Cora's 6th Surgery

This surgery date has been months in the planning and because it was not mandatory, they wouldn't do the surgery if she was sick. But, she'd been sick the entire month of February so we prayed a lot to keep her healthy the week leading up to it.

I had planned to be at the hospital about four hours (ended up being EIGHT hours). The procedures were a few blood draws first, then a third attempt at a bilateral tear duct probe, some dental work, and lastly an echo cardiogram. All of Cora's sedated procedures in the past were toddler or baby aged so I was definitely worried about her cooperation. This first picture sums up Cora's attitude quite nicely: FEISTY, grumpy, growling and scowling at any nurse or doctor that dared to look at her.

Once she took the Versed (and got a Ken barbie doll as a price from the nurse) it still took her 30-45 minutes to calm down and let the doctors do what they needed to do and wheel her away into the operating room without me.

The tear duct probe was easy and went as planned. Then the dentist came out and gave me his details. Since Cora is not cooperative with teeth cleanings, x rays, or anything related to the dentist, this is the first good look they've had in her mouth. After finding through x-rays what was going on, they did caps/crowns on all four baby molars because the enamel did not form properly and therefore wasn't effective at protecting those teeth. A few cavities in between teeth were filled. And then the shocker - they pulled all four bottom baby teeth! Apparently her adult teeth are coming in and with her teeth being so close together it was better to pull them now than to wait for them to come out on their own and end up doing extractions anyway. I was really surprised they did it but grateful they saved me several future dentist appointments and sedated dental visits!

As they took me back to the waiting room I got teary eyed again, it's never an easy thing having your child be sedated. She still had blood all over her mouth and was extremely groggy. She was given morphine and extra pain meds so it took her another 2 hours to wake up. In all, she did great.

After waking up the second time she was ready to go home and when I asked her how the popsicle was, she wasn't about to stop eating. So I got a thumbs up.

I did not know how to tell Cora that she lost all 4 bottom teeth and was worried about her reaction. She was apprehensive about it but quickly became excited as I changed the subject to focus on the tooth fairy. That night as she was getting ready for bed she peeked in the mirror - oh boy, she did not like what she saw in her smile. I tried distracting her again with the notion of the tooth fairy. She's now used to her new smile and how it feels but it is certainly much harder to understand her speak! Well done, baby girl!!!

We were at the hostpial from 6am - 2pm. Later that night Ezra fell off the dining chair and hit his head. At dinner he spilled his milk all over himself and me, then he burned his hand pretty badly on the oven. To top it all off I was up all night sick to my stomach. It was a super long day!

Improvements

A few days after the glue incident Cora surprised me again, luckily this time it was in a good way. We were working on mommy school and I had to take this picture. The fluidity of her hand is improving and her letters/numbers/shapes are not so jagged anymore. She's getting there!

Cora and I went on a girls trip to get my hair cut. She surprised me by getting her hair cut too! I mean, this is the same girl who doesn't let anybody touch her hair. This is the girl who hates Mom doing her hair every week for church. This is the girl that hates brushes and shampooing and anything at all to do with hair. But Cora climbed up into the chair and sat perfectly still. She didn't love the process and especially didn't like seeing her hair falling on the cape, but she allowed it. Big props to you, my darling girl!!! To celebrate we stopped at the dollar store on the way home and of all things she picked out a bag of cotton candy. Her first professional haircut is in the bag.

Thoughts on Cora

I've had a couple thoughts the last few weeks I wanted to write down to sort it all out. My long term goal for Cora is that by the time she's in Kindergarten she'll be caught up to her peers and be mainstream. 

