Wow, last time I posted a blog update was in January!! Boy do I suck as a blogger.. Ok to get you caught up on the last 6 months!!..
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:
Joey's 1st Christmas was AMAZING!! 1st of all we were all just so unbelievable grateful that she was still here with us.. We couldn't ask for a more precious gift!! Joey continues to bless us daily with the miracle of her life.. I make no exaggeration of what a miracle she is, her recent bout of Pneumonia and RSV is proof of that. I truly believe her recovery was nothing short of a miracle and God's will being done.
So we spent Christmas with my family (my Mom came down here for Christmas).. She was so unbelievable happy for most of the day (when she was awake). My plan was to give her spoons and bowls so we could start spoon feeding her that day, but of course I left the spoons in her Christmas stocking, so we tried the spoon feeding the day after christmas (more on that in a few).. Back to Christmas.
I spent about 6 weeks working in Christmas projects for our families (MIchele, Aimee and Bruce were very helpful with this project).. I made scrapbooks for the parents (which turned out amazing if I do say so myself).. They were a big hit all around.. I told my Mother-In-Law (Phyllis) that she had to wait to open her gift(s) until the family was all together so everyone would be able to get a look at the book and enjoy it together. I also made her promise that she would call us before she opened the package it came in. Although we couldn't be there to celebrate Christmas with them, being on the phone with them while they opened the box made it sort of feel like we were there.. I also made cement molds of joeys foot prints for the parents, Eric & Michele, Jennie, Dr. Corn (pediatrician), Dr. Brown (the Obstetrician who delivered Joey) and we kept one for ourselves. I also made Jennie call me when she opened hers so in some small way I could be there with her. I had a lot of help with the molds, Heather and Josh came over and we had sort of an assembly line going on. Josh mixed the cement and poured the molds. Heather would hold Joey so I could place her feet in the cement and then run to the sink to wash her feet in between each mold. After her footprints were set into the mold, Heather took care of Joey while Josh helped me embellish the molds. They are truly another one of God's blessings in our lives.
Now to the really good part, I framed the pictures that each of our parents had taken with Joey when we were in Michigan in September. Phyllis and Fred of course loved them, and most of the family got to see them as well. I also sent 5x7's for each of Joey's uncles and Aunts. Joey and I were pretty excited to see my Mom's reaction to her gifts. My Mom is notorious for getting emotional and teary eyed over thoughtful gifts, so I thought we were going to be dealing with Niagara Falls. I gave her the gifts in a specific order, I started with the foot print molds, (she giggled and raved about how cute they were). I made her wait a little longer, and then gave her the pictures. Success, we had tears, but not the big fat tears running down her face.. The pictures I gave her were not only the pictures of her and Joey but also a really beautiful picture of Me and Joey looking at each other. She absolutely loved them, and was pretty choked up over it, but little did she know I was saving the best for very last. I waited til everyone else had opened their gifts and then gave my Mom her scrapbook. She went crazy(er) for it!! Didn't I tell you Niagara Falls? Yeah I was pretty happy with her response. The time and effort I put into the book(s) was well worth it and I would do it all over again. I was so happy to be able to give Joey's grandparents a way to be a part of Joey's progress since they can't be here every day to see it for themselves. So here I was thinking I did great and then my Mom tells me there's a gift for Joey in Eric and Michele's garage. I was puzzled, why the heck would there be a gift for a baby in a garage?? I go out to the garage and my Mom and Ron (her boyfriend) bought Joey a crib!! Not only that Eric and Michele bought Joey a crib mattress!! I had been saying that I thought Joey was just about ready for a crib, but trying to be practical had talked to hospice about getting Joey a used one. I love my daughter with all my heart and soul, but couldn't justify spending so much money on something I wasn't sure she was going to get to use or maybe not get too much use from. So needless to say, I was moved beyond belief (yes, I almost cried). That was absolutely the best gift (besides Joey's life), and completely unexpected. In all honesty I think my Mom topped my gift (but don't tell her I said that). The crib is so beautiful and pretty soon Joey is going to have her own room to sleep in. I have been putting if off for way too long. I have decided even if she only sleeps in it once it is worth everything we put into it. Ok, I think I'm done with Christmas, lets get to the spoon feeding and New Years.
