Jazlyn's Journey

Jazlyn's Journey Jazlyn's Journey with semilobar Holoprosencephaly Her other conditions are metopic craniosynotosis and diabetes insipidus.

This page is dedicated to our daughter Jazlyn Marie who was diagnosed with semilobar Holoprosencephaly, from which her other conditions have stemmed from. Holoprosencephaly (HPE) is a birth defect that occurs during the first few weeks of intrauterine life. HPE is a disorder in which the fetal brain does not grow forward and divide as it is supposed to during early pregnancy (incomplete cleavage of the embryonic forebrain/failure of the prosencephalon to cleave into the cerebral and lateral hemispheres). Children diagnosed with HPE may have a small head (microcephaly), excessive fluid in the brain (hydrocephalus), variable degrees of mental retardation, epilepsy, endocrine abnormalities, or abnormalities of other organ systems such as cardiac, skeletal, genitourinary, and gastrointestinal. Abnormalities of muscle tone and impaired motor abilities are present in virtually all individuals with HPE. The degree of delay and neurologic problems generally correlate with the severity of the brain malformation. Mildly affected children may exhibit few symptoms and may live a normal life. It is estimated that HPE affects between 1 in 5,000-10,000 live births. Since many pregnancies with a fetus diagnosed with HPE end in miscarriage, the frequency of HPE among all pregnancies may be as high as 1 in 200-250. Current studies indicate that only 3% of all fetuses with HPE survive to delivery and the vast majority of these infants do not survive past the first six months of life. Thankfully, our Jaz has defied the odds...
This page was inspired by another page we found on Facebook (Cayden's Journey with Trigonocephaly (Metopic) Craniosynostosis). We will try to post updates so that everyone can keep track of what is going on with Jazlyn. We will be posting pictures of Jazyn's journey through this whole process. We look forward to your support and thank everyone that love's our little girl enough to keep track of her journey through this process. Your prayers are welcomed and we thank everyone for their support! Hopefully this will be a page where other parents that have a child going through the same thing can find information and encouragement! Please feel free to share this page with your friends, any and all support helps.

Just some pictures from the last two days
01/31/2016

Just some pictures from the last two days

Jaz is doing much better today! She slept through the night and she's tolerating the feeds just fine! We should be abl...
01/31/2016

Jaz is doing much better today! She slept through the night and she's tolerating the feeds just fine! We should be able to go home today. Woo-hoo! Thank you to all that prayed for Jaz and for those that helped financially, emotionally, and physically (like, cleaning my house, the two know who you are!). We couldn't have gone through this without everyone's support!

01/26/2016

Hi everyone! Jaz is a busy girl this week! We have a GI study tomorrow morning at Egleston in Atlanta. The surgeon wants to see where the reflux is coming from. If up top or from the stomach. If it's from the stomach, we may have a Nissan fundoplication in the future.
This Friday Jaz is having surgery to remove her adenoids, have tubes placed in ears and have her g-tube placed. I fought this year so that Jaz wouldn't have to get one...but with her aspirating and still not swallowing correctly, we decided it was time. Jaz is only 19 lbs, and doesn't like to drink juice or water, so controlling her diabetes Insipidus has been hard. So getting the g-tube will also help us manage her DI. I rather see my baby healthy and full, than thin and struggling.
The surgery will be at Egleston Childrens Hospital in Atlanta. We will be there overnight, possibly two depending how Jaz does.
Other than that Jaz has been doing well. She's a fiesta little girl that loves to walk and play ❤️

11/25/2015

It's Jaz's birthday!!! Happy birthday sweet girl! Here's to many more 😘

11/12/2015

Hi guys! Jaz had a follow up with the ENT in Atlanta. They did a scope in her nose and in Franky's words, her adenoids were HUGE, and the scope revealed she has severe reflex.
So we're scheduled for surgery January 29th to have her adenoids removed and have tubes placed in her ears.
She also saw the GI Doctor. They took away the Zantac and have her just on Prilosec but upped the dosage. She'll have a swallow study done to check for aspiration. Feeding tube was discussed but no decision on that yet. They also changed her medicine for constipation.

Here is the flyer if anyone needs it.
10/29/2015

Here is the flyer if anyone needs it.

10/26/2015

We have set up a new site for Jaz. Please help spread the word by liking and sharing. www.hopeforjaz.com

10/20/2015

My heart is full...a year ago we were told to not expect Jaz to walk. Today I cried tears of joy seeing my daughter defy the odds. Just yesterday we lost another child to HPE, and my heart was heavy all day. This video has brought joy into my heart today and reminded me there is hope. Everyday God allows us to have Jaz with us is a blessing. All the doctors appointments, therapies, researching, traveling have all been worth it to see her accomplish this. I don't know what God has in store for the future, but for today I will celebrate this victory and give Him all the glory and honor for where He has brought Jaz and for always taking care of Franky O. Collazo and I through all of this. Love you Jazzy bear, Mami is so proud of you beautiful!

Getting marked for her wires
09/16/2015

Getting marked for her wires

09/16/2015

So, Jaz had a sleep study done last night...and it was rough...
The technician did say she didn't see anything bad, but Most of the time Jaz woke up crying she had dreamt. So now I just have to wait for the results from the neurologist. Hopefully we get some answers because we are tired!

Hi everyone! Just a little update on Jaz. She finally got her AFO's to help her stand correctly, yay! We are also wai...
08/28/2015

Hi everyone! Just a little update on Jaz. She finally got her AFO's to help her stand correctly, yay! We are also waiting on X-ray results of her adenoids. I took her to the ENT yesterday and he confirmed her tonsils are 3+ enlarged, which is very big. I googled what that meant and it's from a scale of 0-4....so yea, they're big which explains a lot. If we have surgery to remove the tonsils and adenoids we'll have to go to Atlanta for the procedure.
Jaz has been progressing some. She's reaching out for stuff more which is great. She still can't quite open her hands to grab stuff, but when she wants something she throws her hand on it and tries to grab a hold of it.
She loves to stand and knows how to put one foot in front of the other to walk. I'll post a video of her one of these days 'walking' now that she has her AFO's.
Thank you all for keeping up with our Jaz! We love you all!

Hi all! Wow, Jaz is a year and a half now. Time is flying by! In this short time, she has seen many specialist and ha...
06/09/2015

Hi all! Wow, Jaz is a year and a half now. Time is flying by! In this short time, she has seen many specialist and has had her share of shots/blood drawn. With that said, we found out last two weekends ago Jaz has diabetes insipidus. It's a condition where not enough anti-diuretic hormone is being produced, so her body was flushing all her fluid out and she was chronically dehydrated...we had no idea. We didn't see the typical signs of dehydration. The only indicator was her chronic bad breath, but the pediatrician told me it was nothing. But thankfully because of Dr. Fearon, we were referred to the endocrinologist and through blood work that's how they caught it. She'll be on medication the rest of her life, desmopressin. Currently, we have to inject morning and night with the medication. But once she's older and able to swallow pills, we can put her on the pill. We're still doing lots of therapy. Going to discuss Botox injections with the therapist within these next few weeks.

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710 Center St
Columbus, GA
31901

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