6/6/13 Therapy

Today was our first in-home therapy session with the therapist from early intervention. His name is Mike, and he works so very well with Mira. He's very kind to Dustin and Aryanna, as well, and I get really good vibes from him.

Today he showed Joe and I three stretches for her foot, one massage for her legs, and one massage for her back.

The three stretches for her foot, which we hold each stretch for 30 seconds, will help stretch the tissue back to the proper position on her club foot. The massage for her legs, which is just very gentle rubbing, starting from her feet, and rubbing up towards her thigh, allows to help her blood circulate back to her heart. This is why you never massage an extremity away from the heart (which I did not know until today). You are always supposed to push on the tissue in the direction of the heart to help circulation. So we will always start at her foot, and push gently up to her thigh, on all sides of her legs. This will also help the process of trying to awaken some nerves in her legs, and could help her develop some sensation in her lower extremities. The massage on her back is where we tap with two fingers on both sides down her spine. Then apply pressure, using those two fingers, on both sides down her spine. This causes a reflex reaction to the muscles, and makes Mira lift her head while on her belly. Effectively helping her strengthen her muscles and utilize tummy time to the fullest! 

I'm so happy to be learning more ways to help her! I'm very excited to think that some stretches and rubs for a few minutes each day could help her; even if it only helps in the most minuscule ways, it could still make a world of difference!

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. 

Pediatric Nurses

One of the things I have mentally struggled with is the idea of needing someone to watch and care for Mira when Joe and I are not available. I couldn't possibly trust a daycare center or a random baby sitter with her needs. It's by no fault of their own, it's simply circumstances that would be out of their depth. They wouldn't possess the training or skills to catheterize her if need be, clean her incisions, keep irritants away from her skin, or let alone understand how to look for all of the symptoms that Joe and I have to constantly be aware of.

Because of this, I've been almost dreading June 24th. June 24th is when I'm scheduled to start college classes back up. I have three more classes until I obtain my first degree. Once I have it, in order to stay on track career-wise, I should begin interning or volunteering during the next two years while I work towards my next degree in order to obtain the experience needed to qualify for my certifications. All I have been thinking about is how in the world am I going to take care of three children, meet Mira's needs, take care of our household, keep up with my classes and start an internship??? Especially when I have no idea who I would even trust to watch Mira on a regular basis?

I reached out to some friends on Facebook that all have special needs children, and through them, I was referred to a nurse that works for an in-home pediatric nursing program. I messaged her, and she was so helpful! She gave me the contact information for her coordinator, along with her own personal contact information so we could speak, as well. I called the coordinator, and she said "I'll be out to see you tomorrow!" I couldn't believe how easy it was and how wonderful every person I spoke to was!

So, the coordinator and a senior nurse came to my home today and we had a little meeting that basically discussed all of Mira's needs, how often I would need a nurse at the home, they did a small exam of Mira to document her incisions, and obtained our insurance information. They'll now do all the footwork for me! They'll obtain the doctor referrals, they'll contact insurance, and they'll let me know roughly at the end of next week if we qualify. I asked if she thought, realistically, whether or not we would qualify through the insurance companies to receive services, and she said that in her experience, she thinks we will!

The peace of mind I would have knowing that a trained medical professional is watching Mira would be such a relief! I could actually study without worrying about her. I could start interning to stay on track to be able to provide for my family in the near future! It would just be wonderful! So any prayers that anyone wants to send up for this to work out would be greatly appreciated by yours truly! 

Evaluation

Today was Mira's evaluation through early intervention. The point of it was to see how she responded to various types of stimuli to obtain her "score" compared to how other children do at her age. She's only a month old, so expectations are limited.

Honestly, she did fantastic! Her upper body strength is amazing, she's very good at following or tracking faces, she's eating well, sleeping well, and has a great grip.