Her PT is going well and she's almost caught up. When I see a child her age run and jump around I can still see a difference - Cora's reflexes are slower (like starting a race, she won't jump the gun, she's very slow getting started) and she's not as precise. She has great endurance and will try almost any physical activity. Her handwriting/drawing is definitely behind, she cannot write any numbers or letters and can't draw a smiley face or a stick figure. Her speech is also definitely behind, I think she'll be in speech therapy at least for another 2-3 years. Her social skills lack a few basics the most prominent being speech. I've noticed the last several play dates we have she would rather play with kids younger than her. I don't know if that's because she identifies better with them in terms of her speech and gross/fine motor skills being developmentally delayed or if she just prefers younger kids to play with. She has a hard time being in large groups, for example her music class has about 6 kids in it but we attended a make-up class that had 15 kids and she did not do well at all. She just sat in the corner and rocked herself. I'm not sure if she's just overwhelmed or if she has anxiety or if she's not confident in herself.

I've wondered if she'll need to repeat Kindergarten twice so that she has a more concrete understanding overall and sharper skills in those areas. I've also wondered since she prefers small classes that maybe she would do better in a special education class that's small. Maybe mainstream isn't the best option for her? Maybe for her to be successful and to develop those skills she needs to be in an integrated class? Or if she does mainstream Kindergarten, maybe she'll have to repeat it and then be mainstream? I struggle with what to do when that time comes because I do want her to be mainstream but I need to remember that what I want isn't necessarily the best thing for Cora. Maybe the best thing for her to progress quickly would be a small special education class.

As I've been potty training and trying to be more in tune with her these last two weeks I see such innocence in her. She's still different than kids her age and she just has an innocence about her that other kids don't seem to have. Something about her eyes are just so innocent and pure, I really don't know how else to explain it. She's a smart girl! Even though she has physical delays, her mind is sharp. There seems to be a kind of disconnect between what her brain is telling her and being able to execute that action. She can count and she knows a lot of letters but if you ask her to draw it, it's impossible. She can't lie and she makes the greatest faces when we ask her something like, "Cora did you hit Ezra, is that why he's crying?" Most kids would say no because they don't want to get in trouble. She says no because its the absolute truth and makes a face at us like, "how can you even ask me that, of course not!" I know for certain when she says something I need to believe her because she may be incapable (is that even possible?) of lying. Even when she doesn't need to potty even though it's been 6 hours since she last went, if she says no then she really doesn't.

She has made great strides the last 6 months. Yesterday we worked outside in the yard and she didn't bat an eye at the lawn mower. Last year she threw fits, ran inside scared, and covered her ears from the noise. She has also attempted a two wheel bike with training wheels and didn't bat an eye. Last year she wanted nothing at all to do with it and only wanted the baby tricycle. Also, her sentence structure is more fluid and elongated with about 7-10 words per sentence.

Her eyes and the innocence in them is just so sweet and gentle and honest and pure. I learn so much from her everyday. I absolutely need her in my life and I'm so thankful to be her Mama!!

Kindermusik

For the last several months Cora's therapy schedule has changed around a lot and at one point it really slowed down. I wanted to keep her engaged and challenged so she didn't lose momentum with her progress and development so I enrolled her in Kindermusik. Julie's mom owns/teaches it and she's so wonderful! It's a music class divided into age groups ranging from 0-7 years old. They have a curriculum that's followed but everything is active in this class. Cora's able to practice her social skills since she's not in a preschool class, speech, gross and fine motor, cognitive, etc. It's been really, really good for her and I wish I'd had her and Kimball in it a long time ago. On this particular day they were supposed to bring something that they could dress up in and pretend to be birds flying. I love her teacher's accessories, especially the yellow gloves on her shoes for the duck feet.

I've also had Cora evaluated for Sensory Processing Disorder and the results were pretty borderline. She has a lot of things about her that are just preferences and not necessarily problems but some as her feeding therapist called it, are quirks but still not problems. So she's going to be seen again by an occupational therapist. I also filled out a questionnaire about autism and she's definitely not autistic. It's so easy for me to look at her "preferences" and "quirks" and especially her speech and see how far she has to go. I can still see quite a big difference in her versus other kids her age. But then we run into therapists from the Guild School and they tell me how remarkable she's doing and remind me of how far she's come. I'm so proud of Cora! I thought by now I'd have a clearer image of how she'll be the rest of her life but I'm still very unsure of that. Most of her biggest setbacks have to do with speech so I'm anxious to see what the big picture looks like in a year or two from now and see how much she's progressed. 

