Tuesday, December 18, 2012
Tuesday, March 13, 2012
The second is the blog post referred to in the first article and it is written from a father's perspective. Very interesting to hear things from a father's point of view. I can definitely testify that men handle this so internally and so differently. They don't make Mom friends at therapy to vent or sing praises to. They probably don't sit in their car and have a "cry it out" session either. Father's do the heavy lifting and never seem to get that weight taken away, even if just for a second. They are the one's who dry the tears as much as they can and keep you moving forward. I think you will all learn a lot from this father's perspective. I know I did!
Here's the link, but I have copied and pasted below:
6 Things You Don't Know About A Special Needs Parent
About 6 million kids in America receive special education, according to the U.S. Department of Education. One out of every 10 children under the age of 14 has some type of special need, which includes any physical, cognitive, or medical disability, or chronic or life-threatening illness.
My 3-year-old son Jacob is one of them. He has a disorder of the 18th Chromosome. The 18th Chromosome has various named disorders, including Ring 18 and the more well-known Trisomy 18 (which affects Rick Santorum's daughter, Bella). My son has the more rare 18q-. Only 1 in 40,000 Americans have Chromosome 18q-, which means that less than 7,800 Americans are affected by this disorder.
Because of this disorder, Jacob has had serious medical and developmental issues. He has had heart surgery, kidney tract surgery, bronchoscopies and endoscopies, slept with an oxygen tube, and has had dozens of medical tests and sees numerous specialists. We've been in and out of hospitals and doctors' offices since he was three months old. He also has severe developmental delays and receives speech therapy, occupational therapy, physical therapy and behavioral therapy.
Raising a child with any disorder, condition or special need, is both a blessing and a challenge. A challenge for the obvious reasons, and a blessing because you don't know the depths of victory and joy until you see your child overcoming some of those challenges (sometimes while smiling like a goofy bear).
Chances are that you know a special needs parent, or you may be one yourself. As a special needs parent, I often don't share my feelings on this aspect of my life, even with my closest friends, so I decided to compile a list here with the goal of building understanding (I was largely inspired by this beautiful post, authored by another parent to a child with a chromosomal disorder). I don't claim to speak for every special needs parent out there, but from the ones I know, some of these are pretty universal. If I've missed any, please leave a comment below.
1. I am tired. Parenting is already an exhausting endeavor. But parenting a special needs child takes things to another level of fatigue. Even if I've gotten a good night's sleep, or have had some time off, there is a level of emotional and physical tiredness that is always there, that simply comes from the weight of tending to those needs. Hospital and doctors' visits are not just a few times a year, they may be a few times a month. Therapies may be daily. Paperwork and bills stack up, spare time is spent researching new treatments, positioning him to sit a certain way, advocating for him in the medical and educational system. This is not to mention the emotional toll of raising a special needs child, since the peaks and valleys seem so much more extreme for us. I am always appreciative of any amount of grace or help from friends to make my life easier, no matter how small, from arranging plans around my schedule and location, to watching my son while I am eating.
2. I am jealous. It's a hard one for me to come out and say, but it's true. When I see a 1-year-old baby do what my son can't at 4 years-old (like walk), I feel a pang of jealousy. It hurts when I see my son struggling so hard to learn to do something that comes naturally to a typical kid, like chewing or pointing. It can be hard to hear about the accomplishments of my friend's kids. Sometimes, I just mourn inside for Jacob, "It's not fair." Weirdly enough, I can even feel jealous of other special needs kids who seem to have an easier time than Jacob, or who have certain disorders like Downs, or autism, which are more mainstream and understood by the public, and seem to offer more support and resources than Jacob's rare condition. It sounds petty, and it doesn't diminish all my joy and pride in my son's accomplishments. But often it's very hard for me to be around typical kids with him. Which leads me to the next point...
3. I feel alone. It's lonely parenting a special needs child. I can feel like an outsider around moms of typical kids. While I want to be happy for them, I feel terrible hearing them brag about how their 2-year-old has 100 words, or already knows their ABCs (or hey, even poops in the potty). Good for them, but it's so not what my world looks like (check out Shut Up About Your Perfect Kid). It's been a sanity saver to connect with other special needs moms, with whom it's not uncomfortable or shocking to swap stories about medications, feeding tubes, communication devices and therapies. Even within this community, though, there is such variation in how every child is affected. Only I understand Jacob's unique makeup and challenges. With this honor of caring for him comes the solitude of the role. I often feel really lonely in raising him.
4. I wish you would stop saying, "retarded," "short bus," "as long as it's healthy... " I know people usually don't mean to be rude by these comments, and I probably made them myself before Jacob. But now whenever I hear them, I feel a pang of hurt. Please stop saying these things. It's disrespectful and hurtful to those who love and raise the kids you're mocking (not to mention the kids themselves). As for the last comment, "as long as it's healthy," I hear a lot of pregnant women say this. Don't get me wrong, I understand and share their wishes for healthy babies in every birth, but it's become such a thoughtless mantra during pregnancy that it can feel like a wish against what my son is. "And what if it's not healthy?" I want to ask. (My response: you will be OK. You and your child will still have a great, great life.)
