Wednesday, August 26, 2015
Saturday, February 15, 2014
As the mother of any special needs child will tell you there comes a time in our lives when we are faced with a very real set of limitations. And let me tell you acknowledging that such limitations even exist is a difficult thing to deal with, at least for me.
For starters, I cannot be in denial. Whether or not Taylor life is adjusted to her specific limitations doesn't increase her chance at a normal life. So then does this mean that I should keep Taylor from doing things other normal children do? No, of course, not.
I continually try to accept Taylor and her syndrome and the limitations it brings. Say we're at a birthday party, right off the bat Taylor cannot consume the food most children eat or drink. Does it bother me? Yes, it does. But then I think to myself if I bring the snacks she can eat, does it make any difference? No, of course, not.
Now, what about when there are accidents or emergencies? As the words imply accidents and emergencies are just that unforeseen and unpredictable that we must deal with the best way we know how.
Let me use Taylor's seizure as an example. Last week Taylor had a seizure. She fell straight back and her head hit the concrete. The noise was the worse type of noise I ever heard before. My daughter's head had just hit solid concrete! And then it happened Taylor went limp, her eyes were disengaged, her arms just dropped to her side and she couldn't hold her head up. As I held Taylor close to me tears streamed down my cheeks and all I could do was tell her that everything would be okay. In the face of chaos I remained calm because mentally I was prepared for this, for all the limitation and the unknown.
That day as Max and I soothed Taylor and maintained our composure the easier it was for the three of us to deal with the issue at hand, good thing too because that night Taylor had another five seizures. I'm happy to report that Taylor's CATscan came back fine and the hospital ER immediately took her back for testing as soon as we arrived.
I think it's critical to be mentally and emotionally prepared because when we are we're stronger and more rational and able to accept what's going on. It does not mean that I'm not scared or sad, it just means that I'm in control of my actions and emotions, which really is the only thing I can control.
Accidents and emergencies will happen, and as the mother, father, friend, or caregiver of a special needs child or not decide to be ready and prepare for whatever may happen.
Thank you Maria Piork for helping edit. Please be sure to follow her at marialovestowrite.blogspot.com.
Friday, October 4, 2013
Taylor's first swallow study was an eye opening experience one that will stay with me for many years to come if not forever.
I recall the shock on doctors and nurses' faces when they saw how Taylor swallowed. They would gasp in horror as fluid went into her tiny lungs and gasp at the sight of how uncontrolled Taylor's tongue was when she fed from her bottle. Their reactions terrified me. I mean, I had no idea what was going on or even understood what a swallow study was in the first place.
In my frantic and vulnerable state of mind I was on the phone with my mother-in-law right away. I distinctly remember talking to her and hearing her say over and over "I knew it. I knew something was wrong. I told Max there was something wrong with our baby." And she was right. She told us something was wrong with Taylor, but I disregarded her observation. I guess sometimes no matter how obvious a situation is we mentally don't want to accept it.
Now, of course we noticed little ‘things' and we were diligent in consulting with the doctors and such, but never did the thought of my daughter being handicapped cross my mind. As a first time mother I wanted so much for Taylor and so when I noticed that Taylor was not doing what the other kids her age were doing it frightened me to the core and not because of a certain title that would be forever etched, but because there would be a whole other world to cope with.
In the early days of Taylor's diagnosis so many times I would cry and cry to friends and family. Back then I desperately needed people for support, people to talk to, people to help me understand why this was happening to us. It's now been almost two years since that first test and I don't cry as much anymore. Looking back, I realize that was my way of dealing with things at the time, today, I am stronger for it.
If I learned one thing from all this is that no matter what happens, no matter what we go through, in the end the sacrifices that we make as a family is all that really matters; the sacrifices my family and his family have made for Taylor. I am, also, forever grateful to the many friendships cultivated over the years and I appreciate you all very much. Now, even though there have been many sleepless nights and will remain well into the future I would not trade my baby girl for the world. Love you TBug!
Thank you Maria Piork for helping edit. Please be sure to follow her at marialovestowrite.blogspot.com
Thursday, September 12, 2013
Saturday, May 11, 2013
Thursday, January 10, 2013
As you know, my daughter, Taylor, has been diagnosed with 2Q37 Deletion Syndrome. As part of that Taylor must be checked every four months for Wilm's Tumor, which is a cancer in the kidneys. As she gets an ultra sound done on her kidneys I pray that the results come back negative and so far we have been very blessed.
