All ready for the zoo.
She was all "crooked smiles" with her swollen lip. She is more resilient than her parents, that's for dang sure.
11.27.2013
..30 seconds.
Thirty seconds...it doesn't seem like a long time, right? But thirty seconds can feel like an eternity depending on the situation. Driving home from a family trip in Gatlinburg this past weekend Chad, Bebe and I were all singing & dancing to music. We were acting like the silly family we are. We try to savor the times we have together and really enjoy each other. Par for the course, I suppose. We grabbed some Starbucks on our way out of town & hopped up on the interstate. I hadn't even taken the green stopper stick out of my coffee when we heard a familiar short scream. It is almost an abridged screaming cry and when I hear it, my heart & lungs generally stop functioning. That quick scream quickly turned into a gargled clicking sound. Chad could see Bebe first as he wheeled around in his seat & I could see the fear overtake his eyes as he's looked at her & yelled out "Oh God, she's having a seizure." In the literal millisecond that it took me to turn around, I started seeing her spitting up blood as her sweet body convulse. Beyond that, I'll be honest, my heart really can't describe the rest of what I saw and I am sure no one is really interested in the details. I do remember yelling at Chad to pull over & call 9-1-1 now. Even though it had been almost 2 full years since her last seizure, this was not the first time we had watched her have a seizure. But, the blood out of her mouth changed everything. I did not know where the blood was coming from and the gargling made me quite concerned that she may be aspirating and that made me very fearful very quickly. Chad quickly pulled to the shoulder of the interstate atop an overpass. I was almost in the backseat from the inside before we even came to a stop. Cars continued to wiz past, funny enough, as if their lives were not standing still like ours. Thirty seconds....for a solid thirty seconds, I panicked. My heart immediately ran down the list of "what if's". There was that instantaneous moment of "am I watching my child die" that entered my brain and I tried to function amidst the chaos of emotions raging inside me. Intellectually and apart from the moment, I fully understand that seizures themselves are normally pretty benign in nature, especially short ones. But emotionally, in that moment, I felt like I was watching my child die. In fact, watching my child on respirators and crazy machines in the past, I actually can not think of anything more difficult to watch than to watch my child seize. My "flesh" was in total control----or out of control, I guess I should say. My emotions were driving me & nothing else in the entire world mattered. I snatched Bebe from her car seat, laid her down in my seat & gave her the Diastat in probably 5 seconds total. I picked her back up & held her close to my body...pacing the emergency lane of an interstate clustered with cars, trucks, SUVs and 18 wheelers flying past. This is where the 30 seconds began to calm...yes, B was still seizing, but "my flesh" finally gave way to the Peace of the Lord. That 30 seconds had been horrible. The feeling of panic & overwhelming fear & complete lack of control. But, the Peace of the Lord came & I could feel myself relax. I continued to pace, which seemed scary before --- but then I realized that onlooking vehicles saw me holding a small child & they parted like the Red Sea. I started praying for our safety as I knew we were not in a safe location & had made an instant & emotion based decision to stop at a dangerous location. I remember looking over the side of the overpass as I paced and spoke to Bebe. For those that know me well know I am literally petrified of heights. I almost chuckled when I looked over thinking how the word petrified really pales in comparison to what I had felt during those 30 seconds. I wasn't even afraid of being on the side of a busy interstate, holding my seizing child, pacing atop an overpass. I wasn't afraid anymore at all. It was about this point when I realized it was literally freezing outside & that both Bebe & I needed to get back inside the vehicle. Emergency workers arrived & transported us to the hospital. On the trip to the hospital, the EMT said "I knew when we arrived that she probably had a history & some really strong parents for that matter, you were so calm." In my head I thought, "Calm, really? Glad you didn't catch the first 30 seconds, dude, you would have thought I was crazy." It was an ordeal, an ordeal with a happy ending. B is fine, she severely bit down on the inside of her upper lip which swelled up to about 3 times its normal size & she dislodged a tooth that they pushed back in place for now. They increased her daily seizure medication (medication that we had planned on weening her off of since she had gone so long without a seizure----guess not). In the big picture, I guess 30 seconds of sheer terror is not really a big deal. Chad, being the amazing man he is, said "they always say she doesn't remember any of this stuff"...to which I softly responded "but unfortunately we do." I hate that I still have the mental image & I am thankful that I have a terrible time of remembering things. I pray that the mental image will fade & it won't stop my heart anymore when it comes to mind. On our way home, Chad & I discussed how we were thankful for so much during the process. I was so grateful that our family was not together---it is hard enough for us to watch..I would not wish for anyone to have to watch her go through this. We recounted how thankful we are that this is not our everyday life. This is not our normal, and unfortunately I know it is for other families. My heart hurts for them & I am amazed by them all at the same time. Chad & I also discussed what a hand God had on us that day. I had literally put her diaper bag (the bag that I almost forgot at home at the first of the weekend---the bag that we didn't really need for the trip home so almost got packed amongst the chaos of our back seat/cargo area---the same bag containing her Diastat) literally within reach of where I was & where she was. Also, in the great distance between Gatlinburg & home, there is a vast interstate of rural America. In the several hours of road, I think there may be 1 - 2 hospitals that would be really understanding of Bebe & our situation. That ambulance ride I told you about, yeah it was literally 10 minutes from where she had her seizure to East Tennessee Children's Hospital in Knoxville. So, we were in just the right place. Because when I get outside of those first 30 seconds, the Lord reminds me that He has everything under control. He goes before us, and behind us, and beside us and with us. I hope there never is a next time, but if there is----I pray that I will get my "I think I have some semblance of control in life & so I am going to take all of the weight of this situation on my shoulders & so I am going to completely flip out" time down from 30 seconds. I know I am human & I fully own that. I am thankful that the Lord is willing to forgive me for my extremely selfish 30 seconds when I thought I could handle it on my own. MAN, oh MAN, does it lift the burden when I take something off my own shoulders & give it back to the Lord. I have said before, Chad & I don't ever really wonder "why us". At the end of the day, the truth is that we don't have any control here. We always pray for B's complete healing. And we know with every ounce of our souls that God is able to do that. Even still, we want our child to be exactly WHO God created her to be. And most of all, we pray that her life touches people and points them to God. She is a miracle---every single day. She is an absolute miracle. And we choose to look at our situation as an opportunity to shine the light of Jesus. We are so grateful that the Lord gave her to us, just the way she is.
Looking quite adorable in her cute little scarf.
Earlier in the weekend, the pure zeal for life she has is infectious!
Finally waking up after the ordeal & still smiling with her sweet lil swollen lip.
She was all "crooked smiles" with her swollen lip. She is more resilient than her parents, that's for dang sure.
She was all "crooked smiles" with her swollen lip. She is more resilient than her parents, that's for dang sure.
9.05.2013
..here we come, four!
As I begin to write this, we are within days of our little Bebe turning four. Four years ago, today, I pretty much only knew I was almost 37 weeks pregnant. Looking back, I still think I knew something was different earlier. I think there was a part of me that knew this would be our journey far before Bebe....even far before I met my husband. I believe the Lord was preparing me years and years in advance. I will never know if it really made me any more "ready". It is funny how four years can change a person so deeply. I see how far our little munchkin has come, how much she has achieved, how many milestones she has accomplished. She is amazing. I am so proud of her.
I talk a lot of facts & achievements & goals & accomplishments on here.....but today, I feel like I just need to talk a bit more about emotion. I guess I am just extra emotional today, so bear with me.
If I am being transparent, I feel a bit at times like I have multiple personalities:
There are these moments at home, when life seems "normal". It is normal for me to have to monitor what she is doing to ensure she is not hurting herself or has not gotten stuck/wedged/etc somewhere. It is normal to have limited communication, making my lack of ESP very apparent. It is normal to have to either fight a lil octopus or dress a limp doll-like human to put her clothes on every day. It is normal to constantly be making sure she isn't near stairs since she has not quite learned how to navigate them yet. It is normal to stop every 2-3 hours to prepare food, feed her food & clean up afterwards. It is normal to have to hold myself down in the seat as she explores and plays outside, petrified that she will hurt herself, but also knowing she has to build independence & self confidence. I actually like "normal". It is still tiring at times, but hey what mom isn't tired, right? Normal far outnumbers the other days, thankfully.
Then there are those days like recently preparing for K4. I looked in the classroom & saw "big kids" doing all sort of "big kid" activities. The tasks and daily play even seemed quite beyond B's achievements and accomplishments and understanding thus far. And I must be honest, my heart sinks a bit on those days. I look at these average kids, not with jealousy, but with a bit of pain in my heart. My heart continues to mend from that ever-decreasing ache deep within that mourns the loss of dreams. I watch these potty trained, agile, communicatory, self-feeding, rule following (well, you know----they at least understand rules at least), rowdy kids.....and then I think of my perfect and tiny baby girl. Those days don't feel "normal", they hurt. No one can change these things, it is what it is....but it doesn't change the fact that it hurts a little. It, in NO way, discounts the AMAZING things Bebe has overcome. She is amazing. This is my heart that hurts, not hers. And it is a secret pain, one of which I guard closer than even the closest to me may ever fully understand. I used to beat myself up over these painful days, but I realize it is okay to feel---even the hurt.
