven sweet Kaity…
Kaitlynn would have been 15 today. She always loved birthdays and I’m sure she is having a grand celebration today. One of her favorite books was Happy Birthday Moon. Every time Brian and I see the moon we will repeat her words, “Happy Birthday Moon!”
She would never eat birthday cake…she hated cake! However she loved the fact that each year her family would get together and bring her tons of birthday gifts. All attention was centered on her and she definitely liked that!
Kaity,
I pray that you are enjoying your special day in ways that are unimaginable to us. Sending many prayers of peace, happiness, and overwhelming joy on for your heavenly birthday.
You are loved and deeply missed,
Mommy, Daddy and Josh
Tuesday, May 2, 2006 8:16 PM CDT
Happy Spring to everyone! Can you believe that April is already gone? April is my favorite month and I hated to see it go. There is one good thing about May’s grand entrance...My vacation starts on the 12th ...Wooohooo! I am so ready for some time off!!
Brian and I will be staying home and working around the house. Two days ago we made a trip to the lumber yard and purchased the supplies for my new shed! Brian is determined that I move my rakes, tiller, tractor, and other gardening supplies from his premise! I have no problem moving into my own space but I told him that my space would have to be a “girly-girl – potting shed.” None of that nasty old metal for me! :)
We spent the winter hunting for a design I would like. My “space” will look similar to this building:
Click here for the link The differences will be #1 THE COST, because Brian is designing his own and #2 my building will be larger because he’s putting a lean-to on one end. The lean-to will house “MY” John Deere Tractor and “MY” John Deere Wagon. They used to be “HIS” yard machines, but he lost rights to them when he kicked me out of the garage. *Big Grin
He is also using old barn wood on the outside instead of the pine that is shown.
It took us weeks of shopping to find the antique windows I wanted. We finally purchased eight windows from a huge antique store. We shopped for three hours and rummaged through every single room. In the 1800’s the store was originally a boarding school. It is now jam packed with antiques on FOUR different levels. It is huge! We found eight large windows from a home built in the 1920’s. We purchased all eight of them for $96.00. We were pretty proud of our find. I will take pictures of Brian’s handy work when he’s finished. Hopefully he can make my shed at least somewhat resemble the one in the photo. :D
For an early Mother’s Day gift, Josh and Brian built me a sidewalk out of cobblestone that leads from my back patio to the grill area. It looks so awesome! I keep telling Josh that he is missing his calling as a landscaper. He has awesome ideas. Josh also bought me a beautiful angel statue that stands about 3-1/2 feet high. It is so pretty!
As far as my work goes, lots of things have been happening. Sadly we’ve had quite a larger turnover in staff. We’ve been working short handed and those remaining are worn out. The fact that we are going paperless and trying to learn the new electronic medical records system has caused many people to crack under pressure. Our office was already fast paced and nerve racked enough. Now it’s even worse! Of the ones quitting is the office manager. She and I have a really good work relationship and I will miss her terribly.
Some days I can do nothing more but shake my head and wonder why I’m there. On the other hand, I love the fast pace and enjoy trying to keep everything and everyone focused and on track! The bad part is, the hours are long and often I come home and collapse in front of the television. By the end of the day I have no energy left.
Since the office manager is leaving, I’ve been given the extra duty of hiring personnel. I also do the scheduling, which I’ve been doing for several months, but the interviewing for new staff is all new to me. I had sat in on several interviews but I didn’t have to ask any questions…until last week! It took stumbling through 2 or 3 interviews before I began to feel comfortable with my new position. I was so nervous at first!
Seventeen months ago I started at the bottom and quickly found myself in a coordinating/management position. I’m now asking myself why I tried to do so much. Sometimes I would rather just come in, do my job and leave.
As far as a health update on my pituitary tumor:
All looked well in my last MRI. Nothing has changed which is a good thing! The tumor is the same size it was last year. As long as the tumor is not growing rapidly I can hopefully buy some time. The idea of surgery scared me and several doctors have claimed that many people have pituitary tumors and never know it. As long as the tumor is not complicating my hormones or causing vision loss, they recommend I leave well enough alone…which is fine by me! I return in six months (to a year) for another MRI and a follow up with the endocrinologist.
