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Archive for October, 2010

or at least as I sit here this evening that is what it feels like. I always joke that I may never finish a book because I don’t have the attention span to make it past the first chapter. The odd thing with life is we don’t get to decide when the pages are turned. A lot of times you look around and realize you are smack dab in the middle of the latest chapter of your life. This last couple months has felt like it’s own little segment of life. I feel like they went by slowly while simultaneously flying by. Alyssa has come so far in such a short segment of time that parts of it feel like a dream. I wanted to “bookmark” this segment of life by changing the header of the blog. It made me choke up a little to take down the picture that I took of my baby… but I figured the picture that finally made me see her as a kid and not a baby was probably the appropriate choice for all these changes.

Today I could almost see the page turn to the next chapter as Alyssa sat watching me eat lunch seeming to want to participate. I figured it was worth a shot. I threw an apple and a bit of apple juice in the Vitamix… and what do you know? She ate about 90% of it. Now, a few months ago if I said “she ate” it meant that we put food in her mouth which she would thrust back out with her tongue perhaps ingesting a particle and at the end of it she was wearing more than she was digesting. Today? There was barely even a mess. Admittedly I made more of a mess transporting the food from the bowl to her mouth than she did eating it. LOL. There was very little gagging and when she did gag? She corrected her position and kept on eating. At dinner I decided to give it another whirl. The peas and rice were a bit thinner in consistency than the apple had been. She required more wiping of the sides of her mouth with the spoon after bites. (If you’ve ever fed a baby jarred food… you know the motion I mean. LOL.) However, she ate an entire 4 oz jar of baby food with barely any waste. At one point I turned to Neil and said “Geesh. I could have fed her in a restaurant!” I know it sounds silly, but spoon-feeding her used to mean mentally preparing for bath time afterward.

So, now the new chapter begins. I think our short-term goal will be to get to where 30% of her nutrition is taken orally. Well, 30% of her “waking hour” nutrition at least. Ha! I’m totally not waking her up to do part of her night feed. I think that is a reasonable goal. She did  so well today I’m still kind of in a state of shock. It was the first time in a while I had tried simply because she was doing so well with her bolus feedings and they were less effort. However, this felt like a huge step in the right direction! I’m excited to see what the next few weeks bring! 🙂

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I don’t mean “our lives” as in my family’s lives, but “our lives” as a general people. We all have similar people enter … and often exit… our lives. You know that one friend in high school who you swore you’d never lose touch with… but you did. How about that one girl who was always friends with your other friends but you never really connected with. People come and go, life doesn’t often take the route we think it will, and often our friends change with the years. However, if you are lucky there are those few people who have known you “forever.” They know your stories, giggle at inside jokes that sound like broken sentences to the outside world, and will be there to listen to the current parts of your life without requiring an explanation of the past.

For me? One of those friends is Heather. She and I met when I was barely 16. I still remember her making a comment to her mom about how I was sweet… but not the kind of person you want to have to talk to before having your morning coffee. LOL. The last 12 years have mellowed us both a bit. We are kind of opposite personalities to the outside world. I’m the girl who walks in and is loud…and sometimes…ok often…obnoxious. Heather is more likely to hang back, survey an area, and only talk when she feels something important needs to be said. The thing is? When the two of us are alone together our personalities are pretty parallel. She can make me laugh in a way that few people can… with fewer words than should be  required to induce a stream of tears down my face from uncontrollable laughter. The reality is for me? She’s the closest thing I have to a sister. She’s one of those friends who I know no matter what life throws at us… we’ll walk through it with our friendship in place. We’ve seen each other through good times and bad. It’s just a comforting thing to have a friend who listens without judgment, accepts you for who you are, and feels more like family than a friend.

By this point you are probably wondering why I’m rattling on about how much I am thankful for having Heather as a friend…especially on my daughter’s blog. Well, she is the woman responsible for the photos of Alyssa and me that were taken earlier this year. I think it is that same “hang back and survey an area” attitude that makes her the astounding photographer that she is. I think I’ve said it to her so much recently that she’s a tad sick of hearing it. 😉 Much like any other compliment you pay her… she listens but accepts it oh so humbly. I only hope that underneath her quiet “Thank you.” she is actually absorbing it and believing it, because even if she wasn’t the closest thing I had to a sister? Her photography would still bring tears to my eyes on a regular basis.

Today was an exciting day for us because for the first time? Heather got Neil, Alyssa, and me in front of the camera. It’s been nearly two years since we had family photos taken and although the ones I will post tonight are just a “sample”…well… they were worth the wait. This photo shoot will forever mean so much to me… for so many reasons.

