When Gabrielle was discharged from NYU Medical Center last August following her hemispherectomy she was just beginning to take a few steps on her own again. She would require many more months of intensive rehab to regain function. When we walked into Raleigh Neurology and met Anna Romanosky, the physical therapist that would be working with Gabby, we were skeptical. How would she compare to the therapists at NYU? Would she have the skills necessary to work with our daughter?

It wasn’t long before our skepticism was replaced with trust. In a few short weeks I was raving about Anna. After 6 months of 3-4 weekly visits we wrote this letter to Ms. Anna:

Dear Anna,

Thank you for being an exceptional physical therapist. From the first time you worked with Gabrielle following her hemispherectomy we were impressed. You are incredibly dedicated to helping children reach their full potential.

Motivating a child to focus and work on the very part of their body they want to ignore is no small task. You however are obviously gifted in this area because you make it look surprisingly easy and fun. Your energy and creativity have captured our child and we’re quite certain that Gabrielle believes she is going to “play” with Ms. Anna when she attends therapy.

Anna, your commitment to Gabrielle’s rehabilitation is amazing. You are never satisfied with her current accomplishments but always striving for more. You have made calls to coordinate her care after hours, you have researched constraint therapy, electrical stimulation, and splints from home, and you have purchased toys on weekends with our daughter’s next therapy session in mind.

We want to thank you for caring so much. We want to thank you for always going the extra mile. We want to thank you for making an unforgettable difference in our daughter’s life.

May God richly bless you for the difference you make in the lives of so many children.

Love,
The O’Melia Family

Unfortunately for us, Ms. Anna moved to Washington, D.C. about a week ago. She will surely be missed but we wish her the very best!

Just a short video to show you what Gabby is up to these days:

I know it has been way too long since I updated this blog. At first, I was just surviving the last trimester of pregnancy with an insanely busy schedule of therapy appointments, OB appointments, and life. Then I was just trying to get back on my feet from my cesarean, an infection of my incision, and breastfeeding woes. Next the baby colic set in which was not a good mix for homeschooling and 7 therapy appointments a week. Listening to screaming for hours a day is exhausting. All of this seemed minor though compared to a day with seizures. Then on February 14th we thought we saw a seizure. It was a very minor trembling/shivering episode that lasted maybe 15 seconds but something nevertheless. We began watching Gabby like a hawk. She had 2 more of these episodes about 2 weeks later and we contacted Dr. Orrin Devinsky her neurologist at NYU and Dr. Howard Weiner her surgeon.

Have I mentioned that I love these two men??? They are awesome. They always respond to my emails within the hour, even if they’re vacationing in Colorado! They recommended we get an MRI and an EEG. We had both of these completed locally at Duke. Dr. Devinsky also suggested that we may want to increase her lamictal some. The EEG looked fine but it was only an hour long. The MRI looked good as well. It was negative for hydrocephalus and showed no apparent shifting.

Over the next week Gabby’s behavior worried us. She was acting very moody, the left side of her face was extremely droopy, and both her therapist and myself noticed increased left lower extremity weakness. We became concerned that she was experiencing subclinical seizures or seizures in her sleep that we weren’t seeing. We flew her up to NYC and she was hooked up to the video EEG for 5 days. The neurologists at NYU did not see any seizure-like activity. They said the left side looked great. They reported there is some discharging from the right occipital lobe but it appears to be completely disconnected and has atrophied significantly. We took Gabby off of Lamictal, thinking this may have been related to the worrisome behavior, and she remains on a slightly increased dosage of Trileptal along with her nightly klonopin. She has been doing amazingly well over the last 3 weeks.

Gabby’s talking and her ability to communicate with us has really begun to soar over the last few months. She is saying at least 50 words now. What a gift this has been once you have questioned whether you will ever know your child’s thoughts and needs. To see Gabby enjoying books, and music, and saying the names of each of her siblings is so wonderful. She calls”mommy”, pats me on the leg, and asks for her “bup”, when she is thirsty. I never new if we would get to this point…. Thank you for this, Jesus.

We took a trip to the beach this past weekend and I felt so blessed to be there with our 6 children. So blessed that we didn’t need to bring along a wheelchair or any medical equipment. So blessed that we could set Gabby down in the sand and watch her run with the other kids. So blessed that Gabby ran down to meet each wave and then turned to gallop away before the cold water could catch her little toes. I can not really describe the joy her smile brings to my heart. I can not really describe how far she has comes so I will have to upload a video when I get a chance.