There are days when I see other children who may have the same or similar diagnosis as B. And I see how great she really is doing. I get to experience things with her that some other parents would love to get to experience. Although Bebe is still working on her communication, she definitely engages & interacts & is really present a lot of the time. I know some other parents would love a window into their child's emotions or personality. I get to see (and chase) B walk & now even her recently learned run. I get to hear her make more and more sounds & have every hope that one day she will be speaking. I get to use at least some words to communicate by sign language. So, Bebe gets some sort of a voice in life. There are so many other children that literally have no method of communication. Yes, I feel like 1/2 my life is preparing, feeding & cleaning as it pertains to her food.....but I get to see my kiddo eat, and love to eat at that. I try to remember it is one-on-one face time with her & it is normally just she & I. How many moms get that much focused attention for that long? Right? Those are my thankful days. I am thankful for where we are in this journey & where God has us today.
Then, probably the most multi-faceted days of all...days that have seemed to happen all too often as of late. It seems like there was this small wave of kids with WHS who "earned their wings" as many in the community calls it. I got in this mind-set recently that I could emotionally detach myself from the lost lives by simply making a ridiculous theory. "Well, it seems like only the really sickly kids pass away so young." It only took the face of one little girl, able to bear weight on her feet at a young age, apparently not having a significantly 'sickly' history passing away to blow that idea right out of my head. Some days........(deep breath).......some days hurt so deeply I literally can not express words. Some days it feels like the depth of that pain is so close that it is squeezing my heart to where it can not beat. Some days the thought of that possibility takes my very breath away. It isn't fear, it isn't "what if", I don't really know how to explain it. It just feels like it could be so real, so quickly......it is hard to even verbalize. But to say "my heart breaks" almost feels blasphemous to how deeply it hurts. Those days I would call horror days. I am humbled that I still have her, I am grateful & I hug a little longer, snuggle a little closer, love a little deeper and show a lot more grace/mercy. Because there are these snapshot moments in my brain & even more in my heart that "what if today is it....." I have told the story, and honestly I can not remember if I told it on here before, I apologize if I am repeating myself. B had a febrile seizure (due to a spiking temperature) almost 1.5 years ago. It was her very first seizure and I was calmly concerned. We knew seizures were possible, but thought since she had made it past 2 years old without one, we were in the clear. About a week later, Bebe had an unrelated non-febrile seizure. I remember that trip to the hospital was completely different. She seized the entire ambulance ride there...and I felt myself in a very different place with this round of seizures. Once we arrived at the hospital, she started actively seizing again---after they had already given her a ton of medication. I am usually the stoic and calm one. I handle very stressful situations fairly well. I usually am the phone caller to the grandparents to advise what is going on, because I am the one who can speak clearly & calmly (years of practice with working in the ER/Trauma unit & customer service, I guess). But that night was different. I can safely say, it was my very first face-to-face moment with the most frightening prognosis possibility of this syndrome. I just remember after they asked us to step out of the way to take care of her, I crumpled down in the hallway outside her door. I remember the chaos going on in her room & her teeny body convulsing. In that moment I wanted to take away her pain, but even more than that my heart cried out to the Lord and begged Him not to take her....that I wasn't ready & I could not bear the weight of it. I couldn't even utter words to Chad, let alone call our parents to tell them. That night I was more than scared, I was more than frightened, I was utterly petrified to the core of my soul. I try to not ever relive that night in my head. Bebe got better, her seizures were regulated & she has been great ever since (thank you, Lord!). But, I saw that night (and every time I let my heart get off it's leash) how desperately broken the even mere thought was. Even to the point that I have had to take several breaks from social media because I simply can not be inundated with the reality of other beautiful, amazing, precious kiddos passing away. I can't face that deep dark black hole of pain in my heart. I am thankful that these days are the most rare. However, the conscience & active desire to enjoy every moment I have with her seems to occur every day. She will shine that cheesy grin at me & my heart melts. And it makes me want to take tiny little pictures in my heart & never ever ever ever forget all these perfect moments. I am thankful that these days are few & far between, but with the recent influx in lost lives....it has been more days than usual. But, I choose not to live in fear.
I savor and appreciate those normal days. Normal is absolutely wonderful. Blessed days are great, too. They make me feel a little guilty sometimes, but I remember that God has written a beautiful & unique story for each of His special ones. And I am thankful for their accomplishments & achievements & strengths. And on the painful ones & the horror days, well those are the days when I need a little more Grace from the One Who created her and from the people around me.
I am so grateful the Lord gave Bebe to us. And I try to always remember that even if today were the last day with her...I am thankful for today, then. But MAN am I going to live up tomorrow with her, too. I can't wait to see what all your Creator has written for you, sweet daughter. You are mighty and you were created for greatness. Bebe, you are my beauty, you are my heart, you are my hero, you are my greatest treasure, you are my perfect daughter. I love you, my lil McShooguhnut / Monkey / Bug / Bugguh / Buhbuh / Bebe!
I talk a lot of facts & achievements & goals & accomplishments on here.....but today, I feel like I just need to talk a bit more about emotion. I guess I am just extra emotional today, so bear with me.
If I am being transparent, I feel a bit at times like I have multiple personalities:
There are these moments at home, when life seems "normal". It is normal for me to have to monitor what she is doing to ensure she is not hurting herself or has not gotten stuck/wedged/etc somewhere. It is normal to have limited communication, making my lack of ESP very apparent. It is normal to have to either fight a lil octopus or dress a limp doll-like human to put her clothes on every day. It is normal to constantly be making sure she isn't near stairs since she has not quite learned how to navigate them yet. It is normal to stop every 2-3 hours to prepare food, feed her food & clean up afterwards. It is normal to have to hold myself down in the seat as she explores and plays outside, petrified that she will hurt herself, but also knowing she has to build independence & self confidence. I actually like "normal". It is still tiring at times, but hey what mom isn't tired, right? Normal far outnumbers the other days, thankfully.
Then there are those days like recently preparing for K4. I looked in the classroom & saw "big kids" doing all sort of "big kid" activities. The tasks and daily play even seemed quite beyond B's achievements and accomplishments and understanding thus far. And I must be honest, my heart sinks a bit on those days. I look at these average kids, not with jealousy, but with a bit of pain in my heart. My heart continues to mend from that ever-decreasing ache deep within that mourns the loss of dreams. I watch these potty trained, agile, communicatory, self-feeding, rule following (well, you know----they at least understand rules at least), rowdy kids.....and then I think of my perfect and tiny baby girl. Those days don't feel "normal", they hurt. No one can change these things, it is what it is....but it doesn't change the fact that it hurts a little. It, in NO way, discounts the AMAZING things Bebe has overcome. She is amazing. This is my heart that hurts, not hers. And it is a secret pain, one of which I guard closer than even the closest to me may ever fully understand. I used to beat myself up over these painful days, but I realize it is okay to feel---even the hurt.
There are days when I see other children who may have the same or similar diagnosis as B. And I see how great she really is doing. I get to experience things with her that some other parents would love to get to experience. Although Bebe is still working on her communication, she definitely engages & interacts & is really present a lot of the time. I know some other parents would love a window into their child's emotions or personality. I get to see (and chase) B walk & now even her recently learned run. I get to hear her make more and more sounds & have every hope that one day she will be speaking. I get to use at least some words to communicate by sign language. So, Bebe gets some sort of a voice in life. There are so many other children that literally have no method of communication. Yes, I feel like 1/2 my life is preparing, feeding & cleaning as it pertains to her food.....but I get to see my kiddo eat, and love to eat at that. I try to remember it is one-on-one face time with her & it is normally just she & I. How many moms get that much focused attention for that long? Right? Those are my thankful days. I am thankful for where we are in this journey & where God has us today.
