Merry Christmas

Brooke and Julia playing in their new toy.  Ryan's mom got them a 'Fun Roller'.  This Roller is about 4 feet high.  It is a blow up toy that is a big cylinder.  Brooke gets in side and we roll her around the living room.  She thinks it is great.

Merry Christmas from Julia!  Notice the cage in the background.  It is strategically placed around the Christmas Tree.  Julia would be on its top branch if we didn't have it surrounded.

Brooke in her Fun Roller

1 Year Anniversary - Seizure Monster bye bye

Today - November 7th, 2009, is the 1st anniversary of the day Brooke became seizure free. 365 days have gone by since the 'seizure monster' came to Grosvenor Ct. Brooke started the KetoDiet on November 3rd, 2008. By November 7th, we saw no more seizures. Here's what else we saw....

1- Tears - this may sound bad, but Brooke went from a lot of whining, never a tear, to real tears. Really truly, she never cried tears before the diet. Somehow, after the diet, her tear ducts began working appropriately.

2- Sitting - She started to sit within those first two weeks. The sitting has much improved since then as well.

3- Full breathes- Brooke never breathed through her mouth, only her nose. And she only breathed with the very top of her lungs. Almost like panting. With the diet came almost full breathes.

4- Decongestion- This one goes along with #3. Brooke was always congested. We went through a continual supply of Ocean For Kids, and everyone in her life had the bulb suction mastered. Today, Brooke gets congested when she has a cold. Her boogs are normal boogs. That's all I'll say about her boogs.

So....this diet has been amazing for Brooke and for our family. Thank you to Dr. Sherr for suggesting it and subsequently pushing us to try it for Brooke. Thank you to Brooke's keto-dietitian for her dedication to our child and the 120+ keto-children that she pays just as much attention to on a regular basis. Thank you to our families for learning and respecting the particulars of the diet. Thank you for all of the amazing people that have come into our lives that love her and care(d) for her.

Today I made a real keto-meal. 20 grams of chicken, 14 grams of butter, 10 grams of onions, 14 grams of green beans, some chicken broth, and 17 grams of oil. I made all of the components and pureed them with the oil in the vitamix blender. Brooke ate an entire 30 grams of her meal. Close to half!!!! That means she almost took the equivalent of 1/2 a bottle. That is a huge step for her. We will see if it continues, but what a cool thing to happen today - our 1 year anniversary of her seizure free life.

