BAHA surgery a success

Well Faith's Baha implant surgery is done and everything went very smoothely. We started the morning early, leaving at 7:30 am and checking in at 8:15. We spent some time waiting where I overhead the front desk saying a sign language interpretor didn't show yet and so I offered to sign for the patient they were checking in - kinda fun to be able to help out like that!

The waiting room at PSL day surgery:

After talking with the ENT/surgeon, the anesthesiologist and nurses, we changed Faith into her gown and me into some kind of painter/space suit and I pulled Faith in a little wagon into the operating room. Then I carried her over to the table and they let me put the anesthesia gas onto her trach while I was still holding her. I told her it was medicine and would make her fall asleep and within seconds she put her head on my shoulder and her legs quit holding on. Then we laid her on the table and I kissed her goodbye. No tears for her or me so that was nice.

Fred taking Faith for a ride in the Wagon:

Me in my painter's jumpsuite just before surgery:

Then Fred and I walked to a nearby Pancake House and tried not to think about the surgery. We got back and shortly Dr. Pashley came out and said everything went fine and gave us home care instructions until we go back next Tuesday. Then we were taken back to see her and she was already waking up. They let me hold her while she came out of it and it took some time for her oxygen levels to stay above 90% so we could go home, plus they only gave her the tylenol codeine in small increments, so she was in some pain. We got home around 3:30pm and were grateful that Ryan took Anthony to school and picked him up afterwards.

Faith just waking up from Anesthesia:

Faith a little out of it but not wanting to sleep:

New Baha implant with healing cap on:

Faith had another first today - totally unexpected! She has been sitting on the potty now for a few weeks whenever I change her diaper and today she PEED in the Potty!!! What a day!!
She was pretty overtired and fussy the rest the evening but now she is sleeping soundly and we're gonna follow suit. I will try to post some pictures tomorrow.

Thanks everyone for all the prayers and good thoughts, it meant a lot to us.

Love,
Robin

Thanksgiving & Mimi & Papa's visit

HAPPY THANKSGIVING!

Sorry for the long delay in updating the blog, but my parents, Leah and Bill or Mimi & Papa to the grandkids, were here for a 10-day visit. It had been about 16 months since they had seen Faith (they saw Anthony in May when I brought him out for a weekend on one of my work trips) and although I've shown them a couple videos they really enjoyed seeing how much she has grown in person. They were very impressed with everything she is doing and I was so glad for both her and Anthony to get some really nice time with them. Unfortunately, just about everyone in the house was sick. I called Faith's pulmonologist and put her on antibiotics right away since she has her surgery tomorrow, but the rest of us just suffered through it. Fred and my dad had it the worst and that definitely limited doing very much while they were here. But we did get out for a few things, Mom and I went to a play downtown with my friend Janeen and a bunch of women she invited, called "Girls Only" that was very funny; then we went to Anthony's school play -- he was "Squanto" an Indian who taught the pilgrims how to plant corn (very cute); grocery shopping of course for the big meal which Mom & I cooked on Thursday; Mom, Dad and I went to see the movie "Australia" later in the week which was long but good; on Sunday we took the kids to see Santa at the mall and got a couple pictures and finally I got to go to lunch with Mom & Dad before taking them to the airport on Tuesday. Sounds like we were busy, but that was spread over 10 days and the rest the time we sat around eating, watching TV or reading.
So tomorrow is rapidly approaching for Faith's BAHA surgery. We have to leave the house around 7am to check in by 8. I think her surgery is supposed to start around 9am and take 2-3 hours. Then she goes to recovery for a couple hours and then sent home. So I will try really hard to post by tomorrow night with her status.

I better get to bed and get some sleep!

Love,
Robin

BAHA surgery date and Fred taking over ...

So last Tuesday was such an eventful day that it has taken me about a week to get over it and finally post. It started off with an appointment Tuesday morning with Faith's ENT to set up a date for implanting Faith's BAHA. Our ENT is very good, but also very outspoken. He does not believe that doing an atresia repair (creating an ear canal) is a good surgery to do, especially when a BAHA is a much less invasive surgery and can provide excellent hearing. While I do agree the BAHA can provide almost guaranteed successful hearing restoration down to 10 dB (about a whisper), the chance for Faith to have normal hearing without an aid on is worth it to me.

The reason I feel so strongly about it is because she cannot wear the BAHA in water or while sleeping or easily under a helmet (bicycle or batting helmet for example) and there is a higher incidence of kids with hearing impairments to get into accidents. Our ENT thinks kiddos wear their BAHAs while sleeping which I find impossible to believe because of the feedback it gets when anything touches it and all the parents I've asked agree. Some of the reasons our ENT doesn't like atresia repairs are because of it being a 10-12 hour surgery versus a ~2 hour surgery to implant the post for the BAHA; the risk of hitting the facial nerve causing permanent parallysis to one side of the face and because he thinks it usually looks bad either creating a hole larger than normal or being placed in a bad location. All of his concerns are valid and unfortunately there are a lot of surgeons doing this repair that have had very bad results. However we are considering only two surgeons for this surgery who are the best in the country and have had wonderful success. I have seen the results of their surgeries and think it looks very good, not at all in a funny location.

While it would be nicer to have a doctor who agrees with us on our plans, I still believe he is quite good at doing BAHA implants and I believe he will work with us if/when we do have her atresia repair to do the post op care instead of us having to travel back to CA or VA. So, we have set the date for her implant surgery on Friday, December 5th. We are now trying to decide whether to only implant the BAHA on one side or whether to go ahead and implant the posts bilaterally as a temporary solution until (if) we go ahead with the atresia repair and as a back-up if the atresia repair is not successful. We are waiting for the atresia reair surgeon in CA to respond to my email and discuss his recommendations in more detail. I thought I would be excited to be moving forward with getting her BAHA implanted and for her to have even better hearing, but I find myself completely dreading this surgery - I just keep getting caught up with the thought of her having screws in her head with a box attached to it.

That was just Tuesday morning. Tuesday afternoon was when the day got ugly. We had a new nurse start the week before and this was her 3rd day with us. We were getting to know her and she us. We had noticed a few little quirks that we wondered if they were warning signs that we were in for another bad match, like taking twice as long as necessary to feed Faith and not seeming to take our directions well even though she said, "please let me know if I am doing anything you don't want me to or you do differently." Nice words, but apparently not what she really felt. Fred had decided that with this nurse that he was going to be much more direct with how he wanted things done instead of just getting annoyed, so on her first day he decided to cut short the hour and 20 minute feeding (normally takes 30-40 mins) and show her how to do it faster, though we found out later that she was upset by how he handled it. On Tuesday I stayed home to take Faith to the ENT and spent some time sitting with the new nurse while she was feeding Faith. I was really uncomfortable by the questions she was asking about Faith and found myself not wanting to answer her. It's hard to explain because her questions seemed okay on the surface but for some reason I just felt like she was challenging me. Maybe the best example was when she asked me to leave Faith's room in the morning so she could get her out of her crib without her crying for me - other nurses would have just talked Faith through it (since I was asking her to get Faith out and not doing it myself).

