Wednesday, December 31, 2008
Tuesday, December 9, 2008
Monday, November 17, 2008
We just recieved a generous supply of Mepilex AG samples from the Molnlycke Health Care company. The VP of marketing for the company found the blog post about how well Mepilex has worked for Cicily's g-tube site and he contacted me. I was in tears when I read his message, being so in awe and grateful that people care so much about my Cicily. Now I don't have to worry about the insurance company telling us one day that she's had enough Mepilex and they won't cover it anymore!
We also want to say thank you to Southwest Airlines. They have a voucher program for medical needs. I applied for tickets to fly to San Francisco to meet with the ear doctors and they gave us vouchers for Cicily's ticket and part of mine. I (definitely) fly SWA!!
As I've mentioned before, Cranial Technologies provided Cicily's helmet that she wore post- jaw distraction.
It's a wonder for me to be Cicily's Mom and see so many people take an interest in her well-being and be touched by her lively spirit.
Thursday, November 6, 2008
Rescheduled for Mon. Dec. 1st.
Nevermind - This surgery did not happen today. Insurance issues are mostly to blame. Hopefully we can reschedule it for next Mon???
Cicily will go in for surgery on November 17th to remove a granuloma that has grown in her trachea. A granuloma is a little ball of scar tissue. In this case, it's caused by the trach irritating the tissue around it and Dr. Mancuso will simply cut and cauterize it right off. He said it's quite straight forward. Dr. Mancuso will also perform another laryngoscopy and then we'll proceed one of 3 ways:
1. Cicily's airway will appear adequate and she will have her trach capped in the PICU overnight to see how she tolerates breathing without a trach in all different circumstances.
2 . Cicily's airway will still appear too small from the laryngoscopy and her trach will still be necessary and we'll come home.
3. Cicily's tonsils will be removed to create a larger airway (and get them out of the way so they cannot cause future trouble) and he'll see that her airway is adequate enough to cap her trach for a decannulation trial at a later date when she's recovered from her tonsilectomy (I'm assuming January).
We're hoping for scenario #3, eventhough it means she'd still have her trach until January at the soonest and till she's much older at the latest. I'm nervous about Cicily transitioning from a trach to no trach during the sick winter months anyway. I will update on the 17th or 19th!
Monday, October 27, 2008
Saturday Chris and I went to Palo Alto to hear presentations by the very best doctors specializing in microtia and atresia. Dr. Roberson talked about creating ear canals (atresia repair), which we found out Cicily is NOT a candidate for and we are not too sad about. Drs Reinisch and Lewin talked about Medpor ear reconstruction. Dr. Brent presented on rib graft ear reconstruction. It was all amazingly informative and impressive to hear and see what they can do! The major thing Chris and I both determined was that all of these procedures are very complex and we only want one of these doctors who do these procedures weekly to be working on Cicily.
Sunday we had patient appointments with each doctor where Cicily was able to come and we could ask specific questions. We saw all the doctors and were impressed with them all professionally and personally. After it was all over, we've decided either the Medpor ear reconstruction or prosthetic ears (not presented at this conference) would be our choice.
Medpor - For medpor ears, the surgeon takes a porous polyethylene implant shaped like an ear and places a membrane and skin grafts from the patients' head on top of the implant. The result is an ear that is shaped like an average ear and sticks out from the head like an average ear. The medpor ear can move when pulled on and the live skin can be moved around on the implant just like a typical ear. This surgical method requires one surgery for the right side, one for the left and possibly a third revision surgery to touch up any little areas. What's the downside then you wonder? While the medpor ears look amazingly good, they still do not have the exact appearance of a natural ear with all it's intricate folds and curves. I have pictures of some of these ears in a powerpoint format, I guess you can let me know if you'd like to see it and I can email you.