We continue to be thankful for each day…. each moment we have together.

Love,

Kelly

Just a few videos of Gabby’s birthday celebration if you wish to see for yourself how Gabby enjoyed her second birthday.

Gabrielle turns two years old tomorrow. She has had a year filled with many ups and downs and much uncertainty.
We really did not know what her 2 year birthday might look like 6 months ago.

Today we watched Gabby’s eyes light up when she saw her cake and she listened attentively as we sang “Happy Birthday”.
We then witnessed pure bliss as she daintily fed herself one bite of cake at a time until the entire slice was consumed.

She ended the evening with a lot of good walking fueled by the sugar coursing through her veins.
We have so much to be thankful for on this second birthday.

I apologize if you have been wondering how Ms. Gabrielle has been doing over the last month. It has been an absolute whirlwind since we returned home and there has been little time for updating this blog. We have battled the stomach flu for 9 days which meant several sleepless nights and children vomiting on bedding and each other. Gabrielle had two other viruses the first of which landed us in the ER at Duke less than 48 hours after arriving home. We had a CT scan of the head completed which ruled out hydrocephalus and by the time we were discharged she was acting like herself again. We had an OB appointment and ultrasound which confirmed that we’re expecting #6 and that it’s a girl. I began homeschooling the three oldest a month ago in between Gabrielle’s 8 weekly therapy appointments and I still wonder why I can’t keep up with the laundry!

Okay, now for the latest on Gabby. She is doing great! We have not seen any seizures. She continues to take Trileptal, Lamictal, and Klonopin at bedtime. Our neurologist, Dr. Orrin Devinsky, recommended we not reduce any meds for at least one year after surgery. We will return to NYC for follow-up appointments in November at which time they will do an EEG just to take a peek at things.

Gabby is walking pretty well on her own now. She is more shaky just after waking and then as the day progresses her walking becomes more steady and natural looking. The video is from first thing in the morning so she is a bit more unsure of that left leg. As of last week, Gabby no longer requires the AFO(lower leg brace) on her left leg. Her left ankle has regained enough strength that she is now able to walk around barefoot again! Just another thing I have grown to appreciate through all of this…seeing my child prance around with her little piggies showing.

Gabby’s left arm has been slow to show any return. Her therapists have begun using electrical stimulation therapy to see if they can increase function of her left lower extremity.

Gabrielle’s speech is still very limited although she is communicating fairly well through signs, pointing, nodding, and shaking her head. She is smiling a lot, laughing, and loves to give hugs and kisses. She is sleeping well again and loves to interact with her siblings.

We are loving being back home together again and the absence of daily seizures is an enormous weight that has been lifted from our shoulders. We praise God for leading us to this point and giving us this much treasured time together.

Hopefully another update will follow soon!
Kelly

Tomorrow is the big day! We will be discharged and should arrive home sometime on Friday. Gabrielle has made amazing progress over the last two weeks. She is walking while holding my one hand and can take steps between people or stable objects. She is able to move fairly well on her hands and knees now and she can independently get herself to a sitting position most of the time. The recovery of her left arm has been slower and she really does not move her left hand at all yet. The symmetry of Gabby’s face has improved and she is compensating well for the visual field cut which resulted from surgery. A CT scan of the head was completed and it showed no evidence of hyrdocephalus. Horray! The doctors say that normally if there is going to be a problem with CSF drainage it would have occurred by now so this is great news.

Overall, Gabrielle is a completely different child than she was 6 weeks ago. I think back to when we arrived in rehab and she couldn’t even maintain a sitting position or hold her head up straight and now she is cruising down the hallways like a little spit-fire trying to keep up with her fellow rehab buddies. I feel so much better about going home. Gabby still has a lot of work ahead of her and she begins outpatient PT first thing Monday morning. They are recommending she receive about 10 hours of therapy per week at this point which will make for a busy schedule. I am excited though to see the milestones Gabrielle can achieve with those nasty seizures behind her.

I want to thank all of our family and friends who have carried us through these last few months. We wouldn’t have been able to come to NY to get the very best care for our daughter without the help of so many of you. You have so unselfishly given to get us to this point. We pray that God will provide us with many opportunities to give as generously as all of you have given. We thank God for His mighty hand in all of this and for the amazing people He has placed in our life.

