Sunday, March 29, 2015

Naysa and her face.

    As most of you know, Naysa has had some behavioral issues since her strokes in December 2013. Right after her strokes she couldn't move very well... unless it was to beat herself on the face. Over the past year and a half she's been much better about it as long as she has the security of her weighted blanket or wrist weights with her lap pad. Lately she has been rubbing her nose raw, not so much punching her nose like she was before but rubbing it to the point she bleeds either from the rawness of her skin or she gives herself a bloody nose.

    Last night, she bit her tongue pretty bad and we were worried about her choking on blood in the night since she just kept moving her tongue around and bit it again. Ben stayed up until about 2 to keep an eye on her and not long after I heard the alarm from the Sami and sat up to check her to make sure she didn't get out of her swaddle to hit herself or choking. I was up every hour, if not every half. I finally fell into a semi deep sleep and was jolted awake by the alarm, I lean over to check on her and there she is, with BOTH arms out...

Which brings us to this morning.

Her face and arms were COVERED in blood! I got her in the tub and ended up having to use the Nosefrida to get some blood cots out her nose!! :(

I'm really, honestly surprised she hasn't broken it yet and I'm not waiting until she does. On that note, if anyone has suggestions on how to keep her safe at night, I'm more than open to options. Swaddling doesn't work, arm braces don't work and wrapping her up in her weighted blanket doesn't work.

Thursday, May 29, 2014

Faith in humanity, restored.

 It's been way too long since I've written and I have SO much cover so forgive me if I ramble and I lose you, I think you'll be able to circle back ;)

    Since I last posted in February I suppose it makes the most sense to start from there, yes?
       It was a rough one. Naysa was at an all time high of frustration as she began recovering more from the strokes, realizing something happened and not understand why she couldn't do the things she once did. She took this frustration out on herself by punching, and I mean PUNCHING her nose. She was doing this before but this particular month was a bad one. So much so that we were forced to obtain a prescription of versed to calm her (and y'all know how we feel about big pharma) so you know things were bad if we went for it. This month was mainly spent trying to find ways to protect her, soothe her and get her on the fast track to recovery. LOTS of appointments and it hasn't slowed down.

     Birthday month! Our little bug turned THREE! I wish I would have known then what I do now. The nights I cried myself to sleep wondering if I would still have a daughter the next morning, the days I begged God and made bargains with Him to just let us have a good life with her. Don't get me wrong, we've been through some shit and that fierce little bug has been to hell and back but she is HERE! She fights every day, never showing signs of giving up and bringing joy into the lives of everyone who knows her. She's pretty wonderful, but I'm biased ;) March was also family cruise month!! We traveled to Miami to meet my parents, my brother and his betrothed, three of my four grandparents and Ben's grandparents. It was so great to see everyone and have them finally meet Ryld! Naysa looooved sitting out on the deck, listening to the waves crash against the ship and the warm tropical breeze through her hair. I hope one day we can take her on another cruise, she was so happy and content for the most part (we were there during spring break so she did not appreciate the loud party goers) she even slept through the night multiple nights (HUGE for her) thanks to the gentle rocking of the ship.

  We had a great time with an extended visit from my seester, Regina and niece Ada. Ben was gone a few weeks so they flew out to spend time with us, Dustin (Ben's brother, Regina's husband) surprised us all when he flew out for a few days as well! It was so good to have family around again so soon after our cruise. I cannot WAIT to move back to the East Coast and have that support again. You have no idea how wonderful and soothing it was to know I could run to the store at night if they were in bed with peace of mind that they are cared for and loved while I was away. I have so very few people I would be totally at ease leaving them with out here, especially with how Nay can be sometimes and the particular way we parent.

