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Well, in the grand scheme of things I feel that her IEP was handled amazingly well. One thing I haven’t really touched on is how outlandish her original IEP goals were. They were set by Child Find… without our input… after spending a combined total of 3 hours with my daughter. I still remember making eye contact and then looking at Neil in a way that said “Is she kidding?!” after each goal was read. We told her at the time that they seemed far-fetched but alas they remained. A few highlights were: 1)Alyssa will get her jacket on and off without assistance. 2)Alyssa will drink from an open cup without assitance. 3)Alyssa will identify 50 nouns using 2 adjectives. I mean, I’m not a pessimist. I don’t think she will NEVER do any of these things. However? I think expecting her to conquer all of that in a year was simply setting her up for failure.

Fast-forward to this year. I walked into that room expecting it to be her teacher & therapists as well as the general education teacher. Instead? Her teacher said “I think this is the most people I’ve ever had at an IEP!” LOL! We had the teacher, the aide, the gen ed teacher, the nurse, the nurse that was going to be taking over for her, the OT, the ST, the PT, the director who oversees the PT/OT in the district, the guy from transportation, the vice principal, and myself. It was a full house for certain.

As we set up to begin the meeting I felt the need to preface. Since I’d gone in thinking that everyone outside of transportation would know my daughter I wanted to let them know why I elected for her to not be there. I just briefly told them that although we want to work hard to push Alyssa to the grandest of her abilities that we didn’t deem it necessary for her to hear about all she wasn’t doing. Everyone understood and I felt more at peace to be able to talk in a manner that I wouldn’t have if Alyssa was in the room.

Overall? Everything went swimmingly! The goals they set seemed realistic yet exciting! Everyone was very positive and excited for what the remainder of the year would bring. We are really going to work on incorporating feeding into her daily routine at school which I think she will really enjoy at this point. Speech is working closely with her with the iPad and I got some good information on some apps so that we can utilize the same tools at home as at school.

As we rounded the table and got to transportation he asked if I had any issues. Well, about 2 weeks ago Alyssa had arrived at school covered in puke and no one on the bus saw it happen. Awesome. I had since talked to both of the aides, her teacher called transportation, and I felt like things had been resolved. I said quite simply “Nope. I think we’re good now that the bus aides have the understanding that Alyssa is the reason the are there.” We all talked for a few minutes… and then? It happened. The transportation guy said something to the effect of “While Alyssa is the reason the aide was put on the bus… they are also responsible for the rest of the kids on the bus.” I felt my WHOLE body get warm. I wanted to fly over the table. Every other child on Alyssa’s bus rode the bus without an aide from August until December. You know why? Oh yes…because they don’t qualify for an aide. We had to fight tooth and nail. Typically? I’m pretty laid back. However, transportation makes my mama bear come out like nothing else. These people have my child when I cannot see her. I took a deep breath and replied: “I’m trying to think of a calm way to reply to that statement, but I’m coming to terms with the fact I’m just going to have to be overly blunt with you for a moment. I’m going to go ahead and call BS on that.” His eyes grew to the size of quarters. LOL. I could tell he didn’t know what to say… so I continued: ” There is not a single other student on that bus who requires an aide. Surely I don’t want them neglected if their is an issue. However, I was told REPEATEDLY by several people from transportation that unless there was extenuating circumstances there was no reason for an aide. That the bus drivers are trained to handle non-aide situations. That unless my child was proven medically fragile she didn’t get an aide. Now? The aide is for everyone?” You could feel the air suck out of the room. He said “Well, sometimes although individual kids don’t qualify for an aide they do as a group due to group needs.” Yeah… I *almost* lost it. That was the point my hands started shaking. I looked at the teacher and said “Please… correct me if I’m wrong. However, the other kids have the same driver they’ve had all year? correct? The driver that each of their parents put them on the bus with without an aide for months?!” She nodded. He began to speak. I cut him off. I said “OK. The fact of the matter is? You, as a group at transportation, need to pick one way or the other. The reason I’m calling BS? Is due to the fact that the last IEP we had when the guy found out that there was an aide in the afternoon? He removed the aide THAT DAY before school even had a chance to let out. Obviously these kids don’t qualify as a group.” I was livid. I don’t like having to get to that point. I could feel myself start to shake. At that point the supervisor for the therapists requested that we move forth. It was good. I’d said my peace. He wasn’t in a position to change anything… and really? I did it without crying! WHEE!!