Then, probably the most multi-faceted days of all...days that have seemed to happen all too often as of late. It seems like there was this small wave of kids with WHS who "earned their wings" as many in the community calls it. I got in this mind-set recently that I could emotionally detach myself from the lost lives by simply making a ridiculous theory. "Well, it seems like only the really sickly kids pass away so young." It only took the face of one little girl, able to bear weight on her feet at a young age, apparently not having a significantly 'sickly' history passing away to blow that idea right out of my head. Some days........(deep breath).......some days hurt so deeply I literally can not express words. Some days it feels like the depth of that pain is so close that it is squeezing my heart to where it can not beat. Some days the thought of that possibility takes my very breath away. It isn't fear, it isn't "what if", I don't really know how to explain it. It just feels like it could be so real, so quickly......it is hard to even verbalize. But to say "my heart breaks" almost feels blasphemous to how deeply it hurts. Those days I would call horror days. I am humbled that I still have her, I am grateful & I hug a little longer, snuggle a little closer, love a little deeper and show a lot more grace/mercy. Because there are these snapshot moments in my brain & even more in my heart that "what if today is it....." I have told the story, and honestly I can not remember if I told it on here before, I apologize if I am repeating myself. B had a febrile seizure (due to a spiking temperature) almost 1.5 years ago. It was her very first seizure and I was calmly concerned. We knew seizures were possible, but thought since she had made it past 2 years old without one, we were in the clear. About a week later, Bebe had an unrelated non-febrile seizure. I remember that trip to the hospital was completely different. She seized the entire ambulance ride there...and I felt myself in a very different place with this round of seizures. Once we arrived at the hospital, she started actively seizing again---after they had already given her a ton of medication. I am usually the stoic and calm one. I handle very stressful situations fairly well. I usually am the phone caller to the grandparents to advise what is going on, because I am the one who can speak clearly & calmly (years of practice with working in the ER/Trauma unit & customer service, I guess). But that night was different. I can safely say, it was my very first face-to-face moment with the most frightening prognosis possibility of this syndrome. I just remember after they asked us to step out of the way to take care of her, I crumpled down in the hallway outside her door. I remember the chaos going on in her room & her teeny body convulsing. In that moment I wanted to take away her pain, but even more than that my heart cried out to the Lord and begged Him not to take her....that I wasn't ready & I could not bear the weight of it. I couldn't even utter words to Chad, let alone call our parents to tell them. That night I was more than scared, I was more than frightened, I was utterly petrified to the core of my soul. I try to not ever relive that night in my head. Bebe got better, her seizures were regulated & she has been great ever since (thank you, Lord!). But, I saw that night (and every time I let my heart get off it's leash) how desperately broken the even mere thought was. Even to the point that I have had to take several breaks from social media because I simply can not be inundated with the reality of other beautiful, amazing, precious kiddos passing away. I can't face that deep dark black hole of pain in my heart. I am thankful that these days are the most rare. However, the conscience & active desire to enjoy every moment I have with her seems to occur every day. She will shine that cheesy grin at me & my heart melts. And it makes me want to take tiny little pictures in my heart & never ever ever ever forget all these perfect moments. I am thankful that these days are few & far between, but with the recent influx in lost lives....it has been more days than usual. But, I choose not to live in fear.
I savor and appreciate those normal days. Normal is absolutely wonderful. Blessed days are great, too. They make me feel a little guilty sometimes, but I remember that God has written a beautiful & unique story for each of His special ones. And I am thankful for their accomplishments & achievements & strengths. And on the painful ones & the horror days, well those are the days when I need a little more Grace from the One Who created her and from the people around me.
I am so grateful the Lord gave Bebe to us. And I try to always remember that even if today were the last day with her...I am thankful for today, then. But MAN am I going to live up tomorrow with her, too. I can't wait to see what all your Creator has written for you, sweet daughter. You are mighty and you were created for greatness. Bebe, you are my beauty, you are my heart, you are my hero, you are my greatest treasure, you are my perfect daughter. I love you, my lil McShooguhnut / Monkey / Bug / Bugguh / Buhbuh / Bebe!
9.12.2012
..wow, TONS AND TONS to update!!!!
..okay, wow..i have so much to update on, this may take installments!
..where do i even start..bebe is literally amazing. we just celebrated her 3rd birthday & we count that an absolute miracle..as some of you know (and i may have even mentioned on here, before)..we have heard that nearly 30% of children diagnosed with the syndrome that bebe has been diagnosed with never see their 2nd birthday..and here we are at the 3rd one & going strong..it's probably easiest to compartmentalize all her accomplishments into zones, so here we go..
GROSS MOTOR: we have a walker----no, make that a RUNNER! b has began to walk and even run. she began to walk about a year ago and let me tell you, she is quite mobile & into EVERYTHING!!!! we are still working on the transition from sitting to standing, so if she falls down, she will just look at us to help her stand back up. she actually recently started to crawl (who says you have to crawl before you walk---not bebe)? she rolls & crawls when she falls down & even recently mastered the transition from laying to sitting (yaaaaay!). we are working with her physical therapist now on going up & down stairs..which b is doing great at with help), also stepping over things & squatting. we are so proud of her for learning to bend over to get things, since there was months & months of a walking child who would drop all her toys & then stand there & look at you like "i'm out of toys & can't get those."
FINE MOTOR: we are still really focusing on getting bebe to feed herself. we remain on a soft/blended diet since our ability to chew is still being harnessed. drinking is still a bit of a struggle for us, since the best way to get her to drink is by bottle or syringe. she still does pediasure/heavy cream mixture by a bottle & we are trying several ways to get her to drink other liquids. i think our next step may be thick-it to help with juices & water. for those of you who don't know what that is, it is a powder that makes things like juice & water a consistency like honey or nectar (depending on the amount used). so, it gives her a few extra seconds to figure out how to lift that tongue and push the fluid down her throat (crazy what we take for granted, like automatically doing all that). anyways, so hopefully that may help.
SPEECH: bebe is learning more signs to help her communicate with us her needs & wishes. she signs: more, eat/food/bites, all done, play, night night and dirty (for a stinky diaper---as if we need her to announce that, hahaha). we are still working on: pain, yes, no, please & thank you. we are about to start some new techniques to try and help her get used to her mouth & jaw being in different positions. b's mouth & jaw is formed differently, so it is most comfortable sitting just the way it is. so, we are going to have to get her a little out of her comfort zone. she is noticing her tongue more, which is awesome, but we are still working on really moving it around & using it to make sounds. she is babbling ALOT and says things like" hi, bye & dada. she is definitely imitating more, like making general noised with the same inflection as us, but her lips & tongue don't move so much, so it is her own little version of that word or phrase. she is also doing cute things like throwing her hands on her head when i say "oy vey", throwing her hands in the air when i say "roll tide", humming/babble singing & doing hand motions to childrens songs, etc. she is so smart & i really feel like she is learning to be the articulate little girl that is inside of her. i know she will be so glad when she has the understanding to clearly communicate what she is thinking-----bless us!
GENERAL COGNITIVE: therapists would have her at about a 12-15 month cognitive ability at this point. we are still working on following instructions and things like that. so, in public places, i don't feel comfortable letting her roam, since she is not quite at a place where she would follow my instructions. but, even still, that is progress from where she was before, so we count it as a victory. she'll get there---in her own precious time---she'll get there.
GROWTH: b weighs almost 19 lbs & is almost 33 inches tall. so, she is still a bitty little thing. her clothes still range all over the place, but usually we have to get 12-18 months clothes for the overall length, since she is so long. but then we generally have to take things in or alter them to be slimmer, since she is so lean.
MEDICAL: oh wow...let's see. let's just start head to toe, that is easiest for me to think.
NEUROLOGIST-she had her first seizure in february of this year. we were bummed, because we had made it through the first 2 1/2 years without seizures. we thought we were in the clear. that first seizure was a febrile seizure, due to a spiking fever. they did not feel it was anything to worry about, since average kids have febrile seizures. within that week, that spiking fever turned out to be RSV (first season without synagis & she gets it!). after watching her with the RSV, i was so grateful for all that terrible hard time on synagis. i know before her heart surgery, it absolutely saw how could have taken my baby's life. we were in the hospital for a few days with that. then about a week later, she started having seizures, but not associated with any fever. i can safely say this was one of my breaking points. she was seizing almost constant for what seemed like forever. i broke down in the hallway of the ER, because the reality of the possibility of losing my child hit me like a ton of bricks. i had heard that a major culprit of children who die with Wolf Hirschhorn Syndrome was constant seizures. and all that ran through my head was "dear God, please let this not be the beginning of the end....please don't take my child.....please." i thought my heart had been ripped out of my chest and trampled on the ground. in fact, i couldn't even make my normal "call the grandparents" phone calls, because i literally was a complete wreck. that admission, i didn't really want to see anyone or talk to anyone. it was the reality check of the seriousness of the complications with the syndrome. i still can't really type about it without getting emotional. but the Lord's power is made perfect in my weakness & my oh my was i weak. He took great care of her & the doctors were all wonderful. she is now on a daily medication & is doing terrific. we had one additional seizure, but it was a febrile seizure, a few weeks after that. it actually was her fever spiking due to another terrible respiratory virus that again landed us impatient. the doctors explained it as RSV's horrible big brother on steroids. our little one was TERRIBLY ill with fevers in the 105's. she spent a few days in the critical care unit, thankfully under very watchful care of the amazing staff. and in a weird way, it was nice that i got to go home & sleep at night. the Lord is so good to me to grant me sleep even in the midst of those times. so, that is where we are----ohhhh, and i can't remember if i mentioned it or not, but they can't exactly find that pesky cyst they had found in her brain when she was born---it just, didn't really show up on her MRI. (laughs) ohhh, Lord, you are so funny to just make things disappear.
EAR, NOSE & THROAT-we had chronic ear infections, so like many other little ones---we had to get tubes in our ears. it was actually almost humorous the day of surgery. we were in the little waiting room & the nurse comes in all concerned & so sweet. she kept telling us how everything is going to be okay & there is nothing to be worried about & how it is always harder for the parents than the child. i had to crack up when she left the room. i looked at chad & said, yeah----she has no idea what we've been through, bless her heart. she was so sweet & it wasn't that i was completely un-concerned for my child, but after open-heart surgery when they say things like "so we open her chest, stop her heart from beating, hook her up to a machine that does that for her, fix the problems & then just start the heart back", i'll be honest----a gas mask & tubes in the ears doesn't really effect me so much.