 I cannot believe this month is coming to an end! We had a nice visit with Mimi and Papa this month and those never last as long any of us would like. Naysa has gained back majority of her pre-stroke ability and her head/trunk control is wonderful! PT and OT are in full swing (though I'm still not a fan and prefer ABM) She is going to acupuncture weekly which has been a huge help and I am looking into Osteopathy. She got her pediatric stroller (Kimba Neo) today and the most amazing thing of all....a brand new, beautiful wheelchair accessible van was so very generously given to us by an anonymous donor. Ben's Master Chief has been so wonderful in being the middle man where communication is concerned to keep this incredible man anonymous. This gift is something we would only dream of. We'd huddle over the lap top and admire some accessible vans, talking about what we could and would do if we had one, the trips we could take as a family (including dogs!) and how much happier Nay would be without the constant transfer from car seat to stroller. The list of reasons we needed this goes on and on. I'm still in shock, I went to check the mail earlier and there it was...the Tardis (yes, I named it! Don't judge ;p) on MY driveway! This constant reminder that there IS still good in the world, that people still care about people. There were so many people involved in this grand gesture and I want to thank you all, I wish you truly knew what you've given us and I wish I had the words to explain. Thank you <3

Thursday, February 20, 2014

I'm not better than you.

  I hear this a lot as a special needs parent and if you have a child with extra needs, you know what I'm talking about.
    "I don't know how you do it, I don't think I could." "You're so strong" "God chose you to be his/her mama."
 Always said by well meaning people with good intentions but, it always has the opposite effect on me.
  I'm not by nature a patient person and three years ago, I wouldn't have considered myself a strong person. Not to say I couldn't handle a difficult situation should the occasion arise, but I wouldn't classify myself as strong or brave. It took a lot of learning and a lot of breakdowns to become who I am since we received the Encephalocele diagnosis. I've told doctors where to shove it, fired nurses without guilt and automatically switch to mama bear bitch mode when that first foot crosses the hospital threshold. I'm not superwoman or special, strong or brave. I'm a mom. Plain and simple. I get frustrated and have to step outside and take a deep breath, just like you do. We all want what's best for our kids and if you were put in my situation, I don't think you would give it a second thought to do the things I do.
  When Ben and I decided to carry Naysa to term, no matter what the outcome, we had no idea what life would be like should she survive and honestly we didn't care. We didn't think about all of the extra care, IEPs, hospital stays, etc...we just wanted our baby. I had no idea I wouldn't be able to vacuum unless my almost three year old is swaddled or someone else is home to make sure she doesn't get upset and hit herself, but that's how it is. We've adapted. We've learned what pisses her off and what makes her happy, though she is very temperamental at times and sometimes things backfire. It's just parenthood, intensified. It's our normal. I guess on the outside looking in I can see how different our lives are compared to those with typical children (aside from surgeries, 5 different specialists and extended hospitals stays) but I'm not better than you. Don't compare yourself or our lives and think it's not something you could do, that you wouldn't be mom enough to handle it, I assure would be. It would take practice and learning but you could, you WOULD because your kids depend on you, no matter what their ability. Speaking of Naysa....she's up from a nap and Ry is pulling my hair. Time to get back to the reality of the Page zoo ;)

Monday, December 30, 2013

Starting Over

  I've come to the realization that in times of high stress I tend to channel Scarlet O'Hara. Fiddle Dee Dee, I'll think about it tomorrow. And you know what? It works for me. I know eventually I will have to face the reality of the situation at hand, but in those first few weeks when the wound is fresh and everyone else is falling apart I do pretty well in keeping it together. Every once in a while those repressed thoughts and feelings find their way in but I quickly shake them off and continue about my day. I have to be strong my girl, she's one hell of a fighter and I can't let her see me sweat. I can't think about how much I miss her laugh, her smile or how excited she got when it was meal/snack time. I can't think about how we will have to start completely over with therapy to gain back the amazing trunk/head control she had, the rolling, the verge of army crawling, the sitting...all that hard work, the blood, sweat and tears it took us to get her to that point...gone. I want my Nay Nay back. I absolutely hate seeing her just laying around, she was so active and silly. She's a shell of herself right now and I hate not knowing how long/if ever we will get her back to the Nay she was before. Benjamin said it best when we were talking "She could get up and start walking for all I care, I just want HER." I 1000% agree. Before we got smiles and reassurance our girl was still in there, she was improving physically but mentally was taking some time. I can't even begin to explain to you how disheartening it is to see your once glowing, playful, silly, smiley, wiggle worm of a toddler laying expressionless and still for hours that turn into days, days into weeks. Until we learned she had suffered several strokes in her cerebellum, we were just lost. We didn't understand what was taking her so long to wake up. She would just lay there...even when the nurses put IVs in or pulled tape off her skin, things that would usually take three of them to do, she didn't flinch, didn't grimace....just...nothing. But, like I said...I can't think about that. Fiddle Dee Dee!

