Getting Help

One of the ways we were trying to get help was seeing if we qualified for a pediatric nurse to care for Mira once I start college back up in less than a month. Unfortunately, today we found out that insurance denied us, so we are not eligible to receive help from a pediatric nurse. While this would have an amazing peace of mind to have, we will find a way to make due without that type of help.

We have, however, been approved for early intervention services, and Mira's new physical therapist, Mike, will start coming to our home to work with us this Thursday. He'll come to our house once a week and teach us therapies to implement in our daily routines that will help Mira gain the strength she needs to meet milestones at the proper times. Like improving her core body strength so she can sit on her own, and improving hand-eye coordination so she can reach for, and play with toys. I'm super excited to have a professional work with Mira and teach Joe and I how to help her to the best of our abilities!

Another way that we are exploring to receive help is by filing for social security for Mira. I've addressed how quickly things can add up, and we're barely scratching the surface of the needs she will have on a long-term basis. This is why we filed for social security. My meeting to see if we qualify is tomorrow morning, so I spent today filling out paperwork, organizing medical records, getting our proof of income/residency in order, sorting through medical personnel contact info, and gathering it all for the appointment tomorrow. Maybe we could use this to pay for a pediatric nurse if it became necessary, or save some money in a fund for her to explore treatments not covered by insurance later down the road. Either way, prayers for a good outcome are always welcome! 

And the most wonderful way we're getting help right now is through our loving family and our wonderful community! My sister and brother-in-law started planning a benefit dinner for us a while ago, which was intended to be a surprise. But she couldn't keep it from us for very long because all of our family members hopped on board to help make it happen. Our community has all pitched in to donate items to raffle, and show their support by RSVPing. It's been really amazing watching how caring everyone is, and the dinner hasn't even happened yet! It's not until June 15th, two Saturdays from now, and I'm so excited for it! I'm so blessed to have so many people that love and care so deeply for Mira! Children are all miracles... Mira just had to prove it in ways many people do not, and to see the love, support, and genuine care from everyone means more than words could ever fairly or accurately describe. I love you all, whether you donated, are attending the dinner, sent up a prayer, or even had a compassionate thought go through your head for my baby... I love you all!

Yay!... Wait... I'm Scared...

Monday, 5/27/2013, was the day we had the all-clear from the doctors to start putting Mira on her back. I've been so excited for this day, this milestone of hers, for what seems like forever, but has only actually been six weeks. I was excited about being able to put her in a real car seat instead of that flimsy car bed she had to ride in since she had to be laying on her belly. I was excited about being able to put Aryanna's old swing together and let Mira use it now. I was excited about being able to lay her down without being terrified that she would roll herself onto her back and possibly cause damage to herself. I was excited about being able to stop putting her diapers on backwards, and being able to stop using the butt flaps now that her incision is healed over. I was so very excited for this day for weeks, and so excited about the possibilities of something so simple, her being on her back, until the day arrived, and it was time to actually do it... Then I was terrified.

When Monday hit, and I realized I could put her on her back, I spent the first half of the day pretending today wasn't the day. I was so scared to actually do it. I was so scared that she wasn't ready. What if she wasn't? What if I hurt her? What if she didn't like it? What if it put pressure in a bad spot on her and caused her pain? What if she choked because she's not used to being on her back and doesn't know how to react if she spits up? ... I was terrified.

These milestones are miraculous and make me so proud of her every time she crosses one, but I'm also so scared to change something with her because I'm so scared of screwing up. Like when they told us we could quit cathing for now. I kept cathing anyways. Not as much, but I still did it every couple days until I was absolutely convinced it was no longer necessary. That point was a huge milestone for her... Peeing on her own... But I was terrified about the nagging feeling of 'what if she's not ready? What if I hurt her? What if, by crossing this bridge, I cause her irreparable damage?' So while I'm so excited and proud to watch her cross these milestones, it's also very scary. 

So I text my friend, Katie, who has a daughter about a month older than Mira, with spina bifida... Miss Lila. Joe and I got to meet little Lila before we gave birth to Mira, and Lila's parents, Bob and Katie have become very valuable friends. So I text Katie and asked her what she did when they gave Lila the okay to be on her back. Katie said they absolutely put her on her back and they couldn't wait! Lila did great, and they were also so relieved to get her out of that stinking car bed and into a nice, secure car seat.

So, I put together the baby swing, and put Mira on her back. I swear I didn't breathe for ten minutes! But my fears turned out to be silly because Mira was so comfortable that she ended up sleeping for four hours in that swing! It's now her new favorite place. She's become more alert since being allowed on her back, she sleeps better, and she's never choked. This also opens up a lot more physical therapy doors because the options were limited while she was belly confined.

My overprotective and overly cautious side had me scared out of my wits to let her finally be on her back, but it turned into another milestone where she never stops amazing me and filling me with unconditional parental pride. 

Letting Loose

May 25th was the day some friends of mine and Joe got married. We had been planning on attending this wedding since before Mira was born, so we figured this would be a good time to let loose and spend a child-free weekend together. This would mean letting Mira be away from me for the first time. A very bitter-sweet concept.

While a child-free weekend sounds fantastic, don't get me wrong, it was very stressful thinking about being away from her. The idea of not being there to watch her constantly, or possibly throwing off my milk supply after working so hard to get it back where it needed to be, or what if something went wrong and I wasn't there? The idea was kind of terrifying. What helped? It helped knowing that I wasn't entrusting her to just anyone. I was entrusting her to my sister. Anyone who has followed our journey knows that my sister, Tammy, is not the ordinary family member. She's been with me since day one. She's my best friend. She loves my children like her own. And she trained with Joe and I in Pittsburgh to learn how to properly care for Mira. She is, without a doubt, the only person other than Joe and myself that I would trust to know how to correctly care for Mira.

The wedding was on a Saturday, so we dropped Mira off at my sister's house Friday night. We said goodbye a hundred times, but kept hovering anyways. It was hard to leave, but the break was also welcomed and relieving. Again, I couldn't have left her with anyone other than Tammy, and I was confident that my sister and Mira would be just fine. I was right.

I never text or called my sister once, and she never had to text or call me either (other than to send me adorable pictures of my little beauty hanging out with my wonderful nieces). The wedding was absolutely wonderful! I may have helped myself to a little too much wine, but the wedding was the most beautiful ceremony and reception I've ever attended! The bride and groom were perfect, and more importantly, perfect for each other; and Joe and I had a wonderful weekend together! 

As much fun as the weekend was, and it was lovely to relax while getting a break, I honestly couldn't wait to get the kids back! Reuniting was amazing! Even after only a couple days, I missed them so much, and it felt foreign to be without responsibility for a good 48 hours.