ENDOCRINOLOGY-we started seeing an endocrinologist to monitor her growth & to build a relationship for the possible future of growth hormones. i have seen some families who have had children with Wolf Hirshhorn Syndrome who have had success with growth hormones. so, we wanted to hit the ground running. at her last visit (yesterday), the crna explained that an average child b's age grows at a rate on the scale of about a 5 (don't ask me exactly, it's like a number associated to the rate or something). well, my amazing bebe's rate was on the scale at 13. whaaaat, yeah, she beat her peers at the rate of growth. she grew 2.5 inches by their measurements in only six months, and put on about a pound. now, she did have that bout of turmoil you read earlier with all the sicknesses---so, she lost about 2.5 lbs & then recovered it & another lb. i think that is awesome! we are still years away from even considering growth hormones, but i am still bang up proud of my little one.
CARDIOLOGY-they have told us she is healthy on their end & we just have to go in a couple a years to let them take a look at her again.
GASTROENTEROLOGY-the syndrome seems to effect her growth in a dramatic way..she doesn't absorb calories like the average person..so, it takes more calories for a slower return..so, we are boosting everything she eats with things like extra virgin olive oil, heavy cream, butter, etc. when we can afford it, we also use products call duocal (a powdered calorie) & scandishake (sort of like carnation instant breakfast x 10). i was telling her endo-doctor how i've also switched to feeding her about every 2 to 3 hours & she said "wow, that's a full time job, mom". it's nice when people notice. i told her how preparing, hand feeding & cleaning up seemed to take up so much of my time. i explained it's like the chaos of an active 3 year old with the high-maintance of a newborn. good thing my lil munchkin is worth the constant work. and i know there are lots of mommies & daddies & caretakers that are WAAAAAY busier than i am, so i am grateful. she is still doing pediasure, rather than whole milk, because it is more complete. wish all this special stuff wasn't so dang expensive!
NEPHROLOGY-by ultrasound & blood work, it appears that b's kidneys were not formed as completely as an average child. so, this causes a lower function of her kidneys. we are monitored by the nephrologist, but overall, she is looking great. at last report (about 2 weeks ago), her kidneys had grown with her & her blood work was looking better. yay!
ORTHOPEDIC-bebe was fitted for some custom ankle braces to help her with her intense overpronation. that is where her feet roll in. b's was so significant that at times her inner ankle would almost be on the ground. so, the braces help to align her feet correctly and support her arch. she doesn't even notice them now & does great using them. they are quite minimal & have worked great. i can even tell when she isn't wearing them, her stance is better.
PEDIATRIC-we go for her annual check up next week. we so adore her pediatrician. thankfully, we haven't had to visit much lately, so she will be so excited to see bebe. she is just as proud of her as we are. i think bebe may just be one of her favs---just sayin.
PHEEEW!!!! that is the basic (hahahahahaha) update on the sweet child..but more than anything, after all these "facts" and such..i must say how extremely proud i am of that child. she is the toughest & most determined soul i know. doctors put limitations, she has blasted them. i think she will continue to do that & i think she may just change statistics along the way. we have high expectations of her & don't let her quit...but she puts in more heart, soul & effort than we could even expect from a 3 year old. man, has God got a story He is writing in her & through her. i'm so privileged to be a part of it.
..k, that was alot, so i am going to shut up now. i really am going to try and be more on top of this!!! *laughs*
..where do i even start..bebe is literally amazing. we just celebrated her 3rd birthday & we count that an absolute miracle..as some of you know (and i may have even mentioned on here, before)..we have heard that nearly 30% of children diagnosed with the syndrome that bebe has been diagnosed with never see their 2nd birthday..and here we are at the 3rd one & going strong..it's probably easiest to compartmentalize all her accomplishments into zones, so here we go..
GROSS MOTOR: we have a walker----no, make that a RUNNER! b has began to walk and even run. she began to walk about a year ago and let me tell you, she is quite mobile & into EVERYTHING!!!! we are still working on the transition from sitting to standing, so if she falls down, she will just look at us to help her stand back up. she actually recently started to crawl (who says you have to crawl before you walk---not bebe)? she rolls & crawls when she falls down & even recently mastered the transition from laying to sitting (yaaaaay!). we are working with her physical therapist now on going up & down stairs..which b is doing great at with help), also stepping over things & squatting. we are so proud of her for learning to bend over to get things, since there was months & months of a walking child who would drop all her toys & then stand there & look at you like "i'm out of toys & can't get those."
FINE MOTOR: we are still really focusing on getting bebe to feed herself. we remain on a soft/blended diet since our ability to chew is still being harnessed. drinking is still a bit of a struggle for us, since the best way to get her to drink is by bottle or syringe. she still does pediasure/heavy cream mixture by a bottle & we are trying several ways to get her to drink other liquids. i think our next step may be thick-it to help with juices & water. for those of you who don't know what that is, it is a powder that makes things like juice & water a consistency like honey or nectar (depending on the amount used). so, it gives her a few extra seconds to figure out how to lift that tongue and push the fluid down her throat (crazy what we take for granted, like automatically doing all that). anyways, so hopefully that may help.
SPEECH: bebe is learning more signs to help her communicate with us her needs & wishes. she signs: more, eat/food/bites, all done, play, night night and dirty (for a stinky diaper---as if we need her to announce that, hahaha). we are still working on: pain, yes, no, please & thank you. we are about to start some new techniques to try and help her get used to her mouth & jaw being in different positions. b's mouth & jaw is formed differently, so it is most comfortable sitting just the way it is. so, we are going to have to get her a little out of her comfort zone. she is noticing her tongue more, which is awesome, but we are still working on really moving it around & using it to make sounds. she is babbling ALOT and says things like" hi, bye & dada. she is definitely imitating more, like making general noised with the same inflection as us, but her lips & tongue don't move so much, so it is her own little version of that word or phrase. she is also doing cute things like throwing her hands on her head when i say "oy vey", throwing her hands in the air when i say "roll tide", humming/babble singing & doing hand motions to childrens songs, etc. she is so smart & i really feel like she is learning to be the articulate little girl that is inside of her. i know she will be so glad when she has the understanding to clearly communicate what she is thinking-----bless us!
GENERAL COGNITIVE: therapists would have her at about a 12-15 month cognitive ability at this point. we are still working on following instructions and things like that. so, in public places, i don't feel comfortable letting her roam, since she is not quite at a place where she would follow my instructions. but, even still, that is progress from where she was before, so we count it as a victory. she'll get there---in her own precious time---she'll get there.
GROWTH: b weighs almost 19 lbs & is almost 33 inches tall. so, she is still a bitty little thing. her clothes still range all over the place, but usually we have to get 12-18 months clothes for the overall length, since she is so long. but then we generally have to take things in or alter them to be slimmer, since she is so lean.
MEDICAL: oh wow...let's see. let's just start head to toe, that is easiest for me to think.
NEUROLOGIST-she had her first seizure in february of this year. we were bummed, because we had made it through the first 2 1/2 years without seizures. we thought we were in the clear. that first seizure was a febrile seizure, due to a spiking fever. they did not feel it was anything to worry about, since average kids have febrile seizures. within that week, that spiking fever turned out to be RSV (first season without synagis & she gets it!). after watching her with the RSV, i was so grateful for all that terrible hard time on synagis. i know before her heart surgery, it absolutely saw how could have taken my baby's life. we were in the hospital for a few days with that. then about a week later, she started having seizures, but not associated with any fever. i can safely say this was one of my breaking points. she was seizing almost constant for what seemed like forever. i broke down in the hallway of the ER, because the reality of the possibility of losing my child hit me like a ton of bricks. i had heard that a major culprit of children who die with Wolf Hirschhorn Syndrome was constant seizures. and all that ran through my head was "dear God, please let this not be the beginning of the end....please don't take my child.....please." i thought my heart had been ripped out of my chest and trampled on the ground. in fact, i couldn't even make my normal "call the grandparents" phone calls, because i literally was a complete wreck. that admission, i didn't really want to see anyone or talk to anyone. it was the reality check of the seriousness of the complications with the syndrome. i still can't really type about it without getting emotional. but the Lord's power is made perfect in my weakness & my oh my was i weak. He took great care of her & the doctors were all wonderful. she is now on a daily medication & is doing terrific. we had one additional seizure, but it was a febrile seizure, a few weeks after that. it actually was her fever spiking due to another terrible respiratory virus that again landed us impatient. the doctors explained it as RSV's horrible big brother on steroids. our little one was TERRIBLY ill with fevers in the 105's. she spent a few days in the critical care unit, thankfully under very watchful care of the amazing staff. and in a weird way, it was nice that i got to go home & sleep at night. the Lord is so good to me to grant me sleep even in the midst of those times. so, that is where we are----ohhhh, and i can't remember if i mentioned it or not, but they can't exactly find that pesky cyst they had found in her brain when she was born---it just, didn't really show up on her MRI. (laughs) ohhh, Lord, you are so funny to just make things disappear.