It’s her ability to catch moments like this…

It’s knowing that no matter how big his little girl gets? Neil will always have a tangible memory of the days she needed his support to move forward…

It’s the fact that no matter how big she gets? He’ll always be able to remember the way she looked at him like he was the only one in the world who mattered…all while slyly digging her fingers into his skin 😉

It’s the reminder that while we will forever be here to offer her support and help her through the day… her determined spirit means that she needs the opportunity to move forward on her own two feet…

It’s knowing that although life has ups and downs, good times and bad… at the end of the day? I am still going to be getting through it with my very best friend. It’s an amazing thing to be married to your best friend. It means that even when things seem unbearable and unsurvivable… you have someone to talk to. You spend every day with someone who does not always agree with you but is always willing to talk things out until both of you feel good about a situation. I think that Neil and I are very different people than we were when we met over 8 years ago. I’m thankful we grew together instead of growing apart. It’s a beautiful thing to still smile this smile after spending 8 years wrapped in his arms. 🙂

It’s reminding yourself that on the worst of days? Your little family unit will always have the uncanny ability to make you smile through the tears…

It’s knowing that even on the days when you feel like the world is stacked against you… it’s impossible to not laugh when your daughter giggles…

Finally… It’s seeing that *one* picture of our daughter that solidifies in my mind that she is kid now and no longer a baby…

I mean… she will *always* be my baby. Forever. However, that picture? Well…she’s 100% kid. That is my very favorite picture of her. EVER. It will take a lot to ever top it. That picture? It embodies everything about how far she’s come. People always say a picture is worth a thousand words… but I think it would take me a million to tell the story behind what got her there. That picture? Well… it simply would not have been a possibility at the end of August. Here we are at the end of October and not only is it a possibility… it’s a reality.

It’s impossible for me to put to words the emotions I felt as Heather linked me to each photo. While looking through the pictures, a dear friend of mine said: “God. I’d kill for half her spirit.” That? is how I feel more often than I’d like to admit. Alyssa has a determination, positivity, and just plain EXCITEMENT for life now more than ever before…and that is so difficult to explain in text.  However, Heather managed to capture so much of it through her lens. She managed to freeze this time in our lives forever. A time when everything is moving in the right direction, when the pieces of the puzzle are finally beginning to make a picture, and that I’m certain would have become but a brief memory after the years ticked by… as they so quickly do.

I should have been in bed hours ago but I simply couldn’t sleep with all these words floating in my head. I’d like to shout from the rooftops what an amazing friend, photographer and person Heather is. Although… seeing as how it’s nearly 1 in the morning? I think my neighbors would be far happier if I just linked you to her blog. 😉  http://blog.ilovepurephoto.com and if you are on facebook? Well, look up Pure Photo… and like her… because you know you already do! 🙂 … or at least you already know how much I do! HAHA!

I’m so excited to have these memories of my family. They will forever be extra special because I know the person who stood behind the camera today will be sitting next to me on a couch one day in the far future reminiscing about this great day. The people in our lives who have been there through thick and thin? Well, they are the ones who have the ability to make our good days into something great! ❤

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A bit of history…

This is going to seem random especially since I haven’t updated in a while. However, Alyssa’s chiropractor  asked if I’d be up to writing a brief (haha…yeah…me? … brief? She knows me well enough to know that it will be wordy 😉  haha…OK …) testimonial about what Alyssa has been through and how I feel chiropractic services have aided  in helping her move forward. I’ve had people who stumble upon our family ask about Alyssa’s history and I never know where to begin without telling them her entire life story…since concision is my number one downfall. So, I’m hoping that this can be a good place to link them in the future 🙂 … if I can manage to get through it without turning it into a book! HA!

On February 10th, 2007, we welcomed a beautiful little girl named Alyssa into the world via unplanned c-section. She was full term, had checked “perfect” on every ultrasound throughout the pregnancy, and was more adorable than we had ever imagined. However, within about 24 hours, Neil and I knew something just wasn’t right. It took a while to get a nurse to finally pay attention to our worries, but finally someone realized that Alyssa was seizing. She was taken to the NICU and remained there for the rest of February.

During that time we were given the opportunity to see strength and determination in their most raw forms. There were days when the medical staff wasn’t confident that she would make it through the night, but, surrounded by a group of friends and family, we never lost hope. Alyssa came home at the end of the month although we still didn’t know what was causing all of her medical needs. After seeing an amazing pediatrician, we were referred to a dermatologist who diagnosed her with Incontinentia Pigmenti (IP).

When we first heard those two words, the doctor might as well have been speaking a foreign language. Neither of us had ever heard of IP, but when he grabbed the textbook and showed us images it quickly became apparent that this was what our daughter had. It was a moment of turmoil and relief. We now knew what was causing Alyssa to struggle, but we had no idea what IP would bring into our lives. The doctor treaded with caution and braced us for the worst. I still remember him saying “I can’t guarantee she will ever walk, talk, or even smile.” To which I replied, “Do you have a child you can guarantee that with? We are willing to adopt!” For us the blessing behind starting our daughter’s life off on a rough foot has always been the fact that every minor accomplishment is an amazing victory. We were somewhat forced to learn early on to take nothing for granted.

As the years passed we were met with difficult decisions, trying times, and more medical intervention than we had ever wanted our child to endure. However, through it all, we were given the gift of getting to see the good in the people around us, getting to watch this little girl’s spirit grow and thrive, and being surrounded by a medical team who marveled in the person Alyssa was becoming. After struggling with feeding issues for over two years, we made the decision to have a G-tube placed. It was the most difficult decision we had made to date. It was more challenging than any other because it wasn’t life-threatening to leave her without it, but it was definitely life-changing to place it.

