Monday, December 21, 2009
Here's the recipe, this feeds Cicily for one day. As always, feel free to leave your own suggestions or questions.
1 1/2 -2 C. grains (barley, oats, rice, wheat, millet, quinoa, etc.) I do raw with 2 C. water in the Vitamix and blend for 3 or so minutes. I used to used the equivalent of already cooked grains.
2-3 servings of veggies (whatever we have around on that day)
2-3 whole fruits
2 T flaxseeds
2-3 t. olive oil, coconut oil, or any other oil
1 C milk
1 cooked egg, 1 serving of cooked meat we ate that day, or 10 almonds
1 t. salt
Sometimes I add 1/2 C plain yogurt, spices, beans, or whatever else I feel like feeding her
I first blend the grains, meat and water together for a few minutes, in the VitaMix blender, then add the milk and everything else and blend for another few minutes. With each meal I also give her 2-3 oz milk or water (to rinse out the bottle I used to measure her feeding).
Wednesday, November 25, 2009
Monday, November 23, 2009
She always wears all of her "daytime gear" to school: hearing aids, glasses, orthotics, and trach and g-tube of course.
I went to school with Cis the very first day to make sure everyone was comfortable with the trach and to see it all in action. Everything seemed to go well, so she's been going on her own ever since. She cried when I dropped her off for the first week, but now she goes with no problem. She's always so excited to tell her Daddy about what she did at school when he gets home. We're very glad she likes it and is gaining a lot of new knowledge, social learning, and therapy skills.
Sunday, November 1, 2009
Signing "walk" to let Ruby know to get the fun started.
After each lap around the arena, Cicily gets to climb off Ruby and tickle her nose. It's definitely Cis' favorite part of the whole deal.
Telling Ruby thank you.
Mommy's favorite part of hippotherapy.
Monday, October 12, 2009
Thursday, October 8, 2009
Cis' new HUGE horsey Grandma and Grandpa gave her.
Maya and A.J.'s hiding spot from which to jump up and yell, "Surprise Cicily, Happy Birthday!!"
Birthday party- opening presents from cousins.
Dad helping Cicily get some of the booty from the pinata, before it's all spoken for.
Cicily turned 3 years old last week! What an adventurous 3 years it has been! Cicily's packed so much into her 3 little years - too much in some ways and not nearly enough in other ways. I'm not sure how many times I've rejoiced that she was able to be here to celebrate her birthday with us. The night before her birthday as I sang to her before bed, I was crying thankful tears that we get to see her smile on her 3rd birthday.
Saturday, September 26, 2009
Thursday, September 24, 2009
Friday, September 11, 2009
Dr. Bonkowsky suggested 5 more tests in addition to the other ones her doctors here have already done to identify the leukodystrophy or what causes her hypomyelination. The good doc also enrolled Cis into his research pool to use her case in future research and inform us if there are any new developments.
So Cicily has "Treacher-Collins - like syndrome" and a currently unknown leukodystrophy. It's a novel combination and Cicily will show us all how they affect one another and what she can do inspite of it all.
Monday, August 24, 2009
So Maya and I had a discussion on how lots of people wear glasses and it helps them see and Cicily is really excited about wearing glasses. (She actually is, we tried them on at the store and she was loving it! Though it may have been all the helpful people surrounding and oogling her more than the glasses.) It sort of seemed by what Maya was saying that she just likes Cicily the way she is and worried glasses would change her Cicily-ness or something. But, by the end of the conversation Maya was saying she wanted glasses too. I told her maybe Cis could share.
Tune in in a few weeks to see a picture of Cicily sporting glasses in all her normalness.
Tuesday, August 4, 2009
It's also weird, when I heard Cicily laugh for the first time hearing her voice I cried. I loved hearing her voice every time she laughed with her trach out. In fact, she was just getting really good at it and really loud with her babbling and talking too. But, the first time I heard her laugh after her trach went back in, it was like seeing an old friend again. It didn't make me sad like I thought it would, it made me smile.
I'm also relieved each time she cries really hard because now I know with her trach back, she'll calm down and breath. Without her trach she'd cry really hard and turn purple. It's such a relief. Maybe the new perspective is just all the prayers you've all been saying for Cicily and our family?? If it is, keep them coming!
And for now I want to say - Welcome back trach, you are no longer my hated foe, but my ally. Thank you for allowing my little girl to hold on to her gift of life.