5. I am human. I have been challenged and pushed beyond my limits in raising my son. I've grown tremendously as a person, and developed a soft heart and empathy for others in a way I never would have without him. But I'm just like the next mom in some ways. Sometimes I get cranky, my son irritates me, and sometimes I just want to flee to the spa or go shopping (and, um, I often do). I still have dreams and aspirations of my own. I travel, dance, am working on a novel, love good food, talk about dating. I watch Mad Men, and like a good cashmere sweater. Sometimes it's nice to escape and talk about all these other things. And if it seems that the rest of my life is all I talk about sometimes, it's because it can be hard to talk about my son. Which leads me to the final point...
6. I want to talk about my son/It's hard to talk about about son. My son is the most awe-inspiring thing to happen to my life. Some days I want to shout from the top of the Empire State Building how funny and cute he is, or how he accomplished something in school (he was recently voted class president!). Sometimes, when I'm having a rough day, or have been made aware of yet another health or developmental issue, I might not say much. I don't often share with others, even close friends and family, the depths of what I go through when it comes to Jacob. But it doesn't mean that I don't want to learn how to share our life with others. One thing I always appreciate is whenever people ask me a more specific question about my son, like "How did Jacob like the zoo?" or "How's Jacob's sign language coming along?" rather than a more generalized "How's Jacob?" which can make me feel so overwhelmed that I usually just respond, "Good." Starting with the small things gives me a chance to start sharing. And if I'm not sharing, don't think that there isn't a lot going on underneath, or that I don't want to.
Raising a special needs child has changed my life. I was raised in a family that valued performance and perfection above all else, and unconsciously I'd come to judge myself and others through this lens. Nothing breaks this lens more than having a sweet, innocent child who is born with impairments that make ordinary living and ordinary "performance" difficult or even impossible.
It has helped me understand that true love is meeting someone (child or adult, special needs or not) exactly where he or she is -- no matter how they stack up against what "should be." Raising a special needs child shatters all the "should bes" that we idolize and build our lives around, and puts something else at the core: love and understanding. So maybe that leads me to the last thing you don't know about a special needs parent... I may have it tough, but in many ways I feel really blessed. Follow Maria Lin on Twitter: www.twitter.com/marialinnyc
This is the blog post Maria mentions in her article:
Five Things You Should Know About a Special Needs Family
Our journey as a special needs family has had amazing highs and astonishing lows. Through it all, I've experienced the joys of a family growing stronger together in the face of a true unknown with Katy's chromosome deletion. Even with all of that strength, we are still faced daily with obstacles and emotions that we don't show many - if any - people at all. In the interest of helping others understand what goes on in our lives every day, here are five things you should know about a - or rather about our - special needs family, at least through my eyes.
1. We’re ostracized.Whether you realize it or not, we’re outsiders. We have an all-consuming fear that something will happen to our child because she can’t protect herself the way a “normal” child can. We worry that she can’t say “Stop” or “Don’t” - or that she won’t realize she should have said it until it’s too late. We worry that people simply won’t understand our child. We have seen the sideways glances and rolled eyes from strangers when our child does something they consider rude or disrespectful. We’ve been verbally accosted by strangers who feel we shouldn’t have used a handicap parking spot for our “normal” looking child before I can even pull the wheelchair out of the back. We’ve listened to parents at our children’s school complain about how our child is somehow holding their little boy back. We’ve dealt with the inconsiderate use of the word “retarded” from our children’s own friends to even one of our child’s doctors. And no matter how many well-meaning people try to help, we will still feel alone.We end up by ourselves at parties, whether we have our little girl or not. If she’s with us, than we’re constantly watching her to make sure she’s okay. We don’t make our rounds and say “hi” to everyone. We simply can’t for the reasons I’ve mentioned above. If she’s not with us, then we’re worried that something will happen to her away from us. We don’t go out with our friends the way we used to because it’s too frightening to leave her with someone whom might not understand what she’s trying to say or to sign. Sometimes its even too hard to get your own family to understand just how stressed out you are.
2. We’re jealous.Even with a family like ours where four wonderful kids help out every day, we can’t help but feel a tiny pang of jealousy every time a child younger than our little one simply walks up to us. Or talks to us. Or runs past us on the way to ask someone for money.Know what’s even worse? It makes us feel guilty as hell, because we’re so proud of everything our child has accomplished. This little girl has worked harder than any of our other children to accomplish everything she has been able to do - and we wish it wasn’t so hard. We hate that that little pang of jealousy hits us because this “normal” child in front of me didn’t ask for my little girl to have a chromosome deletion. This child doesn’t realize that when he talks to me, for a split second, I think “Why? Why did this happen to my child and not to you?” And then I have to put that thought as far away as possible because it’s not fair to that child or to my little girl.If/When Katy reads this sometime in the future, I want her to know that we have never regretted a second with her. You made us become better parents and better people. You amaze us every day with every single accomplishment you have piled on top of accomplishment.