EAR, NOSE & THROAT-we had chronic ear infections, so like many other little ones---we had to get tubes in our ears. it was actually almost humorous the day of surgery. we were in the little waiting room & the nurse comes in all concerned & so sweet. she kept telling us how everything is going to be okay & there is nothing to be worried about & how it is always harder for the parents than the child. i had to crack up when she left the room. i looked at chad & said, yeah----she has no idea what we've been through, bless her heart. she was so sweet & it wasn't that i was completely un-concerned for my child, but after open-heart surgery when they say things like "so we open her chest, stop her heart from beating, hook her up to a machine that does that for her, fix the problems & then just start the heart back", i'll be honest----a gas mask & tubes in the ears doesn't really effect me so much.
ENDOCRINOLOGY-we started seeing an endocrinologist to monitor her growth & to build a relationship for the possible future of growth hormones. i have seen some families who have had children with Wolf Hirshhorn Syndrome who have had success with growth hormones. so, we wanted to hit the ground running. at her last visit (yesterday), the crna explained that an average child b's age grows at a rate on the scale of about a 5 (don't ask me exactly, it's like a number associated to the rate or something). well, my amazing bebe's rate was on the scale at 13. whaaaat, yeah, she beat her peers at the rate of growth. she grew 2.5 inches by their measurements in only six months, and put on about a pound. now, she did have that bout of turmoil you read earlier with all the sicknesses---so, she lost about 2.5 lbs & then recovered it & another lb. i think that is awesome! we are still years away from even considering growth hormones, but i am still bang up proud of my little one.
CARDIOLOGY-they have told us she is healthy on their end & we just have to go in a couple a years to let them take a look at her again.
GASTROENTEROLOGY-the syndrome seems to effect her growth in a dramatic way..she doesn't absorb calories like the average person..so, it takes more calories for a slower return..so, we are boosting everything she eats with things like extra virgin olive oil, heavy cream, butter, etc. when we can afford it, we also use products call duocal (a powdered calorie) & scandishake (sort of like carnation instant breakfast x 10). i was telling her endo-doctor how i've also switched to feeding her about every 2 to 3 hours & she said "wow, that's a full time job, mom". it's nice when people notice. i told her how preparing, hand feeding & cleaning up seemed to take up so much of my time. i explained it's like the chaos of an active 3 year old with the high-maintance of a newborn. good thing my lil munchkin is worth the constant work. and i know there are lots of mommies & daddies & caretakers that are WAAAAAY busier than i am, so i am grateful. she is still doing pediasure, rather than whole milk, because it is more complete. wish all this special stuff wasn't so dang expensive!
NEPHROLOGY-by ultrasound & blood work, it appears that b's kidneys were not formed as completely as an average child. so, this causes a lower function of her kidneys. we are monitored by the nephrologist, but overall, she is looking great. at last report (about 2 weeks ago), her kidneys had grown with her & her blood work was looking better. yay!
ORTHOPEDIC-bebe was fitted for some custom ankle braces to help her with her intense overpronation. that is where her feet roll in. b's was so significant that at times her inner ankle would almost be on the ground. so, the braces help to align her feet correctly and support her arch. she doesn't even notice them now & does great using them. they are quite minimal & have worked great. i can even tell when she isn't wearing them, her stance is better.
PEDIATRIC-we go for her annual check up next week. we so adore her pediatrician. thankfully, we haven't had to visit much lately, so she will be so excited to see bebe. she is just as proud of her as we are. i think bebe may just be one of her favs---just sayin.
PHEEEW!!!! that is the basic (hahahahahaha) update on the sweet child..but more than anything, after all these "facts" and such..i must say how extremely proud i am of that child. she is the toughest & most determined soul i know. doctors put limitations, she has blasted them. i think she will continue to do that & i think she may just change statistics along the way. we have high expectations of her & don't let her quit...but she puts in more heart, soul & effort than we could even expect from a 3 year old. man, has God got a story He is writing in her & through her. i'm so privileged to be a part of it.
..k, that was alot, so i am going to shut up now. i really am going to try and be more on top of this!!! *laughs*
b's18 month pictures:
1st day of school:
1st big girl hair cut:
School picture day:
Easter egg hut at school:
beach trip:
1st zoo trip:
1st carousel ride:
birthday party day:
i just can't believe she's THREE!!!
happy birthday, baby girl!
2.28.2011
..we were working on standing.
Bebe was working with her Physical Therapist the other day and she was working on standing. Her Physical Therapist would press slightly down on B's hips to plant her heels down on the ground. Bebe did so amazingly and would stand on her own for a good 4 seconds. So, when Chad got home (about 1/2 way through the session), we wanted to show him how well B had done. So, her Physical Therapist was showing Chad the technique and all she took her hands off of Bebe's hips. To which, B decided to take like 3 steps towards Chad all on her own. We all just sat there wide eyed. FIRST STEPS, SERIOUSLY!!! So, her Physical Therapist was like "We were working on standing, but if you wanna walk....." It was so funny & so sweet that Chad & I were both there for her first official steps. I am so very proud of her. We continued to work on it & are still working on it. She is standing better and better & we know she'll be off and running soon enough. That kid is amazing. Her Physical Therapist suggested we get some good supportive running-style shoe to help her pronation (her little inner ankles were almost touching the ground when she stood). You can see the picture below of her "big girl shoes". It took her a few days to get used to them, but now she loves them. Good thing, since she has to wear them like all the time. :)
Also, when we went back to the doctor, we verified that she hasn't really gained weight since November. She is still holding strong at 14lbs. So, we will be going to see a pediatric Gastrointerologist and a Nutritionist. Since her sweet little heart is all better, I'm ready to dose this kid up with some calories! She is still eating, which is sort of a miracle in itself (many WHS kids have PegTubes). We will see what they say about it.
We also have decided to participate in the Walk Without Limits Walk to help support United Cerebral Palsy of Birmingham. Although Bebe does not have Cerebral Palsy, UCP Birmingham facilitates "Hand in Hand" (http://www.ucpbham.com/our-programs/hand-in-hand.html), which is B's Early Intervention Program. They provide Bebe with in-home Physical Therapy, Occupational Therapy & Speech Therapy at no out of pocket cost to us. I can not really express how important this is to us, since precious children with special needs tend to have so many medical bills. Without this program, I am unsure of how much therapy we could actually provide for her. Hand in Hand bills the insurance and UCP's funding continues to provide services to us when insurance stops paying these services (there are generally very specific and narrow limitations to therapies under most insurance plans). B has been in the Hand in Hand program for an entire year and has truly been an integral part of Bebe's ongoing developmental successful. They help teach us how to most effectively teach her. I understand that many state budgets are being cut, which appear to be filtering down to this amazing program.
If you feel led to help support our efforts, please visit our fundraisting page at http://www.firstgiving.com/fundraiser/bevynmaple/race-without-limits. Also, if you'd like to walk with us---PLEASE let me know. We would LOVE LOVE LOVE to have you with us!
Thank you all for the prayers & support.
Also, when we went back to the doctor, we verified that she hasn't really gained weight since November. She is still holding strong at 14lbs. So, we will be going to see a pediatric Gastrointerologist and a Nutritionist. Since her sweet little heart is all better, I'm ready to dose this kid up with some calories! She is still eating, which is sort of a miracle in itself (many WHS kids have PegTubes). We will see what they say about it.
We also have decided to participate in the Walk Without Limits Walk to help support United Cerebral Palsy of Birmingham. Although Bebe does not have Cerebral Palsy, UCP Birmingham facilitates "Hand in Hand" (http://www.ucpbham.com/our-programs/hand-in-hand.html), which is B's Early Intervention Program. They provide Bebe with in-home Physical Therapy, Occupational Therapy & Speech Therapy at no out of pocket cost to us. I can not really express how important this is to us, since precious children with special needs tend to have so many medical bills. Without this program, I am unsure of how much therapy we could actually provide for her. Hand in Hand bills the insurance and UCP's funding continues to provide services to us when insurance stops paying these services (there are generally very specific and narrow limitations to therapies under most insurance plans). B has been in the Hand in Hand program for an entire year and has truly been an integral part of Bebe's ongoing developmental successful. They help teach us how to most effectively teach her. I understand that many state budgets are being cut, which appear to be filtering down to this amazing program.
If you feel led to help support our efforts, please visit our fundraisting page at http://www.firstgiving.com/fundraiser/bevynmaple/race-without-limits. Also, if you'd like to walk with us---PLEASE let me know. We would LOVE LOVE LOVE to have you with us!
Thank you all for the prayers & support.
2.09.2011
..let the blogging begin.
Well, here we are. I finally started a blog to chart the amazing journey we are walking through. As you can see, I have pulled all the old posts that I had listed on Facebook over to the blog. I definitely feel excited about being able to share our journey and our walk with others. And to be quite honest, it's sort of therapeutic for me. I know we are not just walking through this for us, it is for others too. So, let me sort of catch everyone up to date.
Spiritually: Chad & I are coming together for what we are calling "our crazy prayer". We are praying for full & complete healing of Bebe. Head to toe, inside and out, whole and complete. It sounds crazy, we realize. But, it's not too big for God. So, hey, why not just go ahead & believe in something that can ONLY be done by God. So, we are not only praying, we are believing. And if His plan is even BIGGER than just a mere healing---that's good too. Ultimately, He has some sort of plan for B. I can't wait to see it all unfold.