Just like I hope there is a cure for missing chromosomes someday, I too hope there is a cure for cancer and I know the more participants the more chances there are! Please join Taylor and I on this hike or at least donate to the cause. The hike is a lot of fun and is on a paved road, so no need to be a "hiker." I hope you can make it!
Because nearly everyone has been touched by cancer in some way, we've decided to show our support and make a difference by forming a team to support the American Cancer Society’s lifesaving work in research, education, advocacy, and patient services Using the links on this page, you can join our fight against cancer by clicking to Join our Team or Donate. Today, there is more hope than ever for people facing cancer. We hope you will join our team or make a donation today!
Sunday, January 6, 2013
Saturday, December 8, 2012
Caring for Taylor consumes so much of my time that the subject of a second child is out if the question…for now. And then even when Max and I begin to consider the possibilities we have to be very mindful of the risks and implications of having a second child.
Friday, September 21, 2012
We asked what she was there for and she said very sadly she had to be put under for surgery again. After being born at 28 weeks she lived a hard life of constant surgeries and the usual medical problems frequent visitors of Phoenix Children's Hospital had. She showed scars on her neck and told us how she had a fundoapplication and G Tube to help feed her. Similar to what Taylor would be needing soon.
Thursday, September 13, 2012
So after the doctor gave us the okay to feed Taylor twelve spoons of Stage 2 baby food twice daily we went by the store and bought baby food right away. It was surreal weird, and crazy, all rolled into one. I usually avoided the baby food aisle or even looking at bibs for that matter. So as I walked through the store I seriously wanted to break down and cry from joy. Instead, I became an overjoyed lunatic looking at all the jars of baby food analyzing them carefully, I’m sure I must have looked half crazy to onlookers.
So we began to feed Taylor sweet potatoes and she continued doing well. Max had the camera prepared and we took tons of pictures. And I continued to keep my eye on Taylor like a hawk to make sure she had swallowed the baby food down the tube and was still breathing. And as you can imagine as excited as I was that she was eating, I was also a hot mess unsure if Taylor would choke. And of course she didn’t, she actually enjoyed eating every bit of her baby food.
When I started this blog I promised myself to be honest as I wanted others to see our struggles and our triumphs, and to keep me honest I cried a lot over all the ‘what ifs’, as I had doubts, yes, I did I had many doubts. But the reality is that miracles can happen and prayers are answered. See one day I was bawling my eyes out next to a hospital bed crying over the fact that Taylor may never swallow and then months later I’m ordering a special birthday cake made of only frosting, ha, ha.
Tuesday, September 4, 2012
The week was dragging like most weeks do when you’re anticipating a big day. I was eager to know if Taylor had improved on her swallowing. Shortly after we were brought to the X-ray room where Taylor was placed in a car seat like chair device and was strapped down a massive machine began to display an X-ray of Taylor’s swallowing.
Taylor began to swallow at first and it seemed to be going okay, my heart raced… But since Taylor appeared to be moving a lot the doctors seemed unsure. They then tried the test again with a more less consistency and that time Taylor began to aspirate so the testing stopped.
When I turned to the doctor he narrowed his eyes at me and asked, "Why are you crying? This is good news, isn’t it?" They were tears of joy, tears of relief, of course. I replied, "You have no idea how good. I have been wanting for this day to come for so long!" I had, I really had; I’d actually dreamt of the day Taylor would be able to swallow and imagined how I would react, and as I’m sure you can already deduce, yes, I wept.
So the therapist told us to continue feeding Taylor her usual twelve teaspoons of Stage 2 baby food twice daily, as this also a means for Taylor to get used to eating the consistency of baby food.
All things considered, I was pleased. All I asked of God that day was for Taylor to make an improvement and she did. She had made a huge improvement. I am so very thankful and so very proud of my baby Taylor.
Continued.... until next week.
Thursday, August 23, 2012
I am grateful everyday that I have Max, Alexus, Jacob, and Taylor close to my heart and in my life.
Thursday, August 16, 2012
By the time Thursday morning rolled around the day of the surgery I had had very little sleep that week and I was extremely fatigued. Soothing my nerves immediately was seeing Max’s parents at the hospital; it was comforting to know that we had such a wonderful support team.