3. We’re scared.We try to do everything we can to set our child up for success and we always worry that we’re not doing enough. Or we’re doing too much. Or we’re doing the wrong thing. Or we haven’t done enough research. Or we won’t be able to afford that. Or how will we be able to afford that? On a daily basis, we wonder whether the decisions we’re making today will improve or degrade her quality of life. And we do it knowing full well we’ll never know the answers to those questions until they arrive - for better or worse.We constantly worry about money because everything involved with caring for a special needs child costs way, way more than it should.We worry what will happen to our little girl when we’re gone. So we hire lawyers to draw up special needs trusts so that our child will be financially protected when we’re gone and won’t find herself fighting the same fights we handle now for assistance and benefits. Did I mention that we worry about money?
4. We’re good at hiding things / We’re not good at hiding things.I am a deeply private person and became even more so after my daughter’s issues arose. I’ve rarely expressed my deepest feelings too anyone save my wife. And sometimes I haven’t been able to even do that. I internalize the problems we deal with and swallow them whole, because that’s what a strong father, husband - a strong man - does. What was it that the old deodorant commercial said: “Don’t ever let them see you sweat.” I have never wanted anyone to know just how terrified I have been. I’m not sure I want them to know now.
In this day and age, Facebook has become an unbelievable lifeline and community for my wife. She found an entire village of chromosome 6 and other special needs mothers that understood her pain and frustration. That community understood what was going on when she posted what was on her mind. To others, she just seemed rude. For a private guy like me, it took a lot to start Katy’s blog and start to bring some of the emotion of our lives to the public. It has taken even more for me to start to try to become more active within the same online community that my wife finds such comfort in. This post is, by far, the most I’ve ever revealed about our circumstances. I’m still trying to decide if I’ll even hit the post button.
5. We’re stronger than you realize. / We’re more fragile than you realize. We’ve had to deal with watching our child get stuck 26 times over two hours as doctors attempted to get an IV in her. We’ve given our little girl over to doctors seven times to perform some sort of surgical or medical procedure that involved general anesthesia - more than all our other children combined. We’ve waited in private agony for her to be returned to us each time, hoping for the best, but scared to death that something will go horribly wrong. We’ve had to develop incredibly tough skins dealing with red-tape corporations determined not to spend a dime more than they have to on my daughter, even if they’re legally obligated to do so. We’ve fought for what we thought was right and just even when it put us at odds with family and friends.And we’ve broken down in each others’ arms. We’ve been hurt by seemingly innocuous remarks that wouldn’t have fazed us a day - even 10 minutes before - but for some reason cut through at that very moment. We’ve hurt each other when our actions haven’t lived up to our expectations.We’re human.So, for our friends and family, for future friends we haven’t had the pleasure of meeting yet, for strangers to us who are friends and family to a special needs family somewhere else in this vast (but ever smaller) world of ours: What can you do?Strive to include. Work to understand. Go out of your way on occasion to help a special needs family out. Realize that the stress and the strain take their toll. We’re just trying our best to survive. If we’ve offended you with our words or are actions in one of these times, we apologize for our moments of weakness. Hopefully, someday, we can move forward together.We do our best to make our family life look normal and to act like everything’s fine. And we wish people might see through that facade every once in a while and understand that we appreciate the slightest effort to make us feel… special.
Wednesday, July 13, 2011
This summer Preston is attending the "Extended School Year" (ESY) program for two, 3 week sessions. It is supposed to help him retain his "skills" and continues his speech and OT from the school district through the summer. This week is his break week and next week will start his 2nd, 3 week session. He loves it of course and his summer teacher is extremely nice. He is even having some animal therapy this summer with therapy dogs. His teacher wrote me a note that said the greatest thing at the end of his first week. She said Preston is such a happy soul! She summed him up so well. Preston is such a happy little guy with the greatest smile. It warms my heart that others see that too!
Friday is our feeding therapy day at the Callier Center and Randy and I or Ashley and I go with Preston. The first day I was holding back tears the entire time we were there and I couldn't sleep any the night before. I think I was just putting too much pressure on this 10 week session being our last hope. While we were there that first day I was quickly realizing that this 10 week feeding boot camp wasn't going to be the magic pill that was going to cure Preston's feeding disorder. I was also feeling frustrated that Preston's delays where interfering with his therapy. The reality is that they do and they add one more complicated layer to it all that we just have to adjust for and work through. After getting home that day and working through it all I feel like the Lord just gave me a remarkable peace about it.