Friday, July 31, 2009
Friday, July 17, 2009
One of our favorite families! It'll be interesting to see if Jerome is happy or sad that Cicily has her "necklace" back.On Tuesday July 7th (almost exactly 2 months after it was removed), Cicily had her tracheostomy re-placed. We would have liked to give Cicily a real chance to learn how to handle her secretions without a trach and without being sick. She never really was 100% healthy the whole 2 months her trach was out. However, her episodes just got too severe and her chances were running out. Now we'll have to figure out what works to thin her secretions and she'll have to have her trach capped more and figure out how to cough and breath and not get scared with it all. (Damn that lack of white matter!) It still seems that the trach will be a temporary thing in Cis' life. Chris and I are actually quite relieved that it's back. It's funny, as much fun as it was to hear Cicily's voice when she laughed, I was also happy to hear her trach laugh once again.
Maya was of course the first to get Cicily to smile again! She even got a laugh out of her. One morning we brought Cis' dog Lucy for a visit. That plus Maya won lots of smiles!
Wednesday, July 15, 2009
We and Cis' doctors have theorized that she has these episodes because she's only used to coughing up junk into her throat and then out the trach it comes and with no trach as a trap door, the secretions get stuck in her throat and she gets scared and begins gasping. It's almost as much of a mental panic as it is her airway being plugged up by secretions.
After a bit of the usual treatment, it was clear Cicily was not bouncing back like normal. Chris left the room to call 911. By the time he got the phone and was back in the room, Cis had stopped breathing completely. We put her on the floor and Chris started giving her breaths with the ambu bag. I felt her chest and couldn't feel her heart beating. So after a second of both of us freaking out knowing we had to start CPR, we collected ourselves and I began chest compressions with Chris giving breaths. After about 10-20 compressions I started to feel Cis' little heart start to beat under my hands. So we stopped CPR and by this time the fire department was here. The ambulance came quickly after. They proceeded to intubate Cis and attempted to give her an IV (our carpet still bears the blood stain). Then we were off to the hospital in the ambulance. The nearest hospital to us is a heart hospital for older people. That's where Cis was taken because they had to "stabilize" her before they could transfer her to her normal hospital.
Cicily stable in the PICU at her "home hospital"
Chris and I both thought Cicily wasn't going to make it past this episode. When Chris went to ask our neighbor to stay in the house with Maya before we left in the ambulance, Chris told him he thought this was it. At one point before the CPR I put my hand on Chris' arm and said it's ok. I was very calm with the idea that if it was Cicily's time to go then she'd at least be free of her ill-functioning body and she could go chase after some ducks with her great-grandmas. I'm incredibly happy that Cicily did not want to leave us though. She amazes me at how gracefully and joyfully she accepts her calling on this earth.
Wednesday, July 8, 2009
Friday, June 26, 2009
So in July we'll be heading up to Utah. The doctor we're going to see is an MD and PhD. He uses zebra fish to study white matter. We're hoping he will get interested enough in Cicily to study her white matter, or lack therof rather.
We've decided to stay a few extra days and make a vacation out of the trip. That means two of our last three vacations have been planned for appointments with doctors. Good thing we have doctors to see, or we'd never get a vacation!
Random Photo: I gave Cis a tangelo from our tree that wasn't going to ripen. She popped it into her mouth and thought she was so funny!
Wednesday, June 3, 2009
Short story: Cicily coughed up too much junk and couldn't swallow or spit it all out, and it was blocking her airway. She wasn't getting enough air, and Chris called 911. Ride in an ambulance and 2 day stay in the hospital.
Long story: Cicily has been sick on and off (mostly on) since a few weeks pre-decannulation. She's done amazingly well during the day at coughing and swallowing her minimal secretions. However, at night or in the mornings, she coughs up lots of thick crap and can't do anything with it. (We're not sure how much this trouble swallowing has to do with her brain issues and how much is related to not eating. Unfortunately, it's probably a combination.) So last Wed night she'd been sleeping and coughing, but doing fine. Then I went in to change her diaper right before I went to bed. As soon as I put her flat on the floor and got her diaper off, she coughed and started fighting to breathe. Chris and I took turns suctioning her mouth with a Yankeur, giving her back blows (infant Heimlich), providing supplemental oxygen, taking her outside (sometimes the change calms her), and singing comforting songs. Usually these tricks work, and Cis calms down and starts to breathe normally. Tonight though she kept getting more and more scared and breathing less and less. After a few minutes (who really knows how long time passes as you watch your child turn various shades of white, purple, and blue) Chris called 911.