Prosthetic - For prosthetic ears, you have an anaplastologist take an ear mold (of Mom's or Maya's ear in this case) and create a latex ear using that mold. This ear can be painted to perfectly match the person's head. It is attached to the head using glue, implanted magnets or clips. This ear looks absolutely perfectly like a natural ear. The downside you ask? The ears last 3-5 years and then a new one must be made, the color doesn't "tan", and you have to take them off and put them on each day. This site has excellent pictures http://www.prosthesis.com/ear_base.htm
We would probably have either of these options done when Cicily is around 4-5. Both methods are rather costly and insurance typically does not pay for much, if any of the cost. I'd love to hear what all of you reading would prefer if it were your little ears in question, so please vote in the poll on the sidebar! Thanks
Tuesday, October 21, 2008
#1 Laundry Blood Tip
We've had a lot of blood on clothes around our house in the past couple months, but not a single blood stain! Here's the secret: salt. Pour it directly onto fresh blood or two day old blood and soak it in cold water, wash the clothing, and blood will be gone. We actually had a salt solution in our washing machine every day during the month of July.
#2 Scar Tip
Growing up I always put vitamin E on my scars to make them dissappear. Dr. Singh also recommended this practice and added massaging the scar to the regimen. I bought a bottle of vitamin E capsules and 3-4 times a day I poke one with a pin and massage a little into Cicily's jd scars. We'll see if it's just as magic as the salt in making things dissappear. :)
Tuesday, October 14, 2008
Jacob, Jana, Tyler (twin brothers and their Mom), Teresa, Deena (Teresa's Mom), Cicily, Faith
Robin, Faith, Janalyn, Cicily, Aunt Dorothea, Yasmin
Monday, October 6, 2008
Maya and I wrapped all of Cicily's presents in tissue paper this year, and she did a great job opening them all up.
Tuesday, September 30, 2008
Last night at home - about 4 hours post-op The pin sites were left open a little so they could drain. And drain they did! I tried cleaning her up before bed, but she screamed and almost passed out again, so I decided a little blood wouldn't hurt for one night.
Today - looking pretty good! Quite a lot of swelling in her cheeks. It reminds us of 9 month old Cicily. And yes, the right side of her face is not moving much. A little disconcerting, but should go away in a few days.
Friday, September 26, 2008
Saturday, September 13, 2008
On Monday September 29, Cicily will have the distraction device removed from her jaw. Dr. Singh will make a small cut in her cheek, closer to hear ears than her chin, to unscrew the distraction rod. Then the device will be removed from her bones and mouth. This will be an overnight stay at St. Joseph's Hospital. Cicily will then wear the helmet for another 1-2 weeks (yup- another) and then this jaw distraction will be over and done with! Very much looking forward to this surgery as it means no more wound cleaning twice a day!!!
Thursday, September 4, 2008
Waking up from a nap. Notice the diaper on the floor. Cicily is a fan of undoing her diaper lately and this afternoon she undid it and tossed it out of her crib! Fortunately I went in to get her out of her crib before we had any real messes. Playing peekaboo with the curtains.
Thursday, August 28, 2008
4 weeks of helmet and chin strap. Cicily now closes her mouth quite frequently, when her tongue is not in the way (which we're working on after talking to Dr. Glick on the consequences of tongue posture).
Side view after 4 weeks in the helmet. Her mouth is open, but look at the jaw angle. It no longer goes straight down.
She wears the helmet for 23 hours every day. We're on the 5th week now. It hasn't been the greatest 5 weeks. Cicily does quite well wearing the helmet once it's on actually. However, she cries and screams when it comes off and when it goes back on. We also had a dehydration episode that improved with a lot of water and Chris running to get some Gatorade at 3 am. We'll have another little celebration when we're done with the helmet in a few weeks!
Thursday, August 21, 2008
So on July 1 when the distractors were placed for her JD, Cicily's general surgeon, who initially placed the g-tube, Dr. Graziano, did a resectioning of granulation tissue on her stoma. After surgery it looked so much better! No more stomach lining popping out. It hurt Cis like crazy though for the first 2-3 weeks post op.