The year that followed its placement was one filled with healing for her, our family, and the others in our lives. It removed many of our day-to-day struggles, but we still felt like Alyssa wasn’t doing as well as she could be. Her reflux continued and her vomiting was becoming worrisome. We were watching her begin to backslide. She was losing skills that she had gained and that just was not her style. Although she’s struggled to keep up with her peers, she had always moved forward and not back.

We had discussed taking her to a chiropractor briefly when she was an infant, but due to her muscle tension issues had placed it on the back burner. As she grew I didn’t know if I’d be able to find a chiropractor with the confidence, willingness, or ability to take on working with our special little girl. However, all of that changed the first day I walked into Chiropractic For Life. I went in without our daughter the first time and the energy of the office put me at peace right away. When Alyssa and I went in for the initial evaluation with Dr. Koury, I was leery of how Alyssa would react to the adjustment. I was in for quite the pleasant surprise.

The moment the first adjustment began I saw a calm come over my daughter I’d never seen before. It helped relax muscles that had been tight for years. In the months since Alyssa has been adjusted, we have done the allergy elimination as well as getting intolerance testing done outside of Las Vegas. If I had to sum up the last few months in one word it would be “awesome.” The changes that we have seen in our daughter are beyond our wildest dreams. Alyssa has gone from a state of survival to a state of utter and complete thriving.

Although Alyssa has always been a happy and outgoing little girl there is just a difference in her that is inexplicable. The little girl who used to vomit 10-15 times a day, who’s bedding had to be changed twice a day, and who couldn’t sneeze without emptying her tummy? She’s gone. The little girl who didn’t have the strength to sit, stand, or take assisted steps? She’s gone too. The little girl who so very rarely used her voice? Yep… gone! In her place is a vibrant little girl. A little girl who will babble when excited, only spits up a tiny amount every few days, has a clarity she’s never had.

There are still a few kinks in the system. We are still working on finding and settling into a new “normal.” However, in just a few short months, her life has changed dramatically for the better, and these changes have given us a renewed sense of hope and dedication for the future. We’ll forever be grateful for Dr. Koury and each and every other person who made that possible.

Thank You,

Jessica, Neil and Alyssa

Whew. Well… it is way longer than I planned it to be, but considering all that our gorgeous girl has been through? I’d say that I trimmed 3.5 years down to about as short as I could! Ha! It really is amazing to me the changes that are happening. There are a couple kinks, as I said, but really life is just on a completely different course than it was when we made the trip up to Spokane in August.

I think the things that are astounding me are the things that I didn’t even realize were filling my soul with stress. For instance, in the past every time she coughed/sneezed/choked/etc… I was running for a syringe. I didn’t dare go into a store without plotting out how she’d be vented if need be. Yesterday as she and I strolled through Target she laughed and wound up swallowing her spit wrong. In that moment it dawned on me that I hadn’t brought a syringe. I held her arms up … please tell me I don’t have the only mother in the world who yelled “Arms up!!” when I started to choke… and stayed calm. Sure enough she coughed, cleared her airway, and went back to babbling about a pair of shoes. As I pushed the cart away I thought to myself “I wonder how long it’s going to take before I don’t think every gag will result in a mess?” HAHA! It’s one of those things that was part of our daily life… but isn’t so much any more. A quick list of others are … worrying about putting her in the car after a feed, stressing that she’s dehydrated, pondering whether she’s kept down enough calories for the day, trying to pace the feed with meds to ensure the meds stay in her system, and even so very basic as brushing her teeth right after she’s eaten. It’s funny to me because I hadn’t really even factored all that we had “reworked” to make her tolerate as much food as possible… until things stopped having to be that way. It was like we learned tricks to make things more livable and since they happened one by one we hadn’t even realized they were part of the routine.

Now that they aren’t? Well… I’ve felt more at peace in recent weeks than I have in a very long time. I feel like we are almost in a new groove that will work for all of us! Of course, we won’t stay there long. 😉 After all, I think the next step will be working on getting her to take more nutrition orally! She’s cutting teeth like mad right now and for the first time in her life showing typical signs of teething. The restlessness at night is not so fun. However, seeing her have the desire to chew sure is!

It is a pretty fabulous feeling to have hope back that you hadn’t even realized was gone. It’s an even more fabulous feeling to once again be EXCITED about what the future holds. I’m already beginning to plan her fourth birthday party in my head… and it’s the very first birthday that not one part of me is sad about. Well, aside from that typical mommy feeling of “Oh my goodness! I’m going to have a FOUR year old?! Where did the time go!?” haha! Really though… it was not the smoothest path to get to this road but I truly believe the people we picked up along the way have made every step of the journey worth it! As much as it stinks to be overwhelmed? I’m grateful that sometimes I am COMPLETELY overwhelmed by the number of people who show love and support for my family. Seriously. I’m so very grateful that I get to watch this little girl grow and I’m even more grateful that so many people are cheering her on every day. 🙂

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