Jan 27, 2010

Hunter's Story


My name is Chrystal Wagner. I have a wonderful husband and two beautiful children. Hunter is 4 ½ years old and Caitlin is 2 years old. We have lived in Lehi, Utah for 4 years now. Now to our story-

We had tried for a year to get pregnant with our first. After much frustration we turned to the doctor to do some fertility testing. Meanwhile we decided to start the adoption process just in case. Everything showed up fine with me but my husband ended up having a problem that only needed surgery to fix. Within six months I was finally pregnant and we were elated. My pregnancy went well and I was very healthy. I went all the way to my due date before going into labor. This is where the story starts to take a turn. I was in labor for something like 36 hours all said and done. When my contractions got close together we went to the hospital. Unfortunately I was not progressing. They kept sending me home and telling me to try and relax. Finally the following evening my husband called and said he was bringing me to the hospital and that they better admit me. After about 15 hours of labor, I was only dialated to a 2 ½. I wasn’t progressing but my contractions were really bad (all back labor). To sum it all up, I should have had a C-Section. I ended up on an epideral all night and had problems with my blood pressure which in turn put my son in distress. He was finally born the next morning. The doctor used forceps to pull him into the birth canal, but then I delivered him the rest of the way. He was too big for me and I ended up with 4th degree tearing. Not a fun first time experience!! He weighed in at 7lbs. 13oz. and was 20 ¼ inches long. He had a full head of hair and was just beautiful. He had some minor breathing issues at first so they took him to the NICU. I was able to go and get him from the NICU hours later.




Hunter did fine all day other than having a really high pitched cry. We were definitely not ready for what was about to unfold. Later on in the day they took Hunter to get his first bath. My husband went with to take pictures. As they were bathing him my husband noticed that his eyes were jumping (nystagmus), and he became alarmed. He told the nurse that it didn’t look normal and before he knew it the NICU team was there taking my sweet baby away again. They did an ultrasound that night and found grey spots on his brain. They told us they weren’t sure, but that they thought it might be cancer. We were devastated. The next day they ran a CT Scan and found a Occipital Lobe Fracture (from the forceps). This had caused residual bleeding and they thought that the swelling could be why his eyes were jumping. Hunter was in the NICU for the next 5 days. Other than the fracture we thought everything was fine. Once we got him home we learned differently. We had him home a little over a week when he started displaying seizure-like episodes. We called the pediatrician and he said to bring him right down. The doctor was able to see what we were talking about and immediately sent us to the PICU. Hunter had an EEG ran and an MRI. The EEG came back normal and the MRI showed residual bleeding on the front of his brain (forehead). At this point they still thought it was all from the fracture. Hunter’s problems continued and after a 24 hour EEG and other tests we still didn’t have any answers. We decided to head to Utah and see someone at Primary Children’s Medical Center. We showed them video of Hunter’s episodes and they had no idea what it was. At 5 months old, Hunter was diagnosed with Laryngomalasia which he needed surgery for. About a month later we noticed Hunter not using his right arm. We got very worried and immediately called the neurologist. We traveled once again to Salt Lake City for another visit. Dr. Lloyd (our neurologist) consulted with Dr. Swaboda about all of Hunter’s symptoms. After putting everything together they came to a diagnosis. Hunter had Alternating Hemiplegia of Childhood. We were fortunate that Dr. Swaboda was the one consulted about our son because she is actually the expert and one of the only neurologists researching Alternating Hemiplegia of Childhood. Hunter was 8 months old when diagnosed. What a blessing to be diagnosed as early as he was!



16 months old


It was such a relief to finally have a diagnosis. I now had a direction to go in to helping my son. AHC (Alternating Hemiplegia of Childhood) is a very rare disease (1 in 1 million) and the cause is unknown. There are less than 250 worldwide cases. There are a wide range of symptoms with this disease. Most of the kids with AHC display seizure-like episodes early on that seem to get better as they get older. They are all very sensitive to their environment, i.e. wind, water, cold temperatures, light, loud noises, unfamiliar people/places, and irregular eye movement or nystagmus. Later on the children start to display paralysis symptoms. The paralysis comes and goes and can be one side (meaning 1 arm and leg) or full body (bilateral). Most of the AHC children are very delayed and have speech problems. On the severe end some don’t ever walk or talk. There is also the chance of developing a seizure disorder as they get older.

They started Hunter on Topomax hoping to get the seizure-like episodes under control. We immediately started Early Intervention to help with his delay. He continued to work with therapist through EI until he turned 3 years old. Nine months ago we made the hard decision to finally get Hunter a g-tube. He gradually stopped eating and even fought his bottle. Since then, he has gained 8 pounds and is a lot stronger. We believe that this has had a great deal to do with his current progress. In the last 6 months, Hunter has started getting into and out of sitting by himself, pulling to kneeling, and on occasion he has pulled to standing. He is very active and we are hoping that he will eventually walk. He doesn’t talk (we believe this is something that has to do with the Topomax). He currently gets PT, OT, ST, and Special Needs Preschool all in-home.
Hunter is a happy little boy that brings joy to everyone he meets. He loves music and so we watch a lot of Barney, Wiggles, and High School Musical. He also loves sports, football being his absolute favorite. He is very delayed, but we love him just the same. I love his smile-it just lights up a room!! We get comments about his pretty blue eyes all the time.