Medically: We have a wealth of doctors now on board to face the medical side of the syndrome. We, of course, have her pediatrician. We don't see her much more than the average child, except for this time of year. Bebe gets a Synagis shot each month. Synagis is also what you may hear me refer to as her "platinum shot". That would be because each month's dose is about $2,000.00. Yes, you read that correctly. Thankfully, she only has to have it about 5 months a year. Synagis helps her body combat RSV. If she were to get RSV, the shot would help make her case less severe. Last year & this year, RSV could be fatal for B. So, we get this shot to keep her a little safer. Next, we have been put out to about every 9 months with her Cardiologist. That is down from about every 1-3 months. Since the surgery was so successful, they feel we can back off follow up visits. We also have a geneticist on board. He seemed extremely pleased by how well she was doing & her overall strength. He set us up with a Neurologist and an Endocrinologist. We will see them in the summer. He also explained that one of the biggest fatal complications with WHS (Wolf Hirschhorn) has to do with renal issues. So, he set Bebe up for a renal ultrasound. The ultrasound showed "some bright spots". Because of this, they want us to follow up with a Neurologist. They said they did a little research and found another little girl with WHS who also showed these "bright spots" in her ultrasound. They followed her & found that by about 5 years old, the spots had completely gone away. She had no renal issues. So, we are just praying that whatever these "bright spots" are (which my dad calls her fairy dust) going to just disappear. God can do it, no biggie. The way we view it, we don't mind getting new doctors on board. We view it as a bigger audience to watch what God has in store. So, bring em on! Let's see.....I think that is all of our medical team. The ones we have met already are great. They all have a similar pleasant surprise to them as they watch B flourish. Her pediatrician is a believer already, and so I think she REALLY understands that it is all God---to HIM be ALL the glory! And we thank Him for our fantastic medical team to help us out.
Developmentally: We are now working with physical therapy, occupational therapy & speech therapy. We have the great opportunity to work with "Hand in Hand" and they are simply amazing. Bebe learned to sit on her own by 11 months, she is standing for a few seconds by herself, she is instigating attempting to walk, she is babbling & jabbering......she really is remarkable. WHS is quite broad spectrum and all the amazing people with WHS are different. There are WHS folks who are unable to speak or walk, there are WHS folks that are able to speak in short sentences & help with daily functions. Heck, even "average" children's learning rates are quite different. So, it is similar in the "special needs" arena, as well. I am encouraged that B is really progressing & becoming more "present" every day. The first year, she was quite disconnected from the world. At home & with family, she would open a little. But, she has really come out of her shell. We are so encouraged by her fabulous progress. There is just no telling how much Bebe is going to end up being able to do.
Life: Life is challenging & busy. But, that little one is so worth it. I guess it just feels like life as usual. We don't really know any other way. When we are overwhelmed, God always finds a way to encourage us. We are so very blessed. Sometimes I almost can't contain my emotions about it. I am so proud of B & I am so excited about what God has done and is GOING to do........can hardly contain it!
Spiritually: Chad & I are coming together for what we are calling "our crazy prayer". We are praying for full & complete healing of Bebe. Head to toe, inside and out, whole and complete. It sounds crazy, we realize. But, it's not too big for God. So, hey, why not just go ahead & believe in something that can ONLY be done by God. So, we are not only praying, we are believing. And if His plan is even BIGGER than just a mere healing---that's good too. Ultimately, He has some sort of plan for B. I can't wait to see it all unfold.
Medically: We have a wealth of doctors now on board to face the medical side of the syndrome. We, of course, have her pediatrician. We don't see her much more than the average child, except for this time of year. Bebe gets a Synagis shot each month. Synagis is also what you may hear me refer to as her "platinum shot". That would be because each month's dose is about $2,000.00. Yes, you read that correctly. Thankfully, she only has to have it about 5 months a year. Synagis helps her body combat RSV. If she were to get RSV, the shot would help make her case less severe. Last year & this year, RSV could be fatal for B. So, we get this shot to keep her a little safer. Next, we have been put out to about every 9 months with her Cardiologist. That is down from about every 1-3 months. Since the surgery was so successful, they feel we can back off follow up visits. We also have a geneticist on board. He seemed extremely pleased by how well she was doing & her overall strength. He set us up with a Neurologist and an Endocrinologist. We will see them in the summer. He also explained that one of the biggest fatal complications with WHS (Wolf Hirschhorn) has to do with renal issues. So, he set Bebe up for a renal ultrasound. The ultrasound showed "some bright spots". Because of this, they want us to follow up with a Neurologist. They said they did a little research and found another little girl with WHS who also showed these "bright spots" in her ultrasound. They followed her & found that by about 5 years old, the spots had completely gone away. She had no renal issues. So, we are just praying that whatever these "bright spots" are (which my dad calls her fairy dust) going to just disappear. God can do it, no biggie. The way we view it, we don't mind getting new doctors on board. We view it as a bigger audience to watch what God has in store. So, bring em on! Let's see.....I think that is all of our medical team. The ones we have met already are great. They all have a similar pleasant surprise to them as they watch B flourish. Her pediatrician is a believer already, and so I think she REALLY understands that it is all God---to HIM be ALL the glory! And we thank Him for our fantastic medical team to help us out.
Developmentally: We are now working with physical therapy, occupational therapy & speech therapy. We have the great opportunity to work with "Hand in Hand" and they are simply amazing. Bebe learned to sit on her own by 11 months, she is standing for a few seconds by herself, she is instigating attempting to walk, she is babbling & jabbering......she really is remarkable. WHS is quite broad spectrum and all the amazing people with WHS are different. There are WHS folks who are unable to speak or walk, there are WHS folks that are able to speak in short sentences & help with daily functions. Heck, even "average" children's learning rates are quite different. So, it is similar in the "special needs" arena, as well. I am encouraged that B is really progressing & becoming more "present" every day. The first year, she was quite disconnected from the world. At home & with family, she would open a little. But, she has really come out of her shell. We are so encouraged by her fabulous progress. There is just no telling how much Bebe is going to end up being able to do.
Life: Life is challenging & busy. But, that little one is so worth it. I guess it just feels like life as usual. We don't really know any other way. When we are overwhelmed, God always finds a way to encourage us. We are so very blessed. Sometimes I almost can't contain my emotions about it. I am so proud of B & I am so excited about what God has done and is GOING to do........can hardly contain it!
11.30.2010
..open heart surgery 0, bebe & God 1
I love going back and reading this story from the beginning. It is so obvious that God has really been in this the WHOLE time. Here we are, almost 15 months after our world changed completely. Our sweet Bebe has truly been more of a trooper than we can really even put into words. And, there is no way we can even begin to give God the glory that He deserves.
November 4th was an amazing day. B had her open heart surgery to correct her VSD, ASD & Pulmonary Stenosis. She did amazing. In fact, she did so well, she was off of the ventilator within a few hours and they were trying to kick us out of the ICU first thing the next morning. She had surgery on Thursday and went home on Sunday. I still can’t wrap my head completely around that. Through the entire surgery and stay, it was so evident for me and Chad that we were being deeply and sincerely prayed for. Thank EACH of you who took your time and efforts to pray for us. It was TRULY felt. We were so protected against fear. I rehearsed that moment of giving Bebe to the nurse to take her back to the O.R. about a million times in my head. And every time I’d rehearse it, I’d feel this emotion and pain whelm up in me. I would almost be paralyzed by how scary that exact moment felt in my mind. Funny, that morning, it wasn’t like I was just putting her in the arms of the nurse; I was really putting her in the arms of God. And, to be very truthful, it was almost easy in the moment. That’s TOTALLY God right there! We were so calm and peaceful during the entire process. Chad and I would quietly whisper to each other during the wait that we knew God had some serious peace on us, because we were so calm. Rationally, we knew that didn’t make sense. We knew it wasn’t natural, it was SUPERnatural.
The night before her surgery, God gave me the most precious time with my little girl. I went into her dark bedroom and had the opportunity to quietly rock her and pray over her and the hospital staff. It was clear to me that she knew something was going on, on some level. The days before and after surgery, she saw TONS of her angels. The angelic activity was more than normal. (Bebe often watches her angels; she has since she was wee tiny). She would look off in the room and just giggle. She’d follow “something” across the room and just giggle at it and smile. I knew she was watching her angels. I would tell her not to worry, that even when Mommy & Daddy couldn’t go with her into surgery, they would be with her the whole time. So, that night, as I quietly prayed over her, she was very aware of me and her “invisible friends”. It was then I felt stirred to pray the absolute most difficult and painful prayer I’ve ever prayed. I told God, out loud, from the depths of my heart what I truly felt in that moment, “God, if it was only 14 months that You gave me with my little angel, I will say thank You. If You give me 14 years with her, I will say thank You. If you give me 90 years with her, I will say thank You. Tomorrow isn’t promised for any of us, and I truly appreciate even a moment with this precious gift of a daughter. She has forever changed me.” I still get misty eyed, because of the truth that I’ve realized over this last 15 months. To TRULY let her go and give her to God meant COMPLETELY. That meant it was His plan, His time and His purpose, not mine. That was a difficult place to get to, especially when I realize that could ultimately mean healing in the form of being heavenly bound. In fact, I have to get there over and over again as time goes on. I always remember that she is HIS first and foremost. I couldn’t love her more, my heart would burst, but it doesn’t hold a candle to how much He loves her. All in all, He has already accomplished great things in her and has more in store. We were able to share the love of Christ and her amazing story with staff in the hospital. And we were able to take home a healthier child than when we came in with. Her recovery is going well and she has been a great patient. I have really enjoyed the extra time I have gotten to actually enjoy her.