I also asked Dr. Graziano (another Dr. we would heartily recommend to anyone) to prescribe a new gauze to put around the g-tube site. It's called Mepilex AG, it's a foamy guaze treated with silver. I've put that on the site every day and kept it on all night and the site looks better than it ever has. There is not a trace of ooziness or blood anymore! It's so great to not have Cicily be able to pull on her g-tube and make it bleed and no more bloody pajamas (at least by the g-tube). So, spread the word to fellow g-tubers - Mepilex AG. It comes from a medical supply company and it really worked for us.
(Do you think this could score an advertising profit from the company? ;))
Wednesday, August 13, 2008
Have I mentioned what an amazing surgeon Dr. Singh is?!! I'm so glad she practices in the valley. And I'm glad I was only responsible for turning the extensions! (Especially because I didn't even do that very well.)
Anyway, maybe this guide book can help another family looking into jaw distraction and wanting to know more details.
Tuesday, August 5, 2008
We do have new orders for the helmet though. It'll have to be worn for probably the whole consolidation phase (about 6 weeks). But, that should allow her teeth to meet and her jaw to angle straight out as opposed to sloping down like it is now. We have high hopes she won't have a Jay Leno chin after all! We'll see. :)
Cicily no longer needs 24 hour monitoring and she's already taking advantage of her renewed freedom and getting into bathroom cupboards. Once again, we rejoice at the messes of our toddler!
Saturday, August 2, 2008
Cicily and Maya
The great smile. Playing away!
Playing with the gifts from Grandma Sue and Grandpa Norm from their recent vacation. Thanks!
The computer is in Cicily's room right now so we can watch her sleep and get something done too. She thinks it's quite cool to sit in the chair and move the mouse or pound on the keyboard!
Since the first time I took a picture of Maya and Cicily laying on Maya's pillow, Maya has asked for a picture of it each time.
Friday, August 1, 2008
I wanted to put up some progress shots because I was shocked when I looked at Cicily's before pictures this morning!!! I can't believe what an amazing difference this jaw distraction has made so far. I'm trying to remind myself that all babies grow and change in appearance because I kind of miss Cicily's "before" face. After the surgery to remove all the hardware in Sept, we'll post some real before and afters. We're still working on raising Cis' jaw up a little more so we'll see how that turns out.
*Dr. Singh's plan has always been to "overcorrect" Cis' jaw so she'll have an underbite (her lower jaw will stick out more than her upper). This will allow Cicily more of a chance for losing the trach, and allow her to grow into her jaw over the years and hopefully need less future distractions.
Wednesday, July 30, 2008
Cis gets to wear this helmet with chin strap for the next week to close her open bite. The distractors are growing her mandible at a downward angle, so this chin cup and the elastic tension will mold the soft new bone she's making to more of a straight out angle. This is pretty standard with this type of jaw distraction device. (However, usually they put elastics on teeth or a chin strap on a headband. Cicily's helmet is an experimental way to keep the chin strap in place on a toddler.) In the first day alone, I saw huge improvement- her mouth had closed a lot!
For anyone wondering, a real doctor did put this chin strap contraption together. Dr. Glick is the craniofacial orthodontist working with Cicily. We like her a lot! (of course! I don't really mention the very few doctors we don't care for on here :)) The chin cup is a Dr. Scholl's pad held in place with ortho elastics. Ingenious - and it's working!! After I added the flowers to the helmet, I talked to Chris' Dad and he mentioned it looking like Chris' football helmets- darn, I should have put a BYU sticker on there!
Cicily doesn't love the gear, but she's of course a huge trooper (Chris thinks a storm trooper ;))and got used to it after 4-5 hours. During her first fitfull nap after we got home from Dr. Glick's office though, I was nervous.
This is our last week turning screws and having Cicily wear any outer gear. Her screw extensions should be removed Tues. and the helmet also. Keep our fingers crossed! We're almost into bone consolidation (hardening for those who don't speak jaw distraction)!!!