The final straw came when we returned home from the doctor. It was past Faith's lunch time so Fred said to the nurse, "I will heat up her food if you will take her up and change her diaper" to which she didn't respond and so Fred turned around and said "Is that okay?" and she answered "fine." Fred and I both thought it sounded like she was annoyed. So we all got out of the car, Fred took most of Faith's stuff inside and the nurse got her suction machine, got out of the van leaving her door open, came around to where I was starting to undo Faith's seat belts and said something like "Oh thanks, those car seats are hard for me," which I thought was weird, but whatever. Then she just goes inside while I ask Faith to go close the van door that she left open and bring Faith in. By then the nurse was headed up the stairs without Faith, so Fred got irritated and went and picked Faith up and took her upstairs passing the nurse on the way. She says "Where's the Fire?!" which is when I had enough. I said "that was innappropriate" and then she asked whether we wanted her to stay till the end of the day or leave then. Fred said just leave. She grabbed her things and took off and I followed her outside trying to calm things down and end it on a more reasonable note, but she said some very accusatory things that I'd rather not repeat here. We called the nursing company and initially said we were done with training any new nurses (she was number 10) and that we just wanted to cut our hours back to whenever Rachel, Lisa or Maria (three of our 4 great nurses) were available. They agreed, but the next day I had a long conversation about the whole incident again and was very upset with how they handled it and that they seemed more interested in defending that nurse than understanding she was a bad fit for our family. By the end of the day, Fred and I decided to be done with the company completely.

Private duty nursing is not an easy job and it is extremely hard on a family to have someone in their home even though they are providing a needed service. Out of 10 nurses we had 4 really wonderful nurses who just got everything about it. They understood the importance of fitting into our routines and lifestyles, taking a backseat when I was around being her mom, giving Fred his space and asking for his direction when they had questions, and most of all, treating Faith with love and even Anthony with, well, with love too and allowing him to be a typical big brother to his sister and teaching him instead of trying to keep him away. For the other 6 nurses, most of them were good people who just didn't fit in with our family and although we tried to make it work with most of them, in the end you can't really create a good fit when it doesn't just happen on its own.

So now Fred is going to go it alone!! I know he will do just fine with this. He is more than capable of taking care of Faith medically and things are much easier now that she is older. There will certainly be times where it would be nicer if we still had nursing, like not having to take Faith out in bad weather when he has to take Dana and Anthony to school or go grocery shopping and there will be some new stresses with watching two little ones. Overall though, I think these new challenges will be a welcome change for Fred in exchange for getting our house back and you can already see Faith being thrilled to have Daddy spending more time with her! Thankfully too, both Lisa and Rachel (and hopefully Maria too) will stay in our lives. Lisa has already offered to watch Faith on occasion for us if we need help or some time off!

My parents arrive this Saturday and I am really anxious to see them. They haven't seen Faith since last summer (before she turned 1) so they are in for a real treat!!

Regards,
Robin

Yellow-Orange Skin and a Trach Incident

Thursday night was rather interesting at our house. First, when I came home from work I told Fred that I had been noticing that Faith's hands and feet were looking very yellow-orange to me and I was wondering whether it was anthing to be concerned about. I first noticed it about a week ago and wondered if she had spilled some of her food and it stained her hands. But I kept noticing it for the next few days and I started thinking about what else could cause it - liver failure was what I was most afraid of, but the whites of her eyes were still white. Fred agreed it was very noticeable after I mentioned it, so I decided to call the on-call pediatrician to decide whether it was something that needed immediate attention or not. She called me back and asked questions about the color of the whites of her eyes (sclera) and whether she'd had a fever. Finally she asked, has she been eating a lot of sweet potatoes or carrots? I said, yes and she said it's "Carotenosis" a harmless condition that happens when a person gets more vitamin A than their body can process and so it deposits yellow-orange pigmentation in the fatty tissue just below the skin. She said we just need to stop feeding her orange foods for about a week or so until it goes away! It was funny because the doctor had that thought and then thought Faith was too old for those kinds of baby foods, but because I'm blending baby foods for Faith's g-tube feedings, it was exactly it! So one lesson learned for doing a homemade blended formula: take it easy on the orange foods!

Later that evening after we got Anthony and Faith to bed, we were watching the Virginia Tech Hokies football game and watching Faith on the video baby monitor that we set next to the TV in the evenings. All of the sudden Faith started crying, but it was a very unusual urgent and loud cry, not something we hear her do hardly ever. We watched her for about 30 seconds or so wondering if she would calm down on her own but as it got louder I ran upstairs to check on her. I was assuming her g-tube button was bothering her again, but usually that only makes her wimper in pain for a moment. So I turned on her light to find out what was wrong and she had her hand up at her trach, holding on the "artificial nose" when I finally saw that her trach tube was completely out and laying in front of her neck. I yelled to Fred, "She pulled her trach out" and while I heard him come running up the stairs I quickly got it back in, without even thinking about what or how to do it. She quit crying and was breathing just fine. While it is a really bad event that could have turned into an emergency, it was strangely comforting to know that one, she wasn't turning blue after it being out for 1-2 minutes (although she was just starting to get that dusky color kids get from crying too hard) meaning that her airway is significantly better than it was a year or more ago and two, it was wonderful to hear her cry so loudly. I guess with the tube being out she was able to get a lot more air past her vocal cords. I think it was a little painful for her with the trach tube stuck in front of her neck, but I think she was crying more out of fear. Of course it is another reality check that she could still have a serious airway emergency just because she is trached and we can't let our guards down thinking that she is such a typical 2 year old in other ways.

Things are a bit calmer this weekend except for me having a miserable sinus infection and everyone else just getting over being sick or still having a touch of something. Fred took Anthony to a birthday party today so I wouldn't expose Keshena's new baby (with his own lung condition, PCD) to my infection. On Tuesday we are going to meet with Dr. Pashley to discuss implanting Faith's Baha (bone anchored hearing aid) and I will try and post right away, especially if we set a surgery date before the end of the year.

Hope you all are doing well and getting ready for a yummy Thanksgiving feast!
Robin

Election Day Excitement in our home

Our house is already a noisy place, but this election season raised it a few more decibles. With fairly opposite political views we've had our share of debates and Anthony has jumped in as well! He usually takes Dad's side and likes to ask everybody he talks to who they are going for. If you don't know or don't answer him, he asks whether you want to keep your change or not (Fred's teaching of the Obama's Change/"wealth redistribution" plan).

Anthony is also very busy now practicing writing and asking us how to spell everything. Saturday night he was up late making a card for "his best friend" Faith and asked me to cut a number "2" out for him and last night he was up late writing signs for the house "Yes McCain, No Obama" on one and a "Yes Obama" on another and then got Fred to help him tape them up on various bedroom doors this morning. He's instructed us that he wants Mom to tell him who won if her choice wins or Dad to tell him if his choice wins. It's quite hilarious to hear how interested in it he is. In fact, when we were in California Hilma and Bob took him to their church with them on Sunday and in the middle of the service Anthony blurted something about McCain, causing the mostly pro-Obama congregation to get a good laugh.

Whatever your beliefs are, make sure you get out and vote tomorrow (if you haven't already in early voting)!! We plan to stay up late watching the results trickle in and see if we have a new President by the end of the night or if it will turn into a long drawn out challenge with allegations of voter fraud or other issues. We'll see how long Anthony lasts with us. Whichever way it goes, it will be nice when our phone stops ringing and the commercials finally stop running!

Best wishes to all,
Robin

The Atresia Microtia conference weekend in California

So I'm finally going to post about our great trip to California for the Atresia Microtia Conference! Here's a link to my photoshow from the weekend: Palo Alto, CA trip photoshow (hit the back arrow to return to the blog when the show is over).