So, the meeting drew to a close with a steady plan in mind. I think the year to follow will be a great one for her. She’s got goals laid out in front of her and she’s got the drive to make it!! I’m so proud of our little lady!

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Usually throughout the day I kind of “rough draft” a blog post in my head. Actually, if I’m being honest? There are far more blog posts stuck in rough draft mode in my head than I have ever actually found the time to write. However, the typical thing that first pops into my head is a title. I don’t know why but after I start to formulate our day that is what rises to the top…oooh and then it is ACTUALLY at the top. Ha.

Today? All I keep thinking is “No.Frickin.Way.” …but I didn’t feel that was an appropriate title. I didn’t feel that it gave the appropriate amount of weight to what today encompassed. Not to mention? It doesn’t envelop the … gosh. I don’t even know that I have a word to express the level of combined excitement/joy/hope/pride/etc that I hold in my heart at this very moment. I just keep thinking “No.Frickin.Way.”

As I started to formulate this post my mind went back to three months and eight days ago. I sat across the desk from Dr. Tish and received the news that our daughter was potato and soy intolerant. I got that news just after I hadย  to ask for a towel to clean up the vomit from my child’s shirt… just after I had seen a look of compassion, concern, and worry rush over a near stranger’s face at the sight of my child choking and fighting to catch her breath. Three short months ago I packed extra blankets, waterproof pads, and extra changes of clothes. Our days revolved around trying to get her meds in her at just the right moment so that she would keep them down and hopefully tolerate enough of a feed to where we weren’t concerned for the day about her hydration.

What amazes me the most looking back? Is how much I didn’t realize the strain that was present. For us? It was our “normal.” It was all Alyssa had known. I woke to the sound of her gagging daily and just figured it was how things were. We stripped sheets daily and had just factored it into the daily routine. We planned when to feed her, tried to get a quantity that would stay in for car rides, and overall? without even REALLY realizing it? We were in constant “wait” for the next time she’d vomit. . . and we didn’t even realize it. It was just how life was…. until it wasn’t that way any more.

September is a blur. There was a lot of the “worse before better” that came with trying to dial in her diet. The vomiting increased. It was harder to handle because it wasn’t laced with the smell of vanilla. There were calls to Windrose for advice. There were moments of worry. There was a time when we wiped her intake down to just coconut water because she wouldn’t tolerate any thing else. There were moments when Neil and I lost it together after she was in bed. There were days when I wanted to give up. When it felt TOO HARD. When we’d go to the chiropractor… do the NAET (http://www.naet.com/) testing and find out we had to cut out something else for a day… and I’d want to throw in the towel. Instead? We stuck it out. We muscled through. Alyssa once again showed us that if we are willing to put in effort…she’d not only match it but she’d surpass it as well.

September faded into October and October into November. It was a trying few months in many ways. November is for some reason always an emotional struggle for me. I don’t quite know why… but it seems to happen that way. However, over the course of those months something amazing happened…well somethingS amazing. Alyssa is not the same weak little girl who sat nearly lethargic as I got the news that day at Windrose. Alyssa is not the same little girl who had to be slowly and gently fed so as to keep her from vomiting. Alyssa hasn’t woken up gagging…in…well… I don’t even remember the last day. If she spits up now? It is just a tiny amount.

At any rate… as you can tell… all of this stuff has been gradually changing even if rapidly. So … why am I so speechless about today? Why am I without a title for the events of today? Well… it is a day that I didn’t think I would see for a *very* long time. It is a day that I honestly didn’t know if we would ever experience. It is a day that I for certain would have never placed in 2010. It is a day that once again showed me what a determined and strong little girl we get to spend our days with. What happened today?

