What a Week

Have I mentioned lately how glad I am to have my new job. Its flexibility this week is paying off in dividends.

So Monday all was well. Tuesday, Ky had two appointments. She had to go to a dental specialist at 7AM in downtown Atlanta which means we had to leave at 5:30. Ick! We arrived and our name was not on the list of patients to be seen. After the trouble we had to go through to get this appointment, I knew they were going to send us back home. They typically see patients with cleft palette, jaw problems, etc. I had to beg and plead to get Kyleigh seen. Well, fortunately our early morning paid off and they did see us. They want her two teeth that are next to her two front teeth to grow in before they do anything else. Then, they said they would try to put in a semi-permanent bridge. Sadly, none of this is going to do anything to prevent bone loss so eventually she's going to need a bone graft to replace the bone that she loses in her upper jaw. Then, they will be able to do implants when she is 18 years old or so. This whole dental thing is going to be a big issue for years to come.

So, after the dentists we had a 9AM neurologist appointment. We didn't arrive until 9:30 because the dentist was late seeing us. However, we waited for the neurologist until 11:15 so I guess the being late just meant we didn't have to wait so long. He has determined that her dystonia is actually more prevalent than her spasticity. This means that her primary diagnosis is no longer CP, but actually dystonia. He is treating her with medications in the Parkinson family. If we see enough improvement, then we will consider deep brain stimulation. Currently she is taking 12 mg of Artane a day. Our instructions are to titrate her up until she is taking 50 mg of Artane a day. This is a huge amount for anyone with normal muscle movement, but for her, hopefully, it will help to control her abnormal movements. More medication issues: her carbadopa/levadopa combination med that she has been taking is being discontinued. This normally isn't a big deal because she's just taking a generic version. However, she's allergic to the non-generic version because it has yellow dye in it. The generic version has blue dye which she's not allergic too so we've been hunting a pharmacist that can make this for us.

Anyhow, after all this nonsense on Tuesday and Kyleigh arrives at school 2 hours before it gets out but I had to drop her off because I had an appointment that afternoon. Wednesday, she was up all night coughing and gagging from sinus drainage and so we kept her home because we knew she would be too tired to work. Aaron stayed home with her this day because I had previously scheduled appointments. Then, Thursday she said she was ready to go back to school although we knew she was still feeling badly. Unfortunately, she had been to the clinic twice before 9AM and they called me. So I went and picked her up, took her to the pediatrician and found that she has a sinus infection (no surprise) and lymphadenopathy. Her lymph nodes actually got infected themselves from working overtime to fight the infection. She wasn't eating because her glands were swollen to the size of summer grapes. It's pitiful. Needless to say, we kept her home on Friday too and she's still pretty miserable despite the added four medications to her usual four that she takes three times a day. Uck!

Christine K.

MCATDT

What a wonderful weekend. I got the pleasure of spending some time with my mom. I saw some old friends at Homecoming and I played the trumpet at a Florida State football game. The only thing that could have made the weekend better would have been if FSU had won. Oh well. I am hopeful that they are improving and that hopefully next year will be better still.

It is a lot more tiring to do a 12 hour day at my age than it was when I was 20. However, it was amazing that it was not only possible, but exhilarating. I look forward to being able to go again next year and possibly taking Alison with me. By then, she will have been in band for over a year and maybe she'll be inspired by seeing the best band in the country.

Christine K.

Festivities

It has been a busy couple of days. Juliet Gordon Lowe (founder of Girl Scouts) had a birthday yesterday so our Girl Scout service unit had a birthday party for her. It consisted of all different sorts of fun. My favorite was the donut on a rope. The girls have to put their hand behind their back and then try to get the donut off the rope that's dangling in front of them. It is hilarious. They bobbed for apples and did Cindy Loo Hoo hair. They made goo and participated in costume contests (Kyleigh won 3rd prize for the Brownies) and made gross goodies (Alison won 1st place for the cadettes). A good time was had by all.