She's still so perfect in my eyes. I love the way she calls Kimball "Gobble" and when I ask her to do something she'll salute me and say "my pwesure" (pleasure). She's very friendly and says hi (or currently Merry Christmas with the season) to everybody we pass. She's certainly strong willed and has a mind of her own. I'm so anxious to see where life takes her and can only hope that she'll love herself and find happiness in the little things as she currently does.

Cora Update

Cora finished her Feeding Therapy and has been off thickener for the last 3-4 months. It has been so nice! I also quit giving her formula and the only milk substitute that her stomach will tolerate is goat's milk. Earlier this month she did have a bad sinus infection and pneumonia, I don't know if that was caused from her not being on thickener or what but she's been fine since then on the normal consistency. She does tend to get sick quite often and stays sick for a lengthy period of time so I got her tested for autoimmune deficiency disorders. All the tests came back negative which is good and I got her a flu shot so I hope that helps this year.

I've noticed for quite some time that her hearing is becoming more and more sensitive. If anything is shouted or objects get dropped or she hears a motor - anything like that - she always covers her ears and says it's too loud. Even the radio or TV being on too loud. It doesn't scare her at all but it bothers her. A few months ago I asked her therapists about it and they said it's just a quirk that she has and it's not necessarily a sign of autism or sensory processing disorder. Her new PT mentioned it to me last week and she suggested that we get her evaluated for sensory processing disorder just to be on the safe side. I also called her ENT to get his thoughts and she's going to have her hearing tested again in December.

Since her therapy schedule has slowed a little bit I enrolled her in Kindermusik to help keep her challenged and engaged and moving in the right direction. She loves it! It's a small class which has been good for all levels of development - speech, physical movement, social skills, and cognitive learning. She hasn't really picked up on the music aspect of it yet but the interaction with other kids, being able to connect singing with speech, and physical movement and dancing has been really good. 

Here are a few pictures of her last PT session.

Cora's Update

Cora has finally decided to talk!!!!!!! I cannot put enough exclamation points behind that statement, our lack of communication is VERY frustrating! Her and I only know a handful of signs and when signing isn't adequate and the "show me" isn't working, she gets frustrated and whines or drops to the floor and throws a major fit. I'm sure in her eyes that I do the same, haha.

The words she does say she uses them consistently and in the correct context every time. She also will say them on command. It's SO lovely!!! We still use sign language and I make her attempt to speak words that she doesn't know but she's picking up two or three new words every day. Right now she's up to about 20 words!!! My favorite is the way she says Daddy, it's so dainty and cute and melts my heart every time.

Just one more thing that she's defying the odds on and proving that miracles happen. She's a living testament everyday and I'm so grateful that she's mine.

Cora saw the allergist who was thrilled to hear of a successful reintroduction of wheat into her diet. I especially am grateful for that! Although eggs cooked by themselves like scrambled or fried she's still intolerant to, I can bake with eggs and milk. I still can't cook with sour cream or cheese or milk but I can bake with it. The difference is that baking changes the protein differently than cooking, it also has to do with temperature. But, I am so thrilled that she can eat wheat and I can bake usual stuff. No change in the beef so we still avoid that. And she's still drinking the Elecare formula ("medical food" as it's called on the label) and thickened liquids due to aspirating.

Hydrotherapy

Both of the kids have made HUGE strides in their bravery and technique with swimming, all thanks to Cora's hydrotherapy. 

The first week Cora wouldn't even take her shoes off to get in the water. Now she'll put both ears in, her mouth, lay all the way on her back to get her hair wet, and go on her tummy. She'll let Alicia take her into the deep end and she's even learned the blow bubbles through her nose and pinch her nose to keep water out.