Honestly, I know I never even stopped in my anxious state to lay it at His feet. If anything I think I was praying, asking God to please let this be the answer. He knew what I needed and he took away my anxiety about it. I let go of all the expectations I had created and just had a peace that we are all just going to be on this path for a while longer. Preston won't be eating normally once these 10 weeks are over and he may not even by the end of this year, but I do have a comfort that this will be the answer. That we are in the right place now, and it will just be in His time, not mine. The main therapist at the Callier Center, Jenny McGlothlin is amazing and a huge part of this summer program is focused on parent education. I found Jenny and the Callier Center through a friend of a friend on facebook actually. This Mom's son has struggled with a feeding disorder and they would fly in from out of state to see Jenny. I am so thankful to have been led to the Callier Center. Jenny has a different approach to feeding and I know in my heart, that together, we will get him eating somewhat normally one day.
Letting go of expectations, altering our hopes and dreams is something that never seems to hurt any less as time goes on, but I will say the hurt does seem to fade more quickly now. I had a conference at the end of the year with Preston's teacher, school OT and school speech therapist. Randy wasn't able to attend so I went by myself and we spent quite a long time talking about Preston. These conferences always make me cry and at one point Preston's OT, who is a very caring lady and you can tell she really cares so much about Preston, said to me "what's your biggest fear?" I knew right when those words came out of her mouth that what I was feeling really had very little to do with Preston himself and was really all about morning mine and Randy's letting go of some of those normal parent dreams you would have for your child. Preston is happy and he is loved, as she pointed out, and I know that. I do of course have fears, actually more like terrors, of kids teasing him or ever making Preston feel different (and I have had multiple experiences with grown adults to children having straight up asked me to my face and his - "what's wrong with him" along with more obnoxiously rude questions and comments so I know it may happen again). But I know that day I was sitting there in that conference room bawling because we were even having to have a conference about my 3 year old - discussing Preston's improvements, his struggles and his path forward. I realized later that day that I just have to push those feelings away when they creep up. God gave Preston to Randy and I because we were the two people who were meant to be his parents and God created Preston perfectly. He will guide us along this journey if we let Him. Letting Him is where I struggle the most and I am really, really trying to work on that. Preston has made some amazing progress. It is at his own pace and seems to wax and wane, but we are really so thankful he is moving forward!! We were at a family reunion this past weekend in Lubbock with my parents and we were all piled into one room. My Dad wakes up way too early and he was banging around in the room and woke up Preston waaayy too early Saturday morning. Preston jumped on mine and Randy's bed and said "Mamma, Mamma!! Daddy, Daddy!!!" It just about melted all of our hearts. He is still so sporadic with his words and when they come out so effortlessly like that it just brings tears to your eyes. Those are the moments that I will never forget!
So we have had feeding therapy this summer, swimming lessons, story time and drum roll please......this June brought about the successful potty training of Luke Jackson Hall. This has been a long time coming and Randy was seriously at his wits end and about to throw in the towel one day and something just snapped in my head. I took Luke into the bathroom and we had a very frank little talk about "gross things" and how big kids, Mommies and Daddies and all big people don't do gross things and bam he has been wearing big boy undies ever since with not one accident, not one! After two weeks of pull ups at night he's even wearing big boy undies to bed. I am kind of thinking we experienced divine intervention, but what ever it was after five days of the big boy undies we were at Walmart buying a bike for the kid. (That was the bribe first purposed in March and we had even made a visit to sit on the bike, touch the bike, ride the bike in the store to increase the motivation which had seemed to fail miserably.)
We figured a bike was cheaper than continued pull ups so the bonus of the pull up free nights has made this deal even sweeter. We have also been able stop the onslought of sugar highs from the one piece of candy for being dry, one for a teetee and another for a poop. Now we just say your a big boy with a bike. You don't need candy for going potty. This whole potty training thing has been quite an adventure that am not looking forward to repeating, but I know once the time is right for Preston it will be worth it! (Oh we got Preston a bike too because we didn't want him to be left out and he has been working hard with his feeding boot camp!) Man do these boys love their bikes. They like to sit on them for just a min every time we go out into the garage to get in the car and they try to do the same on the way in. I can see a lot of bike riding in out future this fall.
We have been trying our best to stay cool in the heat but still find some time to be outside. We are working on our skills we learned at swimming lessons and the boys even saw their first movie in the theater, Cars 2 with their cousin Caleb on opening weekend. I hope to get to the blog for another post with out such a long dealy, but if I don't just know we are all doing well, working hard and having a lot of fun along the way!!
I posted A LOT of pictures this time! Enjoy!
We had a our pictures taken at the Arboretum on Memorial Day weekend when Caroline was in town. The photoshoot was a little rocky because two little monkeys were in wild moods, but we still got a few good ones.
Nannie watched the boys after we got them to bed and Randy and I got a night out. We celebrated Natalie's big 22nd birthday at the Glass Cactus. Ashley and Natalie have been friends since 2nd grade and she just moved back to Texas this summer. I used to take Ashley and Natalie to the mall when they were little!! We had a great night!!!
Nix family reunion!! We just made up a part of the family there. This the family of my great grandfather, Jim Nix. There were family there of his 8 siblings as well.
The reunion was at the Lubbock Windmill Museum. That windmill in the background is a Parish Windmill, which I learned that day were made in Earth, Texas (my Mom's hometown) and my grandfather, Ross Jackson Brock used to sell them.