Then, we went to Hebron's fall festival. Alison jumped until her heart was content and Kyleigh played ring toss, bean bag throw, and various other carnival games. We had free hot dogs, popcorn and drinks which was nice and we got to spend some time with Papa.

Finally, tonight we went trick or treating. The girls had a wonderful time. I can't believe what a difference it is with Kyleigh and her chair. Last year at this time, Kyleigh drove her chair on her own to about 4 or 5 houses before she was done. Tonight, she drove the entire way. She was tiring out at the end, but she did so well. Alison was better behaved because she didn't have to spend her whole night waiting on Kyleigh so that was nice. Everyone commented on their costumes. Alison was a stingray and her costume was hand made by dad. It was amazing. Kyleigh was boo mama.

This week, the girls only have a four day school week because of the election on Tuesday when they will miss school.

I will be traveling to Maryland with my job for a few days to see another consultant at work.

All seems to be going fairly well.
Christine K.

End of 1st nine weeks

In our house, we have all As, Bs and only one C...and the C improved from a U at midterms. We are so proud of our smart girls. Alison is in all advanced classes and Kyleigh is in regular 2nd grade and expected to do the same work as everyone else. Just a proud mommy...had to share.

Crazy doctors

4:30 in the morning should be too early for anyone to be awake except morning show hosts. What kind of doctor thinks being at the hospital by 6AM is a good idea? Ugh!

So, Ky had her botox injections this morning which means she had a day of pain and exhaustion. We didn't even do our usual Friday night celebration with the Youngs.

Hopefully, she'll sleep in today and feel better. She slept through the night so that's a good sign.

The girls are doing well in general. Ky has taken another leap with her communication device. She was using 60 icons on the first page. Now she's using 84 icons on the first page. This means that she needs to make less hits to get to the same word and that she has more words to choose from. She is very excited about this. I even added Selena Gomez to her device which makes her very happy so now she can ask for her CD.

Alison is making all As and Bs in her advanced classes. She is still liking middle school, but is glad that this is a long weekend. The teachers are being furloughed again. One more reason why I'm glad I got out of teaching.

Next week is my shadowing week so I'll accompany another consultant who has been working in my area. We will wrap up some of her appointments here and I will get a chance to see her at work. Then they will set me loose to do my thing. I'm very excited and look forward to being on my own.

Christine K.

Missing Teeth

Usually, missing teeth is a sign of growing up....in our house, it's a sign of Kyleigh doing what Kyleigh does best. When Kyleigh was 6, she knocked out her front teeth trying to manuever up the ramp to our house in her power chair. Now that she's 8, she has...or had her permanent front teeth. This time she was gearing up for a soccer game in the basement. Before the soccer ball had even arrived, she was playing tag. She "ran" past a net swing. Her hand got stuck in the swing. The errant hand pulled the swing over her face. The swing got stuck on her front teeth and pulled them out at the roots. Ugh!

So, fortunately I have a friend who was a dental hygenist. She helped to reimplant the teeth and held them in all the way to the hospital and then for 2 hours waiting at the hospital and then on the way to the next hospital and then for 2 more hours waiting at that hospital. Finally, we saw a dentist who tried to stabalize the teeth but with no luck. Needless to say, it's a week later and we still have no answers.

I'll try to keep everyone posted on what the plan is. Right now, we're just letting her gums heal and hoping that the teeth next to the front teeth erupt soon so that there's something to attach the partials to.

Christine K.

Real communities

I was so excited today to meet with a group of friends to discuss real communities: a place where people can work, live and interact within walking distance of the things that they need such as a grocery store, post office, park, doctor's offices, etc. It is a place where neighbors look out for each other; where old and young alike can live together and take care of each other; where people with disabilities can coexist in harmony because they are valued members of society. It is an exciting prospect and I look forward to creating a real community here with the hopes that my daughter can be part of it one day...and perhaps me too.
Christine K.

