Monday, December 19, 2011

Catching up on December!

Its 5:13 am and I can't sleep. The house is silent and everyone is sleeping, so its the perfect time for me to be alone with my thoughts and spill everything out on here I've been wanting to share for awhile now.
I mentioned before that I couldn't tell you guys what has been going on because of a personal issue in my life. I know I haven't mentioned this here before, but Brooklyn and Liliana have a different father - I was married before Adam. I have hesitated in the past to post about it on Addison's blog but it is a part of our lives and it has influenced the way things have happened somewhat so I feel like it's time to tell you a little more about it.

I got married to their dad, Derek, in 2006 when I was 6 weeks pregnant with Brooklyn, we had Lily in November of 2008 and I filed for divorce in July 2009. It was a very very difficult time in my life, we were living in Virginia Beach at the time and I moved with the girls back to start over here where I had help and support. At the end of August, some friends got me out of the house for a night and we ended up at a local bar, where I ran into Adam again. I first met Adam back in 2004 when I was a senior in high school, so I had known him for quite some time, but we were never anything more than friends of friends. He had broken off his engagement a couple months prior and we laughed about what a couple of screw-ups we were. I remember telling him I don't know how I will ever start over, who in their right mind would want to date a girl with a baby and a 2 year old? He just smiled and said when the right guy finds you, it won't matter to him - he will fall in love with them too. And he was we are 2.5 years later, happily married to one another, living out our happily ever after (finally!). The quarterback of the football team and the cheerleader.... and yet we had to go through so much heartache to get here; it isn't quite as simple as the movies make it seem. God works in such amazing and mysterious ways. I am just thankful every single day that He sent me someone so willing to take on whatever, he's never questioned once if I was worth all the trouble - and then came Addison and the madness of all of it only escalated. The remaining sanity I think comes only from having an awesome God and a rock solid marriage to lean on.

Since I separated from Derek, he has seen the girls about 6 times. Usually once in the spring and around Christmas - and then once in the middle when we took them to Virginia Beach to visit him. I have full custody of the kids, but he sees them when he can and they enjoy his visits. In the past few months, it's become increasingly hard for us to get along and there have been some upsetting moments with him as we work through the issues of a blended family. The reason I couldn't tell you about our move is because I had to go and get a court order for the girls to leave the state of Michigan. This process can all be waived if the other parents signs consent but that wouldn't happen for whatever reason he thought he had, so I had to go before a judge and basically ask to move 6 miles. After a hearing that lasted about 4 minutes, the judge said it was obviously in everyone's best interest to support our move to secure better opportunities for our sweet Addison and granted my request. Even though this judge has always been helpful and fair to me throughout the whole process of the divorce and some issues I've returned to court for since, it still makes me incredibly nervous just to be there and I am always glad when its behind me!

So we are finally all settled in to the new house now that we've cleared that final hurdle. It's so much bigger and it just feels so much like home. We have some wonderful people renting our house in Michigan and it's worked out perfectly so far. Everyone told us all their horror stories about having renters, but our house thankfully is in wonderful hands and they pay their rent on time and we've had zero issues -we love having them and they love the house, so its been a great experience for us all. Just another way God put us in the right place at the right time. He's the one who gave me the push to go through with this, just trusting that He would take care of things.

And He has! I just got the approval letter for Addison's Ohio Medicaid. Adam just finally met union requirements for work and as of December 1, we all had fantastic new health coverage through him as well so that is another huge blessing for our family. Between these two and some wonderful Ohio programs, I think Addison's medical coverage will become one HUGE less stress in my life. So there has been a ton of good news for us recently. Adam's last employer made a mistake on his taxes that accidentally made us ineligible for unemployment, but things were taken care of and we just some back pay from that, just in time for Christmas which was also a great relief. As bills and presents stack up on our credit cards, I know there are so many families worse off than us, so we have really tried to take time to donate as many of our gently used clothes and toys as possible this holiday season, to honor the way we have been brought through each trial we've been faced with and God has made sure our every need has been met. The thing that has become increasingly clear to me, is that in the face of obstacles, I could choose to see that Christmas means getting behind on bills, and stressing about money and barely scraping by to have enough to buy food. But somehow there is always enough - and we are blessed with the financial sense to always dig ourselves out of the hole immediately so we are never living beyond our means. I choose to see it this way. I never wake up and find myself losing my home. My kids have no idea what it means to be poor, they get to be kids and I will always keep it that way (though they occasionally want to know why I won't buy the fancy cereal that so-and-so's mom buys, haha).

We've had some wonderful help along this journey, and I can't tell you enough how much $100 coming at the right time here and there has made so much of a difference to us. So thank you, with all of my heart to anyone who has made a donation, big or small, to support our family this year. One day, Adam and I believe we too will be in a position where we can step in even in a small way and aid a family struggling the way we have. I am really looking forward to that day.

When I find and unpack my camera charger, I am excited to share photos with you of Christmas and the new house! We are so happy in our new place and it's wonderful not to feel like we are all living on top of one another.

Now, onto the most important update: Addison! She's now 13.5 months old, today was the one year anniversary of her due date, and its always a bittersweet day because it makes me think 'what if'. I try so hard not to do that because I know God had a plan that involved her being 'her' and being premature. I try not to ask myself if she would be normal had she not been so very early. Its hard to say - and unlikely - since most of the preemies born at the time she was are all walking and talking and even those who are delayed are not as severe as Addison. I try to remember she was going to get sick anyway, whether preemie or fullterm. They've told me her issues weren't cause by anything to do with her being early, except that it made it harder for her to fight through it since her immune system wasn't as properly developed. But the bottom line is that we would've faced these issues regardless of her being my Christmas baby or not.

