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.