We flew out on Friday, Oct. 10th, on Southwest airlines (with Faith's and my tickets being provided by Southwest on a medical transportation voucher which we were so thankful to get from them -- please think about choosing Southwest for your next trip!) We went to the hotel where Fred's family met us, first his parents, Bob and Rosemarie, then Bob and Hilma and then Jim and Hue. It was a really nice evening and Jim and Hue generously brought us all dinner from a nice Italian restaurant.

On Saturday I went to the conference with Fred's parents and Hue. We listened to 5 doctors talk about options for opening up ear canals (atresia repair) and outer ear reconstruction (using either the child's rib cartilage or a synthethic material). It was very good to hear, especially already knowing that these doctor's are considered the very best in the country (according to many parents who have compared other options), maybe in the world for these two surgeries. That evening, Anthony went home with Bob and Hilma while we went to the pizza social at the hotel that I organized and AmeriFace Org paid for, where we got to meet a bunch of the other families attending the conference. We met Janalyn and Cicily (and Chris, Maya and Grandma), Jana and her twins Tyler and Jacob, Deena and Teresa Joy, Aretha and Yasmine, Lynn Marie and Jake and so many more plus all of their familes. It was just wonderful being able to meet so many people I've been chatting with from the Yahoo groups for Atresia Microtia, Goldenhar and Treacher Collins.

Online friends Jana and her twin boys Jacob and Tyler,

Deena & Teresa Joy, Cicily and Faith

Faith and Cicily - future best friends? We hope!

Faith is just 1 week older than Cic!

Janalyn & Cicily, Aretha & Yasmine, Me & Faith

On Sunday each of the families got to meet one on one with each of the doctors for just 10 minutes, but it was nice to meet them and briefly discuss our options. As I mentioned before we went, we found out that Faith is a candidate to have her ear canal opened (atresia repair) on one side and they confirmed this again and basically said we should focus on her jaw first and do her atresia repair when she is a little older (probably between 4-6 years old) just as long as it is before she gets her trach out so that we don't have airway issues and will be able to do her surgery in the surgery center instead of in the hospital.

The cost for the 3 major surgeries (one to open her right canal, one to reconstruct the right outer ear and another to reconstruct the left outer ear) is roughly around $50K each and we have no idea yet whether any of it or just how much would be covered by insurance. We have good insurance through my job, but I've heard a lot of stories about this not being covered and Faith's Medicaid (secondary insurance) is limited to services provided here in Colorado. So, who knows, that is a few years away but we may end up needing to do fundraisers to help cover the cost.

For Faith's left ear which she is not a candidate to have the canal opened, we are going to go ahead and have her Baha (bone anchored hearing aid) implanted within the next few months. We have an appointment with her local ENT on Nov. 11th to discuss it further and set a date for that surgery. The surgery itself is fairly minor, about an hour for them to implant a titanium screw in her skull (exactly the same as a dental implant) and I believe insurance will cover the full cost of that. After the surgery we need to let the site heal for three months before her Baha can be attached directly to her head, so in the meantime she will continue to wear it on a headband. Even though it sounds straightforward and I know it will be one of the easiest recoveries Faith will have of her many future surgeries, it stills makes my heart and stomach hurt to think about it.

Enough of that depressing stuff! After the conference ended on Sunday we drove up to Bob and Hilma's house for a nice dinner to celebrate Mom & Dad Kargoll's 56th Anniversary! It was a beautiful sunny day and Hilma cooked a great meal! Anthony had a great time spending the night there and terrorizing their two adorable little dogs, Radar and Bandit. That evening we went back to the hotel for our last night before flying home on Monday. It was a really good weekend between the information we learned at the conference, meeting new families and getting to spend a couple days with Fred's family as well. If you haven't already seen it, please enjoy the photoshow from our weekend! Just hit the "back" key if you want to return to the blog when you are done: Palo Alto, CA trip photoshow

Hope everyone is well and preparing for a haunting Halloween this Friday!!
Love,
Robin

Getting Ready for California

We are going to an Atresia Microtia conference in Palo Alto, CA this Friday to find out if Faith is a candidate for having ear canals created (atresia repair) and to meet a couple of the best doctors in the country for doing outer ear reconstruction. It's way too early to begin those surgeries, but it's a good time to be researching our choices and this conference is a great opportunity to learn about them directly from the surgeons. Plus we get to have a mini-family reunion with Fred's parents (driving up from San Diego), and his brothers and sisters-in-law, Bob & Hilma and Jim & Hue, who live in the San Francisco area. We will be celebrating Bob and Rosemarie's 56th anniversary while we are there too!!

In addition to getting to see Fred's family, we will also get to meet other families dealing with issues like us. I am especially excited to meet Cicily who is just 1 week younger than Faith and her mom Janalyn who started Cicily's Adventures blog and gave me encouragement to create Faith's blog and to start blending Faith's food. It's all the other families out there in the ethernet that have made dealing with Faith's issues so much easier by knowing we have never been alone in this journey and by having the benefit of learning from their experiences.

Prep for the conference and future jaw surgery:
In order to determine if Faith is a candidate for atresia repair, we had a CT scan done last Monday, Sept. 29th. There is a 10 point scale they use to determine if kids are candidates, called the Jahrsdorfer scale, named after a doctor who has been a pioneer in atresia repair surgery. We also need the scan for sending to the jaw surgeon (once we make that decision - see my earlier post on Jaw Reconstruction versus Jaw Distraction ). Since she needed to go under anesthesia for the CT scan, our ENT also tried to do a bronchoscopy, where he puts a camera tube down her throat to make sure everything looks normal so that when the day comes to decannulate her (remove her trach tube), that we know she has no other issues to affect her ability to breathe normally. He tried to do a bronchoscopy when Faith was about 6 months old, but could not get it past her tongue. This time he was able to see as far as the bottom of her vocal cords, but said that she is still an impossible intubation at this point and that she of course needs a jaw distraction to improve that. So, basically this served as a baseline tracking point to see how much space is gained from her first jaw surgery, whenever that will be.

Faith, as usual, handled the whole procedure without any complaint. In fact, the Anesthesiologist said she behaved like a 5 year old. :) We got Faith out of bed around 6am (about an hour before she normally wakes up) dressed and out of the house by 6:15 to check in at 7am. They took us back around 8am to prep Faith and they gave her a ton of stickers to keep her busy, which worked very well! I got to go with her into the CT room and hold her hand while they put her under -- I attached the tubing to her trach and I signed to her that it was medicine and that she was going to take a nap. She had no problems with it at all, and this is another one of those strange times when I am thankful for her trach. Many kids are absolutely terrified of going under by having a mask put over their mouth and nose.

I took a couple pictures of her day:

Faith busy putting stickers on her doll:

Faith showing off her 3-D butterfly sticker, I have never seen anything like it!

Faith's babydoll covered in cat stickers:

Faith still sleeping after the procedure:

CT scan results already and some GOOD NEWS!!!
So while I was busy typing this posting, I got a phone call from Sheri at the California Ear Institute (the host of the conference we are going to) to give me the results from reviewing Faith's CT scan which I mailed to them last week. I'm so excited I can barely contain myself -- Faith IS a possible candidate to have an ear canal made on one side of her head (on her right side which is more developed than her left). They graded her right ear at a 7 and her left ear at a 5, and they think the 7 may go a little higher following her jaw distraction. They recommended that we go ahead with implanting her Baha on the left since that will likely never be a good candiate for repair and then following her jaw distraction do another CT scan of the right and see if it goes higher on the scale. I believe even at a "7" they would be willing to do the surgery with a fairly high probability of success, but I will have to verify that when we talk to the doctors this weekend. I'm really excited about this because I was really expecting to hear, no she is not a candidate.