   I can't thank you enough for the tremendous amount of love and support we've received this month. The sweet messages, words of encouragement, help with the baby, generous gifts...all of it has made this a little easier to stomach. We are in a whole new world of special needs parenting and have a lot to learn with the g-tube care, rehabilitation and finding our new normal. We've got a long road to recovery filled with appointments and therapy and even longer one to acceptance and healing. We are starting over.

Friday, October 4, 2013

Confessions of an overwhelmed mama

This blog has always been a place of peace for me, a safe place to get things off my chest and receive much needed support in return. I've always been honest and raw with my emotions, if you judge me for that...then that's your problem but I won't hold back or keep things PG for your sake.  With that said, I will proceed to spill my heart out.

   The past few days have been really tough for me. I've been so careful about the amount of attention I give both kids so neither one feels neglected or forgotten, I'm new to this whole two kids thing and haven't quite gotten the hang of spreading myself so thin between them and my husband while still leaving 5 seconds for myself. Lately something is going on with Naysa and I don't know what. It absolutely kills me that I can't just ask her and hear her little voice tell me what she's feeling. How can I make it better when I don't know what's wrong in the first place? Is she feeling jealous or left out? Is she hurting or frustrated? I have no idea. I can't comfort my own daughter. The extent of our communication is her screaming, crying, pulling my hair and me desperately trying to figure out what's wrong. Going through all of the usual things that make her happy and failing miserably. She looks to me to make everything better and I feel like a such a failure I can't do that for her.

  It's an emotional roller coaster and I just want to get off. It's exhausting. I've realized I grieve with each new phase of her life. From newborn, to infant to toddlerhood...I grieve them all. She will be three before I know it and if I think ahead to where her development will be a year or five from now, I will go crazy. I take things day by day and just sucks. I'd like to look forward to things with and for her but the future is such an unknown. I worry I won't be able to do this long term, that I will burn out. I need a break and a break isn't possible. I feel guilty for the want to get away and just take time to breathe, collect and focus but also know that if I don't I won't be the best mom I can be for my kids. I really don't know what to do, I feel so alone in this. Don't get me wrong, Benjamin is great support...but he's not a mom. It's hard for him to fully understand the way I feel and the few special needs mom friend I do have can't really relate.

  Today will be spent googling, e-mailing and calling for local resources. It's not fair to them if I just check out, I'll get my shit together, don't worry. Thanks for listening <3

Monday, September 23, 2013

Lots of ground to cover!

SO much to catch up on! I guess I will begin where the last post left off.
   After we got back from San Rafael Naysa continued to do great, her movement was smooth and intentional and we could really tell she was enjoying the new things her body could do. The beginning of August my parents and brother flew out to spend some time with Nay before her days of being an only child were over. My parents were a HUGE part of her ABM success before surgery. They took her to lessons every day, sometimes twice a day and Naysa thrived!

    Early in the morning of August 15th Benjamin and I went to the hospital to welcome our son into the world, unfortunately via cesarean birth. I was very much hoping for a VBAC but alas, it was not possible. After HOURS of waiting around the hospital because my surgery got bumped, they walked me back to the OR and got me ready. It was SUCH a different experience than with Naysa. Everything was explained to me as it was done, there was an air of excitement rather than fear, I was actually able to HOLD him right away and not when he was two days old. I was congratulated instead of greeted with looks of sympathy and bombarded with "I'm sorry's." It was honestly like being first time parents...again. We both expected the nurses to come take him, both relieved and surprised when they never did. He stayed in my arms the entire time. From the moment we left the OR until the time we went home. We were so used to doing things a certain way because of the NICU, we were even saving his diapers to be weighed! That gave the nurse a good giggle ;)  I felt empowered with this birth, even though I was unable to have my VBAC. I made all decisions for him and they were respected, I only wish I could have this with Nay. The days following our arrival home, I began to feel overwhelmed. I felt disconnected from Naysa because I hadn't been around her as much as I was used to and when I finally was, it felt like she didn't even miss me or care.