The fire truck arrived first. They proceeded to give her an O2 mask, ask lots of questions, hook her up to a pulse ox, and take her blood pressure. I asked about performing an emergency tracheostomy (I thought perhaps her tracheal granuloma had regrown and blocked her trachea). When the captain looked at me like I was insane, I told them to get us to the hospital immediately. (I hope I wasn't too rude, that's another thing you're not too concerned about as you watch your baby's color change.) They were concerned about getting a good blood pressure reading, but then the ambulance came and we quickly got on the gurney and headed for the hospital. In the ambulance they gave her oxygen and an albuterol treatment and that seemed to help some. In the ER the nurse (who was VERY good, by the way), suctioned Cicily's mouth with a 14 french catheter and got a TON of junk out of her throat. Then the RT set up a cool mist and oxygen mask, then gave her a steroid breathing treatment. After that she finally was with it enough to pull off her mask (she hates them). A few minutes later she was pulling away the tube I was holding up to her mouth and giving it to her Grandma Sue to use. What child wakes up in the ER after nearly dying and starts playing around and laughing with her grandma?? That would be our Cicily.
So then she spent the night in the PICU and the next day and night too. It was all very uneventful. We did get a full lesson from the RT in how to deep suction orally and they gave us a supply of 14 french catheters to take home. Our tiny 8 french catheters would be worthless in these situations. We now have an "emergency box" that we keep by her bed with anything we may need for future episodes.
A tip for parents with kids with trachs: I know there are tons of things that can happen to our kids and if we let ourselves, we could worry to the point of being incapacitated. But, we never thought we'd need to deep suction after decannulation and apparently nobody else did either. If I could do it again though, I'd definitely have someone teach us the technique and have larger catheters at home before Cicily came home without a trach. Ah the things we learn the hard way!
I couldn't help but swim in the pool and cry as I thought of last summer swimming with Cicily with hardware protruding from her chin and all the incredible things she's endured to be able to swim and put her head in the water. It was a joyous day!!!
Cis in her decannulation party swimsuit with her Grandma Sue
Tuesday, May 19, 2009
Sunday, May 3, 2009
Mom untying Cicily's trach tie for the last time. Cis was still in her jammies for the big event.
And it's out!!! Look at that bare neck! It's so kissable.
The only picture we have of her trach stoma. It closed so quickly! A thorough, unobstructed neck washing for the first time.
Monday, April 20, 2009
Chris commented a few weeks ago that Cicily's yeah is a great demonstration of her personality. Most 2 year olds can't get enough of the word no, and here's our sweetie living it up being a "yeah" girl. She's pretty much interested in trying anything new and she's happy almost all the time (exceptions are when she's in pain, when she's told no, and when Maya cries).
I recently pulled out all of Maya's old clothes that will fit Cicily for the coming spring, summer, and fall. It was a difficult thing for me to see all the cute outfits Maya wore at 2 years old and remember how when she wore these clothes she could run, speak in paragrahps, count to 10 in English and Spanish, knew what all the letters said, etc. I had to say a prayer because I wanted my sad, bitter feelings knowing those things may be a few years off for Cicily to go away. I did feel better and realized that both Maya and Cicily will get to the same destination, they're just on different paths. And I'm happy to have 2 girls on such different paths. I told Chris about it when he came home and he reminded me of what a friend also told me recently. -Cicily is an extremely happy girl. She doesn't care much about all she can't do yet. She tries so hard, and does SO well with what she has. When all is said and done, what more does a parent want than to know that their children are happy? I love our happy girl that makes so many people happy and is always ready with a willing, "yeah".
Monday, April 13, 2009
Fix - 3 month jaw distraction surgery
2. A granuloma grows in the trachea
Fix - surgery to excise the granuloma
3. Granuloma surgery is cancelled numerous times
Fix -reschedule and be patient
4. Infection inhibits granuloma surgery from being completed
Fix - reschedule, wait, antibiotics like crazy
5. A hole develops in trachea from granuloma surgery
Fix - wait 10-14 days for hole to heal
*new 6. Contracts pneumonia 10 days post-op
Fix - hospital stay with IV antibiotics, home antibiotics for 2 weeks and then cap again
Seriously, now it just feels like a comedy of errors or something like that! I am feeling more patient now though.