Because I'm cheap and won't pay the $8 for myself to swim for 30 minutes, Kimball has to be in the pool on his own. He's also learned to pinch his nose to keep water out, will jump in, put his head under water and float on his tummy, and loves his goggles. It's all self taught but I'm impressed at his progress as well, given that he's had to teach himself.

Cora's Update

Cora had another swallow study last week which didn't show any aspirating OR penetration!!! Great news but we're not out of the woods yet. It's a bit risky for her to go from nectar thickness to regular water so we've reduced the thickness to half nectar. Her speech therapists are doing several exercises to get the back of her tongue and those corresponding muscles strengthened with a heightened awareness. I'm really excited for her. Although we're not off the thickener completely, she's still making progress. I couldn't ask for anything more.

I also had a meeting with her Family Resource Coordinator (Carol) and the school district to talk about her transitioning from the Guild School in the fall. Her scores for speech were quite low so she qualified for that. The OT scores were .1 point below for qualification, and I can't remember where she scored with social or PT. She needs to have two areas that are two standard deviations lower than average to qualify for the school district's special education preschool. We meet with them again at the elementary school at the end of September to be retested for all areas and get a more accurate reading of where she's at overall. If she doesn't qualify then we'll continue to find speech, OT, PT, social, and cognitive therapies through a private practice.

Her rash is looking a lot better and very minimal so for the past two weeks I've been giving her bits of gluten here and there. Mostly just snacks - regular pretzels, regular graham crackers, waffles or pancakes, etc. So far I think she's tolerating it well but I'll keep it at a slow pace and eventually work up to regular breads and muffins, etc.

Cora's Update

Last week Cora had five doctor appointments and I think we're still trying to recover a week later! It was so tiring and draining but we knocked them out one by one and are done with appointments for several weeks.

This is Cora getting her echocardiogram before seeing the cardiologist. I never in a million years thought she'd lay perfectly still for 40 minutes during the echo but she did! When they asked her to move her arms up or her chin up or lay on her side, she followed directions precisely without fussing. And we got good news! Both heart defects are still mild and we don't need to do any surgery at this time or any time in the near future. If she were to have problems it would likely be as an adult and the surgery would not be open heart, but a minimally invasive balloon through the femoral artery. We don't have to go back to cardio for two years!!!

At school she failed a hearing test three times in the right ear. They felt like the readings were accurate and luckily the next day was an appointment with ENT. They also did a hearing with an audiologist and found the same results - failing in the right ear. But the doctor found fluid and an ear infection, which explains a lot! He put her on a potent course of antibiotics and if it doesn't clear it up then we'll resort to putting in ear tubes. He also ordered a swallow study which he and the SLP are certain she'll pass so I'm anxious to get that done. Boy, wouldn't it be a dream not to thicken up all of her liquids!

We are still fighting her darn rash. I have no idea if it's environmental or food allergies. It's typically an allergic reaction to something but I'm completely stumped. We did a blood draw and are waiting for the test results on both of those panels.

Cora's crossing a lot of doctors off her list, we are mainly seeing only three specialists right now: ENT, allergist, ophthalmologist. The other 10 are either once a year or only as needed. Whew! We'll find out in July if she needs another surgery for eye tubes (most likely yes), in June if she has a hearing impairments and/or ear tubes (I'm thinking no to both), and June for the test results of the panels.

What a trooper and fighter, we sure love this little warrior!

Oh and we got her results from the school's cognitive evaluation......drum roll please.....................she tested only one months behind!!!!! I cried, oh my gosh did I cry!!

Cora's "Official" First Word

Cora's ENT did a nose culture and found her to have two major bacterial infections causing the chronic sick-like symptoms. She's be on a strong antibiotic for 21 days, I'm just glad they finally found the problem.

She has been saying Mommy!!!!!! I can't get her to repeat it when I ask her to but she says it pretty often and pretty clearly. I think she's so used to grunting and pointing to communicate that she's not motivated all that much to talk. But her babbling has also picked up and we're getting lots of good consonant sounds. She's got a long speech road ahead of her and I think it goes hand-in-hand with her dysphasia, aspirating, reflux, and low muscle tone in her throat. I also think once she (hopefully) outgrows the aspirating that the speech will come naturally. But we are slowly seeing progress!

