Thursday, July 12, 2012

How It All Began...

Thanks to the encouragement of my friend, Maria and my sister, Stefanie who told me I should be writing a book, I started this blog. The way I figured given the challenges Taylor and I face on daily basis writing about them is an excellent way to relieve stress and an excellent way for all of my family and friends who see updates on Facebook to now follow along in Taylor’s journey and get the full story here in this online journal. I have in this initial blog entry attempted to capture to the best of my ability the events that have occurred the last nine months, events that have brought me the most pain and the most joy.  I’ll say this experience has made me appreciate and love those people closest to me in way that I never envisioned.

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!


March 15, 2012 will be a day that will live in history as a day that I’ll never forget as it truly changed my life, and made me a better mother, partner, friend, and person. I arrived at Phoenix Children's Hospital (PCH) an hour early as advised, and we got called to register. So, I sat talking with the intake lady, signing paperwork and such and was then told, “Okay, well that will be $1462.”  “Ummm, excuse me? Did you mean fourteen dollars and sixty-two cents?” No.” The lady replied, “Fourteen hundred and sixty-two dollars.”  Now, why on earth would I be paying so much for this simple ‘swallow test’? I asked myself. Then the lady explained that I would have to pay that plus 10% of every procedure. I knew Taylor had to still see the Neurologist, so I was calculating in my head thousands upon thousands of dollars. Now, keep in mind I had only talked to her doctor over the phone…so was this truly the only solution there was?? For someone who worked at a Children's Hospital, the registration women had no compassion whatsoever, she said, "You know people have put you in their schedules and you are wasting everyone’s time." Her calloused words I will never forget but I had to think, was she right? And was it wrong for wanting another opinion?

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

Thank you Maria Piork for helping edit. Please be sure to follow her at Marialovestowrite.blogspot.com.

50 comments:

  1. Jenna, Your such an amazing Woman and Mother. The story has melted my heart as Im in tears with a mind set of being a mother as well. Taylor is beautiful little girl that will for come these bumbps in the road to be a healthy Girl. God wouldn't give you anything you couldn't handle and your positive attitude is the best thing you have!! From all the years I know you I solute YOU!! love u Jenna and God will heal your family in Jesus name! we love you Taylor!

    Love
    Damaris G, Jayden and Jacob Perdomo.

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  2. You're too sweet!! :) Thanks for reading! Hopefully I can help others with our experiences!

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  3. this is amazing! i enjoyed reading your blog and being aware of so many things out there that many people r clueless about! god bless you guys! your amazing for not giving up!

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    1. Thank you! And never will I give up! She's my life and inspiration! :)

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  4. Jenna,
    I love this and will read every time you publish on it! I never knew what Taylor had or understood it. I actually googled it several times and don't understand what it says lol I love so much Sister! You've always been a strong woman & I admire everything you do for Taylor!I love you & Taylor very much!

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    1. It can be very overwhelming. :) Especially since it's so rare it's hard to find a whole lot on her syndrome.

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    2. Thank you for sharing your story Jenna! I have a new respect for you!

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  5. Jenna, you're amazing! Taylor's smile and God will continue to give you the strength to stay strong trough these difficult times.
    God bless you and your little angel!

    Love you,

    Liz Q Heathcock

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  6. Jenna, I don't know you that well...but I am so proud of you and inspired by you...and Taylor is so precious. Thanks so much for the update...I have been thinking of you both. Love Jacque Riggs.

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  7. You are so strong and amazing and so is your daughter. I know we don't talk much but just to a mother from a mother I admire you. Your daughter is always in my prayers. I know we are just acquaintences through Darcey, but if you ever need to talk I'm here. I know I have reached to you and you were so helpful, so I want to let you know I am here for you too. God bess Taylor and your whole family. Stay strong.

    -Nicole

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  8. You are so strong and amazing and so is your daughter. I know we don't talk much but just to a mother from a mother I admire you. Your daughter is always in my prayers. I know we are just acquaintences through Darcey, but if you ever need to talk I'm here. I know I have reached to you and you were so helpful, so I want to let you know I am here for you too. God bess Taylor and your whole family. Stay strong.