Thank you!
Kelly

Gabrielle is doing better every week. Her fevers are gone. She is walking with some assistance. She is learning to squat and stand. She is beginning to pull herself up to a sitting position. Gabby is communicating more every day. It is mostly nonverbal but the babbling is increasing as well. We have not seen any seizures in one month. We continue to pray she will not develop hydrocephalus.

It looks like we will be finishing up here in about two weeks. Two more weeks until we can be together again as a family. This has been a very long journey. A journey through a valley that has had some pretty dark spots. I wonder what God has in store for us? I know we have been through this valley for a reason and I wonder if we are nearing the end. God has been refining us through all of these struggles. He has been preparing and equipping us for something in His great plan. He led us through the darkness and I believe He will again lead us onto higher, lighter ground as changed people.

The following poem is called “And God Said No”. To me it is a reflection about why God doesn’t prevent us from passing through valleys and why He allows us to fall into pits.

And God Said No
By Claudia Minden Weisz

I asked God to take away my pride,
And God said “NO”
He said “It was not for Him to take away
But for me to give up.”

I asked God to make my handicapped child whole,
And God said “NO”
He said “Her spirit is whole
Her body is only temporary.”

I asked God to grant me patience,
And God said “NO”
He said “Patience is a byproduct of tribulation
It isn’t granted, it is earned.”

I asked God to give me happiness,
And God said “NO”
He said “He gives blessings
Happiness is up to me.”

I asked God to spare me pain,
And God said “NO”
He said “Suffering draws you apart from worldly cares
and brings you closer to me.”

I asked God to make my spirit grow,
And God said “NO”
He said “I must grow on my own
But He will prune me to make me fruitful.”

I asked God to help me love others as much
As He loves me,
And God said, “Ah, finally you have the idea.”

Gabrielle’s fever is slowly improving. They began giving motrin round the clock to help suppress the inflammatory response and now we are trying to wean her off of it. Therapy is slow going. One day you see such progress and the next you feel like you’re taking steps backward. I guess you have to gauge progress in weekly chunks and then you really begin to see the improvement.

Duff left Monday to meet up with the kids and now they are all in NH together. I included a picture above, of the 4 kids together again! Gabby and I will probably be here for a few more weeks and we continue to pray we won’t see any signs of hydrocephalus.

I no longer have a computer here and I’m presently updating on
an iphone so don’t be concerned if the updates are less frequent.

Love,
Kelly

Gabrielle continues to spike daily fevers up in the 103-104F range. We are now medicating her around the clock with Motrin which has helped keep her more comfortable. Her blood counts look good and continue to improve. All of her cultures remain negative at this point. We are expecting the fevers will begin to disappear as her immune system settles down. We are so thankful there are no other signs of infection. Gabrielle was able to participate in a full day of therapy today. She is making progress in her sitting and standing. She is smiling more and beginning to trust the therapists.

We are working on the logistics of getting out of the apartment, getting Duff and the kids to NH, and setting Gabby and myself up for several weeks in the hospital on our own.

I’ll post more later!
Kelly

Sorry it has been awhile since my last post. We had to wait a couple of days for BCBS to approve rehab services and in the meantime Gabrielle’s fever returned. We moved over to rehab late Thursday and the doctors over here have been very concerned about the fever. They have done more blood cultures, urine cultures, Chest x-rays, strep tests, and now a CT scan and a lumbar puncture. The good news is that so far all of the cultures are negative. Dr. Weiner believes it is aseptic meningitis which is basically an intense immune response triggered by the brain surgery itself. We continue to pray the cultures will remain negative and that the fever would disappear. The best news is that we haven’t seen any seizures and the follow-up EEG they did last week did not show any abnormal spiking or seizure activity. Praise God!

Despite the fever, which gets pretty high at times, Gabrielle has still been able to make some progress in therapy. She is able to sit-up unassisted for a good while now and she is beginning to move her left arm a little more. They have begun trying to stand her up which she seems to tolerate a little better every day. The fever definitely saps her energy and interferes with her ability to participate in therapy sessions at times so once that improves she should be able to work a little harder.