Not Always so Rosie....But that's not all that bad

I spend quite a bit of time focusing on the positive in this blog. You'll notice that there are large gaps of time between postings. We live a good life, a happy life, a life filled with love and laughter and all those things people hope for. I won't take away from any of that for a second. With that being said, I feel as though I sometimes misrepresent the reality we live with. I don't know if I do this for everyone else or for myself. Perhaps I feel guilty being entirely realistic. Perhaps I don't want to put it all down in writing, because that's admitting it to myself and facing the truly difficult life we live.
This morning, after weeks of ear infection, followed by weeks of increasingly excruciating gas pains for Brooke - arching, yelling, screaming out - 5x a day venting sessions to get the bubbles out, tummy antibiotics, and now a head cold, she slept soundly in her amazing Big Girl bed - the sleep safe bed. It moves up a down, and the head of the mattress elevates as does the foot part. She has a pink comforter and brown and pink polka dotted sheets. I watched her sleep. And I thought to myself...how could everything look so perfect, yet be so miswired inside. How could this life be so cruel to my little angel? Her long dark lashes were resting so perfectly on her pink cheeks and her curly hair lay peacefully on her pillow. When I look at her like that, I can imagine her opening up her eyes and smiling at me, saying "mommy" and reaching up to cuddle. I can imagine her hopping out of bed and running to Julia's crib to see if she is awake. That's what Brooke wants to be doing!
I am thankful that my little girl does smile. She may not look at me when she smiles, but she smiles at me. She is saying moma. She likes to cuddle and hug. I am so thankful that we can share those human necessities. I realize that so many people don't get that from their children. I don't take it for granted. But my God...I want her to walk. I want her to not be frustrated because she can't crawl and speak and digest her food. She is on this diet that we are so grateful for. Without it, she would still be seizing multiple times a day. Without it, we may never have met the Brooke that we know now. Again - with that being said - why can't she live without this diet that makes her stomach cramp, constipates her to the point of needing daily miralax, tastes horrible, and restricts her eating so severely.
Why!!
Tonight she threw up for the 2nd time today. This simple head cold is a lot for her inexperienced body to handle. She struggles with the mucus because her brain cannot tell her muscles to fire correctly and expel it from her lungs. She gags and cannot stop herself from loosing it all together. We take a little Robitussin or NyQuil and move on with our day. Brooke cannot take these medicines because they contain sugar and that would put her out of ketosis.
She's asleep now. We have the head of her bed elevated. We have blankets rolled up holding her in place. We have her hooked up to her pump with a slow drip of water and a Farrel bag that allows gas to escape from her stomach as she sleeps. That is our reality tonight. One last time - with that being said, she lays there with her long dark eyelashes resting on her beautiful cheeks. She has her Binky in her mouth, and she is hugging the teddy bear that lights up her bed at night. She looks perfect. Minus all the tubes and strange bed, ect. she looks so perfect. Like she was supposed to end up with this hand in life. Like we were all supposed to be blessed with her. Then again, she also looks like she should be able to crawl out of her sleep safe bed in the morning and into our bed. Like she should be able to wake me up to make her sugary cereal or pancakes.
We have so much to sort through on a daily basis. This is an exceptional life that we live! We have been given a chance to experience something most people never come in contact with. Tragedy mixed with pure joy and love. They can all be wrapped up in one congruent package. I can feel the worst pain and feelings of loss and anger and in the same day I can feel so much hope and certainty. Quite amazing, this life I have been given. Thank you for choosing to be a part of it. Thank you for allowing me to share it with you. And from now on...thank you for letting me be very honest about it all - for all of our sakes.

Ongoing Saga of the Ear Infection and other stuff

I have a quick minute to send out an update. Ryan took Julia over to his friend's house to watch South Africa versus someone in Rugby. Brooke is still asleep. I have had breakfast and a small cup of coffee (with non-dairy creamer for Julia's sake). Well...Brooke just woke up. Isn't that how it goes. I'll make it quick...
Monday through Wednesday - B was in a great mood. Things started to go downhill again on Wednesday afternoon. Grumpier...harder to please...wouldn't really take her bottle. Her ear seemed sensitive again. I made an appointment for the next day with her pediatrician and one on Friday with the ENT (Ear, Nose, Throat MD). Haven't seen the ENT since she was 2 months old! She threw up her nighttime food/bottle and spiked a temp that evening. By the next morning, her ear drum had burst again. Seriously! Again!
We went in to see her Pediatrician. Talked about a variety of antibiotic options. This followed by that. If that doesn't work by Saturday, we'll try this other one. Finally we opted for two shots of Rocephin - a bigger gun antibiotic that hits more bugs. Not great for a kid who gets Antibiotics all the time. Brooke isn't that kid though, and we need this over with!!
Since the first shot, she is in a better place. Happier and feeling better! Yeah!!!
We got the KidWalk!!! It is so amazing. I absolutely can't express enough how amazing it is seeing her in it! She is going backwards in it, which is great. Purposeful movement is purposeful movement. She drools like crazy when she's in it because she is concentrating so much! It's so funny. She's normally not a drooler either. I took some video with my camera, but I turned the camera on its side - so the video is on its side. I'll post some really great, right-side-up video here soon!

She sits...here's proof!!

The Bear that walked through the backyard of the Tahoe house.

Brooke got her very first ear infection. Hats off to the parents who's kids get ear infections all the time. What a nightmare! We couldn't figure out what was causing her fever. First thought was ear infection. The doctors then suspected a UTI. We jumped from antibiotic to antibiotic. On Friday her eardrum burst. That's not pretty. Brooke seemed more comfortable, but the pain didn't ease up entirely until the last day and a half. She's finally getting back to her old self. She's smiling, laughing, sitting, goobing...back to her old self. Here's a video of her sitting. I love it. It's a long one, but I couldn't stop recording. She probably sat there for 10 minutes. When she finally fell over to the side, she rolled over and threw a kiss in the air. That part is in part 2 of the video. I'm not throwing posting that though. Just know that I gave her the standing ovation she deserved.