Well… Alyssa did not receive any food via her g-tube today!! Not.one.bite. She ate 100% of her food calories off of a spoon. What’s more? SHE ENJOYED IT! She lights up when you say “Do you want to eat?!” and she actually stays interested until the bowl is empty! Of course she still got her supplements, medicine, and liquid via her g-tube. However, she consumed 30 fl oz of purred food off of a spoon today. Now… say it with me. “No.Frickin.Way!!!!” ๐Ÿ˜€ I just cannot even begin to put to words the emotion that it fills me with. Maybe after a couple of days I will be able to, but probably not. I am *so* proud of her. So very VERY proud. Also? I’m so EXCITED for her. I’m simply THRILLED for her that for the first time in her life food is not a source of pain or discomfort. I’m elated for her that she’s gone a long enough time without food causing her pain that she can actually enjoy meal time. Finally? I’m a bit…ok a LOT… excited for Neil and myself. It’s just…well…EXCITING!!! I’m hoping that today is just the first of many to follow!!! โค

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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 didย  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! ๐Ÿ™‚

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So, we had our initial appointment today and it went really well. I felt like I had to dump a WHOLE LOT of information onto the doctor for one day. However, she was kind, gentle, and understanding. We talked about what things had made things easier for Alyssa, what had made it a larger challenge, etc. She listened intently and gave me some good feedback as well. The interesting part was just reading the side label of Alyssa’s “hypoallergenic” formula she was able to tell that at minimum it has potato, soy, fish, sugar, and meat components. She did the blood tests today and we go back tomorrow for the results. How so quickly? She is the one that does them.ย  Honestly? She is so awesome. I was overwhelmed, still a bit jumbled from the flight and worried that I would forget something.

I’m excited to see what tomorrow brings. It will probably mean hand making food to go in Alyssa’s overnight feed but I would be more than willing to do that if it meant that her quality of life would be improved! Tonight I will go to bed hopeful for what tomorrow brings!!

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To my birthday girl.

My sweet Alyssa,

I hardly even know where to begin. I cannot believe you are three today. On one hand it is a struggle to recall a time you were not in our lives, and on the other it seems like only yesterday we were prepared to welcome you into them. Two young parents anxious and excited to meet you, love you, and embrace you for exactly who you would become. I remember the moment you cried for the first time and the feeling of my own tears on my cheeks. I remember staring at you from a few feet away in complete awe that you were “ours.” As they wheeled me back to the room, and you went with your daddy, I called Grandma Renee to proclaim “She’s so beautiful.” It was so very very true. From the first moment I saw you… you were my perfect, beautiful, little girl.

That evening feels like only yesterday… and yet… it has been three years almost to the hour since you were born. Of course the days and weeks that followed that first day were nothing short of the hardest any of us has ever lived. However, you started out early showing us exactly what it meant to be strong, to prove people wrong, and to be exactly who you needed to be. You taught me more in your first weeks of life than I could have learned in years of studying. You showed me the good in people in a world that we all to often get to see nothing but the bad. From the moment you were born my whole life changed for the better… even in the moments it seemed like a nightmare. You drew me closer to my friends and led me to God. I will forever be grateful for that. Some parts of it have been a challenge but somehow at the end of the day you make the world make sense… you make it a better place.

Alyssa as you enter your third year I cannot help but reflect on your second. It seems like only yesterday you were picking out a cupcake from the case to demolish upon returning home. I can still smell the chocolate icing and remember how fast you turned that perfect puppy cupcake into nothing but chocolate crumbs. I’ll also always remember that getting buttercream off of a toddler is akin to mixing oil and water… nearly impossible. LOL. As you entered you second year you were strong, full of life, and ready for everything the world had to bring. However, the first months were filled with battle. You and I struggled will against will for months. All I wanted was for you to be nourished and all you wanted was to never eat. After finding out that you were suffering from eosinophilic esophagitis (EE) we thought we had finally found the answer to our feeding issues. We were, as we usually are when it comes to predicting what you will do, wrong! Even after correcting what seemed to be ailing you your strong will still proved to be equally matched with mine. Finally, you won. Your daddy and I made the hardest decision of our lives. We got you a g-tube. I prayed for weeks, asked everyone who had experience that would talk to me what to do, and finally we came to the conclusion that the decision had to be made. It was petrifying, because it wasn’t “necessary.” It could have waited. However, we all knew that although not necessary… it would be life changing. Boy, we were right on that one.

