Gabrielle Faith O'Melia

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

Moments after I posted the last blog entry I returned to the PICU and found we had our answer. Gabrielle had 3 seizures in the time I was gone and has had 11 more since then. The seizures originated from the temporal and parietal lobes. All of the doctors, without reservation, have recommended functional hemispherectomy. Gabrielle will go down to the OR about 11am this morning to have the right hemisphere of her brain disconnected from the remaining structures. The doctors estimate it will be a 4-8 hour surgery. They predict about a 90% likelihood that she will be seizure free. The surgery will affect the motor and sensory function of the left side of the body and will also cause loss of half of the visual field in each eye. It can cause hydrocephalus which would require the placement of a shunt so we will be praying Gabrielle does not experience this complication.

The peace we have going into this surgery is amazing. God has faithfully answered our prayers and has lead us through this entire process. We know without a doubt that this is God’s will. Gabrielle was supposed to have the final stage of her surgery on Monday. It was rescheduled for today so we could monitor the spiking for a couple more days. Monday we hadn’t seen any seizures so we would have closed her without further resection. Can you imagine the devestation we would have experienced if the seizures had returned days after surgery was complete? I am so thankful that God has orchestrated all of this and that He continues to lead us through this storm.

I will post with an update later today.

Love,
Kelly

Gabrielle has definitely improved since I last posted. Thanks so much for all of your prayers and words of support. Her blood pressure and temperature have returned to normal and she is again taking in fluids and food. She has grown much more irritable over the last few days and is having trouble sleeping at night. She really just looks pathetic at times and I am so glad tomorrow is the final stage.

The plan for tomorrow’s surgery is still up in the air. We have not seen any seizures since the resection a week ago. Gabrielle has been taken off all of her anti-convulsants to see how the spiking over her motor-sensory area responds. The doctors are hesitant to remove such an important area if the seizures have stopped. The concern is that spiking could lead to the return of seizure activity in the future. If we see seizures in the next 24 hours we will proceed with further resection if we do not then we will proceed conservatively and remove all the grids and close her up.

This decision is obviously in God’s hands. So many bible verses have flooded my mind over the last several days. Among these:

Proverbs 3:5
“Trust in the LORD with all your heart
and lean not on your own understanding;
in all your ways acknowledge him,
and he will make your paths straight.”

Matthew 6:34
“Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.”

Philippians 4:6
“Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.”

Psalm 46:10
“Be still, and know that I am God;
I will be exalted among the nations,
I will be exalted in the earth.”

And so I am constantly reminded to seek God, trust God, and worry not because He is Lord and He knows the path we should take. So we will sit in our room the next 24 hours continuing to wait on God. Waiting for Him to reveal His decision to us and praying the peace that passes all understanding will be ours.

I will update tomorrow.
Love,
Kelly

Gabrielle has had a rough day today. Her blood pressure has been running high, she has a fever, she is vomiting up all fluids, and she is pretty withdrawn and sleepy. Gabby’s left side has recovered amazingly well from the surgery. She was trying to pull a splint off using her left hand. Dr. Weiner was impressed! She is currently having another MRI completed to check for placement of the grids and electrodes.

We have not seen any seizures but the neurologist reported fairly regular spiking in the motor area and parietal lobe. He said he would proceed with hemispherectomy at this point if Gabby was his child. It was hard to hear about the continued spiking but at the same time we’re relieved to hear about it now while her skull is still open rather than a month from now. Still, it is so difficult to sign your child up for a surgery knowing it will result in new deficits. We have much to discuss with the doctors as we begin to make this next decision. We pray that God would direct our path and that Gabby would begin to feel better.

Thank you for your continued thoughts and prayer.

Love,
Kelly

Surgery is over! Dr. Weiner just came out to let us know that everything went as planned. He was able to map motor responses which was an unanticipated bonus. He removed the remainder of Gabrielle’s frontal lobe, all the way up to the primary motor cortex, and about half of the right temporal lobe. We should expect at least temporary left-sided weakness. He moved the grids and electrodes over the remaining right hemisphere to monitor for any further seizure activity. If these areas continue to produce aberrant electrical activity then the final stage may require a complete disconnection of the right hemisphere (hemispherectomy). So now the waiting begins. I’m praying that regardless of the outcome we would remain strong knowing God’s perfect character. Knowing He is all good and His plan truly is what is best for each of us.

Thank you for praying today and for the messages of support you have sent. It means so much knowing we are surrounded by so many loving and caring individuals!

Love,
Kelly

Tomorrow Gabrielle will have the next stage of surgery completed. We are going to proceed conservatively at this point. The data shows activity in the anterior temporal lobe, remaining frontal lobe, and the motor strip leading into the sensory area of the parietal lobe. Dr. Weiner and Dr. Devinsky have recommended that we resect non-eloquent cortex initially and only go back for the motor/sensory area if the seizures continue. Consequently Dr. Weiner plans to remove the remaining right frontal lobe and the anterior portion of Gabby’s temporal lobe. He will remove the tissue all the way up to the motor cortex including the supplementary cortex which means we may see paralysis of the left side but it should be temporary and movement usually returns in 1-4 weeks. Mapping out the area that does control motor movements in a child under five is normally difficult and the doctors often have to use anatomical landmarks to guide the resection. This just means there is a little higher risk of accidentally resecting a motor area which could result in a deficit.

It is our prayer that the resection tomorrow will control Gabrielle’s seizures and that she wouldn’t have any lingering paralysis or weakness. It is our prayer that any resection after tomorrow would prove unnecessary as it could result in long-term motor and sensory deficits of Gabby’s left side. We pray for God’s continued strength and guidance. Thanks for all of the amazing support you have provided through emails, messages, phone calls, etc.
Thanks for remembering to lift our little girl up to the Father.

I’ll update tomorrow.
Love,
Kelly