Lots & Lots to Say

Jenna and Jilly's bobos say it all. :)

Hey Everyone,

Well it is Friday, thank goodness...and Jared is home with me today! He took the day off and I am really excited. We hardly ever get to spend a day together. Our only day off together right now is Sunday and Sundays are just really busy. We have church and then Jared heads off to the county adult jail to meet with his Sunday group of guys for a Bible time. Then he either has to mow the yard or we go and visit family...so it usually isn't a day we can chillax as a family.

Jenna is starting to sit up with little arm support. She doesn't stay very long before falling over but it is progress. I don't know if Jilly can do it. She is only interested in standing, I can't get her to sit!

Anyhoo, lots of big plans today. Fun with the babies being on the top of our list, followed by possible lunch out, we have to run an errand to Target and get a baby shower gift for our friends. Then later my mom is going to come over so we can have some very rare grown up time...we are going to go to a late movie. I am really hoping that by the time we leave the babies will be asleep. That way it isn't too stressful, as sometimes nighttime can be.

These days we feed the babies their bottles and solids all between 6 and 6:30-6:45 ish. They play for about 15 or 20 minutes, then they get a diaper change and their PJs on. We settle on the sofa for a Bible Story from their Kid's Bible and then it is off to their cribs for nite-nite land. Sometimes the babies are asleep by 7:45 and sometimes, like last night, they aren't asleep until 8:30ish or later.

Jenna isn't crazy about her dinner

Maybe I should feed the rest of Jenna's dinner to Jillian since she has taken to eating her bowl after she is done. :)

So other than just regular life, not much is going on...yet. The girls keep getting bigger and bigger as they always do. They are super cool now, by the way. See their shades? :)

Jillian and Jenna play it cool for a car ride

I can't believe they keep them on but they do. Of course once they figured the sunglasses block that terribly, icky sun, they were more inclined to keep them on.

So I'll give you a heads up now....the next few weeks and months are going to be really busy for us. The ball has finally started rolling in regards to Jillian's cranial band (helmet). You might remember that we went to visit Cranial Technologies several weeks ago and they deemed Jillian a good candidate for treatment. We found out later that day Cranial Technologies wasn't part of our network of providers with our insurance company (not surprising). So we went to visit Hanger Prosthetics & Orthotics a few weeks ago. I didn't like this company as much. The Cranial Technologies' therapists were far more professional and the office was more advanced technology wise. Not to say that both offices weren't extremely helpful and courteous, because they were, but I just felt far more at ease with the first company. Plus, everything I have read about them on the Internet makes Cranial Technologies sound like a great place that gets the treatment done right the first time. They make sure the bands fit exactly perfect so that you get the best results.

But, since Hanger was in our network we had resigned ourselves to use them...or at least until our insurance company denied Jillian's treatment. Also not surprising. They denied our treatment request because Jillian's asymmetry was 3/10ths of a centimeter off. They require the measurements of her flat spot to be at least 1 cm different on one side than the other and Jilly's measurements were .7cm. OMG!!! What good is having insurance I ask? We won't go there though...Dad! :) Tee Hee.

But, the positional different of Jillian's ears is a big deal for us. We have noticed that her sunglasses don't stay on like Jenna's because one of Jillian's ears is so much farther forward on her face than her other. That makes me worried later on if she has to have glasses (which is highly likely since I am officially legally blind with out corrective vision and she was a preemie which puts her and Jenna at risk for vision problems, especially since they were assisted with their breathing for a little while--something about the CPAP and the blowing of oxygen that puts them at risk for ROP, which is why we see an eye specialist for the 2nd time in November, for preventative and detection reasons) we won't be able to get the glasses to fit properly--which is something the therapist at Cranial Technologies warned us about in regards to non-treatment of her plagiocephaly (medical term for flat spot).

The bummer is that the treatment is very expensive with no insurance at a whopping $3,600 for the consultation, measurement session, making of the band, fitting session and all therapists sessions thereafter to track her progression (sessions are every one to two weeks). But, we are blessed with wonderful families and some of our family (I am not sure they would want me to publish their names on my blog) have generously given us the money so that we could not only treat Jillian's plagiocephaly, but also use the company we felt more comfortable with, Cranial Technologies. I know they felt, as did we, that it was medically necessary for Jillian to receive treatment now so that later we wouldn't have to worry about non-treatments risks like vision problems, chronic ear infections, sinus infections, TMJ or lock jaw, etc. Not to mention the cosmetic shape of Jillian's head being something Jillian might be embarassed about later in life. We are blessed by family and we love them more than we can express.

So all that to say, Jillian goes in next week to get her head measured with the DSI equipment (digital 3-D cameras that measure her head to within fractions of a millimeter). Then on September 2nd we go and get Jilly's band fitted. From then on she will wear the band for exactly 23 hours a day (we take it off for one hour to clean the band and her head every day). We will go to our follow up appointments for once a week in the beginning and then probably every 10-14 days thereafter. She will most likely wear the band for between 8 and 12 weeks depending on how fast her head grows. It will be a commitment for sure but I think it will be well worth it.

In the meantime... I have been trying to decide how to decorate her band. We are provided with a sterile, white band. However, the outside material can be decorated. I thought about doing it myself but I don't have the time. Luckily, on one of the Plagio Support Group chat forums I saw some entries about Bling Your Band, which is a band design company owned by a mom whose daughter went through treatment. I have been working with Coree, the owner, on coming up with a design for Jilly's band. I think I am going to leave it as a surprise but I encourage you to check out her blog and see the designs she has come up with for other kiddos. I do know that Jillian's band will be cutest by far! :)

Pretty much the reason why parents decorate the band is the comments received from the public. Most people don't know what the band is for and I think they are made uncomfortable by it. Before I knew about all of this I am ashamed to say I thought it was because the child was mentally challenged or something. Maybe they needed extra protection on their head? I had no idea. I never asked or commented but I remember some people whispering. A lot of the parents on the chat forum said they would receive rude comments about their child. Decorating the band keeps the treatment less sterile and instead of being something people are apprehensive about, it might just be a conversation starter instead.

I know that Jared and I will have to deal with comments, stares, whispers, etc.--even naysayers within our own circle of friends and family who would like to tell us how it was when they were kids or were raising their own kids 20, 30 50 years ago and this is all silly and unnecessary. I am trying to prepare now for those comments so they may not be as hurtful later. I just know that what we are doing for Jillian is right for her and as a parent I am responsible for following through with what is best.

More to Come...

Jessica