I’ll never forget watching you become nearly instantaneously clearer. It was as if you were finally getting everything you needed to be the personย  you had wanted to be for the months prior. I remember telling someone “She’s still her, but it’s like all the ‘hard’ parts are gone.” Your best attitude was on the table. You and I no longer had to battle wills daily because you would sit happily to play while being fed. I don’t know who it healed more… you or me. Your hair brightened, your seizures diminished, you learned to clap, you were just… nourished. Just what we had wanted from the beginning! To give you the opportunity to thrive every day. I cannot believe that it has been seven months since the tube was placed. In the seven months prior to it being placed you maintained the exact.same.weight. In the seven months since you have gained five pounds and four ounces!! That is HUGE. Couple that with growing a few inches and shoe sizes. Alyssa…it is amazing to watch you thrive.

It is not just your size that has changed. When I think about all that you conquered this last year… you have come so far. I remember a time when we struggled to get you to sit for even a moment and now there are times you will sit for nearly a half an hour. I remember a time when you didn’t understand the world around you and now you can pick your daddy out of a crowded room. I remember a time when you wanted to go play with other kids but had no way to get there and now you crawl nearly as fast as most kids walk. I remember a time when the second you realized someone wasn’t holding on you’d fall over and now you will stand against something to play. You are growing and changing every day and I don’t ever want to forget how far you have come.

You amaze me. You walk through every day with a grace I can only pray to have one day. You conquer your difference with a smile on your face and in your heart. You teach me every day what it is to love unconditionally. There are days when I simply don’t feel that I have the energy to make it through. Those are the days you cling to me, you make me slow down, and you snuggle into me in a way that only you can. You? bring balance to my life.

Three years ago today if someone had told me of the path we were going to walk… I would have never believed them. Three years ago today… your father and I would have never had the strength to make it to this day. I will forever be grateful that your tiny little body was filled with one of the strongest souls I have ever encountered. You show me every day what it is to work hard for what you desire. You show me every.single.day what it is to be happy to be exactly who you are. There was so much I had in my mind that I wanted to teach my future daughter and instead I am the one who is educated every day. In three years you have taught me things that I would have never learned without you.

Parts of our journey together have been hard. Your third year was no exception. However, when I stop to think of all the people who are a part of our lives that would not be if you were “typical” it becomes a bit easier. You have brought people into our lives that fill our cup every time we see them. People that we would have never met without you in our lives. You have shown people that when they set the bar high… you will find a way to reach it.ย  You stop at nothing to prove everyone wrong for all the right reasons. You don’t have many words but I love to watch strangers interact with you. I love to watch a cashier who is just going about her day brighten up at the sight of your smile. I love to watch you clap proudly when another child succeeds. Seriously, I cannot tell you how proud I am to call you my daughter.

That era of two is over and now we are on to the big three. The last few weeks have been a challenge for so many reasons. I would have never expected you to be the person you are today when I envisioned your third birthday. However, I would never change exactly who you are. You are more amazing than I could have ever anticipated when I envisioned “normal.” As we sat around the table last week planning out your year to come all I could do was nod to everything they said about what your goals and outcomes were. I know full well no matter what they write on a piece of paper… you are going to do exactly what you need to do every day. It may not be what the rest of us want you to do… but it will be exactly what you need to do. I can’t help but chuckle to myself as they so “knowingly” plan out where you will go over the course of the next twelve months. All I can think is “Ha! You’ve obviously not dealt with my child much yet.” They will learn soon enough.

I am excited about your birthday but admittedly more excited about you starting school. I was sad for a few minutes about the fact that we had to wrap up things with early intervention and head to a new group of people for school. Then, the other day, it hit me… it needs to happen. You, my sweet little girl, need to show these people what determination is. It floored me a little to hear a speech therapist who had only seen you for an hour say “she tries SO hard.” For someone who had only seen a glimpse of you to see so much of you… it will forever amaze me how you wiggle your way into people’s lives. School is going to be a whole new setting for you but I know it is is going to be one in which you thrive. It is going to give you so much that we simply cannot give you by keeping you home. You need the room to roam. You need the space to carve your place. I have watched you make your place in playgroup with amazement. It is such a humbling experience to watch you etch out your place in a group without speaking a word or taking a step. It is such an empowering experience to watch you be confident that you are worth their time, that you will be a good friend, and that you are exactly who you are and that is all you need to be!