So Cicily's tracheal scar tissue removal surgery went well. Dr. Mancuso excised all the granuloma and stitched her little neck back up. Then she went to the PICU and her trach was capped for 24 hours. During the 24 hours of capping she was breathing EXCELLENTLY!!! Her oxygen saturations were completely normal while she was sleeping, eating, playing, everything.
There was a minor snag in the plan however. There is a leak in Cicily's trachea from surgery. When her trach was capped and there was more pressure to get air from her lungs to her nose/mouth, the air would leak out of the hole in her trachea and fill up her cheeks. She looked like a swollen balloon! So we took off the cap, swelling went down and Cicily came home from the hospital. Now we have to wait 10-14 days to re-cap and make sure she doesn't become a balloon again, and then we can pull the trach.
Mom's note: I'm very excited about Cicily breathing so well with her trach plugged. It's more than I expected from her at 2 years old. I can't describe the thrilling feeling knowing she could start to cry loudly, talk better, splash in the bathtub, not have to cough all the time. . . .
I'm also freaked out about not being able to suction the stuff she coughs up, hearing her breath differently, and other things. I don't know how to describe what a mixture of emotions it is.
When Cicily was in the hospital with her trach plugged, we made plans Tuesday night to pull out her trach Wed morning. Chris stayed with her Tues night and I went home to sleep. I'm in bed, almost out when the phone rings and Chris tells me it's not going to happen Wed. morning. I was tired, angry, sad. We have a plan in place now for decannulation and I feel good about it. I do feel like it will happen soon most of the time. Sometimes though, I feel like there have been so many curve-balls thrown that I don't know what to expect next. I try to focus on being grateful that her jaw distraction went so well and that she is capable of breathing without her trach now.
Saturday, April 4, 2009
Dad and Cicily driving around the pre-op floor. These cars are a staple of the pre-surgery routine. Cicily loves doing her rounds in her car!
Saturday, March 28, 2009
Friday, March 20, 2009
Saturday, March 14, 2009
It is also clear that Cicily never developed myelination. Her status can't really deteriorate, because as Chris put it, you can't get any worse than zero!
I also wanted to make clear that hypomyelination does not occur with Treacher Collins Syndrome - ever (that anyone knows about). However, we've always been skeptical that Cis has TCS as her genetic tests come back without the TCS gene change and her facial appearance is slightly different from classic TCS. The 3 geneticists we've seen feel TCS is still the best fit for her though, and we agree. I've wondered if Cicily's body may have some protein issues that affect both her TCS characteristics and her hypomyelination, as they both can be caused by proteins not working correctly. We're still doing the spinal tap on the 30th and the neuro-genetics docs are getting back to us on what tests they want to do - genetic, metabolic, fatty acid chains were mentioned.
We are very glad to be working with good neurologists and a geneticist who all seem to be very intrigued by Cis' mysterious, unheard of combination of characteristics. So far they are all doing their research to try and solve the puzzle. We hope they continue to be interested! Chris hopes Cis makes it into some medical journals as "patient A".
Wednesday, February 18, 2009
We still do not know why she is so deficient in white matter. Apparently it happens with certain genetic diseases or metabolic disorders. One of her neurologists has ordered a spinal tap to test her spinal fluid for various metabolic disorders and other cool, unusual things. So, we're anxiously awaiting the spinal tap and hoping it provides further answers. We're especially hoping the final diagnosis is treatable.
We'll continue to work with Cicily's 2nd and 3rd neurologists and see a 4th soon as they all seem to have different areas of expertise and hopefully together they can figure out our adorable, enigmatic little lady.
I was at first very nervous and upset about this new finding as it's affects can be pretty devastating. I actually feel good about it now though and have faith that in some way the many blessings Cicily has received will be realized. As I said before she was born, she'll grow up and be just fine, I just worry about what she'll have to go through to be fine. (I didn't have a tiny inkling of how much she would have to go through.)
Saturday, February 14, 2009
Friday, February 13, 2009
Theoretically this gives her a higher hearing threshold and some directional hearing. All I know is now she can hear me when I'm suctioning her trach and when I whisper to her at church. In fact, Cicily hears better than I do now! At her hearing test this past Tuesday she heard a very low tone that I didn't even hear. (So, good that Cis hears SO well, and kinda bad that I hear less than my girl with a hearing loss!) :)
Friday, January 30, 2009
Before pics were taken July 2008
After pics were taken Jan 2009