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