Alyssa, I know this is not the most concise letter I have ever written. I think I could fill the pages of a book with all that I would like to tell you about your first three years. I could have never envisioned this path but I am so grateful that you placed us on it. You are my light, my strength, my educator, and my hope. You give me belief that one person can change the world. You have surely changed mine.ย  This year will be your year. This year is the year that you get to be independent. This year will be great because YOU will make it that way. There will be days when you need a break and feel like the bar is just too high to reach. Those will be the days daddy and I are still around to lift you up to that bar. There will be days that you just want to break down and do nothing. Those will be the days daddy and I help to do it for you. We are still here and still willing to help when you need us, but this year? Is your time to shine a light all your own for a whole new group of people.ย  This year? You will show a whole new set of people exactly who you are. This year? You will be exactly who you have been all along… every.single.day. There will be days when we are worn thin and things seem unmanageable, but I know the three of us will finish out each day as a family with peace in our hearts knowing we are exactly who we need to be. Thank you for taking the time to teach us that. Seriously.

I suppose just like every year… every letter needs to come to an end. However, I know full well that although another year has ended… your journey is just beginning. Thank you for letting your father and me walk it with you every day. I promise you now that I will do my best every day to be exactly the mother you need me to be… even if some days it isn’t the mother you want me to be ๐Ÿ˜‰ . I love you little lady and I could not have dreamed up a more perfect person to be our daughter if I slept for an eternity. I will forever be thankful for God knowing us better than we knew ourselves.ย  He’s got big plans for you and I feel truly blessed that he chose us to walk this journey with you… even on the hardest of days that feeling will never change. Thank you for being exactly who you are every day. Thank you for being who you are and for being patient and loving while I learned to love you for exactly who you are. I will forever be grateful for the ways that you changed my heart, my priorities, and my life. You are my light. Thank you for shining on even the darkest of days. I love you. Forever.

Love,

Mommy

The concept of balance. I did not want to publish the other letter without having this one up as well. I wrote most of this one today. As you can tell… God answers prayers. My heart is slowly refilling with peace. I have not shed a tear today. That is a first for many days. My little girl is who she needs to be …and to be honest? Who we need her to be. I could have never ever imagined that this would be the journey we would go on together. However, at the end of the day I would not give back a moment of it. I have had my life changed by the people who have come into my life through the course of this last three years. I have drawn closer to people who have been in my life for years prior. The reality is… IP is a part of Alyssa… and Alyssa is an amazing part of the world. I know that through Alyssa the education about IP will grow. I know that through Alyssa more and more doctors know what IP is. I know that this little girl has a huge purpose. I also know that this was the first year I worked THROUGH my issues with IP instead of around them. I feel a sense of peace in this moment that I haven’t in a very long time. Thank you Lord for giving me the strength I need to make it to the end of each day… even if I have to borrow it from the people in my life some days… thank you to those who lend it out when it is needed. You may never know how much it helps.

Finally, I have had a few people request info about IP over the last couple weeks. I will take the time to put up a post just about IP in the coming weeks. Google is a scary scary land of overblown stories and terrifying recounts. The doctor that diagnosed Alyssa told me that I was welcome to Google… but all I would get would be worst case scenarios ๐Ÿ˜‰ LOL! So, give me a bit to get her settled in school, birthday partied up, and I will write about IP ๐Ÿ™‚ . Thank you so much for being a part of our lives ๐Ÿ™‚

P.S. Pics will be around in a few days. I accidentally sent the camera charger cord home with early intervention instead of the light box cord LOL!! Oh…and the grammar on this probably sucks a little more than usual ๐Ÿ˜‰ I will probably go reread it when things calm a bit! HA!

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Another year approaches…

We are only a few days from another birthday. I have a few posts that I’ll put up over the next few days. I’m trying to work up the confidence and serenity to post one of them. I know it needs to be said. It will come. Last night was a rough night. I wish I could say birthdays were a time of rejoice in my heart. Each year a bit more of it is exciting. Each year I am grateful that we get to celebrate another year. I cannot imagine a life without this shining star in it. Each day with her is a blessing. It’s easy to lose sight of how much of a blessing it truly is when you get caught up in the appointments and day-to-day. The reality is that is what makes birthdays a bit of a challenge. Knowing that all the evaluation will come.