I have been out of commission for the past 1 1/2 days with a stomach bug so I quarantined myself to the apartment so as not to infect Gabrielle and to give myself a chance to recover. We have been trying to come up with a plan for the next few weeks. As it stands right now, Duff and the 4 other kiddos are going to head up to the “Bradford House” in NH (courtesy of the Eglintine family) while Gabrielle and myself stay in NYC and continue rehab for a few more weeks. Then, God willing, we can all head back home to NC together!

Thank you for continuing to check-in on us, think of us, and pray for us!

Love,
Kelly

Gabrielle is slowly improving bit by bit. She is growing more interactive and has been blowing kisses, waving bye-bye, and giving out high-fives. Her fever seems to be gone and the diarrhea has improved tremendously. She has been sleeping very poorly at night and is quite irritable in the wee hours of the morning. We’re not sure if her sleep cycles are just off or if it’s something else.

We were planning to come home to NC to begin rehab but what we learned yesterday is that once a person is discharged from the hospital it is almost impossible to get them readmitted for inpatient rehab. Therefore we have decided to have Gabrielle transferred to the rehab floor here at NYU for the next week while we work on lining up inpatient rehab somewhere closer to home. As of now, we know that ECU and Charlotte offer peds rehab for little people like Gabrielle. We are also looking into the Kennedy Krieger Institute in Baltimore which provides rehab for children recovering from hemispherectomies performed at Johns Hopkins. Once we settle on a facility we will then have Gabby “transferred” to avoid insurance glitches.

It will be difficult to move right into rehab without any break from the hospital way of life but I think it is definitely the best thing for Gabby. She needs at least 4 weeks of intensive rehab so she can begin to recover from one of the most aggressive brain surgeries performed. We continue to pray that God will lay out a plan for this next stage of recovery. We pray that Gabrielle will continue to move forward and make daily progress in the rehabilitation of her motor skills. We pray that God would continue to watch over our family as we work out the logistics of inpatient rehab, income, and the care of our 4 other children. God has already provided in so many amazing ways. Our families have been taking the very best care of Maddie, Gavin, Keagan, and Luke. They sound like they are happy and having so much fun we often wonder if they miss us.:) The apartment has been the perfect sanctuary to get a good night’s sleep and a refreshing shower. The doctors and nurses have been wonderful. Our friends and family have been so supportive. It really just amazes me how God has worked things out thus far.

For anyone wanting to learn more about hemispherectomy I came across the following blog http://jessiekelley.blogspot.com/ about a girl named Jessie who recently had the same surgery as Gabby. Her parents just started the Hemispherectomy Foundation which has been in the news. There are also links to several other blogs that share the amazing stories of other children who have undergone hemispherectomy.

I hope to post some pictures of Ms. Gabby soon!
Love,
Kelly

We moved out of the PICU yesterday late afternoon. We will miss the nurses there but we’re glad to be in a quieter environment with our own bathroom. Gabrielle’s fever is gone and the vomiting has ceased. She’s had a very bad case of diarrhea for the past 48 hours which is hopefully beginning to resolve. She is still extremely irritable and a bit withdrawn. Her left side has been pretty still. She moves the toes of her left foot in response to stimulation. We’re beginning to think outpatient PT, OT, and ST might b a better option so our family doesn’t have to split up again upon returning to NC.

Thanks for everything you have done to sustain us on this journey!

Love,
Kelly

Gabrielle has been struggling with a high fever again and is having trouble keeping fluids and food down. She has not been very interactive thus far and scared us a bit this morning with some funny eye movements called nystagmus. She seems to be a bit more alert this afternoon and able to make eye contact. They sent blood cultures and a urine culture to rule out any infection. We are still in the PICU where they take very good care of us but may be moving to a regular pediatric bed soon.

We have begun the process of looking into rehab. The doctors have recommended beginning with inpatient rehab and then carrying over into outpatient rehab. We are trying to find a good facility in the triangle area that offers acute inpatient pediatric rehab. If anyone has a recommendation we would love to hear from you.

We continue to pray Gabrielle will pull through the fever and that she will grow more alert and interactive.

I’ll update again soon!
Kelly

Dr. Weiner just came out of the OR and let us know that everything went very smoothly. Gabrielle remained stable throughout the surgery and lost very little blood. He feels confident that all connections were severed and is hopeful that this will stop the seizures for good. Gabby just went down for a CT of the head to rule out bleeding which is standard after a big surgery. She is still intubated and will arrive back in the PICU in the next half hour.

We will update as we know more and greatly appreciate your continued prayer.

Love,
Kelly