Thank you to each of you for your continued support.
I love each of you and I cannot wait for the conference in Covington, KY. See everyone in July!!!
*Hugs
Jess
May 20th, 2006 marks mine and Brian’s 17th Wedding Anniversary!
Happy Anniversary Baby…I love you dearly.
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Sweet Kaity Bug,
Three short months from now will mark two years since you’ve been gone. I cannot fathom that almost two years has passed. Everything about you is so crystal clear. I love the spring because I know you will be sending many angel messages! I'm ready for a new sign. I haven’t had one in awhile. Happy spring baby girl…I hope you are helping plant the flowers and watching over all the MPS and ML babies in heaven.
Let me know that you are still watching over us.
I love you,
Mommy
Friday, June 16, 2006 10:17 PM CDT
Hello Friends!
As most of you can guess, when I’m not at work most of my free time has been spent with my flowers. It’s been over a month since I’ve been able to write but at least I returned with some photos!
Brian and I have been very busy, first with Mother’s Day and the cobblestone sidewalk he and Josh built, followed by our vacation and Memorial Day weekend! We decided not to travel while on vacation but to do work around the house which was in my case, tend to the flowers! In Brian's case, building our new shed. The first four days was nothing but rain so Brian began construction inside the garage! By the end of those four days he had all four walls complete! I killed time waiting for the sun by cleaning house and flower shopping with my girlfriend Donna.
Last Sunday, I don’t know what made me start surfing the internet to find out more about Kaity’s flowers in her Angel Garden, but I was so glad I spent time reading. During the Victorian era flowers were given “meaning” behind their names. For instance a red rose symbolized love. A black rose symbolized death…etc, etc. I was curious about Kaity’s flowers so I looked them up. I was pleasantly surprised by the meaning behind the flowers I had chosen for her garden…especially the Moonflower.
Verbena – planted around her fountain – means “Pray for Me.”
Her White August Lily – planted mainly because she passed in August- means “Purity, Majesty, and It’s heavenly to be with you.”
Solomon’s Seal – in the Bible, means “Peace.”
Purple Hyacinths – “I’m sorry” or “Sorrow”
Baby’s Breath – “Happiness, Everlasting Love, Pure in Heart”
Columbine – “Deserted Love”
Daisy – “Gentleness, Innocence, Loyal Love”
Day Lily – “Emblem of a Mother”
Fern – “Sincerity”
Lily of the Valley – “Purity, Humility, You’ve made my life complete.”
Pansy – “You occupy my thoughts.”
Phlox – “Sweet Dreams, Our souls are United.”
Astilbe – “I’ll be Waiting”
And last but not least…the one that made me cry the most…
Moonflower – “Separation”
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Dear Sweet Kaity,
Please watch over your Daddy this coming Sunday as I’m sure his heart will be heavy on Father’s Day.
I was so happy to read the meanings to many of the flowers in your garden. There were a lot of flowers listed that did not have special meanings, but I was so happy to read that was not the case with your flowers. As it turns out their meanings are as precious as you. I searched much of the day for the meaning behind a moonflower. I have heard moonflowers called Devil’s Apple and also a few other not so worthy names. I worried that the name would be something like the Petunia, which means I loathe you! I finally found a place that had it listed. There it was... Moonflower, “Separation.” I instantly began to cry because that is what we are...you and me...Separated. Separated as humans but not in spirit.
I miss you tonight sweet girl...
Mommy
Sunday, July 16, 2006 8:13 PM CDT
It’s hard to believe that an entire month has already passed since I last wrote. Where does time go? I started working and now there never seems to be enough time.
The shed is coming along slow but sure. Brian is not home long enough to give it the time it needs. He will be home Thursday and will be on vacation again! *Lucky Dog* Time to work on the shed? Notta! Next week will be spent digging up the backyard. One of the sewage pipes obviously has a hole in it because every time it stops up, roots are the culprit! A fun way to spend your vacation huh?