Completed Surgery #3 & Happy Thanksgiving!

The eye surgery was done just two days ago and Cora is doing great. It was a minimally invasive procedure with no recovery, the actual surgery was just 10 minutes long. She still has some blood and drainage coming from her nose and eyes but that's to be expected. I'm always amazed and get a very different, pinpointed feeling of.........worry, love, impatience, gratitude, etc, every time I go into the pediatric surgery center at the hospital. This was Cora's third surgery and sixth sedation, you'd think the more I go through it the easier it would get as a mother but it doesn't. It's always nerve racking, I think mostly because Cora's a high risk for potential anesthesia problems and/or any other complication regarding her heart, respiratory, and how her brain will react. So far we've been blessed every time.

It's been a few months since we've had so many doctor appointments or heightened problems, I almost forgot what it was like to be a special needs parent. It was nice to be "normal" for a while. I can't explain the true magnitude of the love and bond that I have for Cora. My relationship with her is different than it is with Kimball, not that I love Kimball any less, in fact quite the opposite. She and I are just unique and different together and I treasure that. I treasure being her Mama and cannot express how grateful I am for this entire journey. It is because of Cora that I've experienced a different kind of personal revelation (who knew there was more than one type?). It is because of Cora that I view life itself in a whole new light. It is because of Cora that my relationship with God the Father and his Son, Jesus Christ, is so significant.

On this day of Thanksgiving, I'm so grateful for my little family that brings me so much happiness, for Lance's work that brings his happiness, and for the gospel which makes us an eternal family. I'm grateful for the gift of the resurrection and forgiveness. I'm grateful for a hard working spouse who honors his priesthood and holds his children dear; all that he does he does for us. I'm grateful for a country that was founded by just and righteous men which allows me to give thanks and praise to our merciful Savior. I'll praise His name forever!

The kids might be sick today on Thanksgiving, but we'll still have our own little feast. They loved watching the Macy's parade and after some much needed naps.......gobble, gobble, gobble!

Cora Update - Surgery #3 and the Reflux Battle Continues

The last two and a half months have been a bit of a whirl wind again, I almost had to break out my notebook and start writing down every little thing that I noticed with Cora. It started with her shirt being soaked from drooling due to cutting her two year molars, it irritated her skin and gave her a rash which then spread to her back. Then her nose started running and was always green and gunky. Then her eyes were watering really bad again in addition to her waking and screaming at night. She'd sleep fine during the day for a nap but night time was a different story and I mostly was unable to console her.

At first I thought what anybody would, she's sick and has a cold. No biggie. But after a month I started questioning that and further contemplated what could be wrong. After two months of this even the therapists were telling me that something was wrong and the school nurse said her ears didn't look that great and to get them checked out. I couldn't get in to see her regular pediatrician so I opted for another provider who said that Cora had eczema and seasonal allergies. I politely disagreed with both and went on my way.

I started thinking more about getting another round of allergy tests done in case that was the culprit but I can't get into Cora's allergist until January.

Then we had a follow up appointment with the Ophthalmologist who after walking in the room and seeing Cora asked if she'd been crying. Nope, she's always like that. Ok, so the tear duct probe surgery that was done in May was not as effective as we'd hoped. How about surgery on her eyes again, this time putting in a tube? So we have surgery scheduled for November 24th on her eyes. It's minimally invasive, takes about 15 minutes, and I'll probably be home by 8:30am with no recovery needed. I felt relieved, honestly, because I'd like this problem fixed and I know people mean well but I get so tired of all the questions: oh, why is she so sad? Has she been crying long? Poor thing, what's wrong? Oh I see she's got the crud that's going around? No. This is normal for Cora.