3 Years Old


So our journey to this point hasn’t gone without its struggles. I just take it day by day, trying to give Hunter everything he needs. My advice to other parents dealing with any kind of diagnosis is to be an aggressive advocate for your child. Don’t let doctors tell you that they are “developmentally delayed” with no diagnosis. I believe that is cop out. Having a special needs child has changed my life. It has made me dig deep down to realize what is really important. Hunter is a HUGE blessing to us. We cherish everyday with him and love him for who he is. My advice for those needing support: reach out to other special needs parents (they always understand what you are going through to some degree). I have also followed a few blogs that always have inspirational things to help me. Above all l would mention that my faith in family and the support and love of others is what has got me to this point.



4 Years Old

15 comments:

Candace said...

What a doll baby :0) So nice to meet your family! I sure can relate to your birth experience...been there myself.

Rachel said...

Wow Chrystal! He's pulling himself up now? That is so wonderful. Yay Hunter!

This is great. I'm glad you were able to tell your story here.

Sarah Emery said...

What a great site ! I too will have to get involved with this. Us special moms need all of the love, support and inspiration we can get. We are fighting a HUGE fight for our kids and our families.:0) You've done AWESOME Chrystal and I am SO grateful for our friendship. What a lucky little boy Hunter is !

Danyele Easterhaus said...

ok, hunter is quite possibly the cutest thing i have laid eyes on! his sweetness exudes through the monitor at me! he's so precious! soooo glad to meet you and i am so glad to hear that hunter is progressing...thanks for sharing!

April said...

What a beautiful boy! Thank you for sharing his story!

Kat said...

He is absolutely adorable. And I can just imagine what a special blessing he is in your family. It is amazing all that he is doing now. Thank you for sharing your story.

Dwight and Jessica said...

I love my sweet little nephew! Chrystal, I don't think I've said it enough, but you and Dwayne are amazing parents and you both are exactly who Hunter needs in this life! I am grateful to be close enough to see his progress and I am so excited for you guys and what the future holds! Hunter's pictures show his sweet spirit and he truly does light up the room with his smile! I love him so much!! Look at me, blubbering all over my keyboard! lol Kiss that little angel for me (and Caitlyn, too)!!! Love you guys!!!!!

Cynthia said...

I love my sweet little nephew and feel so blessed to be his Aunt! Hunter is so fortunate to have intelligent and loving parents. I KNOW he will continue to make progress with you both by his side!

I love you all more than words...

Jill said...

I love love love your family picture. Hunter looks so happy. I'm so glad you have the opportunity to share your story here. Tara, you are really filling a need. I am constantly uplifted by reading the stories on this blog. It inspires me to do all I can for my kiddos.

Mo said...

Clearly, he's an angel. Glad to know some of your story...thanks for sharing!

melissa said...

Thank you sooo much for sharing. I definatley need this blog in my life. I agree with everyone else, hunters sweetness just leaps out of the moniter. You can see it in his eyes. He is truly a special little boy. What a handsome little guy!!!

Anonymous said...

Chrystal,
Loved hearing and reading the story again! I am so glad that Hunter has a mom like you. You truly take your time with him and give him all the quality care that he needs 100 percent! I have never seen a mother devote her time and effort to her son such as you. He is very fortunate to have you.
Your knowledge about his condition is phenomenal and it shows that you care not just for Hunter but for people that can benefit from his story. Sharing is caring. keep up your great work and love!
love ya girl,
cinbad!

Melissa said...

Chrystal,
You amaze me at how organized you have remained even with your children and especially with having Hunter's disabilities. You are my idol and I hope to some day be on top of laundry and household duties 1/2 as much as you are. You are the best Mommy Hunter could have ever been blessed with.
Love ya girl,
Melissa

Mandy said...

Thank you for sharing your story it is always inspiring to hear these stories and yes I have clung to those with children with special needs. Even though they may not be going through the same thing they understand the pain, struggles, heartaches, and the joys of the little things they accomplish!!
He looks like the sweetest little boy and his smile is contagious. His eyes are the window to his soul!! What a neat family!! Thanks again for shating!!

Anne-Marie said...

Wow. What a journey you have been on. You truly are one amazing woman and Hunter is such a beautiful boy. He is so lucky to have you as his Mother and you are so wonderful to share your story and reach out to other parents with kids with special needs. Thank you for your support and encouragement as well. You are just fantastic, Chrystal!

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