3 Years/4 Months

Three years ago on this day we were facing Kaylie's first brain surgery. I remember those days so well. The fear, worry, crying moments, happy moments, even moments of looking at other patients thinking to myself, "I hope we never have to deal with that…" or "This is it… we are good now." Now we are 4 months out (almost 5) from her 2nd surgery.
As I look back on everything, Im still happy with our choices we have made, the doctors we have chosen to care for her, the lessons I have learned about these conditions, and others as patients or caregivers.
Kaylie starts back to school little less than a month. She is very excited to go back, and to see all her friends. And as she will continue to still heal, I will always worry a little about her at school, but I am learning to let go. She knows what she can and can't do, and I have to trust in that as she gets older.
She has been riding her bike again, roller skating in the house, being a normal child again. PT has even gone down to once, every 2 to 3 weeks. It's time to get back into a normal routine.

Wow, from the first time we met with Dr. Rekate, to the time we were meeting him again
to talk about her fusion surgery…. where has the time gone. 

Change… In Every Way!

We past 3 months post-op…. and will soon be 4 months post-op on the 11th!!! I seriously couldn't ask for anything better at this time!! Sorry for no 3 month post-op update… but to say the least, we have been living life… for us, not chiari. And this is a permanent change.
As of a 4 month post op update, she is doing great! And as you can see, healing quite nicely! We have also just dropped her PT down to every 3 weeks. She was measured today at PT, and her range of motion has gone from 10 to 30/40. Thats HUGE improvement!! Her PT guy does mostly cranial sacral massage/technique.

 School ended, summer began with lots of rain… I mean, lots!! We have had some flooding in our area… our backyard is really big, so it was never got close to the house… and after this first flood in the pics below, the kids never played in it again… I was too worried about mosquitos.

We also started a garden, mostly seeds planted. It took awhile to get itself started due to all the rain, but has you can see… it is thriving now!! The kids are excited about all the veggies that are blooming.

When 3 months came up in early June, Kaylie was due for a CT scan. We had it done here locally, then got the CD and sent it to Dr Rekate & Dr. Insinga. Kaylie did great during her CT, no sedation needed… but CTs are very short… nothing like MRIs.

In the CT pics above, the one is 2 days before surgery. Then the other two are her 3 month post op… its hard to see the change, and to the everyday person, your pretty much looking at hardware.

Kaylie wanted to send the doctors some cards, she is so thankful to both, but to Dr Rekate especially.  After they received the CD, they reviewed it, along with the report that I emailed them a few days later. A Skype appointment was set, which was last week. It went VERY well. Everything looks great, and in place. She hasn't had but maybe a handful of headaches since the surgery. Which is Amazing!! She is happy, and herself. She is still in PT, and probably will continue that for awhile. She is still healing. On the CT there was a small pseudomeningocele formation. This is spinal fluid (kind of built up), he said over the spinal cord area of where her surgery was at, it just needs more time to heal. He is very pleased at her healing as well, and how her scar looks. And we will see him a year post op, unless something comes up!

We celebrated "great" CT results with Snow Cones!

Cavity Free!!!

Kaylie also had her first dentist appointment since her fusion surgery. I was a little nervous about this appointment. I was scared about her being able to sit through it, having her head back…. but as soon as we walked in, that was the least of my concern! Im so thankful for the great dentist we have… they are always up to date on the kids medical history, and whats going on with them. As soon as Dr Guthrie, from Small World Pediatric Dentistry in OKC heard Kay had a fusion… he stopped and contacted Dr Rekate immediately. He wanted to make sure Kaylie didn't need to have antibiotics due to having hardware put in, prior to the dental exam/cleaning. (I had never thought about this before!) None was needed and Dr Rekate just told him not to hyperextend her neck. Everything went perfect, and this mama was happy!!!

We then headed to Dallas for a Rheumatology appointment. That appointment went great, the doctor we saw was great too, and they decided to test Kaylie for a few more things. Those results have come back normal, but the Rheum doctor told me to not always focus on the bloodwork, that things can come back normal… just not be showing up yet. But for now… things are good… so we are leaving it at that. We won't see her again, unless symptoms flare up more. One concern she had about Kaylie's EDS is her ankles, I guess they are "rolling" pretty bad… she suggested that Kaylie wear tennis shoes more often with special inserts to help strengthen and stabilize her ankles better.

Just the girls went down to Dallas.

Waiting for the doctor...

The other fun summer things we have done, is that we built a Lemonade Stand out of used wood pallets. Well, I built it, the girls helped paint it…. that was a little bit of a mess!