And then that night a wave of previous emotions just leaped into my lap unexpectedly. Because of the surgery but mostly because of this "cold" that's been bothering her for so long. We just went through this in the spring, although much more serious symptoms and circumstances, but still. Just when you think things are going well and you're out of hot water, you have to jump right back in with both feet. I felt so defeated. I felt so bad for Cora! And so I cried in bed and cried and cried. It had been a long time since I cried. I finally called Lance into the bedroom (was downstairs working) and needed someone to talk to. So we chatted and I cried a lot more. I didn't necessarily feel a big weight lifted but I did receive inspiration. You can call it a light bulb moment or revelation or a motherly instinct or a combination of all three, but I instantly knew what was wrong.

Cora was still suffering from reflux - and bad! The only option left for her is medication, she's already had the nissen fundoplication surgery and the only thing left to help her is reflux medication. The problem with that is that she's highly sensitive and allergic to reflux meds. Back in May when we had the tear duct probe and endoscopy done, we knew for absolutely certainty that reflux was pooling at the top of the fundo. And not just acid reflux sitting there but she's been aspirating it as well, both into the lungs and through pharyngonasal regurgitation. That definitely explains the runny, green nose and the constant watery eyes. Poor baby girl!!!

A low dose, mild reflux med was prescribed in May after seeing the reflux pooling, I never tried it on Cora because I knew she's be so intolerant to it. However, also knowing that this is the only option left for her I decided to give it a go. She's now been on the Famotidine for 10 days. The runny and green nose has cleared and she's not waking up screaming several times a night any more. On the down side, she's also been constipated (side effect) and has a new rash (intolerance). So we're stuck in a catch 22 where the medicine is helping but also causing ill effects.

I'm hoping I can get the rash to subside altogether. If that doesn't work then we swap meds and keep trying for one that will work for her. I'm crossing my fingers that this fixes the problem! (And if the eye tubes don't work then the last option is surgery again, drilling holes into the nasal bone).

IN GOOD NEWS........the last two weeks she has been jabbering A LOT more! I was hoping that once she got the walking down and it became second nature to her, that her speech would develop and pick up. She doesn't say anything that makes sense, it's just baby jabbering. But the fact that she's making audible noise is great news!!

Thank You, AFO's

This girl almost weighs 30 pounds. She's heavy. I'm really tired of packing her around everywhere and am so anxious for her to be walking! On the upside of that I have amazing biceps in my right arm. But, now that we are about two weeks into wearing the orthotics, she has been walking a lot more! I'm hoping in just a week or two it'll be official "walking" as her main mode of transportation. That'd be nice.....

Cora Update

Cora had an appointment with her dietitian on Monday. She's gained 1.5 pounds in a month since having the Gtube removed. Excellent! We are starting to reduce the caloric density of her milk, she's been on 40 calories since the whole food allergy ordeal in the spring. We'll see in the next six weeks if she continues to gain on her own.

She's had her orthotics for two weeks now and I've already seen a big difference. She still prefers to scoot or crawl but whenever I see her on the ground I always tell her, "Cora, stand up" and she immediately gets up and walks. This week she does that more on her own which is nice. I did have a few concerns about the orthotics wearing her ankles raw and the back of her leg so we went back and after remeasuring, they're going to make a new pair but slightly bigger. Oh, and out of curiosity even though insurance covered the orthotics, I asked the receptionist how much those little things cost. I was assuming $2-500. Those buggers cost $1500!!! I was quite surprised, I didn't think they'd be nearly that much.

The next few months we have ophthalmology and neurology follow up appointments. It has been so nice that the doctor appointments have finally slowed down a bit!!! I almost don't know what to do with all the extra time, but it has been so nice, especially for my nerves.

She started her new group therapy class at school and I'm so glad she gets the extra social interaction since she's such a social butterfly. There are about five other kids in her class and she absolutely loves it!

Overall she's been doing really well and it's been several months since we've had any complications arise. I'd like to keep it that way. She's developing quite the personality thanks to Kimball teaching her a lot of funny faces. She's such a darling little girl!!

