Introducing our sweet Bethany!

by Kelly on November 13, 2018 · 8 Comments · in Bethany
Hello!  We are new members of this site, and I am so excited to introduce our sweet Bethany to all of you!  Our Bethany was born at around 36 weeks, weighed 4lbs 1oz, and she has been our sunshine girl ever since the first moment we laid eyes on her.  She has an awesome 10 year old brother, and the most loving 7 year old sister, both of whom she adores.  There is so much to share, and my hope is that something we’ve been through with her would help or encourage someone else out there who has also been blessed with a baby/child with wolf-Hirschhorn.
Bethany was diagnosed with Wolf-Hirschhorn when she was 9 months old, after countless doctors appointments, specialists, and tests.  It was not a diagnosis we were expecting…and was quite difficult to accept.  For us, we found out about her in little pieces…which looking back I am thankful for because had the doctor walked in after she was born and told me she would have a cardiologist, a neurologist, an ENT, and GI specialist, etc, I probably would have had a nervous breakdown!  When she was born we just thought she was small, she had a sacral dimple, and her eyes seemed to have trouble focusing and would drift outward.  A month later at a routine dr. appointment with her pediatrician we found out she had a heart murmur which lead to a diagnosis of a narrow heart valve and a couple holes in her heart.  A couple months after that, we found she had hearing loss on the right side.  I got her started in therapy because she had low muscle tone, and the therapist guided us on the path to our geneticist.  Then the seizures started.  I still remember the day I got the call from the genetic counselor at Nationwide Children’s in Columbus.  She said they had Bethany’s results and asked if I had a comfortable place to sit and chat a while.  My heart sank, I didn’t want there to be a reason to ‘sit and chat.’  After listening to her rattle off several dismal statistics and tearfully trying to write everything down on a random piece of paper, we hung up and I felt….terrified.  Looking back I am so thankful that we have such a supportive, loving family, the best church family and friends, and our faith in Jesus Christ that got us through some of the most difficult and challenging times.  They all reminded me that Bethany was not a mistake, that God had a plan for her life and that her syndrome would not define her.  I am thankful that the Lord saw fit to give us Bethany…She has made our family closer, our love deeper, our nights shorter, our hearts bigger, and our snuggles sweeter.  She truly is a gift from the Lord, the icing on our cake, she is pure joy.
Since her diagnosis, we’ve had our ups and downs, but I am happy to say we’ve had way more ups!  And the endless appointments and tests have slowed WAY down, which is….fantastic.  She has had one eye muscle surgery, which was very successful…she has had a tear duct surgery (she had constant teary, goopy eyes) – this was also successful and made all the difference for her!  She has had one set of ear tubes and we are looking at a second set and possible removal of her adenoids.  Her heart issues have all resolved, her holes closed and her narrow valve is widening, which means she may not need a cardiologist much longer – thank you Lord!  She has a wonderful neurologist and her seizures are very well controlled on Keppra.  Fevers seem to lower her seizure threshold so we get a little nervous when she gets sick, but we alternate motrin and Tylenol to keep fevers down and we are able to give extra seizure medicine during her fever which has been extremely helpful.  I should mention that Bethany has 2 types of seizures, complex partial (where she rapidly blinks her eyes for a 1-2 seconds at a time, as if a bug has flown in her eye), and then the full blown grand mal seizures (of which I wish didn’t exist).  We’ve had hospital stays here and there because illness is just harder on her, we are blessed to have encountered some of the kindest and most caring nurses and doctors and we are always thankful to come home and get back to normal after a hospital stay.  Our Bethany is a trooper.
She has glasses that she REFUSES to leave on her face, this is a battle I’ve all but given up on….maybe someday she will leave them on!
Right before she turned 3 she figured out how to sit up on her own!  This was a HUGE thing for her and we are just so thrilled.  It was surreal to walk back to get her out of her crib and see her sitting up waiting for me, as if she’d been doing it for years!  To watch how hard she struggled to do something that comes so easily for most others was just….well she amazes me.  She is still more interested in people than she is in toys, but that’s coming along too.  She will grab at things around her and is able to grasp on to toys that she previously wasn’t able to (or just wasn’t interested in).  She recently started turning the pages of board books!  She has ankle braces that she wears when we work on standing, or when she’s at PT, and she is able to balance and stand against a solid surface behind her for short periods of time. So encouraging to see!  She also loves music, she enjoys a cute little musical cartoon type show on Netflix (little baby bum) and she lights up whenever her 7 year old sister sings (which she happens to do A LOT!).
She LOVES to swing, and to be rocked….we had kind of a hard time finding an appropriate outdoor swing because of how tiny she was and she still needed the five point harness, so we ended up using the fisher price space saver high chair (the one that clips to a chair) and we attached it to our bench swing outside.  She loves it!  She can now do a bucket swing with a blanket tucked in around her, but she still loves the other one as well 🙂  She loves to be outside, loves to be in the water, enjoys stroller rides, petting our kitties, and loves an audience 😉  She isn’t talking yet, but she squeals, laughs…oh to hear her laugh, it is the sweetest giggle and needless to say, whatever she finds funny we do over and over and over until it’s no longer funny to her 😉  Funny how she gets her point across quite nicely without ever saying a word…She shakes her head ‘no’ and recently we’ve seen her wave just a couple of times!
She recently gave up her bottles cold-turkey, which sent me in to a panic wondering how I was going to get enough fluid in her.  Her wonderful speech therapist told me about a cup called the honey bear.  It’s a cup that literally looks like a honey bear but has a lid with tubing that acts as a straw and I’m able to squeeze it to get the water to her mouth as she is not quite able to suck it up on her own yet.  It has been great for her, I got it off amazon if anyone else would like to try it or thinks it would help!
She eats mainly all pureed food, I make most of her food in my vitamix…hoping that someday she’ll get the hang of chewing, but until then I’m happy to make whatever her little heart desires 🙂  She LOVES ice cream and if anyone else in the house has some, you better believe Bethy ha a bowl too.  It does not go over well if Bethy gets overlooked when ice cream is involved :).
Oh, and you know that piece of paper I mentioned?  The one with all the statistics on it?  I threw that away.  There’s way too many positive things about our Bethany to focus on satistics…and with God, there is nothing impossible.  I hope to encourage others out there who are maybe just starting out on their journey…it may be different than what we planned or envisioned, but these precious little ones are such a blessing.  They really are pure joy.
 