In eleven more days we will be going to Covington, Kentucky for The National MPS Society's annual conference. We are so excited! I can’t wait to see all the kids again. Hopefully we will return with a bunch of pictures! Since the conference is so close my sister Rebecca (and her family) are going this year. I can’t wait for them to meet the kids from the forum and finally put faces with all the names.
I’ve had a wonderful show of moonflowers this year. I don’t have near as many as last year but I think a lot of them were frozen through the winter. I have to remember that moonflowers are an annual and it’s a treat when they do come back on their own. This fall I’m covering all my moonflower beds with leaves and mulch. Hopefully a blanket will keep them warm.
Earlier this year I was disappointed when the moonflower seeds I mailed out to friends were not growing. Mine weren't growing inside either! They’ve always grown before, but not this year! My second attempt I soaked a bunch of Kaity’s seeds overnight and then planted them. No sprouts again! Aggravated that none of them were coming up, I dug a small hole and threw all the seeds in a corner of my flower bed. Now I have moonflowers everywhere!
Love and Hugs to each of you and I will be back to let everyone know how the conference went!
Jess
Thursday, August 10, 2006 6:51 PM CDT
Brian and I attended the National MPS Society’s annual conference in Covington, KY, July 27th- 30th.
We had a lot of fun with our good friends Allison (MPS I) and Zachie (ML II/III)! Jennifer and Jim (Allison’s parents) were attending their first conference. They asked us if we could watch Allison on Saturday while they attended the meetings. Of course we were absolutely thrilled with the offer!
Friday afternoon we went to Parky’s farm and later that evening we attended the MPS/ML forum party hosted by Barbara Pryor and Sharon Cochenour. We had a blast at the party and were very grateful to Barb and Sharon for hosting the event.
On Saturday, our day with Allision was spent swimming, eating at McDonald’s, visiting with Zachie in his hotel room, and then returning to our room to watch cartoons. It was wonderful to spend the afternoon watching T.V. and listen to Allison talk and giggle. My sister Rebecca and her entire family, along with Josh and Holly, all drove up from Indiana to meet Miss Allison. Josh had quite a bit of quality time with her and fell instantly in love. Allison thought Josh was pretty cute and acted bashful around him at first. It didn’t take Josh long to charm Miss Alli into conversation. ;)
Much fun was had by all and we are so grateful to the Restemayers for allowing our entire family to enjoy Allison’s company throughout the weekend. Since the conference was so close to August 9th, Kaitlynn’s second anniversary of angelhood, seeing all the children helped us through much of the emptiness we were feeling.
Big Hugs and Kisses to each of you,
Jessica (and the entire family)
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Dear Sweet Kaity,
Yesterday marked two years that you’ve been gone. It’s difficult to explain how I feel. The first few weeks of August are not fond memories and it rips my heart out to think about your last few weeks. I spoke to another Mom at the conference and I was relieved to hear that I was not the only person that carries the memory of their child's final weeks, days and hours around so heavily in their heart. Just like the other Mommy, it’s difficult for me to remember better times because the final week is still so vivid. My prayers now consist of, “God, please let me fall asleep quickly.” Nighttime is the worst for unwanted memories.
I waited for a sign yesterday but there was nothing. Lots of moonflowers and butterflies but I was secretly praying for more. The clock struck 4:47 and I lit a candle in your memory. I watched, I waited, I listened…yet there was nothing but silence.
It made my heart all the more heavy.
Later in the evening Mommy, Daddy and Aunt Rhonda sent some balloons to heaven. We watched them until they disappeared into the clouds. We sure hope you got them. We sent extra balloons for your good friends Ashton and Brookie!
Last week I found a bracelet that I wanted to buy in your memory, but I wanted to wait until the 9th to make my purchase. I had Daddy take me to town last night and I was so happy the bracelet was still there. It is a silver charm bracelet with pink beads and three charms that say, “Love”, “Daughter”, “Forever.”
That’s what I will do sweet Angel…Love my daughter forever.
I miss you,
Mommy