Friday, July 25, 2008
The turning is becoming painful for Cicily. I try to turn while she is in a deep sleep for at least the night time turn, but when she's awake it takes Chris holding her arms/entertaining her in order to get them turned correctly. So turning is not the exciting occurrence that it was in the beginning; I think of it more as torture three times a day. It is worth it though. We can see a HUGE difference in the position of her mandible. Her chin looks like Jay Leno's to us! And, I can now see her uvula for the very first time. Something most people take for granted, but I've never been so excited to see a uvula- what a great thing!
From the laryngoscopy Dr. Mancuso saw improvement in her airway. He didn't have to thrust her tongue off of her trachea like before. He is optimistic that if we can achieve the full 30 mm of mandibular growth, then Cicily could be decannulated. So, we're a few major, precarious steps away from that still, but the optimism is nice.
I was attempting to get a picture of Cicily NOT smiling to post as a progress shot. She was not complying- she smiled for every single picture I took that day! She makes this all so much easier. This picture was taken Monday (5 days ago).
Monday, July 21, 2008
Tomorrow, July 22, Cicily will have another laryngoscopy to evaluate her airway. This is a "no big deal" surgery. Dr. Mancuso (ENT) will take a camera on a thin cable and put it down her trach hole and also through her mouth into her trachea. This will allow him to see how open her airway is now. Hopefully he can give us an idea of how many more mms we need to distract Cicily's jaw for her to able to breath without a trach.
Friday, July 18, 2008
Wednesday, July 16, 2008
Device description (in Mom terms): The mandible was broken on either side and then 2 metal plates were screwed into position on either side of the breaks with 4 tiny (3ish mm long) metal screws. A long rod is connected to these plates that extends from her ears to her chin. All this is inside her mouth, between her gums and cheeks. Then 1 1/2 inch flexible screws hang down on the outside of her jaw on either side of her trach. These screws are what we attach the screwdriver to and turn each day.
Living through jaw distraction: The distraction device is very delicate and therefore Cicily (or anyone else- including x-ray technicians!) cannot turn them (except designated 3 turns/day), pull them, or fall on them. Dr. Singh was quite insistant that any of these things could lead to device failure and ruin the distraction. Since Cicily is a wobbly toddler, she has constant 24/7 supervision to ensure she does not twist, fall on, bump, or pull her device. I stay with Cicily all day- we play lots of song games (patty cake, monkeys, etc.), read books, and do light physical and occupational therapy playtime. I also keep watch while she is napping as her habit is to stand up in her crib until she falls asleep and then roll over on her face while she's sleeping, neither of which she should do right now. Chris and Grandma DeEtte have taken turns staying up with Cicily at night to watch for these same sleep habits, give her medicine, suction, monitor oxygen levels, and ensure her trach stays humidified.
So far the distraction process is going better than I expected. Although we are nervous the space in her device is not the 11 mm is should be now, but we will discuss that more Fri with Dr. Singh. I have also heard recently that the screws become more painful to turn at the end of distraction, which I'm glad to know but sad because I was thrilled that Cicily seemed completely unaffected when I turned the screws. This process and time in our lives would not be as calm and relatively easy as it is without our amazing family and friends who have done everything from praying, sending positive thoughts, bringing dinners, watching Maya, and expressing love and concern. Thank you all so very much.
Thursday, July 3, 2008
I want to post pictures for those who are interested and hopefully to help other families get a better idea of what distraction can be like. Friendly warning though- if you are extremely faint hearted, you may not want to look closely.
A few hours post op.
Still intubated and paralyzed. If there's one thing I could possibly dislike more than the trach- it's the ET tube (being intubated)!
About 24 hours post op.
Finally awake and returned to the trach so she can have a good snuggle before zonking out again. Quite a bit of swelling in her face.
36 hours post op.
A good look at the distractor "screws/keychains/beard" as we fondly have been calling them. The sore on her lips is from cranking her mouth open so wide to position the plates and screws.
48 hours post op.
In the car on our way home from the hospital!!!
48 hours post op.
Home again and smiling. Can you get any more tough and pleasant than that?!
Certainly not back to her normal Cicily self, but MUCH better than yesterday!