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8 Responses to Introducing our sweet Bethany!

  1. Jamie says:
    November 13, 2018 at 8:35 pm

    …Love this little girl! Her family has truly been blessed by her. She truly is a precious gift from the Lord!

  2. Anitra says:
    November 13, 2018 at 10:47 pm

    Kelly! What a wonderful post – thank you so much for sharing about your journey and for telling us all about sweet Bethany! So much of what you shared echoed our journey with our daughter Elsa – from the drifting eyes, to the hole in the heart, to the two kinds of seizures. Developmentally, Bethany and Elsa are quite similar at the moment. (Elsa is 6.) My daughter isn’t able to eat orally though. How exciting that Bethany is! It sounds like you all have passed through some challenging times and that things have leveled off for you a bit. I’m so grateful for that! It’s so good to put the scary stuff behind you, when you can, and focus on the gift that your child is to all. Blessings to your crew!

  3. Wilma de Haan says:
    November 15, 2018 at 3:55 am

    Loved reading your story. Lots of love to you all. Xxx

  4. Nina says:
    November 15, 2018 at 11:56 am

    Hi Kelly! Are you part of the WHS support group on Facebook? I’d love to find a way to message you privately. My daughter has WHS and we, too, go NCH to see numerous specialists. We’re still early in the journey, but your post is so full of hope and joy. Thanks for sharing! <3

  5. Kelly says:
    November 15, 2018 at 1:00 pm

    Hi Nina, I am not on Facebook…but if theres a way to get my email address to you privately on here I could do that…?

  6. Erin Brooks says:
    November 16, 2018 at 10:00 pm

    Although I have only had the pleasure of meeting Bethany once, I could tell in seconds that she was an absolute delight to be around. Her eyes, smile, and sweet personality- she’s a true little miracle. I have been working with individuals with developmental disabilities from ages 3-22 for 17 years now. I can honestly say that I learn something from my job everyday. Whether it’s a way to communicate, medically & emotionally assist, different diagnoses, I can honestly say they teach me more that I teach them. Wolf-Hirschhorn is not a diagnosis I’m familiar with. Seeing this post about Bethany and her family’s journey has been an eye opening experience. Bethany will continue to touch lives of others everyday. I believe That children such as Bethany are angels on earth. They have the ability to warm your heart during life’s coldest, darkest moments. Thank you for including me in the post, Kelly. Bless you and your entire family. What a beautiful blessing little Miss Bethany is, and will continue to be. I look forward to learning more about WHS.
    Take care, and God Bless.
    Erin Brooks

  7. Barbara Vollmar says:
    November 18, 2018 at 3:41 pm

    Kelly – what a beautiful well written story of your family’s journey with Bethany. It sounds like you have
    already made connections with others who will gain from you sharing her story. God has blessed her with a family that loves her dearly. God bless you!

  8. Ana Silva says:
    December 2, 2018 at 8:43 am

    Loving this story! I want updates !

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