A couple weeks before the 4th of July, we got a new puppy!! Meet "Okie"! He is a chihuahua, you can't see his body below, but his body looks like a cow, spotted! His ears haven't come up yet, he still has a few more months for that to happen.

Coco, our other Chi, just loves him. They play all day, or at least until Okie zonks out!
Our 4th of July was very low key… we did the neighborhood thing, then went swimming, then saw a local fireworks show. It was nice, and relaxing.

2 Months Post-Op… well, a couple days ago!

2 Months Post-Op!!! It's going by fast, which is a good thing. Each day brings something easier or just a little bit better. And… more fused! The goal here. Kaylie is doing great! She is no longer on pain meds, really hasn't been for awhile. Doesn't wear her neck brace at home that much… only if she has had a "long" day or her neck becomes really tired. She does still use it when we are in the car. PT is still going well. Her mobility is really coming a long. Her incision is looking good too.

School work is going well, we are actually turning in all her work and supplies soon, and the year is over for her! Their last day is the 22nd, so it will be nice to have them at home.
We have had a lot of tornado weather in our area…. it's that time of the year. Kaylie has done very well, with it all. She hasn't had any headaches with any of the big storms… its only happens when we have a big front come through…. like it goes from hot to cold, dropping about 20 degrees.
Storm wise, we had a little damage…. nothing too big, a tree landed on one side of our home, but it is very minor damage compared to what could have happened.

In early June Kaylie will be seeing a Rheumatology doctor at Dallas Children's.

As for the family, we are all doing well, looking forward to the summer and nice weather. We have planted a vegetable garden recently, and the kids are really enjoying that… so far just planting seeds, and watching the sprouts pop up.
Myself as a parent, caregiver, and advocate…. I have really become distant from a lot of things…. A lot of emotions have gone about…. I'm not sure if that's b/c I'm realizing that this is a never-ending journey… which I have always "known" that…. or having Kaylie home day in and out, all the homework, PT, doctor appoints here and there….. I'm just physically drained. With having time to myself recently and just to focus on our family… its kind of had me do a lot of thinking.
The other night, Dateline was on…. it was on Tom Brokaw's journey with cancer. And all though it was about cancer…. it told our story. Trying to get our heads around pain levels, finding the right doctors, even if that means traveling, how you feel your life has done a 180, how as a caregiver…. I'm at my breaking point right now. It was an amazing episode, and if you missed it… I highly suggest you watch it…. you don't have to have cancer…. but you will relate to hit if you or a loved one has a chronic illness. Dateline Episode.

Hope

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.

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!!

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

All In A Week….

It amazes me how fast time flies. First, We are back home in Oklahoma now…. and Kaylie is doing good!!

Last Monday, she was discharged from the hospital. Dr Rekate came in that morning and was so happy with how Sunday was for her. We headed back to RMH, to rest & relax.

Good Bye Hospital!!!

Her friend Nic, was discharged the same day!
He also has Chiari & some related conditions. 

We played LOTS of games…. PS ~ I despise Uno now! 

….and drank hot chocolate… and more games!

Therapy Dog Nights!!

On that following Thursday we went for our follow up appointment with both doctors. They were happy with her progress, talked about physical therapy, and cleared her to travel home!

Waiting to see the doctor! Why Yes! That is an ASAP brochure
in the back ground!!! lol www.ASAP.org

Friday came, and so did a snow storm! We woke up early that morning, packed things up, checked out…. which by the way…. THANK YOU to the anonymous person who paid for our stay at RMH…. it was much appreciated! We left RMH, headed to Ben's dad's house in Philly. We stayed the night, then got up really early Saturday morning to fly home!!

Next Stop…. Oklahoma!!!

The first flight was really rough…. she got very sick on the plane, we think it was due to the pressure changes, when we got to our next flight she fell asleep before we took off, and didn't wake up till it was time to walk off the plane. Saturday when we got home… we were so happy to see Abby & Mason, and the rest of our family…. so good to be home! Kaylie laid in bed most the day… she was very tired from all the traveling.

2nd flight… trying to recover from the first. 

Kaylie wanted me to share this video with everyone…. she did it while at the Ronald McDonald House.

Today was a good day…. hung around the house… this coming week should be relaxing. We see her pediatrician on Tuesday, and hoping to get her PT set up for the last week in March. She is doing well pain wise…. doesn't really need a lot of pain meds… she is actually doing really well. When she does "too" much is when things start to bother her. I keep telling her to slow down, take it easy… but you know how 8 years old are! ;)

And like last time, I will post her incision pics. I was really glad I did this last time, and that I had posted her recovery last time… I was able to compare things, and how she is doing.