So……15 months and there’s still been so many questions. I think all of us were hoping that the heart condition was the reason for her small size, slow growth & delayed development. Chad & I have always had our suspicions that the heart condition was a symptom and not the cause. And our suspicions were found to be true when we were contacted last week to advise us that some of her additional genetic testing was completely and they finally had a diagnosis. I remember sitting there thinking “okay….here we go….we have a name, a reason, a direction, SOMETHING” The genetics lady proceeds to tell me that B has been diagnosed with an extremely rare genetic disorder called Wolf-Hirschhorn Syndrome (also known as 4P-). **Now before any of you go and “google” the syndrome, please allow me to say some things first. These things are extremely important to us.** Please know that Chad & I have done some research and we are fully aware there are some statistics, concerns, risks and scares about this syndrome. In saying that, we also intimately know, serve and trust God, Who is far bigger than any of them. And our faith is in Him. See, our precious child has overcome every odd that has been presented to her. Many of her doctors didn’t expect much from her in the beginning. Some of them never thought she’d make it. But see, our God is greater. She did make it, and not only did she make it, she’s been knocking it out! Why? Because no one, and I mean NO ONE writes the journey of our child, except for God..no doctor, no website, no research and no statistic. God is THE God of her journey. So when the genetics lady says “She’s been diagnosed with Wolf-Hirschhorn. I’m so sorry; I know it is probably not what you would have liked to have heard. And, I want you to know that you didn’t do anything wrong. This is just how she is. You didn’t do anything wrong during the pregnancy and you didn’t do anything wrong since she’s been born.” I suppose my flesh felt good when she said that. That deep mommy aspect needed to hear it wasn’t from drinking too much caffeine or forgetting my pre-natal vitamins a day or two or being sick or not finding out I was pregnant until 8 weeks in. But far more than that, I actually had one of those “out of the abundance of the heart, the mouth speaks” moments. Because, I instantly responded in love and peace (which I assure you was God in me, NOT just me) saying “You’re right, she is exactly who and what she is supposed to be. Because my God knit her together in my womb and NOTHING was hidden from Him----not even the arm of her 4th chromosome. And I can only believe that He knew this and has a special plan and purpose for her life.” To which I heard a “well, okay” from the other side of the line. Anyone who truly knows me knows I am as transparent as possible, so please understand; I am being very transparent in this. The hours after that call were definitely emotional. I mean, I’m only human. Having to explain the news to my amazingly strong husband (who God had already prepared to be the “strong one” that night) caused any underlying emotion to flood out of me. During those hours, I was again met with the realization that her life, our life, parenthood, none of it looked like what I expected. I didn’t remember dreaming of having a special needs child when I was a little girl. It was like someone had a dimmer switch on all those hopes and desires I had for my daughter..big dreams and little dreams. Not too long after finding out, I needed to go to the hospital to visit my brother that night and I cried the entire trip. I spoke out loud to God and told Him how I wanted her to be able to communicate, and crawl, and walk, and go to school, and participate, and make friends, and go to college, and fall in love, and be independent, and get married, and be a mommy……….and all of those visions were dimming. To be honest, a part of my heart dimmed in those moments, too. I was angry that I couldn’t just have a healthy child like “everyone else” (like EVERYONE in the world has healthy babies or something??). I was hurt that God hadn’t just done one of those lightning bolt healing jobs on her. I knew He was able. I had so much faith, but He hadn’t done what I wanted. And deeper still, I was afraid of losing more than just my dreams….as I pressed deeper into my emotions and pain, I realized the biggest fear still came back to my fear of losing my daughter whom I love so dearly. It was an awful and painful drive. But that still small voice and comfort wiggled His way through the chaos of my flesh and spoke to me. There have been few times I can say I truly felt like I heard the voice of God clearly. But this was one of them. As I went over all MY dreams and MY desires for Bebe and how they all felt dashed. I felt Him ask me what the heart of my pain was. And the only thing I could really figure out was that---I am a mommy. I want what is best for her. I want her to have the best life possible. I want her to be the best Bebe that she can possibly be. And that same voice simply said, “Then what’s changed?” Y’all, I have to say, it was one of those moments in life. One of those moments when it all made sense. NOTHING had changed. I still want the core of all of that for B. I still want the best for her. I still want her to have the best life possible. I still want her to be the best Bebe that she can possibly be. So in that regard, NOTHING has changed--except for me. God is continuing to teach me how to pull my own expectations off of B. And the beautiful thing is, these last few days, I have fallen more in love with her--the real her--the one that isn’t being measured up to what I expect of her. I am just allowing her to be her----and she is amazing. How could I have thought I would be disappointed? I will say, she will be expected to do her absolute best. That is not a negotiation in our home. She will be expected to not give up and to give her all. But what that looks like----well, is what it looks like. And I have been again overwhelmed by humility and honor that God looked out over time and space---and He saw Chad & I---and He said “THEY can do this.” It is an HONOR to be her mom. It’s an HONOR that God thinks we are strong enough for this. And there are moments and days that I fear He overestimated us. But, He always gives us enough strength, energy, drive, courage & perseverance to keep pushing ahead. She’s so worth it..at only 14lbs, in only 14 months, that child has touched more lives than I’ve been able to in almost 31 years. And that is worth the uphill walk. To share just ONE of the most recent “GOD MOMENTS”—the Wednesday before Thanksgiving (the day after my initial emotional rollercoaster day), I woke up with renewed hope. I called Bebe’s pediatrician’s office and leave a message with the nurse that I have grown to really appreciate. I was explaining the syndrome so B’s doctor could go ahead and be researching it. And I told the nurse to please tell the doctor that we are not in denial, we fully understand the statistics and the syndrome…and we are still okay. I told her about the story of the phone call with genetics (as I explained it above). And I told her what I said in response, about “You’re right, she is exactly who and what she is supposed to be. Because my God knit her together in my womb and NOTHING was hidden from Him----not even arm of her 4th chromosome. And I can only believe that He knew this and has a special plan and purpose for her life.” There was dead silence on the line. To which, I thought, “Oh Lord, I’ve offended her---have I talked about You to her before?” And a small “Thank you, Lori” came over the phone line back to me. I answered her statement with the same words in a question…”Thank You?” She said it, again. “Yes. Thank you, Lori. We recently lost our child to a chromosome defect. I’ve made peace with it before, but God knew I needed a little extra dose of peace today of all days. So, thank you.” I had to sit down immediately. I was crying, she was crying. In that moment, it clicked……THIS is “why”--for moments like these--for lives like these--for the opportunity to share God’s glory and peace. And if it brings honor and glory to God to walk through this journey----it’s worth it. Not only is it worth it, but I’ll do it every single day for the rest of my life if it’s for His glory. Our daughter’s life is bigger than just one person or just one life. She seems to touch every life she comes into contact with. So, who am I to question why God does what He does? Who am I to accept what man says over my child? Who am I to underestimate God’s plan and purpose? NOTHING was hidden from Him when the God of all creation personally and intimately knit Bebe together. NOTHING. And I am excited to watch my child continue to beat every odd given to her, to continue to reach innumerable people and to continue to fulfill the destiny that even I (yes, LORI, her own mother) underestimated.
Look out, world…our little B is truly our warrior princess!
November 4th was an amazing day. B had her open heart surgery to correct her VSD, ASD & Pulmonary Stenosis. She did amazing. In fact, she did so well, she was off of the ventilator within a few hours and they were trying to kick us out of the ICU first thing the next morning. She had surgery on Thursday and went home on Sunday. I still can’t wrap my head completely around that. Through the entire surgery and stay, it was so evident for me and Chad that we were being deeply and sincerely prayed for. Thank EACH of you who took your time and efforts to pray for us. It was TRULY felt. We were so protected against fear. I rehearsed that moment of giving Bebe to the nurse to take her back to the O.R. about a million times in my head. And every time I’d rehearse it, I’d feel this emotion and pain whelm up in me. I would almost be paralyzed by how scary that exact moment felt in my mind. Funny, that morning, it wasn’t like I was just putting her in the arms of the nurse; I was really putting her in the arms of God. And, to be very truthful, it was almost easy in the moment. That’s TOTALLY God right there! We were so calm and peaceful during the entire process. Chad and I would quietly whisper to each other during the wait that we knew God had some serious peace on us, because we were so calm. Rationally, we knew that didn’t make sense. We knew it wasn’t natural, it was SUPERnatural.