Wednesday, April 20, 2011
His surgery went well and they removed Preston's tonsils, adenoids and put tubes in his ears. Dr. Hung did another laryngo/bronchoscope which showed that his laryngomalacia is still present (the cartilage has still not fully hardened and is flopping over into his airway even when he is not having symptoms or stridor). He showed us pictures of the "floppy" area of his larynx and explained that the area that is flopping over into his airway needs to be surgical cut away basically. He did not feel like it would be best to do that during this surgery because Preston had too much going on with his tonsil being removed. He suggested doing this surgery sometime this summer before the next cold and flu season. Definitely not what we wanted to hear and honestly Randy and I have not even gotten that far to even really discuss this. My feeling is that I want to do some more research about it, (cutting on his larynx) consult another doctor and possibly wait and see if the fall brings about another laryngomalacia episode before scheduling a surgery. The normal thing is that this cartilage should stiffens up on it's own as a child ages, but most doctors say that happens by the age of 2 1/2, so I guess he feels like it will not harden up on it's own any further. Further research will be required and I really would like to keep Preston out of the hospital for a while so we will probably look back into this issue in the late summer, unless of course he has a breathing episode between now and then.
Presty with his new buddy Scamp the scruffy puppy!
Preston did stay the first night in the PICU and that went smoothly. This is the first surgery that Preston did not have any respiratory distress issues afterwards and we were so very thankful for that. He had some periods of dips in his oxygen saturation levels into the upper 80s, so he was on oxygen throughout that first day and then the first night, but they said that was mostly due to the strong pain meds he was on (fentinel and morphine). Preston first started to eat some yogurt the next evening after we got moved to the regular pedi floor and then later he started drinking some milk so we were able to leave the hospital after night 2. My Mom kept Luke while we were there, and I am so grateful!! Luke actually threw up during lunch at his school on the day of Preston's surgery so my Mom got to quickly run in and see Preston in the PICU after he was out of surgery and then she had to run home and pick up Luke from school. He was fine and most likely just had one of his gagging issues while he was eating. Nannie got him to eat like a champ the rest of the day so he made it to school the next day. My Mom can always get Luke to eat! They had fun and planted some flowers and went to breakfast together. I am so glad he does well being away from us. This is actually the first time I noticed a little acting out once we got home though. He was seriously needing attention from us that Friday evening and Saturday once we got home. I know he doesn't understand where we were gone to with Preston. He just knew Preston was sick once he got home and that we had been at the doctor (for 3 days). I try to remind myself what it must be like from his 3 year old perspective. I am so thankful that Luke feels so comfortable with my Mom and that she is there for him when we need to be away with Preston. I really don't have to worry about him and that is so comforting to Randy and I.
"I guess I'll drink this if you let me out of here!"
It was a different experience being at Medical City and not living so close by like we used to. Previous Medical City experiences we would just run home to shower and my parents would stay at our house so they were close by. So this time we were a little more isolated, but my sweet friend Paige came by Wednesday night and I got a chance to have a quick chat with her and she brought us an awesome home cooked dinner - yummy pork tenderloin, mushroom risotto, peas with prosciutto, chocolate chip cookies and the best prickly pear italian soda. It was soo great and totally hit the spot! Sadly, I do get a lot of comfort from good food (so does Randy) so that dinner really helped my stress level - no lie.
We had pricelined a hotel room for Wed night because we knew we were going to be in the PICU and they have a one parent staying the night rule. So Randy left the hospital around 10pm to go sleep at the hotel and came back at 6am so he could get in before lock down (PICU goes on lock down between the hours of 6:45 - 8:00 both am and pm during nurse shift change - typical of most ICUs, PICUs and NICUs - Medical City does the if you're in, you're in and if you're out, you're out rule). Well, when Randy got in the car to head back to the hospital that morning some lovely hooligan stole our freaking side view mirrors off our car in the hotel parking lot. SERIOUSLY! That is the 3rd incidence of vandalism that Escalade has had and the one before was totaled when crazy vandals poured house paint all on the inside of our first one. I am scared our insurance is going drop us! So when Randy came to relieve me, I headed back to the hotel to have a lovely conversation with the hotel manager before I got my turn to sleep until checkout. Needless to say I took up my friend Paige on her offer to stay at her house the next night, so Randy covered that night's shift and I had a wonderful night sleep at the Brauer B&B. I even got a blueberry waffle for breakfast!!!
The hotel manager was actually very nice (at first) and said he would put a rush on getting in touch with their insurance company and getting back to me. They had a security guard out in the lot and cameras. The manager said you can not see anything on the video because the front of our car is not in view. Now, he isn't being quite as nice anymore. He won't return mine or Randy's calls and I have not received a call from their insurance person. We will see how that all turns out. It is really sad that criminals out their steal from people and they have no clue the circumstances that person is in. The mirrors have turn signals in them, so they will be way above our $500 deductable. This incidence makes me more mad probably even then when our car was totaled. You don't really think your car will be vandalized at a hotel that has a security guard and you don't really think about your car much when your child is in the ICU. I think I was angry that I was even having to worry about something so stupid during that time. I hope the hotel at least covers our deductible, but at this point it's not looking so good. Anyways, just when we were missing living so close to Medical City we got a nice reminder of one of the reasons we moved.
