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Monday, February 14, 2011

Tourette's, Glaucoma and a Tonsillectomy


Life, as usual, has been busy. Although, I have been taking time to process the news of Luke's new diagnosis'. For whatever reason, I wasn't expecting a diagnosis of Tourette's the day we went to the pediatric neurologist. But there it was "Tourette Syndrome", seemingly thrown into my face quick and painful. The worst of the news was that there wasn't anything that they were going to do to help Luke (as the tics are not severe enough). The doctors words were, "you are just going to have to help him learn how to deal with it." "Deal with it"?!? My head has been swarming with all sorts of things, but most of my processing has been put on the back burner, as I had my tonsils burned out of my throat last Monday, in a process that has render me helpless and useless to my family, especially my 10 month old, who won't even let me rock her to sleep now.
The glaucoma diagnosis came 4 days after the Tourette diagnosis. His eye pressures are rising and he scored below average on his field vision test. Next appointment in 6 weeks, not 3 months. The new game plan is to treat with eye drops to lower the pressures. Luke HATES eye drops. Crying and pleading with me not to put drops in. How do you explain to your 7 year old that if you don't put the drops in that you may lose your eyesight? I tried to "ham it up" telling him that the eye drops were super secret special drops that gave him "super hero powers". He liked the pretending, but still screamed and protested when the time actually came for the drops to be inserted. Ugh...my heart breaks for him. School is difficult and kids are mean. Unfortunately he has a tic right now that cannot be hidden. He is being reevaluated for a new IEP through our school district. I am not certain what is going to come up but it will help me understand how to help him more effectively. I long for his little heart and soul to be protected.

Last Monday, I bid farewell to my tonsils, who I will not miss in the least. The procedure went well and was short. I was still extremely scared and cried in the operating room. I know, big baby I am. The recovery has been long and painful. The pain can radiate at different levels. At some points my throat has felt like shards of glass have cut it up. Fun. Not. I am on my second bottle of liquid Vicodin. The pain has been a little better today, but I am still in pain. The doctor said the back sides of my tonsils were covered with infection and puss. Nice. I guess that explains why I have been in so much pain off and on for the last six months.



Grace is doing well. My heart has hurt for her too as the place she holds in the family is one of the most difficult. I worry about her not getting enough or pushed aside because her needs are not as emergent as Luke's and the baby's. I have had some time to really think about things and there is one decision I must make for Grace so that I know that she is getting the best. She loves ballet and tap. She is practicing for a Showcase in the end of June. When I am completely healed I want to take her to see the movie Tangled.



Bella is mad at me because I haven't picked her up in a week. I would be mad if I were her too. Ugh..I just can't wait for all the craziness to subside and life to continue on. It also would be nice to eat something crunchy again. Just saying.

3 comments:

Logan and Jack's Mommy said...

Good to hear from you again. But so sorry to hear that things have not been going so well. I hope that you feel better soon and can get your mind around some of the things going on with Luke.

Penelope said...

Wow! I know that all of this can be so overwhelming! I am praying for you and your family.

Carissa said...

Thank you for your prayers and for your support. It is comforting for me to know that people care and are praying. Thank you.

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