Julia is doing great. She blows my mind everyday. I can't believe how fast developmental milestones emerge. From one day to the next, she is accomplishing something new! I seriously feel like everyone was keeping a big ol' baby secret from me. Like no one wanted to tell me what was really supposed to be going on! Probably for the best!! I say all this with a smile on my face of course. Here's a picture of her on Lake Tahoe with us. It was quite cold. The hum of the boat puts her right to sleep. We tried to wake her up at one point with a rush of cold Tahoe water over the bow of the boat, but it only lasted a minute before she went back to sleep. That last part really happened. It was an accident of course and shortened my life by many years!

It's been a busy 9 weeks! With that being said, I'll give you some Brooke updates...

She is trying to stand. She wants to stand so badly. We are in the process of getting her a gait trainer to assist in learning to walk. It's called the KidWalk. Here is a link to a video showing a few kids in it. I'm really excited to have it. I don't know where we can put it with all of the other kid stuff we have in the house these days. Between the two girls, we are up to our eyeballs in swings, standers, chairs, and toys. Now...the doctors aren't saying she's going to walk or anything. Dr. Sherr told us that he thinks she'll stand - but walking...we'll see. We remain hopefull and completely open minded.

She continues to work so hard in all of her therapies. She especially loves water. She's got some new cool Dora shades that she thinks look quite amazing on her. She makes sure to let you know that.

Brooke has a few words now...Bubble is one that pops up here and there. When she does say it, it is as clear as a bell and directly relates to gas production in her stomach. She says dada all of the time now. Lucky guy! She is also saying 'mo' for more. Again, not consistently, but clearly and deliberately when it comes. It seems like all her language comes and goes. Very interesting. We will have three days of 'mo' and 'bubble' and then the words dissapear for two weeks.

I've got a New Sister!!!

Brooke & Mom in a swing at the park

Brooke and Julia smooching

Julia on Easter - There are legs under there!

Brooke on easter in the girls' new double stroller

Brooke wants you all to know that she has a new toy! A baby sister named Julia! Julia Frances DeMar was born on April 7th! She weighed 7lbs. 2oz. and measured 19 1/4 inches long. I had a 2nd c-section because Jules didn't want to move things along. They didn't want me to go past 41 weeks. Brooke loves loves loves her sister. She smiles whenever she hears her. She is very gentle with her- gives her kisses & pats her arms. Brooke is a fabulous big sister.
Sleeping through the night...Brooke is still working on this & Julia has definetly not mastered it at 4 1/2 weeks. Thus, Ryan and I are not the sharpest people in the mornings! Here are some pictures of the two of them... I'll add more as I get them.
xoxo,
Kadie

Up late...or am I up early?

It's now 5am...been up since 3:30am. This sleeping stuff is out of control. I vented her at about 10:30pm last night. Gave her some melatonin and she drifted off to sleep shortly thereafter. She woke up at 3:30am this morning and has been up and down since! I'm calling the Neurologist today to see if he has any further suggestions.
With that being said, I've got some new pictures! A misc. assortment. Some with friends, some from her birthday party, some from therapy. Here you go.

Brooke with her Grandpa DeMar and her Uncle Bill. She is in her Baskin Robbins dress.

Brooke looks a bit lonely in this pix, but I had to put it in here because she has on her birthday hat.

Isn't she so cute! This is Brooke on her grandma deMar's lap.

Brooke playing with her puzzle during therapy with her Occupational Therapist. Brooke's papa welter made put the knobs on this puzzle for her.

Brooke in her Birthday Swing in the backyard.

Brooke is working on "hands and knees" in therapy - both OT & PT. She is initiating this movement on her own as well. Sometimes you can just support her hips and she'll keep the straight arm thing going all by herself. We've always been hopefull that she'll stand and potentially walk, but learning to crawl would be a great first step - crawling requires a lot of cross-brain activity and thus makes for a more coordinated stander/walker. Other babies make this move look very easy...trust us...it's not!!