Currently, Preston is still only drinking milk and eating about 1 to 2 yogurts a day. He has definitely lost some weight, but I am putting heavy cream in his milk/carnation instant breakfast and putting about a 1T of flaxseed oil in his yogurt. Hopefully he will get past this fever stuff and I may start next week to pushing his eating a little more. He was having a lot of pain upon waking and he was waking in the night until last Friday. I have read that it's painful when you wake up because your throat dries out so much when you're sleeping. I am glad he is past that! We had flashbacks of the first few months we were home with the boys when they were babies and waking up in the 4 o'clock hour is just wrong!! I think that might have given me a few more months of stalling Randy about wanting to have another baby. ;-) Preston is already sleeping so much better and not having any apnea issues what so ever. Even when he was waking up in the night, by morning when he woke up for good he was so much more refreshed than before. I am so happy he is getting some good quality sleep now!!
Preston did have two small bleeding issues, the last being Friday night in College Station (we went with my Mom for Parent's Weekend), but thankfully his bleeding stopped quickly both times and I hope we are about out of the woods for that scariness. I just need to get him feeling better and getting him eating some pureed food again. That will be our next hurdle!
I don't think I could say this enough, but I am so thankful, touched and amazed at all the people who pray for Preston and our family. This was Preston's fourth surgery and I'm not even sure how many times he's been in the hospital and we are by no means naive enough anymore to think it will be his last. It is so hard to sit in that waiting room, just waiting and waiting to get to go back and see your baby again. This time it took them forever after Preston's doctor came back to tell us he was done to when we were able to get to go back and be with him - 30 min. My mind started playing mean tricks and worrying that he was having trouble breathing and getting off the ventilator, but I just tried to bring my self back to praying and remembering that many of you were praying, too. The power of prayer is amazing, truly amazing and for all the time you spend in prayer for my family I thank you!!! Until next time...
Thursday, March 31, 2011
Preston had another stridor/laryngotracheomalacia (floppy/collapsing airway) episode one night in February that we had to make an ER visit for. The steroids and bronchodilators worked quickly again so we were very thankful! He has been having increasing issues with snoring, extremely restless sleeping and waking in the night on and off since then. We saw Preston's pulmonary and ENT doctors last week and they felt like he is having sleep apnea and said that his tonsils are quite enlarged and that may be contributing to his stridor/airway collapsing issues. We originally had scheduled this for the end of April, but he has been sleeping so terribly the last few days that I called them on Tuesday and they felt it would be best to move it up to next week. Preston's surgery will be at Medical City Children's and with tonsils it requires a minimum 1 night hospital stay to observe. Going home depends on how quickly Preston will drink enough liquids to stay hydrated. Since Preston has experienced some variation or another of respiratory distress after each time he has been intubated they have ordered a PICU room for him to go directly to after surgery. We will definitely be having a 24 hours stay in the ICU. I actually feel a little better about that this time because the 2 instances we have been alone with him recently when he started having these stridor issues out of the blue were a little scary and I know the PICU nurses are much more equipped to handle emergency situations. That's the scoop on that.
Of course everyone has concerns with his oral aversion issues and how he will respond to drinking and eating while having some pain in his throat. I am maybe being too optimistic, but I really feel like he will want to drink when he is able to. We will see though I guess. Eating, well that's a whole different story, but frankly he has really been fighting us a lot this past month with eating anyways. I think he has been tired, congested and really anything that throws him off of normal makes eating quite a challenge. We will just take his eating one step at a time after his surgery.
Luke had tubes put in yesterday morning and by the afternoon he was 100% back to his feisty self. He is the one who has always had the ear infection issues and I dropped the ball last spring and should have taken him to the ENT then, but it was during Preston's inpatient feeding stuff and it sorta of got put on the back burner. Luke was quite funny when he got his goofy juice yesterday morning before they took him back. He was talking and laughing some and playing with a little stuffed animal they give him. He had a little trouble with vomiting (no shocker) when he woke up so our stay after was longer than the pre-op and his surgery put together, but once he got some zofran he was good to go. Poor kid has a sensitive tummy like me! He really was a champ though and after we finally were able to get his stomach settled to leave he even felt like eating a little breakfast out. So we made a trip to Breadwinners after leaving the hospital ;-)
Preston has his semi-annual developmental pedi appointment this Friday. This is always a tough one that you kind of have to just let it all roll off you once you walk out of there. We do like Preston's Developmental Pediatrician - she is a nice, caring person, but it is not an easy thing to see on paper, there in black and white, Preston's delays and low scores. It is also always a tough decision as to whether or not we want to go there with the question of what does this say about Preston's future. We now know this is just her educated guess based on her experiences, and if you asked all Preston's doctors they will definitely all give you a different answer. So that's usually mine and Randy's big debate before we go into this appointment.