The night before her surgery, God gave me the most precious time with my little girl. I went into her dark bedroom and had the opportunity to quietly rock her and pray over her and the hospital staff. It was clear to me that she knew something was going on, on some level. The days before and after surgery, she saw TONS of her angels. The angelic activity was more than normal. (Bebe often watches her angels; she has since she was wee tiny). She would look off in the room and just giggle. She’d follow “something” across the room and just giggle at it and smile. I knew she was watching her angels. I would tell her not to worry, that even when Mommy & Daddy couldn’t go with her into surgery, they would be with her the whole time. So, that night, as I quietly prayed over her, she was very aware of me and her “invisible friends”. It was then I felt stirred to pray the absolute most difficult and painful prayer I’ve ever prayed. I told God, out loud, from the depths of my heart what I truly felt in that moment, “God, if it was only 14 months that You gave me with my little angel, I will say thank You. If You give me 14 years with her, I will say thank You. If you give me 90 years with her, I will say thank You. Tomorrow isn’t promised for any of us, and I truly appreciate even a moment with this precious gift of a daughter. She has forever changed me.” I still get misty eyed, because of the truth that I’ve realized over this last 15 months. To TRULY let her go and give her to God meant COMPLETELY. That meant it was His plan, His time and His purpose, not mine. That was a difficult place to get to, especially when I realize that could ultimately mean healing in the form of being heavenly bound. In fact, I have to get there over and over again as time goes on. I always remember that she is HIS first and foremost. I couldn’t love her more, my heart would burst, but it doesn’t hold a candle to how much He loves her. All in all, He has already accomplished great things in her and has more in store. We were able to share the love of Christ and her amazing story with staff in the hospital. And we were able to take home a healthier child than when we came in with. Her recovery is going well and she has been a great patient. I have really enjoyed the extra time I have gotten to actually enjoy her.
So……15 months and there’s still been so many questions. I think all of us were hoping that the heart condition was the reason for her small size, slow growth & delayed development. Chad & I have always had our suspicions that the heart condition was a symptom and not the cause. And our suspicions were found to be true when we were contacted last week to advise us that some of her additional genetic testing was completely and they finally had a diagnosis. I remember sitting there thinking “okay….here we go….we have a name, a reason, a direction, SOMETHING” The genetics lady proceeds to tell me that B has been diagnosed with an extremely rare genetic disorder called Wolf-Hirschhorn Syndrome (also known as 4P-). **Now before any of you go and “google” the syndrome, please allow me to say some things first. These things are extremely important to us.** Please know that Chad & I have done some research and we are fully aware there are some statistics, concerns, risks and scares about this syndrome. In saying that, we also intimately know, serve and trust God, Who is far bigger than any of them. And our faith is in Him. See, our precious child has overcome every odd that has been presented to her. Many of her doctors didn’t expect much from her in the beginning. Some of them never thought she’d make it. But see, our God is greater. She did make it, and not only did she make it, she’s been knocking it out! Why? Because no one, and I mean NO ONE writes the journey of our child, except for God..no doctor, no website, no research and no statistic. God is THE God of her journey. So when the genetics lady says “She’s been diagnosed with Wolf-Hirschhorn. I’m so sorry; I know it is probably not what you would have liked to have heard. And, I want you to know that you didn’t do anything wrong. This is just how she is. You didn’t do anything wrong during the pregnancy and you didn’t do anything wrong since she’s been born.” I suppose my flesh felt good when she said that. That deep mommy aspect needed to hear it wasn’t from drinking too much caffeine or forgetting my pre-natal vitamins a day or two or being sick or not finding out I was pregnant until 8 weeks in. But far more than that, I actually had one of those “out of the abundance of the heart, the mouth speaks” moments. Because, I instantly responded in love and peace (which I assure you was God in me, NOT just me) saying “You’re right, she is exactly who and what she is supposed to be. Because my God knit her together in my womb and NOTHING was hidden from Him----not even the arm of her 4th chromosome. And I can only believe that He knew this and has a special plan and purpose for her life.” To which I heard a “well, okay” from the other side of the line. Anyone who truly knows me knows I am as transparent as possible, so please understand; I am being very transparent in this. The hours after that call were definitely emotional. I mean, I’m only human. Having to explain the news to my amazingly strong husband (who God had already prepared to be the “strong one” that night) caused any underlying emotion to flood out of me. During those hours, I was again met with the realization that her life, our life, parenthood, none of it looked like what I expected. I didn’t remember dreaming of having a special needs child when I was a little girl. It was like someone had a dimmer switch on all those hopes and desires I had for my daughter..big dreams and little dreams. Not too long after finding out, I needed to go to the hospital to visit my brother that night and I cried the entire trip. I spoke out loud to God and told Him how I wanted her to be able to communicate, and crawl, and walk, and go to school, and participate, and make friends, and go to college, and fall in love, and be independent, and get married, and be a mommy……….and all of those visions were dimming. To be honest, a part of my heart dimmed in those moments, too. I was angry that I couldn’t just have a healthy child like “everyone else” (like EVERYONE in the world has healthy babies or something??). I was hurt that God hadn’t just done one of those lightning bolt healing jobs on her. I knew He was able. I had so much faith, but He hadn’t done what I wanted. And deeper still, I was afraid of losing more than just my dreams….as I pressed deeper into my emotions and pain, I realized the biggest fear still came back to my fear of losing my daughter whom I love so dearly. It was an awful and painful drive. But that still small voice and comfort wiggled His way through the chaos of my flesh and spoke to me. There have been few times I can say I truly felt like I heard the voice of God clearly. But this was one of them. As I went over all MY dreams and MY desires for Bebe and how they all felt dashed. I felt Him ask me what the heart of my pain was. And the only thing I could really figure out was that---I am a mommy. I want what is best for her. I want her to have the best life possible. I want her to be the best Bebe that she can possibly be. And that same voice simply said, “Then what’s changed?” Y’all, I have to say, it was one of those moments in life. One of those moments when it all made sense. NOTHING had changed. I still want the core of all of that for B. I still want the best for her. I still want her to have the best life possible. I still want her to be the best Bebe that she can possibly be. So in that regard, NOTHING has changed--except for me. God is continuing to teach me how to pull my own expectations off of B. And the beautiful thing is, these last few days, I have fallen more in love with her--the real her--the one that isn’t being measured up to what I expect of her. I am just allowing her to be her----and she is amazing. How could I have thought I would be disappointed? I will say, she will be expected to do her absolute best. That is not a negotiation in our home. She will be expected to not give up and to give her all. But what that looks like----well, is what it looks like. And I have been again overwhelmed by humility and honor that God looked out over time and space---and He saw Chad & I---and He said “THEY can do this.” It is an HONOR to be her mom. It’s an HONOR that God thinks we are strong enough for this. And there are moments and days that I fear He overestimated us. But, He always gives us enough strength, energy, drive, courage & perseverance to keep pushing ahead. She’s so worth it..at only 14lbs, in only 14 months, that child has touched more lives than I’ve been able to in almost 31 years. And that is worth the uphill walk. To share just ONE of the most recent “GOD MOMENTS”—the Wednesday before Thanksgiving (the day after my initial emotional rollercoaster day), I woke up with renewed hope. I called Bebe’s pediatrician’s office and leave a message with the nurse that I have grown to really appreciate. I was explaining the syndrome so B’s doctor could go ahead and be researching it. And I told the nurse to please tell the doctor that we are not in denial, we fully understand the statistics and the syndrome…and we are still okay. I told her about the story of the phone call with genetics (as I explained it above). And I told her what I said in response, about “You’re right, she is exactly who and what she is supposed to be. Because my God knit her together in my womb and NOTHING was hidden from Him----not even arm of her 4th chromosome. And I can only believe that He knew this and has a special plan and purpose for her life.” There was dead silence on the line. To which, I thought, “Oh Lord, I’ve offended her---have I talked about You to her before?” And a small “Thank you, Lori” came over the phone line back to me. I answered her statement with the same words in a question…”Thank You?” She said it, again. “Yes. Thank you, Lori. We recently lost our child to a chromosome defect. I’ve made peace with it before, but God knew I needed a little extra dose of peace today of all days. So, thank you.” I had to sit down immediately. I was crying, she was crying. In that moment, it clicked……THIS is “why”--for moments like these--for lives like these--for the opportunity to share God’s glory and peace. And if it brings honor and glory to God to walk through this journey----it’s worth it. Not only is it worth it, but I’ll do it every single day for the rest of my life if it’s for His glory. Our daughter’s life is bigger than just one person or just one life. She seems to touch every life she comes into contact with. So, who am I to question why God does what He does? Who am I to accept what man says over my child? Who am I to underestimate God’s plan and purpose? NOTHING was hidden from Him when the God of all creation personally and intimately knit Bebe together. NOTHING. And I am excited to watch my child continue to beat every odd given to her, to continue to reach innumerable people and to continue to fulfill the destiny that even I (yes, LORI, her own mother) underestimated.
Look out, world…our little B is truly our warrior princess!
The day after surgery
2 Days Post Op
Discharge Day
Recovering by playing outside
She's such a turkey!
Christmas season is upon us...and she is such a special gift under the tree. :)
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