PATH

I was privileged this week to be invited to a PATH. This is a way to help someone plan their life. A group of people along with the individual help them to dream big. Then, the dream is broken down into small and achievable steps. I learned about a young man who wants nothing more than to be with his friends. He dreams about a lot of jobs, but wants to experience other jobs. It was my joy to be able to share my new job with someone else who is just beginning to search for a job. As I experience this new journey, I will invite this young man along with me so he can experience it as well. Perhaps in doing this, he will find a true calling.

In fact, it was my own PATH that led me to my search for my job. Thus, my journey has made a full circle. I had a PATH that led me to a new job and new experiences. In turn, I will have the chance to help someone else with their PATH. It is amazing to take part in this and I look forward to seeing what will come next.
Christine K.

Anniversary

Today it has been exactly 14 years since I married the person who truly does make me a better person. He is my other half, my partner, my friend and my companion. I leap into the waters of life. He dips his toes. I say exactly what I think. He measures his words. I am energetic and spunky. He is laid back and calm. Without each other, we would truly not be as good as we are together.

I am so thankful for my husband and I look forward to 14 more happy years together. I could not be more blessed. He is the love of my life.
Christine K.

Job news

Well, it's official. I have been offered the job and am accepting it. Even better, my current employer is going to allow me to step gracefully out of my contract. My last day at my old job will be September 15th. My first day at my new job will be September 16th . I could not be more pleased.

It has been a week of excitement. My brother just purchased and became a franchise owner of a convenient store. I traveled to Florida for the ribbon cutting ceremony and was able to see his store. It was a proud, although extremely nervous, moment for him.

Additionally, I was able to see family that I have not visited with in a while.

Preplanning starts for teachers on Wednesday. Luckily, I will be able to make sure my students get a good start and with any luck my current employers will find a replacement before September 15th. I wish them well.
Christine K.

Job Part II

So, the plot thickens. The HR department at the "new job" has not been able to get in touch with any of my references because they're all on vacation. That's the difficulty with teachers...they all go away for the summer. Anyhow, I sent them three new references yesterday with summer contact information. Hopefully this will help.

At my current job, there has been an application! This is miraculous in and of itself. Teachers in my line of work are *very* hard to come by and this makes me feel like this new job is meant to be. The applicant is certified in braille and instruction for the visually impaired. On paper, she sounds like an excellent candidate. I hope this is true in actuality.

Time will tell. School starts in two weeks so I'm hoping to know something before preplanning. I'll keep you guys posted. Thanks for the well wishes!
Christine K.

New job possibilities

So, it has been a very exciting week. I have been looking for a new job for a while which is why I have been attending Kaplan. I was hoping to find a job with more flexibility and where I could work from home. Well, on a whim, I applied for a job with a company that makes communication devices. They have decided that they need a representative in the area where I live. I was sure that they would not consider me because I'm not a speech therapist. Much to my surprise, they did consider me. I spoke with a manager on the phone. Then, I had the opportunity to meet when I was visiting family in Pennsylvania this week. The one little problem is that I have a contract with the school district. If they can find a replacement for me, then they will let me go. If they can't, they won't. I look forward to seeing what will happen on this journey for me. This is truly my dream job! I would have the opportunity to share the excitement of developing speech and language for those who may not normally have that opportunity. Keep your fingers crossed with me!
Christine K.

4th of July

I feel so fortunate to be a part of this country where we really are free. On the 4th of July, our family spent the day with my friend Radha, who has moved here from India. She has three beautiful girls. Her middle child happens to have Down syndrome and she is the reason we have met. We took a class in 2006 to learn about how to become better advocates for our children with special needs. We have stayed in touch since then and have spent the last two Independence Days together. This year, we were able to go swimming, eat some India food and American food too! Then, we lit some fireworks. Our girls thoroughly enjoy each other's company which makes it nice for the adults. I feel so lucky to have friends like this where our children are free to play together and where we can truly get to know one another.