Randy and I were talking earlier this week and we both said it's not like we wake up every morning feeling like we have a "different" kind of family or that Preston is really that different from any other child. This is our normal and it's really all we know. These type of appointments are hard because it really is all focused on how things are different with Preston and again what that may mean down the road. It's definitely difficult to not to let these things weigh on you and bring you down. I am looking forward to getting Friday's appointment over with and filing away the papers and getting on to our weekend. :-)
Thank you all again for keeping Preston in your prayers! Preston and Luke are both such sweet boys! It has been so fun since the weather has been nice to get out with the boys and do some fun things. We went to the zoo over spring break and they boys had so much fun watching the otters play and swim - actually we all did. Aunt Ashey wants an otter aquarium in her house when she grows up! ;-) Randy has taken the boys on some great adventures exploring the parks and trails around Southlake and Grapevine. He is wanting to take the boys to Tyler this Saturday if the weather cooperates to do some more exploring around there.
I will keep you all posted the best I can. I know some of ya'll are anti-facebookers, but it really is the easiest way to stay connected to family and friends so think again about it. I have had countless great things happen through FB and I totally believe the good it brings out weighs any of the negatives. I am going to leave you with a few pictures I have been meaning to put up since the boy's Birthday Day and Birthday Party! Have a great weekend and get out there and enjoy the sunshine!
Friday, February 11, 2011
So what have we been up to?? As Randy likes to say, "our lives of sleeping in have changed forever" because Preston started school after Christmas break. We still hit snooze repeatedly until it is 7 and then make a mad dash to get out the door so we don't have to take Preston in and sign him in as tardy. We have had to do it a few times, but I think we made it the first two weeks without having to - impressive if you ask me.
Are we seriously waking up this early?? Preston's first day of school.
I was really impressed she still came in for the meeting and it felt very good that she opened up to us about her son. It was so comforting that she knew first hand how hard it was to be on the parent's side of all this ARD meeting and IEP stuff. So many things had to come together for us to be able to move at the end of this past summer. After that ARD meeting I really felt a peace that we were exactly where God wanted us to be for Preston. I know Randy did too. We were really blown away by the school, the administration, the therapists and the teachers.
As for Preston's progress, we feel that school has already started to make a difference in his confidence with speaking. Preston has many, many words - most of which he repeats after you say them or says them when you point to a picture. They just don't come out all the time spontaneously and he still struggles to find them when he is frustrated or wants something. We feel like that is very slowly starting to change though. Preston will now pretty reliable say drink when he sees a drink he wants and he will say hi and bye sometimes without being prompted. He can also say a lot more things, it's just really hard to get it out unless HE wants to say it. This weekend Stephanie and MiC were in town and when we were leaving to go somewhere and Baby Caroline wasn't going with us, Preston said "bye, bye Baby Caroline." We were sooo proud of him. He can look at a picture and say Baby Caroline if feels like it or gets excited, but saying it in the moment when we were leaving her was a great thing to hear.
At school they are also working a lot on his following directions and social appropriateness, such as staying seated when it is time to sit and participating in group activities. We have seen improvement in this since school started and that has been so exciting as well. His OT, Ashley, at Our Children's House noticed this as well and she was so ecstatic about it. She is no longer having to sit him in a therapy type chair (one with a tray to keep him somewhat confined). She is just sitting at a table with him and he is listening to her when she tells him to stay seated! Ashley is just so cute and she gets more excited than I do sometimes when he does new things. She is such an awesome therapist and person!!
As for Preston's progress with eating that is about the same. We have had to cut back on our OCH therapy visits so that our insurance covered visits will last the entire year. We are actually really up in the air as to what to do now. There are out-of-state options we may consider, but at this point we just really need a break from the outrageous medical bills so we are going to have to put an out-of-state option on the back burner for this year. There is a place called the Callier Center here in Dallas, and two different people have told me great things about it.
The fact still remains that our options are limited due to our restrictions on our insurance, but I think we may try to switch to the Callier Center and see if their approach to helping Preston chew is any different. I am also going to start researching non-profit or any type of organization that can help offset the out of pocket therapy costs since we are not even close to qualifying for state SSI or medicaid assistance for Preston. If anyone one knows of any organization that helps with things like the cost of therapy please let me know.
For now we are still pureeing and praying - haha, funny aren't I? Randy and I are really just trying to be realistic with our expectations for Preston and it really appears that until we can get some more intensive therapy, Preston is not going to be eating normally anytime soon. We are hoping that with age his therapy might be a little bit easier and more effective, but we also know that age can add to the problem as his aversion to chewing could be becoming more, and more set in stone so to speak. We shall see, but I was thinking back and it has been months since he has attempted to put anything solid in his mouth like a chip or fry. I am really praying that we can get into the Callier Center in a reasonable amount of time and that they have some different options for him.
