Sleeping..or lack of

Emma hasn’t slept through the night since before her craniosynostosis surgery. It’s awful and I don’t know how to get her to sleep through the night. She wakes every 2-3 hours to nurse then falls back asleep. She never actually stays down for more than a couple hour stretch. We get like 6-7 hours once a week but that’s about it. 

Has anyone had this issue or have any suggestions?


Rollin’ Rollin’ Rollin’!

Yay Emma! We got her a new insert for her walker from “Kidco”. It’s a great cushion for her and adds more support. She made some small moves in her walker and even reached for her toys!! We are really working on having her reach down for toys since it’s difficult for her to do that. She’s making such great progress it’s just a very long and slow process. 

I’ve included the screenshot of the cushion in case you’re interested in ordering. It would be great for any baby just for some added support!




Once we found out that we were having a baby with hydrocephalus, my Dad suggested Reiki. If you have no idea what that is, you’re not alone. I was not familiar with it either until my pregnancy. Reiki is “a healing technique based on the principle that the therapist can channel energy into the patient by means of touch, to activate the natural healing processes of the patient’s body and restore physical and emotional well-being”. I began going to reiki on a weekly basis a few months before Emma was born. I had 2 reiki masters working on me and my unborn baby. It was definitely a wonderful experience. It made me feel at peace with everything that was happening. I felt relaxed and let my mind just go to another place. It let me not think about my baby for 1 hour and what was going to happen to her once she was born.

Once we found out that Emma needed her craniosynostosis surgery, my Dad suggested Reiki. We resumed our weekly session for a few months up until surgery in January. They worked on Emma and myself separately. I really feel that it helped Emma and helped me as well.

Reiki was truly a saving grace for me and I am forever grateful for Emma’s 2 new “Aunts” who have helped us throughout this journey.


Look then touch!

Yay! Emma finally looked before reaching for her toy on the highchair. Amazing! Such a small feat but she has so much trouble seeing. The CVI is really preventing her from making big strides but we are getting there slowly!! 

This is a great toy, as the flower spins it makes a clicking noise and grabs Emma’s attention. You can find it on Amazon-pictured below. 


Learned lesson

If I can give any advice about having a baby with any kind of issues it would be to ask questions. Never feel like you’re annoying or being a pest. This is your child and in Emma’s case, she was an infant when all this started and she can’t speak for herself. YOU must be your child’s advocate. YOU must question the who, why, what, where, when and how. Nobody else will fight for your child like you will and nobody else will love your child like you do. This was definitely the hardest lesson learned. 


Therapy equipment 

Emma has so many great pieces of therapy tools and equipment that my family and I have either made or purchased. I will post pictures of some of our favorites and most useful. The best thing we’ve made by far is Emma’s therapy platform swing. It is hanging in the corner of her room and we use it for sensory right now. Emma was not tolerating any kind of movement and her PT suggested we build a swing. Luckily for us, my husband is extremely handy and he did just that. Emma uses her swing on a daily basis and it’s awesome. 

Please contact me if you’d be interested in purchasing one of these therapy swings from us. We are looking into building them for other families who can’t afford to buy the “commercial” therapy swings and aren’t able to make one themselves. 


Today..OT and feeding

Today we worked on self-feeding with our absolutely amazing Occupational Therapist. Emma is having trouble seeing her food since her vision is not great (she has CVI-cortical visual impairment). We are really trying to get her to reach for her food on her tray. Emma did put her fingers in her mouth after a few bites which her OT was thrilled about! She’s gotten great with holding her pouches and also using a straw. She even grabbed for her straw while drinking! It’s incredible how such small accomplishments impact her life so much. 


Post-surgery life

Emma was in the hospital for a week recovering from the Craniosynostosis surgery. After a day, she was already beginning to show signs of acting like her “normal self”. She was kicking her legs and moving in her little hospital crib. The doctors were extremely happy with her incision and how it was healing, so they removed her drain and the next day we were  discharged. That was over 3 months ago and you wouldn’t even know she had surgery such a short time ago. Her dissolvable stitches are almost gone. Her hair has grown back almost enough to cover the scar that runs across the top of her head from ear to ear. She has resumed all of her therapies which include an OT, PT, Vision instructor, hearing instructor and speech therapist. She’s slowly attempting to crawl which is a very exciting milestone for her to meet. Each day Emma is growing and trying so hard to move. 

Did your child have this surgery? If so, how did they recover afterwards? Did you notice a difference in your child’s development? I’d love to hear about it!


Emma Bear

This is the story of my little Emma bear and her journey from birth to now. She’s a beautiful 13-month old girl with hydrocephalus. Her entire list of diagnosis’ over the last year are as follows:

  • Premature Infant of 35 weeks Gestation
  • Post Hemorrhagic Neonatal Hydrocephalus 
  • Macrocephaly 
  • Plagiocephaly
  • VP Shunt Status
  • Epilepsy 
  • Sensorineural Hearing Loss
  • Neural Pattern Hearing Loss Bilateral
  • Right Congenital Muscular Torticollis
  • Hypotonia-low muscle tone
  • Early Closure of Fontanelle
  • Metopic Craniosynostosis-Fronto Orbital Advancement with CVR 
  • Cortical Visual Impairment
  • Decreased Visual Tracking
  • Monocular Extropia of Right Eye
  • Dysconjugate Gaze
  • Astigmatism
  • Strabismus-crossed eyes 
  • Hyperopia-blurry vision 
  • Gross Motor Delay
  • Delayed Developmental Milestones 
  • Assymetric Crying Face
  • Pathogenic Deletion of Chromosome 6q26q27-very rare genetic disorder that is linked to a multitude of issues

    Please feel free to ask questions or leave comments about any of these issues. I’d love to know what your experiences have been with them.