There are countries where children with disabilities are hidden away because the parents are afraid they might be killed. Although America still has a long way to go with acceptance, we have come a long way.
Christine K.

Camp Continued

Well, to my utter surprise, my dearest daughter has been quite prolific with her writing while away. So far, I have received a letter every day that she has been away and I'm so glad to see her love of writing (and her love for her parents) has not waned. She is having a great time. I saw some pictures of her getting "Who" hair. They are doing a Dr. Seuss themed week. They've had some night swims which she really liked. She's also made a friend with a little girl who doesn't have other friends, according to my daughter. Her favorite activity is still the lake trampoline, but she has had fun with many other things as well. I look forward to seeing her on Friday, but I'm glad that all is well.

Also, for those of you praying for my second cousin (he had the preemie baby born with Down's Syndrome), he is doing well and improving daily. He is now up to 2 lbs and 2 oz. He is having some heart issues, but this is common for children with Down's. Continue to keep him in your prayers if you so choose.
Christine K.

Camp

At moments like these, I feel both overjoyed and saddened. I dropped my eldest off at camp today. She no longer needs me to stay and fix her bed or wait until she connects with a friend or two. There are no more kisses good-bye, but she did throw over her shoulder an "I love you" in return to my own. My heart swells with pride that she no longer needs me for so many things, but it is a mixed emotion indeed. I cannot wait to hear the tales she will tell and the adventures she will take this week on her own. I hope she will have fun, meet new people and learn new and exciting things. I will let you know on Friday.
Christine K.

New and Exciting

All kinds of new things are happening in our life right now. After our trip to communication device camp (Jabberjaw) and then a trip to Seaworld, we are now home and recuperating. While home, I have been working to complete our home study in preparation for a possible adoption. I called a company in California today to tell them what we were looking for and they told us that they have a child now who fits our description! There is a 2-year-old little girl from Russia that is absolutely beautiful. It is exciting to think that this could be the final addition to our family. I look forward to this journey, no matter what the future holds and hope that you will follow along with us.
Christine K.

Seaworld

We arrived the day before yesterday in Florida and it is a special kind of hot here. Temperatures reached 100 degrees and it felt that hot and more. We visited SeaWorld yesterday during the day and we plan to go again today, during the night. The girls loved it and had a wonderful time seeing the sea creatures. My eldest's favorite was petting the sting rays. My youngest enjoyed viewing the beluga whales. Personally, I enjoyed the shows and am looking forward to riding the coasters! Since we're going at night today, it should be fun to see some different shows and possibly enjoy the fireworks.

An additional note: my cousin and his wife recently had a baby, very early (26 weeks) and obviously is facing some challenges. If you feel so inclined, please keep this little one in your prayers and thoughts.
Christine K.

Week at Camp

So, I'm finishing out a week at camp Jabberjaw in Mississippi. This is a family camp where communication device users attend in order to have fun and learn more about their devices. We have been attending for three years and it has always been great fun for us. This year it was even more exciting. As some of you know, my youngest uses a communication device and has does so via scanning. Basically this means that there is a box that moves automatically through the selections and she clicks a switch when the box is on the right choice for what she wants to say. At camp this year, though, we discovered eye gazing. This is where she merely has to look at the selection she wants in order to activate the voice of her device. It is amazing how quickly she learned this and how easily she was able to make her selections. She could say 10 things in the time it was taking her to say 1 before. We are so excited about this possibility and are hopeful that insurance will be helpful in our latest quest to find technology that can assist our daughter.

Reasons for Being

One of the main purposes in my life, at this juncture, is to help to create a world where all people are welcome. What does this mean? First of all, it means that locations should be physically accessible to everyone. Secondly, it means that people should feel welcome when entering a location. Finally, people should want to return if they are truly made to feel welcome. I am starting this with me, in my home, and working outward. I would love to hear your thoughts about how to make places more welcoming for all people.