We now have a lot to think about because the surgery does not come with a 100% guarantee, in fact, I think I heard somewhere the grade on the scale correlates to the probability of success, meaning a 7 would roughly equal a 70% success probability. But, the thought of her having normal hearing, even in only one ear, means that she could hear while she is swimming or in the shower or at night when she is sleeping. While the Baha is amazing, it also has some drawbacks, including feedback when anything touches it (like a hat or laying on a pillow), maintenance of the surgery site for the rest of her life (but not unlike brushing your teeth or your hair regularly) and keeping a suppy of batteries handy and sending it in for repairs when it breaks - which we have been fortunate not to have to deal with yet. It is also emotionally hard to think of your child having a screw in their head with a small box attached to it and not worry about the teasing that may come with it. So, even though the good news is only for one side of her head, it is wonderful to know she has more than one option.

Well, this is way too long to expect you all to read, my apologies!!!

Love, Robin

Happy 2nd Birthday to Faith!

Sorry this is over a week late already, but we've been busy! Faith had a wonderful birthday week, starting with celebrating it 2 days early with her DHH (deaf/hard of hearing) toddler group where they sang and signed "Happy Birthday" to her and I brought in a cute little florescent pink cake! Rachel, one of Faith's favorite nurses is sitting behind her and her best friend at school, Mia, is sitting to her right. Mia made Faith a beautiful pink birthday card studded with jewels!

On Friday, her actual birthday, we had a pretty low key day and had cake and presents from us and relatives that evening. She loved all of her gifts, but I think the bunny rabbit hand-warmer from Aunt Rosie, Uncle Bruce and Emma, may have been her favorite - see how stylish she looks?

Saturday was her birthday party, which we had at the park near our house. The weather was perfect although it turned a little chilly near the end. My favorite was watching the kids play duck, duck, goose - Faith's first time playing. Faith is loved by so many people, but her cutest "admirer" is Colin (4 yrs old), one of Keshena and Dennis's 3 sons, who just treats her so adorably. It means a lot to us the way their boys have bonded with Faith and still like to call her "Baby Faith".

Duck, Duck, Goose!

Friends: Gracie, Colin, Faith & Aidan

Colin and Faith

Rachel and Faith

As you can see Faith had a great time and we enjoyed celebrating her birthday with so many good friends!

Love,

Faith & Mommy

Virginia Tech Rescue Squad - Scholarship

Dear Friends and Family,

I usually don't forward requests for support of a fund-raiser, but this one is near and dear to my heart and any contribution you can make to this would mean so much to me. For those of you who knew me in college (or have heard me talk about my college days), you know that I was a volunteer EMT with the Virginia Tech Rescue Squad (VTRS) for over 5 years. I loved doing it and I became a Life Member of the squad in 1992. I have often wondered if fate was involved in me taking that road in my life because of how well it prepared me to handle Faith's issues.

Since the tragic campus shooting on April 16th, 2007, the VTRS has become recognized as an extremely important student organization on campus and the University is supporting the establishment of an endowment to eventually fund full tuition scholarships for every member of the squad. Considering these full time students volunteer roughly 40 hours a week, it is a well deserved scholarship. To get the University's support on this, the Life Member Alumni Association has promised to contribute $50,000.00, half of what is needed to fund just one scholarship. For us to reach that goal, each Life Member has been asked to raise $150 by October 10th, so if any of you can contribute $5 - $10, I would be really grateful.

To contribute online, please follow instructions below, or if you prefer to mail a check to me make it payable to the "Virginia Tech Foundation" and I will mail it in.

Online: Go to http://www.campaign.vt.edu/ and select "Give Now," fill in your info and then in the Gift Information section please list it in the field marked "Other" as follows: Amount: $(5 or whatever) for "VT Rescue Squad LMAA Endowed Scholarship" If you donate online, please send me an email (rkargoll@comcast.net) that you did it, if you don't mind.

If you would like to know more about VTRS, check out the website: http://www.rescue.vt.edu/

Thank you!!
Robin

Faith's First Haircut!!!

Faith got her very first haircut last night!! I took her to LolliLocks, an adorable little kids hair salon that especially caters to little girls. We had so much fun and I spent too much money on hair accessories (oops, forgot to tell Fred about that!). Here's a video of the special moment:

Faith seemed to enjoy the whole thing quite a bit, especially afterwards when the store owner started bringing all these different headbands to check out (hence why I spent way too much!)and Faith got to climb on stools and check out the whole store. The owner was wonderful, I called to set up an appointment and told her that Faith has facial differences and that I didn't want to bring her when they were really crowded. She suggested I come in that evening when the store is usually empty and we just had a blast having the whole place to ourselves.

Some more pictures from our outing:

You can tell just how much she enjoyed the whole thing!! And I love her new bangs. :) She's all ready for her birthday party next weekend.

Love to all,

Robin & Miss Faith

Surprising result of new diet

It's been almost 2 weeks now since I started blending Faith's food. Very quickly I have tried a lot of new things (I'm not following the rules of one new food per week -- I've never been very good at following strict rules) and I've got it down fairly well now -- all except for adding grains. So far I've only tried oatmeal, but it is just too thick and clogs the tube - adding a fresh banana thickened it too much also. I really need to bite the bullet and buy the heavy duty blender soon.

The surprising result though has been that we think Faith's retching has stopped! I posted a couple weeks ago about finding out that Faith's Hiatal Hernia is back. When we discussed it with the doctor, we told him it mostly happens at the end of her feedings, so he logically suggested that we cut the quantity of each feeding and add one extra feeding time to maintain her calorie intake. Instead of doing that right away I decided to finally start blending her food first. Well, making homemade blended food is challenging to keep the calories per ounce as high as is in her canned food - so we actually ended up increasing her quantity from roughly 7/7.5 oz per feeding to 8/9 oz per feeding and she is handling it just fine. I never suspected the food she was eating could have been causing her to retch (she doesn't vomit because she has a Nissen that prevents food from going up from her stomach), but we are starting to think that might be exactly the cause. I am really thrilled to see this change for Faith!

Next Friday is Faith's 2nd birthday and it is so exciting to see just how far she has come! We are having her birthday party on Saturday at the park! This past year has been really wonderful with no hospitalizations (knock on wood!) and no serious illnesses. Next year could be much harder with some possible jaw surgeries, but we still really don't have any definite plans about that. She goes in for a CT scan on her jaw and ears on Sept. 29th and then we will send those to a couple doctors to get some final input before we choose which surgery we will pursue and plan a date for it. It's really scary to think about putting her through a big surgery whichever route we go, but we have to keep the end goal in mind, to open up her airway and get both her trach and feeding tube out (which may take more than one surgery to get to that goal).

I'll post new pictures next week after her party.
Best to all,
Robin

Homemade Blended Food Diet At Last!!

I'm thrilled to announce that I have now begun blending Faith's food from real food instead of using the canned blended food! This is something I have been wanting to do for over a year and at first I didn't get much support from the dietician we met with and then it just became a matter of not having enough time to plan it out. Her canned blended food, Pediatric Compleat, was a good starting point since it has natural foods like turkey, peas, green beans, peaches and cranberry juice in it, but it also had a lot of corn syrup which I really didn't want to be giving her. I found a great book written by a nutritionist specifically for G-Tube fed kiddos, called Homemade Blended Formula Handbook, that provides a ton of information and most helpful of all are the worksheets to create a balanced diet for the appropiate number of calories for the child's age and activity level.
I decided to start giving Faith whole milk for her morning feeding about a month or so ago and that has gone really well and made me feel better knowing that I could give her what we gave Anthony when he was her age. This weekend I realized I could easily start her homemade formula by using babyfoods that are already pureed and already in her canned formula. So I just did it, I combined green beans, peaches, milk, turkey and condensed milk for extra calories. She's had it now for two days and seems to be handling it just fine. Once I really get the hang of it, I'm planning to invest in a heavy duty blender called a VitaMix that places like Jamba Juice use. VitaMix offers some refurbished units at a medical discount for people like Faith, otherwise it is outrageously expensive.