When the doctor came in to talk to us he explained the surgery as a routine/typical surgery. He went on to explain in detail what he would be doing to Taylor's vocals. The doctor was very thorough and I was soon set at ease, I trusted in his competence and thought he would do a great job. And though no one ever wishes for their child to undergo surgery, I was very thankful that there was in fact a procedure that would help Taylor one day eat on her own.
Soon after my parents came into the room we met the anesthesiologist. We were asked the same series of questions that most people are asked when they’re about to be admitted at a regular hospital and then he asked, "Has anyone in your family had any problems with anesthesia?" I replied, "No and Taylor has had it twice and it’s always been fine." He then said, "She could be put to sleep twenty times and all it takes is that one time and never come out of it." My heart sank and I began to feel ill in my stomach holding back the tears of his response. He then reached over to take Taylor from me and I gave her one last kiss and hesitantly passed her to him.
A few hours later a nurse came out and said, "Two people can go back to see Taylor Alvarez." Max and I jumped out of our seats. I remember wanting to race back there to the recuperation room to see my baby girl but had to fall back and civilly listen to the doctor as he explained the surgery in detail. Moments later when we were finally able to see Taylor I noticed that she was groggy still heavily sedated from the anesthesia. The nurse however, was nice and allowed me to hold Taylor.
As I held my baby girl, I thanked God for taking such good care of her and thanked Him for ensuring that she smile another day.
Thursday, August 9, 2012
I am an open person and am comfortable sharing my feelings and as such I want to talk to you today about some of my darkest moments. As some of you already know, I’ve been through a lot in a short period of time and our lives (Max and I) were flipped upside down in the blink of an eye. So, it wasn’t a surprise that “Situational Depression" set in. Today, however, I’m getting better and stronger and I’m very proud of that. I have to hold it together, Taylor is my daughter and I need to be her support system.
My mom told me recently, "You're coping with the 'death' of a healthy baby and now you have a new baby you are getting used to." And my mother is right; I really am getting the hang of this. I’m learning a new way of life: a new way to feed a young child; better time management; more patience.
In all honesty, at first I did have my doubts though. Could I really do this? And as anxiety built up I cried many nights feeling sorry for myself, I sometimes still do. I just have to keep reminding myself that it is okay to be frustrated that I have to go through extra effort to take care of my daughter; to be frustrated at seeing just how much Taylor tries to do something and is so close, but yet she just can't get it; to be frustrated that I have to clean up vomit instead of Cheerios. And worse for me yet, is the not knowing when/if my daughter will enjoy the taste of food.
One of my saddest notions for me now is to imagine Taylor unable to eat a piece of her 1st Birthday cake. This truly depresses me. I know that even as you’re reading this you may be thinking that this is ridiculous, it is just a cake, but to me it is much more. Taylor’s inability to enjoy a piece of cake is yet another aspect that separates her from other ‘normal’ children. Now, I know that I’ve been told that Taylor cannot distinguish between a ‘normal’ and ‘not so normal’ life, but I do. It is very true what the others have said, “Taylor’s rare condition may very well be much harder on you the parents, than on her.”
This sadness won’t always be a part of my life. But for now, I’m coping with things the best way I know how. Thankfully, I have had courage to get help and am working to prepare myself for those unexpected daily challenges as I pray for strength to hold everything together.
"Anyone can give up, it's the easiest thing in the world to do. But, to hold it together when everyone else would understand if you feel apart, that's true strength." - Anonymous
Thursday, August 2, 2012
Tuesday, July 24, 2012
By this point, I was holding back angry tears. What’s with delay? I can’t take all this waiting! I needed to know if my daughter was going to be alright and having to wait as much as a day more I felt robbed of peace of mind. More than anything I needed the diagnosis for my own healing process. Later, unaware of my turmoil the doctor simply called and asked, "Could you come in Monday to discuss the chromosome Taylor is missing?" Monday…really? How could she say this to me and leaving me hanging? Why?? Oh wait, perhaps, what they had to tell me was horrible news...yes, that was it. The doctor couldn’t tell me something so awful over the phone, right? And while I sort of understood that, I still cringed, what would I do with myself for five days?! Cry actually. Yes, I cried for two days straight and Googled, in between. Yes…Googled! Well, I just had to know so researching for hours on end about symptoms Taylor had similar to Pader-Willi Syndrome was my therapy except that after learning all the 'what if’s' I was a wreck. The research had taken a toll on me and by time late Friday afternoon came around I was losing it. Bawling my eyes out I decided to call the Geneticist’s assistant and asked, "Does my daughter have Padri Willi Syndrome?" The assistant pleasantly answered, "No, but the doctor will discuss with you the chromosome deletion Taylor has." For me that was enough to comfort me for the time being. Since, obviously I could not Google about nothing I knew.