I woke up this morning with peace in my heart. Not my whole heart but the better part of it. When I woke up to the sound of my little family crawling in bed with me to awaken me from a good night sleep (Sundays my wonderful husband lets me sleep in a bit… it’s a great way to start the day). The sound of her giggling with her daddy is healing to any struggling soul. She loves that man in a way no one else ever will. I love him and I could have never imagined anyone else could love him more than I do… I was wrong. The three of us snuggled and giggled in bed for a bit this morning. It was a bit of that ‘typical’ I somehow still try to search out.

We headed downstairs to get her meds, a bit of breakfast, and plot out the rest of the day. Neil is off until Thursday so that we can get through all the scheduling for school, final appointments with early intervention, and all the other “stuff” together. Plus, what little girl doesn’t want her daddy home for her birthday? I’ve wanted to cut her hair for a few weeks but doing it alone is akin to trimming the mane on a wild pony. So, today seemed like a good day. Daddy entertained her whilst I styled her hair. It may sound funny but somehow giving her a “big girl” style helps me feel a bit more at ease. I am so grateful for so many of the people in her life. They treat her like a kid and not a baby. Alyssa is very much a nearly three-year old mentally in many ways, but due to her size and motor skills sometimes it is hard for strangers to see. I think keeping her overall appearance true to age helps remind even me that she’s no baby ๐Ÿ˜‰ .

At any rate, last time I cut her hair I regretted not giving her bangs. Today? Oh I love them. Somehow they are so *her* and so… a fresh new look. It almost made me want to chop off my hair. Almost. I cut layers too! It’s amazing the level of volume it gave her seemingly fine hair. Blah blah… pictures are worth a thousand words. Right?

Making sure dad doesn't get too far away...

This one is a good front shot. Plus, a shot of the wheelchair I have yet to post a blog about and her new leg braces (thank you Shriner’s). How cool is her chair? Purple. Yes. Tiny. Yes. Awesome. Yes!

It’s hard to believe just a few days past 3 years ago my sweet baby had a mohawk from having a central line placed… and now? I think I’ve probably cut a total of 6 inches off her hair over the course of a few cuts. IP can affect hair and make it wirey and hard to manage. Alyssa has the softest honey brown hair. I don’t think I have ever taken her to the pediatrician without her making a comment on how much she loves the color of Alyssa’s hair. I can’t say I blame her.

Well, we decided that we’d get a few tasks handled today. Alyssa needed shoes that fit comfortably over her new braces. Her shoe size without them is a 5 and with her hand-me-down braces she was wearing an 8. These one’s put her squarely in a 6.5. The great part is that means the shoes should fit until her feet catch up to the braces. The better part? Payless had the most perfect toy ever. I want to build something this same height. We’ve been putting her legs in full length braces for about 30 minutes a day to stretch her legs and then after those minutes we’ve had her stand up in them and play by the couch. She’s gained so much confidence in assisted standing over the last couple weeks. Again… pictures are worth a thousand words…

"Dad. Check this out!"

She’s pretty amazing if you ask me. We got her the shoes she’s wearing in this pic. They are the most adorable little brown mary janes. Not overly dressy but enough to look fancy if they need to. I was not completely sold on them until she took solid steps in them (with me holding her hands of course) to get to that toy. It amazes me how adaptive human beings are. This sweet little girl without the ankle strength to take steps… and yet… give her braces and a sturdy pair of shoes? She’ll figure it out. Of course fancy brown shoes don’t work for every occasion so we got her a pair of sneakers…that her mother wishes they made in her size… LOL!

oh the pink sparkles... love!

With that our afternoon drew to a close, she took a nap, we watched a movie (and I *might* have taken a nap too), and then we all spent the evening together. It was nice. A relaxing day that I think all of us needed. I’ll call it “calm before the storm.” Ha! It was nice though. That bit of “typical” that calms each of us a bit… even her!