Anthony
Anthony started pre-K last week, he goes T/Th/F from 9am -1pm now. I'm really looking forward to seeing what new things he will learn how to do. He is quickly becoming a pre-reader which I am really impressed by! He reads parts of words everywhere now, including the street signs (or asks for help if it's a new one) as we are driving places and still seems to remember every place he has ever been! Today, he got to bring the snack and something for Show & Tell, so I'm looking forward to hearing all about it when I get home.

That's all for now! Thanks for reading.
Robin

Faith's Hiatal Hernia is back...

We spent the day downtown yesterday for 2 doctor appointments and x-rays of her chest and upper GI. Turn's out Faith's hiatal hernia is back again, although the doctor said it is pretty small right now and he does not want to operate on it yet. Instead of doing surgery the doc wants us to manage it by decreasing the amount of her feedings and adding another feeding time (basically keeping her total calories the same but spreading it out more over the day). He said the surgery can hopefully wait 2-3 years as long as she is not having significant symptoms, which she is not for now anyway. I'm glad this can wait, I just don't want to put her through this surgery for the 3rd time right now. I'm not sure why but getting news like this really depresses me. I think it's because she already needs so many surgeries that adding one more to the list, even small ones like this are upsetting. I'm sure I'll bounce back in a couple days, but just needed to vent about it.
All for now.
Robin

Jaw Reconstruction versus Jaw Distraction

That's what I'm trying to decide between for Faith's first major jaw surgery. Because Faith is missing a lot of her left lower jaw bone (the ramus and the TMJ) most the doctors we have consulted with say that she need a bone graft first, where they would take one of her rib bones and basically shape it to where the ramus part of her mandible should be. Then, roughly a year after the bone graft, she would need a jaw distraction where they break the jaw and widen the gap between the break 1mm per day and grow new bone to add the length she needs to her jaw to open up her airway. But another doctor thinks she doesn't need a bone graft ever and that he can do a distraction now.

For the bone graft or jaw reconstruction surgery, the doctors we have consulted have varied opinions about when to do the surgery, NYU says around 2-3 years old, CHOP (Children's Hosp of Philadelphia) says around 5, maybe 4, which although it doesn't sound like a big difference, it is so close to when she would be ready to start school that we are not thrilled about waiting that long. They want to wait because they want the rib bones to grow large enough to make the surgery more successful. In addition to the timing, it is a pretty invasive surgery and there can be problems with the bone getting reabsorbed by the body and needing to be redone, the bone not being strong enough to distract a year later, and there can also be a risk of the bones fusing at the TMJ site locking her jaw shut (bony ankylosis). I'm also not clear whether they would try to create a TMJ (temporo mandibular joint) during the same surgery, but I have heard this is very difficult to do and I'm really don't know whether anyone has been very successful at it.

The alternative option is to do the jaw distraction first although there's only one doctor at Cincinnati Children's Hospital who thinks he can do it. I was actually given his cell phone number by another parent (Judy) who asked him if I could call him to discuss my options. I called him on a Saturday morning at home and he was very generous with his time and we talked for a good 30 minutes or so. He said that he believes there is no reason to try and create a joint for these kids, that they will create their own joint where the mandible meets the skull bone and that it is adequate even though it doesn't look like a typical joint. He agreed with my concerns that jaw reconstructions are not highly successful and there are significant risks is that surgery. He has found a way to successfully distract kids with missing jaw bone in a way that other doctors perhaps have not wanted to try yet or do not believe is possible.

I am planning to have further consultations with him to ask more about possible risks of this surgery if it fails, etc. but right now, I am leaning towards this being the lowest risk surgery that, if successful, could lead to Faith being decannulated (getting her trach out) much sooner than the traditional route. If it fails, I'm pretty sure we can still go down the route of doing the bone graft and will have not really lost anything, other than putting Faith through an extra surgery, but I don't think it would fail entirely. I think it is more likely that he just wouldn't be able to gain enough length in her mandible. From there though, it could be that she would just need another distraction to gain more growth and length, or she could need to have the bone graft after all.

Anyway, our next step is to have a CT scan done of Faith's jaw and head again to send that to both Cincinnati and NYU and then consult with them both again to make a decision. If we go with Cincinnati, it could be very soon (he said he has done this surgery on newborns, so it would probably just be up to us as to how soon we want to do it).

Just wanted to share what I spend most of my free time thinking about!

Thanks for reading and please SOMEONE post a comment!! It's very easy! :)
Robin

Feeding Clinic Evaluation

It's been interesting to see Faith's progress with food. We started over a year ago after she passed a swallow study (meaning they saw her swallow and protect her airway from aspiration) to offer her some baby food at meals to taste and she seemed to go up and down in her level of interest in it. Overtime we slacked off as Faith seemed less interested in putting it in her mouth instead of everywhere else. In May, while Fred was away I took Anthony and Faith out to dinner at Red Robin and gave Faith a kids cup to play with and a small piece of ice from my glass. She was having fun putting the ice in her mouth and then it disappeared - I asked her where it was and she pointed to her throat, so I figured she swallowed it (it was really small, like the half the size of a dime and melting), so I gave her more and a few more times she ran her finger down her throat indicating she had swallowed it again. She was really excited about it, so I decided to start ramping up her eating again and she really has become much more interested and I have been able to see her swallow some baby food although it is still extremely small amounts (at most, MAYBE about a teaspoon's worth). I decided to have her evaluated at Children's Hospital of Denver feeding clinic to see if there is more we could be doing to take advantage of this new event. Basically I wanted to find out if the "experts" had any ideas of new things we could be doing to help Faith start swallowing better and make sure we aren't falling any further behind on the oral eating learning curve that she will eventually have to tackle.

Before the appointment, I had to fill out and mail a bunch of paperwork with Faith's medical history, her abilities, and do a 3 day journal of everything she ate (via G-Tube or orally). Then, they asked us to bring her favorite cup, plate, spoon 2 foods she likes and something she doesn't like. They had us (Faith, me, nurse Rachel, and Kim - Faith's Speech Lang. Pathologist) sit in a room facing a one-way mirror and feed her so they could observe her behavior. She really impressed Kim, Rachel and me - she was really excited about everything, from getting things out of a bag, to actually taking a BITE out of a chewy granola bar which she has never done before (well, Rachel told me she bit a graham cracker the week before). Of course as soon as she bit it off she leaned forward and let it all fall out of her mouth because she can't really do anything with it, but we were excited just to see her so interested in it. Then she tasted some applesauce and tried to drink some water, with most of it just running out of her mouth.

Anyway, the experts came in afterwards and weren't so excited about her biting the granola bar - they were concerned that it was a choking hazard and that we shouldn't be giving her things like that. Well, like I said that was the first time I've ever seen her take a bite of anything! I didn't give it to her to try and eat it, it was just to show her level of interest in it and let her taste it. They felt Faith's interest in food was great but that we (I) might be pushing too hard. They felt like due to her jaw anatomy that she is unable to move food to the back of her mouth with her tongue and prepare to swallow it. They also didn't like it when I used an eyedropper to squirt baby food to the back of Faith's mouth to help her practice swallowing because Faith made some faces that she didn't like it. They basically said to only allow her to feed herself and to taste liquids or meltable solids until she has had her first jaw distraction/reconstruction.