Taylor was missing line 37 on the bottom (referred to as Q) of her second chromosome, hence the reason the condition is labeled, 2Q37 Deletion Syndrome.
That very same day we received a packet that contained all the information the doctor had regarding this very rare syndrome. I will always remember this day, because this was one of many times that Max’s positive attitude shined through; he turned to me and said, "This is good. We can work with her and Taylor will be okay." He was right, now that we knew what her condition was we now had the roadmap, the GPS of sorts to guide us along the way. Most importantly, I, we, now had an answer.
I did not cry that day, I actually felt empowered. From then on in I was going to do everything in my power to help my Taylor live a long, productive, amazing life!
Thursday, July 19, 2012
Thursday, July 12, 2012
Taylor: I dedicate this online journal to you because you truly live a life that most people would never imagine.
For those who do not know me, my name is Jenna Skousen and am blessed with a beautiful daughter, Taylor Leanne (nine months), and a wonderful man, Max, and his two great kids, Alexus (eleven years old) and Jacob (nine years old). We live in Arizona and seeing how much Taylor sweats these days, I wonder if this is the best climate for her, but with all of our family and friends being here we would not trade that for the world! And seeing as Taylor loves the water, we could always cool her down in the pool.
So, where to begin... Well nine months ago we became the proud parents of an adorable baby girl, Taylor Leanne Alvarez. Taylor was full term, great delivery, seven pounds, three ounces, 19.5 inches, she was perfect! Her birth was by far one of the happiest moments of my life. Shortly after Taylor was born while in the hospital I noticed her breathing was very loud and did not seem right (when they say mother's tuition... they mean it!). So, I talked to the doctor and was told that she had Laryngotracheomalacia (LM), meaning floppy airway, and that after a year Taylor would grow out of it. I was still skeptical, but what did I know? She was my first child and I trusted what the doctors, the experts were telling me. Then we went to Taylor’s first baby check up and posed the same question to her pediatrician, and got the same exact answer. So, she had LM, no big deal, right?
Looking back and knowing what I know now, there were signs. Taylor would slap her arm back and forth from her thigh to her head every time she ate, but don't most kids twirl their hair when they eat or hum?? I assumed it was just discomfort from very bad reflux, typical issue of people with LM. At three months Taylor could still not hold her head up, so I brought this up to her pediatrician. He told me to make sure she did a lot of ‘Tummy Time’. In my head I was thinking, “Okay not sure how much more ‘Tummy Time’ she can do, but guess 24/7 it is!”
In February when Taylor was about four months old she got pneumonia, so we went back to the doctor’s and again I mentioned that fact that Taylor was still not holding her head up. I will never forget her face as the doctor took her hands and pulled her toward him - with her head still flopping back she just smiled and laughed at him, that’s my Taylor. She had no idea what was going on, but still the happiest little thing. So, we scheduled an appointment three months out, yes, three months; neurologist appointment are impossible to get into here in the Valley of the Sun (a worthy piece of advice for you college bound young adults: Neurologists. Now, that’s job security for you!).
So, we went to her well baby check up at five months instead. The doctor gave us the okay to start to feed her baby food, yippee! I was so excited and could not wait to get home to give her baby food by a spoon. I had felt cheated out of the hold the head up milestone so you can only imagine the excitement I had knowing that my little girl would be eating baby food with a spoon! I was prepared.... me loving coupons bought tons of baby food and had them all ready to go with baby spoons and bowls. Then to my shock and disappointment, she would not eat it. Taylor would actually drool, spit it out, and it would literally take an hour to get her to eat a quarter of a small jar. I was convinced I didn’t have the foggiest idea how to feed a baby, I mean there had to be something wrong with what I was doing; everyone knows how to eat, don’t they? Ha! How naive I was! So here I kept trying and to feed her for another week or so and it wasn’t until I fed her rice and she threw up everywhere that I realized something was really wrong. I remember it was at night and I was alone and anytime your child throws up it just wears down on you, at least for me it did. So I called her pediatrician and he said he would send a referral for a ‘swallow test’. Cool, no problem, ‘swallow test’ here we come!