    -Nicole

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    1. Thank you Nicole! I appreciate that and I love to help, so if you have questions feel free to ask. ;)

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  9. You are a great writer. loving mother and patient person.. Instead of feeling sadness for Taylor, I feel inspired. Being so young and accomplishing what she has, is something extraordinary. <3 Taylor! I always read ur posts and now ur blog and I think of you guys often. I watch her grow through your pics online and I think of how amazing she already is! :)

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    1. Thank you!!! It's amazing how someone who cannot even speak is so inspirational!

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  10. Oh Jenna! Im at work and im in tears as im reading your blog. My heart aches for the pain and struggles you go through. But it shows what an amazing mother and individual you are. Babies hold such a grand place in my heart but much more the ones going through difficulties because they are so small, fragile and innocent Yet they are a World of Love. Baby Taylor reminds me of my niece so beautiful, bright and determined to not let her diagnosis make who she is. You and Baby Taylor are such an inspiration!

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  11. Oh Jenna! Im at work and im in tears as im reading your blog. My heart aches for the pain and struggles you go through. But it shows what an amazing mother and individual you are. Babies hold such a grand place in my heart but much more the ones going through difficulties because they are so small, fragile and innocent Yet they are a World of Love. Baby Taylor reminds me of my niece so beautiful, bright and determined to not let her diagnosis make who she is. You and Baby Taylor are such an inspiration!

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  12. Jenna, you are amazing. Even though I have followed Taylor's story in facebook, this BLOG is fabulous. It educates anyone and everyone who knows you and Taylor and your family and the daily footsteps that you walk. Taylor is the LUCKY one, she has YOU!! You are her earthly ANGEL that will LOVE her, who will keep her SAFE, and who will take CARE of her. I never knew that this syndrome existed and I have learned a lot from the information that you have written about. GOD will only give you what you can handle...... YOU ARE DOING AMAZING THINGS AND WITH YOUR DETERMINATION you will PREVAIL. You have all of my support Jenna, God Bless..... keep up the great work.

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    1. Thank you Pat! I definitely need all the support I can get!

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  13. I am so glad you made this blog, and I cannot wait to read more. You are blessed with one of Heavenly Father's choice spirits! I also think you are amazingly strong, Jenna.

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  14. Jenna, you truley are an amazing person and even more amazing as a mother who didn't give up. I being a mother of four could not even imagine how stressful and overwhelming that could be but as a mother we'd do anything even give the world to our kids if we could. God has blessed you with this beautiful baby girl cause he knew you were the Angel who would watch over her and be forever at her side. You are an inspiration!

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  15. Taylor is a little angel. She has angels watching over her. Jenna I am very proud of how you've set aside the things of this world to care for baby Taylor.

    Grandma Sheri

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  16. Aww I love this blog!! Can't wait to read it w/ My litte Little TBug! Taylor has always been special to me. I am a proud Aunt from Day 1 and still feel the same no matter what Syndrome she has! What I do know about my TBug is she has the most amazing laugh ever! I she is always laughing at her dorky nephew's and niece's. Taylor is way smarter than most kids her age and knows no different. Taylor will do great things that normal kids would not even think about doing. I know Taylor and her Mommy will be able to help so many people that others would not know how to approach. For this I am truly grateful to be here and share every moment. Everyone always ask me How is Taylor doing?? I say Taylor is doing great!!! Its her Mom that needs the prayers!! hahaha Jenna you are a wonderful Mom... You have accomplished so much and continue to keep moving forward when most people would just throw in the towel and stay home. The Blog is wonderful and there are not many out there because of the energy it takes to do this. Taylor is not sick she is special and for that we are blessed. I remember when I read that she could die at a young age and I prayed that I would not care what syndrome she had as long as she was here. I prayed that I would help you w/ her whenever u needed me as long as Heavenly Father would spare her life and let her live it with us! He has and I promise to help whenever you need me. I will never say no to babysitting, giving rides, taking to appointments, or anything else like might come up. I will always support my niece in everything she does even special olympics. I will be there through it all because I love my TBug. We are blessed to have a special spirit in our lives and she has helped us all be grateful for the little things. Aunty loves u TBug more than u will ever know...But I will try my hardest to show u throughout ur life!!! Love Aunty Stef....