For the most part I agreed with everything they had to say, although I felt like they were being overly conservative. I was glad to hear they didn't think Faith was missing out on some important therapy but I also felt like I might hear something very different from a more aggressive clinic. In the end, I'm just nervous about letting too much time go by doing very little if a more aggressive approach would make it easier for her in the future. I understand it's a delicate balance and that being too aggressive could cause her to have significant aversions when she is older, but I see her making progress and I want to encourage her to do as much as she is comfortable with.

Thanks for listening,
Robin

Another video to share

Just wanted ro upload another video to share with everyone. This was taken in May also, so I really need to get something more recent up soon.

Love, Robin

Faith Talking

So I've promised for months I would upload some videos of Faith, and now I finally can do it pretty easily (I think). Please see if you can view this and let me know if you have any problems. I took this video in May of her being VERY vocal with her Passy Muir Valve (PMV)on. The PMV is a one-way valve that forces Faith to exhale through her mouth instead of her trach. That means the air goes across her vocal cords and she is able to make sounds more easily than when the air goes out through her trach before it gets to the vocal cords (although for Faith anyway, she has been quite good at forcing air past her trach even without the valve, but this makes it much easier for her).

Dr's appointments and getting ready for Spain!

So we had 3 doctors appointment in the last week. The first was with a nurse at the pediatric surgeon's office for Faith's G-tube button which has had a sore (they call it a Granuloma) that has never healed all the way since the first surgery after she was born. The nurse changed her button to a longer one and treated the granuloma again with silver nitrate and sent us home with more silver nitrate to keep treating it for the 10th time. She did show me that I wasn't going as deep as she was or leaving it on there as long, so I'm hoping MAYBE this time we can finally be successful.

The second appointment was with Dr. Guarin, Faith's pulmonologist. She is my favorite doctor and very talkative with us. She took a mucus culture of what Faith coughed up (I guess it's the same as a throat culture for someone without a trach) and then talked to me about trying another prescription, Singulair, to see if that might finally knock out the secretions and morning cough/congestion Faith has struggled with off and on for months now. I had hoped to show off how Faith is able to breathe both in and out of her mouth now, but when Dr. Guarin went to listen to her lungs Faith became extremely upset and cried uncontrollably and signed "no" to her. So we had to give up on that.

The third appointment was this past Monday with the GI (gastrointestinal) doctor for a simple weight check. Two months ago Faith's weight had jumped from the 25th percentile to the 60th and they wanted to make sure it wasn't continuing at that rate. Well it was - she is now in the 75-95th percentile which made me really frustrated. I wish they had tracked her more closely before it got this high. Anyway, they want to lower her calorie intake from 1000 cals to 900. That's fine. I also plan to start trying to introduce to homemade blended food (if I can find the time to start doing it!) and Fred and I want to get her off her nighttime drip as she gets all tangled up in all her various tubes at night and there have been enough mishaps where something got disconnected and we find her in the morning sleeping in a soggy wet mess or it causes her pulse ox monitor to quit working and we have to deal with it in the middle of the night. No fun.

Today, Dr. Guarin called me back with the results from the culture she took last week, Faith has an "abundant" colonization of pseudomonas growing in her trachea. Not great news, but also not very serious. So she wants to take her off her humidifier at night and let her sleep with just the artificial nose (HME) on her trach, which is great news and she wants us to start another prescription for 2 weeks - a Tobi nebulizer treatment 2x/day. Luckily the nurses can do it while they are there, and Fred will only need to do it on Sundays (because I'll be in Spain).

Yes, I am off to Spain!!! I leave Saturday morning and I can't wait! Mom, Dad, Terry and Sonya arrived on Monday and Leslie, Steve and Ali arrived this morning (assuming no more cancellations due to weather). I will be there until July 2nd, and will get home on the 3rd, just in time to spend the 4th of July weekend at home with Fred and the kids. Wish me luck with the travel arrangements, I'm a little nervous about it all going smoothly! I'm not worried about Fred taking care of both kids at all, he's a pro at it now, plus he'll have extra help during the days from nurses and his parents who are coming to visit while I'm gone.

Will write again when I get home.

Love to all,
Robin

Test

Picture:

Faith at Ryan's Graduation party. She's wearing the little sweater Grandma Kargoll made for her, so cute!

Faith's Baptism

On Saturday, May 17th, Faith was baptized at Pax Christi Catholic Church. It was very nice and we were honored to have both godparents present (Michael Ranieri, godfather and Vicki Bayol, godmother) plus Grandma and Grandpa Kargoll, Aunt Rose, cousin Emma, and Lauren, Ryan, Dana and Anthony of course. Faith wore Heather Bayol's christening gown and it was just beautiful on her, she looked like a little princess! I will post pictures very soon, I promise! Ryan and Lauren video taped it and once I get a chance to watch it I will see if I can get it posted too.

We had a wonderful weekend with everyone in town and many sweet cards that arrived from others that couldn't be here in person (yes, MiMi, you're card arrived withOUT postage!! :). Thank you all for your kindness.

All for now,
Love,
Robin and family

Toddler Group for DHH children

Faith got to go to the toddler group for deaf and hard of hearing (DHH) children on Wednesday this week that I mentioneded in my last entry. Kim, Faith's speech therapist, told me about the group since she knew I was hoping to find a playmate for Faith who also signs. The group is perfect for her. It is led by an audiologist and a speech language pathologist and includes some physical therapy time as well. It is a weekly group that meets for 2.5 hours of interactive signing, language, reading, gym, reading, singing and dancing. I am so excited to have Faith get this extra time with therapists and other kids with issues like hers. It is a parent-tot class and most of the time the parents are there to help out but stay in the background as much as possible. When the kids go to the PT room, there is a session for the parents to cover learning objectives.

I took the day off work so I could go the first time and I wish I could go all the time, but going forward, Lindsay (nurse) will go with her and Fred or I will come in near the end of the group for a few minutes to get an update and take them home. Faith loved the class and was only a little shy. She wasn't used to having to sit down while they had story time and stuff, but she did pretty good only getting up a few times. She got to do artwork and go to a tumbling room where she got to swing and slide and crawl through a tunnel. She seemed to have a lot of fun!

Another nice thing about this is that it is covered by Medicaid. I was annoyed that my insurance denied it and I plan to fight their decision, but at least in the meantime or if they still refuse, Medicaid will cover it.

Anthony had his annual check-up this week too, and was a very good sport when he had to get 5 shots. OUCH!!! Fred took him and I heard he cried a bit, but afterwards he got a treat from the doctor's office and McDonald's for lunch! And today, Anthony got to come hang out with me at the office for the afternoon since I didn't have any meetings. He mostly watched TV, but also had fun talking to my co-workers, especially Claire!

Oh, I finally got my video camera fixed, so I might actually try to get the video uploaded that I promised around Easter.

