January: Came and went with nothing really exciting happening. Don't get me wrong, every day I wake up and Joey is still here is exciting, but it's just too easy to get caught up in the day to day routine of our lives.
February: We did Joey's room.. I knew Joey wanted a ladybug theme (it wasn't my idea), so we checked out quite a few ladybug crib bedding sets and found one that she really liked at walmart. Once the bedding came we set to work trying to design the room. Bruce painted the room pink and green to match the bedding, and I had a blast at Hobby Lobby trying to find lots of ladybug items to enhance the theme. Joey's God-Mother (Jennie) and my God-Children (Corey, Mykenzie and Evan) bought her the rug, mobile and wall hangings to match her bedding set. I think we spent about 2-3 weeks in all decorating her room, but she still doesn't sleep in it (can't bear the thought of her being that far away from me in the middle of the night). Joey also started getting physical therapy twice a month
March: Joey had an ABR (Auditory Brain Response, a sedated hearing test). THe results came back with mixed hearing loss in both ears. Mild hearing loss in the inner ear, and moderate to severe hearing loss in the middle/outer ear. We were referred to the audiology department at Children's Hospital for Joey to be fitted for hearing aids. We also had our 1st appointment with an ENT, he thought Joey had fluid in her ears (which could account for the moderate/severe hearing loss in the middle/outer ear) and thought she might benefit from tubes in her ears. At that time she was still too small to even discuss surgery, so we go back in August and will re-evaluate then. For my 40th birthday (ouch, did I say that out loud?) I decided to get Joey's footprints tattooed on the top of my feet and her hands and wrists tattooed on my back. If you can imagine, picture that she is standing on my feet with her arms around me hugging me (this way she will always have her arms around me). I will post pictures once I actually get around to taking them (I know, I know, I'm terrible at keeping up with this stuff)
April: Joey finally got her hearing aids, only to find out that they were way too loud. I was hoping for a better reaction when we turned them on, but about 30 seconds into it, she started crying and fussing really bad. We tried them at home for about a week, then had the Audiologist turn them down. Tried them another week, they had to be turned down more, at this point the Audiologist realized that the hearing aids made a loud tone when turned on and thought this might be the issue, so she removed the tone and we tried them again. She was a little better, but still not adjusting very well to them, so they were turned down yet again. She still wasn't adjusting to them at all. But we kept trying.
May: Emma's birthday is in May and Joey's birthday is in June, so Michele and I talked about it and agreed to have 1 party for both girls, so my Mom could be here for the party. It turned out better than I could have hoped. We asked people not to bring gifts for Joey, just simply come and share her day with us, but people brought gifts anyway. One of our friends wrote this amazing poem about Joey and if he gives permission I will post it. I couldn't help but look at the people that were with us to celebrate these birthdays and give praise to the Lord for bringing such amazing people into my life. Still so touched by the love and support of these people.
June: Joey's First Birthday!! I praise you Lord for giving me this precious gift, which is more than I could have ever asked for!! I thought it would be neat if we could have a get together at the hospital with the nurses who cared for Joey after she was born. I thought, what a better way to celebrate the miracle of her birth, than going back to where it actually happened. I called the director of Maternity Services and she just took the ball and ran with it (Thank You Ellen!!). She decided to make it a hospital event and put out a hospital E-mail, put up flyers, and even contact the local paper. We had the party on June 18th (Joey was born the 17th), and not only were the maternity nurses there, but Joey's pediatrician came, as well as my OB, many hospital employees who had only heard of Joey came, and also a reporter from the Dahlonega Nugget came. I'll attach the link for the story at the end of this post. All in all, it was such a great day and I have to again give thanks to the Lord for such abundant blessings in our lives!! I think I've said it before, but I'll say it again, I can see God's hand in all of this, Joey has brought so many wonderful people into our lives that we wouldn't have had a chance to meet if it were not for her.
July: We headed up to Michigan to have Joey's Michigan birthday party on July 10th. We also decided to have Joey dedicated to the Lord and have Jennie and Alicia named as Joey's God-Mothers. I had mailed out many invitations and really only had a few responses. We had expected (with family and friends, along with people who were casually invited) to have approximately 80 people. Much to my dismay we had less than half of that number show up. I was pretty upset about it for a while, but then realized that everyone has a role to play, some people's roles are shorter than others. Some people come into your life for a season, and when their season is over there's no use in trying to extend it. No hard feelings, no anger, just accept that their purpose in your life has been fulfilled. Once I got that sunk into my brain, it was a lot easier to get over the disappointment. Although, there's no excuse for family acting like that (sorry, but being family doesn't mean you get a free pass to act like an ass).
That's it for the past, this is what's coming up:
Joey is having her ABR repeated, she is definitely responding to sound and voices (without her hearing aids). I suspect that either the fluid in her ears was the issue with the hearing loss, or her ear canals have gotten bigger and allowed everything to start functioning a little more normally.
We are also talking about meeting up with some other Trisomy families around Labor Day weekend in Savannah, I'm really hoping that will happen, would love to meet these families in person!!
I've also talked to someone about heading up a SOFT (Support Organization For Trisomy) Chapter in our area. I'm hoping to get that info soon, I'm pretty excited about being able to help support any one else whose facing this diagnosis. I've become a lot more willing to talk to strangers about Joey having Trisomy 18 (most people have no idea what it is). I've been finding a lot of comfort in being able to educate people on it, and also share with them what a miracle Joey is. If even 1 person walks away with a better understanding, then I feel like I've done my job!!
Ok, enough for now. I'll try to be back before another 6 months goes by. Here's the link for the article in the Dahlonega Nugget:
No comments:
Post a Comment