Tuesday, April 14, 2015

One Month Out!

One-Month Post-Op!!! (Well, she was on the 11th!) I can’t believe we are a month out… time as flown by!
Things are going well, and continue to get better. Kaylie doesn’t need my help getting dressed, or after she uses the bathroom, but I still have to help her shower… she says she doesn’t feel steady bending/looking down to wash her body… and washing her own hair isn’t an option either. She still continues to wear the neck brace, but mostly in the car, out in public (sometimes she will take it off… in none crowded places), and when her neck gets tired. Example is her tutor was at our house and they were working on her school work, in about 45 minutes in she wanted to put her brace on… she doesn’t complain of pain, she says “it’s tired”.
The homebound situation is going well, and her school is completely supportive and understanding about everything. It’s really great to have a school this way for parents in these situations, as it takes a lot of stress off of it all.
PT is going great too. She still is going just once a week, and loves going! She says she feels “looser” when she goes. Kaylie is still a little stiff in the neck, and you can really see that in pictures like our Easter pics, or when she has the brace off. Her mobility is getting good… typically with cervical fusions of her nature (O-C2) you will loose 30% mobility, but since Kaylie has EDS (Ehler-Danlos Syndrome) the percentage is less, b/c that “extra” flexibility actually helps out in this area, even those EDS is the cause of her Retroflexed Odontoid Process (the need for the cervical fusion). Below is a video of her looking left and right and up and down. Looking up is a little hard too, her PT explained to me: since the rods are fused to her skull, it’s in a “fixed” area… so it will be limited.
video




She does look stiff in these photos, but part of me wonders  if what was
coming the next few days didn't play a role into it all. This is Easter morning, later
that late afternoon, she started not feeling well, and her head was hurting.
Then the next few days we had weather issues… so I think it was all weather related. 



I’m still currently looking for a Rheumatologist for her in the Texas area. I’m emailing a few, and talking to other patients for suggestions before making an appointment with any of them.
I’m also trying to find a better symptom tracker application/system. I think she has a lot of things that go on, that I need to keep better track of, that are not related to Chiari.

Her incision is looking great! I actually think the healing process this time around has been a lot quicker. Possibly due to she had steri strips last time. She does have a tiny bit of keloiding of her scar going on… but I honestly think it doesn’t look bad at all.

Things are going good!!


Friday, April 3, 2015

3 Weeks

Kaylie was 3 weeks post-op on Wednesday. Things are really good, slow… but good. I can't complain how well her incision is healing… it looks great!

Her 3 week pic looks a little irritated, but that's from the brace. She just got out of the bath that night, and had been wearing her brace all day. I should take the photos in the morning… b/c it looks better… kind of like her 2 week photo. I'm still having to help her bathe, get dress… her neck muscles are still very stiff, and they will be for awhile. She started physical therapy last week…. she loves it, she says she feels "loser" after she is done. We have a couple home exercises that we do between PT visits. I will write about those in another post soon. She also started her home bound program from school. Her teacher is Abby's Pre-K teacher from a few years ago. So, its nice to know the person that is at our house.
Pain wise… is good! She actually doesn't take a lot of meds, usually by the end of the day, she says her neck is tired… so i give her something… she still wears the brace a lot…
My only complaint is how tired she is. Fatigue has always been an issue with Kay…. and I think I use to blame it more on the headaches… but it does make me wonder. She sleeps 12 hours a night, in the morning it is so hard to get her out of bed… its a really big struggle. She tells me a lot she is tired too. I know she is only 3 weeks post op…. but I really don't think she should be this tired all the time…. and this happened a lot prior to surgery too. Something to watch.

Its been hard to get back into a routine for our house. But I think we are slowly getting there. All of everything that has gone on, as taken a toll on me too. I'm starting to feel very withdrawn from Facebook, chiari awareness… being involved with things socially for a good cause. I don't know if its I'm just emotionally & physically tired, or if I am wanting not to be so involved in things. I need time for me, my family… I think I'm still worrying about Kay a lot too.
Ive been gardening a lot lately… and it is SO nice. I feel like I'm away from the outside world.

On another note… Anytime I am out with Kay, she probably gets asked at least 3 to 4 times a day, "Oh, Honey…. What Happened?" It's kind of got annoying… to the point we are starting to come up with funny little off the wall stories. Then of course we tell people the truth. But its funny to watch people's expressions!
The first one Kay said… was we walked into the pharmacy and the clerk was all, "Did your brother beat you up?" (Mason was with us)… Kaylie turned around, and looked at me, then at the clerk and said, "Nope.. I fell off a unicorn." So nonchalant and everyone at the pharmacy started laughing. So,  later I will have to tell you our 25 top stories we tell people! LOL
Easter is this weekend… we are excited to spend it with our family, my parents, my grandparents, Aunt, my brother & his wife. We haven't really seen anyone since we have gotten back. It will be a good Sunday. We hope everyone has a wonderful & blessed Easter! xoxo