The only thing she didn't respond to was ringing a bell. However, they told us this is actually really normal for babies that spent a long period of time in a NICU. A NICU is filled with high-pitched beeping, lots of noise, lots of activity, and lots of people coming in and out at all times of the day and night. So while under normal circumstances, the raining of a bell would be alarming to most babies; babies that spent a lot of time in a NICU typically don't respond because they are so accustomed to that type of noise. 

The evaluation was actually perfect timing. Mira was wide awake, but not upset, so she was in the perfect state and temperament to go along with showing off her skills for the early intervention coordinator and the therapist evaluator.

Picking up your head and looking at your Mother's face might not sound like much to most, but I was very proud of her! After everything she's been through, she is so strong physically and mentally, and she's such a happy baby! She just cuddles so nice, or she moves around and looks around, completely content, taking in the sights and sounds! Everything she's been through is certainly defined as traumatic, yet she shows not a single sign of being traumatized. She's not restless, she's not difficult, she's not unhappy or inconsolable. She certainly has many challenges that need addressed that most people don't even think about, but she takes them all in stride! She's so resilient, and I'm just so incredibly proud!

Aryanna was napping during the evaluation, but I was also proud of Dustin. He's very curious about everything going on with her, and he's such a great big brother to both of his sisters. He was asking our guests questions and showing them his action figures, but he listened so well every time I told him that we needed a few minutes to watch Mira do something or for the adults to discuss something. He would just go sit in his chair and wait, and he was so helpful and well-mannered.

So while early intervention is designed to help bridge the gap in developmental delays, or to avoid gaps entirely, I must say that I don't think she'll need too much help. I have an overwhelming amount of faith in my children, in their will power, their strength, their intelligence; and I am one proud mamma!

Revisiting The Past

While I've shared my blog with you all a hundred plus times, sometimes I forget what all has happened up to this point. So I decided to go back and read some of my old entries. Wow. Re-reading my own journey was incredibly emotional! The high points and the low points, and as I'm reading them, I get put right back there in reality.

Like the moment I had to let the transport team take Mira after she was born. Only spending a minute with my new baby, and having to let her go. Let her go to get surgery, let her go away from me, let go of her skin which I barely got a feel for. That was one of the hardest moments of my life.

Or when I heard she came through her surgery! When the wait was over, and even though I wasn't with her, not at the same hospital, I knew my baby girl made it through her surgery! That she was alive! That Joe was with her! That the hurdle had been jumped and she was okay! 

Or even way back, at the very beginning, when Joe and I were just a couple that were going in to get a "routine sonogram" done. Just two people hoping to find out the gender of the new addition to our family. But instead, we were alerted to the reality that something was "wrong" with our baby, and we had to wait an entire weekend just to find out what it was. Was it life-threatening? Would she be healthy? Would she be impaired? What exactly is wrong? The only thing I could do at the time was go find my big sister at her work, and cry on her shoulder. We spent all weekend shooting possibilities at each other. Joe thought maybe Down syndrome? I remember saying the words "spina bifida" and having no clue what it actually meant. And when we finally met with the doctor, and had our suspicions confirmed, spina bifida, and Joe and I just held each other in the exam room, and cried.

Or when I got to hold her for the first time! When most of the tubes and wires were gone. When I got to feel her weight, and put her skin to my skin, and smell her hair! When she finally felt like she belonged to me instead of to the hospital. When I finally felt like I was doing my job as a Mother because I could hold her, and feed her, and change her diaper! It was amazing and relieving, and she was so beautiful because I could finally see her whole face at the same time since she didn't have to lay on half of it, because I could hold her! My beautiful bundle! My precious gift! My miraculous Mira Cole!

So yes, while I've shared my blog over and over, and posted the link on my Facebook a hundred times, even I forgot where we started, and the highs and lows, and the emotions, and the events. But if I can toot my own horn, I must say, it's not a bad read. And if I can toot Mira's horn, I must say, wow! You really can do anything, sweety! You can do anything!