This week is going to be a whirlwind… but I know that she is going to love school and love being three. Yes, I am almost to the point of being able to smile about the fact her birthday is coming. She’s going to rock three… just like she has rocked every other year she has come through. I can’t wait to watch her blossom into a pre-schooler. My mind is ready and my heart gets a bit closer each day. Thanks to everyone who has held my hand, listened to my banter, told me what I needed to hear, reminded me that the good always outweighs the bad, reminded me that God put her with us for a bigger reason than we realizeย  and well… just been there. You may never understand how much knowing that there are people thinking fondly of our daughter every day truly helps to make it to the end of the more difficult days. So, really… thank you ๐Ÿ™‚

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I am going to own up and start writing more. I am going to make it a priority. I am sorry it has fallen by the wayside. October through January are typically the hardest months for me. I struggle with Alyssa’s birthday approaching. I know… mean. However, I just know it is going to encompass seeing way more specialists than standard, answering way more questions that I want, and having her “measured up” to the world around her. That’s all well and good. It just takes a bit to mentally prepare myself. I get a bit closer each year and this year after some soul-searching and heart to hearts with people I love I’m actually in a pretty darn awesome place.

I cannot believe I’m going to have a three-year-old in less than two weeks. People tell you the time will fly. We even used to say driving home from the NICU that in a few years it would feel like a blink. However, when you are living it…even when you are saying it outloud… it is hard to believe. Until one day you wake up and your tiny baby who was so helpless and hooked up to a ton of machines is now rolling, climbing, crawling, babbling, demanding her way, and making sure there is not ONE person who doesn’t know what she needs or wants. Ha! Her developmental specialist has said a few times that although Alyssa cannot talk? You would never wonder what she wants.

I should probably use this post to bring every thing up to speed and then just roll forward. That is probably easier than trying to backtrack at this point since I have been slacking for quite some time. I’ll break it into categories to make it easier to write and read.

Let’s start at the top and work down ๐Ÿ˜‰ . Ha. Neurology. Alyssa’s seizure activity has remained nearly nonexistent since getting all of her meds, all of her nutrition, and not having nearly as many emotional spikes now that we have developed “communication.” The seizures she has now are different from the ones she had before. She used to just kind of fade out for about 10 seconds (strangers just thought she was snuggling into mommy or daddy ๐Ÿ˜‰ ) and then pop back like she was never out. Now, they are kind of trippy. She’s only had about one a month but they start with either her tongue or her eyes twitching, then go to her right hand, and then her right foot. It’s a gentle twitch and they last about a minute. She has had a couple awake and it’s a weird thing to watch because if it is just her hand and foot going, then mentally she is there. She has actually seized and never taken a break from the toy she was playing with! The neurologist has told me that these are neither better nor worse than the seizures she was having before. However, it does indicate that she probably has a centralized lesion on the left side of her brain. This? Explains a ton! Why she is struggling with walking, talking, etc. I asked him if he thought it was something she could overcome and he said something to the effect of “I can’t even guess. This little girl has surpassed every.single. expectation I have ever had.” That? was good enough for me. It was a good reminder that although she is approaching three and not outwardly a three year old … she has come a LONG way!

OK, next up is vision. Her eyesight has not changed a lot. She has learned to take her glasses off which although impressive… is frustrating. Ha! We have to take them off when we put her in the car or they become her favorite toy as soon as she knows we can’t get to her (yeah… she’s not smart… at ALL). We were going to try patching for a bit but as it stands her eyes are leveling out without it so we aren’t doing it just yet. We figure glasses with no patch is better than her ripping both off!

I suppose speech should be next on the list. We wanted to make sure she was getting all the opportunities she could so we took her to the dentist. Her teeth aside from one of the front ones are cone-shaped. We wanted to make sure they weren’t causing pain, difficulty chewing, etc. The doctor said although they are an odd shape… they are in great shape. I was definitely relieved about that. After all with all the spitting up she has done over the years… at least some of her good teeth genetics came through! With that, we persue speech. Alyssa has knocked me into place with her vocabulary. It consists of three words that we know she can say: Daddy, Hi, D.T. Who is D.T.? Oh, just our dog. Yes my daughter will proudly call the dog… and not say mama. I’m cutting her some slack since the “m” sound is so much harder to make, but still? she’s a turkey! She did make the “oggy” sound as the dogs ran by one day which made her developmental specialist quite pleased. She is definitely doing more sound play lately … and some of it is not whining ๐Ÿ˜‰ .