AFO's

These are Cora's new orthotics or specifically AFO's. Aren't they so cute and little? She'll be wearing these every day, all day for the next year or until she grows out of them. When she does walk her feet are pointed outward with the bottom of her feet in. These orthotics will help give her that additional balance, confidence, and straighten her feet out so she's walking properly. I'm really hoping that within a week of wearing these that she'll just take off walking. She's so close and she knows how to do it and that she can do it. If these don't work then we'll have resort to a little baby walker/gaiter to help her. But everyone is confident that this will be the last step and she'll just take off. Fingers crossed!

Cora's Walking

This was Cora's very first independent steps. Of course, she went back to crawling and we are still working on it. Walking isn't her main mode of transportation yet but she'll get there!

Good Bye, Gastrostomy Tube

 Last month we had a long anticipated doctor visit with the GI specialist and co-treatment with our dietitian. I was looking forward to this appointment since March because I knew they would decide if now is a good time to remove Cora's gtube or not. The general rule is, you have to not use the gtube for at least 6 months. Here are Cora's stats:

• Has not used the gtube for nutrition since December
• Had a set back in the spring; she was really sick, starting to lose weight, and classified as failure to thrive. We learned she has four major food allergies and once we addressed those she started putting weight back on again.
• During the spring set back we used the gtube for water. We did 8 oz bolus' once a day for two weeks.
• She's still in 75-90% for height and weight. She put back on the weight she'd lost in the spring and is now caught up nicely!

We got the green light from both the dietitian and Dr. Z to remove the gtube!!! Here are the pictures, it wasn't a big deal at all and no procedure. They just pulled it out, put a dab of glue on the stoma and put two steri strips across it. Easy.

Here's the happy girl after the appointment!

Here's how the scar looks today, it kind of looks like a second belly button. The scars above and below it are from the stitches she had for 2 months that was holding the gtube in place while the stoma formed, and the inch long scar to the left of it was the incision scar from the surgery.

However, I was not prepared to deal with all of the emotions that came with removing the gtube. Anxious, happy, thrilled, nervous? Sure! Oddly enough, it felt like Cora was losing a limb. It felt like we were leaving a part of her behind when we left the hospital and she wouldn't be complete again. I felt sad because this gtube was literally her lifesaver! It saved her life and has been a part of her for 1 year and 3 months. And just like that, it's gone. I bawled. I almost felt the need to have a funeral, some sort of proper good bye and showing my respect. I couldn't believe how attached I had become to this little medical device and here I was sitting in the car in the hospital parking garage, just bawling my eyes out because I had to mourn this loss. I was so incredibly happy, it IS a good thing to have it removed because Cora doesn't need it because she's thriving so well on her own. But I was just so sad to say good bye, I needed more time to cope with this separation. And I shocked myself, I had no idea that I would feel this way until it hit me like a brick wall. The whole processing of it was just bizarre.

Needless to say, Cora is doing great without it. This is proof and this is how she eats every meal, like she's completely ravenous!

When we got home from the appointment I took Cora in to show Lance the good news. I said, "Cora, show Daddy your button." She lifted her shirt to show him and looked up with the most perplexed look on her face! She kept looking at her belly and up at us with inquisitive eyes as if asking us, "Where did it go?!" She realized it was gone and she still lifts up her shirt and looks at me wondering where it went.

Cora's Seizures and EEG

While we were on vacation in Twin, Cora had two seizures (that I know of) that occurred on two nights back to back.

The second seizure: A few hours after I'd put her to bed she'd woken up and cried so I brought her into the living room and rocked her for a while. She had deep, slow, even breathing so I looked down to see if her eyes her closed. Her eyes were open and completely glazed over, she was totally gone from this world. I picked up her head and turned it toward me so I could get a better look and to see if she'd snap out of it but no response. This lasted about 5 minutes. The instant I saw her eyes like that I knew something wasn't right.

