Courage for Kennedy – Journal

February 18, 2008

Feeling Better

Category: General,Treatment – Melenie – 12:31 pm

It’s true…I am feeling better. I’m still not happy about the situation, but I am not feeling super angry or like having a pity party anymore. It’s time to pick up the pieces and move forward. Ultimately, my goal is to raise Kennedy in to the very best woman she can be…whatever that is. I want to take her strengths and help her to use them to the best of their ability and to help compensate her weaknesses as much as possible. I also want to give her tools to navigate through this world and teach her to be able to ask for what she needs and wants in an effective manner. Much the same things every mother wants for her child. That is my plan. So, we will be using the resources available (her language, occupational and physical therapists, Mrs. Darling (her tutor) and I will be reading, reading, reading and
researching, researching, researching) and I am working on some things (tools) to implement at home to encourage and teach her to be as self sufficient as possible.

I forgot to mention about her last appointment that Kennedy had her first blood draw without her port. It could have gone better. We numbed both arms in the crook of her elbow. It took several minutes to decide which arm to use (which had the more prominent vein) and they attempted the right one. Bad choice. It did not go well. They were unable to get the needle in enough to get blood. They pulled it out slightly, pushed it further in and dug around in her arm to no avail. Not good at all! Kennedy just started screaming her head off and crying and asking us to put her port back in! To her credit though, as angry, scared and upset as she was…she held very still. When it became obvious that it was not working, they pulled the needle out and bandaged her arm. She was still crying but went back to eating her Valentine’s candy from Adonna. Until they returned. She had no idea that they were not done…to her utter horror they wanted to try the other arm. Another nurse made this attempt and it went right in with the problems what so ever…didn’t even have to go in very deep…drew blood and they were all done and Kennedy (although crying) held totally still and didn’t feel a thing. Thank heaven for that! I don’t think either of us could have endured another failed attempt. But all is well now.

Overall, not a good day. We also got her OT and SLT evaluations back on Friday. It was what we expected but that doesn’t make it any easier to handle. Let me break down the results in the easiest way possible starting with language and the good news first:

In expressive vocabulary she scored at the 8 year old level! Woo Hoo! She could use tenses of verbs properly and was able to express herself very well.

In word class-expressive she scored at the 7 year 6 month level…almost right on target! Again, we were very happy here.

In word class-receptive she scored very nicely at 7 years 11 months.

In her ability to structure words, she scored at 6 years 11 months…really only about 5 months behind…not bad.

Her ability to formulate sentences, she scored at 6 years 4 months…ok, a year behind but still doing okay here.

Her ability to recall sentences was a little lower at 5 years 11 months but that was expected.

Finally, her ability to comprehend concepts and directions…5 years 3 months…over 2 years behind. This was expected and did not come as a surprise but none the less, not exactly what we would like for her.

Kennedy’s ability to identify pictures and use correct terms (expressive language) has improved significantly from before, so that is fantastic. We have been working with Kennedy by giving her the proper names for things and sometimes it is hard for her to recall the specific word (she called broccoli celery the other day) she always names with in the catagory and often self corrects. She is getting better at accessing that file in her brain.

We have come up with some workable goals and were approved for 24 weeks of weekly sessions with her therapist. Thank heaven for good insurance.

Now, for occupational therapy…not quite as well here. Again, I will give the catagory and then the age equivelancy.

For fine motor precision (activities such as drawing, folding and cutting), Kennedy scored between 5 years 2 months and 5 years 3 months…over 2 years behind (she is 7 years 4 months now).

For fine motor integration (activities including the reproduction of drawings and geometric shapes) she was in the age range of 5 years 8 months to 5 years 9 months…better.

For manual dexterity (reaching, grasping and bimanual coordination with small objects) she scored “below 4 years.” The test is for 4 years to 21 years and if your score is too low, it will only say “below 4 years.” How far? We are not sure…perhaps as much as the 3 year old range. Hmmm…that’s over 3 years behind. It makes perfect sense why buttons, zippers, snaps, shoe laces (although she can tie), brushing her teeth, using utensils, brushing her hair, writing, etc. can be difficult tasks for her.

Finally on this one, upper limb coordination…well, she scored in the 3rd percentile but it wasn’t too terrible. She was about 5 years 6 months to 5 years 7 months. Again, this was not a surprise to us.

What is so frustrating for us is that this is a child who was on time or advanced developmentally prior to treatment. She had wonderful verbal skills and coordination. Her brother was even teaching her how to play songs on the piano…an impossible task now. She had radiation at 5 years 5 months and as you can see…she really got stuck there. She had over 30 rounds of intrathecal (in her spinal fluid…think sometimes weekly and at the very least quarterly spinal taps with chemo injected directly in to her spinal fluid) chemotherapy between the ages of 4 years 7 months and 6 years 10 months during which time period she also was heavily sedated often and would sometimes spend up to 14 days in a drug induced coma state. She also lost her abilty to walk and talk at one point. Nearly every skill she has had to be relearned at some point…sometimes more than once. None of these scores surprise us but we are bothered by them.

So, we have goals we are working towards. She is making steady improvement (sometimes slow) all the time and is a very happy child. We have the most awesome therapy team who are willing to go the extra mile for us and always willing to research and come up with new ideas…we couldn’t ask for more.

Let’s see…this week Kennedy has her PT eval and I know Amy will have a plan for her legs and feet…that is encouraging.

Optimism is the foundation of courage. ~Nicholas Murray Butler

An optimist is the human personification of spring. ~Susan J. Bissonette

and finally…

A pessimist is one who makes difficulties of his opportunities and an optimist is one who makes opportunities of his difficulties. ~Harry Truman


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