The photos are marked, first one included her drain that was in place.
This time we can see the redness, and the scabs… b/c last time she had steri strips.
She did not have steri strips this time due to the drain, and the wanted it to air out
and be able to see it as it started healing. Her incision pics from last surgery
are under "About Kaylie" tab.

A Small Difference Goes A Long Way….

WOW! Yikes! I always reread my last post to see where I leave off at…. I was in a dark place when I wrote that last one.

So much has gone on since… and of course in my fashionable writing skills Im going to copy/paste from FB!! lol


March 14th - Morning/Afternoon Update (Post-Op Day 3) - Last night was a good night, pain was controlled even better (after having a talk with her and a little toy bribing)… she wasn't telling the nurses her pain level, b/c she was not liking them flushing the IV before starting the pain med. (There are no needles involved, just her being scared). They added an oral Tylenol to her list of meds, but she vomited it immediately, that happened around 5:30am… then around 9:30am they gave her oxy (orally) (we are trying to get on oral meds)… she did well, kept it down… but at 10:15 was give colace.. only got half of it in till she threw it up, that was a big mess. Her taste is VERY sensitive right now. But at least she is getting her pain meds, and keeping them down. After all that we bathed her, and got her into her own jammies. Neuro came by, talked about getting her moving more, we said our goal today is to sit in a chair. They put a collar on her (for her age)… but it was way too big, so they had to get a smaller one… she says it feels good when it is on. I think she is feeling very "head heavy" b/c her neck is now in a correct position, and her muscles in her neck are very weak. She did eat 2 ounces of applesauce this morning, and we showed her pictures of the Child Life playroom… hoping to entice her a little to start moving around. She has lost a lot of weight, not sure how much… but the pjs we put on her, fitted her back home… and today I could probably take in a couple inches to make them fit right. I went back to the house to shower, and clean up her favorite pillow and "cowy", she is napping right now, but when she wakes up, hopefully we will get her in a chair.

March 15th - Morning Update (Post-Op Day 4) - there was no afternoon update yesterday due to some craziness. Not kaylie, but with mommy. Kaylie afternoon was uneventful, she ate more, had a jello cup and 2 mini muffin bites. Ben said she slept threw the night, no problems.
After lunch yesterday I went back to RMH to shower and grab a few things. When I came back to the hospital I got severely sick. I went back to RMH to rest, and then just stayed the night there. I think it was a mix of something I ate for lunch and much needed rest. I feel great this morning, was back over here at the hospital early. Kaylie was up when I arrived, getting meds on board... This morning she will get in a chair! Here is to having a good day!!!

Then…. my most favorite update post from Facebook:
March 15th - WHAT A DIFFERENCE A DAY MAKES!!!! 
Afternoon Update (Post-Op Day 4) - I LOVE "turn around" days!! Today has been great…. after getting pain meds on this morning, she sat up in bed to get the collar on, walked to her bathroom (in our room) (has been using the bathroom in there now since), we walked two doors down to a chiari family (Not sure what I would do without you Laurie!!), walked to the playroom, Laurie helped clean up her hair a little, and put it in pig tails (there was a lot shaved off, and shaved hair mixed in with prep = massive mat mess)… AND she has eaten 2 whole large croissants, along with lots of water, and a Capri Sun!!!! We are doing good! We will be discharged tomorrow!!!! I am so unbelievable happy, proud of her and my husband Ben!!!! He was an awesome daddy nurse last night when I couldn't be there, and he must have the "turn around magic"!!! Hope everyone is having a great day…. B/c We Are!!!

Im SO grateful to so many things… my husband: for always being there, and picking up the pieces when needed. My family (especially my parents): yes, I love them for being there to take care of my other two little ones… but their support ceases to amaze me… when I got sick, I had to walk back to RMH (Ben was where he needed to be, with Kaylie…I would have had it no other way)… but my mom… was there. On the phone with me, make sure I got all the way in the RMH door, OK. I love their support, their love, their endless nurturing. I truly hope I am that type of parent with my kids. 
Our Team of Doctors: My kids seriously have the "PERFECT" team of doctors… I love each and every one of them… they are supportive, caring, compassionate, praying, smart, amazing, … the list could go on and on… we are lucky to have found all of them. 
Our Friends/Supporters - Wow, just wow… thank you for everything, and every prayers… you help us get through these difficult times… Its Love! 

And I wanted to leave this post for now with this… one of my favorite quotes, in times like these: 

Everything is OK...

