Thursday, January 24, 2008

Upcoming Surgery - Cleft Palate Repair (Palatoplasty)

After months of calls, we've finally succeeded in getting Cicily's next surgery scheduled. She will have a cleft palate repair and another laryngoscopy/bronchoscopy done on Tuesday Jan. 22 at Phoenix Children's.

Cicily's craniofacial plastic surgeon, Dr. Singh will be repairing her palate. Dr. Mancuso, Cicily's ENT will be performing the laryngoscopy/bronchoscopy to evaluate if her airway has improved at all.

As previously mentioned, Cicily's cleft palate is very wide. (She really has no roof of her mouth- you can see her nasal bone- it actually looks really "normal" if you didn't know what a palate should look like!) Dr. Singh will basically have to work magic to take enough existing tissue from her palate and stretch it, pull it all together and stitch it up to give her a roof to her mouth. This is pretty much a "one shot" deal. If the new palate forms any fistulas (holes), then it will be harder, if not impossible to repair it another time due to scar tissue being nearly impossible to stretch and work with. Therefore, our family would greatly appreciate prayers for Cicily and her doctors.

Surgery Report
The surgery went quite well and was much shorter than the expected 3 hours. Although, when you're waiting in a surgical waiting area, it's never short! Dr. Singh said she was able to get plenty of tissue for her palate. She did not expect to have any fistulas form. She did say there was a good chance of having to elongate her palate with a velopharyngeal flap (yeah, I had no clue what it was 6 months ago either - Wikipedia's a great friend!). But, that wouldn't happen until she's 4-5 and only if her speech is sounding too nasally. We'd just lump it in with another surgery, I'm sure she'll be having one around that time! Cicily's mouth looks completely different inside, her palate is so LOW and it's FULL of stitches. The day after surgery she kept moving her tongue all around trying to figure it all out.

The laryngoscopy showed that her airway has improved some more, but not phenomenally more. So, Wed we had a 3D CT scan done (a detailed x-ray of her whole head) and Dr. Singh will evaluate that to talk to us about good timing for a jaw distraction process.

Cicily's been an absolute champ of course. We stayed in the hospital one night and came home the next day. She's hardly required any pain medication, I keep giving it to her "just in case". Today Cis just wanted to play like normal with the exception of wanting Mommy snuggles a little more frequently. She learned really quickly how to play straight-armed, and it's hardly bothered her to wear her arm restraints.

Thanks so very much to everyone praying for and thinking of Cicily.

Day after surgery.
I removed her arm splints for some patty-cake playing. She started signing patty-cake in the pre-op room and remembered it through her sedation and operation until the next day!
(I was going to say the picture looks worse than it really was, but it doesn't, in some ways it actually looks better. ) BTW- if anyone is in need of a hospital gown, we were allowed to keep this one, in addition to 2 new stuffed animals Cicily's beautiful personality scored!

Saturday, January 19, 2008

A small tribute to the doctors

She has around a dozen of them that she sees regularly. Most of them are stellar physicians. And some of them we think are so amazing we'd like them to look after her all her life and have given prayers of thanks that they've been there when Cicily's needed them.
The first one was Dr. W, who along with Drs. F and M arranged the most beneficial way for Cicily to be brought into the world. Dr. W cared for her and our whole family and ensured we were all adequately set up for her life. Then there's Dr. M who at her birth told me that he and the other doctors were praying for us. Dr. M has re-arranged his schedule to help Cicily on 3 occasions. Dr. S was next to come into her life. In our opinion, she is a brilliant and capable surgeon. At the last appointment she told Cicily she looked forward to getting a big hug from her someday. Her pulmonologist and pediatricians have been wonderful to work with as they try to figure out what medications to give her to keep her healthy and non-antibiotic resitant.
It's so amazing to think there are so many people out there - doctors, therapists, nurses, medical assistants, family, friends, strangers - who are looking out for our Cicily and wanting to make her life as great as it can possibly be. It's been my pleasure as her Mom to be able to "share" her with all of them and you.

Wednesday, January 9, 2008

Cicily's Shakes (food)

People seem to be very interested in Cicily's eating and it's a bit of a new hobby for me, so I'm going to explain what she eats. I've explained her g-tube and pump situation and how she was eating breastmilk until 10 months old. But, now she's over a year and should be eating normal solid food. How does she do this you wonder when she can't swallow very well? The standard answer is to give special medical formula for kids (like Pediasure). This formula consists basically of water, vegetable oil, corn syrup, milk, and added vitamins. I just couldn't imagine mixing up a shake with these ingredients and feeding it to Maya every day and feeling like she was getting adequate nutrition, and I feel the same about Cicily! So, I've gotten into mixing a very thin shake of all real food for Cicily that we can send through the tube. It's called a "blended diet" and it's sort of a movement in the g-tube community. I've joined an online group to help get ideas and trouble shoot.

So here's how we prepare Cicily's "shakes". Start with a Vita-Mix blender- an absolute must have for a blended diet. It's a commercial grade blender that's downright amazing! I cook whole grains - barley, quinoa, wheat, millet, oatmeal, etc. Then every day I toss the grains, vegetables, fruit, meat, flaxseed, olive oil, coconut oil, and water into the blender and blend for 3-5 minutes. The result is a wonderful, thin shake that we can feed to Cicily 4 times a day via g-tube! She's the healthiest 1 year old I can imagine!! No processed toddler foods like mac and cheese or sugary ice cream for this girl! She eats great foods on a daily basis like: yogurt, almonds, spinach, flax, broccoli, whole grains, blackberries, beet greens, squash, salmon, etc. My Grandma would be so proud! Sometimes I even get to pick her food fresh from our own garden. (I'm sounding a little extreme now :)) Chris and I always joke that we should start drinking our own "Cicily shakes" and that when she gets rid of the g-tube and starts eating chicken nuggets and other normal foods, she's going to get sick.

Like I said, it's a bit of a new hobby for me to see just how healthy I can make the food I pump into my baby. If anyone has suggestions/ideas of super great foods or combinations of foods- let me know!!!

Wednesday, January 2, 2008

Photo Album - 14 months

Tummy Time - As you can see, Cicily's not a huge fan of the tummy time thing. She typically moves around, cries a bit, manages to shirk her BAHA, and then if left long enough (20 mins) she falls asleep! Although this last week she has actually started enjoying being on her stomach. That is, if she feels she got there on her own accord and wasn't forced into it!
More therapy poses! Cis loves sitting on this step stool and playing with her table. The first time she did it she stood right up on her own and had the hugest smile! She was so proud of herself!!
Hohokam girls
Hello, our Daddy's an archaeologist and for fun on weekends we go to museums and archaeology sites. (This is at Pueblo Grande in Phoenix)

Cicily LOVES her new hoodie towel! Thank you Lois!!!

She's getting into mischeif - YAY!!! Cicily was riding her bike and rode on over to the tree to play with a few ornaments. I know some moms think I'm crazy, but when you work daily on getting your child mobile, having them move and get into things is a fabulous accomplishment and a happy day!

(Oh, this is after she tipped her bike, but she remained happily playing on the ground, under the tree.)

You actually can't see it too well in this shot, but this is Cicily's first pony tail. I think we could have actually gotten her long hair into a pony the day she was born almost, but this is the first time we attempted it.