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    1. Thanks sister! I am bawling my eyes out and You of all people know what a hot mess I can be. I love you!!!!

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    2. Well said by someone who truly knows the meaning of UNCONDITIONAL LOVE!!!

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  17. Jenna this blog is amazing. I can't wait to read more about Taylor's milestones. You and your family are in my prayers. Your strength is inspiring.

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  18. Your baby girl just melts my heart. She is the sweetest little girl ever. I'm so saddened by all her struggles and I cannot imagine the pain and stress your heart must feel, but God couldn't have given her a better mommy. She deserves the best there is and she sure did get the best. Stay strong Jenna! You two are in my prayers and will always be. Thanks for sharing Taylor's story.

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  19. This is beautifully put. Can't wait to hear about all of Taylor's progress. She has a special special spririt and is blessed to have you as her mom. You and Taylor are always in our prayers- Derek and Tiffany

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    1. Love you guys!! Thank you for everything you do for us!

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  20. So happy to see you started a blog! Baby Taylor is going to be an inspiration and blessing to everyone she comes in contact with, whether in person or through this heartfelt blog. I'm so proud of you Jenna and look up to your courage and patience! Taylor is just as lucky to have you as a mom as you are to have her. Love you guys.
    T-$ :)

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    1. She definitely makes an impression!!! Thank you love!

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  21. My dearest friend Jenna. How I miss you dearly. There are no words that I can express that can describe what you, Max and your family are going through. You are the most amazing, intelligent, smart women that I know. I'm so glad that Steph told you to start your blog. I do read your blog ever couple of days. The videos you post to FB are so nice to see Taylors accomplishments. Keep them coming. If you ever need anything please don't hesitate to call me ok. Angelique Maya

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  22. Jenna , Have you gone to the social security office to ask for long time health care . So you don't have to pay for medical care anymore. It does not matter what your finances are. She is a American Citizen and she is special needs.

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    1. I tried that, but they said we have too much assets. Not sure if there is a way around it...

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  23. I didn't use Jimmy's income and I put alot of things under my dads name. I went to the social security office twice and I asked what do I need to do to qualify. I don't want ssi just long term health care for my child because he's special needs. I didnt give up and finally paid off and this nice lady help me. It was at he Glendale office. So don't give up n don't take no for an answer. This situation is going to make u feisty and strong but what mother wouldn't do the same. Email me if u have questions Perez.gisel@yahoo.com

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  24. I need to try that. I have an IRA they said I can't have to qualify...

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  25. My 12-year old grandson has 2q37 deletion syndrome also. I've been researching and reading for years and really the only info I have found has come from the UK (we live in Florida). My grandson has also been diagnosed with Autism with some ID (MR). His key problems are behavioral. Alot of it has to do with his frustration, he is verbal, somewhat. But it seems his immediate family, (me and his mother) can really understand what he is saying. We have had him in therapy since he was 6-months old. He sees a host of specialists too. He also has epilepsy. He is on several different medications, and a GFCF diet. We don't like that he's on medications, but they do help. Anyway, I just want to say tht he is a wonderful, loving boy, and I can't see my life without him in it. I wish you the best of luck!

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  26. Thank you! There is a Facebook group and I'm sure others would love to hear of your journey! Are you a member?

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    1. No. I was just searching web for any updates on the syndrome and came across this webpage. Grandmom in Florida.

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    2. Exactly why I created this! I'm so glad you found it. :) You and/or your daughter can add me on FB and I will invite you to a private group for parents of 2q37 Deletion Synrome children. My name is Jenna Skousen. I know there is another family in FL, so that would be neat if you're close by!

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  27. Thank you! There is a Facebook group and I'm sure others would love to hear of your journey! Are you a member?

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  28. My best friends daughter has this amongst other things. She is 14 months and still cannot hold her head up. She had a cardiac arrest a couple of months ago due to aspirating, is tube fed because of reflux, had open heart surgery FYI fix a huge hole and lots of other issues you've mentioned. She is such a sweetheart and it is so heartbreaking to watch her and my friend suffer through everything and I'm amazed by their courage and strength. Good luck to you and your beautiful little girl

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