Im so sorry I haven't updated this…. things kind of move quickly after surgery…. and i feel like Im forgetting to do something all the time. We are going to play "catch up" so, here is what has been posted on Facebook….. in order from surgery…

March 11th, - We are with Kaylie. She is a little swollen, but not too bad. She is doing ok, we are already in our PICU room. She has a drain from her neck, that will be there for a couple days. She has talked... In fact the kaylie that always wakes up from anesthesia... Is always a little bossy/demanding. Yes, I know... Not the Kaylie any of us know!! But I like that... B/c she will make sure to tell these nurses how she is feeling. She has asked for her own pillow, Ben went and got it. Prayers continued please, as the first couple night are rough.

March 12th - Morning Update (post-op day 1) - Kaylie had a good night last night! She did vomit 4 times, but that all ended around 11:30pm. She slept on and off through the night. She did try (she wanted to) sit up a couple times, just for a couple seconds. She still has the drain in, and they say they will keep it in for another day or two. They are keeping her pain under controlled very well. She is also using ice packs on her neck too.
We have a long recovery to go. Dr. Insigna talked to us some after surgery getting Kaylie in to see a Rheumatologist in a few months, after she is recovered some. He is concerned about possible collagen disorders, or autoimmune disorders with her. One step at a time….

March 12th - Evening Update (Post-Op Day 1) - Today was a little bit of a rough day. I think anesthesia has worn off, which makes the pain part come out worse. Her meds got under control better this afternoon, but she is having a lot of light & noise sensitivity… which is not abnormal for Kay… just kind of sucks with all the bells, and dings around. Luckily we brought her ear muffs, that she uses in school with us… so she has been wearing them most of the day. She has also been sleeping a lot. The did remove her foli cath today, and she used the bathroom several times, so that good. Thank you for the continued prayers.

March 13th - Morning Update (Post-Op Day 2) - The night was uneventful. Her pain is there, but being controlled. Her neck drain was removed. They have cut off the IV fluids for now, and are going to be running some blood test and urine tests. She is urinating a lot (frequency wise & amount wise)… and then having urgencies where nothing is coming out. They are a little concerned with the amount of urine being produced. She likes "cowy" her cow, on her face… wink emoticon
Dr. Rekate came in this morning… Dr. Insigna just came in… LOVE HIM!!!
Things are going good…. its just a slow process.

March 13th - Evening Update (Post-Op Day 2) - I first have to start off by saying "Sorry" if you texted me, called me, messaged me, tagged me… or anything else…. I was completely focused on Kay today, I didn't even get to talk to my parents for a good length of time till tonight. 

Today was a little rough…. blood work came back good, urine still being looked at… but we all think it was really just from having "Too" much fluids. They pushed a lot of fluids during surgery… then having a load afterwards… since being off fluids, things have calmed down somewhat. They are still waiting for a couple other test that will come back in the morning.
She got moved out of PICU, to a regular room, it took a little bit to get settled, but by late this evening… we worked on her Beads of Courage (she had received beads right before we flew here).. so we added them on… that took a lot out of her, then we facetimed my parents, Abby & Mason. She was very happy to see them, but that as well, took a lot out of her, and the noise was a little much. But she LOVED seeing them. OH!!! The biggest news! Late tonight she finally ate!!! She had 3/4 cup of a pudding cup and had about 3 ounces of water!!! I know its not much…. But its a big strive in the right direction!! Really hoping tomorrow brings on more, and that she can start sitting up a little more.

not sure if I have the same followers on Kay's blog as I do on Facebook… . but I tend to voice myself on her blog more. I am so full of mixed emotions right now, about everything going on around me. While Kaylie was in PICU, I would walk to the bathroom or to get a cup of water, and would see infant babies in rooms without parents… ever, our whole time up there. It made me sad… for them. I can't imagine ever leaving my child alone. 

This time, Kay's surgery recovery was a lot different than last time. Last time she did vomit a lot… too much, and I am so grateful that we aren't dealing with all that. But her actual recovery from surgery is a lot slower this time. It makes me sad, angry at these conditions… tired of dealing with it ALL. And when I mean all… I mean everything… people, doctors, awareness… Im ready to just throw in the towel. Im tired of going through emotions of friends you thought would be supportive, not being. Im tired of supporting other patients… Im tired of feeling like something is always wrong, or waiting for the next bomb. Im just tired. I sometimes wonder if I should just step back, and us be one of those families where things are good, so they disappear, and just deal with our issues on our own. I'm a little tired of having Facebook, groups on Facebook.. all of it in general..

I think I am just in need of a break…