Luke has been doing really well. He is talking up a storm and we are busy just trying to keep up with him. He loves going to school 2 days a week and we just moved him this week to a school that is closer to house so that the picking up and dropping off at two different schools wouldn't be so hectic. Randy and I were both really nervous about switching his school, but he handled the move really well and seems to already like his new classmates and teachers. Luke actually had a harder time starting back to school without Preston than he did switching schools, but once he got the hang of going to school by himself he was fine. I also saw an old friend from A&M that was in PPA (professional program of accounting) with me. Her daughter is in Luke's class. It really is such a small world. We have had fun catching up with each other and it made our switching schools even easier. Luke had his Valentine's Day Party yesterday and it was so cute to see him with his classmates!! He kept saying it was his birthday party all day after school.
We are starting to see that Luke is beginning to notice that Preston's communication skills are different from his own, so I am just praying that I handle all that the best way possible. A few weeks ago when we were headed to school Luke started saying "Preston don't talk, Preston don't talk." Preston is extremely quiet in the car sometimes, sometimes not even making a peep, which still even gets to me when I drive alone with him, so I just tried to tell Luke that Preston wants to be quiet and that Preston doesn't feel like "talking" sometimes. That seemed to satisfy him, but he has said similar things a few more times, so I really hope whatever comes to me in the moment will be the right thing to say. Randy and I know we most likely will face some tough questions from Luke or maybe even Preston as time goes on. I suppose you just do the best you can and try to help them see that differences are what make us all unique. I'll just keep praying about that one.
We had a great Christmas despite a few rocky patches with Preston. We ended up in the ER in College Station with Preston the weekend before Christmas. He woke up late in the night on Friday night having some breathing problems due to his larygomalasia/floppy airway thing. I started to freak a little when it hit me we were in a small town, with a small hospital, not a big children's hospital, but honestly they took Preston right back and had an albueterol treatment, steroids and a great pediatrician there in no time. It was a momentary flashback of being in the hospital right before the babies first Christmas and getting stuck in a hospital in College Station was not my idea of a good Christmas, but it all resolved itself pretty quickly and so they let us go home after a few hours. Since Randy and I were running on little sleep and frazzled nerves it made for a fun filled trip home the next day, filled with lots of happy campers. Thank goodeness we were with Ash to watch Luke while we were at the hospital and to defuse the situation the next day. Poor Ash she has seen the good, the bad and the ugly of a marriage and family life. She's a trooper and always there for us and we love her so!!
Preston loves his bibles songs like "Deep & Wide" and "Jesus Loves Me." He won't be singing any of these anymore at school :-( so I got them a set of Bible Song CDs for the car. I'm not sure who loves the songs more, me or them. They just bring back so many childhood memories! Preston's new favorite is "Peace Like A River." It is so precious to hear him sing it. MiC and I had a fun time oo when they were in town playing all the ones he remembered. :-)
Preston seemed to get better until Christmas Eve evening and then it started up again, but this time sounded lower in his chest and wasn't so wheezy. I took him to a Care Now because it was later in the evening. This time it was in his lungs and his x-ray showed he had the beginnings of pneumonia. They loaded him up with antibiotics and steroids, wanted me to continue his breathing treatments and told me if he got even the slightest bit worse to book it to the ER. My Mom and I were getting nervous in the afternoon on Christmas Day because he was extremely lethargic, but the meds kicked in a little bit after that and he started to perk up. We were able to make it to my Dad's cousins house Christmas Eve night for a quick little visit with my cousins. That was so nice. I love getting to see them!!
We had low key Christmas Day at our house with Nannie, Grandpa, Ashley and Josh since Preston wasn't feeling his best. We really missed Steph, MiC and Baby Caroline. They were at there house in New Mexico with MiC's side of the family. We traded pics with Steph that day over the phone and they told us Santa brought Little Missy a lot of goodies for her first Christmas. Luke really understood Santa this year and it was really cute bringing him down the stairs to see what Santa had left. Little ones really add something very special to Christmas and we really enjoyed our holiday season this year!
My Mom wanted to surprise Randy and get him an iPad he was always talking about instead of money. She knows he always spends his money they give him on medical bills. Randy was so shocked he had tears in his eyes. The look on his face was awesome and nearly made us all cry!! Now he won't put the thing down. ;-)
Josh with his A&M helmet for his desk that Randy was so excited to get him.
Luke loves the Cars movie and he loves the characters in it.
The boys looking at their sand and water table from Nannie and Grandpa.
Friday, December 31, 2010
I wanted to put a few of our favorite pictures up from this last year. We had a great Christmas with our family and we are looking forward to a wonderful New Year! Thank you again for all of you who kept us in your prayers this past year. We are praying for a hospital free 2011 and for many new wonderful memories and special moments. I have updates to come about Preston's ARD meeting and our Christmas. Preston's first day of school is Monday the 3rd and we are anxious, but also excited for this new chapter to begin for him. Thank you all and Happy New Year!!!