Coupled with speech is feeding. She still doesn’t so much care about eating. She’ll do it. Especially at playgroup. However, she just doesn’t care if it ever happens. Luckily the tube has seved us well. I’d venture a guess that she’s at just about the 25 pound range which is quite an improvement over where she was last July. She’s definitely thriving. She still spits up quite often but we’ve figured out ways to minimize it and unless it is a situation where she is gagging… it’s just our “normal” LOL.

Hmm, what’s next? Muscles I suppose would be a good way to group all the rest? Alyssa got her wheelchair so that she can go on the bus when school starts. Let me say right now so that you can exhale and not get all tense. THIS IN NO WAY MEANS THAT SHE WILL NEVER WALK. Is it a possibility that it may take her more years? Is it a possibility she *might* never figure it out? SURE! However, the reality is now, in this moment, no one is saying it will never happen. Right now, they are saying she can’t climb the stairs to get on the school bus and she needs to have means to get on the bus. We could have gone with a special needs stroller. However, the wheelchair provides a lot more adaptability and long term use. It requires less battling with the insurance later ;). In the same vein, we were able to sneak onto Shriner’s list right around Christmas time and Alyssa gets her very own leg braces this Wednesday!! She has had hand me down ones that we are so grateful for, but they are pretty big. In addition her physical therapist brought over some knee immobilization braces that we put on her with her AFOs (ankle braces) and it lets her get a GOOD stretch of the legs. This has actually enabled her to stand up for a few seconds with the braces on! The funniest part for me is that she still crawls with her ankle braces and the full leg braces on! Talk about crazy upper body strength. LOL! There is no wayย  I could drag my body with just my arms unless it was an emergency. Alyssa does it like it is no big deal! Finally, we got her gait trainer (like a big complicated walker) approved through the insurance. However, coupled with a HUGE deductible this year… it is going to wait a couple months to be ordered.ย  I’m not tooo worried about it because I know her school will have plenty of stuff and she’ll have enough on her plate without it for a bit.

School is the next and final topic. We go Monday the 8th to figure out what services they are setting her up with. I’m going to attempt to get her into the same school as my roommate’s younger daughter. The people there are awesome. If not, I know that she’ll thrive no matter where she is. We’ve been going to a special needs playgroup on Fridays for a few months now and she LOVES it. What cracks me up is she is the only kid in group who cannot walk and I don’t even think it’s dawned on her that is different. There is one little girl in particular who I adore because she adapts to Alyssa without even thinking about it. She doesn’t treat her like a baby but does things the way Alyssa does so that she gets interaction that is just on a whole different level. Sometimes quite literally ๐Ÿ˜‰ . If all the kids are running to do something and Alyssa is crawling? This little girl gets down and Army crawls with her. I. LOVE.IT. At any rate, school is coming! She will probably start February 15th. We *could* start her ON her birthday, but that just seems a bit mean. “Hey, Alyssa, you are three now… off to school.” HAHAHA! Ah well, I think a Monday is an easier day to start anyways. I’m excited. I know I *should* be sad and emotional about my baby going to school, but I know it will be great for both of us to have a regular break from one another. I plan on using that time to sew and get back to stocking my online store. I’ve been doing custom work for a few weeks and had really forgotten how much it feeds my soul to have something that is “mine” and have “my time.” Plus, I know our evenings together as a family will be awesome since the days will be apart. I cannot wait to see how much she picks up this year…and hopefully it won’t all be germs and bad behavior ๐Ÿ˜‰ .

I suppose that brings everything up to speed. I’ll try to get pictures up this week. She really is turning into a gorgeous lady. She has lost so much of her baby look. She’s growing up I suppose ๐Ÿ™‚ . At least she still lets me snuggle her… although she’s starting to fight it! If you made it this far… thanks for taking the time. I’m excited about what this year will bring for all of us. It’s going to be a lot of big changes but that has yet to slow any of us down ๐Ÿ™‚

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