Have a great weekend!
Robin

Sign class and other stuff

Hi everyone, hope you all are doing well and that spring is beginning to take hold - it was for us and then we had a big snow storm yesterday, but it's supposed to be in the 60s this weekend and 70s next week! Things are just chugging along for us; we had a busy week including having our signing class video taped to be put into a video for new families!
We got a new sign language instructor about a month ago (our previous teacher, Teresa, moved out of the area in November and we didn't have a new instructor till March). Our new instructor is Janice and she is deaf, which is nice for us in two ways - one, it exposes us to the deaf world more because we really notice how not being able to hear anything affects our communication with her and how much sound we don't even realize we pay attention to all the time that she can't hear. The other more obvious reason is that it forces us to sign if we want to communicate with her, and motivates me at least to try to sign more instead of always falling back on speaking. We were nervous about having a deaf instructor at first, but Janice is very good and it is going well. So the program that provides this early intervention for us wanted to video tape our class, and 10 other families' classes too, to make a short video to give to new families who would benefit from the service. Two women brought the camera and light and set up and video taped the whole class; they said they would send us the raw video before they edit it down to about a minute. Anthony of course was more interested in the camera than the class and one of the ladies kept him entertained while we went ahead with our class. Anthony ended up inviting her up to his room and "entertained" her with his toys and videos. At one point we heard him blasting one of his Little People videos and felt so bad for her! It took me a minute to realize Janice had no idea why we all started laughing and were distracted from class, which is exactly what I mean about taking for granted all the noise we hear all the time.
We always talk about how fast Faith is learning so many new things, but I wanted to share how much the rest of us are learning too. Fred told me just the other day that he now knows over 100 signs (off a list one of the nurses compiled of all the words Faith's speech pathologist, Kim, has been working with her on) and he is able to finger spell words during our sign language class. This is so hard for Fred and something he has had to push way beyond his comfort zone to do. I am so impressed with him. Then there is Dana, she is really amazing at this! For her, finger spelling is a breeze! She finger spells as fast as young kids today text message on their cell phones (yeah, she's a whiz at that too!!). The thing that is so impressive about Dana doing this is that she only makes it to our signing class once a month (we meet twice a month usually) if that, and she never misses a beat!

On another note, Kim sent me a flyer for a toddler group for deaf and hard of hearing (DHH) children organized by the Denver Children's Hospital. I've been wanting for Faith to have some playmates who also sign so this is perfect. The groups meets near our house once a week and I'm planning to take Faith next Wednesday and observe how the group works and how she likes it. If it goes well we will enroll her in the group. Fred will probably just drop Faith and Lindsey (her nurse) off each week and then either Fred or I will pick them up so we can get a progress update. I'm really excited to check it out.

Have a great weekend!
Robin

18 month check-up, Baptism in May and more ...

Yep, Faith is 18 months old now, believe it or not! Last week Fred and Lindsey (M-W nurse) took Faith to the pediatrician for her check-up and shots :( I wasn't able to go because I had meetings at work I couldn't miss. She weighed in at 25 lbs and 31 3/4 inches which puts her in the 60th percentile for weight and the 50th percentile for height (and 80th %ile for head circumference which is right in line with our family pattern of big heads!). To be honest I'm a little concerned that her weight went from 25th to 60th in just 3 months but Fred thinks its good since she will probably have a hard time keeping it on when she goes through her surgeries in the next year or two. I'll wait for her next appointment in a couple months to see if its still going up or stabilizing before I decide to worry too much about it.
We had a great time when Margaret, Maddie and Jared came to visit last week! Maddie and Dana spent all their time together, either in Dana's room, at the mall, or playing with Faith and Anthony. Anthony absolutely loved having Jared around who was great at entertaining him! Ryan and Lauren both got to visit with everyone as well and Fred and I especially enjoyed getting time to catch up with Mog.

On Easter, I got some nice pictures of Anthony and Faith and will try to get those uploaded soon. My video camera died that morning but not before I got some video of the kids finding eggs and singing to some Easter cards Aunt Vicki sent - they absolutely loved them (we all did)!!!

I'm in Philadelphia this week for work and will be back out in May - with Anthony! We will fly into DC on Friday, May 9th, very late, and then I will leave Anthony with M&D (thanks!!!) on Monday and Tuesday while I drive up to PA for work and to meet with one of the craniofacial surgeons at Children's Hospital of Philadelphia (CHOP) about doing Faith's jaw reconstruction. We will fly back to CO on Wed, May 14th, just in time for Ryan's 18th birthday on May 15th!

On Saturday, May 17th, Faith will be baptized and Michael Ranieri and Vicki generously agreed to be her god parents. Both of them as well as Mom & Dad Kargoll will make it out for that weekend! Vicki passed down Heather's baptism gown and it looks like it will still fit (says 6-18 months, but I haven't tried it on her yet).

The week after all that, Ryan is graduating from High School!! His graduation ceremony is on Friday, May 23rd and Karen is planning a bar-b-que on Saturday the 24th. Once the weekend is over, Fred will be headed to Las Vegas with his NY buddies on Wednesday, May 28th!
WHEW!!! Just when it might look like things will settle down, I get to go to Spain on June 21st! I can't wait!

Love always,
Robin

Happy Valentines Day!

Not much going on around our house - except for me traveling 2 weeks in a row (got home this morning and I'm exhausted!). All 5 kids are doing great and Faith is walking easily now (my neighbor described her walking as that "just got off a horse" walk - wide and bow-legged!). Fred and I are trying to plan a couple nights away for the two of us at the end of the month since Lisa agreed to watch Faith and Dana will watch Anthony (at her mom's). It will just be something local with plans to sleep in and nothing we have to do!!

I am also trying to figure out a good time to plan a trip to take Faith to Philadelphia this spring or summer (probably April or August) to be evaluated by Dr. Bartlett at CHOP for her jaw reconstruction (hopefully happening next summer - seems so close now). I had hoped to meet with him without bringing her - just have him look at her CT scans but I was told by the coordinator that I need to bring her - just not sure how to do it without Fred or a nurse since I was planning to combine it with a work trip (and a weekend in VA if possible).

In addition to that, I am planning to take her to LA in October for a Microtia Atresia conference with the best surgeons in the country for canalplasty (to build ear canals if she is a candidate) and for the outer ear reconstruction, just to learn more about those options and start thinking about what we want to do. Bob and Rosemarie (Fred's parents) are planning to join us in LA to help out and visit, which I'm very happy about.
So many trips this year with me going to Spain for M&D's anniversary and Fred's 2 Vegas trips (his annual guys trip and one for Lauren's 21st b-day) plus he is hoping to take Ryan and Dana to NY for a long weekend over the summer -- I don't know if we can really pull it all off!!! The good news is that I discovered that Southwest Airlines will provide us 2 free tickets per year to take Faith on medically necessary trips - how extremely generous. I'm trying to find out if any other airlines do it as well, I think Northwest MIGHT.
haven't been able to get any videos uploaded yet because my video camera docking station doesn't seem to work. Maybe this weekend I will take it in to Best Buy and have them replace it (I finally got a warranty on something, I should take advantage of it!!).
We love reading your guestbook postings - thanks for all the support each of you gives us, it means so much to us.

Love always,
Robin
XOXOXOX (for Valentines!)

Faith started walking!!!

Yep, that's right, she's officially a toddler now! She has been taking a step here and there, but on Thursday evening, January 24, Faith walked all on her own, about 5 feet. Since then she is walking more and more and she is really getting the hang of it. Although I'm excited to see her conquering new abilities, I have to admit, I feel the loss of her not being my "baby" anymore.
Even so, it helps us see her as stronger and being able to do more, so it should start giving us a lot more freedom to get her out of the house. This summer should be lots more fun doing things with both Anthony and Faith - like the park, the pool, story time at the library, etc. And it will be good for Fred and I to be able to start getting out on the weekends as a family instead of always splitting up and one of us staying home with Faith while the other takes Anthony somewhere.
Today was such a nice day that we took them both to the park - Faith got to go in the swing and down the slides, she definitely was having fun and Anthony got to bring a new toy that shoots a spinning disc high up in the sky.
Alright, I'm really going to try today to see if I can upload a video of Faith today!