She is becoming increasingly hard to feed. She chokes constantly because she eats too fast.... if it wasnt so scary it would be adorable. She takes both tiny little fistfuls of food and crams it all in to her mouth. She crawls over to the cabinets and fridge and tries to get things out herself. She definitely knows what food is and how important it is to her. Which is where it gets frustrating. She's now crying most of the time that anyone is eating, drinking or if she's anywhere near her high chair without food. Its become nearly impossible to get anything done because I have to watch her eat so she doesn't choke, and she's screaming anytime she's not eating. Its an exhausting process and I wish there were relief in sight but I am afraid once she can access food herself its only going to get worse. We dont have any answers as to why her body is starving so much when she is eating all day long, but I pray everyday that we will get a resolution soon. That is definitely our biggest struggle right now. She eats everything and is still drinking her Neocate bottles as well.

A feeding tube might relieve some of the stress on us, but it would only introduce other stress and possible problems with anesthesia so I guess that is off the table for now. Her energy level when she's awake and alert is the best I've seen in a couple of months and she's making very very tiny leaps forward developmentally so I am thinking its not a good time to do major surgery on her anyway. If she gets bad again I will revisit the tube idea but I can't feel comfortable taking her when she's doing well and is relatively healthy and putting another stress on her body.

After the first of the year, she will begin to get PT and OT as well as double the amount of speech therapy. This is an exciting and frustrating experience for us. We LOVE our therapy team, they are fantastic, but its hard to go in week after week after week and make so little progress. Since October, we've been working on basic play skills: Push a button to hear the music. Put the blocks in the bucket. And she still seems totally lost at how toys work. They say they really can't work on 'speech' until she can do some basic playing, and we are really struggling with that. As far as speech goes, she still is not babbling much, but she is getting more vocal and making lots of grunts and noise just to hear herself 'talk' which is nice. Not much meaning to anything yet, but she finally learned to wave and if you ask her she will give you a little tiny lopsided wave and whisper 'ayyyye' occasionally. Still waiting to hear that beautiful voice call out for 'mama'. She makes it quite clear that she loves me intensely though and is great at giving me hugs and some drooly kisses when I need them most.

She is getting braver at letting go of the couch or my hands and standing for a second here and there. Her lack of protective reflexes make her want to take off running and she falls down immediately, but in her mind she can walk and I love that there are no limits and no fear holding her back. Once the coordination and strength is there, she will be running around like crazy. My goal was to have her walking by 15 months and that is creeping up quickly on me. One of the things that is scaring me most right now is her hands. She is having episodes where her hands turn blue and freeze up, the fingers curl and she can't use them. The joints swell up a ton and she doesn't seem to be in pain but the hand is almost paralyzed from her body - its like its asleep but sometimes this last almost 2 hours. I have some pictures of it but I am trying to catch a video of her doing it to show the doctors. No idea what this could mean, or why it just started out of the blue.

Anyway, its now 6:20 and time for me to get moving - at 9:15 I have my anatomy scan for baby number 4 and I need to make sure all the fingers and toes are there. : ) I will post an update later today about how baby is doing, we are now 21 weeks along, this is about when my first preterm labor episode happened with Addison but so far things are staying calm, hopefully it stays that way! They told us this is another girl, but I am secretly hoping today that I go in and they say its a boy, haha. Wouldn't that be a surprise? Either way, I am thankful for another beautiful and perfect child to cherish and raise so in the end it really doesn't matter!


  1. I love your updates! Thinking and praying for you all often! One day you'll look back and wonder how you (and Adam) did it all because it'll seem nearly impossible that you did, after it's all over. It's amazing what God will do for you at the time - He is awesome! Now that you are in our neck of the woods, please do not hesitate to holler if you need anything, even if it's someone to sit with the kids while you need some time or even in an emergency! Merry Christmas!

  2. I hope things keep improving for you all! Merry Christmas!

  3. I wish you a happy holidays. Just curious if you are going through birth to three early intervention or private therapy? As a special Ed teacher, her delays in my area would not qualify her for our services. At 13 months she would only need to make verbalizations and recognize familiar people. Quite honestly play skills are not on our checklist until 18 months and walking is also not considered delayed until 18 months. Every state has different criteria. It sounds like she has many issues and I wish you well.

  4. Although not going with all of her symptoms, but some, has she been evaluated for juvenile rheumatoid arthritis?

  5. Anonymous - We are going to be getting early intervention but also private therapy. Their biggest concern with Addison is not that she's not walking or talking - its that she was developmentally perfect until 9 months and then experienced severe regressions and never recovered. Her neurologist said this is much more concerning than never meeting those milestones on time in the first place. When they say play skills, they are referring to the fact that by 13 months, she should definitely be showing some interest in a toy or book and trying to for example, make it light up and play music if thats what it does, and she just doesn't seem to 'get' how to play with things, even the most basic infant toys. But like I said, they said they would not be that concerned if she hadn't already been talking and moving so well prior to her regression 4 months ago.

    Carrie - its so funny you mentioned that, read my latest post about her hands, that is something her pediatrician discussed with me a little today.