Now, if you know anything about me you’ll know that I cry at the drop of a dime. So, in true Jenna Skousen fashion I began to cry my eyes out. Then, just as I am getting up to push Taylor out of the hospital a manager and a nurse from Radiology come out. Mike, the manager, began to tell me that any financial issues would be worked out and Taylor would get the test done. Then, I was explained the correct financial obligation per my insurance that was much more manageable.
Approximately ten minutes later the manager and nurse expedited Taylor to the back. And there were four women in the room and they were all looking at a screen as I held Taylor's wobbly head up. Then, she was swallowing different thicknesses and all the nurses just gasped in horror. I asked if everything was okay and they said, “No, this is not going how we were anticipating.” I tell you I have never felt so alone in my life and I began to wail all the while holding Taylor as steady as I could. They tried three types of thickness then a nurse said, "Stop. We cannot put her through this any longer." They explained to me that as Taylor swallowed it was mainly going to her lungs called Aspiration. I never took a second to even listen to the word aspiration or what it had meant before this. As they explained that Taylor would have a tube put down her nose to feed and that she would no longer be able to eat anything by mouth I began to bawl, I was so devastated.
Soon after Taylor was admitted in the hospital, Max, and our family were there to support us. That first day about six doctors came in to see her. She had IV's, MRI's done, blood work taken, then doctors, nurses, therapists and other professionals constantly were in her room. I have never cried as much as I did that week. But, I KNEW that God had a plan for us, a plan for Taylor.
Since, that day our lives have completely changed. Six weeks after our stay at the hospital we found that Taylor has what is called 2Q37 Deletion Syndrome. 2Q37 Deletion Syndrome is a very rare and unique syndrome that has affected a reported 100 individuals. Pretty crazy, I know! Our common joke is that we should have played the lottery because we had better odds.
Taylor currently suffers from gastrointestinal difficulties, reflux, frequent vomiting and pneumonia, chronic diarrhea and coughing, small feet, aspiration and sucking problems, eye issues, asthma and respiratory issues, sleep apnea, eczema, LM, hypotonic, torticollis, developmental delays, minor heart conditions, misshaped head, and will be continuously monitored for Wilms Tumor (cancer) in her kidneys every four months. We also have been taught what to do in the event of a seizure. Taylor will also be supervised for mental impairment and autism as she gets older. She seems so incredibly bright right now that we are not worried about this at this stage.
We have appointments numerous days a week, hospital visitations and stays, surgeries, and TONS of testing. From a few doctors we are told that Taylor has this issue because of this, that, and this going on and there is not a way to solve all of them by just surgery. So, will she ever grow out of it? I think most of it yes. Her life will always involve doctors and hospitals, medicines and constant tests of course. But, I know she can handle it and it is my mission is to help her to become the best person she can be.
As for me, people often ask, “How do you do it?” “You're a saint.” I used to think wouldn’t any mother do this for her child?? But I’ve seen so many adopted kids with health issues, I now think, maybe not all mothers are willing to live with the constant heartache and responsibility. And to be honest, living with a sick child is stressful enough, but living with a child whose condition is yet rare at that is a daunting task and certainly not an easy life. But yet I marvel as all of Taylor’s little accomplishments. It is extremely rewarding when Taylor finally accomplishes a task that for most ‘normal’ children is just given. For example, when Taylor held her head up on her own at six months I wanted to shout out to the world how proud I was of her!
Taylor has accomplished so much in this little time she has been here and has shown how hard she works for it all. I consider myself fortunate to be Taylor’s mommy and extremely lucky to have her in my life. Truthfully, I do not know what it is like to have a "normal baby” this to me is normal and it is our life. Would I take her pain away? OF COURSE in a heartbeat. But, I can't and to dwell on that I would miss so many great memories. I am blessed, every day I wake up to a sweet, smiling spirit who adores me. And I too adore her.
My new motto in life... "Enjoy the little things, for one day you may look back and realize they were the big things." -- Robert Brault