The first seizure: The previous night the same thing happened with her deep, slow, even breathing so I assumed she was asleep until mom said, "Cora, your eyes are wide open." I didn't think anything of this until the next night when the second absent seizure occurred. So I started grilling mom for some answers, she didn't respond, didn't wink, twitch, or move in anyway. It lasted probably about 4-7 minutes.

I've heard of absent seizures before with other children who have the same corpus callosum disorder as Cora. In fact, at her neurology appointment a few months ago in May I specifically asked the doctor  if she would have seizures. He said she has a 2-4% chance of them occurring and if she hasn't had any yet then she probably won't.

Technically, I don't know for sure if that's what Cora was experiencing because I was on vacation and no neurologist was there to witness and confirm it for me. Since being home, Cora had an EEG and I'm still waiting for results. The whole EEG procedure was awful, the worst preparation for a test I've ever done because Cora had to be sleep deprived for it. I had to keep her up until midnight, and then wake her up at 4am and keep her up until the appointment at 7:30. There are 29 electrodes and they use this gel and wax stuff to stick to her head and cover each one with tape. Then they wrap her entire head with gauze so the electrodes don't move and they hope she sleeps during the next 30-40 minutes while the computer tracks her brain activity. I'm not sure what they're specifically looking for or if she's supposed to have a seizure during that time to confirm that she did indeed have one. If they are, she didn't have a seizure that I know of but there are lots of different types of seizures.

Also a note for myself, about 2-3 hours after each seizure in Twin Falls she'd wake up again crying and screaming. I wasn't able to console her or calm her down at all so I just had to let her cry it out. I don't know if this was another type of seizure or not but it only happened after those two seizure incidents.

The EEG was awful and I will never put Cora or myself through that again unless her life depends on it. She had some crazy bed hair from all of the wax on the electrodes and you can still see all the little indents on her forehead. Poor girl!

Cora's Update

I have not returned back to the regular seven appointments a week and I don't think I ever will. That was INSANE and I can't believe I kept that up for 18 months! So Cora and I do about one doctor appointment a week in addition to her four therapy appointments, it seems so much more manageable that way.

Recent test results

• MRI of the brain - everything is normal and the two brain abnormalities are still there but unchanged, which is good
• MRI of the spine - normal, no spina bifida or tethered cord
• Blood tests - the first round was positive for Mitochondrial Disease but the second round and urine sample that tested for more specifics of the disease were negative for Mitochondrial Disease
• OAE test - hearing test passed and ears were cleared, no tube surgery
• Gtube - still on track to be removed at the end of summer-ish

Finally some good news!

Swallow Study

I knew I was forgetting stuff on my last update with Cora, forgot to document her last swallow study!

• Weak tongue control of liquids and solids but otherwise appropriate chewing and sip patterns
• Premature spillage of liquids and solids to level of valleculae & pyriform sinuses. Delayed swallow initiation.
• Deep penetration with nectar liquids by sip cup. Improved control with open cup.
• Silent aspiration of juice from mixed consistencies but safe swallow with all other solids taken. Needs additional time to swallow bits of residue.

Recommendations:

• Continue general toddler diet with nectar liquids. Avoid mixed consistencies. Combine 1 packet Simply Thick (nectar) with 4 oz. juice/water. 40 cal/oz Elecare appears appropriately thick at this time.
• Continue with open cup. May attempt spouted cup with decreased flow or open cup trainer.

So she graduated from half honey to nectar consistency and is not allowed to use any sippy cup (soft or hard plastic). I was glad I brought oranges! I had a hunch that once she bit into the orange, the juice would be too thin for her to handle. And indeed it was so she can't have oranges or watermelon or any other foods with mixed consistencies, like soup.

The best part of this appointment was about 3/4 of the way through we took a break. The xray video is a live shot and when the video stops, it'll freeze the frame. So during the break Cora saw herself on the monitor and kept pointing to the monitor and then back and herself, then pointing the monitor and then back at herself. She knew she was her on the monitor!! Clever girl.  :)