Love,
Robin

Nurses come and nurses go...

In November we had to let a nurse go for the second time - it's always a tough decision, because there's always good things about every person and you hate to affect someone's job, but after having lots of little annoyances and then some major frustrating incidents we finally reached a point where it was too uncomfortable to keep her in our home, so we discussed it with the nursing company and they immediately took her out and found us a new nurse, Maria. Maria started around the beginning of December and immediately Faith became attached to her and we realized she was a perfect fit with our family - very caring, soft spoken and gentle, and also just good at knowing how to give us our space in the house (that is not an easily found trait!!). Anyway, on Tuesday the company called and said they needed to move Maria to another home. I was so upset and I just went on and on to the woman who called to tell me. But all to no avail, so today a new nurse, Lindsey, came to orient with Lisa (Faith's primary nurse). She's a fresh RN just out of school last spring, without any hands-on trach experience, so that part is disappointing, but she seemed very friendly and hopefully she will be able to learn the trach care stuff quickly and be able to handle an emergency - after all, we were taught how to do it, and she has all the nursing skills already, so hopefully this isn't a big stretch for her. Maria will work a couple more weeks for us and then Lindsey will take over in February.
We still have Lisa as well, who has been with us since March and is such a great fit. Lisa also had to cut her hours back with us from 40 to 20 to take another job with better benefits and pay, which we totally understood even though we were bummed to lose her for those hours.

We're hoping this works out well for Faith especially but also for us and especially Fred who is home all day and has to give up his privacy/freedoms. I just read a note from another mom whose son just got his trach tube removed and she was excited about gettting her privacy/freedom back in her home "to go to the kitchen in her underwear" if she wanted to!
Well, its late and I'm falling asleep as I try to finish this, so I better get off to bed and ready for another day of work tomorrow.

Love,
Robin

PMV trials

It was so cool!!! We took Faith to see Dr. Guarin yesterday to test out her new PMV (Passy Muir Valve) and she did really well with it! I did bring the video camera and Kim (speech language pathologist) was kind enough to video it for me.

First Dr. Guarin wanted to show me how to use something else - a new trach connector for giving Faith inhaler treatments which just happened to make a whistle sound when Faith tried it out. Faith thought that was pretty funny and wanted to keep doing it (we didn't tape that since it wasn't really why we were there, but too bad since she was pretty cute about it).
Then, after checking her pulse oxygen level, we put on the PMV and Faith acted like it was nothing, no big deal, didn't bother her a bit and then slowly she started realizing she could make more sounds than normal with it on and she just got louder and louder and louder and we were all laughing and Kim started tearing up!! She wanted to know why it wasn't making me tear up, but it wasn't the first time I had heard it -- I had been plugging her trach with my finger while she was exhaling for a couple weeks now and I knew how much of a difference it made. I was only afraid my expectations/hopes were going to be too high, as I have heard many stories about other children not tolerating the valve and blowing it right off. Faith loved having the valve on and being able to play with her voice and was upset when we took it off. We are only trying it out twice a day for 5 mins the first day, 10 the 2nd, 15 the 3rd and then we can move up in 15 min increments, to 30 mins, 45, etc. But I think within a couple of weeks Faith might be wearing the valve full time! We did the second 5 minute trial last night at the dinner table and Faith loved it again and we realized she is going to give both Fred and Anthony a run for their money on being the loudest Kargoll in our house! How crazy is that when you remember she couldn't make any sound for the first few months of her life!! We will never forget her early Dolphin sounds and luckily those are caught on tape as well.

I will have upgrade my Babysite account so I will be able to post videos!! I promise to give that a try this weekend.
By the way, you all are way to kind about my website skills - this whole website format is completely provided by Babysites and I'm just adding the text and pictures. This is so easy, all of you could do it - and it's free (until I upgrade anyway, but even that is cheap - just a small annual fee).

Love from all of us!

P.S. I wanted to share something very special about this Passy Muir Valve - I learned that it was invented by a young man in his 20s, a quadriplegic, David Muir, who suffered from muscular distrophy and eventually had to be trached and ventilated. His story is truly amazing, please check it out on www.passy-muir.com and go to the about us section. He is another amazing example of how people with severe disabilities in life have a capacity to succeed in life that makes me certain that Faith's disabilities will also become her strengths.

Cardiology appointment went well today

We got some great news today - Faith's two tiny holes in her heart (VSDs or Ventricular Septal Defects) have closed! This is actually very common for babies to be born with VSDs and for them to close on their own within the first year of life. The cardiologist said she has no cardiac issues now and we do not need to see him again unless something arises that we are concerned about.

The nice thing about Goldenhar Syndrome is that it is not progressive or degenerative, so there shouldn't be new health issues that weren't there when she was born (although there's a chance that we haven't found everything yet, like we haven't had a full spinal x-ray to see if she has any spinal defects - but nothing is suspicious at this point).

I can't wait for our appointment with the pulmonologist tomorrow to try out Faith's new Passy Muir Valve (PMV) on her trach. I'm thinking about bringing the movie camera to capture how she responds! Will definitely post again tomorrow night.

Until then,
Robin

"HI!"

That's what Faith SAID yesterday!! It's her first spoken word. She's been making a lot of sounds lately, especially just screaming to hear how loud she can be, but on Saturday when we had a speech therapy session with Kim (speech language pathologist) we talked about working on that being her first word since the "i" part of Hi is a sound she makes frequently and easily and really I've thought she has made the sound "hi" before, if you are willing to consider something close. Speaking her first word is one of the goals we set on her "service plan" during this 6 month cycle that ends in March. (Faith is evaluated every 6 months for developmental progress/delays and goal setting for the support services she gets through the state).

I wasn't home when she did it yesterday, but from what I heard the big difference is that she meant it as "hi" and was waving while saying it. When I got home, Fred said "Faith has something to TELL you" but she would only wave or sign Hi to me, she didn't say it again - you know how kids won't show off when you want them to!

Anyway, this is so exciting! Faith has become so vocal lately, she likes to coo and scream and I even heard heard singing along with a musical toy once recently!! :) I have tried covering her trach while she is exhaling with my finger and she will vocalize for the entire length of her exhale instead of more bursting noise she does on her own. So, our next step is to get her a "Passy Muir Valve" (PMV) that is a one-way valve that only allows her to breathe in through her trach and then exhale through her mouth. I'll certainly post an update and a picture of her with it on once we get it and start trying it out.
I have heard other parents say their trached kids can speak fine over their trachs with the PMV (although many have oral anatomy issues like Faith's jaw or cleft palates that make certain sounds difficult) and I'm starting to believe Faith will start making huge strides over the next year.
Changing topics, Anthony was sick yesterday - he seemed fine in the morning, and it was his first day back at school after weeks of being on break, but I guess shortly after he got to school he told them he was tired (and that he got up really early - but he does that every day!) and cold, so they let him go lie down in the "cozy corner" on a bean bag with a blanket. By the time Fred got there to pick him up he was sound asleep and running a fever. It got up to about 102 in the evening, but it broke overnight and he seems fine today. Sounds silly, but I really enjoyed getting some quiet cuddling time with him!
More later, hope everyone's week is going well!
Robin