  Then she had surgery, August 27th and trying to fight off the feelings of depression got harder. I was so conflicted between caring for my newborn and being by my girls side 24/7 in the hospital like I ALWAYS had before. I'm very thankful my parents were here for day shift and Ben stayed the night so she was never alone, but I felt such guilt for not being able to stay with her. She came home two days after surgery, miserable...which only added to my feelings of helplessness. I couldn't hold her or pick her up for WEEKS and she was in pain. I wanted to scoop her up and make it all go away and I couldn't. What kind of mother was I?? All I could do was tell her how sorry I was and cry. A lot. That made me feel pretty damn shitty. My mom tried to reach out and talk to me and I shot her down. I didn't feel like talking about it and I just kept waiting for these feelings to go away. Something I don't suggest, future reference. A month later and I'm finally feeling more confident in my ability to care for both kids with equal amounts of attention and affection.

  Naysa is unstoppable! The past few weeks she's been a whole different kid. Her seizures are G O N E!!! She is sitting and moving beautifully, she is more social and her personality is really emerging. Her incision is healing up great and stitches are just about dissolved :) Ryld is growing SO fast, already getting into 0-3 clothes and size 1 diapers! Life is speeding by, soon it will be 2014 and we can officially mark the calendar for ONE more year in San Diego, Naysa will be three, Ryld will be one and we will be going on a family cruise with my parents and all the grandparents! Exciting things ahead for this little family <3 Well, that's two months worth of updates in as compacted as a post I can make. Thank you for checking up on us and offering support. We love y'all!

Monday, July 15, 2013

ABM Week!

  I'm sorry it's taken so long to update you on the entire week, it's been a long one! We got home Saturday afternoon and bummed around the house for the weekend relaxing, barely even got online!

   This week was amazing and I can't thank you enough for the donations, support and believing in our bug :)  Naysa did wonderfully in her morning lessons with Neil and really took to him. He had a very gentle yet purposeful touch and a calm, silly demeanor which she responded well to. She really seemed to get the most out the lessons with him since it was first thing in the morning. He said she moves beautifully and all of the tools to crawl, walk and so much more we just have to help her get there and learn the natural movement patterns to achieve these goals.

   ABM (Anat Baniel Method) is very different from Physical and Occupational Therapy. This method does not force children (or adults) into unnatural positions they wouldn't otherwise be able to get to on their own. For example, when teaching her to come to sitting we roll her to the side (from a supine position) so her elbow and hand touch the ground before bringing her upright. If you think about how you naturally come to sitting from laying on your back, this is exactly what you do otherwise you're doing crunches. Though the week was focused on these smaller movements, we saw big changes! Naysa no longer 'frogs' her legs up ALL the time, she stretches them out and has really been discovering what her body can do and that she is safe to explore. She's been rolling over a lot more, even bearing weight on her arms to help her from tummy to back! She has much better trunk control and can sit unassisted longer than 60 seconds! She is babbling more, happier and I think starting to really realize SHE is in control of her body and can make it do anything. She grabs for toys that are further away from her and has even been tracking a few here and there!
   Her afternoon sessions with Chris didn't always go so well since it was right at nap time, not to mention she wasn't used to twice a day lessons within a few hours of each other. He got a few good ones in where she wasn't fussy and showed him her potential in which he was very impressed. The things that most seemed to amaze him was her binky skills, haha! She would feel or see her binky, take it in her hands and turn it the right way before sticking it in her mouth. There are so many little things like that we're just used to because she's always done them or gained the new skill a while ago, but seeing these practitioners really made us realize just how amazing this little girl is.

   This was really the first time Ben got to see ABM in action since he's at work when I take her to lessons and I'm so happy he believes in this work and is so on board, especially with my dream of getting certified! :) We saw Anat Thursday and she did a lesson with Nay, unfortunately it was the witching hour of 3pm so that made for an interesting time! She must be used to missed naptimes and grumpy kids because she just worked through it and distracted Nay with different toys, sounds and of course...the binky. She talked about the potential she was in her and how intelligent she is, my heart has never been more proud of my girl. At the end of the lesson Ben sat Naysa on his lap to give her a little snack while we spoke more with Anat and she taught us a lot on methods to teach Nay to be more self sufficient with her feeding, which has definitely proven to be useful since we got home. Not so much when spoons are involved but finger foods, one step at a time.

  All in all it was a successful week and we will be doing it again when we can, until then she will continue her lessons with Kristi and wait for more changes :)