Archive for the ‘Charcot-Marie-Tooth’ Category

I told you about my sister coming from California to take me to my surgery, remember?  We she oh about 40 or less miles away and she hit a deer. She is fine and wasn’t hurt and her dogs are fine too. Her car……..not so much. She won’t know officially until Monday because of the holiday weekend, but it seems like the car will be totalled. 

I put an emergency call to BFF C and asked if she could take me to my surgery and stay till Friday when I am to be released.  She has 4 kiddos so I didn’t know if it was going to be possible.  She made some phone calls got everything worked out and we were on our way. .

I was so nervous this time and it was nice to go away and spend time with her. We ate a Jack in the Box and went to Michaels Craft store and also to Ben Franklins Craft store. We touched all of the scrapbook stuff and all of the yarns and accessories…we don’t have these stores here at home so we had to make sure we saw everything.

The surgery went well and I haven’t had too much pain/discomfort. The  doctor said that when he cut the lower leg tendon then my toes on that foot sort of crunched up so he decided to cut those tendons as well.  When I started to come out of anesthesia my toes were bothering me the most. They felt like they were being squished by the bandages. I woke up to a walking boot instead of a cast and didn’t understand what the dr. was thinking. When I finally got to my room BFF C told me that dr. had clipped me toes too. After the bandages were adjusted my piggy toes were much better : )

I hope to get some pics up of sisters’ car and will keep you posted on everything.

Thanks all



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So to begin where I left off… I had a complete 3 year old fit and though I didn’t feel totally better, I felt justified of sorts.

My fit was due to two contractors/landscapers that did NOT turn in their estimates as agreed. They had been asked to give estimates regarding having our backyard leveled out to accommodate Miss T and her love of climbing and being free to run of sorts. Miss T was given a opportunity to apply to a grant to have this done. Well they assured me that all would be well with the timing and they could/would have all info faxed to our case manager….. WELL that didn’t happen on the morning of expected turning in of said application!!! One of them finally did and so at least we had one for the committee to look at. We are still waiting for news…

Miss T’s sedated ear cleaning and possible tubes went well 🙂 She started with a cold and slight fever the night before, but she didn’t have a fever the morning of and her lungs were clear so we continued as planned. She did very well with the anesthesia and coming out of it. She actually did the best she had before. The dr. ended up placing one tube in her left ear and preforming a myringotomy on the right. All was well and her cold cleared after a week or so.

My AFO– I finally got my Ankle Foot Orthotic. I had totally pictured a scenario like Cinderella and the glass slipper 😉 Well that so DID NOT happen. It was uncomfortable and hot and made my toes crunch up more(if that was even possible). So about three weeks out now and I am getting used to it and actually don’t mind it as much 😉 I do have a couple spots that I need to address which I think is expected. All is well there 🙂

Miss T’s Sedated ABR–(hearing test) We had to go to Portland to Dornbecher Children’s Hospital. I know I have mentioned that I sssooooo don’t like going there 😦 I just don’t have good memories… anyway we got there early :} I was trying to plan for traffic and weather but I didn’t plan for No traffic and Good weather…. So we ( me, Nana, and Miss T) the “husband” had to work… Miss T so did not like being there. She wouldn’t get down on the floor and play with all or any of the fun things they had around. She only stayed in one of our laps. She ended up have the Versed nose spray to get her calm enough so they could start her IV. It was SO much better then last time when the had us help hold her down with the “mask” on for her to go out… I made sure I let them know I did NOT want to be a part of that again! She did well and her test came back “NORMAL HEARING”!!!!! Hopefully this will now get everyone on the same page and they will quit bugging me about this. As I have said before “I do think she hears, I don’t think she is a good listener” Hello she is a toddler and she has a teenage sister so she has been learning from the best on NOT listening or at least “Selective Listening”.
I know you know what I’m talking about 😉  ((EDIT: I just found out yesterday that this test is available in Eugene which is 3hours closer then Portland |:{   can you say annoyed! ugh!

My next surgery date– Finally!!! I have scheduled for July 2… happy 4th :}. Thats ok I’m not really a firework kind of girl… Ihave never really liked them. Too Scary for me.

Oh I almost forgot. We are going to the Down Syndrome Convention in Sacramento, Ca. I am very excited!!! I was able to get a grant from our Early Intervention Program to pay for registration and also a gas allowance.  We hope to meet up with other family’s we have met online and have lots of  fun!!

You know with all of these grants I/We have been given lately maybe I should think about going into Grant Writing???  Who knows maybe that is my thing. Oh but wait I am good at the filling in the blanks part not the creating of the grant…LOL It was a thought. 😉

So I think I have touched on almost everything. My camera has been acting up so I don’t keep it as handy, but I do have some pics to share soon.


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Is it wrong that I am actually enjoying myself. I really feel quite GOOD! I had a tiny bit of a hard time staying awake when I first got to recovery. I am a serious light weight when it comes to heavy meds. You know like Morphine…. OH YEAH! I also had the “itchiness”, got some benedryl and went back to sleep of course 😉

There was a elderly lady in the bed next to me and she was soooo sad. She kept asking for help for her pain and there were a lot of nurses around her trying to help and get her calm. She was just so confused, hurting and sad. She also kept asking for “Roger”….Roger are you here? Are you still here Roger? Come to find out Roger is her doctor. I just wanted to HUG her 😦 Instead I kept praying for her 🙂

I have more to share but I’m gonna lay down… Thanks for all the good thoughts 🙂

Oh ~~~~ This is for Miss G ~~ I LOVE YOU TO THE MOON AND BACK!!! Thank you for all of your help with MiMi and your prayers. MMMWWWAAAAHHHH!!! OOOOOOOO BIG HUGS!!!


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So I am getting ready for the big surgery. I leave in the morning to go to Eugene/Springfield area to go for my pre-op stuff. I don’t know what time surgery starts on Thursday so will have to update when I get home on Friday. I want to do a before, during and after type photos so those will coming up.

As excited as I am to get this going forward, I must admit I am a wee bit nervous. I have NEVER had a surgery before! I don’t count Miss Ts’                C-section 😉  I got something out of that besides I was in labor for days ( well it seemed that way)before they took her.

I think I am more nervous of the 6 weeks of “recovery” afterwards. I didn’t have any issues or problems with my incision. Granted I was just bit preoccupied with all of Miss Ts’ exciting adventure of her first weeks.

Plus I am going to be gone from my girlie’s 😦  I haven’t been away from them both at the same time. I know that seems whiner baby, but it is the truth.  I will miss them lots and lots.  I am very comforted in knowing that they will be cozy at home with Nana(my mom) and really will only miss me at meal time and bed time. I  do have my specialties I guess 😉 

Hey if you think about it would you keep us in your prayers thanks bunches. Anyway update in a few days 🙂


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