HoPE for Elaina

Elaina was born with semi-lobar holoprocensphaly, microcephaly, and a cleft lip. We found out a week later that she has diabetes insipidus and refractory epilepsy. Elaina has spent under 30 days of her 4 month life at home with her big brothers Emmett (6) and Robbie (4). She has spent 12 days in NICU at the IWK for her diabetes insipidus diagnosis where she dealt with sodium levels as high as 168. I then spent another month in the SJRH with her trying to control her seizures.

September 19, the day after Elaina’s big brother Emmett’s 6th birthday, I brought her in for increased seizures and was admitted. We then went to the IWK to start a ketogenic diet. We got there October 3 and returned to the SJRH on November 10.

Today, Elaina is dealing with daily seizures while on many antiseizure medications. Her ketogenic diet has started and is showing some good signs. Better sleep, being more vocal, and tracking people with her eyes. We still deal with lots of uncontrolled seizures, but thankfully not many cause her distress. Very soon we will be working with the hospital to set up stuff at home for her. A paediatric stat monitor to watch her oxygen and heartrate. A feeding pump as she is continuously fed for 20/24 hours. Thankfully her formula and the ingredients are covered by the NB government for tube fed children. But instead of finding ourselves ready to take her home, we are second guessing things. We are in need of video baby monitors, a proper crib and a bed wedge so she is more upright. We will have ongoing rental fees for her as my insurance doesn’t cover her feeding supplies. We’ve also had to invest in many medical and household items specifically for her. A glucose/ketone reader (not covered by insurance), a new blender, scale and containers for me to create her formula daily.

Adding to the stress is our van going in to the mechanic to pass inspection, leaving us with a car unable to fit a family of 5 for the next few days and an unknown mechanic bill.

We will also be attempting to get our boys in daycare and after school care to help Derek have the ability to take care of Elaina as the new year approaches and I prepare to return to work full time. I’ve spent 4 months with a full time medical job of taking care of Elaina and he will have to learn that with me and him both juggling the boys schedules, and my 8:30-5 job.

With Christmas just around the corner, and our application for help from social development’s program for families with disabled children stuck in the beginning faze, money will be tight with just EI and child tax. We’ve had blessings from many, financially and physical.

Thank you so much. Here is a bit of information about holoprosencphaly.

“ Holoprosencephaly (HPE) is the failure of the prosencephalon, or forebrain, to develop normally. The forebrain is a region of the brain in the fetus that develops into parts of the adult brain, including the cerebral cortex. Instead of the normal complete separation of the left and right halves of the forebrain, there is an abnormal continuity between the two sides. There are several different types of holoprosencephaly. In the alobar form, there is no separation between the right and left halves at all. In semilobar HPE, at least some separation of the two halves is present. In the lobar form, most of the brain has separated into right and left sides, though there is incomplete division into the two halves.

Holoprosencephaly is a malformation sequence with a very variable degree of severity for both the brain and facial abnormalities. Intellectual disability is associated with HPE and seizures are often present.

Children diagnosed with this disorder may have a small head (microcephaly), excessive fluid in the brain (hydrocephalus), facial abnormalities, tooth abnormalities (single central incisor), cleft lip and/or palate, epilepsy, and/or endocrine abnormalities. Abnormalities in the formation of the nose may also occur.

Holoprosencephaly may also affect other systems in the body. Defects in the pituitary gland can cause an abnormally low level of sugar in the blood (hypoglycemia), low levels of sodium in the blood, or genital abnormalities.“