The last picture is of my friend Colleen and her daughter Ava. Colleen is also Ian's mom, from the fun run.

Lastly....we have a c-section date scheduled for the 27th! They moved my due date from the 4th of April to the 30th of March, thus c-section friday unless things move along on their own. We're not sure which is the best option - repeat c-section or vbac...there really is no way to know for sure. Just hope for great outcomes for baby girl #2 and me either way.

Maybe I'll try to go back to sleep now...or maybe I'll just suck it up, take a shower, and clean a bathroom or something.

Happy Birthday Brooke

Brooke asleep following the procedure. Mouth open and everything!

Yesterday was a long one. We checked in to Sutter Memorial outpatient GI clinic at 6:30am. Brooke was given anesthesia at 8:30am. She underwent a procedure called an EGD. They scope down throat - looking at the esophagus, stomach, and top of the small intestine. Dr. Davies, the GI that did the procedure, took biopsies of all three sites as well. They were looking for anything that could by structurally contributing to her gas issues. Fortunately, everything looked great. Unfortunately, we walked away with no answers. The night before was one of the worst we had in a while as well - just to add insult to injury. She did not sleep more than 2 1/2 hours the night before the procedure because the gas was so bothersome.





We were also scheduled for a small bowel follow through - put barium in through her g-tube and via x-ray, watch it travel through the small and large intestine. This rules out blockage, ect. We were unable to do this one though. They could not firmly establish the carb content of the barium. We weren't going to risk break through seizures or putting her out of ketosis. So...we reschedule.


Today is Brooke's 2nd birthday. Can you believe that!! We are having a very small family thing at our house today. Perfect for ms. B. I'll post pix tomorrow.

I'll make this quick, because Brooke is begging me to burp her from her nursery right now...She's doing quite well. The gas thing is still out of control. Not sure when we'll get to the other side of this one. There's always another side though. Now that I am off work for maternity leave (leading up to baby's birth, of course) I am in charge of nights. Every night, except for Friday and Saturday. And I get to sleep in on the weekends too! Ryan is in charge of formula prep in the morning, so I get to sleep all the way till 7am! That helps. I've got to learn how to nap though. Really gotta figure that one out. I need to take a lesson from my sister - or sister-in-law - or husband - I'm finding myself very jealous of their napping skills! When I nap, I wake up feeling hung-over and, for some strange reason, I tend to sneeze a lot. Isn't that weird.

Anyhow - Brooke is cutting her last molar - yeah yeah yeah!! I also found out that baby orajel swabs are okay with the keto diet!! That's huge for us!

Brooke is experimenting with all kinds of noises. Grunting is on the top of the list. She likes to put her finger to her nose (like it's a mustache) and snort. That's always a favorite when I take her into stores. Go figure. Here is a list of what she's working on....
ma
ma ma
mo
wah
bah
something that sounds like dada every now and again
We are trying very hard to turn the 'bu' into 'bubbles', thinking that bubbles is a much better way of communicating, 'hey. I've got gas. Get me out of this stroller and burp me' than the grunting thing. She has also learned how to smooch and spit - both are hysterical.

She is eating more solid food. By solid I mean a puree mixed with whipped cream and a side of canola oil. But, we're not complaining. We are seizure free, in ketosis, and eating solids. Good stuff. I did see something that I thought was a seizure last week - but haven't seen anything since, so I'm hoping it was just the gas thing.

Let's see what else - Oh...we got Brooke a Dora the Explorer electronic toothbrush that she loves. Ryan kept telling me that she would love it - I kept telling him he was wrong. Well, I will say it here (only because he never reads this) Ryan was right. She loves it.

Lastly - I got up from typing 5 minutes ago and helped Brooke burp - just in case you were wondering how she lasted so long.