So the day after Christmas we attempted (much more successfully than I had anticipated) Joey's first feeding by spoon. We pretty much just mixed a thicker version of her formula/cereal combo that she gets by bottle. Much to my surprise, she didn't gag, fuss, or throw up!! She ate a few bites, and I think she was kind of baffled about the whole spoon in the mouth thing, but she was a trooper!! We had been doing the spoon feeding once a day for a few days until Bruce shoved the spoon in too far and Joey choked a bit. She was so mad and was crying so hard, her whole body was purple. I managed to get her calmed down, but the next few attempts at the spoon were a complete failure, so I've decided to leave it alone for a while and try again in a few weeks. I'll let you know how that goes.
New Years: Nothing major happened on New Years, except that Joey was with us to ring in the new year (but that's kinda major isn't it?). She was our first kiss at midnight and I wouldn't have it any other way. And what a Happy New Year it is turning out to be!!
So here we are a week into the new year and we have made some decisions regarding Joey's care.
1st we are going to get her involved with an early intervention program down here called Babies Can't Wait. They will provide her with physical and occupation therapy, as well as any therapeutic devices she may need (glasses, hearing aids, walkers, etc) . I've already made the initial phone call so hopefully by the end of January she will be involved with them.
2nd since we are getting involved with early intervention, we will no longer be working with hospice. I'm a bit sad about this, since they have been so wonderful and supportive to us. We love the Nurse Donna, we have discussed at great length our wishes for Joey regarding resuscitation and they have been fantastic about it. Our Nurse brought us a bag/mask for Joey as well as a DVD that teaches infant and child CPR. What a blessing they have been. They willingly modified the DNR we have for Joey so that it fits with our plan (which, in case I haven't stated yet, is 15-20 minutes of CPR with Bag/Mask ventilation, 2 rounds maximum of each, if Joey does not respond to our efforts we are just going to hold her and be with her while she passes. We want her passing to be peaceful and don't want strangers handling, poking, or prodding her during her final moments. However; if Joey responds to our efforts, no matter how slight the response, we will call 911 and hope and pray EMT's or Emergency room personnel will be able to revive her. The one thing we have remained firm and consistent about is NO MECHANICAL VENTILATION WHATSOEVER.. We do not want her hooked up to a machine. I'm sure there are people who may not understand this, but Bruce and I feel it only delays our grief and keeps Joey from being with Jesus. I think it would be very unfair to her to keep her from being with Jesus, and since he has given us so much time with her, when He calls her home I will not keep her here). In case you can't tell I feel pretty strongly about this!!
3rd we are going to do our best to live each day with Joey to its fullest. No matter what happens today, tomorrow, or in a year from now, we are going to give her every possible opportunity to have the best life she can have for however long she has it.
I have talked about Joey's passing so much, and I'm not trying to be morbid, but I am trying to be realistic and yet hopeful at the same time (kinda hard). The reality is babies with Trisomy 18 don't have a normal life span. Even if Joey's life span is only a year, or two or twenty, there are no regrets here. She is and always will be our miracle and a testimony to God's blessings and His love. The hope is that Joey will be one of the few T-18 babies who defies the odds and proves that prayer, hope and faith weren't wasted. (Don't get me wrong prayers, hope and faith are NEVER wasted)..
Well enough for now, I will post again soon, but it might not be until February when Joey is 8 months old, but who knows I may get motivated and be back before then. By the way Joey will be 7 months old on the 17th of January..
Til the next post, thanks for reading and being a part of Joey's Journey (even the smallest part counts)