Thanks for keeping tabs...Kadie

Brooke continues to cut teeth. We're thankful that coming in a few at a time now! It's going to be so crazy seeing her with a mouthful! Last night I vented her twice, but she was still just frantic. It took me a few minutes, but I finally figured out that it was her teeth. Gave her Tylenol and she slept from 10:30 on. It was great!!!!! Ironically, I'm at that point with my pregnancy where sleep escapes me. I toss and turn a lot. I may be tossing around, but at least I didn't have to get up and think in the middle of the night. Thinking alone can be difficult these days, let alone doing it in the middle of the night.

I had to work for a while yesterday so dad and Brooke had a date. In the middle of the date, Brooke had a major diaper blowout. It was apparently way beyond a bath and the two of them ended up in the shower. I came home and Ryan had washed Brooke's clothes, his clothes, bathed her, fed her, and started dinner. I think domestication suites him. He probably wouldn't argue with me if I suggested he stay home full time while I work.

What else is going on ... Baby Girl #2 is doing well. She was 4lbs. 6oz. at my 32 week ultrasound on Friday. Up a pound from two weeks before. Non-stress tests are going well. Sometimes I get stressed getting to them, but baby is not stressed at all which is the whole point of the twice weekly exercise.

I have a job. Pfizer lay-offs took place a week ago Friday. 50% cut - more in some areas. It was painful seeing some of the great talent that left the company. We are seriously streamlined now! I am working for my hiring manager again. I am thrilled to be working under her. I was also placed on a great team, so I'm grateful!

We are in the midst of a new nanny search. Rachel is moving to the Bay Area to be closer to her grandmother and aunt. She is leaving in 2 weeks now! Wow! We've had three great interviews. We'll see what happens. We are hoping to make a decision by the end of the week. Actually, we probably need to make a decision by the end of the week!

Seriously Overdue

Happy New Year! This should be an exciting one for our family!

Brooke is still seizure free on the ketogenic diet. She is doing so well. She can sit, with someone close by, for about 10 minutes at a time. This is tough for her, but she finally seems motivated to get upright and experience the world from a new perspective. She is rolling consistently. Ryan plays this tickle game with her that makes her laugh hysterically. She'll roll away from him onto her side/stomach and roll back when she wants to be tickled. A lot of laughing - sometimes to the point where the laughs get a bit too hysterical and turn into tears. The scene is great to watch. She's doing well with water therapy and her water therapist is now her Physical therapist at home once a week as well. The PT has put Brooke into a pediatric gait trainer (walker for little ones) two different times over the past few weeks. Brooke looks great in it and seems to enjoy it. I've only experienced it through pictures so far, so I look forward to the day I can get down to Easter Seals to watch Brooke walk!!

Only negative news to report is that the bug is not sleeping well - but what's new there, right?! This has never been her forte, except in the very beginning when we desperately needed her to wake up to eat. Because of the High Fat nature of the Ketogenic Diet, the meals and bottles she consumes create a ton of gas and bloating. So...she wakes at least two times, sometimes more, in the middle of the night with loads of gas. We burp her - she'll burp a few times - but we also have to 'vent' her, which is where we release air out of her stomach through her g-tube. It sounds crazier than it really is - perhaps it doesn't sound that crazy to all of you, or perhaps we're just so used to it by now. We basically just hook one of the tubes up to her g-tube and hold it in the air while the air bubbles travel out. Most of the time, there is so much air, that you can hear it release. You can also see Brooke relax as it goes. Thank goodness we can give her that relief. Needless to say, we're all a bit tired from this nightly ritual.

Pregnancy is going great. Supposedly, this nugget in the wings is Big. Do you hear that?! Big!! We are so thrilled that everything is moving along smoothly. I do have twice weekly non-stress tests that I go to and every other week I have an OB appointment and a Perinatology appointment where the perinatologist does an ultrasound to make sure fluid levels are good ect. Only 9 more weeks to go now! Baby girl likes to kick a lot, especially when Brooke is laughing in my lap.

Here are a few pics from Christmas.....

Brooke on her favorite Christmas Toy - her radio flyer pony - she's learning how to make it bounce on her own. We're watching the lobster coming out of the boxes on Christmas Eve

She likes tickles
The First Christmas Toy we had to assemble